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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 23, 2010

Someone Else's Childhood.

This post was originally featured on the ACT1 Diabetes support group site, and since I'm spending the day at the doctor's today, I thought it would be a good time to do a little cross-posting.  :)

*   *   *

Oh holy awesomeness.For Valentine’s Day, Chris and I went to a French restaurant to celebrate our marriage and our growing family. (And for those of you who are familiar with my husband’s new-found Francophile tendencies, you’ll realize that he is the one who chose this restaurant. The guy is addicted to crème brulee.)

Since I’m seven months pregnant, we didn’t crack open any bottles of wine during this dinner, but instead decided to indulge on a delicious fruit plate with chocolate fondue, with white chocolate and hazelnut dipping sauces on the side.

“What is this stuff?” I asked, easing my strawberry into the small dish of hazelnut spread.

“It’s Nutella, baby. You’ve never had that before?”

“No. It tastes like hazelnuts and sort of like chocolate. But it’s not chocolate. And it’s seriously awesome. What’s it called again?” I couldn’t stop rambling – this stuff was totally hitting the spot, appeasing my craving for something sweet and decadent.

“Nutella. You’re being serious? You’ve never had this before?”

“Dude, why would my mother ever introduce me to this sort of thing? I’d have stolen jars of it from the store and eaten them in one gulp, had I known.” I smiled ruefully, thinking of the E.L. Fudge cookie binges I went on as a kid, rearranging the remaining cookies in the sleeve to hide the holes where the missing cookies had once been.

“Good point.” He handed me another strawberry. “Bolus away, love.”

I forget how many of those “treats” I haven’t missed during the last twenty-three years. I hadn’t ever stuck a spoon into a jar of Fluff and gobbled up a few bites, and I hadn’t ever had juice “for fun.” (Always “for lows.”) It was strange to picture a childhood where Ring Dings weren’t eaten in secret, or where rice cakes weren’t used as hopeful barter in third grade for a Snicker’s bar in the cafeteria. (For the record, no one ever wanted my rice cakes. They usually ended up shoved back into my book bag and eaten on the bus by this weird kid who also ate mud pies – literally.)

Food is such a tricky, tricky thing for me, and enjoying a sweet treat in public isn’t ever easy. I usually swallow a little bit of guilt with each bite of sweet, but I know that carrying the guilt isn’t fair. So long as I’m respecting my diabetes control when I indulge, there’s no harm in finding out just how delicious Nutella can be.

But when the check arrived, and with it, a wand of freshly spun, light pink cotton candy, I exclaimed excitedly, “Oooh! Cotton candy! I’ve only had that once before!”

Chris’s face broke into a wide smile as I twirled off a small section of the spun sugar and tasted someone else’s childhood.

February 22, 2010

Orange You Glad?

That old knock-knock joke about the oranges and bananas?  My brother and sister and I would bust that one out at one another all the time:

"Knock, knock!"
"Who's there?"
"Banana."
"Banana who?"
"Knock, knock!"
"Who's there?"
"Banana."
"Banana who?"
"Knock, knock!"

(This is where you either ended up with the giggles or started to get annoyed.)

"Who's there?"
"Orange."
"Orange who?"
"Orange you glad I didn't say banana?"

Of course you're glad I didn't say "banana."  Because that joke sucks a little bit.

This is all a big build up for a photo I had taken of my new favorite food:  oranges.  Odd thing is, I usually don't like oranges - something about the smell of the rind and the sticky hands and the fact that there is no really clean way to eat one of these pesky things - ugh.  Was never my snack of choice.  Reminded me of soccer game halftimes, when I'd have to shovel in a few slices of these, or wouldn't be able to have any, depending on my blood sugar at the time. 

Of course, thanks to the magic of pregnancy (which has also given me a taste for seafood and taken away my preference for winter mint gum), oranges are what I'm craving most this week.  Back in the beginning of my pregnancy, I was jonesing for citrus all the time, drinking pulpy orange juice right from the carton.   Second trimester gave me a break from this indulgence, but it's back in full force.  (Sidenote:  And shoving the rind down the garbage disposal and churning it up in there actually makes the disposal smell good, which I thought was an impossible feat.  Double-win for citrus!)

