@ahimsa_pdx@disabled.social
@ahimsa_pdx@disabled.social avatar

ahimsa_pdx

@ahimsa_pdx@disabled.social

Vegetarian, book lover📚 Living with ME/CFS and Dysautonomia since 1990 ♿️ She/Her

Please use #AltText on images/GIFs❤️

Yes, I'd love to see a photo of your cat😻

Avatar photo: Old photo of my cat, tabby with white chest & paws. Banner photo: Trees in a park with green leaves.

Just my posts, no boosts = https://justmytoots.com/@ahimsa_pdx?public_only=true

#MEcfs #PwME #Dysautonomia #POTS #LongCovid #Disability #Accessibility

This profile is from a federated server and may be incomplete. Browse more on the original instance.

Kaonarose, to random
@Kaonarose@disabled.social avatar

Positive news for the day: The doctor filled out forms for me to get an accessible parking permit! Fingers crossed that it gets approved. This would be so majorly helpful for me, particularly on high pain days! I don't drive, but sometimes, I get rides places and all the walking can make my pain worse.

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

@Kaonarose Crossing my fingers that this permit is approved! 🤞❤️

KydiaMusic, to animals
@KydiaMusic@mastodon.social avatar

YOU CAN’T HANDLE THE FLOOF!

Happy Thorsday

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

@KydiaMusic Maybe not, but I want to try! 😻

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

@KydiaMusic Oh no! 😔 Not fun for either of you!

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

This short video (about a minute) from asks people with ME/CFS, "How long did it take you go get diagnosed?"

(ME/CFS = myalgic encephalomyelitis / chronic fatigue syndrome)

https://www.youtube.com/watch?v=tnzz2QwwaMs

I'm "lucky" because it only took me 5 years to get a diagnosis vs. an average of over 8 years (from the 417 responses they got).

What's your answer? 🤔

1/2

@mecfs

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

You don't have to be an ME/CFS or Long Covid patient to help us improve medical education.

Join 's "Teach ME, Treat ME" campaign. Contact your doctor to tell them about the Mayo Clinic CME:

https://millionsmissing.meaction.net/treatme/

Learn more at https://millionsmissing.org

2/2

@mecfs
@longcovid

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

This amazing embroidered piece (by @lia_pas) is being showcased by Opera Mariposa for this year's "Benefit & Awareness Month"

From their website:

"Until June 1, 2024, you can enter to win art postcards and a book featuring Lia’s exquisite creations – all in support of the ME | FM Society of BC!"

(ME = Myalgic Encephalomyelitis, FM = Fibromyalgia)

https://operamariposa.com/art-showcase/lia-pas/she-breathed/

@mecfs

amymyoung, to random
@amymyoung@mastodon.online avatar

Today's word of the day in

Gapjagwej (gap·cha·gwech)

Gapjagwej is a robin.

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

@amymyoung

I hope I'm not being too picky (I love reading the word of the day) but isn't that a European robin in the photo?

https://www.birdsandblooms.com/birding/european-robin-vs-american-robin/

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

Only a few days left until May 12, World ME Day!

My advocacy actions may be small, but I'm trying to help spread the word! 😊

If you want to join in the MEAction group has a list of suggestions in this "Show Up From Home" toolkit (Google doc):

https://docs.google.com/document/d/163DeV93SRYNm7Aq2zC_uoaU7NIJmmydaJIi4BQDQDew/edit#heading=h.vyt35j7pvgd3

1/n

@mecfs

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

One idea is to send a message to your doctor to tell them about the Mayo Clinic CME

has a template for what to say:

https://docs.google.com/document/d/15jJZ3-eHQq0pVsshfK-E0so2ucvrBWAzK8en82Xfnfo/edit

You can also print the Mayo Proceedings document (8 pages) and bring it to your next doctor appointment. I gave a copy to my cardiologist. I know he read it because he referred to it in my chart notes! 😁

Link to Mayo doc and CME:

https://millionsmissing.meaction.net/treatme/

2/n

@mecfs

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

I gave this paper to my new primary care doctor recently (old doctor retired) During my medical history he said, "You must be a severe case."

I said, "I'm moderate. Severe cases are bedbound."

Like most doctors he didn't realize how disabling ME/CFS can be.

Doctors need accurate information! And roughly half of Long Covid cases meet the ME/CFS diagnosis so it's even more important now.

Please join the campaign ❤️

https://www.meaction.net/2024/05/07/millionsmissing-week-is-here-teachmetreatme-in-action/

3/n

@mecfs

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

If you have the financial means (and only if you are not struggling yourself!!) please consider making a donation to

Thank you ❤️

https://www.meaction.net/millionsmissing-fundraiser-2024/

4/n

@mecfs

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

From #MEAction:

"We are excited to announce the kick-off of #MillionsMissing 2024 – our ongoing campaign to Teach ME and Treat ME by educating medical providers across our nation’s hospital systems and medical schools about myalgic encephalomyelitis (ME)."

https://www.meaction.net/2024/05/07/millionsmissing-week-is-here-teachmetreatme-in-action/

See link for upcoming events.

1/3

@mecfs
@longcovid

#MEcfs #LongCovid #TeachMETreatME #MedEd #MedMastodon

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

If you can, tell your doctor(s) about the Mayo CME (continuing medical education) for ME/CFS. There's an email template available that has a link to the CME:

https://docs.google.com/document/d/15jJZ3-eHQq0pVsshfK-E0so2ucvrBWAzK8en82Xfnfo/edit

I sent this info to my doctor using the messaging system (MyChart) that our clinic uses for communication.

2/3

@mecfs @longcovid

#MEcfs #LongCovid #TeachMETreatME #MedEd #MedMastodon

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

This toolkit from lists all the different "Show Up From Home" actions that you can do:

https://docs.google.com/document/d/163DeV93SRYNm7Aq2zC_uoaU7NIJmmydaJIi4BQDQDew/edit#heading=h.vyt35j7pvgd3

And here's a link for anyone reading this who wonders, "What is ME/CFS?"

Roughly half of Long Covid patients meet the ME/CFS diagnostic criteria.

https://www.meaction.net/learn/what-is-me/

3/3

@mecfs @longcovid

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

Here's a bonus post for this thread because I wanted to post this screenshot with a selfie of Jaime Seltzer! 😁💪

@mecfs @longcovid

lia_pas, to mecfs
@lia_pas@vis.social avatar

'she breathed' (2018) 🫁
For , Opera Mariposa is showcasing this embroidery by me, a multidisciplinary artist with . Check it out with exclusive insights and enter to win 'she breathed' art postcards til June 1! https://operamariposa.com/art-showcase/lia-pas/she-breathed/

ahimsa_pdx, (edited )
@ahimsa_pdx@disabled.social avatar

@lia_pas That is such a beautiful piece! 😍

It took me a while to figure out that BA Month stands for "Benefit & Awareness Month" so I'm sharing this link with more info.

https://operamariposa.com/benefit-awareness/#calendar

Opera Mariposa is helping to raise money for the ME | FM Society of BC (British Columbia).

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

@lia_pas Completely understand!

I may do a post of my own about this tomorrow. Some folks follow me without boosts and I'd love for them to see your piece along with the info from Opera Mariposa. 😁

meganL, to cycling
@meganL@mas.to avatar

In guarded good news, I have an appointment to meet one of the board members of Davis Food Co-op to demonstrate how the "lightning bolt" racks are not accessible. (She offered to meet with me in response to a customer feedback form I sent in.)

I'm going to try to pile my recumbent bike onto the cargo quad so I can bring both over and illustrate the different types. I need to print out some photos I've taken of other cycles at those racks, too.

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

@meganL Wishing you luck. I hope she listens!

NunavutBirder, to worldwithoutus
@NunavutBirder@mas.to avatar

So, this was released today. My third stamp with Canada Post. Qarlinngua (The pants). And technically my second stamp with a family member in it, as the tiny figure in it is my son Travis. Now for one with Hilary in it.

I’ve very proud of all of these, beyond the cache. They are about my home, and family. And also my family has a long history with the Post Office, 101 years. My grandfather, father, and brother were all postmasters in Roblin.

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

@NunavutBirder Congrats!

The photo is great 😁

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

Here's the latest News in Brief from the Science for ME forum for week starting April 29:

https://www.s4me.info/threads/news-in-brief-may-2024.38393/#post-530486/

The news summary includes articles, videos, research, advocacy, coming events, and more.

⭐️ One highlight: The Time100Health list includes several people working on ME/CFS and Long Covid (Jaime Seltzer, Avindra Nath, Ziyad Al-Aly, Akiko Iwasaki, and others) ⭐️

https://www.s4me.info/threads/time100-health-jaime-seltzer-postviral-patient-advocate.38357/

@mecfs @longcovid

moxxi, to Dogs
@moxxi@mastodon.social avatar

Thou might think thou shall pass but, um, thou shall not pass, m'kay.

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

@moxxi I could not pass such epic cuteness without asking the human if I could pat her!

❤️ sending virtual pats ❤️

heatharcadia, to Birds
@heatharcadia@worldtravel.photos avatar

When I first moved to Oregon 23 months ago, I caught a glimpse of a bird I didn't recognize hanging out in my backyard. Without getting a picture of it, I tried to search online to find out what I saw. The results told me it was a Black-headed Grosbeak, but I never saw it again, so I assumed I had mistaken what I saw and actually had seen a robin that had something in its beak... Until today, when this pair showed up at my feeder.

A bird with a peach chest, light brown wings flecked with white, and a large, tan beak, perched on a fencepost while rain falls around it.

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

@heatharcadia Nice that you got a photo of both of them!

I've seen Black-headed Grosbeaks from time to time in my back yard. I think I see Evening Grosbeaks more often.

https://www.allaboutbirds.org/guide/Evening_Grosbeak/id

ahimsa_pdx, (edited ) to oregon
@ahimsa_pdx@disabled.social avatar

Edit - I fixed the date! Sorry for the error!

Reminder for Oregonians: Primary is Tuesday, May 21!

Registered voters should have already gotten a voter's pamphlet and ballot, but in case it got lost in the mail here's a reminder 😁

Here's the OPB ballot guide for 2024:

https://www.opb.org/election-2024/

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

Related news:

"More than 9,000 Multnomah County voters to receive new ballots after elections office error"

Gift link = https://www.oregonlive.com/politics/2024/05/more-than-9000-multnomah-county-voters-to-receive-new-ballots-after-elections-office-error.html?gift=1cabe7d0-d4a0-4d62-af26-8e4c12fed5c0

"Multnomah County elections officials will mail new ballots to 9,300 voters after omitting a proposed Metro Zoo bond from the ballots they sent to those people.

The voters who received the incorrect ballots live in three precincts in and around Gresham."

#USPol #Oregon #Portland #Elections #Ballots #GiftArticle

vlrny, to random
@vlrny@disabled.social avatar

I have discovered, when you are mentally exhausted and bordering on non-verbal, the Marge Simpson disappointed/annoyed noise can convey quite a lot.

Marge Simpson GIF Marge Simpson scowls and makes unhappy noise

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

@vlrny 😂

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