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..........................

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

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!!!!!!!!!)

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

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!!

from kalee’s mom

Hello everyone
I wanted to let you all know that, Kalee is very sick.
She has been in Hartford Hospital for 15 days.
She got E-coli from raw milk, at least
thats what it looks like happened. You might have heard it
on the news or read it in the newspaper, about
an organic farm in Simsbury, CT getting closed down (Town Farm Dairy) . 3 other people in the state are sick with e-coli. The only common link is they drank milk from that dairy. I hacked into her myspace to tell you, and to ask everyone to pray and send good wishes her way. She really is not up for any company right now. I will let you know when she is . But she really could use some PRAYER, LOVE, and HOPE from all of you.
Kalee's mom - Karen

food poisoning and the week from hell....

Current mood: sick
Category: Life


Lennon and I have just had the week from hell... hopefully it is drawing to a close now! Don't have too much time to write, just wanted to give a quick update though... On Monday Lennon and I were in a bicycle accident which, despite my best efforts to prevent the bike from going over, resulted in Lennon's little head (helmeted thankfully) violently striking the sidewalk cement, Lennon's knee being skinned, and him being pretty shook up. His Helmet was cracked, and he was shaking and crying hysterically after the crash and so I called 911 and we were treated to a trip to the ER for a more thorough lookover... Turned out he was fine and had no signs of any serious head injuries or anything... I skinned a knee and sprained my ankle, pulled muscles and just generally felt like I had been in a bad carwreck the next day or two (though Lennon was back to his old cheery happy golucky self within 24 hours... little kids are AMAZINGLY reslilient I guess!

So one would think this was enough trauma for the week, but starting that very night (monday) I started having some serious nausea waves, which I chalked up to upset nerves from said bikeing incident.... Tuesday they were a little worse, but still far from terrible. by wednesday they had gotten bad enough to be a nuisance (but still not bad enough to make me see that eating normally might not be the best oof ideas...) until I decided to stop for a grinder and a scoop of ice cream with Lennon... about an hour or so after that I suddenly was beset by horrible (HORRIBLE) stomach cramping and the lovely diarrhea that came along with them... This progressed throughout the night and by morning it had gotten to the unbearable point.... to put it bluntly and possibly TMI but, I would compare it to being in labor with child.... only in the stomach and ass regions.... hospital gave me drugs to take the edge off the pain, CT scan to make sure it wasn't some unknown internal trauma caused by the bike accident earlier in the week. And gave me some super strong antibiotic junk cause my mom mentioned that my grandfather had been ill for 8 previous months with this super intestinal bug, C-Diff. I left the hospital not knowing any more than I had going in, but felt quite bit better (from the drugs)... that lasted for mere hours before the drugs wore off and for the next 48 hours the majority of my life was spent praying for either the pain to stop or for lightning to strike me dead and put me out of my misery. Thankfully my mom and Addi were able to watch Lennon for much of that (including through that first night) which was help in one huge way, but in another a whole other arena of TORTURE for him and I.... Plus he has hardly nursed this whole time because of the drugs I am taking. I put off starting the antibiotics for two days (since I was hoping to wait it out and let it resolve itself) until I could no longer take the pain and in a moment of desperation I started taking them....

It's over 2 days later and Now I am starting to feel slightly better.... well enough to eat a bit of white rice yesterday, and some banana and oatmeal today.... I've lost almost 10 pounds this week, and feel so WEAK! but hopefully things are looking up.... I still have almost 4 days of antibiotics to take and I'm not even entirely sure that they did a damn thing to begin with.... and I can't nurse Lennon until they are done with.... poor kid does NOT understand at all why he can't nurse, and has been (as is to be expected) putting up quite a fight about it.... I tried giving him a bottle of goats milk to substitute for this week, but he wasn't having it.... I am really hoping that this all works out... that I don't end up with some other crazy sickness from these damned antibiotics.... and that Lennon doesn't end up weaned in such an unfortunate way... This is SO FAR from the happy and healthy way that I want our nursing relationship to end someday.... Anywho.... thats all my news for now... oh yeah, on the lighter side of things, I was finally able to sell my car in the midst of the horrible week, and for only a little less than I paid for it a year ago, so now I've got enough money to buy a more Kalee-friendly car :) .......yeah........um... hope all is well for you my friends! Thats all folks!


Currently reading:
Zen and the Art of Motorcycle Maintenance
By Robert Pirsig
Release date: 1984-03-01