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)

7-28-09 – Drake’s memorial show (courtesy of Gypsy)

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

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

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

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

I love you, Punky.

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

gypsy

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

6-13-09 – 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 – cody… the vid with that line “they shoot horses dont they” – absolutely NO kids or fragile people its graphic (addendums by Drake & Kelli)

I noticed on that little stat thing wp has that somebody had searched trying to find the song they shoot horses dont they.  its not a song.  it was a movie. a  tragic movie  whifch some here relate to in this end of our life.  i found the final scene in which that line is said.  the line is at the end of the scene

this is very graphic.  do not let any kids or i cant think of the word i dont wanna use weak thats not the  right word.gb ut  =dont let them view this

 

NOTE;  this is drake next day.  i think i ned to explain this saying because it dawwned on me that it might not be widely understood.  the ground is full of holes.  in the plains for  instance there are gopher holes and snake hooles and priarie dog holes.  when a horse is running, if it steps in one of these holes, it breaks its leg.  now i think tehy can sometimes fix horses broken legs, but it wasnt used to be that way.  the horse hade to be shot to be put out of its misery because there was no hope.  hence the man’s explanation “they shoot horses don’t they” (to cops question of why did this man help a woman who had had so many hard things and tragedies that she had lost all hope of there being any chance of any way to salvage any kindof life for herself so shebegged him and he helped her commit suicide  - added by kelli)

more note on 6-9 or something: its kelli.  i’m taking this video off.  i thinkits too violent.  its on youtube under they shoot horses dont they final scene if anybody wants to see it that bad

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.

5-26-09 – Drake… that’s the damn truth

It is the storm within that endangers, not the storm without.  …Ralph Waldo Emerson (1803-1882)