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March 29, 2012

Looking Back: Disco.

What's that you say?  Disco boobs?  Yup.  Looking back at this post from January 2011, but still rocking the pump-in-the-bra look.

*   *   *

Over the holidays, my husband and I had the opportunity to join his agent (who happened to be in town) for dinner.  Grown-up time, sans BSparl.  (I wore tights.  It was a fancier than our average Tuesday night.)

So we all sat down to dinner and while everyone was talking, I reached into my purse to do a quick blood sugar check and to remote bolus for the bread and olive oil that had been placed on the table.  My hands stirred up the contents of my purse, but didn't score the meter.  

"Damn, I know exactly where it is," I mumbled to myself, picturing my meter case on the front seat of our car, which was down the street and tucked into a parking lot.  

Conveniently, I had this scrappy little One Touch Mini rolling around in my purse, so I was able to test, but I was out of luck in the remote bolusing department.  And with my pump tucked discreetly, but snuggly, into the front of my bra (clip against my sternum, buttons on the pump facing out), it wasn't exactly the most readily available medical device.  Not without some seriously awkward self-groping, that is.

Chris was watching me scramble.  "Just pull your napkin up and grab your pump.  No one will notice," he whispered.

"You don't think I should excuse myself to the ladies' room?"

"Nah, go for it."

So while everyone was talking, I reached down the front of my dress and deftly grabbed my insulin pump.  I programmed in the bolus and then went to tuck it back into my outfit without anyone noticing.

Except.

Once you've begun a bolus on the Animas pump, if you press a button while that bolus is administering, it prompts the pump to cancel the bolus.  It's a great safety feature for when you realize, mid-bolus, that you absolutely do NOT want to take five units of Humalog to cover a spinach salad.  But it's not so awesome when you accidentally hit a button while securing the pump to the front of your bra, and it suddenly starts singing a loud song.  And lighting up, providing a strange glow from your chest, not unlike a medicinal disco ball.

"What's that?"  One of our dinner companions asked, looking in my direction but not knowing the noise was coming from my body.

"Sounds like a cell phone!" One of the other dinner guests said, smiling and reaching for another piece of bread.

During the brief distraction, I snagged the pump again and programmed the bolus a second time, then stuck the pump back where it came from without issue.   Disco boobs.  There.  I said it.

"Oh, it's me.  No big deal - all set now.  So as we were saying ..."  I felt the bolus going in, and the pump was quiet again.  No need for me to get into a big explanation of "Oh, this is my INSULIN PUMP and I'm DIABETIC and YES I CAN EAT THE BREAD."  It wasn't what I wanted to talk about that night.  I just wanted to move on, and swiftly.

No one asked any questions, and the night went on to be a very nice one, with excellent food and great company.

And Chris and I definitely laughed our faces off when we got in the car to go home. 

"So do you think your agent and his family think I have some kind of musical ... disco boobs?"

March 28, 2012

SXSWi: Friending Pharma.

I was in Austin, TX two weeks ago for the SXSW conference (my first time ever at SXSW, and it was awesome, despite the fact that film and music started the day I left - planning fail on my part), and I had the true honor of speaking on a panel about "Friending Pharma."

The panel was inspired by an interaction between patient advocate Marilyn Mann (advocating on behalf of her daughter, who lives with heterozygous familial hypercholesterolemia) and a PR representative for a pharmaceutical company who engaged in an exchange deemed "creepy" by Marilyn. 

According to an article in Forbes, Marilyn stated, "I think it was creepy for this PR woman to join the Facebook page, lurking there and observing on behalf of her drug company client. The idea of having a drug company planting human interest stories in the press is yucky….a big corporation pulling string behind the scenes. I’m not interested in being used in that way."

Brian Reid, of WCG, was struck by this sentiment of "creepy," submitted a panel to the SXSW panel picker about exploring how, if, and why patients want to interact with Pharma, and taking a look at the "creepy" factor. Which is what brought me, Alicia Staley, Allison Blass, and Michele Polz to the table to talk on that Sunday morning.


"Friending Pharma" panelists: 
Brian Reid, Michele Polz, Allison Blass, Kerri Sparling (me), and Alicia Staley

Despite the fact that it was at 9:30 on a Sunday morning (after the painful "spring ahead" time change), the room was charged with energy and plenty of discussion. Brian has a wonderful recap of the discussion on his Storify, and Allison wrote about her experiences at Diabetes Mine, so I won't roll through all of the already-captured discussion points. 

But there was one moment that I wish was addressed, or at least expanded upon.  And that was when Gigi Peterkin, VP of Digital Health at Edelman, asked the following question:

"How can we move the conversation forward? We get stuck talking about platforms, off-label conversations and AEs. There are processes for dealing with those. As Peter Pitts says 'Pharma guide thyself' with common sense.

I'd like to ask you guys how we move forward. How do we bring the pharma and patient communities together? We have huge events - ePharma, which is attended by a handful of epatients, and ePat Con attended by a smattering of pharma folks. How do we bring you together to figure out how to advance this conversation?"

I think this question is so important, because we've had a lot of stakeholders in the room before (patients, doctors, nurses, Pharma, etc), and the discussions are excellent, but then WHAT HAPPENS?  In the last year or two, I've been part of a lot of panels and discussions, but I'm excited to see the action that comes of these discussions.  Are Pharma companies leaping into the social media space and feeling like they are adding value?  Do patients/consumers/(whatever your preferred term is - "people?") feel like they're being spied on?  Do they care?  Do they want those conversations happening?  Are doctors and nurses (and other health care professionals) reluctant to engage with patients or Pharma? 

In the diabetes community, from my perspective, there has been a lot of progress. Pharma companies, like Roche, are actually making efforts to get to know leaders in the diabetes advocacy space, and not just in a cursory, "I've seen your URL" kind of way. It's not about the companies getting to know the advocates; it's about people getting to know people, and then working together towards a common goal of better health.

