Afleveringen
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Welcome back to A Friend for the Long Haul with me, your host, Beth. This week, I am joined by Alysia Dagrosa, a board-certified patient advocate, full-spectrum doula, certified lactation counselor, Endometriosis advocate, and first wave long hauler.
In this deeply personal episode, Alysia recounts the early days of the pandemic, contracting COVID-19 in March 2020, and the challenges she faced living with and caring for her family during lockdown. From her father’s cabin fever-induced escapades THAT WILL INFURIATE YOU to the severe health complications that followed, Alysia's story is both harrowing and heartfelt. She opens up about the multi-system failures she experienced, her own struggles with long Covid, and the emotional toll of dealing with a family in denial. While Alysia and I were talking, I was so wrapped up in her story that I couldn't quite process what I was hearing. While editing this episode, I felt all the emotions and you'll go from curious to incredulous to feeling deep empathy to being simply wowed by Alysia as a human.
In addition, you'll learn SO MUCH about Endometriosis in this episode. If you're struggling with endo, please give this episode a listen. We mostly get into Alysia's endo advocacy work in the second half and she provides so much education here.
Content Warning: This episode discusses serious difficult family dynamics, COVID-19 infection, hospital trips, strokes, and food and body issues which may be difficult for some listeners.
This episode is longer than usual, so feel free to take breaks as needed. Join us for an honest conversation filled with vulnerability, resilience, and even moments of humor. Plus Alysia's amazing singing at the end!
Don’t forget to subscribe, rate, and share the podcast with your friends. Your support helps us reach more listeners who can benefit from these stories. Tune in every Monday for new episodes!
You can find Alysia on Instagram at: https://www.instagram.com/tantielys/
Find out more about A Friend for the Long Haul here: https://sites.google.com/view/afriendforthelonghaul
Or on Instagram at: https://www.instagram.com/afriendforthelonghaul/
Don't miss this show's playlist, which you can find on Spotify: https://open.spotify.com/playlist/3n0GXLFRWqDJyifglNNM4K?si=665f477ed2b647a0
Disclaimer: While this podcast discusses medical topics, none of the content is intended as medical advice. Please consult your medical professional with any questions or concerns you may have.
For more information about the PASC care package fundraiser mentioned at the beginning of this episode, check out https://www.instagram.com/chillusions/
Keywords: Long COVID, patient advocacy, pandemic stories, COVID-19 recovery, endometriosis, endo, advocacy, stroke, personal journey, family struggles, COVID-19 impact
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Season 1 Episode 8: We Really Went off ScriptJoin me, Beth, on this week’s episode of A Friend for the Long Haul, as I have a heartfelt conversation with my dear friend Katy. Katy (a first wave Covid long hauler from Canada) and I have known each other online since 2020. When I announced that Katy was going to be on the podcast, I said that I couldn't remember my Covid life without her. Our experience through the trials of long covid has brought us closer together and we’re sharing our stories with you.In this episode, we reflect on the early days of the pandemic when the uncertainty of prolonged symptoms left us feeling isolated and misunderstood - and that part never really went away. Katy and I discuss our shared experiences with conditions like postural orthostatic tachycardia syndrome (POTS) and mast cell activation syndrome (MCAS), including harrowing episodes of anaphylaxis triggered by food and medications.We discuss our advocacy efforts to raise awareness and support for long Covid sufferers, discussing how we attempt to preserve our energy and find joy in the small details of life. Don’t miss this episode filled with lols, strength, and hope.
By the way, 10kms is equal to 6.21371, I was close!!
