Visitors :)

Gimme a break, pun intended.

Posted on 12/19/2010 12:11:00 AM - by Carly Michelle
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. 

Today...

Posted on 12/17/2010 01:19:00 PM - by Carly Michelle 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.

Blogging Withdrawls

Posted on 11/06/2010 09:44:00 PM - by Carly Michelle
So I am frequently checking my blogger to update myself on all the blogs I follow, but tonight I noticed that it has been about a month and a half since I've posted anything. LAAME.

Nothing much has happened with CF. Actually, nothing crazy has happened in my life. I've stayed pretty healthy (although I sense an infection creeping up on me...:/). It's been 7 months since my last hospitalization. All time record since 8th grade? I think so ;D.

My sophomore teachers really like homework, so I haven't had time to sit down and just write. But, of course, now that I HAVE time, I don't know what to write about.

OH, I might start vlogging on my youtube channel. Sooo, subscribe and share! It will be similar to this blog, and I will update when I have a new vid on here. What do you guys think? 

This post is super short, I know. But maybe the fact that I don't have much to talk about is a good thing? I mean, at least I'm not talking about depressing stuff.

Alright, I love you guys <3

Carly

Posted on 9/18/2010 11:34:00 PM - by Carly Michelle In: , , , , , , , , , , , ,
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.

Returns.

Posted on 9/11/2010 03:35:00 PM - by Carly Michelle In: , , , ,
Hey guys.
Yeah, I know. Its been over a month that I've written a post.
I'm so LAME. Sorry :(.

So many things have happened, that I'm only going to update recently. I started school sep. 1st as a sophomore in high school. In english 2 honors and world history honors, the homework load is ridiculous. So, that's a little excuse as to why I haven't written :).

Anyways, I wanted to share an essay I wrote this week for English. Our assignment was to write a paper on a choice we made that changed our life. It's not the best thing I've written, but I'll share it anyways :





Carly Lindmeier
Ms. Brunasso
English 2H
9 September 2010

Being Me

Every day, people make choices. What to eat? What to wear? What to watch? These choices make up our day, and they create the type of person we become. While these minuscule selections mean nothing in the long run, there are certain choices that stick with you for the rest of your life. These important choices change you, mold you into a different type of person, whether it be physically, mentally, spiritually, or a combination of the three. My life-altering choice was made in the fifth grade. But, before getting to it, it is crucial that I share some background information about myself.

At the delicate age of three months, the doctors told my parents I was born with cystic fibrosis, a
genetic condition that alters the function of the pancreas, the digestive system, and mostly, the lungs. Ever since that fateful day, I have spent countless hours managing my health. I take handfuls of pills daily, and spend at least an hour every day inhaling nebulized medication to minimize lung infections. Whether I like it or not, cystic fibrosis is my life. But, in the fifth grade, I made the decision to not let CF define who I am.


For almost all of my elementary school years, I was embarrassed about my health. I didn’t want people to know why I was absent for doctor’s appointments, why I needed to take pills before lunch, or why I had an IV line in my arm when I had lung infections. I told only my closest friends; even then, the process made me scared out of my wits. My heart would race, and the same, generic words, “I have cystic fibrosis”, would stutter out through my lips. Cystic fibrosis was, to me, a huge secret.


It was the time of the year for the human body unit in fifth grade. Each student in my class of ten-year-old peers were required to chose an organ in the body for which they would research and write a report about. I chose the lungs, for obvious reasons. The date our reports were due, everybody was expected to be prepared for a mandatory presentation of just one section of their report. As my peers went up and presented, my name was nearing closer and closer on the teacher’s alphabetical list of kids. I took the time I had left, and considered which part of my report to present; should I tell about the main functions of the lungs, or should I explain how they worked? It then occurred to me: my introduction to my report explained why exactly I chose the lungs, which disclosed the fact that I have cystic fibrosis. Choosing to read my intro to the class would be a perfect opportunity to explain my condition to everyone, and it would make me less fearful in future circumstances.


