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?

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

 

 

HSCT Warriors Podcast Ep. 03

Warrior: Ellie

Snowflake: RRMS
HSCT: 6/16/16, Chicago
Superpower: Tuning into the body

Do you know the importance of truly understanding your body? Can you get comfortable with letting go of expectations?

Meet Ellie, a warrior diagnosed with multiple sclerosis who received HSCT at Northwestern Memorial Hospital in June, 2016. Ellie initially found HSCT in 2003 but didn’t find herself ready for the procedure until 2015 after a relapse forced her to stop working.

Determined to “stay the course” and not rush into anything, hear more about the benefits of tuning into and getting to know your body throughout the recovery rollercoaster. Ellie shares some of the strategies she uses to tune in and focus on breathing, healing, and well-being.

Tune in to hear more about Ellie’s journey to embrace uncertainty, learn strategies to support the nervous and autonomic systems, and better get to know your body, nutrition, balance and well-being. Continue following Ellie and her abundance of gratitude on her blog: http://HSCTforMS.com

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:

HeartMath: https://www.heartmath.com

Jiyo: https://jiyo.com/home

YogaGlo: http:www.YogaGlo.com

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

HSCT Warriors Podcast Ep. 02

Warrior: Dustin

Snowflake: RRMS
HSCT: 4/19/16, Chicago
Superpower: Zen

Do you find yourself struggling to adapt with shifting realities of autoimmune disease? Are you looking to find peace in your life? Or get inspired by transformational journeys?

Meet Dustin, a warrior diagnosed with multiple sclerosis who received HSCT at Northwestern Memorial Hospital, four years after his initial diagnosis. His abilities were rapidly declining, he relied on a cane to walk, and was eager to find a “cure for MS.”

His resolve helped him let go of the need to be in control and stop trying to plan for future uncertainties. He was able to allow Dr. Burt to “take the reigns,” and completely trusted the nurses and staff throughout the HSCT process. Hopefully Dustin finds continued healing and someday soon he will be able to accomplish all that he feels ready for.

Tune in to hear Dustin’s journey with HSCT, his secrets to staying positive and strategies to cope during the two-week-plus long hospital stay where “you’re never alone, but you’re always lonely.”

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