No big poop. Little ones though, in the appropriate receptacle.

I think that my ALS was triggered by Lyme that went untreated for years.

Constipation. Have Milk of Magnesia and suppository in me. Last poop was Dec. 24.

I started to cough around 3:17 PM, but then sat on the toilet until after 6, and there was no coughing, After I came out of the bathroom, the cough resumed.

I need help getting on and off the toilet.

I shat myself at 8 PM, precisely when she was getting the kids to bed. Go ahead and laugh: I'm wearing a Depends as I type this.

You know who dealt with all this all day. All praise my saintly wife.

We went to see the pulmonologist that the allergist referred us to. Lots of stress and I missed my shower due to the early time of the appointment. Completely useless, he was yet another person who told me that my lungs are fine. His examination of the X-Rays could have been done without us having to show up in person.

Friends came by yesterday to play Risk with the kids, me, and my treacherous wife. One of the visitors won the game, which was fun but exhausting, as it coincided with that day's Maximum Cough Period.

Back before the childish GOP invasion of Iraq, a woman we know wondered in an email how they could possibly think this was a good idea. I understood the stated reasons, and detailed them in an email reply. I also added my conjectures, including the establishment of permanent military bases. I added that hoping to accomplish all this without an insurgency was like hoping to have a picnic at which no ants showed up. I thought that this metaphor indicated that I was not a believer in the insane GOP hookah dream. But I did not use words like 'insane,' just tossed in the ant metaphor. Not long after the first bombings and killings by the bad guys, I wrote a follow-up email in which I recapped my picnic metaphor and wrote, 'Well the ants showed up.' She replied that it was refreshing, or admirable, for me to admit that.

Every night at 8 PM Pacific time (California), I connect to chessclub.com as user brainhell. Challenge me with 'match brainhell 2 12' and tell me you are a blog reader with 'say I read your blog' and I will blog about our game.

I think I had anoher episode of abdominal pain yesterday. I say I think because it was so mild. It might have had to do with the upchuck bug or anti-nausea meds Sunday and Monday. But I think it was more'sludge' on my gall bladder -- greatly reduced in intensity due to our use of lipo-similase with each tube feed. That bit was my sweet wife's idea. The mild ache was about the right duration.

Then at 10 PM I barfed. Not very much, and thin, it must have been mostly the water that the anti-nausea drug was mixed in. My breathing was not impaired by thick ropy wads of mucus as I had feared. The 911 crew that came seemed disappointed that they could not use their skill set to save me. They were nice, though. My wife, a hero.

One time when I was a kid, I invented a "code" which was really just a substitution cipher. I must have been about six or seven. I bragged that no one could break the code. My sister, who would have been 12 or 13, said she would try. I enciphered "The cat in the hat is back." I was astounded that within what seemed like 10 minutes, she had cracked it. She had a library book that talked about frequency analysis.

Listening to BBC news in California tonight, while sitting in my wheelchair, I am not even sure my comment is going to the right show, but I do know this...

Regarding the story about Taiwan's first lady: NO ONE IS 'WHEELCHAIR BOUND' OR 'CONFINED' TO A WHEELCHAIR.

I slept in a bed, not tied to the chair. That would be too kinky.

Slept well. Feel fine. I think we beat the upchuck bug.

She was in her twenties and sexy. Very. Women with bodies like hers were why the term 'bombshell' was applied. She had a sexy face too and a flirty personality.

I defy a hetero man to have met her and not have carnal thoughts.

Plenty did. I was 30, but it did not occur to me that she might consider me suitable. I now think that I was one of at most three whom she considered.

She once told me she was weary of boyfriends giving her credit card and saying "Here, get whatever you want."

After I left that job I ran into her on the streets about a year later. She was chain smoking and jumpy and said "They have me going to the weekly Director meetings. The Director! I have nothing to contribute. I don't even know why I'm there!"

We were not close friends, so it would have been mean and degrading of me to say "Maybe you're there because someone hopes to associate themselves in the Director's mind with sexy you."

