My dysautonomia neurologist told me people with my condition are often euthanized in Canada. WeтАЩre very expensive. And our level of disability means depression is a normal response. ItтАЩs a different life. One worth living.
I really appreciate you saying that. This is a high pain day. Kindness of all kinds is appreciated.
Suffering of the long term and probably permanent variety has taught me so many lessons IтАЩm grateful for. IтАЩm more empathetic and kinder. IтАЩm more resilient than I thought possible. I see the little miracles. I find a reason for gratitude in everything. I donтАЩt anything for granted. My life is poignant and precious.
I do feel bad about being very expensive to treat. But I found a way to keep working. I contribute as much as I can. Today I have much work to do. Maybe there will be time for whining tomorrow. ЁЯШЙ
Emily, you are a true hero, in my book! ЁЯТЯЁЯМ╖ЁЯЩП
I know from personal experience what a challenge chronic (long-term) illness and disability can be. Your capacity for gratitude and grit in the face life's daily challenges is nothing less than exemplary.
Thank you for speaking out! Your inspiration is invaluable . . . .
Thank you very much. I swear I wasnтАЩt fishing for compliments. I just wanted to mention euthanasia, even when things suck, is extreme. Life is so precious.
The biggest lessons IтАЩve learned are so simple. I used to be a highly capable knowledge worker. IтАЩm still a knowledge worker, but less. Much. My brain isnтАЩt always reliable. My pain and fatigue levels are unpredictable. As an employee IтАЩm a bad bet. ItтАЩs why I work for myself. Flexibility is my greatest need.
But - big but - when my identity was shredded and unrecoverable I discovered something important. ThereтАЩs exactly nothing wrong with my ability to love, to worship, to demonstrate compassion. My heart (the emotional part, anyway) is, if anything, enhanced. Turns out thatтАЩs my actual superpower.
100% ~ This is actually the key, and I'm so glad you articulated it, Emily!
> "When my identity was shredded and unrecoverable, I discovered something important" . . . .
Yes! We are so much more than we imagine ourselves to be . . . . and, in the experience of unrelenting suffering, you found the golden nugget:
> "ThereтАЩs exactly nothing wrong with my ability to love, to worship, to demonstrate compassion. My heart (the emotional part, anyway) is, if anything, enhanced. Turns out thatтАЩs my actual superpower."
Beautifully said, Emily. Thank you again for sharing your wisdom, compassion and insight.
In fact, may I quote you, Emily? I maintain an online library that includes resources related to neuroplasticity and "invisible" chronic illness, and I'd *love* for others to benefit from your wisdom and experience, if you are willing?
If you prefer, I can share your comments anonymously ~ without your name or the link to your comments here in this discussion, or with your initials only.
Absolutely you can quote me if you think itтАЩs helpful. Anonymity not required. Being me is just fine.
I imagine as a person who writes and speaks for a living I could be more eloquent if I tried harder. Or wasnтАЩt working on a project while messing around on Substack. (Not now. At 4 am this is just ADHD taking advantage of some pain induced insomnia.)
Proprioception and I have a difficult relationship. Having been through vestibular rehabilitation therapy twice and knowing the power of a MMOO oral splint and insole orthotics combo for orienting in space, I find neuroplasticity utterly fascinating. I keep meaning to fill that prism glasses Rx тАж ЁЯЩВ
Invisible chronic illness is pretty much my theme. I have, without hyperbole, around 100 Dx codes. The main grouping that beget all the secondary and tertiary bedevilments is hypermobile Ehlers Danlos Syndrome with Mast Cell Activation Syndrome and various dysautonomias related to connective tissue failures (Sjogrens, cardiac weirdness, swallowing issues, airway occlusion, thoracic outlet syndrome). Those three sets of issues - hEDS/MAST/dysautonomia - will someday get grouped under their own (hopefully cool) name. ItтАЩs global, itтАЩs end stage for many failed joints, no major bodily system remains unaffected. We are having fun over here. YouтАЩd be amazed at all I CAN do. I am.
This will be the source of much screwing off. ADHD is so excited! (hEDS and ADHD are dancing partners. Those of us with aura and synesthesia are especially odd. WeтАЩre on the neurodiverse side of fun. Or as my sister put it, тАЬDonтАЩt take LSD. ItтАЩs a waste of good drugs you could otherwise be sharing with someone less fortunate than you.тАЭ Too bad about all the migraines, though. Nothing is free, I suppose.)
