Tuesday, August 31, 2010

One Year Free

I'm officially 100% IV Free for One Year.  To celebrate, my parents and I threw a party on Saturday.  It was wonderful - almost all my favorite people were there, and everyone made it so special.  It was better than any birthday party I've ever had because it had so much more meaning to me. 

It was like giving me my life back. 

A friend of mine told me tonight, "You really know how to live, girl...".  And THAT made my night because that is what I want to be known for and eventually remembered for - knowing how to live.  Also, knowing how to love.


This post is dedicated to everyone who helped me get here - ONE YEAR IV FREE.  


To Mom and Dad because they do everything for me.  They always have.  They fight just as hard as I do, if not harder.  I love them with all my heart.  My one wish has always been for them to worry less, and hopefully now they can worry a little less.  


To My Brother for being my little JerkFace.  You understand me and my CF because you've lived it too.  I'm sorry you had to - you got healthy genes and had to live alongside CF anyways.  You are my strength when other people aren't so there for me.  Thank you for getting me here.  I know I called you crying almost daily for a long time this spring - and I'm sorry, but you were wonderful.  The perfect panic attack cure.  I'm so proud of the human you are becoming.  I love you, Dar-Dar.


To My Bonus Siblings and My Bonus Nephew: I could write pages about all you have done for me.  Chris, Kyra, Luca and Sarah Lynn - my life would be empty without you.  You make me smile daily in some way and you're right there to live my life with me.  Here's to the family you CAN pick!


To My Friends:  Thanks for loving me.  I love you, too.  Let's keep living life!!!


To Dr. Green: You said it was very unlikely that I would ever make it 6 months, let alone a year, without IV antibiotics, and here I am. I was 18 when you told me that, and now I'm 24.  I think we both know we didn't know if I would make it to 24 without needing a transplant... and I think we're both very glad I don't need one right now. Thank you for being the best Pediatric Pulmonologist ever.  You treated me with love and compassion for over 17 years and I've been searching for that kind of care ever since.  I think I've finally found it at another CF care center.  Thank you for being a role model for the kind of treatment and care I deserve.  And I made it a year!!!


To the hospital staff and doctors: Here is one line thanking you all. 


I did it, guys!!! I'm ONE YEAR FREE!

CF as a Gift

Cystic Fibrosis is a gift. What it has given me is possibly more important than anything I could have learned if I were healthy.

I have learned to appreciate life. I appreciate and love the people around me as much as I can. I want to experience things and do as much as I possibly can.

CF has given me the opportunity to grab life by the horns and make it mine. It has taken me a long time to figure out what way I want to steer the horns of life, but I think I'm starting to figure it out.

I want to help people. I've always wanted to help people. When I was little I wanted to be a pediatric pulmonologist so I could help other children with cystic fibrosis. I've always wanted to help other CFers, but recently I've realized I just want to help people in general.

I want to be an advocate. I want to help people navigate the craziness that is the medical world. Teach them how to self advocate, and get through the insurance hoops. I want to help people get to a therapist and/or a psychiatrist because I've seem my share and know how to find a good one. I can help people organize their medications and figure out a way to remember how to take them.

I want to spend time with children and see the world through their eyes. I want to help mold them into better people. I want to share their joy in new things and comfort them when they are sad.

Most of all, I want to live and feel like I'm skipping joyfully through life. And right now I have that part down.

-- Carla's on the go! Post from her iPhone.

Thursday, August 26, 2010

Dating Dilemma

Here's an update on the Dating Situation. 

Last night I went on a very good first date! Yay me! I didn't know such a thing existed.  Usually they are okay, or awkward and then I dump the guy by the end of the week.  I don't think that's going to happen this time... but we'll see.  It hasn't been a week yet. 

My dilemma is this: there are too many guys.  Right?  Who ever thought this would happen to ME?  I'm the sick girl who can't get a date - let's mend that - I'm the sick girl who can't get a SANE date.  There was that guy who said we could have kids and the surrogate would be his 2nd wife and she'd live in a different wing of the house and help me raise all our children.  He was a winner.  The kid with no job living in his mother's house. 

So too many guys.  I have three other guys who want to meet me.  I want to stop communicating with guys just because this is getting overwhelming.  I'm supposed to be rejected again and again because of my health and post it on my blog - that's what I DO.  What if I have to choose between more than one nice guy?  I don't know how to do that! 

