Shows
Whole Caregiver"Soaring Together": More with Jillian ArnoldIn this episode of the Whole Caregiver podcast, hosts Erna and Megan engage in a heartfelt conversation with Jillian Arnold, author of 'Soaring Together.' They explore Jillian's journey as a caregiver, the emotional complexities of caring for children with disabilities, and the importance of inclusion and understanding differences. The discussion delves into the balance between caregiving and personal identity, the toll of caregiving on mental health, and the profound impact of loss. Jillian shares her insights on finding beauty in non-traditional lives and the lessons learned from her children, emphasizing that life can be beautiful even when it does...
2025-12-2126 minWhole CaregiverParenting Children with a Rare Disease: Our Conversation with Jillian ArnoldHosts Erna and Megan welcome Jillian Arnold, who shares her family’s journey after both of her children were diagnosed with ASMD, a rare and progressive genetic condition. Jillian Arnold is the proud mom of two children, Roman and Stella, who both live with ASMD, a rare and terminal genetic condition. She’s the host of Confessions of a Rare Disease Mama, a podcast where she shares honest conversations about caregiving, medical parenthood, and finding purpose through life’s hardest moments. Jillian is also the author of the children’s book Soaring Together, which celebrates inclusion and differences, inspired by her own f...
2025-12-0824 min
Confessions of a Rare Disease MamaLetting go of the "shoulds" of the holiday seasonSend us a textThe holidays can feel magical... or overwhelming. For parents of children with medical complexity, special needs, or chronic illnesses, the season often comes with invisible burdens and unspoken expectations. In this episode, I talk about the weight of the “shoulds” we place on ourselves: the traditions we think we have to do, the perfect holidays we imagine, and the grief that surfaces when reality doesn’t match our expectations.Together, we explore how to:Acknowledge the grief without letting it steal joy.Release the pressure of “should” and embrace imperfection.Find momen...
2025-12-0831 min
Actual FriendsNew Evolutionary Biology Theory Exposes the Real Reason Women Go 'Woke'"Actual Friends" podcast hosts Dave Rubin, Jillian Michaels and Dr. Drew Pinsky talk about a new evolutionary biology theory that attempts to explain why women are more likely to adopt "woke beliefs" than men; the one thing that seems to unite the most successful women and debunking the myths of balancing family and work; Texas' lawsuit against Johnson & Johnson and Kenvue for allegedly hiding the link between autism and Tylenol; Arnold Schwarzenegger calling out Gavin Newsom's lies to CNN's Jake Tapper about Newsom's plan to make gerrymandering only temporary; Gavin Newsom telling "The Story Is" host Elex Michaelson why...
2025-10-3153 minConfessions of a Rare Disease MamaLife Lately/Catch up: Road Trips, School Days & Real Talk with My HusbandSend us a textAfter a four-month break, we’re back and catching up on everything! In this episode, I sit down with my partner-in-crime (and life), Donald, to chat about what life has looked like lately for our family. From three back-to-back road trips (yes, we’re still recovering!) to the kids starting in-person school for the first time, it’s been a season full of change, growth, and plenty of stories.We open up about: 🚗 The three road trips that (at times) tested our sanity, but also brought us so much joy 🎒 What...
2025-10-2149 minConfessions of a Rare Disease MamaLife Lately/Catch up: Road Trips, School Days & Real Talk with My HusbandSend us a textAfter a four-month break, we’re back and catching up on everything! In this episode, I sit down with my partner-in-crime (and life), Donald, to chat about what life has looked like lately for our family. From three back-to-back road trips (yes, we’re still recovering!) to the kids starting in-person school for the first time, it’s been a season full of change, growth, and plenty of stories.We open up about: 🚗 The three road trips that (at times) tested our sanity, but also brought us so much joy 🎒 What...
2025-10-2149 min
The Jillian Murphy Showep. 280 How to Build a Profitable Community w/ Coley ArnoldWelcome back, babes, to the Scale Your Sales Podcast! Today’s episode is an inspiring conversation with Coley Arnold, serial entrepreneur and founder of Foundress, a powerhouse community for female founders. From backyard vintage markets to a national movement of women supporting women, Coley shares how she built businesses by accident, discovered her passion for mentorship, and now empowers other entrepreneurs to grow without burnout. If you’re craving more connection, aligned scaling, and real talk on systems, motherhood, and mindset—this one’s for you.
Topics Covered:
How a backyard vintage market turned into a thriving...
2025-07-2327 minConfessions of a Rare Disease MamaBONUS EP: What to do when the world feels like too muchSend us a textEver feel like the world is just... too much? Whether it's the endless news cycle, the weight of caregiving, or just the everyday overwhelm, you’re not alone. In this episode, I’m opening up about what happens to our nervous system when we’re overloaded—and sharing simple, accessible grounding techniques that can help bring us back to center.I’ll walk you through practical ways to regulate your body when it’s in survival or burnout mode, including:Getting outside and standing barefoot in the grass...
2025-06-2626 min
Vigor Life PodcastEP 203: The Power of Coaching and What Really Helps Clients Transform For Good w/ Jen WiderstromJen is a kindred coaching soul and a true coach. She’s been a group trainer, American Gladiator, head coach of Biggest Loser replacing Jillian Michaels, online community builder, magazine cover model, celebrity trainer, and now a lead coach for Arnold Schwarzenegger’s Pump Club. We dive into coaching, career lessons, and fitness industry insights.She's been a go-to expert in entertainment, appearing regularly on LIVE with Kelly and Ryan, The Doctors, and Dr. Oz. Jen also serves on SHAPE Magazine’s Brain Trust and authored the bestselling Diet Right for Your Personality Type.
2025-05-281h 23Confessions of a Rare Disease MamaLife Lately: Solo Parenting, Sick Kids, & School PlansSend us a textIn this casual solo episode, I’m just catching you up on what life has looked like lately over here. From solo parenting while Donald’s been away for job training, to the kids catching colds (because of course they did while Donald's gone), to navigating IEP meetings and school plans for next year—it’s been a lot, but also I'm surviving it!I’m sharing a peek into the daily chaos, the mental load, and some of the sweet moments too. Plus, we’ve got an upcoming trip on the calendar...
2025-05-2830 minConfessions of a Rare Disease MamaCreative Fundraising in the Rare Disease Community – Global Genes Panel RecordingSend us a textIn this special episode of Confessions of a Rare Disease Mama, I'm sharing the live audio from a panel I had the honor of moderating at the Global Genes Rare Advocacy Exchange. This conversation dives into the power of creative fundraising—something so many of us in the rare disease community are tasked with, whether we feel ready or not.You'll hear from three incredible rare parents who are using their voices, talents, and grit to fund life-changing research and support. We talk strategy, heart, and the very real emotional toll (an...
2025-05-071h 06Confessions of a Rare Disease MamaLife Lately: A Rare Mama Catch-UpSend us a textIn this solo stream-of-consciousness episode, I’m catching you up on everything happening in our world lately—from the latest updates on Roman and Stella’s treatment journey, to exciting news about my book Soaring Together, to some personal reflections on life, advocacy, and motherhood.You'll hear about where we are with the investigational brain medication, some hopeful signs we've been seeing, our upcoming family trips, and a big (and bittersweet) decision we’re considering for next year: sending the kids to an in-person school for children with disabilities. I’m sharing al...
