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

Monday, December 28, 2009

Ahh Mondays

It's Monday once again, but who cares?? I'm still on break! Life's good.

So I don't think I'm getting sick (*crosses fingers*). My GI junk is better. Who knows what that was, but I'm glad it's over. However, my cough has steadily gotten worse. Not really bad, but I can tell. It's more productive and wet, not that dry cough or the clearing of the throat that all CFers do. But that serious "lung" cough. It came to my attention, days after it should have, that my boyfriend's dad thinks he may have had a return of his walking pneumonia. WHAT?! Contagious or not, I don't think I need to be around it. I learned this after being there 3 days in a row. "This cough just won't go away!" he says. akjsdlakdf then why am I over here?! They are normally really good about remembering my "issues" but this blew me away. However, I think it may be more contributed to his smoking habits than pneumonia. Either way, I'm a little bit upset.

The Indy Bowl is today! Louisiana Tech is not playing this year, but I'm still going. Gig 'em Aggies!

I can hardly wait to get back to college-town and have the gym be open again so I can go running inside. It's very obvious how much running affects my health, but I cannot run outside. It just doesn't work. I have no idea how I did it for four years in the cold (and 14 in the heat!).

2009 is almost over!! I'll do a year's recap soon.


Saturday, December 26, 2009


A tradition that appeared unintentionally, and is still going strong: I forget enzymes on with Christmas breakfast.

It just happens! I do it every year and don't notice it until it's too late. However, I DID take them with Christmas lunch, which is very very important. I did not eat dinner this year, a twist on the normal routine. I still felt full. Well, kinda. I did feel full, but it was a "bad" full. That full where you can eat, but your body is going to h.ate you for it later. Either way, my body is mad at me today for whatever reason. Something's wrong. It seems to be way worse than just missing breakfast enzymes. Something bigger. I'm hoping I'm wrong and something just didn't agree with me, because I held Carter for over an hour yesterday and I really can't be "sick" sick (as opposed to "CF" sick). Aside from urgent bathroom runs (sparing you the details, you're welcome), I feel fine. My GI gurgles much more loudly than usual, but no other serious symptoms. I figured that if I have a stomach bug, I'd be throwing up too. I have a lot planned these next few days! I can't be "sick" sick!!! *sigh*

I usually don't feel well around the holidays (change of patterns, visitors, change in eating habits, large portions, less sleep, etc.). But this... ugh this is annoying.

We'll see what happens with all this junk.
Merry Post-Christmas!

Thursday, December 24, 2009

"No Excuses!"

And yet... still not running. And my running buddy just left for Illinois. *sigh*. The cold outside takes my feeble motivation and stomps it into the ground. And the stationary bike was put up in the closet to make room for family. So I sit.

I've noticed a change in my level of coughing, and so has my mom. THAT'S NOT GOOD because now she's worried I'm either getting sick or CF sick and I have a Dr. appt in January. Fantastic. I'll be up and running starting around Jan 4 (since I'll be back in college-town) but it's going to be another tough start from the beginning.

On a lighter note, it's Christmas Eve! Today will be a good day with going to the grandparents' for the traditional pizza lunch and then to a family friends' house where every year they host the after-dinner party. The dinner was at another family friends' house, but they've had a busy year with 3 weddings and sick parents, so no annual Christmas Eve chili dinner. So the after-party people this year are picking up the slack and serving dinner too. Life's pretty great around here around this time of year.

So my dog is strange sometimes. In her crate, she has a water bowl that is attached to the metal door. We fill it every night. We also always give her her pink blanket (that her birth owner gave her as a parting gift). It seems by every morning, the pink blanket is put in the water. And not usually just a corning, but stuffed in there. And this morning, I think she tried to take a bath in it, and was pretty successful. One side of her face, her belly, her tail, and all four paws were sopping wet. And as soon as I let her out of her crate, she heads for my bed. *sigh*

Merry Christmas to all, and to all a great morning. :]


Sunday, December 20, 2009

Rough Running Day

Ouch. Today was a very difficult day for running for me. I went out with Alissa to go run, but I didn't make it very far. Bad bad bad...

I think it was a combination of a few things:
1- I had NO concept of how far a mile was on this track. No markings or anything.
2- It's cold outside! More importantly, it's OUTSIDE!
3- Talking/laughing while running
4- Running with someone who is way better at running. We probably started off faster than I normally do.
5- Hills.

All of these things put together resulted in me coughing until I felt like keeling over and me saying "Alissa, I HAVE to sit down." My lungs felt like they were getting punched. My legs, however, felt fine. Ugh. If it's not one thing, it's another, right?

But, on the plus side, that difficult run produced a lot of mucus. Those really good coughs got plenty up and out, believe me. So while I was disappointed with my short distance, the ultimate mission was still accomplished, so I guess it evens out.

The rest of the day was pretty good though! I saw New Moon with my Dad, and it was good even with the movie stopping at a very tense part. Stopping = the film stops, the lights come on, and the screen moves back to the "pre-movie" position. This was happening right after Jacob cuts his hair and says, "This is me keeping that promise Bella. Now go home." As he turns to walk away, the movie cuts. Classic Dad, he says loudly in the theater, "Well that seems like an odd way to end the movie." The lady 2 rows in front of us laughs even louder. Oh Dad.

This evening was pretty epic, I must say. It was the Christmas scavenger hunt with my friends from high school!! We all met up to eat a cheap buffet dinner (we are broke college kids after all) and then go to our starting/ending house, form teams, get the list, and GO GO GOOOOO!!!! The list included things like: the Black Santa, snow, kissing someone under the mistletoe, caroling to someone, employee in an elf hat, ghetto Christmas decorations, Christmas underwear, etc. We had to take pictures of us with this stuff (and a video of the caroling) and meet back at the house by 9:30. It was a crazy and fun night!

And now, as I do my last dose of TOBI for this 28 days on (and smile!), I say goodnight!


Saturday, December 19, 2009

Perfect Timing!

I had been thinking all morning about how much I was dreading running in my neighborhood, or even outside at all. Running outside, in the cold, on hills, by myself, with shin splints is not my ideal running conditions. I was beginning to get discouraged about running over break, and was about to surrender and only use the stationary bike. But, you know how God likes to step in an take a seemingly hopeless situation and make it all work out? TA-DA!! I *just* got a text message from a dear friend of mine, Alissa, who enjoys running (well, at least it looks that way since she runs all the time!). We have played soccer together for many years. She just text me asking if we could have running dates while we were both in from college. YES PLEASE!!! So Alissa, I know you occasionally creep on my blog, and if you are reading this: THANK YOU!!

I think today, unless we work out a running date, I'm sticking to the stationary bike today to give my legs one more day of healing.

Oh look! Another text. Running date set for tomorrow. :] Love her!


Friday, December 18, 2009

Shin Splints: You win... for now

Ok. Today I'm taking a break. My shins are so incredibly painful. Walking across campus and back felt like I was having my leg broken with every step. Plus my calves are still in constant "cramp" mode. I'm going to ice my legs when I get home (HOME home!) and run again on Saturday, Sunday at the latest. We have a stationary bike at the house, so I'll do some of that tomorrow if I still can't run. Hopefully it won't hurt quite so much. Besides, my mom is always a huge help when my legs are in pain, so going home for Christmas break will really help me out.

Speaking of, I need to pack!! I haven't even started packing up the apartment, and the boyfriend will be here soon to load up Dora (my car) for me! I haven't started yet because I'm waiting for a friend, a marine, to call me back on if he can help me (or get someone else) move our Sigma Kappa letters inside over break. They are WAY too heavy for me to move.

Oh, and my biology test today? Piece of cake.


Thursday, December 17, 2009

Three days strong

I am so proud of myself. I can't even describe it. I don't necessarily feel "better" yet, but I know I'm doing good things for myself by running every day. In between two classes (tests) I have in the same building, a gym to be exact, I took the initiative to go running in their indoor track. How convenient! I ran roughly the same time as yesterday, which I'm proud of. Today's run was really hard, so a consistent time is good. My legs are KI.LLING me and my shin splints decided to return. I had to talk myself through the run, but I got it done. I'm already making arrangements for running over break (which starts tomorrow!) but it will be done outside! This cold air and hills are difficult! But I will do the best I possibly can.

Trying to stay strong!

Wednesday, December 16, 2009


I ran a 10:14 mile today! That's a whole minute faster than yesterday!! That was all I could do, but a faster mile > a longer run, at least for now. I'm so proud of myself!!! Going running again tomorrow before lunch, instead of swimming later.

My legs HATE me right now though. They feel like they are in constant "cramp" mode but I'm pushing through it.



Tuesday, December 15, 2009

It's definitely time for an update!

