By Lauren Freedman (she/her)
5
9797 ratings
The podcast currently has 157 episodes available.
Overview
Last episode as of Dec 2023
Emily Ana Levy is a distinguished social impact entrepreneur, renowned patient advocate, healthcare Key Opinion Leader, and acclaimed international public speaker. Emily's journey led her to co-found Mighty Well in 2016. It’s a startup driven by her personal experiences as a patient grappling with chronic neurological Lyme disease and autoimmune conditions, along with the challenges of managing vascular access devices. Mighty Well's direct-to-patient brand offers innovative medical products and comprehensive digital learning on vascular access, empowering patients to confidently navigate their health journey. With an unwavering commitment, Levy and her team have successfully launched seven adaptive medical products, notably the Class 1 FDA-registered PICCPerfect® Pro. Emily and Mighty Well's impact has been featured across various media outlets such as The New York Times, The Wall Street Journal, Who What Wear, The Boston Globe, PBS, Forbes, and more. In 2021, inspired by her transformative healing journey in the Amazon and stepping into her gifts as a seer, medium, and deathwalker, Emily established Hamsa Healing. In her practice, she is dedicated to facilitating clients in experiencing profound healing practices from the Amazon and the spiritual realm — practices that played a vital role in saving her life and putting her chronic illnesses into remission. Currently residing in Providence, the heart of the Ocean State of Rhode Island, Emily finds solace in cold water plunges that invigorate her senses and ground her in the present moment. She cherishes moments at home with her two adopted poodles, a warm blanket, and a cup of tea; valuing introspection over bustling networking events. Emily remains devoted to self-discovery, eager to share her insights with folks who, like her, have felt marginalized within a business and medical system that often overlooks their needs for visibility, understanding, and validation. What started as an entrepreneurial journey to 'turn sickness into strength' has now become one of learning strength from sickness.
Key Links
Mighty Well
Dr. Casey Kelley on UP - Ep 118
Takeaway
Tune in as Emily shares:
* that she’d blocked out a memory of being bitten by a tick at the age of six; she was bitten again at the age of 12, alongside having confirmed EBV
* what her initial symptoms were like
* how she was overlooked because of her age and gender — and initially put on birth control to control her “hormones”
* that she finally found a Lyme-literate NP in her home state when in college — and received the diagnosis of Lyme and tick-borne illnesses at the age of 19
* her additional diagnoses: POTS/dysautonomia, Hashimoto’s disease, CIDP (chronic inflammatory demyelinating neuropathy), C-PTSD, and Gilbert’s syndrome
* that she went to see Dr. Casey Kelley after hearing her episode of the show!
* how her lived experience informs the creation of adaptive devices and wearables for Mighty Well
* how she was able to embody her identity as a disabled person — coming from a family of athletes
* that she had a lot of Lyme support in college, but also felt “othered” in the sense that she had to advocate for her health for the first time
* what a typical day was like for her before remission
* her rumination on the invisibility of her diagnoses — and their few visible signifiers, which included her PICC line and chest port, as well as her occasional use of a cane
* how exhausting it can be to tell people your life story when you live with invisible illness and have to provide validation to others
* the epidemic affecting women in healthcare: acute infections, especially those presenting with multiple and varied symptoms — and how important it is to listen to and include women, both in treatment and in research
* how her family background in textiles informed the Mighty Well product line
* her advice for fellow spoonies and entrepreneurs
* why living near the water is so important for her
* that she has trained her dog, Olive, as a medical alert service animal
* her belief that ketamine therapy saved her life, with regard to the diagnosis of C-PTSD
* her endorsement of plant medicines and herbs, and why she has moved in that direction where her ongoing treatment is concerned
Overview
Hanah Salas is the magic mama of three littles; an energy worker and maker, she is the founder of the first and only CBD wellness company that offers sliding scale pricing on its goods: Open Apothecary/Magic Mama Co.! She started consciously making herbal remedies when she was pregnant with her first child, out of the need to use healthy, natural, safe products for her whole family. Then her mom was diagnosed with Lyme disease and fibromyalgia, while at the same time, one of her twin daughters was born with a heart defect. Her intentions and need to create stronger, more magical remedies was born. She started infusing her products with more love; Reiki, prayers, and high vibrations to aid in healing. Her goal now is to make these products more accessible and affordable. The more she sells on her platform, the more she is able to donate products and services to those in need who cannot afford it.
