People tell me I have earned my credentials as a certified patient the hard way after almost twenty-five years. Many times I have wished I could drop my diseased body off at the laundry and pick it up the next day, fresh and clean and ready to face the world anew.
The birth of my son, Eric, in 1979 was a joyful occasion; an experience to celebrate and feel grateful. Six weeks after his birth, I could hardly pick him up. My hands were painful, hot, and so swollen I could not shut them. I frequently opened and closed my hands to try to relax the stiffness, hoping the pain would ease so I could safely pick him up, unpin his diaper, change him, and feed him.
The winter of 1979-1980 was the winter of the energy crisis, and my hands were constantly blue due to the government's request to keep thermostats as low as fifty-five degrees at night! Diagnosis was not easy. The test results did not fit into a diagnosis; I looked fine on paper! It was hard for my family to understand why I complained so much when the tests showed nothing was wrong.
Eventually, my family doctor called my condition rheumatoid arthritis. I knew that did not really fit my symptoms. His treatments were not very helpful and I continued to get worse. Friends and family urged me to go to a specialist. I resisted, but eventually, a year later, agreed to see a rheumatologist. This doctor looked at me and immediately recognized that I had a connective tissue disease called scleroderma. I had seen it described in an Arthritis Foundation brochure, but had no idea the impact the diagnosis would have on my life.
Very few people are aware of this disease now and even fewer knew of it in 1979. I often tell friends that scleroderma is a cousin of lupus, because people are much more likely to have heard of lupus.
This life-changing illness hit me in the first several years of my son's life. I was young, in my early and middle twenties. Though doctors and researchers may have more specific explanations and understandings about this disease, what I knew at the time was that I desperately hurt. I was always cold. My hands were blue, and I had ulcers on the tips of my fingers. I had terrible acid indigestion. Swallowing was painful. Breathing deeply made my chest ache. In addition, I began to frequently feel strange palpitations in my chest.
Eventually, I blacked out at home, and my family called the emergency squad to take me to the emergency room. Six weeks later, after confirming that my heart did not reliably conduct the electrical impulse to cause my heart to beat, I had surgery to implant a cardiac pacemaker. That was the beginning of some life-threatening events that still happen occasionally. I am absolutely dependent on my pacemaker: if it does not beat, my heart does not beat.
Today, I still have diffuse scleroderma, although it is not progressing, and its residual damage. Now more than twenty years later, I still have aches and pains, tire easily and take naps, and require visits to six or seven specialists. I take twelve different prescriptions, give or take a few depending on the day, and I still take a nap on most days. Most of my organ systems have been affected, including heart, lungs, gastrointestinal tract including Barrett's esophagus, endocrine disorders (thyroiditis and early menopause), Sjögren's, Raynaud's phenomenon, depression, and some skin involvement.
With the help and encouragement of friends and family, I have been a mother for twenty-four years and a wife for twenty-seven years. I completed my Master's degree in counseling in 1996 and now work at my church counseling on a very part-time basis. With a lot of help from my friends, I made a choice along with my husband and son to find opportunity hidden within the crisis of my illness. We found friends, family, and faith that we may not have discovered had scleroderma not happened. We found inner strength and capabilities we could not have imagined.
I certainly never expected to write a book! Along with my husband, who suffers from a pituitary tumor and complicating endocrine disorders, I have written Living Better: Every Patient's Guide to Living with Illness.
Scleroderma is life changing! I encourage each of my fellow scleroderma friends to take one day at a time, learn as much as you can about your illness, seek the best medical care you can, and take the best possible care of yourself each and every day.
New Email: [email protected]
Story posted 11-15-00
Story edited 7-17-03 SLE
Story Edited 8-4-03 JTD/V1
New Email posted 07-20-06 SLE
New Email posted 05-12-09 SLE
Story Artist: Shelley Ensz
Story Editor V1: Judith Devlin
Cardiac (Heart) Involvement
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.