Major Pain

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

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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

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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

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/

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.

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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.

PODCAST LINKS
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KYRIANNA 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.

In 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.

Hear her story in this week’s podcast, and see more of KYRIANNA’s work at KYRIANNA.art

PODCAST LINKS
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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

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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
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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
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