Hey friends, family, fibros, cystas, and strangers-

Here are a few things I have to update on:
1- Both of my brothers are officially CF tested and CF free. Neither are carriers.
2-Mom told me my other gene... i'm a DeltaF508 and 1078 Deletion T.
3- I went swimming again today, but didn't do much swimming because....
4- My legs are tired from the 1.5 mile I ran today! It was for class, but running is running!
5- I ran my mile in 11:15 (with walking only one lap) and my 1.5 mile in 16:28.

I'm really really proud of myself. I wanted to keep roughly an 11 min/mile pace and I did! I wanted to go running on Monday but the boyfriend went without me because he had evening plans. I was in class. Lame. I'll be running with them tomorrow and I might skip the swimming and go running after class on Tuesdays and Thursdays in the inside gym where I have class instead. This might work out! I really am ready to be back in shape. My VO2 max rating is "Poor". I learned that after my run today. *shrugs* Got to start somewhere!

I think my prof was impressed that I was running so successfully. She asked me afterwards how I felt, and I was great! A little salty, but great. :]

WHOA!!! Listen to me?? It almost sounds like... no.. can't be... that I like running?!! Maybe not "like" but it's up from "dislike with a burning passion from deep within."

We'll see where it goes from there, but I'm kinda excited. If I start enjoying running, my health might just make a leap in the right direction even faster. I kinda hope so. :]

Almost time for Christmas break! Only a few more days!


Friday, December 11, 2009


It's Friday folks and that means the weekend is starting!! I haven't been feeling too great today, but hopefully that will pass in the next hour or so. I have a party tonight!! It's a gi.rls-PJ-game night-party at one of my sorority sister's apartment. It's going to be fun! I can't wait. Hopefully I'll be feeling at the top of my game!

I went swimming on Tuesday! I'm pretty proud of myself. I'm also going tomorrow morning (ugh) and hopefully will start working out with the boyfriend and his friends regularly. They go to the gym MWF and swimming TR. Whew. 5 days of workout, but it's what I need! So, swimming. I started swimming a little bit when I had to quit suddenly thanks to that chlorine burn. And not the usual burn that last a few seconds. Oh no. This was chlorine that decided to explore every nook and cranny of my sinuses. It BURNED. So I stopped swimming for a bit and ran in the water, which is way harder than it sounds. While the guys swam laps, I ran the same distance trying to beat them. In the end, I tried swimming again and it wasn't so bad. Hopefully it will work out.

My gym days will be spent running and either doing weights or machines or both. And then abs. I would love to have the toned body I had last year, and all during my high school soccer seasons. I've lost a significant amount of muscle, and I h.ate that. I also h.ate my lost of lung capacity. I was right about these kines classes getting me motivated. It's just what I needed!

Once I get my routine set and I'm actually sticking to it, I'll update here again on it.


Monday, December 7, 2009

Winter Quarter; Day 4

This is the fourth day of 8am classes.... and I love it. No, I haven't lost my mind. I don't love waking up early, but I love being done early! Wednesdays and Fridays, I'm done by 9:15am. How awesome is that??! I go back to the apartment, clean, do homework, nap, run, anything! Tuesday/Thursday I'm done by noon and Mondays I have a noon-3 lab. I love being a "stay-at-home" mom (without the mom part). It's fantastic. I'm surprisingly productive.

I think my two Kinesiology classes will be the key for me to get back into running. With both classes pinpointing the importance of changing "negative" behaviour (mine is not running) and giving steps to overcoming the behaviour, I really do believe that I can do it. I don't want to run but I want to feel better. I'm also talking with the head coach of a local girls high school soccer team to see if I can help out there too. I think playing/coaching soccer again will get me running more.

I'm also babysitting now again! I hadn't done much of it since going to college, but my professor's kids (two boys, of course) need a babysitter a lot. Their previous babysitter has class when my prof needs her, so I took the opportunity to make some money and spend time with kids, which I love. It probably doesn't hurt that these kids love me!

When I first offered to babysit, she told me that her kids were just getting over sinus infections and colds. My first thought: "CRAP!!!!" My greatest weakness! Sinus infections, sigh. So I explained to my professor that I had CF. Her eyes widened as I gave a brief reason why I was telling her (not only because of her kids but also because it was an activities class, and anyone with "disabilities" were to let her know). I told her that it won't restrict my activity level in the class, but that she might want to be aware. She asked a few basic questions: when were you diagnosed, how old are you, do you still do breathing treatments, have you had a transplant, etc. Turns out, her best friend from high school has a daughter with CF and goes to my prof with questions. Now those questions are going to be relayed to me! Unfortunately, the daughter is 12 and has never been in good health. They are contemplating transplants right now. I think it was encouraging to see a 19 year old girl that is a high-functioning CF patient doing well in all areas of life. I would have stayed longer to chat, but I had another class starting. Since this is the same professor I babysit for, I'm sure we'll chat more.

On a side note, I find it amusing that non-CF people have this notion in their heads that only "sick" CF patients do breathing treatments. They always seem shocked when I tell them I have to too. It's not only a medicine we use to get well, but a medicine to STAY well.

As for the sinus infected children, they cough like they're dying (and sometimes on me...) but so far I'm doing pretty well. Really tired yesterday, but that might have been because of Saturday and Saturday night. I was out until about 2:30am, but it was well worth it. :]
Wow! It's almost 11 and I've been to class, cooked food (and ate it), done treatment, showered, prepared for my lab this afternoon, and wrote a blog post. See what I mean about being productive?!


Tuesday, December 1, 2009

Back "home"

Back in my college town, nothing too exciting has happened. I was going to go to a basketball game, but that got all messed up, so I didn't. I'm really tired and will be going to be in the next 2 hours or so. *yawn* Good thing too, because I have 8AM CLASSES EVERY MORNING. I must have been suicidal when I planned that.

Today has not been a good day overall. It started when I woke up late and has kinda gone downhill. That's probably part of the reason I'm tired. I'm just drained from all the negativity of my day. Tomorrow can only be better!

I'm going to miss being tackled by my puppy early in the morning tomorrow. Even though she always woke me up earlier than I wanted, I loved every time she did it. And especially when I fell back asleep and woke up with her curled where my knees bend, fast asleep with me. That's something to wake up to. :]


Thursday, November 26, 2009

To sum up my Thanksgiving afternoon....

Turkey Day!

Happy Thanksgiving!! Last year, I had a PICC line on Thanksgiving so I didn't eat much at all. The antibiotics just made me feel full and not so great. But this year, I'm PICC free and ready to shovel food!! This year, Thanksgiving Lunch will be eaten with my parents, the middle brother, his wife, new baby Carter!, and my grandmother. My aunt/uncle and the boyfriend will be joining later for cards and games. We may have other family members drop by, but these are the people we know for sure are coming.

Oh, I guess I should mention that my puppy and my brother's puppy are coming over to play with each other. And they're not really little puppies anymore (Coach is over a year and McKenzy is almost a year) but they will always be puppies to me. :]

So I've been withholding information from the blog for people's privacy, but I'm ready to shout it out: I'M GOING TO BE AN AUNT AGAIN!!! My other brother's wife is now pregnant (only a month behind her sister in the pregnancy!) and they told our family this past Saturday. Obviously, I'm really excited. Being an aunt is the fun part. Except when you have to fight "grandma" for baby time. Like yesterday! I was holding Carter and my mom so desperately wanted to hold him!! But he was content and sleeping and I knew if we moved him, he would cry. I didn't want that, so I held him until he actually needed to have his warm clothes on before they left. My argument was that she will have plenty more time to spend with him than me, since I'm about to go back to college. Let's see how many times I can pull that card!

The boyfriend came back yesterday from visiting his sister. It was really great to see him. I really did miss him! He dropped by my house for a minute (which is all I asked for) before going all the way home so I could see him. I ended up going to his house later, which was a lot of fun. I hadn't seen his family in a while since I don't go over there as often anymore. It was nice to see them all again.

Tomorrow is Black Friday, the craziest shopping day of the year. What do I do? Hide. I don't leave my house. Tomorrow will be my day to sit and study for the Chem 100 credit exam. I'll probably go out on Saturday to do some Christmas shopping, but not Friday.... *shivers*

Lunch is an hour and a half away!!! Time to get ready for the day. :]

Don't forget what you're thankful for!!


Saturday, November 21, 2009

Quarter Break

My college is on the quarter system so instead of 2 semesters, we have 4 quarters: Fall, Winter, Spring, Summer. We only go to school during Fall, Winter, and Spring, but a select few classes are offered during the summer on an airforce base in my city, and maybe a few on the main campus. Anyway, so I finished finals, with good grades!, and I'm now on break until December.

Obviously, I've been spending some time with Carter, but not too muc
h because I don't want to bother my brother/sis-in-law. Always having people coming and going gets hectic and I don't want to cause anymore stress. But I do enjoy seeing him when I can.

Today was a wedding in my family! My uncle got married today to his long-term g.irlfriend. It was really sweet. I read the Apache Wedding Blessing as part of the ceremony at their request. My family is *CRAZY* when we get together. The good crazy. It was good to see some of the extended family again.

So overall, life's pretty great. I'm really enjoying my break before going to back to school with 8am classes every day. Ugh. That's gonna kill me.

Here's just another picture of Carter because I love him and I like to have pictures on my posts more often than not. This is his daddy holding that sweet, sweet child.
-Aunt Annie

Tuesday, November 17, 2009

Auntie Annie

I'm an aunt!! My nephew was born yesterday. Quick update so I can get back to studying for finals. (grrrr)

Carter Elijah Ray
8lbs 2 oz.
20.5 in long
a head full of black hair
born Nov. 16, 2009 at 10:36pm.

He was a "chore" to birth seeing as my sis-in-law was in labour for 16 hours.....

I drove in from college for a day-trip to see him. He's beautiful, yall. He's beautiful. I held him for hours....

Now back to studying. 2 finals tomorrow. ugh.

-Auntie Annie

Saturday, November 14, 2009

Finals week

Next week is the final week of my first quarter of college. Sweet! I have a quiz Tuesday, 2 finals on Wednesday, and an in-class essay on Thursday. Then I'm home!

On more excited news, Monday is when my nephew is supposed to be born!!!

That's all for now. Just felt like I should post something. Nothing blog-worthy has happened lately.


Saturday, November 7, 2009


So I realized today that the Vest works better if you take deep breaths. Wow. It seems like it would be common sense, but I never figured it out until now... 8 years after I got it. Go figure.

Today was a *fantastic* day. Let me tell you what happened:
I was up at 6 (this was not the good part) and leaving town by 6:30 to drive 35 miles to another city to do a Memory Walk to support Alzheimer's research. The walk didn't start until 9, but I went early to help set up. I went with my sorority because Alzheimer's research is one of our major philanthropies. After we left and made it back to college-town, I chilled in the apartment for about 45 minutes (roommate hadn't woken up until after I got back). Then I left to go to my friend Stephanie's apartment. From there, we drove to the lower fields and supported the seniors in our sorority in the Flag Football Tournament, hosted by another sorority on campus. We were out there for several hours, but THEY WON!! 1st place!

From there, Stephanie and I decided to just drive. Didn't matter where. It was such a pretty day and we didn't want to be cooped up inside. So we got gas and took off, singing songs and chatting it up. We ended up going to a nearby lake. It was so beautiful and calm.
We stayed there.... really not sure. We lost track of time skipping rocks and talking. We went back home and she cooked dinner (chicken, rice, and broccoli) with some other friends. It was so much fun.

What a life!!


(p.s.- if you're not feeling well, don't do the serious breathing thing with the Vest. I just discovered it makes you feel 10000x worse.)

Thursday, November 5, 2009

Remember, remember the fifth of November...

The title of this post has nothing to do with the actual post, but I couldn't think of a good title.

Where have the days gone?! I went home this past weekend to be with my family to celebrate my birthday (which was fun!) and then they left me to go watch a football game 4 hours away. Oh well. I enjoyed time to myself, with my puppy!, relaxed a bit, and worked on a research paper a bit. Saturday was Halloween, but since I was home alone I didn't want to answer the door often on an evening known for being creepy. So I literally took the doorbell off of the front of my house and put up a sign saying I had no candy. I wasn't disturbed. Well, not until some chick in a red dress knocks on the side door....

While that may sound creepy, it's not. She's usually harmless. :] I called my little "sister" to come spend the night with me because I was tired of being alone on Halloween. It was starting to get to me. So she came from her junior homecoming to stay with me (and return my dress!). We had a fun little gi.rls night in.

Then it was back to the grind with school. Two nights this week, I have been up until 3am working on the same research paper. I turned it in today, actually quite satisfied with it. We'll see how I do.

Other than that, I feel like I haven't really gotten anything done, but I have. Little things, that will all add up one day.

The quarter is coming to a close!!! Yay! I have almost finished my first quarter in college. How crazy is that? Oh, and have I mentioned that I *love* college? Because I do.

That's all for now!

Thursday, October 29, 2009

Birthdays and Pumpkin Guts

Today is my 19th birthday!! Yay! Finally!

Yesterday, I carved a pumpkin with the boyfriend. My job: gut it. His job: cut it.

The final product:


Sunday, October 25, 2009

Sinuses Vs. Annie

Guess who's winning...

They are kil.ling me right now! Today was initiation and I had a headache the whole time. :[ It was still wonderful though.

Oh, and last night... ooooh last night. 3 or 4 times between 2-4am, I got up and ran to the bathroom because I thought I was going to throw up. Every time I prayed to God to not let me throw up because I h.ate it and I couldn't be sick for initiation. I had to be there. Eventually I drifted back to sleep until I few minutes before my alarm went off so I got up anyway.

My mom brought albuterol!!! About to do a treatment now. I don't feel like I need it (not coughing a bunch, not short of breath) but I know I need it for the long-term affects.

One of Sigma Kappa's newest Actives. :]

Saturday, October 24, 2009

And now I'm sick...

This is just fantastic. I'm sick now, and it's not even what the boyfriend has. I just picked up something completely different at the same time. klasdjalkxf!!!!!!!!!!!!

It's not a really bad sick, but it came at the wrong time. I woke up the morning with a raw throat and a stopped up nose. I've been coughing like crazy for the past few days but blamed it not on being sick but on my 60% lung functions. Unfortunately, it came right as I ran out of albuterol. Yep. I'm out. Isn't that great?? Thursday night I realized I only had 3 vials left. I used one for that night, Friday morning, and then Saturday morning, trying to stretch it out. My mom is coming to town on Sunday and I've requested multiple times for her to bring me some, so I'm pretty sure she will. If we have some at home.

Also, I have initiation into my sorority tomorrow (the reason my mom, my aunt, and my grandmother are driving in) which is a whole day event and I *cannot* be sick. Grrr!!!!!!


Friday, October 23, 2009

He's still sick..

So the boyfriend went to the doctor where they told him that he did NOT have the swine flu (yay!) but he has a bacterial infection of the lung (noo!!!). So, he's still in quarantine from me. And my birthday is in less than a week. That will be the first day I will see him, but I don't even get a happy birthday kiss!! :[ Darn that bacteria.

Today I slammed my left middle finger in a very heavy door. It really hurts, even 5 hours later.

Today was Sigma Kappa new member retreat. All us new gir.ls hung out together with all the actives. It was a TON of fun. I love them so much.

No more Oct. 23, 2009 posts.


Boyfriend + Swine flu =.....

...me freaking out.

The boyfriend woke up this morning and called me. We had been trying to make plans to hang out after my 11am test. He called and said, "I'm not going to be able to see you. I'm really sick."
Symptoms listed online for swine flu:"If you or a member of your family has a fever or high temperature (over 38°C/100.4°F) and two or more of the following symptoms, you may have swine flu:
  • unusual tiredness,
  • headache,
  • runny nose,
  • sore throat,
  • shortness of breath or cough,
  • loss of appetite,
  • aching muscles,
  • diarrhoea or vomiting."

Boyfriend symptoms: cough, chest pain, chills, fever, achy body, feels like he's going to throw up.

I'm thinking he's right in his guess of the swine flu. He's not one to admit that he's sick even when he is, so the fact that he called me to tell me he was sick and is going straight home and to the doctor is HUGE. "This one has knocked me to my knees" he said.

BLESSING: we were both super busy yesterday and therefore didn't get to see each other at all. I'm not super worried I have it too.

The part that bothers me the most is when he's sick, my natural "motherly" instinct kicks in and all I want to do is help him get better. I want to bring him soup, change the temperature when he needs it, etc. Nurse him back to health, but I can't. I have to stay away from him when he needs help the most.


I feel kinda selfish staying away. I UNDERSTAND it's for my health and that he doesn't find it selfish because he wants me to be well, blah blah blah. Doesn't change the fact that he's sick and I can do anything about it.

There is no confirmed diagnosis yet, but he's sick with SOMETHING bad and it sounds like the swine flu. Awesome. Poor boyfriend. :[


Tuesday, October 20, 2009

Dr.'s Appt

Not in much of a talking/typing/blogging mood, but I said I would post after my next doctor's appointment with updates:

FEV1 is a little low, but nothing to be alarmed with yet. ~64% of predicted.
The peak flow meter was high though! 505
And my weight was up ~4 1/2 pounds. Almost a third of the way to gaining the freshman 15.

They didn't talk about my PFT results too much because they were excited about the weight and my lower scores aren't yet a red flag. My reasons for the lower FEV1 are: less exercise and exposed to more smoke on a weekly basis.

I've had a really really long day, so hitting the sack pretty soon here.

Night !

Thursday, October 15, 2009

Hope from a glowing cat

Reneau, my lab mom from when I worked in a research lab, visited New Orleans the last few days and posted this on her facebook:

"this is MR. GREEN GENES.....lsuhsc-new orleans scientists cloned the green fluorescent protein i use for my cells into the genes of the cat!!!! this type of knockout gene therapy is being used to help discover treatments for cystic fibrosis and diabetes!!"

