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Joy W: CREST Scleroderma

It is like having a time bomb waiting to go off.

Roses for Joy by Sherrill Knaggs, ISN Artist I had heard that when you get in your forties, they are the best years of your life. Well, on July 3, 2002, two months after my fortieth birthday, I was diagnosed with CREST scleroderma with Raynaud's. What a fun day!

I have been married to a wonderful man for seventeen years and we have two precious daughters ages fifteen and thirteen, those wonderful teenage years, but actually they are pretty good kids. I also have been a hairstylist for twenty-two years, the last two as my own boss.

I have had Raynaud's since I was about twenty-three, with no other problems with my hands. As time went by, my family doctor noticed my hands were starting to swell. About twelve years ago he sent me to a rheumatologist and he mumbled something about possibly having some sort of connective tissue disease. He did not seem too worried.

So every year that I went to my doctor for my physical he would keep checking on my hands and every year he noticed that the Raynaud's was worse. About four or five years ago he scheduled some blood work for an antinuclear antibodies (ANA) test. It came back saying that a connective tissue disease was active.

Every year my hands would look a little worse, and then these red spots started to appear on my face. I thought they were from getting older. The doctor always asked me if I had difficulty swallowing. "No," I said, " I just had a lot of heartburn and I ate a lot of Tums."

Last May he decided that I needed to see a specialist again. Thank goodness it was not the same one!

My first appointment with the rheumatologist was a long one, three hours long. They examined me from head to toe. Just from looking at me and my symptoms they knew what I had. First thing they did was put me on a calcium channel blocker for the Raynaud's. I now take a proton pump inhibitor (Nexium) for the heartburn and an anti platelet agent (Dipyridamole) also for the Raynaud's. I always have blood and urine tests and so far so good. I have had a pulmonary function test where my numbers were a little low, and an echocardiogram that was good.

Living is day by day. I try not to complain. My hands ache quite a bit. It is kind of scary not knowing when or what will turn up next. It is like having a time bomb waiting to go off. I tease my doctors by telling them that my bathroom is starting to look like a mini-pharmacy.

I just know that I have to let go and not try to control everything around me. I am learning and trying the hard way but I will get there. In the meantime, I do thank God for the good days!

To Contact the Author

Joy
Email: [email protected]
Story posted 4-9-03

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
LINKS
antinuclear antibodies (ANA
CREST
Heartburn
Pulmonary Function Test Raynaud's
Telangiectasia (red spots)
Rheumatologist
Scleroderma

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 Joyce R: Scleroderma En Coup de Sabre
 
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