Wednesday, May 24, 2017

Gummy Worms

I don't brag much about my hubby, but I need to take a minute to tell you how amazing he is.  He busts his ass everyday to make a great life for us.  It allows me the freedom to be a stay-at-home bulldog mom.  Which then gives me the freedom to really focus on my health by getting to spend all the time I want at the gym!  I can get all my breathing treatments in without a crazy work schedule.  And I can go to appointments without worrying about asking for time off work, which is always a pain to do and a waste of a vacation day!  He goes above and beyond for me, and I'm truly grateful.

Last weekend, we were out doing some running around.  On the way home he stopped in a gas station for a red bull (or maybe it was beer, I can't remember) and asked what I wanted.  Surprisingly I was craving gummy worms that day, not my usual Sour Patch Kids.  Not just any gummy worm, they have to be the Trolli sour gummy worms - duh!

Anyway, he came out empty handed and said they didn't have any.  Bummer for me.  We started driving home, then he turned around and went into the Dollar General which was a few blocks away, just so he could get some worms for me.  But, they didn't have any either, nor did they even have Sour Patch Kids.  So, we pulled out and he turned the opposite way of home!  He was determined to get my candy for me!  We drove a few miles out of the way to go to a bigger newer gas station.  I sat and waited in the car.

I see him coming out with bag.  What did he buy?  I got a bag of gummy worms, then the big bag that has the mini worms, plus some sour patch kids!  3 bags of candy!! And to top it off, he bought one of those silly spinner things! HAHAHA!  We had been talking about them and what the point of them was, so he figured we should give it a try.

How great is he!?  I wouldn't have gone to 3 places for myself, but he did.  It's the little things that show me how much I'm loved! 💕


Wednesday, May 17, 2017

CF Appointment

I was too busy blogging about the Great Strides event and not having any pictures of my college graduation that I completely left off my most recent CF Appointment, which took place on May 9th.
Rocking my face mask! 
Not much to report.  I've been feeling great, working out, eating good (not as good as before, but still not loaded with candy and pop), and enjoying life.  One weird thing did start the 1st week of May.  I noticed my heart doing some weird things.  It started just once or twice a day, then progressed to many times.  What it is you ask...I don't know.  It's hard to explain.  Typically you don't feel your heart beating or think about it.  But I was watching tv and noticed it started to flutter a bit.  I thought maybe I was nervous watching a suspenseful show.  But then it happened again the next day, and again the following day.  I should have been keeping a record of when it occurred and what I was doing.  Oops!  But, I do know that it has been while I haven't been doing anything strenuous...like watching tv or laying in bed.

Sometimes it feels like a flutter, then sometimes its pounding.  You know that feeling when you go over a bump and your stomach drops?  Well, it kind of feels like that but its my heart.  That's about as good as I can explain it.  I put my Fitbit back on to try to record my heart rate, but it's a piece of crap and died again after a couple days and won't charge or turn back on.  😠

Back to my appointment.  I mentioned it to my care team.  Of course that morning, it did it's weird thing...I went to the gym for my workout and then it stopped.  So for a precaution, they hooked my up for an EKG.  I haven't heard that anything was odd, so I'm assuming it was normal.  Plus, I didn't feel it do anything funny while I was hooked up.  Always the same thing, symptoms never show themselves to the doctor.

So, it has been happening here and there since then.  So, I ordered myself a new heart monitor!!  Plus I want one for working out anyway! 🙂  Let's hope when it comes in that it works!!!  I was told to contact my care team if it keeps up, but I haven't done that.  It's not scary feeling.  I don't feel like I'm going to die.  It's just weird and makes me pause.

I'll keep you all posted.  I've been watching my caffeine, making sure I'm getting some electrolytes & potassium.  

As for PFTS...I was satisfied.  You know me...I want better, but I can't complain that's for sure.  My small airways (25-75%) dropped a bit.  It had been a few days since I did my vest. 😮  I was busy with life...it happens.  Back on track, have no fear!!

                            5/9/17           2/7/17         5/10/16         6/2/15
FVC                        99%             96%             96%             89%
FEV1                      87%             88%             84%             81%  
FEF25-75%         62%             71%             57%             61%

Not much else to report.  My care team has a new doctor, so it was my first time meeting her.  She seems great and was very interested to learn my CF story.  I think bringing some fresh blood into the group is a great thing!  

