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25 November 2013

Got okay from hospice to go ahead with plan to stop eating and drinking. Wish me well. I have to go some way and I don't have control over anything else. 

12 November 2013

I broke out.
 *kisses the ground*
Can't stand never being alone!!!
Hate authority!!!
I liked the PT a lot but unfortunately the way the facility was run made things unscheduled with no inclusion of me in any info loop. Ideally I would've had PT first thing, then OT later, but the OT kept appearing and sucking up my energy (which has a rise and fall I can predict daily) and making me miss PT, which then got put off until some later time when my energy and abilities were very low. No schedule! Ridiculous!

My idea was to work very hard at PT to gain as much strength as possible, then do OT later in the day to work on core strength. The PT man I mostly had, as well as one OT man, thought that was fine, but the female OT did as she pleased. No schedule meant someone could turn up any time when I was wanting to go to the toilet, say, or doing jin shin, or feeling terrible (every afternoon my weakness/hot feeling increases). No schedule! I still can't believe it. 

I beat on them at first and got a few days with PT at 8, before the OT screwed it up. I got fed up and wanted to leave Saturday but they couldn't discharge me properly until today. In my view they helped me gain strength but now I need to be able to get up when I want to little by little. I had 18 days of being stuck barely allowed to move, so I need to take it slowly.

I hired a Kim to come in for two hours and my generous pal Lucia (the poet) is sending one of her caregivers for two hours a day. I had awesome friends pick me up today. Con and Mr Monster did so much I can't even list, SJ paid a surprise visit, while Jim not only loaded/unloaded me into the car and got me safely onto the bed, but brought countless thoughtful items and actually went back to the facility to get a forgotten bag then came all the way back. 

Berdie is going to come out and do jin shin on me as Frank is away. She came twice to the facility but I never dreamt she'd come here!

It's huge to me that I'm out. I see exactly the nightmare I wish to avoid, plus great stress from never being alone, totally under their control, and sharing a room with a 90 year old woman who seemed to have given up the struggle. I often wonder what it must be like to have a life as these stupid neuro things began with an injury   ~25 years ago. Ah, well. 

05 November 2013


Having a difficult time in my worst nightmare. Being supported by Lucia Jim Tiff Con Dave. Working very hard to gain strength. Out of tamoxifen half life. Pretending I'm in prison. Hot atmosphere makes me super weak.

Want to go home. Can't believe people who only have one disease are bothered. Would be nice to just have two.



Chris sez:

Will bring a file if still called for..I fly into Seattle, land at 1320, so probably 330-4PM by the time I get to you- depending on where you are at that point. Address of the prison as a back up would be helpful, and if you are still there and thinking of letting you out- though I doubt it would be on good behavior- I can drive you home if that tips the balance.

Keep fighting eh!



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