Monday, April 27, 2009

Spring Meeting

The London Group of the SSO had their spring meeting this past Saturday.  There were approximately 18 people in attendance including a couple of new members which was encouraging.  

Our speaker was Sally Bell, B SC. Pharm., Rheumatology Pharmacist, St Joseph's Hospital.  Sally gave a very informative talk on the various pharmaceuticals used in the treatment of Raynaud's and GERT, two of the more common manifestations occurring in scleroderma patients.  

I learned a lot but a couple of things stick out in my mind,  both of which might be helpful to readers of this blog so I'll share them.  The first concerns diet which is an important factor in conjunction with medications for controlling reflux.  The fact that surprised me though is that high fibre diets, something we hear about frequently these days, is not always a good idea for scleroderma patients, in fact it can be counter productive.  I did a little research and there is some evidence that a high fibre diet in patients with scleroderma can actually cause severe constipation or bowel obstruction.  So beware.

Another interesting discussion centred around calcinosis.  Someone brought up using salt water to ease the skin  eruptions which can accompany calcinosis and one of our members, Jill,  informed us that this has been very helpful in her case but that one should avoid using table salt containing iodine which can further irritate the area.  Instead, she recommends pickling salt which has no iodine.  She suggested using approximately one tablespoon of pickling salt per gallon of water.  So there you have it.

Our next meeting will be on September  26, 2009 at which time we will be hosting the AGM of the SSO.  Dr. Janet Pope will be our speaker.



 

Monday, April 13, 2009

The Next Step


In a previous post I talked about taking up guitar again even though my hands are unable to play in the normal way - all I can use are my two thumbs.  Well, yesterday, I took the next step.  I was at my daughter's for dinner and as we sat around chatting afterwards, two guys showed up with guitars.  The plan, apparently, was to get me into my son-in-law's studio for a jam.  Feeling somewhat nervous about playing with all these experienced musicians, there were four of them present, I made my way up the stairs to the studio where they set me up with my guitar and an amp and before I knew what was happening we were all making music together.

There were two acoustic guitars, an electric bass, a drummer and me on slide.   Well, I had the time of my life.  This was a first for me and something I'd always aspired to.  It's now more than 24 hours later and I'm still pumped about the whole experience.  The guys were very supportive and did everything they could to make up for my lack of confidence (and talent) with the result that I even surprised myself.  We must have played over a dozen songs and not only did I play accompaniment on all the songs but I took my turn soloing on every one of them.  

If someone had told me a year ago that this would be possible I never would have believed them.  In the eleven months since I bought my first lap steel, I have progressed far beyond where I was after 20 years of playing without any physical impairment. Instead of being a hindrance,  scleroderma has actually enabled me,  through the adjustments I made to my playing, virtually starting again from scratch, to surpass anything I thought was possible five years ago.  Obstacles can indeed be turned into opportunities for growth.  I have achieved a life long dream not despite of having scleroderma but because of it.  How's that for turning things around?

So what's  next?  I am now that much closer to working up the courage to play at the scleroderma concert in June.  Still not making any promises though.