Wednesday, October 31, 2007

when i was 2 or 3 i was on the floor playing with sounds: 'buk buk buk, tuk tuk tuk, guk guk guk.' my father walked by at the predictable point and sternly said 'you watch your language!' he was angry. it delighted me to be thought consequential. the next day i waited until he was around and tried again. i thought it started with 'f.' this time he remained grimly silent.
|

Tuesday, October 30, 2007

om
|

Monday, October 29, 2007

my discomfort, pain, or need for air is seen as an attitude problem.
|

Sunday, October 28, 2007

now i have my first beard. it is reddish (the irish) though my hair is nearly black (the lebanese). could no longer tolerate lifting chin for shaving. a small trimmer is used to keep my upper lip bare so my breathing is not obstructed by gobs of mucus or blood.
|

Saturday, October 27, 2007

it was plodding and dull, but i played barbie and ken when my sister bade me. my father made her stop. i had asked to learn to knit. it was hard. i started my first project, but gave it up one evening when he came down the stairs and frowned at me.
|

Friday, October 26, 2007

>
>
>
> A while back I asked about the spaghetti sauce recipe you posted once upon a
> January, about cooking it covered or uncovered. I ended up not making the
> sauce like I’d planned to. I’m just, like most everyone, so busy that I use
> bottled and canned everything and while my intentions were good, it was just
> always easier to grab a jar of sauce and open it. Voila, dinner!
>
>
>
> Well, I’ve been required to take a few days off to care for my sick
> daughter. So, I decided to make the sauce. I wanted to let you know that it
> was DELISH, and even though it took a long time to cook, it really wasn’t
> laborious. My husband and children raved about it, even the sick one who
> hasn’t been interested in eating much of anything.
>
>
>
> The only down side to making the sauce is that I predict a phenomenon
> similar to when I made my first home made pie crust… I will no longer be
> content to use ready-made!! But in a way, I think that’s a really good
> thing for me. Thank you.
>
>


--



brainhell2003@gmail.com
http://brainhell.blogspot.com/
|

Thursday, October 25, 2007

daughter,

last year i helped you carve your pumpkin at your school. it was fun. thank you. this year i am too sick to help. sorry. but please ask your mom to take a picture to show me.


love,

dad
|

Wednesday, October 24, 2007

yes i know i's hokum, but a japanese 'scientist' claims results from labeling containers of water with positive words. watching 'what the bleep do we know?" with my wife, it was suggested that, the body being mostly water, this could be relevant. therefore i will ask my wife to tape small pieces of paper to the hairless inner part of my arms above the elbow where i can read them. they'll say 'strong' and 'dextrous' (however that might be spelled). i want them on for at least a month, so it will be a big hassle for her to check them and fix them each time she sees me.
|

Tuesday, October 23, 2007

2105
|

Monday, October 22, 2007

u'd b am azed at what i endure.
|

Sunday, October 21, 2007

they're not idiots, but my communication barrier makes them function as such.
|

Saturday, October 20, 2007

HNT seems to have died out. i miss it, particularly those by TKW. but am too tired to read your b logs.
|

Thursday, October 18, 2007

this morning i dreamed that my BIL launched a rocket at the beach. it flew at an acute angle of about 30 degrees, but still went so high it was a speck. inland a hundred meters or so, i had trouble pumping my fists in the air. i saw the chute nearing the shore and limped toward it. it occurred to me that i should not be able to walk. it landed near shore. i waded out to it. it was one i built nearly twenty years ago.

csy 1530 1905
|

Wednesday, October 17, 2007

get wife. ppoop in shorts. need diaper, new shorts.
|
hi.

mousekeys.


went to bed before 11. woke and was helped at 118, 211, 247, 328, 422, 544, 611.



csy 1447 1900
|

Tuesday, October 16, 2007

when i would ride my 10-speed home from high school, uphill all the way, if i farted i would say 'retro jetro.' the idea was a joke that the fart provided a boost to me going uphill. i have never told anyone this, nor even used the phrase. it's not a secret shame or joy, i just never mentioned it.

csy 1430 2115.
|

Monday, October 15, 2007

son,

twice this week you have failed to do what my helpers have asked of you. please do what they ask right away, so you don't forget.

