I follow you regularly and for the most part, greatly appreciate your stuff. But may I ask what you mean by “The COVID Crew“ with the 🤮 next to it? As someone who has been suffering from long Covid and it’s devastating ramifications for almost 3 years, and who has lost her health and employment as a result, I’m not sure what you mean. F…
I follow you regularly and for the most part, greatly appreciate your stuff. But may I ask what you mean by “The COVID Crew“ with the 🤮 next to it? As someone who has been suffering from long Covid and it’s devastating ramifications for almost 3 years, and who has lost her health and employment as a result, I’m not sure what you mean. For millions of people, long Covid is a devastating consequence of the Covid virus, and we are dealing with a medical system that has little concern, minimal WELL-DESIGNED research, no confirmed biomarkers (despite all the “research”), and no treatments. And for the most part, we are being ignored. Your headline doesn’t seem to match the actual content of the newsletter where you mention COVID, but frankly, there’s mixed messaging that takes a potential hit (again, unclear) on those of us who have been hit so hard by COVID.
Hi Terri. I certainly understood the actual text in the newsletter of course, but thought the headline (so to speak) was distasteful (not in a good way) and misleading. That having been said, I appreciate your comments (as did Sam Youngman I see)!
Thank you. And sorry to hear about your friend. I’m glad you’re there for him or her, because many people with Long Covid also deal with a degree of abandonment by friends and family. 🙏🙏🙏
She finished her P.A. degree at Duke through grit and perseverance! Duke worked with her, too, but she met every requirement. Was in a wheelchair and still uses a cane.
Wow, that’s quite remarkable. And I wish her continued grit as she builds a meaningful life despite the enormous challenges. I attended an online seminar recently with a very renowned physician who has struggled with ME for about 40 years. Very inspirational.
What they are saying is that we are girding our loins for a big covid comeback, even though there are still 200 people a day diagnosed in this country alone. But now no vaccines for anyone under 65.
Everyone seems to think they can just will it away. As a cancer patient it annoys and frightens me how lax we have become about masking, even healthcare facilities!
Hi Judy. Well, not a good club to be in. How are you doing? At the 7-month point, I had had two hospitalizations, but was still in denial — every time I felt a bit better, I’d try to get back to my “normal” functioning. Always led to bad crashes. I’m almost 3 years in at this point. Dealing with many secondary issues as a result of Long Covid. Still learning how to manage the challenges. Hope you have some solid support, both medical and personal.
Understand the feeling a bit better and then the crashes. Went 9 days once and thought I was healed and then right back to where I was. Just have to keep pushing on and not let it define me. There are so many people that are so much worse off. I am thankful that mine is mostly breathing and coughing and fatigue. I can live with that. Just pace myself and rest if I need to. Most people think that we are faking it. They don't understand, since you look normal. My doctor thinks that it is here to stay. I'm trying to prove her wrong! Haven't succeeded yet. I hope you have a lot of improvement in the coming months. Stay strong, get lots of rest, do what you can when you can. Doesn't long covid feel a lot like this regime? Wish we could wipe both of them out. Take care and God Bless.
I know what you mean. You know, honestly, we don’t know what the ultimate evolution will be in our bodies, but because of Long Covid’s similarities to ME–CFS, it’s certainly possible that it will be a lifelong, chronic condition. In my own case, LC led to autonomic dysfunction, specifically POTS, as well as a reactivation of EBV which morphed into ME. I’ve gone through various kinds of testing that has revealed many physiological abnormalities at this point. So do I think I’ll recover from all of those issues? Probably not. The real challenge for me is to continue learning how to live with LC in a realistic and meaningful way. I’ve decided (& this is just me) that it’s OK for LC to define me in some ways because it certainly dictates so many aspects of my life. However, it doesn’t have to define me in a way that lead to negativity or futility. I’m not a religious person, but I do think that adversity can lead to enhanced spiritual vitality. I have always been very athletic, particularly engaging in long distance outdoor athletics, so in that respect, the adjustments that I need to make have been enormous and challenging,. But I continue to work on it! Best of luck to you as well as you continue with this journey. And you’re right, there are so many things in life that are so much worse. It’s good to keep things in perspective.
Just hang in there. Maybe someday there will be a cure, but I doubt that because of all the cuts. Since I am 83 that cure would never be in my lifetime, but, hopefully, down the road, when the monster is gone and progression starts up again, we will have answers. Just do what you can, do not hold on to what you can't do. Find other ways to be satisfied with what you can do. We are so lucky. We are here and so many didn't survive this disease. God Bless.
Good advice Judy. You sound like a very sage and resilient 83! I’m 68 and lucky enough to have had a full life. If I were 20 or 30 and hit hard by Long Covid, then I’m not sure if my path to acceptance would be the same. The challenges would certainly have different dimensions. But ultimately, you’re right about not holding on to what one can’t do. Agree with you about the political situation of course. Monstrous, soulless, heartless. The path to saving ourselves is unclear, given the 77 million who decided they were fine with insurrection, sexual assault, racism, 34 felony convictions, extreme ignorance, bullying, etc. However! They still aren’t a majority, so the fight for justice and democracy continues. And Substack has been a great venue for interacting, organizing, learning, etc! All the best to you!!
