8-3-08 – Drake… end-time scenario. we have a plan houston

i’ve been thinking about something I know Eve talked to J about, and I decided i think she’s right.  so I met first with pivotal people in my system, then went to the uppers to see what they think and if they’ll go along with it because its a radical idea/solution, something this system has never done or even thought about doing.  I’m not counting the block.  nobody here did that.  it was done to us.

Eve’s right.  its been harder and harder to hold on, keep fighting as this chronic illness/pain, home health/endstage care period has gone on.  especially since almost dying again in the winter/spring thing and now months of fighting major organ shutdown again for which we’ve refused intervention to prolong our life. 

 Our home nurse even said recently that you can only live so long for others.  you have got to have a will to live of your own or you’ll wear out.  evidently its been visible to those taking closest care of us -  home and home health team-wise – that we’ve got “the look” for a while now.  the look being this somethingthat comes over people which can be seen when they give up.  and they rarely live real long after the look appears.

What Eve said to J reminded me of something I said years ago.  actually somebody posted here on this journal front-page

“Hope is what keeps a person going. It is the fuel the heart lives on.” …Drake Aaron Phoenix, 4-05 (16 y/o insider of TC)

wow and damn but that seems like a lifetime ago.  I wrote it back before i personally lost hope.  then i spent a hella long time lost in grief and self-blame for being stupid and too loyal and trusting and forgiving and getting us into a mess that started a chain of events physically in us which resulted in here we are around the clock home palliative care waiting to die, trying to live as long as possible to  make memories with those who want to make memories with us. 

Even though i don’t think eve put it exactly this way, i still believe that hope is the fuel the heart lives on.  the heart has to have “fuel” from somewhere.  and i personally think it comes from hope.  hope for a future.  hope for recovery.  hope for mending/healing.  whatever.  hope can take so  many forms

*

but i think Eve’s right.  i think the house fire seems like forever ago but i think i remember J saying a day or something ago that it was about 2 months?

 and this repeatedly having to refuse invasive intervention to prolong our life to the point that we said last time recently do not bring it up again.  we’re not doing that to our family.  we’ve had other family members do that and we’ve seen what it does to the family.  also those damn fuckers are always infected and the patient stayas in and out of the hospital and procedures and shit.  and we’re done dude.  seriously. 

we have signed sealed and delivered it all legal and shit even.  we want palliative care.  period.  pain level within coping scope would be nice.  and reasonable efforts to prolong our life.  and reasonable efforts to kick-start our trying to shut down again colon.  but we are not doing anything else -  nor alowing anything else to be done to us.  not. 

told the medical staff taking care of us if you have to drop us over this and force us in to hospice (which we decided to decline after our home nurse/one of our angels told us do NOT go over to hospice until you have given up because that’ll be it).  anyway told them if you have to drop us and switch us over then do it but we’re done with the aggressive, invasive, “proactive” bullshit.  done.  tired.  done.  did i say done?

*

gawd trying to get to a point now is like chewing fucking nails.  anyway i think Eve’s right.  I think its not only counterproductive to our will to live (which btw not a single person who can still front has our own personal will to live anymore - every last one of us is hanging on for loved ones) but that its probably doign us a whole lot more emotional if not physical too damage

 to be sitting in a repaired yeah

all new and shiny and beautiful yeah

but otherwise unfamiliar uncomfortable nothing of us anywhere in half our fucking house.

*

see when it was all said and done after the fire, repairs were ap 20% of the value of the house pre-fire (and we know that because we had just refinanced months before at a lower rate).  of course now, with a brand new beautiful kitchen and half-house walls and ceilings and shit, I’m sure the house value has shot up significantly but that’s not the point. 

the point is that it took us years to get this house decorated after buying it because we were already beginning the downhill slide and just didn’t know it yet.  and now here we sit with not a damn familiar thing on a wall anywhere and a beautiful kitchen that feels like stepping in to the twilight zone it disorients and confuses us so much.  remember our disease is in our brain now and confusion, disorientation and other very unpleasant brain issue shit is part of our life now.

hell the repairs were 20% of the value of our house and that’s with the smoke damage being 2/3 of it – and that’s with us refusing to let the professionals touch our “treasures” or pictures.  with the exception of our original paintings.  we let them clean them because they are the experts and we knew they were ruined if we didn’t allow them to be cleaned.

but the plan was to clean everything else ourself with help.  hahaha

sorry had a hostile moment.  to date, not one single person has helped in any way for even a few minutes to put any of our fucking house back together in recognizable form.

so we walk out of our bedroom, which we’re unfortunately confined to bed in now about 80-90% of the time depending on the day and how bad the pain and/or physical level is, and we are met with

how do i compare this feeling? 

ok here’s my attempt.  its like walking out of our known zone and stepping through a portal in to a totally different house in another dimension.  and from that point on to the end of the house, virtually nothing is familiar in the main part of the house

our poor 18 uyear old blind and almost totally deaf maltese is just recently beginning to be able to find his way back around again and dude we so know how he feels even though we can see and hear because nothing’s the same!

oh god we’d have given anytihng if we just could’ve died in our familiar house with our familiar things around us.  or since that couldn’t happen, if somebody anybody would give a fuck enough to come over and say hey tell me where to put stuff  because i’m putting your house back together.  or if the only person left in reach who we can trust to clean and re-do our treausures would come do it.  but we’ve givenn up hope that that’s going to happen.

and we find to our horror that we are too damn fucking sick and weak to do this ourself.  which was kinda stupid when you think about it that it took that long to dawn on us seeing thatit took us like three years to get the house decorated to begin with.

*

anyway i don’t know the solution to that problem and i have no idea why i wrote about that because i have no clue what we’re going to do about that.  it seems insurmountable and hopeless to expect our things to be around us in our house again before we either die or forget them

I actually came to talk about eve’s submitted plan of action for our destroyed internal world.  how do i explain what its like now?  I think Eve said it best when she told Jess its almost like looking at one of Amy’s post-apocalyptic movie scenes.

like i think i said, her plan is radical for us but these are desperate radical times so hey whoever gets an idea gets listened to. and concensus is we’re gonna try Eve’s [plan for internally and see how it flies. 

given that the originals are essentially decimated with the very few wiht any level of functioning left theirs is actually the easiest to rebuild because they just have a series of personal rooms. 

