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John Harley, MD, PhDJennifer Anolik, MD, PhDAnne Davidson, MD

Coping with Lupus
Tuesday, March 17, 2009
By: Linda Bell

Coping with Lupus
Coping with Lupus

Living Life

Living Life Coping with Lupus
By Linda Bell

When I first was diagnosed, no one even knew what Lupus meant and would say to me, "You have what?" I first started off with things like a rash over my face when I was in a restaurant sitting next to the window on a sunny day and my husband looked at me and said, "Honey you have a rash going across your cheeks and nose." I was then only 27 several years before I was diagnosed at 29.

I would always have numb fingers and toes to the point of being painful when I went into air-conditioned places. I could not feel my toes or fingers at times which was very scary to me. We spent many years trying to get someone to listen and get diagnosed. They first thought I had chronic fatigue syndrome. I would always tan outside in my late 20's and I would come back from being outside and feel chilled and have a fever and be listless. That is how it began. Then I finally was diagnosed and I had to see a Rheumatologist to undergo tests.

I remember the doctor bringing my husband and me into his office and sitting us down. He told us that I had a disease called Lupus. Finally they had a name for it. Everyone for years just made fun of me and never believed me.

I do resent it to this day. I spent years trying to explain to people what I had and no one knew what I was talking about. I was the one with this awful disease and I had to convince others I was sick because I looked so well on the outside. I was so tired of hearing everyone say, "But you look so good." Even my parents didn't want to believe I had such a terrible disease and would say I was fine and didn't have anything wrong with me.

It was such a relief, at least this was a real disease and I was not crazy. He told my husband and me that it was incurable and that I could live as many as 10 years or as few as 5 if I were lucky. His words just struck me in the pit of my stomach. I could die from this disease. He did not tell us tactfully. I have had many problems over the last 20 years with Lung involvement, chest pains, digestive problems, arthritis, as well as vision problems, swelling, sore throats, and migraines.

I have been very blessed to have support from many friends and family who are praying for me on a daily basis. The Lord has blessed me by getting me through all the terrible things that my body has went through over the years, and he keeps making me stronger with each new hurdle. I have been in a mild remission now for three years and I will remain strong and keep fighting this disease. The Lord will give me strength and guide me through any rough times that come my way.

 
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