Brett - Diagnosed Age 17
What makes my life with lupus unique? I grew up a normal kid, two siblings, a single mother, played sports, hung out with friends, never had a concern or thought of where my life would take me along with all of the complications and restrictions that continue with my future. When I was 17, after swimming a 100-meter race outside in 90-degree heat, my mom noticed as I got out of the pool that my fingers were as white as ghosts, and then they turned red, and dark blue. To me, it wasn't a big deal, I had been dealing with that issue in my hands for at least three years. I thought it was just poor circulation. My mom had taken photos to show my doctor, and we later found out I had Raynaud's, which led to being tested for other possible diseases.
August 28, 2010, that date will forever be seared into my head as it’s the date I was diagnosed with SLE. At the time, the word lupus didn't phase me, partly because I didn't know what it meant nor did I really want to know more about it. Knowing what I know now about lupus, I wish I would have taken full advantage and savored the life I used to have compared to the life I'm living now. Since I've been diagnosed, I've had inflammation (pleurisy) in my heart and lungs for at least six years now. I haven't been able to sleep flat, walk up stairs, run, or swim without grabbing my chest and gasping for air. I've been on prednisone for six years to help my chest pain and because of it I've developed stretch marks that look more like scars all over my stomach, legs, and under my arms. I'm embarrassed to even look at my body these days. I've had a wide list of issues since being diagnosed. I'm 25 years old now and my most recent dilemma is whether I should proceed with a chemotherapy drug or not. If I go through with the drug I could potentially lose my chance of having a biological child. If I don't, I could potentially run the risk of kidney failure. This disease is exhausting both physically and mentally, but I'm not a quitter, I never was and never will be. I will just tackle the next issue as it comes my way.