Meet Cassidy along her journey of over-achieving before and after HSCT* (Ep. 67)

*This episode contains content that may be alarming to some listeners, including mentions of suicidal ideation. Please check the show notes for more detailed descriptions and take care of yourself*

Warrior: Cassidy V. Chapman
AI: Multiple Sclerosis
HSCT: July 15, 2019
Superpower: Passion for bringing awareness to HSCT

To what extent are you an over-achiever? How open are you to receiving support from others? Where do you find family?

After being diagnosed with MS her first year of law school, Cassidy was initially able to manage her disease with a variety of disease-modifying therapies. Though building a successful career as an attorney came with compounding stress that caused significant relapses which left Cassidy fighting optic neuritis and blindness, it was the fatigue and cognitive impairments that ultimately led her doctor to recommend she stop working. After waiting 33 months to be approved for social security disability, Cassidy found creative ways to stay afloat while managing her relapses and steroid psychosis. Thanks to the guidance of an eleven-year HSCT veteran, once Cassidy decided it was time to pursue HSCT, she surrounded herself with caregivers.

With frank conversation about Cassidy’s experience seeking disability about the side effects of multiple sclerosis and its’ medical treatments, including steroid psychosis that led to homicidal and suicidal ideation (skip 40:00-42:30 and 1:02:00-1:05:05 if you want to avoid these parts of the conversation), this episode offers helpful insights about MS symptoms to look out for both pre- and post-HSCT. Tune in to learn more about Cassidy’s scare at 14 months post-HSCT and how her experience with HSCT has shifted her perspective and her priorities.

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.

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

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

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 our first chat with Ron and find motivation to research care you deserve (replay from S1)

Warrior: Ron Gabrielli
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.

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.

_________________________________

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: 
Ron’s blog: ronniesmstrek.mozello.com
Heavy Metal testing: https://www.doctorsdata.com/urine-toxic-metals/
Cannabidiol oil: https://cbdistillery.com
1:1 CBD:THC oils

Managing setbacks post-HSCT; a chat with Brooke Slick (Ep. 55)

Warrior: Brooke Slick
AI: Multiple Sclerosis
HSCT: May, 2013
Superpower: Surrender

Are you able to surrender to all that seems out of your control? How easy is it for you to allow things to just happen?

Revisit Brooke’s journey to HSCT and learn more about the setbacks she has faced post-HSCT, (including surgeries for trigeminal neuralgia) but also the influence of mindset, and the inspirations she has found with persevering in her battle with MS beyond HSCT. 

Tune in to check-in with our dear friend, Brooke and hear more about how she continues to support others along their journey to HSCT and celebrate the gifts of community and service to 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:
BrookeSlick.com
The MS Gym Podcast
The MS Gym
HSCT Moscow
HSCT Warriors, Inc.

Meet Michelle and be inspired to pursue the decisions you feel are right

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?

Zen Jen and Michelle with some high school friends one Halloween

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.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 Warriors, Inc.
Northwestern Memorial Hospital

https://w.soundcloud.com/player/?url=https%3A//api.soundcloud.com/tracks/885922243%3Fsecret_token%3Ds-ZX3MaSPalQv&color=%23ff5500&auto_play=false&hide_related=false&show_comments=true&show_user=true&show_reposts=false&show_teaser=true&visual=true HSCT Warriors Podcast · Meet Michelle and be inspired to pursue the decisions you feel are right

Revisit our chat with Jess about her myeloablative experience in Sydney

Warrior: Jess Green
AI: Multiple Sclerosis
HSCT: February 2019 at St. Vincent’s Hospital, Sydney
Superpower: Love and compassion from others

When your doctors run out of options, are you ready to suggest a course of action? Despite the scary struggle or the bad times, can you find the goodness? How strong is your support system?

Replay Jess

With a relatively quick diagnosis of Multiple Sclerosis after her first sign of an issue, Jess researched treatment options and found her doctors at a loss for how to combat her relapses after she failed three different disease modifying drugs in just two years. She encouraged her doctors to send her records to the team running the HSCT Clinical Trial at St. Vincent’s Hospital in Sydney and suddenly found herself accepted to proceed with HSCT.

Tune in and learn more about the importance of connections, compassionate caregivers, and the struggle that Jess experienced when she experienced an allergic reaction during the BEAM protocol with Dr. John Moore and Dr. Barbara Withers at Kinghorn Cancer Centre in Sydney Australia.

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 immediately.

HSCT Warriors Podcast · Revisit our chat with Jess about her myeloablative experience in Sydney

Revisit Lydia’s journey to HSCT for Crohn’s Disease and find joy in surviving (replay from S4)

Warrior: Lydia Rosenbaum
AI: Crohn’s Disease

HSCT: August 2002 at Northwestern Memorial, Chicago
Superpower: Empathy and self-efficacy

How often do you push your limits? After spending time planning to die, how do you shift to celebrate success with surviving? How do you find compassion for people who have never walked in your shoes?

Replay Lydia

Despite suffering extreme complications with Crohn’s disease that kept her in and out of the hospital through multiple surgeries and dangerous fevers, Lydia woke up after surgery one day and was suddenly told “you cannot eat”. Before she turned 30, on medical disability, living in the hospital more than out and realizing she was on palliative care, Lydia found herself advocating for consistency and questioning the ethics of doctors and insurers.

Having prepared to face death from her aggressive form of Crohn’s, Lydia was surprised to find herself feeling so isolated after HSCT when she realized she could prepare to live. Join us and learn more from Lydia about her battle and the path that led her through the Phase II Clinical Trial as one of the very first patients treated with HSCT for Crohn’s Disease by Dr. Burt at Northwestern.

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 immediately.

HSCT Warriors Podcast · Revisit Lydia’s journey to HSCT for Crohn’s Disease and find joy in surviving (replay from S4)

Replay our inspiring conversation with Tamara and remember that you are enough (replay from S4)

Warrior: Tamara Netzel
AI: Multiple Sclerosis
HSCT: Dec. 2019, Monterrey Mexico
Superpower: Truth

Have you ever been close to gaining resolution, only for it to slip through the cracks? How long has it taken for you to feel supported by your doctors? What would it look like if you pledged to help just one person get to HSCT?

Replay Tamara

After a long road to securing the diagnosis of multiple sclerosis, the first disease modifying treatment that Tamara tried eventually sent her liver into failure. the first two doses of her second shot at a DMT created bladder problems and damage to her ninth cranial nerve that caused extreme pain. Over the course of ten months as she fought for answers, Tamara was introduced to cannabis and found it to be her only relief. Finally after a third DMT proved ineffective, Tamara found research on HSCT and by connecting with other HSCT Veterans about their experience with Clinica Ruiz, and was ultimately convinced to travel abroad where she found better care than she had ever before received.

Join us to kick off national Multiple Sclerosis awareness month with this deeper dive into so many aspects of life with MS and the rollercoaster ride of avoiding stress, treading feelings of isolation, fighting to advocate for yourself, and taking calculated risks to avoid desperation in order to find quality care or sense of community.

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 immediately.

Resources: 

McDonald Criteria
Wahl’s Diet
CruelConsequences.org
Dateline NBC
HSCT Warriors, Inc. 
IG blondewndrwmn

HSCT Warriors Podcast · Replay our inspiring conversation with Tamara and remember that you are enough (replay from S4)