Thank you for the awesome round up! I saw a lot of articles I’ve missed that I’m excited to dive into. Also looking forward to hearing the result of your HAT test and ferritin results. As someone who once walked around with a ferritin of zero… it’s not fun.
PS love the “surviving out of spite” photo. I feel that deep in my bones!
In terms of whether or not to do the hybrid style - I’m still too new and catching up on your back catalogue so I may not be useful. So I vote for whatever makes most sense for YOU and your spoons. I know how long some articles to take (and how many spoons they require). I also hope you find yourself with a few extra spoons as we transition out of summer (my worst season)
I love your vote 😌. Thank you! I think that will be exactly how I’m guided moving ahead.
And I actually made myself a note to share my HAT results with you specifically based on comments we were writing back and forth to each other a few weeks ago. So funny. I’ll add the ferritin to that mix! (And…you had a ferritin count of ZERO? 🤯 that’s unthinkable!)
I did. Despite iron infusions. It’s ridiculous they left me like that for so long - because if you’re at zero and you have an accident or bleed… you can end up near death much quicker when you have no reserves. That’s why my hysterectomy had to be done as an emergency - the bleeding got so heavy and there’s me with my ferritin of zero being unable to cope. I hope your number blows mine outta the water! 😂
Wow, yeah - you’re not even on the cusp, like I am. I’m so glad to have helped you learn about the test! That woman’s website has great blog posts and info on being an HSP.
Thank you for amplifying my podcast and substack, Amy. I appreciate it. So many great recommendations in this post, plus memes and puns - i can't with 'fecal friends'
Haha, the best part about NOT being a doctor doing one of these newsletters is that I don’t have to worry about my dignity! 😆 And I love keeping these challenging topics light and fun.
There’s a book coming with insight guidance and wisdom around all those strategies so readers can be inspired and feel better supported along their own path (if, of course, they resonate - it won’t be for everyone).
Hay house have fed back that this would be the most compelling book I’m publishing (though I’m still publishing Migraine & Me: Walking the Warriors Path and Migraine and Me: The Journal before hand as there’s a lot in here too).
I’ll be gifting copies to you. I’ve always intended to send a long a token of my appreciation for all the work you do with your wish list and never (yet) got round to it 🙃
I couldn’t stop thinking about your log log (not in a creepy way I promise)… and I’m trying to remember if you have EDS? Something that helped me drastically with my motility issues was high dose vitamin C. It makes you go - but it also cuts down on bruising and bleeding. My gums and nose would bleed daily and stopped completely when I got on a high enough dose. Cut my limb bruising down by about 50%.
Only downside is it can be a pain with MCAS. Many of us don’t tolerate citric acid. But there are other sources like camu camu that can work really well!
Welcome back - who doesn’t love repeat customers?!
I do not have EDS. I have been on Vitamin C supplements (maybe 1000mg?) and it made no difference to my, errr, logs. Same with magnesium, which seems to give everyone except me loose logs.
Happy to be a repeat customer! Though when I say high dose… I mean high dose lol. 1000mg definitely wouldn’t make a difference. I’m on 9 grams (just for comparison sake). 3-5 grams usually makes a difference in logs for most people though I wouldn’t do it without checking with your team! I basically take 1000mg every hour.
The first “Examined” post is behind a paywall, just FYI. But on to your posting dilemma. It seems like we readers like both the in depth posts and the round-ups? It sounds to me like they would not be put off if there was more one than the other because we like them both, so maybe more Antidotes with the occasional longer piece as spoons allow?
I like this suggestion, Leanne. I do accumulate A LOT of links in two weeks’ time, and it pains the type A in me to keep them from y’all. My “other pursuits” I mentioned will not really let up until possibly next spring, but then they’ll start up again. I am just not sure I’ll have the time for longer posts. I think I may do hybrid for the time being, but it’s good to know you’d welcome the longer narrative posts if I ever have one in me that’s itching to come out. Thanks for the feedback!
HSP here! Also I plan to increase our friendship by relating in excruciating detail all my poop problems!!! 💩💩💩. They may not be a symptom of my LC however. Perhaps it's my steady diet of Korean cheese ramen conjoined to honey-nut otios!!
Ha ha, this is hilarious! Let’s keep the poop talk going 😄.
Question for you, fellow HSP: do you find the emojis next to all my links to be sensory overload? I have heard from a fellow long hauler who said she does. I’d be sad not to use them anymore because I like to keep the newsletter light and fun for the most part. Just curious what you think.
