A Friend for the Long Haul - A Long Covid Podcast – Détails, épisodes et analyse

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

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

Welcome to season two of A Friend for the Long Haul - A Long Covid Podcast! Thank you for being here! For episode one, join me as I sit down with Katrina and Corey, the founders of Covid Safe Colorado. Covid Safe Colorado is a grassroots organization dedicated to providing high-quality masks to vulnerable communities in the state. Learn about their journey from starting a mask bloc to building a supportive network of volunteers.

In this episode, we delve into the challenges and triumphs of pandemic activism, the importance of community-led initiatives, and the personal impact of long Covid. Katrina and I also share our experiences as "pacing buddies," exploring how mutual support can help navigate the complexities of chronic illness. If you're considering starting a mask bloc on your own, Corey and Katrina share their lessons learned and offer advice and resources to help you get started. Don't miss this conversation about compassion and the power of collective community care. We hope you enjoyed it as much as we did. Don't forget to like, subscribe, and share for more episodes. And if you're feeling extra generous, leave a review. Your support helps me keep bringing you episodes.

Resources mentioned in this episode:

How to Start a Mask Bloc, a collaborative zine by Fight COVID NOLA, Mask Up Pittsburgh, Mask Bloc ATX, World Wide Mask Map, Masks for London, Mask Block UCD, Mask Bloc LA, and Charlotte Mask Bloc, found at Worldwide Mask Bloc Directory – Find your local Mask Bloc Covid Safe Colorado's website and Instagram

Care Work: Dreaming Disability Justice by Leah Lakshmi Piepzna-Samarasinha Katrina's podcast, Dreaming Back to the Earth

Don't forget to check out the podcast's playlist. Each guest is asked to share their long covid theme song: https://open.spotify.com/playlist/3n0GXLFRWqDJyifglNNM4K?si=7399eb50bf8a4a9d

Season 1 Episode 17

In this final episode of the podcast for season 1, I got to chat with Sophie, the founder and Creative Director of Berlin Buyers Club. From their website: "Berlin Buyers Club was born in March 2023 with three goals:

1. To spread awareness of Long Covid and adjacent diseases in a way that is relatable and accessible to younger people, as well as anyone else who feels drawn to the vibe.

2. To encourage people to get involved in advocating for Long Covid & ME/CFS research, treatments, preventatives, and cures.

3. To offer a safe space for people with Long Covid, ME/CFS, and PSSD and their allies.
If you can relate to any of this, if you'd like to help us spread the message, if you're interested in normalizing discussion about Long Covid and the need for treatments and preventatives, if you want clean air... Then you're a part of the Club too! Welcome."

Sophie and I discussed her experience with long covid, how she came to start BBC, how it has impacted her, and yes, we talk about how cool it was to see Violet Affleck wearing some of the Berlin Buyer's Club merch! We talk about what healthcare has looked for each of us in our respective countries of residence, ways to channel our anger, and advocacy efforts. I hope you'll tune in!

Hit subscribe and leave us a rating to let us know what you think! We're here for you, friends. And thanks again to Sophie for joining me!

Be sure to follow me on Instagram at ⁠https://www.instagram.com/afriendforthelonghaul⁠ for updates and unhinged content.

My website is: ⁠https://sites.google.com/view/friendforthelonghaul⁠

Sophie's Instagram is: https://www.instagram.com/sophsoph.psd/

And the Insta for Berlin Buyer's Club is: https://www.instagram.com/berlin_buyers_club/

Don't forget to check out the pod playlist on Spotify: https://open.spotify.com/playlist/3n0GXLFRWqDJyifglNNM4K?si=c5c70f678a7d4d4d

Season 1 Episode 16: Damn it, Amy!

Join me as I chat with Amy, a writer, social worker, long covid & ME/CFS advocate, and the brilliant mind behind The Tonic (https://amythetonic.substack.com/) – a refreshing blend of wellness resources and stories for those battling chronic illness.

