I never realized how extensive a process it is to get my life back in balance.
CF has slowly crept into every pocket of my mind and overwhelmed my world.
I woke up today and decided, with a firm affirmation, that that was not alright.

Then, with renewed spirit and morning hair, I turned on an old Feist song that had brightened my mood so many times in the past, and I ate a bowl of cereal.

Decidedly, lung diseases are best shown their place by consuming mass quantities (three bowls!!!) of Honey Bunches of Oats (with pecan bunches).

And with every mark I make in my road atlas, and every note I write to myself about what to pack for the trip, CF slowly fades into the background, a faint protest of 'Don't ignore me!' and 'Insecurity is your friend!' becoming mere squeaks of my mechanical pencil as I erase and rewrite the route of choice from Wyoming to Colorado.

This summer is a metamorphosis. I'm not a sick girl. I'm a girl on a mission to get my little blue car to the west coast and back.

No lung problems or bad attitudes allowed in this clubhouse.

a slow process;;

It's taken me awhile to get back on my feet. If I'm honest with myself, I'm still struggling, though just barely, comparatively.

For two weeks post hospital stay, I was in a daze. I would start to cry for no reason, I was constantly finding myself agitated or upset over something that normally wouldn't cause me to bat an eyelash, I was snippy and snarky and anxious.

But at the point that I was discharged, I'd had over two weeks of consistent, substantial hemoptysis [hi-mop-tuh-sis –noun: the expectoration of blood or bloody mucus] and two procedures. One, fairly routine bronchoscopy followed by a less routine pulmonary embolization, a fascinating procedure that allows interventional radiologists to enter the femoral artery in the groin and travel up and through the descending aorta into the bronchial artery to cauterize malformed, bleeding blood vessels in my lung. Technology never ceases to amaze..

That said, in the hours after the procedure, I felt, for the first time in years, that I couldn't do CF anymore. I hit an invisible, anesthesia induced wall, and as I was lying on my right side, coughing up blood YET AGAIN, a small part of me broke. I tried to control the sensation, but I couldn't see past the bed, the sweat covered pillow and blankets, the catheters, the chest pain, the blood that would. not. stop. How can I get through a lung transplant if I can't even get through this? What is the point, really? I'm never going to sit up again. I'll never stop coughing up blood. I might as well just lay here and cry.

And as a team of anesthesiologists and floor residents flooded my room, I just broke down and cried. My nurse started moving my belongings into the bathroom, and clearing out excess furniture from around my bed, and placed a new ventilator/bag at my bedside, while three doctors had me sign consent to intubate if necessary, and floor residents asked to see the cup of blood and my mom sat by my bed holding my hand as I thought to myself - I really can't do this anymore.

I was, in that moment in time, done.

It's hard to see past times like that. Once those tiny thoughts and insecurities and doubts flood your brain, they're hard to work through. Even after I was discharged, fifteen days later, I was afraid that any coughing would induce another bleed. I was afraid of sleeping, and if I rolled onto my right side I would just cry. Easy as that.

I've been home for a little over three weeks, and I'm starting to feel like myself again. I'm on the mend.. But it's a slow process, and I find myself projecting to what the next procedure may be like, down the line. Or how I'll get through the next admission, or, eventually, a lung transplant.

I also struggle with explaining this to my friends, loved ones, doctors, etc. It's easy for me to feel what I'm feeling, and understand what I'd like people to comprehend and how I'd like them to react, and offer support, but it's hard to express that. How do I say to someone, 'Sorry, you're not being as supportive as I'd like, please get your head out of your ass and help me,' without offending?

But that's a rant for another day.

The point is, the point I've been getting to, slowly, is that I'm recovering.
And that I could still use support.
CF can be so much larger than myself at times, and it takes a HELL of a lot of work to keep my life in balance..

Nearly there.
Day fourteen and I am almost a free woman.

Just in time for spring.

recovering;;

The road to recovery can feel like a long one.

