A peculiar comorbidity.

okay, so over the past few months, i've been dealing with this relatively new diagnosis of what the doctors think is type 1 diabetes, but what I hope is just some sort of weird insulin processing disorder (I had the A1C of a type 2 diabetic; the antibody reaction and the DKA admission of a type 1 diabetic; the C-peptide of a type 2 diabetic; the fat and protein bump of a nondiabetic) that might be LADA, might just be my body's way of doing type 1, might be something entirely new.

either way, it's a pain in the ass not just in the expected ways (my grandparents refuse to recognize that my medical costs have gone up exponentially and think that the insurance company just automatically covers insulin and that it's the fault of the CVS for charging me $120 for 90 days of pen needles and $150 for insulin without coupon; they're part of that "fend for yourself" crowd; I've run head-first into how absolutely fucked up and monstrous the American healthcare system is, especially with the fact that no person on the executive branch has proposed a total end of the insulin pricing wars; I've run into the health food and wellness industry going full steam ahead, fucking up the minds of diabetics into thinking they need to chug laxative bread and laxative soda just to keep their blood sugar down; I've run into the FDA dragging their feet for approving life-altering treatments for people like me, like way-faster insulins that can close the loop for artificial pancreas systems AND Tzield - there's no reason those should take 10-30 years to make it to market, especially if all the next-gen ultra-rapid-acting insulins are just Novolog/Humalog with added shit), but it's a pain in the ass in ways nobody even really considers.

I am autistic. I was autistic way before I was diabetic. I've been autistic all my life. that means I have a set variety of safe foods. a lot of weirdly-textured foods are what I like to call "danger foods," stuff like beans, most legumes, cheese by itself, most game meat, soup/hot liquid, etc. these foods scare me. and a lot of my safe foods are more snack food-based stuff - stuff like rice cakes, peanut butter sandwiches, Cheez-Its (I don't think that's real cheese in the Cheez-It), even the occasional dessert. stuff I can snack on easily. so imagine having a food-processing disorder that requires me to inject outside insulin every time I want to eat something that's not a free food. i'm not just experiencing the traditional onset of diabetes burnout and diabetes distress - no, i'm experiencing something entirely new, something that Nick Jonas and Priyanka Chopra (yes, I know Beyond Type 1 scours Tumblr and Social Media for posts - they are ultimately a content aggregator since they foolishly push keto diets to T!D patients, which most government and medical resources refuse to push due to the risk of developing euglycemic ketoacidosis) have never considered in their life. something that friends of mine who are on-the-spectrum and diabetic (they were diagnosed really early on) have never even considered.

i'm experiencing a diabetes-associated autistic meltdown. and it's not pretty. it's made me develop a really bad relationship with food, a massive fear of it. it makes me doomscroll on Beyond Type 1, on Twitter, on Reddit, just to find some glimmer of hope. It makes me panic-message my endocrinologist if I stay elevated at 220 for like two hours - I was between 200-270 mg/dL when I developed ketoacidosis symptoms, I can feel my heart pound in my chest at 250 mg/dL, I develop ketones within an hour of staying out of range. and yet her biggest concern is the fact that I kinda have to bend over backwards to wrap my life around this autoimmune disorder, to get really tight control and stay out of highs (but ultimately be more susceptible to lows - which are not good at all, since I am mostly hypoglycemic unaware) in fear that I will have to be charged to the hospital later that night. my body works really fucking weird - like, Nick Jonas had to have a blood sugar of 700 mg/dL just to get admitted for DKA in the middle of recording It's About Time. most T1D diagnosis stories share the same thing. the closest diagnosis story I can compare mine to is maybe a few LADA stories - but LADA cases always start out mimicking type 2 diabetes, which I could've been well in danger of developing because of an astoundingly bad fast-food-heavy diet (three times a day when I was working at the bookstore, IIRC - binge-eating during the bookstore closure). it takes YEARS for a LADA case to really show its true colors. mine took two months. I'm gonna try to get my C-peptides tested again - and if they're still 0.9 (just slightly under range) after three months of a raging autoantibody reaction, then I know there's more to me than "body attacks body." i'm hoping they are. that means I could benefit from Tzield - if they ever approve it for people like me.

