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Uninvisible Pod with Lauren Freedman

Lauren Freedman

4
Followers
19
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Uninvisible Pod with Lauren Freedman

Uninvisible Pod with Lauren Freedman

Lauren Freedman

4
Followers
19
Plays
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About Us

A podcast about invisible conditions and chronic invisible illness, featuring interviews with survivors, their loved ones, advocates, and experts in varied healing modalities, from medical to holistic. Hosted by Lauren Freedman, a voice actor, writer, and activist, who lives with Hashimoto’s disease and sleep disorders, Uninvisible uncovers real stories of survival and humanity – complete with laughter. In truth and with candor, we offer solutions – and challenge the world to change.

Latest Episodes

076: Ostomates Double Baggin’ It: Two Best Friends Without Buttholes!

Danielle Gulden and Joe Teeters are IBD warriors and permanent ileostomates. They’re comedians, speakers, advocates and Two Best Friends without Buttholes! Danielle has had ulcerative colitis (UC) for over 27 years. After going through nearly every IBD medication available, going to the bathroom 20-25 times per day, and having a toilet installed in her car (this is not a joke, folks!), she finally kicked her diseased colon to the curb in 2007.Her ostomy (and her stoma named Stella) saved her life and gave her back her life! Joe has also been living with Crohn’s disease for over 27 years. Like Danielle, he has run the gamut of medical treatments and medications. He has had a total of four intestinal surgeries, including two resections. In 2012, he underwent a total proctocolectomy with end ileostomy. That surgery landed him a spot alongside Danielle in the “Barbie Butt” Club! What’s that, you ask? Two cheeks, no hole, that butt is just for show! Danielle and Joe use their humor, wisdom, and stories to connect with and support other people living with ostomies and inflammatory bowel disease. They believe in the power of humor, advocacy and awareness! Tune in as Joe & Danielle share: that they were winners of “Hilarious Patient Leaders” at the WEGO Health Awards 2019 that Danielle changed majors because of her ill health, and wasn’t diagnosed with UC until she was 22 that getting a diagnosis was a relief, and gave Danielle a plan of action that Joe had appendicitis at 14, and believes this was the first flare of his Crohn’s disease that like Danielle, Joe wasn’t diagnosed until he was a young adult that Joe’s diagnosis took 1 year to ascertain, and Danielle’s took 6 years why Joe and Danielle both ended up with ileostomies all about Danielle’s car toilet what “Ostomy Bombing” is, and why they do it how they met that there are local support groups available through the Crohn’s & Colitis Foundation, as well as the United Ostomy Association their work speaking to legislators and creating policy change in favor of patients the importance of clinical trials to advance treatment options for IBD and other chronic illnesses Joe’s favorite ostomy cover — Carter’s newborn baby onesies

71 MIN1 d ago
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076: Ostomates Double Baggin’ It: Two Best Friends Without Buttholes!

075: Tina Aswani Omprakash, Own Your Crohn’s

ETW/CW: This episode features graphic description of rectovaginal surgery, as well as discussion of suicidal ideation. Tina Aswani Omprakash has been a Crohn’s patient for 14 years, and is the award-winning patient expert and advocate behind Own Your Crohn’s. Her aim is to normalize the rhetoric around chronic illnesses and disabilities in order to help patients own their ailments to live fuller, happier lives. Having endured multiple surgeries and overcome the stigma of her disease among family and friends, she is now pursuing a Master’s degree in Public Health at Mount Sinai’s Icahn School of Medicine. Tina is involved in IBD Social Circle and is on the Board of Advisors for the HealtheVoices 2020 advocacy conference. She also sits on the Board of Advisors for Health Advocacy Summit, the non-profit founded by former guest Sneha Dave. Tina was recently awarded the 2019 Healio Gastroenterology Disruptive Innovator Award in the Patient Voice category at the American College of Gastroenterology conference for moving the needle on GI care for patients. Via her platform of influence, she spearheads public health causes, including those proposing research for and creating awareness for inflammatory bowel disease (Crohn’s and ulcerative colitis), life-saving ostomy surgery, gastroparesis, fistulizing disease and initiatives supporting health concerns for women and racial, ethnic & sexual minorities. Tune in as Tina shares: that early on, she was additionally diagnosed with Lyme disease and Epstein-Barr Virus (EBV) that Crohn’s disease runs in her family, and was fatal for her father at the age of 39 (when she was 8) that at 21, she was diagnosed with mild ulcerative colitis — and neither given the diagnosis directly nor medicated proactive steps to take control of your health: requesting your medical records and labs, and seeking second opinions her first life-and-death experience: she developed C. diff after taking courses of antibiotics to treat contracted gastroenteritis — and had to leave work and move home the cultural stigma associated with IBD as a woman of South Asian descent that she had a 4-step J-pouch surgery after a temporary ostomy, but she developed chronic refractory pouchitis — and then went back to Wall Street that she developed her first rectovaginal fistula in 2011 — after one year of marriage how dehumanizing and desexualizing her experience has been that she has traveled to Cleveland Clinic and Mayo Clinic for treatment, and has had over 20 surgeries to-date that when trying biologics again to treat her condition, she went into anaphylactic shock — and then later, developed pyoderma gangrenosum, hidradenitis suppurativa, erythema nodosum, and Sweet’s syndrome that she spent 6 years with her J-pouch, and developed 4+ rectovaginal fistulas despite the use of biologics and follow-up surgeries that her J-pouch removal surgery was botched — by a doctor who had previously saved her life in 2008 — and as such, she was torn about pursuing a malpractice suit that follow-up surgery to correct the J-pouch issue revealed an abscess and open wound, which required more extensive long-term care her second life-and-death experience: at this stage, she was a ticking time bomb — considered septic, with a fistula growing toward her spine, and told to act fast to avoid potential paralysis that she ended up with a JP (Jackson Pratt) drain attached to her bottom and was told she’d need 3 more surgeries — and medical PTSD finally kicked in breaking point: when she became suicidal how her mom stepped up for her at her worst that she now lives with a permanent ostomy that she now has an additional diagnosis: gastroparesis (but was also diagnosed with IBS-C) that in early 2016, her Crohn’s disease went into remission how she’s navigated disagreements between different doctors on her medical team that her currently-advised diet consists largely of soup and smoothies that one of her doctors now believes she may never have had Cro

