Lupus Awareness- SLE

During the last few years I have had a lot of changes. Scleroderma of my esophagus, manifestation of Lupus in my lungs, Autoimmune Hepatitis and Autoimmune pancreatitis. I made a life changing decision to have gastric bypass to help my breathing and I am waiting to start Imuran for rheumatoid arthritis, Autoimmune Hepatitis and SLE. Multiple hospital stays, surgeries and transfusions. These are just some of the things I have been LIVING with. Everyone who knows me knows I am STRONG even if it is just on the outside. This journey started when I donated blood at the gym in 1991. I was training with a personal trainer and my best friend. The training routine was brutal because I had big plans. Whether it was roller blading 26 miles down A1A along the beach from Boca to Fort Lauderdale or running until I couldn’t walk and then lifting weights daily… I worked hard. It all came to a screeching halt after I donated blood. I was sent to Rheumatologist and Hematologist right away. The only regret in my life is that I was told I could no longer train. And I listened. I have lost a lot. My ability to work as a nurse is probably the biggest. I LOVED my job. There are so many things from the minute I wake up in the morning until I can finally get comfortable enough to fall asleep at night that I choose to push through and do what I can. Since then I have defied what those Doctors said. I have two beautiful children, I have been a Girl Scout Leader, a volunteer at my children’s Elementary school, volunteered at my church, volunteer for the Military Support Group, I have a hobby of photography just to name a few. Have learned more about the human body and blood then I did in nursing school. I can identify signs that I am going to having a flare up and I can tell when my levels are low or high. I know when it is a MUST that I rest. I have learned to respect my body and all of the organs involved. The fact that I can’t wear contact lenses because of dry eyes, inflammation and nerve damage in my eyes is annoying. The fact that I have permanent conditions related to Lupus is accepted. I know that sounds crazy but I have accepted that this is what I was given and I can choose to sit and feel sorry for myself or I can do the best I can with what I have. Sharing a very small piece of my story I hope I can motivate someone else to learn to respect your condition and live your life. I want to bring awareness to this horrible disease.