“Medically Futile Care” As Ritual. I Fucking Knew It. And People Are Okay With This?

I’ve been researching so-called “medically futile care” lately, or more accurately, it’s a rabbit hole I fell down while researching nursing and what nurses have to say about witnessing and participating in medically futile care, otherwise known as medicalized torture.  My own mother is a nurse and I know that she, after being a nurse for some 30 years, started to become disillusioned by Western medicine and the horrific procedures and treatments imposed on intractably and/or terminally ill and actively dying patients.  Of course, she didn’t start having a problem with it until after she had reaped the social and material rewards of being a disgusting handmaiden and middle class patriarchal enforcer for her entire adult life including subjecting her own children to medicalized torture: my own brother died from it and earlier this year she brutally criticised me for abandoning Western medicine after 2 years of conventional Crohn’s treatments that were not helping and only making me worse.  With a Western medical nurse as a mother who needs a firing squad (or torturer) amirite?

I have written here before about disillusioned Western medical doctors resisting their evil profession by leaving the field, including leaving via suicide.  Apparently there is currently a movement headed by Western medical doctors themselves to challenge abusive practices in their field including but not limited to hazing and domination rituals in medical school and medical residency; overwork, sleep deprivation and other conditions related to employment in the Western medical field; and cruel standards of care including those implicating medically futile care where doctors feel “forced” to literally torture sick, injured and otherwise vulnerable patients lest they lose their jobs or be sued for medical malpractice.  Doctors are actually feeling sorry for themselves because their jobs as patriarchal enforcers and medical torturers makes them feel bad, and while anyone who has ever worked before knows what it’s like to be coerced for money (and survival) those who literally, physically harm and torture other people in order to maintain their own standards of living will garner no sympathy from me.

The same goes for Western medical nurses who my research indicates suffer greatly from vicarious trauma and professional burnout from “having” to witness torturous medically futile care in their professions.  Examples of such care include flogging corpses which have no reasonable chance of being revived; continuing invasive so-called “life support” for those who are dead to the world and will probably never regain consciousness or if they do will be horrifically and permanently impaired; refusing to let extremely premature or terminally malformed or diseased infants die naturally, and so on.  Get a real fucking job, no matter how low it pays, is my response to all medical professionals who have a problem with physically harming and torturing people…yet continue to do it anyway because some man somewhere tells them they have to lest they lose their jobs if they want to continue to fund their own middle- to upper middle-class lifestyles.  Seriously fuck you a million times you poor, poor self-proclaimed victims of workplace abuse who continue to physically torture vulnerable people for money.  You absolute monsters.

As a chronically ill person suffering from an incurable and progressive disease that is notoriously unresponsive to conventional care, I recognized awhile ago that for me to engage with Western medicine when it has nothing to offer me in terms of pain and symptom relief or a net increase in my quality of life (net meaning overall, or a positive rather than negative score in benefit-minus-risk) would be nothing more or less than an engagement with a patriarchal ritual, and one that as a radical feminist would give me no comfort.  Because I see no objective or subjective value in participating in patriarchal rituals I have declined to use the doctors’ office as a confessional, to confess my sins of being a disabled female under capitalism and patriarchy to a patriarchal authority figure who can do absolutely nothing for me except to witness my confession and absolve me of the emotional burden of being sick in the first place, and medically noncompliant in the second.  That is literally what Western medicine is to me now — a patriarchal ritual — and I reject that on its face as a female who is deliberately denigrated and harmed (not healed) by patriarchy and patriarchal rituals by design.

Well come to find out this business about Western medicine and medically futile care in particular being a patriarchal ritual has been described by other people and wasn’t just something I and other radical feminists have made up in our heads: researchers actually admit it’s true in a medical journal article entitled “Rituals, death and the moral practice of medical futility.”  Of course, they frame the use of ritual in this context as a positive thing.  Here is the abstract of that article:

Medical futility is often defined as providing inappropriate treatments that will not improve disease prognosis, alleviate physiological symptoms, or prolong survival. This understanding of medical futility is problematic because it rests on the final outcomes of procedures that are narrow and medically defined. In this article, Walker’s “expressive-collaborative” model of morality is used to examine how certain critical care interventions that are considered futile actually have broader social functions surrounding death and dying. By examining cardiopulmonary resuscitation and life-sustaining intensive care measures as moral practices, we show how so-called futile interventions offer ritualistic benefit to patients, families, and health care providers, helping to facilitate the process of dying. This work offers a new perspective on the ethical debate concerning medical futility and provides a means to explore how the social value of treatments may be as important in determining futility as medical scientific criteria.