Tomorrow I have a few doctor's appointments at Joslin, including a follow-up eye dilation.  I'm hoping that my eyes are clean this round, because I do not want diabetes issues dictating the arrival method of the baby.  But I'm definitely on board with just "getting her here safely."  Whatever it takes!

(And if you can serve up a goofier knock-knock joke than the old school oranges and bananas one, I'm all ears!)

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 16, 2010

Update on BSparl: Third Trimester Goodies.

We've made it this far:  the seventh month of BSparl's little cookie-baking gestational period.  Seven months and one week, actually.  Third trimester. 

(Holy.  Crap.  She's almost here!!)

Last Friday, Chris and I were at Joslin for the first of many, many third trimester appointments.  Turns out that from here on in, the visits to the doctor become as regular as Siah waking me up by putting her nose in my ear. (Read:  all the time)  Here's the long run-down on what's what with the BSparl (and for those bored by the pregnancy posts - bear with me.  Only about nine more weeks to go!):

Baby Girl Sparling, clocking in at 29 weeks

OB/GYN:  She did a quick scan of the baby to take some measurements, and I was very, very happy to hear that BSparl is right on track with her weight.  One of my concerns, and rightfully so, is having a very big baby, but BSparl clocked in at 2 lbs, 11 oz and falls into the 51st percentile for weight, so she's not exhibiting signs of "big diabetic baby" yet.  

"She's long, measuring in a week ahead.  That's a nice surprise!" Dr. T said, laughing as I scooted my 5'3 3/4" self further up the examining table.  

"She'll be tall.  And lanky.  And slender," I said, hoping BSparl will have her father's metabolism instead of my sluggish fight-for-fit.

We discussed, briefly, the day of BSparl's birth.  Apparently, I'll be disconnected from my insulin pump at the last moment and put on an insulin drip, because that's the route that Joslin takes with its mothers-to-be.  "If you have a scheduled c-section, we'll pull the pump right before we do the epidural.  And if you have natural birth, we'll do the drip before you're in active labor."

"So you guys will be monitoring my diabetes throughout the whole mess?  Will I be able to test and treat myself, as needed?"  I asked.  This was a concern of mine, and Chris's, because we are so used to being able to test my blood sugar whenever I feel "off," and the idea of having to rely on others to keep tabs just didn't sit right in my mind.

"Oh, no worries about that.  You can test, with your meter, as often as you want.  We just want you using the same meter throughout, you know?  That way, things are consistent.  We can use your meter through the whole process, if you'd like.  Totally up to you."

"And there will be a glucose drip, too?  In case of lows?"

"Yes.  That's a good question.  Lots of times, keeping moms higher is part of the trouble.  Active labor is like being at the gym!"

"And a c-section isn't a guaranteed go yet, right?"

"Not yet.  I want to see the results of your eye dilation this month, and if that spot near your left macula has been reduced, we can discuss natural birth.  But if it's still there, I'd like to really keep the c-section options open.  I want your baby out, and I want your eyes safe, all together.  But you don't have any protein in your urine, and your baby's size is completely normal, so the only thing that may dictate a c-section are those eyes."

News to me.  So there's still a chance I can deliver BSparl naturally.  (Don't get me wrong - "naturally" means "with drugs," as far as I'm concerned.  I'm tough, but not nearly that tough!)  I have an eye exam scheduled for the end of February, so that will determine how the baby makes her entrance. 

Endocrinologist:  Dr. B and I ran through my basals (her response to my increased rates throughout the day, "Whoa!  I knew this was going to happen, but I'm glad you made the adjustments.  But whoa - some of these spiked a lot!") and made some adjustments to my insulin-to-carb ratios.  Overall, my numbers are creeping up a little higher all over the place, but this is on-par with how a diabetic pregnancy progresses.  Damn insulin resistance!  I'm up to about 60 units of Humalog a day, which blows my old insulin prescription out of the water.  I actually had to have Dr. B write me a new script so that I would have enough insulin to get me through the end of April. 

