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Showing posts with label pipeline to a cure. Show all posts
Showing posts with label pipeline to a cure. Show all posts

16 Years

Posted on 8/03/2011 10:37:00 AM - by Carly Michelle In: , , , , , , , , , , ,
Today is August 3rd.
It marks the 16 year anniversary of my diagnosis with cystic fibrosis.
16 years of countless medications, pills, doctor's appointments, treatments & pain.
Thousands & thousands & thousands of simply everything.
15 or 16 picc lines, a few ER visits, a few hospital visits, a port-a-cath placement, CF related diabetes, millions of dollars raised, and too many, WAY too many dying/passed friends.
In 16 years, I've met amazing people dedicated to curing this disease.
I've gone on my dream vacation to Maui for Make@Wish.
I've been on the show 7th Heaven.
I've personally met Celine Dion.
I've met so many cysters & fibros who understand CF like I do; not as a simple medical definition, but as a demanding and draining lifestyle.
I've heard incredible speeches, & I'll be saying one myself this Saturday.
I've had my fair share of memorable experiences and none of them would've occurred if I didn't have cystic fibrosis. 

SO, in spite of how deeply I hate cystic fibrosis, HATE it with all the passion in my body, I cant still stand here and say that I am blessed. CF has shaped me into the person God meant for me to be. Sixteen years later~ I get it. I'm supposed to be this way. Cystic fibrosis is an external disease. It may damage my lungs, my sinuses, my pancreas, my stomach, my digestion, my breathing, my insulin levels, my liver, and pretty much everything else in my body (since everything is connected in some way or another). But there are some things it will never damage: the bonds I've made, the fulfilling live I've lived [SO FAR!] and the will in my body to fight harder than ever before. Oh, & of course, myhope.

16 years ago today, my parents received a phone call. They drove to the doctor, longing for some clarity as to why their infant was so sick, and they received it. Their daughter was now a part of a statistic, part of a 30,000 person rmy fighting this disease. They were scared. They didn't know what my life would hold; if I would be a skinny, barrell-chested young woman, if I would call the hospital my second home, if I would live a normal life, if I would even LIVE long enough to know what a normal life was life. Sixteen years later ~ I have cystic fibrosis. I fight every dat. I know pain, I know sadness, I have seen my friends die. But hell to the statistics. Hell to a median age of 37 years. I have cystic fibrosis, but cystic fibrosis will NEVER have me. 

I've lived with CF for 16 years now. But this is only the beginning.

RIP all of those who have lost their battle. YOU are my inspiration.

"You don't know how strong you are until being strong is the only choice you have." 

An Innuendo

Posted on 6/19/2010 10:10:00 PM - by Carly Michelle 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

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!

Aftershocks

Posted on 5/20/2010 07:31:00 PM - by Carly Michelle 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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