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)

6-10-09 – Kelli… for the one who called me “sunshine”

ok note:  i ended up rambling on some. 

its Kelli.  the point of this note is that i wanted to put a video here for someone i loved oh so much.  and believed in with all my heart.  i remember good and wonderful things about, and i hope this person does me as well.  supposedly i was his sunshine.  i hope his life is happy and blessed.  this song is for him .its at the end of this and  its a gift to remember me by.  if  its not wanted, then forget its here.

*

 i’ve been thinking a lot.  i never participated in any of the um situation which occurred in any way.  i never fought with anyone nor said bad of anyone.  i remained true to myself and who I am in these realms of what mults call the real world. 

 i  have always been called ”sweet, kind, gentle kelli” by everyone who has knownw me in this real world- and i admit it used to bug me and tick me off because i am a warrior in my world.   but now I think, you know, thank you.  thank you for descrbiing me in that way. 

but looking backj now, i don’t know if i was too “kind and gentle” and acted as who I am out here ihn this place called the word, because i waited quietly and in the background, certain in my heart, with all my heart, that the one who called me “sunshine” meant it and would… but that didn’t happen.

altho i never participated, i was eventually targeted real bad and hard, probly cause i was perceived as weak but mostly i think cause it was known by all that knew us personally that the fam here loves me deeply, and the attackers wanted to take all they could from our life.  \

thru just the atttack on me part, i was so thoroughly damaged that it knocked me on my ass for a very long time.  and i’m ashamed of that.  i am a warrior of the clan.  to have been so dessimated, an d not even fight back. 

well i’m ashamed that i folded.  i am not however ashamed that i never fought nor fought back.  i stayed true to myself, and for that i am proud.

but like everybody else here except our oldest left, sharon,and onlyh kinda so for her, i am only 15 and came after the body was so ill and debilitated and almost homebound so i know little of the world.  

i painfully came to understand that what small part (i am a quiet person) i did take part in the mult community, altho watching way much more, that what i witnessed was not a true reflection of  real “life”.  so like everybody else here but sharon, i have had virtually no actual socializationin the world. 

i’m not making extcuses.  i’m just trying to explain a little.  i’m still ashamed that i, a warrior of the clan, collapsed on my system for so longwhen they needed me.  and i intend to make of for it now.  and like I believe itsdrake who has said in some point in recent months, fortunately probly for us, due to certain effects upon our thot processes/memory in the last i think year or more especially, we remember very little of the negative things which happened.  and that is a true blessing to all of us cause we can now remember those we loved and smile. 

 i personally  feel blessed that my memories are almost allgood ones of the people i knew and loved.

so like the others here now in our last days getting us through this period, i have joined thgem again cause i am a hella good fronter with one fault – i don’t eat.  well except for chocolate and coke. 

oh i love chocolate.  but the guys, i think its mostly the guys are carrying that load altho since the fire and luce-anne’s death i think itwas about a week ago? we have lost about 7 of our precious pounds.  but thats random.  i dont know why i even included that

*

i know that at least drake for sure and I think maybe one of two others, but definitely NOT any of the others left, have said, I also want to add that i also don’t blame or hate or hold any grudges anymore. 

i dont think i have anything to apologize since like amy i never got involved, but if i did have a moment of weakness in which i hurt someone, i’,m so sorry.  please forgive me and please remember that today might not mnjust be our ,last day, it could be yours too.  so dont carry hates and stuff with you.  it doesnt really make any sense to in the end. 

 iif anyone who reads this is, or ends up like us knowing that your gonna die – you will come to understand that those things no matter how bad or traumatidc they were, well its really not important in the end.  whats important in the end is who you’ve loved and who has loved you, and good memories. 

Kelli

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.

