8-4-09 – Amy… boxers are hella cool

i know its been wrote here about us getting Hom boxer puppies cause she begged so much for a dog and well she came across the country to take care of us and help john let us die at home so shoot she deserves her own dog.  so we first got her lucy.

 our lucy died almost right in front of the house when she stepped off the curb and a car happened to be right there and happened to just barely clip her right at the temple.  she was about 7 months old and it was a terrible tragedy to our whole fam and right on the heels just days after the house fire.  some here like me still cry for her every day and i think most  or all us gets confused and thinks both things happened the same day but evidently it was some days apart.  i donno. still feels like the same day to me but whatever i guess cause wse cant remember  shit no more

then we talked Jess/hom into starting to look for another puppy right away cause she was so grief-striken and well thats what people do is go out and get another dog.  we didnt expect to find one right away cause lucy had been hard to find cause there aint many boxers around but we happened upon a 2 week old litter just as they was advertized.  and thats how we got Rosie.

then rosie’s mother lost her milk like days later and we had to go get her and bottle feed her for weeks.  the vet said just bottle only till 5 weeks but we talked jess in to letting her have her nite bottle till 6 weeks cause she was such a baby and woudl cry for it. 

anyways i just came on here to write that boxers is like the greatest dog in the world if you want to be loved to death.  omg they kiss you till you think your skins gonna come off.  and like lucy was getting so big, and i know rosie will to, but they get so slobbery ewwwwwwwwwwwww  that you gotta go wash your face after being good and kissed by a boxer.  its funny

they literally hold you.  for real.  they put their legs around you like arms and hold you -  around the neck or on the shoulders if their kissing you or they’ll hold your face down with their paws on eiher side of it and kiss kiss kiss.  and they got this thing they do called boxer kisses. f or real its literally called that.  its almost but not quite like tiny little nips and long as it stays tiny – and I mean tiny cause they get so big – its ok but you gotta start training them young to control the power of their kisses.  lol its kinda funny

 and they’ll wind a leg around your arm or leg or when they get big enough they start laying next to you with a leg on you or their head on your feet or something.   and it feels like your being hugged

lucy would do that – lay her head on our feet cause omg but she pitched fits wanting to sleep in here – the cool place that nana’s bed is dontcha know.   and she’d cuddle up close like Annie used to. 

annie would stretch out right beside us like a person and put a leg over us like a person and i swear you’d wake up in the nite and she’d feel so much like a person that sometimes there’d be a minite or two of confusion.  but never panic maybe cause we knew deep inside it was annie or maybe cause her smell was familiar or whatever

anyways so we’d stay still with lucy laying in her favorite sleeping spot on top of our feet till like up half our legs was asleep and starting to burn before we’d finally move her over after she got so heavy.  then next thing you knew her head’d be on our feet again. 

and they are the funnest dogs to play with.  omg but they LOVE toys.  especially if they make noise or tug toys.  and their interested in like everything!  i mean everything!  lucy would literally lay there on the end of our bed and watch tv with me on my everybody’s gonna die movies or dancing shows and wrestling and stuff.  all cocking her head this way and that for the really really interesting stuff. 

oh it was so special and fun!  and such a blessing to us all being so almost stuck in this stupid bed most the time now and evidently like till this is over i guess.  sigh

anyway rosie is really beginning to get in to tv and stuff and watch with  me like lu used to do.  and she does that tilting her head thing that oh you cant stand it – no matter how bad you feel or how bad your hurting, you cant not laugh at a boxer.  their the most amusing dogs i ever seen. 

jess and cody made a video of rosie reacting to one of jess’ fave songs (which btw rosie, I hate it too).  its so funny.  i think somebody put it here on this journal somewhere.  anyways its hilarious. 

and i also like it cause you can hear cody laughing and talking and in background and he sounds so much like drake that its almost like capturing both their voices on tape.  i know he does too cause jess says they sound almost alike.  drake’s voice pattern is smoother or something. i donno but anyways they both got the greatest laughs ever when they laugh.  inside and out.  i love their laughs. 

and cody laughs on that video.  and its partly why i love it i guess cause its tangible proof of yeah i dont care who youare just listen to that and tell me that dont sound like a guy.  so whatever

anyways

gawd

so anyway there’s actually a name for that head tilting thing over oh so fascinating and/or confusing or whatever that boxers do. Jess researched.  its called the boxer tilt I think, and they all do it.  just like their nippy kisses is actually called boxer kisses. oh and this wasnt in like ANY of the stuff us and _______ found when we was researching Jess/hom’s first dog and trying to get as close to what she was begging for as possible (she’d lost her mastiff/pit bull mix shortly before she came to live with us – and our kids woulda killed us if we’d a let a mastiff in the house.  and our home nurse said she woulda too.  and it was oh man it was so hard cause some here has wanted a mastiff like always.  and a pit bull was out to cause up till recently even they was illegal in many parts of our state and even tho the mean/fighting stuff’s been bred outta most of them and stuff most people are still afraid of them.  and one the kids said ok well if you get a certified stratforshire terrier (that’s what the akc calls them now – the good ones that’s been bred long enough to get that fighting thing bred outta them) but the other one said that if we got one… oh well insert threats of doom and gloom

so ok whatever.  we got a boxer cause we discovered that their the smallest of the mastiff fam and we was like ok that’s gonna have to be close enough.  and it was..  lu anne was greatly loved and now rosie will be too. 

