Pointing to Edward’s first symptom of Relapse–Remitting MS is tricky. From anxiety in his 20s, to poor sleep and numb hands, to back pain and difficulty walking, the road to diagnosis has been rocky. When he finally received confirmation—in the form of a terrifying MRI showing countless lesions on his brain and spine—Edward was a new father in his early 30s. Coming to terms with a lifelong condition that presents differently for everyone was a process that has slowly shifted his outlook on both his past and his future. In this episode, we speak with Edward about what his journey through symptoms and diagnosis looked like, and reflect on how facing down a debilitating illness can change your outlook on life if you let it. A musician from a young age, today Edward is exploring live performance with his solo project, Green Plastic Whistle, and facing an aversion to fame that derailed some previous opportunities. As he puts it, being told you have an unpredictable disease, that has the potential to impact anything from bladder function to your ability to see, really puts fear into perspective. With cautious optimism and a balanced take on the pros and cons of the medical system, Edward and Jesse delve into how you envision your future when you don’t know what your health will hold. They explore the promising remyelination medications that have the MS community abuzz and what it’s like to start a family in the midst of disease progression. Edward’s experience with Multiple Sclerosis has given him a new perspective on how we prioritize our lives and what’s possible when you begin to face the future without fear. Learn more about Edward’s solo project, Green Plastic Whistle:  https://www.instagram.com/greenplasticwhistle/  Listen to Green Plastic Whistle on Spotify: https://open.spotify.com/user/0b6gv1y0qrwlp4bp3ztmusnsa?si=d557f3eb1a0947c2 https://www.youtube.com/watch?v=hV_reArTc7g Watch the episode on YouTube or Spotify, listen here on our website or on your favorite podcast platform. PODCAST LINKSWEBSITE: https://majorpainpodcast.comEMAIL: [email protected]: https://majorpainpodcast.com/subscribeSPOTIFY: https://open.spotify.com/show/5NDoD07WJmICdfdRKq0TyNAPPLE PODCASTS: https://podcasts.apple.com/us/podcast/major-pain/id1562947550?mt=2&ls=1 SOCIAL MEDIAINSTAGRAM: https://www.instagram.com/majorpainpodcastTIKTOK: https://www.tiktok.com/@majorpainpodcastYOUTUBE: https://www.youtube.com/@MajorPainPodcastFACEBOOK: https://www.facebook.com/majorpainpodcast AFFILIATE LINKSRARE PATIENT VOICE: https://rarepatientvoice.com/MajorPainPodcastAMAZON SHOP: https://www.amazon.com/shop/majorpainpodcastNEURAHEALTH: https://www.neurahealth.co/majorpain

