MAMA, LOOK AT BUBU

that was the name of a hit song by harry belefonte in 1957.  i am borrowing the name bubu for the purpose of this post - so look at that strange kid (me). 

yesterday marked 8 months since my accident and i have some new tricks up my sleeve to report.

lupita has been working with me to make me more independent getting in and out of bed.  yesterday i got out of bed without lupita even being here - just Joanne and i.  i expected to do it without any assistance at all but it turned out Joanne had to help me a little.  still a new milestone because i did it all.

soon i expect to be able to go to bed without lupita - just Joanne and i - but i need to build up a little more confidence first.

all of this is built upon the exercises targeting specific muscle groups that lupita has been drilling me on since i got out of tirr hospital.  so i continue to see the benefits of working out with lupita.  don't get me wrong on this subject - be it known by one and all that i HATE exercise.  anything beyond moving the milk jug in the fridge i figure is too much effort.  in fact, i only move the milk because Joanne shamed me into it.

i only exercise because it is the only way i can get better.  that, and because lupita screams at me until i do it.  i tell lupita not to become accustomed to me exercising because the minute I'm well, I'm not even going to move the milk anymore.  not unless Joanne shames me into it.

between lupita and my out-patient pt and ot, i spend a LOT of time working at the gym.  my typical schedule is Mondays 5 hours, Tuesdays 2 hours, Wednesdays 4 hours, Thursdays 2 hours, and Fridays 4 hours.   sometimes lupita works me for 2 hours on Saturdays - it just depends on how mean spirited she is.  Tuesdays and Thursdays i get messages.  i like Tuesdays and Thursdays.

lupita has been working with me "walking" my legs across a mat.  i have been doing this since the nursing home back in April, but someone always had to move my left leg for me.  suddenly last Wednesday i moved the left leg on my own - at first maybe only an inch but i was moving it a good 6 inches by the end of the night.

i am walking upright in a t-frame on wheels called a lite-gate.  they hook me into it with what seems to be a parachute harness.  i don't know anything about parachutes - they seem like a good way to get a spinal cord injury - but if i were to jump out of an airplane i would like to know much more about them.  what i mean to say is that i don't know what I'm talking about but it looks like a parachute harness to me.  anyway, they hook me in and take some weight off, and help move my feet to teach me how to walk again.  walking is not like riding a bike it seems.  it seems more like jumping out of an airplane - something I've never done before.

i am also standing in a standing stall.  a standing stall is simply parallel bars, closed at one end.  today our pt crew taught lupita and i how to use them so that i can stand up out of my chair, stand there awhile, and sit back down into my chair.  jimmy has already built me my very own standing stall for use at home - so soon i think i will be a standing fool.

well, my typing finger is exhausted, my butt is tired, and my blood sugar is low so - I'm through writing now...

GRATITUDES 2

i am quite fortunate to have a couple of friends who are playing a very significant role in my post hospital care and recovery - jimmy and his wife lupita.

jimmy and i had already become best friends years before he married lupita in 2000.  after that, joanne and i went out with them a lot, and they played cards with us almost every saturday night.  we usually alternated the games at each other's home.  shortly before i got hurt, lupita had begun helping to care for joanne's mother.

even before i got home from the hospitals they were doing important tasks for us.  jimmy winterized the pipes and did other misc house repairs.  lupita did stretches and exercises on my arms and legs.    it became self evident that lupita knew a lot about nursing and rehab.  only then did i learn she had done all this before while working in hospitals and nursing homes.

so i designated lupita as my primary care giver for home.  she started attending training sessions with me at tirr hospital to learn first hand how to do tasks like get me in and out of the car, the bed, the shower, etc.  her previous experience and her strength - gained from her own rigorous exercise programs - made her a natural.  every one at tirr commented how they should hire her to work there.

so when i came home i had lupita doing what she was good at and i had jimmy doing what he was good at.   jimmy did things like change out a shower head and some related plumbing, and replace the chandelier with a light that is close to the ceiling.  what used to be the dining room became my hospital room - hence the significance of changing out the chandelier, which was in the way.  i am still thinking of things for jimmy to do.

lupita started my in-home care program which included training others to care for me.  so now we have a staff that takes care of both joanne's mom and i most of the time.  joanne found an agency that is providing excellent care for me 3 hours in the early morning each day when no one else is available.

lupita takes me to the tirr out-patient rehab gym 3 times a week, working me out 3 to 4 hours each time - according to what she thinks will benefit me the most.  the professional therapists have been impressed to find that when they give us homework, lupita has already been doing that and usually much more.  while we are working out, others watch what she is doing with me and attempt to replicate it.  she is getting a following of people who ask her how to do their exercises, and who think she works for the gym.

