Bonus Episode: The Diagnosis Struggle – Medical Gaslighting & Patient Power

Between Season 3 and 4, we're bringing you a powerful bonus two-part episode that dives deep into the real-life chaos of the diagnostic journey.

In Part 1, Rachel and Tina get real about medical gaslighting—the subtle (and not-so-subtle) ways patients are dismissed, misheard, or told "it's all in your head." From endless referrals to the emotional exhaustion of chasing answers, they unpack the frustration of being bounced between specialists, handed vague explanations, and constantly fighting to prove their pain is real.

In Part 2, we welcome our fellow Spoonie and special guest Tilly Rose, author of Be Patient. Tilly spent over 20 years as a so-called "medical mystery" before receiving diagnoses like Addison’s Disease and hypermobile Ehlers-Danlos Syndrome. Her memoir is a raw, witty, and powerful look at what happens when the healthcare system forgets the human behind the patient chart. Be Patient pulls the curtain back on the inner workings of the healthcare system—highlighting both its failings and its heroes—and makes a bold call for change. Through storytelling and advocacy, Tilly is using her voice to speak up for patients everywhere.

Follow Tilly's journey on Instagram at: https://www.instagram.com/thattillyrose/

Use these links to purchase Tilly's book:

Order BE PATIENT (free worldwide shipping): https://blackwells.co.uk/bookshop/product/Be-Patient-by-Tilly-Rose/9781780726229

Order BE PATIENT UK: https://www.amazon.co.uk/Be-Patient-Laughter-Hospital-Curtain/dp/B0CXK6XDNG/ref=mp_s_a_1_1?crid=1FGRBU999UI33&dib=eyJ2IjoiMSJ9.5Dks7Y1UNnyBacVhgUlrrw.Ke1Cd6DNaQvJVIfp8jVqFpPn7GtlOiRVPfa8l5I4Cns&dib_tag=se&keywords=be+patient+tilly+rose&qid=1747329860&sprefix=be+patient%2Caps%2C163&sr=8-1

Visit Tilly's website, That Patient Collective:  https://www.thatpatientcollective.com/

Tilly Rose's website is a platform dedicated to sharing patient stories and experiences, offering a perspective of life behind the hospital curtain. It serves as a space for individuals to connect, share their journeys, and advocate for change in the healthcare systemis a platform dedicated to sharing patient stories and experiences, offering a perspective of life behind the hospital curtain. It serves as a space for individuals to connect, share their journeys, and advocate for change in the healthcare system

 We’ll be announcing Season 4 soon, so make sure you’re following us on Instagram @spoonfulofstrength for updates and sneak peeks!

Season 3 Finale: Reflecting, Re-Capping, and Soul Healing

In the first half of our Season 3 finale, Rachel and Tina celebrate their first full year of the SpoonFull of Strength podcast! We look back at some of our favorite moments, highlight a few unforgettable Spoonies we've had the honor to meet, and share the biggest lessons we've learned over the past year. Plus, we re-cap the Top 5 most popular episodes from our very first year!

In the second half, Rachel leans on Tina to dive into her journey with soul healing — the practice of aligning your body, mind, and spirit to promote better overall health. Tina shares what she's learned, how it’s helped her chronic illness journey, and how anyone can start their own path toward deeper healing.

As we wrap up Season 3, we want to say a heartfelt thank you to all our listeners, our fellow Spoonies, and our amazing Instagram community. Your strength, support, and stories inspire us every single day. We can’t wait to see where Season 4 takes us — but for now, we’re sending love and spoons your way! 💙🥄

THIS EPISODE IS SPONSORED BY SALTY PROVISIONS: Salty Provisions was created to bring clean, high-quality sea salts and seasoning blends to those who care about real ingredients, inspired by a love for Norwegian Sea Salt and a mission to make gourmet cooking accessible. Their handcrafted, award-winning salts are free from artificial additives, fillers, and anti-caking agents, making them perfect for anyone—including those with POTS who need to increase their sodium intake. POTS warriors love our Norwegian Sea Salt Capsules, Savory Electrolyte Broth, and Salted Maple Electrolyte Latte, helping them manage symptoms without relying on processed foods. Find them at WWW.DOYOULOVESALT.COM and on Instagram/Facebook ⁠@saltyprovisions⁠. Use code SPOONFULL for 20% off your order!

In this two-part episode, we dive into the emotional journey of grieving your old self when chronic illness or sudden health changes turn life upside down.

InPart 1, Rachel and Tina open up about the rollercoaster of emotions that come with physical progression or receiving a new diagnosis. They share their personal experiences, the challenges of adjusting to a new reality, and the ways they’ve learned to navigate loss while finding hope.

InPart 2, we welcomeEmily, who at just 26 years old suffered a massive ischemic stroke that left her left side paralyzed. Now 28 and still on her recovery journey, Emily shares her story of relearning to walk, the ongoing rehab process, and how she’s finding purpose after life as she knew it changed overnight.

