tetheredcord hashtag performance

#TetheredCord highlights the deep connections of relationships, emphasizing emotions, shared experiences, and the bond that ties individuals together. It explores themes of love, attachment, vulnerability, support, and personal growth.

(as in my nervous system faking getting better) did you know that in SCIs at T6 or higher if you experience a noxious stimulus like pain below level of injury, your sympathetic and parasympathetic nervous systems can disagree so hard it can be ✨fatal✨? it's called autonomic dysreflexia, and it sucks. when the sympathetic nervous system notices something is wrong, it reacts peripherally and then the brain sends signals down through the spinal cord to calm it down. if the location where that signal travels through is not intact, the brain can't calm it down. below LOI freaks out and clamps down, above LOI freaks out and dilates trying to fix it. all the blood ends up too high, the opposite of lost other dysautonomias, and it causes: severe blood pressure spikes (I often spike from 120/90 to 160/110), spasms, malaise, the feeling that something is viscerally wrong, anxiety, flushing above LOI, clammy cold blow LOI, and puts you at imminent risk for heart attack or stroke if unresolved. this is solved by removing the noxious stimulus! 80% of the time iirc, that's a distended bladder. but even a hangnail can do it. in my case, one of my most common triggers is things hitting my stomach. as always, never repeat anything I say without fact checking as I am not a medical professional. but there's an explanation of how half my nervous system told me everything was okay while the other half thinks I'm genuinely dying when I eat. toodleoo #autonomicdysreflexia #autonomicdysfunction #spinalcordinjury #paraplegic #tetheredcord #nj #gastroparesis #nervoussystem #cool #science #facts #didyouknowfacts

(as in my nervous system faking getting better) did you know that in SCIs at T6 or higher if you experience a noxious stimulus like pain below level of injury, your sympathetic and parasympathetic nervous systems can disagree so hard it can be ✨fatal✨? it's called autonomic dysreflexia, and it sucks. when the sympathetic nervous system notices something is wrong, it reacts peripherally and then the brain sends signals down through the spinal cord to calm it down. if the location where that signal travels through is not intact, the brain can't calm it down. below LOI freaks out and clamps down, above LOI freaks out and dilates trying to fix it. all the blood ends up too high, the opposite of lost other dysautonomias, and it causes: severe blood pressure spikes (I often spike from 120/90 to 160/110), spasms, malaise, the feeling that something is viscerally wrong, anxiety, flushing above LOI, clammy cold blow LOI, and puts you at imminent risk for heart attack or stroke if unresolved. this is solved by removing the noxious stimulus! 80% of the time iirc, that's a distended bladder. but even a hangnail can do it. in my case, one of my most common triggers is things hitting my stomach. as always, never repeat anything I say without fact checking as I am not a medical professional. but there's an explanation of how half my nervous system told me everything was okay while the other half thinks I'm genuinely dying when I eat. toodleoo #autonomicdysreflexia #autonomicdysfunction #spinalcordinjury #paraplegic #tetheredcord #nj #gastroparesis #nervoussystem #cool #science #facts #didyouknowfacts

if you say you're a specialist, diagnose me with something you do not have the qualifications to diagnose, and then call it the wrong name, you don't deserve your medical lisence. I'm gonna enjoy dropping my master's degree on his desk when I get it #malpractice #medicalnegligence #medicalneglect #ehlersdanlossyndrome #tetheredcord #spinalcordinjury #misdiagnosis #doctor #doctorwho

if you say you're a specialist, diagnose me with something you do not have the qualifications to diagnose, and then call it the wrong name, you don't deserve your medical lisence. I'm gonna enjoy dropping my master's degree on his desk when I get it #malpractice #medicalnegligence #medicalneglect #ehlersdanlossyndrome #tetheredcord #spinalcordinjury #misdiagnosis #doctor #doctorwho

