Thank you for visiting!

Thank you for visiting!

Monday, January 24, 2011

Maybe not?

Hi all,

Been a bit crazy around here these last couple of months. I've been working a lot with HAS ( and started doing some consulting with OHAC ( Add the pup, the son who moved back in with us Dec. 1st, two out of town trips, and time spent on a couple of other volunteer commitments and the sum is a crazy (and very tired) Trish. Oh yes, the narcoleptic husband who SNORES very LOUDLY doesn't help ;o) 

A confession about that last bit: there have been many nights when, somewhere around 3 a.m., my pillow has started looking more like a great tool for smothering my Sweetie than for resting my head. No, I'm not going to act on that urge, but I sure do hope he gets his C-pap fixed soon. Or I find some suitably comfortable ear plugs.

I don't mean to complain, just wanted to explain why my posts have been so infrequent, especially of late.

So... in case you've forgotten, let's set the stage: last time we checked in, I shared my optimism about our successful handling our November trip to California. Matt actually managed to make it through the entire Thanksgiving dinner with kids, grands and dad. I thought that, just perhaps, we might finally be figuring out how to live, in public and with family, with this disease.

Wishful thinking, it turns out. The last month and a half have been pretty bad for Matt. I have worried quite a bit that he might need to tweak his meds again. It turns out that he has been worrying about something I hadn't even allowed myself to consider: perhaps he hasn't hit the bottom quite yet. He might actually still be getting worse.

Stay tuned; more later. And this isn't necessarily bad news: more data means more information, and more information brings us closer to more effective treatment. And maybe, eventually, if we are very fortunate: a cure.

But for now, rest assured in knowing that we are OK. We will continue to be OK, and we will continue to be together. This thing is not going to beat us.

Hmmm, I take it back. We are BETTER than OK!