So anyone who has CRPS will likely tell you that they also have a weak immune system. One of the things I struggle with, and have for years, are staph infections. Usually these occur under my arms, and let me tell you, those things are PAINFUL! Once I can tell I'm getting one, I have some prescription antibiotic cream that I start, and hopefully I can stop it before it gets so bad that I have to get it opened, drained, and it's gross, etc.
ANYWAY, I have started getting a sores in my mouth on a somewhat frequent basis. These things are called canker sores, and while I don't think they are the same thing, I think they are related. (No medical training here, but they feel the same, and look similar). The last one that I had covered the entire under side of one side of my tongue. I could barely eat for a week. Of course this was a week that I was supposed to teach a class at my office too.
Just wondering if anyone has had a similar experience, or if it's just me.
Saturday, November 4, 2017
Flare, Oh My!
So I have a hot tub. I love my hot tub. My hot tub used to make me feel wonderful. Some days my hot tub still relaxes me and makes me feel wonderful. Unfortunately, recently my hot tub has also begun to produce pain flares in my feet and legs. For anyone who doesn't understand what a CRPS flare feels like, have you ever had hot grease spill on your hand? A CRPS flare feels kind of like that sensation after the initial first burst of pain. Its kind of like that burning simmer that you cannot cool down and you cannot escape from, but you really wish you could. You try in vain to move in a way to alleviate the pain, but no matter which way you turn, or which position you try, the pain is always there. Unlike the pain from a stove burn, there is no dissipation. The pain does not taper off and no ointment gives you relief.
I got into the hot tub a few nights ago hoping it would help relax and make me feel better. After just a few minutes, I knew I was in trouble. I exited the hot tub and got into the shower. I was immensely pleased that I have a shower chair that allows me to sit down because I could not hold myself up on my feet. I cried in the shower where no one could see me. I did manage to get myself out and dressed, and then went and crawled into my husband's lap. (My happy place).
I wish someone understood the reason behind this condition. I wish there were more research dollars being spent finding a cure, or at the least some real treatments. I guess until there are, I will continue to push on as best as I can. I do believe that we are not given challenges we are not able to overcome, but some days I do pray harder for guidance and assistance because I'm not sure how much longer before I fall.
I got into the hot tub a few nights ago hoping it would help relax and make me feel better. After just a few minutes, I knew I was in trouble. I exited the hot tub and got into the shower. I was immensely pleased that I have a shower chair that allows me to sit down because I could not hold myself up on my feet. I cried in the shower where no one could see me. I did manage to get myself out and dressed, and then went and crawled into my husband's lap. (My happy place).
I wish someone understood the reason behind this condition. I wish there were more research dollars being spent finding a cure, or at the least some real treatments. I guess until there are, I will continue to push on as best as I can. I do believe that we are not given challenges we are not able to overcome, but some days I do pray harder for guidance and assistance because I'm not sure how much longer before I fall.
Tuesday, October 24, 2017
Rilley came home!
Ok, so strictly speaking, Rilley did not come home on his own. A few days ago, a very nice man saw a flyer I had put up at a local store with Rilley's picture and called to let me know he was at his house. I was at work at the time. I have never driven home so happy or scared in my life! I was so scared he would be gone by the time I go there. He wasn't and now he is home. I will never know the story of what actually happened to him in that week, but he's home now and that's all that matters.
This week has been very challenging with the ups and downs. I am so very grateful that I have my dog back. He is a great source of comfort and stability. His presence brings me peace. I am walking with him a bit more just to keep him in sight, and that's difficult for me, but I wouldn't have it any other way. I will struggle through the pain.
I find myself sitting more frequently in the last week. I cannot maintain a standing position for even the few minutes I could before. I have long since perfected the bounce from one foot to the other. I do often wonder what other people think of me when they see the bounce. Do they think I'm not paying attention to them, or that I just don't have the ability to stand still? I wonder if they think I'm detoxing off some medication or if they attribute my movements to an illness? I know that it has to be noticeable. anyway, these are the questions I think about.