but anyway what was i sayign?  dammit i cant stay on subject no more at all.  ok yeah i was saying

man its gone again.  thinking

oh yeah evidently boxers grow for 2 years like labradoodles (oh the fun) and then they never mature past the maturity of a 3 year old human child.  like NEVER!  what?!?!?   shoot

yeah we learned that on animal planet on me or the dog or some show.  and we were like oh man, a terminal puppy?  a forever giant puppy?  you gotta be kidding.  but oh well we still think boxers is hella cool

 oh yeah oh yeah they do this thing of getting mad at you and punishing you.  for real.  they ignore you and give you dirty looks and wont respond to you or just do what they gotta do but give you no love. 

that is NOT fun for us here.  fact thats triggery as hell but evidently its a boxer thing.  jess said she read on some boxer site somebody saying her boxer could put a bigger guilt trip on her than her mother!  and oh yeah they can.  its true

yesterday rosie got mad at us for the first time cause we made her go outside.  see when we say “outside” all the dogs gotta go outside even tho we got a dog door and even tho most our dogs is old and cantankerous now and looks at us like your stupid i got a damn door to get myself out when i wanna.  and jess goes on and on about it and we’re like you know

we have got to have some control over these dogs cause we spend so much time alone with them.  and we just cannot have one much less two gigantic strong ass young dogs running rampant and refusing to do what we say.  they gotta do what we say.  so one our things that we’ve kept up and intend to no matter what dog or human thinks its stupid is that when we say your all gonna go outside to potty, your damn well gonna go outside

oh yeah ok and we gotta have control over these dogs, especially the big ones, cause oh man but boxers may be kinda compact but they are HUGE.  they’re like cement.  for real.  oh and we found this out when repair crews was here on the house and this one guy walks in and says oh you got a pit-killer.

WHAT?!?!?!   what the fuck is a pit-killer and just what?!?!?!?  

so we tried to google it.  nothing.  then we asked jess when they got home from work or wherever she was and she was like oh yeah that’s the nickname for boxers . everybody knows that.

and we was like nuh uh!!!!!  we did not know that!!  and _______ does not know that.  and better not neither cause there just aint no reasoning with some people. grrrr and besides that whatever. bite me

yeah ok so i still have a bad attitude. w hatever.  i dont care.  what more can you do to me anymore anyways?  kill me? make me die?  take my ability to have hardly like any quality of life at all till we do finally die? 

oh well sorry but that’s already been taken care of so whatever

anways there’s the flip side too and that’s that its good to have a dog that can be so tough it can hold up against a pit if its gotta.  that aint necessarily a bad thing

 anyway so evidently not only are boxers one of them dogs that can make themself look like twice as big (they blow their chests out – we found this out during the fire when we was collapsed on the patio and jess and behind us doing the what she calls weekend at bernie’s thing on us cause we couldnt move cause of the cns shock and we told her do not let them examine us cause they always always wig out and at the ER too and throw us in the icu or at the very least in the hospital  and this’ll pass.  its part of our disease.  it’ll pass.  and if it dont in a certain period of time or we start having trouble breathing or whatever, then we call an ambulance. 

anyway so thats when we found out that boxers can blow their chests out and look positively gigantic and menacing.   we already knew that about labradoodles and chow mixes – only what both them breeds do it make their hair stand on end when their in protective mode and that makes them look like just gigantic and scary. 

oh and they will eat you.  labs will eat you up over their people if they gotta.  evidently so will boxers.  if they gotta pull it out to protect you, they’ll do it.  that makes us feel safe.  we like that knowing

anyway so evidently its like common knowledge or some shit that boxers are called pit killers cause their the only dog (well except for the really giant ones) that can hold their own against a pit bull attack.  and i believe that cause a  pit almost killed boomer one time and if it hadnt a been for a neighbor man taking a hoe or shovel or something and beating the shit outta that pit till it unlocked its jaws, and boomer still miraculously was able to run even tho he was hurt bad, and outran the pit, he’d a been killed cause he couldn’t get that damn pit to let go of him.  and boomer’s a lab and a male lab can get up to 100 pounds. 

 anyways i dont know why i wrote that.  probly cause it was a hella huge shock when that house repairer guy just nonchalantly says oh you’ve got a pit killer.  YIKES

so all the more reason why this boxer’s gotta be well-trained and she’s like staying in dog classes all the way thru for sure.  AND she’s damn well gonna do what we say when we tell her too.  so she can just be mad for us making her go outside.  little punk ass *g*

anyway so i had just got royally kissed to death by rose anne, and she held my face part of the time and wrapped her legs around my shoulders part of the time, and i just had to come write about it and how hella cool boxers are and i’m glad we got to know them that we have.

amy

7-29-09 – Amy… Jeff Hardy vid – sometimes good wins – Gypsy added a prologue

Its Gypsy. prologue time

 ok well slap me and call me stupid but Amy talked herself right into a revelation in this entry that answered a LOT of questions about what the hell has been wrong with her and what are those strange hysterics she’s been having about. 

