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Showing posts from 2013

One of the best days

I had one of the most amazing days of my life this week.  I was selected to be highlighted at Gilead's annual sales meeting to represent a patient using Cayston...so I had a camera crew at my house on Tuesday filming and interviewing me.  Sorry Facebook friends, you all have seen these pictures, but here's a bit more detail about the day.
The crew was supposed to arrive at 9am, but unfortunately a few of them were stuck in Chicago and didn't get to fly in until Tuesday morning.  So we ended up starting around noon.  The hair and make-up gal, Erica, came in first to get me started.  They wanted to film me doing some of the things that I enjoy doing, so we started with riding my bike.


Next, rather then heading to the gym, we just went upstairs to my treadmill.

And for my final activity - it had to include my family!!  Will and the pups joined me in the back yard for a game of fetch.  The pups didn't exactly cooperate, so it will be interesting to see how the video and …

I ate a banana and other fun stuff

As my title says, I ate a banana.  This may not seem like anything special to most people, but to me it is a first.  As far as I can remember, I have never liked bananas nor anything banana flavored.  I recall trying them and not really enjoying the taste, but most of all the mushy texture.  But lately I have been trying to eat healthier so I have been stocking up on fruits and vegetables to snack on, rather then my favorite thing in the world - candy.  Last week, I decided to slip a banana into my cart at the grocery store.

Long story short, I tried it and actually liked it.  The texture had to grow on me, but I am shocked to say, I have now eaten FOUR bananas!!!!  Crazy!  I still don't imagine that I will like banana flavored things...like runts, but I won't stick up my nose to a banana any more...as long as it isn't overly ripened.


Also last week, I had a CF appointment.  I was anxious to see my PFTs now that I have been on Hypertonic Saline for about 6 weeks. AND...dru…

Med School

I happily had the opportunity to join my doctor on Monday to present to first year medical students - and of course the topic was...CF!  I joined her last year for the presentation, so I was very excited that she asked me to join her again.  She covered all the medical stuff like the history, epidemiology, and treatments.  Its pretty cool hearing all the nitty gritty scientific CF stuff...I love it.  Then, Dr. Forseen shared some statistics, which I always enjoy:

The oldest CF patient in the CF registry is 82!
The oldest patient at my clinic is in her 60s.
The median age for survival is 41.1 years!  Woohoo...I love seeing that number go up!

Those were my favorites that I could remember :)

After Dr. Forseen finished her presentation, she invited me up so the students could ask questions.  And they did!!  I got to share about how CF has impacted my life, my treatments, my diagnosis, and what happens when I don't take my enzymes...lol.

It was a great experience for me and I hope t…

Gee, thanks

Rather then trying to play catch up on the last 10 days of thanks...let's just say I failed at my attempt.  But in the spirit of thanks...

I am thankful that I have a husband that loves me.I am thankful for my family, though I wish I could see them more often.I am thankful for my truest of true friends.I am thankful for my sweet Sarge and sassy Stella - I can't imagine life without them. I am thankful that I have a roof over my head and food on the table. I am thankful that I get to love and be loved.I am thankful that I have opportunities to give back. I am thankful that I can make a difference.I am thankful for the blessings and the challenges that come my way.I am thankful to be me.

I hope everyone had a wonderful Thanksgiving and got to spend time with those you love.  We hosted this year and had a wonderful day.


Catching Up

I'm so bad at this, perhaps I shouldn't commit to doing this next year!

Day 13:  I'm thankful that I get to participate in a CF study again, I enjoy being a guinea pig :)

Day 14:  I'm thankful for a relaxing day!

Day 15:  I'm thankful for time with my sorority sisters \^^^/

Day 16:  I'm thankful for a day with my bestie :)  We went shopping just the two of us and had the best day!!

Day 17: I'm thankful my hubby made it home safely from his trip!

Day 18:  I'm thankful that I got to have a girls day with my mom and aunt.  We have so much fun together :)

Day 19:  I'm thankful for another girls day with mom and aunt Arlene!