2025-04-2332 minConfessions of a Rare Disease MamaNavigating Resources and Grants with Advocacy AbbySend us a textFinding financial support and resources as a rare disease parent can feel overwhelming—but what if there was a platform designed to make it easier? In this episode of Confessions of a Rare Disease Mama, I sit down with Abby Zachritz, also known as Advocacy Abby, to talk about the incredible tool she’s created in partnership with SupportNow to connect families with grants and resources tailored to their child’s diagnosis and location.Abby shares how her own experiences as a mother and caregiver to her...
2025-03-0558 min
Wholly Surrender PodcastSurrendering your EmotionsEver feel like your emotions are controlling you? It's a rough game, but we're throwing around a few things that we've learned about taking our emotions captive and we're sharing places that can get you started too.
Dr. Jamie Arnold | Arnold Chiropractic
www.arnoldchiroclinic.com
Psalm 91 Ministries
https://www.psalm91ministries.net/
Grab the magazine!
https://whollysurrender.com/shop/magazine
2025-02-0328 minConfessions of a Rare Disease MamaReal Food Blended Diets Made Simple: A Conversation with Registered Dietitian Hilarie GeurinkSend us a textIn this episode of Confessions of a Rare Disease Mama, I'm joined by Hilarie Geurink, a registered dietitian with a passion for empowering families to explore real food blended diets for their loved ones. Hilarie specializes in creating personalized nutrition plans that incorporate whole foods, providing an alternative to traditional formula-based tube feeding.We discuss the benefits of blended diets, practical and easy tips for getting started, and how they can positively impact the health and quality of life for children and adults with feeding tubes. Hilarie shares her wealth of...
2025-01-291h 02Confessions of a Rare Disease MamaA Mother’s Legacy: Lauren Williams’ Commitment to GRIN1 Families in Honor of Her SonSend us a textIn this moving episode of Confessions of a Rare Disease Mama, I sit down with Lauren Williams, a rare disease advocate and one of the driving forces behind the CureGRIN Foundation. Lauren shares her journey as a mother to a son who bravely fought against GRIN1, a rare genetic condition, and the heartbreak she has and continues to endure from his passing just over a year ago.Lauren opens up about how she made the decision to continue to advocate after her son's passing, dedicating her life to supporting other families...
2025-01-1753 minConfessions of a Rare Disease MamaGoals for 2025, Tackling Winter Blues, and SNOWMAGEDDONSend us a textAs the new year begins, I’m sharing some personal changes I hope to put into practice in 2025. From doing more gratitude journaling to developing better sleep habits & less doom-scrolling before bed, I’m diving into the shifts in routine I want to cultivate this year.I’m also opening up about how the winter months affect me (especially once the holidays are over) and the intentional ways I’m working to combat the seasonal blues. If you’re someone who feels the weight of the colder, darker days, this one’s for you. T...
2025-01-0723 min
Mother Nature Will Kill YouEpisode 97 - Pour One Out For The Edmund FitzHaley and Jillian get ready for the holidays with a three story episode focusing on shipwrecks that occurred around or on Christmas. Haley talks about the swamp darter for conservation corner.
Sources:
The Christmas Tree Ship, Glenn Longacre, National Archives
The Grim Fate of the Privateer "General Arnold, Patrick Browne, Historical Digression
The Wreck of the Annie C Maguire at Portland Lighthouse on Christmas Eve, Allan Wood, New England Lighthouse Stories
Swamp Darter (Etheostoma fusiforme), Maine.gov
2024-12-231h 31Confessions of a Rare Disease MamaA Rare Mama’s Reflections on the Holiday Season with Yours TrulySend us a textIn this solo stream of consciousness episode, I reflect on the unique challenges and joys that the holiday season brings for families navigating rare diseases and medical complexities. I share practical tips for managing expectations, creating meaningful traditions, and finding joy in the small moments. I'm here to offer encouragement for parents feeling the weight of the season, reminding them that connection and presence matter far more than perfection. Whether you’re scaling back traditions or adapting them entirely, this episode is a gentle reminder that the holidays can still hold magic, even wh...
2024-12-2233 min
Business of Apps Podcast#223: “AI breakthroughs: revolutionizing mobile app marketing" App Promotion Summit San Francisco panelThe holiday season is practically around the corner. We can all hear The Jingle Bells singing and some nice gifts from Amazon are waiting underneath the Christmas Tree.
Anyway, this week, we have yet another exclusive bonus episode for you, featuring the panel discussion from the App Promotion Summit San Francisco 2024.
As you know, we organize the App Promotion Summit several times a year to bring together app marketing, growth, product, CRM, and revenue executives. These events feature panels where industry professionals share their experiences and insights on emerging trends that significantly impact the sector.
2024-12-1640 minConfessions of a Rare Disease MamaTurning Pain into Purpose: Rare Mama, Ashley Haywood’s Advocacy for Sanfilippo SyndromeSend us a textIn this deeply personal episode of Confessions of a Rare Disease Mama, I sit down with Ashley Haywood, a devoted mother and passionate advocate for her 8-year-old daughter, Sadie, who is living with Sanfilippo syndrome. Often referred to as "childhood Alzheimer’s," Sanfilippo syndrome is a rare and progressive genetic condition that profoundly impacts children and their families.Together, Ashley and I explore how our children's life-changing diagnoses reshaped our lives in ways we never expected. We reflect on our shared experience of initially retreating from our communities after receiving devastating ne...
2024-12-031h 06
Moms Like Me Podcast by SupportNowNavigating Grief, Joy, and Resilience as a Medical Mama with Jillian ArnoldJoin us for an inspiring and heartfelt conversation with Jillian Arnold on the Support Now podcast. As a mom to two incredible children diagnosed with the ultra-rare condition ASMD (acid sphingomyelinase deficiency), Jillian shares her journey of navigating medical complexities, grief, and finding joy amidst the challenges. Learn how she found strength, built community, and continues to spread awareness through her advocacy, social media, and her new children’s book, Soaring Together. SupportNow.org is dedicated to empowering families facing medical challenges, and Jillian's story is a powerful testament to resilience and love.
2024-11-2225 min
The Rare Life176: Season 10 Finale | A Spicy Season, Sticker Club Tallies, + What’s Coming Next w/ Alyssa NutileSeason 10 is coming to a close, and it’s been a good one! While a little shorter than seasons in the past, we covered some big topics from hospitalizations to crunchy medical parenting to online bullying with some amazing stories mixed in. Outside of the podcast, we added two new board members, and we had our most successful round of Sticker Club yet!
So to celebrate the end of this season, per tradition, we’re sharing a little recap of the season, plus audio from three listeners as they describe which episodes touched them the most from Seas...
2024-11-2130 min
Good Not GreatHeartbreak Feels Bad in a Place Like ThisWarning, this was recorded in the past, Tuesday night to be exact, before the republic fell. Anyway here we are trying to throw some levity into the ether. Jill needs to explain the Senate vs. House of Representatives to Ryann…again. Ryann has some questions on this Beyoncé Levi’s commercial. Jillian continues to be “the biggest non-advocate of hiking”. Ryann likes Rylee Arnold and Stephen Nedoroscik on Dancing with the Stars (also Stephen is 26, Rylee is 19; so he’s not 19, Ryann has more of a chance). Jennifer Lawrence is pregnant with her second child, congrats girl! What do we think of...
