I haven't written in awhile. With the kids out of school things are kind of crazy here. I am pretty much maintaining. Not getting any better but thank God, not getting any worse. I still have the problem with my good knee and my back. I want to thank the woman who wrote me suggesting I call the insurance company to see if they would allow me to keep my own Dr's. I hadn't thought of doing that. It didn't work but it was definitely worth the try. I am going to have to give in and bite the bullet. I need to find a good ortho Dr soon. Not only for me but my husband Joe has been having problems with his elbow. I think it is referred pain brought on by his carpal tunnel. He should have had surgery on it a few years ago. But, he is a drummer as well as a welder and he needs his hands. He just can't seem to find a good time to give his hands a vacation. I think I am going to have to put my foot down here. LOL.
I really miss being able to do the things most people do in the summer time. I miss being able to go to the beach, play in the water and walk along the beach looking for sea shells. I miss being able to ride the rides at the amusement parks. It is hard to find things to do that the whole family wants to do and that I am able to do. I am not sure what we are going to do yet. I guess I better figure it out soon since summer is more than half over.
The kids want to go to Great Adventure or Hurricane Harbor. For anyone who has no idea of what I am talking about. Great Adventure is a Six Flags Park. Hurricane Harbor is a sister park of Great Adventure and a water park. I would love to take them but for me to go we have to pay the full amount for me (there is a discount for disabled but out of a $40 ticket they discount me $4....big deal!) and all I can do is watch the kids and the shows. That's it. I don't want to waste the money. It isn't much fun just sitting there. I love watching the kids have fun but there are times when I would love to get out there and have fun myself. I used to love going camping. Now the only way I can go is if we can get a camper that has it's own bathroom and shower (no way that is going to happen with our medical bills). There is no way I could get on and off the ground if we tent camped and there is no way I could physically get back and forth to the bathroom all day. If I had to do that then all my energy would go into just the trips to the bathroom. I wouldn't have the strength or the pain control to do anything else. The shower is a must because of the risk of me falling in a public shower. They are too slippery and there is no where for me to sit down if I have to while taking the shower (which is the only way I could take one. Usually all I can handle is baths because there is no water hitting my leg). So, camping is out too. I have to figure something out because these kids want to do something and if I don't do something with them soon they are going to drive me crazy and then we will have one more medical bill to add to the pile.
I will write back as soon as I can get a few minutes from the kids and update more. For now I am going to go take my meds and put my leg up.
Friday, July 29, 2005
Thursday, June 02, 2005
Not Again!!!
I can't believe my luck. I am not sure if it is fate I should be mad at or my body. I am so tired of my body failing me.
I only have one leg that works and that one isn't too good. Before my fall my left leg was my bad leg. I have had trouble with it since I was 15 yrs old . I don't even want to tell you how long ago that was. I tore cartilage while dancing. (When ever I tell anyone that they think ballet, jazz, tapp etc. No, I did mine while just plain regular dancing while a band was playing). Ever since then I have had trouble. I have had 9 surgeries on it over the years. One of those surgeries was a knee reconstruction surgery. I was doing pretty good with it until I fell 10 yrs ago. Before that I was able to baby it. Put as little stress on it as possible. Now it has to take all my weight and all the abuse. It is showing signs of giving up, saying enough, I've had it. My knee has gotten to the point that if I stand for any length of time it will dislocate. I can't tell you how painful that is especially since I can't take my weight off it when it happens. As painful as it is to stand on a leg that is dislocated it is 100X more painful to stand on the leg with rsd.
The other day all I was doing was sitting in my recliner (my place to live, watch TV, even sleep), I went to move my leg and pain shot all the way up to my thigh. I did it again! I dislocated it. Like I said I have been dealing with this for many, many years and I have had many, many surgeries for it. I know when it is just a dislocation and when there is more damage inside. Well, I have more damage inside. I know I tore whatever catilage is left, up.
