A Friend for the Long Haul: A Long Covid Podcast

A Friend for the Long Haul - A Long Covid Podcast 100% produced by a disabled Covid long hauler. If you'd like to support my work, please check out the following ways you can do so:My ⁠Amazon wish list⁠, which currently focuses on low-spoon activities for my family this summer. We have four kiddos, with three kids who are also navigating disabilities. You can also visit my ⁠⁠new Amazon storefront⁠⁠, where I share only the items I use, love, or highly recommend. If you use my links to buy products you already purchase from Amazon, they'll throw me a few pennies.Check out my ⁠Bonfire shop⁠, where I create and sell long Covid items (shirts, totes, hats, etc) that reflect my dark sense of humor coping mechanism.---Hello, and welcome to another episode of A Friend for the Long Haul - A Long Covid Podcast! This week’s guest is Ray, who most long haulers will know from TikTok and Instagram as @rayandstormi. Ray, one of the first long haulers I met in September 2020, has stayed in touch since. A registered nurse and dog trainer, she shared her experience with Trigeminal neuralgia (TN), a chronic, severe facial pain disorder affecting the trigeminal nerve, known as one of the most painful conditions. Ray discussed her brain surgery for TN, her long COVID story, and being bendy friends (hypermobile/EDS).Since this episode was recorded, Ray has been hit by a number of setbacks - the most difficult being when her landlord decided to sell the townhouse she’s been renting for almost a decade. Ray has been a pivotal member of the long covid community from the start, so I really want to bring awareness to the gofundme she created to help her while she faces housing insecurity after her brain surgery: https://www.gofundme.com/f/help-ray-overcome-health-and-housing-crisis?attribution_id=sl:a483392d-3284-4f33-aa3e-22897038ef47&utm_campaign=man_ss_icons&utm_medium=customer&utm_source=copy_linkIf you’d rather provide mutual aid to Ray directly, here is her Venmo information: https://venmo.com/u/RayandstormiI’m also selling a series of holiday tshirts on my Bonfire shop in honor of Ray, and proceeds will be shared with her:“Happy Paw-lidays! Cure long covid” features a brown poodle, like the service dog Ray is training, Goose. The pup is wearing a red scarf and earmuffs. All I Want for Christmas is a Cure for Long Covid design 1 features Santa’s sleigh and reindeerAll I want for Christmas is a Cure for Long Covid design 2 features a cute sloth wearing a red hat and sweater, asleep on a branch adorned with holiday lights: “I survived another year - that’s your present” features a sausage dog with pink presents and a pink hatRay also inspired the design of a shirt that says “Yes, I’ve tried yoga,” that has a flower on it flipping the peace sign. All shirts are available in long and short sleeve shirts, sweatshirts, and hoodies.You can find Ray on Instagram here: https://www.instagram.com/rayandstormi/And on TikTok here: https://www.tiktok.com/@rayandstormi This video helps tell Ray’s covid story: https://www.tiktok.com/@rayandstormi/video/7144530664161889578 Please share this episode, or Ray’s gofundme, if you can. And if you can donate, I know that it will be greatly appreciated. Thanks for joining me for this chat, Ray - we need to arrange more of them!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

Welcome to a special pre-holidays ep of A Friend for the Long Haul! This is just shy of 2.5 hours but full of good chats. Here’s the guest list! Caryn Zaner (0:01:01) is a clinical psychologist specializing in helping folks with identity & values alignment, anxiety, & group therapy. Find their professional Instagram account here. My obsession with Caryn started with this post on still Coviding and attachment theory. We discuss the stinky onion of grief, lost friendships, & values alignment. We get into setting boundaries - are we asking permission instead of actually setting them? Is it effective to appeal to empathy to “make your case” & or is it a waste of spoons? We dive into how difficult it is to make friends as adults. Caryn talks about the Wednesday night peer support group they facilitate & sends out a call to join a cross-generational queer group they want to start! Wanda Belisle (0:26:23) is a registered health coach, dealing with ME/CFS for several years & shares her experience to help people with ME & Long Covid pace. I’m not a client of Wanda’s, but I find her posts helpful, & it's refreshing that when she’s in a flare or crash, she shares it . In the ‘wellness’ space that is rare for fear of diminishing returns on a ‘product.’ We discuss pacing during the holidays. The focus is on parenting, but is relevant to all . Wanda explains how she’s saved spoons by asking herself how she wants to feel, talking as a family about what’s important , & how she reviews that. She offers tips on asking for help, delegating, being your own “Santa” & explaining pacing to family. As a gift, Wanda is sharing a pdf guide: Thriving this Season with ME/CFS and Long Covid for free. You can download it here.  Chimére & Tory Sweeney (0:57:54) joined me for a full-length episode, coming out soon. In this excerpt, we discuss what they have planned for the holidays - or - what they DO NOT have planned.  Kathleen Banks (1:02:35) has been working in public health for about 20 years & while we were having a casual conversation about grief (as you do) she mentioned the concentric circles of grief. We about it & it really helped me understand why I get so annoyed when other people put their grief about my illness back on me. We discuss appealing to empathy again, self-compassion (hello Kristen Neff), & touch on identifying your needs - something we’ll talk about in an episode soon. Notes & links from Kathleen: My recent commentary on research priorities for Long COVID, *note for podcast that all my opinions expressed during our interview are mine & do not represent those of any of my affiliations, organizations or co-authors. “How not to say the wrong thing,” LA Times article on Ring Theory. Mara Glatzel’s work. Care Work: Dreaming Disability Justice by Leah Lakshmi Piepnza-Samarasinha.  Jillian & Natalie ( 1:30:09) are my local long hauler bffs. We discuss how this illness has affected our relationships with family & friends, being a lifeline for each other, our “words” for 2024, spending time together over the holidays, & friends who “get it.”  Lesa Schultz ( 1:52:52) was my first ever podcast guest & is one of my dearest long hauler friends. Lesa has an invitation to everyone to join a Sunday night long covid support group she facilitates, & has an update on what it’s been like moving across the country to be closer to family while still upholding Covid boundaries.  The end (2:08:48) is a gift from Dr. Laurie Nadel, who has been on the podcast. Dr. Nadel is a psychotherapist. She & Lesa have been building a YouTube channel of meditations, & we have an exclusive for your holiday szn. It is 18 minutes long. Like, subscribe, share episodes pls! If you can, leave a review to help get it in more earballs. Listen to the podcast's Long Covid Theme Songs playlist on Spotify. To support this low budget/high love pod, check out my Bonfire shop for LC apparel or my Amazon wishlist. Thank you!

Dr. David Putrino, a leading professor in Rehabilitation at Mount Sinai, discusses the transformative impact of COVID-19 on healthcare. He shares his journey from physical therapy to pioneering research, emphasizing patient-centered innovations. The conversation dives into navigating the complexities of Long Covid, the emotional burden it brings, and the importance of community involvement. He also discusses promising treatments like lumbarkinase and rapamycin, highlighting hope for recovery and the vital connection between music and healing.

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 thinking A 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=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: 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!

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 Dog Find 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/id1648960693 Support 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=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 Thanks again for listening!

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=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 Thanks again for listening!

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=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

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 Parkinson’s. 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!

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!

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 – Find your local Mask Bloc Covid Safe Colorado's website and Instagram Care Work: Dreaming Disability Justice by Leah Lakshmi Piepzna-Samarasinha Katrina'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