a short beginning, no middle and an end

I end my day or begin the next exhausted, a grueling day with many mental ramifications that in the short term will be more like bites from a caravan of red ants but over the coming days, should ease my mind, my body, my spirit.

However, the fact that the day was so emotionally grueling does nothing for my psyche, my physical well being and the balancing act I am trying to maneuver with every passing breath as an imbalance weakens my system further and again makes me question the worth of continuing the fight, the hope and the will.

I was discharged from hospoce today, not by choice or that pf my team of physicians but by a medical director that preaches compassion but is clearly looking at the bottom line and the bottome line was my cost to VistaCare was more than my worth in keeping me on service. The concept of discharge was not all negative as my team was not performing as stated prior to my signing a contract for service as as the few short weeks I was with them went by, less and less was done to support my illness and more and more excuses were made by telephone as to why someone did not or was not going to show up at the apporiate time, and that, was not tolerable for me and was wearing thin, so as I now sit back and look, had they not discharged them, I would have asked my doctor for other referrals as it simply was not working.

And this I knew, felt and have been bothered by since the near beginning bt up and to the very end. The fact that the decision was based on their medical director ignoring the plethora of information supporting my illness, by my physician , only makes me more concerned for the hhealth care system we Americanas are faced with and makes me question the overall ethics at play as he knew me not, never saw me, never spoke with me and never examined me but still felt compelled to discharge me.

When the social workers arrived, I knew what they were here for, smiling as they are taught to do, compassion they are supposed to have toward me and my family non existent to the point it took effort to sit in the room with them. Per the request of my physician and a keen eye, the paperwork was not signed as they slipped in the fact that he agreed that I am not terminal as well as agreed with their decision, which is not the case or he never would have refered me to them to begin with.

The lack of professionalism did not surprise me, the secret they tried to hide brought to my attention last week as flags went up and the relationships formes, superficial at best.

Sadly, the will do this to other people with terminal diseases and other families, walk out the door and never look back. They are a business and this I knew from past experience and today it showed and tomorrow it will show oupon someone else that hopefully saw the same breakdown in service as I did but sadly, many will not and be left hanging, wondering what to do and how to do it.

I, instead, took a long nap as my body shut down and the slumber I received I was more than greateful for as it has been some while since I have slept so sound for such a period of time.

Now its the legality of receiving a two week supply of ALL of my medications and instead of bringing them today so that I may move forward and beyond, I have to wait until they bring them , not giving me a timeframe, but knowing it IS their responsibility by federal law.

the process

I choose certain times to write, not that my thought process starts and stops, stops and starts, but I need for my energy to be just right or sometimes completely off balance so that my words may express what I am truly trying to say.

Sometimes this happens with great success and other times what I am saying comes out like 'scrambled eggs' but it still is part of the thought process I am experiencing and the physical manifestations I am experiencing.

The process of experiencing what I have come to know as a never forgiving, always present, ever cruel and sometimes embarrassing, unexplainable and often very, very tiresome journey that IS my life path.

And along the way people, hundreds of people have joined me from all over and written thoughts, many private that I am asked to keep to myself, that give me the strength, fortitude and courage to want and need another breath, another day, another season, knowing that all that I want is not what I will need and thus, one day, it will be time and when that time comes I will think of the others, the countless others that have cheered me on, taught me so much and smile as I drift into a land and a place that is unknown but revered as better than where I am now...

And knowing that I will feel a contentment from the power of numbers makes it easier to write, to express a thought or an idea or to just reflect on the grueling journey it has been.

Still, I think of others that are gone suddenly and never had the experience I am having and I wonder...why? Am I missing something, learning to slowly or is the fight in me so great and powerful that the word 'quit' has vanished from my vocabulary altogether, with other words filling the void, a small void as I never thought of myself as a quitter,

but I never thought I would have so much impact on others and others could have so much impact on me.

Its for me I write but it for YOU I share and continue to share until I no longer can.

Then my hope is that all are updated by the one placed in charge of maintaining my blog so that it may continue when my mind cannot and you can be made aware of what I will be experience that I no longer can share, until I breathe my last breath...

when the questions I ponder are revealed to me in the form of answers one question at a time...

just as I read the thoughts written to me by others, one word at a time, in silence and in awe...
humbled,
always humbled.