Day 4 – Trikafta Power

on Feb 4, 2020

A little day four update:

All my stomach and chest muscles are really sore today, sore from deep full body coughs in periodic tidal waves, but it’s a different kind of sore.  It’s like a well used from ringing all the crap out of my body kind of sore vs when I am sometimes so sore from relentless continual  hacking that so many times lead to nothing but some time in the big house (AKA hospital). 

Very honestly the schedule is hard and full.  It currently includes chunks of time of nauseousness and shakiness in various forms, taking their turns emerging, as my body figures out how best to work itself with all of these meds and what’s inside. 

There have also been some amazing moments of noticing over the past few days.  Especially today and yesterday, noticing differences already starting to emerge with our new friend “Power Trikafta” on board. 

I’m feeling differences in my lungs, intestines, ears, sinuses, what feels like cellular openings, easy moments of breath, new moments of breath, peculiar sensations, interesting sensations and movements. 

I feel like my body and I are getting a chance to re-discover ourselves moment by moment, day by day.
I look forward to seeing what I might discover is new or possible each day.  (Truly a good way to live each day actually.  Thank you to Grace for these new experiences, this new time in my life, so that I can remember and re-apply it in other life ahead.) 

I am still very tired.  Sometimes seemingly, especially in the mornings, after the first Trikafta dose.  So so so deeply tired.  It’s like a blanket of tired comes over me, starting out at the head and working it’s way down.
I’m not sure if this is specifically because of Trikafta, or Trikafta with other meds in my system, or just a body that has been through a lot this year, a lot this life time, having some time of “coming down”.
I’m wondering if there are others (that are also on Trikafta) who have felt this.  If there are and you are reading this I would love to know.

I’m feeling things that I didn’t really even know to look for feeling,  if that makes sense. 

I’m waking up to new sensations.  I’m loving this opportunity for my body to discover it’s new sensations and capabilities.
The discovery itself is just so interesting and  so cool!

I love that my mom, and that Ricky are getting to witness some of these kinds of changes, that they get to see my body start to open and experience itself in these new ways.  That after so many years of layers of hard and further challenge, that right now they also get to see and celebrate this.
I love that this time, I get to offer this part of Life experience for them, for me, for everyone that I share with.
I’m cautiously stepping from hoping to knowing that I will have more of this form of goodness to share.   

I’m whispering to my friends who are no longer with their bodies with CF.  I’m sharing and offering up these new sensations to them too. 

I’m grateful.  I’m opening…

More to come… time now to do a neb and take a blood sugar reading. 

With Love,


PS-I think my fur babies are happy I’ve started Trikafta too.
A rare moment of them coming together peacefully in my lap ;).