Such a moving article! Thanks very much for sharing this important story. Navigating and managing the unpredictableness of MCAS must be exhausting. Over the years, through my own experiences and those of family and friends, I’ve learned just how intricate and delicate the human body is. I’m reminded, once again, that there are so many dedicated medical professionals who are hell-bent on understanding physiology and improving our lives. Sadly, there’s the other side of that equation where the stress of our world (especially for intuitives) and pollution certainly impact our health. I’m glad your article is shedding light on MCAS for others...
Thank you for your kind response Joe. You’re right — it is exhausting, and your words about the intricacy of the human body resonate with me. It's astonishing how finely balanced it all is, and how easily that balance tips. I’m so grateful for those clinicians and researchers who are working to understand conditions like this more fully, and especially the impact of the wider stresses and pollutants we are all navigating. In many ways, MCAS has simply forced me to confront more directly what touches all of us.
As you know, mast cell issues are a big part of my interstitial cystitis. Reading this makes me wonder if living with this disease since childhood is just another part of what has made me who I am. So many people seem to struggle with chronic illness. I have to wonder if all the pollution in our modern world has caused the dysfunction, or if it is because we know so much more about the body and people who would have just been considered “frail” back in the day now have labels for what does not function properly in their bodies. Correlation does not equal causation.
Be careful with yourself. We need you as healthy as possible. Your posting schedule while on holiday has been prolific! ❤️
I was just chatting about this with another reader, Lisa Joy. It is not lost on me that I have met so many insightful, intelligent women here — yourself included — who are highly attuned to what’s taking place, and who also manage chronic illness. The pollution of our planet is undoubtedly a contributing factor, but I suspect it goes far beyond the physical. So many seem to have trauma in our backgrounds — emotional ‘pollution’, if you will. I suspect we need to heal from that, and help others heal too, so that cycle is no longer perpetuated.
Yes, it hasn’t been a ‘break’ in the traditional sense of a vacation — heat, insect bites and the high alert of manoeuvring travel hubs left me on high alert. But I allowed myself a break from the noise of Substack, and retreated to my safe space of flow, and writing — it’s the closest I get to a restorative exerience. 😊
I've noticed that some people are starting to own diseases. "My" interstial cystitis, for example. I wonder about the mindset behind this phrasing. Why would anyone wish to own a disease? I suffer Long Covid. But I would never want to own it. There's a mind body connection, and I worry that owning a disease makes it worse.
I hear your concern Aleithia, but I think it’s worth holding some nuance here. For many, saying "my" is simply the clearest way to convey that a condition is part of their own lived experience — not a claim of ownership, but a way of enabling others to see they are speaking/writing from personal experience. At the same time, I agree with you about the importance of language in shaping how we relate to illness. That’s why I don't describe myself as "suffering" from MCAS, but rather as living with it — because our words can either entrench helplessness or remind us of our own agency.
An excellent improvement. I think I'll say, "have....," because "living with" in my mind, implies eternity, and I don't want to marry a disease condition. But it may mean something else, to you. Lisa Joy, I hope you forgive me.
I've noticed that thoughtful writing leads to thoughtful comments. I'm impressed by reader comments. especially in this issue. Lori, your newsletter seems refreshingly free of bots & trolls. They may happen, at some point, but your gifted writing leads away from them.
That means a great deal to me Aleithia, thank you. I’ve been moved by the thoughtfulness readers bring here — it feels like a real conversation rather than the noise so common elsewhere. I know the internet isn’t free of bots and trolls, but I’m grateful this space has held steady so far. I think you’re right that the tone we each bring shapes what follows.
