I AM MADELINE

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

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

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

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

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

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

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

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.

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

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/

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

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

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

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

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

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