Saturday, August 30, 2008

News and bored...

Current mood: creative


Hello hello :)
Here's the latest... I went to my blood doctor late last week and was told that the blood aspect of my illness (the paart where my blood was attacking itself) is in.... REMISSION! That is the really life threatening portion that required the plasmapheresis treatments and catheters, etc...... So the constant threat of rehospitalization is not an issue at the moment! Now I'm just trying toget my Kidney's up and running.... I'm still bruising very wierd (they spiderweb out in little dots?!) and easily and they don't go away for a long time then (still have LOTS of the bruises I had two weeks before I left the hospital!) so my Nephrologist is hesitant to do a kidney biopsy still because of the risk of bleeding.... SO I still have no idea why I am spilling so much protein in my urine.... It is decreasing a bit at last testing but it is still like monumentally high.... SO I am self treating myself homeopathically, seeing my chiropractor and getting acupuncture as well and still taking my meds.... I'm curious to see if the homeopathic and chiropractic treatments will make a difference when I go get my tests on tuesday.... I also started Water Therapy yesterday... today was my second class and I'm feeling a little stronger already and lost another couple pounds of water weight (from the compression in the pool)... Thats about all I have to report on the health side of things.... btw most low sodium food SUCKS serious buttcheeks! On a more fun note... I went to the thrift store for the first time in FOREVER the other dayand got some clothes to modify and some cheap fabric, so I'm keeping myself busy and making some wicked new clothes for myself.... which is necessary cause right now I am the oddest sort of skinny, flabby and puffy and so many of my clothes do not fit right at ALL! anywhos.... my mom's computer's battery is gonna die any sec I think so.... Laters,
Kalee

Tuesday, August 26, 2008

IDENTITY

Current mood: confused


I spent a lot of time talking to my mama today.... about all the things and thoughts that have been left in the wake of this insane summer.... There is this deeply ingrained aspect of my personality that needs to have things organized within my head... I need to know where things stand... put thoughts and memories in tidy places where they belong.... always have been like that... I need to do it so I can UNDERSTAND WHY.... HOW... WHOO or what.... and one of the things that bothers me most about this illness I am caught by is that there is so much that is UNKNOWN.... I have entire days.... weeks, where I have virtually no memories.... no idea where I was, who I was... even WHAT I was.... I had people coming up to me in the hospital (nurses and such) saying ''I'm so glad to see you looking so much better' that I would have swore I never saw in my life.... I have fuzzy images of things here and there but they seem more like hallucinations and dreams than anything... my mom keeps telling me as much as she knows and can recall, and I hear these scenarios and they seem vaguly familiar, as if they COULD have happened... I can kind of picture them... almost put my finger on it, but its not SOLID.... it is a very unnerving feeling.... I can even remember talking to my mom on the phone, and the last thing she said to me right before I went into a seizure.... it freaks the hell out of me to remember that... being there one minute joking about some random thing.....and the next you are just in darkness..... waking up to random faces speaking languages you don't understand.... confusion, rage.... fear.... on a two week long bad trip that you can't escape or even come close to comprehending...... all in a split second, with no prior indication that it was about to happen..... it terrifies me.... it wakes me at night..... it is a constant thought in the back of my mind that it could happen again at anytime.... Drs have said not to worry, that it wont... but how do they KNOW?

I'm starting to feel like I'm in the midst of an identity crisis or something..... I've spent the better part of the last decade of my life trying to educate myself on nature... on my body... on taking care of myself, and the world around me.... and even though we all KNOW in theory that life is fragile... there are no guarentees, etc, etc.... there is always that part of us that believes we are immortal.... that bad things happen to OTHER people, not us.... somehow I thought that if I was doing everything RIGHT that I would NEVER be one of those unhealthy people.... suffering from some dreaded chronic disease.... hospitalization.... haveing to pop 20 to 30 different pills in a day to keep my body from shutting down.... I didn't take anything lightly.... food, health in general.... living a chemical free as possible existance... researching the crap out of everything and anything.... I rarely make decisions regarding mine or lennon's health without SERIOUSLY looking at ALL options and opinions..... and somehow, for all I tried... for all my efforts, its FAILED ME...... misereably.... I don't understand it... I don't get it... I see so many people around me take everything lightly.... go with the crowd... everyone else is doing it and such.... and their lives NEVER seem to be hit with the turmoil that mine does over and over again.... I DON'T UNDERSTAND.

