Getting a Diagnosis

I have Systemic Lupus Erythematosus, also known as SLE or just plain Lupus. I’ve attached two links that are great resources for further information. I’m not a medical professional and it is not my goal to educate people on Lupus but these are two sites that are very helpful for me; www.lupus.org and http://www.mayoclinic.com/health/lupus/DS00115


My story begins in 1996 when I was living the life of partying in college. I was out every weekend drinking and loving life and also suffering from knee pain and the occasional “asthma attack”. At the time, we thought I had relatively serious asthma but looking back we now realize that it was pleurisy (inflammation of the lining around the lungs). Anyways, the pain didn’t slow me down and was more of annoyance…unfortunately, that all changed in 1998 when I graduated and entered the work force.

The pain in my knees became almost debilitating and what was even worse for me was that I had a bald patch on my head that was about 2 inches in diameter. Loosing hair for any woman is devastating but only being 22 years old was horrific. At this point, we had no idea what was causing my knee pain and hair loss so the doctors started treating the two problems separately, while undergoing blood work for everything they could think of, including Lupus…everything came up negative. My hair grew back with treatment and my knee pain was controlled by meds but a new symptom arose and that was a “blister-like” rash on my face. I hated this rash but it became the answer to my prayers.
While at my doctor’s one day, he noticed the rash and together we started connecting the dots between all of my symptoms from the past 5 years. He admitted me to the hospital to undergo tests and to see a rheumatologist. In November 2001, I was diagnosed with Lupus.

On one hand, I was so excited to have a diagnosis and finally know what I was fighting but on the other hand I was devastated to have a chronic, life-threatening disease. I felt so bad for my future husband as the idea of him having to live with a “defected” wife for the rest of his life broke my heart. I think that is what I first felt when I found out that I had Lupus; how was I going to be a good wife to him?. I almost called off our engagement because of it. My husband, is the most supportive husband that I could ask for but I still feel bad to “burden” him with this, even 8 years after my diagnosis.