I have been putting up with the pain for 2 weeks now hoping that with time it will calm down so that it is at least livable. NOT GOING TO HAPPEN!! I know I need to see a dr but here is the problem. I only trust 2 ortho dr's I have ever seen. The first is my dr since my problems began. He was the one to listen when the worker's comp dr's said there was nothing wrong. He knew that the knee needed reconstructive surgery. He was the one when after the operation I wasn't healing right diagnosed me with rsd and sent me to a specialist. He didn't say "it's all in your head","you just don't want to work" or my all time favorite "you just have a low tolerance to pain" (which by the way I freaked on the last dr to tell me that. I yelled "I have had 2 kids by natural child birth. No epidurals. I was working when my appendix was rupturing, after my surgery for my appendix I was back to work and night school in less than a week. Don't tell me that I have a low tolerance to pain!!!"). I changed dr's a few times over the years because my insurance doesn't cover this dr anymore. After some very bad tries I hit pay dirt with the second ortho dr I trust. He has taken care of me for the last 3yrs. Now he isn't on our insurance anymore either. I don't want to go looking for another ortho dr. I only have one leg left. If I lose the use of this leg due to a dr that is less than great than I am in a wheelchair all the time. My house can't accommodate that. I am in real trouble here. I could go out of network, my insurance company so generously allows that. Unfortunately, I can't afford that option.
I am scared. I know I need to do something and do it soon because I am losing any independence I have left. I can't bring myself to put my life in a strangers hands. I have had so many bad experiences with too many dr's to allow myself to do that. I can't afford to play Russian roulette with my leg and my life. I am sitting in limbo. I am sitting in pain. Not that the pain part is unusual but it is more pain. I can't take anymore pain. I cry myself to sleep many nights trying not to let my husband or the kids hear me. I am scared, hurting and fed up. How much are we supposed to have to deal with before we have a break down? I know my daughter senses something is wrong with me. She is acting up much more than normal. Of course this is at a time that I could not be more ill equipped to deal with it.
The insurance companies should not be allowed to just decide my fate like this. With my medical history the insurance co should pay for the dr that is most familiar with my case and my condition. I shouldn't be made to start over and hope for the best. It is not like I am somebody who just shows up with a broken leg. I have too much going on. Too much that can go wrong. The dr most familiar with my medical history should be the one to take care of me. They should pay for the dr that has the best chance of giving me some quality of life. They should have some human compassion. I know it is only a company but real people work in this company and they are dealing with real people with real problems. We don't always fit into some nice neat category or box.
Of course no one ever said life was fair or that we can live by the should haves. I and anyone who has ever been through a hardship knows that life is not fair. Life just is. You have to deal with what ever has fallen in your lap and then hope and pray that you are dealing with it in the best way possible. I just wish there was some magic eight ball that could let you know when you are doing it right. If only there was some sort of big sign that flashes in front of you saying "STOP, GO BACK, WRONG TURN, WRONG DECISION". If only.
I only have one leg that works and that one isn't too good. Before my fall my left leg was my bad leg. I have had trouble with it since I was 15 yrs old . I don't even want to tell you how long ago that was. I tore cartilage while dancing. (When ever I tell anyone that they think ballet, jazz, tapp etc. No, I did mine while just plain regular dancing while a band was playing). Ever since then I have had trouble. I have had 9 surgeries on it over the years. One of those surgeries was a knee reconstruction surgery. I was doing pretty good with it until I fell 10 yrs ago. Before that I was able to baby it. Put as little stress on it as possible. Now it has to take all my weight and all the abuse. It is showing signs of giving up, saying enough, I've had it. My knee has gotten to the point that if I stand for any length of time it will dislocate. I can't tell you how painful that is especially since I can't take my weight off it when it happens. As painful as it is to stand on a leg that is dislocated it is 100X more painful to stand on the leg with rsd.
The other day all I was doing was sitting in my recliner (my place to live, watch TV, even sleep), I went to move my leg and pain shot all the way up to my thigh. I did it again! I dislocated it. Like I said I have been dealing with this for many, many years and I have had many, many surgeries for it. I know when it is just a dislocation and when there is more damage inside. Well, I have more damage inside. I know I tore whatever catilage is left, up.
