#eds problems

[darklydeliciousdesires]

Guys, I haven’t forgotten about your requests. I tried starting on them today, but I’m going through a flare up with my EDS and the fatigue and aches have set in. It zaps my energy and concentration, so I’ll try again once I’m feeling better 🤍

[chronicallycouchbound]

Rating names/terms for Ehlers Danlos Syndrome:

Ehlers-Danlos Syndrome: 10/10 Lawful neutral, it’s the official terminology, lets you know what’s up

EDS (in all caps): 9/10 Sometimes confused with other unrelated conditions and acronyms but usually works

EDs (‘S’ is lowercase): 2/10 Usually refers to erectile dysfunction or eating disorders, which causes a lot of confusion.

Ehlers Danlos: 8/10. Good shorthand while still knowing what’s going on.

Earers Daniel’s Syndrome: 1/10. I have only heard this once, from an ER doctor. He said it to me as he turned away from his screen (which was pulled up to the Web MD page for EDS) and proceeded to mansplain my condition to me inaccurately. At least he tried.

“Eyers Dan—“ *waves hand around*: -5/10 I’ve heard this one a lot from medical professionals. I just know I’m about to be malpracticed and am already planning the quickest way out of the situation.

Zebras: 6/10 I like the imagery, I like mascots, I like the story (when doctors are in med school they’re told “if you hear hoofbeats, think horses, not zebras” but them zebras are missed) however, I have two criticisms: a) more rare conditions are out there, and zebras technically refers to any rare diseases, not just EDS b) I feel sad when I think about how it basically calls EDS the “I was medically malpracticed disease”

EDSers: 8/10 a cute lil shorthand for “people with EDS”. Easier to explain than the zebras thing

hEDS/vEDS/cEDS/including subtypes: 7/10 I like the idea of being able to know what your subtype is and find people in your sub community, HOWEVER my only concern is that it can feel (and used for) invalidating people without a genetically confirmed subtype because of inaccessibility. I haven’t had gene testing because I can’t afford it— but I have clinically diagnosed EDS, which has been confirmed at multiple hospitals by multiple specialists. I score a 9/9 on the Brighton, meet all major criteria, and meet almost every other minor criteria for EDS on top of that. But I don’t know my subtype yet. I don’t hate/dislike people who use this term and I don’t discourage it, but I do encourage mindfulness about genetic testing accessibility and privilege of access.

Bendy disease: 10/10 a silly goofy joke I say with friends “I cannot walk up stairs on account of my loosey goosey bendy disease” which is always funny to me. Even with my serious things like “my life threatening cardiac conditions are rapidly progressing” you add “on account of my bendy disease” and bam theres my coping skill.

Ehlers: 3/10 a step in the right direction, but it sounds like “yellers” and dismisses half of the team that described the condition

“Double jointed”: 1/10 I was told my whole life until I was 18 that I was just “double jointed” for starters, it’s medically inaccurate. You’re hyper extending, subluxing, or even dislocating joints whenever you’re “double jointed” in a joint. There is not two joints there (unless you’ve had x rays and for some reason genuinely do have two joints in that spot). I honestly hate this term and it’s incredibly dismissive of the pain that happens with EDS while also making it seem like a super power that we’re encouraged to do

Contortionist: 1/10 [NOTE!!! some contortionists DO NOT have EDS and can just bend like that. Some have benign joint hypermobility. But many contortionists do have EDS.] In the context of people with EDS, I hate this term. It’s often the first thing people jump to when I explain my condition. They see my crippled ass in my wheelchair/powerchair or limping around with my cane/crutches/rollator, usually in multiple braces/supports (and thats just external noticeable-to-everyone things, let alone if you hear any aspects of my daily life) and their first thought is: “wow!! So you can entertain me like it’s a freak show!” And not “holy shit dozens of dislocations per day and countless subluxations per day must be excruciating”. I did contortions when I was younger to get praise and due to peer pressure. Fuck that noise I will not be your ugly law era freak show creepy cripple p0rn. Fuck everything to do with that actually.

