8-31-09 – Amy… we almost died again & Jeff Hardy’s gone (w vid)

Lostprophets wrote a song for/about Jeff Hardy called rooftops which begins with him saying “You want to know who I am”.  well he’s gone and I can’t believe  it.  I cannot believe that i missed seeing him in person by days, this man that’s been my p ersonal hero, and yeah a hero to others here too

 

 and now that unless by some miracle, i/we will never see him wrestle again -

 

the extreme enigma, the man who never quit, who couldn’t be beaten no matter how beat down he got, who pulled it outta his ass somehow some way every damn wall he found himself up against.  a man I personally admired yeah even idolized.  a person who so epitomized me, us, as a whole (and Drake here in particular).  he finally got beaten and he’s gone. 

 

ironically Jeff Hardy’s gone as we lay here dying.  and there’ll be no more jeff to watch and lift us up, encourage us, remind us we’re a fighter too,

 

no jeff to watch to remind us don’t let NOTHIN beat you. 

 

all there’ll be are memories and videos and such like the one i’ve put here on this note.  

 

just like some day probly soon, maybe today cause, hell we almost died again a week or 2 ago.  looks now like our colon failure might well be gonna take us out by causing respiratory failure.  and we’ve got a DNI so…

 

but just like jeff hardy’s gone, the man who endured and conquered so much that people started thinking he was invincible, he’ll get thru this one and this one and this one too.

 

but he didnt.  and we won’t either.  we knew for months from things being written online and rumors that his time was almost over but we couldn’t believe it – not Jeff hardy!!!  he NEVER quits!  he’ll never ever ever be beaten.  but eventually he was.

 

and like him, we will be too.  we’ll be gone soon too and there’ll be nothin left of us neither but memories and pictures and a few little videos.  oh and things people here have written.  i’ve left a piece of myself, no that’s wrong

 

pieces

 

and not i

 

we

 

we’ve left pieces of ourselves in writing for whoever cares whoever wants it whoever and whatever they choose to do with it and whether it makes any difference anywhere to anybody or not

 

before long thse pieces of ourselves in writing will be in the pile along with photographs and memories of us. and our story too’ll finally be done. 

 

when our time is up

when our lives are done…

will we make a mark this time?

will we always say we tried?

 

 

hell yeah we tried!   like jeff hardy, nobody nowhere no how will ever EVER be able to say TC didnt try

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

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

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

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

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

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

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

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

*

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

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

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

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

*

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

 to be sitting in a repaired yeah

all new and shiny and beautiful yeah

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

*

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

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

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

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

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

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

how do i compare this feeling? 

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

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

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

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

*

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

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

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

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

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

*

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

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

*

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

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

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

*

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

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

Drake, never say die or something

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..

*

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

6-21-09 – Cody… Rosie the puppy hates toya (youtube video Jess & I made tonite)

This is a vid Jess and I just took of Jess/Hom (and ours) new boxer puppy -  Rose Lu Ann – a little while ago cause its hilarious how she reacts every time this  video comes on.  The black dog’s head coming in and out of the vid is our labradoodle, Grace, checking on “her” baby.

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