106 MIN1 w ago
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075: Tina Aswani Omprakash, Own Your Crohn’s

074: Sarah Ramey, Author of The Lady’s Handbook for Her Mysterious Illness

ESarah Ramey (also known by her musical pseudonym Wolf Larsen) is a writer and musician living in Washington, DC. She is a graduate of Bowdoin College, received an MFA in creative nonfiction writing from Columbia University in 2007, and worked on President Obama’s 2008 campaign. A recipient of the 2018 Whiting Creative Nonfiction Writing Grant, she is also the author of the new memoir The Lady’s Handbook For Her Mysterious Illness, a searingly funny and achingly candid retelling of her journey from misdiagnosis and disconnection from her body through 15 years of mysterious illness that she was consistently told was all in her head. And guess what? It wasn’t. The realization that women are so often brushed aside as hysterical, given false psychological diagnoses when their bodies are in crisis, and experiencing exacerbated symptoms because of their lack of acknowledgement led her down a rabbit hole in which she discovered her kin: WOMIs (Women with Mysterious Illness), who are “exhausted, gluten-free, and likely in possession of at least one autoimmune disease. [They are] allergic to…(everything), aching from tip to toe, digestively impaired, and on uneasy terms with [their] reproductive system[s]. [They are] addled, embarrassed, ashamed, and inflamed.” And almost all living with neuro-endocrine-immune issues. Now diagnosed with ME/CFS, as well as comorbid conditions CRPS (in her case, constant colovaginal pain), POTS, and MCS (multiple chemical sensitivity), she still lives with chronic symptoms and is on a mission to turn her experience into something from which we can learn and improve. A cautionary tale to both fellow WOMIs and the medical establishment, Sarah challenges us — all — to do better. Tune in as Sarah shares: that her main diagnosis is ME/CFS, and she experienced an abrupt onset during her senior year of college, in 2003 her first symptom: consistent UTIs that couldn’t be eradicated with antibiotics her first treatment: a urethral dilation gone wrong, which caused her to develop sepsis that these experiences were the beginning of years of pelvic pain that as tests began to come back negative, she was immediately referred to psychiatric counseling the disparity in funding between AIDS, cancer, and ME/CFS research a discussion of medical bias in research and practice that she got her CRPS diagnosis 10 years into her medical journey that her CRPS presented much like vulvodynia, but the Mayo Clinic finally gave her the correct diagnosis that her CRPS has been connected to a neuroma inside her vagina — and for the longest time, she could barely even sit down or wear pants that for years, she was denied tests because they would have required her to be under general anesthesia due to her pain — and these tests ultimately revealed the root cause of so much of that pain that she endured multiple medical traumas, from biopsies without anesthesia and incorrect device installment, to constant pain and disbelief the role of stress in chronic illness: and why so many chronic illnesses are modern problems that mistreating patients actively contributes to the worsening of disease how her relationship with her parents (who are both doctors) evolved over the course of her illness that she was early to research the microbiome and gut health, and was repudiated by friends, family, and doctors aspects of the feminine that influence medical bias that “pathological niceness” is a personal trait she has modified in order to better serve herself and others why the doctor-patient dynamic is one of imbalanced power how she practices mindfulness around her “spoons” that she’s recently gotten an ileostomy in order to manage her digestive symptoms the importance of functional medicine in her health journey and the future of medicine how she envisions the future of medicine and patient-hood

86 MIN2 w ago
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074: Sarah Ramey, Author of The Lady’s Handbook for Her Mysterious Illness

073: Pretty Couch Potato’s Lauren Reimer on Life w/ CIPO

Lauren Reimer is a blogger, content creator, and chronic illness community leader based in Fayetteville, Arkansas. At the age of 13, she was diagnosed with Chronic Intestinal Pseudo-Obstruction (CIPO), which means that her digestive tract acts as though it is obstructed — even when it is not. Lacking peristalsis, the worm-like movement that moves food, fluid, and air through her digestive tract, her body is unable to absorb adequate amounts of nutrients from eating alone. As such, she relies on IV nutrition (total parenteral nutrition, or TPN), administered from a 2.5-liter bag of fluid containing fats, protein, sugars, vitamins, and minerals that infuses over 12 hours while she sleeps. She’s been living on this therapy since her diagnosis, and while unusual, it has sustained her and allowed her to live a full life. She also has two feedings tubes that she uses to decompress her stomach and intestine during her waking hours. What sets Lauren apart in her work is her boldness and color: this woman loves all things vintage, fashion, music, and art, and when not in COVID quarantine she loves to spend time with her friends (and there are many!). A frequent guest on her social media feed is her sweet dog Elway, a rescue who keeps her spirits high and her body active (when he’s not napping). Friends of UP: meet Lauren of Pretty Couch Potato! Tune in as Lauren shares: how she was first diagnosed what CIPO is, and how it affects her body why she’s permanently on TPN — and how her understanding of nutrition has changed over time and with experience how her experiments with holistic medicine failed her that while she doesn’t live with chronic pain, she is in chronic discomfort that she now has both a G-tube and a J-tube to assist in her digestion, as well as a central line for absorbing her TPN just how rare CIPO is how she has become her own advocate how chronic illness has directly impacted her education and career prospects that she is now able to work part-time remotely, matching TPN patients with the best care for them why she loves her work, which overlaps with advocacy that there is a lot of misinformation out there about TPN that TPN is not often or readily prescribed (about 40k/year in the US are prescribed it) — and many individuals prescribed the treatment are given it short-term in the NICU or in hospice — very few people live long-term on TPN, like Lauren does that she may explore multiple-organ transplant options in the future what eating is like for her, given that she gets no nutrition from food the misunderstanding that people living with disabilities aren’t willing to fully participate in life — and how she actively works to challenge that misconception why her big-city vs. small-town healthcare experiences have been so vastly different

67 MIN3 w ago
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073: Pretty Couch Potato’s Lauren Reimer on Life w/ CIPO

