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This is Not What I Ordered: a podcast on full-hearted living with chronic illness + health challenges
105 minutes | 7 months ago
69: Season Three Finale
Welcome to the Season 3 Finale! In a year filled with COVID-19, a racial justice movement, wildfires, an election, and now the death of Ruth Bader Ginsburg, this has seemed like so much more than just one year. At this very important moment in time, I am so thankful that we have been able to stay connected through these episodes all along the way. For today’s finale, we will revisit each episode over the past year, and listen to some key moments from each and my thoughts about them, as well as some updates and messages from many of our guests. I’ll also offer my thanks to all who are involved in producing the podcast, introduce you to some of these talented people, and draw the episode to a close with my ‘State of the Podcast’ address. This season brought us so many heart-centered moments, and just as many pearls of wisdom from our guests, and I am just delighted to share them once again. Thank you all once more for being a part of this remarkable community – as you will hear repeatedly today, it has come to play a large and valued role in the lives of so many, especially my own.
72 minutes | 8 months ago
68: Apart Together with Monica Michelle + Courtney Brame
Podcasting has brought so much to my life, both as someone who loves hearing others’ stories and as someone who wants to learn from the experiences of others. Hearing an array of experiences is what makes This is Not What I Ordered so powerful to me, and to listeners, as well. Today’s episode touches a bit on how podcasting is a form of therapy — both for the hosts, the guests, and the listeners. It also combines conversations about podcasting, chronic illness, and life in quarantine with two past guests: Monica Michelle and Courtney Brame. This conversation is full of fun banter and deep, powerful conversations. What I appreciate most about this conversation is that Monica and Courtney don’t shy away from sharing their own experiences during the pandemic, as well as prior to the pandemic. It’s so important to see how we all experience life through the lenses of our chronic conditions, as well as through our human lenses. I hope you find this conversation as refreshing and insightful as I did.
53 minutes | 9 months ago
67: Race + What We Don't Say, Pt. 2
Today’s episode marks the second part of my conversation with relational therapist, social justice educator, intuitive narrative coach, and social justice consultant for the podcast, Celia Hilson, which we started in Episode 66. As we find ourselves in the midst of a racial justice movement and a pandemic, this special conversation about race is as enlightening as it is necessary. We begin this week’s episode by talking about the nutrients of intergenerational legacy, Celia’s experiences with White women, and my understanding of internalized dominance. Celia shares her hopes for the current focus upon race, injustice, and equality, and we explore how the killing of George Floyd reignites so many past traumas. We conclude our conversation by looking at the complex layers of the construction of race, class, and division, the interplay of oppression, defensiveness, privilege and healing, and the concepts of conscious relationship and undefended loving. World events have rendered this time in history as one ripe for deep analysis of what was once status quo, but can never be so again. In the relational space Celia and I created in this conversation, I am grateful for the openness we were able to share about these profoundly important issues, taking the time to peel back layers of complexity. As you listen in today, I sincerely hope that you will gain greater empathy and understanding, and that you will find the insights shared as valuable and thought provoking as we have.
37 minutes | 9 months ago
66: Race + What We Don't Say
This week I'm sitting with Celia Hilson, who's returned to the podcast after joining me on Season 2 (Episode 28). Celia is a relational therapist, social justice educator, and intuitive narrative coach fostering cross-cultural understanding. She helps clients to heal through remembering and reclaiming lost parts of identities. Celia has joined me over the past few months not only as my friend, but as someone who I recently hired as a social justice consultant for the podcast. As you know, we've been in the midst of a racial justice movement, and in the midst of a pandemic, all that the same time. It's been a really challenging, powerful period for our world. During this time, Celia and I recorded a special conversation talking about race. We created a two-part series of episodes, and this is part one of that conversation. In this week's episode, Celia and I explore the origins of our relationship as friends and social justice educators, and how our racial identities impact how we relate to one another and to the world. Celia shares about her evolving relationship with ancestral, intergenerational trauma and what liberation looks like. She also shares her perspectives on worthiness and building cross-cultural relationships of trust. I hope you enjoy this conversation as we explore some of the themes that are necessary to address in our cultural evolution towards racial justice.
