Shows
I AM MADELINEHeat/Air/PESE Updatesome of the links I talk about today Canary UK follow-up article June 2025https://www.thecanary.co/long-read/2025/06/17/assisted-dying-chronic-fatigue/Transcript of my bullet points for the BC budget presentationhttps://docs.google.com/document/d/1CLWh9vDEkw19LwB5JMlFmQyRRl6hXNiZOc-13cSRJfI/edit?usp=drivesdkMy audio recording of my BC budget presentation 2026https://open.spotify.com/show/0oNLwzI1qZvvZ51bau1aNigfmhttps://gofund.me/6d981312...2025-06-2228 min
I AM MADELINEBC budget a presentation 1:50 pm June 17ththey're supposed to be a transcription and a way to listen to it later. I don't really know what's the what with all that yet. I'm going to try to record my section so I can at least post it up here. But in the meantime these are the links I was able to find to be able to listen to BC budget things including mine on June 17th at 1:50 p.m. for 10 minutes (Just so you have it the GoFundMe is where I also put updates https://gofund.me/6d9813122025-06-1705 min
I AM MADELINEBC Millions Missing protest May 10th 2025In today's episode I talk about despair. But also by its very nature I also talk about hope. Because that's how I navigate it
I also talk about today's ME awareness month protest that happened in downtown Vancouver both in person and virtually hosted by BC millions missing. I sent along a speech that somebody else read out for me. Which was a brilliant accessibility option
Millions missing BC Facebook where they will have the live feed of today's protest that includes my speech. I'll also include a transcript below. Not that it's as good as I would have liked...2025-05-1113 min
I AM MADELINEBLOSSOM HUNT to cheer me (and hopefully you) after residential tenancy board hearingAir quality/residential tenancy board hearing today update. Blossoms are helping me stay positive so I thought you might like to see some as well. I'm too tired to really have gone out to seen them but I'm too stressed to have not gone out to find some blossoms to cheer me up
1,203 worldwide petition signatures now! Every share helps! https://bit.ly/Marcia_petition
GfM$only for sure last until April https://gofund.me/6d981312
If you know of any news sources at local in Canada or international journalists or of any larger bloggers or vloggers or social media...2025-04-0424 min
I AM MADELINECherry Blossoms Vs Torture FeelsProspect of running out of #GoFundMe $ soon is freaking me out. Esp as bad air situation in my apt has been devouring energy so I can't focus on petition or gfm properly. Residential tenancy board hearing Thurs(1:00 p.m. PST if you want to send positive energy), but even if they rule in my favor how long does it take to fix the bad air? I feel tortured
Petition definitely still open for signers and definitely international signatures welcome https://bit.ly/Marcia_petition
If you can share or donate to the gfm That would be amazing https://gofund.me/6...2025-03-3010 min
I AM MADELINEDouble RainbowI was originally going to call this episode hell, cuz it woke up this morning thinking maybe I'm actually in hell. But then things took a bit of a turn as I was recording which you will hear. an update on air quality issues, speaking to my MLA's office, running out of money in April, and trying to navigate getting the bad air in my apartment situation dealt with and the ongoing a horror of surviving on a GoFundMe and I'm back to month to month again.
No donations for 2 months so if you can share or donate to the...2025-03-0606 min
I AM MADELINEOver 1,000 Signatures On Petition!1,154 signatures now! Every share helps! https://bit.ly/Marcia_petition
every signature helps! International and across Canada signatures definitely welcome!
if you want to help me you directly can find me on FB and Instagram @Madelinenerdfighter, on YouTube and Twitter @iammadelinepod
Video I did for journalists relating to the petition (Link in petition) https://youtu.be/KIT1S7sTl4A?si=21WjZwpW6uF0yyhv
Did detailed update about #petition, bad apt air & how I am physically & emotionally navigating & not navigating these things in the update section (link in bio) https://gofund.me/6d981312
Medical articles I reference in this episode
...2025-02-0222 min
I AM MADELINEpetition related pain/energy crash (YouTube audio)this is the audio from a Recent YouTube I made https://youtu.be/NNjcNI9y2l8?si=Yf9V3G-o2SHRYy5C
Important links you can share:
Petition(International and across Canada signatures encouraged and welcomed!)
https://bit.ly/Marcia_petition
Canary UK article
https://x.com/TheCanaryUK/status/1870202754200940686?t=kEDZ1y5rkulir29j8zdlEg&s=19
https://www.thecanary.co/global/world-analysis/2024/12/20/marcia-mecfs-canada/
Petition YouTube
https://youtu.be/KIT1S7sTl4A?si=hBdcaHGUCi6Vu1zl
Journalist YouTube related to petition goes with press release
https://youtu.be/KIT1S7sTl4A?si=21WjZwpW6uF0yyhv
Meactionnet Twitter post of...2025-01-0606 min
I AM MADELINEThe Canary & The RollercoasterThe rollercoaster of more things going wrong and some things going right and looking promising and trying to temper hope
Good things, over 260 signatures in first week
Petition please sign and share
https://bit.ly/Marcia_petition
Canary UK article was published(Twitter so you can share on Instagram and Facebook)
https://x.com/TheCanaryUK/status/1870202754200940686?t=kEDZ1y5rkulir29j8zdlEg&s=19
Happened on my birthday, which is a hard day. Podcast ep I did last year https://open.spotify.com/show/0oNLwzI1qZvvZ51bau1aNi
Petition GoFundMe under iammadelinepod@gmail.com email
https://gofund.me/6d981312
Petition YouTube
...2024-12-2235 minI AM MADELINEPetition Please Signthe petition is up. it would mean the world to me if you would share it and sign it. Petition 2024
https://bit.ly/Marcia_petition
there's an intro to the petition to explain its format and contents a little more youtube video https://youtu.be/bCqRXCyBFRI?si=tTyKOHD0RLjV47ZT
also a video that I made for the press release because I don't see how I'm going to have enough energy to do interviews. I'm already super sick from the prep of going fully public
https://youtu.be/KIT1S7sTl4A?si=hBdcaHGUCi6Vu1zl
as well as the...2024-12-1204 minI AM MADELINEI'm not ok, Nov 29hard night of hardness
just wanted document what I feel like. cuz I don't feel very hopeful about survival and that's definitely eating my brain on top of Christmas is coming and my birthday is coming in both of those are shaping up to be alone for me
I hate to be so gloomy but it's what's happening. I don't know if anybody will care but I figure I should document it. I feel a bit like when I first started doing what I referred to as the maid recordings and let Ash (reporter who did the first five episodes...2024-11-2906 min
I AM MADELINEI Need A Christmas Miracle🤞🎄this episode I update you on the ongoing stink fiasco, running out of money, how both are negatively affecting my health and my head and how, as I'm running out of money very quickly, how I'm going to need to go fully public but how do I pull together the energy and time that it will take to prepare and organize that. how do I get comfortable with the idea that that going fully public for me has a very low chance of survival. plus I'm trying to prepare a petition. all with energy I don't have.