Oh by all means, let’s remove the expectation that medical care provide positive “final outcomes” for the one being subjected to it — the patient.  Because to ignore fail to extol the broader social function of torturing sick and dying people in a medicalized authoritative setting would be problematic, you see.  Do you see what they did there?  They are talking about social engineering and the effects on society at large of flogging corpses, equating zombification/maintaining a state of undead with “life support”, and spitting in the eye of natural law by refusing to allow congenitally unviable infants to not-survive infancy and so on.  And while the abstract does not list or detail the alleged benefits, the writers believe the social engineering effects are positive.  Sure, if the reader is one who benefits from collective trauma and trauma-based mind control among other things.  The rest of us, I suppose, are just expected to adopt the perspective of our oppressors.

These medical researchers aren’t even hiding the fact that most if not all medically futile including end-of-life care is ritualistic and does not benefit the patient.  They assert that it is not intended to and should not be intended to benefit the patient because why waste an opportunity for social engineering and propping up medical (patriarchal) authority by “facilitating the process of dying” as if natural law needs their help?  This is megalomaniacal.

The shit icing on the cake may even be that these researchers used a woman feminist’s ethical framework in order to justify using patriarchal authority as social engineering in cases of intractable illness and injury, including at the end of life.  They rely on Margaret Urban Walker’s Moral Understandings: A Feminist Study in Ethics, published in 1998 which is described here:

The central concept of Walker’s work is the development of the expressive-collaborative model of ethical discourse.  The expressive-collaborative model is a participatory model that engages people of all different kinds in a deliberative process that develops shared morality for a community.  She develops this model as an alternative to the theoretical-juridical model [which model is a top-down authoritative model that assumes a universal moral code applies and does not accept input from the community it asserts moral authority over.]

Of course, assuming Walker is actually a feminist, she is proposing an alternative to patriarchy and providing an entrance for women and feminists into ethical discussions surrounding social policy and practice that disproportionately negatively affect us.

But her work is not used here to challenge patriarchy, quite the opposite.  These prick researchers appear to use Walker’s alternative feminist ethical framework to support the use of medicalized patriarchal torture as ritual and beneficial social engineering…why?  Because men and Western medical doctors should be included in the creation of social policy and practice and to not include them would be unfair because they are part of the communities they serve?  (Have we hit peak liberal feminism yet?)  Because using the bodies of sick and dying people to literally send messages to other people is perfectly fine?  You’ve got to be fucking kidding me, considering that men in general and Western medicine in particular, as a fundamental patriarchal institution, already wrote the whole show including the foreword, the afterword, and the credits — and have used women and women’s bodies as useful objects the whole time.  The world is their stage, the rest of us only players, yet we mustn’t disallow men and patriarchal institutions their voice literal actual physical abuse because not only ethics, but because feminist ethics.  Got it.

Did I mention that I was right about medically futile care being nothing but a patriarchal ritual that can only harm women because that’s what it’s intended to do?  Yep.  I absolutely did mention it and I will again.  I have also discussed how sick women’s bodies are in fact used to send messages to other people, in the case of requiring women to accept harmful and misogynistic Western medical treatment in order to collect disability benefits, the message is comply or literally die.  Of course, I also framed Western medical treatment of untreatable, incurable and progressive disease as medically futile care which for some people is probably controversial but hardly a stretch if you just think about it a little bit.  Goddammit I hate being right all the time.

61 thoughts on ““Medically Futile Care” As Ritual. I Fucking Knew It. And People Are Okay With This?

  1. It really is just a matter of whether people believe that patriarchal social engineering and/or things that harm women are positive or negative. Everyone who actually looks into these things seems to see the same thing. The mainstream may as well just copy radical feminist observations of everything and replace our conclusions with “but that’s a good thing!” and be done with it. None of it’s a secret, it’s just that we are the only ones that think it’s bad.

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  2. I am glad I found your blog today. In 2002 I found out I have Crohn’s. I became an integral part of Northern California’s medical cannabis effort shortly afterwards and began appearing in articles and videos as early as 2004. Perhaps we could correspond.

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  3. Particularly, I see a fb share circulating from time to time about how a study as biased and poorly conducted as any big pharma trial says that some unreasonably high percentage of Crohn’s patients are able to attain cured-like quality of life through mild cannabis use.
    I have taken these articles as an opportunity to soap-box about how having a grown-up conversation about Crohn’s means talking about how bad it really is, but that if I’m speaking with an adult-child who wants to tell me about their newest version of the easter bunny is going to save us all there are times I’m forced to indulge their delusions of me being able to live a normal life because they shared “the good news” about cannabis with me today.

    I was wondering if this sounded like any of the pieces you’ve wrote here? I’d love to have a link to an article like that.

