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.

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.

Engulfed, Enclosed, Enveloped, In Rapture.

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

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

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

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

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

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

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



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

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

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

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

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

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

Fin.

The morning After...

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


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

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

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

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

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

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

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

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

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

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


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

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

<3

Home is where the heart...dies.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I was completely alone now.

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


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

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

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

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

Whew. That was a long one.

stop talking... that hole is getting huge.

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

ANYWAY OFF THE SOAPBOX.


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

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

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

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

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

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

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

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

HOME.

Take a picture it lasts longer.

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

The picture on the wall is crooked...

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

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



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

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

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

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

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

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

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

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

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

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

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

THAT's all for tonight.

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

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

I interrupt my epic story for this announcement.

In the hospital again.
A disaster.

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

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

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

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

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

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

I'm sad.

And it goes on and on and on and on.

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

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

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

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

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

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

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

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

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

That's all for today.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

The rest, dears, is for later.

In the worst way.

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

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

Anooyeeed.
Annnooyed.
Annnnnoooooyyyyannnnceeee.

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

Heart...ATTACK.

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

fuck

I'm feeling terrible.
just horrible.

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

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

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

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

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

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

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

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

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


I hope I can go home tomorrow.

<3 <3 <3

Here today, here tomorrow.

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

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

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

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

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

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

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

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

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

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

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


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


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

To whom it may concern...

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

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

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

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

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

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

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

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

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

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

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

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

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

hahaha.

I'm not too bitter. Hahaha.

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

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

Wantonly... yep.

I was...
Terribly worried for no reason.

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

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

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

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

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

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

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

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


They liked me after all.

Wonderful!



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

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

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

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

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

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

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

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

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

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