Upside

"I want to turn the whole thing upside down.

I'll find the things they say just can't be found.

I'll share this love I find with everyone."

--Jack Johnson "Upside Down"

Dear Diary,

It took me a long time to realize this. Maybe it took me a long time to see. 

I mean really see, not just with my eyes. Not just see it because it's right in front of me, but really see with everything I have and everything that I am.

It's funny, you know. Sometimes the best messages, don't come when your expecting them.

They're not written in a book, or even given by a person.

Sometimes the best messages are just there. They are just there waiting to be found, and sometimes if you look hard enough, you'll find out that they were right in front of you the whole time.

I never really thought myself to be someone that is closed minded. I always thought that I did see the world around me, but I'm not sure that's true. I think I'm just beginning to see what's right in front of me.

You know, there really is an upside to everything. The world isn't black in white. It's not even grey. It's just a brilliant shade of every color. It's a rainbow, and you never know what to expect.

I think we forget that. We constantly want to see the bad in everything. We constantly want everything to be in black and white. To fall into these neat little categories that we construct for ourselves. But, that's not life. Life doesn't fall into a category of good or bad. It's everything in between that. If we constantly try to put a label on everything, were not really seeing. It's like we are blind in a place where there's so much to see. Where everything everything exists if we just wake up. If we just open our eyes and see.

If we just constantly grasp to the upside of everything, despite what life tells us, then we are really seeing. We are really seeing how beautiful everything can be.

Life was never meant to be easy, but it's not supposed to be hard either.

It's just supposed to be.

If we never really see that, are we ever really living?

I don't know if any of this makes sense, but maybe it will.

Just do me a favor, and open your eyes.

Love Forever and Always,

Me

Be The Best You

"I've got bruises on my hands and knees,

And a list of failures in between.

Always dirty, I am never clean,

Music is what you hear, and not what you see.

There's something wrong. This isn't right.

I make the rules or I'm gone tonight.

I signed the line, but I didn't lose control.

They'll tell you lies right to your eyes.

Before you know, they'll suck you dry."

-- Anarbor "Always Dirty, Never Clean"

Dear Diary,

There's a lot going on in my mind lately. Let's face it, there's always a lot going on in my mind. 

I'm really not sure what direction I'm going to go with this conversation right now.

But, sometimes I just don't get it, diary.

Sometimes I just don't get the world or the people in it. It seems so easy to lose yourself in everything. In things that just don't matter at all. It seems that it doesn't take much for people to forget that they are surrounded by other human beings. Human beings who they should be helping.

You can only get things done right if you do them yourself.

I've heard it many times. You've heard it many times. We've all heard in many times.

I don't want to believe that. I don't want to believe that I can only get things done if I do them myself. And I shouldn't have to believe that.

But that's the thing about life, isn't it, diary?

 Reality isn't always what you want.

It bothers me though. It bothers me that people need to benefit in order to do something for someone else. And all I can ask is why? Why isn't it good enough to just help someone to help them? Why don't other people feel the need to help, even if it's just with something simple?

Isn't that what we were all put here to do? To help each other? To be the best people we can be?

Sometimes I feel like the world is a complete mess, and no ones willing to help out.  A really good friend of mine once compared the world to a styrofoam cup. 

She couldn't have been anymore right.

We just keep picking at the cup, wearing it down. Tearing it apart. I wonder what is going to happen in the end.

Because what is really going to be left?

What is going to be left of this world in a few years if no one's willing to help anyone else? 

I don't know if I'll be around in the next few years. I'm not sure anyone truly does know, though. 

But even if we are going to be around or aren't going to be around,

Shouldn't we be scared?

Shouldn't we be scared of the world we are creating?

I don't know if this post is even making any sense. My guess is probably not, diary. 

It's just I really don't know how to explain it right now. I'm frustrated with people being unwilling to help other people out of the good of their hearts. I know there are good people out there, but I just don't understand why other people don't make those people their role models. 

I don't get why you wouldn't want to be the best person you could be.

But maybe I'm just being naive.

All I know is that I try to be a good person. I really try and it bothers me to think that sometimes I'm not the best person that I can be. It bothers me to think that some people may think I'm not a good person. But, at least I'm trying because it matters to me.

The quality of person that I am matters to me because in the end the only thing that is going to matter is how people remember me. It's going to matter what kind of person I was and if I lived my life in a way that honored and inspired my family, my friends, and the people I've came in contact with. Maybe even the people that I didn't come in contact with. 

It's going to matter who I helped just because I should, not because it would benefit me.

It's going to matter if I was a good person or not.

They are the things that are going to matter to me. 

Sometimes I wonder what is going to matter to other people, and I would never wish for someone to look back on their life and be disappointed. 

I guess what I'm trying to say, diary,  is that life should be about more than the things that benefit you. 

It should be about the things you do that benefit other people.

Because trust me, those things will benefit you to.

Even if you don't realize it.

Love Forever and Always,

Me

Positivity and Projects

"What about now? What about today?

What if you're making me all that I was meant to be?

What if our love never went away?

What if it's lost behind words we could never find?

Baby, before it's too late, what about now?

 The sun is breaking in your eyes to start a new day.

This broken heart can still survive with a touch of your grace.

Shadows fade into light.

I am by your side, where love will find you."

--Daughtry "What About Now"

Dear Diary,

I'm so sorry. I'm so sorry I have been neglecting you lately. It was never meant to be this way, but I have been so busy lately. I know this is no excuse. I am going to try to remember to write more. 

A while ago, I told you about this project I was taking on. A project that meant a lot to me, that still means a lot to me. I didn't feel like explaining it to you then. Maybe I felt that I would jinx it, but I think it is time. So here it goes,

I am trying to change people's lives.

I am trying to help in a way that I know I can, 

and by doing this, I think I'm also helping myself.

There are millions of sick people out there. Millions of people that suffer from so many different illnesses and diseases. This is a fact that most people recognize, but what most people forget is that all these people have to learn to cope. They have to learn to accept their diseases, and keep going. They have to take on a whole new number of battles, and some of these battles are going to be with themselves. 

That's where my project comes in. I'm trying to create a non-profit organization called Pages of Positivity. My mission is simple, yet really complicated. I know that's a contradiction, but it's the truth. I'm going to try and keep people positive through journals that are filled with only positive things. Nothing negative is allowed, but this is hard. So many people are set on thinking negative, thinking that the glass is half empty. They forget that they are perfectly capable of changing that attitude. They forget that with a little effort, you can bring your own sunshine with you wherever you go.
 I intend to change this.

With these notebooks, I truly believe that people will have an outlet and a reminder to think of all the good things in life, rather than dwell on bad. I can honestly tell you, diary, that my own personal positivity journal has helped me. When you have a bad day, or something happens that you're not happy with, you can simply open your journal and remind yourself that you will get through this. That you will be okay. That you do matter. And that there are still good things in this world.

I truly believe in this project.

I truly believe it can help, and that's all I can ask for.

If I can help one person with this, everything will be worth it.

Everybody could use a little love, inspiration, motivation, and positivity in their lives.

