Bendy Bodies with Dr. Linda Bluestein

What if some of the most disabling symptoms in EDS, HSD, POTS, MCAS, ME/CFS, and long COVID are being driven by something we still struggle to see on standard testing?

In this episode of Bendy Bodies, Dr. Linda Bluestein is joined by guest co-host Dr. Ina Stephens, Associate Director of the UVA Health EDS and Hypermobility Disorder Center, along with Brain Inflammation Collaborative co-founder Christy Jagdfeld and neuroscientist Dr. Megan Fitzgerald. Together, they explore the rapidly evolving science of brain inflammation, including what it actually means, how it differs from conditions like encephalitis or brain edema, and why it may matter in complex multisystem illness.

The conversation dives into microglial activation, mast cell involvement in the central nervous system, and the challenge of detecting subtle neuroinflammation in living patients. The guests also discuss emerging research tools, including ultra-high-field MRI, PET ligands, and blood-based extracellular vesicles, that may eventually give clinicians a clearer window into what is happening inside the brain.

The group also takes a closer look at the Brain Inflammation Collaborative's Unhide platform, which is collecting real-world, patient-reported data across more than 30 overlapping chronic conditions, including EDS, POTS, MCAS, ME/CFS, and long COVID. Early findings raise important questions about quality of life, symptom burden, the limitations of the Beighton score, and why pediatric research may be especially important.

The episode closes with practical implications, including why pacing matters when exercise can worsen symptoms rather than improve them, and what patients and clinicians should watch as this field moves forward.

Takeaways

“Brain inflammation” can involve subtle processes such as microglial activation and mast cell signaling that may not appear on routine MRI or CT scans.

Emerging tools such as ultra-high-field MRI, PET imaging, and blood-based extracellular vesicles may eventually help researchers detect and track neuroinflammation in living patients.

The Unhide platform has collected real-world data from thousands of participants with overlapping chronic conditions, offering a new way to study symptom burden and quality of life outside traditional clinical trials.

The Beighton score may not reflect functional severity or symptom burden, highlighting the need for better ways to assess hypermobility over time.

Pediatric research is urgently needed to understand how these conditions develop and whether earlier recognition could change long-term outcomes.

Want more of the Brain Inflammation Collaborative?

https://www.unhidenow.org/
https://www.braininflammation.org/

Want to learn more about the UVA EDS Center?

For Appointments and Questions: RUVAEDSCenter@uvahealth.org
UVA EDS: https://www.uvahealth.com/healthy-practice/advancing-care-through-ehlers-danlos-clinic
UVA EDS FAQ: https://www.uvahealth.com/support/eds/faq

UVA Pediatric Integrative Medicine: https://childrens.uvahealth.com/specialties/integrative-health

Want more Dr. Linda Bluestein, MD?
Website: https://www.hypermobilitymd.com/
YouTube: https://www.youtube.com/@bendybodiespodcast
Instagram: ⁠⁠⁠⁠https://www.instagram.com/hypermobilitymd/⁠⁠⁠⁠
Facebook: ⁠⁠⁠⁠https://www.facebook.com/BendyBodiesPodcast⁠⁠⁠⁠
X: ⁠⁠⁠⁠https://twitter.com/BluesteinLinda⁠⁠⁠⁠
LinkedIn: ⁠⁠⁠⁠https://www.linkedin.com/in/hypermobilitymd/⁠⁠⁠⁠
Newsletter: ⁠⁠⁠⁠https://hypermobilitymd.substack.com/
Shop my Amazon store ⁠⁠⁠ https://www.amazon.com/shop/hypermobilitymd
Dr. Bluestein's Recommended Herbs, Supplements and Care Necessities: https://us.fullscript.com/welcome/hypermobilitymd/store-start

Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them.

Join YOUR Bendy Bodies community at ⁠⁠https://www\.bendybodiespodcast\.com/⁠⁠.

YOUR bendy body is our highest priority!⁠⁠

Learn more about Human Content at ⁠⁠⁠http://www\.human-content\.com⁠⁠⁠

Podcast Advertising/Business Inquiries: ⁠⁠⁠sales@human-content.com⁠⁠⁠

Part of the Human Content Podcast Network

Go to AirDoctorPro.com and use promo code BENDY_ to get UP TO $300 off today!

