This is going to be a long story, sorry but please read so you understand. And can maybe explain why this is happening or what I'm doing wrong
OK so I was injured in 2012 at first I didn't really have spasms as my injury was very severe, pretty bad nerve pain but I never got AD. First time I did was near the second year I had been sitting on my balls all day move them went away. Now it's been 3 1/2 years since. For the first year I used a Foley catheter no problems just didn't want to damage my penis so I switched to a condom catheter I reflex voided all day never had any AD even when I got infections. Now I had other problems associated with the infections flank pain, nausea and I obviously had to get them treated. Eventually I got bladder stones so I got that removed and I started doing ics every four hours and taking meds for bladder spasms. But I still wore a condom catheter as urine still came out the penis in between ICs . Again AD barely had it if I did was very minor maybe a little chills kinda felt just not right. The first time I had actual serious AD I had a problem with Cialis when they injected my shaft I thought myBrain was going to explode out of my ear and I was going to have a stroke my heart was pounding bp went way up the hospital wasn't prepared for it so I had to just tough it out..
So I don't know maybe 2 1/2 years I get tired doing ICs every four hours and the whole touching etc. Truth be told even after over 2 years of reflex voiding with no AD for some reason I was starting to get minor Ad when voiding through the penis so I get a suprapubic at this time spasms are picking up first I'd jut be my legs jumping up a little bit in bed kind of throwing my position off when laying down not great but it is what it is and I started 40 mg of baclofen because the bad position started hurting my back. At first with the new catheter the spasms went down everything was great no more infections, which was pretty substantial as I have had many at this point and antibiotic resistance was a problem.now I should mention at this point all the bowl care and all movements I never never caused AD I didn't feel anything which was great because when they were doing a touch I just shut my eyes and thought about something else pretend it wasn't happening...
But things started to change eventually the spasms started coming back and weren't just my legs jumping they were now actually extremely violent, and at certain times my entire body would start to vibrate enough to eventually remove screws from my bed the floor would make noise from my metal bed frame. And they were also working their way up my body to my handeven to my shoulders where I had control. But then I started getting serious AD anytime I voided through penis. And even worse every time they did a touch for bowel care I got bad AD we're talking strong chills, nausea's head and the heart pounding. Little by little it got worse all of it. Now Ad is horrible with touches but even when the stool is moving not caused by touches. And not sometimes,l mean every time!! I can tell if I'm about to have an accident because I start getting sick, every touch exasperate the AD when trying to have a movement so you have to be very careful not to do them at the same time, which is very difficult. these are things that never caused disreflexia before but now it's inevitable. The spasms have now become relentless every time In my commode it's dangerous I can be thrown out of the thing. It's even happened in my chair that's fitted for my body. I have to strap my legs down in my chair now to keep them from sticking out and shaking, never used to spasm in my chair. In bed is becoming a serious problem I have a hard time sleeping just from not being able to move around, but now my legs freaking out all night and I don't know what to do with my legs to keep them in a reasonable position. I bought a pair of $10,000 braces that move with the spasms, prevent contractures and drop foot! The thing is once I put these on they keep my legs straight but my spasms literally fight against them so much even with all the padding they cause bedsores and adhesions. I've upped my baclofen a drug that I seem immune too, they also started me on Tiatzine for nighttime doesn't stop them and it only lasts two hours maybe three before they're back full on. Often I have to take diazepam too! this is a lot of drugs that affect me mentally and cognitively and don't even help me sleep. And even with all these combinations they still continue, these drug also prevent enrollment in clinical trial. I'm looking into getting a tilt table where I'm going to start standing a lot more every day with vibration plate.
OK so progressively voiding through the penis, bowel care, bowel movements all of it triggers very bad AD. But I thought that it couldn't progress anymore. Well I was mistaken I do bowel care every other day, I need a day off from it in between I cherish that I really do I can't stand bowel care. But on the days that I don't do it recently every time I'm going dysreflexic not every now and then almost constantly. I avoid painkillers like the Plague but seems Hydromorphone is the only thing that stops the A.D. And I ruled that it is to do with stool in the colon because A few times I gave in and tried Bp and it stopped it.i've been doing BC every other day for over three years no problem but now my body is literally trying to force me to do it every day. Not to mention the tremendous dysreflexia bowel care causes when I do do it, every movement every touch even the suppository. I've been toughing that out since the AD started Becoming so common, but it's more than just pain and danger of AD, The process of bowel care really deeply bothers me, when I wake up and it's that day I'm just disgusted that's what I mean I really cherish my day off there's no Escape from fucking dependency but it is a relief, even if it's just a partial one .And even more disturbing I'm starting to get Dysreflexia from spasms that are strong enough I can't let that progress but based on the history of my injury shows me that it probably is going to .