072: PCOS Advocate & Model Lorna Alexis, Founder of Cystum of Curves

Lorna Alexis is the influencer, model, blogger, and creator of Cystum of Curves. An advocate living with PCOS (polycystic ovarian syndrome), the word “cystum” is derived from the word cyst, a characteristic of the syndrome. PCOS is known to cause weight gain and make that weight even harder to lose — so instead of letting PCOS get her down, Lorna decided to use her diagnosis as a platform for inspiration and motivation for others as she navigates the world … with curves. In this honest, revealing, and intimate episode, Lorna addresses that #bodypositivity life, how she contracted Type 2 diabetes as a direct result of living with PCOS, how she manages a healthy lifestyle, and why representation matters. Tune in as Lorna shares… what PCOS is: an endocrine disorder that begins in childbearing years and typically comes along with hormonal imbalance (usually excessive male hormone production), insulin resistance, hair loss/hirsutism, infrequent ovulation, irregular periods, blood clotting, and infertility/increased risk of miscarriage that PCOS is linked to many other conditions that some people living with PCOS develop cysts inside their ovaries — and the pain is similar to fibroid pain that she was diagnosed shortly after graduating college, while enduring menses that lasted for 120+ days that she wasn’t diagnosed right away, and also had to see several doctors before receiving the diagnosis that she started having symptoms as early as 12 years old that the doctor to diagnose her was Indian, and more familiar with PCOS than any of the American doctors she’d previously seen that the historical trope of the “bearded woman” was most likely a woman living with undiagnosed PCOS that most women living with PCOS need to be on low-carb diets in order to manage symptoms that she had to change her relationship to food what it’s like to live with fertility issues — and how she’s found strength in community and in being able to look toward other influencers and celebrities how she avoids sugar crashes and fatigue how routine supports her lifestyle and symptom management discrepancies and bias in research, funding, and awareness because PCOS is a women’s health issue that chronic illness changes the course of your life, and supportive mental healthcare is essential as you adjust to your new lifestyle and identity why it’s important to become your own advocate and prevent others from policing your body

62 MINAPR 29
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072: PCOS Advocate & Model Lorna Alexis, Founder of Cystum of Curves

071: Women’s Health w/ OB/GYN Jessica Shepherd, MD

Dr. Jessica Shepherd is an OB/GYN and women’s health expert, founder of Her Viewpoint (an online women’s health forum with a focus on addressing what she calls “below the belt” topics in a stigma-free setting), and the host of the new wellness podcast Breathe & Bloom. You may recognize her from her many TV appearances: as a frequent contributor on The Today Show, Dr. Oz, Steve Harvey, CBS News, and FOX News, among others. As an OB/GYN, she practices in Dallas and was previously at the University of Illinois at Chicago, where she served as Director of Minimally Invasive Gynecology. She also gives lectures on fibroids, myomectomies, and women’s health issues around the world. Her writing has been featured in numerous publications, including Women’s Day, Women’s Health, Self, Family Circle, Parents, Essence, and WebMD, and she is a national speaker for Poise, Allergan, and other brands promoting the discussion of women’s health issues. As a member of the board of the Women’s Health Foundation as well as the Multicultural Leadership Committee of the American Heart Association, she uses her expertise to help women understand their health conditions and how to address them appropriately. As we dig into in this interview, she understands all too well that women’s health issues are not discussed openly enough, and that these conversations need to expand for us to remove the stigma of sexual and reproductive health concerns. There is a connection between the physical, emotional, and spiritual that she strives to address in her practice and beyond. Tune in as Dr. Shepherd shares… about her COVID safety videos on social media how she realized she wanted to be a surgeon why endometriosis is an illness that she really cares about why women often feel shame or guilt around their reproductive health issues — and how she actively seeks to discuss them in the open the kinds of diagnoses she commonly sees, aside from endo: ovarian masses, fibroids, fibromyalgia, dispareunia (vaginismus, vulvar issues) her approach: to give women improved quality of life, with an understanding of integrative options and the body-mind connection that endometriosis diagnosis can take, on average, 6-10 years the nature of pain: that it is entirely subjective, but it is up to doctors to teach patients to express what the pain actually feels like so they can accurately diagnose and treat understanding the difference between pain that’s normal — and pain that isn’t that pelvic pain issues are publicly underrepresented understanding how specialists receive referrals, and how to ensure continuity in your care a discussion about the use of power morcellators in fibroid removal — and how minimally invasive surgeries have been adjusted since the blackbox warning from the FDA went into effect in 2015 why she keeps a sex therapist and a relationship therapist on call for her patients how the COVID pandemic is showing us the cracks in the US healthcare system why it’s worth asking doctors and specialists about their cash rate that while lifestyle management is important in overall health, it’s equally important that your choices be sustainable when women should begin getting regular Pap smears and other regular sexual health tests, and why they’re important

46 MINAPR 22
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071: Women’s Health w/ OB/GYN Jessica Shepherd, MD

070: Disabled Hikers’ Syren Nagakyrie

Syren Nagakyrie (she/they) is the founder of Disabled Hikers, a community and resource for those living with disabilities (and their loved ones) that enables and empowers them to access nature. An activist for accessibility and inclusion, they come from a working-class background and have struggled to retain adequate healthcare for most of their life. Syren lives with multiple invisible conditions, including hypermobile Ehlers-Danlos Syndrome (hEDS), dysautonomia (postural orthostatic tachycardia syndrome, or POTS), and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) — all of which cause them to live in chronic pain. They also live with clinical depression and complex PTSD. The Disabled Hiker’s Guide to Western Washington and Oregon: Outdoor Adventures Accessible by Car, Wheelchair, and Foot is being published by Falcon Guides in 2021. Tune in as Syren shares: that their illnesses are in various stages of diagnosis because of the state of healthcare here in the US that when they’ve been insured, they have usually been on a form of Medicaid, which has rarely been adequate (they’ve never been able to access private medical care) that they are only able to work part-time, and manages life on a limited income that their father was also disabled how they rose to the challenge of self-advocacy as an adult that a lot of adaptive gear is inaccessible because of its high price point that a lot of people learn about adaptive gear through disabled athletes — but we don’t all have to perform at that level that so many of us need more than a paved path and/or adaptive gear to make it into the great outdoors — and these accessibility needs should to be acknowledged how they have enacted direct change through the National Park Service what information could make the outdoors more accessible how they’d like to see healthcare in the US change why disability “inspiration porn” rubs them the wrong way how important it is to ask for help, especially when living with chronic illness

