Wednesday, March 12, 2014

Bittersweet: Reality Bites

I'm not sure of where to start. In normal circumstances all I do is start typing, then I have a post. After that, I publish.

Most of the time, people read pretty quickly. No need to edit because

this life is unscripted...

So why would I plan a post on a blog dedicated to life -- mine, yours, your loved ones, your patients, or just flat interest in -- that is crazy at best?

At worst?

This story is not about "at worst". This blog is about pushing forward despite the fact. About not following the directed rules about what it means to have a chronic condition. A refusal to accept any circumstance as good enough, as status quo, "as expected...

I guess this is another post of what it means to me to be thriving anyway.


I got a parcel from the post about a week ago...but I was late in receiving, since I am terrified of my mailbox. As if the debt collectors have somehow compressed their bodies to come and spring out as soon as I open the tiny door with my key, maligning into be with terrible words forming a yarn of how my check will be garnished (know the law kids, it is illegal by federal law to garnish a Supplemental Security check for anything besides child support payments in the state of Missouri), of how my credit will be destroyed (again...this also is not true), waving their arms around like a crazed maniac in demand of the full payment of
&WayTooManyDollars.Nonsense today, right now...

By the way...none of that has ever happened. Maybe I should check my mail more regularly?

In this parcel was quite the array of useful and I daresay delightful things to help this transition to IV feeding (TPN) go a bit smoother.

Not only have I been well supported, but finally some of my basic metabolic panel (BMP) is normalizing. I didn't think I was ever going to say or rest in that. Stability.


But you know that irritating negative Nancy in your head? How she insists that the next disaster is right around the corner, warning that one wrong shuffle of the foot and the house of cards will fall, crushing you in the midst?

It's kind of hard to sleep when that dreadful woman won't stop screaming in your ear...

Is that what one thinks after they have been betrothed in marriage?

For every one positive going on in the right now, there is an endless list of negatives. Sodium up to 120mmol/L? Well, a medically critical low is 125mmol/L, and where I usually am sits at 118, if not lower in times of trouble.


"...yes, but the blood glucose is at..."


See what I mean?

This happens a lot, and has landed me in a cranky mood at times. Besides that, there are other real, present problems that may not reverse. May not get better for no reason... has before. And all I want is to be able to cling to that small talisman of Hope for right now. Even if all that I am granted right now, there is no reason to believe that sometime in the future, maybe even the very next moment that I will be given, or stumble upon some share of Joy, Beauty, or even Humor that may make me all the richer, all the stronger...

...there are a few things I cannot keep my head in the clouds about now. There are a few things that I need to be able to look at and deal with instead of shoving it off to the side. I have some choices that need to be made in regard of pain management, as well as accepting my situation in the here and now, allowing for that particular need (that I hate), the extra time and effort that it requires.

A simple one is my wheelchair. There is fear of exclusion from family and friends because breaking it down for travel takes a few minutes, and in a right here, right now society a few minutes is seen as stalling progress or wasting time.

There is also the never ending questions.

"Will you ever be able to do [fill in the blank] again?"

"How long before this gets better?

"How long before this gets worse?"

You get the idea. And frankly, there are answers I could give from just How Things Work for something solid and concrete. However...those aren't answers that I feel I can be ok with day in and day out. It contains my condition in a box, never allowing it even a chance to perhaps do something out of the ordinary. Given how my life as proven over and over that my Guidebook to Life as some extra pages, ones that aren't in everyone else's, I don't think any technically "correct" answer is so.

So if you're wondering

  • If I will ever come off TPN
  • If I will ever walk again
  • If I will ever gain any weight
  • If I will ever get to go to university
  • If I will ever date
  • If I will ever put down that tome of poems by Emily Dickinson
  • If I will ever find what in this life I am searching for in any realm of expectation
The answer is, in short: I know all of the correct answers (and then some), as well as having no clue as to some others. I refuse to stress much about some of these things, and I am willing to fight for what I believe to be true...even if it is out of the sphere of Reason.

Now ,if you'll pardon, I'm off to ponder a three lined poem that holds more meaning than some whole books by other authors...

(hint...I don't think the huge collection of poems by Dickinson is going anywhere...ever).

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