850+ days after getting COVID, I'm still trying to recapture all I've lost. Meanwhile, the White House just cut $11B in funding for the Long COVID research that could actually help people like me.
I got COVID and RSV at the same time - it didn't mess up my voice (I don't think?) but it did give me asthma and knock me down from "mildly active" to "stops halfway up the stairs."
Can I help you clean the storage archives from California? I’d love to participate and take some goodies off your hands, even though I still have a few original Sassy’s from when I was a kid!
Sure! And I'm glad you still have those! There's a lot to be done so I'm sure we can make a remote endeavor helpful also. Once everyone gathers (some rule breakers are emailing or DMing me rather than commenting here, which is not preferred but totally acceptable), I'll start a group thread for us all. Thank you, thank you and thank you!
Late to this thread, but I volunteer to help out from the Chicago area. I also have some original Sassys (and a bunch of original Jane magazines, too - those are in a chest in my old bedroom at my mom’s house.) Let me know. ; )
Thanks, Jane!! Also, just sent a pitch your way. Check your spam folder, because (IT HAPPENED TO ME:) My emails are deeply committed to going straight to spam.
As others have said, the last paragraph was brutal đŸ’” I feel for you, especially as the world seems to have forgotten Covid and it’s still with you.
You might already have a therapist but if not and you want a referral for those who works specifically with invisible chronic illnesses let me know.
I agree agree agree. See, sometimes we do agree, Corynne? I'm just kidding! We actually agree all the time, but I love that our fights are becoming famous on here.
Ha ha ha ha I am on a big disagreeing with everyone kick myself right now. You'll see some of it in the post for tomorrow that I just was drafting. Love you, honey!
I'm going to time it based on everyone's schedules (like I always do with our zooms and everything - my old Quaker schooling and need to reach consensus won't let me do it any other way). So it can be any time within this month or into June (with the exception of the June 6 weekend because that's a whole other story – a literal story that I will write here for you!). I would love to hear from others when their best timing would be. I am thinking a Saturday or Sunday makes sense. You all can let me know. If you are in or get yourself to the New York area, we can handle it from there and likely all meet up at my place. And thanks for asking!
I completely empathize! Lifelong asthmatic, cardiac arrest survivor, singer who developed a voice disorder during the pandemic…stole my voice until I found the speech therapist, voice coach -- it's such a process to regain the connection to our voice again. And it's deeply personal, I know that feeling so well. I lost my mom to Alzheimer’s too (Lewy Body) a few years back. She was also on a slew of prescription drugs and I always thought that had something to do with her early diagnosis. She was young, we lost her in a years time at age 56.
Just wanted to reach into your words and hug you. I just love your writing.
Such a small world!!!! Was it for our Rock-N-Roll for Respite Care show? The ALZ association here in Austin has been so wonderful, such an incredible organization! Oh, I’m so sorry about your dad đŸ’œ here if you ever need a chat luv!
My daughter also had long covid - which I hadn't even talked about here but your comment inspired me to. Are your symptoms ongoing? (Only answer if you feel like - and thanks for being here.)
Awesome and got it! Let's share our stories – I'll tell you mine first here and if you're up for it, I would love to hear yours. And I'll see you soon! Yay!!
Thanks for running this!!! I'm so grateful. Today is especially important since RFK Jr. is doing even more real-world damage. He wants all vaccines to be tested against placebos (they already test them before giving them to people)...even the ones we know are safe and effective. If it happens, it could mean we won't get another Covid booster until spring... which is insane and unethical with so many who are vulnerable and a new variant that is rising.
I had heard that about the testing versus placebos - and now knowing you (through the editing process anyway), all of this horrible news hits even harder. I'd like to keep this conversation alive and have you give updates whenever you are able. The awareness that you brought to this with this piece is important to continue to have out there - and was important for me to be better educated on also. Thank YOU for writing this.
Thanks. Yes the NIH, HHS, CDC, and Biden Administration were doing everything they could to get the focus and the funding for the Recover program. That's almost all gone now and people will continue to struggle and unfortunately develop Long Covid. One of the best places to follow along is The Sick Times https://thesicktimes.org. They track everything: private sector cures, remaining trials, and legislation.
Wendy, this is so awful. As someone who used to be a singer, I would be completely devastated.
The issues with your ears? Yeah, that’s one I can relate to…hard. I had a hysterectomy in December of 2023 (most likely a result of the COVID vaccine, but that’s a story for another time) which left me with tinnitus that resembles all of the crickets in Pennsylvania stridulating at different intervals.
(Why Pennsylvania? I grew up there, and my childhood memories are filled with that noise as the soundtrack.)
If I hadn’t already had low tinnitus from my years of performing in bars and clubs, it probably would’ve driven me further into madness by now.
Anyway, big hugs. I hope that you find your way to a full recovery, despite the abysmal status of our healthcare system.
I sympathize so much.
I got COVID and RSV at the same time - it didn't mess up my voice (I don't think?) but it did give me asthma and knock me down from "mildly active" to "stops halfway up the stairs."
Bummer and I'm sorry! How long ago was that? Meaning do you think this is a permanent state?
Feb. 2024. So we're 15 months in. There's a whole thing with insurance and medications that might fix it but who knows?!
At least it does finally check the final "TV Nerd" box for me. ;)
I am so sorry you got both. Hope you're mending okay.
Can I help you clean the storage archives from California? I’d love to participate and take some goodies off your hands, even though I still have a few original Sassy’s from when I was a kid!
