Cap'n Mastodon · @nicedragon
629 followers · 1110 posts · Server neurodifferent.me

@bennessb Hi! I'm going to introduce myself before fog kicks in and then go back through this thread and meet some new people!

Various details in my bio, but here's the gist of what brings me to :

I have an autoimmune arthritis that acts like but eludes diagnosis.

I've also got... something... from a case of (that means I had COVID in February 2020 so can't technically prove it was COVID). So it's likely . I have halfhearted diagnoses of and from a doctor who said she can't tell the difference between the two. I don't currently have access to better health care, but I can say that my symptoms match up closely with .

So I'm interested in connecting with people with any of these conditions, or people who use to manage . Or basically anyone who understands what it's like to be and un- or under-diagnosed.

Also interested in connecting with people who are while . I have three small children, and we .

#NEISVoid #ra #hipstercovid #LongCOVID #CFS #fibromyalgia #MECFS #pacing #PEM #pene #pese #highrisk #parenting #ChronicallyIll #homeschool

Last updated 2 years ago

Eebl · @nicedragon
548 followers · 904 posts · Server neurodifferent.me

My condition isn't new, but understanding it's related is. I had (meaning I was an early adopter, prior to the start of testing), and I've been blaming my symptoms on another condition.

I have diagnoses of and from a doctor who says she doesn't know which it is and doesn't think it matters, but she does think it was triggered by whatever that virus was that I got at the end of February 2020.

I can't access better medical care, but I'm good at research and reading. I'm learning all I can, and the pieces are coming together. So I'm daring to put myself out there as part of the community, even though everything is still ill-defined and unprocessed.

*shrug* Only people who get it, get it, I guess.

#covid #hipstercovid #CFS #fibro #LongCOVID #MECFS #fibromyalgia #ME #NEISVoid #ChronicallyIll #ChronicIllness

Last updated 2 years ago

Eebl · @nicedragon
542 followers · 889 posts · Server neurodifferent.me

@ZeroCovidColin As much as possible. I'm disabled and dealing with the aftermath of , but in my own little way, I try. We're finding each other and trying to keep each other safe. And I'm not budging on that.

#hipstercovid

Last updated 2 years ago

Eebl · @nicedragon
521 followers · 804 posts · Server neurodifferent.me

Context: I have a complicated diagnostic situation, but it's likely that a case of triggered a chronic illness which looks a lot like . I've only recently pieced together the timeline and realized that my current issues were likely triggered by a virus almost three years ago.

So: I told my sister, with whom I've shared all the worst-case scenarios, the I wasn't ready to mention the connection to my small children yet, because I need to process it and get some medical questions answered first.

Her response: "But wouldn't it be reassuring to them to know that you had it and got better?"

Reassuring? Got better?

How are there two different worlds right now, the world where and the world where everyone has just decided it's not a thing?

@novid

#hipstercovid #MECFS #covid #CovidIsNotOver #LongCOVID

Last updated 2 years ago

Eebl · @nicedragon
521 followers · 795 posts · Server neurodifferent.me

is when you had a virus that was probably back before everybody knew to test for it, so you can never prove that you were an early adopter.

#hipstercovid #covid #LongCOVID

Last updated 2 years ago