Love Forever & Always,

Me 

What Doesn't Kill You

"What doesn't kill you makes you stronger,

Stand a little taller,

Doesn't mean I'm lonely when I'm alone.

What doesn't kill you makes a fighter,

Footsteps even lighter,

Doesn't mean I'm over because you're gone.

What doesn't kill you makes you stronger, stronger,

Just me, myself, and I,

What doesn't kill you makes you stronger,

Stand a little taller."

--Kelly Clarkson "What Doesn't Kill You (Stronger)"

Dear Diary,

I've been thinking a lot lately. I've been thinking about all kinds of things. Mostly, I've been thinking about the kind of person I am. About how I got to be this person. My life is not easy. It never really has been, and It probably never will be. I've learned to accept this though. I've learned that my life may not be a walk in the park, but in a way, I'm glad it isn't. 

My diseases have been a part of me for years. They play a big part in who I am today, and that may be hard for a lot of people to understand, but I don't think I would be the person I am today if it wasn't for them.

They have shown me that despite all the things in this world that are hard, that despite everything I will have to go through, I can make it through. They have shown me that life doesn't end when you get sick, it really just begins a new chapter. It just begins a new part in your life.

A lot of people say that what doesn't kill you makes you stronger, and I believe this. The struggles I've had to deal with in life made me strong. They've given me all the will in the world to fight, but mostly they've given me a reason to live, to keep fighting until it's my time to go. They've helped me to see this world in a different light, to see the beauty and goodness that surrounds us every single day. I think a lot of people overlook that in this world. They get stuck in this place of negativity that they just can't escape and they forget to realize that the sun comes up every morning. They forget that dealing with issues in life isn't a reason to close out the world, but more a reason to open up your eyes to it. I've been told many times that I am naive, that I don't see people for who they really are, that I don't see the evil in some people, but I don't believe that. I see what's going on around me everyday. I know that people do horrible things, but that doesn't mean you should become blind to all good because if you look hard enough, you'll see it. You'll see the good, the beauty, the love that surrounds us every single day, in so many people.

One day, these diseases may take my life, and I think I'm starting to be okay with that. That's life, and maybe a lot of people think that's not fair, but one day I'm going to be needed somewhere else, maybe sooner than people wanted, but that doesn't mean I stopped fighting. It just means that I had the strength to make it through that fight, and that now it's time for me to move on. My diseases have given me the strength to know that God will take care of me, and that things will work out the way that they are supposed to,
That everything will fall into place,
and that there is always a reason for everything.
 

Love Forever & Always,

Me 

Inspiration

"Your voice was the soundtrack of my summer.

Do you know you're unlike any other?

You'll always be my thunder, and I said

Your eyes are the brightest of all the colors.

I don't wanna ever love another.

You'll always be my thunder.

So, bring on the rain

And bring on the thunder, and I said

Your voice was the soundtrack of my summer.

Do you know you're unlike any other?

 You'll always be my thunder."

--Boys Like Girls "Thunder"

Dear Diary,

I haven't talked to you much lately. I haven't written to you, and I'm sorry, diary. Today, I'm going to tell you something really important, though. It may not be as important to some people, but it's touched my life. It's really something so simple. Just a few words put together by people, but in a way it's so much more than that. It'll always be so much more than that to me.

They tell me,

You are inspiring. You inspire me.

It's funny how a few words can hold so much meaning. How a few words can make you feel like you finally accomplished what you've been trying to from the beginning, but they do. They mean everything to me. 

When I started writing to you, diary, I thought that maybe I could help. I thought that maybe I could make a difference, even if it was just in one person's life. I needed to make my mark on this world, but I think I've finally realized that I don't have to make my mark on the whole world. The world is a big place, and maybe I just need to make my mark on my little corner of the world, on the people in my life. It's not about inspiring billions of people, or changing the whole world. I probably won't ever inspire or change the whole world, and that's okay. If I have inspired one person in this world, if I have changed a small portion of this world, than that's enough. 

That will always be enough.
There is something though, something these people telling me this don't know.  It's something they may overlook, something they may not find important, but it is. It is important to me. 
They are my inspiration.
I'm not even sure they realize this, diary, but it's the truth.
And that, is one of the greatest gifts anyone can give me. 
That, right there, is amazing and important,
Amazing and important to me.

Love Forever and Always,

Me

 

Hatred, Violence, and Love

"But if you only have love for your own race,
Then you only leave space to discriminate
And to discriminate only generates hate
And when you hate then you are bound to get irate, yeah.
Madness is what you demonstrate
And that's exactly how anger works and operates.
Man, you got to have love just to set it straight.
Take control of your mind and meditate.
Let your soul gravitate to the love, y'all, y'all."
--Black Eyed Peas "Where is the Love?"

Dear Diary,

Murders. Gangs. Theft. Assault. Rape. Bullying. I see and hear about it pretty much everyday. It's all over the news. It's talked about all the time. It's all over everything and you can't escape it. You can't escape the reality that this stuff is happening. You can't escape all the violence and the hatred, and I don't get it. I don't get why people have to do horrible things to other people, to animals, to everything.
We have so much hatred in this world, diary.
It's sad. It's sad that so many people think murdering somebody is no big deal. It's sad that so many people give in to their hatred, and I sit here and wonder why any of it matters.
Does it really matter what color you are?
Does it really matter where you live?
Does it really matter that so and so hurt your feelings or stole your girl or boy friend?
Does any of it really matter at all?
I don't get why it is so easy for some people to just pull out a gun and shoot someone. What is doing that going to prove? It doesn't make sense.
There are so many good things in this world, diary.There is so much to love, if we just take a second to look and see. I'm starting to realize this more and more.
Life isn't about hating things. It's not about hurting people. It's not about hurting anything.
It's about finding the beauty and love that's all around us.
It's about seeing the world for what it really is, and I don't think the world is an evil place.
And I don't think people were ever meant to have so much hate.
Somewhere along the way, I think some people just get lost, and have a hard time finding their way back. And in those moments, that's when we need love the most.
We just need to take a step back and look at the world around us, and after a while, maybe it wouldn't be so hard to see the beauty and love in people, in the world.
It is so easy to hate.
But, we need to realize, that it's just as easy to love.
So, why don't we just love?


