Who of you by worrying can add a single hour to his life? Since you cannot do this very little thing, why do you worry about the rest? Luke 12:25-26

Saturday, November 29, 2008

Thanksgiving and such

Piles and piles of food: turkey, dressing, cranberry sauce, pumpkin pie, peas, rolls, green bean casserole, corn, sweet tea and I don't even remember what else! Food galore! And yet, I ate almost nothing.

The worst part of Thanksgiving is when you can't have any. My appetite went out the door that day. I munched on some food, forced more food down my throat, and told my mom that if I ate anymore, I would be sick. And just like that, my Thanksgiving meal was over. I was more frustrated than you can imagine. Thankfully, I still got to enjoy the time being with my family, which is ultimately more important than the food.

Since Wednesday, I have not left the house. Is it just me or are the rooms getting smaller??

But now! I'm leaving to go to Joanne's to buy fabric. :] Yay!


Thursday, November 27, 2008

PICC vs. Pliers

Wow. Scary and funny at the same time. So at the end of the PICC line is a screw-like apparatus where a syringe or antibiotic dispenser are able to screw on to it. This is a normal thing. What's NOT normal is not being able to UNSCREW it after the antibiotic dosage is over... and that's what just happened here.

My mom hooked on the antibiotic tubing at 10:30. 11:30 rolls around and the antibiotic is done. I'm sitting in the spare bedroom working an online crossword puzzle. "Mom, what's a 3-letter word for 'Ill-mannered irresponsible man'?" "'Man'?" "Tried it, no. Guess again..." While I was thinking, she's trying to unhook the tubing from my arm, without much luck. This is not really that unusual seeing as my mom has arthritis troubles and has sore hands and wrists sometimes. So I try. Nope. Hmm... we keep trying but still no luck. Time to wake the man of the family, but even HE can't unscrew it. "That means it's time to get out the pliers." EXCUSE ME?! Pliers twisting on a piece of plastic that is attached to tubing going into my artery? Haha good one Dad....."

Not a joke. He comes back with those shiny, metal pliers and my eyes widen. I foresaw horrific images of awful tugs and my PICC line coming out. But Dad was very careful and got it off successfully. WHEW....

So that was my excitement that I could have gone without. And that explains my adrenaline rush and the reason I'm still up at 12:11 on Thanksgiving morning.

Yum Turkey-Day! Let's hope I have an appetite later today and can actually eat something. I do love Thanksgiving...

But for now, sleep.


P.S.: The word on the crossword puzzle was "cad." *shrugs*

Tuesday, November 25, 2008

Oh the Irony

I go into the hospital feeling fine. I leave feeling like crap. Ooooh the irony. Is this something I picked up from the hospital? There were very ill children in the rooms surrounding me. All it took was one germ crawling across the hall, under my door, and onto ANYTHING that I drank, ate, or took via IVs. Or is this something I picked up from the boyfriend? He's been sick too. Or did he get it from me? Or did HE get it from the hospital when he visited me? OR is it my sinus infection gone bad? The world may never know.

Regardless, the end result: I'm sick. How can someone on IV antibiotics get sick?? Not sure, but I did. lol. Naturally. :P

Stuffy nose, hacky and chesty cough, tired, and dizzy on occasions. Everyone says that sleep is the key but with these IVs, sleep is still inevitable. Sure, I get more sleep at home than I did in the hospital, seeing as no one is checking my vitals every hour, but sleep is still interrupted. And I'm REALLY tired of being couped up in the house, which isn't helping anything. Getting anxious. asdkjhgakldkjf.

I know it sounds like I'm complaining, but I'm not trying to. More of just commenting to myself on my blog. Keeping a personal record of my health and noting the inevitability and irony of my staying sick until my IV comes out. But, to make things EVEN more interesting, if my PFTs are worse than before I got the PICC put in, then the PICC stays in. That would not be optimum in my personal opinion. We shall see.

We shall see.


This was the PICC when I had it put in. It look a little different now but the same idea.

