Revisit Rachel’s journey with CIDP before myeloablative HSCT at the CBCI in Denver (S6 replay)

November 16, 2022 — Leave a comment

Warrior: Rachel Gallery
AI: Chronic Demyelinating Polyneuropathy Disease
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 and significant complications (namely graft v. host disease) amid the COVID pandemic. With so many helpful tips for mindset to accept support, 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.org 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

Reconnect with Erin to find empathy and connection despite feelings of isolation (S6 replay)

November 9, 2022 — Leave a comment

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.

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Resources:

Sail MS
Paavitforward.org
HSCTWarriors.org

Continue learning from DeWayne’s experience with myeloablative HSCT (S6 replay part 2)

November 2, 2022 — Leave a comment

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?

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.

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Resources:
www.rooftopprayerwarrior.com
www.hsctwarriors.org

Revisit DeWayne’s experience as the first patient for MS at the Cleveland Clinic (S6 replay part 1)

October 26, 2022 — Leave a comment

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?

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 study, 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 airs 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.

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Resources:
www.rooftopprayerwarrior.com
www.beat-ms.org

Revisit the continuation of Joceline’s journey and a COVID work-around (S6 replay part 2)

October 19, 2022 — Leave a comment

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.

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

Revisit Joceline’s honest reflections and find compassion for others (S6 replay part 1)

October 12, 2022 — Leave a comment

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 Qi 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.

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Resources:

Bates Natural Vision Improvement Exercises
Radical Acceptance by Tara Brach
Ahna Crum

Catch-up with Amy and celebrate her learning journey at nearly one-year post HSCT (Ep. 94)

October 5, 2022 — Leave a comment

Warrior: Amy Capel
AI: Multiple Sclerosis
HSCT: October 2021
Superpower: mentality

To what extent are you distracted? Have you ever been on the outside looking in?

We first met Amy in Season 7 when she described her struggle to understand the disease and the storm of negative side effects from the first medication she tried. Thanks to a friend who had success with HSCT, Amy was convinced and committed to making the best decisions for herself and her family which meant advocating for herself to pursue HSCT. We last spoke with Amy the day before she met with a new neurologist at Duke University, just days before she was scheduled to travel to Clinica Ruiz in Puebla.

Tune in to hear more details about Amy’s experience with the clinic, the culture, the physical and the mental components of her journey to HSCT. Be sure to visit our website, HSCTWarriorsPodcast.org 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 podcasts.

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Check-in with DeWayne after two-years from being the first patient on the BEAT-MS trial (Ep. 93)

September 28, 2022 — Leave a comment

Warrior: DeWayne Durr
AI: Multiple Sclerosis
HSCT: October 20, 2020
Superpowers: gratitude

Do you enjoy finding the why? How often do you extend gratitude?

As the first person to receive HSCT as a part of the BEAT-MS trial at the Cleveland Clinic, DeWayne has graciously offered great insights throughout his journey, including this update at nearly two-years post-transplant. From the strategies he has pursued to promote healing, to observations about interactions with others, this episode offers an abundance of resources that have helped along DeWayne’s journey.

Tune in and be inspired by DeWayne’s superpower of gratitude and his openness in sharing his story as the first person treated at the Cleveland Clinic on the BEAT-MS trial at the Cleveland Clinic. Be sure to visit our website, HSCTWarriorsPodcast.org 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 podcasts.

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Resources:
www.rooftopprayerwarrior.com
LED light therapy and Cryotherapy at the Chill Zone
www.hsctwarriors.org

Reconnect with Allison to celebrate superpowers at eight-years post-HSCT (Ep. 92)

September 21, 2022 — Leave a comment

Warrior: Allison Carr

AI: Multiple Sclerosis
HSCT: December, 2014
Superpowers: hope and grit

Are you motivated to give back to others? To what extent do you recognize superpowers in others? How challenging is it for you to be optimistic?

As someone who spent nearly twenty years battling the unknown, Allison was surprised to be approached by a stranger curious about her drop foot, and even more surprised when she was finally diagnosed with multiple sclerosis. After battling with insurance to pursue HSCT outside a clinical trial in hopes to avoid the transition to secondary-progressive, and dedicating time to healing her physical body post-transplant, Allison continues to find gratitude and spread hope to others along her journey.

Reconnect with Allison (who we first met in Season 3) to learn from her personal, physical and spiritual reflections, and how she is faring at nearly eight-years post-transplant. Be sure to visit our website, HSCTWarriorsPodcast.org 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 podcasts.

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Resources:

Medical Medium: Cleanse to Heal by Anthony William

Meet Alisha, hopeful for HSCT someday, even if it isn’t an option where she lives (Ep. 91)

September 14, 2022 — Leave a comment

Warrior: Alisha Daly
AI: Multiple Sclerosis
HSCT: hopeful
Superpower: Resilience and compassion

How fair is the playing field in your experience with autoimmune disease? How far have you been strung along before receiving a diagnosis?

Despite a severe bout of optic neuritis, it took more than four visits to the emergency room and multiple specialists weighing in before an MRI was ordered to help assess why Alisha was experiencing severe headaches and loss of vision. Although the first interpretation of the MRI was deemed to be a clinically isolated incident and she received steroids which helped alleviate the optic neuritis, within just a few days, Alisha was hit with another attack of pain, floating spots and loss of vision. Tune in and be inspired by Alisha’s story of tenacity as she navigates her diagnosis and finding her way to HSCT… someday.

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Resources:

Fundraiser: https://gofund.me/2f1385d6
Instagram: Dirtygyul_

HSCT Warriors Podcast

Illuminating invisibilities of autoimmune disease

media

Revisit Rachel’s journey with CIDP before myeloablative HSCT at the CBCI in Denver (S6 replay)

Reconnect with Erin to find empathy and connection despite feelings of isolation (S6 replay)

Continue learning from DeWayne’s experience with myeloablative HSCT (S6 replay part 2)

Revisit DeWayne’s experience as the first patient for MS at the Cleveland Clinic (S6 replay part 1)

Revisit the continuation of Joceline’s journey and a COVID work-around (S6 replay part 2)

Revisit Joceline’s honest reflections and find compassion for others (S6 replay part 1)

Catch-up with Amy and celebrate her learning journey at nearly one-year post HSCT (Ep. 94)

Check-in with DeWayne after two-years from being the first patient on the BEAT-MS trial (Ep. 93)

Reconnect with Allison to celebrate superpowers at eight-years post-HSCT (Ep. 92)

Meet Alisha, hopeful for HSCT someday, even if it isn’t an option where she lives (Ep. 91)

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