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

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

Continue learning from DeWayne’s experience with myeloablative HSCT despite COVID (Ep. 64 part 2)

Warrior: DeWayne Durr
AI: Multiple Sclerosis
HSCT: Oct 29, 2020
Superpower: Confidence

How supported do you feel? To what extent do you think about each step that lies ahead? Do you wait to share your gratitude?

Continuing from where we left off in this two part episode, tune in to learn from DeWayne as he shares more about his experience navigating his return to work, changes with his diet, and considerations for health and wellness while in the early stages of recovery from the myeloablative protocol at Cleveland Clinic.  

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.hsctwarriors.org

Be inspired by Vic’s resolve, despite the naysayers and positive COVID tests (Ep. 63)

Warrior: Vic Bonilla
AI: Multiple Sclerosis
HSCT: Oct 2020
Superpower: unbreakable resolve

Have you ever felt like an observer of your own life? Have you stared down the barrel of mortality? Is the patience you have with others, the same, greater, or less than the patience you have with yourself? 

Within a few months of being diagnosed with multiple sclerosis, Vic was connected with someone who was transplanted in Russia ten years ago and immediately began researching HSCT. Once he made his way to Clinica Ruiz for his treatment, he and his brother tested positive for COVID and opted to quarantine in Mexico before returning to Clinica Ruiz for HSCT. By this time, Vic’s brother needed to return to the US, and thankfully Vic was able to hire a caregiver.

Tune in to learn more about Vic’s experience with his caregiver in Puebla, his journey with the MS symptoms that caught him by surprise, his extensive research into HSCT, how things are faring nearly six-months post-HSCT, and the unexpected outcomes he continues to enjoy.

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.

Enjoy Joceline’s reflections and find compassion for just wanting to feel normal (Ep. 62 part 1)

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

How do you establish trust in the systems? How many doctors have you fired? How do you find patience when you find yourself on the brink?

After initially being brushed off by doctors, once diagnosed with multiple sclerosis, Joceline found she wasn’t interested in pursuing medication for what she felt doctors knew very little about at the time. As she chose to pursue a natural course of treatment with Chi Gong, diet, and acupuncture, Joceline offers powerful reflections with the wisdom of hindsight in finding compassion for her younger self, who just wanted to feel ‘normal’ despite her diagnosis. 

Tune in this week to learn how after eight years of managing the diagnosis with alternative narratives and symptom etiologies, Joceline finally experienced her diagnosis-moment after finding a neurologist who appeared genuinely concerned for her well-being. Sharing details about the ups and downs of relapses, rejecting medications, and navigating modifications to walking, working, and support by the NHS medical professionals, this two-part episode offers a wealth of information and insights along the road to HSCT. As a nurse’s assistant by training, Joceline shares one of the most detailed interviews about her journey through diagnosis, treatment, and pursuit of HSCT, including sharing her strategies for fundraising and finding patience as she awaits the border to reopen.

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:
Bates Natural Vision Improvement Exercises
Radical Acceptance by Tara Brach
Ahna Crum
Roger McDougal
MS Tripping on Air
NHS Expert Patients

Be inspired by Chloe to increase awareness, and stay active and sane despite COVID (Ep. 61)

Warrior: Chloe Zallen
AI: Relapsing remitting multiple sclerosis
HSCT: Oct/Nov 2020
Superpowers: self-love

Are you able to recognize your limitations? Are you aware of your stressors? Where do you find courage to be confident in your decisions?

As a traveling cardiac specialist with experience at several hospitals, Chloe found herself in an extremely stressful environment with a lot of fear incited by the uncertainties of her MS. When she suddenly had numbness along the entire right side of her body, she began googling her symptoms and weighing the possibilities while awaiting the results of an MRI. Though she received a diagnosis soon thereafter, nearly every neurologist she consulted encouraged the same disease-modifying therapy and after researching the side effects, Chloe opted instead to adopt special diets and a natural path to managing her symptoms. 

Tune in and learn more about how Chloe found complete relief from her symptoms while away in New Zealand, find motivation to be your own advocate, and how she found her way to HSCT despite doctors’ and friends’ concerns that she would die. Hear more about her experience in Monterrey and how she was able to stay active and sane despite the global pandemic.

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, Inc.: https://HSCTWarriors.org

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

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/