In regards to my doctor, dysreflexia she tells me to go to the ER, of which the one time I went for dyslexia they did nothing it comes and it goes all day. Stool softener's laxatives obviously don't affect the A.D. caused by touches but for whatever reason even when it's like liquid the movements still cause it too and it turns a 45 minute procedure to a three hour one often still causing accidents . For the spasms she just keeps adding more and more drug that are affecting me cognitively and she won't try CBD, Botox did nothing and is too expensive it'll drain my AB fund. Baclofen pumps haven't worked for people with less violent spasms than me and my history with that drug tells me that my body just adapt to it after a few days, plus it hinders recovery and keeps us out of clinical trials. On one positive note the reflex voiding to the penis seems to be under control with the new larger catheter . But now when I do get an infection it's never a simple infection my fever starts spiking right away and as the scan show I had inflammation in the kidney just because I didn't quite hit my water intake a few days. I spent Christmas eve in the hospital, and Christmas Day bedridden fighting a fever .
Since all of this started progressing I really went hard I only drink water, and coconut/cinnamon chai tea no sugar nothing. For at least one liter I add lemon or pure organic cranberry juice.I drink three all organic vegetable smoothies with black beans and nuts and seeds throughout the day. Breakfast is Organic blueberries with natural yogurt and plain oats. Lunch and snacks are just smoothies dinner is either whole wheat pasta, Organic tomato sauce with good quality beef, organic chicken stirfry lots of veggies, or fresh salmon nor organic chicken with sweet potato or brown rice. My supplements are the highest quality vegan vitamin D spray, liquid B vitamin complex, liquid vitamin K2, liquid zinc, pharmaceutical grade fish oil I also eat one large cloves of fresh garlic a day. I stretch morning and night spend 30 minutes a day on my stomach , And go to physiotherapy twice a week. Obviously I feel tremendous health benefits from such a strict diet, but because of the injury it's not as affected I should practically be glowing with immune support, Strong bones etc. but if I slip up even for a few days I'll get an infection and it won't be minor as I explained... and the dysreflexia still happens many times throughout the day, continuously through bowel care and as I said seems to be progressing to happen when I spasm. I'm taking so many drugs for my bladder and spasms that I won't touch Lyricato help with the nerve pain I just grit my teeth, something I do notice is getting adequate magnesium Does help in that regard!!
My diet hasn't always been this in check but it's never been bad, easily always better than the average person. I've always only drink water, I've always kept up with my physio so I literally don't understand how my spasms continue to grow and the dysreflexia continues to get worse and be caused by things that never caused it before. I'm on 40 mils of baclofen and five mg of diazepam already today and because of my handshaking I could barely type this. Not to mention it wasn't bowel care today so I had to take a painkiller because the A.D. wouldn't stop since I got in my chair. WTF !!
What is going on with my dysreflexia
OK so I was injured in 2012 at first I didn't really have spasms as my injury was very severe, pretty bad nerve pain but I never got AD. First time I did was near the second year I had been sitting on my balls all day move them went away. Now it's been 3 1/2 years since. For the first year I used a Foley catheter no problems just didn't want to damage my penis so I switched to a condom catheter I reflex voided all day never had any AD even when I got infections. Now I had other problems associated with the infections flank pain, nausea and I obviously had to get them treated. Eventually I got bladder stones so I got that removed and I started doing ics every four hours and taking meds for bladder spasms. But I still wore a condom catheter as urine still came out the penis in between ICs . Again AD barely had it if I did was very minor maybe a little chills kinda felt just not right. The first time I had actual serious AD I had a problem with Cialis when they injected my shaft I thought myBrain was going to explode out of my ear and I was going to have a stroke my heart was pounding bp went way up the hospital wasn't prepared for it so I had to just tough it out..
So I don't know maybe 2 1/2 years I get tired doing ICs every four hours and the whole touching etc. Truth be told even after over 2 years of reflex voiding with no AD for some reason I was starting to get minor Ad when voiding through the penis so I get a suprapubic at this time spasms are picking up first I'd jut be my legs jumping up a little bit in bed kind of throwing my position off when laying down not great but it is what it is and I started 40 mg of baclofen because the bad position started hurting my back. At first with the new catheter the spasms went down everything was great no more infections, which was pretty substantial as I have had many at this point and antibiotic resistance was a problem.now I should mention at this point all the bowl care and all movements I never never caused AD I didn't feel anything which was great because when they were doing a touch I just shut my eyes and thought about something else pretend it wasn't happening...