42 MINAPR 15
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070: Disabled Hikers’ Syren Nagakyrie

069: Sleep Disorders + ENT Know-How w/ Otolaryngologist Dr. Madan Kandula

Otolaryngologist Dr. Madan Kandula is considered Wisconsin’s thought leader for breathing and snoring/sleep apnea solutions. An expert in ear, nose, and throat medicine, his knowledge of healthy breathing has propelled him — alongside his wife, who is an audiologist — to found ADVENT, the largest independent ENT practice in Wisconsin, where they provide their patients with solution-based treatments without the uncertainty, dismissive attitude, and long waits that are often the norm. As such, he routinely treats patients who have had unsuccessful results from previous surgeries, and is often able to correct breathing issues with less invasive procedures. Along with his many other achievements, he is the first surgeon to perform balloon sinuplasty in Wisconsin, and the developer of a new model of care to evaluate The Breathing Triangle. Dr. Kandula is no stranger to these procedures, having undergone sinus surgery himself! In this episode, we dug deep into sleep apnea and related issues. Tune in as Dr. Kandula shares… what The Breathing Triangle is, and how it applies to his work that if you have obstructive sleep apnea, you have a throat issue — 100% of the time the main foci of his practice: sleep apnea, snoring, nasal blockage, and sinus issues that he encounters many patients who feel frustrated because the healthcare system hasn’t worked in their favor that the success rate in treating sleep apnea is generally only about 30% — but with the proper interventions, it can be treated properly that he commonly treats snoring and fatigue (usually caused by sleep disorders like apnea) his approach: more integrative and root-cause-related, rather than putting a Band-Aid on symptoms that there are too many people walking around in this world suffering needlessly — who ought not to be that sleep apnea doesn’t discriminate based on age: it can affect anyone, at any time that our airways are evolving to be narrower over time, which is causing more breathing issues during sleep (as well as a host of other complications) that our environment has changed over time, exposing us to new allergens how he envisions change in the medical system — with a shift to preventive care that could save time and money why doctors are experiencing burnout in the current healthcare system structure how his practice treats sleep apnea, and how the approach to treatment needs to change

65 MINAPR 8
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069: Sleep Disorders + ENT Know-How w/ Otolaryngologist Dr. Madan Kandula

068: The Sound of Sickle’s Chris Abdullahi

Chris Abdullahi is the founder of The Sound of Sickle, a non-profit organization that raises awareness of sickle cell diseases (SCD) and blood donations in the UK. He has spoken about sickle cell awareness on various platforms, including Google, Facebook, Guys and St. Thomas’ Hospital, and the BBC, and works closely with the NHS Blood Donations team to curate events and sign up new black blood donors. He also lives with hemoglobin SS disease, the most common and severe type of sickle cell — which means he inherited copies of the hemoglobin S gene from both of his parents. In this interview, he sat down with Lauren shortly after coming out of a ‘crisis’, which is the term used to describe the bouts of intense pain that those living with SCD can often experience. They discuss the importance of raising awareness of SCD outside the community, what living with SCD means to him, and how he manages his symptoms on a daily basis. Tune in as Chris shares… what SCD is that he was diagnosed with SCD when he was a toddler that while SCD is prevalent in Afro-Caribbean communities, there are also instances of it occurring in Hispanic & Asian communities, as well as rare cases in white communities that the biggest challenge in treating SCD is in getting blood donations how a crisis can manifest in SCD patients — that pain usually ensues when clots are present, caused by sickled blood cells what crisis triggers can look like that many SCD patients get regular blood transfusions as a preventive measure to avoid crisis that SCD is a lifelong chronic condition — patients cannot “grow out of it” that he didn’t meet many other SCD patients until he was in his 20s the mental health side of managing chronic illness like SCD the cultural side of managing chronic illness like SCD why he holds back from revealing his condition at work, and how he manages symptoms with his work schedule that sickle cell diseases have just been classified as a disability in the UK about his work in creating The Sound of Sickle that in the UK, black blood donors make up only 3% of the donation base why he won’t use stem cell treatments to cure his SCD why his friends are so important to his health his parting words: “Donate blood!”

67 MINAPR 1
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068: The Sound of Sickle’s Chris Abdullahi

067: Disability Attorney Andrew Kantor on Patient Advocacy & Playing To Win

Andrew Kantor is an Associate at Kantor & Kantor, LLP. The son of the founding namesake attorneys, his practice is focused primarily on helping individuals obtain wrongfully-denied disability and life insurance benefits in both ERISA and non-ERISA (bad faith) policies. A client-centered attorney, he has emerged as one of the US’s leading experts on fighting disability denials, with a particular focus on chronic-fatigue-related illnesses like ME/CFS and Lyme disease. Andrew serves on the Board of The Elder Law and Disability Rights Center, and he was named a 2019 Rising Star in Southern California by Super Lawyers. In this episode, he shares his passion for advocacy, the logic behind disability rulings, and how to read between the lines when communicating with insurance companies and physicians. Tune in as Andrew shares… how he began his legal career, and his focus on ME/CFS cases (and unidentified chronic fatigue cases) the wider range of illnesses he’s come across in his practice: MS (multiple sclerosis), Parkinson’s, EDS (Ehlers-Danlos Syndrome), TBI (traumatic brain injury), autoimmune disease (including lupus), mental health issues, and lots of back injuries that insurance companies are 20 years behind medical science, and won’t push themselves to the cutting edge until someone else pushes them to that so much of the outcome among disability cases comes down to the treating physicians information about CPET (cardiopulmonary exercise testing), which is an objective test used to prove the extent of disability, and often used in ME/CFS cases why the pain scale is totally subjective in legal defense that the CDC is behind on information with regard to ME/CFS — and that there’s nothing more harmful to individuals than when the government takes a bad position patients’ difficulty in acquiring needed drugs — particularly opioids for those in need that workers’ comp is creating more harm than good in CA — blocking inroads to proper medical care a discussion of gender disparity in believing women’s pain that he has yet to lose a disability case — and that most settle to avoid litigation how his firm makes their services affordable to those in need (i.e., no upfront fees) — and free consultations why it’s so critical you read your employer’s insurance policy in detail before signing off on it (paying special attention to mental health allowances)

59 MINMAR 25
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067: Disability Attorney Andrew Kantor on Patient Advocacy & Playing To Win

Latest Episodes

076: Ostomates Double Baggin’ It: Two Best Friends Without Buttholes!

