Merry Christmas!

Merry Christmas everyone!! :]

It's Christmas morning! I'm so excited. Yes, I'm 20 and still love Christmas morning. I'll always be a kid at heart.

I had another post ready but it just crushed the Christmas mood so it will have to wait until later.

I hope everyone has a very, Merry Christmas with your friends and families!

-Annie

A Christmas gift to myself

Merry Christmas again everyone!! :]

I hope your Christmas was just as fantastic as mine was, filled with the story of Christ, quality time with family and of course, great food.

On a less happy note...
Warning, brutal honesty up ahead. To keep your Christmas cheer intact, read later!
So, I'm frustrated with myself. I fluctuate on being compliant and not. Current status: bad Annie. But my Christmas present to myself is compliance.

It's a gift to myself because if I'm compliant now, I'll still have time for things later in life when I'll really want to still be around. And also for the now. Right now, I sound terrible, coughing too often for my personal comfort. I can barely play soccer. I can hardly sing. I can't lie down without people asking if I'm ok because I'm coughing so much. NOT OK WITH ME. Yet, I did this to myself. So, with roughly 20 days until my next doctor's appointment, I'm challenging myself to be 100% compliant. Not only in meds but also in fitness. I may not run 2 miles every day (although I am still really proud of myself from that day in Dallas), I need to run some and walk some. Mom also got Zumba for the Wii for Christmas and I tried it out with her today. It's really hard, but has great potential to be a serious workout. In an extension of my compliance, I've also upped my Vest time. Instead of 15 minutes once a day (which is surprisingly low), I'm doing 30 minutes at night and 15 minutes in the morning. This is not a suggestion, but an executive decision on my part to change my routine. It's set in stone as far as my compliance goes.

This morning was rough with the pills. Breakfast took a little longer than I anticipated to be ready, so I felt very sick for a few minutes with a handful of pills on an empty stomach. With a few crackers, it was remedied.

I can't decide whether this is going to be difficult or not. So far, it's not really been that hard, but it's been a mind of matter situation. It's so much easier to pop a select few pills and walk away than it is to wait and take them all, but I am getting my mind over the urge to just walk away. So far, so good. I've been 100% compliant so far and I fully intend to keep it that way. I've thought about getting someone to keep me accountable, but knowing myself pretty well (ha!), I know that the person gently reminding me or asking if I've taken everything, every day, would drive me up a wall and I would probably give up and be angry/frustrated about it. So it's just me holding myself accountable to myself and to this blog and to my own personal records.

I can do this.

My goal is to extend the compliant nature past my doctor's appointment of course, and hoping that by that time, things will simply be habit once again and I won't have to do a daily battle with myself!

Finishing up my 30 minutes of evening Vest, about do to my evening Cayston, then making myself a water, taking my evening pills, and then I'm off to bed. I've had a very, Merry Christmas and I hope you have too!

-Annie

Long time no see!

Hey blog readers,

I apologize for my MIA tendencies lately. However, when a lot of things come up at once, my blogging hobby gets put on hold.

So two weekends ago, I went to Dallas with almost 30 of my sorority sisters, just because! It was a blast. Instead of getting a hotel, 5 of us stayed at a mom's apartment and that was no doubt even more fun than a hotel would have been. Here's a picture to share!



The 5 of us piled in a Honda Fit and hit the road. Between the Tahoe, ice skating, shopping, that crazy mechanical dog that laughs, and my sisters, it was one of the best weekends ever.

And, be proud. I didn't bring my Vest, but Saturday morning me and two of my friends ran 2 miles. Yeah, you read that right. 2 MILES. I walked a little bit (a few seconds) of mile #1 but mile #2 was killer. Especially the uphill section at the end that I was unaware of until we got there!! Haha. I was really proud of myself though, and really appreciated my friends who ran it with me. I couldn't have done it without them.

So it's Christmas break! Yay! I'm home again and with my family. The brother/sisinlaw/niece from Austin are here for several days. It's been really great to see them and my precious niece! Yeah, it's picture time again.



Isn't she adorable?! *sigh* she has my heart.

That's about all that I can think of that's going on right now. The next several days will be spent with family and I'm pretty excited about it. My puppy is so tired though. She's working so hard to entertain the babies and avoid the big dogs while chasing the little dog. She's looked like this most of the time:



Oh, and with this little guy, we've hit a whole new level of fun: he's a pro at walking now. He's walking good, standing up by himself, chatty, and happy. He has my heart too, that precious little boy.



Oh, one more thing, I got an executive position in Sigma Kappa and I'm thrilled about it! I've been preparing to go back to school so I can perform my duties well. I just wanted to add that to the blog since it's about my life in general! :]

Until next time, have a very Merry Christmas, a Happy Hanukkah, and a fantastic winter holiday!!

-Andrea

New post soon!

As usual, I'm busy with school! But I had a great weekend with my Sigma Kappa sisters and I have a post about it coming very soon! Promise!

But first, I have a lab report due at midnight tonight. Sorry, that takes priority.

-Andrea

I'm Published!

I had been asked by someone who works at the Sigma Kappa Triangle (my sorority's national magazine) to write an article about having CF and how being a Sigma Kappa has helped! The Autumn edition of the magazine came out today and my article was on page 7!

Somebody to Lean On

Sigma Kappa with chronic illness finds support in sisters

Being a college student can be hard sometimes. Being a college student with a serious illness makes things even more difficult. At birth, I was diagnosed with a disease called cystic fibrosis (CF), a genetic life-shortening disease that makes simple body processes, like breathing or digesting food, more complicated. However, with many advancements made in technology and medicine, the quality and length of life for people with this disease has dramatically improved as I’ve gotten older. Now, just shy of 20, I’m away at college and thriving in all aspects of life.