(And for those who asked about the 185u insulin cartridge in the Animas Ping, it's the same size, essentially, as the one in my Minimed 522.  Before pregnancy, using about 25u total of insulin per day, that size worked awesome for me.  Now?  I'm refilling the cartridge mid-way through the second day and just switching out the set on the third day.  I'm anticipating that my insulin needs will drop dramatically once baby girl is out and that anti-insulin hormone producing placenta is out, too.)

Basically, this was the nerdiest endo appointment I've had yet.  After giving her the quick rundown on our trip to Sundance (the crew at Joslin is very excited for Chris, which makes me grin), we crunched numbers like two little accountants, minus the cool visors and the green lamp.  But by the end of the appointment, we'd done a little more tweaking, and when I see her again in two weeks, I'll hopefully have steadied out a bit.  They drew an A1C and a CBC, and I'm holding my breath to see if the A1C holds steady or goes up a bit.  (I am expecting an increase because of the overall increase of my numbers, but we'll see.)

Phew!  Long day (long post), but only two appointments.  And starting in March, I'll be there once a week to monitor BSparl and her little world in there.  And then, I'll be there twice a week to keep tabs.  I will eventually rent a room at the Joslin Clinic and live there, until my daughter is born.  Good thing I have a flexible work schedule at the moment.  Otherwise, I have no idea how I'd manage this routine.  

The best part of the day, of course, was just after Dr. T put the ultrasound wand on my belly, and the baby swirled into view.  BSparl head-down, feet up, and very active.  And even though she was shy, once again, in showing us her face, I did see her eyes and her cheek and the crest of her little mouth. 

And I love her.  Every teeny inch of her.

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 14, 2010

Looking Back on Valentine's Day: The Peanut Butter.

I am all mushy this Valentine's Day, because I am very much in love with my weird and wonderful husband, and I can't believe that in just nine short weeks, we'll be meeting our little girl.  Chris has been a supporter of mine in so many ways, both here on the blog and in the diabetes scope of things, but also behind the scenes, in ways that we share together as a family.  It's by no means perfect, but we grow and learn through each tough moment, and that's what makes it feel right.  

So since it's Sunday, and it's Valentine's Day, and since the mush-factor is running rampant around the world today anyway, I wanted to revisit a post I wrote back in 2007.  Back before we lived together, before we were engaged, and before there was ever even the hope of a child.  

Because when it comes right down to it, it's all about the peanut butter.

*   *   *

Before we moved in together, I lived alone in a very cute apartment in South County, RI.  He came over one night after work and we made a trip to the grocery store.  As we unpacked the bags, I told him I had a very strange habit once I developed a crush on someone.  It was silly and childish, yet I was still doing it.

It involved peanut butter.

“If I buy a new jar of peanut butter, I peel back the foil and use the tip of a knife to write in the name of the person I have a crush on.”

He looked at me with an amused grin. 

“You do?  Really?”

I blushed.  “Yes, I do.  I know it’s a weird habit.  But I keep doing it.” 

“Have you ever written my name?”  He poked me gently in the ribs.

“Yes.”  Face on fire now.  Why was I telling him this?  I sounded ridiculous.

We finished putting away the groceries. 

A few nights later, as I was alone in my little apartment, I reached up into the cabinet and grabbed the new jar of peanut butter.  Knife in hand, I unscrewed the lid and prepared to etch his name.  I smiled to myself at the goofiness of it all.  My name in the peanut butter.

I lifted off the lid and the knife clattered to the countertop.  I couldn’t help myself from smiling and my eyes filled with tears.

In the top of my new jar of peanut butter, he had written my name.

He inspired me to start this blog and he supports every bit of this adventure.  He moved away from home with me so I could pursue a career at dLife. (He even helps me check for typos.)  He makes me laugh every day.  And he tolerates my idiot cats.

He is my best friend and I love him dearly.

Happy Valentine’s Day, Chris. 

