I thought it might be a nice addition to the blog to start collecting some of the onset and road to diagnosis stories from people so that others can read and possibly gain some great information from them. This will end up being its own ‘page’ on the blog in the pages bit just above here and I will be adding stories to it as they come as well as posting them on the main blog page.
I encourage you all, if you feel comfortable enough, to share your stories with me so that others can benefit from reading them. You can email them to me at kirsten -at- notstandingstillsdisease -dot- com (you have to write things this way or often spam emails get sent – silly spammers!).
Today, I am very honored to share with you all the story of the president of the International Still’s Disease Foundation, Melly.
Melly’s diagnosis of AOSD came at age 19 and as of 2012 at age 54 she is in remission. The rest of her story will be in her words.
I was born in 1958 and was very healthy as a child except for over-active lymph glands in my neck when very young and I developed an allergy to the sun around age 10.
In 1977, I had sudden symptoms of pneumonia one day but without clear evidence I was told. A bit later, I had an inflammation episode at an old injury site in my foot that was diagnosed as bursitis. Into the next year I started having symptoms of the flu with swollen glands, muscle pain, and painful joints. All of this came and went as the months went on into summer. When my knees swelled the size of softballs and I could not lift my head from the pillow without assistance I went to a general doctor and was told to go home and stay in bed until I was better. I was having high fevers a couple of times a day spiking to 105 degrees and averaging 102/103 degrees. They always happened at the same time in the afternoon and at night. I also started getting a rash on my back that was itching when hot. The doctor finally referred me to an internist.
I had lost a totaly of 28 pounds in just 6 months and had an enlarged spleen. The internist said it could be several things but I was very ill and needed to be admitted to the hospital that day. By the third week in the hospital, none of the tests had come up with a diagnosis for my illness. I was severely anemic and it was discussed I may need transfusions. I weighed 107 pounds at the time and I am 5’11” tall. I couldn’t walk but had a therapist come in daily to keep my joints mobile. A rheumatologist was called in and I was told my diagnosis was Adult Onset Juvenile Rheumatoid Arthritis. I remember he was so kind to reassure me they were not labeling me a juvenile. A few years later I saw it listed as Still’s Disease on my charts. I still have the same rheumatologist today and will always feel that he and the doctors I had saved my life.
Over the years, I met only two people that knew what Still’s was. In 2001, I got my first computer and the first thing I searched was Still’s Disease. It came up with the Yahoo support group that is sponsored by the International Still’s Disease Foundation. I sat and cried because of all the years of my loneliness. Then here was a group of others that had what I did and would understand my life.
Still’s brought with it not only illness but loneliness. A silent loneliness of pain and years of summoning inner strength to carry on living. Mostly I didn’t think I would be a good enough mother with this life of sickness. My daughter was 2, and I was a single mother, when diagnosed. There were many times of silent depression. Somehow I was able to reach out and tell those closest how I felt and I got help to carry on. There were better days to come. They didn’t come quickly or easily but they did and I will never forget that. I started seeing a therapist for bio-feedback pain management and then continued through the years for sessions to help with the adjustment of living life with disabilities.
Part of my doctors’ care was making sure I got physical therapy, occupational therapy, and anything else to keep the arthritis from crippling me. I had several doctors for the related conditions that occur with Still’s and they always worked together sharing information. My doctors also stressed the importance of rest and quiet with this disease and I learned how much it meant as time passed. I learned quickly different things made me worse or helped. When I got upset emotionally, my fever would spike. If I overdid too much, I would have increased inflammation in my joints and have to slow down. But if I didn’t move or do isometric exercises, my joints often froze and I wasn’t able to move them at all. Sometimes I couldn’t even feed myself. If I made plans for vacations or activities, I had to plan ahead or tell others I might not be able to keep them. These are just a few of the things I learned as I was able to function again.
The first few years I was the sickest. There were medications to be tried for months at a time and failed. By the second or third year, I was slowly able to get off the prednisone as a new drug at that time was introduced. It worked and slowly my disease started taking a course of remission and continued as they years passed.
When I felt better physically with less fevers and joint swelling, I started doing things I had [done] before I was sick. I went back to playing hard impact sports and dancing. It didn’t take long before my hips were deteriorated. I had no idea this could happen. I spent the next 4 years continuing physical therapy. I needed to use a cane and platform crutches to walk. The last two years I waited for UCLA medical center to get approval to start using newly developed hip implants. I was 26 at the time. Since then I have also had my right knee replaced. I share this because I never knew how aggressive the arthritis could be after/while being on steroids and having joints drained with injections. The medical term is AVN.
I am fortunate to have been in remission for years now. I have symptoms from the arthritis but the systemic activity of Still’s is dormant. Life has been one of adjustments; sometimes hourly, usually daily and definitely yearly, but that isn’t much different than anyone else’s. When I look forward, it is with hope that others won’t ever know the feelings of loneliness I knew and hopes that, with time and research, theses stories will become a thing of the past.
My heart holds strength for all those that live with Still’s to keep fighting!
Melly.