SO I sit here.... I think about this shit over and over, trying to make some sense.... Did I do something wrong? Where was it, when? Am I rocking the boat too much.... should I stop fighting against the status quo??? PArt of me just feels like throwing my hands up in the air and screaming out to the world I have embraced for so long 'FUCK YOU! FUCK IT ALL! WHO GIVES A SHIT ABOUT CHEMICALS? THE ENVIRONMENT? THE GOVERNMENT?!! We're all going to DIE anyways, one way or another.... and no matter WHAT YOU DO it could happen with the next breath you take...' and another part of me wants to CRY like a little baby and stay sick forever so people will take care of me cause maybe I just can't handle life.... and another part of me wants to say, FUCK BEING SICK! I've been researching this shit for years... I'm going put my money where my mouth has been for years and I am going to find out how the fuck I can HEAL myself of this shit and I am going to get better and pursue that life that I want...... and yet another part of me is scared shitless...... death lurks everywhere now.... it could be on the grapes I just ate.... It could be that SUV speeding up behind us..... It could be a blood test result came in too late and my kidney's fail..... it could be that I try some natural remedy and it makes a bad situation worse.... or I could stay on the drugs and conventional treatments and get worse.... I feel so HELPLESS and out of control in all this.... it is bad to feel so undecided about who, and what to trust... but it is the worst feeling in the world to feel like you can not even trusts your self.... not your memories... your thoughts.... your body.... or your opinions and views on a world you THOUGHT you had some sort of understanding of.....
Yeah... I guess you could say this is a bit of a crisis.... we shall see in time I guess how it all turns out..........................

Thursday, August 21, 2008

PEACE OF MIND

Current mood: calm

Hello friends,
SO I just got back from my first follow up with Dr. Post who is my Nephrologist (kidney doc) and I must say an AWESOME doctor at that.... All good news! He is becoming the only one of all the other Kidney docs I've been seeing that I feel like I can trust and who KNOWS what is going on, and tells it like it is... I asked him today If I can just deal with him from now on (unless of course its an emergency and he is off) and he agreed, so I'm really happy about that. I was dealing with about 6 different doctors this week and all but one were totally and completely unfamiliar with my case and telling me all sorts of conflicting things.... two kept telling me things weren't looking good and giveing me test results that god knows where they got the "bad" numbers.... I feel like I've been in a PANIC of PANICS all week and according to the one Dr. I trust completely with my life it was pretty much all for nothing. The aspect of my illness that could land me back in the hospital with more blood and plasma treatments would be the "blood disorder" half, and according to Dr. Post all of my test numbers are holding steady or improving, so that is looking GOOD. The other half is the "kidney disease" portion and in some ways I doing well there too.... Dr. says right now we are focusing on that portion and just monitoring the blood portion to make sure it stays steady or keeps improving.... On the kidney homefront, I am still retaining fluid like crazy so I am on a VERY sodium restricted diet, and I have to find myself a pool to go in for at least an hour a day (I know it sounds weird but its called "submerssion therapy" and this dr. swears it works even better than the dieuretics I'm on most of the time), He also really wants to do a biopsy but I am still bruising very easily and then they don't go away so he is concerned about the dangers of bleeding still.... Anyways, all in all it was a great visit and gave me the first peace of mind and relief from worrying about ending up backin the hospital that I've had since last thursday when I was discharged..... YAY!

oh yeah, and this Dr. just might be the coolest MD I've ever met, lol... Today he says to me something to the effect of " You are a very unique patient and I respect very much that before all this happened you were a health conscious person, eating organic and healthy food, taking good care of yourself.... Not that ANYONE deserves this but YOU of all people DEFINITLY didn't deserve this"... I thought that was really nice of him to say.... he also said that my case is the strangest case he's ever seen.... out of a disease that is 1 in 100,000 mine has been so unpredictable and weird that it is another 1 out of 100,000 of that original 1 out of 100,000..... so I asked him if he thinks I should go buy a lottery ticket, lol.....

