Still...

Yes...I am still feeling sick. These fast few days I have had absolutely NO energy. My eyes are constantly burning and my body aches. I have those lucky days where I feel as if I may be getting better, and then BAM the next day I feel even worse than before. Who knows..maybe it's just wishful thinking? I only have 5 more days until graduation..thank god. I more than likely would have already made an appointment, but I really want to be free on graduation. No IV's, no antibiotics, no nothing. My appointment is the day after and I really don't want to go. It's pretty dissapointing seeing your lung functions drop, especially when you try so hard to do just the opposite of that. My weight is also not doing that great. Most of my energy is being put towards breathing so all of it is leaving elsewhere. My breaths are more wheezy, crackly, shallow. I was struggling to catch my breath while just sitting down. This hot, humid weather doesn't help much either, but luckily I have air conditioning.
Here's "some" pictures that been taken over the past couple weeks

Happy birthday mom.

Happy birthday to you.

Happy birthday to youuu.

Happy birthday dear mommm.

Happy birthday to youuuuu.

Yeup, today is the birthday of a very special person.

My mom.

My best friend.

My support system.

A very big reason as to why I am who I am today.

My mom went through a lot during her life as a child, pre-teen, and early teenager, but just like me, she would never take any of it back. All of the rough times have led up to where we are now. So, where is that exactly? We are in a more than perfect world. Yes, there are hard times, but our strength together will conquer all of it. Our positivity and open minds will get us through the worst of times.

We read eachother's thoughts, laugh until our stomachs hurt, and lift the other one up.

We piss eachother off, mumble words of anger, and ignore the other one for unnecassary periods of time. But, no matter how long that may be, we still forgive, forget, and live on.

One of the biggest things I admire about our relationship is our bond. We recieve words of trust, wisdom, and strength amongst eachother. When I feel incredibly alone and drowned in my thoughts, I go to my mom. When I need a laugh to brighten up my day, I go to my mom. When I need to be remembered a reason as to why I keep fighting, I go to my mom. Not everyone gets the opportunity to experience this with other people, let alone their parents, so I am so incredibly grateful for everything we have.

My mom has seen me at my worst. She knows how CF affects my life and unlike many other people, she never ran away. She has been with me through it all and I think that is a big reason as to why we are so close. I know it hurts her to see me suffer, but she never surrenders to weakness. I hardly ever see my mom cry, but when I do, it breaks my heart. When I became incredibly sick in December I relied on my mom for everything. I needed her to bring me pills, plug in my breathing machines by the couch so I didn't have to get up, run up and down the stairs for extra things, make me food that I was able to eat, I even needed help showering. I knew she didn't mind, but I still felt like such a burden. Before I got admitted while I was really sick (I was trying to hold off until after Christmas), I slept on the couch downstairs for about a week and a half. Everything was more accessible, and it was easier for my mom to help care for me. Well, one night I had fallen asleep on the couch while my mom was sitting by my feet. I had woken up multiple times through-out the night because of how difficult it was the breathe, the pain, and the constant coughing. Everytime I woke up my mom would still be there, by my feet. I honestly can't tell you how much it meant that she was there. So, I woke up once again and saw my mom, but this time she was crying. I became so upset seeing her break down like that. I tried as hard as I could to stay awake and say something to her, but I was so damn tired and breathless. I think about that moment a lot, and it pains me everytime.

I love my mom. I love her more than words could ever explain, more than feelings could ever express, and more than all of the times I have said, "I love you" times a billion.

She is my head.

She is my heart.

She is my soul. <3 <3

  

  

Long day

So, today was my last day of school. I wasn't excited to be done because of no more homework, hours of awaited freedom from sitting in a small room, or to start my summer filled with parties, boys, and long beach days. I was excited to start my summer and end the school year so I wouldn't have to be surrounded by germs and I can focus on my health more.
Today was awful to say the least. I started running a slight fever last night and it continued on through-out the day. My coughing was nonstop, I was beyond fatigued, my whole body was filled with constant shooting pains. My lung pain got so bad that I was squeezing my side to try and subside it. I started getting around and studied for my government exam. When I was getting ready to head to school my mom wanted to take a picture and I just broke down. This is my last day of my senior year. I wanted to enjoy it. I wanted it to be memorable and filled with laughter. I cried and I couldn't stop. I was JUST on IV anitbiotics less than a month ago.
Anyway, when I arrived at the school I asked if I could take my exam in the office because I had absolutley no energy to walk up the steps, and I didn't want to be hacking up a lung while everyone else was trying to take it. They told me that I could came back next week to take the exam if I wanted, but I decided to stick it through. Luckily, this was probably one of the easiest exams that I've ever taken.