After two major procedures in one day, one of which had a few complications, I'm starting to feel like myself again. Last night, however, ended with me in a fit of anesthesia induced tears, a culmination of anticipation and anxiety over a nerve-wracking procedure and my dear, fragile, blood ridden lungs.

I'm trying to process what happened without dwelling on it, for fear the fear will creep back into my mind, the fear that I'll never recover, and that my lungs won't stop bleeding, and that the rest of my life will be spent on operating tables, and in beds in a supine position, and that the quality of the remainder of my days had just dropped significantly.

So instead of focusing on that, I'm accentuating the positive.

I'm able to sit.
I'm no longer bleeding.
I'm able to stand, and walk, even if it is more of a hobble.
My lungs are taking full, deep breaths again, and I'm no longer in need of O2.
The incision site is clean, unaffected, and healing.
The sun is shining outside of my windows, I'm able to eat, sing, talk, and laugh.
Today is a much, much better day than yesterday.

For that, my lungs and I are grateful.
..as are my nurses, who had to deal with all my bitchin'.

lookin' good.
must be the shape of my head...

This waiting has me anxious.
I sat up in bed at least three times coughing up blood last night.
My body is tired, my mind is running, and my stomach is tied up in knots.

When I woke up at quarter to six to cough up (hopefully) the last bit of blood I had stored in my lung, I saw the most brilliant sunrise. The sky was a fire of reds and pinks and oranges.

Now it's gray, and drizzling, and I'm waiting to get taken downstairs for a procedure that has tied my stomach into knots for the last twenty-four hours.

Here's to hoping it will stop the bleeding.

"What a surprise to the caterpillar, when the call to be quiet, contemplative and still, results in the ability to fly."

oh, yeah;;

Since sometimes things are best expressed in a blunt, perhaps crude manner...
Tonight scared the shit out of me.

I had nearly forgotten that my lungs were diseased. I really dislike that word, disease(d), so instead, I'll refer to my lungs as being held hostage by a mutant defect living on chromosome seven.

So, yeah, I forget.

I forget the drab hospital furniture, the food trays that get placed on my bed thrice daily that I eat from while feeling sorry for myself for scarfing down prison style breakfast/lunch/dinner on my bed, by myself, with my TV for company and my IV drip on sloooow.

I forget the drug reactions, the chest pain, the nausea, the headaches, the insomnia, the goddamn, and I really mean THE GODDAMN, constant, erratic beeping of the IV pump at all. hours. of. the. night.

The overeager-to-please intern at six in the morning. The team that rounds bedside at eight. The chest physical therapy at nine. Etc, etc, etc, for fourteen days.

It blissfully floats away from my mind the second I feel that dopey high from my signature on the discharge papers.

Tonight, however, I coughed up about a pint of blood.

BOOM.

I remembered every goddamn (GODDAMN) detail.

mix tape extraordinaire;;

Dear _________,

I don't always have the right words. And sometimes I trip over my thoughts. But despite everything, and I do mean everything, you still make me smile. And isn't that what it's all about?

Finally Moving - Pretty Lights
Wagon Wheel - Old Crow Medicine Show
Bohemian Grove - State Radio
Stay The Same - Bonobo
My Guru - Kalyanji Anandji; Thicker Than Water Soundtrack
Ocean - John Butler Trio
Real Life - Tanlines
Je Pense A Toi - Amadou & Mariam
Home - Edward Sharpe & The Magnetic Zeros
Furr - Blitzen Trapper
Everything Is Free - Gillian Welch
Heart of Gold - Neil Young
This Time Tomorrow - The Kinks
All My Days - Alexi Murdoch
You Really Got A Hold On Me - She & Him
Dark End of the Street - The Flying Burrito Brothers
Above the Bones - Mishka
Say Hey (I Love You) - Michael Franti & Spearhead
One Track Mind - Johnny Thunders & The Heartbreakers

..happy listening, ears!

Recap.







Don't fuck with our french toast.