Hi, my name is Betty. I have CREST scleroderma. It took two years for them to find out what I have. I went through two surgeries on my colon for nothing and I have gone downhill ever since.
My skin is not too bad. I have a little tightness on my fingers with the shiny stuff (sclerodactyly). My main problem is in my organs. The scleroderma has badly affected my stomach. The doctors say it does not work anymore. I have a feeding tube and a drainage tube. I got to where I am because I was throwing up everyday and I lost a lot of weight. My weight was two hundred and fourteen pounds before I became ill, which came on quickly, then I went down to one hundred and twenty-four pounds. That is when I got all the tubes. I can still eat but the food just sits in my stomach and then the bile overflows which was why I was throwing up all the time.
It has been a horrible experience for me and my family. I feel like just pulling the tubes out and forget it all. I cry all the time, stay depressed, and worry every minute of every day.
I would like to talk with someone that has the tubes also. Maybe that will help me.
Most days I get up sick and for the past year I have to sleep sitting straight up in a chair. I cannot lay down flat and this is really getting to me. I do not know how much more I can take. Please write.
Betty is right; meeting others who are coping successfully with similar conditions can definitely do wonders for improving our outlook and help us adjust to the rigors of life with chronic or severe illness with increased aplomb.
However, it cannot serve as a replacement for professional care for depression, and many of us with chronic illness have found that we need to get our depression and/or anxiety under control before we can truly benefit from the type of support that online and community support groups can offer.
It is quite common for those of us with chronic or severe illness to need medication, supportive therapy and supplemental support groups such as our Sclero Forums, to maintain an even keel. For more information, see Emotional Adjustment and Scleroderma.
Email: [email protected]
Story posted 12-26-03
Webmaster's Note 12-26-03 SLE
Story Artist: Ione Bridgman
Story Editor: Judith Devlin
Dysphagia: Personal Stories
Emotional Adjustment and Scleroderma
ISN Artist Ione Bridgman created original artwork to illustrate this page. She is 90 years old, and lives in New Zealand. Her lovely paintings illustrate many of our pages and the covers of our Voices of Scleroderma Book Series.
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