22.10.12
Happy fucking birthday.
12.9.12
The heart of the matter.
Today, I learned of a death.
A woman.
I didn't know her well. I mean, I'd never met her in person. We talked on the phone once or twice and I knew her husband because he's a bouncer at a bar I go to sometimes. I'd also heard about her through my doctors, though. Because she had a heart transplant 6 years ago. She had a really rough time after transplant. Her heart was fine...but everything else was wrong. Her gallbladder, getting infections, bone problems. But her heart was fine.
I'm not sure how she died, but I'm pretty sure it wasn't related to her heart.
It was fine.
I am so tired of death.
I am so tired of thinking about time, and of thinking about statistics, and of living in a state of perpetual utter panic and anxiety about all the things I need to do AND QUICKLY before I quit outrunning that fucking asshole and the finality brought with.
I am tired of getting statistics in the mail. "By law we have to tell you your yearly survival rates". Second transplant...70% one year out. 60% after five years...but hey it's better than the national average!!! After five years it just gets fucking grim. And all these people dying around me...all these stories of people being fine for a while and then suddenly dying. All these things I want to do and need to do and my terrible decision making abilities and my relationship problems and anxiety and pain and crumbling bones and strained muscles and reading a story of a heart transplant patient who ran in an ironman competition or climbed a mountain and being so close to some people yet so fucking far away because how the fuck could anyone who wasn't dealing with it know how terrible and enlightening and frightening it is to live so close to death....these are the things my brain is filled to the brim with.
I feel. Numb.
I feel so tired and so numb. I feel tired of being confused.
I feel confused at being tired.
I don't know how to feel anymore.
I lived, she died, they died, you will die instead.
Does this mean I'm special? To who? To what? Why?
Can I actually die? I've lived through more than an average person can claim. And it just keeps fucking coming. I just keep being disabled, no matter how I wish it different, no matter what I do or don't do, I'm still here, in this body, with these problems and thoughts and unanswered questions.
I try to talk to people about it.
I try.
"Well we all die, you know" They say in a consolation attempt.
"You just have to look at the bright side, it could be worse!" They retort.
Well fuck you for all your help. People don't get it. And how could they? I don't expect them to.
I'm sorry you died, Angie. I hope you were at peace with that.
I might be developing cervical cancer, my bones are slipping around my spine, my fellow patients are dropping like flies around me and I'm dodging death like I'm in that fucking movie Final Destination, but hey...
My heart is fine.
7.5.12
I'm alive, but I'm broken.
I don't feel sorry for myself. My life, a subplot to a slow-flowing movie without an end.
There is something, there are some things that need to be said. Whiring machines delivering death blows to my veins, through my plumbing to the microscopic culprit. pop. whir, searing pain. My vein rebels, commits suicide, a martyr to the ongoing war under my skin, but if it would just behave things would be easier. A tough interior. Maybe one day it will rise again, a miracle, but 10 days later and as (not) per usual, it's still in the throws of rigor mortis. children laughing in hospital hallways. Hallucinations of the truly malevolent sort, the veil between worlds at it's thinnest. Metal tables, restraints, gas masks and naked on the cold surface of an operating suite. A suite-but there's no coffee or cable. tears, screams, cries so loud they penetrate concrete walls and your brain. Death. Babies. Dead babies. Good-as-dead mothers. Curtains pulled for the illusion of privacy. Bad news, everyone's business. needles, deep, deep, deep in my neck, groin, arms, hands, spine, face, feet, elbows, arms, fingers, thighs, wrists, arteries. Watching. They numb the skin buy they can't numb the nerve endings, heart sacs, bones, lungs or tendons they inevitably puncture. Thank you for letting me watch. An incision, a long, long, deep incision. Catheters. Catheters in my groin, catheters in my urethra, my veins, my arteries, my heart. Needles in my cervix, through my lip, along my back. Control. Puking. The medicine in making it impossible to eat. I eat, I wait, I puke. I stick my fingers down my