Hello to all. I am a Registered Nurse from South Carolina. I am 47 years old and was just recently diagnosed with CREST. It took over a year to get the final diagnosis. I was told for 3 years I had lupus, I had my doubts and kept looking for answers. I am now in stage III kidney failure and no one is really sure why. I go to a large acclaimed hospital for care that has a scleroderma center of excellence.
I feel very good about my care. What I don't feel good about is how I feel right now. I have significant joint pain daily with horribly swollen fingers and ankles. The worst part for me other than the pain and fatigue is the swallowing issues. I just had a swallowing test a few weeks ago and was told I have classic scleroderma esophagus. I choke on heavy foods like, chicken, beef, vegetables and anything bulky. I am overweight and this is so frustrating. The only things I can eat without vomiting or pain is chips, candy, popcorn and ice-cream all of which I do not need.
This is not a disease that I ever thought I would be battling. I have a 24 year old son with autism and muscular dystrophy, so that is hard enough, but to care for him feeling like this - No fun.