Life with CF can be frustrating at times. Between the number of pills, the breathing treatments, and chest percussion therapy, a lot of time and thought goes into maintaining my health. Because of the rigorous daily routine, going to college is a challenge for people with CF. We must have excellent time management skills to be able to balance school, health, and personal life. Our personal choices are based around our health instead of what might be popular. And while making friends hasn’t been affected, letting those new friends behind my protective barrier and allowing them to see this vulnerable side of me is hard to do. I went to a college away from some of my closest friends, a decision that left me outside my comfort zone. I was nervous about branching out and meeting new people, afraid of their reaction when they learned of my illness.

At the suggestion of my family, and after some persuading, I decided to go through formal recruitment. Did I think I would actually join a sorority? Not a chance. I did not think of myself as a “sorority girl.” However, once preference day came, I knew my heart was already with Sigma Kappa. After just in the few days of recruitment, I could tell that these girls were new friends I could trust.

With these newfound sisters also came a newfound fear: telling them my biggest secret. I have been closed off my entire life about CF because I never wanted to be labeled. I was an athlete, a singer, a Christian, a friend, a teammate, but never the “sick girl.” I was determined to not let CF label me in college, especially not with my new sisters. The last thing I wanted was for them to look at me and see “cystic fibrosis.”

At the end of my freshman year, I wrote a letter to our executive council asking if we could take on cystic fibrosis as a local philanthropy -- my first step at trusting my sisters with my secret. Our President, Sarah Carroll, said that my sisters would support me in any fundraising I did. At the start of my sophomore year, I knew the Great Strides 5K for cystic fibrosis was coming up soon and I decided it was time to open up and trust my sisters with the thing I’m most afraid of sharing. I stood up in chapter meeting to explain the race and why it was important to me personally. After my announcement, there was only positive support. My sisters in Sigma Kappa stayed true to me, as I knew in my heart they always would. The day of the race, my sisters drove an hour to walk with and support me. Those that couldn’t come donated money to the CF Foundation. My sisters in Sigma Kappa have just started a long journey with me in dealing with my life-long battle with CF, but I know that when things get tough, my sisters will always be there. I couldn’t do it without them.

Video of hope

This is a great video about Vertex, the new drugs in the CF pipeline. This guy explains how the drugs work on a level that everyone can understand it. Please take a few minutes to watch it and hear the great news about the future for CF drugs!

-Andrea

Back in the swing of things

Classes started back up today, hello Winter Quarter. You're going to be just as difficult as fall quarter, if not more so. I enjoyed my first day of classes though. My physics professor is Russian, but after about 5 minutes, I adjusted to his accent and understood most of what he said. Walking back into my anatomy class was same ol' same ol'. Same people, same seat, same professor, same classroom, etc. The difference is the attitude my group of friends is taking about this class. We all made the same grade and plan to all make a better grade this quarter!!

I did some decorating in my room today! I hung up 2 collages of pictures, some curtains across my closet opening, and got a little more organized. Having guests in the morning... ;]

I have a cold! No!! It takes me awhile to fall asleep at night due to the coughing, but at least it's very sound sleep. I took a nap today that was supposed to be 30 minutes and turned into 4 hours. Whoops. I needed the sleep though. I just picked up some Dimetapp Nightime cold & congestion hoping that it helps me get to sleep easier and some Advil for my throat. I have also had NO Dr. Pepper in 2 days now. I've been drinking only water and sweat tea (mostly water) hoping it helps my throat/vocal chords. Trying not to talk too much either.

Dear Cayston users, consider joining the ShAIR network! It's easy, it's free, and it helps the CF community! Shoot an email to this address ( info@shairnetwork.com) or call (1-877-742-4770) and they will send you a simple form. Fill it out, fax/mail it back, and they will set up a phone interview. I really enjoyed my phone interview. If you want anymore information on the ShAIR network, email me or email the address I just gave you or call their number! Do it!

Off to wash dishes.. or eat more. Or both. We'll see. :]

Happy December!

-Andrea

Thanksgiving Post

Dear friends, family, readers, subscribers, and passer-bys,

I hope every one of you had a fantastic Thanksgiving, if you chose to celebrate it. Not all of my viewers are from the United States, but I still hope they had a happy Nov. 25 yesterday. However, those in the US most likely celebrated Thanksgiving, a holiday to celebrate the pilgrims eating with the Indians so long ago. They had so much to be thankful for then. In my opinion, we have even more to be thankful for now.

When Thanksgiving was approaching, I was thinking about what I wanted this post to say. I thought about a list of things I'm thankful for, but the list seemed to never end. I thought about just writing about my day with my family, but that just didn't fit either. Since I've been home, I'm already read 2 books and I'm halfway through my 3rd. I love reading, but I really only have time for it on breaks from school. Each book has taught me something to be thankful for, so that's what I decided to write my post on.

First book I read was "Love, StarGirl" which is the sequel to a book I love, "StarGirl." In short, StarGirl is a very unique girl who just "graduated high school" even though she's home-schooled. Her family moved to Pennsylvania where she connects with them in ways most people can't connect with people. From this book, I learned to be thankful for our strengths, weaknesses, and the beauty of nature.

The second book I re-read was "Number the Stars" which is a short, kids book focused on two families during the German invasion of Denmark during WWII. One family is Jewish and the other is not. The story tells of how the non-Jewish family protects the Jewish family and how they escape to Sweden. From this, I learned to be thankful for good friends, family, and my freedom.

