Please read:
My story with Reflex Sympathetic Dystrophy...
I broke my heel when I was six (1988), after being pushed off the bars in gymnastics. RSD just about always occurs after an injury of some sort. People have gotten RSD after paper cuts, broken bones, sprains, and even things like bronchitis or heart attacks. I was one of the unlucky individuals. No one had ever seen RSD in a six year old. I was misdiagnosed with plantar fasciitis (bone spurs), for five years or until I was 11 years old. This caused me to get so bad, that I was wheelchair-bound and unable to have a normal childhood.
When I was finally diagnosed, several tests had to be done.
Nerve conduction studies: tests how the nerve is working and if it is working correctly.
Examining the time it takes for messages to get from one nerve to the next by using electromyography (EMG).
Blood tests, bone density tests, testing the patients sensitivity and reaction to touch and movement, and many other tests, but those are the main ones.
My doctor asked me my symptoms, and he examined the physical symptoms noticeable to the naked eye.
There is no known cure for RSD. More women are affected then men. Age range of occurrence is between the ages of 30-70 years of age. At the time I was diagnosed, I was the youngest known person to have RSD. There are now three year olds who are becoming affected with RSD.
I could not walk, stand, run, or play. After spending 3 weeks inpatient in the hospital, I was able to walk and run and had limited pain. Two weeks after being let out of the hospital, I was going back in, but this time to CHLA (Childrens Hospital Los Angeles).
I spent a month inpatient. Leaving the hospital once again able to walk, I went into my first remission. I was pain free and able to be normal for a full 4 years.
After I was in remission for four years, I sprained my right arm. Immediately my RSD came back. It was now in my arm. About four days later, it spread back down into my left leg (the original). It was ravishing my body, spreading literally from head to toe. I could not use my arms, my legs or move my neck and back. I was basically unable to do anything by myself. I completely relied on someone to take care of me. I was admitted into the hospital again. This time at Lucile Salter Packard Childrens Hospital at Stanford. I shocked the doctors, nurses, and professors of medicine with my illness. They were baffled, unable to believe their eyes at what they were looking at and why was it so bad. They took pictures, ran a crapload of tests, literally put me through hell to figure out why this was happening to me. I stayed at Stanford for approximately two months. Physical therapy, occupational therapy, lidocaine trials, so many meds I lost count, surgeries placing epidural catheters to deliver numbing medication for weeks at a time, and many other horrible things. To make an extremely long story shorter, I was in and out of Stanford for three years following the initial visit. Staying inpatient at months at a time. Finally, I got so bad, my doctors threatened to amputate my leg. I fought this, yelled and screamed at them for even suggesting it. I was scheduled for surgery to remove part of my leg right before Christmas 1999. I told them, something has to get worse before it gets better and to just wait. I didnt want to lose my leg and have to go through more fucked up shit. I had, had enough of everything. The day I was supposed to go into surgery, my doctors came to see me beforehand. They found me attempting to walk despite the fact I kept falling. They listened to me and canceled my surgery. Over the following three weeks, I progressed in my walking and although I had pain, I fought my way back onto my feet. All my doctors were stunned and shocked at what I was doing. They couldnt explain medically, so they called me a walking miracle. Its literally written in my files, a walking miracle. I have the worst known case of RSD and, yet I am basically performing my own miracle in front of 20+ top specialists. That may be extremely bold and down right vain to say, but if I had not gotten the scare of my life of losing my leg, where would I be now? I left Stanford Childrens Hospital, walking and skipping like a real child. It brings tears to my eyes recalling all of this. I went into remission for almost a year.