It hit her when she was watching that vid at the end here for the 1st time.  Right near the beginning, there’s a still of Hardy – looking well tortured.  like a tortured soul.  his face is all painted and shit like he’s been doing for a while now sometimes and he’s got this look on him

and when Amy saw that look (I guess it just went by her when she grabbed the vid cause she didn’t see it til she watched it on here)

but that look on Jeff’s face in that still near the beginning with his face painted – that tortured soul look –

I’m telling you every person in this place has seen that exact look on Drake’s face so many times I cant even count.  and it always like amy said to Jess when she was yet again hysterical a bit ago after her revelation over this damn entry

but amy told jess that every time she’s ever seen that look on Drake’s face she wants to bawl cause its so tragic and it hurts her heart cause she knows how bad D wanted a life – as he’s always said just “droplets of a life” he’d take. 

she asked jess, and then I asked her too, and she told us both that yeah he indeed does get that exact look on his face and in his eyes, and it has the same effect on her

So now now what? now we know what’sbugging amy out.  especially after it flooded/hit her at almost the beginning of the vid (and them song words too – dayum talk about it coulda been written totally like about Drake!)

but when it hit amy that she was relating

oh I need to shut up or I’m gonna blow her entire  entry and revelation

anyway this is heavy shit dude.  and I’ll just say she’s grieving for drake cause he never got more than a taste of life – real life – he has craved forever.  and now he never will cause we’re dying. 

D’s gonna die, like well the rest us still left sttanding here for the most part, he’s gonna die without ever having got to really live.  and that just sucks ass.  i wish i wasnt toxic so i could have a fucking stiff drink

and i just gotta say one more thing while i’m at it.  i’m damn pissed to be dying this way.  now on to amy’s epiphany/revelation and yeah well on with it…

*

 

I LOVE Jeff hardy.  i have from the very 1st day i ever saw him years ago after i first got throwed out here.  he’s like my hero.  i adore him.  i’m his biggest fan.  i almost saw him in person at raw (grrrrrrrrrrrrrrrrrrr), got the t-shirt, got the hardy boyz necklace and i read fan stuff on him

I relate to him on so many levels – he’s had a hard life, he’s lost so much, he’s made mistakes.,  but he’s also been screwed

and screwed

and screwed.

He’s been dogged. he’s been maligned.  he’s been unjustly accused. he’s been attacked mercilessly.  his mother died when he was just a kid. his house burned down and his dog died tragically.  his BROTHER turned on him and broke his heart.  and thats just off the top of my head

 he’s won the world heavyweight title 2 times before in this last year!!!!  and got it taken away from him both times like almost  immediately - the last time in literally less than 60 seconds!!!!

Life aint been easy for him neither, likeus, and some its been his own fault but most of  it hasnt – and doesnt that just make him HUMAN?   and you know, i think its his human-ness that makes me love Jeff Hardy so much.  cause he’s real dude.  he’s REAL.

just like life is real.  sometimes its real good and sometimes its real crappy, but its always real.  and you can count on that from Jeff too – that he’ll be real. 

Jeff Hardy’s like me, and well like my dad Drake and even some others here too.  he is what he is.  He’s lke this is me and I’m doing the best I can.  he’s out there in the open being what he is, who he is, admitting when he’s wrong, trying to do right, busting his ass to be honorable and upright and fair.  and i love him.

I was devastated when he was traded to smackdown like ddays before we got to see WWE Raw here in our city.  and i been taking this seems like a year but i think its probly been less of him getting smacked upside the head one time after another from every damnn direction reallly hard. 

I think i’m relating to him too much.  isnt that called transference or something?  i jjust know it got to the point i’d just cry and cry when some new awful shitty thing would be done to him or he’d get hurt or whatever.

anyway

so once a year WWE has this thing called nite of champions when every single belt in all three branches is up for grabs.  and Jeff fought his way this year against all odds to end up being the #1 contender.  and then last weekend, he got his chance again

and he won that world champion belt.

somebody made a video outta some Jeff moments – ending with him holding up the world heavyweight title he won for the THIRD time this year the other nite – and nobody can take it away from him till at least friday anyways.  and this  person put the video to bon jovi’s “its my life” to it

and omg but the words to that song spoke to me too, to us, to our situation, to well us dude.  and i cried cause no i aint delusional and think i’m really like a famous pro wrestler or nothing, but you dont gotta have exactly the same kinda pains to relate ya know? 

anyways here it is cause I love Jeff Hardy and he finally won and gets to feel the wonderfulness of winning for at least a little bit before the crap starts again

*

dude wow i was just watching my entry for the first time and it hit me hard.  all the stuff I said.  why do i love jeff hardy so much?  why do I relate to him so much?  why does his pain hurt me so much? 

he reminds me of my dad, Drake.  listen and watch and, if you know him, you’ll see it to i betcha

duh

7-29-09 – Gypsy… just like you & you don’t own me vids – if it applies to you, bite me…

6-19-09 – gypsy… figured it was time for a G vid

5-30-09 – Gypsy… just whining like a pussy ass girl

ok so amy’s in freak out land cause our we’re borderline toxic for a while now and they’re trying to keep us at home cause of our DNI but we’re all like wigged out cause last time before when we almost died was cause an idiot pain doc made us fucking toxic and almost killed us.  and it was only our kids rushing to th computer and searching out the very few speciaists across the country that give a fuck about our orphan disease and put us in the back of the van in a made up bed and took off for the baylor medical center to find this doc.   we had 3 organ shut down and he toldjohn when he arrived later that day we wuldnta survivded the day.  well part of that was our tiny body suddenly swelled up like we was about to give birth. 

anyway i started ut saying amy was too wigged out to write this and then got off track so finishing that thot here  and sayig  i’ll do it.   somebody please shoot me

anyway so you know those days tht are just days from hell you’d like to break every damn thing in site and have the whole fucker just swiped from your memory and never wanna another experience another day  like it?  well yesterdayy was one of those days. 

