This is Not What I Ordered: a podcast on full-hearted living with chronic illness + health challenges

Welcome to a bonus episode of This is Not What I Ordered! I'm so excited to announce a special upcoming event. It's called the Abundant Living Conference for therapists with chronic illness and health challenges. We will hear presentations from clinicians Celia Hilson, Amanda Pratt, Andrea Barbour, Becky Robbins, Julie Novas, Michelle Horton, Onyx Fujii, Hayley Quinn, and Emily Whitish. They'll present topics that range from yoga and self care practices to resilience and preventing burnout. Bonus activities include a therapist social, a healing sound bath, and a special pre-conference tea tasting event. We've curated a very soothing weekend for you, and we can't wait to learn and grow together.  You can register for the Abundant Living Conference at abundantlivingconference.com, or by visiting the podcast website. It's going to be a lovely weekend, and we hope to see you there.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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!

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!

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.

In this episode, I’m joined by Sherry Espinosa for an insightful and full-hearted discussion about how she got more comfortable with her health challenges and started letting faith guide her journey. I met Sherry through the Shine Your Light mastermind I hosted earlier this year, where she conquered her fears and stepped back into the world to build authentic relationships with others. Over the course of her health journey, she’s undergone a major shift from searching for all of the answers to realizing that the answers were inside of her the entire time — all she had to do was stop fighting and learn to love her own heart.Living with Multiple Sclerosis and low vision, Sherry bravely opens up about the ups and downs of her winding health journey. She’s had to process multiple rare diagnoses from an early age, eventually losing most of her sight after years of medication and surgeries. During the process, she learned that by denying the pain and anger she was feeling, she was also denying a part of herself. When she realized she didn’t need to understand everything, she handed the reins over to faith and started giving herself permission to feel. Whether it’s pain, sadness, or anger, she shares a powerful message we all need to hear: Your feelings aren’t going to kill you. Sherry embodies pure love as she urges us to be gentle with ourselves and really listen to what our bodies and spirit are telling us. She is a shining example of the positive transformation that can happen when we welcome the fatigue, pain, and emotions that come with chronic illness. Our chat was a breath of fresh air and a reminder that the real healing begins when we stop being so hard on ourselves. During our chat, Sherry and I dig into our shared MS diagnosis, as well as the deep impacts her health journey has had on how she views herself. For Sherry, living with multiple health challenges has allowed her to be more authentic and shown her she has the inner strength to handle anything.

For this episode of Not What I Ordered, I’m joined by my amazing music editor and close friend, Lily Sloane. Lily is a therapist, composer, audio producer, and host of a weekly advice show with a deep passion for making the world a better place through self-healing. Learning to live with and accept her health challenges through therapy has helped her find comfort in the unknown, which she then channels into her own practice. By tearing down the notion of “perfect health”, Lily is able to help her clients -- and herself -- open the door to gratitude.Lily shows true vulnerability as she opens up about the shame and dogma attached to chronic illness, as well as how she learned to live with her illness without needing to know what it is. She also shares how therapy has taught her to accept where she is on her health journey instead of where she’d like to be -- or where anyone else expects her to be! By transforming her perspective, Lily was able to change her inner narrative, shed her need to fix everything, and learn to sit with her discomfort. Her story is a much-needed reminder that it’s okay to not have all the answers. Throughout her journey, she has learned that in order to make a change in the world around us, we must first make a change within ourselves. My open-heart discussion with Lily is full of powerful insights on making more space for acceptance and how embracing the unknown can lead to a more empowered life. I hope you enjoy our talk as much as I did!

In this episode of This Is Not What I Ordered, I’m joined by Sheryl Chan — a web developer, writer, and travel enthusiast living with multiple chronic illnesses. Suffering from a mild stroke at the age of 14, Sheryl was diagnosed with a rare blood clotting syndrome that set off a chain reaction of other autoimmune disorders including lupus, epilepsy, Sjögren’s syndrome, and a heart rhythm disorder. In the midst of her health challenges, Sheryl embraced her love of writing and started using blogs as a cathartic outlet. This eventually led to the creation of A Chronic Voice, where she’s able to raise awareness of silent disabilities and give other people with chronic illness a space to share their perspectives.By accepting her health challenges and freely sharing them with the world, Sheryl has taken the power away from her illness and reclaimed it as her own. She reminds us that acceptance doesn’t mean you’re giving up — it can be a powerful opportunity for transformation and inner growth.During our time together, Sheryl offers up her thoughts on why it’s so important to normalize chronic illness and gain different perspectives. She also opens up about the identity struggles that accompany chronic illness, how it taught her to respect her body, and how having a sense of wonder about the body has helped her cope.

In this episode, I’m joined by accomplished singer-songwriter and chronic pain survivor Stefan Alexander Weiner. Stefan lives with central sensitization syndrome, a confusing and painful condition that left him without answers and unable to perform for years. Since his diagnosis, Stefan has bravely journeyed through a multitude of doctor appointments, physical therapy, and pain rehabilitation programs to reconnect with his true love -- music. His health challenges haven’t stopped him from seeing the silver lining, though. Through his chronic illness, Stefan was able to reframe his situation, start growing his relationship with himself, and be more compassionate. As he’s moved through the trauma that his chronic illness left in its wake, he’s integrated the condition into his identity and taken ownership of it. During our insightful chat, Stefan shares how his illness has helped him be more present for the people in his life, as well as how he uses social interaction and performing to quiet the heavy questioning in his mind. He also shares how he started validating his own pain and reframed his illness to see the riches within.

On the Season Three premiere of This Is Not What I Ordered, I sit down with April Snow as she shares how her life-long health journey with eczema and high sensitivity has taught her how to live an authentic life without guilt. April is a psychotherapist and Highly Sensitive Person (HSP) who encourages others to embrace their own sensitive superpowers through mindfulness, self-reflection, and self-care strategies. Her experiences with chronic illness and sensitivity helped create the foundation for her psychotherapy practice, Expansive Heart, where she’s able to support other highly sensitive people as they learn to let go of self-doubt and prioritize themselves. April’s passion for self-advocacy and her ability to see the unique blessings of her health challenges is inspiring. During this episode, she opens up about how being highly sensitive has helped her understand her illness, the importance of self-acceptance in the healing process, and how she’s learned to create boundaries along the way.

For the season finale of This Is Not What I Ordered, I’d like to take a look back at the amazing guests of Season Two, share some updates from the guests on how they’re doing now, and give my State of the Podcast address as we head into the New Year. I’m also very excited to share a couple of offerings that I’ve created so we can connect on a more personal level during the show’s break.This season had so many beautifully vulnerable conversations and I’m incredibly grateful to have had the opportunity to not only interview these awe-inspiring guests but also to have made so many new friends in the process. As I reflect on this season, I want to take the time to really remember what each guest offered during their episode, share some of my favorite moments and quotes, and give my thanks and appreciation to the wonderful people (like you!) who make this show possible.I’m touched by the support, feedback, and community that has grown since the beginning of this podcast. We truly are making a difference and it all starts with these honest conversations about health challenges and embracing full-hearted living.

The days are getting shorter, sunlight is scarce, and the end of the year is rapidly approaching. That’s why I want to use this episode to check in with all of you before we wrap up 2018. I also want to share a very important (and surprisingly controversial) topic that’s been on my mind: happiness. We all enjoy being happy, especially during the holidays, but the darkest time of the year can also bring some difficult emotions with it. I want to shed some light on why we feel so much pressure to be happy all the time, offer some advice on connecting with your spiritual shepherd, and really dig into our ever-changing emotions for an honest discussion on giving ourselves permission to not be “okay.” There’s something sacred about allowing ourselves to embrace those challenging emotions and truly feel them, even if it means falling apart. I’m so glad that we can use this episode as a reminder that you don’t need to be happy all of the time to embody full-hearted living. I hope you enjoy, and I hope it gives you the permission you need to feel whatever you’re feeling in each moment.

