How do you turn a life of chronic pain and addiction into one of resilience and inspiration? On this episode of "My Spoonie Sisters," we welcome Andrea Vincent, a beacon of hope in the chronic pain community. Andrea opens up about her journey from high school misdiagnoses to her battles with osteoarthritis, hypermobility syndrome, and fibromyalgia. Her story takes a powerful turn when she discusses her struggle with alcohol as a coping mechanism and her triumphant path to sobriety in 2012. Motivated by the desire to be a better role model for her family, Andrea’s relentless spirit led her to create the "Growth, Resilience, and Grit" journal, a transformative tool designed to help others navigate their own health challenges.

We delve into the transformative power of self-care and gratitude in managing chronic pain, exploring how simple daily routines can make a significant difference. Andrea shares invaluable insights on the evolution of chronic pain management strategies, emphasizing mindfulness, meditation, and holistic practices such as acupuncture and massage. The heart of our discussion revolves around her innovative chronic pain journal, which empowers individuals to track their symptoms, treatments, and medications, ensuring clear communication with healthcare providers and avoiding the pitfalls of self-medication.

The episode culminates with the successful launch of Andrea's chronic pain journal, which has garnered praise from both the community and medical professionals. We also highlight exciting upcoming projects, including a collaboration with the Portland Chronic Pain Project for an art show and plans for digital distribution. Andrea’s personal anecdotes, such as her love for coffee and preference for mountain retreats, add a warm, relatable touch to her inspiring story. Don't miss this episode packed with practical tips and heartfelt stories that will leave you feeling empowered and motivated.

www.grgmindbody.com

FB; Growth, Resilience & Grit - https://www.facebook.com/grgjournal

IG: @grgmindbody.com

TT:@grgmindbody.com

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Hi, Jen here! We are so glad to have you back. I want to personally thank those that have signed up with Rare Patient Voice recently. We love your support of the podcast, and this is another way that you can by signing up with Rare Patient Voice through our referral link. Remember, we're here to support you every step of the way.

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Are you curious about how patient participation can revolutionize medical research? Join us as we sit down with Emily, a dedicated bio-enthusiast and biotech professional, to uncover her journey from cell biology student to trailblazer at the biotech startup Immu. Emily shares her mission to make complex scientific concepts approachable, fueled by her passion for CRISPR technology and personal experiences that shaped her career. You’ll gain exclusive insights on finding reliable research studies and clinical trials and practical advice on leveraging platforms like clinicaltrials.gov and withpower.com.

Navigate the intricate world of patient research consent forms with Emily’s expert guidance on ensuring fair compensation and understanding key elements such as incidental findings and data transparency. We also explore the power of patient communities, especially for those using medical devices or participating in research, and how these communities foster a sense of control and empowerment. Listen in to discover how being a part of research can transform patient experiences, offering hope and a profound sense of agency and belonging.

https://www.emilyharari.com/
https://www.instagram.com/thepatientscientist?igsh=NHgzejRzb2FreHE2

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Hi, Jen here! We are so glad to have you back. I want to personally thank those that have signed up with Rare Patient Voice recently. We love your support of the podcast, and this is another way that you can by signing up with Rare Patient Voice through our referral link. Remember, we're here to support you every step of the way.

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/

Have you ever wondered how a small act of kindness can make a colossal difference in someone's life? Join us for an uplifting conversation with Dawn, the inspiring founder of "Cards to Warriors," who transitioned from a radiation therapist to an advocate for patients and caregivers. Dawn shares her heartfelt journey and the touching story behind this incredible initiative that spreads joy and support through "Happy Mail" to those battling illness. Discover the various ways to get involved, from receiving uplifting mail to joining the card crew and sending encouraging messages, and learn why staying connected and spreading positivity is so vital in challenging times.

Delve into the inner workings and challenges of the Cards to Warriors program in our second segment. Find out how participants can opt-in monthly, send and receive cards, and even find pen pals to share their journey with. Dawn sheds light on the special "yikes button" for emergencies, ensuring no one is left without a card, and discusses the importance of financial contributions to keep the program running. Hear about the evolution of the program, from its early days as ChronicWarriorsOrg to its current form, and the technical hurdles they've overcome to maintain privacy and security for participants.

