An Inartistic, Overdue Update

August 14th - I had my third outpatient surgery to remove the toothpaste-consistency phlegm from the sinuses behind and around my eyes and above my eyebrows. The surgery went extremely well, despite the initial bleeding and pain which lasted 24 hours.

September 4th - I went to the CF Clinic to see Dr. Simon. My lung function was lower than usual, but not alarmingly so; I went on oral antibiotics and was scheduled to return in a month. My prescription for Zoloft was also doubled from 25mg to 50 mg, and I have found that my anxiety has since increased in frequency but decreased in severity.

September 29th - After my sixth straight week on oral antibiotics (I was already on different ones before the September 4th appointment) with no sign of improvement, I went to the ER and was admitted to the hospital. I had lost 7 pounds and had loud crackling in my left lung, so I was probably pretty close to developing pneumonia again, which would have been disheartening, considering I just had severe pneumonia in June.

October 5th - I was discharged from the hospital on one IV antibiotic and two oral antibiotics. That night, I got an awful headache and took my temperature to find that I had a low-grade fever. For the rest of the work week, my cough, headache, fatigue, and joint pain worsened.

October 9th - Deciding that I couldn't take the pain anymore, I contacted Dr. Simon's office online, and they advised me to return to the hospital. I did so.

October 16th - I was discharged once again from the hospital, this time returning to my home in Saint Joseph instead of my apartment in Ann Arbor. I want to be with my family while I finish healing, and I plan on going back to AA on Tuesday. My course of IVs will end on Sunday (tomorrow) and I will deaccess my port then. I'm struggling with the pressures of school and the feeling that my body seems to be deteriorating faster than it used to, but I have a greater support system than I could reasonably ask for. Thank you to my parents, Vinny, and the close friends who have taken the time to check on me. I'm not sure what's coming next, but I'll do my best to take it in stride.

Since Coming to College . . .

. . . I've learned not to place my happiness on the shoulders of those around me.

It took hours of sleeplessness, tears, and phone calls to my mother, but I have finally realized that putting the entirety of my emotional health into someone else's hands ends up being detrimental to both parties. This habit is one which I developed halfway through high school.  The silver lining? The fact that I developed it at all was because there was a very special person in my life at the time who was willing to carry me through the peaks and troughs of 16, 17, 18, and 19. But, as Chinua Achebe wrote, "things fall apart." During that age of heavy maturing, I realized that my happiness was at the mercy of someone who wasn't me, and why would that ever be something to desire? Now, as long as I have myself, I'm okay - and I'm very thankful to the person who taught me that, however painful it was for both of us.

. . . "cystic fibrosis" is no longer abstract.

Since the fifth grade, I've been admitted to the hospital two times a year. That was my routine, and as much as recurring lung infection can "work" for a person, it worked for me. Now, after watching my health decline more significantly and more quickly during these past 11 months than it ever has before, I've come to understand why the median life expectancy of someone as mutated as me is 37-years-old. Never in my life have I been able to imagine myself as an old lady, but I've never been able to imagine myself dying young, either. When I pondered the demise of my existence, it was always fuzzy. At the hand of my freshman year of college, with its loneliness and excitement and independence and busyness, there is a port permanently in my chest. Health insurance companies are knocking on my parents' door every day to collect bills I never used to acquire. I can no longer run up a flight of stairs (though I'm working on it). My health is now at a very tricky stage, and I'm forced to face that if I let myself go, today, I'd plummet. If I ignored my pills and physical therapy, I'd plummet. If I stopped exercising, I'd plummet. If I chose to stop fighting for my life, right now, there is a very big chance that I could begin to die. This is something I'm thinking about for the first time, but now that I am, I'm choosing to win. Now I CAN imagine myself dying young, but that's the only place where that scene will play: in my imagination.

. . . sandwiches have replaced cereal as my official "lazy meal."

Milk expires quickly. I don't have time to keep buying milk.

. . . I've stopped waiting.

There's something magical about saying "When I grow up . . . " with stars in our eyes. It elicits the idea that the future is a place of more possibility, luck, and motivation. Operating with the future in mind, we - naturally, as humans - become complacent. There's always tomorrow. There's always tomorrow, tomorrow, tomorrow. But what if I don't want to grow up? What if my best friend revealed that my most sunshine-y quality is the fact that I am childlike? If I never grow up, where is my magical future where dreams are possible and motivation floods my blood? Well, I know I'm still (barely) a teenager, but I think it's here. I want to read and write and make videos and help people and spread awareness for cystic fibrosis, and I want to do those things seriously. Professionally. I'm never growing up, so I'm never going to receive a message from the universe that reads "Do it now." Why would I wait until graduation day to begin chasing my passions? To begin helping people? I wouldn't, so I'm not. And let me tell you, there are big, big things on the horizon.

