Take Apart Heart

2012-01-29T00:15:00.003-06:00

Um...I feel more alone than I ever have in my entire life. People say that all the time, I know. But I fucking mean it. i am so very alone right now.
I have no clue where to go from here.
I don't know what to do. I don't know who I am, I don't know what I want.
I am alone, and I don't know anything.
What now?

A complaint of epic proportions. You don't actually have to read it, it's more of a GODIHAVETOGETTHISOUTOFMEORIWILLEXPLODE type of post.

2012-01-26T23:34:00.003-06:00

I feel like screaming, like pulling my hair out and screaming until I can't fucking breath anymore. I feel like I'm suffocating, choking on introspection. Suffocating on all the thoughts in my mind, all my self analysis like a million blankets thrown in my face obscuring me from the right path, the simple path.
I'm so tired. I'm so exhausted. This is a toxic relationship.
I'm done letting him use my "health problems" as a weapon.
"I think about your health" is his go-to excuse/reason/tool/get out of jail free card for everything!
1.) I need you to communicate with me more..."I think about your health, don't want to add more to what you have to deal with"
2.) Can we have sex? "I think about your health, you didn't feel well last week I don't think you're ready to have sex yet."
3.) Can we discuss ______?/_____ is really bothering me lately./Can you please_____ more often/etc.. "My doctor told me I need to avoid stress because it makes my back problems worse, and since I'm already thinking about and dealing with your health stuff all the time, when you ask me for _______ it just adds unnecessary stress."

He also says things to discount and make light of my issues. Like "you just need to stop unnecessarily stressing me out by letting every little thing bother you". In that sentence he has not only made it seem like my problem wasn't a problem but an "overreaction", he is insinuating that even if I do have an issue it must not actually be that important, is "unnecessary" and that I better think twice or else I'll stress him out. Which he knows I worry about not only because he has said that stress hurts his back, but because I am obsessed with not realizing that I'm being manipulative and so I always second guess my motivations and the legitimacy of the issues I'm having in a relationship. He knows this and plays on this weakness.

He says I need to stop "harassing" him when I come to him with a problem. His reactions make me feel like a simple nagging wife archetype who just doesn't know when to shut up. A woman who should base all of her interaction with her significant other on whether or not he wants to have them. To put what she wants/needs/desires on the back burner to his happiness. He shouldn't have to deal with my issues when he'd much rather watch TV. "Goddammit, why can't I ever just relax in peace!" he's screamed at me before.

After the transplant everyone kept saying "he's a keeper" to me. "he's a keeper" hes a keeper, hesakeeper hesakeeper. I agreed, the man he magically became during that terrible/amazing time in my life was a keeper. But it was momentary and temporary. Three weeks later I was living in his house and while he assured me that everything was going to go smoothly, he got frustrated and lost his temper quickly. We argued and I had so many panic attacks I had to go on anti anxiety medicine for the first time in my life. I will agree that it by far wasn't all his fault, I had some pretty crazy fucking mood swings, depression, and drag-you-down-in-the-darkness breakdowns but his reactions ranged from mediocre to fucking pathetic.

Intimacy is nearly non-existent with Ryan. The most intimate we have EVER been was while I was in the hospital during the transplant. Ryan kept eye contact with me several times, held my hand, comforted me, and vocalized compliments and his love and adoration numerous times. Other than that, we hardly have any bodily contact at all. Sometimes if he's getting coffee or sitting in a chair, I'll come up to him and offer a hug/kiss/or back rub. Occasionally while we're at pool he might come up to where I'm sitting and offer his back to me almost like "here, I'm standing close enough for you to touch me, revel in this allowance". Or he might even touch my shoulder on his way past me. When we are at his house, watching television, I have to ask him to touch me. "will you put your hand on my knee?" while I take every opportunity to rub his feet as we watch a movie, or to rest my head on his lap if he's not laying down and I am. If I say something about this he gets angry and says "what do you want!? I'm 8 inches from you!" Not recognizing that general vicinity is a much different thing than physical contact. Sex. Sex is mediocre at best. Sometimes penetration is wonderful. But other than that, it actually sucks really really bad. I never get off unless I masturbate while we're fucking. We only have sex in one position. He doesn't ever make any noise or say anything sexy, he leaves his clothes on every single time! In three years, we have had completely naked sex enough times to count on one hand! He keeps his eyes closed the entire time, sometimes he even leaves his sunglasses on. That's because usually we were watching tv right before getting busy. Usually the TV is still on, and I have to listen to some stupid fucking infomercial while I'm trying to have sex. He never goes down on me, he has done this maybe twice, EVER. I tell him what I want: roleplay, being tied up, spanking, my fantasies, whatever it might be. He says he's not interested in having sex like that. I ask him what he wants, he says "nothing". I buy cards to try to spice it up, cards with sex positions on them, and he barely looks at them, tossing each one aside saying "done that. done that. not interested. done that." A couple of different times he's even cum inside me and then gotten up to do whatever, and when I say "I didn't come" he said "feel free to use your lube, then". He doesn't stay to watch or touch my breasts or legs, he leaves. We don't kiss during sex, we don't kiss ever. Sometimes he kisses me on the forehead, and sometimes the lips, but not very often, and never with tongue. After sex, we don't cuddle, snuggle, have pillow talk or really do anything except watch tv and fall asleep. It isn't spontaneous and often times he turns me down when I try to be sexy, and makes me feel stupid. When we have sex it's usually at his advances which usually consist of us laying in bed watching tv, his face is still glued to the television but his hand is under the covers blindly searching for my clit. Sometimes he finds it, and vigorously rubs it dry until its numb, but more often than not he finds a spot that feels vaguely similar and rubs it the same way. Then I go down on him and we have sex. In that order, always. He never looks at me naked, never watches my pussy as he touches it, and never pays attention to what we are doing in general.
I don't feel sexy, desirable, like I turn him on, or even pretty around him. This is because I barely ever receive any kind of compliments from him. Nary a "you smell nice" or "wow your hair looks beautiful tonight". Nothing. Nada. I bring it up to him and he says "I only give compliments when I mean them, what do you want me to do, lie to you?"

Dates are almost non-existent. When I try to go out to eat he says "I'm not gonna waste money on food I can cook at home!"
movie: I'm not gonna waste money when I can rent it later!
comedy club: Not interested.
haunted house: " "
mini golf: " "
Play: " "
Nothing. Nothing. Nothing. Nothing. Nothing. Boring, boring boring. Dull. Unfair.

I ask him, while he's in India for almost two months, "do you miss me?" and he says "yeah, why?" and then changes the subject.
There is some pretty serious and bummerific stuff going on with his health, and I'm trying to be there for him, but he's keeping me completely in the dark. Again because "...your health issues, I don't want to talk about my stuff when yours is so much worse". He talks more to our mutual friend, Melvin, than he does to me.
Ryan gets home on the 6th of Feb. Melvin leaves for 3 weeks on the 8th. Melvin told me tonight that Ryan has already made plans with him to "get together" before Melvin leaves. This will have to happen on the 7th, obviously. This makes me angry and hurt, because after not having seen me for 2 months, my boyfriend of 3 years wants to hang out with his buddy Melvin instead of spending time with me. This makes me feel like shit. I am one of his lowest priorities. I barely even matter at all to him. He doesn't talk to me, he doesn't need my opinion to weigh in on making major decisions. Sometimes I think the only reason he's with me is because I'm better than being with no one and he thinks I could die suddenly and doesn't want to feel guilty for breaking up with me. That is a shitty shitty way to feel.

Tonight on the phone I sexily implied that we have phone sex tonight. Even though he's been really sick the last few days he tells me "Maybe I'll call you, but I'll probably go out with my friends tonight". When I mention that he should be careful because his body probably isn't completely healed from the flu, he gets annoyed. Then I get mad because he didn't even act like phone sex was interesting in any way. I said "well, does that even interest you, at all!? He said "No, not really" and then said "of course it does, what do you think!?" I said "I think you make me feel like the most unattractive woman in the world. Then I had a mini panic attack and he said he had to get off the phone. Wonderful.

I need this to be over. I need our relationship to end.
But I feel guilty after Ryan "put up with" all my health issues and helped me through that time in my life. I can't break it off now, while he actually needs me for once. But does he need me? Or do I just need him to need me?
He sure doesn't act like he needs me for anything. On the contrary, he acts like he doesn't need me for anything. Like I don't even matter.

I don't need this shit, that's for sure. I'm so tired of feeling bad. Bad for things I cannot even control, like my health and my wants and needs. I'm tired of second guessing myself. "Do I really need that?" "Is that really worth arguing about?" "Am I being unreasonable?" etc etc etc etc etc etc blah blah blah blah blah.

I need and want and deserve a partner who cares about my feelings, and wants to hear them. A partner who finds me attractive and tells me so. Who appreciates my help and support. Who needs and wants me as much as I need and want them. Who communicates issues if they have them. Who tells me about their life and goals and desires and fantasies. Who wants me to know about them. Who loves me and has fun with me and laughs and cries with me. A friend, a lover, a true partner.
I need, want, and deserve a healthy relationship. Please.

Can I borrow your machete?

2012-01-17T21:50:00.002-06:00

I had my second one-month biopsy yesterday. It was painful. I don't want them anymore.
Well, I never wanted them, but I'm very tired of getting them and I wish I didn't have to get them anymore. Right.
Anyway, I casually asked my doctors yesterday if I could travel/what shots I was allowed to get in terms of vaccinations. They were a bit taken aback and said they've never had that question from a heart transplant patient. They said most heart transplant patients don't want to travel anywhere.
I'm not sure what to make of that.
I went on an epic hike, climbed down a slippery steep cliff, and skated on some frozen over bodies of water in the wilds of the Missouri forests on Sunday. I don't really understand why anyone, especially a group of people so stuck on the "I have a second chance at life" sentiment, would not take advantage of every fucking opportunity that comes their way. And not just stop there, make their own opportunities, throw themselves into experiences and journeys.
I know, I'm one to talk. I've been in a relationship for 3 years and have been figuring out how to get out of it for 2 1/4 years. I'm a hypocrite.
But that's not the point.
I'm still doing things that, apparently no other transplant patients do.
I don't understand people.

I don't understand myself. I wonder if I will ever feel satisfied in my life and experiences. My relationships. I am scared it will never be enough.
But is that a bad thing? Especially for me? Not to rationalize (okay maybe to rationalize) my flaws, but because of my extremely fucked up crazy relationship with my own mortality and the realization that I can, and will most likely, die relatively soon, why should I ever feel satisfied? Why should I ever settle?
I don't know.
I just feel selfish and guilty. As per usual.

Just because this path hasn't been made yet, and even though I might have to hack through dense vines and face scary panthers and shit, I would rather do that and get hurt and get dirty, than rot away wishing and regretting. So, can I borrow your machete?

Things falling all around me. Into or out of place.

2011-12-31T23:37:00.001-06:00

Things are so strange.
So surreal.
I'm having a really fucking hard time connecting to myself and my experiences.
Did I really just have my second heart transplant? Really? Why do I feel so...the same?
I mean, of course I feel better. I can walk forever, seriously, without getting out of breath. But what I mean is, for the most part nothing has changed.
I don't understand how it can. I can't envision how it will. I feel so helpless.
I feel so...unlike myself in every way possible. The me I knew a couple of years ago. The me who was strong and tough and knew what she wanted and how to get it but wasn't totally devastated if she didn't get it, and could adapt to anything with vigor and enthusiasm, almost to a fault.
Now I just kind of...adapt. And then become silent.
Earlier this morning I got really upset at something and had a mini-breakdown where I just threw all my pillows one by one as hard as possible against a wall. I've got to say it was rather unsatisfying.
Fuck. Everything is just so underwhelming. I think. I'm so...not anything.
I'm just here, you know? I'm just here and getting older. That's all I'm doing.
I feel like a pile of wasted potential.
Not because I feel sorry for myself, but just because I feel like there are so many things that I'd like to do and see and experience, but I don't know where or how to start so I'm afraid, so so afraid that I just. Won't.
And that frightens me unbelievably so.
How do I figure out where to start?

When I think back on the past few years I realize that I am just a child in terms of my ability to exist in the world. I have never lived on my own, I've never been anywhere alone, I've never really stepped outside my comfort zone save that one crazy year of absolute debauchery and hostile bodily conflagration. I have no fucking clue how to exist.

My transplant hasn't helped any of this. The disconnect I feel in relation to my experiences is bordering on scary. I can't wrap my mind around it. I can't understand why I'm still alive. Isn't that the strangest feeling in the world?
I feel guilty because I think I might need someone to validate that for me before I can come to terms with that. Am I alive because I'm supposed to DO something, or is it just completely random chance that I'm here lazily typing on my goddamn computer at 1am? It's so fucked up how random and unpredictable human life is.

I guess. I don't know. I'm totally out of Vicodin and am feeling lots of pain in several general areas right now. Maybe I'm talking out of a sensory stupor.
What do you do.
Take it as it comes.
Honor myself and my feelings each day.
Or something like that.

Feelings are like assholes...

2011-12-18T23:30:00.002-06:00

I know how I WANT to feel about everything.
About you.
About Him...

About HER.

But I can't move forward. I can get my heart cut out of my fucking chest and die a thousand deaths and bravely take on 7 surgeries, kidney failure, hip dysplasia, spinal arthritis, and 8 life-threatening blood infections all in a year. But I can't be true to myself. I can't take risks and I can't live the life I want to.

I'm a fucking coward.
I'm scared I won't ever not be a coward.
I'm afraid I'll wait until its too late and end up a lonely washed up shadow of myself sitting around feeling sorry because I didn't take advantage of the abundance of life I've been afforded.
I don't want to look back and wonder where the fuck my life has gone.
I don't want that.

I don't want to be a coward anymore.

Fuck.

News, but more importantly.

2011-11-04T19:05:00.003-05:00

I got my second heart transplant! I did! August 18th.
Yeah. It has been almost three months, I know. I was(am) so overwhelmed by the immensity of it all that I haven't really had time to process it, let alone relay any reliable information back to anyone.
That can all come later.
For now, I want to write a little soap box. Because I am upset.

An old friend died today. Charli.
Just a few minutes ago, actually. Charli and I had a bond only two dying kids can have. We knew. We got it. She confided in me and I in her about the daily stress and emotional baggage of living/growing up with a terminal illness. Her day-to-day was a bit more involved than mine at the time we were friends, what with her stomach hole and port-a-cath (it leaked sometimes when she overdid it at our work, Sonic), but we gave each other strength, understanding, encouragement, and sometimes justification for questionable behaviors. Like her smoking when she had a lung illness, and me drinking with a heart problem.
While part of me understands it might be a good thing for her to finally not have to fight anymore, another stronger part of me resents that fact immensely.
My mom said when she delivered the news "She's been fighting so long, now she doesn't have to fight anymore". She never HAD to do anything!
She never agreed to "fight" for a pre-determined length of time, that was her choice, and it wasn't much of a "fight". The use of that word just pisses me off! Fighting? Fighting what? The very word implies there is opportunity to win, there is something to win in the first place, that the victor will regain some normalcy. It isn't a fight if you will never win, it's a struggle. Charli knew no other existence than one beset with the realities of having Cystic Fibrosis. It was as much an irrevocable part of her as her awesome ears or her very personality. Just was.
Normalcy.
There is nothing good about Charli being dead, simply because she didn't choose it. It chose her. She didn't give up, it took it from her. And there is nothing, nothing but tragedy and sadness from that.

At rehab the other day my trainer said "It's so inspiring, that you've lived through this twice and you deal with all these health issues and you remain so upbeat about it. I don't know if I could do it." Don't fucking patronize me. I'm alive, same as you, it's just the way it is that I have to struggle to stay that way. I guess that's why Charli and I and those who are like us are the way we are. Because we deal with it- and unless you've experienced a life constantly on the verge of ending, beset on all sides with the promise of extinction- You'll always think you aren't sure if you could deal with it. You can, believe us. Or you die.
We aren't your fucking heros, we are neither pathetic, nor noble, nor stronger than you, we don't walk through life "fighting". We live, in the best way we know how, struggling until we don't struggle anymore. Not that much different from you. Yet vastly different, alien even.

To you, Charli. I'm sorry this happened, at this time, before you were ready. But if you were done living, I'm happy for you that you've moved on, and I wish you peace and comfort wherever you go.
I'll always keep you in my thoughts.

Happy fucking day of death and remorse. Fuck.

2011-06-30T21:47:00.003-05:00

Today is my 12th "heartiversary". It is the anniversary of simultaneously the most terrible thing that ever happened to me (and Katie, my donor) and the most amazing, awe inspiring.
So to say I have mixed feelings about it is an understatement.
First off, I feel proud, beaming at all the hard work I put in and the shitty health crap I deal with daily. I am strong, and today proves it.
But that's about the extent of anything good associated with today.
Mostly I just feel...like a failure. This is the first year I've been alive for longer with Katie's heart than with my own original heart. It's such a mind-fuck. I've always had immense feelings of inadequacy where that's concerned...feeling like I should do something amazing with my life to make up for the fact that Katie died, almost like it's up to me to prove that I was worth saving. That she didn't die in vain.
So...when I look back on the last 12 years and I don't see much, I feel like a failure.
And that leads to more self-pitying thinking.

Like the fact that I'm happy with almost no aspect of my existence. I love my roommates, but I hate my house. It's not conducive to health issues. It's dirty first of all. If I have a headache I have to ask 3 different people to stop what they're doing so the noise doesn't carry. I can't even have my boyfriend over to the house (I understand why, but it still sucks hairy peaches). I want my own place where I can have privacy and health and peace of mind and QUIET.
But I cannot afford it.
Which brings me to the root of most of my issues...money.
I live off of $644.79 a month. Plus the $120 I get for food stamps.
$180.00 towards rent and bills.
$160.00 on gas if I fill up once a week (not even including trips to st.louis, which would tack on another $40 per trip).
$20.00 for prescriptions a month (NOT complaining about how cheap that is, just adding it as an expense).
$40.00 for therapy/counseling (a necessity).
$40.00 for a massage (a necessity...though I think I might stop to save moola).
$200 for pool. Includes league, league fees, tournaments, practice, cue tools, chalk, new tips, etc... Which isn't a necessity, but I can't just sit in my fucking room my whole life, and I'm good at it so theoretically it could make me money in the future. PS...$120 is NOT enough to feed a single person for a month.

AHHHH the point is...I'm feeling terribly frustrated and depressed about my life. I can't fucking fill my time with hobbies that keep me occupied forever. What happens when nothing interests me? Or I don't have the money to do those things anymore? What happens when my body doesn't work anymore? When I'm in a fucking wheelchair from my fucked up back?
What will I do when diva house eventually fades away? What will I do when all my friends move on with their lives while I rot here...live in a box? I can hardly afford $180 a month, let alone $400+ bills. What am I gonna do?!
I can't get a job, not only because it fucks with the money I get from the government, but also because I am not a reliable worker! I need to work under the table to not have to claim the income, but who the fuck hires under the table?
Babysitting is an option, but some days I don't feel well, or I'm in the hospital, or the baby's sick and I can't come over. Who wants a dying babysitter?

And who the fuck am I kidding with this second transplant shit? It's not going to fucking change ANYTHING. I won't magically have money to move somewhere. I might not be healthy enough to work then, either. Even if I am healthy enough to get a real job, I have to be able to make enough money to support myself without social security, which means working constantly regardless of how I'm feeling. As a matter of fact it might be worse after my transplant because then I'll be HEALTHY and still not be able to live my life like I've been waiting waiting waiting to.

