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Lulu: Lupus and CREST Scleroderma

I thought that I was getting lazy.

I thought that I was getting lazy. It took all I could do to just get through the day. I have worked two and three jobs at a time all my life. I have been active at work and play. Then little by little I started having this horrible pain in my legs at first and then in my knees. They just seemed to quit when they wanted to, refusing to hold me up. I fell a few months ago and broke my foot. It was strange as I did not even hit that hard.

Next my fingers became stiff and swollen. I have always had a passion for art, painting and making things, and especially Indian art (I have some Indian in me). But when I did too much my hands would hurt and it would take days to recover. So little by little I had to give it up.

Then I found myself getting so tired all the time, and I gained weight due to fluid and swelling. I had to give up one of my jobs, and I love to work. I am a nurse and it has been my pleasure all these years to care for others and bring some happiness to those who are sick and hurting. I still am and do, but there are times that I hurt so bad that I cannot think of anything but myself.

I was first diagnosed with lupus, that was heart breaking as I have never been sick. But after denial and grieving, I accepted this. People can live long good lives with lupus. But when it just kept getting worse, with pain in my face, and my hands starting to curve and look strange, I decided that I should seek more medical advice.

Many tests were run and came back as scleroderma, I did not know what that was. I spoke with my doctor, who suggested that we do more tests and they turned up with CREST. And now some of the treatments for lupus aggravates the scleroderma, so I am not doing anything. I take lots of anti-inflammatory, and some herbs. I have learned that vitamin E can help the skin stay softer, and massages helps the muscle pain.

I am very scared with all the things I have read and seen, which are horrible and so disfiguring.

It will be hard for me not to work or do for others. That has been my life for so long. Before I got sick I could do so much and now I just wonder how I can get through a day. No more running, or much exercising, as it hurts my knees. I really do not know what to do next.

I hope that my story will help someone. I would love to hear from others and see what they are doing and how they are coping.

Thank goodness I am not getting lazy, I just have an incurable disease.

Keep on keeping on, folks.

To Contact the Author

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!

SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.