News, but more importantly.

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.

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.

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

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.

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.

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.

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.