Special Episode 0A: Radically Rooted

Have you suddenly found yourself transformed, yet distracted by old habits or routines that don’t align with your transformation? Are you striving to find the mindset for self-care, compassion for yourself, empathy for others? Do you find anxiety or calm when you consider caregiving to support yourself or a loved one through the HSCT journey? Have you found yourself transformed by HSCT, though not quite sure how to support continued healing?  

Consider this special episode a “check-in” on our progress, awareness of where we’ve been and where we’re heading, reminders to meet ourselves where we are to practice acceptance and empathy, and awaken our capacity to heal at the cellular level…

It has been quite an honor to connect with the inspiring journeys of so many incredible people and I am beyond grateful for the opportunity to serve our community and help illuminate the invisibilities of autoimmune disease. Having reached nearly 4,000 people from at least 15 countries around the world, it is exciting to imagine the possibilities when we find growth and connection in our shared experiences.  

I’ve received feedback and requests for an episode to explain in detail, ‘What is HSCT?’ (quite simply, obliteration of a diseased immune system by chemotherapy followed by the introduction of one’s own stem cells that “reboot” the body to develop a new immune system free from diseased cells, understood further through research)… or episodes to explain what to expect when you show up for evaluation, or even mobilization…  

We hear these requests and while the protocols around the world for HSCT are unique, we acknowledge that uncertainty and unpredictability can be a tough experience for people to navigate. We hope to offer more specifics – developing new episodes with a panel of Warriors to answer your questions from multiple perspectives later this fall – and remain mindful that an underlying goal of this podcast is to develop collective intelligence. In order to develop collective knowledge and understanding of HSCT, it is imperative to keep communicating, listening, and sharing the unique stories that evidence strategies that work, and we hope to hear more from our listeners – always feel welcome to share your questions or feedback.  

I started this podcast to support individuals (veterans, hopefuls and caregivers) through the HSCT journey, lift up voices to illuminate invisibilities, and help us find commonality in our humanity along the journey of autoimmune disease. To lend a platform for HSCT Warriors to offer insights that create connections, reveal grace, promote wellness and cultivate well-being. To shine their light and share strategies that promote transformation, healing, and wellness. To help HSCT hopefuls and caregivers be inspired and know they are not alone. To inspire listeners to recognize the possibilities of a future free from disease progression, connect through our shared experiences, and advocate for an inclusive society…

Very much aligned with this vision, I am excited to announce the integration of various special episodes – this fall we will engage with a panel of HSCT Warriors to answer your direct questions, so be sure to submit any questions that you have about HSCT. We’re also introducing a series of intermittent new episodes designed to offer insight and connection by promoting radical healing and wellness.

Leading the way is Jessica Lichaa, founder of Solid Roots yoga studio in Lexington, Kentucky and creator of Radically Rooted: Embodied Yoga and Lifestyle, a training initiative offering a wealth of resources and practices to develop self-compassion and awaken the caregiving area of the brain; incorporate body-based self-care routines into daily life; awaken the somatic-sensory areas of the brain, and promote neuroplasticity to heal the damaged holding patterns of autoimmune disease.

Join us as Jessica shares more about her vision for Radically Rooted, how radical self-care practices can support HSCT veterans with continued healing, support HSCT hopefuls in their efforts to maximize health and wellness, and support HSCT caregivers to provide and nurture with compassion and empathy. Join us for a simple, guided self-care practice… tune in and expand your capacity to heal at the cellular level.

Take a moment to leave a review because your feedback will help to develop even better episodes, and your ratings will help other people find the show. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, edit, and perfect the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.

Stay tuned for another special episode highlighting another Radically Rooted embodied self-care practice… until then, be sure to listen next Wednesday for the journey of another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.

Be kind. Be well.

