Living With Diabetes: (My) First Thanksgiving

I’ve mentioned this before, but one of the things that always struck me about the diabetics I’ve met since being diagnosed is how proprietary they can be about “their data”. I’m not sure why this was always such a surprise– if I’d given it any real thought then it would have been obvious why no one was especially eager to volunteer their A1C or show me the trendlines on their Dexcoms. Now, after living with this disease for 9 months (I feel like I should be birthing a diabetes baby!), and having a Dexcom for 5 of them, I am fully onboard with the concept that “my data” is mine, no one else’s.

From every perspective but diabetes, I had a wonderful Thanksgiving. We went to Virginia and saw my Aunt and Uncle and cousins – who we’ve never gotten to do Thanksgiving with. It was amazing to see them, and even my very old, crotchety dog got to come, stinking up the car on the way down and back with his rancid old doggie breath. We played cards, got in fights about cards. We discussed the appalling state of current events in this country. I was introduced to the show Shark Tank and got to watch my Aunt teach my mother the ins and outs of bridge. I texted my absent sister and brother-in-law with complaints and joys about my family. It was, in a word, wonderful.

From the diabetes perspective, though, it was pretty much a disaster.

For me, there are two different kinds of blood sugar “disasters”. There’s the kind I wrote about in my last post, where I do everything – like, everything – right and still my blood sugar misbehaves. These are brutal. The worst. They lead to long, whiny blog posts and feelings of frustration I tend to take out brutally on those who are closest to me.

But these aren’t the only kind of disasters. There are also the ones where I try less hard – I opt for white flour, or sugar, or a bite of a donut. A slice of pizza. Sometimes despite an already high blood glucose or not having taken insulin early enough. I’m proud to report these are few and far between, but they still happen. Usually because I’m grumpy or tired or PMS-ing and just pissed and thinking, forget it, forget it, I’m not dealing with this tonight. Then, yeah, I have some kind of terrible blood sugar result, but it’s much, much easier to take because, you know, I pretty much knew it was going to happen. It wasn’t like I was bringing my A-Game.

My Thanksgiving disaster was the second kind of disaster, because, as you might have guessed, I didn’t bring my A-Game at Thanksgiving. Now, to be fair, I didn’t bring my F-Game (is that a thing?); I would say I brought a solid B game. A pretty damn good game. When I think of my Thanksgiving plate this year as compared to, say, ANY other year (when it wasn’t a matter of would I make myself sick from eating too much, but rather how sick I would make myself); this year, I’d say I did pretty damn good. If I didn’t have diabetes, I’d have no regrets about my Thanksgiving plate – plenty of turkey, lots of veggies, and smaller portions of the really good stuff: stuffing, sweet potatoes (with sugar!!), and, (due to a surprising cousin tradition), macaroni and cheese. And I had some pie. If I didn’t have diabetes, I would have been damn proud of my choices at this meal. They were totally appropriate for a once-a-year meal.

But I do have diabetes. And until the JDRF gets its ass in gear and cures this thing (just kidding; they’re actually amazing), that will never not be true, that I do have diabetes. So my choices were not A+ choices. They were pretty lousy choices. For starters, I could have, maybe should have, opted out of the pie. My mom very kindly made me a pseudo-pumpkin pie dessert with no sugar and no crust. It was pretty good. But guys, apple pie is apple pie. There is no substitute. And, unfortunately, when my mother began instructing me that I should probably just have the inside of the pie, leaving the crust, because there were a whole lot of other carbs in the rest of the meal, I immediately reverted to my 8, 11, 15-year-old self, being tortured with “suggestions” of what I “should” and “shouldn’t” eat, and vowed with vindictive rage to eat a goddamn slice of that goddamn pie with all the goddamn crust I wanted.

“Do you see what I weigh now?!” I wanted to scream at my mom, “I have never weighed this little in my adult life!!! You are not allowed to talk to me like that anymore!”