Reassurance that people are working to help us. And are making progress.


Wednesday, October 14, 2009

The gym, and such.

I was supposed to have an Intramurals soccer game today, but our competition didn't show. That frustrated me because I was really pumped to play soccer. I've missed it so much! So, already dressed for physical activity, I decided to go to the gym. *huge sigh*

Needless to say, I still don't like running. Sorry, but I don't. But I still went to the gym. On my way to the track, I glance into our blue gym and see some guy in the very back kicking a soccer ball against the wall. I shuffled through 2 different basketball games to get to this guy. I called him over. "Hey, do you want someone to just kick the ball around with?" "No." Wow. Shot down. "No, I mean, my game was canceled and I just really want to play." He half-smiled and nodded and gave me the ball. "Your game cancel?" That's when I understood he was a foreign exchange student and didn't quite understand me, not a really rude kid. He looked like he was from the India area, but it was hard to tell. We spoke very little, but ran drills (ugh) that involved long sprints (UGH!!). After a few minutes of that, I was tired so I sat and stretched (that's what all the good soccer players do when they don't want to admit they're tired. "I just need to stretch, hold on.") After that, we just repeatedly kicked the ball at the gym back wall for about 10 minutes. He finally said "I think I'm done." I shook his hand, said it was nice to meet him, and watched him walk out.

I have no idea what is name was or where we was from. We spoke very little, but communicated very well. It's crazy how sports can connect people from across the globe together. After that, I called the boyfriend to see if he wanted to work out, but he was going later with a friend. So it was just me... and the track. *siiiiiiiiiiiiiiiigh*

I was already a little tired from playing soccer, but I ran. I am not sure how many laps around this track is a mile (I've heard 10, I've heard 16) but I ran 12 in 7 minutes (which makes me think it's 16...). I sat on the track afterwards and coughed so much and so loud, I had the rest of the gym staring at me (it's a raised track above the part of the gym with all the weights and machines). I'm pretty sure everyone thought I was about to keel over.

I can't run very far yet, but I'm trying. I am. I pushed myself today, and that makes me angry that I can only run that far. I'll keep running...

Oh, and just as a side note, I was so zoned out from running and walking back to my apartment that I tried to open my apartment door by using the clicker that unlocks my car. *sigh*


Tuesday, October 13, 2009

Win-Win situation

Today, I walked into a hair salon to get my (really long) hair chopped off. "I'd like it gone, please." The lady washes my hair, wraps it in a towel, and sits me down in her hair-cutting chair. She combs it out, thinks for a minute, and asks me a question I wasn't expecting: "Do you want to donate to Locks of Love?" I reply with a question of my own: "How short would that make my hair?" She points to my shoulder. "Around here." "Cut it."

So today, I donated 10 inches of my long, brown hair so some child will have a wig. The nice lady evened out what was left of my hair after exclaiming "Wow! You still have a lot of hair left!" *HUGE sigh of relief*

I'll be honest, that moment when she was adjusting the ponytail to the right length, right before she cut it, I got nervous. "What am I going to look like?" "This is totally outside of my comfort zone!" "What if I look funny?!" Then, once she started cutting it and it was a no-going-back situation, my thoughts cleared and I realized that the kids who are getting my hair, the kids who go through Chemo, are asking the same questions and saying the same things. "What am I going to look like? "This is totally outside of my comfort zone!" "What if I look funny?!" Then I knew I had done the right thing, and whether I loved my hair or hat.ed it with a passion, I helped someone else.

Turns out I *LOVE* my hair. So we both win. :]


From a few inches longer than this....

......to this!! 11+ inches cut off!

Monday, October 12, 2009

Article day

This was a great, quick article. The sinus infection part made me laugh; me with chronic sinusitis. And the percentage of people who don't stay home when they're sick makes me FEEL sick.

5 Reasons Why It's a Good Idea to Call in Sick

Do you dread calling in sick? Whether it's the fear of a judgmental boss or just concerns about missing out on important happenings, health experts want to put you at ease. There are times when making the call is a must. Confused about whether staying home is a good idea? Here are five signs that a sick day is in order...

According to a recent Glamour.com poll, only 21 percent of readers say they make a point to stay home when they're sick. The rest of you do sometimes or not at all.

Guys! The world will not end if you stay home and a.) rest and recover so you can get well again, and b.) prevent the spread of your germs to others.

But, I know it can be confusing about whether a sick day is in order--especially at 6 a.m. Here are five signs, from the experts at WebMD, that you need to make the call to your boss and head back to bed:

1. If you wake up feel pretty icky with a sore throat and the sniffles (which weren't there yesterday). Health experts say that the first few hours/days of a virus tend to be the most contagious, so spare your co-workers your germs and keep your sneezy self at home until the following day.

2. If you're taking medications that may (even slightly) impair your ability to do a good job. Whether it's a prescription medication or just over-the-counter cold meds that makes you feel like a space cadet, if the medicine you're taking is impairing you in any way, it's best to stay home.

3. If you have a bad sinus infection. Experts say that sinus infections can cause yellow or green nasal discharge, jaw pain, facial pain, and headaches--all of which are a major blow to concentration. Your best bet? Stay home and use your neti pot, and maybe venture out, but only to see your doctor.

4. If you have pink eye. The majority of "pink eye" is viral and clears up on its own in about 24 to 48 hours. Other cases are bacterial pink eye, and you need antibiotic eye drops from your doc. Both, however, are extremely contagious, so unless you want dirty looks from your office mates, better stay home!

5. Bad back pain. You may feel like a wimp calling in sick because your back hurts, but don't! Experts say sitting at a desk all day can actually aggravate your back and make the pain worse. Instead, after a mega back spasm, spend the day at home taking it easy.

Do you abide by these "rules"? Or do you tend to dread calling in sick?


Friday, October 9, 2009

A Concert Epiphany

I went and listened to the Cypress String Quartet yesterday when they visited my college. If you ever get the chance to hear them, do it. They are fantastic. That's not the point of this entry though. While I was listening to their concert, I did a bit of thinking too. Music does that too me. I contemplate. So as I'm sitting there, thinking about nothing in particular, I was hit with something big for me: I get to listen to this beautiful music. (Deep, right?) I started thinking of all the great things I get to experience in life: this music, soccer, friends/family, my puppy, sorority life, college, ETC.! Then I tried listing things I didn't get to do because CF held me back: very few soccer games, a few classes (OH DARN....), a birthday party here and there, Thanksgiving dinner one year...

When comparing the lists, I realized my life is not as affected by CF as I like to imagine it is during my pity parties. Like the reaction when I told one of my friends: "Oh no! I knew a girl who had that. She almost lived through her second lung transplant... she was 17 and a week from graduating high school..." Newsflash Andrea- that isn't you. At all. You're a few weeks away from being 19, in college, and are quite healthy!

This recently epiphany, the looming doctor's visit on Oct. 20, and a recent desire to work out have contributed to my recent good health. And I'm excited to announce that it should stay that way. I'm running, working out, piggin' out, sleeping lots (usually), and am overall pretty happy about life and the stuff that's in it. And a positive attitude is a large part of our overall health!! And it doesn't hurt that today is Friday.

-Andrea (Annie)

Wednesday, October 7, 2009

We can get away with mur.der....

So really, this probably shouldn't be funny, but I literally "LOL"ed, if you will.

From this article, came this quote: "A second man, cystic fibrosis sufferer Brian Shivers, 44, from Magherafelt, Co Derry, has also been charged with the killi.ngs. He was granted bail because of his condition."

I'm sorry? What was that last line? "granted bail because of his condition." BECAUSE the man has CF, he doesn't spend the rest of his life in jail (probably like his accomplice will) because of CF. Let's just make a list here of the good things about CF:
  • most of us are encouraged to eat lots so we can gain weight
  • some people get to skip out on gym classes in middle and high school (not me though)
  • we can get away with mu.rder!

How crazy.

Monday, October 5, 2009

Nasal Vaccines

I heard a rumor awhile back that if someone gets the Nasal Vaccines for the flu/swine flu, that I (as a CF patient) cannot come in contact with them for ~2 weeks due to a risk of getting to flu. I know I'm not "allowed" to get the Nasal Vaccines myself, but I can't find evidence of the risk of getting it from someone else.

This is the best I've found so far:
"Can people receiving the nasal-spray flu vaccine LAIV (FluMist®) pass the vaccine viruses to others?

In clinical studies, transmission of vaccine viruses to close contacts has occurred only rarely. The current estimated risk of getting infected with vaccine virus after close contact with a person vaccinated with the nasal-spray flu vaccine is low (0.6%-2.4%). Because the viruses are weakened, infection is unlikely to result in influenza illness symptoms since the vaccine viruses have not been shown to mutate into typical or naturally occurring influenza viruses."