Danielle Gulden and Joe Teeters are IBD warriors and permanent ileostomates. They’re comedians, speakers, advocates and Two Best Friends without Buttholes! Danielle has had ulcerative colitis (UC) for over 27 years. After going through nearly every IBD medication available, going to the bathroom 20-25 times per day, and having a toilet installed in her car (this is not a joke, folks!), she finally kicked her diseased colon to the curb in 2007.Her ostomy (and her stoma named Stella) saved her life and gave her back her life! Joe has also been living with Crohn’s disease for over 27 years. Like Danielle, he has run the gamut of medical treatments and medications. He has had a total of four intestinal surgeries, including two resections. In 2012, he underwent a total proctocolectomy with end ileostomy. That surgery landed him a spot alongside Danielle in the “Barbie Butt” Club! What’s that, you ask? Two cheeks, no hole, that butt is just for show! Danielle and Joe use their humor, wisdom, and stories to connect with and support other people living with ostomies and inflammatory bowel disease. They believe in the power of humor, advocacy and awareness! Tune in as Joe & Danielle share: that they were winners of “Hilarious Patient Leaders” at the WEGO Health Awards 2019 that Danielle changed majors because of her ill health, and wasn’t diagnosed with UC until she was 22 that getting a diagnosis was a relief, and gave Danielle a plan of action that Joe had appendicitis at 14, and believes this was the first flare of his Crohn’s disease that like Danielle, Joe wasn’t diagnosed until he was a young adult that Joe’s diagnosis took 1 year to ascertain, and Danielle’s took 6 years why Joe and Danielle both ended up with ileostomies all about Danielle’s car toilet what “Ostomy Bombing” is, and why they do it how they met that there are local support groups available through the Crohn’s & Colitis Foundation, as well as the United Ostomy Association their work speaking to legislators and creating policy change in favor of patients the importance of clinical trials to advance treatment options for IBD and other chronic illnesses Joe’s favorite ostomy cover — Carter’s newborn baby onesies

71 MIN1 d ago
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076: Ostomates Double Baggin’ It: Two Best Friends Without Buttholes!

075: Tina Aswani Omprakash, Own Your Crohn’s

ETW/CW: This episode features graphic description of rectovaginal surgery, as well as discussion of suicidal ideation. Tina Aswani Omprakash has been a Crohn’s patient for 14 years, and is the award-winning patient expert and advocate behind Own Your Crohn’s. Her aim is to normalize the rhetoric around chronic illnesses and disabilities in order to help patients own their ailments to live fuller, happier lives. Having endured multiple surgeries and overcome the stigma of her disease among family and friends, she is now pursuing a Master’s degree in Public Health at Mount Sinai’s Icahn School of Medicine. Tina is involved in IBD Social Circle and is on the Board of Advisors for the HealtheVoices 2020 advocacy conference. She also sits on the Board of Advisors for Health Advocacy Summit, the non-profit founded by former guest Sneha Dave. Tina was recently awarded the 2019 Healio Gastroenterology Disruptive Innovator Award in the Patient Voice category at the American College of Gastroenterology conference for moving the needle on GI care for patients. Via her platform of influence, she spearheads public health causes, including those proposing research for and creating awareness for inflammatory bowel disease (Crohn’s and ulcerative colitis), life-saving ostomy surgery, gastroparesis, fistulizing disease and initiatives supporting health concerns for women and racial, ethnic & sexual minorities. Tune in as Tina shares: that early on, she was additionally diagnosed with Lyme disease and Epstein-Barr Virus (EBV) that Crohn’s disease runs in her family, and was fatal for her father at the age of 39 (when she was 8) that at 21, she was diagnosed with mild ulcerative colitis — and neither given the diagnosis directly nor medicated proactive steps to take control of your health: requesting your medical records and labs, and seeking second opinions her first life-and-death experience: she developed C. diff after taking courses of antibiotics to treat contracted gastroenteritis — and had to leave work and move home the cultural stigma associated with IBD as a woman of South Asian descent that she had a 4-step J-pouch surgery after a temporary ostomy, but she developed chronic refractory pouchitis — and then went back to Wall Street that she developed her first rectovaginal fistula in 2011 — after one year of marriage how dehumanizing and desexualizing her experience has been that she has traveled to Cleveland Clinic and Mayo Clinic for treatment, and has had over 20 surgeries to-date that when trying biologics again to treat her condition, she went into anaphylactic shock — and then later, developed pyoderma gangrenosum, hidradenitis suppurativa, erythema nodosum, and Sweet’s syndrome that she spent 6 years with her J-pouch, and developed 4+ rectovaginal fistulas despite the use of biologics and follow-up surgeries that her J-pouch removal surgery was botched — by a doctor who had previously saved her life in 2008 — and as such, she was torn about pursuing a malpractice suit that follow-up surgery to correct the J-pouch issue revealed an abscess and open wound, which required more extensive long-term care her second life-and-death experience: at this stage, she was a ticking time bomb — considered septic, with a fistula growing toward her spine, and told to act fast to avoid potential paralysis that she ended up with a JP (Jackson Pratt) drain attached to her bottom and was told she’d need 3 more surgeries — and medical PTSD finally kicked in breaking point: when she became suicidal how her mom stepped up for her at her worst that she now lives with a permanent ostomy that she now has an additional diagnosis: gastroparesis (but was also diagnosed with IBS-C) that in early 2016, her Crohn’s disease went into remission how she’s navigated disagreements between different doctors on her medical team that her currently-advised diet consists largely of soup and smoothies that one of her doctors now believes she may never have had Cro