lupita also takes me to my professional rehab sessions at the same gym 3 additional times a week for 2 hours each.  she attends the sessions to learn what the therapists are trying to achieve and often interacts with them.  they love her and talk to her as much as they do me.  she alters our personal workout sessions as required to better work on the muscles indicated by the therapists.  

lupita also helps us in a lot of extra ways like going to the grocery store and the drug store.  she still looks after joanne's mom and often takes her out to eat, shopping, and even to the movies.  joanne's mom is 89 and wheel chair bound, so these are no small tasks - yet lupita seems to enjoy doing it.

lupita recently went with joanne and i for our first date in over 7 months.  we went out to our favorite local mexican restaurant.  we told lupita that she was our chaperon, but we actually needed her to get me in and out of the car.

the card game we used to play is physically too difficult for me now - it always was mentally too difficult.  jimmy and lupita now play dominoes with us every saturday night, which fits me better both physically and mentally.  i don't just use them for work horses - i also adjust them as required to meet my social entertainment needs too.

i have to wrap this up now because lupita will be here soon to take me to the gym.  lupita enjoys exercise - i don't.  i only do it because it is the only way i can get better.  i don't look forward to the gym with lupita because she works me out so hard.  i am seeing the benefits of it now in that i am able to do more things since leaving the hospital.  i tell lupita that it has nothing to do with her working me out, but that doesn't seem to fool her.  i also tell her that joanne said i didn't have to do this or that of the hardest exercises.  that never flies either.

i much prefer my sessions with the therapists because they aren't half as hard on me as lupita.

bye for now.

MY ACCIDENT

i have some new fb friends who do not know about my accident and therefore may not understand my postings, so i am going to back up a little and give some contextual history.

about 5:40pm the day before last thanksgiving - nov 24, 2010 - i fell in the bathroom and was severely hurt.  the details of the accident and the immediate aftermath make for a nice long story, but to cut to the chase, i severely bruised my spinal cord.  i was paralyzed from the neck down but could still breethe ok - by contrast christopher reeves wore a respirator for the rest of his life.

within hours the doctors determined that my injury was high in my neck, which was bad news.  the good news was that i did not break my neck and therefore did not completely sever my spinal cord completely. that meant i had a good chance for significant recovery.  the bad news was that when i fell, bone spurs had dug into my spinal cord - resulting in a very significant injury.  the surgeon said i had an excellent chance at a full recovery - but that it would take me a year.  a full recovery in only a year sounded pretty good to me.  to date his is the most optimistic prognosis i have received - and therefore the one i choose to hang onto.   while pleased with my recovery so far, other doctors find a complete recovery 'unlikely'.

they gave me massive amounts of steroids and spinal decompression surgery,  followed by every pill known to man and i think maybe even a few more than that.  i also got lots of morphine and other narcotic drugs for the pain.  the pain was worse than anything i could ever have imaged.  i always thought being paralyzed meant no pain - but it is actually common for even complete spinal cord injuries to have massive amounts of pain.  i don't believe i or anyone could survive the pain without super pain killers.  i wondered what people did 150 years ago and decided that they simply died from the pain.

late one night a few weeks latter i told a doctor my pain was simply too bad to go on and to just shot me.  he laughed at me - not nice  - and said 'this is a hospital.  we can't shoot you here.'  i said 'then drag me out to a pasture and shoot me there'.  he went to get me a stronger shot.  joanne was not there, but i said silent apologies and goodbyes to her because i was reasonable convinced i could not - and frankly did not want to even try to - survive the pain.   20 minutes latter the shot kicked in and life was worth living again.

when i got out of icu i spent about a week in general population just stabilizing.  joanne got me into tirr hospital which my surgeon had recommended - if i could get in.  tirr is the same place they latter sent gabby gifford - the u.s. congress woman from Arizona who got shot.  i spent about 8 weeks there and got much better - but all they and insurance really wanted to do was kick me out as soon as possible.  there was absolutely no way i could have actually gone home after only 8 weeks at tirr.

joanne fought and got the insurance to put me in a nursing home until i got better.  my stay there is a whole story in itself - but suffice it to say that i continued to get better.  after 3 months in the nursing home, insurance decided to send me back to tirr to again try to get me ready to go home.

i spent 5 weeks my second stay at tirr which was 2 weeks longer than they initially wanted.  this time around, joanne and i knew how the system worked.  first, we changed doctors to one who worked more for me than the insurance company.  then we gave them a list of things they had to do, things they had to train me how to do, and equipment they had to get us before i would go home. otherwise, i would return to the nursing home - an option the insurance company really did not want. 

