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Pam M: Diffuse Scleroderma, CREST and Raynaud's
"I'm still here, just not kicking."

Butterfly Flowers for Pam by ISN Artist Ione Bridgman I am forty-nine years old and have diffuse scleroderma with overlapping CREST and Raynaud's. I was forty-four years old when I was told those strange and unheard of words. My husband, of only two months, sat there looking at the doctor in complete bewilderment and all I could think was this sounds pretty bad!

The doctor, I will never forget, was ecstatic and ran out of the room to get some of his colleagues to come look at his rare find, especially since no one had ever seen it, of course. He tried explaining it to us, but we both were in too much shock. I remember thinking how I had finally met a wonderful, caring man and how unfair this was to him! He later told me he blamed himself. Does that sound familiar?

After all, I had so much to be so happy about. I had a new grand baby, four great kids and a good man, who I knew loved me and I him. So why was I sick?

I went to a rheumatologist and after she had almost killed me with all the tests and drugs for a year, she threw her hands up and said there was nothing else she could do. I was getting worse and she had tried everything she knew of on me. She suggested that I go to Boston. Well, she might as well have said Japan since I live in Texas!

I's been five years since then and after finding a few good doctors and so many medications, I'm still here, just not kicking!

I have another grand baby and one due in April and I still have a wonderful, caring husband. God knew what he was doing when we found each other.

I have tackled this disease with jokes and laughter. It seems to help, especially with my husband and family, as I have to be strong for them. When I graduated from high school I was named 'Miss Fun' and I was known as the Carol Burnett.

I wonder sometimes if God gave me this disease because He knew I could handle it with my personality. Or did He think I would not laugh anymore? Whatever.

Through all of this and all the trials and tribulations, I know that there is a reason why you and I were picked to have this disease. I do not know about you, but when I get to heaven, I think that will be my first question. I am sure there will be a lot of us in that line!

Please e-mail anytime. Always glad to hear from fellow 'scleros.'

To Contact the Author
Pam M.
New email address needed 07-18-06 SLE
Old Email Prefix: HENDERSONRED
Story edited 10-4-02 JTD
Story posted 10-9-02 SLE
Email address updated 12-26-02 SLE

Story Artist: Ione Bridgman
LINKS
CREST
Diffuse Scleroderma
Raynaud's
Scleroderma Experts
ISN Artist: Ione Bridgman
Ione Bridgman 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 .
ISN Story Editor: Judith Thompson Devlin
Judith Rose ThompsonJudith 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!
New Personal Stories
Maria T: Daughter of Deceased Scleroderma Patient (Italy) He, upon looking at my mom's face and hands diagnosed her with sclerodermia, in fact he took care of her until the end...
(Italiano) Maria T: Figlia di una Paziente Defunta di Sclerodemia (Italia) Lui, come vide a mia madre disse "tu hai la sclerodermia", guardandole le mani e la faccia...
(Update) Dee B: Limited Scleroderma/CREST Syndrome (South Africa) There is so much I want to add to my original letter after reading more of other peoples stories. I am certainly not getting better but wish I was...
Tessa: Morphea The nurse just told me that I have morphea and knew nothing about it and she told me to look online for information...
More New Stories: August-November 2009
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