throat, control. I make incisions, control. I stick needles in my skin, control. Beeping, beep beep beep that fucking beeping taunting me. Beep your heart's still beating beep you're out of medicine beep can I help you beep I'm done shitting beep you're dead. I'm dead. I'm talking, okay, I'm fine. I'm feeling funny I'm dead. Black. Nothing. Gone. Peace. peace. peace. Regret. Panic! I'm alive, but I'm broken. Dialysis whir. broken ribs, breathing tube, conversations on paper when my throat is stuffed with tubes. Are those even words? Monster eyes, I see you. Blurry. blurry. Beep pain medicine beep narcotics addiction. Control. Drip drip drip I.V poles...I'm beginning to loathe all things metal. Tubes so many tubes. Fluid so much fluid. So much blood so many bruises. So many scars. Needles in my ribcage 1 inch long, every second of every day. tubes. Frustrating. unfair. deserved? Accepted. broken ribs are forced apart. I'm helpless. Latex gloves reach inside my chest, rip out my heart, my broken heart. Aortas everywhere, cadavers, dead girls, accidents, dead babies, charred remains, twisted metal. I fucking hate metal. rubbing alcohol. Nose bleeds, I shit myself walking into the hospital, I'm really sick but I drove myself here. Alone, all alone, always alone. Lonely cards, get well soon. Stop making us uncomfortable, either die, or don't, why do you have to linger in between? (in so many words). Visits are less and less frequent then non-existent. Old hat. What's new? Surgery, so what. Grow up. grow up. grow up. can't coddle you. real world, grow up. Blood on a canvas, control. The dreams, oh fuck the dreams. The side effects. dreams and bones turning to dust. Well, mud what with all the fluids. I really hate metal. nightmares and an empty bed. A new family sterile and stern and better than nothing. a conference, communication is key, laughable. broken dreams for broken dreams. death in exchange for life. I am a stealer of hearts. I am a thief of life. My life is broken in return for existing. A deserved trade? Accepted.
15.3.12
I broke up with my parents.
I just got really serious with my parents,
So my mom has been being really weird on facebook lately, making really passive/aggressive remarks on my friend's page's and her own. She called me the other day to tell me my brother broke his right wrist and arm. During the call she said something that made no sense whatsoever, like total gibberish. When I asked for her to repeat it she freaked out and said "Jesus, I make mistakes, okay? I can make mistakes, too!" So just stuff like that lately. Also, she offered my sister $100 to come to the lake and visit them. Yeah. So money must not be a problem like they've been claiming, right? Well read on.
So she texted me this afternoon, to tell me about Alex's cast and stuff. I'm just gonna type the conversation out because that's easier than saying he said she said. My words are in italics, hers are not. Any comments I make are in parenthesis.
Sorry you're doing crappy going off the steroids. So sorry! I love n miss u sooooooooooo much!
I heard you offered Jennie 100 bucks to come see you guys. Maybe you could use some of that money to come visit?
I offered her money to fill up her car so that she could come to the lake to borrow money for her phone bill.
I'm free all day every day, I play pool at night but if you told me you were coming I could figure something out. Fridays/Saturdays/Sundays I'm free day and night.
have some time off, occasionally, minus 2 kids in school, work and school lol. would love to come up OR you come down that would be awesome too, we could go to the mall and khols, we love you! What u think?
I think I'm never stepping foot at the lake again until you guys come visit me. (at this point I just thought what the fuck, I'm done pretending).
Wow. Really?
Yes. Absolutely.
Seems kinda unreasonable.....
(OH THIS PISSED ME OFF!!)
(It took me a long time to type the next one out so she wrote "don't u think???????" )
What's unreasonable is the fact that in three years my parents couldn't visit me once in the hospital. I've been fed up with it for a while but my love for you guys made me overlook it. I just can't overlook that when I needed you most in my life, during recovery, you weren't there. Don't you remember that phone call in November when I expressed all this to you and you promised to try harder? Well 4 months later...you're unreasonable, not me. And I find it hard to believe that in 7 months you couldn't scrounge up a few hours and 50 bucks to come support your seriously fucked daughter.