Extra spastic last night. So tired today. Think body was fighting the upchuck bug whole family has had. Felt that weird pre-barf feeling. Intensely loyal infusion nurse took our call while she was with flu and asleep -- on Christmas Eve. She arranged anti-nausea prescriptions from a doc she knows. My fabulous wife lost her whole day plan and tubed me the drug, cared for me all day. Sometimes I wonder how I got so lucky to pick up such wonderful people.

You will probably feel a LOT of guilt over the circumstances of my death. This is because it is likely to seem like a preventable accident. I will probably suffocate somehow. And you will blame yourself for not being home, or not responding faster to that noise. I may even be trying to get to you, and might die in evident distress. Sure, suffocating scares me -- I'll be frightened. But unless you take a golf club to my head, know that I DON'T BLAME YOU. I do not want you feeling guilty over something that crept up on us so slowly. Listen to me: My death happened. The circumstances may have been desperate, but I'll know then as I know now: THERE'S NOTHING TO BLAME YOURSELF ABOUT. I lived much longer and much more happily because of you.

1. My adroit wife has a method for getting me out of bed that I would like you to use. She wraps my legs and brings them down when she pulls up my head. This is better, because putting my legs down first tightens my throat, and I might choke.

2. Please pull my torso farther forward when you sit me up. No one leans me forward enough, and I struggle. One of the tricks I use is to put my right foot under the wheelchair. But the left foot often stiffens against the floor, so if you could rotate the left under the bed (like a clock hand turning), that would help. I have knee joints which easily flex to the side. I can sit with my legs bent like the letter "M."

3. Because I cannot speak, I often say "No!" when I mean, "Not yet, thank you." It does not mean that I don't want help, just that I need to get ready first, by swallowing, breathing, or shifting my weight. Please keep that in mind.

Most of all, thank you for your valuable help!

The small free sample of Rhinocort that the allergist gave us drove off my annoying cough for about a week, until the sample ran out and the cough returned. I'm on a prescription now, and it is reducing the cough but has not eliminated it. Make me a Rhinocort junkie.

I had a very weird dream Sunday night, Dec. 10 -- horrific, almost a nightmare. I was in some courtyward with an older lady, grandmotherly, nice. She had three dogs over yonder, a large collie/shepherd mix, and two thin greyhound-type puppies, growing, not yet mature. The large dog was named -- oddly -- Grandmother, and the twin puppies were called Junior.

Grandmother started getting hostile with Junior, and took their heads in her mouth. The woman I was standing with (note: standing) rushed off, maybe to her car, maybe to get a leash. She clearly intended to control the dogs.

Grandmother had gotten Junior over to a corner and was furiously swollen with combat rage, her hair raised, her body larger. She looked like some horrible, angry panda. She was biting Junior's head off. I watched it. Brutal. Savage.

Junior cried "No! No!" several times.

I thought: "I guess dogs can talk. All animals can say 'No.' It's such a core concept."

By now I was disabled, lying there, unable to move effectively. I feared that Grandmother would kill me next. But I told myself that she was so engorged with Junior that she would not attack me.

The nice older lady came back and I (no longer disabled) told her "Grandmother killed Junior and ate him."

She didn't like that news, but tried to be philosophical: "Oh well, it happens in the life of every dog."

I thought: "Every dog eats another dog? I don't think so."

Then arrived Paul Robinett, from YouTube. There was going to be a party, and he showed up with some other guests. He knew Grandmother and Junior too. He was also trying to take the horror in stride:

"I guess she just saw him in the kitchen, and ... BAM!" He chuckled, not because it was funny but in a what-are-ya-gonna-do? way.

The last part of the dream concerned a prior party, where someone had been instructed to give the first person bringing wine a sticker thanking them for that. But they gave the sticker to everyone who brought wine, so six or eight people showed up at this current party with the stickers.

I remember, as a small child, thinking that adults were easily distracted, and had trouble staying focused. Almost every time I tried to share my thoughts or jokes, they would become distracted by by another adult, usually trying to patch together what they had already been saying before I interrupted.

When I get in bed I will stand using grab bar. Then, when signal, put your hand on the back of my neck, to prevent falling. I will SLOWLY sit -- be patient. Then I will reposition chair. You plug it in. Then I lie down and roll to my left side, and you cover me.


