but i feel like i have to. this is one of those times i feel compelled, like i have no choice, like i must, i must, try one more time. so try i will, one more time. and i guess we’ll see if Drake actually writing something blows up the site like it has in the past. i hope it doesn’t. i hope people have moved on. i even hope they’re happy. i mean that. i’m being serious. because i’m not going for that. i’m trying one more time to figure out “what do you do when your good isnt good enough”? and how do you fix it?

i dont want to die a failure and unforgiven. but who does? so again here i try. is this my swan song for certain since we are literally at the end of our road? i dont know. maybe i’ll have one more burst of energy and write some more. or maybe my writing again will make others here decide they have at least one more thing/s to say too. all i know is that i’m trying.

anyway. my apologies but one big reason we dont write for a long time now is that our illness is too firmly in our brain. we cant stay on topic, and even i dont write the same way i used to, nor can i spell or punctuate much anymore. my profound philosophical introspectic days are fading memories – like all our other memories. and soon, when the good Lord says, we will be nothing but memories. but i’m doing this right here because, even though somebody else was going to post it, i feel like i should, like its my place to. i dont even know if that made any sense.

anyway overall here, those of us left finishing out this “show” (life for singletons), we face our mortality with not one single one of us who has dealt with people – family, friends – feeling like our good was ever good enough. in particular, sharon and i are haunted by it. she as the surviving mom, the one left, the one not wanted that they got stuck with. and me because i know that my stupid boyish (oh God somebody cut me a break at least a little because i am just 16 and i didn’t come to the front until some time after the near-death year of ’98, and we were already almost completely isolated and housebound. so i’ve had virtually no experience with World people outside this family (the few who will acknowledge me) and other mults (or they said they were). i’m not making excuses for myself. i’m just saying i really have, for most of these years i’ve been at the front, i really have always done my best and tried to be good enough and tried to take care of this system, my loved ones, our loved ones.

i think i came front about 2000? its hard, no impossible to remember, as our memory fades, as we fade. and i’m not proud of myself those first oh however long that was before i started realizing i was doing damage and started desperately stupidly trying to fix the unfixable.

i did come to the front with my own agenda – a desperation for just droplets of a life. just a little piece of one. didn’t i, as a human, deserve it? i AM a human being too! didn’t i deserve even just a little bit of this life? i believed i did.

and i became a part of chosen families because our own rejected me since i’m a male. and i loved and i tried to carve out a niche – even just a small one. even just droplets.

i wrote about that once somewhere. i think too long ago to be on this journal. maybe somebody will be able to pull enough brain cells together to go into my writings and reprint it. but there will be those who will remember that about me – that i just so desperately wanted, would settle for even, just droplets of this life i must share.

then things started going wrong, and i found that i, the one who could ‘fix’ anything, the strategist, the negotiator, a high power of this place… i couldn’t fix anything out here in The World. nothing. i completely failed.

and the more i changed as a person, the more i started seeing that hey ok yeah i’m a 16 year old guy stuck in a dying older female’s body, who has a spouse and children and grandchildren. and the closer i became to God (maybe a freaky/odd thing about our system is that we were so high-functioning that, knock on wood, so far we’ve never had anyone front who didn’t have strong Christian beliefs, and who didnt try to make the family happy. and we’ve all loved those GCs with all our hearts. and we’ve all tried to be “good enough” for loved ones and for God, even my system.

isnt it ironic that my ragtag group of rebels, the renegades, made up of people from the two dark systems who not one of us was ever dark enough for the darks or good enough for the lights? isnt ironic that its us, almost totally us (nominally including sharon and lisa because they are my sisters, drew because he is my brother, and amy because she is my daughter)? but its our system, and a few closely related to me, finishing this show out – the left-standing ones? why us?

i’ve pondered so much on what made us stronger? what was it about us, my people, the renegades – never good enough nor bad enough for anyone – that made us be the strongest in the end?

as for me, oh i could just walk off. i could go to the place we call the badlands, and i’ve known other systems seem to call the same or similar place other things. and i have tried a few times. every time, i’ve had no choice but to take one of my youngest daughters, and, to our knowledge, our last split, several years ago – DJ, destiny.

