I'm young. 18 years old to be exact, but my heart and mind say otherwise.
At a younger age I was never able to understand most things that were brought upon my life. I was constantly facing new struggles that kids I was surrounded by weren’t dealing with and may never have to. I grew up surrounded by medical terms, doctors, and hospitalizations. I became familiar with medication lists so long that they consumed 3 full pages.
My whole life I have been raised through challenges, broken dreams, and learning to adapt to new lifestyles time and time again. As I began to get older and wiser I learned to accept my fate in life, I learned to face difficulties with nothing but a positive outlook, and I learned that there is no way to change your past, but there are ways to make your present and future worthwhile.
There have been times where I was not able to keep my vigorous frame of mind. In these moments I would feel myself slowly drowning in sorrow, defeat, but most of all, guilt. I felt guilty because, even though I may not have been in the best situation, I was far better off than some people in this world. These are the moments that have helped define who I am. People will hear my infectious laugh during my most difficult intervals, I will have an everlasting smile on my face when all I want to do is break down, and no matter what is going on in my life, I am always putting forth the effort into making others happy.
For me to be able to say that I am satisfied with myself, life, and all of its entities is a wondrous feeling and gift. Every day I fight the odds and live with a mad, passionate determination, which no matter what, will never be destroyed.
I’m young. 18 years old to be exact, but my heart and mind say otherwise.

Tuesday, July 24, 2012

Appointment yesterday

I had an appointment yesterday and it didn't go as well as I had expected. My weight went up one pound to 108 which is amazing, but my PFT's (lung functions) dropped from 48% to 32%. I was expecting and hoping for my PFTs to have at least gone up a few, but nope. I have been going to the track and playing tennis for a few weeks, I've been doing all of my treatments, taking all of my pills, drinking extra water...I do all of this and THAT happens. And also, I haven't exactly been feeling too bad. Maybe short of breath and tight-chested a little, but nothing that I can't manage. Sooo yeah. I didn't get admitted because I said that I'm actually feeling pretty good. We're being optimistic and shooting for a two month return...let's see if I can make it that long. I woke up this morning and suddenly feel awful. I wonder if it was just wishful thinking that was causing me to feel so well. I kept saying to myself, "my appointment will go good, maybe even amazing." But now, I KNOW that my PFTs are crappy, so maybe I'm just out of wishful thinking. I slept in until about 11:30 this morning and as soon as I woke up I knew that it was going to be a crappy day. Overnight I had woken up a couple times having a cough attack and then I was trying to catch my breath and that has been going on ever since I woke up....grrrrrr.
I took my sister out to lunch and to the mall after my appointment for her birthday (turned 15). I was completely exhausted after going to only a few stores.

In other happy, positive news: I have officially scheduled classes for my fall semester as a freshman in college! When I went to my advising appointment to figure out what classes I'd be taking, I told her about having CF and missing school and all of that fun stuff. I could instantly tell that she really cared about what I was saying and she had told me that I should have no problems with missing classes, I just need to inform my professors about the situation. I'm going to a community college and there's a building that is honestly only about 5 minutes from where I live and only about 600 students go there so I think that definitely will help a lot. My classes start August 27th and I am taking a english class and health/wellness class online and a math and some required freshman class, which is only a month long, in the classroom. I usually dread going to school, but I know I will be surrounded by a completely different enviroment with more mature people. They also told me that since I am taking night classes, most of the classes will be filled with adults.
I think it's nap time for now.
Till next time,
Alexandria


Me and my sister

Wednesday, July 11, 2012

I'm still going

So, I started going back to the track a couple days ago..surprisingly. I have been feeling sort of upset lately which makes my mind go crazy. The other day I was on the verge of tears several times and out of anger and frustration I just put on running gear, went to my car, drove to the track, and ran. Oh my goodness. My lungs burned soooo terribly bad. I kept making new goals for myself. "First I'll do 55 meters of running, then 75 meters, and eventually I'll do a lap." (I ended up doing 3 1/2 miles total) When I finished that first lap I was gasping and gasping and gasping for air. I started to get lightheaded and really thought I was going to pass out, but I didn't. At the halfway mark I was in so much pain, but you know what I did? I smiled. I smiled and I laughed on the inside at my pitiful lungs..actually..at this pitiful disease. It tries sooo hard to tear me down everyday, but I'm still going. I'm running this lap and I'm doing it with a smile despite the pain. I then began to think about so many other positive and uplifting things..maybe it was the inspirational music playing in my ear or maybe a spark just lit in my head..I don't know, but it was beautiful. I began to think about how many wonderful things I have in life...the "simple" things. I'm spending hours everyday on treatments, I'm suffering through pain, tears, and fatigue mentally and physcially, I encounter countless days in the hospital..I'm doing all of this, but I still keep going. I have a reason to keep going and that means more than anything to me. I'm surrounded by SOO much love everywhere, even on the days where I'm pissed off at everyone and everything.
This life...
it sucks,
it hurts,
it's draining,
but...
it's beautiful,
it's bittersweet,

it is all that we have got, so make it worthwhile.

LIVE...don't just exist.

