What might you do if you had symptoms of a chronic condition at the tender age of 15 and diagnosed at 18? Well, our guest for this episode, Effie, turned her fight with juvenile arthritis into a platform for advocacy. Rising Above RA, as she is known in the digital world, sheds light on her journey from grappling with the emotional fallout of her diagnosis to finding her equilibrium. Join us as she opens up about her high school years wrapped in pain, her journey of managing imbalances within her body, and the catharsis of writing.

Imagine having a specially curated 'Spoonie  Toolkit' - what would you put in it? As we chat with Effie, not only do we explore this idea, but we also dive into the realm of personalized treatment plans. We delve into the importance of self-care while juggling chronic conditions and the role of writing in Effie's RA journey. We share some of our favorite book recommendations and ponder on how positivity can manifest differently for each individual.

In the world of chronic illness, inspiration and support are vital. But how do you balance encouragement with sensitivity? How do you access reliable information while avoiding information overload? As our conversation with Effie continues, we emphasize the importance of following organizations that provide reliable resources. We also discuss the value of a robust support system and the challenge of finding a healthcare provider that truly resonates with your personal journey—strap in as we navigate through the highs and lows of living with arthritis.

https://linktr.ee/effiekoliopoulos?fbclid=PAAaYLMG9-Ch1N_dwqJ8j3yJ3LB5oCl5Kl876LCN2CR-_BX0Rqu5WJLBU5g7Q_aem_AWecvW_yL-iGCAPPXnHJnTAd89bHmypDpqz6XeGyLSJCZECZM-rxILkKC-b4gPuRZ-A

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Welcome to Behind the Smile with Cheryl Crow!

Have you ever wondered how someone manages a bustling online presence while battling a chronic condition? Picture this: Cheryl Crow, a woman leading an active lifestyle, starts experiencing an array of symptoms that eventually lead her to a Rheumatoid Arthritis diagnosis at age 21. Once a vibrant athlete, she noticed her weight drop, leading to her life-altering diagnosis.

Join us as we traverse Cheryl's journey managing her condition and online business, Arthritis Life. We delve deep into Cheryl's revolutionary 'Room to Thrive' framework. It's an approach to wellness inspired by occupational therapy and lifestyle medicine, where lifestyle factors like exercise, sleep, nutrition, stress management, and mental health walk hand in hand with medication. We also discuss social media's crucial role in connecting with others dealing with chronic conditions and the need for responsible online research.

The episode culminates with Cheryl recounting the tough times when her medication ceased working, leading her to accept her new reality. We explore the importance of therapy and technology in managing Arthritis and how Cheryl's 'Rheumm to Thrive,' framework can be invaluable for others in a similar situation. From the seriousness of the chronic illness, we switch gears to a light-hearted debate on the perfect family vacation spot - Maui, Kauai, or the chronic pain-friendly Oahu. So, lend your ears as we navigate through this enlightening journey of resilience, holistic wellness, and the power of embracing a mindfulness-based approach.

https://www.instagram.com/arthritis_life_cheryl/
https://thoughtful-experimenter-636.ck.page/1fb879479c

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🎙 Living with a rare disease or chronic illness can feel isolating—but you are not alone. Find Your Rare is more than just a brand—it’s a movement. From empowering apparel to real, raw conversations, they’re here to remind you that your story matters. Because being RARE its your superpower. Explore, join & wear your rare with pride at FindYourRare.com

🎙 "Ever wanted to hug your autoimmune disease? Okay, maybe not—but with Giant Microbes, you totally can! These adorable microbes turn science into snuggles, featuring fun and educational designs of bacteria, viruses, and yes—even immune cells! They’re perfect for spoonies, medical professionals, or anyone who loves a quirky, cuddly take on health. Check out GiantMicrobes.com and find your new favorite pal today!"

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What does it mean to be a warrior? Today, I'm joined by Makenzie, a 22-year-old nursing student who embodies this term like no other. Battling Juvenile Idiopathic Arthritis since age 13, Makenzie navigates the daily struggles of her own disease while also being a champion for her son Josiah, who has Familial Cold Autoinflammatory Syndrome, and her mother, who is fighting Lupus and Rheumatoid Arthritis. She offers a candid insight into the complexities of their journeys, from the agonizing search for a diagnosis to the treatments they undergo.

Have you ever felt unheard or misunderstood in a doctor's office? Makenzie knows this feeling all too well, and she's here to emphasize the importance of standing up for yourself and your loved ones. She shares her thoughts on advocating for early detection tests for autoimmune and autoinflammatory markers at birth - a simple measure that she believes could spare others from undue suffering. 