ANyways, in other areas of life things are going pretty good... I'm starting to get over this cold and stomach bug I've had since sunday... Lennon is back to being completely in LOVE with his Mama.... I discovered a couple days ago that I am STILL LACTATING with is totally bizzare and in my opinion a complete MIRACLE.... I am on so many meds right now I don't dare try and actually breastfeed him but I think I may start trying to pump and dump and once I am off the meds I will offer it to him and see if he is interested in another go.... then maybe we can someday have the gentle and loving end to our nursing relationship that I had hoped for.... I am also feeling stronger every day... I can climb stairs without having to pull myself up on the hand rails, and I can get back up from a squatting position which I couldn't do without TWO people pulling me up just a week ago! I can also carry Lennon short distances now too! So..... things are looking positive as of this afternoon.... I'm not getting too excited cause I'm still straddling a very precarious fence and there is still something VERY not right with my kidneys BUT I am staying hopeful and trying to focus on the small victories..... one day at a time I am going to kick this thing's ASS. Thank you all for all your thoughts and prayers, they are working wonders so far! I haven't really been up for visitors all this week with my cold and stomach issues on top of just the general effects of the HUS/TTP.... we shall see what next week brings, I will be sure and keep you all updated on here.... I LOVE YOU ALL!
Kalee and Lennon

Currently watching:
Monsters, Inc. (Widescreen) (2 Discs)
Release date: 2002-09-17

Wednesday, August 20, 2008

This black cloud

Current mood: tested

I feel sick to my sstomach right now.... and am fighting off a full on panic attack, awaiting blood results my Dr. ordered "STAT" today.... they should be back already and haven't heard anything yet.... depending upon what they see Dr. said I may end up back in hospital tonight..... I'm so sick of this dark cloud looming overhead... every other day they tell me it might rain, and I never know if its really going to, or if its gonna pass over again.... I keep having to look at Lennon as if it is the last time I may see him for awhile.... and every night I sleep in my bed I wonder if I will be so lucky the next night... I'm sick of being sick... I just want someone to tell me that this will all come to an end at some point and I will be okay.... I just want someone to be able to tell be that I will live to see my baby grow up... but I will just keep hoping and praying and fighting cause thats all I can do I guess....

Currently watching:
Pixar Short Films Collection, Vol. 1
Release date: 2007-11-06

Tuesday, August 19, 2008

FUCK.

Current mood: anxious


Saw Dr. today and got some blood tests... waiting to hear back today or tommorrow but Dr. said I might have to be readmitted................................... here I am praying and crossing my fingers....

Monday, August 18, 2008

FUTURE...

Current mood:HONEST
Category: Life
This is what I see.... have realized from this experience I have recently lived through to tell......

THIS is what I want...

A little old farm house.... not too tiny but comfortably cozy, maybe a little shabby and saggy, but well loved and taken care of.... with walls of our own that I can take as much paint and brushes to as my heart needs.... with a big ole overgrown jungly garden leading to the front door... flowers, and big leafy bushy plants and flowery leafy trees and shrubbery....

I want Lennon and perhaps a lil more young'uns to run in a big big space of land... trees to climb, fruits and veggies to pic.... I want to school them as best we can in the ways of the world, or nature, and of life.... as partners... equals.... friends....

I want a BIG BIG garden... fruits and veggies galor.... more than enough to eat, share...maybe even sell.....

I want to spend several months of the year just traveling around in an earthlovin vehicle, selling my parents (and at that point OURs too) Jewelry at fairs and fests around the country.... maybe further.

I want to go to nursing school and in off months nurse on my own terms, my own hours, part time....

I want my partner to do whatever his heart desires to do in off months to keep bringing in enough to help us live as well.... but also to feel free enough to enjoy life and all his passions... cause I'll be doing the same....

I want to play my music, write my thoughts, paint my mind on anything and everything... make things from trash... learn all sorts of things... dance, sing, and smile as often as possible.

I want to stay in new england.... likely CT, possibly RI, VT, or MA.... but still close enough that my family is NO MORE than an hour away TOPS......



I've realized a few other things... I'm not as "close" to some of my family as I'd like... but I LOVE them more than anything, and I KNOW that they feel the same.... and the few intimate conversations that I HAVE HAD with each and eevery one of them at one point of another in the recent year or two leads me to believe that the potential for great friendships.. REAL FRIENDSHIPS are there.... and I'm not will to give up on that.... just as they were not willing to give up on me during recent events.....

Thus, why I will be staying close by wherever they all may be congregated.... its not my zip code that matters in the slightest.... and I may live in the heart of a beast of a state in the epicenter of what is rapidly becoming a beast of a country... but 90% of the people Lennon and I love in this world and vice versa are here.... and so will I be.