love,

dad

csy 1430 2149
|

Saturday, October 13, 2007

Thanks so much to the Person wHo toLd me about sticky keys for the disabled..

my son's teacher came to see me:

i'd lke to hear him read
good, thanks
yes
thx
he is too
thx ffor being so good


yesterday no cs, no towel.
|
no csy, not even chin down over towel. watched some TOS with son.
|

Friday, October 12, 2007

cs wedsnessday was 1500, 1900-2308. then no csy. i time these from the firrst minute i need suction to the miinute when i successfullyy get a tissue in my mouth wihout it triggering suction.

sometimes i lie to people to prevent them getting confused and notdoing what i need. yesterday it was ratty, about those documents.
|

Thursday, October 11, 2007

k.,

when i woke at 2 a.m., i pointed to 'arm,' but you read 'shoulder' above it. the adjustment i wanted would have taken 6 seconds, but we spent half an hour wasting energy as you told me about the strain on your back, my tendency to spell while you are adjusting me, and get so upset. i have a unique new idea ... please say each item as i point to it, per the instruction printed on the word page. in this way, i can quickly forfend you trying to roll me when i only want my arm moved, and the annoyance that you feel.

the bell is not an insult. it is how i let you know i need help. i ring once to start, wait 10 seconds, then add an extra ring. often you say 'okay,' 'i see you,' or 'don't ding-ding-ding' -- and then resume snoring. amazingly, recently, using this method, i reached 20 rings. good thing i was not drowning in saliva. but now we know that the bell won't wake up 'the whole house.'

yes the clock is off by a couple minutes. it is ahead. please explain how this makes you late leaving. perhaps you should get me up at 630 , so i can get set up, and you will feel less rushed. this morning you left without telling my wife. she has two rascals to deal with and did not know she was on duty.
|

Wednesday, October 10, 2007

i have been trying to learn how to use the computer via the keyboard only. if i use the mouse i often cannot get my arm back up onto the armrest.

csy 1815 2308.
|

Tuesday, October 09, 2007

He is a mighty conqueror.
In Him I'll trust all my vinyl sulphide.


using undiluted 3-percent hydrogen peroxide on the tongue seems to break up the fungal mat of thrush enough that it can be suctioned out.

csy 1650 2024, maybe because of the peroxide.
|

Monday, October 08, 2007

my night drool is digesting the skin on my left neck and clavicle.

csy 1800 2013
|

Sunday, October 07, 2007

for 6 months after the icu, i never knew the time while in the home hospital bed. i would guess based on the strip of sky i could see above the curtain. grey streaks plus bird song means 5 a.m. recently i ordered an icf-c218 and had it set up on the floor where i can see it from the bed,

csy none but drooled on towel 5ish to 7ish.
|

Saturday, October 06, 2007

my daughter was born a few weeks before my son's third birthday. on the phone after the birth, he yelled with great urgency, 'dad,i want you and mom to come home RIGHT NOW.' he yelled and screamed and hit ratty with his fists to force her to change the unusual situation.

i love him.

csy not bad, 6ish to 8ish.
|

Friday, October 05, 2007

i'm very impressed by how i maintained as much normal function as possible despite the robbery of ALS. case in point being how i would drive my son to kindergarten, and one day blogged about falling to the ground as i returned to the car.

no csy.
|

Thursday, October 04, 2007

k.,

we value you A LOT, which is why we pay you extra. but we also value o., and s. and they deserve to know when their shift ends. so does my wife. and the kids. if you arrive on time every day, you will get the extra check. if not, then not.

1800 2024
|

Wednesday, October 03, 2007

arm so weak. very hard to use computer.

1750 2024
|

Tuesday, October 02, 2007

in late afternoon my ONLY concern is not to cough/choke, it is NOT a good time to interact. pls as i have asked stay 12' away REGARDLESS of what you ate.

1800 2147
|

Monday, October 01, 2007

csy 1756 2013. it would have lasted longer, but my goodly night cna distracted me with scalp massage and combing. i lost count after 1300 strokes.
|
Weblog Commenting and Trackback by HaloScan.com