106 MIN1 w ago
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075: Tina Aswani Omprakash, Own Your Crohn’s

074: Sarah Ramey, Author of The Lady’s Handbook for Her Mysterious Illness

ESarah Ramey (also known by her musical pseudonym Wolf Larsen) is a writer and musician living in Washington, DC. She is a graduate of Bowdoin College, received an MFA in creative nonfiction writing from Columbia University in 2007, and worked on President Obama’s 2008 campaign. A recipient of the 2018 Whiting Creative Nonfiction Writing Grant, she is also the author of the new memoir The Lady’s Handbook For Her Mysterious Illness, a searingly funny and achingly candid retelling of her journey from misdiagnosis and disconnection from her body through 15 years of mysterious illness that she was consistently told was all in her head. And guess what? It wasn’t. The realization that women are so often brushed aside as hysterical, given false psychological diagnoses when their bodies are in crisis, and experiencing exacerbated symptoms because of their lack of acknowledgement led her down a rabbit hole in which she discovered her kin: WOMIs (Women with Mysterious Illness), who are “exhausted, gluten-free, and likely in possession of at least one autoimmune disease. [They are] allergic to…(everything), aching from tip to toe, digestively impaired, and on uneasy terms with [their] reproductive system[s]. [They are] addled, embarrassed, ashamed, and inflamed.” And almost all living with neuro-endocrine-immune issues. Now diagnosed with ME/CFS, as well as comorbid conditions CRPS (in her case, constant colovaginal pain), POTS, and MCS (multiple chemical sensitivity), she still lives with chronic symptoms and is on a mission to turn her experience into something from which we can learn and improve. A cautionary tale to both fellow WOMIs and the medical establishment, Sarah challenges us — all — to do better. Tune in as Sarah shares: that her main diagnosis is ME/CFS, and she experienced an abrupt onset during her senior year of college, in 2003 her first symptom: consistent UTIs that couldn’t be eradicated with antibiotics her first treatment: a urethral dilation gone wrong, which caused her to develop sepsis that these experiences were the beginning of years of pelvic pain that as tests began to come back negative, she was immediately referred to psychiatric counseling the disparity in funding between AIDS, cancer, and ME/CFS research a discussion of medical bias in research and practice that she got her CRPS diagnosis 10 years into her medical journey that her CRPS presented much like vulvodynia, but the Mayo Clinic finally gave her the correct diagnosis that her CRPS has been connected to a neuroma inside her vagina — and for the longest time, she could barely even sit down or wear pants that for years, she was denied tests because they would have required her to be under general anesthesia due to her pain — and these tests ultimately revealed the root cause of so much of that pain that she endured multiple medical traumas, from biopsies without anesthesia and incorrect device installment, to constant pain and disbelief the role of stress in chronic illness: and why so many chronic illnesses are modern problems that mistreating patients actively contributes to the worsening of disease how her relationship with her parents (who are both doctors) evolved over the course of her illness that she was early to research the microbiome and gut health, and was repudiated by friends, family, and doctors aspects of the feminine that influence medical bias that “pathological niceness” is a personal trait she has modified in order to better serve herself and others why the doctor-patient dynamic is one of imbalanced power how she practices mindfulness around her “spoons” that she’s recently gotten an ileostomy in order to manage her digestive symptoms the importance of functional medicine in her health journey and the future of medicine how she envisions the future of medicine and patient-hood

86 MIN2 w ago
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074: Sarah Ramey, Author of The Lady’s Handbook for Her Mysterious Illness

073: Pretty Couch Potato’s Lauren Reimer on Life w/ CIPO

Lauren Reimer is a blogger, content creator, and chronic illness community leader based in Fayetteville, Arkansas. At the age of 13, she was diagnosed with Chronic Intestinal Pseudo-Obstruction (CIPO), which means that her digestive tract acts as though it is obstructed — even when it is not. Lacking peristalsis, the worm-like movement that moves food, fluid, and air through her digestive tract, her body is unable to absorb adequate amounts of nutrients from eating alone. As such, she relies on IV nutrition (total parenteral nutrition, or TPN), administered from a 2.5-liter bag of fluid containing fats, protein, sugars, vitamins, and minerals that infuses over 12 hours while she sleeps. She’s been living on this therapy since her diagnosis, and while unusual, it has sustained her and allowed her to live a full life. She also has two feedings tubes that she uses to decompress her stomach and intestine during her waking hours. What sets Lauren apart in her work is her boldness and color: this woman loves all things vintage, fashion, music, and art, and when not in COVID quarantine she loves to spend time with her friends (and there are many!). A frequent guest on her social media feed is her sweet dog Elway, a rescue who keeps her spirits high and her body active (when he’s not napping). Friends of UP: meet Lauren of Pretty Couch Potato! Tune in as Lauren shares: how she was first diagnosed what CIPO is, and how it affects her body why she’s permanently on TPN — and how her understanding of nutrition has changed over time and with experience how her experiments with holistic medicine failed her that while she doesn’t live with chronic pain, she is in chronic discomfort that she now has both a G-tube and a J-tube to assist in her digestion, as well as a central line for absorbing her TPN just how rare CIPO is how she has become her own advocate how chronic illness has directly impacted her education and career prospects that she is now able to work part-time remotely, matching TPN patients with the best care for them why she loves her work, which overlaps with advocacy that there is a lot of misinformation out there about TPN that TPN is not often or readily prescribed (about 40k/year in the US are prescribed it) — and many individuals prescribed the treatment are given it short-term in the NICU or in hospice — very few people live long-term on TPN, like Lauren does that she may explore multiple-organ transplant options in the future what eating is like for her, given that she gets no nutrition from food the misunderstanding that people living with disabilities aren’t willing to fully participate in life — and how she actively works to challenge that misconception why her big-city vs. small-town healthcare experiences have been so vastly different

67 MIN3 w ago
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073: Pretty Couch Potato’s Lauren Reimer on Life w/ CIPO