And lastly, the book I am I re-reading right now is "My Sister's Keeper" (which was butchered in the movie; just read the book, it's phenomenal). It's harder to sum up this book, but it's about a family where one daughter has cancer and the other daughter was born to be a perfect transplant match for her. Now, the second daughter, at 13, has filed for medical emancipation from her parents right when her cancer-stricken sister needs her kidneys. From this book, I learned to be thankful for my health.

1. No, I'm not learning to be thankful for my health because I'm reading a book about a girl with cancer. It's not the "oh, she's worse off" mentality. Not at all. I already knew I wanted to post about being thankful for your health, and this book just said it too.

2. What did I mean "be thankful for my health"?!? I have CF! No, I didn't forget. Trust me, I'm doing treatment as I type this. I didn't forget. But I am very thankful for my health. Read on.

My health has it's ups and downs, along with every other person in this world. My ups and downs might just give you whiplash though. I am not only thankful for the good of my health, but the bad. Yes, you read right. I'm thankful for CF.

I think I just committed a CF-sin saying I'm thankful for it. But it's true. Without a shadow of a doubt, I know that I would not be the same person I am now if I didn't have CF. I also wouldn't know so many of the amazing people I know now, my friends through CF. I wouldn't have this blog! More importantly, my health has made me available to help others, through being an inspiration to some and source of strength for others. I don't think I would appreciate the little things in life as much as I do with CF. I don't think I could love people like I do now without CF. I just don't think I would be the person I've become without CF.

So thank you, cystic fibrosis. Thank you for helping me to become the strong, loving person I am today. Thank you, with all sincerity.

I am thankful for so many things beyond those that I listed here, but there's no way I can list them all. But know that you are on my list of things I'm thankful for. :]

-Andrea

Every Life got an award!

I got an email the other day saying my blog was being recognized as one of the top CF blogs of 2010! How cool! I now have the badge over in the top left corner (as you may have noticed). I'm just really excited about it. Another thing to be thankful for!

My thanksgiving post is coming soon! I'm thoroughly enjoying my break from school though. Tonight, Zumba with Mom!

Thanks for the award Registerednurse.org! Click on the badge to see who else won too!

-Andrea

JM update

He got the lungs! His mama said all went well and he's out of surgery. Yay!

The Call for JM

A fellow CFer, who I will refer to as JM, got The Call for his lungs about 7 hours ago. He lives in a city only 30 minutes away from me and the largest group at my local Great Strides walk a month ago was for him. I have no updates other than he got the call. I'll update as I know things.

Thanksgiving post is coming up along with a great video my mom showed me about some upcoming new drugs! We have so much to be thankful for!

Be back soon!

-Annie

Greetings, from the other side of finals week

The quarter is over and break has begun... THANK GOODNESS. That was a rough quarter, to say the least. But it's over now and it's time to relax for a while, eat lots of good food, spend time with family and friends, and then, once again, start thinking about Winter Quarter.

Health update!

I've still been coughing a good bit (I think it's related to my wacky schedule during finals week) but NO BLOOD!! I can't even tell you how excited this makes me. I still check each time I have a coughing fit, just to be sure, but so far nothing. Yay!

On the other hand, my gut it furious at me. This happens from time-to-time and is where most of my CF problems have occurred. It will pass in due time. Amusingly enough, when my colon makes really funny noises, it freaks my dog out because she doesn't know where the sounds are coming from. Hee hee

Speaking of my puppy, she's been very, VERY clingy lately (I'm talking thunderstorm clingy) and I think it's because she's afraid I'll leave again. The last few times I've been home during college, I've either not stayed the night or only stayed about 24 hours. Not long enough for my dog to be happy with it apparently. She's been enjoyed curling up in my bed with me, I can tell. She's there now waiting on me. Well, she's already napped on my stomach, curled in my knees, and on my feet keeping them warm during the day. Clingy clingy. But I love it. :]

Time to rest up for a Saturday or relaxation. Doing nothing is hard sometimes! Ahh, the joys of break!

-Annie

To celebrate the week of thanksgiving, look for my upcoming post on things I'm thankful for!

3 Finals down + pictures from the weekend

I just breathed a HUGE sigh of relief after those first 3 finals jam-packed into today. Even though I still have 2 really hard tests left (one Tuesday, one Wednesday), I feel so much better now that those first 3 are behind me!! I felt it was time for a post!

Teaser: some exciting news with Gilead Sciences (makers of Cayston) and some of their partners and me are underway, but no details until later! Just get excited, because I am!!

As of late, I've been devoting almost every free moment to studying for all of these tests. It's been really difficult, but somehow I've managed. My treatment schedule was really off though. For example, I normally do the Vest at night, but I'm doing last night's Vest right now, and will another evening one before I leave to go study. It's crazy, but it's only for a few days. Then HOME HOME HOME AGAIN!! I can't wait, seriously. I just want to pack up and drive home now. If only I didn't have those 2 more tests....

I went home this past weekend for about 24 hours to spend time with my brother/sis-in-law/niece/huskies from Austin, TX, and my in-town family who all gathered for my nephew's 1st birthday party!! Has it really been a year already?! Wow.

Here are a few pictures from the weekend:

Look who showed up! It's me and the boyfriend.
My two brothers with their kids!
Precious, precious niece. I think they look so much alike in this picture.

Such a sweet moment; a mother and her child.
She was so tired!! This picture is just too cute, I had to post it.

And last, but not least, the birthday boy and his mama!!!

Hunger has taken over anything else I can think to type about. Time for food!

-Andrea

MIA-- sorry!

Long story short:

Next Monday, I have 4 tests. 3 finals and a make up exam.

Next Tuesday, I have 1 final, a lab final, which is harder than the final in the class.

I have been MIA due to studying and this will continue until quarter break (after I finish my last final).

