Afflovest-- my opinion

Since I'm rocking some newer hardware, I felt I should give my honest opinion of it.  Please know a few things: 1- no one is paying me for this. 2- My opinion is just for information.  I do not have a medical license and my opinion should not affect you or your health decisions. 3- What may be right or wrong might not be for you.  Please get with your clinic before making any changes.

Here we go!

AffloVest
Basic description: This is another "vest" chest percussion device.  It houses the controller on the user's left side in a pocket and the battery on the user's right side in another pocket.  I have a size "small" and it has 3 adjustable clips in the front to latch it.  It also has several (4 or 5) two-button adjustments in the shoulders to fit the correct length.  To put simply, it is cordless.

How it works: With a charged battery (which lasts approximate 3 hours of usage), the vest is turned on by holding down the button with the symbol for ON (one you often see on computers).  It will boot up over about 5 full seconds.  From there you can run the set program by pressing GO or run whatever setting has been left up by pressing the PLAY button.

You can set a program by using the down arrow until you select Program.  This will bring you to a screen to edit the three Sequences it will cycle through on your program.  I like this because it allows me to set different types of therapy without having to think about it.  Each Sequence can run for a max of 15 minutes.

What the buttons mean:
P- Percussion. This setting vibrates for 1 second on, one second off for the full run time.  This is my favorite setting.
V- Vibration.  This is a solid vibration for the full run time.
D- Drainage.  This targets the lower lobes first, alternating front and back, and vibrates up in different areas.  The idea seems to be to knock crud loose and work it upwards.  I bet this is even more effective when the user is in a downward facing drainage posture.
Three bars: High intensity
Two bars: Medium intensity
One bar: Low intensity

Your mode and intensity can be adjusted at any point during the therapy session.  I saw a "lock" symbol when I set a program, which makes me wonder if it can be locked for kids so they don't change it up.  I haven't opened the flashdrive they sent with instructions, so I don't know for sure.

What's included:
When you get the Afflovest, you get a roller storage bag, the vest with connected controller, one large battery, a battery charger, and a wall cord.  The batter charger plugs directly into the wall and the battery to charge it.  The Vest cannot be used during this time.  They do have a wall cord though.  This can be plugged directly into the wall and the vest for usage when your battery is dead and you really need it.  Obviously, you're bound to the wall at this point, but isn't that what we're all used to anyway?  The cord is fairly long so you can sit on a chair or couch.  They also include a flashdrive of information.  I have yet to open it.

Now the part you've really been waiting for... Pros and Cons

Pros:
-I love the freedom.  I love being able to walk around, cook dinner, dry my hair, put on makeup, etc. while I do my therapy.  The vibrations are different than a typical air-filled vest, so it's not as violent to the entire body.  The vibrations seem deeper and more focused than the air-filled vests, which seem to just try to shake things up without understanding the concept of directional vibrations.
-I like the ease of being able to set the program.  I'm pretty tech savvy but I always struggled with the other vests to set cycles.  I just ran my time on my one setting and that was it.  Now, I feel like I have more freedom with my therapy.
-It works. I'm clearing up some crud. I can feel it makes a huge difference in my day. That's what matters the most in the end, right?

Cons:
-It's heavier than I anticipated.  Mine is 11lbs with the battery.  Sometimes that's hard for me to put on, or I become winded putting it on, but once it's on it's fine.
-The battery doesn't warn you it's low unless you're looking at it.  It just flashes.  I haven't had it die on me yet, but I'm sure it will eventually!
-I wish the programs could run longer than 15 minutes, but that's just me being picky.
-This pairs with the weight, but I expected it to be easier to carry with me when I travel.  It's still easier than the other Vest, but it's just not what I expected.  I'm used to the flimsy vest that I could fold up and pack away (though paired with a big machine), but the Afflovest has the machine built in, so it doesn't fold or pack away as easy as I had hoped.  Again, still easier than other options.
-For flyers: it has a lithium battery so the battery cannot be checked. It will have to be a carried with you.

I hope this helps!

-A

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.

*sigh*..... Apologies and Excuses

So I've been very MIA and I apologize. I've not felt inspired to write. I've been a little down and feeling kind of couped up in my house. It's not that I don't enjoy my family time or I don't like being home, but when you've lived away for an extended amount of time, it's hard going back. I've also had trouble with the idea of summer where you do "nothing." As a CFer, I feel as though doing "nothing" for an extended amount of time is a waste of my precious time. Being bluntly realistic, and maybe even too fatalistic, but I don't have as much time to kill as my peers. They all have probably a good 20 years on me in the long run, at best, and I find that wasting a few months of "down time" is excessive and extremely frustrating. I cleaned the house one time. Not just dusted here and there. I SCRUBBED floors and made the house shine. I felt like I was actually doing something of value. My summer would have not been so frustrating had I not just been in summer limbo between Spring Quarter and the classes I was going to take in July (which started today). It wasn't enough time to get a job and it was time to repack for my new apartment just as finished unpacking. I, honestly, had fallen into a rut of mild depression. I would cry sometimes because I was so miserable doing nothing.

I had a doctor's appointment this past Tuesday, July 5. It didn't go well. During my rut of sadness and frustration, I neglected most things health-related. Well done, brainiac! So now, not only am I recovering from being upset, I'm not feeling well either. A downward spiral for sure. My doctor looked at my numbers and just flat out asked me... "what happened?" Then the tears began to flow. I just told her everything, about how lonely I was, how my break-up last March has taken a toll on me, how I hated being so bored, how I neglected my meds to be in control of something in my life, etc. etc. etc. With her understanding that these results were self-inflicted and not just me being sick for no reason, I was granted oral antibiotics for 3 weeks instead of IV ones. However, I go back in mid August for a re-test of PFTs. I'm about 85% back on track on everything as of right now. I'm trying, I really am. Habits are hard to break, especially bad ones. I'm also on a pill to make me hungry because my appetite has dropped significantly and I've lost 2lbs over the last few months. Bad bad bad.

I'm getting better though. I'm back in my college town with new and old friends and finally school! As much as I hate my 8am physics class, I feel like I have something worthwhile to do. I have a purpose again and something to keep my mind occupied. TV gets old really fast.

Also exciting, I'm going on a mother-daughter Dallas trip this weekend, Friday-Sunday including Six Flags and shopping! I finally feel like my mom has become more of a friend figure who I can talk to instead of an authority figure and I like that. We get along these days. I like finally being respected.

Sorry for not posting forever. I really would pull up a new post and just stare at the screen, feeling completely unmotivated to type. Even when I had things to say, the words wouldn't come so I just closed the screen.

Things are looking up. After having a very rough spring, and a frustrating summer, I feel there is only good ahead. I have hope, and that's a good thing.

-A

Summer, goals

Well hi! MIA as usual, my apologies.

I'm just enjoying my summer days before I head back to school in July. I'm almost completely unpacked (ha! Said it would take until half of June) but I've been doing other things too. I finished my scholarship application, turned it in, visited friends I haven't seen in what seems like forever, spent quality time with family, reread the 7th Harry Potter book (since the movie comes out July 15), and shopping for my new apartment. So while I've been busy, it feels like I haven't done much at all!

---------------
Goals. I have been told all my life to set goals for myself. I have avoided admitting to making goals for the fear of not reaching them. However now, I see goals in my future that I'm striving for whether I reach them or not.
I reached one goal after my freshman year of college: stay out of the hospital for my first year! I managed to stretch my accomplishment over my second year of college too. My new goal is that I can stay out of the hospital all my college life, including grad school. It's going to take a lot of work, a lot of perseverance, and a lot of doing stuff I really don't want to do. But this is my goal and it benefits many people, not just myself. Do you have any idea how hard it is to fight for people who aren't even a thought yet? My future family is far from being created, but I'm fighting every day to spend time with them. An RT once told me that when I do treatment, I'm not fighting for today, I'm fighting for tomorrow. I'm fighting for my kids' first days of school, for their soccer games, for their graduations and weddings and their kids too. I'm fighting to have those moments with THEM, not to have more time for myself. See the difference?
From this side of the screen, it seems like people who already have their families have an easier time fighting because they have eyes to look into and think to themselves "I'm doing this for you." I've been trying to do that with my niece and nephew. I want to be around to be their aunt for many years to come. I want them to see me live a wonderful life of many years with them. I don't want them to grow up and remember me as the aunt they don't remember so well because I passed away too young from some terrible disease and they didn't know me very well. That would be my life's regret. The same goes for my kids one day. I NEVER want them to say that they don't remember their mom because I passed away before they really knew me. That's why I'm fighting. That's why pictures of my niece and nephew are so dear to me. Those are the eyes I look into right now and say "I'm fighting for you."


-Annie

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

Benefit of having CF

So of course the most obvious main benefit of the common CF patient is the ability to eat whatever and not be the size of a house. My body and I decided to take full benefit of that "gift" from CF and I eat WHATEVER I want at any hour, and fight to put on the pounds. However, that "gift" sits at the top of my list tied with another: my abs.

I have mentioned this before, but it becomes ever more obvious during swimsuit season and since I've been coughing more lately. My abs and my back are ripped and I love it. If I'm wearing just a sports bra and some sweat pants, I look like I should be in a work-out video as the trainer. Y'all, I'm PROUD of my body. Ask 100 other 20 year old girls that and see if you can ever get that answer again. Having CF has definitely gifted me with a strong and healthy-looking core body that I'm proud of.

Also, school ends WEDNESDAY then I'm home for until the start of July. Then back to school.

See you on the other side of finals!
-Andrea

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

Health update + family time

My doctor's appointment was on Tuesday and my sinus infection was dying down, but I was still concerned. However, my numbers were, even to the hundreth (0.01) decimal place, the EXACT same as in January!!! That's huge! I'm thrilled. My doctor and I looked over my PFTs for the last 4 years, and I have been between 60%-80% and overall very consistent. She is thrilled with my overall health over the last several years (really, my whole life) and how even with so many changes (ending soccer, going to college away from home, growing up, etc.) I've stayed healthy and consistent! I've got CF on lockdown, yall.
I did lose a pound, but we contributed it to my antibiotic which has seriously curbed my appetite lately. They're not worried about it.

I went home for Easter break and have enjoyed all of my family time! I've hung out with Carter and the newest edition to our family, my cousin baby Louis! We've dyed eggs, Carter had an Easter egg hunt, and played a fun game knowns as "Laugh Your Face Off." (Anjea, it has to do with words/drawings similar to pictionary and you have be banned from playing it with us!! lol just kidding)

Only 4 more weeks of school, then SUMMER! I cannot wait. I don't think I'm ready to move home, I like living away actually (oops, mom don't read that!), but I'm definitely ready for a break. I'm taking summer school in July and moving into my new off-campus apartment on July 1st. I think a month at home will be nice. I'm doing a little bit of travelling during June too, (New Orleans, California, etc.) so it won't be just a month of being home, bored.

Oh, more family time! Just got invited to play some cards, one of my favourite family activities. Probably a wild game of "I Hate This Game" is about to break out. Always fun! :)

Have a nice Easter everyone!
-Annie

2 Years!

Dear friends,

It has been right about 2 years since I've been in the hospital. My last IVs (at this time) were for my sinus surgery/post-surgery pneumonia if you want to even count that as IV treatment. If not, then the last time for IVs was in NOVEMBER of 2008. WOW!!!

I just wanted to post that because it dawned on me today that the end of March was that milestone. How exciting!

Thought I would share in my excitement!

-Andrea

Body talk

So as of late I've become more aware of my body shape/size compared to my peers. It helps that other people like to comment on it too. Don't take me as vain, I'm not, but it's nice knowing that my good and bad genes are working together to create something that isn't half bad!

I'm the friend my friends like to dress up. Seriously. I'm the Barbie of some of my friends. It's actually really fun though. I'm the size of most mannequins, seeing as I like to take the clothes off of the mannequins and buy them! I'm thin, not too thin, and actually have some shape and character to my body. I'm not a twig (anymore). Finally, FINALLY, I like my body.

The only thing I don't like is my lack of muscle tone, but guess who just started doing circuit training again!! Oh yeah, I'm getting those legs back. Can't wait.

However recently I had a bump in the road. I went to a store, that shall remain publicly nameless, to find a dress for meetings. I found a really cute one, grabbed the small, and went to try it on. It was way too small for me. It also came with a belt that wrapped around the smallest part of the waist: I couldn't clasp it.

Hear me out: I'm a size 3 and couldn't fit into a SMALL at a normal store that I have bought clothes from before. I was livid and gave the store a piece of my mind. I didn't fuss at the employees, it's not their fault, but I stood outside of the store and fussed to the general store opening. Pathetic, maybe, but think about it for a second: if I was a "normal" 20 year old girl, I might have serious body image issues and might feel I'm too fat, since I can't fit into a small, despite the fact that I'm a size 3. It's moments like those that feed the body image problems of anorexic girls. Touchy subject, but it is a REAL subject and a REAL problem. And putting me, and girls my size, into a medium dress may not sound like a big deal, but even I was embarrassed for myself. It took me a minute to come back to reality (that maybe the dress was shaped different that I am, that maybe it was labelled wrong, that maybe it was just that style of dress, etc.) but that minute was long enough to hurt my feelings! And I'm TRYING to get fat!! Just think, for just a moment, how if that scenario can mess with MY head, how much damage it can do to a young lady's mind who already has body issues. Yeah, now we're on the same page.

Enough body talk for now.

Have a great day. :]
It's FRIDAY!
-Andrea

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.

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

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

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

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

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. :]