I am not a morning person
4:30 AM finds me writhing in pain as the spasms hit again. (check yesterdays blog for what happened over the weekend) I am not a morning person so this really really stinks. When I finally get them to stop I notice that once again my leg is ice cold. I actually remembered to grab the thermometer and check the difference this time. 21 degree which stinks considering my body was under 2 blankets and a sheet, that is pretty dang cold.
I ended up having to call the doctor office 2 times yesterday but I finally got to talk to someone and I go in today. Hopefully we can figure out why my leg isn't working right. I mean I know I have this horrible disease but I didn't know it could make your brain and your leg not work together correctly. I do not like this feeling. I worry that it is my new normal with CRPS and I worry that it is something new, some new illness or disability. I don't know which one would be worse. I really really hope that this is just a flare up and that some temporary new meds will take care of it and I can get back to my usual crappy state that I am used to.
Since I am awake so gosh awful early I figured I would take the chance to start the catch up process from where I left off with my blog post after I was diagnosed. If you are my friend/family and see me on facebook then you don't need to read on unless you want to and get a little more detail :) . The last one before I restarted was after my first sympathetic nerve block that gave me a little relief. After that shot we did a second one and it sent me into a big downward spiral. I didn't get any warmth or any pain relief at all and I actually spent lots of time crying from pain and not sleeping so I wasn't willing to take the chance and try again after that. We decided to move forward with a spinal cord stimulator and set a trial date and sent in for insurance approval. My insurance didn't approve it and we found out the NIGHT before the procedure. I was crushed, absolutely crushed. This was in November of 2017. Doc continued to try and get the approval and we did. The second week of January I got the trial and after i spent a day recovering from wires being shoved in my back I was able to mess with the settings and be able to walk a lot better. I was able to shop and cook for a birthday party and be present at said party. It was amazing! 4 days I got to experience relief and walking then we had to take the trial out and my very first step without it was horrible.
March 2, 2018 I had the permanent put in and man that was a rough surgery. They did a laminectomy (remove part of the bone) starting at T8 to place the paddles in my spine then had to tunnel under the skin to bring the wires to where they connect with the battery in my lower back where they created a pocket to house the battery. A spinal cord stimulater is like a cross between a pace maker and a tens unit. It interrupts the pain signals between my brain and my foot. The first 3 ish days post op I didn't get much surgical pain relief from meds, it was horrible. It felt like someone took an axe to my back and went to town on it. By 3 weeks post op I was functioning better but still not allowed to bend, lift, twist, etc to allow the wires to scar into place to keep my coverage in the right place. Those restrictions were for roughly 7 or so weeks. When my restrictions were lifted I was able to walk more and be a little more normal it was nice.
Unfortunately my disease progressed faster than expected and I went from having CRPS in my foot and ankle to it working its way up my whole leg, hip and back on the right side. When I started getting symptoms in my hand and arm on that side I honestly started panicking. I had been seeing my pain doctors nurse practitioner and I love him but I wanted to talk to the doctor to see if there was anything else we could do to prevent spreading instead of just treating the pain. I had a horrible time with the nurse there. I don't want to go into detail on all that but I was so so so upset. Then comes my doctor appointment with the actual doctor and within 3 min my hopes shattered. He suggested I get a spinal cord stimulator..... I had one that he orchestrated for me. I felt that if he couldn't take a min to review my file before he spoke to me that he wasn't the doctor for me. I don't just have a failed surgery or chronic pain. I have a progressive disease. A disease dubbed the suicide disease because of the high rate of suicide from pain. It can go anywhere in my body that nerves are... anywhere. I took the month between that appointment and my next with the NP to gather my thoughts and what I needed in terms of treatment and I wrote a letter to my NP. He read it and took me seriously and my care has improved since then. He did many things to help including he worked to get me a second opinion at the Mayo clinic. Unfortunately they reviewed my file and determined that they couldn't do anything more than what he has done for me. That letter devastated me but we didn't give up. We got a referral for a second opinion from a great doctor with Vanderbilt. I had that appointment on my 40th birthday and it went well. They spent a lot of time with me and he was great. He said he would have done everything that they have already done for me which was good. He added a medicine that is for alzheimer's but shows promise in CPRS patients with little to no side effects. Well I had side effects lol I had very bad dizziness and was so fatigued but eventually my body adjusted and after a few weeks the symptoms in my hand and arm went away!! It hasn't helped my leg, hip foot and back but maybe over time it will.
I have only been able to work very sporadically and that stinks. I miss work. I miss friends. I miss being independent. This disease has taken a lot from me. A lot. I can't grocery shop alone. I can't go to the mall. I miss church regularly. I can't volunteer at my kids schools or help with marching band. I can't walk my kids to their classes when they get their schedule at registration. I can't just run to the store really quick to grab something I need. I can't stand at the stove and cook much. Showering hurts, shoes hurt, pants hurt, bedding hurts. This disease sucks. But my faith has grown. I have met new people through support groups online. I have had a chance to work on my art and I discovered digital art. I have started crafting to earn some money and it keeps my brain occupied. I now have weekends off to see my husband and kids. I try and think of that as a blessing and not concentrate on the fact I can't work and we need my income.
