Major Pain (2026)

04/01/2026

Several years ago, Janene was at a golf tournament when something terrifying happened. Out of nowhere her feet began to burn, as if she were walking on hot coals. She discovered that blisters were spreading across her feet at an alarming rate, as if she were being burned by an invisible fire. As the blisters continued to spread she rushed to the doctor, but nobody had any idea what was going on. After several terrifying days she finally saw a dermatologist who diagnosed her with generalized pustular psoriasis (GPP). She went home with four creams, pain meds and steroids. Thankfully, this intervention helped bring this outbreak of GPP under control.

In this episode of the Major Pain podcast, Janene talks us through her experience with generalized pustular psoriasis as well as her complicated chronic illness history. Along with GPP she has also been diagnosed with plaque psoriasis, lupus, Sjogren’s syndrome, Raynaud’s disease and rheumatoid arthritis. As a mother of twins, managing this many diseases has been a challenge. However, her experience with GPP was the most horrific medical trauma she has been through. That’s why she has devoted herself to spreading information and awareness about generalized pustular psoriasis, to help others find their way through this painful disease.

Learn more about generalized pustular psoriasis at GPPandMe.com

10/11/2025

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 (two-time guest of Major Pain) and curates an advocacy platform as .

16/10/2025

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.

22/09/2025

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 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.

08/09/2025

In the lifespan of this 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 were caused by stress, insisting the only treatment she needed was therapy. When she was diagnosed with 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 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.

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.

06/08/2025

Tara Sundem took the first steps on her journey to co-founding .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.

16/07/2025

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.

02/07/2025

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.

11/06/2025

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”.

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

22/05/2025

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.

07/05/2025

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 .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.

30/04/2025

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.

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