My Spoonie Sisters

How does it feel to live with chronic illnesses? To manage the pain and the everyday tasks while dealing with the physical, emotional, and mental impacts? It's a journey that our guest, Jacinda, also known as Virgo Beauty, knows all too well. Diagnosed with juvenile rheumatoid arthritis at a tender age of five, life threw a curveball at her in 2016 when she experienced a severe flare-up that left her bedridden. Today, she lives with RA and the rare Stills disease, navigating the labyrinth of chronic illnesses with courage and resilience.

We follow Jacinda's arduous journey, immersing ourselves in her daily battles and victories. She unravels her health regimen - balancing medications, lifestyle changes, and the endless search for the right doctor. She opens her Spoonie toolkit for us, revealing the little aids that help her navigate her day - hand sanitizers, ginger candies for motion sickness, and more. But it's not just about the physical battle; Jacinda's story is also about the mental and emotional warfare of living with a chronic illness. 

In our candid conversation, Jacinda speaks of her support system's crucial role in managing her mental health. She shares her daily affirmations and meditation rituals that keep her spirits high. We delve into the essence of authenticity and vulnerability in managing chronic illnesses, discussing how important it is to stay true to oneself while battling such conditions. Join us on this journey of strength, resilience, and hope as we delve into the world of chronic illnesses with Jacinda.

https://instagram.com/virgobeautyxo?igshid=MzRlODBiNWFlZA==

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We have sent thousands of cards to isolated illness warriors, facilitated hundreds of pen pal relationships, and reached countless family members, caregivers, and medical professionals with messages of hope and acknowledgment.

Join our mission to send 100,000 cards of support to patients with long-term illnesses.

About our organization | Cards2warriors

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• https://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen20)
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Website:

• https://myspooniesisters.com/

Discover how to embrace your unique identity and build a successful personal brand in our heartfelt conversation with Neeti, a coach and healer from Mumbai, India. Get ready to feel seen, celebrated, and whole as Neeti shares her transformative journey of dealing with adversity and her mission to empower women. From discussing challenges faced in her health journey to the ins and outs of her treatment care plan, Needy's insights and advice are simply invaluable.

This episode goes beyond your typical interview. It's a testament to resilience and a reaffirmation that you are welcome in this world exactly as you are. Neeti doesn't shy away from recounting her experiences with gaslighting and battling health issues. Her candidness is as refreshing as it is inspiring. And if that's not enough, she also shares her recommended resources and her reflections on her journey. By the end of our conversation, you might find yourself re-evaluating your journey and story. So, tune in because this is one discussion you won't want to miss.

https://www.instagram.com/neetisavla/

Send us Fan Mail

Delivering Happy Mail around the world!

We have sent thousands of cards to isolated illness warriors, facilitated hundreds of pen pal relationships, and reached countless family members, caregivers, and medical professionals with messages of hope and acknowledgment.

Join our mission to send 100,000 cards of support to patients with long-term illnesses.

About our organization | Cards2warriors

Keep your spoons close and support system closer.

Support the show

Discount Codes:

• https://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen20)
• GIANT Microbes | Gag Gifts, Teacher Gifts, Doctor Gifts, Gifts for Girlfriends and Boyfriends code SPOONIE20 for 20% off

Website:

• https://myspooniesisters.com/

Ever dreamed of embarking on a grand adventure but felt tethered down by the struggles of a chronic illness? This episode unfolds the inspiring journey of our brave friend, Angelic, who defied the odds and flew the globe from San Francisco to London with a painful chronic illness.

Angelic paints a vivid image of her thrilling escapade and gives the listeners a front-row seat to her experiences. From a grueling 10-and-a-half-hour flight to her unplanned detour to Lisbon, Portugal, Angelic proved that a chronic disorder should never be a barrier to fulfilling your wanderlust. She lets us in on her go-to tips for keeping comfortable and rested during long flights and her must-haves that combat jet lag. As the conversation sails forward, we shift our compass towards mindful travel. We chat about our personal experiences, like my recording sessions for the Our Serendipity app and Angelic's immersive cultural experience in Portugal. You'll hear us stress the importance of embracing the beauty of simplicity, appreciating life's small wonders, and finding freedom in letting go of what's unnecessary. Get ready to navigate the globe with Angelic's vital tips, and let her be your guide in making your travel dreams come true, chronic illness notwithstanding.

https://linktr.ee/angelicingram

Send us Fan Mail

Delivering Happy Mail around the world!

We have sent thousands of cards to isolated illness warriors, facilitated hundreds of pen pal relationships, and reached countless family members, caregivers, and medical professionals with messages of hope and acknowledgment.

Join our mission to send 100,000 cards of support to patients with long-term illnesses.

About our organization | Cards2warriors

Keep your spoons close and support system closer.

Support the show

Discount Codes:

• https://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen20)
• GIANT Microbes | Gag Gifts, Teacher Gifts, Doctor Gifts, Gifts for Girlfriends and Boyfriends code SPOONIE20 for 20% off

Website:

• https://myspooniesisters.com/

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

Send us Fan Mail

Delivering Happy Mail around the world!