Maybe Ronnie or CG can help me out on this?

Needless to say, I've gotten the regular flu shot and will be getting the H1N1 shot ASAP. But I'm just worried about everyone else putting me at a higher risk than I should be at.


Tuesday, September 29, 2009

Don't make me laugh... my abs hurt...

My facebook status yesterday was:

isn't it funny how a mile doesn't feel like a mile when you're running with a friend talking about the good ole days?

God answers prayers, my friends. As of late, I've been struggling with the fact that this great athlete (me) now can't walk up a flight of stairs without getting winded. That dramatic drop in breathing ability happened over just a few short months and took me by surprise. I ignored it. I told myself I was still the great athlete that I've always been. Occasionally, reality would hit me and I would cry. I have pride issues in some areas of my life, and this one was going to shorten my life if I didn't get a hold of it. The boyfriend would beg me to go workout with him and a friend of his, but I would always turn him down. "I can't. And I can't handle the fact that I can't. So I won't."

The other day I knew enough was enough. So I got the number of the oh-so-famous Ronnie Sharpe (see his RunSickboyRun blog here). Ronnie, to sum up, is a guy with CF who took control of his life by lots of exercise and discipline. I knew that if anyone could help me, he could. Even though I got his voicemail, just calling helped me because by calling him, I knew I actually wanted to help myself. So I did.

Last night I went to the campus gym with the boyfriend and his friend. Now, I really really really don't like running. But I knew it was the best thing. So I walk up the stairs to the indoor track and right as I'm about to run.... I hear a familiar voice. "Hey Annie!" Already on the track is a who I have known literally my entire life and have played soccer with her almost my entire soccer career. We started together on my mom's soccer team in the 4-year-old's league and ended up crying together when we lost in playoffs during her senior year (my junior year) of high school soccer. So seeing her on the track when I got there and her asking if I wanted to run with her, I knew God had answered my prayers.

As much as I don't like running, multiply that by 10 and that's how much I don't like running by myself. We took a walking lap around the track to stretch out my legs and then we ran. How far? Not sure. I do know it was over a mile though. After she left, I did sprints and other stuff. Then I did leg, arm, and ab workouts with the boyfriend and his friend. It felt really good. :]

Thanks to all... the boyfriend, the friend on the track, and also to you Ronnie.


Sunday, September 27, 2009

TOBI did WHAT?!??!

Hear ye! Hear ye! A few weeks ago TOBI did something new that caught my attention quicker than words can describe! Read my story!

It was a quiet day in the apartment. My roommate was gone and I was enjoying some down-time at the computer while doing treatment, a common sight. I was talking online to my not-actually-related sister when something surprising happened: the fire alarm for my apartment complex started going off. I calmly told my "sister" I would be right back, grabbed my keys, put on some shoes, turned off my machine, and walked outside. To my surprise, no one else was exiting their apartments. Nor could I hear any other fire alarms. Only mine. I go back inside and the fire alarm ceased within seconds. I then understand: TOBI set off the fire alarm in my apartment. It was the only explanation. I told my "sister" and of course she was amused. Then a second thought hit me: that means police and the fire department are on their way. I walked out of my apartment on the street side and a cop was leaning over the railing with 2 cop cars behind him. "Did your fire alarm go off?" "Yes sir..." "Well? What's the problem?" "Umm.. let me see if I can explain this. [fidgets] I have to do this medicine... it makes a thick mist and it somehow set it off..." [in his radio] "False alarm. Medicine"

Thinking back later, I'm surprised he didn't call a drug raid. "Medicine" that makes a "mist." Riiiiiight. It was code for "weed" obviously... haha. I asked the cop what I was supposed to do because I couldn't NOT do TOBI! He gave me the phone number and told me to call if it ever happened again so they wouldn't come out.

I called my parents after that. My mom laughed REALLY loudly when I told her the story. My nurse practitioner was amused too. As was a few of my CF friends. *sigh* Glad my little college-life story could amuse everyone!

To solve the problem where I could do TOBI without turning the air on really low so it would run for 30ish minutes, my smoke alarm went from this

to this

at least for now. When I finish TOBI I'll take it down... we have 3 other smoke alarms in this tiny apartment so I'm not really too worried.

So watch out TOBI users!! Smoke alarms and TOBI do not mix!


Sunday, September 13, 2009

Sunday morning....afternoon doc visit

My pediatrician's clinic actually sees patients on Sunday from 10-11. With my cough not getting any better, my mom wanted me to go see whatever pediatrician was on staff that day. We got to the clinic right at 10... and had to hunt for a parking spot. That's a really really bad sign. We signed in and found two seats that we became very well acquainted with. Roughly two hours later, we were called back. First thing they do is get my weight. "112lbs".... GRRRRR. The nurse gets my symptoms and tells me the doctor will be right in. A few minutes later, a pediatrician walks in. I've never seen this doctor before, but he's looked over my chart. Just in case, my mom reminds him I have CF and then we go over my symptoms again. No fever, no aches, no vomiting... I don't have the flu, man. He does a CBC and a chest x-ray just to better understand what's going on. So, after blood is squeezed from my poor finger, and my chest had been x-rayed, I also get a flu test. That was kinda uncomfortable for those who haven't had one. CBC comes back with slightly elevated levels but nothing to be alarmed with. Chest x-ray comes back clear, as usual. Flu test comes back negative, big surprise. My mom and I continue to wait.

The doc decides I have walking pneumonia and wants to put me in Zithromax. For those who read my drug list, you'll see I'm already on it. So we told the guy this and he stopped in his tracks, poor man. He was stumped. After lots of thought and brainstorming, he decides to put me on an antibiotic of medium strength to prevent a secondary infection. So I'm back on cipro. And then I got my flu shot. Yay! I've never been so excited in my LIFE to get a flu shot. I'm here at college *freaking out* because people are sick all over the place. As soon as the H1N1 shots come out, I'm getting them. I just can't get the flu of any kind!!!

So that was my 4 hour Sunday trip to the doctor.


Friday, September 11, 2009

Daily Life and Background

Daily life for me is in the middle of readjusting to living in a new city for college, but that doesn't change my CF routine. And why doesn't it change my CF routine? Because that routine is such a small part of my life that it takes a lot to be affected.

Whatever time my alarm goes off (or whenever I wake up), the first thing I do it get my morning treatment ready. I'm on auto-pilot during these times, especially those mornings I get up in the 5 am time frame. I do TOBI on the 28 days on/28 days off regimen so when I'm on TOBI it's Albuterol and TOBI, otherwise it's just Albuterol. After I'm ready for school/church/the day, it's breakfast time!! With breakfast I take those morning meds: 5 Pancrease MT20 Enzymes, Oscal Ultra with 600mg of Calcium (and no Iron), Align probiotic, Vitamin E, Vitamin K (every other day), Mucinex, Milk of Magnesia, Zyrtec, and Zitromax (MWF). Come lunch time, I pop 5 more of those Enzymes. If I'm kinda sick or just feeling in need of some better breathing, I do an extra Albuterol treatment whenever I can fit it in in the afternoon. "After school" hours means another meal! And 5 more Enzymes! Dinner brings more of the same and a few more pills: Oscal Utlra again, Prilosec OTC, Milk of Magnesia, and another Mucinex. Sometime before I go to sleep, I do my evening treatment: Albuterol, Pulmozyme, (TOBI when I'm on it), and ~13 minutes of my Vest on pressure 6 and frequency of 11.

To assist with the weight gain, I also drink ScandiShakes (chocolate!). They are fantastic.

I don't have the specifics on my FEV1 but it's usually in the high 60s low 70s with the %. Next appointment, which is late October, I'll try to remember to write it down. I'm 5'4" and ~119lbs.

Hospitalizations: I stayed in the hospital from the time I was born (Oct. 29) until Dec. 10. During that time, I was diagnosed with CF, treated, and had meconium ileus. Because of that, I had surgery to fix it (and they removed my appendix). Sometime when I was 3, I went back due to obstruction and they reopened the same scar from surgery #1 and fixed it. So now I have a sweet 6-inch scar across my stomach just above my belly button. Swimsuit season used to be a curse for me, but now I wear my scar proudly. 7th grade, I went in for my first IV antibiotics because I was so sick. 4 days in the hospital and 2 weeks total on IVs. This was before PICC lines. So I had a needle in my arm. Fun.... not. I've been back in the hospital 3 more times for antibiotics (with PICC lines): once during the end of 11th grade, during Thanksgiving of senior year, and during March of senior year. The March of senior year was for a short course to prepare me for sinus surgery, my first ever. Post-surgery, the day after I was sent home, I fell ill to pneumonia. So back to the hospital I go for more antibiotics and more Vest usages. Of the combined surgery and pneumonia stays, I was there 12 days. That was too long for me.

Genes: I have the DeltaF508 and some rare one that I can't remember the name of it. They just figured out what it was a few years ago. Last I hear, they considered it a "null gene."

