A Friend for the Long Haul - A Long Covid Podcast

Welcome to season 2 episode 12 of A Friend for the Long Haul - A Long COVID Podcast! This week's guest is Katie Drackert, who most of you will know as @kd_kinetic. Katie is the founder of Clear the Air ATX, a volunteer-led, community resource library that lends out air purifiers and other COVID mitigation tools for free to artists, musicians, and independent event producers in Austin, Texas - where I lived for many years and sadly had to leave due to my COVID experience. In the pre-rona days, Katie primarily worked full time as a performance artist. When Omicron hit, things changed. In this episode, we discuss our personal experiences with chronic health issues, including long COVID, and the challenges we face managing our symptoms while advocating for ourselves and others. We share our experiences with medical treatments, their emotional impacts, and the importance of community support and self-care. The conversation also touches on our backgrounds - which are really similar despite our age difference (I am an old) as well as our many shared interests, and future plans for advocacy work and creative projects that we are both plotting. By the end of this episode, I became fully obsessed with Katie, and I think you will, too! You can find out more about Katie's advocacy work in so many places! Check out: Co-created a Zine with The Sick Times [https://thesicktimes.org/2024/12/02/special-edition-zine-one-year-of-the-sick-times/], Featured in  BioWorld Med Tech [https://www.bioworld.com/articles/696414-us-fda-turns-to-patients-to-deepen-understanding-of-long-covid?v=preview], Teen Vogue [https://www.teenvogue.com/story/clean-air-club-organizing-covid-safer-shows], CBS Austin - Mask Bans [https://cbsaustin.com/news/local/lawmakers-consider-banning-masks-at-protests], CBS Austin - Homeless Camping Ban [https://cbsaustin.com/news/local/homeless-camping-ban-could-be-on-austins-may-ballot], Texas Observer [https://www.texasobserver.org/long-covid-texas-clearing-the-air/], Spectrum Local News [https://spectrumlocalnews.com/tx/austin/news/2020/11/11/austin-artist-reacts-to-pfizer-vaccine-progress], YES! Magazine [https://www.yesmagazine.org/issue/access/2024/05/23/reclaiming-our-air], 48 Hills [https://48hills.org/2024/10/opinion-is-it-time-for-an-act-up-for-long-covid/], KUT Austin [https://www.kut.org/austin/2020-08-13/austin-cuts-and-reinvests-5-percent-of-police-budget-promises-more-changes-over-the-next-year], and Austin American Statesman. [https://docs.google.com/document/d/1Tnr60rn4lQYQpkAv21Q6wgpRBrnJNVjT3jP9xApYvAo/edit?usp=sharing] Follow Katie on Instagram [https://www.instagram.com/kd_kinetic/] Follow Clear the Air ATX on Instagram [https://www.instagram.com/cleartheair.atx/] Clear the Air ATX's Linktree [https://linktr.ee/clear.the.air.atx?fbclid=PAZXh0bgNhZW0CMTEAAaYvxje9MZq-mVJdbGYdvG2phCWYH4mM08IY_wkShm7uF-D6OWnoXpP2stI_aem_tshX9ZWqHNuYwlX1EVeb7w]is full of so many resources and ways you can donate and support the org! 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 [https://open.spotify.com/playlist/3n0GXLFRWqDJyifglNNM4K] 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/ [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 [https://www.amazon.com/hz/wishlist/ls/3MYBB5G0P7YUD?ref_=wl_share]

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 was one of the first long haulers I met when I made my original account back in Sept 2020. We’ve stayed in touch ever since, and I really enjoyed getting the opportunity to chat with her. Ray is a registered nurse and a dog trainer. In our conversation, we discuss her experience, including getting diagnosed with Trigeminal neuralgia (TN) is a chronic pain disorder that causes sudden, severe facial pain. It's also known as tic douloureux, Fothergill disease, or trifacial neuralgia.TN is a type of neuropathic pain that affects the trigeminal nerve, which is responsible for feeling and movement in the face, and is widely known to be one of the most painful conditions you can get. Ray shares the story of her brain surgery to help with TN, her long covid story, and we chat about 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_link [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_link] If you’d rather provide mutual aid to Ray directly, here is her Venmo information: https://venmo.com/u/Rayandstormi [https://venmo.com/u/Rayandstormi] https://www.instagram.com/lighthouse_dogs/ https://www.tiktok.com/@lighthousedogs I’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” [https://www.bonfire.com/happy-paw-lidays-6/] 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 [https://www.bonfire.com/all-i-want-for-christmas-shirt/] design 1 features Santa’s sleigh and reindeer All I want for Christmas is a Cure for Long Covid design 2 [https://www.bonfire.com/all-i-want-for-christmas-sloth-tee/]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” [https://www.bonfire.com/i-survived-another-year-1/] features a sausage dog with pink presents and a pink hat Ray also inspired the design of a shirt that says “Yes, I’ve tried yoga [https://www.bonfire.com/yes-i8217ve-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/ [https://www.instagram.com/rayandstormi/] And on TikTok here: https://www.tiktok.com/@rayandstormi [https://www.tiktok.com/@rayandstormi]  This video helps tell Ray’s covid story: https://www.tiktok.com/@rayandstormi/video/7144530664161889578 [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=7948dbf2222c4392 [https://open.spotify.com/playlist/3n0GXLFRWqDJyifglNNM4K] 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/ [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 [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! 1. Caryn Zaner [https://www.carynzanerpsyd.com/] (0:01:01) is a clinical psychologist specializing in helping folks with identity & values alignment, anxiety, & group therapy. Find their professional Instagram account here [https://www.instagram.com/therapy.for.the.apocalypse/]. My obsession with Caryn started with this post on still Coviding and attachment theory [https://www.instagram.com/p/C-PMNHzOLQr/?img_index=1]. 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 [https://www.instagram.com/therapy.for.the.apocalypse/]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! 2. Wanda Belisle [https://www.wandabelisle.com/] (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 [https://drive.google.com/file/d/1OsyZ5ZSj_wygplBxPdkVSP6ZTJUVfH_S/view?usp=sharing].  3. Chimére [https://www.blacklongcovidexperience.com/]& 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.  4. Kathleen Banks [https://www.instagram.com/banks_kp22/] (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 [https://self-compassion.org/]), & 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 [https://www.sciencedirect.com/science/article/pii/S0092867424010298], *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,” [https://www.latimes.com/nation/la-oe-0407-silk-ring-theory-20130407-story.html] LA Times article on Ring Theory. Mara Glatzel’ [https://www.instagram.com/maraglatzel/]s work [https://maraglatzel.com/]. Care Work: Dreaming Disability Justice [https://bookshop.org/p/books/care-work-dreaming-disability-justice-leah-lakshmi-piepzna-samarasinha/16603798] by Leah Lakshmi Piepnza-Samarasinha [https://www.instagram.com/thellpsx/].  5. Jillian [https://www.instagram.com/_ill.af_/]& Natalie [https://www.instagram.com/djnattienoods/]( 1:30:09) are my local long hauler bffs. We discuss how this illness has affected [https://illaftoday.substack.com/] 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.”  6. Lesa Schultz [https://lesaschultz.substack.com/] ( 1:52:52) was my first ever podcast guest [https://spotifycreators-web.app.link/e/37hwfFJPEOb] & is one of my dearest long hauler friends [https://www.instagram.com/lesaschultz143/]. Lesa has an invitation to everyone to join a Sunday night long covid support group [https://pulmonarywellness.org/event/your-bestest-breathing-techniques-eva/] 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.  7. The end (2:08:48) is a gift from Dr. Laurie Nadel, [https://www.laurienadel.com/] who has been on the podcast [https://spotifycreators-web.app.link/e/5Yfgj5RPEOb]. Dr. Nadel is a psychotherapist [https://www.instagram.com/laurienadel/]. She & Lesa have been building a YouTube channel of meditations [https://www.youtube.com/@Dr.LaurieNadelJourneys], & 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 [https://open.spotify.com/playlist/3n0GXLFRWqDJyifglNNM4K]. To support this low budget/high love pod, check out my Bonfire shop [https://www.bonfire.com/store/a-friend-for-the-long-haul/%E2%81%A0]for LC apparel or my Amazon wishlist [https://www.amazon.com/hz/wishlist/ls/3MYBB5G0P7YUD?ref_=wl_share%E2%81%A0]. Thank you!

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 we’ve aged about 10 years since March 2020), and how the work they did early on influenced their response when patients weren’t 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 “will you adopt me” and my question which was, “how do I set up a PO Box in New York so I can come to the clinic?” 🤣 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 Morrisette’s “Ironic” 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 [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/coresinai [https://x.com/coresinai] The 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 [https://www.youtube.com/@coresinai] And, of course, they're on Insta: https://www.instagram.com/coresinai/ [https://www.instagram.com/coresinai/] You can follow Dr. Putrino on Twitter: https://x.com/PutrinoLab [https://x.com/PutrinoLab] and Instagram: https://www.instagram.com/putrino_lab/ [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=7948dbf2222c4392 [https://open.spotify.com/playlist/3n0GXLFRWqDJyifglNNM4K] 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/ [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 [https://www.amazon.com/hz/wishlist/ls/3MYBB5G0P7YUD?ref_=wl_share] Thank you for listening!

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__/ [https://www.instagram.com/decolonize__/] and ShiShi Rose https://www.instagram.com/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 [https://www.tiktok.com/@JaydoCovid] and on Instagram at: https://www.instagram.com/jaydocovid/ [https://www.instagram.com/jaydocovid/] Here is his linktree [https://linktr.ee/JaydoCovid?fbclid=PAZXh0bgNhZW0CMTEAAaZvEofkw9vaUAH1aMGLI7nEi3chFP8Du5iOGePxQdMm6wTwLAFVI_VV_7M_aem_eEoe-3y0ZrmGN6MH2_-rlg] and his YouTube channels: https://www.youtube.com/@JaydoCovid [https://www.youtube.com/@JaydoCovid] https://www.youtube.com/@jaydomusic [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 [https://open.spotify.com/playlist/3n0GXLFRWqDJyifglNNM4K] 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/ [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 [https://www.amazon.com/hz/wishlist/ls/3MYBB5G0P7YUD?ref_=wl_share] Thanks again for listening!