Major Pain: Recent Episodes
Jesse Mercury
The Major Pain podcast is a collection of interviews from people living with chronic illness and disability. Our goal is to spread awareness, empathy and community around experiences often lived through in isolation. Through sharing these stories important themes have become increasingly apparent, including the dangers of medical gaslighting, the importance of self-advocacy and the fact that none of us are in this alone. You can share your thoughts, your story, or inquire about appearing on the show at majorpainpodcast@gmail.com.
How do you live with the ever-looming uncertainty of being a gene carrier for a fatal disease? Amyotrophic lateral sclerosis—better known as ALS or Lou Gehrig’s disease—was long believed not to be genetic. Today, however, research shows that 10-15% of cases are linked to the mutation of various genes. The journey of potential future illness is one Mindy Uhrlaub has navigated since 2018, when she learned that she carries the C9OF72 genetic mutation.
Since losing her grandfather and then her mother to ALS, Mindy has navigated the precariousness of questioning every symptom she develops, the hard knowledge that her children could also be carriers, and the decisions that come with any life-changing diagnosis: how will this knowledge impact my approach to the present and the future? In Mindy’s case, it has led her to advocacy and authorship. She is a founder of the End the Legacy community for carriers of ALS and FTD (frontotemporal degeneration) and the author of the Amazon bestseller, “Last Nerve: A Memoir of Illness and the Endurance of Family.”
Everyone with chronic illness or the genetic potential to develop it must select a unique path. Mindy has chosen to immerse herself in the promise the future holds. She takes every preventative step available to her, including avoiding chemical exposure and inflammatory foods and taking an ALS drug prophylactically. Through End the Legacy, she and other community members pursue policy change and education through webinars and summits. She participates in numerous studies and shares the struggle of facing down the inevitable emotional triggers. For Mindy, this approach is not about fearlessness but about devoting her time, and her heart, to the life-affirming aspects of her unpredictable situation.
Learn more about End the Legacy, a non-profit org for genetic carriers of ALS and FTD: https://www.endthelegacy.org/
Buy “Last Nerve: A Memoir of Illness and the Endurance of Family”: https://www.mindyuhrlaub.com/last-nerve
https://youtu.be/l9w6YdTifVcWatch the episode on YouTube or Spotify, listen here on our website or on your favorite podcast platform.
PODCAST LINKS
WEBSITE: https://majorpainpodcast.com
EMAIL: majorpainpodcast@gmail.com
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SPOTIFY: https://open.spotify.com/show/5NDoD07WJmICdfdRKq0TyN
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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_reArTc7gWatch the episode on YouTube or Spotify, listen here on our website or on your favorite podcast platform.
PODCAST LINKS
WEBSITE: https://majorpainpodcast.com
EMAIL: majorpainpodcast@gmail.com
SUBSCRIBE: https://majorpainpodcast.com/subscribe
SPOTIFY: https://open.spotify.com/show/5NDoD07WJmICdfdRKq0TyN
APPLE PODCASTS: https://podcasts.apple.com/us/podcast/major-pain/id1562947550?mt=2&ls=1
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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 LINKS
WEBSITE: https://majorpainpodcast.com
EMAIL: majorpainpodcast@gmail.com
SUBSCRIBE: https://majorpainpodcast.com/subscribe
SPOTIFY: https://open.spotify.com/show/5NDoD07WJmICdfdRKq0TyN
APPLE PODCASTS: https://podcasts.apple.com/us/podcast/major-pain/id1562947550?mt=2&ls=1
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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 LINKS
WEBSITE: https://majorpainpodcast.com
EMAIL: majorpainpodcast@gmail.com
SUBSCRIBE: https://majorpainpodcast.com/subscribe
SPOTIFY: https://open.spotify.com/show/5NDoD07WJmICdfdRKq0TyN
APPLE PODCASTS: https://podcasts.apple.com/us/podcast/major-pain/id1562947550?mt=2&ls=1
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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 LINKS
WEBSITE: https://majorpainpodcast.com
EMAIL: majorpainpodcast@gmail.com
SUBSCRIBE: https://majorpainpodcast.com/subscribe
SPOTIFY: https://open.spotify.com/show/5NDoD07WJmICdfdRKq0TyN
APPLE PODCASTS: https://podcasts.apple.com/us/podcast/major-pain/id1562947550?mt=2&ls=1
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AFFILIATE LINKS
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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 LINKS
WEBSITE: https://majorpainpodcast.com
EMAIL: majorpainpodcast@gmail.com
SUBSCRIBE: https://majorpainpodcast.com/subscribe
SPOTIFY: https://open.spotify.com/show/5NDoD07WJmICdfdRKq0TyN
APPLE PODCASTS: https://podcasts.apple.com/us/podcast/major-pain/id1562947550?mt=2&ls=1
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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 LINKS
WEBSITE: https://majorpainpodcast.com
EMAIL: majorpainpodcast@gmail.com
SUBSCRIBE: https://majorpainpodcast.com/subscribe
SPOTIFY: https://open.spotify.com/show/5NDoD07WJmICdfdRKq0TyN
APPLE PODCASTS: https://podcasts.apple.com/us/podcast/major-pain/id1562947550?mt=2&ls=1
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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 LINKS
WEBSITE: https://majorpainpodcast.com
EMAIL: majorpainpodcast@gmail.com
PATREON: https://www.patreon.com/majorpainpodcast
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AFFILIATE LINKS
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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 LINKS
WEBSITE: https://majorpainpodcast.com
EMAIL: majorpainpodcast@gmail.com
SUBSCRIBE: https://majorpainpodcast.com/subscribe
SPOTIFY: https://open.spotify.com/show/5NDoD07WJmICdfdRKq0TyN
APPLE PODCASTS: https://podcasts.apple.com/us/podcast/major-pain/id1562947550?mt=2&ls=1
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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 LINKS
WEBSITE: https://majorpainpodcast.com
EMAIL: majorpainpodcast@gmail.com
SUBSCRIBE: https://majorpainpodcast.com/subscribe
SPOTIFY: https://open.spotify.com/show/5NDoD07WJmICdfdRKq0TyN
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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 LINKS
WEBSITE: https://majorpainpodcast.com
EMAIL: majorpainpodcast@gmail.com
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SPOTIFY: https://open.spotify.com/show/5NDoD07WJmICdfdRKq0TyN
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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 DiseaseNetwork 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. PODCAST LINKS
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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. PODCAST LINKS
WEBSITE: https://majorpainpodcast.com
EMAIL: majorpainpodcast@gmail.com
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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!
PODCAST LINKS
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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. PODCAST LINKS
WEBSITE: https://majorpainpodcast.com
EMAIL: majorpainpodcast@gmail.com
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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.PODCAST LINKS
WEBSITE: https://majorpainpodcast.com
EMAIL: majorpainpodcast@gmail.com
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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.PODCAST LINKS
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EMAIL: majorpainpodcast@gmail.com
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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.PODCAST LINKS
WEBSITE: https://majorpainpodcast.com
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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.PODCAST LINKS
WEBSITE: https://majorpainpodcast.com
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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.PODCAST LINKS
WEBSITE: https://majorpainpodcast.com
EMAIL: majorpainpodcast@gmail.com
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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/alexburketPlayWatch on YouTube, or listen on your favorite podcast platform.
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=sharingShe also recommends the following resources:https://www.frontiersin.org/articles/10.3389/fped.2023.1213243/full#B16https://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/PlayWatch the episode on YouTube, or listen on your favorite podcast platform.
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/distaaybledPlayWatch the episode on YouTube, or listen on your favorite podcast platform.
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.
In 1982 Steve Lovelace was pinned by a felled tree that barber chaired, meaning it split lengthwise while being cut down. His injuries were severe - his face and several vertebrae were crushed. Steve found himself instantly paralyzed and stuck under this tree, where he would remain for hours while waiting for help. Eventually he was taken to the hospital, where he would begin the months-long recovery process. Miraculously, Steve would eventually regain full functionality, but the ramifications of this injury would continue to reveal themselves for years to come.In this episode of the Major Pain podcast, Steve talks us through the many twists and turns of the journey he has been on since being crushed by a tree. He discusses developing arachnoiditis, an intractable pain condition involving chronic inflammation of the arachnoid tissue that surrounds the spinal cord, developed after a surgery to remove hardware from his low back. This has led to the slow progression of paralysis below the waist, on top of a second condition involving nerve damage of the lower back called cauda equina syndrome. Although Steve's pain is extreme it hasn't stopped him from making sports history, becoming the 2nd disabled person to complete a triathlon. He discusses the mindset that allows him to overcome adversity, saying you can either succumb to it or rise above it. Helping others to face adversity has become his life's passion, a life filled with joy and gratitude in spite of chronic pain. Connect with Steve on Instagram: https://www.instagram.com/splovelace/PlayWatch the episode on YouTube, or listen on your favorite podcast platform.
Andi and Jesse are married! For their wedding registry they asked their community to donate to an Undiagnosed Disease Fund, with the goal of raising enough money to provide genetic testing for an individual in need. Full genome sequencing can be helpful for individuals with a mystery illness, either to point towards an answer, or rule out upwards of 7,000 diseases in one test. This process was very helpful in Jesse's own search for a diagnosis, but his insurance would not cover the test. Andi gave Jesse a massive gift by purchasing full genome sequencing for him, and the couple have fantasized about providing this gift to others ever since. Andi and Jesse created a GoFundMe for their wedding registry, and have been absolutely astonished to already raise over $9,000. This means they can purchase genetic testing for at least 3 people! If you are in need of genetic testing to help diagnose a mystery illness, you can apply now to receive this gift. Email us at majorpainpodcast@gmail.com and tell us a bit about your health journey so far. You can also contribute to the Undiagnosed Disease Fund, in the hopes of helping more people! https://www.gofundme.com/f/our-registry-the-undiagnosed-disease-fund?attribution_id=sl:b2f12341-d3a8-4a01-8efc-588023fac387PlayHere is a video from Andi and Jesse discussing their wedding registry, the Undiagnosed Disease FundIn this episode of the Major Pain podcast, Andi and Jesse discuss their wedding, the Undiagnosed Disease Fund, and an unexpected update to Jesse's health journey. While his own genetic testing did not reveal a diagnosis, new information has been provided by re-running his genome sequencing to report out carrier testing. He has tested as a carrier for a disease called cystathioninuria, which can cause movement disorder symptoms eerily similar to what Jesse has experienced. Although he is only a carrier and should not actually have the disease, he moved forward with blood work that shows evidence that he may have some form of this condition. Since cystathioninuria is so rare very little is known about it, and he is struggling to find information. Please reach out at majorpainpodcast@gmail.com if you have any relevant information to share!There is no video version of the podcast this week, as this episode was recorded in person instead of via Zoom. There will be no new podcasts for the remainder of November, while Andi and Jesse are on their honeymoon. We will be back with new episodes in December. Patreon subscribers can look forward to a special bonus episode, recorded from a honeymoon suite in Jamaica! Sign up on Patreon to gain access to all bonus episodes, receive special gifts, shoutouts and more: https://www.patreon.com/majorpainpodcast
Living with a chronic health condition is difficult enough, but managing health records, medications and symptom tracking can feel impossible. That's what the folks at Guava are trying to fix. They have created a free centralized holistic health management tool that integrates with over 50,000 health organizations across the US (including MyChart), top fitness/medical devices and even local weather to bring you personalized insights into your health. Guava allows you to effortlessly track symptoms, mood, medication and activities, pulling data from your hospital records and lab tests for an integrated picture of your health. It features an AI enabled visit prep experience to help you prepare for doctors visits. You can even track your medication, hydration and more with Guava tags. Stick a tag to anything you want to track and tap your phone for instant logging. In this episode of the Major Pain podcast, we learn about Guava from Isabel Stewart (Head of Product) and Emily von Weise (Head of Marketing). Emily also shares her chronic illness journey with us, and how her experiences have impacted the development of Guava. She lives with the classic trifecta of EDS (Ehlers-Danlos Syndrome), POTS (postural orthostatic tachycardia syndrome) and MCAS (mast cell activation syndrome) along with celiac disease and several tick-borne illnesses. She talks us through the frustrating diagnostic process, where she had to quit working and focus solely on her health. Living through years of medical gaslighting makes her work with Guava feel deeply impactful, allowing her to make life easier for individuals within the chronic illness community. Learn more about Guava at https://guavahealth.com/PlayWatch the episode on YouTube, or listen on your favorite podcast platform.
Danielle was born a micro preemie at just 25 weeks, weighing only 1 pound 8 ounces. Diagnosed with cerebral palsy, doctors gave her a .5% chance of living a meaningful life. Alongside cerebral palsy, she also lives with POTS and scoliosis, but this has not stopped her from owning a restaurant at the age of 25 and empowering individuals with disabilities. With the support of her family, friends, therapists, and caregivers, Danielle has been able to thrive, turning challenges into opportunities.Cerebral palsy is a condition that affects motor function, caused by a brain injury before or shortly after birth. In Danielle’s case, all four limbs are affected. She was wheelchair dependent until she was 6 years old, then transitioned to a walker and eventually forearm crutches. Her own journey with disability has led her to create opportunities for others. At her restaurant Pizza Pete's in the south suburbs of Chicago (which has now opened a second location) she encourages an inclusive and accessible environment for both her employees and customers, while also donating 20% of proceeds to families in need every Tuesday. In this episode of Major Pain podcast, Danielle emphasizes the importance of gratitude, noting that if she had been born just three years earlier, prior to certain medical advances that impacted her early care, she might not have survived. Additionally, Danielle raises awareness that cerebral palsy exists on a spectrum, which tends to be overlooked in media portrayals of this disease. She has proved the doctors wrong who claimed she would never lead a meaningful life, not only through her personal journey but through the impact she continues to make on her community. PlayWatch the episode on YouTube, or listen on your favorite podcast platform.
Jennifer Weaver is the host of the My Spoonie Sisters podcast, and her history with chronic illness is a storied tale. While most people never have to worry about the 1% chance of side effects from medication, Jen is the person who will develop the rare reaction. That’s exactly how she came to suffer from medically induced pustular psoriasis, living through a horrific year where her skin was basically being burned from the inside out. Of her journey she says, “It feels like my body hates me. There’s something so wrong with me because I have all the reactions. If it’s in the tiny print and it says there’s going to be a 1% chance it somehow ends up being me.”
In this episode of the Major Pain podcast, Jen shares her chronic illness journey so far. She talks us through the frustrating experience of getting diagnosed with rheumatoid arthritis (RA), spending a full year seeing a rheumatologist who provided terrible care. Firing that doctor allowed her to finally find good care and an official diagnosis of seronegative RA, but a whole new set of problems arose while trialing medications to treat her disease. That’s when she discovered she has a rare reaction to TNF inhibitors, and developed pustular psoriasis. Although her journey has been a tumultuous one, she feels it has also made her a better, more compassionate person. She started the My Spoonie Sisters podcast and community at the end of 2021, and finds great joy helping others who live with chronic illness feel less alone.
Check out My Spoonie Sisters: https://linktr.ee/myspooniesisters
PlayWatch the episode on YouTube, or listen on your favorite podcast platform.PODCAST LINKS
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Dr. Melanie Hoppers never planned to become an expert on chronic fatigue syndrome (CFS). She learned about it briefly in medical school, but her professors largely brushed off the complaints of CFS patients. It wasn’t until her own daughter got sick that Dr. Hoppers began to research CFS, becoming desperate to find anything that might help. That’s when she discovered the work of Lucinda Bateman and the Bateman Horne Center, a clinical care and research institution specializing in CFS (also known as myalgic encephalomyelitis or ME) that focuses on educating not just patients, but healthcare providers about this complex illness. Dr. Hoppers learned so much about how to manage CFS and it’s common comorbidities like mast cell activation syndrome (MCAS) that she soon decided to join forces with the Bateman Horne Center to fight back against these complex chronic diseases.
In this episode of the Major Pain podcast, Dr. Hoppers discusses her journey from CFS caregiver to practitioner. She shares the personal history of her daughter’s illness that brought CFS to her attention, and discusses how learning to combat this disease has changed the course of her professional life. We also discuss the disease itself, and some of the techniques the Bateman Horne Center is utilizing to manage it. She tells us that many people with CFS/ME also have to deal with MCAS, while sharing the basics of bringing mast cells under control. She also discusses the importance of pacing for those suffering from post-exertional malaise (PEM), her thoughts on low-dose naltrexone (LDN) and an overview of the important work being done at the Bateman Horne Center.
Learn more about CFS/ME, MCAS and more at the Bateman Horne Center website: https://batemanhornecenter.org/
Sign up for their upcoming webinar: Severe ME/CFS: Care, Rights and Research
PlayWatch the episode on YouTube, or listen on your favorite podcast platform.PODCAST LINKS
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For Kindra, it’s been a 17 year journey to figure out why she is chronically ill. Her symptoms started around 14 years old, and include not just widespread chronic pain, but also severe fatigue and brain fog. Although the pain is difficult, the fatigue has the most detrimental effect on her functionality. Two years ago she was told she fit the profile of someone with lupus, but this past June the rug was pulled out from under her when she was officially diagnosed with fibromyalgia. She is now going through the process of getting to know herself all over again, while fitting this new diagnosis into her self-image.
In this episode of the Major Pain podcast, Kindra discusses how living with chronic illness has impacted her personal journey. She spent years being gaslit and ignored by doctors, experiencing the depression and loneliness of people not believing or validating her symptoms. Although there is huge relief in finally finding doctors willing to listen, her rheumatologist believes she may also have an autoimmune disease, leaving a sense of unresolved uncertainty hanging over her diagnostic journey. Like many people living with chronic illness Kindra has lost friends who were unwilling to believe or accommodate her symptoms. But she has also found a powerful sense of belonging within the chronic illness community, finding strength in going public with her diagnosis.
Connect with Kindra on TikTok: https://www.tiktok.com/@rin_a_kinkin
PlayWatch the episode on YouTube, or listen on all podcast platforms.PODCAST LINKS
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In 5th grade Billie’s classmates were all evaluated for scoliosis, and she was the one person in her entire class who had it. Scoliosis is a condition in which a person’s spine has an irregular curve, and as Billie got older this condition got worse and worse. Her spine was bent 53 degrees on top and 38 degrees on bottom and she also developed kyphosis, an excessive rounding of the upper back. These two conditions were so severe that Billie’s internal organs were being crushed, forcing her diaphragm upwards into her rib cage and compressing her heart. She was in constant pain and began struggling to breathe.