5-29-09 – Kelli… wow quote about after we’re gone

Someone once asked me what I want on my epitaph. Just the words ‘I tried’. That’s what this game of life is all about. Trying. There’s the tryers, the criers and the liars.  … Mickey Rooney

 

I’m holding the front so far this morning.  we’re in such dire straits here with the disease progression essentially killing off our fronters one by one (well not literally – rendering nonnfunctional would be a better choice of words probly) or damaging us to the point we cant front good.  and too about half us left cant front around um some people cause we’re too different and so not “acceptable”.  we try so hard to live longer for them – and dude that is not easy cause this is fucking hell and sufferng every minute of every day and nite – and we’re still not ”acceptable”.  just fucking shoot me dude and be done with it. damn

actually i happen to be one of the “acceptable” ones cause the family things I’m Sue (the host).  evidently I’m a LOT like her.  only prob is i cant eat so

 and theres like huge  life shit going on and oh dude we are so notn able to deal with regular life shit no more.  we panic we freeze up we wig out we get irrational we get confused we dont understand shit said to us.  oh gawd its a fucking nitemare. 

we dont need nobody to pile the guilt on us no more – altho it happens like oh all the time.  we do plenty good enough job of that on our own.  dont need no more help with that.  thanks tho.  now go away  ignore that.  i was having an immature moment

gawd we’re so damaged.  it makes me sick.  literally sick.  like for instance we’re always sick in the morning.  always. but  i literally got more than our usual morning sick from the opium  this morningn that i  almost passed out just cause something stupid and small to a “normal/well” person fucking upset my damnittohel fucking equilibrium and almost knocked me down – as i down i can’t function down. 

 i did fall down at least 2 times this morning in the sick and feeling like i was gonna faint spell.  like hit the floor fell and thats kinda unusual for us cause like all the other members of our fam witht his disease, we’ve mastered what the pros call the “controlled fall”.  in other words we can fall and look like we’ve broke our fool neck but fell “right” so didnt hurt nothing – or not bad anyway

anwayfucking way

gawd ever last one of us is affected by this and many other abilities lost.  not a damn one of us can stay on topic or type like shit anymore or spell like shit.  and evidently we were the best once upone a time dude.  made a career outta it.    now cause of our disease is in our brain and the progression we’re all affected and this is yet another case in point

as i was saying

anywayfucking way actually i’m one of the ones that’s a crappy fronter since the cachexia hit cause i dont eat – well unless its chocolate.  oh dude i love chocolate!   in fact i think there’s one of them rocky road brownies from city bites left from john getting us dinner last nite cause dude since the cachexia hit we get anything to eat we even fucking mention we might be able to eat. dude they literally feedus anything we can and will eat now. 

those here that eat are all about it.  i’m just like um i cant do that – but i can eat some chocolate.  so if one of them brownies is still there, i’m calling dibs.

anyway i’m like a crappy front er and can only front between meals.  how inadequate does that make me feel?  fucking fucking sigh

anyway i was looking thru Drake’s daily quote thing he’s got for years cause he loves quotes and i saw this one and i was like wow how many times have people here said exactly that!   that we just want so bad for people to realize when we’re gone that we tried.  oh yeah we’ve made hella lot of mistakes.  and some hella huge ones.  but we’ve never stopped trying.  and god please please i the end let the fact that we never stopped trying make a difference.  please

anyway this spoke to me so here it is

kelli

 

5-16-09 – Drake… they shoot horses, dont they?

the pain today is unbearable.  aside from our regular usual pain that we’re on kill an elephant-sized meds for, including a fuckng opium patch, the back of our head at the cerebellum region, our back and our llegs are on fire today.  fire.  like literally you could look down and see fucking flames.  the agony is indescribable. 

and thats with the opium pain patch dose increased several weeks ago. oh and the xanax doubled – we’re now on bars. 