Your little brother and sister are in school now Jessica! Plus I'm working and in school...I'm sooooo sorry u can't understand this. We love you and are hurt u cannot understand this. It's not the money that we have to scrounge up it is the TIME...don't forget to remember all the times we were there in the hospital, packing up christmas, and cleaning an ungodly room out to make sure you were set (seriously, they visited maybe 6 times for like a cumulative total of 24 hours in 10+ years, came to my house for christmas one time, and helped me clean my room one time. ) WOW your dad and I are hurt and blown away....
Do you understand what I'm saying???
Do you understand????
Please answer.
I'm not wasting anymore of my precious time begging you for the support I need. You have excuse after excuse. You've done the bare minimum, you want an award??? It's pretty bad when my doctors and nurses ask me if my parents are dead or in another country. Sooooo sorry you cant understand how shitty that is. When you decide you guys want to be there for me, let me know. Until then lets just postpone and happy go lucky trips to the mall.
They'll probably shut off my phone. I'm proud of myself for standing up to them, but at the same time I feel like they truly believe what they said. That they have been such strong support to me, that because they came and helped me clean my room once, and they came to the hospital a couple of times for a couple of hours in 10 years, they're parents of the year. Then my mom posted this facebook status "I'm heartbroken and blown away..." and everyone in our family is like "oh what's wrong?". She's such a twat. I was just thinking earlier, what will I lose by not having them in my life. The answer is nothing. What will I gain? nothing. But at least I won't have to pretend that we're some big happy family. I won't have to hear my mom's condescending tone and know-it-all comments because she thinks if you take a chemistry course you're a nurse. Here is what I wrote recently in response to the question,
Describe your relationship with your parents: FAKE, FALSE, LIES, PAINFUL, UGLY, DISAPPOINTING, DISTURBING, LACKING, TERRIBLE, DEAD. I am so fucking pissed at my parents I don't think I can ever forgive them for what a shitty, lousy, detrimental "support" system they've been. To hear it from my dramatic mom, you'd think they held my hand and whispered sweet nothings in my ear since the day I got sick when I was 11. Not even fucking close. Sometimes I would come home from the hospital (where no one had visited me) and my mom would berate me for not doing the laundry because "It's not that hard, you just have to sit on your ass and fold clothes" once my parents made me go to a surgery by myself. When I told them I had to be put under and couldn't drive myself home, my dad actually said "I don't give a fuck!" and my mom said "Figure it out, what do you think is gonna happen when you go to college? We're going to drive you to your appointments still? Uh, no way!" When I got to the hospital all I could do was cry and cry and cry. Some of my nurses ended up offering to let me stay at their houses that night. My parents are fucking cowards. I waited for a transplant for 3 years. They visited a few times during that period, but never even once when I was sick in the hospital, which for the record was over 10 months total out of the three years. A lot of time, a lot of procedures spent alone with nurses and doctors who stood in for my family. Doctors ask me if my parents are dead or in another country because they haven't met them in 3 years. When I was in the children's hospital other sick kid's parents would hear me getting sick in the next bed and come hold my hair back for me, or hold me when my doctor's first told me I needed another transplant. And my parents think that because they show up a couple of times, spend an hour and bring me panera bread or brush my hair, that everything is peachy fucking keen? No, it's not. Once in children's hospital all my doctors and nurse practitioners and social workers gathered together to talk to me in a board meeting room. They said that since I obviously do not have any parents or responsible adults to help me that they would gladly help me figure out stuff with housing closer to the hospital and getting into school in St.Louis (I was very sick and needed to be nearer to the hospital at the time). That is fucking poetic. I had been severely ill my senior year of high school, and had just begun to get better when I went to college, yet when I began to get ill again less than a year later, in 2007, my parents said it was my "lifestyle" (which they neither understood nor wanted/tried to) that was making me sick and that it was my own damn fault. They closed my banking account,took back the car they let me use during college (and the car I desperately needed to get to and from appointments) and basically said "good luck". What great human beings. This is all just the health stuff, I won't even get into how my father called me a fat ass and a ball and chain and cunt. How he slapped me punched both of my mothers in front of me, how my mom stood up for him