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.