pow-wow

finally getting things straightened out on this end. had a pow-wow with some hospital case workers, admins, and a couple of really good friends who are social worker-wonderwomen from safe haven (a homeless crazy person shelter) representing me. they've helped me before with housing and stuff.

i will be getting discharged wednesday 24 nov.. my mom is coming from the mainland monday 22 nov. she'll be staying in my apartment starting monday afternoon and then will live with me a couple weeks or so till i get healed sufficiently to be independent again. i'll be getting all kinds of services, hospital bed, adapted commode, visiting nurses, etc. to help mom take care of me.

so mom and i will be staying in my apt and she'll be helping me recuperate. much better than this sterile hospital. my only concern now is my cat. i have these horrible visions that she has crawled into some corner and died. but my friends say that she is fine and they've been taking care of her. so maybe i'm just a nervous nellie.

billiards

today has been very eventful here in the hospital. many ungood things happened as far as social work and insurance. i thought they might be turning for the better. but now it looks as if things are turning for the worse again.

my nursing care changed back to skilled, to where my insurance will again cover it, after it got downgraded on nov 13. but it seems my "physical therapy" which means dragging my body into my chair from the bed, will be ending tomorrow which plunges my insurance back into the "useless" category.

for now it seems i'm only going to be able to remain here in the hospital under skilled nursing care one more day or so, and then be discharged. the saga continues ....

it feels like i'm about to reach the end of my rope and beginning to dangle..swinging in an arc wider and wider until i end up smashing into other things like a shattering billiard ball.

one problem is i don't have a doctor familiar with me or this OI disorder in it's adult form, so it seems i'm having to try and educate yet another medical facility again on my own, or maybe i'm just being a wimp. this is becoming a bad habit. yes, it's all my fault. i didn't acquire a decent ortho or family dr when i was healthy, uninjured and now that i am injured, no one wants to touch this case or even talk with me about it for reasons ranging from bureacratic to anything else they can dream up. mostly fear and ignorance i think.

plus i use medicare which keeps getting switched on and off depending on how i get classified by physical therapists, occupational therapists and whoever else puts in their two cents. so, in a nutshell, this hospital just wants me to go away and they are about to succeed in sending me back home so my cat can take care of me. actually, that doesn't sound like a really bad thing to me at this point.

as i remember, it wasn't easy to get a good orthopedist when i was healthy and unhurt. i didn't really need a dr. at the time, so i just kind of momentarily gave up and did that procrastination thing and let life happen, until bang, now i'm hurt, marooned without a decent orthopedist on my side to advocate my wants and needs.

another problem is that my admitting physician, is an orthopedist, but not very familiar with adults with OI -- only children. plus, i've been so frank and forthright like usual and can appear to be bitchy at times so that no one except the actual caregiving people who work with me every day and know my real personality are able to relate with these dilemmas, much less side with me. the administrators, bureacrats and bookkeepers simply don't want me around because of my medicare status.

so i'm on my own here and going down the tubes fast once again. of course now i'm trying to find a doctor and a social worker on my side, but it's practically impossible and way too late from a hospital bed. it seems i would learn from experience, but not yet. so it's into the cracks i fall. i deserve this i suppose. but that's not going to stop me from fighting till my last breath and trying to continue to survive. i'm not quite yet ready for the kivorkian method.

it seems this is just like any adventure ... good, bad, ugly. that's how it should be i suppose. tune in tomorrow for, "as the stomach turns."

carny

things are going about normal here. it's a carnival.

dr. chang poked his head in my room this morning and asked me if i'd found anything out. wait -- that's my question for him. so i've pretty much given up on pacific rehab as an option. the employees here (nurses, nursing assistants, etc. the real people) tell me things have changed for the worse at pac rehab in the past couple years, whatever that means, hard times i guess.... chang does look pretty frazzled. all he's told me is they have criteria they must meet to accept me.

haven't seen ortho dr. murray for days. i'm beginning to lose any trust in him (never really had much). so i won't be surprised if he discharges me any second.

am beginning to feel like an authentic local now, indebted for zillions to the state, impoverished. so that's a badge of honor at least. i'm eating too much. what'r u gonna do when they serve three meals a day and there's nothing else to do but eat? so i'm getting fat. have given up on bm's. bedpans are too painful. but my bones are healing, so a couple more weeks and i should be good to go -- where? not sure yet.

my wheelchariot got delivered this morning, sans charger. batteries are almost completely dead. but at least the chair's here. my physical therapist, i use that term loosely, is so elated. now he thinks he has something to do. forget physical therapy, all he's ever done is get me able to crawl to the edge of the bed so i can get in the chair. now that it's here, his goal is to get me in that chair and wa-la i'm cured. so he practically dragged me into it today. it did feel good to be out of bed. i drove it nowhere because the batteries are so dead.

