You wanna know why?

There is a reason I'm still alive. It's not what you think. It's not what I think.

Do understand that, given the opportunity I'd have found a way to end my life years ago. It just never materialized. Something always got in the way of success. Either a grandson was coming or relatives were to visit or Dexter was on or Nick was playing or Rachel had to take me for a ride in her Jeep or Sarah had to ask me something about God or Amy needed my advice on something or my blog needed writing or Facebook was missing me or the nurse was coming over or I had to pee or the sun was out or the mosquitoes were too thick or Amy had to pee or it was Lent or it was too early or it was too dark  or a dog was barking or a little lizard was in the house or Alex was being Alex or Isaac built a Lego Spacecraft or Asa bit my toe or Rodney Dangerfield was alive and well, living next door or the van was broken or my newly ordered Tesla was pink with  Mary Kay sticker in the rear window, or, or, or........

I don't seem to have the time to get anything done.

Not about the problem with facilitation....

I'm just too busy.

Historical bearing

This blog will be four years old come July 12th. It has endured the decimation of my ability to communicate. The scope and creativity that thrived in the first year, when most of my degeneration was imagined and put to word, has been gradually supplanted with the reality of experience. Frightening is how horrific was my description. More frightening is how accurate was my prediction. Wordsmiths forgive my terrible sentence structure, but it works for me.

When I read my older posts, I find less naivete than I would have expected. In the grand scheme, I was all too "spot on" for my own good. The machinations of my ALS nightmare are crystallized before they were realized. How can this be? Perhaps my predictions were simply intended to be the guide to materialize my future. Maybe I'm living the prophesy according to Tracy, self fulfilling. Write what you believe, believe what you write. Think about it. I may have created my own monster. If I'd not been so graphic, so colorful, mightn't I be living a more sedate horror?

Far be it from me to expand on self blame. I've used up every morsel of that shit. There is nothing left but reminiscence. Look back at my early efforts. They spell out my future perfectly. Rather than having imagined my future in the entries of this blog, I created it.

Nobody can brainwash me like me.

Devices

An artificial appendage now protrudes from beneath my left front ribcage. The quarter inch device extends ten inches from wound to valve, a complexity of turn buttons and insertion points akin to a Rube Goldberg delivery device. It dangles to and fro, often tugging my flesh as gravity dictates from my position. Welcome to the Lopez Valve.

Even after a week my body is still trying to reject the tube. On occasion the muscles surrounding the insertion location convulse and move the tube in and out.

As fluid and sludge is injected into my stomach I feel it pour in; cool, warm, gassy, unpleasant......

The psychological effect brought about by observation of the process is stunningly depressing. I wouldn't have thought it so. For me, this is only until I'm cured or dead. An eternity either way.

The Trilogy breathing apparatus discussion is for another day.

Don't get me wrong, these devices help me. I'm just pissed off that I've come to the point where they are necessary.

Road to insanity

I'm out of ideas. The discomfort I'm feeling is only eclipsed by the pain that comes and goes like a cowardly harbinger of death continuously missing the mark of the Assignment. I'm simply the butt of a perilously close example of failed accomplishment, teetering on the brink of dumb luck success. Of this I am sure to be worthy in as much as a victim of his own circumstance can muster. I'm not saying more than is implied by my actions. I piss off the pious by not resigning everything to the mercy of God. I alienate those who bring alternative remedies too far fetched for my knockwurst brain to accept. I anger those who think I fail with intention to comprehend the mind/body experience.

The things that go through my mind are pathetic when compared to the entity that has infiltrated my body. I've largely failed to successfully render the key to unlock my debacle. If for some reason I were lucky enough to open the door it would likely kill my ass on the way out.

If you think I'm losing it you would be correct.