2024-11-071h 00Confessions of a Rare Disease MamaSpecial Family Transitions with Special Needs Divorce Coach, Mary Ann HughesSend us a textIn this episode of Confessions of a Rare Disease Mama, we dive into the complexities of family transitions with Mary Ann Hughes, a certified Special Needs Divorce Coach. Mary Ann took her own experience of navigating divorce after 21 years of marriage, and raising two children on the autism spectrum, into a mission to help others. Mary Ann shares her invaluable insights and compassionate guidance on navigating divorce and separation when a child has profound medical and/or behavioral needs. We discuss the unique challenges these families face, from planning for financial security to...
2024-11-0540 minConfessions of a Rare Disease MamaMini Ep: My EXCITING, BIG Announcement!Send us a textTune in to this mini episode to learn what my exciting, big announcement is! It's a very special project I've been quietly working on for years & cannot wait to share it with you all!Donate to Hurricane Helene recovery efforts in NC hereDonate to Hurricane Helene recovery efforts in FL hereResources & Links for this episode: Buy Soaring Together: Amazon, Barnes & Noble, or locally at Bike Trail Books in Loveland and the Cincinnati Zoo Gift Shop Learn more about our brave warriors...
2024-10-0116 min
Wholly Surrender PodcastEquipping Your KidsThis week we're taking a deep dive into equipping your kids. After chatting with moms and being in my own challenging moments, I realized that we underestimate the power of teaching our kids and equipping them to partner with us everyday. By paying attention to a few things and making a few pivotal adjustments, you might be surprised at the progress your household makes!
Here's all the resources I mention in the episode and please reach out to me if you want more information!
Shop House of Joppa!
2024-09-3043 minConfessions of a Rare Disease MamaThe Eight Different Types of Advocacy with Director of Community Engagement of Global Genes, Daniel DeFabioSend us a textIn this episode I welcome back (for a repeat appearance!) Director of Community Engagement of Global Genes, Mr. Daniel DeFabio. During our conversation, we dive deep into the many facets of advocacy that we, as rare parents and caregivers deal with. Daniel shares his vast knowledge and experience in the rare disease community and together we break down the eight different types of advocacy that every rare disease parent/caregiver or patient can engage in.From policy advocacy to school support, Daniel explains how each form of advocacy plays...
2024-09-1758 min
Wholly Surrender PodcastSurprising Things You Didn't Know About Your Health with Dr. Jamie ArnoldIn this episode, we tackle all things nutrition. Dr. Jamie is a chiropractor and functional wellness practitioner who specializes in helping moms feel like themselves again by taking a holistic approach to health.
We talk about the surprising thing most moms don't know about their health, simple steps to start supporting our bodies better, stewarding the whole being, and so much more! It's full of information you won't want to miss.
CHECK OUT DR. JAMIE'S RESOURCES + HER EMAIL LIST
recipes: Recipes | Arnold Chiropractic (arnoldchiroclinic.com)
website: Goddard Chiropractor | Godd...
2024-09-1653 minConfessions of a Rare Disease MamaOfficially entering my self love eraSend us a textEnjoy this solo catch-up episode! Some things I bring up during this episode:-Our kid's starting school (homebound vs. in person)-Roman's upcoming SIXTH birthday & fundraiser-Dealing with ignorant comments online-What quality of life means to me and my children-Upcoming weekend trip I have planned (without the hubby and kids)!-How it felt turning 36 this summer and officially entering my SELF LOVE eraListen to my episode on the Rarely Normal PodcastListen to my story episode on the Rare Life
2024-09-0328 minThe Rare Life164: Jillian’s Story | Medical Mom x 2 and the Saying “Someone Always Has It Worse”Before we have children, most of us never envision what it would be like to raise a disabled child...and certainly not two of them with the same degenerative disease (Acid Sphingomyelinase Deficiency, ASMD for short, also sometimes called Niemann Pick Disease Type A/B). But this is the exact situation Jillian Arnold found
herself in after the birth of her daughter, Stella.
In this tender, raw episode, Jillian describes what it was like navigating a surprise pregnancy in the midst of receiving her son Roman’s diagnosis, the gut-wrenching news that her daughter had the same di...
2024-08-2951 minConfessions of a Rare Disease MamaPrioritizing your mental health as a caregiver with Founder and Executive Director of We Are Brave Together, Jessica PataySend us a textI am back this week with a lovely conversation with the wonderful Jessica Patay, Founder & Executive Director of the non profit We Are Brave Together. In this episode we talk about the importance of respite as a caregiver, her experience as a mother and caregiver to her son, Ryan, who is living with Prader-Willi syndrome, how her non profit came to be, as well as the new anthology they recently released called "Becoming Brave Together," along with so much more. Happy listening, friends!Buy Becoming Brave Together on amazonLearn m...
2024-08-2058 min
Life Without Secrets with Jillian RiddellNavigating the Six Pillars of Health with Tessa ArnoldIn this powerful episode of Life Without Secrets, host Jillian delves deep into the importance of holistic wellness and self-connection with guest Tessa Arnold, co-founder of Snapback Energy and the Balance of You company. Tessa shares her personal journey of self-discovery, overcoming challenges, and developing self-love and compassion through the six pillars of health. Don't miss this enlightening episode filled with practical tips for incorporating holistic wellness into your daily routine and fostering a deeper connection with yourself and others.“Before we make that next decision, before we say the next words that we can't take back, yo...
2024-08-0747 min
Rarely NormalEpisode 22: Jillian Arnold | ASMDWe're kicking off Season 2 with Jillian Arnold. It was an honor to have her in the studio sharing her love and life with her two incredible kids - Roman and Stella. Both have ASMD (Acid sphingomyelinase deficiency) and her story is definitely one to share! Her perspective on rare disease is so unique and powerful.
2024-08-0651 minConfessions of a Rare Disease MamaOur MAW Disney trip recap with special guest (& my better half), Don ArnoldSend us a textFor our very belated Father's Day episode I have my favorite baby daddy & life partner on, Donald to recap our incredible week at Disney for Stella's Make-A-Wish trip. We talk about some of our favorite things we did there and share some tips to other medical parents who are considering a MAGICAL trip to Disney. Happy Listening, friends!Feeling overwhelmed by the challenges of raising a medically complex child? Join me at the upcoming Powerful Medical Parenting Summit! We will explore strategies, resources, and support to help you tackle isolation...
2024-07-0141 minConfessions of a Rare Disease MamaMini solo episode: If I could go back in timeSend us a textWith the passing of Memorial Day weekend, we get to another anniversary of our D-Day. 5 years since our entire lives were flipped upside down. Join me during this mini solo episode as I share some things I wish I could go back and tell myself at the time of Roman's diagnosis, knowing what I know five years in.Resources & Links for this episode: Buy Soaring Together: Amazon, Barnes & Noble, or locally at Bike Trail Books in Loveland and the Cincinnati Zoo Gift Shop Learn more...
