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.

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/