Otherwise, here is a quick announcement for those of you using Cayston, requested by some folks who work with Gilead:

DO NOT THROW AWAY YOUR ALTERA PIECES!!!! Save and reuse.

Also, SAVE YOUR EXTRA SALINE FROM THE CAYSTON DOSE! You never know when you might need them later.

I will make this announcement later too, just to make sure it gets across.

Signing out for another week; thank you college.

-Andrea

Birthday gift from the 'rents

So my big surprise (that AT&T ruined the surprise part partially) that my parents got me was an iPhone 4!! I love it so much. I am the last person in the family to be able to play Words with Friends on my own device! Before, I would just help Mom.

I'm looking for some apps that people find fun, useful, amusing!
Here's what I've got so far:

Plants vs. Zombies (game)

Angry Birds (game)

Cut the Rope (game)

Words with Friends (game)

The Weather Channel (tool)

Pandora Radio (entertainment)

Ringtone maker (tool)

Twitter (social)

Facebook (social)

Any suggestions??

-Annie

p.s.- THANK YOU MOM AND DAD!!!!! :]

Doctor's Appointment recap!

PFTs: same as my appointment last month

Weight: same as my appointment last month

Amount of blood I'm coughing up each time it happens: less than the time before

My doctor did not see that any action needed to be taken! That whatever the problem was, it was being fixed already. I will stay on the upped dose of Vit. K until the end of the year.

This is fantastic news!!!! Everybody was very confident in me (including myself) that I would get a great report and ta-da! I did!

Thank you for your concerns/prayers/thoughts everyone. I needed to go in to see my doctor and I'm glad I did.

:]

-Andrea

Birthday weekend

I had a fantastic birthday weekend! It started off with the Sigma Fall Party (on my actual birthday!) where they sang to me and I got a cake! Then I went home the next day and spent the day with friends and family before having to drive back to college that night. For Sunday was initiation for our new girls! They are official members of Sigma Kappa now! What an exciting time for everyone.

Doc appointment on Tuesday. I shall update again after that.

So far no more blood (yay!!) and we'll see how Tuesday goes.

Until then,

-Annie

Birthday!

Today is my 20th birthday!! I'm really excited about it! It's a good end to a rough week! I'll be spending it with my sorority at our fall party! I'll celebrate with family/friends from home on Saturday.

I love birthdays!!!

-The 20 y/o Andrea :]

Hemoptysis update #4

I talked to my doctor again yesterday. Here's the game plan:

I go back to clinic a week from today ( Nov. 1) and get my PFTs checked out. We'll see where to go from there (IVs, etc.).

If I cough up a cup of blood or more in one setting, I drive to the ER back home.

I'm back on the Vest.

So far, no more blood since my last mention of it.

I will update as things come up

-Annie

ps- Birthday Week!

Hemoptysis update #3

"Glad that's over"

What was I missing? Oh yeah. Knock on wood.

Too late.

I started coughing up blood again this evening. No where near the volumes from before, thankfully, but enough to be concerned about. Calling the doctor Monday morning. Taking myself back off the Vest...

This is frustrating. And scary. I really don't like this. I'm more afraid of what this means and what might have to be done about it than the blood itself. I got over that pretty quickly. But because it's not normal, I know I can't keep doing it. I'm just scared, that's all.

Sorry for the brutal honesty.

-Annie

Hemoptysis update #2

Alright guys, unknown cystic called me out. I've been MIA about my health updates.

I called my clinic and talked to my doctor. She was glad to hear I put myself back on Vit. K because she would have put me back on it too. She upped my dosage to once a day while I'm on the bactrum (and I still have several days left). I got the ultimatum that if, in 24 hours, I was still coughing up blood, I was to drive home and go see my nurse practitioner (because the rest of my clinic was at the conference!) and get checked out. I was to not exercise or do the Vest, or do anything to stimulate coughing, aside from just my normal day-to-day cough. Otherwise, nothing else was changed.

I prayed hard and waiting for the 24 hours to pass: no blood! I think my lungs got the message that bleeding is not ok and stopped. :] I just started back on the Vest last night, since the hemoptysis had stopped, but I'm being cautious with it. I don't want to start it back up again.

My doctor said it was either just the antibiotics or I actually had a bug of some sort. If I had any bug, I'm guessing the bactrum and Cayston took care of it. But really, I think it was just my lack of Vit. K in my body.

Hooray! Coughing up blood is NOT fun. Glad that's over.

Sorry for the late update, Unknown Cystic. I've been insanely busy with Sigma stuff and finishing catching up on homework from when I missed.

-Annie

Wordless Weekend

(Stolen, again, from Anjea/Jason's blog. My niece, Kiarda!)

Hemoptysis update

Yet another day coughing up some blood. This is delightful... *blatant sarcasm*. I did get it up and out though, which is good except for I kinda threw up a little too because it made me gag.

Here's the plan: No Vest while I'm still doing this, Dad's bringing me some Vitamin K (at the suggestion of Fatboy) because I was taken off of it a while back. I'm on Cayston and bactrum already, so any infection will be taken care of, hopefully. I'm also calling my clinic tomorrow to talk to my doctor and to see what the official game plan will be.

In the mean time, I have homework to finish and a few more preparations for Big sis/Lil sis week starting tomorrow! Let the to-do lists begin!

-Annie

Hemoptysis

So randomly and often spread out, I have had this liquidy, funny tasting, and hacky cough that I never understood. My gag reflex kept anything from coming up and out (as usual) so I never really understood what it was. Until Saturday morning.