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  4. Thanks for that! I haven’t written anything specific about cannabis not being a cure (I don’t think?) but I have certainly mentioned it in the comments here somewhere. I have gotten about 50% relief from cannabis combined with organic food and supplements. Cannabis on its own did even less although it was an excellent pain reliever. I was also taking extremely high doses to get any relief at all, so I agree with your assessment that “mild” cannabis use is not going to cure us of anything. Straight CBD did absolutely nothing. I completely support your desire to have a grown up (and negative) conversation about Crohn’s because that’s exactly what no one is willing or able to do. Some patients will, on private message boards. But even those are infested with Big Pharma and other trolls who say Crohn’s is easily treated or even curable. Statements like “my medicine is working great, I’ve only had 12 bowel resections in the last 5 years which were minor hiccups in my otherwise successful treatment and life is good!” can only be attributed to trolls can’t they? Actual patients likely know better, including that getting sick enough to need surgery, then planning the surgery, getting it and recovering from it not just once but multiple times in as many years is not a quality life and leaves very little time for anything else. It’s absurd. This blog has only been active for less than a year, so I really recommend reading all the posts if you are interested in the subject matter. It won’t take very long. The archives are in the sidebar.

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  5. I will be reading through the entire blog. There were a few years that writing was a huge part of my coping process, and I’ve been trying to get back in touch with that. It’s been off for me for about five years now, but I feel like our society is in desperate need of an adjustment to the value systems installed in almost everyone so I’m compelled to bring it back.
    Your writing here reminds me a lot of what my own voice used to sound like and I am moved by it.

    I grew up thirty blocks from the California State Capitol Building, I had obvious Crohn’s, and a legal doctor’s recommendation in 2002. It would’ve been my senior year in high school and anyone could tell that my life was already over, so almost anyone who met me was moved to tears back then. That was pretty much all it took back then to become a well know actor in the medical cannabis scene. The compassionate use act had only been law for five years and there would be no official state policy on medical marijuana, then senate bill 420 (not joking) came through in 2004.
    When dispensaries started popping up around the Capitol in 2005 I had already learned compounding pharmacy techniques and had been making capsules for myself since the previous fall. When the shops found out what I was doing they gave me a choice and I’m here writing to you now because of the one I made.

    One of the best moments from those old days was in 2006 walking by the counter and hearing a woman with Crohn’s asking for the capsules I had made. She told me that her gastro had specifically mentioned the ones I had on the shelf there and that was the only reason she had came into the shop. I didn’t introduce myself but I did google her doctor and I’ve always wanted to meet him.
    I maintained strict policies of zero-advertising, zero-packaging, zero-competition and focused entirely on making consistent and affordable remedies. Other Crohn’sers have told me that sounds basically like a dreamworld to them, and I suppose it does when you leave out all the war stories.

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  6. People were moved to tears and gave you opportunities because you were sick? I’ve never experienced such a thing ever. I reached out to NORML twice to offer my services as an activist and an attorney and they told me to write letters to my congressmen like I was a trained monkey and not a seasoned professional with actual skills and experience to offer. And I reached out to my local dispensaries for help earlier this year when I was about to become homeless. Most of them never even called me back, and the others had literally no help and no advice to offer, even though half the reason I was destitute is because I spent my life’s savings on cannabis products in their shops and I was still sick. So yes, what you are describing here does have an air of “dreamlike” fiction to it (this is what male privilege looks like to females maybe. Just frankly unbelievably positive treatment from everyone for no discernable reason). If you decide to use my work or are moved by it, please consider becoming a Patron and supporting me and this project. Thanks for reading. If you decide to write about what Crohn’s is honestly like and how bad it is, I think people will want to read it. The gaslighting around this disease is oppressive. No one believes it could possibly be as bad as it is. Considering it’s progressive it’s actually even worse than that.

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  7. I often wonder whether life would be more or less frustrating if I had been able to make a career or a family for myself before being struck down by this. Going through school and getting to establish a legitimate career would’ve been the ultimate dream come true for me, and I held out for it for many years until I finally had to admit it was never going to happen.

    People being encouraged to drop their life savings in a mitigation dressed up as a cure and the commercialized activism of the modern era is exactly why you won’t find the likes of many disabled people there.
    Around 2015 the attitude shifted quickly into the one you’re describing… Almost overnight, I went from having great conversations with dispensary staff who were twice my age to having to put up with kids looking at their phones while the walked around the stockrooms and I knew it was already over.

    The other side of what I told you about how I got started is that by 2005 I had already been held at gunpoint by the national guard in a real DEA raid. I had been robbed at gunpoint, run out of every place I lived whenever harvest season rolled around, had slept in a construction site on a collective garden to get access to research material and almost died a hundred ways by the time I finally started going to the hospital.
    And the AIDS crisis was still fresh on people’s minds. I was a living reminder of it whether I wanted to be or not.
    Medical Marijuana started off as a way for people to die with dignity during an epidemic that the world may never recognize the likes of ever again, and when I met the guy who wrote the ballot initiative he told me that what I was doing was exactly why he worked so hard to get the law passed:
    Medical marijuana was created to give people the opportunity to make medicine for themselves, like I was. It was never intended to be a ransom-for-relief like it mutated into by the time you needed it.

