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February 27, 2013

Humalog vs. Novolog.

It wasn't until recently that I started thinking about building up a tolerance to insulin.  Do you build up a chemical familiarity, a resistance of sorts, to a drug after taking it for ... oh, say a few decades? Do PWD eventually become the Dread Pirate Roberts, building up a tolerance to iocane powder

"I realize this is probably ridiculous, and I'm sure there aren't any studies on this," I said to my doctor the other week.  "But it has prompted me to want to try a different kind of fast acting insulin, to see if I have better results.  Is that something I'm able to do, to have a script written for a one-off in order to assess how the insulin might work for me?"

"We can do that."

And I left the appointment, expecting my pharmacy to auto-dial me when my order was complete.

Instead, a three-month supply of Novolog ended up on my doorstep, having been accidentally shuttled through my mail order pharmacy and eating up my insurance order that was intended for my normal course of Humalog. Which is why I'm experimenting with Novolog for the next few months, as a result of a shipping error. 

Does it even matter?  Jury is still out for me.  Also, the smell of the maple candle my mom bought us is making my head hurt.  I'm throwing it out today.  So ends this aside.

I've been taking Humalog for over ten years, after switching from Regular insulin before starting on my insulin pump, so I feel like I'm familiar with how Humalog acts in my pump and on my blood sugars.  Switching to a different, but similar, rapid-acting analog should hopefully be a seamless transition.  Last night was my first pump-load of Novolog, despite the last unopened bottle of Humalog in my stash.  (I didn't want to use up the Humalog entirely, then switch to Novolog, because if I absolutely hated the new insulin, I'd be stuck with it.) 

So far, last night was entirely uneventful, and the biggest change I've noticed (in less than 24 hours of use) is that the bottle of Novolog plays host to way more bubbles, which I hope doesn't translate to a bubblier reservoir.  I'll have a better sense of how this insulin plays once I dial in a few meal boluses and then watch the Dexcom graph play out.

Has anyone switched from Humalog to Novolog?  Or Novolog to Humalog?  The responses to this question, when I posted it on Facebook, varied quite a bit.  Did you notice any changes?  Does it all come out in the wash?  (And if that's the case, why were you washing it?)  Or is it like the Pepsi Challenge, where some people just can't tell the difference and others are left with a bad taste in their mouths?  

February 21, 2013

A Real A1C.

Last week, I had lab work run to review with my new primary care physician (my previous one, after only a year, is leaving the practice, which sucks because she was great, but thankfully, the new guy seems cool, only he wears a bow tie and I'm not sure how I feel about that, or how I feel about this massive run-on sentence).  It was standard stuff, including an A1C, and my new doctor and I reviewed all of the results at my appointment this week.

And for the third time in a row, my A1C is at a level I'm happy with.  It could drop a small bit, but if it stayed where it is for the rest of my life, I'd sleep fine.  But what makes this recent run of decent A1Cs different is that this time, the number is reflective of real numbers, instead of the averages of highs and lows. 

Here's what I mean:  I've had A1C results that were higher, but that number was a reflection of a lot of normal to high blood sugars (100's to 160s), with some true highs thrown in (over 160), and very few lows.  Conversely, I had really, really low A1C results during my pregnancy that were the direct result of running low all the time.  (ALL THE TIME, like bowls of cereal eaten without a bolus and I'd still end up at 60 mg/dL kind of lows.  Crazy hormone town.)  After a low over a year ago that really threw me for a loop, I was very edgy about low blood sugars and actively avoided them.  This meant a higher average run, and few lows due to a lack of aggressive corrections. My endocrinologist  suggested that I raise my blood sugar "correct to" goal to something in the 140 mg/dL range, instead of 100 mg/dL (where it was before, during, and after pregnancy). 

Over the course of a few weeks, that hypoglycemia fear eased back a bit and I felt comfortable with a lower blood sugar goal, but I was still edgy about lows.  I started being more vigilant about tracking and correcting highs (thank you, Dexcom, for giving me a heads up on those highs as they start to creep in, versus finding out about them once I'm already high), which began a steady, but slow, decrease in my A1C. 

Visual courtesy of one Birdzone

And this is why I'm fine with my A1C result, as it stands right now.  Because it's not an average of a pile of lows and highs and some in-between numbers.  It's a reflection of blood sugar values that are, for the majority of the time, in a range that's on target, without throwing in a bunch of lows to cause the drop.  It doesn't mean I have anything remotely close to figured out, but for this moment in my life, I'm not actively fretting about my A1C.  (This is a novel feeling.)

"So what you're saying is that you're fine with this number?  Because I'm fine with this number," my doctor said, fiddling with his bow tie.  And then he paused.  "Not that I need to be fine with it, though.  This is your diabetes."

This is why I'm okay with my A1C right now, and with my new primary care doctor.  

Only I'm still deciding how I feel about the whole "bow tie" thing.

February 13, 2013

Down the Stairs.

What, you didn't want to eat the glucose tabs sitting right there, on the bedside table?  WTF IS WRONG WITH YOU?It was a weak alarm, but I still heard it.  I forgot to take the Dexcom receiver out of its case before I went to bed, so the vibrations weren't directly against the wooden nightstand, but the repeated BEEEEEEP!ing was enough to rouse me, after about fifteen minutes. 

"LOW BLOOD SUGAR UNDER 55 MG/DL GET THE HELL OUT OF BED" the screen screamed at me.

"Sure, yeah."  

I clicked my pump (aka 'my watch') to see what time it was - 2:32 am - and I tried to run my hand through my hair to get it out of my face, but my fingers ended up stuck in the mess of sweat-matted, tangled hair.

The lamp switched on after some fumbling, and I stood up gingerly, removing the brace from my foot (thank you, plantar faciitis) so I could walk.  The walls of my bedroom seemed like they were throbbing and pulsing, like I was standing inside of someone's beating heart.

My meter showed me a "34 mg/dL," like it was a prize I won for being so sweaty.

Despite the bottle of glucose tabs on my bedside table (open, and ready, but ignored), despite the sleeping and capable husband in our bed, and despite the fact that I was walking on a compromised and even-more-clumsy-than-usual foot, I decided to go down the stairs to get juice.

Foolish.

And despite the fact that I actually looked at the juice bottle to calculate (ha?) how many carbs would be in a glass, I still drank too much of it.  And then, fueled by adrenaline and bad decisions and the desire to not feel like the kitchen floor was made of shifting sand, I also grabbed a handful of gum drops from the bag in the fridge.Not smart.  Not even a little bit smart, especially because as I was chewing, I was calculating a correction bolus for the overtreat, but then forgot to dial it into my pump.  It was a perfect storm of bad decisions, with a brain slogging through hypoglycemia at the helm.

Such a strange hypoglycemic aftermath: put the juice glass in the dishwasher and then, for whatever reason, decide to finish loading the rest of the dirty dishes in and set the dishwasher to cycle, then go upstairs to blow dry my hair in an attempt to ward off the chills that were already setting in from too long in damp, low-sweaty clothes, then brush my teeth, then check on Birdy to make sure she's okay ... what prompts this routine?  Is this the way my body calms down after being jolted from sleep by panic?  

After about 45 minutes, I felt normal.  I saw 99 mg/dL and an arrow pointing up, so I figured I was safe.  

But the rest of the night was spent listening to the Dexcom BEEEEEEEEP! because my blood sugars were cruising up, up, and away, ready to greet me with a "HIGH!" in the morning. (That, and Siah was nose-to-nose with me this morning, which made me happy and grossed me out, all at once.)

I should have just stayed downstairs and started my day at 2:30 am, because there wasn't going to be any sleep after that moment, anyway.  Besides, there's someone always awake in the DOC, isn't there?  All hours of the day?  

* You don't keep a bag of gumdrops in the fridge?  Just me?  They were on sale at CVS. Happy Valentine's Day?  Go spare a rose instead.  Gumdrops are the devil's work.

February 06, 2013

Context.

Out of context, this early morning Dexcom graph looks like things are all figured out, with barely a bite into the hypoglycemic range.  It makes diabetes look easy.  It makes blood sugars look like they are something you don't even have to think about.

Hey, this looks okay ...

Until you see the whole picture, in context:

... oh, I get it now.  Yesterday you were high all day.  That blows.

Yesterday was miserable, blood sugar-wise, with numbers cruising around in the high 200's and not budging for hours, despite rage-bolusing.  I felt sluggish and exhausted, my brain cells thick with sugar and every word in my mouth swiped by hyperglycemia.  Hours with high blood sugars are The Suck.  It took a full infusion set change (new insulin bottle, new site, new location) and some exercise to bring things back into some semblance of "control." 

The big picture sometimes isn't pretty, but it's real.  And today will be better.  (I'm saying this over and over in my head, with my shiny new infusion set and this morning's Dexcom graph that's more seascape than mountain range, thankfully.)  Today will be better.

January 25, 2013

Dexcom G4: Finally, a Case.

When Donna from Tallygear reached out a few weeks ago and offered to send one of her Dexcom G4 cases for me to try out, I was all about it because I almost drop the receiver onto the tile bathroom floor, the hardwoods in the living room, the icy driveway, and the concrete sidewalks going into the gym at least once a day ... for all of these surfaces.  I'm not very graceful, and when you add gloves to the mix (necessary in this arctic weather that my daughter accurately described as "a snowman's breath"), I'll fumble even my most precious of possessions.  (Note:  Birdy holds hands with me and walks on her own.  She's safe.)

The Dexcom G4 system is more accurate than the previous iteration, but it's definitely not sturdier.  Or at least I'm afraid to find out just how delicate the receiver is.  The old system was a big, fat egg and its round edges (and convenient silicone protector) made it seem more like a softball than an iPod.  But this new receiver - sleeker and sexier and far more the modern day device - also seems more breakable.  The big screen, the flat edges, the lack of a protective case.  (Okay, the new receiver does have a protective case, but it's about as bulky as smuggling a fistful of those Keurig coffee cup things underneath your shirt. Not streamlined in the slightest, and also, I don't wear a utility belt during the course of my day job so clipping it to something is a pipe dream.) 

Which is why I was excited to try the Tallygear case for the G4.  I was using this:

Here is my scratched up dining room table.  In other news, I need to dust.

... and it worked fine only it was bigger than it needed to be and I couldn't see the Dexcom graph unless I took the receiver out of the pouch.  Now I'm using these:

Love.

... and it's a nice, tight fit around the receiver, gives it a bit of extra cushion in case it falls (or if I happen to throw it if it BEEEEEP!s to tell me I'm high in the middle of the night and then tells me again, every fifteen minutes, for good measure), and I can see the graph through the plastic window screen (and I can also press the button through that screen).  While I'm still longing for the silicone case that wrapped tightly around my old Dexcom egg receiver, this Tallygear case is an excellent interim.  

The little clippy things that I can use to clip the case to the inside of my purse, to my belt loop, around my wrist, etc. are also very useful.  It also has a loop on the back of the case if you want to toss this thing onto your utility belt, Batman.   

You can purchase this on the Tallygear website for $18.95, and there are a ton of different color options.  You don't have to be as boring as me and go for basic black (I'm calling it "Darth") or purple (Grape Ape?).  The bright yellow is pretty badass.  And if you use the "DexG4" coupon code, you'll get 10% off your order.  

[Disclosure:  I received this case for free, I didn't promise to write a review, but I decided to anyway because I have been itching to find a G4 case that I like, and this is a good start. So I wanted to share.  I need to protect that receiver from my klutziness.]

January 18, 2013

In the Trenches.

What was different about yesterday?

Oh.  Hey.  You suck.

At first, I thought the Dexcom sensor was quitting.  It was Day 8 of this sensor, but even though the adhesive was hanging on by a thread the day prior, the results were so matchy-matchy with my glucose meter that I was reluctant to pull the sensor.  (That, and it didn't itch at all, so if it was spot-on and not giving me leg leprosy, I was all in.)  I slapped on some Opsite Flexifix tape around the edges, in hopes of grabbing a few more days.

"GIVE ME YOUR BLOOD" the receiver shouted (or offered up the little blood droplet equivalent of that demand).  It wanted to be calibrated way more often than normal, so I figured the sensor was finally quitting.

Only every time I tested, it was right:  I was low.  Again.  Repeatedly. 

WHY?  I'm not sick.  I didn't eat something strange and new.  I didn't push through some foreign and difficult workout.  The infusion set wasn't new.  I'm not pregnant.  (Repeat:  I am not pregnant.)  I wasn't stressed.  I didn't treat that first low at 7 am with a bowl of Rolos and then a massive bolus.  Nothing was different about yesterday that should have warranted this series of hypoglycemic events.  Yet there were five of them throughout my sensor's "last stand." 

The sensor yawned off my leg last night, and I made the rotten decision to put a new one on this morning.  Which, of course means that I was 47 mg/dL at 3 am.  (My poor liver, even with a shock of carbs, couldn't rebound me out of that one.  And yes, I had an alarm set for 2:30 am, based on the history of lows I had that day.  And yes, I slept through it.  Yes, I'm pissed off about this.)

The definition of diabetes is doing the same thing over and over again and getting wildly different, and sometimes frustrating, results. 

But the definition of a person with diabetes is someone who keeps trying, despite the ironic insanity.

January 09, 2013

:: Head Explodes ::

 BLEEEEEECH.  Blech.(Or at least I wish it just WOULD already.)

I've never had a sinus infection before, but I've heard the rumors.  Some family members of mine have been plagued by this sort of this their whole life, and they describe the swollen head feeling with their hands almost touching their temples, as if connecting their fingertips to their head will ignite the switch.  Until yesterday, I was as empathetic as I could be, from my ivory tower of inexperience.

But hot damn (one), I've earned some stripes in the last 24 hours.

Something not unlike a brick has taken up residence behind my nose and eyes, surprising me when I look in the mirror and I don't see my eyes bugging out like a cartoon wolf.  With this comes a headache (no surprise) and a fever, and the stupid, head-shaking high blood sugars that require a 185% basal rate and some aggressive bolusing to bring back into some semblance of range.  This sinus brick plague also requires acetaminophen, rendering my Dexcom useless for the time being.  Trace ketones hung tight for the majority of the day, and overall it was a strange battle of hydration, sinus pressure relief, and blood sugar stalking.

Last night was the peak of my desperation.  The Vicks vapor salts or whatever they are called worked to relieve the pressure for a few minutes.  A steaming cup of tea provided ten minutes of proper breathing.  And a hot shower helped a little, but the effects were temporary.  What worked best was a short clip of cardio exercise.

"What are you doing?"  

"I'm going downstairs for like five minutes to use the ellipmachineI read online that it could clear my sinuses."

Despite the fact that it was 10:45 at night, Chris just nodded his head.  "Go for it."

And hot damn (that's two), it worked.  After a few minutes on the elliptical, the brick in my head shifted a bit and let me breathe like a human.  The benefits of exercise rear their arrogant heads once again.  (YAY!) 

I climbed into bed that night, armed with Kleenex and a humidifier and other assorted bits of hotness.

"If you wake up and I'm not here, don't be alarmed.  I might be downstairs on the elliptical," I said to Chris.

He laughed.  "Whatever it takes."

"Dude, I'll use that thing all night if it's the only way I am able to breathe."

This morning, the sinus pressure was significantly reduced, the ketones were MIA, and I'm hoping this means I'm on the road to having a brickless-head.  The faster this mess mends, the sooner I can put my Dexcom back on and reassign my workouts to normal hours of the day.

Hot damn.

November 02, 2012

Dexcom Rash: Swinging for the Fences.

The Dexcom rash wasn't fixed by Opsite Flexifix tape underneath it as a barrier between the sensor and my skin.  Alcohol wipes after showing/before applying the sensor didn't work, either.  Neither did using a hydrocortisone cream, or Skin Tac, or Cetaphil soap.  Dexcom, regardless of what I threw at the sensor, continued to act rashly.

And this is where a reader came in with a suggestion that saved my skin.  She wrote, "You need to spray steroid asthma inhaler on the site after the alcohol or iv prep and before you insert."  She also attached a photo of a rash she received from a CGM and it looked just like mine.

Oh Internet ... I love you big time.  

It took some research, and several phone calls/visits/consultations with my PCP, dermatologist, and endocrinologist, in addition to phone calls to the Dexcom hotline o' bearded service (shout-out to The Hammer) to lock down a prescription for a steroid inhaler (the conversations about this off-label application were long and intense), and this morning marks the 36 hour mark with a sensor. 

Without a rash.  

"And there goes the ball ... right over the fence ... home run!!!" 

*Crowd goes wild.  Or at least Birdy claps her hands and the cats don't throw up, for once.*

Just as the fabulous reader (my hero) had suggested and after discussing the option at length with my endocrinologist, I showered and dried off, and then sprayed the inhaler spray against my clean, dry skin.  (It surprised me when it came out as a kind of powdery substance and not a mist.)  I sprayed it about three times to cover the anticipated surface area of the sensor adhesive.  After about 30 seconds, when my skin seemed dry, I placed the sensor on like normal and deployed the needle.  The adhesive patch felt a little stiffer and cracklier than normal, but the following morning, it was smooth and pliable against my skin, like it usually is.

But the best part is that after 24 hours, I wasn't itchy.  And this morning, at the 36 hour mark, the adhesive edge wasn't ringed with the red, puffy, reactive skin I've become used to since the end of August.  I'm not sure where this adhesive allergy came from in the first place (and for those who asked, no, I'm not pregnant), and I'm not sure why the inhaler steroid is battling it, but it is.  And honestly, after so many weeks without a proper Dexcom safety net, I don't care why it's working.  I'm just thankful that it is, and that my medical team is on board to try some different things in efforts to keep me safe.

Mystery rash cured, hopefully!

Note:  This is not medical advice.  Please don't try this without consulting with and getting clearance from your medical team.  I'm just sharing anecdotal information about something that worked in my personal diabetes life.  Nothing I ever say should be taken as medical advice because if I was really useful, I'd have an A1C of 5.7% and I'd burp rainbows.

(Second Note, for Monica, who may be reading this post today and who I know hates sports analogies.  "Swinging for the fences" means "attempts at doing difficult or near-impossible things," or at least according to Urban Dictionary.  You're welcome.  Oh, and this is also for you.)

October 18, 2012

Timesulin: Informed MDI'ing.

During my short experience back on multiple daily injections (MDI), aka "pump vacation," I made frequent use of the Timesulin pen cap.  This sample was sent to me by John Sjölund, CEO and co-founder of Timesulin, and since I received a few samples, I passed one along to Christopher Angell, in hopes of sharing perspectives from someone who was moonlighting as an MDI'er (me) and someone who is a full-time MDI'er (Christopher). 

For me, the Timesulin pen cap was a fantastic transition tool for me because it helped bridge the information gap.  When I'm using my pump, I have access to information like the amount of insulin on board, the bolus calculator, the ability to micro-dose, etc.  Going from pumping to pens is a tricky transition, because injections don't allow me the ability to fine-tune the way I'm used to.  But this Timesulin pen cap thing helps my brain out, because it provides the basic information of "when did I last bolus?"

That, for a scatterbrained mess like me, is crucial.  I have a tendency to rage bolus when I'm high, and this pen helped me avoid stacking boluses.  I also have a tendency to forget when I last bolused (see aforementioned scatterbrainedness), so the history screen/status screen on my Animas Ping is essential to sanity.  This is where the pen cap comes in, because after being uncapped for 8 seconds (which, according to their research, was the average of how long it took to take a pen injection - we are a fast crew, it seems!), the timer resets, letting you know when you last used the pen.

In my world, the size of the pen/cap didn't register much for me, because it lives in my meter case (a small, but long, makeup bag I bought at Target last year), so it fit fine in there with all of my other supplies (meter, lancets, pump battery, a quarter to change the battery, and spare pen needle tips). 

Christopher also took this pen cap for a test drive, and he was struck initially by the size of the thing (and we'll put his comments in italics, so I don't get tangled):  At first glance, I thought the cap looked comically oversized, as though someone had hit my original cap with a hammer and it had swollen to twice its normal size, or the insulin cap equivalent of the foam novelty hand often seen in football stadiums.  Timesulin (my initial reaction notwithstanding) did a very good job of matching their cap to my Humalog Kwikpen™.  If anything, I would say they did too good a job.  The longer I used it, the more likely I was to simply grab the pen and uncap it, without looking at the timer screen, before remembering that was, in fact, an option.  While I understand the impulse to try to blend it in with existing equipment, a more contrasting/eye-catching design would have kept me more aware of its presence/function, and allowed me to take greater advantage of it.

The timer impacted him, as well, but in a slightly different way: If anything, I would say that Timesulin made me aware of how often I truly forget whether or not I have given an injection.  Not once in the 2+ weeks that I have used it have I used it for that purpose.  That said, it's an important enough piece of information that even needing it and getting it once or twice a year is more than enough to justify the unobtrusive accessory.

What I found myself using it for more than anything (outside of general curiosity about how long I might have gone between injections) was as a timer for showing me how long it had been between bolus and meal.  It was a very helpful reminder to try to pre-bolus for meals I knew were likely to spike me, such as chinese food, as well as a convenient way of tracking when that pre-bolus may have been too "pre" and I ought to consider finding something to pre-empt a pre-meal hypo.  I would leave the pen on the table until my food arrived, so I could keep tabs on the life of my freshly introduced insulin.

Overall, I think this concept is brilliant, in both its simplicity and execution.  Even though I'm back on the pump and have retired my bottle of Levemir back to the fridge until my next MDI dabbling, I still keep the pen cap on my backup pen.  This tool is a powerful, yet straightforward, weapon in my diabetes arsenal. I really liked, and like, having it on hand.



And, for the record, it tracks up to 99 hours and 59 minutes, at which time it sits quietly.  Which makes me uncap it and restart the timer, because I can't help myself.  If you want to check this out for yourself, you can buy one through the Timesulin web store.

September 11, 2012

26 Years with Type 1.

Last night at the gym, I ran as hard as I could, and as fast as I could.  Not the hardest and the fastest of anyone in there, but it was the best I could do.  My legs moved, my arms moved, my ponytail flashed behind me and I felt alive, alive, alive with this strange understanding that "forever" felt tangible and raw.

And with every step, the same sentence ran through my head.  "You can't catch me.  You can't catch me."

I've had type 1 diabetes for twenty-six years today.  Last week, I felt like it might have been a few steps ahead of me.  Yesterday, it was nipping at my heels.  But today, it's so far behind me that even when it hollers, I can't hear it.  Not over the sound of my daughter's laughter or the feeling of my family's love.

Not today, diabetes.

You can't catch me.

(This is all still trueJust add a year or two.)

September 06, 2012

Twice.

"I have family members with diabetes, but they don't take care of themselves," he said.  "They eat whatever they want, and they never test their blood sugar, and they never go to the doctor."

The unspoken thought, capping the end of that sentence, felt like, "So they deserve whatever they get."  

I had a hard time keeping my mouth shut, even though I was at this dinner with people I didn't really know, and who didn't really know me.  They were aware of the fact that I have type 1 diabetes, but it wasn't a big discussion point throughout the day, so I think it was a little snippet of information that fell by the wayside by the time dinner was served.

"But how do you know that?" I blurted out.

He stopped and looked at me.  "What do you mean?"

"How do you know they don't take care of themselves?  Or go to the doctor?  Or test their blood sugar?" 

"Because they don't.  I never see it.  Not even at holidays."  

I didn't want to be That Person. I had zero desire to be the one who raises her voice at dinner table with strangers, preaching on about the misconceptions society has about diabetes, and about all the different kinds of people who live with it, blah blah blah.  I wanted to have dinner, and hang out, and have a good time.

But I don't like the "yeah, but the majority of people with diabetes DON'T take care of themselves" argument, because I take care of myself.  I try, and I do.  And I know so many people who take care of themselves the best they can, and so many who, despite dedicated efforts, still run a rough road.  Perfection isn't achievable, and guilt is inescapable.  Chris encourages me to not take these kinds of discussions personally, because he hates to see my feelings scraped, but it's hard not to take it personally.  I have diabetes.  They're talking about diabetes.  Even when I try, it's hard to keep my viewpoints objective.

"Did you see me test my blood sugar at the table a few minutes ago?"

"You did?"

"Yeah.  I have tested twice, actually, at this table.  While you sat there.  And that orange juice I had before?  Which might not have seemed like the 'right' food for a diabetic?  I was treating a low blood sugar.  You don't always see what we do to take care of ourselves.  But there's a lot that we do. I swear."  I smiled at him, but inside I was begging, pleading for him to see me as a person who, however my life wrings out, didn't "deserve" a damn thing.

There was an awkward silence.

"Twice?  You tested twice?"

"Yeah."

This time, he smiled warmly, erasing all awkwardness.  "Maybe they do stuff I don't see, too." 

I smiled back, wanting to jump across the table and hug him. 

"I hope so."

June 21, 2012

From Abby: Sodatastrophe!

The Great Soda Switch?  Could it happen to you?  Does this sound sensationalistic enough?  ;)  Abby experiences it firsthand.

*   *   *

Don't let Sodatastrophe happen to YOU!(A recent Facebook status update from our favorite diabetes ninja convinced me to write this story. I wasn't going to bring light to it, because I didn't think it happened often, but apparently it can. And does!)

I don’t put much faith into fast food joints. I order safe things (if I even go) that I pretty much know the carb count of, or can look them up online, and I stick to things that are tried-and-true for me.  Basically, I eat the same things, from the same places, when I'm eating fast food. 

So a few weeks back, I was traveling home from a really fun (but blood-sugar-havoc-wreaking) trip to Rhode Island (No, not to see Kerri and the Bird, unfortunately [Editor's Note:  Next time!!]) and we stopped at Panera to soak up some veggies and bread. I sauntered over to the soda machine and put my cup under the Diet Coke (the caffeinated one). What came out, you ask? Bubbly water. No Coke whatsoever. Lame. I walked up to the counter and politely said, "Um, excuse me? The Diet Coke seems to be out of ... Coke. It’s just soda water." And the woman responded, "Oh, really? Okay,  I’ll have someone check on that right now. Sorry!"

And so I proceeded to fill up my cup half way with Diet Caffeine Free Coke. Or so I thought.

Another woman came out about ten minutes later and put a sign on the regular Diet Coke button that said “Out of Order”. Imagine how bummed I was, since we had another two and a half hour car ride back home. So I finished my meal, and filled up my cup with the not-as-tasty caffeine free Diet Coke on my way out.

And then chugged the whole cup in the car.

An hour later, Dexy is screaming at me that I’m 350 mg/dL with an up arrow. To which I responded, "What the heck? I always eat that food at Panera, and I know I bolused right.”

Finger stick confirmed: 372 mg/dL. This is when I realized that I probably didn’t notice the weirdness taste of the must-have-been Regular Coke I’d clearly chugged since it was supposed to be caffeine free and I chalked up the weird taste to that.

A quick stop to a gas station (to pee, of course), a liter of Aquafina, and a hefty correction bolus later, we were back on the road.

Moral of the story: Even the soda you get by yourself from the machine isn’t always a safe bet.

(Disclaimer I freaking love Panera and have been back since. This will not hinder the fact that their Asian Chicken Salad and Broccoli Cheddar Soup are downright delicious. I’m just going to stick to lemon water from now on.  Safer.)

June 04, 2012

Insulin Pump on the Beach.

"Oh, it's like what Cindy has!  That's what Cindy has!"

The lady was about twenty feet away from me, stage-whispering to her husband. 

"Is that the pump?  The insulin pump thing?"  her husband asked, gesturing toward me.  

I lifted the beach blanket by its corners so it would spread out nice and flat.  "It is an insulin pump," I said to them, waving, unaware until that moment how obvious my insulin pump was, clipped to the bottom of my bathing suit, the tubing tucked in kind of haphazardly; it was a diabetes Bat Signal.  "It's nice to meet you!" 

The woman came over, her hands fluttering and her mouth talking and smiling all at once.  She was so excited ...

"... to see a real insulin pump!  My daughter went on one a few years ago, but I've never seen anyone else with one.  And at the beach!!  She's going to love hearing this. Your pump looks different from hers - is it?"

(I loved that she automatically assumed I knew what kind of pump her daughter was on, as if there was a community of people with diabetes who are in constant contact with one another and comparing notes ... wait a second ...)

"Mine is an Animas pump.  Is hers Animas or Medtronic?  Does it have tubing?"

"Yes, it has the wires.  Hers is the Medtronic one.  She really likes it.  How long have you had diabetes?"

"Twenty-five years.  How about your daughter?"

"About twenty years.  She's 31.  She's trying to lose weight and be in better control.  I don't know half of what she does, but I know she's always trying to do better."  The corners of her mouth tugged into a brave smile.  "She doesn't know I worry but I worry all the time."

"My mom does, too."  My mother and Birdy were a few yards away, building a sand castle.  "She worries.  But she knows I'll be okay."

Beach blanket Birdy"Is that little one your daughter?"

"Yes.  She's two."

The woman smiled.  "My daughter would like to have a baby.  That's part of why she went on a pump.  You know."

Birdy came running toward me, her ponytail bouncing and covered in sand.  "Ocean, Mama!!"  The bucket of sand in her hand spilled as she lifted her arms excitedly.  "Sand!  I has sand!"

I gave the woman a big grin as my daughter tornado toddled up the beach, her arms outstretched. 

"I do know."

May 31, 2012

Dream World.

In a perfect (diabetes) world, every menu would come with a nutritional breakdown, all handy and listed right there for carb-count, insulin ratio mathification. 

I'd like to teach the world to carb count, in perfect harmony ...

That is all.

April 10, 2012

Rules Of Love.

In Austin two weeks ago, I had the opportunity to finally meet Josiah Hammer (known affectionately across the world as "The Hammer"), who works at Dexcom and is my direct point of abuse contact at Dexcom for when I screw things up.

During the course of an email exchange, The Hammer sent me a page from an old health book that he found - the Modern Home Medical Adviser: Your Health and How To Preserve It (edited by Morris Fishbein, MD [who, according to many online sources that may be less-than-credible-but-still-cracked-me-up said that Fishbein was originally aiming to be a clown, but realized there was more money in medicine], published in 1942) which included a chart, of sorts, dictating who should shag whom. 

Excerpts:  

Only four rules. The shortest rule list a PWD has ever seen, to date.  About dating. ;)

Of course.  Because all decisions of love are made with diabetes in mind.  There's something about this chart that makes me both roll my eyes and then picture a diabetes Punnett's Square.  Love is a tangled web as it is - plotting decisions against a diabetes graph makes things even more complicated.  Thankfully, good ol' Morris was there to help people sort out who they should be smooching on.  (/sarcasm.)

This book also featured "blameful" and "blameless" diabetes, helping to drive home the misconception that type 2 diabetes is something people should be beaten with a stick for having and that type 1 is the result of hereditary circumstances (just like in my case, where I"m the only diabetic in my entire family, of any kind ... /sarcasm once again).

The Blame Game sucks.

Sometimes I look at how diabetes is currently portrayed in books, television, and other media outlets, and I'm frustrated.  It's a potluck of misconceptions, facts, and always colored by opinion, but it is slowly becoming more accurate, and more "real."  People are learning about all different kinds of diabetes and the varying treatments, and the discussion about diabetes entering the mainstream is increasingly credible.  But iooking back at the so-called "medical books" from the early 1940s has blown my mind in a way that Steel Magnolias never will. 

We have come a long, long way.  And I'm grateful for that.

February 23, 2012

From Abby: Scared.

No intro needed on this one.  Abby shares her thoughts on diabetes, dating, and disclosure.

*   *   *

This weekend as I was working through some of Kerri's "Generation D" columns on dLife, and reading a few here and there while watching a Whitney Houston Marathon on Lifetime (judge me all you want, folks), there was one post that literally made me stop what I was doing and say, "Hmph, I think it's time I talked about this."

I am so afraid of being silently discriminated against because I have diabetes. So afraid, and I don't talk about it with anyone.

Luckily the field of work that I've chosen saw my dead beta cells as a resume booster, and my family is full of medical professionals, so they accept me. I also have some really great best friends (one of whom also has type 1 diabetes) who embrace the awkwardness of my pump tubing and the test strip trail. But boyfriends? This is where my anxiety lies.

I don't really feel comfortable talking about my dating life online - just not at that point in internet comfort yet. But I think there's an aspect of it that needs to be talked about more ... namely, that fear that I will meet someone and when they find out my body is dysfunctional, they will delete my phone number.

If you don't have diabetes, or a some chronic illness, you might think this sounds crazy. Heck, even if you DO have a dead organ, you might think this is ridiculous. However, I think it's fair to say, that there are a lot of us out here living in the dating world who are scared to death that Prince or Princess Charming will have a phobia of needles.

As strong as I am in other areas of my life, I will never feel 100% confident with anything that I do because diabetes looms in the back of my mind. Diabetes effects everything that I do, everywhere I go, and everyone I encounter. This can be extremely intimidating, and I'm not sure I could blame a guy for running at mach 3 in the opposite direction of my glucose tabs. That is what scares the c-peptide out of me.

I know that I should just tell myself that "The One" will accept my diabetes and probably be like, an Endocrine Fellow or something. I know that diabetes probably isn't as scary to the general population as it is to me. I'm fully aware that this fear is partially ridiculous.

But for right now, I'm scared.

*   *   *

My relationships in the past (and my marriage now) haven't ever been perfect, but diabetes wasn't ever an issue in finding love or being loved.  (I actually just submitted a vlog post to Animas about this topic - coming soon on their site.) But it can be an intimidating thing, bringing diabetes into relationships. It can impact sex and what you're comfortable sharing may vary depending on how you're viewing your health on a day-to-day basis. I've been where Abby is, and I know so many of us have been wary of how our health may impact our relationships. Any words of advice are welcome.

January 31, 2012

What We Document.: Solving for "Why."

Dexcom graphs that look like gigantic Ms and Ws?  I see those all the time.  But when I sift through the pile of photos I have on my computer (in the folder marked "Diabetes Crap;" I can write real good, Ma), the Dexcom graphs I see are all pretty.  Nice, straight lines or soft bell curves, without the sharp angles.

I know these pictures aren't representative of how my diabetes is controlled, on a day-to-day basis.  There are way more times that I'm muttering "You stupid jerkface pancreas ..." than moments when I want to whip out my camera and take a snapshot for posterity.  But I like having these happier photos outnumber the ones that make me grimace, because when I need a lift, it's nice to have a catalog to draw from.  This is what I chose to document, visually, because it inspires me to earn this photo opportunity again, you know?


I chose to document this, because it made me feel good.

May will mark the end of my seventh year blogging at SUM (and starts the eighth year - jeepers), and when I look back through the archives, I'm weirdly proud to see a diversity in what's documented.  There are some really high moments (high as in "emotionally high," not "OMG, how did that 312 mg/dL sneak in there?" high), like when the Bird was born or when Chris and I got married.  And then there are low moments, like trying to be a strong advocate for PWDs while going through burnout, or when blue candles start peppering our Facebook feeds

And then I look at other people's blogs (holy crap, there are a lot of us!), and see that they're chronicling the good, bad, and decidedly 'eh' of life with diabetes.  The real stuff.  It's crazy how honest we are with the Internet.  I see people writing about things online that they might not be sharing with their doctor.  Or their coworkers.  Or their very closest friends. But it's shared here, and there's a power to sharing our stories.

I'm amazed at what we chose to document, as a community.  From celebrations of a no-hitter to scoring a quality pair of blue shoes, to difficult moments of feeling burnt out and admitting that we're struggling, what we document shows our strength as a community.  We're not afraid to share the stuff that really scares us, or empowers us, and we have one another to mark different milestones with.  What we share, as a global community, could help any one of us improve our health, emotionally and physically. 

Diabetes isn't a perfect math where you can just solve for X.  Usually, we're solving for "why."  And part of that equation is acknowledging, and appreciating, the sum of our community and what we document, every day.

January 23, 2012

Diabetes Burnout.

I've been slogging through some diabetes burnout over the last few months, but I'm starting to feel much better.  Things aren't perfect (Are they ever? Answer: Nope), but I've finally reached that point where I'm completely tuned in, rejecting guilt, and feeling like I'm on my way back to better diabetes control.  It's as much an emotional thing as it is a physiological one, and this video is about crawling out of the (primordial, most likely caramel-flavored) diabetes burnout sludge. 

Small steps are what move me forward best.  What helps you start stepping out of diabetes burnout moments?

October 17, 2011

To Palooze.

to palooze: v. the act of people with malfunctioning pancrei and their caregivers coming together for cupcakes, support, and fun

In the last few weeks, I've had the pleasure of meeting some old friends for the first time.  (That may sound like a peculiar sentence, but anyone who is part of the diabetes community and has found themselves immersed in a deep discussion about the emotional impact of this disease with an otherwise complete stranger understands the connection between PWD.) 

A few weeks ago, in Boston, I had dinner with Harry Thompson.  (He's @harrythompson on Twitter.)  Our diabetes is about the same age, and our daughters are, too.  Our spouses are supportive and amazing, and our collective appreciation for a good pun is unparalleled.  We spent a few hours exploring Boston and the North End, and we drank cappuccinos made from an old-fashioned coffee robot.  (More on that some other time, because if I try to explain it here, I'm sure to become confused again.)  But it wasn't weird ... it was comfortable, despite the fact that we hadn't met in person until that night.  Harry is awesome, in every freaking way.  (No photo, though, which I'm regretting.  We just forgot!)

And over this past weekend, I trekked into New York City with Briley and Karen to meet up with Simon and a whole pile of other PWD for what's become this strange Simponpalooza phenomenon.  It's hard to explain how and why people with diabetes forge a friendship that's instant and lifelong, despite differences.  It's harder still to explain to people why a man would want to fly halfway around the world to meet a bunch of strangers. 

But when you see photos, and read people's posts, and see videos, and take into account how much love is found in a disease that hurts so much sometimes, it makes more sense. 

I love that he has, like, a LOGO.
The "tour book," which served kind of as a yearbook for Simon's trip to NYC


Kerri, Jeff, and Briley, and Jeff OWNS this shot.  Owns it.


MOST of the group (because Kelly came running in seconds after the shutter clicked)

Kerri and Simon.  Simon says, "Look happy!"
"Simon says ... be happy!"

Actually, it makes perfect sense.

Thanks for coming to spend time with us, Simon.  And thank you to everyone who writes about the friendships found in the diabetes community.  Diabetes isn't exactly known for "giving back," but the community of people who live with it are

(More photos on Flickr here.)

October 16, 2011

Snapshots: Pump'kin.

No, I didn't waste an infusion set, silly.  I ripped this one out of myself and then stuck it into a pumpkin.  Sanitary!!

What do you mean, you don't know which one is mine?

September 29, 2011

Diabetes Terms of Endearment eBook!

First off, you guys, as an online collective, RULE because without your input and perspectives and laughter, this compilation wouldn't be possible.  So THANK YOU for being open to this silly idea, and for sharing your own diabetes terms of endearment over the last few years.

Secondly, Meredith is a badass designer, and her fast hands and sparkly shoes made a woefully plain Word document into something right pretty.

Thirdly, Kim Vlasnik knows her way around a unicorn (WHAT?), and her awesome skills brought a little glitter and visual stimulation to this project.  

And fourthishly, Abby Bayer is a patient and tolerant editorial assistant who helped me compile and wordsmith these terms.  Without her, I'd be sunk.

So, with their help, and yours, we finally have the compiled Diabetes Terms of Endearment, as a pretty little eBook with the terms and jargon that only PWD and those who care for them can really understand (and now you can download it and laugh at it.  Or color.  Or show to your friends when you're all "no-hitter" and they're all "What does that mean?").


This project is constantly growing and changing, so be on the lookout for new editions as our community moves forward.  For now, can we please focus on the fact that the unicorn is on a Cakebook Pro???

September 16, 2011

30 Things About My Invisible Illness: 2011.

This week is Invisible Illness Week, and type 1 diabetes is definitely in that "invisible" category.  I wanted to participate in this week's events, but a little Birdy and a little eyeball set me back a bit, productivity-wise.  So I'm defaulting to my favorite blog fodder:  a meme

Back in 2009, I did the 30 Things About My Invisible Illness meme, and I'm curious to see how much has changed in the last two years.  Bring out your memes!

1. The illness I live with is: type 1 diabetes
2. I was diagnosed with it in the year:  1986
3. But I had symptoms since: 1985
4. The biggest adjustment I’ve had to make is: ... this is a trick question. I don't remember the "before" diabetes moments in my life, so I've been adjusting my schedule, decisions ... life to diabetes for the last 25 years.
5. Most people assume: that I did something to cause it.  Or that it's "no big deal."  Or that after my pregnancy was over, my diabetes would go away.  Or that I "can't eat that." Or that the insulin pump and the CGM automatically regulate my blood sugars, leaving me sitting by the pool and sipping mango margaritas all day long while my blood sugars roll between 90 - 115 mg/dL.  ( 
6. The hardest part about mornings are: when there isn't time to make coffee.  (What, it's not all diabetes!)
7. My favorite medical TV show is: Glee?
8. A gadget I couldn’t live without is: Toss up between my insulin pump, Dexcom, and Macbook.  Those three things are my best inanimate friends all the livelong day.
9. The hardest part about nights are: being a little anxious that I'll have a blood sugar issue that makes the morning disappear.
10. Each day I take 1 pill & a billion vitamins.  And I infuse insulin 24/7.  (The meme said "no comments" here, but diabetes maintenance drugs are more than worth mentioning.)
11. Regarding alternative treatments I: believe that holistic health and and nurturing the emotional self is just as crucial as daily insulin doses.  But I don't have other alternatives to insulin.  It's kind of the missing link.
12. If I had to choose between an invisible illness or visible I would choose:  While I am sometimes frustrated that PWD (people with diabetes) don't "look worth curing," I would much, much rather feel good and look healthy than to have tangible, outward symptoms of my medical condition.  I appreciate being incognito with my diabetes as much as I can. 
13. Regarding working and career:  I used to just "work."  Now I have a career, and a passion, and I credit that to the influence of my diabetes.  Can't lie.
14. People would be surprised to know: that I don't talk about diabetes all the time to my real life friends.  Actually, I hardly bring it up.
15. The hardest thing to accept about my new reality has been: that I don't remember the "old reality."  I'm a little moody about that, sometimes.
16. Something I never thought I could do with my illness that I did was: have a baby.  (Boo.  Yeah.)
17. The commercials about my illness: are just now starting to resonate for me.  Prior to the new class of commercials that speak to the type 1 community, I just couldn't get into that oatmeal guy from Cocoon.
18. Something I really miss doing since I was diagnosed is: making my own insulin.
19. It was really hard to have to give up: ... hmm.  I don't think I've given anything up because of diabetes.  To the contrary - I think I've worked harder and earned more (emotionally) due to this mess.  :)
20. A new hobby I have taken up since my diagnosis is: caring about my health.
21. If I could have one day of feeling normal again I would: just relax.  And revisit the mango margarita thing.
22. My illness has taught me: that "control" is a state of mind. 
23. Want to know a secret? One thing people say that gets under my skin is: "You can't eat/do/think/be that."  Hey, want to know a secret?  I CAN.
24. But I love it when people: love me for me, and not because of or despite diabetes.
25. My favorite motto, scripture, quote that gets me through tough times is: Don't eat fructose snow?
26. When someone is diagnosed I’d like to tell them: that they aren't alone.  And there is a very good, very full life, even after diagnosis.
27. Something that has surprised me about living with an illness is: that there are a lot of other people who are living with this illness, too.
28. The nicest thing someone did for me when I wasn’t feeling well was: not say, "What did you do?"  As if I caused the whole not-feeling-well moment.
29. I’m involved with Invisible Illness Week because: if we're not involved, our disease remains invisible.
30. The fact that you read this list makes me feel: like you have an appreciation for life with diabetes, and that a small part of your brain is thinking about doing this meme, too.  (DO IT!)


September 06, 2011

Back To School.

I want one of these.  With a big, fluffy kitten on the front.  Drinking coffee.Most of the Rhode Island schools are back in session today (a few days later than usual, thanks to the power of Ms. Irene), and I'm missing that "back to school" feeling.  School shopping with my mother, back when i was in grade school, was awesome because I'd always get notebooks, pens, and a new Trapper Keeper.  I loved the way the new notebooks smelled, and how a new pen would write, and damn if that Trapper Keeper Velcro wasn't the best in that first week of school.

New school supplies made me feel organized.  I liked that "clean slate" feeling, like I was given the right to let go of the past and start fresh.

I kind of need that again.

I'm not in a patch of diabetes burnout, so much as I'm in a patch of Mega Rut.  In this Mega Rut, I have picked up some very bad habits and they are proving to be difficult to shake.  Like ...

Not sleeping.  I love to sleep.  I love that feeling of laying down at night and tucking myself in underneath the down comforter.  I love a cold room, a cold pillow, and a warm husband.  I love not looking like I was dragged through town by a pony.  So why am I not sleeping?  Could it be the early mornings with the Bird, then the lack of work done throughout the day due to Bird-Watching, and then the late nights where I try to catch up on work?  The baggage under my eyes would cost me a lot if I had to check it for travel.

Not eating.  This sounds like a good weight loss method, in theory, but in practice, it's doing nothing but slowing my metabolism down.  On the average morning, it's almost noon before I've eaten something, despite having woken up with the baby around 7 am.  This makes me hungry, sluggish, and grumpy way too regularly (but it has proven to me that my morning basals are finally accurate and I can roll around with an in-range, flatlined CGM for several hours).  It also makes my morning pot cup of coffee send me to CrazyTown, where I'm so drunk on coffee that the laundry folds itself when I stare at it hard enough.

Being unorganized.  I seriously need that Trapper Keeper, because my to do list is long, scattered, and very hard to keep track of.  If it weren't for my desk calendar, reminder alarms set on my cell phone, and Abby, my mind would be a flooded.  As it stands now, my mind is hovering around the "class 2 rapids" status, but this fall is proving to be a very busy one, so I need to get my post-its in order.

Having a love/hate relationship with my inbox.  I love email.  I read every single one, and in my mind, I write these long, detailed responses with photos attached and iTunes recommendations.  Instead, I read the email and then draft up the response in my head while I take a conference call or empty the dishwasher.  And then I never send that lovely response, instead opting for one that's a few sentences and usually starts and ends with "I'm sorry I'm so late in responding!" 

Paying attention to Dex.  I am wearing the Dexcom 24/7 (and have been for over two years now), but I've been a little lazy with it, of late.  In the last two weeks, I've left the house twice without the receiver, and I didn't notice for another hour after I returned home.  (That means I wasn't checking it, which isn't a good trend for me.  The closer I keep tabs on that Dex graph, the better my blood sugars run.)  What's the point of wearing the sensor if I don't make use of the data?

So there are my current bad habits, but now what?  I need a bad habit bootcamp.  Or that there Trapper Keeper.  Either way, recognizing these issues is the first step.  Now that they're sitting here, in a list in front of my face, I need to do something about them.

School starts today for most of the state, and I'm taking a cue from their clean-slatedness.  Starting over is easy when you leave the baggage behind (or at least the baggage that's not residing under my eyes).  These are changes that need to be made and can be made easily, if I put my scattered mind to it.  ;)

July 27, 2011

Overheard: The Mothership.

My alien transmitter, which speaks directly to the mothership.  Clearly."Mom, that lady has special powers and is an alien.  I know because I saw her alien transmitter in her pocket and it has wires and it talks directly to her body using that tube.  I saw it.  She can't hide from me because I saw it and it looked that's how she communicates with the mothership but she's safe and she didn't seem scared, right?"

It's at that point that I felt the need to explain to the eight year old boy's mother that it was an insulin pump.

July 19, 2011

CWD: Parenting With Type 1 Diabetes.

Lead by Korey Hood and Stefan Rubin, the Parenting with Type 1 Diabetes session at Friends for Life was aiming to touch upon the different challenges of being a parent with type 1 diabetes, instead of the concentration on parenting a child with type 1 diabetes that Children With Diabetes was once known for.  This was my first year attending this session, and I sat between two of my best friends in the diabetes community - Scott and George.

"So thanks for coming, you guys.  We're here to talk about parenting with type 1 diabetes," said Korey.

At this point, people started doing introductions.  "Hi, I'm So-and-So and I was diagnosed with diabetes in 1998."  or "I've been diabetic for 16 years and I have three children."  Only introductions.  That's it. 

So why was I already crying?

I didn't expect to feel the way I did during this session.  Instantly, I was completely overcome with emotion.  And not in a quiet, just-a-few-tears-escaping sort of way.  Instead, I was a blubbering mess, sniffling and snarfing and wiping my nose on my sleeve.  It was this intense rush of emotions that I didn't even know I had ever thought about, never mind felt overcome by.  

The group talked about their diagnosis, and their decision to have children.  They talked about what it's like to have a low blood sugar affect plans to go camping.  They talked about how their children react to diabetes, and what inspires them to keep plugging ahead on their daily management.

One woman caused me to have to leave my seat and grab a box of tissue to keep for my very own from the back of the room.  "I was the only person with type 1 diabetes that I knew ... until my son was diagnosed."

I couldn't contribute.  I could barely catch my breath.  And it was embarrassing.  My daughter is only 15 months old.  She doesn't know much about my diabetes, save for the fact that I have my own personal remote controls that she wants to press all the buttons on.  She doesn't understand why I sometimes don't share my snacks.  Or why I can't pick her up every time she wants me to.  She doesn't understand now, but eventually she will.What you so worried about, Mama?

And I think that's what grabbed me and held me.  Before BSparl was born, I planned for her.  I planned and worked to become the healthiest I could be, and I loved her long before I carried her inside of me.  And then she was born, and the focus became adjusting to life as her mommy and as part of a family of three instead of two.  It wasn't until recently that I felt comfortable as a mom - used to it - and my heart finally allowed me to feel something other than the newness of motherhood.

I wanted to introduce myself to the group.  I wanted to tell them that I, too, was a veteran of type 1 but not so much of an experienced mom.  I wanted to ask them how they made sure their kids weren't overwhelmed by their diabetes.  And the question I wanted answered more than anything kept catching in my throat:  How do I explain this to my daughter?  But I couldn't ask.  I just sat there and listened.  And cried like a baby.  And thought about the fat little Birdy who was waiting for me at home in Rhode Island, flapping her little wings and getting ready to fly.

I love my family, extended and otherwise.

After the session was over, we spilled out into the hallway.  George caught me up in a hug and I just let let it all go.  The fear and that heavy feeling of "forever," coupled with a love for my daughter that I didn't truly understand until I thought about diabetes taking me from her.  I knew he understood.  I knew that Scott understood, too.  And so did everyone else who has raised a family while taking care of their own diabetes.  These friends of mine were parents with type 1, with children who were much more grown up than my little bird.  I knew that if they could do this, I could, too.  And having met both George's and Scott's beautiful and loving families, it gave me hope that my own little girl would grow up to love me just as much as I love her.

This session was the most emotional I have ever been in public, but it felt okay.  Safe.  The only casualty was George's shirt, which ended up with a smudge of mascara.  And perhaps some tears.  Or snot.  (Sorry, G.)

I saw Korey in the hotel later on, and apologized to him for being an emotional wreck in his session.  

"It's okay.  I totally understand."  But as soon as he started to talk, I started crying again.

"I'm sorry, Korey!  I think you're like a trigger for me.  I'll just email you."

This session was intimate.  And it hit a nerve on me that I didn't even know was there.  But I felt better afterwards, like I had experienced a therapeutic breakthrough, somehow bringing me even closer to both my family by blood and my family by blood sugar.

Thank you, George and Scott, for being the kinds of parents I hope to become.

March 17, 2011

St. Patrick's Day Automatically Equals Drinking?

Oh, I love this photo.In the spirit of St. Patrick's Day - which is somehow all about drinking and has very little to do with the fine Irish heritage of people with wonderful accents and a delicious cereal -  I'm revisiting a post about diabetes and alcohol, while I work on a recap of JDRF's Government Day activities.  And also, a little Mills Lane goes a long way.  Also, also, I finally figured out how to make the font green.  That was about six years in the making.

* * *

The microphone drops down and Mills Lane plucks it out of the sky.

“In this corner, bringing a bevy of boluses and carbonated carbohydrate content, wearing Gold Shorts and a lime wedge, weighing in at about 12 oz is the mysterious new challenger, La Corona!” 

He raises his fists in the air and burps.

“And in this corner, The Titan of Tight Control, the A1c Ally, weighing in at about 9 oz and made up of cheap vodka, cranberry juice, and a splash of Tropicana orange juice – the reigning champion, The Mighty Madras!”

Madras also pumps his fists, holding tight to a thin, red straw and a test strip.

“Gentlemen, this is the title match.  Nothing below 50 mg/dl and nothing, nothing above 250 mg/dl – do you hear me?  I want a good, clean fight.  Now let’s get it on!”

Bell rings.

“And the Corona lurches forward right away, fists flailing! Look at those carbs, folks!  The Mighty Madras is backing off a bit – I can hear those ice cubes clanking against the side of him!  Corona reels back, swings out and oooooh! A solid hit to the jaw of the Madras!  He’s falling back!  He’s staggering!  Could he be out already?  Is this newcomer going to knock the ol’ Tried and True out of the ring? 

The Madras is leaning against the ropes … he looks exhausted!  Only a few minutes into this fight and the Cold Corona definitely has the upper hand!  This could be it! 

… But wait, what’s this I see?  Yes, the Mighty Madras is on his feet!  He’s taken out a blood glucose meter from his pocket.  He’s looking to test Kerri – judges?  Are we allowing this?  Yes, the judges are allowing a blood test.  And Kerri, after having two of the icy cold Coronas, is up to 253 md/gl!  Her bolus was grossly under estimated!  They’re flashing the results across the marquee – indeed, Kerri is high and the Corona can’t stop staring at the number! 

And – ooooh! – the Mighty Madras has snuck in a jab while the Corona isn’t paying attention!  He’s now pummeling the Corona!  There’s lime juice everywhere, my friends … this is truly a gruesome beating!”

Corona is leaning against the ropes, exhausted from the beating.  The Madras reels back his fist, angry that Kerri didn’t measure correctly for her drinks and is now high as a kite.  He knows he would have been easier to count.  He knows he could have let Kerri enjoy steadier blood sugars and a night out.  Why did she pick Corona?  Was it the price?  Was it the fact that “out having a beer” is what she preferred over a more pretentious mixed drink?  Madras didn’t know.  He didn’t care.  All he knew is that the Corona was horning in on his woman and he wasn’t standing for it.

“And the Madras has brought out a bottle of insulin!!  And OH MY GOD he’s cracked it over the Corona’s head!  Corona is out!  It’s a knock-out, dear viewers!  This fight is over!  Over!”

Corona falls flat against the mat, out cold.  The ring smells of sweat and insulin.  Mills Lane grabs the championship belt and thrusts it into Madras’s hand, declaring him “Winnah!”  Madras, bleeding profusely from the eye and crying, raises the belt to the air and yells, “Kerri!  Kerri!”  Kerri comes running from the stands, meter in hand, and stands in front of him as she tests.  “153 mg/dl.  I’m coming down.  I’ll be more careful next time I drink high-carb beers, O Mighty Madras.  I promise!”

They embrace.  The “Rocky” theme swells in the background.  Kerri decides that the next time she wants to have a beer, she needs to measure more carefully and bolus with more precision.  She also discovers that she has run this storyline into the ground.

Mills Lane wipes the tears from his eyes.  “I love a good fight.”

Happy St. Patty's Day, all!  Be safe, regardless of what you're up to today.

March 09, 2011

Advanced Avoidance Technique.

I received the reminder call.  I discussed my schedule that week with my husband and didn't bring it up.  And the letter from their office still remains stuck to the calendar page.  (Not to mention, the missed appointment cost me $25, to boot.)  But I never made it to Joslin to have my eyes checked again.

And I don't want to go.

If it seems like I've had an eye dilation like every three months, it's because I have.  My eyes were dilated several times during my pregnancy to track the progression of my then-mild and now-moderate non-proliferative retinopathy, and this eyeball issue was the main reason I ended up delivering my bird via c-section.  (The pre-eclampsia didn't help matters much, either.  Yay for ... stuff?)  

I fully realize that what I need to do is pick up the phone, call the eye clinic, and make an appointment for a dilated eye exam.  I know this.  And later this afternoon, I will make that phone call. 

It's just sometimes I find all this crap really tedious.  Not so much the little things, like testing my blood sugar throughout the day, changing out the insulin pump ever few days, and popping that blood pressure pill every night before bed.  That stuff doesn't make me bonkers. 

