Friday, April 11, 2014

I'll Be Here

"God knows what is hiding, in that world of little consequence
Behind the tears, inside the lies
A thousand slowly dying sunsets
God knows what is hiding in those weak and drunken hearts
I guess the loneliness came knocking
No on needs to be alone, oh save me"

- Cherry  Ghost: "People Help the People"

If my life had a theme song...this would be it. A song -- perhaps long forgotten -- to illustrate what I witness day to day:

Where is this God you promised me?

This heart is broken, and the sun lays down effortlessly...have I been forgotten?

The Landlord of this life -- he goes by the name of Loneliness -- is at the door.

He is my only  company...

...there is not a soul that has remembered me in my pleading call for help.


My previous post alluded to the abysmal news that my condition has progressed to a point where hospitalization is not only a given; rather, an expectation.

An expectation for my central lines to become clogged at the worst of times.

An expectation that my whole life will be dictated by my body -- flipping me the bird -- failing to carry on the most menial of tasks: digestion, sleep, breathing, standing...

An expectation that my life may be cut much too short.

The fury of being told my illness will be handled mostly in hospital has given way to an unexplainable determination to do whatever it takes to find myself in a more "stable" sort of landing ground. 

Because right now, the obsession and fear of infection and thunderstorm of more bad news has induced cabin fever. Except the cabin is my own body -- my own mind. This is not a cabin anyone can rescue me from.

And let me tell you: expecting someone to rescue you in any circumstance will leave you blinded by despair. The only person -- whether besieged by chronic illness, a fling that has enraptured you into owning a relationship with a paramour, or even in the frenzy of finding one's self seemingly lost in a forest of confusion and trees -- that will ever save your own life is yourself.

i'm frequently given into plans of action. I've had three months of not using my GI system at all. I am being told NOT to use it. I am being told that my liver enzymes are dangerously high, that my pancreas isn't able to regulate itself so that I don't doze off into a state of hypoglycemic nightmare.

tangled into a situation that stretches the term "waking nightmare".

I have a plan in place and OK'd by my primary for first another test of just water feeds into my small bowel. If there is success, we will go to trophic feeds.

My goal is to be able to do tube feeding again (which is less dangerous and has better outcomes) and be able to cut down on how much I am having to do per gastric drain per day.

You mat think me mad to want to jump into this again.

But I see it as a matter that madness would be to give up, give in, and wait...always waiting for the next disaster to come.

I'm building a bomb shelter.

Ready for anything. 

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