My Story is dedicated to the memory of Jane Lee the lady who told me about “some website called road back or something like that.”
Fifteen years ago I had Raynauds syndrome and my esophagus started to act up. My doctor thought the raynauds might be damage from rock climbing. Almost 10 years ago I gave birth to my first son and my health during the pregnancy was really bad. I couldn’t eat because of indigestion and my esophagus got worse.
Eight years ago during my second pregnancy, my skin started to get tight and my hands started to stiffen up. During this whole time my feet were getting stiffer and so were my other joints. I chalked it all up to abuse my body suffered form years of sports, especially rock climbing and skiing. I also thought maybe my body just didn’t like being pregnant.
After my second son was born, I had surgery to repair my stomach muscles (they were so tight from climbing they ripped during my pregnancy) and after that I started to get really exhausted. My digestive system had not worked normally for years, my hands were so stiff I couldn’t peel fruit or hold a pen well. I still thought it was just old sports injuries and the fact that my body didn’t like being pregnant. My doctor thought it was something else and sent me to a rheumatolagist.
After 6 months of tests I was told I had Sclerederma and that I probably wasn’t going to die from it but that my symptoms would slowly get worse and there was nothing really available to help me. I was 40 years old, I couldn’t eat much, I couldn’t carry my kids laundry baskets up the stairs, I couldn’t get through a day without a nap, I found carrying for my baby and 2 year old exhausting, I felt that I was going to miss out on a lot of stuff with my kids because of my health. My bowel was covered in scar tissue and I was worried the SD would move into my organs. I was afraid I wouldn’t be around to watch my two boys grow up. I just couldn’t accept this.
Through a friend of a friend I heard about “some website called road back or something like that.” I came to this web site and found hope and an American doctor. My Canadian MD had never heard about the treatment for SD only for RA but she was willing to work with me to try it.
With her help I got an appointment with Dr. D. T. in Boston Mass. My husband and I drove to Boston from our home in central Ontario while my folks watched the kids. Dr. T. examined me for over an hour and then said words that I will never forget. He said he thought I was a good candidate for AP. I asked what he thought the chances of it working for me were and he said very high for a stoppage of symptoms and that there was a chance they might reverse. I felt like I could fly. Someone besides me believed I could get better. That night my husband and I got a bit tipsy in a local climbers pub in New Hampshire and the next day we went downhill skiing but I could only manage an hour on the hills. Still I was filled with joy, I had real hope not just my own determination to get better.
When we came home I started taking Minocyclin twice a day. Within a month my hands stopped hurting. I remember this moment because it suddenly struck me that I was not in pain, it felt strange. Over the next year all my other symptoms went away. After two years on the Minocyclin I stared walking 5 kilometers regularly and I found I could ski a full day again. At the end of my first full day of skiing I sat at the top of Curry Bowl in Fernie BC and cried like a baby I was so thankful to be healthy again. Its now two years after that and I am completely healthy.
After four years of taking Minocyclin I went off it last spring but my immune system is having trouble fighting off flu’s so I am back on a maintenance dose. I have stared climbing again, I walk 40 to 50 kilometers a week, and I can ski top to bottom in Fernie day after day on our winter holidays with no problem. I have lots of time and energy for my two boys.
I hope when you read this it gives you hope and a sense of fighting spirit. I really believe that AP gave me back a life I recognize as my own. I try to live every day with joy, hope and humility. I try to take something good from every situation. Being sick with SD taught me to have patience and to be thankful even for the smallest things. Thanks for reading this and like Lance Armstrong says “Live Strong!”