Philly Philly representin’ this weekend! 👏👏👏International LC Awareness Day (March 15th) scrolling atop the @pecoconnect.bsky.social building! Check it out, if you are local.
“Living with invisible illness can be isolating. Physical symptoms are hard enough; the doubt and dismissal can be even harder. No one should have to battle their disease and the system meant to help them.
Women deserve better.”
Stop the Stigma of Chronic Illness
dynamically-disabled.printify.me
"Disease Unseen and Women Unheard…Until Now"
'HHS is aligning federal efforts on Lyme disease, long COVID...'
By Kristen Honey, Ph.D, is the HHS Chief Data Officer and LymeX Program Manager, and Assistant Secretary for Technology Policy (ASTP) at HHS
www.realclearhealth.com/articles/202...
So I have been using Claude Code pretty extensively for work and side projects for the last few months, and I’m pretty certain this tool won’t go away but equally certain the damage it will do to the tech industry is going to reach its maximum pretty soon.
Hamilton Spectator: Why do progressives and justice advocates seem to not care about COVID?
March is Long COVID Awareness Month & Sunday is Long COVID Awareness Day
'Events like Long COVID Awareness Month/Day help people know they are not alone..'
By Andrew Wilkin
www.thespec.com/opinion/cont...
@mayor.nyc.gov - if we look forward, every statistic points to Long Covid becoming more prevalent over time.
Acknowledging the pain and suffering of NYers with Long Covid now is a step in the right direction for visibility of this disease.
I think the time has come where I need to find a disability lawyer.
I keep loosing baseline and trying to work has become hard to impossible.
I’m scared and unsure and hate all of this.
Got my labs back and of course, they’re a hot mess express.
Especially my lipid panel.
Vitamin D is still low, even after a shot.
New one was NK were high.
RBC and platelets of course still high.
Being included is all that I want!
I’m so grateful my family sends me pics when they’re out in the world.
Skiing, shopping, performances, hair cuts- fill me in!
So grateful. 💜
#Covid #LongCovid #LongCovidAwarenessMonth #SocialJustice #progressive
Remember that you are more likely to become disabled than not.
You can be disabled by illness, injury, climate disasters, war, police brutality, unmitigated pandemics, lack of access to healthcare, etc.
Disability justice is for us all, and it’s foundational to all other forms of justice.
Jan. 2026, CBS News: "Trump policies at odds with emerging understanding of COVID's long-term harm"
"Researchers say more and broader support is important because much remains unknown about COVID and its impact on the body."
www.cbsnews.com/news/covid-l...
I often have to call and beg for telehealth appts.
The provider who gave me a hard no last time is at least giving it a bit more thought this time and I am 100% sure it’s bc when I called I sounded like hot garbage.
My voice was like an octave lower and creeky.
Ooo let us know how both go!
I have been thinking a lot about music lately.
Music used to make me feel so much.
I danced from ages 2-21 and then on and off for years.
My emotions are dulled in general and it gets worse the more I decline.
I wonder will music make me feel anything ever again?
#longcovid #mecfs
I’m bummed music causes me PEM, even in low doses, because all I want to do right now is watch The Music Man.
Real talk: Progressives have completely failed to adequately address the significant impacts of Long COVID, and this has left an opening for the far right to exploit vulnerable patients and deceitfully blame vaccines for all chronic illnesses.
March 2026, CDC: "Living With Long COVID"
'Long COVID is a serious illness that can result in chronic conditions, require comprehensive care, and can sometimes cause disability.'
www.cdc.gov/long-covid/l...
Here are two photos taken on the same spot a little over a year apart. Bishop Pass Trail at Long Lake, Inyo National Forest, California.
I have serious questions on what types of doctors will be listed. There are unfortunately grifters who take advantage of desperate people.
So easy!!
IV saline is everything.
Less nausea.
Less leg pain.
Less brain fog.
More bowel movements.
10/10, approve. ✅
My nemesis is the backyard squirrel who sits on the window ledge and stares at me in the house knowing I am powerless to stop him from sitting on my pretty potted flowers; smashing them and burying his peanuts everywhere in the soil. 🥜
He yells at me when I open the back door to shoo him away.
I can no longer get any water near my inner ear or it results in infxn or extreme pain.
I thought I had lost my ability to rest my head on the water in bath, which is great for a respite from neck pain.
Then today I used my lap swimming ear wax and it kept all the water out!
Small wins, yay!🎉
Trying not to get scammed, upsold or duped when trying to find help for long covid/mecfs is HARD.
Folks have identified there is a growing need here and are swooping in to try and make some cash.
So if scammers and actuaries can see the need why can’t everyone else?
I cannot believe how hot is has been recently. 🥵
I think this summer is gonna be a hot one.
As a sick person folks often talk to you about their sickness.
Which, if you are able bodied and generally healthy, I don’t want to hear about it.
Tell me about your joys or concerns, not sickness.
My body is sick all day long so it’s what I’m forced to think about. A reprieve is appreciated.
So my smell is pretty much gone, but also very messed up.
I get a lot of phantom smells that are very unpleasant.
I have one this morning and I have no idea what to describe it as except maybe sandalwood mixed with earth?
Which you think would be pleasant.
I've taken my last dose on the REVERSE Long Covid trial! I feel *so* much better than I did at baseline 6 mos ago. (Based on labs, was def on the baricitinib.) Really hope this gives others a boost and new treatment option!
Grateful for good science!!
