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

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.

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

It will happen

My appointment yesterday wasn't to bad overall.
I was expecting my PFTs (lung functions) to have dropped more than they did because of how I had been feeling.
Weight: 107 (3 more pounds since leaving hospital a week and a half ago)
PFTs: 48% (50% when leaving hospital)

I'm going to finish up the rest of the IV anitbiotics that I have and then I'm deaccessing myself and going back in a month!
I can deal with that :)

We have decided that maybe I have been so tired because of this harsh heat.
"Drink plenty of fluids.
Stay inside.
Eat LOTS of sodium."

Not exactly sure what is causing the low-grade fevers.

At my clinic, all of the CFers sign in and then go back into a door that has a bunch of other smaller rooms that we go into. (They don't make us sit in the waiting room to help us stay away from gerrmmsss!!) Anyways, there was another girl, who is about 13ish, that went back into the door with her mom and when I went back there wasn't any rooms open so they were standing there waiting and the mom said, "This is Shelby, the girl that you started emailing a while ago." I was so lost for a second because we hadn't wrote eachother in a couple months, but then I remembered! I was so surprised that she had remembered my name, (she heard it when I was checking in). The people at the clinic call me the "ring-leader" of the CF pact. They always give me contact information of other CF girls which allows me to get ahold of them so they have someone, just like them, to talk to.
I love being around other CFers in person.

Speaking of which, me and Hannah have decided that once we're cured (it will happen) we're throwing a HUGGEEE party with all of our friends and family and Ilene's and Laura's family and once the party is over, we're jumping on a plane to Hawaii!!!
One day, it will happen.
One day.

No one knows your body better than yourself

Slight fever? Seriously?
I don't get it. Well yeah, actually I do.
I have Cystic Fibrosis..that's why.
That's why, even though I've been on IV antibiotics for almost three weeks, I still feel sick. I do 3-4 treatments every day and STILL get sick.
I do this and I do that, over and over and over again.
I haven't had any energy since before I got admitted this past time. I've been dragging myself around just to get by everyday.
I'm freakin tired.

Ever since I had a really bad anxiety attack that sent me to the hospital about two years ago, my doctor always brings up my mental state. So now, everytime I mention my energy level he will say something about it. Honestly, I've been sooo much better in that department and it's aggravating when he does that. I get upset at times, but overall, I'm very happy. I have so much love and support surrounding me, and that's all I need and want.  He says, "With your lung functions, I wouldn't say that they're the reason for your excessive fatigue. How have you been feeling mentally? Is everything okay?"
Okay, doctors are doctors. That's it. He knows what CF is, how it affects the body, what can be done (sometimes), BUT HE DOESN'T HAVE IT!!
My lung functions aren't the best, my doctor has even said this to me. Now, I'm not trying to say that the reasoning for my weakness and fatigue is indeed caused by my lungs, but I honestly believe that it's not because I'm "depressed" like some have said.

Anyways, no one knows your body better than yourself.

There's my rant for tonight.
I need to try..keyword, try...to get some sleep.

Me and Kim (Josh's mom)

Me and my wonderful brother

18 days since last post? Not acceptable.

Oh boy...
I tend to be really bad at updating when sick/in the hospital and I'm not really sure why. It seems like I'd be writing more since I have absolutely NOTHING going on. Soooo..here we go.

June 3rd: Holy moly. Graduation day.
It didn't even feel like I expected. Truthfully, I just wanted it to be done and over with so I could go home and sleep. My lungs hurt worse than they had since I started getting sick again. I wasn't nervous, over-joyed, or highly excited. I was exhausted...my whole body was. I didn't want to cry for the same reasons as everyone else...I wanted to cry because of how awful I felt. I know I may sound somewhat melo-dramatic a bit, but come on now...it was my graduation day! I was hoping that maybe I would be lucky and at least feel a tad better than what I had been, but nope...my whole body went against me and did the complete opposite.
Okay, okay, so aside from all of that, I do have something positive to say...Ilene and her dad were able to make it to my graduation!! I didn't see her until after the whole ceremony, but when I did, ahhhh, it was amazing. We kept hugging eachother while knowing that the next time we were able to, would probably be in the hospital. Afterwards, they both came over to my house for about an hour while we sat around with my family and just had a good time. Hannah sent me a text saying that she was going to surprise me and show up at my graduation, but couldn't make it because she had to play in the band at her schools graduation. Bummer, bummer, bummer! It would have made the day 10x more better! Me, Ilene, and Hannah reunited again! Without doctors, residents, or nurses bickering at us.
Speaking of which..

