I AM MADELINE
By I AM MADELINE
A performer (actress, singer), leader, mentor, and community volunteer with her hands on a number of projects, Madeline is a joy to know. She loves gardening and The Sound of Music. Her friends describe her as "effervescent."
She's one of more than 600,000 Canadians living with family of diseases twice as common as Multiple Sclerosis that many doctors don't even believe in, despite a strong correlation to viral infections. She and others face painful deterioration without more government supports, with still untold numbers of COVID-19 survivors joining them.
She's one of more than 600,000 Canadians living with family of diseases twice as common as Multiple Sclerosis that many doctors don't even believe in, despite a strong correlation to viral infections. She and others face painful deterioration without more government supports, with still untold numbers of COVID-19 survivors joining them.
I AM MADELINEFeb 10, 2024
00:00
34:36
Welcome Amazon music listeners
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/
May 10, 202402:00
Infection Red Alert + my eyes are full of blossoms
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
Apr 29, 202412:36
Mission 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 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
Mar 21, 202450:55
Barbie-Heimer
Rant, Disability Edition
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
Feb 10, 202434:36
New 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 participated 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 body is struggling so much that it's deprioritized energy to hair all over my body. This happened once before and precipitated my avalanche deterioration so I'm scared
For anyone looking for the link to share here once again is the GoFundMe https://gofund.me/cff39173
and the ricochet article https://ricochet.media/en/3991/Canada-MAID-policy-death-by-poverty along with the tweet thread that the journalist did so you can share it on Canadian social media https://twitter.com/SpichakSimon/status/1707785829433618864?t=RowAITYe-W17QLiZRGTNMQ&s=19 plus the YouTube channel https://youtube.com/@IamMadelinePod?feature=shared as I do now have some episodes recently created
The photo is of a Christmas present, a 3D printed miniature of the Moon that lights up. It makes me nerd girl happy🤓👩🏫. It was hard to take a picture of so I cradled it in my lap that's why it looks like a new moon
Jan 04, 202425:53
From YT Holiday Magic & Melancholy
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 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)
youtu.be/sm0pgHfXrjY?feature=shared
Once again the photos that I talk about I put up on the latest GoFundMe update if you want to see them 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)
youtu.be/sm0pgHfXrjY?feature=shared
Dec 24, 202324:46
Holiday Magic & Melancholy YouTube link
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
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 gofund.me/cff39173
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 gofund.me/cff39173
Dec 24, 202302:15
Birthday Blessings & Blues
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
Dec 16, 202317:42
YouTube videos live 6:00 p.m. Pacific standard Time December 7th
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
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)
youtu.be/bUJJKnqV5S4?feature=shared
Crush part 2 youtu.be/K-XjZwFL6KY?feature=shared
Begging for my life on the internet 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
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
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)
youtu.be/bUJJKnqV5S4?feature=shared
Crush part 2 youtu.be/K-XjZwFL6KY?feature=shared
Begging for my life on the internet 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
Dec 07, 202302:42
Less Crush More Bounce
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
Nov 30, 202328:44
Crush
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💗)
ricochet.media/en/3991/Canada-MAID-policy-death-by-poverty
And here is a tweet thread by the journalist who wrote the Ricochet article so that you can share it on Facebook or Instagram as Canadian news links are not permitted there still
Listen to the most recent episode of my podcast: Crush anchor.fm/i-am-madeline/episodes/Crush-e2c5131
Gfm
gofund.me/cff39173
#ableism #disability #pwme #MECFS #myalgicencephalomyelitis #chronicillness #chronicpain #fybromyalgia #postviral #longcovid #paxlovid #hbot #hyperbaric #canpoli #bcpoli #Canada
RICHOCHET article, (please share💗)
ricochet.media/en/3991/Canada-MAID-policy-death-by-poverty