Katie Brennan’s experience with Long COVID began in the earliest days of the pandemic, while she was working with the UK’s National Health Service on data-driven policy changes to improve care for patients. Though her experience with the acute phase was relatively minor, instead of steadily recovering, she developed a range of ongoing symptoms—difficulty breathing, sudden heart rate spikes, dilated pupils, fatigue, brain fog, and difficulty focusing. Although she was still functional enough to work, everything felt harder, and she no longer felt like herself. Eventually, she realized she had Long COVID. Navigating the push–crash cycle is common for many people with chronic illness: Katie would push herself too hard, frustrated by what her body could no longer handle, then crash and face hours or days of exhaustion and other symptoms as she recovered. A second COVID infection eroded what gains she had made. Recognizing the need to try something new, Katie attended a fitness class run by former biathlon Olympian and world champion Andrea Henkel Burke. Andrea’s combination of gentle but purposeful movement and various nervous system regulation techniques gave her participants small, tangible ways to control the body’s shift out of near-constant fight-or-flight into essential rest-and-repair.   Together, Katie and Andrea founded ThriveNinety, which aids people with Long COVID and other infection-induced conditions by translating science into simple, practical tools that help restore how their bodies function and help them rebuild capacity and performance. Their program provides movement and other sensory inputs that are accessible for anyone, wherever they’re at in their illness recovery or maintenance. They also guide participants through nutritional changes known to have a positive effect, such as anti-inflammatory diets. Throughout her journey, Katie has discovered the phenomenal impact of listening to her body’s cues and making proactive adjustments that enable her to live a healthy, happy, active life with Long COVID. ThriveNinety shows others how they, too, can improve and even thrive in the face of long-term illness. Learn more about ThriveNinety’s programs and mission: https://www.thriveninety.com/  Buy the book, Recovery Kitchen: https://www.thriveninety.com/recovery-kitchen PlayWatch the episode on YouTube or Spotify, listen here on our website or on your favorite podcast platform. PODCAST LINKSWEBSITE: https://majorpainpodcast.comEMAIL: [email protected]: https://majorpainpodcast.com/subscribeSPOTIFY: https://open.spotify.com/show/5NDoD07WJmICdfdRKq0TyNAPPLE PODCASTS: https://podcasts.apple.com/us/podcast/major-pain/id1562947550?mt=2&ls=1 SOCIAL MEDIAINSTAGRAM: https://www.instagram.com/majorpainpodcastTIKTOK: https://www.tiktok.com/@majorpainpodcastYOUTUBE: https://www.youtube.com/@MajorPainPodcastFACEBOOK: https://www.facebook.com/majorpainpodcast AFFILIATE LINKSRARE PATIENT VOICE: https://rarepatientvoice.com/MajorPainPodcastAMAZON SHOP: https://www.amazon.com/shop/majorpainpodcastNEURAHEALTH: https://www.neurahealth.co/majorpain

Today we kick off the sixth season of Major Pain by catching up with previous guests Danni, Courtney, Joan and Kaitlyn. Danni is a baker who was risking extreme pain every time she would eat, and doctors had no idea why. She returns to the show with a huge update: she finally has a diagnosis! She tells us how a pocket of fluid around her heart and shortness of breath finally triggered doctors to take her seriously, opening a diagnostic pathway that has resulted in treatment and answers. Listen to her original episode here: https://majorpainpodcast.com/every-time-this-baker-eats-she-risks-intense-abdominal-pain/ Courtney used to think of herself as a hot potato patient, being passed from specialist to specialist in search of a diagnosis for her mystery illness. She returns to the show with a new diagnosis of Yao syndrome and new treatment plan, and is even seeing the doctor her disease is named for! Listen to her original episode here: https://majorpainpodcast.com/the-infuriating-contradictions-of-undiagnosed-illness/ Joan lives with a complex and frustrating form of GERD that has prevented her from lying flat for the past 5 years. She returns to the show having recently undergone surgery called toupet fundoplication, aimed at managing her symptoms. She describes the surgery and the outcome, discussing whether she feels it was a worthwhile procedure. Listen to her original episode here: https://majorpainpodcast.com/joan-of-heart-from-pedal-playhouse-on-her-complex-medical-journey/ Kaitlyn originally appeared on the show as a recent college graduate who had been diagnosed with 14 chronic illnesses. She returns with an additional diagnosis and a new outlook on life. Listen to her original episode here: https://majorpainpodcast.com/kaitlyn-tells-us-about-living-with-14-chronic-illnesses/ PlayWatch the episode on YouTube or Spotify, listen here on our website or on your favorite podcast platform. PODCAST LINKSWEBSITE: https://majorpainpodcast.comEMAIL: [email protected]: https://majorpainpodcast.com/subscribeSPOTIFY: https://open.spotify.com/show/5NDoD07WJmICdfdRKq0TyNAPPLE PODCASTS: https://podcasts.apple.com/us/podcast/major-pain/id1562947550?mt=2&ls=1 SOCIAL MEDIAINSTAGRAM: https://www.instagram.com/majorpainpodcastTIKTOK: https://www.tiktok.com/@majorpainpodcastYOUTUBE: https://www.youtube.com/@MajorPainPodcastFACEBOOK: https://www.facebook.com/majorpainpodcast AFFILIATE LINKSRARE PATIENT VOICE: https://rarepatientvoice.com/MajorPainPodcastAMAZON SHOP: https://www.amazon.com/shop/majorpainpodcastNEURAHEALTH: https://www.neurahealth.co/majorpain

