Living Chronic: Ability At Work

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Building the Chronic Illness Support System: The Story of the Chronic Illness Hotline

In this episode, Brandy Schantz speaks with Cyndii Sinex , founder of the Chronic Illness Hotline, about the vital need for accessible mental health support and peer connection in the chronic illness community. They explore the origins, challenges, and future plans of creating a dedicated mental health resource that addresses a significant gap in healthcare.

Key topics

• The inspiration behind founding the Chronic Illness Hotline in 2019
• The impact of COVID-19 on increasing chronic illness prevalence
• The importance of peer support and shared experiences in managing illness
• Challenges faced in healthcare systems, including lack of personalized advice and follow-up
• The role of the hotline in addressing mental health crises specific to chronic illness
• How the hotline plans to relaunch and expand services with fundraising efforts
• The significance of employment, purpose, and routine in mental health for chronically ill individuals
• Ensuring data security and confidentiality in emotional support services
• Advocating for systemic change through community and policy engagement

Timestamps

00:00 - Introduction to Cyndii Sinex and the purpose of the hotline
 01:00 - The genesis of the Chronic Illness Hotline concept in 2019
 01:42 - COVID-19's role in increasing chronic illness diagnoses
 02:05 - The gap in healthcare education and peer support reliance
 02:49 - Personal stories emphasizing the importance of community and shared knowledge
 03:58 - Common misconceptions about symptoms and the validation from community support
 04:37 - The emotional impact of shame and validation in chronic illness
 05:01 - The broad scope of the hotline encompassing various chronic and neurodivergent conditions
 05:14 - How self-advocacy, preparation, and self-education can be life-saving
 05:41 - Challenges with healthcare system follow-up and the need for peer-led adjustments
 06:43 - Daily struggles with medication and insurance frustrations
 07:25 - The impact of systemic issues such as prescription flags and pharmacy errors
 08:09 - The toll of repeated small frustrations and the resilience built through community
 09:25 - The toll on mental health and the importance of support systems
 10:15 - How the hotline helps share stories, coping strategies, and combat medical trauma
 11:04 - The importance of creating space for venting and emotional release
 11:33 - Anonymity and confidentiality protections for texters
 12:23 - The current pause and fundraising needs for relaunching the hotline
 13:28 - The integration of mental health support within the hotline in response to the crisis
 14:10 - The ongoing grief and loss related to employment and identity
 15:07 - Comparison with veteran and VA hotlines, emphasizing the need for specialized support
 16:14 - The trust issues with traditional healthcare and the importance of community-led initiatives
 17:09 - The nonprofit structure, funding, and plans for growth and independence
 18:21 - How donations and social support can help relaunch the hotline
 21:21 - The expanded services planned, including emotional support, celebrating wins, and connecting community resources
 22:45 - The importance of resource guides and connection to programs like vocational rehab
 23:54 - The critical need for employment opportunities and purpose in mental health
 26:48 - The community’s shared experiences, touching on the social isolation of chronic illness
 28:41 - Small steps for mental well-being, daily routines, and celebrating progress
 34:27 - Use of the hotline as symptom tracking and accountability tool
 36:09 - Data security and confidentiality as top priorities for trust and safety
 37:15 - How to donate and support the hotline’s relaunch efforts
 38:51 - The vision to influence policy and create systemic change through community voices

Resources & Links

• Chronic Illness Hotline — Support and donate to the service
• ANCORA — Fiscal Sponsorship Organization — The nonprofit under which the hotline is currently operating
• VOCATIONAL REHABILITATION SERVICES — Support for employment for people with disabilities
• 988 Crisis & Suicide Prevention Hotline — Additional mental health support for crises

Connect with Cyndii Sinex

• [LinkedIn](https://www.linkedin.com/in/cyndii/

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Living Chronic: Embracing the Long Middle of Chronic IllnessIn this episode of Living Chronic, Brandy Schantz and guest Mary Monoky explore the profound journey of living with chronic illness, focusing on the often-overlooked "long middle" — the lengthy, uncertain phase between onset and resolution. They share personal stories, insights on trauma, and the importance of resilience, connection, and understanding in navigating this complex experience.

• The motivation behind sharing chronic illness stories later in life, including the freedom to be open about personal struggles

• The significance of Maslow's hierarchy of needs in managing chronic illness survival and growth

• The cycle of giving up and picking oneself up again, illustrating resilience in the face of repeated health crises

• How animals and nature serve as anchors for mental well-being and motivation during long-term health struggles

• The concept of the "long middle" — the enduring, often invisible phase of chronic illness lasting decades

• The challenges of navigating complex healthcare systems, diagnosis delays, and unrecognized symptoms

• The impact of chronic illness on loved ones, including trauma, invisibility, and changing family dynamics

• The importance of listening to and trusting your body, using tools like wearable data for self-monitoring

• The critical need for greater understanding and treatment options for dysautonomia and related conditions

• A call to honor the trauma experienced by both patients and loved ones, recognizing the interconnected ripple effects

Note: This episode is a deep dive into the emotional, physical, and social nuances of long-term chronic illness. If you're living through the "long middle," you're not alone and your experience is valid and shared by many.