June 4th: I had been dreading this day, but at the same time, I was wishing for it more and more. I was 98% sure that I would be getting admitted, so of course, I packed a bag. While packing, Kayla come over and brought me lunch. My energy level was so bad that I had to have my grandpa take me to my appointment. I had lost 6 pounds, which I knew because I had been keeping track, and my PFTs (lung functions) dropped from the 55% at my last appointment a month prior, to 31%. Bam! It hit me hard. I wasn't expecting them to have dropped that low. I actually told a couple people that were a bit higher than that.

On my way to the hospital!
Here's a quick list of how my stay went. (Lists are much easier)
Day 1: Vitals weren't to bad. Blood pressure was almost perfect, no fevers, and my O2 was 93, which isn't the best, but it's not the worst. I was given some oxygen because they prefer it to be above 95. I was started on my regular course of IV antibiotics. I talked to a handful of residents and nurses about my current medication list, any changes, what brought me in, how I was feeling, ect. ect... Overnight things got worse. My O2 wouldn't go above 86, and well, my lungs weren't to happy with that. I only got about an hour of sleep.
Day 2: Ilene also got admitted. I had PFTs and they dropped to 28%. I was supposed to start doing the NG tube again, but I needed the oxygen at night, so I was told to drink two boosts to help gain weight.
Day 3/4: 02 stayed below 92, and it dropped rather low at night and in the morning, but that's to be expected, so I was on continous oxygen. Ilenes 15th birthday; me and my mom got her 15 purple star balloons. :)
Day 5: O2 finally started to stay above 93 without oxygen and improved more and more through-out the day. I eventually could go several hours without needing it. Gained three pounds.
Day 6: Left my room for the first time other than PFTs and went on an LOA (leave of absence) with my mom. (LOA is where you're allowed to leave the hospital in between treatments and IV's.) Went shopping and out to lunch. When I came back, my O2 was above 94, which is a really good sign!
Day 7: Ilenes birthday party! One of the doctors allowed me to go as long as we wore a mask and stayed a reasonable distance away from eachother. Went on another LOA. Weight was down two pounds.
Day 8: PFTs went up to 50%!! Hadn't needed oxygen for a couple days. Ilenes PFTs went from 47% to 58% which is crazy!!! Hers haven't been that high in...I don't even know how long.
Day 9: Lost another pound
Day 11: Came home!!!

I'm currently on home IV's and have an appointment on Monday to figure out when, and if, I can stop them.

How I'm feeling physcially: Exhausted. Tired. Sore. Breathless. Sick. Yup. I don't know if maybe...hopefully...it has something to do with the heat. It has been in the 90's all week and it's brutual for my body. I'm trying to stay inside as much as possible.
How I'm feeling mentally: On and off. At moments, I feel like I could take on the world, and then instantly, I begin to feel lost and weak.

A couple days after I got home from the hospital, I noticed something new...and scary. My lungs feel weaker. My PFTs did go back up, not completely, but close enough, but I feel as if my lungs have weakened. It's really hard to describe, but it's terrifying to me. My body can only handle so much antibiotics, sickness, and scarring. I almost mentioned something to my mom, but I've been kind of weary about saying certain things ever since a conversation we had the day before I came home..here's how it went.
But first, some background info; My mom prefers that I stay in the hospital during my whole course of IV antibiotics because it's safer and more efficient. My normal course is roughly about 3-4 weeks.
Me: Doctor said tomorrow is the day!
Mom: Ok. I had a feeling that would happen.
Me: Uhh okay. I feel like sometimes I can't be happy about coming home
Mom: Be happy. It is what it is
Me: I cant be happy if you're going to be upset.
Mom: It's not that I'm upset or that I'd rather have you there...It's because I'd rather have you well. You're going to come home and start feeling bad and it makes me feel helpless.

