#eds problems

[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.

[bunniesbone]

Something strange I notice is that on my cheeks they are a little sunken?? It's not very noticeable. When I lift my arms into the air I can see my ribs. Collarbones are also very visible. And lastly I can see my hip bones.

All of this is happening even though I still have a lot of chub on my body (´；д；)

[devtheduck]

Day 1 of Using Crutches

Sooooo many Dude Bros™️ staring at me but not realizing I’m staring them down too

People actually moving to one side of the sidewalk! Like they’re supposed to! The amount of times I’ve rolled my ankle moving into the grass because they’re just plowing down the center like there’s nobody else around is incredible

A weird amount of drivers smiling at me while stopping to allow me to cross the street? Like thank you for stopping like you’re legally supposed to but the smile feels too nice. I will smile back because that’s what my Tism trained me to do but you don’t have to smile at me it’s weird

All of the important people that I informed of this change did Not respond to my email, but rather spoke to me in person by saying “sorry I didn’t respond to your email”. Which is fine and they’ve all been very kind but you don’t have to say sorry I wasn’t expecting a response though I do appreciate it

Shout out to my friend Jared who was Not informed of this change and so he asked “are you okay?” Then just had a normal conversation after I said yeah. No need for further questions I appreciate it you’re a real one

[elonmuskratsbussy]

FELLOW CHRONICALLY ILL FOLX!!!!

Do you struggle to keep track of your meds, symptoms, doctors, etc??? Use this!!!! It's completely free and I made the template myself!!!

EDIT: The link works now! Notion has finally made the template official!

[clatterbane]

I really couldn't say what I might have done to get the muscles at the top of one of my shoulder blades hurting whenever it moves tonight. Unless it was sitting wrong.

[kxllyrslfff]

guys is there a way that you can stop your period? It’s 2am and I got bl00d on my WHITE sheets >:( a boy can’t live in these conditions! Idc how harmful it is js help meeeee

If you’ve lost your period due to Ana how much weight did you lose??

[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!

[bunniesbone]

OMG JUST WEIGHED MYSELF AND I'M 47.6KGS!!!!!!!!!!!!!! (104.9 LBS) I'M SO HAPPY THIS IS THE LIGHTEST I BEEN IN YEARS

(((o(*ﾟ▽ﾟ*)o)))

I'M ALSO 47 HOURS INTO MY 72 HOUR FAST YAYYYYYY I'M SO HAPPY AND MOTIVATED

not mine DM for removal!!!! 🍓

[violet-phoenix-nebula]

Hey everyone! So I'm going to do a few polls about Ehlers-Danlos Syndrome, and I'm gonna try to link them together somehow so people can get through them easily.

Poll 2/4

Poll 1

Poll 3

Poll 4

Please reblog! Thanks!

[ebonyheartnet]

Podiatrist, looking at my x-rays: You have heel spurs.

Me: Well that explains some things.

Podiatrist: Does it?

Podiatrist: You have EDS, and you literally said in your chart that you have, “the structural integrity of a jellyfish.” Why the fuck do you have heel spurs???

Me: Ever heard of a stiff zebra?

Podiatrist: This is our first visit, and I’m already learning so much. What the hell is a stiff zebra?

Me: So some folks with EDS will generate a bunch of scar tissue to splint our joints. It’s ultimately counterproductive, but like, try telling my body that.

Podiatrist: Interesting. In school, we just learned that you all tend to be super loose, falling all over the place because you’re put together with toothpicks and hope.

Me: Oh we are. Stiff zebras just have 20 rolls of duct tape wrapped around their joints.

Podiatrist: …

Me: Uh huh.

[this-is-me19]

EDS-Zebra Problems

o| Gravity is working against me/And gravity wants to bring me down |o

~“Gravity” by John Mayer

[jamesbranwen]

I feel like only one thing should be allowed to hurt at a time

[pariahfox]

Messing around with some coding would probably be way less tedious and frustrating if (a) I were more used to where basically All The Symbols are on the Nordic keyboard layout"*, and (b) if both my hands were working properly.

As it is, that damned nerve pinch** in the left arm has me down to awkward three-finger typing at best with that hand. An awful lot of glance-and-peck going on around here, between those two factors. 🙃 It's probably not doing the hand/arm much further good, either.

For years before, I was actually switching over to US layout and just working from memory whenever I needed to use one the Household Swede's keyboards that he'd dragged along with him. That seemed more than a little ridiculous once I moved to where that's the standard layout and ended up with one of my very own for daily use, though.

At least the keyboard layout issue should hopefully improve with time and practice, though. The nerve pinch, not so much. I had better try more DIY massage therapy.

* See also: "How do I type the pipe symbol...?"--but even in less egregious cases, very few of the special characters are where 30+ years of muscle memory are telling you they should be.

** Unrelated to typing, darkly hilariously enough--but, mainly a consequence of manual wheelchair use with fucked-up bendy joints, some angry overused muscles, and a particularly dodgy shoulder to begin with.

[clatterbane]

I was half-joking earlier that it felt like somebody had decided to administer a spot of Hell's Angels first aid while I was knocked out earlier. But, locally* that would apparently be as likely to involve rocket launchers as "just" the good old kick in the ribs while you're down. No shitting.

Seriously though, I have no idea why it has felt like that after both times they've knocked me out to work on my throat. It does not feel like the usual sprung ribs from asthma coughing (though I thought of that possibility pretty quickly), because I have way too much experience with bendy-person cough sprung ribs. It's feeling like I have some kind of pulled muscles right where the lower ribs attach to my waist/hips on the side and back. The left side is worse, and spasms like hell yanking on the ribs when I touch it. Absolutely no clue how that could have happened from anything I did today (or the last time), to try and avoid repeating whatever did that.

Ah well, hopefully it will settle down some with a sleep reset again. And I really do occasionally miss being able to get weak codeine OTC. Because Tylenol is really not helping to shut that up.

* Though, maybe that's less likely in Lund where that hospital is. Because I don't recall seeing anything about anybody getting their shit blown up back in the day maybe 30 minutes' drive away in Lund. Very much unlike Malmö.