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

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

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

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

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

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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”)

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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.

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 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…

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 ”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

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

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

just me amy

7-28-09 – Drake… love always but treasure who stays – might need to make myself clear considering what G just posted in an entry below this

I was listening to J’s playlist for me to the song – “the reason”, celine dion – and had written her this comment below at the bottom of this note when i was informed that Gypsy had found the old slide show I had made years ago representing part of my lost famililes and posted it in the entry just below this one.

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..

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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)

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

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

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

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

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

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

 only that it is so

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

 

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

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

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

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

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

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

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

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

*

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

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

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

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

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

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

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

*

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

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

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

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

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

so we reach out again and again trying to tell you

hoping hoping

that we reach somebody

anybody.

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

while you can

*

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

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

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

out,

Drake Aaron Phoenix

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

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

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

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

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

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

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

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

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

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

amy

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

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

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

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

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

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

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

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

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

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

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

oh God help us

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

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

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

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

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

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

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

*

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

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

 

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

 

*

 

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

 

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

 

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

*

 

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

 

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

 

*

 

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

 

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

A J destroyed me…

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

D

6-6-09 – Drake… our beloved luce-anne is dead… house fire too – there are still a few real heroes left

yeah this’ll probably be short.  we can hope anyway.  actually let me stop a second and thrwo up a quick prayer because if this isn’t very short that’ll mean i was unable to stop myself from going off and say thingsa i shouldnt say about some people. and i dont have the strength mentally emotinally physically anywhiuchway to go off

*

house fire several days ago. nobody was killed or seriously injured, including our pets.  and thats the thing for us because we’ve lost two family members and a;lmst two others to fire and another famikly member lost their home and pets.

j crired for days that she almost killed us and destroyed our kitchentrtying to cook for us.  our angel that we’d be in a nursing home except for her.  god give her peace please for gods sake please.

. mostly j keeps crying that she almost killed us.  but we kept telling her what our fam’s been through with fires and any fire in which nobody dies is a good fire.  and we have insurance. dsupposedly the best money can buy.  we’re fixing to find out if the big bucks we’ve been paying for years for the best insurance is gonna have been worth it

 john miraculously saved the house.  we have no kitchen though.  well actually we havehalf a kitchen.  the sink side. and half the house inclduing all our original artwork  has to be cleaned by smoke damage professionals.  \

then the construction people will come in and rebuiold our kitchen. we were offreed to be put up in a hotel with meals and all but wouldnt leave our pets so we sit almost busted having to buy fast food cause of our cachexia and all the time before jess came we cant hardly choke downa sandwich cause cant cook and selfish ass concerned with their own lives people living the life - shut up drake

*

then our beloved boxer, Lucy Anne (lu lu, luce-anne) died in a tragic accident the next day or day after its all blurred together in our dying mind – almost in front of our house in our mega quiet neighborhood where nothing ever happens when she oh god stepped out in to the street at the exact moment out of fuckingh street iun which nobody even goes down the dambn strett for soemtimes fuckinghours at a time.

lu loved everyone. every one. she loved mommny (Jess/Hom), nana (us)  and ___ best but she was a joy every where and to everyone. even people who didnt like dogs loved that dog. she went to petsmart regularly just to visit. well and spend half of hom’s chck on her baby, spending the other half on the _____.  that cant be right because thatleaves noithing. ok i exaggerated. b ut the point is even there she wasw loved and megaspoiled and peoploe would stop them going down the halls and say oh god thats the most beautiful boxer and most wonderful loveing one i ever saw!

jess dressed that dog.  no i’m not kidding.  we have a million picutres and stories.  now they will all be memories and not storeies.ohgod cant continue on that

and every single morning she gave us a mi,lllion morning kisses. every monrngin from her first day to her last. afer she got house trained sometimes she had to do a fast runby kiss kiss and run or if it was really almost too late dash outisde and then rush back in and kiss us to death.

oh god boxers slobber.  and she would kiss you throught the day, all day every day.  and kiss syou goodnight a hundred time – loving you with every bone in her body.  i never seen usch a loving dog. oh god how i could give anything to have her slobber me to death rightnow

she slepty on our feet.  jess finally left in and said find sleep with nana.  she got so big she had two pillows!   we kept one. cant let it go. gave the other to jess.