Thank you, Metta, for putting together such an extensive body of work. Thank you for your important contribution, both from the medical and spiritual perspectives. (Same thing, I know.)
Have you every heard of DMSO? A Midwestern Doctor here ion Substack has had several articles on it recently and I seem to recall him indicating it helps regulate the sympathetic and parasympathetic nervous system. He does require a paid prescription for many of his posts, but some are free. If you are interested and canтАЩt read the posts, let me know and I could copy some of the relevant portions for you to read and direct message you.
He apparently uses it quite extensively in his practice with very good results for a number of chronic diseases and references the applicable scientific studies. It has been found to be very non-toxic unlike many pharmaceuticals.
I did a 3 day course last weekend (over the weekend, in case of reaction). 1 small tsp in my morning "health beverage" (ACV, barley grass, ginger/turmeric, etc.). I tried to measure 1/2 tsp, but my only metal spoon was 1, and so - 1 small tsp.
It pulled me out of a deep, painful fatigue, and while I still struggle, I'd say it took off the top 25% of my struggle.
When it's systemic, like dysautonomia - internal clear stuff up. Just be kind to yourself - start small. And pulse - try 3 days, then quit - see what you have.
I also am waiting for my first order of oral DMSO order to arrive today. I don't know if we're allowed to share product links in the forum, but if you do a search for "Restorer 3" on the "Native Remedies" site, you can learn more.
Also, if tremor is an issue, oral ionic magnesium is an absolute godsend. I can provide links to some suppliers, if you are interested. Just DM me:
Some days I wonder why I do this. And it is a different life, largely misunderstood (I had dysautonomia after coming off psych drugs, and it's largely resolved - but the "chronic invisible" thing...).
Just because it's different - and just because it's getting harder to interface with that thing I used to call "humanity," is no reason to stop.
I still find connections, places of light and warmth.
But I went out "into it" a lot in the past week. The lights are wrong. The sounds are loud. The screens are everywhere, commanding you what to do, where to go next. The shopping mall has removed all but 2 directories - expecting you to rely on the app to find what you need a huge 300 store mall. (I don't do apps, ever.)
Speaking of apps - it's common to order in restaurant using QR code. Have fun, app people! And today, we had to go searching for "app free street parking". It's getting really hard to interface, and while I used to call it humanity - it's become more like
Family. The people I choose in my life. What was it Carlin said? I've got a front row seat to humanity circling the drain.
My husband is also a massively infrequent flyer in the healthcare system. My kid, unfortunately, is a lot more like me. I didnтАЩt know at the time I carried an autosomal dominant genetic condition. It took me 25 years of suffering and achieving end stage disease conditions before I finally met someone who knew what it was. Breaks my heart. At least my son wonтАЩt have to spend decades in pain and misery before someone takes him seriously.
Most of my specialists, including my straight up fabulous and really hard working dysautonomia neurologist are cash only. Government care wonтАЩt touch us. Private insurance canтАЩt find a box to fit us in. That said my private insurance has paid $275k on me in 262 claims this year so far. They arenтАЩt aware of dozens of others or the $30k out of pocket IтАЩve paid.
The Honduran dysautonomia neurologist is married to a delightful woman with my same condition. When he told me about Canada, he looked like he would cry - again. HeтАЩd obviously cried about it before. I understand why the Canadian contingent give up. I have a strong family, unbreakable faith and a stubborn streak a mile wide. Still, despair and I are companions in the dark night. ItтАЩs a tough ride. But itтАЩs also full of wonder and grace.
I work to pay for treatment. I praise God he gave me the resources to run a boutique consulting company with clients that love me as is. I will move mountains for them, even when it has to be done one teaspoon at a time.
PS I just painted DMSO gel on my husbandтАЩs plantar fasciitis. ЁЯЩВ
Emily, your dysautonomia neurologist sounds like a fun doc. I hope they severely disapprove of the Canadian situation, which is literally Satanic IMHO.
Always remember that, while the doctor is helping you (if they are a good doctor) by treating you, you are helping them by allowing them to treat you. after all, without patients, they would have no work to do.
I've been paying government health insurance for 47 years nowтАФfive years in the UK and 42 years in JapanтАФand apart from regular quarterly dental appointments, ad for the past few years an annual blood, urine and cardiac test at my local GPs, I have seldom used the healthcare system at all, and I haven't spent a single night in a hospital bed.
