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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-
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my arm with vs without kt tape is crazy bc wdym i thought that was normal my whole life
I finally got my diagnosis of Elhers danlos!! Its been like... 4-6 years of trying desperately to get a doctor to look at me and diagnose me. In my twenties a physical therapist told me I had Hyper mobility, something no one else had ever mentioned. And since then I've tried to find a doctor to actually diagnose and treat me, but most take a look say they dont know and send me on my way.
But a friend with the same condition suggested I switch my PCP to a clinic they recommended and today was my second appointment. He did more tests and checks before letting me know he feels comfortable officially diagnosing me with Elhers danlos. I feel so validated and it feels like I'm dreaming I've known for a while I have this disability, but being able to say it's diagnosed feels so good like people can't deny my disability anymore.
My pain is real. I am not crazy, all the gaslighting if my pain being taken lightly was wrong and my pain is real. I'm so relieved to find a place that ACTUALLY cares. My new PCP is also going to run tests on my heart because of a very irregular beat thats been ignored for years aswell. So I feel im finally in good hands, and tentatively feeling hope 🩷 Im so thankful im so happy, he even said we can discuss autism assessments next time I see him because I asked if he knew anyone who did them and HE does them? I feel so lucky I'm just hoping insurance somehow will cover it which probably is a no, but I have to at least try.
Anyways I feel so happy to be diagnosed I feel very validated thank you for anyone who reads this I'm just so happy 🫶🏼
[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
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.
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Eds dislocations/subluxations discussed
Is there a way to keep my trachea in place?
Happy disability pride month to me, I passed out into a seizure and the fall knocked my shoulder out of place. The life of POTS and EDS
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
