When talking about hope in relation to RSD can be a dangerous thing. I don't exactly know how to explain what I am saying but I am going to try. This is on my mind right now because I have just discovered a treatment that could possibly change my life. The only problem is that you can't get this treatment in the United States and no insurance company will pay for it.
Every treatment I had, every surgery I went through I believed "This is the one that will make me better" or "This is the treatment that will change things". Unfortunately, none of them ever did "make me better" or "change things". Every treatment and/or surgery that didn't turn out the way I hoped caused me to sink deeper and deeper into myself. I got to the point where I didn't want to talk to anyone or see anyone. I hated myself. I hated that I wasn't getting better. It took me 4 yrs to get to where I realized I was not going to get better. The next surgery was not going to allow me to walk again. The next nerve block was not going to end the pain.
It took me 4 yrs before I would accept that my condition was permanent and I was not going to get better. My mother had tried to talk me into getting a handicap parking plate for months. I fought her over and over again about it. I didn't want to admit that I was not ever going to be able to drive myself to the store and walk in by myself like any other normal person. Eventually reality set in. I got my handicap tags (that made my mother very happy I can tell you. It made her life just a little easier while taking care of me). At the same time I broke down and went down to the social security office and applied for disability (that is a whole other story, a whole other post). After I accepted my condition and came to terms with it I started to come out of my depression.
I have had people come to me with this person or that treatment that they think could help me. I have a hard time trying to explain to them that even though I do want to get better more than anything else in the world, for a few different reasons I can't run after every idea that MIGHT help me. I won't put any more financial strain on my family chasing something that might help me. There is always somebody that knows a way to fix this or that. The only problem is that they all want money and usually a lot of it. The other reason is that mentally I can't take the ups and downs of hoping that the next treatment around the corner is going to be the one that works. I found that this can get addictive. When I was first diagnosed I spent hours and hours on the internet searching for something out there that most people don't know about but I was going to find and get "fixed". I spent hours and hours on the internet searching for something that didn't exist but worse than that I lost all those hours I could have spent with my family. I can't go back to that. I can't fall into that trap. Now, give me a treatment that does work and has the proof it does and I am there. I can risk my hope for that. I can risk my sanity for something that has worked and has a good chance of working on me. Something real and on the up and up. Something reliable, something that makes sense. I think I have finally found it.
I have found a treatment that works. If not an outright cure (although it seems some have been cured) at least a drastic change in the pain and symptoms I experience daily & hourly. It looks like it really might help me. Of course nothing is that easy. You can't get this treatment in the United States. You have to go to Germany to get it. Since you can't get this in the US that means that no insurance company will pay for it. Here lies the problem. I have found something that works. There are quite a few Americans that have gone over to Germany to get this treatment and have come back much better off than when they left. The only thing is that it doesn't look like it is going to happen for me. This treatment costs $25,000. That does not include airfare, place to stay for my husband and whoever comes along to help out, food, transportation once we get to Germany and everything else that we will need. I feel like the rug has been ripped out from under me. I don't know if I ever would have been excepted into the program or if it would have worked for me but I am not even going to be given the chance. There is no way I am ever going to be able to get there.
The reason that you can't get this treatment in the US is because our government, in this case the FDA in their infinite wisdom has decided that they will not allow anyone to be in a induced coma for longer than 2 day and this treatment require 5 days (you have to be in a coma because the drug that works on the nerves and effects the rsd can't be given in doses high enough to work with out inducing a psychotic episode. To prevent that they put you into a coma). This may seem drastic to someone who does not experience everyday what someone with full blown rsd experiences. If you did (and I would not wish this disease on my worst enemy) you would understand.
Our government will not allow a coma to be induced for a treatment that will essentially change my life, give my life back to me. They won't allow me to get this treatment here in the US where the insurance companies would have to at least consider paying for it. BUT, our government will fight for years to keep someone in a coma alive. Someone who will never come out of the coma and function beyond a vegative state. They will pay millions to fight to keep this person alive so that we as tax payers can pay millions to support this person. They are going to keep me safe though and not allow me to be put into a coma for a treatment that has proven to help so many people. Does that make sense to you? I know it sure doesn't make any sense to me.