The system has done very well out of me, but I don't resent making those contributions one bit. I count my blessings and consider myself lucky not to have needed any very expensive treatment up until now.
People like you are not a burden on the health insurance system. People like you who have very expensive medical needs are the main reason why we have a health insurance system. If everybody's needs were cheap to cater for, there would be no reason to have health insurance and governments and health insurance organizations would have no excuse for charging high prices.
After reading A Midwestern Doctor, I too am going to start experimenting with DMSO. While I'm not ill, I do have a few problems that I'm hoping might improve with regular consumption. Let's give it a try and see how it goes.
I thought about that, too. I was surprised when the stupidly expensive testing I had done showed a wrecked metabolism (not a surprise) but zero heavy metal or mold toxins in my system. IтАЩm 51 so not as many childhood vaccines. I wish IтАЩd known to skip vaccination for my son. He knows to end that cycle if he has children.
Exactly right! It's all part of the globalist plan being implemented to cull the population in every way possible, including the ever-increasing assaults on animals and nature; of course the countries most complicit such as the U.S. and Canada are already shills and puppets under t he control of their globalist puppet-masters; we are repeatedly being forced to see what genuine EVIL really looks like and how meticulously it is being spread and "normalized" in a world almost totally devoid of moral conscience; "Canadians do not ask" but neither does most of the rest of the nations of the world which are ALL complicit in this sorry mess of an excuse we call civilization or as Erich Fromme once called our species, "existential failures".
Yes, I have read entirely way too much about this. Satan has a grasp - oh how sad
Fidel Castro, Jr?
ЁЯдг
We don't have to guess!
who?
I can't stand that guy
My dysautonomia neurologist told me people with my condition are often euthanized in Canada. WeтАЩre very expensive. And our level of disability means depression is a normal response. ItтАЩs a different life. One worth living.
I am so glad you are here. You are a reminder to the world that life doesn't require the absence of suffering to be worth living.
I really appreciate you saying that. This is a high pain day. Kindness of all kinds is appreciated.
Suffering of the long term and probably permanent variety has taught me so many lessons IтАЩm grateful for. IтАЩm more empathetic and kinder. IтАЩm more resilient than I thought possible. I see the little miracles. I find a reason for gratitude in everything. I donтАЩt anything for granted. My life is poignant and precious.
I do feel bad about being very expensive to treat. But I found a way to keep working. I contribute as much as I can. Today I have much work to do. Maybe there will be time for whining tomorrow. ЁЯШЙ
Emily, you are a true hero, in my book! ЁЯТЯЁЯМ╖ЁЯЩП
I know from personal experience what a challenge chronic (long-term) illness and disability can be. Your capacity for gratitude and grit in the face life's daily challenges is nothing less than exemplary.
Thank you for speaking out! Your inspiration is invaluable . . . .
Thank you very much. I swear I wasnтАЩt fishing for compliments. I just wanted to mention euthanasia, even when things suck, is extreme. Life is so precious.
The biggest lessons IтАЩve learned are so simple. I used to be a highly capable knowledge worker. IтАЩm still a knowledge worker, but less. Much. My brain isnтАЩt always reliable. My pain and fatigue levels are unpredictable. As an employee IтАЩm a bad bet. ItтАЩs why I work for myself. Flexibility is my greatest need.
But - big but - when my identity was shredded and unrecoverable I discovered something important. ThereтАЩs exactly nothing wrong with my ability to love, to worship, to demonstrate compassion. My heart (the emotional part, anyway) is, if anything, enhanced. Turns out thatтАЩs my actual superpower.
Pretty cool, huh?
100% ~ This is actually the key, and I'm so glad you articulated it, Emily!
> "When my identity was shredded and unrecoverable, I discovered something important" . . . .
Yes! We are so much more than we imagine ourselves to be . . . . and, in the experience of unrelenting suffering, you found the golden nugget:
> "ThereтАЩs exactly nothing wrong with my ability to love, to worship, to demonstrate compassion. My heart (the emotional part, anyway) is, if anything, enhanced. Turns out thatтАЩs my actual superpower."
Beautifully said, Emily. Thank you again for sharing your wisdom, compassion and insight.
In fact, may I quote you, Emily? I maintain an online library that includes resources related to neuroplasticity and "invisible" chronic illness, and I'd *love* for others to benefit from your wisdom and experience, if you are willing?
> DiscoveryNow.net
If you prefer, I can share your comments anonymously ~ without your name or the link to your comments here in this discussion, or with your initials only.
