I was diagnosed with Lupus after I underwent surgery to remove a cancerous brain tumor. My doctor felt I wasn’t “springing back” the way I should and ordered blood tests, x-rays and an echocardiogram. I had four of the 11 symptoms necessary for diagnosis: pleurisy, pericarditis, low white blood cell count and a positive ANA (Lupus Foundation of America, www.lupus.org.) I was sick for five years before the diagnosis. Getting a Lupus diagnosis is often difficult. The symptoms can come and go and are similar to other diseases. (Lupus Research Institute, www.lupusresearchinstitute.org)
Lifespan with Lupus
In 1998 the average lifespan of a person with Lupus was five years. I was diagnosed in my 30s, the most common age. New drugs do a better job on the area of the cell that causes harm. I decreased my steroid use. I was able to quit Methotrexate which caused nausea and fatigue. I take Mycophenolate with no side effects and better disease control.
Best Lupus Websites
The internet is a tool to stay healthy. Three website devoted to Lupus give accurate information in plain language. The Lupus Foundation of America at www.lupus.org explains diagnosis, treatment, and local support for patients and families. Both www.lupusresearchinstitue.org and www.lupusresearch.org summarize research and how to participate in studies. The National Institute of Health website at www.nih.gov explains diseases and clinical trials.
Doctors and Lupus
It’s difficult for general doctors to manage Lupus. I was referred to a rheumatologist who reviewed all of my symptoms. I then saw a cardiologist, nephrologists, neurologist and a vascular specialist. I took notes and asked questions. When I left my appointments I felt confident I knew the plan.
Lupus, Diet and Supplements
A balanced diet is the first best line of defense. For Lupus patients this includes a diet low in fat and refined sugars. Whole grains are absorbed slowly and decrease fatigue. Dr. Weils Anti-inflammatory Diet Food Pyramid (www.drweil.com) helps me on food choices. I use the My Fitness Pal app for tracking nutrition. Based on my doctor’s research and an NIH study he suggested green tea extract. I take one 250 mg capsule a day.
Lupus and Exercise
My first goal is to do something every day regardless of pain or fatigue. Some days I only make one lap around the house. My second goal is to pull back when I feel good. My nature is to max out physically. I can stay active longer if I don’t push myself to exhaustion.
My biggest struggles are finding support from others facing similar challenges and feeling I contribute to the world. My local chapter of Lupus Foundation of America gives me support through meeting, phone contact and email. Giving telephone and email support to others who are housebound helps me give back.