i didn’t even know xanax came in fucking bars.  the hyper doses of xanax are partly to help our increasing probs with anxiety, spells of confusion and irrationality and hysteria as our mind/memory goes due to disease progression and neurologic hits from all those fucking surgeries and the cachexia and god only knows what else – and still having enough brain left to know we’re losing it (yeah that sucks ass for real). and its partly because xanax boosts some of the pain meds we’re chronically on.  so xanax bars it is.  fuck maybe i’ll take another.  like what would it do to me?  really? 

  i know some of the overwhelmind physical miserty today is the weather too.  in spring and fall here when it rains so much (the rest of the year, our region is semi-arid), the mold count kills us pain-wise.  also our damn stomach and colon which have been through so much and are so dramatically infected with our disease are working in perfect tandem to fuck us up and make every moment of our life one of misery. 

we may have to go to specialists again and shit and see if there’s anything left that can be done but we know we could end up on bags – and that falls under our DNI papers.  in other words, we’re not fucking doing that. 

So we get told how dying in either of those ways is an horrific way to die.  thanks.  really.  fucking sigh 

i know they mean well.  they want us as comfortable as possible in this end-stage, but we drew our line in the sand like we’ve had to do in other situations in our life before – NO intubation.  we’re not backing off it.  not.  if God decides to be merciful He’ll spare us either of thsoe particularly gruesome deaths

also its three days now to our son’s death day.  actually we were very sane last year.  i think we were too sick to be too nutty.  and we’ve been very sane for us in this time this year.  until today.  today I think a straight jacket might be in order. 

 if we had knock us out pills, we’d fucking take them.  oh we have plenty of kill us pills by just taking a liiiittttttle too much.  but no knock out pills.  Sometimes our aversion and fear of meds sucks ass.  this is one of those days.  I’d give anything for a damn pill that’d knock me the fuck out today. and tomorrow.  and the next day.

and then there’s the element of this morning’s melt-down over findign the back door not only NOT locked last night, but not even closed good.  dude.  the shadow people came in on us in thenight and took us through unlocked/open doors and windows.  and i’m not revealing any new secret in saying it – that was taken care of a long time ago.  fuckiing sigh

so the morning melt-down over that sucked what was left of our strenght – and we’ve already  been on a walker mostly for days even around the house and essentially bedfast.  and sleeping all the time. 

what?!?!  dude we have life-long sleep deprivation!  what the fuck  is up with the sleeping all thetime now?  hell the other day we fell asleep during a hand of cards!  and that’s just one example.  oh my god.  seriously.

the hom enurse says our body is essentially kinda inwig-out mode and thinks that sleep will “heal” us or some shit.  i’m not sure that made sense.  anyway evidently our body is tryng to make us better by knocking us whenever it damn well pleases.  nice.  actually now would b a good time for oneof those spells

oh yeah and so also tonight is a memory night.  we have got to go.  there is no out, no question about it.  it doesnt matter one fuck how we feel or if we’re able.  we absolutely will NOT miss ANY chances to make a memory with our loved ones with the time we have left.

did i mention our severe hypoglycemia we’ve ehad since we were like 20 or someting is kicking our ass?  yeah that’s fun too. 

ok i’m donewhining like a girl.  i alreadycried like one today.  figured i might as well whine like one for a while too. 

at least i’mholding thefront so girls dont have to.  I’ve been knocking myself out to hold the front as much as possible especiallys ince the last system colapse a month or two or whatever that was.   the few of us that were left only some of us have made it back at least pretty functional and the rest are either still out or not able to front much so we’re like half down from what we had left.

ok i’m really done now.  havent eaten a bite tdaoy and the inside shakes just hit.  that gives us anywhere from like now to maybe 30 minutes to get food in us before we go down or pass out or whatever it is we’re doing. 

 are you passed out essentially if you cant talk or move?  gawd i wish we had died this last time when we were supposed to. miracle my ass.   now all we are is a progressing mess and burden on the two angels fromGod taking care of us.

i keep tellng myself, we all do thats left, that if our loved ones remember more good than bad about us after we’re gone then this hellish battle to live longer for them will be worth it.

oh yeah i listened to my music for hours today.  damn but i’m a fucking depressing person to listen to his musci.  in fact i changed all the descriptions on every one of my playlists to “they shoot horses don’t they” (if that makes no sense, look up the movie of the same name’s description) ok than was random.  out

shoot me (homage to our sweet Kelli)

drake

3-18-09 – Cody… “lose yourself” video for Amy who loves Eminem

  

*

I know your overwhelmed and have such a hella load on your shoulders for a long time  now.  Hang tough baby girl.

be encouraged.