In this episode of the Major Pain podcast Billie (known online as BillieBillieB AKA ‘The Pyrex Lady’) talks us through her history with scoliosis and kyphosis, including a posterior spinal fusion at 17 years old. Two nine inch rods and 14 screws were surgically installed to straighten her spine, eliminating the kyphosis and improving her spinal curvature from 53 and 38 to 17 and 11. She went under anesthesia at the height of 4’10” and woke up 5’1″. Standing up after surgery was the first time in her whole life that she stood eye to eye with her mother.
Billie discusses the possibility that her scoliosis may be co-morbid with a connective tissue disease called Ehlers-Danlos syndrome. She has always been hypermobile and extremely flexible, and has begun to wonder if a connective tissue disease could explain why her spine developed with such extreme curves. Now that she has undergone spinal fusion, she remains extra flexible everywhere except her spine. Moving forward she will continue to pursue answers regarding EDS, hoping to piece together an inclusive picture of her health journey.
Connect with Billie online: https://billiebillieb.carrd.co/
PlayWatch the episode on YouTube, or listen on all major podcasting platforms.PODCAST LINKS
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When Angela was 25, she was used to physically pushing her body. She was a runner who had always been healthy, besides being suspiciously hypermobile. Then one day at the gym she suddenly became unusually exhausted, and her legs felt like they were on fire. This would kick off a years-long diagnostic odyssey that would see Angela diagnosed with several chronic illness including psoriatic arthritis, psoriasis, small fiber neuropathy, hypermobility and more. That burning in her legs was nerve pain caused by small fiber neuropathy. Discussing this disease, Angela says she has a “special place in my heart for that little monster, it helped me get diagnosed with everything else.”
In this episode of the Major Pain podcast, Angela educates us on psoriatic disease (psoriasis and psoriatic arthritis) while also recounting her diagnostic journey. The quest to diagnose her multiple chronic symptoms involved horrific medical gaslighting, misdiagnoses and mistreatment. But it also highlights the wonder of finding the right doctor, when she found a neurologist willing to also order rheumatology labs when Angela’s own rheumatologist refused to do so. Throughout this process Angela felt internal and external pressure to hide her pain and continue to push through. She discusses the importance of being kind to yourself, self-advocacy and seeking community around chronic illness.
PlayWatch the episode on YouTube, or listen on all major podcasting platforms.PODCAST LINKS
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Maureen has lived through huge health challenges, but her outlook is still one of gratitude. After the passing of her father she has lived every day like it is her last, remembering to laugh and live in the moment. This mindset has helped her navigate a slew of health challenges.
Maureen has been diagnosed with classical Ehlers-Danlos syndrome (CEDS), mast cell activation syndrome (MCAS), postural orthostatic tachychardia syndrome (POTS), fibromyalgia and more. She is currently being evaluated for Charcot-Marie-Tooth (CMT), a hereditary motor and sensory neuropathy of the peripheral nervous system.
In this episode of the Major Pain podcast, Maureen talks us through her health journey so far. Her journey ranges from a spondylolisthesis (spinal vertebra slipping out of place) and a back brace throughout senior year of high school, to years long issues with upper respiratory problems, to a recent brain surgery for hydrocephalus (accumulation of fluid in the brain) and even endometriosis. Maureen now has a shunt surgically implanted in her brain that drains fluid to her stomach. She tells us about going to the Ehlers-Danlos Clinic at the Mayo Clinic, where she learned about the crossover between EDS and fibromyalgia. Through it all, Maureen has cultivated a wealth of knowledge about navigating the medical system, and an incredible attitude of acceptance and perseverance.
PlayWatch the podcast on YouTube, or listen on all major podcasting platforms. PODCAST LINKS
WEBSITE: https://majorpainpodcast.com
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A photo of artist KYRIANNA with her self-portraitKYRIANNA is a watercolor artist based in southern Oregon, who creates striking images that visualize chronic pain and illness. Since these conditions are often invisible, KYRIANNA provides a profound opportunity for her clients to see a representation of their conditions. Her process involves an in-depth interview that she calls a “therapeutic visualization process,” in which she gets to know her clients history and experiences with their condition, while also asking more esoteric questions like, “What color is your pain?” She then translates these answers into realistic portraiture with surrealistic elements layered on top to represent the pain or illness. As you can see from the examples in this article (and on her website KYRIANNA.art) the results are strikingly beautiful and haunting.
Artwork by KYRIANNAIn this episode of the Major Pain podcast, KYRIANNA discusses her artistic process as well as her personal experiences with chronic pain. She lives with a base level of pain every second of every day, mostly in her back, that can flare dramatically and spread throughout her body. Frustratingly, doctors have never been able to pinpoint a cause for her pain. Spinal stenosis (a narrowing of the spinal cord) has been discovered on imaging, but doctors have no idea what might be causing this to occur. KYRIANNA is at a point in her journey where she needs to put down the search for a diagnosis and focus on living in the moment, expressing her journey through her art as a way to both process what she’s experienced and detach from her constant pain.
Artwork by KYRIANNAHear her story in this week’s podcast, and see more of KYRIANNA’s work at KYRIANNA.art
PODCAST LINKS
WEBSITE: https://majorpainpodcast.com
EMAIL: majorpainpodcast@gmail.com
PATREON: https://www.patreon.com/majorpainpodcast
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SOCIAL MEDIA
INSTAGRAM: https://www.instagram.com/majorpainpodcast
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YOUTUBE: https://www.youtube.com/@MajorPainPodcast
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AFFILIATE LINKS
RARE PATIENT VOICE: https://rarepatientvoice.com/MajorPainPodcast
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Nancy Muir’s diagnosis journey has been more difficult than any marathon she has ever run. During her 24th marathon, Nancy began experiencing hip pain that concerned her enough to seek medical care. She was diagnosed with hip dysplasia, a condition where the hip socket doesn’t fully form or cover the head of the femur. Nancy was shocked to receive this diagnosis in her 30s, especially since she works as a pediatric physical therapist and had only encountered hip dysplasia in children.
In this episode of the Major Pain podcast, Nancy shares her knowledge of hip dysplasia from a patient and physical therapist perspective. After her diagnosis, she quickly discovered that hip dysplasia intervention is much more challenging in adults than in children. She initially had a labral repair and periacetabular osteotomies (PAO), which involved making cuts in the pelvis. Although this surgery went well, it began a chain of events that required over a dozen surgeries and monopolized a decade of Nancy’s life. She has had femoral osteotomies, reconstruction of her labrum using cadaver labrum, L5/S1 spinal fusion, and even circled back around to redoing her initial pelvic osteotomies.
Hip dysplasia challenged Nancy to grow and develop in ways that she never expected. While putting her passion for running on hold to recover from surgery after surgery, she felt like she lost a part of her identity. However, this led her to re-examine and redefine her sense of self, bringing new perspective to her work as a pediatric physical therapist. Nancy’s experience with hip dysplasia inspired her to create a patient driven organization called Miles4Hips that educates patients and families about hip conditions and treatment options, and aims to bring the hip community together through meaningful movement. Nancy doesn’t allow hip dysplasia to be a sentence for a lack of movement. Rather, she continues to make strides to overcome in the face of adversity.
Check out Miles4Hips on their website: https://miles4hips.org/
Podcast description by Kait Williams @alignedk8
PODCAST LINKS
WEBSITE: https://majorpainpodcast.com
EMAIL: majorpainpodcast@gmail.com
PATREON: https://www.patreon.com/majorpainpodcast
SUBSCRIBE: https://majorpainpodcast.com/subscribe
SPOTIFY: https://open.spotify.com/show/5NDoD07WJmICdfdRKq0TyN
APPLE PODCASTS: https://podcasts.apple.com/us/podcast/major-pain/id1562947550?mt=2&ls=1
SOCIAL MEDIA
INSTAGRAM: https://www.instagram.com/majorpainpodcast
TIKTOK: https://www.tiktok.com/@majorpainpodcast
YOUTUBE: https://www.youtube.com/@MajorPainPodcast
FACEBOOK: https://www.facebook.com/majorpainpodcast
AFFILIATE LINKS
RARE PATIENT VOICE: https://rarepatientvoice.com/MajorPainPodcast
AMAZON SHOP: https://www.amazon.com/shop/majorpainpodcast
NEURAHEALTH: https://www.neurahealth.co/majorpain
Numbers never made sense to Michelle. She would struggle to follow the steps in a math problem, could not tell time from the face of a clock and could not memorize her multiplication tables. At an early age she was diagnosed as having a learning disability, eventually identified as dyscalculia. This is a condition in which the brain is not wired to process numbers, making it extremely difficult to learn math.
In this episode of the Major Pain podcast, Michelle describes what living with dyscalculia is like while also recounting the challenges of growing up with a little known and poorly understood learning disability. Many aspects of adult life depend on numbers, such as grocery shopping, budgeting, driving and more. All of these activities present unique challenges for Michelle, but over the years she has developed coping mechanisms and adaptations to get by. She has also been diagnosed with visual perception issues and limited hand dexterity. As she puts it, “My brain is just wired differently. So there’s just certain things that I can’t do, or I need to find a different way to do them.”
Growing up with dyscalculia was difficult in many ways. Michelle was bullied throughout school, mocked for her inability to learn math, told she wasn’t smart and assured she would never graduate college. Although Michelle’s intelligence manifested in many other ways (including her passion for writing), there were still times when the relentless bullying made her feel hopeless. However, Michelle eventually proved her detractors wrong by graduating college and becoming a published writer, as well as becoming a paraeducator to help the next generation of children with learning disabilities to flourish. In this podcast interview she shares tips for navigating the world with dyscalculia, discusses the importance of disability accommodations and helps spread awareness of her learning disability.
Check out Michelle’s writing, photography and more on her website: https://www.mrsmichellesmission.com/
PODCAST LINKS
WEBSITE: https://majorpainpodcast.com
EMAIL: majorpainpodcast@gmail.com
PATREON: https://www.patreon.com/majorpainpodcast
SUBSCRIBE: https://majorpainpodcast.com/subscribe
SPOTIFY: https://open.spotify.com/show/5NDoD07WJmICdfdRKq0TyN
APPLE PODCASTS: https://podcasts.apple.com/us/podcast/major-pain/id1562947550?mt=2&ls=1
SOCIAL MEDIA
INSTAGRAM: https://www.instagram.com/majorpainpodcast
TIKTOK: https://www.tiktok.com/@majorpainpodcast
YOUTUBE: https://www.youtube.com/@MajorPainPodcast
FACEBOOK: https://www.facebook.com/majorpainpodcast
AFFILIATE LINKS
RARE PATIENT VOICE: https://rarepatientvoice.com/MajorPainPodcast
AMAZON SHOP: https://www.amazon.com/shop/majorpainpodcast
NEURAHEALTH: https://www.neurahealth.co/majorpain
This week Kevin returns to the Major Pain podcast to catch us up on his health journey. The big news is that he was recently diagnosed with Ménière’s disease, adding one more diagnosis to his already long list. He was also finally approved for disability, and he discusses this process with our host Jesse who also recently won his disability case. They share valuable insights for anyone applying for disability benefits. Kevin also shares how he almost lost an eye due to severe inflammation, and has made huge progress integrating his bipolar diagnosis into his life.
Check out Kevin’s original episode here: https://majorpainpodcast.com/a-diagnosis-from-every-category-ankylosing-spondylitis-vestibular-migraines-bipolar-disorder-and-more/
PODCAST LINKS
WEBSITE: https://majorpainpodcast.com
EMAIL: majorpainpodcast@gmail.com
PATREON: https://www.patreon.com/majorpainpodcast
SUBSCRIBE: https://majorpainpodcast.com/subscribe
SPOTIFY: https://open.spotify.com/show/5NDoD07WJmICdfdRKq0TyN
APPLE PODCASTS: https://podcasts.apple.com/us/podcast/major-pain/id1562947550?mt=2&ls=1
SOCIAL MEDIA
INSTAGRAM: https://www.instagram.com/majorpainpodcast
TIKTOK: https://www.tiktok.com/@majorpainpodcast
YOUTUBE: https://www.youtube.com/@MajorPainPodcast
FACEBOOK: https://www.facebook.com/majorpainpodcast
AFFILIATE LINKS
RARE PATIENT VOICE: https://rarepatientvoice.com/MajorPainPodcast
AMAZON SHOP: https://www.amazon.com/shop/majorpainpodcast
NEURAHEALTH: https://www.neurahealth.co/majorpain
While AK’s peers were shopping for prom dresses and applying to college, she spent senior year self-advocating and undergoing hospitalizations. AK had been diagnosed with juvenile arthritis at 12 years old after experiencing jaw and ankle pain. Subsequently, the flares became increasingly systemic with daily spiking fevers. AK shares how difficult it was for her to communicate to doctors what she was feeling at a young age. As she learned more about her condition, she eventually received the diagnosis of systemic juvenile idiopathic arthritis (SJA), also known as Still’s disease, which causes high spiking fevers, organ inflammation, joint pain, and rashes.
AK details her diagnosis journey and how her symptoms worsened during high school. She shares her experience with infusions, using a wheelchair due to joint contractures, and surgeries to remove bone fragments. Ultimately, her jaw pain became so severe that she couldn’t open her mouth to eat, which led to malnutrition. Further, she was having daily fevers around the same time each day and could hardly get out of bed. As AK grew older, she realized that her doctors were looking at what was on the surface, rather than looking deeper into imaging and why she was experiencing painful symptoms. Through her persistence, she advocated for doctors to find the correct diagnosis and changes in her symptom management.
In this episode of Major Pain podcast, AK emphasizes the joy and appreciation she has found through her diagnosis. Just two years ago, AK was at her lowest point in life. However, after studying her condition and advocating for an accurate diagnosis and treatment avenues, she sees how fulfilling life can be. Now, she is living her dream by studying film production and pursuing adaptive skiing. Though there are moments she cannot relive and will undergo joint replacements in the future, AK continues to find beauty in the present.
Donate to AK’s GoFundMe to help her purchase a sit-ski rig! https://www.gofundme.com/f/help-alexa-ski-again?member=32197051&sharetype=teams
Check out this interview with our host Jesse on the Grants for Creators Substack! https://www.grantsforcreators.com/p/jesse-mercury?publication_id=708860&post_id=146641097&isFreemail=false&r=1q16dp&triedRedirect=true
Podcast description by Kait Williams @alignedk8
PODCAST LINKS
WEBSITE: https://majorpainpodcast.com
EMAIL: majorpainpodcast@gmail.com
PATREON: https://www.patreon.com/majorpainpodcast
SUBSCRIBE: https://majorpainpodcast.com/subscribe
SPOTIFY: https://open.spotify.com/show/5NDoD07WJmICdfdRKq0TyN
APPLE PODCASTS: https://podcasts.apple.com/us/podcast/major-pain/id1562947550?mt=2&ls=1
SOCIAL MEDIA
INSTAGRAM: https://www.instagram.com/majorpainpodcast
TIKTOK: https://www.tiktok.com/@majorpainpodcast
YOUTUBE: https://www.youtube.com/@MajorPainPodcast
FACEBOOK: https://www.facebook.com/majorpainpodcast
AFFILIATE LINKS
RARE PATIENT VOICE: https://rarepatientvoice.com/MajorPainPodcast
AMAZON SHOP: https://www.amazon.com/shop/majorpainpodcast
NEURAHEALTH: https://www.neurahealth.co/majorpain
A few years ago, Ali DiGiacomo was shocked to discover her face on a Daily Mail article called ‘Addicted to being sad: Teenage girls with invisible illnesses – known as ‘Spoonies’ – post TikToks of themselves crying or in hospital to generate thousands of likes – as experts raise concerns over internet-induced wave of mass anxiety.’ Aside from the fact that Ali was not a teenager, they had used her post about self-injecting rheumatoid arthritis medication (which had amassed 15 million views) as proof that spoonies on TikTok were using their illnesses for likes, encouraging each other to lie to doctors to get the diagnoses they wanted and competing to see who was sickest. (We have not linked to the article to avoid driving traffic to this post.) At first, Ali thought the whole thing was a hilarious misappropriation of the truth. That changed when the negative comments started rolling in, disparaging herself and the other chronic illness warriors whose intentions were being defamed.
In this episode of the Major Pain podcast, Ali shares the ups and downs of her chronic illness journey while recounting her reaction to the Daily Mail ordeal. Ali lives with chronic pain from both rheumatoid arthritis and a mysterious nerve pain in her chest, which she describes as “drop to your knees pain” that “feels like a heart attack.” At 31 years old, she has now been in chronic pain for about 10 years. Still, she has managed to travel the world and work as a personal trainer. She describes how chronic illness has shaped every aspect of her life, impacting her work, relationships and identity. Sharing her journey on social media was born from the need to connect with people her age going through something similar, and has resulted in a huge community of spoonies lifting each other up in spite of chronic pain.
Find Ali online at https://www.anotherdaywithra.com/
PODCAST LINKS
WEBSITE: https://majorpainpodcast.com
EMAIL: majorpainpodcast@gmail.com
PATREON: https://www.patreon.com/majorpainpodcast
SUBSCRIBE: https://majorpainpodcast.com/subscribe
SPOTIFY: https://open.spotify.com/show/5NDoD07WJmICdfdRKq0TyN
APPLE PODCASTS: https://podcasts.apple.com/us/podcast/major-pain/id1562947550?mt=2&ls=1
SOCIAL MEDIA
INSTAGRAM: https://www.instagram.com/majorpainpodcast
TIKTOK: https://www.tiktok.com/@majorpainpodcast
YOUTUBE: https://www.youtube.com/@MajorPainPodcast
FACEBOOK: https://www.facebook.com/majorpainpodcast
AFFILIATE LINKS
RARE PATIENT VOICE: https://rarepatientvoice.com/MajorPainPodcast
AMAZON SHOP: https://www.amazon.com/shop/majorpainpodcast
NEURAHEALTH: https://www.neurahealth.co/majorpain
Sunny did not consider her diagnosis as a major pain, but rather a “major inconvenience,” until she realized how affected her daily life was. Since childhood, Sunny battled to stay awake during the day. She experienced sudden waves of drowsiness and her eyelids feeling heavy, which often would not resolve until she went to sleep. Sunny did her best to stay as busy as possible in order to keep alert. Further, other people normalized her symptoms, stating that teenagers are often tired, require extra sleep, and are “checked out.” At one time, Sunny even believed that this was a part of her personality rather than a symptom. However, this condition was affecting Sunny’s participation in social activities, daily life tasks, occasionally her ability to drive safely, and even job interviews. After years of drowsiness, Sunny was diagnosed with hypersomnia: a sleep disorder that causes excessive sleepiness during the day.