Well...I ended up falling asleep while typing this. I had taken some cough syrup that my doctor prescribed me and it has codeine in it. I am usually spaced out and incredibly tired for awhile after I take it. It is one of the only cough syrups that actually help me stop coughing. I only take it on occassion though because it really messes with me. I feel like a zombie for almost 24 hours afterwards.

Soooo, back to where I left off.
Definitely one of the easiest exams I've ever taken. After I finished, I went to the classroom and handed it to the teacher. I then had to get a paper signed by one of the lunch stuff, the guidance counselor, the secretary, my teachers, and the prinicpal to make sure all my fees were paid, I didn't have any missing assignments, I was passing my classes, and to check if my locker was cleared out. Afterwards, I went back to the classroom and we played pictionary for about 30 minutes until class was over. Annddd then for the rest of the day, this is what I did...Took my friend home, went to the elementary to pick up my little brother and his friend, came home, stayed outside for a little bit with the daycare kids, did a treatment, Ethan (my little brother) and his friend brought me an elephant ear from Riverfest (downtown festival where they have fair food, small rides, a car show, games, canoe races, and booths..happens for one weekend out of the year) ate pizza for dinner, went to walmart with my mom, did another treatment, and then came upstairs and started writing this.
I didn't wake up until around 12ish. I would've slept in longer, but I needed to do a treatmemt and my mom made banana pancakes! I've been craving them for a week and so my mom made them for me. My lungs are more sore than yesterday. Every part of them ache and it's worse when I cough or take a deep breath. I'm more congested. Breathing is harder. I'm incredibly drained, but some of it is from the cough medicine. I don't have any plans today exactly. All I know is that I want a lemonade from riverfest!! Yummy :) There's a senior class party being held by one of the boys in my class that I really wanted to go to, but I don't think it would be the best idea. It sucks, but I need to do my best to stay healthy. On the plus side, my fever has gone down. It's only 98.8. My normal is usually around 98.1. Let's just hope that it doesn't increase!

Here's some pictures I took through-out the day and then when I was laying in bed last night.

Another lovely poem I have created

Painful breaths and weak lungs.
Sickness has employed. This is what I've become.
I'm exhausted, supressed, and torn down.
It's time to remove my unyielding crown.
Words won't do justice, there's no way to describe.
I could never express exactly how I feel inside.
Breathe in. Breathe out. Continue the rhythm.
To me, it's mucus, aches, and unfufillness that collision.
Death surrounds me. I am familiar with the gruesome words,
"Breathe easy" and "Rest in peace."  Another passing of a young one has occured.
I taste the bitter infection occupying my tongue.
There's an army that favors the invalidation of my lungs.
The tiny monsters dedicate to seize control and become engrossed.
I have offically become the unwilling host.
Scar tissue, battered organs, and irreversable mutilation.
I suppose this disease would appreciate a standing ovation.
He craves my attention, and has no understanding of the word forfeit.
My deterioration has become a way of his self rewarding.
They say, "Time will heal all wounds,"
but in this case, time means more impairment has consumed.
Yes, I am exceptionally grateful to be alive and aging more,
but I also desire a breath that strive won't account for.
My body lacks the proper needs for survival.
The results are nothing short of vile.
I have gone through hell and back, time and time again.
There have been moments of close surrender, but I will keep fighting until I win.
But, I guess in a way, you could say that I have already won.
Despite my adversities, hope, strength, and positivity are always brought upon.
This fight can feel grueling and beyond the bounds of possible,
but to survive through this much, and give in with defeat, would be highly implausable.
I'm here to live, inspire, love, and obtain victory.
I will leave behind me a legacy, that will never diminish with history.

