Thanks for the hat tip to NYC Retina. My daughter has moved to the Hudson Valley and gets her care for a potentially blinding chronic retinal condition in NJ, but I’ve filed this info away in case she ever needs emergency care. Scary stuff. Hope he continues to improve.
Thanks Sue. I’m sorry to hear about your daughter’s eye condition - that’s so scary! We live in the Hudson Valley too. The first surgeon my husband saw was in Mount Kisco (he has an office in White Plains too). His name is Dr. Craig Fern. He’s not with NYC Retina, but he could be a good contact for your daughter to also hold onto for non-emergencies.
Geez, Amy! Scary crap for you and Baldy, compounded with the stress of driving around Manhattan in the dark ugghh - BIG hugs.
Thanks for highlighting the symptoms and what to do. My Dad had a retinal detachment back in the late 70s, apparently caused by something happening in a squash game. He had his operation in London - in case anyone in the UK needs this: https://www.moorfields.nhs.uk/eye-conditions/retinal-detachment 'For over 200 years Moorfields Eye Hospital has been a teaching hospital dedicated to ‘curing diseases of the eye’. We are the oldest and one of the largest centres of ophthalmic treatment, teaching and research in the world. We are a world leader in higher surgical training to ophthalmologists. We are a place where medical students from top London universities come to learn, and nurses receive comprehensive training for both pre- and post-registration.'
P.S Since January there's been around 200 weird profiles I've muted or reported/banned. A few subscribe and try to initiate chats..I've spent a significant chunk of time checking profiles.
Thanks for the support, Victoria, and for the UK referral! I may boost it in my next post just so UK folks see it.
Ugh, the weird profiles. I check out almost every one too. Sometimes I’m not entirely sure if it’s a fraud or legit, so I leave it and monitor. But maybe I’ll start muting or reporting/banning. Is there an easy way to report?
I literally check every subscriber, I go through likes, activity -I used to monitor more but now I report/ban a LOT more easily.
Heads up some of the lovely valued members of my community to recommend Carer Mentor, unintentionally streamed a LOT of these profiles after their notes went viral, and I asked them to remove their recommendation for now. We're mutually recommending in other ways but the 'new subscriber' auto-recommends can feed a wave...does that make sense? I've other thoughts but suffice to say, I monitor less and outright ban more to protect my publication space/those I recommend. Report-ban is simple from the 3 dots on the profile when you click through from the subscriber list - is that what you mean?
You are so right - me and another Substack writer here seem to “share” trolls, and it comes off of recommendations. Then i did some recon and noticed there were four specific newsletters that were in common among these bot-men, including mine and hers. So frustrating!
And yes, thank you for the three dots tip - that is what I meant.
I 'just' DM folks - often they're unaware whats happening... Things will slow down come end of March, they are already - did you notice the change in the dashboard and profile formats? The notes push is slowing. I recommend DMg to help each other avoid weird profiles. Feel free to check with me.
Also, I don't 'follow' folks as freely as I did...
Oh, Amy – what a difficult and worrying time it's been. Sending lots of well-wishes to you both.
PS If I were compiling an anthology of brilliant words about horrible illness, "We of the first variant. Pioneers in uncharted waters of decrepitude and lasting organ damage" would be the very first entry!!
Wishing baldy one hell of a recovery. So sorry to read all this. The insurance thing is madness.
For all the anger I feel at my own experience with the nhs in the uk, i am also incredibly grateful for what we have here. We don’t know we are born in this country sometimes. We have more support than we realise.
I think each system has its pros and cons. My therapist is Canadian and we compare notes on socialized medicine vs. the for profit system here. She can’t get her doc to order most of the tests that I can, so that’s one key difference. But then you do hit a wall sometimes where insurance just won’t pay.
Thanks for your kind words about Baldy. Unfortunately we just found out the surgery didn’t take and he needs another one. I’ll be updating in my next post.
Amy! I am SO sorry about Baldy. My God. You know our healthcare in this country infuriates me AND I am so glad you had space on your card to get him taken care of ASAP. I found out about retinal detachments a couple of years ago and was horrified that it was even a thing. Please let us know how his recovery is going over the coming months. I'm glad you two have each other to get through these violent life bends.
My Tonic family you have certainly been through it these last few weeks! I have a recurring nightmare my teeth are falling out but it’s a holiday and the dentist is charging me double to have it fixed. Why do we live like this?? I know why but wow do we need to fight for better. I will never understand why our healthcare and insurance systems are for profit. What a scam. I’m glad Baldys vision is coming back and Zira has her moments of peace and I hope you are taking care of yourself as well. You are not alone in spirit 🖤
Glad your husband is ok. What a nightmare that sounds like. As a proofreader and editor (and an extremely near sighted person) the idea of retinal detachment keeps me up at night sometimes. I’m thankful I had an ophthalmologist a long time ago who told me about it and told me if I ever had “curtains” to go right to the ER. I have floaters regularly too so it’s hard to differentiate what’s normal or not. Had a few scares there. It’s a great thing to educate people on for sure (and had no idea it could be a side effect of long COVID!).