I still write your name in the peanut butter.

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 11, 2010

Need to Get Juiced.

BEEEEEEEEEP!

Reaching for the alarm, but it's not the clock.  Check the cell phone, but it's not a text message.  Grope for the cat, but she's not beeping, either.

BEEEEEEEEEP!

Oh yeah, how could I forget?

52 mg/dl.  Not too low, but apparently I've over-corrected with those basal changes I made two days ago, and I need to retweak just a little bit. 

Wandered out to the kitchen, leaving the BEEEEEEP!ing behind in the bedroom, and also leaving the tube of glucose tabs resting on the bedside table untouched.  Make a beeline for the bottle of grape juice that sat, unopened, in the fridge.

I put it on the counter and tried to open it.

And you know, those freaking bottles are childproof when you are low in the middle of the night.  I couldn't break the seal on that white Ocean Spray cap for the life of me.

"Oh come on," I muttered as I braced my hip against the counter and flexed my wrist against the bottle top.  Abby circled, in shark-mode, meowing in support (or mocking me for not having the strength to open a freaking bottle of juice, but since she doesn't meow in English, I'm going with "supportive.")

Bottle cap didn't budge.  And despite the fact that the kitchen cupboard has three large jars of glucose tabs (in varying flavors, for my chalky pleasure) and a bottle of honey in it, I still pressed on with this stupid bottle.

BEEEEEEEEEP! from the bedroom.

"Open, you stupid thing!"

And the seal finally started to break, cracking open slowly and releasing like a loose tooth.  I wasn't too low, and I'm constantly wary of the highs while pregnant, so I just took three small sips.  Abby meowed her congratulations, while Siah snickered behind her paw at my clumsy weakness.  What is it about those lows in the wee hours of the morning that make my muscles into mushy oatmeal?

Next time, I'm eating the glucose tabs.  It's less embarrassing.   ;)

February 10, 2010

Guest Post: Sorry.

Today, I have the honor of hosting a guest post from Scott Kasper, photographer extraordinaire and parent to three little boys, two of which have type 1 diabetes. He offered to share a diabetes moment he and his family had over Superbowl weekend, which I'm proud to share here.

*   *   *

Sorry

We are a family of five … a mom, a dad, and three awesome boys aged 12, 10, and 6. We love to do all the stuff that every family loves to do. This weekend was packed with snowball fights, snow men, fire in the fire place, hot chocolate, movies, the Super Bowl, and of course the family board games … fun for all ages!!!
 
Sounds pretty much like a normal, par for the course white picket fence family in suburban New Jersey doing what most normal families do … right? Well, for the most part that may be true. However, there is a big disclaimer that makes my family a bit of a departure from most others. Two of the three boys have type 1 diabetes. That means, for us, the six year-old’s blood sugar crashed half way through the snowball fight, the twelve year-old gets mad when he has to count his carbs as he grazes the treats at the Super Bowl Party, and the ten year-old (who does not have diabetes) complains that he is tired of having to have sugar free hot chocolate!! Oh, and then there is the board game…

This weekend the kids decided that they wanted to play Sorry™. Okay, that’s fun enough, and doesn’t last all afternoon the way monopoly does. Mom was reading a book (if you can still call it a book when all one does is scroll from page to page on the Kindle™), Dad was available, and it’s a game for four players….perfect!! Not exactly. One of the things my kids like to do most is NOT put stuff away when they are done. As it relates to Sorry™, that means that there are no green pieces left.
 
“That’s okay Dad”, pipes up the six year old, who has had type 1 diabetes since the age of 13 months. “I know what we can use!” Off he went toward what we refer to in our home as “The Cabinet,” where we have a veritable pharmacy of diabetes supplies. Within moments he returned with four cone shaped objects, just the right size to substitute as a Sorry™ game piece. It did not strike me at first, but as I got my first turn I quickly realized that the pieces he had provided were, in fact, packaged needles for the insulin injector pen. 

