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/distaaybled

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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!

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

PODCAST LINKS
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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.

PODCAST LINKS
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EMAIL: [email protected]
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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/

PODCAST LINKS
WEBSITE: https://majorpainpodcast.com
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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 [email protected] 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

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 [email protected] 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

PODCAST LINKS
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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/

PODCAST LINKS
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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.

Podcast description by Kait Williams @alignedk8

PODCAST LINKS
WEBSITE: https://majorpainpodcast.com
EMAIL: [email protected]
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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

PODCAST LINKS
WEBSITE: https://majorpainpodcast.com
EMAIL: [email protected]
PATREON: https://www.patreon.com/majorpainpodcast
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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

PODCAST LINKS
WEBSITE: https://majorpainpodcast.com
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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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EMAIL: [email protected]
PATREON: https://www.patreon.com/majorpainpodcast
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