Reading that you are 95% recovered brought tears to my eyes! I am so beyond happy for you!!!! I said “nooooooooo” out loud when I read you just stopped taking the second half of the hydroxyzine instead of quarter down haha, but I’m so glad you had the supports to get things back on track to tapper down and the symptoms dissipated. Yay to the trip and that you handled the entire experience without any negative effects! I wish we lived closer because everyone in our orbit calls my wife the cat whisperer. She takes excellent care of many a cats when friends go away. Not leaving water or engaging with the baby outside is unacceptable!
Haha, I’m sure you knew from experience what a train wreck it would be for me to go off any med that quickly 🫣. And I wish we lived closer too - I’d love to have your cat whisperer in our lives!
I’m really happy that you are getting better bit by bit too. If I can do it, I believe you can too 🙌🏻
It’s hard to know how fast is too fast though with tapering off or titration up. I feel like we all have that one experience of doing it too quickly and paying the price. 😩 Thanks for believing in my healing journey! I try to make a point to celebrate how far I’ve already come and seeing your progress always makes me feel even more certain in my own.
I really like how coach Jon said to not focus on the 100% number and just live your life—I agree that when you focus less on this imaginary arbitrary number, symptoms will gradually improve. Love the Simpson’s meme backing into the bush to visualize this 😂 I’ve definitely tried to put a number on my progress too and this has made me reframe how I see recovery!
When you said there’s no finish line with balloons when you hit 100% it kind of reminded me of a phrase my friend says that ‘life is not a Disney movie.’ There are times in life that may not look like a movie perfect moment but they are still beautiful!
Right?! That statement of his really brought me back down to earth. I really needed to hear it, because I’ve been hung up on this elusive feeling of perfect health that I felt was coming my way. But I’ll absolutely take my symptoms sinking into the bushes like Homer! 🤣
Haha, love you so much! YELL all you want here in the comments! 🤣 I appreciate such enthusiastic cheerleading from the most lovingly noir-cheerleader I know ☠️.
A double thanks back to you. I am saving this and will go through your writing within the next week or so, looks chock full of good stuff, just need some more time!
Well, you’re prolific with your Substack and I took an extra week between my posts, so there was good cause to include more of your great work here. And please don’t sweat it if you don’t get to my post! I know you’re busier than most family docs 🥵
So happy to hear you're at 95%. I get frustrated how much I've had to manage my own care and do my own research (especially on medicines), so I can't imagine how that journey has been for you with Long COVID. So glad the trip was great too! 🫶
So glad to hear about the 95%, Amy! And how wonderful that you were able to visit your college friends and your in-laws. I enjoyed many of the links you included, particularly the one about the Citicorp building. I live close to that building and kept imagining what might have happened!
I love the way you word things! 😁 the new breed of human - YES! I feel fundamentally changed by all this and I’m excited to never go back to what was as far as my capitalist indentured servitude. I’m inspired by the level of health and energy you’re feeling now 🥹
We currently have an Operation Domesticate Tang going on. He has the sweetest meow ever and sleeps in our plum tree. I fantasize about the day he can sleep on my lap. Until then, it's cans of delicious cat food, a warm blanket in the tractor shed, and lots of time hanging in each other's space. Ehem, us hanging in HIS space.
Re hydroxyzine. I take it too! Not every day, but my ND prescribed it about 4-5 years ago when I was having the hardest time sleeping with my dizziness. It helped so much, but I found that even a quarter of the pill does the trick, only as needed. I asked her about the anti-cholinergic properties and dementia risks and she said if it's not used every night, it has less of a chance of causing those neurological changes because the brain, on nights NOT taking the Hydrox, is getting REM cycling, and that's what it needs to flush and refresh. (I'm using my own words here now, not hers, this is my interpretation of what she said!)
All that to say though that she wanted me to try Zyrtec at night (which isn't anti-cholinergic at all) and I thought, that doesn't make me drowsy, why would THAT work? And surprise surprise, it helps me sleep! She said some people have histamine release in their brain at night and it can wake us up, so taking a Zyrtec is a really safe way to stay asleep without using the heavier hitters. Maybe something to explore? x
Kim, I’m so grateful for your comment. The hydroxyzine part and the Zyrtec are super interesting. I did try replacing the hydroxyzine with Zyrtec for a few days but it made me feel even worse cognitively and fatigue-wise. I don’t know what that’s about, other than maybe I don’t really need to be on either anymore? The allergist prescribed Allegra as a possible replacement for hydroxyzine, but taking that for a few days also didn’t seem to help. I’m just going to cut the hydroxyzine into quarters and then maybe go down to quarter every other night and hope for the best 🤞🏻.
