Up until 1999, I considered myself a very healthy person. All that changed in May of 1999 when I was diagnosed with polymyositis and Raynaud's phenomenon then, in March of 2001, with pulmonary fibrosis.
In September of 1998, my hands and neck became very stiff. I thought it was due to yard work so, of course, I ignored it. Weeks went by and my condition was not getting any better so I went to my chiropractor in order to work out these kinks. She told me I should be tested for Lyme Disease. Even though I never saw any evidence of a tick bite, this made sense to me since I had been outside doing lots of yard work and Connecticut is an area where there have been many occurrences of the disease. I had my doctor test me for Lyme and he put me on antibiotics that day. The test results came back positive- negative, which means in plain English, that the test results were inclusive. By that time I was starting to feel worse and found it hard to sit down and walking up stairs was impossible.
In October I went to see a doctor who specialized in Lyme disease. He began my treatment by ruling out what I did not have. The first disease to be eliminated from the list of possibilities was meningitis. On Christmas Eve 1998, I went in for a spinal tap. It came back negative, which was good news—no meningitis! The next step was to send me to a rheumatologist to rule out any disorders in that field. My story might have been very different had this doctor not missed the polymyositis. He concurred with the diagnosis of my other doctors and sent me on my way.
My liver tests continued to be elevated about three times the norm. Even though all of my tests came back as positive-negative, or inconclusive, the only thing they could come up with was Lyme Disease.
In April of 1999, the doctors put me on intravenous (IV) rocephin for nine weeks with the hopes that this treatment would be effective as all other antibiotics had failed. After the ninth week I still was not any better. I found it hard to breathe, swallow and walking was almost impossible. I needed help getting to and from the bathroom and the bedroom.
All the while I continued to work. When I traveled I checked into handicapped rooms and asked for wheelchair assistance at airports. I felt so bad and cried all the time and, believe me when I say that, I am not a crier. My whole body hurt. I felt like a ninety-year old person had taken over my body and I was only thirty-six. I just kept thinking, "I have to keep going or I will lose everything I worked so hard for."
I continued to search for answers about my condition and on May 21, 1999 I went to see a liver specialist at Yale University School of Medicine. He asked me if I had ever been tested for HIV. My first thought was, "Great, I have AIDS. How am I going to get through this?" My answer was no. He admitted me to the hospital that day for testing. My HIV test came back negative, however my CPK's (blood test for creatine phophoknase) were 11,200 (normal is between 55 and 127). It was at this time that I was diagnosed with polymyositis. I never had Lyme Disease. They confirmed the polymyositis with a muscle biopsy on May 24th. I was so happy that they had finally diagnosed the problem. I am going to live! Polymyositis is not life threatening unless there is lung involvement, and I did not have that! I was released from the hospital on May 25th with a prescription of 60mg of Prednisone per day. I was on the road to recovery, or so I thought.
I found a new rheumatologist and started treatment for polymyositis. He started me on methotrexate. My CPK levels went up and down over the next two years and I developed Raynaud's Phenomenon. My dry cough came back some time in February of 2001, but I adjusted to my new life. I could not do everything I had done before I got sick. My mountain biking and rock climbing days were definitely over, but I was grateful I was not in any pain. I was able to move around some although more like an old lady than a thirty-seven-year-old, but I was okay with that.
On March 3, 2001, my world came to a halt when my doctors discovered I had developed pulmonary fibrosis while on the methotrexate treatment for polymyositis. My rheumatologist sent me to a pulmonologist and he confirmed the disease. He told me I had to treat my health like my second career. Great, like I did not have enough to deal with already. I did not want my health to be my second career. I just wanted to wake up and feel good and now I knew that that was never going to happen. I went home and looked up pulmonary fibrosis and what I discovered was not good. Everything I found came up the same prognosis: three to five years maybe four to six years and lung transplants. I felt like I had just been given a prison term with no hope for parole. Down into depression I went, all the way. The doctors added Zoloft to my already quite long prescription list. Zoloft is an antidepressant medication. They also changed my drug from methotrexate to Imuran. Imuran is less toxic on the lungs. And as if that was not enough, in November of 2001, I ended my six and a half year relationship with my boyfriend. So much for that support! Needless to say, December was tough, but I love a good challenge.
In February 2002, the Imuran was not working and I was scared something else was going to go wrong, so I pushed the doctors for something new. They put me on IVIg therapy. On March 12, 2002 I received my first treatment. I started to feel better and over time my CPKs went down to 267 and I was down to 5mg of prednisone and 25mg of Imuran. I lost twenty-five pounds and was feeling great. I had no breathing problems or cough. The lung test remained the same and I felt and looked better than I had in years. I even went off the Zoloft.
On April 13, 2002 I had my first date in over seven years. Chris was unbelievable! A dream come true. Not only was he the most compassionate and thoughtful person I had ever met, he was also great looking and in great shape. On our first date I explained my medical problems to him, and to his credit he was still up for the challenge of a second date. He has been by my side ever since. He is my angel.
In January of 2003 I turned forty. Chris and I went on vacation for two weeks. It was a trip I will never forget. It was also the first time I had ever taken two weeks off in a row from work. I felt great and never coughed and I got lots of rest. I was taking 10mg of prednisone and 50mg of Imuran. When I returned home, I went in for a breathing test. In six months I had lost ten percent more of my lung capacity. I had somewhere between forty-eight and thirty-eight percent lung capacity left. It was time to try a new drug. So I went off the IVIg and started Remicade. It was also time to really make changes in my life. This was the turning point.
Email: [email protected]
Story posted 12-29-03
Story Artist: Ione Bridgman
Story Editor: Judith Devlin
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 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.