#elhers danlos

[clown-bitchh]

i have an appointment ive been waiting for for 4 years with a geneticist for my heds on my bday on the 16th and im terrified. im in so much pain and im just scared ill have waited all thos years for nothing. ive heard good things about her tho-

[sylasons]

my arm with vs without kt tape is crazy bc wdym i thought that was normal my whole life

[snapcracklepop-myjoints]

[Image Description: a grainy photo of a white man with short hair smiling at the camera and making finger guns. In intentionally difficult to read word art, it says “I’m built different. Incorrectly”. My url is at the bottom in small black font. /end Image Description]

Made an Ehlers Danlos meme pls laugh

[wrenimod]

i think one of the things i hate the most about being disabled and having said disability be heds is that i can't talk to my primary about any referrals or pain management at all. i instead have to suffer by myself as i get worse and worse daily because i can't make the hour+ trip at ~5am regularly to see my specialist.

my mental and physical health has declined pretty rapidly since starting work and all i can do about it is complain and cry and miss when i was actually able to do things instead of staying glued to the couch every day because i'm in too much agony to have a life outside of work.

and ssi denied me because i have savings. and another benefit type denied me for whatever reason. probably because i claimed i couldn't work without even trying. and now that i am working i don't even have the energy to try figuring out anything else. i can't even make important phone calls or anything anymore. i just want to sleep and curse the body i'm stuck in.

maybe if i was visibly disabled to the government things would be different. but unfortunately im not willing to harm myself in such a way to make that happen.

[oliver-the-raggedy-doctor]

Eds dislocations/subluxations discussed

Is there a way to keep my trachea in place?

My trachea (I think, it's in my throat around the middle between my chin and chest), keeps subluxating. occasionally it'll be bigger ones, but usually it's just small ones throughout the day. Like not even a centimeter out of place. But it's really annoying and I think it could damage something if it keeps doing that. It doesn't hurt though. It's also almost always to the left side of that changes anything.

Like would wearing KT tape help? Is there some kind of weird ass brace for it?

[oliver-the-raggedy-doctor]

Do you ever fall asleep in an awkward position and wake up feeling like your joints are slightly out of place?

Cause this happens to me all the time. If I rest my head wrong for too long my jaw feels out of place, if I put my arms on my desk and fall asleep like that my shoulder feels out of place and if I'm cross legged my hip feels out of place too