My Invisible Disease

Amanda, a resilient and determined advocate for invisible diseases, embarks on a mission to shatter misconceptions, forge connections, and reclaim her identity amidst the isolating journey of chronic illness. She has firsthand experience living with lupus, an incurable autoimmune disease. After going undiagnosed for 21 years, Amanda has gained a deep understanding of the challenges that come with seeking a diagnosis and navigating the early years of living with an invisible disease. She recently released a book called "The Girlfriend's Guide to Lupus" and is dedicated to sharing her experiences and offering support to others in similar situations. Amanda's journey is not only inspiring but also sheds light on the impact of invisible diseases on mental health. Her story serves as a reminder that even in the face of adversity, it is possible to find hope and support within a community of understanding individuals.

https://amandachay.com/

Link to Book The Girlfriend's Guide to Lupus

We often live a reactive lifestyle when it comes to our health, but being preventative and taking care of ourselves early on can make a significant difference in our well-being. - Amanda Chay

Bio
Amanda Chay is an author, entrepreneur, and lifelong health nut who has helped countless businesses and individuals put their health first. With a master's degree in counseling and as the owner of a stress reduction and mindfulness training company, Amanda brings a wealth of expertise to her work. She is a member of the University of North Carolina Lupus Stakeholder Advisory Board and is a Lupus Foundation of American external affairs committee member for NC. When she’s not planning her next travel adventure with her daughters and husband, she’s drinking jasmine tea, teaching yoga, and giving book suggestions to anyone willing to listen. Learn more at AmandaChay.com.

In this episode, you will be able to:

Importance of community support

Community support plays a crucial role in navigating chronic illnesses. It offers a platform for sharing experiences, enhancing understanding, and cultivating validation for the daily struggles with invisible diseases. This support is vital for empowering individuals with chronic illnesses, helping them feel less alone, and providing a network of understanding that extends beyond their immediate environment.

The resources mentioned in this episode are:

Get ready to meet Saffron Cassady, a talented filmmaker and an incredible woman who has been living with ulcerative colitis since her early twenties. With her background in filmmaking, Saffron took her personal experiences with chronic illness and turned them into a powerful documentary. She dives deep into the world of alternative treatments for ulcerative colitis, shining a spotlight on the intriguing and somewhat unconventional practice of fecal microbiota transplantation (FMT). Saffron's storytelling skills and her own journey with ulcerative colitis make her the perfect guest for this episode. Her documentary is not only informative, but also entertaining, capturing the struggles and triumphs of living with a chronic illness. Prepare to be inspired and educated by Saffron's incredible story and her dedication to raising awareness about FMT as a potential treatment option.

"I think it changes your identity that you have of yourself...It was really hard to kind of come to terms with that new identity that had been placed on myself." - Saffron Cassady

Wide Release: November 14, 2023

https://www.designershitdocumentary.com/

https://www.instagram.com/designershtdocumentary/

In this episode, you will be able to:

The resources mentioned in this episode are:

Saffron Cassaday - Director/Subject

Saffron Cassaday was born in Toronto and traveled to New York City immediately after

completing high school to pursue acting at the prestigious Lee Strasberg Theatre and Film

Institute. Upon returning to Toronto, she continued to cultivate her acting skills, appearing in 15

feature films and 2 TV series, while working as an assistant director and editor on several online,

TV and corporate projects.

In 2014 Saffron directed her first documentary feature film called "Cyber-Seniors". The film

screened at 14 film festivals (winning Audience Choice at the High Falls Film Festival), and

played to packed houses in over 500 communities. Cyber-Seniors was nominated for Best

Foreign Trailer - Golden Trailer Awards - 2014, and for the American Library Association Notable

Videos for Adults - 2016. Saffron has received well over 200 accolades for the film and her work,

several coming from the most prestigious media outlets in North America including the New

York Times, LA Times, Village Voice and Hollywood Reporter. The film has been broadcast in 40

countries including on PBS, Netflix and CBC in North America. Cyber-Seniors has also inspired a

social campaign, which to date has reached over 800 million individuals through events,

traditional media and social media, and is supported by over 900 partners including AARP

foundation, Best Buy foundation, Consumer Technology Association, CVS, Senior Corp, TELUS,

BlueCrossBlueShield Mn, and hundreds of other organizations throughout the United States and

Canada.

Struggling with relentless health issues that seemed to have no cure, Heather Gray's life was a constant battle. From Lyme disease at 13 to severe neurological problems, she felt abandoned by the Western medicine system. But just when she thought all hope was lost, a chance encounter with a podcast introduced her to a revolutionary concept – functional testing. Through this alternative approach, Heather discovered surprising and life-changing insights about her health, from hidden food sensitivities to hidden heavy metals. Join us in this inspiring journey as we delve into the unexpected twist that led Heather to finally understand her body, leaving us all wondering: What other hidden truths could functional testing reveal?

In this episode, you will be able to:

• Unearth the importance of functional testing for a holistic assessment of your health.
• Understand how food sensitivities can significantly disrupt hormonal balance.
• Identify the subtle signs of mold toxicity and its detrimental effects on health.
• Grasp the power of healthy foundations to enhance your overall well-being.
• Empower yourself with effective self-care strategies to take charge of your health journey.

Heather Gray is a renowned Functional Diagnostic Nutrition practitioner who has rightfully earned herself the title of Lyme Boss. Navigating through her own health trials, she discovered the significance of functional medicine, witnessing a tremendous transformation in her own life. With a mission to help others, her expertise lies in utilizing functional lab work to pinpoint the root causes of health issues rather than just treating the symptoms. Heather’s personal journey spans from dealing with autoimmune diseases, Lyme disease, to overcoming serious mental health challenges. Her real-life experiences have imparted empathy and a unique understanding of holistic health in her role as a healthcare professional.

To book an appointment, purchase my book, or check out my YouTube, Website, or other social media please click here

https://thelymeboss.com/
https://linktr.ee/thelymeboss

The key moments in this episode are:
00:00:00 - Heather's Health Journey, 

00:07:51 - Becoming Your Own Health Advocate, 

00:10:34 - Discovering Functional Diagnostic Nutrition, 

00:11:35 - The Value of FDN, 

00:12:24 - Heather's Personal Experience with FDN, 

00:13:57 - Importance of Functional Testing, 

00:16:40 - Personal Journey and Peeling Back Layers, 

00:19:23 - Evaluating Mold in Your Environment, 

00:23:17 - Starting Point for Healing, 

00:26:05 - The Power of Breath Work, 

00:27:38 - Importance of Free Breathing Exercises, 

00:29:12 - Heather's Tried and True Self-Care Practices, 

00:30:45 - Frustrations with Misunderstandings of Gluten-Free Diets, 

00:34:03 - Issues with Food Standards and Organic Products

Instant Brands 
Buy More - Save More at Instant Home! Up to 25% Off with code LUCKYME 

Connect with us here:

Website: https://myinvisibledisease.com

YouTube: https://www.youtube.com/https://www.ychannel/UC84nwpRzu-EzBtz7Z7Yz6zw

Twitter: https://www.twitter.com/MyInvisibeDis

Facebook: https://www.facebook.com/groups/myinvisibledisease

Instagram: https://www.instagram.com/myinvisiblediseasepodcast/

Advanced Directives and Advocacy: Jenna Swanson's Journey with Chronic Illness

Join resilient nurse Jenna Swanson as she battles Vesicoureteral Reflux and Chronic Kidney Disease, advocating for self-care and self-advocacy amidst the trauma and isolation of living with chronic illness.

My special guest is Jenna Swanson

Jenna Swanson is a loving mother of two who has been living with chronic illness since childhood. She was born with congenital chronic renal failure, which has led to multiple surgeries and issues with her bladder. Jenna has bravely faced these challenges and inspired her to advocate for organ donation and palliative care. As an expert in coping with chronic illness, she is eager to share her experiences and strategies that have helped her maintain emotional resilience and become a strong self-advocate for her health care needs.

This is Jenna Swanson's story:

For Jenna Swanson, living with chronic illness has been a lifelong reality. Diagnosed with congenital renal failure at birth, she has faced countless surgeries, hospital stays, and setbacks that have only served to strengthen her resilience. Throughout these challenges, Jenna found comfort and inspiration in the unwavering support of her nurses, leading her to become a registered nurse herself. Now a mother of two, Jenna is acutely aware of her own mortality and the significance of advocating for organ donation. Despite the numerous hurdles she continues to face daily, Jenna remains a beacon of determination and hope. She encourages others in similar situations to accept and embrace their circumstances, use their insight to advocate for themselves and others, and learn to process their grief and trauma in a healthier way.

The key moments in this episode are:
00:00:00 - Introduction, 

00:05:08 - Advanced Directives and Organ Donation, 

00:10:40 - Living with Chronic Illness and Mortality, 

00:12:29 - Grief and Family, 

00:13:49 - Childhood Trauma and Postpartum Depression, 

00:17:28 - Advocating for Your Health, 

00:18:30 - Living with Chronic Illness, 

00:22:40 - Nursing with Chronic Illness, 

00:27:16 - Pregnancy and Chronic Illness, 

Instant Brands 
Buy More - Save More at Instant Home! Up to 25% Off with code LUCKYME 

Connect with us here:

Website: https://myinvisibledisease.com

YouTube: https://www.youtube.com/https://www.ychannel/UC84nwpRzu-EzBtz7Z7Yz6zw

Twitter: https://www.twitter.com/MyInvisibeDis

Facebook: https://www.facebook.com/groups/myinvisibledisease

Instagram: https://www.instagram.com/myinvisiblediseasepodcast/

Sarah Young's life seemed destined for struggle, from her childhood diagnosis of Crohn's disease to raising a neurodivergent child. But what's surprising is how she found the strength to persevere and thrive. Through her journey, she discovered the importance of self-care for special needs moms and the unique gifts of neurodivergent children. So, what's the twist? Despite facing adversity at every turn, Sarah's story is one of resilience, hope, and a reminder that even in the toughest moments, there is beauty to be found. How did she do it? Let's find out.

Resilient and determined neurodivergent mom Sarah Young shares her tips for self-care and supporting neurodivergent children, navigating the ironic challenges of managing her own health while raising a child with ADHD.

In this episode, you will be able to:

• Gain a deeper understanding of life with chronic illness through candid experiences and challenges.
• Recognize the crucial role that community plays in supporting individuals dealing with persistent health issues.
• Obtain practical advice for navigating the complex world of healthcare with a chronic illness.
• Explore the importance of being your own advocate in healthcare settings and as a parent.
• Dive into the world of self-care for mothers of special needs children and celebrating neurodiversity within the family.

My special guest is Sarah Young

Meet Sarah Young, a passionate advocate for special needs moms and a firm believer in the importance of self-care and embracing neurodivergent children. As a mother of a special needs child herself, Sarah knows firsthand the challenges that parents can face. She is dedicated to providing support, guidance, and encouragement to other special needs moms navigating this journey. Drawing from her own experiences and the inspiring stories of those she has met along the way, Sarah's insight and wisdom make her an invaluable resource for anyone seeking to better understand the world of special needs parenting while also prioritizing their personal well-being.

She became obsessed with helping other moms have what they need to be the best advocate they could be! So she created a FREE PARENT ADVOCACY TOOLKIT! She has packed it full of resources so you no longer have to spend hours searching for the best ways to handle a meltdown or why your child will not eat certain foods or what your state's special education laws are. She did the searching for you! 

Just click this link to get it straight to your inbox!

The key moments in this episode are:
00:00:00 - Introduction, 

00:03:03 - Diagnosing Crohn's at a Young Age, 

00:07:20 - Coping with Crohn's as a Teenager, 

00:11:42 - Support System in Dealing with Chronic Illness, 

00:13:05 - Impact of Chronic Illness on Relationships, 

00:14:51 - Sarah's Journey with Crohn's Disease, 

00:18:30 - The Comp

Instant Brands 
Buy More - Save More at Instant Home! Up to 25% Off with code LUCKYME 

Connect with us here:

Website: https://myinvisibledisease.com

YouTube: https://www.youtube.com/https://www.ychannel/UC84nwpRzu-EzBtz7Z7Yz6zw

Twitter: https://www.twitter.com/MyInvisibeDis

Facebook: https://www.facebook.com/groups/myinvisibledisease

Instagram: https://www.instagram.com/myinvisiblediseasepodcast/

Does this sound familiar? You're struggling with an invisible disease, feeling alone and isolated. You've been told to just tough it out or stay positive, but it's not helping. In fact, it's making you feel even more frustrated and misunderstood. The pain of being dismissed and unsupported can be overwhelming. But there's hope. Finding a supportive community can make all the difference in your health journey. Not only will you feel a sense of belonging, but you'll gain coping skills and be inspired by others' stories of resilience. Don't suffer in silence any longer. Join us as we explore the importance of finding a supportive community.

In this episode, you will be able to:

• Discover the inspiring stories of coping with chronic illness and overcoming daily hurdles.
• Learn about various liver transplant options and the benefits of living donor vs. cadaveric donor choices.
• Uncover the significance of connecting with a supportive community on your health journey.
• Gain insights into nutritious meal options tailored for individuals with chronic illness.
• Recognize the importance of shedding light on invisible diseases and fostering empathy for those affected.

The resources mentioned in this episode are:

• Visit our website at myinvisibledis.com to apply to be a guest on the podcast if you have a story to share.
• Follow us on Instagram to join our community and connect with others living with invisible diseases.
• Check out the resources section on our website for helpful tools and information.
• Consider donating to organizations that support research and advocacy for invisible diseases, such as the Invisible Disabilities Association or the National Organization for Rare Disorders.
• Talk to your doctor about potential treatment options for your invisible disease and ask for referrals to specialists if needed.
• Attend support groups or online forums to connect with others who are going through similar experiences.
• Consider purchasing products that can help with symptom management, such as compression garments or mobility aids.
• Advocate for yourself and others by sharing your story and raising awareness about invisible diseases.

Instant Brands 
Buy More - Save More at Instant Home! Up to 25% Off with code LUCKYME 

Connect with us here:

Website: https://myinvisibledisease.com

YouTube: https://www.youtube.com/https://www.ychannel/UC84nwpRzu-EzBtz7Z7Yz6zw

Twitter: https://www.twitter.com/MyInvisibeDis

Facebook: https://www.facebook.com/groups/myinvisibledisease

Instagram: https://www.instagram.com/myinvisiblediseasepodcast/

Are you looking for a way to cultivate emotional wellbeing and positivity? Julie Fry is here to share her insight on how to promote joy and self-care through gratitude practices.

In this episode, you will be able to:

• Master the complexities of chronic lymphocytic leukemia diagnosis and treatment for improved decision-making.
• Achieve harmony between entrepreneurship, motherhood, and managing a chronic illness.
• Discover invaluable support, resources, and advocacy advice for cancer patients and their loved ones.
• Explore groundbreaking clinical trials, therapies, and ways to monitor remission in CLL patients.
• Begin embracing gratitude and self-care practices to cultivate positivity and resilience in your life.

My special guest is Julie Fry

Get to know Julie Fry, an inspiring entrepreneur, dedicated mother, and chronic lymphocytic leukemia (CLL) survivor who has harnessed the power of gratitude and self-care to maintain positivity in her life. Julie's journey through her CLL diagnosis, treatment, and balancing motherhood and entrepreneurship is a testament to her strength and resilience. By embracing gratitude practices and self-care, she was able to maintain her well-being and foster a positive outlook on life. Julie's story offers hope and encouragement to others facing similar challenges and seeking support through self-care and positivity.

About Julie

Julie Fry is the Founder of Your Expert Guest, a podcast guest booking agency for service providers and impact-driven leaders that want to speak directly to their ideal client without spending HOURS on social media.

She and her team have booked over 1500 interviews for their clients and can track hundreds of thousands of dollars of business back to being a podcast guest on top-ranked shows.

When she’s not working with her amazing team of guest and host matchmakers, she loves spending time with her family, kayaking, laughing hysterically at SNL sketches and of course, listening to podcasts.

Links:

https://yourexpertguest.com

IG: https://www.instagram.com/yourexpertguest/

LInkedIN: https://www.linkedin.com/in/fryjulie/

The resources mentioned in this episode are:

• Visit a doctor if you notice swollen lymph nodes for an extended period of time without being sick.
• Seek multiple medical opinions if the initial doctor dismisses your concerns.
• Request a referral to an oncologist if blood work shows concerning markers.
• Go through a biopsy to get a more accurate diagnosis of lymphoma or other blood cancers.
• Seek treatment at a specialized cancer center, such as Seattle Cancer Care Alliance, if possible.
• Monitor your health through regular lab work and appointments with your oncologist.
• Be prepared for a watch and wait protocol if chemotherapy is not the best treatment option for your specific diagnosis.
• Look into oral therapy options for treatment if chemotherapy is ruled out.
• Consider the impact of being self-employed and having a chronic illness on your overall well-being.
• Advocate for yourself and

Instant Brands 
Buy More - Save More at Instant Home! Up to 25% Off with code LUCKYME 

Connect with us here:

Website: https://myinvisibledisease.com

YouTube: https://www.youtube.com/https://www.ychannel/UC84nwpRzu-EzBtz7Z7Yz6zw

Twitter: https://www.twitter.com/MyInvisibeDis

Facebook: https://www.facebook.com/groups/myinvisibledisease

Instagram: https://www.instagram.com/myinvisiblediseasepodcast/

Does this sound familiar? You're struggling with an invisible disease, feeling alone and isolated. You've been told to just tough it out or stay positive, but it's not helping. In fact, it's making you feel even more frustrated and misunderstood. The pain of being dismissed and unsupported can be overwhelming. But there's hope. Finding a supportive community can make all the difference in your health journey. Not only will you feel a sense of belonging, but you'll gain coping skills and be inspired by others' stories of resilience. Don't suffer in silence any longer. Join us as we explore the importance of finding a supportive community.

In this episode, you will be able to:

• Discover the inspiring stories of coping with chronic illness and overcoming daily hurdles.
• Learn about various liver transplant options and the benefits of living donor vs. cadaveric donor choices.
• Uncover the significance of connecting with a supportive community on your health journey.
• Gain insights into nutritious meal options tailored for individuals with chronic illness.
• Recognize the importance of shedding light on invisible diseases and fostering empathy for those affected.

The key moments in this episode are:
00:00:00 - Introduction, 

00:03:47 - Importance of Sharing Stories

00:06:09 - Kassy's Health Update

00:09:48 - Navigating Autoimmune Illness 

00:13:14 - Anxiety with Medication Injection, 

00:15:51 - Differences Between Cadaver and Live Donor Liver Transplants

00:17:06 - Coping with Devastating News

00:19:05 - Kidney Transplants 

00:25:43 - Finding Connection in Shared Experiences

00:30:47 - Join Our Community

Instant Brands 
Buy More - Save More at Instant Home! Up to 25% Off with code LUCKYME 

Connect with us here:

Website: https://myinvisibledisease.com

YouTube: https://www.youtube.com/https://www.ychannel/UC84nwpRzu-EzBtz7Z7Yz6zw

Twitter: https://www.twitter.com/MyInvisibeDis

Facebook: https://www.facebook.com/groups/myinvisibledisease

Instagram: https://www.instagram.com/myinvisiblediseasepodcast/

River Staines was just 22 and facing an incurable chronic illness. With numerous healing modalities and a newfound gift for energy work, she was determined to not accept her fate. Against all odds, her remarkable strength and resilience allowed her to heal herself and find her true calling. What was this unexpected twist in River's story that gave her a newfound sense of purpose?

After years of misdiagnoses, invasive tests, and relentless searching for answers, our protagonist has found a way to heal her unexplained symptoms--until her doctor tells her the cure may have permanent side effects. With no other options left and mounting pressure from her employer, she takes the risk of energy work, but the journey to remission will be a long, harrowing one. Will she find her miracle cure? Or will she remain broken?

In this episode, you will be able to:

• Experience healing from chronic illness through alternative methods and energy work.
• Delve into how Reiki, Akashic Records, and shamanic journeying was used to enhance personal healing.
• Tackle emotional trauma, self-worth, and life purpose amidst chronic illness.
• Apply Rapid Resolution Therapy and Compassion Key for focused trauma recovery.
• Uncover personal values and nurture self-compassion in the face of chronic illness.

Our guest is River Staines

River Staines, a gifted mindset coach and healer, specializes in guiding individuals through emotional trauma, self-worth, and finding purpose amidst chronic illness. With a personal journey that began in her early 20s, River dealt with her own chronic illness, leading her to explore over 84 healing modalities before finding success in energy work. Now, she passionately shares her knowledge and experience with others seeking relief from chronic illness. River is a beacon of hope and an inspiring example of resilience, determination, and the power of the human spirit.

