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!

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.

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.

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.