Monday, July 9, 2012

Everyone has haters, right?

I deaccessed the day after my last post, which would be Wednesday, June 27th.
All was well..for a little bit. It started to get REALLY hot..up in the 100's actually and the weather wasn't mixing so well with my lungs. I pretty much have stayed inside as much as possible where all of the air conditioners and fans are running. It was causing my lungs to feel tight and worthless which then was causing me to breathe heavier and with more effort which started making me cough a lot more which was taking up a lot of energy which thheenn started causing my weight to drop and with all of that my energy level started to go down way low. I was sleeping basically through-out the whole day, only getting up for treatments or to eat. So yeah, it's all a big gigantic circle of CRAP!

The weather is supposed to start getting better this week..around the 80's, so hopefully I'll start feeling better. Actually, I almost already do. I'm not as exhausted, but my weight still needs to come up (104 right now) and I'm still short of breath and coughing more. Oooh yeah, I also had some fevers last week...goodness gracious.
Speaking of last week, my mom had the WHOLE week off. No daycarreee kids all week. Although, I do have to admit, I did start missing them after a couple of days ;). I mean, they're practically family.

We had the whole downstairs carpets professionally shampooed and since we weren't allowed to be anywhere except the kitchen, we went and stayed at a hotel about 25 minutes away. Me and my younger brother got dropped off and everyone else went back to the house to paint the whole front porch. I stayed back because I needed to do treatments and my mom didn't want me around the hot sun or the paint andddd Ethan (little brother) stayed with me for company. It was very relaxing. They didn't come back until around 9-10 and they still weren't finished so all day it was just me and my little brother.

I went to my first counseling appointment for the first time in 5 weeks, which might not seem like that long, but trust me, it was. I felt sooooo much better after leaving...always do :).

I deactivated my Facebook account because I have just felt very frustrated by a lot of people. Right now, I just want to focus on who and what is important to me.

Uhmm hmm..let's see..what else...I dyed the ends of my hair with kool-aid, yes..I said kool-aid. I guess it was the "cool" thing to do in the 80's, says my mom. I just felt the need to do something different with myself. I actually ended up doing it three times..The first time the color turned out just how I wanted, actually even better, but I put all of my hair to one side and dipped it in the kool-aid, so only some of the other side of my hair got dyed. I then tried to do it a different way to see which one I liked better and added some purple, but it didn't even turn out. I then finally fixed the other side with the same color I originally started out with. It looks green in the pictures that I took, but it was actually a bright blue/tealish color.

I got a LOOONNGG, very harsh, comment on my new video, "I live to inspire" talking about how I'm a narcissist and how I make a fool of what CF is. Apparently I make it seem a lot worse than what it actually is and that I'm a child who should just stop. Oooh, and apparently my so called "inspiring" videos and pictures aren't inspiring at all and make people want to vomit and cringe. It hit me hard at first, but then I realized that this person doesn't know why I do the things I do. I never make my videos or upload pictures thinking to myself, "let's see how many people will like this" and I most certainly have never done any of it to "inflate my already high ego." I have always done all of it to help people, not just CFers, be inspired and give them strength in times of need. It's who I am and it's what I do. I won't become weak or stop what I'm doing because one person isn't inspired by it...everyone has haters, right?

4th of July; Didn't really do much. We didn't exactly have very many choices since I couldn't be outside. My whole family piled in the car and we went to buy a bunch of fireworks and lit them off when it started to cool down and got dark enough. I sat in front of a fan outside while all of them lit them off. I think this was the first year that it was legal to light fireworks off in my state.

Me and Ilene started a new thing where we send pictures to each other everyday. We should of started doing it a long time ago! Hannah had an appointment last week and her PFTs dropped from 78% to 67% and her weight went down 7 lbs. She got put on oral antibiotics and is actually going back today to see if she has improved (fingers crossed). We have been talking everyday now and I feel as if we've gotten closer..more than just "cysters." Best friends. We're so alike in every way that it's crazy, and it's not just because of our CF. She sent me a package a little while ago and it actually almost brought tears to my eyes. It had a bracelet (loovee bracelets) that I put on instantly and haven't taken off yet, a little change purse, and a CD..the CD...wow. The front has a picture of me and a picture of her and we're both holding up our "CF sucks..." bracelets and it's called "24 Things to Remember." There are 24 songs on the CD and each one has a meaning. She didn't put the name of the song, but instead, she put the reason as to why it's on the CD. For example, some of the names are.."Don't fear what you can't control," "I'm walking this road right beside you," the last one is perfect..."24. We all have our problems, our monsters, our deadly thorns. Cystic Fibrosis is ours, so let's do this." Ahhhh!!! I can honestly say that the CD is one of my most prized possessions. Unfortunately, I tried putting it in everything, car, three different computers, CD player, and it wouldn't play, but she is sending me another copy. I really wish she knew how much it means to me. Our birthdays are the same day and I have a pretty good idea in mind for her ;)

I can't seem to upload the other pictures, so I'll probably work on uploading some later, or I'll just upload them with the next post.

Well, thank you to everyone who managed to stay with me during this long, probably boring, post.
Till next time..
Alexandria