Major Pain

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. Jennifer went to doctor after doctor, none of which were willing to help. She started doubting her own experience of illness after repeated medical gaslighting, even as her symptoms persisted. Eventually she found a neurologist willing to listen, who diagnosed her with reactivation of the Epstein Barr virus and subsequent post viral illness. Although Epstein Barr is an extremely common virus that often presents without serious symptoms or complications, there is a growing body of evidence linking it to long term disease such as myalgic encephalomyelitis (more commonly known as chronic fatigue syndrome). Frustratingly, just as Jennifer was beginning to heal from one viral infection, she contracted COVID-19 and developed long COVID.

In this episode of the Major Pain podcast, Jennifer shares her experiences with back to back post viral illnesses and her subsequent recovery. Jennifer also has two preexisting conditions, Hashimoto's thyroiditis and celiac disease. Although both conditions had been under control for years, contracting post viral illness made Jennifer re-evaluate their impact on her overall health. She discusses the difficulty of raising two children inside protracted illness, when normal activities proved exponentially harder. Her approach to recovery included pacing, managing stress and incorporating movement every day. Just weeks before recording this interview Jennifer finally crawled out of being chronically ill, a year and a half after her initial Epstein Barr reactivation. Although she does not know why her illness suddenly lifted, she is more grateful than ever for good health.

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 brush off ME/CFS as "just being tired all the time", people like Lindsay and Stu know the truth is far more complicated. This disease can bring your life to a crashing halt, forcing many to leave work and focus solely on recovering enough energy to function. There is a growing body of evidence pointing towards a connection between ME/CFS and post viral illness, suggesting that some individuals will develop long term effects from common pathogens like the Epstein Barr virus. But while the scientific community scrambles to catch up, individuals with chronic fatigue are left to fend for themselves in search of recovery. To that end, Lindsay and Stu have teamed up to create the Post Viral podcast, a show discussing the complicated road of living with ME/CFS. On the show they share tips from their experiences, spread awareness, and build much needed community around a difficult disease.

In this episode of the Major Pain podcast, Lindsay and Stu discuss their personal histories with ME/CFS and tell us about their own podcasting endeavors. Stu has been living with chronic fatigue for the past 3 years, while Lindsay is 6.5 years into her journey. They both went through periods of denial when their health suddenly changed, attempting to push through the exhaustion and brain fog until their bodies forced them to take a step back. ME/CFS is a diagnosis of exclusion, meaning it is assigned to patients for whom no other obvious cause of disease can be found, who also meet the general criteria and timeline for the disease. Since there is no cure and little scientific consensus, Lindsay and Stu have been hard at work collecting any helpful information they can find to share on their podcast. They focus on different aspects of recovery in each episode, filtered through their own experience and creative expression. Their goal is to help others feel less alone in their journeys, and speed up the road to recovery by sharing hard fought information that took years of illness to acquire. You can find Post Viral on all major podcast platforms, or connect with the show on Instagram @PostViralPodcast.

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 healing that should occur. At 20 years old during her first adult job, Pris experienced a traumatic accident in which she was pinned in elevator doors causing bilateral fracturing, breaking everything from her mid forearm into her wrists, hands and fingers. Within 3-4 weeks Pris knew that she was not healing normally. It felt as though her brain and her body were not on speaking terms, and her pain level was not receding. Over the next 18 months Pris would consult with almost 30 doctors, many of whom would brush her off as being hysterical. Years later Pris's recovery is still ongoing, and she has since been diagnosed with a mysterious chronic illness known as complex regional pain disorder.

In this episode of the Major Pain podcast Pris shares her experiences with complex regional pain disorder, a disease that is poorly understood by the medical community. She describes her pain as a petulant child, never knowing when her symptoms will act up. Her situation is complicated by two more chronic health conditions, Hashimoto's thyroiditis and asthma. She shares how her three conditions can interact and overlap, adding extra layers of challenge in managing her health. Living with chronic illness has prompted Pris to find connection with coping mechanisms like special music playlists, and to reconnect with the belief systems of her Blackfeet and Lakota ancestors. She discusses feeling societal pressure to mask or hide her disability as much as possible, especially in the entertainment industry that oftentimes does not make room for accommodation. For anyone else going through anything similar, Pris strongly recommends the importance of having a patient advocate, someone to sit in the room during doctors visits and speak up on your behalf. Although her health journey has been extremely challenging, Pris has been surprised to notice the many ways in which chronic pain has shaped her outlook on life for the better.

