Thursday, November 8, 2007

It wasn't ALL bad, though.

Well, of course it wasn't all bad. I mean, going to Florida from Illinois the first of November means good weather.

And I got to go with 3 of my most favorite people in the world. That would be The Man, #1, and #2. It's always a hoot to be in a hotel room for an extended period of time, that's for sure. The hotel was GORGEOUS (really sprawling, but pretty) and the pool(s) were well used by the heathens. #2 especially enjoyed watching his mom and his big brother freak out a little bit each time we went up and down the glass elevator! Oh, and they drooled when they saw the Nickelodeon hotel just across the highway from our resort!

The best part is being with "our people". People who don't ask about the medical bracelets, except to ask "A or B?" and "where ya from". They don't blink twice when I say "we'll be right back...gotta go poke." These folks delight in seeing the boys' favorite veins and we compliment each other on our "hoses" (great veins). We compare hematomas. We compare price per unit and lifetime caps. "Where do you get your factor" is just as common as "How's the weather". And god forbid you don't have an answer. We aren't afraid to bust out a hemo 101 lesson on the fly, either.

That's just how we roll.

I got to hang with my friend Becky. I just know that if we lived closer, our husband's would have a hard time getting us away from each other. It's amazing that I've know her longer than #2 has been alive! We met in New Orleans and have been in touch ever since. Her daughter has hemophilia....really, real hemophila not "just a carrier". (She's kinda famous that one). And we laugh about the knuckleheads out there all the time.

The boys got to hook up with T1 and T2 (the Tylers) and I got to see their parents. Just love Kim and Ron, Chris and Robin. I can't believe how fast our kids are growing. You go Chris and Robin, they're rockin' Alabama with a new chapter. And Nina? Dang if we aren't all proud of her girl for snaggin' the V.P. spot in their local chapter; I also think my boys thought her boy was a real, live rock star.

My old men...Carl, Wayne, Chad, Dan, Felix, Chris, Paul... I think of that line "Freedom's just another word for nothin' left to lose". These are men who embrace everyday just because they know the value of 24 hours. They are like stalwart war veterans. Survivors. They've lived a nightmare but they still work to make a difference in a community that some would say failed them horribly. Jeez. I don't know if I'd have 1/2 the strength of these guys.

I hope his knees didn't sign the divorce papers Carl sent them. And you'd never know that Wayne and Dan are bionic men, that's for sure.

Mostly I come away from a meeting like NHF knowing that there is so much work left to do. Medi-Gap, single source providers, PBMs, Lifetime caps, out of pocket max's, bankruptcy reform...just so much.

It's hard not to feel helpless and hopeless.

One thing that does give me hope is know that the leaders of our major advocacy groups are all Factor 9's. Man, that's like a grand slam in the bottom of the ninth (pun TOTALLY intended) with the bases loaded.

I'm your humble servant.

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