I imagine that the next few blogs will be as difficult for you to read as it is for me to relive and for that I apologize. I have a knot in my stomach even as I type. I have often said, I would not have believed it had we not lived it.
The Monday following our weekend research session left me anxious to share our findings. I called the referred neurologist who just a week earlier expressed grave concerns about my declining health. I told her I thought I might have an answer, Lyme disease. I can still sense the awkward silence and hesitation that followed. Then, in less than five minutes, she stood by the decision of her colleagues that my disease was unexplained autoimmune, complicated by depression of a long illness, complicated by the care of a sick child. In her opinion, Lyme disease was highly unlikely. She then told me she was late to an appointment and hung up. I was left shaking.
Shortly after, I had a follow-up appointment with one of the top rheumatologists in the country and brought up the possibility of Lyme. She told me she had only seen two cases in her entire career. I had not been in a highly endemic area on the East coast. She did not feel it was a possibility, ending the discussion.
My family and friends had participated in local walks to raise awareness and research dollars for Lupus. My husband claimed I was northern Michigan's poster child for Lupus. Just before our research, I had been asked by the Alliance for Lupus Research to fly to Washington, D.C. to lobby for Lupus funding and had already agreed to go, though I was desperately ill. When I first agreed, my parents were terrified because of my illness. My Mom asked, “How can you go?”
I answered, “How can I not?”
Now I faced a huge moral dilemma. What if I didn’t have Lupus? What if it were indeed Lyme disease? How could I lobby as a victim of Lupus? I sought the counsel of my local rheumatologist who assured me I could go to D.C. knowing I had Lupus. In examining my hands, he declared, “Those are Lupus hands.”
I went to Washington, but came home with even more questions about my diagnosis. No one looked like me. At that time, I had shrunk to a size four. I was 5’ 9” with a difficult time walking and a terrible time eating. Those I met had sisters, mothers, aunts diagnosed with Lupus. There seemed a strong genetic component, yet I was the lone case in our extended family. Also, the trend was for one system to be primarily involved. I had multiple systems changing all the time. The Lupus patients talked about their flares. I was sick all the time. I had no break. There was one other woman at the conference who ate as I did. Fortunately, she was one of the organizers, who was as thrilled to meet me as I was to meet her. She made sure I had a refrigerator in my room and helped me find organic foods I could tolerate. She told me her doctor had said she had heightened sensitivities to additives and preservatives and another piece quietly slipped into place. Ironically, a sinus infection prompted another round of antibiotics and members of the conference commented at the end of the physically draining week that I looked better than when I had arrived. I felt a bit better, too. Interesting.
My husband has encouraged me to write a blog for years while I worked on a book about our experiences with Lyme disease. Inspired by "Julie and Julia", I have finally listened. Lyme is real is our family's story.