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My Pap

I've been a little quiet lately - sorry about that.  I'm sad to say, I lost my Pap.  And that made my world stop.  He was one of the most amazing, fun-loving, kind, funny and happy people, plus he was the greatest Pap in the entire world.  He had been battling with dementia and Alzheimer’s the last several years, and I could tell it was getting worse as I spoke with him in the last few weeks.  Then, his health took a sudden down turn.  I debated if I wanted to go up to Pittsburgh and see him, because in my mind, he’s always been this big, strong man.  I didn’t know if my heart could take seeing him in decline.  But, I woke up Sunday and was doing some things around the house and felt the urge to get up there.  So, I loaded up and made the 8 ½ hour drive to my Pap. 
I’m so glad I went.I told him that I loved him and that it was OK to go.I got to be by his side and prayed with him as he passed.I will never be the same.
My Pap.What a guy.He was the kind of Pap that joked with h…

CF Updates

I had my quarterly CF appointment on August 9th.  I left that day for WV, and forgot my notebook so I couldn't share all the numbers until I was back home.  And now, I'm home...watching the eclipse :)  It just happened, we were at 99% totality and it was pretty amazing to see!

So, here are the PFT results:

                          8/9/17                5/9/17               8/16/16                8/4/15
FVC                  101%                   99%                  99%                     94%
FEV1                  89%                   87%                  88%                     83%
FEF25-75%        61%                   62%                  64%                     57%

I'm happy! Glad that the FVC went over 100, just got to work on that FEV and get it back in the 90s.   I was on my 4th week of Cayston and feeling good for the appointment.

I did go early as I had to have my glucose test done - Yuck!  I'm sure that will be fine.

Nothing else to really report.  BMI is…

Pupdate

My little bully babies are growing up.  Sarge & Stella turned 6 at the beginning of July and T-Bone turned 8 at the end of July.

We celebrated Sarge & Stella's birthday at home with some special treats from the local pet store.  T-Bone got to be at his favorite place on his birthday (our cabin in WV).  Unfortunately I was a bad dog mom and forgot his birthday hat and treat, but he got extra loving and sang to multiple times.

T-Bone had his bi-annual check up just before his birthday and had a good report.  We are changing his eyedrops due to the formula change in what he was using - it was making his eyes red and itchy. And then, in his ear (not the one that just had surgery) we noticed a tick like thing in one of the folds. He got very irritated with us when we messed with it, so thankfully his appointment was the next day, so I figured I'd let them piss him off.  Turns out, its not a tick.  The vet said it looked just like the mass that he saw in his other ear cana…

Speeding Heart

Greetings!  Hope this finds everyone doing well!!

It's been rather quiet around here lately, which I will not complain about!

We had a busy start in July with traveling, but then got to spend some time at home and then back at camp last weekend.

The last week of July was busy with appointments.  T-Bone went to the vet, then I had a dermatologist and cardiologist appointment.

I'll share more about T-Bone in an upcoming Pupdate 🐾.

My dermatologist was great.  I've been going bi-annual since I had a funny mole, but I'm happy to report that I have been approved to go back to annual visits since I haven't had anything suspicious in 2 years! Yippee!

Then there was the cardiologist.  If you need caught up, read here and here.  This appointment was to have my echocardiogram and get hooked up for my 48 hour monitor.  My heart still does it's weird stuff with fluttering and some palpitations, so I was actually really excited that it was being weird on the day of my app…

Cheers to 11 years!

It's truly scary how fast time goes by sometimes.  I feel like I just wrote this blog post.   This past weekend, Will and I celebrated our 11th anniversary! Holy cow!!  We were in Johnson City, TN visiting some of our friends and Will played in the Member-Guest golf tournament (which they won - woohoo!).  We had a spectacular time!!

Being our anniversary, we heard that Will was lucky that I "let" him play golf that weekend.  When I hear someone say they "let" their spouse or significant other do something...it makes my skin crawl.   Please take no offense if you said that to us.  I just wanted to hit on a point that we find so beneficial in our relationship.

We are a team.  A single unit.  We do not grant permission for one of us to do something.  There is not one of us that makes decisions, controls the other, or is the boss.  Do we discuss things? Yes.  Do we always agree on things? No. But, it's our job to support one another and compromise in times we d…

Playing catch up

Looks like I went missing again.  Sorry.  So here's a little run down of what's been going on since my last post.

1) I turned 34!! Woohoo!  I love birthdays!!  We kept it pretty simple - did dinner out with our friends and just enjoyed our time together.
2) We went to North Dakota!  We visited Will's side of the family which we haven't seen in a VERY long time.  I can't believe it was almost 9 years since I was up there.  How horrible is that?  We had a FABULOUS time celebrating his cousins wedding and just catching up with family.


3) TMI - I got my IUD replaced.  🙈
4) My brother, sister-in-law, nephew and niece visited and of course I cherished every minute.  We didn't get a whole lot of time together, but it was fabulous.  We were able to celebrate their birthdays while they were here.  I've never missed a birthday with them and don't plan on it!

5) We went to our cabin in WV for 2 weeks!!!  I totally checked out of life, but man was it awesome. My d…

Feeling Good Guilt

Having Cystic Fibrosis is not something that consciously crosses my mind on a daily basis.  I take pills and do breathing treatments throughout my day, but I just do them out of habit.  I don't sit down to eat a meal and say, "oh, I have CF, I better take my enzymes".  Instead, I just subconsciously walk to the cabinet and pull out the bottle, or if I'm out to eat, I reach in my purse and grab them.  It's just like brushing my teeth before bed every night.

While I know I have a disease that is incurable.  I find myself just living life and doing the many things that I want to do.  While this seems well and good, it's also unfair.  There are other CFers fighting for their last breath, waiting for a second chance at life with a lung transplant, or being hooked up to an oxygen tank and dragging it with them wherever they go.

I often tell people that I am a bad example of CF.  When explaining CF to someone, I talk about the deterioration of the lungs, challenge…

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…

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.
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 any…

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.  Co…

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:




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!

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!!




Pupdate: T-Bone Surgery

Well, my boy had surgery!  I took him to Athens, GA on Monday, April 10th for his consultation.  They went over the procedure and all that good stuff.  He was to have a CT scan that afternoon to get a better look at the ear canal and make sure that there was nothing else going on in the ear.  I kissed my boy goodbye and headed back home.

Side note - I held it together while I was in the office, but totally lost it when I got in the car.  😭😭

On Monday evening, the vet called to say the scan looked clear other than the mass in his canal...which was fantastic news.  He would go into surgery the next afternoon.

Tuesday - They called in the morning to say he did good overnight and was fasting to prepare for surgery.  Apparently, he was a bit grumpy and didn't like being in a kennel, so he was being vocal...so that got him a few extra walks! LOL  They called again when he was taken back and my nerves went crazy.  We waited, and waited, and waited some more to hear how it all went.  Ha…