My goal is to shed a light on the debilitating disease, Lupus, by sharing information about what I've found that works, or doesn't work, for me. Ten years ago, I began the daily struggle with lupus, alongside my supportive husband, George, our children, Sarah and Hannah, and with George's sister, Dr. Patricia Eshaghian, a physician at UCLA Medical Center specializing in Critical Care and Pulmonology, shepherding my direction. At that time, very little information existed about lupus in the bookstores or online, and support groups in Los Angeles were limited.
For ten years, I've employed my research and analytical skills, using resources at my disposal, digging for clues on how to manage my health. From the latest medications to a cabbage soup diet, my trial and error method has turned up some good results - too good not to share.
Ten years ago, I was in bed for more than two years, unable to walk from joint pain, fatigue and inflammation all over my body. At my initial diagnosis, I presented with a hemoglobin of 5 (normal range 11-14) pericarditis (fluid around the heart) low platelets, debilitating joint pain, significant hair and weight loss, migraines, skin rashes and B-12 deficient. Fibromyalgia and daily migraine headaches settled in within a year, or two, along with arthritis, Raynaud's, debilitating muscle spasms, lividio reticularis, asthma and skin issues, including skin cancers.
During the first few years, I progressed slowly from our bed to the couch, to a wheelchair, to a scooter, to a cane... until today, when I returned from a three week trip to Europe with my husband to visit our daughters studying abroad for the semester. It's the first big trip since my diagnosis, and I'm VERY happy to report that it was awesome! Never did I imagine, ten years ago, that I would be able to run for a train, much less hop on and off with a suitcase.
Today, my health is far from perfect, but, my quality of life is vastly improved by what I've found that works for me. I sincerely hope that something I've stumbled across will help you, too.
With love and light,
Jana
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