I’m crazy about keeping mold out of my water bottle. It drives my wife mad. Seeing this was vindicating! 😂 I loved the video about the nervous system signs of healing. I’m definitely experiencing many of them and it’s helpful to have a better understanding of where these emotions are coming from.
Nova is the cutest ever and that last pic is stellar!!
Re: the water bottle - if your wife saw what I saw in my husband’s water bottle, she wouldn’t be so opposed to you keeping your vigilance up!! I do a deep clean about once a week and several shortcut cleans in between (rinsing or wiping mouthpiece).
And that NS video was such a balm for me too. I’m so glad you found it helpful! How are you doing these days? Feel free to DM if you’d rather. Sending you ❤️🩹
As a former microbiologist (waaaaaaaay back when) any surface can build up a biofilm of bacteria so yup I could easily imagine the issues...handy tip - use Steradent fizz tablets - what's good for dentures is good for all kinds of ---bottles. xo
Hii I want to share, on the topic of stopping/starting meds, a post I wrote on questions to ask my prescriber when they offer a new med or med change (or ten new meds at once):
I've never been to med school, though I snuck into a bunch of their activities when I was in nursing school, but not only did we not learn about Deaf culture/cultures or any type of chronically ill or disabled communities, but we had some pretty ableist policies that kept one of my classmates from becoming a clinician -- because of her disabilities.
If I'm ever able to return to practice, I know my experience with longterm severe disability will only improve my practice. Can you imagine if we had more opportunities for culturally congruent care in this area?? I mean, I know you Amy have given this a lot of thought. And when I was a trans person running a trans care program, I know how valuable my transness was.
Thanks as always, Amy. And I wanted to let you know how much I've been thinking about and watching the CFS Recovery youtube situation...I've found Miguel's framing and explanations and concepts incredibly helpful and...dare i say...hopeful.
Great blog post, Crafting! May I amplify it in my next post?
Culturally congruent care…such great phrasing I’ve never heard before. I am trying to be a therapist who is available to chronically ill folks and using my lived experience and burgeoning understanding of ableism into my practice. I can definitely imagine how your transness was quite a resource for other trans folks!
And yay! re: gaining hope through Miguel’s videos. That’s how it started for me: building hope and belief gradually ☺️
Yep absolutely you may amplify, thank you for asking! Culturally congruent care is such a great concept, and definitely applicable to lots of aspects of our identities/experiences like class, region (e.g. my yankee self training in the South...realized that I was not able to provide culturally congruent care! even in urgent care we had to chat a bit before asking what brought the patient in, or else we were considered rude. Absolute shock to my system)...racialized identities, queerness, transness, you can imagine.
The lack of poor and working class clinician availability is something I have never seen discussed, but the barriers for Black and other providers of color to get through training and into practice...is I think where I first learned about the concept of and need for culturally congruent care. (And for anyone in training, this is how you find out who your friends will be in the program! They're the other people who want to bring resources back to their home communities, not the people who want to "go into a community" and tell them they're pooping and fucking wrong. cough cough my entire experience of public health grad school when specializing in abortion.)
"Burgeoning understanding of ableism" yep for sure. Heather Hogan wrote an excellent piece summer of 2020 that helped me first identify my need for an assistive mobility device (a cane but rapidly became a powerchair), called something like The Soft Butch who Couldn't, where HH discussed joining the crip community as a newbie and trying to be thoughtful about not speaking as representative of a marginalized community she (I think) was just joining. That kind of humility complicates it too, as you and I (it seems) are both people who weren't disabled until recently and even though it's been years now...we're never done learning. I personally benefit from constant reminders that the long haul is only long compared to some hauls. <3
As mentioned in the video, I'm pretty sure that without qigong, I would not have survived Long COVID and the stresses that the world was serving up at that point.
I want to give you a shout out for your comments on the way that government has been treating disadvantaged people with respect to SNAP, food and health care subsidies.