Ramon Shitta is a talented Nigerian storyteller and artist who has been battling a mysterious and ever-evolving undiagnosed chronic illness for most of his life. He strives to capture the beauty in pain through his art and believes that a story can creatively manifest in a myriad of ways; whether that be cooking, painting, dancing, or podcasting.   In this episode, Ramon opens up about the isolation that comes with chronic illness and his uniquely positive views on depression. He also shares a beautiful lesson in being empathetic. We discuss his journey in seeking diagnosis and explore how his illness spurs him to continue researching, learning, and creating amidst the pain. Ramon discusses his difficulty with finding a community he can relate to while being undiagnosed and shares how reconnecting to his body has helped him find peace. You can read the full show notes at www.thisisnotwhatiordered.com

In this episode, I interview Monica Michelle, a children’s book writer, illustrator, and mother of two living with fibromyalgia and Ehlers-Danlos syndrome. A passionate artist, photographer, and author, Monica is truly a woman of many talents. She now hosts the Invisible Not Broken podcast, as well as I Can’t Believe That Happened -- a history podcast for kids and curious grownups.Monica has lived with chronic illness from a young age but she’s never let that dampen her humorous and creative spirit. Embracing the impermanence of life and using her failures as lessons, she’s mastered the art of picking up the pieces and moving on without losing her core role of storyteller. Monica discusses how her lifelong struggle with chronic illness and the realization that there are no guarantees have led her to fearlessly chase her dreams. She explores how her journey has given her remarkable resilience and an unshakable faith in herself. During our colorful conversation, Monica opens up on using humor as a survival mechanism, how she focuses on her true passions to find her core, and she offers creative parenting tips on how she’s raising her kids to be more empathetic.

Drew Althoff is a musician and songwriter, an aspiring middle school teacher, and a committed partner. Recently embarking on his journey with kidney disease, he’s learning how to integrate kidney failure into his life while finding unwavering support and joy through his relationship with his partner. Drew and I sit down for an intimate discussion on balancing the body and spirit and the impact illness has on couples, as well as how he channels his illness into creative energy through music and songwriting.Breaking his journey down into distinctive eras, Drew shares his unique perspective on embracing “the shadow” and how your spirit can keep you balanced when you’re struggling. He shows candid vulnerability as he discusses his upcoming transplant, emphasizes the importance of community and relationships, and offers insight into how he humanizes his illness through humor.Drew’s story of adjusting to a new life with chronic illness and learning to fight for happiness resonates throughout our discussion, and his steadfast determination to be authentic is moving. I hope you find this interview as moving as I did. You can read the full show notes at www.thisisnotwhatiordered.com

Mila Clarke Buckley is a type 2 diabetes advocate and digital storyteller who started her food blog, "The Hangry Woman," after being diagnosed with type 2 diabetes and struggling to find approachable resources to help her manage the chronic condition. Her blog covers topics like diabetes management, cooking, and self-care from the perspective of someone living with type 2 diabetes. Mila’s work has been featured by GE, Social Media Today, Travel Noire, Healthline, and Let’s Get Checked.This week, I discuss affirmations and assertiveness with Mila as she shares her experience dealing with a startling diagnosis and how her journey led her to find her voice by educating others on type 2 diabetes in a relatable way. She offers a genuine look into her struggles with finding the right physician and emphasizes the vital role self-care plays in managing a chronic illness. Mila also advises on the importance of being your own advocate.During this week’s vibrant discussion, she recounts some of her personal affirmations and delves into how she uses them as a nourishing force when she’s feeling overwhelmed. You can read the full show notes at www.thisisnotwhatiordered.com

Derek Avery describes himself as a curious, fidgety, silly-hearted husband and father who has been inadvertently following his heart for years. From retail banking to energy efficiency work, from volunteer youth worker to worship music band leader, from personal development to spiritual formation, he has been on a journey of understanding about how he wants to be in this world, and has found that the key may be starting with vulnerability and self acceptance. Derek is the host of the Badass Vulnerability podcast where he challenges societal expectations and questions what it means to be authentically open and aware. In this episode, Derek examines how he navigates family dynamics amidst chronic pain, the power of resilience and endurance, and how he finds ways to still be of service to others. You can read the full show notes at www.thisisnotwhatiordered.com