I have been putting up with the pain for 2 weeks now hoping that with time it will calm down so that it is at least livable. NOT GOING TO HAPPEN!! I know I need to see a dr but here is the problem. I only trust 2 ortho dr's I have ever seen. The first is my dr since my problems began. He was the one to listen when the worker's comp dr's said there was nothing wrong. He knew that the knee needed reconstructive surgery. He was the one when after the operation I wasn't healing right diagnosed me with rsd and sent me to a specialist. He didn't say "it's all in your head","you just don't want to work" or my all time favorite "you just have a low tolerance to pain" (which by the way I freaked on the last dr to tell me that. I yelled "I have had 2 kids by natural child birth. No epidurals. I was working when my appendix was rupturing, after my surgery for my appendix I was back to work and night school in less than a week. Don't tell me that I have a low tolerance to pain!!!"). I changed dr's a few times over the years because my insurance doesn't cover this dr anymore. After some very bad tries I hit pay dirt with the second ortho dr I trust. He has taken care of me for the last 3yrs. Now he isn't on our insurance anymore either. I don't want to go looking for another ortho dr. I only have one leg left. If I lose the use of this leg due to a dr that is less than great than I am in a wheelchair all the time. My house can't accommodate that. I am in real trouble here. I could go out of network, my insurance company so generously allows that. Unfortunately, I can't afford that option.
I am scared. I know I need to do something and do it soon because I am losing any independence I have left. I can't bring myself to put my life in a strangers hands. I have had so many bad experiences with too many dr's to allow myself to do that. I can't afford to play Russian roulette with my leg and my life. I am sitting in limbo. I am sitting in pain. Not that the pain part is unusual but it is more pain. I can't take anymore pain. I cry myself to sleep many nights trying not to let my husband or the kids hear me. I am scared, hurting and fed up. How much are we supposed to have to deal with before we have a break down? I know my daughter senses something is wrong with me. She is acting up much more than normal. Of course this is at a time that I could not be more ill equipped to deal with it.
The insurance companies should not be allowed to just decide my fate like this. With my medical history the insurance co should pay for the dr that is most familiar with my case and my condition. I shouldn't be made to start over and hope for the best. It is not like I am somebody who just shows up with a broken leg. I have too much going on. Too much that can go wrong. The dr most familiar with my medical history should be the one to take care of me. They should pay for the dr that has the best chance of giving me some quality of life. They should have some human compassion. I know it is only a company but real people work in this company and they are dealing with real people with real problems. We don't always fit into some nice neat category or box.
Of course no one ever said life was fair or that we can live by the should haves. I and anyone who has ever been through a hardship knows that life is not fair. Life just is. You have to deal with what ever has fallen in your lap and then hope and pray that you are dealing with it in the best way possible. I just wish there was some magic eight ball that could let you know when you are doing it right. If only there was some sort of big sign that flashes in front of you saying "STOP, GO BACK, WRONG TURN, WRONG DECISION". If only.
Friday, April 22, 2005
The Family Suffers Too
When a person in a family is diagnosed with a debilitating disease or condition that person isn't the only one who suffers. It may feel like it at the time and you may feel like you are the only one who is going through it but it just isn't true. The families of people like me suffer. The toll it takes on the kids alone is amazing. They have to grow up way before they should. That innocence is lost somewhere along the way. I know my kids went from having a mother who was there for them and did things for and with them to having to be the ones to do for me. I just couldn't do the things that I did before and I couldn't get up and just be there for them. At my worst I was bed bound and just couldn't be there. When I was first injured my kids were 5 & 8. It should have been such an innocent time for them. Instead they saw mommy hurting all the time, a mommy who was crying all the time (I of course have one of those conditions that dr's just don't diagnose early. They make you think it is all in your head and that you are crazy. You start to believe you are crazy),a mommy who was not "their mommy". I heard that one a lot. I think the worst was the day my daughter who was 14-15 at the time told me to let her do something instead of her brother who I had asked because as she puts it "I already destroyed her childhood and not to do that to her brother". I have never felt more crushed, guilty or horrible in my life. It was like she had slapped me in the face. No matter how she tried to explain it away after she said it (she realized after it was out what she had said) there was just no way to deny that in a lot of ways she was right. I had taken a lot from her. I had taken the innocent child's play away and replaced it with taking care of mommy. Not fair for anyone let alone a child. My youngest will never know what a real mommy is like. She was born after this condition rendered me completely disabled. Her mommy will never run with her, take her to the beach, dance with her. Her mommy will never walk, will never be able to just pick her up and swing her in a circle while we laugh till we are dizzy. I am stuck living out of a recliner. I spend my days there and because of the pain I even sleep there.