Here in our little village in Vermont, our community has helped to stock a food shelf inside the town clinic. Folks in the community can walk in any day that the clinic is open, to pick up shared groceries. This is how our community is fighting back. We will not tolerate starving people!
That is so heartening to hear, Mardi! I have to admit I was taken aback by a local legislator of ours advertising a food drive with the words “do your part.” I felt it was ignorant wording during a government shutdown that involved leaving hungry people in a lurch. I DID my part by paying taxes; now I expect the government to keep up its end of the bargain and provide the benefits! (Not that I don’t also donate, but I didn’t appreciate being shamed into it at a time when the government was failing people).
You left out the part where I had no idea how the referral system actually worked and patiently helped me update my misinformation 18 times! (Thank you.) But YESSSSSS we shall roll around in our 2-3 digit largesse.
Must add: I used Ally for YEARS before rec'ing it and would rec it even if they didn't pay me. Not only is the bucket feature GOLD for my brain, when my other bank recently biffed a connected transaction, they waved me off with no fees. The customer service was easy to talk to.
The rates are set by the Fed, not the bank, so yes, they will fluctuate, but it's the easiest lowest risk investment you can ever make...3+% interest annually (added monthly) and available within a few days if you need to pull it out.
Aww love how acrobatic Nova is - it's those yoga poses that give her extra flexibility! Smart little kitty! xo
I'm not sure if you've shared this in a previous post, Amy, but I reminded one of our friends recently about the 'D-dimer test', it's something I pushed for when Mum had pneumonia with Covid - it helps check for potential venous thromboembolism. The simple blood test can reassure anyone who's being pushed to discharge..
I’m crazy about keeping mold out of my water bottle. It drives my wife mad. Seeing this was vindicating! 😂 I loved the video about the nervous system signs of healing. I’m definitely experiencing many of them and it’s helpful to have a better understanding of where these emotions are coming from.
Nova is the cutest ever and that last pic is stellar!!
Haha, thanks! 😹
Re: the water bottle - if your wife saw what I saw in my husband’s water bottle, she wouldn’t be so opposed to you keeping your vigilance up!! I do a deep clean about once a week and several shortcut cleans in between (rinsing or wiping mouthpiece).
And that NS video was such a balm for me too. I’m so glad you found it helpful! How are you doing these days? Feel free to DM if you’d rather. Sending you ❤️🩹
Gonna DM ya 😊
As a former microbiologist (waaaaaaaay back when) any surface can build up a biofilm of bacteria so yup I could easily imagine the issues...handy tip - use Steradent fizz tablets - what's good for dentures is good for all kinds of ---bottles. xo
story:music ratio was a bit high 🤣👍
Hii I want to share, on the topic of stopping/starting meds, a post I wrote on questions to ask my prescriber when they offer a new med or med change (or ten new meds at once):
https://couchcrafts.wordpress.com/2025/02/27/prepping-for-appointments/ (and like you...I'm a clinician but i'm not yalls clinician and also i've let my licenses lapse now so. just friendly thoughts.)
I've never been to med school, though I snuck into a bunch of their activities when I was in nursing school, but not only did we not learn about Deaf culture/cultures or any type of chronically ill or disabled communities, but we had some pretty ableist policies that kept one of my classmates from becoming a clinician -- because of her disabilities.
If I'm ever able to return to practice, I know my experience with longterm severe disability will only improve my practice. Can you imagine if we had more opportunities for culturally congruent care in this area?? I mean, I know you Amy have given this a lot of thought. And when I was a trans person running a trans care program, I know how valuable my transness was.
Thanks as always, Amy. And I wanted to let you know how much I've been thinking about and watching the CFS Recovery youtube situation...I've found Miguel's framing and explanations and concepts incredibly helpful and...dare i say...hopeful.
Great blog post, Crafting! May I amplify it in my next post?