When in doubt, kids with diabetes IMPROVISE!
Photo by Scott Kasper

We are a family of five that is, in large part, defined by type 1 diabetes. I have seen it impact every aspect of our lives. About this, my wife and I are very sorry! We’re sorry that two of our boys have to grow up with the daily complexities of life with diabetes. We’re sorry that my middle son wonders whether he will ever become diabetic. We’re sorry that, perhaps, something we did or something we genetically passed on has caused this to happen…on a daily basis we are sorry!

This weekend, without even missing a beat and without realizing how NOT normal this is, my six year old resorted to using insulin injection supplies to play a board game … not just any board game … a game of Sorry™!

How ironic is that!

*   *   *

Thanks for sharing, Scott!  To check out more of Scott's amazing photography, visit his website (and you can also become a fan on Facebook).  And if you're looking for a classy medical ID, visit the website of Scott's wife, Rachel, at RescueMeIDs!

February 09, 2010

Snapshots from a Tuesday.

I'm catching up from taking yesterday off, so all that's left of my brain at 10 am is something resembling brie cheese.  Here's what's stewing about:

  • Well, of course now I want brie cheese.  Just a few more weeks until I can get my brie on.
  • And THANK YOU for the very kind birthday wishes yesterday!  You guys made my day - thank you!  :D
  • Insulin needs between me and Ms. BSparl are up to an all-time high.  I just rejiggered my basal rates yesterday, and now I'm taking 26u of basal per day and my insulin-to-carb ratio is up to 1:6.  That's a lot of insulin.  I'm burning through about 60 units a day - more than double what I was rocking before.
  • I need to get Dr. B to write me a high prescription to finish out this pregnancy, or I'll be trying to make my own insulin in the bathtub, a la moonshine.
  • Moonshine has a whole Wikipedia entry that fascinated me for about 15 minutes.  People actually make this stuff and drink it?  
  • Pregnancy dreams are starting to freak me out a little bit.  Last night, I dreamt that my old job sent me a survey, asking me to outline exactly how many freckles I had on my body, with a chart at the end of the survey describing how these freckles would affect my ability to advance in the company.  (WTF?)  And two nights ago, I dreamt that I was tasked with saving the American kitten population through breastfeeding.  These dreams are vivid.  And terrifying.  Nursing kittens? 
  • Oh shoot - that's going to bring in some dodgy Google searchers.
  • Blooming some peach blooming tea this morning.  That stuff is lovely, and will hopefully wake my ass up this morning because I am dragging.
  • Could it be from the carb-overload last night at birthday dinner?  Chris took me out to a fondue restaurant last night and we were joined by a few friends - and by bread, cheesecake, brownies, and cinnamon marshmallows.  Not to mention chocolate fondue, among other lovely things.  I may have emptied out an entire pump reservoir last night, but my blood sugars stayed wicked stable, and only peaked up to 174 mg/dl for about 30 minutes.  I'm considering that a win. 
  • Diabetes365 is still rocking on - one month completed, eleven to go - and it's starting to look more like a  pregnancy journal than a diabetes-centric exercise.  But that's what happened last time I did it:  it became a wedding exercise.  Thing is, it's about 365 days of LIFE with diabetes.  The whole "life" part is what makes it about us, not about diabetes.  
  • (That's my excuse, anyway.)
  • Oh, and the Medgadget polls are still open - if you have a chance to vote for Best Patient Blog and you wouldn't mind casting your vote for SUM, that would be OMGWTFBBQ cool.  Click here to vote!
  • This morning, I slept in a bit, but was woken up  by an insistent Sausage, who wanted to lay flat across my belly.  So I let her.  Only once she started purring, BSparl woke up and got into the action.  So my morning started colorfully, with the cat and the baby trying to respectively figure one another out.  My sleep patterns were the only casualty.
  • I'm like the walking dead today.
  • And really - what's up with this instant third trimester exhaustion?  I thought I already did this for the first three months.  Now it happens again?  (Hey pregnancy experts - can I have some caffeine now?  Just a little?  Like one cup?  PLEASE?) 
And now?  Deadlines to meet and projects to finish.  Friday is another appointment at Joslin, and I have to figure out what I need to ask them.  Because the questions are coming fast and furiously these days.  As is the baby.  Only hopefully not furiously.  But definitely FAST.