Justin Goodman is on a mission with his organization Project 55: to educate, equip and empower the 55% of adults with mental health struggles that aren’t getting the care they need. His journey to this mission was a tumultuous one, in which he has overcome addiction, learned to manage Bipolar II, and faced the lifelong challenge of Scheuermann’s disease. Justin is now focused on helping others in crisis, having developed a deep sense of gratitude for the lessons he has learned along the way. In this episode of the Major Pain podcast, we sit down with Justin to hear the incredible story of everything he has overcome, and how it inspired the founding of Project 55. As a teenager he developed Scheuermann’s disease, a skeletal disorder characterized by uneven growth of the vertebrae, leading to a forward curvature of the spine known as kyphosis. At first it was assumed he was just having growing pains, but as his disease rapidly progressed it began to restrict every aspect of his life. By the time it was determined he was actually experiencing Scheuermann’s disease he was given two options: manage the pain with opioids, or undergo extreme surgery. He chose prescription pain management. Since this was in the time before narcotics were not closely monitored, he soon developed a dangerous dependence. If not for an intervention from his closest friends, he would not have survived. Justin now manages the pain from Scheuermann’s disease using a variety of alternative techniques, including conditioning his lower back, mobility work and staying away from inflammatory foods. He has also found relief from a manual therapy called rolfing, in which the rigid fascia around the muscles is ground down to make it malleable. Justin is an avid golfer, and although Scheuermann’s disease initially took him away from the sport, he is now able to participate again due to the success of his disease management. Justin also discusses his journey with Bipolar II, and how mental health struggles inspired him to create Project 55. As a passionate advocate for others in need, Justin has translated his own struggles into a powerful platform for change. Learn more about Project 55 on their website: https://project55.org/ PlayWatch the episode on YouTube, listen here on our website or on your favorite podcast platform. PODCAST LINKSWEBSITE: https://majorpainpodcast.comEMAIL: [email protected]: https://majorpainpodcast.com/subscribeSPOTIFY: https://open.spotify.com/show/5NDoD07WJmICdfdRKq0TyNAPPLE PODCASTS: https://podcasts.apple.com/us/podcast/major-pain/id1562947550?mt=2&ls=1 SOCIAL MEDIAINSTAGRAM: https://www.instagram.com/majorpainpodcastTIKTOK: https://www.tiktok.com/@majorpainpodcastYOUTUBE: https://www.youtube.com/@MajorPainPodcastFACEBOOK: https://www.facebook.com/majorpainpodcast AFFILIATE LINKSRARE PATIENT VOICE: https://rarepatientvoice.com/MajorPainPodcastAMAZON SHOP: https://www.amazon.com/shop/majorpainpodcastNEURAHEALTH: https://www.neurahealth.co/majorpain

