I am a new member. I have been in denial for about 3 months and I finally went to my family practitioner who stated that my blood test showed positive signs of Lupus. I admittedly did not tell her the complete truth but new immediately knew what she was looking for. Of Course, she asked have you ever had a rash in the shape of a butterfly? I responded, what are you looking for, Lupus. She was shocked with my response and I told her that I was not a dummy and new how to research.
Here is the truth. I am a boater, power, sailing, anything to do with the water. I am always careful to cover up w/masses of heavy duty sunscreen. Then, at the end of the summer I developed a rash on my face, not like a butterfly, but a bit like acne. As a woman in her mid-40's and quite vain, sad to admit the truth, I always loved the fact that my skin was in such good condition that I did not need to wear make-up. I was the envy of my gal pals. The last time I went sailing I wore sunscreen, make-up and a hat. I got this horrific rash. It has been since September and this rash took complete control of my face. I went to a dermatologist who told me I had adult acne and gave me topic medicine that made it worse. Actually she was a nurse practitioner. Anyway, she saw me 3 times and then gave up because she then failed to return my calls.
Next, I called my family physician. I knew this was not pimples. It hurt to put my face on a pillow and it was as if the rash was on top of another rash. My glands were swollen and every little cut on my body became infected. Hence, my Internet investigation. Oh yeah, My body felt like it had the flu. Any old injury I ever had hurt like it just happened. I was bed bound for 5 days. I guess it does not take a doctor or a rocket scientist to figure out I did not have adult acne.
So here it is. My blood test positive for Lupus, I have a rash, real bad, not butterfly, joint pain, feels like sciatica, the rest of the body aches have fled, thank god. I have been under a tremendous stress and have been sleeping like Rip Van Winkle. Ordinarily, I can not sleep.
I do not want to "own" this disease so I have been resting a lot, and meditating. To my delight, the rash is lifting and I am starting to feel human again. I am going slow, especially for my type "A" personality. I am use to walking at least 20 miles a week and doing yoga. I have stopped everything. Mostly because I am in pain. Oh yeah, my blood test shows something wrong with my liver function.
I am being sent to one of the top immunologist/hematologist on the east coast. I was a regular of his 15 years ago for an autoimmune problem that was never named. Basically, 15 years ago my white count was revved, as he put it and was making me tired and sick. He treated me for 5 years w/B12, and re-inoculated me w/all my old childhood inoculations.
I am sitting here constantly shifting because of the sciatic pain. What do you all think?....looks like a duck...quacks like a duck?
I would appreciate any input you might have to offer. I do not have an appointment yet, with the blood/immune doc. yet. I did cry for 2 days but I am over it. I want to move on & do what I have to do.