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Hard to Capture.

With Twitter as the medium, there’s only so much that can be captured with only 140 characters at your disposal, especially when there are always so many juggling balls aloft.  Since it’s mostly intrinsic, these thought processes, I forget what parts are unfamiliar to people who aren’t living with diabetes.  After looking back at the Storify-version of my #dayofdiabetes experience, there’s so much there, but at the same time, there’s so much missing.

How can I explain how hard my family has worked to make sure we have insurance coverage?  And how the guilt of 16u of insulin left in my pump sometimes forces me to change the infusion set that’s in my skin in order to squeeze out the last of the insulin from a cartridge before changing that part out?  Insulin pump site changes aren’t always done “in full,” with the cartridge and cannula changed simultaneously.  There have been years in the last two-plus decades where we’ve paid nothing for insulin, and then pockets where we’ve paid the full cost.  Knowing how swiftly things would go bad if I didn’t have access to insulin is humbling.

Or the guilt that comes with this kind of mistake.  I very rarely forget to bolus for the food I’m eating, but that day, the toddler wolfed down her lunch and then was ready to bolt outside and play, and as I was cleaning up the neglected turkey and cheese sandwich, I polished off the second half of it.  And then promptly forgot to bolus.  “Frustrated” doesn’t really begin to touch the rage and guilt that sets in at this point.  I hate that there is so much about diabetes that remains out of my control, but when I can pinpoint exactly where my day went off track and it’s the result of something I forgot to do?  I have a hard time with that.  The guilt that ends up folded into so many parts of the diabetes decision making process can be intense, and relentless.  “I’m high because I was stupid and forgot to bolus for something that clearly carried a pile of carbs.”  If it were anyone but me, I’d tell them to just correct the blood sugar and try to move past the guilt part – “There’s no point in feeling guilty!  That just adds to feeling rotten.  Correct and move on.  Keep trying your best.” – but I’m not able to take my own advice.

It’s not simply guilt that’s hard to capture; sometimes it’s hard to really explain why a moment might make me so freaking proud.  Like the fact that a gross high blood sugar derailed me for a couple hours, but I still made exercise part of my day.  Exercise used to be something I actively (ha?) avoided, but slogging my way to the gym even though I felt crummy, and then leaving feeling better, and empowered, and more in control makes me feel proud.  It’s not a big deal, and it’s not a victory that anyone else would notice, but it was a good moment for me.

Same with graphs like this.  I have worked hard to make sure my overnight basals are solid, and that I’m able (for the most part) to go to sleep at an in-range blood sugar and wake up in the same in-range ballpark.  This isn’t an accident –  this is a most intentional moment.  It’s hard to capture why a Dexcom graph that’s between the lines matters so much because it seems like it’s the result of a block of time “without incident.”  It’s hard to explain how much work goes into keeping these moments as incident-free as I can manage.

A day with diabetes looks a certain way, all tucked into Twitter with a neat little hashtag.  But it’s hard to capture what we really do every day, as PWDs or caregivers.  Outside of this DOC-bubble, people wouldn’t understand high-fiving over a blood sugar result of 180 mg/dL (but did they know you were 230 mg/dL an hour earlier?).  Or why a person with diabetes would eat sugar tablets (but did they know your blood sugar was 34 mg/dL?).  Or why a “sugar-free” pie still requires carb counting and insulin (“But it’s sugar-free!”).

Participating in #dayofdiabetes was eye-opening for me, because I realized I didn’t have enough API to handle updating Twitter as much as I needed to, to account for all the times diabetes crossed my mind throughout the day.  And then again, I realized how many times diabetes crosses my mind for simply an instant, letting me continue forward in a day that, in reality, wasn’t owned by diabetes in the slightest.

9 Comments Post a comment
  1. One of these days I might get up the gumption to join ya’ll in a #dayofdiabetes event. But right now, I’m pooped out from too many weekends away from home, so for now I will say, “you go, girl!!!”

    05/28/13; 10:07 am
  2. I really enjoyed you going back through your day and explaining your thoughts about the different things you experienced. I don’t think regular people know just how ofter you have to think about diabetes and how bad it can make you feel when things do not go as planned. This is even harder when you are responsible for a five year old and you know that even though you did the best you can he still feels like crap for a while because something didn’t go right. Should I have changed that site earlier? Should I have put his site somewhere else even though he doesn’t want me to.

    Just so overwhelming all of the time!!! I may not have T1D but I guess I get to live with the guilt and most of the experience of living with T1D. I am a diabetes dad and it is my job to make sure I had off my son in the best state I can to him when he get old enough to handle it. He doesn’t even stop to think about it most of the time. I think that Celiac is harder to deal with for him because that is where he really feel different from the other kids.

    Thanks for the incites and the time it takes to let us be part of your life.

    05/28/13; 11:49 am
  3. Sarah #

    I came across you post this past weekend while I was up at 2am waiting for my daughter’s blood sugar to rebound from a 55. Although I have a twitter account I decided to document my #dayofdiabetes on a sheet of paper. I think this is an excellent way to show exactly what a day is like and educate others on what goes on in our heads all day every day. And yet no two days are the same. Thank you for introducing this to me!

    05/28/13; 11:53 am
    • I’d love to see your take on #dayofdiabetes, from the parenting perspective. Gives me some insight as to how my mom may have handled things.

      05/28/13; 2:55 pm
  4. I haven’t been able to do this (NO tweeting at work, no smartphone), but I’ve been fascinated at what I’ve seen so far, and what kind of reactions the various diabetes goings-on have caused. Thanks for sharing this, and pointing out that it’s still not everything.

    05/28/13; 12:26 pm
  5. You’ve covered a lot of unsaid diabetes thoughts & moments here, Kerri. You painted a picture with words AND pictures, where the pictures make up the words left unsaid, and the words making up what the pictures don’t capture. Sounds confusing, but you did a masterful job here, yo.

    05/28/13; 11:29 pm
  6. That second tweet really means a lot to me. After somehow “forgetting” my breakfast bolus on Monday, I felt like total crap – guilty that I could miss something so important and so routine (despite the low blood sugar and a sick toddler which became my excuses). Knowing it sometimes happens to the best of us, not just me, is a bit comforting, if not reassuring. Thanks for your honesty.

    05/29/13; 8:03 am
  7. Nell #

    Missed bolus….that’s my issue with using Verio IQ. So, I’m back with my Ping meter, and shooting up before each meal!

    05/29/13; 3:30 pm

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  1. Another #DayOfDiabetes, Twitter-Style. - Six Until Me - diabetes blog

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