2024-06-0417 minConfessions of a Rare Disease MamaMission: Inclusion with Speech Language Pathologist & inclusive children's book author, Megan CraftSend us a textWelcome to the podcast, Megan Craft! Megan is a Speech Language Pathologist, wife and mother of two, who saw an unmet need in the community when she kept hearing from parents of her patients that their children were not represented in books. She felt called to do something about it, so she started her children's disability inclusive book series called Mission: Inclusion. Through her series she is working towards expanding diversity of book characters to include children with varying types of disabilities. She draws inspiration for her characters from all the children/adults...
2024-05-2147 minConfessions of a Rare Disease MamaHow to get through a long hospital stay & my inpatient must-havesSend us a textIn honor of Roman being home for one whole year from our terrifying 2 month PICU stay, I decided to compile a list of all my must-haves while I am inpatient with my child. I also share other tips for holding onto your sanity while you are in the midst of a long and unexpected hospital stay with your child. Happy listening, yall! Shop all my inpatient must-haves below:https://www.amazon.com/shop/confessionsofararediseasemama/list/35OEIGSFEA1H4?ref_=aipsflist_aipsfconfessionsofararediseasemamaResources & Links for this episode:...
2024-05-0740 minThe Rare Life157: Friendships with People Who Don’t Have Disabled Kids w/ Jillian ArnoldFriendship, especially with those who don’t have disabled children, gets more complicated once you’ve had your own child with disabilities. It’s not necessarily fair, but it doesn’t change the fact that we often end up interacting differently with friends we had before our children were born.In this episode of The Rare Life, I’m joined by Jillian Arnold, host of her own disability parent podcast and mom to Roman and Stella, who both have ASMD (a.k.a. Niemann Pick Disease Type A/B).
We dig into all the aspects of befrien...
2024-04-181h 12Confessions of a Rare Disease MamaAll things TRAVEL with Accessible Adventures Founder, Kristy CookSend us a textI hope ya'll have a pen and paper to write down ALL the amazing travel tips this week's guest shares with us! Kristy Cook is a mother of four (one who is diagnosed with a rare form of Epilepsy) & the founder of Accessible Adventures. She believes that nature is meant for EVERYONE and is very passionate about accessible travel. This week she shares more about her family, how they got started in all their accessible adventures, and shares so many travel tips for families of medically complex children. Happy listening, friends!
2024-04-161h 22Confessions of a Rare Disease MamaMy inner debate on a third child and what I have come to realizeSend us a textThere are SO many complex emotions that come along with the question of potentially having more kids- ESPECIALLY if you have one (or in my case, two) that have severe medical needs. There are many pros and cons to weigh and it's something that has been weighing heavy on my heart lately as my husband and I (and our kids) get older. Join me for a good old fashioned solo episode this week as I share my internal struggle with this and what I have come to realize lately.
2024-04-0321 minConfessions of a Rare Disease MamaTalking about all the things with The Rare Life's Madeline CheneySend us a textThis week I sit down with founder and host of The Rare Life, Madeline Cheney. She started her podcast in 2020, but the seed was planted 3 years prior—when doctors found troubling results at her 20-week ultrasound that pointed to a rare syndrome during her pregnancy with her second child. She and her husband Juston have two beautiful children, their 7-year-old daughter Wendy, and their now 5-year-old son Kimball. I have been a long time fan of the Rare Life, so I was so excited to talk with Madeline and learn more about her an...
2024-03-261h 22Confessions of a Rare Disease MamaTurning grief and trauma into growth and healing with Past Life Regression Therapist, Alena GourleySend us a textThis week I sit down with the beautiful, wise and talented, Alena Kupchella Gourley. Alena is a Licensed Social Worker, Clinical Hypnotherapist, psychic, medium and spiritual guide, who specializes in hypnotic healing and past life regression. Alena works with her clients to heal current or past relationship issues, physical, mental or emotional traumas or pain, such as phobias, anxieties, addictions, depression and anxiety, improving sports performance, stress management, weight loss and a positive body and food relationship. Self-Love, Self-Acceptance and Self-Forgiveness is the driving force behind her work. After Roman's diagnosis, I...
2023-12-261h 00Confessions of a Rare Disease MamaCatchup/ dealing with the holiday bluesSend us a textIt's been a whirlwind month, so I'm catching you all up on what's been going on with us lately during this episode. I also touch on some of the inevitable feelings of jealousy I felt over the holiday and how I was able to move past them. Happy Listening, friends! Resources & Links for this episode: Buy Soaring Together: Amazon, Barnes & Noble, or locally at Bike Trail Books in Loveland and the Cincinnati Zoo Gift Shop Learn more about our brave warriors: saveromanandstella.com Support our family: GoFundMe Follow u...
2023-12-0221 minConfessions of a Rare Disease MamaHow to fundraise like a BOSS with special guest and fellow rare mama, Brittany MarkhamSend us a textThis week I have my friend, Brittany Markham, on the podcast to chat all things fundraising! Guys, I am in awe of all that Brittany has been able to accomplish since her son Damian's ASMD diagnosis. She has raised over a million dollars toward research for treatments for ASMD. Over. One. Million. Dollars. As I'm sure you all know, the pressure us rare parents feel to raise money for our children's diagnosis' on top of ALL the other stresses that come along with raising a child living with a rare disease is no...
2023-10-311h 22Confessions of a Rare Disease MamaLife UpdateSend us a textI'm officially a workin' woman again, guys. Okay, well let me clarify- a PAID working woman :)Join me in this episode as I give some life updates on what we've been up to and the feelings and emotions I have had as I made the decision to go back to work (super part time). Happy listening, friends!If you feel called to donate to help the innocent children who are being affected in the Gaza and Israel Emergency you can do so HERE.Donate to the International R...
2023-10-2326 min
Conversations Live with Stuart McNishWorkplace AccessibilityOn Oct 10 we will be joined by an outstanding panel of people actively engaged in fostering workplace accessibility from a variety of perspectives – not just as it relates to disability, butdifference and diversity of all types.The panel:Stephanie Cadieux - Canada’s first Chief Accessibility OfficerCharlotte-Anne Malischewski - Human Rights Commission interim Chief CommissionerMark Wafer - Disability rights activist and keynote speakerWendy Lisogar-Cocchia - Pacific Autism Network founder & directorKathleen Reid - Switchboard PR founder & Chief Communications OfficerJillian Frank - KPMG partner, employment & labour lawParm Hari - Vancouver Fraser Port Authority Vice-President, Peop...
2023-10-111h 26Confessions of a Rare Disease MamaWhen the "FOMO" starts creeping in as a medical parentSend us a textHave you experienced FOMO as a special needs parent? Of course you have. We all have. In fact, for us, it's a daily struggle. There are SO many more things for us to consider when asked to do something: is it handicap accessible? Will it be too much stimulation and trigger more seizures? How many people will be there? Will they be exposed to too many germs? What if they get sick again and end up back in the hospital? Will there be somewhere where we can change them? This week...
