Willow Profile picture
May 14 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.
"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.
In 1st yr, scans found damage to my lungs, multilevel degeneration of my spine, gallstones, intestinal damage, & hernias. I had continued cardiac & oxygen deregulation issues, gi issues, cognitive decline & worsening mobility issues.
February 2021, I had a stroke causing damage to the right parietal lobe,frontal lobe, basal ganglia & scattered lesions throughout.
I lost use of the left side of my body, developed excruciating neuro pain & weakness, lost my ability to speak effectively.
Even then, docs still dismissed me & I had to get on wait lists for healthcare. Denied Medicaid & other programs.
I did pt on myself at home to learn to walk again. I sat at home talking to my cats for speech therapy. I was on my own. No friends or family offered help.
February 2022 finally accepted into local healthcare program.
Lucked out, 1st doc listened! He ordered tests, referrals & I finally had a team on my side to try to figure all of his out.
I had a glimmer of hope, something that was previously unattainable.
Each specialist I saw found new degenerative conditions not present prior to covid. Appointments were spaced months apart but at least i was starting the process!
Unfortunately, the waiting allowed me to worsen to a breaking point.
March brain MRI found volume loss, damage & lesions throughout. They were concerned I may still be at risk for another stroke but more in depth mri apts. weren't available until mid-June. There was no immediacy in my receiving care or pt for a stroke a yr ago.
Last month, I was admitted to the hospital with another stroke event. I was originally dismissed when I arrived at the er. I waited 13 hrs to be triaged.
Ct scan/mri found 3 brain aneurysms, additional lesions, pineal gland cyst & degeneration of cervical spine.
Docs now believe I have a connective tissue disorder, #VEDS or #MS,due to the severity & quickening of the degeneration.
Now, the game of is it #pots, #ME, #longcovid, #dysautonomia, #VEDS,#EDS, or #MS causing my issues?
My baseline has moved so far now.
Pacing is a different story with untreated aneurysms. Before, if I did too much, I would worry it may set me up for a flare that could mean I may be unable to leave my bed for days. It isn't that "simple" any more.
My neurologist got me apt. to get consult w neurovascular at months end. Until then, don't strain, lift, turn head quickly, do anything to increase hr or using one side of my body, don't go to high elevation, get overheated, or stressed.
Do absolutely nothing. Got it.
I'm scared to shower, walk to the end of my drive way assisted, use my wheelchair, sweep the floor, or any number of simple daily tasks.
Blowing my nose or using the bathroom are terrifying. Out of everything I've been thru, don't let me go out like this LOL.
I feel even more disconnected from friends & even from support groups. Dont get me wrong, I celebrate people getting better & love hearing their stories of triumph.
I'm just in a space where I'm so far past the level of degeneration others are i feel alone again.
I've not found much in way of support on twitter for others who have suffered #strokes or #aneurysms. The hashtags are used so damned much "jokingly" they are of little use.
Any suggestions for resources are welcomed.
I'm trying to stay grateful & push forward. I'm doing pt & st at home & seeing some progress. It's taken alot of work to get to a point of accepting my physical & mental decline & still have to remind myself #ItsOkayToNotBeOkay
Maybe, I won't get "better". I have to accept that. I have brain & neurological damage that may be permanent. I may not be able to regain some parts of what I have lost. That is a whole lot to digest.
Not giving up but realism is healthy.
Everyone shuts me down when I try to have these hard conversations. Why?
I get y'all are trying to help but stopping me & saying "U shouldn't talk like that" rather than offering support & listening is hurtful.
Keeping this bottled up so I don't upset others is hard.
Brain damage is weird.
Watching yourself decline cognitively at accelerating rate is terrifying. Aphasia & dysgraphia are abundant. "Brain fog" is nothing comparatively.
Auditory processing & reading comprehension make tv hard to watch. Music is all I have left.
I'm going to force myself outside into the garden again today to get the sun on my face & watch the birds & clouds float by.
I'm going to try to be grateful to be blessed w another day no matter how much pain it's brought me.
I'm going to keep trying.
My meds are almost out & I have 14 appointments over the next 2 months with specialists & no way to pay for them.

I am desperately trying to raise funds to continue my fight.

Please donate or share for visibility.


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