Diet: Anything goes. High calorie, high protein, high sodium, high fat, high carb....

Oh, the reason for the milk of magnesia in my diet is because in 5th grade, I had been waking up every morning with severe pain in my abdomen but no doctor ever found anything wrong. Finally, after drinking barium and having a barium anema done, they learned I have a stricture in my colon (narrowing of the colon) and need M.O.M. to help my digestive process.

Family: I have 2 older brothers. Neither have CF. One has been tested so far and he is not a carrier. My other brother will get checked soon. I'm the only known person in my family to have/have had CF.

Not sure what else to tell you! Any questions? My email is at the top of this blog at all times.


Tuesday, September 8, 2009

"Thank you..."

Yesterday I did something I had never, ever, ever done before and never, ever, EVER dreamed I would ever even do. (It's not a juicy story, so don't get all worked up, haha)

I'm ill. With what, I couldn't tell you. I had mentioned in my last post that it wasn't the flu, and I still think it's just a cold. Either way, I'm coughing so much that for the second day in a row, I still don't have a voice. It's BAD. I'm convinced I cough all night while I'm asleep and wake up even more hoarse, not letting my voice heal over-night. Most of my coughing has been dry coughing (not producing any of the mucus I need to be coughing up from my lungs) and that doesn't do me any good. So last night I sat down to do my Vest and about 6 minutes in, I have this wonderful productive cough that makes me feel so much better. I turn to my Vest... "Thank you...". People, I hate that thing. I cannot stand my Vest. I do it like I'm supposed to, but I don't like it. When I'm sick to my stomach, it makes me feel worse, and it's just annoying in general. I know it has health benefits which is why I do it even if I don't want to. So it was quite a unique moment when I turned to my Vest and thanked it for helping me, for doing its job.

So while I may hate it, I do appreciate its help. So here's to you Vest. And the fridge you sit on.


Monday, September 7, 2009

WOO College life!

Ok, so that post about my history/lifestyle will indeed have to wait.

I have comfortably moved into my apartment, been through Rush, helped my roommate move in (well, sorta haha!), and joined a sorority! SIGMA KAPPA! I'm pretty excited about the whole thing, really. I think I caught a cold/sinus infection/not the flu during Rush, so I've been coughing WAAAY more than usual. And during Rush there is a lot of talking to people and last night was a lot of yelling for your sorority. Naturally, my voice is shot. I'm doing TOBI right now, and I didn't realize my voice had died until I read something on facebook and made a comment outloud. Boy was that a shock when I couldn't keep a level tone and some words didn't come out at all!! My voice *usually* heals over night, like the rest of my body except my back, but if I'm still coughing like this then it won't. And meeting all of my new sorority sisters without a voice is going to be difficult! But since when I have I backed down to a challenge?? lol

Oh, and today, is a pool party and karaoke. Yep, they are probably going to make me sing with a voice like this because I told my heart sister Emily last night that I could sing. Whoops!

Oooh... I'm hungry. It must be time for breakfast. Yummm


Monday, August 24, 2009

And the countdown begins....

From Monday, the count is: 9 days until college life. Wowza. That's.... soon.

So I started that running routine and, except for this weekend out of town, it has worked well. I get up ~7:10, do treatment, and try to be out of the door sometime soon after 7:30. I have been taking two laps around my neighborhood running the pace of [3 minutes running, 1 minute casual walking, 1 minute brisk-power walking, repeat]. There is a small hill in my neighborhood. It's small enough that it doesn't intimidate, but steep enough you FEEL it.... oh man. And I start getting weary near the end of lap 2. But I have to keep going. I keep encouraging myself. I keep reminding myself that CF doesn't quit, doesn't take a day off. CF wants nothing more than to win me over, and I take pride in making my goal to stand in the way of some[thing] else's goal. So I run in the way of CF's goal and I keep running. If that makes sense. It's like half symbolism and half real. Haha!

In an upcoming post, assuming nothing drastic happens before then, I plan to kinda give a brief overview on my life: the part with CF, the part without, my family, my sport, my meds, everything. Just lay it all out there so there is no confusion at all about my situation.

One last thing. Hey, CF, you're not going to win this. Are you listening? I am stronger and more determined than you can ever be. You've made me this way, and for this I thank you. However, I don't need you. Please, just try and stop me from living my life. You already have and so far it hasn't worked. Even with a PICC I played physical soccer for a very important game. I push through even when others think I should quit, because of you. I'm going on to be great and you will be nothing but backgruond noise. I'm not afraid of you. Try me. I don't back down from fights, and this is no exception. The more you bother, frustrate, hurt, and try to take over me, the harder I fight back. So c'mon. Bring it. Because I'll bring it right back, 10 fold. You. Will. NOT. Win.


Wednesday, August 19, 2009

"Sign Danger!"

So I keep up with a few other blogs of people with CF and 2 of them stress the importance of working out daily. When I say stress, I mean glaring-in-your-face-with-a-florescent-sign level of stressing. After ~13 years of soccer and 6 years of that being premier/varsity level, I'm ENJOYING my break. Premier and varsity level... they work ya hard. And then being a goalie... basically I did everything the field players did (the running, leg work-outs, etc) AND had a goalie training (more running, arm, leg, core workouts, DRILLS DRILLS DRILLS, endurance training, etc.). Being a goalie is hard work, people, trust me. It's not for the fat kid who can't run like everyone likes to believe.

These people who are writing the blogs about the importance of working out/running when you are a 'cystic' are later in life than I am and probably wish they had started this earlier. Ok, here's where we put, as my French teacher called it, a "Sign Danger". A Sign Danger is usually placed when the French grammar is different or needs special attention. In this case, the fact that I'm learning this piece of advice from the experience of others older than myself needs special attention. When we drew Sign Dangers, she would tell us to use many colours. That's a Microsoft Paint drawing of kinda what some of my Sign Dangers from French looked like. I owned many different highlighters.

So what does this mean? I have 2 weeks left before I leave for college. When I get to college, I'm living VERY close to the intermurals center. Will I make up excuses? Or will I get up early every morning and go running before my 9:30 or 10:00 am classes? More importantly, will I start running in the morning NOW to work up a habit as I get to college? If I don't, there will be an even larger Sign Danger next to my PFT results because I didn't maintain my health. So, tomorrow, I start running again. Darn.


Sunday, August 16, 2009

Saturday on the Lake

I spent a large chunk of Saturday on a lake with my friend Gaelin, my friend Alissa (see Sci-port adventure) and Alissa's grandfather. When riding in a fast moving boat, my favourite place to sit in near the bow (the front, for you land creatures). When hitting a wave, it gives the same senation as sitting in the very back of a school bus: a bumpy ride. But there's something I love more than feeling like I might be thrown from the boat at the next wave: I love the wind in my face. I breathe the best at these moments, when oxygen is not only being inhaled but practically forced into my respitory system. Those times when it's actually harder to exhale than inhale. It's relaxing and I feel CF free for those few moments. Bliss.

Well, the lake was bliss until I was floating in the water downwind of 2 people who decided to smoke IN the water!? I'm blunt when it comes to that. Kill yourself, but don't take me with you. I've got enough lung problems without your help. Thanks.

But other than that, the lake was a success. Today, I'm VERY sore from my master tubing abilities, but it was very worth it. Now, I just wait for Sept. 2.
*Checks calender*
This is going to take a while....


Thursday, August 13, 2009


I love Sci-port. And I went today with two of my Chem 2 lab partners. How geeky, right? Oh it was awesome. [Link to Sci-port]

I went to gift shop afterwards and bought some of that Galaxy Slime. You know, that putty stuff that feels like it's a liquid but is more like the movie character Flubber? It's great. Here are the pictures from that adventure.

A really neat camera. That's me with my aviators on.

A face morpher thing. That's me

My friend Alissa, morphed

And Caleb without a body. Whoops. The army might not want him anymore.

As you can see, we had fun. :] Sci-port is the place.


Sunday, August 9, 2009

Can I be negative for just a sec?

It's not actually that negative, but most of my friends/family will find it that way. I started thinking: I'm almost 19. Double that and I'm at 38. Today the current life expectancy for people with CF is ~35 [Ref.][Ref.][Ref.][Ref.]. That means I'm in my "mid-life"! Shouldn't I buy some fancy sports car and doing crazy and wild things??

Sorry for thinking like that but for me, it's a brutal truth. No, I'm not counting down the days to my 35th birthday, but I do think realistically at the things my friends/family don't want to even let cross their minds. **SPOILER** Wake up people. Odds are pretty good that if a car crash doesn't take me, CF will. And it won't look at my kids when I'm older and think "Oh, what cute kids. I should let her live longer." And then CF just sits in the backseat for 20+ more years. No. Sorry. That's not how this works.

No, I'm not pondering on morbid thoughts. No, it really doesn't bother me. Sure, sometimes but isn't that normal?? But it doesn't right now. It's just something I think about because it's not like I can hide from it. I actually found it slightly amusing that I'm in my "mid-life crisis" about 20 years before everyone else. haha.