2023-10-0624 minConfessions of a Rare Disease MamaIs my child's diagnosis a "karmic wake up call" from the universe?Send us a textHas this thought ever crossed your mind as a parent with a life limiting illness or condition? You are not alone. I recently had a listener reach out to me and suggested this as an episode topic (thanks Sara!). She said she has struggled with the thought that somehow her son's terminal diagnosis was her "karmic wake up call" to be a better person and couldn't shake the feeling that maybe some poor choices she made in her 20's led her to this. Am I a believer in karma? Absolutely. HOWEVER, I definitely...
2023-09-0324 minConfessions of a Rare Disease MamaCoffee & catchupSend us a textWhew! The past few months have been BUSY. I'm going to catch you guys all up on this episode. As always, thanks for joining me on this wild ride. Happy listening, friends!Resources & Links for this episode: Buy Soaring Together: Amazon, Barnes & Noble, or locally at Bike Trail Books in Loveland and the Cincinnati Zoo Gift Shop Learn more about our brave warriors: saveromanandstella.com Support our family: GoFundMe Follow us! Instagram: @confessionsofararediseasemama TikTok: @rare_mama Facebook: Jillian Arnold & Confessions of a Rare Disease Mama Get your FREE P...
2023-08-1526 minConfessions of a Rare Disease MamaMy top travel tips for road tripping with your medically complex childSend us a textThere was a time, back at the beginning of our children's diagnosis, where we thought traveling was just no longer an option for us. We just didn't see how it was doable to ever go on a vacation with not just one, but two children in wheelchairs (and A LOT of medical equipment). Just the thought of it alone was incredibly overwhelming. As we gear up for our third family road trip with our kids next week, I wanted to share some of my top travel tips with you on ways to decrease...
2023-07-1423 minConfessions of a Rare Disease MamaAin't no shame in my anti-depressant gameSend us a textWelcome back! Join me this week as I fill you all in on what's been happening in our life over the past couple months (and why my stress and anxiety has been through the roof lately), the importance of taking care of your mental health as a caregiver parent, and why I decided it was time to start taking my anti-depressants again. Resources & Links for this episode: Buy Soaring Together: Amazon, Barnes & Noble, or locally at Bike Trail Books in Loveland and the Cincinnati Zoo G...
2023-06-3028 minConfessions of a Rare Disease MamaA Father's Perspective with Rare Disease Dad & Director of Community Engagement for Global Genes, Mr. Daniel DeFabioSend us a textHappy (almost) Father's Day to all you incredible Dad-vocates out there. This week I spoke with one exceptional Father, Daniel DeFabio, that saw the injustice of the rare disease world after his son Lucas, was diagnosed with Menkes Disease and decided to take action. Daniel has made a career out of spreading awareness and honoring his son's memory as a rare disease advocate. He co-founded Disorder, the rare disease film festival, as well as the Disorder Channel, is a writer and blogger in residence for Courageous Parents Network, and is the Director of...
2023-06-1255 min
Thanks For Coming InLaya DeLeon HayesLaya DeLeon Hayes talks "The Equalizer", growing up in the industry, her new film "The Angry Black Girl and Her Monster", and the time a casting director left the room in the middle of her scene!About Laya:Laya DeLeon Hayes currently stars opposite Queen Latifah on the CBS series “The Equalizer,” and is perhaps best known for voicing the titular role in the BAFTA, Emmy® and Peabody Award-nominated animated series, “Doc McStuffins,” which earned her a NAACP Image Award nomination. Hayes was just 9 years old when she booked the landmark role as the first Black ani...
2023-06-0838 minConfessions of a Rare Disease MamaTop lessons I have learned in my first four years of being a rare disease parentSend us a textIt's hard to believe that this past weekend has marked FOUR whole years of being on this rare journey. I have been reflecting a lot the past week on how much my life has changed over the past four years and everything I have learned since becoming a rare parent. Join me during on episode as I discuss some of my top take aways of navigating this crazy beautiful life. Listen to Jillian chat with the ladies of the Nari Nest podcast here: https://podcasts.apple.com/us/podcast/ep-4-self-care-perspective-of-a-rare-disease-mama...
2023-05-3038 min
Nari NestEp 4: Self-Care - Perspective of a Rare Disease Mama
This week let’s delve into self care! We hear this buzz word constantly. What does it actually mean? Is it feasible with the invisible loads we are carrying as #moms? We will take a deeper dive into what this means specifically for our fellow moms who are caregivers for kiddos who need a different level of nurturing, with special guest Jillian Arnold
IG: @confessionsofararediseasemama
Podcast: Confessions of a Rare Disease Mama
Website: SAVE ROMAN AND STELLA
GoFundMe: Donate Here
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2023-05-261h 06Confessions of a Rare Disease MamaHow to best support the caregiver parent in your lifeSend us a textAre you wondering how you could best support the parent in your life who's child may have just been diagnosed with something life altering or is dealing with a lot of complex medical issues? You are not alone! This episode I share all the great responses I got from listeners after taking to social media to pose this question as well as sprinkle in some of our own personal experience and what we found to be most helpful when we were stuck in serious survival mode with our kids after receiving t...
2023-05-1632 minConfessions of a Rare Disease MamaWhere I have been the past two monthsSend us a textI am back from my unexpected break and I am here to catch you all up on what has been happening in our family the past two months. For those of you who are unaware, our son, Roman, just got back home after a 55 day stay at our children's hospital (49 of which were spent in the PICU). He was intubated two times during his hospitalization (yes, two) for a total of 19 days while battling viruses that turned into a viral pneumonia and then developed a bacterial pneumonia which led to a very scary e...
2023-05-0334 minConfessions of a Rare Disease MamaHow to find and manage the right care team for your medically complex childSend us a textWelcome back (and happy Valentine's Day)! This week I dive deep into the importance of surrounding yourself (and your child) with the right team of medical professionals. I truly believe that parents and doctors are a collaborative team (especially when it comes to caring for our rare disease/medically complex kiddos) which is why it is VITAL that you are able to work well together. Our children's lives (quite literally) depend on it. Let's get into it! Resources & Links for this episode: Buy S...
2023-02-1430 min
39 Minute ConversationsEpisode 14 - Alisha Ketry (I'm Totally Fine! American Dad!)In this episode, Brian T. Arnold has a 39-minute conversation with writer & comedian Alisha Ketry (I'm Totally Fine, American Dad).Listen to us talk about when she knew she wanted to be a writer, how her career got started, joining the American Dad writers' room, what it felt like the first day on set of her first feature film, making a movie during the height of covid, how surreal it was when her movie was released on her wedding day, and much more.You can find Alisha on Instagram at @alishaketry. And check out her...
2023-02-0740 minConfessions of a Rare Disease MamaCareer transitions and life as a rare disease mom to twins with Angel Aid Cares Operations Manager, Megan LodenSend us a textThis week I sat down with Angel Aid Operations Manager and fellow rare mama, Megan Loden. Megan talks all about her experience as a Mom with identical twin girls both living with Familial Cerebral Cavernous Malformations and everything that comes along with it. We discuss career transitions after a diagnosis, the important role social media plays for a rare disease parent, how a rare diagnosis can affect your relationship with your spouse, and finding the humor amongst the heaviness. Megan is also currently working on the HODA Board of Directors in...
