Revisit this check-in with Katie and be inspired to find hope and understanding

May 6, 2020 — Leave a comment

Warrior: Katie Hominsky
AI: MS
HSCT: 4/15/19, Chicago
Superpower: Confidence

Who has your back when things get tough? When facing struggles in life, where do you seek support? How do you find hope and understanding?

Tune in for this post-HSCT update from Katie, our first hopeful interviewed about her Hope Journey to HSCT and hear more about the ups and downs of her recovery rollercoaster at nearly six months post-transplant. In addition to simply catching up, Katie offers important updates on her fundraising initiatives and support strategies, and shares more about her ongoing Hope Journey.

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. 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 reach out if you’re interested in sharing your story. We would definitely love to learn how the podcast has helped your journey with autoimmune disease… if you could take a moment to share your story, 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 immediately.

HSCT Warriors Podcast · Revisit this check-in with Katie and be inspired to find hope and understanding

Revisit some great reasons to smile along Tracey’s journey with HSCT (replay from S3)

April 29, 2020 — Leave a comment

Warrior: Tracey Rossi
AI: Multiple Sclerosis
HSCT: August 2018
Superpower: Motivation

Are you looking to fit all the HSCT pieces together? What is your outlook on life? How often do you choose to turn a frown upside down?

Replay Tracey

As a former surfer, Tracey became an expert in finding balance and going with the flow. Having lived with the MS monster since 2009, Tracey was shocked when Dr. Burt was surprised enough by her symptoms to expedite her enrollment in the MOST clinical trial. Tune in and hear the latest updates from Chicago when Tracey was seen for her one-year follow-up in August.

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HSCT Warriors Podcast · Revisit some great reasons to smile along Tracey’s journey with HSCT (replay from S3)

Enjoy Paul’s mindful positivity and joy along his marathon to HSCT (replay from S3)

April 22, 2020 — Leave a comment

Warrior: Paul Wheeler
AI: Secondary Progressive Multiple Sclerosis
HSCT: April 10, 2017
Superpower: Dancing

Have you experienced the compassion of humanity? Is your approach to life more of the “cup half-empty” or “half-full” mindset? Just how bright is your outlook?

As someone who prefers “research to the nth degree” about medical decisions, Paul weighed the odds of HSCT and determined them better than the 100% chance his disease would progress. Thanks to HSCT, Paul has not only found clarity of mind without the burden of “cog fog” he recognizes that other unexpected improvements he has been so grateful for are not guaranteed.

Tune in to learn more about how Paul rallied the support of his family and community to help raise money in order to get from the UK to Mexico, including a “really weird” journey made of “a marathon a day” spanning 250 miles in his wheelchair. Enjoy this inspiring story of energetic joy.

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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Revisit reflections on contributions with Jarrod (replay from S3)

April 15, 2020 — Leave a comment

How much effort/time/money has been spent battling autoimmune disease? What is your contribution to the outcomes that you are seeking? How committed are you to making time to build habits that nourish your mind, body and soul?

In this replay from season three, learn more about this 17 year experience with MS to an auto accident that injured his neck, Jarrod continues to find improvements post-HSCT through reducing a majority of his stress, finding the importance of sleeping and rest, and committing to movement and exercise.

Tracing his 17 year experience with MS to an auto accident that injured his neck, Jarrod continues to find improvements post-HSCT through reducing a majority of his stress, finding the importance of sleeping and rest, and committing to movement and exercise.

Jarrod’s message that “You get out of HSCT… what you put into HSCT” inspires shifts in thinking and movement of both the mind and body. Recognizing the challenges that he might still face through ongoing recovery, by embracing a positive mindset and gratitude Jarrod is able to find patience and space to focus on getting better and living his second chance at life.

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Resources:
MS Gym
Jarrod’s HSCT Journey FB group

Join us in meditation of loving kindness to honor healthcare workers and find a sense of calm

April 8, 2020 — Leave a comment

Warrior: everyone
Superpower: Loving kindness meditation

Have you wanted to express gratitude for all the healthcare professionals who are on the front lines, responding with care for individuals battling life threatening illness? Do you know how to find calm within a state of stress and anxiety?

In this special episode, join our host zen Jen and her lifelong friend Jessica in a guided meditation practice to extend gratitude and loving kindness to healthcare professionals and others on the front lines of the covid-19 pandemic.

Founder of the Radically Rooted Yoga and Lifestyle Center, Jessica Lichaa started exploring the integration of body practices through yoga in 1999 and over time has developed an emphasis on cultivating autonomic regulation through the fascia of the body. The practices led by Jessica have helped many individuals to improve the stress and trauma induced holding patterns within the tissues of the body to cultivate healthier ways of dealing with the emotional responses of life and improve overall well being.

