Wednesday, December 12, 2018

Recital, Med School & a Blog

It's been a busy week and it's only Wednesday!

On Monday, December 10th, I had my very first Piano Recital!!!  I talked about starting lessons in a prior blog (here).  I had always wanted to learn and now I know!  I'm still quite the novice but I thoroughly enjoy playing & practicing.  To officially knock it off my bucket list, I felt I needed to participate in the Christmas recital (yes, with all the other 6-10 year olds that are taking lessons).  So, along with my teacher, we selected "Have Yourself A Merry Little Christmas" for my song.  While it wasn't perfect, I'm still proud of myself for getting up to do it.  I was so nervous, and I have no idea why!! My heart rate was in the 120s prior to going up and I was literally shaking - haha!!  That may account for some of the flubs...hehe.  Enjoy!



Then on Tuesday, the 11th, I went to Augusta University to join my doctor in her Cystic Fibrosis lecture to 1st year medical students.  I think this was my 8th year joining in the fun.  She presents the nitty gritty details of CF - genetics, diagnosis, treatment, etc., and then I get up to give the class a good look at CF and tell them about my life and treatment plan.  I thoroughly enjoy the class every year!  We had two guys come up to us after class to tell us they too know someone with CF.  One was a close childhood friend that passed away about 4 years ago.  It was still very emotional for the doctor-to-be and he said that his friend was his inspiration to become a doctor!  The other doctor-to-be had a roommate at UGA with CF.  I'm always surprised (and excited in a weird way) to hear when strangers know another CFer!

AND also yesterday, I had a blog published through the CF Foundation.  You can read it here.

It's always an honor to be asked to share something with the the great big CF world.  There were a lot a positive and encouraging comments as well - which brought a smile to my face.  Its nice to know there are others out there that think like me :)

Monday, December 10, 2018

CF Appointment 12.7.18

The best way to start the holiday season is to get a great report at my CF appointment!  I wasn't quite sure what to expect since I battled a sinus infection around Thanksgiving.  I was living on DayQuil and nasal spray, just so I could feel like my head wouldn't explode from the sinus pressure.  Thankfully I felt fine other than my sinuses being clogged up - never felt anything move into my lungs! Yay!! That's always my fear - got to keep it out of my lungs!  I'd say I'm not 100% done with sinus issues, but I can survive off the medicine.  Just need to keep some tissues with me in my spin class - for some reason my nose starts running in that class...haha.

As usual, the appointment started with PFTs:

                             12/7/18     8/22/18     11/17/17     11/1/16
FVC                      104%          99%          99%             99%          
FEV 1                     95%           90%          89%             89%  
FEV 25-75%          77%           68%          66%             69%

I'm up some since August and even up just a bit more than I usually am this time of year.  So, that's cool to see.  I'm currently off my Cayston cycle - I'm right at 2 weeks off.  So 2 weeks to go and I'll start back - Merry Christmas to me!

My doctor and I discussed Cayston and having Pseudomonas Aeruginosa (that's the bacteria the Cayston treats).  There is another drug, Tobi, that is used to fight PA.  It used to be in a nebulized formula, which I actually tried 10+ years ago.  It tasted awful - I couldn't handle it...so I stopped.  Then I learned of Cayston and have been on that since.  Back to Tobi....there is a new formula that is used in an inhaler, the Tobi Podhaler.  It's putting a capsule in a device, the capsule is popped so a powdery substance is inhaled.  Its twice a day for 4 weeks, then 4 weeks off.

We discussed giving the Tobi Podhaler a try.  I won't start it in December since I'll be starting at Christmas - with travel and just overall craziness with the holidays I don't want to throw in a new medication.  So, I'll wait til the next cycle which will be in February.  Plus that will give me more time to get insurance approval and all that fun stuff.

We also discussed a trial that is starting for CFers with one copy of F508del and a minimal function mutation.  That would be me!!! I have F508del and 621+1G-->T.  So that's pretty exciting to see my mutation show up on a list of trials!!  It involves taking ivacaftor, tezacaftor and a new drug VX-445. You can read about it here: Trial Enrollment

My clinic was able to select a patient to participate in the trial.  While I would have been happy to participate, I wasn't selected.  Thankfully my lung functions are too high and I wouldn't be eligible.  While I'm bummed that I can't be a guinea pig, I'm more happy that I'm healthy.  The purpose of these studies is to determine if the drugs work...so its important to use someone that can see improvements from the medication.  So, I'm anxiously awaiting the results of the study!!

