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
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'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. 🙏🏼