In the mid 1990's I got a blood infection which landed me in the hospital and for a week. My hands were in the worst pain ever; just the air made them burn like fire. Since then I have had Raynaud's, but wasn't diagnosed until sometime in 2007 or 2008.
I also turned fifty years old and became so constipated that still to this day I rely on probiotics and laxatives to keep me going.
We sold our motel business because it hurt me so bad to work each and every day. Then I worked as my husband's assistant as a handyman/contractor. We got pretty good at laying floors and painting, but it was still difficult work for me and eventually I developed an open wound on one of my fingers. I kept going to Urgent Care because I thought I had a sliver that was imbedded and needed to come. I kept soaking the hand in warm water and dish soap. This felt good but I did not heal for over two years, and eventually other fingers began to do the same.
I had a colonoscopy because I have always had diverticulitis, and the surgeon felt it necessary to run some blood tests even though I told him I did not have the money to pay for it, but he insisted and at first the diagnosis was lupus. He said, don't go home and look it up on the internet, because you'll want to commit suicide. Well, that's not me, so I looked it up and moved on.
I kept working as best I could until finally my fingers got so bad I went to a rheumatologist. However, he was leaving the area and told me I really needed to be seen and tests needed to be run, so I finally ended up going to another one. She ran tests which showed positive for scleroderma. She pointed out the thickening and hardening of the skin on my hands and she pointed out that the red marks on my face and body were also a part of this. She also had me see a pulmonologist who was really good and really listened to me.
The final outcome is that I have systemic scleroderma. It is in my lungs, and I also have a small nodule. My feet and hands are really affected by the Raynaud's. My stomach boils; just adding any liquid makes me nauseated, and I have regular flare ups of the diverticulitis. My acid reflux is partially under control thanks to the medicine prescribed.
I now seem to catch all colds and other contagious things. I never know where I'm going to hurt next. On a daily basis, my hands are numb and a pain radiates from my wrists towards the fingers and up the arms. My knees and hips don't hold me and I can't sit or stand for long periods of time because I stiffen up and start out walking like my eighty-year-old mother.
I have been bathing my body in cocoa butter lotion since 2005 because my skin was feeling tight and it made my face feel better. My skin is really starting to shine now, and it also itches constantly.
The rheumatologists I went to basically said I am fine and should be working. I'd like nothing better, but with a high school education, my limited skills, and the current number of unemployed people makes that nearly impossible.
Last winter, I was so sick from October through mid January, I would not have been able to work. I'm hoping to move away from the wet windy coast to a dry and warmer area.
This has all been quite an adjustment for my husband, who is really an active person. Actually, we both were. And this disease didn't quite figure into our life at this age. He does most of the cooking and of course all the heavy cleaning and lifting. He's really considerate of the temperature and my needs, so I'm very lucky there. We've been together since 1975 and we've always done everything together — working, vacations, everything.
Story posted 07-05-12 SLE
Story Artist: Janet Paulmenn
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ISN Artist: Janet Paulmenn
Janet Paulmenn, ISN Artist, created the original artwork or digital photo to illustrate the story on this page. Janet received a BFA and an MAT in Art and was an Elementary Art Specialist for 27 years. She also has diffuse scleroderma, and is a kidney transplant recipient.
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