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...

MAC treatment round 3, visit 3 NJH

on May 22, 2019

Hey guys. Yesterday was visit 3 of this round of MAC treatment at NJH. It was a super long day, but we got some good news. Not quite the news we were most hoping for yet, but still good overall. Hoping for that Chicken Butt shirt really soon though! (if you’re wondering what the heck I’m talking about see https://www.youtube.com/watch?v=mlspc… ) Thanks for watching this little snapshot into this world! Music: Gabrielle Aplin’s HOME, cover by Jasmine Thompson and Forever by Till Death  

Held

on Jul 12, 2018

PICC placement morning 7/11/18. The nerves, the nauseousness, the fear, the heart beat, the intention to stay, meet, be with this/This. Wheeled through the doors, sign the consents, climb up onto the cold table, hand over the arm the body, open inside, feel the octopus tendrils, find the spirals of love.  It’s here, just remember to feel.  The last movements before being still while I am threaded and re-threaded. Strapped down, sterile field on, my face is covered, I find the elephant trunk of the tubing above me, reach in and out at the same time. Open. Find the breath to disperse…spread…soften… I hear a voice, a feeling, a memory that holds me from the beginning, remembering why I came here in the first place.  She/he/they say, through my cells and being, “Ok.  Ready to go to work.” In that instant, the blessed calm comes; the knowingness that...

Sinus Health Post 1, Posts for the CF Community and anyone else who knows the ouch of sinus troubles.

on Jul 18, 2017

Growing up with CF meant BIG SINUS TROUBLE for me.  I’ve had six sinus surgeries.  I think my first one was around age 12.  CF sinus disease can be brutal!  Once infection takes hold in those little cavities it can really wreak havoc, lead to impossible, persistent infection, surgery, and can even affect our lung (and large intestine, but that’s for another post) health.  And the headaches!  Oh the headaches!  Any of you who’ve dealt with CF sinus trouble know exactly what I’m talking about.  By about the age 17, I was at the point where my sinus surgeon told me, “I would just have to accept the fact that I would probably need surgery every six months of my life from then on”. BUT, my last sinus surgery was at age 19 and I have not had one since.  I just turned 38 last month. How did I change my predicted sinus fate? Research, trial and error and re-trial, diligence...

MAC is back…

on Mar 19, 2017

Ok, here’s the deal: I got some tough news a number of weeks ago about MAC potentially being in my life again. I made some choices around that including not putting my energy into that being true because, well, because I felt there was good reason not to. I made the choice to pour myself into the miraculous possibilities of my body and world instead. Since then there have been a few sobering convos and meetings with my docs. More tests, some still on going, and more to come. Unfortunately, I found out Thursday, there is further confirmation that the results were not a fluke (which I and my whole team were thinking and rooting for). There are some proposed approaches that are frankly pretty hard to stomach right now. There are many unanswered questions. I am doing my best to address those, explore many different angles, and keep my focus on what works and what is possible. The...