I AM MADELINE

In 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 it to have been but it was all that my brain could pull together. When I was listening to it I thought oh poop I should have explained more about how deterioration always cost the system more. But brain fog is brain fog https://www.facebook.com/share/14GyEqX6Ucy/ The petition https://bit.ly/Marcia_petition The GoFundMe where I'll put the pictures I talk about in the episode https://gofund.me/6d981312 May 10th 2025 millions missing speech transcript was too long. The description section of the Spotify for podcasters wouldn't let me include it. here's a link to a Google doc https://docs.google.com/document/d/1LturGCnDTnfB_Ah7Ic-sxxp0jz6A3w1U-czWk6vkGBE/edit?usp=drivesdk

Air 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 *influencers*(whatever that means lol. basically folks with a larger amount of people paying attention to what they're talking about) anywhere in the world as the petition is signable worldwide, who you think would be interested in my story and in sharing the petition please let me know various ways to reach me Twitter @IamMadelinePOD https://x.com/IamMADELINEpod?t=N1PxUmXwOMf_3ccRl44Z6g&s=09 Instagram @Madelinenerdfighter https://www.instagram.com/madelinenerdfighter?igsh=MW91aXY0MHRtaHprNg== Facebook @Madelinenerdfighter https://www.facebook.com/share/1AVQA39L9m/ Blue sky https://bsky.app/profile/madelinenerd.bsky.social YouTube @IamMadelinePOD https://youtube.com/@iammadelinepod?si=2Ls-cozjNfkurCFD Gofundme link above (You can send messages and leave comments) And obviously you can leave comments here on the podcast episodes #canpoli #disability #MyalgicE #MECFS #MEAction #Canada #bcpoli

Prospect 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/6d981312 Hard pressed to find a way to cheer myself up. But I'm still trying. Latest cherry blossoms seen coming home from treatment #MyalgicEncephalomyelitis #longcovid #nerdfighters #britishcolumbia #canpoli #MyalgicE #pwME #MECFS #pots #fibromyalgia #MEAction #disability #pwd #pwdassistance #derb #immunedeficiency #Canada #Canadian #genderbias #medicalbias #healthcare #humanrights #epsteinbarrvirus #bcpoli

I 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 GoFundMe that will be amazing https://gofund.me/6d981312 and the petition is the ongoing need in regards to signatures. worldwide signatories greatfully accepted. I don't think anything changes until international pressure forces Canada and British Columbia to do so. https://bit.ly/Marcia_petition

a continuation of the previous episode with an unexpected need to update that arrived at 8:30 in this evening in the forum of a wildly inappropriate timed visit by my property portfolio manager dropping off a document that should have been sent to my advocate. so bizarre. bad just keeps getting worse

where I talk about the paradox of needing my story to be told by legacy Media and the health compromise that that will represent which is worsened by the air quality issues in my BC housing apartment. also the paradox with the air quality in my apt where I needed the air quality be bad but the paradox of that it makes me super sick and could fatally capsize me especially as I had to close the windows and doors turn off the air purifiers and the kitchen and bathroom fans to try to let the air get bad. do have a listen for the episode right after this one which is a direct follow-up the air quality issues becoming a worse crazy train than they were. but I didn't have brain power to try to connect the two pieces of audio. that's a surprisingly complicated production number to do now that Spotify for podcasters has removed its own internal recording

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 MS multiple sclerosis Epstein-Barr inside b cells https://www.nature.com/articles/s41564-024-01699-6 Long covid paxlovid effects https://www.nature.com/articles/s43856-024-00668-8?fbclid=PAY2xjawH2PH9leHRuA2FlbQIxMAABpow7bc4B3V5dxqcn7ftyw1Fk7PXKK18cueta2TsV2YhO4Dv5vst3ixiLxw_aem_5KBX8dXR1tMid_bS0aNM8Q#Ack1 New York times article about it as well https://www.nytimes.com/2025/01/06/health/paxlovid-long-covid.html?unlocked_article_code=1.nE4.m48T.vJbrmhSp77Wi&smid=nytcore-ios-share&referringSource=articleShare I think this is the spironolactone(tired brain is tired) Epstein-Barr study https://onlinelibrary.wiley.com/doi/10.1111/imj.23_15766 #MyalgicEncephalomyelitis #healthcare #canpoli #disability #MyalgicE #pwME #MECFS #MEAction #Canada #bcpoli

