:: Dum Spiro, Spero

"While I breathe, I hope".

I feel giddily lightheaded as I type this. An indescribable breakthrough took place in the CF community this morning. The first drug of its kind, Kalydeco VX-770, was approved by the FDA to begin treating patients with the G551D genetic mutation. This pill will be taken by patients twice daily and instead of simply treating the symptoms of CF, such as overproduction of mucus, coughing, malnutrition, etc, will actually target the root cause of the disease and prohibit the symptoms from occurring. Quite possibly the closest to a cure that my generation may ever know.

So now, the most common question I'm getting: Am I cured? And the answer is no. There are over 1,000 mutations of the genetic chromosome that causes Cystic Fibrosis. Mine is Double Delta F508, shared with over 75% of the CF population and this particular drug only affects approximately 4%, those suffering from the G551D mutation. In this mutation, a defective protein acts as a locked gate at the surface of the cells, preventing the proper flow of salt and fluid in and out of the cell. Kalydeco helps unlock that gate and restore function of the defective protein, dramatically improving lung function, lowering sweat chloride levels and helping patients gain weight. HOWEVER, the approval of this drug opens doors to fast-tracking other drugs, such as VX-809 which WOULD be my "cure", through the process. VX-809 is currently in Phase 2 of studies with very positive results...Which means within the next 2-3 years, I could begin to live a "CF-less" life. The idea is incredible, almost unfathomable and slightly overwhelming :)

Thank you, first and foremost, Jesus. All of you haters out there can argue that science and man are the reasons that this is happening, but God gave these scientists the brains and knowledge to create the medications that are going to save my life. Thank you to the donors who have given millions and millions of dollars to the CF Foundation on a Hail Mary attempt to do the unthinkable and cure a disease rooted in my DNA. Thank you to my cysters and fibros who have made living with this shitpile of an illness actually worth it. And thank you to my family and friends who have spent days and nights on their knees praying that I would someday live a normal life.

We're halfway there, y'all :)

:: Farrel in Wonderland

Alice and the White Rabbit

If you've ever seen the episode of Friends where Monica and Rachel gamble their apartment away thanks to a personal trivia game against Joey and Chandler, you might remember when Ross, acting as emcee, quizzes them on which movie Rachel claims is her favorite (Dangerous Liaisons) versus what actually is (Weekend at Bernie's). I am here to admit to you that I, too, am guilty of "Favorite Movie Fraud". Don't get me wrong...My cult love for Boondock Saints and Wedding Crashers knows no bounds. But I have an inability (and admitted unwillingness) to let go of the 1951 Disney version of Alice in Wonderland as my number one favorite movie of all time. Hence my Halloween costume for the last, I don't know, five years.

So, in knowing and embracing this somewhat shameful addiction of mine, the lovely Sydney gave me the picture above as a Christmas gift this year. And I luh-huh-huv it. Not only do I obviously like it because of the story, but also because I have an affinity for turning vintage things into DIY projects for my house. So I've decided to make a matted frame and post the picture, along with a favorite poem of mine that I wrote about 4 years ago, on the wall of my new house in Fort Worth. I can't wait to have the time to start on it!

So anyway, upon digging said poem out of a bedroom drawer, I decided I want to share it with y'all. I can't really explain where it came from...I've always enjoyed writing, but poetry has never been my strong suit. This particular poem however has stuck with me for years. Maybe because by reading it, I can still feel everything it describes as if it happened yesterday. Maybe because it reminds me so much of my beloved childhood favorite. Who knows? Who cares? I'm proud of it and I want to hear what y'all think :) So. Here we go.

Slowly sinking...Failing to rise...

Truth set free in my blind eyes.

Unable to move...Barely thinking...

Into make-believe I find myself shrinking.

Still life took flight and time slowed to a halt,

All reality sealed in an eight-hour vault.

Five senses heightened, one before now untapped;

Behind transparent walls I find myself trapped.

I tasted the cracker and met the Mad Hatter

As I watched the Wonderland I knew being shattered.

While Beelzebub poured me a glass of red wine,

I met the Father and he kept me alive

And as unlikely angels guided my path,

My inner turmoil lashed out its wrath.

Then poison released, I am once again brave...

I love what I am and it's perfection I crave.

Colors are flavors, not shades as I'd learned

And as each second passes, another is earned.

Everything what it isn't and nothing as it seems...

Fairy tales and fantasies only brought to life in dreams.

To be better is worse and to have less, so much more...

All of this imagined in my dream I was awake for.

:: It's the End of the World As We Know It and I Feel Fine

By now, I'm sure everyone has heard the big prediction. Arithmetic may not be my strong suit, but I'm 99.9% certain that no matter how "holy" the math that David Koresh wannabe did was, the Rapture is not going to take place tomorrow.

I am a Christian. Not a fanatic. (There's a very fine line.) And it seems that every Christian out there with common sense is thinking the exact same thing: "In the Bible, doesn't it clearly state more than once that no one knows when the Father will return except for the Father Himself?" Preeecisely. You'd think that these extremists, in all of their Bible toting and quoting glory, would be privy to that information.

