Seriously, it's fine being in Limbo Land when I feel "fine". My fine used to be great, but now my "fine" is defined by whole new set of set of rules. If I am not too tired to get out of bed, if my head isnt aching, if my hips arnt hurting, if I am not nauseated, bla, bla, bla, I must be doing fine. But I am the woman I used to be!
But when I feel like complete crap, I wish that someone in my life (list of doctors) would take some time to look at my big picture and say yes, you have Lupus or some other defined autoimmune disease, and treat it with kindness and respect. As it is, I feel like a ball in one of Venus William's game of tennis, going back and forth, never getting enough time to explaine myself. Obviously I dont WANT an illness, but my labs are crystal clear and my body is clearly in sync with some type of autoimmune thing...my guess is Lupus...or Scleroderma...or both. With no diagnosis at the moment, my treatment is yoga and tylenol....NOT working.
Today is one of those days. Truthfully this week has been one of those weeks. I do have a pending doctors apointment, but my hope for any real help is nill. I have been playing autoimmune "ring-around-the-rosy" since 2005. I'm so sick of it, yet doctors continue to insist that I follow up with the rheumatologist. So off to a new one I go...next month. It almost hurts to have hope for a caring doctor.
I have been diagnosed with three different but simalar autoimmune diseases and treated with medications twice since 2005 and twice that diagnosis was retracted by another doctor who didnt agree. The first time it was Lupus. He laughed after looking at me and reading my sad stack of a chart and said you clearly have Lupus. I was given Plaquanil and steroids. The next said that Lupus was a diagnosis that any dumb doctor would give me, but thats not what I have, this doctor said I had Scleroderma. I was given Methotrexate. Nope said the next doctor, you look fine now and I think you have some sort of mixed connective dissorder and fibromyalgia.
Well thanks! So today I feel like crap, and thats my story. Am I the only one???