Afleveringen
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Welcome to season 2 episode 9 of A Friend for the Long Haul - A Long Covid Podcast! This week's guest is Dr. David Putrino, Professor of Rehabilitation and Human Performance at the Icahn School of Medicine at Mount Sinai, Director of Rehabilitation Innovation for the Mount Sinai Health System was appointed the Nash Family Director of the CoRE - and so many other things. Dr. Putrino and I discussed the onset of the pandemic, its impacts on him and his team (we feel like weâve aged about 10 years since March 2020), and how the work they did early on influenced their response when patients werenât getting better. We also talked about how he and his team care for their own mental health, impediments to research, upcoming studies they have planned, and he answered listener questions like âwill you adopt meâ and my question which was, âhow do I set up a PO Box in New York so I can come to the clinic?â đ€Ł We also get into ableism, gaslighting, ways we can all best work together, and he answered the same questions I ask everyone at the end of each episode. Thanks, again, to Dr. Putrino for joining me! About an hour after we met, I tested positive for the vid again, which kind of made me feel like I was living in Alanis Morrisetteâs âIronicâ video or Bizarro World.
I also want to add - yes, we talk about medical stuff, trauma, and meds and supplements. Just because you hear about those things on this podcast, doesn't mean you should start them. Always discuss everything with your doctor!
Find out more about the Cohen Center for Recovery from Complex Chronic Illnesses (CoRE) here: https://reports.mountsinai.org/article/rehab2024-02-core-center-opens
Follow them on Twitter here (yes, I thrive on spite and still call it Twitter): https://x.com/coresinaiThe team is putting out amazingly helpful videos on their YouTube channel and you should check it out, because a lot of questions listeners had can be answered by that content: https://www.youtube.com/@coresinai
And, of course, they're on Insta: https://www.instagram.com/coresinai/
You can follow Dr. Putrino on Twitter: https://x.com/PutrinoLab and Instagram: https://www.instagram.com/putrino_lab/
Don't forget to like, subscribe, follow, and share A Friend for the Long Haul if you can. And if you're feeling extra generous, leave a review. Your support helps get this in front of more earballs and helps me bring more episodes.
You can listen to the A Friend for the Long Haul Long Covid Theme Songs playlist on Spotify: https://open.spotify.com/playlist/3n0GXLFRWqDJyifglNNM4K?si=7948dbf2222c4392If you'd like to support this low budget/high love podcast, you can check out my Bonfire shirt for silly long covid apparel: https://www.bonfire.com/store/a-friend-for-the-long-haul/
or my Amazon wishlist: https://www.amazon.com/hz/wishlist/ls/3MYBB5G0P7YUD?ref_=wl_share
Thank you for listening!
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Welcome to season 2 episode 8 of A Friend for the Long Haul - A Long Covid Podcast! This week I chat with Jaydo, who you probably know from TikTok and Instagram. Jaydo creates videos focused on "Things You Should Know About Covid," and they've been incredibly successful.
In this episode we discuss:
The Power of Community: Learn how Jaydo's COVID-conscious community is making a difference, including more about the CC Circle, his 0% lending circle for expensive Covid safety gear The Unexpected Influencer: what it's like to become a source of news for thousands Navigating a Divided World: We explore the challenges of being COVID-conscious in a society that often dismisses safety measures - including what it's like to date Listener-submitted questions: Jaydo and I answer questions about to handle difficult social situations, finding love while being cautious, and raising COVID-conscious kids (special mentions to @decolonize__ https://www.instagram.com/decolonize__/ and ShiShi Rose https://www.instagram.com/shishi.rose/ who both post wonderful round-ups of books and resources for children) A Deeper Dive: Delve into the socio-political implications of the pandemic and the importance of critical thinkingA friendly reminder: This episode is a bit longer than usual at about an hour and a half. Feel free to listen in chunks to preserve your spoons.
You can find Jaydo on TikTok at: https://www.tiktok.com/@JaydoCovid
and on Instagram at: https://www.instagram.com/jaydocovid/
Here is his linktree
and his YouTube channels: https://www.youtube.com/@JaydoCovid
https://www.youtube.com/@jaydomusic
Don't forget to like, subscribe, follow, and share A Friend for the Long Haul if you can. And if you're feeling extra generous, leave a review. Your support helps get this in front of more earballs and helps me bring more episodes.
You can listen to the A Friend for the Long Haul Long Covid Theme Songs playlist on Spotify: https://open.spotify.com/playlist/3n0GXLFRWqDJyifglNNM4K?si=7948dbf2222c4392If you'd like to support this low budget/high love podcast, you can check out my Bonfire shirt for silly long covid apparel: https://www.bonfire.com/store/a-friend-for-the-long-haul/
or my Amazon wishlist: https://www.amazon.com/hz/wishlist/ls/3MYBB5G0P7YUD?ref_=wl_share
Thanks again for listening!
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Zijn er afleveringen die ontbreken?
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Welcome to season 2 episode 6 of A Friend for the Long Haul - A Long Covid Podcast! This episode features my friend, Laura Thomas. Laura and I met in an Austin, Texas-based long covid support group, and started talking when she found out that I had moved from Texas because I discovered that my MCAS symptoms improved out of state.
Laura hosts a podcast called Rescued By A Dog, which features stories of dogs saving their people. In this episode, Laura and I discuss:
How we met and our long covid experiences Moving out of state in an attempt to see any improvement in our symptoms Acknowledging the privilege we both had to be able to move Low dose Naltrexone, Paxlovid, anesthesia, and ketamine therapy (none of this is medical advice!) What we call "zero dignity moments" with chronic illness EMDR, brain retraining, staying present "Resentment rebellion" Lymphatic massage The story behind Rescued by a DogFind Rescued by a Dog on Spotify: https://open.spotify.com/show/0t6XikdERybsS3wwwaJb6j?si=c1654161e4504d1e
And Apple Podcasts: https://podcasts.apple.com/us/podcast/rescued-by-a-dog/id1648960693Support the podcast via Laura's Patreon: https://www.patreon.com/RescuedbyaDogPodcast
Don't forget to like, subscribe, follow, and share A Friend for the Long Haul if you can. And if you're feeling extra generous, leave a review. Your support helps get this in front of more earballs and helps me bring more episodes.
You can listen to the A Friend for the Long Haul Long Covid Theme Songs playlist on Spotify: https://open.spotify.com/playlist/3n0GXLFRWqDJyifglNNM4K?si=7948dbf2222c4392If you'd like to support this low budget/high love podcast, you can check out my Bonfire shirt for silly long covid apparel where I'm raising money for a pro license of Zoom (as of right now, I can only record 30-40 minutes at a time and then we have to hang up and come back. Not great for conversational flow!): https://www.bonfire.com/store/a-friend-for-the-long-haul/
or my Amazon wishlist: https://www.amazon.com/hz/wishlist/ls/3MYBB5G0P7YUD?ref_=wl_share
Thanks again for listening!
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Welcome to season 2 episode 5 of A Friend for the Long Haul - A Long Covid Podcast. This episode features Lola Germs, a self-described "pandemic communicator + disabled guy w AuDHD + a funky rare genetic disease." We met on Instagram and once we got to talking we realized we share a lot of weird funky health stuff and our life and work trajectories have been similar in a lot of ways. Lola shares information about the pandemic in a way that's inclusive, creative, and accessible - which is not an easy thing to do, especially with such complex information! We talk about what led her to creating her YouTube channel, important things like the warmest socks you can get, the fact that I didn't sweat for almost two years, how illness impacts self-identity, how gratitude can be weird, the confidence required to care for yourself in modern society, and then we venture on to righting the wrongs of the medical industrial complex, her hopes for the future, climate change, the need for popular science communicators, and the future of space travel. I'm an old lady and I was ready to adopt LG by the end of this episode. Truly. I love smart people with hearts like this, and it's a privilege to get to have these conversations!
Find Lola Germs on social media:
Lola's YouTube channel - https://www.youtube.com/@LolaGerms
Instagram - instagram.com/lola.germs
TikTok - https://www.tiktok.com/@lolagerms and LinkTree with resources - https://linktr.ee/lolagerms
Support Lola's work on ko-fi ko-fi.com/lolagerms or by simply subscribing on YouTube and interacting in the comments.
Don't forget to like, subscribe, follow, and share A Friend for the Long Haul if you can. And if you're feeling extra generous, leave a review. Your support helps get this in front of more earballs and helps me bring more episodes.
You can listen to the A Friend for the Long Haul Long Covid Theme Songs playlist on Spotify: https://open.spotify.com/playlist/3n0GXLFRWqDJyifglNNM4K?si=7948dbf2222c4392If you'd like to support this low budget/high love podcast, you can check out my Bonfire shirt for silly long covid apparel where I'm raising money for a pro license of Zoom (as of right now, I can only record 30-40 minutes at a time and then we have to hang up and come back. Not great for conversational flow!): https://www.bonfire.com/store/a-friend-for-the-long-haul/
or my Amazon wishlist: https://www.amazon.com/hz/wishlist/ls/3MYBB5G0P7YUD?ref_=wl_share
Thanks again for listening!
