:: Blind Faith

I am in the midst of learning one of my most arduous life lessons yet: That the hardest thing in the world for a control freak to do is to "Let go and let God."

It sounds fairly simple. What could make life easier than turning all of your problems, questions and worries over to someone else and letting them fix things? What could possibly be more liberating? But for a girl who seemed to set up permanent camp in "the weeds" as a server and who drove herself into the hospital on more than one occasion while working for Dr G, trust me when I say that it is not.

It is difficult, frustrating and disheartening to feel like every time you take two steps forward, you take twelve back; To make decisions and fear that they may be the biggest mistakes of your life; To walk with no knowledge of when or if you'll reach the destination you're aiming for; And to hang onto something that you believe with all of your heart, even when it seems hopeless. Not because you have tangible proof that your fight isn't in vain, but because of a quiet voice that encourages, "Walk this way. Even if you don't want to. Even if you don't understand why. Even if it hurts to the depth of your soul. It will be worth it." 

For there is no feeling more extraordinary when the pain seems unbearable and nothing makes sense and you're on the verge of giving up than stumbling upon unmistakable reassurance, no matter how small, that through all of the unknowns, you are exactly where you should be according to what God has planned for your life. That promise alone makes even the hardest days manageable.

Don't get me wrong...I am aware that we as human beings have free will and that we are all responsible for our own choices. Wherein lies the challenge is that it is very much a choice to pay attention to or to ignore the voice guiding you. It is very much a choice to walk a different route because it's easier. And it is very much a choice to venture off the beaten path with nothing except blind faith and trust to guide you.

And trust Him I will. Although it would be nice to see clearly every once in a while.

:: 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 :)