@sueponcin.com
After Jan 2021: #Disabled by Long COVID & #BookSky author #LongCOVID memoir Before Jan 2021: overachiever, #MathSky Calculus teacher, Mom Uber driver www.sueponcin.com In The Space Between: https://a.co/d/0fkSZMd
Illinois State Senate to vote on bill allowing protective medical equipment on March 3rd.
Glad government is taking steps to allow us to protect ourselves
And
Baffled this is even necessary.
One infection = 5 years disabled
legiscan.com/IL/bill/SB33... PROTECTIVE MEDICAL EQUIPMENT
Anyone with a chronic illness who is dynamically disabled knows how hard it is to be “on”.
Congratulations Christina Applegate! You did it!
youtu.be/PnSGLTcSyDc?...
I participated in the Reverse-LC trial and highly recommend enrolling if you suffer from Long Covid and live in one of the cities enrollment has expanded to!
As of mid-Dec. 2025, less than 150 people had fully enrolled so there is plenty of space.
news.vumc.org/2026/02/06/v...
When does Long Covid become Forever Covid?
Because I think I’m there.
I saw this post on Facebook and the volume of negative and derogatory comments still continues to surprise me.
Beyond the risk of becoming disabled by one infection (hi, that’s me), why would you risk getting sick and miss what you’ve worked towards for four years?
Anyone with a dynamic disability or chronic illness can identify with Aliyah Rahman’s unpredictable body. The nightmare of being taken into custody unjustly compounded by being told you should walk because “your legs work to drive”
Thank you for sharing your story!
youtube.com/watch?v=zrcW...
Long Covid friends—
A bill in the Maryland legislature would create an R&D fund for LC—a big deal when new federal funding is stalled.
The advocate behind the bill is asking for people anywhere to submit written testimony on Fri 2/6 on your experience w/LC, to say why this is needed!
More info:
Today @thesicktimes.org: RECOVER-TLC is launching the biggest Long COVID pediatric trial so far. @spichaksimon.bsky.social examines that trial, and two other pediatric trials in progress. thesicktimes.org/2026/02/03/l...
Sharing images and videos of our Long Covid experiences help make our world a reality for others and spreads awareness.
Some of my favorites:
A gorgeous essay putting into words how so many of us with Long Covid feel being embraced by the ME/CFS community that has been lifting each other up for years.
centerleftstack.substack.com/p/those-who-...
Writing the chapter about my daughters had me sobbing. They’ve gone through so much since I got sick. Their chapter’s title is “You Can’t Always Get What You Want” by Rolling Stones covered by Widespread Panic.
Putting a human face to the unknown was one of the driving forces behind sharing my story. Long Covid is very real, it can happen to anyone and it can destroy your life.
a.co/d/3ffYy6E
Cover art and a few pages of Long COVID Transformed My Mommy and Long COVID Transformed My Sister into a Turtle. Includes illustrations of a green turtle with headphones and sunglasses, A rainbow striped scared Zebra and the eyes of a lion, two brown-skinned, brown-haired kids playing a game of memory, a rainbow unicorn.
New children’s books about living with Long COVID are here!
Long COVID Transformed My Mommy
Long COVID Transformed My Sister into a Turtle
Written by a mom living with disabling Long COVID.
Order at: www.dottieloni.com
Share these books to help families be seen & understood. #LongCOVID, #MECFS
One infection = 5 years disabled
This is a majority group I wish I could be excluded from.
My brother did too.
For all the dynamically disabled people out there…….
youtube.com/watch?v=cG2u...
Screenshot of the interest form listing enrollment sites.
Two purple pills from the trial in my hand.
Reverse-LC clinical trial for Long Covid is expanding to more enrollment sites!
Per the interest form, you have 17 options, up from the original 5. Great news for those not well enough to travel.
redcap.vumc.org/surveys/?s=3...
One infection = 5 yrs of brain damage
Being dynamically disabled by Long Covid looks like……
when u fell like you're dying, find 2 friends who also feel like they're dying and form a die-angle mybodyistryingtokillme.com
“Nearly 2% of the adult workforce in the U.S. is unable to work because of ME/CFS or long COVID, costing the economy between $30-50 billion annually in lost productivity and health care costs.”
🙋♀️
Me. Right here. Lost productivity.
And no, I had no prior history.
And no, I can’t try harder.
Not a fun party conversation but…
Long Covid f-ed up my brain and maybe it can be used for good.
“Data shows neurologic disorders cause more death, sickness, and disability than any other kind of illness or disease. The need for brain donation hasn’t been clearer, more urgent, or dire.”
The 1968 flu pandemic occurred between 1968 and 1970 and killed up to 4 million people globally.
It is among the deadliest pandemics in history. Apparently, we didn't learn much because viral pandemics keep happening again and again and again...
#Airborne #Cleantheair
My book - In the Space Between: finding rays of hope through long covid The title is written at the top of picture my brother in law took in his backyard of a double rainbow in the Sonoran desert.
Front of a royal blue tee with a baseball-ish type logo Dynamically Disabled in all caps A tail off the last letter with the chronic condition - this version is “ME/CFS”
The back of each Dynamically Disabled tee Stop the Stigma of Chromic Illness “They” need to try harder “They” are faking “They” want a handout “They” is “ME”
In honor of my five year Long Covid anniversary, please help spread awareness by sharing my story far and wide. Too many people still don’t know about Long Covid and dynamic disabilities.
Book: a.co/d/5Gr1mGS
Blog: www.sueponcin.com
T-shirt: dynamically-disabled.printify.me
Today we’re launching #ForThoseWhoCant, our new fundraising campaign.
It’s about making fundraising more accessible, with ideas and guidance for friends, family, and loved ones who want to support our work.
Email fundraise@longcovid.org or click here for more: www.longcovid.org/get-involved...
Loop ear plugs help my noise sensitivity. I go to cheer and gymnastics competitions for my girls and they are a lifesaver. I used noise canceling air pods too but prefer Loops.
I’ve also done Neurofeedback which diminished my level of sensitivity. It’s not gone but it’s better.
I wrote about it:
Soooooo happy for her 🌈🌈🌈
Soooo happy for you and for the future long covid patients it may help!
Please read my story. I’d be happy to send you a free copy if you would like. Or check out my blog posts.
I know it’s extremely hard to understand Long Covid if it hasn’t happened to you or someone you’re close with. Each of us here are trying to educate and spread awareness.
a.co/d/anDFZ8n
Covid brought out my celiac and it was 1.5 years later I was finally tested for it.
My psyche feels like it’s gone rounds with Mike Tyson because of uneven recovery and setbacks.
Cue Chumbawamba singing
“I get knocked down”
My Long Covid dynamic disablity stop me from joining:
“He drinks a whiskey drink
He drinks a Vodka drink
He drinks a Lager drink
He drinks a cider drink”