Key links mentioned in this episode:
Open Apothecary/Magic Mama Co.
Buenqamino/Christina Kantzavelos on UP (Episode 119)
Brujitxs del Barrio Collective
@magicmamaco on Instagram
@openapothecary on Instagram
Lauren’s favorite products:
CBD Salve 150mg
CBD 50mg Pain Bath Bomb
Tune in as Hanah shares:
* how and why she first started creating natural products
* that her mom likely contracted Lyme disease as a child, and was diagnosed with late-stage Lyme when Hanah herself was an adult
* that the one natural remedy that gave her mom any relief from the chronic pain she experienced was cannabis
* how complex it was for her mother to get her Lyme diagnosis
* that her mom had over 50 diagnoses and was on multiple prescription drugs before being diagnosed with Lyme
* how her mom struggled to receive pain medication — and later ended up with opioid addiction
* how CBD helped Hanah’s mom, and also contributed to Hanah’s product line
* how Hanah has built her business with ethics at the forefront — giving away certain plant medicines to those in need, as well as teaching Reiki and sharing her expertise for free
* how her mom’s treatments hit her family financially — and why it’s so important for her that her products be accessible
* why she believes that healing — and access to said healing — are our birthrights
* what Reiki is, and how accessible it can be as a healing modality
* why she also began to access the Akashic records, and how it helped with her daughter’s healing
* why she prioritizes BIPOC, indigenous, and LGBTQIA+ clients in her business
* why she formed a collective to support communities most impacted by historical underrepresentation and marginalization in her healing work
* the importance of addressing grief and trauma in healing work
Overview
At the age of 16, doctors diagnosed Carlos Alvarez as completely blind in his right eye; the sight in his left eye had deteriorated to 73% as a result of congenital glaucoma. When Carlos was 19 years old, he went through eye surgery — but the operation was not successful. He lost all remaining sight, leaving him with permanent sight loss. A person of deep faith, he constantly reframed this experience of loss into one of abundance, telling himself: “sometimes God removes something you never thought you'd lose, to provide you with something you never thought you'd have.” Before losing his sight, Carlos had responded to school bullying by learning Brazilian Jiu Jitsu (known as BJJ by those who practice the sport), a martial art with similarities to Judo. Despite the onset of his disability, and at the encouragement of his cousin, he continued to learn BJJ…and now competes (frequently winning!) as a black belt. He also became passionate about teaching others living with sight loss, helping them improve their quality of life and confidence in their abilities. He now provides BJJ lessons to the blind community through Gama Filho Martial Arts in Miami, Florida, and reminds us that he knows first-hand what it's like to live with a feeling of defenselessness after losing one’s sight; with a fear of falling, getting lost, or the vulnerability of potentially being robbed, struggling to find employment, or being abandoned. In his own way, Carlos has given back to his community through his teaching of the Blind Warriors, and inspires others to take their destinies into their own hands, no matter what level of ability they start from.
Key Links
Key links mentioned in this episode:
Carlos Alvarez
Gama Filho Martial Arts
Takeaway
Tune in as Carlos shares:
* that despite vision problems growing up, he didn’t know he had glaucoma until he was 16 years old
* the day he completely lost vision in his right eye — and how this led to the discovery that he had been born with congenital glaucoma
* his emotional reaction to his diagnosis
* that despite his deep faith, he questioned it when he was first diagnosed
* how martial arts helped him to regain his happiness and confidence
* why Brazilian Jiu Jitsu (BJJ) is particularly adaptable to sight loss: there is no striking in the art, but it’s more of a grappling experience — and, as Carlos tells us, “your hands become your eyes”
* that disability care in his home country of Ecuador is not widely distributed
* the stigma and misconceptions about blindness that he strives to shift in his work
* the importance of independence to him, as a person living with sight loss
* how he is leveraging his skill in BJJ to help others with visual impairment to face their fears
* how his work has taught him to break through his own limited mindset
* that he has a wonderful guide dog to aid him in his independence
* instances of prejudice that he’s encountered when out with his service dog
* his hope for the future of inclusion in his sport
CW/TW: this episode includes discussion of violence, both physical and gun-related, as well as in-depth conversations about abuse, trauma, suicide, drugs, and alcohol addiction. It also includes mention of adoption and body weight, and contains some strong language.
