I AM MADELINE15 Aug 2024

Constituency Appt + GENETIC testing in process

In this episode I speak about today's provincial constituency appointment and a genetics test that is processing. I was very grateful that friend helped me get it AKA paid for it and I'm hoping it will yield some results that will in turn yield some supports from within the British Columbia healthcare system. It's a hail Mary but at the time that the special came up on this full genome testing I was so close to running out of money that I thought if it doesn't come back before I run out of money at the very least maybe it's helps other people after I'm dead. It's so hard when things get that dark. But I'm still here! Thanks to GoFundMe donors and to some help from a friend this summer. The in the episode I talked about a myalgic encephalomyelitis death in the UK via starvation due to lack of medical intervention when her myalgic encephalomyelitis impeded her ability to digest food that went through a coroner's inquest. Maeve Boothby O’Neill After the coroner's inquest https://www.theguardian.com/uk-news/article/2024/aug/09/devon-woman-died-from-malnutrition-due-to-severe-me-coroner-concludes?utm_term=Autofeed&CMP=twt_gu&utm_medium&utm_source=Twitter#Echobox=1723221888 Right after her death https://www.theguardian.com/society/article/2024/aug/10/me-patients-maeve-boothby-o-neill-inquest I also speak about a YouTube episode I did entitled *I'm afraid* https://youtu.be/gdPfr-fCfGo?si=QHHZKMLJH81Kwm_I Since I currently run out of money the end of September Here is the GoFundMe link. If you're able to share it or the podcast link please do. Every little bit helps. Little things are big things!

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Avsnitt(158)

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

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

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

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

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

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

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

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