This Is Not What I Ordered: conversations on chronic illness, loss + change

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Latest Episodes:

38: Fatherhood + Vulnerability with Derek Avery Nov 12, 2018

Show notes

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

37: Creative Sex + Disability with Mariah Power Nov 05, 2018

Show notes

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

36: Mortality + True Aliveness with Ned Buskirk Oct 29, 2018

Show notes

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

35: Building Spoonie Friendships with Jasmine Szantyr Oct 22, 2018

Show notes

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

34: Illness as a Spiritual Guide with Emily Whitish Oct 15, 2018

Show notes

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

33: Making Friends with Lupus with Jen Matos Oct 08, 2018

Show notes

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

32: Who You Are Is What We Need [Couple's Edition] with Leo Newman + Erynn Newman Oct 01, 2018

Show notes

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

31: Life Is Living Us with Allison Sattinger Sep 24, 2018

Show notes

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

30: Dating with Health Challenges with Niko Sep 17, 2018

Show notes

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

29: Intuition + Epic Bathroom Tales with Gretchin Gifford Sep 10, 2018

Show notes

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

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