My coughing wakes me up at 7:40am this Saturday morning. I'm doing that cough, the one I hate the most, where it feels like I'm drowning and I can't make it stop. I feel like I'm going to throw up all this liquid, not even positive what it is. I cough a ton, open my mouth, put my finger on my tongue and look at it.... blood. And not just a fleck or too. But a lot. I look at my hand more closely and find a lot more blood. My heart starts racing. I get up to do albuterol (not sure what else to do to make this stop!) and get on RunSickboyRun because I remember him saying something about coughing up blood. Sure enough, his description of the amount of blood (tbsp to cups) and the coughing fits. I have been having bouts of hemoptysis for years and never knew it.

I've had two recent bouts, both pretty bad, really close together. I'm hoping that this is just a coincidence, or maybe related to the stomach bug I had, but nothing serious. I remember seeing, while I'm throwing up for several hours, a larger amount of blood in what I was bringing up than ever before. Sometimes when I would cough, I would see a fleck or two, not a big deal. These are not flecks. These spells will fill my mouth of blood. However, for some terrible reason, I can't do anything but swallow it. So I am swallowing a large amount of blood and then I feel terrible for a little while! But if I get it out, I will start throwing up too, and then get REALLY freaked out and still feel terrible. Ugh.

Unless this continues frequently, I'm not making a big deal about it. However, I am scared to use my Vest on days when these happen. Should I?

-Andrea

I haven't forgotten...

So my lull in blogging is due to getting the stomach bug right after the Great Strides walk, going to the local Urgent Care clinic to get a phenergan shot, and a topical prescription, and then trying to make up important school things (like my English midterm!) on top of Homecoming week this week and preparing for big sis/lil sis week next week!!

The race was a huge success, as I mentioned before in my last post. I really appreciated everyone who came out to support me (including Alissa who drove several hours to get there!) and the amount of money that was raised was incredible. I'm still floored. $29,000. Wow. Just... wow.

Nothing else to really report on right now I guess. I've been given another incredible opportunity to tell more people about CF, but I won't actually tell about it until after the fact. Hee hee. :]

My birthday is coming up! I'll be 20!

Umm... other than that, I can't really think of anything to report. I'm back on Cayston, I'm on bactrum because I had a cold (prevent a second infection), and otherwise feeling much, MUCH, better than I had been over the last week or two.

Ok, I'm starving. Time to EAT!

-Annie

Great Strides walk- part1

The walk was a successful event!! I'm so happy! It was successful personally because 20+ of my sorority sisters came out to support me, along with some other friends from high school! As an event, we raised.... prepare yourself.... $29,000!!!!! And there were only about 150 people there. But we had raised that much money!

I would love to go into detail about the event, but my nephew is at my knees and pressing buttons on the laptop wanting me to play with him. I can't resist. Here's a picture of the race before I go. More details later!

-Annie

P.S.: this is my 200th post!!

Wordless Wednesday

Doctor's Appointment recap

First, I would like to say that I waste a lot of time worrying! And while it is a good thing to listen to your body and see what's wrong with it, sometimes our bodies aren't saying what we think they're saying. That being said...

I had a pretty good report! I gained weight, PFTs were stable, and my freaky lung pain is gone. We guessed that the lung pain was from my very sudden shift from a sedentary lifestyle to a very active one. My throat is hurting because I have a cold. That's all. A simple cold. No need for antibiotics, just to wait it out. AND, I was so worried about clinic taking the usual several hours and me missing my 1pm lab back at college, when this clinic visit only took and hour and a half! Shortest clinic ever! So not only did I make it back in time for my lab, I had time to eat lunch with the boyfriend too. Awesome!

So, here are the numbers:

Weight: 116lbs (up from 115)

FEV1: stable around 68%

I worry too much. lol

Starting Cayston today again.

Alright, time to carry on with my life. :]

-Annie

My lungs...

I have never felt pain like this. It's not that it's unbearable, but it's just that it's never happened to me before. I've been absent-mindedly trying to pull my sternum forward with my hands. Literally. I will not think about, but catch myself trying to grab my sternum. I feel like my ribs and my sternum and pressing down on my lungs and it's making it hurt when I cough, swallow, and sometimes breathe. I really don't know what's going on, but since I go to the doctor in a few days, I'm sure they can tell me. This whole thing started this morning. I felt terrible, but I thought maybe it was just the start of a cold. However, I never got a cold. Just this pain in my lungs. NOT COOL.

I'm really becoming more anxious that I'll be sent to The Hole (aka hospital). I can tell I've lost weight because rings don't fit right and my jeans are too loose. And now my cough is getting worse, I got winded walking up one flight of stairs in the cold this evening, and now lung pain. I'm done for. There is no way I'm getting out of this Hole sentence. However, and I say this with emphasis: I DO NOT HAVE TIME RIGHT NOW TO STOP MY LIFE FOR A PICC LINE. I'm on step-show, I have a heart sis and then soon is Big sis/Lil sis week, and Homecoming week is coming up (which is super busy!), and an English midterm, and classes in general that are hard to do outside of the class itself (like anatomy LAB).... and oh yeah, MY 20th BIRTHDAY. I really really can't stop everything right now. The CF Great Strides walk is this weekend and since I'm the one that rallied everyone together I figure I should probably be there to walk it with them. Official verdict will be in 2 days. Pray pray PRAY this is an easy, non-hospitable, fix. Needless to say, I'm freaking out. No tears yet, but they will come. Either when they sentence me to The Hole or when they let me squeak by. I'll cry either way.

I have happier news, and those who are FB friends with me have seen it, but I don't want to dampen that news with my lung pain and fears. So it's another post for another day.

-Annie

My life is always busy....

....and I wouldn't have it any other way! But that's why I'm slow to update. Current status: my hair is wet from my quick shower and I have step-show practice in 25 minutes.