I'm Back

My little feet are exhausted and I'll tell you why!
1. I've been running.
Your eyes are not deceiving you! I finished up my three-week round of IV antibiotics on Monday, and my home care nurse came that day to deaccess my port (this means she removed the needle, but the port itself will remain under my skin for the next time I get sick). Later that night, I went on my first run since the winter. I won't lie and say I went very fast, but I did go far - 40 minutes worth of jogging/walking! My lungs were hurting, as were my legs, but at one point during an inspirational song I honestly almost cried out of happiness. Kinda lame, I know, but I just felt so proud of myself. It's been scary to see my health decline over the past year, so choosing to fight for my life has renewed my sense of purpose in the world. I've gone on two runs since the first, and I think they're already starting to get easier.

2. Class is back in session.
I haven't stopped taking classes since I first moved to Ann Arbor in the fall. Although the spring term ended two weeks ago, I had to take two "Incompletes" and I am still making up assignments. But I think Zoloft (my anxiety drug) has started to work, because I haven't yet had any panic attacks about catching up; fingers crossed that it stays that way! Summer term started last week, and I'm really happy about my decision to drop one of the classes I was going to take. Just having my Introduction to Literature class on Tuesdays and Thursdays is giving me a lot of time to do extra treatments and rest, so hopefully my lungs will get back to where they need to be within the next few months.

3. I went back to work.
Tonight was my first shift back at the coffee shop since I got sick, and I was ridiculously nervous to close by myself. I was only on my second week of the job when I had to go to the hospital, so I was unsure about my ability to remember all of the drinks. It ended up going really smoothly, and I found a little surprise in the tip jar at the end of the night. :)

My lungs have been pretty junky, these post-IV days . . . I'm having trouble going to sleep and staying asleep because I'm coughing more than I usually do. Additionally, I'm waking up super early with tons of thick mucus and chest pains, which isn't the most fun. I had a clinic appointment yesterday which my mom was able to come up for, and my lung functions weren't what I wanted them to be: only 63%. That number was a bit disheartening to see after JUST having gotten out of the hospital, but it just goes to show how sick I was in the first place. I feel really dumb for waiting so long to get treatment, but it was an awful time for me to be sick and I was hoping to just get over it. Unfortunately I set myself back pretty far, so it'll take a while to regain that lung function. But that's just even more motivation for me to stick with my running! I love this life and I want more of it.

Dr. Simon said that I can start taking Orkambi! He estimated that it will take 6-8 weeks for insurance companies to figure out how much of it they're going to cover, which better be 100%, because the drug costs $250,000 a year. I can't wait for pharmacies to start stocking it so I can see if it does my lungs any good.

Here's my most recent vlog - my mom and I took the camera to the CF clinic. Subscribe, if you'd like!

Best Day EVER!

I've been in a funk - a very funky funk. But today, the first genetic therapy drug for my mutation of cystic fibrosis was approved, and I think I've broken free.

Never before have I experienced such nauseating, debilitating anxiety as I have these past two weeks. I cannot name the root of my nerves, and believe me, I wish I could. It feels impossible to fix yourself when you don't know why you're broken. But today, I felt as if I was slapped in the face by the mane of a unicorn made out of gummy bears. 

Guys . . . Orkambi is here.

We'll skip over the complicated scientific explanation of what Orkambi will do for roughly 8,500 Americans (those with the double delta F508 mutation who are over the age of 12) and get right to the good stuff. In clinical trials, patients taking Orkambi gained 3% lung function over time. This may not seem like a lot, but it is important to understand that cystic fibrosis is a progressive disease. This means that it only gets worse. Any improvement at all is, quite literally, a contradiction of the disease itself! And while some patients did not see any lung improvement, they saw a significantly slower decline. On top of that, patients in the trial had an easier time keeping weight on, which significantly aids to lung function as well.

Right now, people with CF are skydiving without parachutes - once the disease hits its breaking point (and this happens at a different age for everybody), our plummets are fast and unavoidable. Orkambi is our parachute. Orkambi can slow us down. Orkambi can save us.

Now, I won't pretend that Orkambi has worked/will work for everyone. Different people react . . . well, differently. But the results are there. The science is there. And where there is hope, there is life. Dum spiro spero. 

I just want to take this moment to thank everyone for their support. I want to thank you (yes, you!), the human who is reading this sentence. Together, we bought this drug. When the government refused to help us, we payed the scientists to do their jobs. We gritted our teeth and went door-to-door. We sold t-shirts, baked goods, and purple ribbons. We walked mile after mile, year after year, shouting to anyone who would listen that someday, CF would stand for "Cure Found." And no, this is not a cure. But it's the closest thing to a cure that any of us has ever seen, and that is something worth celebrating. 

My Anxiety: Part One

I frequently worry, and I have for a long time. The physical manifestation of these worries can be observed by those who choose to be observant. Just a few weeks ago, a bus driver in Chicago locked onto my eyes as I hesitantly disembarked - Don't be nervous, honey, she said to me. But how couldn't I be?

• I was travelling alone. I had a train to catch. I was running low on money.
• My stop had either come and gone or had yet to come at all, but I wasn't sure which.
• People were staring at my clothes. People were staring at my luggage. People were.

