Hi, my name is Karen, also known as Pooh Bear, and I have diffuse scleroderma, fibromyalgia and Raynaud's. My story began a number of years ago. I was having some weird feelings on my left side. My face and arm would sort of feel like it was sleeping. My doctor ordered a CT scan of the brain, thinking possible stroke because I also have high blood pressure. The CT was normal and the doctor thought I may have had a transient ischemic attack (TIA) or mini stroke.
As time went on this feeling would come on more often. Then I started having trouble walking. I was sent to University of Michigan Medical Center where I was told I had arthritis in my back and a pinched nerve in my shoulder. This was in January of 2003. I had surgery on my shoulder and the tingling feeling seem to disappear for awhile.
But then other symptoms started to appear. My fingers would get ice cold and turn pure white, almost transparent. My muscles seemed to ache all over. I felt like I had been hit by a truck. I would have good days and bad. I went to see a rheumatologist and she diagnosed me with fibromyalgia and Raynaud's. She said there was nothing that could be done for the fibromyalgia except I needed to stay active and exercise to keep from becoming stiff.
As time went on, things sort of stayed the same for a few months. Then in October, my skin became real tight. I felt as though I was sunburned from head to toe. It hurt to be touched anywhere. If I stretched out my arm it felt as though my skin was going to rip.
I went back to my rheumatologist, and she diagnosed me with diffuse scleroderma. My daughter was with me at that visit. I was so glad she was there, because I sort of went into shock when the doctor said she was going to start me on chemotherapy treatments. When she explained what the disease could do and that there was no cure, I broke down. I thought I had been given a life sentence with no parole. She explained to me that the disease was a progressive one and that different people had different experiences.
I got myself together, and with my daughter got on the Internet and enlightened me about the disease and its outlook for life expectancy. I made up my mind that I was going to beat this monster, no matter what. I know the road ahead is probably going to be tough, but so am I.
I had no bad side effects from the chemotherapy, other than being tired all the time. I was taking the treatments orally, everyday. I never lost my hair or got sick.
In February, I went in for my monthly checkup and blood work. The doctor called me the next day and said my liver count was up. I was to take only one pill a day of the chemotherapy instead of two, and avoid alcohol and over-the-counter pain medications. I was to do this for two weeks and then have the blood work done again.
I did as I was told, and then had my blood drawn again. The count was even higher. I was taken off the chemotherapy entirely for two more weeks and had blood work drawn again. The results were better. At this time I am not taking the chemotherapy at all for another two weeks and I will have my blood drawn again on April 30th. We will see what happens. The doctor says I may have to have the chemotherapy given intravenously rather than orally. I guess too much chemotherapy is just as bad as none at all.
At this time, my fingers are starting to curl inward, so the doctor had splints made for both hands that I wear to bed at night to try and straighten them and to keep them from getting any worse.
My fingertips are very sensitive. I have not had any ulcers yet, thank goodness. I wear gloves whenever I do dishes, reach into the freezer, go outside, or do anything that could harm them. My Raynaud's is really bad.
My legs are getting weaker and quite painful. Like before, I have good days and bad. But even on the bad days I have my family. I have three fantastic children, ages sixteen, twenty-two, and twenty-four, and the best husband a woman could ask for. He is the greatest. So through it all, with God on my side and a terrific family, I am going to be just fine.
God bless everyone who has to deal with this monster, and may God bless you and keep you well. My thoughts and prayers are with you all. Together we will make it through it all.
|Karen M.R. (Pooh Bear)
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Story posted 03-25-04 SLE
Email note posted 01-24-05 SLE
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Sclerodactyly (fingers curling)
SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.