Hello, my name is Jacquie. I have been active, healthy, and as un-hypocondriatic as they come all my life. I am fifty-six years old and I was diagnosed with systemic scleroderma in November of 2003, right when menopause hit.
A few years before that, I started getting dramatic colors of red, white and blue in my fingers (Raynaud's). My fingers would freeze and I could never stay warm enough. I actually looked forward to menopause because hot flashes sounded good to me. However, when the hot flashes did start it was as dramatic as the Raynaud's was. I would never get a hot flash when I needed one. Either I was way too hot or way too cold.
Then, around the summer of 2002, I noticed that I could no longer turn on the hose faucet without pain in the skin of my hands. It felt like I was the 'princess and the pea'. I could not stand the littlest pressure on most of my body. It felt like I was always ready to bruise. I noticed that my fingers were swelling and I thought it was some sort of edema.
Around that same time I got bursitis in my left shoulder that lasted for three years, went away, and then it went into the other shoulder. My esophagus was next with acid reflux and trouble swallowing. Then telangiectasia showed up with red spots on my nose. Then the Raynaud's went into parts of my face. My mouth was getting smaller (microstomia), and my skin was tightening around my legs, arms, face and torso. Side bends now felt like they would split my skin. Then I got zapped of all energy. I felt like I was made of lead. I would crash if I went on a hike and had to lie down in the middle of the trail until someone gave me an energy bar.
I have had tests on my lungs and heart. So far so good. I take my blood pressure regularly and it is always good. My energy has returned since taking beginning some treatments.
My hot flashes are almost gone now. They were a big disappointment, anyway. I can never stay warm enough. I live in Washington State where it is heaven in the summer but the winters are bone chilling and damp.
My attitude has always been upbeat. I am optimistic and I even forget about having scleroderma most of the time. Maybe I am one of the lucky ones who has a mild case. Maybe I am in denial. Maybe I can be of hope to someone who may be scared right now. It does not have to be bad. I can live with this. And I can heal from it. I just know. Thank you all for reading my story. I look forward to hearing from you.
Email: [email protected]
Story posted 08-25-04 SLE
ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
Microstomia (Small Mouth)
Scleroderma Clinical Trials
Ineffective Treatments: Minocycline
Trouble Swallowing (dysphagia)
Brochure: What in the world is Scleroderma? (PDF, free)
Reading Voices of Scleroderma Books: Diana Kramer.
Sharing Scleroderma Awareness Bracelets: Deb Martin, Brenda Miller, Vickie Risner.
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