Faces of Hope
I would like to tell you all a little bit about the story of my Scleroderma journey and diagnosis. I was diagnosed 7 years ago after a few years of questioning and trying to figure out what was happening to my body. In 2009, I was living my typical active life doing all the outdoor activities, sports and coaching, things that I loved to do. Then, out of nowhere, my symptoms started with some unexplained muscle and joint pains, fingers and toes going white and being out of breath.
I spent several years going to specialist’s appointments and trying to self-diagnose and heal myself with physiotherapy, chiropractors, acupuncture and much more. I started to think that everything I was experiencing was all in my head. No one could physically see the pain I was in because it was all inside my body. This was very difficult to explain. Finally, in 2011 after one blood test, I was diagnosed with Scleroderma. This blood test proved that I had an overlap of syndromes, which was characterized as a mixed connective tissue disorder.
Once diagnosed, I was referred to see a specialist in Vancouver, who specialized in Scleroderma. My first visit with Dr. Dunne was a blur; I just couldn’t wrap my head around the diagnosis. How did this happen? What did I do? I remember travelling back to Valemount and my husband and I looked at one another asking “What the heck is Scleroderma?” I was so scared; wondering how long was my life span? What am I going to tell my daughter… my family?
This is my life with Scleroderma. I live with GERD, Raynaud’s syndrome, Dermatomyositis, SLE, Sjogrens syndrome and Rheumatoid arthritis. My daily challenges living with this disease vary from day to day. It is very frustrating, since I am a “control freak”, not knowing what the day will look like! With every syndrome there are medications to take. I used to hate taking medications and now I need to take them to manage symptoms and pain. No matter how I feel, I put a smile on my face, go for a walk, breathe in the fresh air and am thankful.
So, after several years of family, friends and co-workers asking, “what is Scleroderma?”, I was inspired to start a walk here in Valemount. The goal of my walk is to raise awareness about Scleroderma by spreading the word and to raise funds for research. We need to find a cure for all of us fighting this rare disease.
With continued support from my family, friends and the community of Valemount, we will be hosting our 3rd Annual walk on June 29th. Please join us!