In this episode, we discuss:

• How to break free from the achievement trap and find validation on your terms.
• Amy's personal journey with long covid, including her fight for long-term disability.
• The inspiring story behind The Tonic, and how it injects laughter and hope into chronic illness journeys.

Whether you're a long hauler yourself, or supporting someone who is, this episode is for you.

#LongCovid #Hope #ChronicIllness #TheTonic

P.S. Looking for more resources on long covid and ME/CFS? Check out Amy's blog, The Tonic!

Mentioned in this episode:

Amy's HealthRising piece on Long Covid and Disability: https://www.healthrising.org/blog/2023/03/02/my-long-covid-disability-journey/

Pain Free You on YouTube with Dan Buglio: https://www.youtube.com/@PainFreeYou

Amy Hamilton at Core Connections Counseling: https://www.coreconnectionscounselling.com/

Hit subscribe and leave us a rating to let us know what you think! We're here for you, friends. And thanks again to Dr. Laurie Nadel for joining me!

Be sure to follow me on Instagram at ⁠https://www.instagram.com/afriendforthelonghaul⁠ for updates and unhinged content.

My website is: ⁠https://sites.google.com/view/friendforthelonghaul⁠

Don't forget to check out the pod playlist on Spotify: https://open.spotify.com/playlist/3n0GXLFRWqDJyifglNNM4K?si=c5c70f678a7d4d4d

Episode 15: The Five Gifts - Discovering Hope, Healing and Strength When Disaster Strikes

This week on A Friend for the Long Haul, I welcome a fellow traveler on the path of chronic illness! Dr. Laurie Nadel, a renowned journalist and therapist, joins us to share her incredible journey.

Dr. Nadel has battled chronic fatigue syndrome (CFS) and COPD, and understands the physical and emotional toll of long-term illness. We'll delve into her amazing career, her own struggles with chronic illness, trauma, and loss - and her dedication to helping Long Haulers. Some history from Dr. Nadel's website that I think you'll just eat up:

"After an internship with the London Daily Mirror, she worked at Reuters Television in London where she became the first woman news writer. Returning to New York, she became the first woman news writer-producer at ABC News, working with correspondents and cameramen around the world. A member of the Writers Guild of America, Nadel produced news about the Vietnam war and the anti-war movement, Watergate and the Nixon-McGovern presidential election when President Nixon won a second term."

"In 1988, after a long battle with chronic fatigue syndrome, Nadel was laid off while she was medically disabled. As she started to improve with the help of meditation, hypnotherapy and Chinese medicine, she rebooted her journalism career by writing for airline magazines and Men’s Fitness. Around this time, she returned to graduate school to earn two doctorates in psychology and clinical hypnotherapy. These credentials opened the way for her to focus on behavioral health topics and led to her writing several psychology books."

In this episode, you'll learn:

• How Dr. Nadel's experience with CFS shaped her work as a therapist.
• Her unique approach to healing, incorporating elements of psychology, hypnotherapy, and indigenous wisdom.
• The "Five Gifts" from her book, explained as they relate to Long Haulers (she's committed to offering long-term support for women who endure permanent chronic health difficulties since the first wave of COVID in 2020. With Dr. Noah Greenspan’s Pulmonary Wellness Foundation, she helped launch the longest ongoing support program for Long Covid patients.
• Practical tools and strategies for building resilience and finding hope amidst chronic illness

Dr. Laurie also takes us through some ways to trust our bodies and our guts in an effort to find our inner wisdom and inner healer, and shares some of her favorite meditation techniques.

Whether you're a Long Hauler, someone with ME/CFS, or facing any chronic health battle, this episode is a beacon of strength and support.

Don't miss Dr. Laurie Nadel's inspiring story and advice!

P.S. Check out Dr. Laurie Nadel's book, "The Five Gifts," for an "emergency Go-Kit" for your heart and mind. You can find it on Amazon here but she's also written 7 other books!

You can find Dr. Laurie's website at: https://www.laurienadel.com/

On the Services page, you can find a video meditation journey she speaks of in this episode: https://www.laurienadel.com/services-events.html

Dr. Laurie's Reiki and energy healing for animals and their human companions page is: https://animalreikiplanet.com/

Find out more about the Pulmonary Wellness Foundation here (btw, this isn't an ad, they're just good folks!)

This episode also has a special message from Lior Ocean, my friend and guest from episode 5, who is looking to expand their services to long haulers by offering a sliding scale and even free sessions.

Hit subscribe and leave us a rating to let us know what you think! We're here for you, friends. And thanks again to Dr. Laurie Nadel for joining me!

Be sure to follow me on Instagram at ⁠https://www.instagram.com/afriendforthelonghaul⁠ for updates and unhinged content.

My website is: ⁠https://sites.google.com/view/friendforthelonghaul⁠

Don't forget to check out the pod playlist on Spotify: https://open.spotify.com/playlist/3n0GXLFRWqDJyifglNNM4K

Episode 14: I Got Bit by the Zombie and I'm not Telling You

This week's episode of A Friend for the Long Haul - a Podcast for Long Covid Friends features Jacob. Listening to the very beginning, I realized that I refer to Jacob as "him." Their pronouns are they/them, and I'd like to acknowledge that and apologize for making assumptions. YOU KNOW WHAT YOU DO WHEN YOU ASSUME.

I'm just gonna add a list of where you can find them now, because they are lovely and I am an old lady and if my three sons grow up with even half of Jacob's empathy and ability to show compassion to others as well as himself I will have done a good a pretty fine job. They've actually made it really easy: https://jacjack.carrd.co/ has all platforms linked and I'm probably about to copy them.

You'll see their content first on TikTok: https://www.tiktok.com/@midwestsidegunn

I started following Jacob when a few of their videos started making the rounds in the long covid community. Jacob does not have long covid, but received a zine from a friend who does and that zine started making them think about how messed up it sounds. They started learning (imagine, a person not affected by your condition starting to listen and learn about it to protect themself and to protect their community!) and then started becoming more vocal about being covid conscious on social media.

In this episode, we discuss:

• what led them to becoming more vocal about covid
• their pandemic experience
• integrity in the chronic illness and disability space
• tone policing and being Black in the covid conscious community
• the intersection of covid justice/activism & disability justice with all of the other major sociopolitical things happening right now (Palestine, Sudan, Congo, etc)
• Disco and the importance of Donna Summer

and so much more <3

In addition, Jacob made us a disco playlist that I've been bopping around to for about a week and you'll love it. Links below:

Apple Music: https://music.apple.com/us/playlist/disco-innit/pl.u-JPAZZK2IX0ygP4

Spotify: https://open.spotify.com/playlist/0efn9oT1r09C72k7j0yoog?si=854d1adbb0214201

THAT'S RIGHT JACOB IS SO CONSIDERATE THEY TOOK THE TIME TO MAKE THE PLAYLIST ON TWO PLATFORMS BECAUSE YOU MIGHT HAVE PREFERENCES AND THEY UNDERSTAND THAT

Hit subscribe and leave us a rating to let us know what you think! We're here for you, friends.

Be sure to follow me on Instagram at ⁠https://www.instagram.com/afriendforthelonghaul⁠ for updates and unhinged content.

My website is: ⁠https://sites.google.com/view/friendforthelonghaul⁠

Don't forget to check out the pod playlist on Spotify: ⁠https://open.spotify.com/playlist/3n0GXLFRWqDJyifglNNM4K

Mark Your Calendars! The Teal Reveal is Almost Here! ✨

Calling all #chronic illness and #longcovid warriors! Join me and Chimere on this bonus episode of A Friend for the Long Haul as we chat about her upcoming virtual prom, The Teal Reveal, happening in just TWO WEEKS!

The Teal Reveal is more than just a party – it's a celebration of resilience and community. This inclusive event supports a fantastic cause:

• Your ticket purchase helps fund the important documentary, Black and (un)Believed.
• It also provides food, medicine, or supplies to two amazing community members in need.

Here's what you need to know:

• Tickets are on sale now! Get yours at https://www.blackandunbelievedfilm.com/ (don't forget to check your spam folder for your ticket!).

• Kids under 10 are FREE! Bring your whole crew – partners, pets, and all!
• There will be music, prizes, and of course, FUN!

Plus, Chimere shares an update on her powerful film, Black and (un)Believed, and how it's evolved as she's navigated filmmaking. The episode ends with a heartwarming moment as my 6-year-old (who met Chimere when he was only 2!) gets to say hi!

Find Chimmy on Instagram at https://www.instagram.com/chimereladawn/

Episode 13: An Emotion Soup

Ever feel like you get the "you look great!" when you definitely don't feel great? Join me and Amy (https://www.instagram.com/longcovidrockstar/) on this episode of A Friend for the Long Haul as we tackle the frustrating things people say to those with chronic illness and long covid. We get real about the pressure to perform and the emotional toll of "have you tried X?"

But this episode isn't all venting! Amy's a total rockstar when it comes to mindset and pacing, and she shares how she reclaimed enjoyment in her life. We even dive into how she negotiated a return to work on her terms (because boundaries are essential!)

Feeling lost in the shuffle of illness? We talk about the impact of social conditioning and the patriarchy on our self-worth, especially for chronically ill and disabled folks. Amy will leave you with some actionable tips for starting a gratitude practice and reconnecting with the parts of yourself that might feel hidden.

This episode is a must-listen if you struggle with

• Feeling invisible in your illness
• Saying good things about yourself
• Dealing with unsolicited advice
• Reclaiming joy and purpose

Hit subscribe and leave us a rating to let us know what you think! We're here for you, friends.

Be sure to follow me on Instagram at https://www.instagram.com/afriendforthelonghaul for updates and unhinged content.

My website is: https://sites.google.com/view/friendforthelonghaul

Don't forget to check out the pod playlist on Spotify: https://open.spotify.com/playlist/3n0GXLFRWqDJyifglNNM4K

Episode 12: Born to be Horizontal, Forced to be Vertical

Navigating Long Covid in Your Early 20s on A Friend for the Long Haul

This week on A Friend for the Long Haul, I'm joined by Ally, who got hit with covid right before her college graduation, which developed into long covid. We explore the unique challenges of starting a new chapter in your twenties after acquiring a chronic illness.

In this episode, you'll hear:

• How Ally navigates friendships and relationships
• What it was like starting her first job after college with long covid
• Ally's journey with pacing and the importance of mobility aidss
• The emotions of meeting another long hauler for the first time (Chef Taryn of episode 4!)

Plus, we chat about TurnTo, a brand new app designed specifically for people with long covid and ME/CFS!

TurnTo leverages AI to curate personalized daily content, from the latest research breakthroughs to inspiring user stories. Ally shares her experience with working on the development of the app and how it's helped her on her long haul journey. By the way - this is not an ad, the app is free and so useful.

Feeling lost and alone with long covid in your twenties? This episode is for you! Join us for a supportive conversation and discover some tools and resources you may find useful.

#AFriendForTheLongHaul #LongCovidCommunity #ChronicIllnessWarriors

Tune in, and let’s navigate this long haul together.
Don’t forget to subscribe, leave a review, and share this episode with anyone who might benefit from hearing Ally's story.

You can find Ally on Instagram at https://www.instagram.com/livinglongcovid/

Be sure to follow me on Instagram at https://www.instagram.com/afriendforthelonghaul for updates and unhinged content.

My website is: https://sites.google.com/view/friendforthelonghaul

Don't forget to check out the pod playlist on Spotify: https://open.spotify.com/playlist/3n0GXLFRWqDJyifglNNM4K