A Life Regretless;

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

Today, I surfed with Mauli Ola.
Oh, how I have missed that bunch of people.
Those group of cool loving, whole-hearted surfers.
I seriously, legitly (is that a word?) love them.
With all of my heart.

Surfing, is my love.
Mauli Ola gave that to me.
My lung function is in the 90%'s.
Am I really going to say that surfing hasn't played a HUGE part in making me healthy?
Sinus surgery - COMPLETELY avoided.
In fact, my sinus doctor said my nose wasn't even RED or SWOLLEN.
That hasn't happened...like, ever.

I miss Emily Haager.
So much.
& that is all.



...No.
That is not all.
I've been thinking about her nonstop.
Playing movies through my head,
picturing the pain she went through.
The muscle degeneration,
the lack of respiratory therapy,
the tracheotomy.
the code blues.
the 8 minutes of CPR.
why?

stop?
please.
I'm so sick of it.
Everything i think about seems to have to do with cystic fibrosis.
cystic fibrosis.
all the time,
cystic fibrosis.

I confronted my world history honors teacher about it, so he knew why I might be absent a lot, in the case that I may get sick again this year.
As you all know, I am EXTREMELY open about it.
But for some reason, I felt as though I were a little kid again,
ashamed, scared, embarrassed.
I froze up, my lip began to quiver, my heart raced and I couldn't catch my breath.
Tears streaming down my cheeks.
Really? Wow.
It crept slowly through my lips,
that ugly name that burns my tongue.
cystic fibrosis.
I hate this damn disease.
I miss emily haager.
I love to surf.
and THAT is all.

Today is a day where I feel worthless to this world.
I did nothing to contribute, instead, I gave for myself.
I've felt like crap, thanks cystic fibrosis.
Headache, all day.
Heart ache, for somebody that I shouldn't be aching for. Sorry Mom. I love you.
Back ache, when I sit, stand, lay down, or walk around.
Jaw ache...really? a JAW ache?
Lung ache, cough cough coughing.
2 additional treatments to soothe, but the effects seem to wear off.
Sinus rinse? Still headaches.
I can't find the ibuprofen, too lazy. I guess that means I shouldn't be complaining about all this stuff.
I'm just in the mood, I guess.
Exhaustion. All day. Everything adding to exhaustion.
I slept for 3 1/2 hours, it kind of helped.
Woke up to acid reflux, gross. I love Tums.
I took the coldest icy shower of my life, to wake me up.
I'm awake.
I ate dinner, it was yummy, but I ate it quickly because its one of the only things I've eaten today, so I feel a little sick to my stomach.
People will read this; everything is not as it seems, Carly.
Strong all the time? I think not.
Compliments, everywhere. Is this what people compliment on?
A blog post complaining?
Am I really that strong?
Because I'm feeling significantly weak right now.
I'm not living up to what people rave about.
Man, I hate cystic fibrosis.

I'm surfing tomorrow morning, with my friend Mikayla.
You better not repeat yourself tomorrow, CF.
I swear I will punch a hole in my wall.

It's just been one of those days.

Today, I went to a surprise party for one of my best friends, Kana. It was coordinated by my other friend, therefore, more friends were there. It was fun :). I thought I might include this in my post because it was an overall awesome day spent with buddies, which was nice since it gave us a chance to see each other before a lot of us (including me) leave on vacation.


So, this evening, I had an interesting train of thought. It kind of "woke me up", in a sense. Maybe that's not the right phrase. It was more like an reminder of the past few months I've been living. I had this train of thought about Pipeline To A Cure. I started thinking about how sad it would be, with the big loss to the CF community. This is how my mind 'said' it:

"It's going to be so sad this year. I wonder how Emily is going to be able to write her speech".

It popped into my mind so quickly, that I didn't even realize what I had just thought. It won't be Emily. It will be ABOUT Emily.

Interesting, huh? Maybe this means I think about her so much sub-consciously that she's still alive to me. She is alive to me. Just not in the normal human form.

Anyways, I thought I would share that tidbit. Why? Well, why not? ...I mean, a blog is for blogging about what's on a person's mind. That was on my mind.

I guess that's it. Have a good father's day tomorrow everyone :).

Carly

I thought everything was beginning to return back to normal. I didn't brace myself for this aftershock.


She was a mentor, a friend, and an amazing advocate for CF. While I couldn't talk to her face-to-face (cystic fibrosis restricts that), I still found joy in talking to her over the web. Even in her toughest moments, she held on with a strong grasp, and always had a smile on her face. I wish I could say the same for myself right now.