Faces of Hope
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.
In 1992, I noticed that my thumb had gone white and consulted with my family doctor. She referred me to a specialist who diagnosed me with Raynaud’s Syndrome. “What is it?” A simple explanation is that the small blood vessels go “spastic”, severely restricting blood flow, therefore cooling and limiting the oxygen to the affected areas.
Raynaud’s attacks cause my hands to turn white, purple, blue and then pink. The condition is most obvious at the extremities, fingers and toes, but also affects other parts of the body. 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 shorten the episodes and maintain blood flow to my extremities. Always in the back of my mind is “will I lose my fingertips or worse?”
In 1997, I consulted a rheumatologist due to the constant swelling of my hands and shiny thick skin. During the visit, I’m told “You have scleroderma…thick skin … hardness around the organs… 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 my husband and I searched scleroderma on the internet. The information about the disease was scary and depressing. About that time there was a movie about Bob Saget’s sister who had scleroderma and died consequently. That was the image people saw when I told them about my diagnosis.
Over the years, I have seen my body change; tightening skin and swelling of my hands are causing my fingers to permanently curl, digit ulcers; 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 and it reduce my breathing capacity.
I have spent many years trying alternative health care options, continuing exercise programs and staying positive. Like most people with these diseases, taking medication becomes a big part of our lives. The good news is that with my regime of drugs, I can live with the day to day pain.
Since 2016, I have lived with rheumatoid arthritis, curled fingers, restricted movement in my wrists, severe calcinoses and Sjogren’s.
In 2018, I had Interstitial Lung Disease added to the list! 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.
In 2019, I am happy to report, nothing has changed.
People always ask me how I am 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!”
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!