It's more the Big Stuff.  The eye exams.  The endocrinologist appointments.  The hours spend combing through insurance EOBs and spending even more time discussing this paperwork and battling with insurance claim specialists who think 10 test strips a day is "excessive."  It's making log books and calling the mail order pharmacy.  It's moving the fax machine from the office into the living room (because we neglected to hook up the office phone jack) so that I can fax documents to our insurance company.  It's going online to the insurance website and jumping through all the search hoops to find a doctor within a 30 mile radius who takes both my insurance AND new patients.  Taking a whole day to trek up to Boston to sit with my endocrinologist for an hour; another day to have the dilation drops plunked in and to have to wrangle someone to drive me home afterward.  It's a day away from my baby.  And from the work I enjoy doing.  And a day that someone else has to either watch BSparl or drive me or whatever.  It's a day that makes me resent diabetes just enough.  And it makes me admittedly grumpy because I really don't want to spend the day doing crap I don't enjoy.

Every time I re-find this picture, it reminds me how far we've come with diabetes, but also how much HASN'T changed.
An image from an older post about guilt, but the words I chose are blunt,
and I think if I made this same list today, it would read the same.


(And before you say it, I know I could see someone closer to home, but it's hard to be so close, yet so far from the doctors I know and trust and who are best suited to care for any complications that may arise.  And before you say it, I know it's pointless to have access when I don't actually go to the appointment.  And before you say that you weren't thinking that, let's get some iced coffee and talk about Spring Training, instead.  And before you say you like the Yankees, I'll kindly refer you to my husband and my editorial assistant, who share your bad taste.) 

The time it takes to manage diabetes on a day-to-day basis isn't tremendous.  Constant, yes, but not overwhelming most of the time.  But taking time and sitting in the car and in waiting rooms and hoping they'll call my name first so I can let them stick a needle in my arm and then pay the garage attendant and then drive home for two hours?  (Sometimes with dilated eyes?)  It is so worth it for my health to make these appointments and stick with them.  But sometimes it feels like such a pain in the ass that I'd rather skip the appointment entirely and spend a few hours playing blocks with BSparl. 

And then I realize that in order to play blocks, or to travel for work, or to be able to make the bed and run the laundry and enjoy dinner out with my friends, I need to stay healthy. 

... sigh.  Fine.  I'll make the appointment.

February 22, 2011

Diabetes Terms of Endearment: Third Edition.

Diabetes Terms of Endearment:  Third EditionPeople living with and caring for diabetes have their own special language; it's a language that includes terms like "no-hitter" and "tsunami" that people without diabetes wouldn't understand, but those with it nod their heads and say "Yup.  Same here."  This dictionary is compiled from input from the fabulous diabetes community and is definitely a collaborative effort. 

Bring on the dTOES (Diabetes Terms of Endearment): Third Edition!!

*   *   *

A1C twins
Two PWDs having the same A1C within the same week of endo appts

"Are You Unplugged?"
How to intimately ask if your partner has unhooked his/her pump site.  A way of subtly asking if it's sexy time.

Baby Bear number
When your number is in target, or juuuuuust right
ex. “It's almost time for lunch, go ahead and do a stick. What'd you get? Hey, great, you're Baby Bear!”

Basaling

The act or process of working out kinks in the basal rates 
ex.  “I was up half the night basaling.” or “We're skipping breakfast today because we're basaling.”

Bat Belt
The belt of a PWD (person with diabetes) who has all their diabetic accoutrements worn about their waist.  May include insulin pump, Dexcom receiver, and that grappling hook thing Batman uses to climb over buildings.


Beeg
The oral version of the abbreviation "BG" (for "blood glucose")  
ex.  “I’m checking my beeg!”

Bionic parts
A method of referring to diabetes technology instruments.  These items are often found on the aforementioned "Bat Belt."

Bolus-worthy
Food that is enticing enough that we'd take a ton insulin for it, despite any blood sugar results
ex. “That chocolate-covered cupcake looks bolus-worthy

BS-brain
aka "Blood sugar brain," the fog, agitation that seems to last all day and affects everything after a bad low or high blood sugar

Buddy Batteries

AAA Energizer pump batteries solely reserved for use in diabetes devices.  A lack of Buddy Batteries may result in an incident of D-Postal.

Case of the Ms
When your continuous glucose monitor graph looks like giant M's.  (Editor's note:  M's or W's.)

Case of the Shakies
A low blood sugar episode that causes shakiness


CDD
aka "Crappy Diabetes Day", when your blood sugar goes from 43 mg/dl in the morning, to 37 mg/dl an hour later, to 243 mg/dl at noon, to 321 mg/dl at 3 pm, back to 54 mg/dl at dinner, plus you might have an occlusion as well just to top things off.  See also: Gluco-coaster

Chaser
The bolus given when a PWD consumes a copious amount of food to treat a low blood sugar

Checka
A cuter way to reference a blood sugar check.  
ex.  “Time to checka your blood, mommy?”

Cluster-Beep
When you have to pull every single device out, from cell phone to CGMs, to figure out which one is beeping, buzzing, or just being a general pain in the arse. (It also applies to having to pull the same device out twice in 30 seconds)

D'Ambien experience
One of those middle of the night lows where you can't remember what you ate or drank, or how much, as well as any conversations you had. Quite similar to someone's night who takes Ambien.

D-Dumb
Term applied to people who just don’t "get" diabetes

D-Mom/D-Mama
The mother of a kid with diabetes, taking the disease on as their own.  See also:  Surrogate Pancreas

D-Postal

The act of lashing out as a result of societal misunderstandings of diabetes.  
ex. "You can’t possibly understand how hard it is living with diabetes, so I’d advise you to step down before I start beating you with my pump and a fist full of glucose tabs."

Diabadass
A PWD who does something awesome that non-badasses think diabetes should stop them from doing (e.g. having babies, biking across the country, playing in the NFL). See also: most members of the DOC

Diabetonese

The language of managing this madness! See also: all three editions of Diabetes Terms of Endearment

Diabuddy

A real life friend who also happens to have diabetes, too

Dia-
(can be an adjective, noun or verb) A prefix applied to any word when diabetes impacts said word.  Examples include "diafail," "diawin," and "diabadass."  Often found as Twitter hashtags and in the Clara Barton Camp dining hall conversations.
ex.  "I can't believe I forgot to bolus for the seven pancakes I ate for breakfast ... diafail!"

Diasecret
Those diabetes-related secrets that you have never told anyone

Diaversary
The anniversary of your diagnoses date, (aka the time you stick it to diabetes no matter what the blood glucose number is.  ex “We're having cake for dessert to celebrate your diaversary. You're 250? Then we'll just have to bolus extra.")

Disco Boobs
When a pump is hidden between a PWDs breasts, that moment of when it lights up and starts beeping, giving the chest area a look not unlike a disco ball.  See also: Iron Man

DOS Bag
aka "The D-Oh-Sh*t bag," the bag where a PWD carries around all of their emergency supplies (it goes everywhere) - extra infusion sets, insulin, extra strips, back up meter, juice, tabs, Glucagon, etc

Double Downing
When your continues glucose monitor graph has two down arrows, telling you you’re dropping fast

Double Rainbow Day
Means a line on the continuous glucose monitor that is inexplicably good and deserves ecstatic celebration.  See also:  What does it MEAN?

DSMA
aka #dsma aka Diabetes Social Media Advocacy.  Refers to a Twitter chat that takes place every Wednesday night at 9 pm ET, where members of the diabetes online community talk about diabetes lifestyle issues

E.T.

When your pump is still lit up inside your shirt

Exercise
Any form of physical activity, which most often effects blood sugar levels directly.  Such activities that may affect blood sugars include running, tennis, shopping, sexy moments, parking your car, lifting a pencil, and sometimes just the mere thought of exercise.

Flatlining
When your blood sugar is holding steady as seen on a continuous glucose monitor graph (see also: no-hitter)

Frankenbutt
When an old pump site is on the left side of your backside and you place the new one on the right, leaving the bum looking like Frankenstein’s neck with the bolts sticking out

Free Shower Day
Taking a shower on the day that your infusion set and/or CGM sensor are being swapped out, leaving your skin site-free

Glucocoaster
A crazy CGM graph.  Antonym:  no-hitter

Glucover
Diabetic version of a hangover. Is the after-affect of a bad late night low. Most often includes headaches and a bad taste of old orange juice and decaying glucose in your mouth. Cracker and candy wrappers and empty containers of food are often found lying around the person who is having the glucover. Most remedies include: brushing of the teeth, heavy applications of makeup to remove bags under eyes, Tylenol, and healthy binge eating.

Hard Low
There is a low and then there is a HARD LOW.  Most often coupled with standing with the refrigerator door open, eating the majority of a pound cake, and washing it down with half a bottle of grape juice.  Often followed by a Chaser

Hooked
When going about normal, everyday life and an inanimate object jumps out and grabs at an infusion set tubing, resulting in pain and/or cursing and/or the pulling out of said infusion set

H.A.B.
Huge Ass Bolus, usually taken in conjunction with huge ass meal

Insulin-Mama
The name my family calls me since my daughter regularly follows me through the house carrying crackers in her hand, saying "Insulin, Mama!"

Juicer
Another term for "insulin pump"

Lazy River Ride
An in-target CGM graph.  See also: flat-liner and no-hitter

Leaning
The act of standing quietly while low trying to hide a low blood sugar "lean" and someone notices you slightly tipping over

Liver Dump
When your blood glucose rebounds after a hard low (usually one in the 40s or below)
ex. "Hey, Mr. Liver ... thanks for the help, but it is a little too much and a little too late."

Make a Ladybug
To form that giant drop of blood that the old glucose meters used to require

Morning Boost
Refers to drinking coffee and the subsequent blood glucose spike the caffeine offers up

Mother-Birding
When a D'Rent feeds their young child glucose tabs or a sugar source

No-Hitter
A time period in which a diabetic does not hit their high or low threshold on their CGM. For a Dexcom user, they must be without any alarms during the entire day, and the day must be at least 24 hours. A diabetic who prevents their blood sugars from reaching a threshold is said to have "bolused a no-hitter."

No-No Cupboard
Where you (or your mom) keeps all your diabetes snacks that are off limits to others

Number
The glucose reading on the meter.  "Number" no longer refers to a phone number, jersey number, or the number you’re holding in line at the deli counter

On the Rise

When you're blood sugar has been low for so long, and then FINALLY shows signs of coming back up ex. "72. Thank goodness! I'm on the rise!"

Poker
Lancing device, also known as a "pokey"

Pump Envy

The feeling of T2/1'ers who are taking insulin injections 4+ times per day but do not qualify to receive a pump due to insurance issues or having a MiniMed or Animas or whatever-brand but coveting another brand or newer model

Pump-It-Up

What to do when you see a dessert that you just can’t resist (while simultaneously doing the raise-the-roof gesture)

SDD
aka "Shitty Diabetes Day."  May include any of and more than the following: feeling terrible due to blood sugar fluctuations, running out of low blood sugar treatment methods, needing to skip exercise due to blood sugar issues, and any and al instances that lend towards a "Diabetes: 1; Me: 0" day.

Sleep Treating
The act of bolusing, changing basal rates, or silencing ones CGM in the middle of the night without actually waking up to do so…(makes for interesting mornings…)

Stick
When ‘blood sugar test’ gets to be a mouthful

Sugar Baby
A name to call someone with diabetes, such as your daughter

Sugar Bloods
A more fun way to say blood sugar (especially with a southern accent)

Sugar Buddies
When you and another both have diabetes.  See also:  Diabuddies

Sugar Hang
The horrible headache that comes after a bad low or high

Sugar-Soil
When you get sugar on your fingers after treating a low which results in a falsely high re-check

Tsunami

A result of over treating a serious low blood sugar
ex. "Blood sugar at 38 mg/dl, can't hardly walk, grab the quart of OJ, not following the 15 rule. Result: two hours later a Tsunami blood sugar of 300 mg/dl.

Venom

What spews from our mouth when our blood sugar is off the charts high and we are less than sweet

"What’s off Limits?"
How to intimately ask where your partner’s pump site/continuous glucose monitor are located on the body
 
Winter Muted
When a pump or continuous glucose monitor is concealed under so many layers of clothes, its beeps are inaudible

Woodchuck
Safe word for “check your sugar” if you’re acting bitchy during a low blood sugar moment
(Editor's note:  Sounds like it could be "Wood-ya-chuck your blood sugar?"  PUNS!)

*   *   *

The first edition of dTOEs can be found on the old SUM blog, and the second edition can be found here. A compilation eBook will be available soon, with all three editions (and some bonus new terms) included!  Should be up in a few days.  Thanks to everyone for their input, and for Abby's help in compiling this edition.  :)

February 17, 2011

Kerri-Proofing.

The kid is mobile now, and with that mobility comes the baby-proofing of our home.  We have those little electrical socket covers on each outlet, the coffee table corners are capped with squishy edges, and a big ol' gate at the base of our staircase is locked and loaded.  So now, anything that BSparl shouldn't touch for fear of hurting herself is as carefully guarded as possible.

And I wish I could say the same for me.

Will power is not my middle name.  (It's "Morrone," switched from "Lynn" when I got married.)  I'm good when it comes to action-oriented plans, like resolving to test my blood sugar more often throughout the day, or making sure I exercise at least four times a week.  These plans involve getting up and doing something, and I'm motivated when it comes to checking that box. 

But the plan to NOT do something?  Little more challenging.  

Food has always been a bit of an issue for me.  Not surprising, since type 1 diabetes has a firm foothold in my dietary decisions and guilt about said decisions.  (Sneaking cookies?  I may have done that one or two ... thousand times as a kid.)  Growing up with type 1 diabetes and using the peaking insulins (NPH, Lente, UltraLente) that required timed meal structure, I was a card-carrying member of the "clean your plate or you will end up low" club.  It actually wasn't until I started using an insulin pump that I realized what "hungry" felt like, having been on an eating schedule for the previous seventeen years.  Adjusting to the fact that I didn't HAVE to eat was new.

In addition to that "Hey, hunger is confusing!" feeling, food is a confusing friend/enemy.  Frenemy.  Even at times when my blood sugars are completely in control and an Italian bread smothered in olive oil and salt indulgence-fest doesn't cause massive spikes, I still feel guilty about eating it.  Like someone is watching me, and I need to hurry up and swallow before they see me take the bread.  It's a very screwed up way to view something as fun and delicious as food, but it's a combination of the influence of diabetes on my food philosophy and the guilt assigned to something as benign as a banana.  (That, and how women are taught to view their bodies and their appetites of all kinds ... but that's a whole different post.)

Which brings me back to my problem:  not doing something. Avoiding certain foods at certain, inopportune diabetes times.  Not eating the bowl of pineapple when the Dexcom shows double arrows pointing up.  (Why IS it that high blood sugar equals ravenous hunger?  Seems like a cruel twist to me ...)  Not buying E.L. Fudge cookies.  And if you do buy them, not eating a whole sleeve on the ride home from the grocery store. 

Sometimes I want to Kerri-proof the kitchen.  

Maybe I should just stick an electrical socket cover in my mouth.

Can I Kerri-proof diabetes?  Or maybe diabetes-proof Kerri?

February 16, 2011

I See Pump People.

Navy Seal PWDs are everywhere.  LOOKOUT!A few weeks ago, Chris and BSparl and I went out to dinner.  Dining out with our little bird is a bit of a tangled experience, and we don't spend as much time people watching as we used to because we're very preoccupied with the baby wrangling. 

That night, though, we were sitting and settled and throwing gluten-free puffs (yes, all of us) around the dinner table like confetti when I saw this woman walk in with her family.  She settled her family in at the table, and then reached to remove her coat, revealing a beeper clipped to her pocket.

Only it was one of them fancypants beepers with the tubes and the buttons and the accompanying not-making-insulin pancreas.  Reckon it was an insulin pump.

Immediately, I wanted to swing mine over my head like a lasso and say "OMG lady, me too!!!"  I've had this feeling before, of wanting to sidle up next to someone and say, "I like your pump; want to see my pump?" but to me that sounds more like an awkward attempt to flirt instead of a moment of diabetes bonding.  Living in a very comfortable bubble of diabetes advocacy makes me think that everyone who has a visible "symptom" of diabetes wants to talk about it.  I have to remind myself that some people just plain don't want to talk about it.

But since I still wanted to say something, I targeted Chris instead.  

"Dude, 12 o'clock.  Actually, my 12 o'clock, your six o'clock.  Minimed pump on that lady."  I said to Chris without moving my lips, as if a pump sighting was a covert Navy Seals operation.

"Six o'clock?  Okay, do you guys know one another?  And why are you whispering?" he whispered back.

(I love that because she and I both wear pumps, we must know one another.  I've brought him right into this bubble with me.)

"No, I don't know her.  I have no idea who she is.  But I just saw her pump."  I paused, still whispering.  "And I was like a toddler, wanting to wave my arms around and say 'Pump! Pump!'"

He laughed.  The waitress came over to bring our food, and the two of us were immediately distracted by keeping BSparl's grabby little hands away from the hot plates. We had a nice dinner, and I sort of forgot about the fellow Navy Seal at the other table.

... Until we were leaving the restaurant, when I saw her glance at my hip (where my Animas Ping was tucked away), nudge her husband, and give a little nod. 

In my head, she whispered, "Dude, four o'clock.  Animas Ping.  Hooyah!"

February 10, 2011

From Abby: Standards of Care.

Note From Kerri:  Lows suck.  Larry Bird blood sugars shouldn't be making appearances in the wee hours of the morning.  And not waking up right away for these kinds of lows can be terrifying.  Abby (the Person) writes about a low that left her reeling and the superhuman strength of her wonderful mom.

*   *   *

8:00pm – 276 mg/dL (no idea why)

10:30pm – 288 mg/dL (negative ketones, and the correction bolus that ruined everything - give me a minute to explain)

12:00am – 120 mg/dL (3/4 bolus for a snack, and to bed I went)

1:45am – 33mg/dL (awesome)

I know why this happened. When I took that second correction at 10:30 pm, I thought to myself, “I might go low from this, but I feel like crud, and I’ll just eat a snack before I go to bed.” And so I did: a very small bowl of Raisin Bran cereal, only bolusing for 3/4 of it, and off to bed I went with a blood sugar of 120 mg/dL, feeling like I avoided that low.

Feeling pretty dia-successful.

When I woke up at 1:45 am feeling a little warmer than usual, but with no other symptoms, I decided I should probably check. Moms are badass and can lift like a million times their own weight. Ants are cool, too.

33mg/dL. (Editor's note:  Whoa, Larry Bird) 

Defeated. You win tonight, diabetes. A 6oz juice and a 19g granola bar later, I lay back in bed. And that’s when things got scary: seeing stars, extreme sweating, nausea, crying (which is new to me, and frankly I’m not a fan). I grabbed the glucose tab bottle, and obviously it was brand new and had that cannot-open-without-a-chain-saw plastic thing under the lid.

By this point I was freaking out. I stumbled into my mom's room (yes, I’m 23 and I live with my mom; times are tough, people and I’m a full time college student with two jobs, don’t judge me) where she saw the tears and the shaking hands and presumably my face sans any sort of color. She grabbed the bottle and ripped the plastic off with that “my daughter is in danger” sort of strength that I still don’t understand. All I could manage to eat were three glucose tabs.

I really thought I was going to die, like straight up fall on the floor (only with a blood sugar probably in a safe range at this point) and just die. The re-check showed me a 66mg/dL. Then I got really frustrated because I was almost back in range but I had EVERY low blood sugar symptom on the face of the earth, only on steroids. (For some reason updating my Facebook status and texting a few friends at this point seemed like a grand idea.) This is not the first time I haven’t woken up until I was under 40mg/dL. I’m sure it won’t be the last, thanks to my lack of a continuous glucose monitor. Actually, I take that back … I have a CGM, but I hate it. I try it at least once a month, I do everything by the books, and if I get one or two readings that are within 20 points of my finger stick, it’s a miracle. I’ll be starting a 7-day-trial of the Dexcom soon, and I already have an email into my endocrinologist asking her for one of my own.

The point of my story is to ask this question:  Why aren’t CGMs a standard of care for diabetes? I bet if I asked my friends who have diabetes for similar stories, I’d get a boatful.  (Then I would send that full boat to insurance companies and ask them if they’d rather dish out a few hundred dollars every month for their patients to have sensors and stay safe, or keep refusing us, keep making it a huge hassle to achieve safety, and instead keep sending me 87 million boxes of test strips that expire before I even think about opening them.) 

The technology is here, but there is clearly nobody working for those insurance companies that knows the first thing about the fear I’ll have when trying to fall asleep tonight.

*   *   *

What makes me nuts is that people who want and need a continuous glucose monitoring system still can't find coverage through their insurance companies.  We've come such a long way, technologically-speaking, and it's frustrating when a fellow PWD can't readily access that technology.  What insurance battles are you fighting?

February 09, 2011

A CGM Visual.

When I look at the graph on my Dexcom, I like to see a nice, flat line.  You know, like a bread stick (that would be flat if I had rotated it a bit in Photoshop but I forgot and now it looks a little like it's a rising blood sugar holy run on sentence AGAIN #Bes).  Imagine it flat:

A breadstick.  Not to be confused with "Breadsticks," which is from Glee.  And Glee is awesome.

But some days, my Dexcom graph looks a little less friendly, and more like a big ol' mess.  Like a rollercoaster:

I can't even look at roller coasters without thinking "Oh!  Diabetes!"

Or the top of the Arby's hat (that's on days when my blood sugars really kick my ass):
Arby's burgers gross me out.

Or that picture from The Little Prince where a snake devours an elephant and it looks like a hat:
One of my favorite books.  Kid had his own planet!

And there are some days when the stupid thing looks exactly like a giant letter M, having tea with a giant letter W:

Oh cut me some slack.  I suck at Photoshop.  But that M and that W do look delightfully happy, no?

I aim for no-hitters as often as I can, but it seems like tea parties are all the rage these days.  I need more breadsticks.  

(And now I'm seeing CGM graphs everywhere I look, and it's freaking me out.)

February 08, 2011

Happy.

Today is my birthday.  There's a good amount in my life that needs to be worked on, but there's so much that's great without effort.  Like my family.  And my littlest bird.  And all the support and inspiration I get from you guys.  I'm really grateful.

I love this kid.

And I am happy.

February 07, 2011

Postsecret.


I scrolled through this Sunday's PostSecret and this postcard submission jumped out at me because I saw diabetes written in invisible ink underneath that frosting.  (Also, the photo permalink URL included "onbackdiabetestype1forever," so that was a bit of a hint.)  And I realized, thankfully, that I don't hold any secrets about diabetes, because I've had the good fortune of this community to help me feel supported and empowered enough to deal with all my diabetes demons openly and unabashedly. 

I've had a few ideas for a non-diabetes related PostSecret postcard in my head for a few years now, and I took these pink cookies as a sign that 2011 is as good a time as any to let some things go.  PostSecret is kind of like Pandora's box, only the secrets that are released come from inside of you.  Like blogging, it's a unique kind of free therapy, and who can't use that every now and again?

Thanks for the inspiration, diabetes postcard writer. 

What would be on your PostSecret submission?  Feeling brave?  Leave an anonymous comment here, if you want.  Or submit your own PostSecret to Frank (does he have a last name, or is he like Cher?). 

December 21, 2010

Tangled.

I love my insulin pump (well, as much as you can enjoy anything that's used to manage a chronic disease), and it's a constant part of my daily routine.  It goes with me EVERYWHERE, from the car to the supermarket to the bathroom and to bed at night.  This pump is never more than a few feet away from me, and I keep close tabs on it.

And sometimes it keeps wicked close tabs on me.  See also:  tangled.

Have you ever found yourself wrapped up in a pump tubing hug?

December 14, 2010

Larry Bird, No One Invited You.

My symptoms of low blood sugar used to run the gamut:  numb mouth, dizziness, sweating, crying at will, shakiness, inability to see completely clearly but a heightened sense of hearing ... fun stuff.  The symptoms of a low blood sugar can really suck.

But you know what sucks even more?  Not having any symptoms at all.

A few days ago, I was making lunch for BSparl and trying to clean up the kitchen (never a good idea at the same time), and my hands felt a little fluttery.  But nothing really worth paying attention to for more than a second.  BSparl devoured her rice cereal and mushed up bananas and then she was down for her nap. 

As I closed her bedroom door, I heard the Dexcom BEEEEEEP!ing from the kitchen counter.  There's a different sound associated with the "low" and "high" alarm, and I was surprised to hear the low alarm sounding.

"I feel fine."  I said, matter-of-factly, but not sure I meant it.  I did feel just slightly ... off.  Abby (the cat) meowed as she circled around my ankles.  But a swipe with my blood sugar meter showed me at 33 mg/dl.

Oh come on, Larry. I love you, man, but not like this.  Not as a blood sugar.  

The problem was that I didn't feel low.  At all.  I didn't have even a whisper of a hint from my body that my blood sugar was rapidly heading towards chaos.  If it hadn't been for the Dexcom, I'm not sure I would have tested.

Instead, I found myself standing in front of the fridge and sucking down grape juice straight from the bottle.  (Note:  Don't drink the juice at my house.  I've licked all the bottles.)  Auto-pilot kicked in and I treated that 33 mg/dl as though I could feel every bit of it.

Oddly, I didn't start to feel low for another five minutes or so, when my blood sugar started to come up a bit.  Such a strange thing, but when I'm coming up from a Larry low (read:  in the 30's), it doesn't throttle me until my blood sugar starts the journey back upwards.  Around the 50 mg/dl mark, I started to hit the sweats, the adrenaline panic, and that weird, white fog of precision that envelopes me when I'm low. 

This lack of symptoms has me very nervous lately.  I know that my numbers have been both pinging and ponging all over creation lately, but it's downright creepy when I'm at a blood sugar so close to chaos and I feel like I could happily climb into my car and start driving, or pick up my daughter and start dancing, or wait just a little while longer before deciding to have a snack.  My body doesn't give me the hints I need anymore, and I'm not sure why. 

Diabetes is messing with my head.

My paranoid (and hyper-sensitive) Dexcom continues to wail even after I'm back up to 70 mg/dl, but I find the noise comforting.  I know I'm back in range, and I don't have that feeling of confusion or fogginess.   

"I feel fine," I said again, only this time I meant it.  

I wish every day could look like this.  But it, um, does not.  Lots of times, I see a big letter M.

December 08, 2010

Gaining Diabetes Independence.

Bridging the gap between being a child with diabetes and being an adult with diabetes.I spent some time with some parents of kids with diabetes this week (more on that in short bit), but part of what we talked about was that transition between being a "child with diabetes" to an "adult with diabetes."  

One of the biggest milestones for me as a transitioning child was earning my driver's license.  I wanted to drive more than anything else.  I wanted that freedom and that ability to go where I wanted and when I wanted, without that awkward "waiting for mom to pick me up" moment.  But my parents and I talked about how driving with diabetes was a huge responsibility, and it was completely understood that if I screwed with my diabetes management intentionally, the car keys wouldn't be resting in my hot little hand.  As I matured and got adjusted to the constantly shifting levels of responsibility that were required of me, the torch of diabetes responsibility started becoming more and more predominantly MINE.  

Abby talked with a few people with diabetes in her community about making that jump from "under parents' care exclusively" to taking ownership.  The responses were varied, which made me wonder how different this transition is, family-to-family:

Ashley Napear  (22 years old, 18 years with diabetes)
I know for me growing up, my doctor told me that I was not allowed to have an insulin pump until I could take care of my diabetes which meant me doing everything. I know this is different now because pumps are being given to kids at younger ages, but this is how it happened for me

Dylan Hoots (18 years old, 8 years with diabetes)
I know that when I reached a certain age ... even as young as fourteen, I unintentionally may have pushed my parents away from taking care of me because in the back of my mind I wanted to be self reliant and be able to take care of the disease on my own, however, through that they eventually never asked me about it and it led to a lot of burnout. But I think every kid wants to be independent; it's especially different for children with diabetes because it can be such a dangerous disease.

Amanda Devens (20 years old, 14 years with diabetes)

It was a sort of process, slowly I started to realize that I needed to do it on my own, pricking my finger, then taking shots, and then pump sites. Because well there was one day when I was at school - my mother used to show up and prick my finger because I was too scared to - but this day she didn't show up, and I knew it had to be done, and so I did it. And realized that it wasn't really THAT bad! :)

Alissa Carberry (20 years old, 11 years with diabetes)
It was definitely a process- started slowly and it picked up. I was diagnosed when I was 9 and initially let my parents do EVERYTHING- but within a few years I realized I couldn't hang out with my friends or do any "normal things" that an eleven or twelve year old girl wanted to do because of the struggles of giving injections and carb-counting. My parents and I would work out ways to ease out of my dependency, such as me checking my sugars and carb counting on my own, but I had to tell them so that they could log it. Eventually I started doing everything and loved the independence that went with it, only when I went through burnout periods did they help or when I was ketonic (essentially when I hit a roadblock or diafails occurred) Once I went on the pump I was self sufficient … my dad still tells me that he has NO idea how to work my pump!

Melissa Moulton (20 years old, 10 years with diabetes)
For me it was a slow, gradual transition process. I went from my parents sending me on my way with pre-filled NPH/Regualar syringes, to leaving a filled Minimed 508 reservoir on the counter for me, to my mom occasionally scrolling though the numbers on my meter, to complete independence. It was definitely a give and take process, with me taking on more than I should have at times, and trying to push my parents away and them trying to take my diabetes back into their control. But hey, ten years later I'm doing just fine, so I think something in there went right :)

Alicia Miller (20 years old, 8 years with diabetes)
Diabetes was a bit of a shock to my growing up. I wasn't diagnosed until I was 12, so I wasn't really able to progress into my teen years and puberty until I had gained back the weight that DKA had taken from me. It was rather quick for me, I was giving myself shots within two months of my diagnosis (I had wanted to go to a sleepover and wouldn't be allowed if I wasn't doing them myself) and was on a pump within two years. I'm still adjusting to having diabetes in my life. I have gone from middle school, to high school, and now to college and traveling with it. I am still questioned with what I am doing when it comes to checking my blood sugars, pumping and using my sensor. My parents have always helped as much as I allowed them to, which wasn't much since I have been incredibly independent when it comes to my diabetes. I went to school, stayed after and hung out with friends, clubs etc. like everyone else because my parents trusted me, and my control and dedication to controlling my disease. I may not always have "perfect" blood sugars but I have managed to lower my AIC, keep my eyes in good shape and travel abroad without major issues with my diabetes.

Bethany Kinsey (23 years old, 18 years with diabetes)
For me it was more a psychological struggle of wills. Having had diabetes since the age of 5, things typically go one of two ways: either you don't learn to make the disease your own until college or some other cataclysmic event in life or you want full control by age 12. I preferred the latter of the two. I am generally a very independent person with everything I take on, so why not diabetes as well? However, my mom and I fought for years about my control-sadly, she and I handle stress and arguments very differently, so neither one of us were able to realize what the other person was going through until retrospect allowed us to see 20/20. I recommend taking baby steps instead of diving head first into the deep end as a pre teen/early teen. Diabetes is a BIG deal. Take all of the help you can get - just don't let that help smother you.

Abby Bayer (22 years old, 12 years with diabetes)
My mom never had much to do with the actually diabetes part, about 3 days after I got home from the hospital I was doing my own injections, carb counting, etc.  I was almost 11 years old and was not about to have my mother running my life (and she wouldn't let me sleep at friends houses until I proved myself).  The biggest transition that I'm still struggling with is the paperwork side.  Insurance companies hate me, and aren't shy about telling me so. Sometimes I'll get 2 shipments of insulin when I only wanted one, and then they won't send me more when I ask for it. I have about 5 boxes the size of a small house in my basement filled with expired strips and lancets because the company was sending me far too many without me asking. It's a hassle, and until I get my own insurance and have the whole situation under control, I'm going to rely on my mother to fight with those people in who-knows-where about what they think I really need.

When did you start taking control of your own diabetes?  And this question isn't just about children becoming adults.  This could be the moment when you realized you didn't need to check with your endocrinologist every time you tweaked your insulin doses a little bit.  Taking ownership of diabetes isn't limited to kids who are growing up. 

When did you start to gain your diabetes independence?

November 29, 2010

Late: Special Sib of a D-Kid Day.

I'm late to the party on this one, but I thought this was a great awareness initiative taking place across the diabetes blogoshere (and starting on Alexis' and Sherry's blogs:):  Special Sib of a D-Kid Day.

Special Sib of a D-Kid Day!  (Was yesterday.  Sorry for being late!)

I realize I am no longer a diabetes kid, but I used to be one.  And my siblings are still my siblings, no matter how old I get. 

I don't have a clear recollection of life immediately after diagnosis, but I know back in 1986, food choices ruled the roosts of diabetes households.  Once the vials of insulin moved into our refrigerator's butter compartment, gone were the Twinkies and Ring Dings and Yodels (and other snack foods comprised of 1/2 a gram of actual nutrient and then a whole pile of crap).  Our eating patterns changed as a family, and Diet Pepsi and food scales replaced the snack cupboard of days gone by.  My mother hid the ice cream sandwiches in the hollowed out box of broccoli in the freezer.  She had packages of E.L. Fudge cookies hidden between the sweaters stacked in her closet.  She was a food-hoarding squirrel, with delicious treats in every obscure corner.

For me, this was a smart approach that removed a lot of temptation (and also presented some very furtive treasure hunts with tasty rewards), and one that helped to keep me safe and healthy.  But for my brother and sister, both with perfectly capable pancreases (pancrei?), the lifestyle change wasn't necessary.  Didn't they get to have snacks, still? 

What I failed to realize is that my diabetes didn't have to be my brother and sister's diabetes.  There was so much about their lives as the siblings of a child with diabetes that I couldn't even wrap my head around.  I didn't know what it was like to have your sister come home and play host to something no one could see, yet gained so much attention (for better or for worse).  I've talked to some siblings of kids with diabetes and heard about the guilt.  "I felt bad for wishing I was sick, too, because I was jealous of the attention."  Or the worry.  "Was I going to get diabetes, too?"  Or the anger.  "I am sick of her diabetes being the sole focus of our family."  Or just plain fear.  "Will diabetes hurt my sibling?"

Diabetes is a disease that affects the whole family.  It's not just the person who is receiving the injections or pump infusion sets or finger pricks that's carrying the full weight of diabetes.  I don't know if my brother and sister understood what "diabetes" meant when I was first diagnosed, and if any of us understood just how big the words "without a cure" really felt.   But I know that we learned about diabetes as a family, and dealt with it the same way. 

In honor of Special Sibs of D-Kids, I raise a contraband Ring Ding to you in solidarity.  You guys are a very compassionate, understanding, and patient group, and we, as your diabetic brothers and sisters, are very grateful to have you in our lives.

November 23, 2010

A Swiftly Failing Body.

I feel all ancient, like the old guy from UP!Despite diabetes, I've always felt like I was in "good health."  (Quotes are necessary, but even though I toted syringes around as a kid, I never felt like the "sick one."  Thus, making "good health" sort of a relative term.)  I have never broken a bone.  I don't often get colds or the flu.  While my friends were busy hacking up their lungs and hiding in their beds, nursing whatever plague ailed them, I was usually germ and virus free.

Until about three weeks ago.  

I don't know if BSparl weakened my immune system.  Or if the move to the new house/baby wrangling/excessive travel contributed to some major exhaustion.  Or diabetes just sort of reminding me "Hey, um ... still here."  (As though I could forget.)  Or if it's just some crazy perfect storm of chaos.  But whatever the cause, I'm currently inhabiting a swiftly failing body.

First off, my wrists are still a mess of tendinitis and carpal tunnel.   Physical therapy is definitely helping, but the process is very slow and since we're talking about my hands, it's not like I can go a day or two without using them.  (See also:  holding the baby, typing, carrying anything, putting on new infusion sets, testing blood sugar, picking up vital coffee cup)  Not to mention, the wrist braces at night aren't doing anything to go against that whole ROBOT feeling.

Secondly, I've been sick with some kind of freak show plague since the very beginning of November.  Started off with a sore throat, progressed to completely losing my voice, and then settled into this really lovely and incessant cough.  I haven't felt right or sounded right in three weeks.

And thirdly, while I was having a coughing fit last week, I felt this pop in my side and after being scrutinized by my best friend (the ER nurse), we both determined that I had bruised or cracked a rib from coughing.  Who does that?! So now every time I cough (which is thankfully becoming less frequent) or sneeze, the pain is pretty intense.

I deal with diabetes decently enough, but I have no patience for this extra crap.  Painful wrists?  Nagging cough?  Busted ribcage?  Hey pain, screw you and the horse you rode in on. ... and then I realize that the horse it rode in on is me, so I have to do something.

I finally have a doctor's appointment tomorrow afternoon to address the plague.  I have scheduled my physical therapy appointments.  And I'm not shy about taking pain reliever to help out with this rib thing.  I need to fix this swiftly failing body because I don't have the patience to deal with all the mess.  Besides, it's ANNOYING.  I don't like having to further dumb down my workouts because of these issues.  I don't like going in for a husband hug only to have to say "Be careful of my ribs!"  And nothing annoys me more than reaching down for my baby to score a snuggle, only to have the action punctuated with pain.    

So, to recap:  I am a ninety year old woman. 

I hope the mending comes quickly.  Chronic pain was not on my holiday "to do" list.

November 11, 2010

Parking Lot Lows.

Part of me would love to ride in one of these down a steep hill.  The other part of me wants to live."Brrrrr ... it's a little chilly outside today," I said to BSparl as I tucked her blanket snug around her wiggly little self in the car seat. She waved at me and showed me her sock.

"Yes, that's a nice sock, birdy.  Okay, let's get out of here and get you into the car so we can go home!"

The automatic doors parted and a brisk gust of wind came and skipped down my collar.  With the baby's car seat safely tucked into the belly of the carriage, I ventured out to find my car in the massive parking lot. 

"Ha ha, where did Mommy leave the car?"  I said out loud, walking up and down the parking lot aisles and pressing the alarm on my keys.  Nothing.  No flashing lights, no subtle little "beep" noise from my Honda.  Nothing but a sea of cars and I had no idea which one was mine.

"Am I getting old?"  I asked BSparl.

"Mmmmmm!"  she proclaimed, raising her teething toy into the air.

I walked for several minutes, combing the lot for my car.  And the wind kept whipping, only this time it felt good because it kept whisking the sweat off the nape of my neck.  I felt dizzy.  

"This car has to be here somewhere ..." I passed the the same minivan I had just seen moments ago, the one with the stickers on the back advertising the happy family that held the title.  "I just can't find it.  I can't find anything, baby.  I have no idea where this car is."

BSparl was starting to fall asleep, tucked happily into the blankets in her car seat.  And I could not find the car.  The parking lot was this sea of blue and black and red cars, none of which were mine.  My vision began to sharpen on the peripheral, leaving my main point of focus a little blurrier than usual.  The sounds of the parking lot were magnified in my head, leaving me confused and lost in my mental cotton ball.

I felt the buzzing from my purse, and then heard the unmistakable BEEEEEEEP! of the Dexcom.  Without checking to see what my blood sugar was, I reached into my purse while pushing the carriage and retrieved a jar of glucose tabs.  I chomped down on four of them at a time, the glucose dust taking off into the air.

The ground was starting to shift, like a blurry and constant tremor that only I felt.  I knew this low wasn't good - I needed to find my car and sit in a hurry.  But I had the baby with me.  So I had to make sure she was safe, too.

I saw a young kid who was corralling the shopping carts.  I motioned for him to come over, and he trotted over with a half smile.

"You okay?"  he asked.

"Not really.  I'm having a low blood sugar reaction and I cannot find my car.  I need to get my baby into the car and out of the cold, but I can't find my car.  It's not here.  I can't find it."  I hate when crying is the prominent symptom of a low.  I felt the tears coming.  And then I started to laugh, because I was picturing myself, shopping cart crammed with baby and bags, my coat sleeves covered in glucose dust, crying and roaming aimlessly around the parking lot in search of one little car.  

This poor kid must have thought I was on drugs.

Everything happened in fast forward.  This kid told me to stay where I was and he would find my car.  He took my keys and returned quickly, telling me I was just a few aisles over.  He put the baby's car seat in her car, loaded my bags into my trunk, and asked me if I was okay.  I housed a few more glucose tabs in the meantime.

"Do you need me to call someone for you?"  

"No, I'll be fine in just a few minutes.  I just couldn't find the stupid car and my blood sugar wasn't helping.  I'm so sorry.  Thank you so much for your help."

"Okay.  No problem.  If you need anything, I'll be rounding up carts.  I will be watching you, okay?"  He paused for a second, and then rubbed his hands over his attempt at a beard.  "Not like 'watching you' in a creepy way.  Just like making sure you two are okay."  

I sat in the car and waited for my blood sugar to come up while BSparl napped in the back seat.  After a few minutes, I checked to see 82 mg/dl flashing up from my meter.

"Holy biplane-building cats, Batman," I mumbled to myself.  "I must have been crazy low."

Safe in my car with my baby buckled in, I waited in the parking lot for my blood sugar to continue to rise, thankful for the kindness of strangers.

November 05, 2010

Eye Yi Yi.

"Just tell me what line you can read.  Smallest one that's clear, okay?"

"Got it."  I looked across the room to the eye chart.  "SNDRZ.  That's the smallest one that's clear."  

"Awesome.  20/16 vision.  Better than 20/20, my friend!"  The eye technician made a note in my chart, and then came over to apply the eye dilation drops to the inside of my lower lid.

"So now I go sit in the depressing waiting room and wait until I'm dilated?" I asked her, standing up from the examination chair.

"The depressing room?"

"Yeah, the one where there are mostly older people and almost everyone is using a cane and being escorted by a family member or something.  Not exactly uplifting."  I don't know why I had a chip on my shoulder.

"I never thought about that.  But yes, that room.  There's a big TV, though.  That's uplifting, right?"

I smiled at her.  "I'll take it."  

I wandered out into the eye dilation waiting room to let a few minutes pass as my pupils freaked out.  I tried to look at my phone but my vision was starting to sparkle-motion on me and I couldn't see a thing.  So I watched the history of Boston (and how Back Bay was literally the back bay of Boston) and waited.

Eventually, I was called into the office, and my ophthalmologist shined the bright light in my eyes while she asked me a few questions.

"So you had the baby!  How old is she now?"

"She's six and a half months.  I love her.  She's awesome."

"Good, good.  So have you had any issues with your vision?  Any changes that you've noticed?"

"Sort of.  I have this bit of cloudiness in my right eye.  Over on the far right side.  I'm not sure if it's exhaustion or eye strain from too much computer work, but it's the biggest change I've noticed."  

"Okay."  She took to my right eye and looked around for a while.  

"Anything?"  I asked.  I just wanted to know.

"No, nothing in that area.  You might just have some dry eye moments or eye strain, like you said."  

I let out this breath I didn't realize I was holding.  

"But there is some retinopathy.  And some macular edema.  Just a little bit - more in the right eye than in the left - so we're going to keep very close watch on this.  It could get better, it could get worse.  There's unfortunately no telling."

"So it's worse than before the pregnancy?"

"Yes.  You've gone from mild non-proliferative to moderate.  And that's okay.  We can handle that."

She kept talking, and I was listening to every word she was saying.  I heard the words "blood pressure" and "laser surgery in the future, but not now."  I heard her tell me that laser surgery wasn't necessary at this point, and that we wanted to schedule a four month follow up.  I heard her tell me that my eyes were still in good shape, considering 24 years with type 1 and my recent pregnancy.  And I heard her say that this wasn't something to completely panic about - just something to watch closely.

I heard all this.  I heard her reassuring me.  And I felt this weird combination of relief and sadness.  Because I'm in it, now.  Eye complications.  I won't be holding my breath during eye exams any more, because I'm not waiting for the change, for that first moment of "Oh, you have retinopathy."  I know it's there.  I have hope that it will repair itself, and that better diabetes control can contribute to faster healing.

We talked for a bit, and I fumbled with my phone to show her pictures of the baby.  I visited the retina photographer and had a few photos of my eyes taken, and then I ventured out to the parking garage to retrieve my car. 

I thought I might cry, but I didn't.  I thought about calling Chris or my mom to tell them the news, but I didn't do that either.  I sat in the car for a few minutes, listening to the sounds of Boston churning around me.  It felt good to just enjoy the silence.  It was going to be fine.  Things were progressing in my eyes and that was to be expected, after two decades with type 1 and the effects of a pregnancy.  It's not time to panic yet.  It's just time to be aware.

I can handle this. 

November 03, 2010

Therapy: The Physical Kind.

Photo credit:  www.spineandsportsmed.comBack in February 2009, I was diagnosed with tendinitis, in large part thanks to the mass amounts of computer work I was doing.  All that mousing took a toll on my wrist, leaving my tendons swollen and all -itis'ed.  I made some changes in efforts to alleviate the pain, but eventually I caved and received a cortisone injection.

And then some things happened.  Like a pregnancy.  And leaving my old job in pursuit of being a work-from-home pregnant lady and now a work-from-home mom. 

My hands?  Never got that break they needed.  And now the tendinitis has moved from the outside of my wrists to the interior.  It started just after BSparl was born, when I was breastfeeding.  The hand positions required to keep the baby latched on properly weakened the tendons in my hand.  And as BSparl got bigger and bigger, the stress of putting the baby in her carseat and into her crib made the tendons in my hands swell to epic proportions.  Even stopping breastfeeding didn't give me any relief in the hand department. 

I was permanently in pain.

After much prodding from Chris ("Baby, call the physical therapist."  "Call them today?"  "If you don't call them, I'm calling them for you."), I finally made an appointment with the physical therapist.  

"Hi.  I'm K.  I'm going to help ease this pain for you, okay?"  said the physical therapist as she met me in the waiting room.  (Already a 180 degree difference from my interview with the primary care physician.)

"Yes, please.  I've had this pain since before I had my daughter, but since her birth, it's shifted from the outside of my wrist to the inside.  I'm having trouble picking her up, putting her in the carseat, and getting her up from her crib.  Oh, and opening jars.  And turning doorknob."  I shrugged.  "Anything that requires my hands."

"Let's figure out what's going on."

I'd never been to a physical therapist before, and I resisted it because I felt like I should be able to get rid of this pain on my own.  It's not like I can't walk - it's just wrist pain. 

"I'm going to measure the mobility you have in your wrists now, okay?"  the PT asked, and I nodded.  We then went through a series of wrist mobility exercises which she measured with what looked like a plastic protractor.   And it was then that I realized how little comfortable movement I had in my hands.

"You are in a lot of pain throughout the day?  Okay, we need to take some of the stress away from your wrists.  What do you do for work?"

I laughed.  "I am a writer.  I work on the computer for several hours a day."

She laughed, too.  "That doesn't help.  How about when you aren't working?"

"I have a six and a half month old daughter.  And I work from home so I can take care of her, so I'm either typing or toting her around."

"I'm not surprised.  I've examined the inflammation in your hands and did you know there's actually a tendinitis called De Quervain's tenosynovitis that occurs in new moms a lot.  It's exacerbated by the motion of picking up the baby."

"Wow.  So is that what I'm dealing with?  This decoupage syndome?"  (I am clueless.)

"De Quervain's.  And yes.  You also have the very beginning of carpal tunnel, but we're catching it early.  I'm hopeful that eight weeks of physical therapy twice a week, in conjunction with hand exercises done every day at home, that you'll have marked relief.  I don't want to make any promises, but I know we can help you out."

For the rest of the appointment, we spent time reviewing the exercises I was to complete twice a day at home.  (These exercises make it look like I'm painstakingly waving at someone, in slow motion.  Chris is confused by this.  "Are you waving at me?"  "No, I'm gliding my tendons.  What, that's not cool?")  And the PT also used an ultrasound machine to pulse heat and vibrations into my tendons to help ease the swelling.  (It was kind of neat to have an ultrasound that didn't show a baby bouncing around in there.  New experience for me.)  And I've also been prescribed two wrist braces to wear while I sleep to help keep my hands in a "neutral" position.  (And I've tried wearing the braces to bed for the last three nights, but somehow, in the middle of the night, I end up taking them off.  While I'm sleeping.  Very odd.)  I'm trying out everything I can in efforts to rid my wrists of this pain. 

I'm hoping to see some relief in the next eight weeks, and I'm cautiously optimistic that I'll feel close to 90% once the physical therapy sessions are over. 

(And, for the record, this is the way a doctor's office should be run.  Attentive staff, clean environment, medical professionals who make eye contact with their patients, and a discussion about payment after they learned my name, not before.  These small things make a big difference in patient experience, and I'd give this PT office a referral any time.)

November 01, 2010

First Walk.

We walk to show that we're in this together.  That we are an extended family of people with diabetes - young and old alike, all living as well as we can with this disease.   That we rally together and celebrate our lives, even when they're ornamented with insulin pumps and glucose meters.  We bring our moms and dads.  Our husbands and wives.  Our friends.  Our children.   It's an event crammed with people who love and who are loved, and we walk because we're part of this diabetes family.

Thank you so much to everyone who donated to this year's JDRF Walk to Cure Diabetes.  Your support means so much to me and my family!!

And the walk was a great way to kick off Diabetes Month, where (hopefully) the attention of the nation will be turned to diabetes in all its forms.  I know there are many projects and awareness initiatives taking place across the diabetes online community, and I'll do my best to help spread the word here.

In the meantime, BSparl enjoyed her first Halloween on the outside, and she charmed her mommy and her daddy by beaming out some smiles in her pink kitty costume:

Kid cracks me up.

I love being part of her life and seeing her smile every day.  I'm working hard to be around and bothering her for a long, long time.

... we walk because we want people to know there isn't a cure yet.  But there should be.

October 21, 2010

Look Forward to Today.

We stand together, even when things get really tough.Last night, I woke up at three in the morning and listened to the sounds of the crickets outside my bedroom window.  Not a human sound could be heard.  When I closed my eyes, I could hear my own heartbeat.  And even though I don't spend the majority of my time worrying about diabetes complications, my mind went immediately to the news I heard yesterday, about another young child with diabetes taken while she slept.   (The both tragically named and tragically accurate "dead-in-bed" syndrome was to blame.)  She was 13 years old, her parents were active and engaged in her care, and there wasn't anything that anyone "did wrong."

The Children With Diabetes website describes "dead-in-bed" happening "after having [the patient] having been observed in apparently good health the day before.  No cause of death can be established."  The article also goes on to say, "In a recent review, clinical reports strongly suggest that nighttime hypoglycemia is a likely prerequisite of the event, but that the death is sudden and probably caused by cardiac arrhythmia. It is postulated that early signs of nerve damage (autonomic neuropathy) can result in a disturbance of the autonomic nervous system." 

I don't know what to think.  I can't comfort myself with the fact that I have access to a blood glucose meter and I'm testing my blood sugar regularly.  Or that I've been to the doctor more in this year alone than I have been in all other years combined.  I don't feel confident that I have 24 years of what some have called "borrowed time" under my belt.  Even the CGM, with its protective bells and whistles and warnings of both highs and lows, doesn't offer me solace right now.

I felt scared.  I'll admit it.  I felt so sad for her family and for all the families who have had to weather this kind of storm.  Because there isn't any rhyme or reason to this disease.  Even when signs all point to "fine," there's a chance your body can just give out.  And that's something that keeps you up at night.  It's something that kept me up last night.  My brain was spinning and grief for a family I didn't even know was prickling.

This is scary, without a doubt.  This is the kind of stuff that I, as a blogger, want to pretend doesn't happen.  I want people to find my site, and the sites of my fellow diabetes bloggers, and feel comforted because we're all alive.  Our health levels vary, but we're all alive.  And the idea of the parent of a newly diagnosed child stumbling upon this story breaks my heart, because this is not the rule of diabetes.  

Dead-in-bed is the exception.

I wondered if premature deaths in people with diabetes are rising, or if we're just hearing about them more often.  I used to be the only diabetic I knew, but then the Internet introduced me to hundreds of others living with or caring for the same disease.  And now I have an extended family of people with compromised immune systems.  So I wonder if these tragic deaths have been occurring for as long as I've been diabetic, only I haven't heard about them so readily because information didn't spread at the rate it does now.  And as awful as the feelings must be for those who have lost a loved one, I wonder if it would be worse to not have the larger diabetes community to lean on for support?  Would I feel better not ever hearing about these difficult times or would I rather deal with diabetes alone?  I think everyone's experiences vary, and emotions run high in times like these.

I thought about my daughter, asleep in her crib, and the instinct to protect her from everything rose up in my throat.  But I can only do so much.  I can only protect her, and myself, from so many things.  The rest becomes part of life and part of circumstance.  I can't make myself lose my mind with paranoia, even though I love her endlessly.  I need to let her live her life.  Just as my mom lets me live mine, despite her fears as to what role diabetes may play.

We do our best, as parents.  As children.  As diabetics and the caregivers of diabetics.  As people.  Tragedy will come and go in all of our lives, but the best is all we can do.  Life goes on for those of left behind.  And we can't exist in fear.  Even though it can be so scary at times.  We owe it to ourselves to be as educated about diabetes as we can, as empowered as patients as we're able to be, and as healthy as we can manage.  We lean on one another for support in these difficult times, and we look forward to today for inspiration. 

Hug your loves ones today.  As many as you can (even your cats).  Because when it all boils down, we're all we've got.

October 01, 2010

Joining the Gym.

We moved at the very end of August, and when we left our apartment, we also left behind our gym.  Lovely, right-there-in-the-building gym that was easy to get to because it didn't require getting into the car and trekking across town.  I worked out for the majority of my pregnancy, thanks to this gym, and only stopped when pre-eclampsia started to make my body its home.

Yesterday morning, I weighed myself and saw that I'm back to my pre-pregnancy weight, numbers-wise.

"Whaaaa?"  I said, looking into the mirror and assessing the various areas of squish.  "This is not how I looked before that little biscuit of a BSparl arrived."

Weight, for me, has never been a numbers game.  I've never cared in the least about what winks back at me from the scale, but more how my clothes actually fit.  Over the years, my weight has fluctuated due to muscle mass, stress, season (summer = ice cream), and work schedules, but overall, I've remained the same general size.  

But when BSparl came into town?  (And by town I mean "uterus.")  Chaos.  My body has taken on shapes I have never seen before.  Contents definitely shifted during landing, and I'm looking at a whole new me when I see myself in the mirror.  And honestly, I'm not the biggest fan of what I see. 

Some things, I'm fine with.  Like the scar from the c-section.  It's a sizable sucker, but it's proof positive that my baby came from my body, and I'm reminded of that every time I see her.  Some women call it a badge of honor.  I'll take that.  The stretch marks?  I'm less snuggly with those, but every week they fade a little more and every week I notice them a little less. (And Palmer's cocoa butter helps.)

Other changes in my body can be filed under "changeable," and now that BSparl is five months old, we've moved, and my travel schedule is about to lighten up over the holidays, I'm fixin' (nod to NBF) to get myself back into shape. 

So last night, I joined a gym.  And I worked out for the first time since we moved into our house.  Granted, it wasn't the most aggressive of workouts, but I was there.  I spent 45 minutes on the cardio circuit, and even though my weight didn't shift even a smidge, I felt worlds better when I left.  Like I wasn't just sitting at home, wishing I was making a change.  There I was - making it.

At the end of December, I'll be in Marco Island with my family and my extended CWD family (including my daughter's favorite spit up target, Mr. Scott Johnson), and I want to feel good about how I look when I'm there.  I have three months to reign things in, and I know that - for me - with exercise comes better diabetes control. 

Hear that, Larry?  You thought you shook me off for the last few months?  Pfffft.  I'm comin' for you.

Shhhh!  Larry is always watching.

September 30, 2010

ePatient 2010: Are You One?

I spent the last few days at the ePatient 2010 conference in Philadelphia, and one of the terms (surprise, surprise) that kept coming up was "epatient."  I've written about my take on the term "epatient" before, and was surprised to hear that there was a negative feel to the term, like it was overused.  And overplayed.  (Like Chumbawumba.)  

I turned to Facebook to see how my friends felt about the term, and the feedback was instant and mostly positive.  Facebook buddy and fellow ePatient 2010 attendee, Susannah Fox, connected with me after seeing the discussion and sent me a link to a discussion on her blog about the word "epatient" and how that movement is going through some growing pains. 