boy oh boy...2024-11-2924 min
I AM MADELINEwhat's the what re STINK, friendsgiving, pumpkin prowl, gfmwhere I talk about what's going on with getting the stink sorted, trying to get next constituency appointment with my mla, some nice things like the pumpkin prowl and friendsgiving, how close I am to running out of GoFundMe money and how I'm feeling about Christmas and my birthday coming
I can only put one photo as the icon which I chose to be the one that has the QR code that someone help me make, so I'm putting photos of things I'm talking about in the GoFundMe update. so just scroll down to the update to see photos, especially...2024-11-1626 minI AM MADELINEnightmare wakes meWhere the intensity of the abdication combines with the stink making me so extra sick and the Everest of difficulty of getting the system help me end up in my dreams creating a nightmare
RICHOCHET (most recent article )
https://ricochet.media/en/3991/Canada-MAID-policy-death-by-poverty
Gfm
https://gofund.me/cff39173
#MyalgicEncephalomyelitis #healthcare #canpoli #disability #MyalgicE #pwME #MECFS #longviral #MEAction #Canada #Vancouver #genderbias #medicalbias #healthcare #humanrights #longcovid #genetics #bcpoli2024-10-2908 minI AM MADELINETHE STINKI explain what I mean by THE STINK and how it's dramatically worsening my health conditions not just by not letting me rest but by triggering multiple immune responses and creating / amplifying lung issues as well as keeping the eye swollen(you'll see an episode about that extreme histamine response to an immune vulnerability in August podcast episodes) which means we're not able to do the hyperbaric properly, which on top of the energy drain of the stink means it's stealing from that rapidly reducing energy envelope. Sometimes I feel like a sitcom episode of the definition of *can't win...2024-10-2622 minI AM MADELINEDevastating News vs Arm Floaties (Friendsgiving?)Some Devastating News vs Arm Floaties (Friendsgiving?). I'm feeling it so bad I don't even know how to write a description. but I am still going to fight just struggling for arm floaties (a talk about that last episode). it makes it feel kind of futile so I guess I am having the hard news eat my brain a bit today
Gfm
https://gofund.me/cff39173
Last news article was from
RICHOCHET
https://ricochet.media/en/3991/Canada-MAID-policy-death-by-poverty
#MyalgicEncephalomyelitis #COVID19 #projectforawesome #longcovid #healthcare #nerdfighters #britishcolumbia #canpoli #disabilityadvocate #MyalgicE #pwME #MECFS #pots #fibromyalgia #MEAction #disabilityinclusion #disabilitysupport #pwd #pwdassistance #derb #immunedeficiency #Christmasmagic #Christmas...2024-10-0809 minI AM MADELINEArm FloatiesI'm having a hard time keeping my head above water so I'm this ep I talk about Arm floaties. Here's the text I talk about re what's the what with seem floaties https://www.tumblr.com/momentsinreading/701215724949094400/and-i-dont-think-anybody-should-feel-bad-if-they?source=share and here's the YouTube of Taylor Tomlinson talking about it. it's pretty funny. https://youtu.be/xuue-s8qM8w?si=FL0V1XxCw-ND2oy3
Ebv inserting itself the b cell Twitter thread https://x.com/BrainInflCollab/status/1831998355104289219?t=XniSFkLPxNatDtGx4P0Rzg&s=09
Ricochet article I mention
https://ricochet.media/en/3991/Canada-MAID-policy-death-by-poverty
Gfm
https://gofund.me/cff391732024-09-2657 minI AM MADELINEThere was an old lady who swallowed a fly AKA The perils of lack of supportsIn this episode I talk about a recent eye infection that is very much living in the land of the song *THERE WAS AN OLD LADY WHO SWALLOWED A FLY* aka lack of supports creating a domino effect of problems
for some reason the update to the Spotify for a podcasters app is not letting me add the photo I spoke of in the episode to this episode but you can see the photo of me doing my impression of a b-movie creature about to chase the villagers through the streets(AKA after the ER and before the antibiotics) on...2024-08-3122 minI AM MADELINEConstituency Appt + GENETIC testing in processIn 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...2024-08-1517 min
I AM MADELINEQueen Of The Cranky ArsesA snapshot of the difficulties of disability bias, disease bias, gender bias in a day-to-day out in the world kind of a way. Plus a little about the ombudsman. I'll do a whole episode about that at some point.
I'm not sure if you really be able to see it but it took a screenshot of a thank you letter I sent out to gfm donators. It really sums up that prospective I talk about in the podcast, the counterweight of gratitude and purpose. I'm not sure if you'll be able to see it well so maybe in the next...2024-06-2626 min
I AM MADELINETilt Table Fiasco vs Watermelon WarpantsYes the photo is the watermelon pattern on the *big girl underpants*(like the saying) I put on.
