I can't manage my dysreflexia anymore, it used to be nonexistent i used to be confused when people talked about getting autonomic dysreflexia! Then 2 1/2 years or so after the injury, I got it every time the catheter was blocked,urinating through the penis etc. then it started to happen every time I had a bowel movement or they did a "touch" during care. I've gotten advice about these problems from here, which is what led me to getting a much larger catheter, and trying to obtain numbing cream for BP. Then it started to happen when my testicles were in a bad spot my spasms literally trying to crush them so I have two things in between my legs right now, they're pulled up it can't be that. And that has been the protocol for the last few months since this started I can't wear shoes because my skin has finally become so fragile and the spasms are so bad I have to wear these ridiculous foam Afos and have my legs double strapped with tensor bandages, I also have to have a ridiculous pillow strapped in between my thighs constantly.
Sometimes spasms cause a D which is troubling because I'm worried about my bones, lately at physiotherapy when doing stretches I start sweating the dysreflexia is so bad, I haven't sweat since my accident! Which leads me to a serious problem that is a great concert, I can no longer lay in bed anymore especially if I want to sleep the spasticity has just gotten worse and worse to the point where if I get in bed I am thrown around like a ragdoll left side to the right side legs up and down scraping against child is bashing the knees together constantly out a few times every hour like it used to. But I found a solution$10,000 leg braces that actually flex with the spasms so it's not so hard on the leg their spring loaded so once the spasm release my leg then go straight thanks to the braces, once these are on my legs actually calm down for whatever reason, but even if they don't I am Straight so I can at least get a few hours sleep. The problem is even though these braces are smart and are as flexible on the bone as possible, fact is my bones continue to get weaker and weaker I am genuinely worried about a break or fracture. But if I don't wear those braces I can't go in bed, it's physically dangerous for numerous reasons, it's impossible to sleep, and frankly it'll drive me to madness my body has control over me now and I feel like a complete useless bitch. But as I sit here right now I literally can't stop going dysreflexic it's a affecting my skin my hair standing on endmy blood pressure is going up and down cause and chills and headache. The left side of my brain is very painful and the back of my eye hurts quite a bit as well .
It's at least every 3 to 5 minutes it comes back in different intensities, I've taken two painkillers I gave and I couldn't take it hydromorphone. I'm not pissing myself, I'm not shitting myself the boys are in a safe position the only thing I can think of is a bad fracture. I have no bruising no signs, and sometimes my legs will move and spasm without causing it. I'm due to get a new bone density scan here soon. And I understand the standard protocol with my doctor is to go to the ER, but I go there they don't even take it seriously half them don't even know what it is. Then doublechecking my urine and prescribed antibiotics that I'm probably resistant two because I kept going to the ER, now I'm facing risk of dying from antibiotic resistant bugs as my last urine culture had basic bugs that were resistant to every oral antibiotic, turned superbugs. The good thing is I think I have found a solution it's probably temporary but it's good for now because once I start jumping into iv antibiotics it won't be long till I get you know "the" superbug and I won't even make it to my settlement to leave money behind.
