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 and cream to treat this.
As more time elapsed, it became much worse. Each successive 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, and I had to miss a semester of school. After years of ear and sinus infections, exhaustion and joint pain I was asked to see a rheumatologist. It was then that I was then diagnosed with systemic lupus erythematosus, or SLE. However, since that first diagnosis, I have had doctors tell me that I may have many other different lupus illnesses, and called my illness “lupus-like.”
Then, about 6 years ago, I had to have two major surgeries in three months’ time, including one for a precancerous tumor for which I see a specialist from Yale New Haven at Stamford Hospital.
I am only 45.
All this may seem incredible, but it has happened. I can’t express how much your support has meant to both my husband Chris and me. I go to doctors all the time and they tell me all kinds of things. My blood work is inconsistent and I am frustrated most days, and tired a lot. I work full time. However, my most recent blood work has shown my ANA levels at 204, and normal is 100-120 for SLE, and it was 204 for Sjogren’s syndrome.
I am hopeful that now I am on a path to remission, as my test results are now much more conclusive.
Knowing I have the support and love from family and friends helps a lot. Thank you for everything, you are truly amazing! It’s not easy for me to share my story—I do it because I care, and hope they find a cure soon. Lupus is a mystery and a puzzle that needs to be solved soon. There is no known cause and no known cure. That’s why I’m taking action in the fight against lupus. I’ve registered for the Walk to End Lupus Now New York for a seventh year and I hope you will support me.