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A Friend for the Long Haul: A Long Covid Podcast
A Friend for the Long Haul
40 episodes
4 days ago
Are you struggling with Long COVID-19, ME/CFS, chronic illness, or disability? "A Friend for the Long Haul" is a Long COVID podcast that aims to be a supportive companion. This podcast offers insights, humor, and shared stories within a community that understands. Each episode features a Long COVID patient or ally to help you feel less isolated, because you are not alone.
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Relationships
Education,
Society & Culture,
Self-Improvement,
Health & Fitness
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All content for A Friend for the Long Haul: A Long Covid Podcast is the property of A Friend for the Long Haul and is served directly from their servers with no modification, redirects, or rehosting. The podcast is not affiliated with or endorsed by Podjoint in any way.
Are you struggling with Long COVID-19, ME/CFS, chronic illness, or disability? "A Friend for the Long Haul" is a Long COVID podcast that aims to be a supportive companion. This podcast offers insights, humor, and shared stories within a community that understands. Each episode features a Long COVID patient or ally to help you feel less isolated, because you are not alone.
Show more...
Relationships
Education,
Society & Culture,
Self-Improvement,
Health & Fitness
Episodes (20/40)
A Friend for the Long Haul: A Long Covid Podcast
This is Your Brain on Long Covid - ADHD, TBI, Anger, and Self-Compassion with Lissy Donovan
Hey, friends! Welcome to season 3, episode 9 of A Friend for the Long Haul - A Long Covid podcast. This is a conversation I needed to have, and I'm so glad Lissy Donovan (my friend and a coach for people with busy brains) was here for it. I dive into my recent discovery of a TBI (Traumatic Brain Injury) I’d been pretending wasn't a thing for years, as well as my later-in-life ADHD diagnosis post-COVID. If you've been listening for a while, you know I don't know how to be angry. We talk about how I'm learning to process and even healthily express anger which is a truly revolutionary and scary idea for me. We also get into activism, self-care, and self-compassion. Lissy shares how she navigates Long COVID and ADHD. Topics we gab about include: ADHD diagnoses and hormonal changes Anger expression and conflict's role in making relationships stronger Music, dance, and well-being Body image, societal pressures, white supremacy, and the broader systems of oppression Engaging in activism while managing chronic illness, disability, and trauma Reflections on personal growth Social media habits Lissy's experience with Long Covid and running her own business Join us as we explore the intersection of ADHD, trauma, and chronic illness. You can find Lissy at https://lissydonovan.com/ as well as Instagram and TikTok. Her YouTube channel is full of longer-form gems that are soooo helpful. If you'd like to support me in my one disabled woman podcasting endeavors, I have an Amazon gift list that is completely unhinged. I also have an Amazon storefront you can use to purchase goods. I also sell long covid tshirts and other products on my Bonfire shop. Over the last 1.5 years, I've built a playlist of my guests long covid theme songs. You can find it here. Please like, subscribe, and share A Friend for the Long Haul! Reviews go a long way to help, too. Thank you!
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1 month ago
1 hour 11 minutes 43 seconds

A Friend for the Long Haul: A Long Covid Podcast
The Importance of Long Covid Allies with Paul Hennessy
I’m having surgery TOMORROW, September 22nd, and could use some support. I have a gift registry set up if you’d like to help me out. It’s truly deeply appreciated. Welcome to season 3, episode 8 of A Friend for the Long Haul - A Long Covid Podcast. This time, I got to gab with Paul Hennessy, who you know as @mixpaulogy on Instagram and @paulypandemic on TikTok. We talked about Paul’s Long Covid advocacy work, including what led him to get involved in 2021, and his work with organizations like Clean Air LA and Mask Together America. We get in to what it’s like to continue to take precautions in a time when very few are, including comments from strangers and how relationships are impacted when “everything is Covid” with you. Paul offers actionable advice for folks interested in being long Covid allies or getting involved in disability justice, and and we discuss the need for local and federal action to address the persistent challenges of ignoring a virus that’s disabled millions of humans worldwide. But it’s not all serious, because I don’t think it could be with us at the mic. Oh! We are joined by two very special guests at the end of the episode, so don’t miss that! Places to find Paul! Instagram: https://www.instagram.com/mixpaulogy/ TikTok: https://www.tiktok.com/@paulypandemic Also, check out Mask Together America, public health advocates who vowed to expose the life-threatening, yet preventable, risks of contracting COVID-19. If you'd like to support this one-disabled-woman-produced podcast, check out my Amazon Storefront. I'll get a few pennies if you purchase your everyday items through the links in my storefront. You can also listen to the ever-growing Long Covid Theme Songs playlist here. Don't forget to like, subscribe, follow, and share A Friend for the Long Haul! 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. Thank you!
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1 month ago
43 minutes 55 seconds

