Dysautie Hotties

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Hello Hotties! Today's episode is released on what I have heard is

WORLD MENTAL HEALTH DAY

"Lived Experiences Heard: Real Voices, Real Change." - the WHO. No, not that one. this one: https://www.who.int/campaigns/world-mental-health-day

(Though it is true, I do play a mean pinball!)

This episode is a little heavy at times, so be forewarned. There IS a tiny bit of discussion about death...but mostly the theme is GRIEF, and the many forms of how it exists when you or someone you love/care for has a life-altering illness. It could be anything from Chemotherapy-induced nerve pain that makes cooking and cleaning near impossible, or it could be job loss, or it could be losing long time friends when the person you have evolved into is not in alignment with who you were prior to the life changing illness.

Of course, there is always grace and humor when we discuss what life is like as a Dysautie Hottie!

Today's very special guest is the very talented Visual Designer/Developer/Disability Advocate, Erica Hayes.

Erica is not only a fellow AAG patient (among other things) but she is also a mom, and a lover of cats, dogs, and...yes... we both love birds. (thank you Merlin app!) She, her spouse, and family are navigating her AAG journey together, but she also manages to find a way to help others navigate when symptoms allow.

Let's welcome Erica to the show... she will be a frequent guest as our health will allow it!

Here is the link to the book that Erica discusses:

https://www.simonandschuster.com/books/How-to-Be-Sick/Toni-Bernhard/9781614296768?gad_source=1&gad_campaignid=24211144764&gbraid=0AAAAADv-uEnE0xmPxEZNICmtX-dtuClsS&gclid=Cj0KCQjwxKfWBhDkARIsAMKwkNZt3jWoAXNhDDv5Hq9Eq-VLMgnd8ABIQyi4t55ad1Qg_Ybt28hkx1AaApR2EALw_wcB

All music from today's episode was made in real time, by Lishie, with the exception of Lishie's band Trash Signal = "Syncope" - copyright Trash Signal (2025)

as always, Thank you!

Hey! I'd love to hear your thoughts, send me a voice note.

This episode is a light and humorous, yet serious discussion about my experience as a newly immunosuppressed person having just been bitten by a bat or two.

Resources and References include:

Dysatuonomia International - Autoimmune Autonomic Ganglionopathy - presenter: Steven Vernino, MD, PhD:

https://youtu.be/mG3ydQoPRPo?si=KrFGacjYD8YuCvmx

HyperRAB: the Rabies Immune Globulin

https://www.grifols.com/documents/3627767/3632534/ft-hyper-rab-us-en.pdf/f5c9381f-15e2-43fb-98ed-81dfecc2bd6c?t=1553085932000

CDC's Guide to Preventing Rabies from Bats:

https://www.cdc.gov/rabies/prevention/bats.html

Treatments for Myasthenia Gravis:

https://myasthenia.org/myasthenia-gravis-treatments/

Treating patients who have made antibodies to their acetylcholine receptors:

(Use and monitoring of low dose rituximab in myasthenia gravis)

https://pubmed.ncbi.nlm.nih.gov/21071753/

Characterization of ganglionic acetylcholine receptor autoantibodies (useful if you have both mAChR and gAChr antibodies, like I do.)

https://pubmed.ncbi.nlm.nih.gov/18485491/

Stuart Murdoch on ME/CFS:

https://www.youtube.com/watch?v=IMTVqv6rw6c

Music:

background music performed is by

Lishie (Trash Signal) on a Korg Bass Synth, and Stuart Edwards (Shelles, Old Bricks) on Drums.

outro is "Syncope" by Trash Signal

trashsignal.bandcamp.com

https://shelles.bandcamp.com/

Hey! I'd love to hear your thoughts, send me a voice note.

For the first episode, we talk about how to talk about kinds of, and symptoms that can present with, AUTONOMIC DYSFUNCTION... to your friends, family, and providers. Since we are new to podcasting - (Lishie is AuDHD and has sensory difficulties with most podcasts)... we humorously, candidly talk about the future sponsors we'd love to have, whilst sneaking in how we use the products and services from those aforementioned sponsors. All music is by Lishie RN, BSN (aka Nurse Reverb) or Trash Signal. Featured Trash Signal track is "Syncope." (available on all streaming platforms, and bandcamp, too!

trashsignal.bandcamp.com

need a Dysautonomia tee? https://www.bonfire.com/fun-in-autonomic-dysfunction/