anyway i’ve had no choice but to take DJ with me because she literally goes uncontrollably wild without me. i guess a combination of fucked up parts she got from me, and from her mother (who eventually denied/disowned her), made her one little fucked up super power mess that daddy has to have with me at all times or she wrecks havoc.

once or maybe twice, i’ve tried to go and take my children, leaving of course amy because hell it took her years just to stop calling me her “internal paternal figure”. her place isnt with me. never was. her place isnt even really here at the front in this gawd forever dying time. she was with the most highs too long. she is more them than anything else. and sharon. she and my sister are too much alike, too closely tied. and i never tried to take my oldest son, who’s never fronted but says his place is here. ok. i was making decisions by his age, and we are talking internal, and we are talking mult, so i let him choose. but i did try to just take the rest of them and see if i could stay away from here, this place, this front of this dying body – and maybe, if i could, they might be able to pull themselves together, rally, one more time against all odds (we were first diagnosed terminal over 20 years ago).

i did it with the convicition/belief that maybe maybe if i could stay away, maybe this system would be able to right/fix itself eventually one more time. damn but if G didnt go and shock the shit out of everyone a few years ago when suddenly boom there she is taking over and running the whole freakng show! and kicking ass and taking names, getting people away from us so we might have a chance to rally one more time (our weight for instance hit 86 months after we were put on long-term end-stage care – before the court battle cause sharon dug her heels in and said she wasnt doing that hysterectomy for recurrent cancer with the chaos going on online and threats and shit. Enter Gypsy out of nowhere.

could’ve knocked even me over with a feather. and we’ve been together – me, her, cody – our entire lives. forever. we’ve been together. i didnt know G had that shit, that power, those powers i guess would be more accurate, in her. but man when she took over, she got it done. and to this day, its mostly G and Cody and amy who run the show. i dont even claim to be anything anymore but me. they’re the power triumvirate in our death time.

our system has always since the beginning of time for us run on the power of threes. i do not know why. i might have known at some point. but if i did, i’ve forgotten. if i ever knew, i probably wrote about it in the voluminous writings i did trying to figure things out, piece it all together. i failed.

so it was me, yeah i admit mostly me, who threw us in to these last few years in this death time. i swear to God it was accidentally. but i was, as amy says, more than stupid, i was stoopid, because even though i could see i coudln’t fix anything, i couldn’t quit. i could not stop trying. i could not process, believe, that there wasn’t some way – i just hadn’t hit upon it, found it yet – i couldn’t believe there wasnt some way i could fix the death sentence my stupid loyalty and idiotic boyish belief that i “deserved” a piece of a life was wrong and i had realized it, now let me fix it. i couldnt believe i couldnt fix it. well surprise

but man, when you’ve been shoved over a cliff dude, you’ve been shoved over a cliff. and i got us shoved over a cliff. its my fault.

oh we’ve been told by medical people no it is NOT my fault, that we were a powder keg waiting to happen, that something was probably soon gonna shove us over the cliff into the dying zone – if for no other reason than that massive tumor that was finally removed after several months of an open gut wound when drew fell out of a chair in the middle of the night with us alone trying to calm down some girl having a psycho fit and calling dozens of times. if my memory’s correct, i think there were dozens just on the cell phone record.

anyway that’s random. sorry its in our brain big time now. point is, he fell out of a chair, hit just right, and immediately busted open the outter capsule encapsulating a tumor. hence open nonhealing abdominal wound for i think about four months, several surgeries – finally the sucessful one which removed a huge encapsulated soft tissue tumor filled will suture material from the ruptured feeding tube in our intestines those years ago in the ’98 dying time when we didnt die but they swore our stomach was dead.

the thing is we were told, that tumor was pushing on our intestinal wall and about to breach it. that would have meant immediate overwhelming sepsis from bowel contents spewing through the breech into our abdominal cavity – and we would have surely died. so, in a way, she who swore to see us dead, who shoved us over the cliff, who i’m sure has laughed a lot that we’re dying – in a way, she saved us, gave us several more years. so thank you for being a mega evil bitch controlling your little group of demonettes.

ok that was kinda funny. you have to admit that was funny. seriously though, she threw us into the death spiral, but she saved us the probably imminent/not long certain death that was building in our gut and about to blow open our intestinal wall. so. and because we have gotten these years, we’ve gotten many blessings. and i hope we’ve given a few. i know kids and dogs still adore me.

but back to the point of all this, of why i would speak after so long – amy watching glee and some song slapped most of us still standing upside the head with its profound connection to putting how we collectively feel into words/song…

“what can you do when your good isnt good enough

and all that you touch tumbles down?

cause my best intentions keep making a mess of things.

i just want to fix it somehow.” “Get it right” from Glee 2011

here’s the vid. and below it the lyrics. now i’m done.