Sunny faced a long and cyclical diagnosis journey. As a child, she verbalized her sleepiness to others, but didn’t feel believed. Then as a first-year student in college, people observed her excessive sleepiness, and Sunny felt validated. Sunny was growing increasingly frustrated with having tasks to do but needing to sleep more than others. Therefore, she decided to undergo multiple sleep studies, which came back with insignificant findings. When Sunny was 28 years old, she went to a doctor regarding digestive issues. This doctor not only diagnosed her with SIBO (small intestinal bacterial overgrowth), but sent her to a neurologist due to sleep concerns. She underwent another sleep study, and the doctor determined that she required more sleep than an average adult (hypersomnia). Now, Sunny’s symptoms have improved since her diagnosis and initiating a lifestyle plan that improves her quality and quantity of sleep.
In this episode of the Major Pain podcast, Sunny shares the struggle of living in a world where rest is met with resistance. Despite society’s perception of rest and through her personal healing, Sunny has learned the significance of balancing rest and keeping busy. She affirms how having a diagnosis has helped her and others make sense of what she is experiencing, as well as making lifestyle changes to manage her condition and improving sleep hygiene. Sunny shares insights of the importance of advocating for yourself, showing compassion towards yourself, and resting when you need it. Now, Sunny no longer views hypersomnia as a major disruption nor is she constantly fighting to keep her eyes open. Rather, she is succeeding in navigating her daily activities and making space for all life has to offer.
PODCAST LINKS
WEBSITE: https://majorpainpodcast.com
EMAIL: majorpainpodcast@gmail.com
PATREON: https://www.patreon.com/majorpainpodcast
SUBSCRIBE: https://majorpainpodcast.com/subscribe
SPOTIFY: https://open.spotify.com/show/5NDoD07WJmICdfdRKq0TyN
APPLE PODCASTS: https://podcasts.apple.com/us/podcast/major-pain/id1562947550?mt=2&ls=1
SOCIAL MEDIA
INSTAGRAM: https://www.instagram.com/majorpainpodcast
TIKTOK: https://www.tiktok.com/@majorpainpodcast
YOUTUBE: https://www.youtube.com/@MajorPainPodcast
FACEBOOK: https://www.facebook.com/majorpainpodcast
AFFILIATE LINKS
RARE PATIENT VOICE: https://rarepatientvoice.com/MajorPainPodcast
AMAZON SHOP: https://www.amazon.com/shop/majorpainpodcast
NEURAHEALTH: https://www.neurahealth.co/majorpain
Avery was gearing up for senior year of college when she began to notice painful changes in her body.Her initial symptoms included difficulty sleeping and intense jaw pain. Avery also began to notice growth in her facial features, hands and feet. She thought these changes could be from another growth spurt or from the stress of being a student athlete. Though these changes challenged her self-esteem, especially as a woman in her early 20s, Avery did not realize these symptoms were reasons to consult with a doctor. That is, until her symptoms intensified and the pain in her jaw became unbearable. After three years of symptoms, doctors diagnosed her with acromegaly: a rare disease caused by a tumor on the pituitary gland that pumps out growth hormone.
A self-portrait by podcast guest Avery ToomesAvery’s health journey was full of misdiagnoses, costly interventions, unnecessary sinus surgeries, and painful splinting for her jaw alignment. Though a doctor ordered a head CT scan, the tumor on the pituitary gland was missed which led to jaw and sinus treatments. These surgeries did not resolve her symptoms, and Avery began to lose hope of ever finding answers. Eventually, Avery found a cardiologist who listened to her and referred her to an endocrinologist. As a result, an MRI revealed a three-centimeter tumor on the pituitary gland and blood work revealed high hormone levels. The endocrinologist diagnosed her with acromegaly, and after years of constant pain, doctors performed surgery the following day. Now, just two months after surgery, Avery is almost entirely free from pain.
In this episode of the Major Pain podcast, Avery shares her encounters with doctors, family, and friends who believed her symptoms were “in her head” rather than actual physical symptoms. Being doubted led her to experience self-isolation and feeling as though she was alone in this journey. Avery reveals her struggle with depression and internal blame for her condition. She details her perspective shift from anger at her situation to feeling overwhelmed with support from her loved ones once her tumor was discovered. In her healing, Avery started to look inward to see her beauty and inner strength. Further, Avery shares the importance of advocating for yourself, trusting that your pain is real, and believing in yourself. Now that her acromegaly tumor is removed and is no longer causing bodily growth, Avery is recognizing how this journey has prompted emotional growth in its place.
Subscribe to Avery’s Substack: https://substack.com/@averylaaa
Podcast description by Kait Williams @alignedk8
PODCAST LINKS
WEBSITE: https://majorpainpodcast.com
EMAIL: majorpainpodcast@gmail.com
PATREON: https://www.patreon.com/majorpainpodcast
SUBSCRIBE: https://majorpainpodcast.com/subscribe
SPOTIFY: https://open.spotify.com/show/5NDoD07WJmICdfdRKq0TyN
APPLE PODCASTS: https://podcasts.apple.com/us/podcast/major-pain/id1562947550?mt=2&ls=1
SOCIAL MEDIA
INSTAGRAM: https://www.instagram.com/majorpainpodcast
TIKTOK: https://www.tiktok.com/@majorpainpodcast
YOUTUBE: https://www.youtube.com/@MajorPainPodcast
FACEBOOK: https://www.facebook.com/majorpainpodcast
AFFILIATE LINKS
RARE PATIENT VOICE: https://rarepatientvoice.com/MajorPainPodcast
AMAZON SHOP: https://www.amazon.com/shop/majorpainpodcast
NEURAHEALTH: https://www.neurahealth.co/majorpain
Sydney Anne Bennett lives with functional neurological disorder (FND), which is a condition where the brain doesn’t communicate properly with the nervous system. Sydney’s symptoms include chronic pain, hallucinations, loss of taste, trouble sleeping, hand paralysis, seizures, ataxia, muscle spasms, fatigue, and difficulty using her legs. Consequently, after a year of fighting symptoms and multiple emergency room visits, emergency room doctors referred her to a neurologist who diagnosed her with FND.
Sydney shares her experience with a neurologist who indicated that her symptoms were due to past trauma and that she was “just stressed out.” The neurologist referred her to a psychiatrist and canceled further imaging despite finding unusual white matter in her brain. Following her own research on functional neurological disorder, she recognized that FND is not simply a stress response. Rather, FND is a real disease indicative of dysfunction in the connection between the brain and the nervous system. Moreover, Sydney consulted with a different neurologist. The neurologist also confirmed the FND diagnosis after a detailed workup with brain and spine scans and ruled out multiple sclerosis. Sydney accepted the condition and worked on symptom management once she recognized that this diagnosis wasn’t in her head or brought upon herself.
In this episode of the Major Pain podcast, Sydney discusses her chronic illness journey with functional neurological disorder as a new mother. She shares her initial insecurity and then acceptance of using mobility aids to navigate her symptoms and to improve quality of life. Further, she reveals her process of gaining confidence by changing her mindset about disability. On social media, Sydney has become an advocate for people with FND. Additionally, she has found connection and community, and works to break the stigma of FND, disabilities, and mobility aids. Through confidence and faith, Sydney is making the best of her journey with FND.
Connect with Sydney Anne Bennett on her website: https://sydneyannebennett.com/
Podcast description by Kait Williams @alignedk8
PODCAST LINKS
WEBSITE: https://majorpainpodcast.com
EMAIL: majorpainpodcast@gmail.com
PATREON: https://www.patreon.com/majorpainpodcast
SUBSCRIBE: https://majorpainpodcast.com/subscribe
SPOTIFY: https://open.spotify.com/show/5NDoD07WJmICdfdRKq0TyN
APPLE PODCASTS: https://podcasts.apple.com/us/podcast/major-pain/id1562947550?mt=2&ls=1
SOCIAL MEDIA
INSTAGRAM: https://www.instagram.com/majorpainpodcast
TIKTOK: https://www.tiktok.com/@majorpainpodcast
YOUTUBE: https://www.youtube.com/@MajorPainPodcast
FACEBOOK: https://www.facebook.com/majorpainpodcast
AFFILIATE LINKS
RARE PATIENT VOICE: https://rarepatientvoice.com/MajorPainPodcast
AMAZON SHOP: https://www.amazon.com/shop/majorpainpodcast
NEURAHEALTH: https://www.neurahealth.co/majorpain
Kyle Ayers is a well-known comedian, famous for his podcast ‘Never Seen It‘ in which comedians re-write a scene from a show or movie they’ve never seen. Kyle is also living with a severe chronic pain condition called trigeminal neuralgia. When he was first diagnosed with this condition he was initially happy, having finally found an explanation for the severe right temple pain that had been plaguing him for the past three years, a pain that had confounded doctor after doctor. But when Kyle began to research trigeminal neuralgia and discovered that people online were calling it the ‘suicide disease,’ his relief at getting a diagnosis was short-lived.
Doctors don’t know what triggers the trigeminal nerve in the face to start jumping around, causing the electric shock-like sensations that are typical in trigeminal neuralgia. Unfortunately, when this condition is triggered it is remarkably difficult to manage. There is a procedure called microvascular decompression that can be helpful, but as Kyle learned first-hand this relief can be temporary.
In this episode of the Major Pain podcast, Kyle talks us through his journey with trigeminal neuralgia. He discusses the difficulty in getting a diagnosis, his experience with microvascular decompression and the medications he has tried. One of his coping mechanisms is performing comedy, and he has recently been working on a new stand-up show that centers around his experiences with trigeminal neuralgia, which he will be performing at the 2024 Edinburgh Fringe Festival.
Check out Kyle’s podcast and other work on his website: http://kyleayers.com/
PODCAST LINKS
WEBSITE: https://majorpainpodcast.com
EMAIL: majorpainpodcast@gmail.com
PATREON: https://www.patreon.com/majorpainpodcast
SUBSCRIBE: https://majorpainpodcast.com/subscribe
SPOTIFY: https://open.spotify.com/show/5NDoD07WJmICdfdRKq0TyN
APPLE PODCASTS: https://podcasts.apple.com/us/podcast/major-pain/id1562947550?mt=2&ls=1
SOCIAL MEDIA
INSTAGRAM: https://www.instagram.com/majorpainpodcast
TIKTOK: https://www.tiktok.com/@majorpainpodcast
YOUTUBE: https://www.youtube.com/@MajorPainPodcast
FACEBOOK: https://www.facebook.com/majorpainpodcast
AFFILIATE LINKS
RARE PATIENT VOICE: https://rarepatientvoice.com/MajorPainPodcast
AMAZON SHOP: https://www.amazon.com/shop/majorpainpodcast
NEURAHEALTH: https://www.neurahealth.co/majorpain
Rho has a self-described laundry list of diagnoses, and she has had to fight for every single one. Her list includes autism, ADHD, bipolar 2, CPTSD, excoriation disorder, keratoconus, IBS, GERD, chronic kidney disease, tactile allodynia and chronic pain. Along the way she faced constant medical gaslighting and dehumanizing treatment, with doctors more likely to brush her off than provide appropriate care, and a lack of support from her family. Of her journey to uncover these many diagnoses, Rho says, “It’s been a long difficult fight to get to where I am now. I’m pretty proud of where I’ve gotten.”
In this episode of the Major Pain podcast, Rho walks us through her chronic illness journey while defining her rare illnesses like allodynia and keratoconus. Her chronic pain remains a frustrating mystery, since doctors have yet to pin down a cause or provide relief. The pain is focused in her extremities, particularly her hands and traveling from her hips to her knees. Rho wonders whether there may be an underlying cause yet to be found that may shine a light on her situation. While pursuing answers she is also fighting to get on disability, which is another uphill battle. She discusses how chronic illness has touched every corner of her life, reflecting on the good and the bad that has come from these health challenges.
Rho also tells us about her work with Mask Bloc Seattle, a mutual aid organization providing respirators and masks to people in need. Learn more: https://linktr.ee/maskblocseattle
Host of Major Pain Jesse Mercury has just released his synthpop album ‘SciFi’ on all major streaming platforms! The album features his song ‘Time Machine,’ which you may recognize as the theme music from Major Pain. Click here to listen: https://tr.ee/t-TPmnAIRh
PODCAST LINKS
WEBSITE: https://majorpainpodcast.com
EMAIL: majorpainpodcast@gmail.com
PATREON: https://www.patreon.com/majorpainpodcast
SUBSCRIBE: https://majorpainpodcast.com/subscribe
SPOTIFY: https://open.spotify.com/show/5NDoD07WJmICdfdRKq0TyN
APPLE PODCASTS: https://podcasts.apple.com/us/podcast/major-pain/id1562947550?mt=2&ls=1
SOCIAL MEDIA
INSTAGRAM: https://www.instagram.com/majorpainpodcast
TIKTOK: https://www.tiktok.com/@majorpainpodcast
YOUTUBE: https://www.youtube.com/@MajorPainPodcast
FACEBOOK: https://www.facebook.com/majorpainpodcast
AFFILIATE LINKS
RARE PATIENT VOICE: https://rarepatientvoice.com/MajorPainPodcast
AMAZON SHOP: https://www.amazon.com/shop/majorpainpodcast
NEURAHEALTH: https://www.neurahealth.co/majorpain
This week on the Major Pain podcast we speak with Diane Strand, founder of the nonprofit JDS Creative Academy, which offers training and job placement in the entertainment industry to people with disabilities. JDS caters to individuals with a passion for creativity who hope to turn this passion into a career. Diane has created a unique job placement program, finding internships for her students while providing a salary and job coach for the first year of employment, in the hopes that these employers will retain JDS students indefinitely. The JDS Creative Academy also works to foster inclusivity, and train employers about the adaptive needs of their students.
In this podcast interview Diane will tell us about her organization and her vision to bring programs like the JDS Creative Academy to communities everywhere. She tells us about the film, TV, radio and stage productions her students are involved in. She also reflects on the importance of the arts, and the impact of arts education on the students her program has served.
Diane Strand is an award-winning Executive Producer at JDS Studios and the TV show Spirit of Innovation, the first Riverside County local news and information program. She is the majority owner of JDS Video & Media Productions, Inc / JDS Actors Studio and the founder of nonprofit JDS Creative Academy, she is also a published author who talks about entrepreneurship, and providing pathways for career opportunities in the visual, performing and digital arts.
Learn more about the JDS Creative Academy: https://jdscreativeacademy.org/
PODCAST LINKS
WEBSITE: https://majorpainpodcast.com
EMAIL: majorpainpodcast@gmail.com
PATREON: https://www.patreon.com/majorpainpodcast
SUBSCRIBE: https://majorpainpodcast.com/subscribe
SPOTIFY: https://open.spotify.com/show/5NDoD07WJmICdfdRKq0TyN
APPLE PODCASTS: https://podcasts.apple.com/us/podcast/major-pain/id1562947550?mt=2&ls=1
SOCIAL MEDIA
INSTAGRAM: https://www.instagram.com/majorpainpodcast
TIKTOK: https://www.tiktok.com/@majorpainpodcast
YOUTUBE: https://www.youtube.com/@MajorPainPodcast
FACEBOOK: https://www.facebook.com/majorpainpodcast
AFFILIATE LINKS
RARE PATIENT VOICE: https://rarepatientvoice.com/MajorPainPodcast
AMAZON SHOP: https://www.amazon.com/shop/majorpainpodcast
NEURAHEALTH: https://www.neurahealth.co/majorpain
Cianna has been a dancer her whole life, saying “as soon as I could walk I was dancing.” Over the past few years chronic illness has altered her life’s course, and frustratingly taken her away from dance. While it has been difficult to leave her life’s passion behind, Cianna has learned to cultivate gratitude for the things she is still able to do, while redirecting her path in new directions.
Cianna’s health journey began at 15 years old when she underwent multiple surgeries for hip dysplasia. A few years later she discovered she has a type 1 Chiari malformation in her brain, which would eventually require decompression surgery in which doctors removed a piece of her skull. She has also had to fuse her skull to her C3 vertebrae to combat craniocervical instability, and been diagnosed with the connective tissue disease hypermobile Ehlers-Danlos syndrome.
In this episode of the Major Pain podcast, Cianna talks us through her health journey while teaching us about her rare conditions. She discusses the complexity of having to leave dance behind, and the deep frustrations of seeking help from doctors who wouldn’t believe her symptoms were real. However, she also acknowledges that good things have come from her challenges, including an enhanced sense of gratitude and newfound passion for helping others in similar situations.
Connect with Cianna on Instagram @CiannasJourney
PODCAST LINKS
WEBSITE: https://majorpainpodcast.com
EMAIL: majorpainpodcast@gmail.com
PATREON: https://www.patreon.com/majorpainpodcast
SUBSCRIBE: https://majorpainpodcast.com/subscribe
SPOTIFY: https://open.spotify.com/show/5NDoD07WJmICdfdRKq0TyN
APPLE PODCASTS: https://podcasts.apple.com/us/podcast/major-pain/id1562947550?mt=2&ls=1
SOCIAL MEDIA
INSTAGRAM: https://www.instagram.com/majorpainpodcast
TIKTOK: https://www.tiktok.com/@majorpainpodcast
YOUTUBE: https://www.youtube.com/@MajorPainPodcast
FACEBOOK: https://www.facebook.com/majorpainpodcast
AFFILIATE LINKS
RARE PATIENT VOICE: https://rarepatientvoice.com/MajorPainPodcast
AMAZON SHOP: https://www.amazon.com/shop/majorpainpodcast
NEURAHEALTH: https://www.neurahealth.co/majorpain
Kenny Alhadeff first appeared on the Major Pain podcast 3 years ago, sharing his experiences living in recovery from drug addiction and alcoholism. This year Kenny will celebrate his 40th year of sobriety. Since first appearing on the show Kenny has experienced the most intense chronic pain of his life, been diagnosed with ADHD in his mid 70s and developed a rare condition called polymyalgia rheumatica. Today he returns to the podcast to update us on his health journey.
Polymyalgia rheumatica is a chronic pain condition affecting approximately 50 out of every 100,000 Americans, generally over the age of 50. When Kenny first started to develop symptoms of aching all over, he thought it was due to aging. But when he developed severe swelling in his hands and could no longer hold a golf club, he began to suspect something more was at work. He was soon diagnosed with both polymyalgia rheumatica and rheumatoid arthritis.
On this episode of Major Pain, Kenny talks us through his new diagnoses and the treatment plans he is utilizing. Along with sharing his updates, Kenny and podcast host Jesse discuss how Jesse’s chronic illness has impacted their relationship. Kenny is the father to Andi, Jesse’s fiancee. During the first 6 years of Jesse and Andi’s relationship, Jesse’s health was severely impacted by his then mystery illness. This led to a critical misunderstanding between Jesse and Kenny about the potential future of his relationship to Andi. Thankfully this misunderstanding was discovered and resolved, and this podcast recording provided a unique opportunity to share how chronic illness can impact a family circle.