Getting me up in the morning:
At 7 AM when the kids wake up, raise both my knees while I am on my back, and wrap the lower legs with one arm while putting the other hand behind my head. When I (not you) count to three, in one smooth motion lower my legs to the floor and raise my head. (The weight of the legs going down helps the head come up). Then make sure I am stable. Ask me before letting go. I may ask you to move my left leg back under my center of gravity. If you do so, be careful not to tip me over. I will then indicate that you should grab me under the left armpit. When I count to three, help me stand. DO NOT let me tip -- keep me straight! If I make noises of alarm, it is because I am tipping. I MIGHT indicate that you should move my left foot. Confirm, and do it with your own foot -- do not lean over! Then I will slowly and laboriously turn and sit in the chair. Hold on to my left armpit, but if I seem to want to lean, let me lean. Leaning is how I get my feet to move. If I make distress noises, then buttress me.

I used to think I was accomplishing a lot for my family if I could retrofit most of the downstairs before the baby was born. Now I think I'm accomplishing a lot for my family if I can breathe clearly and not cough while drooling into a trash can.

First the daughter had the vomits, then the wife, and yesterday, the son. I hope I am spared.



Since I was a teenager, I've felt that losers were people who tried to be 'winners' -- who got excited by popularity contests -- people who don't know themselves or have their own interests -- shallow people who watch TV. So when someone nominated me for the 2006 Weblog Awards, I was flattered. Thanks! But when I went to look at the award system, I saw that it was based on voting by web users. That's fine, but it's not for me. Here's why: The first couple of nominated blogs I looked at had big "Vote For Me" posts. It's a perfectly good system, but I want no part of trying to be a 'winner,' so I studiously avoided mentioning the nomination during the 10 days of voting. It's over now, and the Loser has been crowned. No, I haven't looked at #1, and don't mean to be insulting. Just arrogant. No, I'm NOT calling you a loser just because you got excited, and called for votes! Particularly not if you're an attractive Jewish woman who runs a group blog, and whose recently-retired Army officer husband could kill me with his pinkie.

We went to the clinic in the van recently, and my FVC was up 28.8 percent, from 59 to 76. When I asked why, they said there is measurement variance and "You were weaker last time." This is another way of saying "Your score was lower last time."

They really have no clue.

We had the sexy lady doctor write me a prescription for Rhinocort.

One of my brothers-in-law has a strong snobbish streak. This is explained by him being better than the rest of us. He once asked what I was reading, and I showed him. It was a history, and this guy's field is history. "Never heard of him," he said dismissively - as if that was why I'd shown him the book, as if it mattered.

Once we drove past a Jacobian structure of poured concrete. He snobbishly said, "That's the first time I've seen a poured-concrete Jacobean."

The next year, we drove past the same building. "That's the first time I've seen a poured-concrete Jacobean," he said snobbishly.

"That's what you said last time," I quipped. They were in the back seat. He probably wasn't aware I'd spoken.

In the summer, I starting pooping every other day, instead of every day. The first time I skipped a day, it freaked me right out. Then I began to accept it as no cause for alarm. It has often been every third day. I haven't been constipated since the end of May. Since the stomach tube went in, the pattern of two to three days has continued. Only once since the tube have I feel uncomfortably FOS, and a single dose of mineral oil (one of only two I've taken since the tube) took care of it. I think my bowel performance has greatly improved.

Bbut in other news, whenever I swallow, my teeth clench multiple times. This has been going on for a month or so, and probably is a Very Bad Sign. As if I didn't have enough of those.

The ring finger of my right hand, my only usable hand, is 'sticking' spasmodically these days, due to nerve deterioration. My blogging days are numbered. Hopefully it is a large number. We Shall See.

Sissyben is blogging again!

Some time ago, I published on the net the first part of my fictional history of the Gore Administration. I have now added the rest of what I wrote, in case you want to read it. I will never finish this novel. This is a typical passage:

"This stuff about Gore working weekends was always leaking out of the White House in those days," Brooks said. "You almost expected there to be a press release if he ever didn't work a weekend. The guy was so insecure in his office that he never once took a vacation in the first nine months of 2001. People started joking that the was the Teflon president: You know, stuck to the pan."