Just let me know what you prefer.
Thanks ЁЯТЯ
Metta,
Absolutely you can quote me if you think itтАЩs helpful. Anonymity not required. Being me is just fine.
I imagine as a person who writes and speaks for a living I could be more eloquent if I tried harder. Or wasnтАЩt working on a project while messing around on Substack. (Not now. At 4 am this is just ADHD taking advantage of some pain induced insomnia.)
Proprioception and I have a difficult relationship. Having been through vestibular rehabilitation therapy twice and knowing the power of a MMOO oral splint and insole orthotics combo for orienting in space, I find neuroplasticity utterly fascinating. I keep meaning to fill that prism glasses Rx тАж ЁЯЩВ
Invisible chronic illness is pretty much my theme. I have, without hyperbole, around 100 Dx codes. The main grouping that beget all the secondary and tertiary bedevilments is hypermobile Ehlers Danlos Syndrome with Mast Cell Activation Syndrome and various dysautonomias related to connective tissue failures (Sjogrens, cardiac weirdness, swallowing issues, airway occlusion, thoracic outlet syndrome). Those three sets of issues - hEDS/MAST/dysautonomia - will someday get grouped under their own (hopefully cool) name. ItтАЩs global, itтАЩs end stage for many failed joints, no major bodily system remains unaffected. We are having fun over here. YouтАЩd be amazed at all I CAN do. I am.
тЭдя╕П Em
OMG - cool website!
This will be the source of much screwing off. ADHD is so excited! (hEDS and ADHD are dancing partners. Those of us with aura and synesthesia are especially odd. WeтАЩre on the neurodiverse side of fun. Or as my sister put it, тАЬDonтАЩt take LSD. ItтАЩs a waste of good drugs you could otherwise be sharing with someone less fortunate than you.тАЭ Too bad about all the migraines, though. Nothing is free, I suppose.)
Thank you, Metta, for putting together such an extensive body of work. Thank you for your important contribution, both from the medical and spiritual perspectives. (Same thing, I know.)
PS I hope you are well, happy and blessed.
Good way to look at our lives.
Have you every heard of DMSO? A Midwestern Doctor here ion Substack has had several articles on it recently and I seem to recall him indicating it helps regulate the sympathetic and parasympathetic nervous system. He does require a paid prescription for many of his posts, but some are free. If you are interested and canтАЩt read the posts, let me know and I could copy some of the relevant portions for you to read and direct message you.
He apparently uses it quite extensively in his practice with very good results for a number of chronic diseases and references the applicable scientific studies. It has been found to be very non-toxic unlike many pharmaceuticals.
Thank you. Yes. IтАЩve read all of the DMSO articles on Midwestern DocтАЩs Substack. In fact IтАЩm waiting for my DMSO to dry on my skin right now!
For dysautonomia, I would consider ingestion.
I did a 3 day course last weekend (over the weekend, in case of reaction). 1 small tsp in my morning "health beverage" (ACV, barley grass, ginger/turmeric, etc.). I tried to measure 1/2 tsp, but my only metal spoon was 1, and so - 1 small tsp.
It pulled me out of a deep, painful fatigue, and while I still struggle, I'd say it took off the top 25% of my struggle.
When it's systemic, like dysautonomia - internal clear stuff up. Just be kind to yourself - start small. And pulse - try 3 days, then quit - see what you have.
Good luck, I hope it is as miraculous for you as it is for many people!
I also am waiting for my first order of oral DMSO order to arrive today. I don't know if we're allowed to share product links in the forum, but if you do a search for "Restorer 3" on the "Native Remedies" site, you can learn more.
Also, if tremor is an issue, oral ionic magnesium is an absolute godsend. I can provide links to some suppliers, if you are interested. Just DM me:
> beyondc19@substack.com
Wishing you all the best!
A collection of a wide variety of neural retraining programs, including Phil's Lightning Process, are available here:
> https://bra.in/7qVwmJ
Thank you Emily Terrell.
Some days I wonder why I do this. And it is a different life, largely misunderstood (I had dysautonomia after coming off psych drugs, and it's largely resolved - but the "chronic invisible" thing...).
Just because it's different - and just because it's getting harder to interface with that thing I used to call "humanity," is no reason to stop.
I still find connections, places of light and warmth.
