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16 Years

Posted on 8/03/2011 10:37:00 AM In: , , , , , , , , , , ,
Today is August 3rd.
It marks the 16 year anniversary of my diagnosis with cystic fibrosis.
16 years of countless medications, pills, doctor's appointments, treatments & pain.
Thousands & thousands & thousands of simply everything.
15 or 16 picc lines, a few ER visits, a few hospital visits, a port-a-cath placement, CF related diabetes, millions of dollars raised, and too many, WAY too many dying/passed friends.
In 16 years, I've met amazing people dedicated to curing this disease.
I've gone on my dream vacation to Maui for Make@Wish.
I've been on the show 7th Heaven.
I've personally met Celine Dion.
I've met so many cysters & fibros who understand CF like I do; not as a simple medical definition, but as a demanding and draining lifestyle.
I've heard incredible speeches, & I'll be saying one myself this Saturday.
I've had my fair share of memorable experiences and none of them would've occurred if I didn't have cystic fibrosis. 

SO, in spite of how deeply I hate cystic fibrosis, HATE it with all the passion in my body, I cant still stand here and say that I am blessed. CF has shaped me into the person God meant for me to be. Sixteen years later~ I get it. I'm supposed to be this way. Cystic fibrosis is an external disease. It may damage my lungs, my sinuses, my pancreas, my stomach, my digestion, my breathing, my insulin levels, my liver, and pretty much everything else in my body (since everything is connected in some way or another). But there are some things it will never damage: the bonds I've made, the fulfilling live I've lived [SO FAR!] and the will in my body to fight harder than ever before. Oh, & of course, myhope.

16 years ago today, my parents received a phone call. They drove to the doctor, longing for some clarity as to why their infant was so sick, and they received it. Their daughter was now a part of a statistic, part of a 30,000 person rmy fighting this disease. They were scared. They didn't know what my life would hold; if I would be a skinny, barrell-chested young woman, if I would call the hospital my second home, if I would live a normal life, if I would even LIVE long enough to know what a normal life was life. Sixteen years later ~ I have cystic fibrosis. I fight every dat. I know pain, I know sadness, I have seen my friends die. But hell to the statistics. Hell to a median age of 37 years. I have cystic fibrosis, but cystic fibrosis will NEVER have me. 

I've lived with CF for 16 years now. But this is only the beginning.

RIP all of those who have lost their battle. YOU are my inspiration.

"You don't know how strong you are until being strong is the only choice you have.

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Emily Haager

Posted on 5/01/2011 11:08:00 PM
I can't believe it's already been a year since her passing.
She was, and always will be, an inspiration and a mentor.
Her spirit lives on, and comes alive within me when I surf or spread cystic fibrosis awareness.
Ironically, Emily passed on the first day of May, which is CF awareness month.
We need to fight to redeem Emily's memory.
We need to get rid of this disease for her and all the other thousands whose breaths have been stolen from them.
Emily, I hope you surf the most perfect waves in heaven.
I hope you dance every day and have sleepovers with other cysters and fibros every day.
Breathe deep, breathe easy.
Oh, and give Annie a big hug from me :).
I love you <3 RIP.






Oh, and let us not forget the great news American received today. Nearly 10 years ago, Osama Bin Laden led the attack on 9/11, and murdered over 3,000 men, women and children. Today, he is dead. Praise the Lord :) God is good, now justice is done.

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So.
Nearly 4 months since my last post.
I would try to catch you up on everything that's happened, but it's too overwhelming.
Annie Bowen passed away January 27th,
Eva Markvoort's 1-year anniversary of her death was March 27th,
I turned 16 on April 13th,
& Emily Haager's 1-year anniversary of her death is soon --- May 1st.
It's been a rough few months, but I finally think I'm beginning to come out of the storm.