But Sharon and the other two moms (none of whom are fronters anymore, the other two not since the 10 year ago near death time) are in that system, but they can still come out occasionaly and i don’t want to set them off.  especially sharon who we’re trying desperately to save and bring back to some semblance of functionality since she’s the last mom.

*

also, like Eve, and everybody else agrees too, there’s the unknown element of we haven’t known for a while now where two of our systems are.  and let’s just say that they’re the two systems one would most want/need to know where they are and what they’re doing. 

but caution be damned.  desperate times call for desperate measures and Eve’s plan is gonna be done and we’ll see where the chips fall.

*

one of the things that’s different about our system than evidently many is that everybody here, whether they;’ve ever had a functioning day, even inside or not, has a name and a system they’re attached to.  now after all the illness and degeneration and dying shit and oh hell you name it, there are way more in that category that we ever had. 

but without revealing too much internal shit, this is basically what we’re going to do.  clean up and rebuild a place for all the nonfunctionals.  one place.  radical for us.

that’ll mean that those left even semi-functioning inside will be much easier to provide/rebuild for because,harsh as it seems, we won’t need near the space or effort to accomplish this. 

*

that’s all i’m saying.  i just hope Eve’s right and that at least re-setting some things inside and some semblance of internal order might, it just might work, maybe it might give at least some of us some hope again.  because let me tell you there is nothing worse than being surrounded by confusion, chaos, unfamiliarity inside and out no matter where you are.  especially when your brain is now forgetting

for years, one of the moms, susan, had put on the fridge and it stayed there “failure is not an option”.   ok so hey we are damaged and on our way out but we are still fucking TC.  and TC was a force to be reckoned with.  an anomaly – a highly functioning, highly successful – mult for many many years.  and we aint dead yet.

Drake, never say die or something

8-2-09 – Eve… started to update. ended up grumbling and rambling. will update later

I’m laying here in our prison.i mean bed.  thinking

of the oh about a million thots going thru my brain is one that i’d really like to kill drake for making me start fronting back when thehell ever that was.  desperation move, yeahok i get it.  but its not like i’m a good fronter.  don’t eat. hardly talk.  fam recognizes me immediately as somebody they dont know. and theyd ont like that.  why can they spot me now?  cause i’ve lost my abiility to pose. 

take the abilityto pose from a poser and whats left? fucking life sucks ass

i hear jess in the other room bathing her boxer puppy rosie for her 1st make me a good doggie so nobody kills me class here in a while. a nd the pup is screaming her head off like she’ being killed.  its kinda funny.  she loves to swim in the pool but throws a fit like she’s dying over baths.  little freak

actuallyl we found out 1st thru lucy, the 1st boxer we bought hom cause they was crying and begging for their own dog and drake’ll do anything jess wants that boxers  are actually hella cool dogs.  wellwhen your not wanting to kil them for things like walking by your prison, i mean bed, and nonchanlantly swiping your water or ashtray off into to floor and saunteringoff like their fucking grinning. 

or when they slap you.  talk about wanting to kill a dog.  let me tell you evena boxer puppy can knock the shit outta you.  they’re actually called boxers cause they literally get up on their hind legs and 1-2-3 punch the shit outta you.  they’re playing.  it aint funny. 

i’ll never forget the 1st time Lucy slapped Grace (our gigantic labradoodle whos stilla fucking pup for several monts yet.  and then they fill out for another year.  and she already weighs 75-80 pounds.

she’s a monster.  and we like that.  why we got her.  and Annie.  and why we could afford them cause we got them both on sale for being “defective”.  labradoodles are designer dogs and cost a shitload of  money but people here wanted a black dog (think we pick out black dogs cause the dad bought them the only dog they had as a kid, a black cocker – so its black and cockers)  anyway so them here with both labradoodles searched and searched wanting a “faulty” one – huge, black (the least desirable labradoodle color) and female. 

anyway so luce was several months old when we was watching them play one day from our prison, i mean bed.  suddenly she raises on her back legs and 1-2-3 punched the shit outta Grace. 

oh god it was funny shit.  grace looked at her a minute like i cannot believe you just hit me.  thenn this look came over her of what can i do to this little shit without getting in trouble.  next second she takes a giant paw and slaps that pup down. and held her down for a good 5 minutes, baring her teeth at her. 

after that every once in a while, lucy would hit grace.  and every time, even after lu started getting gigantic she’d let her “mommy” throw her down and hold her down with a paw as “punishment” with thislook on her face like ___ gets of “so punish me. i dont care.  it was worth it”. 

Rosie’s 10 weeks old now and like i said starting her puppy classes today.  we’ve seen her raise up a couple of times like she’s gonna box Grace but Gracie’s already been there done that and she gives the pup this you hit me you little shit and i’m gonna take you out look.  its funny as hell

boxers are deliquents.  i like that.  well exccept for when they do shit like swipe my drinks and ashtray off as they just walk by just for kicks. then i wanna kill them too. 

i’m seeing a pattern of wanting to kill things and that bothers me some.  my people, wel my old people the OWs,  fuck people with whispers. never even think about killing things. 

and i dont mean literally kill, so nbody go write i’m like a future murderer or some shit.  i’m mean metaphoircally as in i’m 16 so suck me

anyway seems like we’ve had Rosie forever since we started looking expecting it to take a while to find a boxer but found a new liter immeditely, then got the call like days later and had to take her like literally days after the pups’ eyes opened andn bottle feed her for weeks to save her life cause i think about almosmt half the litter was sold immediately. 

i donno if anybody else that’d already bought their pups came and got them.  it was funny tho how Jess took a pink ribbon and asked to put it on her pup to make sure nobody else got it and the owners looked at her like she was nuts and was like we know each pup but they let her do it. 

anyway and it feels like Lu’s been dead forever and that the fire happened forever ago. about half left here functioning at all still cries for that dog daily cause she was so our buddy.  least she died instantly like Annie.  instant and happy in a freak accident, stepping off the curb like she’d never done before. and inthis super quiet neighbrohood somebody just happened to be right there in a fucking car. and just happened tohit her straight on with a tiny little injury direct in the temple. 

both annie and luce died so instant they both still had their happy faces on.  thats the way to go tho dude if you gotta go. still

and   time is  fucked up. its like we’re in a time warp.  yesterday maybe dont remember at all.  or last hour. 20 years ago, 40, maybe even 50 years ago,can relay everydetail of events.  but cant spell simplewords.  but can pull some long ass latin medical term outta our ass from like nowhere.   how do we do that?  different parts ofthe brain,we’ve been told.