Sure...I do shit that interests me, I have hobbies and I have things that I genuinely love and that make me happy. But right now I feel like what's the fucking point in doing this forever? What's the point in living like this forever, constantly struggling and wanting more, and waiting, and being afraid.
It sucks. I'm depressed, and I don't know how to fix it.

It's all related.

2011-04-13T12:22:00.003-05:00

Sooo...
Yesterday I went for my re-evaluation after having my last infection in March. During this appointment, I meet with my cardiology team and my infectious disease team. We discuss how I'm doing, and general plans for the future.
During the cardiology meeting, my heart doctor and I discussed the risks/benefits of continuing on the IV medicine I get on a regular basis.
If I stay on the medicine, I will stay as a status 1b on the list. But I will also have to deal with the increased risk of infections, the bulged discs from the extra weight it puts on my spinal cord, and an inherent lack of ability to wear a dress, go swimming, take a bath, or have sex without being worried about pulling a one-inch needle from the depths of my ribcage.
The cons of coming off the medicine are that I would go down to a status 2 on the list, and my heart function could decrease, this would potentially mean a very extended waiting time, as people listed as 2's rarely get hearts. They really only give hearts to status 1's, a and b. What, I asked my cardiologist, would be an instance of a status 2 getting a heart before a 1a or 1b?
Simple, this person would be smaller than me.
Weigh less than me.
Be skinnier than me.
Because the hearts that are offered to adults are adult-sized, they go down the ranks to the sickest people. But if a small-adult sized heart couldn't be given to a child in the area, and all the adults on the 1a and 1b lists were too large for a small heart, it would trickle down into the status 2 people, who were small enough for the heart.
So...not only would I get a heart, but it would be younger, healthier?
I already have body image issues, and giving me an excuse to lose weight isn't a very positive suggestion.

Me and Ryan broke up. Well, I broke up with him. He told me he broke up with his girlfriend, and I was livid. We discussed nothing about our futures, he just assumed I still felt the way I did a year ago! I told him I wasn't happy with our relationship, told him I want more, different, better.
He accepted it at first, and then the next day bombarded me with texts about how sorry he was, and please give him another chance, and he promised he would be the "partner you deserve, and who deserves your love". I gave him another chance, and after some talks, it really did seem like he was going to change.
Sure, he hasn't called me an idiot yet, or told me to shut the fuck up, and he's been better about complimenting me.
But he also hasn't surprised me with a date, or done anything romantic, or schedule a meeting with my roommates (who kicked him out of the house, and won't let him back until he talks with them), or been very interested in anything I suggest we do together. He hasn't taken the initiative to plan anything special, do anything thoughtful, or "be more spontaneous and carefree" as he put it.
I mean, I noticed that he's more relaxed around his friends, laughs a bit more, and even has taken some drags off a cigarette once or twice, but they seem like desperate attempts at something he's not really into. And they haven't included me at all.
Seriously, either commit to changing, step outside your comfort zone and do it, or don't fucking offer to change in the first place. I don't see what the fuck is so hard about that.
Grrr.

At the zoo (I always go after St.Louis doctor's appointments). A man acted like he was going to throw his 4 year old son into the grizzly bear pit. And when the kid screamed and cried, his dad just said "Quit being a wimp, dude. You're acting like a little girl."

And THEN...at league last night, a few people noticed that I had gone up to a 78 rank, which is 6th highest out of 48 people (woo hoo), they laughed at me! "How did you get that high?" How about hard work you fucking douche bags? How about 20 hours of pool a week (at least!) for the last 2 years? Eh?
One guy called me a "greedy little girl" for it.
Then I felt like shit and lost the match, and I just KNOW he was thinking "haha, showed her who's boss!"
If I boast about my achievements, or take pride in my accomplishments, or accept compliments with anything but the humblest disregard, then I'm considered a stuck up bitch! I'm considered egotistical, I'm considered rude, full of herself, conceited.
If I said those things as a man, I'd be doing what was expected of me.
But because I'm a woman, I'm supposed to be a fucking wall decal? I'm supposed to bow and say sorry I won? I'm supposed to lie when people ask me how I'm doing in the league and say "I don't know how, but somehow I've gone up to 6th place! I'm totally clueless, hee hee" and twist my hair?
Well, fuck that shit.
Fuck all the shit in this post.

Lucifer and losing control

2011-03-29T11:40:00.003-05:00

I got a new tattoo, it's a portrait of Lucifer being banished from heaven. He is up against a rock wall, grabbing at his hair, a look of absolute anguish etched upon his face. His armor is beautiful, shining, and his sandals are immaculate. Everything about him is very angelic, and so it's very disturbing to see him in such turmoil. Then your eyes wander to his wings. His beautiful, terrible wings. Not the feathery white plume one is so accustomed to seeing on angels of his caliber, but scaly black, rippled, menacing bat-like wings, large and heavy and terrifying.

I don't believe Lucifer and God to be more than legends, stories that have a moral and lesson to be learned.

I can imagine the lesson that is intended to be learned. Lucifer was thrown out of heaven for considering himself equal to his superior. He was beautiful above all other angels, and because of his beauty/pride/ego, he became a leader of angels below him. Unfortunately, he led them to their doom.
God decided that Lucifer wasn't humble enough, that he was treacherous and proud, and that his ego was to blame for his attempted coup on God's throne.
The punishment was to be severe.
God banished Lucifer to serve eternity in a place opposite of heaven's splendor. A place called Hell, where Lucifer and all of the angels who followed him would writhe in pain and regret forever.

In my tattoo, I can understand how Lucifer felt. Abandoned, weak, remorseful, hopeless, absolutely devastated. Angry, resentful, seething with hatred and legitimizing his coup attempt in the first place.

This situation was inflicted to punish the traitors. There was supposed to be no worse torment than to live outside heaven, having known it's unimaginable greatness as home. As the reader of this story, this legend, you are to take away the lessons to obey those who rule over you, not to question them, to accept your place in the hierarchy of life, and not to let pride blind your actions, lest you be refused your place in heaven when you die.

But I see it differently.
Lucifer could have wallowed, as was expected of him. He could have sat in Hell, with all the angels around him having turned into unspeakable demons full of unchecked hatred and evil, and moped. He could have let the punishment break him, as intended.
Instead, he took his place as the ruler of Hell, and apparently, to this day still opposes God anytime he pleases.
He made the best of his situation, of his mistakes, of his cards he was dealt. He rose above what was expected of him and proved that he wouldn't be silenced so easily.

Quite a good lesson to be learned, if I (and my new friend Lucifer) do say so myself.

Vulnerable for the first time.

2011-02-28T21:00:00.004-06:00

I have been documenting my hospital stays the last few times I've been in.
I do this because I'm taught to hide the inner workings of the medical experience from people I love. I'm told it's better this way. People don't want to know how I get better, they just want me to be better.
Well let me tell you, it's not like I go to the hospital, am magically healed by a wand, and sent on my merry, healthy way. It is a long, arduous journey. One that is beset on all sides by torturous and sometimes medieval forms of treatment, a bureaucratic hierarchy of doctors and money-makers, a facade of quality of care being a priority, and a million other obstacles.

I feel like SHIT, I look like SHIT, and I'm going through HELL. There is no magical cure, this is my life with chronic illness.
Look at me.

Dealing with things of a dire nature.

2011-02-03T16:55:00.003-06:00

I think...from my own experiences and the conversations I've had with other terminally ill people...that I have a different view on life/death than others who are not ill.
I don't care what happens to my body after I die...cut it up, eat it, burn it, shit on it, fuck it, do whatever you'd like. It's no matter to me.
I don't fear death, I accept it, I've experienced it, I live it everyday. I have chosen not to be afraid because it's a completely wasteful emotion.
I avoid funerals, because when I go, I don't get sad. I don't cry when I hear of people I loved dying. I don't shed tears during the wrenching ceremonies. Death to me is, just a fact. It just is.
Consequently, when I do attend funeral services, I stay as far away from the crowds as possible, embarrassed by my lack of emotion.

Last night we watched, as a house, a few live autopsy videos, and controversy ensued.
Disrespect, they cried.
Disgusting, was inferred.
I was intrigued and got very very upset with the argument and had to remove myself from it. Who the fuck cares? It's a body, not a person anymore. In the same way a fetus isn't human until it's alive, nor is a human AFTER it's alive.
It's just a body. What the hell do I care what happens to it?

Harder than your average choice.

2011-01-17T14:21:00.003-06:00

I am trying. Trying to become a better person/listener/supporter trying not to choose my friends based on whether they can help support me with my medical problems, and trying not to get pissed when I do anyway, and they don't support me.
I'm trying to be okay with not knowing what my future holds, but that's so difficult.
I am trying to make concrete decisions, but I'm finding it hard. I don't know how. I worry about everyone else involved, and I feel selfish for thinking about how it affects me, and choosing what's best for myself, not others.
I am trying, and I am slowly noticing a difference, slowly but surely, I will be better at this.

What I want.

2011-01-14T19:53:00.002-06:00

I've been a hard working lady these past few months. Thinking, being introspective. Ryan's out of town for 2 months, and as always when we're apart my mind starts running.
I have been in and out of the hospital 9 times this year. For the same shit every time. This last time I finally gave in and brought my camera, to document what I went through and my surroundings. I was surprised when I found that it made my stay less...lonely. I knew people would see the pictures, comment on them, and know what I was experiencing as though they were there with me. I find it interesting that everyone I know with health problems hides them. For the most part, I do too...a huge majority of the people in my life think I have diabetes and that the pump is insulin. How's that for denial?
I have a new approach.
Tell everyone. Make them uncomfortable, give them too much information, if they don't want to look at the pictures of needles going into my veins, they can turn their fucking heads away. Seriously.
I always worried that sharing information like that would make people baby me. Pity me. I still fear that, but I quelled some of the worries by creating a pseudo personality, one as vibrant as the paragraph above. A woman who isn't self conscious about being perceived as weak/selfish/needy/over-informative. I want to embrace all that is icky about myself. All that may make you cringe.
Also, I found that by viewing my life in the hospital through a lens, I was able to disconnect in a way that wasn't damaging to my mental health. I could step aside and have a new perspective.

I want to do a burlesque show that focuses on people's insecurities, whether that be an "embarrassing" sexual fantasy, or a body issue, disabilities, mental or physical. I think it would be awesome to reclaim those issues and make them sexy. Also...I'm working on an erotic zine.
The end of my rant.

xoxo

Not a rave:

2010-09-09T23:22:00.003-05:00

A rant:
Last night, I went to the hospital. I have a history of sudden death, as in my heart has suddenly stopped and I've died. This has happened twice in the past. It starts with my heart losing rhythm and then slowing, and then, not being able to return to normal, it gives up. And I'm dead.
Soooo, when my heart slowed suddenly from 122 beats per minute, to 50 beats per minute, I decided I didn't feel like dying alone in my crappy bedroom, so I went to the emergency room.
It was a fucking waste of time. The admitting woman actually had me "hold on" after I told her what I was there for, so she could loudly and obviously finish her gossip session with her co-worker. When I got back to my room, the dumbass ER nurse kept insisting it's "protocol" to put in an IV. No, I have a port, I told her. I won that battle. Next, an idiot med student comes in, doesn't listen to me ("So, you're having chest pain?"..."No"... "So, where exactly does it hurt when you get the chest pain?"). Then the real doctor, who got offended when I said I wanted him to call my doctor in St. Louis, "You know, we have perfectly competent cardiologists here, why don't you want to see them?"...sheesh.
Finally, 3 hours later, the doctor comes back in and says I can go home. There doesn't appear to be anything wrong, and my St.Louis cardiologist would contact me tomorrow.

Well, this has happened now 5 times today. A huge difference from the other times I've had arrhythmias. On the discharge papers it read: If you experience shortness of breath (check), lightheadedness (check), or chest tightness (check) at the same time as the arrhythmia, or if it lasts more than 20 minutes (check) please return to the emergency room promptly.
I had all those things!! What the fuck? Why don't my doctors take me seriously? I know there is something very wrong with my heart! WHAT THE FUCK?

So home I went, and sleep I did not get, scared shitless that I would die in my sleep I sat awake writing letters and listening to music.

When no one from my cardiologist's office called me by 1pm today, I called them. "The nurses are all out of the office at this time, can I take a message?" the receptionist says, and I can't help but flashback to being in the hospital and the transplant nurse telling me that she sometimes ignores calls from annoying people who call in all the time. So I left a message and my number.
Four o'clock rolled around and lo and behold, no phone call.
Apparently, my heart almost stopping on a regular basis isn't cause for concern. Apparently, I'm being overly cautious and sensitive.
Let's not forget that I am on a fucking IV drip at home, giving me an antibiotic that's main side effect is "Muscle Deterioration" well, hmmm, my heart is a fucking muscle! Put two and two together? Maybe it's not such a long shot to at least consider that it could also cause arrhythmias, and to at least feign interest or concern.
Let's not forget that I just got out of the hospital a week ago tomorrow, for a fucking STAPHYLOCOCCUS blood infection! Let's not forget that my roommates are all fucking nasty unhygienic douchbags who can't wash their hands after they wipe shit from their asses, and who can't wash a dish with hot water or antibacterial soap because it's bad for the environment. Who can't fathom with their tiny brains, what it's like to be susceptible to disease and illness. That if I catch what they have, it's 10 times worse, and lasts 10 times longer.
And because of that, I now have the flu on top of everything. Very badly. Fever, muscle aches, runny/stuffy nose, sore throat, headache, the whole nine yards. Thanks, assholes.
I wore a mask into the kitchen earlier, and explained that it was to prevent everyone else from getting sick again, and thus infecting each other over and over. "But I already had it!" one of my roommates exclaimed.
"You can get it again, and besides, I have a resistant strain of whatever this shit is, because I don't have an immune system and..." This is when the person started the microwave and interrupted me to ask if anyone had ever tried the variety of squash she was holding.

I'm feeling super negative right now. Super Duper negative time.
Wah.
Wah.
Wah.
Blah blah my life is poopy sometimes, blah blah blah.
BLERRGGGhhh. ah.

Numb

2010-08-31T18:47:00.002-05:00

I'm numb to this.
I cried last night. I begged my body to let me go on this trip. I begged it.
It didn't work.
When my fever reached 104.8 around 6 o'clock this morning, I had to quit pretending like it would just go away. I went to the emergency room and soon thereafter was in an ambulance on my (not so) merry way to St.Louis. Again. For the same shit I've been in the hospital for the last 3 months.
I can't stand this shit.
I was going on this 2 week trip so that I could get away. So I could experience something new...which rarely happens at this point in my life.
So I could prove to myself that my doctors don't rule my life. That I have control over my life. That I have free will.
Guess I got taught a lesson, eh?
It's so nauseating, completely devastating, for me to have made this fucking HUGE decision...to take myself off the transplant list during one of the busiest weeks of the year (read: prime time for car accidents and thus organ donors) so that I could do this. This is a decision I've been rolling over in my brain for the whole time I've been on the list, almost 3 years, and it's a decision I felt guilty for, but had committed to completely.
I feel numb because I'm upset, but I can't express it. I'm sad and depressed and utterly deflated on a level so deep that it's not registering. I feel it in the deepest pit of my chest, in the core of my being.

I feel completely defeated.

I feel like I am being punished, but in vain I try to find an answer that doesn't exist, I can never know if that's the case.

This is something other than suicidal. I don't feel like not living anymore, but I don't want to do this shit. I don't want this body. I don't want it.
I wouldn't give it to anyone else...that's how much I hate it. I would never wish it on anyone, ever. I just want to live my life like a normal fucking person. A healthy person who is dumb to the horrors their bodies can wreak. To the loss of control that illness brings. To the inability to control even a SINGLE fucking aspect of your existence.

I want to live in oblivion to heart failure and kidney failure and blood infections and surgery and death and I don't want to be some stealer of organs. I don't want my liveliness to DEPEND on someone else's death.
Shit.

Well...I guess I'll deal with it, because it's better than the alternative, but that's certainly a shitty couple of decisions.

Engulfed, Enclosed, Enveloped, In Rapture.

2010-08-29T23:39:00.004-05:00

Sometimes. I feel like...and I'm aware of the relative ridiculousness of this statement, but it's fitting and it makes sense of things I can't make sense of otherwise...
I think part of my soul is bound to a different place.

I've been getting flashbacks again, flashbacks of my dreams.
From long ago.
My eyes glaze over and it's like I'm there. I had the weirdest experience yesterday, trying to write down my dream from the night before, and a part of the dream reminded me of a very odd one from high school.
A dream I wrote down but avoided since. I even folded the page in, so that if I was scrolling through the journal, I wouldn't get sucked into it.

As I was writing about my dream yesterday, I remembered it.

My eyes were fluttering, nothing else on my body moved. I was frozen, my hands still in position on the keyboard (I now keep dream journals on my computer) and I was fighting it. I had tears in my eyes. I didn't want to go there...anywhere but there...but that fucking beach. I tried so hard to snap back into reality, but I just couldn't. After a few futile attempts at bringing my mind back to the present I was there.
The sound of the waves, the smell and taste of salt in the air. The gray sand, and the even grayer skies. The purring of the clouds...like constant thunder. The water in the ocean is gray, too. A slate/gray/black color, and the foam, cream colored.
I stand, facing the water and the infinite skyline.
Behind me, there stands a two-story light gray wall made from over-sized concrete blocks. There are stairs leading up to the wall, and you make a short journey across the top to the stairs leading down to the other side, where a grocery store resides.
I walk, slowly to the water. I simply want to feel the waves cover my feet. I relish the first wave, my eyes closed. I open my eyes to watch the second one. I spot something small and black in the water. The waves brought it near my feet, only a few steps farther forward...
I see a dead child. An infant, bloated, green and gray and red and rotting. It's mouth is horrifyingly twisted, into an adult expression of extreme agony.
I scream, but per usual in my dream world, nothing comes out. I weep as I move the baby with a stick out of the wave's arms.
I have to go all the way to the grocery store to get a black trash bag. I anticipate it won't be, but when I get back to the beach, the dead baby is still there.
I turn the bag inside out and grab the baby, then flip it back right side out, so I avoid touching its peeling skin. It's rashy, splotchy, flapping-in-the-breeze chunks of flesh.
I run to the grocery store, and for some reason I have to put the bag through the checkout, maybe to see what I have to do with it. As it's going on the conveyor belt, it starts moving. The bag is rustling, and people start looking at me funny. Suddenly the most horrifying, loud, piercing, tormented, miserable, formidable, spine-tingling, hair-raising scream I've ever witnessed, came creeping out of the bag. It slapped me in the face. My ears fucking hurt, they start bleeding, I can feel it running down my neck. The scream stops. I stare at the bag, and no one else is left in the store. The bag moves again, and out steps the decaying child. It looks at me, one eyeball flopping about. It slowly raises it's hand and points at me. I scream, and a bag boy suddenly appears and tackles it.

I remember, suddenly, that this is my child. I was pregnant, I was with child, but didn't want it anymore. I took it from my womb and threw it into the ocean. I forgot about it, blocked it out of my mind.

I am furious at this...thing. I remember, and all the hate and resentment come rushing back in a flood of emotions. I grab something hard...perhaps a broom. I start beating the sack on the floor. The bag boy joins in, kicking and punching the bag. The squishing sounds are sickening. I finish by grabbing the bag and slamming it over and over again into the linoleum floor. The boy grabs my arms and leads me to the dumpster outside with the bag. I toss it in. I feel better.

But I'll never forget the way that infant looked at me, and the way it accused me of an unmentionable crime I'd forgotten.

And so...this is why I think I'm torn between two...maybe more...places. These dreams are like nothing I've read about. They have nothing to do with my real life. Oh, sure I have dreams that I can easily identify, like Heath Ledger walking by in a towl...classic. But a rotting infant and the ocean? The scream?
I've had dreams in which I get some kind of wound, someone touches me, once I got my wrist pierced...and I can feel it. Completely and totally. I feel the pain as if it's completely real and happening.

