illin and chillin

I've been wanting to make a graph like this for awhile, about the overlap between these three disorders. Tagging @auschizm because it's highly related to that blog :D

Text transcribed below the cut because it's long!

The autoimmune disease, it seemed, was a specific biological cause — and potential treatment target — for the neuropsychiatric problems April faced. (Whether her earlier trauma had triggered the disease or was unrelated to her condition wasn’t clear.)

The diagnosis made Markx wonder how many other patients like April had been missed and written off as untreatable.

“We don’t know how many of these people are out there,” Markx said. “But we have one person sitting in front of us, and we have to help her.”

The medical team set to work counteracting April’s rampaging immune system and started April on an intensive immunotherapy treatment for neuropsychiatric lupus. Every month for six months, April would receive short, but powerful “pulses” of intravenous steroids for five days, plus a single dose of cyclophosphamide, a heavy-duty immunosuppressive drug typically used in chemotherapy and borrowed from the field of oncology. She was also treated with rituximab, a drug initially developed for lymphoma.

The regimen is grueling, requiring a month-long break between each of the six rounds to allow the immune system to recover. But April started showing signs of improvementalmost immediately.

As part of a standard cognitive test known as the Montreal Cognitive Assessment (MoCA), she was asked to draw a clock — a common way to assess cognitive impairment. Before the treatment, she tested at the level of a dementia patient, drawing indecipherable scribbles.

But within the first two rounds of treatment, she was able to draw half a clock — as if one half of her brain was coming back online, Markx said.

Following the third round of treatment a month later, the clock looked almost perfect.

Drawing a clock is a common way to assess cognitive impairment. These clocks, drawn by April, show how significantly the treatment regimen was helping her. (Courtesy of Sander Markx) Despite this improvement, her psychosis remained. As a result, some members of the team wanted to transfer April back to Pilgrim Psychiatric Center, Markx said. At the time, Markx had to travel home to the Netherlands, and feared that in his absence, April would be returned to Pilgrim.

On the day Markx was scheduled to fly out, he entered the hospital one last time to check on his patient, who he typically found sitting in the dining room in her catatonic state.

But when Markx walked in, April didn’t seem to be there. Instead, he saw another woman sitting in the room.

“It didn’t look like the person I had known for 20 years and had seen so impaired,” Markx said. “And then I look a little closer, and I’m like, ‘Holy s---. It’s her.’”

It was as if April had awakened after more than 20 years.

some people use “neurodivergent” to exclusively mean developmental and learning disorders, like autism, adhd, dyspraxia, dyslexia, etc. in this case it makes more sense to use a binary framework… there are people with developmental disorders that affect them in particular ways and people without, and accessibility can mean broadly similar things.

but other people use “neurodivergent” to mean basically anything in the DSM—autism, yes, but also OCD, dementia, depression, schizophrenia, bipolar, PTSD, even addiction—you name it! in this sense it’s useful to the extent of solidarity, mad rights, and addressing ableism and psychiatric abuse. what it is not useful for is identifying a binary of guys who are like this and guys who are like that; all we have in common is failure. and anyone can fail (or be failed), at any time, regardless of communication style or eye contact. this failure is racialized, it’s gendered, it’s class-stratified, it’s age-bound, it’s politicized.

!!!

pain medication doesnt stop people with chronic pain stop being in pain (specifically in the long term), it just makes pain management easier

fidget & stim toys and fidget & stim jewelry dont stop people with anxiety from having anxiety, adhd-ers from having fucked up exectutive function, and autistics not being able to automatically regulate emotions and sensory responses, it just makes dealing with them all easier

various adhd medications doesnt make people not have adhd anymore, it just makes it easier to regulate their executive function.

anxiety medication doesnt get rid of anxiety, it just makes it easier to deal with.

white canes and sight specific service animals dont stop blind people and people with sight impairments from being blind or having sight impairments, it just makes living with them easier.

trauma and emotional support specific service animals dont stop people from having trauma and emotional issues, it just makes dealing with them easier

anti-depressants dont stop people with clinical depression from being depressed, they just make it easier to deal with by stabilizing mood.

immune suppressants dont stop people with any autoimmune condition(s) (such as crohn's, psoriasis or psoratic arthritis, rhumitiod arthritis, myasthenia gravis, fibromyalgia, ect.) being affected in any way affected by their autoimmune condition(s), they just make living with the condition(s) easier.

when i’m at work, people get mad at me for not hearing them the first few times. like, openly agitated. they’ll assume that i’m stupid, or rude, or careless. sometimes they will indirectly chastise me for ‘not paying attention.’ at which point i say “i’m sorry, i’m hard of hearing. you were on my right side and i’m severely deaf in that ear,” and they go “oh my god i’m so sorry i didn’t know.”

yeah. you didn’t, did you? the only available information you had about me was… that i didn’t hear you say something. the thing you hated enough to comment on was that i couldn’t hear you. you don’t get to backpedal once you find out that i have can’t-hear-well disease. i shouldn’t need to present a diagnosis to expect decency from you

Large and Random (?) Drug Shortages! There is apparently an FDA site you can search:

Been hearing about this a little bit for a few weeks, has previously only heard of it related to ADHD and Pain meds. Apparently it's more than that?

When you search for yours, check the specifics. I checked one of mine and it says discontinued but it's at a lower dose and seems to only be from one pharmaceutical company. I haven't heard anything about it being discontinued as a whole and I think I would have...

When I tried to talk about these things with other people, they always rationalized it away. (I told my dad once that my caseworker was reading my e-mails as I wrote them, demonstrating extreme disrespect for my privacy, and he said, “Well, she’s probably making sure you don’t use the internet to goof off.” I was 22 years old.)

 People tend to mock the idea that telling an adult when to go to bed, when to eat, etc., is a human rights violation, even though they would find it outrageous and absurd if anyone came into their lives to do the same thing to them.