Far be it for me to be ahead of the curve (I just started tight-rolling my jeans), but I'm still comfortable with the term "ePatient."  I find it to be empowering - another "e" word - and having it as part of my identity makes me feel like I'm part of a very strong, very forward-thinking community.  Having lived with diabetes for ... forever, it seems, I am so appreciative of the changes taking place in patient care.  I like the broad stroke of support that the Internet provides for patients, and the power of connecting outside of the perimeters of your zipcode makes an enormous change in how I view my health.  As I said at the conference, "People with diabetes take drugs, test their blood sugar, watch their food intake, but emotional support is just as crucial as the insulin we take.  For me, it's part of my health."  Empowered, electronic, encouraged, engaged ... ePatient.

My friends in the Facebook circles had varying perspectives, but most of them seemed to feel empowered to be using online resources to manage their health - or the health of their loved ones.  Here are a few responses:

With all of these varying discussions about the term "ePatient," how do you feel that you fit into the mix?  Do you think the term is overused and now weak as a result?  Are you empowered by the term "ePatient?"  Or do you have an entirely different opinion to share?  Are YOU an ePatient?

September 29, 2010

Philadelphia Diabetes Meet Up.

Conferences are a good time and a great networking opportunity, but there's NOTHING like hanging out with fellow PWDs (and PWD caregivers). 

Hanging out with fellow diabetics (and their caregivers) in Philly!

Thanks for coming out last night, everyone!  It was awesome!!!

September 17, 2010

Diabetes Control = Hot Mess.

I want to stop picturing these every time I test my blood sugar.Exhausted doesn't even begin to explain how I'm feeling at the moment.  Over the last few days, we've moved into a new house, worked and lived through some construction efforts in our home, traveled to the Toronto International Film Festival for the Buried Canadian premiere (by propeller plane, but more on that panic attack later), and then hoofed it to NYC for a screening (more on that later, too).  Our house is chaos, our schedules are all over the place, and my health management is under duress.

Even though all of this stuff is exciting and the journey to get here has been incredible, it's a lot to manage all at once.  I love to travel, but I hate the actual process of "getting somewhere."  I don't travel light, I have some physical limitations that make travel difficult (read:  tendinitis so bad that I can't lift a bag without wussing out), and I'm still not a fan of flying.  That, combined with the lack of sleep and a wildly varying schedule (including nights that push the 3 am envelope - hey, college throwback!), is a recipe for disaster with all the diabetes stuff.

Blood sugars have had pockets of success, like last night at the Tribeca screening, where I held rock solid between 100 - 150 mg/dl all evening long.  But there have been some disastrous runs, like the night of the Toronto screening, where I was over 280 mg/dl for four hours, despite boluses.  (I eventually took an injection and pulled the site, but the site seemed fine.  I hate when the cause of highs can't be nailed down.)  I'm testing a lot, but my body isn't responding to things normally.  Foods that I'm usually able to tolerate, numbers-wise, are now throwing me into the stratosphere  or tossing me into the trenches.  I'm living on a steady diet of coffee and lip gloss.  Infusion sets are staying in for four days at a time (instead of the three days I had committed to while pregnant - absorption is so much better when you follow the damn rules) and I think the last time I changed my lancet was when BSparl was born.  

I'm a hot mess.  And not in that cool way.  More in that "Geez, Kerri, you think you're cured or something, the way you've been acting lately" way.  (Note:  Haven't been cured.  Just a very scattered diabetic these days.)

I'm not sure if these hiccups seem more dramatic because they're in contrast to the very tight, very obsessive control I had while pregnant, but in any event, I'm not pleased with my lack of commitment to sparkle motion.  (see also:  hot mess)  But I have to get things back under control.  Events for Chris seem to be coming up every week, and I want to be physically ready to attend with him.  (As in, I don't want to be 39 mg/dl.  Or 399 mg/dl.)  And this is all without mentioning my smiley little daughter, who would do well to have a mom who isn't bouncing all over the blood sugar map.  

The next six weeks will be challenging for me, as both a diabetic and a new mom, because it's sort of non-stop until the holidays.  And even though the events are coming and going, the diabetes isn't.  I can't spend the next six weeks winging it.  I need to find a way to do these things without sacrificing all of my diabetes control.

I can do this.  If I was able to get my terrified arse on a propeller plane, I can wrangle in a blood sugar or two. 

September 10, 2010

24 Years.

Tomorrow is my 24th anniversary with type 1 diabetes. 

There's a lot I can say about the diabetes community, and how far things have come in the last twenty four years.  How what was once a disease that left me feeling alone and obscure now comes with a welcome bag and a community of people who can lift your chin when it sinks to your chest.  I thought about how many people I knew with diabetes on the day of my diagnosis (one) and how many I know today (far more than I can count).  

I am grateful for all of these things.  

Some years I want to celebrate another year marked with diabetes.  Sometimes I feel defiant, like I just poked diabetes in the chest and told it what's what.  Some years I want to keep to myself, feeling a little jumbled at the thought of so many years with this disease.  And some years I'm a combination of all sorts of feelings, just wanting my husband to give me a hug and have a bite of Fudgy the Whale with me.

Last night, I felt different.  This year's anniversary feels different.  Maybe because there's been so much change in the last year.  Maybe because this day could come and go unnoticed, because an anniversary with diabetes doesn't change the diagnosis.  Doesn't make my health any better or worse.  It's just another box I can check, another year that I can say, "Yes.  I've been at this a long time."  Maybe it's because I will wake up tomorrow and it will still be here, despite these promised cures.  Maybe because I've moved into a brand new place but still have boxes marked "diabetes supplies."  As I unpacked, I reached the bottom of a bin of clothes and found a used test strip and I couldn't even tell what kind of meter it went it, it was so old, and that made me so sad for some reason.   

I tried on a few dresses in preparation for our trip to the Toronto Film Festival and felt upset that my post-pregnancy body still felt so unfamiliar, and that the pump seemed the size of a coffeemaker as I tried to hide it in my fancy garb.  Frustration mounted, and I felt like I was swallowing a scream.  I needed a hug. 

I went into my daughter's room, where she was asleep in her crib.  Her arms above her head, in her 'sleep victory' position.  Her breathing was even and steady, and she wrinkled her nose and rubbed her fist against her cheek as the floors yawned in response to my footsteps.  

Diabetes doesn't define me, but my daughter does. 

I scooped her up without thinking and held her close.  She cuddled close to me, resting her head against my neck and I stood there and felt ridiculous because I just wanted to cry, I was so proud of her.  And so in love with her.  And I realized that what had changed was everything.

Twenty four years with type 1 diabetes is a good chunk of time, but I'm not done yet.  It will be with me when we celebrate Chris's film next week, when we walk with our friends and family for a cure at the end of October, and when we have breakfast together tomorrow morning.

Diabetes is always there.  But it's not me.  It will never, ever be the core of me. Not if I have it for a 100 years.

24 years with diabetes

September 09, 2010

Running with Diabetes.

I don't run.  Not well, anyway.  Running isn't my activity of choice because my body doesn't do well at high speeds.  But when I go walking or any other exercise that's outside and brings me far away from my car, I grapple with that whole "what the hell do I do with my diabetes supplies" issue.

For the most part, I usually carry a small bag.  Sometimes I bust out the meter from it's protective black case and throw it into a SpiBelt, adding in a tube of glucose tabs and my keys and cell phone and ... suddenly, I'm a pack mule, careening up the mountainside. 

I am not a "travel light" diabetic.  I'm a messy, throw-it-all-in-a-bag-and-hope-you-don't-lose-the-bag diabetic.  But some PWDs have figured out a terrific way to keep tabs on their diabetes while exercising.  Like my friend Melissa (a fellow Clara Barton Camp alum), who MacGyver'd her meter into her running shoes.  Here's a shot of her kicks, that she's graciously allowed me to share with you guys:

Melissa "Rebel" Kauffman and her diabetes running shoes.
Photo credit to Melissa K.  She also has a series of glucose stashes on her run route, in case of a low.  Clever girl!  (But no, I have no idea where she keeps the actual test strips.  You'll have to ask her.)

I think this is brilliant!  How do you keep your supplies at the ready when you're on the run - literally?  Are you like me, with an awkward bag of everything, or are you as streamlined as the pictured PWD?

August 26, 2010

My Hat Was Kicked.

I woke up yesterday morning at a blood sugar of 158 mg/dl.  A little on the spikey side, but no worries - after I breastfeed BSparl, I usually drop about 40 points, so I figured I'd use her feeding as my "bolus."  By 8:45 am, I was down to 129 mg/dl.  And then things hit a downward slide that I couldn't control.  

Over the course of the next five hours, I tested several times and saw the numbers tumbling all over the place.  At one point, I had to leave the baby fussing in her crib because I was attending to a 38 mg/dl.  The next blood sugar I saw was 29 mg/dl.  And then 61 mg/dl.  And then 55 mg/dl.  Hours were going by, and carbs were being consumed, but they weren't making a dent on the determined low blood sugar. 

BEEEEEEEEEEEEEP!

Dexcom wailing to let me know I was, once again, under 50 mg/dl.

Shunk.

Another blood sugar test confirmed yet another low.

Hours kept ticking by but I wasn't coming up. It took until 4 pm to see a blood sugar over 100 mg/dl, and then all hell broke loose on the other side.  After over eight hours wrestling with a low blood sugar, my body decided to flip upside down and let all the hourglass sands go to the other side, sending my numbers up into the 400's.  Why on Earth was I low for so long?  And why did I rebound so hard after treating the multiple lows modestly?  

(I keep picturing the carbs, hiding out behind my lungs, waiting to actually enter my blood stream and then all screaming in at once.  "Ahhhhhhhhhhhh!!!" waging war, holding pixie sticks over their heads as they come charging in, full force, for the freaking rebound.)

Which, of course, happened in full force with a gorgeous 405 mg/dl around 9:30 pm.  Yes, I lost track of time between 6 - 9 pm, when apparently the Dexcom graph shows a sharp spike upward.  But still - low all day?  ALL day?  

You know it's been a rough diabetes day when your total dose from 7 am - 6 pm is only 8u, yet your 6 pm - midnight dose is 29u. Diabetes kicked my hat.  Kicked it right-proper.

(We're definitely installing this emergency box.  If nothing else, at least lows will be delicious.)

Yes, this is a reused image.  No, I don't have any guilt.

August 24, 2010

What is the Best Motivator?

I've heard that fear is a pretty good motivator.  Over my two plus decades with diabetes, I've heard the "fear tactic" from many medical professionals.  Actual statements:  "Make sure you test or your eyes will become diseased and you'll go blind." And "If you don't take care of yourself, you'll lose a leg when you're older."  And of course, "If you eat that, you'll end up with complications and then you'll have to live with that."  (see also:  ugh)

Fear has never been a good motivator for me.  When I'm scared, I have a tendency to hole up and hide.  When I think about the future of my diabetes, I know there is a good chance I will have some kind of complication. I have sat in the endocrinologist's office far too many times to tune out the threat of "what might happen."  I know what could be brewing.  Like it or not, I understand the effects of unmanaged diabetes.  I work hard to manage diabetes.  But I'm not so hot with managing the fear.

And if, for even a second, I forgot what diabetes complications may be waiting in the wings, I have many things to remind me.  Like the pamphlets at doctor's offices.  And the commercials on TV.  And videos about how diabetes can cost you a leg.  

That video makes me so frustrated because if I had seen it before the diabetes online community had bloomed, I would have been so distressed.  The images in that video would have haunted me, but not in a way that would impact my diabetes favorably.  That kind of video makes me want to stick my head in the sand and pretend it's not happening, instead of taking charge and control of my own disease and realizing I have the ability to impact my future health TODAY.

Give me hope any day.

I think it's more important to remember that there is a good chance I WON'T have some kind of diabetes-related complication. That some combination of good care and good support and good luck (yes, I think some of it is just plain luck) will usher me into my later years without a scary complication. Fear is not the best motivator for me - hope is far more effective.  I hope to be healthy for a long time.  And it's hope that keeps me testing my blood sugar every morning, working with my doctor to best-manage diabetes, and monitoring this monster closely. I don't want images of amputation flashing in front of my eyes every time I go to grab my meter.  I'd rather think about blowing out the candles on my 75th birthday party, a strong and healthy old bird.

Fear?  No thanks.  Give me hope any day.

July 26, 2010

Your Mom is Low.

Terrible habit, sarcasm.  Especially the "your mom" retort.  Like when my college roommates are out at the bar and someone asks for another beer.  Instantly, "Your mom wants another beer."  Immature retort?  Indeed.  But almost reflexive at this point?  Unfortunately, indeed again. 

(This intro has a point - bear with me.)

This morning, I woke up with my first bad low in a while.  For the last month or so, I haven't seen lows worse than 55 mg/dl, and my sensitivity to the symptoms seems to have increased a bit.  But while the lows of the last few weeks have felt mild, this morning's 49 mg/dl raked me over a little bit.

I woke up feeling groggy and warm, despite the air conditioning and the fact that I'd slept about seven hours straight.  (Yay for Sleeping-Through-the-Night-in-her-New-Crib BSparl!) The corners of my mouth were numb and I felt like my whole brain was encased in cotton balls.  I reached for the black meter case and brought it close to me in bed.  Fully intended to test.  But instead fell back asleep for a few minutes, with my meter snuggled against me.

Once I did wake back up, it had been another eight minutes.  And my symptoms were progressing, giving rise to shaking hands in addition to the cotton ball veil.  But it's strange, where my brain goes when I'm low.  I had a juice box right on the bedside table.  I knew I was low and didn't need to test to confirm, but I was on some kind of OCD autopilot.  I had to test.  Instead of grabbing the juice from beside me, I instead grabbed my meter from the bed, walked out into the kitchen, and set up the machine on the counter top. 

Sorry for the old photo.  (Your mom is an ... old photo?)

BEEP!

Shunk.

49 mg/dl.

"Okay,"  I said out loud, and took some glucose tabs from the cupboard.  (Chompy, chompy ... always a weird effort to get those things chewed up when I'm that low.) 

And then I heard BSparl stirring in the next room.   Not crying, but just stretching her little BSparly legs and easing into the morning routine.  I went in to stand at the side of her crib while I waited for my blood sugar to rise. 

"Hey sweetie girl.  Good morning!"

She kicked her legs and grinned at me.

"Hi!  Hang on just a few minutes, okay?  I'm having a low blood sugar and I need to wait before I get you up.  Just another minute or so.  I'm low.  Your mom is low."

And I thought of my roommates tossing the "your mom" retorts around with reckless abandon. I stood there giggling like a fool for at least a minute, the smile of irony on my face causing my daughter to bust out with an even bigger smile. 

"That's right, baby girl.  Your mom is low."  

Finally - FINALLY - the "your mom" actually makes sense.  (And with that, I've come full circle.)

July 21, 2010

Trends.

So here's a trend:  Today, I woke up to the sound of my baby cooing from her bassinet.  My hands reached over to the Dexcom receiver and I clicked on the button to light up the screen.  I saw a "74" and an arrow trending oh-so-slightly down.  So while Chris changed the baby, I went out to the kitchen to grab a swig of juice before settling in to breastfeed BSparl.  I fed her and then went into the living room to play with her.

Notice any problems here?  Anything ... oh, I don't know ... missing?  Like maybe a blood sugar check when I woke up?  Or at least one after I fed her?

Nope.  Nothing.  No test.  I went all the way from waking up to freaking NOON before busting out my meter.  This is a terrible trend.  And it's happened twice in the last four days.  I'm relying way too much on my Dexcom for guidance, instead of double-checking every hour or two with my meter.  I mean, missing a fasting blood sugar?  I've never, ever done that before.  Even in college, when I was at my diabetes worst, I still tested first thing every morning.

This is not a trend I want sticking.

I miss these little blue guys.  :)Here's another trend:  For the most part, I am BSparl's daytime friend.  During the day, Chris leaves our home office for a distraction and baby-free zone where he can focus on his writing.  So for several hours a day, BSparl is left to her mommy's devices.  (Including, but not limited to, visiting friends for lunch dates, running household errand-type things, and my own attempts to get work done.)   When I'm hanging with the baby, getting to the gym is impossible, and with the weather so hot and humid lately, I don't feel comfortable taking her for a walk in the stroller.  By the time Chris gets home, and we talk for a while, and we have dinner, etc. etc., it's suddenly so late that it's almost time for Colbert to come on.  (NATION!)  And I'm too exhausted to hit the gym.

This is not a trend I want sticking, either.  

A lot of the baby weight has come off (thank you, breastfeeding), but I am in desperate need of some muscle toning.  I need to get some workouts in as part of my schedule in a hurry, because I'm growing tired of feeling flumpy.  Before I got pregnant, I felt good about my body.  Now?  I need a little more effort to get back to fighting shape, or at least faux-fighting shape.  (Like the kind of fighting that includes throwing styrafoam peanuts.  Or something similar.)

The trends of missing blood sugar checks and workouts must end TODAY.  These habits are too damn crappy to let them continue.  I can't let these two trends wreck my goal of good health.  Small changes can make the biggest difference, so as of this moment, I'm realigned myself to test every morning and to get some exercise in at least four days a week.  (I was doing five days a week for years, so four days isn't a bad starting point.)  And it doesn't have to be a gym workout - I'll take anything from a long walk with the stroller and BSparl to an ellipmachine workout to a bike ride. 

Why am I rambling on about this?  Accountability, my friends.  By telling you, I'm setting myself up to be accountable for my actions (or lack of action).  It worked in helping me get my diabetes reigned in for pregnancy, and I hope accountability can help me get my act together to be a healthier mom.

July 13, 2010

Clara Barton Camp.

I love Clara Barton Camp.  I love the way it smells, the way it looks, and the way it makes you feel as soon as you step foot on the grounds.  Driving in to North Oxford, MA last weekend to speak to the staff, I was hit with a wave of excitement at the idea of visiting my old stomping grounds.

And even though the cabins are new (no more rotten old Pixie Place) and they have bathrooms and showers IN THEM (no more waking up a buddy in the middle of the night to take a trek to the lab - which was across the camp - because you had to pee), and even though I was a camper there over fifteen years ago, NOTHING has really changed.  Almost all of the campers and staff have type 1 diabetes, making the few people who didn't have to test their blood sugar first thing in the morning the odd ones out (for once).

When I arrived, the dining hall was literally throbbing with the sounds of campers and staff singing camp songs at the top of their lungs.  "Sounds exactly the same as when I was camper here," I said to Abby, who was giving me a quick tour of the new cabins at CBC.  Admittedly, I felt a little old when she was walking me through the cabins, because I kept remarking at the fact that the structures had both running water and electricity.  

"I feel like one of those old people who constantly tells you about how, when they went to school, they had to walk uphill BOTH WAYS, clutching potatoes in their hands to keep them warm.  But seriously, cabins having bathrooms is amazing.  My mind is blown."

Once we made it up to the dining hall, I had the absolute honor of meeting with the staff and LITs (Leaders in Training) at CBC that had diabetes.  I was invited up to talk about growing up with diabetes what it's like to transition from being a child with diabetes to an "official" grown up with diabetes, and these girls were the best audience I have ever had.  And the audience with the highest percentage of diabetes!  According to the camp director, there are only about 14 people on the grounds who aren't living with diabetes - that's a LOT of insulin being piped in on a daily basis! 

The awesome staff members at Clara Barton Camp.

We all hung out in the dining hall and just chatted.  It felt like a big slumber party, only I wasn't sporting pajamas (and I planned to sleep at home).  They had a lot of questions about managing things like college, dating, and of course, the whole baby thing.  I tried to be as honest as I could be, toeing the line between "one of them" and "an adult."  Like when they asked me about drinking.  "I know I'm supposed to be responsible and tell you that drinking with diabetes can be really dangerous, and can lead to some very serious diabetes-related consequences, which is all true.  But I can't lie and say that I didn't drink in college.  So here's what my experiences were like ..."

It was an incredible night.  These girls are a group for the entire diabetes community to be proud of.  Their energy, their endless smiles, their excitement for everything.  They took pictures (some goofy) and burst into song at the mere mention of the word "song."  (Video of a song about ketones coming at you ... now:)

Clara Barton Camp has this way of making you feel like you're being hugged the entire time you're there.  It sounds cheesy, but it's true.  CBC is like a second home to so many girls with diabetes, and for some, it's the first place they've ever felt like everything was going to be okay.  I asked some of the staff members to tell me what camp means to them.  Their responses were varied, but all hitting on the same general theme:

"Camp helps make me who I am."
"It feels good to be able to text someone in the 'off season' [when camp isn't in session] and vent about a high blood sugar."
"When I'm here, I sometimes feel homesick, but when I'm home, I definitely feel campsick."
"Here, diabetes is cool.  The people who don't have it are 'wannabetics.'"
"When I am here, I feel like a whole person."
"I thought it would be about teaching the kids, but I'm learning so much myself here."
"This place is literally my second home."
"These are friends that I'll have for the rest of my life."
"Camp is my security."
"I'm glad I'm staff this year because I get to give back to something that gives so much to me."

But my favorite was when one staff member raised her hand and said, "It's the happy bubble.  This whole place makes me feel like I'm in a happy bubble."

Clara Barton Camp is definitely one, big happy bubble.  And it was such an honor to revisit a place that played a huge role in shaping how I view my diabetes today.  Huge thanks to Abby, who coordinated the event, and to each and every member of the CBC staff for their warm and inspiring reception - and for the kick-ass t-shirt.  (And props to Savannah for rocking those mismatched galoshes!)

July 06, 2010

Finding Your Voice Online.

Last Wednesday morning, Amy from DiabetesMine and I co-lead a focus group at the Friends for Life conference called "Finding Your Voice Online."  The group consisted of a bunch of d-moms, d-dads, and some kids with diabetes who sat in on the session, not to mention some terrific diabetes bloggers (Heidi, Scott, Chris, and Bernard).  And then there was Amy.  And me.  (And my enormous iced coffee - so necessary.  Apologies to everyone who realized I was way over-caffeinated by the end of the presentation.)

Amy opened with an introduction to her blog and her work in the diabetes community, and I finished with my story of how I ended up immersed in the blogosphere.  (Slides below.)  We shared how we 'got started' with blogging, and what kind of opportunities have come as a result of our efforts.


I've spoken at different conferences before, but the Children With Diabetes conference is different.  Its core audience isn't someone with a Pharma agenda or something to sell - the people who go to the Friends for Life conference are people with diabetes, and the people that love them.  They're the people who are affected every day by diabetes, and if this conference had existed when I was growing up, I would have had a completely different perspective on my diabetes.  The FFL audience cares not only about new research developments, but about the real life of a person with diabetes.  Their kids are more than their disease, and I hope they found some comfort in seeing two adults who were more than their diabetes, too.

As I clicked through my personal slides, I talked about my life and my marriage and my stupid cat.  And then I shared with them what I was most proud of:  my daughter.  "When I was first diagnosed, back in 1986, my doctors told us that my having children would be near impossible.  But I am so proud to say that I proved that you can have a healthy baby, even if you have diabetes."  And her little face, grinning out from the slidedeck, proved to me once again why people with diabetes need more exposure to others living with diabetes.  It feels so empowering to know that you can do anything - have a child, drive a race car, fall in love, climb up Everest! - even if you are living with diabetes.

Bloggers at Friends for Life
Bernard, Amy, Kerri, and Scotty J!!

The parents in the audience had a lot of questions, and many concerns were about online privacy.  We talked about the decision to share or not share our child's name or photo with the online community.  "For me, I decided that a few photos here and there were fine, but I wasn't comfortable subjecting my kid's name to Google just yet.  I want her to make that decision for herself.  But I'm like any other parent, and it's hard not to share my little kid with everyone!"  

One parent talked about her decision to make a JDRF walk fundraiser video, and how she had mixed feelings about the level of exposure.  

"I think that we're all safe in this diabetes community, but I need to remember that there aren't just people with diabetes who are reading my blog."  I said.  "Sure, the patient and medical community might be reading our posts and watching our videos, but there are also some completely random people who might be logging on.  And while we're safe within the 'borders' of the diabetes blogosphere, the Internet as a whole isn't quite as safe."  

Some parents had questions about starting their own blogs and getting involved with the diabetes blogosphere.  Others had questions about how to raise the awareness of their existing online properties.  Amy and I walked them through different resources for developing their online voice.  

I have always been a huge supporter of the Children With Diabetes efforts, in particular the Friends for Life conference, and having the chance to speak at a focus group was more than an honor  - it was like coming home.  Thanks to Jeff and Laura for hosting us, and thanks to all of the discussion participants! 

July 02, 2010

Reaching the Summit.

On Monday afternoon, BSparl, Chris, and I boarded a plane bound for Orlando, Florida.  (It was our first trip with the baby - more on that later, because I'm still processing all the stuff required to travel with an infant.)  My trip was dual-purposed:  to attend the Roche Social Media Summit and then co-lead a focus group on Wednesday morning at Friends for Life. 

Like everyone else, I have a disclosure with this:  Roche paid for my plane tickets to and from Florida, and they also covered my hotel room for Monday and Tuesday night.  But they didn't hold me over a shark tank to gain input from me, and I am also still using my brain on my own, so basically they can only claim travel, food during the conference, and lodging.  They also didn't ask us to blog about the event (even though they knew we would).

But like I said last year, Roche is smart because they know by bringing together a pile of bloggers, Roche will be discussed on a pile of blogs.  And also in step with last year, Roche treated us respectfully and worked hard to make sure we were happy, as a group.  But I can't lie:  I was excited to attend this event because it would put me in "real life" touch with my extended diabetes family.  The invitation coming from Roche makes it a "Roche" event, and I can't hide my bias when it comes to being grateful to them for having the opportunity to socialize with my social media friends.  So that's the full disclosure. 

The event took place as a bookend to the CWD "Friends for Life" conference, which seemed to dictate the timing and location.  I think there was a total of thirty-seven bloggers, representing the type 1 community heavily, but with voices from the type 2 and caregiver crew as well, and we were hanging out in a conference ballroom at the Orlando Marriott all day on Tuesday.  

The Roche representatives were very cool to us, and didn't seem to have an agenda of expectations - just an agenda of events.  They had us engaged in discussions about meter accuracy and they also invited in representatives from the American Diabetes Association and the American Association of Diabetes Educators to talk with us.  I felt a little quiet during these discussions (thanks to the utter lack of sleep the night before, with BSparl not adjusting to the travel schedule and deciding to stay up until about 4 am), but I kept an eye on the RocheWANTED! reps during the chats, because I wanted to see what they were reacting to. (That, and there was this long table set up at the back of the room, where a few of the Roche team members sat, watching us.  So I went over to them and let them know I was watching THEM.  Now the student has become the teacher, grasshopper.  /Confucius rant)

Overall, discussions were interesting.  Meter accuracy has been a hot topic for a while now, with the FDA meetings and an explosion in the blogosphere, and it was a topic of utmost importance for me during the course of my pregnancy.  It amazes me still that meters are "allowed" to be 20% off, and that we almost have to choose accuracy over cost when it comes to test strips.  (More on that later.)  And while the ADA panel of guests answered questions, I still couldn't help but wonder how the ADA spoke for me, as a person with type 1 diabetes.  (More on that later, too.)  

But the Summit itself wasn't about the discussions or the agenda of our host Pharma company.  (Even though, and I'm being completely honest here - I'm impressed that Roche wants to sit in the same room with a bunch of bloggers.  We aren't known for being quiet or demure, that's for damn sure, and we don't have a penchant for butt-kissing.  So they get us and our opinions, raw and unadulterated.  Yet, this is the second year they've invited us to meet with them.  I remain impressed.)  The Summit is about bloggers getting to know one another offline, and whether or not Roche understands that aspect wins out over any Pharma agenda, it doesn't matter.  People power wins over scheduled discussions.

So thanks to the Pharma company that dared to play host to bloggers for the second year in a row.  And thanks to the diabetes blogging community, which plays a huge part in improving my emotional diabetes health. 

(Oh, and thanks to the Photobooth, which let Scott and I pretend to be lions in the first shot and let us see up George's nose in the last one.)

June 22, 2010

Pregnant With Pre-Existing Diabetes?

For anyone who has been reading my blog since my engagement three years ago, you know that motherhood has been on my radar for a long time.  Longer than marriage.  That quest for a decent A1C, that desire for a "normal" pregnancy, and that hope for a happy and healthy baby.

Buy this book!Part of the reason I wanted to write about my pregnancy here on SUM is because there wasn't a lot of information out there about pre-existing diabetes and pregnancy.  There was a LOT of information on gestational diabetes (obviously), and type 2 diabetes got some good press, but type 1 was sort of swept under the rug.  Thankfully, there were a few diabetes bloggers who had chronicled their journeys, and I wanted to add my voice to that hopeful chorus.   

But also thankfully, Cheryl Alkon had taken the topic to her publisher, and she penned the first book on managing pre-existing diabetes and pregnancy.  And I'm very honored to have been both featured in her book (as a women preparing for pregnancy) and to have her contributing here on SUM:

Doom and gloom. That was the message I got several years ago when I first thought about trying to have a baby while also dealing with my type 1 diabetes. Whether at the doctor's office, going online, or reading the very few books about the subject, trying to get and be pregnant while managing blood sugars, taking insulin, closely counting carbs (and avoiding a lot of low-carb proteins that were good for blood sugars, but bad for babies-to-be) all sounded like a nearly impossible task. One fraught with higher risks of birth defects, overweight babies, worsened diabetes complications, and more.

But I also saw type 1 friends who had healthy babies and sensed what could be possible. This spurred me to research, craft a book proposal, and eventually devote myself to publishing an insider's guide to pregnancy with type 1 or type 2 diabetes. I'm thrilled to say that, five years later, "Balancing Pregnancy With Pre-Existing Diabetes: Healthy Mom, Healthy Baby" was published by Demos Health this spring, and has been enthusiastically welcomed by others who, like me, craved the inside story about how to have a healthy pregnancy and baby while managing diabetes.

I had the pleasure of receiving an advance copy of Cheryl's book just before my baby was born, and even though I was in my third trimester and just weeks away from delivering my daughter, it was so reassuring to read about all the things that could go right.  A diabetic pregnancy is a high-risk one, and the challenges can lead to some tough emotional roller coasters and some scary medical experiences (see also:  stuck in the hospital for a month) - but these pregnancies can also lead to a healthy, happy baby.  (See also:  BSparl)  Touching on everything from pre-conception to managing the months of the pregnancy to post-delivery recovery and how to wrangle in diabetes control once again, this book was exactly what I needed to read while pregnant with my daughter.  I only wish it had gone to press before I had conceived!

If you are a woman with diabetes and you're thinking about becoming pregnant, this book is a good resource for you.  If you are the partner of a WWD (woman with diabetes) and you want the full story on how pregnancy and diabetes can mix, this book is a good resource for you, too.  And if you are the parent of a woman with diabetes and you want to know that your child can have the same chances of a healthy pregnancy as any other woman, this book is a good resource for you as well.  

Cheryl will actually be speaking in Boston in the coming weeks (the first event being THIS WEDNESDAY - sign up!), so if you'd like to hear more from Cheryl in person (and meet my endocrinologist, who consulted on the book with Cheryl), you can attend a discussion this Wednesday.  For more details on upcoming events, check out Cheryl's post on her blog.

Thank you, Cheryl, for giving new moms and moms-to-be with diabetes a sense of peace.  And congratulations on your BIG ANNOUNCEMENT on your blog today!

June 12, 2010

Six Week Follow Up.

Yes, I have used this image before.  Yes, I am lazy.  :)For the last year of my life, it's been a monthly visit to the endocrinologist, and then once I was pregnant, the dam broke loose and I basically had a cot set up at the Beth Israel/Joslin pregnancy clinic.  Oh yeah, and then I spent a month at the hospital while waiting for BSparl. 

I have doctor burnout, big time.

So I'm done with doctor's appointments for at least a few weeks.  Mentally, at least.  (Because there is another one scheduled for August - WTF?)  But last week, I had my last appointment, for a while.  I was up at BIDMC for my "six week follow up" appointment (which took place seven weeks after the birth), and I met first with my endocrinologist. 

"How are you feeling?"

"Tired.  That's normal for a new mom, right?"

"Exhausted is more normal," she said, as she opened up my file on the computer.  We ran through my vitals, going over the medications I'm taking, the ones I'm not bothering with anymore, and how my blood sugars have been reacting to new mommyhood.  

"I've had some really good days, but the bad days are like epically bad.  Like 300's and 400's kind of bad," I said, looking at the floor.

"We want to prevent those highs, and the lows that either cause them or follow them, but you aren't the first postpartum patient I've seen who is hitting these kinds of numbers.  It's normal.  You'll even out," she said.

My basal rates seemed to be okay, but we did some tweaking to my afternoon/evening insulin:carb ratios (going from 1:12 to 1:15, which is math beyond my capacity).  Overall, I've had some nasty numbers, but my endocrinologist reassured me that my A1C wouldn't be too awful, because I wasn't letting any of those numbers ride.  (And when she called me on Monday to let me know what my lab work results were, my A1C was sitting comfortably at 7.0%.  Some people might call that too high, but I'm calling it a wicked victory for me.)

After I met with my endo, I was off for my exam with the OB/GYN.  Not to be terribly TMI, but I can't stand the pelvic exams.  They are unholy and cruel and a very strange way to spend an afternoon.  (Not only that, but I can't figure out why I'm not allowed to greet the doctor while I'm dressed.  No, they send her in only after I'm clad in the awkward paper johnny, with my regular clothes balled up on the chair near the examining table.  And it was the first time I had met with that specific OB.  "Nice to meet you, too!  This is my floppy body.") 

Thankfully, I appear to be healing well, both inside and out.  My c-section incision doesn't hurt anymore, and even though my lower abdominal muscles are currently useless and squishy, I am recovering like a "normal person."  (Read:  Not a diabetic who has seen 400's three times in the last eight weeks.  Nasty.)  There is still a little bit of light bleeding (not from the scar, silly), but my doctors told me the bleeding can last as long as nine weeks.  (Yay.)  The scar is shorter, and a light pink color as it attempts to heal.  I can't see the staple holes anymore, and when I spy the scar in the mirror, I don't want to jump out the window due to grossed-out'ed-ness.  That's progress!

So I'm cleared for "normal life," which includes being able to pick up the carseat while the baby is in it, which means I am no longer tied to my house.  THANK GOD, because I swear I was hearing the cats talk about me - in ENGLISH - which means my mind was starting to leak out.  Onward!  To normal life!

(Normal life - ha!  That's redefined with each messy diaper and baby smile.)

May 28, 2010

You Know You're a Diabetic Mommy When ...

You know you're a cat-shaped rattle when ...You know you're a diabetic mommy when ...

  • The bottle of glucose tabs is just as important as the bottle of breast milk in the diaper bag.
  • You have already started wondering how you're going to explain "juice" as "medicine" to the kiddo.
  • When you wake up for 3 am feedings, they double as a 3 am blood sugar check.
  • You start cooing sweetly at your meter when it gives you a result of 100 mg/dl.  ("Oooh, what a good meter you are!  Yes you are!")
  • Your baby ends up with a dot of blood on the back of her pajamas from your middle-of-the-night blood sugar check that didn't stop bleeding right away.
  • When you talk about "the pump," you need to clarify "the insulin one, not the boob one."
  • Sometimes you have to draw numbers to see who gets to feed the baby.  And by "draw," we mean blood samples.
  • Nothing makes you happier than a full baby with a clean diaper and a full pump with a full battery.
  • You need a diaper bag just for diabetes supplies.
  • Your bedside table has just as many burp clothes as used test strips gathered at its base.
And when the Dexcom starts to BEEEEEEEP!, you wonder if it needs a diaper change.

May 26, 2010

Oxygen Mask.

Gotta wear mine before I can help BSparl.In the airplane safety manuals, they instruct you to, in the case of an emergency, put your oxygen mask on first, before assisting others with theirs.  Makes sense.  Can't help someone if you are in need of help, yourself.

Chris and I reference the "oxygen mask" all the time, mostly when I'm low.  During the course of the pregnancy, I had some wicked lows that kept me from attending conference calls, making it to dinner meetings, and even just meeting a friend out for coffee.  "I'm going to be late, but I need a few minutes.  Oxygen mask, you know?"  And Chris would nod, knowing that I was waiting until my blood sugar was stable before I headed out. 

But as I wrote about yesterday, I'm in the middle of The Suck.  Can't wrap my head around what I need to do in order to take care of myself, because I'm too overwhelmed with what my daughter needs.  The baby learning curve is pretty steep, and both Chris and I being schooled on just a few hours of sleep.  My baby is well-cared for, but my diabetes management has seen better days.

... so I guess my baby isn't as well-cared for as she could be.  Because I'm trying to put her oxygen mask on while fumbling with my own.  

Yesterday's post had some good ideas in the comments section, and I'm going to try and implement them going forward.  Like the testing suggestion.  I'm already testing my blood sugar before I feed the baby, so now I need to find other benchmarks in my day to assign testing to.  I'm working off a mental "even numbers" schedule today, making sure that I test at all the even hours.  I'm awake around 6:15 am every morning, so that means I get a 6 am fasting, and then a test every two hours. 

Some other things I simply need to make part of the routine.  So it becomes natural(ish).  Like the Dexcom.  That tool is extremely useful to me ... when I look at it.  For the last 11 days, I had a sensor in and the Dexcom was working great, but I wasn't looking at it.  The receiver would sit on the dining room table while I worked on my laptop and I'd barely pay it any mind.  Then, one night when it was pinging because I was high, I turned off the high alarm so that it wouldn't wake up BSparl.  Being the dingbat that I am, I left the high alarm off.  For four days. WTF?  What's the point of wearing the device when I'm not using it when I need it most?  Today, a new sensor goes on and I'm determined to reset the alarms and to actually use the data.  (Otherwise, what's the point?)

And then there's what Chris and I call "life stuff." Like remembering to call in my reorder for insulin to my mail order pharmacy.  And then remembering to pick it up from the mail drop.  Or remembering to throw a bottle of glucose tabs in my purse or the baby bag, or grabbing a back-up insulin pen, or making sure I have enough test strips in my meter case to get through the day.  Maintenance.  Life stuff. 

But I can't do all this stuff at once.  Baby steps, right?  Today, I'll start with testing more frequently and rearming myself with the Dexcom.  I threw a bottle of glucose tabs both into my purse and the baby bag this morning, and I called in my insulin reorder a few minutes ago.  New bottle of test strips is floating around in my purse.  Small changes that will hopefully make a big difference in how things roll out, diabetes-wise.  Because the better care I'm taking of myself, the better care I'm taking of the little BSparl baby.

Oxygen mask, you know?

May 25, 2010

The Suck.

Bright?  Not me these days.While motherhood is going well and I'm completely in love with my daughter, I'm reminded, daily, that diabetes doesn't care if I've slept or if I have carefully counted carbs or if I've just changed my infusion set.  Diabetes doesn't give a shit about my schedule.

It's The Suck.

Like last week, when at 4:30 am, my "alarm" went off - also known as BSparl starting to fuss and wail from her bassinet in our bedroom.  Not a problem.  I woke up, tested my blood sugar, and saw that I was 176 mg/dl.  That number (albeit spiky) works just fine for feedings, so BSparl and I spent some quality time hanging out, having an early snack, and debating where exactly the sun hides behind the trees before it starts to poke out.

We both went back to bed around 5:45 and slept until the next alarm went off - the Dexcom BEEEEEEEP!ing wildly at me at 8 am.

"Do not wake up the baby, you."  I grumbled while fumbling for the receiver on the bedside table.  "LOW.  Under 55 mg/dl" was the warning it was flashing up at me.  While BEEEEEEEPing.

"Shhhhhh!!"  I unzipped my meter case and deftly stuck a strip into the top of the machine.  I wasn't sweaty, my brain was functioning fine (aside from shushing inanimate objects), and I felt physical capable.  Maybe the Dexcom was just being finicky and throwing lower numbers?

"36 mg/dl"

Well shoot.  Not a whisper of a symptom, either.  I got up from the bed and wandered out to the kitchen, where Chris was making his protein shake.

"Can you keep an ear on the baby?  I'm 36 and just want to grab some juice," I said, opening the fridge door.

"Of course."  Pause.  "What?  You're 36??"

"Yeah.  No symptoms, dude.  Not even one."  I chugged a few sips of grape juice and put the bottle back in the fridge.  "I feel fine.  The Dexcom woke me up."

A blood sugar of 36 mg/dl without a single symptom, other than a wailing Dexcom and a bit of a groggy feeling.  But, in true diabetes form, once my blood sugar started to rise, I felt the symptoms acutely. 

"I feel pretty bad right now."  Shunk.  "Fifty-six.  Why do I feel worse at 56 than I did at 36?"

There's no rhyme or reason to diabetes.  The symptoms of lows and highs change with the seasons, it seems.  And they come without warning, these numbers.  Sometimes it's a hormonal or emotional surge that sends numbers pinging.  Other times, it's a little, teeny technical glitch that sends thing spinning.

Like two nights ago, when I bolused for a snack and felt a damp spot on the side of my shirt.

"What the ..." and I probed with my fingers and felt that telltale wetness around the gauze of my infusion set.  I tugged up the side of my shirt and gave the spot a sniff - yup, that bandaid smell.  Frigging infusion set was leaking some how.  No symptoms, though.  I wasn't thirsty, I wasn't lethargic, and I was actually just about to head off to the gym.  I felt pretty okay.  Problem was, I hadn't tested in about four hours, nor had I peeked at the Dexcom.  So basically, I didn't have a clue what was going on in my body. 

I tested my blood sugar and a 423 mg/dl grinned back at me.   

(Have I mentioned Yosemite Sam yet in this post?  Suffice to say, I rocketed through a list of curse words that would have caused Yosemite Sam to give me a frick-a-frakin' high five.)

New site, quick injection with an orange capped syringe from the fridge, a ketone test (negative), and an hour and a half later, I was down to 195 mg/dl.   But I was pissed.  Because during the course of my pregnancy, I maintained an A1C between 6.0% and 6.5% and I busted my butt to keep myself controlled.  But now, with my body reacting to adjusting levels of hormones and a serious lack of concentration due to a truncated sleep schedule (read:  no sleep 'til Brooklyn, with Brooklyn being college, I think), I'm all over the map. 

I'm frustrated with my control, or lack thereof.  Trying to figure out my post-pregnancy insulin needs and taking care of my little girl have become a full-time endeavor, and I'm not getting it completely done on either front.  I have to buckle down.  These epic lows and highs are not fun, and are wrecking havoc on my healing body. 

Next week, I'm back at Joslin to see my endo.  Diabetes needs to take center stage until I can get things under better control.  It's my priority.  I need to get back to logging, to testing every hour and a half or so during the day, to actually cooking meals instead of just snacking when time allows, to changing my infusion set when it's due, not when it's convenient. 

... after diaper changes, of course.  And breastfeeding.  And BSparl laundry.  And pediatrician appointments.  And 3 am feedings.  And that occasional moment when I lock the bathroom door and look at myself in the mirror with determination and say, "Get it together, Mommy."  

May 10, 2010

A Day in the Life of a New Mom with Diabetes.

For D-Blog Week, Karen challenged the diabetes blogging community with a week's worth of blog prompts. Today is "A Day on the Life," and I've decided to focus on my new life with BSparl.  (Because if I tried to pretend that motherhood isn't affecting my diabetes, I'd be lying my face off.)

DING!!!  Game on.

A day in the life of a mom with diabetes5 am:  Alarms?  We don't need no stinkin' alarms.  Because now we have little baby girl who wakes us up at all hours of the night. 

When BSparl starts to fuss from her bassinet, either Chris or I leans up to check on her to make sure she's okay.  Since Chris usually does the 1 am feeding with a bottle, I try and do the 5 am feeding.  Since I'm breastfeeding, what I need to do first is check my blood sugar.  Anything less than 120 mg/dl and I'm snacking while she's eating.  I start this feeding at 98 mg/dl.

5:15 am:  BSparl is done with one side.  I switch her to the other side to finish eating, and I brush the foil wrapper that the fruit snacks came in to the floor.  

5:45 am:  BSparl is fed, burped, changed, and tucked back in.  I test my blood sugar again - now I'm 74 mg/dl and the Dexcom is showing a bit of a drop.  I wander out to the kitchen for peanut butter and a piece of toast.  (Not froast.) 

7 am:  Up again, only this time because the Dexcom is blaring at me.  49 mg/dl.  WTF?  Breastfeeding has very unpredictable effects on my blood sugars.  Some mornings, it doesn't make me low at all.  And then other mornings, it makes me plummet.

7:30 am:  BSparl and Chris are asleep in the bedroom, so I settle in on the couch with my laptop and a cup of tea.  My goal?  Answer some emails, write a blog post, finish some stuff that always seems to be due and I'm chasing the deadlines of, and use the breast pump to stash some milk for BSparl.  My insulin pump tubing sometimes gets tangled up in the breast pump tubing.  Which makes me think I'm wearing too many freaking pumps.

9 am:  Husband and daughter emerge, both sporting the same furrowed brow of the morning.  BSparl needs to be fed again, so I test my blood sugar to see where I'm at.  145 mg/dl - thank goodness.  Enough with the lows.  Bring on the BSparl!

11 am:  All of a sudden, it's almost noon, and I haven't eaten anything since 7 am.  I also haven't answered a single email.  Or finished the article I needed to finish.  My mornings are usually spent testing my blood sugar, feeding BSparl, changing her diapers (which have baby Sesame Street characters on them, which makes me laugh.  Because what do you call "Baby Big Bird?"  Little Bird?), and doing laundry.  I test my blood sugar - 118 mg/dl - and thank God that it's not pinging all over the damn place today.  Because some days it does. 

High Noon:  Still haven't eaten.  I force myself to stop and devour a Greek yogurt.  Blood sugars are holding steady.  But my pump site is aching a little - when was the last time I changed out the site?

Noon-thirty:  BSparl and I investigate the site.  Well, she hangs out in her bouncy chair on the bathroom floor while I take a look at the infusion set.  Looks fine - edges are peeling a bit - but it's only been four days.  Even though the reservoir isn't anywhere near empty, I opt to change the site because it's achy.  And because if I don't do it now, while I'm thinking about it, it will be another full day before I remember.  With all of my focus on BSparl and adjusting to life as her mommy, sometimes diabetes takes a wicked back seat.

1 pm:  New infusion set is in, baby girl is getting a bottle of breast milk because my own breasts need a break sometimes, and I still haven't answered one single email.  Is this why people take maternity leave?  I need some coffee.

2:15 pm:  Thirsty as all hell.  Test again - oh, that's nice.  233 mg/dl.  Frigging pump site change ... did I forget to take a little 0.3u bolus before pulling the site?  That seems to be the only way for me to avoid post-site change highs.  But of course, I had forgotten to do that.  And now I'm basking in the warm warming glow of a high blood sugar.  FanTAStic.  Still haven't eaten lunch, and now lunch is on a further delay due to the high.  I bolus down the high.

2:45 pm:  Dexcom shows that I'm dropping.  Meter confirms the same - 177 mg/dl.  Thing is, with the baby now out of me, I'm trying to figure out what my body's insulin needs are.  And that's tricky, because with breast feeding, I am never able to do an accurate basal test.  I have an appointment with Joslin in two weeks (for my 6 week follow up after surgery/birth), so I'm trying to log blood sugars to give my endo something to go on.

2:46 pm:  CRAP!  I haven't logged any blood sugars in three days!  With BSparl in my arms, I open up my laptop and try to find the spreadsheet.  I locate it, and then try to scroll through my meter memory and type the blood sugars into the spreadsheet using one hand.  BSparl decides this isn't a good time for her, and she makes a sound not unlike a can of shaving cream being deployed.  (She is a delicate, fragile, pooping flower, this child of mine.)  Diaper change time!

3:30 pm:  Lunch.  Finally.  Blood sugar is 109 mg/dl.  Lunch is a turkey and cheese sandwich, even though I'd much rather go low-carb these days to help lose the pregnancy weight.  But without carbs, I'm low all the time after feeding BSparl, so carbs it is. 

4 pm:  Time to head out to the grocery store and then to the post office.  BSparl hangs at the house with her dad while he works, and I test once more before getting into my car.  167 mg/dl.  How is the post-prandial that high?  I counted those stupid carbs.  My insuiln:carb ratio, I thought, was settled back into 1:12.  I need to test that ratio again, but no time today.  Must run errands.

4:04 pm:  As much as I love my daughter, I felt guilty blasting the Beastie Boys while she was inside of me.  Without her in the car, I can crank up the volume of the music again.  So i do.  As I head to the grocery store.  Damn, my life is a thrill a minute.

5 pm:  Walking out of the store, I realize that my Blackberry has been pinging for three hours and I haven't looked at it yet.  Checking the emails, I see that 75 emails have come in since 7 am.  And I STILL haven't answered a single one.  Whoops.

6:30 pm:  It's time for BSparl's dinner.  And then we read a book together - I like Dr. Seuss, but sometimes we read other books because I can only make my mouth navigate words like "Th'need" so many times before I start to either giggle or accidentally spit on my daughter while reading.  

7:45 pm:  Chris heads down to the gym and I prepare to go when he gets back.  (No, I'm not really "exercising."  Can't for another two weeks, due to the c-section.  But I can go for walks on the treadmill, so that's what I do.)  I test my blood sugar (139 mg/dl) and get all my crap together for the gym:  Dexcom receiver, meter, cell phone, reaction treaters, and that ever-elusive pair of workout pants that actually FIT. 

9 pm:  Back from the gym, blood sugars are steady for once, and BSparl is napping.  FINALLY, I answer some emails and finish up that article.  Oh crap - dinner!  I find something in the kitchen that doesn't require much assembly.

11 pm:  I realize that, since 5 pm, I've either fed BSparl or pumped six times.  How is that even possible?  Sure does account for the unpredictable blood sugars, though.  My body is in a constant state of "feed," making trends nothing short of chaotic.  And I have to be honest - I'm not sure I have the mental bandwidth to wrangle in diabetes and motherhood with any kind of precision these days.  Working off of very little sleep, and trying to understand the new swell of hormone changes in my body, is frustrating as hell.  Diabetes fine-tuning isn't my top priority these days.  I just want to coast as safely as I can at the moment.  (Note to people who may want to lecture me about my own health: Back off for a few weeks before you run cryptic commentary.)

Midnight:  What am I thinking, still awake??  BSparl will be up in two hours for her 2 am snack.  I'd better restock the bedside table with low blood sugar snacks and call it a day.  

Midnight-thirty:  Whoops, forgot to test.  94 mg/dl.  Dexcom confirms it's a steady number.  Off to bed!

Game Over ... until 5 am.  :)

April 16, 2010

Looking Back: Between Dinner and a Movie.

I didn't appreciate everything my parents did for me as I grew up with diabetes, but hindsight being 20/20, I definitely have an appreciation now for their hard work and dedication to not only my health, but keeping the family's routine as "normal" as possible.  And now that I have a child of my own, that appreciation is deeper than I thought possible. 

This post ran here last summer, and I still mean every word.  (Including the bit about the alligators in the carpet.  I know my brother and sister and I weren't the only ones who avoided them!) 

*   *   *

Saturday nights when we were very small were the best. 

We made blanket forts and used every damn cushion in the couch.  Laying pillows on the floor, we'd jump from down-filled island to island, pretending that the carpet was infested with alligators and only by balancing on the pillows would we be safe.

The babysitter always promised to make healthy dinner, but usually we ate popcorn, chicken fingers, and drank diet soda by the bottle, filling the glasses to the very brim and frantically slurping the carbonated foam awayI loved this doll.  I even pretended she had diabetes.  Which is a  bit odd. before it could spill over.

My favorite babysitters were the ones who played with us, not just sat there and talked with their boyfriends on the phone.  Carolyn was my favorite one of all and I named my Cabbage Patch doll after her that year.  She was pretty and smart and the characters she pretended to be were so clever.  She was the perfect example, to me at seven years old, of what a 'hero' really was.

My parents had a standing Saturday night "date night," and they would go out to dinner either alone or with some friends, then maybe to a movie.  Usually they left when it was still light out, while we were still outside playing in the yard or just coming in to have a snack.  My brother and sister and I played and fought and made messes and told stories and generally destroyed the house, like little kids do.

Only now, when my memory is jogged, do I remember the headlights pulling back in the driveway, between when dinner ended and the movie began. 

Dad would wait in the car while Mom ran in quickly to test me and give me my bedtime insulin injection.  Then she'd say goodnight to all of us and run back out to the car to continue "date night."

Only now do I remember those moments and wish I'd named "Carolyn" after my mother, instead.

April 13, 2010

Diabetes During the C-Section: Here's the Plan.

Preparing for the diabetes part of BSparl's birthI've received a lot of emails about the how diabetes will be handled during the actual "birth" of Ms. Bsparl, and while I won't have all the details until it's all over with, I do have a few answers for now.  I talked with my OB (who will be performing the c-section) and my team at Joslin about some of the details.  This might be a detailed, kind of boring post, but I wanted to make sure I'm answering all the questions possible! 

Here's what I know so far:

On Wednesday night, an IV will be "installed" in preparation for the insulin drip.  I'll still have my insulin pump on, though.  As of midnight on Wednesday, I won't be able to eat anything from that point until post-surgery, so the IV will be at the ready in case I go low during the course of the night.  In the event of a low blood sugar, my team will do one of the following:  suspend my insulin pump, administer glucose through the IV, or potentially allow me to drink apple juice, depending on the circumstances. 

The c-section will be first thing in the morning (8 am), so the night before will be spent checking my blood sugar with the glucose meter every 30 - 45 minutes to ensure the tightest, steadiest control possible.  In my circumstances, I plan to keep the Dexcom connected throughout the night, too, to help with that goal.

The morning of the c-section, I'll get up wicked (pissah) early (5:30 am, I think) and I'll rip out my insulin pump and remove the Dexcom sensor.  The nurses will hook me up to the insulin drip and my blood sugar will be monitored - wait, strike that.  Stalked.  :)  I'll be hooked up with the drip, etc by 6:30 am and up to the delivery room.

We'll move into the operating room and my blood sugar will be monitored stalked by the Joslin team while the OB/GYN team prepares to deliver my baby girl.  Chris will be in the waiting room while they administer a spinal epidural (Do not Google this, because it will make you cringe.  I made the mistake once of Googling it.  Never again.  It made me want to give birth orally.) and then they will ensure that my lower half is numb and ready for surgery.  Chris will scrub in and be brought in to the room, where he'll be situated up near my head and the surgery will begin.  My team said that Chris is welcomed to hold my meter and test my blood sugar at our discretion, and the Joslin team will be doing the same using their meter or mine, depending on our preference.  But if I feel nervous about going low, etc, I am able to keep tabs on my own numbers. 

During the course of the surgery, I'll have a regular IV in for fluids, etc, and then the insulin drip will be combined with a glucose drip, the contents of which can be adjusted based on my blood sugar needs.  So if I start to spike, they can increase the insulin titration.  If I start to drop, the glucose can be turned up.  All of this is handled by the Joslin team, so my OB team can concentrate on BSparl's escape.

According to my doctors, the whole c-section will take about an hour, from start to finish.  Bsparl should be in Chris's arms by 8:30, and I should have all my pieces back together again by 9:00 am.  I'll be brought to the recovery room and Chris and BSparl will join me soon thereafter, barring any issues.  The insulin/glucose drip will remain in until I'm able to eat something, at which time the pump will be reconnected (by me), and after an approximate 30 minute overlap, the insulin drip will be removed. 

The Joslin crew told me that my postpartum insulin settings on the pump will be a whisper of what they were during the pregnancy, and about a third of what they were pre-pregnancy.  At this stage, they're assuming that I'll jump down to a midnight to midnight basal rate of 0.3u, an insulin-to-carb ratio of 1:20, and a sensitivity factor of 1:80.  (My pre-pregnancy basals were more around the 0.4 - 0.6u range, an I:C of 1:10, and a sensitivity factor of 1:55.)   And once I'm breastfeeding, all bets are off as to how that activity could affect my blood sugars.  Only time will tell. 

So that's the low-down on how the diabetes, at least, will be handled during delivery.  I don't want to think too much about the surgery itself, because it freaks me out.  But handing over all of my diabetes control also has me a little tweaked.  After over 20 years of doing it myself, it's hard to grasp the concept of "let someone else handle it entirely."  But I know I'm in capable hands with Joslin, and I know that my focus needs to be on the baby. 

She's worth every hurdle that we, as a family, have overcome to make it to this point.

Because at some time during the whole ordeal, her little teeny cry will cut through all the noise, and in that moment, I'll become a mom. 

April 02, 2010

Day Seven in Captivity.

Little on the down side today, thanks to having just marked one week "in" and with still two to go.  What the hell is there to write about, from the mind-numbing confines of my hospital bed?