FTC: This video is not sponsored. Links are commissionable, meaning I may earn commission from purchases made through links

Chapters:
00:00 Beighton Score Debate00:28 Meet the Guests02:54 Why BIC Was Founded07:22 Defining Brain Inflammation09:44 Biomarkers and Imaging Advances18:12 Unhide Platform and Real World Data25:55 Comorbidities and Survey Cadence31:40 Survey Fatigue Solutions32:49 Tools Beyond Beighton34:16 Research Priorities Wish List35:41 Biomarkers EVs Immune Profiling38:37 Pediatric Focus Early Signs46:34 Building Pediatric Platform53:07 Hacks Resources And Wrap Up
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What if being “naturally flexible” is actually the thing putting you at risk for injury?

Dr. Linda Bluestein welcomes back Dr. Emily Scherb, known as The Circus Doc, for a fascinating conversation about what circus performers can teach all hypermobile people about flexibility, strength, joint control, and injury prevention.

A physical therapist, researcher, and former circus performer, Dr. Scherb explains why being able to get into an extreme position is not the same as being able to control it—and why impressive range of motion can sometimes mask weakness, instability, or poor load tolerance.

The conversation explores how hypermobile bodies function differently at end range, why building strength in the mid-range can be so important, and how to tell the difference between normal training soreness, overtraining, injury, and signs that may point toward an underlying connective tissue disorder.

Dr. Scherb and Dr. Bluestein also dig into the psychology of pushing through pain, the way flexibility can become intertwined with identity, the spinal changes documented in contortionists, and why performers may hide injuries when they fear that speaking up could threaten their careers.

And while circus provides an extreme example, the lessons apply far beyond the circus world—to dancers, athletes, yogis, gymnasts, and anyone with a body that moves farther than average.

Takeaways:

More range is not always better. Hypermobility describes how far a joint can move; what matters just as much is how well you can control that range.

Getting into a position is not the same as owning it. Extreme flexibility without adequate strength and control can increase stress on joints and surrounding tissues.

Hypermobile people often benefit from building strength and motor control in mid-range before progressively challenging end range.

Persistent pain, recurrent injuries, instability, or symptoms that seem disproportionate to training may be clues that something more than routine soreness is going on.

Contortion offers a striking example of how repeated end-range loading can produce measurable adaptations in the spine.

Pain should not have to become severe before someone feels “allowed” to seek care. Creating a culture where performers can address problems early may help protect both health and longevity.

The goal for a hypermobile body is not necessarily less flexibility. It is more strength, control, and capacity within the range you already have.

Want more of Dr. Emily Scherb?

Instagram: https://www.instagram.com/thecircusdoc

Website: https://www.thecircusdoc.com

Want more Dr. Linda Bluestein, MD?
Website: https://www.hypermobilitymd.com/
YouTube: https://www.youtube.com/@bendybodiespodcast
Instagram: ⁠⁠⁠⁠https://www.instagram.com/hypermobilitymd/⁠⁠⁠⁠
Facebook: ⁠⁠⁠⁠https://www.facebook.com/BendyBodiesPodcast⁠⁠⁠⁠
X: ⁠⁠⁠⁠https://twitter.com/BluesteinLinda⁠⁠⁠⁠
LinkedIn: ⁠⁠⁠⁠https://www.linkedin.com/in/hypermobilitymd/⁠⁠⁠⁠
Newsletter: ⁠⁠⁠⁠https://hypermobilitymd.substack.com/
Shop my Amazon store ⁠⁠⁠ https://www.amazon.com/shop/hypermobilitymd
Dr. Bluestein's Recommended Herbs, Supplements and Care Necessities: https://us.fullscript.com/welcome/hypermobilitymd/store-start

Want to learn more about the UVA EDS Center?

