Thanks for the shout, Amy. It's been a tough week! But also, congratulations on getting your disability case resolved! High five! That entire process is so exhausting and emotionally draining. I hope you've taken a bit of time for yourself to just sit with that joy.
Thanks Robin! I had tacos, a margarita, and ice cream today to celebrate 😋. I hope you’ve had abundant self care this week too. An exhausting week for gender fuckery indeed.
I was listening to the Tim Walz interview on the Ezra Klein show and his logic for free school lunch for all rather than only those at certain income levels because of simplicity, efficiency, and social status ramifications was so inspiring because bureaucracy is, while sometimes well meaning, also horrifying to navigate - I bet we spend more money determining if someone is eligible for benefits than just giving those benefits to anyone who can moderately show they have a disability. Glad you were triumphant if mostly morally not monetarily.
And gosh I’ve already got an Olympics hangover bad 😫love those kitties staring intently at the tv Rizzie did the same thing 🖤
That makes tremendous sense and is so full of integrity. No child should have to be embarrassed by getting free lunch. And the federal government is notorious for inefficiency and extreme waste, so I bet you’re right - it’s probably less costly to believe people’s doctors who are vouching for them.
Congrats to finishing the bureaucratic marathon! And in your favor to boot!
Somewhat related, it feels like there's cognitive dissonance at play regarding (long) Covid - among other things, what would happen if we really stopped to admit to ourselves just how ensnared we are in the techno-corporate mainframe. So we hum a few bars and fake it...
Tagged a bunch of your links as usual to read at a suitable pace for my brain. Appreciate the effort and spoons that go into this.
Absolutely - capitalism has us completely in its grip! And thank you for taking care of yourself and pacing your way through these links. It was a hefty one - over two weeks of me accumulating links 🤦🏼♀️
Congrats on successfully getting the application processes behind you. I've always thought that getting disability benefits was some sort of cruel joke. No healthy person could manage all of the hoops they expect you to jump through.
And to your point, former distance athlete here (double centuries were my thing - a 60 mile cool-down ride was my last act as a healthy person.
I literally had to turn off the TV watching Lyle breathe into the faces of all those volunteers who were innocently trying to render aid.
Omg, I was thinking the same thing about how close those medical personnel were getting to Lyles - did they know then that he had COVID? It was really unspeakably selfish.
Amazing news about your disability allowance. Although, like you say, this doesn’t really cut any costs. Though I am glad to hear you were seen, validated, considered and the intensity of what you’ve been through has achieved a result (in this case).
Definitely mask on an airplane, unless perhaps you're flying in a 747 or similar, older model aircraft. Older aircraft use 100% fresh air in the cabin, but newer models use only 50% (and 50% recirculated) in order to be more fuel efficient. The airlines will claim their HEPA-filtered, re-circulated air is just as good as fresh; but with airlines looking to cut costs at every opportunity, I don't trust them to change the filters as often as needed. So you won't be seeing my (sort of) pearly whites when flying either!
Fantastic collection as usual, thank you Amy. The Olympic links and discussion and your own experience with coming into this as a fit, athletic person are quite alarming, sobering, and helpful to others.
You too! It's invaluable to hear your experience and follow what you are reading/finding out there along with the rest of us. I find that most of my highly motivated and intelligent patients know their conditions on a level I can't, unless I share that first person experience of having the condition, too.
Thank you for including my stack in this - it brightened up my day. I also loved the Olympic instagram video … sent it to my family to see if they would recreate it (unfortunately they weren’t quite as enthused as I had hoped!)
Gingers - we’re a stubborn lot but that also makes us great! One day I will tell the story about how my vEDS was missed and literally blamed on being a redhead. Sigh.
My PCP gaslit me when I kept telling her something was wrong months after having had COVID. She ran basic bloodwork and sent me for a chest X-ray before declaring, “you’re perfectly healthy, Amy.” I pushed her after that statement but she just threw her hands up. I decided right then and there that I was leaving her, after more than 10 years.
Later in the year, when I had been seen by several other doctors who all agreed I had long COVID, I sent her a message in the portal to tell her I had left her care and why. She clutched her pearls. Tried to tell me she referred me to a neurologist, which was a total lie. It was satisfying to let her know that I felt she let me down by being unwilling to keep fighting for me. Even docs in the early days when no one knew long COVID could be a thing said to me, “I’m so sorry you’re still suffering, but we just don’t know enough yet.” At least that response had grace and humility to it.
I’m glad you were able to leave and find someone else (and get the care you deserved!). I was so fortunate to have a wonderful GP who believed me even though he couldn’t figure out what was wrong. He never gave up and kept referring & researching and validating me. It was a gift.
OMG, congratulations for beating the man (SSA) who’s keeping us down. So gratified to hear there are a few good and honorable judges left in the world.
I have been watching a ton of Olympics, too. I am looking forward to the Paralympics. I hope the coverage of those games is at least as good as last time; which was pretty good.
We have been watching the Olympics on Peacock, too. I especially like being able to look for stuff to watch by sport. (Words I never thought I would say!)
I am hoping that they do a comparable job with the Paralympics.
Thanks for the shout, Amy. It's been a tough week! But also, congratulations on getting your disability case resolved! High five! That entire process is so exhausting and emotionally draining. I hope you've taken a bit of time for yourself to just sit with that joy.
Thanks Robin! I had tacos, a margarita, and ice cream today to celebrate 😋. I hope you’ve had abundant self care this week too. An exhausting week for gender fuckery indeed.
I was listening to the Tim Walz interview on the Ezra Klein show and his logic for free school lunch for all rather than only those at certain income levels because of simplicity, efficiency, and social status ramifications was so inspiring because bureaucracy is, while sometimes well meaning, also horrifying to navigate - I bet we spend more money determining if someone is eligible for benefits than just giving those benefits to anyone who can moderately show they have a disability. Glad you were triumphant if mostly morally not monetarily.