Updated pictures

This is a picture from the CF assembly I mentioned before

The next few are from the CF walk.

                                                        Right before I went to run!

At my doctors appointment

 This is what it looks like after my deaccess my port.

Me shooting the bow and arrow and the apple I hit! 

My graduation cap!

 The next few are just some pictures I took recently

Updateeeee!!

Yes, I know..it has been a long time. I have wanted to write for days, but I feel like I am just so consumed in other things right now...mainly school. I've been catching up on my online class and I'm almost finished! All I have left is another section, quiz, and then my exam! Speaking of exams..my last day of school is Friday!! Ok, ok. I'm going to update on everything now, but I'm not going to go into very much detail on everything, just some things. It's 3 in the morning and I have school tomorrow, sooo lets do this!
May 5th; Cystic Fibrosis walk at Litchfield high school. It was...Emotional. Exciting. Exhausting. I have been counting down the days ever since I knew the exact date of it. Every day was another day closer. We arrived around 9:45ish. We, as in, me, my two brothers, two stepbrothers, sister, mom, stepdad, grandma, and cousin. Through-out the walk I was able to see many people...I was greeted by a lady, not sure of her name, who was doing an interview for our local paper. Another lady, Shelley Downey, came up to me and started talking about CF camps that she attended and helped run. It instantly caught my attention. For as long as I could remember, I would always, always think about what it would be like to attend a CF camp. To be surrounded by so many people who understand your life, pain, and everyday struggles..yeah...I would do it in a heartbeat. For those of you who may not know, CFers are not allowed to be within 3 feet of eachother due to passing of certain bugs, or infections, that the other one may not have. That's why I have not been able to attend a CF camp. One of my favorite workers from the hospital I go to, Mark, drove an hour and a half, along with his wife and dog. I saw so many of my friends. I saw all of these people, and there's still one that keeps beating in the back of my head. Traes mom. To refresh some memory, Trae was my first CF friend. We met while being hospitalized at the same time, and he passed away. Now, I had never met his mom before. I never once thought, "I need to prepare myself for this." I was excited. I wasn't expecting to cry. When I saw Tonja, Traes mom, walk on to the track I ran up and hugged her. During that hug, I felt so much power. I was at a loss of words. After we finished hugging she looked me straight in the eyes and kept saying, "you're so strong." I was telling her to please not cry, and then for the longest time, we just stood there staring at eachother. I honestly can't explain what was felt. I have no words or emotions to express everything that was running through my body. Eventually, she walked away and my best friend, Kayla, walked up to me and hugged me and I just let go. I started crying and I'm so glad that Kayla was there to hug me through it all.
Tonja had a shirt on that has a picture of Trae on it and it says, "Breathe easy," Ravens mom was also at the walk and she walked up to Tonja and said, "Did you lose on to CF too?" "It's hard...it's so hard." While all of this was happening, my mom was standing next to me and had to walk away because she couldn't handle it. Also, Traes mom gave me a fake purple rose so I'm able to keep it forever, and that I will.
After the CF walk my family and some of our friends came back to my house for homemade macaroni and pulled pork. The rest of the day was pretty relaxing.
May 6th; Not very much happened on this day, but I do have one very exciting thing to tell. Well, I RAN!! I woke up Sunday morning feeling incredibly exhausted from the walk, but later that night, I went to the schools track and I RANNNNN!! It was painful because my port was accessed..not even sure if I was supposed to be doing that, but who cares?! It was the first time I actually ran in I don't even know how long..years it seems like. By Tuesday night, I was able to run a full mile!
