Visitors :)

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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Blogging Withdrawls

Posted on 11/06/2010 09:44:00 PM
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

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Posted on 9/18/2010 11:34:00 PM 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.

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Returns.

Posted on 9/11/2010 03:35:00 PM 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.




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One of those days...

Posted on 7/27/2010 07:50:00 PM 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.

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LaLaLaaaaaa

Posted on 7/20/2010 08:47:00 PM 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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 [This was supposed to be posted several days ago, but I've been busy trying to upload photos and such. Sorry guys!]


I have plenty to share with all you SFTM [ShootForTheMoon] followers.


First, I want to acknowledge the Jones Family. In my last post, I disclosed the grave state of Conner Jones, a 7 year old boy who has cystic fibrosis and Prune Belly Syndrome. His whole life has been an enormous fight---PBS is a condition that basically means he has no abdominal muscles. Without abdominal muscles, Conner was unable to cough out any of the mucus in his lungs. Coughing out this mucus is crucial for people with CF, because it rids the lungs of a portion of the mucus and decreases the chances of infection. He passed away on June 25, 2010. Conner is the only person EVER to be diagnosed with both CF and PBS. I did not know the Jones' personally, but I was able to follow Conner's updates, diagnoses, conditions, and lifestyle via his mom, Sarah's, blog. I will post a link to it underneath, but a quick "viewer discretion" : GO GRAB A TISSUE BOX BEFORE READING.


http://notsobrightandshiny.blogspot.com


With that sad news, I shall move on to happier things.


So, as a few of you have noticed, I haven't posted any new posts on here in a couple days. That, my friends, is because I've been inhabiting a log cabin in northern Idaho with my dad, three siblings, grandparents and aunt, and have had no internet connection. Let me just say, that I know it's SUMMERTIME because I can't remember what day of the week it is right now. Each day has been going day-to-day-to-day with some new adventure, and its been awesome.


So a couple days ago (again, I can't remember any dates), we arrived to Idaho after a 12.5 hour drive. Excruciatingly long. My butt has never been so sore. 


That night, we explored the log cabin and all of its taxidermic wonders (believe me, there were a lot), then set off for Yellowstone the next day. We were only 20 or so minutes away from the Yellowstone entrance, so it was kind of a nifty location we were in. In those twenty minutes of driving, we drove through Idaho, Montana and Wyoming. Cool, right?


So for the next two days, we were exploring Yellowstone National Park. Like most of the tourists, we were busy snapping pics of steaming pools and exploding geysers, such as the well-known Old Faithful. In addition to YNP, we went shopping and I bought a pair of moccasins, while my sister, Hannah, bought a cowboy hat. Love 'em.
Old Faithful :)


Our third and last full day in the cabin, all of us (except for my grandparents), went on a horseback ride around Silver Lake, not too far from where we were staying. My horse's name was Desert Rat, or Rat for short. It was the most gorgeous hoseback ride I've ever been on. One minute we'd be walking through the forest, the next we were in the middle of a flower-filled meadow, then we'd be alongside the lake. It was amazing. The funnest part was when Hannah and I would slow our horsies down, then nudge them to make them gallop :).


CL + DR

That night, we had a crazy, crazy thunder storm. There was pink/red lightning that lit up the entire sky. If you want to check it out, I will have a video on my youtube channel sometime soon.


The next morning (this morning), we packed up our stuff and drove south about 5 or 6 hours to Salt Lake City, where we are currently staying. We will be here for just tonight, then we're driving a couple more hours tomorrow.

So yeah, that's my update on our vacation. I don't have much else to say...

OH, yes, I would like to thank Mike Squier real quick for letting me borrow the camera (see last post). I think the pictures I'll develop are going to turn out pretty good! (Let's hope so...)


lovelovelove.

ALSO, I received a text from my wonderful mother, Lori Lindmeier. Turns out, Cayston's been delivered to my house! Yay! :D

Also, I would like to ask a quick favor of all my readers. I want my blog to be "out-there". I want people to know about it. If you guys wouldn't mind, could you pass my URL around to people? Maybe a Facebook link, or an email, or something? I currently have 8 followers. I'm not complaining, I love my 8 followers :D. I just want to spread the word :).