The root of Gigi's question keeps running through my mental audio:  "How do we advance this conversation?"  How do we move these discussions from these conferences and meetings and actually start bridging the gaps between the silos?  (Whoa - way too many metaphors there.)  How do we get patients and companies and healthcare professionals and all the other stakeholders actually talking TO one another and engaging in this space in a meaningful way?

Basically, how do we stop being creepy and just start talking?  And once we're talking, how do we then take action?  Real action?  Can all of this social media be used for social good? 

I believe that it can, and I think these discussions are the first steps towards helping more patients become engaged, empowered, and healthier. But there needs to be action, and I think we're finally ready for more of that.

[Disclosure: Animas paid for my travel, lodging, and an honorarium for SXSWi. Per usual, they didn't ask me to talk about them during the speech or blog about them.  Full Animas agreement is outlined here. Any questions?  Email me.]

March 27, 2012

Turning Down the Basal.

The Dexcom BEEEEEP!s and I swipe it off the bedside table, clicking the button to see what's up. 

62 mg/dL and an arrow pointing to the right.

(Or to see what's down.)

Morning lows can throw off my diabetes control for an entire day.  I have such a tendency to over-treat low blood sugars that it ends up thwarting my attempts at keeping things tightl.  One mild low blood sugar in the 60's can be over-treated (sometimes simply with one rogue, impulsive spoonful of Nutella chasing down the carefully calculated glucose tabs) way up into the 300's, effing up the entire day. This does not bode well for my attempts at lowering my A1C without letting that number become the average of lows and highs. 

So sometimes I dial down my basal rate when I'm experiencing mild morning lows.

This is not always the smartest move.  Low blood sugars in the morning are risky at times, the ones I drift in and out of sleep during, sometimes turning a 70 mg/dL into a tough 40 mg/dL. But armed with info from the Dexcom, I have the gist of where my blood sugars are going.  Am I low and dropping wicked fast, or have I been low for a while?  If that's the case, I'm reaching for the bottle of juice on the bedside table.  But if I'm lowish and holding steady, I'll turn my basal down to -70% for an hour and keep an eye on my blood sugar, hoping it goes up a bit in response.

It's hard to photograph the screen correctly when it's early in the morning.
My Animas Ping, changing up the basal rates

Almost 100% of the time, this dial-down works, so long as I'm not dropping fast. My basal rate for the majority of the day is 0.45u, but from 5 am - 9 am, it doubles up to 0.90u per hour.  Dialing it down when I'm holding at 60 or 70 seems to be just enough to bring me back into range without running the risk of over-treating and ending up in the 200's. 

Tweak ... tweak ... 

Could be the sound of the birds finally arriving for spring, or is it the sound of me making small, hopefully useful, adjustments to my diabetes management?  (Actually, I'll take both.)

March 26, 2012

Little Men Who Live in Omnipods.

There's a little Metal Pod Man who lives inside of every Omnipod pump, who dances when you bolus.  

No … seriously.

Over the weekend, I was introduced to the fabulous Metal Pod Man through my Facebook friend, Robert Coombs.  Robert messaged me after seeing last week's post about recycling the carnage of diabetes devices:

"Regarding your recent post about re-purposing diabetes equipment, I thought you'd find one of my discoveries interesting. Did you know that there's a little man inside the OmniPod that dances from side to side while he delivers your insulin? There's a much longer story to this that makes me sound like less of a conspiracy theorist, but here's a photo of the 'pivotal drive engaging member.'"

I had no idea.

Thankfully, he included a photo:

They're almost cute.

And my smile couldn't be contained.  A little, Metal Pod Man?  Inside of each Omnipod?  I emailed Robert immediately and asked if I could share his photos on SUM (a request he thankfully granted, because seriously - this teeny, metal bathroom logo guy cracked me up so much that I couldn't wait to post about it.)  

Metal Pod Man is actually an integral member of the Omnipod mechanics.  According to Robert's notes: "It seems, in fact, that one of the innovative safety mechanisms that prevents a dangerous massive bolus and controls precision insulin delivery is also a very cute design artifact. I'm referring of course to the Pivotal Drive Engaging Member (PDEM), also known as the little man that dances when I get insulin."

He lives here:
Little man who lives in your Omnipod doesn't exactly believe in "open floorplan."

And he's in every pump, dancing while you bolus.  Robert described it to me like this:  "There's actually a very thin wire that runs into one side of his (I'm being a little presumptuous here since it's shaped like the men's room icon) head and out the other. He pivots around a pin that goes through his belly. The wire heats (expands) and cools (contracts) and this makes him dance, or rather, waddle. Each of his arms is in contact with a little wheel that spins one 'click' each time he pivots. That's why you hear the clicking when you bolus. This is actually part of a rather elegant safety mechanism that prevents the device from giving you a deadly bolus if the power control freaks out and gets pegged open."

So there you have it.  The little Metal Pod Man.  Hey Omnipod - how come this little guy isn't your official mascot or something?  He's amazing!

Thank you, Robert, for making me want to crack open every mechanical device in my house to see what kind of gnomes might be living inside.

March 23, 2012

Spaceships and Squirt Guns.

Every time I do an infusion set swap, I noticed how much the Inset looks like a spaceship.

I mean, it's kind of like a spaceship, in that when it's not working properly, my blood sugar goes into orbit?  #toomuchofastretch?

I mean, it's kind of like a spaceship, in that when it's not working properly, my blood sugar goes into orbit?  (Too much of a stretch?)

When I was a kid and using multiple daily injections of insulin instead of a pump, I ripped through several syringes a day.  My mom would clip the tips of the needles off using this orange nail-clipper looking thing from BD, and then they'd be tossed into a sharps container.