That about sums up my appointment.  I produced some sputum but not sure that it would be enough, so they took a culture too.  Yuck!  Always hated that part when I was little.

Happy to being feeling well!!



Thursday, November 1, 2018

Pupdate

It feels like forever since I've done a pupdate!  So, I'll catch you up on the life of my babies.

In September I had to take Sarge to the vet when we were up in West Virginia.  I noticed his one eye was starting to get a bit goopy, but it wasn't overly worrisome.  Until Saturday morning.  He could hardly open it and he wasn't himself, so it was definitely causing him some discomfort,  Thankfully we have a couple vet offices nearby our cabin, so away we went.  Turns out he had an ulcer!  Ouch!!   So we got drops, ointment, pain meds and some serum (they drew blood and spun it into a serum that you put in his eye - crazy!).  We then planned for a follow up back home in SC with our regular vet.  And when we did that, he was doing great and healing just fine!

As for Stella, she too had to go to the vet on 10/19 - the week before their scheduled bi-annual visit.  Of course, we couldn't hold off a week before getting an ailment.  Turns out she too developed an ulcer in her eye! WTF is going on?  How are these bullies getting ulcers?  Well, it could be from simply rubbing their faces on their bed or the floor, or also from something getting in the eye and then rubbing it.  Due to our backyard being a mess they don't have many places to potty at the moment, so they go back into the bushes a lot.  The leaves could be irritating their eyes - so we have stopped allowing that to happen.

We did the same process with Stella - eye drops, serum, pain meds. Unfortunately hers didn't heal as fast as Sarge.  I took them to their bi-annual visit on 10/26 and Stella's eye had actually gotten worse. My poor girl.  So, we took some fresh blood to make new serum and were to follow back up on Tuesday, 10/30.

At their checkup, all else (besides the eye) was great!  Good lungs & strong hearts!  They have gotten a bit overweight, so we need to lose a few pounds.  With all the meds, they get lots of treats so now it will be carrots for them! And now that the weather is cooling off, we can get outside and take some more walks!!

Hanging at the vet - look at those neck rolls!

At Stella's follow up on 10/30, there was some improvement in her eye - thank heavens!  If not, they were going to sedate her, and have her 3rd eyelid pinned up to help the healing...she'd be a 1 eyed pup for 2 weeks.  BUT, we didn't have to do it!! We go back Monday, 11/5 for another checkup.  Send my girl some happy thoughts please!!

Sarge trying to get Stella's attention!

Sweet babies

So fresh and so clean after a trip to the groomer!!

Wednesday, October 24, 2018

Anxious Much?

Generally, I'd say I have great mental health.  Thankfully I don't suffer from depression or struggle with the fact that I have CF.  I do stress out about some things that I have no control over, but nothing too bad...I think everyone gets stressed at some point, right?

I definitely have some OCD tendencies and am a germ-a-phob, so that can make me a bit anxious at times.   For example, tubs of butter can really irk me....mine is pristine without bigs hunks dug into it and we definitely don't have any crumbs in it.  I used to have a cow if I saw a nasty tub of butter, but I'm getting better! 🀣

The things that have been giving me some more anxiety mostly have to do with my house.  Granted we have almost lived in our house a year now, and we've spent a majority of that time having things done - carport, landscaping, and a swimming pool! All great things, but it makes for a lot of people around....and quite a mess!


1) I DO NOT like shoes being worn in the house.  I've gotten progressively worse about this.  I just think of all the places I go in my shoes and I don't want that in my house.  I mean public bathrooms are disgusting!!!  Yes, my dogs are on my floor, but I guarantee you they are cleaner than a public restroom.  If they get dirty feet, I clean them! It's a combo of the germs, the actual dirt being tracked in and scratching my hardwood floors.  Yes, again, I know my dogs run like maniacs and have scratched them...that is OK with me.

Just the other day we had some guys come fix something at the house and he marched straight through my house in his big old muddy boots.  I about died.  What did I do?  I locked him out and made him use the back door (which is where he needed access to anyway).  Too bitchy?  Oops!


