So sorry about Baldy's retina and all that it entails! Yikes.
Comment on Raelan Agle's video and the Golden Rule: She's right on about backing away from fear. Fear induces stress which causes inflammatory conditions in the body. Inflammatory conditions cause pain and tissue damage. But here, as in other situations, I think that is useful to understand the root causes.
Similar to what I've mentioned in various posts recently, looking squarely at a stressor and naming it helps. Just that step changes the way that the brain perceives stressors. It takes away the vagueness. It gives you a sense of control and agency.
With so many healthcare resources potentially being limited by the administration, it's critical for all of us to stick together and to educate ourselves about our challenges and the solutions.
I'm working on a piece right now on 'random acts of kindness' which, incidentally DO improve the wellbeing of the actor. Interestingly, just recalling some act that you performed in the past can do the same thing for your brain. Think about all the kindness your heaping on Baldy!
Thanks for all the updates and advocacy, Amy. I sent an action network letter (feel like I have been sending a lot of those lately!) I’m sorry to hear about Baldy’s retina and hope his recovery goes smoothly. Hugs to you!
Oh, Amy. I’m screaming “Uncle” for you. Wishing you all the strength and patience you need to get through these next two weeks. And then a windfall to wipe out all those medical bills. Our healthcare system can suck it. XO
I’ll share in the sorry to hear about these ophthalmology problems for your loved one. We had a close friend go through this, too. Sending well wishes and appreciation for how hard this is, life threatening or not. Also congratulations to the LC community (and that should include all of us) for advocacy, and a win is a win. Great links as usual, too!
I am so grateful that you are here and find / make the time to share Amy. As Mardi aptly states, it's vital that we all stick together; That can't be stressed enough.
Wow - thank you for sharing all that, D4N. I’m horrified by your story and so sorry that has all happened to you. But I’m glad you found your way here. I’m also no stranger to hiding my full identity. There are only two people in the U.S. with my first and last name, and I receive both private long-term disability (known for hiring investigators to spy on beneficiaries) and government disability. Trying to stay low profile so neither of these entities take my Substack as proof that I can work. Truth is, each of these posts takes me several days, an hour at a time max.
I 'get it' Amy. Also, judgement is far above my pay grade. And in my condition; the short spurts of waning energy to engage, etc., etc. trust me that I understand and then some. I will shortly 'disappear' my detailed info, so if you feel any need to save details, please do so asap. Thanks for understanding
Oh man, I’m so sorry to hear he’s going through this! Wishing you the next couple weeks full of many rest breaks and I hope he heals up well! Being face down for that long is just 😱 .
I'm so sorry to read about Part II of Baldy's retinal nightmare — how awful, and the insurance refusals for Part I on top of it all. I hope he recovers smoothly and this becomes a distant memory soon. (And two weeks face down!? Oh my. Podcasts and naps??) Thinking of you both and sending well wishes and hugs for the two weeks ahead. Thank you, as always, for generously sharing these cautionary tales with us. (Thank you for the shoutout on the post about telling your story, too!)
• Face down, ass-up: my heart goes out to Baldy AND you as his caregiver. What a pile of suck.
• I've long reluctantly given the "take a mustache" advice on appointments. Yes, it sucks. But also, when I just totally brain fogged out during an otherwise great and helpful appointment this week, my mustache was able to relay, clarify, and synthesize the parts I've missed.
• As a woman who is in pajamas by 4ishpm daily, I am thrilled to make it anything referred to as The AfterParty! Thank you for the share. :)
Haha, my getting dressed in the morning is putting on a clean set of pajamas 🫢🤭.
My mustache is brilliant generally, but loses the ear-brain connection at any doctor’s appointment, including mine, his own, or at the vet. So that’s no help to me. I’m the “mustache” in our house when it comes to doctors. I definitely endorse doing whatever you have to do to get the info needed, and to be understood and believed. It just sucks that women are treated this way still.
Your piece, "More Tears, More Detachment," offers a poignant exploration of the emotional complexities associated with chronic illness. Your candid reflections on navigating detachment and vulnerability provide valuable insights into the psychological challenges faced by individuals dealing with long-term health conditions. Your narrative fosters empathy and understanding, contributing meaningfully to the broader conversation on chronic illness and mental health.
Amy,
So sorry about Baldy's retina and all that it entails! Yikes.
Comment on Raelan Agle's video and the Golden Rule: She's right on about backing away from fear. Fear induces stress which causes inflammatory conditions in the body. Inflammatory conditions cause pain and tissue damage. But here, as in other situations, I think that is useful to understand the root causes.
Similar to what I've mentioned in various posts recently, looking squarely at a stressor and naming it helps. Just that step changes the way that the brain perceives stressors. It takes away the vagueness. It gives you a sense of control and agency.
