happy diabetes day, apparently

Who wants to hear about the time I ended up in the hospital?

November 14, as I learned for the first time ever early this afternoon when a friend heard about it from his diabetic dad, is World Diabetes Day. I don’t normally consider it a very important aspect of my life, but it does seem like the sort of thing worth talking about at some point—and I suppose it would be a reasonable way to celebrate the occasion.

I was diagnosed with type 1 diabetes in late February or early March 2018, shortly before my fifteenth birthday. For months¹¹ I don't know if I ever knew the exact time frame, but I'd be surprised if it was substantially less than two months at any rate. I had been losing weight—it’d had a dramatic impact on how my clothes fit—and occasionally having to get up in the middle of the night to use the restroom annoyingly many times²² At least that was still a couple years before my youngest sister aged out of my parents’ closet and we rearranged the rooms, putting me in the basement. The flight of stairs would have made it so much worse.. But for those weeks or months, that was about all it was. I felt nauseous on a few nights in the weeks leading up to the diagnosis, and I think I threw up in the middle of the night once, but neither I nor anyone else in my family noticed anything particularly wrong. The mysterious weight loss was too gradual for me to really notice any confusion, all the issues seemed like random disconnected bouts of minor food poisoning and such.

And then, one week, I got Actually Sick. It was really bad. I could hardly get myself to eat breakfast, even if it was just jam spread on toast³³ I think I was often trying peanut butter on toast, on the theory that I desperately needed the protein. Peanut butter on toast doesn’t sound like the easiest thing to eat to me, though, and I don’t think I was finding jam any easier.

Nowadays I would suggest ice cream as the goto for someone having trouble eating—probably just raw calories that aren’t pure sugar is helpful, who cares if it’s fat. But ice cream is a dessert, and desserts aren’t Healthy, so you need to be willing to be a little weird to decide that yeah actually ice cream is a good option sometimes when dealing with illness.

Even if I’d realized it at the time, I couldn’t blame my parents if that smelled like rationalization to them! But no, I do think the argument is sound, even if the sticking it to Big Spinach Brownie is part of the appeal. or something. Every flight of stairs I had to climb at my high school was a grueling step-by-step slog that my body had no energy for… in the mornings.

By the afternoons I was typically capable of eating normally and walking around without feeling so much like I was a moment away from collapsing. The fact that my parents mostly saw me in the afternoons is probably part of why they kept forcing me to go to school. By Wednesday, my dad was sitting me down and telling me about a time my grandma had stress-induced stomach ulcers, or something like that. I think my wild guess was “some sort of worm that was stealing most of the energy from the food I was eating”—something difficult-to-articulate about the somatic qualia of a high blood sugar feels the way that I imagine such a worm ought to feel, though I don’t expect that it’s actually quite the same experience. It’s not quite hunger, but it’s… hunger-adjacent? Things like the energy loss and the difficulties with food were salient to me, so some weird sort of stomach bug felt like a plausible guess—and I was pretty sure it wasn’t a stomach ulcer.

For a while I’ve had a guess about what was going on with the “more energy later in the day” thing. The central point is that exercise can make muscles better at making use of blood sugar. So if your pancreas is slowly dying from autoimmune issues, and is starting to struggle to produce quite as much insulin as it should—you’ll be kind of screwed when you’ve been laying totally still for eight hours, but moving around a little as you get through an unusually terrible day of high school can appreciably compensate. So the “something’s getting in the way of the food I eat actually turning into energy I can use” intuition was basically correct, even if “worms” wasn’t a great guess for what the specific something was.

Since I was actually putting that guess on the record, I thought it was worth checking what Claude thought the explanation was. Claude did independently identify physical activity as a contributing factor, but it suggested a different primary cause:

The most likely culprit is the dawn phenomenon combined with your undiagnosed diabetes. Even in people without diabetes, blood sugar naturally rises in the early morning hours (roughly 4-8 AM) due to hormones like cortisol, growth hormone, and glucagon that your body releases to help you wake up. When you have insulin deficiency or resistance, your body can’t handle this surge properly, so blood sugar climbs even higher.

I have definitely noticed weird blood sugar spikes in the early morning before, they've been pretty annoying, but none of my endocrinologists ever explained to me that this was like, a well-studied thing called the dawn phenomenon, and I’m a little mad about that⁴⁴ Admittedly I never specifically posed the question, but it’s not like an endocrinologist has never noticed my chart showed a pattern of overnight highs and suggested a higher basal insulin dose! Maybe they (correctly) ruled it out as the primary issue because it was starting too long before dawn, I don’t blame any particular person, I’m just bemused I’m only learning about this now from Claude.. I assumed it just had to do with day-to-day dietary or insulin-dosing patterns or something.