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  8. That’s interesting about how and when the MMJ scene changed the way it did. Looks like I just missed the good days as I started in 2015. If I was smart maybe I would’ve started earlier, as soon as I got my diagnosis in 2013. It would’ve been a full time job for me to make my own medicine when I first got here because I was too sick and I had no one to help me. And I had some money at the time. So buying product wasn’t a negative thing for me although my expectations were WAY too high and no one ever told me different. I did start making my own suppositories but I didn’t extract my own cannabis oil bc it was too labor intensive and I was afraid of burning my house down. Well actually I did try cooking an infusion (not extracting) twice and I almost did burn the place down and I also wasted $500 worth of plant material on the attempt. I like the idea of MMJ collectives and maybe small communities making their own medicine for their own use for sure (patients as sick as I was/am need help). It’s good to hear someone else criticise what’s happening now actually bc from what I can tell, people are either still spooked by cannabis generally/don’t think it can help at all (that’s not true, it does help a lot) or they think it’s a cure for various things. It may or may not cure some things but it does not seem to be a cure for Crohn’s. And certainly not in the micro/recreational doses people are talking about.

    “People being encouraged to drop their life savings in a mitigation dressed up as a cure and the commercialized activism of the modern era is exactly why you won’t find the likes of many disabled people there.” Yes I agree completely. This has been my experience and I am glad to see someone else say it. Thanks for your comment.

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  9. As far as dosing, I have to take so much that I’m fairly disabled just from the meds. Which is not uncommon for Big Pharma Crohn’s meds either, considering that they give you fucking AIDS, drug induced lupus and diabetes and other horrific stuff. But being disabled from MMJ is unacceptable to most people even tho it’s not going to give anyone opportunistic infections or cancer and the disabilities flowing from that. A micro or recreational dose that did not disable me would leave me disabled from the Crohn’s. So really, my life was indeed over as soon as I got my diagnosis because the treatments for Crohn’s, even MMJ are quite disabling on their own and Crohn’s itself is intolerable. It’s a suicide disease, one of very very few. But people talk about it like it’s nothing and like Big Pharma treatments are a panacea. They aren’t and neither is MMJ.

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  10. Making suppositories is very advanced work. That’s impressive – I have always had the molds for them around but never actually got to it.
    I do a sesame oil/coldwater extract infusion in the toaster oven at 175f for ten hours in a sealed pint jar and I always expect it to blow up in my face during agitation but so far it hasn’t happened.. The second and third time I made cannabutter “on the farm” I blew up the mason jars it was in and I’ve been super careful since then.

    The whole “oil” thing is itself a big part of how things changed. When I first met cannabis farmers in 2004 everyone did all of their extractions with water. 9/11 had only happened a couple years ago and no one wanted to be accused of making bombs. Everyone who did anything with cannabis back then expected to either die or go to jail for it.

    Then Jack Herer started smoking oil with Rick Simpson and everything changed overnight. Now most oil-fans have no idea that higher efficacy can be attained with water extracts – or what the word efficacy means.
    This also means that using poison like denatured alcohol to make “medicine” became commonplace. All of a sudden the same chemical companies that manufacture a lot of the pharma out there were getting paid for the chemicals used to extract pot.

    There were a lot of people throwing different ideas at the wall before dispensaries and oils becoming the standard.
    The garden I did most of my early research at was offering people the chance to grow their plants there for $500 each. When the DEA showed up I was finishing up a batch of butter I had worked all night on. They counted 32,564 plants… 16 million dollars? The guy in charge there would say he had 2000 patients at 3000 bucks each, that’s six million… He had gotten some of my SSI in that lump, but at least I got to figure out how to start crafting remedies there. Most people just got scammed.
    I’m pretty sure the idea of the cannabis utopia has always been a scam to trick most people involved into thinking they’re getting paid enough in lifestyle-dollars while a handful of people clean up at the top.
    That Murder Mountain docu on netflix right now is the floodgates opening up on a lot of eye-opening dialog you’ll be seeing now that this is all finally coming to an end, and after reading through all day I think your blog is right on track with the timing of that trend.

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  11. Sorry, what’s coming to an end exactly? It seems to me that things like this never come to an end, or at least not to a satisfactory resolution for the people who are getting screwed over. Things do tend to change but not for the better for normal people as far as I can tell. If this is any different I would be amazed. So what’s coming to an end in your view? What is the trend exactly except perhaps for disillusioned patients to start pissing into the wind about something that is unlikely to ever change for the better?

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  12. I ran a search for Crohn’s and euthanasia today and that’s how I found your page. I know it’s a suicide disease because I’m pretty sure I’m not going to make it to year-twenty of this.

