Trikafta Eve (or so I thought)

on Feb 14, 2020

I’ve been looking back through my journal, deciding what I want to share and what I still want to hold close, still just for me right now. This entry is from the night before I thought I was starting Trikafta, Jan 28, 2020.  Turns out I didn’t start for two more days due to a body that wasn’t doing so great said planned morning. Alas, here’s the entry from what I thought at the time was my “Trikafta Eve”. Jan 28, 2020 I’m sitting here in my bedroom, looking at a box of Trikafta across from me on my night stand. It is my first box.  The co-pay is $0.  That is unreal to me.  I do not yet know if that will be my monthly co-pay this year or if that will change with the months and as I move in and out of different levels of coverage.  I was told by the pharmacist that the co-pay would be anywhere from $0-4,000.  The fact that it is currently is $0...

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,...

What’s been a happenin….

on Jan 27, 2020

Dear friends, Life has been full on as I’ve been navigating what I was hoping was the beginning of the end of MAC treatment.  So… I have been away from this blog. I was transitioned to a different medication for MAC, in preparation to get me to being able to simultaneously take (drum roll please…..) Trikafta (which I have Booster Jotted up to now be called Trikafta Power).  The trouble is, this new to me med, Clofaz (which I renamed Joy) kicked my butt in some unexpected ways.  One of which is how it has affected my eyes.  So typing or any prolonged time on the computer or phone has not been in my best interest.  It also has seemed to really give my blood sugars an extra roller coaster ride and has added a new level of shakiness in all it’s various forms into my life.  So… it has not been an easy transition. That said, Clofaz AND a very unexpected series...