Rhonda Creely

 

 

Hello. My name is Rhonda Creely. I was diagnosed with AOSD in May of 1994. I had been sick for a long time before I received the diagnosis. My story really begins in 1992 when I became ill with shingles. I had a very hard time getting over it. A few months later I had back surgery for a slipped disk. In the summer of 1993, I suffered from the worse fatigue I had ever known, and had a leg rash. Since the rash didn't itch, I didn't think much of it. In the fall of 1993, I went to see an ophthalmologist because of an eye problem. He found vasculitis in my eyes. He noticed the butterfly rash on my face and sent me to a medical doctor. At first it was thought that I had Lupus. My ESR was very high, and the fatigue was awful.I was also experiencing fever in the afternoons and night time. It seemed I spent almost as much time in the hospital and doctor's office as I did at home. After months of testing, my doctor still couldn't seem to find the answer. Around February of 1994, I began to have horrible arthritis pain, and within a few weeks, had to use a walker to get around. I was so depressed. My doctor was concerned and got me an appointment with the best rheumatologist in the state. After a week in the hospital, I was finally diagnosed with Still's Disease. I had never heard of it, but at last I had an answer. I was treated with prednisone, methatrexate, plaquinil, and folic acid. In a short time, I gained up to almost 200 pounds. I was very sick, and spent much time in and out of hospitals. I also went through I personal crisis as my home broke up when I was my sickest, which really didn't help my condition at all! These past six years have been a roller-coaster ride. Finally, over a year ago, I was told I was in remission. I also lost 80 pounds. I have been off prednisone for a year. I had to get off the methatrexate, and was put in Imuran instead. I have been taking glucosamine/chondroitin for several months, and it seems to help the arthritis. I really thought AOSD was all behind me, but I was wrong. Recently, I began having trouble with my right eye. It started twitching, and has not stopped for over three weeks. It also has become red and swollen. I have also noticed that familiar feeling of fatigue, and joint pain. I just went back to the doctor, and found     out I am no longer in remission. I am now taking Vioxx, along with my other medication. I have to admit this flare caught me by surprise, and I am disappointed. It also spiked my interest again in the disease. That is how I found this website. I have not had the internet very long. I just wish I had found this site six years ago! Just reading about others going through this helps. I have never met anyone else who has AOSD. I'm glad I have found others who really understand.

Sincerely,

Rhonda

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