I am not my pain

with
Melissa Adams

Let's bring living with pain and illness out of the shadows and into the light!

I Am Not My Pain is a weekly podcast where real warriors living with pain and illness discuss their challenges and victories including treatments and coping strategies that they use to get through each day.

Every story matters.

About Melissa Adams

CROPPED_Melissa_Headshot_Not_My_Pain

Melissa Adams has lived with moderate to severe pain for over twenty-three years. At 19, she was diagnosed with Arnold Chiari Brain Malformation, a structural defect in her brain causing pressure headaches and limb weakness.  The three neurosurgeries to correct this issue triggered massive headaches and neck pain.  Forced to leave college behind and move back home with her parents, she began the task of navigating through the tricky healthcare system, never-ending judgements and trying to manage her daily, persistent pain.  With the failure of close to fifty conventional and holistic treatments, her hope soon turned into hopelessness.  Her life became the pain.

Twelve years into her pain journey, she was traveling to see her grandfather in Detroit, Michigan when her mom mentioned meeting the founder of the Heroes Circle, Rabbi Elimelech Goldberg or Rabbi G for short.  The Heroes Circle utilizes karate with breathing and meditation to ease the pain and trauma of very sick children while empowering them to heal physically, spiritually, and emotionally.  Melissa reluctantly agreed and wondered how meditation for kids could possibly touch her pain.  Rabbi G explained the process of how pain is processed in the brain and with chronic pain, your brain will amplify and repeat the pain message over and over again; always stuck in the "flight or fight" response.  The pain is 100% REAL!  But you can help to stop the pain message using the breath and visualization. 

Sheer desperation for any relief Melissa gave it try with no expectations.  Over time and with practice, Melissa discovered she could lower her pain just by meditating- no extra pills, just meditating!  Melissa started volunteering for the Heroes Circle teaching the children the Heroes Circle meditation techniques.  Working with these courageous heroes and continuing her meditation practices, she began to recognize that she was not her pain!  This revelation changed her life.  

Melissa isn't totally pain free, but the pain is more manageable, and she has her life back!  Now her purpose is clear- to connect the extraordinary children of the Heroes Circle and their meditation techniques to the pain community! 

The first step in this journey is to hear from individuals living with pain and illness and establish the issues they face day to day from finding a diagnosis, the negative impact on everyday life and relationships, the toll on mental health, etc.  Therefore, "I Am Not My Pain" podcast was created.  She wants to hear your story with pain and illness, your struggles, and what treatments if any helped you.  She is here to support your journey and remind you that you are NOT alone, and you are NOT your pain!  You are so much more!

Episodes

S1E1: But You Don’t Look Sick!

Meet warrior and podcast host, Melissa Adams. Living with an invisible condition for over twenty years, Melissa has been the recipient of often well-intended comments with the most common phrase being, “But you don’t look sick.” Listen as Melissa and her best friend, Sommer, discuss Melissa’s journey of chronic pain and how certain comments can create deep shame and guilt. Let’s remove the stigma one is lazy or weak if suffering from illness and pain and realize the strength and fortitude it takes to manage it.

S1E2: The Toll of Being a Medical Marvel

Meet warrior, Chris L’Amarca. Her countless autoimmune, endocrine, and genetic conditions such as Ehlers Danlos, POTS and Addison’s disease have truly transformed her into a medical marvel. Her conditions require her to self-isolate even from her own children unless wearing a respirator and will sadly take her life prematurely. Tune in to hear this inspirational warrior and advocate share how she manages her traumas, her conditions and her mental health. Visit her YouTube channel by searching Chris L’Amarca on YouTube.

S1E3: The Long Journey to a Diagnosis

Meet warrior, Aly. Aly woke up from a nap one day and the right side of her body was paralyzed for hours. She began the two-year journey to find her correct diagnosis of Functional Neurological Disorder or FND- a complex and mysterious condition causing Aly temporary paralysis, seizures, migraines and more. Listen as she shares her experience navigating the symptoms and doctors to finally reach her diagnosis.

S1E4: Navigating Chronic Illness and Our Mental Health – Part 1

Meet warrior, Danielle. Danielle is a licensed mental health therapist, a credentialed substance abuse counselor and manages a myriad of conditions such as fibromyalgia, Hashimoto’s, psoriatic arthritis, osteoarthritis, degenerative disc disease, tendonitis and more. Danielle realized quickly that navigating the world of chronic illness is not easy. She must handle not only her symptoms, but never-ending appointments, medications, their side effects, failed treatments, and even skeptical, disbelieving doctors and loved ones. Listen to her story and how she copes with her all the facets of living with her chronic conditions.

S1E5: Navigating Chronic Illness and Our Mental Health – Part 2

Continuing our discussion with warrior, Danielle. Tune in as this licensed mental health therapist and credentialed substance abuse counselor shares her professional recommendations for coping with chronic illness and pain.

S1E6: Invisible Illness, Real Pain

Meet warrior, Wendy Maxwell. Wendy is the epitome of the adage, never judge a book by its cover! She appears healthy on the surface, but she is in fact, disabled and suffers from many invisible illnesses such as chronic fatigue syndrome, fibromyalgia, Epstein Barr, hypothyroidism, and multiple chemical sensitivity. Listen to Wendy as she shares her story, the knowledge she has gained and how she discovered new purpose in her life as a teacher disability advocate and a mental health coach. Let’s redefine disability! If you are interested in Wendy’s services as a mental health coach, you can contact her by phone at 972-619-5254 or email at wmaxconsulting@gmail.com. To find her YouTube channel, search Life with Spirit Chronic Illness. 

S1E7: Acknowledge Our Interdependence- A Perspective on Caregiving

Meet warrior, Lisa Rutledge. Lisa is an author and owner of her own editing and publishing company and has spastic quadriplegic cerebral palsy, anxiety and obsessive-compulsive disorder. For her, caregivers are essential to her everyday life. Join us as Lisa discusses her experience with caregiving and the important lessons she has learned, including how to maintain her mental health and her advice to those needing care as well as for caregivers. “We need to acknowledge our interdependence. We all have strengths and limitations. We all need each other.” If you are interested in Lisa’s editing services or reading her published writing, please visit lisarutledgeauthor.com and to read her Christian blog, visit sittingwiththescared.com.

S1E8: The Identity Shift

Meet 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.

S1E9: The Stigma of Mental Illness- When Your Symptoms Are Dismissed

Meet warrior, Mindy. Mindy is among one and five Americans who experience mental illness. Living with varying levels of depression and anxiety for most of her life, Mindy knows her conditions and symptoms well. Therefore, when her widespread chronic pain started, she sought help right away only to have her pain be automatically dismissed as part of her mental illnesses. Listen to Mindy explain how her doctors’ dismissive behavior has affected her search for answers and her mental health.

S1E10: Surviving CRPS Through Peer Advocacy

Meet warrior, Melissa Wardlaw. Melissa is diagnosed with Complex Regional Pain Syndrome type 2 as a result of a non-paralyzing injury. Melissa learned early the value of being her own advocate. But she also realized the tremendous gap in support which is why this fierce warrior spends her time providing free peer counseling and advocating for CRPS and chronic illness awareness. Listen to Melissa share incredible insight into CRPS as well as offer valuable advice for living with chronic illness. If you are interested in online peer counseling with Melissa or if you live in the Metro Atlanta area and want to attend her in-person empowerment group for CRPS/RSD, chronic illness and pain, contact Melissa at crpsatl@gmail.com.

S1E11: Dismissiveness, Gaslighting and Judgments: The Fight for Respectful Care- Part One

Meet warrior, Courtney. Courtney manages multiple, rare conditions such as POTS and Ehlers Danlos as well as struggles with unexplained symptoms. Seeking treatment in her small area is far from easy as she continuously confronts dismissiveness, gaslighting and judgments from the medical community and even from her friends. Listen to Courtney share her heartbreaking story that is all too common for the chronically ill.

S1E12: Dismissiveness, Gaslighting and Judgments: The Fight for Respectful Care- Part Two

Resuming our discussion with warrior, Courtney as she continues to be bombarded with dismissiveness, gaslighting and judgements from her doctors and even from her closest friends.

S1E13: Working with a Chronic Illness

Meet warrior, Jae Cobb. Diagnosed with lupus, fibromyalgia, CRPS and several other conditions, Jae juggles a lot of symptoms while working a full-time job. Listen as Jae discusses how she manages working with her chronic conditions and how finding her passion motivates her to overcome her pain daily. Follow Jae’s journey on Facebook and Instagram @chronicallyillandstrong or find her blog on Tumblr at https://simplelittlebrowngirljae.tumblr.com/.

S1E14: Breaking the Misconceptions of Diabetes- Advocating for a Better Tomorrow

Meet warrior, CJ. CJ manages latent autoimmune diabetes. Highly focused on her diet, CJ developed an eating disorder and became malnourished. Education and support from the diabetes community opened the door for CJ to seek help for her eating disorder, break her own misconceptions and fears about diabetes, and fuel her passion to advocate for herself and others. Tune in to hear CJ’s journey and how her advocacy is breaking down barriers for a better tomorrow! Follow CJ’s journey and advocacy work @thegeneticdiabeticblog on Instagram and The Genetic Diabetic on Facebook. Her children’s book, My Diabetic Mama, is for sale now on Amazon.

S1E15: Parenting while Chronically Ill

Meet warrior, Kris McElroy. Kris is a 37-year-old autistic biracial black transgender man with multiple disabilities and chronic illnesses such as rheumatoid arthritis and Complex Hereditary Spastic Paraplegia. Kris is a passionate artist, advocate, freelance writer, and most importantly, a dad to a beautiful 2-year-old-daughter. Kris will be the first to say he was both afraid and elated to be a dad. Listen to Kris explain how he manages parenting while chronically sick including the ability to be flexible, dad guilt and the importance of communication with his wife. To learn more about Kris, go to his website at https://sites.google.com/view/krismcelroysite/home.

S1E16: Self-Management Tools for Chronic Illness- Part One

Meet warrior, Andrea (Andy) Kottmeier Moar. Andy is diagnosed with Cushing’s disease, kidney disease, neuropathy, type 1 diabetes, vitiligo, and more. Andy taught a six-week chronic disease self-management course called, “Better Choices, Better Health” in Alberta, Canada. Tune in to Andy share her story and what important self-management tools we can use when living day-to-day with chronic conditions.  

S1E17: Self-Management Tools for Chronic Illness- Part Two

Continuing our conversation with warrior, Andy Kottmeier Moar as she offers more self-management tools for the chronically ill.

S1E18: Brace for Impact- Chronic Illness Collides with Everyday Life

Meet warrior, Jen. Jen suffers from Functional Neurological Disorder causing severe dizziness, tiredness, migraines, and cognitive issues. Once a tax consultant, Jen is now disabled and feels the impact of her condition in all areas of her life. Listen as Jen explains how she adjusts her everyday life from cooking to running errands around her condition and her small town and how she finds humor where she can.

S1E19: Being a Chronically Ill Woman in Today’s Healthcare System

Meet warrior, Saramax Guttman. Saramax has been diagnosed with celiac disease, epilepsy, psoriatic arthritis and lupus and has suffered with mental illnesses such as OCD since childhood. Saramax knows firsthand how the healthcare system can view and treat you differently as a woman with a chronic illness. Tune in as she shares her experience and how she promotes awareness on living with chronic illness and supports adults with developmental disabilities as an employment counselor. Read Saramax’s article mentioned in the podcast here: https://themighty.com/2022/05/working-full-time-with-chronic-illness-and-making-choices/. This interview was recorded prior to the overturn of Roe vs Wade.

S1E20: Finding Acceptance and New Purpose with Chronic Illness- Part One

Meet 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; 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.

S1E21: Finding Acceptance and New Purpose with Chronic Illness- Part Two

Continuing our conversation 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.

S1E22: Managing Chronic Pain in Relationships with Loved Ones

Meet warrior Kelly Douglas. Kelly is a mental health and disability advocate, a Contributor Editor for the Mighty and a Senior Editor for Unwritten. Kelly has lived with cerebral palsy since birth and has also experienced intermittent chronic pain for just over a decade. Managing her disability and her pain creates many challenges in her life — especially with her mental health. Listen as Kelly shares her story and reveals how she manages her mental health while trying to explain her pain to her healthy loved ones. To learn more about Kelly Douglas, you can follow her on Instagram @kellychristine333 or on Twitter @kellywrites333.

S1E23: Growing Up with Chronic Illness

Meet warrior, Elianna. After fracturing her growth plate in the fifth grade, Elianna was diagnosed with CRPS, fibromyalgia and Oppositional Defiant Disorder and so began her young life living with illness and pain. More diagnoses followed including chronic fatigue syndrome, migraine, chronic hip bursitis and a rare digestive issue called “dumping syndrome.” Tune in as Elianna shares how she managed her illnesses and the medical system at a young age and how she attributes living with chronic illness as a child to being able to cope with the pain she faces today.

S1E24: Navigating Chronic Illness in a World That Wasn’t Made for Us

Meet warrior, Kat Harrison. Kat is a fierce advocate and writer who lives with chronic, daily migraine, bilateral vestibular loss, oscillopsia, chronic ear disease and a rare headache condition called SUNCT Syndrome. Tune in as Kat shines a realistic light on the everyday decisions the chronically ill face. She’ll also share how to increase accessibility and inclusion in the workplace, home and beyond. Kat is the community content producer at the Mighty and the author of the award-winning children’s book Surgery on Sunday, the newly released children’s book, Migraine and Mia and numerous articles for magazines such as Real Simple and digital outlets such as MSN. To learn more about Kat and her writing, go to her website https://www.katwritesforyou.com/.  

S1E25: The Burden of Losing Our Independence when Chronically Ill

Meet warrior, Carolanne Monteleone. Carolanne was a bright-eyed 21-year-old woman when chronic illness struck her life. Carolanne quickly lost huge pieces of her independence having to move back in with her parents and depending on them for help with ER visits, doctor’s appointments, medications, showers and her feeding tube. Eventually diagnosed with many chronic conditions such as gastroparesis, dysautonomia, polycystic ovary syndrome, bile reflux, and chronic fatigue syndrome, Carolanne has dealt with many ups and downs in her health and the ability to care for herself. Listen as Carolanne reveals the impact of losing her independence and how she manages the loss, her mental health and life by writing, advocating, and leaning on her loved ones. To read her published articles, blog and more, go to her website at https://aheartforhumanity.wordpress.com/. You can also follow Carolanne on Instagram @carolannemaria.

S1E26: The Difficulties with Having No Support

Meet warrior, Kale Sastre. Kale is an anthropologist and avid adventurer who grew up being sick a lot, but her family wouldn’t believe her or take her pain seriously. Kale learned to be very independent hiding her symptoms until they worsened. She was later diagnosed with migraine, spine issues, fibromyalgia, depression, anxiety and PTSD, resulting in severe pain, exhaustion, and balance issues. Listen as Kale shares her story, the hardships of managing her chronic conditions essentially by herself and the outlet writing has provided. To read her articles on chronic illness or her published works of fiction, go to her website at https://ksastre.wordpress.com.

S1E27: Perseverance when Living with Chronic Conditions

Meet warrior, Jenny Jones. Jenny believes persistence is key to living with all the aspects of her two rare, chronic conditions called Familial Adenomatous Polyposis and Short Bowel Syndrome. Diagnosed with FAP as a child, she underwent a total colectomy at age nine. Complications led to six additional surgeries and an eighth surgery to remove her gall bladder. With encouragement from a community FAP page, Jenny started a blog in 2012 called Life’s a Polyp and began openly sharing all aspects of living with her rare conditions. The blog lead her to start a YouTube vlog, write a children’s book called Life’s a Polyp with Zeke and Katie and become an important advocate for her disease. Tune in as Jenny explains how perseverance helped her find the best medical care, be proud of her scars and find her purpose in life. To learn more about Jenny or to support The National Organization for Rare Disorders Familial Adenomatous Polyposis Research Fund, go to her website at https://www.lifesapolyp.com.

S1E28: Playing Doctor Roulette

Meet warrior, Nicole. Nicole is a 30-year-old teacher managing multiple diagnoses including fibromyalgia, arthritis, chronic migraine, MCTD and more. Nicole has been misdiagnosed, judged, and dismissed by doctors as she constantly struggles to find the right care covered by her health insurance. Listen as Nicole shares her experience with doctors, good and bad, and how those experiences affect her mental health. Doctors who listen make all the difference. To help Nicole and her team at One Day At A Time, with their fundraising efforts for the American Foundation for Suicide Prevention, go to https://bit.ly/3dwLkbc.

S1E29: Breaking the Suffering Cycle- Part One

Meet warrior, Isaac Kakone. In August 2019, Isaac was in a horrible motorcycle accident. The accident ripped all the nerves connecting his left arm to his brain, causing severe chronic nerve pain and essentially a dead left arm. Isaac’s experience with pain and suffering thrust him into a very dark place and into addiction as a way to cope. Realizing he could not live this way anymore, he began educating himself on the brain’s response to pain and reflected on his behavior and choices, discovering his true core values. Tune in as Isaac shares how he faced his pain and addiction and learned to find a new beginning as a father, husband, motivational speaker and overall human being. Isaac believes his experience is “an opportunity to help others survive and thrive despite the chronic pain.” To learn more about Isaac or to have him speak at your next event, you can go to his website https://www.recoverythroughvalues.com.

S1E30: Breaking the Suffering Cycle- Part Two

Continuing our discussion with warrior, Isaac Kakone. After a horrific motorcycle accident in 2019 ripped all the nerves connecting his left arm to his brain, Isaac’s severe nerve pain pushed him into a constant cycle of pain, suffering and addiction. Listen as Isaac explains how finding his core values allowed him to not only live with his pain but find purpose and thrive despite it. To learn more about Isaac or to have him speak at your next event, you can go to his website https://www.recoverythroughvalues.com.

S2E1: Letting Go and Accepting Uncertainty When Living with Chronic Illness- Part One

Meet warrior, Kimi. Kimi is a young adult living and coping with hydrocephalus, slit ventricle syndrome and chronic pain syndrome from her past forty neurosurgeries. At seventeen, Kimi suffered a hemorrhagic stroke due to a failed 3rd Ventriculostomy which took away her ability to walk, talk or do anything with the right side of her body. Kimi slowly fought her way back and discovered her new passion for medical research. She knows that at any time her shunt could break, resulting in more surgery, pain and upheaval in her life. Listen as Kimi shares her incredible story and how she was able to let go of her past and accept her present and the uncertainty of her future. If you are interested in Kimi’s blog, go to https://blessingsinhydro.blogspot.com/

S2E2: Letting Go and Accepting Uncertainty When Living with Chronic Illness- Part Two

Continuing our discussion with warrior, Kimi. Kimi is a young adult living and coping with hydrocephalus, slit ventricle syndrome and chronic pain syndrome from her past forty neurosurgeries. At any moment, Kimi’s shunt in her brain could break, resulting in surgery, pain and upheaval in her life. Tune in to hear Kimi explain how she has been able to accept her present and the uncertainty of her future. If you are interested in Kimi’s blog, go to https://blessingsinhydro.blogspot.com/

S2E3: The Journey to Identify as Disabled- Part One

Meet warrior, Carly Fox. Carly is a 20-year-old disabled student living with psoriatic arthritis, fibromyalgia, mental illnesses of generalized anxiety disorder and post-traumatic stress disorder, and ADHD. Identifying as disabled was a complex and personal journey where Carly challenged her own preconceived notions on disability to address her internalized ableism and find a new understanding of what it really means to be ‘disabled’. Tune in to Carly’s story as she shares how embracing her disability sparked her passion for advocacy and opened her up to new opportunities, such as with the National Educational Association of Disabled Students and the Council of Canadians with Disabilities as their International Chair. Carly is also an international development student hoping to pursue a career in policymaking and diplomacy to strengthen the position of disability rights on the international agenda and to reduce global inequality. To learn more about Carly Fox, her blog or her advocacy services, go to https://carlyfoxdisabilityadvocacy.ca or find her on socials @ItsCarlyFox.

S2E4: The Journey to Identify as Disabled- Part Two

Continuing our discussion with warrior, Carly Fox. Carly is a 20-year-old disabled student living with psoriatic arthritis, fibromyalgia, mental illnesses of generalized anxiety disorder and post-traumatic stress disorder, and ADHD. Listen to Carly as she discusses coping with disability, her experience with autoimmune medications, the connection between her PTSD, anxiety and pain, and how advocating for her disability has opened her up to new opportunities and new purpose such as with the National Educational Association of Disabled Students and the Council of Canadians with Disabilities as their International Chair. Carly is also an international development student hoping to pursue a career in policymaking and diplomacy to strengthen the position of disability rights on the international agenda and to reduce global inequality. To learn more about Carly Fox, her blog or her advocacy services, go to https://carlyfoxdisabilityadvocacy.ca or find her on socials @ItsCarlyFox.

S2E5: Shining Light on Stigmas for Chronically Ill – Part One

Meet warrior, Tracy Riggs Frontz. Tracy is a professional, award-winning photographer and writer, mom, and newly married. As a child and teen, Tracy experienced many health issues such as reactive hypoglycemia, anxiety, depression, Mitral Valve Prolapse, and dysautonomia. In adulthood, she began to suffer with polycystic ovarian syndrome, restless leg syndrome, sleep apnea, fibromyalgia, bipolar type II, Sjogren’s syndrome, type 2 diabetes, complex regional pain syndrome, hypermobility syndrome, major obesity, acid reflux, serotonin toxicity syndrome, osteoarthritis, PTSD, and high blood pressure. Tracy understands living with chronic illness and the stigmas that inevitably follow. She even created a blog to raise awareness called Spotlight on Stigma. Listen as Tracy discusses the positive or negative impact of these chronic illness stigmas and phrases. To learn more about Tracy including her writing or photography, you can visit www.NovelPhotos.com. To access her blog, go to her website and click on the Spotlight on Stigma header.

S2E6: Shining Light on Stigmas for Chronically Ill – Part Two

Continuing our discussion with warrior, Tracy Riggs Frontz. Tracy is a professional, award-winning photographer and writer, mom, and newly married. From childhood to adulthood, Tracy manages a myriad of diagnoses from bipolar type II, dysautonomia, complex regional pain syndrome, and more. Tune in as Tracy shares how certain comments impacts her both negatively and positively. If you ever wondered what to say to the chronically ill, listen in! To learn more about Tracy including her writing or photography, you can visit www.NovelPhotos.com. To access her blog, go to her website and click on the Spotlight on Stigma header.

S2E7: A Nightmare Visit at the ER – Courtney’s Story – Part One

Let’s catch up with warrior Courtney, from Episodes S1E11 and S1E12, 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.

S2E8: A Nightmare Visit at the ER – Courtney’s Story – Part Two

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.

S2E9: The Harm Caused by Bias in Healthcare Today

Meet warrior, Aston Martinez. Aston is diagnosed with Ehlers-Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, Narcolepsy, Chronic Activated Epstein Barr Virus, Myalgic Encephalomyelitis and Trigeminal Neuralgia. Aston understands biases are part of being human. However, when doctors and medical staff fail to recognize and address their personal biases, they can cause irrevocable physical and mental harm to their patients. Listen as Aston shares her experience with biases in healthcare, their impact on her medical care and mental health, and how these experiences have fueled her passion to raise awareness on living with rare conditions. To learn more about Aston Martinez or the organization she works for called Habit Nest, go to www.habitnest.com

S2E10: Support Your Health- The Value of Self-Advocacy When Chronically Ill- Part One

Meet warrior, Allyson Finn. Allyson is a chronic illness advocate, substitute teacher, actress, and business consultant who has spent the last decade unraveling different health issues caused by a hypermobile form of Ehlers-Danlos Syndrome. Recently, Allyson has been experiencing symptoms including severe gastro issues possibly due to POTS, a comorbidity of Ehlers-Danlos. A true veteran of managing chronic illness, Allyson has developed valuable self-advocacy skills in order to best support her physical and mental health. Listen as Allyson shares her thoughts on self-advocating when managing new or difficult doctors and searching for the best medical team and solutions for you. She firmly believes you are the expert on your own body!

S2E11: Support Your Health- The Value of Self-Advocacy When Chronically Ill- Part Two

Continuing our conversation with warrior, Allyson Finn. Allyson is a chronic illness advocate, substitute teacher, actress, and business consultant who has spent the last decade unraveling different health issues caused by a hypermobile form of Ehlers-Danlos Syndrome. Recently, Allyson has been experiencing symptoms including severe gastro issues possibly due to POTS, a comorbidity of Ehlers-Danlos. A true veteran of managing chronic illness, Allyson has developed valuable self-advocacy skills in order to best support her physical and mental health. Tune in as Allyson shares more self-advocating advice including how she managed her medical treatment while experiencing new symptoms.

S2E12: Discovering Your Authentic Self while Chronically Sick- Part One

Meet 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 choose 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.

S2E13: Discovering Your Authentic Self while Chronically Sick- Part Two

Continuing our discussion 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 choose 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.

S2E14: Redefining Success when Chronically Ill- Part One

Meet 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 allowed 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.

S2E15: Redefining Success when Chronically Ill- Part Two

Continuing our discussion 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 One, Samah reveals how she redefined success for herself. 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.

S2E16: Finding Your Voice and Identity when Growing Up with a Rare Bone Disorder – Part One 

Meet warrior, Marlena Chertock, who was born with spondyloepiphyseal dysplasia, a rare bone disorder and form of dwarfism resulting in short stature, chronic pain, arthritis, scoliosis, and more. Marlena grew up knowing she was different from her peers. Tune in as Marlena shares how she navigated those differences, bullying, chronic pain, and medical interventions to find her identity, advocate for important causes, and become a published author. Marlena has published two works of poetry called Crumb-sized: Poemsand On that one-way trip to Mars. She works as a Communications Manager, Water at the World Resources Institute, sharing research and data that helps companies, cities, and countries understand water risks and invest in solutions for a water-secure future. She also serves on the Board of Split This Rock, a nonprofit that cultivates poetry that bears witness to injustice and provokes social change, and was previously the Co-Chair of OutWrite, Washington, D.C.’s annual LGBTQ literary festival. Marlena utilizes her life experience to shine a light on topics such as chronic pain, disability, sexuality, and science fiction. To learn about Marlena Chertock, go to marlenachertock.com

S2E17: Finding Your Voice and Identity when Growing Up with a Rare Bone Disorder – Part Two 

Continuing our discussion with warrior, Marlena Chertock, born with spondyloepiphyseal dysplasia, a rare bone disorder and form of dwarfism resulting in short stature, chronic pain, arthritis, scoliosis, and more. In Part Two, listen as Marlena describes what it was like to grow up with her condition and to begin to recognize the resilience of her body. She shares her journey to identifying as disabled and her thoughts on invisible disabilities in our society. Marlena has published two works of poetry called Crumb-sized: Poemsand On that one-way trip to Mars. She works as a Communications Manager, Water at the World Resources Institute, sharing research and data that helps companies, cities, and countries understand water risks and invest in solutions for a water-secure future. She also serves on the Board of Split This Rock, a nonprofit that cultivates poetry that bears witness to injustice and provokes social change, and was previously the Co-Chair of OutWrite, Washington, D.C.’s annual LGBTQ literary festival. Marlena utilizes her life experience to showcase the diversity of disability and chronic pain, highlight the importance of including disabled people in climate change planning, and imagine all bodies in the future through science fiction, speculative fiction, and crip lit (crippled literature). To learn about Marlena Chertock, go to marlenachertock.com

S2E18: Handling Unpredictability with Rare Conditions– Part One 

Meet warrior, Tessa Koller. Tessa manages a rare genetic syndrome called 22Q11.2 Deletion Syndrome which can cause heart defects, poor immune function and more. She has endured several near-death experiences including one due to long haul Covid as well as many surgeries resulting in chronic pain. The diagnoses of Fibromyalgia and Behcet’s Syndrome soon followed. Tessa always looks for the lessons each experience and condition has taught her. Through her art and advocacy, she keeps moving forward, supports others and is able to find some peace amidst the chaos. Tune in to Part One as Tessa shares her remarkable story living with her rare conditions as well as some of her near-death experiences and how she handles the unpredictability of it all. To learn about Tessa including her art and blog or to subscribe to her newsletter, go to https://www.tessakollerart.com/

S2E19: Handling Unpredictability with Rare Conditions- Part Two 

Continuing our discussion with warrior, Tessa Koller. Tessa manages a rare genetic syndrome called 22Q11.2 Deletion Syndrome which can cause heart defects, poor immune function and more. She has endured several near-death experiences including one due to long haul Covid as well as many surgeries resulting in chronic pain. The diagnoses of Fibromyalgia and Behcet’s Syndrome soon followed. Tessa always looks for the lessons each experience and condition has taught her. Through her art and advocacy, she keeps moving forward, supports others and is able to find some peace amidst the chaos. Listen as in Part Two Tessa explains how she handles the unpredictability of it all and offers her tips to others living with chronic illness. To learn about Tessa including her art and blog or to subscribe to her newsletter, go to https://www.tessakollerart.com/.  

S2E20: Carrying the Burden of Guilt When Chronically Ill- Part One 

Meet warrior, Kathleen (Kath) Nicholls. Kath is a published author, a freelance illustrator and award-winning blogger and advocate living in Scotland. At the age of 21, she began suffering with pain and having limited use of her legs followed by crippling stomach pain. She was later diagnosed with arthritis and Crohn’s Disease which subsequently required surgery. Kath now manages her conditions through a variety of treatments and medications and has felt the weight of carrying the feelings of guilt and of being a burden due to her chronic conditions. Tune in as Kath dives into these feelings and how she copes with them and her health challenges. To learn more about Kathleen Nicholls including her award-winning blog and books, go to her website at https://www.kathfantastic.com or you can purchase her books on Amazon at Go Your Crohn Way: A Gutsy Guide to Living with Crohn’s and My Flare Lady: a handbook for today’s (diseased) dame

S2E21: Carrying the Burden of Guilt When Chronically Ill- Part Two 

Continuing our discussion with warrior, Kathleen (Kath) Nicholls. Kath is a published author, a freelance illustrator and award-winning blogger and advocate living in Scotland. At the age of 21, she began suffering with pain and having limited use of her legs followed by crippling stomach pain. She was later diagnosed with arthritis and Crohn’s Disease which subsequently required surgery. Kath now manages her conditions through a variety of treatments and medications and has felt the weight of carrying the feelings of guilt and of being a burden due to her chronic conditions. In Part Two, listen as Kath shares how she responds to loved one’s suggestions as well as her recommendations on how to support your chronically ill loved one without adding to the feeling of guilt. To learn more about Kathleen Nicholls including her award-winning blog and books, go to her website at https://www.kathfantastic.com or you can purchase her books on Amazon at Go Your Crohn Way: A Gutsy Guide to Living with Crohn’s and My Flare Lady: a handbook for today’s (diseased) dame

S2E22: Life after Chronic Illness 

Meet warrior, Katiuscia Maria. Katiuscia was diagnosed with lupus nephritis at only thirteen. The lupus attacked her kidneys requiring a myriad of medications and chemotherapies. She enjoyed a few years of milder symptoms until 2009 when she became very ill. When all treatments failed to help, she decided to change her lifestyle and her lupus went into remission. Katiuscia is still immune suppressed and must always be mindful of her health. She also manages migraine, arthritis, and some other symptoms; however, her lupus has been in remission for almost a decade. Listen as Katiuscia manages life after lupus including the fear of her symptoms returning and the sadness from missing out on previous life events. Katiuscia actively chooses to see good in every situation and has come to appreciate her decades long struggle with lupus as her experience has made her the strong woman she is today. To learn more about Katiuscia Maria and her blog, go to https://www.lupuslifebalance.com or find her on social media at @katiuscia_maria.  

S2E23: So Much More Than a Headache- Part One  

Meet warrior, Kathleen O’Shea. Kathy is an award-winning author, a regular blogger for psychologytoday.com, a professor of English and a migraine sufferer for over forty-three years. What initially began as writing about her own migraine experience transitioned into more as she researched literature on migraine. Her research and expertise combine masterfully to create her award-winning book, So Much More than a Headache: Understanding Migraine through Literature. Tune in as Kathy shares her story and how literature improves our understanding of the complexity of migraine. Finalist in Health category: 2021 Best Book Award and first-place winner in Health category for Firebird, So Much More than a Headache: Understanding Migraine through Literature is currently sold on Amazon and select bookstores.  

S2E24: So Much More Than a Headache- Part Two 

Continuing our discussion with warrior, Kathleen O’Shea. Kathy is an award-winning author, a regular blogger for psychologytoday.com, a professor of English and a migraine sufferer for over forty-three years. Her research and expertise combine masterfully to create her award-winning book, So Much More than a Headache: Understanding Migraine through Literature. Listen to Part Two Kathy explains why migraine is a full-time, life-long condition along with sharing significant migraine literature. Finalist in Health category: 2021 Best Book Award and first-place winner in Health category for Firebird, So Much More than a Headache: Understanding Migraine through Literature is currently sold on Amazon and select bookstores.   

S2E25: The Full Impact of Migraine- Part One    

Meet warrior, Camellia Phillips. Camellia has been suffering from chronic migraine for the past eighteen years as well as mild ulcerative colitis for the past decade. Camellia holds an MFA in creative writing from The New School and her essays and short stories have been published in literary magazines, children’s magazines, and online outlets like The Mighty. She is a longtime writer and leader with social justice organizations and was honored as a 2019 Women in Power Fellow in New York City. Until recently, Camellia did not publicly discuss the severity her conditions fearing the negative impact on her career as well as people’s perceptions of her, but months of visible mobility issues compelled Camellia to open up about her conditions including through her blog. Tune in to Part One as Camellia explains how migraine affects her body and every facet of her life and how the work world is not made for the chronically ill. To learn more about Camellia Phillips go to her website at www.camelliawrites.com. You can also learn more about her freelance copywriting and SEO strategy business at www.evergreenwords.org

S2E26: The Full Impact of Migraine- Part Two  

Continuing our conversation with warrior, Camellia Phillips. Camellia has been suffering from chronic migraine for the past eighteen years as well as mild ulcerative colitis for the past decade. Camellia holds an MFA in creative writing from The New School and her essays and short stories have been published in literary magazines, children’s magazines, and online outlets like The Mighty. She is a longtime writer and leader with social justice organizations and was honored as a 2019 Women in Power Fellow in New York City. Until recently, Camellia did not publicly discuss the severity her conditions fearing the negative impact on her career as well as people’s perceptions of her, but months of visible mobility issues compelled Camellia to open up about her conditions including through her blog. Listen to Part Two as Camellia shares how migraine impacts her other health issues and what mainstream society may not realize about living with migraine and chronic illness. To learn more about Camellia Phillips go to her website at www.camelliawrites.com. You can also learn more about her freelance copywriting and SEO strategy business at www.evergreenwords.org

S2E27: Sunbreaks in Unending Storms- A Journey of Love and Parenthood while Chronically Ill- Part One 

Meet 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 was not the only one who needed to adapt to her new normal, but her faithful husband, FJ, had to adapt as well, adding many new responsibilities as a father and as a caregiver to his wife. Tune in to hear this husband-and-wife duo provide valuable insight into how they address the challenges of parenthood including mom guilt and together managing Carole’s ever evolving health finding hope and purpose along the way. 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.  

S2E28: Sunbreaks in Unending Storms- A Journey of Love and Parenthood while Chronically Ill- Part Two

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. 

S2E29: Facing the Male Stigma with Chronic Pain  

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. 

S2E30: Dating When Chronically Ill- Part One 

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

S3E1: Dating When Chronically Ill- Part Two 

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.  

S3E2: Being Transgender and Chronically Ill  

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.

S3E3: The Complexity of Living with Disability   

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.

S3E4: Learning to Overcome Adversity Through Chronic Illness

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

S3E5: Resiliency with Arthritis- Part One 

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.   

S3E6: Resiliency with Arthritis- Part Two 

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.   

S3E7: Managing the In-Between Years with Huntington’s Disease- Part One  

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. 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. (Headshot courtesy of Patient Voice) 

S3E8: Managing the In-Between Years with Huntington’s Disease- Part Two

Continuing our conversation with 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. (Headshot courtesy of Patient Voice)  

S3E9: The Cushie Effect: A Life with Cushing’s Disease- Part One 

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 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. 

S3E10: The Cushie Effect : A Life with Cushing’s Disease- Part Two 

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. 

S3E11: Advocating for ADA Compliancy- Part One  

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.   

S3E12: Advocating for ADA Compliancy- Part Two  

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.

S3E13: The Determined Disabled Entrepreneur- Part One 

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/⁠

S3E14: The Determined Disabled Entrepreneur- Part Two 

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/⁠.  

S3E15: The Determined Disabled Entrepreneur- Part Three

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/⁠

S3E16: The Constant Juggling Act of Life with Chronic Migraine Disease- Part One 

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 medication. 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/

S3E17: The Constant Juggling Act of Life with Chronic Migraine Disease- Part Two 

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/

S3E18: The Constant Juggling Act of Life with Chronic Migraine Disease- Part Three 

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/.  

S3E19: The Challenges Facing a Nontraditional Parent with Chronic Illness- Part One 

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.

S3E20: The Challenges Facing a Nontraditional Parent with Chronic Illness- Part Two 

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

S3E21: Finding Acceptance and New Purpose with Chronic Illness- Part One 

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

S3E22: Finding Acceptance and New Purpose with Chronic Illness- Part Two  

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

S3E23: Rediscovering Life with Fibromyalgia – Part One  

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 including Living Well with Arthritis and Fibromyalgia and I Am Not My Pain Podcast blog.

S3E24: Rediscovering Life with Fibromyalgia – Part Two  

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.

S3E25: Stomping through Cerebral Palsy and the Adult Medical System – Part One

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.

S3E26: Stomping through Cerebral Palsy and the Adult Medical System – Part Two 

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

S3E27: A Woman’s Journey Living with the “Suicide Disease” – Part One 

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 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/.

S3E28: A Woman’s Journey Living with the “Suicide Disease” – Part Two 

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/

S3E29: It’s Not in Your Mind- Discovering Healing from Lyme Disease and Mold Illness– Part One

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.

S3E30: It’s Not in Your Mind- Discovering Healing from Lyme Disease and Mold Illness– Part Two 

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. 

S4E1: Reclaiming Your Life Being a Parent to a Chronically Ill Child- Part One 

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 naturally became 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.

S4E2: Reclaiming Your Life Being a Parent to a Chronically Ill Child– Part Two 

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 diagnoses for her three children, Dr. Maureen now uplifts other parents in the same situation discover tools to support their journeys as a certified life coach. 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.

S4E3: Redefining Success when Chronically Ill- Part One 

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.

S4E4: Redefining Success when Chronically Ill- Part Two  

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 One, Samah reveals how she redefined success for herself. 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. 

S4E5: The Reality for a Chronically Ill Neurodivergent- Part One 

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

S4E6: The Reality for a Chronically Ill Neurodivergent- Part Two 

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

S4E7: A Nightmare Visit at the ER – Courtney’s Story- Part One 

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. 

S4E8: A Nightmare Visit at the ER – Courtney’s Story- Part Two 

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. 

S4E9: Discovering Your Authentic Self while Chronically Sick- Part One 

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

S4E10: Discovering Your Authentic Self while Chronically Sick- Part Two 

Continuing our discussion 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. 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

S4E11: The Identity Shift  

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. 

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