Last night I attended my first sarc support group meeting at Mount Sinai in NYC. I almost didn't go because it's a struggle to go anywhere (I live in NJ and it took over an hour to get there) with my dyspnea and pulmonary hypertension. I have to stop and take a rest every 20-30 feet, feeling out of breath, heart racing.
My wife insisted I go. She said it would be good for me to meet others better and worse off than me and to have others to relate to.
I had no expectations. I didn't think many people would show up. I was wrong. Almost 30 people were there and my wife was right. There were many much worse off than me, and the evils of prednisone were discussed at length. Plus, Dr. Tierstein, my pulmonary doc, attends every meeting and the 2nd half is his medical perspective after about 45 minutes of sharing.
It was a wonderful experience, much like this message board, but in real time with a whole lot of folks around to empathize with. I was near tears a few times, listening to others' ordeals.
One woman has been off prednisone since April and lost 55 lbs. Her 19 year old son was there and told everyone how crazy his mom acted at times. It brought back a flood of memories about my own experiences.
Point is, if there's a local sarc support group near you, by all means, go. If there isn't, try to form one through this board. The NYC group meets every 2 months. It was comforting to attend and I recommend it for all of you out there.
In the meantime, my prayers go out to all of you.
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