What I have noticed in the US is the tendency for medical professionals to work in silos. I have/had relatives here who are prescribed a huge amount of medications with, it seems, little thought of contraindications. Don't get me wrong, European medicine is not perfect either, but they are not as prescription-happy. I understand that specialists are reluctant to trespass on each other's territory and in my more cynical moments, I think it also gives them a get out, a type of distributed responsibility. Yet it seems to me (and you case looks like an exemplar of this point), that this is precisely where there should be a multi-disciplinary interface. This would not only benefit you, but their own professional development. I find it bizarre (as a curious engineer) that many of the medical professionals I have met in various situations, often tend to lack an interest in the wider context of a person's medical condition. In part that is about keeping a professional distance and staying sane but there is a balance to be struck. I hesitate to make a suggestion, but would it be possible for you to somehow float the idea that they have some kind of multi-disciplined virtual conference on your case? I dare say insurance would not pay for it but perhaps there are other incentives, such as publication opportunities that you could emphasise. You could point out that in the future this type of approach is inevitable and you could perhaps ask whether they would like to be remembered as a pioneer or a nay-sayer. To be frank I think this disconnected approach should not be simply accepted.
This is what I'm always complaining about, Michael. None of these specialists talk to each other, just examine their designated 5mm part of me from a distance, divorced from the picture of the whole. Sigh. America gets so many things wrong. Luckily I have a tool kit that lies in deeper, unbroken traditions, like herbs and acupuncture and such, with practitioners who work more holistically. I'm 100% sure the medical model isn't going to get me there, to the place of real and lasting health. They do disease care AT BEST, and clearly, not even that sometimes. Thanks for reading and sending such a thoughtful response.
I do hope you don't give up on medical science. You could try writing a letter and putting the various disciplines in copy. I recently had some success helping a little boy in the UK who needed heart surgery by doing just that. I am not at liberty to be specific but the upshot is this; there has to be a way to get focus onto your case, sometimes that involves finding the reputational levers. To a certain extent physicians have always buried their mistakes - just make it clear you are not going quietly.
I don’t know what to say that will encourage you, but your description of the complexity of your situation is itself encouraging to me. And that you can find hope in nature, doing art and being with friends. Thank-you for your writing!
I see a heron quite frequently here where I have moved. It just stands looking for fish or glances up at me while I walk my bike over the bride. I am not sure how to contact you. I am an energy therapist and can offer you a session or three if you want. This came into view while reading when I paid attention. Just send me a message...if you want, ok?
Hi Stella, that autoimmune is no joke. And with medical PTSD on the side, for sure.
We've had to step out of our geography (rural Pa) at times, managing my wife's lupus journey. Rheumatology, pulmonary and those few other -ologies; we feel ya. We've landed in Baltimore for some of that specialized care.
There is as much teaching going back to your docs too, educating them on--yes, this is what the body's doing now. You need a listening doc, for sure.
We have a consult tomorrow with a neurosurgeon for spine and osteo issues. Is no fun.
God seems to bring people, who have their gifts of care, sometimes in that moment.
Been watching these videos about NDE's (near death experiences) on Substack.
They're fascinating about these spiritual journeys. I don't understand pain but know it does tend to weave people together in the process. I know you're clearing paths for others to walk. Appreciate you guys.
ps: ginger beer is helpful for your belly! especially the Jamaican-take care!
Thank you, Ron. I'm sorry your wife is having to navigate such a complicated health issue. She's lucky to have your support. Thanks for reading, as always.
Thank you for pouring out your soul; this, too, is healing for all and part of you alchemizing pain into love and hope, in some way for all of us and not only for yourself. But may it be especially for yourself. Peace.
What I have noticed in the US is the tendency for medical professionals to work in silos. I have/had relatives here who are prescribed a huge amount of medications with, it seems, little thought of contraindications. Don't get me wrong, European medicine is not perfect either, but they are not as prescription-happy. I understand that specialists are reluctant to trespass on each other's territory and in my more cynical moments, I think it also gives them a get out, a type of distributed responsibility. Yet it seems to me (and you case looks like an exemplar of this point), that this is precisely where there should be a multi-disciplinary interface. This would not only benefit you, but their own professional development. I find it bizarre (as a curious engineer) that many of the medical professionals I have met in various situations, often tend to lack an interest in the wider context of a person's medical condition. In part that is about keeping a professional distance and staying sane but there is a balance to be struck. I hesitate to make a suggestion, but would it be possible for you to somehow float the idea that they have some kind of multi-disciplined virtual conference on your case? I dare say insurance would not pay for it but perhaps there are other incentives, such as publication opportunities that you could emphasise. You could point out that in the future this type of approach is inevitable and you could perhaps ask whether they would like to be remembered as a pioneer or a nay-sayer. To be frank I think this disconnected approach should not be simply accepted.
This is what I'm always complaining about, Michael. None of these specialists talk to each other, just examine their designated 5mm part of me from a distance, divorced from the picture of the whole. Sigh. America gets so many things wrong. Luckily I have a tool kit that lies in deeper, unbroken traditions, like herbs and acupuncture and such, with practitioners who work more holistically. I'm 100% sure the medical model isn't going to get me there, to the place of real and lasting health. They do disease care AT BEST, and clearly, not even that sometimes. Thanks for reading and sending such a thoughtful response.
I do hope you don't give up on medical science. You could try writing a letter and putting the various disciplines in copy. I recently had some success helping a little boy in the UK who needed heart surgery by doing just that. I am not at liberty to be specific but the upshot is this; there has to be a way to get focus onto your case, sometimes that involves finding the reputational levers. To a certain extent physicians have always buried their mistakes - just make it clear you are not going quietly.
I don’t know what to say that will encourage you, but your description of the complexity of your situation is itself encouraging to me. And that you can find hope in nature, doing art and being with friends. Thank-you for your writing!
Thank you, Glen.
I see a heron quite frequently here where I have moved. It just stands looking for fish or glances up at me while I walk my bike over the bride. I am not sure how to contact you. I am an energy therapist and can offer you a session or three if you want. This came into view while reading when I paid attention. Just send me a message...if you want, ok?
Thank you, Kelly! That's so kind of you. I feel the good vibes pouring through the loving gesture of this message.
Thanks for sharing your story. Comments are not easy, but my best wishes are with you.
Hi Stella, that autoimmune is no joke. And with medical PTSD on the side, for sure.
We've had to step out of our geography (rural Pa) at times, managing my wife's lupus journey. Rheumatology, pulmonary and those few other -ologies; we feel ya. We've landed in Baltimore for some of that specialized care.
There is as much teaching going back to your docs too, educating them on--yes, this is what the body's doing now. You need a listening doc, for sure.
We have a consult tomorrow with a neurosurgeon for spine and osteo issues. Is no fun.
God seems to bring people, who have their gifts of care, sometimes in that moment.
Been watching these videos about NDE's (near death experiences) on Substack.
https://www.youtube.com/@cominghomechannel/videos
They're fascinating about these spiritual journeys. I don't understand pain but know it does tend to weave people together in the process. I know you're clearing paths for others to walk. Appreciate you guys.
ps: ginger beer is helpful for your belly! especially the Jamaican-take care!
Thank you, Ron. I'm sorry your wife is having to navigate such a complicated health issue. She's lucky to have your support. Thanks for reading, as always.
Thank you for pouring out your soul; this, too, is healing for all and part of you alchemizing pain into love and hope, in some way for all of us and not only for yourself. But may it be especially for yourself. Peace.
Thanks Robert. Yes, that's so true- it's cathartic to write it all down, and lets off some steam to rant about it. Thank you for your kindness.