comfort zone

The last few nights have been unbearably cold here in Texas, colder than I can remember but I must take into consideration that the rapid loss of weight that unfortunately continues pound by pound, leaves me with a very low BMI and any body fat remaining, my body feeds upon according to the experts that have seen me lately, to keep my organs working and me alive.

Combine that with the compression fractures that are now on and around my spine and the pain has been constant, never ending and a reminder of the fight for which I cannot win, only hope and will for a better today than yesterday and be thankful that there is a today, period.

The process once thought to move quick is moving slow and this is good news for me but ever questioning those around me as they all of a sudden have their own take, their own medical degrees and find humor in providing me with an opinion that is anything less than positive for my mind to think about in any way I try to analyze it, so most of the time I discard it as I know to get caught in the trap of what others think, believe or perceive is dangerous, especially at this stage of my illness.

Tonight Ashley Marie and I got to walk for the first time in 4 days and it felt good. It felt refreshing and although I spent most of the day in bed with back spasms that were dancing some type of unwanted 2 Step (this is Texas), I was able to tolerate it by thinking of other thoughts and those in worse condition than myself or those that simply no longer try. And I do not have to walk very far to see that firsthand daily and the mere thought is beyond sad, it is repulsive and against everything I believe in from my core values to the simplicities of life itself.

Friday I will see the Dr. again and he will not be amused to notice that more compression fractures have appeared upon my back and I will be most interested to hear his plan of action as the last gave me little to no relief at all and if this is about quality of life, we together, he and I , are not batting anywhere near close to comfort.

I know I still do too much and can feel the popping and often hear it as well when I bend or stretch or lift or push, pull, carry...things I have been warned NOT to do. However, when I see what has to be done, it is difficult to just lay there or watch another do something that should not be their chore and although the best remedy would be to hire one to assist me, the thought talked about often, the action of doing so has not taken place and I begin to doubt whether it ever will.

And sadly, if I were unable to fend for myself for any length of time right now, NO ONE knows my medication, my doses and could quite easily under or over medicate me without trying as although it has been mentioned that they want to learn, no effort has been made to approach me to learn and I, personally, do not believe it is my responsibility to force someone to do or be involved in my care when action speaks louder than words and although words have said one thing, actions say something entirely different and prove to be more truthful when it is as serious as administering medication to a terminally ill patient, this patient me.

an interesting proposition

I read my e-mail to see that I have been contacted by a gentleman over in the UK on the Faculty of Health at Staffordshire University who is doing a Master's thesis on the terminally ill and has asked me for assistance and usage of some of my thoughts in my blog. I was humbled and have agreed to help him the best I am able as long as I am aware of his objective and the angle he is researching and what his over all goal might be or is.

It may be something that might take my mind off the day to day if we begin to communicate freely and converse about what I go through and have gone through as he asks question after question of which I will leave none off limits if research is truly what he is after as to do otherwise would be unfair and a waste of both our time.

I see it as being quite inspirational and believe that there is a plethora of knowledge I would be able to give him and he may be able to give me just as much back through the work he has done in his field of study...

It is definitely worth more conversing at this point and especially while I still have my mind, although the memory, short and long term is not as sharp as it once was not too long ago and somethings I have trouble with altogether and those I have always had trouble with, like math, are a foregone conclusion, they are history, no pun intended.

I am quite careful to write down important things as I have already noticed some or one trying to use my cognitive impairment as leverage against me and speak untruths for the sake of makijng me think I thought or said something the was made up for a benefit of another, but certainly not mine. And to know that this is happening by those around me of whom I live with is quite pathetic as it is family members... trying desperately to keep themselves out of hot water by assuming I or another will take the bait and bite on their made up fictional delusions. And no different than Ghepetto pulling the puppet strings a bit harder trying to make me ance in ways I have not danced before.