In August of 2000, I was kicked in my original injury spot. Now this threw me into my worst flare up any doctor had ever seen. My leg was as black as a black leather coat, and I wish I had the pictures to show you because it is really the craziest, most bizarre sight. This time I was admitted into Kaiser Permanente Hospital in San Diego. Again, here I go baffling the doctors with my bizarre case of RSD. They immediately tried everything that Stanford had already tried. They concluded that maybe it was time to try the more drastic approach for treatment. My main doctor suggested a Spinal Column Stimulator. I had a trial placement the following day and sent home the next. Over the following week, I wrote down how it helped my pain. It actually worked, and I started seeing improvement about three days after it was placed. I went into surgery a week later for the permanent placement. After surgery, I stayed in the hospital for a day and then sent home. Three full months of physical therapy and learning how to walk again, I was in full remission according to my doctors. This was in the year 2000, and I had very little pain for a full 4 and a half years.
In the middle of July 2005, I injured my left shoulder after falling off of my bike. I didnt experience any pain for two days, and then all of a sudden I wake one morning and my hand and arm all the way up to my shoulder was purple and inflamed and in the most excruciating pain. I knew right then and there, it was my disease. I left home to go back to Stanford because they were my closest doctors and knew more about me then any other physician I had ever seen. I was immediately admitted into Stanford University Hospital. My doctors cried when they saw me in the state I was in, after knowing I was in remission and having a better life then what was originally expected. They started out with Stellate Ganglia blocks for my arm, physical therapy, and surgery to fix my machine so that the pain relief in my legs would be stronger. I was inpatient from the end of July to August 19th. I went to my brothers for two days, and everything seemed fine. I woke on the 21st, feeling strange and unaware of my surroundings. I was breathing shallow and weak. I couldnt move or talk. I didnt know what was going on. My mom called my doctors and they had told to her to get me to the nearest hospital. It was obvious that I was having a major drug counter-reaction and if I didnt get help immediately, I wouldnt make it out of it. We got to the hospital and my mom carried me into the ER. They took me back into the critical care area of the ER and had to intubate me so that I could breathe. I was hooked up to many machines trying to keep me alive. A day later, I was airlifted to Stanford again. I stayed in the critical care unit for the following two days. My doctors kept me in the hospital to regulate my medicines. About a week later, my pain was so bad that my legs were now affected. My anesthesiologists decided that it was time for another machine to help my arms. After going through that surgery, I had physically had enough. My body was rejecting everything. I couldnt eat, sleep and somehow contracted mono all in the midst of things. I stayed until September 20th and then was transferred to Salt Lake City Utah to a physical/orthopedic rehabilitation facility. I moved my rehabilitation to Utah to be closer to my mom. I started physical rehabilitation as soon as I got there. Teaching my arms and legs to work properly again, I stayed inpatient for approximately a month. They helped to continue regulating my medication and before I left gave me one final stellate ganglia block. I left there on the 20th of October, to go to my moms in Wyoming. Since then I have been doing quite well. Gradually gaining a lot of the strength back in my arms and legs, and learning to deal with a normal life again. I have had two procedures since being discharged, and I am hoping that this is the beginning of another remission. I have to take over 7 different types of meds to keep me out of the hospital, but it's better then losing an arm or leg...life is getting better finally and smiles are now breakin through...by the way this story was shortened because otherwise it would be a book on here...hahaha
I've been wanting to tell everyone about this for along time...contemplating whether or not people should know this about me...well after sharing my story with someone who is absolutely amazing, and who has sparked something wonderful in me, I believe it is now time...welcome to me..my world...
A spot I've found here in Wyoming where I can go n hide...
This is what there is to do in Wyoming...
Me mum n me...
Say good morning PoopStain...hehe
Andre, my kitty and what he does best...hims likes to nurse on Raven...hehehe
He has gotten soooo big...and he's as soft as a fox!
Ripper enjoys chewing...
And rockin in a chair next to his mum...
I think this may be the biggest update ever...well there you go...this is my life...for now...
~ps please visit
RSD Support
RSD Hope
Go say hi to Tankytank and welcome her to the site....she is awesome and the most beautiful and
amazing girl ever...I adore her to pieces!!!
Check out my insane little mind....to read more of my deeper thoughts go HERE
My story with Reflex Sympathetic Dystrophy...