Thank you so much Amanda. Your link is very helpful, as I, too, suffer Long Covid. A portion of a world wide financial fraud scheme on my good name, expanded into the healthcare system, such that healthcare pros denied me vaccinations during the time I was eligible to get them, and they had first come out. See --
This was such a helpful and hopeful post. I have mild MCAS and dislike it so am sorry you live with even more. I appreciate your description of MCAS so others learn, your summary of its effects and your learned strategies, and how those can be strengths/superpowers we use under this regime. Your plan to separate and specialize the two sites is excellent. Thank you for all you are doing. We will out it to good use. 🙏💪🤜🤛
I’m glad this felt helpful to you Kristi, but sorry you know MCAS first-hand, even in a milder form. Living with it in any measure is wearying. Thank you for your encouragement about the two sites — it steadies me to know the separation makes sense to you too. My hope is exactly what you’ve named: that these threads of clarity and grounding can be put to good use together. 🙏🏼 💗
Thank you for sharing this Amanda — I’m so sorry you’re living with long covid. The fatigue, the joint and muscle aches, the brain fog — those are all symptoms I experienced for many years before I understood the mast cell side of what was happening in my body. Only then could I begin to work at calming that response and finding steadier ground. So I know how disorienting and draining it is to endure those symptoms.
I pray you, too, will find pathways that help you navigate this Amanda, and some relief to make the road lighter for you.
Congratulations on the new launch of Presidential Power Watch!
You’re right that you have many superpowers, especially: “A mind that is both highly analytical and deeply intuitive. “
What a great line for everything from MCAS and the state of the world: “If clarity is all we have, the picture may feel overwhelming — like watching the floor drop away in slow motion.”
Living in California and seeing how Gavin and Karen have treated the fires and harmed the homeless in much the same ways Trump has, I fear they are just two “opponents” in name only for our tribalistic Roman Colosseum gladiator WWE fights of sport. This is all to keep us distracted, entertained, and willing to believe there is a savior beyond ourselves that we must cheer for, support, and vote for.
However, I am inclined to cite with Noam Chomsky on this and focus on the propaganda of global government. I do not think there are any heroes in power because in the end they both have the same goal of changing the landscape for the Olympics and probably 15 minute cities with greater surveillance capitalism paving the way for social credit scoring. “the creation of the Olympic Task Force — an order that not only centralises Olympic logistics, but also widens surveillance powers and extends security control through the 2028 election season. It’s a development the mainstream media has largely overlooked, and given the unfolding battle between Trump and Newsom, it carries real weight.”
Perhaps nonviolent Anarcho-Syndicalism is our only escape.
PS: I can’t recall if I already shared with you that my daughter and I also have Mast cell. If ever I can provide resources or support, please don’t hesitate to reach out; although, with how diligent and educated you are I’m sure you will have as much to teach me, if not more. I’m sorry for the challenges, you painted the picture well.
Lastly, I’m so please to see the video you added of Chenoweth. I quote them in my freedom book. I think our strongest resistance at this time is not in protests but in noncooperation. I will be subscribing to your new substack as well.
Your words mean a great deal to me, as always Sage. Thank you for walking alongside this work with such care and insight. I share your concern that the battle lines between figures like Trump and Newsom can at times feel more like spectacle than substance, while the deeper structures of power keep tightening in ways too many overlook. Naming the Olympic Task Force as part of that long arc of surveillance is exactly why I felt it needed a closer look.
I am in complete agreement with you — noncooperation feels less like one option among many, and more like the path we must take if we are to resist effectively. Chenoweth’s research shows us the power it can hold, and Chomsky has long reminded us that propaganda thrives when people accept the stage-managed contest as all there is. Quiet, organised refusal may be the strongest form of resistance open to us now.
On a more personal note, I hadn’t realised that you and your daughter are navigating mast cell disorders as well. I’m sorry you both carry that burden. It is relentless, and it reshapes life in ways most people never see. Your offer of support is depply touching, thank you, and I hope the exchange can run both ways: that we might each learn from what the other has discovered along the way.
I’m truly grateful for your presence here Sage — for the steadiness of your reflections, and for the solidarity they carry. 🙏🏼💗
Sage — I’d highly recommend you and your daughter read "Toxic: Heal Your Body from Mold Toxicity, Lyme Disease, Multiple Chemical Sensitivities, and Chronic Environmental Illness" by Neil Nathan, MD. It opened important doors of understanding for me, and it may be a helpful guide for you both as well.
