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Terry: CREST

When things can't get any worse, a sense of humor is a big plus.

TerryA doctor who saw me in a Workers' Compensation case told me I have CREST. He spent three hours with me and was also allowed to visit my workplace. He said that the chemicals I was exposed to caused my disease, as well as the disease of several other coworkers.

I came to know this after nineteen years of working at Texas Instruments in Sherman, Texas. There have been a few of us who have been helped, but others have not been helped. For most of us, it has taken nearly fifteen years to notice something was wrong. Others have gone after the chemical company and settled out of court.

Many others who really need the financial help have not had any assistance. Although Workers' Compensation has been helpful, we spend most of our time fighting them to pay the medical bills.

I have three grown children, three grandchildren, and another grandchild on the way. I am in my early fifties and it makes me nuts that I cannot work. I do a lot of ministry work to help stay busy and it helps with my pain management.

I have severe neuropathy. I have learned to live with it, though it has its moments. I seem to be doing well with it. Many doctors are totally amazed at how well I am doing.

I am a very positive person now, but I was not when I first got sick. It took a long time to be diagnosed, so I tell everyone to be patient. Sometimes we fall into what is termed undifferentiated connective tissue disease (UCTD). There are Internet resources with great information, and perhaps a lot of this information can be shared with your doctors as well.

I am on oxygen most of the time. I used to be unable to walk, but I can now. I have some internal organ problems, but am managing. Breathing can be a chore at times, but then it is okay at other times. I have a cough that I have not been able to get rid of since this past fall. I have been on steroids, and I have arthritis in my spine and most of my larger joints. I have been getting injections to help with pain. I hate the weather changes as they affect me a lot, especially in the fall and spring.

I have had my fair share of depression, and most likely still have it from time to time. There are days I cannot move about and just stay in bed for the day. I have found swimming to be of great help for my fibromyalgia. It really helps when the water is warm, too.

What I can say is this: with a positive mind and good thoughts, I am able to get through the days. When things cannot get any worse, a sense of humor is a big plus. Reading or watching things with humor and laughter helps more than I can ever say. Having a support team available is a great plus. Sharing helps with the anxiety or fears that we normally have. I encourage everyone to find something they can do and stay with it. Look for the joy of living in the simple things of life, such as friendships. I love to give encouragement because that is why we are here, to help everyone along this path of illness and life itself.

Thank you for allowing me to share my life with you.

~ Update 3-28-02 ~

I have started a new MSN Community called "Prayers in Waiting", and invite people to post prayer requests and share inspirational support with me.

~ Update 7-23-02 ~

We have just launched our website for my Prayer Bears Ministry where we craft bears and give them free to those in need of prayer. (Prayer Bears has since been discontinued.)

To Contact the Author

New email address needed 08-06-09 SLE
Old Email Prefix: godsbears
Story posted 3-19-02
Story updated 3-28-02
Story updated 7-23-02
Story edited VH1: JTD 9-4-03
Email note posted 01-24-05 SLE

Story Editor V1:
Judith Devlin

Terry also served as a wonderful Support Specialist for the ISN Sclero MSN Community (which is now ISN Sclero Forums) in 2002-2003.
Difficult Diagnosis
Undifferentiated Connective Tissue Disease (UCTD)
Voices of Scleroderma Volume 1

This Story is Featured in Voices of Scleroderma Volume 1

Voices of Scleroderma Volume 1 The story on this page is featured in the top-notch Voices of Scleroderma Volume 1 which features articles by top scleroderma experts, including Dr. Joseph Korn, as well as 100 true patient and caregiver stories from this website! The book delivers excellent information and support for scleroderma patients and caregivers. It's a great way to inform family and friends about scleroderma, too!

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 Terry E. (Mojoy the Clown): Morphea Profunda Linear Scleroderma

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