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About wonderfuldaughters

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  1. Hello Sclero family and friends. My very first post is going to give some history. I feel nobody wants to hear my stories, so if I write it down maybe one day they will. We all know our lifespans are shortened and our diagnosis makes it challenging for us to make the best out of each day we are given. I am 35 years old. When I was 21 I was pregnant with my third daughter. I had to do routine blood work like other pregnant women. One day the dr's office called and told me I had a positive reading on a test for a virus. Hmmm, no I don't. I told them they should rerun it and no depend on a machine. They gave me a different answer saying it was inconclusive. Needless to say I did not have the virus, but I did have the beginning of my scleroderma life. After a few months I noticed my finger tips would become purple, white, or numb from the cold. I thought it was kinda neat so I didn't use any protection. During this time, I also had been dealing with a lot of reflux. When I talked with my primary doctor he felt these were just affects from pregnancy. After about a year or two I told the Dr I couldn't wait or deal with it any more. He looked at me and said, "I know what you have". He then referred me to a specialist about 2 hours away. I only seen the specialist a few times because after awhile I moved to Florida. The only thing she did was talk with me about my symptoms and take pictures of my hands. In Florida I only would see my primary doctor. I was not progressing with my scleroderma and I found my health as far as exercise and eating played a big role in how I felt. After about 5 years in Florida I noticed the red spots appearing. Thank goodness mankind invented makeup. I then moved to Georgia. After a couple years in Georgia I decided it was time to build up a history with specialists and all the fun labs and tests that go with it. I found a great Dr, and he is Russian if I remember right. Anyways, during this time I had my fifth child which was not an easy pregnancy. I felt as if my baby had no room in me. I was on bedrest from 19weeks to about 32 weeks. During the pregnancy I noticed symptoms of dysphagia. After the baby was born I had several different tests done. Immobility of esophagus and the sphincter is basically nonfunctioning as well. I do not want to do any esophagus stretching because it is expensive, not guaranteed to work, and I think it'll cause the reflux to be bad again. Oh and the red spots on my face have spread and are way worse. If people catch me without foundation on their comments are kinda like "are you ok" or "are you having an allergic reaction", or "is that poison ivy". My reply, "nope, it's just me". I'm always tired, I feel extremely swollen in the morning, my circulation stinks, I'm covered in giant red freckles, I have varicose veins that sometimes hurt, I have 2 mesh screens from tearing muscles, my lips are shrinking and my mouth I think, my teeth are getting bad, my memory is not good, I choke when I eat, and I have to fight my body's desire for depression. I work and am a single mom of 5 girls, well I guess you can say 4. My oldest moved out recently. Oh and about 6 weeks ago my dr started me on methotrexate and folic acid. The first month I had bizarre symptoms but it's ok now. It's still frustrating drinking tons of water that is required, but I'll make it.
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