Of course I was nervous, and of course she could tell. When the world around me crumbles, idiosyncratic breadcrumbs fall behind my feet. Visually, it is quickened breath, teary eyes, bouncing knees, a clenched jaw, and hands that fly from fists to jazz hands and back again. Metaphorically, it is a plea for help.

Since puberty, panic has been Plan A. Though I strive to present myself as a rather self-sufficient young adult, the word "overwhelmed" is one I use often when on the phone with my mother. For years, my life has grown more and more into a puzzle that I cannot put together, and when I can't find a piece, I cry. I pull my hair, I hyperventilate, and I shout to whomever can hear me that I need them. 

I saw a counselor from the end of 9th grade to the beginning of 12th. My grandpa's battle with Alzheimer's had been growing more gory, as had mine with cystic fibrosis. Like any other heterosexual girl of my age, I was in love with a boy who didn't seem to notice me, and a very close friend of mine was diagnosed with severe anorexia. I was unhappy. That same close friend recommended her counselor to me, and I went, spending over $100 of my parents' paycheck every week to snottily sob on a beige loveseat.

Growing up with a life-threatening illness, I was (and am) a faithful believer in medicine. After more than two years, I was diagnosed with nothing, and since I wasn't any better and my meltdowns were only growing more frequent, I stopped going.

The triggers of my anxiety are patterned; I break when I feel lost, unloved, or judged. Unarguably, however, the most debilitating panic attacks stem from my feelings of failure. This is the anxiety that rips into my relationships. This is the anxiety that one social worker noticed. This is the anxiety that diagnosed me with Anxiety.

Tonight, I begin the healing process. Tonight, I swallow a little green pill before bed and lose myself in a packet entitled "Free/Low-Cost Counseling Services in Ann Arbor." But then again, I hate to be lost.

Sixty-Five Roses

            I didn’t know that was going to be the last day. I swear I didn’t know. If I had known, I would’ve baked oatmeal raisin cookies instead of buying chocolate chip. I would’ve worn the earrings she liked—the ones that looked like little turtles. I would’ve brought a game she actually enjoyed playing. But I didn’t know, and I didn’t bake or wear or bring, and that was the day Rose died.

***

            “Took you long enough!” she yelled. I rubbed my hands with sanitizer upon entering room 223, trying not smirk at the way her voice cracked when she was irritated. Florescent overhead lighting mimicked noon in the worst possible way.

            “Oh, be quiet. It’s eight in the morning, you brat.”  A shiver seized the hair on the back of my neck as I adjusted the thermostat. There was no point in asking if she wanted a blanket—she didn’t. My eyes brushed her bones, knowing that drum-tight, moon-colored skin was the normality of her condition. Her blue lips fused into a firm line as she adjusted her oxygen cannula, then her floppy sunhat, which she insisted on wearing year-round.

“What’d you bring me?” she asked.

"I'll tell you what I should've brought you—nothing.” Rose laughed in reaction, mucus bubbling in the back of her throat. “Hey, can you even see with that thing on?”

            "Obviously. Not that there’s much to see here, anyway," she said. And she was right. With rounded furniture in varying shades of gray and a third story view of sidewalk cracks and bus station smokers, blindness seemed like a tumor worth trading for. Out came the cookies and the deck of cards.

            "Seriously? We played Uno yesterday," Rose said, not at all trying to conceal her disappointment. I constantly eyed the growing dullness of her corn stalk hair and wondered whether she was actually swallowing the pills I placed next to her milk. But when it came to what she was feeling, there was no guesswork involved. Methodically, I took off my coat, tossed it onto the empty recliner, and sat at the foot of the bed.

            "Well, Uno is a classic. And the classics are classics for a reason,” I replied, shuffling.

            “That’s what my dad says about his music.” I paused for a moment to watch her. Her freckles hid in response to January snow, clashing with the perennial power of her eyes. Her port dressing was coming loose, barely visible above the neckline of her t-shirt.

            “When was the last time you talked to your dad, Rose?” Now it was her turn to pause.

            “Last night.”

            “And what did he say?”

            “Nothing. Just the usual stuff.” She was growing more and more annoyed, her gaze refusing to set from my fingers and the cards.

            “Is he coming to see you, soon?”

            “Deb, does it matter?” Her eyebrows blew together and furrowed. “He’s too busy with work. Besides, you’re way more fun. And you’re a nurse. If I was dying, you would know how to save me.” She pushed her bangs behind her ears and I could see tiny dewdrops shimmering on her forehead.

            “Why would you say something like that?” I asked.

            “Because it’s true.” A cough rattled from within her ribs, proof that disease had rooted itself in a place neither of us could reach.

            “Here—we’ll start with more cards this time. It’s harder, but it’s also more fun.” Rose’s nostrils flared as I passed her seven Uno cards and straightened the deck between us. She froze, staring at her purpling fingernails.

            “You won’t stop coming, will you, Deb?”
            “Well, considering how often you tease me, I should.” I dug a finger into her side and a single, scratchy laugh was uprooted from behind her teeth. “But, no. I’ll always come. Life would be far too boring without you.”

