malignanthypermobility hashtag performance

disabled ppl: all the time people telle they were nervous to talk to me because I look mean or angry, and then they talk to me and I'm the exact opposite. I've noticed this has gotten much, much worse since becoming visibly disabled. I think I look off-putting as a defense, have you experienced this? it was present before, but I used to get told "you look angry til you see someone you know" and now I get "you look angry all the time." but then they'll see me actually angry for the first (and often only) time and never percieve my resting face as angry again because they look so extremely different. so I'm thinking I've picked up a face from the people around me or something. I know the mobility aid users I'm often around have a very "touch me and you lose your hand" attitude so I wonder how far this extends. anyone else? like I know I have an RBF, but I feel like it's gotten worse lmao #college #collegestudent #university #disabled #disabled #student #tubefed #paralyzed #paraplegic #tetheredcord #ehlersdanlos #heds #gastroparesis suspected #mcas #orthosis #orthotic #kafo #user #fulltimewheelchairuser #wheelchairuser #wheelchairlife #dorm #dormlife #chronicillness #tired #spoonie #zebra #hypermobile #hypermobileehlersdanlossyndrome #ehlersdanlos #paraplegic #sci #paralyzed #tetheredcord #tetheredcordsyndrome #college #fulltimewheelchairuser #wheelchairuser #nonambulatorywheelchairuser #babewithamobilityaid #edsandco #jointinstability #ehlersdanlossyndrome #heds #hypermobility #malignanthypermobility #jointissues #jointpain #chronicpain #medicalsystem

"if you'd be anxious about it I wouldn't even do it, I'm certain this is psychosomatic" "EMGs aren't fun and if it doesn't show anything I'm confirming this [false] diagnosis [that EMGs can't actually rule out]" "it's going to hurt, we don't have to go through all this if you stop fighting the diagnosis" I was right the whole time, actually #chronicillness #tired #spoonie #zebra #hypermobile #hypermobileehlersdanlossyndrome #ehlersdanlos #paraplegic #sci #paralyzed #tetheredcord #malpractice #medicalnegligence #gaslight #tetheredcordsyndrome #college #fulltimewheelchairuser #wheelchairuser #nonambulatorywheelchairuser #babewithamobilityaid #edsandco #jointinstability #ehlersdanlossyndrome #heds #hypermobility #malignanthypermobility #jointissues #jointpain #chronicpain #medicalsystem

it had the best gift shop and the elevator was cool. N E WAYS #chronicillness #tired #spoonie #zebra #hypermobile #hypermobileehlersdanlossyndrome #ehlersdanlos #paraplegic #sci #paralyzed #tetheredcord #tetheredcordsyndrome #college #fulltimewheelchairuser #wheelchairuser #nonambulatorywheelchairuser #babewithamobilityaid #edsandco #jointinstability #ehlersdanlossyndrome #heds #hypermobility #malignanthypermobility #jointissues #jointpain #chronicpain #medicalsystem #childhoodillness

"I don't wanna drain, it's gross" "dude it's basically throwing up except it's contained and there's no sound #college #collegestudent #university #disabled #disabled #student #tubefed #paralyzed #paraplegic #tetheredcord #ehlersdanlos #heds #gastroparesis suspected #mcas #orthosis #orthotic #kafo #user #fulltimewheelchairuser #wheelchairuser #wheelchairlife #dorm #dormlife #chronicillness #tired #spoonie #zebra #hypermobile #hypermobileehlersdanlossyndrome #ehlersdanlos #paraplegic #sci #paralyzed #tetheredcord #tetheredcordsyndrome #college #fulltimewheelchairuser #wheelchairuser #nonambulatorywheelchairuser #babewithamobilityaid #edsandco #jointinstability #ehlersdanlossyndrome #heds #hypermobility #malignanthypermobility #jointissues #jointpain #chronicpain #medicalsystem

ever had a doctor tell you to your face you aren't worth helping because you'll just break again? trust us, we know how bad it gets. heart goes out to everyone feeling like the more they get care they less themself they are, we're in the trenches this holiday season lmao #chronicillness #tired #spoonie #zebra #hypermobile #hypermobileehlersdanlossyndrome #ehlersdanlos #paraplegic #sci #paralyzed #tetheredcord #tetheredcordsyndrome #college #fulltimewheelchairuser #wheelchairuser #nonambulatorywheelchairuser #babewithamobilityaid #edsandco #jointinstability #ehlersdanlossyndrome #heds #hypermobility #malignanthypermobility #jointissues #jointpain #chronicpain #medicalsystem #gastroparesis #drhouse suspected #mcas #gjtube

and now for a test of videos with audio. can someone tell me when autogenerated captions show up? I fear since once feature is working the other will break. thanks! #chronicillness #tired #spoonie #zebra #hypermobile #hypermobileehlersdanlossyndrome #ehlersdanlos #paraplegic #sci #paralyzed #tetheredcord #tetheredcordsyndrome #college #fulltimewheelchairuser #wheelchairuser #nonambulatorywheelchairuser #babewithamobilityaid #edsandco #jointinstability #ehlersdanlossyndrome #heds #hypermobility #malignanthypermobility #jointissues #jointpain #chronicpain #medicalsystem

Replying to @aderyn486 to add bc idk why I didnt: my SCI also made me unable to report pain properly so I was in a constant state of autonomic dysreflexia for about 8 months and that can spontaneously kill you. so there's that too. TLDR: we ran out of every other option and my life was in imminent danger. I should not have waited, nor should my care team have. my GI and I both agree that I probably should have had a feeding tube placed about 3 years ago when I started this cycle of "okay for a couple of months, on my honest deathbed for a couple of months" so that at the very least my quality of life could stay consistent and I would know what to do and have the equipment to do it when shit got bad #chronicillness #tired #spoonie #zebra #hypermobile #hypermobileehlersdanlossyndrome #ehlersdanlos #paraplegic #sci #paralyzed #tetheredcord #tetheredcordsyndrome #college #fulltimewheelchairuser #wheelchairuser #nonambulatorywheelchairuser #babewithamobilityaid #edsandco #jointinstability #ehlersdanlossyndrome #heds #hypermobility #malignanthypermobility #jointissues #jointpain #chronicpain #medicalsystem #gjtube #feedingtubeawareness #enteralfeeding #medicalintervention #jtube #medicalequipment #gastroparesis #mcas #sci #autonomicdysreflexia