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Welcome to season 2 episode 4 of A Friend for the Long Haul - A Long Covid Podcast! Join me for a conversation with Merel and JC. Merel leads the Long Covid Choir, and JC is a member. Discover how this unique community has brought joy and support to those living with the debilitating effects of Long Covid. In this episode, we delve into the origins of the choir, how to join, and what to expect from the weekly sessions. Learn about some support group events and Merel's work with Long Covid Kids groups, and the things that bring us joy. We also discuss our experiences navigating healthcare systems in the US, England, and Norway.
Whether you're living with Long Covid or simply curious about this inspiring community, this episode offers hope, connection, and a glimpse into the power of music.
Don't forget to like, subscribe, follow, and share if you can. And if you're feeling extra generous, leave a review. Your support helps get this in front of more earballs and helps me bring more episodes.
You can listen to the A Friend for the Long Haul Long Covid Theme Songs playlist on Spotify: https://open.spotify.com/playlist/3n0GXLFRWqDJyifglNNM4K?si=7948dbf2222c4392If you'd like to support this low budget/high love podcast, you can check out my Bonfire shirt for silly long covid apparel where I'm raising money for a pro license of Zoom (as of right now, I can only record 30-40 minutes at a time and then we have to hang up and come back. Not great for conversational flow!): https://www.bonfire.com/store/a-friend-for-the-long-haul/ or my Amazon wishlist: https://www.amazon.com/hz/wishlist/ls/3MYBB5G0P7YUD?ref_=wl_share
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Welcome to season 2 episode 3 of A Friend for the Long Haul - A Long Covid Podcast! In this episode I chat with Jess London. Jess created an app called TurnTo, which curates the latest research, lived experiences, tips, and insights - so you can find new answers in what's called your "daily drop." It is currently live in Cerebral Palsy, Long Covid, ME/CFS, and Parkinsonâs. I was on the early release team for the Long Covid/ME app, and Jess and I got on so well from the start, I wanted to chat with her to learn more about her intention for the app. The app is totally free so this isn't some sort of paid promotion - I'm always so curious about how people manage to pull off these endeavors and I genuinely find TurnTo very helpful. I was also very curious about how they could build something like this and offer it at no cost. Jess had ME/CFS and her children have Cerebral Palsy, so this app is a true passion project for her. We discuss the creation of the app, their plans for the future, my amazing ability to name things, Jess's ME/CFS experience, and how the development team works to safeguard the app from those charlatans who work in cahoots (or creepy links, trolls, bullies, false info, and shameless self promotion for profit.)
Don't forget to like, subscribe, follow, and share if you can. And if you're feeling extra generous, leave a review. Your support helps get this in front of more earballs and helps me bring more episodes. You can listen to the A Friend for the Long Haul Long Covid Theme Songs playlist on Spotify: https://open.spotify.com/playlist/3n0GXLFRWqDJyifglNNM4K?si=7948dbf2222c4392
If you'd like to support this low budget/high love podcast, you can check out my Bonfire shirt for silly long covid apparel where I'm raising money for a pro license of Zoom (as of right now, I can only record 30-40 minutes at a time and then we have to hang up and come back. Not great for conversational flow!): https://www.bonfire.com/store/a-friend-for-the-long-haul/ or my amazon wishlist: https://www.amazon.com/hz/wishlist/ls/3MYBB5G0P7YUD?ref_=wl_share
As always, thanks for listening!
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Welcome to season 2 episode 2 of A Friend for the Long Haul - A Long Covid Podcast! Thank you for being here! Join me as I chat with Joe Glasgow, who you may know from his Instagram or TikTok. You may also be subscribed to his Substack, Chronically Creating. If you're not, you should be. Each week, Joe offers a prompt and a quote to those of us who may feel we've lost our creative spark due to chronic illness. Joe and I discuss his Covid "journey," his history in comedy, travel, and podcasting, and how that led to him creating such relatable reels and content about long Covid. I also have a huge MCAS reaction in the middle of recording, which is always fun. I had a great time talking with Joe, and and I'm going to admit that I was nervous about recording because I don't always feel like my brain can keep up and he's so funny and quick, but I managed to make him laugh which left me feeling very pleased with myself lol. Usually, I have a hard time listening back to episodes but I genuinely enjoyed hearing this one, so I hope you enjoy it. Don't forget to like, subscribe, follow, and share if you can. And if you're feeling extra generous, leave a review. Your support helps get this in front of more earballs and helps me bring more episodes.