5 minutes | a year ago
65: Grieving, Acknowledging + Taking Action
54 minutes | a year ago
64: Enjoying the Non-Sense with Sherry Espinosa + Melissa Platt
We’ve had couples on the podcast, we’ve had reunions, we’ve had “quarantine chats.” This week, I’m bringing you a friendship “roundtable” with the lovely Sherry Espinoza and Melissa Platt. You may recognize those names because they’ve both been on the podcast before — but not like this. This episode is a lighthearted and sweet chat amongst friends. Sherry and Melissa, who met in the Shine Your Light Mastermind, have become fast friends, and I loved digging into their connection during our chat. We talked about our symptoms, shelter-in-place, cacti, and cats, as well as the mythology of our symptoms. Their friendship is beautiful, but so are their insights on navigating health challenges, quarantine, and life in general. This conversation left me with a “full cup,” and I hope it fills yours, too.
63 minutes | a year ago
63: No One Else I'd Rather Be With with Erynn + Leo Newman
In this week’s episode of This is Not What I Ordered, I’m taking you along for a little reunion. I recently caught up with Erynn & Leo Newman, who are “frequent flyers” here on the podcast. Leo, who was a guest way back in Episode 11, and his wife Erynn, were the first couple interviewed for the podcast in Episode 32. Married for over 14 years, they’ve weathered their fair share of challenges. I recently checked in on them to see how they’re navigating this new challenge (the current pandemic). In this reunion episode, we talk about Leo’s chronic health struggles and how they’re managing COVID-19 shutdowns as a family. As always, Leo and Erynn share their vulnerability and strength, and their love for one another. We discuss pre-COVID memories, grocery shopping and protective measures they are taking to protect Leo, and their seven-year-old son Hudson even joins us for the end of the episode. This conversation reaffirmed for me that we are all in this together, and that you can still make connections with friends even from a distance.
60 minutes | a year ago
62: Chronic Quarantine Life with Latasha Doyle + Lily Sloane
Today’s episode is a bit different than most of the ones you’ll hear on This is Not What I Ordered. Instead of an interview with a single guest or couple, I was able to connect with Lily Sloane and Latasha Doyle, two of the people on our podcast team. In light of everything going on in the world, and with heightened anxiety and worry for many in the chronic illness community, we decided to discuss how we’re navigating this uncharted territory. While grief, anger, and concern over our own health and safety were all discussed, we also talked about the beauty that has come from self-isolation. Each of us shares a bit of our struggles, as well as what we’re really thankful for in times like this. We also talk about how these events are elevating our experiences with our bodies, and calling us to really turn to the tools we’ve already built up to take care of ourselves. I know that many of you are trying to process the effects of this pandemic in your own life, and I hope this conversation shows you that you’re definitely not alone in this community.
65 minutes | a year ago
61: It's OK If You're Not OK with Kristina Sarkisova
Coming to terms with chronic illness is something we’re all trying to do. Kristina Sarkisova is on the podcast this week talking about her journey to acceptance, and what the process has looked (and felt) like. Her diagnosis of Lyme disease was a long time coming, and even now she’s not entirely sure it’s the perfect fit for her specific symptoms and situation. But it’s enough for her. So many of us can relate to the need for a diagnosis — just to have something explained. Unfortunately, many of us don’t have that. So how can you be “OK” with the unknowns? Kristina speaks about navigating that uncertainty, as well as what it feels like to grieve the changes that take place in your life. She also spoke about the struggle between identifying as a person with disabilities and a musician, when she hasn’t been able to practice her musical talents recently. There’s a push and pull there we can all relate to — who we were and what we wanted for ourselves before and what we do now. This is a great conversation about how health challenges impact our identities, and how we can learn to love ourselves in any situation.