A Friend for the Long Haul: A Long Covid Podcast
Cultivating Community with the Complexities of Chronic Illness and Stress with Steph Fowler, LCPC, CADC

Welcome to Season 3, Episode 7 of A Friend for the Long Haul - A Long Covid Podcast! In this week's conversation, I am joined by Steph Fowler, LCPC, CADC, who you may remember from Season 1, Episode 11. I love this description from the bio on Steph's website: "Other things to know: among my many identities, I am multiply-neurodivergent, chronically ill and disabled (Long COVID ‘20), an INFJ, ex-vangelical, and recovering perfectionist. In The Before Times, I enjoyed kickboxing, running, cosplay, karaoke, travel, cat cafes, and live lit/storytelling. Nowadays I enjoy gardening, nature, writing, photography, LEGO, subversion, and all things macabre." Steph is one of those people who always makes me things about things in a different way, and we wanted to chat about the challenges of building and sustaining community when everyone is navigating different levels of stress, grief, and physical limitations.

You'll hear us discuss:

  • The emotional toll of community splintering within the COVID-conscious and long COVID communities.

  • Practical strategies for emotional management, including the importance of practicing pauses and asking for consent before unloading stress.

  • How to build trust and safety in groups by establishing clear shared values and embracing compassion for others’ different experiences.

  • Navigating relationships and setting boundaries around personal COVID-19 risk and accommodations.

  • Personal reflections on shifting identities, redefining determination, and coping with the profound grief of loss—both of health and relationships.

Places to find Steph!

Substack: https://misfitmentalhealth.substack.com/

Instagram: https://www.instagram.com/misfit.mental.healthTime Magazine: What to Do if Your Doctor Doesn't Take Your Symptoms Seriously

PBS News Weekend: The COVID pandemic's lingering physical and mental toll, five years later

If you'd like to support this one-disabled-woman-produced podcast, check out my Bonfire shop. Items bought in the shop support the renewal of my Zoom license for recording. Many items co-support other chronically ill friends. I also have an  Amazon Storefront and I'll get a few pennies if you purchase your everyday items through the links in my storefront. I also have an Amazon Wishlist of fun treats and practical needs for our family this autumn.

Don't forget to like, subscribe, follow, and share A Friend for the Long Haul! And if you're feeling extra generous, leave a review. Your support helps get this in front of more earballs and helps me...

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2 months ago
1 hour 11 minutes 31 seconds

A Friend for the Long Haul: A Long Covid Podcast
Art & Mind 2025: COVID, Climate, and Our Future with Sista Creatives Rising

Welcome to this bonus episode of A Friend for the Long Haul - A Long Covid Podcast! Season 3, Episode 6 features Claire Jones and Amaranthia Sepia, the mother/daughter duo behind Sista Creatives Rising. The mission of Sista Creatives Rising is "To help creative marginalized women and marginalized genders gain accessibility and visibility in the arts to facilitate personal healing."

In this episode, we discuss:

  • Our experiences with chronic illnesses and disabilities, and their impacts on our personal growth
  • How Claire navigated a cancer diagnosis during the height of a Covid surge
  • Amaranthia's experiences growing up in Japan and moving back to the United States, highlighting a stark difference between the two cultures
  • How past experiences shape parenting styles and the value of creating a supportive environment where children feel safe to make mistakes
  • Generational trauma, patterns, and how they drive us to change
  • The origins of Sista Creatives Rising and Art and Mind, A FREE virtual charitable film & art event for marginalized women and genders
  • Art and Mind 2025: Covid, Climate, and Our Future, which "will focus on these themes and their ongoing effects on BIPOC creatives who are homebound, disabled, and immunocompromised and how it’s affected their art & cultural practices while highlighting Indigenous perspectives such as Native North American & Palestinian experiences with displacement & climate disaster. "
  • The challenges of running a virtual organization, including grant rejections and funding issues
  • Collaboration, community, and accessibility
  • The Sistas Uprising Fund, a charity project to help marginalized women & marginalized genders gain financial support through microgrants, created in memory of Claire's mother

I am very grateful for this conversation and the opportunity to get to know Claire and Amaranthia! I want to again thank both of them for taking the time to chat with me.