I ruined a cake last night. Bubbled right over the pan because I filled the pan too close to the top. I knew better when I did it, but I was distracted by my book on tape. Does anyone else ever get distracted like that? I had once heck of a mess to clean up. Good times.
This week has been very challenging with the ups and downs. I am so very grateful that I have my dog back. He is a great source of comfort and stability. His presence brings me peace. I am walking with him a bit more just to keep him in sight, and that's difficult for me, but I wouldn't have it any other way. I will struggle through the pain.
I find myself sitting more frequently in the last week. I cannot maintain a standing position for even the few minutes I could before. I have long since perfected the bounce from one foot to the other. I do often wonder what other people think of me when they see the bounce. Do they think I'm not paying attention to them, or that I just don't have the ability to stand still? I wonder if they think I'm detoxing off some medication or if they attribute my movements to an illness? I know that it has to be noticeable. anyway, these are the questions I think about.
I ruined a cake last night. Bubbled right over the pan because I filled the pan too close to the top. I knew better when I did it, but I was distracted by my book on tape. Does anyone else ever get distracted like that? I had once heck of a mess to clean up. Good times.
Thursday, October 12, 2017
The Unthinkable
This morning my dog Rilley has been missing for about 36 hours. I have had Rilley for almost 8 years. Rilley is the best dog on the planet. He passed the therapy dog test. He is loving and compassionate to everyone he meets. You can't not love Rilley. We were not able to follow through with our therapy plans due to my illness, but he has proven to be the best therapy for me over the last 5 years. He has been my constant rock and source of strength. I have cried into his neck so many times. I am praying so fervently that when I get home from work, he will be sitting on the front porch waiting for me. I lost my doberman this spring in a freak accident. It was gut wrenching and painful. Losing them both within a year would border on cruel. I'm going to continue to think positive on this for a while. I waiting for you to come home dude....
Friday, October 6, 2017
Waking Up and Pushing Through
Waking up is not the difficult part of the morning. I wake up several times a night now. I have for the last few years. Never had a problem sleeping before this condition, but it seems to be a part of my life now. No, the issue is with getting myself out of the bed. I am a terrible snoozer. Anyone else have this issue? My spouse not so much. He is not a big sleeper. He has never been an 8 hour person. Me, I need my 8. 7 minimum. Without that, I am a do not look at me, do not joke with me, I will burn you with my death stare individual.
My issue is with my job. I am supposed to occasionally change my hours and arrive for work at an earlier time. Yes, I do get to go home earlier, but it still means I have to get up at an unnaturally early hour. Today was that day. I managed to not snooze today in some weird attempt at respect for my sleeping spouse, but the struggle is real people!! Combat that with the fact that I am having a pain flare in my feet this week, and we have a recipe for an unpleasant work day. I wish I had words of wisdom, a great motto that I could flash on that would perk me up or bring a spring to my step, but ya know what? My memory is just not what it used to be either! That's another sneaky side effect of CRPS, you can't remember anything! My desk looks like the marketing campaign for Post-it notes. I should buy stock. If I had a motto, it would have to be permanently tattooed on the back of my hand if I were to have any hope of being able to quote it.
Ok, so I'm rambling a little. Must be the hour. Sorry dear reader. I will conclude by saying that at least we are still here, still warbling along this crazy ride, and for that I am thankful. I know that while it may have been difficult, I was able to get out of that bed this morning, and while each step may be painful, I'm still on my feet. Here's to a blessed day for each of us.
My issue is with my job. I am supposed to occasionally change my hours and arrive for work at an earlier time. Yes, I do get to go home earlier, but it still means I have to get up at an unnaturally early hour. Today was that day. I managed to not snooze today in some weird attempt at respect for my sleeping spouse, but the struggle is real people!! Combat that with the fact that I am having a pain flare in my feet this week, and we have a recipe for an unpleasant work day. I wish I had words of wisdom, a great motto that I could flash on that would perk me up or bring a spring to my step, but ya know what? My memory is just not what it used to be either! That's another sneaky side effect of CRPS, you can't remember anything! My desk looks like the marketing campaign for Post-it notes. I should buy stock. If I had a motto, it would have to be permanently tattooed on the back of my hand if I were to have any hope of being able to quote it.