At the moment, BSparl and I are hooked up to the fetal monitoring system, and I can hear her heartbeat pumping along like a rhythmic Clydesdale and can see the movements of her little 5lb, 5oz body being tracked on the graph.  It looks almost seismic, like a BSparl earthquake.  


They haven't checked the protein levels in my urine in a day or two, but things appear to be holding steady.  Blood pressure is climbing ever-so-slightly, but monitored constantly, and there's room for titration in my Labetalol medication (read:  they can give me more of that crap).  Still rockin' the heparin injections twice a day (hate) and still not sleeping through the night thanks to the monitoring.  (Which I understand the necessity of, but it's not making for "relaxing bed rest."  Bed rest is a misnomer.  This is more like jail where the wardens grin and mean well.)

One of the hurdles I'm having a little trouble with is the diabetes management aspect of things.  The Joslin team comes by once a day to review blood sugars and make suggestions, and they are the experts in all-things diabetes.  However, I am the expert in all things specific to MY diabetes, so I've been working hard to achieve a tolerable blend there.

For example, one of the (very nice, very knowledgeable, mind you) endocrinologists had some commentary about a post-prandial blood sugar of 137 mg/dl that I had two days ago.  In my mind, 137 mg/dl an hour after eating is downright badass, and I'm very happy with it, especially considering that the pre-meal number was 84 mg/dl.  Good control, in my eyes.  

"Well, this is a little high.  We'd like to get this post down."

I don't mean to be rude.  I try to be a good patient, a "patient" patient, and to find that careful blend I had mentioned, the one of my non-medical knowledge and their medical knowledge of diabetes.  But it was 8 in the morning.  And it was the third time I had been woken up by a doctor who wanted to review my goods.  And I didn't agree that 137 mg/dl post-prandial was too high.

"Really?  Too high?  I don't see it that way.  I think that's a number to aim for, especially seeing as how I leveled out to 98 mg/dl at the two hour mark.  That's a respectable peak, don't you think?  Otherwise, I'd be treating a low at the two hour mark."

"Yes, but it should be lower than that."

And I sort of lost my cool.  

"Okay, well how about we all call the FDA and get them to tighten up their requirements for 'what's accurate' to something a little more precise than 20%, and then we can start griping about a 137.  Because for all we know, that 137 mg/dl could actually have been a 110 mg/dl, and then I'm right in the acceptable range, right?"

(I am Kerri's terrible, bedrest-fueled, pregnant rage.)

They agreed that 137 was okay.  And that revisiting my post-prandials after another day of review would be a good idea.  And then the fleet of them shuffled out the door.  I felt bad about blowing off steam, but really - I'm in no way a "perfect diabetic," but these days, I'm running really tight and carefully with my numbers.  Let's remember that the reason I'm having post-prandial peaks is because - oh yeah - I have diabetes?

It's challenging, that feeling of having people take my diabetes management control away from me.  Not that I have all the answers or have it all figured out, but I've been living with this a long time and my own instincts and experience should be as strongly considered as the vast medical knowledge of my new, trusted caregivers here.  I'm no diabetes expert, but I'm pretty well-versed when it comes to "Kerri."  ;)

Eventually, I'll find a way to balance my issues with control while "in captivity," but until then, I may need to vent here a bit.  Because I'm pretty sure they're not reading me. 

... Whoops.

March 22, 2010

Health Care Reform: How Does it Affect People with Diabetes?

I can haz a question?The health care reform bill "doesn't fix everything that's wrong with our health care system, but it moves us decisively forward," said the President yesterday.  Insurance companies will be under government regulations, coverage can't be denied based on pre-existing conditions, and the bill should be signed as early as this Tuesday.

Wait ... coverage can't be denied based on pre-existing conditions?  

According to this New York Times editorial, "The biggest difference for Americans who have employer-based insurance is the security of knowing that, starting in 2014, if they lose their job and have to buy their own policy, they cannot be denied coverage or charged high rates because of pre-existing conditions. Before then, the chronically ill could gain temporary coverage from enhanced high-risk pools and chronically ill children are guaranteed coverage."  

I've always wanted to take that leap and run my own business.  I enjoy working in new media and health care, I like working hard, but what kept me from making a bold move was pure and unadulterated fear.  It was the same fear that caused me to immediately grab my diploma after college and start working at a crappy job two days after graduation, simply so I wouldn't lose my medical insurance coverage.  (I was a bank teller.  I have no math skill to speak of.  Tell me how that career choice was safe for anyone.)  As a type 1 diabetic, medical coverage takes precedence over a paycheck, seeing as how I have never had the option of purchasing a private policy.   (Something about that whole "taking insulin" thing makes insurers squeamish.  What, like taking injections ever kept me from becoming a productive member of the work force?  Yet I'm allowed to pay my taxes.) 

Sometimes, it takes a bold move to force a bolder one.  I left my job last October in pursuit of one thing:  a healthy pregnancy.  The fear that once held me back was replaced by the overwhelming desire for a healthy pregnancy, and Chris and I moved forward without hesitation.  But, of course, we had to make sure there wasn't a lapse in my insurance coverage, and with pregnancy being considered another pre-existing condition, I remained insured by COBRA.  Thankfully, once BSparl is born, we have another plan in place.  But the details of my insurance coverage aren't the focus here.  Nor will they be.

The point is now there are options for people with diabetes.  Or at least that's what I'm hoping.  I've been pouring through the newswires and seeing, over and over again, how pre-existing conditions can't be denied.  Reuters reports that  "Uninsured adults with a pre-existing conditions will be able to obtain health coverage through a new program that will expire once new insurance exchanges begin operating in 2014."  This is in addition to insurers being "barred from excluding children for coverage because of pre-existing conditions."  And I remember when I was a kid and my parents dealt with that very issue after my diabetes diagnosis.) 

Newsweek sheds a little more light on this, stating, "Insurers who offer plans on an insurance exchange will be prohibited from rejecting customers with preexisting conditions or charging them higher rates. But the exchanges won't be mandatory until 2014. In the meantime, people with preexisting conditions will be permitted to enter a 'high-risk pool,' which offers caps on premiums and out-of-pocket spending. Still, there's a catch: only people who have been without coverage for six months are eligible. The rule is designed to stop people from arbitrarily switching from their private insurance plans to the cheaper—but taxpayer subsidized—pools. But it means that people who lose their jobs can remain uninsured for a full six months." 

I don't know enough about the health care reform bill to speak eloquently about the details.  I am only exposed to what the media shows me, and what my research procures, and what pages of the bill I'm actually able to pour through and understand.  And I know that talking politics on the blog (just like talking religion) can be a very tough topic, because PWD have so many varying opinions and stances on these issues.  But I'm a person with diabetes.  And I'm hopeful.  I'm hopeful that this could be the beginning of diabetes not dictating my insurability.  I'm hopeful that people with diabetes will have the option to work in fields that inspire them, not just ones that insure them.  Diabetes has a hold on so much of what we do throughout the day and so many of our choices, and I'm hopeful that the passage of this bill will give back some options.

(Just a quick note:  I posted something on Facebook and the comments are impassioned, but respectful.  So far.  :)  If you are going to leave a comment on this post, you definitely don't have to agree with me or anyone else, just please be respectful.  Or I'll send Siah after you.)  

March 02, 2010

Questions About Growing Up with Diabetes.

Rockin' it old school.  Where's my gel pen?No WAY could I ever claim to "counsel" parents of kids with diabetes.  I'm not an expert, I'm not a doctor of any kind, and I don't have the first clue as to what I'm doing 90% of the time.  

So.  That being said, I will admit that I've emailed with lots of parents of kids with diabetes, and I've gotten so much out of that glimpse into what it's like to be the parent of a CWD.  Not counseling, but listening.  And learning.  Talking with these different parents has given me a whole new level of respect for what my mother and father did for me, growing up, and how I view my diabetes as a result of their care.

Over the weekend, I received a few questions from a parent that I couldn't quite wrap my head around.  They were big questions, the kinds that require coffee and one of those old school composition notebooks (and a phone call to my mom) to sort out in my head.  Here's my take on this mom's questions about growing up with diabetes:

How well did your parents do in managing your diabetes until you were able and independent?

I can't say my parents did anything short of remarkable work when it came to my diabetes.  And that goes for every parents of a CWD that I've met in the last few years.  I was diagnosed just before second grade, and my family didn't know anything about type 1 diabetes, let alone that it could ever effect their daughter.  They brought me to the hospital and stayed there with me for 12 days, learning how to inject insulin into oranges using syringes that they would eventually plunge into my own skin. 

My mother, in particular, took her role as "my pancreas" very seriously, and worked tirelessly to control my difficult blood sugars.  She tested me every morning when she first woke up, the sound of the ziiiiip on the black meter case stirring me just enough to poke my hand out from underneath the covers so that she could lance my fingertip.  She carried measuring cups in her purse and had a food scale in our kitchen.  My pancreas wasn't working hard enough, but my mother was.

This isn't to say that we were "perfect" in managing diabetes, or our emotions, or that we had one of those "unicorns and rainbows" types of relationships.  My parents and I battled endlessly about all kinds of stuff, from cleaning my bombsite of a room to my propensity to drive too fast to fighting over the boys I wanted to date to the diabetes I didn't want to control all the time.  Fights were part of the routine, but it wasn't because of diabetes.  It wasn't despite diabetes.  Diabetes was just part of the stuff we fought about. 

(And on the whole "able and independent" part, I'm still not fully either of those things.  I'm able to take care of myself, but I still lean on my parents, and my husband, and my friends for support.   And while I'm fiercely independent, I still need, and want, their help.)

Did you resent them?

No.  I never resented my parents for any of this diabetes stuff.  Not even when I wanted to convince myself that it was hard because they made it hard.  Diabetes is hard because it's diabetes.  Sure, my mom and I had blow outs about when she would say "We have to test our blood sugar," instead of "You have to test," but I grew to understand how much she was truly involved, even though I wasn't aware enough at the time

I've resented diabetes, though, which I know is hard for my parents to hear (and to read on this blog).  I do not like it, I didn't invite it, and I'd sell it to the lowest bidder without thinking twice.  I resent it for making me write To Do lists that a child has no right even worrying about, and I resent it now for making me feel for a kick from BSparl every time I have a blood sugar spike during the course of my pregnancy.  But my parents - my whole family and friends support team, honestly - have tempered that resentment for me by supporting me.  They don't coddle me, or tell me that "Things will be fine" or "Sure, you can go ahead and not care about diabetes."   They understand that this disease is serious.  And unfair.  And only sort of manageable.  But also that it doesn't have to own me.  It never has.  And it never, ever will.

What is one thing you could tell me to do that will make make this easier on [daughter's name]?

Blame the diabetes, not yourself.  Or your child.  Let her know that it's you and her against this monster, and you'll always fight beside her, not against her.  You're in this together, and she'll never be alone.

But Reader, you'll never be alone, either.  You've got all of us.   For the long haul.  :)

I wanted to give my answers to this mom of a little girl with newly diagnosed type 1 diabetes, but I also wanted to offer these questions up to you guys.  To get more than just my perspective, because so many of us have grown up with type 1 diabetes and might answer these questions in completely different, completely honest ways.  If you have insight to offer, please do! 

February 26, 2010

Diabetes 365: Diabetes is Every Day.

There's been a handful of photographers who have tackled the Diabetes 365 project for this year, and I'm proud to be in their company.  It's a very inspiring experience, to see how diabetes is reflected in the lives of the members of D365, and how it is captured through their camera lenses.

An update on Diabetes 365

Some of us are using our DSLR cameras, some of us our point-and-shoots, some documenting with our iPhones or our Blackberries, but every last one of us is showing our lives with diabetes, every day.  I know I've talked about this project before, but watching the photos stack up in the Diabetes 365 Flickr group and seeing how, and what, people with diabetes are choosing to document their lives with this disease is incredible.

You didn't need to join the group in January - it's a rotating door of participants.  If you want to join the Diabetes 365 group, you can jump in anytime and start.  Every day can be Day 1.  

February 25, 2010

Free Shower.

I love "free shower" - which, if you're diabetic and using an insulin pump or a CGM, you know that means "the shower when you're changing sites and you don't have any hubs connected to you."

It's nice to lather up and not worry about catching on an infusion set or a sensor edge.  Thing is, this is what's waiting for me when I'm done getting all cleaned up:

Oh I love me some free shower.
The potlock o' diabetes crap

Yesterday was "free shower" day for me, which is a rarity now that I'm wearing two devices.  The chances of an insulin pump change synching up with a Dexcom sensor change are pretty low, so when I'm swapping both, it's particularly nice.  And this scene on the bathroom counter is what needs to be reapplied after the fact.

That's the potluck of diabetes devices:  the Dexcom sensor, transmitter, and receiver, and then the insulin pump, infusion set, cartridge, and little bits associated with pump site changes (like that all-important insulin).   If you look fast, you can almost fool yourself into thinking it's a photo of make-up stuff, like any lady would have on her bathroom counter.  But the Sparlings don't have a "powder room," - we have a "site change room." 

I'm adjusting, though.  Don't we all?  Back when I first started pumping, I was freaked out about the whole "external symptom" because I'd existed 17 years without one.  Popping in those first infusion sets and clipping on the pump was a very surreal experience, and one that it took me some time to get used to.  ("Do I look like a robot?  Not really, but sort of.  Am I okay with looking a little like a robot?  Do I get special powers?  No?  That's only super heroes?  Okay, well what do robots get?  They're maids on the Jetsons?  WTF?"  The internal monologue was constant back in those days.)  Adding in the Dexcom sensor and receiver sent me back into that "Wait a minute ... I'm now like a SuperRobot!" mode. 

But now, it's been six years with a pump.  And almost two and a half years with the Dexcom.  So while free showers are nice and I like that feeling of not having anything attached, once I put on the new sensor and the fresh infusion set, I still felt fine.  The sites don't look so scary anymore. 

They look ... almost right.

(Note:  But it may be the ever-growing belly that's making things look more proportionate lately.  Ask me in eight weeks. :) )

February 24, 2010

The Good, The Bad, and the Eh.

The good, the bad, and the egg.  I mean, the eh.We'll start with The Bad:

  • Getting my sorry arse to Boston proper yesterday should have been a quick ride.  My first appointment was at 8 am, I was leaving my house with an hour and 15 minutes to spare (I had hopes of grabbing breakfast before my appointment and getting a little work done on the trusty laptop) but traffic on the way into the city dashed all hopes of getting there on time.  It took me two hours and fifteen minutes to make a 35 minute drive.  Needless to say, I was livid by the time I had arrived at Joslin.
  • And while I'm driving, I'm watching my blood sugar climb.  Crap on several levels, because as I edged closer to 170 mg/dl, I started to wonder if my insulin to carb ratio needed to be changed, I fretted about the effects on the baby, and I also realized that two hours in the car at an elevated blood sugar equaled "OMG I have to pee like you read about."
  • Also, felt a dampness in my armpit and became disgusted with myself, realizing I was sweating through my shirt?  Gross, Kerri.  That's just gross.
  • Arrived at my appointment 30 minutes late, they squeezed me in, and after I gave a urine sample, they told me that I was spilling ketones for the first time in my pregnancy.  FanTAStic.

Which leads me into The Eh:

  • Turns out that my blood sugar was climbing because my infusion set wasn't connected to my body.  The pump was on my hip, the site in my arm, but the two weren't joined at the set, leaving every bolus and every basal unit pooling into my armpit.  Thus explaining the stain on my shirt (and the fact that what I thought was sweat was, instead, vital insulin units).  Two hours without insulin explained the high, the headache, and the ketones.  And also made me feel extremely dumb.
  • My eye dilation was deemed "inconclusive" by the retinologist.  She said that my right eye was perfectly fine, but the left did still have two spots close to the macula.  Again, less an issue with the spots themselves and more with their precarious location.  "But I feel comfortable with you attempting a vaginal delivery.  But if you have a long labor, or a difficult labor, you'll need to have a c-section."  My initial response was "Oh, but I'd really like a healthy baby and healthy eyes for myself, so would a section be a better chance at having both?  Or do you just want me to push, possibly harm my left eye, and then possibly still have the c-section?  Does not compute."

But thankfully, there's still The Good:

  • BSparl remains at a steady, healthy weight, and her heartbeat was lovely enough to make my own skip a beat.
  • My doctor called me at nine o'clock last night to tell me that she reviewed my eye exam with the other high risk OB/GYN and they feel confident in recommending a c-section.  Their main concern is the Factor V Leiden issue, which could cause a clotting concern with the delivery wound, but I've already had my medical team advise me that I'd be on Heparin for a few weeks after delivery.  They just want the baby out safely, and for my eyes to remain intact.  I'm on board for that, as I'd like to be able to clearly see this creature we've created. 
  • And now I know how she's arriving, and I can start Googling that and freaking out.  No, I know not to Google and not to completely melt down.  But honestly, the whole "giving birth" thing, no matter the method, has made me nervous for years.  And it's strange to know that in eight weeks, I'll be doing it.

Which brings me to the best part of The Good:  Only 64 days until I can hold her in my arms and tell her I love her.   It's on. 

February 19, 2010

It's All Rainbows and Unicorns.

I love BSparl.  I love her little feet and her pouty lips and that feeling I get when she rolls around inside of me.  I love knowing that my daughter is just a few weeks away from becoming a part of our Sparling family, and I know that every moment of this pregnancy is completely worth every iota of effort and worry.

That being said ...Rainbow not included.

I'm starting to lose my mind a little bit.

I've blogged about the details of the doctor's appointments, and the ultrasound scans, and the way that diabetes has impacted my pregnancy, and vice versa.  But by the end of my posts, I feel better having purged the feelings and worry.  And I want to reassure women who have type 1 diabetes that a pregnancy is possible, and enjoyable, and like they all say - so, so worth it.

But, like I said, I'm starting to crack a bit.  On Tuesday, I'll be at 30 weeks, seven and a half months pregnant with just under nine weeks left to go.  And these last few weeks have been ... well, not exactly rainbows and unicorns.

  • Like last week, when a string of 200's had me bump my basal so high, on the heels of amped up nerves, that I overdid it and ended up with two 50 mg/dl's in the middle of the night.
  • Or on Monday, when a carefully measured breakfast and a carefully calculated bolus, delivered 45 minutes before the meal, sent my blood sugars rocketing up to 248 mg/dl and held there for two hours.  
  • Or the other day, when i realized that pregnancy is actually ten months long, not nine.  Damn lunar months, and why the hell didn't someone give me a head's up about that?
  • Or that yesterday, Joslin gave me the run down on the rest of my appointments that are scheduled.  There are 20 of them.  I don't understand how people manage a high risk pregnancy and keep their jobs. 
  • Or that next week, I'm having the eye dilation that will determine BSparl's method of arrival, and I'm really nervous about it.  I'm nervous about vaginal birth or c-section.  Doesn't matter.  Just "giving birth" has my stomach twisty.
  • Or the fact that I'm craving carbs (nasty carbs, like cheeseburgers and chicken nuggets and pastries) and am having a very hard time not caving to these cravings.  I can't have anything even close to a sleeve of Ritz crackers in the house or they will disappear within a day's time.  I'm ravenous for these rotten carbs, and I've crocheted three scarves in efforts to curb the cravings.
  • Or that every time my numbers are out of range, I want to hold her little hands and tell her I'm sorry.
  • Or yesterday, when a perfect Dexcom flatline overnight was shaken by a cheese stick and a cup of decaf tea, leaving me with a blood sugar of 350 mg/dl and on the cusp of a panic attack.  What does this do to my baby?  Is she okay when I'm spending an hour over 300 mg/dl, without much food at all in my system?  Does she hurt when I am chugging water and stressing out but trying to control my emotions because I want her little womb to be serene and calm, not the spin cycle of diabetes chaos that I am so good at tossing her into lately?

Diabetics have healthy babies all the time.  I know this.  I've read this, others have proven this, and I hope to write those words myself in a few weeks.  But honestly, the mental part of pregnancy is more than I was prepared to deal with.  The guilt of every blood sugar and every miscalculation makes my heart ache, and I have found myself praying more in the last seven months than I ever have the thirty years before. 

I want to paint that "rainbows and unicorns" picture for you guys.  I want to make pregnancy seem like it's the most beautiful thing on the planet and even a person with type 1 diabetes can see the nine (ten?!) months through safely.  But as my delivery date draws closer, I'm not sure.  And I'm scared.  And I feel stupid because I have zero control over my emotions these days, leaving plenty of tears in my wake. (I've become a mega-wuss.)

Ugh, downer of a post.  I really can't wait to have the baby, but I know that part of why I want her out is because I believe she'll be safer once she's in the world and outside of me.  I know that Chris and I can take care of her, as parents, and keep her as safe as any other couple who loves their child.  It's the whole "now" process that has me in knots, wondering if I'm taking good care of her now.  I want the absolute best for my daughter, and I feel so guilty because I know that my body creates a challenge in some ways.

Just a few more weeks.  Every test, every infusion set change, every moment of blood work, every doctor's appointment, every time I pay the co-pay or the parking garage fee, every refilled prescription, every new CGM sensor, every curbed craving ... everything.  Everything is worth it if I can get to the end of this and have her out, safely. 

And then she and I will get matching mommy and daughter tattoos - hers a rainbow, and mine a unicorn.

(Note to people who may think I've completely lost my mind:  Kidding about the tattoos.  But I might buy her a t-shirt.)

February 18, 2010

Guest Post: Pilgrimage.

There are some great new diabetes bloggers out there, one of them being Without Envy, a blog written by the father of a little girl with type 1 diabetes.  Steve has offered to write a guest post for SUM today, and I'm happy to share his words with you.

*   *   *

Pilgrimage

Steve from Without EnvyShortly after our eight year old daughter Lia had been moved to the Pediatric Intensive Care Unit late in the evening of December 23, the same day of her diagnosis for type 1 diabetes, the nurse working nightshift came in to check her vitals and IVs and she asked how my wife and I were doing. We told her that it was a bit much to absorb in one afternoon and because she was a nurse working in a children’s intensive care unit she said that she knew what we were going through and offered a meaningful smile. Then she said softly that we’d be just fine. She had a cousin whose son had developed diabetes some indiscriminate time ago at a similarly young age and since then the boy had taken charge of it and was managing very well. Neither of us knew what it meant to take charge of one’s diabetes but we were both tired and mentally worn out from the trials of just getting through that momentous day so we took what little solace we could from her comment and filed it away under kind, but impractical, healthcare reference.

Besides, we were hurt and dismayed and unsettled. We had no idea how this had even happened and had no interest in hearing testimonials about someone who was weeks, months, years down the road in treating their diabetes. Such well-wishing stories of mastery would become important, but not then, not with our daughter lying two feet away connected to tubes and a heart monitor. Nor were we inclined to receive them and similarly good intentions the next morning when the doctor on duty walked in wearing a holiday cartoon tie and a cheerful grin and wished us a Merry Christmas. I looked at him and hated at once his wit, his casualness and the apparent ease with which he was about to address us. Did he not see what I saw? Did he not know what I knew?

I got over him of course, just as I overcame the shock of her diagnosis and the pain and heartbreak of sticking her with needles, and the fear of letting her out of my sight. There was not much future in holding on to these things, for any of us. So we came home and with the instruction we’d received from the diabetes educators the truth behind what the night nurse had spoken of started to make itself clear. We counted carbs and recounted them. We performed the elementary calculations to determine the necessary insulin dosage then we, holders of two bachelor degrees and one masters  between us, had someone else verify it. We administered the shot through the tears and the anguish and watched as our pivotal day from the one prior struggled to become routine.

And in the days that followed it did and we listened to it and we learned and here we are now, ourselves weeks down the road. The tried and tested. Lay experts. Sharing our own testimonies, like pilgrims set out from their home, rucksacks stuffed with provisions, looking for others to witness and share in their stories and them in ours, hoping to uncover proof that you can take charge of this beast and manage well.

It’s not clear to me yet that you can. Perhaps manage and taking charge are too strong of words, an honest mistake made by someone connected only to the peripheral edges of diabetes. Reality most likely rests somewhere in the middle, a habitable settlement between freedom and tyranny. Wherever it lies, I can honestly say of the company we keep, none has been more supportive or understanding or willing to listen than that which we’ve found right here at our own fingertips. For your patience and your courage and care, we are exceptionally grateful.

Diabetes has changed us, no doubt, and when I hear others talk of their lives in terms of before this disease and after, I worry some because our lives before were good. Not good in terms of its flamboyance or abundance, we had none of that. But good in the sense that we ate right, we exercised, we lived life in moderation, and still...

It was a way of life that had we the choice we would not have aggravated, but like any pilgrimage, in words similar to that of my gracious host, it’s not the beginning or end that defines you, it’s the journey.        

See you on the road,

Steve   

*   *   *

Thanks again, Steve!  And if you would like to contribute a guest post (especially around, oh, let's say the end of April, beginning of May ...), please email me at kerri (at) sixuntilme (dot) com.  

February 17, 2010

Billing Errors.

I believe this is what's holding them back from making progress with our bills.Yesterday, the mail arrived.  There were catalogs for clothes (mmmm, can't wait until May!), letters from friends, the crappy bills that keep arriving even though we didn't forward them to our new address, and oh yeah, that one bill from my mail order pharmacy.

For a thousand dollars.

Dated January 30, 2009

So, being the rational and patient woman that I always am, I ripped up the envelope it came in, cursing under my breath like my temperamental buddy, Yosemite Sam.  Punctuated each tear of the paper with "fricka-frakin' insurance bill dagnabit ..."

And then I called the mail order pharmacy company.

"Thank you for calling Byram Health Care.  Your call is important to us."

That was enough to start pushing me a little closer to flipping out, even though it was just a recording.  My call is important?  How important is my business with you?  You're billing me over a YEAR after whatever happened, happened.  After entering my account number and social security number and date of birth and favorite color and pressing "pound, star, pound" to confirm that yes, John was indeed my favorite Beatle, I finally got a human being on the phone.

The woman who answered was very nice, and it's not her problem that I was receiving a bill for something from January of LAST YEAR.  So I was as patient as I could be.

"I just received a bill, dated January 30th, 2009, stating that I owe over a thousand dollars for pump supplies.  Can you help me solve this problem?"

She put my information into the system and pulled up my record.  After a quick discussion about the invoice number, she launched into a speech that sounded so well-rehearsed, it scared me.

"This claim was under review as of June 2009, but spans the course of the entire calendar year for 2009.  It has just come out of review and is now being billed to you, as you see there on your invoice.  Your insurance company has denied this claim stating that these diabetes supplies aren't covered under your DME clause and therefore you are responsible for the remaining balance for these insulin pump reservoirs.  In the event that you disagree with this statement, you'll need to contact your insurer and have them contact us to resubmit the claim."

"Oh hell yes, I disagree.  So I need to call the insurance company and pass the buck back to them?"

"Yes.  Have them contact us with their resubmission of the claim."

"Okay, but confirm this for me - this isn't my problem.  This is an issue between you guys and the insurer, right?"

"That is most likely the case, but you'll need to talk to your insurer."

So I called Oxford Health.  And their guy told me that Byram had submitted the claim to Oxford with incorrect billing codes, forcing Oxford to deny the claims for these supplies.

"Even though you guys approved these items for over three years?  And it's not like anything changed?  So it's just the billing code that was different, and that's not even my fault, yet I'm receiving the bill?"

The guy from Oxford confirmed.  "You need to call Byram back and tell them that they need to resubmit the bills to us with this billing code (and he read off some series of numbers to me, that I feverishly wrote down and then promptly doodled cats around - I was fired up, but still easily amused), and then that should start fixing this problem."

"Okay, so let me confirm.  This isn't my fault.  Or my problem.  I'm not on anyone's 'bad list,' and this is an issue with you guys and the mail order pharmacy, right?"

"That's correct, Mrs. Sparling."

"Fantastic.  You've been very nice.  I hope we never have to speak again."

And then I called the customer care center at Byram, one more time.  And this is where I almost got into my car and drove to wherever Byram is located, so I could just find this girl who answered the phone and shove broccoli spears up her stupid nose.

After explaining the basics, and after this new girl brought up my account, I said the following:  "This bill I'm looking at isn't really my problem.  That's been made clear to me by speaking with your associate and then the rep at Oxford.  So can you help me out with this billing issue?  I've been told it's a matter of coding, and not an actual insurance denial?"

And this girl actually said this to me.  "Um, so you want me to resubmit this with a new code?"  Big, big sigh.  "I have to resubmit these to your insurance company?  That's going to take a long time."

I snapped.  BSparl kicked indignantly, egging me on.  "You are upset because you have to resubmit the bill because YOU guys screwed up the billing codes in the first place?  You are giving me attitude - you are really out of line with that, by the way - because you have to do your job, only correctly this time?  Honestly?  I'm looking at a bill for $1000 that is the result of a billing code error, not my error.  And the billing codes are from your side of things.  So this is your error.  I am not paying this bill just so you can avoid doing your job.  Right?  I mean, you have to see where I'm coming from."

Big sigh again.  "I'll have to spend tomorrow resubmitting your claims.  You'll need to call back tomorrow."

"That's it?  So you're on this?  And again, this isn't my problem, right?  I don't need to do anything?"

"No.  You don't need to do aaaaaanything."  Drawing out the A-sound, like I was the one not doing my job.

"Great.  Thank you very much for resubmitting those.  And hopefully tomorrow we'll be all set."  

Co-pays are one thing.  Insurance premiums are another.  But being billed a thousand dollars because someone entered the wrong code and now is griping about fixing the error?  That's a surefire way to piss off a pregnant lady. ;)

February 15, 2010

Disclosure: I've Got One.

Disclosure is the responsibility of the blogger, and we’re under more scrutiny these days than ever before.   But I’ve never had an issue with transparency here – actually, I think I tell you guys way more than you probably want to know.  You knew when I started and stopped working for dLife, you know what publications I’m contributing to regularly, and you know about my relationship with Dexcom.  This blog is about my life with diabetes, and even though I know this is my life that I’ve decided to share, it’s important to me that people know my professional relationships with diabetes companies.  I’d want to know that information if I were reading this blog, too.

So (long winded intro to this post, eh?), I wanted to continue to keep you guys in the loop.  I’ve decided to sign a sponsorship agreement with the Animas Corporation. This whole thing started a few months ago, when I was exploring the idea of a new insulin pump and was excited about the Animas/Dexcom integration (no, I don’t have a CLUE when that’s happening, but I’m mighty hopeful it does go through in 2010).  But I’m still under my current pump warranty, so my hands were tied.  Reps from Animas reached out, one thing lead to another, and now I’m working with Animas, not as an employee, but as part of their outreach program that includes country singer George Canyon, LPGA Golfers Kelli Kuehne and Michelle McGann, and former Miss America Nicole Johnson (to name a few).  The program tries to spread the Animas name by working with people who have diabetes who are doing cool things (pregnancy is cool, right?), can inspire others to consider pump therapy, and want to talk honestly about how diabetes impacts their lives.  Bless their hearts for daring to partner with a – gasp! - blogger.  As part of this program, I’ve switched insulin pumps from my Minimed 722 to an Animas OneTouch Ping and am receiving my pump and pump supplies from the company gratis.  (Don’t worry, my doctor is in the loop and my supplies and pump are still a prescribed item.  This agreement doesn’t replace my medical team – just my method of insulin delivery.)

My new insuiln pump.  With my new, mega-basal rates.  Holy pregnancy!
My new insulin pump, showcasing my new mega-basal rates.  :)

This agreement is similar to the Dexcom one from last year (which is still in effect), in that I’m still going to be business as usual here on SUM.  Like with Dexcom, during the course of drafting this agreement, I spoke at length with many of the folks at Animas and they're well aware that everything I write about won't always be favorable (nothing is perfect, and we’re still talking about needles and diseases here), but what I say about their product will always be honest.  That means that when the pump is behaving itself and working smoothly, I'll say that.  And when I’m frustrated by pump fashion challenges and tangled infusion sets, I’ll say that, too.  This agreement isn’t a filter, but I think it’s important that you, as readers who trust me to be straightforward and honest at all times, know what kind of lens my perspective is seen through.  Just like with anything else.  Like when I tell you that Buried is the greatest film EVER.  (It is.)  Or that my baby is the cutest fetus EVER.  (She does make me smile.)  Or that my cats are the most annoying animals ever.  (I can't stand that gray one.) 

Every blogger is biased, but not every blogger discloses their biases.  I’m trying to do right by you guys, as best I can.

So that’s the latest.  As always, if you have concerns about this, please let me know.  I’m happy to answer any questions (but, just like before, my answer might be “Honestly, I have no idea.”).  And, just like before, if Nikon calls, I’m answering without hesitation. 

February 12, 2010

Diabetic Mommy.

I opened this gift that arrived in the mail, and almost burst into tears because I hope, hope, hope this is the case for my daughter.

Thank you, Lindsay!  For making me feel like I'm going to be a good "diabetic mommy."
(This photo is also part of today's Diabetes 365)

I was thinking about how much planning and effort has gone into this pregnancy, from a diabetes perspective - never mind the regular gearing up that parents-in-training go through.  Chris and I have worked very hard, as a team, to manage my diabetes in efforts to get pregnant, and now that BSparl is in there baking cookies (or whatever it is she does all day), diabetes focus has turned up even higher in our household.

I'm blowing through test strips like a champ, wearing the Dexcom to help me keep track of the constantly-changing numbers, using an insulin pump, trying hard to eat healthy (even though I'm currently weighing the pros and cons of a red velvet cheesecake - recipe link courtesy of my friend Elizabeth Arnold), and making feeble attempts to get a workout in here and there.  Managing diabetes has become, seriously, a full-time job as my pregnancy rockets into the third trimester.

But I wonder what she'll think when she arrives.  And how much things will change.  Will she understand when I need to eat before she does, sometimes?  Will she feel upset if I need a few minutes to get myself together before I'm able to play with her?  Will she think I'm cramping her diaper bag style if I shove my meter in there, alongside her wipes and her binky?  Will she wonder what's wrong with my priorities when I refuse to share my juice box with her on our future playground dates?

Will she understand that even though that t-shirt will only fit her for a few weeks and she may not even remember it, but will she know that her diabetic mommy loves her, and has loved her since the moment she knew she carried her?

(And will she forgive her for all the third-person dialog?  Maybe not.)

I'm heading to Joslin again today, for the first of my four seven-months-pregnant appointments.  Chris and I will see our baby girl through the magic of ultrasounds, and then I'll meet with my endocrinologist to discuss how my body is soaking up insulin like a sponge.  Just a few more months until she's here, in our house, in our arms.

Baby girl, I hope you know how loved you are.

(This is part of a gift from my friend Lindsay, who I've never actually met in person, but I feel like I know, though emails and Facebook and blogging.  Thank you again, Lindsay, for such a thoughtful gift!  BSparl says thanks, too, only I can't really hear here because she's muffled by my enormous uterus.  And potentially the sound of the oven *ding* as her cookies bake.  Who knows?)

February 04, 2010

What Defines Our Community?

What defines our diabetes community? 

At the Smithsonian, there is an exhibit called "Portraiture Now: Communities."  It's described with the following (edited) language:

"How do we define community today? Through new electronic networking, our connections with family, friends and acquaintances are increasingly widespread. And yet, we are still drawn to the idea of small communities and face-to-face interaction. Each of the three painters selected for “Portraiture Now: Communities” has explored this idea through a series of related portraits of friends, townspeople, or families. ... Seen together, the paintings by these three artists suggest the enduring power of personal communities."

I can't remember how I stumbled upon this exhibit, but the idea of it really moved me.  "Community" used to be defined by who lived in your zip code, or who went to your school district, or just what faces passed you in the hallway at work every day.  Back when I was a little peanut, my community was my family (there are a lot of us), my school friends, and my fellow tap dancers from Miss Jeanne's dance class.

Since second grade, I've always been part of the diabetes community.  Back in those days, there weren't many tell-tale tubings sticking out from underneath someone's t-shirt, and kids didn't test as often or as openly in the classroom.  But when another child in my school district was diagnosed, an instant bond formed between he and I, and between my parents and his.  Even if we hadn't met yet.  I had a sparse but crucial community of other Rhode Islander children with diabetes, and when I attended Clara Barton Camp in the summers, my community of "other kids who got it" expanded by leaps and bounds. 

But I grew up, and in those foggy years between 9th grade and my first job out of college, I was alone.  Alone with diabetes, yet still part of the diabetes community.  No one knew I was there, but just hearing someone at school mention "their cousin who has type 1" or "That lady they were waiting on at the restaurant who freaked out when the diet soda was switched - she said she had diabetes," made me feel like I was instantly connected to these imperfect strangers.  

And then I found you guys, drawn in by a desire to not feel alone anymore and wanting to share, out loud, the emotional burden of diabetes that I carried for a very long time by myself.  A whole community of people who were either living with diabetes themselves, or loving someone who lived with it, and who understood exactly what I meant when I said, "It's just ... ugh, you know?"

What defines our diabetes community?  Is it the common thread of syringes and infusion sets and the pile of test strips we leave in our wake?  Is it the shared fear of complications?  The universal celebration of a lowered A1C?  The muttering of "Lows are The Suck," and hearing, "I know what you mean," in return? 


I thought about what a "Portraiture" of the diabetes community would look like.  I pictured all those photographs so many of us have taken over the last few years, the ones that show a bunch of grinning people with their arms around one another.  It's only if you look really closely that you notice the pumps clipped to pants pockets or calloused fingertips.  

"Through new electronic networking, our connections with family, friends and acquaintances are increasingly widespread. And yet, we are still drawn to the idea of small communities and face-to-face interaction." 

Face-to-face interaction is such a huge part of feeling like a community, but it's not the only thing that makes us one.  Whether you want to be part of the diabetes community or whether you are rebelling against the very thought, the fact remains that it's there for you, and will always be there for you.  There's a certain comfort to knowing you aren't isolated or alone.  There are people who understand.  

The definition of our community is found in the people who are part of it.  Each and every one of us:  the bloggers, the lurkers, the medical professionals who care for us, the parents of kids with diabetes, the kids with diabetes who have grown up to become parents themselves, the lovers, boyfriends, girlfriends, spouses, friends of diabetics, the immediate family members and the ones who are slightly removed, the employers, the employees, the strangers who help us get juice when we can't help ourselves, the friends, Romans, and countrymen of the diabetics ARE the diabetes community. 

It's a far-reaching group of people who share more than just a busted pancreas.  

It's a true community of people who understand, despite different backgrounds and preferences and opinions.  We're in this together, and as I'm preparing to bring my daughter into this community as a "child of a person with diabetes," I'm thankful that she can find support as a caregiver in this sea of people who have been instrumental in helping me achieve the strength to bring her into this world.

February 03, 2010

We Can Work It Out.

The Dexcom seems fit enough.  I need to get my yellow legs in gear.(Great song.)

Now that we're back from our trip, it's time to reintroduce myself to the "swing of things."  While we were away, Chris and I were up late, eating fancy food at fancy restaurants (including desserts and carb-fantastic sweet potato french fries and gelato ... things we wouldn't normally eat but we devoured in spades - and in our mouths - all week long during the festival holy run on sentence), going to bed at 3:30 in the morning, battling the frigging hills, and waking up the next day only to do it again.  For nine days running.

It was exhausting. 

But now we are home.  And in the comfort of my own schedule, I can wake up early, eat a breakfast that doesn't include sausage (not the cat), get enough sleep at night, put my feet up as necessary, and get some exercise in.

Oh, the exercise part.  How you plague me.

I used to be awesome at getting to the gym.  Not to toot my own horn - more to toot Chris's, actually - but his dedication to the gym helped me keep my proverbial (and literal) butt in gear.  It was just part of our routine, and it was easy.  And the benefits were tremendous:  good health, pants that fit, and that feeling of "ooh, I'm sort of strongish."

But now?  As the baby belly grows and my sense of balance leaves the building for the next 75 days?  Exercise is hard.  Wicked hard.

Since we've been home, I've been back at the gym with Chris, only the workouts I'm doing now feel completely lazy-ass, compared to the ones I was doing before.  No weights (thank you, retinopathy), no jumping rope (thank you, bouncy belly), and no increased heart rate over 130.  

So I walk.  For like 40 minutes on the treadmill, without an incline and at a speed of only 3.0 miles per hour.  On paper (screen?) that looks wussy, but in reality, it's kicking my behind.  I'm not sure if it's the weight I've put on in the front or the fact that my lungs are squished in there, or maybe just because my whole body is completely different now than it was seven months ago, but just walking on the treadmill is a challenge these days.

I'm going to see how long I can keep exercising.  I've heard that many pregnant women make it to the day before they give birth, and I've also heard that the more active I can remain, the better my recovery will be after having the little baby.  Activity helps keep BSparl healthier, too, which is even more incentive to keep plodding.

Weird thing is, my blood sugars don't drop during exercise anymore.  In fact, they seem to go up a little bit.  Before becoming pregnant, I would disconnect my pump and exercise without insulin, but now I need to leave it attached.  And I sometimes need to bolus during the workout, depending on how the Dexcom is trending.  It's very odd, what my hormones are doing to my blood sugars these days.  I also had to increase part of my wee hours of the morning basal today, after two mornings in a row of waking up at 150 mg/dl.

"Kerri, you're rambling.  You realize that, right?  You're just rambling on about exercise and blood sugars and do you actually have a point with this post?"

Why thank you, Internal Motivational Speaker.  I appreciate you bothering me.  Yes, I'm rambling, but I'm just trying to get all these thoughts out before I lose them.  Which seems to be the case lately.

"Why don't you just tell them that the real reason you're fixated on exercise this week is because when you came home from Sundance, each cat had gained 5 pounds?  Now you have a trio of porkchops racing around the apartment?  Why don't you admit that Siah can't even fit under the couch anymore because she's too darn fat?"

Sigh.  I need to get back into the exercise groove. 

And apparently so do my cats.

February 02, 2010

BSparl: She Likes to Make Me Work.

Park City is an old mining town nestled among the Wasatch Range of the Rocky Mountains, and aside from buzzing with Sundance excitement and brimming with film-goers and celebrities, let me just say that the damn place is not flat.  Not even close to flat.  (See also:  built amongst the mountains)  The majority of the "stuff to do" is on Main Street, and I'm pretty sure that street is a 60 degree angle.

BSparl and her mommy (me), in all their frontal weight gain glory, were not amused.

Something about walking up and down (and usually up and down a few more times) that street had me more winded than if I'd tried to run a mile on the treadmill at a 6.0 incline.  I know that the air is thinner in that part of the country, being so freaking high above sea level, and I also know that having a little baby girl growing inside of me is compromising the room for my lungs to expand.  But I had not anticipated how hard it was going to be just to WALK around in Park City.  We'd take the bus from our condo down by the Yarrow Hotel and get dropped off at the city transit center, and then the huffing and puffing would begin.

We have HOW many more steps to go??

"I'm ... sorry ... for ... not ... keeping up."  I'd pant with each step as I tried to keep up with Chris.

"It's okay, baby.  We'll go slow.  We're not in any rush."

"Awe ... some.  Hang on while I lean against this lightpole for a minute ... and let my lungs ... do stuff."

(Thing was, we were late for two different dinner appointments because I couldn't catch my breath about 15 minutes into the walk.  I've never felt more awkward, or more yeti-like, than I did trying to plod up Main Street.)

Overall, little BSparl was a well-behaved fetus, doing her job of kicking and sleeping and rolling around in there.  I'm officially sporting a major baby belly, complete with visible baby movements even through my shirts.  And thankfully, my basals didn't need any adjusting while we were away.  I don't know if it was the time change or all the walking around or maybe it was just the grace of the diabetes gods, cutting me some freaking slack for the week, but my numbers ran relatively stable while we were away.  (Save for that f'ing 300 that came up as a result of overtreating two 48 mg/dl's in a row, pissing me off royally and causing me to have to skip dinner one night.)  I changed my infusion sets every three days like clockwork - mainly because I'm now using about 50u of insulin a day and that's the shelflife of one pump cartridge and also because sets left in too long are starting to get infected faster than usual - and I tested about 18 times a day.  In addition to Dexcom'ing. 

I may have left a trail of test strips on that there Main Street.

BSparl is proud of her daddy.  When I was trying to coax her into kicking at times, all it would take is a quick "Hi baby!" from Chris to get her scooting around in there.  And during the five screenings of Buried, she danced in celebration for her father's success.  I believe I may be building a "daddy's little girl" in there, and I think they're respectively smitten with one another. 

A sculpture on Main Street in Park City, Utah

Traveling at almost seven months pregnant was definitely a challenge, and I'm not sure I would have done it, were it not such a big freaking deal to go to Sundance.  Heparin before the plane ride was one thing (that shit stings going in, FYI), and not being able to lift my suitcase wasn't exactly heartbreaking, but moving around was a little awkward.  And having to pee every 30 minutes was also cumbersome.  (I know where EVERY bathroom is in Park City.  Thank you, BSparl, for making my bladder your pillow all week long.) 

But I wouldn't have missed this for the world.

February 01, 2010

Sundance: The Festival Itself.

(I've bombarded you guys with info on Buried and kept a running update on Facebook and Twitter, so I promise this will be the last post about Sundance. I'll go back to diabetes crap in a few minutes.  Or at least I'll blend them.)

We're back from Park City, and the whole Sundance experience was completely and utterly surreal.  I won't go on about the reviews that have come out about the film (i.e. New York Times, LA Times, Variety, Moveline, Slashfilm, Film School Rejects), and I have no plans to talk extensively about the Lionsgate purchase (holy crap).  But we were at the premiere of Buried at the Library Theater on Saturday, January 24th, and it was incredible.

After a private pre-screening dinner (where there was a special "Buried" menu on tap - very cool), we headed off to the theater for the actual screening.  The film premiered at midnight, and it was something else.  Chris's (in my humble, wife-ish opinion) fantastic script was brought to life by Rodrigo's immense directorial talent, and Ryan's performance was emotional and real.  I don't want to ruin the story for anyone who is planning to see the movie (you are ALL planning to see the movie, right?), so suffice to say that the film was incredible.  I applauded wildly, and BSparl did the same from underneath my belly button.  (She's a big fan of her daddy's movie.  Man, that is bizarre to write.  Two and a half more months!  /diatribe)

So many friends and family members came out for the festival (including the majority of Chris's extended family and also my father), so the house was packed.  Chris, director Rodrigo Cortes, and star of the film, Ryan Reynolds were all in attendance, adding some extra excitement to the room.  This was the first time that anyone outside of the production team was seeing the film, so the air was electric.  And since this was our first look at the finished film, we could hardly sit still.  I found myself particularly fidgety during certain moments of the movie - you'll know when you see it.

Chris Sparling, Rodrigo Cortes, Ryan Reynolds
Writer Chris Sparling, director Rodrigo Cortes, and actor Ryan Reynolds

And it was over.  Ninety four breathless minutes later.  The audience sat back from the edges of their seats - literally - and then there was a Q&A with Ryan, Rodrigo, and Chris, where the audience peppered the trio with questions about the film. (Some video coming soon, once we figure out which suitcase the Flip ended up in.)

Buried screened a total of five times at the festival, and the responses from viewers has been overwhelmingly positive.  I mean, these three guys pulled it off.  A movie, taking place entirely in a coffin with one actor, was interesting.  For over an hour and a half.  That's pretty damn impressive.  ... but I'm not doing a movie review here.  Obviously my bias is impossible to contain. ("Most impressive script EVER!"  "Cutest writer of all TIME!!"  "Framing the movie poster and debating putting it in the baby's NURSERY!") 

I am so proud, as his wife, to have been there to support Chris as he made this huge career leap forward.  But I was proud before, when there wasn't a Sundance movie to talk about or a movie premiere to attend.  He's my best friend, and I'm so, so happy for him.

Now I need to upload a pile of photos and make sense of the suitcases that still need unpacking.  And find out why Siah is curled up around the toaster, purring maniacally.

January 25, 2010

What's Sexier Than Compression Stockings?

Thanks to the happy combination of Factor V Leiden and being pregnant, I'm rocking a higher chance than average for a blood clot while traveling.  Back in October, when I was just a few months along, a lot of my travel was on the Acela, cruising back and forth between Boston and Philly, in addition to some flights.  So I needed to take these clotting risks into account.

"You're telling me I should pick up some compression stockings, then?"  I asked my obstetrician, after we had discussed my upcoming travel plans.

Compression stockings are cool ... right?  :p

"Yes ma'am.  And wear them.  Not just for traveling, but as often as you can."

"Will do.  So I'll be potbellied and wearing compression stockings.  Hot!"

My feeble attempts at joking aside, these stockings are important.  Even though I'm working hard to get to the gym several times a week, I'm more definitively working hard on making money, so there's a bit too much time spent at the computer these days.  Heeding the advice of my doctors, I'm careful to keep my legs elevated as much as possible, and I'm sure to pop up and walk around every hour or so, in addition to staying hydrated.  (Note:  Staying hydrated makes getting up every hour easier, especially when BSparl is gnawing on my bladder.)  

And I'm also sporting these socks, purchased for $4.99 at my local CVS.  (Another note:  CVS takes too much of my money on a regular basis, from their clever selection of lip glosses - love me some Bonnie Bell - to their strategic arrangement of Hallmark greeting cards to their convenient pharmacy that's open 24 hours.  I have an intense love/hate relationship with CVS, as evidenced by their constant contact with my debit card.)  The socks aren't uncomfortable, they appear to be working well (no varicose veins yet), and they are black, so thankfully they go with my go-to flats of choice these days.  I'm safe, BSparl is safe, and CVS is safe because they will continue to get my money.

So what's sexier than compression stockings?

Nothing.

Because without these blasted old lady leg warmers, I'd be risking a blood clot and varicose veins, thank you very much.

January 22, 2010

Looking Back: Rage Bolus, Anyone?

Today, we're traveling to Utah for the Sundance Film Festival.  And yes, I will be photographing and videoing the hell out of the festival, because I am so excited to see how this week plays out for my husband.  But in the meantime, as I board the plane and head off to Park City, I'm looking back to this post from October 2005, where the term "rage bolus" first appeared on SUM

(It made me laugh to read this post, because this was pre-dLife, pre-Chris and I getting married, and pre-so much stuff that's in play right now that I almost forgot that I hated my job back when I lived in RI.  And how much I still want to know how many licks it takes to get to the center of a Tootsie Roll pop.)

*   *   *

October 10, 2005:  Bit of a rantish post here. And there's no reason for this other than to vent frustration.

Last night, after I came home from the U2 show in Boston (more on that later), I was a little bit high. Rang in at 212 mg/dl. Okay, no problem. Bolus it up, go to bed. Woke up this morning at 200 mg/dl. Hmmm, no drop in the blood sugar levels. Not to worry, though, because it's a Free Shower - no infusion set - Day due to the fact that it's time to change the infusion set. Primed and inserted a new set with good ol' Charlene. She purred (beeped?) happily and I set about dressing for work.

RAGE BOLUS!!

Arrived at work. Hungry. Devoured one of those sometimes-delicious-but-most-often-just-gritty Kashi Whole Grain Granola bars. Bolused two units to cover, in accordance with the 1:10 ratio. Worked at my boring job for about an hour before realizing that I had already visited the bathroom twice in that time. Hmmm. Not normal. Tested, revealing 281 mg/dl. Whaaaa... I corrected this morning. I bolused for the crappy snack. And now I'm higher than before? Frustrated Kerri. So I Rage Bolus*. I just crank the shit out the pump, knowing full well that I only need about two units to come back down. I lace in 3.5 units. Sit back, satisfied.

Not done yet. I test again, an hour and half later, clocking in at 286 mg/dl. Fan-freaking-tastic. Good thing all that insulin made me higher. Because that makes f-ing sense. So I Rage Bolus again, sending 2 more units coursing through, Frustrated Kerri not really giving a shit that the "active insulin" tally on my pump is enough to cover dinner at Olive Garden.

So it's noon. I've been high all morning. I just changed my infusion set this morning. And I'm angry. I do not want to pull this set only to find that it's perfectly fine and I've wasted yet another expensive pump supply.

I'm riding this out. It's Me against the D. Who will persevere? How high will Kerri allow herself to rise before she pulls the set and starts over? How much Rage Bolusing will eventually catch up with Herself before Kerri bottoms out at 44 mg/dl? How many licks does it indeed take to reach the center of a Tootsie Roll Tootsie Pop? If you say three, you and that f-ing owl can go screw. It at least takes 125. I'm going to find out as soon as my Rage Bolusing catches up with me and I'm Trick or Treating at people's desks here at work.

*Rage Bolusing: Taking an uncalculated amount of insulin to correct a frustrating high bloodsugar reading. Also see: Panic Eating.

January 17, 2010

BSparl Fights Back.

Last Friday, Chris and I were back up at the hospital for another round of doctor's appointments to spy on Ms. BSparl.  (This might be another long post, because I'm trying to include everything we're doing for this pregnancy, just in case someone else is looking for this info.  So thanks for bearing with me!)

Fetal Echocardiogram No. 2:  We started with a follow-up echocardiogram appointment at Children's Hospital in Boston, because last time we tried to see the structures of our little girl's heart, she was hiding out too low in her little uterine apartment to be properly found. This time, a full month later, she's over a pound and a half, and the size of an eggplant.  So hiding is a little harder.

The babies of type 1 diabetics aren't prone to every kind of complication, but are instead screened for everything under the sun, just to make sure.  The ultrasound technicians were looking for problems with BSparl's heart - ranging from a floppy valve to flow problems between the atria and ventricles, checking out the umbilical cord blood flow, too.  

"She not much of a cooperator, is she?"  the technician asked, pressing the ultrasound wand firmly against the left side of my uterus. 

"I guess not.  Bit of a shy one." 

(I love this kid already!! /sidenote)

"Well she can run, but she can't hide.  We're going to get these pictures today, whether she likes it or not."

The technician visually isolated BSparl's beating heart, looking at every chamber and pulse to make sure she was in one piece.  But as the technician worked to get the ultrasound images she needed, she was pressing pretty damn hard against me ... and against BSparl.

"Almost done.  Just one more image to capture.  You doing okay, Kerri?"

"No problem.  But I think our friend here is ... ooof!  Um, she's not very happy with you."

And when I looked down, I could see the baby kicking and fussing on my right side as the technician pressed the wand against my left.  Big kicks, clearly visible to Chris, who was sitting in a chair on my left.  BSparl was pissed - she didn't enjoy being bothered while she was trying to sleep during the day, apparently.

'Fiesty one, eh?"

I felt a little proud.

"Yes, she is."

(I guess if you poke at my kid, she fights back.  I like that.) 

The fetal echocardiogram came back without any red flags, so thankfully her little heart seems to be okay in there. 

Some orange flowers.  Not diabetes-related, but I thought they'd break up this long, boring post a bit.

OB/GYN: 
After that appointment, we had a quick visit with my OB/GYN who took some measurements of BSparl to see how big she's getting in there.

"Looks like she's about one pound, 12 oz.  She's right on track, so nothing to worry about with her size at this point."

I was relieved.  "I'm glad you're saying that, because I've had some really tough blood sugars these past 2 1/2 weeks.  I was afraid she was beefing up in there."

"No, she's in the 61st percentile, and we aren't going to worry about anything until she's in the 75th.  We're going to watch you to make sure she doesn't get too, too big in there, but at this point, she's doing just fine.  And so are you."

She printed some ultrasound photos for us (which will go into the baby scrapbook I've started but definitely need to catch up on) and then I met with my endocrinologist about my blood sugars.

Endocrinologist:  I am very, very thankful that I have a comfortable relationship with my endocrinologist, because the emotional toll of diabetes has really affected my ability enjoy being pregnant.  I've had some highs that wouldn't go away, and plenty of unexplained blood sugars that have made me feel so frustrated over the last few weeks.  I'm pretty sure my A1C will be up again this month (hopefully still under 6.5%) but I needed help fixing some of it.  And I also needed to be told that what's happening to me is normal.

"I'm high.  Like, crazy high, sometimes first thing in the morning.  And other times, I can't make my post-prandials come down under 160 mg/dl for at least two hours, no matter what I do.  Is this normal?  Is it normal for me to be experiencing such wild insulin increases at this point?  And is it normal for me to be sort of losing my mind at this part in the pregnancy, too?"

She assured me that this is the point in pregnancy when the placenta does, in fact, produce anti-insulin hormones, causing my numbers to elevates and my need for more insulin.  

"Anti-insulin hormones?  That's cruel.  Cruel irony."

She smiled as she worked to adjust my basal rates (now up to almost 20 full units of Humalog per day, in addition to bumping my insulin to carb ratio down to 1:8).  

