Charity FebDeath is, I guess, not much of a deterrent. If more people knew how #Covid becoming #LongCovid can break your #collagen machine, causing #OTC #occulttetheredcord (not visible on imaging, yay) or #CCI #craniocervicalinstability, whoah Nelly would folks be clamoring for the best #masks. #LongCovid #LongCovidKids
Also too, if folks knew how easy it is to find people in these circles here via #Covid #vaccine, #masking would become HELLA popular! But no ... this would hurt #BigPharma bottom line. So no ... we can't talk about that. #LongCovid #LongCovidKids
I would tell you what it's like when your spinal cord is too short for your body - what that does to you, the bizarre symptoms that come on the daily - but you wouldn't believe it. Only a handful of (increasingly slammed) doctors even begin to understand it. #tetheredcord #occulttetheredcord #LongCovid
A virus wreaking all hell of havoc in a body isn't new. See #UnrestMovie #unrest by #JenBrea. But the sheer (unnoticed, unreported, can you say #millionsmissing?) numbers that are coming out are cray cray. #LongCovid #ME #LongCovidKids
We have the fun fortune of having both #TBI and #LongCovid in my house - otherwise I might not have believed it - but the two can be remarkably similar. One of my daughter's earliest #TBI providers shared these wise words: "MCAS (mast cell activation syndrome) comes from three things: 1.) A virus; 2.) Chronic illness itself; and 3.) Traumatic brain injury." Now we have all three in my house. #LongCovid #LongCovidKids #MCAS #MastCellActivationSyndrome
Follow #ConcussionLegacyFoundation in Boston on any social media channel for two weeks. Count how many #suicides they're remembering. Connect those dots. #MCAS, #POTS, #OTC and more. That's what you're courting in #LongCovid. #TBI #CLF #FloMaskingForever
This thread was brought to you by last night's dream about #masking, in which I decide, against my better judgement, to stop. #nightmare
Zee@CharityFeb it has been more than a year since I signed up with the #ConcussionLegacyFoundation to donate my #brain for #CTE research
After registering, I was told by my contact to expect my #donor card in the mail.
After more than a year of #ghosted/ignored calls, voicemails, and attempts for resolution, the #VA (who was listed as being involved) can’t help and I am left wondering about the #credibility of this organization
⚠️I would think twice about helping this group⚠️
@zyz I am really sorry this was your experience with them. I mean, really sorry. I kinda get the feeling that if you're furthering the specific cause(s) they're targeting, you're in, but if not, you're ... not. You know? My experience with them has been less than stellar, *but* one can indeed get the gist of just how common suicide is after TBI by following them for a couple of weeks. They are very good for that.
@zyz I'm really glad you shared this, though. I signed up to be a volunteer support for #TBI caregivers. I've been waiting uncommonly long to actually be assigned anyone to help. I don't make a secret of the intersection of #TBI and #Spine issues, and the lack of knowledge, understanding and direction thereof. I've found it tends to piss off the #braininjury #donation - based community. Maybe they don't want to tax people's attention/comprehension bandwidth? I dunno.
@CharityFeb thank you.
I honestly don’t know what the need/traffic for support givers is, and I don’t know anyone who depends on them. That is only to say that I am relatively isolated from others who live with disabilities. So, in that regard I can offer only stupid looks. 🤪
I can’t comment on other organizations, either. My knowledge is limited.
But, I can say that your post inspired me to reach out to them again. I’ll update you if I ever hear back. ✌🏼😃👍🏼
@zyz Given my experience with my daughter's TBIs in 2019 and what I see on their Facebook support group, the need's pretty great. But hey. Let my post reassure you - if they still don't get back to you - that it's them, not you.
@CharityFeb thank you. I wish you and your family well
I’m not going to deny the donation. I’m just not confident with this department/management, not the members of the establishment as a whole. I’m hopeful. 👍🏼
@zyz Thank you. I'm sorry you're in the position to be making this donation.
@CharityFeb I’m not sorry- not if the end result is that it helps. 🙏🏼
@CharityFeb update on the #Brain Bank fiasco
Your inspiration helped!
After a simple back and forth of calls, I got an e-mail from them with my #donor card attached 😃👍🏼
@zyz Rad!!! I hope they do better, going forward. Good for you for trying again. :)