My podiatrist recommended that I see a different doctor who specialized in RSD. So finally after five months, I started getting the treatment that I needed. It took three lumbar sympathetic blocks and an epidural catheter, which was in for two and a half weeks. I didn’t have another flare up until about a year later. It was in my left foot and the pain was so bad that I couldn’t walk on it. My family doctor sent me to other doctors to try other non-surgical treatments. After a month I got tired because nothing was helping so I went back to the anesthesiologist that helped me the first time. He performed one lumbar sympathetic block and another epidural catheter.
I had another flare up six months later and two lumbar sympathetic blocks easily treated it. I had another flare up September '99 and I’m still being treated. I had one sympathetic block and then three bier blocks. My doctor tried to perform radiofrequency of the lumbar sympathetic chain. I also had a lidocaine infusion, that failed to help at all. My doctor put me on some medicine that really seemed to be helping. It’s called neurontin and is normally used to control seizures for epilepsy. A different doctor performed the radiofrequency and reduced most of the pain. But, in February '00 I went into kidney failure and had to be taken off of my medications. A repeat radiofrequency was preformed in May '00 that only lasted a month. I had an SCS implanted on Aug 4th, 2000, which seems to be working fine. November 14th, 2000 I had to have surgery on my SCS in order to reposition the wire, which was moving toward the skin surface. The unhappy update being a flare up in my right foot starting on April 23rd, 2001.
It has been difficult dealing with RSD. I missed so much school to go to doctors. No one could understand what I was going through. People who you thought were friends abandon you. Some people are only nice to you because they pity you, but most people ignore you because you’re not “normal”. Through the rest of high school I struggle to keep friends, but normally kept to myself to try to avoid the teasing that many people would give me because of my limp.
Once I started college things changed. The first week I still a catheter in my spine, but I didn’t know anyone yet so it went unnoticed. I kept my RSD a secret because I wanted people to like me for who I am, and not have my RSD effect their opinions of me. They secret came out when I had a flare up, but mainly my friends showed genuine concern and not pity. Things like RSD show you who are truly your friends.
At first, my family members thought that I was exaggerating and that maybe I was faking it to get attention. You know what, I wish that was the case. Thirteen procedures in a little over two years is not what I consider to be fun. One member now knows what it is like to suffer from RSD. She was diagnosed about a year ago. She would be my twin sister Jennifer and now we share more than the same birthday. I get a lot of support from her especially when the pain gets really unbearable. Sometimes the pain gets so bad that I have to cry myself to sleep.
RSD is also hard on your emotions. My emotions actually caused a flare up. I became very stressed because I was having trouble finding a job and then I had a huge fight with my mom, which pushed me over the edge. They next day, my RSD came back to haunt me. I have now learned that I have to talk about things when I’m upset so that my pain doesn’t come back.
Sometimes I can be very strong emotionally. I have gotten comments on the fact that people can’t believe that I don’t give up. I still try to do everything that everybody else does. I try to have a good outlook on everything, but it’s very difficult. Sometimes, I just have to break down and cry. Being strong emotionally is like working out; sometimes you just have to take a break. I think that it’s good sometimes to let your feelings out instead of keeping them inside. The people who truly care about you will be willing to listen.