PODCAST LINKS
WEBSITE: https://majorpainpodcast.com
EMAIL: majorpainpodcast@gmail.com
PATREON: https://www.patreon.com/majorpainpodcast
SUBSCRIBE: https://majorpainpodcast.com/subscribe
SPOTIFY: https://open.spotify.com/show/5NDoD07WJmICdfdRKq0TyN
APPLE PODCASTS: https://podcasts.apple.com/us/podcast/major-pain/id1562947550?mt=2&ls=1
SOCIAL MEDIA
INSTAGRAM: https://www.instagram.com/majorpainpodcast
TIKTOK: https://www.tiktok.com/@majorpainpodcast
YOUTUBE: https://www.youtube.com/@MajorPainPodcast
FACEBOOK: https://www.facebook.com/majorpainpodcast
AFFILIATE LINKS
RARE PATIENT VOICE: https://rarepatientvoice.com/MajorPainPodcast
AMAZON SHOP: https://www.amazon.com/shop/majorpainpodcast
NEURAHEALTH: https://www.neurahealth.co/majorpain
This week on the Major Pain podcast we are joined by NYU Professors and psychoanalysts Dr. Avgi Saketopoulou and Ann Pellegrini to discuss the intersection of trauma and gender, as discussed in their book Gender Without Identity. They propose a new theory of gender development, that gender is something all people develop in relationship to trauma, rather than an intrinsic identity we are born with. Their book seeks to shed light on the complex tapestry of experiences that shape one’s gender expression and perception.
Dr. Avgi Saketopoulou is a psychoanalyst in private practice in NYC and a member of the faculty at the NYU Postdoctoral Program in Psychotherapy and Psychoanalysis. She is the author of Sexuality Beyond Consent: Risk, Race, Traumatophilia from the Sexual Cultures Series (NYU Press). Visit her website at https://www.avgisaketopoulou.com/
Ann Pellegrini is Professor of Performance Studies & Social and Cultural Analysis at New York University, and a psychoanalyst in private practice in New York City. Their previous books include Performance Anxieties: Staging Psychoanalysis, Staging Race (Routledge, 1997) and the 2014 Lambda Finalist in Best LGBT Non-Fiction You Can Tell Just by Looking and 20 Other Myths About LGBT Life and People, coauthored with Michael Bronski and Michael Amico (Beacon Press, 2013). Find them online at https://annpellegrini.com
PODCAST LINKS
WEBSITE: https://majorpainpodcast.com
EMAIL: majorpainpodcast@gmail.com
PATREON: https://www.patreon.com/majorpainpodcast
SUBSCRIBE: https://majorpainpodcast.com/subscribe
SPOTIFY: https://open.spotify.com/show/5NDoD07WJmICdfdRKq0TyN
APPLE PODCASTS: https://podcasts.apple.com/us/podcast/major-pain/id1562947550?mt=2&ls=1
SOCIAL MEDIA
INSTAGRAM: https://www.instagram.com/majorpainpodcast
TIKTOK: https://www.tiktok.com/@majorpainpodcast
YOUTUBE: https://www.youtube.com/@MajorPainPodcast
FACEBOOK: https://www.facebook.com/majorpainpodcast
AFFILIATE LINKS
RARE PATIENT VOICE: https://rarepatientvoice.com/MajorPainPodcast
AMAZON SHOP: https://www.amazon.com/shop/majorpainpodcast
NEURAHEALTH: https://www.neurahealth.co/majorpain
Jamie is a social media chronic illness advocate under the handle @LoveWarriorHugs, but her advocacy extends beyond social media. She is an epilepsy ambassador with the National Epilepsy Foundation, and she’s also been involved in successfully lobbying to change pain management laws in Illinois. Her passion for advocacy stems from her own experience living with five chronic illnesses, asthma, epilepsy, multiple sclerosis, trigeminal neuralgia and IBS.
On this episode of the Major Pain podcast, Jamie discusses her chronic illness journey. The illness that currently affects her the most is trigeminal neuralgia (TN), which causes daily facial pain. Jamie walks us through how this disease works, the many treatments she has attempted and the link between TN and MS. She discusses how her diagnoses have interwoven with her life, including the difficulty of balancing chronic illness with motherhood and how her passion for advocacy was sparked.
PODCAST LINKS
WEBSITE: https://majorpainpodcast.com
EMAIL: majorpainpodcast@gmail.com
PATREON: https://www.patreon.com/majorpainpodcast
SUBSCRIBE: https://majorpainpodcast.com/subscribe
SPOTIFY: https://open.spotify.com/show/5NDoD07WJmICdfdRKq0TyN
APPLE PODCASTS: https://podcasts.apple.com/us/podcast/major-pain/id1562947550?mt=2&ls=1
SOCIAL MEDIA
INSTAGRAM: https://www.instagram.com/majorpainpodcast
TIKTOK: https://www.tiktok.com/@majorpainpodcast
YOUTUBE: https://www.youtube.com/@MajorPainPodcast
FACEBOOK: https://www.facebook.com/majorpainpodcast
AFFILIATE LINKS
RARE PATIENT VOICE: https://rarepatientvoice.com/MajorPainPodcast
AMAZON SHOP: https://www.amazon.com/shop/majorpainpodcast
NEURAHEALTH: https://www.neurahealth.co/majorpain
Rasheera Dopson, host of the Womanhood & Disability podcast, is an accomplished author, public speaker and advocate spreading her messages of justice, disability empowerment and awareness. She came by this work through her own experience living with two rare syndromes, both caused by her being born about 5 months premature. It took over 100 surgeries to fill in the gaps where Rasheera’s body was underdeveloped at birth.
Rasheera’s rare conditions are both visible and invisible. Her visible diagnosis is a craniofacial condition called Goldenhar, which involves the right side of her face being underdeveloped. She was born without a right jaw bone, and has had around 30 reconstructive surgeries on her jaw alone. The invisible condition is called VATER syndrome, which is a group of growth abnormalities affecting a fetus in early development. VATER is an acronym for the body parts that can be affected by this condition, vertebrae, anus, trachea, esophagus and renal (kidney). The heart and limbs can also be affected.
In this episode of the Major Pain podcast, Rasheera talks us through her journey from patient to activist. She discusses the unique challenges faced at different periods in her life, first enduring countless surgeries as a child and teenager, and then finding her place in the world as a young adult. She teaches us about her rare diseases, and discusses the road that led to her activism and advocacy work.
Connect with Rasheera on Instagram @RasheeraDopson
PODCAST LINKS
WEBSITE: https://majorpainpodcast.com
EMAIL: majorpainpodcast@gmail.com
PATREON: https://www.patreon.com/majorpainpodcast
SUBSCRIBE: https://majorpainpodcast.com/subscribe
SPOTIFY: https://open.spotify.com/show/5NDoD07WJmICdfdRKq0TyN
APPLE PODCASTS: https://podcasts.apple.com/us/podcast/major-pain/id1562947550?mt=2&ls=1
SOCIAL MEDIA
INSTAGRAM: https://www.instagram.com/majorpainpodcast
TIKTOK: https://www.tiktok.com/@majorpainpodcast
YOUTUBE: https://www.youtube.com/@MajorPainPodcast
FACEBOOK: https://www.facebook.com/majorpainpodcast
AFFILIATE LINKS
RARE PATIENT VOICE: https://rarepatientvoice.com/MajorPainPodcast
AMAZON SHOP: https://www.amazon.com/shop/majorpainpodcast
NEURAHEALTH: https://www.neurahealth.co/majorpain
We’re kicking off the fourth season of Major Pain by catching up with previous guests! Michelle and Bek both have new diagnoses that are recontextualizing their journeys, while Simon is feeling completely cured.
As Major Pain enters its fourth season, now is a great time to support the show on Patreon! Subscribe for monthly bonus episodes, special recognition and gifts when you sign up. Learn more at https://www.patreon.com/majorpainpodcast
PODCAST LINKS
WEBSITE: https://majorpainpodcast.com
EMAIL: majorpainpodcast@gmail.com
PATREON: https://www.patreon.com/majorpainpodcast
SUBSCRIBE: https://majorpainpodcast.com/subscribe
SPOTIFY: https://open.spotify.com/show/5NDoD07WJmICdfdRKq0TyN
APPLE PODCASTS: https://podcasts.apple.com/us/podcast/major-pain/id1562947550?mt=2&ls=1
SOCIAL MEDIA
INSTAGRAM: https://www.instagram.com/majorpainpodcast
TIKTOK: https://www.tiktok.com/@majorpainpodcast
YOUTUBE: https://www.youtube.com/@MajorPainPodcast
FACEBOOK: https://www.facebook.com/majorpainpodcast
AFFILIATE LINKS
RARE PATIENT VOICE: https://rarepatientvoice.com/MajorPainPodcast
AMAZON SHOP: https://www.amazon.com/shop/majorpainpodcast
NEURAHEALTH: https://www.neurahealth.co/majorpain
Kait lives with miserable malalignment syndrome, which means that the bones in her legs are rotated abnormally. Since childhood her femurs were pointed inwards while her tibias rotated outwards, causing her knees to face each other. Even though this rotation was plainly visible to the naked eye, it still took decades for Kait’s condition to be diagnosed.
Not much is known about miserable malalignment syndrome. It’s possible Kait’s condition was caused by a birth defect or by a genetic predisposition. She first noticed her legs looked different than her classmates at 13 years old, which is around the time she started experiencing chronic pain in her hips, knees and ankles. Kait’s passion for jogging led these pains to worsen over the years. In her early 20s she was in so much pain that she struggled to do basic tasks like getting in and out of the shower or putting on pants. That’s when she finally began to seek help.
In this episode of the Major Pain podcast, Kait discusses her journey with miserable malalignment syndrome, including finally being diagnosed at 27 years old. After a lifetime of being told her issues were her own fault and that she just needed to strengthen her joints, she found a specialist who took one look at the way she was sitting and knew immediately she had malalignment. She chronicles the many surgeries she has undergone, first to correct repeated labral tears (the labrum is the cartilage that surrounds the joints) and eventually to correct the rotation of her femurs and tibias. These surgeries are called osteotomies, and involve breaking, rotating and resetting the major leg bones. The alignment of one leg has been completely corrected, and she will soon repeat the process for the other leg. Kait is already noticing a huge reduction in pain in the corrected leg, and is very optimistic she will be able to return to jogging once her second leg is corrected.
Connect with Kait on Instagram @alignedk8, or read an article about her story here: https://miles4hips.org/kaitlyns-story
PODCAST LINKS
WEBSITE: https://majorpainpodcast.com
EMAIL: majorpainpodcast@gmail.com
PATREON: https://www.patreon.com/majorpainpodcast
SUBSCRIBE: https://majorpainpodcast.com/subscribe
SPOTIFY: https://open.spotify.com/show/5NDoD07WJmICdfdRKq0TyN
APPLE PODCASTS: https://podcasts.apple.com/us/podcast/major-pain/id1562947550?mt=2&ls=1
SOCIAL MEDIA
INSTAGRAM: https://www.instagram.com/majorpainpodcast
TIKTOK: https://www.tiktok.com/@majorpainpodcast
YOUTUBE: https://www.youtube.com/@MajorPainPodcast
FACEBOOK: https://www.facebook.com/majorpainpodcast
AFFILIATE LINKS
RARE PATIENT VOICE: https://rarepatientvoice.com/MajorPainPodcast
AMAZON SHOP: https://www.amazon.com/shop/majorpainpodcast
NEURAHEALTH: https://www.neurahealth.co/majorpain
Drawing by podcast guest Colby.Colby has 11 chronic illness and mental health diagnoses. These include chronic pain (currently diagnosed as fibromyalgia), PCOS (polycystic ovarian syndrome), asthma, IBS, eczema, PTSD, depression, anxiety, bipolar, ADHD and somatic symptom disorder. That last diagnosis might be the least well-known of Colby’s illnesses. According to psychiatry.org, “somatic symptom disorder is diagnosed when a person has a significant focus on physical symptoms, such as pain, weakness or shortness of breath, to a level that results in major distress and/or problems functioning.” For Colby, that means that thinking about their physical symptoms can make that symptom worse.
Colby has amassed a toolbox they use to manage somatic symptom disorder and their other diagnoses. They say, “It’s very much…training your brain to think the way you want it to. It’s still very overwhelming, just because I already have all these symptoms, I have all these disorders, I have all these medications to take care of, and then I have to make sure that doctors are talking to other doctors that are talking to my psychiatrist that are talking to my counselor.” To keep up with this complicated situation, Colby keeps a chronic illness notebook. This helps not only to keep things straight in future doctors visits, but also to get the information out of their brain when it is put on paper to focus on other things.
In this episode of the Major Pain podcast, Colby discusses their multitude of chronic illnesses and how these diagnoses interact with somatic symptom disorder. They share the history of how this situation developed, including thinking it was normal to be in extreme pain every day throughout childhood. Colby feels there may be an underlying condition like a connective tissue disease that has yet to be discovered, but works hard to quell thoughts of health uncertainty. Colby also discusses the passions and past-times that help them power through, like writing fan fiction and playing video games.
Connect with Colby online at https://linktr.ee/mergoatink
PODCAST LINKS
WEBSITE: https://majorpainpodcast.com
EMAIL: majorpainpodcast@gmail.com
PATREON: https://www.patreon.com/majorpainpodcast
SUBSCRIBE: https://majorpainpodcast.com/subscribe
SPOTIFY: https://open.spotify.com/show/5NDoD07WJmICdfdRKq0TyN
APPLE PODCASTS: https://podcasts.apple.com/us/podcast/major-pain/id1562947550?mt=2&ls=1
SOCIAL MEDIA
INSTAGRAM: https://www.instagram.com/majorpainpodcast
TIKTOK: https://www.tiktok.com/@majorpainpodcast
YOUTUBE: https://www.youtube.com/@MajorPainPodcast
FACEBOOK: https://www.facebook.com/majorpainpodcast
AFFILIATE LINKS
RARE PATIENT VOICE: https://rarepatientvoice.com/MajorPainPodcast
AMAZON SHOP: https://www.amazon.com/shop/majorpainpodcast
NEURAHEALTH: https://www.neurahealth.co/majorpain
DeAnna Pursai and her sister Angel describe themselves as a package deal. A foundational experience growing up in rural Indiana was when DeAnna went off to college, but Angel was left behind due to her disability. After age 22, adults with disabilities age out of national education programs in the US. This was devastating for Angel, who’s only option was to attend a day program that was more like a nursing home than a college experience. The bullying Angel experienced at this day program caused trauma that still haunts her. DeAnna lived these experiences vicariously through her sister, and made it her mission to provide ongoing education to adults with disabilities.
DeAnna co-founded the College of Adaptive Arts with Dr. Pamela Lindsay, which is now in its 15th year of operation. This college provides an equitable, lifelong college experience to adults of all abilities who historically haven’t had access to college education. CAA offers 1-hour classes in 10 schools of study including visual arts, business, communication, science, technology and more, both online and in-person at their campus in Saratoga, CA. Students need only a desire to learn to earn full credit. While they do graduate and receive a diploma, students are encouraged to re-enroll and keep learning as long as they have interest.
In this episode of the Major Pain podcast we sit down with DeAnna and Angel to learn about the College of Adaptive Arts. Angel shares what it felt like to be left behind when her sister went off to college, and her pride that she has helped create this path to continued education. Angel’s favorite classes are adaptive guitar, computers and clay animation, and she even shares some freestyle rapping. DeAnna discusses the history of CAA, and how Angel has been her inspiration. Her vision for the future is to apply this teaching model as a layer of education at all college campuses, building a global infrastructure of lifelong learning for adults who traditionally haven’t had access.
Learn more about the College of Adaptive Arts or donate to support this program at https://www.collegeofadaptivearts.org/
PODCAST LINKS
WEBSITE: https://majorpainpodcast.com
EMAIL: majorpainpodcast@gmail.com
PATREON: https://www.patreon.com/majorpainpodcast
SUBSCRIBE: https://majorpainpodcast.com/subscribe
SPOTIFY: https://open.spotify.com/show/5NDoD07WJmICdfdRKq0TyN
APPLE PODCASTS: https://podcasts.apple.com/us/podcast/major-pain/id1562947550?mt=2&ls=1
SOCIAL MEDIA
INSTAGRAM: https://www.instagram.com/majorpainpodcast
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YOUTUBE: https://www.youtube.com/@MajorPainPodcast
FACEBOOK: https://www.facebook.com/majorpainpodcast
AFFILIATE LINKS
RARE PATIENT VOICE: https://rarepatientvoice.com/MajorPainPodcast
AMAZON SHOP: https://www.amazon.com/shop/majorpainpodcast
NEURAHEALTH: https://www.neurahealth.co/majorpain
Like many babies born with transposition of the great arteries, Amelia was born blue. Her blood was not circulating to her entire body because the two main arteries leading blood away from her heart were switched, sending blood in the wrong direction. She was immediately helicoptered to a larger hospital to undergo surgery to restore blood flow. Over 30 years later, Amelia is still managing the side effects of her congenital birth defect.
On this episode of the Major Pain podcast, Amelia discusses living with transposition of the great arteries. In 1988 the prevailing corrective surgery was called a Mustard procedure, which restores oxygenated blood to the whole body. Babies born today will have a different procedure that switches the great arteries to flow normally. That makes Amelia’s heart exceptionally rare, since there aren’t many patients her age who underwent a Mustard procedure. In high school her doctors wanted to perform the switch surgery, and put a band on Amelia’s heart to strengthen it in preparation. Unfortunately, this band caused more harm than good, eventually calcifying and limiting her blood flow before it was removed 15 years later without having the switch surgery done.
During the years when Amelia’s blood flow was limited she was constantly exhausted and her hands were often blue, but her doctors brushed off her complaints as normal for someone with a congenital heart defect. This added to the compounding medical trauma of her many surgeries (including three open heart procedures), eventually leading to a diagnosis of complex post-traumatic stress disorder (CPTSD). As an adult, Amelia was also diagnosed with autism, endometriosis and obsessive-compulsive disorder (OCD). Finally receiving these diagnoses has been deeply affirming, opening the door to better Amelia’s understanding of self.
Listen to Amelia’s amazing story on this podcast episode! You can connect with her online at https://lnk.bio/Ameliablackwater
Our host Jesse and his longtime partner Andi just got engaged! They tell the story on this month’s bonus episode over on Patreon. Head to https://www.patreon.com/majorpainpodcast to gain access to the bonus podcast when you subscribe to support the creation of Major Pain.