But sometimes my brother and sister and I would take the needle-free syringes, fill them with water, and use them as squirt guns.  They were like little druggy water pistols, and to a trio of kids, it was fun.  (Not to mention how my cats went berserk whenever they'd get their paws on a syringe plunger cap. Hours of feline, crazy-pawed fun!)

Sure, diabetes paraphernalia can be all medical and scary and a reminder of what this disease requires of us on a daily basis.  But it can also remind you of wicked cool spaceships.  Or double as cat toys.  And it can provide some makeshift squirt guns, too.

Not too shabby.

March 22, 2012

What I'm Reading: Diabetes Linky Bits.

The diabetes online community has expanded to such an extent that I have no clue what kind of blogs are out there, never mind reading and keeping up with all of them.  But there are a few blogs and communities that I'm feeling very partial to lately, so I wanted to share them here.  Today.  Right ... NOW!

Blah, Blah Brooklyn
I've always loved Karen's blog, but when she announced that she was pregnant and then chronicled her journey with diabetes and pregnancy, I was hooked.  (That, and her kid is ridiculously adorable.)  Now, post-baby, she's dealing with a diabetes burnout (so to speak) that I'm all too familiar with, and reading her blog is like seeing my own thoughts written out by someone else. 

Diabetes Stinks
The title is pretty direct, no?  ;) There aren't a lot of blogs written by younger teens with diabetes, but I have been following this one by Liv, who is 13 years old and writing about the good, the bad, and all the stuff in between.  The DOC has so many different demographics represented, and I'm so glad to see someone like Liv writing regularly.

Bigfoot Child Have Diabetes
This is one of my favorite blogs that I've found in the last few months (and the fact that it's written by a fellow Rhode Islander makes it even better).  "Bigfoot's" son was diagnosed about a year ago, and she writes in a way that makes me tear up through my laughter.  Her blog is a very real glimpse into life as the parent of a kid newly diagnosed with diabetes, and I am learning so much from her perspective.

Type 1 Diabetes Memes
A little levity goes a looooong way when it comes to diabetes management (for me, anyway), and whenever I find something that cracks me up, I want to share it. The memes on the Type 1 Diabetes Memes Facebook community hit that "HA!" nerve for me.  Sometimes it feels good to just laugh at this mess, you know?

That's what I've been reading lately - what's new in your DOC feed?

March 21, 2012

Looking Back: The Sounds of Diabetes.

After a discussion on Facebook last night about old school glucose meters (and the lancing/torture devices that went along with them), I was reminded of this post from December 2007 about the sounds of diabetes.  And since today is Chris's birthday (Happy birthday, Chris!  Or, as your daughter says, "Happy happy day!"), I thought it would be a good day to spend away from the Internet.  

*   *   *

I was reading through the November issue of Men's Health at the gym a few weeks ago and came Sounds from my childhood with diabetes.across an article written by Jeremy Katz, the father of a child recently diagnosed with diabetes.  There were parts of this article that really resonated with me, but this sentence caught in my throat.

"The clink of the insulin bottles against my wedding ring was hauntingly familiar: I'd heard my father make the same sound a hundred times."  - Jeremy Katz

I immediately thought back to my own childhood, with the sound of the bottle of NPH as she rolled it against her wedding rings.  Every morning, she would wake up at 5 am to get ready for work, stopping by my bedroom to test my blood sugar.  Even though I was still asleep, the sound of her approaching slippers made my finger automatically stick out from underneath the mountain of blankets.  She would then roll the NPH to mix it up in preparation for my morning injection.

Clink ... clack ... clink ... clack.  

The glass bottle rolling against her rings in the early hours of my school days.  The stale and hollow beep of my old Accu-Chek meter after it had counted for 120 seconds in efforts to offer up a result.  The scratchy sounds of the cellophane wrapper on my Nabs crackers, or the shunk of the straw easing into my Capri Sun.  The hot fizzing of the urinalysis tablets as they cackled from their glass test tubes on the bathroom counter. 

These are the sounds of my childhood with diabetes.

Now, after 21 years and easing ever-faster into a new phase of my own life, there are new sounds that define my diabetes life.  The boop beep boop of my insulin pump as it boluses for lunch.  The whirring of the pump as it primes itself.  The quick thwap of the lancing device as I prick my fingertip.  The chalky scrape of glucose tabs rustling against one another in the jar.  The gentle click of the beads on my medic alert bracelet. 

These sounds have replaced those of my childhood.  I wonder what twenty years from now will bring.

Even though I now use Humalog insulin that doesn't need to be mixed, I'll roll the bottle against my rings and make myself feel like a child again.

*   *   *

March 20, 2012

Follows Me Everywhere.

Diabetes isn't an obvious player in my daily life, and for a lot of the day, I don't freak out about it.  I wear the pump, the CGM, I test, I watch my food intake, I exercise, and I do my thing as best I can. Blah, blah, blah.

But in the last few weeks, I've been really bent on diabetes management stuff, trying to work out bad habits, work in better ones, and just keeping an overall focus on bringing down my A1C without hitting the 30's and 40's. I've broken the habit of avoiding my meter, I'm responding to the Dexcom alarms, and I've now kept a steady, updated logbook for over a month. (The logbook thing blows my mind - I haven't kept decent blood sugar records since trying to get pregnant.  Kevin is awesome, and he excels at Excel.)  My only minor set-back this month has been the trip to SXSW, where I intentionally ran a bit higher to combat lows that might be triggered by travel, time change, and stress.

I feel like I'm sticking with the program, so to speak, and I hope the results on my meter and in my A1C reflect these efforts soon.  If not now, then I know they will soon.  Chris and I talked extensively about the work/life/family balance, and things are evening out to the point where I sort of want to sneak off and buy an at-home A1C test to see if I can see any progress already. 

