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.

Friday, April 27, 2012

Keep holding on

All so much to lose, and all we can do now is wait, but don't be afraid
The water's still rising, but here we'll be safe from
The wind and rain
All I ask is that you keep holding on
And please don't forget me just cause I'm gone
... Yesterday we had it all
Be strong and take heart and tell me you'll never let go
All we have left is each other, a promise, and hope
So far to go, and I know it feels like sometimes we
Won't last the night
It's hard to keep smiling, but focus your eyes on
Fields and skies
Take my hand and continue pressing on ♥
Yesterday we had it all- Hundred Year Storm

Thursday, April 26, 2012

You'll never know, if you never try.

Tuesday was a great day. I got to see one of my best friends, Kayla. Her school was having an assembly to talk about what CF is, the foundation, and what people could do to help. The people who spoke was a guy with CF who recieved a double lung transplant, and his wife. They both help out at the foundation and do several speeches through-out the year. It was amazing to be a part of the assembly and to see how the kids were interested in helping out. The walk is only a week and a half away and I couldn't be more excited!I had a counseling appointment yesterday and of course, it went well. I swear after leaving each appointment I feel so much better. I never really understood why, but I came to the conclusion that maybe it's because I'm actually able to come out and talk about how I'm feeling with all honesty. Being able to talk to someone face to face is so much different than texting, messaging, or talking on the phone. Michelle, my counselor, is amazing as well which has helped out a lot. At first, I was really not looking forward to starting counseling. I thought to myself, "How is it going to make me feel better when I'm talking to someone who has no idea as to what I'm going through?" Michelle always knows exactly what to say, and I know she genuinely cares about what I'm telling her and how I am doing. I guess it all relates to the saying, "You'll never know, if you never try."
Unfortunately, I have not been feeling very well. I've been extremely exhausted in every way, my lungs/chest hurt, I'm coughing more, and just overall I feel blahhhh. I guess I didn't exactly feel completely better when I left the hospital to begin with. Luckily, I'm doing home IV antibiotics, so maybe since it hasn't even been my full course, I'll start noticing a difference soon. I haven't gone back to school, and I probably won't until next week. Usually I would still be in the hospital, but I was released early, so I'm trying to stay focused on resting my body and doing my daily treatments/medications, which in actuality, I am always worrying about. Today, we had an inspector guy come to our house for the yearly inspections since we own a daycare. He just left and of course, we passed with 100%! Right now I am just laying around in my room. I might take a nap soon, although I should probably be working on my online class, but I'm so incredibly tired. For the past few days I have felt like I haven't slept in days. Oooh and I also have some good news! My car is back! We had to take my car to get fixed and it was at the place for at least a month, but yes! It's finally back! I have a mustang that was, well kind of still is, my moms. I love just driving around by myself with my own thoughts. It's relaxing. Well, I'm off to go do my IV antibiotic.
Take care,

Tuesday, April 24, 2012

Pictures from discharge day!

A lot of pictures of me smiling! But, why not? It's DISCHARGE DAY!
 Doing treatments while waiting for my mom to arrive!

              After arriving at home!

Monday, April 23, 2012

There's no place like home.

My title says it all! There's no place like home. There's no place like home. There's no place like home. Dorothy couldn't of have been more right! And it's official, I'm home! I had pulmonary function tests today and they went up to 51%! So happy! This was possibly the shortest stay that I can think of. Only a week and 2 days. My doctor let me out early since I was just in not even barely a month ago. I'm continuing to do IV antibiotics at home for another week or two. I have an appointment next Monday to see how much longer I'll need to be on them. My weight had only went up 4 pounds and is now 108, which is better than nothing, but still not where we would like to see it. This morning when I woke up I had a headache and it continued to get worse throughout the day. After I did my PFTs my head felt like it was going to explode. I couldn't move at all because any movement made it worse. My whole body was covered in cold sweat and I was exhausted from the pain. Eventually I ended up throwing up for about an hour on and off. I took a bath to try and subside the pain. It helped a little, but not much. After I took a bath I started packing up all of my things! My mom and step dad arrived around 630 and after she signed the discharge papers we were off! We went to dinner at our favorite Chinese buffet and headed home. Ahh...home. It is such an incredible feeling. It's crazy how many things can be taken for granted. Being able to get up and get your own cup of water, being able to wander around your house, hugging your family and friends, sleeping in your own bed. My bed is one of my favorite places. I'm actually laying in it right now. I just finished one of my antibiotics and it's possibly one of my least favorites. The medication smells strong of cat pee and everytime I'm flushing it into my port I can taste it. The smell and taste leave me feeling naesous and give me a headache after each dose. I have pictures that I took earlier with my webcam, but I'm currently on my phone typing this so I can't upload them. I'm way to exhausted to do that tonight, so I will tomorrow. Well, I'm off to get some sleep in MY bed. I have an exciting day tomorrow which I will tell you about later! Goodnight and take care, Alexandria.

