:: The Land of Oz

Clearly, I'm the world's worst at keeping my blog up to date. But I'm fairly certain that I found a way to come back with a bang in 2013 :D

This year, I become a living, breathing fossil. That's right, kids...Though I may only look 14, in ten days, I turn The Big 3-0. And in honor of this CF milestone, I was given the opportunity to visit Australia, aka my #1 Bucket List destination, in January with my cyster, Lyndsey. We covered three "states" and packed as much into two weeks as our little lungs and legs could handle, resulting in hours of stories, hundreds of photos and a video blog from this shameless nerd, which I'll let speak for itself A) Because it'll do the trip far more justice than my rambling ever could and B) Because it's time to soak my dentures.

BONUS: Little did I know while recording these video snippets that once pieced together, this vlog would have the ability to double as a drinking game. Should you choose to accept this mission, drink up every time I describe something as "absolutely gorgeous" or get all scrunchy-faced squinting against the brutal, yet fabulous, Aussie sun. You'll get toasty.

F Rex, over and out ♥

:: 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.

:: Inconceivable

Show of hands...How many of you just read that title Princess Bride style?

Blame it on my inherently emotional Pisces nature, but I'm with my future husband Mr Depp in believing that a life without love is meaningless and empty. Don't be mistaken...I am NOT solely referring to romantic relationships. Giving and receiving love between friends, family, romantic partners and fellow mankind in general is, in my opinion, what makes life worth living. Whether it be camaraderie with friends during a night out, randomly helping a stranger, reconnecting with family over the holidays, hearing "I love you" from that special someone or contributing to a Habitat for Humanity project, love in all shapes and forms is the only thing in this world that can cover up all pain and negativity and make life feel wonderful again.

So someone please explain to me why some are so averse to it. Terrified of it. Will do absolutely anything they can to run from it, including responding to those who attempt to show them love from the opposite end of the spectrum: Anger, cruelty, indifference and defiance. There are so many horrible things in this world that mankind tolerates every day and yet we fight God's greatest, purest blessing? It's inconceivable to me. But, "There by the grace of God go I". It is not my place to judge or to change...Only to love anyway.

Never use the words "I love you" loosely. If you speak them, practice them. And if someone says them to you, realize how blessed you are, refrain from shutting yourself off to it...And maybe even try letting down your defenses and reciprocating it. True happiness, in its simplest form, stems from love in one way or another. Be happy. Always.

:: "Bring Out Ya Dead!"..."I'm Not Dead Yet!"

Bit morbid? Probably. Moving along...

Happy Birthday to Me! :)

So the last few days until my 29th birthday are rapidly dwindling down. (Crack all the over-the-hill jokes you like, but keep in mind how little they affect us CFers ;) There are only two things that I want for my birthday - One of which has been discussed and will hopefully still be granted at the end of March after my PICC is out and my IVs are over - But the other is more unorthodox. I fully intend to carpe the hell out of my last diems in my twenties, but one day, that may not be possible for me without an organ transplant. The best gift that anyone can give me would be to officially list yourselves on the national organ donation registry. Yes, I'm serious. Currently more than 110,000 people across the United States are anxiously awaiting life-saving transplants...One donor can save up to eight lives and one day, one of those lives will be mine. I've been a donor on my driver's license for years, but I just recently registered at DonateLifeTexas.org and in honor of my decision and my birthday, my mama gifted me with the new license plates above that I personalized myself. Love them!!! :) Obviously in my case, my organs will most likely go to CF research instead of transplants, but will still be lifesaving in their own right. Once you've passed, your organs will be of as much use to you as your credit card, so why not make a second lease on this beautiful life possible for someone less fortunate? DonateLife.net. Do it. For me. And then let me know so I can smother you with thank yous :)

I'm also super excited and proud to announce that on 12.12.12, I'll be in sunny Florida standing beside the lovely miss Jessika as one of her bridesmaids! :D I won't lie...Between how happy I am for her, how honored I feel to have been asked and the anticipatory glee of finally getting to vacation to my one beachy dream destination that I've never been to, I got a little teary eyed...Before I started doing my happy dance. As an added bonus, by then she'll be all transplanted up and enjoying a new lease on life that will only be made that much more amazing once she and Leighton are husband and wife. And I get to be a part of all of that? Who says there are no such things as fairy tales?

