:: 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 ♥

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

[/edit] 

:: Cowgirl Up

This past Saturday was the final day of the Fort Worth Stock Show and Rodeo and I was privileged enough to attend with my very favorite family :) For those who are unaware of what this event is, it's a three-week extravaganza that includes livestock auctions, commercial exhibits, bull-riding and the largest indoor rodeo in the world. For the final auction that we attended, kids from all over Texas breed and raise steers to sell annually. Companies bid on the livestock by the pound and the kids receive every penny to either put toward cattle for the following year, their college tuition, or both. The Fort Worth Syndicate is a group of businessmen who push for the companies to purchase the cattle for more than they're worth...If a steer is worth around $2 per pound, the Syndicate urges companies to purchase for $5-$10 instead so that the kids make more toward whatever they're saving for. They make a LOT of money for the kids' futures - Saturday's Grand Champion steer sold for $250,000. All in all, it's a very charitable event and a really fun thing to experience firsthand.

Stock Showin' It Up with Mr McMichael

I know it sounds like a silly Texas stereotype, but between the company I was with and the Stock Show itself, I felt more at home than I have in a long time. Aside from the family oil business, my dad bred and raised Santa Gertrudis cattle and Quarter and Paint Horses when I was younger, so my childhood was split between our ranch in East Texas and the Fort Worth Stockyards. In my early 20s, I veered away from everything country for as long as I could, but the older I'm getting, the more I'm beginning to re-embrace my roots, from the soulful Texas country music to the cowboy hats and boots to even loving the scent of horse stables. Everyone has their happy place and it's very hard to put into words the feelings of joy and peace that I experience when I step back into that lifestyle, even if only for a moment.

As for the rest of my week, I've more or less spent it in bed. I'm going on day five of a nasty stomach virus that even the infamous CF appetite couldn't touch until last night, when I finally ventured back into solid food with a few pieces of smoked salmon sashimi (as unappealing as that may sound, seafood has always been easiest for me to digest) and today, half of a grilled chicken sandwich, half of a bowl of soup, a cup of fruit and some lemon Jell-O. All accompanied with nausea and sharp, shooting pains, but keeping it all down is progress in itself. I have my follow-up with McDonald, the Infectious Disease Specialist, on Monday to see home IVs for the Aspergillus on my lungs are necessary, but I don't see my CF Specialist, Davis, until the 22nd. Hopefully between the stomach bug, the increased shortness of breath and the 102.3 fever I fought off a couple of weeks ago, they'll activate their Wonder Twin powers and figure out a way to fix me up good.

Sleep, come easy to me tonight.

:: MTV's True Life - I Have Cystic Fibrosis

My precious cyster Katie put it best when she said, "If 'I Have a Psycho Pet' is an option for MTV's True Life, then I'm damn sure 'I Have Cystic Fibrosis' can be one". I couldn't agree more. Below is my submission to True Life's casting director in an attempt to launch the largest CF awareness project I've ever been a part of.

MTV's True Life - I Have Cystic Fibrosis

My name is Farrel, I'm 28 years old and I live in Texas. I spend my free time indulging in live music, photography, traveling and spending time with the people who make me happiest. I work part-time as a chiropractic assistant at a hospital and am slowly but surely working toward a degree in PR. But what you would never know by simply meeting me is that I was born with Cystic Fibrosis, a genetic terminal illness that affects the respiratory and digestive systems of approximately 30,000 people in the United States and 75,000 people worldwide. A faulty gene produces mucus the consistency of chewing gum that clogs the lungs and obstructs other vital organs resulting in dangerous lung infections, lack of oxygen and malnutrition. To date, the average life expectancy of a CF patient is only 37 years old; There is no cure.

I could go on and on about the scientific aspects of having CF, but I realize that's not what the public is interested in. So I'll instead approach it this way...I was once asked, "If you could tell the world one thing about Cystic Fibrosis, what would it be?" And it is this. That CF hurts. It hurts physically when it feels like sandpaper is scraping your lungs with every breath. It hurts mentally to plan for and get excited about a life you may never lead. It hurts to fall in love because CF can be an extraordinary burden on anyone who is not meant to deal with it, most times resulting in rejection and loneliness. It hurts to watch dozens of friends lose this fight that they never deserved or asked for. But most of all, it would hurt to not have been blessed with the opportunity to experience life through a CFer's eyes - No love is half-given, no day is not lived to its fullest and NOTHING is taken for granted.