I know there are risks to this procedure. I have read all about what can happen. I understand better than most, don't forget I am/was a nurse. I do know that to date no one has died from this procedure and no one has suffered any major medical complications. I know that there is always a chance that the next person even I could be that one person that does experience either of those but you know what? I want the chance to find out. I want the chance to be able to walk hand in hand with my husband. I want the chance to be able to dance while watching my husband's band play. I want the chance to be able to play with my daughter at the park. I want the chance to be able to dance at my son or daughters' wedding. I just want a chance. I want to hope.
Saturday, March 19, 2005
Thursday, March 10, 2005
Good Changes
The phrase "When one door closes another one opens" sums up my life with RSD. It has made me make some positive changes in my life. It has taught me some great lessons and given me some wonderful surprises. It hasn't all been bad.
The first lesson I had to learn was a hard one for me. I had to learn to slow down. I couldn't keep up the pace I did before I was hurt. If I did my body paid the price. I was now around for my kids instead of being at work or housework or any of the many things we think we need to do everyday. I may not have been able to physically do things with them but I could be there if they needed to talk or to just quietly hang out. Some of my favorite memories with my kids has occurred after I got RSD. The things I used to worry about and thought were important are now in perspective. I have come to understand that it doesn't matter if I don't have the house perfect of if I look just right. What is important is the time with my family. Especially the time with my family when my pain levels are low enough to be able to enjoy it. Health is important not keeping up with the person next door.
RSD gave me the perspective to see that the marriage I was in was not working for either of us and that nothing we could do would change that. That decision eventually led me to the happiest time in my life (although I didn't know it at the time). If I hadn't gotten divorced I wouldn't have met my husband Joe. Joe has made my life seem almost normal. He accepted me the way that I am now not what I had been. He is my rock on the bad days and my partner in crime on the good ones. A few months before our wedding date we got the shock of our lives and the light of our lives too. We found out we were having a baby. I was shocked and scared. I had been on so much medication when I found out I was pregnant I was afraid I had already damaged this innocent baby. We were sent to see a fetal specialist and I was watched closely. He reassured us that none of the medication I was on would hurt the baby. I don't know if I believed him or not then. When I was pregnant with my other 2 kids the dr's had me afraid to take even Tylenol and here I was on 390 mg of long acting morphine a day plus another 90 mg of instant morphine a day along with another 5 or 6 meds. On the orders of my pain Dr and the OB Dr (not to mention my own fears) I stopped taking all my meds as soon as I found out I was pregnant but that put me into withdrawals. I ended up in the ER 2 times because things got so bad. After I was off all my meds the fetal Dr told us that I could have killed the baby by stopping them and going through withdrawals. The baby was safer with me on my meds. I wish the dr's would get together before giving advice or orders and come to 1 decision. The pregnancy was rough because I was unable to do almost anything because of the pain. With no meds to help take some of the pain away it seemed to wash over me and engulf me much of the time. In January 2001 our very healthy daughter was born. She was perfect and I could breathe again and not worry. If not for the RSD none of that would have happened.
I can't say RSD has made my life better. It has caused some great things to happen to me. It has made my life harder in so many ways but it hasn't all been bad. If I was given the opportunity to look at my life now and see what I have and then decide to either go back and not ever have this disease but never have the good things that has come to me because of it. I would not hesitate for a second. I want the here and now. I want the husband, my 3 great kids that I spend a lot of time with. I want all the lessons I have learned. I want my life.
The first lesson I had to learn was a hard one for me. I had to learn to slow down. I couldn't keep up the pace I did before I was hurt. If I did my body paid the price. I was now around for my kids instead of being at work or housework or any of the many things we think we need to do everyday. I may not have been able to physically do things with them but I could be there if they needed to talk or to just quietly hang out. Some of my favorite memories with my kids has occurred after I got RSD. The things I used to worry about and thought were important are now in perspective. I have come to understand that it doesn't matter if I don't have the house perfect of if I look just right. What is important is the time with my family. Especially the time with my family when my pain levels are low enough to be able to enjoy it. Health is important not keeping up with the person next door.
