This Is Not What I Ordered

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 enj

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 h

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

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

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

Maria Vogel is an Associate Marriage and Family Therapist based in Los Angeles who works with families and children, as well as those struggling with chronic illness and pain management. She has been working with families for a decade and doing clinical work for the last two and a half years. Maria has also been managing a chronic illness of her own and was recently diagnosed with Lyme disease. In our conversation, Maria dives into the political and bureaucratic difficulty of actually getting a Lyme disease diagnosis, how physical illness and trauma intertwine, and how surrender can actually be a powerful act. She also talks about the existential impact of chronic illness and how she has been able to derive meaning in her life amidst a limiting condition. You can read the full show notes at www.thisisnotwhatiordered.com