I consider Cystic Fibrosis to be a blessing in my life, which may seem like a strange, albeit crazy, outlook on something so devastating. But in my short 28 years, I have viewed life with a passion that most do not realize until they are lying on their death bed, wishing they'd done more with their time on Earth. I have met some of the strongest, most inspirational, most incredibly amazing people I have ever had the privilege of knowing due to growing up with this disease. The connection and sense of family among CFers, often referred to amongst ourselves as "cysters" (females) and "fibros" (males), can not be rivaled and can not be explained in words. Our lives' "normalcy" revolves around things that most only imagine in horror - Constant pain, illness, exhaustion, multiple drug treatments with miserable side effects, frequent loss of friends, recurrent hospital stays for weeks at a time, organ transplantation - And yet we never give up. We never stop fighting. And most importantly, we never stop smiling.

I respectfully ask that you seriously consider "I Have Cystic Fibrosis" as a valid episode topic for your show. I think you would be pleasantly surprised at what a draw an episode of this emotional magnitude would have and how many lives would be touched by meeting those of us who have been truly fighting for our lives since the day we were born.

Thank you for your time,
Jessica Farrel Amis
Dallas, TX

Thank you, miss Katie Fisher, for including me in the participation of this brilliant idea of yours. Let's DO this! ♥

:: Dolla Dolla Bill, Y'all

I woke up this morning and it was February. (Astute, I know.) First and foremost, it's my birth month! That's right, people. I'm claiming all 29 days of it. Let the party rockin' begin ♥

But this also means that somewhere between Thanksgiving and today, I have severely dropped the ball on fundraising for the annual Cystic Fibrosis Great Strides Walk that I participate in. I'm especially excited to participate this year with yesterday's release of Kalydeco VX-770. It has cost the CF Foundation millions of dollars to make this dream a reality and it will likely cost millions more to research, manufacture and gain approval for the supplemental drug that will save my life. Just imagine...There are over 1,000 mutations of the genetic chromosome that causes Cystic Fibrosis and they have conquered one. We've come such a long way, but we have an even longer way to go.

My team's fundraising goal this year is $5,000 and I really can not stress how much every single dollar makes a difference. Below is a short list of ways you can help:

Anyone who wishes to donate outright is welcome to visit my Farrel's Fighters Great Strides Homepage and do so securely over their server. 100% of donations will be credited to my walk team, Farrel's Fighters, the day of the event.

I also manage an eBay store, Puff Puff Bid, where 100% of proceeds also benefit Farrel's Fighters. This is updated almost daily with items ranging from electronics to movies to make-up to clothing and then some. Literally something for everyone if you catch it on the right day ;)

And last but not least, I'll be hosting the Fifth Annual Farrel's Fighters Garage Sale, taking place in yours truly's front yard the second weekend in May, and anyone who feels they are not at a place where they can donate financially is more than welcome to empty their closets and storage rooms worth of unwanted items into my back shed for me to sell the day of the event. (All unsold items will be donated to the Salvation Army.)

Aside from all of that, I'll be planning as many fundraising events as possible from now through mid-May in hopes of helping my team reach and possibly exceed our $5,000 goal. This, of course, will be the main spot where I'll keep everyone updated, so be sure to check back often :)

That's all for now about the fundraising business. But one more very important thing before I go...If you haven't met my very best cyster Jessika, you need to. Now. I love this girl more than life itself and she is embarking on a journey that I can only imagine is exhilarating, joyous, hopeful and downright terrifying and is definitely one worth following. She is such a positive inspiration and a huge source of sanity for me and I am ecstatic that she's been given this opportunity. Love you, sees-ter. It pisses you off, so piss it off back ♥

The end. Happy Farrel's Birth Month, y'all! :D

:: 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.