Update for season 2! From this episode, the end of pod questions change! But not question 2, which will always remain, and you can listen to the A Friend for the Long Haul Long Covid Theme Songs playlist on Spotify: https://open.spotify.com/playlist/3n0GXLFRWqDJyifglNNM4K?si=7948dbf2222c4392
If you'd like to support this low budget/high love podcast, you can check out my Bonfire shirt for silly long covid apparel where I'm raising money for a pro license of Zoom (as of right now, I can only record 30-40 minutes at a time and then we have to hang up and come back. Not great for conversational flow!): https://www.bonfire.com/store/a-friend-for-the-long-haul/ or my amazon wishlist: https://www.amazon.com/hz/wishlist/ls/3MYBB5G0P7YUD?ref_=wl_share As always, thanks for listening!
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Welcome to season two of A Friend for the Long Haul - A Long Covid Podcast! Thank you for being here! For episode one, join me as I sit down with Katrina and Corey, the founders of Covid Safe Colorado. Covid Safe Colorado is a grassroots organization dedicated to providing high-quality masks to vulnerable communities in the state. Learn about their journey from starting a mask bloc to building a supportive network of volunteers.
In this episode, we delve into the challenges and triumphs of pandemic activism, the importance of community-led initiatives, and the personal impact of long Covid. Katrina and I also share our experiences as "pacing buddies," exploring how mutual support can help navigate the complexities of chronic illness. If you're considering starting a mask bloc on your own, Corey and Katrina share their lessons learned and offer advice and resources to help you get started. Don't miss this conversation about compassion and the power of collective community care. We hope you enjoyed it as much as we did. Don't forget to like, subscribe, and share for more episodes. And if you're feeling extra generous, leave a review. Your support helps me keep bringing you episodes.
Resources mentioned in this episode:
How to Start a Mask Bloc, a collaborative zine by Fight COVID NOLA, Mask Up Pittsburgh, Mask Bloc ATX, World Wide Mask Map, Masks for London, Mask Block UCD, Mask Bloc LA, and Charlotte Mask Bloc, found at Worldwide Mask Bloc Directory â Find your local Mask BlocCovid Safe Colorado's website and Instagram
Care Work: Dreaming Disability Justice by Leah Lakshmi Piepzna-SamarasinhaKatrina's podcast, Dreaming Back to the Earth
Don't forget to check out the podcast's playlist. Each guest is asked to share their long covid theme song: https://open.spotify.com/playlist/3n0GXLFRWqDJyifglNNM4K?si=7399eb50bf8a4a9d
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Season 1 Episode 17
In this final episode of the podcast for season 1, I got to chat with Sophie, the founder and Creative Director of Berlin Buyers Club. From their website: "Berlin Buyers Club was born in March 2023 with three goals:
1. To spread awareness of Long Covid and adjacent diseases in a way that is relatable and accessible to younger people, as well as anyone else who feels drawn to the vibe.
2. To encourage people to get involved in advocating for Long Covid & ME/CFS research, treatments, preventatives, and cures.
3. To offer a safe space for people with Long Covid, ME/CFS, and PSSD and their allies.
If you can relate to any of this, if you'd like to help us spread the message, if you're interested in normalizing discussion about Long Covid and the need for treatments and preventatives, if you want clean air... Then you're a part of the Club too! Welcome."Sophie and I discussed her experience with long covid, how she came to start BBC, how it has impacted her, and yes, we talk about how cool it was to see Violet Affleck wearing some of the Berlin Buyer's Club merch! We talk about what healthcare has looked for each of us in our respective countries of residence, ways to channel our anger, and advocacy efforts. I hope you'll tune in!
Hit subscribe and leave us a rating to let us know what you think! We're here for you, friends. And thanks again to Sophie for joining me!
Be sure to follow me on Instagram at â https://www.instagram.com/afriendforthelonghaulâ for updates and unhinged content.
My website is: â https://sites.google.com/view/friendforthelonghaulâ
Sophie's Instagram is: https://www.instagram.com/sophsoph.psd/
And the Insta for Berlin Buyer's Club is: https://www.instagram.com/berlin_buyers_club/
Don't forget to check out the pod playlist on Spotify: https://open.spotify.com/playlist/3n0GXLFRWqDJyifglNNM4K?si=c5c70f678a7d4d4d
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Season 1 Episode 16: Damn it, Amy!