"You're doing fine.  And you've been adjusting your own basals and going after these highs, so that's the right thing to do.  We just don't want you chasing.  I want to help prevent them in the first place."

I could have hugged her.

"Me, too.  I want to make sure she's safe in there.  I don't want to hurt her in any way, and the recent highs have me freaking out a lot."

"Don't freak out.  Just keep doing what you're doing.  Follow those numbers, stay as controlled as you can, and fax me any blood sugars that have you concerned.  I can review the changes you're making, or I can make changes for you from here.  Either way, we'll get her out just fine."

Building this baby is tough work, and these days, I feel like a full-time diabetic.  This baby, and by default, diabetes management, is my top priority and I am focused on keeping her as safe as I can.  But as my body changes and my insulin needs become less and less predictable, it's getting tougher to stay in good control.  And in solid spirits.

We're almost at the end of the second trimester.  Third trimester starts on February 8th, and after that, it's a fast track towards her arrival.  This is happening really fast.  We actually started registering for baby stuff this past weekend - holy crap.  Emotionally, I'm overwhelmed and excited and scared and trying to figure out how to just slow things down for even a day.

(More on that tomorrow, once I wrap my head around the whole concept.  For now, I need to go make some pancakes.)

January 08, 2010

BSparl: She's a Mobile Biscuit.

We're just over 23 1/2 weeks with Ms. BSparl, and she's an active little biscuit in there.  I know I mentioned it in my vlog earlier this week, but this baby is scooting around all over the place inside of me.  Last night, for the first time, Chris and I could actually SEE her kicking from the outside.  Feeling her kick is one thing, but seeing it?  Completely amazing.  When she shuttles and rolls from one side of my uterus to the other, I can see her moving.  My belly swells more on one side, and then I can feel and see the 'bulge' move over to the other side.  (I'm trying to get a video of her doing this, but usually when it happens, I'm too taken by surprised to grab the Flip!)

Baby Girl Sparling, 23 weeks along

On the diabetes front, my insulin resistance is climbing.  Daily.  Like a cat in a tree, howling from the top branch and refusing to come down.  (I need the fire department - stat!)  My basals, once at a conservative 12.4u today per day, are at an even 20u per day and I'm sure they'll need to be upped again sometime next week.  I feel like I'm chasing my tail right now with these blood sugars, but so long as I can continue to effectively stalk them, I'm confident that I'm not boiling BSparl.  This morning, after three days of waking up at 140, 155, and 203 (gah), respectively, my fasting number was 79 mg/dl and the Dexcom reflected a steady overnight, too. I'll take that, and hope it happens again tomorrow. 

But if it doesn't?  CRANK it up again!

A big hurdle I'm encountering is the exercise bit.  Honestly, I haven't had a good workout since before we went to Spain (and returned with Ms. BSparl).  In the first trimester, I was usually too exhausted to get to the gym (went three times a week instead of the five I was getting in before), and then we moved out of our apartment in Connecticut, so that whole transition sucked out my desire to work out almost entirely. 

Now, well into the second trimester, I'm trying to get to the gym but it's just so boring.  My exercise options feel so limited, and I'm not used to the whole "get on the treadmill, walk steadily for 35 minutes, END" routine.  No ab workouts, or I could smoosh BSparl.  No jumping rope, or all these new sticky-outtie parts of my body might leap off of me and my pelvic floor could be weaked.  (Kidding on the body parts leaping off but true on the pelvic floor concerns. I also can't imagine jumping rope being almost 6 months pregnant, nevermind the fact that the kid won't like it.)  And no strenuous weight lifting, thanks to compromised diabetic eyes. Those little five pound weights I have are borderline questionable, considering my retinopathy progression.  Booooooo.

So the treadmill it is, for long and awkward ambling.  (For now.)  And even though it's a whole lot of boring (I've watched that "build a six foot gingerbread house in 8 hours" challenge on the food network like seven times now), it is getting harder and harder to keep moving.  With BSparl expanding every week, my organs are getting a little smushed in there.  An expanding uterus puts pressure on my bladder, my diaphragm, and every other organ I have in there, leaving me short of breath a lot of the time and generally feeling like I'm going to tip over a little bit.  I guess these walking workouts are still exercise, even though they aren't even close to what I was doing before BSparl's creation.  

Every week is different, but I'm definitely not complaining.  Pretty damn grateful, actually.  I'm so happy to look in the mirror and see that my waistline has all but disappeared and has been replaced by this bump o' BSparl.  She's in there, she's doing well, and in just about four months, she'll be here.  

January 04, 2010

Oh, High!

I hope BSparl is going okay in there.Back at the Diabetes 2.0 conference in Florida in November, I was talking to Manny Hernandez about how evenly  my numbers were running due to the pregnancy.

"Dude, it's like a cure.  It's creeping me right out, but I am NOT complaining.  Whatever keeps this baby safest!"

Oh how I wish that was still the case.

The lows chased me all around the house for about five months, helping my A1C drop like a rock and keeping highs out of the rotation for approximately twenty weeks.  A blood sugar of 150 mg/dl felt HIGH (which was a far cry from the 250's I was sadly bonding with this time last year) and my low symptoms weren't kicking in at all (see also:  the 29 mg/dl without a whisper of a hint). 

Tomorrow I'll be in the 23rd week of my pregnancy, and the highs are back.  With a freaking vengeance. 

It started innocently enough - with some spiky numbers in the middle of the night.  Nothing chaotic, but 120's where there were 80's the day before, and they continued to climb a bit every day.  For about four days straight, I was waking up at 4:30 in the morning between 120 - 140 mg/dl, correcting back down to 100 mg/dl, and then the creeping would start again around 10 am.  It was like my body wanted to incubate BSparl at a steady blood sugar of ... 180?  NO WAY. 

After a quick chat with my endocrinologist (who told me, in no uncertain terms:  "Pregnancy is completely different.  Two days is a pattern now.  You know what you're doing - adjust your basals as often as needed."), I starting hiking up my basal rates.  Before I got pregnant, my total daily dosage was around 24u per day, thanks to a low basal rate and a lower-carbohydrate diet.  Now?  Five months and 3 weeks into my pregnancy and 17 lbs heavier?  My TDD is 45u and climbing. 

I am wearing my Dexcom and testing very regularly, but it seems like full-out stalking is necessary for the next four months.  I'm also changing my insulin pump infusion set every three days, like clockwork, to keep absorption issues from adding to the pile of variables.  What's becoming challenging is avoiding basal stacking.  As in, if I'm 140 mg/dl and I bolus it down, I need to be patient and let the insulin do its work.  I can't freak out and take another bolus 35 minutes later just because I'm nervous.  Bolus stacking (and rage bolusing, too) are totally counterproductive when they result in a nasty low blood sugar that leaves me spinning.

So what's the moral of this story?  ... honestly, I have no idea.  All I know is that blood sugar management during pregnancy just went from literal cakewalk (as in, I'd take a step and would require cake to take another step) to a struggle that has me acting like an emotional wreck.  My last A1C came in a little higher than the one the month before (went from 6.1% back up to 6.3%), and I know this is because the lows are tapering.  But I don't want to crest back up towards 7% because I'm unable to wrangle in these stupid highs.  

There's a lot of guilt when it comes to diabetes.  I knew that before.  But what I didn't realize before becoming pregnant is how much I worry about this little baby while she's growing inside of me.  Every time I test and see a number above 130 mg/dl, I feel so sad and frustrated.  My hands immediately go to my belly and I want to feel her kicking, because that at least soothes my heart, knowing she's still okay in there.

Actually, she's rolling around in there as I type this.  My blood sugar is 96 mg/dl and holding, I hope.  I have every confidence that I can do this and that she and I will be okay, but these last few days have been really emotionally tough, and I've found myself praying more now than I ever have before.

(Thank goodness for cute baby girl clip art.)

December 15, 2009

BSparl: 20 Weeks.

Dear Baby,

Daddy and I are at the halfway point in our journey to meeting you, and I'll admit - I'm a little surprised at how quickly this is happening.  I feel like I was just in Spain, hoping you were there with us, and then just at Joslin, wondering if they were going to tell us you were indeed hidden inside of me.

Baby, we know you are a little girl, and that every week, different parts of you progress in their development.  Daddy and I read through those books we bought and marvel at what's actually happening inside, when my outside just looks bulgy.  "She can hear us now!"  "She'll start kicking any day."  "Will we catch her sucking her thumb in the next ultrasound?" "Does she realize I don't know the lyrics to ANY songs, not even Christmas ones?"

Baby Girl Sparling, 20 weeks

And I've felt pretty healthy, Baby.  I am about 13 lbs heavier and wearing maternity clothes now (you'll see them when you're born - the crazy pants with the elastic waist bands that everyone was jealous of at Thanksgiving?), but a lot of the "pregnancy woes" aren't part of our lives yet.  Like heartburn.  And stretch marks (yet).  Just some back pain and I feel pretty tired a lot of the time.  Heating pads and naps work wonders these days. 

But Baby, I get very nervous about things that other people don't know about.  The stuff that isn't mentioned on the "What to Expect" websites.  We visit the doctor every two weeks, and I'm being followed very closely by my medical team, but sometimes my mind gets panicked about how capable my body is of taking the best care of you.  I can't lie - I know that diabetic women have healthy babies all the time, but Baby, when my blood sugars ring in at 200 mg/dl after a meal, no matter how carefully I've counted carbs and bolused insulin, I'm terrified that I'm hurting you.  Or this morning, when I woke up at 135 mg/dl at 7 am, I felt a pit in my stomach because I know that it's best for me to be under 100 mg/dl first thing.   I wonder, when the infusion set really stung yesterday morning upon inserting it, do you feel that pain?  Is it normal to worry about every little thing when it comes to your well-being?

Of course it is, moms and dads who have done this before will tell me.  It's completely normal for me to want the very best for you and to hope and pray for your good health and safety.  And it's also completely normal for me to worry about every little thing.  But what I worry most about are the things I am scared to talk about.  The things like blood sugars and hypertension and diabetes-related complications for you and I alike, that other people in my life think I have figured out but I just don't know how to do it right every day.  And the idea of doing it "wrong" makes my breath catch in my throat.  My numbers seem "good enough" and my A1C is lower than it's ever been, but those 200's that are creeping back in at at times terrify me.  So does the 31 mg/dl in the middle of the night.  And so does every single thing that threatens to affect you in any way.  Will I keep you safe enough? 

Diabetes is the shifting sand I'm trying to build my life on, and I can handle my being affected, but I don't want it to touch you.  Not even for a moment.

I love you endlessly, Baby.  I'm so grateful to even be this far, and I appreciate every moment I have with you, and will have with you in the future.  Don't worry, Baby.  I'm not spending every minute of our pregnancy in a panic.  It's just sometimes I feel so scared that I'm not able to provide to you everything that you deserve.  I'm very protective of you already, and I want to be a good mom to you.  When I feel you kicking around inside of me, I know you are exactly what I've always wanted.  You are a new life that your father and I created together, and I hope that I can give to you even an ounce of the joy you've already given to me in the last five months. 

I can't wait to meet you, and hold you, and know that you're okay.

Love,
Your Mommy

December 06, 2009

Looking Back: The Boy at the Health Fair.

Today, I'm revisiting a post from 2006 (writing that makes me realize I've been blogging for a while now!), when I met a little boy at a Rhode Island JDRF event who warmed my heart - which I needed on this snowy, New England morning. ;)

*   *   *

I'd guess about ten years old.  Spikey blonde hair, pale blue eyes, chubby little kid face.

His mother stopped by the table we were manning at the School Health Fair, mussing with the pamphlets strewn about the blue plastic tablecloth.  The tri-fold cardboard display announced "Juvenile Diabetes Research Foundation" in bright blue letters.  Myself and another volunteer from the RI JDRF stood vigil at the table, handing out trinkets and informational packets, answering questions, and enjoying the sights.

"Hey buddy.  Would you like a t-shirt?"  My fellow volunteer leaned in towards the little blonde boy.

"Sure.  Thanks."  Shy blue eyes.

Turning to the mother, my partner asked, "Does anyone in your family have diabetes?"

She waved a green sweatshirt clad sleeve at her son.  "Yeah!  He does!  He has diabetes."

He looked at the floor and contemplated his untied sneaker. 

His mother laughed loudly and clapped him on the back.  "Some days he talks about it and some days he doesn't.  Today he just ain't talking!"  She picked up an issue of Countdown Magazine and flipped through the pages.Lost in the Crowd

"Here's your t-shirt."  Pale blue eyes met my own.  "I have diabetes, too, you know."

"Really?"

"Yeah.  I have an insulin pump."  I pointed to the pump clipped inside the pocket of my khaki skirt.  "I've had diabetes since I was about six."

"I've had it since I was seven."  He smiled and fingered the plastic sleeve around the blue JDRF bracelet.  "It's okay... so you have it, too."  He looked at all the other volunteers at the other booths. 

After a beat:  " You look just like the rest of them."

I stood there after he and his mother walked away, toting plastic bags filled with health fair goodies and JDRF magnets and pamphlets on bloodsugar management.   His blonde head blended in with those of the other kids until I couldn't find him in the crowd anymore.

He looked just like the rest of them.

November 30, 2009

A Piece of Embarrassment Pie.

Diabetes police - :(Over the last few weeks, I have had a few run-ins with the gentlest of diabetes police - people who don't mean to be second-guessing me or asking me why I'm eating that, but still, they can't help but ask.  Sometimes their questions are subtle and we end up having a quiet, private discussion about what type 1 diabetes means to my life, and I welcome these opportunities as ways to help educate and advocate.

But other times, when I'm at the table with a piece of pie in my hand and about to sink my fork into it, knowing full-well that I am at a very good blood sugar and have bolused for the pie carefully, and someone asks, "Why are you eating that?" ... I feel completely defeated.  And embarrassed.  Can't a girl have dessert without being questioned?  And when questioned, why isn't my explanation good enough to justify my actions? 

I'd like to be a person with diabetes who sits down for dinner and eats with everyone without the scrutiny.

There's a difference, in my eyes, between choosing to be a diabetes advocate and being forced to explain myself.  I have no problem explaining to a stranger what the difference between type 1 and type 2 diabetes is, or what this machine on my hip is, or why my purse keeps BEEEEEEP!ing, or why I'm carrying more candy than an Oompa Loompa.  I actually like having these discussions, because I feel like people are only familiar with one kind of diabetes and one linear explanation for "the sugar," and I like knowing that I'm helping to educate them about the different kinds of diabetes, particularly type 1. 

What I don't enjoy is having someone look at me like I'm doing something wrong, just because they are unfamiliar with the ways that my diabetes needs to be managed (or the way I'm choosing to manage it).  I've written about diabetes and guilt before, and my inability to ever be "the perfect diabetic," so this isn't a new gripe.  But what's made me particularly frustrated is how there seems to be this common misconception that "it's only diabetes" and it's okay to pass judgment on my choices.  Diabetes isn't viewed as a serious disease to those outside the bubble of understanding, and complications for a young person with type 1 can thankfully be hard to spot, so maybe diabetes just looks too easy to some people.  Maybe we are just too good at masking how challenging it can be sometimes.

What would my well-meaning diabetes police say if I responded to their comment of "Whoa!  Having pie?  You can't have pie!" with a dissertation:

"Yes, I can have pie.  If I'm willing to go through the necessary motions, you know?  I have type 1 diabetes, and I wear this pump to give myself the insulin hormone that I don't make for myself anymore.  Supplementing all day long!  Unlike type 2 diabetes, which I know you're more familiar with, I don't make any insulin at all, so every meal is a tight balance of blood sugar monitoring, carbohydrate counting, and then dosing my insulin in accordance with the meal I'm about to eat.  Then, after the meal, I'll keep monitoring to make sure that I'm not going too high or too low.  It's about balance, but not about deprivation.  So yes, I can eat this.  And I will eat this.  And so long as I'm able to keep my numbers in check, my body shouldn't rebel after a piece of pie."

The thing is, I've given this explanation before.  Many times.  And I've explained diabetes to so many family members and so many friends (and just as many complete strangers) that it frustrates me endlessly to see that they aren't retaining any of the information.  And not only are they missing what I'm saying, but they're constantly - albeit gently - calling me out for my actions.  It makes me feel like such a crumb, like everyone is watching me while I eat.  (Nothing like that to make you feel paranoid.  Not to mention pregnancy weight gain, adding insult to injury.)  I know they mean well, and I appreciate their concern, but they need to listen to me when I answer them.  And they need to trust me when I give a clear explanation.  I'm not asking them to explain their food choices or exercise decisions or the details of their daily regimen - it's not my business. 

I'm sorry if I seem frustrated, but the scrutiny is making my head and my heart ache.   I don't have a track record of being irresponsible.  I don't exhibit signs of disease ignorance or depression or unawareness.   I'm taking very good care of myself, especially now with the baby growing inside of me and my focus turned to diabetes the majority of my day.  I'm tuned in.  I'm careful.  I'm doing my best.

Yes, I can have the pie.  Next time, I might skip it for reasons all my own.  But whatever my decision, please don't assume you have a right to question it.  Until you are living with type 1 diabetes, you don't understand.  And I'm not expecting you to understand - ask me what you want to ask me.  I'm more than willing to talk to you about this. 

But if you don't have a question, and you only have those comments, I'm just respectfully asking you to be quiet.   Please.  I've had enough.

November 23, 2009

Diabetes Torture Devices.

Last week, on Twitter, Elizabeth Arnold posted a link to a photo that made my whole body cringe and I instinctively said, "Oh crap, THAT thing?" (I'm stealing and reposting this photo here, but the original photo credit belongs to Cardinal Health.) 

Behold - The Guillotine:

The Guillotine:  Worst Lancing Device EVER

This photo made me shudder because I remember this lancing device clearly.  It was the first one I ever used, outside of having my finger pricked by the nurses with the lancet alone, and I remember the shunk sound it made as it came careening towards my fingertip.  It wasn't the standard shunk we know now - this sucker would have to be cocked back like a rifle, and once it clicked loudly into place, you had to hit that button on the back to release the spring-loaded lancet.  And it wasn't just spring-loaded - The Guillotine had an agenda.  It would come screaming over the top of the curve and embed itself into your fingertip, and it was all my mother could do to keep my hand pressed against that little plastic circle at the bottom there. 

I hated it.  It scared the crap out of me, and even though more humane lancing devices were introduced soon after my diagnosis, The Guillotine lived in our house much longer than I'd care to admit.  Even the lancets looked like little harpoons. 

Back in 1986, diabetes technology wasn't completely archaic (I was dx'd after disposable syringes were used, and way after pumps were the size of backpacks), but it wasn't comfortable in the slightest for a second grader.  That Guillotine still makes me cringe, even 23 years later, and I'm increasingly thankful for every little advancement we've seen over the last two decades.  

Because I mean, really.  Look at that thing.  OUCH!!

November 13, 2009

Pregnancy Progress.

Tomorrow is World Diabetes Day.  While my best friend's baby shower is this weekend and I'll be busy preparing for and helping with that event, I know there are lots of events taking place to celebrate the big, blue circle (including the Big Blue Test ... more on that later).

But today is just another day in diabetes management, and it happens to be another endocrinologist appointment for me and the ol' BSparl.  BSparl is getting bigger, as evidenced here:

BSparl, 15 weeks and 2 days

I am now sporting my first baby bump, and it's becoming more and more pronounced every day.  (Pronounced baaabeee buuuhmp.)  Clothes don't fit, maternity jeans are necessary, and when I zip up my sweatshirt to head down to the gym, the zipper strains a bit over my belly. 

But is it all baby?  Or could it be some weight from treating all these lows?

One of the things I'm talking to my endocrinologist about today is low blood sugar.  Specifically, the crazy-ass low blood sugars I've been experiencing over the last four months.  The other night, I woke up to the BEEEEEEP! of the Dexcom and a pool of sweat in my clavicle.  Blood sugar was 33 mg/dl, and I wasn't even entertained by the Larry Bird reference

Instead, aside from the sweat, I was completely symptom free.  And that scares the hell out of me, because there have been several lows in the last few weeks that clocked in under 50 mg/dl without a single symptom.  Last week, it was a 29 mg/dl that just sprang up on me, and even yesterday I had a 41 mg/dl with my only symptom as thirst.

THIRST?  That is my low symptom now?  Come on, diabetes.  That doesn't even make any sense!!

In preparation for my Joslin appointment today, I have two weeks worth of blood sugars all logged and ready to roll, and as I was printing out the logbooks, I noticed that there isn't a single trend.  These lows are cropping up at 3 am, 10 am, 4 in the afternoon, while I shower, while I'm at the grocery store, during conference calls ... you name it.  No reason for these pesky lows (and also no reason why I shouldn't just buy stock in glucose tabs, seeing as how I've wrecked through a bottle in the last week alone).  Plenty of other type 1 diabetic women who have been pregnant have told me about the epic low blood sugars they've experienced, but I had no idea what they meant until the 20's and 30's started pestering me at all hours of the day.

I have high hopes that my endo can help me peel back some of these lows without sacrificing the excellent post-prandials that I've been working my butt off to achieve.  I'm willing to let my A1C creep up a bit in order to bring my machine average back up into the triple digits.  I just need some help in making these lows stop.

(I also have high hopes that I can stop sleeping with a bottle of honey next to my bed, because when I slap my hand against that instead of the alarm clock, it's all sticky.)

November 12, 2009

Let the Eating ... Begin!

Evil pregnancy cravings.The second trimester (not semester, as I keep mistakenly saying) is in full swing.  According to the baby books I am reading daily, it's time to start putting on 1/2 a pound to a pound a week - oh what a weird concept!!!  For those of you who have been reading me for a few years, you know I work hard to keep the poundage OFF, so the concept of gleefully adding 20lbs in the next 22 weeks is foreign to me.

The weight gain is a weird adjustment.  I log in to the What to Expect (When You're Expecting) site daily to see the progress of the BSparl and because it helps me keep track of how far along I actually am.  I'm now in the 16th week of my pregnancy and the site says the following:

"It's hard to watch yourself gain weight during pregnancy, even when you know there's a wonderful reason for it. The challenge, though, is to try to embrace your body's new shape and think of every pound you put on as a sign of good health for you and your baby. As long as you eat right during pregnancy (minimize junk and maximize nutrient-dense foods) and get regular exercise, you'll be fine in the long run. Remember, every woman is different and gains (and loses) at her own pace."

Eating right has been a little bit of a challenge because what I'm craving is changing hour to hour, it seems.  Earlier in my pregnancy, I could have devoured an entire fruit stand in a week, craving anything with a high volume of vitamin C in it.  Kiwis, orange juice (yes, with pulp!), blackberries, and raspberries by the fistful.  Healthy choices, right?  But now, with about 7 lbs on board already and closing in on the fourth month of BSparl, my tastes are turning towards less ... diabetes friendly options, shall we say.

Like the other night.

"I want a McDonald's cheeseburger, like you read about."  I said this to Chris from the safety of our home, away from the tempting glow of any golden arches. 

"Really??"  He knows I'm not one for fast food, especially McDonald's. 

"Yup.  It's twisted."

The thing about that craving is that it didn't go away.  No sir ... that one was on board for 72 hours, until Monday, when Chris and I were coming back from an errand and I knew there was a McDonald's around the corner.

"Dude, I'm caving."

He grinned.  (He finds this whole thing amusing, from the potbelly to the bizarre things I want to eat now.)  "It's time."

While he waited in the car, I ran into McDonald's and ordered a cheeseburger from the lady behind the counter.  

"One cheeseburger, please!"  I think I looked euphoric.  I must have.

"One cheeseburger, happy lady?"  

"Yes, ma'am!"

"One cheeseburger for the happy lady!" she said, punching the order into her register and calling back to the guys in the back.

"Cheeseburger coming up!"  A minute later, the cheeseburger I'd been craving slid down the counter and was tossed into a paper bag. 

"Cheeseburger for the happy lady!"

"Thank you!"  (Everyone speaks in exclamation points at this McDonald's, apparently.  And there's nothing wrong with being the "happy lady," in my opinion.)

I went out to the car, my face glowing with pregnancy cheeseburger happiness.  Chris was already laughing at me, but I can't care.  This is part of the process, I guess, all this very odd food stuff.  I bolused 3.5 units for this culinary disaster and ate it in one gulp.  An hour later, 109 mg/dl. 

I swear BSparl was in there, clapping his little hands, the whole time. 

November 09, 2009

Two Heartbeats on D-Blog Day.

Diabetes Blog Day, 2009.  Holla ... and whatnot.The first time we saw him (or her), it was at the emergency room back in Connecticut.  We were only seven weeks into the pregnancy and barely had caught our breath from finding out when the bleeding happened and I panicked.  We spent five hours in the emergency room, poked and prodded and with an IV line at the ready, only to finally be wheeled into the ultrasound room. 

"Just relax, Mrs. Sparling.  And we'll take a look and see if everything is okay."

And the screen switched on and Chris and I saw our baby's heartbeat, strong and steady and fast, beating inside of me.  Everything changed forever, even though nothing had changed yet.

The bleeding stopped that day, and we moved forward, cautiously, frightened, and so hopeful.  A few weeks later, my mother and I (Chris was in LA on business) were at my Joslin appointment for the first "official" ultrasound, hoping to see the baby growing strong and steadily.

"Oh, there it is.  There's your baby.  Those parts there at the end?  The feet.  Those are the little feet, ready to kick."

And I watched as the teeny, hamster-looking creature inside of me kicked his little feet.  So small.  So ... surreal.  I couldn't wait to see him again.

Two weeks ago, Chris and I were at the Joslin Clinic for the first of a few second trimester ultrasounds, and from what my eight months pregnant best friend had already told me, this ultrasound was very different than the first one.  "It looks like an actual baby at that point," she said, her blue eyes wide.

Chris and I talked with Dr. T, the OB/GYN, for a while about how I've been feeling, my numbers, and overall how the pregnancy is progressing.

"I feel good.  Tired a lot, and doing a bit more traveling than I'm used to these days, but I'm feeling better now that I'm in the second trimester and past that fall-down exhausted bit from the first couple months."

"Good, sounds like you're doing great.  So ... wanna see the baby?"

"Yes!"

I hopped up on the examining table and Chris took a seat by the ultrasound monitor as Dr. T. moved in with the external ultrasound wand.  "A little bit of this warm gel right on your belly and ... okay, there we go!"

On the screen was a baby.  A whole baby, all big-headed and waving arms and kicking legs.  Our baby.  Hands with fingers, legs with knees.  This baby looked like a real baby.

"Oh my God, is that him?  He's so big!"  I couldn't believe this was the same little hamster from just a month or so ago.  He took up the entire space of my uterus, which was a big change from all the room he appeared to have a month ago.  Now he looked like he was out of room in there (and I knew that meant my own expansion was coming fast).

"Yes, that's the baby.  Calling him a 'him,' are you?  We'll find that out next month, right?"

I watched as the baby turned and squirmed, raising his arms up and his body lurching just a little bit every few seconds. 

"Dr. T, does he have the hiccups in there?"

She looked closely and smiled.  "Yes, that looks rhythmic and steady.  Looks like hiccups to me.  Would you like to hear the heartbeat?"

She turned a knob on the ultrasound machine and suddenly the room was filled with a steady whump whump whump sound - the sound of our child's heartbeat.  It was incredible, hearing my own heart thudding in my ears with excitement as my baby fluttered along inside of me.  Chris held my hand as I brought the other one up to my eyes to catch the tears that collected there.

Two heartbeats, both inside of me.  

And today, on D-Blog Day, I wanted to share this story with you guys.  You have been with me from when Chris and I first moved in together, back when the dream of a heartbeat other than my own was something I only hoped to one day hear.  Now, every day that passes brings BSparl closer and closer to meeting his mom and dad.

When I was diagnosed, they said that children would be near impossible for me.  And while I know that nothing is certain until that baby is in my arms, I am already so proud of where we've come, as a Sparling family and as an even larger diabetes community.  We have hope now, hope for lives that are wonderful and meaningful, despite diabetes.  Diabetes is a heavy load to carry, but with the support we get from this community, the burden is so much lighter.

Happy D-Blog Day, you guys.  And thanks for being part of my extended family.

November 04, 2009

Dexcom and Desperation.

For a few weeks, I had a tough run with the Dexcom.  Out of the five sensors I'd used in the last three weeks, three of them had gone kaput on me.  And by "kaput," I mean that I'd put in a new sensor after Las Vegas and it instantly gave me "???" instead of blood sugar results.  I've seen the triple question marks before, but usually the sensor synchs back up and rights itself.

Dexcom tossing "???"

But this time, the question marks hung out for ages.   Like hours, and then when it would finally ask me to calibrate, it would work for about 45 minutes ("work" being a loose term here, because it had numbers that were over 180 points off from my actual blood sugar) and then the SENSOR FAILED error would come ringing up.  Stupid error. 

Dexcom sensor - FAILED!

I thought it was just the one sensor, but it happened three different times in three different weeks.  Using the Dexcom, it seems, has helped me get my A1C act together, and since becoming pregnant, the Dex has helped bail me out of many, many unpredictable low blood sugars.  (Lows plagued me during the course of the first semester, relentlessly.  50s, 40s, and 30s coming to stay for a visit without calling first.  No symptoms, no warning, and no predictable time frame.  Without the Dexcom, I wouldn’t have woken up in time for those lows, and I don’t like to think about how far I could have dropped while sleeping.  Whoops, digression.  Sorry about that!)  

So I called my contacts at Dexcom, because they are aware of my pregnancy and how paranoid I’ve become about things lately.  (Actually, I emailed them at 2 in the morning because when the third sensor in a row kicked out on me, I flaked.  I sent them one of those “Sorry I’m a lunatic, but …” emails, and thankfully they got back to me early the next day.)

After a few email threads, Dexcom decided to FedEx out new sensors and help get me back on track.  And for some reason, these worked.  I’d heard from the Twitter crew and from some comments here on SUM that there appeared to be a certain batch of sensors that just weren’t cutting it.  I don’t have the “official word” on what the deal actually was, but I do know that a certain box of sensors just weren’t working right.  And now that I’m cracked into a new box, things appear to be working okay now.  

Which is a relief, because the Dex caught a 29 mg/dl as I was getting ready to leave the house the other day.  

“Holy shit, I’m 29?”  

Chris wasn’t home at the time, so I panicked a little bit.  Not a single symptom was on board, and I was freaking out.  I tested again to make sure, as I drank grape juice straight from the carton.  Yup, 31 mg/dl.  Dexcom was blaring its head off.  

Weird things happen when you’re low and don’t realize it.  Like you find yourself sitting at the kitchen counter, eating a whole bowl of Puffins cereal in one gulp.  Chris came home as I was inhaling carbs.

“Are you okay?”  

“Yeah.  I’m 29.  No symptoms.  This sucks.  I seem fine, don’t I?”

“You do.  You seem completely fine.”  The Dexcom went off again.

“Good thing that’s working again.  Did you have juice?”

“Drank it. I’m eating the whole box of Puffins now.”  Grinned through a mouthful of carby goodness.

When it works, it works.

I’ve been wearing the Dexcom on and off for two years now, but almost 24/7 for the past six months.  And not having it on, or having its integrity compromised through technical failure, etc. makes me feel absolutely naked.  It’s not a cure, it’s not a guarantee for tighter blood sugar control, but it’s the safety net I was hoping for, and now that my basal rates, insulin:carb ratios, and blood sugar trends seem to be unpredictable during these months of pregnancy, I’m leaning on it more now than ever before.

[Dexcom disclosure]

November 03, 2009

Lovenox, Heparin, and WTF.

What the hell am I supposed to take?During my endocrinologist appointment last week, I brought up that itchy, scratchy Lovenox rash to my OB/GYN, Dr. T.  And she wasn’t comfortable with how my body reacted.  

“That rash is from two weeks ago?  How does it feel now?”

“Less itchy, that’s for sure.  But it got all hivey and wouldn’t relax, not for about a week.  It itched like mad.”

“I don’t like that.  I don’t want you to continue to take Lovenox, especially if it gave you that reaction.  Who knows how bad the reaction could be the next time?  I want to switch you to something else.”  She started to write on my chart.  “Heparin could be another alternative for you.”

“Okay, what’s the difference?”

She told me that both Lovenox and Heparin are large-molecule drugs that don’t pass into the placenta, so Bsparl is safe, and also that they both serve the same purpose:  to protect me and my baby from blood clots (the risk of which increases with both Factor V and pregnancy).  

But you guys know how I am by now.  I feel weird taking extra drugs, and I’m very conservative about adding more and more Rxs to my daily routine.  Also, consulting with Dr. Google brings me all this scary information about how Heparin is a category C drug, meaning it could have effects on the baby.  I don't know what's what, but I do know that I need to trust my doctor and her years of experience over a Google search.  (Right now, I'm wondering if I can bypass these drugs altogether and just work out in the airplane bathroom for the whole flight.  Kidding.  Sort of.)

Yet I still find myeslf feeling uneasy, and looking to see if any of you have had personal experience with Heparin.  I'm very WTF about this and confused as can be.  Right now, I’m only on insulin, pre-natal vitamins, and blood pressure meds (don’t worry – safe for baby), but according to Dr. T, I’ll be taking something to help protect me from clots for six weeks after BSparl is born.  (Great.)  So now is a good time to figure out what works best for me.

Once again, I’m clueless about what to expect.  I’m sorry to keep pestering you guys with all these questions, but when it comes to anything other than insulin, I’m lost.  When I wrote about Lovenox before, you guys were invaluable and I learned a ton (even brought some of it up to my doctor).  Now I’m asking once more – has anyone ever taken Heparin?  Any weird, itchy side effects?  Any burning at the injection site?  Any … anything?  

(And BSparl says hi.  He just sent a messenger pigeon to me from the womb.  He is baking cookies in there.  Busy little peanut.)

November 02, 2009

H1N1: Fighting for the Vaccine.

The one needle I can stand. :)Last week, I toddled my pregnant self up to the Joslin Clinic for my endocrinologist appointment and an ultrasound with my OB/Gyn.  And as excited as I was about the ultrasound and the opportunity for Chris and I to see our baby kicking around in there (more on that later), I was just as excited about the H1N1 vaccine.

I know. 

I can't believe I'm saying that, either.  Yes, this is the same Kerri who wrote about feeling "eh" about the flu shot a few weeks ago.  But a few things have come to light in the last couple weeks that have changed my outlook on things.

Like the fact that the Joslin Clinic has been riding me about getting this shot because of my high-risk situation, being both type 1 and pregnant.   

Or the fact that every healthcare professional I spoke with at last week's ePatient conference kept asking me, "You are getting the H1N1, right?" and the look of concern when I said, "I haven't received mine, yet."

Or the very scary fact that pregnant women, regardless of any chronic illness, are singled out as one of the highest risk groups out there.  

I'm not one to leap without looking.  But I'm also not one to put my baby at risk if I can help it, so when Joslin said there was an H1N1 vaccine available to me, I jumped at the chance to get it.  Seems like this vaccine, for some completely ridiculous reason, is not being made readily available to people who need or want it, so if there was one available to me, I was taking it.

It was unnerving, knowing they were injecting me with a virus.  A dead one, of course, but still, with all the information circulating out there about the pros and cons of the H1N1 vircus, it's hard to know what's true and what's just speculation.  Or, unfortunately, what's purely fabrication.  In any event, when I heard about a little girl in my home state who, at the age of 12 had being diagnosed with H1N1 and then died from it just a few days later, it was enough to scare me into rapid and determined action.

But even at the Joslin Clinic, I had to jump through a few hoops in order to be viewed as "eligible."  

"No, I'm sorry.  That vaccine is only for patients who are 24 weeks pregnant and up."

"Really?"  I said, my hands against the counter.  "I was told that being 14 weeks and also having type 1 diabetes made me a shoe-in for this vaccine.  It's like my prize for being the in double risk pool.  So there isn't one for me?"

She checked her chart again.  "Type 1?  14 weeks?  Okay, you can have a seat over there and we'll call you in for your injection in just a few minutes."

It felt so odd, fighting for something I wasn't even sure I wanted in the first place.  But I kept thinking about the pregnant women I'd heard about on the news who had died from H1N1.  And then I thought about all the public transit I'd taken in the last few weeks, and my upcoming travel plans for this week.  Did I want to take the chance?

If it was just me, I may have.  I may have waited or put off the shot or taken my chances.  But I'm responsible for this baby.  And when we heard the heartbeat, loud and strong, and saw him (or her) kicking around in there, I knew that I needed to do whatever it took to take the best care possible of my child.  

So they shot me up with the H1N1 vaccine.  Oddly enough, I felt grateful.

And that night, I promptly felt ill and slept for about 15 hours straight, waking only to test, snack, and drink water.   I wasn't experiencing any full-fledged sickness, but the weather was above me enough that I hid out all weekend long, missing any Halloween festivities and instead camping out at home with hot tea, chicken soup, and Kleenex.

Today?  Feeling much better and on my way to speak at a seminar in New Jersey.  But I keep hearing about others who are seeking out the H1N1 and still haven't been able to gain access to a vaccination.  What does it take to get protection when you need it?  How are there H1N1 clinics in some states but not in others?  Are you someone who is trying to get this vaccine but can't?  Or are you avoiding this shot, and why? 

I've already jumped, so my opinion is moot on this one.  I'm pregnant, my doctors told me this was best, and I (for once) listened.  But this issue is getting bigger and bigger, and with diabetes month just getting started here, I want to know how the diabetes community at large feels about this H1N1 vaccine.  

October 29, 2009

Diabetes Can be a Five Letter Word.

... and that five letter word is "guilt." 

At the ePatient conference last week, Sue Rago was talking about diabetes and the complications that can arise.  "But the complications of well-managed diabetes?  None." 

And despite the fact that I met and enjoyed hanging out with Sue, this statement cut right through me.  Well-managed diabetes produces no complications?  So diabetes-related complications are just the result of an inattentive "host," or "slacking off?"  It's not the fault of diabetes itself?

The direct relationship between diabetes and guilt has always made me feel ... well, guilty.  I'm not familiar with what it's like to live with any other disease than type 1 diabetes, so I do feel lucky that I have never experienced something like cancer, but since my scope is limited, I know this diabetes/guilt dance all too well.  And diabetes - as a disease state including both type 1, type 2, and gestational - always seems to come with some added bonus of "You did this to yourself."  It sounds harsh, but I hear it all the time.

It makes me feel so frustrated, this assumption that diabetes only does what we tell it do to.  "The pump does it all for you, right?  So diabetes is like, simple to manage?"  Or "Just follow the rules and you'll be fine, right?  Bad stuff only happens to people who are lazy and don't take care of themselves."  I've never, ever heard someone ask a person living with a different disease - "Oh, what did you do to make this happen?" - but I've heard someone ask me about my diabetic retinopathy and respond, "Well, you must not be controlling your diabetes very well."

I work damn hard to manage my diabetes, and before I took the reigns on my disease, my parents worked hard to manage it.  I take my insulin, I test my blood sugar, and I see the doctor as often (maybe more often) than I should.  Efforts are made to best manage my health, but the fact remains that I have a disease.  I don't classify myself as "sick" and I don't view my life as compromised, but the reality is that type 1 diabetes is an autoimmune disease that causes my pancreas to stop its production of insulin.  As a result of this, the blood sugar homeostasis of my body has been forever disrupted.  And while the medical advances of the last few decades have been tremendous, giving rise to things like improved meter accuracy, insulin pumps, faster-acting insulin, and continuous glucose monitoring devices, there still isn't a cure.  My pancreas remains busted, so I will never be in "perfect diabetes control."

Yet so many people think that a pump or a medication is the answer, robbing fault from diabetes for any complications that may arise and instead making complications the result of "something I did."  I will fight that assertion tooth and nail for the rest of my life, because I care too much about my health and work too hard to let the perception of complications be that of fault. 

Back in March, I found this piece of paper wedged into an old diary of mine from middle school:

Diabetes and guilt - nasty combination.

Even then, as a kid, I was taught to feel solely responsible for my diabetes, as though diabetes itself didn't play a role in any of the outcomes.  "If I want to live:" is how that piece of paper starts off.  What a heavy burden for a child with diabetes.  High blood sugars?  My fault.  Spilling protein into my urine?  My fault.  Any threat of complication?  My fault?  Diabetes wasn't the cause - I was, apparently.  (Granted, many times highs and lows were a result of being a rebellious teenager or eating a 'forbidden food,' but were it not for the diabetes in the first place, it wouldn't be an issue.)

I don't agree with this mentality, and I refuse to subscribe to it.  Type 1 diabetes requires daily maintenance and diligence, but even if I follow "all the rules," there can still be complications.  My genetic make-up plays a role.  My family history plays a role.  And of course, my actions play a role.  This isn't a diatribe to give me a free pass to slack off and not care about my health. I need to take care of myself and work hard for my health.  I have always tried to remember my role in this relationship with diabetes, but I can't fool myself into thinking that if I just work hard enough, my body won't ever exhibit diabetes complications.  If my eyes start to bleed, it's not because I didn't care enough.  Things happen, and I need to be able to roll with whatever life dishes out.  I live with diabetes every day - I don't need the guilt.

Because at the end of the day, diabetes complications are the result of diabetes.

October 27, 2009

Diabetes Linky Bits: What I've Been Reading.

Due to some recent traveling, I've been falling way behind on my fellow diabetes bloggers.  But there have been some posts in the last few days that I think are must-reads.  So today, while I finish up my visit in Philadelphia at the ePatient 2009 conference, I wanted to share some of my favorite posts from the diabetes blogosphere:

Diabetes blogs rule.Lee Ann at The Butter Compartment is a longtime type 1-er and a lady who understands the trials of fitting an insulin pump into a fancy dress moment.  Thanks to some Twitter tips and some good, old fashioned ingenuity, Lee Ann managed to McGyver her way into a fashionable moment.  (And personally, I never underestimate the power of duct tape.)

Diabetes blogs rule.Wendy at Candy Hearts stumbled upon a Letter to the Editor from some idiot who saw a little boy take an injection at Burger King.  Apparently, the man who wrote the letter was horrified  by the drug taking at the table and felt the need to write to his local paper.  And while Wendy admits to having no idea what was in that syringe, she wrote a response to The Burger Grump, outlining why certain people may need to take an injection before eating (namely, did the kid have diabetes). 

Kelly at Diabetesaliciousness added her two cents, as well.  What's your take on this Burger Grump?  Do you feel that a PWD should be able to inject in public?  (Personally, I think it's no different than blowing your nose at the table.  If you can keep it clean and sanitary and discreet, it's fine.  People are allowed to manage their diabetes in public, so long as they aren't creating unsanitary conditions for others.)  If you want to chime in with your own letter to the editor, click on this link and visit the Pocatello Idaho State Journal website.

Diabetes blogs rule.And those of us here on the East Coast apparently missed an AWESOME event, at last week's TCOYD in San Diego.  Manny touted it as the best diabetes conference he's ever attended, Cherise gave it a definitive thumbs up, and George agreed.  I've never attended one of the TCOYD conferences, but apparently there's one in my homestate of Rhode Island next September, and BSparl and I will definitely be in attendance.  Will you be there? 

What have you been reading in the diabetes blogosphere?

October 26, 2009

Ground Control (Solution) to Major Tom.

Get in control.  Cheesy photo description, no?(That’s just a cool song and I’m in the mood for a little David Bowie.  Humor me.)

I’ve learned a lot in my frequent visits to the Joslin Clinic over the last six months or so, which just goes to show that it doesn’t matter how long you’ve had diabetes – there’s always something new to learn.  As I was preparing for pregnancy, there was a lot of focus on blood sugar control, and frequent monitoring.  That, I knew.

But what I didn’t realize was how often I should have been checking my meter with control solution.  

I have to be honest:  Before Joslin told me to get my act together re: using control solution, I never used it.  Ever.  It would come in the meter kits when I first opened them and it was the first thing I removed.  I ran on the assumption that my meter was the diabetes equivalent of “the customer” – it was always right.

The Joslin CDE disagreed.

“No, you need to be checking the accuracy of your meter with the control solution at least once a week, Kerri.  That’s important to make sure everything is in range.  Think about it – you’re dosing insulin based on these results, and you’re calibrating your Dexcom, too.  Don’t you want to make sure the numbers are accurate?”

Good point.  But how naïve am I to assume that the numbers ARE accurate?  Sometimes I get a result on the meter that I know is way off, and I usually test again to see what the deal is.  But I never thought to bust out the control solution to keep tabs on the accuracy, as well.  

Since I was (and am) trying to be Captain Compliance when it comes to Joslin instructions (thanks to the ever-growing BabySparl), I dug up some bottles of control solution and started double checking my meter.  And yes, I do feel soothed when the control test comes back right on target, because it reinforces my faith in the meter.  And no, I haven’t seen any wonky control results come back yet, but at least I’m looking out for them.  

If you’re already checking your meter with the control solution, bravo!   Just wanted to pass this info on, in case you were like me and tossing the control solution into a shoebox to reside with dust bunnies under the bed.  (Or with Siah bunnies, depending on how much your cat sheds.) 

As I’ve mentioned, I’m learning so much now that I’m in constant contact with my doctors, so I want to pass on all the tips I find to you guys.  Because it’s quite obvious that while I try pretty hard, the rules of the game seem to change overnight.

October 22, 2009

Diabetes, Lovenox, and Bathroom Jane Fonda.

The flight to Las Vegas from Boston is a long one – six hours on the way there and five on the way back.  I talked with my doctors before taking the flight, and being pregnant, I’m dealing with an increased threat of deep vein thrombosis.  The Factor V Leiden gene in my body is also a red flag, so these longs flights caused some concern for my medical team.

“We’re not worried so much as we have some rules for when you’re flying. The first is that you need to get up and move around about once every hour to keep your circulation steady and your legs moving.  And the second thing is that we’d like you to take Lovenox on the days that you’re flying.  That will help combat the Factor V risk.”

Take a shot?  No problem.  At least that’s one thing I can commit to without fear.

So about an hour and a half before my flights took off, I snuck into the airport bathroom and pulled out the pre-filled syringe of Lovenox.  Lovenox is an anti-coagulant drug that helps to prevent blood clots.  I don’t know much about it, other that it’s safe for pregnant women to take and it was one of the conditions set forth by Joslin, so I pretty much do what they say these days.  I’ve never taken anything like it before, so Wednesday evening was my first time.

Fellow diabetics, I just need to say that we have it good with our teeny, ultra-fine needles.  This Lovenox needle was clumsy, long, and thick.  “Inject it right into your abdomen, where you’d normally take an insulin injection,” the doctors recommended, so I did just that.  But it sucked a little bit.  One of the side effects of the injection is bruising and soreness, and they’re not kidding.  Within 15 minutes of taking the injection, a deep red thumbprint popped up on my abdomen, tender to the touch.  

But that seems to be the only side-effect I’ve experienced.  Except for a little bit of paranoia.  And now, a few days after the trip, I have the itchiest, red rash at my injection sites. 

Once a doctor tells me that I could be at risk for something, I do what I can to help mitigate that risk.  For these flights to Las Vegas, I took the Lovenox injections and made sure I was up and about once an hour, but I also did something else.

Every time I went into the airplane bathroom, I did some weird kind of calisthenics.  Thanks to BabySparl, the need to pee is hourly (making me test my blood sugar all the time, wondering, “Is this because of Baby or am I high?), so I’d use the ladies’ room and then face the mirror.  And then do this bizarre mix of high knee raises, running in place, and stretching.  Thankfully, being barely 5’4” gives me enough room to move around in there, but I felt like a tool.

“And stretch!  And stretch!”  I heard Jane Fonda in my head as I faux-exercised in the airplane bathroom.   

I prayed that the stewardesses couldn’t hear me thrashing around in there.  How the hell would I explain that?  “I don’t want a blood clot so I’m doing a little dance here in the bathroom.  That's legal, right?”

The itchy frigging rash from the Lovenox injections.
 
The flights were fine.  (If you don’t count the flight from Boston to Las Vegas, which included an extra hour on the trip due to a strong headwind, expired food, not enough meals for passengers, no movie, and no working radios.  US Airways, you sucked it up on that one.)  Lovenox was a success.  And now I feel like I’ve managed to fit in a workout, even at 35,000 feet.  But I’m curious to know if anyone else has ever taken Lovenox, or another kind of anti-coagulant.  And if anyone has ANY tips at all on dealing with this frigging itchy rash.  It's starting to go away, and I know it's just part of the side-effect fun, but it's making me scratchy-crazy. 

It’s all new to me, and I’d appreciate any feedback from someone who’s been there.  (And if you have airplane exercise tips, share those, too.  I’m heading to Florida in two weeks and am wondering how I’m going to embarrass myself on that plane, too!)

October 14, 2009

Dear Baby.

Dear Baby,

I've been thinking about you for a long time.

My doctors told me it would be a challenge to have you.  They said that diabetes would be a tricky hurdle as I planned for you.  They said you might not happen.  There were so many reasons to be scared and so many reasons to doubt, but I never gave up on you, Baby.  I have always wanted you and have worked so tirelessly to make my body safe for you.

And at the end of August, at the Joslin Pregnancy Clinic appointment several weeks ago, I thought you could possibly be there.  I thought there was a chance, because your dad and I were ready to try for you, so we took that leap.

"It's so early, so the test might not show a positive result, but we should do one anyway.  But remember, it might not be positive because you wouldn't be very far along."  The CDE gave me a warm smile while the nurse went to test the sample.

Your dad went into the waiting room to sit.  We didn't know how long it would take to get the results back.  And while I was waiting, the CDE and I were talking in the hallway about how great it would be if you really were there.

Then the nurse opened the door of the lab and came out with the test in her hand.

"Oh, she's definitely pregnant.  Look!"

I'm pregnant!!!

And I saw two lines.  And the CDE began to cry.  And then the nurse began to tear up.  I cried, too, because I was so scared and humbled and in love with you already.

"Chris, Chris!"  Even though we were in a waiting room with people who were there for their own appointments, the world sort of stopped for a minute so we could have our moment.

Chris heard the commotion from the waiting room, and came over, his eyes shining.  And Baby, I wish I told him about you with even a scrap of grace.  That I'd whispered, "We're pregnant!" or "We're having a baby!" or even, "Oh my God!" 

"It's on!" is what I said.

Super classy.

We hugged.  And we kissed.  And the family in the waiting room burst into a quiet applause.

There have been many weeks that have passed, and they haven't been the smoothest.  There have been some very scary moments, and I'm still scared to be writing this all down.  There have been so many doctor's appointments since that day.  Thankfully, everything seems to be just fine and on track, and my diabetes is under the best control I've ever achieved.  (Last A1C, taken Friday, was 6.2%!)  You are growing fast, and we've slowly told our friends and family about you.  Everyone is very excited, and I'm working really hard to make sure that we both remain safe.  You're coming next spring  and we couldn't be happier.  Being your mom is the most important job I will ever have, and I'm ready.  

When I looked in the mirror this morning, I saw the rounded baby bump and felt such a surge of happiness.  I don't know if I'll be the best mom, or the most "together" one, or even if I'll be one who has any clue what she's doing.  But I'm so excited for you to arrive, even though I am scared and careful and preparing as best I can. 

You are so wanted.

Baby, I can't wait to meet you.  I've always wanted to be your mommy.  And in just under six months, I'll be able to hold you in my arms instead of just in my heart.

I love you so much.  And now everyone knows.

Love,
Your Mommy

October 08, 2009

Needed More Diabetes Real Estate.

Wearing two diabetes devices has its mental hurdles, but sometimes the physical hurdles are the most irritating.  For the last two weeks, my husband and I have been packing up our old apartment and I've been closing out my office at dLife, so there's been a lot of physical lifting and moving of stuff.

Which means there's been a lot of Dexcom and insulin pump site set jostling.  Wearing the Dex and the pump full-time means plenty of little red dots on my thighs and lower back, and the physical movement of moving has made these areas even more irritating and inflamed.  

What's my point?  

My point is that my regular sites are sore.  And I need to switch things up a bit.  Again.  So last night, I opted for an arm site for my infusion set, instead of my standard thigh or hips.  I've worn the site here before, and it was comfortable, but it can be a hassle wrangling the tubing and shirts/bras. 

Needed some new diabetes real estate, you know?

So this round, I opted to use the longer tubing (43 inches) and I'm snaking that up my arm, down under the back of my bra, and then down to my hips where the pump clips to my pants.  The longer tubing gives me just enough room to accidentally pull on the tubing without jerking the site out.

It is a very different place for me to wear it, though.  So I reminded Chris to remind me.

"Dude, I'm showing you in case I forget.  The site is on my arm, okay?"

"Got it."

Now, as I sit here and write this, I can't feel the wire and it's undetectable underneath my long-sleeved shirt.  Hopefully wearing the site on my arm for a few days will help my other sites heal and give me a little breathing room on the ol' real estate front!

October 07, 2009

Flu Shots Suck.

I hate flu shots.I'm not a good PWD, because when I'm told to get a flu shot, I do whatever it takes to skirt the issue.

"I already don't feel well."
"I don't like needles."
"I think flu shots give you the flu?"
"They never help me avoid getting sick."
"Your mom should get a flu shot."
"No one likes flu shots and they smell." 

But a few weeks ago, I was at Joslin and they were prepping me for the worst that winter has to offer, namely the Regular Flu and then the ever-looming Swine Flu.  I have to be honest - even though I have a lot of faith in my medical doctors and I believe firmly in their fine training (especially at Joslin), I always second-guess these vaccines. 

But this year, with my health under careful watch by the Joslin Clinic and my eye on the prize of good control and good health, I let them coerce me.

"Do I have to get this shot?"

The nurse wrinkled her nose.  "Yes.  But I can't force you.  But yes."

"You mean you can't make me get it but you can guilt the hell out of me until I get it, citing all kinds of studies and risk groups and the benefits of vaccination?"

"Yeah, that's about the bulk of it."

So I rolled my eyes and then my sleeve, letting her inject the flu shot into my shoulder.  

"Next time you're here, you'll want to get the swine flu vaccine, okay?"

"Seriously?  Isn't it the first round of that?"

"Yes, but people with diabetes are on the high risk list, so it's going to be the same recommendation from your doctor as this one."

My response:  "Grumble, grumble."

Last year, I skipped my flu shot because I felt a little under the weather that day and they advised me to wait.  And I didn't go out of my way to follow-up.  The two years prior, I ended up in the line at work on "flu shot day" and received the vaccine, but reluctantly.  I don't like the idea of injecting myself with a dormant virus in efforts to make antibodies. (If that's how it really works ... don't quote me on that.  I'm sort of making this up as I go along.  See also:  not a doctor.) I don't like going out of my way to expose myself to different illnesses.  It just seems counter-intuative.

Am I the only diabetic who is reluctant to get their flu shot?  

September 29, 2009

Inspired by the Parents.

Parents of kids with diabetes - it's a full time job.Last night I had a chance to sit with some parents here in Norwalk and talk about our collective experiences with diabetes.  These parents were taking care of children with diabetes, ranging from the newly diagnosed three year old to the newly diagnosed 13 year old, and everywhere in between.  High school angst, the issues of disclosure, the pursuit of "perfection," and all those other issues that parents of kids with diabetes, and the kids themselves, are dealing with.

"I was invited here to talk about how to raise a child with diabetes without losing your mind.  But I'm not really qualified to talk about that sort of thing, to be honest.  I'm not the parent of a diabetic child.  I am the diabetic child."

The parents at this group were wonderful, all actively engaged in their child's health, just trying to make sense of what diabetes doles out every day.  We were a small group - about 12 of us in total - so the conversation flowed pretty smoothly and comfortably.  And we hit upon some very intimate issues.

Like menstrual cycles and their impact on blood sugars.  (Remind me again why I'm talking about puberty and my female hormones with strangers?)  Or the dodgy things I did as a kid to lash out at my diabetes or my parents or at life in general.

I admitted to hitting the old school glucose meters with a touch of rubbing alcohol so that the result would come up lower.  I also admitted to knowing that my mother hid ice cream sandwiches in the frozen vegetable boxes, but I ate them despite her efforts. 

"I wasn't the best kid, and definitely not the best kid with diabetes, but I made it through okay.  And my parents and I?  We still talk.  And we still like each other."

They laughed.  

"What advice do you have for parents who are dealing with teenagers?  What's on the 'don't ever say that,' list?"

And the only thing I could think of was the epic "We."  

"It's just that one pronoun.  The 'we.'  We need to test our blood sugar.  We need to take our injection.  We have diabetes.  This always drove me nuts because unless my mother was testing her blood sugar or my father was taking an injection, they weren't diabetic.  They didn't know what the lows and the highs felt like, only what it felt like to watch the highs and lows and to feel those moments externally and emotionally."

