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

I'm Doing This For Me

"I'm not afraid, I'm not afraid
To take a stand, To take a stand
Everybody, Everybody
Come take my hand, Come take my hand
We'll walk this world together through the storm
Whatever weather, Cold or Warm
Just lettin' yah know that you're not alone
Holla, If you feel like you've been down the same road."
--Eminem "Not Afraid"

Dear Diary,

I've been thinking about this a lot lately. It something that in my heart I want to do. I want the world to know. I want to help other people in my position. It took me a while to get to this place. My heart tells me one thing and my head tells me another. I'm constantly thinking What will other people think? Will anyone care? Will this help? I can honestly say that I'm not sure what other people will think. I not sure anyone will care enough to even read what I have to write. I have no idea if this will help anyone. It will help me though. And If I can help one person come to terms with their illness or If I can help one person to see what other people go through, It will be worth it. I want to make that difference in one person's life. Perhaps, someone will even be able to find the strength inside them to fight their illness if they realize that they are not alone. I'm scared, diary. I do not know what people will think if I post this. However, part of me wonders if it even matters what anyone else thinks. I am doing this for me. I'm doing this to put my words, my story, out there in the off chance that it will make a difference. Maybe people will make fun of me. Maybe people will understand what I go through. But maybe just maybe, It doesn't matter. Does it matter if a few people in this world make fun of me for posting this? No, I don't think it does. There are always going to be people who don't understand, who make fun of others, who just don't know what respect is. And I'm starting to think that that is okay. I'm not here to change anyone. I'm not even hear to get pity. I don't want pity. I am hear to tell my story.


I'm doing this for me.


Love Forever & Always,
Me

Walk a Day in My Shoes

"The greener grass that turn my head so swiftly did turn brown,
'cause every little dream I've built is always tearing down.
I never knew old Charlie's shoes could have so many tacks,
of disappointing sorrows. I wish he had 'em back."
--Billy Walker "Charlie's Shoes"

Dear Diary,

I've decided to show you what a walk in my shoes looks like. Just a small glimpse. Perhaps, than you will realize a little about what my life is like. Maybe you'll judge me for this. Maybe you'll think I'm not fun.( I think some people do) Or maybe just maybe you will realize that the things you take for granted in life should be appreciated. Maybe you'll realize that your life isn't so bad. Maybe you'll realize what life is like for the many of us in the world with chronic illnesses and look at us differently. Because maybe you'll realize that we strive to have normal lives to. It just takes more work for us to be "normal". What is "normal" anyway? I think maybe being different isn't so bad anymore. Maybe normal is overrated.

This was basically a walk in my day today.
The times may be a little off.
You get the idea.

1 am - My IV nutrition was stopped temporarily in order to start IV antibiotics.
1:15 am - My sugars started dropping. (How do I know this? Well, I had to check them.) This happens because my body has a hard time adjusting to being off the nutrition which provides me my sugars for a day.
1:30 am - My sugars drop more. I have to replace them fast with a dextrose infusion.
1:35 am - I hook back up to my IV nutrition. I read and go to bed.

8 am - I must wake up. It's time for IV antibiotics again.
8:30 am - Back to IV nutrition and perhaps sleep.

12 pm - Time for another Med infusion. IV nutrition is done.
12:15 pm - I must check my sugars in case the med dropped them.
12:30 pm - Repeat my sugars and switch from med infusion to a dextrose infusion.
1 pm - My infusions are done for now. I must check my sugar one last time.

I do what I need to do for the day. Shower (I need to place a guard over my central line.). Do college work. Take naps. Watch TV. Play video Games. Talk/hang out with friends.
You must remember that during this time I take meds to control my illnesses and symptoms. I may even get sick and have to rest for a while. My body isn't quite as energized as it once was. I also must work on trying to do Jejunal ( that is part of your intestines) feeds during this time. If I go out, I must remember to take my supplies, Tubes, Medicines, and maybe I even have to carry infusion bags with IV nutrition or formula. I'm never quite carefree. I would not survive being carefree.

7:30 pm - I must give myself pre-meds so that my med infusion doesn't make me sick. (I forgot to add this last time. I do that sometimes. Its hard and easy to remember everything. My day involves schedules just like anyone else. Except mine are different.)
8pm - Time for my med infusion.
8:15 pm - Time for me to check my sugars.
8:30 pm - Time for me to check my sugars and switch to a dextrose infusion.
9 pm - Time for me to check my sugars. My destrose infusion is done. I must hook up to my IV nutrition.

