Providing Answers, Support and Hope in Pennsylvania, Delaware and Southern New Jersey
Meet Michelle - Lupus Story
Thank you Michelle for sharing your experience!
"My name is Michelle and this is my story.
After living many years with unexplained illness which began in early childhood; in 1989 at age 21, I was finally diagnosed with SLE (Systemic Lupus Erythematosus). My diagnosis did not come easily. For many years, I saw many physicians including a Rhuematologist who missed the lupus diagnosis. Some physicians even said I was mentally causing myself to be physically sick. It wasn’t until I was in college and I was listening to a student read her paper on lupus that my mystery would be solved. The student spoke about the physical joint pain, the endless fatigue, times when it hurt to breathe so badly, it warranted a trip to the ER followed by a lengthy hospital stay, the random body rashes, and the inflammation that seem to move freely throughout her entire body. She spoke about how there would be days she felt normal but then out of nowhere she couldn’t get out of bed. I thought to myself all of that is me. With the help of that student I was able to obtain a proper diagnosis and begin treatment.
My lupus journey has been met with many challenges. 2013 was the first year of my life without any overnight hospital stays. I have had several surgeries and countless hospital stays. I never took vacations until 2014 because of my need to save all my PTO time for when I was sick. There have been times in my adult life where I physically could not walk, bathe, get up or stand without assistance. I spent many years literally fighting with my body to cooperate. Finally though trial and error, treatment begin to work. In 2011, I promised myself I would never walk another Lupus loop, because I would run it.
Unfortunately in early 2012, I would be back in the ICU with two back to back surgeries; less than six weeks apart. How was I going to run the loop now? With the encouragement of my surgeon and the running community, I ran the 2012 lupus loop. In 2016 I became part of the one percent when I ran my first 26.2 miles to complete the Philadelphia Marathon. I have since run many half marathons countless 10 and 5ks , the Broad Street 10 miler every year and I continue to run races internationally yearly. Running with lupus is painful but any type of physical activity can be painful when you are dealing with lupus.
I have learned that in order to succeed with lupus, three things must happen. I must educate myself about lupus and how it affects me, I must take care of my body by eating moderately healthy with regular exercise, and I must self advocate. I have learned that although I have lupus; my purpose is to use my diagnosis to help others battling lupus. I am currently a lupus ambassador for the Tristate. But even before officially stepping into that role, I have always been actively helping others with lupus and other chronic illnesses. I am currently employed by Amerihealth Caritas; almost 15 years. I also volunteer as a Certified Official of USA Track & Field."