and read through all of my journals trying to find an excuse to put me away. The real kicker is that after all of this the rest of my family and my parent's friends think they are my "rock" and that they are these wonderful stoic people who have a sick daughter poor them. I wish everyone knew just how fake it all is. Just how deep the lie goes. Just how devastating the truth has been to me. My dad is a sad man. He can't even call me. At least my mom does the obligatory phone calls to ask if I'm alright. My dad just ignores me like I don't even exist. My mom gets off on the attention of having a sick child, and that's the truth. I don't want them in my lives anymore, and if it weren't for my beloved brother and sister, I would say FUCK YOU YOU PIECE OF SHIT SORRY EXCUSES FOR PARENTS. YOU SUCK. AND WHEN YOU GET CANCER OR NEED MY HELP AFTER A TRANSPLANTED ORGAN YOU CAN GO FUCK YOURSELVES I FUCKING HATE YOU AND I WANT YOU TO KNOW I THINK YOU SUCK SO FUCKING MUCH. YOU ARE PATHETIC. And that is my description of my relationship with my parents. :) They had better not try to keep me from seeing my brother and sister or I'll fight them so hard. I love my brother and sister unlike anything else in the world and I refuse for them to put our drama between siblings. It doesn't have anything to do with them. Although when my brother called me the other day (he's 10 years old) he wasn't excited at all to be talking to me. I can't help but envision my mom making rude comments about me, and making them think badly of me. I really hope that doesn't happen. Fuck them. The end of that shit.
So my mom has been being really weird on facebook lately, making really passive/aggressive remarks on my friend's page's and her own. She called me the other day to tell me my brother broke his right wrist and arm. During the call she said something that made no sense whatsoever, like total gibberish. When I asked for her to repeat it she freaked out and said "Jesus, I make mistakes, okay? I can make mistakes, too!" So just stuff like that lately. Also, she offered my sister $100 to come to the lake and visit them. Yeah. So money must not be a problem like they've been claiming, right? Well read on.
So she texted me this afternoon, to tell me about Alex's cast and stuff. I'm just gonna type the conversation out because that's easier than saying he said she said. My words are in italics, hers are not. Any comments I make are in parenthesis.
Sorry you're doing crappy going off the steroids. So sorry! I love n miss u sooooooooooo much!
I heard you offered Jennie 100 bucks to come see you guys. Maybe you could use some of that money to come visit?
I offered her money to fill up her car so that she could come to the lake to borrow money for her phone bill.
I'm free all day every day, I play pool at night but if you told me you were coming I could figure something out. Fridays/Saturdays/Sundays I'm free day and night.
have some time off, occasionally, minus 2 kids in school, work and school lol. would love to come up OR you come down that would be awesome too, we could go to the mall and khols, we love you! What u think?
I think I'm never stepping foot at the lake again until you guys come visit me. (at this point I just thought what the fuck, I'm done pretending).
Wow. Really?
Yes. Absolutely.
Seems kinda unreasonable.....
(OH THIS PISSED ME OFF!!)
(It took me a long time to type the next one out so she wrote "don't u think???????" )
What's unreasonable is the fact that in three years my parents couldn't visit me once in the hospital. I've been fed up with it for a while but my love for you guys made me overlook it. I just can't overlook that when I needed you most in my life, during recovery, you weren't there. Don't you remember that phone call in November when I expressed all this to you and you promised to try harder? Well 4 months later...you're unreasonable, not me. And I find it hard to believe that in 7 months you couldn't scrounge up a few hours and 50 bucks to come support your seriously fucked daughter.
Your little brother and sister are in school now Jessica! Plus I'm working and in school...I'm sooooo sorry u can't understand this. We love you and are hurt u cannot understand this. It's not the money that we have to scrounge up it is the TIME...don't forget to remember all the times we were there in the hospital, packing up christmas, and cleaning an ungodly room out to make sure you were set (seriously, they visited maybe 6 times for like a cumulative total of 24 hours in 10+ years, came to my house for christmas one time, and helped me clean my room one time. ) WOW your dad and I are hurt and blown away....
Do you understand what I'm saying???
Do you understand????
Please answer.
I'm not wasting anymore of my precious time begging you for the support I need. You have excuse after excuse. You've done the bare minimum, you want an award??? It's pretty bad when my doctors and nurses ask me if my parents are dead or in another country. Sooooo sorry you cant understand how shitty that is. When you decide you guys want to be there for me, let me know. Until then lets just postpone and happy go lucky trips to the mall.
