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erubie.bsky.social
@erubie.bsky.social
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erubie.bsky.social
I also illustrated the less-than-straight path to finally getting my hEDS diagnosis at 29. This diagnostic delay is all too common for people with EDS. Full talk: www.ehlers-danlos.com/resource/dia...

@ehlersdanlos.bsky.social
A zoomed out photo of two side-by-side dry erase boards covered in blue, purple, green, and black writing with arrows between many different parts representing different symptoms, tests, treatments, and diagnoses.
May 4, 2025 at 3:57 AM
erubie.bsky.social
Age at Dx: 29
Age I remember someone first telling me I was hypermobile: 12
# Specialties Seen: 16+
# Specialists Seen: 22+
# Drs who suggested I might have EDS/be on hypermobility spectrum but didn’t diagnose &/or told me I didn’t have hEDS: 3
Time between 1st mention of EDS to diagnosis: 1.5 yrs
A baseball card-style image with a picture of Emily filling the majority of the image, a red box below reading Emily Rubenstein in white lettering, and a zebra head where the team logo would normally go. The background is wood grain. Emily is a white woman with long auburn hair wearing a blue sleeveless sweater.
May 4, 2025 at 3:57 AM
erubie.bsky.social
EDS Awareness Month Day 2: Boarded my flight home from DC (more about my trip to come). My ReadiMask caught the eye of a woman wearing a surgical. She asked me about it & shared that she works in a hospital & many provided masks don't fit her. I gave her a ReadiMask & thanked her for still masking❤️💪
Emily is on an airplane wearing a neck brace and a bright yellow ReadiMask stick-on mask with a SIP valve installed on it. She's smiling beneath the mask and wearing a gray t-shirt.
May 2, 2025 at 4:42 PM
erubie.bsky.social
EDS/HSD Awareness Month Day 1: Starting things off by resharing a picture from yesterday, when I had the opportunity to represent @lccampaign.bsky.social & join LC advocates in attending Senator Collins & @murray.senate.gov's bipartisan appropriations hearing on biomedical research. 1/x
A selfie of seven Long COVID advocates sitting in a row in a U.S. Senate hearing room. They are all wearing masks and Long COVID teal shirts.
May 1, 2025 at 5:54 AM
erubie.bsky.social
Meaningful morning with fellow #LongCovid advocates at Sen Collins & @pattymurray.bsky.social's bipartisan biomedical research hearing. Heartening to hear Senate Approps GOP & @senateapprops.bsky.social's questions & bipartisan support for biomedical research.

@lccampaign.bsky.social
A selfie of seven Long COVID advocates sitting in a row in a U.S. Senate hearing room. They are all wearing masks and Long COVID teal shirts.
April 30, 2025 at 10:57 PM
erubie.bsky.social
Left messages tonight!
A screenshot of Emily's call history showing calls to three numbers with NYS area codes and an additional number listed as "New York State Assembly!"
April 29, 2025 at 6:26 AM
erubie.bsky.social
Left my messages. Have you?
@covidadvocacyny.bsky.social @jews4maskrights.bsky.social
A screenshot of Emily's call history showing calls to three numbers with NYS area codes and an additional number listed as "New York State Assembly."
April 29, 2025 at 5:39 AM
erubie.bsky.social
Just made my calls to Senator Brouk and Assembly Member Lunsford. New Yorkers, please make sure to call TODAY & encourage your state reps to oppose the updated mask restriction language!
A screenshot of Emily's call history showing calls made to numbers (518) 455-5784 and (518) 455-2215, both listed as New York numbers.
April 24, 2025 at 5:58 PM
erubie.bsky.social
Had a blast guest facilitating @thewashingtonpost.bsky.social Disability Coalition's first quarterly book club! Yesterday's discussion was about @sfdirewolf.bsky.social's Disability Visibility—the perfect book to kick things off with.
Emily and Katherine smile in front of a wood-paneled wall with The Washington Post on it in branded black lettering and back-lit. Emily, a white woman with long auburn hair, is wearing a colorful shawl and a black mask, and she is holding up a copy of the book Disability Visibility. Katherine, also white, is wearing a black crew neck sweatshirt with her short, light brown hair pulled back.
April 22, 2025 at 4:11 PM
erubie.bsky.social
A friendly reminder that Alliant Biotech, who sells ReadiMasks, gave me a reusable 25% off code to share with you all: EMILY251Z4VFO

Also, until April 20, @bonafidemasks.bsky.social is having a sitewide 25% off sale using code SPRING25. I love their selection of KN95 colors!

#evermasking
Emily is on an airplane smiling beneath her mask. She is wearing a yellow stick-on N95 mask, a blue and white neck brace, and a Washington Capitals hat.
April 13, 2025 at 3:47 PM
erubie.bsky.social
Thanks to masking, I was able to hit up our hometown late night spot, Fairport Hots, to get some food to go. Ah, nostalgia.

Continue calling your NYS reps to keep anti-mask legislation out of the budget!

@covidadvocacyny.bsky.social's toolkit: bit.ly/StopMaskBanNY

@jews4maskrights.bsky.social
Emily is wearing a winter hat and coat and a black KN95 mask. She's smiling in front of the order counter, and the menu is posted on the wall behind the counter on multiple panels.
April 11, 2025 at 1:20 AM
erubie.bsky.social
Today's 2nd hometown outing brought to you by masking: the flagship Pittsford @wegmansofficial.bsky.social! Nowhere like it❤️

Continue calling your NY reps & asking them to keep anti-mask legislation out of the budget: bit.ly/StopMaskBanNY

@jews4maskrights.bsky.social
@covidadvocacyny.bsky.social
Emily is standing in front of the inside entrance to Wegmans. She's wearing a black KN95 mask and smiling in front of a banner with veggies that says "Welcome." There are food displays behind her.
April 10, 2025 at 1:47 AM
erubie.bsky.social
Today's outing brought to you by masking: a local yarn store in Fairport, NY, right by the Erie Canal, where I bought some absolutely gorgeous local yarn!

NYers, remember to keep calling your state reps to demand #NoNYMaskBan!

@covidadvocacyny.bsky.social's toolkit: bit.ly/StopMaskBanNY
Emily stands inside a yarn store with colorful skeins and sample projects surrounding her. She's wearing a black mask. She's smiling beneath the mask as she hugs a brown paper bag full of yarn.
April 9, 2025 at 10:12 PM
erubie.bsky.social
With protection of a mask, I'm able to stop by Java's, my fav Rochester cafe. NYSers, make sure we can all continue to frequent our fav indie spots by calling your reps & requesting they oppose anti-mask legislation!
bit.ly/StopMaskBanNY
@jews4maskrights.bsky.social
@covidadvocacyny.bsky.social
Emily is wearing a black mask and a hat and warm coat with long auburn hair showing. She's holding up a blue cup that says "Java's since 1992." She's smiling beneath her mask, and the cafe menu is on the wall behind her.
April 8, 2025 at 8:00 PM
erubie.bsky.social
Outside the airport on my layover to upstate NY enjoying Nathan's, and I just made today's calls to my hometown assembly member and state senator. The senator's office confirmed that every call helps, so make sure to get your calls in before 5 pm ET today—especially anyone upstate!!

#NoNYMaskBan
Three Nathan's boxes sit on a stone bench in front of a brown paper bag with Nathan's branding. The boxes have the Nathan's logo and say "the flavor of New York."
April 7, 2025 at 8:21 PM
erubie.bsky.social
Heading home to visit family in upstate NY w my ReadiMask & @sipmask.bsky.social to keep me safe & hydrated. Help make sure this isn't the last time I travel to NYS before anti-making legislation passes through the budget: covidadvocacyny.org/stopmaskbanny

#NoNYMaskBan @covidadvocacyny.bsky.social
Emily sits on an airplane wearing a stick-on N95 mask with a sip valve installed on it. Emily is wearing a neck brace, smiling beneath her mask, and pointing to her mask.
April 7, 2025 at 5:23 PM