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ALowerhouse

@vertigogrl.bsky.social

An unintentional collector of an alphabet soup of chronic illnesses #MECFS #EDS #MCAS #POTS. Pronouns: she/her

610 Followers  |  365 Following  |  144 Posts  |  Joined: 24.07.2023  |  2.1577

Latest posts by vertigogrl.bsky.social on Bluesky

Hardcover copies of SPLINTER & ASH: CITY OF SECRETS on top of paperback copies of SPLINTER & ASH. An illustrated cover, with wonderful art by Vivienne To, shows the two main characters.

Hardcover copies of SPLINTER & ASH: CITY OF SECRETS on top of paperback copies of SPLINTER & ASH. An illustrated cover, with wonderful art by Vivienne To, shows the two main characters.

Dusting off my account to share that SPLINTER & ASH 2: CITY OF SECRETS is out now!

This series is my love letter to the fantasy adventures that I grew up on, but with a disabled princess and a nonbinary squire taking the lead in the fight to make their wartorn kingdom kinder and fairer. πŸ’™

07.10.2025 17:25 β€” πŸ‘ 20    πŸ” 10    πŸ’¬ 2    πŸ“Œ 0

Everyone, @maedayj.bsky.social is DAYS from eviction. We cannot let this happen, especially with everything going on right now. Please share widely and/or chip in if you can!!!

07.10.2025 11:03 β€” πŸ‘ 6    πŸ” 4    πŸ’¬ 1    πŸ“Œ 0

Medical expenses keep eating away at what we've collected for the move.

Need to pick the pace back up on fundraising to catch up. Been struggling with my focus lately.

Anything you can contribute helps! Thank you!!
πŸ™βš’οΈπŸ’•πŸ’ΈπŸ³β€βš§β™ΏπŸ’œ

05.10.2025 13:23 β€” πŸ‘ 49    πŸ” 57    πŸ’¬ 0    πŸ“Œ 1

unfortunately, nothing has come in lately. if possible, I'm going to be posting about this more. this need is very important.

if you can spare anything, it would really be life-changing for me.

05.10.2025 12:14 β€” πŸ‘ 17    πŸ” 17    πŸ’¬ 3    πŸ“Œ 2
Donate to Midwest/West Catastrophic Illness Fund in honor of Karrie Higgins Help Karrie Higgins's friends and family raise money for medical expenses associated with Ehlers-Danlos syndrome Catastrophic Illness. Donate today.

I am $500 from a milestone on the Help Hope Live that would help with paying for the biopsy, the consult at the U, meds, RX sunscreen & EEG! This fundraiser is scam proof because I can't even access the $ w/out a receipt & it's tax deductible!

helphopelive.org/campaign/159...

05.10.2025 13:47 β€” πŸ‘ 11    πŸ” 17    πŸ’¬ 1    πŸ“Œ 2
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Check out my list on Amazon

u might be like wow Alex that's a lot of little treats they look very pricy and you may be correct but it's my birthday month which was meant for treats

u too are cordially invited I think I've sorted out my list πŸ’• www.amazon.com/hz/wishlist/...

05.10.2025 01:51 β€” πŸ‘ 0    πŸ” 3    πŸ’¬ 0    πŸ“Œ 0

Bex was given a warning and might get EVICTED and become HOMELESS while battling cancer and trying to undergo radiation therapy

Please please please donate if you can and share!! Bex depends on us to stay housed and alive πŸ’›πŸ’› please don’t turn away

04.10.2025 18:49 β€” πŸ‘ 15    πŸ” 22    πŸ’¬ 0    πŸ“Œ 0
Me, posing to the left of a large scale golden elephant mural against a black painted wall in a bedroom. Three elephants march towards you, with a tiny baby elephant slightly concealed in the tall fern fronds that line the base.

Me, posing to the left of a large scale golden elephant mural against a black painted wall in a bedroom. Three elephants march towards you, with a tiny baby elephant slightly concealed in the tall fern fronds that line the base.

new pinned post to wrap up the year ✨

I am now booking for Oct-Nov, check out my thread below for details on commissions and design projects. Space is limited and I would love to work with you!

17.09.2025 18:10 β€” πŸ‘ 20    πŸ” 9    πŸ’¬ 3    πŸ“Œ 2
No Cats In The Library πŸ±πŸ“š | Reading Rainbow πŸ“– 🌈 | Full Episode | @Kidzuko​
YouTube video by Kidzuko No Cats In The Library πŸ±πŸ“š | Reading Rainbow πŸ“– 🌈 | Full Episode | @Kidzuko​

Reading Rainbow… is back! πŸ₯Ή

This LeVar Burton/Reading Rainbow raised human is feeling all of the library joy. We hope your kids believe they belong in books, just like you ✨

Take a look, it’s in a book πŸ“šπŸŒˆπŸ¦‹πŸŒŒ
youtu.be/gHAIjSkmnYI?...

04.10.2025 15:20 β€” πŸ‘ 2710    πŸ” 968    πŸ’¬ 45    πŸ“Œ 76
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Spoon Saving Social Media Tips and How to Resist Online The current political landscape is having a devastating impact on the health of those within the disability community. A look at how we can save spoons and leverage our unique powers to resist.

It’s been a heck of a week.

The β€œflooding the zone” strategy is damaging to nervous systems. It’s ok if you’re exhausted, you have a right to be.

Many of us with chronic illness use social media as our main connection with the world.

We use it to combat the isolation.

But it can come at a cost:

04.10.2025 02:17 β€” πŸ‘ 113    πŸ” 28    πŸ’¬ 2    πŸ“Œ 1

I haven't made any progress yet. I know all it takes is being seen by one person who wants to help, so I'm not giving up.

I am going to be resting in advance of a home blood draw scheduled by a medical mutual aid group for the tenth. I will be less active.

CA/Ven: kookysnell
ko-fi.com/moriende

02.10.2025 11:45 β€” πŸ‘ 13    πŸ” 16    πŸ’¬ 1    πŸ“Œ 2

Hey, #MedSky & #SciSky! New text from Elsevier out today, "The Scientific Basis of Fatigue", with multiple chapters on different diseases, including #MECFS, COVID, Parkinson's, stroke and MS.

Proud to be the co-author of the #MECFS chapter with authors from Mayo and Bateman-Horne! More info:πŸ§ͺ

01.10.2025 17:16 β€” πŸ‘ 135    πŸ” 48    πŸ’¬ 8    πŸ“Œ 3
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Gov Shutdown: What This Means For Healthcare | Patreon Patreon is empowering a new generation of creators. Support and engage with artists and creators as they live out their passions!

www.patreon.com/mattbc/event...

Tonight at at 8PM eastern β€” answering your questions about what the government shutdown has to do with healthcare, and what it means for our access to medical care

01.10.2025 22:35 β€” πŸ‘ 23    πŸ” 10    πŸ’¬ 1    πŸ“Œ 0

I feel this way too. We need connection but have a limited capacity & need to connect in ways others don’t understand or respect. So they leave us. Cycle continues. it’s a terrible place to be…. I’m so sorry.

01.10.2025 21:28 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 1    πŸ“Œ 0

Bex needs $4,100 as soon as possible for rent, life saving radiation treatment that is WORKING on their cancer but paused until payment, and food.

Can we do this for them? Share and donate a bit if you can πŸ’›πŸ’« everything adds up!

ko-fi.com/rebekamash

www.paypal.com/paypalme/the...

01.10.2025 12:31 β€” πŸ‘ 20    πŸ” 25    πŸ’¬ 0    πŸ“Œ 0

Your worth is not defined by your size, your job or your health status.

It’s not defined by what you’re able to contribute to capitalism.

You’re worthy just as you are.

You have value, you are loved and you shouldn’t ever let anyone tell you otherwise. /end

01.10.2025 03:38 β€” πŸ‘ 54    πŸ” 13    πŸ’¬ 1    πŸ“Œ 0

The disability community needs your solidarity to fight the tariff threat to prescription drugs.

Trump claims he will reduce drug prices by 1000%... which is mathematically impossible.

He's putting a 100% tariff on drugs made outside the US. That IS mathematically possible & it will devastate us.

30.09.2025 22:29 β€” πŸ‘ 97    πŸ” 30    πŸ’¬ 1    πŸ“Œ 0
Video thumbnail

🎢 Take a look, it's in a book 🎢

πŸ₯Ή After nearly 20 years... Reading Rainbow is returning to motivate, help, and encourage kids to become avid readers with new episodes, new friends, new projects, and of course... new books! Make sure to follow the rainbow πŸ“šπŸŒˆ

#FollowTheRainbow

29.09.2025 15:06 β€” πŸ‘ 5025    πŸ” 1994    πŸ’¬ 237    πŸ“Œ 608
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Through the Lens of Disability: A Journey and Guide To Owning a Century Home Homeownership is a challenge. A thing many people wouldn't even dream of accessing. Something I didn't dream of. Until I accidentally learned it was possible.Living on SSDI, limited in my capacity by ...

hi you may be new and maybe you too dream of escaping where you are but don't know where to start

I wrote a free disability centered guide to century home ownership which you can pick up for free here (it's pay what you can)

maybe, this resource can help you venaalex.gumroad.com/l/qwrrvr

27.09.2025 17:29 β€” πŸ‘ 3    πŸ” 4    πŸ’¬ 2    πŸ“Œ 1

Utah friends!

Join me Tuesday 9/30 at University of Utah's Marriott Library. I'll talk about book banning, being a preacher's kid whose books are banned & "The Power of Story to Unite US."

There will be time for schmoozing afterward. I'm happy to sign any books that you bring from home! πŸ“šβ™₯οΈπŸ‡ΊπŸ‡Έ

29.09.2025 01:03 β€” πŸ‘ 39    πŸ” 17    πŸ’¬ 0    πŸ“Œ 1
Donate to Midwest/West Catastrophic Illness Fund in honor of Karrie Higgins Help Karrie Higgins's friends and family raise money for medical expenses associated with Ehlers-Danlos syndrome Catastrophic Illness. Donate today.

Getting more of my care transferred back to the U (my Lynch Syndrome specialist is at Holden Cancer Center) after that biopsy result + gotta pay off the biopsy!

Donations = tax deductible. I can't even TOUCH the funds w/out a medical receipt! HHl = 501c3.

helphopelive.org/campaign/159...

29.09.2025 11:07 β€” πŸ‘ 9    πŸ” 12    πŸ’¬ 1    πŸ“Œ 0

If you’re struggling with Long Covid, MCAS, POTS or other energy limiting chronic illness… I’ve put together a series of guides to try and help.

These conditions are poorly understood and more often than not we end up learning from our fellow patients.

Mega 🧡 of resources

26.09.2025 03:21 β€” πŸ‘ 486    πŸ” 231    πŸ’¬ 11    πŸ“Œ 7

If I could get non-autistic people to understand one thing, it wouldn't be that I have support needs. It would be that YOU have support needs.

25.09.2025 15:54 β€” πŸ‘ 604    πŸ” 204    πŸ’¬ 17    πŸ“Œ 16

Disability accommodation represents a failure to plan and build accessible infrastructure β€”work structures, public spaces, events.

We force people thru appts, paperwork, mtgs w their boss and HR…bc of structural failures. The work of being included too often falls to individual disabled people.

25.09.2025 17:01 β€” πŸ‘ 245    πŸ” 85    πŸ’¬ 1    πŸ“Œ 16
CTA: Telehealth, Yes, Again
by Matthew Cortland
09/24/2025
Shouldn't Need To Be A Lawyer Patreon.com/mattbc

CTA: Telehealth, Yes, Again by Matthew Cortland 09/24/2025 Shouldn't Need To Be A Lawyer Patreon.com/mattbc

There's a Medicare telehealth cliff at the end of this month that will impact other health insurance plans beyond just Medicare.

This post ‡️ will walk you through how to effectively advocate for telehealth in ways that actually influence the outcome...

www.patreon.com/posts/139596...

24.09.2025 23:36 β€” πŸ‘ 93    πŸ” 57    πŸ’¬ 1    πŸ“Œ 4

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

23.09.2025 23:51 β€” πŸ‘ 52    πŸ” 31    πŸ’¬ 0    πŸ“Œ 0

❀️your resilience is admirable❀️

🧑your beauty is breathtaking🧑

πŸ’›you shine brighter than the sunπŸ’›

πŸ’šyou are worthy of being cared forπŸ’š

🩡you are enough to be loved right🩡

πŸ’™you are so important to someoneπŸ’™

πŸ’œyour feelings are always validπŸ’œ

🩷you deserve the whole wide world🩷

23.09.2025 03:59 β€” πŸ‘ 245    πŸ” 76    πŸ’¬ 0    πŸ“Œ 2

Great job from Violet Affleck!

23.09.2025 22:07 β€” πŸ‘ 112    πŸ” 18    πŸ’¬ 1    πŸ“Œ 0

hey folks have a few dollars you can spare for my good friend Karrie?

22.09.2025 23:45 β€” πŸ‘ 0    πŸ” 2    πŸ’¬ 0    πŸ“Œ 0
Donate to Midwest/West Catastrophic Illness Fund in honor of Karrie Higgins Help Karrie Higgins's friends and family raise money for medical expenses associated with Ehlers-Danlos syndrome Catastrophic Illness. Donate today.

I still have my Help Hope Live. Donations=tax deductible $ can ONLY be used for medical expenses! The campaign so we could recover from disaster enough to flee to safety: gone.

I'm a victim of a serial predator & need therapy+meds.

helphopelive.org/campaign/159...

21.09.2025 11:27 β€” πŸ‘ 7    πŸ” 6    πŸ’¬ 0    πŸ“Œ 0

@vertigogrl is following 20 prominent accounts