When I was ten years old I was at soccer practice and dislocated my knee. As my knee was supposed to be healing, it started hurting worse, becoming even more swollen, and discolored. Months went by and countless doctors could not figure out what was going on. The pain was no longer just in my knee, it had spread to my whole leg. No matter what tests or imaging were done the mystery of my pain remained. After a year I was sent to another doctor who was able to diagnose me with Complex Regional Pain Syndrome. CRPS is a rare, painful nerve disease. Despite having the correct diagnosis many doctors do not know how to treat CRPS.
When I was 13 my CRPS spread to my right arm. My pediatrician, who had become my primary treatment provider since my diagnosis, sent me to the Stanford Pediatric Pain Clinic where I could see doctors who specialize in CRPS. Since I started treatment at Stanford, my pediatrician has worked closely with my specialists so I could receive the best care possible. I have had many ups and downs with my nerve condition but, as I was making progress a trip with my youth group caused set backs.
I was in New Orleans with my youth group when everything changed. Out of nowhere my pain skyrocketed, sadly, accompanied by weakness and swelling. After coming back and getting in to see my specialists, it was decided I needed the intensive pain rehabilitation program called PReP. Unfortunately my insurance did not want to approve the treatment. As I kept regressing, my parents and pediatrician fought tirelessly for me. After three months my insurance let me start PReP.
I am 17 now and in PReP where I am learning ways to better handle my condition, while keeping the independence that I have. PReP is an amazing program, but living three hours away I worried about finding somewhere to stay. The JW House has been a blessing. After long days of treatment, coming to the JW House feels like coming home. I get time to relax and recuperate from my day. Having a meal read every night and a room to stay in every week elevates stress I would have had otherwise. I am so thankful to the JW House for helping me in my journey. I have had CRPS for 6 years, but I am finally taking my life back. Just because CRPS has slowed me down, doesn’t mean it will hold me back forever.