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Our Stories: Who We Are and Where Our Journey Has Been
- Jordan's Story
Hi, I'm Jordan, the founder of RSD in Motion. After struggling with RSD I know that there are hundreds, if not thousands, of people roaming the world like I once was searching for answers to their bizarre and severe pain being turned down with answers of only, "Maybe you should see a psychologist because I think it's all in your head." If not saying it that gently, then, bluntly with my personal favorite, "You know - I am a bone doctor, I don't cure mental disease." It is heart crushing to think that your life is filled with certain psychological pain that no one can understand and even worse to second guess what you know, or at least believe, to be real. I can relate to that shattering feeling since I have had reflex sympathetic dystrophy since the age of two and a half, but unfortunately, it wasn’t diagnosed until the age of twelve. I lived growing up as a pretty normal kid until I fell (jumping off of your dresser with the thought that you could fly does count as a fall, right?) at two and a half years old and twisted my ankle. I resorted to months of crawling around because it hurt so badly. I wouldn’t let people touch my ankle or put on my shoe – when we tried, I screamed in pain. After a few months, I was fine and got back to life as a normal kid until I was twelve. A knee sprain sent us into a word filled with questioning, intense pain, and crutches.I soared from life on the basketball court to life on crutches and a wheel chair in months. To get try to escape the burn of RSD, we tried too many physical therapy visits, tons of nerve blocks, an arthroscopic surgery and too many treatments through arrogant orthopedic doctors, totally unaware of the fact that it was under their job description to, at the very least, know what RSD is. Finally, after two years, we went to Cleveland Clinic to find out that our problem had a name to be diagnosed under: RSD. Doctors around our area had no idea and even "proved" that I didn't have RSD, only to have the intern of our Cleveland Clinic Pain Management Department come in and take one look and say to us, "Yes, this is RSD." A tunneled epidural catheter and 2 weeks of inpatient care later, the TEC failed to provide very much amount of pain relief. We were sent to rehabilitate at the Chronic Pain Rehabilitation Clinic at Cleveland. Seven weeks there and my muscle atrophy started to slowly regain strength but I couldn't handle the pain being shot at me in the twenties on a scale of one to ten (I'm sure many can relate!). Still bound to crutches, I was sent to get a spinal stimulator with Dr. Stanton - Hicks (the doctor originally diagnosing RSD). It was a temporary three to six month spinal stimulator. After being taken out after a month, I finally heard the diagnosis that I had been waiting for: remission. If there is any doctor who believes that RSD isn’t an organic disease but a psychological one, read my story and believe. A two year old doesn’t have control over her psychological thinking or motive. Why wouldn’t a child with RSD be motivated to find the freedoms that they once had? Even as a blossoming teenager, I couldn't stand the dramatic changes that my life took: from an athletic girl and highly successful student to being the mocked disabled girl who struggled in school with failing grades. After the remission, I am back in school with great grades and loving every minute of my extracurriculars. It was a long battle and without caution, many will inevitably follow; as for now, life with intermittent pain in the low one digits is just fine with me , although I still face challenges that force my former dreams to resort to new ones. Instead of consistently being on the basketball court, I'm changing the world. I feel as if this happened to me for a reason and that I have the opportunity to grab on to, as if that inner pulse of determination that forced me to persevere through years of pain is behind me again, now screaming, "Change the world, Jordan! Change the WORLD." Better days and hugs without hurt, Jordan ~ For more information on Jordan's story, e-mail her at RSDinMotion@hotmail.com. She will feel free to answer any questions about her treatment and can provide contact numbers for the Cleveland Clinic Foundation or if you just need to talk. -Lauren's Story Hi everyone! My name is Lauren, founder of RSD in Motion Illinois and North Carolina pages. My RSD began after having surgery on my right ankle. I was in a cast for two weeks and on crutches for three months. Right out of surgery I was showing the signs of RSD, but I was told that they symptoms were from the surgery. Needless to say that it was not just a hard recovery. One month after the surgery, I was diagnosed with Reflex Sympathetic Dystrophy. For well over a year I tried to find a doctor that was knowledgeable enough to treat this disorder. During this time, I was told “the pain is all in your head” and “I’m sorry, but there is nothing I can do for you” over and over again. This was beyond frustrating. No one believed that anything was wrong and on the rare occasion that someone did acknowledge that something was not right, they just gave up. In April, 2006 I finally found a doctor that I truly believe is going to be the one to put me into remission. I have been working with him for a couple years now and am happy with the care I am receiving. I am still struggling with RSD. Everyday is an uphill battle. I am attending college and majoring in Psychology and pre-medicine. I am not a victim of RSD, I am a survivor. -Lauren- If you would like to hear more about "Lauren's Story", please e-mail rsdinmotionIL@hotmail.com - Colleen's
