I AM MADELINE

where I talk about my Halloween plans and the push me pull you that happens between something that is critical to filling my cup AKA getting to dress up and connect with friends and so and reminding me why I'm fighting. however that's in contrast all of the difficulty that I'm facing health-wise and survival-wise and advocacy-wise and even health issues caused by problematic landlord in own apartm...

a month away from running out of GoFundMe. at least that's the amount of money I for sure know gets me to mid-november. I don't know if I can stretch it further especially as I'm still bouncing back from the scooter breaking down and me ending up back on intravenous. side effect seems to be nightmares and in this case apocalypse nightmares. not for the first time but for the first time since Augus...

where I talk about the push me pull you of me meaning emotional balance versus Health balance and struggling of course with financial deficits that make both of those hard. and then roadblocking all of it is this current provincial election

The perils of attempting to mask how sick I am and how scared I am about it but at the same time needing to be able to compartmentalize there's a bright light though. we (myself plus two wonderful volunteers) made some bouquets for a Truth and reconciliation celebration. I'll share a pic. energy I shouldn't have spent but in the face of melting down it seems it was extra important because I probab...

it just realized I didn't really explain in this episode what I mean by healing crisis. for me it's been when a treatment makes some symptoms worse but ultimately improves everything. things get a little bit worse before they get a whole bunch better. sometimes when I give my body the things it needs it kind of rushes to course correct things and that can be exhausting. in today's case made the ma...

where I talk about masking pain and fear. what masking is how it works. how it can trigger nightmares as it has done this evening. and I talk about how the death of my mobility scooter a couple of weeks ago is throwing me off a mitochondrial deterioration cliff I also talk about how I amal massively deteriorating and that is definitely raising my fear levels as I will run out of GoFundMe money sup...

I was already thinking about Grace but then rewatching the documentary #YOU ARE HERE: A COME FROM AWAY STORY about the planes that landed in gander Newfoundland on September 11th. Being from Newfoundland myself it brought it home even more. and if you're watching it thinking wow that can't be real, that is exactly how newfoundlanders are! every time I watch that documentary I nod and think yup, th...

I'm back . my August hiatus from advocacy (because I was starting to melt down out of the pressure of a difficulty coming from so many angles) is over. although it wasn't a hiatus from a whole bunch of other things that I'm arm wrestling. which I talk about in today's episode. I'm posting a link to the op-ed since I talk about it in this episode and we may have some listeners who hadn't had a chan...

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 between fighting for minimal supports and doing larger advocacy. Medically advised to take a break in August. Although it's a little more like medically demanded truthfully. Hard to step back from ad...

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 have learned from other kinds of advocacy in regards to my advocacy

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 what I can. But melancholy does tend to intrude. And I talk about what that's like. How the intensity and severity of difficulty of what I'm going through intrudes on even magical moments and events...

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 death sentence for me. I can't be a magical TED talk If and when the government speaks to me if and when any journalists speak to me then I have no shot at all of survival

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

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 update https://gofund.me/6d981312 and THE DOCUMENT https://docs.google.com/document/d/19W73z4kQrQydqGEkndAyF87t33BBpFXHnEwNVxc75b4/edit?usp=drivesdk

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 with his 1,451 signatures and various supporting documents. I also posted THE DOCUMENT online so everyone could have access to it especially if I don't survive https://docs.google.com/document/d/19W73...

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 everything out of me. hopefully I can get somebody to do one last look over before I send it. I'm crossing my fingers that's before Wednesday. Cuz I really needed to get sent off. GoFundMe money only fo...

where I document what happened this week. And what it's like to just try to deal with what a euphemistically called brain fog. It's a brutality of tired brain that it's hard to convey.

This is my 4th attempt to try to explain the measure of extra crunchy hard I've been experiencing right now. The best way I know to describe the extremity of overwhelm and difficulty coming at me from all directions is claustrophobia. Disability claustrophobia is what I've been calling it but nobody seems to know what I mean by that. So for the fourth time I'm trying to explain. But it seems like...

Because of the amazing efforts of my friend and the GoFundMe she set up to have my apartment deep cleaned We started today! So I thought I would document that for the donators to that particular gfm. But I also thought regular listeners and donators to my GoFundMe for the treatments that keep me alive would like to hear about it. Especially how it is such a critical support. And also some of the i...

in which I grind away trying to get things done and the system grinds on me slowly destroying me In spite of my best efforts to wrangle them to logic. I'm sorry I don't have the brain power to include the links I talk about. I'll try to add those later

Update where you get a case in point of why it is bad bad baddy bad bad to work outside your energy envelope and when you have a long viral ME Things I mention Gfm https://gofund.me/6d981312 Petition https://bit.ly/Marcia_petition Email campaign CTV Template https://docs.google.com/document/d/1VD2zqOKxcQp7SUP06mY8slZlH1sXkKHKVPV0IfLo-uI/edit?usp=sharing

mini episode where I give you a few little snippets of some good things among all of the ongoing Herculean rough and tough things photo is of 12 little bouquets waiting to be given out for plant distribution

documenting yet another instance of when I go out of my way to double check on the some sort of medical provider and get told incorrect information which ultimately causes me to hemorrhage energy

where I'm thinking I'm going to have to do different strategy in really start getting a public officials to understand that if they are thinking that stonewalling me and waiting for me to die will make the problem go away. that it isn't just horrifying it isn't true. absolutely things will go terribly for them if I die. at some point somebody's going to cudgel them with my story. And truthfully if...

where I talk about the push me pull you of my mitochondria requiring rest and any hope of survival by getting governmental change or enough GoFundMe to stay alive being about me doing advocacy and on top of all of that the day-to-day living things of housekeeping and going to treatments. It's all more energy I have and yet it all needs to be done. And trying to navigate the competing needs of thes...