I realize that at times, specifically when I’m hospitalized, I find myself longing for my ‘hospital’ life to end, and for my ‘real’ life to continue in its place.

Well…. If I’m going to be honest with myself and the internet world, I also have a hard time with acceptance, and change, and accepting change. So for my life to once again revolve around admissions is a struggle for me to adapt to, and I’m enduring an inner battle of wills - to accept my life for exactly what it is, and to be okay with exactly where I am, or to continue being frustrated with my circumstances, and caught in a tangle of anxiety and impatience.

I’d like to think that this is a good chance for me to really dig deep and identify my less attractive tendencies and work on them. But in reality, I wish life were simpler, and that improving as a human being was easier, less work, more ‘instant’ progress.

Ideally I’d wake up tomorrow and be patient; open to the idea of my health’s uncertain evolution. And I’d have perfect teeth and a nicer bum.. And I'd be sunbathing in New Zealand right now, or perhaps in the south of France...

But I’m realizing that this life is a learning life, and I’ve been handed an odd hand because some part of me is capable of not just accepting it, but thriving.

Accepting that my physical limitations may be more real some days than others, and that it’s not my fault that this disease progresses. THAT is a tough one. I tend to blame myself for my body’s inability to cure itself.

Accepting that my life is never on hold, it’s just a different life than the one I would perhaps choose for myself. That hospital life is “real” life, and the sooner I begin to accept that, the easier the experience of being a patient will be.

That acceptance doesn’t mean giving up. Surrendering to what life hands me is the hardest thing I’ve ever even thought about doing, because that would mean that I’d have to forfeit control, or what little control I’d like to think I have… and that’s terrifying. Letting go is much more difficult than holding on, although it’s also exactly what I should be doing.

Surrendering my trust to the universe. Trusting that my life is exactly as it should be, just as it is.

This, my friends, is a work in progress.

reminisce;

Somehow this little girl has grown up, and yet I wish I could go back to my childhood, and savor every moment of health, and love, and adventure.

...though being an adult isn't so bad.

gratitude;

Seventy-five milligrams of Benadryl a day.

I'm a goddamn zombie. I'm not even a zombie. I'm just sleepwalking my way through the next fourteen days. I'll do my best to be articulate, but if this ends with a run-on sentence, I'm just asleep at the keyboard.

I sat in the hallway of the interventional radiology department waiting to get a picc placed, and since I had time to think, I did, and I thought about what a strange life this is.

Not in a negative sense, or even in a positive sense, it's just an interesting life I'm leading. CF makes my life ... different and strange and difficult, and yet, good.

I've had quasi-rebellious periods, where I rejected everything CF related, and I've wanted to zap the genetic defects away with a magic wand from a fairy godmother, and while she's around, how about being a few inches taller? And maybe red hair? Red hair could be fun...

And I also realize that CF is an odd form of a blessing, and at times, it just is. It's nothing more and nothing less, it just is. I'm twenty-four, still in college, have a dog, have long fingers and long hair, can sing every song from the Sound of Music, and have cystic fibrosis. It just is.

I'm unsure what the outcome of this admission is. I'm hopeful, er, hopefully realistic. I spend hours working on improving my lung function, and yet showering can deplete me of my energy. I've had to reevaluate my physical limitations, and mentally accept that yes, I have limits. Acceptance is a process.

But can I say that I am overwhelmed with gratitude and relief for this team? They give nothing less than every ounce of support I've asked for, and oftentimes more. I'm blessed.

I'm under the weather, I worry about the future, I lead an odd life, and yet it's a beautiful life, and I'm grateful.

Simply put, I'm afraid.

Now I've been writing, and writing, and re-writing all about that fear, and how it feels, how it tastes, what it looks like, where in my mind it has taken residence, and what it is exactly that I'm afraid of.

But that's a whole lot of fear and not a lot of room for anything else.

And when I focus on my fears, I forget, sometimes, that I've had CF my entire life.

Twenty-four years of effort, and work, and hospital stays and surgeries and procedures, and complications, and I've gotten through every last bit of it.

I'm still breathing, albeit poorly, I'm still able to walk, I'm not on constant oxygen, and if I do end up on the operating table with a new set of lungs, then it will be a blessing unlike anything I've ever experienced. I'll be able to breathe.

And that's really nothing to be afraid of.

pros & cons;

A pro for a lung transplant: I could run a marathon.

A con: I'd have to actually train for said marathon.

acceptance;;

My head is a lead balloon.

That's the colistimethate sodium talking, drug one of five in my medicinal cocktail provided thoughtfully for me, patient #18561596etcetc, by the doctors at Tampa General Hospital.

It wasn't easier the second time around, like I had originally thought. I was under the impression that life altering news is easier to take after being dealt the blow once already. And, per usual, I was wrong. Wrong wrong wrong.

The transfer of care to Florida from Massachusetts has been a bureaucratic nightmare. I am covered head to toe in insurance bullshit. I've got stacks of contradictory paperwork, physicians who may or may not take my insurance, but have been assigned to me regardless, only to find out that those physicians can't or won't see me, but I can't sign up for a NEW physician for three months. But to see a specialist, I must have a new physician. Now. But really, yesterday would have been better.

It's enough to make a girl have to stop and catch her breath.

And that leads me to conundrum numero dos:

My lung function is at an all-time record low - 26%. My weight, too, is lower than ever at 99.7 lbs.

Weight loss coincides with a decrease in lung function, so, easy - gain weight, improve breathing.

To gain the weight, I need to remove my gallbladder.

