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Off to HPS Central!

The fried chicken had its revenge. I guess it wasn’t meant to be. I was terribly sick to my stomach all night after my Cajun food tantrum, but by the next morning was feeling better, albeit tired. Despite puking up the dinner, I bet I retained every last calorie! UUGGHH! Last night’s Mexican splurge went off without a hitch, so I guess I don’t have the flu. And, I’ve now been on the full dose of Pirfenidone/placebo for a week. I feel really great this morning, so all is well.

I’m leaving shortly for the Hermansky-Pudlak Syndrome board meeting in New York. You’d think by all my fretting this morning I never travel. I always get nervous right before a trip – but isn’t a fear of flying or being away from home. Nope, my travel stressers are a bit more rooted in practical reality.

First, I had to change my ostomy this morning. It’s been well behaved recently, and the skin is looking great, but then again, if it’s going to leak it usually doesn’t until a few hours after changing it. So, that would be about the time I’m on my flight. I’ve changed my ostomy in an airliner bathroom before, and it’s an acrobatic feat I don’t care to ever repeat!

And then there’s the cab issue – will the cab show up on time? The cab company insisted I didn’t need to go to the airport so early – they’d be on time. I’m still nervous and wish that instead of thinking I was a neurotic mess they just would have arrived at the time I requested. I don’t mind getting to the airport super early. At least I know I’m there, rather than having a stroke on the highway somewhere because the cab was late and I’m pushing it. I also always get stuck at security – every time – because my ostomy supplies and CPAP machine always create suspicion.

Then, I worry about what important item I stupidly left behind because I was packing while doing three other things at once.

I will try to post while I’m away, but not sure how much time I’ll have for such things. Donna and I don’t want to waste a single working moment while I’m actually in the Network office.

In the meantime, please pray for my HPS friend Candice and her family. Candice has liver cancer and it has reoccurred. Your prayers would mean a lot to her and her family. Candice and her sister Crystal have a new blog. Check it out at
www.angelsinvoice.com.

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