#selfadvocate

Meet Rebecca at four years post-transplant and learn from her gracious outlook (Ep. 90)

September 7, 2022 — Leave a comment

Warrior: Rebecca Katonica
AI: Multiple Sclerosis
HSCT: November 2018
Superpower: Grace

Do you try to explain away that which might be serious? When was the last time you took a leap of faith?

After an explosive headache behind her eyes, Rebecca found herself at the eye doctor who ordered an MRI that evidenced lesions and diagnosed her with multiple sclerosis. Insistent that she could still participate in a social event while wearing an eye patch, she began steroids that helped reset her double vision and vertigo. At this time, there was only one disease-modifying therapy to try, which gave her flu-like symptoms. Over her twenty-year experience with MS before HSCT, Rebecca tried all but one medication and ended up losing countless bodily functions until the point she was basically bedridden. 

Tune in to learn more about how Rebecca, despite having trouble sitting up in the car, successfully navigated the journey to Clinica Ruiz to undergo HSCT. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.

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.

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

May 11, 2022 — Leave a comment

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)

March 30, 2022 — Leave a comment

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.

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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:

Hydrafil Feasibility Study by RegelTec

Talk to a Warrior at HSCTWarriors.org

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

February 23, 2022 — Leave a comment

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.

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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:
Eye mask
Alinker
Nonprofit: Move, Live, Prosper
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Revisit the journey of Chris and relate to challenges of CIDP diagnosis by exclusion (S2 replay)

May 12, 2021 — Leave a comment

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)

April 21, 2021 — Leave a comment

*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.

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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.

Meet Erin and be inspired to find empathy and connection despite feelings of isolation (Ep. 65)

April 7, 2021 — Leave a comment

Warrior: Erin Schoenlein
AI: Multiple Sclerosis
HSCT: March 15, 2020
Superpower: energy to help other people

How wide is your view? Do you know what it feels like to be well? For how long have you been distanced? 

Having been diagnosed with an autoimmune disease in high school, Erin is no stranger to advocacy for well-being and the importance of spinning challenges into positive opportunities. Although she did not qualify for the clinical trials in the United States, Erin researched her options and found herself at Clinica Ruiz just prior to the start of the global pandemic. Erin distracted herself from the chaotic stress of COVID by surrounding herself in a bubble of staying focused on positivity and gratitude expressed by others around her. During this conversation with Erin, hear more about how her experiences in Mexico and her quarantine upon returning home helped motivate her to find inclusive ways to empower others.

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.

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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:
Sail MS
Paavitforward.org
HSCTWarriors.org

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

September 30, 2020 — Leave a comment

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 Felicia and learn how she fought against the odds and COVID to pursue HSCT (Ep. 54)

September 23, 2020 — 1 Comment

Warrior: Felicia Merritt
AI: Progressive Multiple Sclerosis
HSCT: August 2020
Superpower: Feeling invincible

Have you ever suddenly realized just how much you were taking for granted? Have you been able to find internal strength? What about internal peace?

Shortly after turning 30, Felicia began experiencing vision issues and weakness. Following an intense crossfit workout, Felicia hoped she could laugh things off until she checked herself into the hospital. Her doctors referred her to Ohio State University and once surrounded by a medical team for a few days, Felicia was diagnosed with multiple sclerosis in 2018. 

Tune in to learn more about HSCT despite COVID and details about the level of detail, treatment and care Felicia received at Clinica Ruiz, and all that she has gained in just the first couple of weeks post-HSCT. 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:
Facebook blog page

Catch-up with Marlo, an HSCT hopeful who persevered despite a super twisted path to HSCT

September 16, 2020 — Leave a comment

Warrior: Marlo Kalb
AI: Relapsing Remitting Multiple Sclerosis
HSCT: 9.30.19
Superpower: confidence to fight back

When you encounter setbacks, how do you find your way forward? What are the skills required to persist and persevere? How will you face the many curves that lie ahead?

Diagnosed at just 13 years old, Marlo found herself eager for HSCT after doing research and listening to this podcast. First interviewed as a HSCT Hopeful during Season 2, Marlo shared her journey in anticipation to become the first person transplanted at the Dana Farber Cancer Institute in Boston. After facing administrative issues, delays, and opinions not favoring her candidacy for HSCT, tune in to learn more about how Marlo faced the multiple twists and turns that eventually led her to Clinica Ruiz.

Join us in celebrating Marlo’s one-year stem-cell birthday and how HSCT has impacted her after spending 13 years living with MS.

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:
Clinica Ruiz
HSCT Warriors, Inc.