Ok. No more thoughts like that for the blog tonight. Sorry for being a debbie downer. lol


Monday, August 3, 2009

Real Stuff updates

Exactly 1 month from today, I will be living in my college town for the first day of Rush. I'm pretty excited. Sometimes I get this wave of nervousness (or dream anxious dreams...) but then the excitement comes back. I think it's pretty cool that the same kid who wasn't really supposed to make it out of the hospital at birth, or live past 3, is going off to college. It's been a really cool road to get here too. Despite having CF, most of my life hasn't been medical. Most of it has been spent playing soccer, going to school, and being with friends doing what "normal" kids do. What a crazy life God has given me. I mean, He gave me life and then threw in this curveball to deal with everyday and yet, He gave me a pretty normal life.

I listened to a sermon on Sunday of a guy in College Station, TX, and he said at one point about his herniated disk problems, "No, I know this isn't a cure, but it will help. And I plan on doing the best I can to be ready for when God does bring that healing for me." Those words really hit me hard. This really applies to any medical problem, but to do everything possible to get better so when God decides to heal you, you've literally done everything possible to get to that point. Wow. That's not me. I get so lazy and tired of doing what I'm supposed to do sometimes that I just do something half-way or not at all. Yes, I know it's destructive. Yes, I know it's hurting others besides me. Yes, I know it's selfish but you try dealing with this everyday for 18+ years, no breaks, no mulligans, no getting actually better. Just keep doing it. (And for those who are in the same position as I am, have you ever skipped stuff? Most likely, yes.) However, with this new freedom of college, I'm going to have to step it up because sometimes it's going to be even harder to stay on top of everything I have to do since I'm managing literally ALL of it now. So this attitude of "do everything I can so I'll be ready" is what I'm trying to grab and hold on to. I know there will be times when I'm shot down completely because I can do everything right and I still get sick or don't feel well. That's like a kick in the stomach for me. I hate that more than anything. But oh well.

Other things.. umm... my high school friends start back 2 weeks from today. Poor kids. I'll be there that day to pick up my yearbook, but not going to class there anymore. :]

Oh! I gained weight. :]]]]]]] I gained the weight I lost after my sinus surgery in March/April. That means I had a very happy doctor's visit recently.

You know what I love? I love seeing my doctors outside of clinic. I went to a movie in the park and saw my nurse practitioner. At work (well this one makes more sense) I see my pulmonologist, my dietitian, my nurse, and once my main CF doctor. It makes my day. I always run up and hug them.

Alright. Time to get moving with my day.


Thursday, July 23, 2009

Where has the time gone?

Between trips, orientation for college, and having a broken laptop, TIME HAS FLOWN! But Lappy is mostly repaired and I'm back. The only thing that's really current is that shopping for college is more fun than pretty much most anything else. I am *giddy* at times. Part of me is eager to move into my apartment and part of me is content here at home for the summer. Either way, I get to enjoy the summer until I get to move into my apartment so I guess I win both ways?

Nothing else to really update on. Oh, except I had a Dr. appt yesterday and I had gained 5 lbs since my appointment in April. For those who don't know, that's a big deal and a VERY good thing. So yay!!


Saturday, June 13, 2009

Deep Thoughts

I've been on two trips lately and have had a lot of time to just think. Here is where I get those thoughts out, so here we go.

Well wait. First a basic update: Boston was amazing (choir tour) in so many ways and Myrtle Beach (Emmons family vaca) was too in a completely different way. I loved both trips and had tons of fun at each. Boston: Spiritual growth, friendship growth, hard work in God's name, outreach, service, music and STOMP, and a whole new place. Myrtle Beach: "family" growth, deep chats on the beach, parasailing, shopping, doing beachy-things, people watching, and just a really awesome time with a family I feel I'm a part of.

Ok. Now it's time for deep thoughts. (Kid, brace yourself for part of this...) [And people, this is just me talking. I'm not looking for an argument, just stating my own personal thoughts. Don't be offended by any of this. Don't like it? Don't read it.]
Churches and religion can be such a touchy topic for many people, and while I may get defensive about it sometimes, I still find it very interesting to read up on. While in Boston, I went on a prayer walk route that passed two Jewish temples, a Kabbalah center, and a Devotional Elementary school. The Jewish temples were not like anything I've seen here in Shreveport. They were large and majestic, towering over neighboring buildings. We had planned to enter one if we had had more time, but unfortunately we didn't. The Devotional Elementary school was the only Bible elementary school in Boston. We're not sure of the exact teachings that went on because while sitting outside of it, we noticed children of obviously differing faiths on the playground. While this surprised me seeing as I wouldn't let my child attend a school that spent time each day teaching out of the Qur'an or the Torah, seeing as I'm a strong Christian, it also reminded me that there are people of other faiths at Loyola, for example. Just because they are forced to sit in Mass doesn't mean they are forced to participate. It is still a mind-blowing concept to me. The Kabbalah center was very interesting to me. I had never heard of Kabbalistic teachings until this prayer walk. There was a sign outside the center to explain their teachings. Here is basically what it said, "Kabbalah — the world’s oldest body of spiritual wisdom — contains the long-hidden keys to the secrets of the universe as well as the keys to the mysteries of the human heart and soul. Kabbalistic teachings explain the complexities of the material and the nonmaterial universe, as well as the physical and metaphysical nature of all humanity. Kabbalah shows in detail, how to navigate that vast terrain in order to remove every form of chaos, pain, and suffering. For thousands of years, the great kabbalistic sages have taught that every human being is born with the potential for greatness. Kabbalah is the means for activating that potential. Kabbalah has always been meant to be used, not just learned. Its purpose is to bring clarity, understanding, and freedom to our lives — and ultimately to erase even itself." (Ref.)

Interesting. Especially that last line: "and ultimately to erase even itself." Wow. The thing about this teaching is that is sounds so promising, so wonderful, so.... so sad. It's just sad. Searching for truth within yourself will be in vain because we don't hold the Truth. But that's a whole 'nother topic that I'm not going to post because I've already stepped into some touchy stuff. Moving on.

On choir tour, we have this thing called Senior Affirmation. This event is every evening where one senior has to sit in front of the rest of the choir for a while and let everyone say affirming things about them. It's sometimes very emotional because it's a way of saying goodbye too. As I sit and listen to everyone affirm the seniors (and myself), I hear one phrase so many times in various ways: "You've been through so much." That should not be the case. As I started my list, I counted for sure 8 out of the 15 seniors who had been through, or are still going through, something tragic, extremely difficult, and burden bearing. It ranges from loss of parents, serious sibling issues, dea-th, alcohol, depression, and then of course me and my health. I was floored when I really sat and thought about it. This isn't even counting the underclassmen who are dealing with the same things. Why is life so rough that by age 18, we've already been through so, so much?? Is it to shape us to the person we are supposed to be? To build character? Or just drawing the short straw? Jeremiah 29:11 says that God has plans for us, not to harm us but plan to make us prosper. I fully rely on that, but when I can't see what God sees, I have trouble understanding why we go through "so much."

I've started a scripture journal. I have these moments, struggles, and friends and sometimes I just need to pull a scripture out of the air about [insert topic]. So I've created this organized compilation of scripture so that when I need a verse about [worry, dea-th, God's faithfulness, strength, etc.], I have it on hand. It's been a blessing to create it (I still have a long ways to go) and I encourage everyone to do the same. Even if you feel like you aren't that close to God and yet have the desire to be, this is a *fantastic* way to indulge in His Word. To find these verses, I pull from my daily devotional, Sunday School, the sermon, Hallmark cards, ANYWHERE I find a valid scripture that fits under a category. I have a long list of topics so let me know if you need ideas or a verse. :]

While sitting on the beach this past week, I asked my dear sorta-sister, "What makes the beach so beautiful?" Feel free to answer but I have mine. It's the same thing that makes bad words bad and parachute pants popular in the 1980s: because society says so. When generations of people have said the beach is romantic and beautiful and revolved honeymoons, cards, and "long walks on the beach" as a romantic notion for so many years, it's ingrained in our minds that it is so. Don't get me wrong: I'm in the same boat because I think the beach is gorgeous, but I was simply asking, "Why?"

This is quick and simple. Betsy, you might want to answer this part for me if you want. God commands us to follow the laws and authorities placed over us (as long as they don't conflict with God's commands). It would be a sin to disobey or break the laws seeing as that's not respecting authority. I drive without shoes on, which is against the law. Am I sinning every time I get in the car and kick off my shoes to drive? Do Catholics who go to confession remember sins like that too when asking for forgiveness? I'm serious though, is that a sin?

