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 9 years ago after a few years of questioning and trying to figure out what was happening. In 2009 I was living my typical active life doing all the outdoor activities, sports and coaching that I loved to do. Then out of nowhere my symptoms started with just some unexplained muscle and joint pain, fingers and toes going white and being out of breath.
After several years of going to specialist’s appointments and trying to self- diagnose and heal myself with physiotherapy, chiropractors, acupuncture and much more, I started to think as if 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 which was very difficult to explain. Finally, in 2011 after only a simple 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 and said, “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, Dermatomysositis, 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 each syndrome there are medications to take. I used to hate taking medications and now I need to take them to manage symptoms and pain. But no matter how I feel, I put a smile on my face, go for a walk with my puppy, breathe in the fresh air and be thankful.
So, after several years of family, friends and co-workers asking the same what is Scleroderma question, I had a friend, who inspired me to start a walk here in Valemount. The goal of my walk is to raise awareness about Scleroderma by spreading the word and raising funds for research, so we can find a cure for all of us fighting this rare disease.
Last fall I had the opportunity to participate in the SPIN program. What an amazing program!! This taught me how to be a support group leader, to create a positive environment, to be a great listener and to help and encourage people with all types of Scleroderma. But most of all, to let you know that you are not alone and there will always be someone there for you. As of right now I am looking into setting up virtual group meetings in Northern BC. If you have any interest in joining, please email. Thank you for reading to my story.