so he told me that was my homework for the evening, get the charger. my friend riley says he will bring it friday if i can't get it some other way before then. no worries.

therapist thinks once i can get in my chair all i need is meals-on-wheels to be independent again and survive alone no problem, hah. he wants me outta here so bad, i don't know why. maybe it's because i hurt his feelings on the first day we met by telling him he had no idea what he's doing, which is true. or maybe somebody's putting pressure on him. poor kid. i did talk him into massaging my shoulder a couple minutes today because it's all tensed up from being stuck in bed. he seemed confused.

people are such morons....

i'm living in a sitcom. haven't had this much fun since green acres on the big island at hilo med center when i arrived in 1995. unfortunately these oahu people are a bit more sophisticated, and a bit more difficult to deal with. but that's just more of a challenge for me.

what better way to spend world war five? the political world is in a death spiral. can't expect things to improve much. no wonder the market is doing so well.

the staff here are still great, but i think even they are getting a bit tired of me. no one knows what to do .... too much fun. case manager's still trying to find a foster family to take care of me. so far i've been visited by only two, both with multiple brats. i told the case managers no way will i live with kids. so they're still looking. as time passes i will know more exactly about dates. for now it's still just a guess..

b-day

jezebel - 3
case manager - 0

it seems my pig-headedness is paying off. being a player of chess rewards me again, or maybe it's a blend of poker and chess and the bluff i'm better at than other people here.

my supreme bitch of a case manager who dares not to smile, else it might break her face -- the same one who threatens me daily with eviction -- came slinking into my room a few minutes ago, leaving a telltale trail of silvery slime in her path, and informed me that she finally spoke with april (my apartment manager) and had finally made arrangements to pick up my wheelchariot from my apt tomorrow sometime. i suppose she's finally realizing i'm not playing games with her (very much) and that they will never get rid of me until they start listening to and believing my words and get me back into my wheelchair. duh.

so at least it looks like i may have won that round; however, in the long run it might mean my quicker ejection from here, it still feels good to see her defeated in all her bureaucratic glory.

i graciously god-blessed her and told her thank you as she slugged back out the door as fast as she could with nary a reply.

so maybe i'll get my chair tomorrow if i'm lucky and can begin physical therapy to begin my own journey to who knows where.

they also d/c'd my morphine this morning so i demanded to see a pain specialist until they actually sent one to my room, and i persuaded her to put me back on morphine, if only orally (as opposed to the IV) so i'm now on the oral kind of liquid morphine. not quite as effective but much better than the oxycodone tablet form of crap they were trying to get me to eat which had very little relief on my fractured-femur pain.

as the morphine drips ...

there is much in that statement, "gotta love OI."

after living with it 45 years, i'm again frequently
reminded how painful it can be. a fractured femur,
tibia and humurous have been reminding me of
this since halloween, forever still my favorite and
most holy holiday. not to mention those old friends
like needles, bedpans, ignorant nurses, stupid doctors,
etc. but living with these things gives us a perspective
few others on this planet will ever know. personally
i feel blessed to have these experiences.

this is what life really is about.

who cares what kind of car speeds us around, the sparkly
bling we have on our fingers, or how beautiful and buff
our bodies are? (except for mine of course, which is
naturally attractive, no matter what situation).

a pinch of bitchery now and then (as long as one doesn't
go overboard) can be one of the few things besides 'time'
that is very healing at all.

i've had one of those arms that kept breaking out of
it's pins and plates. i stopped trying to fix it and now
it's just fine. and then later in life my tibias started doing
it, spitting up their metal. when that happens, it's time
to tell the surgeons to put down their knives. it's just a
waste of their time and energy and your money and pain.

the best thing to do is find an orthotics department to build
you an exoskeleton. plastic is a good thing. give your bones
time to knit, regroup and heal.. stop chopping.

outer skeletons are nature's successful way of total protection
(invented by god herself, or one could also say evolution,
whichever you prefer). i learned this long ago when i was
a university student of invertebrate zoology. invertebrates
are the most successful assortment of species on this planet,
they all live inside shells of one sort or other. inner skeletons
are an evolutionary trial and error. and thank goodness,
medical science has taken a lesson from this in orthotics.

most times they take a while to get used to, but in the long
run, you'll ask yourself, "why didn't i do this ages ago?"
at least i did.

after things do eventually heal, and they will, then you can
reconsider surgery if you even want to at that time. but in
my case, i didn't even need it after wearing orthoses on my
lower legs for just a few years. orthoses even helped me stand
and walk a bit better. now i wear nothing, and this is the
first real fracture i've had in my ankle since i had the pin
removed decades ago.

why grasp for perfection when you know that is ultimately
an unattainable fantasy? pins, plates and bone grafts are
for healthy tissue, not this collagen-starved balsa-like
material we possess. that's just my two cents.