I slept for 15 hours last night. That's insane. My body literally shut off at 7pm last night. I couldn't keep my eyes open. I crawled into bed and the battle was over. Gracious.

Doctor's appointment this Tuesday. *anxious*

Ummm I can't think what else to type at the moment. Super busy with the new Sigmas but really enjoying my time hanging with them and my other sisters.

Morgan (real life fake sister) and her friend Celeste came and toured the campus and then hung out with me after I got out of class. Morgan cooked for me (again). :] Then I passed out. Maybe she drugged me or something....... just kidding.

Ok, I need to get ready for practice.

Bye!

-Annie

ps. Lots of people from Sigma have signed up to be with me for the Great Strides walk this next weekend. :]

Sigma Kappa sisters are REAL.

These two pictures are of my pledge class in Sigma Kappa. The first is us being crazy on bid day and the second is from a formal photoshoot we did around town (photo #2 credit to Britney and Brandi Smith, Sigma Kappa alums).

I never thought I would be a part of something so amazing, but yet here I am. This sorority has gone above and beyond my expectations about what a group of women could be. I wouldn't be anything else but a Sigma Kappa for the world.

That being said, I made my little announcement about the Great Strides walk at meeting last night. I was shaking. My heart was pounding. It felt like the room was 130 degrees, even though I was cold just a few minutes prior. I made my announcement (with the help of notes!) and even included WHY this walk was so important to me, even if only so briefly. Nobody scooted away from me like I was contagious. There was no sudden gasp that resounded through the quiet meeting room. No whispers once I was finished talking. Nobody stared at me like I was now something to be feared/studied/avoided. The meeting simply continued, and a friend close to me both physically and at heart leaned in and told me I did a good job. She knew I was terrified. Before the next announcement in the meeting, a comment was made by our Vice President: "support your sisters". The next announcement was from another close friend. It was about supporting me [and the walk] monetarily if they were unable to go with me. These girls went above and beyond what I had expected as a result. I tend to fear the worst, and was more than pleasantly surprised when none of my fears came true. Immediately girls leaned over to me and told me that they would be there for sure. Others came to me after meeting and wanted to know how they could help if they were unable to come. The sisterhood that Sigma talks about is REAL. These girls really and truly care about me, my well-being, and want to support me in everything I do. I thank God for my sisters in Sigma Kappa.

-Andrea

A little of this... a little of that...

My mind has been going 1000 different ways at once all week. I still don't have much of anything to post about to take up a whole post, so I'll carry on about a few different things. I'll even number them for pure entertainment.

1. Guys rush is over!! No more late nights cooking food in mass quantities. Thank goodness.
2. I found out I cook a mean sheep dip. Don't google "sheep dip" because what I cooked is not what you will find. What sheep dip is in my family = meaty cheese dip in everyone else's. No one is completely sure where our term for it came, but it still stands.
3. I'm tired of people pointing out that I cough. Thanks, but I'm pretty well aware of it. Mind your own business.
4. Tonight is Sunday Night Soccer again! My legs hurt just thinking about it. It's gonna be fun, but I still won't be able to hang with the guys for very long. I get so winded...
5. Doctor's appointment quickly approaching... really nervous about that. I know I always say I have a bad feeling about the PFT results, but I do this time too. aaaahhhhhhhh!
6. I studied way too long for a test I didn't do nearly as good on as I had hoped. *frustrated*
7. Went back to my college-town church today and was reminded of how much I love it!
8. Great Strides is Oct. 9. This evening at meeting I'm going to get up the courage to ask my sorority to walk it with me. I'm terrified.

That's all for now.

-Annie

Everything huuurrrttsss

Central location of pain ATM: my right shin. Playing soccer at night with no lights with college guys and without shin guards, yet not backing down from any tackle because that's not my style results in a skin colliding VERY hard with a knee or foot or whatever that was. Thought I broke it at first, but apparently I just can't break my own bones (knock on wood!) so thankfully it's just a big ol' bruise. But, because it's never fair, you can't see my big ol' bruise! It's hidden, but hurts like crazy!!

Whoa, rewind. Yeah, that's right. I played soccer tonight. It was so much fun. As one of the few girls playing, I have to earn my respect. Working on it.

Seriously? About 2 weeks until my next doctor appointment? Didn't I just go?! Awesome...

I'm so tired. It's time for bed. Gnight.

I feel terrible.

-Annie

Oh, hang on. Graffiti party was epic. 100000x better than last year, and I loved it last year. I got there around 10:30 (started at 10) and the place was already packed out. I was there from 10:30 until 1 when the cops shut it down for noise. I mean, 800+ people, of course it's going to be noisy. So much fun. I bloodied up my foot though, but it's ok. It started hurting again about an hour into the soccer tonight. Happens. My shin welp still isn't visible but it hurts and it's really hot. Weird. NOW it's time to go to sleep.

Skin irritation...

So long story short, I have very itchy bumps around both of my eyes... NOT COOL. They have been bothering me since yesterday. I believe the culprit is my makeup.... it's probably just barely "too old" and needed replacing. I only put the base right around my eye, where I don't have any colour naturally, so I don't look like I have white raccoon rings. I tried to get a picture for you, but it's hard to do. They are faint, yet you can kinda tell something is off. Not to mention I haven't put much/any makeup over that area so I look ghastly. I just put a dab of cortizone itch cream hoping it would soothe... so far nothing. I'm just going to buy a new compact of my makeup and wait for the irritation to go down, and hopefully not get worse!

It's party time again! Graffiti party! I went last year and had fun and it's going to be even better this year! I've got my white shirt on and I'm going to be picking up my heart sis in just a few minutes to go! Can't wait!