I have realized that I can KNOW and keep up to date on what is happening in this world around me.... and I can CHOOSE every day of my life to NOT participate as MUCH as possible, but that paranoia and a complete refusal to LIVE lest you somehow support an evil system you don't agree with is futile... it accomplishes nothing more than putting one in a constant state of FEAR and produces an inability to live any sort of meaningful existance.... YES the system SUCKS... yes it is run by terrible evil people.... yes corporations suck.... and politicians don't give a shit about any of us..... yes the world may end tommorrow... the government may start busting down doors and hauling off the trouble makersor "terrorists".... and yes they are trying to make slaves of us ALL...... and I can CHOOSE to think what I want and do what I want about that... I choose to find some niches where I can still BUILD a future for my family and I.... be prepared mentally and physically for any shit that may go down... live as close to nature as I can without becoming Grizzly Adam's wife... refuse to shop at big businesses as much as possible... and all the other numerous things that are within MY ABILITY to do to existiin this fucked up world without losing my sanity... There's this cheesy ass country song I heard once and the chorus has been stuck in my head since the night before I suffered a massive seizure that almost claimed my life... I have no idea what any of the rest of the words are but the chorus goes like this:

You CAN spend your whole life buildin'
Something from nothin
One storm can come and blow it all away
BUILD IT ANYWAYS

thats what I intend to do with my second chance I have been given....

I have realized that my purpose in life was NEVER to be a corporate "yes man"... a coffee slinger... a telephone answerer or any other MEANINGLESS existance.... and on the same token I do not believe it is to be anyone who's name will ever be mentioned in ANY history book... not a famous world shaking anything.... I am not a gandhi, a john lennon, or an MLK..... but I will CHANGE the world through small acts of kindness and compassion.... because someone has to, and because the small things are going to be what changes the world... not a glorified leader.... the little people who do little things every day, like let someone out into traffic, or tell a scared sick person with demetia for the 20th time with love and patience in their voice where there are, or wipe someone elses ass because they can't do it for themselves.... or spend their days nursing sick children even though half of them won't survive and the pain of that loss will have to be felt over and over by said nurse...someone has to do these things... these are the acts in life that have MEANING.... that will make the world just a little better place for our babies to grow in....

The last thing I've realized... there is someone I LOVE with all my heart that is not near me.... he knows who he is. someone I have felt this unexplainable bond with since we were kids... someone I have always pictured as a piece of my soul and vice versa.... someone who once said the most amazing thing I had or have ever heard in my life... "I want to climb inside you so you'll never be lonely" (you already ARE...) ... And I want something from this person that I know could be considered so selfish.... I know that there are factors already concieved in other worlds that have come into play.... and I know what I ask... and the compromises which would need to be made.... and I wish I could be the one to make a great sacrifce... but I've tried planning it so many times and I CAN'T... for reasons stated... and I remember when you asked me what I thought you should do 2 years ago...and I said nothing though I wanted to SCREAM for you to STAY... just stay here... that you could be mate and daddy right here.... not step... daddy. I remember a campfire and a walk when I wished it was you I was sitting besides.... I remember crying so many nights when I have wished it was you sleeping besides me and I remember all the times we tried and the timing was never right... and I try not to live in the past... and I've tried moving on to others... many times.... but its ALWAYS been YOU.

and so I ask of you the one last thing I want out of this life... with every trial and trouble and sacrifice that may come of it... I ask for one last chance.... another TRY at standing besides you as the other half to "OUR"... as mates, friends, and partners with all the honesty, OPENNESS, faith hope, love, integrity, equality, RESPECT, and strength that comes from having a REAL TRUE human relationship, the kind you an I have had for years with each other, and never with another... and if this cannot or will not be the case I ask for nothing more than such an answer... and I will ask my heart to let me move on from this constant ache for you that I carry with me everyday....

this is what I want. What do you want?


Currently reading:
The Poisonwood Bible
By Barbara Kingsolver

Sunday, August 17, 2008

Pictures, Life, and nightmares

Current mood: drained
Category: Life


howdy,

lots and lots of new pictures up... some of friends and family but mostly from the hospital and some things I've made recently as well.... A few of the hospitaal ones may not be appropriate for those with weak stomachs, YOU HAVE BEEN WARNED...

Anywho, things being home are going alright.... Lennon is warming back up to me and is doing good.... I am weaning myself off of the 4 anti-depressent anti anxiety type medications they have had me on THIS WEEK with is tough but in my mind is necessary to retain a very necesarry piece of myself....
I have lots of drs apptments and blood tests this week and next.... might have to get a kidney biopsy next week as well.... I'm starting to look into pursuing some sort of legal action against the farm and possibly whole foods.... I never thought I'd be a person to sue, but this whole thing has taken so much from my family and I that I can NEVER recover..... and has left so many scars inside and out that will never disappear..... My family at the very least deserves to be compensated in some small way (trust me NO amount of money will make up for this hell we've all been and are still going through but....)

