In this episode, Kathryn and Boots share stories of how they manage other people's reactions to their heart journeys. Kathryn also shares her journey with Ehlers-danlos syndrome, POTS, Tetralogy of Fallot and Fibryomyalgia. If you have been wondering how to talk to someone dealing with a life changing illness or if you are afraid to share your story, this episode is for you.

Website: The Heart Chamber (theheartchamberpodcast.com)
Transcript: Joyful Beat | The Heart Chamber (theheartchamberpodcast.com)
The Heart Chamber (@theheartchamberpodcast)
Thanks to Michael Moeri for being my right hand man. Michael Moeri - Audio Editor, Podcast Producer and Marketing Director


0:00 intro 2:00 Welcome Kathryn! How Boots found Kathryn via social media 3:00 About Kathryn and her Tetralogy of Fallot and craniosynotosis journey 4:20 She thought her medical journey would be over early in life but she continued to struggle with touch and cyclic vomiting syndrome 5:00 Diagnosed with fibromyalgia and arthritis 5:40 and then a friend mentioned Ehlers-Danlos syndrome to Kathryn which she took to her doctor. The doctor immediately agreed and diagnosed her on the spot at age 22. It all made sense. She was struggling with POTS as well as hypermobility. Covid 6:40 Kathryn contracted Covid which negatively affected her medication, Midodrine, from treating her POTS 8:50 Ehlers-Danlos syndrome diagnosis 10:30 Fibromyalgia diagnosis 12:00 Kathryn’s biggest shift with the medical community happened this past year after having both hips reconstructed due to collagen malfunction. 14:15 A heart MRI is ordered at UCLA and her life takes a turn 15:50 She learns she has pectus excavatum at age 25 which impacted her right ventricle 20:00 surgery is not possible to correct the pectus excavatum 22:00 Her struggle with endometriosis 24:00 The opportunity to practice radical acceptance over and over again 26:00 finding her specialist at UCLA 28:00 “but you look so young and healthy” 30:00 advocating for mental health therapy 31:00 confronting our mortality 32:00 What do you need to hear instead? 35:00 “I don’t know what to say but I am here with you.” 37:00 Boots shares her experience with meeting others where they are in their own journeys 39:00 Kathryn shares her struggle with working with others older than her. 42:00 “I’m no longer threatening. Now I am an inspiration.” 43:00 “I can’t control other people’s perceptions of me.” 44:00 Why Kathryn “came out” about her medical journey 46:30 Her life as a horse rider and how her condition affects her riding. 48:00 The power of sharing our stories 49:00 Boots talks about the power of grace