I love all of you guys to pieces, even those of you I don't know. Nobody knows how happy I get inside when an unexpected person comes up to me and compliments me on my blog. It's VERY much appreciated!

Have a great rest of the week, lovelies <3.

Carly

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Realizations

Posted on 6/24/2010 09:38:00 AM In: , , , , , , , , , , ,
Hey guys,
There are a couple things I wanna share in this post. First I shall share this week of my existence with you, then some thoughts and a request from me to everyone.

So a couple days ago, I was with Mike Squier. He's the photographer for Ambry Genetics, and is, in my mom and mine's opinion, the best photographer we've seen. He has an amazing eye and incredible talent. Not only that, but he's a great videographer. Anyways, I'm not going to disclose what we did with him, because I'm not sure he'd want me to tell.

Click here and check check check him out.

Here's another reason I love him:

I told him how on Thursday (today) I was leaving on a road trip to Yellowstone. He noticed I have recently taken an interest in photography (nothing crazy, I just like taking pictures). I have a Nikon point-and-shoot camera, so nothing incredibly fancy, but not some cheap digital camera. I love my camera. Anyways, Squier offered to let me borrow one of his old Nikons! It takes film, and its a LEGIT camera that comes in a special case with lenses and all. I'm seriously SO excited! I have pictures of it, which I will post later. In currently in the middle of nowhere so I have a feeling uploading pics dependent on a Sprint WiFi  air card will take forever. Anyways, he told me it was his first camera he ever purchased on his own. Do you guys realize how special this camera is? I personally have a love for sentimental items (maybe that's why my room is full of so much unnecessary crap). I feel so honored that he lent me this one, and I'm flattered that he trusts me so much! I can't wait to shoot some awesome pics. Love you, Squier!


Alright, so like I said, me and my Dad's side of the family left for Yellowstone today. Actually, Yellowstone is just our main destination. We left at 5:30am this morning, and will be traveling a total of 10 days. We're going to be in St. George, Utah tonight. Among the places we will be staying are Utah, Idaho, Montana, Wyoming, and Nevada. Super duper excited :). I'm able to get internet because, like I had mentioned, my lovely father acquired a Sprint Air Card that plugs into the USB port on my laptop and connects me to the internet.

Also this week, I had a CF follow-up appointment. I finished my oral antibiotics this week, but based on my PFT's, I'm continuing my inhaled TOBI (ewww). They were up from last time a few pecent (from mid 80's to mid & high 80's). I am returning to my baseline, slowly but surely. They're keeping my on TOBI in order for my to return to the 90's.

When I'm sick, my PFT's are usually in the 60's and 70's. When I see those numbers, I want to boost my numbers back to the 80's and 90's. My mom, who is my rock and my support line, freaks out. Not in a bad way, but in a way that says "hey Carly, you're sick. Let's fight this bug". Next time this happens, I'm not going to deny that I'm sick, but I don't want to make a huge deal about it. I know that there is a fine line between making it less of a deal and acting careless. I am NOT going to be careless, I will fight the bug like I would normally, and be as passionate as I usually try to be. I don't even know if this is all making sense. I guess what I'm trying to say is that there are people with CF who would be thankful to have the PFT's I have. In fact, many would be glad to have 60's and 70's.

There are thousands of cysters and fibros living on the transplant list. Thousands living on several litres of oxygen daily. Thousands hospitalized on a regular basis. Yes, a lot of them are in this situation because they aren't as proactive about their health as they should be, but some aren't. Some work as hard as me, but still end up that way. I just feel like I have a reason to be thankful. Thankful for my mom who pushes me to my wit's end, thankful for a distressed, yet functional pair of lungs, thankful for the ability to live a generally normal life. Yes, I give up a lot of time to take care of myself, and I miss school and events when I'm sick or have doctor's appointments, but I am relatively living like a teenage girl. I am thankful for my God, who gives me faith.