The group nodded, understanding.

"But it wasn't until I was older that I realized the 'we' concept did apply.  It wasn't just me.  It was all of us, as a family, living with this disease.  And even though I was the one who had diabetes, my parents were dealing with something, too.  Diabetes has a lot of different sides to it, and it doesn't just affect the person who actually has it.  So it is a 'we' thing.  We live with diabetes, as a family.  And it took me a long time to realize that."

One of the parents piped up.  "How long?"

"Like ... yesterday morning?  Maybe Friday, at the earliest." 

She laughed.  Another parent asked, "When will my kid figure that part out?" 

"I don't know, honestly.  Everyone's experiences vary.  For me, diabetes wa a dragon that we, as a family, fought together.  We didn't fight one another, but it was us against IT.  And now, I'm a married woman with a husband who goes to the doctor with my instead of my mom and dad going, and my mother has no idea how this insulin pump works or how the CGM works or what the hell 'basal insulin' is, but she still has the same protective instincts, and still works hard to take care of me."

"Even just this past Friday, at my Joslin appointment, I saw this CDE I'd never met before.  This lady was critical of every number, every moment of my management, and yelled at me for doing too much while she yelled at me for not doing enough.  I was feeling pretty emotional after 45 minutes of this, so I went to take a break to calm down, leaving the CDE and my mother alone in the room together."

"And I guess while I was gathering my wits in the bathroom, my mother, who had been sitting there quietly and watching the fireworks, leaned towards this CDE and said, 'It's been a long, emotional day.  And you are supposed to support her, not rip her apart.  I think you should tone it down a bit, don't you?'"

"I guess you don't ever age out of being the parent of a kid with diabetes."

Diabetes is a journey, and for some of these parents, they've been on it for many, many years.  For others, they are just beginning to take those first steps.  And for me, with more than two decades with type 1, it was beyond amazing to see them gathered together around the table to find answers, find support, and find inspiration.

September 18, 2009

30 Things About My Invisible Illness.

It's the meme taking the chronic illness bloggers by storm ... and I wanted to cram this one in before Invisible Illness Week came to a close.  Here's my edition of 30 Things About My Invisible Illness You May Not Know.

   1. The illness I live with is: type 1 diabetes
   2. I was diagnosed with it in the year: 1986
   3. But I had symptoms since: the summer before
   4. The biggest adjustment I've had to make is: adjusting to the changing demands of a disease that doesn't sit still for even a second.
   5. Most people assume: that diabetes isn't a serious disease. They couldn't be more wrong.
   6. The hardest part about mornings are: when the start out of range.  Or with a cat on my head. 
   7. My favorite medical TV show is: I actually don't like medical TV shows.  I'd rather watch Family Guy.
   8. A gadget I couldn't live without is: my glucose meter.
   9. The hardest part about nights are: having low blood sugars in the middle of them.
  10. Each day I take 2 pills & vitamins: I take a prenatal vitamin, blood pressure medication.  And then there's that whole "insulin" thing 24/7.
  11. Regarding alternative treatments: I think that insulin is the only course of treatment that works for type 1 diabetes right now.  But I believe that an overall healthy lifestyle is important, regardless of someone's medical history.
  12. If I had to choose between an invisible illness or visible I would choose: These choices suck.  I'd rather not have any illness, thank you very much.
  13. Regarding working and career: I work.  And I have a career. And I'm finally making diabetes work for me, instead of against me, in a financial sense.
  14. People would be surprised to know: that it's not as easy as we make it look.  Sometimes it hurts in every way.
  15. The hardest thing to accept about my new reality has been: that I have no memory of the "old" reality.
  16. Something I never thought I could do with my illness that I did was: get married.  I'm not sure what put the thought in my head as a child, but the doctors scared the pants off my family and I when I was diagnosed.  They had us convinced that I might not be healthy as an adult, and that I may be "hard to love."  Pfffft.
  17. The commercials about my illness: are never about MY illness.  They are always about type 2 diabetes.
  18. Something I really miss doing since I was diagnosed is: I have no idea - um, I'm sure I liked Halloween more before I was diagnosed, in second grade. 
  19. It was really hard to have to give up: hoping for a cure.
  20. A new hobby I have taken up since my diagnosis is: ... these questions are hard because my diabetes has been in the game for almost all of my life.  I don't know what new hobbies I picked up in 1986, but you can bet that there weren't any hobbies I avoided as a result of being diabetic.
  21. If I could have one day of feeling normal again I would: do nothing.  That would be awesome, to just sit around and hang out, without worrying about a single number.
  22. My illness has taught me: to be strong.  And to be realistic.
  23. One thing people say that gets under my skin is:  "That's not a big deal. It's better than __________"  You know what?  It is way better than a lot of things.  But that doesn't make it any less hard some days.
  24. But I love it when people: really try to understand, and see me as a person, not just as a diabetic.
  25. My favorite motto, scripture, quote that gets me through tough times is: "This, too, shall pass."
  26. When someone is diagnosed I'd like to tell them: that they aren't alone.  And they'll be okay.
  27. Something that has surprised me about living with an illness is: that it's not the definition of who I am.  It's just a small part of the bigger ... problem person.  ;)
  28. The nicest thing someone did for me when I wasn't feeling well was: leave me alone. 
  29. I'm involved with Invisible Illness Week because: if we don't raise our voices, we remain invisible.
  30. The fact that you read this list makes me feel: ... like you might post your own list. 

Get involved with Invisible Illnes Week and let people know that just because you can't see it doesn't mean it isn't there.  And have a great weekend!

The Perfect Storm of Stupid.

Perfect storm of stupid.  And balls. I didn't check my pump before I left for work yesterday morning.  Not a big deal - I live close to work and I have back-up supplies at my office anyway, so there wasn't much I couldn't pinch hit for.  When the day started, I had about 20 units left in my pump to get me through to 5:30 pm.

No problem.  I'm using about 16 throughout the course of a day at the moment, so I wasn't worried about running out.  I went to work and did my thing.

But I forgot about our editorial dinner plans after work, taking place at my coworker's house, located about 40 minutes away.

And I also completely blanked when I went home for lunch because I was so hungry and so distracted by what I was working to finish before deadline at work that I neglected to refill my pump reservoir.

And I also was so elated by a freelance opportunity that came in late afternoon that I ended up racing out of the office, en route to dinner, without grabbing the insulin pen from my desk drawer.   

So I'm in the car.  Driving up to dinner.  With six units of insulin in my pump. 

"We're having apple crumb cake for dessert!" said my coworker's excited email.

I am Kerri's perfect storm of stupid.   

A few things were working in my favor:  the Dexcom had me flatlining, for over three hours, at 98 mg/dl.  I also had enough insulin in my pump reservoir to draw out a unit or two with the syringe I keep in my insulin case.  So there were options.

I didn't panic.  I just thought I'd lay low, eat conservatively, and ride it out until I got home and could change my pump.

Throughout dinner, I kept a close eye on the Dexcom and tested every 30 minutes or so to confirm.  But after a dinner of vegetables, chicken, and delicious rice, I saw the graph starting to spike a little bit.  Not crazy, but edging towards 150 mg/dl for the first time that day.  I avoided the crumb cake.  And knowing I had very little insulin left after dinner (only 0.3 retrievable units), I started to get a little anxious.

So I reached into my kit for that syringe.  

Which wasn't there.  

I am a maelstrom in Kerri's perfect storm of stupid.

In an idiotic move, I waited.  And then, about an hour later, went into the bathroom, removed the insulin cartridge from my pump, and stuck my pinky finger into the end of it to press more insulin into the tubing.  I've done this a few times when desperate, and knowing I had about an hour before I'd get home, even if I left right then, made me willing to take the foolish risk.

Another 30 minutes went by.  My numbers hit 177 mg/dl and stalled there, which made me think it was going to be okay.  I left my coworker's house and drove back home.  Once I got home, I switched out my pump immediately and then relaxed for a little bit.  Numbers were steady-ish, but nothing that made me jumpy.  

"Oh, starting to dip a bit."  The Dexcom said I was 101 and falling, and my meter confirmed with an 81 mgm/dl.  "I'm going to down a swig of juice and a kiwi before bed."

Chris:  "Why are you talking to yourself?"

Me:  "Because ... I don't know.  It's expository for the blog post, I suppose."

Chris:  "Okay."

Right before bed, I was 111 mg/dl, steady Dexcom, and feeling okay. So I went to sleep.

What makes this perfect storm of stupid particularly ... stupid is that my move in the bathroom with the unmeasured bolus was a disaster.  I had no idea how much insulin I'd taken, and I only knew some made it into my skin because of the little pinch I felt.  I could have taken one unit, four units ... or who knows how many.  But I'm obsessively stalking these highs and I was willing to take the risk.  Which wasn't smart at all.

Because at 2:51 am, I woke up completely drenched in sweat, my tongue a deflated balloon in my mouth, and panic buried underneath my exhaustion.  A full glass of juice, a concerned husband, a messy Kerri, and a prowling, yowling Abby.  A blood sugar of 38 mg/dl a few minutes after downing the grape juice. 

A perfect storm of stupid.

Preparation can't be overemphasized.  When your pancreas doesn't make it's own insulin and you're relying upon external sources, and when every food excursion depends on your careful calculation, winging it can cause problems on either side of the scale.  And all the lectures and blog posts and well-intentioned moments can't replace good, old fashioned stupid human behavior.

I am Kerri's hairdryer, running at 3 am because the sweat from the low was so copious and nasty.  I am Kerri's low blood sugar walk of shame.  I am speaking in third person because I'm so beat down tired today.

Diabetes, dude, you are The Suck.    

September 10, 2009

A1C Payoff.

Oh hell yes.I've worked very hard over the last few weeks.  There's no denying that.  

I've logged blood sugar numbers on the Kevin spreadsheet and busted my butt to keep up with the maintenance of those logbooks.

Chris and I have counted carb after carb, making sure that I'm dosing accordingly.

I have changed some of my "bad habits" here and there in efforts to get crap under better control in pursuit of BabySparl.  (I even gave up coffee.  For anyone who knows me, THAT is a huge thing.  Huge-r than logging numbers.)

And yesterday, after spending the entire day under the weather, my phone rang.  Dr. CT was calling with my A1C results.

"Kerri?  This is Dr. CT.  I have your blood work back."

I was napping off my illness just before she called, so I had to shove the cat off my head and rub the sleep from my eyes.  "Okay.  How'd I do?"

"Wonderful.  This is just great - such progress!  You're at 6.3%.  You have done a fine job."

"No kidding?  6.3?  That's the lowest I've had in years.  Ever, maybe."

"Well I wanted to call and tell you personally.  I saw these results and said, 'Oh.  This will be a fun call!'"  

"Thanks, Dr. CT.  Thanks for calling."

And that's that. 

There's so much swirling around me right now and so much change on the horizon that I'm excited, ready, scared, and overwhelmed and all I can think is that tomorrow marks 23 years that I've been living with type 1 diabetes and I'm still learning so much every.  single.  day.

September 08, 2009

Six Little Habits: The Bad Ones.

I WILL be good!Taking a cue from Rachel and Cherise, I wanted to post my diabetes "bad habits."  (Unfortunately, it didn't take long to come up with six.)  But thankfully, after months and months of extreme tweaking, my bad habits aren't nearly as bad as they used to be.

1.  Bolus-Stacking.  (See also:  rage bolusing)  I have a very, very bad habit of stacking boluses when my blood sugar is high.  You know ... test and see that 212 mg/dl, take  two units to correct it back to 100 ... test again 45 minutes later to see 245 mg/dl staring back at you ... freak out and take another unit for good measure ... test one more time an hour later to see no real change ... lace in two more units because you're angry and frustrated and sick of the high ... only to crash five hours later with a 45 mg/dl with your face mushed into a can of Pillsbury frosting.  Not that I've done that. But if I were to do that, it might play out just like that.

2.  Carb Winging It.  Until recently, I've been an estimator.  A SWAGger (scientific wild-ass guesser).  Someone who kind of wings the whole carb-counting thing and hopes that there were only about 15 grapes in that snack bag or that the apple was really "small" instead of "medium."  With the little weeny doses of insulin I take, counting carbs with precision is crucial to making sure my numbers stay stable, so when I'm guessing as to the carb count, the blood sugar results go all over the place. 

3.  Shooting with a Mouthful.  This is a bad habit pointing out by my endocrinologist a few months ago, and one that was wicked hard to break.  And I have no idea how I ended up in this terrible habit to begin with, but it's not good.  I had a terrible tendency to start eating, then decide to bolus.  Even if the carbs were counted perfectly and the insulin dose went in without issue, I wasn't giving the insulin any time to act before introducing the carbs.  Thus, making my numbers go berserk after meals.  No more shooting while I'm eating. Now I need to shoot up before eating.  Makes a big difference. 

4.  Self-Consious During Workouts.  Another bad habit.  When I go to the gym, I used to leave my insulin pump at home and then reconnect when I returned.  It worked out to keep me from going low during workouts, yes, but it was also because I didn't like having the device attached to me while I was wearing form-fitting workout clothes.  Stupid Kerri.  Sure, I was avoiding the lows, but I was also ending up close to 180 mg/dl by the end of my workout.  With pre-pregnancy goals of 150 or lower, this is unacceptable.  So I have to suck it up and wear the pump while I exercise and even sometimes go easier during a workout to avoid lows, instead of sacrificing blood sugar control for an extra mile on the treadmill.

5.  Log Lagging.  I have a good habit of starting logbooks, but a terrible time keeping up with them.  This has been a hard habit to break (habit to break), but I'm close to turning it around.  Logbooks are my diets - I am excellent at the outset, but then I fall apart.  Thankfully, I've got a team at Joslin and a husband at home who are helping keep me accountable, and it's making a world of difference.

6.  Blame Game.  And a sixth (but certainly not the last) bad diabetes habit that I have is my role in the blame game.  I put a lot of pressure on myself to get things "right" and when the diabetes outcome isn't what I'm hoping for, I tend to blame myself.  I have to constantly remind myself that strong efforts and a decent attitude go a long way in this marathon, and I can't beat myself up for every low or high that crops up randomly.  Diabetes isn't fair, and it isn't easy, and it sure as hell isn't my fault, so I just need to roll with the punches as gracefully as I can.

What are your diabetes bad habits?  Or maybe it's better to ask - what are your good diabetes habits?  I'm going to have to concoct another "good" list soon - they're way more fun.  :)

September 03, 2009

Goin' Decaf.

I did it. 

I started my mission while we were on vacation in Barcelona, because between the time change and our eating schedule and the fact that sleep was a hot commodity, it was a good time to let go of the caffeine addiction.  No real withdrawal, no extreme headaches, and no unrighteously sassy moments where I can't function "WITHOUT MY CUP OF COFFEE DAMNIT!" 

This is a big step for me, because coffee and I were buddies.  

Love it. 

Bestest pals.

Still lovin' it. 

Friends all day long.

But now, I have a new pal.  Someone who can still be part of the collection of stupid iPhotos that the editorial team snaps every few days. (These photos are known as the Friday Face-Off, where we take one photo to emulate, like this one (my version) or this one, and we all recreate it ourselves, then paste them together as a college.  My favorite so far was when we all tried to look like my chubby-cheeked niece.  But I've once again digressed.  Ignore me.) 

My new pal is decaf, and I have embraced the change.  The coffee shop downstairs makes a mean iced decaf coffee, and just a short walk away from my office is a fabulous graham cracker flavored coffee that comes in delicious decaf.  I am finally weaned off the caffeine, but I still get to enjoy the taste and the "coffee runs" that are part of the social routine in my office.

My new love.

It's nice to feel free.

It's also nice to not drink so much coffee that my fingertips actually jitter to the point where I can't type a sentence without mangling most of the words.

FutureBaby, I hope you appreciate this.  Because it was HAAARD.  But I know it was worth it.

August 27, 2009

Pink is the New Quickset?

Even though I've been pumping for several years, I've only used one kind of infusion set in that whole span of time.  So last night was a diabetes first for me - my first Inset infusion set.  

My first thought was, "Um, big needle?  What's that about?"  But it's just a mega needle for filling the pump reservoir.  The infusion sets are luer lock (which I'm not sure is one word or two or what it means other than some version of "it's like a bottle cap"), which means that using the new sets means using new reservoirs.  I'm not sure how I feel about this, but I think I could adjust.

Mega needle?  No big deal.  It's not going in me. :)

In addition to the funky reservoirs, the Insets come with their own built-in insertion device.  This is a big score for someone like me, who travels a lot and is always having that mid-drive home to RI panic attack of "OMG IS THE QUICKSERTER IN MY BAG?!"  With the tubing coiled around the infusion set there, it's a little complicated (or at least it was for me, this first time) to prime the pump and pull away the adhesive cover.

Pink.  I can't believe I'm using a pink set and am OKAY with that.

But the fact that it cocks back and becomes its own insertion device?  I'm sorry - that's just downright badass to me.  (It also slightly resembles a birthday cake, but that's neither here nor there.) 

Birthday cake, anyone?

One thing I didn't realize until I had attached the site was that it was pink.  Pink, pink, girly pink.  "Chris, it's pink!"  And he took a peek.  "It's cute.  I like it." 

Another change for me to get used to was the fact that this set doesn't connect to the tubing by swiveling in place.  It snaps together like a seatbelt.  It isn't as low-profile as the Quickset hub, but it's pretty close.  But I was weirded out by one thing:

"Where is the pump cap?"

I'm used to that little plastic disc that covers my set when I'm showering or in the ocean or during intimacy.  How does this new infusion set stay "closed" even when I'm disconnected?  Does anyone know?  Or it is just supposed to be open like that? 

All hooked up on the left thigh.

One thing is for certain:  this kind of infusion set does produce less garbage.  Here's the aftermath from a site change with the new infusion set: 

More diabetes carnage.

I like that the set can close all on it's own and be chucked into the sharps container.  And I also kind of like the spaceship look of the infusion "pod."  Actually, I just like trying something new for a change. 

The disease doesn't change.  Diabetes is every day and it's the same kind of crap every day.  But a little technology swap or a different flavor of juice to treat a low or a new kind of workout at the gym to mix up my routine?  Sometimes you just have to appreciate these little bits of change. 

(Also:  You guys are great.  GREAT.  You had so much great feedback on yesterday's post that I really feel like I have the right questions to ask my endo this week.  THANK YOU for all of your informative comments!!) 

August 21, 2009

Staying Accountable.

It's been three weeks since my Joslin appointment and in that time, the accountability train, and thankfully, it hasn't derailed.  Or smashed into me. 

Yet.

But also in that time, I traveled to Spain, had plenty of wonky lows while traveling, didn't have internet access, and battled the time-space continuum, in addition to working plenty of hours at dLife before the trip and upon my return.  Stress levels?  Not at their lowest.  Also, logging opportunities?  Minimal.

But DUDE.  I'm still doing it.  

Thanks to the power of the Kevin Spreadsheet and the fact that I sit on my rear end all day long, staring into the abyss of my work Mac, and also thanks to the jazzy little Ann Taylor flashdrive I picked up at BlogHer, I actually have logbooks that mean something.  And I've actually stayed up on them for the last three weeks. 

Note:  I hate logging.  I always have.  I may always hate it, but the undeniable fact is that logging makes me accountable, too.  Seeing those numbers and the patterns they form forces me to recognize tricky trends and gives me enough perspective to make tweaks.  But I do so despise it.  It's a pain in the arse

The toughest part has been logging day-of.  Before we went to Spain, I was at work and able to keep the spreadsheet open on my desktop and update it as needed, never really breaking from work to fill in the gaps, but just keeping up with things as they happened.  And at night, I'd plug in the flash drive late at night, fill it in, and then start again the following day.  It was a tedious system, but I kept up with it.

Spain, on the other hand, was much harder.  No computer on hand during the day, difficult to track and log food (nevermind counting the stupid carbs) while we were exploring Barcelona, and even though the clock said 6 pm, my body was screaming, "Midnight, woman!!!!!"  If it hadn't been for the Dexcom, I would have completely lost control.  But since that Bad Larry was keeping me between the lines - literally - it helped me stay reasonably even.

Upon our return, it was hard to get back into the swing, but knowing my next Joslin appointment is next Friday helped get my priorities straight.  Right now, I have three neat little spreadsheets on my Flash drive, with 100% of the blood sugar results and about 70% of the insulin doses and food logs intact.  Chris is helping with my food and calculating carbs for me so that there isn't so much SWAG bolusing.  This, my faithful readers, is flipping progress for this girl. 

My 7 day machine average is down to 125 mg/dl.  My 30 day is 130 mg/dl.  This is with fewer highs and fewer lows (aside from a few episodes while traveling), which makes me feel more confident that I'm truly holding steady and not just averaging out.  I feel sickly when my blood sugar is 180 mg/dl, which means I'm becoming more sensitive to highs and also not as used to them.  (A major plus.)  My A1C came back at 7.1% last time - a .5% drop from the time prior - and I'm certain that next week will show even more improvement. 

I'm not messing around.  I can't.  I'm on a mission.  :) 

Another Stupid Note:  I'm not posting these numbers to brag.  Or to elicit criticism.  For me, these numbers are - for the most part - an improvement and I am using both Joslin and SUM as my tools for accountability.  So when you see the graphs and you see my machine average, don't think I'm inviting your commentary on my actual results.  Your diabetes may vary, and mine sure as hell does, too.  Cool?  Cool.

So next week, I'll toddle off to Joslin with four spreadsheets crammed with information and hopefully a cool head.  Chris and I will talk to them about making changes, and I'll leave feeling more in control.  Even if the numbers don't improve as fast as my attitude towards them, I still need to move forward as efficiently as possible.

Good control is RIGHT on the horizon.  I can feel it.

August 19, 2009

The Lows in Spain Stay Mainly on ... Me?

As I mentioned yesterday, the trip to Spain was lovely, but fraught with lows.  I'm not sure what caused what, but between the six hour time change, the excessively late nights and the corresponding late mornings, and spending hours walking around the city of Barcelona - my glucose levels spent a lot of time in the trenches.

Chris and I brought three big jars of glucose tabs (in grape, raspberry, and tropical flavors, of course) and four packages of Mentos candy with us for the trip, assuming this would be enough.  But I couldn't have anticipated the lows that followed us from landmark to landmark.  Aside from the initial high after the plane took off (Oh Kerri, you don't like to fly?  Hmm ... you've never mentioned that before!) and a spike after my mid-week insulin pump set change, my blood sugars were low the majority of the time we were traveling.  Nothing earth-shattering, but more a constant trend of 60 - 80 mg/dl, which sounds good in theory but when it's the result of constantly popping glucose tabs, that's a bit much.

Especially in the airport.

Leaving from JFK to head to Barcelona was fine. Our flight left NYC on time and things went smoothly, schedule-wise.  But coming home?  Completely different story.  

According to our itinerary, we had an hour and fifteen minutes between our flights from Barcelona and from London, so we thought we'd have enough time.  But when the plane left Barcelona 30 minutes late, we knew it was going to be a scramble to make our connection.  In Heathrow.  Which has to be the most confusing, unstructured airport I have ever visited in my life, more like a mall with airplanes thrown in as a bonus, instead of being a well-organized airport first.

Our plane landed in London and we had about 40 minutes to make our connection.  We stood in line to go through security again, and the Dexcom started to wail.  I dug it out of my bag and saw a blood sugar of 102 mg/dl and two double arrows pointing straight down.  (You can guess what that means.)

"Oh darn it gee wilikers, I'm going low," I said to Chris.  (Note:  This is the edited, non-Yosemite Sam version of our exchange.)

"You have glucose tabs?"

"Yup.  Chomping now."

We went through security - down to 23 minutes to catch our flight.  Raced to the board where the flights gates were being announced and searched for our flight.

"Shit, we're all the way across the airport.  We've got to book.  Keep eating, okay?"

So we start moving fast.  The Dexcom is continuing to vibrate, and I'm eating glucose tabs while dragging my suitcase behind me, my purse bouncing off my hip as we run. 

"You okay?"  Chris calls back to me as we're running while on the moving sidewalk.

"Sort of.  Are we close?"  Glucose tab dust covers my hands, leaving imprints on the railing of the sidewalk.

"Sort of." 

Time is tight.  So we start to move as quickly as we can.  We run until we get to the American Airlines gate and Chris goes to the counter to check us in.  I take my meter out of my bag with shaking hands and test, only realizing then that I've been crying.

30 mg/dl.

Oh that's lovely.

And then the panic hits with intensity.

"I'm 30.  I need something fast."  My mouth is dry and the idea of trying to consume glucose tabs with vigor makes myThank goodness for American Airlines kindness. throat close at the thought.

"Juice.  There's a machine.  Sit here, baby.  Sit and eat the tabs and I'll get juice.  You'll be fine ..."  He moves quickly to sit me in a chair, puts the bottle of glucose tabs in my hand, and runs to the Minute Maid vending machine.

Which only takes British pounds.  Not American dollars.  Or Spanish Euro.

"Gosh."  Chris said.  (See above comment re: edited version.)

I'm not sure what happened next.  My brain was in a complete fog and I'm sure I looked frightful to the unknowing outsider, surrounded by suitcases and crying and eating odd little dusty discs and looking as though I was jilted at the airport.  I know Chris ran to the check in desk and explained "medical emergency" and "needs juice from the machine" to the man in the American Airlines uniform.  I know that this stranger gave Chris all the money he had in his pocket as quickly as he could, without asking questions.  I know Chris said "thank you" as he ran back to the machine and I sat on the chair, still trying to choke down glucose tabs.  I know that a bottle of orange juice was in my hands seconds later, and I know that the plane was boarding and we were treating a really miserable low in the airport.

Twelve minutes. 

"Test, baby."

51 mg/dl. 

"You're coming up.  See?  That's already higher."

Still in a fog, but beyond pressed for time, we gathered our bags and started down the gate towards the door of the plane.  We were among the very last people to board.  I wasn't as much of a mess but I was wiped out, my whole body trying to recover. 

"Thank you," Chris said to the American Airlines employee who gave us the money for juice.  "Here, please take the money back."

The guy was behind us in line and smiled gently.  "No, it's fine.  Please.  I'm glad you're okay.  Don't worry."

I took the coins from Chris and pressed them into the employee's hand.

"Thanks very much.  But you might need this change.  You know.  For another diabetic who really needs a helping hand."

He took it.  We boarded.  And headed home.

August 04, 2009

Biking Block Island.

After the loooooooong day in Boston on Friday, I needed to work off some stress.  So Chris and I decided to 'sail away on the Block Island ferry.' (This is the theme song for the ferry, but I couldn't find a YouTube clip or anything.  If someone can find audio proof of this song, please send it to me!  Lyrics are "Sail away on the Block Island Ferry, take a trip back to carefree times.  Sail away, Block Island awaits you.  Just leave your troubles behind."  And thus ends this digression.)

Our ferry ride over was a little choppy, and we were ... green by the time the ferry docked at Payne's Dock, but we shook off our seasickness quickly after breakfast at the Mohegan Cafe.  Then we rented some dented bikes from the shop by Ballard's (I left my bike back in CT ... foolish Kerri) and got on the road.

I must admit:  July was a tough month for me, exercise-wise.  I was traveling way more than I'm used to and only made it to the hotel gyms a handful of times.  My own gym membership at home went virtually unused, save for a few ragtag workouts.  But I thought I was still in relatively decent shape, so I didn't think the bike ride would kick my ass.  I was even grinning before we attempted the hills, all hopeful. 

Oh how stupid I was. 

The first leg of the ride was all uphill.  We followed Spring Street straight up to the Southeast Lighthouse and by the time we reached the top of the bluffs, I was dying.  DYING.  My legs were wobbly and I was panting and my blood sugar was plummeting.   Thankfully, I'm a nerd and I chose the bike with the little basket on the front, and since I didn't have a small dog to stuff in there, I instead had a secure place for glucose tabs.  Which I ate.  Happily.  Next to the Southeast lighthouse. 

Exhibit A:

Tabs by the lighthouse.  Of course.

We hung out for a while at the lighthouse because my numbers just wouldn't budge, so I are a few more glucose tabs near the bluffs. 

Exhibit B:

Tabs on the bluffs, yo.

The Dexcom (also stuffed into the bike basket) finally stopped BEEEEEEEEP!ing and a quick test confirmed a number finally in the triple digits, so we ventured on our way.  Thankfully, the way down was easier on our legs, and we stopped at the Block Island airport to take a break and watch the teeny, tiny planes land.  (Note:  No.  I will never go on one of these planes.  They hold four people.  Including the pilot.  Oh hell no!)

Water Street in the background.

It was fun, though.  Chris and I had a great time - hard not to in one of my favorite places.  Even though my legs were burning and my wrist was a little aggravated from the ride, it was awesome to be out in the sunshine, taking in the sights of a beautiful place like Block Island as we whizzed by on our bikes.  (We also found the same pond three times.  Sad senses of direction, we have.) 

I already have a bike, but it's been sitting in our storage space for the last few years.  I used to ride all the time when I lived in RI because my apartment was across the street from a beautiful eight mile bike path.  Now I think I want to bust that thing out and toddle around town on my ridiculous bicycle with my equally ridiculous helmet (thank you, Nicole), maybe with Siah in a basket on the front. 

Or maybe just my meter would be more realistic. 

Either way, it was awesome to be outside, far from the glowing computer screen, pedaling away my stress on the summer streets of Block Island.

August 03, 2009

A Diabetes To-Do List.

I stood there with my best friend as she rubbed her pregnant belly.  The whole waiting room was filled with these lovely women and their round beachball bellies of varying sizes.

And I felt oddly self-conscious with my lack of roundness.

Last Friday was my first official appointment at the Joslin pregnancy clinic.  It's located at Beth Israel in Boston and is a beautiful hospital, different from the Joslin Clinic across the street that feels like home at this point.  I'm not pregnant, and we aren't trying to become pregnant YET, but this appointment puts things into full swing to bring me to a safe level of pre-pregnancy health. 

Sigh.  This all sounds redundant, even to me.  I've talked the Big Talk before.  "Oooh, look at me!  I'm going to really wrangle in my numbers and have an A1C you can bounce a quarter off!"  And I'm all gung-ho for a week or two, armed with my little log book and my good intentions, but within a few days, Other Things start to creep in.  Like work.  And stress.  And getting to the gym.  And social stuff, like hanging out with my friends and going to RI on weekends.  Eventually my good intentions end up in the spin cycle, and my log book starts to gather dust.  My workload piles up.  And my stress levels skyrocket.

I'm so frustrated because I want to have a career.  And I want to have a baby.  (I'd also love some tight control of my diabetes, too.)  These things would be excellent, but it feels like tightly managing type 1 diabetes is a full time job unto itself.  Slacking off is easy, and frustrating, and not healthy for me or any baby I'd like to have.   

But I also realize this is one of my biggest hurdles when it comes to pregancy planning - the whole "sticking with the pre-program."  This becomes more and more obvious to me when I go back and re-read old blog posts where I'm so excited to get back into better control, only to be derailed by those Other Things.  So during the course of my appointments on Friday with the endocrinologist, the registered dietician, and the certified diabetes educator, I admitted my faults freely.

"I need help being held accountable."  

They didn't quite hear me at first.  "We can do some tweaking, and in a month or two, we can revisit your A1C and see if it's lower and then we can give you the green light for pregnancy."

I knew I needed more than that.  I had to be completely honest. 

"Guys, I really need to be held accountable.  I know this sounds crazy and I seem very compliant, but I have trouble following through.  I'm great out of the gate, but I lose steam after a few weeks and I'm at the point where it isn't good enough anymore.  I'm out of excuses.  And I'd really like to join the ranks of those pretty pregnant ladies out there.  Please help me?"

And they listened.  We spent the rest of the day working out a plan for me.  One that will actually make a difference.  One that will get me there.

I'll be in Boston every three weeks until I'm pregnant.  This is a huge commitment but I need to make diabetes a priority without fail.  I want this.  I want to succeed at this more than anything else.  I'll have my blood sugars logged for those three weeks and we (my husband and my diabetes team and I) will all review them together.  Chris is in charge of my meals, in that he'll be helping me plan my day, food-wise, and he'll be counting carbs and measuring things for me. I'll be eating relatively similar items every day so I can manage the trends and control them.  I'll continue to test all the live long day and wear the pump and the CGM, but I'll actually use these devices to their fullest potential, instead of just going through the motions. 

With these appointments spaced just a few weeks from one another, I hope I can stay tuned in to intense diabetes management for three week stints.  Being sent out for three or four months is too much for me.  Obviously, because I burn out well before my follow-up appointments.  I just plain can't pay rapt attention for that long.  But three weeks?  Can I do that?

I have to do that. 

I will do that. 

It's a long way down from here.

July 29, 2009

PatientBloggers at BlogHer09.

The catalyst that brought me to BlogHer was a conversation back in October 2008 with Lisa Stone.  Lisa and I met at the BlogHer Outreach event in October and I talked with her about the patient blogging community and how we're truly changing our health outcomes through blogging about our illnesses and connecting with others.

Fast-forward to July 2009, when the PatientBlogging panel debuts at BlogHer, with Jenni Prokopy, Loolwa Kazoom, Casey Mullins, and me on deck as panelists, with Mr. Lady as our moderator.

I will admit to being very nervous before this panel, because it's one thing to write online behind the protection of a computer screen - another thing completely to speak candidly before an audience about our personal health issues.  But sitting there, in front of people who actively sought out the PatientBlogger panel, and elbow-to-elbow with some terrific patient bloggers, I felt like it was almost instantly comfortable once the discussion started.

(It helped that my fellow medbloggers Rachel, Lee Ann, and Kim were right there in the front row.  Familiar faces ease nerves!) 

The PatientBlogger panel at BlogHer.  More on this photo later.  Sorry I'm not smiling.  :)
The PatientBlogging Panel at BlogHer '09.  For some reason, I'm not smiling.  But I was v. happy.

Jenni opened up by talking about the highs and lows of patient blogging, including the notion of being defined by our diseases.  Easy for me to chime in there - "That's actually the tagline of my blog, and I think it's important to remember that diabetes is definitely a part of me, but it's only one part of me.  I'm also married, but that doesn't mean I'm only someone's wife.  There are many, many parts to the whole.  Diabetes is just a part of me."

We talked about what it was like to connect with people who "get it."  About connecting both on and offline with people who share our experiences and sharing best practices while making it clear that we aren't offering medical advice.  

"Big, fat disclaimer, guys."  I kept repeating myself, when asked how we deal with people thinking we're offering medical advice.  "It's not medical advice.  We aren't perfect. Just because we’re patient-bloggers and we’re writing about our illnesses, it doesn’t mean we’re awesome at managing them. I’m writing about diabetes every single day, I’ve been diabetic for 23 years, and I don’t have perfect blood sugar results.”

Loowa talked about her experiences with chronic pain, and how she battled the healthcare system to get the care she rightly deserved.  As a panel, we chimed in with our similar stories of what being a patient in this healthcare system is really like, from Casey fighting for insurance coverage for injections that would preserve the positive outcome of a previous surgery to Jenni talking about how her condition (fibromyalgia) isn't even recognized as legitimate by the medical field at large.   

It was like being in someone's living room, having coffee, only we were miked and people in the audience raised their hands to ask questions.  But it was intimate.  Comfortable.  We, as a group, were protected within that room.  People spoke their minds, and let themselves cry, without fear.

So much that Ree of the Hotfessional boldly took the microphone, introduced herself, at at the gentle urging of Mr. Lady (okay, Mr. Lady offered to make out with her but work with me on this, I'm in the moment), pulled off her wig and exposed her beautiful bald scalp to the room.  "I look like I have cancer, but I don't."  Ree lives with alopecia and despite her assertion that she doesn't experience "symptoms" of her illness, she is a professional woman in a professional environment, dealing with being bald as a woman.

"No one has seen me without this, except my husband and my children."  She was crying, along with almost everyone else in the room who was watching her in awe.  "The way you react mentally to your life with your illness is your own business, but putting it out there, you will get the support you want.  It will do wonderous things for you."   

Sometimes it's hard for us to blog about our diseases.  It can be really emotionally intense to log on to your blogging platform and post, for the whole internet to scrutinize, the real struggles we experience as we live with chronic illness.  Sometimes readers lash out and attack us for our opinions or our care regimen.  Sometimes we are forced to have thicker skin than we'd like.

But sometimes blogging about our conditions is what gets us through the day.  Sometimes it's the email from someone saying, "Hey, me too," or "You helped me feel stronger today."  Sometimes it's the comments from people who really understand what it's like to live with these diseases.  And sometimes it's simply knowing we aren't alone.  And that we never have been alone.

And now, with the support and love of our communities, we never will be alone again.

Patient blogging ... that's some powerful stuff.  This was an inspiring experience, I'm honored to have shared this panel with such inspiring women, and I'm humbled to be part of this incredible community.

July 28, 2009

Charlie and the Twitter Factory.

I have a lot to catch up on, including a post about Lee Ann and I braving the Indiana highways and then the BlogHer conference, but let me just say this first:  I like Charlie Kimball.  I like him as a person, as a fellow diabetes advocate, and as a race car driver because, really, that is just damn cool.  So there's my big disclaimer:  I like Charlie.  (I even have a post ready to write about meeting up with him at Friends for Life a few weeks ago.)

So I do not like to see Charlie, the guy, under such attack for the @racewithinsulin Twitter account.  Plenty of bloggers are up in arms about the Novo/Kimball union and its steps into social media, like John Mack from the Pharma Marketing Blog.  I felt a little protective of my fellow PWD, which prompted me to do a little investigating.  I wanted to know how Novo, the company, feels about this whole Twitter/marketing/Pharma thing.

So I asked them.

Charlie Kimball and Kerri Sparling.  Dressed almost identically.  Weird.

Ambre Morley, Associate Director of Product Communications at Novo Nordisk and I met at the Friends for Life conference, and I told her that I was concerned about the backlash towards Charlie and the branded Twitter account.  "I have a ton of questions, and I know some of the PR people who are questioning the account might do well to hear the answers.  Like why the account doesn't follow anyone.  And what's the deal with those blatantly branded Tweets?"

She agreed to answer my questions.  And since Novo is the first I can think of to jump in with a pharma-branded Twitter account with a "real face," I wanted to hear the answers.  (Note:  All links to pages within the answers were added by me.)

Kerri:   Charlie is a valued member of the diabetes community, so I can understand why you guys chose to partner with him. But what made you decide to start a Twitter acct?  

Novo:  When we decided to partner with Charlie, we explored a number of different opportunities. He was already "tweeting" personally, however, when he asked about tweeting about our partnership, which includes the insulin he takes everyday, Levemir and NovoLog, we knew had to figure out a way to do it right. We didn't think it was right to ask him to put the prescribing information on his page and monitor every time he tweeted about diabetes. So we created a new account that we could ensure met all regulatory guidelines. Why Twitter? He was already doing it, so we wanted to create something that would easily fit into Charlie's lifestyle.
 
Kerri:  Why are Charlie's personal Tweets and his Levemir Tweets exactly the same?  
 
Novo:  It's important to understand that Charlie does all of the tweeting, both on his personal page and on the Novo Nordisk Race with Insulin page. It's up to him. They aren't always exactly the same, but where convenient and appropriate, he uses the same tweets, as it's probably easier to copy and paste. There are times when the tweets are different.
 
Kerri:  Does Charlie write the Levemir Tweets or is there an editorial vetting proces? Can you explain the thoughts behind the "branded" Tweets?  
 
Novo:  Charlie writes all of the tweets, including the Levemir and NovoLog branded tweets.  We provided him with instruction for how to tweet about the brands and comply with pharmaceutical regulations. So, anytime he tweets the words Levemir or NovoLog, a link to the product prescribing information has to be included.
 
The reason? Take a look at the page from your computer. You see the patient safety information on the left, along with a link to novonordiskcare.com on the right, which contains all of the prescribing and other important information. The challenge is, because the majority of Twitter users read and update their accounts from mobile devices, we knew most people would not see that information if Charlie wrote a tweet. That's why the prescribing information is there. It's required. It's similar to when a company does any stand-alone promotion of a product, that information has to be there.
 
More importantly, it's important to understand that the branded tweets aren't random. Charlie takes Levemir and NovoLog, so when he decides to tweet that he just took his insulin, he really just did. We don't believe a pharmaceutical company has tried to do branded tweets before, much less with a spokesperson who takes the insulin. But we're still learning and trying to figure it out. It's been a fun and definitely interesting time.  
 
Kerri:  Why doesn't the @racewithinsulin Twitter acct follow or reply to anyone? What kind of regulations must be in place for a Twitter acct of this kind?  
 
Novo:  While Charlie is the face of Race with Insulin, it is a corporate account for Novo Nordisk.  At this time, we aren't able to follow anyone, as pharmaceutical usage of social media is very regulated and we want to ensure we do it right. This is just the first phase and as we grow and learn, hopefully we will be able to follow people in the future. We are also open to suggestion.

After speaking to you, we took your advice and set up an e-mail address for the page. (Editor's Note:  I suggested that the account would seem a bit more accessible if they, at the very least, had some contact information.)  You should see an image update in the next week with the new address. But as I know you know, social media moves in real time and we haven't quite caught up to that speed in pharma. We're making baby steps but we're trying to stay in the race.
 
Kerri:  We know you guys are breaking new ground with this Twitter account, so what should we expect as part of your growing pains?  
 
Novo:  We're still learning. We want to do a lot, but we also understand that the pharmaceutical industry is the most heavily regulated in this country. We won't be able to do things as easily as say computer or food companies, but you have our commitment that we do plan to try to engage. Stay tuned.  
 
Kerri:  How has Novo felt about the blog backlash to @racewithinsulin, and how has Novo moved to protect themselves and Charlie?  
 
Novo:  If no one talks about what you do, you probably haven't made much of an impact. That said, it would be nice if the talk was all positive and more importantly, true. We encourage people to ask questions and give us an opportunity answer. We're pretty transparent about our challenges and open to discussion about any ideas to make it better. There were some false assumptions gaining traction, but that's also the nature of this business. You can never please everyone, but you can only hope that social media will adopt some of the principals [sic] of traditional journalism and report the facts, before making assumptions. We're working to move quicker to respond but also encouraging anyone to just ask. As for Charlie, he has been great. He's in a profession where he already has a lot of attention on him and is working with us to help make the page a success.

Kerri:  What do you want the Twitter community to understand about the aims of @racewithinsulin?
 
Novo:  We are very happy to be working with Charlie and wanted to reach as many people as possible. Twitter was an application that Charlie was already using and we wanted to find a way where he could continue to do so and incorporate our relationship.

It's still new and we're just getting started, but we hope to continue to find new, innovative ways to continue to reach everyone with his powerful message that diabetes does NOT slow him down!

*   *   *

I'm glad Novo went out on a limb and dove into the social media space, and I'm also glad that they agreed to answer my questions.  Thanks, Ambre!  What are your thoughts about Pharma in the social networking space?  Don't just say "Hey, they're doing it wrong!"  If you think it's so wrong, what would make it right? 

July 27, 2009

Wait, You Wanted Pictures??

Wait, what's that?  You want to see pictures?  Oh hell yes I have pictures.

This event offered more than interaction with a seemingly open-minded Pharma company.  This event gave me the opportunity to meet and reunite with some of my favorite bloggers in the diabetes space.

Here's the standard shot that the crew at Roche took of all of us.  We look downright jolly.

Jolly bloggers

The night before our meetings with Roche, we went down to the hotel bar and hung out for a few hours (before getting kicked out, sort of, and ending up in Christel's room until the wee hours of the morning and being harassed by "Tim," who has been explained in several wrap-up posts from other bloggers).  

Here are three very special members of my diabetes family, even though this was my first time meeting Scott in person:

We are family.
 
But, of course, every family photo session has it's awkward moments where the big guy tries to toss the tiny blond in the air.  The Ninja and the me could only laugh and end up captured in awkward, eyes-closed grinniness:

Christi gets tossed.

There are plenty of wonderful people I finally connected with, but without formal photographic evidence.  Like Will from Life After DX, who I've been reading for years and am always inspired by.  And Bernard (spelled Bernard) from The Diabetes Technology Blog, who I should have met years ago but until this past week, had never had a chance to hug in person.  I had the honor of meeting Crystal (aka CalPumper), Christopher Thomas, Chris Bishop, Ginger Viera, and Brandy Barnes for the first time, too.  And there were also the several bloggers who I have had the pleasure of meeting before, like Fran, Amy, Manny, Christel, Scott Strumllo, LeeAnn, SuperG, Scott King, Kelly, Jeff, Gina, Riva, Kelly Close, Allison, and Bennet.

Also, my old friend Sandra Miller was in attendence, representing with Bennet Dunlap (again, I know!) and Jeff Hitchcock as the parents of children with diabetes.  David from Diabetes Daily was also there, on behalf of his wife Elizabeth (who is type 1).  Charlie Cherry and David Mendosa represented for the type 2 crew, and Kitty Castelinni stood as one of the few recipients of a pancreas transplant.

So we all met up. 

And goofed off.

A potluck of bloggers ... and this isn't even everyone.

Including Bennet showing off his fabulous pink camera (ooooh!), a late-night packy run, Kelly sharing stories from her diabetes past that made me want to give her a huge hug, a Blair Witch moment and, of course, Christel throwing down to "Tim," a random caller who was intent upon snuggling with Mr. Diabetic Rockstar.  Needless to say, all 4'11" of Christi kept Tim from making any fast moves, and to say that Christopher owes her big time is a gross understatement.  ;)

(Sidenote:  David, I still think it was you who called from the bathroom, but the world may never know the real truth.)

It was a true potluck of diabetes bloggers, representing from all sorts of different demographics.  Unfortunately, there were several bloggers who were missing from this group, and I'm hoping - no, damnit, I'm demanding - that there is an invitation sent to more members of our influential blogging family for any future meet-ups.

These people are my friends.  They're the people who understand what living with diabetes is really like, and they are the external support network I have been hoping for since my diabetes diagnosis in 1986.  So thank you to Roche for giving me the opportunity to say hello to, and hug warmly, the people in this community that I cannot wait to see again.

More of my photos are in Flickr, and there's also a D-Blogger Summit photo pool where you can grab the best of the shots!   

Roche Diabetes Summit: SUM Edition.

You have already read some great wrap-ups of the Roche Diabetes Blogger Summit from some of my fellow bloggers - Amy, Manny, David, Gina, Christopher, Bennet (Note: Mr. YDMV's updates are fictional.  Well, mostly.), and Sandra.  I just wanted to chime in with my thoughts and add my photos to the collection.  :)

We met up in Indianapolis on Wednesday afternoon, after I had flown from LaGuardia to Detroit and then to Indianapolis.  (Yes, I took two flights so that I could avoid taking the itsy bitsy plane that Roche originally had scheduled me on.  The travel people at Roche were very patient and understanding regarding my travel issues, and I really appreciate their compassion.)

But apparently my fear of flying wasn't kept within the travel coordinator circle, as several people from Roche mentioned at the dinner that "Some of us even traveled despite our fear of flying," and heads slowly turned towards me, to which my only xanax-laced response was "I walked."  

Good thing I don't mind being laughed at.  Or with.  More on that later.  

I'm no fool - part of what Roche wanted was to be talked about in the blogs.  Hence why they asked many of the diabetes bloggers to visit their headquarters and brainstorm about social networking and Pharma involvement.  But Roche did this right - they paid for our travel, they paid for our hotel, they made us feel as though we were valued guests, and they listened when we offered our opinions.  We didn't travel on our own dime and feel taken advantage of, but instead appreciated.  That's a good start, in my book. 

It was really a groundbreaking sort of event, with Roche having the balls (go ahead and quote me on that, Rodger the Social Media Warlord) to invite a pack of opinionated bloggers into their house to talk frankly about social media and Pharma - specifically, THEIR Pharma.  We talked about ways that Pharma can appropriately enter the social media space without being received by a mob with torches and pitchforks.

In my opinion, Pharma needs to simply embrace the fact that transparency, honesty, and being open to feedback can make a huge difference in how they are perceived by their patient base.  For Roche to sign on to a social networking site by creating a fake profile or pretending to actually live with diabetes, well that's just plain stupid because we'll sniff them out in a second and destroy them.  However, if Roche, or any other Pharma crew, is willing to put a face to their company and leap into social media by saying, "We aren't living with diabetes, but we want to help improve the lives of people living with diabetes - that's why we are here and that's why we want to be engaged" ... that kind of disclosure and transparency will go a very long way.

I gave the example of Albert Chen, a member of the Agamatrix team who, with grace, honesty, and class, joined the diabetes blogosphere with his blog "What Is Diabetes?"  He said, right in his bio, that he didn't have diabetes, but wanted to better understand the community he was working to serve.  That, Pharma companies who are reading this, is the way to work with the diabetes online community.  Get to know us.  See that we are more than just the sum of our co-pays.  Remind us that Pharma has a face, and more importantly, that you remember we are people, too.  

The Roche team didn't always directly answer the questions, but I can understand that "Why aren't strips cheaper" isn't a question that they can answer without sounding like a business.  However, they need to understand, and always remember, that their business is our life.  So while that chasm remains wide, I think this was an important step in beginning to bridge that gap.

The gap - we're making efforts to bridge it.

July 08, 2009

Diabetes ... is a Game?

The idea of creating a game about diabetes both intrigues me and creeps me out a little bit.  Diabetes is a game? I guess after an evening of "WHY 200?  WHY?!!" I'm not feeling so light and fluffy about diabetes.  But I see the potential for kids to learn about diabetes and its management through the use of games, so I'm all so for whatever gets good information out there.  And over the last few days, I've come across two particularly interesting games, thanks to reader alerts, aimed at kids who either have diabetes or have friends with diabetes.

The first game is on the Nobel Prize educational games site and it's cleverly called The Diabetic Dog game.  (Wee bit short on imagination once they got to the naming part, I suppose.)  I will admit - I played this game for at least 15 minutes and I appreciated the cuteness of the doggy. 

The Diabetic Dog Game

As a "caretaker," I was instructed to keep my diabetic doggy (named, in my profile, "DoggyPants") happy (by petting him), well-fed (by purchasing food for him), getting him to exercise (by walking him), and keeping his blood sugar in check by giving him insulin injections.  Keeping an eye on the bar at the bottom left of my screen let me know what DoggyPants's blood sugar was, and I could feed and dose him accordingly.

(Sidenote:  Having that bar gauge with his blood sugar in it sure helped me figure out what I was doing, and I wondered if the developers of this Diabetic Dog Game realized how they're helping further the case for continuous glucose monitors.) 

Overall, I liked how this game showed the importance of insulin, food choices, and exercise as the cornerstones for good diabetes management, and it didn't tout insulin as "a cure."  Basically, all you do is chase this little puppy around and feed him or dose him or walk him.  Constant cycle of redundancy, only the results aren't predictable.  Kind of like real life.  :)  

The other game I have been receiving reader alerts on is the Didget from Bayer.  I haven't seen this game in person, but according to the word on the street (read: their website), "The Didget blood glucose meter from Bayer is the only meter that plugs into a Nintendo DS or Nintendo DS Lite gaming system to reward children for consistent testing."  

The DIDGET.  IN ALL CAPS!

So it's an actual meter that snaps into the Nintendo system.  (It appears to be, or be completely identical to, the former "GlucoBoy" from a bit ago.)  Honestly, that is pretty darn cool, and I wish that kind of "fun" was available when I was testing my blood sugar as a kid.  Hell, I'd like to have that kind of positive reinforcement NOW, thank you very much.  

"This unique meter helps encourage consistent testing with reward points that children can use to buy items within the game and unlock new game levels. And, since the DIDGET meter is based on Bayer’s trusted CONTOUR™ system, you know you’re getting a meter that’s reliable." They are also building a community for kids to "hang out in" virtually, comparing notes.  Of course, since it's Bayer, they need to slide in their personal product endorsement, but they have the right idea.  Test often, get rewarded for keeping tabs on your numbers, and maybe Nick Jonas will show up at your house and give you a hug.

That last part?  A lie.  But Bayer is working its way into the hearts of kids with diabetes, and as a former kid with diabetes myself, I would have appreciated that kind of innovation as part of my childhood with this disease.  From what I can tell so far, this meter is being marketed towards diabetics in the UK, but hopefully there will be a United States counterpart.  With mg/dl readings.  Because doing conversions when low?  Not so easy.

So there you have it. We've come a long way from that game with the elephants or the other one about the Escape from Diab, and hopefully more efforts will be made to engage kids - and adults! - with diabetes.  Positive reinforcement is hard to come by in this whole diabetes mess, so every little bit helps.

July 02, 2009

One Lump or Two?

Like I wrote a few weeks ago, "Even though I do not like the disease, there are some diabetes-related simple pleasures that make me smile." 

But on the flip side of that, there are some diabetes-related things that make me grimace.  (Not Grimace, but grimace.)  And when I'm feeling down about the hard parts of managing this disease, I often turn to humor to lift me back up.  (For me, a little gallows humor goes a long way in keeping me from really falling into a depressive state.  It seems like a counterproductive idea, but it really helps me.)

This is where Haidee Soule Merritt's book comes in:  One Lump or Two?  Her book more than resonated for a 20+ year diabetes veteran like myself.  It's taken me a long time to build up this much amusement at a disease that's trying its hardest to take me out, but now I'm in the thick of the smirking-despite-the-chaos.  

As I read through her book, I laughed.  I laughed and nodded my head in agreement, thinking, "Oh hell yes, I hate those geyser fingerpricks."

How many times has this happened to you??
Who hasn't this happened to?  (Image credit:  Haidee Soule Merritt)
 
I snicked despite trying to be classy when I saw the one about low blood sugars after sex.  (Trust me, not fun.  And also, awkward as hell.)  

Low blood sugar after sex.  Oy.
Been there.  Done that. (Image credit:  Haidee Soule Merritt)

Diabetes isn't easy.  Neither is laughing at it.  But laughter, finding something that alleviates some of the anxiety and fear that comes with a chronic illness, can make such a huge difference in health.

If you want to order your own copy of Haidee's book, visit her website (and enjoy the duck sounds on the buttons, because they quacked me up).  As you thumb through your copy of One Lump or Two?, you'll find yourself smirking with understanding, too.    

June 30, 2009

Penguin Truck.

We're planning for a pregnancy, so I've been working tirelessly to stalk my blood sugars.  I'm wearing the Dexcom, testing regularly, and really aggressively chasing highs and lows in pursuit of that nice "between the lines" look on my blood sugar graphs. 

So when I changed my infusion set last night and neglected to take the 1.0 u bolus in anticipation of the high (which seems to be the only way I can keep the highs at bay after a site change), I knew I was in trouble.  Sweaters on my teeth, and my tongue thick with dehydration, confirmed by the 254 mg/dl on my meter.  I cranked up a correction bolus and sent it cruising in, along with some frustration and a few choice curse words. 

A few hours later, I was on the steady but seemingly safe decline, with the Dexcom keeping tabs and my meter serving to confirm.  No worries.  I ate a snack (cottage cheese with some frozen raspberries) before bed and snuggled against the pillow (read: cat) at a blood sugar of 187 mg/dl.  Higher than normal, but I knew it would continue to come down.

Didn't anticpate the 3:30 am wake-up call of BEEEEEEEEEEP!, though. 

I have no idea what my blood sugar was.  The Dexcom showed me only as "low" and I woke up crying, for some reason.  Chris was next to me, fast asleep, but I didn't wake him up.  I don't know why.  A bottle of glucose tabs sat on the bedside table but I didn't reach for them.  I don't know why.  The shape of my body was outlined in sweat on the bedsheet and my hair was sticky, and for some reason combing my hair down before I went to get juice took priority over eating something to correct the low. 

I don't know why.

I don't remember a lot of this low, and that scares me.  I was dizzy.  I was stupid for not waking Chris up and asking for his help.  I remember hearing the Dexcom wailing from the bedroom as I stood at the fridge in the kitchen.  I drank the juice directly from the carton, drinking well past my eight sips and gulpinThese guys can just go right to hell.g until I couldn't catch my breath.  Yet, I remembered to wipe down the floor to clean up what I spilled.  I don't know why.

Hitting that stride, hugging close to the center lane of 100 mg/dl, is really what I'm aiming for.  I've been doing better lately, so every time I'm way off target, I feel the symptoms too late for lows and very intensely for highs.  I know this is a signal that I'm in tighter control, but once I'm stuck in the spin cycle of high-to-low-to-high and back again, it's hard to climb out.  And a lot of time my morning number sets the stage for the rest of my day.  Last night's low blood sugar left me at 199 mg/dl this morning, and I still haven't settled back into range.  I feel frustrated, knowing my A1C is being drawn at the end of July.  But last night's events kicked my ass too thoroughly for me to focus on anything other than muddling through the day.