And I love that you’re going through ODT at the same time we’re going through ODR 😸. We are seriously considering getting an hour of a feral cat behavioralist’s time to see what can be done. Ripley lives in our detached garage and has a heating pad under her kitty hut in there, so she’s set up pretty sweetly, but she spends all her time hanging out by our house entrances waiting for us to come out, so we feel like she wants to advance into the big house! We’ll see…more soon! 😻
hiiii i'm super jealous of your plum tree but also, seconding the cetirizine (aka zyrtec) as a possible tool -- i've been on levocetirizine which is xyzal = brand name for a while, it's the equivalent of two cetirizine tabs and i needed a quantity override to get an rx to take then twice a day per my allergist (who has since retired, but had a pretty exciting RFK-jr fanboy moment right before dropping the mic and all of his patients....but he was a very smart allergist! although.... ok)
i'm also hoping to titrate down and you sharing the specifics of your experience, though with a different med, Amy, is super helpful! i had a similar experience of trying ivabradine over metoprolol for my LC-related POTS, being given wrong info about transitioning from one to the other and having a terrible flare. (for anyone else, what i learned is that you shouldn't just stop metoprolol and start ivabradine! it seems like ivabradine works great for some but barely at all for others, you'll know right away whether its helping you, and don't suffer for a week waiting to see if it kicks in in the heat of summer...)
thanks kimberly for those hot tips about ways to take hydroxzine!
amy can you sum up what's going on in the "6 feet of distancing wont cut it" article? my brain is NOT THERE today or most days but i am pretty religiously practicing 2/3 -- as long as we are doing 2 out of 3 of the following: outside; distanced 6+ feet; masked PROPERLY AND MUTUALLY -- then i'm good. but if the 6 feet in the study was outdoor and masked i'd like to know! thxxxxxxx
Little know fun fact: I don’t often read all the articles I link to here. I just offer them for those who want to dive deeper. But my take on the social distancing study is the six-feet is kind of arbitrary and what matters more is that aerosols spread more slowly through very cold and very warm air (so seem to spread more easily in more cool or temperate air). It seems to say you still don’t want to be the person nearest in distance to an infected person.
Many of the ME/CFS folks in the CFS Recovery program I’m in (as well as the coaches who all recovered from ME/CFS or LC) said they leveled up after a virus. I do know a lot of people get worse after. I was happy not to.
I think however it’s really invalidating to say that people who have recovered never truly had ME/CFS. Many thousands who had it (and many who were housebound or bedbound) have recovered - some after decades with the illness. I had both LC and ME diagnoses. I was couchbound myself for a long time and had to give up my career, go on disability (after several denials), and go into a ton of debt. For someone to suggest I never had it is pretty offensive and hard to hear. I would never have chosen to crash-land my whole life like that.
I also don’t think it gets anyone who is still suffering anywhere to invalidate fellow patients the way you yourself wouldn’t want to be invalidated. We should be lifting each other up, not cutting each other down. No matter what, I wish the best for any person who goes through anything like this. It’s a fate I’d wish on no one.
I do not think the science is so clear on this. While you may not know anyone who has recovered from ME, clearly Amy has said that she does. So it seems like you can agree to disagree on this point. However, there is a clear clinical definition for ME/CFS. And there are those who (although it may be rare), after some or many years of living with the illness, no longer meet the clinical criteria for the illness. This may be more difficult to contend with for those who have had ME prior to the advent of Covid, because it does seem a little more likely for people with LC and ME to go on to a full recovery. (Unfortunate that person is not me after 5 years of living with both). But I can see how this may “bight” for a lot of folks who’ve had ME for many many years and don’t feel much hope for recovery.
Reading that you are 95% recovered brought tears to my eyes! I am so beyond happy for you!!!! I said “nooooooooo” out loud when I read you just stopped taking the second half of the hydroxyzine instead of quarter down haha, but I’m so glad you had the supports to get things back on track to tapper down and the symptoms dissipated. Yay to the trip and that you handled the entire experience without any negative effects! I wish we lived closer because everyone in our orbit calls my wife the cat whisperer. She takes excellent care of many a cats when friends go away. Not leaving water or engaging with the baby outside is unacceptable!
Haha, I’m sure you knew from experience what a train wreck it would be for me to go off any med that quickly 🫣. And I wish we lived closer too - I’d love to have your cat whisperer in our lives!
I’m really happy that you are getting better bit by bit too. If I can do it, I believe you can too 🙌🏻
It’s hard to know how fast is too fast though with tapering off or titration up. I feel like we all have that one experience of doing it too quickly and paying the price. 😩 Thanks for believing in my healing journey! I try to make a point to celebrate how far I’ve already come and seeing your progress always makes me feel even more certain in my own.
Definitely celebrate your wins! Even our smallest wins are huge considering where we’ve been!
I really like how coach Jon said to not focus on the 100% number and just live your life—I agree that when you focus less on this imaginary arbitrary number, symptoms will gradually improve. Love the Simpson’s meme backing into the bush to visualize this 😂 I’ve definitely tried to put a number on my progress too and this has made me reframe how I see recovery!
