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

 

5-28-09 – amy… so there was a double murder here yesterday and Jess/Hom had another “i’m in an alien land” experience *wry grin*

so there was a double murder here yesterday.  it was a local guy our girls’ age who killed his pregnant girfriend – who was from the city i guess cause nobody knew her evidently.  all the talk was about him anyways that’s all i know

  and, this being a small town, like everybody either knew the guy who did it – whether they hung out together in high school or years since or not - or knew of him.  not that long ago in fact, one of our family members took him home from a party cause he was drunk and they wouldnt let him drive.

anyway course i knew when the manhunt was going on cause just as i heard the helicoptors  near my house, I got a call from _______, who lives in the next neighborhood, screaming into the phone that police coptors were all over the top of her house as she got home, so she ran in and turned on the tv – and saw this person flashed on the screen that the whole town here knows and the reporter talking about the double murder and manhunt going on in our area – which happened to be like right on top of HER house. 

so she totally wigged out, called here and was screaming what do I do what do I do cause she had a little kid with her.  I couldn’t even think so told ok hold on and John would be there in a minute, and she was like what good is that gonna do?  and I was like um well I donno – he’s JOHN (like he can take care of everything or somehing – kinda funny in retrospect)

anyway so what she did was kept me on the phone, grabbed the kid, and ran out thru the garage door and jumped in her truck and took off over here.  just as she got here, it was flashing on the news that they’d just found his body – in the trees behind her house.   he had killed himself. 

* 

k this is the plains – no place to run, no place to hide.  there’s like treees in the neighbors and along creekbeds – but thats pretty much it here except for the occasional tree or few along roads or in fields.  and I remembered back several years ago when that truckload of illegal aliens got stopped by feds on the interstate just outside the far end of our neighborhood – and they jumped outta the truck, attacking and overtaking some of the cops – and then all took off – into OUR neighborhood and the one next to it.  and for hours, our very neighborhood was on CNN and all them big news networks while the manhunt went on cause they’d hurt a couple them cops real bad. 

and there was coptors and cops everywhere flying just over the housetops and stuff, and they was telling people on tv and stuff to get in our houses, get all our pets in the house too cause these people were jumping fences and trying to hide in our back buildings and pool houses and stuff and get in to houses.  oh and there was police dogs everywhere  and all the dogs in the neighborhood, including ours was just going nuts.  and it ws really terrifying

i think ____ lived here at the time but was at work and John was too or somewhere or something and we was alone. 

since there literally really aint no place to run or hide out here – unless your able to invade somebody’s house or something – and then the cops got you cornered anyways,  about half them aliens ended up just standing on a street corner waiting for a cop to drive by and go ahead and arrest them afer realizing there wasnt no place to hide and they couldn’t even get a drink of water or nothing.

anyway i remember somebody here writing the list about it back before the online attack started against us  and they punished us/”got” us by highjackiing the list – and traumatizing so many innocent people just to hurt us. 

anyway i remember somebody here wrote the list that there was aliens everywhere and we was scared and how whoever here forgot to put in the note “illegal aliens” – and our friends laughed at us forever about the “alien invasion” we had.  it was funny tho.  good memory

anyway random

anyway so I was thinking and thinking, and i believe the last murders around here was like 15-20 years ago when ______’s sister and kids was murdered by her ex.  

* 

sooooooooo  (sheesh can anybody here get to the point anymore?)

Jess comes home from work later yesterday and was all talking about how all she heard all day was about the murders and could you believe it?!?!?!  and could you believe who did it?!?!?!?! 

customers and just everybody was talking about nothing else, and she said it was kinda overwhelming cause she was like did EVERYBODY know this dude?  

and I told her yeah that like never happens here and its been about 20 years since the last murders and probly 7-8 since the “alien invasion”

and how I’d been thinking about her and kinda laughing cause i figured she was there at work listening to all this goings on about it all and thinking so? since she’s from new york and all.  and she laughed her head off and was like yeah exactly!    

she said for a while she started getting kinda sucked in to the drama and then reminded herself where she was from, and that people get murdered and stuff daily there, and then had to struggle to keep from morbidly laughing about how this event was sooooooooooooo major here that that’s all anybody and everybody could talk about all day. 

 i’ll never forget that - poor Jess/hom yet again getting slapped upside the head feeling like an alien in an alien land.  its a tragic situation yeah but her reaction was morbidly funny

amy

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)

5-26-09 – Drake… Gilda knew – quote on dogs

I greatly admire Gilda Radner – one of the original SNL cast, and a person who actually led a quite difficult and tragic life at times, and who died very young of cancer.  I admire her so much that, during the hard online time, I made a addy for a while “GildaKnew”, referencing to a quote I’ve had on my sites for years which she said while dying. 

Gilda wasn’t just one of the funniest people who ever lived IMO, but that woman made some very astute observations.  Here is one…

I think dogs are the most amazing creatures because they give unconditional love. They are the role model for being alive.  …Gilda Radner 

*

People here have always loved dogs; but, in this end-time of our life, we have learned more about them than we even thought was possible to know while we’ve spent our days – and nights – in such close quarters with ours.  I guess you learn a lot about someone (or another species *wry grin*)  when you spend months, now turning in to years being so ill that your on home health/end-stage care, confined in large part to your house, especially your bed. 

Dog ARE loyal and wonderful.  They love you no matter what.  They think you are the most great thing since people bites *g*. 