its beginning too i think – the transition in the brain damage progression to forgetting people.  why i think that?   cause of moments of somebody here talking about a loved one or fam member or old pet or whatever,a nd they stop  suddenly and i donno what it looks like from outside, but inside its like they freeze and get this combo confused/horror look on their face with the realization that the name aint there.

fun.  not.  sometimes jess or john supplies the name and then often ends up having to comfort whoever cause it wigs people the fuck out.  sometimes the name suddenly comes. or a form of it, and whoever here can work out the loved one or fam member name themself in a minute or 2.  but dude

no doubt, we already figured it out ourself but home nurse and jess and even johnhas confirmed that we recovered amazingly from the radical and that huge stomach tumor madfe up of encapsulated suture material left in 10 years ago when we almost died at baylor when they removed the busted permantent feeding tube and sent us home to die with no food source and an abdominal abscess that took like 5-6 more surgeries to fix but they didnt dig deep enough or some shit cause sutere material from the initial feeding tube placement was left and a tumor formed around it.

anywaygod.  anyway so gut got busted open by somebody outside’s bitch fit that made drew fall out of a fucking chair answering a phone for the t50th time to be screamed at and busted a hole in our stomach.  really

i remember that so well.  we all knew instantly we was hurt bad but it was drew at the front trying to calm the situation down with somebody who supposedly used to love him and listen to him.  and he wouldnt a admitted he was bad hurt.  not him.  he’d fucking die 1st. 

anyway we survived all that shit.  then had that lymphadenitis nitemare and piggyback infections. and all that shit required round after round of super antibiotics just to keep us alive.  think somebody says 5 or 6.  i donno.  point is it killed off the good bacteria in our colon, which had already shut down on us before (hence the permanent feeding tube i talked about above).  so now we’ve spent months of measure after desperate measure to get good bacteria to grow again in our severely diseased colon or we’re gonna die from it.

suffering sucks ass.  i just had to say that

 rosie just came in here looking all miserable and shit but cute and very pink with the collar and leash and shit off to doggie school.  thakn god drake got to where he can deal wiht pink again without sending us in to convulsions on the sight of it. i’m serious. literal body convulsions. no even just inside ones.  body convulsions.  just at the sight of pink or thot of

oh whatever.  i actually came on here to grumble a minute an dthen post an update on some shit cause like i’m the only one who ever fucking updates.  people’ll just write shit and then not come back with the ending or results or whatever.  but i ended up rambling. 

oh yeah and get this.  i also ended up talking to jess.  like in a conversation.  a sentence is a lot of talk for me.  i’m losing it too.  we all are.  i think whoever here with the theory. probly drake cause he gets most of the theories and shit.  well he’s most likely to write them down anyways.  hell mayube i’m wrong about that too.  anyway i think whoever is right.  i think us left are beginning to kinda lose ourself, coming closer together.  did that make sense?  whatever it is i dont like it. 

anyway i’ll update later or something.  maybe.  yeah i will.  its my goal for the day.  i will update later.  there’s somet hings needing it. 

just one more thing nowt hen i’m out for now cause cody’s going move and let him eat.  we got to keep the weight up in the zone for our cushion since the DNI.  its all on us now.  anyway pain’s kicking our ass.  kicking. our. ass.

now i’m done for now

Eve

7-30-09 – Amy… more trying to figure things out – and begging – and Jeff Hardy vid on here too

Ok its cody.   i just read this.  and i got the vid she wanted on her to load.

 to some things she wrote here – umm… to others, wow amy shocked the shit outta me.  i’ve always considered her this really cute twittery air-headed kid even tho we’re the same age.   I had no clue she had even the capacity to get such insight into Drake and what makes him tick. 

i did noticed something tho.  her brain’s kinda scrambled or something cause she repeatedly refers to the song on the vid she posted in her entry last nite – that bon jovi one – cause there aint no music on this one.

  anyway so amy speaks and mountains move?  well maybe shake a little at least anyways.  we’ll see

*

*

K so i gotta write about this thing some more. but 1st i’m gonna post one of my personal fave moments of Jeff Hardy – when he jumped a 30 feet drop swanton on the evil orton.

 it hapens about 4-5 1/2 minutes into the vid as you watch his struggle with himself as well as his determination to end the evilness attacking him and his as he climbs higher and higher with orton further and further below totally kocked out. and then.

and before he jumps, he does this defiant i will not be beaten attitude thing and screams so similar to I’ve seen Drake that it kinda wigs me out.

I know at those times i seen Drake do stuff like that or heard about it later it both terrifies me and makes me feel safe cause i know that dude with him fighting FOR me, aint nobody never gonna get me and keep me to hurt me.

*

 anyways so in this vid below, Jeff swanton jumped that death-defying leap and dude everybody thot they was both gonna bite it. its so real and so obvious and you can tell from the un-miked talk of the paramedics off-camera.

here once again, Jeff (again like Drake has done so many times) had done somethng out of incredible recklessness and determination

and then determined to finish it, make it right, do the right thing, he threw all caution to the wind, refused to quit, refused to be beaten, and risked his own life – willing to sacrifice himself to stop this person who was trying to destroy him and his. (yet another thing anybody who knows – and aint gonna lie about it – has seen or known of Drake doing)

minutes of pandemonium following this incrediible disasterous moment on the video as you can hear un-miked paramedics talking to each other. they attend to orton first cause i think thgey really was afraid he was gonna die right there in front of thousands (it had literally happened just a few years ago at another event to one of the Harts, and its happened several times over the years that the wrestlers get literally killed in the ring)

so trhey fast as they can to orton, who looks dead but you can hear the parametics saying he’s still breatyhing and telling each other to hurry.

 then the other smaller set of paramedics attending jeff are joined by some of those who’d been on orton and they get him finally extracted too from the destruction he’d caused when he landed and all the debris covering him and just everywhere by his reckless, extreme, foolhardy behavior that he was convinced he had no choice but to do (yeah yet another so-Drake behavior that i’m kinda getting wiggy just ttrying to write this and work thru it.

then as they wheel jeff out about 10 minutes 20 seconds into the vid, he raises his hand to let the people who loved him (which is like almost everybody who loves pro wrestling – he’s a huge hero) know he was still there fighting to live. evil did not beat him.