damn it to hell cody’s stupid break stuff song he put a vid up on another entry recently nd plays that fucker ad nauseum cause his attitude sucks worse than mine just came in my head as i wrote that.  i’m gonna kill the fucker after i finish this.

ayway so the list. 

we fell – as in hit the floor cause managing to control fall into furniture or wall dont count.  i knowwe hit the floor 4 times cause Jess says she saw 3 and i knowthere was at least 1 more.  ok first here in oklahoma the thing for years now has been those really expensive tile floors (which we started and then stopped mid project after our brilliant self discovered that solid concrete hurts way fuckin worse to hit in a fall than carpt) and now thre’s a new trend where the cement foundation’s been i donno treated or some shit and has designs in it and crap and then gets these high sheen finishes.  looks hella cool.  ______’s new house has them.   anyway stay on topic moron

so obvisouly our balance was so fucked hat we spent the whole fuckng day on the walker.  dont ge me wrong.  i thank God – and the dad – fo that cadillac walker (we cant spell for shit no more – i think people with dying brains cant spell – but we candamn sure pop out the arm-long latin medical words.  somebody hre asked jess how do we do that!  she said its a different part of the brain.  i donno.  damnitothell i just went offtopic again.

ok so we had 2 – count them 2 – of those terrifying sudden heart grippiing maybe you hit the floor or just a wall and your sure in those few secondsof that spell that this is it your dying.  so we had 2 of them break-thru heart spells.  have we told a home health or doc that?  NO  just leave us alone dude  leave us alone.  make us as comfortableas possible please, do as little as possile to us, andlet us die at home, and otherwise leave us alone cause you can stick a fork in us all.  we’re just fuckng done with suffering

shit a  couple of tiny bloody bricks that you’d a thot we was trying to pass a baby thru our fucking anus.  and thats probly too much tmi right there so that’ll do donkey.  that’ll do

ok so we been swelling some – face, feet, stomach mostly.  its fromt he toxicity evidently.  the medical team is working on trying to get the toxins outa our body and replace the good bacteria in our colon so maybe it’ll work a while longer or some shit.  i donno.  its trigery as fuck so every time it gets brought up or ttempted to be exlained to us, we just shut downand immediately block the info.

our mouths’ been dropped a while.  worse yesterday.  then the eye dropped yesterday.  so yeah we looked like a freak. 

oh and strangers in the house for days.  nice strangers. w onderful people.  but we’re not norma anymore remember?  we’re terrified of like everything.  people most of all.  so meltdown happened.  and tht was just so nice.  not

its aother situation of we know the pros are tring to make us feel better and tell us that all end-stage homebound people get this overwhelming fear of strangers and people and different things happens – we just bascially turn in to weird freaks who should be shoved off a bridge on a deserted road. 

*

so hom, our angel from god, had to take care of the ___________ all day, and its good for them andher that she loves the pool much as they do – cause we was too sick to do anything.  those heart spells kick  our fuckng ass for th rest of the day and we’d already had 2 gby afternoon. 

so toniteis a memory nite.  we have to make a difference.  we have to.  so we had to make a decision – the dreaded cancel SF adn try to rest and hopefully improve some today or at least get a little strength or go thru with it and put it all off on poor jess cause we’re just a msotly worthless dying lump now that aint even gonna get anything we HAVE to get accomplised before we die evidently.  oh god dont let me stray off on to another topic

oh yeah forgot to mention that we had at laest 3 of them suddenly go to sleep and if we can be woke up we’re disoriented ad prbly go right back in to it.  they think its narcolepsy.  one of the ________ said why you having all these weird life-threatening complications?   cause we keep out-living the complications that MOST people with this godforsaken disease have died from like a fucking normal person so we’re now just going down the line of strange horrific complications…

can you survive this?  yeah?  ok can you survive THIS?  really?  ok well lets see if you can survive THIS ONE!!!   its hell.  we’ve livedtooo long. we’ve lived too longand now the med profession d ont knowwhat to do with us.  how fuckng comforting is that? raise the constant opium patch again?  ok.  raise the this and the that?  ok  stick you on 52 (i’m exaggeraing) rounds of superantibiotics – which oh by the way KILL the “good” bacteria in your already fucked colon that’s already shut-down on you before annd supposed to aint even work?  ok

miracles my ass.  these “miraculous” recoveries/going on dont feel like miracles.  but hey we’re =getting what we’ve prayed so hard for just like we got for the girls – time.  tiime to mke memroies, make a difference, leave a legacyof love to those we love so much.

we’re about all about at the limit of how much we can suffer.  there’s like some invisible line of suffering i thnkn in which the dying person just goes ok i’ve had enough.  long time ago, john named our suffering the “oh meter”.  he’d come in and say to take a pain pill and he always seemed to know when.  so does Jess.  anyway soembody here asked him how he knew from another room that we needed pain meds (we get so bad off that we cant thinkk well enough to take pain meds). 

anyway so John says he goes by the “oh meter” and whoever here was like we have an oh meter and he was like yeah when he hears too many “ohs” coming outta this prison – i mean room – he knows our oh meter has gone too high and we need pain meds.  good lord

oh yeah and then wee get yelled at for hours last nite.  fucking hours dude.  godplease have somemercy on us

 

*

so the weight’s being going up from swelling and we get told that they expect anywhere from a 3 to 10 lb weight loss whent hey do thisthing they’re fixing to do to try to re-set our colon and beg it nicely to work agan for a while longer.  most likly 5-10 lbs. 