RSD gave me the perspective to see that the marriage I was in was not working for either of us and that nothing we could do would change that. That decision eventually led me to the happiest time in my life (although I didn't know it at the time). If I hadn't gotten divorced I wouldn't have met my husband Joe. Joe has made my life seem almost normal. He accepted me the way that I am now not what I had been. He is my rock on the bad days and my partner in crime on the good ones. A few months before our wedding date we got the shock of our lives and the light of our lives too. We found out we were having a baby. I was shocked and scared. I had been on so much medication when I found out I was pregnant I was afraid I had already damaged this innocent baby. We were sent to see a fetal specialist and I was watched closely. He reassured us that none of the medication I was on would hurt the baby. I don't know if I believed him or not then. When I was pregnant with my other 2 kids the dr's had me afraid to take even Tylenol and here I was on 390 mg of long acting morphine a day plus another 90 mg of instant morphine a day along with another 5 or 6 meds. On the orders of my pain Dr and the OB Dr (not to mention my own fears) I stopped taking all my meds as soon as I found out I was pregnant but that put me into withdrawals. I ended up in the ER 2 times because things got so bad. After I was off all my meds the fetal Dr told us that I could have killed the baby by stopping them and going through withdrawals. The baby was safer with me on my meds. I wish the dr's would get together before giving advice or orders and come to 1 decision. The pregnancy was rough because I was unable to do almost anything because of the pain. With no meds to help take some of the pain away it seemed to wash over me and engulf me much of the time. In January 2001 our very healthy daughter was born. She was perfect and I could breathe again and not worry. If not for the RSD none of that would have happened.
I can't say RSD has made my life better. It has caused some great things to happen to me. It has made my life harder in so many ways but it hasn't all been bad. If I was given the opportunity to look at my life now and see what I have and then decide to either go back and not ever have this disease but never have the good things that has come to me because of it. I would not hesitate for a second. I want the here and now. I want the husband, my 3 great kids that I spend a lot of time with. I want all the lessons I have learned. I want my life.
Wednesday, March 09, 2005
My Story - part 1
On July 15, 1995 my life as I knew it ended. I know that sounds melodramatic but as you read my story you will start to understand. I was 26 years old, a wife of 8 years, mother to 2 young children and I had just started my career as a RN. I had been going to school at night for the last 4 years to get my degree in nursing. That was not an easy feat at any time and trying to do it with 2 young children made it even tougher. I missed a lot of their life during those 4 years. Even though I was going to school at night it still required a lot of my time during the day. I had to study, I had to go to campus for a special class....anything could come up that was related to school that took me out of the house during the day and then to classes at night. I hated missing so much with them but I kept telling myself that I am doing this for them and their future. If I knew then what I know now I would have dropped out in a second and spent that very special time with them and enjoyed them like I should have. I would have made it to more soccer games, run with them, gone trick or treating all the things that I was soon going to be unable to do with them ever again.
I finally graduated and passed my nursing boards. I graduated in December of 1994 and got my first and last job as a nurse in May of 1995. I loved being a nurse. I loved having a career. This was something that I had wanted for as far back as I can remember. That time was very peaceful now that I look back at it. Little did I know that it was the calm before the storm. I was working on July 15, 1995. We were working short again and things were hectic. I was coming out of a patients room thinking of all the things that I still had to do when I fell. My feet just flew out from under me and I crashed to the floor in a patients room. I didn't find out until later that what I slipped on was some spilled oatmeal on the floor. I knew I had hurt myself but didn't think it was too bad yet. I worked the rest of that day and the first few hours of my shift the next day before I couldn't take the pain anymore and had to seek medical help.
It is amazing the difference in the way Doctors treat you when they hear the words "worker's comp". I had surgeries and therapies but I was not getting any better. In fact, things were getting worse. My doctors didn't know what was wrong with me so they decided that there was nothing wrong with me. I just didn't want to work. So, 9 months after my fall workers comp pulled the rug out from underneath me and stopped paying my medical bills & the small pay that I was allowed. I was left with nothing because a doctor (and I use that word loosely) said that there was nothing wrong with me and I could go back to work with no restrictions. GO BACK TO WORK!!! I was still on crutches and had not been able to work or drive since the day after I fell. If I went back to work I would not only be putting my own safety and health in danger but I would have been jeopardizing the safety of my patients. I had to resign from my job. It was either that or I would be charged with job abandonment and could have lost my license.