This whole spiel is leading me to talk about somebody (actually a whole family) that's been on my mind for a while. Sarah Jones is the mother of Conner, who has both cystic fibrosis and a rare condition called Prune Belly Syndrome that causes him to lack any abdominal muscles. He is the only one ever to be diagnosed with these two conditions. Do you all realize how terrible a combination those two diseases are? Conner is UNABLE to cough out anything from his lungs, because he has no abdominal muscles. His mom blogs about his condition on a regular basis. I will post a link to her blog, "Not So Bright and Shiny" , but I must warn you all, it is incredibly hard to read. This last post, posted yesterday, was one of the saddest blogs I've ever read. I was crying the whole time. She basically has blogged to everybody about the probable possibility of her son's death arriving soon. If you read older posts from her, you can tell that the death of Conner has been a constant thought that's been hovering over the entire famly since his birth. He is seven years old.

All I ask is that you pray for the Jones Family during this difficult time in their lives. Pray that whatever God's Will be for Conner, whether it be constituting a miracle for this sweet boy or having him live with the Lord, that the process be painless and easy for him. Pray that somebody cure these diseases.

Thank you all. I do not know this family personally, but Sarah's blog is somewhat popular in "the CF world", so she is in the hearts of a lot of us cysters and fibros.

I love you guys!
Carly

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An Innuendo

Posted on 6/19/2010 10:10:00 PM In: , , , , , ,
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.


Kana left, me right.
"Best friends forever even after we die and go to a better place",
aka BFFEAWDAGTABP :)


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

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Summerlicious

Posted on 6/18/2010 03:45:00 PM In: , , , , ,
Hey guys :)
Some of you may have noticed I haven't posted in a while (yes, a week and a half is a while for me). That is the fault of FINALS *shutters*. I'm done with school, finally, and I feel a huge weight lifted off my shoulders. Anyways, time to catch up!

Saturday, June 12th:

That morning, I went surfing with Mauli Ola. I lovelovelove it. I've missed surfing SO much, and I feel amazing afterwards. All of you cysters and fibros wouldn't believe how awesome my sinuses feel after a session. Anyways, I also love seeing those Mauli Ola boys :). We went to Newport; it was really choppy and the waves were being annoying, but there were 2 pluses:

1. I got this cute senior (just ended junior yr) to be my instructor. He's from North Carolina. :D

2. There were dolphins that swam 10 feet in front of me!

So yeah. I hope I get to go out more often this summer!

So, a hot shower and a long nap later, my sister and mom went to FishFest :). The Fish is a Christian radio station that holds a festival with all these artists and bands playing. It was super fun. We met our friends there, who have a son my age and a daughter younger than me both with CF. Don't worry, we kept our distances. :P

                                               A view of the crowd from our seats :)


                               Speaking of Mauli Ola...:) (Abby, holding balloon, has CF)

Anywho, I slept well that night.
                                                      
Mon. June 14, Tues. June 15, Wed. June 16:

Testing. Boo. I studied like crazy.

Wednesday was the last day of school :). I went over to my friend Mikayla's house for swimming and chilling and yeah. Summertime bliss.


My first jumping into a pool of summer 2010 :) [Mikayla in the background]

Thursday, June 17th (Yesterday):
The first day of summer! I slept in, wore pajamas all day, and made a stop motion in honor of the season:


(For those of you are are my facebook friend, you may have already seen this.)
Amateur. :P. Hopefully not for long...

Friday, June 18th (Present):
Hung out today, woke up semi-early (9:15) and felt very organized because I didn't put my treatments off until 11 or 11:30. (indulgence into the secret life of Carly Lindmeier). I got blood drawn, but no biggy. Just to retest for Vitamin D levels. After, my brother Matt, mom and our friend who is a year older than Matt (Lauren) rode beach cruisers down to Albertson's and ate fudgesicles. Yum :D


                                           They're so cute I can't stand it sometimes :D

Alright, I'm gonna go watch Lost with the family. We're watching every season. Almost done with season uno :)
Adios, lovelies!
Carly




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So you're probably wondering what I mean by "the banana diet". My mom got a HUGE box of bananas from a friend. Seriously, I've never seen so many bananas before. It's kind of awesome! I love bananas. So, I'm going to be very potassiummy by the time that box is empty.