This episode is all about resilience, healing, and learning to honor both the past and present versions of yourself. Tune in for an honest and heartfelt discussion on grief, adaptation, and growth. 🎧💙

Follow Emily's journey at: https://www.instagram.com/ems.stroke.of.lightning/

In this two-part episode ofSpoonFull of Strength, we take a deep dive into the portrayal of chronic illness in Hollywood. In Part 1, we explore how TV shows and films depict chronic illness—what they get right, what they get wrong, and the impact of these portrayals on public perception. We also highlight celebrities who use their platform to raise awareness and advocate for those with chronic conditions. Plus, stick around for a list of must-watch movies and shows featuring chronic illness.

In Part 2, we sit down withMaggie Bushway—a writer, filmmaker, and journalist from North Mississippi. After surviving childhood brain cancer and living with seizures and autoimmune diseases, Maggie has turned her pain into powerful storytelling. Through short films, documentaries, writing, and content creation, she shares stories that inspire hope. Her bookPearls brings her journey to life through three perspectives: her father’s, her 8-year-old self’s, and her present-day self’s. Maggie’s journey is one of resilience, creativity, and advocacy—don’t miss this powerful conversation.

You can follow Maggie's story in Instagram at: https://www.instagram.com/mkbushway/

Maggie's book is available here: https://a.co/d/0m8km4L

Tune in for an eye-opening discussion on Hollywood’s impact and an inspiring interview with a storyteller who knows firsthand what it means to fight for representation. 🎬✨

Here is a list of some Chronic Illness related movies and shows and where to find them. https://docs.google.com/document/d/e/2PACX-1vTw9bzrHDJPHQBetDSeovzkM1zyh3O1k4havDYNf_3HzP0K9w21_XIbtaWvhFjG__AVgSwZJvHym6Oj/pub

This podcast is sponsored by Blue Sky and Water Adventures—your go-to for stress-free travel planning and accessible adventures. Whether you're looking for customized travel arrangements that fit your needs or want to start your own flexible travel business, Blue Sky helps you explore the world on your terms!

Contact Kim on Instagram @blueskyandwateradventures for more information!

In this special two-part episode, we dive into the crucial role of nutrition for the chronic illness community.

🌿 Part 1: Rachel and Tina explore the impact of nutrition on managing chronic conditions, sharing their personal experiences and insights on how food choices can support overall well-being.

🧘‍♀️ Part 2: We welcome Roxanne, a certified yoga teacher and holistic nutrition health coach who has been living with lupus for 14 years. She shares her mindfulness-based approach to health, offering science-backed tips and tricks that have been instrumental in her healing journey. Roxanne also introduces RL Wellness, her virtual yoga studio designed specifically for those with chronic illnesses, where she fosters a supportive and empowering community.

Don’t miss this conversation filled with practical strategies, inspiration, and encouragement for your wellness journey!

🔗 Learn more about Roxanne at www.roxannelerner.com or on Instagram at https://www.instagram.com/rlwellnessdc/

🎙 Season 3 of SpoonFull of Strength is almost here! 🌟 Premiering February 4, 2025, this season dives deeper into the challenges, triumphs, and untold stories of life with chronic illness. This season, we’re bringing you real conversations and expert insights.

This season, you’ll meet incredible guests who'll share their journeys with resilience and humor. Plus, we’re tackling topics like romantic relationships, addiction, nutrition and more.

Tune in for a season full of inspiration, laughter, and a reminder that you’re never alone on this journey. 💙

📅 Mark your calendars and join us for a new episode every week starting 2/4!

In the final episode of Season 2 and 2024, we wrap up the year with laughter and resilience. In Part 1, Rachel and Tina share how humor can bring light to the challenges of living with chronic illness. From embarrassing moments to laugh-out-loud jokes, we explore the healing power of laughter. In

Part 2, we talk with Christie, a resilient warrior who faced a breast cancer diagnosis while navigating life with multiple sclerosis. Christie shares her journey using stem cell therapy for her MS and alternative medicine for cancer. Join us for an uplifting and inspiring end to the season!

Follow Christie here: https://www.instagram.com/christiesproba/ Read one of Christie's Blogs here: https://docs.google.com/document/d/1PT_mnm9n6HFMk5LkdkM2cKth1HJ3DeTn3qbYfbTLFmM/edit?usp=sharing

In our penultimate episode of Season 2, Rachel and Tina dive into the journey of finding purpose after a chronic illness diagnosis. Whether you're still working or unable to work due to your condition, this episode explores the profound question: "Why did this happen to me?" In part two, we speak with Tim, a Crohn's warrior who has transformed his experience with chronic illness into purpose through his website, InvisibleCondition.com. Tim shares how he built a platform where people can find support, community, and connection. Join us for an inspiring conversation about resilience, redefinition, and the power of turning struggles into strength. Find Tim here: Website: https://www.invisiblecondition.com/ LinkedIn: https://www.linkedin.com/in/timreitsma/ Instagram: https://www.instagram.com/invisible_condition/ Newsletter: https://www.invisiblecondition.com/subscribe Apple: https://podcasts.apple.com/us/podcast/the-invisible-condition-podcast/id1703432562 Spotify: https://open.spotify.com/show/4kDTQ9eTFpWFDID9vsXFxW?si=508fb250e5e547c9 YouTube: https://www.youtube.com/@Invisible_Condition Other: https://theinvisibleconditionpodcast.buzzsprout.com

