My name is Kori Rimany. I am 16 years old and am a junior at The Gunnery. Five years ago I was diagnosed with RSD/CRPS.
In 2007, I jumped off of a step on the playground and fractured a minor bone in the side of my left foot. Everything seemed fairly normal, but after a few weeks in the cast, the pain began to get worse and changed from bone pain to skin pain.
My mom has always been the reason I am where I am today. She brought me to many different doctors until she found one who could give me an accurate diagnosis being CRPS. Through physical therapy, I was able to put the CRPS into remission, but that was probably one of the most difficult and painful parts of my life. There were many, many mornings when I would wake up and want nothing more but to lie in bed all day and try to move as little as possible so as to avoid causing any more pain. My mom did not let this happen, and although I hated her some days for it, making me go to PT each day is what put me into remission. At physical therapy, my therapist would desensitize my left leg by using different textured clothes. Wash clothes were the worst. I still get little shivers when I am doing the laundry.
Before being diagnosed with CRPS, sports were a large part of my life. I played soccer in the fall and spring seasons, and ice hockey in the winter. My now 18 year old brother Tyler and I were always very competitive with each other when it came to sports, so after my diagnosis, it was difficult for us to find things to do together that wouldn’t hurt me. He was one of the first people to embrace my new diagnosis, as he became very protective over me and my pain.
During the time I had been at Gunnery (my high school) up until the fall of my sophomore year, I tried to hide my pain from people, including my new classmates and teachers- people other than my immediate family. Being at a new school, I had that opportunity/option to keep my health from the people I interacted with. It wasn't that I was embarrassed of the CRPS and the damage it had left on my body, but it was more that I was afraid once people knew, they would look at me differently. I was afraid of pity. But it got to a point where I couldn't and didn't want to hide it anymore. I started using a cane on days when the pain was really bad, and often had what I call pain attacks..which are panic attacks triggered by a bad day of pain.
It took me a while, but I realized I just needed to tell people at Gunnery. I wanted to come full circle in my fight with CRPS and give to other teens the support which had been given to me, and which played such a vital role in my recovery from the disease. The fall of my sophomore year I gave a speech at school meeting explaining the disease and launching a cupcake fundraiser. The resulting support from the community made me further realize the importance of a support system. In the year since I launched the fundraising, I have been able to put together twenty bags for other teens affected by the disease.
Each bag is personalized according to information received about the pain patient. A typical bag contains comfort items that can include soft pajamas or sweats, all natural LUSH bath bombs, candy and treats, DVDS, books, or magazine subscriptions. All items are placed in a Vera Bradley tote bag.
Today, I am no longer able to play soccer or ice hockey, but I am happy to focus on my studies and yoga. I have come to accept that I am not the same person I was before I was diagnosed. My life and the activities that fill it have changed, but the pain I experienced has given me strength and perspective, both of which I am grateful for.
Posted on Thu, April 4, 2013
by David Garrison