At Our Fingertips

Hello World!

Cystic Fibrosis is a mean disease - I don't think there are any nice ones - but CF has been a real bitch lately. Not just for me but many of my Cysters and Fibros (as we sometimes call each other). Before I joined twitter a few years ago I didn't know anyone, other than my brother, who had CF. Now I know TONS of people. Siblings, friends, parents, and of course CFer's themselves. Its crazy!

Its also bittersweet. They say ignorance is bliss. Well I was never ignorant to Cystic Fibrosis but I was never waist deep in the CF pool either. I was always sitting on the edge with just my toes in the water. I'd hear about stories on the TV news or read about it in the paper. But it was always just "bummer" because they were just names to me. I didn't know them. Sure it was sad to hear about them passing but it didn't really effect me. Now, I talk to other CFer's and people connected to CF everyday, I'm swimming along right beside them.

The last few months have been incredibly hard for the CF community. I have read about several passings.. and I mean several. So many I've lost count! They all seem to be young people too.... 20-30. Come on! Thats my age range! That's scary. Everyday it seems like one of my CF friends are heading to the hospital for a tune-up. I, myself have been like 6 times in the last 2 months. I'm so glad I've met all these great people (the sweet part) through the Internet but reading about someones passing means more to me now (the bitter part).

Whenever I feel like CF is starting to get an edge on me, I love to read "No Ordinary Boxing Match." I'm going for the gold!!

Not Your Ordinary Boxing Match
Having several fatalities under its belt Cystic Fibrosis remains the undefeated champion. Life with CF is like a boxing match. Except the rounds last for months and the fight goes on for years, not just an hour or two. Like a boxer training before and after each fight, we do our training before and after each day. Only instead of being in a gym working out with weights, we're at home taking a handful of pills and doing over an hour a day of nebulized breathing treatments and vest therapy. We fight as hard as we can, but no matter how hard we punch or jab at our opponent, it hits back harder and harder. Then just when we think we have the fight under control and doing good. BAMM! Out of nowhere comes an uppercut, then a right hook and a left and blow after blow. Then just as our opponent has us against the ropes getting ready to deliver the final uppercut to put us out and win, DING! DING! the bell rings. Its the end of the round. Instead of going to our corners to talk to our manager and get some water and clean up, We go to the hospital to talk to our doctors and get some IV antibiotics and get cleaned out. After 2-3 weeks of that, DING! DING! we get out and start next round. Like a boxer going into the round with a little rest and a few jab wounds, we start out strong, then it turns into a repeat of the last round.Then after round after round it is the same thing, like a boxer getting beat up more and more, getting weaker and more tired as each round passes. You keep fighting the best you can. But like a boxer in the final rounds you begin thinking, "Should I give up?" "Should I throw in the towel?" Like a boxer who really wants the champs belt, the answer is no. You keep fighting as hard as you can fight and say to yourself, if my opponent wants to remain the champ, he is going to have to earn it, because we're not going down without giving it our best.

I began my fighting career almost 29 years ago on April 30,1976, the day I was born. Though I know I will not be able to defeat my opponent I know it someday will be defeated and people like me will not have to spend their lives fighting each day they live or for each breathe they take because they will have the cure to defeat the opponent. I just hope they think back to those of us who gave our lives, to be studied and monitored and fights be documented by the CF team so they could find a way to defeat CF and say Thank You. ~ Jamey Carver

This was written by a fellow CFer. He lost his fight against CF on June 3, 2006. While I never knew Jamey, I read about his story on a website that was submitted by his sister, Megan Carver. She wanted to share her brother's inspiring words and create awareness for CF. She continues to fight in Jamey's memory.

To all the CF Angels, we will continue the fight. We have CF up against the ropes with Kaleydeco. A cure for all is at our fingertips.

Breathe Easy

These Times

Hello World!

Most people will say Music helps them through any situation. I'm one of those people. Music is such a powerful form of expression. There is so much emotion in music that you sometimes can't get from written words. There are some many genres of music in the world that it is impossible not to find something that tickles your fancy. I happen to like all kinds of genres, from pop to country to oldies to rock to rap. I like music with a good beat that I can sing along to. I also love a song that tells a story.

Depending on how I'm feeling makes a difference as to what I listen too, like most people. I recently heard a new song called These Times by a band called Safety Suit. I heard this song and immediately thought, "Holy crap, that's my life!" I think that song describes my life as of right now, its EXACTLY how I feel. Its been on repeat for about a week now. So thank you Safety Suit, I love it!

These Times:
These times will try hard to define me
And I'll try to hold my head up high
But I've seen despair here from the inside
And it's got a one track mind

And I have this feeling in my gut now
And I don't know what it is I'll find
Does anybody ever feel like you're always one step behind?

Now I'm sitting alone here in my bed
I'm waiting for an answer I don't know that I'll get
I cannot stand to look in the mirror
I'm failing
I'm telling you these times are hard
But they will

And I know there's someone out there somewhere
Who has it much worse than I do
But I have a dream inside, a perfect life
I'd give anything just to work
It's like I'm only trying to dig my way out
Of all these thing I can't

And I am
Sitting alone here in my bed
I'm waiting for an answer I don't know that I'll get

I cannot stand to look in the mirror
I'm failing
I'm telling you these times are hard
But they will pass,
They will pass
They will pass
These times are hard
But they will

These times will try hard to define me
But I will hold my head up high

Sitting alone here in my bed
I'm waiting for an answer I don't know that I'll get
I cannot stand to look in the mirror
I'm failing
I'm telling you these times are hard
But they will pass

And I know there's a reason
I just keep hoping it wont be long 'til I see it
And maybe if we throw up our hands and believe it!
I'm telling you these times are hard
But they will pass
They will pass
They will pass

These times are hard but they will pass"

Breathe Easy

We Fondued!

Hello World!

HAPPY NEW YEAR!!!!

I'm starting of 2012 in the hospital. My parents came to the hospital and had dinner with me. We did fondue! First a beef broth and had some steak. Then we had chocolate fondue for dessert. It was delish!! I was glad they both came up and visited.

Home is about an hour away so My dad doesn't make it to the hospital very often. Its a long time for him to have to sit in a car. Its a risk every time for blood clots. My mom visits every few days. It helps me keep my sanity.But they both came for dinner and then my mom stayed overnight. It was nice.

We both barely made it to midnight. But we did make it! The next morning we slept in. Had our mid-morning chat with the doctors and then chit-chatted ourselves. Then my mom wheeled me around the hospital on a quest for lunch. She is not a great wheelchair driver haha. She knows it, shes getting better. After lunch we watched a movie. We watched Horrible Bosses. Funny. We were both laughing out loud in the room. It was fun. After the movie she headed back home. It was a good day. Probably the most relaxed day I have had in a long time.

I've been asked by a few people what my resolution for the new year is. I don't have one. the last few months have been really hard. Physically and emotionally, so for 2012 I'm not expecting anything. If I don't expect anything I can't be disappointed, right? I just want my transplant and to start my 'new' life. Nothing more and nothing less. I'm ready.

Breathe Easy