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Janet: Mixed Connective Tissue Disease

I feel like I am slowly dying, my whole body hurts.

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.

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ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.

ISN Story Editor: Judith Thompson Devlin

Judith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

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.