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

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,
Alexandria

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.

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

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.

arms

legs

lungs

chest

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 :)

Wall of strength

Right now I am sitting in my room eating a delicious pizza and drinking a sugar free Red Bull...talk about relaxattioonn.

This weekend was very uneventful, which is never a bad thing. Sometimes it's good to just wind down and be with your family. Actually, most of the time I am. I used to constantly be out and about and running around with friends. I was never seen at home on the weekends, in fact, my mom would question me if I were ever home on the weekend. Now, I spent nearly most of the time here. I guess maybe it has something to do with comfort. I'm comfortable being around my family while doing treatments, coughing, or if I'm not feeling well. I'm not saying that I don't have friends that I can't be comfortable around, because I do indeed have some. I don't know..it's just kind of hard to explain. I think another reason may be because of safety. I know that if something were ever to happen, my mom would know exactly what to do. There have been many incidents where I would have been completely lost without her. But then again, I feel like I may be putting my life on hold by just being at home all the time. I want to be able to go out and live a teenage life without having to worry about bringing all of my medications, feeling well enough, or being back in time for a treatment. It's frustrating, but I suppose we all have to do things we don't want.

So anyway..this weekend

I wasn't exactly feeling up to par. I'm not sure if it's my sinus's acting up or if I'm full on getting sick again. I've been really congested in my nose and also my chest. Coughing more. Feeling short of breath. Waking up in the middle of the night hacking. Lets hope that it doesn't get worse because I literally just deaccessed myself and have been free from antibiotics for only a couple days. Let me just say that that is one of the best feelings. The first shower after deaccessing yourself is like heaven. I savor every second of it and become fully dissapointed once the hot water starts to run out. I actually think this has resulted in me savoring every shower I take without being accessed.

On Sunday me and my mom usually go grocery shopping and get supplies for the week ahead. We own a daycare so we have to make sure we have planned lunches and snacks for every day of the week. We came home, unloaded groceries, and started making dinner. I made a bacon, ranch pasta salad with peas in it and it was incredibly delicious. My mom made her amazingly mouth-watering hamburgers. I swear she could be a chef. We always talk about her making her own restaurant and how popular it would become, but we don't exactly have the time for that to actually happen. I love dinner time. Dinner time means family time. Family time means conversing, laughing, and just realizing over and over again how much you love them. I literally sit at dinner every night and think about how much I love my family. My sister, brothers, mom, stepdad, stepbrothers. They are all a piece of me that helps build my wall of strength.