I'm only four years post and it seems like everything has gotten worse, nerve pain to osteoporosis all of that. I basically have to stay indoors constantly now because of the dysreflexia, the rare time my friends get together and invite me out I can't go because I'm not going to get them check my balls and my ass etc. It's almost making me superstitious, just the ugly consistency with it. Maybe it finally is renal failure they've been through a lot when I used to just reflex void, into a condom catheter even when I started ICs I couldn't get someone to do it during the night and it still pushed urine out even with the pills. And the super pubic catheter hasn't been a bulletproof run either. And you know what I plug the catheter every other day to let the bladder fill up as much as I can and the second I start getting ad I pulled it out not safe but I hope to regain bladder function one day that requires a bladder that can hold urine
I've made all the changes that my body has basically forced upon me, I used to do bow care every other day for my own mental respect but also so that sometimes I could just go out with my friends for the night and they could throw me on the couch or something,and I'd be all right as long as they drain my leg bag. And it worked for the first three years, and then randomly I started going disflexic the day I did not do it like bad,after a lot of denial believing that wasn't the reason, then just plain stubbornness saying I'd rather die than do it every other day ( worthy of respect but obviously I couldn't commit weakness I know but it wasn't killing me just severely hurting). So now I do it every day, I take my bladder pills, I wear the boots every day, I put the stupid pillow in between my thighs every day, I go to the doctors, I go to the seating clinic, do the test at the urology office I follow the cripple (high comp quad) protocol now, I eat a fantastic diet measuring all my nutrients. But the relief is always temporary, which is infuriating because all of this requires me to expect more help and it greatly affects how much leniency in my schedule and what I can do! I make all the sacrifices including self-respect to no avail. The only thing I won't do is megadosing baclofin because I know that has implications on the body especially pertaining to recovery, and in a lot of clinical trials it's an exclusion criteria, I have always avoided pills but this life is basically forcing them down my throat and I despise that I do not want to be taking these and there's numerous that I apparently should be taken, and given the fact of my secondary complications being very severe The injury is basically trying to enforce that
I'm sorry to rant this isnt the first day truth be told it's been like this for the last three months so much dysreflexia that I just can't manage, I figure one thing out another thing comes up, some days it is non-stop all of us higher injuries knows how bad it is I will admit it's not the severe dysreflexia when your blood pressure you know quadruples you can't even open your eyes because they're going to explode but let's be honest if I had that for four hours straight I would be long dead even with my youth. Nonetheless I'm still experiencing all the symptoms just not in the extremely severe case,but there periodically consistent I can't stop it and of course yeah it hurts but it's driving me absolutely insane. Nerve pain is bad, and it can be very very bad,but constant bad AD completely overshadows it and apparently it's a whole hell of a lot more dangerous really hard on the body.
I literally don't know what to do there's no autonomic dysreflexia specialist to my understanding, I'm mean for the first time in four years I'm finally going to see an infectious disease specialist you know after a monthly symptom causing infection because of a seriously unlucky high-pressured neurogenic bladder since my injury probably should've seen him long ago, but now it's getting serious time to go see one frig doctors are no help, unless you want a pill even still they can be useless,often times I go to the ER and tell them what to do and know Iam much more informed with anything to do with spinal cord injury. Has anyone had this problem consistent uncontrollable undiagnosable autonomic dysreflexia what did you do? Do you just tolerate it and Cross your fingers, high dose on strong painkiller every day hope that numbs you enough!?
For god sake's it's been so bad these past months, with no help that my mother and I have had to have a long serious talk about a stroke protocol
i'm in quite the predicament
Sometimes spasms cause a D which is troubling because I'm worried about my bones, lately at physiotherapy when doing stretches I start sweating the dysreflexia is so bad, I haven't sweat since my accident! Which leads me to a serious problem that is a great concert, I can no longer lay in bed anymore especially if I want to sleep the spasticity has just gotten worse and worse to the point where if I get in bed I am thrown around like a ragdoll left side to the right side legs up and down scraping against child is bashing the knees together constantly out a few times every hour like it used to. But I found a solution$10,000 leg braces that actually flex with the spasms so it's not so hard on the leg their spring loaded so once the spasm release my leg then go straight thanks to the braces, once these are on my legs actually calm down for whatever reason, but even if they don't I am Straight so I can at least get a few hours sleep. The problem is even though these braces are smart and are as flexible on the bone as possible, fact is my bones continue to get weaker and weaker I am genuinely worried about a break or fracture. But if I don't wear those braces I can't go in bed, it's physically dangerous for numerous reasons, it's impossible to sleep, and frankly it'll drive me to madness my body has control over me now and I feel like a complete useless bitch. But as I sit here right now I literally can't stop going dysreflexic it's a affecting my skin my hair standing on endmy blood pressure is going up and down cause and chills and headache. The left side of my brain is very painful and the back of my eye hurts quite a bit as well .
