Willow Profile picture
Autistic w SWS, hEDS, LC - navigating life w brain aneurysms & terminal dx. 1st Wave Covid survivor & stroke survivor. Posts focus on LC & my cats 🐈
Sep 5 11 tweets 3 min read
It's appalling to see so many "celebrated" for walking out of #BurningMan2023 rather than waiting it out & staying to do the right thing.

The majority of these people have left their things behind for someone else to clean up.
Most who walked out, took only what they could carry - leaving behind their entire campsites.

They don't have solid contingency plans to return & clean up their camps themselves.

I'd love to hear it if they do.
Aug 6 14 tweets 3 min read
I'm currently on day 8 of a Covid reinfection.

The 1st (day 3), I was in the hospital with a really scary situation from a complication of symptoms.

I'm so exhausted y'all.

Fever finally broke yesterday.

1/14 Image The only place I've been that I could have contracted Covid is the grocery store for about 10 minutes for cat food & bread last week.

2 ailes from the door, self check out. I could roll in/out with a quickness! No problem!
Damn it.

Jul 21 20 tweets 4 min read
#LongCovid is causing a complete loss of all of my teeth now.

Already had 11 extracted, they are proposing to take another 15 by summer's end.

My teeth are crumbling & nothing can be done to save them.

My dentist says they've seen alot of this in patients recently.

There have been many who have shared similar stories of extreme tooth loss like mine over the past 3+ years.

The American Dental Association reported an increase of 53% higher instances of cracked or broken teeth over the course of the pandemic.

Jun 9 26 tweets 5 min read
Covid has been gnawing at my brain since my first infection February 2020.

Over the past 41 months, I have watched helplessly as it ripped apart my brain in various ways leaving me a shell of my old self.


#LongCovidBrainDamage Brain damage has progressed rapidly since 1st scans early '21 w 1st lacunar infarct stroke.

From recent scans:

'cystic encephalomacia of superior R parietal lobe & redemonstrated dilated perivascular space in L basal ganglia'

Jun 7 25 tweets 5 min read
I was co-hosting a space yesterday where people were invited to speak openly about feelings & goings on in their lives.

I'm so grateful for spaces like these.
We desperately need more of this.
We have all been thru so much & continue to need support in so many ways ❤️
1/25 Spaces like these are a true life line for so many.

There are those who simply need a space to talk about feelings & thoughts dealing with chronic illness & how it effects their lives.

Many who are silent in other spaces find their voice in spaces like these :).
May 21 19 tweets 4 min read
This week, I went for 2nd neuro psyche eval at stroke clinic to dx extent of cognitive decline due to strokes & brain damage post Covid.

Drs notes just added to my chart -

"Major neurocognitive disorder with severe impairments."


I'm shook.

I'm 45 years old & have just been dx with dementia.

Idk what I was hoping for, maybe that they would tell me things weren't as bad as I thought.

I guess I had actually hoped for a little dismissal for a change.
May 20 6 tweets 2 min read
Did you know that #purrtherapy is legitimate medicinal vibration therapy?

Ragnar is an amazing Purr Therapist!

He knows his work is super important & takes great pride in his healing powers.

#RagnarCat Cats purrs vary between 25-140 hz.

Vibrations btwn 10-50 hz help increase the speed of healing of bones, muscles & tendons as well as decreasing inflammation throughout the body.

Vibrations of 18-35 hz helps increase joint mobility & decrease swelling of joints.
Mar 21 11 tweets 4 min read
I'm turning 45 this week.

I just learned I have cognitive impairment akin to early stage Dementia or Alzheimers usually seen in someone 30 - 40 years older than i am.

I'm loosing it y'all.

#LongCovidBrainDamage 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.

Nov 4, 2022 12 tweets 5 min read
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.
Jul 6, 2022 8 tweets 4 min read
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.
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.
May 14, 2022 22 tweets 7 min read
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.