@jowrotethis Late to the party, but spent my Saturday working on an Indie bookstore crawl via the Twin Cities Passport, and had a fantastic time at my annual tradition! Shopped at 13 between Wed-Saturday, and the crowds were incredible ✨
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Abbey Hauser
463 posts
Abbey Hauser
@OwningMyStory
Rare Disease Advocate | Classical Ehlers-Danlos Syndrome | Adaptive Sports Enthusiast | Collector of Quotes | Occasional Superhero | she/they
Katılım Nisan 2022
168 Takip Edilen172 Takipçiler
I'll send a free signed/personalized copy of my book MCU: The Reign of Marvel Studios (assuming you want one ack no worries if not eep) to the first 20 people who respond here (or on BlueSky) Sat. w/ a photo of them buying something from their local on #independentbookstoreday
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If my rare disease *had* to cause another spine stress fracture, at least this time I’m finally watching Buffy the Vampire Slayer and listening to @bufferingcast. s/o to @jowrotethis for mentioning it often on the @RingerVerse over the years. 10/10 obsessed.
#GlimmerChasing
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@jowrotethis spotted your book in the wild on Independent Bookstore Day! It was in the small adult books section of my favorite childhood kids bookshop in Minnesota. What a magical sight! ✨
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@ZebraBimbo @scenequeenrocks @bibipins Trial and error in training will be your best friend in solving what specifically works for you. Like what carb ratio for fuel and how often. And what you tolerate consuming while running/moving. I used a few trainings to just be for playing with that and didn’t worry about pace.
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@scenequeenrocks @OwningMyStory @bibipins I can also send you more resources/people who are chronically ill and do things like cross fit and marathons if you like.
Best luck!!
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I’m signing up to do a half marathon with pots. I’m very scared and I’ve never ran even remotely that far but I’m really hopeful that the pain I’m undoubtedly gonna feel makes merely existing easier when I’m done. Your girl will be setting presumably some sort of record for most liquid IV consumed during it tho.
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@ZebraBimbo @scenequeenrocks @bibipins Hello! Definitely check what you can carry into your race (all are different) and use your trusted electrolyte source that works for you. I use the run/walk method for non-POTS reasons but it could help there too. Food with salt can work too, or other fuel sources.
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Abbey Hauser retweetledi
"Wherever you are in your journey with your diagnosis or the one you support, you are meant to be here." - Abby Hauser (@OwningMyStory)
#RareDisease #RareDiseaseWeek2024 #RareDC2024
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@ZebraBimbo @aquariusxmars Otherwise it’s compression socks, support pillows for the plane, extra meds taken - not just waiting until fully needed -, and hoping for the best. I’ve narrowly made it a few times during a flare, but 3 hours is about the longest I’d fly in a flare too.
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@ZebraBimbo @aquariusxmars Late reply - probably not helpful now lol, but during flares I’ll use the wheelchair escort and essentially try to walk as little as possible. This includes taking the chair to the plane door too. You can ask them to stop at bathrooms too.
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August in a photo, new prescriptions edition. If you value your bank account, happiness and health - I do not recommend having c diff, norovirus, oral thrush and then rounding out your month with covid. 🙃
+ still having a rare disease
#RareDiseaseTruth #ThisIsFine #cEDS
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@OnceUponAGene @RareDiseaseDad @SeanBaumstark @NeenaNizar I might ‘technically’ be able to pass these days, but I wouldn’t feel safe. My joints feel very vulnerable and unstable in the water. I much prefer using an approved life jacket and being with others.
My adaptive kayaking ‘wet exit’ tests are always done with life jackets.
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@RareDiseaseDad @OwningMyStory @SeanBaumstark @NeenaNizar
Wondering if any of my adult disabled friends can pass a swim test?
If not- are you safe in chest deep water with coast guard approved floatation devices and a caregiver?
Roped off area in a lake
Not the open ocean
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The @CityofBellevue @bellevuewa @BvueParks
The city of Bellevue allows 7 year olds with no life jackets and no adult to swim in our most accessible public beach because they passed a "swim test" alongside a rope judged by teenage lifeguards.
🧵
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New Blog Post • MRI Musings •
“So, to my friends with chronic illness struggling with changing baselines, I see you, and we are in this together.”
#EDS #cEDS #ClassicalEhlersDanlosSyndrome
OwningMyStory.com/mri-musings
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“You can’t unknow what you already know” is another line that stuck with me. Once we know the lingo it’s hard to see where we use it and when our content stops being accessible to the general audience.
So much to reflect on today with the @VasculitisFound
Team Telomere@TeamTelomereInc
“Beware of the Curse of Knowledge” How do you ensure information is accessible in your presentations? Our Comms Coordinator attended a speakers training by the @VasculitisFound and it got us thinking about how we present information in the rare space.
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Hey, I know them! 😉
Team Telomere@TeamTelomereInc
We are thrilled to announce our newest staff member - Abbey Hauser @OwningMyStory! They will be serving as our Communications Coordinator, furthering TT’s passion for community while driving science forward. Join us in welcoming Abbey and read more here: bit.ly/Meet_Abbey!
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@rarelikeher @remember_girls @Srotberg15 @LaurenCTesta @LaurenLichten @aishuarjun @OnceUponAGene @GillianHSapia @sickle_t Of course! Sending to my networks now!
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This research is so exciting!
Team Telomere@TeamTelomereInc
@BostonChildrens shared an article this week summarizing the incredible recent research in telomere lengthening and thymidine @Naturegenet by @Agarwal_Lab and @wmannherz! Check it out here: on.bchil.org/43O8kaq #DyskeratosisCongenita #TelomereBiologyDisorder
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Can’t wait for my first handcycle ride of the season for a virtual MDBR! 🚴🏼♿️
Team Telomere@TeamTelomereInc
Although our in-person Million Dollar Bike Ride was canceled for community air quality safety, we are still riding and celebrating from home! Please tag us in your photos or use the hashtag #MDBR2023 so we can cheer you on. Donations can still be made at bit.ly/TTMDBR2023
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Totally forgot to post about it, but I was accepted into the Rising Voices 2023 program by @project_sleep ! ✨️✨️
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Looking forward to this event in less than 2 weeks!
Team Telomere@TeamTelomereInc
Thank you to our board director, Abbey Hauser, for their amazing fundraising efforts for the @MDBRide4Rare! Your dedication to raising funds for TBDs research is truly inspiring. Together, we can make a difference. 🚴♀️🧬 Donate to Team Abbey here: bit.ly/MDBRabbey
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@Nike @AFCRichmond I’m ready, but not ready.
Thanks for the ride, @jasonsudeikis, @brendanhunting, @hanwaddingham, @brettgoldstein, @JunoTemple, @nickmohammed, @phildunster, @Toheeb_Jimoh, @cristofernandez, & team @TedLasso!
#RichmondTilWeDie #TedLasso #BeAGoldFish
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Win or lose tonight, victory is believing we’ve already won. ⚽️🧣
#RichmondTillWeDie
#TedLasso
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Getting involved in policy advocacy doesn’t have to be intimidating! Join us at @EveryLifeOrg to continue getting involved or reach out to me at any time. ☀️ #EveryVoiceMatters #RareDisease #TeamTelomere
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