Hosted by: Dr. Jen Stansbury Koenig aka “Zen Jen”

Tags: #HSCT, #warriors, #RadicallyRooted, #radicaltransformation, #embodiedselfcare #snowflakes, #superpowers

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HSCT Warriors Podcast Ep. 08

Warrior: Karin

Snowflake: Systemic Lupus
HSCT: December 10, 2015, Northwestern Memorial
Superpower: Empathy

Do you tend to put yourself last on your to-do list? Have you ever been at the point in your life when you realize, “This is for the birds!” or feel ready to get on with it [life] already?

Karin’s experience with Systemic Lupus left her bandaged and barely recognizable. Failed medication after another, she realized that her autoimmune disease was “for the birds.” Despite the fear of being away from her busy life for too long, Karin found herself tired of her disease and encourages listeners to “take care of number one first!”

Tune in to learn more about how Karin harnessed positive energy during HSCT and shifted to a new normal of patience, appreciation for the things she used to take for granted, and found strength to get back to work within just 2 months post-HSCT.

Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, and access the latest HSCT research and resources. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, edit, and produce the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.

Take a moment to leave a review because your feedback will help to develop even better episodes, and your ratings will help other people find the show. Tune in next Wednesday for a brand new episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind. Be well.

Hosted by: Dr. Jen Stansbury Koenig aka “Zen Jen”
Tags: #HSCT, #HSCTwarriors, #autoimmunedisease, #SystemicLupus, #HSCTsnowflakes, #HSCTsuperpowers

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HSCT Warriors Podcast Ep. 07

Warrior: Julie

Snowflake: RRMS
HSCT: February 19, 2018, Northwestern Memorial
Superpowers: Empathy and ability to “not sweat the small stuff”

Are you a goal-oriented person who likes to create plans and back-up plans to the plans for every aspect of life? Have your plans been significantly detoured by your experience with autoimmune disease?

As a young warrior with brilliant energy, Julie shines her light on the importance of managing stress in order to negotiate the realities of unpredictability. She very quickly realized the reality that as a progressive disease, MS created daily fear that “the next day could have been the day when I woke up and couldn’t walk again.” Within two short years of diagnosis in 2016, Julie felt completely defeated by MS until she embraced hope as a mantra to navigate life and hasn’t let it go throughout her HSCT journey. Tune in to learn more about Julie’s shifting perspectives and find wisdom that might take others a lifetime to learn.

Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, and access the latest HSCT research and resources. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, edit, and produce the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.

Take a moment to leave a review because your feedback will help to develop even better episodes, and your ratings will help other people find the show. Tune in next Wednesday for a brand new episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind. Be well.

Resources:

Blindsided, Richard Cohen
Chasing Hope, Richard Cohen
Julie’s blog: MakingSenseofMS.com
FB group: We’re F*%!^’in MS Warriors

Hosted by: Dr. Jen Stansbury Koenig aka “Zen Jen”
Tags: #HSCT, #HSCTwarriors, #autoimmunedisease, #RRMS, #HSCTsnowflakes, #HSCTsuperpowers

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HSCT Warriors Podcast Ep. 06

Warrior: Ron

Snowflake: RRMS
HSCT: May 6, 2017, Puebla, Mexico
Superpower: Advocacy for HSCT

Have you ever learned something that left you at a loss for words? Found yourself tied to the railroad tracks looking for a way to stop the oncoming train?

Meet Ron, a warrior who invested in the “short term pain for long term gain” of HSCT and found courage to face his fears, doubts, and misconceptions in order to commit to Clinica Ruiz in Puebla, Mexico. As an American citizen residing in Canada, he unexpectedly found an extended family and friends in Mexico.

Ron leaped into his journey without looking back, continues to grow his family by embracing a positive outlook, and focusing on the small things to appreciate in life. Tune in to hear Ron’s tips and tricks, encouragement to pursue objective research, and strategies to support a healthy outlook in recovery.

Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, edit, and produce the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.