PODCAST LINKS
WEBSITE: https://majorpainpodcast.com
EMAIL: majorpainpodcast@gmail.com
PATREON: https://www.patreon.com/majorpainpodcast
SUBSCRIBE: https://majorpainpodcast.com/subscribe
SPOTIFY: https://open.spotify.com/show/5NDoD07WJmICdfdRKq0TyN
APPLE PODCASTS: https://podcasts.apple.com/us/podcast/major-pain/id1562947550?mt=2&ls=1
SOCIAL MEDIA
INSTAGRAM: https://www.instagram.com/majorpainpodcast
TIKTOK: https://www.tiktok.com/@majorpainpodcast
YOUTUBE: https://www.youtube.com/@MajorPainPodcast
FACEBOOK: https://www.facebook.com/majorpainpodcast
AFFILIATE LINKS
RARE PATIENT VOICE: https://rarepatientvoice.com/MajorPainPodcast
AMAZON SHOP: https://www.amazon.com/shop/majorpainpodcast
NEURAHEALTH: https://www.neurahealth.co/majorpain
MaKenzie has received a slew of chronic pain and chronic illness diagnoses over the years, including Chiari malformation, lupus, Sjogren’s disease and Hashimoto’s syndrome, but she isn’t focused on her diagnoses. She’s focused on managing the daily impact of her symptoms and the emotional toll this journey has taken. She says, “The damage of living a life like that for the better part of 15 years takes a toll on you mentally, emotionally, spiritually, physically, it’s been a long, long road.”
In this episode of the Major Pain podcast, MaKenzie walks us through her journey and the recent changes that have allowed her to begin healing. She tells us about receiving brain surgery at 21 years old for a severe Chiari malformation that was pushing her cerebellum down 32mm. She also discusses the rheumatologist who didn’t read her chart to realize she’d tested positive for lupus, and how her faith and parenting has been tested by this journey. Thankfully, MaKenzie is now in the hands of a functional medicine team that is finally helping her to heal. Her experiences have pushed her to become a social media advocate for other chronic illness and chronic pain patients.
Connect with MaKenzie online here: https://stan.store/hopeforhealingwithmakenzie
PODCAST LINKS
WEBSITE: https://majorpainpodcast.com
EMAIL: majorpainpodcast@gmail.com
PATREON: https://www.patreon.com/majorpainpodcast
SUBSCRIBE: https://majorpainpodcast.com/subscribe
SPOTIFY: https://open.spotify.com/show/5NDoD07WJmICdfdRKq0TyN
APPLE PODCASTS: https://podcasts.apple.com/us/podcast/major-pain/id1562947550?mt=2&ls=1
SOCIAL MEDIA
INSTAGRAM: https://www.instagram.com/majorpainpodcast
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YOUTUBE: https://www.youtube.com/@MajorPainPodcast
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AFFILIATE LINKS
RARE PATIENT VOICE: https://rarepatientvoice.com/MajorPainPodcast
AMAZON SHOP: https://www.amazon.com/shop/majorpainpodcast
NEURAHEALTH: https://www.neurahealth.co/majorpain
For Meresa, one of the hardest parts of living with mast cell activation syndrome (MCAS) is the daily uncertainty. She says, “It’s still such an everyday variable disease. It really sucks a lot of the time. It’s really painful. People don’t understand what it is, they don’t always understand what you’re dealing with. You could look totally normal and feel miserable.”
Mast cells play a vital part in the immune system. They release chemical mediators into the blood stream when the body is exposed to allergens. In fact, there are over 1000 mediators that mast cells can produce, including histamine and tryptase. But in mast cell activation syndrome, these cells overreact to a wide variety of stressors and can cause severe and systemic health problems. It can be extremely difficult to diagnose and treat due to the diverse individuality of how it affects people.
Meresa was lucky to have an MCAS literate doctor who diagnosed her very quickly after her health issues began, but almost a decade later she is still struggling to manage her MCAS flares. She experiences joint and nerve pain on top of severe allergic symptoms, and has been to the ER several times for anaphylactic episodes.
In this episode of the Major Pain podcast, Meresa talks with podcast host Jesse Mercury who also has MCAS. They commiserate over their shared illness, comparing and contrasting not only their lived experiences but also their medication regiments, both prescription and naturopathic. Living with a disease like MCAS can be extremely isolating, but hopefully listening to this conversation can help others going through something similar to feel less alone.
PODCAST LINKS
WEBSITE: https://majorpainpodcast.com
EMAIL: majorpainpodcast@gmail.com
PATREON: https://www.patreon.com/majorpainpodcast
SUBSCRIBE: https://majorpainpodcast.com/subscribe
SPOTIFY: https://open.spotify.com/show/5NDoD07WJmICdfdRKq0TyN
APPLE PODCASTS: https://podcasts.apple.com/us/podcast/major-pain/id1562947550?mt=2&ls=1
SOCIAL MEDIA
INSTAGRAM: https://www.instagram.com/majorpainpodcast
TIKTOK: https://www.tiktok.com/@majorpainpodcast
YOUTUBE: https://www.youtube.com/@MajorPainPodcast
FACEBOOK: https://www.facebook.com/majorpainpodcast
AFFILIATE LINKS
RARE PATIENT VOICE: https://rarepatientvoice.com/MajorPainPodcast
AMAZON SHOP: https://www.amazon.com/shop/majorpainpodcast
NEURAHEALTH: https://www.neurahealth.co/majorpain
This week on the Major Pain podcast, our host Jesse is interviewed for a change! This interview is taken from a recent rheumatoid arthritis summit hosted by Andrea Dunn. She asks Jesse what inspired him to create the Major Pain podcast, inquires about his health journey and recent diagnosis of mast cell activation syndrome (MCAS) and small fiber neuropathy (SFN), and asks what he would recommend for anyone searching to diagnose a mystery illness.
After fighting for a diagnosis for over a decade, Jesse has a lot of experience dealing with the medical system. He shares many tips for others seeking their own diagnosis, including applying for disability right away and seeking care at a teaching hospital to be closer to the latest medical research. He also discusses the importance of having mental health support throughout the diagnostic journey, and how his relationship with his partner Andi was challenged by his illness.
This interview was conducted by Andrea Dunn during her recent RA Summit. Find her online at https://www.rawyldchyld.com/
PODCAST LINKS
WEBSITE: https://majorpainpodcast.com
EMAIL: majorpainpodcast@gmail.com
PATREON: https://www.patreon.com/majorpainpodcast
SUBSCRIBE: https://majorpainpodcast.com/subscribe
SPOTIFY: https://open.spotify.com/show/5NDoD07WJmICdfdRKq0TyN
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Ezra lives with collagenous gastritis (CG), one of the rarest conditions we’ve ever covered on the Major Pain podcast. Collagenous gastritis is characterized by a buildup of collagen in the digestive tract, which causes bumps or nodules to form. The most common symptoms are abdominal pain and anemia.
Ezra has been living with gastrointestinal issues since they were about 10 years old, when they were diagnosed with Crohn’s disease. This is an autoimmune condition in which the body attacks the gastrointestinal tract. When Ezra first started experiencing symptoms of collagenous gastritis they assumed it was just their Crohn’s disease acting up, but their doctor did a scope and discovered nodules. A biopsy revealed these nodules were not Crohn’s related, but Ezra’s doctor was completely stumped as to what they might be. Their doctor spent the next 5 years fighting to find an answer, even asking colleagues at conferences if they had heard of similar findings. Eventually this doctor discovered the little-known disease collagenous gastritis, and Ezra’s test came back positive.
In this episode of the Major Pain podcast, Ezra tells us what it’s like to live with this exceedingly rare disease. They have been told that only 200-1000 people have ever been diagnosed with collagenous gastritis. Ezra discusses the steps they have taken to treat CG including medication and diet, and how their two gastrointestinal diagnoses conflict with each other.
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Marie’s road to developing pudendal neuralgia is long and complicated. Pudendal neuralgia is a chronic pain condition involving damage to the pudendal nerve, which is the main nerve that branches to the genitals. Marie now lives with constant pain that is worsened by sitting, so she is forced to either […]
A pituitary adenoma is a tumor on the pituitary gland that secretes prolactin (also called a prolactinoma). For some people these tumors can be harmless and go unnoticed, but for others it can cause severe symptoms. For Andi it caused extreme hormone dysregulation, exhaustion and mental health challenges, including depression, […]
Mark’s disturbing health problems have been stumping doctors for years. He started having zappy pains in his hands, face and feet, temperature dysregulation, heart rate and dizziness issues. His PCP was quick to blame these symptoms on anxiety, but Mark knew there was something else at work. His gastroenterologist discovered […]
Cassie sums up her chronic pain situation by saying, “we know there’s something wrong but we can’t put a name to it because the testing is not definitive.” She experiences chronic joint pain, chronic fatigue, brain fog and arthritic damage with no evidence of inflammation on her imaging. Doctors have […]
Gryph has been living with dissociative identity disorder (DID) since early childhood, having developed 15 distinct identities or ‘alters’. He says, “Many of my alters have been around since the age of 2, so by the time I was diagnosed, they had 20 years of life experiences under their belts.” […]
Serena has gone to great lengths to uncover the cause of their severe chronic pain. Like many chronic illness patients, they have run into barrier after barrier when seeking care. Serena lives in Tennessee and has been denied for health insurance 5 times. They have also been denied 3 times […]
Juvenile rheumatoid arthritis refers to an onset of autoimmune arthritis at a young age, which happened to Andrea when she was just 10 years old. She had been experiencing severe TMJ, wrist and knee pain, but doctors did not realize she had juvenile RA throughout her childhood. She was finally […]
Every time Isobel has a medical test done, she has her fingers crossed that something will come back abnormal. She has been living with flare-ups on and off throughout her life, starting after a severe viral infection when she was 9 years old. Her symptoms include extreme fatigue, dizziness, brain […]
When Chanda Hinton was 9 years old she suffered a spinal cord injury due to an accidental discharge of a firearm. This moment would forever alter the course of her life, but looking back, Chanda isn’t sure she would change anything. Her work as a disability advocate has altered countless […]
In 2005 Tracey was in a car crash that completely changed her life. She immediately developed slurred speech and an ice-pick headache right through the center of her brain. At the emergency room she was diagnosed with a concussion and sent home, but things only got worse from there. She […]
In her early 20s, Kristin’s body started exhibiting changes that she could not explain. She started gaining weight mysteriously, noticing that her hands and face were growing larger. Over the years this mystery intensified, even her tongue and internal organs were growing. Kristin sought help from many doctors, but was […]
The Stimpunks Foundation exists for the direct support and mutual aid of neurodivergent and disabled people. Oftentimes that can look as simple as just giving people cash, as studies have shown that no strings attached financial aid is one of the most effective ways to prop up individuals in need. […]
Functional neurological disorder (FND) is usually diagnosed when an individual has neurological symptoms but no clinical evidence of disease, and a history of personal trauma. The theory is that the brain converts stress or trauma into physical symptoms, and the treatment involves cognitive behavioral therapy (CBT) aimed at rewiring the […]
Judy Foreman is a lifelong journalist who spent most of her career at the Boston Globe as a science and medical writer. She had a medical column that was syndicated in national and international outlets including the Los Angeles Times, Dallas Morning News, Baltimore Sun and others. She is the […]
Jessy has been living with a disabling mystery illness that has turned his life upside down. He experiences extreme fatigue, brain fog, tremors and intense pain. His body has become so unreliable that he requires a wheelchair to navigate the world. And yet, his doctors have no idea what is […]
This week on the Major Pain podcast, Seattle based performer Rachel Guyer-Mafune discusses her history with mental health challenges, including anxiety, depression, ADHD and bipolar disorder. Although she was diagnosed with bipolar disorder in freshman year of college, she is only now beginning to open up about this diagnosis publicly. […]
Hollie has been living with spinal adhesive arachnoiditis for about 16 years. Many people have never heard of this disease, including many of Hollie’s doctors. The arachnoid is a membrane that surrounds and protects the nerves in the spinal cord. Arachnoiditis refers to inflammation of this membrane, which can progress […]
Are you struggling to find your way through the American healthcare system? Managing a chronic illness or disability is hard enough, but convoluted healthcare plans, access issues and affordability can put brick walls in the way of necessary care. Many patients are unaware that organizations like Patients Rising exist with […]
Elaine’s odyssey to understand and treat restless leg syndrome (RLS) has spanned decades. Symptoms began in her 30s, pulling and jerking sensations mostly in her legs that made it difficult to relax. She had no idea how to describe what was happening, deciding it was impossible to tell a doctor […]
When Daniel was 17 years old he began to believe that he was a potential vessel for the Antichrist. Believing he was one of millions of potential vessels, he thought it was his responsibility to chose whether or not he should accept this role and allow his body to be […]
In 2017 Brad started experiencing multiple falls that became concerning. He went to get checked out and discovered there was a baseball sized tumor growing on his brainstem. This tumor was a meningioma that had been growing for decades, possibly upwards of 30 years. As Brad was rushed to surgery, […]
Kaitlyn is a 23 year old recent college graduate who has been diagnosed with a whopping 14 chronic illnesses. They include Crohn’s disease, polycystic ovarian syndrome (PCOS), prediabetes, psoriasis, hidradenitis suppurativa (HS), dermatographism, chronic hives, dysautonomia, hypermobile Ehlers-Danlos syndrome (hEDS), postural orthostatic tachycardia syndrome (POTS), vasovagal syncope, cyclic vomiting syndrome […]
Jesse finally has a name for his mystery illness, as he was recently diagnosed with mast cell activation syndrome (MCAS). Andi joins him for a discussion on how this diagnosis came to be. They also discuss the progress on Jesse’s small fiber neuropathy examination, disability hearing and first experience having […]
At 19 years old, Sam Salvaggio had a strange day where her body suddenly felt off. She was woozy, and everything slowed down as if she were moving through molasses. Even though it was a cold day she sweat through all her clothes, then went home and slept for 20 […]
Rohan contracted COVID-19 right at the beginning of the pandemic in March of 2020. A few weeks later he suffered a transient ischemic attack (TIA) also called a ministroke as a result of his infection. Although he recovered from the TIA, COVID was another story. His situation deteriorated into long […]
Christine has been experiencing mysterious chronic pain since she was a teenager. It feels like her joints are grinding across each other, occasionally locking up so she cannot move. A few years ago her hip locked up in the middle of the night so she went to the emergency room. […]
Angela B. Brown has lived through a remarkable amount of health challenges. She says she has been a patient since day one, since she was born with three holes in her heart that have required multiple open-heart surgeries. Her chronic illnesses include a kidney disease called IGA nephropathy, a lung […]
Dana experienced medical gaslighting for the first time when they were just 10 years old. A doctor accused them of making up their symptoms for attention, telling Dana’s mother they needed to be disciplined more. Dana promised themself they wouldn’t go back to the doctor unless they absolutely had to, […]
Beth Ruffin owns a consulting business that teaches diversity, equity and inclusion in professional spaces. She focuses on self-empowerment, helping people learn to include themselves. Although Beth is extremely passionate about her work, finding the right work-life balance has been challenging since she lives with three chronic health conditions: fibromyalgia, anxiety and depression.
Getting a fibromyalgia diagnosis was a frustrating journey for Beth. After three years of dealing with symptoms, she ended up traveling to the Mayo clinic where she was eventually diagnosed. Her doctors told her to lose weight and stop consuming alcohol and sugar, then sent her on her way. It wasn't until Beth joined support groups online and discovered a sympathetic local doctor that she finally started to make progress, learning to accept her disease and integrate it into her life.
In this episode of the Major Pain podcast, Beth discusses her chronic illness journey and balancing her professional life with her health challenges. She says the best thing she's learned to do is listen to her body, tracking how much work she can handle and enforcing limits on her work hours. She opens up about her challenges with anxiety and depression, including panic attacks that require medication. Beth also discusses the idea that rest is revolution, and the importance of focusing on impact versus productivity.
Discover Beth's diversity, equity and inclusion practice at https://bethruffin.com/
Karra has spent years researching couples and chronic illness, creating a blueprint to help maintain joyful relationships.
18 years ago Erik was told he had the beginnings of diverticulitis, a condition characterized by inflammation of small pouches in the digestive tract. From then on he avoided foods like popcorn or seeds that could get caught in these pouches and cause infection. Besides these dietary restrictions, diverticulitis didn’t […]
Raven's journey to be diagnosed with cyclic vomiting syndrome (CVS) was deeply traumatic, not only due to their debilitating disease but from the way doctors treated them along the way. CVS is characterized by episodes of intense vomiting that can be severe enough to warrant emergency care. Raven says it's not just throwing up, it's constant vomiting that you cannot stop, which becomes dry heaving when you are depleted of all food and fluids.
Raven first started experiencing episodes of cyclic vomiting when they were just 6 or 7 years old, but had no idea why it was happening. These episodes followed them into adulthood, where they discovered that medicinal cannabis provided relief for some symptoms. They disclosed this to a doctor, one of many who brushed off their symptoms as being anxiety related. In fact, this doctor listed on their chart that Raven was an illicit drug user with an eating disorder. Instead of providing any help for Raven's then-mysterious ailment, this doctor doomed Raven to years of extreme prejudice and neglect from future healthcare providers.
Through researching symptoms Raven found cyclic vomiting syndrome as a potential diagnosis, but it would be years before any doctor would listen to this hypothesis. When they finally convinced a doctor to test this theory, CVS medication proved extremely effective. Their disease is now in remission and their diagnosis has been officially recorded. Although this moment was deeply validating, it also brought up deep anger that Raven wasn't listened to sooner.
In this episode of the Major Pain podcast, Raven talks us through their torturous diagnostic process and teaches us about their rare disease. They tell us about the three types of CVS, the migraine variant, seizure variant and mitochondrial cell defect. Now that they can keep down food and water thanks to their CVS medication, they are trying to figure out how to deal with the emotional and physical trauma they have endured. Raven hopes that by sharing their story, others with CVS will be able to hear from at least one other person who has lived through something similar.
The June bonus episode for our Patreon community is now available, click to listen.
TheIncrediblePaco is a well-known content creator in the Mario Maker community, who was making his full-time living playing video games leading up to the start of the COVID-19 pandemic. Tens of thousands of fans subscribe to his Twitch channel for live streams, and YouTube for edited videos. He became ill […]
The post TheIncrediblePaco on Long COVID Impacting His Gaming Career appeared first on Major Pain.
Rick Olderman is a sports and orthopedic physical therapist with over 25 years experience. He is the author of Solving the Pain Puzzle: Cases from 25 Years as a Physical Therapist as well as the Fixing You® series of books to help people with chronic pain or recurring injuries. He […]
The post How Rick Olderman’s Chronic Pain Journey Informed His Physical Therapy Career appeared first on Major Pain.