February 08, 2010

Today, I Won't Puke on the Floor.

A guest post from Ms. Siah Sausage.  Strange little critter.

*   *   *

Siah in a bag.  Where she belongs. 

Today is Kerri's birthday, and she's taking the day off to spend the afternoon with her mom and then go out to celebrate with Chris tonight.

Whatever.

Birthdays.  I don't care about those sorts of things, unless they are my own, in which case I fully expect a carrot cake with cat nip frosting, and my own Snuggie and maybe something I can use to scratch the couch because sometimes it just plain makes my paws tired to spend all that time fixing the couch.  I deserve rewards for those behaviors.  I am, after all, very tolerant of Kerri and her affinity for picking me up all the time and snuggling me to her face.  She still has a face.  See how tolerant I am?

So it's her birthday, and the other cats and I have decided to give her our respective gifts:  

Abby has decided not to shed on the couch today.  This is a big deal because Abby is almost topping out at 18 pounds of fluffiness, so having her refrain from shedding means that Kerri doesn't have to vacuum today.  This is also a big deal.  Kerri hates vacuuming, but when Abby's fur becomes a tumbleweed that rolls across the living room floor, she starts swearing and promising to send us all to Belgium (which I would be fine with because I hear they have nice chocolate and I like chocolate and also Teddy Grahams - they are good), and then she brings out that huge vacuum cleaner that is so LOUD and sends us all scurrying for safety.  So Abby won't shed. 

Happy birthday, Kerri, from Abby.

Prussia promises not to sleep on her sweaters.  Kerri will be very pleased, because Prussia likes to get into bags of sweaters that have just been returned from that dry cleaning place, and then she sleeps on them.  Which, again, makes Kerri swear.  Creatively.   So no Prussia Cat nestled in the pockets of clean sweaters. 

Happy Birthday, Kerri, from Prussia.

And from me.  Her favorite, even though she claims to like me the least.  Today, in honor of Kerri's birthday, I have made a solemn promise to refrain from doing what she hates the most - I won't scurry over to the food bowls and devour as much as I can in one breath, and then go hide under the dining room table and heave my guts out in several different locations.  I won't make her crawl on her hands and knees under the table with that can of rug cleaner and a wet towel, mumbling as she mops up my offerings.  

Today, I won't puke on the floor.

Happy birthday, Kerri, from your favorite Sausage Cat. 

You're welcome.

*   *   *

Thanks, Siah.  For making me feel so ... like this.

February 05, 2010

Oprah Does Diabetes.

The Open Letter Mailbag.  Also looks like a sack of potatoes.  BUT LOW CARB ONES!  :pDear Oprah and Dr. Oz,

Diabetes is very expensive to manage and to treat the complications of, but what comes at an even higher cost is the damage of statements from a doctor, claiming that diabetes is reversible. I was diagnosed as a child, and my type 1 diabetes is not the result of any controllable factors. However, I have many friends who have type 2 diabetes who can make the same claim.

I can't lie - I had a lot of hope about your episode regarding diabetes.  Even though it was billed as "the silent killer" and even though I knew you'd show the darkest side of diabetes-related complications possible to "sensationalize" this disease, I was holding out because I wanted this episode to be accurate. 

Dr. Oz, you are a doctor, and a mouthpiece for the medical community.  I realize you are a cardiologist, not an endocrinologist, so you can't be expected to know everything about every medical condition, but I'm surprised you were chosen as the expert on diabetes.  I understand that doctors are human, as are their patients, and no one expects you to be an expert on every medical condition.  I actually respect doctors who admit that they can do a lot, but can't do everything.  And since you aren't an endocrinologist, I'm not shocked at your casual mentions of the two types of diabetes, not making clear distinctions between the two.  (Actually, I believe it was Oprah (or her husband, Richie Cunningham) who continued to bring up the "type 1 or type 2" question.) 