Love Forever and Always,
Me

Unexpected Places

"I hope the days come easy and the moments pass slow
And each road leads you where you want to go.
And if you're faced with the choice and you have to choose,
I hope you choose the one that means the most to you.
And if one door opens to another door closed,
I hope you keep walkin' til you find the window.
If it's cold outside, show the world the warmth of your smile,
But more than anything, more than anything,
My wish for you is that this life becomes all that you want it to.
Your dreams stay big, Your worries stay small.
You never need to carry more than you can hold.
And while you're out there gettin' where you're gettin' to
I hope you know that somebody loves you,
And wants the same things too."
--Rascal Flatts "My Wish"


Dear Diary,

Many people say that sometimes good things come when you're least expecting them too. They say that you can find good things in unexpected places. Basically, they try to tell us that if we just live and not worry, our lives will fall into place. Everything will work out how it is supposed to.
I truly believe that this is the truth.
Nobody expects certain things to happen to them, but sometimes those things do happen.
And sometimes those things change you.
When people learn that I am sick, they usually feel bad. They'll tell me how much that sucks and how much they pity me. When I was younger, I did that to.
Things have changed though. Now, I am the sick one, but the thing I've realized is that becoming sick isn't the worst thing that can happen. In a way, being sick has taught me so much more than having a normal life could of.
My life doesn't "suck." In fact, my life is pretty good. My life has always been pretty good. I have all the support and love that I could ever ask for. I have a house and clothes.
I have friends and a family, diary.
My life doesn't suck because I'm sick.
And it may sound weird, but in a way my illnesses have given me something that I would never have gotten if I didn't have them. They gave me the ability to realize that life is about so much more than what we typically see it to be. They gave me the motivation to help other people. They gave me the motivation to become a better person, but mostly it gave me the ability to appreciate and be grateful for things in my life.
Yes, my sicknesses have changed me, but I'm okay with that.
Sometimes good things come from unexpected places.
Sometimes good things come from our pain and problems.
Sometimes things happen for a reason.


Love Forever & Always,
Me

Absences and Projects

"Maybe you and I can't do great things.
We may not change the world in one day.
But, we can still change some things today
In our small way.
Just a little time it takes.
What a difference just a smile can make, you'll see
Love is all we need."
--Michael Jackson "In Our Small Way"

Dear Diary,

I'm sorry I haven't written in a while. I've been busy. You see, sometimes being sick is a full time job. Each day is like a it's own little mystery in a way. I never truly know exactly what's going to happen. I've, also, been busy with a new project, diary. I'm really excited about it.
I've told you before that I dream of making a difference. That I dream of changing the world. That I dream of helping people.
I've decided that it's time to make my dreams a reality. I may not change the world. I may not make a difference in everybody's life, but that's not going to stop me from trying. If I can help one person, if I can motivate and inspire just one single person, it'll be worth it.
My new project is simple, but I truly believe it will help some people. Maybe I'll explain it to you more one day, diary.
My goal with it is to become a non-profit organization.
Some people told me it's hard to do that. I've researched it, and it is complicated.
It saddens me that they make it so complicated to do something good for society. It saddens me that the world puts a price on helping people.
But, I'm not going to let this discourage me. I'm determined and motivated. I'm not sure I ever felt this strongly about anything ever.
Wish me luck, diary.


Love Forever and Always,
Me

Laugh or Cry

"When I've had enough, a little voice inside,
It says "You've got to be tough,
You've got to take it in stride."
Sometimes I'm foolish. I let it get the best of me.
At least, I know that my mistakes
are my responsibility.
and I just have to laugh to keep from crying.
I just have to laugh to keep from crying."
--Madonna "Laugh to Keep From Crying"

Dear Diary,

I've learned something very important in the last few years.
Nobody's ever going to have the perfect life. Nobody's ever going to have a completely easy life because life isn't easy. Life isn't supposed to be easy. Everybody gets thrown curveballs sometimes. Everybody will have to go through some "hard times" and days that they just want to give up. Life isn't always going to be a piece of cake. There will be struggles, hardships, and disappointments.
But the thing is, you can either laugh or you can cry.
You can either be happy despite your problems, or you can be sad and wallow in them.
I choose to laugh, diary.
I am sick. I'll probably always be sick. I'll probably always have complications that I need to deal with. There isn't a cure, but that's just how it is. I'm not change that, but I'm also not going to let that stop me from living my life. I choose to be happy and laugh. I choose to deal with the hand I've been given, rather than letting that hand deal with me.
There's no point in being upset over something that I can't fix. Being depressed or upset isn't going to change the situation that I'm in. I'm not saying that I don't cry or get upset sometimes. I do, but everybody does. I just choose not to keep crying. I choose to be happy. I don't want people to feel pity for me and think of me as this sad sick girl.
I rather not wallow in my problems.
I may not be able to control everything about my life, but that's okay.
I'm rather not cry.
I rather laugh.
I choose to laugh.


Love Forever& Always,
Me

Love and Support

"Oh, why you look so sad? Tears are in your eyes.
Come on and come to me now. Don't be ashamed to cry.
Let me see you through 'cause I've seen the dark side too.
When night falls on you, you don't know what to do.
Nothing you confess could make me love you less.
I'll stand by you. I'll stand by you.
Won't let nobody hurt you. I'll stand by you."
--Glee Cast "I'll Stand By You"

Dear Diary,

I've learned a lot in the past few years. I learned strength. I've learned pain. I've learned who I am. I've learned so many things, but most importantly I learned how important it is to have a support system. You need people standing behind you. People that can pick you up when you fall. People that love you despite everything.
I've always valued independence. In a way, I still do, but I've also learned that being dependent on people is okay. When I got sick, I needed everyone so much more than before. I needed extra help because I couldn't do it on my own. I still can't do it on my own, and that is okay.
It is okay to need someone.
It is okay to rely on people.
I am so lucky, diary.
I have the most amazing family anybody could ever ask for.
I have some really great friends.
Without my support system, without help from my family and friends, I'm not sure I would be here today. They give me strength. They give me a shoulder to cry on. They give me support. They lend me a listening ear when I need it, but most importantly, they give me love.
I am loved, diary.
And that right there is more than anything I could ever ask for.


Love Forever & Always,
Me

Harsh Words and Disappointment

" He was such a nice boy.
The quiet one with good intentions.
He was down for his brother, respectful to his mother
A good boy, but good don't get attention.
One kid with a promise, the brightest kid in school.
He's not a fool.
Reading books about science and smart stuff
It's not enough, no
'cause smart don't make you cool, whoa."
--Kelly Rowland "Stole"

Dear Diary,

There is something that has been bothering me for a long time. Almost every day, I see or hear of a case of bullying. He's ugly. She's ugly. I would never leave my house if I had a tube like that. She's a whore. He's a dick. She just wants attention and he is just a loser.
It makes me sad, diary.
It disappoints me to no end.
We are supposed to be a civilized society. Yet, we degrade and judge constantly. We talk about ending bullying. We talk about peace. Yet, the disrespect and maliciousness prevails.
It bothers me that we are so quick to say something mean to someone else, rather than to tell them everything we love about them. Since I became sick, I've had tubes put in my body. I have gained weight from medicine and fluid. I have become more pale.
I will be judged for this.
Recently, I posted a picture of myself and two other girls who have or have had tubes in their nose at one point on a most beautiful teen contest. We got comments with people saying we just want sympathy votes or we are not beautiful. I did not post those pictures to get sympathy. I posted them so that people realize that beauty doesn't just come from the outside. Beauty isn't about how somebody looks, acts, or talks. Beauty is about who you are, and everybody is beautiful in their own way.
It saddens me to think that people in today's world still have a shallow and ignorant way of thinking. It saddens me that people cannot see the beauty that lies with every human being.
It saddens me that people cannot see the beauty in the world.
It bothers me that people are so quick to bully someone else. They are so quick to call out somebody's insecurities. They are so quick to ridicule.
They don't think about how their words affect other people.
They don't realize that people are dying because of bullying.
People are killing themselves.
People are killing other people.
I wonder how many people have to die before we realize that we need to stop the judging. We need to stop the ridicule. We need to stop the hate because if we don't people are going to die.
Maybe if we all spread love, diary, the world would be a better place.
Maybe if we all took a second to realize the beauty in other people, we wouldn't be so quick to call out their insecurities.

