Starting to Get Excited

We leave tomorrow for Vegas for 4 days. Really two, but who’s pissed about it? Ok, I am. No other choice, but still pissy about it. Monday I have to work from 2am -10:30, so we missed the morning flights. Only other ones are after 6pm. So we get there at 9 and ? Won’t we be tired? I know I will be. And then we fly back Thursday morning at 10am, so that’s not a day to count either. So we have Tuesday and Wednesday. Probably be ready to kill each other soon in to Tuesday.

Really sucks that we won’t have as much cash to take as we thought. And we really aren’t taking much to begin with. But of course, cars will break down. They need tires and windshields and batteries and that’s all in one week. I laugh so I don’t bawl. BUT – we still have some, and should be enough to gamble a little.

My uncle died. I liked him a lot. He stepped in when Dad died and helped my mom tremendously. He had trouble with his memory a few weeks ago, so they starting running tests, found an inop brain tumor, and he died Tuesday. They were planning a trip. He didn’t expect to die this week.

Scared me again. I’m not scared of dying itself. I’m scared of not living. I don’t want my kids to have to dig through my clothes and shit or have them find My Drawer Full of Female Goodies. I do have letters in my underwear drawer for everyone. I need to update them. I also have a file entitled – Things to Do In Case Angie Dies. It covers mostly online shit. This blog, my FB groups, user names, passwords, etc. But there will always be more to tell everyone. Few people are 100% prepared to die. But with no warning? I don’t dig that. Not at all. Of course, the long progression into’s I’s disease means that we get to pre-mourn for years. It’s always there. Waiting. Fucking waiting. It’s just as strong as grief felt after someone’s passing. I am heartbroken about I just as much as I was/am about my dad’s passing. It’s devastating. I can only imagine what the grief morphs into when the time comes. Nothing good. We’ve been this way – living on a tightrope between sanity and the fucking funny farm – for almost 9 years now. Not sure how much longer we will have – but I hope it’s a long long long time. I hope this exon skipping drug for his type of Duchenne works AND the FDA approves it. That’s pretty much our only shot. Nothing else is really recruiting for anything “major”. Heart and Lung trials – which excludes entry into the more important studies. THen again, his heart is starting to enlarge, and his pulmonary scores are starting to decline. He’s leaving his hooneymoon phase and starting to really progress into the active window for Duchenne.

And there isn’t a fucking thing anyone can do about it.

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