Major Pain

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 size of a tennis ball. His doctors were forced to drain his knee, but during the procedure they noticed the skin ripping in the telltale manner of an EDS patient. Since EDS is a connective tissue disease, it can cause fragile skin that tears easily. This was the first of countless injuries that Kenneth has experienced, collecting many scars along the way. In school he was relentlessly mocked and bullied for his appearance, being told to cover the cuts and scars on his skin. He developed extreme tolerance to pain, but struggled with social interactions that left him feeling like he would never be "normal."

In this episode of the Major Pain podcast, Kenneth shares his story growing up with EDS and how it has shaped his life. As a child he felt like his doctor and family were the only people that understood him. His doctor was EDS literate, teaching him about the disease and helping to stitch him up during frequent injuries. But after this doctor retired, Kenneth found it extremely difficult to get medical care. Many doctors were unfamiliar with his disease, and assumed he was an addict seeking drugs. Kenneth eventually avoided going to the doctor as much as possible, learning to care for his own injuries and manage EDS by himself. As he got older he began to realize that yes, he was different, but he was going to make it. For much of his life there was nobody telling him things were going to be ok, and he hopes to be that voice for anyone struggling through EDS alone.

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 made sunlight feel like his eyes were being stabbed. Eventually a rheumatologist diagnosed him with ankylosing spondylitis, a form of arthritis in which the spine becomes inflamed. Kevin decided to take time away from work and focus on his health, but began experiencing extreme issues with balance, nausea and dizziness. Multiple trips to the hospital resulted in a diagnosis of vestibular migraines, the second-most common cause of vertigo in adults.

In this episode of the Major Pain podcast, Kevin talks us through the intense health challenges he has faced over the past few years. Realizing he would not be able to return to work Kevin began the process of applying for disability. His evaluating psychiatrist put great focus on Kevin's level of anxiety, and his application was quickly denied. Kevin did not know at the time that upwards of 80% of all first-time disability applicants are denied, so this quick denial made him feel extremely invalidated. Starting the appeal process by hiring a lawyer, Kevin was connected to mental health services that eventually diagnosed him as bipolar. While initially shocked, this diagnosis prompted Kevin to reevaluate his life and behavioral patterns. He is now in a place of self-acceptance and self-discovery, while learning new ways to manage his multiple diagnoses while continuing to advocate for his medical needs.

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 diagnosis is fresh, she has been unknowingly battling this disease for over 15 years. Ever since becoming pregnant her mast cells have been activating at the slightest provocation, including environmental factors, diet or even intense emotions. During a minor flare she will experience sinus blockage, puffy eyes, skin flushing and painful welts, while a major flare can lead to anaphylaxis. Finally finding a diagnosis has allowed Pauline to look back over the past 15 years with a fresh understanding, while providing new ways to assert some control over her unpredictable disease.

In this episode of the Major Pain podcast, Pauline shares information about how she manages MCAS, while reflecting on her diagnosis and the tumultuous road that led to it. 15 years of doctors telling her she was imagining things led her to question reality, and laid the groundwork for medical PTSD. She felt brainwashed into thinking she had an OCD skin picking condition, when in fact MCAS was causing painful welts. These welts became so severe that strangers on a New York subway platform thought Pauline had been beaten, assuming she was fleeing domestic abuse with her daughter. She wrote about that experience in an article published in the Washington Post, which you can read here. Pauline's dietary sensitivities have created challenges in finding appropriate treatment for her condition. For example, she can only take benadryl created by a compounding pharmacy, as the gelatin in gel caps from the store bought version makes her throw up. Pauline believes MCAS is vastly underdiagnosed, as the testing is unreliable and awareness of this disease is limited. By sharing her story, Pauline hopes to aid others on their path towards solving their own mast cell mysteries.

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 positive affirmations as a tool to teach self-love and acceptance. She searched for affirmations set to music, but couldn't find anything that was pleasant or catchy enough for children and their parents to share. Steve has been producing hip hop for many years, and the idea was born to create their own affirmations set to upbeat Motown inspired music. Melissa and Steve collaborated on what lessons they wanted to drive home, focusing on aesthetically pleasing imagery and messages of self-love in success or failure. Thus was born The Affirmations Collective, with a four track EP 'My Home is Happy' recently released on Spotify, Bandcamp, Apple Music and all other major platforms.

