Major Pain

Jesse Mercury
Major Pain

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.

  1. Amee is Finally Opening Up About Epilepsy 35 Years After Being Diagnosed

    18 DIC

    Amee is Finally Opening Up About Epilepsy 35 Years After Being Diagnosed

    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.

    53 min
  2. Being Crushed by a Tree Changed Steve Lovelace’s Life Forever

    4 DIC

    Being Crushed by a Tree Changed Steve Lovelace’s Life Forever

    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.

    1 h y 2 min
  3. Announcing the Undiagnosed Disease Fund!

    3 NOV

    Announcing the Undiagnosed Disease Fund!

    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-588023fac387 PlayHere is a video from Andi and Jesse discussing their wedding registry, the Undiagnosed Disease Fund In 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

    53 min
  4. Introducing Guava: A Personalized Chronic Illness Management App

    23 OCT

    Introducing Guava: A Personalized Chronic Illness Management App

    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.

    1 h y 6 min
  5. Defying the Odds: Danielle’s Journey with Cerebral Palsy

    16 OCT

    Defying the Odds: Danielle’s Journey with Cerebral Palsy

    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.

    39 min
  6. Jen From My Spoonie Sisters On How RA Led to Medically Induced Pustular Psoriasis

    2 OCT

    Jen From My Spoonie Sisters On How RA Led to Medically Induced Pustular Psoriasis

    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.

    53 min
  7. Fighting Back Against CFS/ME With Dr. Hoppers

    24 SEPT

    Fighting Back Against CFS/ME With Dr. Hoppers

    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.

    1 h

  8. 18 SEPT

    From Lupus to Fibromyalgia: Kindra’s Evolving Diagnosis

    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.

    59 min
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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.

Información

  • Creador
    Jesse Mercury
  • Años de actividad
    2021 - 2024
  • Episodios
    180
  • Clasificación
    Explícito
  • Copyright
    © Major Pain Podcast
  • Mostrar sitio web
    Major Pain

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