But as I'm changing these habits and making better ones, it does sort of feel like diabetes is following me everywhere, like that weird painting of George Washington where the eyes are always looking at you, no matter where you're standing in the room.  Or much like the paintings I saw in the bathroom at a BBQ place in Austin, where these creepy little dogs were staring at you. (I've never washed my hands so quickly in my whole life.)

Someone on Twitter said this is a paint-by-number. Oh I hope so, because I'd love one for my bathroom, so I can be creeped out forever.

After such a long stint of diabetes burnout, I know the feeling of being 'watched' by diabetes will wear off as I adjust to these better lifestyle habits, but for now, it's a little ... creepy.  (Yes, this whole post was an excuse to share this photo of two terrifyingly odd pups.  I'm going to throw in a judgmental giraffe, also from an Austin bathroom wall, to complete the set.) 

I can't escape the watchful eye of diabetes ... or of those frigging doe-eyed doggies.  ;)

March 19, 2012

Diabetes, Love, and Puppets.

The title is self-explanatory.  :)

Love is all you need. Okay, love and insulin.

March 16, 2012

Twenty-Three.

Birdzone,

Next month, you'll be turning two, but I'm engaging in some really thorough denial at the moment, so let's just focus on the fact that you're twenty-three months.

You're doing things that other parents smile and say, "Oh, that's great; I remember when my kid did that," and I want to grab their hand and say, "Yeah, but was it this AMAZING?!" I'm in that kind of smitten phase with you, where you pour out a bowl of oatmeal on your highchair tray table and the mess is incredible but instead of wanting to launch you to the moon, I'm all, "Awwww." I know this response of mine will pass, so I'm embracing it for now.

It seems like you're giving some thought to your future.  You have a high interest in all things musical, from pulling the pots and pans out of the cupboard and "Mama, drums?" for twenty minutes at a time to dancing spontaneously in any setting (store, restaurant, bathroom, carseat, crib). And your musical preferences range from knowing all the "words" to Grouplove's Colours (which you call "the man, man" song) to the Yeah Yeah Yeah's Maps (where you blurt out all the "WAIT!"s).  Anything by the Beastie Boys and Jay-Z still makes you boogie, but you're expanding to Leonard Cohen and Gomez, which makes your mama so, so happy.

Drumming along to the Man, Man song.

If music doesn't end up being your thing, there's a screamingly analytical portion of your little self that continues to impress me.  You arrange puzzle pieces by color, and you like to group crayons into groups by hue. LEGOs are stacked with precision, and when you play with blocks, you can build towers that are seven or eight blocks high with a steady hand. (Kid, that impresses me because I can't put eyeliner on without going rogue; well done!!) You like numbers a lot (how?) and you can count to twenty with a few small journeys (where "five" is often replaced by "couch" and "thirteen" sounds exactly like "Christina").

Researching.

Or maybe you'll be an artist.  You love to color.  And paint.  And cover ever surface of our home with stickers.  (You even covered your dad, almost head-to-toe, with smiley face stickers.  He looked like a Monet.) The outfits you construct for yourself amaze me with their varying patterns and insane color schemes.  When you're outside, you arrange sticks and leaves into little patterns and then you grab my hand to pull me closer to "Show my Mama!"  You love to get your hands dirty and play hard, messily, and then strategically come in for a hug when I'm wearing a white shirt.  ;)

Artist Bird

Next month, you'll turn two, and I'll be encouraged to stop counting your age in months. You are getting so big and so smart and so ... so like a "real kid" instead of "my little baby." I love who you are becoming, and how fast you're growing. You are my whole world.

Secretly, in my head, I'll keep that monthly tally. It doesn't matter if you're 23 months or 230 months; you'll always be my little girl.

Love,
Mommy

March 15, 2012

"Man, You Just Don't KNOW."

This is an exact replica of the plane I flew on.  Yes.After an unexpected overnight in the airport in Baltimore, the passengers of Southwest flight #627 were finally queued up for their flight home.  I was sitting in the seats closest to the windows by gate A5, drinking some water and bleary-eyed with exhaustion.

The guy next to me was wearing sunglasses and a hat, clearly exhausted by the evening's chaos.

"Did you get your new boarding pass yet?" he asked me, nodding to the line of people at the customer service desk, waiting to be reissued boarding passes for the new flight.

"I did. I went out and back through security, because I figured it would be quicker." I gestured towards the staggeringly long line.  "I think I did the right thing."

"Security isn't fun, though. All that unpacking and repacking and the shoes and the bitching and moaning ... everyone's always unhappy, and no one can get through without a hassle. I once had a piece of gum in my pocket, and the scanner picked it up.  Something about the aluminum in the wrapper.  Such a pain."

"I hear you. I wear a medical device, and it's a little bit of a security funfest at times."

He took a knowing sip of his coffee as he looked at my hip.  "Insulin pump?"

"Yeah, how did you know?"

"You're young, you look healthy, but you mentioned a medical device.  I figured it was an insulin pump."  He proudly tapped his shoulder. "Diabetic for seventeen years. Only I do shots. My doctor keeps talking to me about the pump, but I'm not there yet.  I work outside, and in construction, and I think it would be in the way."

"I did shots for seventeen years before switching to a pump. I don't know; I like mine. It took some time adjusting to physically wearing something, but for me, things are just easier when I have it handy. I can sleep in, or skip meals ... gives me a lot of flexibility."

"So you like it?"

"As much as you can like a robotic pancreas, yeah."  

He smiled.  "Doesn't hold you back or anything?"

"I don't think so. I've worn it camping. And hiking. And in swim-up bars on vacation. And on my wedding day. And while I was pregnant with my daughter."  I laughed.  "And now I've worn it for an impromptu no-sleep-sleepover in an airport. Adventures!"

"I have some bad lows.  Man, you just don't KNOW how bad a low feels until it's right on top of you. I've had some at work that have made things really tough, until I can get my hands on some candy.  I try to explain it to my coworkers but they just don't know."  His voice broke on the word "know."