Lastly, let's delve into Makenzie's resilience kit, her 'Spoonie Toolkit,' and how she maintains a positive outlook despite the trials she faces. We touch on the reality of parenting children with special needs, the invaluable importance of support, and maintaining a good attitude, no matter what. Whether you're personally affected by chronic illness or not, this conversation with Makenzie is sure to inspire and motivate you to face life's battles with grit and grace.

https://www.gofundme.com/f/cabrera-family-medical-funds?utm_campaign=p_cp+share-sheet&utm_medium=copy_link_all&utm_source=customer
https://linktr.ee/makenziecabrera

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Are you living with a chronic illness and want to make your voice heard? Rare Patient Voice connects patients and caregivers with research opportunities—so you can share your experiences and get paid for your time! Your insights help drive real change in healthcare.

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Are you caught in the crossfire of chronic illness in the Spoonie community? Feel like your healthcare provider is gaslighting you? Hear from Stefanie,  the rheumatoid arthritis coach, who opens up about her own experiences with medical gaslighting as a patient and a family nurse practitioner. She pulls back the curtain on this hot topic, discussing what gaslighting entails in the healthcare sector. She equips us with effective communication strategies to foster a healthier dialogue with our medical providers.

The conversation takes a deep dive, discussing the red flags that come with medical gaslighting based on Stefanie's personal experiences. Jen shares a rather chilling encounter of being prescribed a medication that led to a seizure and her rheumatologist's shocking response. This segment underscores the need for open, honest discussions with healthcare providers, the importance of second opinions, and the role of shared decision-making in healthcare. Stefanie leaves us with practical tips to prepare for an appointment and the difference between gaslighting and medical professional exhausting all options.

Stefanie doesn't stop there; she shares her experiences with healthcare challenges and how she navigated the hurdles. She advocates for asking the right questions and emphasizes the importance of being kind to yourself when dealing with a chronic illness. And finally, we get a sneak peek into Stefanie's world as a rheumatoid arthritis coach, where she teaches clients to live their best life despite their condition. You'll hear about her six-month program designed to equip clients with the tools they need to navigate their health journey. So buckle up and prepare for a riveting conversation brimming with indispensable insights and practical advice.

https://www.instagram.com/rheumatoidarthritiscoach/
https://linktr.ee/rheumatoidarthritiscoach

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Are you living with a chronic illness and want to make your voice heard? Rare Patient Voice connects patients and caregivers with research opportunities—so you can share your experiences and get paid for your time! Your insights help drive real change in healthcare.

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🎙 Living with a rare disease or chronic illness can feel isolating—but you are not alone. Find Your Rare is more than just a brand—it’s a movement. From empowering apparel to real, raw conversations, they’re here to remind you that your story matters. Because being RARE its your superpower. Explore, join & wear your rare with pride at FindYourRare.com

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Hello, my spoonie sisters! Ready to move and groove with a twist? Join me and my dear friend Dani from Make It Count 4 Dani as we embark on the July Encouragement Challenge, a fun-filled initiative designed not to push you to the brink but to inspire and empower you to move in ways that suit you best. Regardless of what your movement looks like, be it an intense workout or a leisurely stroll to the mailbox, we want to see it as you share your journey using the hashtag #IChooseMovement on Instagram. And guess what? Every time you participate, you stand a chance to win some cool stickers and even a brand-new pair of shoes courtesy of Dani!

Let's get back to me for a moment, shall we? Just as I was gearing up with high spirits for the challenge, life threw a curveball my way in the form of a minor back pain problem after my bike ride. This hiccup reminded me of the importance of listening to my body and resting when needed. So, today, my chosen movement was a careful walk to the mailbox, which in retrospect, was as challenging as it was rewarding. So, get moving at your own pace and share your journey with us. We're more than excited to cheer you on. And remember, every bit counts. Until next time, don't forget your spoon!

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Ever wondered how a life-altering diagnosis can become the birthplace of an inspiring journey? Our guest, Mariah, has transformed her battles with PCOS and IBD into a beacon of hope—finding solace and purpose in fitness, and creating a brand, Invisible Voices, that empowers others in their struggles.

In an intimate conversation, Mariah reveals her struggles and triumphs, from navigating the complexities of her illness, building a supportive community, and managing her health. She talks about her transition to a vegan diet and shares her experiences with the book, Fiber Fueled by Dr. Will Bolschowitz. Mariah’s story is a testament to the power of resilience and optimism in the face of chronic illness.