Remember to subscribe to A Friend for the Long Haul and rate the pod on your favorite platform. Your support means the world to me and my listeners, and we’re grateful to have your ears.Thank you for listening!Katy was a speaker at the following event, hosted by Ed Yong: https://youtu.be/BjNy1rn0yPk?si=cYV37I8vgST3YVjJ and she will be back on another podcast to talk more about that - hopefully with other speakers from that event. Ed, I'd love to chat with you too! :D Here's Ed's website: https://edyong.me/ You can find Katy on on Instagram at: https://www.instagram.com/suddendeparture/ Keywords: Long Covid, chronic illness, postural orthostatic tachycardia syndrome, mast cell activation syndrome, anaphylaxis, advocacy, covid long hauler, Ed Yong, pandemic, health journey, energy preservation, spoons, spoonie life, pasc, me/cfs, mcas, pots, asthmaLand acknowledgement: Katy and I would like to take a moment to acknowledge the traditional territories on which we are situated. Katy was speaking to you from the unceded traditional territories of the xʷməθkʷəy̓əm (Musqueam), Sḵwx̱wú7mesh (Squamish), and səlilwətaɬ (Tsleil-Waututh) Nations. Beth joined from the traditional territory of the Núu-agha-tʉvʉ-pʉ̱ (Ute), hinono’eino’ biito’owu’ (Arapaho), Tséstho’e (Cheyenne), Ndé Kónitsąąíí Gokíyaa (Lipan Apache), and Očhéthi Šakówiŋ communities.We honor and respect the Indigenous peoples who have lived on and cared for these lands for generations. It is important for us to recognize the histories and cultures of these nations as we continue our conversation today. Thank you.
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Zijn er afleveringen die ontbreken?
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Episode 7: Tips for Traveling with Long Covid During an Active Panini
HI I USE SOME ADULT LANGUAGE IN THIS EPISODE OK
There is no additional guest for this episode because I was traveling for work! I needed to pull something together pretty quickly upon my return, so I asked my Instagram friends what I should talk about and the feedback was overwhelmingly about travel tips. I've done a lot of road trips and a few flights now and (knock on wood) have escaped all past trips Covid-free, so I talk about my experiences and give some tips. The reference to a bucket for the long haul will, um, make sense by the end. This was recorded over the course of a couple of days and I'm still reeling from travel (I forgot to say - schedule rest after any travel. Give yourself a good week. I didn't.) so I repeat myself and there's a lot of good old fashioned word finding going on. Enjoy.
This episode covers:
How gross people are Traveling with kids Advantages of road tripping A mini rant about cruises Tips on traveling intentionally - considering climates, allergens, humidity, screen time, mcas, time required for travel, spoons Communicating your needs POTS and travel - vestibular chaos Potties Mobility aids at the airport and internalized ableism You can't eat at everybody's house Work travel The Job Accommodation Network website and asking for reasonable accommodations at work Tempo the dog is featured heavily in this episode because I don't have the spoons for profesh editing ok thanksResources mentioned in this episode:
The Job Accommodations Network website: https://askjan.org
The Roadside America website: https://www.roadsideamerica.com
Covid Safe Colorado
https://sites.google.com/view/covidsafecolorado/
It's also important for me to make sure you know that the fact that I mention like 500 brands in this episode does not mean that any of them sponsor me so they are not ads, but I'm going to put links to them because honestly if they want to, I'm game:
https://www.estherslv.com/
https://us.loopearplugs.com/
https://drinklmnt.com/
https://www.liquid-iv.com/
https://www.neosporin.com/
https://www.qtips.com/
https://www.lumifyeyes.com/
https://www.rei.com/
https://koa.com/
https://www.airbnb.com/
Also: I AM NOT A DOCTOR OR MEDICAL PROFESSIONAL AND NONE OF THIS IS MEDICAL ADVICE TAKE WHAT I SAY WITH A GRAIN OF SALT I AM JUST A LADY WITH A CHRONIC ILLNESS AND A BIG MOUTH
I'd like to acknowledge that this was recorded on Ute, Arapahoe, Cheyenne, and Apache land.
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Episode 6: Rest is Medicine
Join us in our latest episode of A Friend for the Long Haul, where we dive deep into the world of chronic illness and movement with the incredible Julie Hunter!
Julie is an endurance athlete and health & fitness coach with over a decade of experience. After battling her own health problems, including ME/CFS, Fibromyalgia, MCAS, POTS, and multiple TBIs, Julie turned her journey into a beacon of hope for others facing similar struggles and used her experience not only to help herself cope with Long Covid, but to help others with her coaching business, Movement with ME.
In this episode, Julie opens up about:
Top Trends with Long Covid Clients: Discover the latest insights and trends Julie has observed while working with Long Covid sufferers.