Bio:

River Staines is a mindset coach and healer who helps overachievers redirect energy from self-sabotage, shame, and resentment to reinvent their most extraordinary life and align with the peace they desire. Trained in more than 20 healing modalities, River uses her background in business and psychology to facilitate bespoke, efficient transformation. River is also an author, songwriter, traveler, former triathlete, and animal lover.

Links:

https://www.instagram.com/infiniteliminalspace

Free 5-minute audio meditation for physical healing: https://geni.us/physicalmeditation

Website: infiniteliminalspace.com

Instant Brands 
Buy More - Save More at Instant Home! Up to 25% Off with code LUCKYME 

Connect with us here:

Website: https://myinvisibledisease.com

YouTube: https://www.youtube.com/https://www.ychannel/UC84nwpRzu-EzBtz7Z7Yz6zw

Twitter: https://www.twitter.com/MyInvisibeDis

Facebook: https://www.facebook.com/groups/myinvisibledisease

Instagram: https://www.instagram.com/myinvisiblediseasepodcast/

Paralyzed just weeks after giving birth to her first child, Holly Frances struggles to adjust to her new reality as she courageously battles Guillain-Barre Syndrome with the help of her inspiring support system and a conquering spirit.

In this episode, you will be able to:

• Discover the intricacies and symptoms of Guillain-Barre Syndrome, a rare autoimmune disorder.
• Understand the significance of early diagnosis and treatment for improving recovery outcomes.
• Learn effective self-care strategies and pacing techniques to manage chronic fatigue and nerve pain.
• Appreciate the value of support networks involving family, friends, and online communities for emotional well-being.
• Delve into Holly's story of advocacy and her book, Life Support: Surviving Guillain-Barre Syndrome.

“Courage doesn’t always roar. Sometimes
courage is the quiet voice at the end of the day
that says, ‘I will try again tomorrow.’”
~~ Mary Anne Radmacher

Our special guest is Holly Frances

Holly Frances, a dedicated mother and author, is joining us to share her incredible journey of overcoming the rare autoimmune disorder, Guillain-Barre Syndrome. After experiencing sudden and severe paralysis following the birth of her daughter, Holly fought her way back to recovery, eventually penning her inspiring book, Life Support: Surviving Guillain-Barre Syndrome. Her resilience and commitment to raising awareness about this rare condition make her a truly inspiring guest.

Bio: Holly Frances is the author of Life Support, Surviving Guillain-Barre Syndrome, the true story of how she turned her medical horror after the birth of her daughter into a crusade of helping others. She is a mom in a blended family of six (including pup Benji) and the face behind Holly After GBS on social media, where her recovery videos have inspired millions of people around the world. Holly’s works in Human Resources but her passion is in GBS advocacy and fitness.

Website: https://www.hollyaftergbs.com

Facebook: https://m.facebook.com/hollyaftergbs/

Instagram: https://www.instagram.com/hollyaftergbs/

YouTube: https://www.youtube.com/hollyaftergbs

TikTok: https://www.tiktok.com/@hollyaftergbs

Book Link: https://www.amazon.ca/dp/B0BP9MV69J?ref_=cm_sw_r_mwn_dp_1TSS25A71TKY767V57NK

The resources mentioned in this episode are:

• Purchase Holly Frances' book, Life Support: Surviving Guillain-Barre Syndrome, to learn more about her journey and experiences with GBS.
• Research Guillain-Barre Syndrome (GBS) to better understand the condition and its impact on those affected.
• Explore treatment options for GBS, such as IVIG and plasma paresis, and discuss with a medical professional if you or someone you know may be experiencing symptoms.
• Reach out to others living with GBS or other invisible diseases for support and community, potentially through online forums or local sup

Instant Brands 
Buy More - Save More at Instant Home! Up to 25% Off with code LUCKYME 

Connect with us here:

Website: https://myinvisibledisease.com

YouTube: https://www.youtube.com/https://www.ychannel/UC84nwpRzu-EzBtz7Z7Yz6zw

Twitter: https://www.twitter.com/MyInvisibeDis

Facebook: https://www.facebook.com/groups/myinvisibledisease

Instagram: https://www.instagram.com/myinvisiblediseasepodcast/