Life with RSD
(continued)

But there are the things I can't control that are a result of RSD. To this day, I can't sleep without chemical assistance. I get headaches from the devil and have to take strong narcotics for them. I have track marks from my doctors, and a lump on the side of my foot. I transpose letters and words in my head, sometimes skipping over letters or entire words; I have chemically induced dyslexia. I can be talking to someone, and mid-thought, completely forget what I was talking about. I repeat myself for no reason. I repeat myself for no reason. (I couldn't resist that one.) When writing, I oftentimes mix up tenses or combine words to make new words that you won't find in a dictionary. Things happened during surgeries that should have killed me, and in the end, they will. Because I have RSD and take a lot of medication, I have contracted or developed a number of other diseases.
One of the worst things about RSD is that it spreads. It started in my left foot and crawled up my calf by way of my sciatic nerve. No thanks to my doctors, it was contained to my foot and ankle for over a year. Recently, in the past month, it has spread to my right hand. The one I use for everything, from writing to shifting to breaking boards. My physical therapist is working with me in attempt to strengthen both of my hands, because if and when it gets bad in my right hand, bad to the point where the dystrophy sets in and I can't move my fingers any more, I'll have my left hand to fall back on.
There are a couple of things that I don't understand about people who have RSD. In my opinion, they are easily defeated. A woman in northern California has the disease in her right foot, where it has been contained for over two years. She still has full use of her toes and ankle, but has confined herself to a wheelchair, and gave custody of her three children to her ex-husband, whom she left because he was physically abusive. I just don't get it. I've tried so many things to help with pain, to try to kill the disease, and to try to get my life back. I've had chunks of my spinal cord removed and sterilized. My spine has been injected with everything from Miller beer, to green dye, to ground up fish eggs mixed with milk (which I'm allergic to). I try so hard not to let it defeat me. If there has been an option available to me that could offer relief, I've tried it; but I have never let the opportunity limit me more than the disease has already done. From where I'm sitting, the only way I'll end up in a wheelchair is if I become paralyzed or become unable to bend my knees. Yet, one of my biggest fears is that one day my judgment will become so impaired that I will make choices like this woman did.
Another thing I don't understand about people who suffer from RSD is why they allow it to control their lives. I'm not supposed to walk more than four thousand steps per day and also not supposed attend more than twenty hours of school per week. I am supposed to use crutches in my daily life. Apparently, I don't listen too well. I don't let it control me, and I don't understand how grown adults can let it control them, or how parents can let the disease control their child.
This isn't the life I wanted. This isn't the life any one with CRAPS wanted. But somehow, it happened. I'm not going to kill myself because it hurts, instead, I'll complain and take Vicodin. I don't want to be treated special and I'm not doing this for attention. I think that everyone in this world should know what RSD is in the same way that they know what cancer or AIDS are. The suicide rate for people with RSD is 900% higher than any other group in the world. We need to do something about it. It just is not worth it to look the other way any more.

© Jill Michalek
2002