WHAT?!?!?!   that’s our fucking cushion we’ve worked so hard to get!  we have a fucking DNR dude AND a life trauama to end all life trauma’s now within a month or something away.  and your telling us that we’re probly gonna lose our cushion – nd we by god are not going back o the DNR and that includes colon, stomach, kidney, whatever fucking bags.  i betcha they wish there was a mouth bag they could put over us.  

 we are not a good patient.  we dont mean to be a pain in the ass but we dont understand hardly anything that’s goingo n anymore – and that makes us feel VULNERABLE.  and it wigs us th fuck out cause we’re still in the stage of the i’m not gonna say the word where we know we’re losing our faculties s0 hysterics and irrationality and panics and hold mes and oh god please shoot me – its all just part f our days now.  the fam probly kinda wishes we’d go into the next stage already.   i’m morbidly kidding.  i know they dont.  i’m just fucking overwhelmed and i’m just a fuckng girl dude.  i’m 15.  15. i’m 15.  i’m not equipped to handle this.  help

offtopic again.  what a fucking shock sigh 

*

k heres where this mornings wig=out comes in.  we’re 4 lbs up in one day.  saying that again slowly - 4 lbs up in one day. 

oh for gods sake can we get a fucking break?  please.  cant we just die like a regular person for gods sake?

we do NOT go up 4 fucking lbs in a day.  oh we can lose 4-5 fucking pounds in a day – which then does NOT come right back and can take anywhere from weeks to montsh to gain back.  but UP 4?  in 1 day?!?!?!   no 

oh god ad the pain.  oh and the sick.  did i mention we wok up this morning looking 6 months gone?  that can only mean one thing.  disaster.  we are definitely toxic.  now we have insiders wigging out that we’re gonna die like that poltergeist kid and that movie star also here a while back from colon toxicity. 

we’re either gonna have to do soemthing or things so traumatizing to us that i dont jnow how we’re gonna pull ourself together for tonite or we’re gonna get thrown in the hospital today for crossing over in to too toxic.  evidently just killing us doesnt seem to be an option

*

hell even i’ve given up even claiming to be a dark hard bitch anymore.  i’m just a scared 15 year old kid dying a death i wouldn’t wish on even our worst enemy (and i mean that) who’d give anything for a hug, a kind word, some time spent with me to try tohelp me calm the fuck down (already had a fucking xanax bar which obviously did not work - and i’m one of those who cant stand to be touched except by the dogs and ______.   

i’m lost.  i’m as lost as D.  i’m almost as fallen apart as Amy.  and i’m shutting the fuck up now.  nothing i said is gonna make any difference anyway. never fucking does

i just read this.  what a fucking mess.  nobody gonna read this.  oh wel whatever.   i got it out anyway.

5-16-09 – Drake… they shoot horses, dont they?

the pain today is unbearable.  aside from our regular usual pain that we’re on kill an elephant-sized meds for, including a fuckng opium patch, the back of our head at the cerebellum region, our back and our llegs are on fire today.  fire.  like literally you could look down and see fucking flames.  the agony is indescribable. 

and thats with the opium pain patch dose increased several weeks ago. oh and the xanax doubled – we’re now on bars. 

i didn’t even know xanax came in fucking bars.  the hyper doses of xanax are partly to help our increasing probs with anxiety, spells of confusion and irrationality and hysteria as our mind/memory goes due to disease progression and neurologic hits from all those fucking surgeries and the cachexia and god only knows what else – and still having enough brain left to know we’re losing it (yeah that sucks ass for real). and its partly because xanax boosts some of the pain meds we’re chronically on.  so xanax bars it is.  fuck maybe i’ll take another.  like what would it do to me?  really? 

  i know some of the overwhelmind physical miserty today is the weather too.  in spring and fall here when it rains so much (the rest of the year, our region is semi-arid), the mold count kills us pain-wise.  also our damn stomach and colon which have been through so much and are so dramatically infected with our disease are working in perfect tandem to fuck us up and make every moment of our life one of misery. 

we may have to go to specialists again and shit and see if there’s anything left that can be done but we know we could end up on bags – and that falls under our DNI papers.  in other words, we’re not fucking doing that. 

So we get told how dying in either of those ways is an horrific way to die.  thanks.  really.  fucking sigh 

i know they mean well.  they want us as comfortable as possible in this end-stage, but we drew our line in the sand like we’ve had to do in other situations in our life before – NO intubation.  we’re not backing off it.  not.  if God decides to be merciful He’ll spare us either of thsoe particularly gruesome deaths

also its three days now to our son’s death day.  actually we were very sane last year.  i think we were too sick to be too nutty.  and we’ve been very sane for us in this time this year.  until today.  today I think a straight jacket might be in order. 

 if we had knock us out pills, we’d fucking take them.  oh we have plenty of kill us pills by just taking a liiiittttttle too much.  but no knock out pills.  Sometimes our aversion and fear of meds sucks ass.  this is one of those days.  I’d give anything for a damn pill that’d knock me the fuck out today. and tomorrow.  and the next day.

and then there’s the element of this morning’s melt-down over findign the back door not only NOT locked last night, but not even closed good.  dude.  the shadow people came in on us in thenight and took us through unlocked/open doors and windows.  and i’m not revealing any new secret in saying it – that was taken care of a long time ago.  fuckiing sigh

so the morning melt-down over that sucked what was left of our strenght – and we’ve already  been on a walker mostly for days even around the house and essentially bedfast.  and sleeping all the time. 

