Continue learning from Carolyn’s insider perspective with HSCT at Cleveland Clinic (Ep. 82 part 2)

Warrior: Carolyn Deming
AI: Multiple Sclerosis
HSCT: scheduled May 11
Superpower: blatant honesty

Do you ponder problems or possibilities? What is your approach to finding the right mindset? How do you advocate for what you know you need?

Picking up where we left off last week, tune in to hear details about Cleveland Clinic’s transplant care team, facilities and gain ideas for strategies to advocate for the support you need from doctors, especially throughout the HSCT experience.

Tune in to learn more about how “the power of options” has been incredibly supportive for Carolyn, some of the latest MRI technologies at Cleveland Clinic, their reverence for stem cells, and Carolyn’s insider’s perspective. 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.

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:

Carolyn’s blog: Mychroniclibrary.com
Cuddle clone
Matt Haig books

Be inspired by Carolyn’s insider perspectives as she pursues HSCT at the Cleveland Clinic (Ep. 82 part 1)

Warrior: Carolyn Deming
AI: Multiple Sclerosis
HSCT: scheduled May 4
Superpower: blatant honesty

Do you ponder problems or possibilities? What is your approach to finding the right mindset? How do you advocate for what you know you need?

After experiencing significant eye pain but no other symptoms, Carolyn was “utterly stunned” to be diagnosed with multiple sclerosis on her 32nd birthday. Her first significant relapse occurred just five months after. Having started a disease-modifying therapy that gave her flu-like symptoms, it wasn’t long before she carved her own path forward through several DMTs and emotions tied to the entire experience of chronic illness that led her to pursue HSCT.

Tune in to learn more about how “the power of options” has been incredibly supportive for Carolyn, some of the latest MRI technologies at Cleveland Clinic, their reverence for stem cells, and Carolyn’s insider’s perspective. 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.

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:

Carolyn’s blog: Mychroniclibrary.com
Cuddle clone
Matt Haig books

Check-in with Joceline and celebrate her journey to HSCT in Moscow last year (Ep. 80 part 1)

Warrior: Joceline
AI: Multiple Sclerosis
HSCT: March 29, 2021
Superpower: tenacity

How often do you reflect on all that is happening? Do you ever consider yourself from the inside-out? How do you find patience? 

When we first met Joceline in Season 6, she shared concerns over the COVID variant in the UK that had delayed her acquiring a schedule to begin HSCT at the AA Maximov hospital in Moscow. Nearly one year since we last spoke, Joceline celebrated her one-year stem cell birthday and joined us to share details about how she finally made it to Moscow, through pre-testing, and underwent the transplant while connecting with other patients to pass the time before isolation. Tune in to hear how she embraced the chemo, despite unexpected side effects from the chemo, including dizziness and immediate onset of menopause. Learn more about how isolation did not go as planned for Joceline, and how she established gentle boundaries to support herself through the unexpected depression that ensued during isolation.

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.

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.

Meet Eric to learn from his quick pursuit of HSCT after diagnosis despite the pandemic (Ep. 79)

Warrior: Eric Saperstein
AI: Multiple Sclerosis
HSCT: July 5, 2020
Superpower: Speed (to HSCT)

Are you someone to live in the present, or anticipate the future? How do you know what’s going to help you? Where do you find hope?

After experiencing trigeminal neuralgia and receiving an MRI that diagnosed him with MS, Eric consulted with two different neurologists. Rather than discussing the efficacy of his options, one doctor encouraged him to decide which medicine to try based on a bag of marketing materials, and another doctor suggested he choose based on whether he wanted to take a pill or give himself injections. Despite knowing several people diagnosed with multiple sclerosis and consulting with a family friend who is a neurologist, Eric only learned about HSCT by conducting his own research. 

Tune in to learn more about when and where Eric chose to pursue HSCT, the resources available to him during treatment, including a cure for the 9 hour bout of hiccups that he experienced as a side-effect of the chemo, and how he’s faring post-HSCT as he commits to supporting his gut health by eliminating mycotoxins. Please forgive the ‘ghost in the machine’ interference throughout this episode…  

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.

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 and Cellular Therapies for Autoimmune Diseases (Burt, Farge, Ruiz, Saccardi & Snowden, 2022).

Celebrate the start of spring and check-in with Ali at 4+ years post-HSCT (Ep. 77)

Warrior: Ali Roberts
AI: Multiple Sclerosis
HSCT: November 6, 2017
Superpower: Gratitude

How happy are you with what is happening today? Where are you along the journey with acceptance? How do you live your best life?

