Let me take you back. After the birth of my eldest daughter, 17 years ago, I noticed what I thought was a piece of steel wool embedded in my left index finger. Mentioning it to my family doctor at my daughter's six week check-up, after a closer examination he diagnosed it a Raynaud's Phenomenon. Not knowing anything about it, and not really worrying about it, I went about my daily life and took care of my child.

After a few months, my doctor sent me to see an internalist who immediately put me on medication (most of which made me very ill) not liking the feeling, I asked for a second opinion. He in turn referred me to a rheumatologist from Kingston, Ontario. That was the first time that I started to understand what was happening to me. He then told me about Scleroderma and CREST Syndrome.

He then put me on drug therapy which helped me for a short time. Having a second child would then put me in more jeopardy. You see, I was then 24 years old and I felt that one child would be too lonely, she needed a playmate and a friend. Having a second child would put everything into remission but once the child was born, the disease then comes back with a vengeance. It was my choice to have a second child and leave it in God's hands. On July 7. 1982, my second little angel was born and at that time I decided to have a tubaligation done.

The pain and mobility was getting unbearable. Exactly when I developed Scleroderma I am not sure. It just sort of crept upon me. By this time I am visiting my doctor (a two hour drive from home) every three months. I am diagnosed with Systematic Scleroderma. The medication which is a handful three or four times a day, is now starting to make me feel sick. They assure me that once my system gets used to it I will be fine. After repeated visits to the doctor, I find out that I am 19 weeks pregnant.

Devastated, my life really changed from that point. My ex-husband lost his job, we lived in a small two bedroom apartment, and mentally I was not ready to have a third child, but what choice did I have and what about the baby with me taking all this medication. On May 7, 1985, she was born. Luckily with ten toes, ten fingers, rosy cheeks and a head full of hair, and she was healthy.

I thank the Lord for her and for all the joy that she brings. But things seemed to be getting worse. I had to get a job, went back to school, and took care of the kids while my ex-husband did his thing. The stress was getting worse and I knew that the marriage was over.

Being alone wasn't so bad. However, soon I found myself in the hospital again, this time with double pneumonia. My kids were distributed among my family. While in the hospital I met my present husband, Harold. Looking my worst, he still kept coming back to see me. It was fate and we both knew it. That was June 2, 1988, and the rest is history. I have since then changed doctors because I wasn't getting anywhere with the one I was seeing, he wasn't listening to what I was telling him, in other words, the partnership was getting stale.

In Sept. 1995, I was hospitalized at the Ottawa General for further tests to see how far the disease had progressed. The results were not what we expected. Not only was I getting more nausea, vomiting, severe bouts of diarrhea, extreme pain and fatigue, but it was also discovered that I have a very large pericardial effusion. About one and one-half quarts of water around the heart. What to do about it, they are not sure.

I am presently taking: losac, prepulsid, and cyotec for my stomach, digoxin, cardizame for the heart, indocid for inflammation, and lactaid for lactose intolerance and tylenol 3 for pain. In the past, I have tried methotrexate and predizone, but the side effects weren't worth it.

I have never questioned "why me". All things happen for a purpose and I know it has made me a much better person. I really appreciate my family and the little things in life. I truly feel blessed every day.

Even with more facial telantations than usual, ulcers on my hands, feet, elbows, and ears, and very limited mobility at times, through the love and support of family, friends and the church, I really think that I am lucky.

God bless all and I will keep you posted as to what happens next. My email address is: howie@cnwl.igs.net If anybody has any questions or any information about CREST Syndrome, please feel free to contact us.

Sincerely,

Harold and Monique

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