Gfm link
https://gofund.me/cff39173
Mentioned this episode-Not called the economist but economist written "from longcovid odds to lost IQ points, ongoing threats you don't know about"
https://www.ineteconomics.org/perspectives/blog/from-long-covid-odds-to-lost-iq-points-ongoing-threats-you-dont-know-about2024-06-1225 min
I AM MADELINEEmotional Resiliency ChallengesEmotional resiliency conversation today. I speak about this social media post about the power of speaking up https://www.tumblr.com/niceven1/751685307525660672?source=share and this one about goodness https://www.tumblr.com/prettydumbloverboy/635405123372417024/when-you-sneeze-in-public-strangers-will-say?source=share
For new listeners most recent article https://ricochet.media/en/3991/Canada-MAID-policy-death-by-poverty
Gfm https://gofund.me/cff391732024-05-2835 minI AM MADELINEWelcome Amazon music listenersHere are links to some articles that have been done but have some overview of what's happening to me with obviously journalistic vetting plus I'll link the GoFundMe as that's where I've been doing written updates
RICHOCHET article
https://ricochet.media/en/3991/Canada-MAID-policy-death-by-poverty
Also the journalist did a tweet thread with highlights from the article if that's something that you're interested on sharing Facebook and Instagram won't let you share a news links from Canada https://twitter.com/SpichakSimon/status/1707785829433618864?t=RowAITYe-W17QLiZRGTNMQ&s=19
Citr ep April 6 2023
https://www.citr.ca/radio/all-access-pass/episode/20230406/
Petition
https://www.meaction.net/2022/03/01/you-can-still-help-madeline/
...2024-05-1002 min
I AM MADELINEInfection Red Alert + my eyes are full of blossomsQuickie update about the very dangerous cellulitis infection that's making my bad situation worse. Doing my best to keep my head up and keep my sense of humor afloat. Not sure if I should post a picture of it cuz it's really yucky so I don't know... Blech. Instead I'll post a picture of the blossoms that are helping me navigate the panic that's curling around the edges of my thoughts. I know exactly how bad infections can get in my broken immune system2024-04-2912 min
I AM MADELINEMission Possible from Impossible???Mission impossible theme song in my head as I attempt to navigate all the layers of difficulty and complexity going on with more layers of difficulty and complexity getting added recently. So I thought it would do me good to talk about it and that you guys are probably wondering what's the what so here is an update.
Here's the tweet thread of the ricochet article I mentioned in this episode
https://twitter.com/SpichakSimon/status/1707785829433618864?t=QR1t1np3BwUNEKaARKpWvQ&s=19
Also, doing my best to keep my head in as good a place as I can, and I...2024-03-2150 min
I AM MADELINEBarbie-Heimer
Rant, Disability EditionThe title pretty much sums it up... It's My Disability Barbie-Heimer Rant!
RICHOCHET article
https://ricochet.media/en/3991/Canada-MAID-policy-death-by-poverty
Also the journalist did a tweet thread with highlights from the article if that's something that you're interested on sharing Facebook and Instagram won't let you share a news links from Canada https://twitter.com/SpichakSimon/status/1707785829433618864?t=RowAITYe-W17QLiZRGTNMQ&s=19
Gfm
https://gofund.me/cff391732024-02-1034 min
I AM MADELINENew Year; Renewed Battle!In which I talk about how I navigated the holiday season and the advocacy and healthcare battles I'm facing in the next couple of months. I do also finally talk about the nightmare suite inspection and of course that they are coming back in March even though I did everything they asked me to do. Let's just say I have thoughts and feelings about that🤨🫤. I also talk about how that inspection has precipated mass hair loss to the tune of half of my hair and counting. That's got my nurse practitioner worried, and me too! It's an indicator that my bod...2024-01-0425 min
I AM MADELINEFrom YT Holiday Magic & MelancholyTurned out to be surprisingly easy to convert the YouTube video to audio only so you could have it on both YouTube and the podcast platforms. I tried to play with the audio a little bit cuz my video recording app doesn't have quite as nice and audio as my usual audio recording app so I hope it's okay
Once again the photos that I talk about I put up on the latest GoFundMe update if you want to see them https://gofund.me/cff39173 but one of them I was able to put here
In case you'd rather view...2023-12-2424 min
I AM MADELINEHoliday Magic & Melancholy YouTube linkTech support on this site is trying to figure out why the link generator is generating problematic links meaning that some people especially coming from social media are not able to play on the website. So I did today's episode on youtube. I don't know how to download the audio to put it on here as well so here's the YouTube link and hopefully tech will get things sorted ASAP
https://youtu.be/sm0pgHfXrjY?feature=shared
I couldn't figure out how to add the photos I spoke about in the YouTube podcast episode so I posted them on a...2023-12-2402 min
I AM MADELINEBirthday Blessings & BluesMy birthday is coming up and I'm having all kinds of feelings about it so I thought I would share. The photo is from a story I talk about in the episode about my 10th birthday
For those who don't know yet I did make three YouTube videos if you want to share them, and of course there is still the ricochet article that you can share as well as the GoFundMe link. See below
Channel Link
https://youtube.com/@IamMadelinePod?feature=shared
Fighting to live but...(Madeline origin story)
https://youtu.be/bUJJKnqV5S4?feature=shared
Crush part 2 https...2023-12-1617 min
I AM MADELINEYouTube videos live 6:00 p.m. Pacific standard Time December 7thI have much to update you on but I will do that at another time as I've overdone on textual communication this week.