2) I do not like letting strangers use my bathroom.  Now I'm sure you all are thinking, why would you do that?  Like I said, we've been in a construction zone for a while now.  We did have a port-a-potty in the yard for the long part of building, but not the last several weeks or so.  Then, you get asked if someone can use your bathroom.  What?  Drive 2 minutes down the road and go to Bojangles is what I want to say.  I mean if you just have to pee, guys can go behind a bush, right?  One was a lady, so we had some sympathy that she can't just whip it out and go on a bush.  So, we let her in.  BIG MISTAKE.  She took a dump, then proceeded to leave DIRTY toilet paper on the floor? OMG.  Thank God Will saw it first and cleaned it up.  I mean, don't you inspect to make sure you don't leave a mess, especially in someone else's house?  Then we had a guy ask me and all I could think was "he's got to shit".  So, I awkwardly said OK and pointed him in the direction.  He was in there for a while.  I wanted to curl up and cry.

Sure, this may seem like no big deal to some, but it totally freaks me out.  I had to go hide in my closet and do some organizing to get it out of my mind.  Not normal, right?  Thankfully we are just a few weeks away from being done around here!!!  I will have so much relief!! I can't stand the chaos, dirt everywhere, and the random people I will see in my yard.  I mean, I have to get dressed and put a bra on just to take the dogs out, cause I never know if someone will be in my back yard when I get up.


3) Dog hair drives me insane.  I could vacuum on the hour, every hour and it would still be there.  Why aren't bulldogs non-shedding?  Then they smudge my floors with drool.  I love those nasty drool balls of fur and would rather have the mess then not have them at all.  But, some days I just can't take it....so I vacuum and vacuum again.

Another part of the gross dogs...I got home from running errands and as I was taking my shoes off (no surprise there) and I see a big ole drool smudge on my pants. πŸ™ˆ  Geez, wonder who all saw that on my pants?!?!  The joys of bulldogs!


4) Everyone knows I don't like flying.  Yes, I jumped out of a plane and that was totally different!  I don't like being in a live rocket flying through the sky.  I'm getting better, but just thinking about an upcoming trip makes me anxious.  So, if I fly...you know its something I really want to do or I'm going to see someone I love more than life itself!


OK - just needed to vent.  I feel better now 😊


Wednesday, October 10, 2018

Insulin, Blood Sugar and Counting Carbs...Oh My!


I think a majority of people can say they know what Diabetes is and the basics of needing insulin to help control your blood sugar. Kind of like CF, I take enzymes when I eat, but with Diabetes you need insulin.  Easy enough, right?

Hell no.  I'm an idiot for thinking that.  Diabetes is no joke and it's not for the weak!  I knew I didn't ever want to be diagnosed with diabetes because I certainly do not want to be limited on my candy intake (I think my body is about 75% candy).  But all joking aside, it's so much more than I ever knew.   Being that CFRD (Cystic Fibrosis Related Diabetes) occurs in 40-50% of adults with CF, I have a whole new appreciation for not having it!!

My nephew was recently diagnosed with Type 1 Diabetes, at age 5.  And let me be the first to tell you that this little dude is a rock star.  He hasn't let it slow him down and I am BEYOND proud of him.  Just when I thought I couldn't love the little guy any more, he shows me that he is so brave and can roll with the punches.

I went up for a visit a couple weeks ago and I basically got Diabetes 101 and Diabetes for Dummies all in one visit.  OMG.  You need a calculator when you eat!  You have to read every label.  If it doesn't have a label, you have to rely on google to tell you what you need to know.  I mean, how did we function before smart phones?

Each meal the steps are:
1) Check blood sugar
2) Count grams of carbs to be consumed at the meal (you need to measure and/or weigh the food....even little things like how much ketchup you dip your fries in!!!!)
3) Do a fancy mathematical equation based on the blood sugar results, desired blood sugar and carbs to determine how much insulin is needed
4) Then the insulin injection

Try that one day.  Measure how much you consume and calculate the carbs.  It's time consuming!!  What you think is a tablespoon is probably wrong!

He's still in the early stages of diagnosis, so things are probably a bit more complicated now versus in a few months/years when it's not all new.  But right now, every part of the day has changed.  He'll get one of those glucose monitors you wear all the time to save his little fingers from all the poking.  And eventually an insulin pump will help too.  But before all that gets started, it's the finger pricking before meals and bed, shots at meals and bed too.