It's that pesky penguin truck again.  I hope the tire tracks aren't too visible this morning.  

June 26, 2009

The Faces of the Philly Meet Up.

The conference I'm speaking at this week is about social media and how pharma and patient bloggers can work together to benefit the patient community.

My main points are to drive home the fact that even though we might be perceived as "target markets" and "diabetes consumers," we are people first.  We're people before we're patients, before we're anyone's consumer base, before we're diabetics.

People.

And last night, I had the distinct pleasure of hanging out in Philadelphia's Black Sheep Pub with a bunch of people who just happen to have diabetes.   Sitting among all these shining faces (because, holy crap was it hot in there), I wished that Big Pharma was there with us to see the real people behind the diseases about which they create power point presentations.

The D-Bloggers Descend on Philly
 Hey Pharma!  See us!  We're your "target market!"

It was great meeting everyone last night!  Thanks for coming out in that heat, and I'm looking forward to seeing you guys again!!

June 24, 2009

Why I Wanted a CGM.

On my soapbox again.  Hello!I'm often asked about why I chose the Dexcom CGM over the Minimed, and I have plenty of posts here on SUM that talk about my experiences with the two devices:

And then fighting for insurance:

And after I had won insurance approval, Dexcom and I joined forces:

Phew!  But part of even starting this process was wanting to go on a CGM to begin with.  I'm often asked about the different continuos glucose devices and pros and cons of each, I get just as many questions as simple as this:  "What made you ready to go on a CGM in the first place?" 

I know that for going from injections to pump therapy, I was frustrated with the lows that were happening three times a week, and how my ex-boyfriend was constantly finding me motionless in the bed at 4 am, covered with sweat.  After 17 years of injections and after two years of an A1C that wouldn't budge, I made the decision to use an insulin pump.

After deciding to wear one medical device, it was easier to try another one.  A few years of pumping made me feel comfortable with the 24/7 attachment of a diabetes device, so when the continuous glucose monitors became more prevalent on the scene, my interest was piqued.  At the time, I was in a serious relationship, thinking about having children in the future, and realizing how my blood sugars still weren't running better, despite my increased education and effort.  It was time to try something a bit different.

With a CGM of any kind, there's a certain security that comes with it.  I feel more confident speaking at events when I can look at the graph on my CGM and see that I'm holding steady.  Same for getting in the car for long drives, or on a plane for a few hours.  After twenty plus years of only having snapshots of what my numbers were like, I now have access to the streaming video, so to speak, of continuous monitoring.

Yes, there's also the "Hey, you're a robot" component to this.  I can't lie.  When I look at my body and I see all these things stuck to me, in addition to the red dots of diabetes devices past, I feel a little overwhelmed.  But it's part of living with this disease. (Most of the time, I'm able to shake off the robot feeling and just let Chris call me Rosie.  Whoops - there's the digression.)  I actually feel okay with wearing two medical devices.  It's sometimes cumbersome and inconvenient, but for me, the pros outweight any cons.  I hear a lot of bad news about diabetes, about how this many years with type 1 can really cause a landslide of issues, about how life can be compromised.  And I don't want that. 

Regardless of what happens in my future, I want to make every effort to be as healthy as I can, both mentally and physically.  And I'm ready to keep trying.  That's why I blog.  That's why I raise awareness.  That's why I pump. 

And that's why I wanted a CGM.

June 18, 2009

Working On Working Out.

Way overdue on a new vlog post, but I was inspired by George's post yesterday about getting back on track with exercise.  So here's my vlog post about diabetes, working out, and what motivates me to move.

Some of my reasons are a little goofy, but I think whatever gets me to exercise is well worth laughing at myself a little bit.  What gets you to break a sweat?

June 16, 2009

Do I Have the Right?

Over the weekend, Chris and I (and his sister and dad) ended up in a harborside restaurant in South County, RI.  We stood in line and read the chalkboard menu until it was our turn to order from the girl behind the counter.

"What can I get for you?"

"Can I have an iced coffee?  Do you have iced hazelnut?"

"I'm sorry - we don't have hazelnut.  But we have snickerdoodle or french vanilla.  Either of those work for you?"

"Snickerdoodle sounds awesome.  Is that a syrup?  Is it sugar-free?"

She gave me just a quick look.  Not judging, just looking.  "It's definitely sugar-free.  Medium or large?"

"Large," I said, and she turned away to make my coffee and I saw the pink Animas pump clipped to the side of her black pants, the tubing sticking up all crazy. 

And instantly, I want to ask her a million questions. 

With the Dexcom and the Animas being integrated sometime "soon" and with my only pumping experience being with Minimed, I wanted to ask her how she liked the Animas.  I wanted to see how long she'd been diabetic and did she go to Joslin, too?  Did she know any other diabetics?  How long had she been pumping? 

I wanted to tell her that the tubing gets all crazy on my pump, too, sometimes. 

But do I have the right to make her diabetes my business?  Just because I write about it doesn't mean I have the right to grill her about her diabetes.  She wasn't asking me why I wanted to make sure the coffee was sugar-free.  She was just going about her business.  Did I have the right to poke into hers?  Just because she wears an "external symptom" of her diabetes in the form of that pink pump, did I have the right to ask her about it?

There have been a few times when a diabetes discussion was thrust on me without my invitation.  "Hey, what's that thing on your hip?" becomes this moment of advocacy that, while effective, wasn't what I wanted to do that day.  Sometimes I just want to order my coffee without being grilled about why I need to make sure the syrup is sugar-free.  Other times I'm blogging about the teeniest minutiae of life with diabetes.  I oscillate between wanting to be a diabetes advocate and someone who lives a quieter diabetes life.  Sometimes I don't want to talk about it at all.  That day, I didn't want to be an advocate.  (Or a pain in the ass.)  I just wanted to get some coffee and enjoy the day.

Maybe she doesn't want to talk about it, either. 

She made my coffee and added some cream.  I handed her my money. 

And I left without saying anything.

Do I have the right?

It's not always what we have to talk about.  There's way more to us than this. 

June 15, 2009

Old School Diabetes: Diagnosis.

I saw my niece over the weekend.  She just turned seven.  She had a bit of a fever and wasn't feeling very well, so when I saw her snuggled up on the couch under a blanket, she looked every bit the little kid she is.  Poor little peanut, hiding out until she felt better.

I remembered that I was about her age when I was diagnosed.

I found an old school photo from second grade, with me sitting next to my friend Bobby (who I still talk to, which is a very surreal experience, hanging out with someone I've known longer than I've known insulin injections).  I was diagnosed in September, right as second grade started.

Second grade, 1986.
I'm in the blue dress, second row from the bottom, third from the left.
Swinging my feet.  Not much for sitting still, even in second grade.

Over the last few days, I've been reading some emails from the CWD parents as they gear up for the Friends for Life conference in Orlando in a few weeks.  These emails are sent out to a whole mailing list of attendees, and somehow I ended up on the list with all the parents.  (Or maybe the list just happens to be mostly parents and I just happen to be an adult "kid" with diabetes.)  These parents are comparing notes and reaching out to one another, looking forward to other parents who understand what they're going through every day as they care for their kid with diabetes.

And I wish that my mother had this kind of support when she was dealing with my diagnosis over twenty years ago.  My mom had a lackluster team of doctors at the Rhode Island Hospital (where I went for a few months before going to Joslin) and Eleanor (the only other mother of a diabetic kid that we knew of in our town and the woman who just happens to be my local Dexcom rep), leaving her with little to manage the enormous learning curve.

This weekend, I went on a bike ride with my sister-in-law, my father-in-law, and my husband.  I had to remember to test beforehand, bring my meter, stash some glucose sources on several people, and monitor as re rode.  A lot of thought for maybe an hour long bike ride.  And it made me wonder what kind of preparation and worry my mother went through when she sent me out to play for a whole Saturday afternoon.  Lot of work on my mom's part just to keep things normal. 

I forget this sometimes, how many people are really involved in keeping me healthy. 

I need to call my mom. 

(Granted, my diabetes diagnosis hasn't kept me from doing much at all.  And it definitely didn't keep me from being ... um, a bit of a goofball.)

June 12, 2009

Community, Everywhere!

Earlier this week, dLifeTV did some filming for our upcoming new season.  And as part of a segment we're doing on online diabetes support, I had the chance to see Nicole Johnson again and to meet two members of the dLife community - Mark and Shauntaye.

Tune in to dLifeTV to catch these new shows!

We talked about our common experiences as people with diabetes, and how online communities have positively impacted our health.  I thought about all of us, writing our blogs and really sharing so much of our personal medical experiences, and how much this whole journey has helped improve my life with type 1 diabetes.  Our little community here has gotten so big.

I spent the better part of this week confirming travel arrangements for the next few months, and even though I'm not a very good (or calm) traveler, just knowing I'll have the chance to connect with more people who "get it" makes all the flight anxiety worth it.  I'm looking forward to visiting Philadelphia for a conference at the end of the month and hanging out with some fellow d-community members.  I cannot wait to go to Orlando in a few weeks and attend CWD's Friends for Life conference.  I'm excited for the Diabetes Summit in Indianapolis in July, and for the BlogHer event the next day in Chicago.  And I am so honored to be speaking at the BlogWorldExpo in Las Vegas in the fall.  Lots of travel for a cause I'm still so passionate about.

But damn ...  I'm going to need a bigger suitcase.  ;)

Since I started blogging four years ago, I've had the opportunity to meet many fellow diabetics, either through SUM or TuDiabetes or the JDRF or dLife.  We're a supportive and inspiring crew, and I'm really looking forward to meeting more of us "in person."

June 11, 2009

An Open Letter to Brett Michaels.

Idiot.Dear Brett Michaels,

Really?  Really?  I'm going to hope that you were misquoted.  I'm going to hope that maybe the reporter took your comments out of context and made you sound like an idiot, instead of you actually saying the following:

"Brett Michaels:  The only time it [diabetes] will ever affect you in bed is if you have extremely low blood sugar and you go into insulin shock, at which point you won't be standing up, let alone performing sex. However, I will sometimes hold off on the insulin, which will jack my blood sugar level up to the low 200 range. It's like how a prizefighter will want to go into the ring with his blood sugar levels high. It gives you the stamina of a bull. So, yes, sometimes I will endanger my own life to pleasure a woman."

(source:  Huffington Post

You dumb shit.  Brett, going low during sex is a pain.  I know.  I've had to stop for snacks, and I've had to stop entirely.  I've had discomfort and the inability to perform due to high blood sugars, too.  I've had sex while connected to my insulin pump, and I've also had to find ways to feel comfortable with sharing my diabetes with sexual partners.

But you, saying that you purposely run high "like how a prizefighter will go into the ring?"  Gives you "the stamina of a bull," you say?  You don't sound cool - you sound like a toolshed.  I was under the impression that high blood sugars are among the main reasons for sexual complications for diabetic men.  Are you hearing me, Mr. Michaels?  If you run purposely high, your manhood runs the risk of malfunction.  And stamina of a bull?  Pffft.

High blood sugars aren't steroids.  They're toxic and cause lethargy.  They are dangerous for a diabetic.  They make your breath smell like airplane glue, and telling a reporter that running high makes you shag like a rock star is a bit of a misleading statement.  (Are sure you're rocking these women as passionately as you claim?)

Dude, you are in the public eye.  You are among the very few celebrities who are living with type 1 diabetes.  I'm not saying you have to be Johnny Advocate, but don't spread misinformation.  Don't encourage some young guy to skip his injection in pursuit of being good in bed.  You know as well as I do that good diabetes control is what leads to strength and stamina.

You know better.

Or maybe you don't.

Best,
Kerri.

June 10, 2009

Blueberry Awesomeness.

There's stuff that's bolus-worthy.  New York style cheesecake.  Chai tea on a snowy winter day.  Wedding cake made out of red velvet with butter cream frosting.  These indulgences are worth draining my pump reservoir for, and almost worth the spike I try to, but don't always, avoid.

I've been very, very attentive to my diabetes lately.  Logging all these numbers, sporting the Dexcom, trying to manage stress levels, exercising ... whatever it takes to make me as healthy as I can be for the baby I want to have someday. But that wagon is hard to stay on all the time, and I have taken a risk or two in the last month.  Like a trip on the Connecticut Wine Trail with some friends.  And some pasta at Carmine's last weekend with my sister-in-law.  

Oh holy awesome.

And blueberry swirl cupcakes from Crumbs Bakery.

My diabetes control isn't made or broken in one bite of a fluffy, delicious cupcake.  Usually when I'm having a high sugar indulgence, I'm right on top of things, diabetes-wise.  I bolus aggressively to avoid the high and I watch that Dexcom like a hawk for any subsequent lows.  My management problems come more in the form of letting my numbers go untracked and pinging all over the place, letting highs creep up without corrections, then stacking boluses until I hit a nasty low, which I over-treat and rebound into a high ... you know the cycle.  It's not the "one thing" but more my inability to care for more than an hour or two.  The last few weeks of intensive management have been about keeping an eye on everything and not letting the cycle spin out of control. 

And it's hopefully working.  My machine averages are down, I'm seeing many hours straight of flat-lines on the CGM, and knowing my Joslin appointment is at the end of July keeps my mind on task.

Besides, it's not like I ate the whole cupcake.  I split it with Chris and I asked for the estimated carb count before I took a bite. 

But I did take the first, awkward bite. 

Whoops!  Cupcake!

And I did enjoy every other bite of it, too.  Go ahead and judge!  :)

June 09, 2009

Zombie Lows.

Weirdest dream.  Ever.The BEEEEEEEEP! woke me up from a dream about having my arm chewed off by a zombie that looked like Kevin James.  (Zombie dreams are common in my house, apparently.)

I wasn't sweaty and my skin didn't have that flushed, clammy feel, but my whole body was extra-sensitive and jittery.  Like being covered in sand, only every granule was touching a nerve.

For once, I didn't bother testing.  I knew I was low.  The Dexcom was howling from underneath the bedside table (where I must have lobbed it like a softball when it went off the first time.)  The display kept glowing "LOW."  I reached into the drawer of the bedside table and retrieved a tube of cake frosting.  Red.   

It's been a while since I've had a low in the wee hours of the morning.  I've woken up on the lower side a few times in the past several weeks (morning numbers in the 60's and 70's - too low for me), but there haven't been any low messes at 3 am. 

Until last night, of course.

Still unnerved from the Kevin James zombie dream, I consumed some cake frosting and let the sugar settle into my system.  It was absolutely silent -  not a sound coming from the roads outside or the cats milling around in the living room - and my brain kept screaming for more sugar.  

This is where I get stupid every time.  The frosting I ate was enough to cover my reaction.  After I tested, I saw that I was 45 mg/dl.  I'd already eaten about 20 grams of carbs, which would have brought me up nicely to about 100 and left me there.

But I had a brain full of zombie nightmare panic and low blood sugar, so I stumbled out into the kitchen. And proceed to drink about three cups of juice to quell my anxiety, checking in the hallway for zombies after each gulp.  It's so psychological, the way that juice calms the "low feeling" faster than anything else, purely in my mind.  Even if my blood sugar doesn't budge a bit, just drinking something sends my brain the "it's going to be okay" message.  (But I hate over-treating, because then I just end up high. See also: This morning's waking 290 mg/dl blood sugar.)

I wander back to bed, Abby circling my feet like a shark while I walk.  I'm starting to feel better, even though it doesn't dawn on me yet to maybe bolus for all the extra juice I drank.  Running my toothbrush under the water (because I can't stand waking up with that juice taste in my mouth and yes, this post-low dental hygiene thing happens all the time), I look into the mirror.  My hair is a disaster.  My eyes are wild, like a child who has been locked in a closet for days on end, pupils darting from side-to-side, panicked.  The bags under my eyes are distressing and apparently packed for a long trip.

God, I look awful.  Is this what a low looks like from the outside?

I remember the zombie dream and realize how ridiculous it was.  What kind of person dreams that Kevin James is gnawing off her arm?

I smile.  

And am startled to see my red teeth grinning back at me, stained from the frosting.   

June 04, 2009

Stereotypes: We Haz Them.

I'm sorry, can you speak directly into this and let me know what ignorance you're spewing?A member of the Diabetes UK outreach group sent me their video about "setting the record straight," featuring a young girl with type 1 diabetes who is being bullied by her peers.  They taunt her, telling her she brought this on herself and that she is contagious.  She turns to the camera and asserts the facts about type 1.

And I agree with this.  My diabetes isn't contagious.  It isn't because I ate too many candy bars as a kid or because I had a weight problem or because a black cat carrying red balloons crossed my path on a Tuesday evening. But how often do I turn to the camera ... I mean, person, and set them straight with a well-articulated and poised onslaught of accurate information?

I am not a doctor and I can't spin you a tale of the precise physiological aspects of how diabetes works, but I do know that there's a pile of stererotypes. Though blogging, my job at dLife, and just simply sitting on the subway, I come across plenty examples:

  • "Diabetes is from eating too much sugar."
  • If you wear a pump, it means you diabetes is "really bad."
  • "You can't eat sugar."
  • "You can't eat carbs."  
  • (You can't eat anything, it seems.)
  • "Diabetics shouldn't have kids."
  • "Aren't you supposed to exercise when you're low?"
  • "Diabetes is contagious and you can get it through sharing needles."
  • "People with diabetes are unclean."
  • "Diabetics are the reason for increased healthcare costs."
  • Kids with type 1 diabetes can eventually outgrow their disease.
  • "Diabetes is cured by taking insulin shots."
  • "People with type 2 diabetes gave it to themselves."
  • "All diabetics are overweight."
  • "Diabetes isn't a big deal."
  • "Did you used to be fat?"
  • "No one wants to date or marry a person with diabetes."
  • Diabetes can be cured by taking this pill, this chocolate shake (!), this raw food diet, this crap supplement.
  • CGMs and pumps are a closed-loop system and by wearing one, I don't even have to manage my diabetes anymore.
  • "You're grown up now, so your mother doesn't have to worry about your diabetes anymore."

And the list goes on and on and on ... for miles.  I can't even list all the ones I've heard over the last 20+ years because they vary in shapes, sizes, and levels of ignorance.

Chris and I talk about this sometimes, about how much the "average" person doesn't know about diabetes.  About how I get offended at times when people talk about diabetes like it's something not worth worrying about or how people who end up with complications are at fault for their body's failure.

"Not everyone understands, Kerri."

"I know, but I really wish they did.  And I know that's unreasonable because plenty of people have much better things to do than care about a disease.  But I cannot stand when diabetes is made out to be something that I 'asked for' or something I manage so easily with the push of a button on this pump, right?  Do we look to healthy?  Do we not look healthy enough?  I think this is a serious disease and the stereotypes make me nuts sometimes."

After a beat:

"Good thing I'm not bitter, right?" 

We laugh, but the song remains the same.  People don't have a clue sometimes.  Sara is writing about itGeorge is Tweeting about it.  And I've touched up it here at SUM, too.

I want to know what kind of stereotypes you guys hear about.  Do you bother to correct people?  Do you write letters to let companies know that their marketing campaigns are painful to watch?  Do you make efforts to ignore the misinformation or do you work to correct it when and where you can?  Or are you practicing your apathetic "pfffft!" and moving on without giving it much thought? 

June 01, 2009

Focus: The Diabetes Things I Like.

Even though I do not like the disease, there are some diabetes-related simple pleasures that make me smile:

  • I like when I change the battery and the insulin reservoir at the same time.  Having my Medtronic 522 "full" on both sides makes me happy.
  • I like when the carb count on something is exactly 10 grams of carbs because it matches my insulin to carb ration precisely.  One snack, one unit, one oddly happy Kerri.
  • I like the sound of the pump counting up a bolus.  Boop boop beep!
  • I like when the sound of the bolus is caught by Chris and he ends up whistling it back to me, almost without thinking.  It's a little soundtrack snippet of our life.  
  • I like when the cats wait patiently for me to remove the pump tubing from my body before they lunge for it.
  • I like when new boxes of diabetes supplies show up and I can organize them in my little OCD supply closet.
  • I like when the number on my meter is two digits, but higher than 89 mg/dl.  It's a tight range, I'm not usually in it, but it brings me weird joy.
  • I like when the Dexcom beeps and my coworker (who works a wall away from me) IMs me quietly to check, "Low?" because she's ready to get juice if necessary.
  • I like not having to wear a watch. Diabetes simple pleasures.  Damnit.
  • I like when I get to dump all the used test strips that have piled up throughout the day.  Knowing I've tested a bunch makes me feel like I really stayed tuned in.
  • I like the smell of white glucose tabs.
  • I like when the new infusion set doesn't sting at all.
  • I like having someone in my life who is willing to get their hands covered in SkinTac in an attempt to stick a Dexcom sensor to random places on my body.
  • I like that the hope of the parents of kids with diabetes rubs off on me, and makes me feel good for even just a few minutes.
  • I like that diabetes gives two people, who wouldn't otherwise have a thing to say to one another, a whole dinner's worth of conversation.
  • I like having coworkers who understand but don't push.
  • I like when my best friend clinks her beer to mine and says, "Bolus, baby."
  • I like when the cat licks my hand after I test.
  • I like "free shower:"  a shower without a pump site or a CGM sensor attached.
  • I like having a whole network of people who understand - and do not judge - my diabetes life.
I like when I can focus on the silly, simple things when I feel a little overwhelmed by the tough stuff. 

Let There Be Cake!

Even though our anniversary was two weeks ago, we had to wait until this weekend to score our cake.

This shit will set you back about 4,323 units of Humalog.

(Note:  Our original agreement with the cake baker was that instead of saving our wedding cake topper for a year and eating nostalgic, yet crunchy-stale cake, we would have a new cake baked on our anniversary.  Which was fortunate because our actual cake topper ended up in my Aunt Linda's back room for three weeks, stored with our wedding gifts, while we were on our honeymoon.  We returned to a box filled with cake that had sprouted what appeared to be ferns.  Thus, inedible.  And double-thus, we were thankful for the 'new cake' agreement.)

So on Saturday morning, Chris and I went to a cool little tea house in southern RI and stuffed our faces full of red velvet cake with butter cream frosting.

So delicious!

It.  Was.  Awesome.

And as irony would have it, my blood sugar was 130 mg/dl two hours after aforementioned gluttony.

The diabetes gods were smiling upon us.  Thankfully.  Because I've been wondering where the hell they've been lately.  ;)

May 29, 2009

Old School Diabetes: Meters.

A few weeks ago, when I was poking through some old photos, I found my first teaching manual from Joslin.  (The big, red book.)  And tucked inside of that book were some old advertisements for glucose meters.

Like this brick from Accu-Chek:

Old meter from the dark ages of diabetes.

This thing was huge, took two minutes to produce a result, and it was heavy enough to double as a hurricaine doorstop.  It's remarkable how much this technology has changed in the last twenty-two years.  Here's another oldie:

Another oldie.

I love the instructions - they're a freaking mile long!  Blood glucose monitoring has come a very long way since my own diagnosis - from urine testing to blood testing to the Dexcom that reads me every five minutes - but I'm not as impressed as I'd like to be.  I heard a few months back that the accuracy requirements for today's meters are the same as they were back in the late 1970's.  (Is that true?!)  Color options are great and shorter instruction manuals are also nifty, but I'd like this thing to give me results that are SPOT freaking ON. 

Like this morning.

I tested and got 77 mg/dl on my meter.

The Dexcom said I was 39 mg/dl.

I tested again and saw 101 mg/dl.

How can I respond to a number that doesn't sit still for even a second?  How is a diabetic supposed to aim for that moving target?

Most days, diabetes doesn't get into my head and scratch around.  Most of the time, I feel emotionally and mentally equipped to handle the disease management and "life" management.  It's never fun, and never simple, but it's something I feel at peace with.  But this morning, I couldn't even get a sense of what blood sugar number to react to.  And when I peeled off the Dexcom sensor to replace it, a ripe, red dot of infection had brewed up underneath.  My blood sugar, when I arrived at work, was 123 mg/dl but after I ate my snack, it crested up to 234 mg/dl for some ungodly reason.  I don't know which end is up.  And technology isn't doing anything to make type 1 diabetes any easier.

Today, I'm spent.   

May 26, 2009

Sotomayor and Diabetes Get All Media'd Out.

I can't pretend to have all the information on Judge Sotomayor and her Supreme Court appointment.  But I do know that my first day back here at work has been one email after the other about Sonia Sotomayor and the effects of her type 1 diabetes on her potential new gig. 

Total media deluge.  Here are some of the highlights:

  • Time Magazine provided an article that made me wonder if I'll make it to 40 years old, never mind to tomorrow, complete with heroin-esque photo to represent an "insulin injection."  They unfortunately paint diabetes as a disease that will rot you in a month's timeframe and leave nothing but your shoes.  (Hey Time, why don't you visit the Diabetes365 project to get a feel for what real diabetes photos look like?  Sorry for that digression but mainstream media needs to get their hands on some better, more accurate stock photography!)

  • The Wall Street Journal asks the question, "Should Sotomayor's diabetes be considered in the nominiation process?", citing the ADA's press release applauding Obama's selection.  Apparently, Sotomayor's weight is under attack as well as her diabetes status.  Are only the uber-healthy capable of just rulings?  The news, she is going berserk.

  • The Newsweek "Human Condition" blog comes right out and says not to worry about Sotomayor's diabetes, stating, "And while Sotomayor's condition may lead to complications that force her to retire after twenty years of hard work on the court, there's also the chance that if appointed, she could be hit by a bus on her second day and be forced to retire then."  (Morbid, but good point.)

  • The Huffington Post is in on the action, too, calling out a few Twitterers for running their 140 characters:  "Glenn Beck's Twitter - wondered if Obama, the 'messiah,' has healed Sotomayor's diabetes yet. Michelle Malkin proved that Twitter's 140 character cap isn't too strict to include both a vague sexist and racist remark."  And the Wonkette takes sarcasm and snark to a new level with their "Sotomayor has diabetes - good or bad?" column.

  • Yet this article from the New York Times doesn't even mention her diabetes at all.

  • Of course, this topic hasn't escaped us, the diabetes community, either.  Amy wrote about Judge Sotomayor last week, David posted on Diabetes Daily, the dLife Today blog has a piece, and TuDiabetes members are sharing their perspectives, too, like Jenny's post and Ann's discussion.  The JDRF also issued a statement regarding Sotomayor.  And I'm sure there are others who weigh in.

Holy media overload.  The Internet is exploding, it seems. 

I admittedly do not know much about Judge Sotomayor or her background other than what I've read over the last week or two about her potential appointment.  But I do know quite a bit about type 1 diabetes after 22 years with it.  And in my opinion, her diabetes shouldn't play a role in this consideration process - at all.

A "defective pancreas" does not mean a defective mind. 

Back Home.

I'm back from vacation and slowly trying to catch up on all the stuff I missed (including reading all the blog posts, returning emails, and sucking down iced coffees now that the weather has finally made the turn to Officially Summer).  I'm not even sure where to start ...

... so I'll start with a quick and dirty rundown of our vacation, with photos:

Mega ship, yo.

The boat was enormous, and we never really quite got our bearings, and we always ended up late to dinner because we took a wrong turn.  (This is partially because the ship is huge and partially because we get lost in our living room at times.)  During the course of the week, we went from Miami to Grand Turk in Turks and Caicos and Half Moon Cay and Nassau in the Bahamas.  The weather was decent, but just being away was awesome.  

I liked the elephant best, I think.

Every night, we dressed up for dinner and when we returned to the room, a towel animal creation greeted us.  (As I've mentioned before, towel animals bring me unparalleled joy.)  The animals we could identify were a bulldog, a manta ray, and an elephant.  We also received what appeared to be a vagina walrus (judge not until you click through, love).

Our creation!

As a playful preemptive strike, we built our own towel animal - the rattlesnake.  Complete with eyes, tongue, and a scary rattle tail (read:  hairbrush shoved in the end of the towel).  We thought we had bested the housekeeping staff, but they trounced us with their cobra.

Damn talented Carnival staff.  We'll best you yet.

Stephen Wunder, perhaps?

And we also may have seen Stevie Wonder perform, but I'm not completely convinced it was him.  At the end of a talent show one night, the cruise director announced, "Okay folks, stay in your seats for a special treat!"  And the lights went down again, the stage was roped off, and this man who looked JUST LIKE STEVIE WONDER was escorted on stage and performed "Superstitious."  It may have been a lookalike, it may have been just some guy randomly named Stephen Wunder or something, but could it have been the actual Stevie Wonder? 

If anyone can confirm that Stevie Wonder was traveling on the Carnival Cruise ship "Destiny," please tell me.  Google is no help to me on this one. 

Not quite sugar-free, but the thought counts.

The food was tremendous.  And some of the many dessert options claimed to be 'sugar-free,' like the one pictured above.  Sugar-free?  Maybe.  But carb-free?  Oh hell no. 

Decked out for dinner.

We celebrated our one year anniversary in style and in love, and it was a good break from all things Internetty.  We needed a few moments from the chaos. 

It was so nice to get away. 

But it is also nice to come back home.  And take my blog back from that little gray Sausage cat.

(More photos are over on Flickr, but beware of many, many, many shots of the ocean.  I was overzealous.)

May 14, 2009

I'm Sorry ... Glucose Spray?

Tuesday night's meeting did more than introduce me to some fantastic fellow type 1s ... I was also ushered into the wonderful world of glucose spray.

I know.  My face made that "Excuse me?" look, too.

One of the women at the meeting, Christina, was talking about her low blood sugar treatment methods and then she whipped out this little bottle of what looked like my dad's binaca spray

My world was once just glucose tabs.  And then they juiced 'em up and developed liquid glucose shots.  And gels.  (I love the gels, to be honest.)  But spray?  A glucose spray?  That was new to me.

So I took a picture of it, for posterity.  

The mystical, magical glucose spray.
 
(Hand model is Karen, because if I took a picture of my rotten hands, you'd force me back into my gingerbread house to wait for Hansel.  And not the other Hansel, even though he's so hot right now.)
 

According to myth, and what was written on the back of the bottle, you spray this stuff into your mouth and it absorbs into your cheeks.  The bottle says five sprays, but Christina dismissed that recommendation with a distracted wave.  "You need like 10 or 15 sprays, honestly."  

I seriously thought this was the coolest thing.  Because I'm skeptical about anything that involves "change," I'm wary of its effectiveness, but I'm so curious to see if it would work as fast as my beloved juice. I have never seen this in my local CVS, but their website lists it as available in Rite Aid, Wal-Mart, and several online distributors.  And I haven't tried it yet, but I think I'm going to have to. 

Just to satisfy my own curiosity.    

May 13, 2009

Guest Listener.

I boarded the train in Connecticut and from the time I found Karen (of Bitter-Sweet fame), I was downing Dex4 liquid things, glucose tabs, and Smarties constantly.  The Dexcom kept BEEEEEEP!ing, my meter kept confirming, and I kept infusing the sugar.  I was under 70 mg/dl for the entire train ride, the cab ride, and then the first ten minutes of the support group meeting in NYC.  By the time the group arrived and we were doing introductions, I was punchy from the sugar rush.

"Hi, I'm Kerri Sparling and I've been low since Karen and I got on the train in Connecticut." 

This is how I decide to introduce myself to the support group in NYC?  Great.  Already off to a decidedly awkward start.  (But I'm nothing if not awkward.)

But these women were patient with my ramblings.  And they truly are something else.  Katie Savin, organizer of the NYC support group for young women with type 1 diabetes, has found some of the most compassionate, open, and well-spoken women in the NYC area to share her space with.  I was invited at their guest speaker, but I was humbled to be more of a guest listener.

They share openly.  Someone asked a question about CGMs and three people leapt up to show their sensors.  A woman shared her emotional journey with complications and guilt and the rest of the group immediately offered words of support and validation.  Another woman is getting married nine days from today and went on her pump barely a month ago, and the group offered tips on hiding her pump in her dress.  Another (with the best hair I've EVER seen) is marrying in November but proactively preparing her body for pregnancy, and I felt her frustrations intimately. 

We talked about what it's like to be newly diagnosed, or a diabetes veteran.  Some on pumps, some on shots, some on CGMs, some on the fence - it was a melting pot of personalities and passions, all lives laced with type 1 diabetes.

It.  Was.  So cool. 

(And I finally had a chance to meet LeeAnn from The Butter Compartment and author Elizabeth Joy. I love putting smiles and inflection to the writers I read, and I was very happy to say "Oh my gosh, hi!" in person.  They are two lovely and extremely talented writers, that's for damn sure.)

The hour and a half meeting ended too soon, and we found ourselves tumbled out onto the sidewalk and chatting out there.  Sidewalk chats lead to sidewalk photo shoots.

And photo shoots lead to "Are you going to put that on the blog?"  

Of course I'm going to put this on the blog, damnit!  :)

(Answer:  Yes.) 

And then we blinked and about ten of us were sitting at the Gramercy Diner and still talking our faces off.  I am constantly amazed by the steady and comfortable flow of conversation between diabetics, and how quickly the conversations stray away from diabetes stuff.  We are not short on things to say, it seems.  (Just short on islet cells.  :: rimshot ::)

Much like the Fairfield County dinners, the group is comprised of people who have nothing in common but diabetes.  But at the same time, that gives them everything in common that they need to sit and talk for hours on a Tuesday evening and become friends.

Thanks for having me, Katie - I was very honored to be your guest.  I hope to see you guys again soon!! 

May 12, 2009

A Little Bit Naked.

For the last five months or so, I've been wearing the Dexcom with frightening regularity.  Having it on the bedside table or on the headboard became commonplace, and the receiver laying on my desk at work was as normal as my Blackberry sitting there.

The Dexcom Seven Plus upgrade bit made a difference for me, too.  It updates in accordance with my calibrations wicked fast now, instead of taking anywhere from 15 - 30 minutes to synch back up.  The trending arrows are awesome and very helpful for me, because my blood sugar skyrockets and tumbles fast at times.  I know when I heard about the new system I was a little "Ooooookay,"  because it didn't LOOK any different.  The sensors are the same, the transmitter is essentially the same (gray instead of black), and the receiver is the same.

I missed this thing.

Only it's not.

The size and shape of the device and it's components hasn't changed, but whatever they tweaked on the inside there really made a huge difference.  Since switching to the Seven Plus back in March, I've seen big changes in how this system performs.  It was accurate enough before, but now it's scary accurate.  To the point where I've eaten based on double-down arrows, and I've conservatively corrected the highs.  (Note to readers:  CGMs aren't supposed to replace blood tests, so this is definitely a "do as I say, not as I do" moment.  Test before you treat any number.)

So anyway, I'm all nice-nice with the Dexcom these days.  But just like with the pump, my skin gets a little irritated from overuse.  Shuffling around pump infusion sets and Dexcom sensors for weeks on end, coupled with my abdomen avoidance techniques, left my hips and thighs a little tender.  I needed a few days to let my sites heal.  So I went home to RI last weekend without my Dex.

And I felt a little bit naked.

I didn't miss the sensor being on me, but I felt weird not having access to that information.  I took my mother out to breakfast for her birthday on Saturday morning and I felt the need to test three times over the course of a three hour breakfast because I "needed to know" how I was trending.  Same thing at dinner that night.  I've grown accustomed to the graphs and charts and instant blood sugar information, and being without it made me feel exposed.  My numbers were roaming around unsupervised, or at least not with the supervision I was used to. 

I went to calibrate it before bed and didn't realize it was MIA until Chris said sleepily, "It's at home."  I spazzed out when I couldn't find the receiver in my purse.  And when we were driving on 95 on the way back, I checked the center console (where it lives when I drive) and actually felt sad that it wasn't there.  I missed it - is this possible?  To miss a device? 

So weird.

I wondered how long it would take for this to happen.  I felt the same way about my pump when I took it off two summers ago for a white water rafting trip.  I was used to the pump, so to be without it was odd.  And now, I'm finally used to the Dexcom, so taking a break for a few days threw me off my game.  Even though I am not always comfortable wearing the physical hardware, I'm more comfortable managing all this diabetes crap when I'm wearing the devices.  More information, at least for me at this stage in the game, is better.

The Dexcom is back on.  I haven't decided fully if it will travel on our cruise with us, but at least for now I'm fully dressed.

[Dexcom disclosure]

May 07, 2009

Wrist and Shout: The Vlog.

I have a lot of things I need to follow-up post on (i.e. product reviews, the guy from Panera, guest posts, etc.), but I found myself recording a ridiculous lunchtime vlog about the cortisone shot, blood sugars, and my ridiculous wrist issue.

Thankfully, my wrist seems to be on the mend, but the shot wrecked some havoc on my numbers.  I'm hoping that this is the beginning of the end of this ridiculous problem.

Also - Siah?  Ridiculous.

May 06, 2009

Diabetes Treat: Sugar-Free Popsicles.

Free foods pretty much ruled my freaking world when I was a kid.  Sugar-free Jell-O, pickles, cucumbers, and sugar-free popsicles were stashed in mass quantities in my childhood home, so that my prying little diabetic hands would hopefully land on a popsicle instead of an "E.L. Fudge" cookie. 

(Note to Michelle:  Your comment a few weeks back about El Fudge the Zorro Cookie still tops my list as one of the funniest comments of all time.)

And even though I'm a grown-up diabetic these days, the disease remains the same.  So does my struggle with food.  Now it's up to me to keep my kitchen stocked with tasty sugar-free treats. 

But some things are a little bit different than they were twenty years ago.  For instance, Chris and I are very wary of sugar substitutes and even though I use Equal in my coffee every morning, I'd prefer a non-chemical alternative.  We try to eat as healthy as possible and buy organic whenever we can (even though it's freaking pricey to buy anything in Fairfield County, where they charge $3.00 for an iced coffee without batting an eye), but avoiding those sugar substitutes is really a challenge for me.  I'm used to Equal and it's mega-sweetness, and other natural alternatives don't pack the same punch.   So we don't always take the organic, attempting-to-be-healthy highroad, and often times we find the grocery cart packed with sugar-free popsicles and Jell-O and other "safe for diabetics but just ignore these chemicals" items.

Because it's hard to find crap I can eat that doesn't make my numbers go berserk and isn't packed with chemicals!

/rant   

Delicious.  Not quite nutritious, though.

I'm a sucker for a good popsicle.  (And for a good pun.) I'll even eat the orange ones, even though they get a bad reputation for some reason.  (Why do you eat the grape ones first, Chris?  What do you have against the orange?)  Popsicles are my favorite method of staying hydrated when my blood sugars get all teeth-sweaters high, and Chris can often tell if I'm working through a high by the number of popsicle wrappers that collect on the coffee table.  And the effects on my numbers are so minimal that I can eat three in a row without a blip on the Dexcom.

Free foods.  I love 'em.  I appreciate 'em.  And when I get all snacky in an unruly way, I need 'em.

What kinds of free foods are you guys snacking on?  

May 01, 2009

The Friday Six: May Day!

I must thankfully admit - blood sugars have settled down a wee bit (thanks to a 150% basal rate increase that I'm not changing until I'm sure the cortisone is out of my system) and my wrist might be feeling a little better, so things are looking much sunnier in my corner of the Internet today.  About damn time. 

It's time for a little Friday Six action:

1.  Last night I had the opportunity to attend the JDRF Spring for a Cure event at the Metropolitan Pavillion in NYC.  I haven't been into the city in a few weeks, so it was kind of fun to ride the train in and get a little "aaaah" over Grand Central again.  I met up with Gina Capone and we spent a few hours checking out all the trappings, from cheesecake to white wine.  We ran into my former coworker Jon and his wife Lindsey, fellow blogger Allison Blass, and some of JDRF's finest.

Kerri and Aida - chilin'.

The JDRF knows how to throw an event, as the place was packed with people all passionate about diabetes research and a cure.  Including Soprano's star Aida Tuturro, who I spent some time talking to.  (She's a hot ticket!)  Aida has type 2 diabetes and was featured on dLifeTV a few seasons ago.   

2.  Also, best-selling author Brenda Novak is a friend of the diabetes community, thanks to her Novak’s 5th Annual Online Auction for Diabetes Research.  According to the press release, "The auction is held each May is a labor of love for her son who has lived with the disease for most of his life. It is also a month-long online event featuring lunches, dinners and one-on-one meetings with celebrity authors, world-class getaway vacations and state-of-the-art gizmos and gadgets."  And this year, my friends at the Diabetes Research Institute are the sole beneficiaries.  Pretty darn cool.  Visit the auction site and start bidding.  It all benefits a cure!

3.  Today is the last day to enter the Diabetes Mine 2009 Design Challenge, so if you're still thinking about entering to win $10,000, you'd better get cracking!   Submissions can be sent in until 11:59 Pacific time, so there's still time to enter. 

4.  The new issue of diaTribe is out with an all-new SUM Musings - complete with cameos from my mother and my brother talking about diabetes awareness for those who aren't diabetic themselves.  If you aren't a subscriber already to diaTribe, sign up.  Seriously.  I know I'm a columnist there and am very biased, but Kelly and Co. do a fantastic job andThe Friday Six:  May 1, 2009 edition I'm a proud supporter of their work.

5.  In a little plug for my office, the production team at dLifeTV is looking for a few good diabetes stories to potentially feature on the show.  Currently, they're seeking college students with diabetes, married couples dealing with diabetes in their relationship, and diabetics struggling with alcoholism.  Check out the call for submissions and see if we're looking for YOU.

6.  And in a little plug for yetis, I think I may have spied one from the train last night.  We were just about to pull into Harlem 125th when I looked down and saw a person sitting on a bench outside.  Wearing a full fur suit.  Like a real fur suit - no joke.  I am not unconvinced it wasn't a yeti.  Which leads me to SkyMall.  Which leads me to this video.  Then this one.  Which leads me into a brain tangent I wasn't prepared for. 

Holy digression.

I'm off to buy a yeti.  Or maybe just take a nap.  :)  Either way, have a good weekend!

April 30, 2009

I'm in the Zone: Cortisone.

So yesterday I went to the orthopedist for this wrist mess.Frigging sting!!

I was all, "I've been wearing the brace and I stopped lifting at the gym and have generally been taking it as light as I can, but no improvement."

And he was all, "Well, we looked at your x-rays from today and your radial and ulna bones are in perfect position, so it does appear to be a tendon issue and not a bone issue."

And I was all, "That's good, right?"

And he was all, "Yeah.  So let's talk about options.  We can move with the brace for another month, or you can do physical therapy, or you can do surgery."

And I was all, "Hmm.  Well the brace isn't helping yet.  And I don't want surgery.  Let's do a cortisone shot and follow up with physical therapy?"

And he was all, "You're an educated patient.  Okay, we'll do a very small shot today and see how that works for you."

So I sat down in a chair in his office and he moved a small table towards me for me to prop my elbow up on.  He left for a minute and then returned with a small bottle, a cotton swap and injection prep wipe, and a massive needle.

And I was all, "Whoa, that's a big needle.  Do you put the whole thing in?  That would come right out the other side of my hand!"

And he was all, "But you do needles every day, don't you?  This should be okay with you."  

And I was all, "Irony, eh?  I hate needles that I'm not controlling.  And that mega-needle?  Scares me."

And my blood in my face was all draining, so I looked white as a sheet.

He was all, "You're going a little pale on me.  Are you okay?"  He swabbed my wrist and shifted my arm around until the proper injection area was exposed.

And I was all, "I'm okay, I'm just not going to watch, okay?"

He nodded.  And the needle was all of a sudden embedded into my wrist and the pressure of the cortisone being injected made me squirm instantly.

I was all, "Ow."

He was all, "Just a few more seconds and I'll be done.  And ... you're done.  You okay?  Do you need to lie down?"

And I was all badass:  "Nah, I'm good.  I'm just going to sit here for a minute while you explain what happens next and I pretend to listen fully despite the pain."  I smiled.  But winced.  Sort of at the same time. 

And he was all, "Elevated numbers for a few days ... increase basals with your endo's help ... keep wearing the brace ... it's going to hurt where I did the shot tomorrow, but you should feel real improvement by about this time next week ... if you don't, we'll want to do that physical therapy and consider maybe another shot depending on how you feel ... you'll be okay ... hey, are you okay?"

And my color was all returning, but slowly.  We finished up, and I tested.  155 mg/dl.  Okay, a little higher than the 114 mg/dl I walked into the doctor's office at, but it must have been a stress bump.  I didn't want to fool with my basals until I was sure that the cortisone would make me high, so I waited a few hours before doing some tweaking

In the course of six hours, I went from 155 to a steady stream of 190 - 240 mg/dl numbers.  I tested for ketones and - low and behold! - the little stick went light purple on me.  Small ketones, prolonged highs, and the pain from the actual shot set in around 8:45 pm.  This morning, I woke up at 213 mg/dl and even after an aggressive bolus, I'm still cruising in that general range.  Basals have since been cranked to 150% and I'm both wearing the Dexcom and testing every hour.

The ketone thing is what's throwing me for a loop.  I hardly ever throw ketones - why now?  I drank a lot of water, ate some carbs, and still had the ketones this morning.  (Poor Chris - I asked him to test himself for ketones because I was convinced the Ketostix weren't working right.  He was all, "Um, I'm negative."  And I was all, "At least I like the color purple.  Blaaaargh.... ")

I hope this was the right decision.  I'm desperate for my wrist to heal.  The doctor said this pain and the highs could go on for 3 - 7 days.   

And I was all, "This sucks."

April 22, 2009

Wrist and Shout: Part II.

I can't take it anymore.  This wrist thing is making me crazy.

Since my "diagnosis" with tendinitis in February, I've done plenty of attempted cutting back on repetitive movement:

I've been trying to use the computer mouse less.  Fat chance, seeing as how my day job is extremely computer intensive, and blogging also uses - wait for it - the computer.

I bought a Bamboo.  Yet I haven't had more than 15 minutes to sit down and learn how to use it.  So it's still in the box.  Sitting there.  A waste of money and good intentions.

I took Advil for several days.  Actually, I took it for almost three weeks, and then I heard about the kidney + Advil conundrum.  But also, I didn't like the fact that once the Advil wore off, I was back to being in pain.  Seemed like a bandaid.  I want to fix this.

I sleep with a wrist brace on.  What's sexier than your wife climbing into bed, wearing a pump, a Dexcom, multiple attached sensors, and a wrist brace?  All I'm missing is the damn headgear.  And I'm wearing the brace for more than just sleep - I wear it when I'm driving, as often as possible at work, and if I ever watch television for more than 10 minutes.  (Rare, but it happens.)  

I stopped weight training.  Before my wedding, I was doing as much resistance training as possible.  I liked the effects it had on my body.  But since February,  I've had to stop weight training completely because I can't lift anything up.  I can't do tricep dips.  I can't jump rope.  I can't even hold weights while doing lunges because of the stress on my wrist.  So I've been doing more cardio than usual and gazing w(r)istfully at the free weights.

I can't carry grocery bags.  My wrist explodes with pain when it grazes my desk or the couch or the kitchen counter.  I can't even throw Siah off my chest when she's trying to sniff me to death at night.  (That cat is getting fat.)  I'm not one to complain about physical discomfort, but this wrist pain is beyond tolerable.   

I feel like a 90 year old woman. 

So I went to the Twittersphere and pinged my question out to them in 140 characters or less:  "Tough workout. Wrist issue (tendinitis) is not healing. Has anyone had this before? How did you fix it? V. frustrating."

Responses ranged from "Advil and rest!" to "Physical therapy and a brace!" to "Cortisone shot!"  Apparently, I'm not the only new media-type to have grappled with this issue before.

I called my doctor this morning and explained the situation.  After she realized that, despite my attempts to ease up on the wrist stress I still wasn't on the mend, she recommended I speak with an orthopedic practice and get an appointment.

"They may want to give you the shot that day, so be prepared, diabetes-wise."

"This could make me go high for a few days, right?"

"It depends.  They won't give you much in the injection, and it's a localized dose, so you may not see more than a premenstrual-style spike.  But you might see more than that.  It depends on a lot of factors.  The orthopedist can help answer those questions more specifically."

(This is EXACTLY why I prefer working with a primary care physician who is comfortable with specialists.  She knows that she can cover my basic needs, but she's quick to refer me to doctors who can handle specialized needs.  I like that she doesn't pretend to know everything.  Doctors who acknowledge that they, too, are human make me feel safer.)Can't dial one of these things, thanks to CRAPPY WRIST THING.

"Cool.  Thanks.  I'm tired of feeling like an old bird."

She laughed.  "Let me know how it goes."

So I have an appointment tomorrow morning with an orthopedist, and I'm sort of hoping they do the shot tomorrow so I start putting this pain behind me.  I can't wait to weight train again.  And lift grocery bags. 

And throw Siah.   

April 21, 2009

Precision LogBooking.

"So what is this one, the 236.  Did you correct this?  Is this after eating?  I can't really tell."

And I peered at the logbook, chock full of results.  Months of results, all neatly organized by date and time.  Only without food or insulin doses written in, so it was less like a diabetes assessment tool and more like the machine that spins the bingo balls. 

"Ah, I have no idea.  Damn, I have no clue, actually.  I'll assume I corrected it." 

There's not too much difference between writing in all the results the night before an endo appointment and printing out the numbers.

With last week's endocrinologist appointment being a little less than thrilling, I'm on a new game plan to get ready for my June follow-up.  Dr. Brown has asked me to keep a detailed logbook of my numbers.  Not necessarily a food journal, but more a list of blood sugars, insulin doses, and carb intake.  

"You don't need to list the kind of fruit you ate, but if you just put that it was 20 grams of carbs, that would be what we need.  That way we can tell what's causing what."

The wee ickle logbook.

So I bought a very small moleskine book to record everything. (I love these books. I have one in my purse at all times and I use it to jot down everything from blog post ideas to words I want to remember to look up to reminders that if I don't pay my cell phone bill, they will come for me.)  It's a wee little thing and it fits in my meter case.  Surely it will be covered in blood and have test strips stuck to it by the end of June, but so far it's been one full day and I'm still on the wagon.  (And that, my Faithful Readers, is saying a TON.)

I get burnt out with the details of diabetes.  The whole logging thing throws me off my creative stream of consciousness.  "You mean I have to write this stuff down and analyze trends?"  I'll wear the pump and the Dexcom and do my due diligence, but when it comes to the diabetes nitty-gritty, I often tumble off the wagon.  

It's a lack of patience.  Maybe a lack of desire to make a blood sugar testing moment last more than the five second countdown.  I don't like when I feel so much of my time slipping into the realm of diabetes management.  And I make plenty of excuses not to focus:  "I'm heading to Tucson."  "I'm going home to RI for the weekend."  "I'm having dinner with NBF."  "I'm too busy at work."  "I'm ... no."  

But I'm a woman on a mission.  If I don't ever buckle down and make my A1C my top priority, it may always hover around seven plus percent.  Even if it's a pain in the ass, and even if it's "hard," I owe it to myself and my future family to give it my best.

Poor Chris.  He thought Twitter ate up time?  Wait until he sees how often I have to logbook.  

April 15, 2009

Deflated.

Yesterday didn't go as well as I had hoped.

The nurse came in first and took my blood pressure (fine), weight (slightly higher than last time but I can deal), and my A1C.

(Yes - Joslin is finally giving their adult patients A1C results day-of!  I was abnormally excited.  "You mean I'll know in 15 minutes?  Really?"  The nurse looked at me like I was new to the planet.  But for a minute, I was ecstatic.  I hate waiting.)

While the results were being spun, my endocrinologist came into the office and she and I spent almost two hours together going over numbers, plans for improvement, and the specifics of pre-pregnancy appointments.  While we were talking, the A1C result came through.

"Okay, so you're just where you were four months ago."  

And I felt like crying.  It's overly-dramatic and pretty sad to feel so affected by this number, but it has always been the standard I judged everything against.  It was the number that defined my health. It was the only number in my diabetes world that mattered, and a result that was too high tarnished my spirit.

It spoke to my success, or failure, as a person.  

Or at least that's how it's always felt to me.  

So I felt very teary and felt totally deflated.  And my endo kept talking, moving on past this number and instead trying to isolate patterns in my blood sugars that could be contributing to this result.  We went over my January lab results, and she was very happy with my cholesterol and my heart health.

"You're exercising how often?  Five days a week?  That's great.  I wish more of my patients were into their cardio that way.  Your resting pulse is very low.  That's good."

I couldn't stop thinking about the A1C.  Even though we're not actively trying for a baby, I wanted to get the green light, at least diabetes-wise.  I want to be a mom, and I don't want diabetes being anything that makes me decide to wait.

"Yeah, but the A1C.  I mean, that's the same as last time.  I felt so sure that I was doing better."

She looked at me.  "7.5% is not where we want you. Under 7, if we can, and even closer to 6, if possible.  But it's time, isn't it?  You feel ready?"

I nodded.  A little afraid to speak because this is something I've always wanted.  To be a mom.

"Okay, so it's time to schedule the pregnancy clinic.  Let's get this in motion and we can make everything fall into place.  And I want you to meet with Doctor Boston because she's the leading high-risk maternal fetal medicine ob/gyn out there, and she'll be able to handle your type 1 diabetes, Factor V, and hypertension.  You have more than two decades of diabetes under your belt, so I know you're feeling vulnerable.  We'll schedule this for June?  Does that sound okay to you?  Between now and June, you and I will work together to make this A1C happen."

"So the three of us will be together on this appointment?  And she'll see me through my pregnancy?"

"She'll actually be delivering your baby.  She's the best.  You'll be in very good hands, Kerri."

I had this moment where I clearly pictured this moment of delivery, when I will go from Kerri to "mom" and Chris becomes "dad" and in that instant, diabetes won't count.  It will be about me, and my husband, and my baby.  I felt hopeful that maybe, with enough help, I could really do this. 

"June.  And if I'm good in June, we can actually decide if Chris and I are ready to get pregnant?"

"Some mommies, I worry about.  I worry that they won't be willing to give it the best try they have in them.  But you, I don't worry about.  We can get you there.  You aren't going to do this alone."

"Okay.  I can do better.  I really need to do better.  I'm ready." 

She printed my prescriptions.  They took photos of my retinas to send to the pregnancy clinic.  I paid my co-pay.  I asked Chris to wait for a minute while I ducked into the bathroom.

I closed the door behind me and cried.  I'm so afraid that I can't do this.  I'm so afraid to do this wrong.  I'm almost afraid to try.  I'm afraid to hope.  But I'm so sure that I can overcome these obstacles, just like other women with diabetes have done before me, and become a mom. 

Cried so hard I thought my heart would break because I think this can really happen. 

Hopeful.  Damn it.
 

April 14, 2009

Joslin: I'm So There.

Thumbs up for, um, blood!I'm driving my little Honda up to Boston today for my endocrinologist appointment.  I spent part of last night printing my blood sugar logs from the end of March and the bulk of April (I have been keeping up with The Log Book, as promised - many blue stars on my chart).  I noticed that while I've been feeling like my control has been relatively good, I've had some zinger highs and a few trenches in the last 90 days. 

For whatever reason, I'm not dreading this appointment.  Oddly enough, I'm looking forward to spending the day in Boston, even if I will be at a hospital for much of the day.  Going to Joslin forces my brain to realign, and it always makes me feel hopeful.  I've been a patient there for over twenty two years, and it feels oddly like home.

They'll take an A1C, and I hope it's finally ringing in at NHB Range.  But my doctor has expressed more interest in having my numbers stable, instead of "good" as a result of averaged highs and lows.  She'd rather see me holding strong at a 140 mg/d as opposed to pinging from 300 mg/dl to 40 mg/dl. 

I'm not sure how I feel about an A1C result being the definitive measure of my diabetes control.  (Apparently Lindsey at Blogabetes has had the same thoughts.)  Is this a state of mind I've decided upon as a result of a result over 7%?  People talk about the estimated average glucose (here is a dizzying article including lots of math and here is an online calculator that keeps the math hidden where it belongs), but is it a true indicator of how I'm running?  And what is this fructosamine test I keep reading about?  What is the best way to tell if my body is healthy?

I'll have these tests today and I'll run through my list of questions (including, but not limited to, what can I do about this relentless tendonitis, is my blood pressure well-controlled enough for pregnancy, and do I really need to cut out ALL the coffee from my diet as I move forward here?)  I feel like I'm in excellent hands at Joslin, and I'm ready for whatever today has to throw at me.

(In the meantime, this had me mesmerized for quite some time yesterday.  I wanted to dive into the middle of that couch and snuggle every last one of those furry messes.)