2023-01-311h 04Confessions of a Rare Disease MamaThe word(s) I will live by in 2023Send us a textWelcome back! This was a BIG week for us... Our baby turned three! Hear all about Stella's birthday recap + my word(s) for 2023: LETTING GO. I want to go into this next year feeling MUCH lighter and this episode I tell you ALL the ways I plan on doing that. Happy listening, friends!PS. My apologies for all the background/fumbling around noises during this episode. At times it sounds like I am quite literally wrestling with the mic, so I will be much more conscious of this when I...
2023-01-1730 min
Long Shot Leaders with Michael SteinHow to stick with your new year's diet and fitness plan with celebrity fitness guru Obi ObadikeHow to stick with your new year's diet and fitness plan with celebrity fitness guru Obi Obadike Obi Obadike is a Telly award winning TV host who has authored more than 100 articles for fitness magazines and fitness sites. He is a best-selling author of the diet and exercise book TheCut in which he co-authored with Hollywood Actor Morris Chestnut that came out April of 2017. He has been a guest as an author and expert on national daytime talk shows such as Wendy Williams, Steve Harvey, Dr Oz, Rachael Ray, Access Hollywood, Home & Family, The Today Show, Roland...
2023-01-1643 minConfessions of a Rare Disease MamaCheers to a new year! Our top moments of 2022Send us a textAs 2022 winded down, I compiled a list of our top moments of the year that I share with you in this episode. Looking back on the past year, I realized that we have accomplished a hella-lot as a family and I am taking this moment to reflect on it all. I have high hopes that 2023 will have even more good things in store for us and our babies!I'd love to hear some of your amazing moments or big accomplishments from the past year! DM me on Instagram @confessionsofararediseasemama or through...
2023-01-0332 min
The Official Adventures in Odyssey PodcastWhat's going to happen to Eugene? How did Jillian find that sweatshirt? Why make Sky Feldstein a baddie? The team answers.Writer/director Kathy Buchanan, executive producer Dave Arnold, showrunner Marshal Younger, and line producer Nathan Hoobler answer your questions about Album 73, Eugene, Katrina’s brothers, and more.
2022-12-2825 minConfessions of a Rare Disease MamaWalking through that pesky tunnel of griefSend us a textMy apologies for the late upload! Life has been crazy the past week, as I'm sure it's been for all of you as well- all that holiday madness, right?! This episode I discuss how I handled some triggering feelings of grief and sadness that came over me recently after I found out about the passing of a little girl in the rare disease community. Resources & Links for this episode: Buy Soaring Together: Amazon, Barnes & Noble, or locally at Bike Trail Books in Loveland and the C...
2022-12-2319 minConfessions of a Rare Disease MamaHow to fit in some fun during the busy month of DecemberSend us a textWelcome back! This week I catch you guys up on what's been going on in our lives over the past seven days (SPOILER ALERT: Roman FINALLY started his experimental med!) December can be a stressful and VERY busy month for everyone (but most especially us, special needs parents), so I also discuss how our family is making it a priority this month to do plan AND execute some fun and festive activities. Learn more about A Kid Again: https://akidagain.org/Resources & Links for this epi...
2022-12-1322 minConfessions of a Rare Disease MamaFamily planning after a diagnosis with special guest and fellow rare mama, Taylor SabkySend us a textMy apologies for this episode being a little late- I'm getting over my third (yes, third) illness of the month (when will it end?!) This week I sat down with a dear friend of mine, Taylor Sabky, to talk all things IVF and family planning after a diagnosis. Taylor is a teacher and fellow ASMD mama whose brave warrior, Purnell, gained his wings back in 2019. Taylor is someone I have looked up to as a rare mother and sought out guidance from in the early days of Roman & Stella's diagnosis journey...
2022-12-061h 09Confessions of a Rare Disease MamaA COVID-style ThanksgivingSend us a textAdenovirus, COVID, RSV.... Will will it end?! Join me as I recap our crazy Thanksgiving week.It's #GIVINGTUESDAY! If you are in a giving mood, please check out some foundations that are very near and dear to my heart:Donate to Wylder Nation Foundation to help in the fight for my children's lives: https://wyldernation.org/join-the-fight/you can also donate through our Go Fund Me:https://www.gofundme.com/f/save-roman-and-stellaDonate to Parental Hope:https://parentalhope.org/donate-now/
2022-11-2922 minConfessions of a Rare Disease MamaLearning when to let go of control (or as my Grandma always said, "que sera sera!")Send us a textI was planning on talking about something totally different this episode and then my husband tested positive for COVID and my plans changed :)We have successfully been keeping this dreaded virus out of our house for the past three years.... until now. The thought of our kids getting COVID has haunted us since this mess all began (much like every other parent of medically fragile children). This episode I talk all about how you can only control so much when it comes to your children's health and at a certain point...
2022-11-2220 minConfessions of a Rare Disease MamaStepping out of survival mode and putting your best self forward with special guest: podcast host and life coach, Lauren LowerySend us a textI was so eager to sit down and chat with my special guest this week, the incredible Lauren Lowery. Lauren is a wife, mama to two (one of whom is diagnosed with the ultra rare disease, Aicardi-Goutieres syndrome), ICF certified and trauma-informed life coach for special needs moms, and podcast host of Overcome the Overwhelm. What I love most about Lauren (besides her soothing and cheerful "disney princess-esque" voice) is her ability to get to the root issues of WHY some of us are stuck living in survival mode. Through her 12 week coaching...
2022-11-1551 minConfessions of a Rare Disease Mama'Tis the season for colds and flusSend us a textFall is hands down my favorite season- I love the changing leaves, cooler weather & crisp fall air, pumpkin flavored everything and the anticipation of the upcoming holiday season. But you know what I don't love about fall? That's right- the dreaded cold and flu season. Snotty noses and coughing EVERYWHERE. This year seems to be worse than previous ones and our house has finally succumbed to whatever has been making its way around. This week I tell you all about our unexpected trip to the ER and the importance of speaking up...
2022-11-0831 minConfessions of a Rare Disease MamaOur BIG newsSend us a textThis week I finally get to share the big news that we have with you all!Learn more about Parental Hope and donate to their foundation:https://parentalhope.org/Resources & Links for this episode: Buy Soaring Together: Amazon, Barnes & Noble, or locally at Bike Trail Books in Loveland and the Cincinnati Zoo Gift Shop Learn more about our brave warriors: saveromanandstella.com Support our family: GoFundMe Follow us! Instagram: @confessionsofararediseasemama TikTok: @rare_mama Facebook: Jillian Arnold & Confessions of a Rare Disease Mama Get your FREE...
2022-10-2525 minConfessions of a Rare Disease MamaMaking the leap into a healthier lifestyle with Nutrition Coach and Personal Trainer, Sabrina MillerSend us a textThis week I had a wonderful conversation with the fabulous Sabrina Nicole Talerico Miller. Sabrina is a NSCA certified Personal Trainer, a Certified PN1 Nutrition Coach, Wife, Mom, and entrepreneur who specializes in vegan and vegetarian coaching. As a busy mom herself, she sheds some light and shares some tips on how we, as caregivers, can all incorporate small (and very realistic) changes into our daily lives to be the healthiest and happiest versions of ourselves. (And guess what? It doesn't involve spending hours at the gym because let's be real- ain't nobody...
