Scleroderma is a chronic autoimmune disease that is characterized by the thickening (sclera) of the skin (derma). According to the Scleroderma Foundation, there are approximately 300,000 cases of scleroderma estimated in the United States, 80% of which are female. It is an unfamiliar disease that typically strikes between the ages of 25 and 55 and is different for every patient. Misdiagnosis is therefore a common occurrence. A cure does not exist yet.Some people are affected only on the outside, some just on the inside and others in both ways,” the disease can mean the hardening of the tissue of internal organs.. “Scleroderma triggers people differently. It’s a deadly disease – it has and still is killing people. I really hope that more research will be done and provide answers and solutions to those who struggle with it.” - See more at: http://www.thecorsaironline.com/lifestyle/2015/03/18/the-skin-i-live-in/#.dpuf
Just another night, hard to sleep straight through, I'm like a newborn up constantly, being bothersom, not really needing anything just NOT sleeping. I go to sleep fast and easy but I'm right ready in a few hours.
This last week we had terrible doctor appointments. When I say that it's not bad doctors (anymore) it's bad news. Where do I start, rhumalogist diagnosed 3 viruses just being out in public with cloud of people and my weakend immune system(that's the price I pay), and the trip to Fargo was a tear jerker. My specialist there(who is top notch) is sending me to Mayo, but also at the same time researching for the highest in knowledge in treating Scleroderma specialist across the country because MN doesn't have it! All tests have been ran, all procedures done, and a therapies and drugs tried. My struggle remains as yet AGAIN!!! I'm placed on hold to now search the country for anyone that works with/studies/researches this one and only rare disease, that's untreatable and there is no cure for. Again I must wait. My Esophagus is getting so bad even drinking from a star is bothersom. I'm completely off solids. I'm loosing more and more control over bladder and bowel as now there's at least daily accidents due to Scleroderma. You think I would be loosing weight again but it's opposite I'm gaining and there's nothing I can do, when things harden they become heavier) the super Strom meds the Endroconologist gave me to shrink the tumors in my brain on the pituitary glad haven't worked! My labs were still elevated and I'm still lactating! I go tomorrow to see if there's different drugs or if surgery is next option cause I don't have any babies in the house needing breast milk and it's quite the annoyance!
My brain is empty right now, I will continue when I feel literat again!