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Showing posts with label sinuses. Show all posts
Showing posts with label sinuses. Show all posts
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.

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


Banana Diet, Stand Up Paddling & Double Appointments

Posted on 6/08/2010 09:41:00 PM - by Carly Michelle In: , , , , , , , , ,
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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