2022-10-1853 minConfessions of a Rare Disease MamaCelebrating every inch-stone!Send us a textJoin me this week as I give some updates on where we are in the process of getting the second medication we so desperately need for our kids, knowing when to call in the "big wigs" and the importance of celebrating every single little inch-stone our children make!https://www.confessionsofararediseasemama.com/https://www.saveromanandstella.com/Follow on instagram: @confessionsofararediseasemamaI'm in TikTok now! @rare_mamaResources & Links for this episode: Buy Soaring Together: Amazon, Barnes & Noble, or locally at...
2022-10-1125 minConfessions of a Rare Disease MamaOne family, two different rare diagnosis' with special guest (and a TRUE rare disease warrior mom) Nadia SlatchSend us a textYou guys. I'm so excited to share this beautiful conversation with you this week.Nadia is the definition of a true super mom. After giving birth to two healthy children, she had her third child, Zayn, who was diagnosed with Niemann Pick Disease Type C. After dealing with the devastating diagnosis and then loss of her beautiful boy at age 4, she gave birth to another precious son, Rayyan, who was later diagnosed with a completely different rare and life limiting disease than his late brother. Join us as we discuss what it...
2022-10-041h 05Confessions of a Rare Disease MamaStream of consciousness/ Roman turns FOURSend us a textJoin me as I recap Roman's big FOURTH birthday celebration! I also look back on how amazing and difficult the past four years of being a mother have been. We have come a long way from where we started and I can say without a doubt that the person who is sitting here typing this is not the same person she was four years ago (in all the best possible ways)! Check out the birthday reel I posted in honor of my sweet boy turning four: https://www.instagram.com/p/Ci...
2022-09-2719 minConfessions of a Rare Disease MamaReminiscing about our big Florida trip with special guest: my husband, (and car-packer extraordinaire) Don ArnoldSend us a textThis week I have my husband, Donald, join me to talk all about our first ever road trip with our two (medically complex) kids. It was quite an adventure and also 100% worth all the stress beforehand! I hope listening to our experience gives all you other medically complex parents the confidence you need to plan that trip you've been thinking about with your family. I promise it will all work out and the memories you make with your little ones will be priceless. Also... We were on the news again last w...
2022-09-2029 minConfessions of a Rare Disease MamaLife update/stream of consciousness and how I'm learning to let grief & joy co-existSend us a textThis episode I'm catching you up on what's been happening in our week and discussing the importance of learning to let grief and joy co-exist. As summer comes to a close, it's time for kid's to go back to school and cue: all the back to school photos that are smeared all over my instagram & facebook walls. Last year at this time, seeing these photos was a painful reminder that my children WEREN'T going to school. Yet another huge milestone/experience that we were missing out on. Listen in on how I overcame...
2022-09-1329 minConfessions of a Rare Disease MamaBest in class caregiving with mejo app founder Ryan SheedySend us a textI'm baaaaaaaaaack! I missed you all during my summer break, but I am back at it and super excited to share this episode with you! I'm kicking off the end-of-summer with a wonderful and insightful conversation with rare dad & founder of the incredible mejo App! (If you have a rare or medically complex kiddo, trust me, this app will change your world). After Ryan's son Reynolds was diagnosed with Costello syndrome at 19 months, he and his wife, Ashley, saw a desperate need for a better way to simplify, organize, and share c...
2022-09-0652 minConfessions of a Rare Disease Mama*BONUS EPISODE* How to deal with ignorant commentsSend us a textWelcome to this special BONUS episode!I recently had an experience with an ignorant comment on social media that I felt like I just had to share. I hope you all enjoy this special bonus episode (there may be a couple more short, bonus episodes before we return fully in August, so stay tuned)!Watch the surprise video of my mom that went viral HERE (since I recorded this episode, the video is now at 14.4 MILLION views and was featured on the Today Show's Instagram)!https://www...
2022-08-0318 minConfessions of a Rare Disease MamaWe made it to the double digits! Life update + Special AnnouncementSend us a textThanks for tuning in to our 10th episode- we finally made it to the double digits! Confessions of a Rare Disease Mama will be taking a "summer break" for a few weeks and returning in August with some bad ass guests! Stay tuned.If you are loving this podcast and feel called to do so, please scroll down and rate/review us! https://www.confessionsofararediseasemama.com/Have an idea for an episode or a guest in mind that you think I would love to talk...
2022-07-2219 minConfessions of a Rare Disease MamaLife Update/Stream of consciousnessSend us a textThis has been a wild week! Surprise party, car accident (don't worry- we are all okay!), tornadoes, basement flooding, etc. I contemplated skipping doing an episode this week since I have barely had time to sit down and collect my thoughts, but I hate to leave you all hanging for a week :) This episode is just a life update on our crazy week/stream of consciousness. I also included an exciting update on where we are at in terms of starting the kid's on their second experimental treatment. We are getting CLOSE!
2022-07-1230 minConfessions of a Rare Disease MamaThe 5 minute journaling techniques I use to help declutter my brainSend us a textThis episode I talk about three of the 5 minute journaling techniques I do to help "declutter my brain" when I'm feeling overwhelmed and stressed. I challenge you all to try one and let me know how you feel afterwards!1. Brain Dump2. Gratitude Rampage3. Fear Burn Thanks for listening! Please share this episode with any friends and family that you think may benefit from listening and don't forget to subscribe, rate, and review if you are enjoying this podcast!Visit my website: https://www.confessionsofararediseasemama.com/
2022-07-0522 minConfessions of a Rare Disease MamaHow to (kindly) cut ties with a therapist or doctor who is no longer serving your child in the way they needSend us a textThis week I talk about the importance of not settling when it comes to putting your child's perfect care team together and how to (kindly) cut ties with a therapist or doctor who is no longer serving or supporting your child in the way they need.Bottom line: NEVER feel guilty about wanting to explore other options until you get the right fit for your child.If you are enjoying listening, please don't forget to subscribe and rate/review us in Apple Podcasts!Website: https://www.confessionsofararediseasemama...
2022-06-2829 minConfessions of a Rare Disease MamaHow to (kindly) cut ties with a therapist or doctor who is no longer serving your child in the way they needThis episode I talk about the importance of not settling when it comes to putting your child's perfect care team together and how to (kindly) cut ties with a therapist or doctor who is no longer serving or supporting your child in the way they need. Bottom line: NEVER feel guilty about wanting to explore other options until you get the right fit for your child.If you are enjoying listening, please don't forget to subscribe and rate/review us in Apple Podcasts!Website: https://www.confessionsofararediseasemama.com/Follow on instagram: https://w...
2022-06-2729 minConfessions of a Rare Disease MamaHow to make connections and utilize all your resources as a rare disease parentSend us a textThis week I discuss how to make connections and utilize every resource available to you as a rare disease parent (and there are many!) to help your children thrive. A must listen for any parents at the start of a new diagnosis not knowing where to turn first.https://www.sanofi.com/en/media-room/press-releases/2022/2022-02-09-17-00-00-2382138https://wyldernation.org/resources/https://rarediseases.org/https://nnpdf.org/Resources & Links for this episode:
2022-06-2030 minConfessions of a Rare Disease MamaFather's Day Episode with extra special guest: my husband (AKA: Dadvocate-EXTRAORDINAIRE)Send us a textWe don't hear from dads enough. So in honor of Father's Day coming up, I had my better half and Dadvocate-extraordinaire on this week as my very first guest. Donald talks all about the struggle of finding the balance being the sole provider for our family and working full time outside of the home at a demanding job while still finding ways to continue to woo me and be a completely present and doting Dad. He also offers advice to fellow special needs Father's who may be just starting out on their journey...
