MAC Treatment Month 9 AND… Trikafta news!!

on Nov 6, 2019

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...

MAC Month 8 (Sept 2019) update from KT

on Oct 27, 2019

Hi Guys! Here’s a belated update from month 8 MAC Attack. (As an aside, “attack” isn’t normally my language of preference, but it just rolls off the tongue so well, and well, I just couldn’t resist.  This said, let’s think like Pac Man styley with the little antibiotic pac man’s gobbling up the remnants of Mac germs and any little MAC ghosts that might be hanging out once they hit their power pellet status.  Yeah.  Ok.  That’s a fun image.  Let’s see that!) AND a special announcement that may start with chicken… and end with butt! For those wondering what the heck I’m talking about see this update to refresh ;). Music Credits: “Bottoms Up” by Trey Songz featuring Niki Minaj “Yesterdays” by Traxx...

From ROC back to Denver….Here We Go!!

on Aug 9, 2019

Well, all good things must come to an end, and so it is for our trip back to Upstate NY. The share is a little late.  It took me some time to be able to get to it and finish it, but we hope you enjoy coming along for our adventure back. Love and gratitude, Team Tolberty Music: Chris and Thomas “Broken Chair” (one of my very favorites!) Paul Simon “Father Daughter” and OPEN HAPPINESS (Coke) Ft. Brendon Urie, Patrick Stump, Travis McCoy, Cee-Lo Green and Janelle Monae

Team R4K Cycle For Life 2019

on Jul 27, 2019

I got to cross the finish line this year! So happy and grateful and honored to be able to make an impact in this way. Sending out a thank you to the organizers and volunteers for this event and a big thank you to the Team R4K riders and all those who donated. I appreciate you all so much. Thank you! Music- “Higher” Flume re-mix by Ta-ku

MAC Clinic Visit 4. The Countdown Begins!

on Jun 28, 2019

No chicken butt shirt, but still reason to celebrate…  

Balance

on Jun 25, 2019

Finding balance in a way that honors my desire to have a big giant “yes” to this life, and still honors what’s possible for this body can be tricky. Here’s a little slice of how I navigate the tightrope. Sometimes I fall off on either side, especially while I am navigating extra treatments and stresses and, gulp, travel. BUT the expression of the beauty of the life that emerges is worth the risk and discernment (that’s the word I was looking for in the video haha). Sometimes what I might be able to say yes to one day is different than what I can say yes to the next, but peace for me means learning to be ok with that. Fighting the body and it’s limitations don’t end up serving me. Fighting the heart and it’s desires don’t serve the me I can be either. So finding that balance, some softness, and trusting in the unfolding Grace I think...

Grace Known

on May 30, 2019

As someone who wants to live full out and also has a seemingly compromised body that I want to do my best to take care of, I sometimes find myself in a place of frustration, disappointment, or regret. I do my best to walk a line of going for it and respecting the needs of this vessel that I live with, but sometimes either I go too far, or maybe Life is just happening, and the body breaks down. This morning, I came up against this familiar place. However, I was able to pause in the midst of it, and find my way back to where It All comes from. A place of gigantic Existence that is nothing less than God (Love/Light…) being expressed in its many forms. This, this Existence, is not changed or diminished by what is physically happening with my body or the emotions, judgements, or fears of my mind. I can bring all of what I feel back to This, let it be seen, held, and absorbed,...

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