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Wednesday, July 11, 2012
Last week I was at the Children With Diabetes’ Friends For Life conference in Orlando. Well, first of all, Orlando in July is sooo not fun with the heat and humidity, which is evidence by itself of how important I think that conference is! It’s been a while since I went to FFL and I was reminded over and over that it’s always important to do a refresher on “the basics.” The first reminder of this came when I did some interactive sessions with kids along with my buddy, Sebastien Sasseville (who has climbed Mt. Everest). The second reminder came when I had a very brief minute to chat with Diabetes Research Institute’s Tom Karlya, who also happens to be one of the nicest guys in the world. The third reminder came when I spent an evening hanging out with Steve Edelman, of Take Control of Your Diabetes, and caught up on lots of stuff and laughed til my face hurt! I love Steve! And, finally, I was reminded of this again when I joined a panel for parents to “Ask the Athletes.”
True to my usual style, I arrived and had to go straight to some sessions with kids, luggage still in tow because I didn’t even have time to check into my room. Sebastien had the kids started and I hit the ground running … literally. The questions that came up with each group that we worked with dealt with such basic concerns … these were kids after all, but I was still struck by how much I had forgotten about the fear of low blood sugars during exercise and about the logistical problems of carrying something to eat (and knowing when to eat it). One young guy wanted help figuring out how he could start playing soccer with his blood sugar close to normal and not have to ask the coach to take him out when it started to drop because he was afraid he wouldn’t get to go back in. A girl asked Sebastien how he knew when to eat something if he couldn’t use his meter. Where do you keep your meter, insulin, carb gels? What if the referee says you can’t have your pump on the field? How far can you run before your blood sugar will drop? And, the questions went on. Of course, the kids asked some cool questions, too: What was it like to stand on the line at Olympic Trials? How fast (and how far) can you run? Was it cold on top of Mt. Everest? How long did it take to climb Mt. Everest? It was a whirlwind of sessions, moving from one group to the next.
Later that afternoon, I had the pleasure of running into Tom Karlya. Tom’s daughter was diagnosed with Type 1 diabetes as a child and it completely turned their lives upside down. Ever since, he has dedicated his life to helping find a cure and he is “in it to the end.” Tom is tireless in his efforts and, somehow, he always remains so upbeat. He is a welcome sight at a busy place like FFL. As I tried to gulp down some food standing in a lobby area, I mentioned to Tom that DRI is so important because even though we need new technologies to improve how we live WITH diabetes, DRI is my only hope to live WITHOUT it. I’ve said that to various people many times … and I mean it. Tom looked at me, though, and said quietly, “Missy that’s a very powerful statement.” And, it made me think. Yes, it is a powerful statement and it’s a statement that should be history, not current sentiment.
I capped off the late afternoon going for a run with Sebastien, who unfortunately had to get in a long run in Orlando … in the hot and muggy afternoon … because he had to fly to France the next day. I had done my long run early, early, early the day before and really didn’t plan to run in the Florida heat and humidity at 5 in the afternoon, but Sebastien is my buddy and my teammate, so we do what we have to do for, I guess, family. I ran about 75 minutes with Seb. We talked about the kids’ sessions and both felt like we had been reminded not to take for granted all that we have learned about managing our lives around diabetes.
I took a quick shower and headed down to get some dinner and ran into Steve Edelman. Steve always has the most novel ideas about managing diabetes. He was the person who taught me the strategy of using Lantus as a basal insulin and programming my pump around its action. I know so many people who use that strategy now, but it seemed like rocket science to me at the time. A few of us ditched the dinner and went to hang out in the lobby bar where it was less crowded and less noisy. In his usual style, Steve started hounding me about not using a Dexcom … or any continuous glucose monitor. What are you trying to see how long you can practice stone-age diabetes management???? I played around with Steve’s Dexcom for a while and I have to admit, it was pretty cool. It was a lot smaller than I had thought it would be. So, then the running joke, every time I saw him, anywhere, was “what’s your blood sugar? oh, let me see, mine is …” Ha ha.
My next reminder of the importance of basics came with the Ask the Athlete panel on Friday. The questions that parents asked reminded me of how I had also wanted tangible answers to very basic questions when I was first diagnosed. How long after I take insulin should I wait to run? What do I eat before I run? How high should my blood sugar be? What do I use if my blood sugar starts to drop while running? How do I carry stuff with me? What do I do after I finish? It hit me that it wasn’t good enough to answer with the vague and general, well it depends …. So, I gave some very specific answers. If I run in the morning, I eat half of a bagel with butter and take one unit of Regular insulin along with the normal 7 units of Lantus. If I run in the afternoon, I make sure that I am at least 2 hours out from my last shot of insulin and I eat an energy bar that has a combination of protein and carbohydrate, like a MetRx Big 100 bar (which will last for an hour or more of running). After the panel, over the course of that afternoon, I had at least 20 people thank me for giving such specific answers because they said it gave them somewhere to start. If they had a starting point, they knew how to make adjustments based on how things worked, but it was scary not to know where to begin. Amen!
Well, Orlando was a whirlwind. And, it was hot and muggy. And, I don’t really like traveling much. And, I’m so behind on work. But, it was worth it. I was reminded of the basic struggle I deal with, of all the others who deal with the same thing, and of how important it is to be a source of information and, hopefully, a little bit of inspiration … hopefully.