Drake Aaron Phoenix, a 16 year old insider of the multiple system known as TC, The Collective





wouldn’t you know it – it only let me post it on facebook. oh well here’s the youtube link. i think…

http://www.youtube.com/watch?v=g5J5U2CXJ3o

Lyrics to Get It Right :

What have I done?

I wish I could run,

away from this ship going under

just trying to help out everyone else

now I feel the weight of the world is on my shoulders

what can you do when your good isn’t good enough

and all that you touch tumbles down?

cause my best intentions

keep making a mess of things,

I just wanna fix it somehow

but how many times will it take?

oh, how many times will it take for me to get it right, to get it right?

can I start again, with my fate again?

cause I can’t go back and endure this

I just have to stay and face mistakes,

but if I get stronger and wiser, I’ll get through this

what can you do when you’re good isn’t good enough?

and all that you touch tumbles down?

cause my best intentions keep making a mess of things,

I just wanna fix it somehow

but how many times will it take?

oh, how many times will it take for me to get it right?

so I throw up my fists, throw a punch in the air,

and accept the truth that sometimes life isn’t fair!

yeah, I’ll send down a wish and I’ll send up a prayer

and finally someone will see how much I care

what can you do when you’re good isn’t good enough?

and all that you touch tumbles down?

cause my best intentions keep making a mess of things,

I just wanna fix it somehow

but how many times will it take?

oh, how many times will it take for me to get it right?

What have I done?

I wish I could run,

away from this ship going under

just trying to help out everyone else

now I feel the weight of the world is on my shoulders

what can you do when your good isn’t good enough

and all that you touch tumbles down?

cause my best intentions

keep making a mess of things,

I just wanna fix it somehow

but how many times will it take?

oh, how many times will it take for me to get it right, to get it right?

can I start again, with my fate again?

cause I can’t go back and endure this

I just have to stay and face mistakes,

but if I get stronger and wiser, I’ll get through this

what can you do when you’re good isn’t good enough?

and all that you touch tumbles down?

cause my best intentions keep making a mess of things,

I just wanna fix it somehow

but how many times will it take?

oh, how many times will it take for me to get it right?

so I throw up my fists, throw a punch in the air,

and accept the truth that sometimes life isn’t fair!

yeah, I’ll send down a wish and I’ll send up a prayer

and finally someone will see how much I care

what can you do when you’re good isn’t good enough?

and all that you touch tumbles down?

cause my best intentions keep making a mess of things,

I just wanna fix it somehow

but how many times will it take?

oh, how many times will it take for me to get it right?

we aint dead yet

and he gets around fine.  he’s finally adjusted to the chaos and re-building after the house fire cause, tho hardly nothing’s back in place yet, the basic couch and chairs are so that gives him his little trail back to follow in to the kitchen to eat and drink and to go outside thru the dog door.  altho he gets lost a lot now and we’ll find him either standing stone still waiting to be found or roaming around with his poor little head bobbing like an antenna trying to find some familiar waves or something. or we’ll start hearing him bummp in to stuff.  us and hom both watches him close and, if he’s gone more than like 10 minutes we go lookng for him. 

we had to train our labradoodle Grace to go outside with him to watch over him cause of three damn hawks that circle our neighborhoodand sometimes right over our house and they can get small dogs and cats.  we had to stop feeding our birds cause when we was researching online for some idea of what to do to keep them outta our yard before it hit on somebody here to hey train the big dog to be riley’s bodyguard. 