    Seeing your blog today has been vindicating for me in a lot of ways – not just the cannabis ones.

    I’ve been talking about how unethical it is that the dispensaries are using people as guinea pigs as part of selling as much grass as they could to them, promising cancer cures and anything else you could imagine. A joke started in a movie called How High turned into a predatory marketing practice. I’ve been waiting for any sign that the tide on all that will be rolling back and I see the writing on the wall here – you are exactly the kind of wrong-person-to-piss-off I was hoping-not-hoping for.

    To me this means that we are headed for a more honest discussion about cannabis as the market widens. Now that it’s not required for sales to be marketed as cures there is room for that conversation. There’s a bunch of dead relatives and still-sick cripples who were duped into thinking that pot was somehow going to keep them alive.
    Having a more honest discussion about that is a change for the better.
    People will still be dying and suffering but there has to be an acceptance and recognition of it rather than the current dismissal “pot will make you better” while jerks sip wine.

    There’s also huge changes in the labor violations of the black market. People did disgusting horrible things to stay one step ahead of others in the black market and state accountability change a lot of that. At least a fifth of the dead people I know died in violence related to bad deals and robberies.
    That’s pretty much over.

    Burning the house down for oil extraction? That’s on the way out now too.
    There are a ton of things that are improving.

    It’s all still racist as hell cut-throat capitalism with regulatory bribes the whole way but it’s a hell of a lot better than the shotgun-toting snake oil salesman that screwed people like you over or the ponzy scams that almost got me killed.

    Also I didn’t properly reply to a couple things: CBD not working? We used to call CBD bad-pot. Shops couldn’t sell it. Then more and more people came in wanting the “health benefits” without the side-effects and the shops had a huge new market.

    I also hear you about dosage and being debilitated from medication. I have never driven a car.

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  13. That’s interesting, thank you for the clarification. I don’t see most of your examples applying to actual patients though, not the sickest ones anyway who would be too sick to make their own meds/extracts or do shady/illegal deals on their own anyway. I am probably one of the sickest patients my local dispensaries have ever seen. The way I know that is that if I was any sicker I physically would’ve been unable to go the the dispensaries at all. There have to be people who are less sick than I am that have full time caretakers who run their pot-errands for them. I once had a complete meltdown at a dispensary and more than once I had no idea how I was going to be able to make it there in my car, and once I got there how in the world I was going to get home. I was thrilled to be able to just buy product and take it home and use it easily. And I did improve from where I was, but it’s a moving target since Crohn’s is progressive. As far as I know you are the only Crohn’s patient who has ever commented here. There are other seriously chronically ill people but no one else with Crohn’s. From what I can tell, Crohn’s is really its own thing and is very, very bad compared to most other things. Crohn’s patients who have gotten cancer from their Crohn’s meds say that the Crohn’s and Crohn’s meds are worse than the cancer and cancer treatment. Of course, thanks to Western medicine, now they have both at the same time.

    If I believed that activism worked, I would say that there is plenty of activist material here and from a unique perspective of someone who is very, very ill (but still able to write for now and such as it is). I am no longer an activist myself. I am, however, happy to be a hired gun if there are any writing projects that you think could use my voice or my help. Are people willing to pay for this “conversation” that you think needs to happen? It’s interesting nonetheless. Thank you for your comments. I’m glad you found the euthanasia post. It’s some of my best (and certainly most heartfelt) work.

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  14. That is 100% true. Last year when I saw the GI I started off with “I’ve had a lot of friends with AIDS and cancer, and hanging out with them I was always in the same boat so I learned pretty quick how serious crohn’s is.”
    The GI laughed and said to me point blank “Naw Crohn’s is worse. With AIDS there’s medication for it now, and caner.. Well you’ll get cancer.”

    It surprises me that more Crohn’s people haven’t found this blog. I think that says more about the state of blogs today than it does about the quality of your material.

    There were years for me when I was getting regular blood transfusions, had a fistula under my tailbone, and couldn’t keep a hundred pounds on. a hundred and five pounds is as healthy as I’ve ever been for any length of time, even now I can see my heartbeat through my shirt. My lower back is currently locked up from arthritis and I’ve spent the day trying to figure out my next artificial extension for how to make life worth living a little longer.

    To be worse off than this is when a person loses their voice. What you say over and over about having been dead for six years is something I’ve said too since 2002. When I meet someone dying of cancer that’s the warning I give them: you will be breathing for months after the last time you were alive. Before you know it those good days out of the week will be a good day or two out of the month, and beyond that it will be a few hours a few times and that’s it.

    And that’s reality. Sugar coating things and acting like it’ll all work out someone robs a person of their final chances.

    I do know one author who seems to have used her writing to get somewhere in life, but with the value of the dollar dropping in tandem with the quality of goods it can buy I’m starting to see money as nothing more than another mirage. I’ve been focused on finding value elsewhere in life to make up for my own lack of funding, but this approach obviously comes with its own difficult uncertainties.