Join me as I chat with Amy, a writer, social worker, long covid & ME/CFS advocate, and the brilliant mind behind The Tonic (https://amythetonic.substack.com/) â a refreshing blend of wellness resources and stories for those battling chronic illness.
In this episode, we discuss:
How to break free from the achievement trap and find validation on your terms. Amy's personal journey with long covid, including her fight for long-term disability. The inspiring story behind The Tonic, and how it injects laughter and hope into chronic illness journeys.Whether you're a long hauler yourself, or supporting someone who is, this episode is for you.
#LongCovid #Hope #ChronicIllness #TheTonic
P.S. Looking for more resources on long covid and ME/CFS? Check out Amy's blog, The Tonic!
Mentioned in this episode:
Amy's HealthRising piece on Long Covid and Disability: https://www.healthrising.org/blog/2023/03/02/my-long-covid-disability-journey/
Pain Free You on YouTube with Dan Buglio: https://www.youtube.com/@PainFreeYou
Amy Hamilton at Core Connections Counseling: https://www.coreconnectionscounselling.com/
Hit subscribe and leave us a rating to let us know what you think! We're here for you, friends. And thanks again to Dr. Laurie Nadel for joining me!
Be sure to follow me on Instagram at â https://www.instagram.com/afriendforthelonghaulâ for updates and unhinged content.
My website is: â https://sites.google.com/view/friendforthelonghaulâ
Don't forget to check out the pod playlist on Spotify: https://open.spotify.com/playlist/3n0GXLFRWqDJyifglNNM4K?si=c5c70f678a7d4d4d
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Episode 15: The Five Gifts - Discovering Hope, Healing and Strength When Disaster Strikes
This week on A Friend for the Long Haul, I welcome a fellow traveler on the path of chronic illness! Dr. Laurie Nadel, a renowned journalist and therapist, joins us to share her incredible journey.
Dr. Nadel has battled chronic fatigue syndrome (CFS) and COPD, and understands the physical and emotional toll of long-term illness. We'll delve into her amazing career, her own struggles with chronic illness, trauma, and loss - and her dedication to helping Long Haulers. Some history from Dr. Nadel's website that I think you'll just eat up:
"After an internship with the London Daily Mirror, she worked at Reuters Television in London where she became the first woman news writer. Returning to New York, she became the first woman news writer-producer at ABC News, working with correspondents and cameramen around the world. A member of the Writers Guild of America, Nadel produced news about the Vietnam war and the anti-war movement, Watergate and the Nixon-McGovern presidential election when President Nixon won a second term."
"In 1988, after a long battle with chronic fatigue syndrome, Nadel was laid off while she was medically disabled. As she started to improve with the help of meditation, hypnotherapy and Chinese medicine, she rebooted her journalism career by writing for airline magazines and Menâs Fitness. Around this time, she returned to graduate school to earn two doctorates in psychology and clinical hypnotherapy. These credentials opened the way for her to focus on behavioral health topics and led to her writing several psychology books."
In this episode, you'll learn:
How Dr. Nadel's experience with CFS shaped her work as a therapist. Her unique approach to healing, incorporating elements of psychology, hypnotherapy, and indigenous wisdom. The "Five Gifts" from her book, explained as they relate to Long Haulers (she's committed to offering long-term support for women who endure permanent chronic health difficulties since the first wave of COVID in 2020. With Dr. Noah Greenspanâs Pulmonary Wellness Foundation, she helped launch the longest ongoing support program for Long Covid patients. Practical tools and strategies for building resilience and finding hope amidst chronic illnessDr. Laurie also takes us through some ways to trust our bodies and our guts in an effort to find our inner wisdom and inner healer, and shares some of her favorite meditation techniques.
Whether you're a Long Hauler, someone with ME/CFS, or facing any chronic health battle, this episode is a beacon of strength and support.
Don't miss Dr. Laurie Nadel's inspiring story and advice!
P.S. Check out Dr. Laurie Nadel's book, "The Five Gifts," for an "emergency Go-Kit" for your heart and mind. You can find it on Amazon here but she's also written 7 other books!
You can find Dr. Laurie's website at: https://www.laurienadel.com/
On the Services page, you can find a video meditation journey she speaks of in this episode: https://www.laurienadel.com/services-events.html
Dr. Laurie's Reiki and energy healing for animals and their human companions page is: https://animalreikiplanet.com/
Find out more about the Pulmonary Wellness Foundation here (btw, this isn't an ad, they're just good folks!)