In this episode of the Major Pain podcast we listen to all four tracks from The Affirmations Collective, while learning about Melissa and Steve's journey raising two children on the autism spectrum. Before their oldest son's second birthday they had begun noticing traits that were different than other children his age. He didn't like being in big groups, was delayed in language, would scream unprompted and had no interest playing with other children. After pushing doctors to evaluate their son, he was diagnosed with autism at a very young age. Both parents were completely unfamiliar with autism, but began wrapping their heads around the wide spectrum of neurodivergence while their son began working with specialists to develop behavioral tools. Their second son was recently diagnosed as being on the spectrum, which has proved to be a completely different experience since every child's needs are unique. Over the years they have learned the importance of structure, priming and organized activities, and provide details on these parenting lessons during this podcast. They hope to share their musical affirmations with other parents raising neurodiverse children, or anyone in need of good vibes throughout the day.

During this episode Steve mentioned a writer who's work helped him understand autism from a first hand perspective. You can find a link to an article here: https://www.vox.com/2015/8/31/9233295/autism-rights-kanner-asperger

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 fatigue and enlargement of the liver and spleen. Throughout childhood she was constantly brushed off by doctors when seeking help, even when one doctor noticed her labs were off. She was accused of laziness when physical exertion was a struggle, or asked if she was pregnant when her organs noticeably swelled. It wasn't until her sister was diagnosed with Gaucher disease that Adrianna's symptoms were finally taken seriously, and she was officially diagnosed at 18 years old. Although this validated a lifetime of knowing something was wrong, the struggle to successfully manage this disease was just beginning.

In this episode of the Major Pain podcast, Adrianna teaches us about her rare disease while sharing the experience of learning to live with it. Once she was diagnosed she began enzyme replacement therapy, requiring a port to be surgically implanted so she could do infusions at home. Unfortunately, early into her therapy the manufacturing process behind this drug changed, but nobody informed her the dosage was now less potent. Adrianna would continue to infuse the wrong dosage for over a decade until the drug manufacturer finally got consent to contact her. Now that she is finally on the right dosage of this medication Adrianna has experienced significant improvements in her fatigue, and her labs have moved in a positive direction. Her chronic bone pain has continued to be a challenge, and she shares the ways in which she manages this obstacle. Although this disease initially made Adrianna sad and embarrassed, the trajectory of her journey has led to a place of acceptance. She isn't sure exactly when she made peace with her disease, but is grateful to have arrived at a positive place.

The October bonus episode for Patreon subscribers is now available! Click here to listen, or sign up to gain access: https://www.patreon.com/posts/october-bonus-72838362

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 grade she had the first of two pharyngeal flap reconstruction surgeries, since the part of her throat that should open and close to produce letter sounds or swallow wasn't moving. Although she was already born visually impaired, at 14 years old she woke up one day to find her left eye was pointed to the left, while her right was still facing forward. From that day on she would experience double vision and constant headaches, with her brain needing to interpret two images simultaneously. She also experiences full body RLS (restless leg syndrome) which has made her classmates believe she was having a seizure. Lily has developed an impressive resilience to these challenges, discovering tools and accommodations to push through and pursue her passions.

In this episode of the Major Pain podcast Lily discusses her health journey, shares information on several rare conditions, and contemplates sociological issues she has encountered along the way. Lily is a self-described nerd who loves Star Trek and video games, who creates content on TikTok discussing and analyzing her favorite media. Although many legally blind individuals have vision of some kind, she is continually accused of faking her disability by ill-informed people. She shares with us the types of accommodations she uses to enjoy her favorite pastimes, including how she focuses one eye on a blank wall while the other views a zoomed in video game screen. She also shares her opinions on ableism in society, and how normalizing disability can create a more equitable future.

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 and random muscle spasming. When an immediate diagnosis proved illusive they entered into the diagnostic program at the Mayo clinic, often regarded as the gold standard for patients with mysterious illness. Claudia's experience at Mayo was mixed, providing some validation but with a frustrating result. They were diagnosed with a myofascial pain disorder of unknown etiology with muscle spasms, which felt like doctors repeating back the symptoms Claudia described without determining any root cause. Fast forward to 2022 and Claudia has just been diagnosed with sarcoidosis, although the implications of this diagnosis are yet to be determined.