 (and yeah oh god but i swear that too was so Drake – always always worried more about his loved ones than himself – sening a message “i’m here, don’t give up on me, dont forget me”)

*

See? evil has never beaten Jeff Hardy. nor loss nor tragedy nor stupid mistakes. nothing. nothing has beat that man. many think he’s so driven and determined and “extreme” -

 they actuallyl call him “the extreme enigma (and umm doesn’t that also describe Drake too?) –

that Jeffs likely to join those who’ve died in the ring.

 and you know i think part of him wants to die fighting. i know Drake does. he’s said himself many times that he’s by god gonna go down fighting to his last breath.

 anyway here’s the vid

 

 

k i’m not done. its still pouring outta me like a broken water main shooting high in the sky and you cant turn off

 amyway so this is about our Drake and me still trying to get hold of all this and corelate it to what i been going thrui for months and why?

but how many times have i seen or been told of Drake fighting on no matter how hurt,how exhausted, how stacked the odds are against him – standing true to himself, standing on his beliefs, on his honor?

takingt sttupid outrageous risks, afraid of nothing, willing to risk it all for his goal or his loves? ,more times than I can count. and for those who really know Drake = and aint gonna lie – they’ve seen this all too

*

then there’s that song with the vid. omg for real soembody could tell me they channeled Drake when they wrote that song and i’d belief it. read this and tell me it aint him…

“this is for the ones who stood their ground… who never backed down. its my life.i aint gonna live forever. i just wanna live while i’m alive.” …”its my life” …Bon Jovi

*

 i think its the ‘its now or never’ part that’s drivinghim n ow like a locomotiive, like a bat outta hell, like somebody almost possessed – he desperately wants to convey some things before we die. he keeps saying and i belief him that he desperately wants his life to have counted for somethiong to somebody, he wants to have left this world having made a positive difference somewhere, anywhere.

 no that aint the Drake many knew in the first few years he was out. and it aint the Drake that was annihilated (AFTER he had changed oh so much for the good) by them that professed to love him. but its been the Drake people here – and people that won’t lie about it – has known for years. he truly needs to leave some positive legacy. i pray he gets to.

i’ve seen my dad Drake these last few years get heartbroken over and over. i’ve seen him so beaten and destroyed that nobody thot he stood a chance in hell of making a comeback. I’ve seen him stand on his honor no matter what every damn time – again, like Jeff Hardy, NEVER faltering on his belief, on his version of “honor”.

 I’ve seen Drake exhaulant,defiant, rebellious… I’ve seen him beaten and thot destroyed more than once. I’ve seen him determined.

 he gets this one special look when he’s determined. there’s a still of Jeff on that clip with him having exactly that look of Drake on him too – that determined as I said above you’ll have to kill me before I quit look. well and there’s more than one of other very Drake looks – exhaultant, defiant, bite me. them that also knew him 3D will see too whether they admit it or not

 *

so now i finally know. i guess evidently we all do here now. why i been having these hysterics over Jeff and all he’s been thru this last year. when i saw this vid and that 1st still of the painted tragic face – that Jess says oh yeah he gets exactly that look – and the others too – outside as well. when i saw that, i just feel apart and it all became clear – somehow i transposed Jeff and my dad, Drake. their lives have had many parallels

and that song – its my life by bon jovi omg that coulda totally been written about Drake. let me live my life. let me have a life – ANY life. let me be myself just sometimes, just a little.

*

 everybody who knows us knwos that i was afraid of him a d them other dark ones (here they’re called bads by well the goods and they call themseves “the way”) that came with him after the labyrithine block got accideentally broke by drew when he got obessed there was other people here somewhere and he could feel them or something. i cant remember.

 in the end, its kinda ironic that drake ended up more or less being our system historian, system explainer – only to get his writings studied to death by a betrayer to the point that oh god when it was decided to take us down, he had just handed our attackers every damn thing about us they needed and way way more ammo to kill a herd of elephants.

we’re still st anding tho. barely and for how long – or how long we’ll remember anything or anybody – i donno – but by god we’re still standing. TC’s a tough little bitch (k and bastard for the guys i guess).

but all the trauma around the online attack that only court could stop did shove us in to end-stage, and now organs are tryng to shut down again that’s shut down before on us and almost killed us. and we have a DNI we aint backing off of and our disease has entered our brain now too – oh the joy not – so who knows how long we have to live or how long we have to even remember anybody or anything? either way dayum. just dayum

 *

 but life Jeff Hardy has fought his entire life all odds just to live his life and achieve something, since the day Drake busted out into this RL, all he too has ever said is he wanted just, as he puts it, droplets of a life to get to live his way – just a piece.

he’s never been delusional. he’snever tried to take over the body – and there’s been times he coulda took just his own bads with him and took over.

actually ironically his system is why we’re still alive today. its almost all them for a long time now. but they’re the renegades – they all like him – none of them never considered dark enough. and i aint scared of most of them no more. a few i still kinda am and avoid cause well all them is um different.

all them. Drake included. gypsy, cody, cam, ,eve – they aint like us. they’re different for sure. but is different necessarily worse? aint being different also part of being HUMAN?

*

 i’m gonna go to his books of his writings and find his droplets of a life and reprint it. sometimes my dad Drake can be well sometimes he astounds me. this person i feared so much at first i’ve grown to adore and love and admire.

and it is NOT his fault we’re dying even tho you’ll never ever convince him of it!!!! He manned up and told john everything – every thing – exactly that entailed I donno cause they keep things from me so i can defend and its part of how i do it (by being in the dark about most inside stuff). but i know John told him he just acted like any 16 year old boy woulda and he wasnt an adult in the situation, and terminally ill to boot, so he don’t blame him for whatever. but still he does blame himself

and cause of that overwhelming self blame Drake has, for a while now, I’v e seen a desperation in him, a determination (he puts it as being on a mission), to be heard. he desperately is trying to be heard and make a difference somewheere to somebody anybody before he dies.

he says so he feels his life meant something and also i think its cause its the only way he can deal with the guilt he feels over his absolute conviction that he killed us by refusing to give up on lvoed ones until they flat pushed us over the cliff into the death-zone of our disease is to try to make up for it somehow by hopefully helping or encouraging somebody else.