Julie's Personal Journey: Get inspired by Julie's courageous battle against chronic illness and how it fueled her passion to help others reclaim their lives.
Personalized Movement Plans vs. Graded Exercise Therapy: Ever wondered about the difference? Julie breaks it down for us.
Whether you're looking for personalized strategies to incorporate movement into your routine or seeking solace in shared experiences, this episode is a must-listen! 🎧
Tune in Monday, May 6th on Spotify, Apple Podcasts, and Amazon Music. #PodcastHealing #WellnessJourney #COVIDRecovery #EmpowermentPodcast #LongCovid #ChronicIllness #PainManagement #HealthCoaching #FitnessJourney #MECFS #Fibromyalgia #MCAS #POTS #TBIs #EnduranceCoaching #InvisibleIllness
You can find out more about Julie's approach to coaching on her website: www.movementwithme.com
or, find Julie on Instagram: https://www.instagram.com/movement_with_me
Don't forget to check out the podcast playlist on Spotify!
https://open.spotify.com/playlist/3n0GXLFRWqDJyifglNNM4K?si=867eb9ca16b94ac4
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Episode 5: Memes are Tiny Prayers
In this episode, I'm joined by the incredible Lior Ocean, an intuitive medium, fine artist, and beacon of light. Lior shares their story of navigating long covid, chronic illness, and disability while finding solace in art and spirituality. Lior speaks from a very unique perspective - they worked on the Ebola outbreak in West Africa in 2016 and 2017. Just before the start of the SARS-CoV-2 pandemic, they obtained a Master's Degree in Infectious Diseases.
We delve into the philosophy of non-duality, and Lior shares insights on its intersection with chronic illness and how spirituality influences their approach to life's challenges. Recording this episode was honestly very healing for me, as Lior and I discuss how to start learning to trust your intuition when you feel like you can't trust your body. I cried about 4 times editing this conversation!You can find Lior at https://www.liorocean.com/ and on Instagram at https://www.instagram.com/liorocean/
Books mentioned in this episode:
Burnout: The Secret to Unlocking the Stress Cycle by Emily Nagoski and Amelia Nagoski When Things Fall Apart: Heart Advice for Difficult Times by Pema Chodron Loving Our Own Bones: Disability Wisdom and the Spiritual Subversiveness of Knowing Ourselves Whole by Julia Watts Belser -
Episode 4: Oat-my-goodness, Chef!
In this episode of "A Friend for the Long Haul," I invite you to pull up a chair and join a warm, inviting conversation with Chef Taryn Marquez.
Through her incredible journey battling severe COVID-19, Taryn emerged not only as a survivor but as a beacon for many. Join us as we delve into her courageous story, sharing laughs, tears, and a delicious recipes along the way.
On the Menu: Vegan Chocolate Peanut Butter Protein Balls
Get ready to tantalize your tastebuds as we whip up one of Chef Taryn's signature treats! These delectable snacks aren't just about flavor – they're full of nutrition.
1/2 cup maple syrup 1/4 cup + 2 tablespoons peanut butter 3/4 cup GF rolled oats 3 tablespoons mini vegan chocolate chips 1 tablespoon Zivolife functional food powder (or chia or flax seeds) 3 tablespoons cocoa powderMix all ingredients thoroughly, form into balls or any shape that suits you on parchment and refrigerate overnight.
In our friendly kitchen chat, we'll explore:
Taryn's COVID Experience: From her challenging stay in the hospital to her remarkable road to recovery, hear firsthand how she overcame the odds with unwavering determination and a sprinkle of culinary magic.
Bloom-19: Spreading Awareness and Deliciousness: Discover the story behind Taryn's initiative, Bloom-19, and how she's using her platform to share recipes tailored for fellow long Covid sufferers.
Looking Forward with Hope: Taryn has big dreams for the future and we discuss the silver linings she's discovered amidst the storm. Through her optimism, we're reminded of the importance of savoring (food pun!) each moment.
The Importance of Family: At the heart of Taryn's journey lies a profound appreciation for the love and support of family. We'll explore the role of connection, compassion, and community in navigating life's toughest challenges, including caring for her father with the help of her sister, Cindy.