Monday, November 24, 2008

Reason #581 I'm not going to Med School

So I've got the PICC line in and they have to change the dressing (bandages) on it every week. Today was the day. Did I mention the tape is *extremely* painful to take off? And it makes me really nervous when the nurse peels it back because it's so close to the LINE GOING INTO MY ARTERY? I thought I was going to be sick today when she changed it. Pain + fear = revisiting lunch. This nurse is fantastic, don't get me wrong, but my stomach has been less than iron these past few days. Luckily, lunch kept it's natural route south and I was ok. The same thing happened sophomore year when having my annual blo.od work done. They pull an INSANE amount of blo.od from my arm. Plus it hurts and I'm anxious... and I remember that there were 3 prisoners in the room because one of them was pregnant... that didn't help my situation.

Anyway. Med school. Not for me. Noooo siree. If I could even make it through med school, the only field I would have any desire to work in, I can't. So no thanks!

However, I do have VERY preliminary, yet nevertheless exciting news. I'm in contact with the director of fundraising in the East Texas/NW LA for the CF foundation and I'm coordinating a meet with her to talk about what the Magnet soccer teams can do to raise money for research! I'm *BEYOND* excited. I had always wanted to do something but always found options out of my reach. Then dearest Alissa told me that she wants to help out and we're going to get the soccer team, and school clubs, to organize and work a walk/run or something. I can't wait to see what this team can do, on and off the field!!! :]

That's the brief update for today.


Saturday, November 22, 2008

Ahhh Break

Even though I'm "home-bound" and ill, I still have yet to slow life down. I got home from room 521 at 4:30 on Wednesday. I grabbed some food and made it to practice by 5. I went home, ate dinner, and was sick. Not a good sign.
Thursday morning I went to school. I came home after that and took a niiiice loooong nap before my soccer game. (No I didn't play. It was only a scrimmage that we won 9-0. Not worth risking having a main artery pulled out..) Then came home, watched TV, was sick again, and went to sleep. Friday I woke up and went to school AGAIN. Did I mention I did *nothing* at school on Thursday or Friday. Excuse me, I took notes in my Chem 2 class, but that was it for a full day of school. (YES, IT WAS WORTH IT, MRS. CLEMENTS! lol) I went to go see Twilight after school, came home, and didn't sleep well.

So here it is Saturday morning, almost afternoon. Overall, I'm still not feeling well, but I'm being patient. For some reason, my arm is sore today. *shrugs*

So not a very exciting update but I needed something to do that didn't involve me getting up and cleaning my room, which I'm about to go do. I'm not feeling well at the moment and don't exactly want to be moving around much. But alas. Things I must do anyway.

Maybe with this week of rest, I'll feel better! I have been instructed to have a good day today and that's what I plan on doing.


Wednesday, November 19, 2008


Finally! I'm on the afternoon dosage of my antibiotics right now and then I'm going home! :D I'll miss the nurses here, but I'll be glad to be home. No more Room 521!


Tuesday, November 18, 2008

The Adventures of Room 521

Day 1:

I had to wait until 2:40 to get my PICC line put in, but it's in. And I did it without any mind-altering to calm me down. I'm *really* proud of myself. I just took my iPod with me to the radiology room and listened to the guys jokes while putting it in. It went well.

I had quite a number of visitors today. That always makes me happy. And I got 2 of the IV treatments in yesterday. My arm was pretty sore but that was expected. I took some ibuprofen and went on with my day.

Overall, everything was fine. My day was a little stressful and nerve-racking, but we're ok now! :]

Day 2:
How is ANYONE suppose to get better in a hospital if they can't get any sleep?? lol I mean really. People in all through the night checking oxygen levels and temperatures. Really people, I'm fine. I promise. I came into the hospital feeling fine and I'll leave that way too.

Chris has a fever so he won't be back today. :[ I appreciate his efforts on not getting me sick, but I'll still miss him.

The word is that I'll be out Wednesday afternoon. YAY! That means back to school on Thursday and Friday.

Today has been pretty mellow. Oh! But my arm doesn't really hurt anymore. It did when I used it a lot to pull my hair back and when I dried it after my shower, but in general, it doesn't hurt at all. That's more good news. :]

Lunch is here. The food here isn't bad. Yay Sutton's!



Sunday, November 16, 2008

Silver Lining and a Frustration

I like to think there is a silver lining to all situations. To mine at the moment? I get *2* weeks for Thanksgiving break, not just 1. :]

Soccer started today. While we may have had little (or no...) competition, I am glad to be BACK!