This special two-part episode dives into the challenges and strategies for traveling and living with chronic illness. In Part 1, Rachel and Tina share valuable tips and tricks for traveling safely while prioritizing your physical health. In Part 2, we meet Chloe, who opens up about her journey with multiple chronic illnesses, both physical and mental. Residing in Australia, Chloe offers a unique perspective on the differences in healthcare systems between Australia and the U.S. She shares her daily experience of managing debilitating pain and the mental load that comes with it. Follow Chloe's journey here: https://www.instagram.com/chronicallychloeabigael/

In this two-part episode, we explore the healing power of hobbies and their role in providing an outlet for those living with chronic illness. In Part 1, we discuss how hobbies can improve mental well-being, reduce stress, and create a sense of purpose. In Part 2, we’re joined by Abe, a neurodivergent therapist who shares his journey with ADHD and mental illness. Abe dives into how his personal medical history has shaped his approach to therapy and how he helps others navigate their challenges. Follow Abe's Journey Here: https://www.instagram.com/zesquid7/

In this two-part episode, we're tackling the unique challenges of the holiday season and shining a light on a chronic illness journey. Part 1: We dive into practical strategies for managing the holidays with chronic illness. From setting boundaries and adjusting expectations for family gatherings to battling fatigue and finding moments of joy, this discussion is packed with tips to help you thrive through the season. Part 2: We’re joined by Kimberly, who shares her journey living with Ankylosing Spondylitis. Hear her story of resilience, learn about the ups and downs of her diagnosis, and discover how she’s navigating life with strength and grace. Tune in for a mix of holiday survival tips and inspiring conversations! Follow Kimberly here: https://www.instagram.com/kj5mccarthy/

This week on SpoonFull of Strength, we dive into the world of physical activity and chronic illness. In Part 1, Rachel and Tina share their insights on the unique challenges of staying active while managing chronic conditions. In Part 2, we meet Caitlyn, a courageous 16-year-old living with POTS (Postural Orthostatic Tachycardia Syndrome) and AMPS (Amplified Musculoskeletal Pain Syndrome). She opens up about the realities of balancing high school life and chronic illness, showcasing her incredible strength and determination. Follow Caitlyn's journey on Instagram at: https://www.instagram.com/_10_cat_10_/

In this powerful two-part series of SpoonFull of Strength, we explore the heart of communication, resilience, and perspective through the lens of chronic illness.

Part 1 features Rachel and Tina as we dive into the often challenging—but incredibly important—topic of talking to children about chronic illness. We break down communication tips based on age, share helpful books that can support these conversations, and discuss how to gently involve kids in your chronic illness journey while still preserving their sense of security and understanding.

Part 2 introduces you to Ashley, a remarkable woman living with ALS. She opens up about her earliest symptoms, the emotional weight of receiving a diagnosis with no cure, and the ways her perspective on life has transformed since. Ashley shares the deep gratitude she feels for her support system—including her beloved service dog, Revna Jean—and how she's finding strength and beauty even in the hardest moments.

This is a deeply moving and inspiring episode that reminds us of the power of honesty, support, and grace through life’s most difficult challenges.

Follow Ashley on Instagram at: https://www.instagram.com/athena_ash_/

Read her poetry here: https://www.spilledpoems.com/

Buy her book here: Spilling the Tea volume 2 https://a.co/d/8LSrVbd

Here are some links for books to discuss chronic illness with children:

Why Does Mommy Hurt?: Helping Children Cope with the Challenges of Having a Caregiver with Chronic Pain, Fibromyalgia, or Autoimmune Diseasehttps://a.co/d/hg1E5Lo

My Mama Has Chronic Pain: A simple explanation of chronic pain from a child's point of view (The My Mama Series)https://a.co/d/h0CN2aD

What Happens When Someone I Love Doesn't Feel Good: A Book About Chronic or Terminal Illness That Won't Go Awayhttps://a.co/d/1PtRZuc

This episode is sponsored by Spicey — the universal heat patch for fast, targeted relief. Check them out at getspicey.com and follow along on Instagram @getspicey.

In this heartfelt episode, we dive into the impact of chronic illness on family dynamics. In Part 1, Tina and Rachel share their insights on how relationships within a family evolve after a chronic illness diagnosis. In Part 2, we hear from Diana, the inspiring mother of Gaby, who lives with multiple chronic illnesses. Diana opens up about Gaby’s strength through numerous surgeries and the resilience they’ve built together as a family. Follow Diana and Gaby's journey here: https://www.instagram.com/knowingbetter.livingbetter/

In this episode of SpoonFull of Strength, we dive into the powerful role of spirituality in managing life with chronic illness. From religion and meditation to yoga and mindfulness, we explore how finding faith—whether it’s in a higher power or within ourselves—can offer strength and resilience. We discuss the ways spiritual practices can bring peace, perspective, and purpose amid health struggles. In the second half, we’re thrilled to welcome Di, also known as Di the Yoga Witch. Di shares her deeply personal journey with Endometriosis and opens up about how an ectopic pregnancy may have triggered her painful symptoms. As a yoga instructor and intuitive healer, she brings her unique blend of magic and mindfulness to the show, giving hosts Rachel and Tina an insightful tarot reading. Di’s story and her spiritual practices offer an inspiring reminder of the healing potential within each of us. You can follow Di the Yoga Witch here: https://www.youtube.com/@di.the.yogawitch https://www.facebook.com/di.tyw https://www.instagram.com/di.theyogawitch/ https://www.threads.net/@di.theyogawitch https://www.tiktok.com/@di.the.yoga.witch