This episode also has a special message from Lior Ocean, my friend and guest from episode 5, who is looking to expand their services to long haulers by offering a sliding scale and even free sessions.
Hit subscribe and leave us a rating to let us know what you think! We're here for you, friends. And thanks again to Dr. Laurie Nadel for joining me!
Be sure to follow me on Instagram at â https://www.instagram.com/afriendforthelonghaulâ for updates and unhinged content.
My website is: â https://sites.google.com/view/friendforthelonghaulâ
Don't forget to check out the pod playlist on Spotify: https://open.spotify.com/playlist/3n0GXLFRWqDJyifglNNM4K
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Episode 14: I Got Bit by the Zombie and I'm not Telling You
This week's episode of A Friend for the Long Haul - a Podcast for Long Covid Friends features Jacob. Listening to the very beginning, I realized that I refer to Jacob as "him." Their pronouns are they/them, and I'd like to acknowledge that and apologize for making assumptions. YOU KNOW WHAT YOU DO WHEN YOU ASSUME.
I'm just gonna add a list of where you can find them now, because they are lovely and I am an old lady and if my three sons grow up with even half of Jacob's empathy and ability to show compassion to others as well as himself I will have done a good a pretty fine job. They've actually made it really easy: https://jacjack.carrd.co/ has all platforms linked and I'm probably about to copy them.
You'll see their content first on TikTok: https://www.tiktok.com/@midwestsidegunn
I started following Jacob when a few of their videos started making the rounds in the long covid community. Jacob does not have long covid, but received a zine from a friend who does and that zine started making them think about how messed up it sounds. They started learning (imagine, a person not affected by your condition starting to listen and learn about it to protect themself and to protect their community!) and then started becoming more vocal about being covid conscious on social media.
In this episode, we discuss:
what led them to becoming more vocal about covid their pandemic experience integrity in the chronic illness and disability space tone policing and being Black in the covid conscious community the intersection of covid justice/activism & disability justice with all of the other major sociopolitical things happening right now (Palestine, Sudan, Congo, etc) Disco and the importance of Donna Summerand so much more <3
In addition, Jacob made us a disco playlist that I've been bopping around to for about a week and you'll love it. Links below:
Apple Music: https://music.apple.com/us/playlist/disco-innit/pl.u-JPAZZK2IX0ygP4
Spotify: https://open.spotify.com/playlist/0efn9oT1r09C72k7j0yoog?si=854d1adbb0214201
THAT'S RIGHT JACOB IS SO CONSIDERATE THEY TOOK THE TIME TO MAKE THE PLAYLIST ON TWO PLATFORMS BECAUSE YOU MIGHT HAVE PREFERENCES AND THEY UNDERSTAND THAT
Hit subscribe and leave us a rating to let us know what you think! We're here for you, friends.
Be sure to follow me on Instagram at â https://www.instagram.com/afriendforthelonghaulâ for updates and unhinged content.
My website is: â https://sites.google.com/view/friendforthelonghaulâ
Don't forget to check out the pod playlist on Spotify: â https://open.spotify.com/playlist/3n0GXLFRWqDJyifglNNM4K
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Mark Your Calendars! The Teal Reveal is Almost Here! âš
Calling all #chronic illness and #longcovid warriors! Join me and Chimere on this bonus episode of A Friend for the Long Haul as we chat about her upcoming virtual prom, The Teal Reveal, happening in just TWO WEEKS!
The Teal Reveal is more than just a party â it's a celebration of resilience and community. This inclusive event supports a fantastic cause:
Your ticket purchase helps fund the important documentary, Black and (un)Believed. It also provides food, medicine, or supplies to two amazing community members in need.Here's what you need to know:
Tickets are on sale now! Get yours at https://www.blackandunbelievedfilm.com/ (don't forget to check your spam folder for your ticket!). Kids under 10 are FREE! Bring your whole crew â partners, pets, and all! There will be music, prizes, and of course, FUN!Plus, Chimere shares an update on her powerful film, Black and (un)Believed, and how it's evolved as she's navigated filmmaking. The episode ends with a heartwarming moment as my 6-year-old (who met Chimere when he was only 2!) gets to say hi!
Find Chimmy on Instagram at https://www.instagram.com/chimereladawn/
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Episode 13: An Emotion Soup
Ever feel like you get the "you look great!" when you definitely don't feel great? Join me and Amy (https://www.instagram.com/longcovidrockstar/) on this episode of A Friend for the Long Haul as we tackle the frustrating things people say to those with chronic illness and long covid. We get real about the pressure to perform and the emotional toll of "have you tried X?"