I wanted to let you know that I made three YouTube videos that I've set to premiere at 6:00, 6:20, and 6:35 pst tonight respectively. Then they'll set themselves up as regular public episodes. They are varying length as a tried to make them shorter but with such a complex situation that's super hard. Plus I'm super sick after two rather horrific suite inspections, which I'll tell you more about later, so it's really hard to pull my brain together...2023-12-0702 minI AM MADELINELess Crush More BounceI think the title sums it up. I talk about some good things that have happened and how I'm navigating the week leading up to the next fire suite t inspection with a little more resiliency. In the last episode I really just let it all hang out about how hard it was but also then after I got to say what's happening talk to myself back to a place of a more useful perspective
I also talk about the fact that the new replacement phone for the old dying phone opens an opportunity to maybe do some YouTube videos...2023-11-3028 minI AM MADELINECrushToday I talk not just about the pain and exhaustion and pushing through to get ready for the second fire inspection, but individual and collective ableism creating a situation that sends the message, in no uncertain terms, whether overt or covert, my country wants me dead. But I also talk about how for most people it's really a lack of understanding. And how each person working to understand means we begin to address that larger collective ableism infecting bureaucracies medicine journalism politics and the larger society
RICHOCHET article, (please shaređź’—)
https://ricochet.media/en/3991/Canada-MAID-policy-death-by-poverty
And here is a tweet thr...2023-11-191h 09
I AM MADELINEAbleist Tenancy RiskIn this episode I talk about today's suite inspection, the unrealistic ableist expectations and timelines (plus assumptions of supports that don't exist within the system and definitely not for my disease; myalgic encephalomyelitis) that have been put on me by my landlords and the fire inspector. Also, with the best of intentions I know, but still ableist interactions with an official who came to support me today, plus some good things! (Yes Halloween related hence the picture)
But ultimately I need more time to fight to stay alive but also to fight for supports for people like me, so here...2023-11-0821 minI AM MADELINEEclectic episode=law/clean/hbot/tiktok/paxlovidSo much happening to me, non of it easy or fun. Pro bono clinic says no, suite inspection colliding with med appts, hyperbaric chamber improvements, intravenous issues, long shot of tiktok, & am I officially longcovid on top of postviral EBV?
Ricochet https://ricochet.media/en/3991/Canada-MAID-policy-death-by-poverty
Gfm
https://gofund.me/cff39173
Gfm2023-10-2141 min
I AM MADELINEThanksgiving Fun but then CRAPTASTICNESS aka Why Does The Universe Hate MeI was going to title this episode why does the universe hate me, because today it was one hard thing after the other. But towards the end I got to thinking about how wonderful things giving was. But I don't understand why the difficult things to keep coming at me hard and fast and I still can't get basic supports
Fyi you can see the Rosemary and sunflowers that I grew in the photo in the middle of the table. I'm not sure you can see the jiggling tower of cranberry
In case you haven't read the recent article
RICHOCHET...2023-10-1317 minI AM MADELINEBrutality of post-exertion symptom exacerbation due only to lack of supportsI thought I would talk through post-exertion symptom exacerbation #pese while it was happening. I know that it's very hard for somebody who hasn't experienced it to really understand what it's like. The problem is I feel so fatigue cognitively impaired that I'm not sure how clear I was. But maybe that all into itself is an explanation. Also talk about a young person I met casually diagnosed with long covid without any instruction on The perils of overdoing and how you can permanently disable yourself.
I do currently have enough money to make it to the end of next...2023-10-0319 minI AM MADELINERicochet article feelsIt's been about 5 hours since the Ricochet articles been out. Trying unsuccessfully not to get my hopes up. Super burnt from doing my best to share the article on social media and with my social networks and Friends
The richochet article is out. Here's the link.
https://ricochet.media/en/3991/Canada-MAID-policy-death-by-poverty
Also the journalist did a tweet thread with highlights from the article if that's something that you're interested on sharing Facebook and Instagram won't let you share a news links from Canada https://twitter.com/SpichakSimon/status/1707785829433618864?t=RowAITYe-W17QLiZRGTNMQ&s=19
Money is beyond tight. I'm going to end...2023-09-3005 min
I AM MADELINEVision Thing PLUS Ricochet article+ Immunologist + Hbot updateA big welcome to ricochet readers finding this podcast due to the article written by Simon Spichak ( https://ricochet.media/en/3991/Canada-MAID-policy-death-by-poverty )! Fyi this was recorded on Augusta 31st(+ additions on September 8th and 9th), ie before previous episodes so don't be surprised, but I waited to published it until the RICHOCHET article came out has publications so far have preferred that and I wanted to be respectful as I'm so grateful for them telling my story. So basically we're a little out of sequence and I wanted to explain why. Also WHY I recorded this episode before the ricochet...2023-09-2954 minI AM MADELINEMeltdown post COVIDLooking at my bank account trying to figure out how to afford treatments next week trying to figure out how to stay alive trying to figure out how to pull the energy together to clean my apartment so I don't get evicted WITHOUT ENOUGH TREATMENTS trying to figure out figure out figure out too many things to figure out.
this is too difficult
Gfm
https://gofund.me/cff391732023-09-2813 minI AM MADELINECovid update Sept 25After #paxlovid but before getting back on the intravenous I'm in a nether world of pre-existing symptom worsening2023-09-2507 minI AM MADELINECOVID burnt +paxlovid unexpected good resultsCOVID burnt(sooooo extra dangerously tired) +paxlovid unexpected good results on pre-existing postviral syndrome symptoms2023-09-2308 minI AM MADELINEDark Morning Of The SoulThe sun is shining through my window it's almost 9:00 a.m., but my thoughts and emotions are in a dark place.2023-09-2111 minI AM MADELINEF*********KAn episode in which I curse, a lot. You were warned
Theme song of this episode https://youtu.be/Vqbk9cDX0l0?si=1hUdr5UqJQ2mlEQ72023-09-2107 min
I AM MADELINECovid & the ERThe mucus that I'm producing at the base of my throat to the covet turned out to be so thick that when I stood up quickly to go to the door to get a delivery of supplies from a friend it's covered my airway like a carton and it couldn't breathe. Made it out to the hallway where my friend pounded my back to open the airway. She insisted I go to the emergency room, but they didn't have any sort of violation for the part of the airway. 6 hours and risking some new infection and no actual help. Oh...2023-09-1917 min
I AM MADELINEIrony: Caught covid at LifeLabs getting immune function testsI tested positive for covid Saturday the 16th but fever and chills started the night before. First I thought it was just the mitochondrial issue cuz I pushed so far outside my energy envelope, but now it's clear that it's from a Life Labs worker who was very audibly ill and only wearing a surgical mask. This is a quick update while I still have a voice cuz I seem to be leaning into laryngitis. Worried about that I'll be missing intravenous this week so that's never good for already existing infections or the pre-existing post viral syndrome diseases especially...2023-09-1811 min
I AM MADELINEPerils Of Minimal SupportsI'm having quite the interesting 24 hours and not in a good way. Minimal supports has meant I've had a bad reaction to one of my treatments, actually both of my treatments today simply because minimum health supports always means maximum complicating issues. I am very not okay and I'm very worried about running out of emotional resiliency to keep fighting
Gfm
https://gofund.me/cff39173
Fyi this was published Thurs but that got messed up somehow and I can figure out how to change the publish date to the proper one. Le sigh2023-09-1715 minI AM MADELINEWorrisome Neurological Exam TodayAn update talking about an in-person neurological exam I had today. Telehealth with my primary care allopath a few weeks ago had concerned her enough to bring me in for an in-person appointment to assess some neurological issues I hadn't really been talking about, and the exam made it clear there were more I wasn't even aware I was having.
