I Am Not My Pain with Melissa Adams

Podcast host, Melissa Adams is signing off with gratitude from the I Am Not My Pain Podcast. Thanks to the encouragement and purpose from her sponsor, Heroes Circle, Melissa began the show wishing to bring living with chronic illness out of the shadows and into the light! After four seasons including 100 episodes with 56 chronic illness warriors from all over the world, this podcast has proved to be a profound, inspiring, and healing experience for her and hopefully, for her listeners as well. Tune in to her final episode as she reflects on this remarkable journey and shares her final thoughts as well as appreciation to past guests and the chronic illness community. She wishes to remind the chronically ill to never forget your voice and your life are valuable and important in the world and it is possible to find ways to live a fulfilled and meaningful life. YOU are so much more than your illness and pain. And as always to remember you are not alone, and you are not your pain.  

Continuing our conversation with warrior, Stephanie Venneri. Stephanie went in for a routine filling in 2021 and due to negligence, left with Trigeminal Neuralgia nicknamed the “Suicide Disease.” Excruciating pain and limited speaking time swiftly ended her over twenty year singing career, her livelihood and passion. Other diagnoses followed such as Hemicrania Continua, SUNA, Anesthesia Dolorosa and TMD/TMJ. Listen as in Part Two Stephanie discusses her feelings towards the dentist who caused her Trigeminal Neuralgia, how she copes living with multiple rare invisible illnesses and lastly, learning that it is okay to not to be okay. To learn more about Stephanie Venneri or her coaching services, go to www.stephvenneri.com or her Linktree at https://linktr.ee/stephvenneri.

Meet warrior, Stephanie Venneri. Stephanie went in for a routine filling in 2021 and due to negligence, left with Trigeminal Neuralgia nicknamed the “Suicide Disease.” Excruciating pain and limited speaking time swiftly ended her over twenty year singing career, her livelihood and passion. Other diagnoses followed such as Hemicrania Continua, SUNA, Anesthesia Dolorosa and TMD/TMJ. Tune in to Part One as Stephanie shares her remarkable story and how she manages gender and racial bias when seeking medical care. Stephanie is now a voice and life coach using her experience to help others manage the impact of chronic illness and other life’s challenges. To learn more about Stephanie Venneri or her coaching services, go to www.stephvenneri.com or her Linktree at https://linktr.ee/stephvenneri.   

Continuing our conversation with warrior, Michelle Milheiras. Michelle began experiencing vulva pain after a tailbone injury at only eight years old. Heavy periods, chronic UTI symptoms and yeast infections followed. Doctors dismissed and misdiagnosed her for over a decade, common for pelvic issues. Her pain and symptoms became so severe she had to leave her job. She was at last diagnosed accurately with Pelvic Floor Dysfunction, Endometriosis, Interstitial Cystitis, Lupus, Anxiety and Depression. Michelle now wishes to educate, uplift, and destigmatize these conditions by creating The Happy Pelvis website. Listen as in Part Two Michelle discusses interesting Endometriosis facts, her trauma from experiencing pelvic pain at a young age, and her tips for going to the doctor. To learn more about Michelle Milheiras including her blog, podcast, and valuable resources, go to https://thehappypelvis.ca or find her social media: Twitter @HappyPelvis, Facebook @TheHappyPelvis, and Instagram @the.happy.pelvis.

Meet warrior, Michelle Milheiras. Michelle began experiencing vulva pain after a tailbone injury at only eight years old. Heavy periods, chronic UTI symptoms and yeast infections followed. Doctors dismissed and misdiagnosed her for over a decade, common for pelvic issues. Her pain and symptoms became so severe she had to leave her job. She was at last diagnosed accurately with Pelvic Floor Dysfunction, Endometriosis, Interstitial Cystitis, Lupus, Anxiety and Depression. Michelle now wishes to educate, uplift, and destigmatize these conditions by creating The Happy Pelvis website. Tune in to Part One as Michelle shares her story, explains the anatomy, importance, and purpose of the pelvic floor and more. To learn more about Michelle Milheiras including her blog, podcast, and valuable resources, go to https://thehappypelvis.ca or find her social media: Twitter @HappyPelvis, Facebook @TheHappyPelvis, and Instagram @the.happy.pelvis.

Throwing it back to S1E8 with warrior, Leanne Million. Leanne’s identity was one of drama teacher, actress and all around go getter until she experienced a concussion in a car accident. Managing her physical pain and issues with her neurological function from post-concussion syndrome, Leanne had to leave her job and felt huge pieces of her identity slip away, a common occurrence in the lives of the chronically ill. Tune in as we hear Leanne reveal how she began the process of shifting her mindset on her identity and how she was able to recreate purpose and meaning in her life. If you are interested in Leanne’s services as a Certified Life, Relationship and Sexuality Coach, EFT or Reiki Practitioner, visit leannemillion.com or @leannemillion on Instagram.

Continuing our discussion with warrior, Kashinda Marche from S2E13. In 1995, Kashinda was a nineteen-year-old, new mother when she received the life-changing diagnosis of HIV. Reaching a breaking point with her mental health, Kashinda chose to focus on changing her mindset. Four neurosurgeries and many diagnoses followed throughout the years including Hidradenitis Suppurative, Autoimmune Disorder, Adrenal Insufficiency, Pituitary Adenoma, and Peripheral Neuropathy. Listen to Part Two as Kashinda shares how discovering of her authentic self fuels her passion to inspire, uplift, and empower African American girls and the chronic illness community as a published author, a certified personal development life coach that specializes in self-esteem strengthening, a TEDx speaker, and an Executive Director of the nonprofit, Kreative On Purpose. Kashinda believes health and life challenges don’t need to prevent one from living a fulfilled life. To learn more about Kashinda Marche, her services and her nonprofit, Kreative On Purpose, go to https://www.kreativeonpurpose.org. 

We are throwing back to S2E12 with warrior, Kashinda Marche. In 1995, Kashinda was a nineteen-year-old, new mother when she received the life-changing diagnosis of HIV. Reaching a breaking point with her mental health, Kashinda chose to focus on changing her mindset. Four neurosurgeries and many diagnoses followed throughout the years including Hidradenitis Suppurative, Autoimmune Disorder, Adrenal Insufficiency, Pituitary Adenoma, and Peripheral Neuropathy. Tune in to Part One as we hear Kashinda tell her remarkable story and explain the importance of mindset and of discovering her authentic self. This discovery fuels her passion to inspire, uplift, and empower African American girls and the chronic illness community as a published author, a certified personal development life coach that specializes in self-esteem strengthening, a TEDx speaker, and an Executive Director of the nonprofit, Kreative On Purpose. Kashinda believes health and life challenges don’t need to prevent one from living a fulfilled life. To learn more about Kashinda Marche, her services and her nonprofit, Kreative On Purpose, go to https://www.kreativeonpurpose.org. 

Continuing our discussion with warrior, Courtney, who along with uncommon conditions of POTS and Ehlers-Danlos Syndrome, struggles with worsening unexplained and life-altering symptoms. After experiencing extremely painful and concerning complaints for over a month and receiving little help from her family physician and other specialists, Courtney reluctantly attended her local emergency department only to be confronted with negligence and judgement. Tune in as Courtney talks about how her traumatic experience came to an end, and how she’s coping in its aftermath. 

We are throwing back to S2E7 with warrior, Courtney, who discussed the dismissiveness, gaslighting and judgements she faces on her odyssey to find respectful medical care. Courtney manages multiple rare conditions, which include POTS and Ehlers-Danlos Syndrome, but she also struggles with worsening unexplained symptoms, which are accumulating over time. Her uncommon, complex and ultimately poorly understood diagnosed conditions alone create their own significant difficulties when accessing emergency room care.  In combination with her new, seemingly unconnected, symptoms Courtney faces nurses and doctors who hyper-focus on certain complaints, such as pain, while completely dismissing or shrugging off others. Ultimately sending her home with no answers, and little more than temporary pain control.  Listen as Courtney recounts a recent horrific and nightmarish 21 hour-long emergency room visit, where her symptoms were not only dismissed, but where she was repeatedly denied basic compassionate care and how she’s coping after her ordeal. 

Continuing our conversation with warrior, Aston Martinez. Diagnosed in adulthood with ADHD and Autism, Aston knows the challenges of managing neurodivergence and her many chronic conditions. Tune in to Part Two as Aston discusses how you can support your neurodivergent loved one and how she handles her anxiety and past trauma when going to the doctor. Aston is diagnosed with ADHD, Autism, Ehlers-Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, Narcolepsy, Epilepsy, Chronic Activated Epstein Barr Virus, Myalgic Encephalomyelitis and Trigeminal Neuralgia. Aston continues to advocate as a proud member of the Rare Advocacy Movement and wishes to provide support and connection to the chronic illness community by developing a new app/website. To learn more about the Rare Advocacy Movement, go to https://www.rareadvocacymovement.com. To offer suggestions for Aston’s new chronic illness app/website, email notmypain@heroescircle.org.

Reintroducing warrior from S2E9, Aston Martinez. Diagnosed in adulthood with ADHD and Autism, Aston knows the challenges of managing neurodivergence and her many chronic conditions. Listen to Part One as she shares her story and her struggles from multitasking her neurodivergence with doctors, medications, and all her symptoms and emotions. Aston is diagnosed with ADHD, Autism, Ehlers-Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, Narcolepsy, Epilepsy, Chronic Activated Epstein Barr Virus, Myalgic Encephalomyelitis and Trigeminal Neuralgia. Aston continues to advocate as a proud member of the Rare Advocacy Movement and wishes to provide support and connection to the chronic illness community by developing a new app/website. To learn more about the Rare Advocacy Movement, go to https://www.rareadvocacymovement.com. To offer suggestions for Aston’s new chronic illness app/website, email notmypain@heroescircle.org.

Continuing our discussion from S2E15 with warrior, Samah Khan. Samah’s dream was to be a doctor. She was making her dream a reality when in her penultimate year of medical school, mysterious and chronic symptoms started. She graduated but her health issues forced her to give up practicing medicine, her passion in life. Samah spent the following years searching for her diagnoses, being dismissed by the medical profession, and managing her new reality. With persistence, Samah was finally diagnosed with psoriatic arthritis, fibromyalgia, and joint hypermobile syndrome or Ehlers-Danlos, but to this day, doctors are unresolved on her conditions, leading her to suffer from improper management. In Part Two, Samah shares her unique perspective on why doctors tend to dismiss patients with chronic illness especially functional disorders such as fibromyalgia and chronic fatigue syndrome and the importance of believing the patient. If you would like to become part of Samah Khan’s Facebook group, go to PICK SEBBIE BC SEBBIE PICKS U and send an invitation request. 

We are throwing back to S2E14 with warrior, Samah Khan. Samah’s dream was to be a doctor. She was making her dream a reality when in her penultimate year of medical school, mysterious and chronic symptoms started. She graduated but her health issues forced her to give up practicing medicine, her passion in life. Samah spent the following years searching for her diagnosis, being dismissed by the medical profession, and managing her new reality. With persistence, Samah was finally diagnosed with psoriatic arthritis, fibromyalgia, and joint hypermobile syndrome or Ehlers-Danlos, but to this day, doctors are unresolved on her conditions, leading her to suffer from improper management. Tune in as Samah reveals how redefining success for herself was instrumental in finding new meaning in her life again and allowing her to move forward as a medical editor and writer and founder of the Facebook group called PICK SEBBIE BC SEBBIE PICKS U where many chronically ill come for support. Samah also discusses the lack of proper training for doctors especially as it pertains to rare and chronic conditions. If you would like to become part of Samah Khan’s Facebook group, go to PICK SEBBIE BC SEBBIE PICKS U and send an invitation request. 

We are throwing back to S2E14 with warrior, Samah Khan. Samah’s dream was to be a doctor. She was making her dream a reality when in her penultimate year of medical school, mysterious and chronic symptoms started. She graduated but her health issues forced her to give up practicing medicine, her passion in life. Samah spent the following years searching for her diagnosis, being dismissed by the medical profession, and managing her new reality. With persistence, Samah was finally diagnosed with psoriatic arthritis, fibromyalgia, and joint hypermobile syndrome or Ehlers-Danlos, but to this day, doctors are unresolved on her conditions, leading her to suffer from improper management. Tune in as Samah reveals how redefining success for herself was instrumental in finding new meaning in her life again and allowing her to move forward as a medical editor and writer and founder of the Facebook group called PICK SEBBIE BC SEBBIE PICKS U where many chronically ill come for support. Samah also discusses the lack of proper training for doctors especially as it pertains to rare and chronic conditions. If you would like to become part of Samah Khan’s Facebook group, go to PICK SEBBIE BC SEBBIE PICKS U and send an invitation request. 

Continuing our conversation with warrior, Dr. Maureen Michele. Dr. Maureen is a military veteran, pediatrician, allergist/immunologist, certified life coach, and author. Above everything, she is a mom to three beautiful kids. Through navigating numerous chronic illness diagnoses for her three children, Dr. Maureen discovered important tools to bring peace and meaning to her life which she now shares as a certified life coach with other parents to support their journeys with their chronically ill children. In Part Two, Dr. Maureen will discuss how a parent can effectively advocate for their sick child at the doctor, how to manage the feeling of being overwhelmed and some personal pearls of wisdom that every parent and chronically ill person should hear! To learn about Dr. Maureen Michele including her services, book or Personal Pearls of Wisdom blog, go to website https://maureenmichelemd.com. To find her book on Amazon, Reclaiming Life: A Guide for Parents with Chronically Ill Children, go to https://amzn.to/3Hn6zrD. 

Meet warrior, Dr. Maureen Michele. Dr. Maureen is a military veteran, pediatrician, allergist/immunologist, certified life coach, and author. Above everything, she is a mom to three beautiful kids. Dr. Maureen was in her pediatric residency when her infant daughter was diagnosed with neuroblastoma. She was naturally consumed with the stress of getting her daughter healthy. Additional challenges arose years later when her daughter was diagnosed with Type 1 Diabetes and her other two children with mental health diagnoses. Her life became focused on navigating the health and well-being of her children. In Part One, tune in to Dr. Maureen as she shares her story and how through her experience, she gained valuable skills to create a calm, resilient, and meaningful life. Dr. Maureen now uplifts other parents in the same situation discover tools to support their journeys as a certified life coach. To learn about Dr. Maureen Michele including her services, book or Personal Pearls of Wisdom blog, go to her website https://maureenmichelemd.com. To find her book on Amazon, Reclaiming Life: A Guide for Parents with Chronically Ill Children, go to https://amzn.to/3Hn6zrD. 

Continuing our conversation with warrior, Dr. Diane Mueller. Dr. Mueller is a survivor of Lyme disease, mold illness, and prolonged IBS symptoms. Suffering for years, she set out on a journey to discover the root cause of her symptoms, earning two doctorates in holistic health care. She currently serves as a naturopathic doctor as well as doctor of acupuncture and oriental medicine. Dr. Mueller is nationally recognized as a Lyme disease, mold illness, and functional medicine expert. She is the founder of two alternative clinics called My Lyme Doc and My Libido Doc and the author of the best-selling book It's Not In Your Mind: Solutions and Strategies for Lyme Disease, Mold Illness, and Chronic Infections. In Part Two, listen as Dr. Mueller discusses mold illness, why Lyme disease and mold illness reoccur at such a high rate and the mind-body approach to aid in recovery and prevent recurrence. To learn about Dr. Diane Mueller or her clinics, go to https://mylymedoc.com or https://mylibidodoc.com. To claim a free copy of her best-selling book, go to https://mylymedoc.com/heal/ and only pay shipping and handling.

Meet warrior, Dr. Diane Mueller. Dr. Mueller is a survivor of Lyme disease, mold illness, and prolonged IBS symptoms. Suffering for years, she set out on a journey to discover the root cause of her symptoms, earning two doctorates in holistic health care. She currently serves as a naturopathic doctor as well as doctor of acupuncture and oriental medicine. Dr. Mueller is nationally recognized as a Lyme disease, mold illness, and functional medicine expert. She is the founder of two alternative clinics called My Lyme Doc and My Libido Doc and the author of the best-selling book It's Not In Your Mind: Solutions and Strategies for Lyme Disease, Mold Illness, and Chronic Infections. In Part One, tune in as Dr. Mueller shares her personal story to healing, the difficulties of diagnosing Lyme Disease and more on the condition. To learn about Dr. Diane Mueller or her clinics, go to https://mylymedoc.com or https://mylibidodoc.com. To claim a free copy of her best-selling book, go to https://mylymedoc.com/heal/ and only pay shipping and handling. 

Meet warrior, Laura Launderville. At 17, Laura developed symptoms Trigeminal Neuralgia (TN), a painful condition nicknamed the “suicide disease” but like most rare conditions, her diagnosis came much later at age 26. Laura is also diagnosed with the rare condition of Occipital Neuralgia (ON), Chronic Migraine Disease, Lichen Planopilaris (LPP), and IBS-M. Listen to Part Two as Laura dives into how Trigeminal Neuralgia affects her relationships, more about Occipital Neuralgia, how she copes with both very painful diseases and more. Laura supports others with TN and ON and raises awareness by writing on various platforms such as the Mighty and volunteering for the leading non-profit that brings awareness to rare facial pain diseases, The Facial Pain Association (FPA). She additionally serves as a board member for the FPA’s Young Patient Committee (YPC) whose primary focus is on rare pediatric facial pain conditions in young patients and adults under the age of 40 and volunteers for The Vashti Initiative, a non-profit that helps those who have experienced the trauma of religious and spiritual abuse. To learn more about Laura Launderville, go to her blog at https://lauriegirlthemedicalzebra.blogspot.com or Instagram at @themedicalzebrablog. To discover more about her experience and knowledge on TN, go to https://themighty.com/topic/trigeminal-neuralgia/my-journey-with-trigeminal-neuralgia/.

Meet warrior, Laura Launderville. At 17, Laura developed symptoms Trigeminal Neuralgia (TN), a painful condition nicknamed the “suicide disease” but like most rare conditions, her diagnosis came much later at age 26. Laura is also diagnosed with the rare conditions of Occipital Neuralgia (ON) and Lichen Planopilaris (LPP), Chronic Migraine Disease, and IBS-M. Tune in to Part One as Laura shares her incredible story as well as more information and perspective on the rare condition of Trigeminal Neuralgia. Laura supports others with TN and ON and raises awareness by writing on various platforms such as the Mighty and volunteering for the leading non-profit that brings awareness to rare facial pain diseases, The Facial Pain Association (FPA). She additionally serves as a board member for the FPA’s Young Patient Committee (YPC) whose primary focus is on rare pediatric facial pain conditions in young patients and adults under the age of 40 and volunteers for The Vashti Initiative, a non-profit that helps those who have experienced the trauma of religious and spiritual abuse. To learn more about Laura Launderville, go to her blog athttps://lauriegirlthemedicalzebra.blogspot.com or Instagram at @themedicalzebrablog. To discover more about her experience and knowledge on TN, go to https://themighty.com/topic/trigeminal-neuralgia/my-journey-with-trigeminal-neuralgia/.

Continuing our conversation with warrior, Tylia Flores. Tylia was born with Spastic Cerebral Palsy affecting her motility. Now twenty-eight years old, Tylia also suffers from chronic illness due to a left hip dislocation from Cerebral Palsy and surgeries to correct the issue. Tylia says transitioning to adult care was a struggle as well as simply managing her conditions and mental health along the way. In Part Two, Tylia discusses how she manages her mental health including a special way to help her mental health and keep her sense of humor while managing her cerebral palsy and painful hip dislocation. Despite all her challenges, Tylia found her passion for sharing her stories with others. Tylia is a disability activist, author of multiple fiction and nonfiction books including Perspective on cerebral palsy: Love’s beauty in spite of handicaps and A Disabled writer’s untold stories, and radio personality hosting The Stomping On CP Radio Show with DJ Ty. Tylia’s hope is to help others with disabilities realize their dreams. To learn more about Tylia Flores, her writing, her radio show and new projects, go to her website: www.tyliaflores.com. 

Meet warrior, Tylia Flores. Tylia was born with Spastic Cerebral Palsy affecting her motility. Now twenty-eight years old, Tylia also suffers from chronic illness due to a left hip dislocation from Cerebral Palsy and surgeries to correct the issue. Tylia says transitioning to adult care was a struggle as well as simply managing her conditions and mental health along the way. In Part One, Tylia shares her struggle transitioning from the pediatric medical world to adult and her suggestions for those going through the same situation. Despite all her challenges, Tylia found her passion for sharing her stories with others. Tylia is a disability activist, author of multiple fiction and nonfiction books including Perspective on cerebral palsy: Love’s beauty in spite of handicaps and A Disabled writer’s untold stories, and radio personality hosting The Stomping On CP Radio Show with DJ Ty. Tylia’s hope is to help others with disabilities realize their dreams. To learn more about Tylia Flores, her writing, her radio show and new projects, go to her website: www.tyliaflores.com.

Continuing our conversation with warrior, Irene S. Roth. Irene is a full-time writer, blogger, online teacher, and writing mentor coach. Irene has managed chronic pain from osteoarthritis, fibromyalgia, chronic migraine disease, and more for the past twenty-five years. After learning to manage her osteoarthritis, Irene began experiencing symptoms of fibromyalgia. In Part Two, Irene shares her suggestions on managing the condition as you age, her advice for the recently diagnosed and what she wishes others to understand about fibromyalgia. Irene wishes all chronic illness sufferers to find meaning in their lives and understand you can live a fulfilling life even when sick. To learn more about Irene S. Roth, go to her Smashwords e-books including Living Well with Fibromyalgia, Tips to Successful Chronic Pain Management, Educate Yourself on Your Chronic Illness or her blogs including Living Well with Arthritis and Fibromyalgia and I Am Not My Pain Podcast blog.

Reintroducing warrior from S3E5 and S3E6, Irene S. Roth. Irene is a full-time writer, blogger, online teacher, and writing mentor coach. Irene has managed chronic pain from osteoarthritis, fibromyalgia, chronic migraine disease, and more for the past twenty-five years. After learning to manage her osteoarthritis, Irene began experiencing symptoms of fibromyalgia. Tune in as Irene discusses her experience with fibromyalgia and the modalities which help her not only cope but live a full life with her conditions. To learn more about Irene S. Roth, go to her Smashwords e-books including Living Well with Fibromyalgia, Tips to Successful Chronic Pain Management, Educate Yourself on Your Chronic Illness or her blogs includingLiving Well with Arthritis and Fibromyalgia and I Am Not My Pain Podcast blog. 

Continuing our throwback to S1E21 with warrior, Samantha Moss. Listen in as Sam shares more about how she finds acceptance and embraces her new life as a patient advocate, blogger, podcaster, and author, with her biggest passion being her global Facebook support group called, Medical Musings with Friends; now 1,800 members strong. To learn more about Samantha Moss or her new book, you can visit her blog, "My Medical Musings"  https://mymedmusings.com/ or listen to her Podcast, "Medical Musings With Sam" https://anchor.fm/my-medical-musings. 

We are throwing back to S1E20 with warrior, Samantha Moss. Sam had a successful management career in financial services until 2014, when she had a severe bowel prolapse resulting in a permanent colostomy. Many diagnoses followed including a complex idiopathic Rare Bone Disease and rheumatoid arthritis. Sam constantly struggles with pathological broken bones and a future filled with unpredictability. Tune in to hear Sam’s amazing story of finding acceptance and embracing her new life as a patient advocate, blogger, podcaster, and author, with her biggest passion being her global Facebook support group called, Medical Musings with Friends. To learn more about Samantha Moss or her new book, you can visit her blog, "My Medical Musings"  https://mymedmusings.com/ or listen to her Podcast, "Medical Musings With Sam" https://anchor.fm/my-medical-musings. 

Continuing our conversation with warrior, Jenny Jones from S1E27. Jenny lives with two rare, chronic conditions called Familial Adenomatous Polyposis (FAP) and Short Bowel Syndrome and more recently was diagnosed with Post-Concussion Syndrome, Fibromyalgia, and Esophageal Dysmotility. Due to FAP, she underwent a total colectomy at age nine. Complications resulted in six additional surgeries and an eighth surgery to remove her gall bladder. Her genetics and additional factors led Jenny to decide not to have biological children. As fate would have it, she ended up becoming a very involved auntie to her twin nieces and stepmom to her bonus son. Listen to Part Two as Jenny discusses when and how she shares a health crisis with her bonus kid, how she addresses the challenges from her health limitations and being a stepmom and auntie, and more. To learn more about Jenny Jones, her blog, YouTube vlog, children’s book, Life’s a Polyp with Zeke and Katie or to support The National Organization for Rare Disorders Familial Adenomatous Polyposis Research Fund, go to her website at https://www.lifesapolyp.com. 

Let’s catch up with warrior, Jenny Jones from S1E27. Jenny lives with two rare, chronic conditions called Familial Adenomatous Polyposis (FAP) and Short Bowel Syndrome and more recently was diagnosed with Post-Concussion Syndrome, Fibromyalgia, and Esophageal Dysmotility. Due to FAP, she underwent a total colectomy at age nine. Complications resulted in six additional surgeries and an eighth surgery to remove her gall bladder. Her genetics and additional factors led Jenny to decide not to have biological children. As fate would have it, she ended up becoming a very involved auntie to her twin nieces and stepmom to her bonus son. Tune in to Part One as Jenny fills us in on her health journey, shares her decision on kids and how she manages her many conditions as a stepmom and auntie. To learn more about Jenny Jones, her blog, YouTube vlog, children’s book, Life’s a Polyp with Zeke and Katie or to support The National Organization for Rare Disorders Familial Adenomatous Polyposis Research Fund, go to her website at https://www.lifesapolyp.com.

Finishing 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. Listen to Part Three as Jenny shares how one can join the cause to fight for chronic migraine disease as well as find support and the benefit of advocacy in her life. 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/.  

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.

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, andinternational 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. Tune in to Part One as Erin dives into managing the aftermath of her diagnoses as well as being a caregiver for her father who is currently living with the debilitating symptoms of Huntington’s Disease. 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.

Meet warrior, Irene S. Roth. Irene is a full-time writer, blogger, online teacher, and writing mentor coach. Irene has managed chronic pain from osteoarthritis, fibromyalgia, chronic migraine disease, and more for the past twenty-five years. Barely functioning due to the debilitating pain, Irene was determined to not let the pain from her osteoarthritis defeat her. She educated herself and implemented a self-management plan allowing herself to not only function but thrive despite her pain. Through her writing, Irene teaches, encourages, and spreads her message of hope to the chronic pain community. In Part Two, listen as she shares her treatment suggestions and self-management tips for managing the ever-changing symptoms of arthritis and other chronic conditions. To learn more about Irene S. Roth, go to her Smashwords e-books including Living Well with Chronic Illness, The Emotionally Resilient Arthritis Sufferer, Tips to Successful Chronic Pain Management, How to Pace Yourself Despite Migraine Attacks or her blogs including https://livingwellwitharthritis.wordpress.com and the I Am Not My Pain Podcast blog at https://chronicpainwarriorsblog.ca.

Meet warrior, Irene S. Roth. Irene is a full-time writer, blogger, online teacher, and writing mentor coach. Irene has managed chronic pain from osteoarthritis, fibromyalgia, chronic migraine disease, and more for the past twenty-five years. Barely functioning due to the debilitating pain, Irene was determined to not let the pain from her osteoarthritis defeat her. She educated herself and implemented a self-management plan allowing herself to not only function but thrive despite her pain. Through her writing, Irene teaches, encourages, and spreads her message of hope to the chronic pain community. In Part One, tune in as she discusses how a pain in her toe began her incredible journey with osteoarthritis and its comorbidities. To learn more about Irene S. Roth, go to her Smashwords e-books including Living Well with Chronic Illness, The Emotionally Resilient Arthritis Sufferer, Tips to Successful Chronic Pain Management, How to Pace Yourself Despite Migraine Attacks or her blogs including https://livingwellwitharthritis.wordpress.com and the I Am Not My Pain Podcast blog at https://chronicpainwarriorsblog.ca.

Meet warrior, Marc Hoberman. Marc is a certified life coach, creator and host of the talk show: Life Stories with Marc Hoberman, motivational speaker/trainer, bestselling author, and study skills expert. At 16, Marc began suffering from epilepsy and later in his life from type 2 diabetes. Marc understands the struggles chronic illness can bring, especially at a young age. Listen as Marc shares how epilepsy presented an opportunity to connect with himself on a deep level, to learn valuable coping skills and above all, to utilize this knowledge to help others. Marc has authored and co-authored many books including his bestseller Opportunity In Disguise: How I Defeated Adversity sold online and in select bookstores and through his various passions strives to educate and uplift teens and parents to navigate life challenges such as illness, bullying, peer pressure, anxiety and depression. To learn more about Marc Hoberman, go to https://www.marchoberman.com/ or for his Grade Success educational tools, go to https://gradesuccess.com. 

Meet warrior, Larissa Martin. Larissa was born 26 weeks premature. She has Cerebral Palsy along with an intellectual disability and is an amputee requiring use of a wheelchair. Larissa is an activist, an advocate and an independent self-published author who has written Dear Anxiety: Letters from a Girl Who Cares and Stories from People who Suffer with Anxiety. She has been published and republished in numerous magazines and digital outlets such as The Mighty, Unwritten Magazine, Yahoo, and MSN. By sharing her life and perspective, Larissa hopes to expand people’s understanding of the true and complex nature of living life with disabilities. Tune in as Larissa explains the challenges, she faces day-to-day from simply opening a door to traveling, how she manages her mental health and the importance of listening and conversing with the disabled community. To learn more about Larissa Martin or her writing, go to https://www.larissaswriting.com.  

