Kyra

fulltimewheelchairuser hashtag performance

#fulltimewheelchairuser celebrates the daily lives and experiences of those using wheelchairs. It fosters empowerment, awareness, diversity, inclusivity, community, resilience, and strength, showcasing unique stories, challenges, and achievements.
Replying to @cane.and.disabledyalk were so so close! it was specifically my ankles. when it the proper position it caused this whole chain reaction of pain up my back. my tendons were fine, the connective chain wasn't. after surgery my back handles flat feet better, but I've been noj weight bearing for so long on ankles that tug up like that that now we've gotta stretch the tendons back out. we're working on it! as usual, this is not the only sign of TCS nor is it only attributable to TCS. just one of my signs #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
2.3k
Replying to @cane.and.disabledyalk were so so close! it was specifically my ankles. when it the proper position it caused this whole chain reaction of pain up my back. my tendons were fine, the connective chain wasn't. after surgery my back handles flat feet better, but I've been noj weight bearing for so long on ankles that tug up like that that now we've gotta stretch the tendons back out. we're working on it! as usual, this is not the only sign of TCS nor is it only attributable to TCS. just one of my signs #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
I think a serious discussion needs to be had about when symptoms are being caused by underlying conditions vs when that condition is causing another disorder. there's a sign of tethered cord in the first 3 pictures, do you see it? Let me know. it's actually the exact same sign, involving two body parts. EDS doesn't cause paralysis. It can cause CCI, TCS, atrophy, some people theorize a dystrophal component, syrinxes, it often goes with Spina Bifida, there are a lot of things that EDS is responsible for that can paralyze someone but it cannot do it on its own. there's this habit that providers have of saying "well it's EDS, so of course it did something odd" and brushing it off. EDS can't be fixed, but MANY of its comorbidities and secondary disorders can be. symptoms need to be addressed, as do their direct cause. we can acknowledge that there are layers and do that at the same time. #tetheredcord #cervicalinstability #paraplegic #paralysis #fulltimewheelchairuser #ehlersdanlossyndrome #ehlersdanlos #hypermobileehlersdanlossyndrome #connectivetissuedisorder #earlyintervention
1.8k
I think a serious discussion needs to be had about when symptoms are being caused by underlying conditions vs when that condition is causing another disorder. there's a sign of tethered cord in the first 3 pictures, do you see it? Let me know. it's actually the exact same sign, involving two body parts. EDS doesn't cause paralysis. It can cause CCI, TCS, atrophy, some people theorize a dystrophal component, syrinxes, it often goes with Spina Bifida, there are a lot of things that EDS is responsible for that can paralyze someone but it cannot do it on its own. there's this habit that providers have of saying "well it's EDS, so of course it did something odd" and brushing it off. EDS can't be fixed, but MANY of its comorbidities and secondary disorders can be. symptoms need to be addressed, as do their direct cause. we can acknowledge that there are layers and do that at the same time. #tetheredcord #cervicalinstability #paraplegic #paralysis #fulltimewheelchairuser #ehlersdanlossyndrome #ehlersdanlos #hypermobileehlersdanlossyndrome #connectivetissuedisorder #earlyintervention
not only could I walk, GASP, I know more people that can walk who need wheelchairs than people who can't walk and need wheelchairs. WOAH eheehee ahhhh I know too many people with congenital disabilities who can walk who can't comprehend that ppl with acquired disabilities have have dynamic mobility as well. it's truly impressive anywho #whee #wheelchair #wheelchairlife #wheelchairuser #fulltimewheelchairuser #nonambulatory #ambulatorywheelchairuser #parttimewheelchairuser #congenital #congenitaldisability #acquireddisability #disability #disabled #differentlyabled #handicapable
1.5k
not only could I walk, GASP, I know more people that can walk who need wheelchairs than people who can't walk and need wheelchairs. WOAH eheehee ahhhh I know too many people with congenital disabilities who can walk who can't comprehend that ppl with acquired disabilities have have dynamic mobility as well. it's truly impressive anywho #whee #wheelchair #wheelchairlife #wheelchairuser #fulltimewheelchairuser #nonambulatory #ambulatorywheelchairuser #parttimewheelchairuser #congenital #congenitaldisability #acquireddisability #disability #disabled #differentlyabled #handicapable
