Faces of hope
It seems like scleroderma has been a part of me my whole life. There are times when I can’t remember what life was like before scleroderma.
I had to give up my lunch hour walks. I had just started a new job in 1991 at a major law firm in Toronto. It was a dream job for me. I commuted by train and had a busy workday, but the best part of the day was my lunch hour walks in the city. I would walk rain or shine, hot or cold. Then one day my fingers turned black after coming back from my walk and my hip joints started to ache. I bought warmer gloves and new running shoes, but that didn’t help. These symptoms started a long series of tests and doctor visits. At first, I was scheduled for a carpal tunnel surgery, then finally referred to a doctor who said, ‘No, it is Raynaud’s.’ I had never heard of Raynaud’s Phenomenon, looked it up and thought, ‘I can deal with this, I’ll just wear warm mitts.’ Wrong! My hands puffed up like puff pastry making it hard to bend my fingers.
One cool Fall evening I was out walking my dog, wearing mitts, and caught frostbite on my index finger. It was the most severe pain I have ever experienced, and I was lucky I didn’t lose the finger. Now I have no feeling in that finger. A few years later I applied for a Nexus pass. When I went for the interview and fingerprint scan it was discovered I had no fingerprints on my right hand. Try explaining that to border security!
But I made the decision to get on with life and live it the best I could. I was still able to continue to work, travel and enjoy life. I bundled up, even on warm days, as I am always cold, I always had gloves handy in my purse for when I go into air-conditioned establishments. I always drove with the windows open instead of using air conditioning.
I have to stop and think now about what I can and cannot eat. Having severe acid reflux has really changed my life. As a child I had so many upset stomachs and days of just not feeling well. I sometimes sit back and reflect, ‘Did I have scleroderma even as a child?’. I love spicy food, tomato-based food, and a good vodka tonic. However, all these trigger a severe reaction. And no, I haven’t stopped eating those foods, I am my own worst enemy! But I did give up drinking as I would prefer to eat than drink!
I developed a cough in 2010. I went to my family doctor who performed a quick breathing test and I failed. She had no idea why as my lungs sounded clear. She referred me to a respirologist who walked into the waiting room, took one look at me and said, ‘You have scleroderma, you have no lips.’ I was astounded. First, that she would say that in a room full of people and secondly, what is scleroderma?
Then the fun began. I was referred to a scleroderma specialist in Hamilton. He was very blunt, told me I had lung scarring, should be on oxygen and had 5 years to live. I was in shock and denial. At that point I was breathing fine; it was just a cough! Like many of us, I went home and looked up scleroderma on the internet and thought, ‘Yup this is it, I’m dying.’ I asked to be referred to a doctor in Toronto. I was so thankful I did. I had two great doctors there who explained scleroderma to me. I was followed-up with them on a regular basis, had numerous tests and medications and things seemed to stabilize a little. However, my breathing did slowly get worse. Sadly in 2017 I decided I just couldn’t do the commute any longer, and the fatigue was bad, so I retired and moved to Vancouver Island.
I was referred to the Scleroderma Clinic at St. Paul’s Hospital. The last 2-3 years I have gone downhill quickly. I have severe pulmonary hypertension, interstitial lung disease, a non-working esophagus and the general aches, pains and fatigue of scleroderma. I came to the island with no doctor and now have 20! I am on home oxygen pretty much 24/7 now and take more pills than I care to mention. I’ve lost over 50 pounds.
In June I completed the testing, (wow, there are a LOT of tests), for a double lung transplant. I am a status 2 on the wait list. I’m told I have the best blood type for transplant so it could happen quickly. Fingers crossed that by the end of 2022, I will be breathing again. I know I will still have scleroderma after the transplant, and it will always be a part of me, but once I get my new lungs I am determined to not let scleroderma define me.
I still try my best to get out with friends, even though it is exhausting, because I need to get out and not let this disease own my life. I look forward to being able to walk my dogs, go shopping, travel and yes even vacuum! I have many goals for when I can breathe but the most exciting one is to be able to do the Scleroderma Walk in 2023.
See you all there!