anyways we found out that if you got hawks and your feeding wild birds, stop  feeding them till the hawks go away cause they attract them cause their sitting ducks and easy meals.  and that’s just ewwwww and disturbing cause we love our birds and the thot that hawks had probly been swooping down on our birds and oh its just disturbing.  most the birds had already left anyways tho and we was like why’d our birds and squirrels leave. t hen it was like well duh cause of the stupid hawks

i hate hawks.  they so freak me out and even more so now since theys howed up i think it was last year in our neighborhood.  (we’re kinda out close to the boonies) we was already extremely paranoid about the owl closeby since ______ cat got ate by one.  sigh  so we decided we was gonna train Grace to go outside with riley to be his bodyguard cause hawks wont try to grab something when something real big is right there.  

even tho we miss eagles a lot.  them here that fronted when we was a kid used to lay on the ground and watch the eagles all the time and dream about flying away with them.  anyways even tho we miss them lots cause we aint been able to get to the reserve about 50 miles away, where they still fly, but we aint been able to get there since this round of ok well evidently we’re really gonna die this time hit oh seems like forever ago now.

 anyway gawd

i’m glad eagles arent around here cause they definitely could pick up dogs a lot biger than riley.  but we got these stupid hawks to contend with and that damn owl so we was like well hell what we gonna do to protect riley?  then it hit us – train gracie to be his bodyguard

it wasnt hard.  we even had enough brain cells left to do it ourself while we was being laughed at that we couldnt do it.  well we did.   thats kinda kosher TC tho.  tell us we cannot do something…  

all we gotta do now is say “grace go outside with riley” and she goes.  and at nite she gets up when he does and goes out with him whcih is really good for us cause owls is mostly night hunters.

we tried to get gracie to go outside with jess/hom’s new puppy Rosie too, but she refused. s he was like ok so i’ll go outside with the old helpless blind dog but i am not gonna go outside with this little irritating interloper!   and nothing we tried could get her to do it.  punk ass   it dont matter now tho cause Rosie’s way too big now for either a hawk or owl to pick her up.  she’s like huge for her age.  us and jess thinks its cause she was bottlefed mostly so she didnt have to fight 8 other pups for food. 

recently jess was like riley’s been 18 forever, like years.    do you even know anymore how old he is?  and we was like shut up.   but then we started thinking and thinking and trying to calculate and remember, and we was like well damn.  so we ended up asking _____, and she figured it back and told us we got off track and he’s actually 18 now.  so there ya go

omg has every single one of us totally lost the capacity to stay on topic?  gawd for real.  its so freaking irrritating

so i actually came here to tell a funny story on Jess.

i think it was last nite but she was holding riley and he was in a spell of oh its so obvious when he dont even know who he is.  ______ has told us several times we need to put him outta his misery and we say he aint miserable.  he is beginning to get agitation spells tho and if that gets too bad… sigh  a nd he has this week several times had his back legs go out from under him and he cant walk for a bit and that’s also like oh man riley please please please just go to sleep peacefully!  

Jess swears she thinks riley’s hanging on cause we are.  i donno. i just know it’d kill us if we had to put him down

anways shoot me

ok so last nite riley was in Jess’ lap and being all obviously not even knowing where he was or who he was.  and we had just been to the doc yesterday and jess always has to go with us now cause we cant even be our own historian or symptom teller or nothing no more (and no i do not wanna talk aboutit right now and probly not at all.  somebody else can)

anways so she decides to be funny and says she thinks its time to do a competicy

thats wrong

competentcy

ohfor gods sake

anyway jess decides to be oh so very funny and says lets check to see if riley’s still competent.  and then she’s like “riley?” (holding him) and he responds. 

 so she’s like “ok great now high five?”  and he gives her five.  woo hoo

sothen she’s  like “ok riley here’s the big test

do you love me?”  and he does his i love you thing!  yay

so we both laugh and stuff and she says “yay riley you passed! you get to stay in longterm care and not be forced in to hospice!”

funny funny

amy

 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

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

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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?

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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.

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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.

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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.