Now that worker's comp was no longer covering me my health insurance would now pick up the bills (I was lucky, my husband at the time was able to carry me on his health insurance). I was able to see Dr's that I chose, ones that actually wanted to find out what was wrong with me and fix it. It took the first Dr I saw to see that I had a major injury to my right knee and that I needed reconstructive surgery to fuldn't let anyone even touch it. When my therapist said she thought I had RSD and she was going to contact my ortho Dr asap to let him know what she thought, I cried. There was a name for what I had. I wasn't going crazy. It was real. It took 2 years from the time of my injury till I had an answer for what was wrong with me. Unfortunately, I found out later that it was 1 1/2 yrs too late. The only thing that stops this monster is a nerve block but it has to be done within 6 months of the onset of symptoms for it to even have a chance of reversing the RSD. For me it was too late.ix it. After the surgery I was going to physical therapy when one of the therapists noticed that my leg was not getting better. My 3 month post op knee looked and worked like a 3 week post-op knee. It had been looking pretty funny for a long time by then. It would swell up like a balloon, it would turn blue and then such a deep shade of purple that it almost looked black. But, the worst was the pain. The constant, unrelenting pain. The burning, stabbing constant pain. I was in so much pain that even the breeze from a paddle fan would send me through the roof. I co
I finally graduated and passed my nursing boards. I graduated in December of 1994 and got my first and last job as a nurse in May of 1995. I loved being a nurse. I loved having a career. This was something that I had wanted for as far back as I can remember. That time was very peaceful now that I look back at it. Little did I know that it was the calm before the storm. I was working on July 15, 1995. We were working short again and things were hectic. I was coming out of a patients room thinking of all the things that I still had to do when I fell. My feet just flew out from under me and I crashed to the floor in a patients room. I didn't find out until later that what I slipped on was some spilled oatmeal on the floor. I knew I had hurt myself but didn't think it was too bad yet. I worked the rest of that day and the first few hours of my shift the next day before I couldn't take the pain anymore and had to seek medical help.
It is amazing the difference in the way Doctors treat you when they hear the words "worker's comp". I had surgeries and therapies but I was not getting any better. In fact, things were getting worse. My doctors didn't know what was wrong with me so they decided that there was nothing wrong with me. I just didn't want to work. So, 9 months after my fall workers comp pulled the rug out from underneath me and stopped paying my medical bills & the small pay that I was allowed. I was left with nothing because a doctor (and I use that word loosely) said that there was nothing wrong with me and I could go back to work with no restrictions. GO BACK TO WORK!!! I was still on crutches and had not been able to work or drive since the day after I fell. If I went back to work I would not only be putting my own safety and health in danger but I would have been jeopardizing the safety of my patients. I had to resign from my job. It was either that or I would be charged with job abandonment and could have lost my license.
Now that worker's comp was no longer covering me my health insurance would now pick up the bills (I was lucky, my husband at the time was able to carry me on his health insurance). I was able to see Dr's that I chose, ones that actually wanted to find out what was wrong with me and fix it. It took the first Dr I saw to see that I had a major injury to my right knee and that I needed reconstructive surgery to fuldn't let anyone even touch it. When my therapist said she thought I had RSD and she was going to contact my ortho Dr asap to let him know what she thought, I cried. There was a name for what I had. I wasn't going crazy. It was real. It took 2 years from the time of my injury till I had an answer for what was wrong with me. Unfortunately, I found out later that it was 1 1/2 yrs too late. The only thing that stops this monster is a nerve block but it has to be done within 6 months of the onset of symptoms for it to even have a chance of reversing the RSD. For me it was too late.ix it. After the surgery I was going to physical therapy when one of the therapists noticed that my leg was not getting better. My 3 month post op knee looked and worked like a 3 week post-op knee. It had been looking pretty funny for a long time by then. It would swell up like a balloon, it would turn blue and then such a deep shade of purple that it almost looked black. But, the worst was the pain. The constant, unrelenting pain. The burning, stabbing constant pain. I was in so much pain that even the breeze from a paddle fan would send me through the roof. I co
Tuesday, March 08, 2005
My Story - Part 2
It is amazing the things we take for granted. There are so many things that I can't do anymore and things that just take too much out of me to do. Most people don't understand that. When friends would come around and want to go do this or that I just could not go. If I did the next 3 days would be pure hell for me. I would be in so much pain that less than an hour out and all I wanted to do was come home. Friends began to fall by the wayside. Let's be real, who wants to hang around with someone who is always in pain and just can't do much of anything anymore? After awhile they stopped asking me to go out with them. They got tired of having to be the one to visit my house all the time. I tried to keep up for awhile. I tried to act like I was fine and do the things that any normal person would do. I just couldn't pretend anymore. For my own health and pain levels I had to come to terms with the fact that I was just not normal anymore. One day I looked around and there was no one left around. My friends had all moved on with their lives and I was just not part of that anymore.
