Had a cognitive/memory assessment done today w one of my neuro.
They are trying to access the extent of the damage from the strokes & subsequent brain damage & progression.
My memory loss is getting much worse. I forget everything.
Everything.
I have damage in frontal lobe, basal ganglia, progressive #encephalomalacia in right parietal lobe, volume loss, lesions throughout brain & brain stem, 4 inoperable 🧠 #aneurysms, mass around pineal gland & #chiari.
I spent yesterday & last night in the ER. I've been sick for 2 weeks with - RAT & PCR.
Though my Covid test was negative, they said I may have one of the new strains not showing up on tests. 6 diff docs who treated me last night said they'd seen lots of this happening recently.
Haven't left my home in weeks.
My partner was most likely asymptomatic & gave it to me after attending an outdoor event.
He masked & quarantined in another part of the house. It wasn't enough.
After virtual consult, was advised to hang up & dial 911 to be rushed to ER. My partner took me but was unable to stay with me.
I struggled navigating my manual WC due to L sided weakness. Even as a stroke patient w worsened ongoing symptoms, I had to wait 3 hrs for triage.
I'm begging you, please, listen to those of us who have #LongCovid from the 1st wave.
We're sharing experiences & medical traumas to try to help you understand how damaging long term affects of Covid are to help protect you from suffering the same fate. #TreatLongCovid
1/7
Sharing isn't easy.
Cognitive decline coupled w emotional impact of so much hate & denial we face takes a toll.
We keep shouting into the void hoping our voices will help others understand how absolutely necessary it is to protect yourself & others. #COVIDisAirborne
2/7
Many of us have multisystem degeneration & damage & have been disabled by Covid.
We've had to fight for our lives everyday while being dismissed by friends, family, & drs.
Our advocacy is based in our survival & much of hc now is based in what we've learned along the way.
3/7
Day 823 of my #longcovid battle
a thread.
This will mostly be rambling, screaming out into the void as I've felt even more disconnected as my health continues to deteriorate.
Took cpl hrs to get this out & is all over the place but that's ok too.
1/21
"mild" case of covid February 2020 led to LC rearing it's ugly head by June 2020. In 1styear, I went from being healthy & active to suffering 100+ symptoms.
Each dr visit & scan found further degeneration & damage. I was met w dismissal & gaslighting from med community.
2/21
I found great solace & help in the LC communities on social media. It gave me strength to keep advocating for healthcare & finding ways to self manage symptoms until I could find a dr to listen.
I firmly believe I wouldn't have survived w out y'all.
3/21