Story
Colleen's Story Coming Soon! -Amanda's Story Hi! I'm Amanda and my story starts four and a half years ago, as a normal eighth grader, after going to the movies with my sister and father. That day, I went back to my house and took a nap. When I woke up, both of my hands were in immense pain and were locked from the wrist down. I went from doctor to doctor, trying to find out what was wrong with me until a doctor in Erie told me I had Juvenile Rheumatoid Arthritis and sent me to a Rheumatologist at the Cleveland Clinic. Once getting there, the Rheumatologist knew within five minutes what was wrong and diagnosed me with RSD. I didn't really know a lot about the disease and my doctor told me that I would have to go to the pain clinic in Seattle unless I could find a physical therapist at home that could treat me twice a day, seven days a week. My mother searched for a physical therapist who would be able to accommodate my needs and we found someone that worked out of his home and was able to treat me. After seeing him for about 6 months, my RSD was put into remission. Over the next two and a half years, I rarely thought about the RSD and was unaware that it could come back. However, on January 26, 2006 as I was walking up my driveway, I slipped on ice and broke my right leg. At first the pain was just the normal pain associated with a broken leg. After four weeks, my cast was changed and this was when my pain started to increase. After about ten days experiencing the burning pain that I was, my school nurse called my mom and expressed her concerns. We went back to my doctor and he took the cast off, put me in a walking cast and sent me to physical therapy. Knowing my history, I chose to go to the same physical therapist that I had gone to before. My physical therapist recognized my symptoms, and although I didn't have an official diagnosis of RSD, he started to treat me as an RSD patient. After going to the therapist for about a month, my pain started to spread up my leg. Once the pain had traveled from just my ankle to above my knee, my therapist knew that I wasn't progressing as I should be and told me to go back to the Cleveland Clinic. There, I met with a pain management doctor, and he wanted me to go in for a lumbar sympathetic block the next day. I went in and had no relief from the block. As I was in the recovery room, he told me that the next step would be a tunneled epidural catheter (TEC). It took about two months to schedule the TEC,and in that time, my pain continued to spread up to mid thigh and into my hips. Then the day came where I would get my TEC. From the TEC, my pain level dropped from a constant 10 down to a 6. However, after complications, the TEC had to be removed and I required hospitalization for the next two weeks. From that point on, I searched for other doctors, for any hope that medicine had advanced enough and that someone would be able to help me. I went through four more lumbar sympathetic blocks, each providing me with little relief. In November of 2006, I found myself back at the Cleveland Clinic, ready to try anything. I was told by one doctor that my only chance of recovery was with a Spinal Cord Stimulator. I went through the psychological review for it and everything. I next met with Dr. Stanton-Hicks at the Cleveland Clinic. He told me that he could put in an extended trial for the SCS and he would send me to the Children's Rehabilitation Center for a two week period of time. April 27th I had the temporary SCS implanted and the 30th I started the two week long rehabilitation program. At that point, I had worked myself down to using a cane in the past month, after being on crutches for almost 15 months. By the time the two weeks were over, I was off of my cane completely. I was planning on keeping my SCS in for awhile longer, however on May 21st, we thought I had an infection from it and it was removed. As it was removed, my pain level increased from a 5 back up to the 10 I've been at for the past year and a half. I am going in again soon to talk to Dr. Stanton-Hicks about implanting a permanent SCS to help control the pain. Although my story is still very much happening right now, I believe that I will be able to have a much lower pain level and hopefully one day achieve remission. |
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