My marriage which was struggling before my fall could not survive this disease. After 9 years of marriage we calmly split. No big fight or court battles. I was alone for the first time in 10 years with 2 small kids and a disease that barred me from working and supporting us. Now that I wasn't married anymore I found myself homeless. The only income I had was the child support that I was getting from my ex. The kids and I moved in with my parents. I had to put some money towards the bills like groceries and things. I couldn't burden my parents with everything. I was already giving them so many more headaches and trouble than I ever wanted to. I felt guilty about it all the time. My medications were pretty much draining any money I had. This led me to make the toughest decision of my life. I didn't renew my nursing license. I had to make a choice of paying for my license which I would never be able to use again or pay for food for my kids. The decision was easy of course my kids come first but I cried for 2 hours straight once I made that decision. This disease just robbed me of one more thing.
Thank God for my mother. She was there for me everyday. She was the one who drove me to all my many doctor's visits, my therapy appointments and sat with me through countless surgeries. She was there to take care of me after the surgeries and to take care of the kids when I couldn't do it. She became more of a mother to them that I was. I just couldn't do the "fun" things. I could barely do the "need to" things. My mom was the one to take them and pick them up from school, to take them shopping for the things that all kids need. All the little things that we just never think about we just do. My life pretty much revolved around the sofa. I lived there, I ate there and I slept there. My mom was doing the house work, the cooking, the cleaning and taking care of the kids. I felt useless. I felt like I had lost all purpose in life except to take medication and to feel pain 24/7.
At some point during all this I received a WebTV as a present. For any who don't know what that is, it is a way to access the internet without a computer. I relentlessly researched anything and everything I could find about RSD. I talked to other people just like me from all over the world. I didn't feel so alone anymore. There were others like me. I wasn't a freak. I also started chatting in a chat room and there I met someone who would end up sharing my life with me and make me feel like a person again. I met my husband Joe. All I kept thinking was this guy is nuts. He wanted me to be part of his life!! Me and all my baggage. After a few months of dating me asked me to move in with him. I thought he had lost his mind. Did he know what he was really getting into? He said he did. He wanted me with my disability (knowing that I would never be able to work again), 2 kids, 1 dog, 1 cat & a bird. Meeting him and agreeing to marry him was the best thing I ever could have done.
My treatments continued throughout all of this. I had 5 spinal nerve blocks but I only got relief for 10 hours or less. The doctors felt the risks were outweighing the benefits. So we stopped that. I was on so much medicine that it was shocking I was even functioning. The next treatment we tried was a spinal cord stimulator. For awhile there I thought we had found the answer. A spinal cord stimulator is basically a battery pack and computer chip that is implanted in my butt connected to electrodes that are placed in the epidural space of my spine by the nerves that went to my right leg. The way it works is that it sends signals to the nerves that almost felt like the pins and needles you get when your arm goes to sleep. These signals block the pain signals from reaching the brain. I went from crutches to a cane. I was able to walk more than a few feet. I was getting around again. It wasn't a cure. I was still on a lot of medications and still had to be careful to not push myself to hard but I was walking and better yet, I was doing things with my kids. I was on top of the world.