For Appointments and Questions: RUVAEDSCenter@uvahealth.org
UVA EDS: https://www.uvahealth.com/healthy-practice/advancing-care-through-ehlers-danlos-clinic
UVA EDS FAQ: https://www.uvahealth.com/support/eds/faq

UVA Pediatric Integrative Medicine: https://childrens.uvahealth.com/specialties/integrative-health

Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them.

Join YOUR Bendy Bodies community at ⁠⁠https://www\.bendybodiespodcast\.com/⁠⁠.

YOUR bendy body is our highest priority!⁠⁠

Learn more about Human Content at ⁠⁠⁠http://www\.human-content\.com⁠⁠⁠

Podcast Advertising/Business Inquiries: ⁠⁠⁠sales@human-content.com⁠⁠⁠

Part of the Human Content Podcast Network

Head to http://www.cozyearth.com and use my code BENDY for an exclusive 20% off.

Go to AirDoctorPro.com and use promo code BENDY_ to get UP TO $300 off today!

FTC: This video is not sponsored. Links are commissionable, meaning I may earn commission from purchases made through links

Chapters:
00:00 Painful Past With Stretching
00:40 Meet The Circus Doc
03:03 How Emily Found Circus Medicine
04:37 What Circus Really Is
06:25 Circus Injuries And End Range
08:55 Hypermobility Flexibility Resilience
33:00 Soreness Vs Overtraining Red Flags
37:52 Hypermobility Soreness Clues
40:13 Yellow Flags vs Red Flags
42:46 Circus Risk and Resilience
47:27 Ignoring Pain Signals
52:08 Building Safer Culture
59:46 Contortion Safety and Strength
01:05:46 Longevity Hacks and Wrap Up

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Tongue tie and POTS? EDS without obvious hypermobility? Perimenopause making symptoms worse? And tongue numbness after a nerve block? In this listener Q&A, Dr. Linda Bluestein, the Hypermobility MD, and recurring co-host Dr. Dacre Knight, medical director of the UVA Health EDS and Hypermobility Disorders Center, tackle some of the complicated questions patients are asking—and where the evidence is still evolving.

Can tongue tie contribute to dysautonomia? Can men have a connective tissue disorder even without obvious joint hypermobility? How should people with hEDS, POTS, and MCAS think about pregnancy? And could being born prematurely influence autonomic function later in life?

Dr. Bluestein and Dr. Knight also explore emerging research examining trauma histories in people with EDS and HSD, including how repeated medical dismissal and gaslighting may contribute to trauma over time.

The conversation turns to perimenopause and menopause, including why perimenopause can be particularly challenging and the sometimes-competing considerations of estrogen and progesterone therapy for people managing both menopausal symptoms and connective tissue laxity.

Finally, they break down Local Anesthetic Systemic Toxicity (LAST): what it is, symptoms to recognize, potential risk factors, and how it is managed—prompted by a listener’s experience with recurrent tongue numbness following nerve blocks.

In this episode, you’ll learn:

What we know—and don’t know—about tongue tie and dysautonomia

Why connective tissue disorders may look different in men

Important considerations when planning pregnancy with hEDS, POTS, and MCAS

Whether prematurity may influence autonomic function later in life

What emerging research suggests about trauma, EDS/HSD, and medical gaslighting

Why perimenopause may be particularly difficult for some hypermobile patients

How estrogen and progesterone may affect symptoms and connective tissue laxity

How to recognize Local Anesthetic Systemic Toxicity (LAST)

Why unusual neurologic symptoms after local anesthetic exposure deserve attention

Go to AirDoctorPro.com and use promo code BENDY_ to get UP TO $300 off today!

Want more Dr. Linda Bluestein, MD?

Website: ⁠https://www.hypermobilitymd.com/⁠YouTube: ⁠https://www.youtube.com/@bendybodiespodcast

⁠Instagram: ⁠⁠⁠⁠⁠https://www.instagram.com/hypermobilitymd/

⁠⁠⁠⁠⁠Facebook: ⁠⁠⁠⁠⁠https://www.facebook.com/BendyBodiesPodcast⁠⁠⁠⁠⁠X: ⁠⁠⁠⁠⁠https://twitter.com/BluesteinLinda⁠⁠⁠⁠⁠

LinkedIn: ⁠⁠⁠⁠⁠https://www.linkedin.com/in/hypermobilitymd/

⁠⁠⁠⁠⁠Newsletter: ⁠⁠⁠⁠⁠https://hypermobilitymd.substack.com/

⁠Shop my Amazon store ⁠⁠⁠ ⁠https://www.amazon.com/shop/hypermobilitymd

⁠Dr. Bluestein's Recommended Herbs, Supplements and Care Necessities: ⁠https://us.fullscript.com/welcome/hypermobilitymd/store-start⁠

Want to learn more about the UVA EDS Center?