Our spouses are forgotten about many times while we are suffering but the stress, pressure and pain that they feel is real and enormous. My first marriage didn't survive my injury and then my rsd (not that is was doing great before my injury). I did meet a great guy on line and we have been married almost 5yrs now. He married me knowing all the things I would never be able to do and that is a lot. What he goes through because of me amazes me and humbles me. I wonder what he sees in me that makes him want to deal with all he has to. Let's face it, it isn't like I can go out and do things with him (I do when I can but not like a "normal" person), I don't do much around the house & I can't work. All the money that comes into the house comes from him, all the driving is done by him, most of the housework is done by him, most of the cooking is done by him....I think you get the picture. I am unable to drive because of the medication I am on so he does all the driving. Of course none of my dr's that I need to see on a monthly basis have evening hours. This means that once a month at least he has to come home early from work to take me. This means leaving the job early which most bosses do not like. I have seen my husband passed over at work because of the days and hours he has had to take off because of me. He would deny it but I am not blind. I saw what was going on and he never once blamed me (I guess I did that enough on my own). Thank God he is at a job now where they are very understanding. They aren't penalizing him because he has a cripple for a wife. The stress he is under dealing with everything and then watching me in pain and knowing that there is nothing he can do for me must be huge. I wonder what makes him want this. No matter what the reason our spouses suffer right along with us(at least the good ones do).
We can't forget our parents, siblings etc. My mom put her life on hold for 3 years when I was first injured. She got me through the initial injury, the fight to get diagnosed, dealing with the diagnosis and search for the right treatment for me. She was there for my kids. She took them and picked them up from school, she drove me to all my dr's appointments, surgeries, therapy. She took me grocery shopping, took the kids to there dr's appointments, soccer practice and the list goes on. My mom cooked a lot of meals for us and did a fair amount of house work before going home and doing it all over again at her house. She was my rock while I was still in my first marriage (my ex was not going to put his life on hold or change it in any way to accommodate my new condition. It really didn't make an impact in his life at all). After my divorce and a brief stay at my mom's I moved in with my new husband. I now live too far away for my mom to be able to come everyday. It was time to let her get on with her own life. My husband takes care of me very well and now she can move forward. My mom was affected, my dad and sister was affected because my mom was with me so much. I am sure that they felt left out and abandoned. I feel guilty over that. Not only that they felt that way and I was "taking over" my mother but also because I really did take over my mom. I had to. I didn't have anyone else. I know my mom felt helpless because she knew what kind of pain I was in, she saw the sleepless nights and the pain of not being able to do for my kids and there was nothing she could do to help me with that. All she did for me and she wasn't able to do the one thing I know she wanted to do the most and that was to take my pain away. She wanted what every mother wants, to protect and shelter you kids, to take away their pain. I know with my own kids it doesn't matter how old they get, the instinct to protect never goes away. If I could take away any pain my kids are feeling I would. But, we can't. I feel bad when I can't take away the pain of a skinned knee or a broken heart. I can't imagine what it would be like to watch one of my kids go through what I go through everyday and know that there is nothing I can do for them. To know that the only thing I can do it to be there for them to lean on and just watch. How my mom does it, I just don't know.
For everyone who has had to suffer, stress out, feel left out. For everyone in my life who has been there for me, helped me, was a shoulder for me to lean on. I thank you from the bottom of my heart. There are not enough words to describe how much it has all meant to me. There is not enough time to write about everyone and everything that they have done for me. From surprising me with a scarecrow and pumpkins in my front yard just to cheer me up to loving me with all my problems and handicaps. THANK YOU!!!! I LOVE YOU ALL.
So, you see we are not the only ones who suffer and deal with things. Our families and the friends that do stick with us go through a lot also and deserve to be recognized.