[pomegranategolem]

i have a humble request for my shoulders specifically.

could you stop dislocatign for ONE SCOND>??????

[clatterbane]

Yeah, l really am going to have to find a dentist.

I've got one obvious (thankfully not so visible) problem in a front tooth which doesn't hurt yet, and I'd really rather keep it that way--and with any luck keep the tooth. The more pressing issue right now, though, is this toothache in a molar that keeps coming back more and more often and giving me trouble eating on the side that has all the molars still.

Guess what's hurting tonight, yeah. 🙄

I would go for one of the closest dental offices. There are a couple with decent reviews attached to the shopping center near us. But, I am pretty sure that I do need some work that requires sedation by now, if I am actually going to force myself into it. Other people's numbing is unfortunately my IV sedation, since locals just don't work and I am frankly pretty traumatized after growing up like that with lousy celiac enamel.

The closest place that I know of which thankfully does offer sedation for "anxious patients" is downtown near the central station. Seems like I should probably just go there straight away if whatever they're going to need do to fix it will require doping me up to tolerate the work, but yeah it's been easier to put off than if it were just over within "strolling" distance.

The mobility problems and need to ask for help from Mr. "Hope a cracked tooth will magically heal itself" don't really help. I don't know that numbing works any better on him either, since he's also bendy as hell with the previously big red beard.

I'm no doubt working this up into a bigger deal than it needs to be, but jfc there is NOT a lot of good history there. And I am not imagining any of it.

This tooth really is getting obnoxious, though, and I need to get something done about it. That was enough of a hassle where I did speak the language as fluently as my autistic ass is ever going to.

[joistired]

i’m j ranting so no one has to actually read this

but i’m SO. FUCKING. TIRED. of being SO. FUCKING. TIRED. i only have 3 classes rn and there all in the same building and one of my classes is on the second floor and i take the stairs because i don’t want to take the elevator away from anyone who actually needs it but walking from a parking lot almost a block away then doing stairs first thing in the morning is NOT FOR ME. i don’t know what to do. do i need a walker?? a cane??? can i use a walker or a cane if i just get really tired really easily? like if my body is over exerted at all i literally need a nap. i literally go to my car(that’s parked 86,000,000 miles away) to close my eyes in between classes. i just don’t want to feel like i’m on the verge of falling asleep constantly but i can never actually fall asleep!!! it’s a vicious cycle

also i called myself disabled for the first time the other day and i felt guilty?? i have a lot of internalized ableism i need to work through. j bc i don’t have a diagnosis doesn’t mean i’m not FUCKED THE FUCK UP

ignore all of this idk what i’m even saying it hurts to type and be awake rn

[enjolrashisace]

my platonic girlfriend to our cat: you can't lay normal can you

Me: I mean he's got it from me

Her: he's a cat

Me: he's my child

Her: he's a cat. They're supposed to be liquid

Me: so I'm a cat?

Her: he's a cat, you have a connective tissue disorder

[lordystrange]

I’m done with EDS can somebody take this away from me

[melodymorningdew]

Yo! Calling all disabled furries (18+) I'm opening up a sfw adult furry Discord server for those with disabilities of any kind where we can share and encourage and educate each other as well as engage in our darker senses of humor. I know there aren't a lot of disability/furry safe spaces so pls reach out if you would like to join.

You will be required to prove you are an adult by sending me or a moderator a pic of your government ID with all sensitive info covered up except your birthday. In the same picture we need a piece of paper with your username on it. We do not use or keep this information for anything other than verifying you are an adult. It's an adult server bc I want ppl to speak freely about tough subjects.

You do NOT have to be a furry to get in, you just have to be supportive and understanding of it.

You do NOT have to have an official diagnosis to be disabled or to be in the server.

If you are cool with those things hmu and we'll get you in!