Alone LL
LightNews LightNews
banner
ladylonghaul.bsky.social
Alone LL
@ladylonghaul.bsky.social
1.2K followers 2.3K following 1.4K posts
Born 324 ppm. small spoons & sensory spaces. 🥄🎧

#ADHD #hEDS #LongCovid #MCAS #pwME #Migraine #POTS #PsoriaticArthritis #Tinnitus #Disability #Adoptee #Climate

ko-fi.com/ladylonghaul

LongCovidKids
Awareness Banner
5 years since Long Covid Changed Lives
Posts Replies Media Videos
ladylonghaul.bsky.social
Image of the globe tilted taken from above the North Pole offset to the right of center in the frame. Globe and background are subtle muted shades of grey representing the muted life of a patient with Myalgic Encephalomyelitis who often can’t tolerate light or color when in more severe states. Title of image reads World ME Day 2025 in black. There’s a circle outline surrounding ME - the logo for the World ME Alliance.
May 13, 2025 at 2:19 AM
ladylonghaul.bsky.social
bsky.app/profile/lady...
Image of the globe tilted taken from above the North Pole offset to the right of center in the frame. Globe and background are subtle muted shades of grey representing the muted life of a patient with Myalgic Encephalomyelitis who often can’t tolerate light or color when in more severe states. Title of image reads World ME Day 2025 in black. There’s a circle outline surrounding ME - the logo for the World ME Alliance.
May 13, 2025 at 2:14 AM
ladylonghaul.bsky.social
Image of the globe tilted taken from above the North Pole offset to the right of center in the frame. Globe and background are subtle muted shades of grey representing the muted life of a patient with Myalgic Encephalomyelitis who often can’t tolerate light or color when in more severe states. Title of image reads World ME Day 2025 in black. There’s a circle outline surrounding ME - the logo for the World ME Alliance.
May 13, 2025 at 2:09 AM
ladylonghaul.bsky.social
@maxwellfrost.bsky.social @frost.house.gov @sanders.senate.gov @ayannapressley.bsky.social @pressley.house.gov @aoc.bsky.social

As one of the #NotRecovered, I’m sending out a
#DisabilitySOS for the #MillionsMissing who’re #StillSickStillFighting on #WorldMEDay

@meactnet.bsky.social for more info
Image of the globe tilted taken from above the North Pole offset to the right of center in the frame. Globe and background are subtle muted shades of grey representing the muted life of a patient with Myalgic Encephalomyelitis who often can’t tolerate light or color when in more severe states. Title of image reads World ME Day 2025 in black. There’s a circle outline surrounding ME - the logo for the World ME Alliance.
May 13, 2025 at 1:33 AM
ladylonghaul.bsky.social
Thursday afternoon: there’s been help of all kinds from small to large donations❣️

Still a ways to go to clear all hurdles - need at least 630 to meet original goal of 500 + 10% transfer fees + rent late fee

✨630✨ still needed URGENTLY of (1600 + 110 + 100)

140 compounded MCAS meds

190 utilities
a light tealish blue background with a coffee emoji followed by a link typed out to donate: ko-fi.com/LadyLonghaul ko hyphen fi dot com slash LadyLonghaul
May 8, 2025 at 9:08 PM
ladylonghaul.bsky.social
Received some donations since posting the update❣️

Thank you #NEISVoid #HelpSky #MAVoid❣️

665 OVERDUE RENT DEADLINE 1 Hour ⏰

190 utilities 💡
140 adjusted MCAS meds total 💊

#MutualAidBoost
#HelpFolksLive2025 #KeepPeopleHoused #DisabilitySOS #MEAwarenessMonth #LongCOVIDAwareness #EDSAwarenessMonth
ID: image is banner-sized cropped from flyer design by @neoOdist featuring background that’s a cropped photo of teal-hued sandy beach by Amy Humphries on Unsplash. Banner features drawing of small white coffee cup on a saucer with coffee steaming on the left next to web address to the right. Alt Text: ko dash fi dotcom slash LadyLonghaul
May 8, 2025 at 6:12 PM
ladylonghaul.bsky.social
Found a four
Dorothy, Blanche, Rose & Sophia seated side-by-side on a couch in their Florida condo as Dorothy appears to point at a TV offscreen. Whatever they’re looking at seems to have most of them a bit stunned with Blanche & Rose’s mouths slightly open. Sophia is tight lipped and stoic with a hint of surprise behind her round glasses.
May 3, 2025 at 2:37 AM
ladylonghaul.bsky.social
Requesting help for immediate medical expenses, including $895 needed ASAP for vascular ultrasound & specialist + transportation + other copays, bills

#HelpFolksLive2025 #HelpSky #SignalBoost #MillionsMissing #DisabilityCrowdfund #MEAwareness #LongCOVIDAwareness #NotRecovered #COVIDisVascular
Screenshot of Estimate for Copay and Total Fees for Vascular Ultrasound and Specialist Physician visit due at Check-in 510 Copay due at Check-in Specialty Care $60 Diagnostic X-Ray $450 Details Estimated Fees $953 within Low $862 to High $967 Total fees $953 Physician fees $953 Insurance covers -$443
April 28, 2025 at 8:16 PM
ladylonghaul.bsky.social
Graphic is mostly large bold black capitalized letters with grey shadows that read Cure Long Covid Now. There are 4 small drawings at the bottom of the image depicting a saline bag partially filled with teal fluid, syringe filled with teal liquid, white pill container with a teal label that’s printed with Rx in black and a teal Long Covid Awareness ribbon. A series of grey text boxes at the top of the image have small bold black text that reads Millions suffering. Infections & reinfections. No mitigations. No cure.
March 16, 2025 at 12:25 AM
ladylonghaul.bsky.social
Grey text in bold all capitalized letters reads Stand With Long Covid Patients with teal broken heart where the o in the word long would be. Also in teal is the word Today in a hand-drawn script style font. A block logo made from the letters L and C in grey and teal is offset in the upper right of image. Background is dark grey to black gradient.
March 16, 2025 at 12:13 AM
ladylonghaul.bsky.social
Commemorative circular logo with small Long Covid Awareness ribbon inset on the left in black, grey & teal on a white background with black & white text reading Long Covid Awareness in concentric circles with a teal 5 representing 5 years of Long Covid.
March 16, 2025 at 12:05 AM
ladylonghaul.bsky.social
C + P with edits/corrections: Urge Congress to support this important bill to ensure Medicare/Medicaid beneficiaries and medical providers can continue benefiting from increased access and efficiency afforded by telehealth services.

Text SIGN PPNNLH to 50409 (@resist.bot).
Black and white text in bold letters on background of shades of mustard yellow. Top is gradient of brighter yellow mustard with black text. Bottom third is solid stone ground mustard with white text. Text reads Tell the U.S. Congress Support Permanence of Expanded Medicare Telehealth Coverage Text “Sign PPNNLH” to 50409 Support Permanence of Expanded Medicare Telehealth Coverage Resist Bot
December 20, 2024 at 9:57 PM
ladylonghaul.bsky.social
It might help to add the flyer referred to in the first post!

Designed by NZ friend @neoodist.bsky.social featuring photograph by Amy Humphries on @unsplash.bsky.social

Profile background features same photo, also designed by @neoodist.bsky.social
Last Chance for Alone Background image photograph of a copper-colored starfish on sand covered by shallow water giving the image a blue-green tinge. Small drawing of a light blue cup of steaming coffee to the left of last line of text which is a web address. Text in light blue reads Last Chance For Alone @LadyLonghaul aka Alone has delayed care for serious complex medical conditions for years while facing foreclosure & fighting off eviction. Can we make a miracle? Reply Repost Quote Follow Donate ko dash fi dot com slash LadyLonghaul
December 5, 2024 at 8:06 PM
ladylonghaul.bsky.social
Everything connects with words, design & photograph by NZ-based @neoodist.bsky.social
There is a close up photograph taken outdoors of a red camellia in full bloom surrounded by glossy dark green leaves across the center area of the graphic. Text in dark green is a mix of hand written style and sans serif font on a soft blossom pink background. A thinner pale leaf green text box spans the lower part of the image. Text above the red camellia reads: Everything connects. We need each other to thrive. Text below the flower reads: Care, Share & Give
November 24, 2024 at 5:22 PM
ladylonghaul.bsky.social
Poster created by @neoodist.bsky.social featuring photograph (cropped) by Amy Humphries via Unsplash
Background image photograph of a copper-colored starfish on sand covered by shallow water giving the image a blue-green tinge. Teal heart centered above the starfish in the lower right corner of image. Text in white script style font with copper accents reads Care, Share and Give.
November 21, 2024 at 8:25 PM