They'll probably shut off my phone. I'm proud of myself for standing up to them, but at the same time I feel like they truly believe what they said. That they have been such strong support to me, that because they came and helped me clean my room once, and they came to the hospital a couple of times for a couple of hours in 10 years, they're parents of the year. Then my mom posted this facebook status "I'm heartbroken and blown away..." and everyone in our family is like "oh what's wrong?". She's such a twat. I was just thinking earlier, what will I lose by not having them in my life. The answer is nothing. What will I gain? nothing. But at least I won't have to pretend that we're some big happy family. I won't have to hear my mom's condescending tone and know-it-all comments because she thinks if you take a chemistry course you're a nurse. Here is what I wrote recently in response to the question,
Describe your relationship with your parents: FAKE, FALSE, LIES, PAINFUL, UGLY, DISAPPOINTING, DISTURBING, LACKING, TERRIBLE, DEAD. I am so fucking pissed at my parents I don't think I can ever forgive them for what a shitty, lousy, detrimental "support" system they've been. To hear it from my dramatic mom, you'd think they held my hand and whispered sweet nothings in my ear since the day I got sick when I was 11. Not even fucking close. Sometimes I would come home from the hospital (where no one had visited me) and my mom would berate me for not doing the laundry because "It's not that hard, you just have to sit on your ass and fold clothes" once my parents made me go to a surgery by myself. When I told them I had to be put under and couldn't drive myself home, my dad actually said "I don't give a fuck!" and my mom said "Figure it out, what do you think is gonna happen when you go to college? We're going to drive you to your appointments still? Uh, no way!" When I got to the hospital all I could do was cry and cry and cry. Some of my nurses ended up offering to let me stay at their houses that night. My parents are fucking cowards. I waited for a transplant for 3 years. They visited a few times during that period, but never even once when I was sick in the hospital, which for the record was over 10 months total out of the three years. A lot of time, a lot of procedures spent alone with nurses and doctors who stood in for my family. Doctors ask me if my parents are dead or in another country because they haven't met them in 3 years. When I was in the children's hospital other sick kid's parents would hear me getting sick in the next bed and come hold my hair back for me, or hold me when my doctor's first told me I needed another transplant. And my parents think that because they show up a couple of times, spend an hour and bring me panera bread or brush my hair, that everything is peachy fucking keen? No, it's not. Once in children's hospital all my doctors and nurse practitioners and social workers gathered together to talk to me in a board meeting room. They said that since I obviously do not have any parents or responsible adults to help me that they would gladly help me figure out stuff with housing closer to the hospital and getting into school in St.Louis (I was very sick and needed to be nearer to the hospital at the time). That is fucking poetic. I had been severely ill my senior year of high school, and had just begun to get better when I went to college, yet when I began to get ill again less than a year later, in 2007, my parents said it was my "lifestyle" (which they neither understood nor wanted/tried to) that was making me sick and that it was my own damn fault. They closed my banking account,took back the car they let me use during college (and the car I desperately needed to get to and from appointments) and basically said "good luck". What great human beings. This is all just the health stuff, I won't even get into how my father called me a fat ass and a ball and chain and cunt. How he slapped me punched both of my mothers in front of me, how my mom stood up for him and read through all of my journals trying to find an excuse to put me away. The real kicker is that after all of this the rest of my family and my parent's friends think they are my "rock" and that they are these wonderful stoic people who have a sick daughter poor them. I wish everyone knew just how fake it all is. Just how deep the lie goes. Just how devastating the truth has been to me. My dad is a sad man. He can't even call me. At least my mom does the obligatory phone calls to ask if I'm alright. My dad just ignores me like I don't even exist. My mom gets off on the attention of having a sick child, and that's the truth. I don't want them in my lives anymore, and if it weren't for my beloved brother and sister, I would say FUCK YOU YOU PIECE OF SHIT SORRY EXCUSES FOR PARENTS. YOU SUCK. AND WHEN YOU GET CANCER OR NEED MY HELP AFTER A TRANSPLANTED ORGAN YOU CAN GO FUCK YOURSELVES I FUCKING HATE YOU AND I WANT YOU TO KNOW I THINK YOU SUCK SO FUCKING MUCH. YOU ARE PATHETIC. And that is my description of my relationship with my parents. :) They had better not try to keep me from seeing my brother and sister or I'll fight them so hard. I love my brother and sister unlike anything else in the world and I refuse for them to put our drama between siblings. It doesn't have anything to do with them. Although when my brother called me the other day (he's 10 years old) he wasn't excited at all to be talking to me. I can't help but envision my mom making rude comments about me, and making them think badly of me. I really hope that doesn't happen. Fuck them. The end of that shit.
