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.
“SCLERO WHAT ………./!?”
I remember very well the day I had met with my local rheumatologist at the hospital for a follow up exam after several months of tests. He said, “Jen I believe you have an autoimmune disease called Scleroderma.”
“ Ok.” I said. “ What does the treatment plan look like?” I was familiar with autoimmune diseases as they ran in my family. I had also been living with and managing hypothyroidism for many years. I figured like other conditions there must be a reasonable treatment option. No problem. I’ve got this. Little did I know the storm had just began and I was about to enter the fight of my life.
When Scleroderma Entered My Life
I was 19 when scleroderma hijacked my future goals. I spent a few years being angry with my body, grieving the future I had dreamed for myself, and feeling isolated, even when I was surrounded by people who loved me but could never truly grasp the degree to which my life was changing. It happened so quickly. I went from developing a pre-professional dance career to having limited capacity for sustained movement within a few weeks.
With a history of joint issues, I was easily misdiagnosed and treated for rheumatoid arthritis. The prescription cocktails I had tried, however, were not preventing the skin on my hands, arms, chest, and face from tightening. The chronic fatigue and pain were beyond any physical discomfort I had ever experienced before. After a few years of struggling to develop an effective treatment plan, I was accurately diagnosed with scleroderma and learned that the symptoms I had been experiencing in my extremities were typical of Raynaud’s Syndrome. However, it would still be a few years before finding health care professionals willing to work with me and for me.
Living with a disease that has no cure!
Every day I’m reminded that I have Raynaud’s and Scleroderma. These diseases have given me a wakeup call. I have become a better person through this experience and realize just how fragile life is.
I’m not one to sit back and let things happen so, when I was diagnosed, I took charge. This disease was not going to consume my life or control me. My husband, David, and I sat down to discuss the future and agreed to starting on our “bucket list” rather than waiting until retirement. At the top of our list was to experience cycle touring the world on our tandem bicycle. Though I had lost strength and dexterity in my hands, I still possessed the strength in my legs and the determination in my heart to fully enjoy the cycling and adventure. Since making the decision, we have taken trips ranging from six to 15 weeks; experiencing the sites, history and people of Australia, Ireland, France, Denmark, Germany, Austria and locally. We do not intend to stop any time soon.
We’ll see what the future brings. Worst case scenario, David has agreed to put a motor on the tandem!!!!!
We all need to keep healthy and participate in life. That I am still able to ride our tandem and see the world, while getting in the ever-important exercise for my overall health, is demonstrating my control over my destiny.
Every day I am so thankful for my husband David’s love and support; and the support of family, friends and my medical support team (rheumatologist, gastroenterologist, family doctor, chiropractor, massage therapist, physical trainer, physiotherapist, and podiatrist).
This is the story of the progression of my health problems.
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!
I was diagnosed with systemic scleroderma in 2001. I have some early interstitial involvement in my lungs that has been stable for several years. My GERD symptoms are manageable. I’m really thankful to my naturopath for keeping finger ulcers under control with homeopathy and herbs.
Chronic fatigue is a big challenge and on-going balancing act. Raynauds is very limiting as well. Despite that, I have a high quality of life living in the Yukon. Daily life takes a lot of effort but the love and support that I receive from family, friends and community as well as opportunities to be creative make life beautiful. Singing is not only good exercise for my lungs, it is a way of expressing myself and sharing my experience with others. To hear some of my music, visit www.NicoleEdwardsMusic.com