Faces of hope

In the fall of 1998 at the age of 25 and newly married, I delivered our first baby, a healthy beautiful girl. Not long after her birth, I noticed my hands would swell when out walking or exercising and occasionally turn blue. I was concerned so I went to the doctor and received my initial diagnosis – Raynaud’s phenomenon.

I was told that Raynaud’s was not uncommon, which I found interesting but not too worrisome. A couple of years later, while on vacation in Mexico, I noticed that the nice dark tan I usually get included a shiny tightness on my chest that I had never seen before. As soon as we returned home I went to my family doctor who took one look at me and immediately referred me to a rheumatologist, who gave me the scary diagnosis of diffuse scleroderma.

I wondered, “What is scleroderma?”  Like most newly diagnosed people, I went on the internet to research the disease. Perhaps not the best idea! There was fear, panic, and sadness. I had no idea what this disease would do to my body or how long I was going to live. I saw the effects this horrible disease had on many people and thought to myself, “Is all of this going to happen to me?” All this info only escalated my fears. I soon realized I had to stop going online, refocus, find trusted information, and develop a positive support system. 

I was 28 and our daughter was almost 3. What did this diagnosis mean for me and my family? I worried about our little girl, my husband and my dream of adding one more baby to our family. Since I am an only child, I have always wanted two children, thinking that they could experience life together and always be there for each other.  On my next visit with the specialist we discussed this dream. Since I hadn’t started treatment for my scleroderma, my husband and I decided I was healthy enough to try for another baby before my disease worsened.  In the winter of 2002 while being closely monitored by my doctors, I delivered our second healthy, beautiful girl. Finally, my first born had a sister. My family felt complete!

 The next several years passed with as much normalcy as I could hope for. I maintained a home and raised our girls while my husband worked. Although my body was changing and my energy was lacking some days, I was still able to enjoy my family, friends and work. When I was diagnosed I had been a hairdresser which was a super fun job. I met and worked with a lot of very cool people that I am still friends with today. Eventually my hands weren’t able to perform like they once did so I had to change careers. I spent the next years working as an Aboriginal Education Assistant in elementary, middle and high school classrooms. What a wonderful opportunity! It was and still is my dream job. I am grateful that I was a part of a team that had such a great impact on our youth.

Presently my life looks a lot different. Scleroderma has attacked my lungs. I also experience many symptoms: telangiectasia on my face and chest which I try to hide with makeup, Raynaud’s, tightened skin, finger ulcers that can hurt like crazy, reflux that limits when and what I can eat,  fatigue and aches and pains. Unfortunately, due to my lung fibrosis, I am being assessed for a lung transplant and no longer able to work. I take a handful of medicine daily and I exercise to try to stay as healthy and strong as possible. I go to the Scleroderma Clinic at St. Paul’s Hospital in Vancouver for my routine checkups and tests. It’s also where I connected with people that work with me and genuinely care about my health and future.

Some days are harder than others. Sometimes I have to listen to my body and just stay in bed all day. I do the best I can with what I have.  My worries about my family have shifted. One day I may not be able to contribute to the daily chores. My husband is wonderfully supportive, but I know it is difficult for him to have a wife that has health issues and limitations. I am thankful that I have seen our girls grow up through their school years. I now hope to see them marry and, hopefully, one day there will be grandchildren to spoil.

For a long time I was silent about my disease, just living with it the best I could, but no longer. I spread the word about scleroderma. I talk to family and friends about the challenges I face and allow them to help me on my bad days. I educate myself about this disease and I do what I can to promote awareness. I don’t know what the future holds but I do know I have a wonderful supportive family and great friends that will help me through it. I try hard to find something to enjoy and to be thankful for – every day!