I broke my heel when I was six (1988), after being pushed off the bars in gymnastics. RSD just about always occurs after an injury of some sort. People have gotten RSD after paper cuts, broken bones, sprains, and even things like bronchitis or heart attacks. I was one of the unlucky individuals. No one had ever seen RSD in a six year old. I was misdiagnosed with plantar fasciitis (bone spurs), for five years or until I was 11 years old. This caused me to get so bad, that I was wheelchair-bound and unable to have a normal childhood.
When I was finally diagnosed, several tests had to be done.
Nerve conduction studies: tests how the nerve is working and if it is working correctly.
Examining the time it takes for messages to get from one nerve to the next by using electromyography (EMG).
Blood tests, bone density tests, testing the patients sensitivity and reaction to touch and movement, and many other tests, but those are the main ones.
My doctor asked me my symptoms, and he examined the physical symptoms noticeable to the naked eye.
There is no known cure for RSD. More women are affected then men. Age range of occurrence is between the ages of 30-70 years of age. At the time I was diagnosed, I was the youngest known person to have RSD. There are now three year olds who are becoming affected with RSD.
I could not walk, stand, run, or play. After spending 3 weeks inpatient in the hospital, I was able to walk and run and had limited pain. Two weeks after being let out of the hospital, I was going back in, but this time to CHLA (Childrens Hospital Los Angeles).
I spent a month inpatient. Leaving the hospital once again able to walk, I went into my first remission. I was pain free and able to be normal for a full 4 years.
After I was in remission for four years, I sprained my right arm. Immediately my RSD came back. It was now in my arm. About four days later, it spread back down into my left leg (the original). It was ravishing my body, spreading literally from head to toe. I could not use my arms, my legs or move my neck and back. I was basically unable to do anything by myself. I completely relied on someone to take care of me. I was admitted into the hospital again. This time at Lucile Salter Packard Childrens Hospital at Stanford. I shocked the doctors, nurses, and professors of medicine with my illness. They were baffled, unable to believe their eyes at what they were looking at and why was it so bad. They took pictures, ran a crapload of tests, literally put me through hell to figure out why this was happening to me. I stayed at Stanford for approximately two months. Physical therapy, occupational therapy, lidocaine trials, so many meds I lost count, surgeries placing epidural catheters to deliver numbing medication for weeks at a time, and many other horrible things. To make an extremely long story shorter, I was in and out of Stanford for three years following the initial visit. Staying inpatient at months at a time. Finally, I got so bad, my doctors threatened to amputate my leg. I fought this, yelled and screamed at them for even suggesting it. I was scheduled for surgery to remove part of my leg right before Christmas 1999. I told them, something has to get worse before it gets better and to just wait. I didnt want to lose my leg and have to go through more fucked up shit. I had, had enough of everything. The day I was supposed to go into surgery, my doctors came to see me beforehand. They found me attempting to walk despite the fact I kept falling. They listened to me and canceled my surgery. Over the following three weeks, I progressed in my walking and although I had pain, I fought my way back onto my feet. All my doctors were stunned and shocked at what I was doing. They couldnt explain medically, so they called me a walking miracle. Its literally written in my files, a walking miracle. I have the worst known case of RSD and, yet I am basically performing my own miracle in front of 20+ top specialists. That may be extremely bold and down right vain to say, but if I had not gotten the scare of my life of losing my leg, where would I be now? I left Stanford Childrens Hospital, walking and skipping like a real child. It brings tears to my eyes recalling all of this. I went into remission for almost a year.
In August of 2000, I was kicked in my original injury spot. Now this threw me into my worst flare up any doctor had ever seen. My leg was as black as a black leather coat, and I wish I had the pictures to show you because it is really the craziest, most bizarre sight. This time I was admitted into Kaiser Permanente Hospital in San Diego. Again, here I go baffling the doctors with my bizarre case of RSD. They immediately tried everything that Stanford had already tried. They concluded that maybe it was time to try the more drastic approach for treatment. My main doctor suggested a Spinal Column Stimulator. I had a trial placement the following day and sent home the next. Over the following week, I wrote down how it helped my pain. It actually worked, and I started seeing improvement about three days after it was placed. I went into surgery a week later for the permanent placement. After surgery, I stayed in the hospital for a day and then sent home. Three full months of physical therapy and learning how to walk again, I was in full remission according to my doctors. This was in the year 2000, and I had very little pain for a full 4 and a half years.