Kimberly’s harrowing experiences with gastrointestinal issues go back about 10 years. At first she would have random bouts of diarrhea, but be fine for months in between. She didn’t seek medical care until about 7 years later when these issues had become so severe they were interfering in daily life. […]
The post Overcoming a Parasite and C. Diff Infection: Kimberly Shares Her Story appeared first on Major Pain.
Jeff lives with a medical mystery that has stumped doctors in multiple specialties. He experiences episodes that strike about once a week, and leave him almost catatonic. He will become hypersensitive to his environment, unable to communicate, and struggle to perform basic functions. Strangely, the only consistent way to end […]
The post Help Us Solve Jeff’s Medical Mystery appeared first on Major Pain.
In 2015 Karen noticed that her right arm was not swinging as normal when she walked. She was sent to a neurologist who quickly diagnosed her with Parkinson’s disease (PD), a neurodegenerative disorder that affects the body in a wide variety of ways. Symptoms can include tremors, slowed movement, muscle […]
The post Living with Parkinson’s Disease appeared first on Major Pain.
Tyler Roope is a 25 year old TikTok star, who blends comedy and education while advocating on behalf of the disability community. He lives with spinal muscular atrophy (SMA) type 2, which severely limits his voluntary muscle movement. Tyler is considered a strong type 2 since he is able to […]
The post Tyler Roope on Living with Spinal Muscular Atrophy (SMA) appeared first on Major Pain.
Troy is a nurse practitioner at a LGBTQ healthcare clinic in Seattle, Washington. He refers to it as gay providers taking care of the gay community, allowing a rare opportunity for himself and his colleagues to make meaningful differences in the lives of their patients. Many individuals across the spectrum […]
The post LGBTQ Healthcare: What Are the Unique Medical Needs of This Community? appeared first on Major Pain.
Myotonia congenita is a genetic disorder that Amelia recently discovered she has been living with her whole life. The disease is characterized by an inability to quickly relax muscles after contraction, which can cause muscle imbalance, rapid fatigue, chronic pain, and difficulty with daily movement like climbing stairs or standing […]
The post Living with Myotonia Congenita appeared first on Major Pain.
Courtney’s mysterious illness remains undiagnosedCourtney refers to herself as a hot potato patient, being passed from specialist to specialist in search of a diagnosis to her mystery illness, but none of these providers have been willing to keep digging until an answer is found. She used to be an avid globe trotter while working as a pharmacist, but when her illness kicked into high gear she became unable to pursue travel or maintain employment. Since then she has put as much energy as possible into solving her diagnostic puzzle, but an answer has remained elusive.
Courtney’s neurological symptoms started with facial spasms that eventually spread to her arm, shoulder and ribcage. These uncontrollable movements are accompanied by extreme fatigue, bouts of confusion and heart rate issues. Her doctors have found several troubling abnormalities in her testing including spinal lesions on her MRI, slightly elevated MS and lupus antibodies in her spinal fluid and elevated porphyrins in her urine. Frustratingly, none of these findings have clearly pointed to a diagnosis.
The deeper Courtney sojourns into this diagnostic morass, the more frustrated she becomes by infuriating contradictions. Her disability claim has been denied with the recommendation she return to work, but doctors agree she is not ready to be cleared for employment. She has tested with low copper and ceruloplasmin (a protein that binds to copper), and started supplementing copper to correct this. Then she learned these tests could be indicative of excess copper storing in her body (the main symptom of Wilson’s disease), and cannot get a clear answer if her copper is low or high. She has tested as a genetic carrier for Wilson’s disease and brittle cornea syndrome (a connective tissues disease related to EDS) but her doctors don’t agree if being a carrier could be causing symptoms. She has notes from so many doctors on her chart that new providers will often assume she is a problematic patient and be reluctant to add anything new.
In this episode of the Major Pain podcast, Courtney discusses her difficult diagnostic journey so far. She is deeply grateful to the friends and family who have stepped up to care for her when caring for herself became difficult. Her sister owns a campground on the Mississippi river in Savanna, Illinois that has been an invaluable haven from her medical trauma (learn more here). She hopes that sharing her story on this platform might crowdsource new diagnostic ideas to pursue. If you have ideas to share after listening to her journey, email Jesse at majorpainpodcast@gmail.com.
In this episode we also check in with former guest Sydni Dupre to announce her new video podcast! Find her on YouTube at https://www.youtube.com/@SydniGDupre
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Andrew, Aimee and Ilana return to update us on their health journeys. This week we kick off the third season of Major Pain by catching up with previous guests!
First we’ll check in with Andrew, who originally appeared in December 2021 to discuss mild traumatic brain injury (MTBI). He has been slowly improving since then, feeling as if a new self is emerging. He’ll tell us about pushing himself socially and physically through tango dancing, feeling as though he is coming back alive. Find his original episode here: https://majorpainpodcast.com/living-with-mild-traumatic-brain-injury/
Next we’ll talk to Aimee Stephanie Perez, who originally appeared in June 2022 to discuss psoriatic arthritis, psoriasis and PMDD. A few months back Aimee was diagnosed with colitis, having to now deal with an additional chronic illness. Although she was not surprised by this diagnosis, she is still struggling to integrate it into her life. The dietary restrictions have proved extremely challenging. Her late father also suffered from psoriatic disease and colitis, so this new diagnosis has her reconsidering many memories of her father. Find her original episode here: https://majorpainpodcast.com/living-with-psoriatic-disease/
Lastly, we’ll chat with Ilana Jacqueline, who originally appeared in May 2022 to discuss primary immune deficiency disease and her mysterious adhesion disorder. Ilana is also dealing with the emergence of another chronic illness, having recently been diagnosed with intracranial hypertension. Her condition had become so severe that her mother noticed her eye bulging along with abnormal speech. Ilana is now receiving regular spinal taps to relieve pressure on her brain, since pharmaceutical intervention was not well tolerated. Although her doctors have recommended brain surgery, Ilana is weighing her options while working on a new book about medical gaslighting. Find her original interview here: https://majorpainpodcast.com/chronic-illness-author-and-advocate-ilana-jacqueline-shares-her-rare-disease-journey/
Another bonus episode for our Patreon subscribers is now available! Take a listen (or sign up to gain access) HERE
Show some love to our brand new YouTube channel! https://www.youtube.com/@MajorPainPodcast
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Andi and Jesse wrap up season 2 of Major Pain by sharing their health updates and reflecting on the past year of the show. Jesse discusses his potential diagnoses of mast cell activation syndrome and small fiber neuropathy, while Andi tells us about her vocal surgery recovery.
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Michelle is an idiopathic intracranial hypertension patient and advocate.Michelle is unsure when her journey with idiopathic intracranial hypertension (IIH) began. She started experiencing chronic migraines and pulsatile tinnitus in her 20s, which may have been the first sign. However, a freak accident in which a man fell from a theater balcony onto Michelle in 2017 intensified her symptoms, leading to an IIH diagnosis in 2019.
Intracranial hypertension is characterized by pressure inside the skull caused by a buildup of cerebrospinal fluid around the brain. Although there are many reasons this can happen such as a blood clot or infection, Michelle has the idiopathic form meaning there is no confirmed cause for her condition. Symptoms include headache, twitching, temporary blindness, absent seizures, fatigue, brain fog, memory loss, and papilledema (optic nerve swelling).
In 2017, Michelle attended a play at her local theater. She decided to stay in her seat during intermission, during which a man fell 30 feet from the balcony above. He landed on the left side of Michelle’s head and shoulder, breaking the metal chair beneath them. After this incident Michelle began experiencing visual disturbances, so she went to have her eyes checked. She was told her optic nerve was swollen and sent to the ER. During a spinal tap the opening pressure of her spinal cord was measured and it was very high, leading to her diagnosis with IIH.
In this episode of the Major Pain podcast, Michelle tells us about the incredible accident that worsened her disease, the diagnostic process, and how she manages IIH. Recently her situation was complicated by a Crohn’s disease diagnosis, requiring changes to her diet that are contrary to the diet recommended for IIH. To vent frustration while also building community around chronic illness, Michelle launched the IIHWarriors platform. She creates content on TikTok and runs an Etsy store, for which all proceeds go to IIH research at Johns Hopkins University.
IIHWarriors Linktree: https://linktr.ee/IIHWarriors
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Coach Ki is a wellness coach and fibromyalgia advocate.After being diagnosed with fibromyalgia, Kiera (AKA Coach Ki) did some online research to see if she would be able to continue her fitness journey. She was disheartened to find several accounts of people unable to continue training with this disease. Kiera has been passionate about fitness since she was 14 years old and feared losing herself if she couldn’t train anymore.
Fibromyalgia is best known for the presence of widespread chronic pain, but is also associated with fatigue, brain fog and several other symptoms. On a mild day, Kiera experiences radiating pain in her shoulders, wrists, knees, and neck. On a severe day this pain spreads throughout her entire body, making any movement difficult. These symptoms appeared mysteriously during her mid-20s while she was serving in the US Army. It took over a year to get a diagnosis from a military doctor.
Initially, Kiera rebelled against the idea of having a chronic health condition, but denying this reality only worsened her symptoms. She is now coming to terms with her disease and learning to integrate it into her fitness practice. She is discovering ways to train her body while managing her fibromyalgia pain (such as using a tens machine), taking breaks more often, adjusting expectations and listening to her body. She is excited to share what she’s learned on social media (including TikTok and Instagram), and through her work as a higher self mentor and life elevation strategist.
In this episode of the Major Pain podcast, Kiera discusses her fibromyalgia diagnosis and how it has impacted her life. She has also been diagnosed with hypermobility, and is currently searching for a connection between her two conditions to determine if she has a connective tissue disease like EDS (Ehlers-Danlos Syndrome). As a fiancée and mother of two, fighting for her health is more than just a personal quest, as she wants to ensure she can be there for her family. Her fibromyalgia journey has already taught her a great deal about empathy, perseverance, and the importance of acceptance.
Learn more about Coach Ki on her website: https://www.herdivinealignment.com
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Toya Jules was first diagnosed with lupus in her teens, and lupus nephritis in her early 20s. In her early 20s, Marimee (who goes by Toya) was diagnosed with lupus nephritis. This is a complication found in people with systemic lupus, in which lupus autoantibodies damage the kidneys, causing impaired function or even kidney failure. At first, Toya was horrified to discover she had this disease, being forced to confront potentialities like dialysis and a kidney transplant. However, after a tumultuous journey in which she learned much about advocating for herself, Toya is now in remission after trying a game-changing medication.
Systemic lupus is an autoimmune condition in which the immune system mistakenly attacks healthy tissue throughout the body. Toya was first diagnosed with this disease at just 15 years old, a revelation that completely disrupted her life. During her senior year of high school she started experiencing extreme joint pain while suddenly becoming allergic to almost everything. Her allergist was the first to suggest lupus as a diagnosis. The three month wait to see a rheumatologist was almost unbearable as she experienced constant fevers. Once her lupus diagnosis was confirmed she was determined not to let this disease slow her down, but soon after starting college she recognized the need to put school on pause and rest.
Unfortunately, resting did not provide any health benefit. She continued to decline and ended up in the hospital for 10 days, where she learned that she had lupus nephritis and her kidneys were failing. This ended up being a turning point for Toya, as this traumatic revelation helped push her to advocate for herself more vigorously. She did some research and discovered positive outcomes for lupus patients taking the drug benlysta. After pushing her doctor for a prescription, Toya now finds herself in remission with dramatically improved kidney function.
In this episode of the Major Pain podcast, Toya discusses how this traumatic medical journey has inspired her to create the Village Tree Health Support Network, a startup nonprofit designed to be a hub for patient care access and case management. She describes this endeavor as “something that I was meant to do. I’m able to turn my pain into purpose.” She now recognizes the importance of advocating on behalf of the chronic illness community, discovering a passion and direction she never would have considered without her diagnosis.
Connect with Toya on Instagram @toyajules_
Check out Jesse’s appearance on the Seizure Salad podcast: https://seizuresalad.podbean.com/e/misdiagnosis-rollercoaster-w-jesse-mercury-of-the-major-pain-podcast/
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Jo’s health went haywire after being diagnosed with pancreatitis in 2017.In 2017, Jo began experiencing intense pain under her rib cage that traveled to her back, as if she was being impaled. She had complained of various pains throughout her life that doctors always brushed off, so at first she had no desire to seek professional help. But after two weeks of this stabbing pain, something had to be done. She was expecting doctors to run tests and once again tell her everything was normal, but was shocked when they discovered acute pancreatitis.
Pancreatitis refers to inflammation of the pancreas and can have many causes. For Jo, her pancreatic ducts had narrowed, backing up the normal flow of enzymes and causing intense pain. Jo says this was the tipping point that caused the rest of her body to go haywire. Since then her list of diagnoses has grown dramatically to include Sjogren’s syndrome, small fiber neuropathy (SFN), mast cell activation syndrome (MCAS), cervical cranial instability (CCI) and several other conditions. She has also found an explanation for her various pains throughout her earlier life, after being diagnosed with the genetic connective tissue disease Ehlers-Danlos Syndrome (EDS).
In this episode of the Major Pain podcast, Jo talks us through some of her intense medical journey so far. Her pancreatitis has transitioned from acute to chronic, and is being managed through injections to block the celiac plexus nerves in the abdomen. Although her pancreatitis is still causing intense pain, this celiac plexus block dulls the pain signals to a more manageable level.
During this interview we talk extensively about small fiber neuropathy, a condition that arises after continued damage to nerve endings. SFN can cause a wide variety of symptoms including extreme sensitivity to touch, burning sensations, temperature dysregulation, gastrointestinal issues and even paralysis. Jo talks us through her diagnostic process for SFN, a skin punch biopsy where doctors looked at her small nerve fibers under a microscope. Jo’s SFN is believed to be caused by her Sjogren’s syndrome, although she has a few diseases which may be causing this comorbidity.
Jo is the kind of person who likes to be in control of her life, and found it emotionally devastating when chronic illness took some of that away. Sometimes the way she was treated by medical professionals was even worse than her physical pain, adding another layer of challenge to an overwhelming situation. Still, Jo has learned invaluable lessons from her medical journey. She realized she needed to stop living in the past and worry less about the future, leaving her to find things to be grateful for in the present moment. In 2019 she was featured on ‘Chasing the Cure’ with Ann Curry, allowing her to educate a wide television audience on her unique story.
During this interview we discuss the low histamine diet. Find the histamine master list here: https://www.mastzellaktivierung.info/downloads/foodlist/21_FoodList_EN_alphabetic_withCateg.pdf
We also discuss an article on small fiber neuropathy which can be found here: https://www.foundationforpn.org/small-fiber-neuropathy-causes-it-all/
Find Jo on Twitter and TikTok
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Vicky has been diagnosed with multiple autoimmune conditions, including rheumatoid arthritis, Sjogren’s syndrome, Raynaud’s disease, interstitial cystitis and gastroparesis. According to the National Library of Medicine, about 25 percent of patients with an autoimmune disease will develop additional autoimmune diseases. That is definitely true of this week’s podcast guest, Vicky. Her first diagnosis of autoimmune rheumatoid arthritis came during high school, and she was diagnosed with Sjogren’s syndrome a few years later. This condition causes the moisture-secreting glands and mucous membranes to be drier than normal, resulting in dry eyes and mouth.
Vicky has also been diagnosed with interstitial cystitis, Raynaud’s phenomenon and gastroparesis, all of which are suspected to be autoimmune related. Interstitial cystitis affects the bladder and can cause urinary retention or hyperactivity, pain or ulcers. Vicky says it feels like having a UTI all the time. Raynaud’s phenomenon causes fingers and toes to feel numb and change color. Gastroparesis is characterized by slowing or even halting of the muscles in your stomach. It can be a comorbidity in many conditions including diabetes, Parkinson’s, EDS and MS, occur idiopathically, or in Vicky’s case be autoimmune in nature.
Naturally, having this many conditions coexist in one person can feel extremely overwhelming. After her fourth diagnosis, Vicky didn’t want to deal with any of this anymore. She was sick of going to doctors, sick of getting bad news about her health, and aching to forget that these health challenges existed. But ignoring chronic illness never makes it go away, and over time Vicky made huge progress learning to manage these diseases. She is now in a relatively stable place thanks to her current treatment regiment.
In this episode of the Major Pain podcast, Vicky walks us through her many diagnoses and what she’s learned along the way. She shares firsthand experience of what these diseases feel like, as well as living through an unexpected bout of idiopathic intracranial hypertension. She also discusses what she’s learned about navigating the medical system and how to push through the many roadblocks chronic illness can present.
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Micah started the Seizure Salad podcast after his diagnosis with breakthrough adult-onset epilepsyAs a child, Micah would experience episodes where he would space out or become manic in class, leading his teachers to assume he had a mood disorder. He would have night terrors where his consciousness would expand beyond his body, believing he was connected to something otherworldly. He chalked it up to aliens or magic, but eventually moved on as these episodes stopped happening in his 20s. It wasn’t until he was diagnosed with breakthrough adult-onset epilepsy that he realized these childhood issues were likely his first seizures.
Micah was almost 50 years old when his seizures fully broke through. He had gone outside for an early morning stretch, blacked out, and woke up 25 minutes later sprawled over a bike rack with torn muscles in his shoulder and back. This was his first generalized seizure, also known as a grand mal. Over the next few years he would try 14 different combinations of medications trying to minimize his now constant seizures, but the side effects were extreme and the benefit was unsatisfactory.
Eventually, Micah’s doctors recommended he undergo surgery to install a responsive neurostimulation system (RNS). They cut out a section of his skull to install a tray which holds the device, implanting it just behind his right temple. For the first month after installation his RNS only recorded seizure activity, providing his doctors data to tune the device to his individual needs. Then they flipped it on, and it began sending counter-pulses of electricity into his brain to counteract his seizures in real-time. In the months since turning on his RNS device, Micah has had no significant seizures.
In this episode of the Major Pain podcast, Micah talks us through his experiences with breakthrough adult-onset epilepsy, as well as his RNS. When his epilepsy broke through life came to a screeching halt, severely limiting his functionality and productivity. Now that his physical situation has improved, he is beginning the process of dealing with the emotional and mental fallout of such a fundamentally challenging experience. Micah creates his own podcast called Seizure Salad, chronicling his journey with epilepsy while connecting with fellow patients and advocates. Find it at https://seizuresalad.org/
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Joey Torre feels that advocating on behalf of fellow hidradenitis suppurativa patients is his life’s purpose.Joey Torre suffers from hidradenitis suppurativa (HS), a painful, chronic skin condition that affects up to 2% of the population. The disease causes the formation of bumps, lesions, or boils in sweat gland areas, such as the armpits and groin. Joey also experiences extreme fatigue, which can sometimes accompany HS, requiring him to constantly manage his energy levels to stay productive. His journey with HS, spanning 15 years so far, has impacted every aspect of his life and taken him in unexpected directions.