Banananananananananananananananas.

Also, last Sunday, I went stand up paddling with the CF Foundation Southern California chapter, who created the event to promote their surfing gala, Pipeline to a Cure, which is occuring in July. It was SO fun. Definitely doing it again in the future. The place we went to was at a bay, and was very close to the place my Dad's side of the family goes camping each year...how convinient :). While there, I got to reconnect with a bunch of people, which was another plus.

Anyways, I had TWO doctor's appointments today--a CF follow-up appointment for my sick appointment a couple weeks ago, and a sinus appointment to see whats up with these headaches.

My CF appt was better than the last one for a lot of reasons:

1. My PFT's are slightly up. Not drastically, but they are definitely in the right direction. I'm continuing Levaquin and breathing abx until my cycle for both is over (10 more days or so).

2. My sputum culture shows that I only have just 1 STRAIN OF PSEUDOMONAS. Wow. Last culture, I had 3. I'm really pumped, and eager to blast this bug out. If I can do that, I'll be PA free for the first time in YEARS. :D

3. Cayston is approved! Those w/out CF don't even KNOW how gross TOBI is...not to mention, how long it takes! Cayston will be replacing TOBI. Yay! I was on the Azli study (Cayston before it was approved), but got sick right afterward, so we all just assumed I was on the placebo. So, with that said, I don't actually know how the Cayston will work for me. I'm hoping and thinking it will be good, because its used with a different machine that makes the breathing treatments take less than 5 MINUTES. HALLELUJAH.

4. I got a lot of compliments for my compliance with CF today. Thanks everyone, but I must say, I would not be this way without my family, more especially, my mom. She is amazing, and pushes me to my limits. That, my friend, is a GOOD thing. Because of her, I am alive and healthy. Love you, Madre.


Okay, now for sinuses:

I told my ENT about my sinus symptoms, and he wants my lungs to be in better shape before he does anything...SO, once I finish my cycle of Levaquin, I'm getting a CT scan. I'll update you guys once that happens.

That's pretty much all I have to say for today. Love you all!

Carly

P.S. I just reread this post, and realized that anyone without cystic fibrosis would be very confused.

sputum culture= a "test" the lab does on mucus in my lungs to see what bacterias are growing in my lungs.

PFTs= stands for Pulmonary Function Test. It is a test done by me to see how good my lung function is. It's interpreted by calculating the percent of lung capacity I'm using based on what's expected. (Ex.: Today one of my PFTs were 87%. This means I am using 87% of what is expected of a 15 year old, 5'1", 120 lb. female's lungs).

Pseudomonas (PA)= a bacteria commonly found in my lungs, which causes lung infections like bronchitis

strains= Each strain is a different "species" of a bacteria (PA, in this case), which may or may not need to be treated with different antibiotics.

TOBI= a breathing treatment I take every other month. It is an antibiotic. I started my month-on, month-off cycle early to get rid of bacteria such as PA

Levaquin= an antibiotic in the form of a pill that I'm taking in addition to TOBI to get rid of bacteria such as PA
Cayston= a breathing treatment that would be replacing TOBI. It's used with an eFlow, versus my normal nebulizer, and reduces the treatment time from 20+ minutes to 5.

Hope this helps!

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Music

Posted on 6/05/2010 10:58:00 PM In: , , , ,
Why am I blogging about music randomly?

I don't really know.
I guess it's because I am so moved, so inspired by it, that it compels me to write.

Over a year ago, my 4 gig ipod nano was running out of space. I had some money saved up, so I planned to buy myself a 16 gig ipod touch, which would allow me to listen to my heart's desire. I proposed my idea to my mom, who responded with "You ran out of space? Just take a couple hundred songs off. It's not like you listen to all 1000 songs!" (or something along those lines). I tried that, and found myself upset when I was in the mood for a song that wasn't on there. Needless to say, I bought the ipod touch. Now I have 2000 songs, haha. 