What's so boggling to me, is why it's crossing over. Is it possible for your dreams to pull your mind into them? I'm awake, I'm doing real-world stuff, like walking, or painting, or typing...and suddenly I'm there, I'm not asleep. I don't understand.
But what's so scary about the whole thing is that I don't want it to stop. I feel like I'm a part of something bigger than me. Infinite and eternal. I feel like I am a part of something ancient, and that the more I get involved in it, the more I can learn. The more I can understand. I don't want it to stop.
I used to want it to...because I thought something was wrong with me. Voices started talking to me in the dreams. I had many dreams about various apocalypses. I had prophetic dreams (you don't have to believe me), where what I dreamed, happened later.

When I was approximately 7 years old, my mother used to stop at a store in Lincoln, Ne called "the way home"...if I remember correctly. It was a native-american shaman inspired store. She would stop to get her tarot read, or her fortune told by the in house psychic. There was an old native american man who would stand at this glass dome covering a miniature weathervane, we're talking the size of my pinkie. Once, while I waited patiently for my mother, I asked the man what he was doing. He told me he was moving the weathervane with his mind, strengthening it. I asked him how, and over the next few visits, he taught me to prepare my mind using exercises, like moving my hands until I felt a sponge-like substance between them. After I learning to tune into my mind, I tried controlling the weathervane, and it bent to my will. I could turn it left or right only, of course. No matrix bendy shit. But it was a powerful experience.

I know it must sound like total bullshit. But I assure you, these are real experiences.

There was a time once, sitting in art class, when suddenly I looked up from my table and said "the phone's going to ring"...my friend at the time looked at me, and the phone rang. After a while there was a group of people around the table, freaked out, skeptical. I predicted 4 phone calls and 3 songs on the radio, then it was gone. It was very weird.

I used to think I could detect Auras, before I knew what Aura's were. I could...feel...not necessarily see...a certain energy around particular people I encountered. I associated those energies with colors. I eventually started to feel crazy, and only told a few people, who also made me feel crazy. Recently, I met a woman who is now a dear friend. I can detect the strangest Aura I've ever been around. It's invisible. She's like a piece of lace. Her connection to this earth is thin, wispy, and all around unattached. Perhaps attached like a spiderweb to a wall.
It's made me start thinking about the Aura detection again. I had pretty much put all that behind me. I had stopped tuning into energies.
It's all so big. So much bigger than me. But I think I'm ready to learn more.
I'm skeptical...I mean, maybe I'm really just totally insane. Maybe I have schizophrenia (it runs in my family) or something. Or maybe, I'm not completely of this world. I like that option better.

Fin.

The morning After...

2010-08-26T00:18:00.002-05:00

Whew...it's been a long time. 3 months almost. This year has gone by incredibly fast. Ironically, the reason I haven't been posting is related to my health, but that's another story completely.
So here goes...

I woke up, back in the ICU, only this time a different room, smaller.
The first three things I did with my new life were: feel the extreme urge to piss, feel extreme anger at the surgeon for lying to me about the anesthesia, and feel thirstier than a deserted traveler in the desert after 4 weeks of walking and maybe this person ate a bit of sand, too. Also, dirt, and cactus barbs for good measure.

I don't remember feeling any pain. I wasn't breathing on my own, and what a peculiar feeling it is to have your chest moving up and down with the expansion of your lungs, and to not be doing it yourself. The machine made breathing noises, even.
I couldn't see very well those first few hours after I woke up. I slipped in and out of consciousness, and it's like a dream even now. The sound of suction as my family slurped the saliva I wasn't able to swallow out of my face with a spit vacuum like they use in dentists offices.

My mom's face above me, my dad and amy and my sister, nurses, doctors, everyone looking down on me as if I weren't quite part of their world yet, but definitely not part of the world I'd known before.

There was a small ball in my hand, with a button, and the ball was secured to my hand with tape and fasteners. Michelle, my nurse explained to me during one of my bouts of alertness, that if I felt pain I only had to press the button, and a dose of pain medicine would be delivered to me. I did it before she stopped talking, and a satisfying beeping noise was predecessor to my passing out.

I pressed that button a shit ton those first 24 hours. It was only later that I learned it only delivered pain medicine in controlled doses over several hours, and that the button was shown to increase recovery time by empowering the patient.
Interesting.

What must have been, I would guess, about the 23rd hour out of surgery, it was time to take out the breathing tube. "This isn't going to feel very good, but it's a positive step forward in your recovery. We are going to count to three and on three you have to cough as hard as you can, and we'll pull out the tube. You'll feel a lot of pressure, but it's okay."
everyone knows that "lot of pressure" means pain.
And it was painful.
On three, I coughed as hard as I could, which was more akin to a mouse whisper than a "cough". They tugged the tube out hard and fast, ripping the sides of my esophagus. I could taste the blood in my throat, and I screamed my newborn scream, loud, long, satisfyingly intense and horrifyingly real. The only thing missing, really, was the doctor slapping my ass and handing me to my mommy.

But, I could breathe. On my own, laying down, no puking involved. Without the loud noises the machine made while breathing for me, I was able to hear the slow, steady beating of my new heart. The healthy and strong way it moved my body while it beat, ready to go, ready to support my youthful endeavors. It got a second chance, too, you know. It got scared shitless when it thought it might die in that girl, and now here it was, being alive, eager to prove it's worthiness and dedication.
"I want to talk to the surgeon"...those were my first words.

The more I woke up, the less pain medicine they allowed me, the more real my experience became. I was so fucking thirsty. Worse than I could ever possibly explain. It had been over 48 hours since my last drink, with the immunosuppressants the night of my surgery admission. I was hydrated from IV drips, but my mouth was desperate and my lips were chapped and cracking.
I begged, cried, squealed for water. "Please, give me water" but all that was allowed were these tiny little sponges, flavored like cotton candy and bubblegum. I think there was a nasty cherry flavored one, too. They were only as big as a nickel,
and held about 6 drips from a faucet of water. It was worse than just being thirsty. It was torturous.
I convinced my Grandma (rest her soul), in my raspy broken voice, to break the rules when no one else was around. To refill the sponge over and over, and after several refills, it resembled something like a drink of liquid.

It was time to sit up now. Maybe halfway through the second day in ICU. The bed was slowly raised to allow me to sit up. Excruciatingly painful, it felt as if my insides would burst through my chest.
But I was sitting up, and after a bit more pain medicine, I was ready to see Dr. Behrendt, my surgeon.
Here he is:

And while we're at it...my transplant doctor who took care of me before and after my transplant until 2004, Dr. Edens:

Dr. Behrendt walked into the room with a swarm of busy bumble bee students. He was very jolly acting, excited to see my remarkable progress. He just thought I wanted to thank him. His face was very...irritated, when I accused him. I said in these words, or close to them "I want to tell you something. You lied to me. I'm very upset with you, you told me you would let me know when you were putting me to sleep, and I don't remember that happening. I remember them telling me they were putting oxygen on my face, and then I woke up here. I could have died, and the last words I ever would have heard, would have been a lie."
He was completely dumbfounded. He apologized, and I was silent as he awkwardly backed out of the room, with a look mixed with annoyance, shame, and frustration. Mostly annoyance though...because he probably thought I was an ungrateful little bitch.
Which I realize now, I kind of was. My heart didn't magically insert itself into my chest, this man, this stranger had taken 7-8 hours of his time to calmly, patiently, and lovingly (seriously, look at the amazing job he did on my scar, or lack thereof) make my life better. I didn't even say thank you.
I also realize now that I could have fallen asleep on my own from the pre-sedative, or I could just not remember them telling me, or might not have heard the words clearly through all my anxiety and crying. I feel kind of bad. Maybe I should write him a letter.

Anyway. I was sitting up. Next hurdle: learning to walk. Next time, on day's of my life.

<3

Home is where the heart...dies.

2010-07-05T11:32:00.005-05:00

Okay, the last post was like a brief intermission in the story telling.
Now I'll resume.

I left off going home...Okay.
Home. Leaving the hospital was simple enough. They gave me medicine to take everyday, and a pager to my mother, so she would know if a heart came.

Home was...surreal. The dynamics of living in a space where everyone is tip-toeing around an issue are very unnerving. My mom's usually rocky relationship with her shit boyfriend, Scott, was now hush hush. No one argued in front of me. My Aunt and Uncle and 4 cousins came to stay with us for a couple weeks from Nebraska.

I felt pretty stable. If you didn't know better, you'd think nothing was wrong with me. I played with my family, we set up a tent in the huge front yard and grilled out on the concrete patio. I remember my hamburger didn't have seasoning (low salt diet) and was shaped like a heart. I also remember sneaking my favorite food, pickles, when no one was looking.
On a couple of occasions, I got to go to school. I would get dropped off by my mom, and then she would pick me up at lunch. I was treated like some sort of celebrity. There was even a camera crew that showed up in the principal's office one day. They followed me around school and did an interview with me, too. I was the bees knees, the talk of the town. The sad little dying girl that everyone wanted to be a part of for a short time. Everyone is attracted to tragedy, or so it seemed.

My life went on like this for about 2 weeks. My family eventually needed to go home to their own lives and jobs. Once it settled down, and school was over for the summer, life was very routine. Wake up, eat a peanut butter and honey sandwich, take medicine, watch TV, eat dinner, sleep.

I still slept sitting almost completely upright every night. I coughed and coughed, and puked regularly because of the fluid in my lungs. My heart was three times the size it was supposed to be, so my movements and thoughts were sluggish at best.
I was a shadow of a person, and certainly not very childlike. It's pretty hard not to lose that innocence when everyone around you is whispering about your death, and you overhear your mom planning your funeral on the phone. I could see through everyone's fake kindness and I resented it.

Three weeks came and went very quickly.
The 29th of June.
That day started like any other. Routine, normal, or as normal as could be expected.
The day passed, and I got ready for bed. But I felt weird, strange, surreal. I remember feeling a calm presence.
I don't even know what that means, or if I'm explaining it correctly. I just felt...calm. My mom went to bed, and I went into my room. The lights were all off and I laid on the floor. I could see out the window of my room and I stared at the stars for the better part of an hour, then just sat in the middle of my floor, bathed in moonlight. I wasn't thinking about anything at all. My mind was completely blank, just trying to understand what I was feeling. Something was going to happen. I started thinking maybe I would die if I fell asleep, like maybe my body knew it would die tonight. So I wrote letters to my mom and my sister and put them on my dresser, and finally fell asleep.

I couldn't have slept long, and suddenly I shot up from my bed. Wide awake I looked at the alarm clock and it blinked 2:50AM. I sat in eerie silence for a few seconds, feeling really fucking creeped out.
When the phone rang from the kitchen, it scared the crap out of me. I jumped out of bed and went as fast as I could to the hallway. I was out of breath as I listened to my mom groggily answer the phone. The house was a renovated pole barn like I mentioned before, and my mom's room was the loft above the huge living room. It used to be the hay hold. Everything that was said or done in her room echoed throughout the main part of the house. So I slumped to the floor of the hallway and listened.

"Really? When?" She said. Her voice had perked up a bit. "Yes, of course, we will".
The quick conversation ended, and I heard her getting out of bed so I got up and went back to my room. I tried my best to look like I had just been woken by the phone.
She came in my room expecting me to be asleep still. She was crying when she told me they had a heart for me, so we had to get our things together now and head to the hospital. We had time for a quick embrace before it all started.
I went into a daze. I was feeling every single emotion possible all at once and my brain simply shut down. I was a zombie.
Fear, impossible debilitating fear was the first emotion I remember feeling. I was going to die. There is no freaking way they can just take out my heart and I'll survive. I'll be a different person. I'll have ugly scars. My boobs! I have to ask the doctor if my boobs will be maimed in the process. I have to stay strong so I don't freak out my mom. I can't look at her. I can't look at anyone. I have to stay strong. If I die, oh well. Oh no, I don't want to die. I'm only 11 years old! Why is this happening to me? Why can't this all just be a dream? Why can't I wake up?!

This went on in my head the whole time we got ready, which wasn't very involved. We had already packed bags and they were already by the door. We only had to wake up my sister, put on clothes and drive away from my house. I ripped up the goodbye letters I had written my family, and tossed them under my bed before we got in the car. Scott, my mother's boyfriend, was there and actually was the one who drove the hour to the hospital.

At this point, I was numb. I was feeling overwhelmed. I was anxious to get to the hospital, what if we were late? Why wasn't he speeding (which he probably was)? Weaving in and out of traffic? My mom tried to distract me by having me call family and tell them. I called my Dad, and he said he and Amy (momma)were on their way. My grandma and grandpa, aunts uncles cousins friends were all called and on their way as soon as they could leave.

When Scott stopped to get gas I found myself feeling annoyed and irritated, but unable to express anything except being obviously dumbfounded. The people on their way to work or going home after partying at 3 in the morning had no idea. They had no clue that I could be a few hours from dying. They had no idea that I was going to have my heart removed from my body. They didn't know, and they weren't affected by the outcome. Life lessons.

I stared straight ahead the rest of the trip. I stared straight ahead as we pulled up to the hospital and I stared straight ahead as my mom helped me into a wheelchair and as Scott pushed me the old familiar way to the children's floor.
We got to the floor, and apparently we were the only ones in a hurry. No one was there to greet us, and we had to walk up to the nurses station to remind them what we were there for.
I got the worst nurse of all time. I've blocked out that bitch's name from my memory. Grrrr.
She was an old lady, probably in her mid 60's. She had a limp when she walked, like her hip was higher on one side. And her voice was high pitched and grating. She took pleasure in making patient's lives harder. She liked to torture us. Me and Sidney used to make fun of her behind her back, and we dreaded when she was assigned to us.
Anyway, I didn't care. I was actually nice to her, even though she was being a wench and asking my mom why she was crying. "It's fine, she's getting a heart, you should be happy". My mom wanted to punch her. She didn't.
The doctor's finally came in an hour later. They informed us that the brain dead donor's family had just pulled the plug a few hours away. The heart had to be harvested and examined, then confirmed and flown to us. This would all take a while, so I should try to get some rest.

My family sat with me while I was changed into a hospital gown (prom dress!) and I started to calm down a bit. I had a little more time to compose myself instead of being thrown into surgery like I had imagined it would be.
A couple hours passed, and I was actually conversing with my sister. We didn't talk about my health, just about school or friends or whatever...I was avoiding the issue.
At 8:00 in the morning, I had the first round of immunosuppressants shoved down my throat...literally. They handed me a cup full of the nasty little skunk-smelling gray liquid gel caps. It was Cyclosporine
And nurse horrorpants was there to make sure I took every pill, her favorite game. She sat in front of me like I was a baby, and every pill I ate, she made me stick out my tongue. I was humiliated and sickened. I downed what must have been 20 of the nasty things before I started feeling nauseous. I needed to puke, but the nurse wouldn't let me move. I finally had to physically push her out of the way to get to the toilet in time to puke up all the pills I had just taken. Doctors started coming in, and they said the heart was en route to us.
"See, you have to take these, there's not much time left" the nurse pressured me. She was acting like I was doing it on purpose!
"You'll have to take these everyday for the rest of your life after you get out of surgery, and you can't puke them up then!"
The same thing happened 3 more times and I was getting exhausted. Swallowing all the pills, puking. Swallowing all the pills, puking, Swallowing all...the pills...puking.
Finally a doctor suggested giving me the oral solution and though it was gross, it worked and I didn't puke it up. My immune system would start shutting down in anticipation of the new heart.

I fell asleep for a short time. It couldn't have been more than a half hour before I was woken up. "We're moving you up to the surgery waiting room".

I got into a bed and my family followed me in the elevator to the 6th floor. I was rolled into a large room that had beds lining it. Only curtains separated the beds. There was a man asleep across the room from me, and a lady a few beds down to my right. They were waiting for some kind of surgery, too.

At this point they must have given me some kind of medicine to make me relax. I was pretty loopy. I joked around with the nurses, and my family tried to keep me calm. I felt anxious and started shaking badly. The doctor told me it was the immunosuppressants kicking in. I was worried about how it would be taking this medicine everyday for the rest of my life. If I lived.

My surgeon came out to meet us, and it was the first time I'd ever seen him. I explained to him that I was worried about my first time with general anesthesia, I didn't want it to be like in the movies when they told you it was just oxygen and then you wake up 3 hours later. I shared with him my fear of the last thing I might ever hear in my life being a lie. "Tell me honestly what you're doing, when you're doing it please." He agreed.

It was time.
I was so anxious. I can feel it now. I was overwhelmed and anxious and I could feel everyone else's anxiety, too. I experienced everyone's fears as strongly as my own. I was overcome by it all. I went numb again. My mom started crying, and she took my stuffed duck from my bed as they put the blue stretchy hat over my hair. The nurse made some joke about how it was the newest fashion statement and gestured to her own hat as a sign of solidarity. She was nice.
I assured and reassured my mother as she started freaking out. At the entrance to the surgery hallway, she kissed my head and we said I love you. As the doors swung shut, I heard her yelling at Scott and saw him grab her around the waist.

I was completely alone now.

Alone as I was wheeled down the metal hallway. Everything was stainless steel and white. It was freezing cold and smelled like rubbing alcohol.
The bed hit the two swinging doors into the surgery suite. It was blindingly bright. There must have been 20 people in the room. Nurses, doctors, techs.
There was a table in the middle of the room and I had to scoot across to it from my bed. It was hard metal and cold. A nurse came up to me and bent over my head. She told me to turn to the table on the right. She gestured at a red and white drink cooler. "Your new heart is in that cooler!" and smiled. I was disgusted, I think. I smiled, but what I noticed more than the cooler with a dead girl's fresh heart in it, was the array of scary looking medical equipment. There were hundreds, hundreds, of tongs, scalpels, saws, scissors, pans, tubes, catheters and a chest separator that really freaked me out.
And this:

I was pretty spooked. All of a sudden people started going really fast. Everyone was rushing around, and it did nothing to help me feel any calmer. No one was talking to me, and one guy kept asking why I was still awake, which made me feel completely invisible. The same guy took my clothes off without looking at my face. I was a body to him. Just a body that he had gone to school to fix. Like a mechanic and a broken car.

He was rough as he tugged at my arms, and I was looking somewhere else entirely when I felt a sharp stick in my left wrist. I didn't jerk my hand away luckily for him, but he gave me no warning and I felt myself getting scared and I started to cry. He didn't acknowledge me, and said "we need to get her asleep asap". The vein blew and he apologized and said he'd wait to do it again when I was asleep.
I was completely naked in front of all the people in the room when they started scrubbing my chest with orange stinky betadine cleanser/disinfectant.
"We're going to give you some medicine now that will make you feel calmer" I heard from...somewhere. I felt myself getting calmer, though.

They strapped my legs and arms down with restraints, and I asked my doctor to come over to me. I asked him to come down so I could speak to him in private, and took that opportunity to ask him if my boobs would be affected. Hahaha...he laughed but assured me I would be okay, and he would not mess up my breasts.

Then they tried to put the oxygen mask on me, but I turned my head away from it. I told them again that I didn't want the medicine without warning. They agreed, and the mask was put on my face. There was no warning, and I felt myself slipping...somewhere between sleep and death. It was 12:00pm on June 30th, 1999 when I died the first time. And it would be that same day when I was reborn.

Whew. That was a long one.

stop talking... that hole is getting huge.

