you're living louder.. let me hear you.

this is for the torn, the damned, and the shattered. in other words… this one is for the beautiful. break me. break me into a million pieces. chew me up and spit me out. i won’t mind at all. i’ll laugh from in between your teeth with a broken back. the human race is so concentrated on and fascinated by perfection, smoothness, and wholeness… and i will never understand why. broken is beauty. just because you are bruised and broken, does not mean you are down and out. you are still you. a shattered you, is still you in different pieces scattered around on the tile floor. i see it as opportunity. the chance to rebuild. you see, you can put yourself together again in whatever which way you would like. in the end… you are back together. thought out and admired piece by piece. you are a beautiful mosaic. a combination of tragedy, happiness, mindfulness, and memory all molded together to create YOU. to them you are just another broken heart; but to me, you are a piece of art. remember that. the same goes for scars. i have learned to love them. anyone can have smooth porcelain skin or a seemless heart… but there is not a soul in the entire universe that has the same scars as you. many people have smooth clear skin. how boring! i enjoy the things that make you different and unique. how boring it must be to be strong all the time. to be a fragile piece of glass shows that you have something to break…and having scars shows that you have chances to take. if your soul is like a canvas, then that must mean that scars are the lines in which we see ourselves drawn, and in my eyes… there is not a single negative notion or thought in that. if you’ve been hurt…keep your head up. that means you’re alive. laugh at the ones who walk in between four walls and straight lines. while they cash in cheap smiles… you are living. you are feeling. you are going through hell to shake the devil’s hand so when you come back up for air later you’ll have a story to tell; when all the “perfected” have is a soul to sell. don’t be afraid of getting kicked to the dirt sometimes. from the dirt; a flower shall grow.

Kristen.

yeah, ink may stain my skin
and my jeans may all be ripped.
i’m not perfect
but i’m perfect for you

there’s no guarantee
that this will be easy.
but wings aren’t what you need,
believe me.
no, i’m not an angel,
i’m just me…
but i will love you endlessly.
wings aren’t what you need,

you need me

R.I.P happiness

we all know nothing can last forever.. or even start properly in the cases of things that actually matter.

forever is only a perception of lasting that needs to be shared. it means nothing if it isn't shared.. and rarely... no, never can someone's forever match another's. and therefore the concept of forever is just a concept. the idea of consistency in anything is make believe. it doesn't happen.. so get used to it.

forever can only be a string of moments that seem to never end. one way or the other, it always ends. either through one side giving up in the belief of a concept, or the belief never being there in the first place and that word being a concept of overactive imagination and well constructed lies.

but it's fun.

the kind of fun a roller coaster would be that smashes your chest against an awkwardly out reached pole after about a minute. it is fun.. great fun. if you think too much about the inevitable, about the pole coming towards you then you don't enjoy the ride.

you might as well, it is the only and last one you will get.

it's inevitable.. get going. enjoy it. love the forever whilst it is there, because i can guarantee you it won't last long.

oh.. and awkwardly out reached poles hurt.

Life doesn't feel like ever playing fair, so play dirty.

well today was a fucking waste of time. does anyone else ever think the day would have been more productive if they indulged in a coma? yeah.. that bad.

FRESH.

pre-flight entertainment

Superted! Why is superted on in the airport?
I know it is early.. But, cartoons? 90's cartoons?
Suspicious? Sure.

Why did the owner throw away a super teddy bear? He showed them! Because little did they know that this bear was super!!
Wait, didn't he get sprinkled on my some tramp man? Which.. Retrospectively, wouldn't have happened if he wasn't discarded. So, in a way, the hardships of early life can formulate opportunities and orchestrate your character in later life. Has a thesis ever been written on superted? Hmmm.

Also...
I can understand the archetype of the young hero in the narrative story structure. I can understand the miser. The heroin, yeah. What I can't understand, is the archetype of the gay thing that always falls apart?! How did that enter our cultural consciousness??! Tex. C3PO. Erm.. I'm sure there are others.. But 2 is more than enough.. Surely?

Ridiculous carry on.
Flight time.

"We have before us the glorious opportunity to inject a new dimension of love into the veins of our civilization"

...too true.

blah blah blah

i miss Frankie...

i will be alone. for keeps.

...

i love it when tv shows subtitle mexican people speaking english. all the subtitles might as well be saying "i'm a fucking retard" instead of subtitling what they are saying.

I was brought to tears when i read the spoon theory – first by shame for not having understood when my girl first got diagnosed, and then in empathy for Frankie. While I’ve witnessed the pain of Lupus – and even helped nurse her during some of the painful moments – I have NO IDEA of the pain, discomfort, depression, sadness, et al that she feels every single day! I have seriously let her down, and all i can do is learn and understand and be what she needs. To be on her side, and fight in her corner when she cannot.

The Spoon Theory.

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.

we make plans. lupus laughs.

Definitely the life of a 20-something with Lupus

My day consisted of lying in bed, sleeping. I am happy that I was actually able to sleep. I woke up this morning and started to give my blood back. When my tubes were clear, I began to disconnect myself from the machine...but I didn't feel well. I thought perhaps I had miscalculated and taken off too much fluid. I looked at the numbers I had entered into my machine as well as my dialysis logs. They both looked fine. While still connected to my machine, I stood on my nearby scale. My weight was perfectly fine and I hadn't dried myself out. I resumed disconnecting myself and pulling my needles.