Yeah. I’m such a delightful daughter. A delightful person, really.

Of course, as is always the objective truth of these kinds of things, my mother was absolutely right – even with my much-reduced portions, I ate more carbs with Thanksgiving dinner than I’ve had in a meal in the 9 months since I got diagnosed with diabetes. I probably should have cut it all out – the mac and cheese, the stuffing, even “my special” cranberry sauce made with splenda instead of sugar. And I definitely, from a health perspective, shouldn’t have eaten that pie crust.

My body, quite literally, didn’t know what to do with the influx of white carbs and simple starches. Again, the portions weren’t big – but anything bigger than a thimble of a simple carbohydrate is, for me, gargantuan. Oh, and did I mention that Thanksgiving fell at the literal worst point in my cycle that it possibly could have? I was knee deep in PMS; heavily insulin resistant thanks to PMS hormones. Eating “healthy” is usually a challenge for me during this period. In just 9 months since getting diabetes, I’ve learned one hard truth: If I want to eat pizza or ice cream, I know way better than to do it during PMS, when my body has been known to react to Greek Yogurt like I’m eating spoonfuls of cake frosting.

Not really.

But… kinda really.

“My data” for the Thanksgiving weekend is objectively a disaster. My Dexcom “high alarmed” constantly, projecting angry yellow upswings at all hours. When I scroll through my pump and go to the “History” section that lets me see how much insulin I’ve taken over the course of a day, the numbers make my eyes pop out of their sockets.

I took a ton of insulin. And my blood sugar was still pretty high most of the weekend.

And here, my friends, is where I get to that “proprietary” paragraph I started this post with. Occasionally, over the weekend, a family member would see me scrolling through my Dexcom or scribbling furiously in the notebook I keep all my records in, and I’d see their eyes slide to that ubiquitous yellow graph or the notes I was writing. Why not, right? Before I got a Dexcom, I was desperate to lay my eyes on everyone else’s. It’s just natural curiosity.

I get it. I got it. But I don’t like it. Not anymore.

Unless you’re living in my head, and you understand the emotional blood, sweat, and tears that go into every decision I make about my diabetes care, it is very hard for me not to snap at you to please keep your eyes off my Dexcom. I don’t even care if you’re not judging me; I don’t even want you to have the opportunity to judge me. These days, revealing a bad Dexcom graph is as painful to me as being seen in a bathing suit or a sleeveless shirt was when I was obese: it’s exposing of my most vulnerable self, the self that feels guilt and shame constantly. The self that is imperfect. Valueless. That makes bad decisions even when I know the consequences.

When I catch someone eyeing my Dexcom and the numbers aren’t pretty (and crap, have the numbers not been pretty in the last month), my first reaction is to snatch it away, throw it against a wall, break it before they can look longer. My second reaction is to shriek at them to “back off!” the way you shriek at someone when they walk in on you changing. And my final reaction, one I am all-too familiar with, is to offer my myriad excuses:

“You don’t understand, it’s apple pie. I love apple pie so much.”

“I’m PMS – ing.”

“You saw how little mac and cheese I took; you saw it.”

“But it’s Thanksgiving. I don’t want to punish myself this Thanksgiving. I want to pretend I’m normal.”

Even though I’m not.

This excuse reaction is one I’m very familiar with. It’s one that I got used to feeling when I’d go into a dressing room and try my best to squeeze into a Large shirt because oh my god I didn’t want to have to admit that I needed an Extra Large,. It’s one that I got used to feeling when it was so hot, just so hot that I opted for a sleeveless shirt, despite it’s horrific, unflattering upper-arm baring-ness. And it’s one that I got very used to feeling when I’d notice people eye-ing the food selections I made while overweight. The inevitable urge to offer excuses before they could judge my choices.

“You don’t understand, it’s apple pie. I love apple pie so much”

“I’m PMS – ing.”

