Major Pain

As a senior in high school, Genevieve won an essay contest writing about the changes she'd like to see with the stigma surrounding bipolar disorder. This brought her to the attention of a foundation aimed at raising bipolar awareness, and at 19 years old she began touring with a state funded program to speak about her disease. She found herself put on a pedestal as a bipolar success story, although her journey with this disease had been extremely rocky throughout her teenage years.

Genevieve was diagnosed as an adolescent case of type II bipolar disorder around 13 or 14 years old, having already been diagnosed with ADHD earlier in elementary school. She oscillated between periods of depression and hypomania, with so many thoughts in her head it was hard to focus on the present. Her depressive episodes featured low motivation, low self-esteem and feelings of worthlessness, while her periods of mania brought feelings of elation, intense creativity and obsessive focus on certain activities. Genevieve equates hypomania to speeding down the freeway in a fast car. At first it was thrilling, but over time it began to feel like a brick was holding her foot down on the gas, making it impossible to slow down.

Genevieve started trying different medications to see what might provide benefit shortly after her bipolar diagnosis. This process was deeply painful, and forced Genevieve to spend many of her teenage years in a blur of destabilization, as if she was being swallowed by a turbulent sea. At 18 years old she was allowed to try lamictal, a medication reserved for older patients since it can cause a life-threatening reaction and serious side effects. For Genevieve this medication was like magic, finally allowing her to focus on life and the future. Shortly after this revelation she found herself on a state sponsored tour, telling others there was hope in their bipolar journey.

Looking back, Genevieve has extremely complex feelings about her tenure as a spokesperson for a bipolar foundation. People would constantly ask how to be as successful as her or what to do for their struggling children. This was too much pressure for a 19 year old, especially since the narrative she was asked to share was not entirely in her control, and she had just started doing better herself. She feels guilt around peddling the superhero narrative, in which disabled individuals are often propped up for their remarkable ability to overcome their condition, rather than educate about the reality of their struggle. She also wishes more voices than hers had been featured, to add diversity to a discussion that cannot possibly be represented by one voice.

In this episode of the Major Pain podcast, Genevieve shares her experiences learning to cope with bipolar disorder and her complicated feelings around her media involvement. She also discusses developing ulcerative colitis in her late 20s, and the extremely overwhelming feeling of needing to adapt to a new chronic illness on top of what she was already managing. She is currently putting together a radio show for Hollow Earth Radio in Seattle called the Access Hour, featuring the work of artists with disabilities, chronic illnesses, invisible illnesses and chronic pain. If you are such an artist and would like to inquire about having your work featured, reach out to Genevieve at [email protected]. Listen to Access Hour when it premieres on January 29th, available on KHUH 104.9 FM in Seattle or in your web browser at https://www.hollowearthradio.org/listen.

Throughout his life, Douglas had been plagued by random episodes of fever, but they usually passed on their own and he was able to mostly ignore them. That all changed in his late 20s, when a particularly horrible fever took him to the emergency room. Doctors discovered an infection from a grapefruit-sized abscess in his body, which had turned his blood septic and become life-threatening. They also found evidence of past abscesses, which had likely burst and been absorbed into his body on their own. These incidents were the result of Crohn's disease, a revelation that would change Douglas's relationship with his body forever.

After his Crohn's diagnosis, Douglas began the arduous task of trying different medications to find relief. Crohn's is an inflammatory condition in which the digestive tract is unable to absorb nutrients properly and may cause alternating periods of constipation or loose stool, among other symptoms. Finding appropriate treatment was crucial for Douglas, since foods like the tiny seeds on strawberries got stuck in his inflamed digestive tract causing abscesses to form. Unfortunately, none of the medications he tried proved effective, and he continued to feel worse and worse.

Douglas eventually turned to alternative sources of care and decided to try Chinese medicine. After being treated with acupuncture and herbal formulas he noticed quick improvement with his GI symptoms. This led him to study Chinese medicine and become a practitioner himself. He noticed a lack of practitioners that shared his cultural identity, and began serving other Spanish speakers and members of the queer and kink community.

After studying Chinese medicine in Chicago, Douglas relocated to the Seattle area. Frighteningly, he developed DVTs (deep vein thrombosis) in his legs and lungs for no obvious reason. He was immediately put on blood thinners, being told the first 30 days were critical since his clots could dislodge and become life-threatening. This adversity once again fueled Douglas's passion for serving his community, and he went back to school studying mental health and sex therapy. He is now combining his specialties into a holistic practice at Curativo Health in West Seattle.

