Overdue update

Well hello world!  It's been about two years since I've updated ... shame on me!  However, life has been busy, exciting, and I owe you an update.  Let's see if I can recap all that has happened.

Before I get there though: one of the reasons I stopped blogging was for fear of losing my job due to my "public" notices regarding my health.  That can't be any further from the truth at my job.  Not only is the company I work for supportive and caring, but the office I work in makes sure I am taking care of myself so I can continue to do my job to the best of my ability.  It's also a perk that our campus is 100% non-smoking.  No longer concerned!

Pics at the END of the post, some of them semi-graphic/gross blister pics-- just as a warning!!

HEALTH UPDATES:
Let's get the boring health updates out of the way first.  Then we can move on to life!
-Overall, doing well.

-Hospitalized summer of 2013.  Rashes, blisters, the usual.  I remember my dressing having to be changed multiple times, even in one day. Definitely NOT fun.

-Hospitalized late December of 2014, which of course is always no fun, especially around Christmas time.  Instead of the typical PICC, I got a midline to see if that would prevent the itching/blisters (see HERE for what I'm referencing).  I also prepped ahead of time by working with my father-in-law (what?! I'll get there) who was in contact with a 3M rep and got me samples of different dressings/tapes, etc.  A huge THANK YOU to the rep and 3M because what I did use was much nicer on my skin than what the hospital provides.  They also recently (in the last year or so) changed what PICCs are made out of, but I still went with a Midline.  Result: no major rashes and no blisters at all.  We changed a lot of things from the last visit, but it worked.  I can't say I like the Midline over the PICC though.  My line wouldn't draw blood so they had to set another IV very carefully in that arm to draw levels.  The Midline was much easier to put in though.  I'll have to make a decision for next go-around, whenever that may be.

-My CF doc and primary NP level the clinic.  It wasn't anything major political so everyone parted ways on good terms, but I'm sure going to miss them!  I go back to my clinic in Nov. to meet the interim doctor, so we'll see how that goes.

MAJOR LIFE UPDATES:
This is really what you've been waiting for anyways, right?
-11/9/2013: Andrew proposed to me.  It was as low key and sweet as I could have hoped for.  Long story short, we spent the weekend in our college town with some friends to watch a football game and see our bricks in the Alumni Walkway. Sunday morning before we went back home, we went to a park that we took walks in back in college.  He took me to a bench and proposed.  He was so nervous and it was precious.  Little sister Morgan was there to take pictures, of course, creeping from the bushes.  The whole thing was precious and apparently everyone knew ahead of time except me!  My parents were just waiting for me call at home, watching the clock.  I knew I didn't want the wedding to be far away so we called our wedding planner and set a few temporary dates.  Final date was set a few days later when we found out venue availability: March 29, 2014.

-During the short time between proposal and wedding, it's a blur.  An absolute wedding-planning filled blur.  My mom, who was not working at the time, did so much of the leg-work while I was sitting in the office.  There wasn't a single day that went by that wasn't at least partially dedicated to the wedding.  Without my mom, this wedding would not have been as perfect as it was.

-3/29/14: My wedding day!  It was held In the Round and couldn't have been more beautiful and perfect.  It was exactly what I wanted, dreamed about, and we worked to bring it to life.  So many special people helped pull it off (music, flowers, etc.) and we were surrounded by ~300 friends/family to help us celebrate.  It was wonderful. And most importantly.. I'm married to my best friend and better half.

-Soon after that we had a little one... a FLUFFY ONE! We got a Maltese puppy who we named Zoe
and she is a handful.  She was born 3/13/14 and she is a WILD ONE.  Stubborn, smart, and incredibly agile and athletic, she keeps me on my toes.  Couldn't have asked for a funnier pup with a bigger personality though.. she's a mess!

-Andrew and I lived in a rented townhouse for about a year.  He lived there since Oct 2013 and I moved in after our honeymoon cruise.  On February 27, 2015, we closed on a home!

-Current status: Andrew and a friend are remodeling our hall bathroom.  It's very loud, but I'm going back to work tomorrow (Happy Labor Day!) so I won't be here to listen to it.

RANDOM OTHER UPDATES:
Other things I feel like mentioning
-Andrew shot his finger with a nail gun.  I have a pic (see below) and it was a big deal for a little while.  He's got almost full ROM back now thankfully.  When the cold weather picks back up, we'll see if it still hurts him.