*

 I’m so proud of Drake. this guy who busted out here years ago and immediately gravitated to other “bads/darks”, and raised all kinds of hell for a long time, and scared the shit outta me and was well ok he was a dick a lot for a quite a while.

 but he started changing years ago when he realized himself that this whole i can’t say the word but its that thing that happened when we was a kid that almost got me and him both sacrificed and his father, our only what many systems call dark lord but we only had one so he was the dark ruler. but that terrifying damien who came here when we was 3 from somehwere with a few others as adults and been here since and oh they’re bad, and drake somehow ended up being the prince of the pit even tho he aaint the oldest son.

 but anyway after he finally figured out mostly anyways what that s_____ time was about, he knew – least I’m convinced he knows, he’s some key obviously. he’s a key to something or his own father the dark ruler who invaded our system when our body was 3 wouldnt a been repeatedly trying to destroy him his entire life.

 see my dad Drake is used to been being tried to be destroyed and ostracized and punished and trapped. his whole life inside and out’s been like that. and its so sad cause what i started realizing after a few years as he slowly metamorphsed into what he became that, like our beloved Jess/Hom, Drake is a remarkable person. andi wish he’d a got his little part of a life.

now its too late. it’ll never happen cause we confined to bed probly 85-90% of the time sincve the lymphadenitis and one piggy back horrible infection after another this last winter/spring, and jess and somebody here counted the other day a nd we was given i think i remember straight – like 5-6 rounds of superantibiotics just to save/prolong our life!!!!!!!!

well like our ___________ the specialty nurse said and our home nurse too, even a round or two of them superantibitics can kill a healthy person from killing off the good bacteria in the colon if it cant be gotten to grow again.

 that poltergeist kidwas only about 12 and died from it and some movie star a year or two did too – from the good bacteria in the colon destroyed.

 they say its a horrific death but sharon told them again like a few weeks ago when colostomy bag was brought up again to prolong our life no. no we ainty putting out family thru that. if it comes to that, we die when God says we die and how. but to die cause your colon has poisoned you to death? ewwwww

anyways they’re desperately trying t o get n ew bacteria to grow. and its a uphill battle cause we already have a severely damaged colon which has actually been in total shut-down on us before.

spasstic colon (now called IBS) was our 1st dx like in our 20′s or right at 30 or something. then we had that before this situation near death in 97-98 when we ended up having 3-organ shutdown at that famous baylor hospital where our kids found one of only like 6 docs in the country who knew anything about our disease. anyway since then when our colon, kidneys and stomach shut down we we wasnt even supposed to survive that but wee did. b ut now 10 years later looks like we gonna die from our 1st dx – colon disease now making us toxic again. and that just pisses me off and its so ewww

*

anyways so i totally strayed way off. i just gotta say i dont blame my dad Drake for our death we’re facing. nobody here does. john don’t. jess don’t. home nurse don’t. and i don’t. i do really REALLY hope we die quick and easy in the end and that we die before we forget our loved ones completely.

but I love my dad Drake for long time now and we was gonna die from this shit eventuially anyways. it just hurts my heart so bad to see him blame himself and when he breaks down and cries and gets hysterical and sobs sobs now since this the cure from all that winter/spring shit might be what kills us, he cries like i aint never heard nobody nbut sharon sob that hard after she started crying her 1st tears, screaming to god begging forgiveness of Him and our forgiveness and family forgiveness for “killing us” and begging god to just kill him cause he did it – he’s the one that brought us to this – he’s the one that wouldnt give up and quit against all odds – he’s the one deserves to die. that’s what he cries and begs god for. kill him, save us… so totally the Drake he became years ago.

 oh my daddy, Drake, you aint killed us. You did accomplish somf of what you wanted and needed to bad even tho i don’t think you’ll ever understand or get it –

you gave us all here, all us teens throwed to the front after the 97-98 near-death in those few years after one at a time –

YOU Drake YOU gave us a chance to each taste a little bit of life – RL – REAL LIFE. maybe in the sharing of it, you shared so much you dont realize that you cost yourself your share mostly. but you didnt kill us daddy. please stop believing you did. we still alive cause of you.

the kids and babies and john and jess/hom and pets still got us cause of you

 *

Drake’sdonly 16 and never fronted. even came kknowing we was termionally ill from day one and that we wasnt gonna live forever. He like that song just wanted to live while he was alive.

being 16 and having that burden – and the burden of a whole system – and the burden of spouse, kids, grands, just everybody around you being on your shoulders…

i dont care what nobody else says, i say you did good Drake. you got nothing to be ashamed of. you’ve made so many who’ve seen you evolve proud – especially since you took on what you call your mission to try to leave a positive legacy to somebody to make their life count and not waste it and also not to allow themself to be terrorized by online attackers cause there are ways to fight back thru the system.

you’ve made us proud here. for what its worth.

and oh god but the babies adore you “mister”. and the dogs adore you. and i know jess and john is proud of you. and I know Jess adores you. and i think john’s actually come to love you in a guy/guy kinda way. you really dont know what you mean to some people do you? you been too damaged.

 the truth is tho Drake your the strongest person i ever knew. and i admire you.

and now i can look back and especially watching this vid which jess has watched over and over too, and we both see you, even your stances and expressions in Jeff, i can watch this and say oh wow Drake, you was a force to be reckoned with. and i’m finally ready to say i’m proud to be your daughter.

*

 I got a request of people that knowed Drake maybe from the 1st when he was well he scared me to death and later. but i got a request.

 he’s asked repeatedly for forgiveness. please.

i know like nobody never listens to me. never. but i’m asking somebody/ies please come forward and just write him a note or comment and forgive him before we die or totally lose our memory.

i aint never seen nobody try so hard to turn around – and he has turned arouand. he aint that person he was the 1st few years. hasnt been for a long time. and he aint that person them online attackers annihilated and left destroyed. he’s good and kind and he still got his funny moments

 and omg but nobody nobody on this planet got a better laugh that Drake. Cody comes close i think. but everybody who’s ever known him 3D says that. cause DRake’s laugh comes from the soul. and when his tortured soul manages to really laugh, its infectious and it oh the words has left me. i guess that means my brains done all it can.

 i just beg again real quick expecting to be ignored like always. b ut i aint begging for me. for him.

he’s asked publically so many times to be forgiven. please forgive him before he dies or we forget everything and everyone. please.

please dont make him die feeling unforgiven.

its been years since the last even close to “bad” thing anybody could say Drake’s done. and people CAN change. so please please dont make him go out  unforgiven.

those that set out to by their own words to see our death, you won. we’re dying. can you take your win and find it somewhere in your heart to oh whatever. people’;ll do what they want. i never make a difference. i’m just the defender who can hold the front in disasters.