I believe that takes me up to the last blog post where I talked about the symptoms that started a little over a week ago with me falling and my leg shaking really weirdly. Hopefully I will remember to blog more even if people don't see it. It is a good way to track all that happens to me be it bad or good.
Catch you next time
I ended up having to call the doctor office 2 times yesterday but I finally got to talk to someone and I go in today. Hopefully we can figure out why my leg isn't working right. I mean I know I have this horrible disease but I didn't know it could make your brain and your leg not work together correctly. I do not like this feeling. I worry that it is my new normal with CRPS and I worry that it is something new, some new illness or disability. I don't know which one would be worse. I really really hope that this is just a flare up and that some temporary new meds will take care of it and I can get back to my usual crappy state that I am used to.
Since I am awake so gosh awful early I figured I would take the chance to start the catch up process from where I left off with my blog post after I was diagnosed. If you are my friend/family and see me on facebook then you don't need to read on unless you want to and get a little more detail :) . The last one before I restarted was after my first sympathetic nerve block that gave me a little relief. After that shot we did a second one and it sent me into a big downward spiral. I didn't get any warmth or any pain relief at all and I actually spent lots of time crying from pain and not sleeping so I wasn't willing to take the chance and try again after that. We decided to move forward with a spinal cord stimulator and set a trial date and sent in for insurance approval. My insurance didn't approve it and we found out the NIGHT before the procedure. I was crushed, absolutely crushed. This was in November of 2017. Doc continued to try and get the approval and we did. The second week of January I got the trial and after i spent a day recovering from wires being shoved in my back I was able to mess with the settings and be able to walk a lot better. I was able to shop and cook for a birthday party and be present at said party. It was amazing! 4 days I got to experience relief and walking then we had to take the trial out and my very first step without it was horrible.
March 2, 2018 I had the permanent put in and man that was a rough surgery. They did a laminectomy (remove part of the bone) starting at T8 to place the paddles in my spine then had to tunnel under the skin to bring the wires to where they connect with the battery in my lower back where they created a pocket to house the battery. A spinal cord stimulater is like a cross between a pace maker and a tens unit. It interrupts the pain signals between my brain and my foot. The first 3 ish days post op I didn't get much surgical pain relief from meds, it was horrible. It felt like someone took an axe to my back and went to town on it. By 3 weeks post op I was functioning better but still not allowed to bend, lift, twist, etc to allow the wires to scar into place to keep my coverage in the right place. Those restrictions were for roughly 7 or so weeks. When my restrictions were lifted I was able to walk more and be a little more normal it was nice.
Unfortunately my disease progressed faster than expected and I went from having CRPS in my foot and ankle to it working its way up my whole leg, hip and back on the right side. When I started getting symptoms in my hand and arm on that side I honestly started panicking. I had been seeing my pain doctors nurse practitioner and I love him but I wanted to talk to the doctor to see if there was anything else we could do to prevent spreading instead of just treating the pain. I had a horrible time with the nurse there. I don't want to go into detail on all that but I was so so so upset. Then comes my doctor appointment with the actual doctor and within 3 min my hopes shattered. He suggested I get a spinal cord stimulator..... I had one that he orchestrated for me. I felt that if he couldn't take a min to review my file before he spoke to me that he wasn't the doctor for me. I don't just have a failed surgery or chronic pain. I have a progressive disease. A disease dubbed the suicide disease because of the high rate of suicide from pain. It can go anywhere in my body that nerves are... anywhere. I took the month between that appointment and my next with the NP to gather my thoughts and what I needed in terms of treatment and I wrote a letter to my NP. He read it and took me seriously and my care has improved since then. He did many things to help including he worked to get me a second opinion at the Mayo clinic. Unfortunately they reviewed my file and determined that they couldn't do anything more than what he has done for me. That letter devastated me but we didn't give up. We got a referral for a second opinion from a great doctor with Vanderbilt. I had that appointment on my 40th birthday and it went well. They spent a lot of time with me and he was great. He said he would have done everything that they have already done for me which was good. He added a medicine that is for alzheimer's but shows promise in CPRS patients with little to no side effects. Well I had side effects lol I had very bad dizziness and was so fatigued but eventually my body adjusted and after a few weeks the symptoms in my hand and arm went away!! It hasn't helped my leg, hip foot and back but maybe over time it will.
I have only been able to work very sporadically and that stinks. I miss work. I miss friends. I miss being independent. This disease has taken a lot from me. A lot. I can't grocery shop alone. I can't go to the mall. I miss church regularly. I can't volunteer at my kids schools or help with marching band. I can't walk my kids to their classes when they get their schedule at registration. I can't just run to the store really quick to grab something I need. I can't stand at the stove and cook much. Showering hurts, shoes hurt, pants hurt, bedding hurts. This disease sucks. But my faith has grown. I have met new people through support groups online. I have had a chance to work on my art and I discovered digital art. I have started crafting to earn some money and it keeps my brain occupied. I now have weekends off to see my husband and kids. I try and think of that as a blessing and not concentrate on the fact I can't work and we need my income.
I believe that takes me up to the last blog post where I talked about the symptoms that started a little over a week ago with me falling and my leg shaking really weirdly. Hopefully I will remember to blog more even if people don't see it. It is a good way to track all that happens to me be it bad or good.
Catch you next time
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