Love to Learn, Learn to Love.

Lesson #8 : Scleroderma

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In October 2008, I was officially diagnosed with Scleroderma, an auto-immune, rheumatological disease which has resulted in deformed hands (see photo below) as well as in significant pain. The cause of this disease is not yet known and hence there is no cure.

About two years prior to diagnosis, I noticed that my legs were stiff after I played golf. This happened on a number of occasions so I simply stretched out my legs and didn’t think any more about it. Little did I know at the time, but my disease (literally “thick skin” from the Greek) was then at the onset stage. My rheumatologist has told me that even if I had been diagnosed at this point rather than two years later, they could not have prevented the disease from running its course. Maybe he is just saying that to make me feel better but, as they say, it is what it is.

Then in May of 2008, I started noticing that my fingers were swollen when I woke up in the morning or following my daily constitutionals. One morning, in October, I woke up and lo and behold, my hands were pretty much like they are today (see photo). I immediately dropped in to visit my friend and physiotherapist, Julie, who works for the Centre de Readaptation Constance Lethbridge, a remarkable facility in NDG, and she immediately diagnosed me. “Looks like Scleroderma “, was what she said on that fateful morning.

This disease thickens the skin, including internally so every year I go for tests where my lungs and heart are checked. So far so good in that sphere except for the fact that I was felled by a serious case of pneumonia which put me in the Jewish General Hospital in Montreal for three months beginning in May of last year, 2012. Included in my stay in hospital was three-week stint in the I.C.U. I was intubated, couldn’t speak nor eat. A horrible experience and one that was caused by one of the drugs I took to fight my Scleroderma – methotrexate – which slowed my immune system down and in so doing increased my susceptibility to viruses like pneumonia. Fortunately my disease stabilised during my hospital stay so no more of that killer drug for me. It’s a good thing that I didn’t remember, while in hospital, that Scleroderma brings on pneumonia which is what has killed some of us afflicted with this disease. I remember meeting a woman who had led a Scleroderma Support Group in Khanawake. When I found out that she was no longer doing this I asked her why not. “Because they all died” was her most encouraging answer! She also told me that in most of the Scleroderma-caused fatalities on the Rez, pneumonia was the killer.

Like most laymen (as opposed to those in the medical profession) out there, I had never heard of Scleroderma until I was lucky enough to contract it. It strikes one in a thousand people, eighty percent of whom are female. However, it is more fatal among males and did, in fact, force me to retire from teaching which I really love. It is said that if we Scleroderma sufferers make it to year eleven with the disease, then we are pretty well out of the woods as far as death is concerned; I’ve had it for almost five years now and will mark my five year anniversary next month.

As a result of the pain caused by Scleroderma, I take painkillers including Oxycodone (Supeudol), Fentanyl, and medicinal pot. Since I can no longer smoke as a result of having had pneumonia, I drink at least one cup of pot tea a day and I can honestly say that it works in serving as a distraction as well as providing me with a nice buzz.

Tomorrow: The ins and outs of medicinal weed and Scleroderma. Looking forward to it and hope you are too.

2 Comments

  • Radio says:

    Thank you for sharing your story and keeping it so real. This juicy lesson makes me realize how easy it is to get caught up in day to day nonsense, emotional ups and downs and petty annoyances. It’s easy to get caught up and lose perspective on life. We forget to just be grateful for our health and the well being of our loved ones. Each day is precious…
    I’m sorry that you had to give up teaching because of this disease! You are an amazing and unforgettable teacher! Stay strong and keep the lessons coming!

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