I had no idea about this illness until I read your article. You really opened my eyes to how complex and life-altering MCAS can be. It’s incredible how something most of us never even think about,mast cells can create such widespread symptoms when they go awry. I imagine so many people are living with this without understanding what’s happening to them, and your work helps bring that hidden struggle into the light. Thank you for writing about it in such a clear, compassionate way,it gave me a whole new awareness and appreciation for what people with MCAS are navigating every day."
Thank you so much Tom — it means a great deal to know this has helped bring the reality of MCAS into clearer view. You’re right, it is life-altering, and most people live with it without understanding what’s happening to them — as I did for the best part of my life. For so many, it is profoundly distressing.
At the same time, I should probably add that my experience may not be typical. Because I’ve been navigating it for so long, the effects have accumulated in ways that many with a more recent onset may not encounter. And for me, past traumas — especially during my years in Zimbabwe — have fed into the condition, adding another layer to it.
I’m really grateful you took the time to share your reflections Tom. Raising awareness matters, and your words remind me why writing about it is worthwhile.
I agree wholeheartedly. This article really addresses major stuff, and I can relate, although the circumstances are not identical. But there is enough similarity, that this article resonated, and enlightened.
I’m glad this resonated with you Aleithia, even if the circumstances aren’t identical. Often it’s in those points of similarity that something opens up — a reminder that our experiences, though different, can still speak to one another. Thank you for letting me know it struck a chord.
An excellent improvement. I think I'll say, "have....," because "living with" in my mind, implies eternity, and I don't want to marry a disease condition. But it may mean something else, to you. Lisa Joy, I hope you forgive me.
Such a moving article! Thanks very much for sharing this important story. Navigating and managing the unpredictableness of MCAS must be exhausting. Over the years, through my own experiences and those of family and friends, I’ve learned just how intricate and delicate the human body is. I’m reminded, once again, that there are so many dedicated medical professionals who are hell-bent on understanding physiology and improving our lives. Sadly, there’s the other side of that equation where the stress of our world (especially for intuitives) and pollution certainly impact our health. I’m glad your article is shedding light on MCAS for others...
Thank you for your kind response Joe. You’re right — it is exhausting, and your words about the intricacy of the human body resonate with me. It's astonishing how finely balanced it all is, and how easily that balance tips. I’m so grateful for those clinicians and researchers who are working to understand conditions like this more fully, and especially the impact of the wider stresses and pollutants we are all navigating. In many ways, MCAS has simply forced me to confront more directly what touches all of us.
Thank you for your clarity and insight!
You're welcome Maureen — thank you for your kind words.
As you know, mast cell issues are a big part of my interstitial cystitis. Reading this makes me wonder if living with this disease since childhood is just another part of what has made me who I am. So many people seem to struggle with chronic illness. I have to wonder if all the pollution in our modern world has caused the dysfunction, or if it is because we know so much more about the body and people who would have just been considered “frail” back in the day now have labels for what does not function properly in their bodies. Correlation does not equal causation.
Be careful with yourself. We need you as healthy as possible. Your posting schedule while on holiday has been prolific! ❤️
I was just chatting about this with another reader, Lisa Joy. It is not lost on me that I have met so many insightful, intelligent women here — yourself included — who are highly attuned to what’s taking place, and who also manage chronic illness. The pollution of our planet is undoubtedly a contributing factor, but I suspect it goes far beyond the physical. So many seem to have trauma in our backgrounds — emotional ‘pollution’, if you will. I suspect we need to heal from that, and help others heal too, so that cycle is no longer perpetuated.
Yes, it hasn’t been a ‘break’ in the traditional sense of a vacation — heat, insect bites and the high alert of manoeuvring travel hubs left me on high alert. But I allowed myself a break from the noise of Substack, and retreated to my safe space of flow, and writing — it’s the closest I get to a restorative exerience. 😊
I have hoped for restoration and peace for you, and trust that you know yourself best. ❤️
I've noticed that some people are starting to own diseases. "My" interstial cystitis, for example. I wonder about the mindset behind this phrasing. Why would anyone wish to own a disease? I suffer Long Covid. But I would never want to own it. There's a mind body connection, and I worry that owning a disease makes it worse.