Sunday, April 22, 2012

Cystic Fibrosis phases of coughing spells

At first we may just be laying there,

and then all of the sudden we have a simple cough.

Of course we know that it will continue. We feel our lungs and throat being prepared.

We are forced to inhale deeply because in any instant we will not be able to breathe.

We begin coughing which leads to gasping for air.

We start hoping for it to be over because we don't know how much longer we can last without not being able to breathe. By this time our face is beet red, our whole body is aching from the intense muscle tightness, and we begin to feel faint.

After we have coughed, choked, and suffocated for several minutes we start gasping for air to catch our breath.

Our lungs burn and for the next several minutes we try to regain our composure and strength. 

And then...well...we are done and continue on with what we were doing no matter how many coughing spells we have through-out the day because to us, this is normal.

I'm alive.

I'm sitting here in my hospital bed thinking. Thinking about everything. Life, myself, friends, past friends, family, doctors, technology, and all of the sudden I say this..."I'm alive." I'm alive and I'm breathing, maybe not with ease, but I'm breathing. I'm alive and my god does it feels amazing. I love being here despite my struggles. I love knowing that I'm surrounded by people who care for me as much as I do for them. I cherish every moment in this unique, challenging, but yet beautiful thing that is called life. Some people believe and have said that it's the simple things in life that matter, and I couldn't agree more. The simple things all lead up to become the biggest treasures. That hug while greeting someone, a kiss before bed, a smile just because, family gatherings, laughter with friends, those moments where you think, "this is why I love you."
Those moments where you think,
"Damn. I'm alive."

Saturday, April 21, 2012

50 things to do while in the hospital

Here's just a list of some random things to do while being trapped in the hospital for an extended period of time to make it more easier/enjoyable.
1. Read a book
2. Write a book
3. Stalk people through Facebook
4. Play pranks on the nurses/staff
5. Watch T.V. and then see food commericals then crave said food and think about it for hours.
6. Lay in bed and sigh dramatically because you're bored out of your freakin mind.
7. Clean your room even though house-keeping does it for you everyday.
8. Play basketball with paper towels and a trash can.
9. Stretch so you don't fall flat on your face when getting out of bed in what feels like a month.
10. Take a two hour shower that you don't have to feel guilty about since the hot water won't run out.
11. Walk around the floor and wave at the other patients to brighten their day.
12. Write simple notes to other patients (if allowed) that will make them laugh or feel better.
13. Go to the cafeteria/vending machines and get a bunch of junk food then pig out and watch crappy T.V.
14. Draw pictures and put them all over your room to make it look less bland.
15. Buy a new pillow and have it shipped to you so you don't have to sleep on a sheet covered plastic thin nothingness that shouldn't even be considered a pillow--or better yet, just bring your own.
16. Take millions of pictures.
17. Make a video.
18. Get window paint and draw all over your window.
19. When someone walks by your room make faces, hide under the window and pop up, or just stare at them with a intense expression.
20. NAP!!!!
21. Just sit there with the T.V. off, computer off, and be awesome.
22. Think about the important things in life and things that make you happy so you don't become depressed.
23. Remind yourself that "Today is a great day to be alive."
24. When a nurse is flushing your PICCline, port, or IV yell "Ouch!" and see their reaction...priceless!
25. Nap some more.
26. Order delivery!
27. Ride around on your I.V. pole.
28. Play hide-n-seek around the floor.
29. Play video games/card games with someone on the staff.
30. Hit your nurse button and just tell them you wanted to say "hi"...trust me, it boosts their mood no matter how busy they are.
31. Shoot people with a Nerf gun.
32. Make slushies out of ice and juice.
33. Don't forget to put Germ-x on!
34. Pretend to be sleeping and scare someone when they try waking you.
35. Decorate your room with balloons, streamers, and all of that fancy stuff.
36. Make a big "Thank you" card for the nurses and PCA's.
37. When getting wheeled around to X-rays, PFTs or whatnot say "Wheeeee!" to make it less boring.
38. Copy a nurse after everything they say and see what they do..don't get carried away though.
39. Make a student nurse that you don't like do a bunch of running around and random stuff.
40. Write a list of things to do in the hospital.
41. When someone walks in the room have it as dark as possible and then turn the light on with the remote and say, "I've been expecting you."
42. Watch Youtube videos.
43. Catch up on homework...slackers.
44. Get under your bed and when someone comes in say, "Help! I'm stuck."
45. Convince a nurse, PCA, or resident that your real name isn't what they have listed or say a different name when they ask for your name and date of birth before giving medication.
46. Post all over Facebook how bored you are and update your status every 20 minutes...not really, that's just annoying, but I've seen it happen.
47. Be jealous of everyone that is out and about.
48. Convince family, friends, and even some strangers that you have a serious disease that is going around and they will eventually catch it from coming into contact with you.
49. Dress up in your street clothes and get around even though you're just gonna sit in a bed all day so that way you don't feel like a complete bum.
50. If you have room service call them and ask for one of everything on the menu.