2010-07-02T01:29:00.003-05:00

As a beginning side note, I went to the first show I've been to in a while. I had to go, it was THOU, a really good doom band. I had been planning to go for a month, and hadn't been planning to be in the hospital... so fatigue be damned.
Anyway. I made some observations.
I am soooo over the "punk scene". I'd realized this before, but now it's pretty cemented in my existence. It's so stupid and pointless. The same exact conversations night after night about "punk stuff" like what cool shit you dumpster dived, what misdemeanor crime you got away with, what band you partied with last night. How wasted you were.
It's annoyingly repetitive. I tried to remember how I was when I identified with all the people I saw tonight but I just can't. It seems like a lifetime ago, it feels like I'm an entirely different person.
How can so many people have so few goals or aspirations in life?

ANYWAY OFF THE SOAPBOX.

I left off with my first encounter with Sidney. Ah yes...

After that first official meeting, we became inseparable. I felt like a kid again. I was up walking around, and since she and I were the only children who weren't bedridden or infants, we had full reign over the entire children's floor. It was a bit creepy because only about 10 rooms were actually in use.
It was an entire floor of winding hallways decorated with 80's style disney characters. Mickey mouse ran along the floor board flying a kite and a flaky Minnie ate a picnic under a tree with a faded Donald Duck. The whole back part was completely abandoned, but with plastic blocking it off.

One day, we wandered past our usual haunt, the "teen lounge" (which consisted of a shitty pool table, chalkboard walls, and a computer with internet access), and through the plastic. It was a child's dream world.
A whole nurses station with a broken computer, and office chairs. There were tons of wheelchairs, and beds in all the old rooms. We ran back to our rooms and grabbed all our stuffed animals.
I don't recall which ones she had, but I brought a plush Winnie the Pooh, a duck I called "quack-quack" and a couple bears I had acquired over the course of my long stay. The nurses who loved us lent two clipboards, some paper, pens, and two lab coats. On our way back to the playground, we stopped at a cart and sneaked out medical supplies. We played doctor for hours, sitting at the nurses station filling out fake paperwork, ordering medicine, and treating our patients.
It was through our game that I learned Sidney had Cystic Fibrosis, a fatal hereditary disease with no cure. She'd been dealing with it since birth, and would need a lung transplant eventually. Even then, her disease would attack the new organs.
At that nurses station, Sidney 13 years old, and I 11 years old, talked about our deaths. She believed that she would live as long as she was meant to, and that she would probably die of getting hit by a bus, knowing her luck. I was still skeptical, but quick to adapt her upbeat way of thinking. It wasn't scary if I looked at it like that. All our animals had IV's and were sleeping when we started re-arranging the rooms. I was so oblivious that I didn't feel a thing when my nurse came running into the room. She looked at me with surprise and sat down to catch her breath.
"You need to come rest for a while, your heart rate is up to 185 beats a minute!"
I didn't even feel a thing.

The days flew by. We visited the intricate glassed-in doll houses in the upstairs hallway, and rode the elevators to every floor over and over again. One night Sidney and I had a sleepover. I bunked in the empty second bed in her room and we rented the movie "Arachnophobia" from the hospital library. We were scared shitless! It didn't help that there was a thunderstorm outside, and Sidney had told me earlier that the windows across the courtyard from us was where they kept the criminals. We had seen a man in cuffs and an orange jumpsuit earlier that day, and it seemed plausible. We took turns peeking out the blinds to try and see a criminal in bed.

The day I went home was very incredibly bittersweet. I wanted to leave, but I wanted to stay more. The place had become comfortable to me. The doctors knew me, the nurses loved me, and I had made a very good friend. I was scared about what was going to happen when I got to my house. Afraid of the hordes of people, questions, and expectations.

We said a short goodbye, hugged, and gave each other a present. She gave me a junk toy from the treasure chest (for when you do well in the treatment room), and I gave her a drawing of some fireworks. I finally left the hospital.

I never saw her or heard from her again. There is a small bit of footage of her from a day in the hospital when my mom gave me her video camera, but it's less than a minute, and its from behind so all you can see is her long thick blonde hair.

It's as if she was meant to meet me at that time. As if she knew what she was doing by being my friend. I asked about her in the years to come, but no one ever knew who I was talking about. It was as if she never existed.

HOME.

Take a picture it lasts longer.

2010-07-01T03:15:00.002-05:00

My eyes are bloodshot from crying. Tonight has not proven to be as good as I'd hoped. What's the deal? I'm out of the hospital, I feel tired but otherwise relatively fine.
I got chocolate.
It's my anniversary of my heart and I'm feeling super disoriented, so if you'll excuse me I must tend to my brain before it dies completely. or explodes.

The picture on the wall is crooked...

2010-06-26T22:19:00.004-05:00

I left off with me and nurse Angie sitting on my bed in ICU crying in an embrace. Well, the story doesn't get much more peppy from there on out.

Somehow, the rest of that day I managed to have all to myself. I said I was tired, but really I was just emotionally shutting down. There was a small radio set up next to the wall on the right side of my bed, so I put on the Sarah McLachlan song "Angel" on repeat and laid on my stomach for several hours, crying and trying to come to some sort of mental agreement with myself about how I felt towards my imminent death.

That was an intense day, but I didn't accomplish much. I came out of that Sarah McLachlan experience more emotionally numb than ever before. I remember thinking I needed to be strong for my family, that if I let them know how much everything was bothering me, they would be devastated. They needed to believe I was coping on my own.
Otherwise, I might push them away by asking too much from them and I certainly didn't want that to happen, no matter how unlikely it was.

The hospital stay got worse after that. My health deteriorated. I wasted away to skin and bones, and my normal resting heart rate was 160bpm. My aunt signed me up for make-a-wish and I was accepted, but was too sick to have it fulfilled until after my transplant.
I laid in bed for so long that my muscles atrophied.

One day, nurse Michelle was told to take me on a walk. I remember my little sister being there, and as I walked down the corridor with 10 IV bags hanging from a pole, oxygen in my nose, and two nurses holding my arms upright so I didn't collapse, I felt the first twinge of guilt about my sister. Guilt for stealing the innocence of her childhood with the abrupt loss of mine. From not allowing her any attention because I couldn't help but consume our adult's energy supply completely. I felt like a joy vampire, one who lives off of consuming everyone's love and happiness with my tragedy, so they have none left to give to others.
So then I compensated by being ridiculously accommodating and impossibly positive and happy. Killing my emotions to cover my own fear.
How was I? FINE
Did I need anything? NO

Later that week, nurse Angie came into my room. She basically explained to me that unless I got a transplant soon, very very soon, I would die. She very bluntly asked me if I wanted to die in the hospital or in my home.
I dryly said my home.

The next few days were spent moving me to the step-down unit where I was to stay for a week, then go home...to die.
I was depressed when I got there, and didn't have any interest in seeing anyone anymore. Most of my extended family had left to go back to their respective states, until I went home, when they would return to hold a vigil and be with me when I died.

I stayed like this for a day or so, until I decided to go for a walk down the hall with my nurse. I hadn't been to that unit since the very first night and I wanted to explore the winding hallways and find that scary treatment room. I wanted to see if that place held any puzzle pieces I might be missing to make the whole ordeal fit together in my mind.
What I found was a thousand times better than any puzzle piece.

I asked to walk by the room I was in that first night. Room 15. As we approached I saw a familiar sight. A sign on the door. A passive aggressive note about staying out of the room until after 9:00am. No matter what.
I asked if the girl, Sidney, was still there, and my suspicions were confirmed.

The next day, I felt a little better. I asked to walk around on my own, and was allowed to. I walked past her room, but no luck. The next day I felt even better, I even dressed (for the first time in 5 weeks) in my own clothes instead of the no-butt hospital gown that I'd come to so lovingly refer to as my "prom dress". My green tank top slid off my shoulders and exposed the sharp collar bones above my sternum. My jeans had to be held up by a string because I didn't have a belt, and the wires and leads from the heart monitor were sticking out everywhere. I looked scrappy, to say the least, but I felt something I hadn't in a while...hope.

I went to her room again that day, and this time she was there. Standing in front of the mirror, blow drying her hair and chewing gum. She saw me in the mirror and smiled, then shut off the dryer and turned to me. "Hey, you're that one girl with the crap heart, right?" I nodded, a bit shocked at her bold language. Until then my "condition" had been but a whisper on everyone's lips, something they were trying to hide from me, a rumor that maybe wouldn't be true if only they never said it aloud. The proverbial Voldemort of my life. The disease that shall not be named...

She asked what they did to me, and what was my diagnosis. I explained everything, eventually obviously becoming depressed and saying I was going to die soon, and that I was going home the next week to do just that.
She cocked her head and looked at me with a mix of sympathy and annoyance.
And she uttered the most helpful words anyone had ever before or since said to me.

"We all gotta croak sometime" and with that she turned back to the mirror and started the blow dryer again, never losing eye contact with me.

THAT's all for tonight.

Update on my current hospital situation: nothing has happened because it's the weekend and no one does anything during the weekend in hospitals. I have had really awesome nurses so far this time.
I know there is something wrong with my body. I feel sick. Nausea, headaches, NO appetite, etc. No fevers since I've been here...but then again they've only taken it twice since last night so who can be so sure?
My port feels poopy too. And I have a migraine.
But on the bright side, I had 3 visitors today. No Ryan. But I got a Koren and Grant.
Koren brought me a rose, balloon, sparkly spray, and the physical touching I needed so desperately. She petted my hair and rubbed my feet. Her presence is so calming to me. I really like it. Somehow she makes me feel safe, loved, and cared for just by being around.

Then, BECCA came to see me. She just got back from Brazil on Thursday, and she brought me food that was edible!! And ginger tea, and cake. I love that girl, and I missed her a shit ton while she was gone. <3
Anyway. I'll keep ya'll updated on what's the dealio.

I interrupt my epic story for this announcement.

2010-06-25T23:03:00.002-05:00

In the hospital again.
A disaster.

On the phone my doctor sounded worried/concerned. When I got here, the interns downplayed my pain and made me sound stupid.

I pointed out my infected port, the reason I'm here and they respond with "oh, it doesn't look infected"
Wellll...excuuuuuse me.
It hurts.
I have a fever.
It's all red and won't draw blood.
There's SOMETHING wrong with it.

THENNN,
I had to get 70cc's of blood drawn for ridiculous amounts of lab work. More than I've ever seen while conscious. And that's a freaking lot.
The syringe was as thick and long as my forearm. Not exaggerating.
Soooo they thought it was a bright idea to try to get that much blood from my hand vein. Not a good idea, and it blew up right away. Then they suggested something I've never heard of. An IV in my fucking neck.
My jugular vein.
I thought they were joking!!
Then they pulled out a giant needle and it wasn't funny anymore.
The nurse held my hand as the doctor plunged the ginormous needle into my jugular. It hurt so bad I cried. The nurse held my hand. I felt like a kid.
Then, he missed, and had to dig around in my neck for 5 minutes.

"oh, it's not working."
And then he had to hold pressure on the wound so I didn't bleed out. And it felt like I was choking. Like he was choking me.

Then he tried again, in the other side of my neck. That one hurt, but not as bad, and he got it right away. Now everyone has left my room, and I feel lightheaded and tired from not eating all day coupled with having a shit ton of blood pulled directly from my neck.

And I'm mad. Because Ryan said he wanted to take me up here, but didn't want to hurt his back. So he went to a BBQ we had planned to go to together, alone tonight.
And that's fine, I understand. But when I texted him about my neck ordeal, all he wrote was "never heard of that before" and then I asked him to call me and he wrote "not now, still at the BBQ, will call later." and then I said "well I'm really upset and need to talk to you, so please call me soon".
And that was over an hour ago.

I'm sad.

And it goes on and on and on and on.

2010-06-19T01:50:00.002-05:00

I've decided to shorten these posts a bit. About my health.
So, you can have controlled bursts instead of acute poisoning.

Where did I leave off?
Oh yes, the first night in ICU.

I arrived at the hospital room (my family must have been there), and got settled into the first hospital bed I'd ever stayed in. It was a pretty nice room. The pediatric ICU had just been remodeled thanks to generous donations from 10 big businesses in town. The businesses each got to put a giant plaque above the sliding glass doors to the 10 intensive care rooms. Mine was Wal Mart. It was decorated in soft blues and whites. Low calming lighting shone from bubble lamps mounted on the wall, and the faint beeping seemed almost therapeutic.
It was 3 in the morning after I got settled in that first night. They started me on Digoxin (http://en.wikipedia.org/wiki/Digoxin) and gave me some medicine for the pain, probably morphine. I slept peacefully for the first time in weeks.

The next few days were pretty average, I got to talk to my 5th grade class on the phone and they were all jealous that I got whatever I wanted with the press of a button. Letters and pictures started pouring in from all over the country, from school, relatives, and random church-goers from all kinds of places, who'd heard about me through the grapevine of prayer lists. I hanged everything on my wall, and soon my room looked like an art gallery.
Word spreads fast.

I was starting to feel, cautiously, stable. The doctors and nurses took a liking to me and I started to feel comfortable instead of scared. I remember two nurses specifically, Michelle, and Angie. They were wonderful.
One day, a doctor brought in a portable computer on wheels, and sat down on my bed to actually tell me what was going on. He showed me pictures of my heart and explained what everything meant. He pressed my fingernails and showed me the difference in blood flow from his. He pointed to my weight loss and blue lips and sunken eyes. I understood, a little more, after that visit.

I was comfortable. It had been a week and I was even in a bit of a routine. Wake up, play Nintendo 64, watch a movie (Waterworld, over and over and over), drink jones soda my mom brought me, talk to lots of people on the phone, sleep, sleep, sleep, medicine. Just stuff.
One night, at 8, I started to feel funny. Doctors and nurses came running in screaming stuff, they were staring at the monitors behind me on the wall. They gave me the torture medicine again, trying to slow my heart, but to no avail. The last thing I remember before I passed out is straining my neck to look above my head at the monitor. My heart rate was climbing, and when I lost consciousness it hit 240 bpm. I had had a heart attack, at 11 years old.

Two days later when I woke up, my mom, my sister, my aunt and her husband, my dad and his new wife (my momma now, Amy) and other people were in the room with me. Amy momma was stroking my leg, and she smiled at me. My parents had to do an emergency conference with my team of doctor's to put urgent priority on my transplant status. At this point they were still trying to get me on the list, but time was running out.
During the conference, my mom had a nervous breakdown and embarrassed herself in front of all my doctors by starting a fight with my dad about the size of his new wife's ring. Wondering why he spent the money on it instead of child support. It was a big huge deal, that I occasionally still hear about to this day .

But whatever happened in that room, I was listed that day, as a status 1a, the worst of the worst and sickest amongst the sick. I didn't ever recuperate from that incident. I was so sick I couldn't get out of bed.
People started talking to me like I was already dead. Everyone cried around me. But I hadn't cried since that first night. I started to wonder if I would ever cry again. My aunt and her husband approached me one day, and the notoriously cold and detached "uncle", who had always yelled at me and was mean to my cousins, broke down and started crying...thanking me for saving his marriage. They realized what was important in life now.
My other aunt approached me after getting off the phone with my grandma in the corner of my room. "She just said she loves me...that's the first time she's ever said that to me, it's a miracle, and it's because of you".

It was all so overwhelming.
I was lucky enough to be alone one day, sitting up in bed, feeling depressed. Nurse Angie was giving me a sponge bath, and I started sobbing. She was startled at first, but regained her composure and asked what was wrong.
"I don't want to die!"
She embraced me and held me while we cried together. It was the first time I'd cried in two weeks, and definitely the first time I'd faced my mortality. I'm glad I wasn't alone that first time. What a good person that woman is.

That's all for today.

The life and times of... (very long post).

2010-06-18T01:16:00.003-05:00

I'm feeling a bit nuts right now.
Sometimes, for reasons unknown to me, I lose my train of thought. Not on just nothing staring into space. I actually go to a different place in my mind, a different time. Involved memories that make me re-live or re-witness something I had forgotten. Sometimes it's dreams from years ago that I'm suddenly thrust into while I'm reading a book. Sometimes it's a fight I had with a school mate in third grade that made me feel really bad. Today, it was the beginning of all my heart troubles that crept up on me while I sat playing a game on facebook. For about 10 minutes I blankly stared at the computer screen as I felt the same fear and frustration I did those 11 years ago.
I've never written the whole experience down before. Oh, I've tried many times, but the truth is it's incredibly tedious, involved and maybe a bit tragic for my taste. Anyway, my 12 year heartiversary is on the 30th of this month (holy shit!), so for those reasons and more, I'm going to account the whole thing here. Yay for you! And me, because this post traumatic shit sucks.

Where to begin? Well, perhaps you need a bit of a background. Where our story begins is in a small town, Central City, IA. Population is supposedly 1000+ but that's debatable. My family (which at the time consisted of my single mother, me, and my sister 3 years my junior) had just moved there from Lincoln, NE because my mom got a job offer working for an environmental company of some sort.

The year was 1999 and we lived in a trailer in the front yard of our soon-to-be home that was an old pole barn still being renovated. It was ginormous, and beautiful.
That fall I started 5th grade at my new school. I excelled and made many friends.
Looking back on everything through pictures, my family and I both see many signs that could have pointed to my illness. It's obvious that I was losing weight over the winter. I had always been a bit of a chunky kid, so when I started losing weight it was only looked at as fortunate. Growing into my new body.
When school started again after winter vacation, I actually felt fine. I was doing well in school.

In march, my weight loss became drastic. I remember standing on the scale in front of a friend from school, comparing. I weighed 90 lbs, at 11 years old. She called me a bitch because she was jealous.
I had been looking forward to April for months, we all had. It was roller skating month in P.E. where we set up the gym like a rink and skated with disco lights and cool music.

I remember the day like it was earlier this afternoon. The song was "kiss me" by sixpence none the richer. I was skating when this strange feeling started welling up in my diaphragm. I had no idea what it was. I thought it was painful, but couldn't be sure. It felt like someone was sitting on me. Crushing the breath out of me. "Kiss me, beneath the milky twilight" sang in the background as I collapsed on one on the giant wrestling mats lining the gym. It took me the rest of class to catch my breath and as soon as I stood up to walk back to homeroom, I was out of breath again, this time in pain.

I walked straight to the nurses station, but they just chalked it up to the rollerskating, saying I must have pulled a muscle. And I had no reason not to believe them.

The next few days it became increasingly hard to walk, even through the hallways to my classes. I wasn't eating at all, and was getting sick when I did eat.
At home, I kept up appearances, just assuming it would go away. When I went to bed, I had to sleep almost sitting up to keep the pain bearable.

One night, it was very late, and I still hadn't fallen asleep. I was laying in the dark, forcing the breath out of my lungs to test the strange wheezing sound they were emitting. What was causing it? When suddenly I needed to throw up.
I hate throwing up, and while screaming running to the bathroom, I woke up my mom. She came downstairs and held a washcloth to my head while I puked for half an hour straight. I was exhausted afterward, and she knocked me out with some NyQuil so I finally got some rest.

The next day I called her to my room to have her listen to my weird throat noises. She pressed her head to my chest and heard them too. I told her I just didn't feel well and that I'd like to go to the doctor.

Her next words will haunt her forever, because she feels guilty for saying them, and wonders if she should have done something different.
"It's probably just heartburn, you don't need to go to the doctor" But I insisted, and she complied, with an appointment a few days later.

THE FIRST APPOINTMENT
I didn't really care about doctors, ever. They didn't bother me, and I didn't care about them. That day was the first time I ever saw concern from a doctor. Usually they were so quick to reassure me or my mother that nothing was wrong. This time he looked scared, even.

Understand that the doctor's office in Central City was literally a 2 room facility. There were two examining rooms, and ancient equipment. The paintings on the wood paneling were of embroidered orange clowns. A very eerie memory.