            “Ugh. Stop mushing out on me and play.” She picked up a chocolate chip cookie, bit into it, and grimaced. “You know,” she said, chewing, “these taste like shit.”

***

            I often look back on that day and consider the things I could’ve done to give myself more time with her. I ask myself if the meticulous lip-liner was worth it—if my sedan really needed to be washed. They called it “Rose’s Celebration of Life,” but that’s not at all what it was. Or at least that’s not what it turned out to be. I withdrew into my skin, safe and unchanged, and peeked: thirty people in a dim room they could barely afford, listening to a man preach about a god they didn’t believe in, weeping over the loss of a girl they never paid attention to.

We are the Cough Kids

Tonight, breathing is difficult, and this is a hurdle to which I am no stranger.
It's discouraging, truly, to feel that my more concentrated treatment efforts are met only with declining health. Having recently been focusing on medicinal compliance, hints of improvement have been on my mind. But now, even with my hard work, my chest feels tight.
The air in my throat cracks and bubbles.
My quickened breath is audible in any room.
I am tired.
Even as I finish that last sentence, my fingertips abandon the keyboard and travel to my lips. I am forced to physically catch my own disease, my body rejecting the mucus that invisibly drowns it.
I'll let you in on a little secret, though.
This doesn't completely suck.
No, no. Feeling crappy isn't always bad, especially for professional patients. You see, despite the fact that no one should be defined by singular objects, ailments, or significant others, to a certain extent, we are. We all are. We all have a thing.

-----------

You know that coworker who burps to herself every few minutes, problematically imagining that no one can smell it? How about that guy in lecture who lazily scrolls ESPN every Tuesday and Thursday? Well, they too are whole. Just like us, they have families and fears and favorites. Though we know them by stoic, unchanging names, they too are utterly whole.
To us, they are to "Belch Girl" and "Rugby Boy." To others, I am "Cough Kid."
For those of us blessed with seventh chromosomal mutations, this alias - while occasionally suffocating - is familiar. Pleasantly familiar. We've been the Cough Kids of the world since we first cleared our collective throat (most likely at 3-seconds-old). It's not the most glamorous nickname, but it fits. Cystic fibrosis is our ancient, fading, spit-soaked baby blanket.
So yeah, we hate getting sick. We chastise our decaying bodies for what they cannot do, but beneath salty skin and clubbing fingers, we rejoice: we are still alive. Our bones, while prone to premature osteoporosis, are still made of stars. Though we may not often admit it (because, hello, it sounds crazy), sickness remains an old friend. By nature, souls crave companions.
I am a CFer.
We are CFers.
And yes, we also dance, drum, write, snack, adventure, sing, and pursue the perfect winged eyeliner. These are pieces of our humanity, and calling attention to our disease does not discount our pieces. Accepting cystic fibrosis does not discount our pieces. Wearing proverbial stickers that read "Hello, my name is Cough Kid" does not discount our wholeness, and anyone who says otherwise is threatened by the raw confidence we have harvested since diagnosis.
I am sick.
We are sick.
And these aching, brittle, star-filled ribs define us in an incredible way.

Love,
Cough Kid #70,001

Solemn Gratitude

Right now, I find myself struggling with the concept that life offers no paved path. While those who know what they love receive little guidance on which forks to take, those who are anchored to nothing have an even harder time of knowing where to go. As I've said and thought so many times in the past few weeks, the future is unwritten. And while I have superficially accepted this fact, I am admittedly lost.

Somehow, living in a wide open world is sometimes more terrifying than living in one with no choices. It's very tempting to feel alone--the people who previously surrounded me like winter children on a recess playground have now dispersed in every imaginable direction. At the blast of adulthood's gun, we are sprinting.

My life one year ago was unimaginably different than the life I am living now, and that is a wonderful thing. (It means I am growing.) When I take time out of my day to consider this disparity, I feel lucky: genuine friendships and newfound independence have flooded my life. However, I've realized how horribly easy it is to remain unsatisfied. To think I have no friends and I can't do this alone and I'm just going through the motions.

Perhaps this thought process is one of society's ultimate plagues. Perhaps if I, or you, or anyone could consistently remain in a state of thanks, each day would uphold its supreme value in our collective mind. Perhaps if we revisited being winter children on a recess playground, spring on a college campus would reemerge as wildly sweet.

A Change of Attitude

"Life stops for no one."

I feel like I read that quote at least once a month on Tumblr or Twitter or blahblah or hooha and it never fails to stop me in my tracks. Simply, it's just so true. I think of everything I've experienced in my nineteen years on this planet that has made me undeniably wish for a second--just a second to breathe--and I realize how strong I must be to have made it here. We are all so strong for making it here.

Wouldn't it be nice? Wouldn't it be nice if we had control like that? If we could say "World, I can't miss a week of college classes to go to the hospital right now--please pause college. Thanks!" If we could say "World, I need to grieve" or "World, I need to think" or "World, I need to rest." But, unfortunately, life stops for no one.