No, I like them! Not overload at all for me! But the brain fog or damage is for real, so it does tire me out both reading and writing anything long. I like visuals and the humorous tone here is precious to me and you are an exemplar! Now do I get a free prize or something?
Your sense of humor is what gives life to this whole enterprise. There are any number of link aggregator sites and they are all very valuable. But what makes your site so sui generis and in a class of its own is the light hearted spirit conjoined with the serious actionable information.
A great round up and update, thank you! I could comment on almost all of these but just a few targeted ones. Which probiotic are you trying? I’ve been partial to Visbiome(formerly called VSL #3) as it actually has some studies showing benefits published in peer reviewed journals for conditions like IBS and IBD. I bet the Xifaxin will be an exclusion criteria for the Vassar study but don’t let that hold up your doctors plan… and among all the other outrageous stuff going on in this democracy, I’ll gladly take up the banner for the right to mask. Bans are more about enforced group fictional narratives that the pandemic is over, and tribal conformity over personal freedom. Sick stuff, along with racism, control of women’s bodies, intrusion into family privacy, unfettered AK assault rifle access, and environmental plunder. I digress, sorry, and many thanks for the links! Have a great weekend
Thanks for reading, doc! Funny - I just sent an email to my racial equity working group yesterday about the problems with these mask bans. I’m thinking of turning that email into a Notes post - stay tuned!
And thank you for turning on the part of my brain that temporarily forgot that I shouldn’t take the antibiotic until after the poop tubes come in the mail! Yikes, almost forgot. I can hold off on the meds - been living with this for 4.5 years, what’s another few weeks? I’m so glad you pointed this out - thank you!
As for probiotic, I’ve ordered SFI (used to be Klaire labs) Ther-Biotic high potency. It’s 11 strains and 100 billion units. I’ve been on this one before at the behest of my infectious disease doc who has treated ME/CFS (and now LC) for years. Pretty pricey, but I likely won’t take forever.
Thank you for the awesome round up! I saw a lot of articles I’ve missed that I’m excited to dive into. Also looking forward to hearing the result of your HAT test and ferritin results. As someone who once walked around with a ferritin of zero… it’s not fun.
PS love the “surviving out of spite” photo. I feel that deep in my bones!
In terms of whether or not to do the hybrid style - I’m still too new and catching up on your back catalogue so I may not be useful. So I vote for whatever makes most sense for YOU and your spoons. I know how long some articles to take (and how many spoons they require). I also hope you find yourself with a few extra spoons as we transition out of summer (my worst season)
I love your vote 😌. Thank you! I think that will be exactly how I’m guided moving ahead.
And I actually made myself a note to share my HAT results with you specifically based on comments we were writing back and forth to each other a few weeks ago. So funny. I’ll add the ferritin to that mix! (And…you had a ferritin count of ZERO? 🤯 that’s unthinkable!)
I did. Despite iron infusions. It’s ridiculous they left me like that for so long - because if you’re at zero and you have an accident or bleed… you can end up near death much quicker when you have no reserves. That’s why my hysterectomy had to be done as an emergency - the bleeding got so heavy and there’s me with my ferritin of zero being unable to cope. I hope your number blows mine outta the water! 😂
Sooo scary!!
I have been wondering if I would be considered a highly sensitive person, thanks for including that link! No guessing anymore, I scored 26!😬
Wow, yeah - you’re not even on the cusp, like I am. I’m so glad to have helped you learn about the test! That woman’s website has great blog posts and info on being an HSP.
Thank you for amplifying my podcast and substack, Amy. I appreciate it. So many great recommendations in this post, plus memes and puns - i can't with 'fecal friends'
Haha, the best part about NOT being a doctor doing one of these newsletters is that I don’t have to worry about my dignity! 😆 And I love keeping these challenging topics light and fun.
Thanks so much for the shout out!
There’s a book coming with insight guidance and wisdom around all those strategies so readers can be inspired and feel better supported along their own path (if, of course, they resonate - it won’t be for everyone).
Hay house have fed back that this would be the most compelling book I’m publishing (though I’m still publishing Migraine & Me: Walking the Warriors Path and Migraine and Me: The Journal before hand as there’s a lot in here too).
Can’t wait, Amber! Cheering you on with both books and will boost when you’re ready 🤗
I’ll be gifting copies to you. I’ve always intended to send a long a token of my appreciation for all the work you do with your wish list and never (yet) got round to it 🙃
You’re the best 🌟
I’m back!!! lol
I couldn’t stop thinking about your log log (not in a creepy way I promise)… and I’m trying to remember if you have EDS? Something that helped me drastically with my motility issues was high dose vitamin C. It makes you go - but it also cuts down on bruising and bleeding. My gums and nose would bleed daily and stopped completely when I got on a high enough dose. Cut my limb bruising down by about 50%.