Day 20: I'm thankful for lazy days...yep, still in my PJs at 5pm :)

HTS Update

Well, sadly I have already missed a few days - oops!!  But, I'm back on target :)  We did some traveling and surprisingly, I managed to do my treatments, but when I got home, I forgot!  I went for 8 days straight, then missed 3.  Here's my evaluation:

Time:  I don't like that it takes 15-20 minutes to complete one treatment.  But, I have very little patience when it comes to treatments - I wish everything could be pill form.  Although I am using the e-Rapid, I don't know that it is necessarily faster.  (*John and other HTS users - how long do your treatment last?)

Equipment: Again, I use a slightly different handset then most others.  I do notice that I get a lot of moisture build-up inside the handset (more then Cayston) and when I give the handset a shake, it dribbles out on me.  Also, after about 5 minutes of use, the fluid is below the receptor area (not sure the technical term) where the liquid gets converted to a mist.  So, the rest of my treatment, I continue sh…

Catching up on my thankfulness

Day 4: I'm beyond thankful for CF supporters and fundraisers!!  Without you, we wouldn't be making such great strides :)



Day 5:  I love this lizard that lives on our back porch.  He likes to surprise me sometimes by hanging out on the screen door handle!! LOL


Day 6: Petsmart rocks!! When I have lazy days, they are wonderful at bathing the pups for me :)  And they even got a cute bandana this time!


Day 7:  Sirius Radio :)  Taking road trips is so much more enjoyable - I will NEVER have a vehicle without it!

Day 8: Spending time with my brother-in-law and his girlfriend.  We spent the weekend in West Virginia with them and had a great time!


Day 9:  Football!  Who would have thought!!  Love going to games and getting to enjoy the whole experience!


Day 10:  Being able to sleep on the drive home and recover from the game :)


Day 11:  I'm thankful that there is a day to honor our Veterans.  Thank you to all that have served and are serving!!



Day 12: I'm thankful for my home.…

Day 3 of thanks

I'm thankful for a beautiful fall day...and so are my pups, they got to play outside (and get in trouble!)


Giving Thanks and HTS

Well, in keeping with my tradition of 30 days of thanks during the month of November, I shall start on day 2.  However, this year, I'm going to keep it simple and do a picture of what I'm thankful for.

My first 2 days involve this guy:


Day 1:  I'm thankful for Date Nights.  Even after 7 years of marriage, we still have date nights and get dressed up to go eat and or do something just the two of us.  <3

Day 2:  I'm thankful for football days with my hubby.  Like today, we ran some errands in the morning then spent the rest of the day in front of the TV watching college football and eating junk food :)


Also today, as I set out to do...I started my Hypertonic Saline (HTS)!!! Woohoo!


Man, this stuff is STRONG!!! Feels like I'm breathing in the ocean.  A few deep inhales led me to coughing.  I won't lie, I couldn't keep my mouth on the mouthpiece the entire time...I had to take a break because it was just too potent.  I meant to see how long it took for a tre…

CF Appointment

Wednesday was the day.  I was rather dreading it because I knew it would take forever due to all the annual tests that needed to be done.  So, I dragged my mom along with me :)  There was a day that she never missed an appointment, but now that I'm a big girl, I go by myself most of the time.  So, it was nice to have some company this time.

The day started at 8am with my oral glucose test.  And of course, my veins wouldn't cooperate, so I had to get stuck twice just to get the first drop of blood :/  They took 11 vials that time...checking my vitamin levels and all the other "stuff" they look for.  They changed the drink from orange to fruit punch! I don't get why people complain about having to drink that drink...its not bad.  Yes, its a little thicker and sweeter, but it by all means in not horrible.  I chugged my 10 ounces and away I went :)

So, from there, I headed over for my bone density scan.  I got there early and they took me right back!  As always, that…

The calm after the storm

I feel as though the past few months have been a roller coaster.  Constant ups and downs, sharp curves, and even getting flipped upside down.  I'm exhausted and emotionally drained.

I'm praying that life will slow down now and I can get back to being me.  In the midst of all the craziness of life, I decided to resign from my job.  It was a very hard decision to make because I truly enjoyed working part time and loved the people.  But,  I wanted to be fair to the company.  They had been so generous with allowing me the time away from the office to help with caring for my family.  I didn't know how long it would take and I didn't want to take advantage of their kindness, so I resigned.

A perk of my new found freedom, I decided that I would take a road trip, all by myself!!!  I loved it!  I drove up to visit my brother, sister-in-law and nephew in Indiana.  It took me about 10 1/2 hours and I only stopped once :)  I had the joy of staying there a few days and getting som…

Until I see you again

I've been absent from blogging lately, but wanted to share some news and dedicate a post to my grandmother, which we call Munner.