I'm an acoustic-cover fiend (as you can see by the majority of the songs on my playlist). I love alternative and am a sucker for a sick electric guitar solo. Country? Not so much. Pop? Ehh, depends on the song or artist. Rap? No.

I bought my mom and I tickets for a March concert of John Mayer. Basically, I love him. I put one of my favorite songs by him on my playlist (In Your Atmosphere).  Not the best picture, but that's him. Yes, he's politically incorrect, yes a lot of people don't like him, but his raw, stripped talent is overwhelming to me. I seriously love him.
Isn't it funny how listening to just one song---no, one PART of one song, floods you with memories? I often make the mistake of listening to the same playlist/artist/song during times I don't want to think of. For example, every time I listen to the album Death and All His Friends by Coldplay, I remember the time I was in the hospital in Feb 2009 for the first tune-up since I was an infant. By the way, I didn't listen to the album because of it's title. I listened to it because I love the songs. I'm not a melodramatic person. :)

One thing I bet you didn't know, I am constantly watching YouTube videos of people I do not know covering songs I love. (Hint hint...links).

Anyways, what was the point of this post?
I'm in a really musical mood, but unfortunately am too tired to articulate how much I adore it.

Goodnight sweet world :)

Carly








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My Love :)

Posted on 6/01/2010 11:07:00 PM In: , , , , ,
Today was fun :D
My friend Mikayla made me a tin-can telephone (THAT ACTUALLY WORKS :O) so I can talk to other people with cystic fibrosis from a distance so I don't get sick! She designated one can for me, that no one with CF is allowed to touch. The other can, I'm not allowed to touch. She put a plastic cover with a little hole on the CF can, so that we can simply wipe off the germs. I love her. Like, seriously, this is the coolest thing ever.


Also, I saw my best friend Jamie Baker for the first time in 8 months (she lives near Sacramento)! Yess. I love her to death. Her mom has CF, so that's how we know their family. Seriously, the best family ever. I love all of them. LoveLoveLove. Love.

We chilled at Knott's after we got out of school. Oh man, were we hyper! Haha. My writing is kind of fast and weird because it's so late, so I'll wrap it up with some pictures :).



Standing in line for some ride
Tammy, left and my Mom (Tammy has CF, she's Jamie's mom)
Me, left and Jamie McJamers :D
Annie (Jamie's sister) and Hannah (my sister) :)
Best friend love <3


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Looking Up?

Posted on 5/30/2010 04:51:00 PM In: , , , , , ,
Hey all,
I've had a frustrating week (not going to get into details, but just basically sick of CF), and forgot to tell everyone how my appointment last Thursday went.

It was no surprise that my PFTs were down about 20%, based on how I was feeling. I'm actually surprised they stayed that high (March, they were in the 90's, this time they were in the 70's). While 70's aren't my BEST, they aren't my WORST either. I was prescribed with oral antibiotics, a pill (Levaquin) only once a day. Yay! I'm also continuing inhaled antibiotics (TOBI), which I normally take every other month anyways.
lungs

BUT, I'm thankful that I won't have to change my wardrobe for IV's (confused? Here's a hint: my portacath is placed in a place where having it accessed means it's more comfortable to wear sports bras for 3 weeks. No me gusta.) Plus, I avoided the hospital and having to take a bath for 3 weeks. No me gusta tambien. So, all in all, a good and productive appointment.

Since I'm on the subject of doctors, I must say, I absolutely LOVE the new doctor (well, not really new anymore, but new to us since we've only seen her a couple times). Her name is Dr. Moser. She's a petite little spitfire of a doctor---just our type! She jumps on to ideas my mom has...not crazy ideas, just productive and GOOD ideas, that other doctors like Dr. Y would ignore. *Plays wicked witch theme*. Haha :D. Like, when my mom told her she supplemented me with 50,000 IUs of Vit. D a day for a month, she thought it was a great move on our part. I love equal patient-doctor relationships! My endocrinologist is also this way. How funny, they're both asian. I love asians. :D

Anyways, I'm glad I'm past this giving up stage of my CF teen life. I mean, for now at least. It's good to know I snapped out of it. Maybe it was the church this morning that switched my thinking. Love you God :).