I smiled gently. "Well, I know, if it helps.  That's part of why I went on the pump, because I was having some really insane lows in the early morning hours.  It was really ugly, and dangerous."

"Maybe I'll check it out for real at my next appointment. I see my doc next month. I'll tell her that a random girl at the airport convinced me to get an insulin pump."

"Or you could blame sleep deprivation."

We talked about the Dexcom (he wore a blinded one for a week, on the recommendation of his endocrinologist; I said that I rarely, rarely take mine off), about watching our kids for signs type 1 (compared notes on testing their blood sugar at random), and the effects of travel on diabetes (sustained chaos for both of us).

The flight attendants called us to line up to board the flight, and as we were gathering our belongings together, he touched my shoulder. 

"It was nice talking to you.  I don't get a chance to talk with other people who have this thing, too, but it's nice to."

"Same here, man.  Enjoy the rest of your trip!"

It's so odd, how you can chat with a complete stranger about medical concerns and intimate diabetes moments and never even KNOW one another's names.

March 14, 2012

Bullet the Blue Skies.

SXSW was awesome, and I wanted to write a recap of the Friending Pharma panel, but I also wanted to sleep in my bed last night.  Neither of those things happened, because instead I spent the night at the Baltimore International Airport.  Bullets?  Ya, sure.
  • I left Austin around 5 pm (central) on Tuesday evening, after spending the better part of a week at the conference.  The flight from Austin to Chicago was business as usual, and after a brief layover at MDW, we were en route to Providence.  That's when things became slightly unusual.
  • When they say, "We'll be landing in Providence in the next fifteen minutes," and then you feel the engines kick in and the nose of the plane is pointing … upwards? Instead of downwards? You are most likely not landing.
  • Having the captain come over the loudspeaker and start with, "Well … we've got some bad news," while you're 30,000 feet in the air, is not the most reassuring moment. (Sorry to the guy next to me, who I inadvertently hugged.)  Which is why hearing "We can't land due to the fog in Rhode Island, so we're diverting to Washington, DC" sounds a little better, after the shock of "bad news" wears off.  
  • Being rerouted to Maryland, when you're thisclose to Rhode Island, is frustrating.
  • Deplaning and standing at the ticket counter just outside of the gate for thirty minutes, waiting for information and feeling the crowd working itself into a frenzy, is frustrating.  
  • Hearing "You are all booked on the first flight out to Providence at 6:15 am, and everyone who wants a hotel room tonight can have one," is excellent news. Hearing that news at 1:30 in the morning, and knowing you have to be back at the airport at 4:15 am, is confusing.
  • It's at that point when you start to become a little blase about sleep.  "Eh. I don't need sleep.  I stayed up for like 37 hours in Dubai.  I can pull a 24 hour stint.  I'll play at the airport for the next few hours, no problem. I'm a wild animal."
  • But then you realize that nothing is open in the airport - no coffee, no book store, and the bathrooms are being cleaned.  You can't get your luggage, and So you are kind of stuck in the terminal and actively channeling Tom Hanks.
  • You get frustrated when a lady from the back of the line comes up, all huffy and angry, and wants to jam her finger in the face of the flight attendants, blaming them for the fog that diverted our journey and telling them how tired she is and how angry she is. It's understandable that she's angry, but yelling at the flight attendants makes her look and sound like a jerkface. And also, she cut you in line.  
  • So you quietly tell her just that, and she retreats.
  • And a man comes up and, in one fluid motion, sticks a yellow smiley face sticker on your shoulder"You told her off very respectfully, young lady. Thank you for making her behave." He smiled gently and patted me on the shoulder. "Because I thought I was going to have to cut her."
  • It's hard to recover from that kind of laughing fit, especially at two in the morning.
  • You realize you have eight glucose tabs left (SXSW requires lots of tabs), and you don't have any other substantive snacks in your carry-on.  So you ask the flight attendant if it's possible to grab a can of juice from their plane stash, just to have on hand.
  • And you're impressed when the flight attendant goes busting into one of the plane and comes back with cans of soda, water, crackers in their little crinkly bags, more peanuts than you can shake a stick at (and who shakes a stick at peanuts?), and promises that there are doughnuts on their way from the local Dunkin Donut's shop.
  • It's fun to watch very old people high-five at the promise of doughnuts.  
  • It's also fun to watch them bicker over why the blankets offered by the flight attendants are all scratchy.  "These smell like peanuts," one ancient man said, and his wife nodded vehemently in agreement.  
  • And it's amazing to see people, one moment fast asleep and curled up on their faux-leather airport chairs, spring to life at the quiet arrival of six dozens of doughnuts, then move like zombies towards the boxes.
  • (It's also slightly awkward to have just been talking to someone about diabetes, but then grab a doughnut with your hungry little paws because you haven't eaten since the cheeseburger at the airport in Austin.  Desperate times.)
  • A diet of airplane peanuts, doughnuts, pretzels, and the rogue, squashed banana you found in your carry-on will not do wonderful things for your blood sugar control.
  • Being home, after six days away and a full 24 hours without any sleep or proper teeth-brushing, is so, so nice.
Now it is definitely time for a snooze.

March 12, 2012

Looking Back: Lunchtime Lows.

I've been at the SXSW Interactive conference for the last few days, and between time zone changes and daylight savings time changes, I'm looking back at an old post from April of 2008 while I adjust to the ch-ch-changes.

*   *   *

I'm standing at the counter at the bank and I hear my cell phone buzzing.  Then I hear the Dexcom wailing out its BEEEEEEEP.  My pump starts to buzz from inside my bra (wearing a dress today).  Every bit of technology I have is exploding all at once and I'm just trying to make a damn deposit.

"Miss, I just need your account number."

"Account number, sure.  I can get that for you."  BEEEEEEEEP again.  Why is it beeping again?  It should only beep once when I'm high.  My goodness, I'm awfully warm, despite standing underneath the bank air conditioning unit.

