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

35: Building Spoonie Friendships with Jasmine Szantyr

How do uninvited life challenges like chronic illness or loss change us? Psychotherapist Lauren Selfridge hosts compassionate, humorous conversations with people who have been there. Through their insights and wisdom, you're invited to explore the bigger questions about life: Why are we here? What does fulfillment really mean? How do our relationships nourish us? And what will we leave behind when we're gone?

Medicine

Science & Medicine

Health & Fitness

Mental Health

Today I’m joined by Brynn Saito: educator, organizer, and award-winning poet. Brynn’s latest collection of poetry, Under a Future Sky, was inspired by her visit to the Gila River in southern Arizona, the place where where her grandparents were imprisoned during World War II era incarceration of the Japanese American community. Together, we delve into that visit with her father and grandparents, and explore the family writing project that emerged from the journey. Along the way, we also discuss her personal health experience with endometriosis and fertility. In this conversation, Brynn examines the intergenerational impact of trauma and the healing power of storytelling. We discuss the Yonsei Memory Project, an initiative Brynn co-founded to honor Japanese American elders' experiences during World War II incarceration. We also focus on Brynn’s personal health journey, navigating endometriosis and fertility challenges, and the intersection between personal and collective healing. Brynn's poignant narrative invites us all to contemplate the transformative potential of storytelling, poetry, intergenerational dialogue, and embracing vulnerability in the pursuit of healing and connection.  Episode Highlights:   Brynn's journey to Gila River: visiting the site of her grandparents’ incarceration during World War II.   Journey through landscapes: From internment camps to fertility struggles, Brynn navigates physical and emotional terrain.   Acknowledging the past: Brynn's storytelling prompts reflection on honoring one's heritage while navigating the present.   Embracing truth: Highlighting bravery in confronting and embracing personal history.   Transformative power of storytelling: Reflecting on healing and self-discovery through narrative.   The Yonsei Memory Project: Preserving and sharing Japanese American history.   Healing through vulnerability: Brynn shares her journey of infertility and the role of poetry in transformation.   Quotes: "It's been quite healing on a multigenerational kind of scale to be able to connect through the generations about this story, about what happened to us." "It can feel scary to be curious or ask what happened…but it's never too late to open that conversation." "Have that trust and faith that healing will continue." "There's something very loving about inviting our family members to step outside of the role they've always been in." "It's about bridging generational gaps and fostering emotional expression." "Your voice is wise now, beyond kindness." "There's something about place and returning somewhere where the energy of ancestors were." "It taps into all these larger questions around just gender and power and social expectations and what it means to mother and be a mother." "Using the poetry and the writing to kind of dance with all of this has saved me.” "When you share your work with the world this way... it's almost like a relief to hear someone being open about this." "It does feel healing... just really less alone and just feeling like, ‘Oh, this is a safe place.’" "I think poetry belongs to all of us." "Sometimes I think of my poems as these little creative little children that kind of live in the world and take on a life of their own." Links:  This Is Not What I Ordered Lauren Selfridge Brynn Saito  

Multigenerational Healing, Poetry + Fertility  with Brynn Saito

This week, join me for a co-hosted episode alongside returning guest, Melissa Platt. She is a clinical psychologist who specializes in working with survivors of complex trauma, and since she last joined me, has received a Ménière's disease diagnosis. In our candid conversation, we explore the complexities of living with progressive health challenges, the impact on one's identity, and the vital role of open and honest communication. Melissa's personal journey serves as a poignant backdrop for us to understand the intricate landscape of life with a chronic health condition, and together, we share insights, laughter, and a reminder that authentic connections and understanding can profoundly influence this journey. Examining the crucial themes of connection and communication within the context of chronic illness, we also shine a light on Melissa’s experiences with Ménière's disease and how she's adapting to progressive hearing loss, as well as my experiences with multiple sclerosis and personal identity. Throughout our conversation, we emphasize the importance of genuine support networks, and share amusing anecdotes that illustrate both the humor and hurdles encountered along our respective health journeys. As you will hear, our dialogue showcases how language, resilience, and accompaniment can make a powerful difference when navigating life with chronic health conditions.  Episode Highlights:   Melissa's Ménière's disease diagnosis and her journey with progressive health challenges   The vital importance of being heard, both literally and emotionally, in our relationships   Navigating the complexities of identity and self-awareness amidst health challenges   Coping with the uncertainties surrounding future health outcomes   The value of compassion and empathy when facing adversity   Amusing miscommunication anecdotes highlighting communication hurdles   The transformative power of non-verbal communication and meaningful connection   Quotes: "I knew this hearing loss was going to happen, and that's why I've been taking steps to stay in communication, to stay in connection, no matter what." "It's not forever, even though my current self doesn't believe that." "When living a life with any kind of chronic health challenges, communication feels so important to find other human beings who you feel heard by." "I think those are two spins on the concept of being heard. One is literal and the other is more of an emotional feeling of being known and witnessed." “I was like, ‘I need to find my people.’" "The power of language in shaping self-perception and self-esteem is truly remarkable." "True connections are formed based on emotional resonance." "Don't give up because there's probably someone feeling the exact same way somewhere."   “Everybody deserves to have people they can text and say, “Guess what just happened?” Or have a deep conversation with, or just sit with and not have to talk and just be around each other - whatever it is that you desire. I think you get to choose your people.” Links:  This Is Not What I Ordered Lauren Selfridge Melissa Platt  