Besides all that I've just been spending time with Lennon, on the computer researching this disease, and trying to sort through the massive and confusing mix of feelings, loss, images, memories, thoughts, nightmares, and everything else connected to this disaster that has become my life.... and trying not to let it break me down into a cowering child.... In the hospital I was having all sorts of bizarre nightmare/hallucinations of crazy shit like all of the muscles and skin shredding off my bones, and I couldn't top ripping and tearing it off, and it wouldn't stop until I'd call out for my dad or a nurse or someone..... it was all so reall and vivid.... I'm kind of freaked out that once I go off these anti-crazy pills they've got me on it might start again but I hate feeling drugged and sedated..... I'm not a "give me a pill" person.... I'm a "let me work through this shit in my head myself and on paper" kind of person so...... we'll see how this all goes i guess......
Thats all for now, going to visit my grandparents today for a delicious "welcome home" lunch/dinner... should be a nice time to be had.... I am thinking of a few of you all my friends... would love to hear from/see you... you know who you are... much Love...

until another moment,
Kalee


Currently listening:
Mad World Pt.1
By Michael (Ft Gary Jules) Andrews
Release date: 2003-12-09

Friday, August 15, 2008

another update / new room

Current mood: blissful


NEW ROOM: MY OWN!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! phone number 860267****, visitors and callers are welcome virtually anytime ( especially ones from washington and boston ....) if visiting please just call to confirm I am in my room ;)

I'm home... just got here couple hours ago, showered the stink of hospital off me, ate some chinese food and have been hanging out with my beautiful Lennon the whole time. Its amazing and scary to be home... dr's aren't sure I'm totally out of the woods yet and there are still quite a few things on the kidney and blood homefronts that are not at all close to normal.... but they felt comfortable sending me home so long as I follow up closely and very often with tests and my medical team.... So anyways.... can;t wait to spend the night in my own bed with my little cuddle monster.... I had to open the windows to smell the fresh east hampton air, I was so excited to see brooks pharmacy and donut depot and even Mcdonalds..... I wanted to kiss my kitchen floor when I walked in the door. Most of all I CRIED my eyes out nearly the entire way home from the happiness and mix of emotions... THere was such a long time when I thought this day would never come and it came so close to being the truth, and now suddenly here I am, Alive and sitting on my couch with my angel sleeping across my lap........ I feel so lucky and so blessed to have life.... thank you so MUCH my friends for listening and for all your thoughts and prayers for me and my family this past month and a half.... it made a big difference and I LOVE YOU ALL TREMENDEOUSLY. I will write more later, Good night, BE WELL ALL, God Bless and Take care of yourselves
Kalee (and LENNON!!!!!!!!!)

Thursday, August 7, 2008

More update.... depressed....

Current mood: crappy
Category: Life


So Dr said today I likely won't be going home this weekend... More likely NEXT week..... :( This makes me very sad....... I miss my Lennon so much... I miss my life... the rest of my family... My poor dad is getting burnt out from being down here practically 24 hours a day, I can tell.... and my momma and Addi are both sick and having to take care of Lennon.... I'm trying so hard not to get down in the dumps but this just doesn't seem to end... I am trying so much to count my blessings and be happy that I am alive (the dr just reiterated again that I would have not likely made it through this if I had waited ONE more day even to come in....... so my fleeting desire to go to the Clinc for some medicine for sure SAVED My life....) And I know I need to be so thankful that this could have had a completely different outcome.... not to mention all of the valuable lessons that this has taught me.... I'm trying to be thankful to God that I will get to be here to watch my baby grow up.... but this is all starting to wear on me emotionally in addition to physically getting tired of feeling like hell.... I JUST WANT TO GO HOME TO MY BABY......!!!!!!!!!!!!!!!!!!!!!!!!! Sorry for this burst of "woe is me"..... I hate being one of those weak sorry asses.... but I just need to get this out!! I was enjoying my life so much this summer.... Lennon and I were out riding our bike just about every day... feeding the ducks, going on slides, having such a great summer together.... I just started working on a mural at a local youth theatre group... I was getting in such good shape physically.... you should see me now... I look like I got hit by a couple of tow trucks (literally.... you should see some of this bruising) and I feel worse than I look! My poor little boy got weaned out of nowhere.... not to mention that his mommy just up and disappeared one night out of the blue and hasn't returned in a month still..... My family got the daylights scared out of them , watching me go through seizures and not sure if I was ever going to open my eyes again... I lost A FUCKING WEEK of my memory.... nothing but flashes of pain and faces.... I've had TWO Arterial catheters installed in my body, one of which will now be there for AT LEAST a month or two... I've had MRI's, LUMBRA PUNCTUREs, PIC LINES, PLASMAPHERSIS DIALYSIS, IVS, more BLOOD TRANSFUSIONS than I can count....., GOD knows how many different kinds of DRUGS and STEROIDS...... And it WILL NOT END!!!!!!!!!!
I am greatful for how lucky I am.... but I cant help but feel so very ANGRY that this happened....

