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
