Posted on September 20 2014
Hi, my name is Lorie. I am 52 years old and have Systemic Lupus Erythematosus (SLE). I also suffer from Rheumatoid Arthritis (RA). In researching lupus I discovered that I represent about 1% of the SLE population by having both lupus and rheumatoid arthritis. I feel unique in that aspect. I have been on treatment for RA which includes methotrexate, Humira, sulfasalazine, and hydroxychloroquin which fortunately treat SLE. As a nurse I know the seriousness of taking these types of medications. Without them though, I can't function. I started having skin lesions a couple of years ago along with a general feeling of illness which I have never been able to put into words. I then developed inflammation of my lungs, pneumonitis. I had wheezing and pain when I breathed. My blood work revealed a high ANA and low C4. I had active lupus. This made me look back into my past at my symptoms. As a child I had Reiter's Disease. I had microscopic blood in my urine and collagenous cystitis. I also developed gastrointestinal problems and was diagnosed with inflammatory bowel disease. I had to have a cardiac ablation for arrhythmias. My thyroid turned to Hashimoto's thyroiditis. In retrospect, I wonder if I didn't have SLE all along. My heart, lungs, kidneys, bowel and bladder, skin and joints have been affected by lupus. What I have learned is that despite being a nurse, I don't know enough about lupus and probably will never know enough about the disease. I do know what it is like to be in pain every day and to suffer acute flares. Lupus brings many different challenges to my life and impacts those that I love dearly. I know there is no cure for lupus but hope and pray that one day there will be a cure. In the meantime, I must be brave. It is hard to be brave and courageous but I know that I must be for myself, my family and for everyone else that has lupus. It is something I have to learn to live with and allow it to live with me! I will be wearing a bravelet to help remind me on a daily basis to Be Brave. I ask that you help me Be Brave as well by offering your prayers and support.