Hungry between meals, a low carb snack is fine.  You want a granola bar?  Guess what, that's probably going to require shot!  I was a label reading machine - so afraid I would over carb my little buddy while I was babysitting.  Thankfully, we did good!!

I have a much better understanding of Diabetes, and still have a lot to learn.  I want to be sure to know the ins and outs so I can be sure I'm prepared when I'm with my nephew.

It was definitely a diagnosis you don't want to hear.  The consequences of your blood sugar getting too low or too high are scary.  But, it's manageable.  Just like with CF, you have to take care of yourself.  Do what you have to do for YOUR body.

On my visit, I was on my Cayston cycle, so I made sure he saw me do my treatments.  I showed him all the pills I had to take when I ate.  I wanted him to know that he's not the only one that has to do things a bit different than the rest.  I want him to know it's OK to take medicine to make your body work better.  It's OK to be different (personally, I think its even cooler to be different).  Diabetes will not define who he is.  Its just a part of his totally awesome package.

If anyone has any resources you think would be beneficial for me to share with my brother and sister-in-law, please comment below and I'll pass it on!

**Do not take any of the above as medical advice!**




Wednesday, August 22, 2018

CF Appointment 8.22.18

It was a busy morning for me!  I had to get up a bit earlier than usual to head to my quarterly CF clinic.  Being that I was having my Glucose Tolerance Test, I wanted to get that started as early as possible.  Why?  So I could eat! This girl doesn't like skipping a meal! 🀣

I got checked into the lab first, where they started with 2 vials of blood...no big deal! Thankfully, I already had my other annual blood drawn in May, so that saved me.  Then, I drank the orange drink...is it just me, but I don't think it's that bad.  Yes, it's a bit thick and sweet, but I like sweet stuff. From there, I checked in for my 9am CF clinic.  I had my PFTs, met with the respiratory therapist, then the doctor.  I haven't been able to produce any sputum the past few visits, so I was determined to cough something up today...and I produced! Not much, but hopefully enough to test.  I want to know what's growing in these lungs of mine.  My nurse came in to give me my farewell paperwork and said I was due for X-rays too.

So, it was time for my 2 hour blood draw, so I went back to the lab for another quick draw then off to X-rays.  They were super fast with my X-rays too!  Then I was free - just under 2.5 hours.

I didn't have much to report to the doctors.  I've been feeling good so I can't complain.  I had skipped several vest sessions (and exercise) with all my travels in August, but I'm back home and back to my routine!

So, here are my numbers:

                        8/22/18         5/16/18         8/9/17         8/16/16
FVC                    99%             99%            101%            99%
FEV1                  90%             91%             89%             88%
FEV 25-75          68%             73%             61%             64%
*I'm on my off cycle of Cayston*

Looking good! They were happy with my progress and encouraged me to get back to my workout/vest routine.  So, I figured I'd start now and vest while I blog and update you all on my appointment!

Now, the hubby just got back home from Vegas, so it's time to go get dinner going! Cheers!


Tuesday, August 21, 2018

Jumping out of a perfectly good airplane

I did it - I went skydiving with my cousin Brittany on August 6th!!!  I don't have the words to explain the rush, the thrill of flying (or falling rapidly towards the earth), the beauty or the complete awe I felt from skydiving.  It was THE BEST and COOLEST thing I have ever done!  And......I want to do it again! 

Being me, I thought of every possible thing that could go wrong.  What if the parachute doesn't open? What if the plane crashes on take off? What if I come unhooked from my instructor? What if my instructor passes out and can't pull the parachute?  Yep, the questions went on and on in my mind, especially the few days leading up to the jump.  I even made a list of things I want my friends to have if I die!!  I mean, who does that?!?!  I guess I like to be overly prepared?!

Needless to say, the worry and the "who gets what" list weren't needed.  

I was up in Pennsylvania for my adventure - that's where my cousin lives.  So, I woke up that morning and felt pretty relaxed.  I took a walk around my Aunt and Uncle's farm, saying hi to the horses and cows, and just enjoying the fresh air on that beautiful morning.  Then, I headed over to my cousin's house.  We had about an hour drive (north of Pittsburgh) to get to the airport.  We both were excited and nervous - and were so glad her parents came with us.  