Amy, really glad that your husband got the care he needed in time.
I have had retinal issues and you don't mess around with them.
My retina issues are due to occasional high spikes in PB (so far, no surgery needed) but after originally getting it under control I had a recurrence 10 years later - and yes, floaters and some crazy flashing lights.
No caffeine for me, pretty much ever.
The thought of losing your sight is very sobering. Best wishes to you both!
Sorry that. PB is usually a sandwich but this time it's a typo. Should have been BP. Also, fortunately my detachments haven't been accompanied by a tear. That sounds especially scary. That tissue can deform quite a bit without tearing.
Oh no, this is so scary! Eye things are no joke. I’ve been at high risk for retinal detachment because of being severely nearsighted since I was 7, and since the Long COVID diagnosis, it’s been an extra concern. After my reinfection I had a period of seeing lights in my peripheral vision, usually at night. It was nerve wracking but went away after several months, and seemed to be neurological according to my eye doctor. I really hope your husband heals up and the recovery is smooth sailing!
Also, thanks for the mention! I have another post coming soon!
Well, he’s been a great doc for over 20 years, and is open to learning about LC from me, but hasn’t seemed to know about all the risks for eye health post-COVID, no.
Oh. And I don't care if it's illegal or not: If you drive around with your disabled placard hanging off your window, you are editing entire bicyclists, motorcycles, kids, dogs, and small cars out of your field of vision.
This is a great way to create more disabled people, but they won't want to be friends with you. (If they survive.)
A good doctor who understands our disease set will approve disabled license plates so you don't have to think about placards anymore.
Yeeeee, did not know that retinal detachment could be on the bingo card! AND insurance denied you; I'm fuming. I hope you can fight that, given the circumstances. I've found they sometimes cave if you use their inane fax machine. And then call them to point out you did, because it's ONE FAX MACHINE FOR ALL OF BLUE CROSS BLUE SHIELD good lord I need a bigger font here to scream.
With how broad the diagnoses are, I do wonder if the Venn diagram for Long Covid and "mystery mostly-lady illness" is really a circle with fuzzy edges. Most MEeps have comorbidities far beyond ME/CFS, and for me, it's not even my worst symptom. I've got the organ damage et al, pre-pandy. It does seem like with enough insults (mine were viruses and e coli) the body tends to kinda do...the alien stuff our bodies are doing.
Yes to less screen time. Help. All the little song snippets from TikTok-via-Instagram have infiltrated my brain and I need it to stop.
Haha, those mysterious and archaic fax machines strike again 😂. There’s no fighting this, because there was no denial. No insurance companies at all pay for this yet. Believe me, it was the first question I asked.
I realized upon rereading my post that I made it sound like “no one before us ever had alien symptoms.” I’m sorry, I’ll go back and change the wording (when I get out from under the 15yo feline boss of the house 😼). I more meant in comparison to other long haulers of later variants. But I know our ME/CFS forepeople are the ones who really paved the way with WTF symptomology!
Well, it FELT like you were the first, because these diseases weren't wide spread or even medically studied much before! And a lot of us ME/CFSers hadn't made that much progress by pandy-time. Leave it if it resonates. The exact truth is sometimes at odds with brevity and punch in writing, I've found.
NO INSURANCE COMPANIES PAY FOR YOUR RETINAS TO NOT FALL OFF. Great. Wow. That makes total and complete sense. (Screams into a towel on your behalf.)
What a frightening ordeal. Hoping all is well, x.
Thanks, Rachel!
Thanks for the hat tip to NYC Retina. My daughter has moved to the Hudson Valley and gets her care for a potentially blinding chronic retinal condition in NJ, but I’ve filed this info away in case she ever needs emergency care. Scary stuff. Hope he continues to improve.
Thanks Sue. I’m sorry to hear about your daughter’s eye condition - that’s so scary! We live in the Hudson Valley too. The first surgeon my husband saw was in Mount Kisco (he has an office in White Plains too). His name is Dr. Craig Fern. He’s not with NYC Retina, but he could be a good contact for your daughter to also hold onto for non-emergencies.
Geez, Amy! Scary crap for you and Baldy, compounded with the stress of driving around Manhattan in the dark ugghh - BIG hugs.