Our spouses are forgotten about many times while we are suffering but the stress, pressure and pain that they feel is real and enormous. My first marriage didn't survive my injury and then my rsd (not that is was doing great before my injury). I did meet a great guy on line and we have been married almost 5yrs now. He married me knowing all the things I would never be able to do and that is a lot. What he goes through because of me amazes me and humbles me. I wonder what he sees in me that makes him want to deal with all he has to. Let's face it, it isn't like I can go out and do things with him (I do when I can but not like a "normal" person), I don't do much around the house & I can't work. All the money that comes into the house comes from him, all the driving is done by him, most of the housework is done by him, most of the cooking is done by him....I think you get the picture. I am unable to drive because of the medication I am on so he does all the driving. Of course none of my dr's that I need to see on a monthly basis have evening hours. This means that once a month at least he has to come home early from work to take me. This means leaving the job early which most bosses do not like. I have seen my husband passed over at work because of the days and hours he has had to take off because of me. He would deny it but I am not blind. I saw what was going on and he never once blamed me (I guess I did that enough on my own). Thank God he is at a job now where they are very understanding. They aren't penalizing him because he has a cripple for a wife. The stress he is under dealing with everything and then watching me in pain and knowing that there is nothing he can do for me must be huge. I wonder what makes him want this. No matter what the reason our spouses suffer right along with us(at least the good ones do).
We can't forget our parents, siblings etc. My mom put her life on hold for 3 years when I was first injured. She got me through the initial injury, the fight to get diagnosed, dealing with the diagnosis and search for the right treatment for me. She was there for my kids. She took them and picked them up from school, she drove me to all my dr's appointments, surgeries, therapy. She took me grocery shopping, took the kids to there dr's appointments, soccer practice and the list goes on. My mom cooked a lot of meals for us and did a fair amount of house work before going home and doing it all over again at her house. She was my rock while I was still in my first marriage (my ex was not going to put his life on hold or change it in any way to accommodate my new condition. It really didn't make an impact in his life at all). After my divorce and a brief stay at my mom's I moved in with my new husband. I now live too far away for my mom to be able to come everyday. It was time to let her get on with her own life. My husband takes care of me very well and now she can move forward. My mom was affected, my dad and sister was affected because my mom was with me so much. I am sure that they felt left out and abandoned. I feel guilty over that. Not only that they felt that way and I was "taking over" my mother but also because I really did take over my mom. I had to. I didn't have anyone else. I know my mom felt helpless because she knew what kind of pain I was in, she saw the sleepless nights and the pain of not being able to do for my kids and there was nothing she could do to help me with that. All she did for me and she wasn't able to do the one thing I know she wanted to do the most and that was to take my pain away. She wanted what every mother wants, to protect and shelter you kids, to take away their pain. I know with my own kids it doesn't matter how old they get, the instinct to protect never goes away. If I could take away any pain my kids are feeling I would. But, we can't. I feel bad when I can't take away the pain of a skinned knee or a broken heart. I can't imagine what it would be like to watch one of my kids go through what I go through everyday and know that there is nothing I can do for them. To know that the only thing I can do it to be there for them to lean on and just watch. How my mom does it, I just don't know.
For everyone who has had to suffer, stress out, feel left out. For everyone in my life who has been there for me, helped me, was a shoulder for me to lean on. I thank you from the bottom of my heart. There are not enough words to describe how much it has all meant to me. There is not enough time to write about everyone and everything that they have done for me. From surprising me with a scarecrow and pumpkins in my front yard just to cheer me up to loving me with all my problems and handicaps. THANK YOU!!!! I LOVE YOU ALL.
So, you see we are not the only ones who suffer and deal with things. Our families and the friends that do stick with us go through a lot also and deserve to be recognized.
Saturday, April 02, 2005
Freedom !!!
For the last 10 yrs someone has always had to be there when ever I went out. I was on crutches in the beginning and then in a wheelchair later on. Because of the RSD and the Fibromyalgia (that is a whole other story for anyone who does not know what it is. I will post on that later), arthritis & carpal tunnel syndrome(I know I have a lot wrong with me. I used to be somewhat healthy but once RSD set in so did a lot of other things) someone had to push me on my bad days and on my good days they had to be near. I tend to over do things when I finally feel like going out. I just kept going and all of a sudden I wouldn't be to push the wheelchair another inch. If I tried to move no matter how short the distance I felt like I would die, I knew I would die. Right there in the middle of Wal-mart I would be found dead if I tried to push myself even an inch (sounds very melodramatic I know but to me it was real. very real). My body felt like it was just shutting down. I would be stuck wherever that happened to be until my husband Joe or one of my kids would realize I was missing and have to come looking for me. My husband got me a cell phone and now when this happens all I have to do is call in the Calvary (unless of course there was no signal in that particular spot, then I have to sit and wait till I was found). Finding me in a store requires something like the game Marco-polo. I don't know how many times I would be stuck in a section of the store and would sit there and cry until someone would find me. I felt helpless, like a baby. I hated it.