Finally, we issue an exciting challenge: join the card crew and start spreading joy! Learn about the simple steps to sign up, maintain confidentiality, and create meaningful connections through personalized information. Dawn shares inspiring examples of various groups involved, from pre-med clubs to high schools, and emphasizes the importance of respecting preferences to make the card exchange special for everyone. Listen in to understand how your small act of kindness can foster friendships, strengthen community bonds, and bring immense joy to those who need it most.

Cards2Warriors.org

Cards2Warriors.org/happy-mail (direct link to sign up)

Cards2Warriors.org/get-involved (to volunteer and send cards)

IG: @cards2warriors

FB: @cards2warriors

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Hi, Jen here! We are so glad to have you back. I want to personally thank those that have signed up with Rare Patient Voice recently. We love your support of the podcast, and this is another way that you can by signing up with Rare Patient Voice through our referral link. Remember, we're here to support you every step of the way.

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/

Have you ever wondered how one navigates life with multiple chronic illnesses? Meet Alexa Sutherland, who has been fighting against juvenile rheumatoid arthritis since she was just 15 months old and later fibromyalgia, ankylosing spondylitis, and the more recent Grave's disease diagnosis. Her journey is a testament to resilience and the power of community. Alexa shares her story, highlighting both the struggles and the support she's found, particularly through memorable connections formed at significant moments, like a poignant meeting in Colorado. Her advocacy on social media shines a light on the often unseen challenges of invisible disabilities, emphasizing the importance of camaraderie among those with similar battles.

Join us as we unpack the complexities of managing multiple chronic illnesses such as Graves' disease, fibromyalgia, RA, and AS. Alexa and I delve into the world of evolving medications and the emotional turmoil that new diagnoses can bring. We'll also touch on the excitement and nerves surrounding my upcoming speaking opportunity in DC, sharing insights and the sometimes-comical confusion that comes with engaging in high-level scientific discussions. This episode promises to provide a heartfelt look at chronic illness management, the hope brought by medical advancements, and the unyielding strength within the chronic illness community.

Blog www.glowlexa.com

IG: https://www.instagram.com/glowlexa/

TT: https://www.tiktok.com/@alexasutherland13

Send us a text

Hi, Jen here! We are so glad to have you back. I want to personally thank those that have signed up with Rare Patient Voice recently. We love your support of the podcast, and this is another way that you can by signing up with Rare Patient Voice through our referral link. Remember, we're here to support you every step of the way.

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/

Can you imagine the frustration of battling a chronic illness and not finding the right treatment? On our milestone 100th episode, we reconnect with the remarkable Alison, who was diagnosed with rheumatoid arthritis at the age of 28. Her journey from struggling with an unhelpful specialist to meeting the incredible Dr. Tony is nothing short of inspiring. Despite the bittersweet news of Tony's upcoming retirement, Allison's story is a testament to the impact a dedicated and compassionate doctor can have on a patient's life.

Hair loss can be a devastating side effect of chronic illness, and we tackle this sensitive topic with Allison. She opens up about how hair extensions and toppers have helped her regain confidence. We discuss the life-changing effects of Humira on her condition, and offer practical beauty tips for taming those pesky baby hairs. And because it's not all serious, we share our favorite coffee indulgences and quirky local coffee shop experiences, proving that sometimes, it's the small joys that make the biggest difference.

Our episode underscores the essential role of community in navigating chronic illness. We stress the power of connecting with others who truly understand your challenges, and how sharing stories and support can be more beneficial than any medical advice. The importance of living fully, finding joy in each moment, and persistently seeking the right medical support is highlighted. Whether it's through a supportive network or a beloved doctor like Tony, inspiration and resilience are within reach. Tune in to celebrate our 100th episode and be uplifted by stories of hope and determination.