In his early 20s, shortly after being diagnosed with HS, Joey rebelled against the notion that he needed to adjust his life to accommodate a chronic health condition. He was a heavy smoker who enjoyed partying and drinking, habits that could exacerbate the severity of his HS flares. During this time, his flares were rock hard, painful, oozing, and pungent. After years of enduring not only physical pain and discomfort but also anxiety and depression related to his disease, he finally made the decision to adopt some lifestyle changes.
Joey began working towards a life of discipline, eliminating smoking and drinking while adjusting his diet and adding in some exercise. It took time, but these lifestyle changes eventually calmed down his HS flares to more manageable levels. He began to examine his relationship to HS, realizing that hiding this part of himself was doing more harm than good. This led him to become an HS advocate through social media, educating others about his disease while creating community for those who share his diagnosis.
In this episode of the Major Pain podcast, Joey recounts his journey with hidradenitis suppurativa so far and describes how learning to manage this disease has made him a better person. Initially, he would have done anything to eliminate HS from his life, but he now considers his work as an HS advocate to be his life’s purpose. He also shares practical tips for managing this disease, and common misconceptions people often have about HS.
Find more information about HS at https://hsdisease.com, including articles written by Joey.
Our Major Pain bonus episode for the month of February is now available. While Jesse’s health has moved in a positive direction, Andi has been having the opposite experience. They discuss their crisscrossing journeys in this bonus episode for our Patreon subscribers. Click here to listen.
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The Hypertrophic Olivary Degeneration Association (HODA) was founded by Christina Coates after being diagnosed with this rare disease.When Christina turned 40 she suddenly started having migraines every day. She was going to work as an accountant dealing with spreadsheets and math, while splitting headaches turned each day into relentless agony. After a month of this pain she finally went to see her doctor, who ordered an MRI. The results arrived as a voicemail, stating there was an abnormality on her brain and she should go see a neurologist.
Christina soon discovered that she had a cavernous malformation (also known as an angioma) on the fourth ventricle of her brain, adjacent to her brain stem. A cerebral cavernous malformation (CCM) is an abnormal bundle of stretched out blood vessels that may bleed into the surrounding area. Christina was instructed to monitor this legion with regular MRIs. Although it initially remained stable, in 2020 imaging showed that her CCM was filling up with blood. Since this was adjacent to Christina’s brain stem, there was serious risk of bleeding into her spinal fluid, or even the chance this CCM could rupture. After discussing with her doctors and family, Christina knew it was time for surgery.
Christina’s neurosurgeon successfully resected the entire cavernous malformation from the fourth ventricle of her brain, but shockingly did not prepare her for the post-surgery recovery period. Christina had to re-learn basic functions like walking and showering, a possibility that was never mentioned to her prior to surgery. She had no chance to prepare herself emotionally or mentally for these challenges, or to prepare her 20 year old child to see her mother struggle in this way. Given no choice but to overcome these obstacles, Christina committed herself to her physical therapy and was able to return to work 6 weeks later.
After returning to work Christina developed intense pain behind her eye, while her vision started looking bouncy. She was sent in for another MRI, and a legion was discovered on her medulla oblongata (a structure at the base of the brain stem) that had not been present prior to surgery. Her doctors were stumped by this development, so Christina sought a second opinion from the Mayo clinic. There she was diagnosed with hypertrophic olivary degeneration (HOD), an exceedingly rare and poorly understood condition.
Hypertrophic olivary degeneration affects one or both inferior olivary nuclei, a pair of olive-shaped structures in the medulla oblongata responsible for coordinating signals from the brain to the spinal cord. With HOD this olivary nucleus first expands like a balloon then begins to atrophy. This causes a wide range of symptoms that may mimic multiple sclerosis (MS), and varies widely from person to person.
Being diagnosed with this degenerative neurological disease was a huge blow to Christina. Initially she found it difficult finding the will to continue living, but eventually discovered new purpose after creating the Hypertrophic Olivary Degeneration Association (HODA), a nonprofit dedicated to raising funds for HOD research while performing patient outreach and educational advocacy. Hear a first-hand account of her incredible story and learn about this rare disease in this week’s episode of the Major Pain podcast.
Find HODA online at https://hodassoc.org/
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Cover artwork for ‘Compass Points the Way’ by Alexis KlineAs a child, Alexis Kline hoped to one day be a professional soccer player. That all changed at 12 years old during soccer tryouts when Alexis started feeling so weak and sore that she needed to visit the doctor. Her soccer dreams were dashed when she was diagnosed with dysautonomia, a condition in which the autonomic nervous system functions incorrectly. This can have wide ranging effects on the body, potentially involving the heart, bladder, intestines, sweat glands, pupils, and blood vessels. To this day, Alexis’s exact form of dysautonomia remains unknown.
Alexis has channeled her years of experience navigating chronic illness into her new middle grade novel ‘Compass Points the Way.’ The author’s story is mirrored in the main character Allie in that she dreams of nothing but soccer, but diverges from the author’s reality in that Allie is diagnosed with POTS, or postural orthostatic tachycardia syndrome. A huge element in the book is Allie’s relationship with her dog Compass, and how this canine friend helps inspire Allie to switch gears and find new purpose in life after her POTS diagnosis. Although POTS is indeed a form of dysautonomia, Alexis herself does not meet the criteria. She decided to focus on POTS in her novel to provide representation for this specific disease, as it is being diagnosed in higher numbers than ever before.
In this episode of the Major Pain podcast, Alexis details the inspirations behind ‘Compass Points the Way’ while also sharing her tumultuous path through chronic illness. When she initially left soccer practice due to illness she was immediately diagnosed with mono, but never fully recovered. Doctors have debated whether or not to qualify her as having CFS/ME (chronic fatigue syndrome or myalgic encephalomyelitis), but have leaned towards believing this mono infection triggered a flare of an underlying illness. This theory is influenced by the presence of Alexis’s comorbidities, including Chiari malformation and small fiber neuropathy.
Although Alexis has not given up on uncovering the mysteries of her chronic illness, she has also turned her attention to improving her quality of life within her limitations. She has discovered that mobility aides including a walker and wheelchair allow her to participate in life more fully. Being an author was always a distant dream, but Alexis turned it into a reality after realizing she was unable to maintain consistent employment. By refocusing her life goals and aspiring to reach new dreams, she has proven that finding direction and meaning is still possible while living with chronic illness.
Find Alexis’s published works at https://www.underthesunpublishing.com/
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As a senior in high school, Genevieve won an essay contest writing about the changes she’d like to see with the stigma surrounding bipolar disorder. This brought her to the attention of a foundation aimed at raising bipolar awareness, and at 19 years old she began touring with a state funded program to speak about her disease. She found herself put on a pedestal as a bipolar success story, although her journey with this disease had been extremely rocky throughout her teenage years.
Genevieve was diagnosed as an adolescent case of type II bipolar disorder around 13 or 14 years old, having already been diagnosed with ADHD earlier in elementary school. She oscillated between periods of depression and hypomania, with so many thoughts in her head it was hard to focus on the present. Her depressive episodes featured low motivation, low self-esteem and feelings of worthlessness, while her periods of mania brought feelings of elation, intense creativity and obsessive focus on certain activities. Genevieve equates hypomania to speeding down the freeway in a fast car. At first it was thrilling, but over time it began to feel like a brick was holding her foot down on the gas, making it impossible to slow down.
Genevieve started trying different medications to see what might provide benefit shortly after her bipolar diagnosis. This process was deeply painful, and forced Genevieve to spend many of her teenage years in a blur of destabilization, as if she was being swallowed by a turbulent sea. At 18 years old she was allowed to try lamictal, a medication reserved for older patients since it can cause a life-threatening reaction and serious side effects. For Genevieve this medication was like magic, finally allowing her to focus on life and the future. Shortly after this revelation she found herself on a state sponsored tour, telling others there was hope in their bipolar journey.
Looking back, Genevieve has extremely complex feelings about her tenure as a spokesperson for a bipolar foundation. People would constantly ask how to be as successful as her or what to do for their struggling children. This was too much pressure for a 19 year old, especially since the narrative she was asked to share was not entirely in her control, and she had just started doing better herself. She feels guilt around peddling the superhero narrative, in which disabled individuals are often propped up for their remarkable ability to overcome their condition, rather than educate about the reality of their struggle. She also wishes more voices than hers had been featured, to add diversity to a discussion that cannot possibly be represented by one voice.
In this episode of the Major Pain podcast, Genevieve shares her experiences learning to cope with bipolar disorder and her complicated feelings around her media involvement. She also discusses developing ulcerative colitis in her late 20s, and the extremely overwhelming feeling of needing to adapt to a new chronic illness on top of what she was already managing. She is currently putting together a radio show for Hollow Earth Radio in Seattle called the Access Hour, featuring the work of artists with disabilities, chronic illnesses, invisible illnesses and chronic pain. If you are such an artist and would like to inquire about having your work featured, reach out to Genevieve at djazaleaher@gmail.com. Listen to Access Hour when it premieres on January 29th, available on KHUH 104.9 FM in Seattle or in your web browser at https://www.hollowearthradio.org/listen.
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Throughout his life, Douglas had been plagued by random episodes of fever, but they usually passed on their own and he was able to mostly ignore them. That all changed in his late 20s, when a particularly horrible fever took him to the emergency room. Doctors discovered an infection from a grapefruit-sized abscess in his body, which had turned his blood septic and become life-threatening. They also found evidence of past abscesses, which had likely burst and been absorbed into his body on their own. These incidents were the result of Crohn’s disease, a revelation that would change Douglas’s relationship with his body forever.
After his Crohn’s diagnosis, Douglas began the arduous task of trying different medications to find relief. Crohn’s is an inflammatory condition in which the digestive tract is unable to absorb nutrients properly and may cause alternating periods of constipation or loose stool, among other symptoms. Finding appropriate treatment was crucial for Douglas, since foods like the tiny seeds on strawberries got stuck in his inflamed digestive tract causing abscesses to form. Unfortunately, none of the medications he tried proved effective, and he continued to feel worse and worse.
Douglas eventually turned to alternative sources of care and decided to try Chinese medicine. After being treated with acupuncture and herbal formulas he noticed quick improvement with his GI symptoms. This led him to study Chinese medicine and become a practitioner himself. He noticed a lack of practitioners that shared his cultural identity, and began serving other Spanish speakers and members of the queer and kink community.
After studying Chinese medicine in Chicago, Douglas relocated to the Seattle area. Frighteningly, he developed DVTs (deep vein thrombosis) in his legs and lungs for no obvious reason. He was immediately put on blood thinners, being told the first 30 days were critical since his clots could dislodge and become life-threatening. This adversity once again fueled Douglas’s passion for serving his community, and he went back to school studying mental health and sex therapy. He is now combining his specialties into a holistic practice at Curativo Health in West Seattle.
In this episode of the Major Pain podcast Douglas shares his health journey, while discussing his work in Chinese medicine and sex therapy. He gives us a basic understanding of Chinese medicine, how it can help patients, and what to look for in a practitioner. He also discusses the importance of sex therapy for couples affected by chronic illness or disability, and how open discussions around intimacy can help people live fuller, happier lives.
Find Douglas at Curativo Health: https://www.curativohealth.com/
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Self portrait by podcast guest Bekah.Bekah’s mysterious illness kicked into full gear when they were 14 years old. While cooking food one day they suddenly became extremely hot, fell to the floor and realized they were too weak to get back up. They were overcome by strange neurological sensations, feeling like their arm didn’t belong on their body while their vision went in and out of focus.
When paramedics arrived Bekah was convulsing on the floor. The paramedics took one look at Bekah and said this was likely anxiety, a diagnosis that would stagnate their medical care for years. As Bekah kept having these episodes and seeking help, doctors would take one look at Bekah’s chart and double down on the anxiety diagnosis without running proper tests, even as Bekah’s progressing symptoms caused them to leave school and become bedbound. Doctors told Bekah’s parents this was the worst case of anxiety they had ever seen, but refused to entertain the possibility they were missing a crucial diagnosis.
In this episode of the Major Pain podcast, Bekah shares their health journey so far. Years into the diagnostic search Bekah’s mother mentioned her own history with epilepsy, which led to Bekah’s eventual diagnosis with partial aware seizures. However, Bekah’s neurologist couldn’t account for their myriad of other symptoms, so he diagnosed Bekah with FND (functional neurological disorder) without running appropriate tests to rule out other conditions.
Bekah finally found a PCP with a personal history of chronic illness, who was the first doctor to actually listen to Bekah’s story and take their complaints seriously. Bekah was quickly diagnosed with POTS (postural orthostatic tachycardia syndrome) and ME (myalgic encephalomyelitis). This doctor also noted Bekah’s hypermobility, and believed they might have a connective tissue disease like EDS (Ehlers-Danlos syndrome). Bekah has been trying to confirm this EDS diagnosis for years, and is still in the process of finding a doctor willing to examine the possibility.
Bekah’s list of diagnoses has continued to grow, including hemiplegic migraines, a tic disorder and gastrointestinal issues. They are also an ambulatory mobility aid user, discovering that tools like a wheelchair allow them to live more fully. They are grateful their quality of life has improved since receiving better care, but are still unpacking their anger over past medical treatment. Their hope is that laws can be put in place to prevent doctors from brushing something off as ‘just anxiety’ without running proper tests. Hear their story in this week’s podcast interview.
Find Bekah and their artwork online: https://linktr.ee/Peachiichi
Our bonus episode for the month of January is now available! Sign up on Patreon to gain access.
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Annie Vander is a country music up-and-comer, who’s latest single ‘Falling into Nashville’ has been featured on the Music Row Country Breakout Chart. Just a few years ago Annie had no idea that her lifelong musical dreams were about to come true. She had built a career working with animals, first as a vet tech and then with her own pet care business. But in 2019 she suffered a horrible accident that changed the course of her life forever. She took a bad fall on the ice during a storm in Chicago, shattering her wrist. After surgery her injury began to heal normally, but a few weeks later she woke up to excruciating pain and intense swelling. This pain was so severe it could cause her to pass out, and sometimes prevent her from leaving her bed for days at a time. Almost immediately she received a diagnosis of CRPS (complex regional pain syndrome) and was terrified to learn her wrist was stuck in a pain loop. Doctors don’t have a clear understanding of why this condition occurs or how to treat it, and Annie worried this pain would never abate.
In this episode of the Major Pain podcast, Annie tells us about her CRPS journey and how it led to her country music career. After being diagnosed she was lucky to find a therapist who had experience with this disease. She was introduced to mirror therapy, in which a mirror was used to see her healthy right hand in place of her left. The idea was to trick her brain into thinking her left hand could move freely and without pain, in the hopes of harnessing neuroplasticity to break out of her pain loop. She also began to reconnect with her childhood love of music, spending many hours singing along with her karaoke machine as a form of distraction therapy. Slowly but surely she began to make progress, feeling that her early diagnosis, knowledgeable therapist and positive attitude all contributed to her eventual remission. This harrowing ordeal lit the fire under Annie to pursue music wholeheartedly, soon finding success in Nashville and beyond. She wrote ‘Falling into Nashville’ as a metaphor for falling into music after her recovery, bringing her resilience and positivity to the radio waves.
Find Annie online at https://annievandermusic.com/
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While working as a hairstylist, Merideth was repeatedly exposed to chemicals that released formaldehyde. Eventually her health collapsed, and she found herself unable to continue working. Doctors recommended avoiding future exposure, but this proved insufficient as Meredith’s issues with chemical sensitivity began to expand exponentially. She became chronically ill, housebound […]
In 1998 Bella was severely injured during childbirth. Her doctor accidentally stepped on the pedal to raise the table she was strapped to during a C-section, causing her feet to raise and neck to lower. She immediately complained of extreme neck pain, but was sent home in a disassociated state […]
Vocational rehabilitation (voc rehab) services are available in every city of the United States, but many qualifying individuals are unaware of this pathway towards long term employment. These services are designed to help people with diagnosed physical and intellectual disabilities, mental health challenges, and some chronic illnesses to find and […]
Andi and Jesse share updates from their recent travels to New York and Florida, plus both of their health situations including Andi’s vocal injury and Jesse’s continued quest for a diagnosis. Jesse has seen significant improvements in his mobility, while being evaluated for mast cell activation syndrome (MCAS) and small […]
Heather has accumulated an overwhelming number of medical diagnoses, including Sjogren’s disease, vasculitis, SLE lupus, new daily persistent headache disorder, small intestine bacterial overgrowth (SIBO) and endometriosis. At 20 years old her boyfriend (who is now her husband) sat her down to say she was sick and needed to go […]
In 2012 Simon was dating a lovely young woman who happened to have mono. She warned Simon against kissing her as she might be contagious, but he threw caution to the wind assuming catching mono would only be a temporary setback. Indeed he did get sick with mono, and was […]
Kenneth’s family has a multi-generational history with Ehlers-Danlos syndrome (EDS). Family members with the disease include his mother, uncle, grandmother and great grandmother. Kenneth was diagnosed at just 2 years old while being examined for a knee injury. A trauma caused massive swelling in his knee, producing a hematoma the […]
Kevin has been on a diagnostic roller coaster over the past few years. He was working in a management position at a museum when he started having trouble walking, difficulty straightening up and intense pain in his feet. He also developed uveitis in his eyes, a painful inflammatory condition that […]
Everybody has mast cells in their body, as they play a critical role in allergic response. Mast cells release mediators to attack allergens, but can sometimes overreact when no allergen is present. This is the case for Pauline, who was recently diagnosed with mast cell activation syndrome (MCAS). Though her […]
Melissa and Steve are parents to two young boys on the autism spectrum. They had noticed their older son developing a black and white view of good and bad behavior, leading to self-punishment over any perceived mistakes. Melissa has a background in psychology, and wanted to introduce her boys to […]
Adrianna was born with type 1 Gaucher Disease, a genetic condition in which an enzyme is missing from the body. This leads to a build up of fatty cells that can cause damage throughout the body. For Adrianna, this has led to intense bone pain, low platelet count, anemia, extreme […]
I’m in the midst of a flare-up that has prevented me from finishing this week’s episode, but I have some news that felt worth sharing! I decided to release this short update to let you all know what’s going on.
