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Tuesday, September 29, 2015

Long winded

It (again) occurs to me that far and away most of my posts look inwardly rather than upon the more important reality of my environmentally affected existence. It is beyond high time I turn my focus outward to overrule the perception that all of my issues are self imposed or isolated from my surrounding influences. A microcosm of all things crucial to my well being stands before me, waiting patiently while I busy myself before a mirror, ignorant and foolish beyond comprehension. Without outer conspiracy there can be no inner resolve, no inner peace. Without life there is only death. It today occurs to me that I am blessed. Let me explain.

First, some peculiarities. The second toe on my left foot tends to mount or spoon my big toe. I have no idea why. On the matter of excess saliva: it is worse when I crave a tenderloin, which is all the time. My breathing problems only occur when I'm short of breath. Coincidence? After a CT scan, numerous X-rays, a very detailed Sonogram and exhaustive spit, blood and urine tests, the concencus is that my liver and other digestive organs are working properly. This is no surprise to me, I've said all along that it is stress that drives my pain. About the feeding tube: on the tube itself are markings every three eighths of an inch. When the tube was freshly inserted, the depth of penetration was one and a half inches. Through my stellarly superior abdomen manipulation technique I'm able to pop and retract the tube by sucking my stomach away from my abdomen wall, thereby pulling the tube inward an additional half inch. It is Amy's unpleasant duty to cinch the rubber washer back to its proper location. I can, and do, belch out of the tube when Amy feeds me. I'm currently trying to blow the cap off the Lopez valve.

Let us move on to........ First, there is Asa, my youngest grandson. He turned two in June. Long before he was born, I pondered whether I would see him. That spring I almost died from sepsis. I didn't die. You probably know that. Not only did I live, but I'm still alive today. I know, you gathered that. I'm thinking that Asa is one of a thousand driving forces that keep me on the planet. He readily talks to me, asking questions I cannot answer, gazing at me with his liquid blue eyes and repeating the question over and over until he gleans an answer in my eyebrows and flutters his lashes in affirmation in acknowledgement well beyond any child of two. Then he goes nutzoid, hops, struts and collapses in a heap just to demonstrate that he's a normal toddler. But we both know the truth.

Nine hundred ninety nine influences to go.

Friday, September 25, 2015

Life and death

Sometimes reality trumps thoughtful processes. Often wishful thinking attempts to derail our natural mechanical rhythms. The resultant cataclysm need not be negative. There can be no battle without the components of both. In my case, the conventional wisdom brought forward to lead the fight is without merit or ability. I've drawn myself through the gauntlet to where I am today, weak and fragile. It is high time I embrace preternatural forces. These include placebo, the best lift in the business, whether it be God, sugar or suggestion. I'm done thinking.

I'm not sure I will survive the necessary process. I'm not sure that I need to. I don't really care. I just ask that I have no more pain. Every time I visit a hospital I leave with the real problem intact. Sure, they focus on what they CAN do. It is not enough any more. This feeding tube is the last for me. It better not break. The little blue pill is working on my gut. The ultrasound, I'm certain, will clarify the condition of my liver and gallbladder. The Trilogy works well.

As of today I'm through with worrying. It is getting me exactly nowhere. I only ask that when the time comes for me to die, it comes quickly and painlessly. I don't want to linger as the masses congregate around my deathbed, pray over me and offer condolences to Amy.

I will write my own obituary because I'm really good at that. (making shit up).

Sunday, September 20, 2015

Here it goes

There is no logical reason for me to believe that organ failure has led to my ALS. There is reason to believe that ALS contributes to a variety of malfunctions within the human body. Psychological effects play a significant role in the the course of the disease. Depression of my sort has had a huge impact on my particular condition. It is my belief that the core of ALS in general is as fractured into as many pieces as there are sufferers. There can never be a singular cure to a disease possessing such singularity.

It is nonsensical to try to solve a problem by treating the resultant symptoms without first solving the instigating source. Until the underlying culprit is identified and eliminated, the best we can expect is to keep the boat afloat by bailing water. The leak will persist and eventually outrun any efforts to solve through faulty reasoning.

Do I deny backwards intervention? No. Do I think such intervention is worthless? No.

Healing peripheral issues in order to extend life is almost paramount. If nobody bails, I drown. The truly paramount problem is the leak.

I used the word "nonsensical" improperly. I need this "water bailing" until the leak is fixed. Don't get too wrapped up with the bucket brigade and forget the real riddle to be solved.

Thursday, September 17, 2015

Arf!

Just as I expected, my gut issue is due to the physical stress I put upon myself when I'm even the slightest active, ie, trying to keep my head upright while in the van, especially during stop and go traffic or while climbing or descending on the interstate, making an effort to find my balance point while inclined in bed, Amy forever moving me left or right to help me, or any other activity that stresses my mind or already compromised core. Imagine a device attached to your abdomen that forced you to experience crunches or situps day and night. That's what it's like.

Why do I come to this conclusion only after two years? Because I've been in denial of what is obvious. I am decidedly slow in these matters. I should have caught it long ago. Of course I could be wrong- so just to be certain, I will get a sonogram (ultrasound to all you youngsters) on September 28 of my guts, including my liver and gallbladder as a followup to a recent CT scan to be sure that there is no sinister mofo lurking amongst the organs. I'm confident they will find nothing awry.

Other news: I get my feeding tube replaced on September 23rd, Sarah's 36th birthday is on September 24, Rachel turns 34 on October 5th......

Oh, this weekend we host Dodie Magis from Jakarta, Indonesia for classes in Javanese Magnetism. Awesome guy.

Finally, the end. I'll be back.

I failed to mention that today we visited Doctor Rubin, my gut guy, and a regular regimen of a medication I've been taking only when the pain is manifested should help with the spasms, and the primary side effect is a dry mouth. Heavenly for this drooling bulldog!

Thursday, September 10, 2015

Hello again

Finally a decent eyegaze accuracy. So much to say, such limited ability. The infuriation is only surpassed by the lack of inflexion in my voice.

I'm going to expound upon my vast, yet prejudiced and very personal experiences with ALS. It reads like a comedic take on Dante's Inferno. It flies in the faces of everybody, inflicted or not, expert or layman.

First, there are no experts. The theories of the most educated compare favorably within their community. The theories of the fringe compare favorably within their community. The truth lies within the ether making up the void between. The term "exact science" is either exploited or ignored. If you adhere to the notion that science has the only answer you are just as blinded as those who don't. It is much more complicated than that. The myriad concepts of onset may all be true. Just as these sentences are abrupt, the answers are marathon. It's good to be back!

So, you want more of me? Demand it! Only your demands keep me in line. If you fade, I fade.

Don't get me started on the lack of progress through the ALS Association. If I'm notified of another "walk for ALS" advertisement I'm going to dump their email. They ignore my requests to offer a link to my blog in their newsletter. Hats off to the MDA, though. They rock.

More later, including my take on liver, silver fillings, adrenal gland fatigue, stress, gut ache, etc.

Thursday, September 3, 2015

Sad

God only knows when this post gets up. No internet in our hotel room. Impossible to eyegaze in the light of the library. No, I'm not dead.