…and i’m done.

Cody

2-13-09 – Gypsy… good lord

so its nnot enough that we have to be freakiing dying and all the suffering and pain and all around shit around that. nor that we had that weird lymphadenitis thing for months that was living hell, getting so bad that it literally broke one of our teeth. no i am nnot kidding.

one of the gigantic lymph nnodes literally pushed a GOOD tooth out of socket and broke the fucker in half. oh and then when the dentist tries to pull it like oh 2 months fucking later – after we FINALLY get released from the specialist and shit that ok we wasnt gonna die from it and it had finally gone awy after 3 or maybe 4 rounds of super antibiotics and even just one more time and boom in the hospital. oh yeah or lose any weight. that too. no pressure tho. god

ok so anyway not enough that when the dentist ttries to pull the damn perfectly normal tooth broken in half by a lymph node

give me a break. who does that happen to? seriously. who? I’ll wait

like NOBODY! just us. that’s it. happens to us

topic. stay on fucking topic. so anyway get this

the freaking dentist breaks the pre-lymphadenitis perfect tooth already broke again trying to pull it! so then the tooth was 3 pieces!!!!!!

ANNNNDDDDDDDDD

no amount of anesthetic or nerve deadening whatever he had would deaden it so the tooth was finally pulled without anesthesia. no i am not kidding

so yeah all that and the tooth extraction from hell just wasnt enough

no

then we get told 2-3 days later – hell damn we couldnt even EAT yet again -

well i’ll just say Amy calls it the atomic bomb that got dumped on our head

ok so that’s not enough either. nah not for us cause TC can just fucking take and deal with anything dontcha know?

so then stupid insurance i hate them decides yet again at the last minute not to give us our nausea med. oh and get this – we find out that we was wrong. that nausea med does not cost about 1,000 a month. it cost almost 2,000!!!!!!! what?! seriously. and that’s generic dude. fucking generic

ok so nsurance again decides yeah they aint paying that med only we got to have that speficic med and only that med or the opium throws us in to uncontrollable vomiting that just dont stop and hospital and disaster here we come. and we cant take off the opiate patch cause

well duh cause its fucking opium!

so Jess fights on the fucking phone for like 7 hours that day. and she somehow gets a nurse a our doc’s office, some person at hte state insurance board AND some person at the state medicare office to all stay late til after 6 trying to get that med thru and to us before we started the vomiting some time within the next oh couple hours by then. and she gets that done and then breaks down on us!

oh god jess dont break down. she’s like the strongest person i ever seen in my freaking life.

so what’d we do? w hat could we do? like Amy told the T that comes here now (oh aint that grand too? we so bad off we have even the T coming to us now. kill me)

anyway so amy tells the T at that point we could only do one thing even tho we had just had the tooth extraction from hell, the atomic bomb to the head, could hardlyl stand up, oh and aint got a dime -

but what’d ya do? hell you fcucking pull yourself together cause after all you ARE THE TC

and you take Hom shopping like you’d do any teen falling aparnt and let them buy something frivolous. and credit card in hand, that’s just what we did.

ok so that’s enough right? i mean even the awful horrible maligned terrible evil blah blah yadda yadda TC outta get just a tiny break for a bit by then wouldnt ya think? nah

so then Gracie starts walking with her head low and weird and strange looks o her face and acting all weird and shit about a week ago. and stops playing! she’s freaking 1!!!!!