He took me into a back room that, to my recollection, was just a table surrounded by antique ekg machines. Seriously, they (or IT, rather) took up the entire length of the wall and looked like one of those computers from the 50's.
He ran almost 2 hours of tests. The paper came out of the wall, feeding him information as he nodded and "mmmhmm"-ed. Then he said he couldn't help us and that we had to go to the university hospital an hour away in Iowa City as soon as possible. He would call them and let them know to expect me.

We (my mom, sister and me) went home, got ready, and left sometime in the evening. On the way to the hospital, we stopped at dairy queen and I got a blizzard, yum. Mint chocolate chip, if that tells you anything about the inherent lack of urgency.
We arrived at the hospital in what may well be the nick of time. As we walked the corridors, trying to find registration, I had to stop several times to catch my breath and deal with the pain.
When we reached registration, they didn't have us sign any papers or wait for an escort, sending us straight to the children's hospital side of the university hospital. A small detail I now realize to be amazing. It was imperative that I see the doctor's as soon as possible.
The walk to the second floor children's hospital was excruciating. I cried and puked and stopped every 10 feet. Yet I still thought they were going to tell me it was nothing, they were going to laugh and apologize for wasting our time.

I remember the room, room 15. We were showed in by a nurse and left to wait for doctor's to come. It was 8:00pm, and the person inhabiting the other side wasn't there. As I waited, I looked at her picture from my bed. I looked at her machines and notes. I marveled at the hospital room, never having been in one before. I laughed at the passive aggressive note she left on the door, telling everyone to leave her alone unless it was past 9 in the morning.

Then the doctor's came in next. They asked me what the pain felt like. I told them it felt like a terrible internal bruise, that someone was pressing on constantly. Also, that I felt like a giant person was standing on my chest. Compressing my breaths.
They explained they had no idea what was going on, but they would do tests to find out that night. Another notable miracle of sorts, usually you can't get tests done that late, the technicians mostly go home at night. But the actual doctor's were going to do the tests.

They wheeled in the hugest wheelchair ever. My sister whined that I was lucky that I got to ride in it, and I managed to smirk because I did feel quite doted upon. Every doctor in the place was paying attention to me, I didn't know it was a bad thing. I climbed into the monstrosity and sat sideways with my knees against one arm, and my back against the other. My family could only follow me to the door of the test, but had to wait in the room during it.

Inside the room, I laid bare chested on a hospital stretcher. The room was dimly lit and there were 5 or 6 doctors in there, leaning towards the ultrasound machine. My first Echocardiogram. There was some kind of delay, since the technicians were gone, they couldn't figure out how to get it unfrozen. I looked at the screen and after 15 minutes of debating whether to say anything, I pointed out that they forgot to enter my last name, and voila! It was the magic trick. I was applauded, and laughs were had at the irony of an 11 year old telling doctor's how stuff worked.

That was the only test they did. They sent me back to the room, where I detailed the story to my family. The lady in the next bed was there now. Sidney. I could tell she was used to hospitals, she was comfortable and the nurses all knew her and acted like she was family. I'll never forget that girl. Never. Later in my story she will reappear.

The doctor's piled in shortly after I was back in the room. They closed the curtain around us, and sat down next to me in chairs and even at the foot of the bed. "There's no easy way to say this, so we'll just say it. You have Heart Failure, Idiopathic Dilated Cardiomyopathy, you'll die without treatment, and probably without a transplant."
My mom started crying, which made me cry. I was really hoping it was nothing. Now it was everything.
They refused to give any kind of prognosis, and said I would be staying here for a while, if my family needed to regroup at home. They left a box of tissues and walked out.
We cried, and Sidney pulled back the curtain to say she heard everything and was really sorry it was happening.
The reprieve wasn't to last long. Next began the nightmare that continues to this day, to this moment.
I remember what was happening to me that night, but after the dreadful news, and the crying, I can't say what the hell happened to my family. Did they stay, did they leave? I don't remember.

I was taken to a room. This room, this exact room and it doesn't look any different than that night only there was no giant chicken:

On the outside it said "treatment room" and was informed they were going to try to do one thing before I was sent to intensive care. Just to see if a special medicine slowed my heart down. There was a small chance it could do some damage control.
The next half hour was some of the most painful, torturous moments of my life. It was my first IV, to begin with. It hurt and blood was everywhere. I was scared, and my family wasn't allowed in. I didn't know the doctors, but they were being kind. They held my hand and told me to try to relax.
This is actually really scary for me to write right now. I feel panicked, and I feel phantom pain and extremely anxious. I remember what the medicine felt like.
"Try to stay calm, you may feel some tightness, but you'll be okay, we're right here". It was this drug: http://www.drugs.com/pro/adenosine.html
And I got every side effect possible. It slows the heart immediately after injection, and when your heart goes directly from 160 beats a minute to 40 beats a minute, it's fucking painful. I screamed, and couldn't breath, my screams became muffled and sounded like extended grunts. My back arched and my muscles tensed, the doctors held my shoulders and feet down. I was allowed to rest in between dosages. I cried and asked them to stop, but they kept doing it. I was so exhausted. Finally they said "last one, and then you can go up to ICU". It was over, but I was scared for life from that experience in that fucking room.

The rest, dears, is for later.

In the worst way.

2010-06-14T23:42:00.002-05:00

Well...
Called doctor. Took three hours for them to call me back and say they are going to change my medications and see if that works.
What is frustrating about this is that they don't even know what is wrong. They haven't been able to catch this thing on a monitor or EKG, so how the fuck do they know what medicine can work?
I feel like they are throwing this medicine at me instead of being real doctors and figuring out the problem. Oh I am so fucking scared that they don't have my best interest at (no pun) heart. As long as I'm alive, they feel successful, but who the fuck cares about my quality of life, eh?
I told Ryan about it tonight. He just acted like "oh well, you have to do it, so get over it, buck up" and that pissed me off. He said "I'm not going to hold your hand and tell you something just to humor you".
I just wanted him to say "I understand that this sucks for you, I can understand how you might have to cut back on pool if the medicine effects your concentration and comprehension, and I'm sorry you have to deal with that." But no. He said "Not playing pool isn't the end of the world" and then made me feel guilty when I said it kinda was the end of the world by saying "well as long as I had someone worth spending time with, I wouldn't be that bothered by it"...insinuating that I didn't care about him enough to forget about my problems.
That was a tough conversation, because he doesn't understand that I deal with these problems alone usually. I silently accept (and have been for 12 years) what the consequences are of taking my medicine.
I learned the lesson early in my life : If you want to keep people around you, don't complain or talk about death and your health.
So I didn't, for a long time. It took me forever to tell even people I cared about like friends and roommates about my health. Even then I didn't talk about it all the time. I don't talk about it all the time to Ryan, either. But I'm starting to think I just shouldn't talk to him at all about it. Because I know how he'll react, and I know I'll get mad and upset about it.
Sigh.

On a side note, if I don't take this medication, and continue having heart rhythm problems, then they want to implant a permanent defibrillator in my heart, that will shock me every time I have a skipped beat. Which is a whole lot of fucking shocks a day. Arrrgh.

Anooyeeed.
Annnooyed.
Annnnnoooooyyyyannnnceeee.

And fighting sucks. I hate it I hate it I hate it.
and I'm really bad at it too.

Heart...ATTACK.

2010-06-10T02:50:00.002-05:00

It is 2:15 AM. This is the second night that I've had bad insomnia, and severe heart palpitations. Tonight the palpitations are worse than last night. They are very frequent and quite alarming.
However...I don't know what to do. I kind of think I should go to the emergency room but I am reluctant. I already know what will happen...they will shove an IV into my arm, pump me full of unnecessary fluids, and take chest xrays and an ekg that doesn't show anything wrong. They will only end up transferring me to St.Louis after conferring with my doctors and I will end up in the hospital for a few days, eventually leaving with no results.
Not to mention, I'm kind of scared that they will try to force the internal defibrillator on me again like I'm a customer buying the best washing machine. So that would mean surgery and a garish looking massive bump coming up from my sternum...which would really add to my beaming self confidence lately.
In the meantime, I will miss a visit from my cousin and a pool tournament/party tomorrow, and maybe even the awesome phone conference about my Hollaback startup on monday night. I will make everyone worry about me, most concerning Ryan because any change in my health makes him treat me like a child pariah.
Then there's the driving thing...I would have to wake up Kelsey and have her drive me to the emergency room where she would either have to stay all night (morning) or I would have to be stranded without a car. Then I would get to be all sad and depressed that Ryan couldn't take me (what with the g/f and all...).
Speaking of which, I'm already a bit pissed that this is happening and I can't call him to see what he thinks, or for him to calm me a bit, or for him to fucking come over here and hold me while my heart skips fucking beats.
I'm worried about it because right now its happening in a higher frequency than it has in a long time. I am also worried because I have had sudden death before, luckily in the hospital. It's a side effect of the IV medicine I'm on, but so are palpitations.
Fuck. I'll just go to bed.
Hopefully I'm still alive when I wake up. And if I start having them again tomorrow night, I promise I'll go to the ER. There's a compromise for you.

fuck

2010-05-29T18:04:00.003-05:00

I'm feeling terrible.
just horrible.

My best friend Emily is in town for just two days. It makes me sad that I can't see Ryan during these two days, because they don't get along.

She and Ben are going out to dinner for a few hours. I tried to ask Ryan if he wanted to meet up to see each other while they were out. He acts like I'm just bored without her around, and I'm just trying to occupy my time until she gets back so I ask him to hang out.
When really...really...really, I just want him to love me. I just want him to show his affection and want to be around me. He doesn't want to be around me.
It's all or nothing with him. Either I fucking spend ALL OF MY TIME WITH HIM, or else I don't spend any time with him. If I have 3 hours when we can hang out, that's not good enough.

It sucks so bad. I really really really want him to come over here...but not really in the same breath because I know that he'll just act nonchalant and not touch me and act like I don't matter to him and play fucking games. I don't want to play games anymore.
I'm so sick of having to lie to have some imaginary upper hand in the this weird fucking relationship.

He's told me he never will break up with his girlfriend, he'll never leave columbia, there is no chance for us to build our own story, only the chance (one in a million) for me to impose myself onto his already written life.
This is going nowhere. what the fuck is my problem. what the fuck is my deal.
Why the fuck am I putting myself through this.

I know what I could do to change it. I could pretend like I don't love him anymore. I could play games and pretend like I don't care that he never wants to touch me, that we only have sex maybe once a week, instead of every day, and that when we are intimate, it's to a fucking movie and he's watching it instead of me.

I could pretend that I don't cherish our time together. I could throw a childish fit about his girlfriend. i could play games...but I don't WANT TO.
i DON'T WANT TO
I don't want to don't want to don't want to .
fuck

Alls well that...begins...ends...shit.

2010-05-17T00:43:00.002-05:00

Today...day three in the hospital, was uneventful to say the most.
I sat in the chair for almost 8 hours straight. Watching extreme makeover home edition and Inuyasha. Hahaha.
I did find something interesting out, though.
There is another young woman in her 20's waiting for her second transplant, just a couple of rooms down from me.
She's been in the hospital for 5 months straight, since december.
She's depressed and has no interest in meeting me.
I understand...but find it unfortunate. It's so rare to meet other people my age going through a transplant at all, let alone their second one.
I know what it's like to be so sick that you don't want to see anyone anymore. She probably feels like she'll never get out of this hospital. It's like my feelings about columbia but magnified a thousand times. I was that sick the first time I needed a transplant, when I was 11.
I sometimes feel guilty for not being that sick now.

But I am not. And she is, and that sucks that she won't meet me. I know I could say something, anything, that could make her feel not so alone, or lonely.

I hope I can go home tomorrow.

<3 <3 <3

Here today, here tomorrow.

2010-05-15T23:22:00.002-05:00

I think...I will delete the negative posts about Ryan and I off of here. I feel...a bit guilty for posting my relationship problems for everyone to read about. It's not cool that I'm sharing personal information about another person with...well who know's who.
So...that aside, I feel that it's okay to speak about positive occurrences, because that's bragging, not berating. That's for my journal.

Anyway, here I am, night number two. Fuck I'm tired. During the day I sat around in the recliner, on the internet. Nothing of great importance happened after the xray this morning. They think I have some kind of virus. I hope it's not the one from the diva haus of doom. But oh well, I did all that I could, wearing a mask and eating off my own dishes. Sheesh.

Around noon, I was bored so I went to the nurses station. See...I'm still a bit used to the children's hospital. There, when I was bored I could go sit at the nurses station and gossip with the ladies, and sometimes even hear stories from the doctors about crazy illnesses and eat candy that they had stashed.
I approached the nurses station here at the adult hospital...cautiously. The moment someone saw me, they hurriedly asked what I needed. "Oh, nothing, just bored" she looked at me for a moment, then shrugged and looked back to her book.
A few more moments passed...
"whatcha reading?" I pointed at her book.
"Bible..." she said, closing the book so I could see the front.
"Ah haaaa..." I backed away.
Then I went back to my room.

Ryan got here at about 4:30 and it was wonderful to see him. I was going crazy with boredom!
He had just eaten but I needed to go do something, so I dared approach the nurses station once more, this time with Ryan in tow, to ask for permission to go to the cafeteria.

"oh, noooo. We can't let you leave the floor. The monitor doesn't pick up anywhere else"

A major difference between the adult and children's hospital...is the willingness to bend rules. Nurses brought me nail polish and cookies, or sneaked some soda from their lunch breaks to me. They gossiped about their lives and listened to me talk about mine. They were like nannies or really cool older sisters. Here...they're so strict. Following the book like zombies. Pro-to-col, pro-to-col. Everyone has a stick up their asses.

"oh, well...I won't tell anyone...I promise." I looked very sadly at the row of nurses sitting at an equally rigid row of computers.

"I'll be fast, too..." I promised with a smile.

AND TO MY UTTER AMAZEMENT...they looked around and said:
"Well...I guess if he's going with you. But you can't tell anyone that we let you go! And hurry back so we know you're safe!"

Hahahhaaaaaaaaaa! With an "Oh my gosh, I love you all!", I escaped to the elevators before they could change their minds.

When we got back to the floor, I leaned over the nurses station and said "I'm not back!!!"
"Rigggghhhht...because you never left!" They looked at me and smiled.

Ah...maybe there's hope for this place afterall.

Ryan stayed in my room the rest of the evening, and we played some rather hilarious games of rock paper scissors (though he can never seem to understand why rock beats scissors, he thinks its a draw). We played "name a country that starts with..." through the entire alphabet and had oodles of fun trying to think of an "O" and a "Y".
I could tell his back was feeling bad after all the driving over the last couple days.
I seriously love him so freakin much.

To whom it may concern...

2010-05-15T09:51:00.002-05:00

I am in the trenches (hospital) right now.
It's morning and I'm eating a banana. Yay.

I'm in here because my home nurse thought I had fluid in my lungs and my heart rate/rhythm was off. I think I'm fine. I feel okay. But it's better safe than sorry in these situations. You know? I'll probably be here until Tuesday.

I'm always dumbfounded by the apparent lack of giving a shit in this place. I must say, that the actual people have by far been nicer than any visit before. However, the root issues still remain the same.
How can I get better (if i were sick) when no one will let me rest or sleep?

I got here at 9 o'clock at night. The first thing after getting settled in was a blood draw. By a student. This wouldn't be a problem if I had flowing veins of glory, but alas I do not. I have stagnant veins of sludgy hatred. It pissed me off because it took almost an hour!! Didn't they realize it was 11 at night? Luckily Ryan was there. He looked me in the eye from the chair in the corner of the room. He was holding my gaze and gesturing for me to breathe and calm down.

I didn't fall asleep until 3 after all the blood draws and admitting hoopla.

330AM:: Wake up, your potassium was low in those blood tests. Take these giant pills!!!

4AM:::
Loud bang at the door and multiple "Ms. Coooook?" They flipped on all the lights in the room (which I'll never understand) and did an EKG. Little stickers all over my chest, cold, hold still. Sleepily and annoyed I asked why they had to do this so early in the morning. "It's just what we do". End of discussion!

6AM:: Wake up and meet your new nurse for the day. Pretend to give a shit that you have a new nurse. Whatever.

630AM:
Wake up!!! More potassium pills!!!

7AM::
HOUSEKEEPING!!! Proceed to make loud noises as you shake the EMPTY trash bags from their encases. Then hum while you mop the clean floor and spray smelly cleaner on the clean counter.

8AM: Food service! Here's a bunch of shit you can't eat since we didn't bother asking you what you'd like!

830AM:
Come on lets take a ride to the Xray land. hahaha. I'm just going to get out of bed now.

The food service lady came back a few minutes ago and wanted to know what I want for lunch: Roast beef or turkey?
I explained that I'm vegan and she said "well, we have a delicious turkey salad"...it went like this for a while until I eventually asked for her to just bring me some fruit and tea.

hahaha.

I'm not too bitter. Hahaha.

It's okay, there are bright sides to being here. People give me stuff if I push a button. I get my own room with a good view. I have cable and the internet. I'm not very sick, so I'm not puking or anything. And I'm not at home to catch the nasty stomach flu that's being passed amongst roommates!

And Ryan...shows me he loves me by being dedicated to my health even at the expense of his. I know how much it hurts his back to sit in the car for 2 hours (and 2 hours back) to the hospital. I know he really wanted to go to the Harley event today, and that he's giving it up to come be with me.
I could be mad that he left last night, and will leave tonight, to get home before his girlfriend gets suspicious...but I'm not. I'm appreciative of what he can give me, and what he does do for me.
I love that guy.

Wantonly... yep.

2010-05-11T23:31:00.003-05:00

I was...
Terribly worried for no reason.

I was nervous and woke up 2 hours early to get ready to leave for St.Louis to meet his friend.
I got ready in about 40 minutes, and spent the remainder of the time pacing and looking in the mirror a million times.
He got to my house a bit late, and it was raining. He hugged me and was in a cheerful mood.

When we finally got to the house, I was struck by the beauty of it.
(His friend is an architect, and was in town for an architect school reunion, he was staying with his other architect friend, who's house we were at).
It was a private drive up through a beautiful natural prairie, to a large house with many windows. There was a walking bridge over a beautiful creek leading to the front door, and beautiful tropical plants everywhere.

Before we got to the door, the owner of the house came out and said "Who is this beautiful woman you've brought with you!?" and came up to me and took my hand in both of his and said it was a pleasure to meet me. That was the owner of the house.
His friend came out next, and was equally happy to meet me, he seemed very at ease and completely genuine.

Once inside I went on a tour. It was gorgeous. There were floor to ceiling walls throughout the house and natural light came in through the huge skylights and vaulted ceilings. The back deck was ginormous and overlooked the river. It was like you were on a cliff, but it was the patio. The kitchen was huge. Then there's the greenhouse and garden. This man is in his late 60's and he has hobbies like cross-pollinating plants, collecting and caring for orchids, growing his own vegetables and limes in an orchard, doing semi-professional photography, making his own alcohol for (absolutely delicious) margarita's, and harvesting his own honey from the bee colony he keeps in his yard. Yup. Pretty awesome person.

The friend we were there to see was really funny and nice. He asked polite questions but nothing that was implying anything negative, like I had worried about. The first thing we did was go to the mall because the man's wife needed to get some gifts and luggage for people back in India. At the mall it was a bit like a sitcom.
The menfolk walked around behind us carrying things that the wife had picked out. They made jokes about how they don't understand shopping, and she and I made jokes about how men are all the same...hahaha. It was cheesy and stereotypical and fantastic!
Eventually we got to the jewelry at which point the men left to look at the "men's section" in macy's. That's when I came to know the woman a bit more. She's funny and kind. We were trying on earrings when they came back.
"You want that, I'll buy it for you" the man offered as I was taking off some (quite distasteful) earrings. "Oh no," I refused several times until he just put his hand up and said "I'm in a spending mood today, you don't say no to Indians, its just the way we are". So I said okay...but secretly wished he'd seen me trying on some earrings I'll actually wear.