every few weeks or so I have diabetes burnout so horrible that it intermingles with the meltdown and, combined with whether or not the sun's outside, puts me in a really bad mental spot. and you wanna know how bad it gets? you really want to know? well, let me put it like this, to quote Kid Cudi's weird grunge album: "I hate the gun, but I love the sun." From "Confused!" - from Kid Cudi, whose big shtick is that he's REALLY honest about his struggles with suicidal ideation. that specific line is about how he really does not want to kill himself, but he DESPERATELY wants peace of mind. usually, when it comes to suicide, nobody talks about it or, if you do, people just lock you up and throw away the key. i have worsening suicidal ideation because of this comorbidity. Nick Jonas thinks the worst he has to deal with is that he can't eat pizza super-libertine anymore or that he might get shaky enough to chug an apple juice in the middle of singing "Waffle House" during a show? imagine being afraid of all your safe foods because if you take too little insulin, you're in the hospital for DKA later that day because elevated sugars hit you way harder than everybody else, and your entire medical team (but specifically your educator and endo) will tell you "don't eat that anymore, don't eat that anymore" because they don't get the fucking memo despite you not making eye contact with them at all, despite having the monotone voice, despite occasionally stimming since I can't keep my guard up at all times - they think that as long you don't look like the Rain Man, counting cards in a suit from Armani and underwear from K-Mart, you're not autistic.

do I HAVE to whip out my extensive diagnosis and observation papers from 1994 to 2005 just for them to get the idea of why I'm desperate for the long game to be a relatively short game? I get that this shit's gonna last a while, but when I say I can't live the rest of my life with this, I really can't. the average life expectancy of an autistic person is, what, 51? well, you just cut my life expectancy down to, maybe, 45 since I am way more prone to distress and burnout. all the type 1 resources, both by type 1s and medical organizations, have been tailored for neurotypical type 1s or type 1s with way lighter neurodivergences, for neurodivergent kids who've always had diabetes so the cormorbidity isn't bad (so they can still freely determine their safe foods). this is why I want to get on Tzield now - I want to prove that the PROTECT Study is worth its weight in gold. I want more clinicals near me to widen their eligibility for me - to not have the cutoff age be 30. I want Novo Nordisk and Sanofi and Eli Lilly to end the price-gouging of insulin either through extreme government intervention or by doing the thing Frederick Banting told them to do in the first place.

And to close this off, I want healthcare providers to do a few things. 

There are going to be a lot more cases like me. There are people out there who are fucking struggling. In fact, I'm sure most of the diabetes-related suicides out there were from late-in-life diabetics with an autism comorbidity. this shit isn't easy to deal with, especially when your comforts are now lethal. and it's not like you can just say "well, don't do it." do you have any idea how super-ingrained these comforts, these stims, these safe foods are to an autistic person? they run deep. and they run deep even when you're a kid. it's the main reason why applied behavior analysis is straight-up considered psychological torture in the autistic community - people suggest that just to rip an autistic person away from bad actions, only to realize way too late they're making them miserable. and right now, I'm going through one hell of an ABA session, only that it's my fucking pancreas that's playing pretend-psychiatrist. combine that with the "gotta keep you alive no matter what" mindset of every type 1 resource, endocrinologists, diabetes educators, and PCPs and you have yourself a system that is designed to kill neurodivergent late-in-life diabetics in a short amount of time. in a way, it's genocide. you're getting rid of one group of people in order to not have to deal with them down the line. in another way, it's a form of eugenics since it's designed to weed out the undesirables from the health pool, so they can take their time delaying closed artificial pancreas loops, fool-proof insertion kits that can't be ripped out during sleep or strenuous activity, 10/20-minute-peak insulins with two-hour total lifespan, seven-day patch pumps, stuff that doesn't exactly benefit a neurotypical diabetic at the moment since they're easily adaptable (plus there's this dogged "can't teach an old dog new tricks" mindset you see a lot in diabetic circles) but benefits a neurodivergent diabetic who has way more to worry about than high and low blood sugars. the healthcare industry doesn't give a shit about me. in fact, i'm pretty sure it wants me to die either by my own hand or by theirs.

but here I am, asshole. and here's my final demand: 

 I want Tzield to be approved for honeymooning patients NOW.

I want late-in-life diabetics (priority going to those with neurodivergences) to automatically be added to pancreas and islet cell transplant lists upon diagnosis. you will see significantly less suicides, less deaths, less eugenics, less murder, less mistakes, less meltdowns, less burnout - if you let them on those lists and not just relegated those to life-long diabetics whose organs are starting to crap out on them.

I want all next-gen ultra-rapid-acting insulins to be released now. again, they're just Humalog with more shit.

I want insulin to be totally free. Forever.

I want, upon diagnosis, all diabetics to receive lifelong healthcare from the government, even after remission and surgical intervention. In fact, I want all healthcare to be free.

I want all clinicals for stem-cell effective-cures to widen their criteria to include cases like mine that are way more susceptible to early-onset DKA and euglycemic DKA. those are as lethal as severe hypoglycemic events, but you just wanna blame DKA on not having enough insulin in your system. that way, you can see if stuff like VX-880 and VX-264 have an Awakenings effect (works for a bit before it stops working) or if manages to stick around for longer. I want all clinicals for immunotherapies to have their ages expanded to 35.

And I want Beyond Type 1 to publish all three of my posts - uncensored - on their website if they ever run into it. No edits save for some basic proofreading.

Anything else is genocide.