With so many healthcare resources potentially being limited by the administration, it's critical for all of us to stick together and to educate ourselves about our challenges and the solutions.
I'm working on a piece right now on 'random acts of kindness' which, incidentally DO improve the wellbeing of the actor. Interestingly, just recalling some act that you performed in the past can do the same thing for your brain. Think about all the kindness your heaping on Baldy!
All great points as usual, Mardi! Our brains are so powerful, but they will listen to what we tell them. That can go both ways, of course.
I love that you bring us such good stuff!!! LOL.
And I do appreciate your candor.
Keep it up.
Brava Mardi !
Thanks for all the updates and advocacy, Amy. I sent an action network letter (feel like I have been sending a lot of those lately!) I’m sorry to hear about Baldy’s retina and hope his recovery goes smoothly. Hugs to you!
I know! I sometimes wonder if the aides in my reps’ offices are like, “oh look - another letter from HER.” 🙄
Two whole weeks!? I don't know how I'd survive that.
It’s rough. His neck and back are hurting a lot.
Oh, Amy. I’m screaming “Uncle” for you. Wishing you all the strength and patience you need to get through these next two weeks. And then a windfall to wipe out all those medical bills. Our healthcare system can suck it. XO
A windfall would be so helpful right now!! Thank you 🙏🏻😁
Wishing you both the best for these challenging few weeks to come!
Thank you!!
I’ll share in the sorry to hear about these ophthalmology problems for your loved one. We had a close friend go through this, too. Sending well wishes and appreciation for how hard this is, life threatening or not. Also congratulations to the LC community (and that should include all of us) for advocacy, and a win is a win. Great links as usual, too!
Thanks so much for reading and commenting, doc! You’re absolutely right- it’s a win for us all.
I am so grateful that you are here and find / make the time to share Amy. As Mardi aptly states, it's vital that we all stick together; That can't be stressed enough.
Thank you for reading and for this lovely comment! I very much agree 🫶🏻
Wow - thank you for sharing all that, D4N. I’m horrified by your story and so sorry that has all happened to you. But I’m glad you found your way here. I’m also no stranger to hiding my full identity. There are only two people in the U.S. with my first and last name, and I receive both private long-term disability (known for hiring investigators to spy on beneficiaries) and government disability. Trying to stay low profile so neither of these entities take my Substack as proof that I can work. Truth is, each of these posts takes me several days, an hour at a time max.
I 'get it' Amy. Also, judgement is far above my pay grade. And in my condition; the short spurts of waning energy to engage, etc., etc. trust me that I understand and then some. I will shortly 'disappear' my detailed info, so if you feel any need to save details, please do so asap. Thanks for understanding
Oh man, I’m so sorry to hear he’s going through this! Wishing you the next couple weeks full of many rest breaks and I hope he heals up well! Being face down for that long is just 😱 .
Thank you! He’s really struggling, but every day we figure out a new hack to give his neck some relief.
Thanks goodness for hacks!
I'm so sorry to read about Part II of Baldy's retinal nightmare — how awful, and the insurance refusals for Part I on top of it all. I hope he recovers smoothly and this becomes a distant memory soon. (And two weeks face down!? Oh my. Podcasts and naps??) Thinking of you both and sending well wishes and hugs for the two weeks ahead. Thank you, as always, for generously sharing these cautionary tales with us. (Thank you for the shoutout on the post about telling your story, too!)
Thanks Brianne! We are making it work but I feel bad for him - his neck really hurts 😣. He’s been reading and watching movies on his phone and iPad.
A few things:
• Face down, ass-up: my heart goes out to Baldy AND you as his caregiver. What a pile of suck.
• I've long reluctantly given the "take a mustache" advice on appointments. Yes, it sucks. But also, when I just totally brain fogged out during an otherwise great and helpful appointment this week, my mustache was able to relay, clarify, and synthesize the parts I've missed.
• As a woman who is in pajamas by 4ishpm daily, I am thrilled to make it anything referred to as The AfterParty! Thank you for the share. :)
Haha, my getting dressed in the morning is putting on a clean set of pajamas 🫢🤭.
My mustache is brilliant generally, but loses the ear-brain connection at any doctor’s appointment, including mine, his own, or at the vet. So that’s no help to me. I’m the “mustache” in our house when it comes to doctors. I definitely endorse doing whatever you have to do to get the info needed, and to be understood and believed. It just sucks that women are treated this way still.
Your piece, "More Tears, More Detachment," offers a poignant exploration of the emotional complexities associated with chronic illness. Your candid reflections on navigating detachment and vulnerability provide valuable insights into the psychological challenges faced by individuals dealing with long-term health conditions. Your narrative fosters empathy and understanding, contributing meaningfully to the broader conversation on chronic illness and mental health.