On the up side, I did have a good first date!

Sunday, August 22, 2010

Reasons for Rejection, II

Here is a reason I rejected someone.

The question is "What are you most passionate about?"
His answer:

"I love sports but I am probable most passioniate about helping people, thats a big reason why I want to be a police officer. Probable sounds a little too good to be true but it is."

Your spelling skills leave a little to be desired, PROBABLY.

Friday, August 20, 2010

Reasons for Rejection

So I'm going to post funny profiles, awesome reasons for rejection and other crazy things that happen during my eHarmony experience. 

Here is my first online "we can't date because" rejection:

"I'm having fun emailing you too... but i must say, i'm really bummed about the anti-kitty thing... Cats are such a huge part of who i am, and my identity, and there's no way i could ever be without them running freely around. That's not exactly a good thing when they're kinda life-threatening to you :(

Beyond that.... there's no easy way of saying it, but it frightens me to enter into a potentially serious relationship with someone having a serious illness. For the last almost 30 years i've grown up watching my mother take care of my increasingly disabled father. I won't get into the details - but... i know its not something i could do."

The second part I understand... and that's fine with me.  I wouldn't want to be with a guy who knows he couldn't handle me being sick-ish ;-)

It's the FIRST part that cracks me up.  The kitty part - I love the way it's worded and that kitties are part of who he is.  Hope it makes you laugh as much as it made me laugh. 

Wednesday, August 18, 2010

Almost There!

In less than two weeks it will be ONE YEAR since I have had any IV antibiotics.  Sometimes, I still can't get my mind around this.  Part of me feels so free, and another part of me feels really tied down - waiting for the bottom to drop out.  Waiting until I'm sick again.

And I know that is not how I want to live my life.  I am so grateful for everything I have going for me right now.  I want to live my life to the fullest for every CFer who is still in a hospital bed somewhere.  I want to fight for research and CF awareness.  I want people to know how isolating this disease is and how much we need to talk to each other to get through this. 

But I still feel guilty sometimes.  What did I do to deserve this good health?  Why did people I care about leave this earth?  Why wasn't it me?  Do I have a purpose in still being here?  Am I as inspirational as those we have lost?  I hope so. 

I feel blessed because I am healthy.  I feel sad because I'm the only one.  I wish I could fix others and help myself at the same time - but I guess it doesn't work that way. 

Monday, August 9, 2010

My Parade!

Dear Mom,

This is my parade.  It's my life, and I'm going to live it the way I want to.  It doesn't mean I don't love or need you.  It means I want to be an adult, because I'm 24. 

I found a little song that fits this pretty well.  It goes like this:

Don't tell me not to live,
Just sit and putter,
Life's candy and the sun's
A ball of butter.
Don't bring around a cloud
To rain on my parade!
Don't tell me not to fly--
I've simply got to.
If someone takes a spill,
It's me and not you.
Who told you you're allowed
To rain on my parade!
I'll march my band out,
I'll beat my drum,
And if I'm fanned out,
Your turn at bat, sir.
At least I didn't fake it.
Hat, sir, I guess I didn't make it!
But whether I'm the rose
Of sheer perfection,
Or freckle on the nose
Of life's complexion,
The cinder or the shiny apple of its eye,
I gotta fly once,
I gotta try once,
Only can die once, right, sir?
Ooh, life is juicy,
Juicy, and you see
I gotta have my bite, sir!
Get ready for me, love,
cause I'm a commer,
I simply gotta march,
My heart's a drummer.
Don't bring around a cloud
To rain on my parade!

I'm gonna live and live now,

Get what I want--I know how,
One roll for the whole show bang,
One throw, that bell will go clang,
Eye on the target and wham
One shot, one gun shot, and BAM
Hey, Mister Armstein,
Here I am!
I'll march my band out,
I will beat my drum,
And if I'm fanned out,
Your turn at bat, sir,
At least I didn't fake it.
Hat, sir, I guess I didn't make it.
Get ready for me, love,
'cause I'm a commer,
I simply gotta march,
My heart's a drummer.
Nobody, no, nobody
Is gonna rain on my parade!

Love,
Carla

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