Like in anything if your on top you can always fall. I fell, crashed and burned. I was trying to do something (can't remember what at this point) and I tripped over a wire and fell. All the progress I had made was gone. I was back on crutches and in a wheelchair if I went out anywhere. I was unable to do anything again. My pain levels sky rocketed. I have never been that well again. That fall put me into a downward spiral. I have had a total of 8 surgeries on that knee. I am on medication that has stolen my memory. I have lost days. I have forgotten surgeries (my husband is my memory when that happens), I have forgotten things that happened with the kids, we even had a dog for 2 days that I don't remember having. This disease has robbed me of so much more than the ability to walk. It has taken so many things that people take for granted. Things that give you quality of life.
My marriage which was struggling before my fall could not survive this disease. After 9 years of marriage we calmly split. No big fight or court battles. I was alone for the first time in 10 years with 2 small kids and a disease that barred me from working and supporting us. Now that I wasn't married anymore I found myself homeless. The only income I had was the child support that I was getting from my ex. The kids and I moved in with my parents. I had to put some money towards the bills like groceries and things. I couldn't burden my parents with everything. I was already giving them so many more headaches and trouble than I ever wanted to. I felt guilty about it all the time. My medications were pretty much draining any money I had. This led me to make the toughest decision of my life. I didn't renew my nursing license. I had to make a choice of paying for my license which I would never be able to use again or pay for food for my kids. The decision was easy of course my kids come first but I cried for 2 hours straight once I made that decision. This disease just robbed me of one more thing.
Thank God for my mother. She was there for me everyday. She was the one who drove me to all my many doctor's visits, my therapy appointments and sat with me through countless surgeries. She was there to take care of me after the surgeries and to take care of the kids when I couldn't do it. She became more of a mother to them that I was. I just couldn't do the "fun" things. I could barely do the "need to" things. My mom was the one to take them and pick them up from school, to take them shopping for the things that all kids need. All the little things that we just never think about we just do. My life pretty much revolved around the sofa. I lived there, I ate there and I slept there. My mom was doing the house work, the cooking, the cleaning and taking care of the kids. I felt useless. I felt like I had lost all purpose in life except to take medication and to feel pain 24/7.
At some point during all this I received a WebTV as a present. For any who don't know what that is, it is a way to access the internet without a computer. I relentlessly researched anything and everything I could find about RSD. I talked to other people just like me from all over the world. I didn't feel so alone anymore. There were others like me. I wasn't a freak. I also started chatting in a chat room and there I met someone who would end up sharing my life with me and make me feel like a person again. I met my husband Joe. All I kept thinking was this guy is nuts. He wanted me to be part of his life!! Me and all my baggage. After a few months of dating me asked me to move in with him. I thought he had lost his mind. Did he know what he was really getting into? He said he did. He wanted me with my disability (knowing that I would never be able to work again), 2 kids, 1 dog, 1 cat & a bird. Meeting him and agreeing to marry him was the best thing I ever could have done.
My treatments continued throughout all of this. I had 5 spinal nerve blocks but I only got relief for 10 hours or less. The doctors felt the risks were outweighing the benefits. So we stopped that. I was on so much medicine that it was shocking I was even functioning. The next treatment we tried was a spinal cord stimulator. For awhile there I thought we had found the answer. A spinal cord stimulator is basically a battery pack and computer chip that is implanted in my butt connected to electrodes that are placed in the epidural space of my spine by the nerves that went to my right leg. The way it works is that it sends signals to the nerves that almost felt like the pins and needles you get when your arm goes to sleep. These signals block the pain signals from reaching the brain. I went from crutches to a cane. I was able to walk more than a few feet. I was getting around again. It wasn't a cure. I was still on a lot of medications and still had to be careful to not push myself to hard but I was walking and better yet, I was doing things with my kids. I was on top of the world.
Like in anything if your on top you can always fall. I fell, crashed and burned. I was trying to do something (can't remember what at this point) and I tripped over a wire and fell. All the progress I had made was gone. I was back on crutches and in a wheelchair if I went out anywhere. I was unable to do anything again. My pain levels sky rocketed. I have never been that well again. That fall put me into a downward spiral. I have had a total of 8 surgeries on that knee. I am on medication that has stolen my memory. I have lost days. I have forgotten surgeries (my husband is my memory when that happens), I have forgotten things that happened with the kids, we even had a dog for 2 days that I don't remember having. This disease has robbed me of so much more than the ability to walk. It has taken so many things that people take for granted. Things that give you quality of life.
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