Hi, my name is Janet, and I have just been diagnosed with Mixed Connective Tissue Disease (MCTD), lung fibrosis, Raynaud's and sicca (dryness) symptoms. I am going to get a biopsy of my salivary gland in my lower lip on May 18, 2006. I am kind of worried about it all do not do needles well. This test is supposed to confirm the diagnosis of Sjogren's.
I was also diagnosed with fibromyalgia about five years ago.
Since November 11, 2005, I have felt like I am slowly dying. My whole body hurts. My muscles in my legs, elbow and hip joints hurt all the time. Some of my medications help and some do not. I keep thinking this cannot last forever!
I have read that some people go into remission with their autoimmune diseases. I have a twin sister who has lupus, so we talk a lot about our aches and pains. I will be fifty-two next month but feel like I am seventy.
I have a really great husband of twenty-six years, but I cannot talk to him about my pain or I try not to. I know he gets tired of hearing about the new pain all the time!
I have read some of the stories on this site and they sound so familiar to mine! I need someone to really understand how I feel.
My husband is a pharmacist and he tries to keep up with any new medicine.
I am a retired nurse but have started a soap and candle business. We all need something to take our mind off of our disease.
I am afraid of getting addicted to pain medication, so I do not take them unless I really have to. If there is something I really want to do, I take a pain pill and just go! Maybe not the best idea but the pain medication does help me live my life. I am sure that if I did not take pain medication, I would just be in bed all day.
Thanks for listening, my family gets tired of hearing it. Good luck to all of you.
Email: Withheld by Request
Story edited 05-13-06 JTD
Story posted 06-16-06 SLE
ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Thompson Devlin
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.