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

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

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

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

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

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

6-19-09 – gypsy… figured it was time for a G vid

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

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

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

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

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

amy

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

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

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

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

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

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

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

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

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

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

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

oh God help us

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

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

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

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

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

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

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

*

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

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

 

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

 

*

 

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

 

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

 

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

*

 

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

 

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

 

*

 

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

 

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

A J destroyed me…

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

D

6-10-09 – Gypsy… Our Playlists’ Link

Rise8 IMEEM 

here’s the link for our IMEEM playlists.  its also in the”FOR THE RECORD” on the widgets side, but here it is as an entry too just cause i feel all accomodating and shit. 

they are works in progress.  visit/listen to them if you wanna.  don’t if you don’t.  comment if you wanna and can be nice.  I wouldn’t recommend it if you can’t.

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

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