I had my annual blood work.  Except the Glucose test, I will do that another day.  Was not in the mood to fast til 1pm and I had things to do that morning (the gym!).  Plus, I tell them all the time that it's fine...lol.  I had my bone scan last visit (February), but they STILL don't have the official reading from the radiologist (or whoever it is that reads those).  Crazy, right?  I said I was glad it wasn't a life or death result.  Sheesh!

That's all for that!  I'll keep monitoring this wacky heart thing and see where we go from here.


Just got a new shipment of meds! What a full box!! Cayston, new handset, Hypertonic Saline & Zenpep.  I'll be starting Cayston this weekend.







Saturday, May 13, 2017

Graduation Time

Tis the season! Graduation season that is.  It's hard to believe that this month marks my 16th year I've been graduated from high school and 12 from college.

High school isn't really a big deal to me.  It wasn't really my favorite time of life.  I had braces, frizzy hair, and was rather awkward.  It's college that I really grew up and found myself.  It was one of the best experiences of my life.  Learning to live outside of my parent's home, figuring out what I wanted to do with my life and truly embracing that I have CF and not letting it stop me from reaching my goals.

I can't say that when I walked across that stage 12 years ago that I envisioned the life I live now (it's way better then I could have dreamed).  There were 2 things for sure: 1) I wanted to marry Will and 2) I would have a bulldog.

#2 happened first...I got my beloved Sophie the very next day!  #1 took another year to happen :)

My little brother just graduated from USC on May 5th.  Coincidently 12 years to the day after I graduated!  Crazy!

I started to look back through some old college pics to see if I could find a picture of us when I graduated.   BUT I HAVE NO PICTURES!  How can that be?  I lived with a camera attached to me in college...I have pictures of way more things then I should have pictures of (don't worry college friends, I won't post them!).  But, my college graduation..the biggest day of my life (up to that point) and I have nothing.

Yes - this was back when we still used cameras with film.  Wow - makes me feel old.   Now, my phone is attached to me and that takes better pictures then my actual camera.

So, thankfully after just chatting with my stepmom...she has pictures and is going to send them to me!  YAY!

Back to my brother...here are some pics of his big day!  This is just the beginning of a whole new adventure.  I hope all your dreams come true (and you make the big bucks 😜)!!


The fam
Taylor & Carly
Party Time


Friday, May 12, 2017

Great Strides 2017

Well, the big event is over!  My team and I participated in our local Great Strides walk on Saturday, May 6th.  Thankfully, we had a beautiful, sunny day...but not too hot!

The Augusta, GA walk had a goal of raising $60,000 and they surpassed that by over $5,000!  Fabulous!

I wanted my team to at least raise $12,000, but ideally beat our total from last year of $13,325.  And, we will succeed!  We aren't officially there yet as we are waiting for a donation to come from a company match...so that goes directly to the foundation. BUT we are supposed to get credit for it still.  When that comes through, we will be at $13,595.63!  Woohoo!!

I'm happy to have had another successful year!  So very thankful for my wonderful supporters!!

Here are some pics from our day:




These 2 💗
Unfortunately, I didn't take a ton of pics that day :(  I was busy running around like a crazy person.  But, it was a great day!! Afterwards, my team and I had a celebratory lunch!! Which was even more fun!

Wednesday, May 3, 2017

Great Strides Update

I can't believe the Great Strides walk is on Saturday!  I blinked and it was here!

Just wanted to share an update on our progress.  Last year CF Stinks raised $13,375.  I would love to get there or even beat it this year...so we will see.

So far, we are at $11,900!!

I had an online Pampered Chef Party which raised about $100.  So, hopefully that check will get here soon so we can count it towards our walk goal.

As always, I'm blown away by the generosity of my family, friends and supporters.  You all fill my heart with joy and pride to know such amazing people! 💗

I picked up our team t-shirts yesterday, so I'm so excited to get those in the hands of my teammates.  Looking forward to a beautiful day with those I love most!!




Tobi Podhaler Review

At my CF clinic in December (read here ), my doctor and I discussed starting the Tobi Podhaler to switch up Cayston.  Just like Cayston, Tob...