Anyways, things started getting worse on Friday. My mom was driving the car pool to high school, and had to turn around and drop me off at home when I vomited in the car a little before we left the neighborhood. From that point on I mostly laid on the living room couch, too sick to do much else. I mostly only ate fruit smoothies or milkshakes and such, since they were the only thing I could—but, it turns out, those aren’t the greatest for your blood sugar.

If I’m remembering correctly, my mom made plans to take me to our family’s pediatrician in a few days, and then eventually, maybe on Sunday or so, got concerned enough to get her to see me immediately and drove me to the office. I think this was where I first heard the “diabetes” guess.

I was vaguely familiar with diabetes—my best friend had had it back in middle school. From what I had seen, mostly this meant carrying glucose around and going to the school nurse for an insulin shot around lunch time. I don’t quite remember if he’d started an insulin pump yet in middle school or if that was later. It was a weird enough coïncidence to make me wonder if there could’ve been some sort of shared environmental cause—I’m not sure if that’s very plausible.

I don’t know if they were actually able to like, check my blood sugar or ketones or A1C or whatever else would've been a dead giveaway while I was still at the doctor’s office—I just remember not feeling like it was totally confirmed yet. But maybe that was just because they didn’t tell me they were making an official diagnosis.

What was totally clear was that we were heading to the emergency room. I was in, it would turn out, pretty bad diabetic ketoacidosis. It’s sort of like a keto diet, except instead of not eating carbohydrates you just leave⁵⁵ Well, except for your liver doing its very best to compensate for all the problems. Hence diabetes mellitus. And hence the dehydration. them all in your blood!

Diabetic ketoacidosis (DKA) is a potentially life-threatening acute complication of diabetes mellitus. Signs and symptoms may include vomiting, abdominal pain, deep gasping breathing, increased urination, weakness, confusion and occasionally loss of consciousness. A person’s breath may develop a specific “fruity” or acetone smell. The onset of symptoms is usually rapid. People without a previous diagnosis of diabetes may develop DKA as the first obvious symptom.

So yeah, I was going to be spending a few days in the hospital. One of the symptoms of DKA is severe dehydration—even for a less severe high blood sugar scenario⁶⁶ These happen to me a little more often than I should probably be letting them., drinking lots of water is usually a good idea. And I’d never had an IV or blood draw or anything else involving a needle going into your veins before. Dehydration tends to make veins substantially harder to get a needle into. And I was just all around not doing great.

It really sucked. Probably one of the most painful experiences of my life. For years, I was giving myself insulin shots (and finger pricks) like they were absolutely nothing, but really terrified of blood tests and even vaccines or other needles. It was kind of funny. I still don’t particularly like them, especially blood draws, but it's not a very big deal anymore.

They had to set up multiple IV lines on the first evening while I was still in the emergency room. A couple times they tried to put one in just didn’t work: they’d stick the needle in, try to wiggle it into the vein while I was in immense pain, and then eventually have to give up and pull it out. I think that happened at least twice before they managed to get in the two (iirc) IV lines I needed.

And then they’d draw my blood for blood tests, I think at least twice a day, often in the middle of the night. Occasionally a very nice nurse would try to get enough blood out of an already inserted IV tube instead of sticking another one in just for the blood draw, but this was a slow process that didn’t work very well when trying to fill a whole test tube.

ROT13 mildly gross medical details: Lbh pna’g, rknpgyl, tb hfr n gbvyrg juvyr ubbxrq hc gb n ohapu bs VI ghorf. Fb gur svefg avtug, juvyr V fgvyy ernyyl arrqrq gur syhvqf naq vafhyva naq fhpu, V arrqrq gb whfg yvxr, hevangr va n ernyyl njxjneq pnavfgre guvat juvyr fgnaqvat ng gur rqtr bs zl orq. (Cebonoyl gurl nyfb jnagrq gur hevar sbe grfgf.) Ng bar cbvag, V fgnegrq cvffvat jung fbeg bs ybbxrq yvxr oybbq! Cebonoyl vg jnfa’g yvxr, cher oybbq, ohg vg fher jnf qnex erq.

I think they made me stay in the hospital a few extra days while they tried to figure out what was up with that. I mostly spent the days laying in bed uncomfortably, watching YouTube and eating terrible hospital food, and eventually learning how to give myself insulin from a vial. But eventually they found one (1) case study in the literature where someone had a similar DKA symptom (or something like that, they didn’t go into much detail about it) and I was otherwise pretty much recovered. And I did rather want to be out of there. So they just sent me home with insulin and other diabetes supplies. And maybe some potassium pills, if I didn’t have the DKA low-potassium issue fixed by then.

The weekend after I got out of the hospital I had lasagna and cake for my fifteenth⁷⁷ Zero-indexed birthday. It went totally fine, even though that’s kind of a lot of carbs to have at once. I just had to inject an appropriate amount of insulin about it.