In this episode of the Major Pain podcast Douglas shares his health journey, while discussing his work in Chinese medicine and sex therapy. He gives us a basic understanding of Chinese medicine, how it can help patients, and what to look for in a practitioner. He also discusses the importance of sex therapy for couples affected by chronic illness or disability, and how open discussions around intimacy can help people live fuller, happier lives.

Find Douglas at Curativo Health: https://www.curativohealth.com/

Self portrait by podcast guest Bekah.

Bekah's mysterious illness kicked into full gear when they were 14 years old. While cooking food one day they suddenly became extremely hot, fell to the floor and realized they were too weak to get back up. They were overcome by strange neurological sensations, feeling like their arm didn't belong on their body while their vision went in and out of focus.

When paramedics arrived Bekah was convulsing on the floor. The paramedics took one look at Bekah and said this was likely anxiety, a diagnosis that would stagnate their medical care for years. As Bekah kept having these episodes and seeking help, doctors would take one look at Bekah's chart and double down on the anxiety diagnosis without running proper tests, even as Bekah's progressing symptoms caused them to leave school and become bedbound. Doctors told Bekah's parents this was the worst case of anxiety they had ever seen, but refused to entertain the possibility they were missing a crucial diagnosis.

In this episode of the Major Pain podcast, Bekah shares their health journey so far. Years into the diagnostic search Bekah's mother mentioned her own history with epilepsy, which led to Bekah's eventual diagnosis with partial aware seizures. However, Bekah's neurologist couldn't account for their myriad of other symptoms, so he diagnosed Bekah with FND (functional neurological disorder) without running appropriate tests to rule out other conditions.

Bekah finally found a PCP with a personal history of chronic illness, who was the first doctor to actually listen to Bekah's story and take their complaints seriously. Bekah was quickly diagnosed with POTS (postural orthostatic tachycardia syndrome) and ME (myalgic encephalomyelitis). This doctor also noted Bekah's hypermobility, and believed they might have a connective tissue disease like EDS (Ehlers-Danlos syndrome). Bekah has been trying to confirm this EDS diagnosis for years, and is still in the process of finding a doctor willing to examine the possibility.

Bekah's list of diagnoses has continued to grow, including hemiplegic migraines, a tic disorder and gastrointestinal issues. They are also an ambulatory mobility aid user, discovering that tools like a wheelchair allow them to live more fully. They are grateful their quality of life has improved since receiving better care, but are still unpacking their anger over past medical treatment. Their hope is that laws can be put in place to prevent doctors from brushing something off as 'just anxiety' without running proper tests. Hear their story in this week's podcast interview.

Find Bekah and their artwork online: https://linktr.ee/Peachiichi

Our bonus episode for the month of January is now available! Sign up on Patreon to gain access.

Annie Vander is a country music up-and-comer, who's latest single 'Falling into Nashville' has been featured on the Music Row Country Breakout Chart. Just a few years ago Annie had no idea that her lifelong musical dreams were about to come true. She had built a career working with animals, first as a vet tech and then with her own pet care business. But in 2019 she suffered a horrible accident that changed the course of her life forever. She took a bad fall on the ice during a storm in Chicago, shattering her wrist. After surgery her injury began to heal normally, but a few weeks later she woke up to excruciating pain and intense swelling. This pain was so severe it could cause her to pass out, and sometimes prevent her from leaving her bed for days at a time. Almost immediately she received a diagnosis of CRPS (complex regional pain syndrome) and was terrified to learn her wrist was stuck in a pain loop. Doctors don't have a clear understanding of why this condition occurs or how to treat it, and Annie worried this pain would never abate.

In this episode of the Major Pain podcast, Annie tells us about her CRPS journey and how it led to her country music career. After being diagnosed she was lucky to find a therapist who had experience with this disease. She was introduced to mirror therapy, in which a mirror was used to see her healthy right hand in place of her left. The idea was to trick her brain into thinking her left hand could move freely and without pain, in the hopes of harnessing neuroplasticity to break out of her pain loop. She also began to reconnect with her childhood love of music, spending many hours singing along with her karaoke machine as a form of distraction therapy. Slowly but surely she began to make progress, feeling that her early diagnosis, knowledgeable therapist and positive attitude all contributed to her eventual remission. This harrowing ordeal lit the fire under Annie to pursue music wholeheartedly, soon finding success in Nashville and beyond. She wrote 'Falling into Nashville' as a metaphor for falling into music after her recovery, bringing her resilience and positivity to the radio waves.