For Appointments and Questions: ⁠RUVAEDSCenter@uvahealth.org

⁠UVA EDS: ⁠https://www.uvahealth.com/healthy-practice/advancing-care-through-ehlers-danlos-clinic⁠UVA EDS

FAQ: ⁠https://www.uvahealth.com/support/eds/faq⁠

UVA Pediatric Integrative Medicine: ⁠https://childrens.uvahealth.com/specialties/integrative-health⁠

Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them.

YOUR bendy body is our highest priority!⁠⁠⁠⁠

Learn more about Human Content at ⁠⁠⁠⁠http://www\.human-content\.com⁠⁠⁠⁠

Podcast Advertising/Business Inquiries: ⁠⁠⁠⁠sales@human-content.com⁠⁠⁠⁠

Part of the Human Content Podcast Network

FTC: This video is not sponsored. Links are commissionable, meaning I may earn commission from purchases made through links Join YOUR Bendy Bodies community at ⁠⁠⁠https://www\.bendybodiespodcast\.com/⁠⁠⁠.

Chapters:
00:00 Medical Trauma Opens00:36 Show Intro and Fan Qs02:38 Adult Tongue Tie Talk12:09 hEDS in Men Question16:58 10 Percent Rule Toolkit21:36 Pregnancy Planning Advice28:02 Prematurity and Trauma Links33:46 Trauma Begets Trauma34:52 Stellate Blocks And Vagal Stimulation36:20 Postmenopausal Bleeding And MCAS38:36 Endometriosis And Perimenopause42:19 Hormones Versus Hypermobility45:49 Clinician Advocacy And Learning49:57 LAST And Tongue Numbness

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Could lumping every type of Ehlers-Danlos syndrome under one umbrella actually be doing more harm than good?

In this thought-provoking episode, host Dr. Linda Bluestein, the Hypermobility MD, is joined by Abbey Phillipson, who was born with COL5A1 classical Ehlers-Danlos syndrome, survived the first recorded non-traumatic pediatric spondyloptosis, and now serves as Head Strength Coach for Paralympic and Adaptive Sports at the University of Michigan and founder of the Collagen Advocacy Network.

Inspired by Abbey's powerful presentation at the UVA Research Symposium, this conversation challenges long-held assumptions about how we define, discuss, and advocate for Ehlers-Danlos syndrome. Although hypermobile EDS has dramatically increased public awareness, Abbey argues that people living with rare and ultra-rare EDS types, representing just 1 to 3 percent of the community, are too often overlooked in research, funding, clinical care, and even public conversations.

Together, Dr. Bluestein and Abbey explore whether the different EDS types should continue to share a single name, why distinguishing hypermobile EDS from the genetically defined types could ultimately benefit everyone, and how naming disorders by their underlying gene and predominant manifestation might improve diagnosis, research, and patient care.

Abbey also shares deeply personal stories that illustrate what's at stake, including a friend who spent 35 years carrying the wrong diagnosis before genetic testing revealed kyphoscoliotic EDS. Their conversation highlights why genetic counseling matters, the limitations of direct-to-consumer testing, and how assumptions in medicine can unintentionally delay appropriate care.

The episode closes on a message of hope and empowerment. After her neurosurgeon prescribed strength training, Abbey transformed from experiencing monthly full-joint dislocations to having none. Today, she helps athletes and people of all abilities discover that movement can be adapted, strength can be built, and disability does not define potential. She also shares why advocacy is most effective when it channels frustration into meaningful, solution-focused action, plus one of her favorite protein-packed hypermobility hacks.