Here's to digging our heels in and living in real time.

S.O.O.

I was thinking of something today. Okay. So, I feel like everyone has a place, or a time, or an activity, or something-or-other where their soul finds peace. A something-or-other where it finally seems like everything is going to be okay. And then I thought to myself, "You know, Hannah, I bet consciously acknowledging those something-or-others is a really good way to find happiness." And you know what? I agree with myself. So, here I go.

My Something-Or-Others

1. Dancing: Okay, so this is typical. Any dancer would say this. But there's just some indescribable feeling that goes along to moving your body to a piece of music and knowing that other people are entertained by it. It's also cool to know that it used to be a huge medium for storytelling. Tap dancing really gives me that feeling more than any other style of dance, because I don't feel self-conscious when I tap. Honestly, when I dance, I completely forget about my real life. About all the problems and all the worries (unless it's a lyrical piece . . . in that case, I like to draw from my experiences to get true emotion on stage).
2. Writing: Writing gives me basically the opposite feeling as dancing does. Oftentimes, writing is a very painful and difficult process for me. Digging up everything that I pretend isn't there, the words that flow from my fingertips force me to deal with the crap I avoid. Poetry, in particular, really helps me deal with memories that are still raw. So, while writing is actually the time my soul feels the heaviest, it's also the time my soul feels the freest. Many people say that there is peace in ignorance, but I think that knowing is peaceful, because it forces you to find a solution. Or at least to stop pretending.
3. Sleeping: I'm not sure that this one needs an explanation, but the future usually seems to become less scary after a good nap.
4. Walking: I really like taking walks. And through making this list, I've realized that I don't take enough of them. Night walks are great, because the air just tastes so fresh and the stars just seem so bright, but I'm actually kinda scared of the dark. Maybe, if I could just wake earlier, I could take pretty morning walks. They're so soothing. (Running, on the other hand, is my bane.)
5. The minutes after a long cough attack: While hacking my lungs out with a reddened face isn't the most comfortable thing in the world, my lungs always feel sooooo good after I've spent a good ten minutes punishing them with giant coughs. Unlike in my usual state, this something-or-other allows me to take HUGE breaths without stabbing pain or a tickling throat.
6. The movie theater: If it wasn't so darn expensive, I would go more often! I like how all responsibility seems to fade away when you're watching a movie in the theater. It's like you're telling the world, "For the next 150 minutes, I am completely unreachable!" And, c'mon, with a giant bucket of warm, buttery popcorn on your lap, it's like the spa for your soul.
7. After finishing a huge assignment: Much like my cough attacks, this isn't enjoyable during the process. Only after. I love that "Ahhhh!" feeling. Maybe I should use that as motivation to further push myself.

These aren't all of my something-or-others, but I think it's a good start. Hopefully, now that I've recognized where my soul feels happy, I'll be able to enjoy these states more and spend more time smiling.

College Essay #13890429384

You found the secret message! Hi.

Our school play was so boring, I was about ready to claw my eyes out.

After ninety minutes of misread lines and overly dramatic underclassmen, the spring production of Bullshot Crummond was proving to be almost unbearable to sit through. It’s not that I didn’t love my friends whom I was there to support--of course I did! That being said, I didn’t argue when the lights came on for intermission. 

Pulling my phone from my pocket, I tapped the screen to check Facebook, as any teenager would. I scrolled past statuses expressing anxiety for tomorrow’s chemistry test (which I probably should’ve been studying for) and gushing about newly found soulmates. Nothing new, nothing new. Scroll. Scroll.
“They say you are never given something you can’t handle . . . but losing your best frien--”

Wait . . .

I’ve never been more frustrated with shoddy wi-fi than I was at that moment. 

Sprinting from my seat in the loud auditorium to the double doors of the main entrance, I waited outside for the rest of the post to load. My heart felt as if it was melting onto my ribs. Tears fell to my screen, but I didn’t wipe them off. Maybe they would cover up what I didn’t want to face--erase it. After what was quite definitely the longest three minutes of my life, I was able to read through the post in its entirety. My knees gave out. My phone fell to the concrete.

Alex was dead.

I met Alexandria at Bronson Methodist Children’s Hospital on a rainy day in 2011. I had been admitted to the pediatric floor a week into her “tune-up,” and since we were both cystic fibrosis patients with tired lungs, we ended up resting them in adjacent rooms. 

Because we’re only contagious to each other, two people with CF shouldn’t ever be in the same room. In the hospital, they take that rule very seriously, and growing up as one of only two people in my county with the disease, I had no one to confide in. I constantly felt isolated by an invisible illness, and no one seemed to understand--but all of that changed the day my nurse’s gloved fingers slipped a green index card into my palm.

Ten digits followed by a bubbly “Text me!” unlocked the most substantial friendship I’d ever come to know. We clicked instantly. Despite the fact that Alex’s cystic fibrosis was significantly more advanced than my own, we were able to offer each other identical support. We shared an oddly high number of interests (US Women’s gymnastics, writing, Coldplay, etc.), only enhancing our obvious medical connection. Soon, we weren’t just “cysters”--we were sisters.