-I'm coaching soccer!  Last year (Oct 14-May 15) I assisted with a U14 girls team through our local soccer club.  They were also RPL (Regional Premier League) so we traveled a good bit.  This year, I'm assisting with a U17 girls team.

-We did a Spartan Race!  It was held in Austin, TX, in early November 2014.  Our team was me, Andrew, both of my brothers, and one of my sis-in-laws.  It was hard work but a lot of fun!  I posted some before/after pics below.

-I went to Vegas in Aug 2013 with little sister Morgan to celebrate her 21st birthday!  Since then she went a grew up on me.  She just completed her Masters Degree in Dublin, Ireland, and has since found a full-time job over there.  I'm incredibly proud, but miss her TONS. She just came back to visit for a bit.. yay!!



I think that's all for today!  Pictures below... sorry for the major gap!

 2013 Hospital Blister pics

 

Weekend of the Proposal!!

 

Spartan Race Nov. 2013

Wedding!!!

Zoe joins the Family!

Midline

Andrew's Injury

New Home/Car

Morgan comes to visit!!

Construction has begun..

 Thanks for catching up with me!

-A

Long time, I see.

In reference to the post below, I still haven't seen the results.  It's been almost a year.  I still remember that day-- I curled up on the floor of my apartment and cried.  I should have remembered that science takes forever.  Not their fault, I understand that.  I just should have known to not count those chickens just yet.

Hello world! I don't post much for a few reasons but primarily because I grew tired of it.  Occasionally, like today, I'll decide the posting isn't sure a tough thing to do.  It's nice to be heard every so often.  I do have a second "blog" for my personal thoughts and feelings. Things that don't need to be shared with the world around me.

I also don't post as often because a lot has changed in 10 months (shocking, right??).  I moved home in June of 2012 and finished out college commuting back to my college town.  I also took a few classes from home and held an internship at a local gym for the final two quarters of college.  Then, on Nov. 17, 2012, I graduated college early by two quarters.  *high fives all around*  Backing that time-table up about a month, I also started a "big girl job" in mid-October.  After I graduated, I went on a graduation cruise with my mom, and began working full time (8-5, M-F) the Monday I came back from my cruise.  Very exciting, very busy.

I also shifted away from the blogging world with my new job because, like a fellow blogger (Unknown Cystic), I don't want to put my career in jeopardy just because of my health.  The internet is an incredible thing, but has the potential to ruin lives.

I also recently turned down the chance to be a local "face of CF" as a part of a really great fundraiser locally.  I've supported and attended the gala they host when I'm able to, but this would have made me the key speaker and face in the media.  I was all for it until I was employed.  I'm sorry, but I just can't.  I was a recent speaker with my mom on the Mother/Daughter Perspective of CF for local CF families hosted by my clinic.  It was a great event and we had fun doing it.  It's on YouTube.

Speaking of YouTube, my work did a Harlem Shake video.  We're the first in our industry to do one and the other companies got called out by observers.  It was tons of fun.

Ironically, after noting that I would like to keep my job despite my genes, I'm home sick today.  It's the first full day I've taken off for feeling UGH.  Remember all that belly pain I've had since late elementary school? It still haunts me.  I actually had a recent colonoscopy to see what was wrong.  Verdict? "You have a normal colon. Nothing is wrong with you."  WRONG.  Just because we can't see or determine the problem does not mean nothing is wrong.  The highly respected doctor who performed the colonoscopy suggested it might be my diet.  I mentioned this to my CF doctor who scoffed.  "Doubtful."  Still back on square one, in pain and still "nothing wrong."

For the record, I cried before my colonoscopy many times.  Was I afraid? Was I in a lot of pain? No and no. I was HUNGRY.  I was waiting for them to put me to sleep and tears are running down my cheeks.  The nurses were great and worked to console me letting me know that there is nothing to fear and it will all be over soon.  I just looked at them through my teary eyes and said "I'm not afraid, I'm hungry.  I just really want to eat."  I'm not sure they quite knew what to do with me.

Think about it! I couldn't eat for 24 hours.  ME.  Or drink Dr. Pepper.  ME!! I had a lot of juices to choke down the solution to "clear me out."  I got so physically sick of sweet drinks that I started sucking on the cajun sweet pickles that my mom makes at Christmas time for some spice.  Sad, I know.