This week I sat down with Mariah Power, a Licensed Professional Counselor & Certified Sex Therapist, for an enlightening discussion about her health journey with multiple sclerosis. Utilizing her innate passion for connecting with others, she opened her own private practice in Georgia where she is able to aid clients in not just confronting their anxieties and sexual concerns, but in finding uniquely creative ways to work through them as well. Mariah’s lighthearted approach of finding humor in pain is invigorating as she opens up about her difficult marriage, the fight for a diagnosis, and how she started taking control of her inner narrative.   Mariah sheds light on how chronic illness taught her what to look for in a relationship, the value and joy in embracing your natural sexuality, and how the struggles of her journey have made her stronger and healthier than before. She stresses the importance of accepting your challenges head-on and using creativity to make the most of any situation. I hope you enjoy our talk as much as I did! You can read the full show notes at www.thisisnotwhatiordered.com

In this episode of This Is Not What I Ordered, I had the opportunity to sit down with Ned Buskirk. Ned embodies the definition of renaissance man -- he’s an artist, writer, educator, and founder of the “You’re Going To Die” movement. He’s integrated a distinctive way of confronting loss with compassion to organize events where he invites others to share their experiences with mortality creatively and in whatever way they can. His experiences with chronic illness, grieving, and loss have shaped him into a mouthpiece for acceptance and trusting the unknown. Ned’s dedication to speaking so candidly about death and giving a voice to the fear and anxiety that we have in our bodies and in our lives is empowering. During our chat, he discusses the different meanings behind the saying “It’s okay,” the catharsis of letting go and the relief it brings into your life, and how showing up for his mother’s passing helped him to understand the humility in death. I cannot thank Ned enough for opening up about the impact of his mother’s death, as well as his profound readiness to discuss his own anxiety and struggles with chronic pain and inexplicable illness. This episode is filled with inspiration and a genuine understanding of what it means to show up for life.   You can read the full show notes at www.thisisnotwhatiordered.com

Jasmine Szantyr is a chronic illness blogger & advocate, founder of a production company with her husband, and loving dog mom. Embracing her life with an autoimmune disorder, she used her unique blend of holistic healing and radiant positivity in the face of disbelief to create DrugFreeSpoonie.com -- a blog detailing her health journey with Lyme disease with as few prescription drugs as possible. In this episode, Jasmine discusses how her challenges with Lyme led her on a journey to finding community, mourning her old life, confronting that grief, and overcoming doubts about her illness. She recounts her frustrations with the years-long process of getting a diagnosis, how impactful a chronic illness can be on relationships, and the importance of trusting your intuition. You can read the full show notes at www.thisisnotwhatiordered.com

This week, I change with Emily Whitish, a psychotherapist practicing in Gig Harbor, WA. Emily works with people with medical conditions, injury, and disability and she herself was diagnosed with Crohn’s disease five years ago. In her life and work, she notices how illness reveals all the unworkable and stuck places in our lives, and gives us an opportunity to change the way we see ourselves, our relationships, and our bigger purpose. She loves helping her clients see illness as an invitation to move towards a more rich and meaningful life. In this episode, we hear more about how Crohn’s disease did this for Emily. You can read the full show notes at www.thisisnotwhatiordered.com

In this episode, I interview Jen Matos, a queer Latinx who has lived with lupus for the past 28 years. She graduated from the University of Massachusetts at Amherst with a concentration in social justice education and is a visiting lecturer in Psychology and Education at Mount Holyoke College in Massachusetts. Jen has been learning to live with Lupus since 16, but that hasn’t stopped her from adapting and pursuing her dreams.      Bringing her inner light and love of life to the table, she gives insight on what it means to integrate with your illness. As a young adult, Jen suddenly received another diagnosis: Secondary Pulmonary Hypertension. She has used this unexpected step on her health journey to fuel her dreams, despite preconceived notions of what “sick” people are capable of doing.       When Jen was diagnosed again as an adult, doctors told her she couldn’t do a lot of things anymore. Rebuffing these notions, she now holds a doctorate and regularly goes on adventures with her 6 year old daughter. She credits her mother and her spirituality for her strength, and uses her experiences with juggling two diagnoses to give her new perspectives on life.   I cannot thank Jen enough for giving us a window into her journey. You can read the full show notes at www.thisisnotwhatiordered.com