Alex was the kind of girl who would go above and beyond expectations. She made YouTube videos about her struggle to breathe, each reminding you to live your life for every moment--to savor every breath. The pageviews on her blog exploded exponentially, and they still climb every day, topping 18,000 total. Even after her passing, Alex continues to inspire others.

If Alex had been born with healthy lungs, she still would’ve found a way to leave her mark, believing that it isn’t a person’s situation that defines them, but rather what they do in spite of it. My life is a bit emptier without my best friend, but it’s ten times fuller than it ever was before her. I will always miss her phone calls, birthday packages, and mixed CD’s, but much like her loopy surgery videos, Alex’s words will live on: “I have cystic fibrosis, but it doesn’t--and never will--have me.”

What is College?

I haven't blogged in a while...

I'm gonna work on that.

Promise. :)

So, where to start. Since my last post, all of my attention has basically been on college applications. I won't post my number one (mainly because I don't want to jinx anything) but it's elite and super hard to get into and expensive and blahhh. But, I'm in love with it: I've visited twice, and I know with everything I have that it's the place where I would be happy. It's just stressful, because even though I take all honors and AP classes at school, my GPA really isn't that high. Missing a lot of school really takes its toll on your grades. I'm hoping that admissions counselors will be able to look past my marks and realize that I'm at least a little bright--I have an okay ACT score and I'm really proud of my essays, so we'll see what happens. I only have one more school to apply to (by Friday) and then I will have applied to four schools. Those results will be ready before Christmas, and if I don't get into any of my top four, I'll send out another batch of applications to slightly easier schools by January 1st.

Other than applications, I've been doing a lot of writing, a lot of homework, and a lot of coughing. Band is STILL GOING ON because our football team has been kicking butt, which I like as a senior but dislike as someone who's basically allergic to fall. Spending so much time in the cold and the rain has got me pretty sick, at the moment. I'm not sure if I'll schedule an appointment at the clinic tomorrow or not--the marking period just ended at school and I missed all of last week, so I really really need to get back in the classroom. Too many decisions. I wish someone would just make them for me.

All of this craziness with college and CF has just made me get really stressed, and I'm just not feeling happy. And after weighing my priorities, I've decided that after my health, my happiness should come first. Writing makes me happy. Or, at least, a little calmer. That's why I'm rededicating myself to this blog, my poems and stories, and I'm going to try to start journaling. (We'll see how that goes!) Other than that, I'm just going to pray pray PRAY that the admissions counselors at my dream school are impressed by my application. I wish they could meet me . . . it's hard to imagine that my entire being could be correctly and seamlessly transposed on a piece of paper.

Back-To-School...Senior Year?

Today was my second day as a Saint Joseph High School senior.
I can't believe I'm this old.
What the heck.

I got out of the hospital (as expected) on Monday. Since it was Labor Day, none of the outpatient testing staff was here, so I did bedside pfts. A little less accurate, but helpful nevertheless. I was so happy to find out that my numbers had improved to 75%! After such a successful test, my doctor had no reservations in sending me home. Monday night, however, was a different story.

Basically, I had an anxiety attack. The first day back to school always gets me. Not the first day after summer vacation, but things like coming back from winter break or after getting out of the hospital. I think it's like that for a lot of CFers. We've just spent days and days (if not weeks and weeks) in a clean, quiet, calm environment. It's relaxing. It's safe. People are paid around the clock to take care of you and help you feel comfortable. Coming home from that atmosphere, where you're almost always alone and at ease, to a busy home where you're no longer the center of attention is, quite frankly, stressful. And I don't mean for this to sound self-centered...and if it does, that's not what I intend. It's just a big change. Polar opposites. And boy can I say that I freaked out.

I feel so bad for my boyfriend and my parents. I was going stark-raving mad. Crying and crying about how I wasn't ready to go to school. About how I hadn't completed my homework assignments (which was completely my fault, and really didn't have much to do with the hospital admission) and I had no friends in any of my classes and I had had the most horrible summer of my life. And, looking back, I know how petty and selfish I was being. I had a good summer. There were good moments. But losing your two best friends within two months of each other...it takes its toll on you. My brain is a scary place, right now.

Physically, I feel good. My lungs feel GREAT. My muscles, however, don't. I was too exhausted to use them in the three weeks leading up to my hospital stay, and naturally, I rested for seven straight days when I was there. I'm hoping to get in the gym once I get my PICC line out and get some of my strength back, especially with dance coming up again. It started this week, actually...

That's it, basically. I'm feeling stressed about school and college apps, guilty for my seemingly bi-polar moods and the way I'm taking it out on my loved ones, and just plain tired. But I'm also trying to keep that positivity going. I was only in the hospital for one week. I made it out in time for my last first day. My mom and dad have been so amazingly kind and understanding.

I've just gotta keep dealing with this grief, and try to be happy, again.

