Trikafta: Day 6- No Pain No Gain

Ok so the sinus pain is diabolical. Even on massive pain meds it’s still nauseating. Doc says it’s either the mucocele sitting on optic nerve is expanding or contracting and both are super painful. I’m hoping it’s contracting and maybe disappears. Ha not likely. It may shrink…maybe. So other than being sidelined with this pain, it’s been a great day. My favorite part…

Singing in the car driving out to the campsite! Yeah it was glorious. I love singing but I had been reduced to lip syncing due to lack of air for most of my adult life. Now, 6 days later, I am holding notes, managing an entire chorus without a breath and catching a quick deep breath to keep going. Something I never thought I could do again.

Singing Badly

Got to the campsite and took Cali for a nice long walk without the broken lungs making it a nightmare to do. Did all my camp stuff with ease, including laying in my hammock on my back and not choking on the lung junk. It’s the little things.

I’m looking forward to a week away to just be and breathe. Started some pranayama breathing techniques to relearn how to breathe. it was easy and effective. Keeping this a short one as it hurts to read the words. My eyes are continually watering and I keep wincing from the pain. I know I will get through this, I’ve been through a lot worse, but I hope it eases up so I can keep finding all this joy.

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