Leo Newman, whom I interviewed back in Season 1 Episode 11, is back again… but this time with his wife, Erynn. Leo and Erynn were high school best friends who later realized their love for one another in college. They’ve now been married for 12 years and have one energetic 5 year old son, Hudson, who makes every day an absolute joy. Leo is a mental health counselor specializing in the treatment of chronic health challenges and stress, and Erynn is an author and freelance fiction editor. When they committed to one another "in sickness and in health," they had no idea that this would be tested in the first years of their marriage, as Leo developed several autoimmune conditions, including Chronic Kidney Disease, Crohn's disease, and Ankylosing Spondylitis. Because he was healthy when their love story began, Leo's illnesses were an unexpected addition to their plans for the future. However, they credit their deep love for God and each other, support from their friends and family, and a healthy dose of humor with helping them craft a narrative of healing, hope, and restoration for their family--even in the midst of the challenges posed by Leo's health conditions. This was the first couple’s interview on the podcast and I’m so thankful to both Leo and Erynn for being so open and vulnerable with their experiences. You can read the full show notes at www.thisisnotwhatiordered.com

Allison Sattinger is a mama and wife, leathercrafter, silversmith and singer-songwriter. She’s run her business, SunnyRising Leather and Metal, for twelve years and has lived with interstitial cystitis officially since 2016. Her condition went undiagnosed (though certainly experienced) beginning in her twenties. In addition to her own health journey, Allison shares her experience caring for her friend, Kelly Clark, who lived with metastatic breast cancer before passing away in July 2017. This interview is a moving exploration of how love and loss are connected, and how we can all be more gentle with ourselves and our experiences.   You can read the full show notes at www.thisisnotwhatiordered.com

Niko is no stranger to adversity. Growing up as an undocumented immigrant in the US, he’s had to anticipate, face and overcome the harsh unpredictability of life on a daily basis. In 2001, Niko began developing a skin condition called Tinea Versicolor, an infection that causes discoloration of the skin in various forms. Living with a skin condition has inspired him to examine life from many different perspectives. In this episode, Niko shares how dating someone else with a skin condition changed the way he sees his own strengths and what inspired him to create a dating app for people with health challenges. Niko is the founder of the Lemonayde -- a dating app specifically for people with health challenges. Lemonayde is also the first official sponsor of This is Not What I Ordered (cue marching band music)! I really enjoyed diving into this week’s episode with Niko. His insights are so deep and relatable - I hope you enjoy! You can read the full show notes at www.thisisnotwhatiordered.com

Gretchin Gifford is a supervisor at a publishing company, Tarot reader, and spiritual coach. She loves storytelling, everyday miracles, and road trips. She’s a wife and mom who also lives with Crohn's disease. In this episode, Gretchin candidly discusses her challenges with Crohn’s disease well before she was diagnosed over 5 years ago. Her stories are equal parts “bathroom humor” and insights into what it means to live well with health challenges. You can read the full show notes at www.thisisnotwhatiordered.com

Celia Hilson is a psychotherapist, Social Justice Educator and Multicultural Coach. She is a 30-year resident of Amherst, MA and she also has an extensive performance and arts-based background. In this episode, Celia walks us through her experiences after a car accident in 2008. Not only did she have physical injuries to recover from, but she openly shares how the trauma of the event impacted her. Her candid discussion of trying to overcome the fear and anxiety of her accident, as well as her journey through self-care, is so refreshing and relatable. You can read the full show notes at www.thisisnotwhatiordered.com

Allison Puryear has a lot on her plate. She's a mom to a toddler and a kindergartener and a partner to a man she assures me is the best on the planet. Her private practice consulting firm, Abundance Practice-Building, has helped tens of thousands of people in over 30 countries. Allison also owns a thriving therapy practice. In the midst of building this life, or as she says, maybe because of building this life, she was diagnosed with Hashimoto's Thyroiditis last year. She's new to this diagnosis and, as we discuss, learning to balance the necessary rest with her natural drive, playing with a shifting identity, and truly prioritizing the important relationships in her life. You can read the full show notes at www.thisisnotwhatiordered.com