We arrived and were a bit in shock of what we saw.  It was just a small airport hanger type place right next to the airport (not really sure what I was expecting).  We signed our lives away and then waited.  Thankfully, we were early arriving so we got to be on the first load of jumpers (yes, there were more than one load worth that were as crazy as us!).

Me, Aunt Lisa and Brittany

Me, Uncle Brian and Brittany

Signing our lives away!

Uncle Brian wouldn't let me run away!

We were given a demonstration of what would happen and then got suited up!  Our instructors (tandem partner, whatever you call them) got us relaxed and excited.  Everyone was beyond friendly and made us feel safe and secure as we prepped.  





Then, it was time to load up!  Holy smokes!! The plane was little...and I don't like little planes.  I was more nervous of the little plane at that point then the jump.  HAHA!






I of course couldn't resist purchasing the video/photo package...so I have lots to share from my adventure!  

Taking off!

Brittany is about to jump! Bye Britt!!

I'm next! 



This is when Chris had us do a 360! 




We did it!!!
Sooooo happy!


It was more even amazing than I ever imagined it would be.  I'm so glad that I was able to skydive, especially with my wonderful cousin Brittany. πŸ’•  

To top off our time together, we went to the Taylor Swift concert the next night in Pittsburgh.  Ah-mazing!! 




 It was a spectacular adventure and love that I checked off another items on my Bucket List.  Maybe I should add it back?  I'd definitely do it again in a heartbeat!!


If you care to watch the video, here it is: 





Tuesday, June 5, 2018

Farewell 34

I can't believe my birthday is tomorrow!  My #35daysofdonating challenge has been so fun and rewarding - it feels like it went by so fast.  I loved receiving input from my friends and family about organizations that mean something to them.  I even learned about organizations I didn't know existed.  In the last 34 days (35 tomorrow) I hope I've made a difference somewhere.  I know I didn't get to donate to all the suggested places, and I'm sorry if I missed one you wanted!  I wish funds were endless and I could do this every day forever!!!

You can check out my list of recipients here.



To recap my 34th year on this planet...here are some pictures of my favorite moments.

Our North Dakota Trip

Having my sisters (and family) visit camp for the 1st time

The West Virginia State Fair

More family camp visits

Taking my pups on walks at camp


Spending Christmas with our families


Celebrating my brother-in-laws 40th birthday

Visiting South Padre Island and Mexico


Vegas - Justin Timberlake!!! and the ACMs!!

Enjoying downtown with Will and the pups


And the quiet nights at home (while these 2 are either snoring or wrestling)



As you can see.  It's been a year of traveling and fun!! Unfortunately good times aren't all we had.  I lost my Pap and T-bone this past year, which breaks my heart.  But I cherish every memory with them and will bring a piece of them with me on my continued journey in life.  πŸ’—







Thursday, May 31, 2018

Bachelorette Recap

Yes, I still watch The Bachelor and The Bachelorette.  I guess it's one of my guilty pleasures - naw, I really don't feel that guilty watching πŸ˜‰.  But, if you haven't tuned in this season, you need to!!!  Don't worry, you only missed 1 episode, so you can catch up easily.  Becca is absolutely stunning and seems like a pretty cool gal.

I love the show in general, but I REALLY love the fact that there is a cutie by the name of Colton Underwood this season. See!!!!

Photo taken from ABC

Colton is a former pro football player turned philanthropist!  And the coolest part is that his charity supports Cystic Fibrosis!!!  It's the Colton Underwood Legacy Foundation...check it out here.  He was inspired to start this foundation because his adorably cute little cousin, Harper, has CF.  His Foundation has teamed up with Afflovest to provide 50 vests to those CFers that need one.  They are doing one per state!! From the website, I can see that they've done 3 so far with a 4th about to be completed.  So there is plenty of opportunity if you need one...you can fill out an application here.

So, whether Becca choses Colton or not, I don't know....but he's a winner in my book!!!  I was super excited to see some light shining on the CF community through Colton.  Thanks so much for what you are doing, Colton!! 


On another note, I'm only 6 days away from my 35th birthday! Woohoo!!  So that leaves just 6 more days of donating left.  This project has been so much fun...I don't want to stop!  Thanks to those that have given suggestions - I appreciate it.  You can still give me suggestions for these last 6 days!

You can check out all of the recipients here.