In this two-part series, we dive into the challenges of managing multiple chronic illnesses and the emotional weight that comes with it. In Part 1, we speak with Rachel and Tina as they share their experiences juggling numerous diagnoses. They discuss the mental overload, coordinating care between multiple specialists, and making sure everyone is up to date on their conditions and symptoms. Their conversation sheds light on the complexities of managing overlapping symptoms and maintaining their mental well-being through it all. In Part 2, we hear from Dave, who has been living with Type 1 Diabetes since age five and Epilepsy since age 16. He opens up about the trauma of early insulin shots, the impact of a low blood sugar episode that triggered a seizure, and the subsequent diagnosis of Epilepsy. Dave’s story illustrates the resilience needed to navigate the mental and physical challenges of managing two serious conditions, while he offers insight into the balancing act required to lead a fulfilling life.

In today’s episode, we’re joined by two inspiring spoonies! In Part 1, Kait from Season 1 returns to share her expertise as an OT, breaking down the '4 P's' of energy conservation—practical tips to help you save your spoons. In Part 2, Bill opens up about his life with Neurosarcoidosis, from being a star lacrosse player to enduring seven brain surgeries. It’s a powerful story of resilience, adaptation, and finding strength in the face of life-changing challenges.Follow Bill on Instagram at bmac33Read more about Neurosarcoidosis here: https://en.wikipedia.org/wiki/NeurosarcoidosisFollow Kait on Instagram at alignedk8Listen to her podcast episode here: https://open.spotify.com/episode/4gX7fIzuzwbnUsMFOx4Thx?si=c62d387ae0bf4707Read Kait's Clinical Research Journal here: https://journals.lww.com/clinorthop/citation/2024/09000/what_i_wish_my_surgeon_knew__i_am_more_than_a_hip.7.aspxThe 4 P’s in Energy Conservation Prioritize: Decide what needs to be done today, and what you can do throughout the rest of the week• Making a list of to-do items in order of importance.• Set goals for yourself. Ask yourself, what do I want to achieve today (this week, this month, this year, etc.)Plan: Plan ahead to avoid having to take extra steps or measures during your daily activities• Identify the time of day in which you have the most energy, and then plan to do your most challenging or most important tasks during that time.• Making sure you have seating available for wherever you are going or in areas of your environment where you require breaks. • Keep a chair or a stool in the kitchen so you can take breaks as needed. • Write out your grocery list beforehand so you know exactly what to get and not have to wander around the store.• Plan to have people support you in tasks that are extra difficult. • Before beginning any tasks, gather all of the items you need before beginning. This will eliminate extra trips to gather materials.Pace: It is important to take it slow when completing tasks. • Breaking down tasks into manageable units or stages.• Take breaks as needed.• Use deep breathing strategies during your breaks.• Alternating hard tasks and easy tasks. Position: The positioning of our bodies as well as items around us can help save energy. • Keeping items that are needed frequently within reach. For example, keep most used items on the counter rather than higher shelves.• Using adaptive equipment such as a reacher, sock-aid, dressing stick, long sponge, shoehorn, adaptive jar openers, etc. • Sit in comfortable positions during breaks. • Position our bodies to be sitting up straight so we can engage in deeper breathing.

In this episode of SpoonFull of Strength, we dive into the importance of advocating for your health. In the first segment, Rachel and Tina share their experiences and tips on how to take charge of your healthcare journey and stand up for your needs. In the second part, we interview Rachel, a resilient woman living with Narcolepsy and Cataplexy. She opens up about her long road to finding the right doctor, the challenges of managing her condition, and how music has become her powerful form of self-expression and therapy. Tune in for an inspiring conversation filled with insight and strength.

In this special, supersized episode, we bring you two incredible stories of resilience from women living with Chiari Malformation, each with their unique journey. First, Kristina shares her experience of losing the ability to walk as a teenager, being confined to a wheelchair, and how, after years of searching, she found the right doctor who helped her regain the feeling in her legs. Today, she's a wife and mother, embracing life fully. In the second half, we speak with Joanne from North Wales, UK, who endured a decade of debilitating headaches, choking episodes, and exhaustion. After two surgeries, she found relief and turned her journey into a powerful book, detailing her surgeries through personal diary entries shared with her husband. These two stories highlight the diverse experiences of living with Chiari and the strength it takes to overcome the challenges. Follow Kristina here: https://www.instagram.com/kmps95/ Follow Joanne here: https://www.instagram.com/chiaritraveller/ Purchase Joanne's book here: Chiari and Me - It's Not Just A Headache https://amzn.eu/d/atl8btW

In this two-part episode of SpoonFull of Strength, we explore the emotional rollercoaster of living with a chronic illness. In part one, Rachel shares a deeply personal account of her journey after an unexpectedly tough doctor’s visit, as we discuss the highs and lows of managing chronic illness. In part two, our Spoonie Spotlight shines on Charu, who opens up about her life with Primary Biliary Cholangitis (PBC) and Autoimmune Hepatitis. Charu's inspiring story of navigating chronic illness while raising young children highlights her resilience and determination to thrive through it all. You can follow Charu here on Instagram: https://www.instagram.com/a.spoonful.0f.joy/ If you are living with one of these conditions and are looking for support, you can join one of these Facebook support groups that Charu is involved in. For AIH: https://www.facebook.com/groups/Autoimmunehepatitis/?ref=share&mibextid=NSMWBT For PBC: https://www.facebook.com/groups/PBCangels/?ref=share&mibextid=NSMWBT