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  15. I am not really a consumer anymore. Having lost my apartment in a hurricane and then having to move across the country with one suitcase in order to treat with MMJ I’ve learned once too many times that things are easily lost and replacing them once or 5 times doesn’t mean you won’t lose them again. Really I just need a place to live that isn’t connected to my health or my ability to earn. lol. Just.

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  16. And I actually don’t think that life with Crohn’s is “worth living” but is more of a force of habit combined with lack of options that aren’t completely terrifying. I think if I didn’t have to worry about being homeless with Crohn’s at the same time I would be ok for awhile (as long as I had access to MMJ). Untreated Crohn’s isn’t worth living through at all IMO. I’m sure I have PTSD from the relentless ongoing pain and failed treatment. I would 100 times rather die than experience that again.

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  17. Bahaha… u only Just figured out that money is a figment?? That’s both rich country& Male privilege. I have a post on thekaguya.blog “The Truman show & money system. It covers essence of it nicely.

    I grew up in a country which didn’t have a currency till mid-90s, with 20s Germany inflation, + untrustworthy banks. Womyn + cattle were original money ^ still are in much of world. My naive grandma had a whole house wiped out cos she sold it prior 2hyper inflation
    Printed cash may get taken from female hands anytime with male upper body overpowerment (ie the only reason there even is patriarchy)

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  18. As far as examples that might apply to actual patients, the one thing I’ve heard about recently was a conference at UC Berkeley on MAP. MAP is thought to be the bug moving from sick cattle to people and Crohn’s patients have always assumed that it is what’s making us sick because the symptoms are identical in cattle and people.

    I had a few Crohn’s friends there and they came back talking about how MS, Lupus, Parkinson’s and Arthritis were all caused by the same bug causing Crohn’s. Supposedly there is a curative vaccine in the second stage of its trials.

    Getting a vaccine-cure would be a huge shift in the fight against these conditions, it would also expose an infection responsible for more suffering than plague or HiV unifying a huge group of people who would be experiencing recovery for the first time in their lives.

    I know I’m too far gone for it to make much of a difference for me. I’m guessing you probably feel the same way but from what I’ve read here you’re only about a quarter of the way through how this disease progresses. I’d be happy to link you to a copy of the book I learned to gauge that from – imagine how surprised I was to find out that watching blood pour out of me faster than piss for years was only almost halfway into progression.

    I managed to turn that around for myself for a few years without medical intervention. I was drinking raw colostrum (it’s illegal now) to reset the gut completely, taking desiccated sheep thyroid for the damage from prednisone, using a veterinary-use-only infrared laser to work on a fistulized abscess, taking near-toxic loads of oregano oil to fight the MAP…
    I managed to get up to 118 pounds for almost three months. Then the local sheriff decided to stake out the cabin I was renting until I left the property for the first time in six months.
    Less than a year later I was back to a hundred pounds and getting an emergency transfusion for gradual loss of over 80% blood count. I had less than a quart’s worth of red blood cells and the only reason I didn’t die was that I was only twenty-six.

    And mouse I know that the mere presence of a male appearing on a radfem blog could be considered gaslighting and I apologize for that. I don’t have the spoons to try to prove anything and my only intention here is to have a “grown-up conversation about crohn’s and cannabis.”

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  19. Well I’m certainly not going to tell anyone else how to respond to you or any man but I welcome comments from disaffected Crohn’s patients on this blog, especially ones with cannabis experience. Life experience and intelligence also go a long way with me. I won’t discuss radical feminism with a man but other topics are on the table as long as the convo is good. I think this one is good so it’s fine by me. Thanks for your comments. Kaguyamouse is, of course, completely correct about money.

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  20. I actually don’t feel too far gone for a cure. I’ve been able to keep my weight on for the most part (or put it back on after I lose it) and the organic food makes such a huge difference. I’ve had to give up my raw fermented food and supplements because I couldn’t afford them anymore tho. That was a huge blow. Now that I know acne and nasal stuffiness are autoimmune I recognize how well I was able to get for awhile when I was able to do the fermented food and supplements on top of the MMJ and organic food. My acne and stuffiness disappeared for awhile when I was feeling my best. Now it’s all back along with extreme fatigue. I honestly have to laugh at the thought of a vaccine cure for Crohn’s. Is that for real? Assuming it works, has no side effects and is permanent (all huge assumptions) how much would they charge? And speaking of side effects, how on earth can they propose vaccinating autoimmune patients for anything and expect it to turn out well? IDK. To say I no longer trust Western medicine to get this right would be an understatement. I honestly would love to see Western medicine burned completely to the ground. I think letting people be sick is our best and only option considering the state of the planet. Google “radiation enteritis” and then look at alt news sources regarding the Fukushima nuclear disaster and then put them together. I think that’s what Crohn’s is honestly and it makes sense that cows have it too (the MAP reference). Mitigating the social and financial effects of this hideous disease is way more realistic than thinking about treatment let alone a cure. And that’s something that’s completely within the realm of possibility, if only “they” would let it happen.