Culturally congruent care…such great phrasing I’ve never heard before. I am trying to be a therapist who is available to chronically ill folks and using my lived experience and burgeoning understanding of ableism into my practice. I can definitely imagine how your transness was quite a resource for other trans folks!
And yay! re: gaining hope through Miguel’s videos. That’s how it started for me: building hope and belief gradually ☺️
Yep absolutely you may amplify, thank you for asking! Culturally congruent care is such a great concept, and definitely applicable to lots of aspects of our identities/experiences like class, region (e.g. my yankee self training in the South...realized that I was not able to provide culturally congruent care! even in urgent care we had to chat a bit before asking what brought the patient in, or else we were considered rude. Absolute shock to my system)...racialized identities, queerness, transness, you can imagine.
The lack of poor and working class clinician availability is something I have never seen discussed, but the barriers for Black and other providers of color to get through training and into practice...is I think where I first learned about the concept of and need for culturally congruent care. (And for anyone in training, this is how you find out who your friends will be in the program! They're the other people who want to bring resources back to their home communities, not the people who want to "go into a community" and tell them they're pooping and fucking wrong. cough cough my entire experience of public health grad school when specializing in abortion.)
"Burgeoning understanding of ableism" yep for sure. Heather Hogan wrote an excellent piece summer of 2020 that helped me first identify my need for an assistive mobility device (a cane but rapidly became a powerchair), called something like The Soft Butch who Couldn't, where HH discussed joining the crip community as a newbie and trying to be thoughtful about not speaking as representative of a marginalized community she (I think) was just joining. That kind of humility complicates it too, as you and I (it seems) are both people who weren't disabled until recently and even though it's been years now...we're never done learning. I personally benefit from constant reminders that the long haul is only long compared to some hauls. <3
thanks for the plug!
🙌🏻
An action packed post if I've ever seen one Amy!
Thank you for the link to my post on addressing Chronic Inflammation with Qigong. https://longcovidjourney2wellness.substack.com/p/chronic-inflammation
As mentioned in the video, I'm pretty sure that without qigong, I would not have survived Long COVID and the stresses that the world was serving up at that point.
I want to give you a shout out for your comments on the way that government has been treating disadvantaged people with respect to SNAP, food and health care subsidies.
Here in our little village in Vermont, our community has helped to stock a food shelf inside the town clinic. Folks in the community can walk in any day that the clinic is open, to pick up shared groceries. This is how our community is fighting back. We will not tolerate starving people!
That is so heartening to hear, Mardi! I have to admit I was taken aback by a local legislator of ours advertising a food drive with the words “do your part.” I felt it was ignorant wording during a government shutdown that involved leaving hungry people in a lurch. I DID my part by paying taxes; now I expect the government to keep up its end of the bargain and provide the benefits! (Not that I don’t also donate, but I didn’t appreciate being shamed into it at a time when the government was failing people).
You left out the part where I had no idea how the referral system actually worked and patiently helped me update my misinformation 18 times! (Thank you.) But YESSSSSS we shall roll around in our 2-3 digit largesse.
Must add: I used Ally for YEARS before rec'ing it and would rec it even if they didn't pay me. Not only is the bucket feature GOLD for my brain, when my other bank recently biffed a connected transaction, they waved me off with no fees. The customer service was easy to talk to.
The rates are set by the Fed, not the bank, so yes, they will fluctuate, but it's the easiest lowest risk investment you can ever make...3+% interest annually (added monthly) and available within a few days if you need to pull it out.
Aww love how acrobatic Nova is - it's those yoga poses that give her extra flexibility! Smart little kitty! xo
I'm not sure if you've shared this in a previous post, Amy, but I reminded one of our friends recently about the 'D-dimer test', it's something I pushed for when Mum had pneumonia with Covid - it helps check for potential venous thromboembolism. The simple blood test can reassure anyone who's being pushed to discharge..
https://pmc.ncbi.nlm.nih.gov/articles/PMC7834437/.