Trikafta Day 3: I am living in an alternate universe.

I feel like I was blind and now I can see. It’s the most meaningful pivot of my life. It’s astounding, astonishing, amazing, beautiful, shocking, unbelievable, overwhelming, motivating, mind-boggling, staggering, startling, unexpected, awesome, fascinating, marvellous, and truly incredible. I’m running out of words to describe this shift in my health.

I did about a weeks worth of tasks around my house in 2 hours, I kid you not. I removed and stored my two huge deck umbrellas, moved all my deck furniture into storage, moved my planters to the side of the house, got all my leaves picked up, got my compost and recycle out, started in my garage, walked Cali with a friend and walked and talked at the same time, I went upstairs without oxygen, I organized my fridge and now I am blogging. I did this with no oxygen. I had a huge smile on my face for everything I accomplished. It was magnificent. What a freaking day! Probably the most productive day in over three years.

I chatted with my doc and he told me to take it easy and slow down and I instantly said why? I’ve been given a brand new life and I am ready to go. I seriously feel like I’ve been released from prison. Yeah I know I still have shitty lungs but who cares- I can get these airbags back into their best shape with harder workouts, longer walks and faster rows. Will I gain a ton of lung function? No, but they will be the best condition that they can possibly be. I’ve never taken good health for granted and I ain’t stopping now. Nothing I do will be done without a little thank you to God. It’s like how many CFer’s who get a transplant take really good care of themselves in honour of their donor.

Everyone’s mundane tasks used to be an Everest summitted for me. Gruelling and next to impossible. 74 hours ago I could not lift one piece of deck furniture and move it without oxygen, rest breaks and some swearing. That was 74 hours ago. I feel like I really am in another body, an alternate universe, a dream and I feel like its going to come crashing down all around me. This can’t be real.

Everyone I’ve talked to says it just keeps getting better and I’m like “I’m fine with what I’ve got now”. I cannot imagine feeling even better or getting rid of my feeding tube or improving my diabetes or waking up and just start my day sans physio, meds and injections.

Tomorrow I will get on my rower and see how much better I have gotten in three days. I’m keeping expectations low but damn, I’m quite sure I will see a significant improvement.

The mucous has dwindled down to super thin, light green and maybe 20mls today. I had a nap and for the first time in 30 years I didn’t cough. I just slept and breathed. I stopped coughing. Like what the f&*k? The thing that defines me is now gone. That’s how my ex-husband and my family and friends could find me in a store. The headache has gone but the abdominal pain is still there, coming in waves. Not as bad as yesterday but definitely working through something.

I’m going camping this weekend for a week and I have never been more excited to go, ever. As much as I love camping it is still quite taxing on me. I don’t have all my creature comforts and mornings are tougher out there than at home, Don’t really know why but it just is. I get to try out this new body of mine.

I feel so freaking blessed and I realized that God obviously isn’t ready for me just yet. I am assuming I have some big things ahead of me in regards to contributing to this world. I will not waste a minute of it.

Thank you for the outpouring of support. I am so thrilled to share this journey with you all. It’s been such a dark, mean, divided world this past 2 years. We all need a miracle. Until tomorrow remember its the little things, it truly is.

Get busy livin’ or get busy dyin’

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