What's more, we uncover Mariah’s initiatives—the Invisible  Voices, a collective that provides a platform for those living with chronic illnesses. Listen on as we explore the power of self-care, storytelling, and community-building as a tool for managing chronic illness. This episode with Mariah is sure to inspire, inform, and uplift anyone living with chronic illness or those who simply seek to understand the journey better.

https://instagram.com/the.invisible.voices?igshid=Y2I2MzMwZWM3ZA==

https://instagram.com/mariahlamattina?igshid=Y2I2MzMwZWM3ZA==

https://theinvisiblevoices.circle.so/checkout/movement-membership

https://instagram.com/theguthealthmd?igshid=Y2I2MzMwZWM3ZA==

https://instagram.com/kidsgastrodoc?igshid=Y2I2MzMwZWM3ZA==

https://www.amazon.com/Fiber-Fueled-Plant-Based-Optimizing-Microbiome/dp/B087L8X7LV/ref=sr_1_1?crid=25ADRN2HLTJDQ&keywords=fib

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Are you living with a chronic illness and want to make your voice heard? Rare Patient Voice connects patients and caregivers with research opportunities—so you can share your experiences and get paid for your time! Your insights help drive real change in healthcare.

Let's Get Started - Rare Patient Voice

🎙 Living with a rare disease or chronic illness can feel isolating—but you are not alone. Find Your Rare is more than just a brand—it’s a movement. From empowering apparel to real, raw conversations, they’re here to remind you that your story matters. Because being RARE its your superpower. Explore, join & wear your rare with pride at FindYourRare.com

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Support:
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https://www.etsy.com/shop/MySpoonieSisters
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Website:
https://myspooniesisters.com/

Discount Codes:

GIANT Microbes | Gag Gifts, Teacher Gifts, Doctor Gifts, Gifts for Girlfriends and Boyfriends code SPOONIE20 for 20% off

Have you ever felt dismissed or doubted by medical professionals while struggling with a rare and life-altering health condition? Jewel Dukes knows this feeling all too well, and she bravely shares her journey with Cushing's Disease in this powerful episode. Listen in as we discuss her battle with weight gain, depression, and anxiety, as well as her monumental decision to undergo brain surgery to remove the tumor causing her symptoms.

We also explore the invaluable role that community support plays in living with chronic illnesses like Cushing's Disease. From preparing for a colonoscopy to managing physical and emotional symptoms post-procedure, Jewel credits her community and additional medication for helping her stay strong during these challenging times. Learn how important it is to listen to your body and reach out for support when faced with adversity.

Finally, Jewel reveals her personal strategies for coping with the unpredictability of her condition and shares the heartwarming encouragement she receives from her children. You'll also discover valuable advice from both Cushing's and Addison's Disease patients on how to stay resilient in the face of adversity. Don't forget to follow Jewel on Instagram at @thelipedemacushy and on Facebook as Jewel Dupes for more inspiration and support.

https://www.instagram.com/thelipedemacushie/

https://linktr.ee/thelipedemacushie

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Are you living with a chronic illness and want to make your voice heard? Rare Patient Voice connects patients and caregivers with research opportunities—so you can share your experiences and get paid for your time! Your insights help drive real change in healthcare.

Let's Get Started - Rare Patient Voice

🎙 Living with a rare disease or chronic illness can feel isolating—but you are not alone. Find Your Rare is more than just a brand—it’s a movement. From empowering apparel to real, raw conversations, they’re here to remind you that your story matters. Because being RARE its your superpower. Explore, join & wear your rare with pride at FindYourRare.com

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Support:
https://rarepatientvoice.com/Myspooniesisters/
https://www.etsy.com/shop/MySpoonieSisters
https://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen10)

Website:
https://myspooniesisters.com/

Discount Codes:

GIANT Microbes | Gag Gifts, Teacher Gifts, Doctor Gifts, Gifts for Girlfriends and Boyfriends code SPOONIE20 for 20% off

Have you ever felt the gut-wrenching pain of betrayal, whether it be from a friend, a doctor, a family member, or a significant other? What if we told you there are ways to navigate these feelings and come out stronger on the other side? In this heartfelt episode, we are joined by our spoonie sisters, Andi Byers, and Danielle Bryant, to discuss our personal experiences with betrayal and how we've learned to set boundaries for our mental and emotional well-being.

Together, we unpack the intricacies of processing and overcoming betrayal, emphasizing the importance of self-reflection, setting boundaries, and confronting uncomfortable situations. As Spoonies dealing with chronic illness, we delve into the unique challenges of navigating relationships and trust in the face of our health struggles. Please tune in to hear how listening to our intuition and retraining our brains can lead to healing and thriving.

We also touch on the significance of discernment in relationships, especially with the prevalence of opportunism and unhealthy dynamics. Learn from our experiences in managing expectations with clients and navigating the nonprofit world while staying true to ourselves and our values. Join us in this empowering conversation as we share our hard-won lessons in healing hearts and gracefully handling betrayal.

https://www.instagram.com/chronicallyiconiccoach/

https://www.instagram.com/makeitcount4dani/

https://www.instagram.com/gracefully_jen/

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Are you living with a chronic illness and want to make your voice heard? Rare Patient Voice connects patients and caregivers with research opportunities—so you can share your experiences and get paid for your time! Your insights help drive real change in healthcare.

