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 of new MAC culture arrivals (saying it this way does not really do justice to the heart break, heart sink that goes along with these new cultures after being clear for almost a year in treatment again) launched me in to an earlier than expected Trikafta intro.

THAT said, all of this is one big experiment.  Mixing all of these meds together and seeing what happens, what my body is able to tolerate and do for itself with this med cocktail and it’s new super power friend, is a big hope filled unknown.

The hope is, that Trikafta, plus MAC regimen, plus other CF meds and inhaled antibiotic will be what it takes for me to help whatever this recent MAC visitor is to find it’s way out.
Eject! No more vacancy at the Inn.
In fact, the Inn is going through renovations to perhaps become a different kind of something.  We do not know what yet, but I am sure my dear MAC buddies that you would be much happier back in the soil somewhere perhaps helping Mother Earth compost some aspect of herself or something else brilliant that you could be doing.
Yes, management sends you on your way (hopefully very soon) and recommends you don’t plan on coming back again as according to what research says, you will not find the new renovations as hospitable.  Don’t let the door hit you on the way out you little dickens!!!!

Anyhow, there is more to say than I possibly could today with the energy I have left before it is time for my next antibiotic and food.
This was not what I thought was happening.
This is not how I pictured coming to and being with Trikafta for the first time (once there was even a Trikafta to picture), but Trikafta Power is happening.  It will be added into my mix, and I am grateful for this.  In fact, without it, things would be looking pretty darn dim with these new cultures emerging after this year of everything I have given to an attempt to be without them.

Instead, I write to you With Love (all ways) and some optimism and hope.