In this inaugural episode of Season 2, we dive deep into the exciting changes we've implemented to bring you a fresh and engaging listening experience. Join us as we discuss the importance of making difficult decisions to prioritize your chronic illness, even when it means saying goodbye to familiar routines. Rachel shares a personal story about her MS tattoo and the hilarious mishap that almost led to a very different design. Get ready for a candid conversation about self-care, resilience, and the power of embracing change.

In our Season 1 Finale, we take a heartfelt look back at how SpoonFull of Strength began, celebrating the incredible guests who've shared their stories with us. We highlight some of our favorite episodes and much more! Plus, we reveal the lucky winner of our custom hoodie giveaway. Stick around for some fun outtakes at the end of the episode! Shop the Etsy Shop here: https://spoonfullofstrength.etsy.com Big thank you to our Spoonies that helped us out this year! Please give them a follow below: Instagram handles: Episode 4: Clarity claritymromero Episode 6: Christina therunciblespoonie Episode 8: Mayra ms_tink_a_bility Episode 10: Rocio madreautoinmune Episode 12: Gia gia_mora Episode 13: Cards2Warriors Cards2Warriors Episode 14: Karissa: chronically_karissa Episode 16: Steven steven_chiari_warrior Episode 18: Michelle michhrobinson Episode 20: Kali kali_soulcall Episode 22: Em Em.Westy Episode 23: Kait alignedk8 Episode 24: Dani flarefreecreations Episode 25: Miranda undefinedbypots Episode 26: Julie slooper.at Episode 27: Rare Patient Voice rarepatientvoice Episode 28: Kim beautifleye314

In our penultimate episode of Season 1, we dive into the perceptions surrounding chronic illness. We explore how we viewed our conditions before receiving a diagnosis and how those perceptions evolved over time. We'll also discuss the impact of disease progression on personal identity and how society often perceives those living with chronic illness.

In this two-part episode of SpoonFull of Strength, we dive into the world of physical therapy and the patient experience.

In Part 1, Rachel and Tina sit down with physical therapists Kyle (a general and sports PT) and Jessica (a neuro specialist) to talk about the unique challenges Spoonies face in physical therapy. From the importance of pacing to the need for personalized care, Kyle and Jessica offer valuable insight—and practical advice—on how to find the right physical therapist who understands chronic illness.

In Part 2, we talk with Anna, a resilient warrior from Australia living with Lyme disease. After five years of being dismissed and misdiagnosed, Anna shares her journey to finally getting answers, and how a holistic approach has helped ease her symptoms. Her story is a powerful reminder of the importance of being heard and the strength it takes to advocate for yourself.

Follow Anna's journey here on Instagram:

https://www.instagram.com/me_vs_lyme/

🎙️ This episode is sponsored by Spoonie Sister Shop – a chronic illness awareness brand creating cute, comfy apparel and gifts made for spoonies, by a spoonie. Founded by Michelle in 2018 after her own health journey, the shop is all about helping you wear your strength and raise awareness in a way that feels true to you. Whether you're living with a chronic condition or supporting someone who is, there's something meaningful waiting for you at Spoonie Sister Shop.

✨ Shop now at SpoonieSisterShop.Etsy.com
📱 Follow @SpoonieSisterShop on Instagram, TikTok, Threads, and Facebook
💌 Want 10% off your next order? Join the email list!

Spoonie Sister Shop—because awareness should be empowering, comfortable, and made with heart. 💕🥄

Meet Kim, a resilient Lupus warrior who faced two major surgeries before finally receiving her diagnosis, all during the height of the COVID pandemic. Now an ambassador for the Lupus Foundation, Kim has transformed her journey into one of advocacy and awareness. With an unwavering spirit and deep faith, she shares her inspiring story of learning to become her own best advocate. Follow Kim here: Blog https://beautifleye.blogspot.com/ LinkedIn https://www.linkedin.com/in/kimberlyaboddie/ Facebook https://www.facebook.com/kimberly.boddie Twitter https://twitter.com/bodybyboddie Snapchat beautifleye Instagram https://www.instagram.com/beautifleye314/ Twitch beautifleye Tiktok https://www.tiktok.com/@beautifleye314 Youtube: https://www.youtube.com/@beautifleye314 Read her poetry here: https://mzwerdsmyth.wordpress.com/ Listen to her podcast here: https://podcasters.spotify.com/pod/show/6z8kutbnacc040mg0my4eo4qv Sign up for a Lupus Walk Walk https://support.lupus.org/site/TR/WTELN/General?px=2516687&pg=personal&fr_id=2024 She'll be volunteering at Baltimore Walk on September 21st She'll be walking at DC Walk on September 28th https://lupuswalk.app.link/e/4w6y3J644Jb She'll be volunteering at the Richmond Walk on October 12th

