fulltimewheelchairuser hashtag performance

let's talk about the ooky parts of taking care of bodies that don't work right. it's scary to not know this stuff! my wonderful friend @Brie helped me learn what I needed to know and I've had a few people reach out and ask questions, scared because they may be starting soon. I wish it wasn't so scary, and I don't think it has to be. If I can answer anything, let me know. obviously I'm not gonna show a real body, but I'm comfortable using medical terminology and converting to layman's terms. were you scared when you started cathing? what could have made it easier? #neurogenicbladder #spinalcordinjury #selfcath #selfcatheterization #isc #fisc #catheter #catheterization #chronicillnesscommunity #gastroparesis #mcas #tubefed #gjtube #surgicalfeedingtube #chronicillness #tired #spoonie #zebra #hypermobileehlersdanlossyndrome #ehlersdanlos #paraplegic #sci #paralyzed #tetheredcord #tetheredcordsyndrome #college #fulltimewheelchairuser #wheelchairuser #nonambulatorywheelchairuser #babewithamobilityaid #edsandco #disabled #ehlersdanlossyndrome #chronicpain #medtok

I was having potatoes this morning wondering why they hurt, when they are usually a safe food. realized it was the skins and my mind when back to @Letty 🤙 telling me not to be ashamed if I need to put food back on my plate . so thank you ^_^ and passing this on to others. obviously I'm doing so with tact and not like. loogie ing it. because I just know that's gonna be a question lol. but you! don't have to keep eating things that hurt you! even if the best way to remove that bit is to chew the rest first #chronicillnesscommunity #gastroparesis #mcas #tubefed #gjtube #surgicalfeedingtube #chronicillness #tired #spoonie #zebra #hypermobileehlersdanlossyndrome #ehlersdanlos #paraplegic #sci #paralyzed #tetheredcord #tetheredcordsyndrome #college #fulltimewheelchairuser #wheelchairuser #nonambulatorywheelchairuser #babewithamobilityaid #edsandco #ehlersdanlossyndrome #chronicpain #medtok

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

"hey so my skin is shredding, my teeth hurt, my eyesight is changing, old scars are reopening" "y'know anxiety can do that and I see you have a GAD diagnosis, so I'm thinking it's definitely that" it was scurvy😃 I was new to dining halls and eating no vitamin C eat your vitamin C I beg of you 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 #gjtube #tubie #tubefed #scurvy #dininghall #malpractice #medicalmalpractice #vitamin #vitamins #cleanse

"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

food for thought #accessible #accessibility #university #college #collegestudent #disabledstudent #campus #menwithlonghair #chronicillnesscommunity #gastroparesis #mcas #tubefed #gjtube #surgicalfeedingtube #chronicillness #tired #spoonie #zebra #hypermobileehlersdanlossyndrome #ehlersdanlos #paraplegic #sci #paralyzed #tetheredcord #tetheredcordsyndrome #college #fulltimewheelchairuser #wheelchairuser #nonambulatorywheelchairuser #babewithamobilityaid #edsandco #disabled #ehlersdanlossyndrome #chronicpain #medtok

"no doing self destructive shit" BAM the universe apparently agreed with her. damnit Leah 😭 #college #collegestudent #university #disabled #disabled #student #tubefed #paralyzed #paraplegic #tetheredcord #ehlersdanlos #heds #gastroparesis suspected #mcas #orthosis #orthotic #kafo #user #fulltimewheelchairuser #wheelchairuser #wheelchairlife #dorm #dormlife

I've said it before and I'll say it again: in the first photo I had forgotten what it felt like to think complex thoughts. let them help you. and if they won't, make them. listen to your friends, listen to the people who can see you dying, listen to your quality of life getting on its hands and knees and begging. you deserve health, comfort, nutrition, safety and security in your own body, quality of life, and help getting there #chronicillnesscommunity #gastroparesis #mcas #tubefed #gjtube #surgicalfeedingtube #chronicillness #tired #spoonie #zebra #hypermobileehlersdanlossyndrome #ehlersdanlos #paraplegic #sci #paralyzed #tetheredcord #tetheredcordsyndrome #college #fulltimewheelchairuser #wheelchairuser #nonambulatorywheelchairuser #babewithamobilityaid #edsandco #disabled #ehlersdanlossyndrome #chronicpain #medtok

and I'm gonna like it 😭😭 see here's the thing tho right: if I go I have to get up. #college #collegestudent #university #disabled #disabled #student #tubefed #paralyzed #paraplegic #tetheredcord #ehlersdanlos #heds #gastroparesis suspected #mcas #orthosis #orthotic #kafo #user #fulltimewheelchairuser #wheelchairuser #wheelchairlife #dorm #dormlife

see: my friend who got onto the arm of an armchair and ended up on concussion protocol for the rest of the night because shockingly it fell #college #collegestudent #university #disabled #disabled #student #tubefed #paralyzed #paraplegic #tetheredcord #ehlersdanlos #heds #gastroparesis suspected #mcas #orthosis #orthotic #kafo #user #fulltimewheelchairuser #wheelchairuser #wheelchairlife #dorm #dormlife

eheeheehee we're completely fucked completely fucked, weeee're completely fucked #college #collegestudent #university #disabled #disabled #student #tubefed #paralyzed #paraplegic #tetheredcord #ehlersdanlos #heds #gastroparesis suspected #mcas #orthosis #orthotic #kafo #user #fulltimewheelchairuser #wheelchairuser #wheelchairlife #dorm #dormlife