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In this episode of Living Chronic, Brandy Schantz interviews Jeremy Tammone, a veteran who shares his harrowing experience of being shot and the profound impact it has had on his life. Jeremy recounts the night of the incident, his miraculous survival against the odds, and the significant changes he has faced since then. The conversation delves into themes of resilience, grief, and the ongoing journey of adapting to a new reality after trauma. Jeremy's story is one of hope, strength, and the importance of finding purpose in the face of adversity. In this conversation, Jeremy Tammone and Brandy Schantz discuss the profound impact of mental health on individuals with disabilities, the journey towards justice after traumatic events, and the importance of support systems. They explore the challenges of reinventing oneself after life-altering experiences and the necessity of acceptance in moving forward. The conversation also highlights the critical need for organ donation and the role of community in healing.

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In this episode of "Living Chronic," Brandy Schantz delves into her personal journey with dysautonomia, shedding light on the latest research, treatment options, and systemic challenges faced by patients. She talks about Long Covid and related dysautonomia and how to navigate the healthcare system and treatment options. The discussion covers the biological basis of autonomic nervous system dysfunction, treatment strategies, and the importance of diagnosis and validation. Brandy also addresses the impact of workplace policies, the need for flexible accommodations, and offers advocacy tips for patients. This episode is a beacon of hope and validation for those dealing with post-viral autonomic issues.

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In this episode of Living Chronic, host Brandy Schantz speaks with Dr. Norman Gaylis, a board-certified rheumatologist who has become an expert in long COVID. Dr. Gaylis shares his serendipitous journey into researching long COVID, which began during the COVID pandemic when he was involved in developing a monoclonal antibody for patients suffering from post-COVID symptoms. He discusses the complexities of long COVID, including symptoms like brain fog, fatigue, and joint pain, and highlights the role of autonomic dysfunction in these patients. Through clinical research, Dr. Gaylis discovered significant dysautonomia in long COVID patients, leading to a better understanding of their symptoms and potential treatment options.

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In this conversation, Brandy Schantz and Emily Ann Mendenhall discuss the complexities of invisible illnesses, particularly in women's health. They explore the intersection of trauma and chronic illness, the challenges of navigating the healthcare system, and the biases that often affect patient care. Mendenhall shares insights from her research and her book, 'Invisible Illness,' emphasizing the need for comprehensive care models and greater empathy in medical practice. The discussion highlights the historical context of women's health issues and the importance of understanding the unique experiences of patients with invisible illnesses.

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In this conversation, Brandy Schantz and Dani Fogel discuss the complexities of living with multiple chronic illnesses, including dysautonomia and leukemia. They explore the challenges of navigating the healthcare system, the impact of medical trauma, and the importance of patient advocacy. The discussion highlights the need for empathy in medicine, the struggles of finding good care, and the coping mechanisms that help them manage their conditions. They also touch on the role of humor and entertainment in their lives, particularly through reality TV, as a way to cope with their experiences.

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The discussion centers around the innovative model of a center that integrates essential services for people with disabilities, emphasizing the importance of accessibility and community engagement. The conversation highlights the legislative support in Colorado and the center's role in providing comprehensive care under one roof.

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In this episode of Living Chronic, Brandy Schantz speaks with Ayden Kosko about her journey with multiple chronic illnesses, including endometriosis, POTS, and food allergies. They discuss the challenges of seeking medical help, the importance of self-advocacy, and the need for better understanding of women's health issues. Ayden shares her experiences with navigating her diagnoses, the impact on her daily life, and the significance of finding community support. The conversation emphasizes the importance of shifting perspectives on life with chronic illness and embracing personal growth.

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Join host Brandy Schantz as she delves into the fascinating world of exosomes and anti-aging with Dr. Edward Park, a Harvard-trained MD and author of "Exomes Songs of Healing." Discover how these tiny cellular messengers are revolutionizing the way we understand healing and regeneration. Dr. Park shares insights from his extensive experience, discussing the potential of exosomes in treating chronic conditions and enhancing longevity. Whether you're a healthcare professional or simply curious about cutting-edge medical advancements, this episode offers valuable perspectives on the future of medicine. Tune in to explore the science behind the songs of healing.

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