On today’s episode, we sit down with Pam from Rare Patient Voice, an organization dedicated to giving patients and caregivers a platform to share their experiences and insights. Through surveys and interviews, they help shape the future of medical products and services for better patient care. Sign up here: https://www.rarepatientvoice.com/rp/Spoonfullofstrength Follow them on Instagram at: https://www.instagram.com/rarepatientvoice/

In this episode, we chat with Julie, who has faced scoliosis since childhood and also lives with Chiari Malformation. She shares her inspiring journey of improving her scoliosis through horseback riding and details her experience undergoing surgery for Chiari Malformation. Now, Julie dedicates her time to helping people with disabilities enjoy outdoor activities. Her positive attitude and resilience are truly admirable. Follow Julie on Instagram here: https://www.instagram.com/slooper.at/

Join us as we meet Miranda, a passionate dancer and entertainer who left the West Coast to chase her dreams in New York City, all while navigating life with POTS (Postural Orthostatic Tachycardia Syndrome). In this episode, Miranda shares her remarkable 15-year journey to finally receiving a diagnosis and how she’s built a supportive and inspiring community on Instagram for others facing the challenges of POTS. Follow Miranda here: https://www.instagram.com/undefinedbypots/

In this episode, we introduce you to Dani, who shares her journey living with Rheumatoid Arthritis. She recounts the pain she has endured since infancy, beginning with an ankle injury at birth that went untreated until adulthood. Dani also discusses how her pregnancies triggered the onset of her RA symptoms, offering an intimate look into her experiences and resilience. Follow Dani on Instagram here: https://www.instagram.com/flarefreecreations/

In this episode, we have an insightful conversation with Kait, who lives with Miserable Malalignment Syndrome (MMS). Kait shares her journey with MMS, detailing the multiple surgeries she has undergone to alleviate the lifelong pain caused by the condition. She opens up about her shift from pushing through the pain to learning to listen to her body. Kait's story is one of strength and resilience, offering valuable perspectives on managing chronic pain and advocating for one's health. Follow Kait on Instagram at: alignedk8 Read more of her story here: https://miles4hips.org/kaitlyns-story

On this week's episode, Tina talks with Em West, all the way from Australia. Em details her story of being diagnosed of MS at the age of 19, her scary relapse that affected her vision, and how nutrition and exercise helped her manage her illness. Em also tells us how she got into only the 2nd trial of HSCT in the entire country. Has this treatment helped her? Well, you'll have to listen to find out! Connect with Em on Instagram here: em. westy and chronicallywell.club

In this episode, we talked about our must have essentials for chronic illness. Some of these items we have tried, some of these items we can't wait to try. All these items are available at the link below and every item is a four-star item and above! Don't forget to like & subscribe. Follow us on Instagram and Facebook at SpoonFull of Strength Item List: https://1drv.ms/w/s!Ag8cYKv0DCY5u2jEt7olmkiwTF3z?e=39TcXc

**THIS EPISODE CONTAINS DISCUSSION OF SENSITIVE SUBJECTS, SUCH AS SEXUAL ASSAULT, DOMESTIC VIOLENCE, SELF HARM AND SUICIDE. VIEWER DISCRETION IS ADVISED** In today's episode, we sit down with Kali from Puerto Rico to explore her profound mental health journey. Kali opens up about her experiences from childhood to the present, sharing the therapeutic steps and wellness practices that have helped her cope with her chronic illness. She recounts a pivotal incident at work a few years ago that triggered past childhood trauma and profoundly impacted her mental health. Kali’s resilience and strength are truly inspiring, and her story is sure to move and motivate you. Follow Kali here: Instagram: @Kali_Soulcall YouTube: https://www.youtube.com/@Kali_Soulcall

Today, we're diving into the world of mindfulness and meditation. Our expert, Tina, shares her journey, highlighting the incredible health benefits she's experienced. Tina will also tell us how meditation empowered her to climb Mt. Fuji, just three years after being diagnosed with cancer. We'll explore the distinctions between mindfulness and meditation and discover how dedicating just two minutes a day can bring peace to your mind and body. If you haven't tried it yet, we invite you to start today. Tina has included 3 meditation exercises. If you want to come back to these, here are the time stamps for each exercise. 4 minute meditation: 36:32 4 minute meditation: 40:27 8 minute meditation : 44:!2

In this two-part episode of SpoonFull of Strength, we explore alternative therapies that go beyond traditional medicine to help manage chronic illness.

In Part 1, Rachel and Tina open up about their personal experiences with therapies like acupuncture, cupping, massage, and vitamin supplementation. They share how each approach has (or hasn’t) helped them manage symptoms like fatigue, inflammation, and pain—and why being open to non-traditional methods can make a big difference on the healing journey.

In Part 2, we’re joined by Johanna, a yoga instructor whose personal story is nothing short of inspiring. After suffering from chronic migraines since childhood due to a head injury, Johanna found lasting relief through yoga. Her healing journey led her to complete yoga teacher training in Bali, and today she teaches a variety of styles including Ashtanga, Yin, Hatha, and Restorative yoga across five California studios.

Johanna now leads workshops like Yoga for Migraines and Yoga for Divorce, blending movement, breathwork, and energy alignment to support the body and mind. Her approach includes tools like chakra work, moon phases, and the eight limbs of yoga—all aimed at improving sleep, circulation, flexibility, and mental clarity.