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 petition https://x.com/MEActNet/status/1869092831513673850?t=6500TLTtNYiH5QopmdJJZw&s=19 #CANpoli #disability #MyalgicE #pwME #MECFS #bcpoli #longviral

The 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 https://youtu.be/KIT1S7sTl4A?si=hBdcaHGUCi6Vu1zl Meactionnet Twitter post of petition which can be shared on Instagram and Facebook https://x.com/MEActNet/status/1869092831513673850?t=6500TLTtNYiH5QopmdJJZw&s=19 Twitter thread answer from question was applying for maid a way to highlight your plight https://x.com/IamMADELINEpod/status/1870669017108947122?t=gWI86YwHi_sCW0NwdJBS0Q&s=19 I reference Stephanie lavois Lyme disease Quebec died at 56 lb because they wouldn't put a feeding tube in https://globalnews.ca/news/10529000/lyme-disease-assisted-death-canada/

the 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 original GoFundMe here https://gofund.me/cff39173 there is now a petition gofundme https://gofund.me/6d981312 that one I'm not 100% sure is through verification. GoFundMe support says they see it to be that way, but the test $5 donation that a friend put in hasn't been transferred yet so I won't be fully sure until I see that. and when I think it's verified I will put that in the upper part of that GoFundMe Amazon wish list Madeline for those who don't like gofundme. but please note Sunday only delivery. and not Sunday the 22nd please. I won't be home that day. during the holiday season it's actually going to be really hard to know what days I'll be home. I might not be home Sundays between Christmas and New Year's either that said there is a digital Amazon gift card option that I put in there they don't think that matters what day cuz it's not an in-person delivery as far as I can figure out. but my tired brain is extra tired and keeps making mistakes https://www.amazon.ca/hz/wishlist/ls/KF3XJG9AUU95?ref_=wl_share

hard 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) listen to them and then she recommended doing the podcast fear has me anxious and miserable and dark brained

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, do I need a Christmas miracle! but how? where? I keep trying to remind myself that when Liza insisted on setting up the GoFundMe I thought I was going to die. and never thought people would donate to it. i never thought I would stay alive this long. but now that that is not getting triggered by any new articles. no publication will do one and the only way I seem to have any chance that that happening is going fully public, what do I do? GoFundMe link where you'll see the photos I talked about in this episode in the updates. should be to updates ago as of today https://gofund.me/cff39173 and here is the Amazon wish list I spoke of https://www.amazon.ca/hz/wishlist/ls/KF3XJG9AUU95?ref_=wl_share I'm really struggling to not lose hope. I'm trying to focus on next steps. I'm trying not to let the fact that I'm not sure how I navigate through Christmas as I think I may run out of money before Christmas. and that's eating my brain. and Christmas is already hard for me. do you think it will help to write a dear Santa letter? cuz honestly I would try anything right now

where 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 the state of my bathroom fan which gives you a sense of how much worse the ductwork must be and I believe you should be able to download the photo you see as the icon of this episode gfm https://gofund.me/cff39173 here's that study from Quebec about the 37% rate of long covid that they're finding in their medical providers after the third covid infection https://www.inspq.qc.ca/publications/3510

Where 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 #bcpoli

I 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 for losing*. so ridiculous. it would be funny except for the fact that the stakes couldn't be higher Gfm https://gofund.me/cff39173

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 #christmasmiracle #philanthropy #Canada #Canadian #Vancouver #genderbias #medicalbias #healthcare #MedicalMeToo #humanrights #HUMANRIGHTSTRIBUNAL #humanrightsforall #mydisabledlifeisworthy #epsteinbarrvirus #PostViral #Friendsgiving