I'm so not a lawsuit kind of person.... my mom thinks that once I am out of here and recovering, I should Get a lawyer and pursue that Dairy for neglegence (all signs point to that being the case...and besides me 4 others fell ill too , all kids between 7and 2 years old!) I have mixed feelings on that.... but I am so freaking MAD that I almost died and my family and I've had to go through all this hell just cause someone didn't take seriously what they were doing.... aaaarggggggggghhhh.....
I dunno.... I guess I'll figure it all out once I'm on the road to recovery more.....

physical updatewise, they still haven't figured out the belly bleeding thing but they are monitoring it... and now the past two time I have gotten my plasma treatments I have spent the entire night after in excruciating pain with these weird charley horse insense shock/ muscle spasm things in my legs from groin to toes.... They figured out its some sort of electrolyte/calcium imbalance that is being caused by the treatment and they said they can give me something to get rid of it next time.... I hope so because lastnight they gave me me the strongest painkiller they had (I wanna say Demeral?) (mainlined into an IV) and it didn't even barely take the edge off, just made the room spin all night as well... Besides that they are puzzled why I am loosing so much protein in my urine.... Apparently a sick person will sometimes lose a couple hundred protein counts.... someone with kidneys in trouble will lose 4000 or so.... I MEANWHILE am loosing I think they said around 40000protien count consistently.... and they have no idea why, cause its not a typical symptom of this illness.... so Hopefully my kidney's will stop being little jerks (lol) this week/weekend...... otherwise they are talking about biopsy's and extra steroids starting this upcoming week...... Fun stuff......

Anyways.... I guess thats enough pity party blogging out of me... Sorry for being dramatic..........I just miss you all ( especially my LENNON) and am getting real tired of having to put on a tough face and lookon the BRIGHT SIDE OF LIFE..... I feel shitty, and it needed to be said at the moment..... Love you all.

well, I guess I can say something on a lighter note.... today the "art therapy" volunteer came in and let me use her oil pastels and watercolors for a couple hours.... so I got to paint/draw a picture of my beautiful little boy..... that was pretty cool and a nice release that was much needed..... Its pretty cool that they have things like that for patients.... so yeah... happy happy joy :) I wish I had a camera... I'd put up a picture of my painting... but I no have one so..... oh well... Laters

Currently listening:
Meaning Of Life
By Monty Python
Release date: 2003-09-22

SONG....

Current mood: catalyzed
Category: Music


This song has been stuck in my head all the past TWO weeks.... not sure why but thought I'd repost it......


Music & lyrics: john popper

It doesnt matter what I say
So long as I sing with inflection
That makes you feel that Ill convey
Some inner truth of vast reflection
But Ive said nothing so far
And I can keep it up for as long as it takes
And it dont matter who you are
If Im doing my job then its your resolve that breaks

Because the hook brings you back
I aint tellin you no lie
The hook brings you back
On that you can rely

There is something amiss
I am being insincere
In fact I dont mean any of this
Still my confession draws you near
To confuse the issue I refer
To familiar heroes from long ago
No matter how much peter loved her
What made the pan refuse to grow

Was that the hook brings you back
I aint tellin you no lie
The hook brings you back
On that you can rely

Suck it in suck it in suck it in
If youre rin tin tin or anne boleyn
Make a desperate move or else youll win
And then begin
To see
What youre doing to me this mtv is not for free
Its so pc its killing me
So desperately I sing to thee
Of love
Sure but also rage and hate and pain and fear of self
And I cant keep these feelings on the shelf
Ive tried well no in fact I lied
Could be financial suicide but Ive got too much pride inside
To hide or slide
Ill do as Ill decide and let it ride until Ive died
And only then shall I abide this tide
Of catchy little tunes
Of hip three minute ditties
I wanna bust all your balloons
I wanna burn all of your cities
To the ground Ive found
I will not mess around
Unless I play then hey
I will go on all day hear what I say
I have a prayer to pray
Thats really all this was
And when Im feeling stuck and need a buck
I dont rely on luck because...