Everyone is beautiful.
Everyone's life matters.
Nobody deserves harsh words.

Love Forever & Always,
Me

Penny For Your Thoughts

"A penny for my thoughts, oh no, I'll sell 'em for a dollar.
They're worth so much more after I'm a goner.
And maybe then you'll hear the words I been singing.
Funny, when you're dead people start listening."
--The Band Perry "If I Die Young"

Dear Diary,

I've been thinking about this a lot lately. I've been thinking about how people don't hear you as well, until you're not here to be heard anymore. It's funny how when you die suddenly everything you've stood for, everything you lectured about, and everything you wanted people to hear gets heard more. It's funny how it takes death for people to start to listen.
It makes me sad, diary.
It's sad to think that people have to die to make a difference.
It's sad to think that I won't be heard, that I won't be listened to, until I'm not here to talk anymore. It's sad to think that people are so blinded by everything else that they don't have time to listen. They don't have time to be bothered with messages from people, no matter how important that message is.
I can't change this, diary.
I can't change people if they don't want to change, but that isn't going to stop me from trying.
It isn't going to stop me from talking, from trying to make people listen. It isn't going to stop me from trying to make a difference because maybe someday, someone out there will listen.
It shouldn't stop anyone from talking, from spreading their stories, from spreading their messages.
I choose to be heard now, even if nobody wants to listen.
Because someday, maybe somebody will hear me.
Maybe somebody will spread my story.
Maybe somebody will spread my messages.
And maybe I won't be heard until I'm gone,
but at least I tried. At least I kept talking, kept writing.
At least my story, my words, my messages were put out there.


Love Forever & Always,
Me

Someday This Pain Will Be Useful

"After all this has passed, I still will remain.
After I've cried my last, there'll be beauty from pain.
Though it wont be today, someday I'll hope again.
And there'll be beauty from pain.
You will bring beauty from my pain.
My whole world is the pain inside me.
The best I can do is just get through the day.
When life before is only a memory,
I'll wonder why God lets me walk through this place.
And though I can't understand why this happened,
I know that I will when I look back someday.
And see how you've brought beauty from ashes.
And made me as gold purified through these flames."
--Superchick "Beauty From Pain"

Dear Diary,

Perfer et obdura, dolor hic tibi proderit olim.
Be patient and tough, someday this pain will be useful to you.
I read this quote today in a book I was reading. I've realized how much these words mean to me. I've always thought that we are only given as much as we can handle. I've always thought that there is a reason that I'm sick. I truly believe that one day all of the things that I go through, all of the pain I endure, and all of my struggles will be worth it.
One day everything is going to make sense,
even if I don't make it, diary.
Everybody was put here for a purpose, for a reason. This includes me.
I struggle all the time, but I'm starting to realize and understand that my illnesses are not a curse. In fact, maybe they are a blessing.
Maybe one day everything that I go through will be able to help someone else, even if my fight isn't enough someday. I may never understand the workings of the world. I may never understand why people are the way they are. I may never understand what my purpose in life is. But, maybe that right there is beauty in itself.
I don't think we were ever meant to understand the world. I don't think we were ever meant to understand hardship and disaster, but I do believe that one day hardships that we go through will make sense.
Perhaps, one day I will be able to help another person who is struggling due to the fact that I was once there. I was once in there place. I once filled their shoes. I once felt that pain.
I truly believe that one day I will be thankful for all that I endured. I believe that one day I will be able to make a difference in someone's life because of it.

Everything happens for a reason.
It's time to realize that because maybe
Beauty really does come from pain.
Because with out it we might never know strength.
We might never know love.
We might never know hope.
We might never know how to live.

Love Forever & Always,
ME

Who Am I?

"Don't lose it all in the blur of the stars.
Seeing is deceiving, Dreaming is believing.
It's okay not to be okay.
Sometimes it's hard to follow your heart.
Tears don't mean you're losing.
Everybody's bruising.
Just be true to who you are."
--Jessie J "Who You Are"

Dear Diary,

I've broken the silence and told you about some of my illnesses. Since then, I've been thinking a lot about who I am as a person. When I became sick, I learned a lot about life. I learned a lot about who I am. I learned about who I'm not. Mostly, I learned that it is very important to be true to yourself because it doesn't pay to be anything but.
I think about my past a lot. I think about all those times I've done things to "fit" in. I think of all those times I've tried to hide who I was because I wanted the boy, the popularity, and the friends. And then I think, what did those things get me? Why was it so important to be like everyone else? Why was it so important not to be myself?
I learned that these things aren't important because they aren't me.

I don't want to be someone else.
I'm not preppy. I'm not a jock. I'm not emo. I'm not a punk.
I'm just me, diary.

I'm the kind of girl who hates getting her picture taken, but likes to look at pictures. I'm the kind of girl who isn't embarrassed to tell her friends and family they love them. I'm the kind of girl that is afraid of boats and will freak out on elevators. I'm the kind of girl that will wear yoga pants and a t-shirt, but will also take two hours to dress up and get ready if I feel like it. I'm the kind of girl that likes playing video games, especially ones that involve zombie killing. I'm the kind of girl that watches too much television and movies, but also reads constantly. I'm the kind of girl that wears her hair in a pony, but also the kind of girl that will spend an hour trying out other hair styles. I'm the kind of girl that is so opinionated that I will argue endlessly about certain things, but also the kind of girl that is learning tact. I'm the kind of girl that has many insecurities, but also believes that everybody is pretty in their own way. I'm the kind of girl that isn't always nice, but really tries to be.
I'm the kind of girl who has a million ideas about how to change the world. The kind of girl that worries about the kid down the hall in the hospital that is having a hard time. The kind of girl that will lecture you about being mean or making fun of someone. The kind of girl that still has faith in people, in the world, despite all the horror stories on the news. The kind of girl that people think is naive for trying to see the good in people. The kind of girl that will fight for my life and the people in it.
Mostly, I'm the kind of girl that isn't going to be defined by the things I do or diseases I have, but rather the kind of person I am.
You see, I am not perfect. I'm not even close, and that's okay.
I don't want to be perfect.
I don't want to be anybody else.

I'm starting to realize that it's perfectly fine to be myself because, at the end of the day, it doesn't matter what other people think of me.
I'm not living for them and I'm not okay with being anything but myself.
I'm just me, diary.

