Scleroderma – Living with a disease that has no cure
By Rosanne Queen
North Shore News article is HERE
2019 update: Happy to report, nothing has changed in the last year. People always ask, “how am I doing”? After a lot of thought, my response is “I can live with the day-to-day pain and still maintain my quality of life. So, life is good!”
In 2018, I started off the new year with one more medical issue added to the list!
I’ve now been diagnosed with Interstitial Lung Disease “ILD”. Unfortunately, I have joined the thousands of patients with this very serious condition. The condensed version; it’s scarring on the lungs; the skin is thickening. We’ll see what the future brings… still want to cycle tour on our tandem. Worse case scenario, David has agreed to put a motor on the tandem!!!!!
I have now lived a year with rheumatoid arthritis, curled fingers, restricted movement in my wrists, severe calcinoses, ILD, Sjogren’s, Raynaud’s and acid reflux but the good news is with the regime of drugs, the pain is now manageable. I still haven’t mastered grasping something in my palm or an easy way to grip a glass of wine! Can’t anything ever be simple with Scleroderma!
I’m ever so grateful for the love and support of my family and friends and still looking forward to the future of travelling and living life to it’s fullest!
As with many diseases, I'm fine one day and sick the next. Cold hands are a regular occurrence; "cold hands – warm heart". It was in 1992, while downhill skiing, that I noticed that my thumb had gone white. Concerned about potential frost bite, I consulted with my family doctor. She referred me to a specialist who, after a time, diagnosed me with Raynaud's Syndrome. I had never heard of it; "What is it?" A simple explanation is that the small blood vessels go "spastic", severely restricting the blood flow, therefore cooling and limiting the oxygen to the affected areas. The condition is most obvious at the extremities, fingers and toes, but also affects other parts of the body. The news was that if it became a severe condition, I could eventually lose my finger tips. Oh great!
Life continued on, but downhill skiing was definitely out. The activities of daily living trigger Raynaud's episodes; attacks cause my hands to turn white, purple, blue and then pink.
Unfortunately, my hands are in Raynaud's mode most of the time, but luckily my fingers do not develop open sores. The internal organs react to the lack of blood flow and cause a painful coldness to my core. I wear gloves indoors as well as outdoors. I have a heated vest, heat packs for my feet, and I soak in our hot tub before going to bed to warm my core so that I can go to sleep without being chilled. I have been prescribed Viagra, yes Viagra, to help shorten the episodes and maintain blood flow to my extremities. Always in the back of my mind is "will I lose my finger tips or worse?"
Moving forward to 1997, the constant swelling of my hands and shiny thick skin lead me to consult a rheumatologist. During the visit, I'm told "You have scleroderma". Shocked and dazed, I was not sure what questions to ask and not really taking in what I was being told: "Thick skin … hardness around the organs … nothing we can do … make you comfortable … know in about five years if you'll die… get really sick or just maintain the status quo … unfortunately there is no cure." The news was shocking and like most people these days, my husband and I searched scleroderma on the internet. The information about the disease was scary and depressing, with no light at the end of the tunnel. About that time there was “a made for television” movie about Bob Saget's sister who had scleroderma and died as a consequence. That was the image people saw when I told them about my diagnosis. Not a good outlook.
I'm not one to sit back and let things happen so 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 on committing to experiencing life and starting on our "bucket list" rather than waiting until retirement. At the top of our list was to experience travelling in different parts of the world by cycle touring 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 from 6 to 15 weeks; experiencing the sites, history and people of Australia, Ireland, France, Denmark, Germany, Austria and locally. We are always thinking ahead to our next trip and do not intend to stop any time soon.
Over the years, I have seen my body change; tightening skin and swelling of my hands are causing my fingers to permanently curl; my face is so tight it restricts me from opening my mouth, requiring me to cut my food into very small pieces; reduced elasticity of my esophagus is making it more difficult to swallow and resulting in severe acid reflux; scar tissue forming in my lungs has reduced my breathing capacity. With the overall tightness of my skin, I feel like a size medium body in a size small skin.
I have spent many years trying alternative health care options, continuing exercise programs and staying positive. Like most people with this disease, taking medication becomes a big part of our lives. I can't imagine the quality of life I would have without them.
What I can tell you is; this disease has given me (us) a wakeup call. 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 David's love and support; and the support of family, friends and my medical support team (family doctor, physical trainer, chiropractor, massage therapist, physiotherapist, rheumatologist, gastroenterologist and podiatrist).
I think that I have become a better person through this experience and realize just how fragile life is. And, every day I'm reminded that I have both Raynaud's and Scleroderma.
Desirable blood flow Blood flow in Scleroderma/Raynaud’s
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 mis-diagnosed 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.
No longer able to pursue dancing as a career, my attention shifted towards wanting to help others like myself find ways of moving without pain. The human body has always fascinated me, so I chose to study kinesiology. While beginning my undergraduate degree, I had begun to establish a community of health professionals that influenced my drive for a deeper understanding of what enables health and well-being. I experimented with holistic practices and found adaptations for my life style that helped me heal while still trying to find medications that would fix more problems than they created. When I located a rheumatologist, who included a holistic view of health into her practice, I finally established a complete “tool kit” for managing scleroderma that included medications that were preventative.
My frustrations navigating the health care system, and the impact social inequalities have on accessing treatments, fueled my desire to break down barriers to well-being for others. At nearly the end of my Kinesiology degree I chose instead to complete a bachelor’s degree in Health Sciences at Simon Fraser University with a minor in Political Sciences. I realized that, had I not found health professionals who had affordable services and who were willing to hear my perspective as a patient, the struggle to complete my post-secondary education would have been defeating. Regardless of your physical abilities, these milestone achievements should be accessible to everyone and advocacy seems like the best way to make that a reality.
Directing My Desire to Do Something About It
Since discovering the Scleroderma Association of B.C. my quality of life has improved. I have connected with a community of people that are resilient and have witnessed their power to accomplish amazing things together. Supporting Canadian research initiatives that aim to develop new diagnostic and treatment options, raising awareness within our communities, and sharing information with patients and their families that assist in improving well-being are goals we continue to achieve. Most importantly, there is a constantly growing network of support for those of us who are affected by this intimidating autoimmune disease.
It has taken a decade to come to terms with my physical limitations and the uncertainty of my future, but I’ve chosen to not let scleroderma control my life. I have recently been married, begun a new career, and started dancing again – all milestones I did not imagine would happen for me ten years ago. Scleroderma does not define who I am, but it does contribute to the perspective from which I see the world and function within it. Through my role within the Scleroderma Association of B.C., I will continue harnessing my experiences and knowledge to bring social awareness, justice, and support to our community.
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. Chronic fatigue is a big challenge and on-going balancing act. Raynaud’s is very limiting as well. In the past year the amount of pain in my life has been reduced dramatically because I have been using laser therapy (theralase.com) to heal problematic finger ulcers. I also love my re-chargeable battery operated heated gloves and heated fleece jacket. Despite the challenges of living with a chronic condition, 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. I am a singer-songwriter recording artist. 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
Nicole's YouTube video HERE