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.

_________________________________

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

Explore the nuances of functionality with Charissa and her physical therapist, Dr. Gretchen Hawley (Ep. 81)

Warrior: Charissa Rigano
AI: Multiple Sclerosis
HSCT: December, 2020
Superpower: self-confidence

How committed to functionality are you? Are you aware of integrated, holistic approaches to health? How secure are you with confidence? 

In our first tandem interview, meet HSCT Warrior Charissa and physical therapist, Dr. Gretchen Hawley, who have been collaborating throughout Charissa’s experience with multiple sclerosis. Dr. Hawley committed to specializing in multiple sclerosis and, in consideration for the challenges that any particular day might introduce to someone battling autoimmune disease,  to making her services and support more accessible and available to her clients. Charissa met Dr. Hawley years prior and reconnected with her upon returning home from Clinica Ruiz for HSCT.

Join us to learn more from the professional perspective about the nuances of neuroplasticity, and specialization of physical therapy for autoimmune disease, as well as to hear comparisons from the patient perspective on the experiences with dedication to “move it or lose it” in order to support wellness for the next decades.

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:
www.msinglink.com
Instagram: Dr.Gretchen
Facebook: MS Wellness and Support with Dr. Gretchen PT
Youtube: DrGretchenHawley

Revisit our conversation with Tamara and be reminded, you are enough (S4 replay)

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

Have you ever been close to a 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?

The HSCT Warriors Podcast logo appears at the top of a woman pictured with her eyes closed, shouting into a megaphone that she is tightly gripping with both hands. A question asking "What if you help others to learn about HSCT?" is placed on her shoulder, above a paragraph to identify the interviewee as Tamara Netzel, who battled the autoimmune disease of multiple sclerosis by pursuing HSCT in December 2019 in Monterrey, Mexico, and revealed her superpower to be truth.

After a long road to diagnosis, the first disease modifying treatment that Tamara tried sent her liver into failure. The second DMT created side effects within the first two doses including bladder problems and damage to her ninth cranial nerve that caused extreme pain over the course of ten months as she fought for answers until she found cannabis 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 in this deeper dive into so many aspects of life with MS and the rollercoaster ride of avoiding stress, treading feelings of isolation and taking calculated risks to avoid desperation in order to find quality care or sense of belonging in 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

Revisit the journey of Chris and relate to challenges of CIDP diagnosis by exclusion (S2 replay)

Warrior: Chris Masters
Snowflake: CIDP (chronic inflammatory demyelinating polyneuropathy)
HSCT: August 14, 2018
Superpower: ability to walk again

Have you ever lingered on the brink of life? Or wondered why diagnosis by exclusion takes so long? How much energy would you have to spin your wheels?

Meet Chris, a physical therapist familiar with physical movement, injury, and the understanding that when numbness, tingling, and pain consumed his abilities to move, he needed to fast-track some answers. Despite the shuffle from doctor to doctor without diagnosis, once his body completely shut down while driving to work, Chris and his wife knew they had to find their own answers and fully adorn the role of advocacy.

Tune in to learn more about the back-and-forth Chris experienced along his path to HSCT, the concern for others struggling to find the right diagnosis, the importance of self-advocacy, and the spirit of hope in sharing awareness.

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.

Resources noted:
GBS/CIDP Foundation: https://www.gbs-cidp.org/

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

Learn more about HSCT amid the global COVID pandemic from Jan-Marie and the power of patience (Ep. 48)

Warrior: Jan-Marie
AI: RRMS
HSCT: 6/20
Superpower: Patience 

Do you take doctors’ opinions as gospel? How comfortable are you asking questions and conducting research? Who helps you through tough times?

Jan-Marie

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 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 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:
Calm app

HSCT Warriors Podcast · Learn more about HSCT amid the global COVID pandemic from Jan-Marie and the power of patience

 

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)

Revisit the power of patience and persistence with Craig (replay from S4)

Warrior: Craig Witkowski
AI: Multiple Sclerosis
HSCT: September 2019 in Puebla
Superpower: Patience 

Do you find it tough to maintain patience with yourself or doctors? How easily do you find a positive mental outlook? How tightly do you hold on to hope? 

Replay Craig

After being on a first-line drug to hold off initial onset of his MS symptoms, Craig found benefit for a few years until he stopped the medication due to unwelcome side effects.  After changing careers, he spent some time without any sign of the disease until Craig was suddenly blind-sided by an experience while driving that left him nearly paralyzed. Without much explanation other than progression of his MS, he started on another disease-modifying-treatment that didn’t touch the continued progression and caused additional unwelcome side-effects.

Craig researched more about stem cell treatments because his doctors could only offer vague uncertainties and although he found Dr. Burt’s clinical trial at Northwestern, after spending a year fighting insurance to pursue HSCT, Craig learned his disease had progressed enough to leave him ineligible for the study criteria. Not willing to give up hope, Craig traveled from Chicago to Texas for a presentation about Clinica Ruiz and was sold on the possibilities that HSCT at Clinica Ruiz offered.

Tune in  and learn more about Craig’s unique challenges, fundraising efforts, power of patience, tremendous support of family and friends, and will to find his way to HSCT at Clinica Ruiz in Puebla, Mexico.

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 the power of patience and persistence with Craig