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.

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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:
Colorado Blood Cancer Institute 
HSCT Warriors Podcast

Continue along Joceline’s journey and learn the practice to work-around covid (Ep. 62 part 2)

Warrior: Joceline
AI: Multiple Sclerosis
HSCT: soon in 2021?
Superpowers: doing nothing

How comfortable are you with uncertainty? Are you able to leave the unknown alone? How do you find patience when you find yourself on the brink?

Picking up where we left off in this two-part episode, tune in to learn more about how Joceline reacted to the idea of incorporating a wheelchair as an assistive device, how she continues to manage her multiple sclerosis as she awaits HSCT, and the practices she has learned through various resources and connections. As a nurse’s assistant by training, Joceline continues detailing her journey beyond diagnosis, attempts at treatment, and pursuit of HSCT, including sharing her strategies for fundraising and finding patience with lockdown in the UK while awaiting the Russian border to open.

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:
HSCT Moscow
MS Tripping on Air Instagram
HSCT Warriors Podcast
HSCT Warriors, Inc.

Join Christy on her way to Monterrey and learn more about the power of connections (Ep. 60)

Warrior: Christy Miller Kuziensky
AI: Multiple Sclerosis
HSCT: February 2021 in Monterrey
Superpowers: patience and trust in Clinica Ruiz

Have you been fortunate enough to find confidence in your big decisions? How has patience served you along your journey? Are you comfortable showing up with no expectations?

With arm numbness that led to her diagnosis at the age of 24, Christy experienced some time without many MS symptoms and was doing her best to be adventurous and live a full life. Until she found herself in the outback of Australia for an outdoor teaching experience, hit with a terrible flare and optic neuritis that forced her on a return flight to the US within 24 hours. As an avid believer in the body’s capacity to heal itself, Christy spent two decades pursuing natural therapies to treat her MS symptoms, including acupuncture, Chi Gong, tapeworms, and bee sting therapy.

Tune in to learn more about how Christy found HSCT and faced her doubts to fundraise her way to Clinica Ruiz in Monterrey. With great tips for narrating her 26 year journey with MS avoiding disease modifying therapies and generating support for her treatment, Christy’s journey helps to reinforce the power of networking and sharing connection with 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:
Clinica Ruiz: https://hsctmexico.com
HSCT Warriors: https://HSCTWarriors.org

Meet Ovi on her way to Puebla and learn what it means to be strong-strong (Ep. 59)

Warrior: Ovi James
AI: Primary Progressive Multiple Sclerosis
HSCT: February 2021
Superpower: Strength, Bravery, Grit, Courage

When faced with adversity, are you able to advocate for yourself? Are you someone who can find gratitude often? What gifts can you share with the world?

After years of terrible headaches and issues with standing and walking, Ovi ended up losing her job and her home which caused significant relapses that rendered her disabled. As a single mother, Ovi’s goal was to focus on the positive and help her son “see the light at the end of the tunnel” even though she struggled to understand everything that was going on as her family chose not to support her. With the support of various shelters and physical, occupational, and mental health therapies, Ovi was able to focus on healing and learning how to better advocate for herself. She eventually found a rheumatologist who was able to see she was struggling with more than fibromyalgia and scheduled the MRI that led to her multiple sclerosis diagnosis.

Although this interview occurred the weekend that Ovi was preparing to head to Clinica Ruiz in Mexico, it is airing while she is currently undergoing treatment and could use continued support from our HSCT community. Tune in and learn more about Ovi’s journey and how she found strength in being properly diagnosed, and keep such a positive outlook on life and how she turned inward to focus on her gifts in order to actualize the possibilities of pursuing 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.


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:
Social media YouTube: @ovijames and Instagram: @itsovijames
Clinica Ruiz: https://hsctmexico.com
HSCT Warriors: https://HSCTWarriors.org

Welcoming Season 6 and personal growth with Ali Strong (Ep. 58)

Warrior: Ali Roberts
AI: Multiple Sclerosis
HSCT: 11/6/17
Superpower: Gratitude

How often do you set intentions? Are you comfortable stepping into the unknown? How easy is it to consider yourself first?

Our season openers would not be the same without checking in with Ali Strong about her experiences post-HSCT with diet and nutrition, exercise, mindset, wellness, and personal challenges to continue promoting wellness, health and longevity. Check in with Ali to reflect on all that has changed during her experience with HSCT recovery. Join us for this informative, authentic, and engaging dialog that highlights the importance of reaching out for help.

Please share your ideas for upcoming episodes 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 with contact information for HSCT clinics. 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 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:
AliStrong: facebook.com/pages/AliStrong
HSCT Warriors, Inc.: https://hsctwarriors.org
Genomic sequencing: https://yourgenomicresource.com/

Revisit Dave’s reflective journey through HSCT and gain valuable strategies

Warrior: Dave Carey
AI: Relapsing Remitting Multiple Sclerosis
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 to Dave’s strategies for keeping a positive mindset, accept all aspects of the process, “take a beat” and embrace the emotions including the difficult, stressful, or 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

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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.

Revisit Ellie’s journey with HSCT and get comfortable to “let go of expectations”

Warrior: Ellie Baum
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 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, shared in the list of resources below.

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 immediately.

Resources noted: 
Ellie’s blog: http://HSCTforMS.com
HeartMath: https://www.heartmath.com
Jiyo: https://jiyo.com/home
YogaGlo: http:www.YogaGlo.com

Revisit important insights shared by Dustin in this replay of our second interview

Warrior: Dustin Fairchild
AI: Relapsing Remitting Multiple Sclerosis
HSCT: 4/19/17, 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.

_________________________________

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 Sagirah ran her way to HSCT by defining her own course committed to success (Ep. 56)

Warrior: Sagirah Ahmed Norris
AI: Multiple Sclerosis
HSCT: Clinica Ruiz, January 2020
Superpower: flexibility

Are you someone who prefers to schedule a plan for every detail in life? When your plans are suddenly interrupted by disease, are you flexible enough to define a new path? Are you confident sticking with a decision, despite others’ opinions that might be contrary?

After first being diagnosed, Sagirah found herself more driven than ever to complete life goals ahead of schedule while she was able, including travel to foreign countries to run marathons. Once her symptoms began matching what her doctor projected for her years down the road, she happened upon HSCT by chance while in Europe. After returning home, Sagirah did more research and then talked with her doctor, only to be told that HSCT wasn’t an option for her, particularly the kind of HSCT that involved leaving the country.

Tune in to learn more about how Sagirah defined her path to HSCT, the flexibility she gained throughout her experience, and whether she qualified for the Boston Marathon even before her one-year HSCT birthday.

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:
Clinica Ruiz
HSCT Warriors, Inc.

Learn more from Chelsey about her solo-trek to Moscow and efforts to move, live, and prosper

Warrior: Chelsey Bell
AI: RRMS
HSCT: 7/11/18
Superpower: Self awareness

How often do you find time to reflect on what works for your body? Are you able to truly appreciate time with yourself? How does it feel to connect with someone else over commonalities?

Sharing insights to her solo experience getting to Moscow, Chelsey offers so much inspiration for the importance of mindset, taking time to figure out what works, and finding lessons from her younger self, and accepting challenges without holding on to frustration. With updates on her fundraising experience and securing an Alinker to promote her recovery, Chelsey shares an abundance of wisdom and resources.

Tune in to hear more about Chelsey’s journey to Moscow for HSCT and how she is faring after two years post-transplant. 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:
Eye mask
The Alinker
Move, Live, Prosper