Season 2, Ep. 4: Learn more about CIDP with Chris

Snowflake: CIDP (chronic inflammatory demyelinating polyneuropathy)
HSCT: August 14, 2018
Superpower: ability to walk again

Have you ever lingered on the brink of life? Or wondered why diagnosis by exclusion takes so long? How much energy would you have to spin your wheels?

HSCT Ep 2-4 Chris Masters

Meet Chris, a physical therapist familiar with physical movement, injury, and the understanding that when numbness, tingling, and pain consumed his abilities to move, he needed to fast-track some answers. Despite the shuffle from doctor to doctor without diagnosis, once his body completely shut down while driving to work, Chris and his wife knew they had to find their own answers and fully adorn the role of advocacy.

Tune in to learn more about the back-and-forth Chris experienced along his path of diagnosis with CIDP that led him to HSCT, the concern for others struggling to find the right diagnosis, the importance of self-advocacy, and the spirit of hope in sharing awareness.

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 noted:
GBS/CIDP Foundation: https://www.gbs-cidp.org/

Season 2, Ep. 3: HSCT Caregiver and AIMS Charity co-founder, Alison

Snowflake: AIMS Charity, UK
HSCT: MS Caregiver
Superpower: Dedication

Have you considered the possibilities of traveling abroad to pursue HSCT to halt your autoimmune disease? Are you striving to overcome obstacles like funding or researching HSCT? How do you turn a challenge into opportunity for others?

HSCT Ep 2-3 Alison Coates(2)

Meet Alison, a caregiver for her warrior husband who was diagnosed with multiple sclerosis in 2010 and experienced significant declines in a short time. Once they determined HSCT would be the best avenue for treatment, they struggled to be accepted to their local clinic in the United Kingdom. After fundraising to pursue HSCT at Clinica Ruiz in Puebla Mexico, they were finally accepted for treatment in the UK and allocated the dollars already raised to begin AIMS; the world’s first charity to support individuals in their pursuit of HSCT.

Tune in to learn more about how Alison came to co-found AIMS, the world’s first registered charity to support UK residents with Autoimmune Disease and Multiple Sclerosis, with an emphasis on 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.

Resources noted:
AIMS Charity
Symptom Checker
Clinica Ruiz, Puebla, Mexico
Aa Maximov Hospital, Moscow Russia

Hosted by: Dr. Jen Stansbury Koenig aka “Zen Jen”
Tags: #HSCT, #warriors, #HSCTWarriors #HSCTWarriorsPodcast #podcast #autoimmunedisease, #RRMS, #MS #multiplesclerosis, #lupus, #scleroderma, #cidp, #type1diabetes, #stiffpersonsyndrome, #rheumatoidarthritis, #symptoms, #aisymptoms, #HSCTsnowflakes, #HSCTsuperpowers, #snowflakes, #superpowers #aimscharity #AIMS, #clinicaruiz, #hsctmexico, #doctorruizargüelles, #doctorruiz, #symptomchecker, #improvement

Season 2, Ep. 2: Katie’s Hope Journey

Snowflake: RRMS
HSCT: Chicago, scheduled in March 2019
Superpower: walk with God

Where do you find confidence to move forward? How do you take the reins and find the right mindset? Who do you consider to be family?

HSCT Ep 2-2 Katie(1)

Join us along Katie’s Hope Journey and learn from this interview with our first HSCT Hopeful. After spending 9 years battling multiple sclerosis, Katie found the mindset and the communal support to tackle HSCT head on. Despite her roller coaster of seeking insurance approval, the denial that led to fundraising and efforts of advocacy, Katie is now scheduled for pretesting and if all goes well, to undergo HSCT in March, 2019.

Tune in and learn strategies for fundraising, answers to lingering questions, and how connecting with other HSCT veterans helped Katie build genuine excitement for 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.

Resources:
Personal blog: Katie’s Hope Journey to end her MS
End my MS blog: by Anna Wise

Hosted by: Dr. Jen Stansbury Koenig aka “Zen Jen”
Tags: #HSCT, #HSCTWarriors #HSCTWarriorsPodcast, #warriors, #podcast, #autoimmunedisease, #RRMS, #MS, #HSCTsnowflakes, #HSCTsuperpowers, #snowflakes, #superpowers

Season 2, Episode 1: Update with AliStrong

Snowflake: RRMS
HSCT: 11/6/17
Superpower: Gratitude

Where do you find gratitude in life? Are you just surviving in life, or are you thriving?

HSCT Ep 2-1 Ali

Tune in for updates from Ali Strong and find out what our first HSCT Warrior has been up to since her first interview. Find out more about the healing that Ali has experienced, her training and research to grow her #alistrong business, and get inspired to shift from just surviving to thriving.

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.

almost there…

… and so grateful for the space to create Season 2!! While we’ve been busy in the recording studio, we’ve also been working on a new logo and are excited to be near ready to launch our new season with a new look. We hope you stay tuned and if you find a moment, share your feedback… what has been your favorite episode so far? Is this one of them?

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?

hsct ep 04 dave

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

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

Ep 11 Zen Jen

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