But things started to change eventually the spasms started coming back and weren't just my legs jumping they were now actually extremely violent, and at certain times my entire body would start to vibrate enough to eventually remove screws from my bed the floor would make noise from my metal bed frame. And they were also working their way up my body to my handeven to my shoulders where I had control. But then I started getting serious AD anytime I voided through penis. And even worse every time they did a touch for bowel care I got bad AD we're talking strong chills, nausea's head and the heart pounding. Little by little it got worse all of it. Now Ad is horrible with touches but even when the stool is moving not caused by touches. And not sometimes,l mean every time!! I can tell if I'm about to have an accident because I start getting sick, every touch exasperate the AD when trying to have a movement so you have to be very careful not to do them at the same time, which is very difficult. these are things that never caused disreflexia before but now it's inevitable. The spasms have now become relentless every time In my commode it's dangerous I can be thrown out of the thing. It's even happened in my chair that's fitted for my body. I have to strap my legs down in my chair now to keep them from sticking out and shaking, never used to spasm in my chair. In bed is becoming a serious problem I have a hard time sleeping just from not being able to move around, but now my legs freaking out all night and I don't know what to do with my legs to keep them in a reasonable position. I bought a pair of $10,000 braces that move with the spasms, prevent contractures and drop foot! The thing is once I put these on they keep my legs straight but my spasms literally fight against them so much even with all the padding they cause bedsores and adhesions. I've upped my baclofen a drug that I seem immune too, they also started me on Tiatzine for nighttime doesn't stop them and it only lasts two hours maybe three before they're back full on. Often I have to take diazepam too! this is a lot of drugs that affect me mentally and cognitively and don't even help me sleep. And even with all these combinations they still continue, these drug also prevent enrollment in clinical trial. I'm looking into getting a tilt table where I'm going to start standing a lot more every day with vibration plate.
OK so progressively voiding through the penis, bowel care, bowel movements all of it triggers very bad AD. But I thought that it couldn't progress anymore. Well I was mistaken I do bowel care every other day, I need a day off from it in between I cherish that I really do I can't stand bowel care. But on the days that I don't do it recently every time I'm going dysreflexic not every now and then almost constantly. I avoid painkillers like the Plague but seems Hydromorphone is the only thing that stops the A.D. And I ruled that it is to do with stool in the colon because A few times I gave in and tried Bp and it stopped it.i've been doing BC every other day for over three years no problem but now my body is literally trying to force me to do it every day. Not to mention the tremendous dysreflexia bowel care causes when I do do it, every movement every touch even the suppository. I've been toughing that out since the AD started Becoming so common, but it's more than just pain and danger of AD, The process of bowel care really deeply bothers me, when I wake up and it's that day I'm just disgusted that's what I mean I really cherish my day off there's no Escape from fucking dependency but it is a relief, even if it's just a partial one .And even more disturbing I'm starting to get Dysreflexia from spasms that are strong enough I can't let that progress but based on the history of my injury shows me that it probably is going to .
In regards to my doctor, dysreflexia she tells me to go to the ER, of which the one time I went for dyslexia they did nothing it comes and it goes all day. Stool softener's laxatives obviously don't affect the A.D. caused by touches but for whatever reason even when it's like liquid the movements still cause it too and it turns a 45 minute procedure to a three hour one often still causing accidents . For the spasms she just keeps adding more and more drug that are affecting me cognitively and she won't try CBD, Botox did nothing and is too expensive it'll drain my AB fund. Baclofen pumps haven't worked for people with less violent spasms than me and my history with that drug tells me that my body just adapt to it after a few days, plus it hinders recovery and keeps us out of clinical trials. On one positive note the reflex voiding to the penis seems to be under control with the new larger catheter . But now when I do get an infection it's never a simple infection my fever starts spiking right away and as the scan show I had inflammation in the kidney just because I didn't quite hit my water intake a few days. I spent Christmas eve in the hospital, and Christmas Day bedridden fighting a fever .
Since all of this started progressing I really went hard I only drink water, and coconut/cinnamon chai tea no sugar nothing. For at least one liter I add lemon or pure organic cranberry juice.I drink three all organic vegetable smoothies with black beans and nuts and seeds throughout the day. Breakfast is Organic blueberries with natural yogurt and plain oats. Lunch and snacks are just smoothies dinner is either whole wheat pasta, Organic tomato sauce with good quality beef, organic chicken stirfry lots of veggies, or fresh salmon nor organic chicken with sweet potato or brown rice. My supplements are the highest quality vegan vitamin D spray, liquid B vitamin complex, liquid vitamin K2, liquid zinc, pharmaceutical grade fish oil I also eat one large cloves of fresh garlic a day. I stretch morning and night spend 30 minutes a day on my stomach , And go to physiotherapy twice a week. Obviously I feel tremendous health benefits from such a strict diet, but because of the injury it's not as affected I should practically be glowing with immune support, Strong bones etc. but if I slip up even for a few days I'll get an infection and it won't be minor as I explained... and the dysreflexia still happens many times throughout the day, continuously through bowel care and as I said seems to be progressing to happen when I spasm. I'm taking so many drugs for my bladder and spasms that I won't touch Lyricato help with the nerve pain I just grit my teeth, something I do notice is getting adequate magnesium Does help in that regard!!
My diet hasn't always been this in check but it's never been bad, easily always better than the average person. I've always only drink water, I've always kept up with my physio so I literally don't understand how my spasms continue to grow and the dysreflexia continues to get worse and be caused by things that never caused it before. I'm on 40 mils of baclofen and five mg of diazepam already today and because of my handshaking I could barely type this. Not to mention it wasn't bowel care today so I had to take a painkiller because the A.D. wouldn't stop since I got in my chair. WTF !!
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