63 minutes | a year ago
60: You Are Enough with Ijmal Haider
This was such a special conversation with Ijmal Haider (of “Hidden Spoons” and the “Help Us” YouTube channel). Having lived with Ulcerative Colitis for several years and spearheading many events, projects, and organizations geared towards supporting people with chronic illness, he is the definition of an awesome patient advocate. Together, we chatted about some of his challenging moments that have led to the illumination of what’s truly important to him: honesty, medical care that gives him access to a better quality of life, communicating well with his body, and connecting with others living with chronic illness. These days, he’s all about lifting up the people who have helped him along the way by sharing their stories, and being a support to other folks with health challenges.
44 minutes | a year ago
59: Giving Yourself Grace with Dr. Monica Blied
On today’s episode, I’m joined by Dr. Monica Ellis-Blied, a licensed psychologist, health coach, and chair yoga instructor living in California. In 2012, Monica was diagnosed with lupus. Over the last eight years, she has come to terms with the idea that the word “healthy” is not a one-size-fits-all term. She also reminds us that it’s OK to throw pity parties (complete with balloons and German Chocolate Cake, when the occasion calls for it). The way she speaks about her diagnosis, her work, and her family are a true testament to her giving nature, and her willingness to face down the challenges that come with having her condition. You’ll notice, in this episode, that Monica has a way about her that is both refreshing and inspiring. She sees her chronic illness diagnosis as a blessing, one that has helped her slow down, to find joy in the little things, and pay attention to what truly matters. I think her insights are something we all need to hear.
55 minutes | a year ago
58: Courageous Mourning with Melinda Laus
Melinda Laus has always felt “different.” From her earliest memories, she struggled with asthma, allergies, and feeling like her body just worked differently than other bodies did. After working throughout childhood and adolescence to get her asthma and allergies under control, she thought she had her body somewhat “figured out.” When she experienced the tragic loss of her husband when she was 32, however, Melinda’s body went into a tailspin. It took about 2 years after her husband’s death for her to be diagnosed with hypothyroidism and adrenal exhaustion. Since then, she’s been on a path to embracing her grief, exploring the power of rest, and accepting the ebbs and flows in her energy. In our heartfelt conversation, Melinda and I cover grief, trauma, change, isolation, and the permission to feel deeply. Melinda shares some incredible insights with me, including how she navigated the “grief within grief” after her husband’s death and her diagnosis — from grieving family lasagna dinners to accepting that her home might look like a train wreck on any given Tuesday night. This is a moving discussion where we talk about the gifts that come from grief, and how we can all hold joy and pain in equal measure to create a truly fulfilling life.
79 minutes | a year ago
57: Solitude + Connection with Andy McLellan
In this episode, I’m joined by Andy McLellan, a haiku poet and trainee Zen priest living in Canterbury, UK. Nearly 25 years ago, when Andy was in the midst of obtaining his PhD, he began experiencing symptoms he assumed were associated with stress. Shortly after graduating, however, he came down with glandular fever and collapsed, never fully recovering. Over the next 20 years, Andy would receive a diagnosis of myalgic encephalomyelitis (ME) and navigate an entirely new learning curve: how to organize his life in a way that would allow him to balance his chronic illness and start a family. Despite knowing the signs and symptoms and understanding that he would need to slow down and take care of himself, he suffered a major crash 5 years ago which has caused him to be largely confined to his bed. However, that doesn’t stop Andy from finding joy in the simple things: squirrels right outside his bedroom door, knitting, writing beautiful haiku poetry. It’s evident throughout our chat that Andy has not allowed his chronic illness to alter his positivity. If anything, it has buoyed it. I felt a powerful connection to Andy, and we were both reminded just how impactful it can be to sit with people who just get it. As individuals navigating our chronic illnesses, we can connect with each other and not have to over-explain, or judge. We just take these illnesses for what they are and support one another fully. This conversation with Andy proved a testament to resilience. He is truly an inspiration to me, and I hope to all of you.
