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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!

19 October 2013


My life has reached a weird but absurdly funny plateau that in my trusting moments I can enjoy a bit, but which mostly would seem awful looked at from outside.
My willmaking activities have run off the rails and I'm having to begin from scratch. I have found a nice notary but that's it so far.
My doctor letter is sitting in my mailbox this past week, but eventually I'll get it.
Yesterday I got stuck being unable to move on the bed with the lights out, which sucked. After a while I could get up, though. The weakness is X 100 when my core temperature is just a bit raised, which I'm countering with icy seltzer, ice fruit bars, ibuprofen, keeping the house icy cold, and medical mj. If I get cold I'm more spastic and can't move my arms, so the medical mj helps with that. It isn't that I don't feel cold - it's like slow torture having to be cold forever, but better cold than weak. It's also like a very touchy and difficult mechanism which is akin to defusing a bomb every day. It's very neat to defuse it, and the task is always absorbing, but it sucks when it goes awry.
SWMNBMIMB told me I am her role model for kindness, which I find crazy as I don't find myself particularly kind and I don't think I'm generous although I try.
I knew I had cancer a while ago as I suddenly saw the same red-rimmed eyes that my mum had when she had it. I look worse and worse these days, which is comical. Comical to me, anyway.

13 October 2013


On Thursday morn I was idly thinking about my cwazee life and wondering what in the hell it could be good for assuming one believes in reincarnation. The word PREPARATION popped into my head unbidden so perhaps it's that. Reincarnation has always seemed a bit too much like wishful thinking to me however it suits me to believe in its possibility right now.

Although through my own experiences I know there are more things than are usually given credence, I don't know exactly what all those things are. However, I'll take them  :-)


Although I've had a medical marijuana prescription for some time I've only started using it on a daily basis for a few days as I nibbled an edible and felt my temperature go down. That's huge to me as I've been struggling with low grade fever for a year.

Fever makes me hella weak. Heretofore my ways of coping were cold seltzer, ice bars, and ibuprofen. Ibuprofen hurts my liver and is no longer effective anyway.

I wasn't sure my thoughts were correct so looked it up online and, yes, it reduces fever.

"Clinically, cannabis appears to actually lower temperature and a couple of patients have described a sense of cold with transient shivering. The question could be answered readily by comparing temperatures of persons who have THC metabolites in their urine and people who don't. If there turns out to be a significantly lower temperature in the cannabis-using population, one might posit a slower metabolic rate which, over time, might have implications for longevity. Temperature has a significant effect on metabolic rate. We have to understand the mechanism of hypothermogenesis."

I first really thought about it consciously last Thursday when I took a nibble as I thought less spasticity would perhaps help me hold urine as I was weak and knew I'd never be able to hold it until I was strong enough to get up. I was surprised when I was later able to get up 2.5 hours earlier than I'd expected, at 7:45.

11 October 2013


Wow, I had the variety visits this week:
Mon Tiff and Frank
Tues Enjah
Wed Enjah and Justin
Thurs Enjah and Frank
Fri Frank
I had a blast with everyone even if I couldn't move a lot of the time. Enjah read my tarot cards, too, which was neat.
I was happy basking in the warmth of Enjah's clarity and intelligence. She was more in her power than I'd seen her before, and I loved it.

09 October 2013




On Monday Frank came, then Tiff visited, which was a lot for me, but wonderful.

Yesterday I had a fabulous visitor! Enjah came, and the first thing I did was start crying. I'm barely understandable now anyway but sobbing and laughing interspersed with noises was my way of greeting my friend. Kim had been there earlier so I had hadan exhausting day.

Today I had two visitors - Enjah and Justin, and it was delightful. I was a blob but they both were so capable and smart and loving that it was ok. Justin brought homemade cookies and a Cafe Jack mug, and Enjah cooked delicious lamb stew, greens, and had previously feed us sandwiches and merlot.

I have one last day with Enjah before she wings her way back to Texas, and I very much appreciate her visit.

Lately I am unable to move from roughly 3 or 4 until about 10. I seem to've stair stepped down recently.

Thinking about the day at the surgeon's a couple of months ago, how I knicked myself then bled like a stuck pig, and how I was told it'd spread but they couldn't know how far without further procedures which I was unwilling to do, I wonder if has migrated to bone marrow. It's fine, whatever. I feel awful and have no strength for anything much. It was a triumph today that I managed to last until 9:45 then get to the toilet before anything untoward happened. My life has shrunk to such a level but haha.



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