• A Friend for the Long Haul's 1st Annual Long Covid Sickstravaganza Holiday Episode
    Dec 24 2024
    Welcome to the 1st Annual Long Covid Sickstravaganza Holiday Episode! This episode features contributions from a few different lovely folks: Segment 1 features my 7 year old. We discuss what he really wants for the holidays - which is apparently for me to stop being so hard on myself. Oof.For Segment 2, The Long Covid Choir kindly shared a recording of a holiday song with us, called Alles Schweiget! Included is an introduction from choir director Merel van der Knoop. You can watch a video the choir put together on YouTube. Here are the lyrics in German and English: Alles schweiget, Nachtigallen locken mit süßen Melodien Tränen ins Auge, Schwermut ins Herz. All is Silent All is silent nightingales draw with sweet melodies tears in the eye heaviness in the heart. Music attrib. Haydn/Mozart Photography: Janne Cecilie Bjerkeland Produced: Merel van der KnoopIn Segment 3, I have a nice long chat with Lior Ocean about what a crock new year's resolutions are, and we discuss self compassion and showing ourselves loving kindness in 2025Segment 4 features Joe Glasgow, who contributed a story called If These Pillows Could TalkNina Storey kicked my ass with shares a demo of a new song called Shadows Fall (Love Myself). Nina said: "Let your audience know you inspired me after we spoke after your iron infusion, and every person dealing with a chronic illness and chronic pain or disability inspires this song too. We are all warriors." Lyrics: Shadows Fall (Love Myself) Written by Nina Storey Verse I so long alone surrounded by the noise still on my own scattered through an empty void but get up and I show up cause I've grown up in the dark and I'm bleeding but I'm breathing and I know I'm come so far Chorus shadows fall from yesterday what I've lost is far away where to go when all the love is gone when everyone has walked away and I alone have got to stay I learn to love myself and carry on Verse II take my life in minutes count them each a win when I reach the end of one, then I start to count again so I'll fake it, 'till I make it cause most don't seem to care but I'm ready and I'm clawing my way back for every breath of air Bridge I survived a stormy ride across my soul you can't break me iron veins have made me whole Chorus shadows fall from yesterday what I've lost is far away where to go when all the love is gone when everyone has walked away I alone have got to stay learn to love myself and carry on Thank you all for contributing, and thank you listeners for supporting this endeavor this year! I hope you have a lovely holiday season! To further spread some joy, there's a pretty decent giveaway happening for this special episode! Prizes are: a free month of the Calm app (not sponsored!), two free virtual dog training Sessions from Ray of Lighthouse Dog Training, a copy of Joe Glasgow's new book - Be a Hero, a signed copy of The Five Gifts: Discovering Hope, Healing and Strength when Disaster Strikes from Dr. Laurie Nadel, and a full copy of Chef Taryn of Bloom19's new Spoonie Cookbook! Chef Taryn also created a special holiday recipe for this episode, peppermint patties that are dairy free, gluten free, egg free, and refined sugar free! To enter, comment anything on this episode - also, tell me if you have a dog - or go to the giveaway post on my Instagram and comment, like, share, and tag friends for additional entries. Winners will be drawn on 12/29/2024. 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. If you'd like to support this low budget/high love podcast, you can check out my Bonfire shop for silly long covid apparel or my Amazon wishlist,
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    1 hr and 18 mins
  • Clearing the Airwaves: A Long COVID Conversation with @kd_kinetic
    Dec 17 2024
    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, Featured in BioWorld Med Tech, Teen Vogue, CBS Austin - Mask Bans, CBS Austin - Homeless Camping Ban, Texas Observer, Spectrum Local News, YES! Magazine, 48 Hills, KUT Austin, and Austin American Statesman. Follow Katie on Instagram Follow Clear the Air ATX on Instagram Clear the Air ATX's Linktree 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 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
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    1 hr and 56 mins
  • A Pack Mentality - Long Covid Community and Canines with Ray
    Nov 25 2024
    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 If you’d rather provide mutual aid to Ray directly, here is her Venmo information: https://venmo.com/u/Rayandstormi 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” 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 reindeer All 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 hat Ray 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=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
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    1 hr and 12 mins
  • Season's Grievings and Chronic Feelings - Preparing for the Holidays with Long Covid
    Nov 18 2024
    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!
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    2 hrs and 28 mins
  • Getting to the CoRE of Long Covid with Dr. David Putrino
    Nov 4 2024

    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

    Follow them on Twitter here (yes, I thrive on spite and still call it Twitter): 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

    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=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

    Thank you for listening!

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    1 hr and 6 mins
  • Covid Conscious Community Care featuring JaydoCovid
    Oct 28 2024

    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!

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    1 hr and 40 mins
  • Austin City Limits Our Health: A Long Covid Moving Story with Laura Thomas
    Oct 22 2024

    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!


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    49 mins
  • A Long Covid Crash Course with Lola Germs
    Oct 10 2024

    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!

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    1 hr and 5 mins