Scleroderma – Living with a disease that has no cure
By Rosanne Queen
2018 update: Nothing like starting 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 scaring 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 but the good news is with the regime of drugs, the pain is now manageable. Still haven’t mastered grasping something in my palm or an easy way to grip a glass of wine! Can’t anything ever by simple with Scleroderma!
I’m every 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!
Like many diseases, I'm not fine one day and sick the next. Cold hands are a regular occurrence; "cold hands – warm heart". It was in 1992, while downhill skiing, I noticed that my thumb had gone white. Concerned about potential frost bite I consulted with my family doctor, who referred me to a specialist and 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, they 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 leadme 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 start onour "bucket list" rather than wait 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 and locally. We are alwaysthinking 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
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
When Scleroderma Entered My Life
The human body has always fascinated me. Having grown up as a dancer I have expressed a keen interest for the way bodies move, grow, develop, and function. For 15 years I spent most of my week nights in dance studios developing a career as a pre-professional dancer/ teacher/ choreographer. Scleroderma had different plans for me. It crept into my hands at 19 years old and I was awoken by the harsh reality that my dreams for a performance career were no longer realistic.
My capacity for challenging and complex movements had been quickly and drastically limited. Considering a personal history of hip pain and a family history of rheumatoid arthritis (RA), the first few doctors who tried to diagnose my condition concluded RA was the probable culprit. We began experimenting with treatments but my hands continued to be tight, tired, swollen, discolored, disabled, and 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 take a couple more years of struggling to find doctors willing to work with me and for me.
No longer able to perform, choreograph or teach dance as a full-time career, I chose to pursue an undergraduate degree in kinesiology. While beginning my university studies, I had also begun to establish a supportive 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 access to treatment, pulled my focus to the bigger question of what ‘wellbeing’ really encompassed. This led me to the completion of a Bachelor’s degree in Health Sciences at Simon Fraser University with a minor in Political Sciences in 2016. Had I not found professionals willing to hear my perspective, and occasionally offer discounted rates, my journey to personal well-being would not have been possible. Worse, I would have struggled to complete my undergraduate degree; an achievement that shouldn’t be prevented by a challenging body.
Directing My Desire to Do Something About It
Through both my experiences with Scleroderma and my post-secondary education, I have come to recognize the need for inclusion of pro-active and preventative health practices in B.C.’s health care system. This system is narrowly driven on a bio-medical model that emphasizes reactionary care. Because of this, people living with chronic diseases are often limited to treating a lifetime of symptoms instead of having access to the resources required for improving their quality of life. As a non-profit organization, the Scleroderma Association of B.C. is making progress where the system has left a gap.
Since discovering the Scleroderma Association of B.C. my quality of life has greatly improved. I have met other people with the same rare disease I live with and am grateful to have found community. I have witnessed the power of this collective to accomplish amazing things together. We have been supporting local research on new diagnostics and treatment options, raised awareness within our communities, cities and province, and share useful information about life-style practices with patients and their families that assist in improving well-being. Most importantly, there is a constantly growing network of support for those of us who are affected by this intimidating autoimmune disease.
Although I may never dance in the capacity I was once able to, I chose to not let scleroderma control my life. Scleroderma is a part of me, but I am not my scleroderma. It does not define who I am, but it does contribute to the perspective from which I see the world and function within it. I still dance to the beat of my own drum. I view my perseverance with this disease as a strength and I intend to continue harnessing my experiences to bring social awareness, justice, and support to the rare disease and disability community. While I contemplate the next direction to take my career, I will continue to contribute what I can to the efforts made by the Scleroderma Association of British Columbia, because we need it more than it needs me.