Find Annie online at https://annievandermusic.com/

While working as a hairstylist, Merideth was repeatedly exposed to chemicals that released formaldehyde. Eventually her health collapsed, and she found herself unable to continue working. Doctors recommended avoiding future exposure, but this proved insufficient as Meredith's issues with chemical sensitivity began to expand exponentially. She became chronically ill, housebound and often bedbound, losing all tolerance to common chemicals found in our daily lives. Simple things like a truck driving by or residual fragrances on her partner's clothes would trigger an episode. Doctors were unable to help and naturopathic options proved insufficient. She became increasingly desperate to find some form of successful treatment.

In this episode of the Major Pain podcast, Merideth describes how she eventually stumbled upon neural rewiring as a potential avenue towards recovery. This process, also called brain retraining, involves finding purposeful ways to elevate your mood and calm the nervous system, building sustainable neural pathways that can lead to long-term benefit. It is akin to walking down a path in a forest over and over until that path becomes well-trodden and easier to navigate. Desperate to try anything, Merideth went to an in-person rewiring program and noticed immediate benefit. This process gave her a sense of agency over her own recovery, which built over time as her symptoms improved. Now Merideth is 80-90% recovered, and feels that neural rewiring is the main catalyst in her success.

In 1998 Bella was severely injured during childbirth. Her doctor accidentally stepped on the pedal to raise the table she was strapped to during a C-section, causing her feet to raise and neck to lower. She immediately complained of extreme neck pain, but was sent home in a disassociated state after delivery. Bella continued to seek care for debilitating symptoms including vomiting, difficulty using her arms, visual disturbances, flu-like symptoms and constant neck pain, all while struggling to care for her newborn child. For 5 years doctors of multiple types completely ignored or brushed off these complaints, either throwing pills at her or saying this was just her milk coming in. Eventually she lost the pulse in both arms, while losing control of her fingers. A doctor did an X-ray of her neck and shoulders, discovering that her vascular arteries on either side were being clipped because her muscles were so swollen. He diagnosed her with thoracic outlet syndrome (TOS) and recommended immediate surgery. During the procedure this doctor discovered that her neck muscles were three times the normal size, so he took it upon himself to shave them down without consent. Although this surgery corrected Bella's TOS, she began to experience extreme decline from the rest of her symptoms.

In this episode of the Major Pain podcast, Bella shares her first-hand account of surviving an ordeal that has been written up in the medical textbook titled "Handbook of Pain and Palliative Care". She eventually found a doctor willing to listen to the extreme symptoms she was experiencing, who performed a flexion/extension MRI. He discovered a cervical fracture and rushed her into emergency surgery to correct the issue, in awe that Bella had survived for 5 years with an injury that easily could have resulted in paralysis or even death. The previously discovered swelling in her neck muscles had been caused by her body attempting to build a brace to protect this fracture. Bella describes her horrific treatment by multiple doctors as "a chess game of psychological warfare," and still experiences complex PTSD from the injuries and misdiagnoses she received. Unfortunately, this is one of several extreme medical incidents in Bella's life, also having survived a traumatic brain injury (TBI) that required her to re-learn to walk, talk, chew and swallow. Through everything she has survived, Bella says, "the hardest pain has been the 30 years of gaslighting (and) abuse by every facet of the medical system."

Find Bella's artwork at https://belladolores.wixsite.com/belladolores

The December bonus episode of Major Pain is now available to our community of listeners on Patreon. It features Andi and Jesse discussing their recent trip to Disneyland, where Jesse navigated the park in a wheelchair for the first time. Click HERE to listen.

Vocational rehabilitation (voc rehab) services are available in every city of the United States, but many qualifying individuals are unaware of this pathway towards long term employment. These services are designed to help people with diagnosed physical and intellectual disabilities, mental health challenges, and some chronic illnesses to find and maintain employment, or seek new jobs when necessary. Voc rehab is funded through federal grants, making it available to individuals in need across the country. To get started with voc rehab, a simple internet search for your local office is all it takes.