I hated feeling helpless so much that it got to the point where I didn't want to go anywhere anymore so I just stayed home and this way I wasn't a burden to my family, especially my husband or an embarrassment to my kids (no, they never said I embarrassed them but I always felt like I did. I was a kid once too and I know how other kids can be when you are not just like everyone else. Having to push your mother through a store is NOT being like everyone else). I could not go out and just get my errands done. I had to pick 1 or 2 things I needed to do the most and that was all. If I tried anymore I paid the price for the next 4 days or so. This made things hard on my husband. I can't drive and haven't been able to since my accident, so after working a full day and driving over and hour each way to and from work I would need to go out. I had to go out more often to get everything done since I couldn't do it all in one trip. Not only did I pay the price for just going out, I felt guilty for making my husband have to go out so often. I didn't want to do this to him so a lot of the things that I wanted to do for me, like go to the craft store during a big sale I would just not mention to him and cross it off my list. I would just do the "have to" things and not the "want to" things. It got to the point where Joe was doing most of the shopping himself. It just became too hard on me and on him having to come home, get me, load me, the kids and my wheelchair up, drive to the store, unload me, the kids and my wheelchair, play numerous games of Marco-polo to find me. Many times Joe would be pushing me and pulling the shopping cart with our daughter in it. When it was time to leave he would have to load me, the kids and my wheelchair up, load the groceries up, drive home and do everything all over again. That was only if I went to just one store. How he managed going out with me as much as he did is beyond me. It seems more like he was performing an Olympic feat than a shopping trip.
Christmas shopping or Birthday shopping for my husband became a challenge because he was always there. He would see something on the check out counter and make comments like "why are you getting these?"or "who is this for?". That is when I discovered shopping on the internet, at least for all his presents. I have done 85% of my Christmas shopping online for the past 2 yrs. What a life saver, literally, for my husband and myself. The only problem with this is that I was not getting out of the house anymore. In a lot of ways I was happy about that. I know that it was unhealthy for me to lock myself away in the house but I just didn't care. I couldn't even get myself dressed most days so going out was just too much on me. Our house became my haven, I spend 90% of my time in my recliner in the living room. To me it seemed the perfect option, my husband could rest when he got home from work, the kids wouldn't have to push me or be embarrassed by me and I wouldn't "pay the price" for the next 3-4 days.
We finally got the answer to some of our going out problems. I just got an electric wheelchair...... WoooHooo!!!! I never thought I would be excited over something like this but boy am I ever. The first day out with it I was able to get through 2 big stores on my own!!!! Yippe !!!! One of those stores was my craft store that I was always crossing off my list of things to do. The only phone calls between my husband and myself on that trip was Joe calling me to find out where I was. I never realized how much freedom I had lost until I got a piece of it back. I can't explain how good it feels to be able to get through a store on my own after not being able to do it for almost 10 yrs. It was like being given back a little piece of myself. I want a much larger piece back but I will take whatever I can get.
I was real worried how I was going to get my daughter to the school bus next year and all the other things I am going to need to do with her as she gets older. This wheel chair has given me the freedom to take care of her. I know now that when that bus comes for my daughter I will be able to be there for her like a real mother. I was getting real worried how I was going to get her back and forth to the bus stop. I wasn't coming up with any ideas on how I was going to manage this. I was even considering home schooling her just so I wouldn't have to deal with the whole bus issue.
This wheelchair has given some of my freedom back but it has also added some problems too. I can't use it in the rain so if it even looks like it is going to rain, I have to use the regular chair. I can't use my cell phone when I am in the wheelchair. If I do it will destroy the insides of the phone somehow. It is big and heavy so it has to be taken apart and put back together everytime I use it. If we are just going inside a store for a short time or it is a small store then I use the regular chair. It is just too much work for Joe to have to go through all that for a 10-15 min trip. We need to carry both chairs when we go out because of all this and that takes up a lot of room in the car. This chair has given me back some freedom back but like everything in life it costs too.
