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.

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.

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

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

HSCT Warriors Podcast

Illuminating invisibilities of autoimmune disease

#transformation

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

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)

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

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