by Gayle Davis
(Colorado)
I am being treated for a skin rash that is compromising my life. I have Lupus and the rash is a reaction to the sun and my body fighting itself. I also have great stress in my life with my father having a stroke 2 years ago and I am his POA and daughter that is here to take care of the thousand of things for him and my mom. I do have some help from one brother but two others and a sister are not involved directly. I also live with my three adult sons (all in one house). Everyone contributes but there is often tension and conflict.
This rash developed shortly after my Dad's stroke. It looked like a bad sunburn and then got worse with my skin spliting across my stomach. Very painful. It was in the shape of a swimsuit, but on my face and my arms and my upper back and front of my thighs. I never sit in the sun, I am not an outside person but I was told even the sun through the windows in my office or car can affect me.
The itch is beyound anything. I have used every over the counter product and presciption topical ointments. I have been on kidney transplant rejection drugs, leprocy drugs and malaria drugs with no improvement. I cannot take prednisone due to high sugar. The only relief I get is ice and I sleep on ice packs. I also work a full time job as an addiction counsellor case manager. This is very hard to deal with as I am involved with people that fear this is contagious.
I am seeing three doctors and have just started acupuncture. I am going broke with medical and medication expenses and still no real relief. I take oatmeal soothing baths that work for an hour or so. When water hits me, as in a shower, my skin turns purple and looks molted, I feel like I must be missing something because it just is not getting better. I have thought I might need another opinion, but the doctors appear to be doing everything. I have had 9 biopsies and no actual cause can be determined but Lupus and stress.
Help!!!!! I am feeling powerless to know what to do next.
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