2022-06-1437 minConfessions of a Rare Disease MamaHow to continue to nurture your relationship with your spouse as a special needs parentSend us a textI'm not going to lie- I never, ever thought that my husband and I would EVER end up in therapy together. But then again I also never, ever thought that we would be the parents of two children living with an ultra rare genetic disease too. Life throws you curve balls. Shit happens. Marriage isn't always easy. This episode I get candid about some of the issues Donald and I faced as a couple going through some very trying times with our kid's health and how we ultimately learned just how important it...
2022-06-0628 minConfessions of a Rare Disease MamaTrusting your "parental instincts"Send us a textWelcome back for the second episode of Confessions of a Rare Disease Mama!This week I wanted to dive a little deeper into our treatment journey for our kids, the importance of following our "parental instincts," and how all of us mom's have a secret power deep within to GET. SHIT. DONE. Even when the odd's are stacked against us. Links for today's episode:Learn more about our children's journey with ASMD and fundraising efforts: https://www.saveromanandstella.com/Learn more about Wylder Nation Foundation: h...
2022-05-3033 minConfessions of a Rare Disease MamaThe post-holiday funkSend us a textI always tend to get into a weird funk/depression immediately following any major holidays or celebrations. Easter was no exception this year. The older my kids get, the more I am reminded that our holidays will look much different than we had always imagined them. This episode I share the tactic I have used to help combat those feelings and not let them get in the way of enjoying these special moments with my children and making happy memories each holiday. Please don't forget to leave a review if you...
2022-05-3033 minConfessions of a Rare Disease MamaOur diagnosis journeySend us a textWelcome to my very first episode! Everyone in this wild world of rare disease has a diagnosis story and this is ours. Learn more about my children's fight for their lives: http://www.saveromanandstella.comhttp://confessionsofararediseasemama.comResources & Links for this episode: Buy Soaring Together: Amazon, Barnes & Noble, or locally at Bike Trail Books in Loveland and the Cincinnati Zoo Gift Shop Learn more about our brave warriors: saveromanandstella.com Support our family: GoFundMe Follow us! Instagram: @confessionsofararediseasemama TikTok: @rare_mama Facebook: Jillian...
2022-05-1929 min
How Do You Want To Be Seen?"I See Myself Being Here For You." Jillian Miner Wellness"No one is useless in this world who lightens the burdens of another.”
Charles Dickens
We live in a world that creates burdens, burdens that are often just too heavy to bear on our own. As the stresses of life mount we often find ourselves making less-than stellar food choices. Some do their best but still feel stuck. It can be a lot, dealing with life when you're feeling unwell.
My guest today is Jillian Miner of Jillian Miner Wellness. In an area full of holistic practitioners, nutritionists, fitness instructors, there are many choices to hone in on your well being. Jillian offers an exceptional product to help you know where to start. Enjoy my con...
2020-05-1136 min
Why Watch That RadioMovie Talk: The Last Black Man in San Francisco and Late NightThe Last Black Man in San FranciscoJimmie and his best friend Mont try to reclaim the house built by Jimmie's grandfather, launching them on a poignant odyssey that connects them to their past, even as it tests their friendship and sense of belonging in the place they call home.Director: Joe TalbotProduced by: Brad Pitt, Dede Gardner, Jeremy Kleiner, Joe Talbot, Christina Oh, Khaliah NealCast: Jimmie Fails, Jonathan Majors, Danny Glover, Tichina Arnold, Rob Morgan, Mike Epps, Finn Wittrock, Thora BirchDistributor: A24Release...
2019-06-0414 min
The Blogger Genius PodcastHow Social Media Can Build Your Business with Coley Arnold & Lindsey HoltWelcome to episode 54 of The Blogger Genius Podcast. Today I'm talking with Coley Arnold and Lindsey Holt, founders of Junk in the Trunk Vintage Market. We talk about how social media can build your business. Coley and Lindsey, both vintage collectors, stumbled into starting a vintage market event business, and built it with social media, word of mouth, and a lot of guts! We talk about how they got started, what it's like working as a team, how important Instagram has been for them, and why they built a supportive community of like-minded female entrepreneurs.
2019-02-0652 min
Morning Sunshine with Jillian BolanzEpisode 124: TAMARA ARNOLD AND OWNING YOUR INTUITIVE GIFTSTamara is able to tap into the energy of others and read their chakras. She also explained the different types of gifts we may all experience as humans in our own individual connection. We wrapped up by getting a true lesson about the chakras from what was given to Tamara- and it was AMAZING.
2018-12-0600 min
SISTERHOOD OF SWEAT - Motivation, Inspiration, Health, Wealth, Fitness, Authenticity, Confidence and EmpowermentObi Obadike Celebrity Fitness and Tiaja Pierre - Making Your New Years Resolutions StickObi Obadike is a Telly award winning TV host who has authored more than 100 articles for fitness magazines and fitness sites. He is a best-selling author of the diet and exercise book TheCut in which he co-authored with Hollywood Actor Morris Chestnut that came out April of 2017. He has been a guest as an author and expert on national daytime talk shows such as Wendy Williams, Steve Harvey, Dr Oz, Rachael Ray, Access Hollywood, Home & Family, The Today Show, Roland Martin's News One Show, etc. and many national syndicated radio shows. He was a featured fitness contributor on a summer-weight...
2018-02-0259 min
SISTERHOOD OF SWEAT - Motivation, Inspiration, Health, Wealth, Fitness, Authenticity, Confidence and EmpowermentObi Obadike Celebrity Fitness and Tiaja Pierre - Making Your New Years Resolutions Stick Obi Obadike is a Telly award winning TV host who has authored more than 100 articles for fitness magazines and fitness sites. He is a best-selling author of the diet and exercise book TheCut in which he co-authored with Hollywood Actor Morris Chestnut that came out April of 2017. He has been a guest as an author and expert on national daytime talk shows such as Wendy Williams, Steve Harvey, Dr Oz, Rachael Ray, Access Hollywood, Home & Family, The Today Show, Roland Martin's News One Show, etc. and many national syndicated radio shows. He was a featured fitness contributor on...
2018-01-2959 min
Family Law TalkOut-of-wedlock birth rate causing spike in paternity casesKirk Stange and Jillian Wood discuss the rising out-of-wedlock birth rate causing a spike in the filing of paternity cases. This is based on an article at www.familylawheadquarters.com. With offices in St. Louis, St. Charles, Jefferson County (Arnold), Franklin County (Union) in Missouri and St. Clair County (Belleville) and Madison County (Edwardsville) in Illinois, you can call Stange Law Firm at 314-963-4700 or contact us at St. Louis Paternity and DNA Test Attorneys.
Find out more related topics on the St. Charles Divorce Attorneys Blog.
2013-09-2418 min