It's at least every 3 to 5 minutes it comes back in different intensities, I've taken two painkillers I gave and I couldn't take it hydromorphone. I'm not pissing myself, I'm not shitting myself the boys are in a safe position the only thing I can think of is a bad fracture. I have no bruising no signs, and sometimes my legs will move and spasm without causing it. I'm due to get a new bone density scan here soon. And I understand the standard protocol with my doctor is to go to the ER, but I go there they don't even take it seriously half them don't even know what it is. Then doublechecking my urine and prescribed antibiotics that I'm probably resistant two because I kept going to the ER, now I'm facing risk of dying from antibiotic resistant bugs as my last urine culture had basic bugs that were resistant to every oral antibiotic, turned superbugs. The good thing is I think I have found a solution it's probably temporary but it's good for now because once I start jumping into iv antibiotics it won't be long till I get you know "the" superbug and I won't even make it to my settlement to leave money behind.
I'm only four years post and it seems like everything has gotten worse, nerve pain to osteoporosis all of that. I basically have to stay indoors constantly now because of the dysreflexia, the rare time my friends get together and invite me out I can't go because I'm not going to get them check my balls and my ass etc. It's almost making me superstitious, just the ugly consistency with it. Maybe it finally is renal failure they've been through a lot when I used to just reflex void, into a condom catheter even when I started ICs I couldn't get someone to do it during the night and it still pushed urine out even with the pills. And the super pubic catheter hasn't been a bulletproof run either. And you know what I plug the catheter every other day to let the bladder fill up as much as I can and the second I start getting ad I pulled it out not safe but I hope to regain bladder function one day that requires a bladder that can hold urine
I've made all the changes that my body has basically forced upon me, I used to do bow care every other day for my own mental respect but also so that sometimes I could just go out with my friends for the night and they could throw me on the couch or something,and I'd be all right as long as they drain my leg bag. And it worked for the first three years, and then randomly I started going disflexic the day I did not do it like bad,after a lot of denial believing that wasn't the reason, then just plain stubbornness saying I'd rather die than do it every other day ( worthy of respect but obviously I couldn't commit weakness I know but it wasn't killing me just severely hurting). So now I do it every day, I take my bladder pills, I wear the boots every day, I put the stupid pillow in between my thighs every day, I go to the doctors, I go to the seating clinic, do the test at the urology office I follow the cripple (high comp quad) protocol now, I eat a fantastic diet measuring all my nutrients. But the relief is always temporary, which is infuriating because all of this requires me to expect more help and it greatly affects how much leniency in my schedule and what I can do! I make all the sacrifices including self-respect to no avail. The only thing I won't do is megadosing baclofin because I know that has implications on the body especially pertaining to recovery, and in a lot of clinical trials it's an exclusion criteria, I have always avoided pills but this life is basically forcing them down my throat and I despise that I do not want to be taking these and there's numerous that I apparently should be taken, and given the fact of my secondary complications being very severe The injury is basically trying to enforce that
I'm sorry to rant this isnt the first day truth be told it's been like this for the last three months so much dysreflexia that I just can't manage, I figure one thing out another thing comes up, some days it is non-stop all of us higher injuries knows how bad it is I will admit it's not the severe dysreflexia when your blood pressure you know quadruples you can't even open your eyes because they're going to explode but let's be honest if I had that for four hours straight I would be long dead even with my youth. Nonetheless I'm still experiencing all the symptoms just not in the extremely severe case,but there periodically consistent I can't stop it and of course yeah it hurts but it's driving me absolutely insane. Nerve pain is bad, and it can be very very bad,but constant bad AD completely overshadows it and apparently it's a whole hell of a lot more dangerous really hard on the body.
I literally don't know what to do there's no autonomic dysreflexia specialist to my understanding, I'm mean for the first time in four years I'm finally going to see an infectious disease specialist you know after a monthly symptom causing infection because of a seriously unlucky high-pressured neurogenic bladder since my injury probably should've seen him long ago, but now it's getting serious time to go see one frig doctors are no help, unless you want a pill even still they can be useless,often times I go to the ER and tell them what to do and know Iam much more informed with anything to do with spinal cord injury. Has anyone had this problem consistent uncontrollable undiagnosable autonomic dysreflexia what did you do? Do you just tolerate it and Cross your fingers, high dose on strong painkiller every day hope that numbs you enough!?
For god sake's it's been so bad these past months, with no help that my mother and I have had to have a long serious talk about a stroke protocol
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