I was thirty-eight when I was diagnosed with scleroderma. That was two years ago, and since then my life has changed dramatically.
At the end of 1999, I began having unexplained aches and fatigue, as well as swelling and numbness in my hands. I suffer from Raynaud's, even though I live in a southern state where it is always warm.
My family has a history of Autoimmune diseases, from rheumatoid arthritis to lupus, so I thought my Raynaud's was related to arthritis. My aunt had been diagnosed with lupus at a well-known clinic in our state, so I made an appointment there.
After a week of tests and a return trip a month later, I was given the diagnosis of scleroderma. The awful thing is, my first thought was, "Whew, at least it is not lupus." Little did I know. Once I realized what scleroderma involved, I was devastated.
Through a friend I found a wonderful rheumatologist who I now see every month. In the fall of 2000, I developed severe hypertension and my rheumatologist sent me to a nephrologist. He put me on medication, but my blood pressure stubbornly remained high.
In July 2001, everything came to a head. I was suffering from what I thought was a bad summer cold or sinus infection. I saw my family doctor, who prescribed an antibiotic and bed rest. Several days later I was worse. I had trouble breathing, bad headaches, a rapid heart beat, and nausea.
Finally, when I could barely get a breath, my husband rushed me to the hospital. My blood pressure when I arrived in the emergency room was 250/150. The doctors told my husband that I would have died if we had waited just five more minutes to come in. I had suffered congestive heart failure brought on by a renal hypertensive crisis. I spent three days in the intensive care unit and a week in the hospital until the doctors found the right combination of blood pressure medications.
To say that experience was an eye opener would be a major understatement. I have learned to take every cough, hive and symptom seriously. I bless every day that I am able to be up and around, walking, shopping for groceries, driving myself, taking care of our home, and all the little things we normally take for granted.
I do not know what is ahead of me, but who does? I try to stay positive and optimistic, otherwise my loved ones, my husband and family, just feel more helpless.
I pray for a cure in the very near future. I am lucky. I have a wonderfully supportive and understanding husband, a warm and loving family, and an excellent team of doctors who take extremely good care of me.
I cannot stress enough the importance of finding compassionate physicians who are knowledgeable about scleroderma. I am not giving up. I plan on being around for a long time.
Story edited 10-31-02
Story posted 11-8-02
Vol. 2 matching edits 01-20-05 SLE
Story Artist: Shelley Ensz
Story Editor: Judith Devlin
Congestive Heart Failure
PDF Brochure: What is Scleroderma?
This story is featured in the book Voices of Scleroderma Volume 2
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: