Parish Armstead was only 7 years old when the first signs of hidradenitis suppurativa (HS) appeared. This is a painful inflammatory skin condition that causes boil-like abscesses and scarring, which can occur anywhere that hair follicles grow. These abscesses are known to reform in the same spot even when surgically removed, or connect with each other through tunnels under the skin called tracts. This disease runs in Parish's family, and growing up it was normal to use hot soaks to treat breakouts. His first surgery was at 11, and he would continue to get surgeries throughout the years as his HS developed. It wasn't until he turned 18 that a doctor recommended a CAT scan, which discovered a system of tracts under his skin, leading to his diagnosis with hidradenitis suppurativa.



In this episode of the Major Pain podcast, Parish tells us what it is like to live with HS. This disease does not only affect the skin—it causes systemic fatigue, necessitates a regimented diet and exercise, and also carries a heavy mental health toll. Parish's journey has been one of acceptance. At first he rebelled against this disease, not wanting to make the necessary lifestyle changes or even be seen in public— how he has embraced this lifelong challenge, allowing him to discover a deeper sense of self. This upward trajectory began with HS Connect, an advocacy group that Parish is now an active member of. Finally finding community around HS showed him the importance of being visible and speaking up about his journey. He now co-hosts the HS Brotherhood Podcast with Joey Torre (two-time guest of Major Pain) and curates an advocacy platform as HSOpenWounds.



Explore HS Connect online: https://hsconnect.org/



PlayWatch the episode on YouTube or Spotify, listen here on our website or on your favorite podcast platform.

For Tim Cummings, growing up with a brother who lived with epilepsy often felt like there was a mysterious presence in their shared childhood room. Seizures would often affect his brother Matthew in the middle of the night, a terrifying experience for young Tim to witness. It felt like there was a doorway or a portal opening, connecting Matthew to an unseen realm. This feeling would haunt Tim well into adulthood, particularly after the tragic loss of his brother when Tim was 24.



After 40 years as a professional actor, Tim knew he had his own stories to tell. He went back to school, getting his masters in writing, and recently released a new novel inspired by his childhood experiences with Matthew. In The Lightening People Play, fourteen-year-old Kirby writes and produces a play to raise money for a seizure-alert dog for his younger brother Baxter. This production opens a portal through which mysterious figures and symbols appear. This story allows Tim to reckon with his past, immortalizing his brother while allowing for a more uplifting end to his brother's story.



In this episode of the Major Pain podcast, Tim recounts the personal history that inspired his new novel, reflecting on how his brother's epilepsy impacted their lives. We discuss the creation of The Lightening People Play and the ways in which chronic illness can affect not only the lives of those living through health challenges, but the lives of their loved ones.



Learn more about The Lightening People Play on Tim's website: https://www.timcummings.ink/



Join Tim for an event on 10/26 at The Village Well in Culver City with two stars from the TV show GRIMM, called Spooky Magic in Storytelling. Tickets at https://www.eventbrite.com/e/spooky-magic-in-storytelling-w-tim-cummings-tickets-1743861439509



November is Epilepsy Awareness Month, and if anyone wants to join in a 34-mile run/walk to support, they can sign up here: https://www.facebook.com/EpilepsyFoundationofAmerica/posts/-your-34-mile-walkrun-challenge-november-1-30-take-on-the-challenge-and-raise-fu/927116259443626/



The eBook for The Lightening People Play is now available on OverDrive, which serves more than 81,000 libraries and schools in 106 countries with the industry’s largest digital catalog. https://www.overdrive.com/media/12388451/the-lightning-people-play



PlayWatch the episode on YouTube, listen on your favorite podcast platform or here on our website.

In The Paper Bag Plan, the new film from writer/director Anthony Lucero, a father named Oscar (Lance Kinsey) who discovers he has cancer, decides to teach his disabled son Billy (Cole Massie) to become a grocery bagger in the hopes of landing his first job and beginning a life of independence. This is a deeply personal story, inspired by Anthony's experience growing up with a disabled brother who required full-time care from their mother. This film is notable for the authenticity of its depiction of disability, providing a dream role for Cole Massie, who has been acting since the age of 7.



In this episode of the Major Pain podcast we are joined by writer/director of The Paper Bag Plan Anthony Lucero, star of the film Cole Massie and his mother Michelle, to discuss the creation of this impactful independent film. We hear stories about the writing, casting and filming, along with the real-life inspiration for the story. We also hear from Cole what it was like growing up with cerebral palsy, and how Michelle had to fight the public school system for accommodations.



If you live in the Seattle area, don't miss a special screening of The Paper Bag Plan at the Majestic Bay Theatres in Ballard on October 5th at noon, where host of Major Pain Jesse is the General Manager! There will be a live Q&A from Anthony, Cole and Michelle after the film. Proceeds will be donated to United Cerebral Palsy. Find tickets here: https://www.majesticbay.com/movies/1000029073-the-paper-bag-plan/



Learn more about The Paper Bag Plan (and Anthony's first film East Side Sushi) on the Blue Sun Pictures website: https://bluesunpictures.com/



PlayWatch the episode on YouTube, listen on your favorite podcast platform or here on our website.

In the lifespan of this podcast we have never heard a story quite like Alia’s. Up until she was 27, she was living a healthy, active life. She was a vegetarian since the age of 15, and an avid gym-goer who continued to hit personal bests on lifts. Using her degree in philosophy with an emphasis in biomedical ethics, she works as a Research Data Coordinator for Oncology Research in Iowa. But at 27 her life was flipped upside down when a mysterious seizure kicked off a years-long, life-altering struggle.



From the beginning of this medical odyssey, Alia has received shockingly dismissive treatment from doctors. They claimed her seizures were caused by stress, insisting the only treatment she needed was therapy. When she was diagnosed with intracranial hypertension around the time her seizures started, her doctor said it was just anxiety and she should take a bath. Alia applied her experience as a medical researcher to her own case, noticing that there was a link between her seizures and a drop in blood sugar, but doctors refused to examine this link. In fact, they accused her of injecting herself with insulin because her blood sugar was repeatedly dropping so low. Soon she was having gastrointestinal issues, getting extremely bloated when eating, accompanied by sharp, stabbing pains that felt like “glass shards, nails, and acid in your stomach." She would literally pass out from the pain of trying to eat. She was slowly forced to eat less and less, switching to smoothies, and then Ensure to try to keep nutrients in her body. She quickly lost 65 pounds, but doctors refused to do anything about it because her BMI was still within normal range. Instead of helping her get the feeding tube she would need to survive, doctors accused her of starving herself for attention.



In this episode of the Major Pain podcast, Alia talks us through the impossible choices she has been forced to make over and over again on this incredibly difficult journey. At multiple points she has almost entered hospice care when the struggle seemed like it would be fruitless. Thankfully, through the Undiagnosed Disease Network and a few exceptional doctors across the country who took her seriously, Alia continues to persevere. She hopes that by sharing her story, she can help others with similar undiagnosed conditions avoid some of the struggles she has faced.



Learn more about Alia's journey on her blog: https://waitwiah.blogspot.com/



PlayWatch the episode on YouTube or Spotify, or listen on your favorite podcast platform.

Tara Sundem took the first steps on her journey to co-founding Hushabye Nursery while working as a neonatal nurse practitioner in neonatal intensive care units.  She would help care for babies suffering from neonatal abstinence syndrome (NAS), what used to be referred to as babies born addicted to various drugs.  The truth is that these babies are born dependent on these drugs but not addicted.  NAS is the term for those babies going through the withdrawal process, just like anyone else stopping exposure to drugs.  These babies would sometimes have to stay 30 days or more in the NICU without parents there.  Tara began to realize that there had to be a better way.  She wanted to give the babies a voice.



After several encounters with parents who wanted to stay with their babies, she tried to calm a baby that was on the verge of getting a dose of morphine, the common treatment for babies in the NICU for NAS to prevent them from having a seizure.  She took the baby to a dark, quiet room and began to rock the baby while deeply breathing to calm herself like in yoga class.  This environment proved to be exactly what this baby needed, avoiding the need for morphine.  Tara had a new mission.



In this episode of the Major Pain podcast, Tara shares her unique approach to neonatal abstinence syndrome. She co-founded Hushabye Nursery 5 years ago with the goal of helping babies be ok, helping parents care for those babies, and helping the family stay together.  She realized that Hushabye could meet families where they are, that opioid addiction is not a moral failing and that helping the family is helping the baby.  These babies are in danger of having multiple early adverse childhood experiences (ACE’s) very early in life that will put them at risk of many physical and mental health challenges later in life.  In this episode of the Major Pain podcast Tara shares how Hushabye has made it their mission to help babies with NAS get the help they need while keeping families together.



Learn more about Hushabye Nursery on their website: https://hushabyenursery.org/



PlayWatch the episode on YouTube or Spotify, listen on your favorite podcast platform or here on our website.

Stacey is seemingly living the dream. Working as a social media manager and patient advocate for Rare Patient Voice, she balances work with being a wife, mother, dog mom, caregiver, and pursuing her goal of a happy healthy home on the islands of Hawaii. For most people the normal struggles with preparing for your oldest to graduate high school and your youngest to enter middle school are enough. Stacey has taken on those challenges as well as health related twists and turns, not only with herself, but also her daughter. 



Stacey and her daughter Iris had parallel health crises on the small island that they call home. When her daughter was just 4 days old she had blood in her diapers and that started a journey that ended in an overnight flight to Children's Hospital of Philadelphia (CHOP). She was eventually diagnosed with Crohn’s Disease around her third birthday. This, alongside allergies to dairy, tree nuts, peanuts, and eggs made her growth and development an uphill battle for much of her childhood before current treatments like biologics proved more effective. Before her daughter's diagnosis Stacey had been thinking her fatigue was just the stress of working and raising two kids. That was until the day she found a lump in her neck and was quickly diagnosed with thyroid cancer. Thankfully surgery was quick and successful, but the long term effects of having half of a thyroid continue to this day. 



These experiences have led Stacey to the position she holds now, working for Rare Patient Voice. They work to connect patients with rare diseases and companies looking to do focus groups and surveys about the lived experience of people with rare and chronic illnesses. This work connecting patients to paid opportunities to share their experiences as well as acting as a patient advocate has allowed Stacey to use her personal experience to create community around the world, centered around health challenges that people often experience in isolation.



Use our affiliate link to sign up for Rare Patient Voice at https://rarepatientvoice.com/MajorPainPodcast



PlayWatch the episode on YouTube, listen on your favorite podcast platform or here on this website!

Brenda Snow was diagnosed with relapsing multiple sclerosis (MS) in the early 1990s, during an era when treatment was minimal and the condition was poorly understood—a time often marked by a 'diagnosis and adios' approach. Like many facing chronic illness, her diagnostic journey was filled with medical gaslighting and doctors refusing to listen. But her journey reveals a deeper truth: one of self-advocacy, strength, and rewriting the narrative of what hope within chronic illness looks like. Brenda went on to lobby for the landmark Kassebaum-Kennedy Bill in 1996, challenging stigma and sparking systemic change. She’s the founder and CEO of Snow Companies, a leading patient engagement agency, and author of Diagnosed: The Essential Guide to Navigating the Patient’s Journey—a compassionate roadmap for anyone facing a life-changing diagnosis.



At the time Brenda was diagnosed with relapsing MS, there were no FDA approved treatments. With limited medical guidance, her family became her lifeline, stepping in to support both Brenda and her young daughter. The first symptoms Brenda experienced were vision changes and extreme, overwhelming fatigue as her body felt like concrete. As the disease progressed, she lost sensation in her left foot and leg, making walking increasingly difficult. A few months after diagnosis Brenda lost function from the waist down, utilizing adaptive devices to maintain daily living activities. She was among the first patients to receive treatment for relapsing MS, and by the seventh month after diagnosis, her symptoms began to stabilize. Although neurological deficits—such as optic neuritis, spasticity, tremors and left-sided weakness—persisted, Brenda approached her condition with determination. Brenda learned how to manage the recurring symptoms and reclaim agency over her life.



In this episode of the Major Pain Podcast, Brenda Snow shares insights from her book, offering inspiration and practical guidance to those navigating the emotional terrain of diagnosis. Her work serves as both a roadmap and a lifeline—helping patients understand what to expect, how to build a life of purpose, and how to keep moving forward as a patient patient anchored by the thread of hope.



Find Brenda's book on her website: https://brendasnow.com/



PlayWatch the episode on YouTube, listen on our website, or on your favorite podcast platform.

Joan, or as she is better known on the internet Joan of Heart, is an enthusiastic content creator who is best known for her YouTube channel Pedal Playhouse. There she shares her passion for effect pedals not just by reviewing them, but demonstrating what they are capable of along with a healthy mix of comedic animations to keep the video fun and interesting.



Joan actually started her channel in response to her ongoing health issues.  She has a unique combination of gastrointestinal issues that have left her struggling with doctors to get a proper diagnosis, debating treatment options and dietary concerns.  A silent form of GERD (gastroesophageal reflux disease), that lacks the usual heartburn, has damaged her esophagus over the years leaving her with Barrett’s Esophagus (a stiffening of the lower esophagus due to chronic acid exposure).  She also has absent esophageal contractility leading to dysphagia or trouble swallowing.  Combine both of those with a hiatal hernia where the stomach slides up through the opening in the diaphragm and she has a potent cocktail of issues that antacids, proton pump inhibitors, and sleeping on a wedge pillow can only partially alleviate.  



In this episode of the Major Pain Podcast, Joan shares her passion for music, media creation, the National Association of Music Merchants (NAMM), in addition to her story of diagnosis and struggles with both mental health and physical illness.  Facing difficulty convincing doctors and preparing for corrective surgery, she tries to share her story to help others who may have the same struggles.  She reflects on her personal journey as she tries to live up to her sign off line for her videos, “be the good you wish to see in the world”.



Check out Joan of Heart at the Pedal Playhouse! https://www.youtube.com/@PedalPlayhouse



PlayWatch the episode on YouTube, listen here on the website, or on your favorite podcast platform.

Bonnie is a licensed marriage and family therapist in Washington state as well as a nationally registered and board certified art therapist.  As an undergrad in psychology and art, Bonnie knew she wanted to help people but was initially hesitant to take on the graduate school needed to become an art therapist.  After years of working with organizations helping connect people with the resources they needed, Bonnie was tired of referring clients to others for help and took the plunge on her own education.  After 3-4 years of grad school and 2 more years of post graduate training she was able to provide art therapy services to those in need, with a focus on chronic illness and cancer care.  She now works with adults providing art therapy services to help those with chronic conditions process their experience in a new way.



Alongside Katie, another therapist working with patients with chronic pain (including the host of this program), Bonnie co-founded Dream Big Wellness.  This 501(c)(3) nonprofit organization was dedicated to helping people with chronic pain, chronic illness, and cancer care access art therapy and mental health care services as they navigate the healthcare system.  Today, with a team of 7 clinicians and 4 board members, they provide services to Washington state focused in the Seattle area.  Through Dream Big Wellness, they provide unique opportunities for patients to express their emotions, struggles, and symptoms using art instead of words.  This process can often help find new ways to express hard to convey truths and a new way to think about experiences through different perspectives.



In this episode of the Major Pain Podcast we talk with Bonnie about the many benefits of art therapy and mental health care for those dealing with loss, grief, depression, post traumatic stress disorder (PTSD), and anxiety.  Chronic illness can be such a large part of a person's lived experience, and art therapy can help escape that sense of isolation.  Patients can gain understanding of their own experiences and new ways to communicate them to loved ones and care providers alike. Connect with Dream Big Wellness online at https://www.dreambigwellness.org/ While Dream Big Wellness serves patients within Washington state, there are many great organizations throughout the rest of the US. Arttherapy.org, the Art Therapy Credentials Board (ATCB.org), the American Psychological Association (APA.org), and Psychology Today all provide ways to find the right therapist for you.



Podcast editing and write-up by Casey McKenzie.



PlayWatch on YouTube or listen on your favorite podcast platform.

Hannah is still trying to live her life as any other 22 year old would, dancing with friends, enjoying the outdoors, and loving the cows on her family farm. She hopes to share this positive view of life with chronic illnesses on her public Instagram page beyond.the.label_0 to help show other young people with challenging diagnosis that joy and a life worth living are still possible.  In this episode of the Major Pain podcast, she took a few minutes to talk to us about her journey with vascular Ehlers-Danlos syndrome from a lake near her home in Tennessee.



Hannah started life as a perfectly healthy kid playing basketball, softball, cheerleading, and getting into trouble on the farm.  Even then she watched her brother struggle with seizures and a difficult road to diagnosis that ended with Chiari malformation and tethered cord syndrome.  When she got a concussion at the age of 13 everything seemed to change, and Hannah was also diagnosed with both Chiari and tethered cord, in addition to vascular Ehlers-Danlos syndrome (VEDS). She would later be diagnosed with postural orthostatic tachycardia syndrome (POTS) and is exploring the possibility that she may have mast cell activation syndrome (MCAS).  Her doctors narrowed in on the vascular form of EDS when she was 16 and began having pain, fever, and illness with her periods which became unpredictable, either missing months at a time or lasting up to a year of continuous bleeding.



After many surgeries to release the Chiari, fuse vertebrae, release the tethered cord, and a difficult decision to have a hysterectomy at age 19 to resolve her constant bleeding, Hannah still would not change a thing.  Though she used to wonder why god would do this to her, she now sees the good that can come from perseverance.  She talks us through her history with VEDS, tells us about her medications and coping mechanisms, as well as how her chronic illness journey has strengthened her faith.  With her long term boyfriend and service dog at her side, Hannah is a resource for other patients going through similar life challenges as she continues to find what her future will bring.



PlayWatch the episode on YouTube, or listen on your favorite podcast platform.

Willemijn lives with a rare condition called visual snow syndrome, or VSS. She sees static in her entire field of vision, no matter if her eyes are open or closed. This constantly moving static is black and white, similar to that of an old TV. The static itself is only one symptom out of many that Willemijn experiences, including blurred motion, after images and tinnitus, a constant ringing in the ears. She also experiences burning or cold prickling sensations in her body, and a sense of depersonalization. Overall, this is an overwhelming and debilitating constellation of overstimulating sensory experiences that has drastically changed her life.



Willemijn's journey with VSS started about a year ago, but this was not her first unexplained health crisis. Several years before she had woken up with her legs no longer working, precipitating the need for a wheelchair for the next 6 months. Doctors never figured out why this happened, partially because the problem was worked through in physical therapy while Willemijn waited a year to see a specialist. Her visual snow started when she was about 20 weeks pregnant, and when her son was born she experienced a thyroid issue that eventually turned into Hashimoto's disease. Dealing with her day to day symptoms has been frustrating enough, but the lack of answers or support from medical professionals has been deeply discouraging.



In this episode of the Major Pain podcast, Willemijn tells us what it's like to live with visual snow syndrome, and talks us through her medical journey so far. The onset of VSS has felt like she's in some kind of glitch where she doesn't feel like herself anymore, which has understandably led to anxiety and depression. Still, Willemijn has hope that researchers will uncover clues about how to treat this mysterious disease in the future. In the meantime, she has learned a great deal by connecting online with others going through similar things. She hopes that by sharing her story she can shed a light on VSS, spreading awareness about the disease itself, and the importance of continued research.



Learn more about VSS at the Visual Snow Initiative's website: https://www.visualsnowinitiative.org/



PlayWatch the episode on YouTube, or listen on your favorite podcast platform.

Today we are kicking off the fifth season of Major Pain! Jesse reflects on the past year before we jump into three interviews with previous guests, updating us on their health journeys.








Joey tells us about a surgery to manage his hidradenitis suppurativa, plus updates on his amazing advocacy work. Check out Joey's original episode here: https://majorpainpodcast.com/living-with-hidradenitis-suppurativa/Sign up for the upcoming HS Brotherhood meet up: https://zoom.us/meeting/register/d1fgOjAoTGOmmJDu9J9J8g#/registration





Colby updates us on a new diagnosis, and discusses how past trauma has influenced their decision to undergo elective surgery. Find Colby's original episode here: https://majorpainpodcast.com/managing-somatic-symptom-disorder-inside-a-multitude-of-chronic-illnesses/





Angela tells us how breathing problems led to her diagnosis with pulmonary hypertension.Find Angela's original episode here: https://majorpainpodcast.com/surviving-multiple-chronic-illnesses-surgeries-a-coma-and-being-pronounced-dead-angela-b-brown-feels-blessed-to-be-alive/








PlayWatch the episode on YouTube, or listen on your favorite podcast platform.

Since being diagnosed with bipolar 1 disorder, Sarah Fox has made it her mission to break down the stigma surrounding mental health. She is the host of the Rough Edges podcast, which provides tools for mental health education and examines the intersection between faith and mental health. Sarah's faith journey has been an integral part of her bipolar journey, in fact her diagnosis initially triggered a crisis of faith that she has since overcome.



In January of 2021, Sarah experienced a severe manic episode. This involved disruptions in her sleep, incoherent thoughts and psychosis, with both auditory and visual hallucinations. Her memories of this time are hazy, but she does remember feeling a powerful sense of euphoria, like she was on top of the world. As this manic episode increased in intensity Sarah became aggressive, at which point her family decided to have her hospitalized. During her three week stay in the hospital Sarah was diagnosed with bipolar disorder, and the severity of her manic episode qualified her as type 1.



In this episode of the Major Pain podcast, Sarah discusses how her bipolar diagnosis transformed her life, initially turning her world upside down. Her prior knowledge of bipolar had a negative connotation due to poor representation in popular media, and to be diagnosed with this disease triggered not only a crisis of faith but also an identity crisis. She suddenly had to re-contextualize everything she thought about herself, but the resulting transformation has brought her to a place of stability in both her bipolar journey and her faith. Through her mental health advocacy work she endeavors to spread a message of hope, proving it is possible to thrive with bipolar.



Connect with Sarah and check out the Rough Edges podcast at https://www.roughedgespodcast.com/



PlayWatch the episode on YouTube, or listen on your favorite podcast platform.

Alex Burket believes that his bout with bacterial meningitis in middle school may have saved his life, because it led to the discovery of his type 1 diabetes. Although meningitis resolved in about a month, diabetes would become a constant companion. 17 years later, Alex has learned a tremendous amount about living with this disease, in a journey that has gone from rebellious to transformative.



Alex is the host of the Rise to the Challenge podcast, where he speaks with athletes, CEOs, entrepreneurs, recovering addicts and more, sharing stories of overcoming obstacles. Facing challenges is Alex's passion, he enjoys pushing himself out of his comfort zone to see what he can achieve. Doing so while balancing type 1 diabetes requires a level of discipline that Alex worked hard to cultivate.



In this episode of the Major Pain podcast, Alex discusses his history with type 1 diabetes. We discuss what it was like to be diagnosed at such a young age, including the feeling of isolation this brought about. He talks us through his rebellious phase, where he pushed his body to the limit and fought against his diagnosis. He also discusses his transformation in the last 6 or 7 years, where a renewed focus on nutrition and fitness changed his body and mind for the better, developing the discipline to live harmoniously with his disease.



Connect with Alex online: https://linktr.ee/alexburket



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Pallavi's journey through chronic pain began with physical agony, but led to spiritual transformation. She grew up in India with a deep love of dance that had turned into a passionate career in her early 20s. On a fateful day about 6 months after her marriage in 2011, she fell from her bike while racing her cousins and went sliding down the road. This accident ended her dance career, leaving her in extreme pain that did not improve with time, baffling her doctors. Pallavi's situation expanded far beyond chronic pain - it became mysteriously difficult for her to use the right side of her body. She struggled to sleep, get out of bed and feed herself. Doctors had no idea how to help her, prescribing a large cocktail of medications out of desperation.



Pallavi's turning point came when she overheard a doctor saying that she wasn't actually in pain, and just wanted attention. This made her extremely angry, and she vowed to find a way to overcome this mysterious affliction. Pallavi began to learn everything she could about energy healing and holistic wellness. She soon realized that the more she meditated, the less pain she was in. After around 3.5 months of meditation, she was pain free.



On this episode of the Major Pain podcast, Pallavi shares how her harrowing journey with chronic pain has fueled her new purpose in life: to lead people with chronic pain and chronic illness through holistic wellness practices. She tells us about getting diagnosed with fibromyalgia several years after her accident, finally having a name to put to her mysterious pain. She also discusses the deep spiritual journey that resulted from this experience, learning to listen to ancient wisdom that helped transform her life. She now provides a healing space as a meditation, yoga and energy healing practitioner.



Learn more about Pallavi's wellness program at https://www.highlivingwellness.com/



PlayWatch the episode on YouTube, or listen on your favorite podcast platform.

The normal gestation period for birth is 40 weeks, and anything under 37 weeks is considered premature or preterm birth. Preeti experienced a premature birth at 24 weeks in 1989, weighing only 2 pounds, an astonishingly early birth that she feels incredibly lucky to have survived. Premature birth can impact health in a variety of ways over the course of someone's life, including neurodevelopmental challenges, cardiovascular disease, congestive heart failure, high blood pressure, chronic kidney disease and more. These impacts can present throughout the course of someone's lifespan, often unpredictably.



In this episode of the Major Pain podcast, Preeti discusses not only her personal history with preterm birth, but also the wide-ranging spectrum of how premature birth can impact someone's life. She also shares the incredible steps that were taken to keep her alive at birth in 1989. So far, the majority of Preeti's challenges have been neurodevelopmental. She lives with ADHD and anxiety, as well as mild issues with executive functioning, visual-spatial learning and focusing. Luckily she has not experienced any issues with her organs so far, but remains constantly aware that there is potential for these issues to develop at any point in her life. As an adult she has made it her mission to educate other people about premature birth, to help both patients and their parents learn about how their lives may be impacted.



Preeti has assembled a collection of research papers for anyone interested in learning more about premature birth. You can find them here: https://drive.google.com/drive/folders/1HfLIOUepjME6GX7UJHlH3PxUt_9gHux_?usp=sharing



She also recommends the following resources:



https://www.frontiersin.org/articles/10.3389/fped.2023.1213243/full#B16



https://adultpreemies.com/resources/



PlayWatch the episode on YouTube, or listen on your favorite podcast platform.

Danni Hertel (aka foodie_with_da_booty) has turned her passion for baking into a full time career. She is known for putting a fresh spin on classic treats. Her recipes have been featured in the Houston Chronicle, she has worked with dozens of celebrities and she has even won Best Holiday Cookie for the Houston area in 2021. While she enjoys bringing tasty treats to the masses, behind the scenes not everything is so sweet. For almost 5 years she has been dealing with intense abdominal pain, which is set off almost every time she eats.



Danni has been through every test her doctors can think of, but her pain remains a mystery. She experiences early satiety (getting full quickly when eating), bloating, nausea and sharp shooting pains that often leave her curled up in agony. This condition seems to be flared not only by eating, but by external stress and anxiety. Doctors often don't take her complaints seriously, blame it on anxiety, or even on the fact that she is a woman. She says, "A young woman walking into a hospital or ER complaining of stomach pains, the first thing they always think of, oh, it’s your cycle, you’re pregnant ... and so I’ve been tested for pregnancy a million times because that’s what they think it is."



In this episode of the Major Pain podcast, Danni describes her quest to diagnose her medical mystery. She shares the mental toll her journey has taken, including the development of an avoidant eating disorder. Since she experiences pain so often after eating, she struggles to eat at all. She tells us about the tests she has undergone, the potential diagnoses her doctors have discussed and the immense impact her symptoms have had on her life. Even though this situation has been extremely difficult, it has also prompted intense personal growth. She shares the things she's learned, the ways she's changed and how this challenge has helped her become a better person.



After hearing Danni's story, please reach out to majorpainpodcast@gmail.com if you have any ideas of what might be causing her symptoms.



Connect with Danni on her website: https://www.foodiewithdabooty.com/



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Looking back through the history of her medical challenges, it becomes painfully obvious that Tayler was born with the connective tissue disease EDS (Ehlers-Danlos Syndrome). Unfortunately, the lack of quality healthcare in her youth prevented this diagnosis for many years. She struggled physically throughout childhood, often being accused of laziness or being unwilling to participate, when in fact physical activity was more difficult, painful and dangerous for her than for her peers. Medical challenges often made her stand out, like her time spent in a back brace for scoliosis or her runaway heart rate in health class that led to a POTS diagnosis (postural orthostatic tachycardia syndrome) at 15 years old. Her EDS was constantly manifesting, screaming to be acknowledged, but doctor after doctor refused to take Tayler's complaints seriously.



In this episode of the Major Pain podcast Tayler shares her remarkable health journey with us, eventually coalescing around her EDS diagnosis. The tumultuous road she has traveled includes many unexpected diagnostic detours, like septic arthritis, congenital muscular torticollis, visceroptosis, MALS and more, all conditions she teaches us about during this conversation. In the past year her GI issues have necessitated transitioning to an ostomy bag, and the ileostomy surgery led to unexpected complications that she will also share. Tayler found a creative outlet in crafting custom ostomy bags (found on her Etsy store). Since her ostomy bag gave her a second chance at living more fully, she likes to craft these bags out of second-hand materials found at thrift stores. Her experiences have given her a passion for helping others, working as a sign language interpreter and disability advocate.



Check out Tayler's amazing projects or connect with her online: https://linktr.ee/distaaybled



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After recovering from CFS (chronic fatigue syndrome aka myalgic encephalomyelitis) Miguel Bautista felt like he had a new lease on life. At the height of his illness he was unable to walk or sit up in bed and needed meals blended so he could drink them. Now he is running marathons, traveling, spending quality time with loved ones and running a successful CFS recovery program. His journey through chronic illness was extremely tumultuous, but led to several profound realizations about how he was living his life. It also re-defined his life's purpose moving forward.



In this episode of the Major Pain podcast, Miguel walks us through his incredible journey through the depths of chronic illness and back. Realizing his immune system was overactive was a turning point in his journey. He elected admittance into in-patient psychiatric care to work on calming his hypersensitive nervous system. Through the use of medication and therapy, he was back on his feet within a month, experiencing long-lasting recovery.



After getting out of the hospital, Miguel began sharing his experience online. He quickly discovered the methods he had used to recover and the lessons he learned about neuroplasticity could be applied to other people. He now operates CFS Recovery, offering both free and paid coaching to individuals living through similar circumstances. He tells us about the three fundamental principals of his recovery program: determining your individual stress threshold, understanding the base problem of a hyperactive nervous system, and recognizing that your success will be dictated by how you respond to flaring symptoms.



Check out Miguel's program at https://youtube.com/@cfsrecovery, and hear his full story on this week's podcast!





PlayWatch the episode on YouTube, or listen on your favorite podcast platform.



Major Pain has been selected by FeedSpot as one of the 100 best chronic illness podcasts, making the list at #6! Check out the full list here: https://podcast.feedspot.com/chronic_illness_podcasts/?feedid=7317394&_src=f1_featured_email

When Amee was first diagnosed with epilepsy at 8 years old, one simple medication was able to control her disease. This made it easy to hide her illness from almost everyone in her life, which remained the case for about 35 years. Of course there were complications along the way. When looking to start a family she faced the potential that this medication could cause birth defects, but with the help of an understanding doctor Amee was able to have two healthy children. It wasn't until Amee was in her mid 40s that her relationship with epilepsy underwent a profound shift. Her symptoms worsened significantly - the frequency of her seizures went up dramatically. Keeping her disease a secret was no longer possible.



Amee needed to be electively hospitalized to trigger seizures and scan for their location of origin in her brain, and she knew her disease could no longer remain secret. Of the decision to go public she says, "I could do two things. I could sit and feel sorry for myself…and fall into the societal norms, or I could use it as a tool of education and empowerment. And I chose the second route." She started advocating publicly on social media on behalf of the epilepsy community, finally opening up about what she was going through. Friends that had known her for decades had absolutely no idea that Amee had this chronic condition. The outpouring of love and support she experienced was deeply cathartic.



In this episode of the Major Pain podcast, Amee discusses her complicated journey with epilepsy and the decision to stop hiding her disease. She shares the challenges of being a mother living with an unpredictable chronic illness. She also describes the sensation of having a seizure, including the first seizure she ever experienced. Amee suffers from simple partial seizures, where she does not lose awareness or consciousness, but is not able to move until the seizure passes. A huge piece of her story is the medication she takes, and the side effects it causes. Sometimes it feels like these side effects are more of a major pain than the epilepsy itself. Amee also discusses the power of turning to public advocacy, and how it has precipitated intense emotional healing to no longer hide her disease.



PlayWatch the episode on YouTube, or listen on your favorite podcast platform.