AND REPEAT...(I've probably forgot some things. I think you get what I'm trying to tell you though. Maybe not)

Believe me in saying that my day does not always work out or go like this. Like everyone, sometimes I need to deal with a curveball. Perhaps, diary, you know what this feels like. Maybe in a different way. As you can see, my days must consist of some trials. In a way, they are like your days. Just different. I deal with the fact that I need to do certain things to keep me alive. I cannot simply forget or be care free. I cannot mess up. Mess ups can be fatal. People do not understand how complicated it can be to stay alive. There body does this for them. They don't need to keep tabs on everything. I am not one of those people. I think you understand what I'm trying to say. I will talk to you later, diary.

Love Forever & Always,
ME

The Hardest Part was Letting Go

"Everything I Know is Wrong,
Everything I Do, It Just Comes Undone
and Everything is Torn Apart.
Oh, and It's the Hardest Part
That's the Hardest Part."
--ColdPlay "The Hardest Part"

Dear Diary,

I've made a realization today. It came after my best friend left. We were looking at quotes and I saw one that said "Let Go". A simple two words. Not even long ones, but they held meaning for me because I realized one of the hardest parts of dealing with a chronic illness is letting go. Now don't get all thinking I mean letting go as in dying. I don't. I just realized that there is a lot of things you have to let go of in order to deal with an illness. And maybe you don't realize that you're letting go of them until they're gone, but it doesn't make it any easier when you do realize it.

Here are some of those things.

1. This is probably the most important. The one that effects you the most.
You need to let go of yourself in order to become a different you.
You need to embrace and accept that your life is going to change. You need to be able to get rid of your old worries like boyfriends, friends, and makeup and realize that certain things in life are more important than high school drama, crushes, and who does and doesn't like you. I think this happens whether you want it to or not. It's not something you can control.

2. You need to let go of people.
I don't think I even realized this one at first. People have always told me that someday a person's true colors will show. And perhaps, this is most accurate during times of hardship. I can't tell you how many people have shown me their true colors since I've got sick. How many "friends" didn't call to check up on me or even acknowledge me anymore. How many people let me down. How many times my boyfriend, or ex-boyfriend, broke up with me because other things in life became too important. This isn't a bad thing, though. I would being lying if I said this is an easy thing to go through. It sucks that people that were once so important can walk away. However, you realize that the people that stay in your life, that check on you every day and visit you when you're in the hospital, that make it a point to be there for you and make you feel important are the only ones you actually want in your life. My family. My true friends. They are the people that I want in my life. It took me a while to realize and it hurt to lose friends, but I am a better person for it. I am more whole. My life consists of people that care about me and love me. Not people who only like me for my clothes, hair, or the drama that brings them entertainment.

3. You need to let go of your weaknesses
in order to find your strength.
You need to find your strength. And I'm not talking about the "I lift things up and put them down."type strength(although I'm sure that never hurts), rather more of your inner strength. The strength that is going to push you to the next day when you feel like crap and are tired. The strength that will make you fight for what's important; Your life. The strength that will keep you going when all else fails; for your friends, for your family, for the people you love, but most importantly for yourself.

Diary, I could go on for a while, but I think I'll stop now. Those things are the most important things. I didn't even notice how much I had to let go of these things in order to deal with my illness. I think the person I am now is who I was supposed to be all along. These changes aren't bad. Maybe I couldn't see that before, but now I can.
Everything happens for a reason.

Love Forever & Always,
Me

It's My Life

Dear Diary,

It's been approximately 3 years since the day I was diagnosed with my first chronic illness. Some would say that 3 years, 1095 days, is a long time and it is, but sometimes it feels like it's only the beginning. That's alright, though. I'm ok and I will never be anything but. Three years ago, when I was diagnosed, I was a different person. I am changed. I grew up. Some say 19 years old is still young, but in a way I feel older and younger than most people my age. I've been told that "I'm wise beyond my years...", but I'm not so sure that that's entirely true. I think I've just seen and experienced life in a different way than most people. And let me tell you, people don't lie when they say life isn't easy. It's not easy. I don't think it was ever meant to be easy. My struggles will be different than your struggles, but that is okay. I truly believe that God only gives us as much as we can deal with. I can deal with this. If it wasn't me than it'd be somebody else and I know I can handle this, somebody else might not be as capable. Someday diary, I will share my illnesses with you, but today is not that day. Today, I've decided to be silent.

Love Forever & Always,
Me