Lily is a grad student researching human development and culture, focusing on how cultural mindsets around disability impact infrastructure. She was born with a rare connective tissue disease called Stickler Syndrome, which is likely the root cause of a constellation of health challenges she has faced throughout life. In second […]
Claudia Alick is an activist and influencer with a transmedia social justice practice, creating spaces for entertainment, education and empowerment by and for marginalized communities. While working as a disability advocate in 2009, Claudia found themself suddenly experiencing what they describe as mysterious level 10 pain, accompanied by mobility issues […]
Kristen lives with a rarely talked about disease called hyperhidrosis, which causes excessive sweating from the moment she wakes up to the moment she goes to bed. This includes the usual spots people sweat such as under arms or the low back, but also places you wouldn’t expect such as […]
In her new novel On the Bank of Oblivion, author Emma G. Rose explores her own history with chronic illness through the lens of contemporary fantasy. At 16 Emma was diagnosed with chronic fatigue syndrome (CFS), now referred to as myalgic encephalomyelitis (ME). It all started with a tickle in […]
In September of 2020 Jennifer came down with a serious illness. Naturally she assumed she had COVID, but repeated tests kept coming back negative. Her illness lasted an entire month, and she didn’t return to full health afterwards. She continued to have extreme fatigue, body aches, sore throat and headache. […]
Lindsay and Stu met in an online recovery program for myalgic encephalomyelitis (ME), more commonly known as chronic fatigue syndrome (CFS). This is a debilitating disease that encompasses a wide range of symptoms including brain fog, headaches, post exertion malaise, and bone weary exhaustion. While many people (including doctors) often […]
Pris is a 4th generation circus performer and entertainer who has worked in costume design and staged weapon play. She grew up as a very physical child, filling her days with dancing, baseball, basketball and more. She was familiar with the feeling of a normal bone break, and the subsequent […]
At 29 years old, Zac’s lifelong mysterious illness would finally come in to focus. He had always believed something was wrong in his body, but his religious family insisted he pray away his ailments without allowing for traditional doctor visits. He grew up to become a youth pastor in a […]
Grace first contracted COVID-19 in October of 2020, having a fairly serious infection that almost required hospitalization. She caught COVID again just a month later, likely from a visit to the hospital. These back to back infections seemed to trigger an avalanche of health issues. Throughout 2021 she would be […]
Sara was eager to see the world while growing up in a small town, and rushed off to join the army right after high school. She entered basic training in 1998, the same year a massive campaign rolled out to vaccinate all military service members against anthrax. As a young […]
Stacy has been diagnosed with two chronic illnesses, but getting those diagnoses was an uphill battle. In 2019 she started experiencing extreme exhaustion, brain fog and weight fluctuations, but repeated visits to multiple doctors revealed nothing. In her tenacity to uncover the truth she started researching potential tests to request, […]
Andi and Jesse are back from their month of traveling, but things didn’t quite go as planned. They share stories from their trip to Maine for a wedding, followed by Tahoe where Andi unfortunately came down with covid. Andi shares her frustration with a series of difficult events in her […]
Katherine has been chronically ill her whole life, but didn’t realize it until the situation became debilitating in college. She was always a flexible kid, able to twist, contort and bend in all sorts of unusual ways. In high school she started experiencing chest pain and heart palpitations, but was […]
Kristy has been dealing with constant anaphylactic reactions since she was 19 years old. The first time it happened was at a restaurant, when she started projectile vomiting for no apparent reason before going into shock. At the emergency room she was accused of drug seeking behavior, even though she […]
Aimee’s first psoriasis breakout occurred when she was just 12 years old. She was at a sleepaway camp, where something about the change in environment triggered an outbreak of plaques and scales all across her scalp. Her symptoms would come and go for the next several years but remained manageable, […]
Danielle’s harrowing chronic pain journey started with one bad olive. She broke a molar on an unexpected olive pit, requiring surgery to remove the remaining fragments of tooth. The dental surgery went very poorly, with the dentist removing significant amounts of bone and even breaking into the sinus cavity. Danielle […]
When Ashley scheduled an interview for the Major Pain podcast to discuss her chronic illness, she was prepared to talk about living with an undiagnosed disease. But to her shock, just weeks before recording her interview, a rheumatologist officially confirmed a diagnosis. Ashley found herself looking back on her life […]
Kristin has lived with pain since she was 9 years old, a journey that has taken her through chronic migraines, celiac disease, covid complications and remaining medical mysteries. As a child she would experience tingling pain in her head, often accompanied by visual disturbances, nausea and vomiting. Shortly after these […]
As a chronically ill child, Ilana was repeatedly accused of faking her illness when seeking medical care. Doctors refused to dig deeper into why this particular child was consistently afflicted with bacterial infections and viruses that took abnormally long to heal, choosing instead to blame the parents or Ilana herself. […]
Amanda grew up experiencing constant trauma. Her mother was deeply abusive, to the point that Amanda’s father was given custody at 6 years old. He moved the family to California and joined a religious cult, where Amanda would continue to suffer abuse with nowhere to turn. Having lived through emotional, […]
Brandy grew up knowing she was different. She struggled both socially and physically, having problems picking up social cues while constantly experiencing injuries and joint dislocations. When seeking help she was disbelieved, shrugged off, or accused of drug seeking behavior. Brandy tried to push through and be strong, but her […]
Many children beg their parents for a pony, but Caitlin actually made that dream a reality. She wasn’t allowed to have a pony until proving she could afford one and look after it by herself, so as a teenager she bought one in secret, finally informing her parents 10 months […]
This week we are celebrating the one year anniversary of the Major Pain podcast, kicking off the second season of the show by catching up with previous guests! India and Brooke each have a new diagnosis that offers some clarity, while still leaving big picture questions unanswered. Cammie has found […]
Misty is a 43 year old massage therapist and artist with a complex medical history. Multiple motor vehicle accidents triggered a cycle of chronic pain, including a trauma induced lipoma in their low back that had to be surgically removed. Even with constant sharp pain in their right temple, their […]
Tiffany had her first seizure at 16 years old. She had gone to bed after studying for a history test, and woke up the next day on a gurney bound for the hospital. This first seizure caught her completely by surprise, and for years seemed to be some sort of […]
Growing up in the UK, Emma received care and services that helped her adapt to life with cerebral palsy. For some patients this disease affects cognition and neurology, but Emma was born with a less severe form causing mostly physical impairment. She was a bit clumsy and fell more often […]
Emily has been having mysterious seizures since she was 8 or 9 years old. Her preliminary tests all came back normal, and none of the adults responsible for her care pushed any further for a diagnosis. Over time the seizures blended into her daily life, becoming a normal occurrence in […]
Anyone who has passed a kidney stone will tell you of the excruciating pain, often citing it as the worst physical pain they have ever experienced. The idea of passing two stones a month indefinitely would make anyone recoil in horror, but that has been Erik’s reality since he was […]
A year ago, Chelyn suddenly lost the ability to keep food down. She was constantly throwing up, losing over 20 pounds in less than 5 months. Chelyn loves food, describing it as her love language, and was utterly confused by the sudden change in her body. Seeking help initially proved […]
Jesse’s mystery illness continues to go undiagnosed, and recent liver biopsy results have plunged the situation into even murkier waters. In this episode of the Major Pain podcast he sits down with his partner Andi to discuss the evolving situation. They discuss the challenges of having an undiagnosed and elusive […]
Throughout Minna’s childhood she always felt different from her peers, as if everyone else had been given a manual on how to function that she had somehow missed. She struggled with sensory overload and difficulty managing social interaction, constantly needing to excuse herself from class to take breaks. As she […]
When Sydni was 7 or 8 years old she started exhibiting symptoms of instability and difficulty walking. At 10 she was diagnosed with Friedreich’s ataxia (FA), a rare inherited neurodegenerative disease. Both of her parents were unknowing carriers of the disease, giving birth to two children with FA. Over time […]
Zoe’s life changed dramatically at the beginning of 2021. In rapid succession she contracted Covid-19, suffered a concussion, and came down with mono. These three major stressors on her body caused a massive flare of chronic pain, functional difficulty and POTS symptoms (postural orthostatic tachycardia syndrome). At first her doctors […]
At just 16 years old, Jonelle was hit by a drunk driver and suffered a broken neck. The only reason she survived is that a friend was driving behind her and rushed to her aid, holding her head in proper alignment to open the airway that had been cut off. […]
Between sophomore and junior year of college, Cheryl’s world turned upside down as she began to feel mysteriously unwell. She started losing weight at a frightening rate, getting down to 105 pounds. Her doctors refused to believe that she was ill, going so far as to call Cheryl’s parents and […]
Towards the end of 2020 Nic’s life took a bizarre turn. He had been a healthy father who enjoyed helping others as an EMT, but suddenly found himself in the midst of his own medical trauma. He started experiencing mysterious weakness and numbness in his legs, soon finding himself unable […]
On the day she was born, Favor suffered an injury that would have permanent repercussions on her life. Her brachial plexus was damaged during birth, causing a condition called Erb’s palsy. The brachial plexus is a network of nerves in the shoulder that carries sensory information from the spinal cord […]
Andrew has struggled his entire life to understand his own mind. He developed learning disabilities as a child, and as an adult was diagnosed with mental health conditions like ADD, anxiety and depression, but the treatments proved ineffective. Dissatisfied with these diagnoses and the direction of his care, Andrew began […]
Kelcie’s life has been frustratingly intertwined with her chronic pain journey. She was originally diagnosed with palindromic rheumatism in her late teens, which would eventually progress into rheumatoid arthritis. In her late 20s she slowly began to experience mysterious widespread pain, accompanied by exhaustion and brain fog. Being diagnosed with […]
India is a retired nurse living with a complicated collection of health conditions. She was born with hypermobile Ehlers-Danlos syndrome that went undiagnosed most of her life, and has experienced several related comorbidities including bronchiectasis. Her pain situation reached a fever pitch due to a Chiari malformation, where part of […]
Michelle has always known that something in her body wasn’t functioning correctly. Throughout her childhood she sought help from her parents and doctors, but was told over and over that her symptoms weren’t real or serious. It wasn’t until her late 20s that Michelle was finally diagnosed with POTS, or […]
Eight years ago Christelle was hit by a texting driver while riding her bicycle. Her head went through the driver’s windshield, fracturing her skull and causing a traumatic brain injury. Three lobes of her brain were affected, resulting in a variety of symptoms including issues communicating, emotional dysregulation and difficulty […]
Achieve Tahoe is a nonprofit organization offering year-round outdoor recreation activities for people with cognitive, sensory, and physical disabilities. They offer a wide variety of accessible activities including snowsports, water skiing, hiking, archery, climbing, equestrian skills, paddle sports and sailing. Their goal is to make these activities available to people […]
Joseph Kibler is a 32 year old actor and writer who was born HIV positive. As a baby he wasn’t expected to live past 4 years old, but an experimental drug trial run by Dr. Fauci in the 80s gave him the chance to thrive. The virus altered the gray […]
Aimée has been experiencing chronic pain and increasingly debilitating neurological symptoms throughout her life. She was first diagnosed with fibromyalgia at just 12 years old, at a time when that diagnosis carried little to no actionable recourse and significant stigma. Due to a lack of helpful doctors in the face […]
Chris Stigas is an entrepreneur and accessibility activist. His first accessibility product, the HandiCup, fills the need for a simple, effective solution for carrying a beverage on a wheelchair or walker. He is the recipient of the 2020 Patti Dawson Activist of the Year Award for his work with Spinal […]
Jimmy and Charles met when they were 18 and 19 years old, just a few years after Charles had been diagnosed with idiopathic ventricular tachycardia (IVT). At 13 he underwent surgery to implant a pacemaker, which regulates his heart rate during IVT episodes when his heart beats chaotically. Charles was […]
Brooke has been diagnosed with over a dozen health conditions. Her diagnostic journey began with relatively manageable diseases including asthma, type 1 diabetes, rheumatoid arthritis and Hashimoto’s disease, but took an intense turn in her late 30s when she experienced heart failure, discovered an adrenal tumor, was diagnosed with diabetes […]
Elias has a trio of chronic pain syndromes, ankylosing spondylitis, Crohn’s disease and fibromyalgia. Ankylosing spondylitis is the least well-known of these conditions, and involves a cycle of inflammation, calcification, scarring and bone formation that can actually fuse vertebrae together over time. Crohn’s disease is a form of inflammatory bowel […]
Nolan had been living with unexplained exhaustion for years before their health flare-up kicked into high gear. Suddenly they were experiencing seizures, weakness, gait issues and vocal/motor ticks. When seeking answers from doctors they were often brushed off, having the reality of their symptoms denied when answers were not immediately […]
Frankie’s life has changed dramatically since developing nonspecific interstitial pneumonia (NSIP). She has the fibrotic form of the disease which causes permanent scarring of the lung tissue, making it harder to get oxygen into her lungs. Describing how it has changed her life she says, “I never sat still. And […]
At 11 years old, it was common for Emily to play in the grassy field of the buffalo farm where she grew up. One day she was bitten by a tick, developing a bullseye rash around the bite. Within weeks she developed a severe fever and hallucinations, but unfortunately the […]
Many people don’t understand the complex severity of crippling social anxiety, and how it can prevent individuals from seeking experiences that might involve social interaction. An individual won’t just experience anxiety in social settings, but before and after those interactions as well. This anxiety manifests as fear of being watched, […]
Many people suffer from seasonal allergies, or have experienced some form of environmental sensitivity in their lives. But for Elizabeth, navigating the world with histamine intolerance means she must be constantly vigilant about the foods and environments she is exposed to. Histamine intolerance sounds like a sensitivity to histamine, but […]
This week on the Major Pain podcast we have a special double episode with Dr. Chris Fowler, a research health scientist with his PHD in clinical psychology. In this wide-ranging discussion, he shares the current understanding of chronic pain as a biopsychosocial condition, affecting not just physical well-being but also […]
Mak lived with health issues for years, but didn’t realize she might have an underlying illness until Covid-19 shut down the world. A musical theater performer and dancer, Mak was accustomed to her body being in pain after strenuous use and assumed it was normal. But when the world went […]
Stacey experiences a wide variety of complex health issues that impact her daily life. Doctors have diagnosed and labeled her with many things, including autoimmune diabetes, fibromyalgia, severe anxiety with agoraphobia, bipolar disorder and schizophrenia. Living inside such a multifaceted symptom picture has been extremely challenging, especially since doctors can’t […]
Six weeks before finishing her residency in internal medicine, Summer started experiencing bizarre neurological symptoms in her left leg. Instead of focusing on becoming a doctor she suddenly became the patient, searching for answers to her mysterious symptoms. Summer was initially misdiagnosed with multiple sclerosis, learning years later that she […]
As a child, Morgan didn’t realize it was unusual to be in constant pain. She thought it was normal for joints to constantly pop out of place, to be hyper sensitive to foods and environmental factors, and to experience constant dizzy spells with risk of fainting. As she got older […]
Imagine performing without being able to see the edges of the stage, or worrying that your eyes could rupture before the show’s end. What sounds like a horrible nightmare was a reality for Sarah, a Seattle based actor living with keratoconus. This rare eye disease causes a bulging and thinning […]
Shawna has been through more than most 29 year olds. She has diffuse scleroderma, also known as systemic sclerosis, a disease characterized by hardening of the skin and potentially life-threatening effects to internal organs. While this disease normally effects older individuals, Shawna started noticing symptoms at just 14 years old. […]
This week we have a community focused episode with Jesse and Andi. First they share an email from listener Morgan, and discuss the ramifications of multiple misdiagnoses when searching for answers to a mystery disease. Then they dive into Jesse’s health update, including progress towards finding a diagnosis and the […]
Many people with chronic pain, undiagnosed disease or invisible illness run into constant barriers when seeking medical care. Doctors often don’t take their symptoms seriously, or assume nothing is wrong when they can’t immediately pinpoint a cause. For people dealing with dynamic illness, understanding the medical system well enough to […]
15 years after her multiple sclerosis diagnosis, Lauren has learned to live comfortably and happily with her disease. She now conceives of MS as a friendly neighbor, something that pops by and says hello from time to time without weighing upon her daily life. Reflecting back on her diagnosis at […]
When Cammie and Evan’s two boys were 1 and 2 years old, Cammie was diagnosed with CREST disease. CREST, also known as limited scleroderma, is an intensely painful rheumatic condition with a wide variety of symptoms that progressively affect the entire body. Cammie was told if she did everything right […]
Three years ago Andi Alhadeff was stricken with a sudden influx of intrusive thoughts, a condition often associated with OCD, along with extreme anxiety and nausea. Blood tests showed elevated prolactin, a hormone produced by the pituitary gland. Further testing revealed that Andi had a pituitary adenoma (or prolactinoma), a […]
Justin Balch has lived many lives, having been derailed several times by chronic pain and health issues. While studying as a saxophone performer he developed a mystery pain that forced him to put down his instrument permanently. He adjusted course and became a professional audio engineer, until a barotrauma caused […]
Like millions of other Americans, Mya suffers from a disabling undiagnosed disease. She experiences constant pain, brain fog, and requires a wheelchair to be mobile. But she is also a viral TikTok sensation, known for her joyous attitude, dance moves and social activism on behalf of the disabled community. In […]
Charcot-Marie-Tooth (CMT) is a rare form of muscular dystrophy that causes damage to peripheral nerves. It manifests in a variety of ways depending on the individual, but generally causes degenerative muscle weakness and atrophy in the arms and legs. For Brandon Sullivan, it has manifested in having to walk painfully […]
Like millions of others in the US, Yael suffers from generalized anxiety disorder (GAD). As is often the case, Yael experienced the effects of this disorder from an early age, her reality being that of constant worry and intruding thoughts of disaster. It was not until receiving her GAD diagnosis […]
Kenny Alhadeff is the chairman of Elttaes Enterprises, the Alhadeff Family Charitable Fund and a Broadway producer. He is also a drug addict and alcoholic, who has been successfully living in recovery for 36 years. In this episode of the Major Pain podcast, Kenny shares the story of learning to […]
As a child, Derek Strachan became interested in the workings of the human body after a doctor’s misdiagnosis almost cost him his leg. That passion to understand health and wellness led him to become a chiropractor, a practice in which trained specialists use their hands or special tools to adjust […]
Like many living in the Pacific Northwest, pediatric nurse Cara Pierson suffers from seasonal affective disorder, a type of seasonal depression that coincides with the winter months each year. As the science around mental health continues to evolve, it becomes increasingly clear just how much we don’t understand about the […]
Lauren Du Pree is a performer, singer and filmmaker, who has been living through intensely painful, widespread eczema flareups for most of her life. Eczema is a skin condition which causes patches of skin to become inflamed, itchy, cracked and discolored. While eczema affects more than 10% of the population, […]
Jesse Mercury has been experiencing bizarre health symptoms on and off for most of his life. His symptoms include cognitive impairment, inability to control his arms and legs, difficulty speaking, muscle spasms, extreme fatigue and chronic pain. Throughout his life these symptoms have become increasingly severe, to the point where […]