As a baby, Sarah didn’t know that her diagnosis with asthma would be the first in a long list of diagnoses that would eventually grow to over twenty.  Today she manages these conditions with the help of her husband Dan and cat Daisy.  She juggles her self care with working as a fundraiser for a charity organization and screening films for the South by Southwest film festival.  When not working, she finds joyful movement as a ballroom dancer. In this episode of the Major Pain podcast, Jesse talks with Sarah about her health journey, including several illnesses we have never discussed on the show before.  The first is exercise induced laryngeal obstruction (EILO), an asthma like condition involving the vocal chords closing, which prevents patients from bringing in air properly during intense physical activity.  The second is lichen sclerosus, a skin condition causing discolored and thin skin.  Due to the sensitive and personal nature of this condition it can be extremely hard to discuss, making first-hand information scarce. Other topics of discussion include central auditory processing disorder, making it difficult to understand words spoken in a noisy or distracting environment, and managing neurodivergence on top of multiple physical conditions. Sarah is continuing to work at being joyfully disabled. She hopes to show others that with a little accommodation you can live a full life with chronic illness.  She wants others to take the advice she has the most trouble taking herself, to be compassionate to yourself, and know that gratitude is not a competition. PlayWatch the episode on YouTube or Spotify, or listen on your favorite podcast platform. PODCAST LINKSWEBSITE: https://majorpainpodcast.comEMAIL: [email protected]: https://majorpainpodcast.com/subscribeSPOTIFY: https://open.spotify.com/show/5NDoD07WJmICdfdRKq0TyNAPPLE PODCASTS: https://podcasts.apple.com/us/podcast/major-pain/id1562947550?mt=2&ls=1 SOCIAL MEDIAINSTAGRAM: https://www.instagram.com/majorpainpodcastTIKTOK: https://www.tiktok.com/@majorpainpodcastYOUTUBE: https://www.youtube.com/@MajorPainPodcastFACEBOOK: https://www.facebook.com/majorpainpodcast AFFILIATE LINKSRARE PATIENT VOICE: https://rarepatientvoice.com/MajorPainPodcastAMAZON SHOP: https://www.amazon.com/shop/majorpainpodcastNEURAHEALTH: https://www.neurahealth.co/majorpain

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 PlayWatch the episode on YouTube or Spotify, listen here on our website or on your favorite podcast platform. PODCAST LINKSWEBSITE: https://majorpainpodcast.comEMAIL: [email protected]: https://majorpainpodcast.com/subscribeSPOTIFY: https://open.spotify.com/show/5NDoD07WJmICdfdRKq0TyNAPPLE PODCASTS: https://podcasts.apple.com/us/podcast/major-pain/id1562947550?mt=2&ls=1 SOCIAL MEDIAINSTAGRAM: https://www.instagram.com/majorpainpodcastTIKTOK: https://www.tiktok.com/@majorpainpodcastYOUTUBE: https://www.youtube.com/@MajorPainPodcastFACEBOOK: https://www.facebook.com/majorpainpodcast AFFILIATE LINKSRARE PATIENT VOICE: https://rarepatientvoice.com/MajorPainPodcastAMAZON SHOP: https://www.amazon.com/shop/majorpainpodcastNEURAHEALTH: https://www.neurahealth.co/majorpain

In this episode of Major Pain, we continue our talks with people dealing with hidradenitis suppurativa.  Today we talk to Angel, a mother of five who has had multiple health challenges.  A self described “homestead mom”, Angel loves to grow vegetables in the garden and make her own food like butter whenever she is able.  She stays busy homeschooling her autistic son while raising her other four children, including a fifteen month old.  She hopes someday to get a small acreage and have a few animals and live the country life. At thirty years old, she was diagnosed with thyroid cancer and had to have multiple surgeries to drain and remove the liquid filled tumor, and eventually her entire thyroid.  After the surgeries and radiation treatment, she still struggles with getting the right supplements to replace her thyroid hormones, properly absorb nutrition and avoiding fluctuations in weight. After the birth of her son, the skin symptoms that had been an undiagnosed since she was a teenager became much worse.  She had struggled with doctors telling her that she had contact rashes or allergies to certain fabrics or personal care products like deodorant.  Finally, at thirty three years old she got the diagnosis of hidradenitis suppurativa.  While finally being diagnosed was a relief, it was also the beginning of a long road looking for treatments.  She tried Humera but experienced minimal relief with a lot of side effects.  Cosentyx had worked fairly well for her until she became pregnant with her youngest child.  Now she is attempting to get back on a new medication but has struggled with insurance for approval for a year. On this podcast episode she talks us through her journey so far, and discusses her public advocacy as @hsqueen96. PlayWatch the episode on YouTube or Spotify, listen here on our website or on your favorite podcast platform. PODCAST LINKSWEBSITE: https://majorpainpodcast.comEMAIL: [email protected]: https://www.patreon.com/majorpainpodcastSUBSCRIBE: https://majorpainpodcast.com/subscribeSPOTIFY: https://open.spotify.com/show/5NDoD07WJmICdfdRKq0TyNAPPLE PODCASTS: https://podcasts.apple.com/us/podcast/major-pain/id1562947550?mt=2&ls=1 SOCIAL MEDIAINSTAGRAM: https://www.instagram.com/majorpainpodcastTIKTOK: https://www.tiktok.com/@majorpainpodcastYOUTUBE: https://www.youtube.com/@MajorPainPodcastFACEBOOK: https://www.facebook.com/majorpainpodcast AFFILIATE LINKSRARE PATIENT VOICE: https://rarepatientvoice.com/MajorPainPodcastAMAZON SHOP: https://www.amazon.com/shop/majorpainpodcastNEURAHEALTH: https://www.neurahealth.co/majorpain