I am encouraged tho and so thrilled to see that one of his kids has done what he believes (and I do to) and managed to contact him just to tell him she still l.oves and remembers him and remembered his lessons to her to teach her to look to the stars to feel close to him.

oh baby, Aunt Amy loves you too. thank you thank you

God please don’t let never mind. i forgot. my brains stopping working. i’m gonna end with this quote at the end of that vid on this entry…

 *

 ”Those who dream by nite inthe dusty recesses of their minds wake to find it was all in vanity. But the dreamers of the day are the dangerous men for they may act their dream with eyes open to make it possible.”  …T.E. Lawrence

*

 that’s my closing. i’m done and i hope i can re-read this and stop obsessing and figure it out and be done with it but i’m putting the quote above thats on the end of that video is also is soooooooooooo Drake that its gotta go here…

 dont give up daddy. dont leave me alone with these that i was afraid of to die without you cause i’m scared. dyings hard. k i’m done

just me amy

7-24-09 – Drake… “Long Nights” video – (added to/ammended) originally posted on 6-20-09

I was starting to watch a movie i’m not at all sure i should since we generally make it a practice here not to watch tragic-type movies.  oh yeah, amy’s all about her “we’re all gonna die” movies as she calls them, but they’re not about actual incidents. 

(BTW we did not watch the entire movie  becuase this movie is a true story and our  T told us the guy does die tragically and she thought it would be very unwise for us to watch it because it had upset her so much, and she doesn’t have our issues or situation)

anyway so this movie is called ”Into the Wild” and the opening song just hit me like a brick and i was like I have got to find that song.  it is hautingly beautiful and devestatinglly sad – which is pretty much where our collective head is at in this end-time of our life…

as we look back, making all the memories we can with loved ones, thinking, rmemembering what we can while we can

knowing the days of remembering will be behind us one day we knwo not when

 only that it is so

whether by our literal death or by the disease process having affected our memoryy processes now, making us forget events, people, yesterday, last hour…

 

I listen to this vid every time. sometimes over and over and over.  in a way, it gives me peace and makes me feel not so alone, not so like a freak, comforted in some way i dont have the words for anymore to know that at least one other person who’s been onthis planet has felt the same way this line  “who I was before, I cannot recall”…

 yeah i relate to that too damn much – and what am I saying?  god.  i’m trying.  i really am. 

some feedback would be fucking nice so i don’t feel mostly like all  this trying and trying to reach somebody and warn people to make your life COUNT -

 and being a bitch or bastard doesnt count in the end I dont think.  i think what counts in the end is what good we did or did we at least leave behind. 

but hell maybe my mind is too far gone already and this is all for nothing, falling on deaf ears or being laughed at by people who’ve told me/us here too many times they wait in anticipation for our death.  

that makes it hard to try dude.  its like in this trying to reach people am I actually reaching an ybody or am i only giving the people who are waiting to “dance on your grave” a whole bunch of laughs?

  i don’t know but I dont have the time, the strength or the mental faculties to give a fuck anymore.  I’m on a mission.  and i have good intentions in my mission.    if you wanna laugh and prepare to dance on my grave, your gonna face God yourself one day so whatever go for it if you just have to. 

Me nor anybody else here who’s helping me some is NOT doing this for you or your entertainment.   this effort is for who might listen

*

people please – anyone who sees this – please.  I’m not the teenaged punk smart ass I busted on to the mult scene as and was for a few years. 

Hell I changed quite a while before the online attack on us even began -

doesn’t ANYBODY remember or have noticed that I basically did NOT fight back publically after the first disasterous weeks in which our entire system was just in fucking shock that anybody was believing any of that crap – and I still  had the power then, and used it, to prevent others here from fighting back who wanted to. 

I truly believed that eventually old friends and other mults would see the ever-widening scope and ridiculousness of the charges piling and piling and piling against us, but i was wrong. 

 still we did not fight back after those first few weeks of the attack (which was finally intervened and stopped way over a year after it began by some of our  medical end-stage care team taking three of those people attacking us online voraciously to freaking court dude because they would not stop even after we got put on end-stage care with home health. 

we were one of the first adult cases to be tried in this country for protection order requests against online attackers – and we lost the big one by a hair – and that’s only because, even knowing it meant we were going to lose, we did not pull out our big guns which we could have.  and then we did not do what the judge said in-session actually could be done by us. 

we just needed them to stop.  dude you just dont do that to dying people.  seriously

*

I’m off-point again.  the point is, I’ve changed.  and I’m sincerely trying, several here are, beforewe die, to pass on something important.  so important

Facing your own mortality changes a person.  you MUST make every single moment count. 

I’m totally sincere here.  Please make your days matter. 

A few others here are  trying so desperately hard in t his end-time to get that message out – although i admit not all of them because they want to (we still have some very betrayed/pissed off people here) – but they’re doing it with me some, this trying to get the message out out of respect for me and my asking them to help me in  this quest before we die.

having been given miracle after miracle of extended life, deciding to try to make a difference, make memories with loved ones, knowing that when our suffering on this earth ends, we will be in paradise with our Lord but those we love, and have loved, or even cared about, will be here still – living their lives.

so we reach out again and again trying to tell you

hoping hoping

that we reach somebody

anybody.

Life your life. live it and remember it. leave memories for others that will make them smile when they think of you. do these things and more

while you can

*

anyway I’m by God living by my beliefs and going out trying to reach just even one person with the fact that dude we just get ONE go-around.  that’s it.  no do-overs.  

I decided long ago to stand on my honor.  Honor is everything to me.  Always has been – even before I emerged – even when I was well what I was.  honor among thieves then at that time or something maybe I guess, but my brand of honor nonetheless. 