Love Forever & Always,
Me

Purple Toes, Beating Hearts, and Mixed Up Nerves

Dear Diary,

I was around ten years old when I first heard anything about dysautonomia. It's weird how back then it didn't even seem like a big deal. I wasn't entirely sure what it meant back then and I wasn't seeing a doctor that specialized in it. Throughout my life, I have been diagnosed with viruses that have dysautonomic components and diseases that have dysautonomic components. It wasn't til years later that we finally looked into dysautonomia. I saw a few doctors and was diagnosed. Dysautonomia happens when your autonomic nervous system, which controls basically everything you don't have to think about to do, doesn't function properly. There are many different kinds of dysautonomias, but the one that I'm effected by the most is Postural Orthostatic Tachycardia Syndrome, which is usually just called POTS. With these diseases comes a whole array of weird symptoms. When I say weird, I mean it. You see, it wouldn't be weird for my feet to be extremely purple in color at times. It also wouldn't be weird for my heart rate to be about 120 laying down at rest and my blood pressure about 70/30. My heart beats fast, my blood pressure runs really low, and my temperature at normal is about 96 something. They are all part of dysautonomia. I also dehydrate quicker than most people and I don't tolerate extremely hot temperature very well. I can pass out if I stand up to quickly and it isn't strange for me to have "brain fog". My pupils dilate to the point that people think I'm high, when I'm most definitely not. Another weird thing about my dysautonomia is that I don't feel pain as another person might, which is kind of a good thing. My pain tolerance is extremely high to the point that sometimes doctors aren't sure whats wrong because I should be in more pain than I am. Digestive disorders are also a major symptom of dysautomia, and these are just some of the symptoms.
Some of these things used to scare me, especially when my brain would fog, diary.
It used to scare me to the point that I would think something was very wrong, especially during times of dysautomic crises when all these symptoms become exacerbated greatly.
I'm used to it now though.
It's strange to think that something so uncommon can become normal when you deal with it on a daily basis.
Another disease I have been dealing with is Reflex Neurovascular Dystrophy, or RND. This is a condition where your nerves don't always send the right signals to parts of your body. For instance, diary, I may break my finger and all my joints might start to hurt because the nerves are sending the pain everywhere. It mostly originates in my fingers, so if I hurt something or burn my fingers may ache the next day.
There are no known cures for these diseases.
In fact there isn't even a lot of research on these diseases yet.
You can treat the symptoms, diary, but every patient is a little different.
You basically have to experiment with different medicine.
And each medicine has its own side effects usually.
It can be very frustrating, diary.

Love Forever & Always,
ME

Paralysis and Other Things

Dear Diary,

Eating is a very important part of a person's life. Almost everything revolves around it. At a family gathering, people eat picnic foods. At a birthday, cake is a big hit. On a date, people go out to eat and a movie. Eating helps sustain life.
Eating is essential, or so I thought.

I have not eaten in over 365 days.
I have not eaten in over 1 year.
I physically cannot sustain life without assistance.

Three years ago, I was diagnosed with gastroparesis. My stomach is basically paralyzed. The nerves do not work. The muscles do not work. My stomach is essentially dead. Since then, I was diagnosed with CIP or Chronic Intestinal Pseudo-Obstruction. This basically means that my intestines are slow. The nerves don't work, so pseudo-obstructions are formed because the intestines don't move things through them. My muscles in my intestines work a little with a medicine, but without proper medicine they don't work fully. My digestive tract does not work properly.
I cannot eat, therefore, I cannot live without assistance, diary.
I eat through my veins. Every night I am hooked up to Total Paraenteral Nutrition. This goes through a Port, which is a medical device under my skin that contains a tube that goes directly into a major vein and continues to a place right before my heart.

This is my lifeline.
Without this, I would not be able to stay nourished.
Without this, I would die.

This lifeline can also end up being the death of me. There aren't many things in life that don't have risks or consequences. This is no exception. I have already suffered a blood clot and two blood infections due to central lines. It's weird to think that the only thing keeping you alive can also kill you, but this is my reality. My diseases can kill me, or my treatments can. Others have died from these complications.
I have another tube. It is called a GJ tube. It goes from outside my abdomen and into my stomache. Another tube connected goes to my jejunum. I use the jejunal tube to try to push formula into my intestines. I do not accept this kind of feed well. I cannot accept enough to survive on just this type of feeds. I barely accept anything at all. The g part of my tube allows me to drain if I need it. It's like throwing up without actually having to throw up. With these illnesses, that is a much needed relief. These diseases can cause severe nausea and vomiting almost around the clock. It can cause pain and many other symptoms.

Life isn't promised to people like me, diary. I fight to survive.
Because, in reality,
I cannot keep myself alive, and someday my treatments may not be able to either.


Love Forever & Always,
Me

It's Time

"Do you see me? Do you care?
You talk about me, like I'm not there.
Don't get a word in when you're around
I bet you don't know what I'm about.
'Cause I will, I will speak for myself
What you see isn't all I am.
I need a place to stand.
I will, I will speak for myself.
There's so much your missing,
If you cared to listen."
--Aly & Aj "Speak for Myself"

Dear Diary,

It's time, diary. When I first started writing to you, I didn't tell you what was wrong with me. I didn't explain things, but it wasn't time for me to open you up to my world in that way. It's complicated, you see? My illnesses are not common, not well known. People don't understand them, and it bothers me. I see the way people support illnesses that they know a lot about. I see people's compassion and love for the sufferers of those diseases, but it's not that way for some people with illnesses. Some people don't get that kind of support, love, and compassion because people don't understand. They underestimate the severity and make assumptions. They just don't get it. They don't see that there are so many other illnesses out there that affect people; Like the saying goes, "Out of sight, Out of mind."
I am lucky. I have many people standing beside me, supporting me at every turn. This isn't the case for everyone, and it's time this stops, diary.
It's time to break the silence.
It's time for everyone with an illness, known or unknown, to speak.
It's time for the world to listen.
It's complicated, diary. It's complicated to educate people because some people don't want to know. Some people will always assume, always stay ignorant. But it doesn't matter anymore. It doesn't matter if people don't change. It doesn't matter if people stay ignorant because some people listen. Some people will learn, and that's all it takes.
One person.
One person to make difference.
One person to show compassion.
One person to listen.
One person to try to understand.
It's not going to happen over night. People aren't going to become aware of rare illnesses in one minute, one day, or even one year. But maybe one day ribbons will be worn world wide and car magnets will be distributed everywhere in support of people with all kinds of rare illnesses.
It's time that I educate you, diary.

Love Forever & Always,
ME

Ignorance Is Not Bliss

"If I'm a bad person, you don't like me.
Well, I guess I'll make my own way.
It's a circle, a mean cycle.
I can't excite you anymore.
Where's your gavel? Your jury?
What's my offense this time?"
--Paramore "Ignorance"

Dear Diary,

Ignorance. One word. One word defining one of the worst qualities someone can have. Many say that "Ignorance is bliss", but that's not true. When I became sick, I realized how truly ignorant people are. People don't know so they assume, hate, and disrespect. It's funny that there is so much knowledge out there. There is so many ways a person can learn. It literally only takes 5 minutes to look something up on the internet.
Yet, people choose to stay ignorant.
I'm so frustrated, diary. I am so frustrated that people choose to live a blanketed life. They don't want to learn or take the time to seek out knowledge. They are happy living candy-coated lives. They are happy to judge others simply because they don't really want to understand what another person is going through.
It is so annoying, diary.
I deal with people like this quite frequently. They find out I'm sick with illnesses that are not well known, and they assume. They don't take the time to ask me to explain things to them because they don't care. They get an idea in their mind and run with it, whether it is right or wrong.
They choose to stay ignorant about it because they don't want to know.
They don't want to learn.
Winston Churchill once said "The truth is incontrovertible. Malice may attack it. Ignorance may deride it, but, in the end, there it is." Choosing to be ignorant is not going to change the truth. So, I really have no idea why people try to. It blows my mind. Why would you choose to go against the truth? There are so many ways someone can become educated. Yet, people truly rather live in the lies they create due to their ignorance.
It makes no sense to me, diary.
I just don't get it.