My dear wife rushed upstairs and vomited in the toilet. My son came when I had the computer shout that he should. I typed instructions on the computer. He read them and brought me the phone, and spoke to my sister, asking her to come help. Good boy. The daughter was admirable too. My darling wife slept in the guest bed. If I throw up, it might be fatal. If I have any warning, I'll void through the stomach tube instead. Keep airways open!

Rhinocort appears to be reducing cough.

Did get showered this morning.

My dear, wonderful wife woke at 4:30 AM to my raspy screeches of attempts to inhale. She helped me. Why curse her like this?

I was too weak and unstable today to get from my wheelchair to the shower chair safely: A distance of three feet, with grab bars and a CNA helper.

I think the cough lingers because of the cold, which started Wednesday. My cogent wife points out that at the clinic they had me breathing through the bipap for an hour with no humidifier. Maybe that dried me out and set me up? Geniuses.

CapnOAwesome wrote:

> Because I believe there is no god.

I replied:

OK, but since the faiths tend to define God as beyond the reach of human minds, science, etc., then you have a cosmic faith (There Is No God) akin to the flying spaghetti monster. You have a religion. I really doubt that there is a personified god, but it remains possible, however remotely, that perhaps even the Christian god is real. The question then becomes one of relevance ("Who cares?"). But even I would not be so foolish to believe that there is no god, given that it is -- by definition -- beyond my power.

No, I am NOT saying that you must provide a valid reason for absence of faith.

He replied:


Don't be stupid. Atheism is consistent with the natural world. Is it a jump of faith. Sure, but a very very very small one. Since god is not observable or recordable, any sort of interferance by a god in the natural world be a huge leap of faith.

And you are simply wrong about the active faith of most people. Most religions that define a god have a very specific definition of god, or at the very least very specific characteristics (I.E. a triune nature for the christian god) So very few peoples faith, and certainly nobody who takes a religion seriously actually defines god as beyond the human mind to understand.

Then I...

> Don't be stupid.

This goes a long way towards convincing me of your perspective. Just so you know, I'm smarter than you. And wiser. And way more experienced.

One can argue (but you knew this) that the natural world indicates a divine plan. After all, it gave us you, in all your glory, to advise us not to be stupid.

The anthropomorphic principle guarantees that we wonder why all the variables of our universe just happen to favor life. We wouldn't be here if it didn't. That supports the idea of a Creator until you realize that it's the anthropomorphic principle in action. But try telling that to the average person.

Of whom, sadly and in a very callow way, you are an excellent example. Have fun on YouTube, and perhaps some lucky day you will have the epiphany that implying that people are stupid to hold ideas other than your own is stupid.

And by the way, you are ignorant. You've heard some Christian say "Don't believe in Jesus? It's OK -- He believes in you!" This is based on the idea that God is beyond your power of reason. You state that religions have very specific God characters -- how true. But how dishonest of you to extend that into the thought that they have specific rational steps that will lead you to God. If they did, we would all believe. Or not.

Of COURSE no religion lays out the evidence and says, "Here, convince yourself!"

Like many so-called 'atheists,' you retreat to talking about what most people of faith believe. But let's assume they're all wrong -- every single one of them. You have no basis for thinking God didn't intend it that way. Believing that there is no god is your act of faith.

Don't believe I took your reply seriously enough to attempt to educate you -- a mere fledgling troll. I wrote because it will make a good post in my blog.

Slept well again last night with only initial coughing due to lying down. Was dosed with liquid Motrin these past two nights. Helps, I think. The cough is a bad thing, makes my whole body more spastic.

Valid patient results are dependent on collection, packaging and shipping of samples according to HHLA protocol. If protocol is not followed results may be affected.
Test CURRENT RESULT Expected Units Trended Results
AMYLASE
AMYLASE 78 28-100 U/L