We went back to the house, ate Indian food for lunch...and before the day was through I'd learned wonderful things about his and ryan's relationship. They act in much the same way. Same social graces and such.
Interesting.

Anyway, I got some cuttings from the home owner's rare tropical house plants and I'm very excited about that. Also, the recipe for jalapeno tequila.

At night we all went to a Greek restaurant and ate and talked. When it was time to go, the friend and wife hugged me and kissed my cheeks.

They liked me after all.

Wonderful!

On a side note, my partner was extra feisty tonight. He tried to start a totally unnecessary argument about Jew's being the cause of all the world's problems.
He doesn't believe this, of course, he was just saying it to get a rise out of me.
I didn't let it work. I mean, it pissed me off, but I could see through his attempts.
He did this all night. He kept calling the hobbits "fucking midgets" and "retarded" during lord of the rings.
It's like what I used to do when I was 14 to make people mad in class. Taunt them.
"Oh, suzie christian (random name), I fucked jesus and had an abortion from it!"
That kind of stuff.

What an immature thing to do. Not to mention annoying. But for some reason I see it, and recognize it, and I accept it.
Not what he was saying, but what he was doing. Trying to get attention from me. I'm not the only one who's fucked up about attention.
Silly boy.

On the up and up...but you know what that means...

2010-05-10T08:17:00.002-05:00

Last night, though a bit tumultuous and cautious...He and I didn't fight. We'd been doing well for a few days (see below) but then Friday and Saturday we got into it pretty frequently/exhaustively. His friend is in St.Louis from the middle east for about a week and he planned to go up there today to see/spend time with him.

Last night, when he was about to leave, he said he'd like me to go with him to meet his friend.

That's really awesome, because I cannot meet any of his really close (childhood/school) friends or family because of his girlfriend. Though, this particular person is "in the know". He say's it's okay because this man is "a cool guy" meaning, I assume, that he won't judge him for his decision to date me on the side.
What he doesn't understand is that this man will most likely judge me.
And therein lies my predicament this morning.
I am excited to be invited into this part of him I've never experienced...but anxious at the same time, about how to act around a man and his wife in their early 40's from the middle east.
Will they be freaked out by my piercings and tattoos? Will they wonder why the hell he is with an alternative looking 22 year old? Will they wonder if I'm only with him for money, or something like that?
Will they ask about his girlfriend?

I know for sure that I'll be keeping my mouth shut and only speak when someone asks me something. Because this is all very confusing for me.

Like last week when we were at the bar and his neighborhood friends came up. When he introduced me they said hello, but then they exchanged glances and ignored me for the most part after that.
They looked disgusted any time I tried to speak and they definitely didn't say goodbye or nice to meet you when they got up to leave.

I don't know why I care what these people think...I guess because it solidifies/exacerbates what guilt I already feel for being a mistress of sorts.
I need their approval in order to not judge myself too harshly.

Or I thought I did...but now we'll see.
He loves me and wants me to meet his friends. I am a good person and I love him and care about him...if his friend can overlook that in order to pass judgment on me, then fuck him.

Sighhhhhhhhhsigh sigh.

2010-05-09T01:36:00.003-05:00

I feel...
Failure.
Just utter and total failure.
At life, at relationships, at communication, and neediness and love and pool.
At everything.

Tonight Ryan and I got into an argument because of the sex thing...or lack thereof.
I tried calmly and politely bringing it up to him. He got really mad and said that there's just a lot on his mind lately.
"If you want me to just get an erection and fuck you, fine I can do that, but I like for my mind to be into it."
Okay... "That's good, I'm glad to hear you finally acknowledge it. You haven't talked about this at all to me. I awkwardly try to have sex with you and end up feeling like a fumbling fool when you turn me down without any explanation at all!"
Then he said "I just thought you understood what I was going through. You say you understand what's going on with my health, but then shit like this comes up..."

And I feel guilty for that. I feel guilty for the natural way my brain works. I wish I wasn't so insecure, I really really really really really do. It would make my life sooooo much easier. But for now, that's not the case...so I tell Ryan what I need from him, and he shoots down the suggestion.

"I'm not going to make a fucking speech anytime I don't feel like having sex"
When I asked him to maybe say something like "I'm just not in the mood tonight, it's not you." Or something to that effect, anything.

FUUUUUUUUUUUUUCCCCCCCCCCKKKKKKKK.

I feel broken, dysfunctional, unfit, raw, incompetent, inept. Blah.

I am trying not to judge myself unfairly...but it's really hard when it seems like if I could just grow up, mature, and become chill and relaxed with myself and everything around me, then it would all be okay. It's hard not to judge myself when my partner makes it seem like everything that is a problem in our relationship is because of the way I handle things. My attitude, my speaking without thinking.
I mean, yes...he does equate a lot of what's going on to his new disability and says that initially makes him cranky...but that it's exacerbated by my dealing with it. It's made worse by the way I constantly nag (his word) him to talk about his feelings...like some comic strip/sitcom joke about stereotypical women...always talking when they're not invited to.
He says it's made worse by my harassing (his word) him and putting pressure on him if I bring up something that bothers me.

So I come, naturally I believe, to the conclusions that I should keep quiet, lest I ruin the calmness of the water between us.
If he's snippy with me or says something mean...it's just his disability and if I actually understand and support him, I'll just take it with a grain of salt and not point out that he's being rude.
I can never express any kind of dissatisfaction with the way things are handled/going in our relationship because that puts too much extra pressure on him.

I feel sometimes...and this will sound really bad...like this is a contest to see who can hold out the longest. We are proving to each other what we're willing to take from the other person (I:E What things the other person does that bothers us or that we don't like) before we can't take it anymore. Whoever talks about what's wrong first, loses!!! Whoever takes it in silence without talking about anything, ever...wins! So I always lose, and he always wins...and that's where more manipulation on my part comes in.

We were at the store and he was mad at me for something, so he was walking faster than me, ignoring me, mumbling when he did decide to speak to me. I just decided to act the same way...not smiling, speaking monotonously, acting bored and sad.
He called me out immediately asking why I was being pissy and telling me that my attitude only made his anger/annoyance worse.
Woo hoo.

Shit...I should have kept my mouth shut tonight about the sex thing. I should have gone on wondering why he never wants to touch me, I should have just taken that as the new way our relationship is, instead of "thinking about the past so much" like Ryan responded.
I should have kept my mouth shut because now, in addition to thinking about being attractive, dreading being shot down if I initiate intimacy, and having aching for physical touch from him...I also now have to wonder if when we do have sex, he's just doing it even if his minds not in the right place. I have to worry that I've pressured him to just "get an erection and fuck" me.
YAY!!!!!

sheesh.

I'm a mess of a machine

2010-05-08T00:34:00.003-05:00

I think...I'm a complicated person. I might be impossible to please. Maybe.
I know that I need affection from Ryan more than he's willing to give me (anymore). I also know that I used to have a partner who smothered me with physical affection and was always needing hugs and shit (probably how I come across to Ryan) and it made me loathe him. I actually grew to resent physical contact with him because he wanted it so much I felt obligated, not invited.
Also, I have certain people that I hate touching, and certain times I don't like to be touched. Surprisingly enough, I hate physical contact from almost anyone, ever. Truth be told I hate hugs, and I hate it even more when they awkwardly last longer than I want them to. I also hate handshakes and random brushes with strangers in the elevator (or wherever). That makes me sound mean...but it's just my personal space that feels invaded at certain times.
I don't know.
That's why it's tricky. I don't know why I want so much mushy physical intimacy with Ryan...although I do suspect that my need/want for it is part of the reason I am not getting it, and that's a sticky situation.
I can't help getting fucking annoyed that our sex and touching is based around his advances, or his acceptance of mine.
I can't help getting annoyed that he can't just say "I'm not feeling very physical right now, it's not that I'm not attracted to you (maybe he could even throw in a compliment, ha ha) I'm just feeling like not being touched." Or "Can we just hold hands or can you just lay on my legs, because my neck/back/head/etc doesn't feel well and I can't touch you the way you'd like since it makes it worse?"
Seriously. Maybe that's the main issue for me...like all my problems with Ryan...it's a communication error.
If he would just vocalize what he was thinking, I wouldn't have to fill in the blanks!
He doesn't seem to want to have sex very much lately = He's having sex with his girlfriend I'm ugly I don't please him I'm not as good at head as I thought I was he hates me he wants to break up I'm going to break up with him first I need to get new clothes to look nicer oh my god I'm unattractive I need to lose weight fuuuuuckkk!!!

Simple thoughts become monsters if they live in my mind for a while.

In therapy, I'm working on not agitating situations with Ryan in order to force them to escalate, thereby coercing him to get angry and emotional (which I perceive as intimacy). This is (usually) a subconscious and unintentional occurrence based around my intense fear of abandonment (sounds fancy, huh?).
Sooooo tonight, I asked him to put his hand on me while I was laying on his legs and he rolled his eyes and sighed and jerked his hand towards me like a child being forced to take out the trash. I said "well I wouldn't want you to feel forced or anything!" And he got mad and said "jesus christ" and threw his hands up in defeat (as if to say what do you want?! I'm trying to touch you and now you act like you don't want me to???)
I just sat up and laid on my own pillow. Then he huffed and sat up. I said "what, now you're leaving?"
He said "yeah, it's getting late" in a monotone voice.

Then he got all his stuff together, and was ready to leave, and he came to hug me goodnight like always and I just said bye without a hug.
I guess subconsciously I was thinking "we'll see how he likes it, not getting a hug when he wants one"
But I guess he didn't want one that bad because he said, "oh, okay then". And left angry.

NOW...this is the part I've been talking about it therapy. Don't manipulate the situation and drag it out so he stays and you get into an argument and have a panic attack...
I let him walk out the door and...
Then I got up, tripped over some dishes and ran out the door to catch him before he got to his car.
It was cold, and he said "It's not worth fighting over, so goodnight"
Then I said...
"oh, it's not worth it?" See there, I was trying to fight about something entirely aside from my main point since he wasn't showing interest in arguing about that.
That's fucked up that I do that.
Eventually we just said bye...and that's a good step for me. I let go without going too far. I didn't cry...until he left and I came in here (my room) and started feeling sorry for myself that I am alone and don't get enough physical intimacy, and wah wah wah but as soon as I get it I don't want it and oh man I'm kinda fucked up.

But...
I realize that, and honestly, truly, I am giving a very good effort at trying to change it. Seriously. I don't like being fucked up.

There's something to be said about that.

2010-05-06T23:55:00.003-05:00

I am having a pretty positive day/night.
Ryan's friend is in St.Louis for a few days from the United Arab Emirates, so I am trying to practice trust and acceptance instead of worry, jealousy and maybe even attention hogging. Surprisingly, I'm not having any trouble with it. Occasionally a thought will pop into my mind. I'll start to get angry at the thought of him lying to me so he can go to St.Louis and party or something totally unfounded like that...and I just smash it. I don't give it any power by not thinking about it.
It seems to be working. I come at it from a point of:
"I love Ryan, and when you love someone, you want them to be happy and content no matter what that entails (unless it hurts you). Even if that means doing something alone, without you. Or participating in something you don't understand or wouldn't do yourself." Repeating this thought over and over to myself keeps me feeling calm and content.
Also, I think about how my relationships are with my friends. A friend tells me they are going to do something alone and I am happy for them. I don't question why they aren't including me immediately. I don't get (too) jealous if they spend a bit of time with me, and a bit of time with other people. Hahaha. Ryan is one of my best friends, so what the fuck is the difference? Sex? Commitment? I think it's the level of vulnerability...but I don't know for sure. It's a tricky thing, love.
Anyway...ramble ramble.

We've been having a really stable calm couple of days.
And it's so refreshing.
He's on his way home right now, but he said he'll stop by before he goes back to his house.
Yay! I really hope he's secretly told his girlfriend that he's staying in St.Louis, and he'll stay the night with me but I know that's not going to happen because he doesn't like lying any more than he has to. Which is another story entirely...for another time.

Tonight was pool league at Mo River in Millersburg. I was practicing really shitty for the first hour or so. Then I took a two hour break and practiced some on the 9ft tables. I was shooting really well. I was put up against a woman, which always makes me nervous simply because I'm not used to playing other ladies. Also, she's ranked a 4 so she's a pretty good player. That always makes me step up my game and play better. Also, it makes me shaky and nervous.
I had to win 2 and she had to win 3 games. She won the first two, and then I got my head out of my ass and won the third game. The last game (her 3rd, my 2nd) was going really well...I ran 6 out of 7 balls, but then got stuck behind one of her balls and the 8 ball. I thought I could squeeze past them, but I shot really sloppily and didn't take my time.
I knocked the 8 ball in, game(s) over.
I hate losing that way, because it's not legitimate. It's the equivalent of fumbling the ball when you're in the end zone. Or tripping between 3rd base and home on the game point.
Just plain dumb mistake.
It's so frustrating because I dedicate 20+ hours a week to studying and practicing this sport. I spend so much money, too. I understand it takes time to get better but progress is so tedious!!! I'm used to being good immediately at everything I do! I'm used to not having to try very hard and getting what I want (that sounds egotistical...but hey) anyway!

But yeah...i'm getting better. So take it with a grain of salt.

But other than that. Pretty good times.

Buah.

Dream world envelopes girl's waking life.

2010-05-06T12:23:00.005-05:00

Last night I had another intense dream. I was an abused child who was kept in an abandoned swimming pool, where the walls were too steep and slippery for me to escape. One day a polar bear appeared and the pool started to fill with water.
We swam and played together. There were very convincing feelings of friendship and love between us.
Because the pool had filled, I was able to leave. I came back to visit everyday after school, where we would swim and wrestle together.
One day, I got to the entrance to the pool and there was a group of young men from my school. Bullies that made fun of me in the classroom.
I ran past them because I already knew what they had done. They wanted to make me miserable. They wanted to take the only good thing in my life away from me.
When I got to the pool it was empty again. There was dark green algae creeping up the walls, and brown sludge in the bottom. The snow covered ground around the pool was splattered with blood, and a definitive dragging trail led to a messy lump laying about 15 ft from the pool.
It was the polar bear.
I often feel really overwhelming emotions in my dreams...but this...was utter despair. I cried hysterically, laying in the snow with blood all over me. Wrapping my arms around something that used to be an animal, that used to be my friend.
I woke up crying, at 3 in the morning, alone, sad. I cried all the way to the bathroom, and tears were still running down my face as I got some water and slumped back to my room. I finally felt a little better and fell back asleep around 4, just in time for the next dream.

In this one, I had some kind of hidden information that this mystic shaman lady needed from me. She invited me into her home, and I followed. It was dimly lit with candles burning, and incense smoke billowing everywhere. I walked behind her into a small room with a claw-foot bathtub that had a metal grill fashioned over it (just bars set across the tub so you couldn't get in it, but had to lay on top of it). She motioned for me to lay down. Once I was settled, she purified me with some kind of smoke. "Close your eyes" she said, and I did. She proceeded to hypnotize me. I was aware of what was going on, but it was like I was possessed, and my actions were not my own. She was talking at my body, but not with me, having a discussion with someone else. I suddenly felt prickly and my back arched violently. A bright light poured out of my mouth into the surrounding room. It was blinding and slightly blue. The woman sat still for a while, then clapped.
That's when I woke up this morning. I looked up the animal symbolism of a polar bear. It means the ability to navigate along the earth’s magnetic lines , introspection, ability to find sustenance in barren landscapes, purity of spirit, strength in the face of adversity, solitude, finding ones way back from the brink, communication with Spirit, dreams, death and rebirth, transformation, creature of dreams, shamans, mystics and visionaries, defense and revenge.

A bit shaken from the nights events.
And still with a looming feeling of sorrow and mourning.

Yeah, yeah, yeah...you have really nice tits.

2010-05-06T00:06:00.005-05:00

Tonight is Cinco De Mayo. And while I don't really know why I'm celebrating it, I went out tonight with Ryan. It was really nice. We had a good time and it was good to get out of the house for a while. The only downside was when a couple came from his neighborhood and said something about his new car "because your girlfriend couldn't be driving that mustang so why is it in the driveway?" It made me feel uncomfortable because when I asked him if they knew about Kelly, he said "yeah, but it doesn't matter" Like he'd introduced them to other ladies and they didn't care.
Oh, okay. So I'm just another skank you're fucking behind your girlfriend's back? That made me feel bad, but they didn't stay long and I chose not to let it ruin my night and to instead, bring it up later. Tomorrow or soon thereafter.

Other than that, there was a guy at the bar who is Ryan's friend. Ryan says this man is "racist, but still a good guy." I disagree with that statement. I was talking and the man said "yeah, yeah yeah...you have really nice tits." Now what the fuck was I supposed to say to that? Ryan just laughed so I felt no other option but to laugh. I didn't want to ruin the happy fun mood by getting angry at a "compliment".
It was annoying.

However weird/awkward the night was, between Ryan and I it was positive. We left the bar at 10 PM and went to Hy-Vee for some food. He pushed me around in one of those kid buggies, that look like a fire truck. Some lady said "you need to get out of there right now!" she was old and bitter. Then some guy who was stocking said "that's against store policy" But he never stopped stocking or laughing, so we didn't take it seriously.
Hahaha that was awesome tonight.

A step back for a moment.

2010-05-04T00:26:00.005-05:00

POSITIVITY!!!
(Mostly)
Ryan showed his love for me today by accompanying me to St.Louis to sit with me for 4 hours while I got my monthly chemo treatment. It means a lot to me when he shows his affection and care for me like this. It's a big deal because his back pain is made worse by staying in one place for too long (like in the car, waiting room, hospital room). After everything that's happened this past two weeks, I can say that it's really nice to have his support when it matters most.
Not to mention the money it saves me when he drives and won't take money for gas.
When we got back to town he bought me a skillet, bowl, and plate so I don't have to use the community dishes (my immune system being weak, and I'm worried about getting sick).
Sometimes I feel really stupid for complaining so much.
I feel guilty for not just taking it more lightly or relaxing and not letting things bother me so much. Guilty for expecting too much out of people, and setting myself up to get disappointed instead of taking things for what they are so I can appreciate the good parts of life instead of hating the bad parts.
Just a thought.

In the meantime though... for fucks sake I want an apartment/house of my own. I am so fucking tired of living with 8 other people (and guests constantly...the house is usually never occupied by less than 10 people)! Even though I know I would get bored by myself, I really would rather live alone than in a community house anymore.

Buah.

I feel okay after treatment, except a bit of a headache and some extra swelling (water weight) on my hands and abdomen. That's easy to take care of, though.

So goodnight, positivity and appreciation.
I'm glad you decided to visit...don't stay away so long next time.

<3 Luci

And you knew it wasn't true, but you agreed anyway.

2010-04-28T01:06:00.005-05:00

...tomorrow, when we talk about it again, he'll say that it was just my attitude that made him say that. He'll say it was just the way I act like I know everything, that it's my fault he got angry. And I'll see his side of the story and forget that he's not seeing mine, and then I'll agree to try to change something about myself so that we can communicate better when really, really, the fact is we will never ever communicate effectively because he will never be held accountable for the things he does that are wrong. He will always blame me...