I'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/cff39173

In 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 the latest update of the GoFundMe -the link is below Here is that blurb I spoke about in the episode that my advocate helped me write that it makes sharing what's happening to me easier for you Madeline is still valiantly struggling for her life and needs your help to get her to live long enough for a currently confidential in-development advocacy initiative to launch, tentatively spring 2025. Ways to help: -Share the gofundme - https://www.gofundme.com/f/MadelinesMiracle -Donate to the gofundme -Let Liza or Madeline know of any media sources or social media advocates that would be willing to tell her situation's new developments: that neither a human rights tribunal or supreme court Charter Challenge is possible for lack of supports to people with disabilities and/or no category of coverage for her disease, myalgic encephalomyelitis (ME)/Long-Viral this information was given to Madeline by multiple human rights lawyers and the BC Ombudsperson who have told her that all these issues are considered political, thus meaning no recourse is available For your reference and verification of her situation, here is a link to the twitter thread that includes the article by Ricochet Media and can be shared on instagram and facebook: https://twitter.com/SpichakSimon/status/1707785829433618864?t=RowAITYe-W17QLiZRGTNMQ&s=19

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!

A 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 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 GoFundMe update I'll post it there as well Gfm https://gofund.me/cff39173 --- Send in a voice message: https://podcasters.spotify.com/pod/show/i-am-madeline/message

Yes 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-about --- Send in a voice message: https://podcasters.spotify.com/pod/show/i-am-madeline/message

Emotional 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/cff39173 --- Send in a voice message: https://podcasters.spotify.com/pod/show/i-am-madeline/message

Here 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/ https://dir.gov.bc.ca/gtds.cgi?show=Branch&organizationCode=HLTH&organizationalUnitCode=MH Dabc Nov 2022 Blog https://disabilityalliancebc.org/article-im-fighting-to-live-but/ Pdf mag https://disabilityalliancebc.org/transitionfallwinter22/ Tyee November 14 2022 https://thetyee.ca/News/2022/11/14/Chronically-Ill-Dying-Poverty/ Chatelaine https://www.chatelaine.com/health/maid-assisted-death-poverty/ Gfm https://gofund.me/cff39173 Tyee article https://thetyee.ca/News/2021/07/05/I-Should-Not-Have-To-Beg-For-My-Life/ Canada land podcast https://www.canadaland.com/madeline-medical-assistance-in-dying-priced-out-of-life/ https://www.canadaland.com/podcast/723-the-high-cost-of-living/ Update https://www.canadaland.com/podcast/741-updates-on-pretendians-porn-and-being-priced-out-of-life/ Millions missing simulcast https://twitter.com/millionspod/status/1450838974864445440?t=tiE3pZtRLB9LiRVXIg4u8g&s=19 My Op-ed https://quoimedia.com/canadians-with-disabilities-like-me-are-choosing-to-die-because-we-dont-have-the-financial-resources-to-live/ --- Send in a voice message: https://podcasters.spotify.com/pod/show/i-am-madeline/message

Quickie 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 system --- Send in a voice message: https://podcasters.spotify.com/pod/show/i-am-madeline/message

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 adore spring so here's some spring especially for people who aren't experiencing it yet #canpoli #bcpoli #pwme #meaction #MECFS #myalgicE #disability #HumanRights #genderbias #pwd #healthcare #Canada #britishcolumbia --- Send in a voice message: https://podcasters.spotify.com/pod/show/i-am-madeline/message

The 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/cff39173 --- Send in a voice message: https://podcasters.spotify.com/pod/show/i-am-madeline/message

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

Turned 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 it on YouTube here's that link once again: Holiday magic and Melancholy (on YouTube) https://youtu.be/sm0pgHfXrjY?feature=shared --- Send in a voice message: https://podcasters.spotify.com/pod/show/i-am-madeline/message

Tech 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 recent update on the GoFundMe page https://gofund.me/cff39173 --- Send in a voice message: https://podcasters.spotify.com/pod/show/i-am-madeline/message

My 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://youtu.be/K-XjZwFL6KY?feature=shared Begging for my life on the internet https://youtu.be/B5P6CFteyiU?feature=shared Gfm https://gofund.me/cff39173 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 --- Send in a voice message: https://podcasters.spotify.com/pod/show/i-am-madeline/message

I 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 to be brief. But I wanted to try to make best use of December because I don't see anyone donating to a GoFundMe in January. I added all the hashtags I could think of and did my best with the description and adding links in the description. I ended up having to get a new phone and a friend helped me with that and since it's a much better phone I was able to do videos now, but the light was a little off because I'm so sick that I can't handle strong light for very long so I tried my best to adjust the color afterwards. They're not amazing but maybe that works in my favor that they're not glossy. I guess we'll see. I will try to make more in the coming weeks energy permitting I don't expect you guys to watch them for the premiere but if you could share the episodes after the premiere when they're public with your networks and any social media that would be amazing Channel Link https://youtube.com/@IamMadelinePod?feature=shared Setting it up as a premiere it means I can't give you the specific links to those videos right this second as it seems to automatically set it to private, at least I don't think so. So if these links don't work then let me know and I will share those later in case it's too much of a pain to dig them up Fighting to live but...(Madeline origin story) https://youtu.be/bUJJKnqV5S4?feature=shared Crush part 2 https://youtu.be/K-XjZwFL6KY?feature=shared Begging for my life on the internet https://youtu.be/B5P6CFteyiU?feature=shared #MyalgicEncephalomyelitis #COVID19 #projectforawesome #longcovid #healthcare #nerdfighters #britishcolumbia #canpoli #disabilityadvocate #MyalgicE #pwME #MECFS #pots #fibromyalgia #MEAction #disabilityinclusion #disabilitysupport #pwd #pwdassistance #derb #immunedeficiency #Christmasmagic #Christmas #christmasmiracle #philanthropy #Canada #Canadian #Vancouver #genderbias #medicalbias #healthcare #MedicalMeToo #humanrights #HUMANRIGHTSTRIBUNAL #humanrightsforall #mydisabledlifeisworthy #epsteinbarrvirus #PostViral --- Send in a voice message: https://podcasters.spotify.com/pod/show/i-am-madeline/message

I 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, still protecting my identity but at least you get to see my eyes. I still have to pull that energy together and it will still have to be after the next fire sweet inspection which I hope is the last. I need to be able to focus back on the advocacy because I am still hand to mouth with funds for treatments https://twitter.com/SpichakSimon/status/1707785829433618864?t=RowAITYe-W17QLiZRGTNMQ&s=19 --- Send in a voice message: https://podcasters.spotify.com/pod/show/i-am-madeline/message

Today 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 share

In 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 once again is the link to the Ricochet article https://ricochet.media/en/3991/Canada-MAID-policy-death-by-poverty and the gfm https://gofund.me/cff39173 --- Send in a voice message: https://podcasters.spotify.com/pod/show/i-am-madeline/message

So 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 Gfm --- Send in a voice message: https://podcasters.spotify.com/pod/show/i-am-madeline/message

I 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 article https://ricochet.media/en/3991/Canada-MAID-policy-death-by-poverty Gfm https://gofund.me/cff39173 --- Send in a voice message: https://podcasters.spotify.com/pod/show/i-am-madeline/message

I 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 week but I'm really struggling with that daily and weekly fight to survive. Having pushed myself to try to clean because I'm really scared about my tenancy being at risk and the death sentence that anyone attempting to be force me into a care home would represent, it's really emotionally crushing me. I'm still aimed at getting to thanksgiving, and hoping that help bouys my spirit but it will make the post exertion symptom exacerbation fall off a cliff. And I don't currently have the resources to get enough treatments to get it to restabilize. And that doesn't begin to address having enough money to have enough treatments to have enough energy to clean my apartment. And around and around I go on the Merry-Go-Round of never having enough supports either on my disease or PWD assistance in general RICHOCHET article https://ricochet.media/en/3991/Canada-MAID-policy-death-by-poverty Gfm https://gofund.me/cff39173 Email address, BUT not the one for the e-transfer cuz again I haven't been able to figure out how to set that up myself, but the way to reach me to give you the transfer info that liza set up when she set up the GoFundMe iammadelinepod@gmail.com --- Send in a voice message: https://podcasters.spotify.com/pod/show/i-am-madeline/message

It'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 up using October grocery money on treatments next week. I am struggling with emotional Wellness from the constant fight just stay alive and the isolation so I need to know that I can be well enough to make it to my friends Thanksgiving because catching covid from Life Labs a few weeks ago really knocked me over plus suite inspection concerns are causing me to push myself to clean which is capsizing me further Gfm as I put the Ricochet Link in the update there because Facebook and Instagram are seemed to allow that to post as well https://gofund.me/cff39173 --- Send in a voice message: https://podcasters.spotify.com/pod/show/i-am-madeline/message

A 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 article came out because I didn't know when it would come out and I couldn't be sure what brain power I'd have then. The perils of a mitochondrial disorder on minimal supports; unpredictable energy for even simply tasks. Episode title talks about some of the ways that I'm employing the coping strategies I talked about in the previous episodes. Also mini update on latest hyperbaric chamber new/supplements. PLUS Sept 8 Immunologist visit 'feels' right after the appointment and then middle of the night dark night of the soul it precipitates. Pic is of a winter holiday Volunteer project from a couple of years ago as it's getting ready for distribution. The room smelled like a forest. It was wonderful Gofundme link for those looking for it https://gofund.me/cff39173 I misspoke *vision thing*is a song AND album name. It's a kind of dark song so I wasn't going to share it but after the middle of the night dark thoughts maybe it's appropriate to https://youtube.com/playlist?list=OLAK5uy_mPZRUA0DBWhgunX03jvJ5q_zLR19c4y7g&si=aH3rOQDDevk-1duV Here's the link in the tweet thread the journalist did with highlights from the article (FB and Instagram block news links now) https://twitter.com/SpichakSimon/status/1707785829433618864?t=RowAITYe-W17QLiZRGTNMQ&s=19 And in case you hate Twitter now, I also put the link in the update to the GoFundMe because social media is seeming to allow that to share. --- Send in a voice message: https://podcasters.spotify.com/pod/show/i-am-madeline/message

Looking 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/cff39173 --- Send in a voice message: https://podcasters.spotify.com/pod/show/i-am-madeline/message

After #paxlovid but before getting back on the intravenous I'm in a nether world of pre-existing symptom worsening --- Send in a voice message: https://podcasters.spotify.com/pod/show/i-am-madeline/message

COVID burnt(sooooo extra dangerously tired) +paxlovid unexpected good results on pre-existing postviral syndrome symptoms --- Send in a voice message: https://podcasters.spotify.com/pod/show/i-am-madeline/message

The sun is shining through my window it's almost 9:00 a.m., but my thoughts and emotions are in a dark place. --- Send in a voice message: https://podcasters.spotify.com/pod/show/i-am-madeline/message

An episode in which I curse, a lot. You were warned Theme song of this episode https://youtu.be/Vqbk9cDX0l0?si=1hUdr5UqJQ2mlEQ7 --- Send in a voice message: https://podcasters.spotify.com/pod/show/i-am-madeline/message

The 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 well. Wasted money I don't have on the taxi home and I hope i don't get charged for the ambulance. Plus my landlord s are trying to do a sweet inspection, but I seem to have gotten their liaison to hear me out that with an immune deficiency I am infectious much longer than a healthy person with covid. That's how it's played out with all of my infections that are contagious Gfm https://gofund.me/cff39173 --- Send in a voice message: https://podcasters.spotify.com/pod/show/i-am-madeline/message

I 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 the myalgic encephalomyelitis. Also missing physiotherapy so pain is likely to go nuclear. And I'm spending money I don't have on things to support me through covid. Very worried about a paxlovid resurgence, and I talk more about that in this mini update Gfm https://gofund.me/cff39173 --- Send in a voice message: https://podcasters.spotify.com/pod/show/i-am-madeline/message

I'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 sigh --- Send in a voice message: https://podcasters.spotify.com/pod/show/i-am-madeline/message

An 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/cff39173 --- Send in a voice message: https://podcasters.spotify.com/pod/show/i-am-madeline/message

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

I 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 info --- Send in a voice message: https://podcasters.spotify.com/pod/show/i-am-madeline/message

Today 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 have the basic doctor prescribed housekeeping myalgic encephalomyelitis needs. It's just too much. Everything is just too much. Everybody expects me to be always brave and strong and I just can't do it. No one could do it. I've hit rock bottom with a crushing thud Gofundme link for those looking for it https://gofund.me/cff39173 --- Send in a voice message: https://podcasters.spotify.com/pod/show/i-am-madeline/message