And here is a tweet thread by the journalist who wrote the Ricochet article so that you can share it on Facebook or Instagram as Canadian news links are not permitted there still
Listen to the most recent episode of my podcast: Crush anchor.fm/i-am-madeline/episodes/Crush-e2c5131
Gfm
gofund.me/cff39173
#ableism #disability #pwme #MECFS #myalgicencephalomyelitis #chronicillness #chronicpain #fybromyalgia #postviral #longcovid #paxlovid #hbot #hyperbaric #canpoli #bcpoli #Canada
Nov 19, 202301:09:03
Ableist Tenancy Risk
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 ricochet.media/en/3991/Canada-MAID-policy-death-by-poverty and the gfm gofund.me/cff39173
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 ricochet.media/en/3991/Canada-MAID-policy-death-by-poverty and the gfm gofund.me/cff39173
Nov 08, 202321:34
Eclectic episode=law/clean/hbot/tiktok/paxlovid
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
Oct 21, 202341:41
Thanksgiving Fun but then CRAPTASTICNESS aka Why Does The Universe Hate Me
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
ricochet.media/en/3991/Canada-MAID-policy-death-by-poverty
Gfm
gofund.me/cff39173
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
ricochet.media/en/3991/Canada-MAID-policy-death-by-poverty
Gfm
gofund.me/cff39173
Oct 13, 202317:16
Brutality of post-exertion symptom exacerbation due only to lack of supports
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
ricochet.media/en/3991/Canada-MAID-policy-death-by-poverty
Gfm
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
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
ricochet.media/en/3991/Canada-MAID-policy-death-by-poverty
Gfm
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
Oct 03, 202319:08
Ricochet article feels
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
Sep 29, 202305:26
Vision Thing PLUS Ricochet article+ Immunologist + Hbot update
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.
Sep 29, 202354:07
Meltdown post COVID
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
gofund.me/cff39173
this is too difficult
Gfm
gofund.me/cff39173
Sep 27, 202313:59
Covid update Sept 25
After #paxlovid but before getting back on the intravenous I'm in a nether world of pre-existing symptom worsening
Sep 25, 202307:58
COVID burnt +paxlovid unexpected good results
COVID burnt(sooooo extra dangerously tired) +paxlovid unexpected good results on pre-existing postviral syndrome symptoms
Sep 23, 202308:11
Dark Morning Of The Soul
The sun is shining through my window it's almost 9:00 a.m., but my thoughts and emotions are in a dark place.
Sep 21, 202311:51
F*********K
An episode in which I curse, a lot. You were warned
Theme song of this episode youtu.be/Vqbk9cDX0l0?si=1hUdr5UqJQ2mlEQ7
Theme song of this episode youtu.be/Vqbk9cDX0l0?si=1hUdr5UqJQ2mlEQ7
Sep 21, 202307:21
Covid & the ER
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
gofund.me/cff39173
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
gofund.me/cff39173
Sep 19, 202317:11
Irony: Caught covid at LifeLabs getting immune function tests
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
gofund.me/cff39173
Gfm
gofund.me/cff39173
Sep 18, 202311:28
Perils Of Minimal Supports
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
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
Gfm
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
Sep 17, 202315:51
Worrisome Neurological Exam Today
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 gofund.me/cff39173
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 gofund.me/cff39173
Sep 13, 202325:51
Coping, Denial or Both
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
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
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
www.nature.com/articles/s41586-022-04432-7
Gfm for those who want it 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 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
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
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
www.nature.com/articles/s41586-022-04432-7
Gfm for those who want it 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💗. )
Aug 26, 202336:15
Hyperbaric №11-14, plus new supplements updates
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
Aug 23, 202314:35
The straw that has broken this camel's back
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 gofund.me/cff39173
Gofundme link for those looking for it gofund.me/cff39173
Aug 05, 202316:30
HBot 9/10 plus ombudsman calls
Hyperbaric Chambers 9 and 10 + calls with the British Columbia Ombudsman office which are a very interesting possibility....
Gfm gofund.me/cff39173
Gfm gofund.me/cff39173
Aug 03, 202322:35
Scarcity/Bounty Dance
What 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 gofund.me/cff39173
The image is bouquets I made a few years ago for one of the community projects
So you have the link handy if you want it, here's the GoFundMe gofund.me/cff39173
The image is bouquets I made a few years ago for one of the community projects
Jul 31, 202339:21
HB 7&8 plus external impacts
I 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 gofund.me/cff39173
Gfm link for anyone looking for it gofund.me/cff39173
Jul 25, 202323:59
Good News/Bad News + HB in-between info
Good 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 people
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 people
Jul 17, 202313:60
Hyperbaric #s 4,5,6 Tired Brain Forgetful edition
It 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 in energy & baby step beginnings of edema reduction
Here's the mast cell activation link I spoke about https://www.mastattack.org/2017/08/mastattack-107-laypersons-guide-understanding-mast-cell-diseases-part-51/
And here's the gofundme link if you're looking for it https://gofund.me/cff39173
Jul 14, 202327:32
Primer for Parents & caregivers of PVS children, esp those with myalgic encephalomyelitis
This 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 directly to caregivers and parents, but I guess my tired brain kept forgetting, so this seems like the perfect time
Some links I talk about in the episode:
Article I wrote for the disability Alliance of BC disabilityalliancebc.org/article-im-fighting-to-live-but/
Gender bias in research
pubmed.ncbi.nlm.nih.gov/33232627/
This is the UK journalist whose child died of ME after being sent home by the doctors who told her she was fine
www.thetimes.co.uk/article/my-daughter-couldnt-be-saved-but-theres-hope-for-other-me-patients-j7lbgg68k
There are a lot of longcovid/ME articles out there outside of canada, but perhaps this ATLANTIC article sums things up
www.theatlantic.com/health/archive/2022/09/mecfs-chronic-fatigue-syndrome-doctors-long-covid/671518/
And since I run out of the GoFundMe money that's been keeping me alive in a few weeks, here's that link
gofund.me/cff39173
Since this episode is to parents, I thought a childhood picture might be appropriate. This is long before I became health obstacled with post viral diseases at age 12
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 directly to caregivers and parents, but I guess my tired brain kept forgetting, so this seems like the perfect time
Some links I talk about in the episode:
Article I wrote for the disability Alliance of BC disabilityalliancebc.org/article-im-fighting-to-live-but/
Gender bias in research
pubmed.ncbi.nlm.nih.gov/33232627/
This is the UK journalist whose child died of ME after being sent home by the doctors who told her she was fine
www.thetimes.co.uk/article/my-daughter-couldnt-be-saved-but-theres-hope-for-other-me-patients-j7lbgg68k
There are a lot of longcovid/ME articles out there outside of canada, but perhaps this ATLANTIC article sums things up
www.theatlantic.com/health/archive/2022/09/mecfs-chronic-fatigue-syndrome-doctors-long-covid/671518/
And since I run out of the GoFundMe money that's been keeping me alive in a few weeks, here's that link
gofund.me/cff39173
Since this episode is to parents, I thought a childhood picture might be appropriate. This is long before I became health obstacled with post viral diseases at age 12
Jul 12, 202326:37
HB #3 - The Hot Mess Edition
Where 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 gofund.me/cff39173
Gfm if you could share, that would be so helpful gofund.me/cff39173
Jul 04, 202319:29
2nd hyperbaric chamber
The 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. gofund.me/cff39173
Also new law 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...
Also new law 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...
Jun 26, 202309:23
Hyperbaric Chamber June 20th 2023
I'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 to have to do it 21 week, one the next to come out when we know one treatment a week of the intravenous is it near enough, and then I'll have to drop down to one and stop it all together. If you're able to donate or share the GoFundMe that would be amazing gofund.me/cff39173
Not sure of hashtags work on Spotify podcast, but I thought maybe I should give it a go this episode
#myalgicencephalomyelitis #postviral incl #longcovid #pwme #Canada #BritishColumbia #disability #fibromyalgia #pots #immunodeficiency
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 to have to do it 21 week, one the next to come out when we know one treatment a week of the intravenous is it near enough, and then I'll have to drop down to one and stop it all together. If you're able to donate or share the GoFundMe that would be amazing gofund.me/cff39173
Not sure of hashtags work on Spotify podcast, but I thought maybe I should give it a go this episode
#myalgicencephalomyelitis #postviral incl #longcovid #pwme #Canada #BritishColumbia #disability #fibromyalgia #pots #immunodeficiency
Jun 23, 202309:38
Inside Insomnia
An inside view on my insomnia, especially when I decrease treatments. Definitely a part of the suffering Olympics
Jun 19, 202309:10
Suffering Olympics
The suffering olympics, inspired by a comment on the GoFundMe, which you can find here 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.*
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.*
Jun 16, 202353:30
Quickie update June 13th
An 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 nightmares
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 nightmares
Jun 14, 202335:54
Doctors politicians bureaucrats lend me your ears
And 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 then Shakespeare's Julius caesar!!!
Some of the articles and links I reference:
Gender bias in research
https://pubmed.ncbi.nlm.nih.gov/33232627/
the Atlantic- long covid/me
https://www.theatlantic.com/health/archive/2022/09/mecfs-chronic-fatigue-syndrome-doctors-long-covid/671518/
Forbes LONGCOVID. Long covid has over 200 symptoms and leaves one in five unable to work
https://www.forbes.com/sites/roberthart/2021/07/15/long-covid-has-over-200-symptoms-and-leaves-1-in-5-unable-to-work-study-finds/?sh=1f11766e5eb2
Fortune magazine long covid/covid death rates May 2023
https://fortune.com/well/2023/05/23/covid-deaths-one-person-every-four-minutes-vaccination-rates/
Mayo clinic article ME
https://www.mayoclinicproceedings.org/article/S0025-6196(21)00513-9/fulltext
Assessing the impact of one million COVID-19 deaths in America: economic and life expectancy losses
https://www.nature.com/articles/s41598-023-30077-1
Scientific American long covid
https://www.scientificamerican.com/article/we-need-an-operation-warp-speed-for-long-covid/
Scientific American tsunami of disability is coming due to covid
https://www.scientificamerican.com/article/a-tsunami-of-disability-is-coming-as-a-result-of-lsquo-long-covid-rsquo/
Gfm
https://gofund.me/cff39173
I am Madeline pod Twitter account https://twitter.com/IamMADELINEpod?t=EmaVURgn51YZJ739IBbW3g&s=09
ME International Consensus Criteria 2011 created by medical experts. https://t.co/TXyJSMdImp
Protect BC
https://protectbc.ca/public-healt-scandal-failure-to-warn/
May 30, 202357:59
Laugh & 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 are interested in donating or sharing the link gofund.me/cff39173 )
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 are interested in donating or sharing the link gofund.me/cff39173 )
Apr 22, 202331:32
Hope and Despair; the terrible dance
Where 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.
Apr 07, 202330:48
"Seeming ok"; the GREAT MISUNDERSTANDING
Seeming 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 do
Mar 09, 202326:21
Guided Meditation; Boundaries
Here 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 for life-saving supports. And now as I am having to do a human rights case that will take 5 years to see through to the end it's become clear that I will need the funds to stay alive that long. So this meditation is both a thank you to current supporters of the GoFundMe the podcast and the twitter, but also a possible avenue for people who weren't sure about donating to the GoFundMe because they didn't understand my disease or my treatments, to donate based on my talent. A big thanks to you all and I hope you enjoy this meditation
Harp Scott Hughes producer Kent Shaw Gfm
https://www.gofundme.com/f/MadelinesMiracle?utm_medium=copy_link&utm_source=customer&utm_campaign=p_lico+share-sheet
Mar 01, 202333:06
Meditation 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-sheet
Mar 01, 202308:38
Meditation 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-sheet
Mar 01, 202306:06
Meditation 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-sheet
Mar 01, 202307:39
Meditation 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-sheet
Mar 01, 202305:48