Love Forever & Always,
Me

Live In The Moment

"You have to fight for what you believe in.
You have to wait for the dream,
Go and get it now.
You have to pick things up where you left off.
And Don't look back.
I still believe in living my chance.
I know they could never take that.
This is a song for all our bad luck.
Maybe you'll never come back."
--School Boy Humor "Don't Look Back"

Dear Diary,

I'm sorry I haven't written to you in so long, diary. I had an unforseen problem occur and had to go to the hospital. Life's funny that way. You never really know what's going to happen next. I've been thinking about this a lot lately. I've been thinking about how you never really know what's around the next corner. You never know where you are going to be in a few minutes, hours, or days. I've learned this lesson many times throughout my life, but it really hit me when I got sick. One minute you can be completely fine and the next on your way to the hospital.
There is no way to predict what's going to happen in the future. There is no way to predict how life is going to turn out. There is no way to prevent the future from happening either.
It's frustrating, diary, but it's also a blessing.
Life was never meant to be easy. It was never meant to be a piece of cake, but life isn't about how many struggles we deal will. It isn't about the problems we face, but rather how we overcome the curve balls. How we overcome the struggle and survive.
Life is about living in the moment.
It is about taking everything with a grain of salt and pulling through. It's about not worrying what the future holds because we can't control it. It's about fighting for what we want right now. It's about always saying what's is on your mind and thinking before we say something mean.
It's about smiling and being happy despite the mountains we need to climb.
Because we aren't promised one more moment to tell the people we love that we love them.
We aren't promised extra time to say we're sorry to people when it's time to go.
We aren't promised an extra day to become the person we have always wanted to be.
We aren't promised extra months to do the things we've always wanted to.
We aren't promised more time, but we are promised this moment right now.
Being sick helped me to learn that.
It helped me realize that I need to cherish every moment I have. It helped me learn that I need to tell people how I feel, but never leave a conversation with a mean comment
Because I won't get the extra time to apologize someday.
I won't get the extra time to take back what I said.
Being sick helped me to learn that every moment, every word counts because you never know when your last moment is.

Forever & Always,
Me

Unwritten, Undefined

"I am unwritten, can't read my mind, I'm undefined.
I'm just beginning, the pen's in my hand, ending unplanned.
Staring at the blank page before you,
Open up the dirty window.
Let the sun illuminate the words that you could not find.
Reaching for something in the distance,
So close you could almost taste it,
Release you inhibitions
Feel the rain on your skin
No one else can feel it for you
Only you can let it in
No one else, No one else
Can speak the words on your lips
Drench yourself in words unspoken
Live your life with arms wide open
Today is where your book begins
The rest is still unwritten."
--Natasha Bedingfield "Unwritten"

Dear Diary,

My life is not over.
It took me a while to come to this realization.
My future constantly flashes before my eyes. I wonder how I'm going to survive and how my quality of life is going to be. I wonder how I will be able to finish college, get a job, and start a family.
It's easy, it's so easy to think, to believe that my life is over.
And I think some people think that to. They may not tell me straight to my face, but sometimes I feel like people treat me like my life is over. They think "She can't, she's sick" or they pity me. They write me off and don't believe that my life can ever be good, but they also fail to realize that my life is good. I may be sick. I may feel weak and tired sometimes, but I am still happy. I have a wonderful family, amazing friends, and the strength to carry on. My sickness hasn't changed that. It hasn't broken me down and made me give up on the world, on people. Maybe it has even shown me how good and beautiful people really are. I don't blame and hate the world because I'm sick. I am not unhappy because I'm sick.
And I'm not going anywhere because this is just the beginning for me.
My life will never be easy. I will always be sick. I will always be tired. I will always have to fight because there is no cure. There is no fix, but that doesn't mean I have to stop living. And no, I will not have a "normal" life, but I can still have everything a "normal" person has. I'll just have it in a different way.
My illness has not taken away my life. It has not taken away who I am, and it never will. It will never define me.
Because being sick doesn't end your life,
It changes it.

Love Forever & Always,
Me

I'm Not Alone

"You're not alone. Together we stand.
I'll be by your side. You know I'll take your hand.
When it gets cold and it feels like the end,
There's no place to go, you know I won't give in.
No, I won't give in.
Keep Holding on
'Cause you know we'll make it through, we'll make it through.
Just stay strong
'Cause you know I'm here for you, I'm here for you."
--Avril Lavigne "Keep Holding On"

Dear Diary,

I've been thinking about how lonely it is to be sick. How it feels like I can be standing in a room with 100 people, yet be alone. How it feels like no one understands; like no one gets it, like no one gets me. I feel like everyone thinks they know what it's like to be me. They think they know what it's like to have tubes, be in pain, be tired, and be sick all of the time. They tell me "I understand, sweetie. It will be okay.", but they have no idea. They have no idea, diary, what its like to not be able to go to sleep at night because you're in pain and nauseas. They have no idea what it is like to be given pill after pill in hopes that one will help. They have no idea what it's like to have to worry about every little germ, every cold outbreak, and every flu strain because your body isn't strong enough to fight them off and you'll most likely catch something.
They have no idea what it's like to deal with a chronic illness, and they don't even try to understand.
They treat me like I'm so fragile.
That I'm like good china or a glass vase.
That I'm going to break.
They tiptoe around my feelings afraid that if they ask me something I'll be mad or upset. They just assume things about me. Sometimes, its feels that people thinks sick is another word for voiceless. I can assure you, diary, I am not voiceless.
It's time people heard me.
I don't want to be treated like I am fragile and tiptoed around like I'm going to break at any second. I'm not going to break. I don't want to people to feel like they can't talk to me or ask me questions, diary.
Somedays it feels like the only people that get it are other people with chronic illness. They know what it's like to be sick. They know what it's like to feel alone, and it helps. It helps to know that other people get it. It helps to know that I'm not the only one that feels the way I do. It helps to know that I may have a chronic illness, but I'm not the only one going through it.
It helps to know that I really am not alone.
That I'm not the only one who has to fight.
That I'm not the only one with scars and tubes.
That I'm not the only one that's sick.

