THE ODDS (Debbie Does ALS)


10.19.2008

So much to say, so little time...

It's been a hell of a weekend. Meltdowns, threats, support groups...I just want to crawl in between my sheets and sleep for a hundred years.

Okay, the meltdowns were hinted at yesterday. I'm usually the dumping point when she has them because she knows she can dump and I will still love her. She was in rare form yesterday, however, and I crumpled. She threw out things like "since the diagnosis what's the point in living" and "just kill me" and "I'm having suicidal thoughts" and "we have lots of knives." How am I supposed to stay calm and steady in the face of this? I know 99% of what's said is the Aspergers Monster and is totally meaningless, but it's been said and I have to respond. That said, Kate is getting a call tomorrow. It's been too long since our last visit and we need to get back on track.

Today's support group was really interesting. I almost didn't go because I was solo and because of the meltdowns, but I'm glad I went. The guest speaker gave a presentation on home modifications which I found encouraging. I'm confident I'll not need any modifications for a long time IF EVER but, if I do and the housing market still sucks, I think I can make some changes here that will be suitable.

I also met a nice couple I hadn't seen there before. I didn't catch his name, but her name was Agnes. They asked me if I'd tried acupuncture, I said no, because I wasn't convinced it would help. Mr. Agnes was arm onset and had his first symptoms 10--10--years ago. He wasn't able to raise his arm. He also couldn't speak. He can do both now and he believes much of this is attributable to his regular acupuncture. That's all I needed to hear, I got his therapist's card and am calling tomorrow. Why not? Right?

Let's see. What else. Oh, yes. This morning we ran and were met several times on the course by Pete Cihelka, the FLS photographer. The FLS reporter, Cathy Dyson, interviewed me Wednesday night and sent Pete out to get some photos during this morning's run. This is another piece of the marathon package, since I'm such an interesting human (haha!). It was a great day for running--40's and breezy--and I'm hoping he got some good shots. Lynne, Nell and Janice were with me, which made it better.

So, now it's Sunday night. C Claire is better, I'm better, and it's time to crawl between those sheets.

Good night, good night! as sweet repose and rest come to thy heart....

(I'm such a goof.)

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