Ménière's Disease, Hearing Loss + Missed Communication

Joining me on the podcast today is our very special guest, Shideh Etaat, an Iranian-American writer. Shideh holds an MFA in creative writing from San Francisco State University and has recently unveiled her debut literary masterpiece, Rana Joon and the One and Only Now. Today, Shideh shares an emotionally resonant narrative, recounting the day of her police officer husband's traumatic brain injury and the following six years since.  Brace yourself for an impactful exploration of the "grief portal," a term Shideh uses to illustrate her voyage through abrupt trauma, a journey that reconnects her with spiritual insights, acceptance, and grace. In the face of seemingly insurmountable challenges, Shideh demonstrates remarkable determination, ushering healing and transformation into her own life and the lives of those around her. The episode unfolds as an intriguing tapestry of themes, including steadfast devotion, the profound impact of grief, and the remarkable strength that arises from profound challenge. Join us as Shideh unveils her extraordinary odyssey through grief and beyond, a journey that will undoubtedly leave you equal parts moved and inspired to embrace your own capacity for growth and renewal. Episode Highlights:   Shideh's childhood experiences, early awareness, and anxiety   Intergenerational trauma from her family's escape during the Iranian revolution   The challenges Shideh encountered in parenthood and healing her inner child   Her husband's traumatic brain injury, and the resulting shock, fear, and resilience   Shideh's shift to a deeper spiritual perspective on her husband's condition   Mobilizing positivity and hope amid medical uncertainty   Protective denial during pregnancy, focusing on her husband's potential   Themes of devotion, grief, resilience, and finding meaning in adversity.   Quotes: "I think for me at least, a lot of parenting is about healing my inner child stuff by doing things differently with my son." "I was experiencing the situation on two levels: which was what I was seeing with my eye and what the doctors were telling me… And then I could see underneath that to the spiritual, soul-level journey of this person who I love deeply. And I felt very strongly like I was playing a role in that. "There's always some goodness you can hold on to and try and focus on." "The idea of comparing our journeys to those around us is so detrimental to our well-being." "Owning your own experience as uniquely yours–that's a beautiful definition of liberation." "I am holding life and death together. I am constantly holding opposing things inside of my body and my heart." Links:  This Is Not What I Ordered Lauren Selfridge Shideh Etaat  

Partner TBI & Journeying Through the Grief Portal

Today on "This Is Not What I Ordered," we're excited to share a special feed drop from the podcast, "Untold Stories, Life with a Severe Autoimmune Condition", where Host Martine Hackett has real, eye-opening conversations with people living with rare, autoimmune conditions ranging from MG and CIDP to Pemphigus. This is their December 27th, 2023 episode: Prioritizing Care: Confronting Postpartum with MG  Nicole is an epidemiologist whose life took an unexpected turn with an MG diagnosis between pregnancies. She had to prioritize how she cared for herself through postpartum depression, while also adapting to parenthood with MG. Nicole discusses how her background in public health provided a foundational understanding of the condition. But ultimately by leaning on her family and caring specialists, she learned to reapproach her life with MG. Through her thoughtful insights, Nicole shares a deeper appreciation for resilience and adaptability through unforeseen health challenges. Subscribe today on Apple, Spotify, iHeart or wherever you get your podcasts!

Introducing Season 2 of Untold Stories: Life With A Severe Autoimmune Condition

My guest this week is Michelle Irving, who combines training with personal experience to offer mentorship and coaching around career and chronic illness. A gifted teacher, and a globally in-demand speaker and writer, Michelle is driven by a mission to de-shame and transform conversations around illness. Drawing upon her extensive training in somatic therapy, cancer survivorship, and women's leadership, her life's work and living legacy are dedicated to helping individuals foster positive self-relationships amidst illness, aiming for lives filled with love, meaningful work, and empowerment. Together, we explore the complexities of chronic illness and the importance of reframing our relationships with ourselves. We also discuss maintaining hope and connection during life's uncertainties, and Michelle shares her four stages of coping with the unknown. Throughout this thought-provoking episode, we’ll explore acceptance, emotional stages of navigating illness, self-compassion, and resilience. Michelle's wisdom, storytelling, and vulnerability make this episode a must-listen.   Episode Highlights:   Embracing uncertainty on the way to empowerment   Fostering self-connection during challenges   Navigating grief and resilience in life transitions   Developing self-trust step by step   Prioritizing curiosity over problem-solving   Cultivating self-trust with a “future-self” perspective   Sustaining hope and connection in life's unpredictability   Seeing chronic illness as a journey   Practicing self-compassion   Understanding emotional stages   Balancing career with self-care   Quotes: "And the one or the couple of things we lose connection to is hope because it feels dangerous. And we lose connection to our longings because it's like, “Okay, what you want has to go in a box, and you can't even open that box until you're well.”" "I'm nervous about traveling… there's little parts of me that are like, “But we really liked our couch.” And there's other parts of me. It's like, “Yeah, but we get to go to Rome.”" "Can I have compassion for myself that I can't have compassion for myself? Yes, I can do that because both things get to be true at once." "No matter where you are, it's never the end of the story." "Acceptance is the opposite of rejection. And if part of what we're doing is rejecting some element of reality, then the most loving response is essentially what you're saying is to create some acceptance of that rejection." "I think my purpose is to not abandon myself and be as connected to myself as possible, so that every moment, even if I don't know who I am in terms of identity, I know that I can trust my heart, and what my heart feels is the next right thing for me." "I need to know that I can have Thursdays to lie in bed regardless, and I need to know where to get help." "We only work with people we love. That's it. If we don't love you, and I don't mean that in a codependent way, but if this isn't a fit, it's not a fit. We don't struggle then to try and work out how to do it because it has to have some ease in the process and some delight." Links:  This Is Not What I Ordered Lauren Selfridge Michelle Irving  

35: Building Spoonie Friendships with Jasmine Szantyr

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