Monday=the day??

On Monday it showed that my lungs were only functioning 33%. My normal is roughly around 55%. I don't really know what caused me to become so sick. I was literally just in the hospital a little over a month ago. I guess it's just the typical CF. I'm honestly not even sure why I'm so surprised that my health did that. Since then I have been improving more and more everyday. I am no longer on continuous oxygen, I'm able to get up and walk around, my pain has almost completely gone away, and my breathing has improved. I've had some of my favorite nurses and PCA's these past couple days which makes everything so much more tolerable. I am used to being in the hospital and having to put my life on hold, but sometimes it just really gets to you and when you have to deal with people you don't necessarily like, it makes it much more difficult. Luckily, I love about 99% of the nurses and PCA's. I'm just grateful for how amazing this hospital is. The food isn't bad, the staff is wonderful, and overall it's an amazing enviroment. One of the child-life specialists and I have gotten really close over the years. We're in the type of relationship where he can walk into my room and get into my snack drawer and just take anything. He's retiring at the end of May and it will be nowhere near the same when he's gone. Me and my mom got him a present and it looks like an award that has a star on it that says his name and underneath it says "My universe will never be the same, I'm glad you came. Love, Alexandria" I'm planning on giving it to him tomorrow when he comes in. I'm super stoked!
I have PFTs again on Monday and if they are higher then I'll be able to go home with home IV antibiotics. I'm fairly certain that they have improved, so I'm planning for Monday to be the day!
Our schools prom is today which is crazy. Senior prom and I'm here at the hospital. I wasn't able to go last year because I was sick as well. I hadn't been feeling that well and the day before prom I started peeing a bunch of blood and was having fevers because of my damn kidney. I'm just staying positive and being grateful that I'm alive today, even if that means missing my senior prom, last homecoming, and more than half of my whole senior year.
I was able to leave the hospital for a couple hours on a LOA (leave of absence). Me and my mom went to our favorite chinese buffet, got our nails done, and walked around. The guy who did my nails put a purple ribbon on my thumbs. I love the first second of stepping out into the fresh air after being confined in the same room for days on end. The moment that the air hits your face is unbelievable. I know I sound incredibly cheesy right now, but who cares.
So, I think this is enough updating and rambling for now.
Keep calm and breathe on,
Miss Alexandria

Monday, April 16, 2012

Some pictures I took while waiting in the E.R.

Student nurses..not a big fan

Found out I had a student nurse today..sigghhh.
I know it's not necessarily their fault that they don't know me like the other nurses. Most student nurses treat me like a 5 year old. The one I have today sat and watched me take my pills which instantly sets me off. I've been doing this for almost 18 years lady..I'm gonna take my pills! Then she was trying to strike up conversation while I was doing my nebulizer..really? I thought the whole point of me doing a nebulizer was to sit there and breathe it all in. And theeennn she asked me if I was going to order breakfast and I said I wasn't sure and she said "well. just let us know when you do so you can take your creon." For those of you that don't know, creon are pills that I take right before I eat to help absorb my food. She kept telling me I needed to take them. I don't have a certain time I have to eat. Oh boy..and the day has only just begun.
I have PFTs (Pulmonary Function Tests) later today to see where I'm at. I'm feeling sort of better. I'm still coughing like crazy, getting easily short of breath, and my o2 levels haven't been as high as they should be. I've been on and off oxygen. Luckily I've been fever free though!
I'm still not sure how much longer I'll be here...Its only been two days, so probably a week at the least.
I feel like doing something creative..reading, writing a poem, drawing...something..soo till next time
With love,

Sunday, April 15, 2012

Welcome to my life

Unfortunately, I didn't improve. Over Easter weekend I was running fevers. Monday and Tuesday I didn't have any, but it came back on Wednesday with more vengeance. I had a counseling appointment and my counselor could tell by looking at me that I was not feeling well, which is rare because I'm so good at hiding how I really feel. I left my appointment early and went home. On Thursday me and my best friend Kayla had an interview with the local newspaper about what CF is, how it affects me, and to get information about the CF walk she is holding at her school. From the time I woke up, I could feel myself becoming worse and worse. My breathing was incredibly difficult. I was having coughing attacks over and over. By that afternoon I started running fevers again. The whole night I was up coughing and struggling to catch my breath. Later that night I broke down crying because of how awful I felt.
This continued on until Friday. My fevers were nearly reaching 103 and they left me in pain all over. I was coughing so hard that it felt nearly impossible to breathe because of how sore my chest was. Everytime I would walk, my head began to spin and I wanted to pass out due to lack of oxygen and the fevers. My mom could tell just by my breathing that I was not doing well at all. She called my doctor and scheduled an appointment for that Monday. Friday night my mom almost took me to the hospital because of how bad it was. That night I was up every 30 minutes trying to catch my breath and having coughing spells. On Saturday morning we decided that it would probably be best to just go to the hospital. We had to go through the E.R. since this was not a prior planned hospitalization. At my arrival I did vital signs. My weight dropped from 111-104. My 02 was struggling between 89-90. After getting an E.R. room I was taken to get x-rays, gave a urine sample, got my port accessed, was put on oxygen, and got asked the usual questions when arriving in the hospital. "What brought you in?" "What medications are you currently on?" "On a scale of 1-10, 10 being the worst, what would you rate your pain?" And of course all of the questions are asked numerous times from numerous people. After about almost 6 hours in a room that is smaller than my bathroom, I finally got an offical room. Luckily I had my favorite PCA. My mom left to go get subway once we found out I had a room. She and my sister stayed until about 10:30 and then left to get a hotel room. Right now I'm just doing the usual course of antibiotics and resting a lot.

Friday, April 6, 2012

Sleep, here I come!

So incredibly tired. That's all I could think about all day. My eyes were constantly burning and craving sleep. I had a fever on and off. It was only a low-grade one, but it was still making me feel like a complete mess all over. I guess waking up to a better morning didn't really work out, eh? I went to Wal*Mart earlier and actually almost started crying because of how difficult it was to walk around. My whole body ached, my lungs were working harder and harder with every step I took.
I had an appointment with my doctor who prescribes my "happy pills." I have actually been feeling pretty good in that department. At my last appointment we changed my dose and made it higher because it did not seem to be helping at all, but luckily I have been seeing a difference now. My dosage stayed the same and if all goes well, I don't have to go back for another three months. :) Yay for good news!
I'm laying in my bed right now fighting the urge to keep my eyes open.
Well, I just have to keep pushing through and maybe, HOPEFULLY, I can kick this out of the way without needing antibiotics. We'll see.
I shall leave you with some pictures I took today. In the last two I was outside.
Till next time,
Miss Alexandria

Wednesday, April 4, 2012

Hoping for a better morning

How I was feeling this morning
Crossing my fingers to feel better!

Texting possibly consumes too much of my life
My Vest!!

Woke up this morning and my whole body felt like lead.
I was exhausted..from what? Nothing. From breathing. Trying at least.
Every day this past week that I have woken up I have felt worse than the night before. Every night it has been harder to sleep due to coughing spells. I'm trying to stay positive and keep on going, but this morning I really didn't want to get out of bed. Of course, that wasn't an option. Treatments, pills. Same old routine. So yeah, not such a great morning, bbuuuut it did improve through-out the day. Took my brother to get his shots and saw a huge bulletin about CF and it put a smile on my face. Not very often do you see CF awareness, especially in small towns. I also got to see one of my best friends. It's always good to see her, no matter how I'm feeling. I sometimes don't like to be around people when I'm not feeling all that well, but she has been there at my worst. For example, in December when I was in pretty rough shape, she came over and sat on the couch with me. We didn't have to be out doing anything, and I knew she didn't mind. It's great to have people like that. We went to one of our favorite gasstations and got slushie Mountain Dews and peanut M&Ms. Yumm.
She came over and we talked about tattoos, people, and maybe someday, if we become motivated enough, getting together and doing extreme workouts everyday.
She eventually left because she has a fire-department meeting. She's kick ass and has unbelievable determination. She's working on becoming an EMT and volunteers on ride-alongs and the fire-department. She did a CF walk for me last year and is doing another this year. She's been working extremely hard to pull it off. I give her tons of kudos.
Since she left I haven't really been doing much. Just laying around my living room and taking pictures with my webcam.
Why not, right? It's pretty chill at my house right now.
Let's hope I don't wake up tomorrow feeling worse :)