The bonus episode for the month of August is now available on Patreon, featuring a huge update about Andi and Jesse's lives! Listen here: https://www.patreon.com/posts/70209325?pr=true

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 Christian megachurch, finding fortune and fame within his community. But during the last few years of his 20s the feeling that something was wrong intensified. He started gaining weight, found himself freezing even in hot weather, and was experiencing weakness and exhaustion while his skin was slowly turning yellow. In desperation he went to a naturopath, who took one look at his blood pressure and rushed Zac to the hospital. There it was discovered that Zac was in full renal failure, with only one third of the blood volume normal to someone his size. Due to a congenital defect, his kidneys had ballooned to the size of footballs and become riddled with cysts while completely shutting down. He was immediately given 7 blood transfusions and started dialysis, a process which filters excess fluid, waste and toxins from the bloodstream. When doctors told him his life would never be the same, Zac couldn't help but feel relieved that a lifetime of intuition regarding his health had been validated.

In this episode of the Major Pain podcast, Zac walks us through his incredible journey surviving renal failure and his subsequent kidney transplant. He explains how these experiences intertwined with his decision to leave his megachurch behind and find a new path. For almost 3 years he survived without kidney function while on dialysis, and it was during those long hours of forced stillness that Zac began to question his relationship to the church. The companionship of other dialysis patients showed him ways of life and reality outside his religious upbringing. But even while his religious faith was being shaken, the church community rallied behind him with several shockingly generous offers to donate a kidney. Zac ended up receiving a kidney from a fellow youth pastor and close friend, giving him the opportunity to once again live a mostly healthy life. As a transplant recipient Zac became the custodian of an incredible gift, an organ that requires a lifetime commitment of care, requiring immunosuppressant medication every 12 hours to prevent rejection. Zac shares the complicated feelings of receiving so much support from his church community, while also becoming disillusioned after realizing the megachurch dogma was designed to profit those in charge at the expense of the congregation. His decision to leave opened up new pathways towards happiness and fulfillment, while severing not only financial security but countless relationships both personal and professional. Still, while looking back on everything he's experienced, Zac considers kidney failure to be the moment that made his dream life possible, allowing him to let go of indoctrination and discover new layers of identity.

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 diagnosed with illness after illness including adenomyosis, developmental coordination disorder (dyspraxia), fibromyalgia, non-epileptic seizures and eventually functional neurological disorder (FND). She would also continue to experience lingering COVID symptoms, most notably chest pain and difficulty breathing. While this was originally classified as post viral illness, when her condition did not improve she was slowly transitioned into being diagnosed with long COVID.

In this episode of the Major Pain podcast, Grace discusses her difficult adjustment into a life of chronic illness triggered by her COVID infections. Her doctors believe that many of her current conditions have been present all along, but were invisible until COVID caused them to flare. Since her situation has become so complicated, many doctors are unwilling to take any action in fear of making the situation worse. This has proven to be one of the most difficult aspects of her medical journey, repeatedly facing denial of her requests for help. Grace describes her initial resistance to purchasing her first cane, recognizing she needed mobility support. However, seeing how much help a mobility aid could provide, becoming an ambulatory wheelchair user proved an easier transition. Grace is focusing on filling her days with as much joy and positivity as possible, while continuing to face an uphill battle fighting for doctors to even try to help. Almost two years in she is dismayed to have no resolution or solution in sight, but continues to push for help and search for potential new avenues of care.

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 recruit Sara received this vaccination without hesitation, trusting the military to put her best interests first. Unfortunately, this vaccine had not been properly tested for the intended use of protecting against inhaled anthrax, and was manufactured with inadequate quality control. This topic would be the subject of 13 congressional hearings just a few years later after many service members had developed adverse reactions, and many more were dishonorably discharged for refusing the vaccine. Lingering questions remained about a potential connection between the anthrax vaccine and Gulf War illness, a mysterious multi-system disease affecting a disturbing amount of veterans, and yet this vaccine continued to be administered. Sara experienced an adverse reaction after her first dose, but continued to receive additional doses over the course of her military career. Eventually, she was medically discharged with a diagnosis of vaccine immunoglobulin and antisera reaction, officially recorded as being disabled due to her reaction to the anthrax vaccine.

In this episode of the Major Pain podcast, Sara shares her individual journey living through an extremely unfortunate moment in American history. She is frustrated and angry with the US Government, not just for administering an unsafe vaccine but for refusing to conduct research into understanding exactly what went wrong. Sara has been diagnosed with over 25 conditions including more than 60 symptoms, including facial fasciculations, autonomic neuropathy, POTS, ITP, Raynaud's syndrome and fibromyalgia. She has found solace in connecting with other similarly affected veterans, building a community and charity focused on promoting further research. She had hoped to spend 20 years in the military while working towards becoming a CIA agent. Although her career was cut short and she continues to face chronic health challenges, her drive to fight for herself and her fellow veterans has not been diminished.

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, eventually hitting the nail on the head when she asked for Hashimoto's antibody testing. After confirming this diagnosis, she turned her attention to the extreme menstrual pain she had been experiencing most of her life. Doctors had continually brushed it off as normal, even though she had needed prescription pain medication as young as 15 to survive her periods. She continued to research potential options and ask questions, eventually meeting with an endometriosis specialist. Oftentimes the only way to confirm endometriosis is to perform exploratory surgery, which this specialist recommended. After deliberating her options Stacy went forward with the surgery, during which endometriosis was confirmed.