48 minutes | a year ago
56: Living With Visible Illness with Lashana Taylor
Dealing with an invisible health challenge can be beyond frustrating. But what happens when a traditionally invisible illness becomes manifest? And how do we cope with the visual symptoms of our conditions? That’s what I’m talking to Lashana Taylor about on this episode of This is Not What I Ordered. Diagnosed November 2018 with primary progressive multiple sclerosis, Lashana finally had an answer to her declining health. With the diagnosis came relief, but it also threw into light some of her own challenges: with how she saw herself and how she allowed others to show up for her. During this interview, I talk to Lashana about how much she’s grown over the last year, how she’s treating her MS, and the milestones and lessons she’s gained along the way. We also get really honest about how health challenges of all shapes and sizes affect our inner and outer worlds, essentially by holding up a mirror to ourselves and others. My favorite guidance from Lashana during our chat? Vulnerability isn’t weakness. Patience is required. And sometimes, you have to be challenged to bring out the best in yourself. I really enjoyed this heartfelt conversation with Lashana about relationships, medications and treatments, and growing as a person in ways you might never expect before a health challenge.
48 minutes | a year ago
55: Sitting with the Unknown with Michelle Horton
In this episode, I’m joined by Michelle Horton, a close friend and fellow therapist. In the middle of finishing grad school and planning a wedding, Michelle went in for a routine blood test, which showed an abnormally high platelet count. After this finding, a whirlwind of tests and doctors determined that she had essential thrombocytosis and endometriosis. She was 23. After that, Michelle had to learn how to stand in the uncertainty that her new diagnoses brought with them. Could she have a regular life? Could she have children? Ten years later, Michelle is working as a licensed therapist and is a mother to her 19-month-old son. There have been definite struggles over the last decade, she shares, but she’s learned a thing or two along the way (some of which she shares with us in this episode). She has an inner light that her health challenges haven’t diminished and, if anything, have only made stronger. During our chat, Michelle walked me through some of the tools she’s used over the last decade to support herself and overcome the uncertainty — tools I think all of us can use. Michelle and I connected most over the idea of “not knowing,” over the questions and challenges we both face. Despite our different conditions, our experiences have linked us together in a way that I’m excited to share with all of you. I also hope you’ll be as inspired by Michelle as I am.
53 minutes | a year ago
54: Better Than a Cookie-Cutter Life [Couple's Edition] with Latasha + Shane Doyle
On this week’s episode, I’m bringing back the Couple’s Edition of This is Not What I Ordered to share an intimate and insightful discussion with Shane and Latasha Doyle. Latasha (who you may remember from Episode 53) and her husband Shane joined me in my own living room to talk about their life together. As many of you know, Latasha is the shownotes and transcription writer for the podcast. And as you’ve found out from her previous episode, she also lives with Marfan syndrome, a connective tissue disorder. This condition affects her daily life in ways that also affect her marriage with Shane. Because of the nature of her condition, Shane and Latasha have to be open about death, illness, and what they really want from life… which isn’t always easy. I’m so thankful to have been witness to their connection, and to be able to share the conversations they have with each other. This conversation offers such beautiful insight into the relationships we all have as we live with our own health challenges, and about the hard conversations we sometimes must have with ourselves and others. I hope that you take as much away from it as I did.
66 minutes | a year ago
53: Building Your Grace Muscle with Latasha Doyle
This week on This is Not What I Ordered, I am so excited to share my recent chat with a very special guest: Latasha Doyle. Latasha owns her own copy and content writing agency, but she’s also the resident show notes writer here on the NWIO Team. She has Marfan syndrome, a connective tissue disorder, and opens up about her experience living with this condition her whole life. Latasha brings her humor and her honesty to the table, and talks candidly about echocardiograms, being “out” with her condition, and how she’s learned to embrace her quirks (read: a passion for productivity tools and schedulers) to help her balance health, work, and life. This was such a fun conversation, and Latasha’s advice about interrupting social narratives really spoke to me. As a community of people living with health challenges, we internalize so much about what it means to be “healthy” or “normal,” and Latasha shared her process for working through it. She also shared how her chosen family — her husband and her friends — are constantly showing her what it means to show up and truly love someone. I am so excited to share this interview with all of you, and for you to hear Latasha’s love for life and the deep, deep respect she holds for the condition that many people would consider a burden.