the day of the fire she was a big girl for the first time. at 7 months old.  i was collapsed on the patio and i had my gigantic gracie on one side of me and luce-anne with her chest puffed out so big she looked double her side and vicious ness coming outta her we didnt even know baby had in her.  those dogs were not letting those men examin me.   

 jess kept screaming at jnohn to get me in a chair before they arrived or they would for sure put me in the hospital paralized not undrestanding my cns bugs out in traumas and shit and willc ome baak in a while or day or two and he finally ran out threw me in the closest lawn chair and ran back in to the fire with sharon screaming hysterically leave the house! you mean more to me than the house!let the house go! let it go let it go let it goibut he saved it.

our firre alarm was working coprrectly and the battery was good. the fire cfaptian said those ones people buy in the sotres dontalways go off and people should go to them to get our fire alarms and we were like well why are the stores allowed to sell those!@ and he said he didnt know.  they gave us one of theirs.  jess checks it obsessively

but fire captan praised john to the highest.  john is a hazmet certified andevidfentyly did everything right.  he said john absoltuely saved the house and you can see the several places the fire made it almost all the way throughthe sheet rock and everyone knows it then travels instantaneously right up the wall and into the attack and thats the end of your house.  fire marshall said john had less than a minute left when he was able to turn the tide.

*

‘and jess placed our feet and hands in “normal’ positions as possible and stood behind our lawn chair holding our head up with her stomach unobtrusvieely and every time those firemen/ambulance guys would poke their head out and want toe exaning me our lucy alone only 7 months old would go oh no you are NOT getting anywhere near nana!!!!!

and jess would slightly bob my head from behind and assure whoever it was neuro disease and terminally illa dn tis hapens and i was fine just fine.  she later said she felt like weekent at bernies.  god i love her andher morbid humor in the face of disaster. it makes her fit in so perfet here.

and at first myb abya GRace  waws nowhere. i knew she was in the house looking for me.  i knew it.  she was the onlyh dog wouldn’t foolow me out. 

 well jess had to runinto the liing room and grab riely cause my cns was going and i knew it and i hade to make a sbnap decision that it would be much easier to grab my 4 pound dog and carry hinm and make it to the door and try to get us both out of the house whe n you couldent even see the person hardly nexts to you.  dude we knew our cns was going. sometimes you can feel the neeldle stings and burnsand you know and we knew they’d have a better chance getting riley than trying to get me in the what jess calls jello phase out of the house

spook would not leave john.  every damn time those men tried to exsamine me and oh belive me they just cracked that door they were obviously lafraid of my dogs and dint wanna havge to mace them spook would shove past them back to johnn  we told jess stop fucking running in the house and grabbing spook your not going to make it !   doesnt anybody knwo the you arent supposed to renenter a house fucking rule!  anywa that her man.  spook wouild rather die with john than die over his body.  just let her be with him

do you know how fucking fast a house burns down@!  this is not an old or fucked up house dude.  minutres. you have literally minutes from the first flame until your house is gone and whoever is in it is dead or cant finsigh that

*

but no GRace!  oh god where was our baby!  she had to be outside whent he fire strated and the smoke billopwing out the back door stopped her so she jumped through jess’ open window to get back ion to the ouse and was searching for me. 

and i think somebody was scream saving grace save grace and john scremaing i cant leave the fire!

 

then suddenly jess b  ooms her “hed-o baby” (her speciual call for grace, who jess always said our dogs were switched. she said your dog loves me more and mine loves yo more) anyway. 

 i guess grace heard that and assumed her jessie would never calle her if she didnt have mommy so our head happened to be facing jess’ window (that open window at the back of the house at the end of the laong hall was what causwed the back,ash=-like movie reaction of the wall of smoke whoosing down the fucking hall. 

anyway my eyes were there staring at that window and we felt we were screaming her name but evidently our voice was weak and so slurred she never hjeard us.  and she ignored jess calling her name until the hed-0 bab. 

and we started obsessively at that window pleading with god to make our  baby grace stop looking for us before the smoke inhalation got her and jumpt through the fucking open wind when she finally  responded to hed-0 baby

 

and i swear to god it was a lassie moment as that huge black dog came soaring full-tilt, full god 8 feet of her seems like strethced out through smoke billowning ouw the window. 

then gracie immediately  took up her spot on the other side of her mommy from lucy in the weekendin bernie situation and you could hear teh relieve in lu’s voice for a moment cause she was alone and just a baby but she waas by god gonna protect nana with her lfie against the terrified people covered in space suits and uniforms .