My name was called, and I apprehensively got up from my seat and walked to the front of the room. I had maybe ten seconds to decide what part of my report I would read, and in the last split second, I chose to read my introduction and reveal exactly why I chose to use the lungs as my organ. I read and stuttered nervously, and my legs felt like they would give in at any moment. I felt awkward enunciating “cystic fibrosis” in front of everybody, because of the personal secrecy of the term. When I finished, my teacher, who was fully aware of my situation, complimented me on my bravery. It was, from that day on, that I made the life changing decision to embrace my condition.


Today, it is clear that I am not afraid to tell the world that I have cystic fibrosis. In fact, if it weren’t for that choice I made, this paper would not be written right now. CF is a huge part of my life, but I don’t use it as a crutch. I embrace the fact, and spread awareness so one day, a cure can be found. By doing this, I feel like I am giving back to the charities and foundations that are trying to make this happen for me and many others in my situation. This is thanks to the decision I made back in fifth grade, the decision that changed my life forever.




One of those days...

Posted on 7/27/2010 07:50:00 PM - by Carly Michelle In: , , , , , , , , , ,
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.

LaLaLaaaaaa

Posted on 7/20/2010 08:47:00 PM - by Carly Michelle In: , , , , , , , , , , , , ,
Hey everyone :)
Sorry I've gone AWOL. I've been kind of busy, and when I had some down time I either wasn't in the mood to blog or I'd forget. SO, here I am. The last time I blogged was on July 6th, so I will try my best to include everything that's happened. Let's see...I have 2 weeks to make up for.

First, I want to acknowledge that I'm gaining more followers. Fourteen followers, yes, but it's better than nothing :D. Thanks to everyone who is spreading the word!

Secondly, I'll update on an ENT appointment I had. As some of you may remember, I was on levaquin for an infection about a month ago. In the midst of this infection, the sinus headaches that I have always dreaded started to return. I checked in with my ENT about it, and he told me to finish the levaquin, then get a CT scan and we'd go from there. I finished the levaquin shortly after, but went on vacation for 10 days. So, afterward, I got the CT scan and he checked them out and called us sayng he wanted to talk to us. Last time he had called us in to talk to us about a CT scan, he said, and I quote, "You needed sinus surgery 5 years ago". Because of that, we automatically assumed that this time I needed another surgery. NOPE! Turns out he just likes to talk face-to-face with people about their CT scans :). The scan showed some congestion, but he didn't want to default to unecessary surgery because there was air flowing through most of my sinus passages. Yay!

Thirdly, I want to talk about my last vacation: Santa Cruz! My mom's friend has CF and their family lives up in NorCal. For the past 2 years, we've met (almost) halfway in Santa Cruz for vacation :). They have two daughters, Annie and Jamie, who are the coolest people ever :). Some of you guys may remember when they came down and we all went to Knott's Berry Farm together. I love the Baker Family! <3

From left to right: Jamie, Hannah (my sister), Annie and me


Left to right: Tammy (their mom, w/ CF), Annie, my Mom, Hannah, Steve (their dad)

I went surfing on my own, with no instructors :)

Also, I started cayston! It's SO much easier than TOBI; yes, it's 3 times a day instead of 2, but those 3 treatments combined are shorter than one dose of TOBI. I love it. I haven't actually noticed a huge difference in the way I feel, but hopefully my PFT's will show it.

Finally, I want to make a quick tribute to the Mauli Ola Foundation. These guys are absolutely amazing. I can't even begin to express my gratitude toward what they do for me, my family, and the rest of the CF community. They are truly a blessing. If it weren't for them, I wouldn't be a surfer girl, and I wouldn't be as healthy as I am right now. SO, I love you all to death. Every one of you. Don't forget it! :)

To view the Mauli Ola Foundation site, click here, or click on the Mauli Ola logo on the right side of this page.

To donate to the Mauli Ola Foundation, click here.

To view my member profile on the Mauli Ola site, click here.

Thats pretty much all I have to update on. I feel like I'm totally blanking out on something that I wanted to tell you guys. If I remember, I can just re-update this post.
I hope you guys know how much I love you all!

Love,
Carly


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