The hook brings you back
I aint tellin you no lie
The hook...
On that you can rely



yeah.......... i HAD WON TICKETS to a concert tonight for collective soul, blues traveler and LIVE.... I would have loved to have gone , but didn't work out.... at least my brother Andrew and little sister Addi were able to go in my place, HAPPY BIRTHDAY ANDREW!!!!!!!!!!!!!


Currently listening:
Four
By Blues Traveler
Release date: 1994-09-16

Wednesday, August 6, 2008

another update from hospital...

Current mood: distractable
Category: Life


Another quick update from the hospital.... things seem to be still progressing possitively... I have some sort of internal bleed thing that is going on in my belly but they think its probably harmless and as a result of the 50 pounds or so of water weight that I'm carrying as a result of low kidney function. Besides that, all my blood counts are improving... the diseased cells are decreasing and with my treatment everything else seems to be steadily improving.... Heres some info for anyone who is curious what exactly I have going on.....

it is called HUS/TTP and usually it is something that would be found in childhood, and is some pretty rare wierd shit...theirs lots of conflicting info because it apparently is something so rarely seem that they haven't quite figured out what it is or does or why really..... here's some of what I've been able to dig up...


Hemolytic-uremic syndrome (HUS) and thrombotic thrombocytopenic purpura (TTP) are microangiopathic disorders—that is, they are characterized by abnormalities (chiefly blood clots) that occur within the small blood vessels of the body. Both HUS and TTP are distinguished by blood clots within the capillaries and arterioles of many organs... -->more--> Such clotting is associated with hemolytic anemia (low red blood cell count due to cell rupture) and low numbers of platelets (cell-like bodies responsible for blood coagulation).

Hemolytic anemia results from the fragmentation of the red blood cells when they pass through areas of thrombi (masses or clots) or turbulence in the circulation. Such forces shear the cells in half, producing cell remnants that appear as helmets and other odd shapes when viewed under a microscope. In fact, the diagnosis of HUS-TTP is aided by microscopic examination of the blood for sheared red blood cells.

Causes and Risk Factors

Although the exact cause(s) of HUS and TTP are unknown, experts believe that an abnormal, inflammatory reaction within the blood stimulates the deposition of platelet-rich thrombi. It has been observed that a circulating and/or missing factor in the blood perpetuates the process. Therefore, HUS/TTP patients often benefit from treatment that removes the plasma (fluid, non-cellular part of the blood) and replaces it with donor plasma.

Many diseases and conditions have been found to spur the development of HUS and TTP, including:

* Enterohemorrhagic Escherichia coli (EHEC) infection. EHEC is a diarrhea-producing bacterium that has been associated with epidemic outbreaks of HUS in children. This particular bacterium (OH157:H7) has been identified in undercooked meat as well as other foods.
* Pneumococcal pneumonia infection
* AIDS (acquired immunodeficiency syndrome)
* Drugs, for example, oral contraceptives, chemotherapeutic medications (mitomycin C, bleomycin, cisplatinum), immunosuppressive agents used during organ transplantation (cyclosporin, tacrolimus), stroke-preventing drugs (ticlopidine hydrochloride), quinine
* Antiphospholipid antibody syndrome
* Pregnancy and the postpartum period

Signs and Symptoms

The general symptoms associated of HUS-TTP are quite variable. Purpura (bleeding into the tissues) sometimes can be seen in the skin, and patients often complain of tiredness due to anemia. Some individuals with TTP may have neurological symptoms and fever.

Children who develop hemorrhagic colitis (colon inflammation and bleeding) due to E.coli may become infected as an isolated incident or as part of a large outbreak (e.g., identifiable exposure to food such as undercooked meat). Bloody diarrhea often occurs 3 to 4 days after exposure, with abdominal pain but usually no fever.

Diagnosis

HUS and TTP usually are diagnosed by the combination of low platelets and anemia caused by hemolysis. Other findings may include fever, renal failure, and neurologic abnormalities.

Treatment

It is essential to treat HUS and TTP, as the mortality rate without treatment is close to 90%.