what?!?!  dude we have life-long sleep deprivation!  what the fuck  is up with the sleeping all thetime now?  hell the other day we fell asleep during a hand of cards!  and that’s just one example.  oh my god.  seriously.

the hom enurse says our body is essentially kinda inwig-out mode and thinks that sleep will “heal” us or some shit.  i’m not sure that made sense.  anyway evidently our body is tryng to make us better by knocking us whenever it damn well pleases.  nice.  actually now would b a good time for oneof those spells

oh yeah and so also tonight is a memory night.  we have got to go.  there is no out, no question about it.  it doesnt matter one fuck how we feel or if we’re able.  we absolutely will NOT miss ANY chances to make a memory with our loved ones with the time we have left.

did i mention our severe hypoglycemia we’ve ehad since we were like 20 or someting is kicking our ass?  yeah that’s fun too. 

ok i’m donewhining like a girl.  i alreadycried like one today.  figured i might as well whine like one for a while too. 

at least i’mholding thefront so girls dont have to.  I’ve been knocking myself out to hold the front as much as possible especiallys ince the last system colapse a month or two or whatever that was.   the few of us that were left only some of us have made it back at least pretty functional and the rest are either still out or not able to front much so we’re like half down from what we had left.

ok i’m really done now.  havent eaten a bite tdaoy and the inside shakes just hit.  that gives us anywhere from like now to maybe 30 minutes to get food in us before we go down or pass out or whatever it is we’re doing. 

 are you passed out essentially if you cant talk or move?  gawd i wish we had died this last time when we were supposed to. miracle my ass.   now all we are is a progressing mess and burden on the two angels fromGod taking care of us.

i keep tellng myself, we all do thats left, that if our loved ones remember more good than bad about us after we’re gone then this hellish battle to live longer for them will be worth it.

oh yeah i listened to my music for hours today.  damn but i’m a fucking depressing person to listen to his musci.  in fact i changed all the descriptions on every one of my playlists to “they shoot horses don’t they” (if that makes no sense, look up the movie of the same name’s description) ok than was random.  out

shoot me (homage to our sweet Kelli)

drake

5-14-09 – Drake… FYI – nothing here is private anymore

Several weeks ago, amy wrote an entry which she wanted password-protected but she did something wrong or there was some glitch in WP or something and, evidently, what happened instead was that every password-protected entry on this site appeared to be suddenly open.  Now, I don’t know if they really were open or not.  I do know that, for the last few years – ever since several fucking traumatizing episodes to people here in which somebody here wrote something on LJ they intended to be private but hit the wrong button or some shit – only to have alll hell break loose and voracious accusations of doing it on purpose –

anyway ever since that time, any time anybody here writes anything we want private or password-protected, we then immediately sign out and then go to the journal to see if we can see the entry.  Its a paranoia thing – I can own that.

At any rate, Amy finished her note , password-protected it, signed out and then went back to this journal to check and make sure it couldnt be seen only to find every single entry on this site open.  Or apparently so.  I don’t know.  Seems unlikely to me.  I figure its more likely that she wasn’t actually signed out or something. 

But, whatever it was, after trying to “fix” the problem for about 15 minutes, somebody here checked the stats – and I’ll be damned but there had already been a bunch of hits (WP doesn’t count your own hits).  Although we’re used to be famous – or infamous - or whatthefuckever we are - but it does get old and massive paranoia and hysterics ensue because of this overwhelming fear around here of unintentionally causing “trouble” (even though we know for a fact now since the court thing that, not just online attackers, but EVERYONE – including shock of shocks even us – can say whatever we damn well please).  but nobody wants to hurt anybody anymore or cause any trouble or open anything back up so we try to be careful. 

First of all, we’re just done.  Secondly, we never intended to hurt anybody to begin with in all that – which happened seems like a life-time ago now.  

We just want to talk about our faith, and our gratefulness to God for every extra moment He gives us (even when particular entries might not be coming across on the grateful side). But, so very importantly t0o, we’re end-stage on intensive home care just to try to die at home and not in a nursing home - so the last thing we want are any more rounds of online trauma aimed at us over soemthing somebody here writes – or wrote years ago. 

we’re already down, people.  No point kicking a dead horse so to speak. 

Some here just wnat/need a place to write some, vent our feelings about illlness and facing death and life – whatever.  Sometimes we want to talk about our faith and the miracles in our live.  We want to talk about things we’ve learned, epiphanies, memories – and the making of memories. 

We want to talk about our multiplicity – and what a freaking double/triple/quadruple whammy it is to be a few teens trapped in an older woman’s dying body.  

we want to post lyrics and quotes and

Sometimes we want to have some humor here – write semi-offensive funny shit or post videos – just whatever dude.   fuck, we’re a bunch of teenagers.  we just wanna act like it sometimes.

We want to talk about who and what we struggle to live every day we can pull out of this for – our family and pets.  but Hell, we don’t even write about family anymore in public, except Jess and John – which leaves gigantic holes in the good things still going on in our life.  But there are extremely valid reasons why we no longer write anything public -

and that brings us to one of the biggest reasons we decided to open so much up (yeah I finally went along with it, even came to agree with it) –

aside from the hope that our struggles with tryng to die with some dignity might help somebody/ies else who might happen upon this journal, we also decided to open a lot of things up hoping to encourage other people who have been attacked online. 