In the middle of July 2005, I injured my left shoulder after falling off of my bike. I didnt experience any pain for two days, and then all of a sudden I wake one morning and my hand and arm all the way up to my shoulder was purple and inflamed and in the most excruciating pain. I knew right then and there, it was my disease. I left home to go back to Stanford because they were my closest doctors and knew more about me then any other physician I had ever seen. I was immediately admitted into Stanford University Hospital. My doctors cried when they saw me in the state I was in, after knowing I was in remission and having a better life then what was originally expected. They started out with Stellate Ganglia blocks for my arm, physical therapy, and surgery to fix my machine so that the pain relief in my legs would be stronger. I was inpatient from the end of July to August 19th. I went to my brothers for two days, and everything seemed fine. I woke on the 21st, feeling strange and unaware of my surroundings. I was breathing shallow and weak. I couldnt move or talk. I didnt know what was going on. My mom called my doctors and they had told to her to get me to the nearest hospital. It was obvious that I was having a major drug counter-reaction and if I didnt get help immediately, I wouldnt make it out of it. We got to the hospital and my mom carried me into the ER. They took me back into the critical care area of the ER and had to intubate me so that I could breathe. I was hooked up to many machines trying to keep me alive. A day later, I was airlifted to Stanford again. I stayed in the critical care unit for the following two days. My doctors kept me in the hospital to regulate my medicines. About a week later, my pain was so bad that my legs were now affected. My anesthesiologists decided that it was time for another machine to help my arms. After going through that surgery, I had physically had enough. My body was rejecting everything. I couldnt eat, sleep and somehow contracted mono all in the midst of things. I stayed until September 20th and then was transferred to Salt Lake City Utah to a physical/orthopedic rehabilitation facility. I moved my rehabilitation to Utah to be closer to my mom. I started physical rehabilitation as soon as I got there. Teaching my arms and legs to work properly again, I stayed inpatient for approximately a month. They helped to continue regulating my medication and before I left gave me one final stellate ganglia block. I left there on the 20th of October, to go to my moms in Wyoming. Since then I have been doing quite well. Gradually gaining a lot of the strength back in my arms and legs, and learning to deal with a normal life again. I have had two procedures since being discharged, and I am hoping that this is the beginning of another remission. I have to take over 7 different types of meds to keep me out of the hospital, but it's better then losing an arm or leg...life is getting better finally and smiles are now breakin through...by the way this story was shortened because otherwise it would be a book on here...hahaha
I've been wanting to tell everyone about this for along time...contemplating whether or not people should know this about me...well after sharing my story with someone who is absolutely amazing, and who has sparked something wonderful in me, I believe it is now time...welcome to me..my world...
A spot I've found here in Wyoming where I can go n hide...
This is what there is to do in Wyoming...
Me mum n me...
Say good morning PoopStain...hehe
Andre, my kitty and what he does best...hims likes to nurse on Raven...hehehe
He has gotten soooo big...and he's as soft as a fox!
Ripper enjoys chewing...
And rockin in a chair next to his mum...
I think this may be the biggest update ever...well there you go...this is my life...for now...
~ps please visit
RSD Support
RSD Hope
Go say hi to Tankytank and welcome her to the site....she is awesome and the most beautiful and
amazing girl ever...I adore her to pieces!!!
Check out my insane little mind....to read more of my deeper thoughts go HERE
VIEW 25 of 44 COMMENTS
sparkly_spike:
I added you on LJ...hope you don't mind, I don't have a lot of interesting things to say but I wanna get to know yew xxxxx
jane:
Aw,you look just like your Mommy.