I am fifty-three years old. In 1971, I had the first symptoms of Raynaud's phenomenon. I was young, single, and starting my first job as an accountant at a university.
I noticed that when I held objects, such as the phone, or when the weather was cold, or when I was in an air-conditioned room, my fingers would turn white or deep blue, almost purple. For that reason, I went to the doctor, and he said this was a symptom of Raynaud's phenomenon. He also said I did not have the illness, just the symptoms.
In 1973, I developed an esophageal hernia with reflux and stomach pain. Doctors said I also had many stomach ulcers. Medications controlled these symptoms, and I continued to live my life normally. I was a smoker for twenty-five years, and my condition grew worse.
In 1988, I had a black heart-finger (middle finger) that stayed that way for a week. I tried many alternative medicines trying to heal this condition, even acupuncture. Finally a doctor took me to the surgery room and injected a liquid in my neck to help increase my blood circulation. It was a very bad, painful, and dangerous solution. It was supposed to be done three times, but luckily by the second injection, my finger had returned to normal. This procedure scared me so much that since that day, I never smoked again.
I continued a normal life with Raynaud's phenomenon episodes, reflux, and ulcers. In 1997, when Hurricane Hortense struck our island, I had double pneumonia. The day after the storm I was rushed to the emergency room and hospitalized. I was very ill. In the hospital I was diagnosed with CREST and then with scleroderma. I was out of work for about four months. It was not easy for me because I had always been a hard worker.
I worked in high positions such as finance director, system and procedures director, budget director, which included many stressful duties. I had to change many things in the way I did my job in order to continue working. Since then I have developed morphea, cellulite, and phlebitis in my legs. At times my legs are red with other painful, dark marks. The marks start small and then grow. Eventually, the skin becomes hard as a rock. I developed rosacea on my face, so I am always watching my skin. I also have developed little finger ulcers.
Asthma is another illness for which I have been hospitalized many times. My body is always cold, including my toes. Sometimes I woke up very tired, but still had to go to work. I tried to do my best in my job and thankfully, I managed to complete my thirty years in public service work. I retired from service on December 31, 2001. I did not want to stop working, but it was the best thing for me. Now I feel free of stressful situations.
I have ups and downs, but by reading others' testimonies, I am not so bad off. I try to feel fine and keep going. When I can dance, I dance. When I feel tired, I simply do nothing. No matter what, I do my best.
I am now working as an independent travel agent from my home. Without much investment, I am doing what I always wanted to do and I love it! I just want to keep working since I enjoy being useful. I am planning to go on vacation soon, thanks to this job. I recommend a home-based business. It works for me and has been a new, lifetime opportunity.
I think I have been blessed because, after all, I have accomplished my duties as wife, mother, and public servant. I am still here enjoying the beauty of life. And no matter how I feel, I keep on! May God bless all of you!
Old Email Prefix: awildae315
Story posted 3-16-02
Story edited V1 8-3-03 JTD
Story edit V1 posted 8-5-03
New email address needed 05-01-08 SLE
Story Editor V1: Judith Devlin
Voices of Scleroderma Volume 1
The story on this page is featured in the top-notch Voices of Scleroderma Volume 1 which features articles by top scleroderma experts, including Dr. Joseph Korn, as well as 100 true patient and caregiver stories from this website! The book delivers excellent information and support for scleroderma patients and caregivers. It's a great way to inform family and friends about scleroderma, too!
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.