Stories

Scleroderma – Living with a disease that has no cure
By Rosanne Queen

2017 update

With Scleroderma, I never know what to expect next.

In the last 6 months, my hands have curled, I have very little movement in my wrists and I am in constant pain.  Do you know how hard it is to grasp something in the palm of your hand when you can’t make a fist?  Gripping a wine glass or taking change at the checkout is awkward.  I have some markers for rheumatoid arthritis but due to Scleroderma it presents itself as inflammatory arthritis.  Can’t anything ever by simple with Scleroderma! 

I’m presently trying a regime of drugs and waiting patiently so that life will return to normal.  I have a lot of respect for those living with chronic pain, as it really does affect you physically and mentally.  I’m still greatful 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!

 

2016

Every day is a personal challenge for me to overcome the physical restrictions, discomfort and pain of living with a disease that is not visible to most, known by even less and which has no known cure. I'm constantly reminded I have Scleroderma because I'm always cold, my hands and feet are in "Raynaud's mode" and my hands swell painfully, I have limited dexterity and calcium deposits on my fingers and experience regular, severe acid reflux.

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

The human body has always fascinated me. Having grown up as a dancer I have carried an intense interest for the way we move, grow, develop, and function. As a teenager I spent most of my week nights in a dance studio and the passion I had for connecting with an audience through my body continued to flourish as I pursued dancing pre-professionally as an adult. At 19 years old I awoke one cold morning to what would become the harsh reality that my dream career as a dancer, choreographer, and teacher would be short lived. Tight, tired, swollen, and discolored hands and feet, beyond any discomfort I had ever experienced before, overwhelmed and limited my capacity for complex and challenging movement. The first few doctors who tried to diagnose my condition considered my history of hip and joint pain (mostly caused by dancing and running long distances) and began experimenting with treatments for rheumatoid arthritis. After a few years of struggling to develop an effective treatment plan I was finally given the diagnosis of scleroderma and the symptoms I had been experiencing in my extremities were accurately classified as Raynaud’s Syndrome.

Through the process of diagnosis, my interest in the human form expanded deep into the realms of physiology. I found myself wanting to know everything I could possibly learn about pathology and rehabilitation so I chose to study kinesiology at the College of the Rockies in Cranbrook BC. The science and theory of our existence grasped my attention but my frustrations navigating the health care system and the impact of social inequalities on access to treatment pulled my focus to the bigger question of what ‘wellbeing’ really encompassed. Struggling to find an effective treatment through the bio-medical model that the system is dependent on led me to consider less conventional practices. I developed open dialogue with health practitioners who incorporated a holistic and proactive approach to preventing the progression of my scleroderma. After four years of perseverance I had accumulated a team of health practitioners in my community that were willing to advocate on my behalf and empowered me with a multidisciplinary ‘tool kit’ to manage my disease.

Through adapting my life style and finding a specialist who was willing to oversee my experimental journey, my body was able to start healing. I had finally found a medication that worked! It was a breakthrough that brought me inspiration and I am forever grateful to everyone who supported me through the long process. Although dancing in the capacity I once enjoyed was no longer possible I chose to not let my scleroderma stop me from enjoying a physically active life. I continued to teach and choreograph throughout my college years and dug into my love for the outdoors through hiking, long distance running, and mountain biking. Most importantly I realized that my recovery was something that required more than just medication and I wanted nothing more than to make wellbeing a possibility for everyone; whether it was scleroderma or any other health challenge they faced.

Three years into my undergraduate degree in Kinesiology I made the bold decision to change directions and study Life Sciences through the faculty of Health Sciences at Simon Fraser University. This satisfied my yearning to gain new perspective and develop a bigger picture of the factors that contribute to creating the conditions for health. The one factor that stood out as the limiting reagent was politics and so I extended my degree to encompass a minor in political science. My experience with scleroderma has not been without struggles but it has become a part of my perspective and I view it as a strength that I intend to use to contribute to public health policy reform as I move forward along my career path.

 

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