Takeaways:

People with rare and ultra-rare EDS types make up only about 1 to 3 percent of the community and are frequently left out of decisions about research, funding, and care.

Clearly distinguishing hypermobile EDS from the genetically defined types benefits everyone; naming a condition by its gene and predominant manifestation could improve medical clarity and care.

The "invisible illness" framing can cause genuinely visible rare types to be overlooked, and comfort with a clinical diagnosis can lead to decades-long misdiagnoses that genetic testing would catch.

Genetic testing and counseling are essential, especially before starting a family; direct-to-consumer testing carries real limitations and should be interpreted cautiously.

Strength training can be transformative: after her neurosurgeon prescribed it, Abbey went from frequent full dislocations to none, and movement can be tailored to activities people love rather than being purely prescriptive.

Go to AirDoctorPro.com and use promo code BENDY_ to get UP TO $300 off today!

Want more Abbey Phillipson?

Instagram: @abbeyphillipson @definedbycollagen

Website: collagenadvocacynetwork.org

Want more Dr. Linda Bluestein, MD?Website: https://www.hypermobilitymd.com/YouTube: https://www.youtube.com/@bendybodiespodcastInstagram: ⁠⁠⁠⁠https://www.instagram.com/hypermobilitymd/⁠⁠⁠⁠Facebook: ⁠⁠⁠⁠https://www.facebook.com/BendyBodiesPodcast⁠⁠⁠⁠X: ⁠⁠⁠⁠https://twitter.com/BluesteinLinda⁠⁠⁠⁠LinkedIn: ⁠⁠⁠⁠https://www.linkedin.com/in/hypermobilitymd/⁠⁠⁠⁠Newsletter: ⁠⁠⁠⁠https://hypermobilitymd.substack.com/Shop my Amazon store ⁠⁠⁠ https://www.amazon.com/shop/hypermobilitymdDr. Bluestein's Recommended Herbs, Supplements and Care Necessities: https://us.fullscript.com/welcome/hypermobilitymd/store-start

Want to learn more about the UVA EDS Center?

For Appointments and Questions: RUVAEDSCenter@uvahealth.orgUVA EDS: https://www.uvahealth.com/healthy-practice/advancing-care-through-ehlers-danlos-clinicUVA EDS FAQ: https://www.uvahealth.com/support/eds/faq

UVA Pediatric Integrative Medicine: https://childrens.uvahealth.com/specialties/integrative-health

Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them.

YOUR bendy body is our highest priority!⁠⁠

Learn more about Human Content at ⁠⁠⁠http://www\.human-content\.com⁠⁠⁠

Podcast Advertising/Business Inquiries: ⁠⁠⁠sales@human-content.com⁠⁠⁠

Part of the Human Content Podcast Network

FTC: This video is not sponsored. Links are commissionable, meaning I may earn commission from purchases made through links

Join YOUR Bendy Bodies community at ⁠⁠https://www\.bendybodiespodcast\.com/⁠⁠.

Learn more about your ad choices. Visit megaphone.fm/adchoices

Are surgical risks in EDS exaggerated, underestimated, or simply misunderstood? And how can patients tell the difference between a promising treatment and an expensive procedure being marketed ahead of the evidence?

In this listener Q&A episode, host Dr. Linda Bluestein, the Hypermobility MD, is joined by recurring co-host Dr. Dacre Knight, Medical Director of the UVA Health EDS and Hypermobility Disorders Center, to tackle some of the most difficult questions submitted by the Bendy Bodies community.

They begin with a candid discussion about surgery in EDS: why most patients do well, which complications are genuinely more likely, and why a surgeon’s technical experience and procedural volume may matter just as much as their understanding of EDS (Ehlers-Danlos Syndromes) and HSD (Hypermobility Spectrum Disorders). They also explain how poorly controlled mast cell activation can derail recovery and why preparation before surgery may be more important than simply being reassured that everything will be fine.

The conversation then turns to the striking mental health burden within the EDS and hypermobility population, including self-harm and cutting behaviors. Dr. Bluestein and Dr. Knight discuss why anxiety, depression, insomnia, and pain may sometimes reflect shared underlying biological drivers, and how treatments such as low dose naltrexone (LDN) may improve multiple symptoms at once when used thoughtfully.

