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.

2013 Walk Pictures



Walking, walking, walking



Deb after the Koman Walk



Best friend

 

Natalie and her friend Maggie















Donation cards in memory of Alex





Little sis










Walk Day 2013

Well, it's been a few days.
I have absolutely no idea what's going on with my body. The bad taste in my mouth has completely stopped and the chest pains are slowly fading away, but now I have completely knew (or, returning) symptoms to deal with. My vision is getting more and more blurry, along with extreme fatigue, headaches, dizziness, and an increase in my unbalanced tendencies. This is making it really hard to play soccer, dance, and focus in school. I haven't let up on my treatments, so I have no idea what's causing this. I just know that I have to make it to the end of the year. I have nationals for dance come July, but other than that I'm basically open. I just have to make it through school, and then I can worry further about my health.
The walk went really well! It was yesterday (well, technically two days ago. It's 12:21) and we raised at least $28,000. If we reach 30K, we could break our all-time record! And that's saying a lot, considering we've been fundraising for thirteen years. The weather was lovely, the food was lovely. A family friend named Mark set up a PA system for the music and microphone announcements, which worked wonderfully and gave the walk a really professional feel. I also got to see Deb! Deb was my nurse at the CF clinic ever since I was diagnosed until a few months ago when she left for another job. It was really hard when she left...I can't even tell you how amazing she is at her job. She's just a remarkable woman. We got a chance to chat about Alex and Ilene and transplant and me--possibly--changing clinics soon. It was extremely refreshing.
Of course, there are going to be those people who break promises. Those people who tell you they'll come but don't. Tell you they'll donate but don't. And I've gotta say, I struggle with accepting that. I always put myself in the other person's shoes and say, "If I said I would do something, I'd do it." Some "friends" from school told me they'd come to the walk, and were then overheard today talking about how they had much better things to do on a Sunday afternoon than just walk. I don't think they get it. We're walking for a CURE. A cure that could've saved my best friend. But instead, they choose to believe that I'll be okay. That everyone with CF will always be okay. I guess I'll just have to do my best to change their minds.
I've also been having some mental and emotional break-downs lately, but that's not something I want to dive into. I talked to my mom about going back to my counselor, and she thinks it's a good idea, so that'll be taking place hopefully once school gets out. I know it'll help.
I'll upload some pictures from walk day later, since I've got mountains and mountains of homework to do now...ciao.

May is a Tough Month

Things have just been hard, lately. Alex's passing is starting to hit me in waves, as opposed to one continuous shock. I suppose that's somewhat of a good thing, but it's making my moods extremely unpredictable. I'm up and down at any given moment, and to be honest, it's exhausting. And the most frustrating part of this is that, in this type of situation, Alex would be my rock. The one who I'd lean on for support and vent to until my spirit feels lighter. I just miss her so much. The pain will never go away.
In addition to the emotional emptiness of grieving, my physical health is growing unsteady. For the past week or so, I've been completely exhausted all the time, and for the past few days I've had headaches and fevers. I've also been dizzy, nauseated, and had lung pain on my left side. I mean, I can honestly taste the infection in my throat. I don't know why this is happening, considering that I've been working extra hard on my treatments. But I guess that's just how this disease works. I hope it's not an infection brewing...I only have three more weeks of school until summer, and I cannot afford to get even more behind. I already feel like I'm drowning in information that I don't understand.
Oh, and in addition to all this, my walk is in exactly one week. There is sooo much to be done...t-shirts, food, collecting donations, and just getting people to care. It's gonna be a tough month, that's for sure.

The Children of the Third Floor

Each morning, the white sun rises over Jasper Street.

                     It peeks over the maple trees,

                            it hides from cloud to cloud,

                                     and finally, chasing hope, it sears

                                           through the windows of the east wing.

The children of the third floor are awake.

 

Sitting up slowly in stiff cotton beds,

they order their cereal,

their muffins,

their milk.

 

Oxygen removed and IV poles unplugged,

shaky legs and cold hands make their way across the room.

 

A l o n e, they view the cars passing by.

A l o n e, they admire the robins.

A l o n e, they curl up on slick leather chairs

and sniff roses received ten days ago.

 

Noses pressed against thick, smooth glass,

they watch the world they are missing.

   Summer shines,

      spring blooms,

         autumn falls,

            winter frosts,

and they miss the world they are watching.

 

But Superman soars past Benjamin’s window,

and Gracie spots pixie dust scattered through stars,

and the airplane, to Cole, is a great, puffing dragon,

saying “Hello” from time to time.

 

--Hannah Buck

The Beginning

My name is Hannah.
I'm seventeen years old.
And I have cystic fibrosis.

I was born on August 2nd, 1995, right on my due date. I was healthy--perfect oxygen, perfect weight, perfect everything. There were no problems, so I went home.
As I got older, my parents starting to notice things that set me apart from other kids my age. I was hungry all the time. We're talking seven bowls of cereal before preschool, and still heading out the door starving. I also coughed and wheezed all the time. In the first 5 1/2 years of my life, I went into the ER seven times because I couldn't breathe. My pediatrician diagnosed me with severe asthma, and put me on every asthma medication in the book. But it wasn't helping--I was getting worse.
Finally, after years of pain and unanswered questions, I was diagnosed with cystic fibrosis a month before I turned six. If you're not sure what that is, here's a basic explanation. In the 1950's, children with CF weren't expected to live long enough to attend kindergarten, so the mere fact that I survived to be five is astounding. Now, every baby is tested at birth for cystic fibrosis so this exact situation doesn't happen.
I went in to the hospital to be treated with IV medications, and in the next few months, my parents became experts on how to treat my disease. And because of my seemingly mild symptoms, I was able to have a very normal childhood. It wasn't until the fifth grade that I was admitted once again. We were told that I had cultured for pseudomonas, a common "bug" in CF patients. After this admission, things began to change.
Throughout middle school, I repeatedly retracted pneumonia, causing me to go into the hospital 1-2 times a year. And that's how things have held up until today, the end of my junior year. In the sixth grade, my lungs were functioning at 95% (a normal person's function at 120%.) The lowest they've ever been was during this past summer--44%. And today, they're hovering at around 70%.

The main purpose of this blog is for me to help other people, whether they be other CFers looking for someone who can empathize, or educating someone who's never heard of the disease. I'm not sure if anyone is ever going to read this--and if not, that's okay, too. Writing is something I'm passionate about. Something I enjoy. So I think I'm just going to put my thoughts out into the world, available for others to borrow.

Sounds like a plan, Stan.