Coping, Denial or Both
I AM MADELINE26 Aug 2023

Coping, Denial or Both

Where I attempt to puzzle out explaining some of my coping strategies. Also ombudsman update plus an article that includes me should be coming out soon update. I talk about MS and ME briefly in this ep so here are some links about that: viral origins of myalgic encephalomyelitis, some of the history of its abdication, it's relationships to MS and AIDS and particularly to Epstein-Barr which was the virus that got me https://journals.plos.org/plospathogens/article?id=10.1371/journal.ppat.1011523#ppat.1011523.ref025 And this one draws distinct parallels between MS and ME and shows the seriousness and deadly nature of myalgic encephalomyelitis- Myalgic encephalomyelitis/chronic fatigue syndrome and encephalomyelitis disseminata/multiple sclerosis show remarkable levels of similarity in phenomenology and neuroimmune characteristics | BMC Medicine | Full Text https://bmcmedicine.biomedcentral.com/articles/10.1186/1741-7015-11-205 More info on MS and Epstein-Barr Clonally expanded B cells in multiple sclerosis bind EBV EBNA1 and GlialCAM https://www.nature.com/articles/s41586-022-04432-7 Gfm for those who want it https://gofund.me/cff39173 (Also bear with me guys as I try to find the perfect location for the microphone. I have to play with levels post recording when it turned out it was too close so I hope that's okay. I don't know have the energy or brain power to rerecord. Le sigh. It's hard to have the sound quality at the level that I want it to be while hanging off a cliff by a branch like a cartoon animal trying to be a magical Ted talk to drs, politicians, bureaucrats +now ombudsman, etc while also trying to navigate scarcity and illness. So I appreciate your forbearance💗. )

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Avsnitt(158)

medical instruction REST

medical instruction REST

it won't let me post all of what I posted in the GoFundMe update so here's that link if you want to read the rest ( https://gofund.me/6d981312 )I'm hanging in best I can. But I'm definitely burnt out ...

7 Aug 6min

ADVOCACY

ADVOCACY

where I talk about layers and kinds of advocacy from medical to bureaucratic to systemic. personal advocacy and larger disability and disease advocacy. And also different kinds of advocacy and what I ...

25 Juli 48min

Music Magic

Music Magic

alive in the field episode from the music festival I've been talking about. I did manage to make it well hopefully I can do the whole thing. at least I'm here mid-afternoon on Saturday so I will enjoy...

18 Juli 8min

I'm scared

I'm scared

where I talk about an aha moment around why not being able to pull my brain together as I describe in the previous episode freaked me out so much. Because if I can't be eloquent then that will be a de...

14 Juli 5min

blArgh

blArgh

The perils of tired brain and trying to be at magical Ted talk in a volunteer situation(see my project hail Mary episode). le sigh

14 Juli 4min

my Project Hail Mary

my Project Hail Mary

where I talk about my lived experience life and death against seeming insurmountable odds resonance with the movie Project Hail Mary some of the things I referenced today are the latest GoFundMe updat...

11 Juli 13min

DOCUMENT done! woohoo

DOCUMENT done! woohoo

finally! The document is done. sent to ministers and ministries here in BC and to the same media we sent the press release for the petition presentation. obviously it was sent along with the petition ...

3 Juli 12min

*the DOCUMENT*

*the DOCUMENT*

In the home stretch on this document to go with the petitions to the BC ministers of health, social development of poverty reduction and finance as well as the premier's office But boy is it taking ev...

20 Juni 32min

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