I Am Not My Pain with Melissa Adams

Continuing our conversation with warrior, Jenny McPherson. Jenny has lived with chronic migraine disease for over forty years. During that time, she has spent tens of thousands of dollars even with insurance to treat her disease including Botox, many different medications, treatments, and even migraine surgery. Jenny spends her days juggling life as a contracts professional working for an aerospace company and mother while managing the before, during, or after of a migraine attack. Tune in to Part Two as Jenny discusses a treatment decision which she later regretted, balancing her life with chronic migraine disease including her mental health and why she decided to get involved in advocating for chronic migraine disease. To learn about  Alliance for Headache Disorders Advocacy, go to https://allianceforheadacheadvocacy.org/ and to learn about brain donation, go to https://hbtrc.mclean.harvard.edu/. 

Meet warrior, Jenny McPherson. Jenny has lived with chronic migraine disease for over forty years. During that time, she has spent tens of thousands of dollars even with insurance to treat her disease including Botox, many different medications, treatments, and even migraine surgery. Jenny spends her days juggling life as a contracts professional working for an aerospace company and mother while managing the before, during, or after of a migraine attack. Listen to Part One as Jenny shares her story, her experience with handling her expensive treatments, and the difficulties in deciding when to take her rescue medicine. To learn about Alliance for Headache Disorders Advocacy, go to https://allianceforheadacheadvocacy.org/ and to learn about brain donation, go to https://hbtrc.mclean.harvard.edu/.

Finishing our conversation with warrior, Aunia Kahn. Aunia’s journey with illness started at birth. Her symptoms were overlooked until Aunia began her search for answers at nineteen. Twenty years passed but with determination, Aunia was eventually diagnosed with Ehlers-Danlos Type 3, Dysautonomia, Mast Cell Disease, POTS, PTSD, Craniocervical Instability, Hiatal Hernia, Dysphagia, Vocal Cord Dysfunction, Neurodiversity, and Esophageal Dysmotility. Listen as in Part Three Aunia explains how she manages the fear of the unknown, how she became an accidental entrepreneur and how being visible with her disability has changed her career and life. Aunia is a remarkable artist and photographer and a proud and certified disabled business owner of a values-first web design SEO and digital marketing agency called Rise Visible. Rise Visible has been named Top-Ranking Woman-Owned Digital Agency by Clutch and has created the Rise Above Be Visible Podcast offering strategies and tips to help other small businesses and entrepreneurs. She is also the founder of Create for Healing and co-owner of Finch & Flare Treasures. To learn more about Aunia Kahn’s art or photography, go to ⁠https://auniakahn.com⁠, for Rise Visible or the Rise Above Be Visible Podcast, go to ⁠https://risevisible.com⁠, for Finch & Flare, go to ⁠https://finchandflare.com/⁠ and for Create for Healing, go to ⁠https://createforhealing.com/⁠. 

Continuing our conversation with warrior, Aunia Kahn. Aunia’s journey with illness started at birth. Her symptoms were overlooked until Aunia began her search for answers at nineteen. Twenty years passed but with determination, Aunia was eventually diagnosed with Ehlers-Danlos Type 3, Dysautonomia, Mast Cell Disease, POTS, PTSD, Craniocervical Instability, Hiatal Hernia, Dysphagia, Vocal Cord Dysfunction, Neurodiversity, and Esophageal Dysmotility. Tune in to Part Two as Aunia discusses her thoughts on toxic positivity, more on her process of acceptance and how she kept going to find her diagnoses. Aunia is a remarkable artist and photographer and a proud and certified disabled business owner of a values-first web design SEO and digital marketing agency called Rise Visible. Rise Visible has been named Top-Ranking Woman-Owned Digital Agency by Clutch and has created the Rise Above Be Visible Podcast offering strategies and tips to help other small businesses and entrepreneurs. She is also the founder of Create for Healing and co-owner of Finch & Flare Treasures. To learn more about Aunia Kahn’s art or photography, go to ⁠https://auniakahn.com⁠, for Rise Visible or the Rise Above Be Visible Podcast, go to ⁠https://risevisible.com⁠, for Finch & Flare, go to ⁠https://finchandflare.com/⁠ and for Create for Healing, go to ⁠https://createforhealing.com/⁠. 

Meet warrior, Aunia Kahn. Aunia’s journey with illness started at birth. Her symptoms were overlooked until Aunia began her search for answers at nineteen. Twenty years passed but with determination, Aunia was eventually diagnosed with Ehlers-Danlos Type 3, Dysautonomia, Mast Cell Disease, POTS, PTSD, Craniocervical Instability, Hiatal Hernia, Dysphagia, Vocal Cord Dysfunction, Neurodiversity, and Esophageal Dysmotility. Listen as in Part One Aunia shares her story and how acceptance of her conditions, her situation and herself has given her strength and fuels her passion for her art, her business and her life’s purpose. Aunia is a remarkable artist and photographer and a proud and certified disabled business owner of a values-first web design SEO and digital marketing agency called Rise Visible. Rise Visible has been named Top-Ranking Woman-Owned Digital Agency by Clutch and has created the Rise Above Be Visible Podcast offering strategies and tips to help other small businesses and entrepreneurs. She is also the founder of Create for Healing and co-owner of Finch & Flare Treasures. To learn more about Aunia Kahn’s art or photography, go to https://auniakahn.com, for Rise Visible or the Rise Above Be Visible Podcast, go to https://risevisible.com, for Finch & Flare, go to https://finchandflare.com/ and for Create for Healing, go to https://createforhealing.com/. 

Continuing our conversation with warrior, Tracy Marie. Tracy was born with a very rare, progressive life-long disease called Morquio Type A Syndrome. The syndrome causes cellular damage due to a missing enzyme. Even with all her health challenges and being misdiagnosed until 2017, Tracy forges ahead as a singer, songwriter, producer, and sound engineer who has recorded and produced numerous albums and travelled around the country performing with jazz legends like Stanley Jordan or the legendary drummer, Buddy Miles. Tracy knows firsthand the downfalls in implementing the criteria in the Americans with Disability Act and has taken tremendous strides to fight for herself and others with disabilities and rare conditions by advocating for ADA coordinators and by volunteering at her local government as co-chair of the ADA Transition Plan Task Force and at her local hospital as co-chair of the MetroHealth Patient Family Advisory Committee. As of 2021, Tracy has also been working with RAMPD, Recording Artists and Music Professionals with Disabilities, to make the music industry more accessible and to continue her advocacy work on a national level. In Part Two, tune in as Tracy dives into the challenges in getting her city ADA compliant and more about her important advocacy work. Tracy hopes to raise awareness on existing ADA compliancy issues and helps to share the steps we can all take to address them. To learn more about Tracy Marie, go to her website at https://tracymarie.com and go to https://archive.ada.gov/pcatoolkit/chap2toolkit.htm to find the ADA Best Practices Tool Kit for State and Local Governments. This step-by-step kit can help you begin the process of advocating for ADA compliancy in your area.   

Meet warrior, Tracy Marie. Tracy was born with a very rare, progressive life-long disease called Morquio Type A Syndrome. The syndrome causes cellular damage due to a missing enzyme. Even with all her health challenges and being misdiagnosed until 2017, Tracy forges ahead as a singer, songwriter, producer, and sound engineer who has recorded and produced numerous albums and travelled around the country performing with jazz legends like Stanley Jordan or the legendary drummer, Buddy Miles. Tracy knows firsthand the downfalls in implementing the criteria in the Americans with Disability Act and has taken tremendous strides to fight for herself and others with disabilities and rare conditions by advocating for ADA coordinators and by volunteering at her local government as co-chair of the ADA Transition Plan Task Force and at her local hospital as co-chair of the MetroHealth Patient Family Advisory Committee. As of 2021, Tracy has also been working with RAMPD, Recording Artists and Music Professionals with Disabilities, to make the music industry more accessible and to continue her advocacy work on a national level. In Part One, listen as Tracy shares her story and her opinion on the current ADA compliance issues.  To learn more about Tracy Marie, go to her website at https://tracymarie.com and go to https://archive.ada.gov/pcatoolkit/chap2toolkit.htm to find the ADA Best Practices Tool Kit for State and Local Governments. This step-by-step kit can help you begin the process of advocating for ADA compliancy in your area.   

Continuing our conversation with warrior, Jewel Dukes. After experiencing unexplained, rapid weight gain, extreme fatigue, mini-strokes and various other symptoms in 2021, Jewel began the difficult journey to find her proper diagnosis of Cushing’s Disease. This rare condition required pituitary surgery and caused her to become adrenally insufficient. Two major adrenal crises, several ER visits, and other health complications and comorbidities such as Lipedema, Arthritis, Sickle Cell Trait, and Spinal Stenosis soon followed. Tune in to Part Two as Jewel discusses her best treatment options, her suggestions for the recently diagnosed and her wish for others to understand about living with Cushing’s Disease and other rare conditions including the Rare Compassion Program. This program offers a unique opportunity for rare disease patients to share their experience with a medical student. To learn more about The Rare Compassion Program, go  https://globalgenes.org/participate/rare-compassion-program/ and to learn more about Jewel Dukes, go to her social media @thelipedemacushie on Instagram and @Jewel Dukes on Facebook.

Meet warrior, Jewel Dukes. After experiencing unexplained, rapid weight gain, extreme fatigue, mini-strokes and various other symptoms in 2021, Jewel began the difficult journey to find her proper diagnosis of Cushing’s Disease. This rare condition required pituitary surgery and caused her to become adrenally insufficient. Two major adrenal crises, several ER visits, and other health complications and comorbidities such as Lipedema, Arthritis, Sickle Cell Trait, and Spinal Stenosis soon followed. In Part One, listen as Jewel shares her health journey including her diagnosis discovery and all her comorbidities. Jewel wishes to raise awareness on Cushing’s Disease and all the facets of living with chronic illness through her social media, various podcasts and by participating in the Rare Compassion Program. The Rare Compassion Program by Global Genes offers the opportunity for rare disease patients to share their disease and experience with a medical student. To learn more about The Rare Compassion Program, go  https://globalgenes.org/participate/rare-compassion-program/ and to learn more about Jewel Dukes, go to her social media @thelipedemacushie on Instagram and @Jewel Dukes on Facebook. 

Meet warrior, Erin Paterson. Erin tested gene positive for Huntington’s Disease in her early thirties. After her life-changing diagnosis, Erin naturally began suffering from depression and also received the news she was infertile. Despite everything, she was determined to expand her family and to enjoy a meaningful life. Erin is now a proud mom, author, speaker, and international Huntington’s Disease advocate. Her work has appeared in two anthologies, and has been published on over ten different sites.  She wrote a monthly column for Huntington’s Disease News, and facilitated her new book including recruiting people to share their stories, coaching them through the writing process, finding sponsors, and publishing the book. She is a public speaker sharing her story both locally and internationally including at a recent conference for the Huntington’s Disease Youth Organization. Listen to Part Two as Erin shares her thoughts for others diagnosed with Huntington’s Disease, her recommendations to loved ones as well as medical staff caring for HD patients and about her new book and its impact on her life. To learn more about Erin Paterson, go to https://www.erinpaterson.com and find her memoir on Amazon at All Good Things: A Story About Genetic Testing, Infertility and One Woman’s Relentless Search for Happiness or her new book on Amazon at Huntington’s Disease Heroes: Inspiring Stories of Resilience from the HD Community.