My sweet Munner passed away this morning after battling cancer since early this summer.  Well, I believe she won.  She is now home with the Lord and getting to catch up with all the loved ones that have gone before us, especially my Granddaddy.

Munner was a strong, dedicated, smart, and spiritual woman.  She loved her family and she loved the Lord.  She was the epitome of a southern belle!  She could fry chicken like no other and man, did she make some amazing mac n' cheese!!  She tried to teach me her tricks, but sadly, I was never able to master it like she did.

I'm beyond fortunate for the time I had with her these past 20 years.  I miss her terribly.   Love you, Munner!!!


Life

Life gets in the way sometimes, don't you think?  There are things I want to do and mean to do (like update my blog), but then I get distracted by Life.  Good things, bad things, and things in between.  So, here's a little update on what's been going on.

We've had a house guest the past four weeks, actually a patient :)  My stepdad has been staying with us to recover from his 5 week hospital stint.  Thankfully, I'm happy to report he is doing extremely well and almost back to his old self.  I got to play nurse and administer his IV antibiotics, flush the PICC line and keep up with all his meds.  I rather enjoyed that!  I even cooked a lot of meals for us all.

Since life was so crazy the past 9 weeks with the illness & recovery, I decided to resign from my job.  It was a hard decision to make because I really enjoy where I work.  Its only part-time, but it gets me out of the house and helps me use my brain.  But I am very fortunate that I have the opportunity to…

Hello?

I'm back!!!

Unfortunately, I've been MIA due to some family medical stuff.  We had quite a scare with my stepdad.  Thankfully, he is out of the hospital and recovering!  He will be staying with Will and I for a while so we can help nurse him back to health.


I never thought about losing a parent before.  As I grew up, I lost my grandparents and understood that I would have to worry about losing others as they too got older.  But, I never imagined being 30 and having to think about a parent leaving my life.  What a scary thought.  It definitely got me thinking.

Life is precious.  I can't sweat the small stuff.  I shouldn't worry about stupid things that really don't matter.  You never know how much time you have left in this world, so enjoy every moment that you can.  Have fun!  Let those that you love know that you love them.

I am not done with my parents.  I still need them ALL.  I don't think that will ever change though.

Signs?

As I previously mentioned, I became an aunt (again) last month.  Therefore, I have been doing some shopping in the 9 months leading up to these precious babies....some online.  So, I have been receiving baby stuff in the mail, as expected.  However, I didn't expect to receive baby formula and a "congratulations on your baby" package!!

I chuckled about it and passed the formula on to Brandy :)  Then, a week or so later, I received some coupons and a postcard reminding me to set up my registry at Babies R Us.  What?!?  I laughed more and passed on the coupons, but of course didn't set up a registry.  I started wondering what in the world I did to get this stuff...and I still have no clue!

Oh, but it was only the beginning!  Since this started back in May, I have received another package of formula, several coupons for formula, some coupons for birth announcements, and a few magazines for parents and babies.  Oh my!!  Is this a sign that we should have a baby?


To be c…

CF Stuff

CF Appointment:
I had my CF appointment on Friday and I'm happy to report, I'm doing well.  PFTs are up a bit from last time:  FVC = 97%; FEV1 = 87%; FEF25-75% = 59%

My small airways are still lower than where I would like them.  Just 2 years ago they were consistently in the 80% range.  So, I need to figure out what is causing the slope and how to get them back up.  I'm going to do some digging into when I started Cayston and if I was on my cycle when I had lower scores.  Not blaming Cayston, but that's the only thing I've done differently in the past few years ;/

The doc prescribed me a bisphosphonate that will help with my osteopenia.  It will be a once a week medication.  I just picked it up today, so I'll get started this week.

I'm feeling pretty much 100% from the creeping crud that I had - yay!!  I was told not to start the HTS until I was completely better, so looks like I will be getting on that soon.  My only hesitation is that I am starting Cayst…

7th Heaven

Happy 7th Anniversary to US!!!

I'm one lucky gal to have a husband that is so generous, smart, handsome, hard-working, trusting, loving...the list could go on and on.  I can't wait for many more years together!  I LOVE YOU!!