I stick my hand into my bag and forage about.  My fingertips feel like they're trapped in cotton balls and I can't quite get a good handle on my wallet.  Instead, I grab the Dex, which is BEEEEEPing again, and press a button.

Oh shit, LOW.  Below 40 mg/dl.  I press the down button and see "39 mg/dl" next to the blood sugar graph, which now looks like the Cliffs of Insanity from The Princess Bride.

"Here is my license.  Can you pull my account numbers by looking up my name, please?  I'm diabetic and having a little low blood sugar at the moment and I need to drink this juice."  I hand the teller my license and raise up the bottle of juice with my other hand, like one of the Price is Right models.

"No problem.  I'll get your account numbers.  Do you want to have a seat?"

"No, no thanks."  I drain the bottle between words.  "I'm good.  I just need to focus a bit and let my blood sugar come up."

He typed some numbers in on his keyboard and passed my receipt through the bank printer.  "This isn't some elaborate plan to rob the bank, is it?"

I laughed.  Just drinking the juice alleviated the low-panic enough for me to act like a normal (slightly sweaty) person.  "I'm not robbing the bank.  But I may take one of those free lollipops, if that's okay."

He hands me my receipt, along with three purple lollipops.  "Here you go.  Why don't you wait a few minutes over there," he gestures towards the bank reception area, "for your blood sugar to come up?  I don't want you to drive yet."

SUM lollipops from the bank."Okay.  Thanks for your help."

And I teeter carefully on my heels (far too high for such a low blood sugar) over to one of the plush, blue chairs.  Sinking into the chair and waiting for the juice to do its thing, I unwrapped one of the lollipops.  My feet didn't quite reach the floor, as I was sitting so far back in the chair.  But I was starting to feel better.

People came in and out of the bank over the next ten minutes while I rested, looking over and most likely wondering what that grown woman was doing there, face flushed, swinging her feet, and sucking happily on a lollipop.

March 09, 2012

"What is this?"

Responses I've received to the question, "What is this?" when referring to my insulin pump:

"Is that the new Android?"
"Totally a universal remote."
"Why do you have your garage door opener with you?"
"Is that to keep track of your daughter on GPS?"
"iPod."
"Isn't that to test whether or not an electrical current is live in a wall socket?"
"A an electronic level."
"Dude, a beeper! Beepers were cool.  I'd totally go back to one, too."
"How many gigabytes does that USB hold?"
"Is that a colostomy bag?"
"Coin holder, like waiters have?"
"That looks a lot like the pocket rocker thing from the 80's - remember?"

And then this one:It's also not a tumor.

"One Touch Ping."

I was surprised.  "How do you know that?"

"Because it says it on the screen."

Touché, observant one.

March 08, 2012

Guest Post: Handling Lows.

Today's guest post is from Leah, a person with type 1 diabetes, a nurse practitioner, and she's prepping for a 60 mile bike ride for the Tour de Cure. She writes today about dealing with lows in situations when you're expected to think on your feet ... like when you're dealing with patients.

*   *   *

LeahAs a woman who's lived with diabetes for most of my childhood and all my adulthood, I'm well versed on how to be a good patient. I try not to be late to appointments, I bring my list of medications, I know all my doctor's addresses and phone numbers, and I always forgive healthcare providers who are running late (take a good book!).

I also happen to be a nurse practitioner, and I try to be good at that too. I try not to run late, I answer patient phone calls and emails promptly, and I listen with my eyes and ears. What I'm less sure about is how to be a healthcare provider whose life is sometimes interrupted by diabetes. I had a bad diabetes day recently, and it made me remember how frustrating diabetes can be.

I see patients in an office, and have patients booked every 30 minutes. Some days are full and I barely have time to eat, while others are slower and not every slot is filled. The problem comes when I have a bad low blood sugar that I don’t catch in time, which means that I feel completely gaaaah (that’s a medical term) and can barely remember my own name, much less what drug I should be prescribing for my patient.

These bad lows don’t happen very often because I can usually catch them before I feel gaaaah thanks to my Dex CGM. But when a bad low strikes, it means that I have to stop what I’m doing, eat enough to feel better (but not so much that I hate myself later), then wait. And wait and wait until my brain fog lifts and I’m ready to see patients again. I can usually do this eating and waiting between patients, but it make me late for the next patient, and the one after that, and so on.

And on the rare occasion when I have to stop mid-patient visit, I’m never quite sure what to say to the patient. It’s not that I don’t want them to know I’m diabetic—I wear my pump on my hip and I talk about living well with diabetes to anyone who will listen. But I don’t want my patients to see me as vulnerable or incompetent. I want to maintain a professional distance.

So here’s my question: How do you deal with lows in settings where you’re expected to think on your feet? Have you ever felt disrespected by someone who witnessed your low? Should we care what other (usually uninformed) people think?

*   *    *

Leah is a 38 year old wife and mom who lives in Southeastern Massachusetts. She's a self-proclaimed Southerner at heart, having been raised in Nashville, Tennessee. She says, "I feel lucky to have a job I love that allows me to learn something new every day" This coming July, she's planning to ride 60 miles on her bike in the Tour de Cure. You can find Leah on Twitter: @photosinpink.

March 07, 2012

Second Verse, Same As the First.

As Albert Einstein once said, "Pbbbbbbbblllt!"Monday morning, I woke up at a blood sugar of 82 mg/dL. I had a cup of coffee, half of a banana, and two scrambled eggs for breakfast.  I took 2 units of Humalog insulin to cover my meal, and then spent the morning playing with Birdy and doing some writing.  Two hours after eating, I was at 143 mg/dL. 

Tuesday morning, I woke up at a blood sugar of 98 mg/dL.  I had a cup of coffee, half of a banana, and two fried eggs for breakfast. I took 2 units of Humalog insulin to cover my meal, and then spent the morning playing with the Birdzone and answering emails.  Two hours after eating, I was 285 mg/dL.