May 7th; Doctors appointment. Overall, it was fairly a good appointment. My weight dropped a pound, but I'm still in the "clear-zone." I was 109. My lung functions were 55%! They were 53% when I left the hospital, so that's amazing! They are never higher than what they were when leaving the hospital. I was told to finish my IV antibiotics and then come back in a month..if I can last that long. I got blood drawn to check vitamin levels, and I left. On my way home, I actually stopped by the hospital to say hi to two of my very close friends, who also have CF, Ilene and Hannah. They were both admitted, and since I was already up there, I figured, why the heck not? I walk into Ilene's room and instantly feel a flush of happiness, excitment, and just ease. We told the nurses that we were going to the cafeteria with Mark and we stopped by Hannah's room on the way there. Seriously...it's just such an amazing feeling. We told Hannah to come with us and after she got unhooked from her IV pole, we were on our way to the cafeteria and then BAM...."You guys know that you're not supposed to be around eachother." Those words hit like a ton of bricks. Okay, first off, this nurse is not one who is liked by very many people, and two, they say "as long you're three feet away from eachother, you're fine." We had masks on and we were definitely more than 3 feet away..we didn't even hug eachother!! There was two other nurses who were trying to convince the other nurse, but she was just being stingy. So, we stood there. The expressions on our face were all saying the same thing. Tears wanted to flood from my eyes. We were forced to be torn apart from eachother and my god..it's so freaking hard. These two people mean more than the world to me. I am constantly surrounded by people who have no idea as to what I'm going through. I'm viewed from a different perspective than what is actually true. I hear, "things will get better," "you just need to stay positive," and "how are you doing?" on a day-to-day basis from people who don't even know that I was just released from the hospital. I'm trapped in this small town full of cliche, judgemental, and narrow-minded people. With Hannah and Ilene, they know exactly what to say, what not to say, they know what I'm going through. To be standing there, wishing so much to just be able to talk to eachother face to face, and be torn apart, was indescribable.
May 8th; I deaccessed my port and I returned to school. Well, I'm not even sure if I should be allowed to say "school." I only attend one class at the very end of the day. I don't have to be at school until roughly 1:30. It was actually pretty decent. I wasn't being overwhelmed with millions of people coming up to me and asking questions or telling me the latest rumor as to why I was gone so long. I understand that people care and sometimes just want to ask how I'm doing, but then again, more than half of the people that ask how I'm doing don't bother to ask any other time. I feel as if some people just do it to feel better about themselves and have a sense of pride. I know it may sound horrible, but that's how I really feel. I have been trapped and confined in classrooms of many, many people who are so ignorant, selfish, and untrustworthy, that it's hard for me to see something other than that amongst teenagers.
May 12th; I learned to shoot a bow and arrow. I worked on a homemade target and then I tried shooting at an apple, and guess what? I DID IT! I was shooting with my brother and two of our guy friends, and out of all of them, I was the first, and only, one to hit it!
May 14th; I recieved my cap and gown!
May 15/16; There was a senior bonfire at one of our fellow classmates house. Me and one of my friends arrived around 9:45ish. It was the first time that I actually did something with a group of people in so, so long and let me just say that it was amazing. Everyone talked about memories from years back and it was nice to reflect on the easier times. It was also nice to be with a group of people and to not have to be talking about my CF. Don't get me wrong, I love talking about it, but sometimes it just gets rough. It's hard hearing myself repeat how I haven't been improving, feeling good, or the latest problem that has occured. So, it was also senior prank night. Earlier in the day, before the bonfire, some of my classmates went to the school and put two alarm clocks in the ceiling tiles of every classroom..they are all set to go off at different times through-out the day tomorrow! Also, mostly all of the people at the bonfire went to Wal*Mart to get supplies, and we went to the school. We TP'd and forked everything, we put window paint all over the windows and wrote stuff like, "seniors 2012" "we are officially done" "sucks to suck-underclassman" and we all wrote our names. We put instant mashed potatoes in the grass since it was supposed to rain later. Tomorrow morning some seniors are going to school really early and putting zip-ties on everyone's lockers, except the seniors obviously. I'd have to say that this night was probably one of the best that I've had in a very long time. I didn't get home until about almost 2 am, and surprisingly, I wasn't exhausted!