Overview
Michael was born to a hyper-abusive, drug-addicted mother who cut his finger off at four years old…lived with what he calls “a step-father you pray you never have,” and was frequently houseless and living in poverty. A member of the Mormon Church, he was also molested by a fellow parishioner. At the age of 13, he ended up in the custody of a racist grandmother who pushed him into an identity crisis — and quickly turned to drugs and alcohol to survive continuing abuse. “Between the guns, drugs, crime, and poverty…I was facing life as just another statistic,” he shares. Despite being diagnosed with multiple learning disabilities and not graduating high school on time, he found success in corporate America in his early 20s. But the success only made things worse: Michael found himself “morbidly obese,” high and drunk daily, experiencing debilitating panic attacks, rage, and even attempting suicide. And then, he had his Mirror Moment: he found his inner power and chose to do whatever it took to work through his childhood trauma. He says that this is when his life really began. Michael is now the author of the best-selling book Think Unbroken and is a coach, mentor, and educator for adult survivors of child abuse. He spends his time helping other survivors get out of "The Vortex" to become the hero of their own story and take their lives back. Michael hosts the Think Unbroken podcast, teaches at Think Unbroken Academy, and is on a mission to create positive change in the world.
Key Links
Key links mentioned in this episode:
Think Unbroken
Michael’s book
Michael’s podcast
Takeaway
Tune in as Michael shares:
* that he first got high at 12 years old
* that at 15, he was kicked out of school and put into a “last chance” education program
* that his family and friends — and he himself — had been to prison and arrested
* his rock bottom moment: putting a gun in his mouth — and not pulling the trigger
* how his Mirror Moment took shape: that he realized he was living the stories that others had told him about himself, and moved out of his breakdown
* why he got serious about therapy and healing his trauma — both personal and generational
* how he got into self-development and writing
* that as he sees it, there are two kinds of people: those who are kind to themselves, and those who aren’t
* how to shift the pendulum from thought and action into self-actualization
* that the idea of healing all starts with action — and making the choice to lead a more fruitful life
* why he doesn’t believe that compassion and forgiveness are mutually exclusive — and why he believes forgiveness needs to be earned
* why it’s important for him to lead with what he can actually control in his life each day
* what “self-care” looks like for him
* that he lives with an autoimmune condition (postural orthostatic tachycardia syndrome, or POTS), and has to be mindful of it as he moves through the day
* that he has also experienced SIBO (small intestinal bacterial overgrowth), which at one stage contributed to intense brain fog
* how physical and mental health are intertwined, and how he counteracts inflammation and stress in his body to be his best
* how he’s found freedom in releasing himself from what others think of him
* what authenticity means to him
* that you are not responsible for the things that happened to you — but you have to acknowledge that they happened
* the importance of community, connection, and commitment
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Overview
Gigi Robinson: if you don’t already know her, then welcome to the party! From making history as a finalist in the Sports Illustrated Swim Search, to her advocacy in the chronic illness and body positivity spheres, all the way to NFT research and navigating life as a small business owner — she truly does it all. With features in Bustle, Business Insider, Forbes, and Vogue Business, Gigi combines beauty and brains as GenZ’s forefront thought leader in the content creation space. Having been diagnosed with Ehlers Danlos Syndrome (EDS) at the age of 11 (and more recently diagnosed with endometriosis), Gigi knows how hard it is to be different. However, her lively spirit, positive demeanor, and elevated work ethic have made her and her Spotify Live Podcast “Everything You Need Is Within” an instant hit. Listeners of her podcast have the opportunity to learn how to become their own advocates, challenge the status quo, and dominate in professional settings. When she is not working on her podcast or posing for national campaigns, Gigi can be found working on her newsletter, “The Creator Chronicles.” Her latest project is aimed at documenting life as a young woman with a chronic illness and unlocking behind-the-scenes tips and tricks for rising content creators. With so much more on the horizon including an upcoming speaking tour, creative production for brands, advising brands and a recently-released book, A Kid’s Book About Chronic Illness, Gigi is just getting started.