Love Forever & Always,
Me

There's Gotta Be Somebody For Me Out There

" 'Cause nobody wants to be the last one there
And everyone wants to feel like someone cares
Someone to love with my life in their hands
There's gotta be someone for me like that.
'Cause nobody wants to go it on their own
And everyone wants to know their not alone
There's somebody else that feels the same somewhere.
There's gotta be someone for me out there."
--Nickelback "Gotta Be Somebody"

Dear Diary,

I've learned many things due to my chronic illness, but I've learned one thing that I never wanted to. I've learned what it is like to feel that you'll never have somebody to share your life with. I've learned that it is hard to keep a relationship going, and that normal relationship issues are so much worse when you throw in a few illnesses. I've learned that people don't understand, diary. It scares me. It scares me to think that I will never find a boy that will support me, that will hold my hand when I'm sick and tell me that I'm going to be okay, that will love me despite my illness.
Every little little girl imagines their wedding. I used to think about mine. I would find the perfect boy, the perfect dress, and the perfect place. Everything would be perfect.
It has all changed though.
I now imagine what my funeral will be like. I imagine how my death would effect people. Because this is my reality. I may not make it another 10 years despite how hard I fight. I will never give up and I will always fight, but one mistake can be the end of me. One treatment option can be the end of me.
And I am terrified.
I am terrified that I will never see my wedding day. I am terrified that I will never meet that one person. That one person who will come to all my doctor appointments with me. That one person who will support me. That one person who will see me for who I am rather than what I have.
I'm scared that I will never experience one of the most amazing things life has to offer; Love.
And maybe this selfish of me. I have so many people that love and care about me. I have so many people that are by my side. I have experienced the unconditional, unwavering love of a family. Of friends. Maybe this should be enough and it is. It's more than I can ask for, but that doesn't stop me from wanting to experience the other type of love. The love that you aren't born with. The love that grows over time and you have to work for.
It scares me, diary, that I may never find that.
I may never find anyone that understands me, and I can see why. Why would somebody want to deal with someone that is so complicated? Why would someone want to start a relationship with someone that is sick all of the time? I understand why people don't want to get involved with me. I'm not a safe bet. I'm not even a good bet because chances are that I am going to face many problems for the rest of my life. The chances that I will ever get better aren't good. I understand why people don't think of me like that. People don't want to date the sick kid. People don't even consider the sick kid an option, and it is not fair. I may not be a safe or good bet, but I am still a bet.Why can't people see past the tubes, past the paleness, past the rings under my eyes, past the tiredness, the nausea, the sickness to see who I am?
I'm only 19, diary, I shouldn't have to worry about the fact that I may never find love, but this is my reality. I don't get looked at like other girls do. I don't get chances to show people who I am.
I am the "sick" girl.
But the truth is, I am so much more.


Love Forever & Always,
Me

I Am Still Me

"You can take everything I have.
You can break everything I am.
Like I'm made of glass.
Like I'm made of paper.
Go on and try to tear me down.
I will be rising from the ground,
Like a skyscraper, Like a skyscraper."
--Demi Lovato "Skyscraper"

Dear Diary,

I've been struggling with this for a long time. I've struggled with myself, with my past, with my present, with who I am, with my illness. I can't begin to tell you how many times I have asked myself "Why me?" and "What did I do wrong?". I can't even begin to tell you how many people I have lost, diary. I can't even begin to tell you what my life has been like. I can't begin to explain what goes through my head on a daily basis; the fight I constantly have with myself in order to stay positive and not blame myself.
I'm not a bad person.
I'm finally starting to realize that this isn't my fault. It is not my fault that I am sick. It is not my fault that I hurt. It's not my fault that people walk away. It's not my fault that people don't understand. It's not my fault that I'm not normal.
I have worked so hard to be normal. I've tried my best to go out, meet new people, to just be able to stay up with my friends. I've had to work the past three years to show people that I'm still me. I'm still the person they've always known.
I have worked so hard to show people that I am not my illness. That I am so much more than that. I really don't get why I'm defined by what I have rather than who I am.
I am so much more than just the "sick girl".
I am so much more than my illnesses
and I think I'm done, diary.
I think I'm done trying to convince people who I am because if they can't see who I am, if they can't take the time to get to know me, than I don't need them in my life. If they can't see that I'm the type of person who will smile through the pain. The type of person that will feel horrible and run down, but still be more worried about the kid down the hall who is sick. The type of person that will fight for everything I have, everything I am, and everything I love.The type of person who above all things is a fighter, is resilient, and will never back down. Than I don't need those people in my life.
I am ill, but ill isn't who I am.
I will never be normal, and I'm starting to be okay with that. I accept who I am. I accept that I'm chronically ill. I accept that I may never get better. I accept that I was dealt a hard hand in life and I'm okay with this. I've learned so much from being sick and in a way, my illness made me who I am today. It may not define me, but it has helped me find myself.

I am strong.
I will fight.
I will get by
and in the end, I will smile and be okay.
Because that is who I am.
I am a fighter. I am resilient. I am beautiful. I am a good person.
And above all,
I am alive.


Love Forever & Always,
Me

A Moment Came and Stopped me on a Dime

"He said "I was finally the husband
That most of the time I wasn't.
And I became a friend a friend would like to have
And all of a sudden goin' fishin'
Wasn't such an imposition
And I went three times that year I lost my dad.
Well, I finally read the Good Book
And I took a good long hard look,
At what I'd do if I could do it all again."
--Tim McGraw "Live Like You Were Dying"

Dear Diary,

I was diagnosed approximately 3 years ago with my first chronic illness. Since then I've realized how much my life has came into perspective. I've realized what really matters, who really matters. I've realized that all the silly little things in life, like popularity and clothes, aren't important. I've realized that you're not promised a tomorrow and that you don't always get a 2nd chance. It's scary to think about that, diary, sometimes terrifying. The other day I experienced something that I never thought I would experience. I got really sick with a blood infection. I was afraid to go to sleep. I was afraid I was going to die.
This is the first time I truly felt like my body could not take it anymore.
I was tired, fevered, and I just felt wrong.
This scares me because I have been fighting for so long. But I also realized that it is okay to be afraid and scared sometimes. It is okay to lean on someone else for support, for strength. It is okay to need someone.
I'm not going to lie to you, diary. I'm am not going to tell you that I am always strong. That I don't get mad. That I don't cry and get frustrated sometimes. The truth is that I do get tired. I do get angry and upset. I do break down and cry, but it is okay. It is okay because I have people around me to be my strength when I am weak. I have people to rely on when I need it and at the end of the day, this is what matters. These people help me through my toughest times. They are the reason I work to be strong. That I work to be a better person. That I work to stay alive.
Since I became sick, I've realized that I have to be strong, but I also have to have strong people behind me. I've realized that I have to forgive people and give 2nd chances. I've realized that I need to find the beauty in people, in the world. That I need to love instead of hate. That I need to let things go and walk away. And that I need to say what I mean and what I feel because one day I may not get a 2nd chance to become the person that I want to be. I'm not entitled to one more day. No one is.
When I got sick, I realized that life is a gift.

Love Forever & Always,
ME

Storybook Endings, Fairytales Coming True

"Starting your fashion, Wear your heart on your sleeve.
Sometimes you reach what's real just by making believe.
Unafraid. Unashamed.
There is joy to be claimed in this world.
You even might wind up being glad to be you.
Ever, Ever After
Though, the world will tell you it's not smart.
Ever, Ever After
The world can be yours if you let your heart.
Believe in ever after."
--Carrie Underwood "Ever, Ever After"

Dear Diary,

I read a question on a website the other day, diary. I've been thinking about it for a few days now because I think it's one of the most important questions I've ever saw.