My weekly follow-up with my Infectious Disease Specialist was Wednesday morning to draw blood, check antibiotic levels, change my PICC dressing and pick up this week's box of IV meds and supplies. I'm slowly becoming accustomed to my new Siamese twin. For the first few days I ran mid-grade fevers which, thankfully, have left and not returned, but have now been replaced with extreme fatigue, a fluctuating appetite, irritability (OK bitchiness...Let's call a spade a spade...), the inability to hear out of my right ear first thing in the morning and most recently, nightmares. Every. Single. Night :-p And the loaded question: "Are you feeling better?" Yes and no. My coughing is more productive when I wake up and after my treatments so my breathing is increasingly becoming easier, but the side effects have me so worn down that it's difficult to notice. Plus I'm going on two months of being out of Pulmozyme, so there's the added effort of getting well without that. But IVs are rough for everyone, so I have zero room to gripe, and I'm committed to doing whatever it takes to get better. It may not always be at the forefront of my mind, but the fact that I can still GET well trumps any complaints that I might have.

"For we walk by faith, not by sight." - 2 Corinthians 5:7. It never ceases to amaze me how certain verses can be as cathartic as hearing the right song lyrics. Thank you, Lord, for continuing to give me strength and patience in more ways than one ♥

:: All You Need is Love...And Sometimes Meds

First and foremost, the most important news of the evening: My darling li'l Jessika got engaged tonight!!!!! And it would be 156% impossible to be any happier for her :) I've watched my precious friend fight CF for going on a decade and she never stops smiling, but that smile has been even brighter in the two years that Leighton has been in her life. It's rare these days to see the unconditional determination and dedication he puts into showing her love and making her happy and it makes me smile to know that she will live the rest of her life adored, safe and well taken care of. New husband...New lungs...New life. It's gonna be a beautiful thing. I love you, kiddo ♥

As for my own Hearts and Hugs Day, it was spent in bed, but I have no complaints. I received a bouquet of gorgeous hot pink roses from my always sweet and thoughtful friend Mike in Florida and an adorable, wide-eyed stuffed puppy wearing a pink boa from my mom that Biscuit keeps sizing up and growling at. Both were complete surprises and put smiles on my face :) Honestly, I've never put a lot of stock into Valentine's Day. No reason really...I've just never been one of those girls that HAS to have plans for fear that I might appear unlovable. True love is all around me every moment of every day, from my cysters to my mama to my friends all over the world who let me know here and there that they're thinking of me. I could not feel more fulfilled or grateful.

My follow-up with the Infectious Disease Specialist was yesterday morning and I was fairly confident that I looked and sounded better than I did a month ago. Apparently not, because instead of leaving with another round of Doxycycline and Voriconazole for my Aspergillus, I left with an order for a PICC line and the excited and thrill-filled expectations {end sarcasm} of my first home IV experience. I know I have zero room to complain...Many of my fellow CFers do home IVs on a regular basis and truthfully, I WOULD rather do them in the comfort of my own home with my pup snuggled up beside me than be immobile in the hospital. What I am NOT looking forward to, however, is that I'll be on a 24-hour continuous infusion for the one-month duration of the treatment. That seems crazy excessive to me, but I ran it by my CF Specialist and he thinks the regimen sounds reasonable. So bright and early tomorrow morning, I go back to the clinic for basic training on how to be both patient AND nurse (Judy! Ruth! Christy! Save me!) and to pick up my first week's worth of medicine. I'm also thinking of starting a video blog with this new experience, so if I do, I'll tag my first installment on the end of this post tomorrow as an edit. Who knows? Could be fun.

Breathe it all in. Love it all out ♥

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Here we go, ladies and gents! Vlog numero uno...Intro to Home IVs. Let me know what you think! :)

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