Let's Get Started - Rare Patient Voice

🎙 Living with a rare disease or chronic illness can feel isolating—but you are not alone. Find Your Rare is more than just a brand—it’s a movement. From empowering apparel to real, raw conversations, they’re here to remind you that your story matters. Because being RARE its your superpower. Explore, join & wear your rare with pride at FindYourRare.com

🎙 "Ever wanted to hug your autoimmune disease? Okay, maybe not—but with Giant Microbes, you totally can! These adorable microbes turn science into snuggles, featuring fun and educational designs of bacteria, viruses, and yes—even immune cells! They’re perfect for spoonies, medical professionals, or anyone who loves a quirky, cuddly take on health. Check out GiantMicrobes.com and find your new favorite pal today!"

Use code SPOONIE20 at checkout for 20% off!

Support the show

Support:
https://rarepatientvoice.com/Myspooniesisters/
https://www.etsy.com/shop/MySpoonieSisters
https://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen10)

Website:
https://myspooniesisters.com/

Discount Codes:

GIANT Microbes | Gag Gifts, Teacher Gifts, Doctor Gifts, Gifts for Girlfriends and Boyfriends code SPOONIE20 for 20% off

Imagine living with a chronic illness that affects your ability to eat and enjoy food. Holly, the host of 'The Cook Who Can't Eat' podcast, knows this all too well as she shares her journey navigating gastroparesis and paralysis of her intestines. Despite her health challenges, Holly remains positive and inspiring to others facing similar struggles.

Join us as we explore Holly's life in a blended family, discussing the legal and practical implications of parenting teens and young adults. Holly also shares her essential Spoonie toolkit, filled with tools and resources that help her manage her chronic illness and disability. From a drafting chair with wheels for cooking to a catch-all bag for bedside items, Holly emphasizes the importance of self-compassion and finding support to make living with a chronic illness a little bit easier.

Don't miss this episode with Holly as she opens up about the loneliness and difficulty of living with a chronic illness. Her strength and resilience are truly inspiring, and her story serves as a reminder that there are people out there who can provide support and understanding. Tune in to this heartfelt conversation and discover how Holly's journey can offer hope and encouragement to those facing their own health challenges.

https://www.instagram.com/wellblendedlife/

https://www.instagram.com/thecookwhocanteat/

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Podcast on Apple: https://podcasts.apple.com/us/podcast/the-cook-who-cant-eat/id1673591335

Website: https://www.wellblendedlife.com

Resource Guide:
https://bit.ly/41qs96h

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Are you living with a chronic illness and want to make your voice heard? Rare Patient Voice connects patients and caregivers with research opportunities—so you can share your experiences and get paid for your time! Your insights help drive real change in healthcare.

Let's Get Started - Rare Patient Voice

🎙 Living with a rare disease or chronic illness can feel isolating—but you are not alone. Find Your Rare is more than just a brand—it’s a movement. From empowering apparel to real, raw conversations, they’re here to remind you that your story matters. Because being RARE its your superpower. Explore, join & wear your rare with pride at FindYourRare.com

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Support:
https://rarepatientvoice.com/Myspooniesisters/
https://www.etsy.com/shop/MySpoonieSisters
https://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen10)

Website:
https://myspooniesisters.com/

Discount Codes:

GIANT Microbes | Gag Gifts, Teacher Gifts, Doctor Gifts, Gifts for Girlfriends and Boyfriends code SPOONIE20 for 20% off

Have you ever wondered about the mysterious world of autoimmune diseases? This episode is your ultimate guide to understanding some of the most common autoimmune conditions, such as lupus, Hashimoto's disease, rheumatoid arthritis, multiple sclerosis, psoriasis, and celiac disease. Listen in as we explore information and symptoms of each disease, arming you with valuable knowledge to better understand these challenging conditions.

Get ready to learn about the various types of psoriasis, including plaque, nail, guttate, inverse, erythrodermic, and lesser-known pustular arthritis. Plus, we'll shed light on celiac disease – an autoimmune reaction to gluten that affects 1 in 133 Americans. By the end of this episode, you'll be well-informed about these prevalent autoimmune diseases and gain a deeper appreciation of their impact on the lives of those affected. Don't miss this insightful and informative episode covering information with Dr. Google!

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Support:
https://rarepatientvoice.com/Myspooniesisters/
https://www.etsy.com/shop/MySpoonieSisters
https://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen10)

Website:
https://myspooniesisters.com/

Discount Codes:

GIANT Microbes | Gag Gifts, Teacher Gifts, Doctor Gifts, Gifts for Girlfriends and Boyfriends code SPOONIE20 for 20% off