Thanks for highlighting the symptoms and what to do. My Dad had a retinal detachment back in the late 70s, apparently caused by something happening in a squash game. He had his operation in London - in case anyone in the UK needs this: https://www.moorfields.nhs.uk/eye-conditions/retinal-detachment 'For over 200 years Moorfields Eye Hospital has been a teaching hospital dedicated to ‘curing diseases of the eye’. We are the oldest and one of the largest centres of ophthalmic treatment, teaching and research in the world. We are a world leader in higher surgical training to ophthalmologists. We are a place where medical students from top London universities come to learn, and nurses receive comprehensive training for both pre- and post-registration.'
P.S Since January there's been around 200 weird profiles I've muted or reported/banned. A few subscribe and try to initiate chats..I've spent a significant chunk of time checking profiles.
Thanks for the support, Victoria, and for the UK referral! I may boost it in my next post just so UK folks see it.
Ugh, the weird profiles. I check out almost every one too. Sometimes I’m not entirely sure if it’s a fraud or legit, so I leave it and monitor. But maybe I’ll start muting or reporting/banning. Is there an easy way to report?
You're always very welcome, Amy! Happy to help.
I literally check every subscriber, I go through likes, activity -I used to monitor more but now I report/ban a LOT more easily.
Heads up some of the lovely valued members of my community to recommend Carer Mentor, unintentionally streamed a LOT of these profiles after their notes went viral, and I asked them to remove their recommendation for now. We're mutually recommending in other ways but the 'new subscriber' auto-recommends can feed a wave...does that make sense? I've other thoughts but suffice to say, I monitor less and outright ban more to protect my publication space/those I recommend. Report-ban is simple from the 3 dots on the profile when you click through from the subscriber list - is that what you mean?
You are so right - me and another Substack writer here seem to “share” trolls, and it comes off of recommendations. Then i did some recon and noticed there were four specific newsletters that were in common among these bot-men, including mine and hers. So frustrating!
And yes, thank you for the three dots tip - that is what I meant.
I 'just' DM folks - often they're unaware whats happening... Things will slow down come end of March, they are already - did you notice the change in the dashboard and profile formats? The notes push is slowing. I recommend DMg to help each other avoid weird profiles. Feel free to check with me.
Also, I don't 'follow' folks as freely as I did...
Thanks - love your writing, and the tip about retina symptoms was something I never heard before.
Scary, right? I had never heard of it either until it happened to us.
Oh, Amy – what a difficult and worrying time it's been. Sending lots of well-wishes to you both.
PS If I were compiling an anthology of brilliant words about horrible illness, "We of the first variant. Pioneers in uncharted waters of decrepitude and lasting organ damage" would be the very first entry!!
Thanks so much, Marion. Things got a little worse here - my update will come out on Saturday. We are getting through it!
And I’m SO TICKLED that you picked out that quote! Thanks for seeing me 👀
Wishing baldy one hell of a recovery. So sorry to read all this. The insurance thing is madness.
For all the anger I feel at my own experience with the nhs in the uk, i am also incredibly grateful for what we have here. We don’t know we are born in this country sometimes. We have more support than we realise.
I think each system has its pros and cons. My therapist is Canadian and we compare notes on socialized medicine vs. the for profit system here. She can’t get her doc to order most of the tests that I can, so that’s one key difference. But then you do hit a wall sometimes where insurance just won’t pay.
Thanks for your kind words about Baldy. Unfortunately we just found out the surgery didn’t take and he needs another one. I’ll be updating in my next post.
So sorry to hear this. Thinking of you both a lot😘
Thank you 🙏🏻
Amy! I am SO sorry about Baldy. My God. You know our healthcare in this country infuriates me AND I am so glad you had space on your card to get him taken care of ASAP. I found out about retinal detachments a couple of years ago and was horrified that it was even a thing. Please let us know how his recovery is going over the coming months. I'm glad you two have each other to get through these violent life bends.
Sending you both my love. 💘
Thank you for reading and for feeling my shared outrage, dearest heart. I will definitely give updates 🫶🏻
My Tonic family you have certainly been through it these last few weeks! I have a recurring nightmare my teeth are falling out but it’s a holiday and the dentist is charging me double to have it fixed. Why do we live like this?? I know why but wow do we need to fight for better. I will never understand why our healthcare and insurance systems are for profit. What a scam. I’m glad Baldys vision is coming back and Zira has her moments of peace and I hope you are taking care of yourself as well. You are not alone in spirit 🖤
That’s a scary nightmare, Natalie! And you’re 100% right; this healthcare system of ours is a huge, inhumane RACKET.
And thank you ☺️. I’ll give Zira some extra scritches from her #1 Substack fan 😻
Glad your husband is ok. What a nightmare that sounds like. As a proofreader and editor (and an extremely near sighted person) the idea of retinal detachment keeps me up at night sometimes. I’m thankful I had an ophthalmologist a long time ago who told me about it and told me if I ever had “curtains” to go right to the ER. I have floaters regularly too so it’s hard to differentiate what’s normal or not. Had a few scares there. It’s a great thing to educate people on for sure (and had no idea it could be a side effect of long COVID!).