In this episode of the Major Pain podcast Claudia talks us through their medical journey so far, including details on their experience at the Mayo clinic, and coping mechanisms they have tried over the years to manage constant pain. Doctors initially insisted they take copious amounts of opiates, but Claudia was unhappy with the loss of mental clarity and abandoned these drugs. Claudia tried lyrica (pregabalin) and was thrilled when their level 10 pain came down to a 3, but soon began experiencing a rare side effect of this drug called aphasia. Claudia would think they were saying one word but outwardly speak another, severely impacting their ability to communicate. Ceasing lyrica resolved this issue, but turned Claudia's constant pain back up to a 10. Now that they have been diagnosed with sarcoidosis, Claudia is undergoing additional testing to understand what that means. This is an inflammatory disease characterized by the formation of granulomas inside the body, but is also a diagnosis of exclusion. That means Claudia's doctors are still digging for the root cause of their issues. Throughout this complicated maelstrom, Claudia has remained a remarkably prolific advocate and creator. They share their valuable mindset of finding bits of joy in each day, and discovering adaptations that allow them to continue their work in spite of a medical mystery.

Find Claudia's social justice work at https://callingupjustice.com/

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 her hands, feet and face. From a young age Kristen knew there was something different about her body. She remembers carrying around a purse full of tissues as a kid, wearing mittens to soak up sweat in class, and slipping off the monkey bars because of wet palms. She was officially diagnosed with hyperhidrosis at 14 from a dermatologist who had barely heard of the disease, offering very little in guidance or answers. It would be a long, lonely road for Kristen to teach herself how to manage this disease, and finally learn to accept it as an indivisible part of her.

In this episode of the Major Pain podcast, Kristen discusses her journey with hyperhidrosis while sharing tips and tricks to live with excessive sweating. She had to become her own researcher, advocate and cheerleader, and has amassed a wealth of knowledge regarding this disease. She describes using an iontophoresis machine which literally shocks her hands while submerged in water, providing temporary relief from symptoms. Doctors don't even understand why this process is helpful, as the biological mechanism behind hyperhidrosis is not currently understood. Throughout her childhood Kristen was accused of causing her symptoms by being anxious, when in fact it was her poorly understood disease causing anxiety and shame. She learned to hide her symptoms so well that people around her had no idea what she was going through. Starting therapy 6 years ago proved to be a massive turning point, giving her a voice to tell the people around her what she had been living with all her life. Kristen has collected what she's learned at howtohyperhidrosis.com, creating a library of resources for fellow patients seeking help. Finally opening up about her disease has been intensely healing, not only to help minimize the emotional toll of constantly hiding, but to ease the journey of other hyperhidrosis patients with her public activism.

The September bonus episode for our Patreon community is now available! Support Major Pain on Patreon to gain access: https://www.patreon.com/posts/september-bonus-71478103

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 her throat from a respiratory illness that passed through her family. Like the protagonist in her novel, Emma's life was irrevocably altered by this seemingly normal sickness. It triggered post viral symptoms that have persisted for almost two decades. Her novel tells the story of Owen, a teenage boy living through similar health challenges. A mysterious stranger appears in his dreams offering help, but at a cost. The story asks the question, what would you do to feel better?

In this episode of the Major Pain podcast, Emma discusses her history with chronic illness and how it informed her latest literary work. Being diagnosed as a teen brought unique challenges, especially in the early 2000s when her disease was not taken very seriously. Now that long COVID has brought post viral illness into the mainstream, Emma is finally finding it easier to discuss her situation publicly. She has made great strides in learning to work within the physical confines of ME/CFS, accepting the limitations her illness presents and managing the best way possible. By going the indie route, she has created a work/life balance that fits within the needs of her body. In 2018 she founded Imperative Press Books through which she has published four novels and an anthology, while also working as a freelance writer and co-hosting the Indie Book Talk Podcast. By sharing her personal and fictional stories she is reaching out to others living through chronic illness, showing they are not alone.

Find Emma's work at https://www.emmagauthor.com/