Bazia Zebrowski
@baziaz.bsky.social
LifeStolenByME 23yrs, ME, POTS, MCAS.
Masking to avoid being a eugenics stat.
Here to learn & advocate to find a cure.
I want to run, walk, work, build community, have a 2 way conversation. Live!
Masking to avoid being a eugenics stat.
Here to learn & advocate to find a cure.
I want to run, walk, work, build community, have a 2 way conversation. Live!
Valentine’s-chest pain, severe flu symptms & exhaustion.
Grueling day in #MyalgicEncephalomyelitis 23 yr journey.
Reason? Few extra steps 3.5 days ago.
Managing PENE(post exertional Neuro immune exacerbation) when it’s delayed +24hrs is impossible for accurate pacing.
HRV or HR aren’t accurate.
Grueling day in #MyalgicEncephalomyelitis 23 yr journey.
Reason? Few extra steps 3.5 days ago.
Managing PENE(post exertional Neuro immune exacerbation) when it’s delayed +24hrs is impossible for accurate pacing.
HRV or HR aren’t accurate.
February 15, 2024 at 1:48 PM
Valentine’s-chest pain, severe flu symptms & exhaustion.
Grueling day in #MyalgicEncephalomyelitis 23 yr journey.
Reason? Few extra steps 3.5 days ago.
Managing PENE(post exertional Neuro immune exacerbation) when it’s delayed +24hrs is impossible for accurate pacing.
HRV or HR aren’t accurate.
Grueling day in #MyalgicEncephalomyelitis 23 yr journey.
Reason? Few extra steps 3.5 days ago.
Managing PENE(post exertional Neuro immune exacerbation) when it’s delayed +24hrs is impossible for accurate pacing.
HRV or HR aren’t accurate.
Horizontal day.
Watching threads app shred to pieces.
Will we ever have a space that allows free speech, community wout censorship & with good tools to moderate trolls?
Watching threads app shred to pieces.
Will we ever have a space that allows free speech, community wout censorship & with good tools to moderate trolls?
February 10, 2024 at 7:09 PM
Horizontal day.
Watching threads app shred to pieces.
Will we ever have a space that allows free speech, community wout censorship & with good tools to moderate trolls?
Watching threads app shred to pieces.
Will we ever have a space that allows free speech, community wout censorship & with good tools to moderate trolls?
How ridiculous I’m to sick & cognitively challenged to share what living in ME hell is like.
Shout out to long time myalgic encephalomyelitis advocates
Anything you want to tell @thesicktimes.bsky.social about the CFS Advisory Committee?
Advocates worked hard only to experience
- recommendations ignored/blocked
- patients crash from giving testimony that was ignored
- members harassed..
Anything you want to tell @thesicktimes.bsky.social about the CFS Advisory Committee?
Advocates worked hard only to experience
- recommendations ignored/blocked
- patients crash from giving testimony that was ignored
- members harassed..
For @thesicktimes.bsky.social, I wrote about the new HHS advisory committee on #LongCovid opening nominations. The HHS announced the committee more than a year ago, showing a dire lack of urgency. Will they listen to the committee or will they tokenize them?
thesicktimes.org/2023/11/21/t...
thesicktimes.org/2023/11/21/t...
November 25, 2023 at 6:21 PM
How ridiculous I’m to sick & cognitively challenged to share what living in ME hell is like.
Advocacy idea:
Pay for ads to advertise medical research studies that are struggling to recruit.
I've just done this for a 35km radius around Boston in Massachusetts on Facebook for Michael VanElzakker's interesting study
#MEcfs #CFS #PwME #MyalgicE #LongCovid
Pay for ads to advertise medical research studies that are struggling to recruit.
I've just done this for a 35km radius around Boston in Massachusetts on Facebook for Michael VanElzakker's interesting study
#MEcfs #CFS #PwME #MyalgicE #LongCovid
October 29, 2023 at 1:49 PM
Loved the shadows playing about on our little porch flautist.
October 2, 2023 at 9:43 PM
Loved the shadows playing about on our little porch flautist.
So grateful for a unified nudge to gather here before Humpty Dumpty X takes the big fall.
I’ll be donating when I get some invites.
I’ll be donating when I get some invites.
I created this form to help distribute codes so the chronic illness community can congregate on Blue Sky. Please fill it out if you have codes to donate, and spread the link far and wide. forms.gle/LGVPYz8i3U8e... Let's protect our community from platform collapse!
September 30, 2023 at 1:47 PM
So grateful for a unified nudge to gather here before Humpty Dumpty X takes the big fall.
I’ll be donating when I get some invites.
I’ll be donating when I get some invites.
Always trying to find my reset.
My catapult out of horizontal world.
It would be poetic if green glasses released me back into my native habitat of hiking, kayaking & my feet honoring our green wild spaces that I desperately yearn for.
My catapult out of horizontal world.
It would be poetic if green glasses released me back into my native habitat of hiking, kayaking & my feet honoring our green wild spaces that I desperately yearn for.
September 28, 2023 at 2:24 PM
Always trying to find my reset.
My catapult out of horizontal world.
It would be poetic if green glasses released me back into my native habitat of hiking, kayaking & my feet honoring our green wild spaces that I desperately yearn for.
My catapult out of horizontal world.
It would be poetic if green glasses released me back into my native habitat of hiking, kayaking & my feet honoring our green wild spaces that I desperately yearn for.
#MyalgicEncephalomyelitis per #MEICC w #POTS, #MCAS, #Lyme,
I was always the person who was low maintenance.
Being fragile is sadly accurate & humbling.
Deconstructing my internal ableism.
#ToxicPositivity & inaccurate medical advice to continue to exercise, landed me in a severe condition.
I was always the person who was low maintenance.
Being fragile is sadly accurate & humbling.
Deconstructing my internal ableism.
#ToxicPositivity & inaccurate medical advice to continue to exercise, landed me in a severe condition.
September 28, 2023 at 1:21 PM
#MyalgicEncephalomyelitis per #MEICC w #POTS, #MCAS, #Lyme,
I was always the person who was low maintenance.
Being fragile is sadly accurate & humbling.
Deconstructing my internal ableism.
#ToxicPositivity & inaccurate medical advice to continue to exercise, landed me in a severe condition.
I was always the person who was low maintenance.
Being fragile is sadly accurate & humbling.
Deconstructing my internal ableism.
#ToxicPositivity & inaccurate medical advice to continue to exercise, landed me in a severe condition.
As if inflammation wasn’t rough enough bouncing around my body. My brain is particularly not fond of it. Fall slide is upon me.
September 28, 2023 at 12:53 PM
As if inflammation wasn’t rough enough bouncing around my body. My brain is particularly not fond of it. Fall slide is upon me.