In the Midst of it All

All day my heart has had a tugging to blog. My blog posts haven’t been consistent along with my Vlogs, but there’s times “in the midst of it all” when your heart tells you what you have to do.

I don’t blog or Vlog everyday, not even every month but when the calling comes I write. That’s when my thoughts roll and that’s when I know it’s a moment to stop and put it all out. It’s time to pull out my biggest strength and write. 

Writing for me has and always will be therapeutic. Saying what’s on your heart and mind is always the best time to write. 

These last 8 months have been crazy. After my hospital stay in February and starting Trikafta it sometimes feels as though the worlds been tipped upside down and rolled down a hill and we’re all just trying to stand up. 

There’s so much we all can say. I can say. Everyone can say about the last 8 months. 

I’m not going to say anything. My thoughts are my own, as well as everyone else’s. 

What I will say though, is that these last 8 months have reminded me that my life motto’s that I strive to live by everyday of: “everything happens for a reason”, and “live each day as if it were your last” have given me more peace than ever before. 

You see, we all take life for granted. Life is a gift. It’s a moment. It’s a second. And it can be taken away in an instant. 

The last 8 months I’ve had peace. I haven’t gotten frazzled. I haven’t stopped living my life. 

Knowing that I am far from perfect. Probably one of the most imperfect people around. But always trying to live my life each day, knowing everything happens for a reason, and life each day as if it were your last-it gave me peace. Everyone’s lives have been tipped upside down but I’ve had peace in my heart knowing I live my life that way, and I haven’t gotten frazzled or extra stressed. Instead I’ve come to realize I’ve “conditioned” myself and lived my life through the years so that when horrible things happen I still have peace. 

And I truly know that I’m not perfect, I make mistakes, and sometimes at the end of the day I know I didn’t live my life how I should or did what I should but I tried. 

I know without a shadow of a doubt everything does happen for a reason. 

These last 8 months, through the midst of it all, I am thankful that I life my life minimal. I strive everyday to live my life to the fullest. Be with those you love. Don’t sweat the small stuff and truly know that everything happens for a reason. 

We may never understand the reasons thing happens. But God does. And I know in my heart he will never steer us wrong. I trust in him. I live my life and I thank God everyday for a new day to be a better “me”.

And through the midst of it all...we will all still be ok. 

~God Bless 

Grace

It’s been a simple hot minute since I’ve sat down to write. 

In my head I have so many things to write about and to update everyone on but sometimes it just doesn’t seem to be the right time. 

But then again-is it ever the “right” time? Sometimes I need to just write what’s on my mind and puzzle it together as I go, and that’s just what I’m going to do now. 

Writing as I’ve said countless times is therapeutic for me. 

Writing/typing is medicine.

I’m not going to get on here to write about what’s going on(Covid ‘19). We all know what’s going on with that and I would like to steer away from that and put a different angle to it. 

Have you ever heard the saying: “a journey of a thousand miles, starts with a single step”.

Life is a journey. 

Your life begins the day you decide to make a difference and run for your dreams. 

Your life begins the day you realize what your “WHY” is. 

My boyfriend and I have deep conversations all the time and the one thing we talk about a lot is something called “Grace”.

You hear grace you may think something with church or religion, but when I think grace I think “patience” & “simplicity”.

Everyday I see people(especially now) who are quick to judge, quick to place blame, quick to be mean to someone when things don’t go their way. 

Grace is a 5 letter word that can make or break things. 

During the last few months; grace is something that has been lost. 

Patience has been lost. Kindness has been lost. Meaning had been lost. 

We’ve gone from being “friendly” people to thinking we’re “entitled”.

Entitlement is not something to be proud of. 

As i sit here and write this-I don’t have notes. I don’t have checklists. I write what I feel needs to be heard. 

And Today as I sit here and just be one with my thoughts I can’t help but hope that maybe this jumbled post can do some good. 

During the last few months, I’ve had a different perspective on things. 

I am a little thankful for these last few weeks. It has reminded myself to slow down and really appreciate those who mean the most to me. 

The extra time I’ve gotten to spend with certain people that I won’t ever get back. But I’m so thankful that it’s brought us closer together. 

The main thing that I’ve taken and hope to keep is how little I actually need in my life...and how precious moments are. 

I have my God. I have my family.

That is all I need. 

I talk all the time about how precious life is and to dream as big as you can and to make as memories as you can. Don’t miss out on life. 

I have dreams so big and I know they’ll all come true.

I know this life I’m living won’t always be perfect. 

I’m not perfect. 

I can and will always work to be the best I can be but I will forever be perfectly imperfect. 

This life is precious. This life is beautiful. 

Don’t take things for granted. 

Dream your dreams and let nobody tell you any different. 

Live your life the way God intended. 

But don’t ever pass up the important things. 

Be your perfectly imperfect self. Do good. 

Make memories. And NEVER forget that the little things mean the most. 

I know as long as I have God on my side, my family,  and I do my best to help others...the little things will mean the most. 

In the next few weeks I will be resuming my Vlog channel on YouTube(Paige: The Joys of Having CF).  Feel free to follow along there or on “The Joys of Having CF” Facebook page, and on Instagram: @paigecf94 

Stay tuned! & I hope we all remember what life truly is about:

It’s about learning to take “a journey of a thousand miles, that starts with a single step”.

.....all while having a little bit of Grace.