Tickets for Art and Mind 2025 will be available on August 21st, and the event will take place on September 25th from 6:30 to 9:30 pm Eastern time.

You can find Sista Creatives Rising

On Instagram: https://www.instagram.com/sistacreativesrising/

YouTube: https://www.youtube.com/@artmindseries9207

and Substack: https://substack.com/@sistacreativesrising

You can also support them via: https://givebutter.com/sistacreativesrising

If you'd like to support this one-disabled-woman-produced podcast, check out my Bonfire apparel shop. Items bought in the shop support the renewal of my Zoom license for recording. Many items co-support other chronically ill friends. I also have an Amazon storefront and I'll get a few pennies if you purchase your everyday items through the links in my...

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2 months ago
1 hour 56 minutes 15 seconds

A Friend for the Long Haul: A Long Covid Podcast
Say “I Do” to Disability Justice: Mask Rights, Covid-Safer Weddings, and Chuck’s Advocacy

Welcome to season 3, episode 5 of A Friend for the Long Haul - A Long Covid Podcast! In this episode, I talk to our friend, Chuck, known as @whatexactlyisupchuck on social media. We dive into the politics of protection, the power of community care, and how Chuck planned a Covid-safer wedding in a world that often forgets the chronically ill. Chuck shares her experience navigating disability justice and mask advocacy in Texas. From confronting anti-mask legislation to celebrating love safely, this conversation is a heartfelt reminder that accessibility is love in action

Topics include:

  • Disability justice and chronic illness
  • Covid-safer wedding planning
  • Mask rights and Chuck's advocacy in the Texas legislature
  • Community support, specifically a love fest for Tara Whitney, and grief
  • Hard-hitting topics like getting dumped by your hairdresser
  • Chuck's tips for what to look for in a therapist


You can find Chuck on TikTok and Instagram.Chuck is also on Substack.

If you haven't checked out Chuck's shame-free Covid guides, you can access them here on her website.

If you'd like to support this one-disabled-woman-produced podcast, check out my Bonfire apparel shop. Items bought in the shop support the renewal of my Zoom license for recording. Many items co-support other chronically ill friends. I also have an  Amazon storefront and I'll get a few pennies if you purchase your everyday items through the links in my storefront. I also have an Amazon Wishlist that contains things that would help our low spoons house out this back to school fall season.

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. Thank you!

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3 months ago
1 hour 2 minutes 48 seconds

A Friend for the Long Haul: A Long Covid Podcast
Tapping into Dreams, Ancestors, & Consciousness: A Conversation about Chronic Illness and Intuition with Katrina Dreamer

This episode could also be titled, "A Capricorn & a Pisces Walk Into a Podcast." In season 3, episode 4 of A Friend for the Long Haul - A Long Covid Podcast, I welcome back my friend and pacing buddy, Katrina Dreamer. Katrina was a guest on season 2, where we discussed how they kicked off Covid Safe Colorado, our local mask bloc. This is a very different conversation! In this episode, we discuss:

  • Katrina's plans to resume their dream and energy work, sharing their experience of running a 6-week long Social Justice Dreaming workshop, where they work with participants learning to trust their intuition and how they can use that to guide their activism
  • Their experience with dreamwork, including how it manifested in their childhood, and their professional experiences
  • Lucid dreaming, how factors like medications, chronic illness, PTSD, and inflammation can affect dream patterns
  • Whether Beth might be astral projecting in her sleep, and whether she is clairaudient
  • Dream journaling and ancestral work
  • The launch of Katrina's new website and offerings of intuitive readings and energy healings
  • How they protect their energy doing these readings
  • Beth's newest diagnosis of a midbrain traumatic brain injury caused by neuroinflammation from Covid-19
  • How challenging experiences have led to a greater sense of self-worth for both of us
  • Katrina's webtoon, Chaotic Good and the Banned Bookmobile," which features covid conscious, queer and trans high school characters who rally around their librarian who is circulating banned books
  • Our year of being pacing buddies, using a shared Google spreadsheet
  • There's a lot of giggling about Pedro Pascal
  • Celebrities we've met and what they smelled like

You can find out more about Katrina and their offerings at www.katrinadreamer.com! The next cohort of Social Justice Dreaming begins on August 8th. Contact Katrina to find out more!