"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

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

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

dyou ever think you're the only one who knows what's going on in your head til you see someone else going through it? what didn't you realize someone else understood til you saw it with your own eyes? because I've known this was a possibility for a long time, and the only thing that makes me feel like I'll be okay now that it has to happen is seeing other people go through it. not just seeing them be okay, but seeing before that. people sharing how shit this all feels AND how it gets better. seeing other people be human. I'm being human so someone else might feel less like their life is over if they need a terrifying medical intervention than I do every time it happens. every time, before I find people that I can see go through it and be okay on the other side, every time without fail I think I'm some exception. I think I'm the only one who wonders if we made the right choice. the only one who is terrified for the process but excited to function better later. the only one who can't stand the thought of being more visibly sick than I already am. the only one who thinks I'm morally wrong for accepting help, or even suggesting interventions when needed. the one one that is being punished when really I'm just a human being with fucked up collagen who needs help sometimes. #fulltimewheelchairuser #wheelchairuser #disabled #paralyzed #paralysis #paraplegic #spinalcordinjury #sci #science #ehlersdanlossyndrome #tetheredcord #gastroparesis suspected #mcas #njtube #tubefed #autonomicdysreflexia

dyou ever think you're the only one who knows what's going on in your head til you see someone else going through it? what didn't you realize someone else understood til you saw it with your own eyes? because I've known this was a possibility for a long time, and the only thing that makes me feel like I'll be okay now that it has to happen is seeing other people go through it. not just seeing them be okay, but seeing before that. people sharing how shit this all feels AND how it gets better. seeing other people be human. I'm being human so someone else might feel less like their life is over if they need a terrifying medical intervention than I do every time it happens. every time, before I find people that I can see go through it and be okay on the other side, every time without fail I think I'm some exception. I think I'm the only one who wonders if we made the right choice. the only one who is terrified for the process but excited to function better later. the only one who can't stand the thought of being more visibly sick than I already am. the only one who thinks I'm morally wrong for accepting help, or even suggesting interventions when needed. the one one that is being punished when really I'm just a human being with fucked up collagen who needs help sometimes. #fulltimewheelchairuser #wheelchairuser #disabled #paralyzed #paralysis #paraplegic #spinalcordinjury #sci #science #ehlersdanlossyndrome #tetheredcord #gastroparesis suspected #mcas #njtube #tubefed #autonomicdysreflexia

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

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

being friends with people with unstable health is scary. we take up a lot of space emotionally. but a friend reminded me recently: everyone dies. everyone gets sick, everyone becomes disabled if they are so lucky to live long enough, everyone breaks, everyone heals, everyone dies. remember to spend time with the people you love now so that when shit hits the fan you remember that we aren't just our illnesses. oh, and my username is the same on Instagram, speaking of shit hitting the fan #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

being friends with people with unstable health is scary. we take up a lot of space emotionally. but a friend reminded me recently: everyone dies. everyone gets sick, everyone becomes disabled if they are so lucky to live long enough, everyone breaks, everyone heals, everyone dies. remember to spend time with the people you love now so that when shit hits the fan you remember that we aren't just our illnesses. oh, and my username is the same on Instagram, speaking of shit hitting the fan #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

everything I did this year, absolutely everything, was ruled by my disability. but that's a good thing, it means I'm acknowledging it now and learning through it. this time last year I was giving up. at the beginning of this year my doctor described me as in a constant state of denial. 6 months ago I was pretending I could be the same person. recently I had to address the fact that I've changed. it happens, and it isn't a bad thing. it's difficult to lose something without gaining something, even just knowledge. I could sit and wallow in loss and pain until I'm blue in the face, or I could learn. anyone who really knows me can tell you I love to learn. so here's to learning! and a boring new years, please lmao. I've already had one Christmas season ER trip, I'll take new years at home please. #growth #noahkahan #mothermother #loss #grief #petloss #mobility #healthcare #tetheredcord #sci #recovery #fypシ゚ #learning #disability #disabilitytiktok #orthosis #orthoses #kafos #afo #orthotics #paraplegic

everything I did this year, absolutely everything, was ruled by my disability. but that's a good thing, it means I'm acknowledging it now and learning through it. this time last year I was giving up. at the beginning of this year my doctor described me as in a constant state of denial. 6 months ago I was pretending I could be the same person. recently I had to address the fact that I've changed. it happens, and it isn't a bad thing. it's difficult to lose something without gaining something, even just knowledge. I could sit and wallow in loss and pain until I'm blue in the face, or I could learn. anyone who really knows me can tell you I love to learn. so here's to learning! and a boring new years, please lmao. I've already had one Christmas season ER trip, I'll take new years at home please. #growth #noahkahan #mothermother #loss #grief #petloss #mobility #healthcare #tetheredcord #sci #recovery #fypシ゚ #learning #disability #disabilitytiktok #orthosis #orthoses #kafos #afo #orthotics #paraplegic

