Are you aware of how much power you hold in managing your Rheumatoid Arthritis? Understanding your condition, being knowledgeable about treatment options, and maintaining a robust support system can significantly impact your health journey. In our conversation today, we share our personal experiences and mention Stefanie, the Rheumatoid Arthritis Coach, and Dani from Make It Count for Dani. These wonderful individuals have helped us understand our condition better and have shown us the importance of connection and emotional support in managing Rheumatoid arthritis.

Living with a chronic illness is not easy, but prioritizing self-care can help. We'll explore techniques to adapt your movements, discuss the impact of stress on your body, and share flare-friendly exercises. We will also introduce you to the Serendipity app, a tool that offers recipes, a chat community, and more. Did you know affirmations could aid in self-care? We'll discuss the impressive benefits of stacking affirmations and how you can incorporate this into your daily routine. 

Having an open line of communication with your healthcare provider is vital to managing Rheumatoid Arthritis effectively. We'll shed light on how to express your needs, ask the right questions, and prioritize your care. Moreover, we delve into the importance of using online charts and share tips on how to communicate effectively with your healthcare provider. Lastly, we provide five essential tips to manage Rheumatoid Arthritis and stress, drawing from our personal experiences and what has worked well for us. Join us on this enlightening journey and empower yourself to take charge of your health.

https://www.instagram.com/makeitcount4dani/#
https://www.instagram.com/rheumatoidarthritiscoach/#
https://www.instagram.com/gracefully_jen/#
https://www.instagram.com/perfectlyimperfectlinnea/#
https://www.instagram.com/ourserendipity.app/#
https://www.instagram.com/wearebewell/#

Send us a text

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

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 the strength it takes to not only battle multiple autoimmune conditions but to also travel across 40 countries seeking knowledge from experts and scientists. That’s exactly what Sweta did. Born with epilepsy, and later diagnosed with rare autoimmune hemolytic anemia, lupus, IVSC, Hashimoto's, and alopecia, she was determined to learn how to manage her symptoms and prevent other autoimmune conditions from developing. Her resilience and relentless pursuit of health led her to establish Healveda Health, providing others with the tools to overcome their conditions.

Sweta's story is one of victory over adversity. In this conversation, she reveals her 'Spoonie Toolkit,' a treasure trove of her top five must-haves for dealing with an autoimmune condition. You'll learn about the mindset changes and lifestyle alterations Sweta believes are key to maintaining a positive outlook amidst health challenges. She also discusses the 'Make Me Visible' campaign by Healveda Health, a movement that focuses on making visible the struggles of those with autoimmune conditions. Whether you are fighting an autoimmune condition yourself or know someone who is, this episode is filled with invaluable insights, inspiration, and practical advice. Join us as we unravel Sweta's inspiring journey and learn how to manage autoimmune conditions effectively.

https://healveda.health/make-me-visible/

Send us a text

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

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

Ready to shake off the chill of November and get your blood pumping? Join me, your host Gracefully Jen, and my dear friend Dani from Make it Count 4 Dani, as we ignite the spark of "Move-Ember," a call to action for at least 20 minutes of deliberate, focused movement every day this month. This isn't a grueling challenge; it's a beacon towards a healthier, more energized lifestyle. Whether it's a brisk walk, yoga, or even a Zumba class, the choice is yours.

But there's more! Along with the benefits of self-love and a healthier lifestyle, we're also giving back to you fantastic giveaways in the first week of December from some truly incredible companies. To stand a chance of winning, it's as simple as sharing your progress with us each day, no social media expertise is required! So, my Spoonie Sisters, brace the cold, choose yourself, get moving, and let's make this the best "Move-Ember" yet! Remember, it's all about making it count 4 Dani!

https://www.instagram.com/makeitcount4dani/#
https://linktr.ee/makeitcount4dani

Send us a text

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

Are you ready to decode the enigma of 'Spoon Theory'? Let's embark on a journey together, unraveling this metaphorical term coined by the notable blogger, Christine Mizerendino. We'll leverage the concept of spoons as units of daily energy, revealing the victories and challenges inherent in life with chronic illnesses or disabilities. Prepare to discover 15 signs that resonate with the 'Spoonie' life, from systematically designed daily routines to the comfort found in the empathetic companionship of fellow Spoonies.