Whether you're navigating chronic illness yourself or supporting someone who is, this episode offers powerful insight into how holistic and alternative therapies can play a meaningful role in healing.

Follow Johanna on Instagram at: https://www.instagram.com/thecatpose/

and on her website:

https://www.thecatpose.studio/

THIS EPISODE IS SPONSORED BY SALTY PROVISIONS: Salty Provisions was created to bring clean, high-quality sea salts and seasoning blends to those who care about real ingredients, inspired by a love for Norwegian Sea Salt and a mission to make gourmet cooking accessible. Their handcrafted, award-winning salts are free from artificial additives, fillers, and anti-caking agents, making them perfect for anyone—including those with POTS who need to increase their sodium intake. POTS warriors love our Norwegian Sea Salt Capsules, Savory Electrolyte Broth, and Salted Maple Electrolyte Latte, helping them manage symptoms without relying on processed foods. Find them at WWW.DOYOULOVESALT.COM and on Instagram/Facebook @saltyprovisions. Use code SPOONFULL for 20% off your order!

Today, we welcome Michelle Robinson from Northern Ireland. Michelle is living with PCD (Primary Ciliary Dyskinesia), a condition she was born with, that causes frequent colds and pneumonia . Her involvement in PCD Support UK allows her to advocate and help other people living with PCD. Follow her on Instagram here: https://www.instagram.com/michhrobinson/ Check out PCD UK's webpage for resources here: https://pcdsupport.org.uk/

Today, we talk about the process of getting the diagnosis. From tests, to mental effects , to the frustrations of communication with doctors, we cover it all. We also took a poll from Instagram, and you won't believe the results!

On today's episode, we speak with Steven Lopez, Sr. , who details his life living with Chiari Malformation and a CSF leak that cannot be found. He's turned his illness into advocating for his illness. He is organizing a walk for Chiari in Tampa, Florida. His positivity and strength is an inspiration! Here's how you can donate or join the walk: (Pick the Tampa location for Steven's walk) http://www.conquerchiari.org/index.asp Connect with Steven here: https://www.instagram.com/steven_chiari_warrior/

On today's podcast, we talk about adjusting to your "new normal" after being diagnosed with a chronic illness. And, even adjusting to changes years into your illness once progression sneaks in. We speak about changing jobs, a social life that changes, and emotional challenges when your body is not able to do the things it used to. Follow us on Instagram at SpoonFull of Strength Shop at our Etsy shop here: https://spoonfullofstrength.etsy.com

Welcome to another episode of SpoonFull of Strength. Today, we are meeting Karissa Fox, who shares her ongoing battle with a CSF leak from a lumbar puncture. She was previously diagnosed with Chiari Malformation, the lumbar puncture was supposed to give her relief. It turned out to be devastating when the LP gave her a CSF leak that has dramatically changed her life. Listen to this episode to hear how this leak has caused her to be in bed, lying flat, for 20 hours a day. Follow Karissa (kfofosho) on IG here: https://www.instagram.com/kfofosho/ If you want to reach out to her via email, you can send it here: Karissa.fox1@outlook.com

Today, we talk about all the ways we can support someone with a chronic illness. And, we invited Dawn, from Cards2Warriors in to talk about her wonderful organization that sends cards to spoonies, caregivers, family members, or healthcare workers. You can sign up to receive their happy mail here: (NO COST TO DO THIS) https://www.cards2warriors.org/ Click here to nominate someone (or yourself) in crisis to receive an extra bit of encouragement: https://www.cards2warriors.org/nominate Donate here: https://secure.givelively.org/donate/cards-2-warriors-org-inc/5-sends-two-cards Follow Cards2Warriors on Facebook and Instagram: IG: https://www.instagram.com/cards2warriors/ FB: https://www.facebook.com/cards2warriors Help them hit their goal of 100,000 cards this year!

Today, we have the pleasure of speaking with Gia Mora, a talented performer, producer, and climate-focused writer. Gia shares her extraordinary journey, starting with a childhood marked by frequent broken bones. For nearly 30 years, doctors dismissed her symptoms as "normal" before finally investigating further. Gia was diagnosed with Hypermobile Ehlers-Danlos Syndrome, and subsequent genetic testing revealed she also has Osteogenesis Imperfecta. Throughout her life, Gia has demonstrated remarkable resilience and positivity. Her passion for sustainability has guided her to where she is today. Join us as we explore Gia's inspiring story. Find Gia here: Website - https://GiaMora.com Instagram - https://instagram.com/gia_mora Threads - https://thread.net/@gia_mora YouTube - https://www.youtube.com/@gia_mora LinkedIn - https://www.linkedin.com/in/gia-mora Newsletter - https://giamora.substack.com

We have a guest this episode! Rachel's husband and Tina's brother, Ed, joins us today to talk about his role in Chronic Illness....being a spouse and caregiver. We talk about how Chronic Illness affects a marriage and how he uses his "PU method" helps him navigate the ups and downs of Chronic Illness.