072: PCOS Advocate & Model Lorna Alexis, Founder of Cystum of Curves

Lorna Alexis is the influencer, model, blogger, and creator of Cystum of Curves. An advocate living with PCOS (polycystic ovarian syndrome), the word “cystum” is derived from the word cyst, a characteristic of the syndrome. PCOS is known to cause weight gain and make that weight even harder to lose — so instead of letting PCOS get her down, Lorna decided to use her diagnosis as a platform for inspiration and motivation for others as she navigates the world … with curves. In this honest, revealing, and intimate episode, Lorna addresses that #bodypositivity life, how she contracted Type 2 diabetes as a direct result of living with PCOS, how she manages a healthy lifestyle, and why representation matters. Tune in as Lorna shares… what PCOS is: an endocrine disorder that begins in childbearing years and typically comes along with hormonal imbalance (usually excessive male hormone production), insulin resistance, hair loss/hirsutism, infrequent ovulation, irregular periods, blood clotting, and infertility/increased risk of miscarriage that PCOS is linked to many other conditions that some people living with PCOS develop cysts inside their ovaries — and the pain is similar to fibroid pain that she was diagnosed shortly after graduating college, while enduring menses that lasted for 120+ days that she wasn’t diagnosed right away, and also had to see several doctors before receiving the diagnosis that she started having symptoms as early as 12 years old that the doctor to diagnose her was Indian, and more familiar with PCOS than any of the American doctors she’d previously seen that the historical trope of the “bearded woman” was most likely a woman living with undiagnosed PCOS that most women living with PCOS need to be on low-carb diets in order to manage symptoms that she had to change her relationship to food what it’s like to live with fertility issues — and how she’s found strength in community and in being able to look toward other influencers and celebrities how she avoids sugar crashes and fatigue how routine supports her lifestyle and symptom management discrepancies and bias in research, funding, and awareness because PCOS is a women’s health issue that chronic illness changes the course of your life, and supportive mental healthcare is essential as you adjust to your new lifestyle and identity why it’s important to become your own advocate and prevent others from policing your body

62 MINAPR 29
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072: PCOS Advocate & Model Lorna Alexis, Founder of Cystum of Curves

071: Women’s Health w/ OB/GYN Jessica Shepherd, MD

Dr. Jessica Shepherd is an OB/GYN and women’s health expert, founder of Her Viewpoint (an online women’s health forum with a focus on addressing what she calls “below the belt” topics in a stigma-free setting), and the host of the new wellness podcast Breathe & Bloom. You may recognize her from her many TV appearances: as a frequent contributor on The Today Show, Dr. Oz, Steve Harvey, CBS News, and FOX News, among others. As an OB/GYN, she practices in Dallas and was previously at the University of Illinois at Chicago, where she served as Director of Minimally Invasive Gynecology. She also gives lectures on fibroids, myomectomies, and women’s health issues around the world. Her writing has been featured in numerous publications, including Women’s Day, Women’s Health, Self, Family Circle, Parents, Essence, and WebMD, and she is a national speaker for Poise, Allergan, and other brands promoting the discussion of women’s health issues. As a member of the board of the Women’s Health Foundation as well as the Multicultural Leadership Committee of the American Heart Association, she uses her expertise to help women understand their health conditions and how to address them appropriately. As we dig into in this interview, she understands all too well that women’s health issues are not discussed openly enough, and that these conversations need to expand for us to remove the stigma of sexual and reproductive health concerns. There is a connection between the physical, emotional, and spiritual that she strives to address in her practice and beyond. Tune in as Dr. Shepherd shares… about her COVID safety videos on social media how she realized she wanted to be a surgeon why endometriosis is an illness that she really cares about why women often feel shame or guilt around their reproductive health issues — and how she actively seeks to discuss them in the open the kinds of diagnoses she commonly sees, aside from endo: ovarian masses, fibroids, fibromyalgia, dispareunia (vaginismus, vulvar issues) her approach: to give women improved quality of life, with an understanding of integrative options and the body-mind connection that endometriosis diagnosis can take, on average, 6-10 years the nature of pain: that it is entirely subjective, but it is up to doctors to teach patients to express what the pain actually feels like so they can accurately diagnose and treat understanding the difference between pain that’s normal — and pain that isn’t that pelvic pain issues are publicly underrepresented understanding how specialists receive referrals, and how to ensure continuity in your care a discussion about the use of power morcellators in fibroid removal — and how minimally invasive surgeries have been adjusted since the blackbox warning from the FDA went into effect in 2015 why she keeps a sex therapist and a relationship therapist on call for her patients how the COVID pandemic is showing us the cracks in the US healthcare system why it’s worth asking doctors and specialists about their cash rate that while lifestyle management is important in overall health, it’s equally important that your choices be sustainable when women should begin getting regular Pap smears and other regular sexual health tests, and why they’re important

46 MINAPR 22
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071: Women’s Health w/ OB/GYN Jessica Shepherd, MD

070: Disabled Hikers’ Syren Nagakyrie

Syren Nagakyrie (she/they) is the founder of Disabled Hikers, a community and resource for those living with disabilities (and their loved ones) that enables and empowers them to access nature. An activist for accessibility and inclusion, they come from a working-class background and have struggled to retain adequate healthcare for most of their life. Syren lives with multiple invisible conditions, including hypermobile Ehlers-Danlos Syndrome (hEDS), dysautonomia (postural orthostatic tachycardia syndrome, or POTS), and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) — all of which cause them to live in chronic pain. They also live with clinical depression and complex PTSD. The Disabled Hiker’s Guide to Western Washington and Oregon: Outdoor Adventures Accessible by Car, Wheelchair, and Foot is being published by Falcon Guides in 2021. Tune in as Syren shares: that their illnesses are in various stages of diagnosis because of the state of healthcare here in the US that when they’ve been insured, they have usually been on a form of Medicaid, which has rarely been adequate (they’ve never been able to access private medical care) that they are only able to work part-time, and manages life on a limited income that their father was also disabled how they rose to the challenge of self-advocacy as an adult that a lot of adaptive gear is inaccessible because of its high price point that a lot of people learn about adaptive gear through disabled athletes — but we don’t all have to perform at that level that so many of us need more than a paved path and/or adaptive gear to make it into the great outdoors — and these accessibility needs should to be acknowledged how they have enacted direct change through the National Park Service what information could make the outdoors more accessible how they’d like to see healthcare in the US change why disability “inspiration porn” rubs them the wrong way how important it is to ask for help, especially when living with chronic illness