Ok, so I'm rambling a little. Must be the hour. Sorry dear reader. I will conclude by saying that at least we are still here, still warbling along this crazy ride, and for that I am thankful. I know that while it may have been difficult, I was able to get out of that bed this morning, and while each step may be painful, I'm still on my feet. Here's to a blessed day for each of us.
Thursday, October 5, 2017
Explaining My Road to CRPS
How to explain me to you...... well, if you are reading this, you probably found this blog because you or someone you know has CRPS, so I don't need to explain that one to you. I will tell you how I became familiar with that term. In April 2012, I stepped off my porch on the way to a fishing trip, and my right foot began to hurt. Not normal hurt, serious hurt. Of course I went fishing. I love fishing, and I wanted to go fishing, but I spent the entire time wishing I could dunk my foot in the cold lake and wondering why stepping one step off the porch had hurt so badly. I had not twisted or jumped. There was no real reason for so much pain.
Fast forward a bit.... the foot was fractured in three small places just behind my big toe. The orthopedist placed me in a boot, and I spent one week in a chair with no weight at all on my foot, then 5 more weeks in "the boot". Once I came out of "the boot", my pain continued. I went back in "the boot" for 5 more weeks. When I came out, there was no sign of fracture, and no reason I should still be in pain. For the next few months, the orthopedist tried a series of show inserts, some of which costs over $400 and I actually threw back at them when they made my feet worse. I was eventually sent to a neurologist when 3 doctors on the orthopedic clinic were unable to come to a consensus on what my issue could be.
My neurologist proceeded to do an MRI on my foot and determined that there was nothing wrong with me! Great news, except I was still hurting. I won't bore you with all the details, but the pain eventually traveled into my left foot. This was incredibly scary. I guess I should back up for a moment and describe the pain as it progressed. At first, the pain was a dull achy feeling, but it doesn't seem that it was long before the pain transitioned into a burning flame feeling. The pain was localized on the bottom of my feet, and always got progressively worse the longer I stood or put weight on my feet. In conjunction with the burning was an inner cold feeling that is hard to describe sometimes. How does something burn and freeze simultaneously?!? There was also eventually a sort of tingly feeling that travels up my legs, but stops about mid calf. (I'm told this is actually because of nerves in your back, TRIVIA!)
Anyway, back to the neurologist...after the MRI, they checked my nerve conductivity. I don't remember the official name of this test, but electric torture test would be appropriate. On the plus side, once the test is over, the pain is over. While the test is in progress, that pain is a monster. My neurologist pronounced my nerves to be functioning perfectly well, in fact, he said my nerves fired at some of the fastest speeds he had ever recorded. This did not surprise me, as it seemed to me my nerves were functioning in overdrive if at all. After this they did a nerve biopsy to see if my nerves were dying, nope, nerves were fine.
I was then sent to a cardiologist who tested my blood flow and ensured I had adequate flow to both feet. All fine there. My PCP checked me for arthritis. Regular blood tests, and advanced test. I was sent to a podiatrist. He tried multiple sets of shoe inserts over the course of over a year. He also tried an electrical message therapy technique that targeted the nerves traveling down my legs. I also went to a different orthopedic office and saw several more doctors at their location. None of it helped in the slightest. I tried 3 different chiropractors over 3 years. None of it helped.
Bare in mind that during all of this, I have still worked full time. Gotta eat! I know that there are plenty of people with this condition that are unable to work, and I have been so blessed to be able to work as long as I can. The last year has been the hardest to keep going.
I got my CRPS diagnosis after going to see my 7th orthopedist. I went to my PCP after 4 years and begged for help getting some kind of resolution as to why I was still hurting. She sent me to Emory University in Atlanta, Ga. It was there that I finally received a diagnosis of CRPS/RSD, and was told I needed to see a specialist to confirm the diagnosis and get possible treatment. Of course I went home and began to do as much research online as possible. Now I was terrified. Luckily, I found the website www.rsdsa.org and was able to get a list of doctors in Georgia who specialize in CRPS treatments. I changed my appointment to meet with a specialist of my choosing after some review and have been glad that I did.