“You saw how little mac and cheese I took; you saw it.”

“But it’s Thanksgiving. I don’t want to punish myself this Thanksgiving. I want to pretend I’m normal.”

Yeah. The excuses I thought up then – last Thankgiving, say – are the exact same excuses I wanted to offer this past Thursday.

In this way, my blood sugar has literally replaced my weight as my mechanism for self-hate and shaming. I am ashamed of my “bad numbers” the same way I used to be ashamed of my weight. Still am sometimes.

I know there are people reading this who can relate to the weight-shame cycle, but maybe not the diabetes-shame cycle, and to you I say: I’m still feeling it. Just with “blood sugar” substituting for “weight.”

In my very first blog post, I shared the most personal thing I’ve ever shared publically. Ever. In my life.

My weight.

In a blog post that was literally being published for anyone on earth to read, I admitted that at the beginning of 2014 I weighed 211 pounds. Knowing that some of you might find me disgusting for this admission, think me lazy and fat and gross, gape open mouthed at that number the way you gape at a freakshow in a carnival, I still typed the three digits that had kept me shackled to a wall of shame and self-loathing every waking moment of the last year. I posted this knowing that my parents would read it. My sister. And the list of people who could stumble on it is even more frightening: that ex-boyfriend, that former classmate. The Pope. (J/K. The new pope seems like he wouldn’t judge.)

Many of you can, I know, understand exactly what it means for an overweight person to share their weight online. In fact, many of you reached out to me after the first post, citing the bravery of this particular factoid in a way that confirmed to me that, if I expected people to accept this blog as legitimate, and any of my ramblings as at all valuable, “coming clean” about my weight was essential.

So now, although it’ll mean a whole lot less to most of you, I am going to attempt to slow, freeze, or hopefully halt the cycle of self-shame that seems to be developing around my blood sugar, standing in for all the shame and hatred I’ve felt about my weight for the last two decades.

The only way I know how to do that starts, once again, with coming clean about my most shameful factoid. In this case: “my diabetes data”.

Again, I know the facts I’m about to share aren’t as universally understandable as weight. Most of you will probably read them and they will just be numbers on a page for you. But take my word for it: this is as hard for me to do as posting my weight was.

So here we go.

On Thanksgiving, my imperfect, PMS-y, white-carb-eating Thanksgiving where my blood sugar stayed over 200 most of the day; hovered closer to 300 in the really bad moments, I took a colossal 56 units of insulin.

Sixteen of those units were with dinner alone. Sixteen.

And I didn’t even keep my blood glucose in range. Meaning I actually really needed more.

Again, I know this doesn’t have quite the shock value of 211 pounds, but to give you a little bit of context: if you think back to dear, dainty Babysitter’s Club Type 1 Diabetic Stacy: that chick probably didn’t take more than 3 to 4 units of insulin in a meal. Maybe 25 units a day? (I know she’s fictional; I’m postulating here.) Sixteen units of insulin would have probably killed Babysitter’s Club Stacy. And I’m not saying that as an exaggeration for comic effect: I mean that would have plummeted her blood sugar down faster than she could have kept up with carbohydrates and she probably would have died.

So there it is, my purge, my shameful overshare: my name is Jessie and I am a Type 1 Diabetic who needed 56 units of insulin on Thanksgiving. And, oh yeah, that didn’t even actually keep my BGs in range.

In the future, if we’re hanging out and I take out my Dexcom, please don’t blame me if I pull it away if I catch you peeking. It’s an instinct that I can’t help; an ashamed, embarrassed instinct that I honed over 20 years of being overweight, obese: a learned ability to equate “my numbers” with my self worth. I don’t exactly know how to free myself from the burden of this instinct; all I know is that shame seems to thrive in private. Much moreso than in public. Put more simply: people probably don’t find you as disgusting or reprehensible as you fear they do. When in doubt, sharing might just be the answer.

That’s what this whole post is betting on, at least.