*

it funny how we were so hyperaware througha lll that.   like noticing that lucy took up position first alone – our 7 monmth olkd baby being a big girl for the first time and barrelling out that gigantic boxer chest and telling those “bad” guys with a bark the size that’d make any full 250 pound mastiff proud  ”i WILL eat you if you take one step more toward my nana” but interspersed she’d whimper for her doggie mommy – grace.

*

te first night we brought lucy home, she immediately i mean immeantieatly ran to grace and announced (swear to god, anybody there can testify) “your gonna be my mommy” (her mommy was brindle, our lu lu was fawn) and i guess huge black female dog was close enough to her to figure “hey new mommy”

and i wellw we kept telling hom do not let those men out here they’ll have to mace my dogs to examine us cause i’m telling you those weree big dogs and they meant business,  and our baby lucy would never recover emotinally from that.  and we knew the cns collapse would pass anywhere from a few minutes to a day or two

*

*

our beaatiful wonderful loving blessingfrom god luce-anne is dead.  it was a mniracle that if she had to die, she died happy and instantly (like our beloved anniethan k god), her and her doggie mommy grace running to each other.

our gift to jess/homcause they started crying they needed something of their very own so us and ________ diud exhaustive reasearch cause she’d had a mastiff/pit mix which was just out of the question first cause of size and our consitionand second cause too many okies are still terrified of pits.  but _+________ and i did the research, found a pup in th emastiff family that was the smalled of the mastiffs and went on and “adventure”and surprised our beloved Jess/homwith the baby for xmas last year. i cant ay anymore icant se for the tears now. thank you god i guess. i went off but you did keep me from saying anythi9ng i shouldnt about people i didnt wanna.  i’m still mad at you god but your god so ifigure you undersand

i held her cause my J asked me to and i got a chance to sneak and make sure our baby died instantly.  i hom to knwo she sdid not die like copper.  she died like annie with a beatufiful smile still on her face with one smalll injuiry – fucking fate in all the freakish things that made up this accident – hit in the fucking temple.

i had one wolf blanekt left.  they were my treasures.  ihad given one to a person who didn’t deserve the gift of such a treasure to me and one to jess that she’d had stolenf rom her in NYC.  i had burried annie in one.  that left me one. 

i asked john to get it and he said are you sure.  i was.  he knew from that that i was in charge i guess and that we wer going to bury her my wayt like we did annie, next to my beloved Annie. 

we gathered faorite toys and sticks and every treat we had we knew she loved that we had.  by thenf inally somebody sbhowed up.  the most wonderful friends of jess .  i asked thenm to put ice cream with lu’s treats and got this um you do unmderstand that its summer and thats gonna melt but I know my J and i knew what she wanted.  luce-anne loved ice cream.  she was getting ice cream. 

john and i dressed her in her obience graduation dress J was so proud of with her oh so cool princess hoodie on cause that’s what my J wanted.  and we placed her beautifully before J/hom viewed her one more time

J/hom couldn’t bear to bury her.  asked me to say the words.  so papa dug the grave and nana buried our baby for her mommy.

thjhere. i did the best i could. 

*

i’m stricken by part of our new tagline. I think its “if today is our last day”.  People PLEASE please don’t don’t waste your life on hates and grudges and getting back or whatever.  this is a prime example – from the fire to the loss of one of our babies – today could be your last day.

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

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

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

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

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

ayway so the list. 

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

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

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

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

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

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

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

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

*

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

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

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

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

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

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

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

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

 

*

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

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

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

offtopic again.  what a fucking shock sigh 

*

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

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

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

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

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

*

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

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

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