Sunday, May 20, 2018

CF Stuff

Wednesday was my quarterly CF appointment.  I'm happy to have a good report!  I had my annual blood work done too, but not the glucose test.  I had a 1pm appointment and I wasn't fasting all day - hell no!  So, I'll do it when I have a morning appointment in August.

I made the rounds with the whole team: dietician, respiratory therapist, psychologist, doctor, etc.  Is it strange to like going to the doctor? I truly enjoy my CF care team and enjoy catching up like they are old friends.

Fortunately, I didn't have any problems to report (just a little sinus stuff, but no big deal), it was short and sweet.  Here are my PFT results!

                         5/16/18     2/14/18    5/9/17     5/10/16    6/2/15
FVC                    99%         103%       99%          96%        89%
FEV1                  91%          95%        87%          84%        81%
FEV25-75%       73%           79%       62%          57%        61%

They are down a smidge, but nothing to be alarmed about, I'll gladly take them!!  They are still better for this time of year then they were the last 3! Woohoo!  I'm currently on my Cayston cycle, I was on Day 8 on Wednesday.  My doctor and respiratory therapist recommended using a nasal rinse to help with sinus stuff, but that ain't happening! The thought of shooting liquid up my nose makes me gag.  LOL  So, Claritin it is for me!

So, my appointment was great and I left feeling satisfied and ready to tackle the rest of my day.

Unfortunately when I got home, I read some heartbreaking news on Facebook.  A fellow CFer had passed away.  I actually had the pleasure of meeting April several years ago at a Great Strides walk in Augusta.  She and her mom were so kind and a light in the CF community.  April received a double lung transplant about 5 years ago, but was starting to have complications early this year and wasn't approved to have another transplant.  She was planning to marry this October.  I'm heartbroken for her fiancΓ© and family.  Breathe easy, April.  You'll never know the people you made an impact on by sharing your journey.

So, I sat and cried for a while.  For April.  For the life she didn't get to have yet. For her fiancΓ©. I can't imagine his grief.  For her mom and family.  For all of the CFers out there struggling each day.

I think I live a fairly normal life.  Yes, I'm sitting here doing my vest as I type, but to me that is normal.  I'm so beyond fortunate for my health.  I dread the day that I can't run around with my nieces and nephews, or travel with my husband, or play with my dogs.  I don't want this life I have to ever end.  So, I'll sit here and do my vest on a Sunday afternoon, while others may be shopping, or like my husband, playing golf.  These inconveniences make me healthier and will keep me on this planet as long as possible. 

Thursday, May 17, 2018

#35daysofdonating

Thank you all for the interest in my #35andstill alive challenge.  As I stated in my previous post, I want my birthday to celebrate something other than me.  I want to recognize organizations that help others and people in tough times.

Will has been a huge support and encouragement to me as I've started this challenge.  I'm so thankful to have him in my corner.

I'll be continuing to donate $100 to one organization/person a day all the way up until my 35th Birthday!  I've added links to each place I donate so that if you too wish to support the cause you can.

Hopefully my donation will lead others to donate what they can.  Please share any suggestions with me!!!

Day 15: City Mission

Thursday, May 3, 2018

35 and Still Alive

I'm quickly approaching my 35th birthday and this year I want to do something a bit different!  Don't worry, I'll still celebrate birthday month πŸ˜‰!!  I want to make my birthday about something more than me, about doing good and celebrating life, about being kind, about helping others, and about spreading love.

So, I have decided that for 35 days leading to my birthday, Will & I will make a $100 donation to an organization, a charity, or person/animal in need.  While I have some charities dear to my heart that I will contribute too, I also need input from you all.  If you know of something/someone that could benefit from a donation, please share that with me.  I know there are way more than 35 causes that could use support and it will be hard to select.  But I'm greatly looking forward to helping those I can.

Let the fun begin!! And yes, you mathematicians...it will be a total of $3,500!!



So, for Day 1....


The Cystic Fibrosis Foundation!!  I'm sure this isn't a surprise - lol.  The CF Foundation has been continuously making great strides into finding new drugs that make living with CF easier, and of course are working towards a cure.  Unfortunately I won't be making the CF walk this year (it's on Saturday), but that doesn't mean CF Stinks can't still help the cause.  So, I'm donating under my usual team and working to raise more funds.  You too can support CF Stinks' fundraising efforts here.

I'm proud to be 35 and still alive...living with Cystic Fibrosis and feeling healthy!!