So grab your apron, pour yourself a cup of comfort, and join us for an episode filled with warmth, wisdom, and of course, a sprinkle of culinary delight. Oh, and there are some bloopers in there, too.
Taryn's website and store can be found at https://www.bloom-19.com/
and you can find her on Instagram at https://www.instagram.com/bloom19official/
Thanks for listening! If you enjoyed this episode, please follow and give me and the guest some stars. :)
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Episode 3: A Developing Friendship
In this episode of A Friend for the Long Haul, I chat with John Zeising about his career as an EMT and firefighter, his passion for photography, and the unexpected turn his life took after getting COVID-19 on his Christmas Eve shift in 2020. Discover the profound impact of disability advocacy on his life and how he remains committed to serving his community.
This episode was recorded later in the day on a Friday, during a week when I had traveled out of town for the first time in a long time. I was dealing with post-exertional malaise as a result. You may find that I'm a little slower than usual to compute and there may be some rambling, but it's real life with long Covid, so I'm just going to roll with it.
You can find out more about John by going to his website, 4th Dimension Photography LLC (johnzeising.com)
John's podcast is called Long Covid - Sharing the Journey and you can find it on Spotify.
Follow the A Friend for the Long Haul podcast playlist on Spotify! Each guest shares a song that relates to their experience with Long Covid.
John is also on Instagram at https://www.instagram.com/colorado_sky/
Thanks for listening! If you enjoyed this episode, please follow and give me and the guest some stars. :)
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Episode 2: That Time Megan Bit into an Onion
In the second episode of A Friend for the Long Haul, join host Beth and her darling friend Megan as they delve into the depths of online girl friendship. Remember in the intro episode of this podcast, when Beth said that her brand is dark humor as a coping mechanism? If you thought the intro was relatable, wait until she starts chatting with Megan. Despite a significant age gap and never having met face-to-face, Beth and Megan share a bond that transcends time and distance. Megan is the powerhouse behind Fancy Free Nursery in Tampa, Florida (we'll give some credit to her husband Robby, too) and she opens up about her battle with long Covid since November 2020.
Tune in as Megan chats about her pre-illness dedication to fitness, the challenges of running a small business while chronically ill, covid-conscious family dynamics, and raising awareness of Covid's impact on children. Plus, don't miss Megan's ingenious STEM project idea for school kids.
Important Links:
Megan's business website, Fancy Free Nursery: https://www.fancyfreenursery.com/
Fancy Free's Instagram: https://www.instagram.com/fancyfreenursery/
Follow the A Friend for the Long Haul podcast playlist on Spotify! Each guest shares a song that relates to their experience with Long Covid.
Thanks for listening! If you enjoyed this episode, please follow and give me and the guest some stars.
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Episode 1: True Friendship is like Oxygen with LesaJoin in for the inaugural episode of A Friend for the Long Haul, where we dive deep into the world of friendship and overcoming whatever the heck the last four years have been with our host, Beth, and her dear friend Lesa. Lesa, a business development strategist, a devoted godmother, and long hauler, shares her story with us. In this heartfelt conversation, Beth and Lesa open up about Lesa's move to Nashville that did not go as planned, the realities of living with long Covid, the use of home oxygen therapy, as well as the importance of community. Discover the little things that make a big difference, from the humble sticky note to the healing magic of puppies. tldr: Listen in as Beth and Lesa tell each other how much they love each other for about 55 minutes.
Important Links! None of these are ads, but are mentioned in this episode:
Lesa's Substack: https://lesaschultz.substack.com/
Ally Boothroyd's YouTube channel for Yoga Nidra: https://www.youtube.com/@SarovaraYoga/
Information on the Pulmonary Wellness Foundation https://pulmonarywellness.org/
Follow the A Friend for the Long Haul podcast playlist on Spotify! Each guest shares a song that relates to their experience with Long Covid.
Thanks for listening! If you enjoyed this episode, please follow and give me and the guest some stars. :)
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A whopping two-minute episode to give you an idea of the A Friend for the Long Haul podcast, coming to your earballs on April 1, 2024!