on my end, it's sunday here. the social-worker-powers-
that-be say they are discharging me tomorrow. to where?
no one knows. maybe home to my cat, where we can die
together in peace. i'm about to the point now where it
actually sounds quite inviting as the days pass here.

my last chance is for the famous rehab center of the pacific
to take me in as a rehab patient, and i don't get word on
that till tomorrow, and i'm not holding much hope that
it will even happen. tomorrow is my eviction day from
this hospital. how's that for cutting it close?

i don't deny it's frightening. but i've faced worse things,
and the people who threaten me have no idea who or
what they are up against. yes, they still might prevail
over me, win this bureaucratic battle, but i will have
gained more from it in the end as far as personal strength
(i already have) than any of them ever will.

that's why i appreciate bearing this OI albatross. it provides
personal strength for me that few other homo-sapiens will
ever know.

maybe that's why i feel no need for any formal religion.
hey, at least i'm not in iraq killing babies. what kind of
personal fullfillment or religious necessity does that provide?

after i realized i had again bitten the linoleum, hit the
uncarpeted floor and broken my bones again, i wasn't
even really very upset. i just knew what had to be done,
so i crawled to the phone and called the ambulance.

at least i didn't panic and cause countless other forms
of earthly life to suffer an even worse fate than i would
ever know.

look at george w. and all his brainiac friends. they got
so scared of a few rogue militant religious zealots, that
they became crusading military religious zealots themselves,
brainwashing their gullible patriotic citizenry with bibles
and crosses. now they're sacrificing their own countrymen,
most of whom are young enough to be their own children,
plus they are burning down the garden of eden and
polluting it for thousands and thousands of years with
depleted uranium.

what kind of logic is that?

jezebel

--- In oitribe@yahoogroups.com, "Kelly" wrote:

> Speaking of bitching! I broke my arm in January...
> wouldn't heal...had surgery in June with pins and plates.
> Friday more x-rays and it's broken again/still! I'm so
> OVER THIS! I'm back on the bone stimulator, off of
> therapy, on pain meds, and waiting a month.
> Looking at probably surgery at the end of the year
> for more bone grafts!
>
> Gotta love OI!
>
> Kelly
>
>

vent

it's like i've been written off, dripping with increasing speed through the cracks.

never have i been up against so much NON communication. does anyone know what'shappening? i'm beginning to think not.

the staff, the nurses, nursing assistants, etc. here are all very wonderful to me. but above that levelt here is nothing. it's like i'm being kept in the dark as a form of punishment for not having a family doctor.

since i normally don't follow the rules of society i get punished with no communication from anyone who knows what's in the future for me. becausei'm normally a "healthy" person, rarely get sick, don't eat their chemicals, i don't need a doctor, and now they all band together to make me pay.

what's the deal? i'm saving the state from having to spend money on me most of my life, and when i need them, they just ignore me.

ok, i'm done venting now.

no, i don't feel much better.
-----------------

fall

falling through the cracks here.

maybe the powers that be are just punishing me for being a freak and causing them to be confused.but i feel like i've been swept to the corner and into the dustbin.

wasn't that a sex pistols song?

"like flowers in the dustbin, we're the future. no future."

definitely beginning to remember why we are the way we are.

this is a really intensive refresher course.

long live OIers, martyrs of the medical world.

bureaucratic bullshit

i'm not positive, but things seem to be coming to a head here, not a good head, more like a really bad pimple, a volcanic cancerous cyst.

the last time i heard from dr. murray, the bone dr., the one who holds my fate in his hands because he's the admitting dr., was yesterday morning. he promised me he wasn't gonna discharge me until they find somewhere for me to go where i can be cared for till i heal.

in the meantime, i'm still waiting to speak with dr. chang from pacific rehab, so i can stay there, instead of here at the hospital, which i think would kick my medicare back in and pay for things. but chang seems to be avoiding me, so i don't know. ortho dr. murray has not come by today yet to see me either, since all these delays happened, so i don't know his plans for me. he knows i have nowhere to go if discharged and seems to be on my side and nicer than before. maybe he's waiting for chang as well, before he comes and talks to me.

so i'm still waiting to talk with murray and chang about my fate. medicare called me today and verified that as of the thirteenth, tomorrow, my status has been downgraded to custodial care, which medicare won't pay for, so the bills start coming to me tomorrow nov. 13, unless i move somewhere else and get re-classified -- happy birthday to me.

i'm still waiting on my friends to deliver my wheelchair and clothes, they should be here sometime today, but that's what they said yesterday and they haven't shown up yet. they haven't been very available lately either, so i'm not sure about their plans any more either. i'm afraid my cat, which they are supposedly feeding, may be starved dead, unless they've made other arrangements that i don't know about. so far they have always come through for me, i don't doubt their sincerity, just their scheduling and communication skills.