For a health update, I have been so-so. I ended up catching something by the third day I returned to school. Apparently there has been a bunch of illness going around..perfect! I'm not sure what exactly it is that I caught, but I'm still not completely over it. My chest is really congested, my body has been extremely sore, coughing more, fatigued..ya know, the usual. After a few days I felt as if I was starting to improve, but now I feel like it's starting to get worse again. Last night and the night before I was laying down before bed and I started wheezing and it was harder to breathe than usual. I've been getting short of breath. I'm just really hoping that it doesn't get worse. I have honors night coming up, GRADUATION, open houses. I have an appointment the day after graduation, and I better be able to last that long!
So yeah, all in all, this is basically what has happened since I last posted. I plan on posting pictures in another post fairly soon. I tried doing it earlier, but it wasn't working. I probably left out some things here and there, but give me a break..it's a lot of updating and I haven't slept in almost 19 hours.
It's 4:22 AM...why am I still awake?

Jumbled emotions

I'm sad
I'm happy
I'm grateful
I'm a wreck
I'm lost
I'm found
I'm loved
I'm alone


I have not exactly been able to put a word on my emotions these past few days. I'm such a roller-coaster right now. I don't necessarily feel sad or depressed, but then again, I don't exactly feel happy. Numb? Is that how I feel? Confused? I don't know.
Yesterday I cried on and off at least 5 times. I feel like crying right now. I'm smiling because there's so many reasons to smile, but then again, there's so many reasons to cry. I'm tired. I'm tired physically and emotionally.

Introduction and poem

A little over 17, that’s how old I am. More than 6,209 days of constant fighting. Cystic Fibrosis: My greatest enemy, but yet my most beautiful blessing. I have every right to break down at any given moment, but I don’t. I look my enemy in the face everyday with determination and I say, “You will not destroy me. Not today. Not ever.” If you endure every battle with an everlasting amount of optimism and hope, you will make it through anything.

Breathing doesn’t come easy for me, but I am grateful for every breath that I take.

The constant sounds keep playing through my ears.

The constant wheezing, coughing, and huffing; day after day. year after year.

The tubes, the machines, the feeling of no escape.

There's a pain on my shoulders from all of this unspeakable weight.

"But you don't look sick.." is a phrase I have learned to neglect.

It may be true, but that’s because the inside of me is something I have learned to not reflect.

It's a fight against my own, compelling self.

It's a fight against this vague, indecisive health.

I have learned to accept fate, defeat, and unwanted struggles at a very young age.

It's something you learn to do after they have constantly been engaged.

A lot of times, I feel my mind and body becoming weak, surrendered, and numb.

In these moments, I lose myself and the tenacious person I have become.

When you fight for so long and see nothing but disappointing and waning results,

You tend to feel this emotion that beats on you like a slow, temporal pulse.

It's okay to breakdown. It's okay to let your hurt and feelings show.

Just remember that you have this moment today, and look forward to tomorrow.

It may feel like you have reached your breaking point or perhaps the end of your fight,

but remember that there's a will in your heart that only you can ignite.

Your struggles may be unbelievably hard, but they were given to you to conquer,

So, play your part with an undetermined amount of strength and never fail to prosper.

Cystic Fibrosis Awareness month!!

Yeup. It's officially the first day of Cystic Fibrosis Awareness month! The walk is only 4 days away!!
I had an appointment yesterday and overall, it wasn't too bad. My weight went up to 110 from the 104 on admission. My PFTs were 45, which is lower than when I left the hospital (51), but it was expected. I'm not feeling completely up to par yet. I'm still extremely exhausted and fatigued. I'm finishing up another week of home IVs and going back next Monday to see how things are.
Unfortunately, two of my close CF friends got admitted yesterday. Hannah had been on Bactrum (oral antibiotic) for roughly two weeks and still wasn't doing better, so she went in. Ilene was doing pretty good a couple weeks ago, and then suddenly got really sick. Her PFTs were 27 yesterday. Our CF is really identical which is weird because it affects people so differently, PFT wise I suppose. Me and Ilene usually get admitted together. Our PFTs are always identical. Last time we were in together (March) our numbers dropped the same amount and went up the same amount. I think there's something going around that we're all catching though because the same happened with all three of us. We were doing really good, and then BAM! We're instantly sick.

I also have some other news. I entered one of my lastest CF poems into a poetry contest and out of over 10,000 contestants, I placed in the semi-finals! My poem is going to be published in a book called, "Stars in our Hearts." I'm allowed to write an introduction, no more than 100 words, to go on it's own page along with the poem. I finished writing the introduction two days ago...98 words! I'll post my poem and the introduction in another post.