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Stories of Courage and Hope for those living with Lupus

Carolyn B. – Diagnosed at age 35

In 1993, I was diagnosed with lupus. My first experience with lupus began in my hands and feet, I started having severe pain in my hands and swelling in my feet. I sought help from my primary doctor and explained how I had been feeling. After the examination, he concluded my condition was from arthritis and prescribed medicine. After taking the medicine for a month, the pain was still severe. I went back to the doctor and asked to see a specialist, but he wanted me to try another prescription which did not help my problem. After six months of back and forth and my persistence to get a referral, I finally got an appointment to see a rheumatologist. I know my body and it was giving me signals that something wasn’t right.

My doctor sent me for blood and lab work and she also asked me to write a journal every day of my meals and how my joints felt during the morning, noon and night. My journal was a blessing as it helped me to identify foods that caused me greater pain, such as spicy foods, sodas that contained aspartame and foods that caused inflammation. My doctor invited me to a Lupus Foundation of America conference where she was one of the speakers who talked about the newest medicine research for lupus. Life with lupus became manageable for me after that conference.

In January of 2003, my life with lupus changed. The illness caused deformities within my fingers. Because of the severity of my illness, and the pain I experienced, I was forced to retire early from my profession. In spite of all my setbacks from hand and foot surgeries, I was still motivated and determined to work toward turning my dream of becoming a children’s author into a reality. Despite my challenges I stayed in the race. My quality of life improved a little as I finally accomplished my dream by publishing my first children’s book in September of 2019. My joy is to inspire others. Life with lupus is manageable! I’m living my best life with lupus, having just finished my second manuscript!

(Lupus Foundation of America)

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