Discover and read the best of Twitter Threads about #hypermobile

Most recents (4)

@ICARSBanRandS @NeuroClastic @unsilenced_now So this ONLY applies to children??? I'm still traumatized 8 yrs after being brutally manhandled & physically harmed due to my #EhlersDanlosSyndrome after going to a hospital for 'HELP' while having what I THOUGHT was a panic attack but I now know was a meltdown caused by ...
@ICARSBanRandS @NeuroClastic @unsilenced_now undiagnosed autism. I only discovered a year ago that I'm autistic & what's been happening to me are MELTDOWNS. After I got there, the bright fluorescent lights, painful hard furniture & COLD in the psych ER where I found out the hard way that, once u're there, u can't leave ...
@ICARSBanRandS @NeuroClastic @unsilenced_now until a psychiatrist gets around to seeing you, which was about 17 hours that time although nobody would tell me how much longer I had to wait & they take all ur clothes & shoes & have no pillows or blankets; just a one-ply hospital gown open in the back and non-slip socklets ...
Read 123 tweets
2 yrs ago, to raise awareness for the #MillionsMissing due to #MECFS, I started a ๐Ÿงต on how tragic chronic illness has consumed my life

But I was too sick to finish, & shortly after uninstalled Twitter. Trapped by illness, unable to advocate.

2 surgeries later... ๐Ÿงต, ๐ŸŽฌ 2

1/
2017: I was Prof of #Epidemiology @PublicHealthUGA, researching #HIVprevention and #vaccine prep for emerging epidemics. I directed an epi training program @ICI3D. I loved my work & my amazing colleagues!

I was healthy & active ๐Ÿšด๐Ÿ„โ€โ™‚๏ธ ๐Ÿฅ

2/
Then, I bought a ๐Ÿก and had it renovated. Jan 2018 I moved to the newly built master bedroom addition, I became sick.

โฉ 2 years to 2020. Water burst thru walls on 2 sides of my bed. Revealing walls, subfloor, crawl space filled with mold due to construction defects

3/
Read 22 tweets
As I was musing to @BattenbrgBarbie recently, I suspect there are a bunch of overlaps in the social experience โ€” along with some v important differences, esp around differential inflections along axes of power/oppression โ€” in various experiences of being #NonNormativelyEmbodied:
e.g. (in no particular order & v incompletely): Fat, #ActuallyAutistic+prone to #SensoryOverload, Deaf, in/visibly #disabled, in #ChronicPain or experiencing #chronicillness-relโ€™d #fatigue, racialised, trans, v tall or vshort (even without being a little person), #hypermobile...
I was thinking about how many of the #hypermobility/#EDS-related specificities of providing competent & safe care to me (even when the EDS isnโ€™t DIRECTLY contributing to the current clinical picture)...
Read 8 tweets
Dear #NEISvoid/twitter, I am VINDICATED (&, uh, still hyper on steroids, FWIW). Awesome Sleep/RespDoc is of the educated &firm opinion (upon reviewing my hospital discharge summary, lung function test results...which the hospital still hadnโ€™t passed on yet as of this morning? ๐Ÿ™„)
...that I have NOT suddenly & completely coincidentally managed to develop asthma for the first time in my life at the tender age of 39 (although he thinks it does sound like a bronchospasm cough, which is literally how I was describing it when it first started happening.
Nor do I seem to have any kind of lung problem, nor a recent past upper/lower resp tract infection). Although apparently he hadnโ€™t received the results of either of the sputum culture tests from the hosp. Iโ€™m assuming they were boringly negative or Iโ€™d have heard by now, though.)
Read 37 tweets

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