In case you don't remember (or I didn't mention), a graffiti party is where everyone wears white shirts, the house is blacklighted, and everyone walks around writing on each other with highlighters so it glows. There's music too of course. When put into words, it doesn't sound nearly as awesome as it is in real life, haha! So pumped!

-Annie

Picture sums up my evening

This one picture sums up my evening. This, and a picture of Sewer, the Rat, that I held, but I didn't get a picture with her. It was a fun evening!

(Disclaimer, this is not my pet. Her name is Frances)

Update + meltdown

So I moved back to college and started work week for rush almost immediately. Work week has long hours but it so much fun! I really got closer to my sisters! Following work week was rush, which was even longer hours, but was a huge success! (Rush, for those who don't know, is a term for formal recruitment for the sororities/fraternities on campus). Rush and school started on the same day, so that made the long hours even longer. It's been neat to see my new sisters in my classes. Like in my anatomy class, we have a group of about 10 of us, which is awesome!

I'm still trying to recover from those two weeks. It's really hard to catch up, but I'm trying. This weekend is going to be fun too though! Football, parties, and bringing so of my freshman friends to my church! Just wish I could catch up on sleep somewhere in there... haha!

So opening up socially about having CF is having some repercussions I didn't expect... like people trying to baby me or mother me. No details, but one incident left me in tears. She meant well, 100%, and she had no idea that it would affect me, but it did. Another scenario, which is occurring more often, has me on the edge of anger plus tears too. This is not exactly what I had hoped would happen. This is actually my worst fear. I'm being labelled by my disease. How could I let this happen?? I want to fix it but I don't know how. Part of me wants to just stop mentioning CF completely and pray they forget. But what if I have to go to the hospital for something? They won't forget that. But I don't want to submerse myself in it because I don't want them to think I'm fragile, which is what it has come to. .........................

Running errands today then hanging with my sisters tonight. Gonna be fun!

-Annie

RUSH!

Hey! Rush just ended tonight. I had temporarily donated my computer to Sigma Kappa for recruitment so I didn't have one! SORRY for the absence! I'll update again soon with more info! But right now, I have homework!

-Annie

Good Time Management

Quick post/story about today

My schedule today was church, mock recruitment, and go home. The times were as follows:

Church- 9am to 10am

Be back at the Sigma house at 11:30

Mock Recruitment from 1:30-3:30ish

Workshop from 3:30-6

Skit rehearsal 6-we're done.

AHHH!!!

Somehow I had to fit in Cayston, which needs to be 4 hours apart, in there! How did I do it?? Good time management..........

..............in other words..........

I woke up at 5am to do Albuterol (fell back asleep whoops!) and did Cayston at 6am. I went back to sleep (on purpose this time!) until 7:something so I could then get ready for church. Then, between church and being at the Sigma Kappa house, I fit in my afternoon Cayston!! That was at almost 11am. That's 5 hours!!! WOO!! But if I hadn't planned out my day ahead of time, knowing how it was going to go, and then getting up early enough to get it done, my day would have gone very differently.

Mind you, if I had told our advisors/rush chairman that I needed to run back to the apartment to do some medicines, they would have let me go without any problem. But I didn't want to do that! I want to be THERE spending time with my sisters and singing the songs for the 1,395,599th time this week! I don't want to have to excuse myself from my LIFE because of CF unless I really need to. And today, it was fixable and I went very out of my way to fix it so I could be there when I needed/wanted to be.

Now, it's time for the evening dose of Cayston before I finish this round tomorrow afternoon!! Get excited, I know I AM! Just in time for Rush!!

-Annie

ps: I'm so glad my aunt and my sis-in-law got to come today! It made it even more special to me that you two came! THANK YOU!!

Rush Workshop: sick day

Yesterday I didn't attend the morning workshop because I was curled up in a little ball on my bed unable to move. Awesome. I showed up for the second half of workshop (after lunch) when I felt just a little bit better. Every girl I talked to told me to go back to bed. "This week doesn't matter as much as next week when we'll really need you!! Take care of yourself now!" So, I followed my sisters' advice and stayed in bed/on the couch all day yesterday. I hated missing workshop, but they were right. And I feel a lot better today! And, just to show another reason why I love my sisters, they made me a get well card! A lot of the girls signed it and it really did brighten my sad, sick day and made me feel better. I love these girls.

My voice is lost every day of workshop and comes back the next morning. Current voice status: shaky. But I need it for tonight because it's FOOTBALL GAME NIGHT!!!!!!!!!!

Still super busy. I get a break in a few days. Sorta.

-Annie

Rush Workshop: Day 1... CHECK!

Rush workshop.... so much fun. It's a LOT of hard work, but I love every minute of it. I love being with my sisters, I love the pride I have in my sorority, and I love all the things I'm learning!! I can't wait for this week to continue tomorrow!!!

To sum up my week....

-Andrea

Brief college update

I just wanted to let everyone know that I am back at college, mostly unpacked, fully stocked with food, and already hanging out with friends on night one. I'm super super DUPER thrilled to be back and I can't wait for all the Rush stuff to start. And then classes. And then I can't wait to hate school and plead for summer. It's a cycle and I love it.

It's been a long day and I'm pretty tired. About to do treatment and hit the sack. Night! :]

-Annie

Cayston: Complete picture walk-through

*Warning- a TON of pictures up ahead!*

*And click on the pictures for a CLOSE UP! And keep an eye out for my CF awareness band!*

*Lastly, thanks to DAD who took my cleaning pictures while I was demonstrating! A huge help, thank you!!*

Thanks to Feedjit, I notice that many of the searches that lead people to my blog consists of the word "Cayston". Since it's a new drug, I thought I would post a non-sponsored, completely my own advice walk-through of how I clean and use Cayston.