Recent doctor visit revealed that I would benefit from some IV antibiotics, but it wasn't an emergency.  I made a deal that she let me wait 6 weeks and be reevaluated because I was beginning playing soccer again and running once more.  I was making a serious effort to improve my cardiorespiratory health and I wanted to see if that would help before we made any decision to send me to the hospital.  I've been running every day since.

My running partner, aka the boyfriend, has been great.  When our work schedules allow us to run together, he meets me at the gym closest to me and we run.  He gives me the push to keep going without pushing me to a breaking point.  I've also lost several pounds over the last few months and he's declared that I'm going to eat as much as he does, if not more.  We'll see how that works out!

Speaking of the boyfriend, all is well in that department.  ("well" is the understatement of the century, actually.)  We're extremely happy and things just make sense.  It's nice when your best friend is also your boyfriend. :)

Speaking of friends, one of them (aka Emmons) is turning 21 in August and someone in her family got the great idea to have a serious celebration... IN VEGAS.  Come late August I will be flying out with her family for a 21st birthday party in Sin City.  I'm sure there's nothing that can go wrong.. haha!

Two of my other close friends are getting married in November.. on the same day... in different cities! Bummer! I'm very excited for them both and can't wait to celebrate with them!

On that note, I think that's all the updates I've got so far.  Well, I'm sure there are plenty more, but that's all I've got for today. One more reason I don't blog, before I forget: I spend all day at work at a computer.  I really don't want to get on my home computer once I leave.  It's just not appealing to me.

Ciao.

Nov. 14, 2011

Dear readers/glancers/everyone:

I apologize for being absent for about a month and a half. I either never knew what to say or didn't have time to type or just didn't feel like sitting at my computer any longer. I don't even really think I know what to say now, but here I am.

I had my doctor's appointment on Oct. 19. It went alright. My weight was up about 3lbs so that was fantastic. I go in for PFTs and after one blow, the machine breaks. So to be honest, I have no idea what my PFTs are right now. That makes me a little nervous, but since my first try was around my baseline, they didn't fret about numbers and sent me on my way. *whew*.

I think ultimately I will phase the blog out of my life for future employment reasons. I don't want it to negatively affect if/where I get a job. My thoughts and feeling about my health/disease are becoming more solid and detailed and I don't feel like they all need to be posted here. On that same note, I don't feel like my personal life should be available for all to read either, so I don't feel the need to post about it either. It's the same reason my facebook page is more barren than it used to be. Those who need to be informed, or who I feel should be informed, about my life will be. Everyone else will find out through the ever-informative grapevine.

I love my blog, don't get me wrong. I'm actually really proud of it. However, I just don't have the "bug" to keep up with it. I wish I did, but I have so many other things going on that are important to me or are demanding of me that typing up my feelings and thoughts and memories just aren't in the top tier of priorities. I would much rather be spending time with the people who are important to me.

I do have one more thing to write about, and I may be back from time to time, who knows. I wanted to write on the experience of moving in with 3 girls I did not know and trying to slowly introduce them to and explain to them my health "stuff" without being blunt or awkward or weird. It's an art. And while I have no real advice on how I did it, somehow it worked. I think the funniest moment was when one night I was doing the Vest and one of my roommates realized what I was doing. She knocked on my door and I shakily yelled "come in!" While she stood in my doorway she made a comment that made me laugh: "I want to touch you!" She then proceeded to dive onto my bed to feel the Vest and how it shook me. My other roommate then realized what was going on and ran into my room too saying "me too!!" and came to feel the Vest as well. After a few seconds of that, and some time of them begging me to talk while being shaken, they left. Still regularly, that first roommate likes to come in my room while I do the Vest and begs me to talk to her. I think overall my roommates have acclimated to me having multiple machines in my room and a million meds to take quite well, thankfully. I was really nervous at first, but alls well.

It's final week so I may or may not post again soon. I'm really not sure to be honest. We'll see.

-Andrea

Summer. Finally.

The quarter from hell is over. I literally have had the worst quarter so far. It could have been worse, yes, but man this quarter was rough. However, despite all that happened, I still ended with a good GPA!