Pretty much more or less exactly how it went tonight. Plus a panic attack when he said he was going home early. I freaked out at the thought that he would rather go home and lay on the uncomfortable bedroom floor while listening to his estranged girlfriend breathe while she sleeps in what used to be their bed...than spend another moment with me.
And the thought made me start hyperventilating, then I started feeling like a child and an idiot who couldn't control her emotions (anymore) and I freaked out even more. Then I felt guilty because he ripped his tennis shoes off and said "jesus fucking christ" and I just knew he was thinking I'm a weak, annoying, immature, manipulative bitch. So then I cried even harder for making him feel that way (if he was, indeed feeling that way).

Anyway...I made him mad, so that's why he told me to shut the fuck up. I was having an attitude. Because I told him "I am not in control of what YOU say...I refuse to take responsibility for YOUR choice of words." he rebutted by accusing me of always defending my actions, making excuses, and retracing my steps to make myself look better. Oh, also...when he was making me feel threatened by pointing at my face and standing closely over me, and I responded by disarming his threat...he says I was trying to get him to hurt me physically.
"I would never raise my hands to you, you fucking know that! So it was almost like you were egging me on, wanting me to do something to you"
Oh...okay...I thought I was stomping his threat to the ground, not inviting more.
I know he would never hit me...that's why it's so jarring and scary when his body language is so threatening. I know that's how he intends it to be, too...but according to him, I don't know what I'm talking about.

Tonight's argument was about my best friend coming into town for a week next month. I told him I was going to St.Louis to visit her for a couple of days. He got mad because I "Told" him instead of "Informing" him. He wants me to phrase it as "Do you mind if I..." But I tried to explain to him that's misleading because I don't care if he minds or not...I'm going to St.Louis so I thought I'd let him know.
Well now I'm selfish and I don't take his feelings into consideration.
Also...because my friend is coming here, I told him I'd probably be spending a couple nights hanging out with her (They don't like each other so I assumed he wouldn't be involved...and he said he was like "why can't you hang out during the day?" What the fuck??? What the fuck??? What. The. Fuck.

My face itches.

THENNNNNN he said that because I stereotype cops (as ruthless, douchebag ass wipe morons who are power-hungry and fucked up), I have no place getting mad at his friends for stereotyping women or minorities in front of me. Okay...that makes sense. Dumbass.

ANyway...

I've realized that this blog has started being about MY RELATIONSHIP instead of MY HEART HEALTH.
For that, I apologize to you and to myself.
I am giving way too much power to this shit...and not enough towards my well-being.
Well...my heart is okay right now. A bit tired after tonight.

Please tell me I'm a good person. Tell me I'm not selfish or stupid or fucking ignorant and immature. Tell me I'm wanted and beautiful. Tell me I'm worthy of being touched...tell me I'm not crazy for needing physical affection as complement to verbal affection. Tell me I'm not pissing you off by staying with my partner because I'm weak and just roll over and take it. Tell me something positive and wonderful.
Please.

I am the result of things better left unsaid.

2010-04-27T00:43:00.005-05:00

From diary: December 2004...15 YEARS OLD:

""Do you really want to know why I am so fucking mental right now? Because it really is all my fault. If I would have stayed with Josh instead of giving up on him, he wouldn't be so fucked up on drugs trying to make his life better. If I hadn't met Michelle, she would still be going to church, not with peter, not cutting. Tess would be here, where she belongs intstead of doing drugs in Fairgrove, if I hadn't told her to fuck her parents and start doing drugs with me...now she tells me she snorted "the best goddamn cocaine" last night because she thinks it will make me love her the way she wants me to. I want to die sometimes, you know...just die.""

I got the prescription today. Not the prescription I wanted, but one that will work nonetheless. Because how do I tell my doctor that I've built up a tolerance to these medications so much that a normal dose does little to effect me these days? Is 20 pills enough...well, yes, hypothetically. Nothing much I can do...because I can't tell her it's for panic and emotional pain, not physical pain. I can't tell her that it makes me not care, and I need more than 20 pills.

My baby sister surprised me today, coming into my room at about 11 this morning. It was such a wonderful beginning to my day! She's 20 years old, and we're very close. She's thinking about moving here, in which case I can get the fuck out of this stupid house.
I'm happy she's here because I get to spend time with her. Time I didn't take advantage of when we were in high school, but now miss dearly.
That's how it goes I suppose...

Tonight there was something happening across the street from my house. There was a group of people walking, and a cop stopped and said something out his window at them. I don't know what was said, but the cop parked his car on the street and got out and started yelling at the people. Then he grabbed one of them and made him put his hands on the hood. The rest of the people started crowding around the cop, and he freaked out and pulled out his pepper spray, then he called for backup. He turned back to the guy on the hood and slammed his head down twice into the car. The people started screaming at him and just as that happened, 5 (yes...FIVE) other cop cars pulled up and one guy came running (quite over-zealously if I may interject)at the group with his fucking taser pointed at them all. Well they cuffed the man and put him in the car and proceeded to fuck with the group of people.

During this time I made comments like "what the fuck!? Why is he pulling out his taser? Those people didn't even do anything" And my partner got very angry and said "What the hell do you know? You don't know if those people did something! You just think automatically that the cops are wrong!"
Well, yeah...one goes by one's experiences. And the fucking obvious display in front of us!
I said "Yeah, well no matter what he did, there doesn't need to be a cop hitting his face into the hood of the car. There doesn't need to be excessive force, this much backup, or fucking tasers. Tasers can kill people!"
Then he said "Shut the fuck up."

See...he's been saying this a whole lot lately. It was okay at first, because we give each other shit all the time, I call him dumbass, or idiot, and he calls me a jackass. Whatever, that's fine. I like joking like that...it's followed by a laugh or a kiss, or something to acknowledge it's just mutual shit-giving. But not recently. He's been saying shut the fuck up seriously. When I am talking, or when I am disagreeing with him, like here. Well I got mad.

"Don't fucking tell me to shut up!" He then pointed his finger really close to my face and said "You don't even fucking know what's going on! You just think you know everything." I slapped his hand away and said "Don't point your finger at me, and don't tell me to shut the fuck up. It's mean and it hurts my feelings. Show some respect." This was all in front of my sister, and at that point she went outside to get a closer look at what was going on outside.

"Just because you disagree with someone doesn't mean you can tell them to shut up." I said to him. "Well you shouldn't give me so much attitude."
"I AM NOT YOUR CHILD! I AM YOUR PARTNER! I shouldn't have to worry about the TONE OF VOICE I use when I'm telling you not to tell me to shut the fuck up!"
Then he stood really close to me (he's taller than me so he was looking down on me) and said something I don't remember. I moved away from him and said "are you trying to intimidate me right now? Because I'm not fucking scared of you"
Oh... he didn't know what to say about that. "What the hell are you talking about?"
And he sat down on the couch. I sat down, too.
I tried saying it nicer and calmer, again... "It's just a matter of respect, I would never, ever tell you to shut the fuck up because I love and respect you."
"Yeah, okay" he said facetiously as he nodded excessively and mockingly with a fake exaggerated smile.
"Don't ever tell me to shut the fuck up ever again."
He said "Don't fucking tell me what I can and cannot say" with a very serious angry face.

"DON'T EVER TELL ME TO SHUT THE FUCK UP EVER AGAIN."

Then he said "Shut the fuck up."

Wonderful.
Wonderful.
Wonderful.

And what's so upsetting is that tomorrow, when we talk about it again, he'll say that it was just my attitude that made him say that. He'll say it was just the way I act like I know everything, that it's my fault he got angry. And I'll see his side of the story and forget that he's not seeing mine, and then I'll agree to try to change something about myself so that we can communicate better when really, really, the fact is we will never ever communicate effectively because he will never be held accountable for the things he does that are wrong. He will always blame me until eventually I'll just stop having opinions, thoughts, or conversations. Just like the girlfriend he already has.
FUck fuck fuck.

fuck.

That was a really long post. These medicines have the effect of "rambling" on me.

Anyway....the cops let that guy go. Then, (perhaps it was a bit out of line) I said "wow, he didn't do anything!!! Imagine that!!! The cops used excessive force and almost tasered someone that didn't even do anything!!! Cops are so cool and fair!"

hahaha...
Geez.

Lost in a sea of everything and nothing.

2010-04-23T01:27:00.002-05:00

From APRIL 14TH 2004...age 15.

I wanna go home. I hate it here. If there is a such thing as hell I DO imagine that this is it. I dont like falling asleep to the screams of babys in pain, nor the sound of shit beeping in my ear...I havent eaten in 6 days...havent sat up in a few either. My back is going to fall off. Yes, yes it is. I think you forget what pain is after not having a visit from it in a while.

I want it to be over.

pain is hard to ignore. And its like a dungeon here. The blinds are closed...I am like in the ghetto part of the hospital. At least in intensive care, they tried to make my life worth living. I beeped for like, an hour last night before someone came to help. I am not going to lie...I feel like the doctors dont know what they are doing. I feel more and more like this life is a big joke. Whoever makes the most money. There are a few awesome people here though, who make a difference, because if i had to be here all the time I would shoot myself. But on a lighter note...aggg..there is no lighter note. See ya later.

I think I have intimacy problems. I need a lot of it, but I don't know how to get it. I try to have sex even if I don't really feel like it because it makes me feel close to him. I try to instigate arguments (whether unintentional or not) so he stays longer, so he fights with me and proves his love by getting upset. I confuse intensity with intimacy and it's making me a hollowed out, sad sad version of myself.
I have an appointment on monday to get another prescription for pain meds. My headaches and panic are a constant these days. What's wrong with me?

My friend, cry for me. I am but an unborn catastrophe.

2010-04-21T00:40:00.006-05:00

hmmmm...where to start today. I suppose I'll start by saying that I'm getting sick I think... Since those panic attacks, I've felt like shit. I think I stressed my heart out a bit too much. I had my heart rate at about 180 for all together, about 40 minutes. I think I might have damaged it more, or weakened it at least.
About 2 years ago, when I was first put on the transplant list, I felt so sick. I was emaciated and weighed 30lbs less than I do now. I was weak and tired and unhealthy.
Since last Thursday, I've felt like that again. Everything I eat makes me feel nauseous, and I'm full all the time. I feel sluggish and tired. My blood pressure is all kinds of funky and even bending over to play pool is making me feel lightheaded.
Egh. What to do.

The good (?) news is that at my parents, I recovered several old journals. I shall now be sharing a tidbit of my choosing in every post from now on.
Hahaha.

From October, 2004, age 15:

Hey,
The other day, Mr.Yates (the principal) called me into his office to talk about the kind of music I listen to. He says it isn't appropriate for school...and for that matter it's not appropriate out of school, either. He then proceeded to give me a lecture (He actually "searched" my locker and listened to a CD Melissa gave me, and the one song he listened to was "Heretic Anthem" by Slipknot) He went on and on about how it said in the song, "I wanna be a sinner" Blah blah fuckity blah. Fuck him...he was like "you know that's worse than KISS?!". Then he said that I wonder why no ones parents will let their kids come over to me house. He said that he was very disappointed in me and that he hoped that in the future, I would remember that conversation and realize he was right.

I still think he's a fucking douchebag, and he was definitely wrong.

Breathing too fast, not breathing at all.

2010-04-16T02:17:00.002-05:00

tonight...

I had 3 or 4 panic attacks.
We were fighting again, like most nights, only tonight was much much worse.
After what happened last night...him just leaving when I wasn't done talking...I wasn't really feeling that happy to see him this afternoon.
I tried to explain to him that it hurt my feelings when he just became completely silent while I was trying to have a conversation with him.
I told him how it makes me feel very squashed, and like I'm just being annoying and talking too much.

Instead of talking like a normal human being to me, he had to start fighting. He told me I was harassing him and that I needed to let it go. I said I couldn't let it go until I got what I needed from the conversation.
Then somehow he got so pissed off that he said he wasn't going to take me to league. That's when I had my first panic attack. I felt out of control of the situation and I felt responsible for ruining his night simply by trying to ask him for something he wasn't giving me.

I freaked out.

When i have panic attacks around him, he doesn't stop the fight. He takes the time when I can't speak because I'm hyperventilating, to say mean shit that makes the attack even worse.
He's never even skipped a beat to ask what he can do to help me calm down. He's never thought "hey, even though we're fighting, I should put my anger on hold to help her calm down". Nothing. And then I start thinking about that and it makes the panic attack even worse. Eghk.

The second attack came when I finally calmed myself down from the first one. Somehow we were fighting again, and he said he suddenly doesn't give a shit about my family, and that he doesn't want to go to visit them this weekend because there's "too much drama surrounding it". Even though this has been the plan for over a week.

I freaked out.

I started uncontrollably breathing very quickly, and I felt silly for behaving like (what I thought was like) a child, and therefore started freaking out more. I felt extremely guilty for ruining "everything" and I couldn't calm down.
I finally had to take 2 Vicodin to prevent passing out...even though I'm allergic to vicodin and I get a really ugly rash from it. I still took it.

Eventually he was so mad that he started just saying mean shit for the hell of it.
I found out that he values his home and other material posessions/money so much (he would lose it if anything happened to his relationship because his girlfriend co-owns it) that he doesn't know for sure if he can be with me before my transplant. Seriously?
He seriously might not be able to drive me to MAJOR LIFE THREATENING surgery...because he might have to lie to his girlfriend. That put a whole new twist on everything.

I left our fight with this conclusion/s:

1.) I should never tell him if something is bothering me because he has no intention to speak with me about it.
2.) Should I choose to tell him something that's bothering me, it needs to be a concise statement, or else I'm "harassing" him with too much information.
3.) My opinion is shit.
4.) I don't have a support system for after my transplant.
5.) I will have a very disgusting rash on my hands tomorrow.

All in all...
A very very bad evening. Especially for my heart. The proverbial one.

defeated but not done yet

2010-04-15T01:16:00.003-05:00

Tonight was...annoying.
He left mad. Without a kiss or a hug. Without a smile.
Probably because we spent 45 minutes talking about shit he doesn't like talking about. Let me make that more clear...I spent 45 minutes talking about something I needed from him, while he laid back with his eyes closed, silent. Even when I said, "are you still listening to me?" and "If you don't want to talk to me, just say that"...silence.
I was trying to tell him that I don't feel like he acknowledges or shows very much appreciation for the fact that I have to lie all the fucking time to my family.
That I have to tell my mother that I am having thanksgiving dinner with him, or that he's bombing his house for bugs and that's why she can't see it. That I have to think up an excuse for why we aren't coming to my parent's house until 3, because the real reason is that his girlfriend doesn't go to work until 1:00.
Tonight I simply asked him to help me think of an excuse (lie) to tell my mom why we couldn't come earlier. He completely dismissed me, and said "tell her I'm busy..hahaha" like it was a joke or something. I tried to explain to him that because of that comment, it made it seem like he was unappreciative of the sacrifices I make to be in this relationship, mainly dealing with the fact that he is with another (unknowing) lady.
I told him I don't ever want to feel EXPECTED
to be okay with it. I want to hear "thank you for putting up with this shit, I know it's really hard on you" I want him to be ready and willing to meet me halfway if ONCE IN A GREAT WHILE I ask him to recognize the shit I deal with and help me deal with it, too.
I was really trying to tell him that the issue is him not admitting that having a girlfriend presents these problems. He can't leave until she is gone for work, ergo we cannot leave until late, ergo I have to lie to my parents, ergo they are hurt that we aren't coming earlier.
He tried to change the subject so many times "the only reason you wanted to go up there was to get things out of storage, so lets just get that straight" he was trying to change the subject off of himself. Then he tried to dismiss the whole thing by saying "fine, go earlier by yourself, I'll meet you later (in Columbia)" like threatening me or something.
Then he started saying that all I was doing was trying to pressure him to break up with his girlfriend...which is his default position whenever I bring her up because he knows it makes me feel bad and he knows I will end up saying sorry and we wont have to talk about whatever the real issue was.
Here's a newsflash for ya: I DONT WANT YOU TO BREAK UP WITH YOUR GIRLFRIEND!!!!
I DON'T WANT YOU TO BREAK UP WITH YOUR GIRLFRIEND!!!
Then I would have to take her place and fill her shoes. I'm not like her. There is no way in hell I would sit up in that house and do your fucking dirty laundry and grocery shopping and make you dinner while you were never home. While you were never there at night, while you never slept with me. No fucking way I would trap myself in a suburb with a man who won't even show the least bit of appreciation towards me why? Pride? He's too manly to show his feelings?
You've got to be smoking crack if you think I want to be in that situation. With you, yes. If you wanted any of the things I want in my life. If you were willing to travel with me, if you were willing to let me do the things I love without worrying about hurting your feelings for no damn reason other than possessiveness. If you would appreciate me and compliment me occasionally. If you had anything positive to say about my life or myself.

And I guess that's that.

Fear is the enemy here.

2010-04-14T01:10:00.002-05:00

I know this much is true:

I am not a careful person. You don't normally see me with much restraint. I do what I want when I want without much care as to what it entails. It sounds crude but I don't mind. I trip over shit because I don't ever look at the places I'm stepping, only to my destination. I run into doors. I hit my head and drink old water on accident because I forgot to take it to the sink and I puncture my eyeball with an aloe plant. I get my jeans dirty only 5 minutes after taking them from the dryer. I let my car get so messy I can't take any passengers before I clean it. I fall down stairs and I get mad and kick stuff and break my toe because I forgot I didn't have shoes on. I go to the bathroom and forget I'm connected to an IV and pull out the needle on a fairly regular basis. I kick my partner in the face while we're having sex because I kind of forgot he was there.
I'm not careful, or graceful, or suave or whatever.
Stop trying to make me be. I'm not ready, nor do I believe I will ever be ready to be a typical proper woman. Stop making me feel bad for the way I am. It's how I am.
Goddammit.

I'm a fucking fool.

Its like this and like that and like this and...uh?

2010-04-13T01:10:00.003-05:00

Feeling a bit better today. More...human. It helps if I just forget everything that is negative. Even if it presents itself, I literally ignore it. It doesn't go away, but it's kind of like acting in a movie, it becomes a game to see how long I play the part. Not perfect, but functional.

I rode on the Harley today. The first time he brought it out this year. Anything dangerous or painful- I crave. I need. I find enthralling and riveting. I want more. I love feeling at the complete and utter mercy of fate and chance and accident. It makes me feel so alive...so normal. So equal to every other body in the world.

I had a dream last night that I got my transplant. I went for it, and then 2 days later I woke up, was walking around, and had a very thick bandage around my sternum with an ice pack against my breastbone and underneath the gauze. I realized I was alone, as in there was no family or friends near me...only doctors and other patients. I was walking outside and it was hot and humid. My heart was beating very hard and very fast. I called my partner, and my mom, and my friends. They said they didn't know I was there, that I must not have called them when I got the call for my transplant. I felt really guilty and bad. Then I called my doctor, and asked whose heart I got...
"I can't tell you that, you know this"
"I know, but make an exception, I just want to know how young the person was"
"sorry, nope".
Then I woke up.

My medicines make me something like 40% more at risk for skin cancer. Even the shortest bit of sunlight makes me burn...for instance standing on the front porch for 5 minutes. And not just like "oh, darn I'm sun burned" But "fuck I need to lie in a bath of ice cubes and aloe for the next 10 days, and bring percocet" kind of sunburn. Point being...I've got several heat rashes right now and they fucking itch.
The medicines also cause severe photophobia. I can't stand bright lights. The sun physically hurts my eyes. The lamps above pool tables cause me pain while I'm shooting pool.
It's unfortunate, but my medicines kind of make me a vampire.
Muah hahaha.

What else?
Nothing much.

Goodnight. Self. And Insomnia. And you...person reading this who doesn't exist.