28.2.12
Holy fucking shit, this month has been WEIRD.
Seriously. Terrible, weird, awesome, godawful and strange. All at once.
So, Ryan came home on the 5th. That was terrible. He was an asshole and I'll spare you the details but I basically dropped him off at his house after I picked him up from the airport because he was being such a doucher. So then the next day we did the obligatory "I'm sorry"'s and then I went over to his house. We had sex, and then he was weird so I left again.
The next day, we broke up over the phone. It was hard.
It was friendly though, and we vowed to continue to be friends and agreed that he would still help me with my health stuff (taking me to biopsies, etc...).
So we talked every day for a couple weeks, and he took me to a biopsy. We talked and hashed shit out (we agreed not to have sex, and tied up some other loose ends) and I actually felt pretty good about everything. It was hard, don't get me wrong...I just wasn't devastated. I was okay.
The day of the biopsy it was weird. He was staring at me and playing with my hair and walking with his hand on my butt. I could tell something was up.
Then I was at pool last week and Ryan texted me saying he was sad. When I asked him why, he said "I'm an idiot, I let a good thing go, but oh well" and when I responded by saying we both tried as hard as we could have, he said "I could have tried harder", it was confusing and odd. I asked him if we could talk about it in person and he said "some other time maybe".
The next day I asked him to go on a walk with me since it was really nice outside. We went hiking on a trail out at rockbridge park. He was talking about how attractive I looked and we were kind of flirting, and at one point my ass crack was hanging out when I was sitting on a cliff, and I said "sorry my ass is hanging out, don't look" and he said "I like looking at it". It was strange. I eventually got up enough courage to confront him about the confusing texts. I told him it seemed like mixed messages. He said he's just confused, that he didn't know what he wanted and wouldn't elaborate any more than that.
Yesterday I went to his house and we had sex...yeah...the sex we agreed not to have? I guess we were both just feeling weak and horny...so, we did. It was amazing sex, funny enough. I gave him a back massage and we had sex again. It was even more amazing the second time. Then we watched the Oscars and I went home. It was confusing.
Today I was thinking about it a lot, and he called me and I kind of blurted it out all at once. He was frustratingly clueless about everything. He said "you want me to tell you how I feel, so I told you that I'm wondering if I made the right decision, and now you're saying it's confusing you, so I just won't tell you how I feel I guess" and when I asked him what we're doing he played stupid "what do you mean, what are we doing?" I was like....um, you're sending me mixed messages. "What mixed messages?!" he was seriously flabbergasted. Eventually the conversation went sour. We were screaming at each other, I had a panic attack, and he got pissed and said he just wanted to be friends and never talk to each other. It was painful and frustrating. He said he regretted having sex "if this is what's going to happen"...like it was my fucking fault that we were arguing! He is completely deluded about his role in his own actions...he always has been. He also kept saying..."I don't know what to say...I have a lot going on right now, soooo" like because he has a lot going on right now I'm not allowed to ask questions or have expectations.
I don't know why I'm putting up with this. I'm pathetic!!!! Am I so self conscious that I'm willing to accept any affection from Ryan, no matter how fucking terrible, rather than none? Am I at that low of a point now? Really?! I am not this woman. I deserve more than this. I deserve love and affection and I fucking deserve more than the scraps of affection and confusion Ryan is able/willing to give me right now. I need to make it clear that he is not allowed to touch me.
Not allowed to touch me or tell me he likes seeing my butt crack. Seriously.
What the fucking fuck?