When you said there’s no finish line with balloons when you hit 100% it kind of reminded me of a phrase my friend says that ‘life is not a Disney movie.’ There are times in life that may not look like a movie perfect moment but they are still beautiful!
Right?! That statement of his really brought me back down to earth. I really needed to hear it, because I’ve been hung up on this elusive feeling of perfect health that I felt was coming my way. But I’ll absolutely take my symptoms sinking into the bushes like Homer! 🤣
Thanks for including my newsletter about the study suggesting we don't necessarily need 10K steps day!
95%!!!! A TRIUMPH!!! This makes me so incredibly happy, Amy!!! Yes, I AM YELING!!!
Precious Ripley 🥹 I love that you two are looking out for her.
It is so stressful finding new care providers. I’m so glad you’re feeling better and that you like your new PCP!
Loved hearing about your visit to your in-laws. Cozy Times, USA!
Got lost in the links and found so many fascinating things! Fiber! Scary ticks!!! Oh My!
I deal with a histamine intolerance/problem with inflammation so the fiber article was awesome. Thank you 💘
Haha, love you so much! YELL all you want here in the comments! 🤣 I appreciate such enthusiastic cheerleading from the most lovingly noir-cheerleader I know ☠️.
🥹🫂💕I love you!
Amy, a double shout out!!
A double thanks back to you. I am saving this and will go through your writing within the next week or so, looks chock full of good stuff, just need some more time!
Well, you’re prolific with your Substack and I took an extra week between my posts, so there was good cause to include more of your great work here. And please don’t sweat it if you don’t get to my post! I know you’re busier than most family docs 🥵
You’re an inspiration, Amy!
☺️ thank you Amy!
I’m so happy to read about your recovery! Go, you!! 💙
Thank you so much! And thanks for showing up here 🫶🏻
So happy to hear you're at 95%. I get frustrated how much I've had to manage my own care and do my own research (especially on medicines), so I can't imagine how that journey has been for you with Long COVID. So glad the trip was great too! 🫶
Thanks Jackie!! It is truly astonishing that we are left to figure out these meds on our own. We’re all junior pharmacologists by now 🤦🏼♀️
So glad to hear about the 95%, Amy! And how wonderful that you were able to visit your college friends and your in-laws. I enjoyed many of the links you included, particularly the one about the Citicorp building. I live close to that building and kept imagining what might have happened!
Thanks Paula!! And wasn’t that wild?! I’m so glad it never collapsed in your midst! 😳
Awww so absence does make Ripley's heart grow fonder!
What a rough rollercoaster for you, geez. Sending over some hugs.
xo
We had no idea Ripley was THAT attached to us until we left! 🥹.
Thank you for your kind words of support Victoria. I feel stable now, but it was indeed a roller coaster of a summer!
So much good stuff in here!
Apart from the cat sitter and the meds. But so insightful and lots to takeaway that’s helpful.
One of my clients found out she’s on two medications that are no longer recommended to take together and she’s been on them 30years!!
I asked her last night what’s happening and a review still hasn’t been done, wtf 🤯🤯
Soooooooo thrilled about your visit to the in laws.
I can pretty much get away with a lot now.
Haven’t tracked where I feel like I am in recovery percentage terms wise for aaaaages.
I was thinking 90% the other year but a mild 3 month relapse squished that down 😆
For the past 18 months, I haven’t ever experienced health and energy like what I do now - not in my entire adult life.
So even though I’m odd days each month symptomatic, does that put me at 300% improved⁉️ no, maybe even more like 3000%😆
I feel like the new breed of human. Like the ones we are going to slowly wake up to the possibility that we can all be.
& that the hideous monstrosity of a chronic illness journey is all part of that ascension.
I love the way you word things! 😁 the new breed of human - YES! I feel fundamentally changed by all this and I’m excited to never go back to what was as far as my capitalist indentured servitude. I’m inspired by the level of health and energy you’re feeling now 🥹
We currently have an Operation Domesticate Tang going on. He has the sweetest meow ever and sleeps in our plum tree. I fantasize about the day he can sleep on my lap. Until then, it's cans of delicious cat food, a warm blanket in the tractor shed, and lots of time hanging in each other's space. Ehem, us hanging in HIS space.
Re hydroxyzine. I take it too! Not every day, but my ND prescribed it about 4-5 years ago when I was having the hardest time sleeping with my dizziness. It helped so much, but I found that even a quarter of the pill does the trick, only as needed. I asked her about the anti-cholinergic properties and dementia risks and she said if it's not used every night, it has less of a chance of causing those neurological changes because the brain, on nights NOT taking the Hydrox, is getting REM cycling, and that's what it needs to flush and refresh. (I'm using my own words here now, not hers, this is my interpretation of what she said!)