Send us a text

Hi, Jen here! We are so glad to have you back. I want to personally thank those that have signed up with Rare Patient Voice recently. We love your support of the podcast, and this is another way that you can by signing up with Rare Patient Voice through our referral link. Remember, we're here to support you every step of the way.

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/

Ever felt overwhelmed by a health condition misdiagnosis? In this heartfelt episode, join me, Gracefully Jen, as I recount my personal journey with psoriasis, starting from the first sores that appeared on my ankle back in 2016. Initially mistaken for a skin infection, my condition went through a series of misdiagnoses until a visit to my rheumatologist revealed the surprising truth: a rare form of psoriasis called pustular psoriasis, caused by my TNF inhibitor treatment. Listen as I share the emotional highs and lows of navigating this challenging diagnosis and the steps I took to find an effective treatment for both my joint and skin health.

This episode is not just my story but a beacon of hope and support for others facing similar challenges. From the confusion and frustration of initial misdiagnoses at urgent care to the moment of clarity with my rheumatologist, I walk you through the entire journey. If you or someone you know is living with psoriasis, this episode is packed with valuable insights and encouragement. Don't forget to check the show notes for more information on the new podcast I was interviewed for, and show them some love as well! Let’s raise awareness and support each other in our health journeys.

https://www.instagram.com/iheartpodcast/
https://www.instagram.com/my_spoonie_sisters?igsh=MWk1Y2t0emE2eTgxcw%3D%3D&utm_source=qr
https://www.instagram.com/gracefully_jen?igsh=YzA0aHo0d3l4M3Y%3D&utm_source=qr
https://a.co/d/0hAn9WK
https://a.co/d/hsOR7ow
https://linktr.ee/JenniRW

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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/

Curious about how to navigate life with rheumatoid arthritis while maintaining a positive outlook? Join us as we reconnect with Cheryl Crow with Jen Weaver, spirited advocates and fellow Spoonies, who share her heartfelt journies. Jen opens up about the severe allergic reactions she's faced with TNF inhibitors leading to pustular psoriasis, offering a candid look at her daily routines and the importance of personalized treatment plans. Her story is one of resilience, community, and finding unexpected blessings amid the challenges of chronic illness.

Ever wondered how social media can lead to life-changing opportunities? Discover how our online connections brought us to the Rheumatology Research Foundation, where we took on the pivotal roles of Rheum Champions at the Rheumatology Investigators Meeting in Denver. Learn about the Foundation’s mission to address workforce shortages and the critical role of patient and caregiver voices in shaping the future of rheumatology research. From grant updates to the purpose of the investigators' meeting, we provide an insider’s look at the exciting advancements in the field.

Finally, gain valuable insights and practical tips for living with arthritis, whether you’re newly diagnosed or a long-time warrior. From highlighting favorite arthritis gadgets like the Kitchen Mama can opener and Grace and Abel compression gloves, to sharing personal entertainment picks and exploring support groups, we cover it all. Plus, hear about our new roles as moderators on the Cabana app and the importance of community support. Tune in for an episode filled with heartfelt stories, expert advice, and a touch of inspiration to help you navigate your journey with arthritis.

https://rrf.beta-markstein.co/rheum-champion/

https://podcasts.apple.com/us/podcast/arthritis-life/id1519637317?i=1000662917607

Send us a text

Hi, Jen here! We are so glad to have you back. I want to personally thank those that have signed up with Rare Patient Voice recently. We love your support of the podcast, and this is another way that you can by signing up with Rare Patient Voice through our referral link. Remember, we're here to support you every step of the way.

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/

• Website: https://www.revelinghealth.com/
  • Energy Reset Starter Kit is on the website
• Website for 5 Day Pain Free Challenge: https://www.painfreechallenge.ca/
  • Next one runs from July 22-26, 2024.
• Links to all socials:
  • Instagram: https://www.instagram.com/revelinghealth/
  • Facebook: https://www.facebook.com/
  • LinkedIn: https://www.linkedin.com/company/98442935/
  • Pinterest: https://pin.it/5ASvRFGmY

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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/