Visitors :)

Showing posts with label hope. Show all posts
Showing posts with label hope. Show all posts
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

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

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.

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.




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.

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


 [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

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


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.