42 MINAPR 15
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070: Disabled Hikers’ Syren Nagakyrie

069: Sleep Disorders + ENT Know-How w/ Otolaryngologist Dr. Madan Kandula

Otolaryngologist Dr. Madan Kandula is considered Wisconsin’s thought leader for breathing and snoring/sleep apnea solutions. An expert in ear, nose, and throat medicine, his knowledge of healthy breathing has propelled him — alongside his wife, who is an audiologist — to found ADVENT, the largest independent ENT practice in Wisconsin, where they provide their patients with solution-based treatments without the uncertainty, dismissive attitude, and long waits that are often the norm. As such, he routinely treats patients who have had unsuccessful results from previous surgeries, and is often able to correct breathing issues with less invasive procedures. Along with his many other achievements, he is the first surgeon to perform balloon sinuplasty in Wisconsin, and the developer of a new model of care to evaluate The Breathing Triangle. Dr. Kandula is no stranger to these procedures, having undergone sinus surgery himself! In this episode, we dug deep into sleep apnea and related issues. Tune in as Dr. Kandula shares… what The Breathing Triangle is, and how it applies to his work that if you have obstructive sleep apnea, you have a throat issue — 100% of the time the main foci of his practice: sleep apnea, snoring, nasal blockage, and sinus issues that he encounters many patients who feel frustrated because the healthcare system hasn’t worked in their favor that the success rate in treating sleep apnea is generally only about 30% — but with the proper interventions, it can be treated properly that he commonly treats snoring and fatigue (usually caused by sleep disorders like apnea) his approach: more integrative and root-cause-related, rather than putting a Band-Aid on symptoms that there are too many people walking around in this world suffering needlessly — who ought not to be that sleep apnea doesn’t discriminate based on age: it can affect anyone, at any time that our airways are evolving to be narrower over time, which is causing more breathing issues during sleep (as well as a host of other complications) that our environment has changed over time, exposing us to new allergens how he envisions change in the medical system — with a shift to preventive care that could save time and money why doctors are experiencing burnout in the current healthcare system structure how his practice treats sleep apnea, and how the approach to treatment needs to change

65 MINAPR 8
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069: Sleep Disorders + ENT Know-How w/ Otolaryngologist Dr. Madan Kandula

068: The Sound of Sickle’s Chris Abdullahi

Chris Abdullahi is the founder of The Sound of Sickle, a non-profit organization that raises awareness of sickle cell diseases (SCD) and blood donations in the UK. He has spoken about sickle cell awareness on various platforms, including Google, Facebook, Guys and St. Thomas’ Hospital, and the BBC, and works closely with the NHS Blood Donations team to curate events and sign up new black blood donors. He also lives with hemoglobin SS disease, the most common and severe type of sickle cell — which means he inherited copies of the hemoglobin S gene from both of his parents. In this interview, he sat down with Lauren shortly after coming out of a ‘crisis’, which is the term used to describe the bouts of intense pain that those living with SCD can often experience. They discuss the importance of raising awareness of SCD outside the community, what living with SCD means to him, and how he manages his symptoms on a daily basis. Tune in as Chris shares… what SCD is that he was diagnosed with SCD when he was a toddler that while SCD is prevalent in Afro-Caribbean communities, there are also instances of it occurring in Hispanic & Asian communities, as well as rare cases in white communities that the biggest challenge in treating SCD is in getting blood donations how a crisis can manifest in SCD patients — that pain usually ensues when clots are present, caused by sickled blood cells what crisis triggers can look like that many SCD patients get regular blood transfusions as a preventive measure to avoid crisis that SCD is a lifelong chronic condition — patients cannot “grow out of it” that he didn’t meet many other SCD patients until he was in his 20s the mental health side of managing chronic illness like SCD the cultural side of managing chronic illness like SCD why he holds back from revealing his condition at work, and how he manages symptoms with his work schedule that sickle cell diseases have just been classified as a disability in the UK about his work in creating The Sound of Sickle that in the UK, black blood donors make up only 3% of the donation base why he won’t use stem cell treatments to cure his SCD why his friends are so important to his health his parting words: “Donate blood!”

67 MINAPR 1
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068: The Sound of Sickle’s Chris Abdullahi

067: Disability Attorney Andrew Kantor on Patient Advocacy & Playing To Win

Andrew Kantor is an Associate at Kantor & Kantor, LLP. The son of the founding namesake attorneys, his practice is focused primarily on helping individuals obtain wrongfully-denied disability and life insurance benefits in both ERISA and non-ERISA (bad faith) policies. A client-centered attorney, he has emerged as one of the US’s leading experts on fighting disability denials, with a particular focus on chronic-fatigue-related illnesses like ME/CFS and Lyme disease. Andrew serves on the Board of The Elder Law and Disability Rights Center, and he was named a 2019 Rising Star in Southern California by Super Lawyers. In this episode, he shares his passion for advocacy, the logic behind disability rulings, and how to read between the lines when communicating with insurance companies and physicians. Tune in as Andrew shares… how he began his legal career, and his focus on ME/CFS cases (and unidentified chronic fatigue cases) the wider range of illnesses he’s come across in his practice: MS (multiple sclerosis), Parkinson’s, EDS (Ehlers-Danlos Syndrome), TBI (traumatic brain injury), autoimmune disease (including lupus), mental health issues, and lots of back injuries that insurance companies are 20 years behind medical science, and won’t push themselves to the cutting edge until someone else pushes them to that so much of the outcome among disability cases comes down to the treating physicians information about CPET (cardiopulmonary exercise testing), which is an objective test used to prove the extent of disability, and often used in ME/CFS cases why the pain scale is totally subjective in legal defense that the CDC is behind on information with regard to ME/CFS — and that there’s nothing more harmful to individuals than when the government takes a bad position patients’ difficulty in acquiring needed drugs — particularly opioids for those in need that workers’ comp is creating more harm than good in CA — blocking inroads to proper medical care a discussion of gender disparity in believing women’s pain that he has yet to lose a disability case — and that most settle to avoid litigation how his firm makes their services affordable to those in need (i.e., no upfront fees) — and free consultations why it’s so critical you read your employer’s insurance policy in detail before signing off on it (paying special attention to mental health allowances)

59 MINMAR 25
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067: Disability Attorney Andrew Kantor on Patient Advocacy & Playing To Win
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