It starts off with the cleaning and then moves to the usage. Sorry, it's late, so I posted them backwards. You'll live. Just scroll down if you want to read the usage part first. It's labelled with a big, fat title.

Disclaimer: This is information I have either gotten from the CFF website, from the information sent to me with Cayston, or my own variations. It is not official medical advice, just something I thought might help people who were as lost as I was when I first started Cayston.

Mom's Disclaimer: Sorry if you see any sort of messiness or clutter. Pretend you didn't see it and move on. Thanks!

CLEANING!!!!

First, you need to get some dishwashing detergent that is *NOT* antibacterial!
For cleaning, this is the setting and the actors: dirty Cayston pieces, the detergent, and the Ziplock containers they sent with the Cayston stuff for the first time.
With warm/hot water, we rinse out all of the non-metal Cayston pieces...
....and place them in the Ziplock container, which is filled with detergent and warm water.
I usually separate the grey piece to make sure I get it all washed out. (WARNING- if you have a sink with two halves, use the side without the open drain! If not, cover it up... you don't want those pieces falling in!)
Rinse....
...and drop in the same container as the body.
Rinse both the blue rubber piece...
.... and the mouthpiece thoroughly, getting all of the openings too.
And in they go with the other plastic pieces.
Close the lid.... (but don't turn it all the way, because it's really hard to get back off)
...and shake it up!! Warning, water will go everywhere.
Rinse the head in a slower stream of warm water... both sides. (Note: this is also done immediately after finishing a Cayston dose)

Open the container with the plastic/rubber pieces and rinse them off individually with the warm/hot water. Set out to dry (see later picture)

This is how I set them out to dry. They don't stay here but more than a minute while I set up the sterilizer (aka Nuk baby bottle cleaner that they sent with the first Cayston dose)
Since I also washed the containers while washing the pieces, I set them out to dry. (For each paper towel piece you see, there is a second one under it, giving it a double-layer)
In the front of the baby bottle cleaner, there is a measuring cup. It took me WAAY too long to find it on my own, sadly.

Fill up to about the top.

And pour it in the metal pan
Here is the gut of the baby bottle cleaner.
This is where the main piece will hang, using the hinge of the piece. It will only fit 3.
Here's the top rack of the baby bottle cleaner. This is where everything else goes. I have mastered fitting in 3 Cayston sets in here without anything overlapping. Observe:
First goes in the head, which cannot lie flat. However, they fit perfectly around the legs of the middle knob.
Like such.
Next comes the assembled top piece, which fits between each head, making three points on a triangle.
The rubbed blue pieces, which I lay "face" down, will cozy up to the grey tops nicely.
And that leaves plenty of room for the mouth pieces. Perfection!
So now we put the gut of the baby bottle cleaner back on the metal pan
The rack on top of that
And then the lid!
Now, we have the one solitary button on this machine. What to do?

We push it down of course! Oh look, a light comes on! It will run a few minutes (the book says 8 I think, but it never seems that long to me) and you might hear a quiet "pop" noise. That's it for an alarm. However, you don't want to open it immediately after it's done, since it will be super hot and steamy (like me... juuuust kidding). So give it a few more minutes and take the lid off. It will be covered in condensation. I turn it upside-down, hit the knob on the counter to gather the water, and dump it in the sink. Problem solved.

This is how I lay them all out. Notice I open the grey pieces because the white part retains water. The blue rubber part doesn't air out well, so I prop it up on the mouth pieces and it does much better. Can you tell I'm an engineer's daughter?
I also prop the lid up so that it can finish drying too.

USAGE!!!!!!!!!

A little while later, after everything dried, it's time to do a dose!!! This is the glass bottle and plastic ampule that will be used. They are kinda cute.
First, we need to assemble the pieces. Take the large plastic one and open it.
The head goes in that funny looking side as such. It kinda snaps in.
The blue piece goes in opposite the head.
Close it!
Attach the mouth piece
This is where it connects to the power source/machine. It has a hinge and GENTLY snap it on. Mine is already broken in two places, but still works just fine.
This is the almost ready Cayston piece
The machine
The battery compartment is in the grey area. But if you don't want to use batteries...
This is where the hole is for the other end of the wall adapter. It comes with the Cayston stuff as well.
This end is for the hook up of the grey piece we already attached to the mouth piece a few pictures back.
We need that cute glass bottle again! Take the aluminum tab, pull down, and start pulling around to get it completely off. It breaks occasionally and can be a pain, but it needs to come completely off.
It will look like this!
Empty the ampule into the glass bottle, put the grey stopper back on, and SHAKE! It needs to be clear to inhale properly.
Pour it into the top of the mouth piece. It will only be about this much.
Put the grey piece on and turn to make sure it is closed.
Press the solitary button and hold for a few seconds. It will beep...
....and this screen will appear after the PARI screen. This means Cayston is going!
No talking! It's very short so if you need to take it out of your mouth, press the lonely button and hold to stop the treatment. It won't be happy with you, but it works. Like that I'm in the kitchen still?
It will beep 2 times and show you this screen when it's done. (Sorry it's hard to see) It lasts around 1 1/2 - 2 minutes. My piece will sometimes "click" a few times right before it's done, but I'm not sure if that's everyone, but if you hear that noise, don't panic!

GENTLY pull downward on the grey back connection to release it.

Open up the body and free the head. (It has tabs on the side you need to push in to get the head out)

Rinse both sides IMMEDIATELY after usage, and set out to dry.

And as an added bonus of fun, those nifty Ziplock containers they sent, they hold the Cayston pieces perfectly (probably the reason they sent them!)

Hope this was helpful!!

Link to the CFF Cayston video

-Annie