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. PODCAST LINKSWEBSITE: https://majorpainpodcast.comEMAIL: [email protected]: https://majorpainpodcast.com/subscribeSPOTIFY: https://open.spotify.com/show/5NDoD07WJmICdfdRKq0TyNAPPLE PODCASTS: https://podcasts.apple.com/us/podcast/major-pain/id1562947550?mt=2&ls=1 SOCIAL MEDIAINSTAGRAM: https://www.instagram.com/majorpainpodcastTIKTOK: https://www.tiktok.com/@majorpainpodcastYOUTUBE: https://www.youtube.com/@MajorPainPodcastFACEBOOK: https://www.facebook.com/majorpainpodcast AFFILIATE LINKSRARE PATIENT VOICE: https://rarepatientvoice.com/MajorPainPodcastAMAZON SHOP: https://www.amazon.com/shop/majorpainpodcastNEURAHEALTH: https://www.neurahealth.co/majorpain

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. PODCAST LINKSWEBSITE: https://majorpainpodcast.comEMAIL: [email protected]: https://majorpainpodcast.com/subscribeSPOTIFY: https://open.spotify.com/show/5NDoD07WJmICdfdRKq0TyNAPPLE PODCASTS: https://podcasts.apple.com/us/podcast/major-pain/id1562947550?mt=2&ls=1 SOCIAL MEDIAINSTAGRAM: https://www.instagram.com/majorpainpodcastTIKTOK: https://www.tiktok.com/@majorpainpodcastYOUTUBE: https://www.youtube.com/@MajorPainPodcastFACEBOOK: https://www.facebook.com/majorpainpodcast AFFILIATE LINKSRARE PATIENT VOICE: https://rarepatientvoice.com/MajorPainPodcastAMAZON SHOP: https://www.amazon.com/shop/majorpainpodcastNEURAHEALTH: https://www.neurahealth.co/majorpain

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. PODCAST LINKSWEBSITE: https://majorpainpodcast.comEMAIL: [email protected]: https://majorpainpodcast.com/subscribeSPOTIFY: https://open.spotify.com/show/5NDoD07WJmICdfdRKq0TyNAPPLE PODCASTS: https://podcasts.apple.com/us/podcast/major-pain/id1562947550?mt=2&ls=1 SOCIAL MEDIAINSTAGRAM: https://www.instagram.com/majorpainpodcastTIKTOK: https://www.tiktok.com/@majorpainpodcastYOUTUBE: https://www.youtube.com/@MajorPainPodcastFACEBOOK: https://www.facebook.com/majorpainpodcast AFFILIATE LINKSRARE PATIENT VOICE: https://rarepatientvoice.com/MajorPainPodcastAMAZON SHOP: https://www.amazon.com/shop/majorpainpodcastNEURAHEALTH: https://www.neurahealth.co/majorpain