The end of an active life?
(a former health-club worker tells her story)

I used to be an active person. Before all of this happened I use to run a front desk at a health club. I had my own personal trainer and life was great. My husband and I used to coach our children in both Baseball and Softball. Now it is just he - and I am the scorekeeper. We used to go fishing all the time and run on the beach. We were living the American Dream. I had given my husband a son and a daughter. I had a great job and we didn't really have a care in the world. Until that dreadful day- July 10th, 2000. That's when our world came crashing to a screaming halt. I went in for surgery to repair tarsal Tunnel/ Plantar Fascaitis in my left foot/ankle. Boy was that a big mistake. If I could do it all over again, I never would have had the surgery. I was told it was an easy procedure. I would be up on my foot in ten days, back to work in eight to twelve weeks. Well, the day after surgery I knew something was terribly wrong. My foot was burning and the toes were blue. So I called my surgeon and he said it was all a part of the recovery so I believed him. That is what we do, we trust our doctors; they know best; they are the ones who have done these procedures. We have faith in our doctors, obviously because we trust them with our lives. I was referred to this doctor. He had done surgeries on several of my friends and their surgeries went well, so why wouldn't mine, right? For me the battle was a hard one. Yes I got a diagnosis but went untreated for a year because I had to fight worker's compensation. It was their doctor who pretty much won the case for me. He is the one that told the judge that my original injury was work related and I now had developed this disease. He stated that I would need years of treatment and would be on medication for the rest of my life.

Now we fast forward to today. My left foot has atrophied in the down position. To look at my left leg, it looks like a child's, though the right is a healthy looking foot and leg. I have been using crutches for the past three years. I even have a wheel-chair that I had to use for three months because back in November of 2002 I fell down my steps and tore the ligaments away from the joint in my good foot and had to wear a cast for a few weeks so not only could I not walk on my left foot (due to the RSD) but now had no use of the right. Boy what a life, huh?

My pain is very hard to describe to others that don't live with chronic pain. It always feels like someone is jamming a hot poker into my foot. It is a constant, burning, throbbing pain. I have internal air conditioning. No matter what the temperature is outside my left leg from hip to foot is always cold.

My average day starts at around 6 in the morning. I wake up and it takes around an hour for me to get out of bed. I need help first thing in the morning getting out of bed. My leg is numb so if I tried to jump out of bed I would hit the floor. I've done it several times. I go downstairs and try to straighten up but it is hard. My two kids Matt and Lauren do most of the daily household chores. They help with everything. I turn the computer on to see who from my support groups has emailed me or is just in need of a shoulder to cry on. I spend a lot of time answering emails. Being I can't sit at the computer too long it can take me up to 6 hours just to sit and answer the emails I receive on a daily basis.

My husband is great. I hear from him four to five times a day. Just to make sure I am OK. I sure did luck out when I found him. I try and catch a nap during the day but that rarely happens. Then it's dinner and family time. I head up to bed at around ten, but don't fall asleep much before 3 and then up at 6. This has been my routine for the past three years. I am actually getting more sleep now then at the beginning. And of course there are the numerous doctors' appointments all through the month.

My medication list consists of: Trileptal for the burning. Zanaflex or Flexiril for the spasms, Methadone and Dilaudid for the pain, Coultricine for the Fibromyalgia, and I take Elavil to sleep. I have also been using Lidoderm patches.

Before I was diagnosed with Reflex Sympathetic Dystrophy my family thought that this was "all in my head". I was so happy to hear that there was a name for what I had. I knew that I wasn't crazy. The pain was real but needed a name to go with it, so that I could go to my family especially my mother and stepfather and say "see its real, my pain is real". I'm not faking. This is a real disease. I have a name for it and everything. I have to say that my mom really felt guilty. She was listening to my uncle who was a chiropractor and he had her believing there was nothing wrong with me. Since being diagnosed and her buying a computer she has been doing research on RSD. She even joined a support group for family members.

As for friends, I lost many. In fact I lost most of them but I look at it this way. If they were truly my friends then they would understand and accept me for who I am. As long as I have the love and support of my family at home and online I'll be ok. My husband Joe and I have two really close friends. Their kids and ours are close too, which makes this a great friendship. We met after I developed RSD so they only know the "new me" and they love and accept me- crutches and all. Accepting one's faults no matter what they are is a friendship that will last a lifetime. Joe and I are in the process of buying a home. And guess where it is? … four houses away from our friends, who were the ones that told us about it.

People are always looking at me funny. And I know exactly hat they are thinking." She doesn't look sick" She's probably just faking it. Yeah OK, I like the fact that I have been on crutches for three years, not working, not sleeping, living in this pain, not leading a normal life. Yes there are others out there who may enjoy it but not this girl. This is not how I dreamed my life would be. Yes the getting married and having children was part of the dream, but this disease has been a horrible nightmare. I keep thinking that one day I will wake up from this horrible dream. But then reality sets in and I realize that these are the cards I was dealt. Anyone want to trade hands? I got this disease for a reason. Why yet I am still not sure. Maybe I was picked so that I can help people. Who knows why, but I have meet some wonderful, caring people in the process and for that I am grateful. Some of my best friend I have met right here online through the support groups.

On top of having RSD I was just recently diagnosed with Fibromyalgia and multiple tendonitis through out my body. Like living with RSD isn't bad enough - now let's add a disease that makes me feel like I have been run over by a Mac truck! No matter how much sleep I get I always feel tired and other parts of me hurt, not like the RSD pain. It is a different pain. Several people, as well as my doctor, have told me that RSD and Fibromyalgia run hand in hand. So eventually I was bound to get it, I was just hoping it would have been much later.

I have to say that I have been fortunate enough to be treated by a great group of doctors. I have been through quite a few procedures for the treatment of RSD. I have had 15 Lumbar Sympathetic Nerve Blocks; a Bier Block (worst experience of my life); a trial Spinal Cord Stimulator (which my body rejected) and a ton of different medications until we found the right combination that I am currently taking.

I do have a question for all of you, if you don't mind answering it? How do you deal with your chronic pain? I mean other than pain meds, what do you do to take your mind off your pain? For me I like to do scrap booking. It relaxes me and takes me back especially when I am looking at old pictures, to a time when life was so much easier.

© Paula Sorrentino
2003