To remove my gallbladder, I need to .... improve my lung function! Or face being stuck on a ventilator post surgery with lungs that can't recover from the trauma of being put under anesthesia!

It's a textbook catch-22, and I can't seem to figure out where to start. Neither can my doctors. So not only was I admitted, but they threw out the ugliest phrase I know.

Lung transplant.

I wasn't ready for it three years ago at twenty, and I wasn't ready for it yesterday, despite my belief that the second time around would be easier.

It was not.

But despite my propensity for melodramatic blog posts, I'm not convinced I'm there yet. It took a minute for my mind to adjust to the shock, and digest that mouthful yet again, but once the doctor left the room, and the tears slowed down, on turned a light bulb.

The best kind of light bulb: hope. Or maybe denial, I'm not sure...

I'm just not convinced my lungs can't recover, I'd like to believe I could survive the gallbladder surgery, and I'd really like to believe that once it's out, my weight will go up, my lung function will increase, and I'll be known as The Girl Who Avoided A Lung Transplant Twice.

Yet hope is at times contradictory with acceptance. Acceptance that my lungs are fragile, and it might be time to consider the next step in the disease process; out with the old, in with the new. But yet, acceptance is a fine line away from admitting defeat and slowly becoming okay with that. I want to accept what CF throws my way, but not give up in the process.

And then, today, another thought came to mind, one I have long forgotten. In yoga, there's the idea that the present moment is the only moment; that our minds focus on the past, or the future, on ideas, fears, past experiences, or future anxieties as a distraction to being present. So where does that put this? Do I take this hospital admission at face value? Focusing solely on improving my lung function day by day, and dealing with a transplant if and when it unfolds?

Ideally, yes. But a huge weakness of mine is being 'in the moment' and staying present. I fret, I worry, I over-analyze, I bring up past events and mull over them, I think about the future and project what will/won't happen.

Yet, I'd like to try to accept that right now, at this moment, I am not a transplant patient, I'm merely in the hospital undergoing a routine admission. I'll try to take it day by day, hour by hour if I have to, and not allow the fear of what may or may not happen cripple my mindset and overwhelm my ability to get well.

I would also like to remember that whatever does end up happening is okay. An increase in lung function, a decrease, a gallbladder removal, or a lung transplant. The goal for me isn't to live in fear of the progression of this disease, but to live with CF, presently.

....That said, I really would enjoy a full recovery and a successful surgery and an increase in appetite and weight, and for my pants to fit again, and most of all, most of all, to put the words 'lung' and 'transplant' on separate back burners, and keep them there for as long as possible.

Is it wishful thinking?
Fuck yeah.

Do I care?
Fuck no.

Sometimes I wonder if our 'golden' days were those hazy, summer days that melted into the evening, that ended in the early morning, outside our local neighborhood Starbucks.

I wonder if we knew then how great those nights were. Days that blended into each other, no realization that one day, not far from then, every single one of us would go our separate ways, and that group, that indelible group, the group that bonded over uno games and late night caffeine, would never reconnect in the same way after that summer ended.

I think, sometimes, that we had everything we wanted. Friends, love, small town coziness and big town dreams.

Before break-ups, and disappointments, before responsibility hit us across our faces, and before we were let down, and our hearts were broken.

And it faded away as quickly as it appeared, and now we're scattered, and the friendships have changed, the love has come and gone, and Starbucks, well, I still drink it fondly.

I think I know which direction I want to go.
And even as I write this, life throws a few other kinks into the mix, and my ideas fly out the window and settle somewhere in the breeze.

I may get to keep my lungs, but I'll lose my gallbladder. The sooner the better, as a ten pound weight loss is impeding on my ability to breathe.

I started class, and am becoming increasingly unsure if this is the right major. Science is just so ... unyielding. I'd like a little more creativity and flow in my life.

I love this heat, the muggy warm nights, the salty sea air, and yet ... I'm a fall baby. I crave those crisp, clean, cool September, October days that I grew up with. The apple orchards, winding New England roads, small town diners and Cape Cod cottages, orange, red, yellow trees. How do you take a Massachusetts girl and expect her to survive ninety degree heat all year round?

And what's that you say? No sweaters in Florida? It's too warm for boots? It doesn't ... snow???

Seriously. What was I thinking.

and we're home;

I spent the entire summer exploring this vast, incredible country I call home.

New Mexico. Arizona. California. Oregon. Washington. Montana. Wyoming. South Dakota. Colorado. Missouri. Tennessee. And Florida, always Florida.

It was exhausting, exhilarating, and a once in a lifetime adventure.

We drove the Pacific Highway, from Los Angeles to San Francisco, and then we found the redwoods. Which were just as big as I remembered. I stood at the top of the Grand Canyon and couldn't quite take in what I was seeing. We splashed our feet in the Pacific, and drank tea in Portland. We shopped in Seattle and drove through hilly San Francisco. We spent the night on an island in Washington, an island so quiet that a person could hear deer munching in the yard. Which they did quite often. Along with frolicking, and whatever else deer do. We experienced the big sky that is Montana, and fell in love with a little town called Whitefish. We drove the Going to the Sun Road, and walked through snow at the top of the Glacier National Park mountains. In July. We discovered cowboy country, and found a town with a population of four. Just four. We spent days without cell service, and decided to buy a ranch in Wyoming. Maybe. Someday. I got wheeled around Mount Rushmore when my lungs took the day off, and we ate frozen yogurt while admiring the good men carved into the mountain. We experienced the beauty that is the Rockies, and the height that is the Mile High city. We stood under the St. Louis arch and got to know Nashville.

We made it home, in one piece and with a car full of mementos.
And a lifetime worth of memories.