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.'
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
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.
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: