Sunday, August 23, 2009

Big Plans

I've been moping a bit, and I can't stand that. The self-pity thing disgusts me, and I can't have it. I have to find a way to stay positive, and when you've hit the end of the medicine road with IIH and you've still got headaches, it gets tough. So what's a girl to do?

She looks to the Zen of the best Puppet Show on Earth: Avenue Q: The Money Song

The more you give. The more you get. That’s being alive!
All I’m asking you Is to do what Jesus Christ would do.
He’d give me a quarter,Why don’t you?

I feel generous! I feel compassionate!

You do?

Yeah! I feel like a new person - a good person!
Helping other people out makes you feel fantastic!

That’s what I’ve been trying to tell you-

All this time I’ve been running around thinking about me, me, me - and where has it gotten me! I’m gonna do something for someone else!

And so here I am, looking to puppets to help me find my philosophy yet again. But it's a good one. Betsy saw the IHRF video I posted on facebook and offered to help me organize a fundraiser. That struck a real chord. It was the right offer at the right time. Now I have a path... something to work for. Doc says he doesn't have a cure for me... okay, then I'll work to get everyone one. I'll get my friends and family involved, raise awareness, and do some good in the world. It will be good. I have some good ideas.

I've also got some ideas for the foundation in general. I learned this week that cystic fibrosis is also a rare disease (rare is defined by number of diagnosed patients). But, most Americans don't think of it as rare because most have heard of it before. That's because the cystic fibrosis people have been good at awareness and advocacy. Awareness = political clout = money = research. I also think the foundation needs ambassadors across the country. Help with answering questions, referring to neurologists, answering questions for family, making phone calls to hospital administrators and patient advocates. (Many IIH patients get called drug seekers in ERs because pain meds don't touch the pain... that label is hard to shake). Anyway... there's a lot to be done. Gotta start somewhere.

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