The beginning of a new season offers the opportunity to check in with Ali at the four-year mark of HSCT recovery. Tune in to learn more about how Ali has navigated psychological and emotional wellbeing and learn how she found a way to accept all the changes that come along with the long process of healing damages incurred by multiple sclerosis including the invisible aspects of orthorexia, finding alternative exercises to promote bone and muscle strength, and exploring supplements that can support our well-being. 

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.

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:

The MS Gym

Reconnect with Michelle and be inspired to pursue decisions you feel are right (S5 replay)

Warrior: Michelle Webb
AI: Relapsing-Remitting Multiple Sclerosis
HSCT: 5/19
Superpower: Compassion and understanding

Are you someone to believe that everything happens for a reason? How often does your experience with disease cancel plans with friends and family? How often are you kind to your body and mind?

After realizing the eighth disease modifying therapy she tried (since 2011) wasn’t helping her feel any better, Michelle began looking into options. As a person who doesn’t trust blindly, hear more about how Michelle – also, a high school friend of Jen’s – gained information when she found herself seeking guidance about next steps, and found the courage to move forward despite her doctor’s opinion.

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.

_________________________________

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 Warriors, Inc.
Northwestern Memorial Hospital

Revisit our first conversation with hopeful DeWayne as he pursued the BEAT-MS trial (S5 replay)

Warrior: DeWayne Durr
AI: Relapsing-Remitting Multiple Sclerosis
HSCT: scheduled for September, 2020
Superpower: prayer and understanding

How comfortable are you with difficult or impossible situations? How direct are you about the care you receive from your doctors? When faced with the chance of being randomly assigned to receive HSCT, would you feel conflicted?

After DeWayne researched the disease modifying therapies available to him, he chose to clean up his diet and forgo drugs, as he had also researched HSCT and barely missed the chance to be treated by Dr. Burt in Chicago before he closed the clinical trial. Tune in to hear more about how DeWayne advocated for consideration for the BEAT-MS trial at the Cleveland Clinic and the winding path to get there despite other doctors’ opinions, the details of participating in the clinical trial, and COVID. Learn how DeWayne managed to secure insurance coverage and approval to be the first patient to be treated at Cleveland Clinic off-trial for multiple sclerosis.

Tune in and learn more about how DeWayne managed to secure insurance coverage and approval to be the first patient to be treated at Cleveland Clinic off-trial for multiple sclerosis.

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.

_________________________________

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.

Check-in with Ron along his recovery rollercoaster and be inspired by his positivity and perseverance (S5 replay)

Warrior: Ron Gabrielli
AI: Multiple Sclerosis
HSCT: 5/6/17
Superpower: Hope

How inspired are you to help others? How important are caregivers in your journey with disease?

After enjoying such an incredible experience at Clinica Ruiz, Ron and his wife have spent countless hours connecting with individuals to answer questions and share support to help people make informed decisions about HSCT. While all Ron cares about is paying forward the support he received in his experience, he joins so many others post-HSCT who question the systems that keep HSCT out of reach for so many. 

Tune in and learn more about the various strategies that Ron has tried out during his three-plus years of recovery, how he managed to check his pride, and all the hope he holds on to as he continues reconciling with the realities of recovery. 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.

_________________________________

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: 
Tao Patch
Ex N Flex

Reconnect with Chelsey and be inspired to move, live and prosper (S5 replay)

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

How often do you find time to reflect on what works for your body? Have you been 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.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 of HSCT locations. 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
Alinker
Nonprofit: Move, Live, Prosper
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Revisit our chat with Jan-Marie, one of the first to receive HSCT amidst the pandemic (S5 replay)

Warrior: Jan-Marie Morgan
AI: Multiple Sclerosis
HSCT: June, 2020
Superpower: Patience

How often do you take doctors’ first opinions without questioning? How often do you take time for self-care?

Not only does Jan-Marie set a shining example to approach life with optimism and positivity, she offers insight into what it’s like to research scientific evidence to inform opinion, foster support both emotionally and financially, and gain confidence to pursue HSCT during the COVID pandemic. As a nurse practitioner by trade, Jan-Marie used her training in evidence-based medicine to be informed about her options with disease modifying therapies that ultimately did not work. After finding herself frustrated and hopeless with the progression of her multiple sclerosis, Jan-Marie was introduced to HSCT by a girlfriend and within hours completed the application, and in days secured a schedule.

Tune in to hear more about Jan-Marie’s journey to HSCT, changes to the typical experience in Monterrey at Clinica Ruiz for COVID, and how Jan-Marie is faring the first few weeks 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 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:
Calm app