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  21. Animal-human connection means nothing specifically as that’s how HIV & Babesiosis spread 2
    .
    I have auto immune dog & another with endlessly recurring breast cancer (both female)
    All it means is that animals get just as sick from poisonous environment & food we feed them. There is also no cure for them

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  22. I think that’s how it works too kaguyamouse. Animals are getting sick just like we are. And just like drinking shit smoothies sourced from autistic babies (shudder) it’s probably a bad idea to consume collostrum, thyroid or any animal product medicinally anymore, regardless of what anyone thinks about it morally (but also including that, as I don’t think it’s possible to get a positive health benefit from tortured animal fluids and probably even moreso if you believe/feel its wrong). I think this planet can no longer support life, is what’s happening.

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  23. There’s a view that Earth will survive but all life shall reset & evolve anew.
    U know Midnight Sun in Twilight Zone? In fact, an eerie amount of that show feels prophetic. Perhaps it was never really about Cold War

    Who am I kidding? ‘They” dont make prophecies – they make plans for destruction
    Nostradamus & those Biblical doomsday stories
    PLANS – I tell ya..

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  24. The linguistic obfuscation is maddening
    Back when dudes were wrapped up in big important Regress: it was MANkind & MAN to mean person
    Now that we’re wallowing in catastrophic effect of MAN’s stupidity}
    It’s all HUMAN and PEOPLE did this

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  25. Thankfully other languages I know aren’t like this:
    English is the most soulless + male + illogically spelt
    of my 4.
    It wasn’t always like this- there was more female ness & life in it before pre imperialism
    But alas *it was always maddeningly written!$not phonetic like my other 3

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  26. The ferments can be a big help when a Crohn’s patient is bouncing between relapse and remission… If the disease progresses further though the ferments will only cause trouble.
    They’re not difficult to make on your own. I always had a crock of kraut going back in my blood transfusion days so I know it isn’t too big of a job for someone on their death-pot.

    That’s a different take on it than I’ve heard before.

    I spent about an hour yesterday looking over different figures and graphs for any huge jump in IBD prevalence, but I couldn’t find one for any specific year except for maybe after Obamacare went into effect. It’s been a pretty gradual uptick since prednisone was invented in 1954.

    The most plausible explanation is incredibly boring: poor nutrition, antibiotics, and global warming.

    Antibiotics and anti-fungals have been overused for almost a century. On a macro-scale, this led to every tame species of bacteria and fungus dying off and leaving only the most ruthless of the bunch around.
    Then maybe the goo they use for CRISPR mixed the bacteria and fungus together creating the MAP. Maybe they mixed up on their own.
    (Also who cares, we’re still sick)

    On a micro-scale you’ve got to remember that antibiotics are make from fungal defenses against bacteria. The colon is supposed to have about 15% yeast/fungus/rotting, the small gut? Zero. What happens when you throw a fungal’s best weapon against bacteria into a body-zone that is never supposed to deal with fungus? Among other things: Crohn’s.

    And there’s at least three recent, large-sample studies that all say the same thing about Crohn’s and hot weather: every consecutive day in a heatwave increases a Crohn’s patient’s chances of being hospitalized by 5%. I’m pretty sure this means that three weeks in a heat wave doubles the chances of someone with Crohn’s ending up in the hospital.

    This all makes perfect sense to me, I know that this might all sound totally crazy to anyone else. That’s fine it’s how I live with things – I never told my friend who had AIDS since ’81 that I thought his theory about the mosquito sprays starting the AIDS crisis was mere correlation because I knew that it was part of how he got through the day.