Treatment involves:

* Plasma exchange with fresh plasma—Plasma should be replaced on a daily basis until the platelet count normalizes—typically after 5 to 15 treatments.
* Plasma exchange with cryosupernatant of plasma—Individuals who are resistant to plasmapheresis (plasma removal and transfusion) with fresh plasma may need this more intense, twice daily regimen with plasma cryosupernatant (plasma derivative).
* Additional medication with vincristine and intravenous gammaglobulins

Relapses are not that uncommon in people who have had HUS or TTP. Such cases may require another course of treatment. One study reported a relapse risk of 36% over a 10-year period. Therefore, patients need to be followed-up indefinitely.

Children with ECHC associated HUS tend to have a self-limited disease and only require supportive care, unless there is severe or persistent disease. Prolonged follow-up in these patients is usually not necessary. Unfortunately, adults with ECHC associated HUS often require full treatment similar to that required by patients who have HUS-TTP unrelated to ECHC.

more info....

http://www.nlm.nih.gov/medlineplus/ency/article/000510.htm


HUS/TTP


http://www.emedicine.com/EMERG/topic238.htm
Yeah... the odds of getting this crap is like worse thatn being struck by lighting.... or winning the powerball, lol... Figures right! ;) but the odds of surviving... as you can see, not so hot either, so I'm going to have to count this as Luck and add it to my blessings I think....

I was able to borrow my mama's laptop for the night, so I'll probably be on here for a bit tooling around... I'm actually hooked up to this machine right nw that does my treatment with half of my blood out of me as I type..... very very strange shit... Anywho....... I hope everyone is doing well... I'm going to go try to find something to distract myself from the odd sensation that this creates... Please feel free to send fun comments and such if you are on tonight! LOVE YOU ALL!!

Saturday, August 2, 2008

My update from the hospital - From Kalee

Current mood: blessed
Category: Life


Hello everyone, It is actually me Kalee this time. I am still hospital bound but feeling a little better everyday. Its been a very very hard painful and terrifying road the past month, but believe it or not , one I would not change a thing about. I have had so much time to do some serious soul searching that I feel like I have morphed into a brand new person... I guess staring death in his big ole bloodshot eyes will do that to a person..... The roughest past of this has been being away from Lennon..... its been around a month since I've really been with him...Which sadly (and obviously among other things) means he was involuntarily weaned... and today he came to visit for the first time and cried and wanted nothing to do with me... I guess it's to be expected based on the circumstances....

Meanwhile the rest of my bonds with my family have grown and strengthed in ways I never could have concieved.......I have a very limited batterey life to be writing here so I can't really go into details of my sickness, but suffice to say that its one of those diseases that there is not textbook on and its a 50 50 crapshoot..shot at making it through..... some of my treatment involves removing all of my blood and plasma and replacing it with donor plasma, to keep my kidneys from shutting down.... sort of like dialysis.... DOn't want to scare you all too much, and so far it is working so its a good thing!! my battery is low, but I just wanted to touch base with everyone and let you all know I'm still alive and kicking.... not planning on leaving you all anytime soon! I've realized how much more living I NEED to do and I'm fighting this monster with all I got in me. on some positive notes, I have met some absolutely amazing people during all of this. One or two that I could concieve of being lifelong friends with,and others that I'll probably never see again but who have changed me forever for the better. I have seen love and compassion in this place that I've had never concieved existed.... Which is why............... I have decided that my calling in life is to become a NURSE. As soon as I am back on my feet I have decided to attend nursing school! It goes much deeper that I can explain here, but the things I have seen and people I have met have inspired me so much and the more I think about it it and meditate on it the more sense it makes for my life and who I need to be to be fulfilled. I plan on incorporating my love of all things hippie and natural of course, but I have learned so much about the very necessary place of western medicine and how the two could be used in conjunction to save so many lifes and give care and comfort..... Anyways I ramble as usual (some things will never change ;)) I have a few other things I need to do before my battery dies...... I just want to finish up by telling you all I loved you so much and am so very greateful to know you all and to be so lucky to be abe to be here to tell you all this... Please don't take life for granted... take it from me that it is the most precious and fragile thing..... Make the most of it, I intend to from here on out.... The hope is that i'll be out of here is the next week or two.... In the meantime I would love and welcome any visitors and company... I'm a little puffy and mishapen but II'm feeling more life myself each day! I'm at hartford hospital and have been moving rooms quite a bit but If you ask for mmy info at the desk you should be able to track me down. Currently I am in Bliss 1126-2 and my direct linw is 8605450673. I look forward to hearing from some of you all! These four walls are getting a little old! ;))) Love and Peace my friends!


Currently reading:
Running With Scissors
By Augusten Burroughs