We have sent thousands of cards to isolated illness warriors, facilitated hundreds of pen pal relationships, and reached countless family members, caregivers, and medical professionals with messages of hope and acknowledgment.

Join our mission to send 100,000 cards of support to patients with long-term illnesses.

About our organization | Cards2warriors

Keep your spoons close and support system closer.

Support the show

Discount Codes:

• https://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen20)
• GIANT Microbes | Gag Gifts, Teacher Gifts, Doctor Gifts, Gifts for Girlfriends and Boyfriends code SPOONIE20 for 20% off

Website:

• https://myspooniesisters.com/

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

Send us Fan Mail

Delivering Happy Mail around the world!

We have sent thousands of cards to isolated illness warriors, facilitated hundreds of pen pal relationships, and reached countless family members, caregivers, and medical professionals with messages of hope and acknowledgment.

Join our mission to send 100,000 cards of support to patients with long-term illnesses.

About our organization | Cards2warriors

Keep your spoons close and support system closer.

Support the show

Discount Codes:

• https://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen20)
• GIANT Microbes | Gag Gifts, Teacher Gifts, Doctor Gifts, Gifts for Girlfriends and Boyfriends code SPOONIE20 for 20% off

Website:

• https://myspooniesisters.com/

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

Send us Fan Mail

Delivering Happy Mail around the world!

We have sent thousands of cards to isolated illness warriors, facilitated hundreds of pen pal relationships, and reached countless family members, caregivers, and medical professionals with messages of hope and acknowledgment.

Join our mission to send 100,000 cards of support to patients with long-term illnesses.

About our organization | Cards2warriors

Keep your spoons close and support system closer.

Support the show

Discount Codes:

• https://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen20)
• GIANT Microbes | Gag Gifts, Teacher Gifts, Doctor Gifts, Gifts for Girlfriends and Boyfriends code SPOONIE20 for 20% off

Website:

• https://myspooniesisters.com/

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

Send us Fan Mail

Delivering Happy Mail around the world!

We have sent thousands of cards to isolated illness warriors, facilitated hundreds of pen pal relationships, and reached countless family members, caregivers, and medical professionals with messages of hope and acknowledgment.

Join our mission to send 100,000 cards of support to patients with long-term illnesses.

About our organization | Cards2warriors

Keep your spoons close and support system closer.

Support the show

Discount Codes:

• https://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen20)
• GIANT Microbes | Gag Gifts, Teacher Gifts, Doctor Gifts, Gifts for Girlfriends and Boyfriends code SPOONIE20 for 20% off

Website:

• https://myspooniesisters.com/

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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Keep your spoons close and support system closer.

Support the show

Discount Codes:

• https://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen20)
• GIANT Microbes | Gag Gifts, Teacher Gifts, Doctor Gifts, Gifts for Girlfriends and Boyfriends code SPOONIE20 for 20% off

Website:

• https://myspooniesisters.com/

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=fiber+fueled+by+dr.+will+bulsiewicz&qid=1688356284&sprefix=fiber+fuele%252Caps%252C218&sr=8-1&_encoding=UTF8&tag=invisiblevoic-20&linkCode=ur2&linkId=f4c6b4fd9ec1619da13460e1561a4013&camp=1789&creative=9325

https://www.amazon.com/Mastering-Diabetes-audiobook/dp/B082J8L74Z/ref=sr_1_1?crid=3HK1LFHODKSE6&&keywords=mastering+diabetes&&qid=1688356465&&s=audible&&sprefix=mastering+diabetes%252Caudible%252C232&&sr=1-1&_encoding=UTF8&tag=invisiblevoic-20&linkCode=ur2&linkId=fe157740207f68cde58552932676aa40&camp=1789&creative=9325

Send us Fan Mail

Delivering Happy Mail around the world!

We have sent thousands of cards to isolated illness warriors, facilitated hundreds of pen pal relationships, and reached countless family members, caregivers, and medical professionals with messages of hope and acknowledgment.

Join our mission to send 100,000 cards of support to patients with long-term illnesses.

About our organization | Cards2warriors

Keep your spoons close and support system closer.

Support the show

Discount Codes:

• https://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen20)
• GIANT Microbes | Gag Gifts, Teacher Gifts, Doctor Gifts, Gifts for Girlfriends and Boyfriends code SPOONIE20 for 20% off

Website:

• https://myspooniesisters.com/

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

Send us Fan Mail

Delivering Happy Mail around the world!

We have sent thousands of cards to isolated illness warriors, facilitated hundreds of pen pal relationships, and reached countless family members, caregivers, and medical professionals with messages of hope and acknowledgment.

Join our mission to send 100,000 cards of support to patients with long-term illnesses.

About our organization | Cards2warriors

Keep your spoons close and support system closer.

Support the show

Discount Codes:

• https://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen20)
• GIANT Microbes | Gag Gifts, Teacher Gifts, Doctor Gifts, Gifts for Girlfriends and Boyfriends code SPOONIE20 for 20% off

Website:

• https://myspooniesisters.com/