Ehlers Danlos Zebra - Tumblr Posts
Any tips for getting an Ehlers Danlos Syndrome diagnosis??? Several of my docs have suggested that I have it but no one has actually done any tests pls help y’all. I’m sick of asking and getting nowhere
I have a drs appointment on Tuesday to hopefully get evaluated for hEDS yay. I Hope i can get a preliminary diagnosis from her i stg. It would explain so much and then maybe just maybe I’ll be taken more seriously by other docs. Like seriously it would explain SO MANY of my issues like nearly all of them I stg
*lays down and back hurts*
*stands up and knees and ankles hurt*
*sit down and hips hurt*
yall. I just woke up. It is 3:07 am. Why did I wake up you ask?
because my dumb fucking body hurts so much and I can’t do anything about it. I’m gonna go take a hot shower and see if that helps
Dance team tryouts are coming up and I really want to join but I can’t. Ehlers-Danlos is ruining my high school experience rn
Two years ago I was a ballerina. Classes two-three times a week. I loved it. then I had to quit because I developed very painful bunions that were only described as moderate by medical staff. Fast forward to today, where I can’t even do simple things like walking or bike rides without being completely out of commission the next day. I’ve missed so much school because of my disability. I have no mobility aides. Oh yeah, and my little sister resents the fact that it gets me attention from our mom. Yay.
So I’m reading fourth wing and I just. The main character is just so me, like she talks about how she’s more fragile and breakable than other people DUE TO HER LIGAMENTS AND MUSCLES NOT HOLDING HER JOINTS IN PLACE. IM A GIRL WITH EDS, THE BENDY BENDY OUCH CHRONIC ILLNESS. I LEGIT STARTED CRYING BECAUSE FINALLY SOME REPRESENTATION IN MODERN LITERATURE!!
So the wheelchair for the pride parade did not stop the flare from getting worse. It hurts so bad I just want someone to put me out of my misery
couldn’t sleep last night because my bones felt like the noise when you smash random keys on an organ at the same time
GUYS MY WHEELCHAIR COMES IN TWO DAYS!!!
having some thoughts about my wheelchair and how that’s going to change things. I’m worried it’ll be harder to find people who want to date me (even though I know that I’m not lesser for being disabled). I’m worried about all the questions I’m going to get because people have seen me walk. I know my wheelchair is going to help so much, but I’m still worried
I think the root of the whole “internet pathology problem” really is just people with mental or physical illnesses either accidentally attributing normal human behavior or problems to ones caused by illness(es) or that the genuine human problem is greatly amplified by their illness(es)
For example sometimes I genuinely do not know if my joints are aching because I’ve just overdone it or if it’s because of my EDS
On our main I’ll often ask questions and tag them with DID tags because I THINK that it’s the root cause and it may not be at all
I’m not sure there’s anythingthat necessarily needs to be done about these things, I think we’re all not sure of most things because every new moment is somewhere we haven’t yet been and that’s okay
Disability services interactions be like
ds: we can offer a support person, or home help, or some level of assistance!
me: ...but i don't want a support person?
ds: we can offer a supportive person to help you live better
me: i just said i don't want a support person
ds: we can give you home help and someone to keep you company
me: are you completely ignoring me. i want to keep what freedom i have left.
ds: we can offer support person, you can pick them, we don't chose them for y--
me: i want to stay as independent as possible!!!!!! i've already lost most of my life to my disability! i was told you'd help me find ways to be independent. having a person to help me will ruin my mental health because i hate being seen as incapable.
ds: oh.
ds: we can offer a support person!
we meet another specialist tomorrow
...he's the last option in our region before we've run out of clinicians who will help.
I have one appointment with him, and he made it very clear he doesn't want to see me afterwards because I already have input from a pain specialist...that pain specialist has been close to pointless.
Wish us luck!
dude i’m so bricked up right now (i have not shat in days)