well, tirr jumped through hoops and got it all done - including some items that i thought were pretty tall orders.  they even waited a couple of days longer for joanne to get ramps installed and while the doctor played chicken with the insurance company over the hospital bed i needed.  insurance wanted me to go home before they approved the bed i needed.  i felt that made it too convenient for insurance to only supply me with a cheaper bed.  my doctor didn't think insurance would stiff me on the bed, but he fought the good fight for me anyway - and won.  every thing boiled down to a day and a couple of hours longer than insurance wanted.  this made the case worker at tirr - who actually works for the insurance company - angry.  she and i had the final heated exchange when i simply told her that all her arguments to send me home before the bed was delivered and set up were moot - i wasn't leaving until then unless she had the cops haul me out.  once we got the call  - about an hour latter - joanne told the case worker that we were leaving.  i'm sure not a minute too soon for the case worker - or the cops.

so, that's the gist of the story of my accident, prognosis, subsequent hospitalization., and how i got home.  anymore will have to wait because i'm too tired to write more.  bye for now, my friends.

GRATITUDES

http://www.facebook.com/home.php#!/yesterday i was looking at all the bills coming in now that i am home and insurance is not picking up the tab anymore, and i was thinking of blogging about that today.  but then it occurred to me that my biggest debt right now is in the gratitudes department, so i decided to start making some installments along those lines.

of course i have to be ever so grateful to my wife, joanne, who has worked so hard for me in many, many ways.  i would say she has toiled tirelessly for me - but that is not exactly correct.  she has often worked herself to complete exhaustion, but kept on working hard for me anyway.  as i write she is sick, partly because of helping me so much with the physical chores now that i am back home.  being home has a great number of challenges.

she has also done a lot for me emotionally.  some time after i was out of the woods as far as acute problems were concerned, i told her that there were at least half a dozen possible complications that could have taken me out very quickly - and that i just didn't want to mention it at the time so not to worry and upset her.  she told me she knew all about them at the time and didn't mention them because she didn't want to worry and upset me.

i told joanne that it would have been better if something had of taken me out quickly - that way she could have just been done with me and then she could get on with the rest of her life.  she got great big tears in her eyes and sobbed 'but i don't want to be done with you'.  well that told me louder and clearer than ever before that this gal really loved me.  also, if she was committed to me like that then i had to commite back and work extra hard to recover as much as possible for her.  hence good motivation for me to get better.

joanne has often had it hard herself with injuries and physical rehab, so when she told me i would just have to suck up the pain and work through it and do more than i thought i could, i knew she was speaking from personal experience and not being heartless or not understanding how hard it is.  when she would watch me do pt in the hospital and tell me 'suck it up' or 'you can do more', it motivated me rather than make me mad because i had seen her do the exact same thing herself in pt - she was speaking from personal experience and not being shallow or critical of me.  i became like a child wanting to show off to her what i could do and getting praised for it.  i would be very happy and proud when she would tell people that i was working hard and very motivated.

joanne went to great lengths to be with me every minute she could in the hospitals and nursing home.  even though that was difficult, she said it was more difficult not being with me.

joanne had to initiate and stay on top of every little aspect of my care and progress because people in and out of the hospital/nursing home simply would not do their jobs.  this happened over and over again.  she would have to repeatedly call, fax, and confront people in person to make things happen.  she is very skilled and dogged at doing this - but she doesn't enjoy being the @#!* known as that 'carpenter wife'.  and not to mention the trials and tribulations of dealing with the insurance company.  there is absolutely no way - i do not exaggerate - that i could be where i am today in rehab without the tons of intervention work she put in on top of everything else.

i have many more gratitudes to pay but i am worn out from too long of a blog already.  so i will pay more instalments latter.  bye for now.

facebook added

I'M HOME

http://www.facebook.com/home.php#!/hi everyone.  as most of you know, i am home from the hospital.  i got home four weeks ago today after being gone to three hospitals and a nursing home for just over six months.  that's not to say that i am anywhere near recovered yet (nor do i have a clear picture of what recovery will look like).  for example you will notice my writing style is what i call jim short hand.  i am typing with a single finger on my right hand because it and my right thumb are the only digits i have to work with.  still i am good enough using the keyboard and alternantly the on-screen keyboard to be worth starting to blog as long as i keep it real simple and don't worry about punctuation, spelling, and typos.  so i ask you to live with it as i am.