The Joys of having CF

The Joys of having CF

Thursday, November 5, 2020

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 

Tuesday, May 19, 2020

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 


Friday, February 28, 2020

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 




Thursday, February 6, 2020

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

Tuesday, November 19, 2019

5-25: Reality



5-25...last week I turned 25. I LOVE birthdays. It was such an amazing day. Why? For so many reasons. 

If you’ve followed or known me a while you know I was diagnosed with CF at 4 months old. 
At 4 months old (born in 1994, diagnosed in 1995) not many knew how to treat CF, lite lone what it was. 

At 4 months old my parents were sent to a big University Medical Center(where I currently go today) and they were told that they wanted to admit me; otherwise they may be taking me home one way or another(alive or not alive). 

At 4 months old they were told I may see kindergarten-maybe. 

Age 5 came. Years of hospital stays. Years of medicines. Years of procedures. Years of advancements. 
At age 5 I started kindergarten. 

At age 5 I was told maybe I would graduate high school. 

Fast forward to 17-I graduated high school. 

Statistics are always that one word that kind of “bug” me because who are we to judge someone’s life. Everyone’s different. 
But it is also motivation. 

After going past milestones or “predictions” you start to not believe in them and instead strive to succeed and see what statistic you can prove wrong. 

For the longest time we were told I would probably never see 25. 

Well I am here to say that statistic was proven wrong also. 

  1. currently my favorite number. 1/2 way to 50(that is so exciting). 

Has all 25 years been easy? Oh goodness no. 
Has the last 5 been probably been the most interesting health wise? Absolutely!!

But I have an amazing feeling that the next 25 will be the best. 

But-the last month has been the best by far. 
The FDA approved a medicine that is as close to a “cure” as it can get, for now. 
It makes the last 25 years so worth it. Heck-every.single.day we wake up is a day that is WORTH IT!

It is amazing to see in 25 years how FAR the research has come. 

With that being said-the reality of the new medicine? Some of us who do qualify still may not get it. Why? Because it is expensive. This kind of thing isn’t just “free”. At this point we can only pray that insurance companies see how beneficial it is; as do the doctors, & researchers.

My insurance approval  is still in process. 
I’m going by the motto of “no news is good news”. 

Every single night I pray for approval for everyone who can qualify. 

So-to end; 5-25...it’s been a journey for the books, but it has been the most AMAZING! journey. This life is so beautiful!  I just hope I can truly show my gratitude and thankfulness for everything God has blessed me with in these 25 years and I hope the next 25 are just as good. 

Because at the end of the day-it doesn’t matter how crazy the journey is-if I can lay down with a full and grateful heart, take things slower, appreciate the little things, and just love this life I’ve been blessed with-that is what my life goal is. 

And when God does decide it is my time to go: all I hope is to hear when I see him is “well done thy good and faithful servant” 

~God Bless 

Monday, October 21, 2019

A Day to Remember

Today is a day to remember, as the FDA approved a new Cystic Fibrosis Medicine that works with one of the mutations I have. 

I have so many thoughts on what I could write(and what I will share soon) but I simply wanted to share what I wrote on my Facebook page today(The Joys of Having CF).

My thoughts I shared “in the moment” as I saw the news and my doctor came into my hospital room.
I had also shared the FDA website as reference to the post.
——————————————————————————————————————
A DAY TO REMEMBER!! 
THIS was APPROVED TODAY! There are no words other than Thank you! to all the doctors, researchers, and everyone who donates. 
The difference this will make in not only mine, but everyone’s life who this will help! For 25 years! this is what we’ve been waiting for. It’s not a cure-but this is sure one of the biggest steps towards one. I can not wait to see how this will affect life. 

Being in the hospital while this is approved(so close to my birthday)-my doctor came in less than an hour after news broke to let me know. He wanted to make sure I was the first to know. 
I feel so blessed to have such an amazing doctor!

Please pray that all of us who qualify-also have insurance that will let us get this medicine! 

Next to the day we can receive it-this is a day to remember!!!
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.
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Soon I will do an update on my latest 14 day hospital stay but this news was more important and I wanted to share my thoughts on “approval day”.
We simply now have to wait for the insurance process to start-which could be months-but there is a light that we all can look forward to.

For now-Thank you to everyone-are fight is far from over but we are making great strides in the right direction every day and we need to celebrate these victories.

~God Bless
Paige 

Monday, October 7, 2019

Do You Ever Get Afraid?

Do I Get Afraid of Hospital Stays?

That is a question I get asked a lot. Do I get afraid? Am I afraid?

The answer-Sometimes-but not for reasons you’d think. We’re all human.

Do I get afraid for hospital stays? No. Hospital stays are so routine for me after almost 25 years that it’s like second nature. I go in knowing that this is MY normal. It’s a way to make me take a break to get better. I go in knowing that it’s to make these beautiful lungs healthier again-to in turn live a longer life. Period. I would/will do anything to keep these precious lungs healthy. 

Am I afraid? Now that could be a loaded question with so many answers. My main answer is sometimes. 
Sometimes I get afraid of maybe not being around as long as I’d like, not hitting all my goals, or achieving all my dreams. 
Sometimes I get afraid of not finding the one yet and when I do not having enough time with them. 

But fact of the matter is those are things NONE of us can control. Only God. 

So after saying all that...am I afraid? No....because I know in my heart that whatever God has planned for me will be what is supposed to happen. 

That may sound crazy to some-but it puts me at ease. 
I am already the person who worries/sometimes stresses over silly things. 

I am NOT perfect by any means. But I have learned that for me-leaving everything up to Gods hands is always the best. 

He helps me not be afraid and to trust in him. 
Now sometimes that is way easier said than done. 

But everyday I remind myself that if I woke up today-I can face whatever is brought my way. 

So; do I get afraid of hospital stays? No
Am I afraid? No

lwe’re all human, but we can’t let our fears get in the way and stop us from living the life we dream. 

~God Bless