Fairy tales gone terribly awry

2010-04-09T00:19:00.005-05:00

I am so tired of sleeping alone.
Every night my partner has to go home around midnight. My proverbial Cinderella. Only there's no glass slipper or story of a happy ending. Even if there was a glass slipper, I already know where to find it's owner so there's really no mystery there. It would belong to a man I'm in love with, at his home that he shares with his girlfriend of 12 years, a woman who doesn't even know I exist. A woman who is blind or dumb to his endeavors. He comes to my house every evening and we play nice like a happy couple, and it feels good and "normal" but then he starts checking his watch every 15 minutes so he can make sure he doesn't stay too late, so his ignorant, or damaged, or dependent, or oblivious, or...abused?...girlfriend doesn't get suspicious.
What is the point of our relationship?
He isn't interested in the things I am interested in. We don't agree about politics, class, racism, gender, or even about simple things like etiquette. It may sound ridiculous, but he asks me to go in the bathroom if I have to burp or fart, because "women are dainty creatures" and "aren't supposed" to have bodily functions.
He always has something negative to say. Always, without fail, even when there is a compliment to be had, he adds a stinger at the end. His compliments are back-handed insults.

The very nature of our relationship is a catalyst to my every insecurity. Insecurities that believe it or not, I've worked my entire life to dispel, or to weaken. My whole life I compared myself to a ridiculous standard of beauty. It caused me to compare myself to other women, with completely different bone structures than me. Women I could never be, but starved myself to be more like, threw up my meals to be more like. I spent so many years teaching myself to love my body and my skin and my face and myself. I got to a pretty positive place self-image wise. But apparently no matter how sure of yourself you are, no matter how beautiful you believe yourself to be...if someone you care about tells you otherwise or acts otherwise it is so so so so so sooooo hard to combat those messages. I started comparing myself to other women again. Women I saw him looking at, women I hear his friends making objectifying remarks to/about/at. I started getting mad at the women for my partners lewd remarks and gestures. I was mad at them for being more desirable than I thought I was, or more deserving of his attention.
Recently I've realized my behaviors. I've made an enormous effort not to even look at other women. Not to objectify them and break them apart into comparable body parts. And in doing this I'm starting to regain a sense of self. I'm starting to rummage through the pieces of myself that I've let fall to the wayside to preserve his feelings, possessiveness, and archaic rules of propriety. It's hard, but a work in progress and progress is going well.
What's wrong with me?
What am I doing with this person who occasionally makes me happy beyond compare, but mostly just adds tenfold to my feelings of imprisonment and confinement and claustrophobia. Why do I put up with it? Because I love him? Because I care about his feelings and don't ever want to lose his feelings of love for me? Love sucks.
Love sucks
Love sucks
love suckslovesuckslovesuckslovesuckslovesuckslovessuckslovesuckslovesucks.

Fuck

I DON'T WANT TO SLEEP ALONE ANYMORE.

.

2010-04-08T12:14:00.005-05:00

ERGHHHH!!!!
I hate waking up in a perfectly fine mood only to have it smashed to bits by some insensitive fuckwad.
I CANNOT LEAVE COLUMBIA!! I cannot be more than 2 fucking hours from st.louis. For 2 grueling years its been this way. I have to watch passively my friends moving and exploring and having adventures while I rot away in this shitty town. Do you think I want to be here? Living in a house with 8 people? I have ONE ROOM to call my own, and its bulging with my containment. Do you think I want to be here, desperately trying to find things to occupy my time? Fighting constantly with my partner because he's the only one who ever hears this crap and it wears him out?
So when you send me stupid messages and annoying comments like "you would love this wonderful awesome place I am at, why don't you come visit?" or "Come see me!" or any other insensitive ramblings like that, it makes me feel like you aren't really my friend. Have you ACTUALLY forgotten that I am waiting for a heart transplant? Have you ACTUALLY forgotten that I can't leave this place? Have you ACTUALLY forgotten that I am dying and you aren't making it any easier by teasing me with all the wonderful things I may very well never experience?

It pisses me off when you talk about how awful your life is because you can't decide what to do given the volume of your options. Cry me a fucking river.
It pisses me off when you tell me you're going to do a health study where they inject you with TYPHOID FEVER. You are perfectly healthy and you're just throwing it away for what? $4000 dollars? Here's an idea...get a job you asshole. At least you can get a job and support yourself. You don't even understand how degrading it is to get $500 dollars a month from the government and not be able to work to support yourself.
It isn't fair that I have the will and drive, but lack the ability, and fools like you have all the ability in the world and you're pissing it away. You're pissing on me and laughing in my face.

Not that I want to tell anyone how to live their lives. Or how to treat their own bodies...just that it's so frustrating.
So frustrating.
So frustrating sometimes to think I have this strong support system, to think I might have made good enough friends over the years that they can respect me a little bit. By not making insensitive commments that prove just how normalized my illness has become to them.
I know, though, that when the call comes for me to come lay on the hard cold steel table and have my HEART SURGICALLY REMOVED AND REPLACED WITH THAT OF A CORPSE, my friends will come and see me, and shmooze, but ultimately I will deal with it alone because that's my curse i suppose.

Or maybe my friends will step up and suprise me, being jarred by the reality of the situation once I'm on the operating table.
MEh.

Blogs..
For complaining.
wah wah wah. Woe is me. I am sad. Wah.
My life is so bad. Meh meh meh.
Poppycock.
blah.
blah
blah.

Sometimes I feel like my emotions are going to break me.
I hope not, though. Because I have places like this to share my frustrations.

Yep.

2010-04-08T01:31:00.006-05:00

My dreams.
Are becoming an entire existence. Last night I dreamed more than 4 dreams. One was very intense...about being interred in a death camp of sorts, in cramped conditions. My head was shaved and I was thrown into a small dirt-floor room with 15 or so others. We didn't have anything in common, really. Nothing obvious anyway.
When I left the building I was in a long outdoor corridor...an alley of sorts...with other shack-like structures lining it. Surrounding the corridor were 50 foot fences of steel, with no way to see out. The tops and sides were laden with razor wire.
There were people roaming the corridor and guards dressed in brown with black boots and large guns standing at and around the huge gate that was the entrance, and walking through the corridor occasionally. Every half hour or so, the guards left view and a sprinkler system came on...more like a mister. It sprayed everyone in the area.
After a while I made some friends, and then as time passed, people started dying. They would start getting sick and become very skinny. Then they would start coughing up a disgusting greenish gunk from their mouths. They would get really violent and then die by exhausting themselves in undirected rage.
I started getting sick, but a few of us, myself included, didn't go past the sick stage. We felt like shit, but didn't die. We all eventually discovered/deduced that this was a testing facility for mass biological warfare,and that we were resistant and therefore valuable to their research.
Then a loud siren went off, and all the guards marched through the corridor in a procession line. They were being called to some sort of fight, and I was making plans to escape before their return...when I awoke this morning .

When I did awake, my head pounded with a migraine. I found that the blood vessels under my eyes were ruptured. From screaming in my dream. From holding my breath while being tortured in water.

My dreams have always been vivid. I've remembered nearly all my dreams since my first one when I was 3 years old. It's like a part of me lives in another world. There are many recurring places that I dream of. Familiar, homey places. The old house with the impossible construction. The forest where I was a ghost, where the old tree spoke to me and I saw it's whole life in front of my eyes. The haunted house with a roller coaster, where I've faced some of my deepest fears. The school with the old rotting staircase. These are places I visit with regularity, picking up where I left off in my last dream. I know I am dreaming and can become conscious in the dreams. I cannot control what happens, only what I do...whether that be flying, running, crying...whatever.

It's new, though...that my dreams are affecting me physically. A bit distressing. Is there something wrong with my brain? Why are my dreams so vivid and so real? So frequent and jarring? Its interesting.
For sure.

for sure for sure for sure

AHHH SHIT

2010-01-31T01:07:00.002-06:00

Today is...interesting. I've been doing a lot of the things I used to do now that my partner is out of town for two months. I've been going out at night with my friends who have work and school during the days...which means I haven't seen them at all for almost 6 months.
I know it isn't his fault that I never go out. I am just scared to tell him I want to do stuff on my own. I don't want him to think I don't want to spend time with him and then pull away from me because he thinks that's what I'm doing. I also know his past (and present) history of cheating. He's told me all about his escapades at his favorite bar. Following girls into their cars to fondle them, going home with waitresses after hours and hooking up with other strangers there.
Not to mention all the times he's told me about hooking up with his old co-workers. At least one person at every store he owned- which is 35 over the course of 6 years. On top of that all, he's cheating on his current girlfriend with me. So that makes me feel cheap, and automatically weary of his intentions.
So bottom line is that I fear if I go out, and am not constantly around to keep an eye on him- he'll take that opportunity to flirt and schmooze, and generally just be himself. And that's scary to me. Because I don't want to be like his ignorant girlfriend. I dread the thought of someone I love abusing my trust so completely and being totally unaware of the entire thing.
Not to mention that if he sleeps with someone and gets an STI, I could get it. And STI's with a compromised immune system are scary scary dangerous life threatening...
It is very nice to have time with my friends, though.

In terms of my health...eh. Physically I'm pretty okay, besides the holster monitor they've put me on in lieu (because of my persistent refusal) of an internal or external defibrillator. It gives me horrible rashes and scabs underneath the electrodes. I'm actually not wearing it right now...taking a break for a while.

Mentally I'm in a weird place, I can't really describe that. I'm trying very hard to break out of patterns that cause me to feel unhappy. Thought patterns, behavior patterns. It is very difficult and I find that I'm still pretty ambivalent to everything. There are awesome things going on around me, but all I can think about is the future. All I can think about is what I wish I was doing, or how it would be different if I was at this or that point in my life. It's a problem that needs to be dealt with, but in the meantime it really makes for a bland outlook on everything. I feel just kind of "BLAH" most of the time. Numb? That's as close as I can come to accurately describe it.

I joined a band and I'm screaming again. That is really helping release some energy and negativity. Also, I have a show coming up with my acoustic set, which is now only covers. Hahaha. That's exciting and keeps me busy. I had some car trouble and computer trouble which set me back $1100. So I haven't been playing much pool lately, even though it's still a passion of mine, and I would love nothing more than to be able to become a professional at it. I wish I had a money fountain.

There's lots more. But that's all for now. Goodnight!

2009-11-20T12:30:00.001-06:00

Egh...
Today, I feel non existent.
I feel like I'm always waiting for something to happen. But nothing ever does.
My body feels numb. My skin feels numb. I can't even feel my partner's touch.
Thanksgiving is coming up, and I'm not looking forward to it.
I can't go home because I can't be more than two hours from my hospital.
Everyone in my house is leaving town. My "boyfriend" is spending the day/evening with his girlfriend because she likes to cook on thanksgiving for him. Also, he doesn't have an excuse to leave because everything is closed on that day.
Reason number 3452 I feel useless and undesirable.
I am not good enough.
I am not enough.
I am not.

Sick.

I've started therapy. One is a traditional form, you know talking to someone about stuff. The other is an "alternative" form of therapy. I wont go into details, but I'm excited about it and it's pissing my partner off because he doesn't understand it. I have horrible abandonment fears, so after weighing my options against the possibility that he might leave me should i choose to do this...i decided to go ahead and thats a huge step for me.

What, if anything, is accomplished from it, is to be seen.

I had a dream that I got the call for my transplant last night.
It was more like a nightmare. I just fell on the floor and started crying, and they had to drag me towards the operating room. I was so fucking scared. I didn't want to do it at all.
I fear this mimics what will happen in real life.

uncertainly certain of it.

2009-08-24T21:24:00.000-05:00

um.
I'm in the hospital right now. It used to be that the only thing I got stuck in here for was my heart problems, but not recently. The last few times i've spent time here it's been for infections that are a result of my immunosuppression. This time it's klebtociala (that's not the right spelling), a blood infection.
I don't know, and they don't know, how or where i got it. Story of my life, really.
The disease that killed my first heart at age 11 was "idiopathic" so they don't know what caused that. My allergies and severe reactions to most medicine are also a mystery.
One can only speculate where I got the histoplasmosis two years ago that sent me into a pseudo-coma and renal failure.
And now this stupid blood infection.

Ugh.

I feel shitty. I hate being in the hospital, i hate it so much. it's like prison. I have to constantly watch my back. My nurses and doctors don't know how to listen to me. Even though about 4 different people ask me the same thing every day, there are 13 different answers in my chart. they misconstrue what i say to fit their stupid little graphs and numbers. How can pain always fall on a smile-face meter? oh, today i'm "slight frown"...i think...because i can't really compare it to "crying hysterically sad face" because i've never experienced the worst pain imaginable.
blegh.

Being here only serves to remind me what a long hard road i have left until i can be free to live my life like i want to.
I wonder if i have it in me to go through another heart transplant...i mean i know i do, but what if it makes me not care anymore? I feel so trapped here in this hospital, but then i think of what waits me at home and it's honestly not much better.
Stay in bed and watch tv? check
get out of bed to pee, shower, eat? check
stuck, can't get out, feeling of suffocation? check.

Everything feels very fake right now.
my life feels like the moments in a movie that you don't see. I am the proverbial in between of living.
I'm living here.

2009-08-13T00:08:00.000-05:00

I haven't written in a while...
First off, my computer crashed and I'm too poor too fix it. But that's not a bad thing, really. I all of a sudden find myself with tons of free time. Which brings me to secondly.
Secondly, I decided in December, when my computer crashed, to start seriously learning to play pool. I've always enjoyed playing with friends in a bar setting or whatever, and I was never all that bad. I knew how to hit the ball really hard and make it into the pocket. Usually.
But in December I really needed to get out of my winter slump, and so I thought I would pick up a hobby.
I was so wrong!
What I picked up was an obsession. An addiction.
Luckily for me there is a billiards place only a couple blocks from my house, and this town is small enough that I didn't have too many onlookers while I was making a fool of myself at the table. I started spending hours and hours there, just setting the balls on the table and making shot after shot. I started being able to spot the regulars- all older men- and even getting on a wave-at-each-other basis with them.
Then a man approached me one evening after seeing me there a few times. He offered some advice and that's when I learned that pool was a sport, one that I could learn about. I realized that it wasn't just about luck, or about getting the object ball in the pocket. There are definite facts and rules of engagement and skill involved.
And now you can't get me to do anything else.
I practice as much as I can now. All of my income goes towards playing pool. I am in a nine-ball league on sundays at the billiards place up the street, a TAP league on tuesdays at the place a couple towns over, on mondays it's snooker with the same regulars that I am now a part of, and on saturdays the TAP place has tournaments. And every other spare moment is practicing.
There are some shitty things about playing pool for me, though.
Its so expensive! I can't have a job right now because of my status on the heart transplant list, and I've asked the owner of the billiards place twice if I could work for him in exchange for free pool. He said no both times. The place where I play TAP is free on two nights out of the week...which I take advantage of despite the health risks of playing in a smoke filled building. I just don't understand how people become really good if they aren't able to practice all the time. Do you have to be rich to be good?
And then there are the men who are just assholes. I've never played a woman in a tournament or in either league I'm on. Once a guy stuck his hand up my skirt at a table, and plenty of jerks like to stare at me like I'm a piece of meat, or like I'm bending over to shoot to seduce them. And let's not forget about the excuses I get when I kick a man's ass playing. "oh, I just can't focus completely when I play a woman" or "it's a mother complex" or "It isn't nice to win to a lady"... I constantly get negative feedback from the people I play with. I'm not asking for anyone to kiss my butt or shower me with complements...but when I legitimately win and play well, I hate to be shoved down with comments that make it seem like I didn't win by my skill, but by their lack of it.
But anyway.
Im so glad I've found a passion that I can focus on right now. Wish me luck!!!

2008-12-26T23:41:00.000-06:00

I know it's a rotten trail of nothing but trouble, but I've been doing research on the side effects of some of my medicines. After the third month of getting IVIG, I started developing a really bad rash on my left hand. Every month it gets a little worse, and this month it's really bad. So anyway...I didn't find anything about rashes.
Just a whole shit ton of warnings about all these crazy things pertaining to both IVIG and to milrinone, the drug I'm on CONSTANTLY.
No one has told me anything.
Do my doctors know this shit?
If so...why am I allowed to be at home, and why are my cardiac arrhythmias just shrugged at?

*sigh*

The use of milrinone both intravenously and orally has been associated with increased frequency of ventricular arrhythmias. Long-term use has been associated with an increased risk of sudden death. Hence, patients receiving milrinone should be observed closely with the use of continuous electrocardiograpic monitoring to allow the prompt detection and management of ventricular arrhythmia. Patients receiving milrinone should be closely monitored during infusion.

There is no experience in controlled trials with infusions of milrinone for periods exceeding 48 hours.
Whether given orally or by continuous or intermittent intravenous infusion, milrinone has not been shown to be safe or effective in the longer (greater than 48 hours) treatment of patients with heart failure.

WAIT, WHAT THE FUCK????

Worried.

2008-12-25T20:39:00.000-06:00

I am worried.
Worry worry worry.
Furry.

Seriously though.

I don't want this space to create hurt feelings or for my own feelings to create a reason for my name to disappear from the transplant list.
It's a touchy situation- spilling everything for the entire world to read- not that I think the entire world reads my blog- BUT... I feel like the risks are too great and the benefits too numbered.
So from now on the only experiences I'll share are ones from the hospital specifically, I'm going to leave my (home) personal life out of it.
Why do you care about my shitty relationship with my family?
Haha...you don't.
So lets talk about the article I'm writing for the American Academy of Pediatrics bi-annual newspaper. I want to bring to light some of the shitty situations people encounter when transitioning from a pediatric hospital to an adult one.
I haven't been contacted back yet- but have been told that from time to time the Academy publishes pieces from sources other than professional physicians...so keep your fingers crossed.

First of all- it's important to understand that I had been at the children's hospital for 7 years (and still should be) when I was made to leave.
In November of 2007, I developed histoplasmosis after a caving trip. With my weakened immune system, I quickly developed pneumonia, and with a collapsed lung and kidney failure I was in the intensive care unit for 13 days. It was during this time that the state sent out their yearly "audits" to make sure people are still eligible for medicare. Since I was hospitalized the form went incomplete past the due date and I actually lost my medical coverage.
I talked to a few people and they told me to simply re-apply. I didn't think anything of it when they told me I was too old to reapply for medicare. I had to apply for medicaid. What they neglected to inform me was that my current hospital didn't accept medicaid because it isn't usually used in young people... I believe "old ass insurance" was the term used.
So...at a time when I was being put on the heart transplant list, and had lots of other shit going on, I had to completely switch hospitals in the midst of it. I had to meet and form completely new relationships with my doctors and nurses.

I am a whiny baby.

PS...this is funny.
http://abcnews.go.com/Health/popup?id=2242810&content=&page=1

Good night.

with/without

2008-12-20T06:58:00.000-06:00

Buck up and take care of it myself.

2008-12-01T00:52:00.000-06:00

Here it is, then.
The public record of my life on and off the heart transplant list.
I've been meaning to do this for a while- we're talking around 4 years. Unfortunately (or maybe it's a good thing) the lack of resources for young adults who've had/are waiting for heart transplants is ridiculous. I've been searching the Internet forEVER, looking for anyone who is talking about their experiences with this specifically.
Sure, there are resources for the technical aspects of the entire experience: what happens before/during/after, waiting list data such as UNOS, and multiple sites for the parents of pediatric transplant patients. This is all great and helpful, but to an extent.
I'm tired of coming upon these websites dedicated to chronicling how to retire after transplant.*
*Can I clarify here? I don't mean to invalidate the feelings of persons who feel this way, or the obvious support that groups like this present; I am trying to give a voice to people stuck in the system limbo between adult and child.

Hopefully this blog can shed some light on the experiences of a lifetime stuck in the medical system- as it is for me, and young adults in general.
Because fuck knows I can't wait another 6 months to see a psychologist.