I hear your concern Aleithia, but I think it’s worth holding some nuance here. For many, saying "my" is simply the clearest way to convey that a condition is part of their own lived experience — not a claim of ownership, but a way of enabling others to see they are speaking/writing from personal experience. At the same time, I agree with you about the importance of language in shaping how we relate to illness. That’s why I don't describe myself as "suffering" from MCAS, but rather as living with it — because our words can either entrench helplessness or remind us of our own agency.
An excellent improvement. I think I'll say, "have....," because "living with" in my mind, implies eternity, and I don't want to marry a disease condition. But it may mean something else, to you. Lisa Joy, I hope you forgive me.
I've noticed that thoughtful writing leads to thoughtful comments. I'm impressed by reader comments. especially in this issue. Lori, your newsletter seems refreshingly free of bots & trolls. They may happen, at some point, but your gifted writing leads away from them.
That means a great deal to me Aleithia, thank you. I’ve been moved by the thoughtfulness readers bring here — it feels like a real conversation rather than the noise so common elsewhere. I know the internet isn’t free of bots and trolls, but I’m grateful this space has held steady so far. I think you’re right that the tone we each bring shapes what follows.
Thank you so much Amanda. Your link is very helpful, as I, too, suffer Long Covid. A portion of a world wide financial fraud scheme on my good name, expanded into the healthcare system, such that healthcare pros denied me vaccinations during the time I was eligible to get them, and they had first come out. See --
Covid Folder.
https://drive.google.com/drive/folders/1xmdYOP-F4Thf5jcOf4RcsZ76jWmx1sH6?usp=sharing
This was supposed to be a reply to Amanda. Substack seems to have instead, set it as a stand alone comment. Weird.
Phenomenal post. Thank you.
I'm so glad it landed for you Karen, thank you for your kind words.
This was such a helpful and hopeful post. I have mild MCAS and dislike it so am sorry you live with even more. I appreciate your description of MCAS so others learn, your summary of its effects and your learned strategies, and how those can be strengths/superpowers we use under this regime. Your plan to separate and specialize the two sites is excellent. Thank you for all you are doing. We will out it to good use. 🙏💪🤜🤛
I’m glad this felt helpful to you Kristi, but sorry you know MCAS first-hand, even in a milder form. Living with it in any measure is wearying. Thank you for your encouragement about the two sites — it steadies me to know the separation makes sense to you too. My hope is exactly what you’ve named: that these threads of clarity and grounding can be put to good use together. 🙏🏼 💗
Thank you for using your voice!!
And equally to you Anthony. 🙏🏼
Thank you for this article. It resonates with me as I have long covid. I just went down a bit of a rabbit hole and found this article which explains a lot for me: https://www.magonlinelibrary.com/doi/full/10.12968/hmed.2022.0123?rfr_dat=cr_pub++0pubmed&url_ver=Z39.88-2003&rfr_id=ori%3Arid%3Acrossref.org
Thank you for sharing this Amanda — I’m so sorry you’re living with long covid. The fatigue, the joint and muscle aches, the brain fog — those are all symptoms I experienced for many years before I understood the mast cell side of what was happening in my body. Only then could I begin to work at calming that response and finding steadier ground. So I know how disorienting and draining it is to endure those symptoms.
I pray you, too, will find pathways that help you navigate this Amanda, and some relief to make the road lighter for you.
Congratulations on the new launch of Presidential Power Watch!
You’re right that you have many superpowers, especially: “A mind that is both highly analytical and deeply intuitive. “
What a great line for everything from MCAS and the state of the world: “If clarity is all we have, the picture may feel overwhelming — like watching the floor drop away in slow motion.”
Living in California and seeing how Gavin and Karen have treated the fires and harmed the homeless in much the same ways Trump has, I fear they are just two “opponents” in name only for our tribalistic Roman Colosseum gladiator WWE fights of sport. This is all to keep us distracted, entertained, and willing to believe there is a savior beyond ourselves that we must cheer for, support, and vote for.
