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November 2006

Tuesday, November 14, 2006

Today we returned home from the American College of Rheumatology’s annual scientific meeting. This year it was held in Washington, D.C., which was a pretty interesting place to hold a conference. There was a certain celebratory current running throughout the city as the Democrats had recently reclaimed partial control of the city and their spirits were quite high. I also had a chance to see an old friend, Sean, which made the trip to DC more fun than work.

Though this year’s ACR meeting felt quite subdued. I think there was a lack of groundbreaking evidence about any one particular treatment, but that didn’t prevent optimism from remaining a dominant theme. All of the pharmaceutical companies presented new data which seemed very promising, and all of the research scientists proudly displayed their findings. And the physicians attending, well, they remained jolly, friendly, and happy to be there. The same faces of the same thousands of doctors from all around the world – we have gotten to know quite a few of them – keep returning to these conferences. These doctors are great and I’ve gotten quite close with a lot of them. They’ve welcomed us into their scientific and clinical communities and in return we have pledged to continue to support their work with our messages and mission.

I think the best part of our trip down to the ACR this year was the advocacy reception held by Genentech last night. They did something amazing: they brought together representatives of their scientific community – medical officers, scientists, etc. – and the heads of the various advocacy groups they support, for a little reception. And, for the first time, the people on the front lines of the scientific research got to meet the people on the front lines of the advocacy and support communities. It was spectacular. We, as in the communities, advocacy groups, and everyday people who wake up in the morning to help other people with these diseases, had a chance to thank them, the elite group of men and women pioneering the research, treatments and cures for these diseases. It really was unique. Kind of a ‘worlds colliding’ situation that doesn’t happen often but, when it does, you sure know something exciting is happening.

And next year I return back to Boston, a wee bit wiser, for the 2007 conference.

Tuesday, November 28, 2006

The crazy part about a bad flare is that it can just appear one morning, unannounced, and make your life miserable. So you adjust, you adapt, you whine a little, and then, without warning, it goes away. If you’re lucky it’ll last a day or two. If not, it can go indefinitely. But you try to tell yourself that it’ll go away in the morning, you ice or heat the problem, maybe take some extra medicine, and try your best to ignore it. But when you have a flare, my goodness…the last thing you can do is ignore it.

This happened to me last week, unfortunately, but I’m lucky in the sense that it didn’t stick around for too long. For about four days I had such bad pain in my hands I was amazed at how much it limited me. This was definitely the worst it has ever been…forget about jars and cans, I was having trouble with doorknobs and buttons. Needless to say, I wasn’t very happy.

Which, mind you, wasn’t the end of the world. I mean I kept doors open, I wore shirts with snaps and not buttons (arthritis single-handedly is going to bring back the snaps, baby!), and I kept my mouth shut. Because all I could think about is how much it would suck if this is how things were all the time. I wouldn’t be able to write this, or anything for that matter. And I’d be in a much worse mood.

So I’m back in the saddle now. Thanksgiving came and went, the family was great, and I even had a chance to visit the Heartland of America over the weekend. It’s a good thing I was feeling better…it’s an awfully big place to wander around with joints that hurt.