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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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