Living With Diabetes: National Diabetes Month

It’s National Diabetes Month! What are you planning for your family’s annual Diabetes bash? Are your Diabetes Stockings hung by the chimney with care? Did you put your used glucose test strips under your pillow for the Diabetes Fairy? Have you been reading and re-reading all your kids’ favorite Diabetes Fairy Tales, like “Twas The Night Before… The Day I Found Out I Had Diabetes (and I was peeing sugar!)” or “How the Grinch Reversed his Type 2 Diabetes?”

Relatively speaking, I am a Diabetes baby. A 7-year-old who was diagnosed at 2 has 700% more experience with this disease than I do. It’s bizarre to think about – but, in a lot of ways, I feel like a baby.  Everything is still new, hard, stupid, pointless. I notice that even though I’m starting to accept many aspects of diabetes as a part of my day-to-day life, every once and a while I feel a shred of resistance, like I’m being brainwashed or hypnotized but my old self isn’t going quietly; it’s insisting that this is bullshit and no one has to live this way.  Even as my new self has started to acquiesce to the constant fingersticks and testing and lows and highs, I have an occasional moment of “BUT MOST PEOPLE DONT HAVE TO DO THIS, JESSIE.”

I was talking to someone the other day who said that they’ve noticed an anger in my blog; one they described as “refreshing”. It surprised me to hear it at the time; I hadn’t been aware of an anger, per se, but then I re-read some posts; the early stuff especially, and I saw it. My anger with Dr. Smug, my anger with myself, my anger with the utterly pointless challenge of Diabetes.

Its true. I’m angry. Was that coming across? I’m asking that sincerely – because I hadn’t realized it until the other day, but maybe you’ve been reading this all along thinking “shit, that girl is angry!” I haven’t given much thought to my anger – I’ve sort of let it simmer in the background without really acknowledging it, but I’m angry.

I’m very angry that this happened to me. I’m angry about the burden I’ve become on friends and family. I’m angry about the burden diabetes is on me. I’m angry every time my blood sugar does something it’s not supposed to do. That happens at least once a day, and usually more. I’m angry that I can never again open up a bag of Stacey’s pita chips and eat the entire thing. I’m angry when my Dexcom wakes me up in the middle of the night with a high or a low alarm, and I’m angrier when I sleep through it. I’m angry that most of you don’t have to deal with this, and I do. I’m angry that health insurance is such complete shit. I’m angry that every relative I have now has to be a little bit more worried that their offspring will have Type 1 diabetes. I’m angry that that feels like my fault. I’m angry that right now, as I type this, my blood sugar is 140, which, by the way, isn’t even a BAD number, but I’m angry because I can pretty much guarantee you that you, dear reader, do not have a blood sugar at 140 right now. Yours is much lower and much better and you’ll probably never have to worry about something like a blood sugar of 140. (I say that because I assume that I don’t have any readers who are Type 1 diabetics. But if I do — OHMYGOD THATS AWESOME! Not sure how you found me but welcome! Sorry that I’m so, uhm… angry this post!)

I’m also angry that if I ever decide to have a child, I will spend the rest of my life worrying that it will get this disease, even though the fact that I’m female, coupled with the fact that I would be getting pregnant over age 25 and that I got diagnosed in my 20s, means that future baby Bear has pretty much the exact same statistical chance of getting type 1 diabetes as the general population – about 1%. But I’m still worried. And that makes me angry.

I’m angry that I got diagnosed in 2014, and not 2024 or 2054, when I’m fairly positive the technology will have made this disease way, waaaaay easier to deal with.

But mostly I’m angry that I can’t really go more than, at max, a few hours without thinking about and dealing with and managing diabetes. And that, despite my vigilance, I don’t think I’m very good at it.

So far, I have feted National Diabetes Month by watching videos like this one, which the JDRF created to show how impossible this disease is. I binge watched like, several hours of these types of videos today. And guess what? They made me angry.

As angry as I am for myself, I’m angrier that a 7-year-old has to deal with what I’m dealing with. Because you know what? I’m a grown ass woman. I can bitch and moan about how tough diabetes is, but I got to live 26 years without it. I never had to manage blood sugar when I was SEVEN. Or 5. Or 2. My parents never had to count carbs for me. I didn’t get rejected from pre-school because there was no medical professional on staff to oversee my diabetes care. I didn’t have to deal with puberty and diabetes at the same time.  And while my diagnosis definitely upset my parents, I never made my dad say “Some days are hard, and his sugar won’t go down, and you’re exhausted…and you wonder: did you just take a year off his life?” (If you didn’t watch that video, the dad said it in that video. It’s brutal). I have those worries, myself, on days when I’m exhausted, and it’s hard, and my sugar won’t go down, but THANK GOD I get to shoulder them and I never made my parents have to shoulder that.

One of JDRF’s big fundraising pushes this month has been to have people who have been living with diabetes fill out these little signs to show how many years they’ve had diabetes, and thus how many fingersticks they’ve had to use (those are the test strips that suck up our blood to show our blood sugar reading after we’ve pricked our fingers.) Mostly, it’s images like this one — 58,400 fingersticks!

I did my calculation the other day: about 8 months of diabetes X an average of 10 fingersticks a day (although often as high as 25) = 2,480 fingersticks. It’s no 58,400, but I’ll get there. Already over 2000 in 8 months; it’s kind of staggering.

So, happy National Diabetes Month. I have but one wish this Diabetes Holiday Season: that National Diabetes Month is not something that you ever have to celebrate.