Feeding tube adventure

The feeding tube installation process included poking a large needle through my abdominal wall and perforating my stomach. The inside keeper is an inflated balloon and the outside keeper is a sliding Button of sorts, cinching the two together and positioning the gut against the abdominal muscle. According to the surgeon, I have significant muscle. This presents a problem. When my gut spasms, which is often, the action causes the button and balloon to separate. Upon the finish of the involuntary action the button and balloon slide back together. I feel it and swear I can hear it. Does it hurt? Of course. Will it continue? So far it has. We'll see.

Not worthy of title

One sentence : Still feel like dog shit but now I'm geared up with contraptions.

A downer

Being both tired and out of breath and unable to move and unable to talk and sick to my stomach and scared of the surgery and knowing I'm coming out of that surgery being both tired and out of breath and unable to move and unable to talk and sick to my stomach is disconcerting.

One thing is certain : Surviving is beginning to be a painful pipe dream. The realities are trumping my idealism. I need not to measure the quality of life on a daily basis as the length of the measurement tends toward the negative.

I apologize for my depressing post. This is just how I feel today.

If you think for one moment that I am brave or heroic, be aware that the only things keeping me from checking out are my cowardice and the lack of ability for me to call hospice. That, and the many friends and family members who would be disappointed and sad with the news of my exit. Add Amy to the mix and the deal is sealed. I'm just saying that this is no picnic. It's not like I have a choice.

Don't fret. In an hour I'll think differently. I never stay on task. I love that about me, so easily distracted and influenced

Updating again

Today I had an appointment with the pulmonary specialist. His staff adjusted my Trilogy breathing trappers. It looks like I'll be breathing with assistance most of the time. I'm also scheduled for a feeding tube on Thursday. These new developments are both necessary and overdue.

This in no way impedes my ability to travel. Rather it makes life easier for Amy and more predictable for me. We intend to keep our plans to travel to Austin for father's day. We also plan to visit Peoria in August. That is still on.

Letters to my neurologist and the recommended pulmonary specialist.

Dr. Heitzman,

It has been a long time since our last visit. The primary reason is that contrary to popular myth, at least in my case, misery does not love company. It just became too difficult for me to continue. Maybe I can change that.

Briefly, here is my current status :

Breathing problems, specifically, shortness of breath, though my oxygen saturation remains at  96 to 98%. On several occasions I've tried to use the Trilogy breathing apparatus but it blows air too forcefully, even on the lowest setting, for me to handle. Unaided, if I yawn, as a consequence I cannot inhale for a period of time until my diaphram catches up. Generally, breathing is manageable, but I feel it is beginning to be a more consistent issue.

Gut ache. Likely stress related. Since my muscles are failing, it seems every effort I make at moving relates directly to my stomach. Add a slowed digestive system and the problem is worsened. Chronic.

Excess saliva, yes. Not always.

Trouble swallowing, yes. Aspiration, rarely.

Most foods pureed. Not all.

Thickened liquid, no.

My neck muscles are very weak. Balance is a fine line.

For some reason I can still lock my knees out and maintain a stand, though my core is shot. Amy can still lift me and transfer me.

Weight loss, obviously. I was never heavier than in the year following my diagnosis. It was not natural to be so heavy. Though I'm too thin today, it is due to my failure to ingest enough calories to put on weight. Thus, we seem to have no recourse but to get a feeding tube. I'm more than a little fearful of any kind of anesthetic. It terrifies me.

I have an annoying nerve activity in my right leg, originating on the outside of my thigh about six inches above my knee and radiating down to my foot. Occasionally my foot jumps. This problem occurs mostly at night and wakes me like clockwork every 90 minutes.

I need to know what I can do to address these problems. Thank you. 

Dr.Viroslav,

Please let me tell you my issues. Since I'm unable to talk this is the best way to communicate.

Though my oxygen saturation remains high, I'm almost constantly short of breath. I only sleep for an hour or so at a time, and when I awake I'm almost panicked with the need for more air. On many occasions I've tried to use the Trilogy breathing apparatus and can't function, can't communicate with my wife. Neither the full mask or the nose pillows work for me.