CBC WITH DIFF
WBC 8.5 4.5-10.5 X 10\S\3 11-04-06 3.6 L 10-26-06 3.8 L


RBC 5.3 4.4-6.0 X 10\S\6 11-04-06 5.2 10-26-06 5.1


HGB 16.0 14.0-18.0 g/dL 11-04-06 16.0 10-26-06 15.7


HCT 48.8 40.0-52.0 % 11-04-06 46.1 10-26-06 48.9


MCV 92.8 86.0-110.0 FL 11-04-06 89.2 10-26-06 95.7


MCH 30 26-38 pg 11-04-06 31 10-26-06 31


MCHC 33 31-37 g/dL 11-04-06 35 10-26-06 32


PLATELET 228 150-400 X 10\S\3 11-04-06 236 10-26-06 251


NEUTROPHIL % 43 37-72 % 11-04-06 57 10-26-06 66


LYMPHOCYTE % 14 L 20-50 % 11-04-06 32 10-26-06 24


MONOCYTE % 5 2-14 % 11-04-06 10 10-26-06 8


EOSINOPHIL % 37 H 0-6 % 11-04-06 0 10-26-06 1


BASOPHIL % 1 0-1 % 11-04-06 1 10-26-06 1


ABSOLUTE NEUTROPHIL 3.68 1.60-7.70 *10\S\3/uL 11-04-06 2.06 10-26-06 2.54


ABSOLUTE LYMPHOCYTE 1.20 1.00-4.50 *10\S\3/uL 11-04-06 1.15 10-26-06 0.91 L


ABSOLUTE MONOCYTE 0.44 0.29-1.00 *10\S\3/uL 11-04-06 0.37 10-26-06 0.32


ABSOLUTE EOSINOPHIL 3.10 H 0.00-0.70 *10\S\3/uL 11-04-06 0.01 10-26-06 0.05


ABSOLUTE BASOPHIL 0.05 0.00-0.30 *10\S\3/uL 11-04-06 0.02 10-26-06 0.02


SMEAR REVIEW Y



HEPATIC FUNCTION
ALBUMIN 4.1 3.0-5.4 g/dL 10-26-06 4.5


TOTAL BILIRUBIN 0.5 0.1-1.0 mg/dL 10-26-06 0.4


DIRECT BILIRUBIN <0.1 0.0-0.3 mg/dL 10-26-06 <0.1


ALKALINE PHOSPHATASE 61 39-117 U/L 10-26-06 62


TOTAL PROTEIN 7.0 5.9-8.4 g/dL 10-26-06 7.9


SGPT (ALT) 47 H 5-40 U/L 10-26-06 26


SGOT (AST) 41 H 5-37 U/L 10-26-06 35

Slept all night with very little coughing. Rhinocort is starting to work. Yay.

I played chess against someone on the internet and gave my standard greeting: "I am playing from California and I voted for Kerry in '04. You? http://brainhell.blogspot.com/"

They said they was from Michigan and don't vote. I done said: "at least you didn't vote for Bush! ;-)"

They done said "You ultra liberal types make me sick."



Then forked their queen and rook, and they resigned.

But they did accept my rematch offer. They tried to distract me with lots of questions, like "Are you wheelchair bound?" to which I replied "I'm sitting in one now, but not tied up, you kinkster."



After I took their last major piece, they resigned. I typed: "Made you TOO sick?"

Have a cold with sneezes and runny nose, plus I spent most of the night coughing. Every time I sneeze, I bite my tongue, but so far no blood. Miserable. I was reduced to a mere airway. But perhaps the Rhinocort is starting to reduce my cough.

In the round-top wooden hope chest we were given for our wedding -- in the closet of the old study -- are a bunch of letters and videos and things for the kids to have when they're various ages after 20. All are marked with the ages. But SOME are for young kids. Please look through them when I die and distribute as appropriate.

I was gradually dropped on the floor this morning in one of those slow things where they get you off balance and then respond to your distress by taking a series of mistaken corrective actions. My left knee hurts.

Coughed, nonstop, every half second, all day long. Sucks. I think is Rhinocort working its way in, plus minor cold I am fighting off. My mission: Keep airways open! Don't die yet!

I was a small boy and I was walking up the driveway for some reason, I don't know what, but something that was not a elective choice -- something that was expected of me, perhaps school?. I saw a yellow-jacket, the insect. I froze in fear. It could rise up and sting me. I stood there a long time waiting for it to go away, but it didn't. Summoning all my courage, then I slowly walked past it, filled with absolute dread.