Seriously. Terrible, weird, awesome, godawful and strange. All at once.
So, Ryan came home on the 5th. That was terrible. He was an asshole and I'll spare you the details but I basically dropped him off at his house after I picked him up from the airport because he was being such a doucher. So then the next day we did the obligatory "I'm sorry"'s and then I went over to his house. We had sex, and then he was weird so I left again.
The next day, we broke up over the phone. It was hard.
It was friendly though, and we vowed to continue to be friends and agreed that he would still help me with my health stuff (taking me to biopsies, etc...).
So we talked every day for a couple weeks, and he took me to a biopsy. We talked and hashed shit out (we agreed not to have sex, and tied up some other loose ends) and I actually felt pretty good about everything. It was hard, don't get me wrong...I just wasn't devastated. I was okay.
The day of the biopsy it was weird. He was staring at me and playing with my hair and walking with his hand on my butt. I could tell something was up.
Then I was at pool last week and Ryan texted me saying he was sad. When I asked him why, he said "I'm an idiot, I let a good thing go, but oh well" and when I responded by saying we both tried as hard as we could have, he said "I could have tried harder", it was confusing and odd. I asked him if we could talk about it in person and he said "some other time maybe".
The next day I asked him to go on a walk with me since it was really nice outside. We went hiking on a trail out at rockbridge park. He was talking about how attractive I looked and we were kind of flirting, and at one point my ass crack was hanging out when I was sitting on a cliff, and I said "sorry my ass is hanging out, don't look" and he said "I like looking at it". It was strange. I eventually got up enough courage to confront him about the confusing texts. I told him it seemed like mixed messages. He said he's just confused, that he didn't know what he wanted and wouldn't elaborate any more than that.
Yesterday I went to his house and we had sex...yeah...the sex we agreed not to have? I guess we were both just feeling weak and horny...so, we did. It was amazing sex, funny enough. I gave him a back massage and we had sex again. It was even more amazing the second time. Then we watched the Oscars and I went home. It was confusing.
Today I was thinking about it a lot, and he called me and I kind of blurted it out all at once. He was frustratingly clueless about everything. He said "you want me to tell you how I feel, so I told you that I'm wondering if I made the right decision, and now you're saying it's confusing you, so I just won't tell you how I feel I guess" and when I asked him what we're doing he played stupid "what do you mean, what are we doing?" I was like....um, you're sending me mixed messages. "What mixed messages?!" he was seriously flabbergasted. Eventually the conversation went sour. We were screaming at each other, I had a panic attack, and he got pissed and said he just wanted to be friends and never talk to each other. It was painful and frustrating. He said he regretted having sex "if this is what's going to happen"...like it was my fucking fault that we were arguing! He is completely deluded about his role in his own actions...he always has been. He also kept saying..."I don't know what to say...I have a lot going on right now, soooo" like because he has a lot going on right now I'm not allowed to ask questions or have expectations.
I don't know why I'm putting up with this. I'm pathetic!!!! Am I so self conscious that I'm willing to accept any affection from Ryan, no matter how fucking terrible, rather than none? Am I at that low of a point now? Really?! I am not this woman. I deserve more than this. I deserve love and affection and I fucking deserve more than the scraps of affection and confusion Ryan is able/willing to give me right now. I need to make it clear that he is not allowed to touch me.
Not allowed to touch me or tell me he likes seeing my butt crack. Seriously.
What the fucking fuck?
29.1.12
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?
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?
26.1.12
A complaint of epic proportions. You don't actually have to read it, it's more of a GODIHAVETOGETTHISOUTOFMEORIWILLEXPLODE type of post.
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.
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.
17.1.12
Can I borrow your machete?
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?
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?
31.12.11
Things falling all around me. Into or out of place.
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.
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.
18.12.11
Feelings are like assholes...
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.
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.
4.11.11
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.
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.
30.6.11
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.
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.
13.4.11
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.
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.
29.3.11
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.
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.
28.2.11
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.
3.2.11
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?
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?
17.1.11
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.
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.
14.1.11
What I want.
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
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
9.9.10
Not a rave:
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.
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.
31.8.10
Numb
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.
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.
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