Key Links
Key links mentioned in this episode:
Gigi on Insta
Gigi’s podcast
Gigi’s website
Gigi’s book
Gigi in SI Swim
WEGO Health
Calm App
Oura Ring
Takeaway
Tune in as Gigi shares:
* how she was originally diagnosed with EDS, and how it’s shaped her life
* the role that therapy has played in her healing
* how and why she developed disordered eating behaviors
* how her EDS diagnosis dashed her hopes of pursuing a career as a competitive swimmer
* a discussion about the fear that comes up for her around exercise: both because she fears hurting herself (either in the exercise itself, or during recovery), but also because of her history of body dysmorphia
* how body image ties into the diagnosis of a chronic condition — and how it inspired her to get into the public discussion of body positivity
* some of the holistic practices that have soothed her nervous system and helped her reduce stress
* what it means to be an influencer with chronic illness — and what it might mean if remission occurs
* why it takes time to learn how to communicate with your loved ones about what you need for living well with a chronic condition
* how living with a chronic condition directly impacts mental health
* what it’s been like for her to navigate the pressures of being a full-time Master’s student with the realities of living with a chronic condition — and what the accommodations process was like
* what her career path has looked like as a result of her physical needs
* why she loves water aerobics
* what practices she invests in daily for her physical and mental health
* a gut check on evolution and acceptance
* why it’s important to track your symptoms
Transcript
Transcript coming soon!
Overview
Jared Walker founded Dollar For in 2012 in Portland, Oregon. Now a national non-profit crushing medical bills and making charity care known, easy, and fair, the organization was born out of a desire to help folks in medical crisis after Jared witnessed his own family's experience with — you guessed it — crushing medical debt. Dollar For eliminates said medical debt by empowering patients and advocating on their behalf, because, as they believe: a medical crisis should not lead to a financial crisis. The organization helps patients check if they are eligible for financial assistance at their hospital, prepares and submits applications, and eliminates those medical bills — for free, no strings attached. Jared is on a mission to pulverize as many medical bills as he can while educating patients and empowering patient advocates.
Key Links
Key links mentioned in this episode:
Dollar For
TikTok
Takeaway
Tune in as Jared shares:
* why he founded Dollar For in 2012, after his own family underwent crushing medical debt
* why he thinks it’s truly ridiculous that medical crises in America usually also bring financial crises along with them — and how this doesn’t serve patients at all
* how he learned about charity care programs (enforceable as a result of the adoption of the Affordable Care Act, or ACA)
* what charity care is — and why enforcing this program can save patients MILLIONS
* how medical debt can negatively impact our credit and force many into bankruptcy
* why he took to social media to spread the message about charity care
* why he thinks charity care flew under the radar for so long — and why it continues to do so
* why federal minimum income thresholds are different from state-to-state, and how this can affect access to charity care
* what the federal threshold limit is on the use of charity care (how much time patients have to utilize this bill payment option — 240 days!)
* what accountability looks like between state and federal agencies and hospitals — and how Dollar For often stands in as an intermediary
* that putting hospitals on blast on social media has often been a more effective tool to enforce charity care than letters from legal sources
* why social media patient activism makes Jared hopeful for the future
* his estimate that 30% of Americans would qualify for charity care based on income alone
* where Dollar For’s bill forgiveness tally was at in April of 2022: $16 million (as of this episode release, they’ve surpassed $28 million!)
* how he works to match his volunteers’ strengths with patient needs
* the demographics of the patients Dollar For works with: largely the elderly, and individuals who speak English as a second language
* how so many hospitals game the system to hide charity care from patients in need
* Jared’s take on medical PTSD — and how medical debt contributes to the experience
* how Jared sees the future of healthcare costs in America — and that the solution is to empower patients
* practical tips for asking hospitals to consider your bill for forgiveness under charity care: write a letter!