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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

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

 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

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*

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

 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

I came immediately to look and was thrilled G found what i had searched everywhere for over and over. and astonished that she somehow pulled our brain together enough to figure out a way to get it it on a WP acceptable format.

i cant express what this means to me- to be abel to see any form of that slide show again.  and i can see that my gypsy took great pains to put it back together for me from an original i made years ago about part of my family as close as she could to the original

but i feel its necessary to make crystal clear that i know my chosen loved ones are gone – and that if any of them do still love me – or any or us – they are choosing not to contact us before we die

because we have stated and made plain in public writing right here on WP that our addys and handles remain the same and anyone who wishes to contact us with GOOD intentions is welcome to do so.

ok disclaimer – with the exception of a couple of real nut cases who know who they are.

but thats ok. my babies know to look to the stars for me. they know in their hearts that I love them, and others here too, and they can feel me by looking to the stars.

i happen to believe though that, irregardless of age, if soembody wants to contact someone bad enough, they find a way. be a real mult and just try controlling even an insider little kid every minute of every day.   but whatever. its past. and our memory fades.

i’m just grateful to God that unless i read old shit (which is extremely rare and then i forget again almost immediately – adctually evidently we all do as part of our disease in our brain now) –

but my memories – and others here say the same for the most part – of my lost loved ones are almost all good and wonderful and happy. i see that as a blessing and thank Him. 

*

anyway i cant stay on-topic. while I appreciatge so much and am so happy to get a form of that slide show back that meant so much to me, i have to make it VERY clear that while I still do – crazy or not – STILL TO THE DEATH love my families with all my heart, and would give just about anything to see/talk to manyof them again

however

I refuse to spend my last days alone grieving people i wasnt worth standing by.

My last days are being spent treasuring the treasures WHO DID NOT LEAVE US TO DIE WITHOUT THEM.

And one of my greatest treasures is my vibrant ruby red jewel who loved US all here so much that she/they moved here to care for us in our end-time and keep us out of a nursing home and allow us to die at home.

 so since our strength level sucks ass and i’m beginning to shake all over because G had already worn us out evidently,  I decided to just post the comment I had just made to the person who in the end revealed by her character that she was the true Jewel

regarding the song i wrote i was listening to at the beginning of this note so there’s no confusion as to where i’m at..

*

You, Jess, red rabbit, red jewel, my shining vibrant red light, my amazing wonderful crazy-making J – YOU are the reason I wake up every day because it is you and your never-ending belief in me, in us here, that gives me strength to go another day and another and another — for you, for the babies, John, the kids.

Without you…

well I can’t imagine my life without you, J.  we wouldnt still be here that’s for sure.  we were informed some time after you all moved in to care for us and keep us home that we were about 1-1 1/2 months from being forced in to a nursng home to die.

so without you, there most likely wouldn’t even be an us still.  we wouldnt have lasted long in a nursing home.  come on.  everyone knows that

*

over the years, Nothing – and no one – EVER even came close to making me give you up, J. Nobody. Never.  and there were those who pulled out all the stops and tried hard to end our many-years friendship.

From the start – I’ve always had you – and you’ve always had me. even when we had nobody else. or felt like it. we’ve always loved each other – and nobody could make us stop.

forgive me please for the times I let you down. forgive me/us as our memory, our life, fades and more hysterias and confusions abound.

Know, J, oh my beautiful red rabbit, shining jewel – now and forever – even after we are gone and you have to look to to the stars for me – that though I still love who I’ve always loved, I believe the more you love, the more you CAN love, and my love for you and treasure of you will continue forever without end. …D

(ok i added a little. so shoot me)

Drake will forever grieve not only his lost family but has been grieving this lost show representing his chosen fam and the grands to him that he made years ago. he’s taken spells where he’s made himself nuts looking for this show or even the graph8ics. i happened upon it but WP wouldn’t accept the format. so i spent literally hours using every last bruised brain cell we have left to find reformat and post this fucker to a WP acceptable formate.

I redid it as close to the original as possible. all the pics and captions are unchanged except that I blanked out his “best’s” (barf) name. i purposely incorporated a few elements of the lost relationships – pink, diamond jewel, stars, D’s blue… to please him

this is a gift to my punky. i don’t give a fuck if whoever doesn’t like it being here. this is the only forum we got left that its possible for me to put it on so that he can see it when he wants/needs to and we aint putting nothing privae here no more. so its here and like i said if whoever dont like i dont give a damn.

its for him and his lost family – and people here too – who did not want to lose their family.

I love you, Punky.

others – enjoy it if it touches you. bite me if you wanna. ignore it and move along if ot means nothing to ya

gypsy

(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

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

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

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

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)

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.