Only downside is it can be a pain with MCAS. Many of us don’t tolerate citric acid. But there are other sources like camu camu that can work really well!
Welcome back - who doesn’t love repeat customers?!
I do not have EDS. I have been on Vitamin C supplements (maybe 1000mg?) and it made no difference to my, errr, logs. Same with magnesium, which seems to give everyone except me loose logs.
Happy to be a repeat customer! Though when I say high dose… I mean high dose lol. 1000mg definitely wouldn’t make a difference. I’m on 9 grams (just for comparison sake). 3-5 grams usually makes a difference in logs for most people though I wouldn’t do it without checking with your team! I basically take 1000mg every hour.
It’s nice to have the choice depending on energy and mood. I always at least scan the new studies.
PS. The log log was the best thing I read on Notes all week.
🤭🫠
The first “Examined” post is behind a paywall, just FYI. But on to your posting dilemma. It seems like we readers like both the in depth posts and the round-ups? It sounds to me like they would not be put off if there was more one than the other because we like them both, so maybe more Antidotes with the occasional longer piece as spoons allow?
I like this suggestion, Leanne. I do accumulate A LOT of links in two weeks’ time, and it pains the type A in me to keep them from y’all. My “other pursuits” I mentioned will not really let up until possibly next spring, but then they’ll start up again. I am just not sure I’ll have the time for longer posts. I think I may do hybrid for the time being, but it’s good to know you’d welcome the longer narrative posts if I ever have one in me that’s itching to come out. Thanks for the feedback!
HSP here! Also I plan to increase our friendship by relating in excruciating detail all my poop problems!!! 💩💩💩. They may not be a symptom of my LC however. Perhaps it's my steady diet of Korean cheese ramen conjoined to honey-nut otios!!
Ha ha, this is hilarious! Let’s keep the poop talk going 😄.
Question for you, fellow HSP: do you find the emojis next to all my links to be sensory overload? I have heard from a fellow long hauler who said she does. I’d be sad not to use them anymore because I like to keep the newsletter light and fun for the most part. Just curious what you think.
No, I like them! Not overload at all for me! But the brain fog or damage is for real, so it does tire me out both reading and writing anything long. I like visuals and the humorous tone here is precious to me and you are an exemplar! Now do I get a free prize or something?
Make that "oatios"! Horrid little things but I love them.
First choice Hybrid form- best of both worlds
Second choice lots o' links- fun, fun, fun.
Third choice...long essays- my brain fog kicks in and my chin hits my chest!! Don't take it personally Amy, it's my fate in all my subscriptions!
No offense taken, Michael! I’m glad I asked the question - this is exactly the feedback I wanted. I think the links are fun too!
Your sense of humor is what gives life to this whole enterprise. There are any number of link aggregator sites and they are all very valuable. But what makes your site so sui generis and in a class of its own is the light hearted spirit conjoined with the serious actionable information.
Always a great read! Thanks for the mention!
Thanks for all you do to raise our awareness!
A great round up and update, thank you! I could comment on almost all of these but just a few targeted ones. Which probiotic are you trying? I’ve been partial to Visbiome(formerly called VSL #3) as it actually has some studies showing benefits published in peer reviewed journals for conditions like IBS and IBD. I bet the Xifaxin will be an exclusion criteria for the Vassar study but don’t let that hold up your doctors plan… and among all the other outrageous stuff going on in this democracy, I’ll gladly take up the banner for the right to mask. Bans are more about enforced group fictional narratives that the pandemic is over, and tribal conformity over personal freedom. Sick stuff, along with racism, control of women’s bodies, intrusion into family privacy, unfettered AK assault rifle access, and environmental plunder. I digress, sorry, and many thanks for the links! Have a great weekend
Thanks for reading, doc! Funny - I just sent an email to my racial equity working group yesterday about the problems with these mask bans. I’m thinking of turning that email into a Notes post - stay tuned!
And thank you for turning on the part of my brain that temporarily forgot that I shouldn’t take the antibiotic until after the poop tubes come in the mail! Yikes, almost forgot. I can hold off on the meds - been living with this for 4.5 years, what’s another few weeks? I’m so glad you pointed this out - thank you!
As for probiotic, I’ve ordered SFI (used to be Klaire labs) Ther-Biotic high potency. It’s 11 strains and 100 billion units. I’ve been on this one before at the behest of my infectious disease doc who has treated ME/CFS (and now LC) for years. Pretty pricey, but I likely won’t take forever.