My story of being a hypochondriac, an MS patient, and a guinea pig. NOTE: After 16 years on Fingolimod, I'm starting my self-designed study to taper off the drug while avoiding the now well-documented "rebound relapse" phenomenon. I'll be writing about my journey on SubStack and you can find it here: https://farewellfingolimod.substack.com/
Monday, November 14, 2011
The weekend of a lifetime!
What an amazing time I had in St. Louis. Loved seeing the sights and meeting so many inspiring, wonderful people. You know who you are. If you are here reading this and you were in St. Louis this weekend, YOU are the wonderful, amazing, inspirational, uplifting person I am talking about. ALL of you.
I'm too completely exhausted both physically and emotionally to say anything more tonight, and I promised there were certain things I wouldn't blog about, but there are tons of anecdotal insights I'd like to share. Nothing that will infringe on stuff that's not to be shared though. :)
Anyhow, if you were in St. Louis and would like to stay in touch, be sure to leave a comment on this post with a way to contact you. I neglected to get about 1/2 of your phone numbers and was disappointed to see that certain folks weren't in there. If you do leave a comment rest assured I will not publish them and I will respond via email.
It was just too great an experience not to keep in touch.
And if you weren't there and you have no idea what I am talking about, I think it's safe to say we were all a group of patients attending training to become patient speakers for Gilenya. Sorry, but I'm not going to go into detail about what that entailed but I may touch base on some funny tidbits to share with you of my travels.
I'll leave you with one.
Friday, 11/11/11, was the first time in roughly 30 years that I flew. The second leg of the trip was from Atlanta to St. Louis. I had a center seat with two big burly guys on either side. The guy on my left was reading Hemingway's "For Whom The Bell Tolls" and was a couple dozen pages from the end.
The guy on my right was fidgety and listening to his ipod and wearing corduroy pants.
It was all I could do not to lean to my left and say "It tolls for thee," or lean to my right and ask "are you wearing those in honor of 11/11/11?"
Ok, maybe not the greatest jokes, but I was paralyzed with fear so forgive me. When we touched down and bounced a little, I was muffling a scream. The book reader guy was yawning and I said "REALLY?? You're yawning and I'm trying not to scream???" And he just chuckled.
On the way home, somewhere between Atlanta and Jacksonville, I found myself either relaxed enough or exhausted enough to finally yawn a few times myself.
And with that I leave you. I'm going to go hibernate for about a week. And think about all the fun we had.
Subscribe to:
Post Comments (Atom)
No comments:
Post a Comment
Note: Only a member of this blog may post a comment.