This week, we sit down with Rocio, all the way from Madrid, Spain. She details her life, being diagnosed with Sjogren's at a young age and finding her way through pregnancy and miscarriage. Follow her on Instagram here: https://www.instagram.com/madreautoinmune/ Subscribe to her newsletter here and stay up to date on her life: https://madreautoinmune.substack.com/ @aesjogren Spanish Association of Sjogren's

Today, we discuss the Myths and Misconceptions of Chronic Illness. We tackle our top 5 (We may have added a 6th one in at the end) myths and explain the truth to these misconceptions. We'd love to hear your feedback! Follow us on Instagram and Facebook at SpoonFull of Strength. Take a look at our Etsy shop, where you'll find trendy shirts, hoodies, mugs, candles and so much more1 Etsy Shop:: https://spoonfullofstrength.etsy.com

Romantic relationships can be challenging, but adding a chronic illness into the mix brings a whole new layer of complexity. In this two-part episode, we explore how chronic illness impacts relationships—communication struggles, feelings of guilt, intimacy challenges, and the importance of support.

In Part 2, we talk with Jessica Krauser, a dedicated advocate for the Parkinson’s community, wife, and mother of twins, who was diagnosed with Parkinson’s at 37. We discuss her journey with Parkinson’s, the lessons she’s learned, and how she’s helping others through her nonprofit Changing Parkinson’s and her podcast, The Secret Life of Parkinson’s.

Whether you're in a relationship, dating, or wondering how to balance love and illness, this episode is for you. Tune in for real talk, shared experiences, and advice on keeping love strong through life’s toughest challenges. 💙💖

Follow Jessica on Instagram at:  https://www.instagram.com/the_secret_life_of_parkinsons/

Support Jessica's non-profit here: website: https://5kforjk.org/

Listen to The Secret Life of Parkinson's here:

YouTube: https://www.youtube.com/@thesecretlifeofparkinsons

Spotify: https://open.spotify.com/show/3yF7PrgSjI0wcZnUOqmbsY

THIS EPISODE IS SPONSORED BY SALTY PROVISIONS: Salty Provisions was created to bring clean, high-quality sea salts and seasoning blends to those who care about real ingredients, inspired by a love for Norwegian Sea Salt and a mission to make gourmet cooking accessible. Their handcrafted, award-winning salts are free from artificial additives, fillers, and anti-caking agents, making them perfect for anyone—including those with POTS who need to increase their sodium intake. POTS warriors love our Norwegian Sea Salt Capsules, Savory Electrolyte Broth, and Salted Maple Electrolyte Latte, helping them manage symptoms without relying on processed foods. Find them at WWW.DOYOULOVESALT.COM and on Instagram/Facebook @saltyprovisions. Use code SPOONFULL for 20% off your order!

Today, we have a wonderful guest on our show! Meet Mayra, a woman who, after almost 2 months of non-stop, excruciating electric zaps in her face, received a diagnosis of Trigeminal Neuralgia. She walks us through her story of Drs not listening and not ordering the test she needs to get her assumed Multiple Sclerosis diagnosis. Mayra will sure put a smile on her face because of her joy, her fight and her dedication to empower and support women! Find her On Instagram: https://www.instagram.com/ms_tink_a_bility/ On Facebook: https://www.facebook.com/ms.huicochea?mibextid=ZbWKwL On TikTok: https://www.tiktok.com/@ms.tink.a.bility?_t=8n5YZW04b7v&_r=1 Watch her story on Linktree: https://linktr.ee/ms.tink.a.bility Here are some news articles about Mayra (On The New Face of MS): https://www.thenewfaceofms.com/post/meet-mayra-huicochea https://www.thenewfaceofms.com/post/couples-ms-meet-mayra-fredi-huicochea

In this week's episode, we do something we've NEVER done before. This episode is completely UNEDITED. We both experience cognitive issues with our illnesses and we bring you the real us...No edits here!. All of our UMMS, can't find the word, stumbling over our sentences...it's all there! MAKE SURE AND STAY TIL THE END WHERE WE COMPLETELY LOSE IT. We discuss cognitive changes: Why they happen, the mental side of dealing with them and some tips and tricks to deal with it.

In this episode we interview Christina Lisk. She details her life of chronic issues from a very young age and how she turned her illness into art through her writing. Christina spent many years battling pain, only to be diagnosed with Nutcracker Syndrome. She shares the surgery that corrected her Nutcracker and the possible diagnosis she is currently working through. Links to her wri Nothing Ever Happens in Fox Hollow-Volume 2: Christina's Story is called "Fox Hollow Secrets" **Trigger Warning: it does include mention of Sexual Assault** https://www.amazon.com/Nothing-Ever-Happens-Fox-Hollow/dp/B093K87QWT Last Stanza Poetry Journal, Issue #14: I Never Knew Christina's Poem is Called A Million Shes Before Me https://www.amazon.com/Last-Stanza-Poetry-Journal-Issue/dp/B0CKQZRG9S Follow Christina on Instagram at therunciblespoonie

On this episode, we discuss working with Chronic Illness. We talk about managing a healthy work/life balance, revealing your diagnosis to your employer and share some stories of our working experience. Make sure to follow us on Instagram at: https://www.instagram.com/spoonfullofstrength/ Have questions about FMLA and ADA? Look here for more info (US info here): https://www.dol.gov/agencies/whd/fmla https://www.ada.gov/topics/intro-to-ada/#:~:text=The%20ADA%20prohibits%20discrimination%20on,origin%2C%20age%2C%20and%20religion.