Also as I run out of gofundme money for treatments next weds here's the link if you're able to share it or donate yourself https://gofund.me/cff391732023-09-1325 minI AM MADELINECoping, Denial or BothWhere 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...2023-08-2636 min
I AM MADELINEHyperbaric â„–11-14, plus new supplements updatesI finally get around to talking about hyperbaric chamber treatments 11 through 14. And I talk about why it took so long to do so. Lots of stuff going on, all of it difficult, hard upon already hard. But still some interesting HB results in spite of all the obstacles and challenges. Plus I update you on some new oral supplements. I am speaking to the Ombudsman today, and I will update you about that when I have more info2023-08-2314 minI AM MADELINEThe straw that has broken this camel's backToday is very much the epitome of the adage *the straw that breaks the camel's back*. I thought I'll say what's happening while it's happening because this is exactly what it's like to be one of them is that millionsmissing. This is what happens when you don't have even have a MSP category of coverage for your disease, myalgic encephalomyelitis, and you end up on PWD assistance. I had a pretty hardcore meltdown after landlord's representative started making noises about my messy apartment so I'm guessing my tenancy is at risk again simply because I have never been able to...2023-08-0516 min
I AM MADELINEHBot 9/10 plus ombudsman callsHyperbaric Chambers 9 and 10 + calls with the British Columbia Ombudsman office which are a very interesting possibility....
Gfm https://gofund.me/cff391732023-08-0322 min
I AM MADELINEScarcity/Bounty DanceWhat is bounty and how do we as humans use it to navigate difficulty. In this podcast episode I begin to have a conversation about scarcity and bounty especially in regards to persons with disability and even more especially persons with disability in poverty
So you have the link handy if you want it, here's the GoFundMe https://gofund.me/cff39173
The image is bouquets I made a few years ago for one of the community projects2023-07-3139 min
I AM MADELINEHB 7&8 plus external impactsI talk about hyperbaric chamber treatments 7 and 8 along with the impacts of volunteering and having to deal with a host of day-to-day advocacy and self-care issues which all impact hyperbaric efficacy as I really would do best power resting but I don't have the supports that would afford me that medical necessity.
Gfm link for anyone looking for it https://gofund.me/cff391732023-07-2523 min
I AM MADELINEGood News/Bad News + HB in-between infoGood news /bad news, been a roller coaster few days. Plus some surprising improvements that can only be due to the hyperbaric especially in the face of the music Fest volunteering that I did.
The photo is the view I had lying down, cuz that was pretty much my festival weekend as I was surrounded by gorgeous music and kind people2023-07-1713 min
I AM MADELINEHyperbaric #s 4,5,6 Tired Brain Forgetful editionIt looks like I've brain fog miscounted hour many HB so far, and also forgot to document one treatment. Also tired brain used the wrong mic, so I'm sorry it's not recorded as clear as i like, LE SIGH. Also talking about the impacts of doing community building volunteering on my health and on the efficacy of the recent Hyperbaric treatments. Aka big setback. Much better emotionally because of that purpose and connection through my volunteering, though much worse physically because of it, and it has impeded the efficacy of the Hbot. That said post hyperbaric chamber number 4 big increase...2023-07-1427 min
I AM MADELINEPrimer for Parents & caregivers of PVS children, esp those with myalgic encephalomyelitisThis episode I try to pull my thoughts together to speak to parents and caregivers of person's with post viral diseases especially myalgic encephalomyelitis. This was inspired by
Andrea Haefele of www.mombehindthelabel.com who very kindly agreed to share what's happening to me with her online community. Her focus(if my beleaguered brain is understanding correctly) is as a parent with a autistic child who also has developmental and physical health challenges, and so does advocacy in that space as a mum, inspired me to make this episode. I was planning, for quite some time, to have this conversation...2023-07-1226 minI AM MADELINEHB #3 - The Hot Mess EditionWhere I talk about the hyperbaric chamber I did Wednesday, #3, on June 26th and how that's going and how the emotional impacts of running out of gofundme money are affecting efficacy of treatment and my emotional well being which all on its own affects my health
Gfm if you could share, that would be so helpful https://gofund.me/cff391732023-07-0419 min
I AM MADELINE2nd hyperbaric chamberThe second hard shell hyperbaric chamber treatment plus some concerns about developing situational depression due to running out of gfm money mid July and trying to decrease treatments in very worrisome ways. https://gofund.me/cff39173
Also new law https://www.chrc-ccdp.gc.ca/en/resources/historic-law-will-help-realize-the-rights-people-disabilities but with little to no postviral MSP coverage in Canada esp BC that alone doesn't save my life. I think that's part of the depression I seem to be slipping into...2023-06-2609 min
I AM MADELINEHyperbaric Chamber June 20th 2023I'm going to document each hyperbaric treatment and any symptoms whether they be decreased or exacerbated and exactly what's going on. Partly as general information, but mostly in the hopes that I will eventually be turned into a case study that could be useful not just to me but to others. Tired brain I forgot the PSI and a couple of other things, so hang on for that as it's second segment of this episode
Right now I have enough money until mid July, so I won't be able to carry on with this for very long. And I'm going...2023-06-2309 minI AM MADELINEInside InsomniaAn inside view on my insomnia, especially when I decrease treatments. Definitely a part of the suffering Olympics2023-06-1909 minI AM MADELINESuffering OlympicsThe suffering olympics, inspired by a comment on the GoFundMe, which you can find here https://gofund.me/cff39173 *Elizabeth King comment
I've got moderate to mild M.E, and I haven't been tested by the system because of the privilege of having a family who can afford to support me. You should have that kind of support too. You shouldn't have to put in a perfect performance at the suffering Olympics in order to get compassion, care, and respect.*2023-06-1653 min
I AM MADELINEQuickie update June 13thAn update about what's happening, how much time I have AKA how much GoFundMe money and how I can stretch it and how I'm trying to stretch it which is hugely problematic, treatment tweaks, infection management, and next episode I will do on the suffering Olympics, hopefully next week if I can wrangle some energy together
The flower picture you see is me continuing to focus on beauty as a way to manage the panic I'm feeling. Although it's amplifying now as I talk about in the episode with the onset of nightmares2023-06-1435 minI AM MADELINEDoctors politicians bureaucrats lend me your earsAnd by titling this ep, "Doctors, Politicians, Bureaucrats; Lend me your ears", I am indeed borrowing from Shakespeare's Julius Caesar as a way to start a direct but gentle and open conversation about post viral diseases, especially myalgic encephalomyelitis, and especially the state of PWD assistance in Canada, particularly British Columbia. It is created as a resource for each of those groups to share with the other as well as for patient populations share to those institutions and individuals within those institutions to increase understanding and start creating communication Bridges that will create solutions. So hopefully a much happier ending...2023-05-3157 min
I AM MADELINELaugh & the World laughs with you, Cry & you cry alone.I think the title sums it up. I pretty much put it all on the line about how I'm feeling about running out of money for treatments and supports at the end of May
The picture is from easter where I followed the host of the games party's instructions and wore my Easter finest ;P. I think it kind of sums up the *laugh* part. How I survive on whimsy and compartmentalizing.
(I keep forgetting to post up the go fund me link. I'm not sure if it will be clickable but you can copy and paste it if you...2023-04-2231 min
I AM MADELINEHope and Despair; the terrible danceWhere I decide to talk through my feelings after listening to the university of British Columbia Community radio station episode of the accessibility collective on citr that I participated in. How can anyone know the terrible pressure if I don't share what it's like.2023-04-0730 min
I AM MADELINE"Seeming ok"; the GREAT MISUNDERSTANDINGSeeming okay is not the same as being okay. I do my best to explain what's the what with that and the harm it can do2023-03-0926 min
I AM MADELINEGuided Meditation; BoundariesHere is the guided meditation with harp with the focus of boundaries.
Most of your questions will likely be answered in the introduction sections before this episode. But please reach out in the GoFundMe comments, on Twitter @iammadelinepod for the comments of this anchor podcast
And yes, if you like this and you would like future guided meditations with different focuses I would be happy to do so if I am able to. As I've mentioned before I am sharing this meditation with the hopes that it might have a positive impact on the GoFundMe which I am currently using...2023-03-0133 min
I AM MADELINEMeditation intro section 5 (of 5)I'm breaking the introduction into segments in case listeners want to go back and go over any particular section more easily. One of the reasons I am posting it is a thanks to my supporters. Another is that with the reality of facing five years to see a human rights case through to fruition I'll need the GoFundMe to expand a lot. So some people might be willing to share to it based on my talent versus my health obstacled situation. https://www.gofundme.com/f/MadelinesMiracle?utm_medium=copy_link&utm_source=customer&utm_campaign=p_lico+share-sheet2023-03-0108 min
I AM MADELINEMeditation intro section 4 (of 5)I'm breaking the introduction into segments in case listeners want to go back and go over any particular section more easily. One of the reasons I am posting it is a thanks to my supporters. Another is that with the reality of facing five years to see a human rights case through to fruition I'll need the GoFundMe to expand a lot. So some people might be willing to share to it based on my talent versus my health obstacled situation. https://www.gofundme.com/f/MadelinesMiracle?utm_medium=copy_link&utm_source=customer&utm_campaign=p_lico+share-sheet2023-03-0106 min
I AM MADELINEMeditation intro section 3 (of 5)I'm breaking the introduction into segments in case listeners want to go back and go over any particular section more easily. One of the reasons I am posting it is a thanks to my supporters. Another is that with the reality of facing five years to see a human rights case through to fruition I'll need the GoFundMe to expand a lot. So some people might be willing to share to it based on my talent versus my health obstacled situation. https://www.gofundme.com/f/MadelinesMiracle?utm_medium=copy_link&utm_source=customer&utm_campaign=p_lico+share-sheet2023-03-0107 min
I AM MADELINEMeditation intro section 2 (of 5)I'm breaking the introduction into segments in case listeners want to go back and go over any particular section more easily. One of the reasons I am posting it is a thanks to my supporters. Another is that with the reality of facing five years to see a human rights case through to fruition I'll need the GoFundMe to expand a lot. So some people might be willing to share to it based on my talent versus my health obstacled situation. https://www.gofundme.com/f/MadelinesMiracle?utm_medium=copy_link&utm_source=customer&utm_campaign=p_lico+share-sheet2023-03-0105 min
I AM MADELINEMeditation intro section 1 (of 5)I'm breaking the introduction into segments in case listeners want to go back and go over any particular section more easily. One of the reasons I am posting it is a thanks to my supporters. Another is that with the reality of facing five years to see a human rights case through to fruition I'll need the GoFundMe to expand a lot. So some people might be willing to share to it based on my talent versus my health obstacled situation. https://www.gofundme.com/f/MadelinesMiracle?utm_medium=copy_link&utm_source=customer&utm_campaign=p_lico+share-sheet2023-03-0102 min
I AM MADELINEA day where I feel like I'm in a Monty Python sketchFeeling a bit like I can't win for losing. The meditation plus intro are roadblocked by unexpected life happenings driven by ableism and nuttiness. It's collapsing me and likely will mean I don't have enough money until May from a medical / financial stance. Doing my best to stay strong and focus on the blossoms coming. Here's a picture of the first one2023-02-1614 minI AM MADELINEMeditation: WHY? What's the what.My process of coming to teach meditation and my experience of the 10 years I taught, and a little of the whys and wherefores leading up to the next two episodes which will include an intro and an actual guided meditation2023-02-1434 minI AM MADELINEA little good news! + exploring bias based developmental damage to a post viral ME childA little good news update. And then the rest is an exploration of the emotional and psychological harm of the post viral disease abdication (especially myalgic encephalomyelitis) inherent in the current allopathic MSP covered medical systems and the extreme developmental harm it has on children and young adults with these diseases2023-02-0430 minI AM MADELINEMLA zoom and trying to be a magical TED talkThe upshot of my meeting with my mla about getting me proper supports and keeping me alive, probably through a case study, and a suggestion of a stopgap in the meantime. For non-canadians, MLA stands for member of legislative assembly which is my provincial representative in British Columbia. It's the first time I've used the anchor app to record, so I don't think I'll do it again. There is a slight scratch here and there. Sorry about that.2023-01-0920 minI AM MADELINEThe best laid plans of mice and men...Where I think the gfm money is going to stretch until march because I was told a chunk of backdated GST money was coming in on January 5th, and that's not how it's playing out. I'm scared. I did have a relatively nice holiday season All things considered. And I talk more about that. Also about a conversation on January 9th with my mla's office! But it's looking like a day late and a dollar short unless something magical happens2023-01-0619 min
I AM MADELINENeeding a Yes Virginia there's a Santa Claus moment!(my 1st acting role playing Santa)It's my birthday week. I'm having all kinds of thoughts and feelings. Plus the latest on conversations with the government. Plus here is the link to the blog post of the article I mentioned https://disabilityalliancebc.org/article-im-fighting-to-live-but/ GFM link where I'm doing updates etc https://www.gofundme.com/f/MadelinesMiracle?utm_medium=copy_link&utm_source=customer&utm_campaign=p_lico+share-sheet2022-12-1922 minI AM MADELINETreatments vs Touching the VoidA dig down on my current treatments, as well as my experience of the difficulties of accessing them. Also, an update, the article I mentioned did get a different title, and can be found on Page 6 and 7 https://disabilityalliancebc.org/transitionfallwinter22/ . I also mentioned chatelaine article https://www.chatelaine.com/health/maid-assisted-death-poverty/ & the op-ed I wrote about a year ago https://ipolitics.ca/2021/11/15/the-disabled-are-choosing-to-die-because-they-cant-afford-to-live/ .2022-11-3033 minI AM MADELINEBureaucracy, Abdication, Running out of Money, OH MY(in the vein of lions and tigers and bears oh my)
Oct 11 2022, update
Really exhausted and cognitively impaired from advocation plus limiting treatments as I tried to
save money but I did my best with this update. Sadly the free recording app I used glitched a
few times, but I think the general sense is there. Far from perfect but I don't have the brain
power to try to record it again and I'm sure many of you are wondering what's the what with me,
so it...2022-10-1337 min
I AM MADELINEPersonal & Mayan Apocalypse
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Millions Missing "Testimony 5 - Madeline" Part 7This is the final instalment of The #MillionsMissing Podcast testimony from Madeline. Natalie, Diana, Rosalynde and Whitney have also shared their own, unique lived experiences of post-viral syndrome and Myalgic Encephalomyelitis with Millions Missing and each of their personal testimonies is as powerful as can be imagined. Visit the show's website or find this podcast on your favourite provider. https://anchor.fm/millions-missing-podcast All of the pictures and titles featured alongside these episodes have been provided by Madeline. We are incredibly grateful for the efforts of the Millions Missing team and Madeline for the irreplaceable energy and passion they have...2021-10-2136 min
I AM MADELINEMore Red Feathered Sherlocking - Millions Missing "Testimony 5 - Madeline" Part 6Madeline talks more about her quest for solutions
Picture: Madeline in her red feather boa, as she tells more of the Red feather bra saga2021-10-2140 min
I AM MADELINERed Feather saga Pt1 & Sherlocked Med history - Millions Missing "Testimony 5 - Madeline" Part 5In Part 5 of her testimony Madeline says knowing all she knows about the potential for even more severe illness and debilitation, she is scared and still without supports.
Picture: One of Madeline's favourite times of year is Halloween.2021-10-2037 min
I AM MADELINEPurpose and Connection- Millions Missing "Testimony 5 - Madeline" Part 4In Part 4 of her testimony to The #MissingMillions Podcast Madeline discusses how important it has been for her to engage with society and community through volunteering. Chronic illness can lead to severe social isolation, much of which could be prevented by lifting people out of poverty and providing more robust medical supports.
Picture: "Like this honey bee and flower, interconnectedness and purpose are essential to my survival." -Madeline2021-10-2028 min
I AM MADELINEBureaucracy Burden-Millions Missing "Testimony 5 - Madeline" Part 3Piles of paperwork, appointments, fees, circular direction from government ministries, a lack of meaningful coverage and little to no help navigating complex coverage where it's available. Living with post viral syndrome is hard enough, but without extended third-party health insurance it can be impossible.
Picture: Already facing red tape and bureaucracy in Canadian healthcare and public coverage, Madeline performs in a play in university.2021-10-2028 min
I AM MADELINEMedical Mechanics & CATS-Millions Missing "Testimony 5 - Madeline" Part 2People with post-viral syndromes, Long Haul COVID patients, and people with #ME often describe a debilitating "brain-fog." Madeline gives us a taste of what it's like to navigate the symptoms and mechanics of mitochondrial disease while living as an "energetic person trapped in a tired person's body."
Photo: Madeline in her high school production of CAST. "The play that helped me realize that performing was my calling."2021-10-2025 min
I AM MADELINEMillions Missing "Testimony 5 - Madeline" Part 1Madeline continues her testimony on the #MillionsMissing podcast, discussing how the interactions and impacts of multiple systemic illnesses involved with post-viral syndrome are amplified by poverty and bias. But she reiterates, even after 40 years with #ME, she is still not defined by her disease.
Photo: This photo was taken along with the first one just as her acting career seemed to be blossoming, Madeline says this image reminds her of what her illness stole from her, that she wasn't always "just the poor little sick girl."2021-10-2021 min
I AM MADELINEMillions Missing "Testimony 5 - Madeline" IntroMadeline had recently shared her story, entirely in her own words and without coaching from producers or hosts. We are honoured to share these episodes of The #MillionsMissing with our listeners.
#MillionsMissing podcast podcast is "dedicated to providing a platform for the uninterrupted testimonies of people suffering from chronic illness; it's a podcast created solely for the purpose of ensuring that these often silenced voices are heard, not only to help further the advocacy of the chronically ill, but also to provide an unparalleled, highly personal account of what it's actually like to live with chronic illness...2021-10-2019 minI AM MADELINEMadeline's Daily Three: Grateful, Celebrated, ValidatedEvery day Madeline finds three things to be grateful for, three things she is proud to have accomplished, and three things that validate her emotions. On August 14th, 2021, she recorded an update for our listeners and this is an addendum to that update that she hopes will leave you inspired and grateful.2021-08-3009 minI AM MADELINEAn Honest Update from MadelineMadeline has been working on recording her story, in her own words, for a shared episode with the Missing Millions Podcast but her plummeting energy, increasing pain, and never-ending bureaucracy have been slowing the process. In this episode she shares an honest update with you, dear listeners, because she hasn't stopped fighting for her life or the lives of countless other invisible, silenced, stigmatized people with myalgic encephalomyelitis. 2021-08-3025 minI AM MADELINEEp. 5 - Christmas in July"If they would rather die, they had better do it, and decrease the surplus population." said the world's most famous miser, Ebenezer Scrooge, of those in poverty, before his Christmas Eve enlightenment. Now, in 2021, the Canadian government has introduced a basic income for people with disabilities. It won't be law until it's likely far too late for Madeline and others with chronic illness or disability, barely surviving on government income well below the poverty line.2021-07-2250 minI AM MADELINEA quick update from the IAM teamWe're a small team, so when things get tough it's important we don't overdo it. Thanks for staying with us over our impromptu break: Episode 5 is coming soon.2021-07-1301 minI AM MADELINEEp. 4 - Do you jump, or do you burn to death?Madeline faces an impossible situation, and she’s not the only one. Poverty is forcing people into assisted death as Canada opens its medically assisted death laws to more people without ensuring the alternatives are in place for vulnerable people.2021-07-011h 05I AM MADELINEEp. 4 - Do you jump, or do you burn to death?The difference between life and death in Canada seems to be cash flow. Madeline has been backed into an impossible corner as the government prioritizes assisted death legislation over preventative supports and alternatives.
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Send in a voice message: https://anchor.fm/i-am-madeline/message2021-06-291h 05
I AM MADELINEEp. 3 - The elephant in the roomMadeline isn't just fighting a debilitating disease. She's up against a system that legislates her into poverty and denies access to the only treatment that works.
Transcripts: IamMadeline.com
Twitter: @IamMADELINEpod
Donate: Madeline's GoFundMe
Bonus episodes: Patreon
2021-06-1443 minI AM MADELINEEp. 2 - HysteriaMadeline’s disease has long been dismissed as “hysteria” a broad and harmful quasi-medical designation that was listed in the American Psychiatric Association’s Diagnostic and statistical manual of mental disorders in 1968 and removed in 1980. Millions of ME sufferers have been dismissed with this so-called diagnosis, which is drawn from a lack of evidence and extreme bias.2021-05-3138 minI AM MADELINEThe Commentary: Ash Kelly discusses I AM MADELINELast week, I AM MADELINE host Ash Kelly was a guest on Joseph Planta's podcast, The Commentary. She told Joe about this podcast, why Madeline’s story needs to be heard, and how new ideas might be changing journalism for the better.
Learn more about Joe's show at TheCommentary.ca2021-05-2931 minI AM MADELINEEp. 1 - How do you solve a problem?Madeline has a magnetic personality and she's a prolific volunteer who is well known in her community. She's also scheduled to die in just a few weeks. Madeline lives with a debilitating but treatable disease that is so stigmatized many doctors still don't believe it's real. Now millions more are likely to join her, as some long-haul covid sufferers appear to have the same illness.
Madeline's story is woven into the history of infectious disease, post-viral illnesses, and other chronic diseases that have marginalized and impoverished so many.
Co-produced by Kelvin Gawley and Ash Kelly2021-05-1631 minI AM MADELINETrailer, Season 1Myalgic Encephalomyelitis does not have to be a deadly disease. As hundreds of thousands of people with so-called "Long Haul COVID-19" are being diagnosed with the illness, people like Madeline have been fighting for treatment for decades. She is facing a ticking clock, as her final few weeks of being able to pay for minimal care, approach. Without treatment she fears a full collapse, she has chosen a medically assisted death. Madeline says she and others with treatable diseases being forced into choosing a medically induced death over a rapid and painful decline into more severe disability.
Thank you to...2021-05-1001 min