April 10, 2009

Color Comparision Chart.

As I mentioned yesterday, I stumbled upon some diabetes relics at my dad's house the other day.  Now I'm totally in memory lane mode.  :)  I found this staple of my early diabetes management:

The Red Diabetes Book

The "Red Bible."  This book was given to my parents by the Joslin Clinic when I was diagnosed, and it held the supposed answers to any diabetes questions.  (You can see on the cover there where I was practicing spelling "restaurant" many years ago.)  I thumbed through the book and found plenty of recipes and snack ideas, all using the old food exchange philosophy.  Pages and pages of things I couldn't eat, and small sections of what my lunch options were. Half a cup of spinach, one sugar-free popsicle, rice cakes with peanut butter, those peanut butter nab things ... places to buy food scales and measuring cups ... countless pages focusing on food.  I always hated that assumption that a healthy diabetes life was achieved solely through my dinner plate.

There were three pages on handling diabetes in school settings.  No mention of 504 plans or testing in the classroom or anything about how my fellow students would react.  A short description of the symptoms of low blood sugar and how to treat it, but that was about it.

The pages on blood sugar monitoring and management brought me back to my diagnosis days.  When I first started testing my blood sugar back in 1986, we used a machine that took 120 seconds to produce a result and the strips were color-comparison ones that had to be wiped with a cotton ball and then plugged into the meter.  The color comparison chart seems so remedial compared to the UltraLink on my desk or the Dexcom on my hip.   Here's a screenshot of what we'd compare the color pads to:

Chemstrip color comparison chart

Not much to go on.  (And the numbers were too easy to manipulate.  I remember wiping the color pads on the strip with rubbing alcohol to make the results seem lower.  I wasn't the most responsible kid.)

The thing that kills me is the lack of focus on the emotions of diabetes.  There were only TWO pages on "living with diabetes."  How stress can affect blood sugar management.  How important the impact of a support network is for acceptance and dedication.  I want to rewrite this Red Bible and flesh out more of the parts that count.  Support groups, diabetes blogs, communities ... this is the future of diabetes management.  Meters have improved a little, insulin has improved a smidge, but our methods of support have leapt by such enormous margins that my future health is already brighter.  

My Joslin appointment is next week.  And believe me, I'll be talking about you guys there.

April 09, 2009

Old Photos.

I was at my father's house this past weekend and ended up poking around in some old photo albums, and these snapshots from decades past made me smile.  This is a before-diabetes photo.  I'm probably about three in this photo, and I also appear to love butterfly cakes:

Three year old Kerri.

This photo was taken two months after I was diagnosed with diabetes.  I'm at my first post-diagnosis birthday party (my friend Jill, the birthday girl, is on my right), and that box of sugar-free peanut butter cups were my answer to birthday cake.  It's weird to look at that photo and see how big my mother's responsibility was, because I was so small.  

Kerri at Jill's birthday party.

(Also, if you look closely, you can see Kitty crammed into the crook of my arm.  I brought that thing everywhere, and she still currently lives in my closet.  I waved to her this morning.) 

But out of all the photos I found, this one of me at Jill's birthday is one of the very few that brings any memory of diabetes.  I remember my mother coming to dinner at the party and giving me my shot, then coming back again before bed to test me and give me another shot, and then waking me up in the early morning hours as she returned to test and shoot me up again first thing in the morning.  

I have a clear memory of my mother and Jill's mother in the kitchen that morning, as we all toddled downstairs after our sleepover, and they were drinking tea.  It didn't dawn on me until later that my mother probably didn't sleep much that night, running back and forth between our house and Jill's house to monitor my diabetes.  I had barely been diabetic for two months, yet my mom made SURE that my childhood wasn't compromised, even when her life was.

My mom is my greatest diabetes asset.  She worked hard to make sure that my life was still mine.  And now that I'm an adult and on the cusp of my own motherhood, I am deeply appreciative of everything she has done for me.

Even now, when I need an ear, I call my mom.  

Who else you gonna call?

Who you gonna call??   Me?
 
(Sigh.  The sad thing is, there are more pictures of me in costume than anything else.  And barely any of those costumed moments fell on Halloween.  Like this one.  And this pirate one.  I am a proud product of my environment.)

April 07, 2009

Diabetics Running Amuck in New Haven.

I'm a road warrior ... or at least I was this weekend.  And it all started on Friday night, when I met Manny Hernandez for dinner in New Haven, and we were joined by Adam. 

Manny, Adam, and Kerri in New Haven.
 
Plenty of wine, beer, and coffee later (coffee was me - had to drive to Rhode Island after dinner), the three of us were knee-deep in discussions about Dexcoms, diagnosis dates, and our first low blood sugars.  These guys are true kindred spirits and excellent dinner dates. 

One thing that came up was our "before" and "after" with diabetes.  For Adam and Manny, they were both diagnosed in their late 20's, early 30's, respectively.  For me, I was diagnosed when I was in second grade.  Their "diabetes before" included decades of memories and a certain sense of self, not to mention memories without the disease.  My "diabetes before," for better or worse, doesn't include more than a handful of childhood memories without the disease, and my sense of self is coiled around some aspects of diabetes.

"What's better, though?  I mean, there are pros and cons to both and I don't see a definitive 'yay' to either, honestly."  I drank my second cup of coffee and let the caffeine spin around in my brain.

A lot of the people I'm in contact with that have diabetes were diagnosed in their childhood years - Howard at dLife, Christel, most of the Fairfield County dinner ladies - so they are dealing with the same "lifelong" diabetes as me.  But I've also met many late-onset type 1s - the LADA crew, as I fondly call them and then subsequently picture a fire engine - and their life-altering diagnosis must be so jarring, coming into their lives later.  Adjusting to diabetes wasn't much of a challenge for me because it's almost always been there.  I only had a year or two of elementary school before I was diagnosed.  I can't imagine finishing college and then being forced to change everything midstream. 

But I will admit to a bit of a pang of envy as I tried to remember my first low blood sugar while the guys described the recent memory of theirs.

"I'll have to ask my mom," I said.  "She'll remember." 

It's not a debate, believe me.  It's not a question of "Who has it worse?"  Type 1 diabetes, regardless of it's arrival date, is its own cyclone of discovery.  But the discussion made me realize how long I've had this and how old I'm not.  And when people talk about cures, how lives will be changed when a cure for diabetes is found, and even though I don't often think about a cure, I can't help but happily muse about "diabetes after."

I've kept the tags on for 22 years, just in case I need to make a return.  ;)

April 02, 2009

Employee of the Month.

Yesterday at lunch, I was browsing at one of my favorite stores and picking through a pile of spring sweaters.  (Buy one, get one 50% off!  I'm a sucker for a good sale.)  So I find two sweaters that are pretty and springy and have that nice, soft cottony feel that you want to rub against your cheek.

Then that feeling hits.  The one where my jacket felt warm and heavy against the spring chill but suddenly made me feel like it was a fabric tanning booth - too hot, too heavy, and like the sleeves were thick with mud.

"Excuse me?  I know it's a weird question, but do you have any juice or candy in this store?"

The pregnant woman behind the counter gave me an odd look.  "I don't ... hang on ... um, I have half of a mini Milky Way bar?  Is that okay?  You just hungry, sweetie?"

"No."  My tongue was too big for my mouth, making it hard to talk.  "Can I just leave these here for a few minutes?  I'll be right back."

Walking with determined, focused steps, I went outside to where my car was parked and unlocked the door.  Leaning in the passenger side, I grabbed the bottle of glucose tabs from the center console.  

"Damn it, two?  Only two are in here?"  The bottle was almost empty, save for two lonely glucose tabs.  I poured them into my hands and ate them at the same time, the glucose tab dust coming out and snowing all over the passenger seat of my car.

"Gee whiz," I said.  (What's that?  Not kidding you on that one?  Fine.  I dropped an F bomb right there, outside of Ann Taylor.  I have no class.)  I noticed a Panera Bread next door so I slammed my car door and walked over there, listening to the Dexcom blaring from inside my purse.

There was a line for lunch.  Four cashiers were working furiously, but the low was creeping up just as fast and my legs were beginning to buckle.

"I need orange juice.  I'm diabetic and having a low blood sugar.  Can you please help me as quickly as you can?"  I stood there in my work clothes and my coat, with my grown-up purse over my arm and started to cry because I couldn't function properly and I was becoming more and more confused.  Not sobbing, not whining, not outwardly breaking down, but big tears rolled out of my eyes without permission and headed for my jawline.  

The boy behind the counter was taken aback.  "Stay here.  Stand here.  I'll be right back.  Don't move."  He ran and returned with a glass of juice.  I moved toward him like goldfish in a pond going for crumbs of bread. 

He watched as I drank the entire glass without stopping, knowing that people in line were watching me and staring and I couldn't bring myself to care.

"You good?  You seem better already, right?"  CounterBoy answered his own question.  "You're good.  You're fine." 

I fumbled with my wallet.  "How much do I owe you?"

"Miss, it's okay.  I'm happy to pay for that orange juice myself.  Please."

"No, I'm diabetic but I have a job.  And I appreciate your help."  The novocaine of the low was starting to wear off a bit, just by knowing the juice was in my system.   "I'd really like to pay."

"Okay, let's just call it a small, okay?   That's a dollar.  A dollar is fine."  He punched the keys of the register.  "$1.05" came up on the digital screen.

"A dollar five.  Okay."  I handed him a dollar and dug around in my pocket for a nickel.  "Here you go.  Exact change.  We'reHe should be employee of the month, damnit. good."

He put the money in the register and wiped his forehead with his wrist.  "You sure you're okay?  Do you want to sit for a minute?"  A guy waiting in line mumbled something about 'flirting on your own time.'  CounterBoy raised an eyebrow.  "Sir, this is a medical emergency.  I just saved her life.  Your sandwich?  Little less important at the moment, okay?"  

He turned back to me.  "You good?"

"I'm good.  Thank you for your help.  I really appreciate it.  You saved the day, man."

"I did.  I saved the day."  He squared his shoulders.  "I'm going to be employee of the month!"

March 31, 2009

Townie Bar Meetup.

"What are you on?"Connecting with other d-folk!

Four sets of hands fumble for their hardware.

Me:  "I'm on a 522."

Karen:  "I have the other one?  The bigger one?  722?"

Erin:  "I've got Minimed, too."

M:  "Animas ping!"  (She reaches into her shirt and pulls out a pink pump.)  "I bet you didn't even know it was in there." 

Where does the question "What are you on?" get everyone to flash their pumps, other than at a dinner with fellow diabetics? 

Last night, four of us (me, Karen, Erin, and M) met up for another Fairfield County dinner at a townie bar in western Connecticut.   Despite the fact that none of us were locals, the townies in the bar accepted us and allowed us to occupy a table for two hours and chat about pumps, pregnancy, and coffee addictions.  (Dear Waitress,  Sorry I yelled to get your attention.  I was excited.  It was coffee!  I'm sorry.)  It's nice to hang with nice people who completely understand the need to briefly bleed before eating, and who get it when your "hose" is exposed. 

It has become a comforting tradition, with the attendees fluctuating dependent on the weather, the season, people's work schedules, etc, but there's always at least a handful of us who have a few hours to spare with new friends.  Note:  Beware of stories taking a decidedly non-diabetes turn, i.e. storing lipgloss without pockets.  ;)

Are you interested in meeting up?  Are you in Fairfleld County, CT?  Email me at kerri (at) sixuntilme (dot) com and we'll add you to the email list!

March 30, 2009

Trading War Stories.

It weird, because we originally connected through my diabetes blog and her diabetes podcast, and we spent a lot of time comparing war stories about our collective decades with diabetes. 

Diabetes was our introduction, but isn't the glue that holds our friendship together.

We grabbed dinner at Antico Forno in Boston's North End on Friday night with Christi and John, and I was again reminded of how good friends aren't necessarily the ones you talk with every day.  They can also be the ones who you go months without seeing but can fall right back in step with in minutes.

Kerri and Christel, reunited!

(We miss you guys already!!)

March 27, 2009

Diabetes Carnage.

I know my daily diabetes stuff produces a lot of waste, like the test strip I use every time I prick my finger and all the packaging that comes along with each disposable insulin pump infusion set. 

But it wasn't until I changed my pump and my Dexcom sensor at once that I realized how much carnage I leave in my management wake.  

Exhibit C (for crap, holy):

So.  Much.  Stuff!

If you scoot over to Flickr, you can see each item flagged in the photo, but the basic gist is that two small bits of technology attached to my body creates a lot of waste.  (The Blackberry is in the photo purely because I forgot to move it.  It isn't related to diabetes management.  Then again, with the number of emails I'm sending from that thing on an hourly basis on the climb, maybe it is.  Digression?  Yup.)

Other PWDs and parents of PWDs (POPWD?) have talked about the insane amount of diabetes-related garbage before, but this one night really showed me how so little goes such a long way - and not in a great way.  And with Earth Day coming up at the end of April, I'm extra-aware of the mess I make sometimes.  Do you guys put your stuff in a sharps container, or do you throw these things out?  I used to be so good about clipping syringe tips and filling those coffee cans and taping them shut with electrical tape, but the last few years have produced medical waste that doesn't look as "druggy" as the orange-capped syringes of my past diabetes life.  ;)

Once, in college, we had a party and threw out a lot of beer cans.  (There were seven of us in one house, okay?)  During the night, animals got into our garbage and we woke up to beer cans and - oh crap - syringes all over the front lawn.  I.  Was.  Mortified and have been paranoid ever since.  How do you guys dispose of your diabetes carnage?  I need some tips, because I'm getting sloppy.

(Also also, SUM may have some downtime this weekend, as I'm moving some web bits around.  So if you stop by over the weekend and hit a 404 or 500 error, please be patient.  I should be back up by Monday morning.  Thanks, and have a good weekend!)

March 26, 2009

True2Go Meter - It's THAT Small.

It's kind of like Review Week here at SUM, because I have a lot of diabetes-related products and goodies that I've received over the past few weeks and wanted to talk about here.

One of the items I received was this teeny True2Go meter.  Pictured heeyah:

True2Go - wicked tiny.

I am usually very good about making sure I have my on me at all times, successful mainly because I always carry a purse (even in the woods) and I am usually the group "pack mule" for any event.  Very rarely do I forget my meter, but it has happened. 

(I realize I've just tempted fate to have me leave my meter behind sometime in the near future.  Fate, please forget I said that.)

This little True2Go meter is super small, and with the meter attached to the actual bottle of strips, it's very easy to stash anywhere.  Glove compartment, desk drawer at work, mother-in-law's house, shoved into that extremely small beaded purse that your license barely fits into - teeny meter may do the job.

It seems to be reasonably accurate, and by "accurate," I mean it was just a few points off from my OneTouch UltraLink and in tune with my Dexcom graph.  For a meter the size of a silver dollar, the display is decent.  It took longer to show my result than I'm used to, but it eventually popped up on the screen after 15 seconds or so, I think.  

For true travel convenience, I could just throw a lancet into the strip bottle and be emergency-ready.  I used my OneTouch lancing device for most of my tests, though.

Having different meters is nice, for convenience, but the main drawback is that most insurance companies only cover one kind of test strip.  For me, my insurance covers my Lifescan strips, but they aren't hip to covering a second brand.  I have used a Lifescan meter for several years now, but I wonder how much of that is due to the fact that I have a stash of strips already, whereas I don't have any more of these little True2Go strips.

Points to ponder.  But this meter definitely gets high marks on size and portability, and I daresay it's a bit cute. 

For a few photos with the meter in a size comparison pose-down with my UltraLink and the ubiquitous quarter, scope out Flickr.

March 24, 2009

French Fried.

Chris has a crush on these things.Last weekend, Chris and I went out on Saturday night for his birthday.  And because he is a Francophile and borderline crème brulée addict, we revisited an excellent French bistro in Brooklyn (that we were introduced to by some wonderful friends). 

We drove in a found a parking spot right across the street from our destination (stroke of freaking good luck, that)- Moutarde in Park Slope, and we were right on time for our 8:30 reservation. 

And we ate.

Oh how we ate.

We started with slices of celery and peppers dipped into an array of spicy mustards.  There was freshly baked french bread with creamy butter.  A shared appetizer of escargot, entrees of duck confit and hanger steak with frites (read: fries) - we were beyond indulgent.  To round out our meal (and our bellies), we had not one, but TWO desserts - crème brulée and two profiteroles with ice cream and covered in warm chocolate sauce.

My blood sugars were screaming at the very notion of these noshes. 

"Nooooo!  Kerri!!!   You'll end up at 400 mg/dl, stupid!"

"Quiet, you.  I'm having a night off from your hollering."  

My husband and I cleaned our plates and topped our meals off with coffee (me) and cappuccino (Chris).   

"So how is your birthday going?"

Francophile Sparling leaned back in his chair, smiling.  "This is great.  I loved this.  I love French food!"

I reached into my purse and consulted the Dexcom, to see if my numbers were started to go berserk.  I saw a flatline - 142 mg/dl and steady.  

"Dude, I think I did this right.  After all that food, I'm barely 140."

"Nice.  Can we get another profiterole?"

I love a good night out with excellent food, excellent company, and excellent blood sugars.  A few hours later, when we were climbing into bed, I checked the Dex again and saw that I was 103 mg/dl with a little arrow pointing straight down, showing that I was falling slowly, but still falling.

Meter confirmed:  97 mg/dl.

"Bah.  I must have over-bolused.  I'm going to grab a swig of juice."

Face-planted into the bed and slowly digesting thousands of French calories, Chris murmured "Mmm hmm."

I took a drink from the grape juice bottle by the bed and settled in beside him, feeling cocky about our indulgent dinner and it's lack of effect on my numbers.

So didn't I feel like a tool when the Dex started singing at 5:30 in the morning, announcing my 271 mg/dl to the entire room?   Sweaters on teeth, that instant "Oh my God I have to pee" feeling, and my tongue weighing about 8 lbs - the whole mess. 

I never, ever remember that the fat hits my blood sugars so much later.  (And we ate a lot of fatty foods!)    Stupid overconfident Kerri.  You done been French fried.

"Kerri, we told you.  We so told you."

"Enough!  I am fixing this now and besides, it was worth it." 

"The high?"

"Nope.  The crème brulée!" 

March 23, 2009

The Born-Again Diabetic.

William "Lee" Dubois and I have been blogger buddies for years now, from when I came across his blog back in 2005 when he was writing about his experiences with the old Medtronic Guardian RT system.  Diagnosed with type 1 at he age of 40, he's one of the original diabetes bloggers.  (He's called me the "diabetes whack-a-mole" for a long time, because I keep popping up.  And I think I may always call him "Printcrafter" in my head.)

I've always been a fan of his writing, and now I'm happy to hold his book in my hands.  Will sent me a copy of his book a few weeks ago - The Born-Again Diabetic:  A Handbook to Help You Get Your Diabetes In Control (Again).

Will's book.

Just as I had expected, and hoped, Will's book is written in the same totally accessible, completely approachable style as his blog.  He may be a diabetic and a diabetes educator, but he's truly a "diabetic of the people," as exemplified by the very title of Chapter 1:  What the hell is diabetes, anyway? 

Throughout the course of Will's 14 chapter journey, he takes us through diagnosis, diabetes hardware like meters and CGMs, A1C tests, the differences between type 1 and type 2 diabetes, oral meds, insulin, and the gritty chapter called "Sex, Drugs, and Rock & Roll."   

Okay, so this all sound familiar, right?  Same sorts of topics, same rehashed information, same ... disease, right?  That everyone else and their grandmother has written about?  Yes indeed.

But what makes this book different is that it is actually readable.  In my job and through blogging, I've been sent many books from publishers and authors, and I have to be honest - some are an effort to plod through.  With Will's book, it was like having an old friend (Not OLD, Will, but more like longtime.  Don't send me a nasty email.) explain diabetes to a coffeehouse of people, and I'm sitting there laughing, nodding, and going, "Yes, that's right." 

"What else affects my blood sugar, you ask?  Why everything, of course! What do you know about the Chaos Theory?  Yeah, I don't know much either, I can't even balance my checkbook.  But as I understand it with my third-grade grasp  of mathematics, Chaos Theory is a way of explaining the interactions of events in complex environments with lots of variables. It's the whole a-butterfly-flaps-its-wings-in-Mongolia-so-it-rains-in-Flagstaff kind of science."  - pg. 81

Diabetes is about life.  About friends.  About lauhing at the moments of extreme management and making sense of the true chaos theory that is this disease.  Will's book has done well in capturing some of those moments and making diabetes seem more like a disease you have to know and accept in order to control.

And as the diabetes whack-a-mole, I agree.  :)

Note:  If you want to order your own copy of Will's book, visit his blog and click through on the order link.  And tell him I said hi!   

March 20, 2009

Dexcom Seven Plus: First Impressions.

So far, so good.

Last night, I installed my first Dexcom Seven Plus sensor.  "First" might be a bit of a misnomer, because the sensors that actually go into my body are still the same as the ones I used previous.  I have a new transmitter (the little plastic part that clips into the sensor housing) and a new receiver (the external device), which are the pieces that have been upgraded.  

Dexcom has a good overview of the new system and its features, including a video that walks you through the upgrades.  They can give you all the technical jargony stuff.  :)

For me, I've put this new sensor on my left thigh and after the initial pinch, I was good to go.  The hardware on the Seven Plus works almost exactly like the old system, with a two hour calibration period, same sensor insertion devices, and the same general gist.  What's new is the software inside the receiver.

When I tried out the Minimed system last year, I liked the fact that the MiniLink had rate of change arrows on the CGM.  So when I looked at my pump, I could see my blood sugar graph and could also see if I was plummeting or rising quickly.  I was sorry that Dexcom didn't have this option before - but now they do.  The new Seven Plus has those rate of change arrows, and you can also set an alarm to BEEEEEEEEEP (if you want) when you're rising or falling too quickly. 

Oh so dexy ... I mean, sexy!

And regarding BEEEEEEEP!s, there are more beeping options on this thing, too.  You can set an alarm for a high, low, rise rate, fall rate, and sensor out of range (i.e. when the cat takes off with it in the middle of the night and you don't realize it until you wake up without it).  There are snooze alarms for the high and low levels, so I have mine set to BEEEEEEEP! at a low and then give me 30 minutes to correct and climb, instead of beeping its head off every five minutes for hours.  (Nice.) 

Another feature that's been added is the ability to add "events," like exercise, food, insulin doses, and health info - much like the One Touch Ultra meters.  I've been consistent so far with entering this info (read: it's only been 12 hours with this thing attached, so I'm in a bit of "new device euphoria" and I have no clue if I'll stick with being so tuned in), and if I can keep up, it will make the records from the Dex pretty comprehensive.

Dexcom 2 Software screenshot.  Sorry this caption wasn't that interesting.

The software is pretty good this round, able to download information from past sensors, instead of just the most previous one.  I took some screenshots of the software and gave my notes on Flickr, because honestly, I'm not terribly techy and writing on and on and on and on ... zzzzzzz ... and on about software upgrades could make me yawn my face off.  Overall, the software is good and tracks what I need it to track and if I was able to make my patient profile avatar into a picture of Siah's head, I would.  You know it.

Overall, I like the upgrades.  And the upgrade is universally available to all Dexcom users (EDIT:  It's available immediately to all new customers.  Existing ones can get it in May.  I'm not sure why that is, but if anyone from Dexcom is reading and wants to leave a comment, please do!), but I don't know the details of insurance coverage and cost.  I am glad that Dexcom is willing to push out new options as they become available, instead of waiting for a full device overhaul.  I'm hopeful that the next round of developments will help reduce the size of the sensor and the receiver. 

I'll let you know next week how a few days worth of experience with this system feels, but in the meantime, feel free to check out my Flickr photos of the Dexcom Seven Plus.  If you have questions, I'll do my best to help.  (Keep in mind:  I'm slightly clueless.)

Now I'm heading to work in this snow squall (WTF?) - what is that about?  I thought today was supposed to be the first day of spring??  More later!

[Dexcom disclosure]

March 18, 2009

Knot What I Expected.

I have to admit - I'm pretty satisfied with this longer tubing option.  Maybe I'll be more annoyed in the summer when I'm sporting fitted clothes and no trouser socks, but for those freaking freezing months with bundly sweaters and long pants, I'm content to have an extra 20" of tubing. 

Thing is, I tend to get tangled in it when I take off the pump.  I guess I bunch the tubing together and just shove it in the waistband of my pants or, if I'm rocking the sock, it stays smooth as it travels down from my hip to my ankle.  But when I disconnect to shower or go to the gym, the tubing becomes a knot of chaos.

Exhibit A:

Knot a clever caption, either.

How did this happen?  It was on the bureau for exactly 20 minutes - just for a shower! - and when I went to snap it back into place, the whole damn thing was knitted into this insuiln pretzel.

(Should I mention that it also was wrapped around me, and Prussia the Cat, this morning?  I woke up to find the cat pressed against my side and the pump tubing casually looped around her paws.  Thank goodness she didn't pull a Sausage and bite through the thing.) 

It's weird to look into my diabetes supply closet and mentally map out my tubing options.  Now that the weather is starting to warm up a smidge, I'm thinking about packing up my winter coats and my wool skirts in exchange for my spring sweaters and dresses.  Long tubing works well for using the sock trick with a lower back infusion set, but it could be a pain in the everything when it comes to tucking tubing in a springy warp dress.  I'm planning to switch back to the 23" tubing in a few weeks.

I can't wait until the weather is warm again.  I've had a freaking-nuff of the snowy stuff.

March 17, 2009

St. Patrick's Day and Diabetes.

Yay for frosty glasses of beer!  And for frosty snowmen.Come on, like you didn't see this one coming.

So just about everyone in my office is wearing green today, and there's a certain jolly, slightly-inebriated vibe to the place.  (No, we're not drinking.  Yes, we should be.  No, I don't have a flask strapped to my thigh, thanks.  That's an insulin pump.) Don we now our green apparel, right?  Our kitchen is stocked with Irish soda bread, and the stuff is tasty.

Seems that attentions turn to drinking and diabetes when March 17th rolls around.  dLife has a whole section dedicated to the diabetes and drinking, I've written columns and blog posts about it before, people are polling the blogosphere about their drinking habits, and there are even quizzes you can take that touch on the topic.

I've always found that even a little alcohol can make my blood sugar tumble a few hours later, which is the thing that makes drinking a pain in the arse.  Even when I have a drink or two (and subsequently get buzzed because I'm a lightweight), I need to make sure I down some carbs before bed to help keep the lows from attacking on the overnight.  I've talked to a lot of other diabetics about this, and it seems to be one of those "your diabetes may vary" (hat tip to Bennet) moments. 

Personally, I have never been much of a drinker, and there were so many nights in college when I opted for diet soda or coffee instead of a beer.  But as I've grown a bit older and considerably more responsible, I have begun to appreciate a nice glass of wine or a few beers with friends.  It sounds irresponsible to some, but I figure that as long as the drinks are infrequent and well-monitored, it's okay to cut loose once in a while. 

Like tonight, maybe. :)

What are you guys doing to celebrate St. Patrick's Day?

(Sidenote: Today is both my father's birthday and our editor-in-chief's birthday.  So happy birthday to both!)

March 16, 2009

The "Ellipmachine."

The Ellipmachine ... by Mennen.When I was preparing for our wedding last year, I spent a lot of time at the gym.  A.  Lot.  As in, too much.  If I wasn't at work at dLife or doing wedding-esque things like cake tastings, dress fittings, and bridal shower fun, I was working out and doing my best to keep the stress from fattening me up.

Fitness was my priority.  

But after the wedding, other stuff started to crop up.  Weekends home in RI.  Travel for work.  Writing projects that required lots of attention.  New focuses at dLife.  Every day was this whirlwind of chaos and while I've been having fun and being very productive, my days at the gym were harder to come by.  Before, I was working out faithfully Monday - Friday after work.  But "life stuff" kept cropping up, and suddenly I found myself at the gym only four days a week.

Then it all became a perfect storm of distraction.  I was working late on dLife initiatives.  I was answering emails from my Blackberry into the wee hours of the night and sleeping less.  My wrist exploded in a fit of tendinitis and low blood sugars returned to my life with a renewed sense of determination.  Piles of snow kept falling and the gym kept closing, and on other days, I worked too late to get to the gym before it closed.

My time at the gym went from frequent and intense to only four days a week and pretty remedial.

Not okay, because my body wants to be fluffy.  It may be a family gene pool thing and it might also be exacerbated by diabetes factors, but if I sit still and let nature take its course, my body wants to be a happy 15 lbs heavier.

I, however, do not agree.

But I was frustrated because between feeling stressed and having lows again, my caloric intake far exceeded my burn off.  Thus, I lost any semblance of abs.  (Shame, too, because I liked them while they were there.)  So, in effort to reclaim my abs before I get pregnant and become a happy beach ball swallower, I did my part to stimulate the economy:  I bought an elliptical machine.

Or, as I keep calling it by mistake, an "ellipmachine."

It was delivered and assembled last Monday morning, and I called Chris (who was on business in California last week) to tell him it had arrived safely.  

"It's here!  The ellipmachine!"

"The what?"  

"I mean the elliptical."

It's a nice machine - very smooth and not clunky as to annoy our downstairs neighbors (I do not want to become Shoes) - and I used it every day last week for an hour.  Now I'm able to go out with my coworkers after work for an hour or two and still manage to slide a workout in.  I am also hoping to use it in the mornings (provided I'm able to get to bed at a reasonable time and eek out a 20 minute workout in the am).  My main hope is to reclaim the level of fitness I worked so hard to achieve before the wedding but lost a bit due to that pesky "life stuff."  

Last week, while Chris was out of town, he called one night and I answered, panting.  

"Hey baby ... what are you doing?"

"Dude, I'm on the ellipmachine."

I could hear him laughing.  "The ellipmachine, eh?"

"Oh you know what I mean."

Here's hoping that the ellipmachine can help me get a workout in even when my schedule wants to thwart my good intentions.  I'm ready to battle.

(Take that, early gym closings!  En garde, late nights at work!  Pffffft, snow days!  Come back, sort-of-abs!) 

March 13, 2009

My Mom Says Hi.

I love my mom.It's no secret that my mom is a huge part of my success as an adult with diabetes.  Her support, even when I rebelled against it with all my might, has made me confident in dealing with whatever diabetes has to throw at me. 

My mom has guest posted here a few times in the past (here are her archived entries), and she's offered to share her perspective again.  Reading her posts makes me think about how much the parents of kids with diabetes work so hard to maintain our "normal." 

From My Mom: 

Hello ... Kerri’s mom here! From time to time, Kerri will ask me to do a guest post.  What prompted me to post at this time is her recent blog regarding her old childhood journals. (Yes, she could write like a champ way back when. It’s always been a gift she has possessed.)

The fact that Kerri went to Clara Barton Camp from the time she was diagnosed until she was too old was a blessing in that I was able to hand over the responsibility of her medical care to a very capable and trusted staff at the camp. I don’t think I ever thought of it as “ok, now we can be normal for two weeks.” Maybe her siblings thought there would now be more sugary, tasty treats available during those two weeks that were not hidden in frozen bean boxes.

Parents are responsible for the well being of their children from birth to when they  are able to live on their own. (Not that it stops us from worrying.)  Throw diabetes into the mix and it can be overwhelming at times. We love our children and would do anything to keep them safe and protected. It is our “job.” I looked at sending Kerri to camp as a benefit to everyone in our family. She could bond with children who deal with the same issues she did on a daily basis. They can complain about how over protective their parents are and that we don’t understand what it’s like. No, we don’t, but as a parent these children don’t understand the fear that is ever present in our minds. Will we handle their diabetes care well enough to ensure that they don’t have serious lows or highs? Have we done enough to protect their future health from diabetes complications. It’s a scary ride we parents are on. I guess until they have children of their own … they can’t know how we feel just like we can’t know what it’s truly like for them.

Kerri used to get upset with me when I would say things like “we have to do a better job at…” She said it wasn’t a “we” disease, it was she who had diabetes. I beg to differ! When you are trying to protect your child from the consequences of diabetes or any disease it does become “our” disease as well. How can we let anything bad happen to them? You become the Lioness protecting her cub! I thought I was the only one that knew how to take care of her and I didn’t insist that others help out. If I could go back in time, I would certainly rethink that one! Everyone needs a support network. In a way, Clara Barton camp was that for me.

I needed that two week camp time to regroup. To take a mental health vacation. While she was at camp, I would often wonder how she was doing. How were her blood sugars running? Was she having fun?  But I can say that I wasn’t worried. She was in good hands. We both felt refreshed when camp was over. Kerri would come home having forged some long lasting friendships. She was more confident and determined. Camp allowed her to share feelings with other kids who understood what it was like to live with diabetes. No worries about acting weird when low…they all had been there and done that!

I lost my job as “Protector of the Kerri” a long time ago. She is very capable of handling her life and health. Will I always worry about her? Yes, like I do with all my children. That’s normal. But she is very fortunate in that she is married to Chris. My mind is at ease ... he is my Clara Barton camp!

Thanks, Mom.  For everything. 

March 11, 2009

Diabetes Back in the Day.

Last night, I found a box of old diaries.  I've been keeping a paper journal since I was seven years old and I have so many hardcover journals with cats and flowers and balloons on them, my handwriting maturing as steadily and awkwardly as my content. 

It's strange, though, to see how little focus I put on diabetes in my previous journaling.  Most of my earlier journals (eight, ten years old at the time) talk about a boy I had a crush on in fourth grade or roller skating on the weekends or battling with my brother and sister.  But there were a few entries in particular that spoke to life with diabetes.  And while I'm not quite ready to recount the long, dramatic entry about my first kiss (gah!), I wanted to share snippets of my diabetes diary from my teenage years (these entries are from when I was 14 and 15):

May 13, 1993:  Beavis and Butthead is over.  It was strange, because they were in school and in home economics.  Their assignment was to carry around a back of sugar as a "baby." But Butthead said he couldn't do it because he was "diatetic."  The teacher reprimanded him by saying, "That's DIABETIC, and yes you can do this."  I'm not exactly sure why, but that comment bothered me.  Alot.  I think it's because I'm so sensitive about being a diabetic.  It makes me wonder how handicapped people feel about 'HandyMan' on In Living Color.  If I feel offended about an off-handed comment, how would someone else feel about a recurring segment?

Was this one of the first moments of diabetes in the mainstream media that I can remember?  I honestly can recall being affected by this, and wishing Butthead had said "diabetes" correctly. 

June 27, 1994:  Today, my mother was talking with [name redacted] about diabetes camp and I couldn't help but overhear.  She said, "As soon as Kerri left, we all relaxed and lead a normal two weeks free of worries and medical stuff."  Am I a burden to my family?  Do they resent my diabetes?  Do I have a "normal" life? 

This isn't to call my mother out for saying this.  I've heard a lot of parents say the same thing about the weeks that their child is away at diabetes camp.  Diabetes requires parents to think on their feet all the time, so the reprieve of having their child away and under constant and capable medical care must have been such a nice break. 

Funny - I've always wanted a break from it, too.

July 6, 1994:  I leave for Clara Barton Camp on Sunday.  I love camp.  We are all incredibly goofy and loved.  It is such a cool feeling to have people who understand it to talk to.  Sometimes I feel alienated at home because I am the only diabetic around.  No one seems to understand the emotions I feel concerning diabetes.  I am frustrated and angry sometimes, and other times I feel bad for myself.  Sometimes I even want sympathy, and that's confusing because I say I don't want to be treated differently at the same time.  It's weird, though, because I want to be able to control every aspect of my health, so when my health emotions get all crazy, I feel like I'm going nuts.  At least at CBC I'm not the only one who feels that way.  If I tried explaining that to my friends, they'd look at me like I was nutso.

Ah, my longing for a diabetes community, even before I knew there would be one online.  :)

And this paper was shoved into my diary from 1991, written on school paper and smelling softly of pencil boxes and recess.  It speaks volumes about how much a 12 year old kid grasps about guilt and diabetes:

A 12 yr old's diabetes to-do list.

It's a lot to carry.  I felt so alone.  And as I read through these diaries late into last night, I was again grateful to know I'm not the only person out there living with this.  The power of this community is tremendous.  I also realized how everything has changed, but at the same time, nothing has changed.

(And some embarrassing diary snapshots coming soon ... once I get the guts!)

March 09, 2009

Diabetes + Stem Cell Research = Hope.

Go Bama!  Go Bama!Chris and I were talking the other day about something completely random, when he turns to me and says, "Oh, wait.  Did you hear that Obama is signing that bill to reverse the ban on stem cell research?"

"I did."  

"So?  Are you excited?"

And I thought about the last two decades.  How the veiled promise of "five more years and then ..." and still nothing. 

"I'm hopeful.  You know me, baby.  I'm almost always hopeful, but until it's actually real ..."

He gave me a grin.  "We just keep you healthy and hoping, right?  Well, this is a huge leap forward."

And today, we leapt as President Obama reversed the ban.

We'll keep hoping.  With the JDRF actively leading (and Tweeting!) the charge, and with diabetes on the national stage, progress could actually be made.  Not just a product redesign or another clever device, not just another type of insulin or another pill - real progress.   

I'd love to go from "type 1" to "type: cured." 

(I've been itching to use the past tense for a long time now.)

March 06, 2009

Kerri's Diabetes Technology FAIL.

I've had about three solid weeks of good blood sugar control, with just one or two lows and not many excessive highs.  I celebrated regularly, because this kind of even keel isn't common for me.  And because I'm in hot pursuit of a lower A1C.

So you can imagine my frustration when I had a 400+ blood sugar with no detectable cause - until I realized the pump tubing hadn't clicked into place properly after my shower.  (Something about the sweaters on my teeth and the fact that I was falling asleep face-first into my laptop didn't tip me off, apparently.   I had to wait until the realization of "Hey, haven't you peed three times in an hour?" hit me in full.)

Kerri + Diabetes Technology = FAIL.

(And also, be on the lookout for "fox paws." You'll see what I mean.)

March 05, 2009

I am Spam. Spam I Am.

F spam.Well this has never happened before.

Click.

Subject line:  diabetes 

Email:  rid myself from insulin lowered glucose from 600 mg/dl to avg of 69 mg/dl to118 mg/dl with an A1C reading from11.8 to 5.8 in 190 days check it out [name and URL redacted] doesn't cost a thing...hard to believe but that's life.... 

Fantastic.  Another spam peddler.  But I'm not looking for a war this morning, so I just filed it into the email folder called "Spamtastic" and proceeded to check my other new messages.

Click.

Subject line:  sorry

Email:  I email you before I read your blog sorry that you have a difficult life with diabetes 1 and am sorry I tried to help by referring a wed site to you as you stated "don't e-mail you with snake oils" it's just that somewhere somplace there is help for us for me it's the referral, Your so positive please stay that way and keep helping others as i shall. Sorry for imposing on you

Wait, what?  An apologetic spammer?  They read the How to Pitch to Bloggers post and the one about snake oil?  And they admitted that they spam people for the referral bonus?  Someone who is sorry that they imposed?  And bothered to email me to follow up?

This is a milestone.  I'm not sure what kind, but it's definitely never happened to me before.  Are we getting through to these people?  Are our raised voices actually being heard?

February 26, 2009

24 Hours with Diabetes.

This clock is obviously wrong.  Should say 7 am.7:00 am:  The alarm goes off for the first time.  I stumble from bed, find out where my pump has landed during the course of the night, wander off to the alarm clock, bang my hand against it, and then shuffle back to bed to claim another 9 minutes of sleep.

7:09 am:  Alarm goes off again.  Snooze one more time, grab my meter from the bedside table, and hope to test when it goes off again.

7:16 am:  Okay, this is it.  No more snooze, test blood sugar. Whatever the result, it kind of sets the tone for my day.  I’ll correct it, treat it, or celebrate it, depending on the number.  Calibrate the CGM, disconnect the pump, and head off to the shower.

7:20 am:  Connect CGM to my bathrobe on the bathroom door so it’s close enough to pick up a signal while I shower.  Shower quickly so I’m not disconnected from the pump too long.  Carefully dry off to keep CGM sensor and pump site from becoming loose.

7:30 – 8:15 am:  While getting ready for work, put at least underpants on to have something to hook the pump to.  Dress in clothes that make me feel comfortable, fashionable, and able to wrangle in any diabetes technology I’m trying to wear. 

8:20 am:  Grab enough snacks to get me through the day, but make sure the food is d-friendly enough to keep my numbers in line.

8:30 am:  Drive to work.  Check the CGM to ensure I’m not sailing out of range.  For the record, my car has glucose tabs in the glove compartment, in case I go low.

8:45 am:  Time to buckle down.  I’ve got my coffee, my computer, and my meter at the ready.  During the course of my morning at work, I’m testing my blood sugar every hour or so to make sure I’m in range.  Sometimes the blasted dawn phenomenon grabs me and I end up fighting a high for hours.  Other times, a tricky little low sneaks up on me and I have to down some juice and then muddle through the aftermath.  And lots of times, my body behaves and numbers hold steady.  But I still have to check and confirm this, so I’m still actively maintaining diabetes stuff.  And I usually have a snack in the morning at some point. 

Noon-Thirty: 
Lunch time.  I test beforehand, I react to this number, and I try to anticipate what I’ll be eating for lunch.  Most often, I eat carbs at lunch, either in the form of a sandwich or soup or something like that, but food is always consumed at this time.  (I get hungry!)  

1:30 – 5:30 pm: 
Work afternoon.  Looks a lot like the morning, only for me it tends to be a little more even with blood sugars and a little less even with stress levels.  (Something about the afternoons at work tend to bring on the meetings, wacky emails, etc.  Either that, or maybe in the morning I’m too sleep to mind the difference.)  Lots of testing blood sugar and/or scoping out the CGM line during this period.

6:00 pm:  Homeward bound.  But it’s not over, yet.  From here, I have about 30 minutes to change up to head out to the gym, and make sure my blood sugars are high enough to take on an hour of exercise.  (This is one of the only moments in my day when I’m intentionally a bit higher.)  Aiming to be at around 180 mg/dl, I head off to the gym toting my bag crammed with my meter, music, water bottle, CGM receiver, and a fast-acting glucose stash. 

7:00 pm:  (We’re here already?  Man, this day goes by fast.)  Gym is ovah.  Time to test before heading home to see if I need to act on a number, make sure I’m good to disconnect and take a shower. (Yes, two showers.  I hate to stink.)  A shower is followed by dinner.  Dinner is followed by testing.  Testing is hopefully followed by sugar-free pudding with cool whip or something.  ;)

From Dinner to Bedtime:  Evenings are sort of status quo, with lots of options.  Heading out for a movie?  Going into NYC for the night?  Grabbing a drink downtown?  Staying home and working on computer crap?  Perhaps some [hey, something shiny!]  Or grocery shopping, changing out the CGM sensor, cooking (ha!) ...  Whatever the hours of my evening are filled with, I’m still keeping close to my meter and maintaining an eye on my body.

Before Bed:  Go through the whole before bed routine (washing face, flossing, brushing teeth, fighting to keep the cat out from underneath the bathroom sink), and then head into bed.  One of the last things I do every night is test my blood sugar and check my pump reservoir and battery life to ensure I'm good for the night.  After that, I try to fall asleep, with all hell usually breaking loose when the cats run races at the foot of the bed around two in the morning.

Sleep:  Awesome.  Hopefully, there aren't any hypoglycemic episodes throughout the night.  If there are, the Dexcom usually BEEEEEEEEP!s until I wake up.  (No snooze button on that thing, that's for sure.)

7:00 am:  Lather, rinse, and repeat. 

A team of students contacted me and asked me to tick through a day in my life with diabetes.  I tried to do a standard day - one without a wicked low or high - but it's hard.  Variables come raining in from everywhere, and it's nearly impossible to account for all of them.

I've written those kinds of "day in the life" posts about diabetes before, but they never really capture what can and does happen.  I even attempted to do a video, but it didn't cut it, either.  It's hard to show how much instinctive management comes into play, like those moments when we don't realize we're managing diabetes (but we are). 

How would you describe a day in your diabetes life?  Or, when you try, do you get tangled in the same set of variables?  How do we describe something so random and far-reaching?

February 25, 2009

Diabetes Snake Oil.

Snake oil - he haz it.There is no way I’m going to name the person who contacted me, nor would I even think about linking out to their ridiculous product.  But I received an email over the weekend from a tool who I will call Peddler.

Peddler started their email to me by saying, “Hello Kerri.  You can cure diabetes.”  Then there was a link to a YouTube video.  (With instructions on how to cure me, I assumed.)  I clicked through and watched their video and did the whole “rolled eyes” routine.

I am a relatively well-educated patient.  I am by no means a doctor, but I could pretend to be one for at least 8 minutes (until someone asks me to recommend treatment options or draw blood, and then I pass out and they find out I’m a lowly editor).  False claims of a “cure” don’t sit well with me, so I decided to email Peddler back and see what kind of web he would weave.

“Dear Peddler.  I have type 1 diabetes.  I have been diabetic for over 22 years.  Are you telling me I missed a cure?  Best, Kerri.”

His response:  “Yes, it must be possible.  Although it’s not easy.  Did you watch the video?  You can try [product name] and [other product name] to cure diabetes type 1?  The [product 2] keeps my blood sugar between 5 – 6 (European measure).  When normally it will go like a roller coaster.  It are the most advanced products ever made.  I use them myself.  You can find them here.  [Link]. “

My goodness. 

My response:  “You can cure my type 1 diabetes when no doctors at the Joslin Clinic, no researchers, etc. have that ability?  Can I stop taking insulin when taking your recommended product?  My body doesn’t have active islet cells – you can reverse this?  How much does your product cost and what is your personal involvement?”

Peddler’s response:  “No sure, you can’t stop taking insulin.  But if you take the product it might reverse it over time.  I have absolutely no involvement into this.  I just use it myself.  Have been looking for years to try and find a cure myself.  But you must read the information and watch the video.  But there are a lot of products and research outside of the conventional research.”

Then Peddler loses it a little bit, emailing again:  “[Another guy’s name], the health ranger, healed himself of type 2 diabetes through dieet and supplements.  You can read a lot of information on [website].  Do you know anything about farmaceutical companies and their research?  They only want to make money.  They cannot use natural vitamins and minerals because they cannot pattent them.  It’s a big money industry.  I was a shareholder, been very active on the stock market.  I know a lot about these companies.  It’s just like the oil industry.”

The snake oil industry that wants in on my “dieet” and “pattents” and “farmaceuticals?”  And what the hell is a "health ranger?"

I emailed him back:  “It will reverse my need for insulin?  Type 1 diabetes means my insulin-producing cells were attacked by my own immune system.  This product can reverse my own auto immunity?  I am shocked.  Are you involved with this supplement company, because I have to be honest - I doubt the integrity of your intentions.”

Radio silence.  Maybe he had to call back the Mother Ship for guidance. 

Then Peddler comes back out at me.

"Ok, no I'm really not. I'm 27 years old, working in a pipe factory here in Holland. I really am not involved into this company,  I'm a person just like you."

Then he sent me YouTube clips of different people talking about the supplement, and others of people showing how a certain diet plan "cured" their diabetes.  How if I just authorized some payments from my PayPal account, I'd be right ready for a life without diabetes.  (Come on, Mr. Pipe Layer from Holland.)  After clicking around for a while, I had a good sense of how much snake oil is being peddled to people with diabetes. 

And the thought made my stomach spin.

I can't help it.  This shit makes me crazy!  Don't market your false cures to me.  Nothing I eat is going to cure me.  No amount of raw vegetables or coffee or protein powder or amino acids or special high-fiber, low carb, strapless, backless nutrition bars.  Unless you have a way to keep my immune system from taking out my body's own insulin-producing cells, do not email me.  Stop preying on people with diabetes.

And for crying out loud, use spell check, would you?  

February 23, 2009

Health 2.0 and Bloggy Bits.

I'm so blogging this.  Dude.I wrote this post on Diabetes Daily a few weeks back, but I wanted to share this here, too.  When it comes to patient blogging, there are plenty of people who want to know more and who benefit from the collective sharing of our stories … including those of us who are blogging:

Who Benefits From Patient Blogging?
 
I blog, therefore I am … a better diabetic?

Not exactly.  Even though I’m blogging about diabetes, I am not “a perfect diabetic.”  My blood sugars still ping all over the place at times and I’ve confessed to consuming more than my share of E.L. Fudge cookies.  I am not a perfect patient, and I won’t ever be.  (Is there even such a thing?)  Blogging about a disease doesn’t make me any less “diabetic.”  There is a misconception about patient bloggers – that we have it all figured out.  

Patient blogging is so powerful because it isn’t about finding perfect control or flawless diabetes management, but about sharing what real life with diabetes is like. This was a topic I blogged about early last week and the response from the community was overwhelming.  Patient blogging brings people with diabetes together, confirming time and time again that we aren’t alone.  It’s about sharing best practices and little coping mechanisms and those resonating moments of “Hey, me too!”  It’s the support community we need when diabetes becomes a little “heavy.”

But patient blogging doesn’t just benefit the patients.  Writing daily about diabetes has connected me with doctors who read to better understand the challenges of diabetes “au natural.”  Even though they take care of us and help us make sense of our medical condition, the closest they get to “understanding” is through our blogs.  Patient blogs offer a window into the personal side of disease management, one that our doctors wouldn’t see unless they bugged our homes or camped outside our windows.  By simply tuning in to the lives of bloggers who represent their patient base, doctors can better understand, and better treat, their patients.

My own doctor at the Joslin Clinic reads my diabetes blog.  Sometimes she emails me links to articles she’s come across that speak to my personal goals.  Other times she helps me out with things like insurance appeal letters.  She knows what kind of insulin I’m on and how I attempt to dose.  But through reading my blog, she also knows that there is so much more to me than my diabetes.  She sees stories about my life – my wedding, traveling, stupid cat stories – intertwined with diabetes moments.  It’s not just managing my diabetes specifically, but helping me manage diabetes in my life as a whole.  

The beauty of patient blogging is that it touches so many lives:  the doctors who want to learn more about their patients, the parents of children who cannot yet describe how they feel; the spouses of people living with this disease; the friends and families; the readers who tune in every day; and the bloggers themselves.  “Health 2.0” and other buzzwords don’t properly capture the positive influence of the diabetes community.  Through these moments of sharing, we learn from and support one another, and live fuller lives as people with diabetes.

And my health - my life - is better for it.

Thanks for hosting my post, Diabetes Daily, and feel free to share how you've benefitted from patient blogging, either as a blogger, a reader, or as a medical professional.

February 19, 2009

Length Matters.

Since I started pumping back in 2004, I've been using the Minimed Paradigm Quick-Sets with 23" tubing and a 6 mm cannula.  (For folks who aren't pumping or who have no idea what I'm talking about, the tubing is the part of the pump that connects the physical pump to the infusion set on my body.  The cannula is the tiny plastic tube that goes into my skin.)

I'm a creature of habit and I'm pretty resistant to change.  But insulin absorption has been crummy on my thighs lately and I've been trying to use my lower back "real estate" more often.  

Thing is, the shorter pump tubing doesn't reach from my back to my sock - no sock trick on those days.  And while I liked the reliable absorption of a new site, I still prefer to keep my pump on the downlow - literally.

So I sucked it up and made a change to my last order of pump supplies: 

A little tubing goes a long way.

Cannula is the same length, but the tubing is 20 " longer.  Now I can wear the pump on my back and still snake the tubing down my leg and into my sock

This tubing is looooooong.  It took over 13 units to prime (versus the 6 1/2 units for the 23 " tube).

The stuff is long enough for the pump to not only hit the floor if it happens to drop from my hand while changing, but even has enough slack for the tubing to coil around like a snake.  It's also long enough to become completely tangled in while changing into my gym clothes after work.  Long enough to take over a full minute to check for air bubbles. 

It's long enough to wrap around my waist and tie into a jaunty bow. Long enough that I can leave my pump on my desk at work and make it home without missing a unit. Long enough that I could knit up a freaking scarf with this tubing and still have enough left over to go fly fishing.

This new tubing gig is just about 2/3 the length of my whole darn body!  I feel like I'm part spider, weaving this weird insulin-filled web.  But this new length option is letting me explore different infusion site real estate while keeping with my fashion preferences

It's all about hitting a blood sugar stride ... and not having my pump fall into the toilet in the process.* 

(*Kerri: 40,800, Pump: Almost 3.)

February 18, 2009

Blood Sucking Meter.

Normal blood sugar test:  Unzip meter, put s strip in it, wait until it gives me the "Hey, apply blood now" signal, and apply a droplet of blood.

This has been the routine for years now.  

So imagine my surprise when I put in a new strip, got the go ahead, and applied a blood sample only to have the meter continue to grin at me.

This meter is so confused it must be related to the cat.

"Apply blood!"

Okay.

Blink, blink.

"Apply blood!"

Um, we tried this already.

"Hey, um ... apply blood!"

"Meter, I already did this.  Count down already, would you?"

Blink.

"You have enough blood on there.  It's good to go.  Give me a result!"

"I like ... your shoes?  Apply blood!"

"Stop.  Being.  Miserable!  Give me the number, you bastard!"

"Hey look over there - is that Rocco?  Apply blood!"

It took three different strips before one actually gave me a result.  This has never, ever happened to me before.  Mind you, on Monday night, I wasn't able to get a result from six different strips from this bottle - kept throwing "Error 5" type-messages and absolutely refused to let me in on the result. 

I switched bottles (with 14 strips left), and all I could picture was tossing actual cash into the garbage can.  Those test strips are expensive!

Can a whole bottle go rogue on you? 

February 17, 2009

Larry Bird, At Home.

Larry doesn't let me slack.  Damnit.Brrrrrrrrrriiiiiiing!

"Hello?"

"Keeeeeeer."

"Larry!  dude, how the hell have you been?"

"Dude, don't call me out on being MIA.  You're the one who has been hiding out lately.  Eating kettle corn by the fistful.  Skipping the gym to have dinner with those Fairfield County Dinner ladies ..."

"Hey, wait a second.  I'm not allowed to have a social life?"

"No, you can, but you need to stick with the workouts.  And not just going, but like you need to mentally be there."

"What?  I go!  I'm there!"

"Kerri, you know what I mean.  Over the last two months, you have read seven books while working out.  You can't work out hard when your nose is buried in a book!"

"I'm trying to relax a little bit, too.  Managing stress just as important as exercise!"

"It totally is.  You don't think I got stressed out that January day in '85 against Portland, when I had to hit that baseline jumper at the buzzer?  But you aren't de-stressing.  I've seen you with your Blackberry while you're working out.  Your BLACKBERRY?  That's how you avoid stress?"

"Larry!  How the hell did you see me?"

"Skylights.  I climbed up on the building.  But anyway, you need to tune back into those workouts, Kerri.  You are going through the motions, and that's not going to help you lose those 10 pounds you've gained since the wedding."

"Five pounds, smartass.  And wait, did you say you were peeping through the skylights?"

"Five.  Whatever.  And yeah, the skylights are comfortable.  I usually bring headphones.  But anyway, I want to see some serious effort from you this month.  You were doing really well, and I want to see you back in better shape by the end of March, okay?"

"I can do that.  Actually, we're buying an elliptical this week for the house, so now I can do you at home."  

"That joke never gets old for you, does it."

"Nope."

"Okay, Ker.  Keep it real, and don't let me see you with that frigging Blackberry on the treadmill anymore.  Got it?"

"Got it.  Thanks for checking in, Larry."

"No problem.   Happy belated birthday!"

"Thanks!  Stay off the damn skylights."

Click.

February 13, 2009

Mushy Stuff: Diabetes Edition.

A little love and diabetes never hurt anyone.  :)I love Chris. 

Not that I need to tell you guys - I think it's pretty obvious - but sometimes I lose sight of how much I appreciate him.  I don't tell him how much he means to me as often as I should.  He is a wonderful partner.  There's all the regular relationship stuff- he pumps the gas for my car so I don't have to stand in the cold, he takes out the garbage, he laughs at my stupid jokes, he reads my written messes and helps me make sense of them - but our relationship has an extra, special component that others don't.

He is the significant other of a person with diabetes.  

I don't know what it's like to fill that role.  I am the diabetic, so I only know things from my perspective.  But he makes it look so easy.  A 3 am low blood sugar that has me in tears?  He knows how to quickly give me juice and wipe the sweat from my forehead.  Weeks of working out with no visible results?  He knows what words will soothe me:  "You are healing from the inside out."  Those moments when I feel like I'm crumbling emotionally?   His hugs seem to put my pieces back together again.

And it's not just the serious stuff.  We aren't always talking about complications and fears.  He makes