Thanks, guys, for understanding why I haven't posted. I've missed it, so I hope to be doing so more often.
I love you all.
<3

Carly

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5 weeks of IVs,
one ER visit,
5 days in the hospital,
up to 4 treatments a day,
and my PFTs are not improved.
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So, the plan now is, I'm getting a bronchoscopy done (they go into my lungs, get a good culture, and flush things out), CT scan, bloodwork, and chest X-ray. Also, I'm starting inhaled coly & cayston, and am replacing my advair discus with a new inhaler.
LETS DO THIS. 

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The Epitome of Strength

Posted on 1/04/2011 08:21:00 PM In: , , , , ,
How do you articulate the love and admiration you feel for someone close to you?
How can you fully show an outside party the strength and courage this person holds?
You truly have to know Annie to understand both what this amazing woman goes through and see how gracefully she deals with it.

"I have had brain cancer four times within an 8 year span. I am a strong woman and a fighter who will not back down from this horrid disease. I have much more to accomplish in this life time.. my story continues.."

Annie is the mom of my boyfriend, Spencer, who I've been with for almost a year. When I first met her, I thought she was one of the most vivacious and loving people I have ever met (and that impression hasn't changed one bit). She was overpowering her tumor with a firm confidence and a strong trust in God.

Over the year that I have known the Bowen's, I've gradually seen the degeneration of Annie's physical strength (note the emphasis on physical, as opposed to, say, mental or spiritual). When I first met them, she was able to drive a car; now, she cannot walk around her house on her own. The evil wrath of her cancer has taken it's toll on her, yet, she is still optimistic. "I have much more to accomplish in this life time.. my story continues..".

Annie Bowen is the epitome of strength. How else can I say it? So, to Annie, I say thank you, for being an inspiration to me, and I want you to know that you are blessing to everyone who knows you. Stay hopeful.

Love always,
Carly

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Gimme a break, pun intended.

Posted on 12/19/2010 12:11:00 AM
It's a bit late, but my body is on a weird sleeping schedule, thanks to my IVs, so I'm not very tired.

I'm really sick of so many things. Mostly, but definitely not limited to, CF. I'd rather not go into it. I'm not really sure how to handle it, but I think I'm doing it incorrectly.

Our winter break started as of yesterday. (Well technically, two days ago). I'm not sure if I'm happy about this? I still have to do Christmas shopping, & I wish I could feel like I'm actually on a BREAK. It wasn't a break when I was home from school for 2 weeks, and it's not a break when you have schoolwork to complete over break. breakbreakbreak. I wish there was a synonym for break. Break is breaking me.

Why does this world have so much sadness? I kinda hate it. Why can't there just be a break from sadness? Ha. I used break again.

Well that's all. I'm going to take a break from consciousness and slip into a world of dreaming. Dreaming is a break. Except when it's a nightmare. I had a nightmare the other night that someone opened our garage and snuck into the house and robbed us. I worry about that every single night. I'm also afraid of the dark. Did you know that?

Elton John's singing in my ear. Goodbye, yellow brick road. Hello bedtime. Later guys. I love every single one of you. 

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Today...

Posted on 12/17/2010 01:19:00 PM In: , , ,
Today, I am at home. I'm on IV antibiotics. The cold tightens my lungs, and my back has been aching constantly.
It's the last day of school before winter break. I miss school. I'm going to do 2 weeks of school work over break. wooooo.
My friends are probably exchanging gifts right now. I told my boyfriend to pick mine up for me because I'll be seeing him over break for sure. Hopefully he remembered.
The rain has been coming down nonstop all day. I love the rain. Maybe I'll bundle up multiple layers of winter clothes and sit in it. I haven't showered today anyways...haha.
My doggie is curled up sleeping peacefully next to me. She is a perfect little oval of rusty brown hair. 
My iTunes is on shuffle. "Old Soul Song (For the New World Order)" is playing. It's by Bright Eyes.
There's hot chocolate in my pantry. I've decided I'm going to make hot chocolate with peppermint mocha coffee creamer.
Our Christmas tree is really pretty. I put the lights up myself. LED, baby.
Well, there's not much to write about. I'm off to go make my hot chocolate. Yum.

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