Lost in the light. Lost in the light. We are all just lost in the light. With all it’s rays and shades and variances. Not recognizing the red in the orange, the blue in the purple. Trying to find our way. We are all just lost in the light.
Lost in the light. Lost in the light. We are all just lost in the light. With all it’s rays and shades and variances. Not recognizing the red in the orange, the blue in the purple. Trying to find our way. We are all just lost in the light.
Journal entry written Feb 1, 2020 I’m feeling so very tired this morning after my morning dose. It’s a different type of tired than I’m used to though. It’s not a worn out coughing all night tired. It’s instead, a deep, warming from inside my head down through my chest blanket of tired. I’m imagining that maybe there’s a relaxation coming over me. A settling of my nervous system, maybe for the first time ever. Maybe my nervous system is saying, “Oh! Something helpful is happening. Something is unlocking. I can come down now.” After 40 years of unfitting, half made, unmoving puzzle pieces, maybe this relaxation wave layer that I’m feeling is actually a reconfiguration leading to relief.
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...
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,...
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...
Hey guys! Below is the link to my clinic update from month 9 of my MAC treatment dance. I’m also excited to share some news about a plan to get this bod to a place where it can try Trikafta! Woo friggin hoo! We’re on our way! Also, I haven’t been writing as much on here lately. I’ve mostly been using the site for updates as I move through this MAC treatment right now. Getting through that and doing what we need to do to land here in Denver have been the priorities. That said, I do miss my written shares from the heart. I feel their call…. and it’s my intention to share more of the written pieces that emerge as well soon. With big, wide open Love, Kori (Music credits: Breathe by Matt Scales (also sung by Tess, Josh, and Rose, all of whom, including Matt have lived with CF) Thank you for this beautiful piece. <3 Here is the link to the youtube...