And, like the reasoning which finally got through to me, its impossible to encourage others who’ve been online attacked if you don’t talk some about what happened to you – and, particularly, if you don’t tell what you eventually did about it. 

In order for people being online attacked to feel at least some empowerment, or even hope of empowerment, they MUST know/be told/see-read examples from somebody/ies else who’s been through that.  People who have done something about it have got to get the word out that you don’t have to be a victim – you CAN do something about online attackers.

What we ended up doing was taking some people who wouldn’t stop to court, requesting protection orders (I might be using the wrong term for the situation because our brain is well not what it was before end-stage hit).  

Actually, in our case, we didn’t do it – the online attack on us was so protracted and so vicious – didn’t even stop after we became end-stage and got put on home health care with daily aides for what’s left of our life – that it became um extremely detrimental to our struggle to survive longer, and one of the medical professionals on our case took action – with other vital members of our medical team entering in to the situation as well.  and they filed it on our behalf.

*

So, with the new goal being to make this journal a place in which we don’t have to worry about whether anything here got password-protected/privated correctly, what we’ve ended up doing for the last few weeks is going through this entire journal, deleting entries which are so full of anger, bitterness, hurt… that there’s no way to tone them down enough to open - or salvage any part of.   Since we’re very ill and weak, its taken a lot of effort and a long time.

About half the previously password-protected/privatized entries had portions which were salvageable; and, in some of them, we feel that things are said which will either explain a lot about us and/or might make a difference/help somebody/ies else…

so about half the previously closed entries on this site are now open in amended forms. 

anyway so that’s it.  you can now feel free to hit this a billion times.   just remember – we’re doing this for ourself  AND for people who either knew us “before” or might happen upon this, hoping that the parts of our personal story we’re choosing to put in this place might make a difference, make somebody/ies else not feel alone anymore or maybe like they’re the only one shit happens to.

*

Oh yeah one more thing – it would thrill us to death to see/talk to old friends again.  If I – or anybody here – ever hurt you or whatever, again, for us all, I’m sorry.  We actually remember very little of it.  And, if you hurt – or whatever us -  we probably remember little or none of that either so don’t let old arguments or fights or whatever shitty things I said or did in my past – or whoever here – or you might have said or done to us – stop you if you wanna say hey.  If we don’t remember you, or have to be reminded who you are, apologies in advance – our disease progression is kicking our memory ass.

If you want to contact us, and can’t remember our addy, all our comments have to be approved – just write a little note, and say you don’t want it publicized (for reasons which, trust me, we’ll understand), your just making contact – and we’ll write you back.

*

Also, we’ve had quite a lot of comments – which we have not accepted.  and that’s a shame because some people have commented and said some very nice and encouraging things about our journal.

As we tried to make clear on our intro thing though - if you appear to be a business site…

or if we don’t know who you are and you have not linked us back to your personal WP – or include a  personal name/addy we recognize – we’re not clearing any comments. 

*

Damn I hope this made sense.  I tried hard.  making sense isnt alway so easy anymore.   At any rate…

 

the peace-loving hippie, can’t we all just get along , Drake

4-28-09 – Amy… end of life stuff – “people are better than no people” quote that spoke to me

so we’ve been pretty sick.  ugh  sick sucks.  I hate sick.  i’m sick of being sick.  sick and tired of it all.  just tired  

anyway i finally dragged myself outta bed a while ago cause ___’s coming and turned on a recorded show on tv.  according to the tv, its supposed to  be Samantha Who.  i lovet hat show.  but it wasnt.  its some medical show. 

and the recording starts in a hospital room and the scene is the fam sitting alll around this lady’s bed when she suddenly flatlines.  docs come running from everywhere like we’ve had happen to us before, and one of them shoves a family member outta the way and tells her and the rest of them to get out.

i gues its the daughter says “are you gonna let us know”?  and the doc gives her this die look and says snidely “yeah i’ll let you know”.  nd then he calls them bastards as they leave. 

then he immediately turns his attention to the lady that aint breathing and does that chest shocking thing on her and yells at her to come back and says essentially “dont let the bastards win”.  and it brings her back to lfie and she looks around disoriented.   

the doc’s face softens and he says “hey your a fighter you kknow that?  you’ve worked hard today”.  and he turns to a nurse or whatever and says “she needs rest.  see the family and be sure they dont come back in here.  give her a break from all the ‘love’”. 

and the sick lady says shockingly emphatically for somebody that just wasnt breathing a minute ago “no”!!! then she looks all tender at the doc and explains “its been a long time.  but they always come” (assumably every time she almost dies).  then she says “these are my people.  People keep you going.  people are better than no people.”

sigh  sometimes you feel so alone.  you try so hard to hold on to your faith in God and be grateful for yet another miracle of extended life, try to be grateful for every extra day, every extra minute, and especially be grateful for the few that still wants to be with you every minute they can and tell you allla time how much they love you and love being with you. 

and yeah we been told lots, explained over and over to us, how its normal for people to draw away from and visit dying loved ones less nd less, spend less time with them, cause its hard on them to watch their loved ones go thru end-of-life stuff.  but oh trust me, its harder to life it.  at least the ones with family members/loved ones in that situation has got choices.  when your the one, your choices is limited dude.  and almost all the choices you do get revolve around the choices of themwho love you but they get overwhelmed and tired of it all and stressed out from watching their loved one hang on to life, and so they drift away and not only dont make hardly no memories no more but leave the care of that person they really do love so much in the hands of whoever is willing to do it.  and if that sick/dying person is real lucky, then at least one fam member is willing to do it and if they get overwhelmed and cant do it alone no more maybe God sends a angel to help them like He did us when he sent Jess/hom.  yeah we aint stupid and got rose-colored glasses.  we know Hom aint an angel but they are to us cause they came when we needed them to help john when nobody else came.