They will cuddle and love on you, play gently with you.  And some of our greatest memories, particularly in these last 2+ years have been of times with our dogs – tmes in which they make a tremendous difference in our life – even bolstering our will to fight to live another day.   or even – like now because we feel like shit and are so weak – they’ll lie peacefully and happy just to be near you – and I know damn well they are convinced they’re protecting you – surrounding you with their bodies, freely giving of mountainous vibes of love. 

Our dogs make certain we are never alone.  Riley does’t really count in that regard since he’s 18, blind, almost deaf, and totally dependent on us, so spends the vast majority of his time on his pillow beside our head on in the arms of one of us, Jess or ____.   but generally, we have at least three of them around us; and, when we are doing really bad, these dogs will literally take turns “watching over us”, making certain that we are always surrounded by at leasat several of them ever minute in these times. 

When the pain is so bad we can’t stand it, they’ll literally wrap themselves around you as if they’re giving you some of their strength.  I do know that their body warmth helps.  And there’s no value which is possible to even be placed on the encouragement and morale-boosting they give.

They remember you, are there for you, when almost everyone else in the world has become worn out watching you slowly slip away – you are their life, clean and simple.  You are important to them.   They will never betray you nor let you down.  They bring humor and silliness – and can always bring a smile – no matter how bad the sickness and/or pain and/or emotional pain is on any given day.   When you feel overwhelmed, they will lay their head on your shoulder (or head lol) or will literally put their “arm” around you and lie next to you.

And, n our case – being mult – they KNOW us – they really know us.  In fact, they love us all, but they each have indviduals here which they are most attached to.

I know I’m being all hokey and shit, but in my personal opinion, I think dogs can be a miracle to person, and that they are one of the greatst gifts God gave mankind.  So, when I saw this quote from Gilda Radner this morning, I just had to post it and ramble on about it a bit. 

Drake

5-26-09 – Drake… for J

 

5-25-09 – Drake… wouldn’t this be nice?

 

sometiems i feel convinced we’re going to die still craving to just be accepted by all those we love so much.

5-24-09 – Drake… so Jess/Hom’s having their first real party – a pool party – how suburban is that? *g*

Jess/hom is having a pool party.  I’ve never seen anybody so excited and happy in my life.  She’s been working on this since yesterday – when she decided to have a party since the pool is open.  By the time this afternoon had arrived, it had grown from 3-4 friends coming over to swim and visit to about 20-25 of her friends, kids and all.  the new slide we bought this year is a huge success.  that was random

Anyway J is beside herself with happiness.  and I lost count of the number of panic attacks she had before people started arriving so I’m glad she’s having fun.

John even got all in the mood and went to the store and is now grilling.  and J called all her friends who were coming and told them what we told her thad people here in oklahoma do – call and tell them we’re supplying the meat, and they can bring whatever they want IF they want.  so its grown to a full-fledged cook-out. 

she came in a bit ago and announced that this is the best party she’s ever had.  then she said “no! this is the FIRST party I’ve ever had – the first REAL party!!!!”  she being so cute and funny about it.  its so heart-warming to see all the positive changes in her/their life and how much they’ve grown and matured – and how they’re building a social life for themself now that revolves around things well that everybody does. 

* 

Then she had to turn on that thing she does.  Do all chic have a “thing”? 

anyway

begging me to make an appearance (we’ve been sick a long time and well we’re going downhill pretty fast for a while now – but tht’s not for this post.  

So I was like yeah ok sure.  and thats when the “girl thing” came out…

and see it (because oh yeah the “girl thing” is totally recognizable – has been with every female I’ve ever known 3D anyway)

and it dawned on me that she wanted ME to make an appearance!!!!  

  I was like “seriously.  are you kidding me?  You want ME – ME – t0 show up”.   (ok for those who don’t know – I am 16.  I am not mature.  I am a guy.  I cannot “do/pass” as female.  I can’t alter my voice – which is very male – and no matter how hard I try evidently I put out some vibe or some shit I don’t know.)

oh she was serious all right – all “oh please paaaalllleeeaaaassseee!!!!  just for a minute.  for meeeeeeeeee (eye bat eye bat)  you don’t even have to say anything.  you can just let me see you and that’s all.”

So I did.  yes I did.  I went right out there – as my fucking self – and even stayed for like 10-15 minutes.  And t was worth it because, as I was going back inside, she threw her arms around me and kissed me on the cheek and thanked me and was like “oh i love you i love you i love you!  You did this for me!  Your so wonderful!”

You know… I much prefer it when girls say that kind of shit to me.  positive reinforcement works for me.  yep it does

Drake

5-18-09 – somebody. we’ll say sharon since she’s the only mom left tho we all grief. yeah we’re nuts. nuttier than yesterday but not as much as tomorrow

Tomorrow is the anniversary of the day our son was born. and died.  actually Chris’ birthday is the 20th but we were in labor all day on the 19th and he was born right after midnight so to us the 19th is the day.  that’s why Sharon’s 19 altho she’s always said she’s 20.  well we almost were.  our birthday is in a few days.  our beloved baby had nothing in his throat.  nothing.  no esophagus.  no trachea.  he lived until the placenta separated with the docs desperately trying to figure out a way to save his life. he was conscious. when his life support – us – separated from our body, our belovd baby son strangled to death. conscious. god

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