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. 

25. 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 

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.

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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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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 

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 

Strength in Writing

It’s been almost 9 months since I’ve come to my blog to write. 

I’ve started writing drafts and then erased them because it didn’t “feel” right. 

Today I had a routine CF doctors appointment.

But first, 

**lets back up just a little bit to catch everyone up**

January 2019, I started going to a new Cystic Fibrosis Doctor(back where I went when I was originally diagnosed). I found the head CF doctor and inquired. 

At my first appointment I thought to myself-“why did I not switch sooner”, but then reminded myself it’s all in God’s timing and like I always say “everything always happens for a reason”.

This gentleman is amazing. He is thorough, listens to my feelings, ideas and thoughts. 

We bounce ideas off each other. We discuss treatment options. He is laid back but firm. Doesn’t mess around with my lung function(PFT’s) numbers. 

Since January I have now been going to the doctor every two months. 

In March I was hospitalized.

He had my try a liquid form of a medicine(since I’m allergic to most pill form antibiotics). 

In June at my routine yearly physical I was diagnosed with PCOS.

I have been on antibiotics every single month this year except August.

In August my mom and I went on a mini vacation to Savannah, GA. 

It was definitely needed. 

**now that we’re caught up**

Like I mentioned; today I had a routine CF doctor appointment. 

My lung function has been hovering around 73-75%. Not bad-but definitely not numbers I’m content with. 

Today my lung function was 70%.

That raised concern for my doctor and myself. 

He asked what my feelings were. He said he believes I would benefit from IV Medicines and a hospital stay. 

We talked and discussed scheduling an admission again. 

We decided on doing two weeks of oral antibiotics at home. Coming back in to see him in two weeks and he will have a tentative bed reserved for me to admit me. 

For 14 days(as we decided last hospital stay I will stay admitted the whole time to truly get better and not push myself like I sometimes do on home IV’s).

I am planning on getting admitted to get these beautiful lungs healthy. (There is a new exciting medicine coming out sometime next year to help benefit those with the CF mutation I have-so our goal is to keep my lungs the best they can be to have the most benefit when it comes out).

That is the plan for now and I am content and happy with that. 

I trust my doctor 150%. 

But tonight I decided to write.

It has been to long and I’ve been longing to write.

My blog has always been my creative side. Writing for me like I’ve said in the past is therapeutic. 

There is so much “strength in writing”. 

It is a way to put all my feelings on “paper” so to speak. 

Venting, de-stressing, getting my thoughts out. 

My love of Writing is not only a hobby for me-it’s “medicine”

I tend to be a “worrier”, I worry about the unknown, I sometimes stress when I shouldn’t. 

I’m human. 

In November of last year I started a Vlog channel on Youtube(Paige: The Joys of Having CF) and a few months ago I created a Facebook page(The Joys of Having CF).

I update my Vlog occasionally. I post on my Facebook page and my Instagram page(@paigecf94) almost daily. 

But my blog will always be on the top of my list and holds a very special place in my heart. 

I share my thoughts and motivation in hopes to make a difference in people’s lives which I’ve always said is my goal in life. To help people.

 If I can achieve that I believe when I get to heaven God will say(Well done thy good and faithful servant). 

That is my life goal. 

If you’ve followed me for a while you know I LOVE life. 

I try to live my life as if each day was my last. 

God blessed ME with this beautiful illness, and I am very thankful because he trusted me to handle something so precious. 

But still I am human. I worry about petty things. 

I do my best everyday to be my best self. To make a difference in people’s lives. 

I dream every single day. I don’t care what others think about me. I pray everyday for my future and I can not wait to be a wife and mom someday. To live a simple, happy, healthy life. 

That’s it.

But writing gives me strength. It lets me put down my thoughts, and start fresh. 

There is so much strength in a pen(or typing). 

I don’t write drafts. I write my thoughts in the moment.

When things are fresh.

This life is so beautiful. My lungs are so precious and beautiful. I have big big plans. And I believe with God on my side all my dreams will come true. 

Like a quote I posted yesterday:

~I’m not afraid of tomorrow-because I know God is already there~

-God Bless