In this episode of the Major Pain podcast Stacy discusses her battle to get diagnosed, and the subsequent relief of receiving appropriate care for both her illnesses. For Hashimoto's disease she was originally prescribed levothyroxine, which unfortunately did not work. She moved on to a functional medicine doctor who prescribed Armour Thyroid, a medication made from desiccated pig thyroid. Mercifully, this medication allowed her thyroid to function correctly, and her Hashimoto's symptoms began to dissipate. She experienced similar relief after undergoing excision surgery for endometriosis, feeling massive relief once she had healed. However, since there is no cure for endometriosis, Stacy knows more surgery is likely in her future as some of the pain has begun to return. Since she lives with two chronic illnesses, it can be difficult for Stacy to know which symptoms are caused by which disease. She discusses the overlap of her two conditions, since people with endometriosis are at increased risk for thyroid dysfunction. She is deeply frustrated by the repeated denial of her pain by multiple doctors, knowing she would never have found relief without continuing to push for answers. However, she is also deeply grateful to have finally found doctors willing to listen, taking action instead of denying care.

Our bonus episode for the month of July is now available to all subscribers on Patreon! Listen here: https://www.patreon.com/posts/july-bonus-68812030?utm_medium=clipboard_copy&utm_source=copy_to_clipboard&utm_campaign=postshare

Join Jesse for a live discussion through the ConnecTra Society on speaking out about chronic illness with special guests Ilana Jacqueline and Aimee Stephanie Perez, Monday July 25th at 12pm PT.

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 life, including a vocal injury and side effects from the medication used to shrink her pituitary adenoma. Jesse is experiencing the other end of the spectrum, since his new medication regiment has been providing some relief from his chronic illness. They discuss the unexpected shift in the energetic balance of their relationship, while sharing the highlights and misfortunes of their latest travels.

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 told it was anxiety or panic attacks. It wasn't until her mysterious gastrointestinal issues kicked in that things became serious, as she found herself in and out of the hospital with constant nausea, dizziness, and difficulty keeping food or liquids down. While doing research on YouTube she stumbled on a video describing POTS (postural orthostatic tachycardia syndrome) and hEDS (hypermobile Ehlers-Danlos syndrome), both of which resonated with her experiences. She took this information to her doctors and was eventually diagnosed with both conditions, as well as dumping syndrome (or rapid gastric emptying) and rapid small bowel transit. Getting these diagnoses was far from easy, as constant medical gaslighting and the resulting self-doubt created endless barriers.

In this episode of the Major Pain podcast, Katherine discusses her tumultuous diagnostic journey and the lessons she learned along the way. The awareness she has gained around chronic illness has led her to change life goals, now studying to become a therapist for others with long-term disease. She reflects on how quality of life standards should be dictated by the individual, not by doctors imposing their beliefs upon their patients. Katherine has lived through horrifying hospital experiences where her care team refused to believe her complaints, leaving her feeling unsafe and trapped. She has gone through periods of grieving her body while struggling with energy depletion and mobility difficulties, being forced away from her passion of aerial performance or going out with friends. However, with her diagnostic picture becoming more and more clear, she has reached a turning point where medical intervention is finally providing some relief. She shares that while she doesn't know what the future holds, she is focusing on staying in the present moment and making progress one day at a time.

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 was only asking for help figuring out what was happening. After 5 days in the hospital with doctors completely stumped, she checked herself out and began the journey of researching her symptoms on her own. Kristy would continue to experience intense vomiting episodes, becoming incapacitated each time it happened. She also became reactive to airborne allergens, being known to turn pale, become sickly and covered in sweat because someone walked into the room with a bag of shrimp. 10 years into her health journey she was diagnosed with idiopathic cyclic vomiting syndrome, but it would take a total of 13 years to discover that her constant vomiting was allergy related.

In this episode of the Major Pain podcast, Kristy discusses her health journey with extreme allergies. She also has POTS (postural orthostatic tachycardia syndrome), suspected mast cell issues, and adenomyosis, a condition in which extra endometrial tissue grows inside the uterus and into the uterine wall. These conditions interact with each other, causing at least one anaphylactic episode per month as her body triggers an allergic response to her own menstrual cycle. Kristy discusses the extreme frustration of fighting for her own diagnosis, being met with constant disbelief and inaction by doctors. She used to mourn every food that needed to be removed from her diet, but after finally discovering that severe allergies were the cause, her relationship to sacrificing certain foods instantly changed into one of acceptance. Kristy hopes to evolve the way allergens are discussed in society, since they are often the butt of a joke and poorly understood by the medical community. She teaches us that allergy can be a severe and disabling condition to live with, and the lack of external understanding can make these challenges even harder.