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

July 8, 2020 — Leave a comment

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?

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.

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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 the power of patience and persistence with Craig

Check-in with Denise and celebrate persistence through the recovery rollercoaster (replay from S3)

June 3, 2020 — Leave a comment

Warrior: Denise Bishop
AI: Stiff Person Syndrome
HSCT: 9/12/17, Chicago
Superpower: increased empathy

How often do you listen to the voice in your head? How much can you afford to endure? What are your strategies to sort through all that needs attention?

Join us to check in with Denise following her two-year check up post-HSCT in Chicago. Learn more about the unexpected twists and turns along her ongoing rollercoaster, and how Denise faced the fluctuations including another autoimmune diagnosis, a traumatic fall, and tragic loss of her grandson.

Despite all the setbacks she has faced, Denise holds firm to a positive attitude and resilient mindset that is inspiring for any warrior. Tune in, find connection, and share in the 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. 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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HSCT Warriors Podcast · Check-in with Denise and celebrate persistence through the recovery rollercoaster (replay from S3)

Learn more from Chris about the challenges of CIDP and diagnosis by exclusion (replay from S2)

May 27, 2020 — Leave a comment

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 of diagnosis with CIDP that led him 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/

HSCT Warriors Podcast · Learn more from Chris about the challenges of CIDP and diagnosis by exclusion (replay from S2)

Revisit inspiration from Tamra and find resiliency among the uncertainty (replay from S3)

May 13, 2020 — Leave a comment

Warrior: Tamra Minch
AI: MS Caregiver
HSCT: April 7, 2019
Superpower: Humility

Are you able to make time for yourself when caring for others? When faced with the uncertainties in life, what do you focus on? How does resiliency inform your outlook?

Replay Tamra (1)

When her husband was first diagnosed with multiple sclerosis, the whirlwind experience suddenly had Tamra searching for answers and alternatives to the pharmaceuticals that only guaranteed harsh side effects with terrifying probabilities. After learning more and connecting with individuals that had gone through HSCT, Tamra’s husband decided to take the leap and forgo medications to pursue HSCT.

Tune in and learn more about their fundraising efforts to get to Clinica Ruiz, the turnabout to pursue treatment in Chicago, and how Tamra provides support to others in the HSCT family.

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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.

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

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 Lydia to turn inward and find self-efficacy along her battle with Crohn’s disease (Ep. 42)

March 11, 2020 — Leave a comment

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?

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.

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Find confidence with Jess and learn about HSCT in Calgary (Ep. 38)

February 12, 2020 — Leave a comment

Warrior: Jess Faulds
AI: Multiple Sclerosis
HSCT: July 2019 in Calgary, CA
Superpower: Sensation and mental strength

How do you react when people stare at you? At what age did you feel confident about managing your options with autoimmune disease? Where do you find faith in humanity?

Being diagnosed with MS at 15 years young certainly wasn’t a walk in the park for Jess, but it motivated her to keep active and persistent with staying informed about her options. As someone raised to value movement and nutrition, Jess was sure to incorporate these cornerstones throughout her experience with HSCT.

Tune in and learn more about her routines that promoted a quick rebound from HSCT and the holistic approach to HSCT care and treatment at the clinics in Canada in Calgary and Ottawa.

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Resources:
Wrap Me Cool wraps
Jess Faulds on Instagram: allthrightbites
MS Society of Canada

Season Four Update with Ali Strong (Ep. 37)

February 5, 2020 — Leave a comment

Warrior: Ali Roberts
AI: Multiple Sclerosis
HSCT: 11/6/17
Superpower: Gratitude

Do you believe in the power of self-talk? That the words you say to yourself become the narrative that you fulfill? Where do you find yourself bringing attention?

Another season brings another conversation with Ali Strong about her experiences post-HSCT with diet and nutrition, exercise, stress, shingles, mindset, wellness, and personal challenges to continue promoting wellness, healing and longevity. Tune in and learn how Ali navigated wellness through the flu and shingles at two years post HSCT, then take away some valuable insights about life that she shares from her coaching perspective.

Revisit lessons of gratitude and positivity with Ali Strong

January 8, 2020 — Leave a comment

Warrior: Ali Strong
AI: MS
HSCT: 11/6/17
Superpower: Gratitude

Where do you find yourself bringing attention in life? Are you able to find goodness with your current state of being? What have been your most important lessons in life?

Embrace a shift from the typical podcast interview and listen in on Jen’s conversation to check in with Ali Strong on her HSCT journey, and share more about the new nonprofit, HSCT Warriors, Inc. for which Ali serves on the Advisory Board. Tune in and be inspired to integrate strategies that calm the mind and nerves, and be encouraged to find ways to shift the sense of control, or make time in a busy day to nourish yourself.

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 appreciate all your support, and if you’re looking to contribute in other ways – including volunteering or monetarily – we’d love to hear from you. 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

Illuminating invisibilities of autoimmune disease

#therapy

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

Check-in with Denise and celebrate persistence through the recovery rollercoaster (replay from S3)

Learn more from Chris about the challenges of CIDP and diagnosis by exclusion (replay from S2)

Revisit inspiration from Tamra and find resiliency among the uncertainty (replay from S3)

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

Revisit reflections on contributions with Jarrod (replay from S3)

Join Lydia to turn inward and find self-efficacy along her battle with Crohn’s disease (Ep. 42)

Find confidence with Jess and learn about HSCT in Calgary (Ep. 38)

Season Four Update with Ali Strong (Ep. 37)

Revisit lessons of gratitude and positivity with Ali Strong

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