#35andstillalive #35daysofdonating #cfstinks #day1

Wednesday, April 25, 2018

Knocking out the Bucket List

CF is hitting all too close to home lately.  I know of someone that just had a double lung transplant.  I know of someone that was told they weren't approved to get a lung transplant.  I know of a little girl that lost her battle.  Why is CF so cruel?

CF will not defeat us.  We all fight.  We fight to breathe everyday.  We fight to spend every day possible with the ones we love.  We fight so that others can see hope.  I will not stop fighting.  I will not stop living.  For those that aren't able to do the things they used to do... I carry you with me in spirit as I live.  As I  breathe each breath.

Many people have bucket lists.  But how many of those people truly aspire to make those bucket lists come true?  Well, I'll tell you this.  I do!! I've come to realize as I get older (approaching 35 in June) just how fragile life can be.  I don't know if it's CF that makes me appreciate the little things, but I sure try my best to be grateful for everything.  Maybe not the person that cuts me off in their car, but I will appreciate the dog hair thats always on my clothes, not matter how much we vacuum or use the lint roller.

I am extremely grateful for my husband who sees my dreams and wishes.  He's my partner in crime and he busts his ass to help make those things come true.  Most recently, he gave me tickets to the ACMs (as my Christmas gift...I didn't get to collect on it until April 15th πŸ˜‰)  But, we had a trip to Las Vegas with his brother and wife.  Just the 4 of us and it was a blast.  And the ACMs?  AMAZING!!  Julie and I got our hair and make-up done that afternoon and got all spiffed up for the show!  I don't have the words to express my excitement.  And that weekend, he knows my love for Justin Timberlake and he got us all tickets for his show (which was coincidentally in town that weekend).  Here are some pics:
Julie and me before the ACMs
The gang before Justin Timberlake

Not only Will, but my family and friends support my determination to fulfill my bucket list.  My bestie and her family got me piano lessons for Christmas!! It was my fault for the delay, but I finally started taking the lessons just 2 weeks ago! I LOVE IT.  It makes me sweat each class.  HAHA.  I grew up playing the clarinet, so thankfully I know how to read music (for the most part) and my stepmom taught me some basics on the keyboard when I was younger.  So it wasn't completely like throwing me to a pack of wolves, but that bass clef!  Those of you music people will know what I'm talking about.  I struggle, but I'm getting there.  My left hand definitely has a mind of its own.  I'm planning to continue my lessons and even want to participate in the recital in the fall!! πŸ˜„

I'm sure as I continue on my life journey, my bucket list will evolve.  Some things may not be as important as they once were.  And I know I will continue to grow my list.  I don't want it ever to be empty! I want to have things to work for and look forward too.

What's on your bucket list?  Pick one and make it happen in 2018!! You can do it!! And when you do, let me know.  I'd love to hear what you all want to do.

Tuesday, March 6, 2018

Life in Pictures

As usual, I'm slacking with my blog.   So, in short...I'm doing great, feeling fabulous, managed not to get sick on the 8 flights I had in February (that's a miracle), and have just been busy enjoying life.  So, to catch you up on my busy 2018, here are some pictures!

January - weekend at The Greenbrier in White Sulphur Springs, WV to celebrate the best brother-in-law in the world turning 40!!!


We surprised him!!
Family love πŸ’•


At the beginning of February we headed to South Padre Island, TX to visit Uncle Charles and Aunt Aura.  It consisted of lots of fun and a trip to Mexico (and many pictures that I can't post as not to incriminate myself). 😜

When in Mexico, you try the jalapeΓ±os!

Then after a few days at home, I headed to Indiana to visit my brother, sister-in-law, nephew and niece for a week!

Wagon Ride

Love

Silly faces

πŸ’—

We played Twister and it was hysterical!!

And then to kick off March, me and my girlfriends took a trip to St. Augustine, FL!



And of course, my pictures would not be complete without my pups!!
Goofballs


So, that sums up the past 2+ months with lots more craziness ahead!!

As far as Lent goes....I'm doing good! I did slip up and take the kids to Wendy's while I was in Indiana and ate a couple fries before I realized what I was doing πŸ™ˆ.  Oops!! Haven't had any potatoes (after that) or beer! And I must say, I'm really in the mood for a Blue Moon!! Dang!

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...