Ah, so I went to an Eagle Scout ceremony today for two guys, Alex and Kendall. Late into the reception, I had a panic attack. These things hit me when I think too much. I was hit with the reality that I was about to be admitted into the hospital again in 2 days. WHAT? No way. I was just running with my team this morning. There has got to be a mistake. Are we sure we have the right Andrea? Yep. No mistake.
On the car ride home from the ceremony (Chris drove me) I ranted a bit. First time I went into the hospital was because I kinda gave up on life and just didn't take care of myself. These last two times I have more trouble accepting... it's just very upsetting when it feels like I'm being *punished* for something I didn't do. I didn't do this to myself. I didn't give myself this disease. I have taken care of myself. But it's not good enough. It's just frustrating when even when I'm doing everything right, stuff still goes wrong.
Other than that, I'm growing more nervous by the day. Worry does nothing good for you, but I can't seem to calm down. Seriously, what am I so afraid of?! I honestly believe I'm more worried about the emotional stress than actual pain. There is a great deal of both, but I have a harder time handling emotional stress. And then the stress of making up a weeks worth of homework... and the stress of not being there to run with my team because I'm couped up in a hospital room. And the fact that people feel sorry for me!! I don't handle that well either! Don't pity me. That is the LAST thing I want. It makes me feel worse, actually. Empathy is fine, but support is better. Looking PAST the fact that I've got a PICC line in or an illness and seeing *ME*. Yes, I'm in a hospital getting antibiotics. No, I'm not those kids you see in the biology text book where I'm hooked up to 20 machines and passed out like I'm about to die. I'M STILL ME.

Oh there I go ranting again. That's just me being nervous... :/


Thursday, November 13, 2008

2 Quick Things!

1- All people who have a Gmail account can comment on this blog.
2- I was told to mention that not only do I know other CF patients, I also know a CAT who has been unofficially diagnosed with CF. Given, I'm no doctor, nor is my chemistry teacher (the dear parent of this kitty), but Mooch (the kitty) has the symptoms!

Crazy. I need to still keep the 3 foot distance from him, says my doctor. Too funny, in my opinion.

That's all.


Wednesday, November 12, 2008

Proof is Bliss

Ahh what a wonderful feeling knowing that all of your sickness truly ISN'T because of your lungs but your sinuses! They knew my sinuses were *horrible* but I was worried that there was something going on with my lungs yesterday. But after 45 minutes of the Vest last night (YES, 45 MINUTES!) I made my diagnoses that my lungs are clear, as usual. Hooray. :]

We announce the soccer teams tomorrow morning! The returning Varsity seniors (all 9 of us) made the posters this evening and will duct tape them to the big wall in the morning. I'm so thrilled. A few people will be very surprised tomorrow!!

So, a game against another local soccer team has been scheduled for Thursday. I am not ok with this. That means I either miss out on the first real game of the season or I play the field instead of being in the goal. I can't play goalie with a PICC line in! However, if I wrap it really well, I can play on the field. If I am out of the hospital by Thursday evening, which I should be, I will go play. Like I said, nothing will stop me!

Alright. I feel Chemistry calling me again. *sigh*


Monday, November 10, 2008

The Countdown

One week. One week from today, I'll have just gotten my PICC line in and starting up my two weeks. Today, I had a panic attack. Why? I don't know. I talked myself down. I've had a PICC line put in before. It's not that bad! I know exactly what's going to happen and what the procedure is. So why am I so scared? Not really sure, but for now, my nerves are calm. My Small Group prayed that they would stay calm! I sure hope so!

I'm working really hard right now to get well. Trying extra hard! I can't tell if it's working yet, but I'm sure it will help in the long run.

OH. Today! Soccer tryouts day 1. *sigh* It's so good to be back. I'm still not doing the distance running I used to do because I can't. Not until the antibiotics help. And yes, I'm playing again with a PICC line in. Last year, we played our rivals with it in: rough game. And I had a PICC line wrapped tightly to my arm. It was fantastic. I love overcoming obstacles like that!

I always find myself typing on the forum while doing treatment. I guess I'm more motivated right now because with the Vest, typing is about all I can do. And instead of sitting and contemplating my health, I talk it out here. It really helps.

I have no idea who even reads this thing. I got a good response on Facebook, which made me happy. Like I said, I feel the need to spread the word about CF because it's important to me and everyone can help. The pictures online of CF kids will upset anyone, but those of you who go to school with me: I don't look like that! And yet I'm a CF kid too.