And gosh I’ve already got an Olympics hangover bad 😫love those kitties staring intently at the tv Rizzie did the same thing 🖤
That makes tremendous sense and is so full of integrity. No child should have to be embarrassed by getting free lunch. And the federal government is notorious for inefficiency and extreme waste, so I bet you’re right - it’s probably less costly to believe people’s doctors who are vouching for them.
Congrats to finishing the bureaucratic marathon! And in your favor to boot!
Somewhat related, it feels like there's cognitive dissonance at play regarding (long) Covid - among other things, what would happen if we really stopped to admit to ourselves just how ensnared we are in the techno-corporate mainframe. So we hum a few bars and fake it...
Tagged a bunch of your links as usual to read at a suitable pace for my brain. Appreciate the effort and spoons that go into this.
Absolutely - capitalism has us completely in its grip! And thank you for taking care of yourself and pacing your way through these links. It was a hefty one - over two weeks of me accumulating links 🤦🏼♀️
Congrats on successfully getting the application processes behind you. I've always thought that getting disability benefits was some sort of cruel joke. No healthy person could manage all of the hoops they expect you to jump through.
And to your point, former distance athlete here (double centuries were my thing - a 60 mile cool-down ride was my last act as a healthy person.
I literally had to turn off the TV watching Lyle breathe into the faces of all those volunteers who were innocently trying to render aid.
The image was horrifying and traumatizing.
And again, congratulations!🍾
Omg, I was thinking the same thing about how close those medical personnel were getting to Lyles - did they know then that he had COVID? It was really unspeakably selfish.
Amazing news about your disability allowance. Although, like you say, this doesn’t really cut any costs. Though I am glad to hear you were seen, validated, considered and the intensity of what you’ve been through has achieved a result (in this case).
Thanks Amber!
Thanks for the shout out! And thanks for what you do :)
Right back atcha! ☀️
Definitely mask on an airplane, unless perhaps you're flying in a 747 or similar, older model aircraft. Older aircraft use 100% fresh air in the cabin, but newer models use only 50% (and 50% recirculated) in order to be more fuel efficient. The airlines will claim their HEPA-filtered, re-circulated air is just as good as fresh; but with airlines looking to cut costs at every opportunity, I don't trust them to change the filters as often as needed. So you won't be seeing my (sort of) pearly whites when flying either!
Fantastic collection as usual, thank you Amy. The Olympic links and discussion and your own experience with coming into this as a fit, athletic person are quite alarming, sobering, and helpful to others.
I’m humbled that you regularly take the time to stop by here, Doc. Thank you for your support here and elsewhere on Substack 🙏🏻
You too! It's invaluable to hear your experience and follow what you are reading/finding out there along with the rest of us. I find that most of my highly motivated and intelligent patients know their conditions on a level I can't, unless I share that first person experience of having the condition, too.
P.S. - the header looks great
Thank you for including my stack in this - it brightened up my day. I also loved the Olympic instagram video … sent it to my family to see if they would recreate it (unfortunately they weren’t quite as enthused as I had hoped!)
From one ginger to another - thanks for reading and for what you’re doing here on Substack 🧡
Gingers - we’re a stubborn lot but that also makes us great! One day I will tell the story about how my vEDS was missed and literally blamed on being a redhead. Sigh.
Oh, FFS 🤦🏼♀️
Genuinely wish I could go back to that doctor and shove my test results in her face. It wouldn’t accomplish anything - but it would make me feel good!
My PCP gaslit me when I kept telling her something was wrong months after having had COVID. She ran basic bloodwork and sent me for a chest X-ray before declaring, “you’re perfectly healthy, Amy.” I pushed her after that statement but she just threw her hands up. I decided right then and there that I was leaving her, after more than 10 years.
Later in the year, when I had been seen by several other doctors who all agreed I had long COVID, I sent her a message in the portal to tell her I had left her care and why. She clutched her pearls. Tried to tell me she referred me to a neurologist, which was a total lie. It was satisfying to let her know that I felt she let me down by being unwilling to keep fighting for me. Even docs in the early days when no one knew long COVID could be a thing said to me, “I’m so sorry you’re still suffering, but we just don’t know enough yet.” At least that response had grace and humility to it.
I’m glad you were able to leave and find someone else (and get the care you deserved!). I was so fortunate to have a wonderful GP who believed me even though he couldn’t figure out what was wrong. He never gave up and kept referring & researching and validating me. It was a gift.
Thank you for the shoutout, Amy! Also happy to hear about your disability update! <3
Thanks very much, Elle! 🧡
So happy to hear your disability update! XOXO
Thank you, Katrina! ☀️
Thanks Amy! Your post has convinced me to wear a mask on a flight I am taking this afternoon! ✈️
I’m so glad! Stay safe, my friend 🤍
Oops, forgot to say I loved the video of the home Olympics—especially the dad!
Haha, he was the best! The daughter was super flexible, too. She was a convincing fake Olympian 😂
OMG, congratulations for beating the man (SSA) who’s keeping us down. So gratified to hear there are a few good and honorable judges left in the world.
I have been watching a ton of Olympics, too. I am looking forward to the Paralympics. I hope the coverage of those games is at least as good as last time; which was pretty good.
Kitties for the Gold!
Thanks Teri! 🫶🏻
I’ve been watching it all on Peacock - we cut cable last year. I agree that I hope NBC does right by the Paralympic Games. I can’t wait to watch!
We have been watching the Olympics on Peacock, too. I especially like being able to look for stuff to watch by sport. (Words I never thought I would say!)
I am hoping that they do a comparable job with the Paralympics.