Listener questions lead them into the increasingly controversial world of cervical instability treatment, including PRP, the PICL procedure, and cervical fusion. What evidence actually exists? Who may benefit? What are the risks? And could treating mast cell activation and other contributors first reduce symptoms enough to avoid an invasive procedure altogether?

They also take a critical look at IV infusion therapy, explaining when infusions may be medically appropriate, when they may cause more harm than benefit, and why clinics offering the same expensive infusion to nearly every patient before reviewing labs should immediately raise concern.

The episode closes with an honest assessment of what is currently known about the cause of hypermobile EDS (hEDS), whether epigenetics may play a role, and why patients should pause whenever a clinician recommends a highly prescriptive treatment before completing a proper diagnostic evaluation.

Takeaways:

EDS surgery risks are real, but fear-based messaging can be harmful too. Most patients do well, especially when they choose an experienced, high-volume surgeon and address factors such as mast cell activation syndrome (MCAS) before the procedure.

A kind surgeon is not necessarily a skilled surgeon. Bedside manner matters, but technical expertise, procedural volume, complication rates, and careful postoperative planning may matter even more.

Mental health symptoms in EDS should not automatically be dismissed as “just anxiety.” Pain, poor sleep, mast cell activation, autonomic dysfunction, inflammation, and other biological drivers can profoundly affect emotional health and may need to be treated alongside psychological support.

One treatment can sometimes improve far more than one symptom. When appropriately prescribed, low dose naltrexone (LDN) may improve pain, sleep, mood, anxiety, GI symptoms, and overall function by addressing shared underlying mechanisms.

PRP and the PICL procedure are promising options for carefully selected patients, particularly given the significant risks and irreversible nature of cervical fusion. While early experience is encouraging, we still need higher-quality studies to better define who benefits most, what the long-term outcomes are, and how these procedures compare with other treatment options.

Go http://www.AquaTru.com now for 20% off (your purifier) using promo code BENDY.

Want to learn more about the UVA EDS Center?

For Appointments and Questions: RUVAEDSCenter@uvahealth.org

UVA EDS: https://www.uvahealth.com/healthy-practice/advancing-care-through-ehlers-danlos-clinic

UVA EDS FAQ: https://www.uvahealth.com/support/eds/faq

UVA Pediatric Integrative Medicine: https://childrens.uvahealth.com/specialties/integrative-health

Want more Dr. Linda Bluestein, MD?

Website: https://www.hypermobilitymd.com/

YouTube: https://www.youtube.com/@bendybodiespodcast

Instagram: ⁠⁠⁠⁠https://www.instagram.com/hypermobilitymd/⁠⁠⁠⁠

Facebook: ⁠⁠⁠⁠https://www.facebook.com/BendyBodiesPodcast⁠⁠⁠⁠

X: ⁠⁠⁠⁠https://twitter.com/BluesteinLinda⁠⁠⁠⁠

LinkedIn: ⁠⁠⁠⁠https://www.linkedin.com/in/hypermobilitymd/⁠⁠⁠⁠

Newsletter: ⁠⁠⁠⁠https://hypermobilitymd.substack.com/

Shop my Amazon store ⁠⁠⁠ https://www.amazon.com/shop/hypermobilitymd

Dr. Bluestein's Recommended Herbs, Supplements and Care Necessities: https://us.fullscript.com/welcome/hypermobilitymd/store-start

Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them.

Join YOUR Bendy Bodies community at ⁠⁠https://www\.bendybodiespodcast\.com/⁠⁠.

YOUR bendy body is our highest priority!⁠⁠

Learn more about Human Content at ⁠⁠⁠http://www\.human-content\.com⁠⁠⁠

Podcast Advertising/Business Inquiries: ⁠⁠⁠sales@human-content.com⁠⁠⁠

Part of the Human Content Podcast Network

FTC: This video is not sponsored. Links are commissionable, meaning I may earn commission from purchases made through links
Learn more about your ad choices. Visit megaphone.fm/adchoices