Sheets

The sun went down,
but I'm still here.
   There's still a tube inside me.
      My dinner tray is in the sink.
         The whiteboard says my name.
The thermostat reads "55"--
that's something
I can choose.
But
my best friend died
right down the hall
wrapped up in sheets
like mine.
I want to leave,
but I cannot.
The moon
can't take my place.

Summer Admission

Well, guess where I am.

Yup, Bronson Methodist Hospital. I got here Monday after my clinic appointment. My numbers had gone up to 57%, which isn't THAT much lower than my baseline, but Dr. Marks said that after a week of such potent antibiotics, they should've been higher. I also lost two additional pounds after focusing all week on eating a lot of high calorie foods. My dad had dropped me off at the clinic and went to take care of something for a friend, and he said he would definitely make it back in time. He didn't, actually. I had to stall like 20 minutes, and he wasn't happy to find out I was being admitted...but one I explained to him that my choices are either to do it now before school or just get admitted in a month and stay here for double the time, he seemed to relax into a more positive mindset.

So my dad drove me to the hospital, walked me up to my room, and then had to head back for work. Luckily I'm 18 now, and can sign my own papers and check myself in. I got a chest x-ray because Dr. Marks suspected pneumonia, but the results turned out to be pretty much the same as my last chest x-ray. Which was very good news to hear(: I then got an IV, and that hurt, like it always does. I don't have a phobia of needles or anything...that'd be silly, at this point in my life. But I have bad veins in my hands and wrists that like to roll and hide from nurses, and of course, no one ever believes me. It took a while, but after exclaiming "I hate your veins!" she finally got it.

Yesterday I got my PICC line, and I was so happy to get that IV out. PICC lines are so much more comfortable. I recorded a few different video clips of the process, and I'm hoping to put them together into a video for my YouTube channel.

My blood sugar was also a bit off, so I had to get a glucose tolerance test today. I started my fast at midnight last night, and had to chug that disgusting drink at eight this morning. My blood was drawn at 10:20, so we'll find out tonight the results...this has happened two or three times before, so I'm not too nervous. But I guess it's still a bit scary, knowing that this test is for Cystic Fibrosis Related Diabetes, or CFRD, and 20% of people contract it because their pancreas is blocked by the mucus.

Also, my friends Anna and Brandi visited me bright and early today, right while I was chugging the drink! Haha. Yesterday was Anna's 18th birthday, and I was supposed to go to her birthday/going away party. :( She stopped by on the way to UofM, and Brandi's helping her move in her things right now...it's so sad. They've been my best friends at dance for as long as I can remember.

Whew! I know this has been long. A lot more happens at the hospital than it does at home, that's for sure. Dr. Marks asked me today if I thought it was time to get a port...that kind of took me by surprise. Lots to think about. He says I'll be staying here for at least a few more days, so I have no idea if that means two or ten. We'll just have to see.

No Inspirational Words, Tonight

So much happens in such a short amount of time, that I don't even know how to keep up with it.

Things have just been so...strange. My relationships with people have been changing nonstop. People who I've been really close to seem to be fading away, and I'm beginning to rely on those who I haven't, before. It's really scary, to be honest. Maybe I 'm just grieving...but I'm terrified that I'm going to end up alone. It's the "please don't leave me" mentality. I've gone back to counseling with Allison. She's amazingly kind and as understanding as she could be without really understanding everything about cystic fibrosis.

Anyway, I'm sick again. I went to clinic today, and had a really disappointing appointment. I've lost 9 pounds since my last check-up a month ago, which really doesn't make sense, considering the food I've been eating and the exercise I haven't been getting. I mean, I'm trying, but my lungs really can't handle it right now. I've been coughing more and coughing up a lot more, and I've been wheezy and short of breath. I really didn't think it was that bad until I saw what my numbers were...42.8%. Like, what? One month ago, they were 79%. And I know this is just a bump. I know things will get better. But right now, I'm really sad, I miss my friends, and I feel like crap. No inspirational words here, tonight.

Midsummer Update

It's been a while. A lot has happened in the (almost) first two months of summer.
Nationals...were the best our dance academy has ever had. We honestly just kicked BUTT. First places all over the place. My tap solo was against 16 other girls, and I got second. It was amazing. :) Standing up at awards to receive that trophy was the happiest I've felt in a long, long time. Probably since before Alex passed away, which was three months ago, yesterday. It was my last nationals I've ever had, and my goal was just to get a ribbon--8th place or above. I've gotten 9th at nationals like three times, haha. Basically, I had an amazing, amazing time.
After nationals, I fell pretty sick. Everyone in my troupe had a cold or an infection or the flu virus at somepoint--that part was sucky. People were throwing up and I was just terrified that I would catch a horrible infection in my lungs. And the day after I got home, I was sneezing all over and over, which a sign for me that something is really wrong. I never sneeze. I made it to my quarterly visit, which was two days ago on monday, and my lung functions turned out to be 79%! Almost 80...awesome awesome awesome! I usually stay around 65%, so I was really happy, but still wondering why I've been feeling crappy. Dr. Marks said (Dr. Homnick left...I'm so sad) that it's probably a sinus infection that was starting to travel to my lungs. He sent me on my way, and I've been feeling better since I've started bactrumm, which was like a week ago. I even went on a run today(:
Oh...and after I got home from clinic, Justin and I had a Harry Potter marathon. 8 movies, 21 hours, one day straight. It was actually a lot harder than it seems, haha. We both kept falling asleep, but I'm glad that I can make Harry Potter jokes around him without him being confused, now(:
That's about it. I have a lot coming onto my plate, now...college apps, band camp, choreographing dances for troupe next year, reading all my AP Literature Summer reading books. So, yeah. Looks my lazy days on the beach are going to be more scarce from here on out.