I still have the compulsion to live – and die – with honor.  and I damn well intend to.

out,

Drake Aaron Phoenix

16 y/o insider of TC – a mid-50′s female multiple body

6-28-09… lisa – tragedy so profound it is the only thing to ever compare in depth to the death of our son

in this end-stage of our life, on intensive home palliative care in a few’s attempts to allow us to die at home as we so desperately wish, we are faced with a tragedy so profound that it compares only to the loss of our son shortly afer b irth.  we have never compared anything to that depth, not even the loss of our infant grandson 1 1/2 days before his adoption was final.

now it remains to be seen i suppose just how tough are we?  is there still enough left in us to pull it together to get through, and deal with this forever for the rest of our life?  i dont know yet. i don’t know. our overall will to live has already been waning for some time over things such as just flat-out exhaustion of fighting devastating debilitating illness to live longer and the constant constant overwhelming pain even on a fentanyl pain patch.

 if anybody reads this and is a praying person please pray - not for us but for the few who still love and want/need us no matter our physical and deterioriating overall condition that we can survive and deal with this for whats left of our life for them

6-14-09 – amy… i’m on our new puter somebody loved us enough to get us

I;m laying here trying to distract us from the pain that feels like its gonna kill us for sure on my BRAND NEW PUTER!!!!!!!  hom bought us.  and watching a we’re all gonna die thing on tv.  i donno which i love more we’re all gonna die movies, wrestling or reality tv.  i live vicariously what can i say. 

oh and i’m babysitting hom’s new boxer puppy while she gets the house ready cause the smoke damage people are supposed to come tomorrow and the rebuild our kitchen people whatever that’s called i cant remember but i dont care cause i just came here to share that i’m laying here on my brand new puter somebody looved us enough to buy us and even sacrifice themself a new bed they desperately need for us – for US dude – not many people does stuff for us -while we’re t rapped in this damn bed most the time suffering.  its like a miracle almost. for real. i aint even kidding

oh and playing pogo.  on my brand new puter somebody loved us enough to buy for us so we dont lay here and be caaaarrraaaaazzzzzyy.  

dammit if jess dont stop coming in here and disturbing that  puppy i’m gonna kill her

amy

6-13-09 – Drake & a little Cody… we cant even die like a “normal” person – oh yeah and a quote’s on here

its 7 a.m. another sleepless night.  started off being because littles here got triggered off about “getting got” in the night so we had to stay up until the “safe” time.  also something else happened upsetting. and we were so fucking sick for hours

oh yeah and then so riley our 18 year old maltese shits blood at like 5 a.m and that was when we just gave up and turned the damn coffee pot on after the almost hour it took us to clean him up and comfort him and calm ourself the fuck down

 i think we had a couple of short sleep things in the night and thats it.  part of it is also the overwhelming pain sometimes accompanied by nausea that can be so severe your just certain your fixing to die for sure. 

we’re eliminating a fraction of what we should  be and even though this latest med is making the stools soft enough to pass without making us bleed, there’s so little of it.

and also we dont sweat.  we found out that’s one of the symptoms of toxicity.  we havent sweated for years as a result of our CNS/neuro disease but except for  the period when we almost died from toxicity at Baylor, its never gotten anywhere near this bad.

dude we don’t even always have tears when we cry anymnore – another natural way the body eliminates toxins. 

yesteerday we were so sick we only managed to eat once, and that wasnt a lot.  and that was on pain patch change day. but our dose has been cut by third trying to reduce the toxicity because evidently fentanyl builds up in your system if you don’t eliminate it. 

 so we’re back to the reduced dose  patch – meaning pain level back in BAD control – and its only working two days instead of the three its supposed to, and it doesnt generally start working until some time in the early afternoon after placing it mid morning, and don’t feel good patch day ever. 

the second day (which would be today) is generally the best day pain and nausea-wise and when we can get the most calories and shit down us.  and also our best strength day – but we’re so fucking weak now that “best” is well its pathetic that’s what it is.  our own father put it right on the nose when he was asking questions one day recently and he suddenly said all kinda shocked and like devastated and shit “your a prisoner”.  yeah.  yeah we are

and our brain doesnt work good enough anymore to do the imagery and other techniques to help with our own pain control like we were able to do for the first two damn decades of this crap.  hell there’s so many other mults with chronic illnesses that  people here like sharon and lisa taught those techniques to.  you can do so much to control your own pain IF you can fucking think well enough to concentrate!!!  shoot me

oh God help us

then by the evening of the second day, the patch starts to stop working. by early morning patch day we’re sick.  by mid morning if Jess hasn’t woken up we hagve to get her up because we’re starting to have withdrawals and we aren’t strong enough anymore to make the damn patches adhere to our skin so we have to get her out of bed even when she doesnt have to work just to put our damn patch on. 

last night there was hours of oh god the worst i cant even describe it.  we could just keep telling J “I feel funny” “something’s wrong” “I don’t feel right”.  on top of the unbearable pain and off and on nausea.  we are so fixing to get our ass thrown in the hospital.  i just know it.  did i say we only were able to eat once yesterday. dude that juyst wont do

then i don’t know what happened but one of our very disturbed littles got mega triggered off last evening evidently for a long time and nbody at Hom could bump her. I finally managed to bump her from here. 

 actually it was more than one of our littles.  one started it, and hell i’m confused now but either one or two of that group who all look alike got in to it.  it was hell

man that’s twice this week.  that i know of.  twice that we’ve had littles come out wigged out and completely out of  control. 

dude that just doesnt happen to us.  that is such a rare occurrence since we became adult in the body and almost all us here standing have never even dealt with this hardly  at all RL (real life) and we’re like what the fuck

Now its morning.  another day.  I do not hve a good feeling about how this is all progressing.  and oh dude every time one of those have you had a family member die from fetanyl patch things comes on tv we just wig the fuck out. gawd

*

anyway that was all like totally completely random.  i actually came here to put a quote that struck me. 