I remember being a toddler and being unable to tolerate the torture of long car trips. I don't know how long it was in real time, but it seemed forever and ever that I was supposed to sit on that back seat, with my legs straight out in front of me, not moving much. It was an unatural state for a toddler. After a while my legs and my hips began to ache. Plus, I was tired and restless. I would begin to whine, and blubber, continuously, a sing-song. They would try to ignore me as long as they could, not out of malice, but because when they tried to soothe me I would start screaming that I wanted to stop, to get out, to be home.

My father used to threaten to pull over the car if I kept grieving. A few times, he did. I would quiet down, and then when we were rolling againg the aanguish would strike me and I would begin keening again.

I snuck up the stairs and peeked around the corner at my dad. He was sitting in the swiveling chair by the fireplace in the front room. He picked his nose. Thoroughly. I had never seen him do that. He was human. I snuck back downstairs.

I was riding in the back seat of the car. I was less than 12. My dad was driving, and he and my mom were talking. A big piece of black plastic was wafting through the air down the road. I assumed it would flap down and cover our windshield before blowing away. I thought about warning my dad, but I figured he had already seen it and prepared himself, would not be alarmed. The piece of plastic whacked down on the windshield for a second and he was totally taken by surprise. The car wobbled as his hands jerked on the wheel. I figured he'd failed.

When probably only three or four, I was under the impression that if I could not see someone, they could not see me. So I squatted behind the small metal roadside reflector sign at the top of the front yard, and put my face up to it and (I think) closed my eyes. I was invisible to passing cars. I recall that some of them slowed down and spoke to me, which mystified me.

I do know that, from a similar position, and at a similar age, I was throwing gravel or rocks at passing cards. My parents told me not to. I believe they then went into the house (and watched me from the window). When I was sure they had forgotten about me, I threw some more gravel. My mother came up and hauled me into the house. I protested, but she said I was not allowed to throw rocks at cars.

We finally had the bidet installed. It sprays water in your crack to wash things away when you cannot wipe yourself. It's become very difficult for me to wipe.

It, and some rails that run alongside the toilet, were given to us by a very nice couple where the wife has ALS. She knows about this blog. Thanks!

Oh, and yesterday my intrepid wife picked up the used wheelchair van we bought. It has a ramp that extends out for the chair.

It is very easy when trying to help me with the feeding tube to get stomach fluid on your hands. It smells like vomit. It is vomit. I don't want to vomit on your hands, so please read carefully, and do not do any given thing without first getting my consent. Don't assume!

-Use a small container to empty the lipo-similase capsule into. Add a small amount of water, and stir.
-Check that the valve on the line from the gravity bag is all the way closed.

-Shake up the two Jevity cans. Pour one into the gravity bag. Add the lipo-similase solution. Add the other Jevity can.

-Close the top on the bag, and hang it on the pole.

-Carefully open the cap on the end of the stomach tube.

-Carefully insert the red, pointed end of the gravity bag line into the end of the tube. A snug fit is desired.

-Carefully undo the tape around the white, plastic stomach tube clamp. Make a mental note of how the tape was placed on the clamp, as you will later be asked to replace it.

-I will open the clamp, or indicate that you should.

-I will open the valve on the gravity bag line to the extent I desire.

-A long time passes, 30 to 90 minutes, while the food bag drains into my stomach. I will then ask you to assist me.

-Using an empty syringe, draw in 60 mL of water (the black part of the syringe plunger will be near -- but not at! -- the end of the syringe tube).

-I will hold the white clamp closed while you carefully remove the red, pointed end of the gravity bag line.

-Insert the syringe nozzle all the way into the end of the feeding tube. Maintain your grip, so that the syringe does does slide out of the tube, as it often does.

-Indicate to me that I may open the clamp.

-After the clamp is open, gently push the water from the syringe into the line. It should take about 10 seconds. If there is a small air bubble, good, but insert the air slowly into the tube

-Tell me to clamp the tube.

-After the tube is clamped, put the cap back on the end.

-Obtain a length of making tape about three inches long.

-Indicate to me that I can let go of the clamp. The clamp will remain closed.

-After I let go of the clamp, wrap the masking tape around it, so as to prevent it from popping open again. DO NOT allow the clamp to pop open, even a little bit. (It tends to click when loosening.) The objective is to tape the closed clamp so that itt says closed.

No barf on your fingers? Thank you, and congratulations!