Lupus...what do I do?
On July 2015, I made an appointment with a rheumatologist. My blood work, about seven vials worth revealed that I was ANA positive. Antinuclear antibodies (ANA) are a group of autoantibodies produced by a person's immune system when it fails to adequately distinguish between "self" and "nonself." I called a rheumatologist and got an appointment three weeks later. This rheumatologist reviewed my blood work results and did an exam. The exam consisted of a lot of poking. Does this hurt? Yes, bitch it hurts! I am sorry. You have a lot more physical ailments along with secondary autoimmune diseases. I mainly treat patients with Rheumatoid Arthritis. I don't know enough to properly treat you. After that visit, I realized I did know enough about doctor specialization. Rheumatologists are not all proficiently knowledgeable of every chronic illness. I respected the doctor that knew his comfort level. My previous general doctor would not even consider the possibility that I had Lupus. She tested me for Lyme disease. She insisted that that the ER Doctor and WebMD was not a valid form of information. As if! -Alicia Silverstone, Clueless
After extensive research, I made an appointment at The Hospital of Special Surgeries with
Dr. Doruk Erkan, Associate Attending Rheumatologist and Clinical Researcher in New York, NY. It took two months before I could get an appointment. Initially, the appointment was six months later. I am very persistent, so everyday 9am and 3pm, I would call and inquire about any last minute cancellations. The flare-ups were awful. I needed medication. I needed guidance. I needed help.
My sister in NY introduced me to Dr. Daniel J. Wallace, he is one of the world's leading authorities on this disorder. She bought me The Lupus Book, The Sjogren's Book and Making Sense of Fibromyalgia all written by Dr. Wallace. While I awaited my appointments, I devoured these books. They became my daily inspiration, my bible. I needed preparation. I needed knowledge. I needed answers. Lupies, being your own advocate is crucial. No two Lupus patient have the same symptoms or take the same medications. Unfortunately, the Cruel Mystery is incurable at this time but medications, therapies and self-care can allow my fellow Lupies to live a beautiful life...one day at a time.