Take a moment to leave a review because your feedback will help to develop even better episodes, and your ratings will help other people find the show. Tune in next Wednesday for a brand new episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind. Be well.

Resources:

Ron’s blog: ronniesmstrek.mozello.com
Heavy Metal testing: https://www.doctorsdata.com/urine-toxic-metals/

Hosted by: Dr. Jen Stansbury Koenig aka “Zen Jen”
Tags: #HSCT, #HSCTwarriors, #autoimmunedisease, #RRMS, #HSCTsnowflakes, #HSCTsuperpowers

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Reflections and Invitations

What an exciting first month of the HSCT Warriors Podcast! Reaching nearly 4,000 people in 12 countries around the world, it is exciting to connect through our unique stories and our shared experiences.

So far, we’ve featured stories from good work in Chicago to battle Multiple Sclerosis and Stiff Person Syndrome… next month we will hear journeys of HSCT Warriors who traveled to Mexico and Singapore, learn more about Lupus, and uncover additional resources.

As we continue to grow our Warrior community, we invite you to connect in new ways.  If you would like to share your journey on the podcast, please sign up to be interviewed! We ask that you extend the invitation to other Warriors so that we can highlight more journeys and ideas, targeting specific questions or feedback. We’re creating a panel of HSCT Veterans to offer insight from multiple perspectives, so if there are questions that you would like answered, we invite you to complete this brief “Ask the HSCT Warrior” survey and stay tuned as we develop new special episodes.

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We hope our listeners consider each episode an invitation to help illuminate the invisibilities of autoimmune disease, recognize the possibilities of a future free from disease progression, connect through our shared experiences, and advocate for an inclusive society.

Next month, we’re excited to feature special episodes designed to bring awareness to embodied self-care practices. The special episodes will highlight the science behind finding homeostasis, regulating our nervous systems, healing our tissues, and cultivating neuroplasticity. Offering guided self-care practices intended to support all Warriors (including HSCT hopefuls, veterans, and caregivers) along their journey, we hope all of our listeners will benefit from finding space to be attuned.

In the meantime, be sure to subscribe for weekly episodes highlighting new HSCT Warriors’ snowflakes and superpowers, or share a rating/review on iTunes or SoundCloud.

Thank you for being a part of our HSCT Warrior community!

HSCT Warriors Podcast Ep. 05*

Warrior: Denise

Snowflake: Stiff Person Syndrome
HSCT: 9/12/17, Chicago
Superpower: Increased empathy

Have you ever found yourself distracted by concern for the people in your life that are stressed about your condition? Do you question whether the resources you find when researching your condition are of comparable quality to the resources your doctors can access? Have you learned how to embrace the courage to make your own decisions in healthcare?  

Be inspired to take charge of your health when you meet Denise, a warrior who tapped into her 35 years of service as a trauma-care nurse when diagnosed with Stiff Person Syndrome. Once she started researching the disease, eventual progression, treatment options (e.g. IVIG, plasmapharesis, valium) and their respective side-effects, she informed her neurologist that HSCT would be the only option forward she found to be acceptable.

Tune in to learn strategies for handling the logistics of HSCT, including the importance of building a strong support team, knowing your limits, and finding a purpose. Denise shares insights that help to promote her mental, emotional, and physical recoveries.

*Please forgive the muffled audio of the first few minutes… the home studio operator issues resolve at 8:40. Extra special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, edit, and produce the audio to make this podcast possible, as Jen continues to find her way with the studio equipment! You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.

Take a moment to leave a review because your feedback will help to develop even better episodes, and your ratings will help other people find the show. Tune in next Wednesday for a brand new episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind. Be well.

Hosted by: Dr. Jen Stansbury Koenig aka “Zen Jen”
Tags: #HSCT, #HSCTwarriors, #autoimmunedisease, #stiffpersonsyndrome, #HSCTsnowflakes, #HSCTsuperpowers

Have you learned to embrace the courage to make your own decisions in healthcare?