Introduction

I am the spouse of a Chronic Pain patient. My husband has had Reflex Sympathetic Dystrophy since December 2005. It started as an infection in his foot. This infection was treated and then the pain would not end. This was the beginning of our chronic nightmare. The nightmare continues with poor health care here in Tennessee for those who are not able to work due to this disease. Delay in the initial diagnosis by the PCP was the first problem. The doctor was not familiar with the symptoms of RSD, and minimized our complaints. We recognized the problem was with the doctor when he would not make a referral to someone that might know what was going on. We faked that we had insurance to get into an office that would see him. We really didn't know what was wrong, we thought maybe it was something wrong with the bones, and saw a bone doctor. This doctor knew right away that it wasn't a bone problem, and made a referral to a foot nerve doctor. After several treatments of ankle blocks, he made the diagnosis of Reflex Sympathetic Dystrophy approximately March of 2006.

This was also the time that his performance with work deteriorated. He loss all jobs that he had. His employer, a well known automobile dealer here in Murfreesboro TN, also the owner is the head of the largest non-profit agency in the country, fired him. They had zero tolerance to accommodate him so he could take a day off to get medical treatments. This employer also said he was faking it, to get time off. Of course here in Tennessee, you can fire someone for any reason.

No work for a man isn't a good thing. That's just one problem. No one outside of our immediate family can fathom what we deal with on a minute to minute basis. I'm so thankful to know that there are people out there who actually understand what we go through. So what? When our government doesn't want to recognize it! What about the support that we need to get through this ? I'm talking about financial support. As the only working parent of three children, I need some assistance. I feel like I am a single parent of four, one husband and three children. I'm doing it! and I'm going to college full time, so it's possible to continue life when your spouse has a disability. The most challenging problem that we face is disability BS as I call it. I actually have faith, because this isn't going away, and persistence always pays off. I know that we will win in the end. I do realize that the government doesn't realize that even once we get some financial assistance, our daily nightmare doesn't end.

For example, having a husband that is chronically doped up, or complaining of something hurting at various times in the day. It takes much longer to complete simple daily living task, such as dressing, and showering, moving,walking,and not driving. I have to drive everywhere. I never get a break.

I'm going to try to focus on how this disability affects the well spouse. I am not going to write about RSD, that can be found on a RSD website. I am not going to write about my husband because really that is his business, and if he wants to blog he can. I really want this to be my space to document how I feel dealing with another illness. This disability has shattered my thought on what life looked should look like. I now have to accept what is, and learn to live my life around the disability.

I had anger, lots of it. Sometimes it surfaces again, and I never know when it will come up. I try to keep myself as busy as possible moving forward with my life, because the disability of my spouse feels like a lead weight around my ankles. I have learned to move with this weight in my life pretty well, none the less it is still there. It has imprisoned us.

I have sadness, because it is sometimes difficult to see another pain, and selfish because I can only feel how it affects me, when I should really learn to be more supportive for my spouse when he needs me. This is very challenging for me, to be emotionally supportive when I feel that I'm being economically supportive, I withhold the emotional part out of needing something left for myself. Sadness because I feel that others do not understand, and for the dreams that he had for himself that will never come. Wanting more always, and learning to accept what we have.

I am thankful for my life and our blessings. This I can say despite all this that we endure, I am still blessed. Today was a good day, and we made it through.