I thought this quote/picture thingy would be appropriate for how I'm feeling :)


Anywhosers, adios world :)

Love,
Carly


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Fallen

Posted on 5/29/2010 09:55:00 PM In: ,
When your hope is gone,
& You can’t find any way out,
& You feel you’ve lost it all,
You say you feel the same self doubt-
I won’t fall this time;
I’m not going anywhere.
I’ll be right here by your side;
So stop me if you really care.


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Posted on 5/27/2010 09:57:00 PM
Why?
Why am I here?
If our destination is to be with the Lord,
and the way to get there is to Believe, and then die, then
Why do we wait so long?
Why do we go through struggles, and pain, and stress,
Why do we go through sadness, and sickness, and crying fits,
If all of us Believers go to the same place,
Why do we wait so long?
Why not now?
I don't get it.
I'm supposed to work hard every day.
I'm expected to throw my social life out the window.
I'm forced to breathe differently.
Why?
Am I supposed to keep myself healthy?
Or am I supposed to live my life to the fullest?
I'm confused.
I want so badly to give up.
I want so badly to live, and then die
Like any normal person would.
I'm not wanting to die now,
so don't misinterpret.
I just need some enlightenment.
Some motivation to live.
Someone to just explain,
Why?

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I've been feeling it...

Posted on 5/25/2010 07:15:00 PM In: , , ,
So lately I've been feeling down. Not sad, but sick. It's interesting; when I was younger, I never really knew when I was sick. Every time I needed IV or oral antibiotics it just seemed like "the routine" for fighting some bug. But I never really FELT the effects of the bugs until my teenage years.

Anyways, I've been feeling the bugs lately. My chest has been tighter, I've been congested in my lungs and sinuses, I've been coughing a lot more, I've been EXHAUSTED, and my blood sugars have shot up. I'm hoping my PFTs (pulmonary function tests) aren't too bad. The docs base what kind of antibiotic I'll need on three things: my PFT's, my culture (what's growing in my lungs), and how I've been feeling. If everything is on the downside, I usually opt for IV antibiotics, and if they aren't terrible, I go for oral.

I'm not sure how it works with the port and IVs. This is my first time accessing it (except for when I had it placed), so I don't know if I'd need a hospitalization. Even if I do, its no big deal. Just a tune-up.

Anywho, time for homework make-ups and a nap. *yawn*
:)

-Carly

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Aftershocks

Posted on 5/20/2010 07:31:00 PM In: , , ,
What are earthquakes? Earthquakes are the movement of the Earth's plates, causing disaster and destruction surrounding the epicenter. When an earthquake occurs, many people panic and worry for the next day or so, but what they don't prepare themselves for is what's coming next: the aftershocks.

These evil little spurts of catastrophe can be as powerful-or even more powerful- than the initial quake. Did anybody ever stop to think, maybe these rhythmic natural disasters resemble our life more than we thought?

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

It hit me hard, like a baseball bat over the head. I can't remember if it was as worse as the first earthquake, back almost 3 weeks ago on May 1st, because most of the memories of it are blurred now. All I know is that these aftershocks are causing damage.

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.

I love you, Emily Haager.


Rest in peace.




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May Twenty-Ten.

Posted on 5/18/2010 09:41:00 PM In:

May is National Cystic Fibrosis Awareness Month.
                                                      

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Lindsay's Lungs

Posted on 5/17/2010 09:01:00 PM In: , ,
Great video from a fellow cyster :)


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The Point is...

Posted on 5/16/2010 10:17:00 PM
The point of this blog is to document my journeys.
The point is to provide an inside look into me.

The point is for people to read my posts and say, "Hey, Carly has cystic fibrosis, but cystic fibrosis doesn't have her."

 The point is to
(don't you love how I used the picture? Haha :D)




I love you all.
Come with me. :)

-Carly



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