Patrick Swayze, an actor that some here have always been a huge fan of, has terminal cancer and E’s done some bio on him or something and this commercial blurb comes on and this man looks like death walking and he says

“I’ve got a lot of things I wanna do.  I wanna see how far I can go”

and I thought wow you know that’s us too!  its not just us and the dad and Bill – all of us who’ve totally blown the predictions on us out of the water.  You get to thinking your the only one.  and then to make it worse, like the dad said after the fire when nobody showed up to help something like “sister when you’ve been sick too long people forget you”

but anyway patrick swayze saying that struck me because its what we keep saying too essentially.  only now for months, ever since that damn lymphadenitis and all the complications and the round after round of super antibiotics killed all the good bacteria or some shit and now we survived the illness and the fucking ”cure” made us toxic and might get us.  

please sGod just let me stay on topic like two sentences.  seriously

Its that we’re scared here dude.  there’s so much we wanna do and we have come to the realizatione that there’s no wayw in hell its gonna happen.  none of us can barely type anymore.  ___’s heirloom gift handmade by us special needlpoint is the only one finished.  the others are almost finished but we cant control our hands well enough to even type right anymore!   we’re not gonna make it to Disney world with our ______ and ________ that was our wish before we die.  its too late

and memorioes.  we HAVE to make memories.  as many and fast as we can.  good ones.  oh god in heaven i’m begging you please please let our lvoed ones remember us and remember jmore good  than bad. and sick like this for so long is bad.  we try so hard to hide it around everybody RL but John and Jess/hom but they’re not stupid. 

oh we should’ve died during all those surgeries over that open gut wound from the fall and radical and shit when NOBODY expected us to live we were told later by more than one med person.  we were told the other day our lowest recordd weight was 86. and we lost more than that

 we’re too debilitated and sick now and nobody here wants our loved ones to remember us like this.  so we obsess with chances and every opportunity to make a memory with any of them. 

if we’re gonna keep getting “miracles” and surviving complicatiosnm that kill most people withj our disease how about making some of these incidinces be like actual miracles and cut us a break for a while? sorry god

but we have things to do.  things to do!  and NO strength!  we’re fading.  i think we’re done.  oh god ii’m so tired. just tired. so tired

hwhat was i wrting about?  oh yeah that quote.  gawd

is there anybody else out there seeing this going through end-stage?  if you are do you want somebody to talk to? dude I do

 

ok yeah that was Drake.  this is Cody.  i’m gonna go try to get some nourishment in us before the next we surely gonna die from nausea or colon spasms shit hits

6-12-09 – Drake…. J/Hom bought us a laptop

thiis is going ot be short beause we’re very over thetop suffering from pain and toxicity crisis.  and we been able to eat only once today and have been sick to death since.  its getting scfary serious business

our computer diedon us right before or  after thef ire and luce-annes death,whihd seem like they were one day after the next but we’re told no.  anyway here we are for months now probably 85% confined to bed and with no laptop, wer’re taking nuts time. 

well Jess/hom brought their brand new laptop they bought themselves cashforwith their own paychecks andessentially gave it to us whenwe’re awake and the toxicikty hasnt got us knocked out.

well today she went out wtih another several saved up checks and bought US a laptop – bigger and better and more poiwerful and just everything than ours – which was our baby i tell you. 

they bought us a computer dude.  us.  we told them no no you need a new bed and she saidee bed can wait you cant and once you rebuilt a ocdmputer for me and another time you bought me a new one.  i’m paying you back.

i’m sitting here now and we’re getting scared the toxicity is getting so bad and symptoms and suffering so bad, afraid we’re gonna die this time, not gonna get outta this one – sitting here on our wonderful got it all beautiful HP laptop our Hom, my J, bought us. 

NOBODY but our dad a couple maybe three times and years ago that friende who bought us a computer when some mults wrote that book we were seeking a publisher for when one of the writers pulled out.  when we tried to pay her backi, she said just do it for someone else some day. 

 well i don’t know if you want your name mentioned, but we never forgotten you netierh. even with our mind going.  and we want you to know we’ve bought computers for other people, we’ve sent otehrs rent and food money, we’ve taken in “disaster victims”.  we want you to kno w that ever time we did, we have thoguht of your kindness and what you did for us.  we want you to know because sometimes we have our moments where we also wonder ourselves- but SOME people do give back.

now i’m am so doped up you wouldn’t believe (yet dont even feel it – just feel enough pain relief to be able to think a little ande not cry like a girl)  just so us guys here even won’t cry and wryth with pain, on our beautfiul wonderful new laptop our “jessie” (Jess/Hom) bougtht us. 

we all love them with all our hearts.  many in our fam here do.  but i got to tell you, if I loved J any mnore, my heart would burst. 

thank you J.  thank you Chris and Fifteen and Christine and Lisa and all you at Hom.  on god thank you for this and for everything.   thank you god for sending them to us. thgeir constant encouragement and nmorale helps us live some days in which on trust me we could so easily choose not to bgecause we are so tired and jsut done. so tired

i cant go on. i’m crying again from emotion.  i’m a fucking emotional mess.

drake for my system(yeah If ianlly saw long ago now it seem that its MY systemand not just them andme)

6-11-09 – Drake… quote on deciding when you have to fight – been there, done that

You cannot run away from a weakness; you must some time fight it out or perish; and if that be so, why not now, and where you stand.  …Robert Louis Stevenson (1850-1894), “The Amateur Emigrant”

 

 

See, this quote is not just about fighting for honor to me.  its also about choosing to fight despite debilitating/fatal illness, pain, complications that statisticfally most withj our disease would’ve already died from long ago…

 

to live another day so as to have possibly -just maybe – a chance on that given day to make a memory with someone or to make a difference in someone’s life.    

 

*

 

When I’m dead, I hope its said about me, not only what sharon wants so bad – that she tried – but I want it said about me that I stood on  my honor, and my existence made a positive difference somewhere – just somewhere, to someone. If that happens, my life will have been worth it. 

 

Sharon also says she feels her life will be worth it if people remember more good than bad about her.  or maybe i said that.  oh hell somebody here said it, but i agree with that.

 

and trust me dude, i’ve long ago discovered I think that there are times when you have to have faith or your just screwed.  and there are times when that faith comes in to play when you look around you and realize dude I’m gonna have to fight or perish right here where I stand.

*

 

And just for the hell of it because its a good quote but I’m not sure I believe it…

 

There will come a time when you believe everything is finished. That will be the beginning.   …Louis L’Amour (1908-1988)

 

*

 

I thought about this particular qoute for a few minjutes adfter clicking send and was stricken suddenly with you know what?  i think i do believe this. 

 

when I lost my second family, not only me but i thinkn everybody inside and out who knew me thought that was it, i was finished.  everybody but Jess, the true Jewel.  She NEVER ONE TIME  for one secfond of one day gave up on me, and now I (well ok we actyually in a literal sense) owe my life to her. 

A J destroyed me…

another J brought me back for a new beginning – AND lengthened our life here at home by mopving here to take care of us - so far over a year now and counting – with chances to make memories with our loved ones. 

D

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. 

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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

 

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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 

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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

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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.