* Jared’s advice on NOT becoming complacent about large medical bills as they arrive
* why NOT to put your hospital bill on a credit card
* that if you’ve paid bills on a payment plan and later find out your bill was eligible for charity care — you are eligible for a FULL REFUND
* how Dollar For was first invited to the White House by Vice President Kamala Harris (they continue to be invited to this day, and are working with stakeholders to enforce and create awareness of charity care programs on a broader level)
Sponsors
This episode is sponsored by Gena Chieco Coaching. Get 10% off Executive & Life Coaching using code INVISIBLE! With a background in psychology and law, Gena inspires clients to step into their best lives by helping them access their inner strengths, clear the cobwebs holding them back, and cultivate a dream-big, growth mindset.
Transcript
Coming soon!
Izabella Wentz, PharmD, FASCP, is an internationally acclaimed thyroid specialist and a licensed pharmacist who has dedicated her career to addressing the root causes of autoimmune thyroid disease after being diagnosed with Hashimoto’s thyroiditis in 2009. She is the author of three books on Hashimoto’s: Hashimoto’s Thyroiditis Lifestyle Interventions for Finding and Treating the Root Cause, Hashimoto’s Food Pharmacology, and Hashimoto’s Protocol, which became a #1 New York Times bestseller. Her latest book, Adrenal Transformation Protocol, was released on April 18th, 2023. The book focuses on resetting the body’s stress response through targeted safety signals and features a 4-week program that has already helped over 3,500 individuals. The program has an impressive success rate, with over 80% of participants improving their brain fog, fatigue, anxiety, irritability, sleep issues, and libido. Dr. Wentz currently lives in Austin and Los Angeles with her husband, Michael, and their son, Dimitry.
Tune in as Dr. Wentz shares:
- how she became interested in thyroid health
- what symptoms she experienced when she was diagnosed with Hashimoto’s
- how she applied her pharmacological knowledge to reverse her own Hashimoto’s
- how lifestyle changes (especially nutrition shifts) supported her healing
- how the concept of adrenal dysfunction became a new focus for her — and allowed her to reverse sleep and anxiety issues
- that if you have a thyroid issue, you’re likely also experiencing adrenal dysfunction
- what adrenal dysfunction means: that your body is stuck in a chronic stress response
- what a cortisol rollercoaster feels like
- how ME/CFS and fibromyalgia patients can also experience adrenal dysfunction
- why the adrenal response to stress makes sense biologically — even if it doesn’t feel like it’s serving us
- where the term “adrenal dysfunction” came from — and why it’s an oh so real biological response, despite the naysayers
- why so many people who identify as female live with adrenal dysfunction
- why it’s so important to balance our blood sugars and eat more protein in order to begin to treat adrenal dysfunction
- the success rates of her Adrenal Transformation Protocol, and how it works
- suggestions for supplementation (which should always be reviewed with your MD!)
Key links mentioned in this episode:
The Thyroid Pharmacist
Books
Chris Armstrong, PhD was first introduced to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) through research into metabolomics at the University of Melbourne, Australia. As he delved deeper into his work, he discovered its connection to ME/CFS patients, and empathized so much with their plight – and the lack of resources, funding, and research available to both patients and clinicians – that he made it his mission to continue research in this field in the hope of finding a cure. Since publishing his first ME/CFS metabolomics study in 2015, he has continued research into the disease, spurred on by patients whose stories have moved him. As the Open Medicine Foundation’s Science Liaison, Chris works on collaborative studies with their partner organizations and helps to translate scientific language for the public. He is also a Visiting Scholar at Stanford University.
Key links mentioned in this episode:
Open Medicine Foundation
OMF on Facebook
OMF on Twitter
OMF on Instagram
Tune in as Chris shares...