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

I am 😤an academic weap-😤 mess 😮‍💨 and HEY! that's okay. I'm gonna miss class, I'm gonna reschedule exams, I'm gonna leave class early, I'm probably gonna throw up in the bathroom, pass out during a lab, and narrowly avoid getting E. Coli on my wheelchair (it didn't touch dw, just a close call. there's a plan this time), and it'll be okay. we will be okay <3 I got all As for the first time in college last semester. granted, I wasn't taking ecology and I haaaaate ecology but the point is I'm getting better at this stuff. I'm gonna try to share more of the school side of things this semester by request, stay tuned! #college #collegestudent #university #disabled #disabled #student #tubefed #paralyzed #paraplegic #tetheredcord #ehlersdanlos #heds #gastroparesis suspected #mcas #orthosis #orthotic #kafo #user #fulltimewheelchairuser #wheelchairuser #wheelchairlife #dorm #dormlife

I'm scared, and I'm sad, and I'm grieving, and I'm angry. AND IM SMILING. AND IM MOVING. AND IM GETTING MY OWN MAIL. AND I'M SHOWERING. AND IM GOING OUTSIDE. AND IM DRAWING. AND IM THINKING. I CAN THINK! I can think. you guys. on the ride up to school my mom asked if I was okay and I was overstimulated because I was THINKING. I couldn't think. medical interventions are scary, and they are life changing. it's really going to be okay. I am still terrified of what I said yesterday but that's part of the grieving process and it's okay. #college #collegestudent #university #disabled #disabled #student #tubefed #paralyzed #paraplegic #tetheredcord #ehlersdanlos #heds #gastroparesis suspected #mcas #orthosis #orthotic #kafo #user #kneeanklefootorthosis #fulltimewheelchairuser #wheelchairuser #wheelchairlife #dorm #dormlife #enteralfeeding #tubefed #gjtube #jtube #gtube #nutrition #butterflies🦋

I have adult onset occult tethered cord syndrome. ask me anything 💞 #raredisorder #raredisease #rare #ama #awareness #rarediseaseawareness #nottooraretocare #occulttetheredcordsyndrome #spinalcordinjury #spinalcordinjurysurvivor #paraplegic #sci #paralyzed #tetheredcord #tetheredcordsyndrome #fulltimewheelchairuser #wheelchairuser #nonambulatorywheelchairuser #chronicillnesscommunity #gastroparesis #mcas #tubefed #gjtube #surgicalfeedingtube #chronicillness #tired #spoonie #zebra #hypermobileehlersdanlossyndrome #ehlersdanlos #babewithamobilityaid #edsandco #disabled #ehlersdanlossyndrome #chronicpain #medtok

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

right, right right. I'm getting a degree so that I know how the world works and don't think science can be overwritten by religion. right. omw 🧑‍🦽💨 #college #collegestudent #bachelors #bachelorsdegree #scientist #biologydegree #nationalism #nationalismisnotpatriotism #gen smth smth #university #disabled #disabled #student #tubefed #paralyzed #paraplegic #tetheredcord #ehlersdanlos #heds #gastroparesis suspected #mcas #orthosis #orthotic #kafo #user #fulltimewheelchairuser #wheelchairuser #wheelchairlife #dorm #dormlife

Replying to @chronicallycal I started cathing at least 6 months after when I should have started, and about 4 months BEFORE my urodynamics study (which was last week). the misconception that I had was that I didn't need management before testing. I'm currently presumed neurogenic bladder with confirmed high pelvic tone. I will say, it's insanely difficult IME to cath with active high tone but! my tone got better after I started having less constant severe retention. a lot of the tone for me came from a response to the breakthrough/overflow incontinence. ask your doctor, of course, but I'd say if you're thinking about it it's time to at least look into it with your care team. it definitely changed the quality of my life massively, and it's a lot easier to work on solutions when I'm not spending every moment trying to manage my bladder #neurogenicbladder #incontinence " #taboo " #selfcath #selfcatheterization #isc #chronicillnesscommunity #gastroparesis #mcas #tubefed #gjtube #surgicalfeedingtube #chronicillness #tired #spoonie #zebra #hypermobileehlersdanlossyndrome #ehlersdanlos #paraplegic #sci #paralyzed #tetheredcord #tetheredcordsyndrome #college #fulltimewheelchairuser #wheelchairuser #nonambulatorywheelchairuser #babewithamobilityaid #edsandco #disabled #ehlersdanlossyndrome #chronicpain #medtok

because that was the scariest mfing admission of my life and it was nothing compared to the months prior. I haven't really processed it yet but it is what it is and I've always processed through sharing, so ask me absolutely anything. I mean, there are limits...but it can't be weirder than what my friends with no filters have already asked lmao, and I do live them for it /gen #feedingtubeawareness #feedingtubeawarenessweek #tubefed #gjtube #gtube #jtube #njtube #ngtube #nutrition #enteralfeeding #gastroparesis suspected #mcas #mastcellactivation #college #collegestudent #university #disabled #disabled #student #tubefed #paralyzed #paraplegic #tetheredcord #sci #ehlersdanlos #orthosis #orthotic #kafo #user #fulltimewheelchairuser #wheelchairuser #wheelchairlife #dorm #dormlife