I was hoping that you take a clinical approach, instead of one that generalizes diabetes. Type 1 diabetes is a very serious disease and shouldn't be put in that "lose weight and you'll save the healthcare system millions" category. You had an opportunity, and a duty, to educate the public about the different kinds of diabetes, and to help people understand what methods of treatment work best.

I was disheartened to see how this show was handled, editorially.  You two started off by saying that diabetes is an epidemic, one that will eventually bankrupt our healthcare system.  After discussing how insulin and glucose work in the body, you then cut to Laureen.  Laureen is 44 years old, on dialysis waiting for her second kidney transplant, and a double amputee.  You zoom in closely on her tears as they fall, as she laments how she has been dealing with diabetes for most of her life and wishes that she took better care of herself when she was young.  

(Back to the studio:  Oprah asks if Laureen was a type 1 or a type 2 diabetic.  Dr. Oz says she was type 1 diabetic.  "She's type 1.  She's not making enough insulin.  Type 1 is genetic."  I'll admit this is one of the first times I've ever heard type 1 and type 2 even mentioned in the same breath in mainstream television.  And then in the next breath:  "Diabetes is an epidemic.")

Why show a type 1 diabetic with serious complications, and then say that diabetes is the fastest growing disease in the country?  You need to specify that diet and exercise, or lack thereof, did not cause Laureen's type 1 diabetes.  Yet you want people to see the horrible effects of type 1 diabetes on her body and then say that a generalized "diabetes" is an epidemic.  Type 1 is not an epidemic.  Type 2 diabetes is.  And thanks to your mishandling of the facts, ignorance now joins the epidemic status as well.

Do you realize how frustrating it can be to live with diabetes, of any kind?  The testing, the injections, the complications, the daily fear of what may happen while you're driving or - worse - what may happen while you sleep?  The physical impact of diabetes is tremendous, as you both illustrated with your jar of glass shards, representing what an excess of sugar in the blood stream can do to blood vessels.

But do you realize how equally frustrating the stigma of diabetes is?  How we are so often viewed as having "brought this on ourselves" or as not working hard enough to prevent complications?  I've written in my blog countless times about the impact of diabetes and guilt, but you wouldn't understand that. You understand ratings.  You understand getting your name out there and having people click on your website ads and tune into your show.  You understand that showing a woman with missing limbs and streaming tears will make people sit on their couches and watch your show.  What you don't understand is how some of us felt, watching from our homes.  Opinions vary on how your show handled diabetes, but for me, personally, I feel like you just blended the worst of both kinds and then barreled into generic advice about generic diabetes symptoms and "remedies." 

Now please don't get me wrong:  I'm grateful for having more of a spotlight on diabetes.  For all the times I've wanted to see diabetes featured on the Oprah show, I feel somewhat guilty for criticizing how your portrayed the disease.  But it's hard for me to disconnect logic (i.e. not everyone has type 1 diabetes so not everyone will understand what information is correct or incorrect about diabetes) from my body's visceral response.  I know that during many points in your show, I felt so frustrated.  I wanted clarity to be delivered to the parts of society that are  unfamiliar with diabetes.  I wanted to have people watch your show and come away thinking, "Wow.  There's more than one type of diabetes?  It's not all about diet and exercise, but there are people who don't have a choice in this diagnosis?"  Instead, I'm afraid that people will continue to think that diabetes is just diabetes, and that there is no distinction between the causes or the treatments.  They'll think that all diabetes is controllable and treatable and potentially reversible.  That it just requires work, and for the diabetic to not be lazy about taking care of themselves. 

If one dollar of funding towards type 1 diabetes research is put back into a potential donor's pocket because they believe, as a result of your words, that all types of diabetes are the same and that all diabetics simply didn't take the measures to "prevent" their disease, this is your burden.

And for those of us with diabetes, we will have to carry the burden that society doesn't deem us "worth curing" because they think we did this to ourselves.

Sincerely,
Kerri Sparling
Type 1 diabetes for 23 years … and counting

NOTE:  To send your comments to Oprah, click this link.

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.

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