But this episode isn't all venting! Amy's a total rockstar when it comes to mindset and pacing, and she shares how she reclaimed enjoyment in her life. We even dive into how she negotiated a return to work on her terms (because boundaries are essential!)
Feeling lost in the shuffle of illness? We talk about the impact of social conditioning and the patriarchy on our self-worth, especially for chronically ill and disabled folks. Amy will leave you with some actionable tips for starting a gratitude practice and reconnecting with the parts of yourself that might feel hidden.
This episode is a must-listen if you struggle with
Feeling invisible in your illness Saying good things about yourself Dealing with unsolicited advice Reclaiming joy and purposeHit subscribe and leave us a rating to let us know what you think! We're here for you, friends.
Be sure to follow me on Instagram at https://www.instagram.com/afriendforthelonghaul for updates and unhinged content.
My website is: https://sites.google.com/view/friendforthelonghaulDon't forget to check out the pod playlist on Spotify: https://open.spotify.com/playlist/3n0GXLFRWqDJyifglNNM4K
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Episode 12: Born to be Horizontal, Forced to be Vertical
Navigating Long Covid in Your Early 20s on A Friend for the Long Haul
This week on A Friend for the Long Haul, I'm joined by Ally, who got hit with covid right before her college graduation, which developed into long covid. We explore the unique challenges of starting a new chapter in your twenties after acquiring a chronic illness.
In this episode, you'll hear:
How Ally navigates friendships and relationships What it was like starting her first job after college with long covid Ally's journey with pacing and the importance of mobility aidss The emotions of meeting another long hauler for the first time (Chef Taryn of episode 4!)Plus, we chat about TurnTo, a brand new app designed specifically for people with long covid and ME/CFS!
TurnTo leverages AI to curate personalized daily content, from the latest research breakthroughs to inspiring user stories. Ally shares her experience with working on the development of the app and how it's helped her on her long haul journey. By the way - this is not an ad, the app is free and so useful.
Feeling lost and alone with long covid in your twenties? This episode is for you! Join us for a supportive conversation and discover some tools and resources you may find useful.
#AFriendForTheLongHaul #LongCovidCommunity #ChronicIllnessWarriors
Tune in, and letâs navigate this long haul together.
Donât forget to subscribe, leave a review, and share this episode with anyone who might benefit from hearing Ally's story.
You can find Ally on Instagram at https://www.instagram.com/livinglongcovid/
Be sure to follow me on Instagram at https://www.instagram.com/afriendforthelonghaul for updates and unhinged content.
My website is: https://sites.google.com/view/friendforthelonghaulDon't forget to check out the pod playlist on Spotify: https://open.spotify.com/playlist/3n0GXLFRWqDJyifglNNM4K
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Episode 11: “It is no measure of health to be well-adjusted to a profoundly sick society.” - Jiddu Krishnamurti
Hello everyone, and welcome back to another episode of A Friend for the Long Haul. I’m incredibly excited about this week's guest, Steph Fowler, the fantastic brain behind Misfit Mental Health. Steph is a therapist with a unique and powerful story that will resonate deeply with the many of us who have felt like we just don’t fit in.
In this episode, Steph and I discuss:
Steph’s "Misfit" Experience: We start with Steph’s personal story, where she shares the challenges of facing burnout, and the path to rebuilding her life.
Career Shifts and Finding Her Path: Steph opens up about her career changes and how the search for a better fit eventually led her to work for herself, creating a space where she could be her authentic self.
Living with Chronic Illness and Dynamic Disabilities: We discuss Steph’s experience with chronic illness, dynamic disabilities, and the ongoing challenges of navigating life in a world that often overlooks the realities of living with Long Covid.
The Misfit Mental Health Philosophy: Steph explains how living as a misfit can be both liberating and isolating, and the importance of acknowledging and processing past harms to move toward healing.
Self-Assurance: Steph and I discuss acceptance and self-assurance, and how validating one’s own needs, strengths, and values is crucial in navigating a world that doesn’t always support uniqueness.
Rediscovering and Celebrating Your True Self: We delve into the journey of rediscovering and celebrating the person you are beneath decades of social conditioning.
Join us for a conversation filled with authenticity that I thoroughly enjoyed! Steph also provides us with some tips for what to ask and what to look for when you are seeking a new therapist. Whether you’ve felt like a misfit all your life or are simply looking for inspiration to embrace your true self, this episode is a must-listen.
Tune in, and let’s navigate this long haul together.
Don’t forget to subscribe, leave a review, and share this episode with anyone who might benefit from Steph’s story and wisdom.
You can find Steph at https://misfitmentalhealth.com and on Instagram at https://www.instagram.com/misfit.mental.health.
Be sure to follow me on Instagram at https://www.instagram.com/afriendforthelonghaul for updates and unhinged content.
My website is: https://sites.google.com/view/friendforthelonghaul
Don't forget to check out the pod playlist on Spotify: https://open.spotify.com/playlist/3n0GXLFRWqDJyifglNNM4K -
Episode 10: The 11th Recording and 10th Release
Welcome back to another episode of A Friend for the Long Haul! Iâm happy to have Wanda Belisle join me for this episode. Wanda is a Registered Health Coach whoâs aim is to help people with ME/CFS and Long Covid.
In this episode, Wanda and I dive deep into her story and the work sheâs doing:
Wanda's Prior History with Post-Viral Illness and ME/CFS: We kick things off by exploring Wandaâs own battle with post-viral illness and ME/CFS, which started in her teens, giving us a glimpse into her resilience and strength.
The Possibility of Contracting Covid-19 in February 2020: Wanda shares her story of possibly having Covid-19 early in the pandemic and how it contributed to a severe flare.
Finding an Improved Baseline: Through her work with practitioners and her own efforts, Wanda has managed to find a better baseline. She opens up about the strategies and treatments that have made a difference in her life.
Starting Her Health Coaching Business: Wandaâs passion for helping others led her to start a business as a health coach years before the pandemic. We discuss how her business has evolved since the pandemic began.
Challenging Ableist and Ill-Informed Notions: Both of us reflect on the ableist and ill-informed pre-conceived notions we had about post-viral illness before experiencing it ourselves, and how our perspectives have shifted. This portion may be a bit difficult for some listeners as we confront and name how ignorant we were in the past about these matters.
Tips for the Newly Diagnosed: Wanda offers advice for those newly diagnosed with ME/CFS or Long Covid, providing practical tips for navigating this challenging journey.
Future Plans for Her Coaching Business: Finally, Wanda shares exciting plans she has for her coaching business and her vision for the future.
Join us for an inspiring conversation filled with insights, personal stories, and practical advice. Whether youâre dealing with ME/CFS, Long Covid, or simply looking for a story of resilience and hope, this episode is for you.
Tune in, and letâs get through this long haul together.
PS I am not a client of Wanda's and this is not an ad or promotion. I'm highly selective about any wellness or health professionals I have on this podcast because I am very protective of this community. I have a lot of time for Wanda because of her transparency and openness.
Make sure to subscribe, leave a review, and share this episode with anyone who might benefit from Wandaâs story. You can find her at https://www.wandabelisle.com/ and on Instagram at https://www.instagram.com/wandabelisle
Donât forget to follow me on Instagram at https://www.instagram.com/afriendforthelonghaul/
And check out my website at https://sites.google.com/view/friendforthelonghaul - check out the Providers link to find a living Google doc full of long hauler submitted and approved healthcare providers!
Resources mentioned in this episode:
Byron Katie: https://thework.com/
Jarred Younger's YouTube channel: https://www.youtube.com/@youngerlab
Solve M.E. Videos featuring Jarred Younger:
https://www.youtube.com/watch?v=wJB95m4FLa0
https://www.youtube.com/watch?v=rxdzaWD5wfU
https://www.youtube.com/watch?v=DU0UgWGyi0A
Ally Boothroyd's YouTube Channel for Yoga Nidra: https://www.youtube.com/@SarovaraYoga
Jennifer Piercy's Insight Timer page: https://insighttimer.com/jenniferpiercy
Don't forget to check out the podcast playlist on Spotify using this link: https://open.spotify.com/playlist/3n0GXLFRWqDJyifglNNM4K?si=e67cfc837de84b5d
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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 fatherâs 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!
Donât 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 weekâs 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 weâre 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. Donât 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 weâre 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 xÊ·mÉΞkÊ·ÉyÌÉm (Musqueam), Sáž”wx̱wĂș7mesh (Squamish), and sÉlilwÉtaÉŹ (Tsleil-Waututh) Nations. Beth joined from the traditional territory of the NĂșu-agha-tÊvÊ-pÊ̱ (Ute), hinonoâeinoâ biitoâowuâ (Arapaho), TsĂ©sthoâe (Cheyenne), NdĂ© KĂłnitsÄ Ä ĂĂ GokĂyaa (Lipan Apache), and OÄhĂ©thi Ć akĂłwiĆ 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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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! đ§
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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