Who is going to be there when all your dreams come true?

This question hit home because I realized it's a hard question. I thought it would be so easy to anwser, but I'm not sure what my dreams consist of. I have so many. The little ones like having a family, getting married, becoming a nurse, and being happy. Perhaps, a lot of people don't think these dreams are little. Maybe to some people these dreams are what they have been working towards and waiting to accomplish their whole lives. Maybe that's what normal dreams are like, but my dreams are different, diary.

I dream that somebody someday finds a cure.
I dream that if a cure can't be found, a better treatment becomes available.
I dream that if I end up needing a transplant, that I survive.
I dream that I will be able to help somebody someday.
I dream that people will read you and take something from you.
I dream that the hatred in the world stops.
I dream that kids wouldn't have to get chronic illnesses.
I dream that I will make a difference.
I dream that I will change the world.

I don't know if my dreams will ever come true. I don't know if I can have that much of an impact on someone, on the world, but I can try. As for who is going to be at my side, that's tricky.
I would like to think that everyone that reads you will be at my side.
I would like to think that one day people will see how good and beautiful people are, how good and beautiful the world is. I would like to think that one day we all will be able to look at each other with love instead of hate. I would like to think that one day people will see other people, especially those with chronic illnesses, for who they are. For the fighters they are. For the strength that they hold. I would like to think that one day everyone will stand by me in saying that tubes, scars, and people in general are beautiful because just because they exist. Because they are people with personalities and feelings.
So, in a way, I hope everyone in the world will be their when my dreams come true. That everyone will help my dreams come true.

Maybe we can all change the world.

As for my other dreams...
I know the people that love me will be their when my dreams come true. My incredible mom. My unbelievably amazing sister. My caring father. My cousins and aunts and uncles. My loving family. My best friends. My favorite doctors.
I truly believe that if I need a transplant one day, a new treatment comes by and works, or a cure is found,when it's all said and done and I've survived, that I will stand there with these people. I will look at these people and tell them "We did it. We've made it. We've survived and We're Okay"
I believe that if these things happen, everyone with a chronic illness, we be able to stand together and shout "It's over!"
I believe that we will be able to look to the stars, to all the people who have died due to a illness, to all the people who have fought so hard and thank them.
Thank them for fighting.
Thank them for helping doctors find better ways to treat us and cure us.
Thank them for their lives.
I know, diary, that I will be able to stand with my loved ones and be thankful that they have always been their to support me. I even know that I will be thankful for the struggles I went through. For the strength that helped me fight everything. Even for my chronic illnesses. Because these things and people, they made me who I am today.
They helped me to write my story.
They are a part of who I am.
And for that, I could never be anything but grateful.

Love Forever & Always,
Me

You're So Mean When You Talk About Yourself

"Pretty Pretty Please,
Don't you ever, ever feel
Like your less than, less than perfect.
Pretty Pretty Please,
If you ever ever feel like you're nothing,
You are perfect to me."
--Pink "Perfect"

Dear Diary,

Today life threw me another curveball. Maybe it wasn't so bad, though. It really made me think about how I feel about myself. How other people with chronic illnesses feel about themselves. Self-Esteem. A word that can make or break someone. Everyone feels bad about something on themselves, but I think sometimes its a little worse for people with chronic illnesses, diary.
We deal with
Tubes, Ports, PICCs, No hair, Water Weight, Weight Gain and Weight Loss, and so much more
It's so hard.
I think maybe it's even scary sometimes. It was scary to walk into the grocery store with a tube in my nose. People gave me dirty looks. People stared. Everywhere I went I was the center of attention. People knew me as "the girl with the tube" not "Ashley" not my own name. Reputations I worked so hard to get were gone. I was "the girl with the tube". It's like my name didn't even matter, diary. I was excited to finally get my tube put into my stomach. I could hide it. No one would look at me funny. The dirty looks stopped. No more staring.

This is WRONG.

I don't think I ever really understood how wrong this is, diary. How much people judge and ridicule based off a tube. How much people still stare at me when I have to carry med infusions around or my tubes show.

This is UNFAIR.

Nobody should ever have to feel like I do and did on a daily basis. Nobody should be afraid to walk into a grocery store or school. Nobody should have to hide their tubes from people. Why do I have to put make up on to cover my pale face and ringed eyes? Why do people who are sick have to worry about pimples and medical devices? Is it right that I have to be embarrassed and hide my tubes and scars?
I just don't get it, diary.

Why do we do this to people with tubes?
Why aren't our tubes considered beautiful?
Why do we put up with so much and then not even be able to go outside comfortably?
Why can't people find the beauty in our tubes?

These devices and tubes save my life. They keep me ALIVE. Perhaps, that should be what people consider beauty. The fact that these things save lives is beautiful. Not embarrassing. Not wrong. Not something to be ridiculed. It scares me to think that I may never have a boyfriend or get married because I have tubes. Isn't that silly to think, diary? Why should my tubes define who does and doesn't like me? Don't I deserve love despite my tubes?
It embarrasses me to show off my tubes and stuff. I'm starting to think that this isn't right. I'm starting to see, diary, that I shouldn't be afraid to show off my tubes or scars. They are beautiful because they show I am a fighter. They show that I'm not afraid to save my life. No matter the cost. No matter the ridicule and looks.
I think this is the first step.
I think it starts with me.
I think I need to find the beauty in myself
before anyone else can.
I think I need to find the beauty in my tubes
before anyone else can accept them.

So, I'm going to make a promise to you, diary. It can be our little secret.
I promise that I will work on not being embarrassed that I have tubes.
I promise that I won't hide them from people.
I promise that I will try not to be embarrassed to get pictures because all the IV fluids make my face puffy.
I promise to find my beauty.
Because I am.
I am beautiful because I am me.

Maybe one day people who see others walking around with tubes will look at them and say "You're Beautiful", "You're scars/tubes are Beautiful" or "You're Inspiring". Because that's what these people are. They are the strongest people I have ever met, diary. They are Beautiful because they are who they are. Their scars, tubes, and everything are beautiful because they help save their lives. Maybe someday a person will be defined by who they are rather than what tubes or illnesses they have. Maybe someday someone will be able to take my hand and walk with me. Maybe one day the look of my tubes won't matter so much. Maybe one day I will be able to walk around in my bikini at the beach without getting looks because of all my scars and tubes. Maybe one day somebody will see me for me.
I guess I can always dream, diary.

It's like I've been saying all along...
Everyone is pretty in their own way.
Maybe it's time we start realizing it.

Love Forever & Always,
Me

I Did It

"It's my life.
It's now or never.
I ain't gonna live forever.
I just wanna live while I'm alive."
--Bon Jovi "It's My Life"

Dear Diary,

I did it, diary. I faced my fears and let the world in. It wasn't as bad as I thought. People like you. People are reading you and they care. Maybe I should have done this from the beginning.
Maybe I will make a difference yet.
I guess we'll find out.

Love Forever & Always,
Me