Since this diagnosis, my CRPS has entered both of my hands. There are good days and bad. I will update more on my experiences and some successes and failures I have experienced with treatments. I will also share my frustrations or anything fun and happy. Pretty much whatever comes to mind. For now, I'm going to sign off and take a break. Feel free to leave a comment or ask a question.
Fast forward a bit.... the foot was fractured in three small places just behind my big toe. The orthopedist placed me in a boot, and I spent one week in a chair with no weight at all on my foot, then 5 more weeks in "the boot". Once I came out of "the boot", my pain continued. I went back in "the boot" for 5 more weeks. When I came out, there was no sign of fracture, and no reason I should still be in pain. For the next few months, the orthopedist tried a series of show inserts, some of which costs over $400 and I actually threw back at them when they made my feet worse. I was eventually sent to a neurologist when 3 doctors on the orthopedic clinic were unable to come to a consensus on what my issue could be.
My neurologist proceeded to do an MRI on my foot and determined that there was nothing wrong with me! Great news, except I was still hurting. I won't bore you with all the details, but the pain eventually traveled into my left foot. This was incredibly scary. I guess I should back up for a moment and describe the pain as it progressed. At first, the pain was a dull achy feeling, but it doesn't seem that it was long before the pain transitioned into a burning flame feeling. The pain was localized on the bottom of my feet, and always got progressively worse the longer I stood or put weight on my feet. In conjunction with the burning was an inner cold feeling that is hard to describe sometimes. How does something burn and freeze simultaneously?!? There was also eventually a sort of tingly feeling that travels up my legs, but stops about mid calf. (I'm told this is actually because of nerves in your back, TRIVIA!)
Anyway, back to the neurologist...after the MRI, they checked my nerve conductivity. I don't remember the official name of this test, but electric torture test would be appropriate. On the plus side, once the test is over, the pain is over. While the test is in progress, that pain is a monster. My neurologist pronounced my nerves to be functioning perfectly well, in fact, he said my nerves fired at some of the fastest speeds he had ever recorded. This did not surprise me, as it seemed to me my nerves were functioning in overdrive if at all. After this they did a nerve biopsy to see if my nerves were dying, nope, nerves were fine.
I was then sent to a cardiologist who tested my blood flow and ensured I had adequate flow to both feet. All fine there. My PCP checked me for arthritis. Regular blood tests, and advanced test. I was sent to a podiatrist. He tried multiple sets of shoe inserts over the course of over a year. He also tried an electrical message therapy technique that targeted the nerves traveling down my legs. I also went to a different orthopedic office and saw several more doctors at their location. None of it helped in the slightest. I tried 3 different chiropractors over 3 years. None of it helped.
Bare in mind that during all of this, I have still worked full time. Gotta eat! I know that there are plenty of people with this condition that are unable to work, and I have been so blessed to be able to work as long as I can. The last year has been the hardest to keep going.
I got my CRPS diagnosis after going to see my 7th orthopedist. I went to my PCP after 4 years and begged for help getting some kind of resolution as to why I was still hurting. She sent me to Emory University in Atlanta, Ga. It was there that I finally received a diagnosis of CRPS/RSD, and was told I needed to see a specialist to confirm the diagnosis and get possible treatment. Of course I went home and began to do as much research online as possible. Now I was terrified. Luckily, I found the website www.rsdsa.org and was able to get a list of doctors in Georgia who specialize in CRPS treatments. I changed my appointment to meet with a specialist of my choosing after some review and have been glad that I did.
Since this diagnosis, my CRPS has entered both of my hands. There are good days and bad. I will update more on my experiences and some successes and failures I have experienced with treatments. I will also share my frustrations or anything fun and happy. Pretty much whatever comes to mind. For now, I'm going to sign off and take a break. Feel free to leave a comment or ask a question.
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