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

Learn more from Jan-Marie along her recovery rollercoaster and find hope (Ep. 78)

Warrior: Jan-Marie
AI: Multiple Sclerosis
HSCT: June 16, 2020
Superpower: Hope

What do you think is happening? How do you advocate for yourself when seeking answers?

Nearly immediately after HSCT, Jan-Marie experienced significant improvements with her balance and walking and knew in her heart that HSCT worked to halt progression. So, when Jan-Marie began experiencing new challenges, pain, and neurological issues at just 5 months post-HSCT, she became very determined to find answers. Although her doctors insisted that the multiple sclerosis had returned, Jan-Marie had a feeling that what she was experiencing was in fact very different from multiple sclerosis. Tune in to learn more about the variety of options that Jan-Marie pursued, from a top-off of chemo to spending a month in the hospital for nearly every test imaginable, including two MRIs that showed no MS-related activity.

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:

Hydrafil Feasibility Study by RegelTec

Talk to a Warrior at HSCTWarriors.org

Revisit the power of affirmation on Kim’s journey to HSCT for scleroderma at Duke (S4 replay)

Warrior: Kim Rodning
AI: Scleroderma
HSCT: September 4, 2018 at Duke University Medical Center
Superpower: perseverance, patience, and perspective

Do you practice daily affirmations of positivity? Does your self talk promote healing or judgment? How does hearing the stories of other Warriors help you?

Having encountered the possibility of HSCT by chance, Kim explored more about the research and program for Scleroderma patients at Duke University. Thankfully, she found HSCT just before her lungs hardened to the point where she wouldn’t have qualified.

Tune in and learn more about her experience and symptoms of scleroderma, the aid she received to fight for insurance coverage, and the team of caring angels at Duke that helped motivate Kim to fight back.

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 immediately.

Resources:
Facebook @KimberlyRodning

Be inspired in revisiting Bethany’s journey and find confidence despite judgment (S2 replay)

Warrior: Bethany Pappalardo
Snowflake: Multiple Sclerosis
HSCT: 03/08/05
Superpower: heightened awareness

When you need a different course of action, how long will you bide your time? How confident are you among judgement, shock and awe? Will you be ready once you hit rock bottom?

Having so many family members plagued with autoimmune disease, Bethany had just run out of options to treat her MS when her mom happened to watch an interview with Dr. Burt. With a ‘must do’ attitude, Bethany confronted HSCT and the public eye with brave resolve. Proclaiming it to be “literally the best thing that ever happened in my life,” you’ll likely be inspired to shed any fears about HSCT when you hear more of Bethany’s journey.

Tune in to this replay from Season two and hear more about the reciprocity of community, how Bethany continues to promote HSCT and coach others on their own journeys, as well as insights on why HSCT isn’t an option offered by more doctors.

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:
Other HSCT veterans
Facebook groups

Revisit Eileen’s uncertainty rollercoasters, and their shift through self-care (S2 replay)

Warrior: Eileen Hushion
Snowflake: Multiple Sclerosis
HSCT: 01/05/17
Superpower: Knowing you have the rest of your life to look forward to

How much fear do you have when facing uncertainty? How do you adjust when riding a roller coaster? What does normal even feel like? 

Despite years of debilitating fatigue and cycling through nine different disease modifying therapies, Eileen had a suspicion that someday, stem cells would help alleviate her pain. After researching the possibility of stem cells on her own, she found immediate support from her neurologist to pursue HSCT at Northwestern in Chicago.

Tune in to hear more about her experience of living with MS for twenty years, changes experienced post-HSCT, and learn more about the recovery roller coaster that has been life changing for Eileen.

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 noted:
Yogaglo
Myofascial release

Join Leta in her practice to dwell on the positive in life (S2 replay)

Warrior: Leta Krieger
Snowflake: Secondary Progressive Multiple Sclerosis
HSCT: 07-08/18
Superpower: Support from husband and friends

How affiliated are you with your autoimmune disease? How connected are you with your community?

After living with MS for nearly 40 years, when Leta first heard of HSCT while watching the BBC on vacation, she researched it and considered the chance that HSCT could possibly halt her progression. Rather than take a chance on letting her disease run her life, she decided to pursue the quickest course to treatment possible. 

Tune in to learn more about the fabulous care, comfort, and personalized service, and absolve any concerns in hearing more details of the “well-oiled machine” that is HSCT at Clinica Ruiz. Be inspired to treat your diagnosis as an interloper and “dwell on the positive”.

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: 
LetaKrieger.blog
Clinica Ruiz, Puebla
MS Gym
Any List app

Revisit all the ways Marlo strengthened her preparedness for HSCT (S2 replay)

Warrior: Marlo Kalb
Snowflake: Multiple Sclerosis and Lyme Disease
HSCT: anticipated by June, 2019
Superpower: body-knowing

How does one come to terms with the brutality of multiple sclerosis? How many disease modifying drugs have caused you significant complications? Do you know what it feels like to live a life without a chronic disease?

After seeing too many doctors that wouldn’t listen, receiving a diagnosis at 13 years young, and spending eleven years trying nearly every disease modifying treatment available, Marlo developed inflammation everywhere in her body that led to countless additional potential diagnoses. Having very few memories of her childhood or of positive experiences with doctors, Marlo has persevered with an admirable, courageous, and brilliant sense of hope for the future.

Tune in to hear more about Marlo’s journey with multiple sclerosis and how she is preparing her mind and body to become the first MS patient treated with HSCT according to the BEAM protocol (currently under special executive review) at the Dana-Farber Cancer Institute in Boston, Massachusetts.

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 noted: 
Dana-Farber Cancer Institute in Boston, Massachusetts
Clinica Ruiz, Puebla
Aa Maximov Hospital, Moscow Russia

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/

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.

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