But I went out "into it" a lot in the past week. The lights are wrong. The sounds are loud. The screens are everywhere, commanding you what to do, where to go next. The shopping mall has removed all but 2 directories - expecting you to rely on the app to find what you need a huge 300 store mall. (I don't do apps, ever.)
Speaking of apps - it's common to order in restaurant using QR code. Have fun, app people! And today, we had to go searching for "app free street parking". It's getting really hard to interface, and while I used to call it humanity - it's become more like
Family. The people I choose in my life. What was it Carlin said? I've got a front row seat to humanity circling the drain.
Thank you, Tim.
My husband is also a massively infrequent flyer in the healthcare system. My kid, unfortunately, is a lot more like me. I didnтАЩt know at the time I carried an autosomal dominant genetic condition. It took me 25 years of suffering and achieving end stage disease conditions before I finally met someone who knew what it was. Breaks my heart. At least my son wonтАЩt have to spend decades in pain and misery before someone takes him seriously.
Most of my specialists, including my straight up fabulous and really hard working dysautonomia neurologist are cash only. Government care wonтАЩt touch us. Private insurance canтАЩt find a box to fit us in. That said my private insurance has paid $275k on me in 262 claims this year so far. They arenтАЩt aware of dozens of others or the $30k out of pocket IтАЩve paid.
The Honduran dysautonomia neurologist is married to a delightful woman with my same condition. When he told me about Canada, he looked like he would cry - again. HeтАЩd obviously cried about it before. I understand why the Canadian contingent give up. I have a strong family, unbreakable faith and a stubborn streak a mile wide. Still, despair and I are companions in the dark night. ItтАЩs a tough ride. But itтАЩs also full of wonder and grace.
I work to pay for treatment. I praise God he gave me the resources to run a boutique consulting company with clients that love me as is. I will move mountains for them, even when it has to be done one teaspoon at a time.
PS I just painted DMSO gel on my husbandтАЩs plantar fasciitis. ЁЯЩВ
Emily, your dysautonomia neurologist sounds like a fun doc. I hope they severely disapprove of the Canadian situation, which is literally Satanic IMHO.
Always remember that, while the doctor is helping you (if they are a good doctor) by treating you, you are helping them by allowing them to treat you. after all, without patients, they would have no work to do.
I've been paying government health insurance for 47 years nowтАФfive years in the UK and 42 years in JapanтАФand apart from regular quarterly dental appointments, ad for the past few years an annual blood, urine and cardiac test at my local GPs, I have seldom used the healthcare system at all, and I haven't spent a single night in a hospital bed.
The system has done very well out of me, but I don't resent making those contributions one bit. I count my blessings and consider myself lucky not to have needed any very expensive treatment up until now.
People like you are not a burden on the health insurance system. People like you who have very expensive medical needs are the main reason why we have a health insurance system. If everybody's needs were cheap to cater for, there would be no reason to have health insurance and governments and health insurance organizations would have no excuse for charging high prices.
After reading A Midwestern Doctor, I too am going to start experimenting with DMSO. While I'm not ill, I do have a few problems that I'm hoping might improve with regular consumption. Let's give it a try and see how it goes.
The FDA squished and demonized it - canтАЩt patent a natural substance. No money to be made.
I often wonder
whether this can be helped with detoxтАФ specifically heavy metal
detox? There are
so
many ways heavy metals
can inhabit
the body and brain. Polysorbates go past the blood
brain barrier
and usher toxins with it. Polysorbates are found in nearly
every childhood vaccine.
KNX has been a huge help
to
many.
I thought about that, too. I was surprised when the stupidly expensive testing I had done showed a wrecked metabolism (not a surprise) but zero heavy metal or mold toxins in my system. IтАЩm 51 so not as many childhood vaccines. I wish IтАЩd known to skip vaccination for my son. He knows to end that cycle if he has children.
Exactly right! It's all part of the globalist plan being implemented to cull the population in every way possible, including the ever-increasing assaults on animals and nature; of course the countries most complicit such as the U.S. and Canada are already shills and puppets under t he control of their globalist puppet-masters; we are repeatedly being forced to see what genuine EVIL really looks like and how meticulously it is being spread and "normalized" in a world almost totally devoid of moral conscience; "Canadians do not ask" but neither does most of the rest of the nations of the world which are ALL complicit in this sorry mess of an excuse we call civilization or as Erich Fromme once called our species, "existential failures".
Did you read about the Australian designed/built 3D printed Pod that was used in Switzerland recently?
Australian, because - we're a lot like Canada and headed that way.