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Lynn S: Diffuse Scleroderma and Pulmonary Hypertension

"You are too young for this!"

I will be twenty-eight in a few weeks. My story started about seven years ago. I had a spot on my arm that was diagnosed as morphea at that time.

A few years ago, I started having problems with my left arm and shoulder hurting. After about five tests the doctors decided it must be tendonitis. Now my neck hurts all the time. I also have tendonitis in my left achilles tendon.

I have had reflux for years, but it started feeling like there was something stuck in my throat all the time. The muscles in my esophagus will not relax, so I take six muscle relaxers a day for that and other muscle problems, plus two nexium a day for the reflux. I also have Raynaud's, sero-negative arthritis and myositis.

I found out a few weeks ago that I also have pulmonary hypertension (PH). They say it is mild, but I am being sent to a specialist. I am not taking anything for that right now. It took a lot of tests before they figured that out. I think I was having a new test every week. I have a lot of pain and am tired a lot. I have trouble walking up many steps and hills are a problem.

I have only been married for about two years and would like to have a child. It was not easy getting to the root of my problems. Most of the doctors I had seen thought I was full of it. No one believed me; I guess because I look healthy. I would always hear, 'You are too young for this!' It is hard for people to understand.

I give credit to my pulmonary doctor for my diagnosis, as he kept looking into my breathing problem. It may have taken six tests, but we finally got to the bottom of it.

I do not know what I will feel like in five or ten years, but for now I get up and go to work everyday. My family has been really good. My mother always believed me and my sister, who is a nurse, did too. My husband is understanding also. I do not think he realizes how much pain I am in all the time, but over all, he is understanding. When I go to my appointments with the pulmonary specialist I will find out about my chances of having a baby. I hope it will be okay.

I am glad there are other people out there that understand and that I can relate to. I would love to hear from anyone.

~ Update ~ 11-8-02 ~

I went to the doctor about a month ago and they do not recommend I ever have children, because of the PH. I have been very upset ever since. It is up to me but they do not want me to. I do not know what to think. They started me on a calcium channel blocker, but I could not take the first one they gave me. I hope I have better luck on the next one. I would love to hear from anyone who has PH who has tried successfully or unsuccessfully to have a baby.

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ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill 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

Judith 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!

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