I can't cough up phlegm and sometimes it takes my breath. Cough assist is worthless since I can't breathe well enough or deeply enough.

On occasion I will involuntarily yawn and for a time after I feel like I'm suffocating while my diaphragm catches up.

My o2 level hovers between 96 and 98%. My blood gasses are normal as of my last ER visit where they hurt me with a deep arterial stick without warning.

I need to have a feeding tube installed because I'm having problems swallowing. Dr Heitzman said you could coordinate that for me.

If there is no way for me to use the Trilogy, I'm interested in learning more about a vent. What limitations would I incur? How invasive is it? What if I hate it? Is it permanent? What if I opt out? Is there a way to die without suffocating?

Please excuse my candor. I'm not typical in my writing.

One last thing. I'm terrified at the thought of anesthetic. I'm having problems breathing with no stress as it is. Please make me feel more at ease. Thank you.

Yes, I wrote this with my eyes.

Updater

When I'm on, I'm on. These days I'm off. Literally off. Physically and mentally off. Until recently I've been able to set aside both inconveniences and write.

On July 7th I have an appointment with a gastro guy to discuss the probability of a feeding tube to be inserted through my flesh and into my stomach. Five minutes ago I found out that I've an appointment on Friday with a renowned pulmonary specialist. If things go right, this guy will help with my breathing and direct me to his network of specialists who, like him, work exclusively with neurological disorders that affect breathing and digestion. My neurologist, on Friday the 5th at clinic, recommended this guy and warned that the doctor was looking to retire and may hand me off to one of his newbys, who are competent but not him. The main guy only sees patients Tuesdays and Thursdays from 1 to 5, but for some miracle is willing to see me this Friday at 10 am. If Dr. Heitzman, my neurologist, had anything to do with this, my assessment of him will change from lukewarm to piping hot. In fact, I'm already heating up in his favor, and so is Amy. He actually acknowledges much of what is the truth about ALS outside of typical medical dogmatic response. It is refreshing to know that my doctor sees his patients as other than statistical lab rats.

So, if I'm successful in my interview on Friday I may be able to breathe better and gain weight in the near future. At present I'm hovering around 140, fifty pounds off my ideal and sixty pounds off my previous walking around weight. Also eighty five pounds off my plumpness in November of 2011 after following my Peoria ALS nutritionist's advice to pack on the pounds with a high carb diet. Idiot.

Will I have a breathing apparatus? Likely. Will it be a vent? Not at the present time. Will I have a feeding tube? Only if I survive the surgery. Will I have this figured out before my trip to Peoria? Yes.

Thanks to you and your patience.

Crap

Breathing and eating. Two of the things I'm likely to need in my future. By artificial means. No more fun than a feeding tube and air assistance. Shit.

ER adventures

Three visits to the ER in one month and feeling just as shitty after each visit has impressed upon me that testing for anomalies has nothing to do with solving my problem any more than stabbing me quickly will shorten the duration of my pain. My veins are diminished, thus finding them is problematic. More for me than the nurses, certainly. Add the North Dallas Forty Nick Nolte knee injection technique employed by the respiration Witch as she plunged a horse needle at a right angle three quarters of an inch deep directly into the inside of my wrist. This form of brutality extended far beyond the invasive nature of bringing a quart of blood from my collapsed veins ten minutes previous. This crap yielded what? If I didn't scream it was not for lack of trying!

The reason for this most recent ER excursion was terrifying for all. I suddenly became severely agitated and dizzy. I might even have lost cognitive ability during the episode. Amy grabbed the blood o2 and heart rate monitor and put it on my finger. While my oxygen was okay, my heart rate was down 45 beats per minute from normal. I couldn't breathe and my legs locked out. My head lolled to the left and the room spun. I was totally out of it.

By the time we made it to the hospital my heart rate had returned to normal but the shakes and spasms continued. This just has to stop, please. It's making Amy a nervous wreck. It appears that this episode is quite common. A reset of sorts. Well, f**k that!