It was not until recently that I felt empowered to share my story of living with and surviving arthritis. Unfortunately, since I was diagnosed at such a young age, most of my battle with arthritis has been centered on "fitting in" and "being like the other kids." I assume that like many others, my plight to a diagnosis was long, drawn out and taxing but more than that it was life altering. Sometime in 1997 just months after running in the Junior Olympics semi-finals I began having immense pain in my knees along with unusual fatigue. I had always been athletic and running was my life. I had been training since I was 8 years old and was improving in leaps and bounds. However, there was nothing I could do about how I felt. My body started rejecting daily track practices and meets every weekend. I just couldn’t do it anymore.
Physicians were at a loss and had a difficult time discovering the real issue. One physician attributed my symptoms to “growing pains” and decided that my knee caps must be taped into place. Having to sit out of recess in beautiful summer weather with ugly brown tape and gauze on my knees did me no favors as a 6th grader. Another physician just knew that if I received enough electric shock treatments on my knees that I would be cured. Luckily it did not hurt…but those treatments sure gave my knees an odd tingle! Finally, we went to a specialist who ran the appropriate blood tests and diagnosed me with Juvenile Rheumatoid Arthritis (JRA). My parents and I were ecstatic to finally know the root of my pain and fatigue, but our relief was short lived. The diagnosing physician boldly stated that if I kept running track then by the time I was 30 years old I would no longer be able to walk. And just like that my track career was over...indefinitely.
The next 16 years of my story is full of ups and downs, changes in diagnosis, changes in medication and PLENTY of changes in doctors. And the promises of an inability to walk constantly ringing in my head. Finally, at the age of 24 (3 years ago), I settled with a wonderful Rheumatologist that takes a very holistic approach to treatment and encourages me to exercise regularly...and sometimes to even run. Now, my official diagnosis is polyarthritis, which is any type of arthritis which involves 5 or more joints simultaneously and is usually associated with autoimmune conditions. I have also been diagnosed with fibromyalgia (long-term, body-wide pain and tenderness in the joints, muscles, and tendons), bursitis of the hip (inflammation), and costochondritis (inflammation of certain cartilage in the chest cavity). I take multiple medications daily to ease pain and systemic issues associated with my arthritis and other conditions.
Though it is a struggle at times, I remain optimistic because I have a milder case of arthritis and know my condition could be a lot worse. I am also fortunate to have family and friends that understand my needs. They understand I may be fine in the morning and plan to meet them for dinner after work, then start running a fever around 3:00pm and need to go home and rest. They understand if there are multiple events happening in one weekend that I will have to choose wisely. They just understand. I am also grateful for the Arthritis Foundation, Mid-Atlantic chapter and the wonderful work they do. It is so important to provide information and resources to individuals with arthritis and to also raise funds so we can eventually cure arthritis! In addition, their outreach has empowered me to share my own story with the hopes of being an inspiration and support to others.
Oh yeah! And I recently ran my first 5k in several years. It wasn’t easy and I paid for it some, but I refuse to let arthritis keep me down. Running is what I love so run is what I will do as long as I listen to my body, my Rheumatologist, and take the necessary precautions. One race at a time!
<3 Amina Lillie
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