~God Bless 

Hop On One Foot

When I was hospitalized last time(in October 2019), my doctor rushed in my room to tell me Trikafta had been approved. 

For 4 months we’ve all been going through a run around with insurance to get it approved. With more hiccups than once can count Trikafta finally showed up February 18th. It was brought down and I started it on February 19th.

There were many happy tears! 

With being in the hospital when I started Trikafta (and probably should have been a couple weeks ago-with a very fun exacerbation, and a large dip in PFT’s), 

This heart of mine was so full and so thankful; there’s no words to even describe that feeling.

Day 8 in the hospital, which was also day 7 on Trikafta. I was beyond happy that after repeating my PFT’s(pulmonary function test) my lung function had gone from 52%(when I was admitted, and the lowest I’ve ever been) to 74%!!! From antibiotics and Trikafta I was beyond thankful for the progress.

Each day I wake up; I am so thankful & have so much gratitude knowing God’s on my side...which makes every day a day to be thankful for & is one more day I get to wake up, fight, & live this beautiful life. 

I will complete a full 14 days of antibiotics, and come back for a follow up with my doctor at 4 weeks out of being on Trikafta. 

We are all anxious to see the results I will have with this amazing medicine. The testimonials have been phenomenal. 

But I don’t need to be greedy. I will be thankful for ANY improvement. 

ANYTHING is something to be thankful for. 

Like I was telling one of the traveling nurses this week when they asked how I like having CF. I am grateful. It makes me-ME. It makes me different. I don’t know any different. This is MY PERFECT life, and I will/would do whatever it takes to live this amazing life God blessed me with. It helps me appreciate life that much more; and like I told my nurse-if it was said that hopping on one foot could make a difference I would do it. 

I will do ANYTHING! to fight and live this beautiful life. 

ANYTHING!

Sometimes people take for granted how “good” life is. 

Sometimes people let the “petty” stuff get to them.

Take a minute and just think-YOU woke up today. 

That’s all that matters. 

Life is beautiful. Don’t take it for granted. LIVE this beautiful life you’ve been blessed with, spend it with those you love, take on adventures and make SO MANY memories!! ...and if you happen to live with something, such as an incurable like Cystic Fibrosis-I hope you fight, everyday-because this life....

This life is so beautiful and we need to live it. Don’t take any day for granted.

~God Bless 

It Doesn’t Work Anymore

It’s been a while since I’ve sat down to write(I say that all the time) but I truly find strength in writing when I don’t realize it. 

In October(during my last hospital stay) a new amazing CF medicine(Trikafta) got approved. I qualify for this drug. And since November we’ve been trying to get it approved. 

In that time; we entered my favorite time of the year.  I turned 25 in November. Thanksgiving. Christmas. 

All of my favorites. 

Last years ending was by far the best I’ve ever had. 

Speed up to January. I caught a bug. My lungs are wrecking little bits of havoc. 

That feeling of sandpaper scratching your skin-that times about 5; every time I cough. 

But that’s normal. My normal. 

Then I went on vacation to Arizona and felt amazing-no humidity, the mountains. Perfect weather. My lungs thrived. 

Shortly after coming back the sandpaper scratch, as I call it, has come back. 

My body does not tolerate oral antibiotics only IV form(except one medicine in liquid form). So I opted to try it to kick this little silliness in the butt. 

Well, the time has come to where the words “it doesn’t work anymore” has come. 

Talk about a little stomach punch. 

Old reliable is no more. My body has become immune to the Oral liquid antibiotic. 

This brings us current...my CF team has been calling every week to check on me and stubborn me-has officially scheduled a hospital stay. 

1 week out. 

My team is not to happy about that but its scheduled. 

CF doesn’t know time. It doesn’t know “schedules” and I may be more stubborn than people think-but I will fight till there’s nothing left in me for my health and this beautiful life. And I’m not so stubborn to let things get out of hand. 

I have been blessed with the most amazing life and I am going to live that life to the fullest. 

This is my normal. My beautiful everyday normal.

Through every single cough, sometimes throwing up, mucus plugs-I am still thankful for this life. And even more thankful to have CF.

I have full faith that soon I will get on Trikafta. 

Living this life isn’t for the weak. Especially those who are closest to us-and live with us. They are a blessing to “put up with us”. 

God put some special kinda of chords in those of us with CF. 

He gave a strength that is no doubt the highest there can be. He gave us willpower, fighting power, the gene to appreciate every single day. 

The ability to love more and make the most of this life. 

He made us warriors. 

Does that mean we’re perfect? And never have a “tough day”?

Not at all. There’s many times with silent cries wondering will this get better...but it’s always turned around with being thankful for seeing another day. 

Being thankful to love the little things. 

Learning to take nothing for granted. 

Does that mean hearing “it doesn’t work anymore” doesn’t hurt? 

For a mere second it feels like defeat. 

A gut punch. 

But it’s always reminded that God never gives you more than you can handle and everything happens for a reason. 

I may be a broken record when I say I love this life and am so thankful to have CF. But that will ring true forever. 

I can’t imagine my life without it. 

This life is so beautiful. Never take it for granted. 

Seeing life through a CFers eyes is one of the most priceless. 

So in a week when I go in for my “tune up”; and I lay on that table for a PICC line-I will be saying prayers to God-still thanking him for allowing me to live with this illness. 

Seeing how life is going to turn out-makes every single fight worth it. 

~God Bless