This happened yesterday!!! Just now getting it posted on my website.
LUNG FUNCTION 94% up from 73% …..a 21% increase!!!!!!
I haven’t seen the 90s in over 5yrs!!!!!!
God bless Trikafta!!!!
Full clinic update later!!!
Posted this yesterday. Just took a little longer than expected to upload to YouTube
This is what happens when you are having GI issues……an unfinished bag of nutrition and calories lost. FML
Also waking up at 3am feeling overly full and like I’m gonna puke!
Still waiting on a call back from the GI specialist about an appointment. Possible Gastroparesis. This would explain the last few years of symptoms and issues that I thought were my normal digestive problems and having a shit appetite.
It’s very easy in the life of a chronically ill person to be negative, feeling down and unmotivated. I’m here to tell you it happens to everybody, even the best of us who have fought since day one to not let this disease dictate our life.
I spent many years like this because of CF and other things going on in my life. We not only have a disease to battle, we have every day life to battle and the struggles that come along with it (heartbreak, school, work, rebellion, choosing to party, etc).
Mindset is everything. It’s taken me years to prove it to myself no matter how much I knew it to be true, I could just never apply it. I was stuck in a 10yr rut!!! You have to decide is this how I want to spend my life? Am I really going to let this disease win this war? Yea I may of lost a battle or two but this isn’t over, I can’t give up now!
I’m not telling you that I live in a full world of unicorns and rainbows. I still lose my shit, have bad days and can easily fall into a negative state. It’s how we start our day and how we react to challenges, negativity and struggles that truly define us. Some days it’s hard. My husband is a realist and can be king negative at times. I’m the optimist, the it will be ok, we will get through this, positive person in my household for sure.
Even if you react negatively to something, it doesn’t mean your day is shot! Positive affirmations, talking yourself through your reactions, controlling your thoughts and not letting it fully consume you, redirecting yourself to something else (a new goal, next on the to do list) is key. What I’m saying is remove yourself from what is causing this reaction even if its only temporary. An example would be an argument, a project your working on that isn’t going right, bad news from a clinic appointment, a sudden trip to the ER. You need time to process things, distract yourself and regroup your thoughts. Negativity thrives on more negativity. Fear tries to control you especially in those scary situations like ER trips when we aren’t really sure what’s wrong. You have to fight through those situations knowing you can beat this next challenge like you have beaten so many before.
No one can change over night. I’m not saying you’re going to wake up tomorrow and skate through every shitty thing that gets thrown at you with a smile on your face. It’s a little bit of work but I promise you the change you’ll see will be worth it. Start small, even if you change one thing at first like how you start your day. Wake up and while you’re doing your morning treatments, write your to do list or your goals for the day or the month and at least 5 positive affirmations about yourself and your life. Choose not to engage in bullshit with people. I’m the queen of getting sucked into bullshit with people because I like to post and talk politics. I backed off for a while but with everything going on in the world currently I’ve let it get the best of me again. I just need to reaffirm to myself that I will not react to stupidity! LOL!!!
Progress not perfection is important. Build on and celebrate your small victories. We are given one life and we were given this cross to bear by having Cystic Fibrosis. It’s up to us to live our best life and say fuck you CF I’m in control!
“I have Cystic Fibrosis but it doesn’t have me!”
Lots of good news to report! Check it out.
Not a lot to report but good news
Below is my recorded blog on how my day has gone since taking my first dose of the new Cystic Fibrosis drug, Trikafta
My update from this morning about Day 4 of homecare IV meds, Life and more