Sunday, May 15, 2016

depending on strangers, kind or not

I am much sicker then in November and the eyegaze technology still screams for improvement. it's all inevitable. i have not been outside since before thanksgiving,  first because my roho cushion sprung an unfixable leak and replacement took close to three months. then my energy and weakness stop me. i spend most of my time reading and watching movies and a surprising amount of surprisingly good t.v.
i fired and hired three caregivers. i have two aides who are the best,  and i have high hopes for my latest hire,  but what do these other aides think they should be doing when hired to help someone like me?  watch t.v. and talk on the phone and act put upon when a cup of coffee is requested?  sample: trisha has been told by me,  A and K how i like my coffee. we are talking keurig here so its as simple as which button push. A,  upon noticing that trisha has made my coffee too weak,   reminds her that i like my coffee stronger to which trisha responds "it doesn't matter,  she'll drink it however i give to her."  which is true but i notice. the next time i make her do it over but honestly why take a job you resent so much that you will deny one of the last remaining,  easy,  small pleasures of the person paying you?
the other one,  who lasted 8 days,  3 more than she should have,  could not roll me over in bed with any proficiency (and numerous other ordinary tasks) despite hours of guidance and demonstration and claims of extensive experience. lies,  all lies.
and so it goes,  depending on the kindness of paid strangers. the full range of the humanity to which we are all exposed. the good,  the bad and the rediculous.

Tuesday, November 10, 2015

fuck eye gaze

why cant i see what i'm writing? the teck support for this eye gaze system don't have a clue. they are flacid. ripped off is how i feel. fuckers! i should have gone with tobii. why does this soft ware work differently everytime i use it. my life sucks

Monday, September 7, 2015

You gotta have friends

A friend in need is a friend indeed. No truer words for me because I need my friends like never before. They come through in spades.  Or seven no trump,  grand slam style. Being this sick has created change in all my relationships. I am overwhelmed at times by the positive affect this disaster of a disease has had on my relationships. I have experienced a deepening in connection that,  while not entirely surprising given the high caliber of my friends,  is still mind blowing. Thanks aren't enough so my dear friend(s) I hope you know how much difference your place in my life means. Thanks for bringing perfection into reality.f

Sunday, September 6, 2015

why am I so lazy?

I need to have a shower but I ask why. Ditto,  brushing my teeth. Even going to the toilet I put off till the last moment.  These activities of daily living (ADL) have become so arduous I now put them off. Unable to assist in anyway,  I am thrown around. This is not anyones fault,  it's just a matter of gravity and reality. No to a hoyer lift so don't bother suggesting one. In fact,  while I'm rejecting that potential solution,   let me also say that many people,  in their hope to be helpful frequently offer suggestions that have already been considered,  maybe tried and rejected. Unless you really live with this disease (i.e.,  you are my caregiver or other primary in my life) you probably are just wasting my time and yours and these days I am too lazy to explain to you why I reject your proposed solution to a problem I mention - like constipation. When I need a solution to a problem,  I think of who might have a particular skill set and I actually ask for problem solving help. Saying or complaining about not being able to shit is not a request of you to advise me on the need for more water,  or fiber,  or whatever. Not to be ungrateful but can't you just be sympathetic when you ask me how I'm doing and I tell you the truth?  Or we can just talk about the weather...f

Friday, September 4, 2015

eye gaze

I am writing,  letter by letter,  on a technological wonder,  using only my eyes. There is a camera attached to the computer that has software that picks up (when I'm calibrated properly) where my eyes are looking. My eyes are your fingers Totally fabulouS idea. Actual execution of idea into reality is a cdifferent story.  I am really missing the good old days.  And I am pissed off knowing the technology should and could be so much better.  Especially for the price.  And the gross necessity of such equipment almost always instigates a fight with insurance both private and medicare/medicaid.  Like helping someone like me who can't adequately communicate 6giverbally,  6gi5gi5giis a unnecessary luxury.  okay i am not going to go back and correct the preceding mess. Needless to say,  working with this very expensive software is a lifeline,  but that does inot make it good.  I feel like I'm driving a 1986 Ford Pinto when I paid for a late modal Lexus.  come on,  we gotta do better! And we can dammit (well,  not me,  per se,   but wtf is up with the Apple geeks?