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  

on May 16, 2019

Hi guys! This one’s for my fellow humans who are living with Cystic Fibrosis. Those who live with CF know that airway clearance is a big deal. It’s something that’s talked about from the moment of we are diagnosed and is an important part of keeping things moving in our lungs. One of my approaches to airway clearance is through Continuum. It gets deeper movement for me than any vest session ever has to be honest and it’s one of my main ways I take care of myself (and the world, but that’s for another video). Continuum sounding has also really helped me improve my FEV1 and with that dreaded air trapping that can be such a part of life with lungs with CF. I’ve also found that I can move and breathe in ways that I had no idea were possible. It’s pretty awesome. I mention in the video that I think it’s better to learn in person, but as we all...

A Day In The Life Navigating The Medical System…

on May 9, 2019

A little breath, some blblblblblblblblbl@%#, some space, and of course fur baby snuggles get me through… Until tomorrow anyway ;)~  

a gentle whisper…”don’t miss it”.

on May 6, 2019

I sometimes have these time periods in my life where I really feel the preciousness of the moments that I get to live. I think the first time that I really started recognizing this feeling or having this awareness, that I can remember, was when I was in third grade.  I remember walking home from school with my friends and thinking, this moment, with these people, with this feeling, will never happen again.  I remember intentionally taking in that time, savoring it in it’s preciousness. I think I’ve always had an underlying appreciation for life, but there are time periods where it’s so tangible, in the forefront of my experience. Sometimes it’s been time with friends or family.  Watching my little sister dance, or taking my little brother trick or treating, as a tiny peanut, in his fire fighter costume come to mind. Celebrating people who were strangers 48 hours...

A Day In The Life…. MAC Dance Clinic Day

on Apr 10, 2019

Clinic visit 3 while in MAC treatment at NJH. I was hoping for the news that we could start the year count down, but I guess we’re not quite there yet, but as you’ll see at the end of the video I have a special treat planned for once we do ;). All in all, this body is hanging in there for sure, doing the deal and getting through.  

shazoopdy doo!

on Apr 9, 2019

It took a little recognition and motivation, but definitely worth the twirl. 🤸‍♀️✨

Meeting fear, knowing Love.

on Mar 23, 2019

I woke up sick to my stomach, nothing super new while in this treatment, but this morning I also had an icy hot tingling sensation on the back of my neck and in between my shoulder blades. It’s so interesting and strange and I also felt fear. What IS all of this? I’ve also spent the last two days between the CF clinic and the eye doctor, and will return Monday (after giving one of the meds a rest over the weekend). I’ve had some eye challenge and pain and they want to make sure the drugs aren’t doing damage to my eyes. (The good news here is that the preliminary testing looks like things are ok in that department. Tests Monday are to confirm this.) Anyway, I share this as a background to say that I’m noticing I have not fully conquered my fear reflex yet. I still have some fear of what these drugs running through my system can do, or may be are doing. What is this strong (and my mind...