The Bigger Diabetes Picture

After months of struggling with my Minimed Continuous Glucose Monitor Carelink settings, I’ve finally done it. I’ve figured out how to upload all of my CGM information to the big Carelink cloud in the sky. And I’m uploading that information every few weeks, so that I, and my Certified Diabetes Educator, can look over all the pie charts and line graphs and color-coded calendar icons and make changes to my basal rates and carbohydrate ratios on a more frequent basis.

I should be proud of myself, and I am — to an extent. This whole baby-growing-in-my-diabetic-body thing kind of forced the issue, so I finally committed myself to spending an hour and a half on the line with Minimed’s technical service team. Some poor soul named Aaron patiently walked me through the wonky process of tricking Java into working on my home computer’s operating system (it’s a long, nerdy story), and for the first time since I’ve had the CGM, I felt like a full-fledged diabetes robot.

The first few uploads were thrilling, as ridiculous as that sounds. Here was my entire diabetic life, recorded in detail and illustrated in full color, ready to share with the world. Unfortunately, it only took me a few weeks of uploading and reviewing to realize: here was my entire diabetic life, recorded in detail and illustrated in full color, ready to share with the world — and that picture isn’t always a pretty one.

Skiing, anyone?

I call it “Still Life with Dead Pancreas.”

During my first pre-natal visit to my CDE, she brought out several weeks’ worth of printed records. The lines on the graphs peaked and plummeted, jerking up and down according to those diabetes variables we all know and love: food, stress, exercise, baby-building hormones. A devastatingly narrow green rectangle ran the length of the chart, representing the range that those lines should have been confined to. Instead, they were dancing all over the place.

“What do we think’s going on here?,” my CDE asked, gesturing to a mountain range that spanned the 6 p.m. to 10 p.m. landscape of the chart.

“I’ve been low a lot in the late afternoon,” I guessed. “I think some of this may be me over-treating the lows right before dinner. And I had pizza a couple of those nights.”

She pointed out a few other trouble areas, and we made some small changes to my afternoon and overnight basal rates — no big deal. But ever since then, I can’t look at my 3-hour or 24-hour CGM display on my pump and not imagine how it will look when it’s printed out in a few weeks at the Mayo Clinic.

It’s not particularly healthy, but I’d gotten used to viewing my blood sugar fluctuations in tidy little easy-to-swallow snapshots.

This never happens, by the way — which is why I took a picture of it.

The ridiculous thing is that this is why I signed up for this CGM adventure in the first place — to get this vulture’s-eye view of how diabetes behaves on a day-to-day basis. It’s just that now that I have it, I miss my days of relative ignorance.

Diabetes is just one of those things that’s infinitely easier to deal with when you take it one niblet at a time. If I woke up every day thinking about all the blood sugar checks it’ll take to keep me on track for the rest of my life, I would never get out of bed. It’s the same thing with these graphs, even though they’re retroactive. I look at those lines and that little green rectangle and, even though I’ve been doing this for 21 years, I think, “Wait — this is my job? I’m supposed to control this shit? Every day?”

Yes, the graphs are useful — even the Pac-Man pie charts that show you how much your management sucks or succeeds on any given day — but each one challenges the “A1c is just a number!” mentality of self-forgiveness I’ve worked so hard to cultivate.

The perfect response here, I understand, is to view this information as motivating. After all, it’s there to help, right? I need to remember, especially now, that even though everything’s not completely within my control, I’m lucky to have the technology it takes to kick diabetes’ ass, no matter how unattractive the big picture is.

9 comments on “The Bigger Diabetes Picture

  1. Shannon says:

    Oh my goodness – I could have totally written this almost verbatim today. I downloaded my CGM graphs yesterday for the first time in months (I don’t always wear mine) :/ And it looked very similar to yours. Overall, I have felt great about my numbers, they are certainly down from where they’ve been in the past. But when I saw them on paper … I felt like a deflated balloon. To see that I hit 200 every single day. Or that I had a lowest BG of 43. I was all over the place and didn’t even see it. But I’ll march ahead, as you will. For that little bundle you’re cookin’ in there. (BTW I have been T1 for 20 years this year, and I had my son 4 years ago with no complications at all. Was just watched like a HAWK.) Good luck!!! Hang in there, friend.

  2. You are a brave, brave soul to display your CGM charts like that. High five!

  3. Alison says:

    “Still Life with Dead Pancreas” – I freaking love that!! Thanks for making me smile.

  4. Jonah says:

    I have an endo who doesn’t want to see the graphs (he prefers tables) and who, when I told him this A1c was gonna be higher than the last one, said, “That’s okay- that last one was kind of low anyhow.”

    I upload my data on days that I’m feeling triumphant, looking to see the top number of the day (on the Dexcom day by day table, you can see the high and low for each day- I think minimed allows that too) and kind of ignore the rest of it.

  5. StephenS says:

    Jacquie, I can totally relate… I work around systems and computers all day, and I still had to spend 45 minutes on the phone with Medtronic to get my Carelink to work properly. Damn Windows Vista… anyway, I’ve found that occasional tweaks to my basal rates have made a huge difference for me. Especially when dealing with some frustrating lows. We all need some adjustment from time to time! Keep up the great analysis.

  6. Rachel says:

    I have a Dexcom CGM and can change the goal range, soooo I may or may not change it from 110 to 120 every now and then so I can feel better about being “out of range.”

    Congratulations on the pregnancy and I can’t wait to follow the journey. (Is there a way to say that with out sounding like I’m on a daytime tv medication commercial?)

    Consider yourself bookmarked :)

  7. Karen says:

    Oh, ugh, there is nothing worse than a longterm CGM overlay. I occasionally do the whole 3-month A1c period and just STARE at how the big fat swath of leaping lines totally obscure my teeny tiny goal strip.

    That said, looking at it is the hardest part. The rest of it is all forward movement!

  8. shannon says:

    omg that cgm plank is….fucking….epic. WOW.

    also, i quite enjoy your phrase “vulture’s eye view”. it is very evocative.
    wacca wacca (pac man) vs. wocka wocka (fozzy bear)

  9. I can definitely relate to this! (blooged about it a couple of weeks ago, and nice to see another perspective – makes me feel like it’s not ‘just’ me) The worst me is the arrows that point up and down – I swear CGM just makes you into the most paranoid person ever! :-/ I’m uploading my graph tonight – could be interesting! Nice (well, that’s not really the right word!) but it’s reassuring to see someone else’s data that isn’t ‘perfect’ – I envy that straight line at 98 though; that’s never happened to me! Closest was a couple of weeks ago but then it shot up after dinner :(

    Take care – I’m really enjoying reading your blog!

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