Enough about the past quarter, it's time to move on. It's time for... SUMMER!!! So far, my summer has been pretty chill, which is how I like it. There has been a lot of Harry Potter Weekend watching. My latest project is going through all the stuff I brought home and trying to weave it back into all the stuff I had left at home and make it all fit. I did clothes first and I have a VERY large stack of clothing/shoes that is going to Goodwill. This is quite a project, but I've got several days to get it done. I also have a scholarship application due soon that I need to get a move on doing. And then come July, I move back to Ruston! So little time! The last thing I want to happen is by the end of June, I finally have my stuff unpacked and situated for living at home, and then I have to turn around and pack it all up again for my new apartment! That would happen to me, lol.

I ordered some CF Silly Bandz recently and they arrived!! I'm so excited! Hear me out, I've *never* had the desire to wear Silly Bandz before in my life. Never. Just never felt the urge to buy a pack to wear or see what the shapes are. But then one day I found the CF Silly Bandz and that was the day I decided I wanted to wear Silly Bandz, but only these. Check them out:
CF Silly Bandz

They compliment my CF Awareness Band from Fatboy quite nicely. My right arm is all "Cure CF"ed out.

Me? I'm doing well. Excited about the future and what it may hold. It's a good day.


-Annie

The Vest: Friend or Foe?

There are days when I finish the Vest and I want to give it a hug or a high five (if it had hands, of course). There are other days where the "minutes left" section seems to almost go backwards. Today is one of those days. I've had to stop it multiple times because my coughing is so extreme, I'm about to bring up the fantastic dinner I had. That, my friends, is a MISERABLE feeling. And I ate 2 hours ago. This was not a "somebody didn't wait 30 minutes after eating before swimming!" situation. This is just a "my Vest hates me" kinda day. Happens. Doesn't mean I shouldn't still use it. It just means today, I won't be smiling afterwards because I feel better, but more likely because I'm done! (2 more minutes.... almost there....)

Two weeks from today, so on May 18, I will be DONE with my sophomore year of college. :) But with every silver lining, there is a dark side: some of my best friends are graduating and moving away. :( Luckily, Skype exists so we can still help each other with what to wear when going out!!

(DONE WITH THE VEST FOR TONIGHT!!!!!)

So with summer so close, it just means finals are even closer. Oh boy. I can't wait. lol

Hope all is well with you. Have a fantastic day!
-Annie

Hello, 2011!

My first week back in school since the New Year has been pretty good. Busy, big surprise, but good! This weekend is going to be busy too with it being Sigma Kappa Parent's Weekend and our banquet.

Sorry for the short update. I'm sleepy still, I've got class soon, and I've got a lot on my plate including a test on Monday.

Here's a shoutout to CF Fatboy who had another sinus surgery yesterday. No update from him yet, but his wife said that they were home already, which was earlier than Fatboy expected! That's fantastic news.

Sorry for the short update. My next one should be longer.

-Andrea

Prayers for my brother's dog Beeker who is having her right eye removed today due to a tumor. Praying that the surgery goes well and the tumor is benign.

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

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.

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!

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!!

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

Boston Trip: recap!

My Trip to Boston/Plymouth with my mom and my sister-in-law, Sarah!

Day 1- Thursday August 5:

I woke up at 4:30am to shower, do treatment, finish packing, and then go pick up Sarah and drive to the airport. I'm not a huge fan of flying, but oh well. We get checked in and head for security. I checked in my regular bag, plan on gate-checking the Vest, and carrying on a backpack. As they check my bags in their scanner thing, it's no surprise that the Vest gets sent for hand inspection. *Sigh* I guess it does kinda look like a bomb in the scanner. There are a lot of wires! I go watch the man search the Vest and test it for "explosive residue." None, of course. I haven't been making explosives while doing the Vest... that's not really a good idea. My hands tend to get shaky... along with the rest of my body. Anyways, SURPRISINGLY, the man hand-checking the Vest asks if this was the machine that inflates and shakes me. "Yes sir." I was really in too much shock that a random African American man at the airport knew what this was. (I mention his race because CF is rare in African Americans.) I thought that was pretty cool. I gate-checked the bag and

boarded the plane. I sat by the window and Sarah sat by me. Across the aisle was my mom sitting next to a woman who looked mid/late 20s. We learned later she was going to a Twin convention! Her twin lives elsewhere and was meeting her there. We land in Atlanta, race across the airport, and get on our second flight. I got irritated because they do not gate check on these larger flights! So we had to figure out where/how to shove the Vest into the overhead compartments. That was a hassle!! But it was better than the airline employees throwing it with the other luggage...

Finally, we arrived in Boston! We grabbed our luggage and headed for the rental car place. Straight from there, we went to the JFK house! That was really cool. I enjoyed seeing how the house was set up and listening to Mrs. Rose Kennedy talk (recorded tour) about the things she remembers in each room. When it was time to leave, the rains came down!!

The streets were flooded and being out from under the umbrella for 2 seconds (literally) to close the trunk that Mom accidentally opened (LOL!!), I got drenched. It was wild. We drove to our hotel from there and got settled in. We had to fight for a fridge to keep the Pulmozyme cold because "somehow" the orders to send a fridge to our room (which we requested 3 times) kept getting ignored/lost/something. Finally, it showed up and Pulmozyme stayed cool. Our hotel was the Sheridan that was attached to the Prudential Center: prime location. From there we rode the T and headed to Quincy Market (Faneuil Hall) where we dined and shopped! That's where I took a picture in front of the giant Macaroni! There was also functional replica of the "Cheers" Bar and we stopped by there for a few. When it started getting dark, we went back to the Prudential Center and went up to the top of the tower and looked out over Boston. Day 1 came to an end.

Day 2- Friday August 6:

We woke up early so we could check out and headed out to Boston Commons, the Central Park of Boston, to enjoy the weather and eventually start the Freedom Trail. However, we were going to have to leave our car parked for most of the day, unable to check in at Plymouth until that evening. I still had to keep Pulmozyme cold. This is where my creative skills come in handy!! I had 4 fake ice cubes that were in a ziplock baggie with the Pulmozyme. Around it were multiple pieces of paper towels for "insulation." That baggie was in a baggie, the one that hotels give you for your ice bucket, full of ice. Around that were two more baggies like that that the nice cleaning lady gave us. Around that was another ice bucket baggie full of ice. Around that were two more ice bucket baggies. Here's a picture with the bag next to a normal sized hotel phone. Crazy, I know. We'll see how that story ends later. The Freedom Trail is a tour of special places in Boston that you walk to. You can either be guided as a group or guide yourself, which is what we did. You just follow the red bricks (or the map) and go to each location. It was really neat.

Stops on the Freedom Trail (bold means we visited them): Boston Common, Robert Gould Shaw Monument, State House, Park Street Church, Granary Burying Ground, King's Chapel, Old Corner Book Store, Old South Meeting House, Old State House, Boston Massacre, Faneuil Hall, Paul Revere House, Old North Church, Copp's Hill Burying Ground, USS Consitution, and the Bunker Hill Monument. We spent a lot of time at almost every place. I loved the cemeteries because it was so impressive how many people lived into their 70s, 80s, and 90s, even back in the 1700s. We did a guided tour of the USS Constitution, "Old Ironsides", which was really awesome. From there, we went back to our car and headed to Plymouth. We met some crazy drivers on the way! Little did we Southerners know, the emergency parking lane, aka the shoulder, is actually a driving lane... or so these crazy Bostonites think!! It was hilarious and scary all at once. We finally make it to Plymouth, sometime around dinner. We check into the Radisson and request a fridge. Instead of waiting on it, we go out in search of food. We found this tiny (and I mean TINY!! only 12 tables) Italian place and ate there. We headed back to the room for the night, and realized we still didn't have a fridge.... nor did we have any extra plugs! In this normal sized hotel room, there were 4 outlets, one being in the bathroom. One next to the bed, for the lamps/clock. One for the TV, and one with 2 lamps plugged in. I plug the compressor into the one empty slot with the TV and unplug one lamp for the Vest. However, when the fridge arrived, there were no available plugs. The service man had to go get a power-strip to accommodate everything. 30 minutes later, the fridge was cold and it was time to test my baggie ice-pack. I stabbed it open, poured out all the ice, found the baggie with the Pulmozyme in it and.... *drumroll* it was still very cold!! My super-baggie worked! And it lasted all day. I was impressed with myself.

Day 3- Saturday August 7:

We slept in a little this morning, and it was much needed. We started off our day visiting/touring the Mayflower II. It is a replica of the real thing and it was pretty neat. There were a lot of people crammed on that ship! Just past the ship was a dock where we discovered it was a prime picture-taking location. From there we visited Plymouth Rock. This is me squishing the rock. All of this was in walking distance from our hotel, including little shops and lots of food. We shopped around until it was time to meet Lauren! We met at the Cabby Shack, which had delicious clam chowdah. The 5 of us (Lauren and her man Kyle came) ate a large table so Lauren and I could keep our distance. I thoroughly enjoyed the lunch, with the only exception that I couldn't give her a hug!!

Even though I had literally just met her, because we've been keeping up with each other for a while now, I feel like we're old pals. :] This is one cyster who I plan to keep in touch with for a long, long time. We took pictures with/without our matching pink masks after lunch before we had to part ways. From lunch, Mom, Sarah, and I went to a plantation where they built a Native People village and also a settlement from the 1600s. These places had people walking around in costume AND in character. When we asked them questions, they answered in the language of that period and as if we were all there now. It was pretty cool. The English settlement was more realistic because it was bigger, more elaborate, and I didn't get hit on by the "actors" there, unlike the Native People village. Two of the guys were very eager to take a picture with me and Sarah, "two lovely Louisiana ladies!" After the plantation, we went back to the hotel where I read a book, Sarah napped, and Mom did some shopping. It was already kinda late, but we woke up and got dinner around 8pm at a local pizza place. We headed down to the jacuzzi to soak our tired bodies, but the pool was filled with lots of loud children that it wasn't very relaxing.

Day 4- Sunday August 8:

We got up a little earlier than most of the days on the vacation to load the car in preparation for the beach later on that day. We hit the road towards 2 lighthouses, a long trip due to the distance and the HORRIBLE traffic. There was apparently some bike race in town and traffic was nearly stop-go the whole time. What should have taken between 1-2 hours, took about 4. A waste of a morning, but it was ok.

We made it to the first lighthouse in Cape Cod. We got to go up in it and see out at the top of the lighthouse. It was a pretty cool deal. On our way to the next lighthouse, we stopped and got lunch at a little family-owned place. The beach of the second lighthouse was at the beach we had wanted to go to. However, the guy who was in charge of directing traffic around the parking area said that the wait in line to get a parking spot was *and hour and a half*. WHAT?!! He said that people get in line before 8am to get a parking spot at this beach. How crazy is that?! We got to park illegally for 10 minutes to go see the lighthouse and leave. We took that deal and headed down the road to a different section of really the same beach. You had to park a mile down the road and either walk or ride the shuttle to the beach. The shuttle stopped going at 5:30 and it was about 3 something when we got there.

Let me just say now, the weather was IDEAL. Sunny, maybe 80 degrees, but with a very nice and constant breeze. I took a nap for over an hour out there. It was fantastic. At the beaches down South, it's super hot and you just sweat to death because of it. Not where we were. Oh no. It was perfection at it's finest. The water, however, was a different story. 61 degrees. I put my feet in and screamed. TOO COLD!!!!!!! It was bearable after a while, but you had to get used to it first. My feet were numb for part of the time they were in the water, that's for sure. And there are no shells. Well, barely any shells. They have rocks instead. It was interesting. There was also this area between the really sandy area and the water where it was just a low sand area with water. It was perfect for little kids to sit in and play in the water without having to worry about waves. We watched a kid crawl around in it. It was adorable. The other major difference was that there were no condos or anything commercial. Just beach. It was really refreshing. Although it was way more crowded than I've ever seen any Florida beach, it was still worth the long car ride. We stayed later that 5:30 and walked the mile-ish hike uphill back to our car. Still worth it. That night we ate at the WeatherVane, where we had a coupon to, and I LOVED it. That night, we went down to the jacuzzi again and it was much more relaxing since the 2 wedding parties and the family reunion had gone home. Great way to end the trip.

Day 5- Monday August 9:

Another travel day. We loaded up the car and headed for the rental car place to turn the car in. On the bus from the rental car place to the airport, I realized I left my phone in the rental car. GREAT. Wasted another 30 minutes getting my phone back and cutting it tight on trying to make the flight, but we made it. While waiting to take off, the captain gets on the speakers and says something like "We have a slight delay. The spring on the cargo door is broken... it won't take long. They are just going to tape it shut and we'll be on our way." We cracked jokes the whole way about our luggage falling into the Atlantic due to a broken cargo door and the duct tape not holding at 10,000 feet. Sure enough, after we had switched flights in ATL and got back home, we realized we didn't have any luggage. COOL... this is why I didn't check the Vest in and kept it with me. (It got searched again at the Boston airport, by the way. This time the lady asked if it was an oxygen tank..... umm no??!) We got home around 4pm ish. My luggage made it home at 12:30am that night. It was not wet, so I assume it was just on a different flight and not in the ocean. :] Oh, also, on the flight from ATL to home, we ended up sitting with the Twin again on the flight back!! How funny is that?! We heard all about her trip and how her and her sister won 3rd place in "Most Alike"! I didn't even know they did stuff like that!

It was a great trip, if you can't tell!! I had a lot of fun! Here's one more picture to share: it's from the Prudential building. There was a Red Sox home game that night... look how packed the stadium is....

-Annie

Hot off the Press: ME!

EXTRA EXTRA!! Read all about it! Boston trip overview: currently put on hold. A more pressing matter has come up! Read on!

A few weeks ago, my dear author friend Betsy asked me if I would send her a little paragraph on what going back to school means to me. "Sure, no problem!" She asked me to throw in a little about my CF and how it makes going back to school a little different than everyone else. "Done." I thought I would end up seeing a link to an article in a few days. However, that's not at all what happened.

I get a phone call at 10 a.m. one morning waking me from a light sleep. "Hi this is Lora with City Life and I'm calling to see when you will be available for the picture for the article about Back to School by Betsy St. Amant." HOLD UP. First off, let me gain consciousness before I can even think to comprehend what you're saying. I was so confused, trying to figure out what this lady is talking about, all while trying to wake up. Picture? City Life? What is going on?! She arranges to come by my house that Thursday to photograph me. I sounded like a complete fool trying to give her directions. I'm pretty sure it came across like I don't know where I live. But, somehow she found my house that Thursday.

I doubled checked with Betsy to make sure this lady was legit and learned that Betsy's story was going to be the cover story for the City Life magazine that's sent out in my city every 2 weeks! COOL!!! It came out today and it is a great article, so please read it! Here is a link: City Life!

The article starts on page 14, the part on me and CF is on page 15, and the picture is on page 16! (If you're looking at a real copy, the pages are off by 1).

I'm really thrilled about how the article turned out!! It's so well written. Please take a few minutes to read it!

-Annie

ps I graduated in 2009, for those who noticed. :]

Boston Trip-- COMING SOON

I am tired! I have SO much to say about my Boston/Plymouth trip, but now is not the time! It will come soon (and hopefully so will my luggage... which got left behind somewhere, thanks to the airport)!

Until then, read Lauren's blog, where she tells about part of my trip: MEETING HER!!

Here are a few pictures from my trip to hold you over until the full write-up!

And these pictures don't even begin to tell the many stories!!

-Annie

My Tales of the Tanning Place

Today was a great day! It started with my mom and I meeting my nurse practitioner for lunch. No reason, just because. We enjoyed about an hour long lunch, just chatting! It was really great.

Mom and I had more errands to run, but first: off to the tanning booth. I've never been artificially tanning and I'm not really for it, but we were going to get those Mystic spray tans. Fine. I wasn't thrilled, but we're going to the beach on this Massachusetts vacation and we're both ghastly white. We get there, pay for our sessions, and Mom goes first while I watch their "How-to" video. While waiting, out of the tanning room walks my friend Betsy! She watched the video with me (as we joked about how difficult it looked) and soon I was ready to go... or so I thought. The best advice I got from others: HOLD YOUR BREATH! "Crap..." I think to myself. I can barely hold my breath 10 seconds. This thing will not be good.

I finally get to the room and one of the workers puts in my spray tan bottle and starts up the machine. "Welcome. Please insert your tanning spray and run your hand over the sensor." She didn't run her hand over the sensor, so I did it for her after she left. OOPS!!!! That's how you start it! I haven't undressed, done my hair up, taken off my jewelry, put on the lotion, or anything!!! I run to the other side of the machine and press a red button. "Purge starting." I have no idea what that means, but I'm panicking. I run out of the room.... "Umm.. I started it. And I'm not ready. Then I pressed a button." Epic. Fail.

I had to wait a while for them to reset the machine, throw away that bottle of spray tan stuff, and put in a new one. *siiiigh*. Boy did I feel stupid.

I was ready like 10 minutes later (or so it seemed) and stepped into the machine, clothes-less, hair in a net, lotion on my hands and feet, and those weird eye things for tanning beds on my eyes. NOW I run my hand over the sensor (at the right time). If you haven't seen one of these things, they look a lot shower stalls. I get in, close the door, and wait to be sprayed. GROSS.... soon the stall filled with the mist and every breath tasted bitter and was sharp. I was taking small breaths and soon felt winded and light-headed. I was very glad to get out of there! It only took a few minutes, but man... that was rough!

Now, the key was to not get wet for the next 4-7 hours. It's a beautiful sunny Southern day, I'm sure I'll be fine. What we didn't think about was the HEAT and how we started sweating. Not good! I think we avoided streaking though, thankfully.

I think I'm tanner. I think. My feet, the bottoms of them, are ORANGE! It's kinda funny. Check it out:

Haha! Shows off my arch nicely.

-Annie

No FB and a good book

So my facebook was shut off a few days ago: surprisingly a way less big of a deal than I thought. I haven't really missed it actually...

And instead, I've done a lot of reading! I just finished the 4th Harry Potter book and am about halfway through the 5th. I love these books and I'm really enjoying rereading them.

Today I got to see Carter for the first time in 2 weeks or so, and first time after seeing Kiarda. Wow is there a difference! It's crazy how much a difference 8 months makes in a baby's life. Wow oh wow.

I've been kinda anti-internet since FB shut down, actually. Which is why I haven't been posting much. I have gotten addicted to backgammon too! OH MY it's not healthy how much I play. Haha! I love playing against Mom, she's really good. She's the one who taught me how to play and the strategies of the game. I'm totally bringing this old school game back to college with me. Thank you Zenpep points!

Ok. It's currently Tuesday night. At 5:45am Thursday, I LEAVE FOR BOSTON!!!!!!!! :]]]] I'm super super duper excited. I won't have access to a computer while I'm there so no blog updates until I get back, but with it will come a picture with me meeting Lauren!! This trip is going to be fun! I can't wait!

I had mentioned a few posts back that I moved the Vest to the morning. I also moved Pulmozyme to the morning too, since those two go hand-in-hand. I like the results. I think I might need to add a second Vest treatment to the evening, but I definitely need it in the morning too. I get a lot up and out with the morning CPT.

Night!

-Annie

Countdown to move back to college: 26 days!!!!

Gut problems: day 4

STILL SICK.

I ate lunch today. That's it. Do I feel hungry? Not in the least. I actually feel like I ate dinner about an hour ago. Not stuffed, but not wanting to eat. And Dad even cooked potato soup, which I LOVE!! Luckily there are plenty of left-overs for when I feel better.

I've been having serious issues with waking up. Not sure what's up. It's amazing how long I can sleep. I'm about to try it tomorrow. Because of how miserable I've been, I'm sleeping in tomorrow instead of going to church. I'm going to try and get as many hours of sleep in tomorrow as I possibly can. Let's play the game: How Long Can Annie Sleep? Any bets? I'm thinking 11 hours and I still wake up tired. I'm going to go to bed at midnight tonight (finishing treatment now) and wake up and get out of bed whenever. No alarms, nothing. The dog will wake me up, but with the way I've been sleeping, it won't phase me in the least. I'll pass right back out. It's almost like I'm sick, but side from the gut stuff, I don't feel sick. And the gut stuff is not normal sick, it's "me sick". Which isn't really sick! Man oh man this is complicated.

I caught up with an old friend of mine! Lucy became my friend in kindergarten, back when everyone thought we were twins, and stayed close until she went off to a different high school and college. We grabbed some Starbucks and sat in a park and caught up today... it's like we were never apart! She really brightened my day! Thanks, Lu. :]

Almost bed time!

-Annie

Reasons to wear a medical mask (LIKE MINE!!!)

I ordered one of those fancy "stylish masks" (link) and it FINALLY came in!!

It was ordered specifically for my trip to go see Lauren(!!!) but I'm also now using it for other mask-wearing occasions such as:

• Clinic
• Around my mom because she's sick
• Around my nephew/niece when I'm sick so they don't get sick
• To scare my dog
• When I'm doing serious cleaning because the smell of the chemicals makes me sick
• When I'm in the hospital

Lauren actually found the site and we've both ordered one! I am going to start a trend at my clinic to see if we can get everyone wearing these fashionista masks!

-Annie