Revisit Alison’s insights for caregivers traveling abroad for HSCT (replay from S2)

Warrior: Alison Coates
Snowflake: AIMS Charity
HSCT: 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? 

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, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

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Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Resources noted: 

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


Revisit all the hopeful curiosities of Katie’s Hope Journey pre-HSCT (replay from S2)

Warrior: Katie Hominsky
Snowflake: RRMS
HSCT: Chicago, 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? 

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.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

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

Meet Cassidy along her journey of over-achieving before and after HSCT* (Ep. 67)

*This episode contains content that may be alarming to some listeners, including mentions of suicidal ideation. Please check the show notes for more detailed descriptions and take care of yourself*

Warrior: Cassidy V. Chapman
AI: Multiple Sclerosis
HSCT: July 15, 2019
Superpower: Passion for bringing awareness to HSCT

To what extent are you an over-achiever? How open are you to receiving support from others? Where do you find family?

After being diagnosed with MS her first year of law school, Cassidy was initially able to manage her disease with a variety of disease-modifying therapies. Though building a successful career as an attorney came with compounding stress that caused significant relapses which left Cassidy fighting optic neuritis and blindness, it was the fatigue and cognitive impairments that ultimately led her doctor to recommend she stop working. After waiting 33 months to be approved for social security disability, Cassidy found creative ways to stay afloat while managing her relapses and steroid psychosis. Thanks to the guidance of an eleven-year HSCT veteran, once Cassidy decided it was time to pursue HSCT, she surrounded herself with caregivers.

With frank conversation about Cassidy’s experience seeking disability about the side effects of multiple sclerosis and its’ medical treatments, including steroid psychosis that led to homicidal and suicidal ideation (skip 40:00-42:30 and 1:02:00-1:05:05 if you want to avoid these parts of the conversation), this episode offers helpful insights about MS symptoms to look out for both pre- and post-HSCT. Tune in to learn more about Cassidy’s scare at 14 months post-HSCT and how her experience with HSCT has shifted her perspective and her priorities.

Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Learn how Rachel managed CIDP before myeloablative HSCT at the CBCI in Denver (Ep. 66)

Warrior: Rachel Gallery
AI: Chronic Inflammatory Demyelinating Polyneuropathy
HSCT: Oct 19, 2020
Superpower: Empathy

Do you consider yourself a lucky person? How often do you receive treatment for autoimmune disease? How layered is your circle of support?

After spending nearly a year with strange symptom progression, a neurologist was finally able to diagnose Rachel when IVIG helped to offset some of her most problematic symptoms. After five years of managing her disease with IVIG infusions every two weeks, she found herself facing rapid decline, trying a variety of aggressive treatments including cytoxan and rituxan that failed to help. 

Tune in to learn more about the clinical trial at the Colorado Blood Cancer Institute (CBCI) in Denver, and the confidence to get through the myeloablative protocol despite significant complications (namely, graft v. host disease) amid the COVID pandemic. With so many helpful tips for mindset to accept support through the tough times, illuminate invisibilities, and adjust to life with chronic illness, this conversation with Rachel offers practical strategies to make it through some really tough moments along the HSCT path.

 Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Resources:
Colorado Blood Cancer Institute 
HSCT Warriors Podcast

Meet Erin and be inspired to find empathy and connection despite feelings of isolation (Ep. 65)

Warrior: Erin Schoenlein
AI: Multiple Sclerosis
HSCT: March 15, 2020
Superpower: energy to help other people

How wide is your view? Do you know what it feels like to be well? For how long have you been distanced? 

Having been diagnosed with an autoimmune disease in high school, Erin is no stranger to advocacy for well-being and the importance of spinning challenges into positive opportunities. Although she did not qualify for the clinical trials in the United States, Erin researched her options and found herself at Clinica Ruiz just prior to the start of the global pandemic. Erin distracted herself from the chaotic stress of COVID by surrounding herself in a bubble of staying focused on positivity and gratitude expressed by others around her. During this conversation with Erin, hear more about how her experiences in Mexico and her quarantine upon returning home helped motivate her to find inclusive ways to empower others.

Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Resources:
Sail MS
Paavitforward.org
HSCTWarriors.org

Learn from DeWayne’s experience as the first HSCT patient for MS at Cleveland Clinic (Ep. 64 part 1)

Warrior: DeWayne Durr

AI: Multiple Sclerosis

HSCT: Oct 29, 2020

Superpower: Confidence

How often in life have you been first? How do you find confidence along your path?

Check-in with DeWayne to hear more about his experience as the first patient to receive HSCT for Multiple Sclerosis at the Cleveland Clinic. With so many details about his experiences with the myeloablative protocol of the BEAT-MS clinical trial, including securing insurance coverage, the staff and his in-patient experiences, as well as logistics and details about the time spent after discharge in a nearby hotel, DeWayne shares so many valuable insights, this interview will air as a two-part episode.

Tune in this week to hear the details about being in-patient at Cleveland Clinic and logistics for after-care in Cleveland, and next week, join us to hear more about DeWayne’s experience with recovery so far.

Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Resources:
www.rooftopprayerwarrior.com

www.beat-ms.org

Revisit Karin’s journey with systemic lupus that led her to pursue HSCT (replay from S1)

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 the 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.


Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Celebrate scleroderma awareness and revisit our chat with Meghan (replay from S4)

Warrior: Meghan Newell Davis
AI: Scleroderma
HSCT: 1/22/19 at Duke University
Superpower: Unbreakable

Have you ever watched a doctor google your symptoms to find help? How often do you take the little things in life for granted? As you move through life, do you take caution not to ‘poke the bear’?

Copy of Replay Jess F

Celebrating a son just one year younger than her new immune system, Meghan offers our listeners a glimpse into life with a very aggressive form of scleroderma and her experience with HSCT at Duke University. The highly competitive-Ironman-Nutritionist suddenly found her body to be suddenly sore, stiffening and stonelike. As she continued struggling to hide invisible symptoms that were physically shutting down her body, she spent weeks visiting doctors, researching her symptoms, and experimenting with various alternative remedies to find some relief.

Tune in and hear more about the freight train that wrecked Meghan’s capacity to function in everyday life despite not looking sick. Once she was connected with a rheumatologist, Meghan finally had diagnoses of multiple autoimmune diseases and was fast-tracked to HSCT at Duke University. Through HSCT Meghan gained lifelong warrior friends and family, including her doctors, nurses and care team and shares so many valuable insights!

Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind. Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician immediately.

Resources:
Meghan’s race to HSCT
Meghan_fit4life on Instagram
Dr. Twining, Myrtle Beach
Dr. Baker Frost, Medical University of South Carolina

HSCT Warriors Podcast · Celebrate scleroderma awareness and revisit our chat with Meghan (replay from S4)

HSCT Warriors Podcast featured on Causepods!

so grateful for the opportunity to share more information about HSCT and the HSCT Warriors Podcast on the Causepods show… highlighting “the use of podcasts to raise awareness for a good cause... Whether that’s a non-profit, charity, medical cause, social justice movement, or anyone looking to create a positive impact in the world, from the local level to the global population.”

Beyond grateful for all the good people who have helped to make the HSCT Warriors Podcast possible, especially my very good friends Billy Alletzhauser and Jill Ross… fellow warriors Ali Strong and Carol Cosme… and of course, all the brave warriors who have taken time for an interview to share their journey with HSCT. It’s not easy to be vulnerable and share personal stories with an invisible audience, yet I am ever grateful to everyone who shares to help illuminate the invisibilities of autoimmune disease, recognize the possibilities of a future free from disease progression, connect through our shared experience, and advocate for an inclusive society.

So glad you’ve joined us!

Be sure to check out my interview and other stories about good causes at Causepods.org and stay tuned for the upcoming episodes of our Season 2, as well as updates about the exciting new venture, HSCT Warriors, Inc. …

In the meantime, be kind. Be well.

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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