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Theresa C: CREST/Limited Scleroderma

I have been told to stop this kind of work, but it's all I know.

My name is Theresa. I am fifty years old and I was diagnosed with CREST in September of 1996. I had no idea what 'CREST' was until my doctor told me to go home and look it up on the Internet, which I did.

It started with my hands and feet being very sensitive to cold and heat. They turn white with cold and bright red with heat. It's very painful. I also noticed that I was having problems with shortness of breath and acid reflux. I was given inhalers, which I use twice a day, everyday, and medication for acid reflux. The skin around my fingers is often dry, cracks open and take awhile to heal. I also have painful stiff joints in my fingers, hips, arms and knees.

I come home from work and go straight to bed because of the pain. I am a cake decorator and I am really not ready to give up working even though my job causes a great deal of my pain due to the constant squeezing of icing bags and going in and out of the refrigerators. I have been told to stop this kind of work, but it's all I know. I did manage to stay at home for six weeks, but I could not handle thinking about my situation, so I went back to work.

The thing that keeps me going is not the medicine that does not work or being told by my doctors that there are no silver bullets for curing this illness, it's my faith in God. He rules my life and gives me the strength to get up on cold rainy days when I ache and am in pain. He pushes and pulls me through each and every day to encourage others who are worse off than me. On my down days of tears and pain, He gives me rest for my soul and spirit.

I do not know what my outlook is. I only know that I am constantly in pain. Being busy is the only way out. So I work and teach Bible study for children at my church.

Thank you for letting me share my story.

To Contact the Author

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.