and we’re like what the hell? so then last nite at 1:36 (yeah get this – our brain is dying ut that wigged us out collectively so bad that the fucking time is imbedded in our head)

anyway so at 1:36 a.mm grace wakes us up standing beside our bed with her head laying on the side and her face right inn ours

CRYING!!!!!

oh

my

god

So Drake of course immediatelyl lurhces or gets thrown or something to the front and immediately goes in to flashbacks over Annie suddenly getting a little cough and being dead – ate up with cancer of the heart and lungs – in literally like 3-4 weeks later she was dead. she was 2! dude she was 2

and she’d come stand beside our bed just like Grace did last nite and stare at us and lay her head in our face and moan and cry

ok so drake wigs out for like hours. we finally get hold of things but then course can’t sleep. so 1:36 a.m. was when we “got up” today

so John just gets back from the vet with Grace where we made him take her 1st thing when he got home cause of the wig out factor. and i’ll lbe damned if she dont have a torn ACL!

a WHAT?!?!?!?!

gawd we had to go thru every memory bank we have left to know what the fuck is that!

anyway so jshe gotta have surgery asap. for real. not even kidding or fucking around at all. too damn beaten down and traumatized for that even if i wanted to.

ok kok so the up side

I’m sounding like amy to myself. shoot me

the up side is that Sharon suddenly is just here last nite – FUNCTIONAL too. WHAT?!?!?!?! well we dont know yet really wether that’s an up side or down cause she’s like being assessed or some shit to see if there’s like any hope that’s she’s actually pulled herself up yet again or if last nite was just a fluke or if she’ll do a Sue and Susan (theother 2 moms)) and just show up ever great now and then forever.

if its a down thing that sharn’s shown up somehow, i’m just killing myself cause you can just stic a fork in me and call me done. i cant take no more. seriously

Gypsy

2-7-09 – Gypsy… So “super bitch” Jess saved the day yet again

So yesterday Jess/Hom saved the day again. They’re our freaking hero, i swear to God. I know shey/they aint perfect, but oh there’s no words. i defintely am not a mushy person but theres just no words for what Hom means to us. and this today crisis thing is an example of why. just one exmple.

and they do shit like this for us all the time. and take care of us and feed us and take care of our house and make it possible for us to spend as much time as possible with our babies and hold us when we’re sick and hold our head when we throw up and sit beside us when they’re afraid to leae us alone

oh and the really big one – be the best friend and most fun companion we ever had in our life – any of us

and i could just go on and on but wont

anyway so yesterday was another meds crisis of such huge proportions that I dont think I could make it clearly understood how big it was no matter how hard I tried. Basically, one of the oh so fun and great parts of our life nowand forever til we die horrors is the opiate pain patch. oh god we hate the patch. frst its just terrifying to wear. you have to be so careful with it. there’s acciddntal deaaths of people wearing them. theres more but i aint gonna talk about it.

but the biggest and most ongoing off and on pain inthe ass thing about it is that unfortunately that damn opium makes us so fucking sick (oh yeah and our break-thru meds are both morphoids and they make us sick too). anyway so that shit makes us so sick that nothing, i mean nothing, below cancer-patient level nausea meds work on us so that we can tolerate it. and even with that, we still get sick and heave and throw up some anyways.

but ok so yesterday there was yet another crisis with the insurance company arguing that we aint a cancer patient so the docs can just give us something else for nausea. yeah i know why. cause the generic – the GENERIC dude – of that nausea med costs over $1,000 a month to our insurance. and we’re already costing them a fortune so they dont wanna pay it

only prob is this happened like at noon on fucking FRIDAY and we had just took our last nausea dose in the morning. so that meant that by evening we’d either be heaving and throwing up and would continue to do it all thru the weekend and maybe throw ourself into another huge cachexia crisis we couldnt bounce out of this time or somebody here get just fucking done with it and take the damn patch off – which would throw us in to withrdawals from opium – which could likely kill us cause we’re so sick and weak duh

anyway so this opiate patch is the end of the line for end-stage pain patients – the dreaded patch. oh maybe theres more things but nothing else out of institutional setting I dont think or that’s not invasicve for sure. and we took care of that one.