What.  The.  Eff?

Albert Einstein once said, "The definition of insanity is doing the same thing over and over again and expecting different results."

I think the definition of diabetes is doing the same thing, over and over again, and waiting to see which way the wind is blowing that day.  Or maybe the definition of "insanity" is "diabetes."  ;)

March 06, 2012

Testing Birdy.

(This moment happened a few weeks ago, during the same week that Birdy was sick with Pukefest 2012 and she was so dehydrated. I wanted there to be a definitive conclusion before I shared it. And I also wanted to be a little calmer, too. Everything is fine now.)

Just watching her, laying on the bathroom floor and acting … grouchy? Irritable? Weak? I recognized something in the way she was behaving. I knew something wasn't right. And it wasn't mother's intuition. It was recognition.

I sat on the floor next to her and took my glucose meter off the bathroom counter.

"Mama is going to test her blood sugar. See? You've seen this before."

"Meh-cine?"

"Exactly - Mama's medicine. So I'm going to use this little blue thing and prick my finger and - oh, there's a little bit of blood! It didn't hurt. Now I'll stick it on this machine and we'll wait and see what Mama's meter says."

My blood sugar was 104 mg/dL. The irony of that "on the box" number wasn't lost on me.

"Okay, now it's Birdy's turn, right?"  I swapped out the lancet for a new one, and as I put a new test strip into the meter, I asked my daughter to let me see her foot.

"I'm going to check you now, okay? Like we did the other night? It's fine - Mama is super fast at this. Ready?"  And I took her little foot into my hand and pressed the lancing device against her heel. For the first time in decades, I thought about how the lancing device worked, and how the spring shot the lancet forward. How the needle pierces the skin and you have to squeeze to draw forth that drop of blood. I remembered that it hurts.

"Oh, okay Mama."

She wiggled uncomfortably while I coaxed out a drop of blood, and the seconds scraped by like the windshield wipers against ice that just won't melt on the glass.  The meter beeps, and I see a 56 mg/dL.

The next few minutes go by in a strange, nervous haze and I force her to eat some fruit snacks and have a few sips of juice. Her disposition improves, and her mood seems to change just a bit for the better. But it's hard to tell because she still has this horrible flu and is so, so dehydrated that when she cries, no tears come. I have absolutely no idea what to think, or how to react, or what to do. I gather her up in my arms and call the pediatrician.

After waiting for a bit (it was after office hours), she calls me back and we talk about what's going on.  I told her about how we were at the ER earlier in the week, and how the ER docs ran labwork, including blood sugar, and how Birdy's was low.  "Fifty-nine, and today she was 56." I said into the phone, and Birdy snuggled into my shoulder. I reiterated what the pediatrician at the ER said, which was that a severely dehydrated toddler can run blood sugars that are slightly lower than normal, due to the lack of hydration. And then I asked her what I should do.

"This is a unique situation, because most people don't have the tools to test their child's blood sugar at home. This could happen to a lot of kids who have the flu, and there isn't a means of tracking the data. I agree with the emergency room doctor, in that your daughter's numbers aren't way out of range. They're just slightly lower than what's considered normal for toddlers. If she were running high, we'd have a different course of action."

She and I decided that I should keep an eye on Birdy as she recovers, and to use my own discretion about testing or not testing her. I made a follow-up appointment with her for the next morning. As the week ran its course, Birdy recovered from her illness, the pediatrician gave her a clean bill of health, and we moved on once Birdy started dancing in the kitchen again.

But it stayed in my head, those moments.  The following week, after her illness, I randomly checked her blood sugar again. I had to. Everyone blamed her flu and the dehydration for those low blood sugar numbers, but I had to be sure. I needed to see an in-range number so that I could let this panic go. I pricked her little heel, a week later and when she was back to her normal, bubbly self, and held my breath as the meter counted down.  86 mg/dL. 

A few days after that, I did one, last, random check.  92 mg/dL. 

She made a face at me and said, "Done? Done meh-cine?"

Just go be a kid, kid.

Birdy is almost two, and this is the first time I've ever tested her blood sugar myself. She drinks like Napoleon Dynamite sometimes, grabbing the sippy cup and throwing it back like she's just paced with Jay Hewitt for an Ironman. Some mornings, she wakes up and her diaper is soaked.  Some days, she's just plain grumpy. But it's par for the course of any kid, at this point. I know the signs of diabetes, and I do not ignore them. Right now, she's fine and healthy and safe. And we're going with that.

"Done, baby. All done."

I know what to worry about. I refuse to wait for something to happen that may not ever happen. As I've said before, if her health status were to change, my job is to ensure that her 'happy' status doesn't.

March 05, 2012

Dotties.

I guess it's good to have blood glucose testing options?

Whenever this happens, I always want to check using all three dots to see how different the meter results will be.  Oh, BG randomness!!
Dotties
: When you prick your finger, squeeze, and about five holes show up with blood. Also known as a "bloody constellation." (Ew.)

(Check out more from the Diabetes Terms of Endearment ebook!)

March 02, 2012

ATMs Being Circled By Sharks.

My husband is a nice guy, but he writes some pretty twisted stuff. Case-in-point is ATM, a movie that unnerves me and is being released this weekend on VOD and in theaters on April 6th. Chris and I had a quick chat about the film ... and Rolos.

*   *   *

ATMKerri:  So, Chris ... you live here.  In our house.  We're married, and you seem to like me.  So why do you keep writing movies that make me nervous?

Chris:  Because they make other people nervous, too.  And those other nervous people spend their money on these movies, which allows us to remain in this house.

Kerri:  Excellent point.  Okay, so today is a big day.  Your second movie is being released today.  Can you tell me a little bit about the film?

