"Twelve years ago they told me I would never see fifty
and I have beaten them by three years!"
Hello everyone. My name is Dianne and I have been diagnosed with CREST and pulmonary fibrosis for twelve years now. I worked as a graphic and commercial artist until three years ago and was the art director of a medium sized lithographic company. Like many others, I was misdiagnosed for over twenty years.
At first I was told I had arthritis, then rheumatoid arthritis. Lupus was also diagnosed and I was given treatments for them all. Nothing helped and I only got worse. My general practitioner had no idea what was wrong with me. I used to feel upset when I left his office as I knew he did not believe what I was telling him.
Twelve years ago, I went into a crisis. I was running a fever of 104° F and my kidneys were shutting down. I was taken to the local hospital where the emergency room doctor told me outright that he had no idea what was wrong with me or how to treat me and I should see my general practitioner about a reference to a specialist and go home and rest.
My old general practitioner had retired and thankfully, my new general practitioner was more aggressive. He sent me to one of the large downtown hospitals and to the best specialist in this city. Once there, he ran a myriad of tests; X-rays, blood and urine. After seven hours, he called my older sister and I to come in, and told us that I had scleroderma with CREST and Pulmonary Fibrosis. We had never heard of scleroderma before. This diagnosis opened a whole new world to both me and my family.
For nine years I continued to have regular three month follow-up appointments with him and also regular pulmonary tests, CT Scans, blood and urine tests. I tried enough medications to choke a horse but, nothing other than prednisone seemed to help.
While I knew the scleroderma was progressing and I could feel it, others did not notice. I looked "too healthy" to be sick. I am a big woman, 5'10", 220 lbs., and muscular. I refused to "give in." I had a demanding job, lived on my own, traveled and also had a cottage. I nursed my mother through her heart problems until her death, and nursed my older brother through colon cancer for two years until his death. I also looked after my mother's older sister in a nursing home. Then, on December 28th, 1999, I went into heart failure.
Suddenly, my disease hit me in the face. I was sent to see another specialist at another hospital in the city, who informed me I was a perfect candidate for a double lung transplant. After a year and a half of testing and many hospital stays, I was informed that they could not do the transplant, but to "stay in touch. We may have a new drug for you to test out for us". I went back to my original specialist and my general practitioner, discouraged and angry. My general practitioner was disgusted at the way I was treated and could not believe that they offered no follow-up.
This June I went into another crisis. I had a massive gastrointestinal infection. My liver and kidneys were a mess and I was having mild heart attacks from the heart failure. Again, they rushed me to the hospital. This time I had no pulse and my blood pressure was 45 over nothing. The emergency room doctors worked to get me back and I spent another week in the hospital. Thank goodness, my local hospital had improved since my last visit twelve years earlier. The doctors were wonderful. However, they got no help from the downtown hospital and they still won't release my health history.
Since coming home this time, I find myself much worse. I get very short of breath, the edema is a battle and the water pills just aren't doing their job. I have more reflux and am on Prevacid to help control it. I am also on lots of other drugs; Warfarin, a thyroid medication, Cozaar for the hypertension, and Prednisone. I can't tolerate beta blockers for my heart problems, but I carry nitroglycerin with me always. Last week I had another ultrasound and they found cysts in my kidneys; yet another hurdle.
My younger sister has moved in with me to help. She is very good, but has trouble understanding my "off days". I still drive my car when she isn't using it, and since quitting work I was asked to take over as president of our high-rise condominium. It can be a pain, but I have great people on the Board with me and they help me a lot. It also gives me an outside interest and stops me from dwelling on my problems. I still love to cook and force myself to try to eat a healthy diet with no added salt and lots of fresh fruit and veggies.
I guess I look a bit sicker than before, as people can tell if I am having a good day or not and they ask how I am really feeling. I try to keep a good sense of humor. My friends tell me I am a bit warped when I tell them the stories of what I am going through. The doctors have given me six months, but what do they know? Twelve years ago they told me I would never see fifty and I have beaten them by three years.
My specialist says my attitude just blows him away. As I tell him, everyone has problems. Some of us just have bigger ones to deal with.
I sold the cottage, which broke my heart, but I just could not look after it and it isn't fair to have to ask others to do it for me. I miss not being able to come and go as I please, and now I sometimes have to have my sister push me in my wheelchair as I just can't walk far any more. However, my little Shih-poo thinks it's a great mode of travel as she sits on my knees.
I'm just glad that this crummy disease is getting more exposure. Now, other people have at least heard of it even if they do not know what it's all about.
New email address needed.
Old Email Prefix: molly1990
Story posted 8-22-02
Email address revised 9-12-02
New email address needed 7-21-03
ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
United Way of Central New Mexico
United Way of Snohomish County
See ISN News for recent donors, including Pam Hop, Margaret Roof, Winifred Schillberg, Arnold Slotkin, and Juliet Youkhana. Plus donations in honor of Kim Thwaits, and in loving memory of Marta Marx, Jim Miller, and Arlene Marie Petulla.
Click Here to Donate or Shop
or click on the floating green DONATE sclero.org button.
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: