Willow Profile picture
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.

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.

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.

My brain's ravaged from #strokes & Covid.
I had pushed for this assessment because my doctors kept telling me that they didn't think I had that as much cognitive impairment as I thought because was able to still communicate with them effectively though slowed & w broken speech at times.
They were gaslighting me, saying it probably wasn't as bad as I perceived it to be.

Now that I have had a proper evaluation, they see that I have severe impairment & and agree that I'm seriously not ok.

I've been referred for a more in depth evaluation soon.
It's been 2 years since my 1st stroke that I have been complaining about cognitive decline & memory loss.

2 yrs that i have been trying to get help & dismissed.

Now, they tell me they recognize I need help & will listen.
Why weren't my 20+ brain scans showing damage enough proof?

Why did it take 2 years of fighting to get this assessment done to be listened to?

Why won't doctors listen to their patients??
I deserve a fucking apology from every doc that told me I was not as bad off as I thought I was.

Bet, I'm gonna go crazy old lady on some of them next time I see them.

I've fucking earned it.

Just blame it on the dementia.
Idk where to go from here.

I'm scared as hell to be honest.

I've already lost so much.

Memories slipping away, names, faces, important things ya know?

Things I reaaaally want to remember are gone.
I forget my grandchildrens names.
I forget how old my children are.
I forget how old I am.
I forget the simplest things &
the most important things.

I wish I could choose what I forget and keep the good stuff.

Thank you all for your kind words & messages.

It really warms my ❤️ to have such amazing support from all of you.

Ppl have asked what they can do to help.

If you are able, please donate or share for visibility.

Every little bit helps!


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More from @__Granuaile__

Nov 4, 2022
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.
Read 12 tweets
Jul 6, 2022
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.
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.
Read 8 tweets
May 14, 2022
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.
"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.
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.
Read 22 tweets

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