My way of managing Lupus symptoms is what many would call “alternative” or “holistic”, but it is not conventional. Each person is unique–and Lupus patients are especially so. Unlike some diseases, there is no protocol that works for the majority of patients. I learned from my mother how to ask questions and make informed choices early on in life. I strive to thrive and live “with flair”; to do that I often have to fight for my rights as a patient to control, plan and choose my treatment. I have a team of specialists and doctors that work with me. As the patient I am the consumer; the product of their services directly impacts my life and ability to control my SLE, fibromyalgia and osteoarthritis, and antiphospholipid syndrome. As my own healthcare advocate, I realized that my body was going to help me discover what therapies would or would not work. After trying the conventional treatments and having mild to no success (in addition tp the side effects of these treatments) in collaboration with my healthcare team (led by me) we decided to first taper, and then eliminate the steroids. I had already made the informed decision and refused to take plaquenil (spell check) after reading about the long term side effects on eyes and vision. At that time (1986), the doctors weren’t thinking about my longevity or quality of life with Lupus, they simply wanted to control the presenting “issue” as fast as they could whip out their prescription pad. It wasn’t until two days before my 21st birthday when my rheumatologist told me I should go to Las Vegas and celebrate because I had beaten the odds. When I asked him to explain he said after my initial visit when I was first diagnosed that he would have given me a 50% chance of living more than five years. Instead, I celebrated by going on a trip to Israel, Paris and New York. Without realizing it, I was developing “Lupus Style” –a sense of celebration and deep gratitude at the incredible moments of life “with flair” while fighting and/or avoiding a “flare.” I have often been asked to share “what do I take or do to manage my Lupus?.” That’s when I decided to start this series of blog posts. I look forward to sharing what works for me and learning what works for you. Together, we can learn and improve the quality of our healthcare and our lives.
