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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 probably wouldn't have rebalanced as quickly had I not done that purpose driven connection activity

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 mast cell activation a tiny bit worse and then a whole bunch better. it's not fixed, we're not getting it fixed, until we get me on the angioedema antihistamine and get the downstairs ductwork sorted and get me back on either one dose of paxlovid or some of the drugs from the anti Epstein bar protocols from the Australian Ms studies. that's what it would take to roll back my deterioration and stabilize me. but I need to pull together the energy to pick back up the fight. right now I'm in survival mode particularly until we get me a functioning mobility scooter again. of course that's a huge part of restabilizing me because that's a huge part of why I suddenly fell apart so hard

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 super fast if I end up permanently back on the intravenous. I booked in for an appointment for one with the hopes of restabilizing me. but if being outside my energy envelope because of lack of mobility scooter has once again caused me to have reduced glutathione production or worse I have stopped producing it at all. well, that's a death sentence. because the current GoFundMe money is not going to get me very far. and between inflation and the tariff situation and no news publication on The horizon to tell my story, the GoFundMe has been very quiet. which is frustrating because 10,000 people donating $5 would get me restabilized and give me time and energy to keep at the system. to keep advocating. to keep fighting but time is what I do not have

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, that's what it's like where I grew up! and it definitely is an act of Grace and expression of the good in the world. which I definitely need to remember right now GoFundMe https://gofund.me/6d981312 #Canada #Newfoundland #September11th #Grace #disability #MyalgicE #LONGCOVID #ganderNewfoundland

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 chance to read it. and next episode I'm hoping to talk about Grace Canary op-ed December 19th 2025. https://www.thecanary.co/opinion/2025/12/19/me-void

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 advocacy what with staying alive on a gofundme. But current GoFundMe money does last until the first week of November so I'm going to follow medical orders as best I can. (I've been chewing on doing an op-ed about advocacy which makes it hard to step back from advocacy LOL. It doesn't have a place to be published yet so I know I shouldn't put too much brain power to it. but I so want to offload what I wish I knew 30 years ago so others could have it) Needless to say It's going to be hard for me to be a good girl and not do advocacy in August. I've been pressurized and focused for so long. But I keep reminding myself for the first time in 18 months I'm not month to month survival. I have until the first week in november. And that's only thanks to recent gofundme donations. Thank you thank you! Since I agreed to rest I keep having to remind myself I have almost 3 months. Still far closer to the line of catastrophic health failure than I would like which is why it's hard to step back from the advocacy even for a month. But one medical provider rebutted me by saying think of how much better you'll be able to communicate if you've had some proper rest. And the brain fog has been quite profound so that's probably true But I am still having to fight for simple supports. There I don't get to rest. The mobility scooter is coming toward end of life. As is my back brace. Both are going to be quite the long battle. As per usual. The day back brace falling apart in particular has become a pain catastrophe. Apparently without it I am attempting to hold up my very hypermobile lower back with my intestines, According to my physio. Which explains what's been happening with my digestive system. Being hypermobile is weird. The body attempts to accommodate and manage in the strangest ways I think the stress of all of that plus getting my apartment in order because of an imminent suite incursion cuz they're supposed to be changing out the lights plus still needing to get the bad air of the downstairs duct work venting into mine dealt with plus the mast cell activation getting progressively worse worse is still more than I have in me. All of those kinds of things have had and have a me in such a pressurized state that I'm in a bad mood. And that's not really like me. I'm finding everything annoying. And when I say bad mood I mean BAD MOOD So feel free to remind me I'm supposed to be resting in August lol. Severe me day is August 8th. And I have to say that having severe ME(although I'd prefer to call it stage 3 ME), which for me is being patchwork held sort of kind help together and alive on minimal supports knowing that the minute I stop them the catastrophic failure will precipitate the worst kind of suffering and then of course death. there's a brutality to that reality that I never get to look away from. It never gets less scary. And I think being so outside my energy envelope there is an element of progressively compromising my psychological and emotional wellness. I think that's why I'm feeling so bad tempered. I think it's the emotional equivalent of when I scream myself upright because the back pain is so bad. The crankiness is a different kind of distress klaxon wail barbecue. And that's medically approved because it's good for me emotionally. So we'll see how I fare with that. Here are some photos from some other bouquets I made this summer (for the podcast I'll do it as the icon)

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 like this

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/19W73z4kQrQydqGEkndAyF87t33BBpFXHnEwNVxc75b4/edit?usp=drivesdk

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 for sure loss until mid-July and it's already mid June I also talk about housekeeping, the The ongoing problem with the downstairs ductwork venting into my apartment, and ongoing problems with management in my BC housing building So I'm documenting the process of making the document lol. Especially with everything else that's going on. I really do feel like garbage today after spending so long working on it. NOTE; please forgive the background hum. That's the air conditioner with fans and air purifiers going. I would normally turn some of those off but the downstairs stink keeps messing with the air conditioner's ability to do its job especially cuz I kept having to leave the kitchen and bathroom fans on and then regularly open the balcony door and turn The aircon off. So I hope that's okay. I didn't think it would be quite so loud but then I haven't had the aircon and the fans on at the same time when I did an episode. blArgh

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 a easier said than done thing. Let me know if it makes sense. If not I'll make another stab I guess