Faces of hope

Rosanne’s story – Living with a disease that has no cure!

Every day I’m reminded that I have Scleroderma, Raynaud’s, Rheumatoid Arthritis, Sjogren’s and Interstitial Lung Disease. 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 start on our “bucket list” immediately rather than wait 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 all need to keep healthy and participate in life. That I am still able to ride our tandem, now with a motor, and see the world, while getting in the ever-important exercise for my overall health, demonstrates 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).

I’d like to share my health journey with you.

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 very 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. Winter & summer, I wear a merino undershirt. While watching TV, I use heating pads for my feet and hands 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. For many years, I was on Viagra, yes Viagra, to shorten the Raynaud episodes and maintain blood flow to my extremities. Always in the back of my mind is “will I lose my fingertips or worse?” Now, I’m on a higher dose of Adcirca, similar to the “viagra” and it appears to be helping a little.

In 1997, I consulted a rheumatologist due to the constant swelling of my hands and shiny thick skin. During the visit, I was 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. Everyone around me had seen the movie “About Hope” about Bob Saget’s sister who had scleroderma and consequently died. That was the image people saw when I told them about my diagnosis. This was a really low point in my life but I wasn’t ready to give up!

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 and calcinosis. It’s difficult to grasp an object in my palm and there is no easy way to hold a wine glass! For many years, my face was so tight it restricted me from opening my mouth very wide but over time, it has gotten a bit better. I still need to cut my food into very small pieces because of the reduced elasticity of my esophagus which makes it more difficult to swallow. Like most of us with Scleroderma, I have severe acid reflux.

I have tried quite a number of alternative health care options since I was diagnosed. Some helped and some did not. I continue to exercise and most importantly I work very hard on staying positive. The power of a positive attitude and mind can’t be underestimated!

Medication is also a big part of my life as it is with so many others who suffer from Scleroderma. The good news is that with my regime of drugs, I can live with the day-to-day pain and still maintain my quality of life. So, when people ask me how I’m doing, my response is always “LIFE IS GOOD!”