and if anyone has experience with an NJ that is both where it belongs in the jejunom and curved in the stomach, how long did it take to decompress? they're hoping when it relaxes they can uncurve the portion in my stomach and give me some more room to work with on the external portion. thanks, ly guys and I'm explicitly opening up my comments for any and all things that might be helpful. it's gonna be a bumpy ride but I'm on a hypoallergenic ✨infant formula✨ so fingers crossed. you're also so welcome to drop Spotify playlists in the comments and I will go listen #chronicillness #distraction #coping :) #tired #spoonie #zebra #hypermobile #hypermobileehlersdanlossyndrome #ehlersdanlos #paraplegic #sci #paralyzed #tetheredcord #tetheredcordsyndrome #gastroparesis #nj #tubefed #college #fulltimewheelchairuser #wheelchairuser #nonambulatorywheelchairuser #babewithamobilityaid #edsandco #jointinstability #ehlersdanlossyndrome #heds #hypermobility #malignanthypermobility #jointissues #jointpain #chronicpain #medicalsystem
1.4k
and if anyone has experience with an NJ that is both where it belongs in the jejunom and curved in the stomach, how long did it take to decompress? they're hoping when it relaxes they can uncurve the portion in my stomach and give me some more room to work with on the external portion. thanks, ly guys and I'm explicitly opening up my comments for any and all things that might be helpful. it's gonna be a bumpy ride but I'm on a hypoallergenic ✨infant formula✨ so fingers crossed. you're also so welcome to drop Spotify playlists in the comments and I will go listen #chronicillness #distraction #coping :) #tired #spoonie #zebra #hypermobile #hypermobileehlersdanlossyndrome #ehlersdanlos #paraplegic #sci #paralyzed #tetheredcord #tetheredcordsyndrome #gastroparesis #nj #tubefed #college #fulltimewheelchairuser #wheelchairuser #nonambulatorywheelchairuser #babewithamobilityaid #edsandco #jointinstability #ehlersdanlossyndrome #heds #hypermobility #malignanthypermobility #jointissues #jointpain #chronicpain #medicalsystem
never once have I thought "it's not that bad yet, I don't need [whatever intervention I'm trying to avoid] and not found myself critical. OOPS. taking this as a lesson, y'all we are hardwired to avoid medical intervention at all costs. it's how our society raises people. if you're worried you may need something, bother people until you can ask. I waited til 5 members of my care team told me I needed to start looking into this before bringing it to the proper doctor, don't do what I did. be kind to your meatsuit. it's trying its best, it needs help. it takes months to get in with specialists even when already established, pestering through portals and such is allowed if you are not stable. I know I'm not the only one who struggles with that. #chronicillness #tired #spoonie #zebra #hypermobile #hypermobileehlersdanlossyndrome #ehlersdanlos #paraplegic #sci #paralyzed #tetheredcord #tetheredcordsyndrome #collegestudent #fulltimewheelchairuser #wheelchairuser #nonambulatorywheelchairuser #babewithamobilityaid #edsandco #ehlersdanlossyndrome #heds #chronicpain #medicalsystem #gastroparesis #gp #mcas #suspectedmcas
1.3k
never once have I thought "it's not that bad yet, I don't need [whatever intervention I'm trying to avoid] and not found myself critical. OOPS. taking this as a lesson, y'all we are hardwired to avoid medical intervention at all costs. it's how our society raises people. if you're worried you may need something, bother people until you can ask. I waited til 5 members of my care team told me I needed to start looking into this before bringing it to the proper doctor, don't do what I did. be kind to your meatsuit. it's trying its best, it needs help. it takes months to get in with specialists even when already established, pestering through portals and such is allowed if you are not stable. I know I'm not the only one who struggles with that. #chronicillness #tired #spoonie #zebra #hypermobile #hypermobileehlersdanlossyndrome #ehlersdanlos #paraplegic #sci #paralyzed #tetheredcord #tetheredcordsyndrome #collegestudent #fulltimewheelchairuser #wheelchairuser #nonambulatorywheelchairuser #babewithamobilityaid #edsandco #ehlersdanlossyndrome #heds #chronicpain #medicalsystem #gastroparesis #gp #mcas #suspectedmcas
haaaa he meant no harm but I am not excited to follow back up with that doctor especially considering I've gotten worse. I'm not mad, it wasn't an unkind thing to say, I just. I know. I know, believe me 😅 #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
1.2k
haaaa he meant no harm but I am not excited to follow back up with that doctor especially considering I've gotten worse. I'm not mad, it wasn't an unkind thing to say, I just. I know. I know, believe me 😅 #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
y'know how sometimes it gets worse and never gets better again? I'm scared he's to being vulnerable in case anyone needs to see they aren't alone right now #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
1.2k
y'know how sometimes it gets worse and never gets better again? I'm scared he's to being vulnerable in case anyone needs to see they aren't alone right now #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
putting my boxing gloves on for this upcoming appt #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
1.1k
putting my boxing gloves on for this upcoming appt #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

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