Patient Power & Joy: Affordable Advocacy, Safe Spaces & Why Community Beats AI Art | Faye

Are you tired of navigating the broken healthcare system alone? 💔

In this uplifting and essential episode, we reconnect with the incredible Faye to dive deep into Independent Patient Advocacy. This conversation is your guide to feeling heard and supported in your health journey, combining practical advocacy tips with empowering discussions on community and creativity.

What We Cover & Why You Need to Listen:

• 02:49 - Patient Power: Understanding the crucial Role of Independent Patient Advocacy and how it can literally change your health outcomes.
• 05:57 - Healthcare Hacks: Practical strategies for Navigating the Healthcare System and avoiding medical gaslighting.
• 11:46 - Affordable Support: Learn about The Butterfly Guild and how they are providing vital, affordable advocacy services for chronic illness patients.
• 14:34 - Positive Vibes: Discover The Good News Gazette—a source of light and hope in the often-dark world of chronic illness. ✨
• 22:26 - Art vs. AI: A fascinating discussion on the Importance of Real Art Over AI and the unique value of human creativity in the disability space. 🎨
• 27:42 - Find Your Tribe: The undeniable Value of Community in the chronic illness journey and how we can build Supportive Community for All.

This episode is a must-listen for chronic illness patients, caregivers, advocates, and anyone interested in healthcare reform and the powerful impact of human connection.

LISTEN NOW! 👇

independent patient advocacy, affordable advocacy services, butterfly guild, navigating the healthcare system, patient safe spaces, medical gaslighting, chronic illness community, chronic illness support, disability advocacy, healthcare reform, joy and community, art vs ai, human creativity, aging and authenticity, universal income for artists, chronic illness podcast, patient empowerment, good news gazette, Faye, health advocacy tips, systemic healthcare issues.

#PatientAdvocacy #ChronicIllnessWarrior #SpoonieLife #AffordableAdvocacy #HealthcareHacks #MedicalGaslighting #CommunitySupport #ArtVsAI #DisabilityCommunity #HealthPodcast #FindYourTribe #SupportSmallBusiness #ChronicLife #JoyThroughArt #HealthTech #ButterflyGuild #PatientPower 💪🦋🧠💻

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Uncovering the Radical Legacy of Disability Activist Ed Roberts with Biographer Scott Danforth

Keywords

Ed Roberts, disability rights, activism, biography, independence, community, technology, publishing, women in activism, accessibility

Takeaways

Ed Roberts was a pivotal figure in the disability rights movement.

His activism began at UC Berkeley with the Rolling Quads.

The fight for disability rights is ongoing and requires constant vigilance.

Family dynamics play a crucial role in fostering independence for disabled individuals.

Community building is essential for effective activism.

Technology can greatly enhance accessibility for disabled individuals.

The Center for Independent Living was a groundbreaking initiative for disability rights.

Women played a significant but often overlooked role in the disability rights movement.

Writing a biography involves difficult choices about what to include or exclude.

The publishing process can be challenging, especially for underrepresented stories.

Summary

This conversation explores the life and legacy of Ed Roberts, a pivotal figure in the disability rights movement. Scott Danforth, the author of a biography on Roberts, discusses the challenges and triumphs of advocating for disability rights, the importance of community and independence, and the role of technology in enhancing accessibility. The conversation also touches on the often-overlooked contributions of women in the movement and the complexities of writing a biography. Danforth shares insights from his research and the publishing process, emphasizing the need for continued advocacy and the importance of storytelling in the fight for disability rights.

Titles

Unveiling Ed Roberts: A Disability Rights Pioneer

The Legacy of Ed Roberts and Disability Activism

Sound bites

"This is not a very well-known man."

"He had polio as a teenager."

"He loved the technology."

Chapters

00:00 Introduction to Ed Roberts and His Legacy

02:13 The Fight for Disability Rights

09:07 Independence and Family Dynamics

14:53 Building Community and Activism

21:28 Technological Advancements and Accessibility

26:57 Revitalizing the Center for Independent Living

27:24 The Legacy of Ed Roberts and Disability Activism

28:23 Unveiling the Myths of Disability Leadership

30:49 The Unsung Heroes of the Disability Rights Movement

31:54 Chronic Illness and the Overlooked Voices

33:30 The Joys and Challenges of Writing a Biography

35:21 The Process of Research and Writing

36:17 Editing and Storytelling in Biography

38:44 Navigating the Publishing Landscape

41:25 The Journey into Disability Studies

43:58 Dreams vs. Reality in Disability Advocacy

46:46 The Importance of Community and Creativity

48:23 Joy as Resistance in Activism

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Keywords

chronic illness, relationships, conflict resolution, empathy, writing process, power imbalance, emotional management, self-help, therapy, communication

Summary

In this conversation, Lisa Gray, a marriage and family therapist, discusses the complexities of relationships when chronic illness is involved. She shares insights on conflict resolution, the importance of empathy, and how to navigate power imbalances in relationships. Lisa also delves into her writing process, the significance of finding meaning in chronic illness, and practical tools for writing and publishing. The discussion emphasizes the need for understanding, communication, and the ability to adapt in relationships affected by chronic illness.

Takeaways

Conflict increases intimacy if done right.

Healthy conflict means knowing your partner better.

Stop fighting when you're already mad.

Impulse control is key in managing conflict.

Power imbalances can affect relationships with chronic illness.

Empathy must go both ways in relationships.

Finding meaning is crucial in the grieving process.

Values can guide actions despite chronic illness.

Writing can be a therapeutic process.

Use tools that work for your energy levels.

Titles

Navigating Relationships with Chronic Illness

The Art of Healthy Conflict

Sound bites

"Empathy needs to go both ways."

"Intimacy is very broad."

"Weighted blankets are so comforting."

Chapters

00:00 Introduction to Chronic Illness and Relationships

02:55 Navigating Conflict in Relationships

06:02 Impulse Control and Managing Emotions

09:07 Power Imbalances in Relationships

11:54 Empathy in Chronic Illness Relationships

14:57 Core Skills for Managing Chronic Illness

17:42 Finding Meaning and Values in Relationships

20:55 Personal Discoveries Through Writing

23:55 Building Empathy Through Curiosity

24:15 Exploring Virtual Reality and Empathy

25:39 Relationships and Support in Chronic Illness

28:05 Intimacy and Chronic Illness

30:30 The Writing Process and Tools for Writers

38:58 Publishing Insights and Resources

Transcript

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Summary

In this conversation, Brenda Snow shares her personal journey as a patient diagnosed with multiple sclerosis and discusses her book, 'Diagnosed: The Essential Guide to Navigating the Patient Journey.' She emphasizes the universal experience of navigating chronic illness, the importance of grief and acceptance, and the need for strong doctor-patient relationships. Brenda also highlights the significance of maintaining one's identity while caregiving and the power of storytelling in healing. The discussion concludes with advice for aspiring writers and the importance of sharing personal narratives.

Chapters

00:00 Introduction to Brenda Snow and Her Journey

02:49 The Universal Patient Experience

06:48 Navigating Grief and Acceptance

12:41 The Doctor-Patient Relationship

20:42 Identity and Caregiving

26:12 Finding Growth in Adversity

31:56 The Power of Storytelling

35:40 Advice for Aspiring Writers

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Keywords

TMS, transcranial magnetic stimulation, brain injury, mental health, medical gaslighting, patient advocacy, chronic illness, technology in healthcare, self-care, mindfulness

Summary

In this conversation, Jordan Hanson shares her personal journey with transcranial magnetic stimulation (TMS), a procedure intended to treat mental health issues. She discusses the initial excitement about the treatment, the subsequent negative effects she experienced, and the challenges of navigating the medical system. The conversation highlights the importance of patient advocacy, community support, and the role of technology in managing health. Jordan emphasizes the need for awareness and understanding of the risks associated with TMS and the importance of self-care and mindfulness in coping with chronic illness.

Takeaways

TMS is a procedure that uses magnetic fields to stimulate brain activity.

Jordan experienced significant negative effects from TMS, including brain injury symptoms.

Medical gaslighting is a common issue faced by patients seeking help.

Community support is crucial for those dealing with chronic illness.

Technology, including AI, can assist in managing health and communication.

Self-care and mindfulness are essential for coping with chronic illness.

Advocacy is important to raise awareness about the risks of TMS.

Family planning can be complicated by health issues and uncertainties.

Understanding the impact of chronic illness on daily life is vital.

The journey of healing is ongoing and requires patience and support.

Titles

The Hidden Risks of TMS: A Personal Journey

Navigating the Medical Maze: Jordan's TMS Experience

Sound bites

"I was called headache girl for a year."

"I want to share my story to help others."

"I have to protect myself and my energy."

Chapters

00:00 Introduction to TMS and Jordan's Journey

01:13 Understanding the Impact of TMS on Life

01:28 Introduction and Background on TMS

04:20 Understanding Trans-Cranial Magnetic Stimulation (TMS)

07:23 The Experience of TMS Treatment

10:20 The Impact of TMS on Daily Life

13:09 Medical Gaslighting and Patient Advocacy

16:13 The Journey to Recovery and Diagnosis

19:14 Community Support and Sharing Stories

22:18 The Decision to Create a Documentary

25:13 Advocacy and Future Goals

36:11 The Need for Scientific Understanding in TMS

40:42 Coping with Chronic Illness and Disability

44:52 Navigating Family Planning Amidst Uncertainty

52:54 Leveraging Technology for Brain Injury Support

59:42 Personal Growth Through Adversity

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Epilepsy, UK Health System VS US, and How We Can Do Better: Conversation With Célestine Laurin

Summary

In this conversation, the speakers delve into the complexities of living with epilepsy and chronic illness, particularly focusing on the experiences of children and young adults. They discuss the challenges of diagnosis, the importance of support from family and friends, and the role of therapy in managing mental health. The conversation also touches on the stigma surrounding chronic illness, the impact of bullying, and practical advice for managing seizures and advocating for oneself in educational and social settings. Additionally, they explore how epilepsy is represented in the media and the need for better understanding and communication around the condition. This conversation delves into the complexities of living with epilepsy, particularly focusing on the challenges faced by women regarding medication and pregnancy. The speakers share personal experiences with the impact of epilepsy on their lives, careers, and the healthcare system. They discuss the stigma surrounding chronic illness, the importance of open communication with clients in business, and the differences in healthcare systems across countries. The conversation highlights the need for greater awareness and understanding of disability and chronic illness. In this conversation, the speakers discuss the challenges faced by individuals with disabilities, the impact of overprotection on children, and the need for inclusive spaces and universal design. They explore the healthcare systems in different countries, highlighting the disparities in access and affordability. The conversation emphasizes the importance of disability advocacy in health policy and the need for a more inclusive approach to legislation that considers the needs of all individuals, particularly those with chronic illnesses.

Keywords

epilepsy, chronic illness, mental health, therapy, support, bullying, childhood illness, accommodations, media representation, epilepsy, medication, women’s health, chronic illness, disability, healthcare, personal stories, photography, career choices, mental health, disability, healthcare, universal design, overprotection, advocacy, inclusivity, chronic illness, education, mental health, accessibility

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Chapters

00:00 Introduction to Romance Writing and Disability

05:49 Life Changes During the Pandemic

11:53 Writing Romance with Chronic Illness

17:55 Representation of Disability in Romance

24:35 The Viral Success of a Romance Novel

31:07 Writing as a Form of Self-Discovery

36:06 Navigating Writing with Disabilities

49:59 The Journey of Training a Service Dog

Summary

In this conversation, the speakers delve into the intersection of romance writing and disability representation, particularly focusing on the experiences of chronically ill individuals. They discuss the impact of the pandemic on their lives, the process of writing romance novels that feature disabled characters, and the importance of authentic representation in literature. The conversation also touches on the viral success of one speaker's romance novel, the emotional journey of writing, and the practical challenges of writing with disabilities. Additionally, they explore the journey of training a service dog and how it has positively influenced their lives.

Takeaways

The pandemic led to significant life changes and new diagnoses.

Writing romance novels became a creative outlet during difficult times.

There is a need for authentic representation of disabled characters in romance.

Readers appreciate seeing themselves reflected in literature.

The success of a romance novel can be validating for writers.

Writing can be a form of self-discovery and healing.

Navigating the writing process with disabilities requires adaptation and support.

Service dogs can provide emotional and physical support for their owners.

Community and connection are vital for those with chronic illnesses.

The journey of self-publishing can be empowering despite challenges.

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Summary

In this conversation, Tessa Lynn Hodge discusses her journey from being a licensed clinical social worker to running for office in District 23. She emphasizes the importance of community engagement, healthcare reform, and the need for authenticity in politics. Tessa shares her experiences and insights on the challenges faced by her community, particularly in rural areas, and highlights the significance of mental health accessibility and telehealth. Her campaign focuses on putting people over party and advocating for grassroots funding to ensure real change.

Keywords

disability, politics, healthcare, community, mental health, grassroots, Tessa Lynn Hodge, election, advocacy, social work

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