fucking gay

You can read the whole bill here: https://documents.house.mo.gov/billtracking/bills241/hlrbillspdf/5874H.01I.pdf

i do not feel safe naming my condition publicly due to its rarity. as in, this is my most well-documented disability, meaning that it appears on all my medical paperwork and my disability paperwork. my employers all know about it, and how rare it is. my mom tells everyone who will listen about my condition. i've had to tell pretty much every medical professional i interact with all about it. for that reason, if i were to name it online, anyone who rode in a lyft with my mom, or any pharmacy tech who's ever processed even unrelated meds, or my irl former boss, would immediately know it was me. i don't have any privacy about my condition irl. i'm visibly disabled, and it is very hard for me to avoid the kinds of assumptions that people make about my body.

i have to be an ambassador for my condition to every doctor i meet. they look at my chart, and ask me what that name means. i have to explain what it is, how it works, what the impact is on my life, what causes it, and what the treatments are. this includes with specialists in the organ system it effects, because...

because there are no specialists in my condition! there is a specific research hospital that has treated some patients with my condition, but even the doctors who treated me there were actually specialists in a totally different disease! i was actually nearly turned away from their clinic because my tests were negative for their actual specialty, and my mom and i had to repeatedly explain that no we weren't there for that, we were there for one specific doctor that had done some research ten years ago on a condition that nobody else in the hospital had even heard of before. again, being an ambassador for my condition that i was hospitalized for, on the verge of dying from it

insurance. my condition does not have an insurance code. insurance codes are used to approve treatments for each disease. for example, if you have the code for iron deficiency anemia written in your chart, then you can get approved for iron infusions. but there isn't a code for my condition. so when i became iron deficient due to complications of my condition, they couldn't approve me for infusions until my iron deficiency became severe enough that it could be diagnosed as full blown anemia. they basically had to list one of my complications as its own condition in my chart, because at least that had an insurance code, to get me in to see any doctors at all.

medications. medications in the USA, where i live, are protected by patent and developed to be shared on the free market. that means that if you don't have enough "consumers" for your medication, there's no demand, and therefore no motive to sell it. when a medication was developed for my condition, that improved QOL and helped slow progression, it was never even submitted to the FDA, because there was no demand. this means that not only is this medication not listed as covered by literally any insurance company, but it is not produced commercially. i have to order a thirty day supply from a "compounding pharmacy" where they make the medication custom for each order, and then ship it to me every month. i have to pay out of pocket for it every single month.

being a specimen. frankly this part doesn't bother me, because if i can contribute to research, then hopefully other people won't have to suffer from it like i have, but part of my treatment has always been participation in research. i make living tissue donations, where whenever biopsies are taken to check progression/if my meds are working, i donate extra to be used for research purposes. when i die, i plan to donate my body to the specific research team that wrote the one paper on my condition that exists. but there's not much research on my condition at all. when i met with the research team, they gave me a ton of materials for the more common condition that i do not have. i'm worried that when my current doctors retire or move on, nobody will continue the research, and my condition will remain difficult to treat and mysterious to medicine.

i have a condition that i will never see in a positivity post. i have never met another person with my condition, and i don't ever expect to. there are no support groups for people with my condition, no discord servers, no facebook pages. but i'm not in this alone. there are lots of people who also have "case study level" illnesses (illnesses that aren't common enough to do larger scale research on). and hopefully with healthcare reform and disability activism, we can lift each other up.

But no one seems to make the connection that it's a time blindness thing. One of the symptoms of ADHD is not having a good and accurate sense of time. And not doing stuff prior to an event with a hard deadline is an obvious coping mechanism for that.

Can I go to the store? It's 10am and the appointment is at 3pm. How long does going to the store take? An hour? Three hours? Five hours? I DON'T KNOW!

I get anxious trying to do things before appointments because I'm aware that I don't know how long those things take, and that if I think I do, I may be very wrong. Too often I've been like "hey I can walk to the corner store and grab a drink, that'll take like 15 minutes!" and then an hour later I get back and whoops my rice has burnt.

Plus there's also the fact that ADHD people know that motivation and focus is a two-edged sword.

Like, let's say you decide to play a video game. You've got time, you can pause/save whenever, so this should be a perfect fit to make good use of your waiting-time. So you start playing and WHOOPS you get really focused for some reason today (because people with ADHD do not get to pick when their brain decides to focus) and the next time you look at the clock it's 2:49 and you haven't showered or dressed and the appointment is 30 minutes away. Fuck. (you could have set an alarm, but now you're asking people with the forgetting-things-and-time-ignoring condition to remember it set alarms)

And with motivation, it can be almost worse. Instead of playing a game, you so something useful or creative. You clean your room or fix your plumbing or write a story or draw a picture. And suddenly it's great. Your brain is firing on all cylinders. You've got all the motivation you can ask for, and you are FLYING. the ideas are brilliant, your hands are nimble, you're getting stuff done you've been putting off for weeks or months. And then the alarm goes off. Time to go to your appointment. Fuck.

You drive there, your brain still full of ideas and plans. But by the time you get back, the motivation is gone. You may still have the ideas but you don't have the drive to write them down. You can't force yourself to do it. Your sink is still in pieces. Your room is half-cleaned, and you have to shove all the sorted clothes into one big bin just so you have somewhere to sleep. You've left things half finished again, in a cycle that has been repeating your whole fucking life. It seems sometimes that nothing ever gets finished.

So next time you don't even start. There's not time. You've been burnt too many times. Why add another half-completed project to your pile of shame?

My point is that people seem to be going "lol I can't do anything all day if I have an appointment at 3pm" like this is a quirky "oh I'm so scatterbrained!" weirdness they alone have, and not a major complication of a disabling mental illness.

just to watch that all fall apart in the last year or so and especially the last two weeks

thick water is for disabled people who can’t swallow properly. stores usually have extremely limited supplies of it.