Shayla Maas || Eerie-nne

Episode 05 — Ehlers-Danlos Syndrome – quick tips with Eir and Laura In this episode, we are going to be talking about Ehlers-Danlos Syndrome, or EDS. There are many types of EDS, but they are considered to be the same family of disorders because they all stem from …

Here's my podcast episode with an overview of EDS and my & SD's (Laura, in the episode, but prefers SD these days) tips on living with EDS

sicktipsandtricks.wordpress.com/2018/05/31/e...

The end of federal enforcement of special ed laws. Some states - including MN - will likely be ok. But a lot of disabled kids in a lot of states are going to lose the education that federal law and decades of jurisprudence say they are owed.

Reaching out to the social media hivemind for a hope that someone has an answer for me.

Do any of y'all who get (or give!) #IVIG infusions have experience with NON-Demerol methods of controlling rigors reactions? Particularly interested in hearing your experiences using tramadol and/or clonidine./1

The annual pumpkin display at the entrance of Governor Pritzker’s personal residence on Astor Street. He is the pumpkin king. Illinois produces the most pumpkins, including canned, than any other state in the U.S., twice as many as the next five states combined.

No Democrat should vote to keep the government open unless ACA funding is restored for the millions of Americans at risk of losing health coverage next year.

Remember that this funding is on the chopping block because Trump and Republicans want to give the richest Americans a giant tax cut.

I appreciate that very much!

I do, in fact, see several very recent posts in that hashtag!

I would have known what hashtags to use on xitter, but I've not had the mental bandwidth to rebuild my network as actively here or on other socials

And yes, I'm posting some variation of this thread on a few different socials, because I want as wide a pool of potential responses as I can get. 7/7

My prior regimen was tylenol 650mg, benadryl 50mg, and ativan 1mg as pre-meds, then right at the start of running the IVIG I'd get a dose of meperidine 12.5mg, and then another of the same about halfway through. Yes, I was loopy af by the end of it, but I almost never had breakthrough reactions. /6

He has come up with the idea of using tramadol and clonidine to try and control the rigors. I'm nervous, but I desperately need to restart my infusions, so I'm hoping someone out there can give me some personal anecdata about how these drugs work for controlling the reactions. /5

My care team decided I should see a new immunologist (previously had been seeing hematology for my infusions), and while this guy seems very competent, he admits he's got no experience with meperidine (which is still on back order until at least October, anyway).

(I talked abt this a bit in May.)/4

My rigors reactions are particularly awful, and I have Ehlers-Danlos Syndrome to boot, so when I shake that violently I quite literally shake my joints apart into multiple traumatic dislocations. /3

I've been receiving IVIG every 4 weeks for the last almost 13 years, until May of this year when my infusion center informed me that there was a nationwide shortage of meperidine (Demerol) and that they couldn't give it to me without it. /2

Reaching out to the social media hivemind for a hope that someone has an answer for me.

Do any of y'all who get (or give!) #IVIG infusions have experience with NON-Demerol methods of controlling rigors reactions? Particularly interested in hearing your experiences using tramadol and/or clonidine./1

So if you want this to move, the ask has to be "include telehealth in any CR deal"

YouTube video by TVBS Big Ballet

If fat ballet is your thing btw, there's a docuseries that's roughly 10 years old about an all fat cast of Swan Lake.

I have Slack, I just only remember to open it every 3.8 months

I promise, no matter where you live, your local food pantry needs volunteers. This is a solid suggestion

My mother runs the food pantry in my hometown. She NEVER has enough help, and she’s been there every week For Years.

I help when I go see her.
You can do this.
And it legit helps other folx.

Luckily, Sinclair has a helpful database of all their stations, so you can see if they're operating in your area and respond accordingly.

sbgi.net/tv-stations/

Every time I feel like I know a lot about the rise of fascism in Germany, I learn something new.

If you don’t feel like writing to Disney but do want to complain to someone, this is another great option. In LA, KTLA is nexstar.

A pitch for those of you canceling Disney+/Hulu this week would be to use that cash and subscribe to PBS/PBS Passport.

Public media is foundational to our democracy and supporting @pbs.org is just about the best value for your dollar. Plus, there are so many British mysteries!!!

40 looks good on you! Welcome to the decade of "my field of fucks doth gleefully lie fallow" :D

This is all truly mind-blowing. The impact of cowardly corporate interests kowtowing to naked authoritarian power hits home today like a meteor falling on DC or Times Square. Signs are everywhere. We are, today, not an entirely free society.

A free and democratic society cannot silence comedians because the President doesn’t like what they say.

This is an attack on free speech and cannot be allowed to stand.

All elected officials need to speak up and push back on this undemocratic act.

Mr Measured: “man my eyes are tired tonight”

8 yo, without missing a beat: “oh you gotta dim your mind switch”

*walks away*

Get back here and explain yourself please??????

Smaller Cake Mixes & How to Adjust Cake Mix Recipes What to add to cake mix to make it 18.25 oz? I'm sharing my charts, solutions and my thoughts How to Adjust Cake Mix Recipes.

I remember when these cake mixes used to be 18.25 oz! Here's some tips on how to adjust: rosebakes.com/smaller-cake...

Just spent $210 on COVID vax for an Oregon Medicaid beneficiary who cannot wait for the Governor of Oregon to do her fucking job.

Anyway, I'm on a bit of a subscriber drive over at patreon.com/mattbc so if this sort of thing is helpful to you, and you can toss in a couple of bucks a month,,..

wait does this mean I could be sending you IG reels? >.>