Feeling alone in your battle? Here's a promise - you are not! The wonderful world of social media abounds with expansive communities brimming with support and understanding. Simply look up hashtags like #Spoonies, #SpoonieCommunities, and #SpoonieSupport, and you'll find a universe of resources. From Rare, Patient Voice, Reactive Rehab, and countless more, you'll never be short of encouragement. We're rooting for you, and eager to accompany you along this journey. So, why wait? Come, share your story, and remember, never forget your spoon!

https://myspooniesisters.chewack.com/

Send us a text

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

I've been marveling at the strength of Suzy, a remarkable polymyositis patient, who held her ground at work for 15 years even while battling progressive muscle loss, fatigue, and overwhelming stress. It wasn't until she finally opened up about her chronic illness and embraced support from her workplace that a profound transformation began to take place. We discuss our shared journey of navigating the often murky waters of chronic illness, focusing on the importance of sharing our experiences, finding support, and understanding our nervous system's role in chronic illness.

I recall my own experience of exploring the disability process and realizing the profound necessity of advocating for oneself when seeking medical treatment. The tricky part was learning to accept help from friends and family, and to openly communicate about my needs. I found comfort in small gestures of understanding and support, like when my mother baked me a gluten-free pumpkin pie for Thanksgiving. 

The journey through chronic illness is often fraught with unfamiliar challenges and adjustments. Yet, as I found in my journey with polymyositis, there is a silver lining to be discovered. Seeking innovative solutions to manage symptoms, researching the best options, and connecting with a community of people experiencing similar struggles can be incredibly empowering. I was particularly inspired by my friend Angelique Ingram's recovery story, which ultimately led me to start speaking about my own experience of living with a chronic illness. Join me as I share these insights, aiming to inspire and encourage you in your unique journey.

Send us a text

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

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

Ever been curious about the inner workings of chronic illness from the perspective of a renowned specialist who's also a patient? Join us in a profound discussion with Dr.  Saimun Singla, a triple-board-certified physician who battles rheumatoid arthritis daily. Dr. Singla unravels her journey as she was diagnosed with the condition even while she was already a qualified rheumatologist. She brings to light the necessity of early detection, the criticality of educating oneself about chronic illnesses, and the many ways to manage the symptoms.

As we delve deeper into the conversation, Dr. Singla introduces the world of integrative medicine, its immense importance in managing chronic disease, and her personal toolkit for managing her symptoms. From the practical ways to handle a flare-up to the fundamentals of anti-inflammatory diets, physical therapy, and the power of community support, this episode is teeming with valuable information. Plus, we cover the differences between joint pain and joint stiffness, and provide insights on how to differentiate between arthralgia and arthritis.

Lastly, we address the psychological and emotional toll of living with a chronic illness. The importance of setting sensible goals, fostering resilience, and seeking support is underscored. We also discuss how to navigate through the challenges that chronic illnesses bring forth and the invaluable benefit of interacting with people who have shared experiences. As we wind up, we share practical ways to handle flares, and emphasize the necessity of having robust coping strategies when dealing with chronic illnesses. This episode will leave you equipped with a wealth of knowledge to face the battles of chronic illness head-on.

https://linktr.ee/rheumtogrowtx

Send us a text

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

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

Have you ever wondered about the resilience of the human spirit in the face of chronic illness? Brace yourself as we delve into the captivating story of Kiera Chan, a steadfast advocate for disability rights and women's health who lives with adrenal insufficiency and vascular eagle syndrome. At age 20, Kiera started a health journey that would transform her world. With daily adrenal crises and a relentless pursuit for answers, her courage has been tested repeatedly - but she continues to thrive.

Kiera's life is a testament to the importance of self-advocacy in healthcare. She opens up about her experiences, from feeling minimized by healthcare professionals to the arduous task of finding the right treatment. We explore the overlooked aspects of chronic illness, including its impact on mental health and the significance of having a supportive network. Her story offers hope, inspiration, and practical advice for anyone navigating a similar path, showcasing the need for healthcare reform and patient-centric care.

Then, we venture into her daily routine, offering a glimpse into the role medical devices play in her life. From her cortisol infusion pump to her DEXCOM G6, these tools are crucial in maintaining her health. But it's not just about survival; Kiera’s journey is about redefining what living with a chronic illness means. It's about raising awareness, sharing stories, and inspiring change. So, join us as she provides an intimate, enlightening perspective on life with adrenal insufficiency - a conversation that challenges, informs, and inspires.

https://www.instagram.com/chronically_kiera/

Send us a text

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

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

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==

Send us a text

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

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 a text

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

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

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 a text

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

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