(MRE, this is the part you need to possibly skip over?)
Ok, I'm not going to give background on this because it's not my place, but I got to thinking that in a weird, twisted way, dealing with the loss of a sibling very early on is in a way like dealing with a chronic disease. There is a situation I'm aware of where a friend of mine lost her older sister before she (my friend) was born. A few months before she was born, actually. So the question is raised: when asked if she has any siblings, is it a yes or a no?
Sometimes I have those days where I cough more than usual for me. As any good caring person would do, they ask, "are you sick?" Is it a yes or a no?
While my friend may not have a sister living, she HAD a sister. In her place, I would answer "no" in the same way I say "no, I'm not sick," simply because I don't owe anyone an explaination of my health nor does she her family situation. [To my friend:] In the same way that by me saying "no, I'm fine", my health problems don't disappear, neither does Danielle when you say "no, I'm an only child." Just my 2-cents. :]


Whew it's 1 o'clock


Wednesday, May 27, 2009

Thoughts from an Alumni

Graduation has come and gone. I got my diploma, my final report card, and walked out of Hirsch a different person.... an Alumni. That word makes me feel old. Like I owe the school money now. (Actually, the school owes me $200 for a scholarship....)

So far, nothing really seems different. It hasn't really sunk in that I'm *DONE* with high school. Not yet. Sometimes, like when we were back at the school while everyone was in class and we were pulling a senior prank, but not most of the time. It's just... strange.

It's a little scary because Magnet was so comfortable to me and I enjoyed that warmth of knowing all the teachers and most of the students and my way around. Now I'm going off to a new school in a new city with new teachers and new students. I'm up for the challenge, don't get me wrong, and I'm looking forward to meeting and making new friends, but it's a little intimidating. Luckily, I'll know enough people there to get around campus pretty easily.

First post-surgery sinus infection. NOW I finally understand how sick I used to feel all the time without realizing it. Wow, this sucks. I'm so drained of energy and my throat is me. Plus my sinuses hurt again. Haha how did I live like this for so long??

OH OH! I also learned one other thing: try hard in school. All 4 years of high school. They really, really, really do matter. All of them. Make straight A's. Just do it.

'Nuff said.


Saturday, May 23, 2009

Final evening

Tonight is the last night of my life that I will not be a Magnet Alumni. Tomorrow evening, I will walk across the stage, receive my empty diploma cover (get the diploma later), and be a high school graduate.


Yes, I'm ready for this moment of my life, and yes I've been waiting for it for quite a while, but it's like Christmas when you're little: it seems like it will never actually get here. And then it does. And it's weird. See, it just always seemed natural for those older than me to be a step ahead of me. Now I'm "catching up" to them by being in college too. Wait, hold on. COLLEGE?! I have never been nervous about college until this moment. My stomach just did flips. I can't imagine me actually in college. It doesn't seem like I should fit in. I'm too young... right? This is so weird!! I'm 5 months from being 19, less than 4 months from starting my fall quarter, and graduating high school in less than 24 hours. This is nuts. Absolutely nuts.

Time to rest up because the last few days have been insanely busy and tomorrow is no exception.


Monday, May 4, 2009

8 ....

Life has been EXTREMELY busy that I keep telling myself that I need to update my blog... but I kept not doing it. Shame on me.

I have 8 days left in high school. Let me repeat that: 8 DAYS. :D

This past weekend was prom. If I had a picture, I would post it. All the pictures are on 2 other people's cameras. But I did steal one from facebook. Hee hee. I'm so bad.

Prom = best night ever. I can't even begin to describe how much fun it was. I finally got the nerve to actually DANCE. It's about time, I know. I've been to 3 homecomings and 4 proms. You'd think I would have danced before. Pft. A little. But this time I DANCED and with 3 of my best friends and their boyfriends. It was so much fun. SOOOO much fun!

Lots of things have been going on (Sail-a-thon, for example) and I have really been enjoying my last few weeks of high school. Life is good. Life. Is. Good.


Wednesday, April 15, 2009

Life's Good!

Easter was good, things are good, Dr. appt today was good, everything's just good. :] I've spent a lot of time these last few days hanging with friends, catching up, that sort of thing. Basically, enjoying life! Tomorrow (well, I guess "today") I am going up to work to get some things done. Whatever, I don't mind. I'm in a good mood. Everything is good!

Except for the minor little setbacks of feeling really sick suddenly sometimes, I am improving drastically. A chest x-ray today showed the pneumonia is almost completely gone! YAY!

I'm working on a new quilt. Crazy, right? It's for a friend who is having twins, so I'm making a second one after this. I'll post pictures when it's pieced together.

I played Apples-to-Apples for the first time ever. That game... is FUN. With the right group of people, it is absolutely, down-right, hilarious. And I played with some of my Small Group s and my 2 leaders.... a fantastic group for this game. Fun evening. Love those s.

Nothing else really to mention I guess. Dang, I need to finish erasing everything in the giant ACT practice book for Emmons.... it's sitting on my desk so I don't forget.... hmmm.... I'll get to it eventually, kid, I promise!

Time to enjoy the rest of my Spring Break!!


Friday, April 10, 2009

Good Friday

I'm up so early on a Friday off because I learned that I have an ENT appointment today to "finish the job." Uh oh. I know what means and I'm honestly a bit afraid. He's going to numb the inside of my nose (it's a WEIRD feeling, trust me) and then clean out all the gel packing and any dried . Oh yay. Not.

I mean, yes, it's good but I'm not looking forward to it at all. He said it would not take very long, a few minutes, but that's a few minutes toooooo looooooong!!! I'll let ya know how that goes.

The rest of Good Friday is up in the air, aside from the Good Friday service at my church. My whole Spring Break is up in the air. I mean, I've got a book to finish, some work to do in the lab, and a lab to write, but other than preparing for state science fair, my week is free. :]

I know I already posted this, but I'm so glad to be home... so glad to be back. I've never enjoyed school more than those last two days. I was so happy to just be back to my "normal" because being in the hospital is NOT my normal. And I missed normal.


Tuesday, April 7, 2009


Yes! Finally, a blog post from my own desk! I'm home!!!

As far as the medical junk goes, PFTs were down, weight is down, but pneumonia is starting to clear up. BUT I still got to have my PICC line pulled so my arm is free once again. But man, it HURT to have this one pulled. It didn't help that while my sweet nurse was trying to cut my stitches, she had someone standing over her saying "oh no no. Not like that!" That did not help anything. However, once she cut both stictches, the only pain left was just the "after-throb."

Glad to be home,

Monday, April 6, 2009

Hello, setback.

"Parents and doctors both worried that I would catch pneumonia from just lying there all the time."

Dun dun duuuuuuuuun. Is that foreshadowing or WHAT? Guess who did end up getting pneumonia? Yep. Me.

Last Friday, the day after posting about how great I was feeling, seriously, 12 hours after I had posted that, I returned all the food I had eaten on Thursday to the porcelain shrine. It was a bad, bad day.

I spent from 9..ish until 4ish in the bed, crying, miserable, nauseated (or throwing up) with no relief. We even got some medicine for nausea, but it didn't work. Around 4 we realized I needed help so my parents rushed me up to the ER at Schumpert, where they had assured us there would be no wait. They lied. I sat in a chair for a good 15 or 20 minutes feeling like I was about to die. I was also denied at the children's ER, which had no wait. Once I was finally seen, it was discovered they my heart rate was 171, my blood pressure on the floor, I was EXTREMELY dehydrated, and I had a fever. Hmmm... thanks for making me sit and wait. I get wheelchaired to the triage where they were surprised to see I had a PICC line. "I was here 2 days ago, on peds." The nurses were glad to not have to try to find a vein on me!

After a few nurses come by and they got some fluids running through me, we finally see a familiar face: a guy we know from church is one of the ER doctors. He was as shocked as we were.

Five hours later, we are admitted into a hospital room. I had gotten an armband that said "511" so I knew I was going to be back on the pediatric floor again. YES. As I'm being wheeled away, someone asked what room I was going to. "511" "Oh no you're not. You're too old. 688 for you." What?! 2 days later I'm too old for the pedatric floor where I just WAS?? So I can't get continual care from the people who just took care of me? K.........

6th floor medical tower is no where near as comforting as the peds floor. But I guess that's more incentive to NOT return.... lol

As a side-note, a nurse on the peds floor is also the mom of a teammate, and one of my biggest fans. She printed out the "policy" on age limits for the peds floor. I am allowed to stay through my "entire eighteenth year." So technically, I really should have been on peds again..... but "change is hard, isn't it?" (rude receptionist told that to my mom on this floor)

I've enjoyed my company ranging from family members, to friends, to 4 grown men in tiaras and tulle skirts rapping to me, one of whom I'm proud to say is my father. :]

I just went and did PFTs (pulmonary function tests) and if they are stable still, and my chest X-ray shows improvement, I'm having my PICC line pulled and being shipped home tomorrow morning!!!! I hope that's the case because I'm really, really, REALLY tired of being here. Sad to say, but I'd rather be at school.

That's all for now. Signing off.