Ain't life funny that way?


Sunday, November 9, 2008

Bah, Who Needs Sleep??

Obviously I don't. A dear friend had her 18th birthday party at her grandparents lakehouse last night. Let me just say that we were still up chatting at 5:30 the next morning. It was wonderful. We, all 7 of us, had a fun time gabbing about boys, school, and just life in general. The things you learn playing "I've Never...".....

Anyway, late that morning, after we had slept a few hours and had gotten back up, I ran out to my car where I had left my purse. Inside it was a pill bottle *FILLED* with my morning meds and some advil for my sinus headaches. It was odd. I mean, I always take a handful of pills each morning, and sometimes around friends, but this time is was different. Every person there knew there is something "wrong" medically with me, but that's not why it was different. Almost as if they had planned it out the night before, when I took my pills, 2 other people went and got their morning dosage and took it with me. Sure, I single-handedly take more than the two of them combined, but I wasn't alone. It was a nice feeling. A feeling long overdue.

So, over these fews posts someone may have gotten a glimpse into my life that may have been hidden from them before. I was not hiding it intentionally. For years, yes, I was. But can you blame me? I did not personally know a SINGLE PERSON with CF besides me until this past January. As far as I could tell, I was the lone-cystic in Shreveport. Sad, right? Yeah. It was. But I'm not alone, but at the same time I am. However, that is another post for another day.

The feeling of loneliness is a hard feeling to shake and is usually perpetual. Once you feel you are alone, you will continue to convince yourself that you are. Think of something about yourself that is a major part of you (your race, your religion, your gender, etc.). Now imagine you live in a world that you are the *only one* like that. People can sympathize that you're alone or that you go through things that no one else does, but they can't truly understand. Welcome to my world.

It's not so bad most of the time. I am extremely healthy in comparison. Of course, every CF case is different. My first hospitalization (after my young'un years) was in 7th grade. That was something the nurses just couldn't believe. I was told to be the "CF Poster Child." Great. Yeah. Sure. Ok. That's really how I want to be remembered. NO THANKS.

I am very healthy, even for 'normal' people. And really, if you learn to be compliant with medicines and the daily routine of different nebulizers and machines, it's not too hard to be a cystic. Compliance is the key.

I'll post more in depth in upcoming posts, I promise. More about my actual experiences and life. Heck, I'll even post a "Day in the Life" kinda thing. But right now, Chemistry is calling my name and it doesn't sound too happy with me... remember, I'm a 'normal' kid too!

Have a good one. :]


Saturday, November 8, 2008

Why am I blogging?

Good question. Partly for me and partly for anyone who happens to cross by my site. My main reason: I have a disease that many people have that not enough people know about. I honestly started this up with the unrealistic hope of half the world reading it and deciding "oh! Yeah! Let's help this cause!" Or at least be more educated about it. I'm literally dying for a cure. Ha, funny but not.
Cystic fibrosis. Most people I've talked to either have never heard of it or will say "hmm... I've heard the name..." like it's someone that goes to their church. If you look for it online, it might scare people. I know it did a few of my friends/family. I won't get into the nitty-gritty details of it now because I'm really not feeling up to it.

Ultimately, if all of my friends on Facebook read this blog, 9/10 of them wouldn't have known prior to reading it that I had some disease. I don't hide it (anymore) but I don't walk around school with a giant sandwich board that says "I HAVE CF. ASK ME ABOUT IT."

So why am I going semi-public about it now? Because to me, this is an important cause and I want more people to know about it. Millions of people know about Breast Cancer and now people and companies are working hard to raise money and support the search for a cure. Well, I'm ready to see purple-coated M&Ms in support of fighting for a cure for CF.

So I'm starting NOW in getting my story and my message out to gather up more support in finding a cure and making CF stand for Cure Found.


Intro blog

Well hi!

I blog off and on, here and there but I would like to be consistent from here on out. That's why I started over here.

Explanation of the title:
Isn't it true? Every life indeed has a story to tell. I got that from a Cystic Fibrosis forum off of Patti's signature. I loved it and thought it was the perfect title.

This isn't necessarily being written for other people, as some blogs are, but I don't mind if other people read it. Anything I post here is nothing I want to hide! Otherwise I wouldn't have posted it online!

That's all for the intro.