But then another crisis hits sudden, or maybe gradually comes on and becomes another obvious life or death crisis – and they come.  they always come.  but in between they get overwhelmed and tired of it all and stressed out from watching their loved one hang on to life and suffer.  and peple dont like to watch nobody suffer.  normal people dont anyways.  watching soembody suffer is hard.  so they drift away again – until another crisis of life or death – then they come cause they always do.. 

whats so very very sad and tragicc most of all in these situations i thihnk is that the loved ones lose understanding that those times between the life and death moments are gifts God’s given us all - and the thing about gifts of any sort is that they can be treasured or squandered.  its like people forget or something the power of a few minutes of time laughing and remembering fun/cool stuff, or taking a while outta their day to do something together they used to do with that loved one.  and i think they especially forget the powers of a kind word and a hug but i’m tellin g you these things can lift the spirits of a person on home health trapped almost totally at home or even more horrible trapped in a nursing home, these little things like kind words and hugs can last for weeks or months or even all the way to the end of however extra long God gifts us with cause not only can we experience every minute we can get with them that wants to spend it with us and still thinks we’re worth something even tho we ourself just see ourself as sick and worwthless – i think loved ones dont understand that a kind word,, a hug, a little of your time, a special treat or little gift or homecooked meal or taken out to eat – any these things and so much more – such little things to you – are treasures to a person trapped in home health/longterm care, end-stage care, suffering – treasures that make us have the strength and courage to fight another day, hang on another day, get up another day cause just these little things make us feel loved.  and when a person feels loved and valued oh man they can climb just about any mountain! 

and i think and loved ones dont understand that these acts of kindness and nice words and your time is more for you in the long run than for us cause your gonna be the ones left when we’re gone.  we’ll be free at last of all the pain and suffering and sickness and feeling worthless and useless and unimportant and cant do nothing right and and and cauase we’ll be with our Lord in Paradise.   so i feel sorry for them that’s left with the coulda shoulda wouldas cause we been there, and we know it can eat you up. 

*

for us now, its too late for anger and bitterness at this point, ya know.  too late to hold on to grudges and perceived (or real) wrongs.  too late to refuse to forgive.  just plain foolish to hang on to old stuff that cant be changed.  its the people gonna be left be worry about cause it’ll all stay on you after we’re gone to Heaven.  This is the gift time God gives some people.  and sometimes I marvel myself at how many extra gift times God’s given us,, how many times we been supposed to die by all accounts and somehow didn’t.  but this is yet another gift time from God for each of us to do with as we will.  dont squander your treasures or anybody that was EVER a treasure to you.   

shoot we lay here and remember things that happened a long time ago when somebody we didnt expect came to visit or gave us a call or brought us a little gift or called and said “get dressed. i’m buying you lunch and we’re goign to the store or gonna buy flowers or whatever.”   or just showed up with food you know we love (of and if you made it yourself we’ll just bawl from gratitude altho Jess/hom being here so long now has pretty much freed us from that humiliating reactionn cause they’re so wonderful and cook for us wonderful tihngs alla time and cause of them we’ve blown ALL the docs and home health peoples predictions of the possibbilities outta the water) .  what i’m saying i guess is right or wrong (and oh god evidently we made lots of mmistakes in our life) but we choosing to live in this debiilitated constant horrific suffering state on freaking opium patches for god’s sake for you – we shouldl be long dead.  we’re supposed to be dead.  how do i say this.  i’m scared i’m gonna get yelled at. ok here goes – sometiems, just maybe every little once in a while, please choose me – even just for a few minutes,, a few knd words, a hug

anyway dammit i cantstay on topic.  point is i donno.  this little snippet of a show  i happened upon just struck me ya know.  like ok well we aint the only one that goes thru stuff like this if its actually been studied by pros and stuff and shoot even being made part of a medical show.  still sucks tho

and whatever i guess but you cant make people do what you’d do.  or have done yourself when you was able in the same situation.  or what you think is the right thing to do.  it aint your decision no more.  actually hardly nothing’s our decision no more.  anyway i hope somebody somewhere listened to me but the way it generally goes with me, that aint likely.  whats much more likely is that i’ll get yelled at for saying something wrong.  but sometiems its like i wanna scream/cry/beg/plead dont anybody wanna spend last times with us hardly?  its like we wanna cry out “hey!  I still got lots to offer even tho i’m so sick.  look at the ______.  they still adore us and treasure every minute with us.  we can still make memories. oh please make memories with me/us!  you will remember them later and treasure them.  we been there.  we know.  we promise and if even one person anywhere – whether we know them or whether they’re just sombody that happens on to this – if my gut-spilling here made any difference for the good i’ll be so happy, not just for the sick and dying peoplew ho feels so alone and forgotten, but for you if i helped you understand that you gotta do so little for people in our situation to make our hearts sing.  if it just aint doable then k then. whatever i guess.  i tried.

just me amy who dont even count anyways to hardly nobody

3-17-09 – Cody… my anthem or something – actually I think its Drake’s too

3-17-09 – Cody… for Gypsy – its her anthem or something