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Long Covid Awareness Day D.C. March 15, 2024 - Join the Demonstration

Posted by janeaddams @janeaddams, Mar 4 11:16pm

FYI: A demonstration to Increase Long Covid Awareness is being held 3/15 in D.C., at the Lincoln Memorial from 10:30 AM to l PM. "We are a grassroots community that includes patients, allies and other COVID-cautious members..." Contact Eventbrite for more info. They suggest if you cannot join physically, you can email a video or story with your personal LC experience. This seems to be a good idea; I'd be there myself except... I have Long Covid so the trip would probably finish me off, but I will be emailing my story.

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

goldenbo | @goldenbo | Mar 8 6:59pm

Thank you, Jane! I checked it right out.

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dyork1979 | @dyork1979 | Mar 10 8:10pm

Hi! I came on here looking for support for LC awhile ago but am so excited because I am one of the organizers of LCDC. I have been sick since 2021. I heard the community on Twitter last year and thought we needed to bring more awareness because people still don't even know this is what is happening to them. So many people all over the world are dealing with job loss, partners leaving, families and friends leaving and now our governments have all abandoned us with little to no help. There are so many who have become homeless and so so many children. Reinfections have been the worst and bring on new symptoms. I hope this event can help. Please watch virtually on YouTube or Twitch. We are live streaming and have raised enough to do the professional live stream. All grassroots fundraising has been done and nothing has been wasted. We are all traveling on our own budgets. I am currently in a camp to stay socially distanced and am hoping my mask will protect me from another reinfection. I figured I keep getting worse. Had a stroke in January 3 weeks post reinfection. May as well fight while I have something left. All the info is on our web page. LCDCMarch15.com
Our email is lcdcmarch15@gmail.com
Again, thank you for talking about this event.

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shashig | @shashig | Mar 11 1:27pm
In reply to @mbryant1380 "@janeaddams is absolutely correct, it is not much better here in the U.S. I’m here in..." + (show)
@mbryant1380

@janeaddams is absolutely correct, it is not much better here in the U.S. I’m here in NYC and there are some LC Recovery Clinics and they do at least acknowledge that what I’m experiencing is real. My PC doctor doesn’t, his approach is to eliminate what it’s not before he MIGHT consider its LC.
I also for the first couple of years was going to multiple specialists and was told, it’s hormonal and/or anxiety. It was so frustrating and scary because I knew something was wrong! It wasn’t until a family member mentioned Covid, and to look into LC. So I did my own research through that I found this site and a couple of LC Clinics.
I went last December and the LC doctor said I did have Dysautonomia (POTS) “like” symptoms which he does believe was brought on by Covid. He said it has been a common disorder most people who had Covid are suffering from. He also said it being theorized that there could still be remnants of the virus still in some people causing symptoms, why?! They just don’t know yet.
So do I feel better symptoms wise, absolutely not, it did give some sort of comfort knowing I’m not imagining it all, a little.
It’s so many of us feeling lost, and left behind, it’s a struggle for me every single day! I grieve a life I no longer have.
I pray we all are healed, healthy and happy again!
Wishing all the best!

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Hi there...agree with you that, even here in NYC, where I also live, LC flies under the radar. My docs essentially blew off considering it as the cause of chronic symptoms since my second bout a year ago, including dizziness I never had before. Just made two appointments at the NYU Langone LC Clinic (neurology, rheumatology). They won't happen for a while, but what else is new? Have you had any experience there? Of all our hospitals, NYU is my top choice in every other way. Thanks! I join the collective prayers for good news and restored good health for us all.

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1 reply
mbryant1380 | @mbryant1380 | Mar 11 2:01pm
In reply to @shashig "Hi there...agree with you that, even here in NYC, where I also live, LC flies under..." + (show)
@shashig

Hi there...agree with you that, even here in NYC, where I also live, LC flies under the radar. My docs essentially blew off considering it as the cause of chronic symptoms since my second bout a year ago, including dizziness I never had before. Just made two appointments at the NYU Langone LC Clinic (neurology, rheumatology). They won't happen for a while, but what else is new? Have you had any experience there? Of all our hospitals, NYU is my top choice in every other way. Thanks! I join the collective prayers for good news and restored good health for us all.

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I am so sorry to hear you’re also subjected to feeling dismissed and unheard. I also have an appointment with NY Langone but that’s not until June. I was so desperate for some kind of help and answers, I was able to get an appointment with Montefiore LC Recovery in the Bronx in December. The doctor there I must admit was very kind and sympathetic towards my issues and concerns, and honest about unfortunately there isn’t a lot of knowledge right now on how to treat LC itself but to try and treat and manage the symptoms it’s causing. He also referred me to a support group for LC sufferers, which he actually joins once a month to answer questions and update us on any new information and trial studies. I’m still going to go to my appointment with NYU Langone in June.

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shashig | @shashig | Mar 11 8:40pm

Glad to hear you found a local resource...I too have an NYU June appt. and one in September!! I just ordered the late great herbalist Stephen Harrod Buhner's Lyme Protocol book...many sufferers swear by it. Interestingly, some researchers have noted a similarity between Lyme and LC paths, both post-viral. Will see what his recipe/formula is and if it's worth a shot.

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lorraine311 | @lorraine311 | Mar 12 4:08pm

My family and I will be there. I was too sick to go last year, but I promised myself if I could make it this year I would. Thankfully my family is supportive as I really couldn’t make it without them.

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law59 | @law59 | Mar 15 10:56am
In reply to @goldenbo "To me, the hardest part of LC is the lack of recognition from doctors that it..." + (show)
@goldenbo

To me, the hardest part of LC is the lack of recognition from doctors that it is real. I can understand it in the beginning. I got covid in March 2020 and the symptoms never went away although a few have improved. It really throws me that now, 4 years later, there are still doctors who say the symptoms are stress-related. This is after being diagnosed with POTS, orthostatic intolerance, PEM, ME/CFS, cognitive impairment as well as others. If my symptoms are all stress-related, those diagnoses (which were based on test results) are real or based on the doctor's stress? I have stopped grieving the life I used to have. I very much miss the brain I used to have. I am so thankful for my faith in Jesus Christ, and for my supportive husband. I am trying to focus on figuring out how to live a life that contains only about 4 hours of productive time a day. I think it's hard for doctors to be faced with such a pervasive illness that is all mystery at this point.

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Hi @goldenbo. As I am having trouble typing this, I so relate to your post and thankful your words describe to a tee what so many are going thru. Healing journeys to all🌈

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