Katrina's Instagram: https://www.instagram.com/katrinadreamer

And Bluesky.

Katrina's podcast, Dreaming Back to the Earth

And the cartoon, Chaotic Good and the Banned Bookmobile, is available on Webtoon! Sarah Steinberg is the illustrator.

⁠If you'd like your own copy of our pacing spreadsheet, here's one you can duplicate! Please don't use this copy!

In this episode, we also chat about our friends Lissy and Lior. Lissy will be on an upcoming episode, but she is a coach who blends neuroscience-backed strategies, compassionate support, and her own lived experience with ADHD in her approach. Lior Ocean is a queer collage...

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3 months ago
2 hours 3 minutes 36 seconds

A Friend for the Long Haul: A Long Covid Podcast
Part 2 of Microphones, Masks, and Music: Navigating Long COVID and Identity with Nina Storey

If you'd like to support this one-disabled-woman-produced podcast, check out my ⁠Bonfire site for silly long covid apparel⁠. Items bought in the shop support the renewal of my Zoom license for recording. Many items co-support other chronically ill friends. I also have an ⁠Amazon wishlist ⁠and ⁠Storefront⁠. I'll get a few pennies if you purchase your everyday items through the links in my storefront. You can also Venmo me @afriend4thelonghaul.

Welcome to another episode of A Friend for the Long Haul: A Long Covid Podcast! This is part 2 of my conversation with Nina Storey. In this episode, we talk about:

  • Nina's plans for the future
  • Getting dogs while dealing with long Covid
  • Cute aggression
  • Functioning in public around people when you're used to being at home
  • How it feels like long Covid has made pre-existing sensitivities more intense
  • Where all the lip balms and hair ties go
  • Medical gaslighting
  • Nina's attempts to soothe her nervous system and how singing helps
  • Her experience getting the Novavax booster
  • The fact that we don't know how to feel anger
  • My travel tips for Las Vegas
  • Nina's dog's autoimmune issues


Nina has shared a link to her song, Shadows Fall, which can be listened to on Even. Even is a new streaming platform she's using for her music. The model is pay what you can, and the funds go to artists. She says this about the release: "I wrote this song (which is still in demo form) about living with a chronic illness and how sometimes we have to be our own biggest champions. I got Long Covid after initially being infected in early 2020, and I have to say the silver lining has been meeting some extraordinary warriors in the disability community. So this song is dedicated to them and to any person facing health challenges. I see you. ✊🏼💕🙏🏼🙌🏼🎉"

You can find Nina and tour information on her ⁠website⁠, and on ⁠Instagram⁠. She is published in ⁠The Long Covid Reader⁠, and her comedy writing is at ⁠https://strangelyoptimistic.com/⁠.  If you're interested in Nina's Singing To Improve Health or Vocal Classes for Beginners to Professionals workshops, email theninastorey@gmail.com. Mention the podcast for 20% off the regular price! 

Please share A Friend for the Long Haul. If you're feeling 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.

Disclaimers etc: The information provided in this podcast is for informational and educational purposes only and is not medical advice. The views and opinions expressed by the host and guests are their own and do not necessarily reflect those of the podcast producers, sponsors, or affiliated organizations. Or like, friends? Family? Anyone. This podcast does not provide medical diagnosis, treatment, or

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4 months ago
47 minutes 49 seconds

A Friend for the Long Haul: A Long Covid Podcast
Microphones, Masks, and Music: Navigating Long COVID and Identity with Nina Storey

If you'd like to support this one-woman-produced podcast, check out my ⁠Bonfire site for silly long covid apparel⁠. Items bought in the shop support the renewal of my Zoom license for recording. Many items co-support other chronically ill friends. I also have an ⁠Amazon wishlist ⁠and ⁠Storefront⁠. I'll get a few pennies if you purchase your everyday items through the links in my storefront. You can also Venmo me @afriend4thelonghaul. ---Welcome to Season 3, Episode 3 of A Friend for the Long Haul - A Long COVID Podcast! I got to sit down and talk with my dear friend, Grammy-nominated artist, and incredibly talented human, Nina Storey. Nina’s website highlights her amazing career:“Nina Storey has been making waves, having opened for other powerhouse female performers like Sara Bareilles, Rachel Platten, Milck, and Hailey Reinhart, as well as performing in numerous international festivals, such as the Montreal Jazz Festival and the New Orleans JazzFest. People Magazine wrote, “With a voice like hers, pyrotechnics are redundant.”. 