Bittersweet

Today's the first day of summer. It feels strange to think of all that has happened in the last year...my first date with my boyfriend was a year ago today. I was looking forward to kicking butt as a junior. Alex and Ilene were both sick and in the hospital. As it turns out, only one out of those three things lasted. Justin and I are still together--he's my best friend--but my grades turned to crap and my cysters are gone.

Just like at Alex's celebration, Justin and I sang Winter Song at Ilene's funeral on Monday. It was a really short service and her family kept thanking me for singing. It's just so strange. I feel so happy sometimes and so sad others--it's like I'm not in control of my own emotions. And it's taking a toll on my friends and family. Well, not really friends...basically, it's just Justin and my parents. I've pushed everyone away in the last two months.

I'm trying to throw everything I have into dance. Dance is my one uninhibited place--I used to think writing was like that, too, but I'm coming to realize that I'm not as good at writing as I thought. I mean, I don't try on here...I just type and don't look back. But when I actually put my entire being into a piece, like a narrative or a poem, it just doesn't come out like I hope. I wanted to be the best, but I'm not.

Anyway, dance. I leave for nationals in less than a week...that seems so close. This is my last year on the competition team. Next year I'll do a solo and choreograph a couple pieces, but that's it. Bittersweet.

It Happened.

I got a text on tuesday that said, "Hey its ilenes sister I was told to ask if you want to come see Ilene and say goodbye?" Because of how well she was doing on her birthday, I thought saying "goodbye" meant she was healthy enough to be moved to UofM. I was wrong. I rushed to Bronson and went into her room by myself. It was completely full of people. Everybody was cying. Her sister, Sarah, let me take her spot for a few minutes to hold Ilene's hand and talk to her. I told her that she was strong. I told her I loved her and she did her job here on earth. I told her to have fun with Alex and tell her I said "hello." Then I backed against the wall to leave room for other people. The pictures I gave her on her birthday were propped up on the table at the foot of her bed. She was all white and cold; there were no tubes connected to her. It's because her dad signed a DNR on monday. She took a quick, shaky, shallow breath every five seconds and I could hear the mucus when she did. It was completely silent except for people sniffing their noses. I got there just in time: after 10 minutes of being in the room, she stopped breathing. I watched Ilene die. I'm the only Musketeer left.

I'm Scared

I...am bad at blogging. It's been like 20 days. haha.

School is over, kind of. I have a few outstanding assignments left, but I've been working hard to finish up during this past first week of summer. Hopefully everything will be done by tomorrow, when I go in to take a few chemistry tests. Oh my goodness, exams were terrible. Absolutely awful. It's hard to know that I'm capable of so much more. That CF is holding me back in that sense, because of missing so much school. I've been trying not to get down on myself about that, reminding myself that it's not my fault, but I just feel so stupid. "When you try your best, but you don't succeed," as my favorite band would say. Gosh, I love Coldplay. Listening to their music really helps me feel better.

There have also been a few setbacks, recently. The biggest one is Ilene. A few days ago she went into the hospital, only to be directly admitted to the ICU. Her oxygen was so low that she had to go on bipap. She has so much pain and such high fevers, and the scariest thing is that this exactly what happened with Alex. She went into the hospital, was put on bipap, and she never came out. I'm so freaking scared. Luckily, Ilene has been able to take the bipap on and off from time to time and use a regular oxygen mask instead. My mom, Justin and I were even able to visit her yesterday for her 16th birthday. You heard me...she's at the lowest health point in her life on her 16th birthday. Her room doesn't have a shower...her bathroom is just a toilet in the corner with a curtain for a door. If her oxygen gets too low, the monitor beeps and beeps until the nurse comes in to yell at her to put the oxygen mask back on (that happened like every 5 minutes.) I just hate seeing her in so much pain. She had one cough attack that sounded absolutely terrible--I almost started crying. But I'm glad we were able to see her and bring her some goodies and candy. Justin picked her flowers from the gardens around his house, and I gave her three framed pictures. Two are just the two of us, and then one is Ilene, Alex, and me. I love that picture. It was taken less than a month before Alex passed. It's so scary to look at that picture and realize that everything has changed. That things are just going to continue to change. I'm so scared of being the only one left from that picture. I'm scared of none of us being left.

Me and the birthday girl! She's such a fighter.

Alex, Ilene, Hannah. Cysters forever.