Sarah Sears loves personal growth and self-reflection. It has led her down paths like making art, being a mental health counselor, and practicing ashtanga yoga. In April 2017, she sustained a head injury resulting in a brain bleed that resolved quickly. However, she experiences other, longer-lasting TBI symptoms, like noise sensitivity, balance and vision difficulty, cognitive fatigue, and coordination issues. Her recovery journey has been another opportunity to learn about herself and to listen to a lot of podcasts and audiobooks. In this episode, Sarah addresses her initial challenges with recovery and how she’s still coping with the changes that her illness have brought to her life. You can read the full show notes at www.thisisnotwhatiordered.com

This is Not What I ordered is wrapping up its first season. For this first of hopefully many season finales, I share some of my favorite moments from throughout the season. I'm also joined with many of Season One's previous guests who share their reflections, personal updates, and wishes for you. You’ll also hear from some of the folks who work behind the scenes to put this show together. You can read the full show notes at www.thisisnotwhatiordered.com

Blur is a street artist and poet based in Philadelphia. Her numerous experiences with chronic pain and Lyme disease, including a major setback in 2015, pushed her to take full advantage of the artistic tendencies she previously only explored in private. She wants her artwork to bring out the vulnerability and empathy in everyone who views it and forge a connection with her audience through that sense of catharsis. In the second half of this two-part interview, Blur shares some of her very personal written work, how fulfillment cannot be found solely through materialism, and why she thinks her life has improved as a result of her illnesses. You can read the full show notes at www.thisisnotwhatiordered.com

Blur is a street artist and poet based in Philadelphia. Her experiences with multiple chronic illnesses--including Postural Orthostatic Tachycardia Syndrome (POTS), Chronic Lyme Disease, Hashimoto's Thyroiditis, and Cervical Dystonia--pushed her to take full advantage of the artistic tendencies she previously only explored in private. She wants her artwork to bring out the vulnerability and empathy in everyone who views it and forge a connection with her audience through that sense of catharsis. In the first of a two-part series, Blur discusses how severe illness inspired her to make her art public, making the rebel inside of her to fight back against her obedient tendencies, and the dual aspects of her identity that being an anonymous artist has allowed her to appreciate. You can read the full show notes at www.thisisnotwhatiordered.com

Kirk Nurmi is an attorney-turned-life-coach who overcame not only the infamy associated with defending convicted murderer Jodi Arias, but stage 3 non-Hodgkin's lymphoma as well. After leaving the practice of law, Kirk has drawn on his experiences to fuel a new direction for a more fulfilling life and is now a transformational speaker, coaching lawyers to help unhook themselves from stressful thought patterns and live happier lives. In this episode, Kirk discusses which kinds of control are beneficial vs. which lead to unnecessary stress, the existential concept of self-actualization, and the serenity he found after facing the prospect of dying before his time. You’ll be hard-pressed to find someone more at peace with their own mortality than Kirk is. You can read the full show notes at www.thisisnotwhatiordered.com

Emily Garnett is a former college swimmer and elder law attorney turned stay-at-home mom to her two-year-old son. She was also diagnosed with metastatic breast cancer in November of 2017. Believing in the power of one’s own voice, she began blogging about her cancer and treatment as a way to foster community and educate others. In this episode, Emily discusses reevaluating the healthy/sick and happy/sad binaries, what she hopes to achieve through social media advocacy, and her own breast cancer-oriented podcast “Beyond the Pink Ribbon.” You can read the full show notes at www.thisisnotwhatiordered.com

Parijat Deshpande is a leading high-risk pregnancy expert who guides women to have healthy pregnancies even in the face of complications. She is the host and creator of the pregnancy-focused podcast, "Delivering Miracles." Parijat has also lived with endometriosis for many years, and over the years has managed chronic pain, a miscarriage, and a very complicated pregnancy. She now has a son she treasures immeasurably. In this episode, Parijat discusses how a delayed diagnosis complicated her ability to conceive, the loss she and her husband endured at the end of her first pregnancy, and her use of stress management to improve her prematurely born son's chances. She also talks about the philosophy and humor that have gotten her through even the most dire moments in her life. You can read the full show notes at www.thisisnotwhatiordered.com