i left a message on my lawyer's voice mail, saying i was in dire need of a patient advocate, besides the email i sent last week, and i haven't heard from him either. he may be in south america on a case, i'm not sure.

there's a medical-care foster family who wants to take care of me if i'm discharged, so i might have to go live with them until things become more stable, and wait till mom or dad comes here. that's a decision that won't be made until i find out about dr. chang's and dr. murray's decisions. but the foster family wants me for longer than just a few days, so they might not even agree to that, or i might not be able to bring myself to agree to that option because they are so scary to me -- xtian meat-eaters. but i will if i have to, if i'm gonna get discharged to nowhere.

clear as mud? me too. right now i'm fantasizing that dr. murray is trying to help me find somewhere to go; hence, the lack of communication from him.

more later.

hospitaling

plumbing the depths of
feces, emesis, urine and blood.
making the best of the worst.
and what to do with the wasted?
feed them morphine.
the world is my akole.

jvt

fractured update 2

everything's going as expected.

the bureaucrats here are trying to discharge me, but i have nowhere to go. i can't go home because i need care till my limbs heal more, about 4-6 weeks more. but the people here say queen's is an acute care center and i need to go to a long-term care facility, like a nursing home or something, and they say they aren't able to find placement for me.

so i'm just waiting to see how and where the axe falls. time will tell. tune in tomorrow for days of our lives, or as the stomach turns.

but hey, it's an adventure at least, what more does life have to offer?

you're fired

i was brought to this hospital by ambulance about a week ago. since i don't really have any formal ortho or family doctor, i was just assigned one here at the hospital when admitted. my assigned bone dr., a balding, middle-aged man with too much attitude, is a jerk.

since i have been here i've seen him only about 3 times and every time, we've gotten into a shouting match and he ends up walking out the door in a huff, me not to see him till 2 or 3 days later. it happened again today, but i finally got him to realize (before he walked out again) that he splinted my leg in the wrong place, not high enough above my knee. a few hours later, one of the hospital ortho residents came in and rewrapped my leg, correctly.

during our latest shouting match, the dr. told me i was the most difficult oi patient he's ever had to diagnose. (obviously, since he splinted my leg wrong) and that he's the one who admitted me to the hospital, and i never even told him "thank-you."

i almost started laughing, but instead, i kept my cool and told him i very much appreciated him admitting me in my broken condition. he walked out again after that.

so i told the resident about all that and he was flabbergasted at my story. i told the resident, who was very nice, that i felt i needed a second opinion for the rest of my stay here, and he agreed. so as soon as i find another halfway decent doctor, i think i'm gonna pull a donald trump and tell my current one, "you're fired." i've never done that before, but i think this is the time to start a new trend.

after all, i do have some self-respect.

fractured update

today is promising to be an interesting day already.
my orthopedic dr. came in this morning and we got into --another-- shouting match. i asked him what's the problem and he said he never had anyone with oi as old and difficult as i am.... he's very difficult to communicate with.

after he left, i asked the nurse for a list of doctors so i can get a second opinion, or just fire him and get a new dr. , but still haven't received any other options yet. my nurse says they just don't know what to do with me because i'm presenting so many different problems. i asked for a social worker but still haven't seen one. now it's saturday and the social worker is on call for emergency only, so i'll probably have to wait till monday i suppose.

my bone dr. seems to be as frustrated as everyone else ... he says he getting a general medicine dr. for me since i don't have one and all he can do is bones. he has no idea what to do about all my other problems, which seem to be mounting. he finally read the cat scan they took of my leg and realized i was telling him the truth when i said the splint is in the wrong place. the nurse says a resident will be in soon to resplint my leg. then hopefully the fracture wlll be stabilized. till then (and hopefully afterwards) i'm still on a morphine drip which is causing urinary problems, so i'm hooked up to a foley catheter. i also have skin breakdown on my butt plus my other problems.

so i guess i'm just being an impatient patient, and wanting things to happen too fast. one good thing, a very wonderful cna came and just finished giving me a bath for the first time in a week so i feel better at least. and my dr. has been gone a few hours so i'm in a better mood now. unfortunately my arm is getting sore from all this typing so i'm gonna have to stop for a while.

happy birthday mom

... and many, many more.

xoxo

so much for football forecasts...

well, everything worked out perfectly for the football team. the correct team won, that must be proof the election was a swindle, because the wrong person won as well. so much for predictions.

i always wondered what the citizens of germany during hitler's reign felt like. now i'm beginning to understand what it's like to be a victim of facism.

and to top it off, i fell and broke my legs a couple of days before that. so i'm blogging from a hospital bed. this is not starting off as a good run of luck. one thing--things couldn't be much worse.