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Just got back from the doctor (the fantastic one who puts my joints back in place)
And I’m realizing that the pandemic will have a lasting impact on my health, even if I don’t get sick.
A thread about the indirect health impacts of the pandemic for some disabled folk—
And I’m realizing that the pandemic will have a lasting impact on my health, even if I don’t get sick.
A thread about the indirect health impacts of the pandemic for some disabled folk—
As some of you know, many of my injuries tend to have permanent consequences.
Due to the severity of my condition, oftentimes, my ligaments cannot be used to create enough tension to relocate my joints. So once something is really bad... it stays bad forever.
Due to the severity of my condition, oftentimes, my ligaments cannot be used to create enough tension to relocate my joints. So once something is really bad... it stays bad forever.
My condition is not technically supposed to be degenerative, but due to my overlapping and kind of complicated circumstances—it is.
The most important thing is prevention, for me.
I need to prevent things from getting worse, given that there is rarely ever any way of going back.
I used to be able to get my joints fixed weekly, and now I’m lucky if I get things fixed monthly. Today was scary.
I need to prevent things from getting worse, given that there is rarely ever any way of going back.
I used to be able to get my joints fixed weekly, and now I’m lucky if I get things fixed monthly. Today was scary.
Firstly, there’s a good chance that my actual EDS specialist will not come back.
He’s old, the pandemic is long lasting, and he may just retire rather than wait 2 years or put himself and his family at risk.
He’s old, the pandemic is long lasting, and he may just retire rather than wait 2 years or put himself and his family at risk.
This news is devastating because even just the tests I was sent for over the past few weeks—the doctors performing the tests didn’t take me seriously until they ran the tests and saw the results for themselves.
My EDS specialist is the one who sees it. And he pushes for me.
My EDS specialist is the one who sees it. And he pushes for me.
Without him, I’m caught falling between the cracks again, and when my health issues aren’t addressed in time—again—the consequences are permanent.
My EDS specialist aside—even the amount of time I need to wait between having my injuries managed is starting to result in permanent damage.
Today, while trying to fix my left ankle (which has been fully dislocated for 3 weeks—I still walk & stand on it when I need to bc my apartment isn’t totally wheelchair accessible...and 3 weeks is long to stay in bed)—we discovered a bone suddenly missing.
We aren’t entirely sure what happened or how. I can’t go for an X-ray or any scans without going to the ER, and the ER is more dangerous than my messed up ankle.
But things have literally started to twist and tangle around themselves inside the joint.
But things have literally started to twist and tangle around themselves inside the joint.
Hearing my doctor tell me “I’ve never seen anything like this”, combined with “your specialist might never come back”, on top of the fact that “this is probably another permanent one”...
I don’t have the words for the way that that feels.
I don’t have the words for the way that that feels.
I just wanted to talk about this, because I’m not sure if non-physically disabled folk are aware of this. The ways in which the pandemic is making many of us sicker, exacerbating our conditions, and putting our health at risk outside of catching COVID19 itself.
Anyway... that’s my thread.
My ankle is still stuck like this for now. We did what we could. A lot of this involves just sitting with the uncertainty of it all.
My ankle is still stuck like this for now. We did what we could. A lot of this involves just sitting with the uncertainty of it all.
I hope everyone is staying as safe as possible.