we searched and found theonly legal way in our state to get a DNI that cant be revoked by a panicked family member or over-zealous doc. and if it is, they gotta remove it. in it, we also opted out of TPN (total parenteral nutritiion) so that means its all on our back now – the whole fucker. we live or die now based solely on whether we can take in enough calories with our cachexia and can pull out of cachectic slides.

why’d we do that? cause we have terrrors all around of dying in a nursing home hooked up to tubes and kept alive artifically. so like I said we found a way to see that doesnt happen to us. God says when we die now. well Him and us, our will to live, our determination to keep givingit all we got to live long enough tht the babies’ will all be old enough to have firm solid happy memores about us.

its almost all about them now. we pull t together and turn it on for them. they are our treasres and we despearately want them to have wonderful memroies of nana.

we also pull it together mch as we can for the kids and johnn and Jess and our pets. but this time is mostly about the babies. and every tiem they hug us and love us and tell us how much we mean to them and how happy they are to be wtih us and we are their treasure, it fuels the fire in us to keep up the fight to live as long as possible.

and god bless jess and john. he was about at the end of being able to keep us home alone and our health had deteriorated tot he piont that we were about to be forced in to a nursing homewhen jess/hom stepped in. we were later told we had maybe 1-2 months left at home when Hom came.

Jess has said many ties that they came after our surgeries to take care of us so we wouldn’t get sent to sklled nursing facilities and then went home. but that after the last big one a year ago, they went home and couldnt stop thinking aboutus cause they just knew we were fixing to get thrown in a nursing home.

see in our state if you hve around the clock care and are being taken good care, you cant be forced into a nursing home no matter how bad you get. our prob was we didnt have around the clock care and no way to get it. so Hom went home after that last surgery we survved that nobody really thot we could and then came back to stay a couple months later.

Jess said hell she had already left where she grew up and moved across the country years ago, she might as well go to oklahoma for a while and be there for the best friend she’d ever had – who’d done so much for her/them – and be the other half of the around the clock care so we could stay home to die.

So Hom came, and they’ve been here almost a year now. and you know, i definitely dont have any freaking rose-colored glasses, and I know she/they arent perfect, but Jess/Hom is remarkable. who does that for people anymore? who? go ahead, I’ll wait.

like virtually NOBODY

what we’re WAY more used to is being “loved” and used up and taken from with nothing returned til whoever is done with us and then dropped and/or annihilated by ungrateful sociopaths

um ok stopping there ggetting off topic

so ok. damn shit and fuck can i stay on topic anymore? yeah the answer’s no. anyway

so insurance decides to go dick on us again on friday afternoon about our nausea med for the opiate patch and we’d just taken our last pill. then super-Jess went in to action. or as she calls herself in that mode “super bitch” lol

she called everybody. she went to the doc. she went to the pharmacy. she called the insurance commission. she called more people she hadn’t thot of.

and you know what? she got the fucking nausea med.

I donno what rewards Jess/Hom will get in this world for what they’re doing for us but I know they’re gonna have so many stars on her crown iin heaven that God’ll have to make their neck stronger to hold it up.

ok yeah i’m done. i’ve exhuasted myself.

Gypsy

11-18-08 – Gypsy… yeah so I’m gonna write damn it

Nobody’s journalled in almost a year since before the giant life trauma which we lost but won.  isnt that just a freaking microcosm of life?   ok that was random

 

anway  some like me want to journal again and be open on myspace like almost everyfreaingbody else again, need to.  I need to damn it.  Why should we all be  silenced forever when we don’t have to be?  The judge almost a year ago now said flat-out we can do and say whatever we want. we have the same damn freedom of speech as anybody.