I didn't feel well. It had nothing to do with being too dry. My stomach hurt. My body hurt. I felt exhausted. After clotting my arm off, I got up, brushed my teeth and washed my face, exactly as I would on any Saturday morning. I tried to force it. No matter how often up Lupies try to force ourselves to do something, it's important to realize that if Lupus isn't having it...trust me. Lupus is NOT having it. My body was weak, my stomach felt crampy. I had to listen to myself. No work for me today.

I often do NOT listen to my body. I think if I did, I'd never go anywhere. But sometimes, you just have to listen to your body. I had everything all planned for today. I was going to go to work during the day and be home by 4:30. I was going to study for a few hours as I have two tests next week, then leave my house at around 6:50pm. Today is my friend's birthday, and we were all invited out for dinner. It was a really cool looking restaurant - lots of healthy, organic food.

We make plans.

Lupus laughs.

Trentemoller - Miss You

3.45. no sleep.

I wish I could do better by you,

'cause that's what you deserve

You sacrifice so much of your life

In order for this to work.

While I'm off chasing my own dreams

Sailing around the world

Please know that I'm yours to keep

My beautiful girl

When you cry a piece of my heart dies

Knowing that I may have been the cause

If you were to leave

Fulfill someone else's dreams

I think I might totally be lost

You don't ask for no diamond rings no delicate string of pearls

That's why I wrote this song to sing

My beautiful girl

Tom Petty says it best.. but Derek Sanders comes pretty close...

'And as this current moves slow for me

This much you must know we'll meet again

And I'll have you know I'm scared to death'

'Tell me once again

That you'll love me to the death

And should I die, you swear that you will come for me

As I fade away, you reach out your hand

(And please don't let me go)'

'And I'll be here by the ocean

Just waiting for proof that there's sunsets and silhouette dreams

All my sand castles fall like the ashes of cigarettes

And every waves drags me to sea

I could stand here for hours

Just to ask God the question, "Is everyone here make-believe?"

With a tear in His voice, He said, "Son, that's the question."

Does this deafening silence mean nothing to no one but me?'

'Another night she spends alone

Without his touch her skin's so cold'

'Call my name if you're afraid

I'm just a kiss away'

'I look back to the one and only summer time

And my girl was the envy of every friend of mine

She slept safely in my arms

We were so young and invincible'

'Her smile with the wind blowing through her hair

Was so contagious in the air

So satisfying and I'm still smiling

And you're still out of my reach

And you're still all of the things

That I want in my life'

'The first kiss stole the breath from my lips

Why did the last one tare us apart?'

'Baby, I sorely miss the vibrant gleam that's in your eyes

I'll write a song about it

And maybe if the melody's just right

I hope tonight it will find you

It will remind you'

...wow

just hearing her breathe makes me melt... i am more in love than anyone has ever been ever, FACT.

and what's more. i love it :)

she'll be home soon..

under a brighter moon.

raindrops tear us apart.. breath on my window pain, i S P E L L your name...

keep waiting without fading out, did we happen a day too soon?

just saying, if we wait it out.. we'll be under a brighter moon.

i can't wait.

i'm spelling your name, and i trace a kiss....

don't want to be a thorn in your side...

Betterman I am since I

Come into contact with you

And you taught so many things about myself

and you know this is true

but now we are apart and its all my fault

cos you know I need to be alone

Don't know myself

so how can I share me with you girl or anyone

Don't want to be a thorn in your side

good woman

Always be the one

to make you cry

Don't wanna be that guy

Good woman

cos you deserve everything

and I got nothing so leave me

and i'll go away better off I stay

Far from you,

because you are beautiful

BEAUTIFUL WOMAN

Now typical man

I am because you think

I want my cake and eat it too

Cos say I can't be in a relationship

but I still feel for you

Cos you are the best woman

This old man has ever met

You taught me about my soul

you shared with me your magic

Don't want to be a thorn in your side

good woman

Always be the one

to make you cry

Don't wanna be that guy

Good woman

cos you deserve everything

and I got nothing so leave me

and i'll go away better off I stay

Far from you,

because you are beautiful

Betterman I am since I

Come into contact with you

And you taught

so many things about myself

and you know this is true

but now we are apart and its all my fault

cos you know I need to be alone

Don't know myself

so how can I share me with you girl

or anyone

Cause you are...... my angel.

x 9 days till x

i am so fuming with the people i chose to call friends. they have been with me through the pain, the crying, the mood swings and everything.. but tonight.. tonight they were pure 'cee you enn tee's' as my girl would say... so cute'ly. i can understand them wanting me to socialise.. but they have always been so understanding, i dont know what happened to that tonight.

not only that... but i want to show the girl i love, the girl i WILL get to marry me, that i will be there... they took that away from me. i cooked.. i cleaned.. i even smiled and played nice, when i had my girl on sporadic words. and then they decided i didn't need to. i do need to. i need to show her how i feel because she doesn't believe it like she did. and actually fuck that! she doesn't need to believe it.. because it will always be there.. i will always be there. and tonight i couldn't do anything to stop the destruction of her trust in me :(

i feel so incredibly sad.. but that really doesn't matter. she feels alone... and that kills me.

i don't want to write anymore. i have let her down... and i could never make it up to her...

i do not deserve the girl the entire world wants. i don't care how big my friends are.. i should have hit them harder.

i hope my eyes show her what i can't :(

i miss my frankie so much. i am so lost without you buubuu.

let's disappear. i want our life. x

just the girl.

'cause she's bittersweet

She knocks me off of my feet

And I can't help myself

I don't want anyone else

She's a mystery

She's too much for me

But I keep comin' back for more

She's just the girl I'm lookin' for