Chris:  You know what the film is about …

Kerri:  Work with me here.

Chris:  The film is horror-thriller called ATM. It's a story about three coworkers who, instead of having what they thought was going to be a fun night after their company holiday party, end up in a fight for their lives.

Kerri:  This is exactly why my mother asks me if I sleep with one eye open. What do you mean by "a fight for their lives?"  And why is it called ATM?  (And pretend I haven't read the script.)

Chris:  The fight for their lives part is as literal as it sounds.  The movie is called ATM because, like Buried, it's a contained thriller.  Most of the action takes place in and around an ATM vestibule, with an unknown killer stalking the main characters like prey.  Sort of like Jaws circling the boat.

Kerri:  I am scared of sharks.  And now I'm sort of scared of ATMs.

Chris:  That's actually what I'm hoping.  This movie plays with the very real, very scary idea that something like this could happen to any of us, at any time sort of thing.

Kerri:  So those ATM booths like in the middle of parking lots?  Like the stand-alone ones?

Chris:  Right - it's not attached to a bank or a mall or anything.  

Kerri:  And there's a guy outside, trying to kill them?

Chris:  Basically, yeah.

Kerri:  For what - their money?  Do these people have something he wants?

Chris:  Yes.  ... Rolos.

Kerri:  They are the most bomb candy.

Chris:  I know.  But in all seriousness, that's part of what the characters are trying to figure out - what does this guy want? - until it becomes pretty clear that the "why" doesn't matter; what matters is surviving.

Kerri:  Do any of the characters have diabetes?

Chris:  No.

Kerri:  Are they at the ATM to take money out to donate to a diabetes charity?

Chris:  Um … no?

Kerri:  Then why are we interviewing you on my diabetes blog?

Chris:  You said you had writer's block.

Kerri:  Excellent point once again.  And last question - where/when can people see ATM?  

Chris:  It comes out today [Friday, March 2] on Video on Demand (VOD) and digital download (iTunes, Amazon, etc), and will then see a limited theatrical release on April 6th.

Kerri:  I can't wait to see it.  And then have nightmares about ATMs being circled by sharks.

Chris: We're gonna need a bigger ATM.

March 01, 2012

From Abby: My Stupid A1C That Makes Me Cry and is Stupidly Stupid.

(Note from Abby (actually, this whole post is from Abby, but this is her disclaimer part):  The following story comes from Abby the PWD and not Abby the RN. Abby the RN is totally non-existent when I walk through a patient room door as a patient, even if it is in the office where I work.)

*   *    *

This is a clipboard.Today I had a really tough endo appointment. Really tough in a way that I never thought possible. I got my lowest A1c ever, and I was really bummed out about it. I thought the day I saw 6.5% I'd be planning a party and buying new shoes, but instead I got a sick feeling in my stomach and fought back tears.  I know that you're thinking, "What the hey, I'd KILL for a 6.5%," and so would I, if I earned that number through good, steady, in-range numbers. But the way I "achieved" this number is through being way too low, way too often. Something like 30% of my sugars were under 70 mg/dL. In the last month, I've seen 40 mg/dL more times than I can count. I knew my A1C would be lower, and I was not excited about it.

I downloaded my meter at work last week to get a feel for what was going on pre-appointment. It hit me like a ton of bricks when I saw the printout, and all those numbers in italics. I proceeded to use the dreaded red circle technique (except I used a highlighter, and I highlighted the low numbers instead of the highs). The amount of yellow spots on that paper left me speechless. It was only then I realized how much work I had ahead of me. I immediately found a few patterns, adjusted some basals, and put the numbers out of my mind.

Until today.

See, the issue is that I don't feel my lows until I'm in the 40s. And then I get hit with slight confusion and the inability to form coherent thoughts. My doctor explained to me this morning, that I've lost the ability for my parasympathetic nervous system to respond to low blood sugars - which is supposed to happen in the 50-60 mg/dL range. My body now skips straight to a neuroglycopenia response - or lack of glucose in the brain, which is very similar to having a stroke. Not saying it's the same as a stroke - the biology is way different - but your brain reacts the same way.

This is not good news. She assured me that if I let my sugars run higher for a few weeks, I should get the typical low feelings back, as my body adjusts to higher numbers. Unfortunately at this point in the appointment I wasn't able to come up with any good questions or plans. I kind of just sat there nodding and taking in what she was telling me. A quick physical and some refills later, I was back at my desk attempting to regain my "nurse brain."

A few hours (and lots of coffee later) I wandered down to the CDE office and they helped me adjust my pump to achieve some higher numbers without feeling like crap all the time, doing it gradually and safely. (CDEs are my best friend when dealing with my own diabetes, because I'm useless at fixing myself. Just can't do it.)

I think the hardest part of the day, aside from the whole "this is your brain on drugs" portion, was the reaction I got online from people when I announced my 6.5%. We work so hard every day for that dreaded quarterly report card, that we often forget to think about how that number came to be. I appreciate the love intended in the responses I got on Twitter and Facebook, but I just wanted to scream because this number shouldn't be so important to us! An A1C isn't meant to prove our worth as people with this stupid disease, it's a guideline to let us know how our long term control is. And that is not how we use it, at all. I'm the first one to admit that when I see an A1c under 7%, I think "Wow, great job!" even though I have no idea what influenced that number.

Anyway, I guess the moral of this wicked depressing story is that while we get a lot of criticism for A1cs over 7%, and an unfair judgement for over 8% - I think there is so much more to the story that we need to be asking of each other. A nurse in my office asked me, "And how do you feel about that?" after I told her about my 6.5%, and it made me feel so much better to be able to really talk about it.

So the next time you hear someone's A1C, whether it be 6.1% or 11.8% - ask them how they feel about it. Because there is more to diabetes than someone's A1C.

*   *   *

Numbers, in diabetes management, need context. I hear you on this one, Abby. 

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