HSCT Warriors Podcast Ep. 12

Warrior: Kevin

Snowflake: Multiple Sclerosis
HSCT: April 2016, Raffles Medical Center, Singapore
Superpower: Novena to St. Jude

When facing the unknown, are you curious about possibilities or do you fear uncertainties? What is the part of your journey that has become too familiar? How can we support each other to mobilize for different outcomes?

If you’ve ever been curious to know more about potential complications or side effects associated with HSCT, meet Kevin, who faced nearly any possible challenge you could possibly face (e.g. failed mobilization, infection in the blood) with HSCT, including travel across the globe to Singapore. Despite facing such significant challenges, tune in to learn more about Kevin’s journey to halt his MS and his continued dedication to recover his physical abilities, and promote 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 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.

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, #MultipleSclerosis, #MSWarrior #HSCTsnowflakes, #HSCTsuperpowers

Resources:

Raffles Medical Center, Singapore: rafflesmedicalgroup.com
Ohio Facebook group: facebook.com/groups/OhioHSCTgroup/

Zen Jen’s blog: Haltmyms.com

WCPO Cincinnati ABC affiliate: wcpo.com

HSCT Warriors Podcast Ep. 11

Warriors: “Zen” Jen & Sara Leah

Snowflake: RRMS
HSCT: October 18, 2017, Northwestern Memorial Hospital
Superpower: Zen

Do you embrace life’s challenges with open arms? One step at a time? As you find your way along your journey, do you pause to reflect in the moment and express gratitude for those who are along with you?

Learn more about the journey of our very own “Zen” Jen, as she shares the mic for a chat with her dear friend Sara Leah and they find commonalities in their unique experiences with MS. With a fun break from the usual interview protocol, enjoy this conversation from the lens of someone curious to know more about HSCT, and in celebration of Jen’s one-year HSCT birthday.

Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to host this interview live in the Belfry; especially for his efforts to create the soundtrack, record, 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.

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, #MultipleSclerosis, #MSWarrior #HSCTsnowflakes, #HSCTsuperpowers

Resources:
haltmyms.com
hsctwarriorspodcast.com
HSCT at Hoxworth Blood Center, University of Cincinnati
HSCT at Clinica Ruiz, Puebla Mexico

HSCT Warriors Podcast Ep. 10

Warrior: Cecilia

Snowflake: RRMS
HSCT: July 11, 2018, Northwestern Memorial Hospital
Superpower: Connections

How positive is your outlook? How empowered do you feel by your faith and innate resilience? When life seems scattered like a puzzle, how do your pieces fit together?

Tune in to learn more about how Cecilia embraces a positive mindset, regular mantras, and her lens of love to face any challenge that presents itself. Within the first six months post-HSCT, Cecilia has found strength in physical therapy, resilience in connections and sharing her experiences, and even found the balance to get back to work part-time.  

Be sure to explore our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, listen to more episodes, 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, #RRMS, #HSCTsnowflakes, #HSCTsuperpowers

Resources:
Affirmations by Louise Hay


Ep10 Cecilia

HSCT Warriors Podcast Ep. 09

Warrior: Anna

Snowflake: RRMS
HSCT: February 23, 2017, Northwestern Memorial Hospital
Superpower: Running  

How bright is the light you shine on your present situation? What are you committed to, without any doubts or hesitation, to achieve your “next best life”?

After hearing a “no” from her first attempt at HSCT, Anna remained open to try anything (including experimenting with mesenchymal stem cell therapy) to cure her MS. She found herself on Medicare and full-time disability for two years at the end of her late-thirties, so after failing four disease-modifying therapies (DMT) and facing the side-effects of yet another DMT, Anna chose to jump at the chance to revisit her application at Northwestern Memorial.

Tune in to hear more about Anna’s journey with Multiple Sclerosis and the effort she made to prevent her disease from progressing; the “rollercoaster” peaks and valleys of post-HSCT recovery; strategies to battle the chemotherapy-related fatigue, regain confidence, and embrace energy from physical exercise in simple environments; and pursue the best life possible.  

Be sure to explore our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, listen to more episodes, 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, #RRMS, #HSCTsnowflakes, #HSCTsuperpowers

Resources:
Jesus Calling: Everyday Devotions by Sarah Young
Anna’s blog: https://endmyMS.com

HSCTWarriorsPodcast Ep_09

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

RRSpecialEp1

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

HSCT Podcast_Ep.06 Media

 

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?

HSCT Warriors Podcast Ep. 04

Warrior: Dave

Snowflake: RRMS
HSCT: 9/11/17, Chicago
Superpower: Perspective

When you pause to reflect about what has changed during a year, what do you see or feel? If you take time to recognize your own personal successes, have you ever hesitated to share what you find with others?

Meet Dave, a warrior who tried nearly every treatment available to treat his multiple sclerosis before finally receiving HSCT November 11, 2017 at Northwestern Memorial Hospital. Dave used a cane and experienced regular active relapses before transplant, so he was ready for a life-changing event. As he worked to get things in order and prepare for the worst, he ended up surprised when Dr. Burt said to him, “I can help you” without caveat.

Dave approached HSCT with a commitment to “not fight anything” except his eagerness to get back to normal once he returned home. Listen for Dave’s strategies to keep a positive mindset, accept all aspects of any process, “take a beat” and embrace emotions, including the difficult, stressful, and uncomfortable ones. Dave’s story will inspire you to “like yourself more,” embrace family and friends, develop an affinity for unexpected relationships, and experience life with a newfound perspective.

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.

Resource:
Bradberry, T., & Greaves, J. (2009). Emotional Intelligence 2.0. TalentSmart. ISBN-10: 0974320625

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