However, I am inclined to cite with Noam Chomsky on this and focus on the propaganda of global government. I do not think there are any heroes in power because in the end they both have the same goal of changing the landscape for the Olympics and probably 15 minute cities with greater surveillance capitalism paving the way for social credit scoring. “the creation of the Olympic Task Force — an order that not only centralises Olympic logistics, but also widens surveillance powers and extends security control through the 2028 election season. It’s a development the mainstream media has largely overlooked, and given the unfolding battle between Trump and Newsom, it carries real weight.”
Perhaps nonviolent Anarcho-Syndicalism is our only escape.
PS: I can’t recall if I already shared with you that my daughter and I also have Mast cell. If ever I can provide resources or support, please don’t hesitate to reach out; although, with how diligent and educated you are I’m sure you will have as much to teach me, if not more. I’m sorry for the challenges, you painted the picture well.
Lastly, I’m so please to see the video you added of Chenoweth. I quote them in my freedom book. I think our strongest resistance at this time is not in protests but in noncooperation. I will be subscribing to your new substack as well.
Your words mean a great deal to me, as always Sage. Thank you for walking alongside this work with such care and insight. I share your concern that the battle lines between figures like Trump and Newsom can at times feel more like spectacle than substance, while the deeper structures of power keep tightening in ways too many overlook. Naming the Olympic Task Force as part of that long arc of surveillance is exactly why I felt it needed a closer look.
I am in complete agreement with you — noncooperation feels less like one option among many, and more like the path we must take if we are to resist effectively. Chenoweth’s research shows us the power it can hold, and Chomsky has long reminded us that propaganda thrives when people accept the stage-managed contest as all there is. Quiet, organised refusal may be the strongest form of resistance open to us now.
On a more personal note, I hadn’t realised that you and your daughter are navigating mast cell disorders as well. I’m sorry you both carry that burden. It is relentless, and it reshapes life in ways most people never see. Your offer of support is depply touching, thank you, and I hope the exchange can run both ways: that we might each learn from what the other has discovered along the way.
I’m truly grateful for your presence here Sage — for the steadiness of your reflections, and for the solidarity they carry. 🙏🏼💗
Sage — I’d highly recommend you and your daughter read "Toxic: Heal Your Body from Mold Toxicity, Lyme Disease, Multiple Chemical Sensitivities, and Chronic Environmental Illness" by Neil Nathan, MD. It opened important doors of understanding for me, and it may be a helpful guide for you both as well.
I had no idea about this illness until I read your article. You really opened my eyes to how complex and life-altering MCAS can be. It’s incredible how something most of us never even think about,mast cells can create such widespread symptoms when they go awry. I imagine so many people are living with this without understanding what’s happening to them, and your work helps bring that hidden struggle into the light. Thank you for writing about it in such a clear, compassionate way,it gave me a whole new awareness and appreciation for what people with MCAS are navigating every day."
Thank you so much Tom — it means a great deal to know this has helped bring the reality of MCAS into clearer view. You’re right, it is life-altering, and most people live with it without understanding what’s happening to them — as I did for the best part of my life. For so many, it is profoundly distressing.
At the same time, I should probably add that my experience may not be typical. Because I’ve been navigating it for so long, the effects have accumulated in ways that many with a more recent onset may not encounter. And for me, past traumas — especially during my years in Zimbabwe — have fed into the condition, adding another layer to it.
I’m really grateful you took the time to share your reflections Tom. Raising awareness matters, and your words remind me why writing about it is worthwhile.
I agree wholeheartedly. This article really addresses major stuff, and I can relate, although the circumstances are not identical. But there is enough similarity, that this article resonated, and enlightened.
I’m glad this resonated with you Aleithia, even if the circumstances aren’t identical. Often it’s in those points of similarity that something opens up — a reminder that our experiences, though different, can still speak to one another. Thank you for letting me know it struck a chord.
An excellent improvement. I think I'll say, "have....," because "living with" in my mind, implies eternity, and I don't want to marry a disease condition. But it may mean something else, to you. Lisa Joy, I hope you forgive me.
This was supposed to be a reply to Lisa Joy and to Lori, concerning language use about diseases. Not sure why it ended up here.