In this episode of the Major Pain podcast we are joined by Eva, a professional vocational rehabilitation counselor. She introduces us to the main concepts of voc rehab, describes the process of getting started, and sets expectations for what services may entail. Counselors like Eva connect clients to multiple other services including career exploration, functional capacity exams, benefits counseling and higher education, all of which can help find the best fit for employment. She helps people make decisions based on their career goals, take steps towards achieving long term dreams, and provide support for a wide variety of employment outcomes. Vocational rehabilitation is a deeply individualized field, so services will look very different from person to person. In this discussion we hope to give you a broad overview of what voc rehab can offer, to determine if these services are right for you.

Andi and Jesse share updates from their recent travels to New York and Florida, plus both of their health situations including Andi's vocal injury and Jesse's continued quest for a diagnosis. Jesse has seen significant improvements in his mobility, while being evaluated for mast cell activation syndrome (MCAS) and small fiber neuropathy.

Heather has accumulated an overwhelming number of medical diagnoses, including Sjogren's disease, vasculitis, SLE lupus, new daily persistent headache disorder, small intestine bacterial overgrowth (SIBO) and endometriosis. At 20 years old her boyfriend (who is now her husband) sat her down to say she was sick and needed to go to the hospital. She had been in pain every day, got sick every time she ate and could barely go to work. This intervention was an awakening that she had been living with a chronic illness, and the beginning of her search for a diagnosis. It would take 8 years to find a doctor willing to listen to her, without dismissing her claims and shooing her out the door. At 28 she was diagnosed with vasculitis and Sjogren's, and over the next few years her list of diagnoses would expand.

In this episode of the Major Pain podcast Heather talks us through her diagnostic journey, teaches us about her diseases from a first hand perspective, and shares how this adversity inspired her creativity. Heather became determined to create purpose from her suffering and turn her pain into something positive. The result was the self-published children's book "I'm the Biggest Helper with Momma's Autoimmune Disease," based on her experiences parenting while chronically ill. She wrote it because her four year old son was having a hard time understanding why she was always sick, but since releasing the book to a wider audience she has gotten meaningful feedback that it has helped other families as well. Her health has taken a turn for the better since finding proper medication to manage her lupus, a brand new drug called benlysta. Heather was one of the first people in her area to receive this drug, which has significantly improved her quality of life. Although Heather's chronic illness journey is a constant struggle, it has taught her valuable lessons about listening to her body, perseverance and gratitude.

Find Heather's book, blog and advocacy at https://www.spoonieselfcare.ca/

In 2012 Simon was dating a lovely young woman who happened to have mono. She warned Simon against kissing her as she might be contagious, but he threw caution to the wind assuming catching mono would only be a temporary setback.

Indeed he did get sick with mono, and was concerned when 6 months later he was still experiencing fatigue. The first doctor he visited diagnosed him with chronic fatigue syndrome (myalgic encephalomyelitis), a post viral illness for which there is no known cure. His condition continued to deteriorate, an experience Simon calls a "slow erosion of everything I considered myself to be." He existed on his back in a dark room where even feeding himself became frighteningly difficult, occupying himself by researching his illness. He sought help from specialists all over the country who charged exorbitant amounts while providing no relief. Simon began to wrestle with his mortality as he withered over the course of 5 years, feeling like it was time to prepare to die.

In this episode of the Major Pain podcast, Simon describes his hellish journey through chronic fatigue syndrome and remarkable recovery. During his research he amassed a list of substances that might offer a road to improvement. He called these his 'silver bullets,' and started trialing them one at a time. One of these was low-dose naltrexone (LDN), an idea he found while scouring Reddit message boards. Naltrexone is traditionally used to help those recovering from drug and alcohol addiction, but Simon found accounts of individuals with chronic fatigue, fibromyalgia, Crohn's disease and other immune disorders finding relief when micro-dosing this drug. Luckily his doctor agreed to prescribe LDN, and Simon began noticing positive effects right away.

Very slowly he started crawling back to a functional life over the course of five years. Towards the end of that time he fell in love, got married and had a child, dreams he had thought impossible during the worst of his illness. Now fully recovered, Simon looks back on his 10 year journey with CFS/ME in awe that he not only made it through, but learned invaluable lessons that reshaped his outlook on life.

Although LDN proved Simon's salvation from chronic fatigue syndrome, it is important to note that he has spoken with other CFS patient's for whom it did not help. This podcast is intended to share his history and spark ideas for other chronic illness patients. It is not intended as medical advice or recommendations, as we are unqualified to do so.