All that to say though that she wanted me to try Zyrtec at night (which isn't anti-cholinergic at all) and I thought, that doesn't make me drowsy, why would THAT work? And surprise surprise, it helps me sleep! She said some people have histamine release in their brain at night and it can wake us up, so taking a Zyrtec is a really safe way to stay asleep without using the heavier hitters. Maybe something to explore? x
Kim, I’m so grateful for your comment. The hydroxyzine part and the Zyrtec are super interesting. I did try replacing the hydroxyzine with Zyrtec for a few days but it made me feel even worse cognitively and fatigue-wise. I don’t know what that’s about, other than maybe I don’t really need to be on either anymore? The allergist prescribed Allegra as a possible replacement for hydroxyzine, but taking that for a few days also didn’t seem to help. I’m just going to cut the hydroxyzine into quarters and then maybe go down to quarter every other night and hope for the best 🤞🏻.
And I love that you’re going through ODT at the same time we’re going through ODR 😸. We are seriously considering getting an hour of a feral cat behavioralist’s time to see what can be done. Ripley lives in our detached garage and has a heating pad under her kitty hut in there, so she’s set up pretty sweetly, but she spends all her time hanging out by our house entrances waiting for us to come out, so we feel like she wants to advance into the big house! We’ll see…more soon! 😻
Oh man, if you learn anything from the feral cat behavioralist, please keep me posted! x
Will do, absolutely!
hiiii i'm super jealous of your plum tree but also, seconding the cetirizine (aka zyrtec) as a possible tool -- i've been on levocetirizine which is xyzal = brand name for a while, it's the equivalent of two cetirizine tabs and i needed a quantity override to get an rx to take then twice a day per my allergist (who has since retired, but had a pretty exciting RFK-jr fanboy moment right before dropping the mic and all of his patients....but he was a very smart allergist! although.... ok)
i'm also hoping to titrate down and you sharing the specifics of your experience, though with a different med, Amy, is super helpful! i had a similar experience of trying ivabradine over metoprolol for my LC-related POTS, being given wrong info about transitioning from one to the other and having a terrible flare. (for anyone else, what i learned is that you shouldn't just stop metoprolol and start ivabradine! it seems like ivabradine works great for some but barely at all for others, you'll know right away whether its helping you, and don't suffer for a week waiting to see if it kicks in in the heat of summer...)
thanks kimberly for those hot tips about ways to take hydroxzine!
amy can you sum up what's going on in the "6 feet of distancing wont cut it" article? my brain is NOT THERE today or most days but i am pretty religiously practicing 2/3 -- as long as we are doing 2 out of 3 of the following: outside; distanced 6+ feet; masked PROPERLY AND MUTUALLY -- then i'm good. but if the 6 feet in the study was outdoor and masked i'd like to know! thxxxxxxx
Little know fun fact: I don’t often read all the articles I link to here. I just offer them for those who want to dive deeper. But my take on the social distancing study is the six-feet is kind of arbitrary and what matters more is that aerosols spread more slowly through very cold and very warm air (so seem to spread more easily in more cool or temperate air). It seems to say you still don’t want to be the person nearest in distance to an infected person.
As always, so many helpful bits here!!!
Thank you!
!!!!!!!!!!!!!!!!!!!
😎🙌🏻
Many of the ME/CFS folks in the CFS Recovery program I’m in (as well as the coaches who all recovered from ME/CFS or LC) said they leveled up after a virus. I do know a lot of people get worse after. I was happy not to.
I think however it’s really invalidating to say that people who have recovered never truly had ME/CFS. Many thousands who had it (and many who were housebound or bedbound) have recovered - some after decades with the illness. I had both LC and ME diagnoses. I was couchbound myself for a long time and had to give up my career, go on disability (after several denials), and go into a ton of debt. For someone to suggest I never had it is pretty offensive and hard to hear. I would never have chosen to crash-land my whole life like that.
I also don’t think it gets anyone who is still suffering anywhere to invalidate fellow patients the way you yourself wouldn’t want to be invalidated. We should be lifting each other up, not cutting each other down. No matter what, I wish the best for any person who goes through anything like this. It’s a fate I’d wish on no one.
I do not think the science is so clear on this. While you may not know anyone who has recovered from ME, clearly Amy has said that she does. So it seems like you can agree to disagree on this point. However, there is a clear clinical definition for ME/CFS. And there are those who (although it may be rare), after some or many years of living with the illness, no longer meet the clinical criteria for the illness. This may be more difficult to contend with for those who have had ME prior to the advent of Covid, because it does seem a little more likely for people with LC and ME to go on to a full recovery. (Unfortunate that person is not me after 5 years of living with both). But I can see how this may “bight” for a lot of folks who’ve had ME for many many years and don’t feel much hope for recovery.
So true. Unfortunately..