because realizing something major needs to change is the scariest feeling on the planet, and we'll all get through it #chronicillness #disabled #tetheredcordsyndrome #tetheredcord #gastroparesis suspected #mastcellactivationsyndrome #healthy #future #genetics #geneticdisorder #ehlersdanlossyndrome #hypermobileehlersdanlossyndrome #heds #njtube #nutrition #tubefed #tubefedadult #tattoo #homework

the pain was my spinal cord and the tissues around it shredding :) and no, my PT did not do as suggested. what was the least true thing you were told in your diagnostic journey? sometimes pain does trigger things like functional symptoms, but even if that were what was happening that isn't how you'd treat it #medicalneglect #medicalabuse #medicalgaslighting #tetheredcord #discdegeneration #ehlersdanlos #ehlersdanlossyndrome #ehlersdanlossyndromecheck #hypermobileehlersdanlossyndrome #hypermobility #misdiagnosed #misdiagnosis #crps #crpsmisdiagnosis #fnd #fndmisdiagnosis

the pain was my spinal cord and the tissues around it shredding :) and no, my PT did not do as suggested. what was the least true thing you were told in your diagnostic journey? sometimes pain does trigger things like functional symptoms, but even if that were what was happening that isn't how you'd treat it #medicalneglect #medicalabuse #medicalgaslighting #tetheredcord #discdegeneration #ehlersdanlos #ehlersdanlossyndrome #ehlersdanlossyndromecheck #hypermobileehlersdanlossyndrome #hypermobility #misdiagnosed #misdiagnosis #crps #crpsmisdiagnosis #fnd #fndmisdiagnosis

the way that I'm sharing finding catheters in my pocket would horrify me 6 months ago, who would not say the word "catheter" ah growth? I guess? huh ANYWHO it's hard to find info on the uncomfortable stuff, which always makes me wanna talk about it and uncomfortable amount. seatbelts, everyone what's one random bodily function you're curious if SCIs affect? before having one, I thought they basically just made your legs not work, or just your arms legs and diaphragm, etc. they fck with a lot more than expected #medicalequipment #disabilityawareness #sciawareness #neurogenicbladder #sci #spinalcordinjurysurvivor #tetheredcord #ehlersdanlos #intermittentcath #isc #selfcath #catheter

the way that I'm sharing finding catheters in my pocket would horrify me 6 months ago, who would not say the word "catheter" ah growth? I guess? huh ANYWHO it's hard to find info on the uncomfortable stuff, which always makes me wanna talk about it and uncomfortable amount. seatbelts, everyone what's one random bodily function you're curious if SCIs affect? before having one, I thought they basically just made your legs not work, or just your arms legs and diaphragm, etc. they fck with a lot more than expected #medicalequipment #disabilityawareness #sciawareness #neurogenicbladder #sci #spinalcordinjurysurvivor #tetheredcord #ehlersdanlos #intermittentcath #isc #selfcath #catheter

ITS NOT FUNNY BUT ISNT IT side note: it was a really a fall that worsened my tethered cord and led to the progressive paralysis! so uh. don't do that. literally got my wheelchair, which I'd gotten fit for for being a fall risk, a week after I fell too what the fuck. and to that I say! aw dang it I need a nap and I can't have one btw so uh. heads #tetheredcordsyndrome #tetheredcord #paraplegic #paralysis #paralyzed #t4 #sci #spinalcordinjury #Spinalcordinjurywithoutradiographicalanomoly #progressiveparalysis

ITS NOT FUNNY BUT ISNT IT side note: it was a really a fall that worsened my tethered cord and led to the progressive paralysis! so uh. don't do that. literally got my wheelchair, which I'd gotten fit for for being a fall risk, a week after I fell too what the fuck. and to that I say! aw dang it I need a nap and I can't have one btw so uh. heads #tetheredcordsyndrome #tetheredcord #paraplegic #paralysis #paralyzed #t4 #sci #spinalcordinjury #Spinalcordinjurywithoutradiographicalanomoly #progressiveparalysis

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

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