Wheelchair Users Deserve A Minimum Of Three Wheelchairs To Meet Different Needs. Like, Bare Minimum Of

why isn't there much info about coathanger pain with POTS?? or at least why is this not more common knowledge? i don't think i've ever seen anyone talking about this. every time i've asked about it (+other POTS symptoms it comes with in my case) in chronic illness spaces people have suggested everything from fibro, MCAS, a CFS leak, a herniated disc, CCI, etc. but nobody ever said "coathanger pain."

but dysautonomia international posted a silly little graphic on their instagram and now i have my answers to why i was having a ton of symptoms that did suggest a herniated disc but there were no signs of disc herniation upon getting an MRI and for some reason it was triggered by working morning shift/having to be upright for a long time in the mornings. i would get excruciating, searing pain that feels pike a knife has been shoved into the base of my neck and the whole of my upper back would have this icy burning sensation. accompanied by me losing the ability to think straight, losing my coordination, and slurring my speech. i left work crying one morning because of how much pain i was in before i eventually came to the conclusion i couldn't do morning shifts.

that's coathanger pain. my spine is okay (i think...for now, anyway.) according to The Stuff they don't know what causes coathanger pain necessarily but they theorize it has to do with reduced blood flow to those areas of the body (which would track since POTS tends to involve blood pooling in the extremities and such.) it's also not exclusive to POTS and is associated with dysautonomia or orthostatic intolerance in general i think.

One example of the power of obtaining the autonomic history is the Coat Hanger Phenomenon. In people who have neurogenic orthostatic hypotension or orthostatic intolerance, they can complain of pain, or like a charley horse kind of sensation, in the back of the neck and shoulder areas in the distribution that’s like a coat hanger. And it goes away when the person is lying down. That’s an important symptom. And the way I explain it is that the muscles that control your head are tonically active, otherwise your head be falling down all the time. Tonically active. That means they’re using up oxygenated blood all the time. Well suppose you’re in a critical situation where there’s a drop in blood flow at the delivery of oxygenated blood to the head. In that situation these muscles are not getting enough oxygenated blood. They’re tonically active, so they’re producing lactic acid and you get a charley horse, just like you’d have a cramp anywhere else. It’s a skeletal muscle thing. So, I think when somebody complains of Coat Hanger Phenomenon, that’s a very important sign or symptom. And that is not invented. That’s a real phenomenon. It points to ischemia to the skeletal muscle holding your head up.

(Dr. Goldstein, The Dysautonomia Project)

worsening cognitive dysfunction, slurred speech, and worsening coordination because blood's not getting to my brain. bordering on emergency-room-level pain in my upper back and neck because not enough blood is getting to those parts of my body. got it.

anyway, i legit have NEVER seen this discussed until recently and i thought i should share.

Housing is a privilege.

“Fewer than 5 percent of units have the features needed to accommodate a person with moderate mobility difficulties. The percentage of wheelchair-accessible units is even smaller; less than 1 percent of all units are equipped with features that would allow a wheelchair user to live independently.”

Marriage is a privilege.

“The [SSI] monthly maximum Federal amounts for 2023 are $914 for an eligible individual, $1,371 for an eligible individual with an eligible spouse.”

Minimum wage is a privilege.

“Section 14(c) of the Fair Labor Standards Act authorizes employers, after receiving a certificate from the Wage and Hour Division, to pay special minimum wages — wages less than the Federal minimum wage — to workers who have disabilities for the work being performed.”

We still need to fight for accessibility and equity for all disabled people.

Despite the ADA, equity is still out of reach.

I think wed all benefit if everyone on this website learned that sex work isn’t just part of a feminist issue, it’s part of a modern cultural erasure of sex and pleasure and a class antagonism that has been fostered since the advent of capitalism, and more importantly: I like my fucking job

apparently people are now purchasing thick water to make slimes with because of a trend on tiktok

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

please don’t buy thick water for fun or to make slime with. it’s literally the only way some disabled people can drink anything. It’s not a fucking toy

People love to talk about whether or not disabled people can work

but if you can work just fine and your disability is destroying your ability to have a life outside of work (because work takes all your energy and more)

Dead silence. Nobody cares.

FYI to sick or disabled folks and those who assist or care for them:  Simplicity patterns has a new line of adaptive sewing patterns.  Designs include tops with port access, clothing with velcro closures, bags and cushions for mobility aids, bibs, chemo hats, and more.

I’m excited about these because they are the first patterns of this kind I’ve seen anywhere.  And Simplicity patterns are great for beginning sewists, with very clear step by step instructions and illustrations.

Patterns can be purchased here:  https://simplicity.com/simplicity/adaptive/

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this is gonna be a really cool frame to apply to anyone with any mental illness stiffer than light social anxiety. can't wait to be berated for having an autistic meltdown and not taking personal responsibility for how much of a fucking bummer it is for everyone around me lmfao