Sure! And I'm glad you still have those! There's a lot to be done so I'm sure we can make a remote endeavor helpful also. Once everyone gathers (some rule breakers are emailing or DMing me rather than commenting here, which is not preferred but totally acceptable), I'll start a group thread for us all. Thank you, thank you and thank you!
PS You have a good name.
Late to this thread, but I volunteer to help out from the Chicago area. I also have some original Sassys (and a bunch of original Jane magazines, too - those are in a chest in my old bedroom at my mom’s house.) Let me know. ; )
Also, Ping Pong says hello.
Yes! And I'm thrilled to have you (and Ping Pong) on board!
Thanks, Jane!! Also, just sent a pitch your way. Check your spam folder, because (IT HAPPENED TO ME:) My emails are deeply committed to going straight to spam.
Nice, you have an original Sassy!
Fuuuuuck, what a kick in the teeth. And that last paragraph is brutal.
Thanks for reading.
As others have said, the last paragraph was brutal đŸ’” I feel for you, especially as the world seems to have forgotten Covid and it’s still with you.
You might already have a therapist but if not and you want a referral for those who works specifically with invisible chronic illnesses let me know.
That is so kind and supportive. And one of the reasons I love this space so much.
I agree agree agree. See, sometimes we do agree, Corynne? I'm just kidding! We actually agree all the time, but I love that our fights are becoming famous on here.
Ha!! Well, I agree with you more than I agree with almost anyone … aka why I have no friends đŸ¤£
Ha ha ha ha I am on a big disagreeing with everyone kick myself right now. You'll see some of it in the post for tomorrow that I just was drafting. Love you, honey!
This really moved me. Thank you so much.
Any idea when this cleanup gathering will be?
I'm going to time it based on everyone's schedules (like I always do with our zooms and everything - my old Quaker schooling and need to reach consensus won't let me do it any other way). So it can be any time within this month or into June (with the exception of the June 6 weekend because that's a whole other story – a literal story that I will write here for you!). I would love to hear from others when their best timing would be. I am thinking a Saturday or Sunday makes sense. You all can let me know. If you are in or get yourself to the New York area, we can handle it from there and likely all meet up at my place. And thanks for asking!
Making it in my calender.
Yes, Wendy! You are absolutely invited and it would be awesome to meet you in person.
I'll be there.
I’ll be in the city the week of May 26th, if that’s works out I would be excited to come for a few hours(?)
I completely empathize! Lifelong asthmatic, cardiac arrest survivor, singer who developed a voice disorder during the pandemic…stole my voice until I found the speech therapist, voice coach -- it's such a process to regain the connection to our voice again. And it's deeply personal, I know that feeling so well. I lost my mom to Alzheimer’s too (Lewy Body) a few years back. She was also on a slew of prescription drugs and I always thought that had something to do with her early diagnosis. She was young, we lost her in a years time at age 56.
Just wanted to reach into your words and hug you. I just love your writing.
What a tiny world. Paige, I think we connected over an event when I was working at the Alz Association (?!). My dad is going through dementia now…
…And on this thread as I got diagnosed last year with Long Covid—so much empathy for the author.
Such a small world!!!! Was it for our Rock-N-Roll for Respite Care show? The ALZ association here in Austin has been so wonderful, such an incredible organization! Oh, I’m so sorry about your dad đŸ’œ here if you ever need a chat luv!
My daughter also had long covid - which I hadn't even talked about here but your comment inspired me to. Are your symptoms ongoing? (Only answer if you feel like - and thanks for being here.)
Beautifully said. Thank you
Jane, you know I’m in!
The only day I can’t do is May 17 (it’s also a story).
Awesome and got it! Let's share our stories – I'll tell you mine first here and if you're up for it, I would love to hear yours. And I'll see you soon! Yay!!
Thanks for running this!!! I'm so grateful. Today is especially important since RFK Jr. is doing even more real-world damage. He wants all vaccines to be tested against placebos (they already test them before giving them to people)...even the ones we know are safe and effective. If it happens, it could mean we won't get another Covid booster until spring... which is insane and unethical with so many who are vulnerable and a new variant that is rising.
I had heard that about the testing versus placebos - and now knowing you (through the editing process anyway), all of this horrible news hits even harder. I'd like to keep this conversation alive and have you give updates whenever you are able. The awareness that you brought to this with this piece is important to continue to have out there - and was important for me to be better educated on also. Thank YOU for writing this.
Thanks. Yes the NIH, HHS, CDC, and Biden Administration were doing everything they could to get the focus and the funding for the Recover program. That's almost all gone now and people will continue to struggle and unfortunately develop Long Covid. One of the best places to follow along is The Sick Times https://thesicktimes.org. They track everything: private sector cures, remaining trials, and legislation.
Ah thank you for that resource!
Wendy, this is so awful. As someone who used to be a singer, I would be completely devastated.
The issues with your ears? Yeah, that’s one I can relate to…hard. I had a hysterectomy in December of 2023 (most likely a result of the COVID vaccine, but that’s a story for another time) which left me with tinnitus that resembles all of the crickets in Pennsylvania stridulating at different intervals.
(Why Pennsylvania? I grew up there, and my childhood memories are filled with that noise as the soundtrack.)
If I hadn’t already had low tinnitus from my years of performing in bars and clubs, it probably would’ve driven me further into madness by now.
Anyway, big hugs. I hope that you find your way to a full recovery, despite the abysmal status of our healthcare system.