But as much as I want to roll my eyes and admonish them, I can't help but be more focused on what I find to be the truly tragic part of the equation. Don't get me wrong...Even as a Christian, I don't claim these fruitcakes. (Zing. Sorry.) But you know what? At least they believe in SOMEthing. The only reason this event has my attention whatsoever is because of the multitudes of non-believers that are coming out of the woodworks, the blatant disrespect to their fellow human beings for not sharing in their lack of beliefs and comments that are being posted on message boards across the world:

"When this doesn't pan out, can we finally stop taking the Bible and its wizard in the sky seriously altogether?"

It makes me sad...Heartbreakingly sad...That something as sacred as believing in God is taking the fall for something that man created.

To be a Christian is not to say that I think I am perfect. Far from it. I take the Lord's name in vain in Dallas rush-hour traffic, I party more than I should, I have moments of doubt and I enjoy some extremely shallow and materialistic things. But I also believe with all of my heart, mind and soul that Jesus died for my sins, saved my life and forgives me for being an idiot on a daily basis. It's an amazing comfort, assurance and elation that can not be described in words. Do I believe in the Rapture? Yes. Do I believe in Heaven and Hell? Absolutely. Do I believe that if I don't forward a Facebook post that I will go to said Hell? Not in the slightest.

So to anyone out there who runs across this blog and feels it necessary to chastise me for "believing a fairy story", I don't mind. It will never change my beliefs or the way that I live. Because the bottom line is that I would rather live as if there is a God and find out there isn't than live as if there isn't to find out there is.

:: Bye Bye Prednisone Belly!

It's official. It's been 4 months since my last hospital stay and I've finally had it up to HERE with this stupid pooch that I acquired. I thought over time that it would disappear, much like the 10 pounds of Prednisone water weight that I gained and lost fairly quickly, since I actually ate less and did more physical therapy while admitted than in my usual day-to-day routine. But try as I might, it refuses to let my pants fit comfortably and makes for a pretty grumpy Farrel while sitting at my work desk or attempting to squeeze into my favorite jeans.

Bon Appetit! :)

So, today being the first day of the month, partnered with my OCDness about things starting on a proper schedule, I got off my lazy butt and did something about it. I went to Kroger and stocked up on healthier meal and snack options (fresh veggies, Odwalla smoothies, avocados, Triscuits, yogurt, etc)...Stopped by the gym on my way home from work and did 30 minutes of brisk walking cardio while watching my Rangers spank Tampa Bay (Again. Woot!)...And received the green light to begin Isagenix, a full-body cleanse to get rid of pesky toxins and hopefully my caffeine and sugar addictions too. Snacks today consisted of granola bars and yogurt instead of crackers and Fruity Pebbles and dinner was whole grain pasta in a garlic and olive oil spaghetti sauce with fresh Bella mushrooms and grilled chicken cooked in. I was also advised to start drinking Muscle Milk after my workouts for the calories and sheer amount of protein that they contain and I've felt better today than I have in months. I've had more energy, been in a better mood, my mind has seemed sharper and more clear and even though I'm still fighting the annoyance of the tummy, I've felt lighter and less puffy. Next up, I hope to resume biking and introduce yoga and maybe Zumba into my routine for added fitness, increased lung function and most of all, to break up the monotony of exercising. I wish my cysters Afton and Jessica lived closer so I could give their yoga classes a try! But for now, I guess I'm just going to have to trust a local ;)

So long story short...Don't be stubborn, Prednisone Pooch. It may take a few weeks, but you won't win this one. It's better to arrive late to swimsuit season than to not show up at all.

:: Land of the Free and Home of the Brave

Most everyone has something that they are fiercely passionate about. Aside from raising as much awareness for Cystic Fibrosis as I am capable, I am also a hardcore, proud supporter of our American armed forces. No particular branch...Just lovin' me some soldiers :) I am blessed to know many members of the military, past and present, and I can think of no act more unselfish and brave than to sacrifice their freedom to protect ours.

So in honor of Memorial Day and our troops: Thank you. From the bottom of my heart.

And in honor of all of the fallen soldiers, the sacrifices they've made and the families and friends they've left behind:

  

All I ever wanted to do was fly...

 Leave this world and live in the sky. 

I left the C130 out of Fort Worth town;

 I go up some days and don't wanna come down.

I fly that plane called the Angel Flight; 

"Come on brother, you're with me tonight." 

Between Heaven and Earth you're never alone 

On the Angel Flight..."Come on brother, I'm taking you home."

 I love my family and I love this land,
But tonight this flight's for another man.
We do what we do because we heard the call.
Some gave a little, but he gave it all.

I fly that plane called the Angel Flight;
"Come on brother, you're with me tonight."
Between Heaven and Earth you're never alone
On the Angel Flight..."Come on brother, I'm taking you home."

Well the tarstrip's quiet and the stars are bright;
It feels kinda like church in here tonight.
It don't matter where we touch down...
On the Angel Flight it's sacred ground.

I fly that plane called the Angel Flight;
Got a hero riding with us tonight.
Between Heaven and Earth you're never alone
On the Angel Flight..."Come on brother, I'm taking you home."