This conversation was just shy of two hours, so I split it up into 2 episodes. Part 2 will be released on 6/30. In part 1, we discuss Long COVID's impact on Nina’s creativity, songwriting process, and career, including lost work and venue discrimination, emotional processing, grief, and the nervous system.You can find Nina and tour information on her ⁠website⁠, and on ⁠Instagram⁠. She is published in ⁠The Long Covid Reader⁠, and her comedy writing is at ⁠https://strangelyoptimistic.com/⁠.  If you're interested in Nina's Singing To Improve Health or Vocal Classes for Beginners to Professionals workshops, email theninastorey@gmail.com. Mention the podcast for 20% off the regular price! She will soon be using a new platform, EVEN, that pays artists. Despite millions of streams of her music, Nina says that Spotify has never paid her a dime. The EVEN model is pay what you can. "It's like Bandcamp and Patreon had a baby." You can also send her a tip via Venmo: @Nina-Storey.Nina shared that the clinic in Sedona she has been working with for her Long Covid symptoms is remote and their website is: mybiohack.com. I have not used the clinic. All information is Nina's anecdotal experience. The clinic is not endorsed by the pod, nor is the pod sponsored by the clinic. Neither is Nina.

Please share A Friend for the Long Haul. If you're feeling 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.

Disclaimers etc: The information provided in this podcast is for informational and educational purposes only and is not medical advice. The views and opinions expressed by the host and guests are their own and do not necessarily reflect those of the podcast producers, sponsors, or affiliated organizations. Or like, friends? Family? Anyone. This podcast does not provide medical diagnosis,...

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4 months ago
47 minutes 21 seconds

A Friend for the Long Haul: A Long Covid Podcast
Love in the Time of Long COVID - Chimére and Tory Sweeney

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 my ⁠Bonfire shop⁠, where I create and sell long Covid items (shirts, totes, hats, etc) that reflect my dark sense of humor coping mechanism.

---

In this episode of A Friend for the Long Haul – A Long COVID Podcast, we dive into love, relationships, and resilience in the face of chronic illness. I sit down with Chimére Sweeney, a Long COVID activist, writer, and retired educator, alongside her husband, Tory Sweeney, to discuss their relationship and journey together.

Chimére founded The Black Long COVID Experience, an initiative dedicated to amplifying Black Long COVID stories, advocating for equitable healthcare, and supporting disability access in Black communities. She and Tory met in college and reconnected after Chimére became ill, and their story sheds light on the emotional, social, and practical realities of navigating love and disability.

We explore:💜 How childhood relationship models shape adult connection💜 Reconnecting and finding love despite chronic illness challenges💜 Navigating intimacy, disability, and Long COVID’s impact on relationships💜 Advocacy, resilience, and pushing for equity in medical care

🚨 Content note: We discuss sex and intimacy with chronic illness, interabled relationships, and mental health topics including suicidal ideation.

This episode was recorded in October, and I want to send a huge thank you to Chimére and Tory for their patience, wisdom, and honesty.

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

The information provided in this podcast is for informational and educational purposes only and should not be considered medical advice. The views and opinions expressed by the host and guests are their own and do not necessarily reflect those of the podcast producers, sponsors, or affiliated organizations. Or like, friends? Family? Anyone.

This podcast does not provide medical diagnosis, treatment, or professional healthcare services. If you have any concerns regarding your health or medical condition, please consult a qualified healthcare provider. Never disregard professional medical advice or delay seeking treatment based on information heard in this podcast. Please don't compare yourself to someone else you hear, either. Our illnesses are highly individualized and what works for one person may not work for you.

While we strive to provide accurate...

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5 months ago
1 hour 42 minutes 49 seconds

A Friend for the Long Haul: A Long Covid Podcast
Too Flared to Funk - A Long Covid Conversation with Caryn Zaner, PsyD

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.--

Welcome to Season 3 of A Friend for the Long Haul! In this episode, I twith Caryn Zaner, PsyD, a Clinical Psychologist based in Oregon specializing in anxiety, identity development, values work, and interpersonal group therapy. Caryn (they/none) provides tele-therapy for adults 18+ and shares their personal experience navigating Long Covid.

Topics covered include:✅ Caryn’s journey with Long Covid and the support group they founded
✅ People-pleasing, grief, coping mechanisms, and emotions
✅ Perfectionism, social media pressures, and self-trust
✅ Listening to your body and intuition when it feels unfamiliar

✅ Comorbidities, chronic illness, and shared experiences

🔔 Content Warning: From 59:45 - 1:14:05, we discuss:

  • GLP-1 medications for Long Covid, including Caryn’s experience with tirzepatide
  • Strength training, weight lifting, body image, and off-label medication access

If you prefer to skip this section, jump to 1:14:05, where we wrap up with our signature three questions.

Other things mentioned in this episode

My Too Flared to Funk fake band tee shirt for The Social Distanced's "Survive 2025" World Tour.

You can find Caryn on Instagram

Felt Not Fixed: https://www.instagram.com/felt.not.fixed/

Therapy for the Apocalypse: https://www.instagram.com/therapy.for.the.apocalypse/

Caryn's website

https://www.carynzanerpsyd.com/

The post that led me to Caryn: Attachment Theory and Still Coviding

Book: Lifting Heavy Things by Laura Khoudari

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: Show more...

5 months ago
1 hour 22 minutes 29 seconds

A Friend for the Long Haul: A Long Covid Podcast
A Friend for the Long Haul's 1st Annual Long Covid Sickstravaganza Holiday Episode

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.

---

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.
  • In Segment 3, I have a chat with Lior Ocean about what a crock new year's resolutions are, and we discuss self compassion and showing ourselves loving kindness in 2025
  • Segment 4 features Joe Glasgow, who contributed a story called If These Pillows Could Talk
  • Nina 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...

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10 months ago
1 hour 18 minutes 17 seconds

A Friend for the Long Haul: A Long Covid Podcast
Clearing the Airwaves: A Long COVID Conversation with @kd_kinetic

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.

---

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, Show more...

11 months ago
1 hour 55 minutes 43 seconds

A Friend for the Long Haul: A Long Covid Podcast
A Pack Mentality - Long Covid Community and Canines with Ray

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_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 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: Show more...

11 months ago
1 hour 11 minutes 36 seconds

A Friend for the Long Haul: A Long Covid Podcast
Season's Grievings and Chronic Feelings - Preparing for the Holidays with Long Covid

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 (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!

  2. 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. 

  3. 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. 

  4. 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. Show more...

11 months ago
2 hours 28 minutes 25 seconds

A Friend for the Long Haul: A Long Covid Podcast
Getting to the CoRE of Long Covid with Dr. David Putrino

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!

Show more...
1 year ago
1 hour 6 minutes 15 seconds

A Friend for the Long Haul: A Long Covid Podcast
Covid Conscious Community Care featuring JaydoCovid

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!

Show more...
1 year ago
1 hour 39 minutes 38 seconds

A Friend for the Long Haul: A Long Covid Podcast
Austin City Limits Our Health: A Long Covid Moving Story with Laura Thomas

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!


Show more...
1 year ago
48 minutes 52 seconds

A Friend for the Long Haul: A Long Covid Podcast
A Long Covid Crash Course with Lola Germs

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

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1 year ago
1 hour 4 minutes 33 seconds

A Friend for the Long Haul: A Long Covid Podcast
Finding Your Voice Again with the Long Covid Choir Featuring Merel and JC

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


Show more...
1 year ago
1 hour 11 minutes 13 seconds

A Friend for the Long Haul: A Long Covid Podcast
Who Do You TurnTo (Cerebral Palsy, Long Covid, ME/CFS, and Parkinson’s) with Jessica London

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!

Show more...
1 year ago
38 minutes 31 seconds

A Friend for the Long Haul: A Long Covid Podcast
Are you struggling with Long COVID-19, ME/CFS, chronic illness, or disability? "A Friend for the Long Haul" is a Long COVID podcast that aims to be a supportive companion. This podcast offers insights, humor, and shared stories within a community that understands. Each episode features a Long COVID patient or ally to help you feel less isolated, because you are not alone.