I hated feeling helpless so much that it got to the point where I didn't want to go anywhere anymore so I just stayed home and this way I wasn't a burden to my family, especially my husband or an embarrassment to my kids (no, they never said I embarrassed them but I always felt like I did. I was a kid once too and I know how other kids can be when you are not just like everyone else. Having to push your mother through a store is NOT being like everyone else). I could not go out and just get my errands done. I had to pick 1 or 2 things I needed to do the most and that was all. If I tried anymore I paid the price for the next 4 days or so. This made things hard on my husband. I can't drive and haven't been able to since my accident, so after working a full day and driving over and hour each way to and from work I would need to go out. I had to go out more often to get everything done since I couldn't do it all in one trip. Not only did I pay the price for just going out, I felt guilty for making my husband have to go out so often. I didn't want to do this to him so a lot of the things that I wanted to do for me, like go to the craft store during a big sale I would just not mention to him and cross it off my list. I would just do the "have to" things and not the "want to" things. It got to the point where Joe was doing most of the shopping himself. It just became too hard on me and on him having to come home, get me, load me, the kids and my wheelchair up, drive to the store, unload me, the kids and my wheelchair, play numerous games of Marco-polo to find me. Many times Joe would be pushing me and pulling the shopping cart with our daughter in it. When it was time to leave he would have to load me, the kids and my wheelchair up, load the groceries up, drive home and do everything all over again. That was only if I went to just one store. How he managed going out with me as much as he did is beyond me. It seems more like he was performing an Olympic feat than a shopping trip.
Christmas shopping or Birthday shopping for my husband became a challenge because he was always there. He would see something on the check out counter and make comments like "why are you getting these?"or "who is this for?". That is when I discovered shopping on the internet, at least for all his presents. I have done 85% of my Christmas shopping online for the past 2 yrs. What a life saver, literally, for my husband and myself. The only problem with this is that I was not getting out of the house anymore. In a lot of ways I was happy about that. I know that it was unhealthy for me to lock myself away in the house but I just didn't care. I couldn't even get myself dressed most days so going out was just too much on me. Our house became my haven, I spend 90% of my time in my recliner in the living room. To me it seemed the perfect option, my husband could rest when he got home from work, the kids wouldn't have to push me or be embarrassed by me and I wouldn't "pay the price" for the next 3-4 days.
We finally got the answer to some of our going out problems. I just got an electric wheelchair...... WoooHooo!!!! I never thought I would be excited over something like this but boy am I ever. The first day out with it I was able to get through 2 big stores on my own!!!! Yippe !!!! One of those stores was my craft store that I was always crossing off my list of things to do. The only phone calls between my husband and myself on that trip was Joe calling me to find out where I was. I never realized how much freedom I had lost until I got a piece of it back. I can't explain how good it feels to be able to get through a store on my own after not being able to do it for almost 10 yrs. It was like being given back a little piece of myself. I want a much larger piece back but I will take whatever I can get.
I was real worried how I was going to get my daughter to the school bus next year and all the other things I am going to need to do with her as she gets older. This wheel chair has given me the freedom to take care of her. I know now that when that bus comes for my daughter I will be able to be there for her like a real mother. I was getting real worried how I was going to get her back and forth to the bus stop. I wasn't coming up with any ideas on how I was going to manage this. I was even considering home schooling her just so I wouldn't have to deal with the whole bus issue.
This wheelchair has given some of my freedom back but it has also added some problems too. I can't use it in the rain so if it even looks like it is going to rain, I have to use the regular chair. I can't use my cell phone when I am in the wheelchair. If I do it will destroy the insides of the phone somehow. It is big and heavy so it has to be taken apart and put back together everytime I use it. If we are just going inside a store for a short time or it is a small store then I use the regular chair. It is just too much work for Joe to have to go through all that for a 10-15 min trip. We need to carry both chairs when we go out because of all this and that takes up a lot of room in the car. This chair has given me back some freedom back but like everything in life it costs too.
Saturday, March 19, 2005
Hope
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.
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.
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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