Patient & Caregiver Stories Main Menu

(English) by First Name: A B C D E F G H I J K L M N O P Q R S T U V-Z

By Language: French   German   Greek   Italian   Polish   Romanian   Russian   Spanish   Turkish

By Illness: Main List, Linear/Morphea, Systemic Scleroderma, By Symptoms

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

New email address needed 08-08-06 SLE
Old Email Prefix: theresacollins
Story posted 9-19-02

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
Acid Reflux

ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill KnaggsSherrill 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

Photo of JudithJudith 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!

Go to Thomas: Brother of Morphea Patient
Most Recent Donors

Winn Schillberg
Reading Voices of Scleroderma Books: Diana Kramer.
Sharing Scleroderma Awareness Bracelets: Deb Martin, Brenda Miller, Vickie Risner.
Thanks to UNITED WAY donors of Central New Mexico and Snohomish County!

In Loving Memory

Patricia Ann Black: Marilyn Currier, Shelley Ensz, Richard Howitt, Gerald and Pat Ivanejko, Juno Beach Condo Association, Keith and Rosalyn Miller, and Elaine Wible.
Gayle Hedlin: Daniel and Joann Pepper and Nancy Smithberg.
Janet Paulmenn: Anonymous, Mary Jo Austin, Shelley Blaser, Susan Book, Dennis and Pat Clayton, Grace Cunha, Cindy Dorio, Michael and Patricia Donahue, Shelley Ensz, Nancy Falkenhagen, Jo Frowde, Alice Gigl, Margaret Hollywood, Karen Khalaf and Family, Susan Kvarantan, Bradley Lawrence, Jillyan Little, Donna Madge, Michele Maxson, Barry and Judith McCabe, John Moffett, My Tribute Foundation, Joan-Marie Permison, John Roberts, Margaret Roof, Maryellen Ryan, Mayalin and Kiralee Murphy, Nancy Settle-Murphy, and Bruce and Elizabeth Winter.


SCLERO.ORG is the world leader for trustworthy research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension. We are a service of the nonprofit International Scleroderma Network (ISN), which is a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team, or Volunteer. Donations may also be mailed to:

International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702 USA

Email [email protected] to request our Welcome email, or to report bad links or to update this page content.

TOLL FREE HOTLINE 800-564-7099
Free to U.S. and Canadian Callers. Ask for our Free Info Packet by mail or email!
Scleroderma, Pulmonary Arterial Hypertension, and related illnesses.
Privacy Policy.

The most important thing in the world to know about scleroderma is!
Donate Now
Copyright 1998-2016, International Scleroderma Network. AKA Scleroderma from A to Z and SCLERO.ORG. All Rights Reserved.