today I don't just document the grinding difficulty but my memory banks pulled up some really nice light and darkness times from when I was little and I also talk about some really nice things from some people now as well. focusing on the reality and all of its shades light and dark is definitely a critical part of how I've been surviving

once again here is the legacy News campaign document if you want to participate

I was told that if 12 people write to a news source to ask for the same story that it will happen🤞

Template https://docs.google.com/document/d/1VD2zqOKxcQp7SUP06mY8slZlH1sXkKHKVPV0IfLo-uI/edit?usp=sharing

Full info in gfm update https://gofund.me/6d981312

#myalgicE #disability #canpoli #longcovid

where I talk about how I feel about My power and the leadership roles I have been in and the leadership roles I may be in in the near future depending on how the email campaign goes

speaking of which

I was told that if 12 people write to a news source to ask for the same story that it will happen🤞

Template https://docs.google.com/document/d/1VD2zqOKxcQp7SUP06mY8slZlH1sXkKHKVPV0IfLo-uI/edit?usp=sharing

Full info in gfm update https://gofund.me/6d981312

#myalgicE #disability #canpoli #longcovid #power

where I talk about how rest day is rarely just the rest day because all the stuff I've been compartmentalizing comes out and wants to be processed. which is not very restful. having my body not moving is only one kind of the rest that I need

again here's the email campaign Because I was told that if 12 people write to a news source to ask for the same story that it will happen🤞

Template https://docs.google.com/document/d/1VD2zqOKxcQp7SUP06mY8slZlH1sXkKHKVPV0IfLo-uI/edit?usp=sharing

Full info in gfm update https://gofund.me/6d981312

#myalgicE #disability #canpoli #longcovid #idesofMarch

It's pi day. unfortunately I don't have any actual pie to celebrate with. But I hope you're having some nerdy fun. For me it's whimsy as I'm still experiencing squish squash. Still documenting what it feels like to be dealing with so much and then have more land on my plate yesterday. I don't know how else to push back on the bias that thinks PWD on assistance are just sitting around eating bonbons and watching TV. blArgh

So You can participate in the email campaign here's template for you https://docs.google.com/document/d/1VD2zqOKxcQp7SUP06mY8slZlH1sXkKHKVPV0IfLo-uI/edit?usp=sharing

as well (Link and more information in GoFundMe update https://gofund.me/6d981312 )

Why the campaign? because I was told that if a dozen or more people write in to ask for the same story that It is much more likely to happen.

#myalgicE #disability #canpoli #longcovid #piday

things that got even worse today. So much so that I called a friend, had a meltdown, which I talk about in the episode, and decided that I am the universe's chew toy. yeah, a little dramatic for sure. But just when I think things can't get even harder something else happens. What on earth is the Great whatsit up to?

then I put my big girl underpants on and sent out the email campaign because who knows, that could completely change things.

So You can participate in the email campaign, here's template for you. details it in the episode https://docs.google.com/document/d/1VD2zqOKxcQp7SUP06mY8slZlH1sXkKHKVPV0IfLo-uI/edit?usp=sharing

as well (Link and more information in GoFundMe update https://gofund.me/6d981312 )

Why the campaign? because I was told that if a dozen or more people write in to a large legacy news organization to ask for the same story that It is much more likely to happen.

#myalgicE #disability #canpoli #longcovid #fridaythe13 I choose to believe is good luck

In which I talk about how I only started to feel better when I realized how my pink hoping strategies were interfering with me understanding that being on the mobility scooter today or trying to get into the hyperbaric chamber we're paying impossibilities that were just going to make me worse. The kind of long-term pain especially the fibromyalgia colliding with the dyslexia and the architectural pain which creates a special kind of hell. And add to that the new motor on my scooter creating a high-pitched war which collides with the sound sensitivity portion of ME and fibro. And on top of that because of forces outside of his control haven't been able to see my physio for almost 6 weeks. And I haven't had this extent of pain nausea and pain nightmares since the COVID lockdown. now that of course got way worse because it was months. But even being three to four weeks late for physio means i have quite the cacophony of pain, amplified exhaustion, and loss of emotional resiliency

at 6:00 a.m. or so and I've been awake since 2:00. I promised myself I would document all of the stuff particularly how hard things are. This is me without the coping strategies of the previous episode. cuz pain dreams strip all that away

resiliency dampened by pain and the extent of the difficulties means that despair has caught up with me

we're a talk about the many different kinds of difficult things I'm attempting to deal with, advocacy next steps, advocacy current obstacles, and health supports obstacles. hence the title squish squashed

and the episode icon is spring blossoms! cuz I adore spring. So that helps with my head space a bit. But I'm also worried about despair. currently going to run out of GoFundMe money the beginning of April. which is terrifying. it never gets less terrifying the whole month to month GoFundMe thing

It's Valentine's Day(you'll see I'm wearing red Because I'm a big believer and celebrating whenever possible. It does a brain good!), but unfortunately disability bias issues do not take a holiday nor does the Herculean effort of staying alive. But I'm working to do that are arm floaties not the least of which is wearing red

petition presentation live stream link https://www.youtube.com/live/PN6-ewFs-00?si=UBsftv5p3FLnMc7m

although the petition has been presented we are leaving the document and its additional resources up in case anybody wants to use it as a template and also for a reference. I know everything I'm proposing saves the system massive amounts of money and problem solves disability and long viral disease deficits

https://bit.ly/Marcia_petition

https://www.thecanary.co/opinion/2025/12/19/me-void/

Also so you have it because it's my lived experience, here's my recent op-ed