In September of 2016 Jessica Lichaa developed a unique yoga teacher curriculum focused on neuroscience, early childhood psychology, body awareness, mindfulness, and self-compassion practices. She integrated timeless ancient techniques with current research in neuroscience and developed a highly acclaimed yoga teacher training, that not only emphasizes asanas, philosophy and pranayama, but also manual tissue movement to assist the body in accessing the relaxation response, to foster deeper states of homeostasis, and awaken one’s immune system to detox the cellular matrix of free radicals.

The guided meditation featured in this episode can be practiced by anyone at any time to find a sense of calm and connection to self and others, and cultivate gratitude for all the healthcare professionals who are caring for so many who are battling covid-19. May we feel safe and protected… may we be happy… may we be healthy… may we be free from pain and suffering.

Feel free to reach out for more information or to learn more about the practices or music highlighted in this episode. 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.

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Resources:
JessicaLichaa@liveradicallyrooted.com

Join John in finding possibility, similarities, and appreciation with multiple sclerosis (Ep. 45)

April 1, 2020 — Leave a comment

Warrior: John Taylor
AI: Multiple Sclerosis
HSCT: September 2019 at Northwestern
Superpower: Appreciation

Have you ever tried to describe the sensation of severe pain, despite knowing that you’re also physically numb? When side effects and risk outweigh the good, how do you make a choice? How do you feel when selected for the chance of a lifetime, knowing others have to miss that chance?

After years of living with symptoms considered insignificant, John finally received a diagnosis of multiple sclerosis in 2010 from his third opinion doctor. While the first disease modifying therapy seemed to work for nearly a decade, just as John began to fear a future with little hope about his new normal, his wife stumbled upon HSCT in time for him to be treated in Dr. Burt’s last cohort before sabbatical.

Tune in and learn more about John’s experience with loss of balance, shooting pains, burning sensations, optic neuritis, and other symptoms that he experienced with multiple sclerosis.

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Resources:
Patient care manuals for post-HSCT
Research articles

Meet Kim and the sunny disposition that keeps her fighting back against scleroderma (Ep. 44)

March 25, 2020 — Leave a comment

Warrior: Kim Rodning
AI: Scleroderma
HSCT: September 4, 2018 at Duke University Medical Center
Superpowers: 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.

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Resources:
Facebook @KimberlyRodning

Learn about the compassionate care that carried Jess through myeloablative HSCT in Sydney

March 18, 2020 — Leave a comment

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?

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.

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Join Tamara in her journey to HSCT and be reminded that you are enough (Ep. 41)

March 4, 2020 — Leave a comment

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?

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.

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Resources:

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

Learn from Meghan how not to poke the bear of scleroderma and more about HSCT at Duke (Ep. 39)

February 19, 2020 — Leave a comment

Warrior: Meghan Newell Davis
AI: Scleroderma
HSCT: 1/22/19 at Duke University
Superpower: Unbreakable

Have you ever watched a doctor google your symptoms to find help? How often do you take the little things in life for granted? As you move through life, do you take caution not to ‘poke the bear’?

Celebrating a son just one year younger than her new immune system, Meghan offers our listeners a glimpse into life with a very aggressive form of scleroderma and her experience with HSCT at Duke University. The highly competitive-Ironman-Nutritionist suddenly found her body to be suddenly sore, stiffening and stonelike. As she continued struggling to hide invisible symptoms that were physically shutting down her body, she spent weeks visiting doctors, researching her symptoms, and experimenting with various alternative remedies to find some relief.

Tune in and hear more about the freight train that wrecked Meghan’s capacity to function in everyday life despite not looking sick. Once she was connected with a rheumatologist, Meghan finally had diagnoses of multiple autoimmune diseases and was fast-tracked to HSCT at Duke University. Through HSCT Meghan gained lifelong warrior friends and family, including her doctors, nurses and care team and shares so many valuable insights!

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Resources:
Meghan’s race to HSCT
Meghan_fit4life on Instagram
Dr. Twining, Myrtle Beach
Dr. Baker Frost, Medical University of South Carolina

HSCT Warriors Podcast

Illuminating invisibilities of autoimmune disease

#selfcare

Revisit this check-in with Katie and be inspired to find hope and understanding

Revisit some great reasons to smile along Tracey’s journey with HSCT (replay from S3)

Enjoy Paul’s mindful positivity and joy along his marathon to HSCT (replay from S3)

Revisit reflections on contributions with Jarrod (replay from S3)

Join us in meditation of loving kindness to honor healthcare workers and find a sense of calm

Join John in finding possibility, similarities, and appreciation with multiple sclerosis (Ep. 45)

Meet Kim and the sunny disposition that keeps her fighting back against scleroderma (Ep. 44)

Learn about the compassionate care that carried Jess through myeloablative HSCT in Sydney

Join Tamara in her journey to HSCT and be reminded that you are enough (Ep. 41)

Learn from Meghan how not to poke the bear of scleroderma and more about HSCT at Duke (Ep. 39)

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