It all started with a sun rash that appeared after spending a week at the beach in the early 1990s. My dermatologist said I had sun poisoning. That seemed unusual, as I have spent many years at the beach before without any issues. At my next visit to the dermatologist, I was diagnosed and treated for rosacea, and received antibiotics to treat this. Each year, my butterfly rash has grown much more pronounced, and I often did not feel well after spending too much time in the sun.
Then, while in college in the mid-1990s, I had a serious situation in which I was hospitalized for a week with pneumonia. After years of infections, exhaustion and joint pain I was asked to see a rheumatologist. It wasn’t until 2010 that I was then diagnosed with systemic lupus erythematosus, or SLE.
In my case, lupus is affecting my skin and joints. I have trouble with every day activities like getting in and out of the tub. Some days, combing my hair is a challenge because I can’t lift my arm. This is very frustrating to me, as I can’t do the things I used to love to do such as play the piano, ski, run, or meet the demands of my job.
Support has been critical to improving my health. I am grateful to my family. My husband, Chris, especially for being with me every step of the way. Shortly after my lupus diagnosis, we decided to get a dog, a golden retriever named Marley. Marley, who has survived illness as well, has been my constant companion. He is a special dog who is very sensitive to flare ups. He knows when you don’t feel well and will lie next to me when I am sick.
This is why I raise my voice about lupus to help find a cure. I joined the Lupus Foundation of America (LFA) Walk to End Lupus Now Walk Committees, and I am an LFA Ambassador. I wrote articles in the local newspapers, two radio interviews on John Voket’s radio show on 95.9 The Fox, a radio interview on WPKN and even a local television station interview with channel 8 WTNH. Recently, at the LFA’s Advocacy Summit in Washington DC, I met with my representatives to share the struggles of living with lupus and the critical need for research.