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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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/

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

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/

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

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/