68 minutes | a year ago
52: You Don't Have to Apologize with Natalie Enright
In this episode, I am so excited to share my chat with Natalie Enright, an Adult Services Librarian living in San Francisco. Natalie, who has multiple sclerosis, was first diagnosed in 2010. She attributes her early diagnosis to her husband. After seeing a decline in Natalie’s health, he encouraged her to go to the doctor without making her feel scared or overwhelmed, for which she is so thankful. Since her initial diagnosis, Natalie has not only worked to figure out how to manage and navigate her disease, but to also find the humor in the not-so-pleasant changes that come with MS. During our talk, Natalie discussed how her attitude plays a large role in how she gets through some of the tougher times with this condition. Two of her passions, meditation and physical activity, have also helped her to stay upbeat and focused on her goals; one of which was to graduate and start her career as a librarian. Now, as a professional librarian, her excitement for her career is palpable, and I have so much admiration for her love for her work. I was so honored to hear Natalie’s story (and humor) during our chat, and I know that so much of what she shared can benefit many in this community. I hope you’ll tune in to hear the full episode!
51 minutes | a year ago
51: Enjoying the Dive with Mike Bajrami
This week, I’m talking to Mike Bajrami, a tech and audio agency owner living in the Los Angeles area. During our discussion, he shares his unique perspective on pain, serving others, and embracing interests. His health journey starts back in 2003, when he received a lower back injury while playing basketball. His lumbar area injury would eventually morph into a spine disc injury, damage to multiple vertebrae, a shifted pelvis, and debilitating pain. He has also dealt with leaky gut, food allergies, skin reactions, and more, all stemming from his initial injury. But for Mike, one of the most difficult elements of this injury was the mental challenges he would face. Following his injury, Mike faced a deep depression, a “darkness,” as he put it. For three years, Mike struggled with both his injury and the effects it had on his spirit. As happens to many of us in this community, this period brought more than pain: it also brought Mike to his true passions. Working first as a freelance audio producer and then eventually within his own tech and media agency, which he and his partners have built from the ground up, Mike has been able to create a life that finally feels fulfilling. Mike is a beautiful example of the power that allowing ourselves time and patience to heal can have on our lives (and spirits), and I’m excited to share our chat with you!
50 minutes | 2 years ago
50: Hearing Loss + Listening Inward with Melissa Platt
In this episode, I’m joined by Melissa Platt as she shares the story of how her challenges with hearing loss taught her to truly listen. Melissa is a clinical psychologist and therapist who specializes in helping people heal through complex trauma so they can thrive, and has been living with progressively deteriorating hearing loss since 2010. Her health journey has taken her through many different shifts over the years, including the realization that the track she was on was no longer making her happy. Melissa decided to make a change and pursue her joy, leaving her job as a researcher to open a private practice where she has more space for the reflection and introspection she was craving. As Melissa was going through these major shifts in her hearing loss journey, she started listening to the NWIO podcast and found a community and message she could really resonate with. I had the pleasure of connecting with Melissa through the Shine Your Light mastermind earlier this year, where she tapped into this community and found a place she belonged — a place where she could think creatively and be genuinely curious about her hearing loss. During our talk, Melissa shares how healing it can be to gather strength from media that you resonate with, whether that’s a podcast, guided meditations, books, or online videos. She also gives us a rundown of the polyvagal theory and how it allows her to connect with and gain inspiration from those around her. In this episode, we dive into just how complicated it can be to hold the desire to look at your health challenges in a positive light while also needing to feel the hard feelings that come with chronic illness. Melissa’s story is a study in how our health challenges can be a gift while also highlighting the relief in knowing it’s okay if we’re not ready to see our challenges in that light. In this episode, we talk about how Melissa has been working to integrate both sides of the conversation, as well as how different bodily responses can serve as indicators of resonance. By paying attention to our inner voice and the way our bodies respond, we can start accessing emotions that are harder to get to when we’re on the wrong track. She reminds us that our inner navigation system is always talking to us, and you don’t need perfect hearing to listen.
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