autonomicdysreflexia hashtag performance

#AutonomicDysreflexia raises awareness about a potentially life-threatening condition affecting individuals with spinal cord injuries, highlighting symptoms, management strategies, and the importance of education for patients and caregivers in emergency situations.

(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

OHHHHOHOHOOO and now we know what we were missing. SO. pain below LOI triggers AD, we know this. my tumbly hurts, we know this. I was triggering AD even I ate because my tumbly hurts, we know this. the more SNS activity is happening (in my case pain below LOI), the slower my gastric emptying. so it seems there was a cycle: slow emptying causing pain causing slower emptying causing pain. basically this was going to continue making itself worse. I would think, and I have some follow ups next week to get a better plan, but I would think that means that the less pain I'm in the MORE oral intake I may be able to tolerate? maybe I'm hopeful #autonomicdysreflexia #gastroparesis #sci #spinalcordinjury #gjtube #tubefed

OHHHHOHOHOOO and now we know what we were missing. SO. pain below LOI triggers AD, we know this. my tumbly hurts, we know this. I was triggering AD even I ate because my tumbly hurts, we know this. the more SNS activity is happening (in my case pain below LOI), the slower my gastric emptying. so it seems there was a cycle: slow emptying causing pain causing slower emptying causing pain. basically this was going to continue making itself worse. I would think, and I have some follow ups next week to get a better plan, but I would think that means that the less pain I'm in the MORE oral intake I may be able to tolerate? maybe I'm hopeful #autonomicdysreflexia #gastroparesis #sci #spinalcordinjury #gjtube #tubefed

I have a scary appointment tomorrow, could I steal some encouragement from the abyss of the internet? #chronicillness #gastroparesis #gp #fries #fiveguys #autonomicdysreflexia #sciawareness #tummyissues #mom

I have a scary appointment tomorrow, could I steal some encouragement from the abyss of the internet? #chronicillness #gastroparesis #gp #fries #fiveguys #autonomicdysreflexia #sciawareness #tummyissues #mom

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

ACTUALLY NO I'm NOT gonna disappear because you know what, we need to share what this is like. I'm embarrassed. I'm embarrassed that my intervention didn't fucking work today. I'm embarrassed that I'm 21 in a children's hospital because my GI guy hasn't been able to find adult care that will take me. I'm embarrassed that I think it's wrong to share when I'm struggling! I'm not being private because I want to be, I'm shutting up because I feel like I have no right to struggle. fuck it. I'm a human being and my own body is trying to break me. that's hard! that's hard. I feel so alone. I feel SO alone and it isn't true. you are never as alone as you feel I fucking swear because I'm thinking about everyone going through their own body's wrath for no good fucking reason. I'm thinking about my friend fighting their neuro system, I'm thinking about my friend fighting his immune system, I'm thinking about my friend fighting her renal/urinary and GI system, I'm thinking about my remarkably stable friend (Jordan that was not tempting fate you're doing great keep it up I beg) and I'm thinking about you. this. shit. is. hard. I'm not gonna sit away and pretend it isn't just because I think I'm a burden on people's minds. I'm a burden and THATS. OKAY. communities are there to share what it feels like to burden our own selves. communities exist to burden each other. we exist to hear the things that eat us alive if we don't say them out loud. tell me something that scares you! I'll go first: I'm terrified that not only will I never stabilize, I'll be alone because of it. and that is not true. we've got this, you've got this, happy new year #chronicillness #disabled #hospital #hospitaladmission #sci #paraplegic #spinalcordinjury #complication #autonomicdysreflexia #sucks #ehlersdanlossyndrome #gastroparesis #mcas #suspectedmcas #emergency

ACTUALLY NO I'm NOT gonna disappear because you know what, we need to share what this is like. I'm embarrassed. I'm embarrassed that my intervention didn't fucking work today. I'm embarrassed that I'm 21 in a children's hospital because my GI guy hasn't been able to find adult care that will take me. I'm embarrassed that I think it's wrong to share when I'm struggling! I'm not being private because I want to be, I'm shutting up because I feel like I have no right to struggle. fuck it. I'm a human being and my own body is trying to break me. that's hard! that's hard. I feel so alone. I feel SO alone and it isn't true. you are never as alone as you feel I fucking swear because I'm thinking about everyone going through their own body's wrath for no good fucking reason. I'm thinking about my friend fighting their neuro system, I'm thinking about my friend fighting his immune system, I'm thinking about my friend fighting her renal/urinary and GI system, I'm thinking about my remarkably stable friend (Jordan that was not tempting fate you're doing great keep it up I beg) and I'm thinking about you. this. shit. is. hard. I'm not gonna sit away and pretend it isn't just because I think I'm a burden on people's minds. I'm a burden and THATS. OKAY. communities are there to share what it feels like to burden our own selves. communities exist to burden each other. we exist to hear the things that eat us alive if we don't say them out loud. tell me something that scares you! I'll go first: I'm terrified that not only will I never stabilize, I'll be alone because of it. and that is not true. we've got this, you've got this, happy new year #chronicillness #disabled #hospital #hospitaladmission #sci #paraplegic #spinalcordinjury #complication #autonomicdysreflexia #sucks #ehlersdanlossyndrome #gastroparesis #mcas #suspectedmcas #emergency

Replying to @crimesagainstroach okay but like what if it's being mean to me #autonomicdysreflexia

Replying to @crimesagainstroach okay but like what if it's being mean to me #autonomicdysreflexia

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