Yikes, Jackie - you’ve known about these scary things for a while now! Thanks for reading and commenting. And here’s to your retinas staying PUT 🤞🏻🤞🏻
Amy, really glad that your husband got the care he needed in time.
I have had retinal issues and you don't mess around with them.
My retina issues are due to occasional high spikes in PB (so far, no surgery needed) but after originally getting it under control I had a recurrence 10 years later - and yes, floaters and some crazy flashing lights.
No caffeine for me, pretty much ever.
The thought of losing your sight is very sobering. Best wishes to you both!
That’s so scary, Shayne! What is PB? I’m sorry if it’s obvious; I’ve had a long spoonie day today!
Sorry that. PB is usually a sandwich but this time it's a typo. Should have been BP. Also, fortunately my detachments haven't been accompanied by a tear. That sounds especially scary. That tissue can deform quite a bit without tearing.
I didn’t know that! Wow.
Geez, the hits just on coming!
It sounds like the tear and detachment ordeal is mostly over—poor Baldy, and you. That must have been so scary! ❤️
Apparently it’s touch and go for up to three months, but I’m staying hopeful that he continues recovering well with no complications 🤞🏻
Oh no, this is so scary! Eye things are no joke. I’ve been at high risk for retinal detachment because of being severely nearsighted since I was 7, and since the Long COVID diagnosis, it’s been an extra concern. After my reinfection I had a period of seeing lights in my peripheral vision, usually at night. It was nerve wracking but went away after several months, and seemed to be neurological according to my eye doctor. I really hope your husband heals up and the recovery is smooth sailing!
Also, thanks for the mention! I have another post coming soon!
Extra scary in that case, Steph! I hope you have an LC-literate eye doc?
Well, he’s been a great doc for over 20 years, and is open to learning about LC from me, but hasn’t seemed to know about all the risks for eye health post-COVID, no.
That’s a gem, in our world. Open to learning from you? Keep that man around.
Oh. And I don't care if it's illegal or not: If you drive around with your disabled placard hanging off your window, you are editing entire bicyclists, motorcycles, kids, dogs, and small cars out of your field of vision.
This is a great way to create more disabled people, but they won't want to be friends with you. (If they survive.)
A good doctor who understands our disease set will approve disabled license plates so you don't have to think about placards anymore.
100% agree
Yeeeee, did not know that retinal detachment could be on the bingo card! AND insurance denied you; I'm fuming. I hope you can fight that, given the circumstances. I've found they sometimes cave if you use their inane fax machine. And then call them to point out you did, because it's ONE FAX MACHINE FOR ALL OF BLUE CROSS BLUE SHIELD good lord I need a bigger font here to scream.
With how broad the diagnoses are, I do wonder if the Venn diagram for Long Covid and "mystery mostly-lady illness" is really a circle with fuzzy edges. Most MEeps have comorbidities far beyond ME/CFS, and for me, it's not even my worst symptom. I've got the organ damage et al, pre-pandy. It does seem like with enough insults (mine were viruses and e coli) the body tends to kinda do...the alien stuff our bodies are doing.
Yes to less screen time. Help. All the little song snippets from TikTok-via-Instagram have infiltrated my brain and I need it to stop.
Haha, those mysterious and archaic fax machines strike again 😂. There’s no fighting this, because there was no denial. No insurance companies at all pay for this yet. Believe me, it was the first question I asked.
I realized upon rereading my post that I made it sound like “no one before us ever had alien symptoms.” I’m sorry, I’ll go back and change the wording (when I get out from under the 15yo feline boss of the house 😼). I more meant in comparison to other long haulers of later variants. But I know our ME/CFS forepeople are the ones who really paved the way with WTF symptomology!
Well, it FELT like you were the first, because these diseases weren't wide spread or even medically studied much before! And a lot of us ME/CFSers hadn't made that much progress by pandy-time. Leave it if it resonates. The exact truth is sometimes at odds with brevity and punch in writing, I've found.
NO INSURANCE COMPANIES PAY FOR YOUR RETINAS TO NOT FALL OFF. Great. Wow. That makes total and complete sense. (Screams into a towel on your behalf.)
*ON WEEKENDS
Yes, only allow your retinas to fall off at REGULARLY SCHEDULED BUSINESS HOURS
aaaaaaaahhhhhhhhh
Hahaha, I’d roll my eyes, but it’s a Saturday and I don’t want to risk it 😂🤣
As always, great post. Thanks for the mention, also congrats on 2000 (even if some are sexy bots lol).
🥵😂
Really appreciated the way you wove detachment and acceptance together here. It feels raw, real, and deeply honest.