I have always been a fast paced, high strung kind of person, the typical type-A personality, so when it began to take every ounce of energy I could muster to get out of bed, I knew something was wrong. I went to see my long time family doctor with flu-like symptoms, had the routine blood work drawn, and was told to take a few days off to rest. The next morning I received a phone call from my doctor saying I needed to be referred to a hematologist because I was severely anemic (low blood volume).
I had been in nursing as a registered nurse for ten years and could not believe I had lost that much blood without noticing it. So the nightmare begins. After two blood transfusions, four endoscopies and colonoscopies, two different gastrointestinal specialists,and lots of money, I was diagnosed with watermelon stomach. This diagnosis only took two years in coming. Needless to say, by then my family and I were pretty disheartened.
I was convinced I would die before anyone decided how to help me. My fingers stayed swollen and turned blue anytime I exposed them to cold temperatures. I stayed bloated most of the time and never seemed to eat, and began to notice changes in my bowel habits. The fatigue and just plain feeling bad all the time was the worst, but I continued to believe that after each laser treatment on my stomach I was cured. None of my doctors could understand how all my other complaints went with the watermelon stomach, but I knew they did!
Finally, my hematologist decided maybe we should find out why my ANA titer always came back so high and so he referred me to a rheumatologist. After three and a half years I was officially told I had scleroderma and that there was no cure or treatment. The best I could hope for was to be able to treat the symptoms. That was six months ago. Since then I have gone for a second opinion at the constant urging of my family and have started some rheumatic medications.
I realize this story is not much different from the many I have read over the past few months, but I felt like I needed to share it with people who could really understand how this disease changes your life. It cannot be compared to any other illness that I can think of. At least with cancer you can sort of know what to expect and how to proceed with what is left of your life.
I am fortunate as I am forty years old and have raised five children. My youngest child is eighteen, and I have two wonderful grandchildren whom I adore. I only wish I still had the energy in my body that my mind and heart still possess.
Thanks for listening.
New email address needed 08-06-09 SLE
Old Email Prefix: ser_24
Story posted 4-26-02
Story edited 7-22-03 SLE
Story Artist: Ione Bridgman
Pulmonary Hypertension Stories
The story on this page is featured in our book, Voices of Scleroderma Volume 2! ISN.
ISN Artist Ione Bridgman created original artwork to illustrate this page. She is 90 years old, and lives in New Zealand. Her lovely paintings illustrate many of our pages and the covers of our Voices of Scleroderma Book Series.
SCLERO.ORG is the world leader for trustworthy research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension. We are a service of the nonprofit International Scleroderma Network (ISN), which is a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team, or Volunteer. Donations may also be mailed to: