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

Monday, April 18, 2016

A little redneck ingenuity saved the day...

So on a fairly regular basis, I travel for soccer.  I coach some high-school aged girls on a club travel team and we travel the state, and a few neighboring states as well, on the weekends.  Sometimes Andrew joins me, but not always.  This weekend, he came down to the state capital with me because we had plenty of time to kill between games (8am on Saturday and 1pm on Sunday) and I wanted to spend it with him! And boy am I glad...

We got to the hotel on Friday around 8pm.  Andrew left to go get food and we munched in the room while watching TV.  Around 9:35 I'm getting ready for bed and to start treatment since I have an early morning (need to be at the fields by 7am).  I unpack my travel machine and my heart stops.... I have no tubing.  Suddenly, my chest feels tight and I don't know what I'm going to do.  Andrew was very quick to step up and remind me that he will find a solution and it's his job to take care of me.  He put his shoes back on and left without hesitation.

He started driving towards the nearest Walgreens and I called the other one in town (we're actually in a town outside the capital).  Time stamp: 9:43pm.  They tell me the pharmacy is closed and they don't have what I'm looking for.  I begin to cry and ask them if there's any other place they can think of that might carry it.  They suggest Walmart.  I'm texting Andrew to let him know.  Little did I know, he was on the phone with his dad (a nurse) who directed him to Walmart for other reasons...

I call the local Walmart and sob to the nice girl on the phone.  She said the pharmacy closed at 8pm, but she will go look outside of the pharmacy... no luck.  We talk for awhile and she is starting to freak out with me, understanding the severity of the situation.  Her advice was to go to the hospital and ask for one.  I thanked her and called Andrew.  He was walking into Walmart that moment, but wasn't heading to the pharmacy.  He was headed to the aquarium section!!  After some time, he returns to the hotel with these items:

25 ft. Aquarium tubing (what pumps air into fish tanks)
A pack of lighters
A pair of scissors

He cut the tubing to make it a manageable length.  We rinsed it out through the sink too.  The tubing was just a little too small to fit on the compressor/neb so we used the lighters to soften the tubing and stretch it out with the hotel pen.  Then, when it wouldn't stay on the neb, we put a zip-tie around it so it wouldn't go anywhere.  With a little bit of Redneck Ingenuity (or Macgyver!), I was able to do treatment that night/early morning.

The next morning, we called a local pharmacy and bought actual compressor tubing, but hear me out friends: should you ever run into a bind like I did, just pick up those items at Walmart and you'll get through the night!

Pics for proof:
Neb with tubing and a zip-tie to keep it in place.

The aquarium tubing Andrew bought

Very thankful for my creative and quick-thinking father-in-law and my husband who is willing to do anything to keep me well!  


Thursday, March 10, 2016

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!

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

-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?

-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!


Saturday, February 27, 2016

One Year in our New Home!

Just thought I'd share really quickly-- we've closed on our house a year ago today! Since then, we've made several positive changes (remodeled a bathroom, painted rooms, rebuilt a cabinet, etc.) and I'm very happy with where we are in our lives.

New challenges as we continue to move forward? Paying for medicines... but that will be another post for another day.  Thankful for resources and a mom who is doing a lot of leg-work for me.

Have a wonderful weekend!


Saturday, February 13, 2016

New Vest!

Some of you have been with me long enough to remember this post about my Vest, where I gave it some love.  My more recent friends might only remember this other post about my Vest where I wasn't sure if we were friends or not.  Either way, my Vest was always around giving me grief and giving me clear lungs.  But now, I can retire it because it's time to make room for a new Vest... the Afflovest!  There's no question: we're already BFFs.  When I learned that this Vest might be a real option (around October 2015), it was already a part of my day.  I thought about it LITERALLY every morning.  Any day that I overslept and didn't have time for a morning Vest sesh, I thought about how I could at least get in 10 minutes of the Afflovest while I dry my hair and let the dog out.

If you haven't heard of it, I recommend checking out their website and the YouTube videos posted by people who got the Vest and are demoing it.  The biggest advantage that it brings is I'm not hooked up to vacuum cleaner hoses, but free to walk around with the cordless technology!  It doesn't use air, like the old Vests do, but more true vibrations.  It has 3 settings, Vibration, Drainage, and Percussion (my favorite).  Anyway, not trying to do a promo for them, but I had to share in my excitement.  I mean look at me! I've never been so happy to wear a Vest!

In other news, not much else has changed.  Soccer season just picked back up, I'm singing in the adult choir at church (as I have time), and Zoe is still obsessed with the ball.

Oh! One thing I did was sign up for the Rock CF Kick Backs program.  It's an awesome group of people who, as part of the Rock CF Foundation, provide new tennis shoes to CFers who want to get running or need a new pair from running so much!  It's a really awesome program and I was THRILLED to get my tennis shoes.  Got to keep working hard to stay healthy!

Have a great weekend and a Happy Valentines Day!

Monday, September 7, 2015

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!!

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.

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.

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


Zoe joins the Family!


Andrew's Injury

New Home/Car

Morgan comes to visit!!

Construction has begun..

 Thanks for catching up with me!


Monday, April 22, 2013

I spoke too soon.. Vertex update


This is a great article.  It explains things relatively simply (maybe only mildly because I understand the lingo) and touches on everything from the stock jump to the study results.

I'm pleased. Yes, just pleased.  I'm petrified.  But ecstatic.

Did you watch Zero Dark Thirty?  At the end of the movie, when the red haired lady was in the plane and had accomplished her goal that it took most of her career to do, what did she do?  She cried.  The thought running through her head is "Now what?"  That's the best way to describe finding a cure.  Now what?  Everyone is always saying "be excited! Live your life! You have a cure, or something so close to it!" And that's more amazing than I could ever describe in words, but I've literally wanted a cure since I was old enough to understand what was going on... so then what?  It's ok if you don't get it.  You don't have to.  But I do.

However don't mistake this feeling for disappointment or unhappiness because it is the total opposite.  I couldn't be happier.  But I'm terrified.  Just know that.


Thursday, March 7, 2013

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.