Annndd that's why I haven't exactly talked to my mom about how I'm feeling. I know that it would hurt her to hear that I'm not feeling good already. I used to be really upset when my mom would mention that I should stay a bit longer, but now I understand her reasoning for it. And she's right..I do start getting sick almost right after being discharged, but at the same time, it's not like I can stay in the hospital forever.

Some exciting news: This past Sunday I got to see one of my favorite people, Kim! She's Josh's mom, the one who recieved his double lung transplant. She completely surprised me! She stopped by my house the night before, but I was at the movies so I wasn't able to see her. She didn't tell me that she was coming the next day, but she did!!

I haven't been to counseling since before I went in the hospital and I really feel like I need to go. Actually, I did have an appointment today, but my brother had to get surgery on his thumb (box cutter accident) and he had to be at the hospital the same time as my appointment. My mom wouldn't be able to be at the hospital until after work and no one else could take him, so I had to cancel my appointment. Turns out that my stepdad decided to take a vacation day which meant that I didn't need to take him. I called to reschedule an appointment and they didn't have one until next Wednesday.

Well...I think that about sums it all up.
I'm really going to try and post more. I write, but I don't ever post much of it. I need to post more than just updates. I want it to be more consistant and personal. Poems, current thoughts, rants, inspiration.


Here's some pictures to go along with everything.

We are warriors, to say the least.

The first few months of my life were critical. I was constantly being transferred from one hospital to another in hopes of finally finding the solution. There were countless moments of close failure. Tubes, machines, and monitors consumed my underdeveloped 4 pound body. A diagnosis was revealed. Yes, finally an answer, but the suffering won't suffice because of it. Literally, since the very second I was born, I have been fighting for my life.

9 1/2 years went by with nothing but a mere glimpse into the CF world. Treatments, pills, and frequent doctors visits were necessary, but they weren't entirely to the point where it controlled my life. At 10 years old, in January 2004, I became hospitalized and was brought into a part of something new that would soon become "normal" to me. Another few years passed with nothing but the daily treatment regime and every 3 month doctor visits. During my last two years of middle school I started to see the real side of Cystic Fibrosis. Hospitalizations were becoming closer together, I was diagnosed with Pseudomonas Aurginosa, and overall, my CF was getting the best of me, ever so slowly.

When high school approached there was no possibility of hiding this illness from myself. Every downfall meant an increase in permanent damage and more medications. I encountered brutal events such as coughing up blood, requiring oxygen, becoming extremely underweight, severe depression, indescribable pain, countless procedures, and seeing many others fight the same battle, but having to say goodbye at a age that is much to young.  I learned the hard way that sometimes there won't always be an answer and even though we deeply wish it to be possible, doctors and scientists aren't miracle workers. They just simply can't solve every problem.

In every CFers life, there are milestones that are reached. Through-out our lives we see ourselves decline at a devastating rate, so for us to reach a new milestone, well, it's a beyond beautiful experience. Literally every single birthday, first day of school, becoming an official teenager, starting high school, turning 18 which is the infamous day that many CFers are told they will never reach finishing college, finding your soulmate, getting married. Every goal that has been reached and every hill that has been climbed help remind us of why we keep fighting. We are warriors, to say the least. Warriors who never give up in the midst of adversity.

My health at the moment isn't doing the greatest. This past week I have lost roughly 6 pounds, my breathing becomes worse everyday, and my energy level is being sucked out more and more. I have been trying my best to make it until graduation without any antibiotics, whether it be oral or IV. I can honestly say that I am miserable right now. I was not able to even shake my inhaler in hopes of helping me breathe a little easier. But, I have made it. 


Tomorrow will be another milestone that I will luckily have the chance of being a part of. On June 3rd, 2012, I will officially become a Jonesville High School graduate.

I want sleep

I'm to tired to write. There's not really much to update anyway.
Lost more weight, lungs suck, I can't sleep no matter how tired I am, my body hates me.
I have honors night tomorrow.
Graduation in 3 days.
Doctors appointment in 4.



Yeuupp...lost more weight 

In this picture you can see the salt on my eyelid 

Exhausted from everything

Luckily, even through it all, I'm still able to smile

Still keeping up with my treatments..everyday

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