 

 

There’s been a lot of in-fighting about this for a while among those of us who want to write again and those who want to stay silent, and each side has people wtih us.  so its not been pleasant inside. 

 

Drake’s been considering for a while now opening things back up since some here, including him too damn it, are wanting to journal agin and just damnn open up, and since anybody who’d try to do anything to us again would be real stupid and/or nuts to well act stupd and/or nuts on us again.   he’s even written a thing about opening back uop. b ut that was weeks ago. at least weeks. maybe more.  and he aint done it and i’m tired of waiting

 

Ok so yeah I understand and get it that Drake blames himself for every damn thing.  my god, the news could inform us that a earth-ending comet is gonna strike us, and he’d somehow make it his fault.  I’ve never seen anybody get so mind-fucked as him. 

 

But I’m not Drake.  I’m me.  And, he’s not the only wolf here.  And, like him, my personality epitomizes the personality of the wolf in many ways.  and I want, hell I NEED, to figuratively stand again and “howl”.  I have a voice, and I will not die silenced.  i damn well aint gonna die in a hole

 

ok so now I start talking

 

 

We survived against all odds yet again.  not one doc thot we were gonna.  but we did.  We’re left end-stage now tho, with this eating-away complication whatever called cachexia.  cachexia is a bitch.  home health, aide every day, end-stage care which the major qualification in this state to get is that the patient HAS to require nursing-home level care.  that’s just fuckiing terrifying.  no really

 

we now qualify for home doc visits too.  thinkig about that one.  qualify too for home T.  thinking about that one too altho not as intensely. 

 

also have a cant be broken DNI (do not intubate) finally in effect which hd to be done a certain legal way including PCP (main doc) going along with it and signing it so our life-span – well we’ll see how that pans out.  we’ll go when God says we go

 

we’ve been on a opiate pain patch for months now and i could write volumes about that. a nd i probly will

 

 

Jess/Hom came across country last year to take care of us for 2 of our 3 surgeries, I think.  maybe all of them.  I dont remember.  that’s another progression in our disease.  memory fucked.  spelling fucked.  just about everything fucked actually.

 

anyway then they came over 7 months ago to stay to help the man keep us at home to allow us to die at home.  God bless them bboth.  now for months, they’ve been our aide and they have another job that makes a little over a full-time job put together.  we’re hella proud of them.  hella proud

 

Many of us, and that icludes me, have come to love Jess/hom or love them more.  no way around it, they’re a freaking hero.  i got volumes in me regarding that too.  its been too long since i’ve written

 

 

anyway so we lost over 90 pounds, hve strugged with everytihng in us and by the grace of God, and Jess/Hom coming to take care of us and cook us food we can eat, we’ve gained back 20-24.   i say that cuase we had maintained at 22-24 weight gain that we achieved a few momths after the 3rd and biggest surgery, the gigantic one.  but 4 lbs down this week.  partly from stress and partly from no dairy. 

 

yeahh our dairy intolerance finally decided to kick our ass and make us vomit all the damn time that the opiate aint making us vomit or feel like we need to.  and we’ve spent months trying to figure out a way to get the nausea at least down to a level we can deal cause we’re essentially mostly vegetarian and dairy is in like hell at least half the things we eat and makes up the bulk of our protein.  workng on it

 

they say its impossible for us to ever be above micro size again.  and now with the DNI which means we aint doing that damn TPN feeding crap to prolong our life, w e gotta stay on top of the weight and deal fast and hard with the slides or we’ll be dying sooner rather than later.

 

i’m closing this now.  john and Jess are off picking ______ up from __________ for TNT.  that means total ______ time, meaning she gets us to herself and dont gotta share us. she made that up.  how cute is that! 

 

i just said you know what fuck it, i’m writing.  and i did. 

 

Gypsy