- how he got involved in ME/CFS research
- his main area of expertise: metabolomics
- that ME/CFS outbreaks can be traced back as far as the mid-19thC, with symptoms commonly related to significant concerns with fatigue, sleep, pain, brain fog, and a 50% loss of general function
- a description of PEM – post-exertional malaise – which is the main component of ME/CFS
- that there are up to 50 symptoms associated with ME/CFS, but the main five are: PEM, fatigue, unrefreshing sleep, cognitive impairment, and pain
- that ME/CFS is highly comorbid with fibromyalgia and other invisible illnesses
- that ME/CFS was originally described as a flu- or polio-like illness; and was first properly explained by the Ramsay definition and given the moniker of “Myalgic Encephalomyelitis”
- that patients need to have ME/CFS for 6+ months in order to receive a diagnosis
- one of the major schools of thought with regard to ME/CFS: that it stems from a dysfunction of stress response in the body; it’s possible, however, that bacteria and other pathogens may also play a role in onset
- that 1 in 200-300 people has ME/CFS
- that ME/CFS is NOT categorized as a rare disease; but it’s treated by the medical community as such – creating stigma through lack of research and understanding
- that ME/CFS has been commonly misdiagnosed as a form of hysteria – both in the past and in the present
- that very few clinicians dig in deep enough with their patients in order to give them an ME/CFS diagnosis – but that burden is not just on doctors, as diagnostics and treatment guidelines need to be standardized in order to support their work
- that the Open Medicine Foundation was built to provide effective treatments for ME/CFS patients
- that meeting patients has inspired him in his work, even from the very beginning
- the desperate need for funding for continued research into ME/CFS
- the politics of funding medical research
- that ME/CFS is often considered to be more a psychological than a physiological illness
- that the National Institutes of Health (NIH) has been more receptive than some Aussie governing bodies when it comes to research into ME/CFS
- the biggest bright spot in ME/CFS: the momentum of funding for research
- OMF’s collaborative research initiatives with Harvard, Stanford, and others
- that ME/CFS could be a collection of several diseases, and not one disease in and of itself
- the importance of specifics in diagnostics
- why medicine needs to be patient-centered
- the importance of pacing in order to avoid a crash related to PEM
Andrew Gurza is an award winning Disability Awareness Consultant and the Chief Disability Officer and Co-founder of Bump’n, a sex toy company for and by disabled people. Andrew uses they/he pronouns and identifies proudly as disabled. Their work has been featured on BBC, CBC, Daily Xtra, Gay Times UK, Huffington Post, The Advocate, Everyday Feminism, Mashable, Out.com, and several anthologies. He was the subject of an award-winning National Film Board of Canada Documentary, Picture This. Andrew has guested on a number of podcasts, including Dan Savage’s Savage Love and Cameron Esposito’s Queery. He has spoken all over the world on sex, disability and what it means to be a Queer Cripple. He is also the host of Disability After Dark: The Podcast Shining a Bright Light on Disability Stories, which won a Canadian Podcast Award in 2021, was a Queerty Award nominee, and was chosen as an Honoree at the 2020 Webby Awards. The show is available on all platforms. Andrew is also the creator of the viral hashtag #DisabledPeopleAreHot. You can find out more about Andrew by going to www.andrewgurza.com and connecting via social media @andrewgurza_.
Tune in as Andrew shares:
Dailyn Santana is a first-generation Cuban-American actress, keynote speaker, spoken word poet, and mental health advocate. Her work focuses on eradicating mental health stigma and her personal experience of living with bipolar 1 disorder, depression, and anxiety. Her mission is to be an example that those living with mental illness CAN live a happy, fulfilling life. She believes that living in your truth is the most powerful tool you can have, and performs her spoken word poetry at events and schools/universities across the country. Her work has been featured on or at The Dr. Oz Show, ALL DEF Poetry, Nuyorican Poets Cafe, Swaay Magazine, I and I Outfitters, We All Grow Latina, and Spiritú, and she has collaborated with Mitú, the BeVocal SpeakUp for Mental Health initiative, BeRemarkable Foundation, The Womens Empowerment Network, the American Foundation for Suicide Prevention, and the National Alliance for Mental Illness.
Tune in as Dailyn shares:
The podcast currently has 157 episodes available.
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