Meet warrior, Alex. Alex is transgender identifying as trans-masculine and non-binary. From a young age, Alex endured many chronic illnesses and disabilities. He/They was later diagnosed with Agenesis of the Corpus Callosum, a rare brain disorder where there is a partial or complete absence of an area of the brain that connects the two cerebral hemispheres. Alex also manages Dandy-Walker Syndrome, a congenital brain malformation involving the cerebellum and the fluid-filled spaces around it that coordinates movement, and additionally lives with blindness in the right eye, arthritis, chronic pain, non-verbal learning disorder, depression, anxiety, PTSD, OCD, autism, and more. Alex works hard to support the disabled community as a full-time Disability Resource Specialist, as well as strives to care for his/their own health. Alex not only faces tremendous obstacles living with multiple, rare conditions, but he/they faces another huge hurdle; Alex must navigate a healthcare system that doesn’t truly accommodate or comprehend his/their needs as a transgender person. Listen as Alex shares his/their story, the challenges of being transgender and chronically ill, and how he/they supports his/their health and well-being.   

Continuing our conversation with warrior, Lydia Joy Launderville. Lydia is a freelance writer specializing in health and lifestyle, a ghostwriter, a blogger, an advocate, and a full-time Reading Interventionist for elementary children. Diagnosed with Fibromyalgia, Migraine, Raynaud's syndrome, and a host of other conditions, Lydia entered the dating world while still discovering her diagnoses and how to manage her various symptoms. Through each relationship, Lydia has grown to understand her conditions and what she needs in her partner and for her health. Tune in to Part Two as Lydia discusses managing her health including doctor appts and flare ups while in a relationship, how she took care of herself during a breakup and how past and present romantic relationships have given her a deeper understanding of herself, her health and life. Lydia reminds all chronic illness warriors that you are so much more than your disease and are deserving of love. To learn more about Lydia Joy Launderville or her writing, go to https://lydiajoylaunderville.wordpress.com.  

Meet warrior, Lydia Joy Launderville. Lydia is a freelance writer specializing in health and lifestyle, a ghostwriter, a blogger, an advocate, and a full-time Reading Interventionist for elementary children. Diagnosed with Fibromyalgia, Migraine, Raynaud's syndrome, and a host of other conditions, Lydia entered the dating world while still discovering her diagnoses and how to manage her various symptoms. Through each relationship, Lydia has grown to understand her conditions and what she needs in her partner and for her health. Listen to Part One as Lydia shares her story as well as her dating history including how she manages the challenges of dating when chronically sick and how she supports her health above all. Lydia reminds all chronic illness warriors that you are so much more than your disease and are deserving of love. To learn more about Lydia Joy Launderville or her writing, go to  https://lydiajoylaunderville.wordpress.com. 

Meet warrior, Cedric. Cedric was a US Navy Airman until he suffered a severe back injury on duty leaving him in a wheelchair. With time and hard work, Cedric learned to walk again, but the injury resulted in degenerative back disease. Cedric now manages chronic pain from bulging discs in his lower back which has gradually affected his thoracic spine and neck. From childhood to his time in the Navy, Cedric was taught like most men that to show pain is to show weakness. Tune in as Cedric shares his remarkable story and how he battles his daily pain as well as the stigmas associated with being a man in chronic pain.   

Continuing our conversation with warrior, Carole Griffitts and her husband, FJ. Carole and FJ were happily married with two young sons when a severe, disabling back injury at work in 1978 began Carole’s 44-year journey with invisible disabilities. Carole was later diagnosed with post-polio syndrome in 1985, dystonia in 2005 and Sjogren’s syndrome in 2009. Her neuromuscular conditions interact with each other causing weakness, pain, spasms, and fatigability. Carole and FJ were forced to acclimate to their new roles. Listen as in Part Two this husband-and-wife duo share more on adapting to Carole’s ever evolving health challenges, their advice for the chronically ill and their significant other, and how they find hope and purpose especially through their compelling book. To learn more about Carole and FJ and their book, Sunbreaks in Unending Storms, go to https://sunbreaksbooks.com/.  To follow Carole’s journey, go to https://www.navigatingthestorms.com.