I follow you regularly and for the most part, greatly appreciate your stuff. But may I ask what you mean by “The COVID Crew“ with the 🤮 next to it? As someone who has been suffering from long Covid and it’s devastating ramifications for almost 3 years, and who has lost her health and employment as a result, I’m not sure what you mean. For millions of people, long Covid is a devastating consequence of the Covid virus, and we are dealing with a medical system that has little concern, minimal WELL-DESIGNED research, no confirmed biomarkers (despite all the “research”), and no treatments. And for the most part, we are being ignored. Your headline doesn’t seem to match the actual content of the newsletter where you mention COVID, but frankly, there’s mixed messaging that takes a potential hit (again, unclear) on those of us who have been hit so hard by COVID.
They mean RFK and his cronies are withdrawing support for vaccines for everyone except folx over 65.
Hi Terri. I certainly understood the actual text in the newsletter of course, but thought the headline (so to speak) was distasteful (not in a good way) and misleading. That having been said, I appreciate your comments (as did Sam Youngman I see)!
Long COVID is DEVASTATING! Have watched a young friend struggle since October 2020. 🙏🙏🙏🙏
Thank you. And sorry to hear about your friend. I’m glad you’re there for him or her, because many people with Long Covid also deal with a degree of abandonment by friends and family. 🙏🙏🙏
She finished her P.A. degree at Duke through grit and perseverance! Duke worked with her, too, but she met every requirement. Was in a wheelchair and still uses a cane.
Wow, that’s quite remarkable. And I wish her continued grit as she builds a meaningful life despite the enormous challenges. I attended an online seminar recently with a very renowned physician who has struggled with ME for about 40 years. Very inspirational.
I have a friend who has also been dealing with it since 2020. Had all these retirement plans to travel; quashed.
I totally understand. I’m more or less of that age as well. Had to “retire” prematurely, etc. Wishing you and your friend all the best!
What they are saying is that we are girding our loins for a big covid comeback, even though there are still 200 people a day diagnosed in this country alone. But now no vaccines for anyone under 65.
Everyone seems to think they can just will it away. As a cancer patient it annoys and frightens me how lax we have become about masking, even healthcare facilities!
Oh! So sorry to hear that you’re a cancer patient. Very difficult. And you’re right about medical facilities.
I know! I continue to mask.
I, too, have long covid. Only 7 months so far but seems like forever. It's not fun and no cure.
Hi Judy. Well, not a good club to be in. How are you doing? At the 7-month point, I had had two hospitalizations, but was still in denial — every time I felt a bit better, I’d try to get back to my “normal” functioning. Always led to bad crashes. I’m almost 3 years in at this point. Dealing with many secondary issues as a result of Long Covid. Still learning how to manage the challenges. Hope you have some solid support, both medical and personal.
Understand the feeling a bit better and then the crashes. Went 9 days once and thought I was healed and then right back to where I was. Just have to keep pushing on and not let it define me. There are so many people that are so much worse off. I am thankful that mine is mostly breathing and coughing and fatigue. I can live with that. Just pace myself and rest if I need to. Most people think that we are faking it. They don't understand, since you look normal. My doctor thinks that it is here to stay. I'm trying to prove her wrong! Haven't succeeded yet. I hope you have a lot of improvement in the coming months. Stay strong, get lots of rest, do what you can when you can. Doesn't long covid feel a lot like this regime? Wish we could wipe both of them out. Take care and God Bless.
I know what you mean. You know, honestly, we don’t know what the ultimate evolution will be in our bodies, but because of Long Covid’s similarities to ME–CFS, it’s certainly possible that it will be a lifelong, chronic condition. In my own case, LC led to autonomic dysfunction, specifically POTS, as well as a reactivation of EBV which morphed into ME. I’ve gone through various kinds of testing that has revealed many physiological abnormalities at this point. So do I think I’ll recover from all of those issues? Probably not. The real challenge for me is to continue learning how to live with LC in a realistic and meaningful way. I’ve decided (& this is just me) that it’s OK for LC to define me in some ways because it certainly dictates so many aspects of my life. However, it doesn’t have to define me in a way that lead to negativity or futility. I’m not a religious person, but I do think that adversity can lead to enhanced spiritual vitality. I have always been very athletic, particularly engaging in long distance outdoor athletics, so in that respect, the adjustments that I need to make have been enormous and challenging,. But I continue to work on it! Best of luck to you as well as you continue with this journey. And you’re right, there are so many things in life that are so much worse. It’s good to keep things in perspective.
Just hang in there. Maybe someday there will be a cure, but I doubt that because of all the cuts. Since I am 83 that cure would never be in my lifetime, but, hopefully, down the road, when the monster is gone and progression starts up again, we will have answers. Just do what you can, do not hold on to what you can't do. Find other ways to be satisfied with what you can do. We are so lucky. We are here and so many didn't survive this disease. God Bless.
Good advice Judy. You sound like a very sage and resilient 83! I’m 68 and lucky enough to have had a full life. If I were 20 or 30 and hit hard by Long Covid, then I’m not sure if my path to acceptance would be the same. The challenges would certainly have different dimensions. But ultimately, you’re right about not holding on to what one can’t do. Agree with you about the political situation of course. Monstrous, soulless, heartless. The path to saving ourselves is unclear, given the 77 million who decided they were fine with insurrection, sexual assault, racism, 34 felony convictions, extreme ignorance, bullying, etc. However! They still aren’t a majority, so the fight for justice and democracy continues. And Substack has been a great venue for interacting, organizing, learning, etc! All the best to you!!