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  27. Obamacare started in 2010 but most provisions weren’t rolled out until 2014 according to a preliminary Googling. Fukushima was March 2011. Nuclear has been contaminating the environment since the 40s that we know about. Alt nuke researchers also think nuclear is a force multiplier that makes whatever is also happening for another reason or a plethora of other reasons, worse. NSAIDs are also very bad for Crohn’s and seem to have been the last straw for me which I took larger doses of for a work related injury I had in 4/2011 (not antibiotics but I overused those too since I was first put on them long term as a tween/teenager for cystic acne and then started getting almost chronic sinus infections in college, when I was also put on a cancer chemo drug for acne (Accutane)). I had been having GI symptoms since birth (apparently) but I was able to control my symptoms well enough to get by until 2012 when I started becoming extremely ill. I also think GMOs were overtaking the food supply more and more and becoming harder to avoid. Avoiding wheat/gluten helped me for 10 years until it didn’t. I suspect that wheat was the big GMO crop for awhile but then everything started becoming GMO both deliberately and accidentally as crops became cross contaminated with GMO crops. Plus, stress. I graduated from law school in 2005 and took the bar exam and all that shit and started having escalating GI symptoms during my very first lawyer job as I was awaiting my licensing. Once I got health insurance (not a small point, see Obamacare which provisions were mostly rolled out in 2014) I started looking into it and ended up with a nutritionist who gave me the dietary advice that staved it off another 10 years. Honestly 2011 (Fuku year) was a turning point for me and I never got better after that, only worse. And radiation enteritis is a bona fide thing. I wonder if the constant bathing in radiation starting 3/11 just made the inflammation more permanent but you’re right, it’s hard to know what causes/perpetuates any of this or if all of it does (or none of it I suppose, but that seems unlikely). At any rate, it seems unlikely post-Fuku that guts inflamed for any reason will calm down in a constant bath of rads that will never go away and cannot be avoided. That’s my take on it anyway. It seems permanent now. Maybe Fukushima was the AquaNet on the beehive hairdo of 70 years of global industrial pollution including nuke which started in the 40s. It’s locked in now (and if it’s a force mutiplier, it’s making everything worse).

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  28. The progressive nature of Crohn’s also makes it very difficult to know what causes it, what makes it better or worse, and what’s working over time because just managing to stay the same with a progressive disease is actually a major accomplishment. My GI symptoms are still much better than they were before I started the cannabis and diet protocol I’m on now, and are maintaining, but the fatigue is definitely getting worse over time. The arthritis is better in my large joints but worse in my small joints (esp fingers). I’ve been tempted to try to make fermented food on my own but I know that cooked fermented food isn’t worth a hill of beans, it needs to be raw. Which increases the chance that I will end up poisoning myself if I don’t know what I’m doing, which I don’t. Superkrauts on Amazon makes amazing raw organic kraut and kraut juice at $15 a jar when you can buy shelf stable (not raw) at the grocery store for $2. There is a massive debate on the AI boards about fermented foods and about “boosting” the immune system in the first place when it’s your immune system that’s attacking you and conventional Crohn’s meds aim at reducing/destroying your immune system. It’s also unclear whether Crohn’s is even an autoimmune disease rather than just an immuno-mediated one so Crohn’s might be very different than other immune related issues and might respond differently to fermented food and other immune boosters. All I know is that raw fermented food seems to help, and also helped my acne and congestion which are also autoimmune. And that steroids seemed to make me sick as hell, or at least did not stop the progression of my Crohn’s. I was circling the drain until I started on the cannabis and diet protocol I’ve written about on this blog and I got worse once I had to stop the raw fermented food and supplements including high quality digestive enzymes, vitamin and mineral supplements, and probiotics. And when I have gone back to eating GMO I start having both (somehow) gastroparesis and accidents.

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  29. I’m trying to find a connection to radiation and exacerbation of Crohn’s.. So far still nothing but a gut feeling there. The more I learn about the measured levels of contamination and how long a person would have to be exposed to them – even the radioactive control rooms in the plant would take almost two weeks to deliver a lethal dose.

    However, there is compelling evidence that the radiation absorbed by an organ from as little as three CT scans can wipe that organ out – what’s the biggest money maker at the GI office? Diagnostic imaging.

    I had to do two CT scans to get a Crohn’s diagnosis. I think most of us do. Does that mean I have radiation sickness instead of Crohn’s?
    Absolutely not. There are people who do get killed by radiation sickness and it’s at least as horrible as what Crohn’s does to a person. But it’s wrong to co-opt the plight of people killed in nuclear was just to make a point. And it cheapens Crohn’s itself and everything we actually go through by likening it to something that we most surely do not.

    I used to tell everyone that doctors wanted to put me on chemotherapy because most cancer cocktails have prednisone in them. That was wrong because it distracts both from what chemo users and crohn’s sufferers actually are going through. It felt right to me at the time, but in retrospect I’m glad that the word was edited out of the column I wrote before it printed.

    I’ve got Crohn’s and it took me a long time to accept it. I spent a long time being angry about all of this and looking for some deep truth behind it, ended up finding it and it turned out there was no one to blame and it wasn’t anyone’s fault. Doctors didn’t invent it and never said they could fix everything. Crohn’s is one of the few things most of them will straight up admit that they are powerless against – and that’s not their fault any more than it’s their fault when someone loses a leg in a car accident.

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  30. Also, consider checking other blogs for people who make their own ferments. Check youtube and everything else. You don’t have to use the first batch you make, but over time you’d be able to make something custom tailored to your own needs for far less cash out.

    Yes there’s a chance you’ll poison yourself but you’ve already taken that chance with grass and found out how to make it work.

    There’s also something huge about connecting deeply with the elements you combine yourself with. It’s extremely powerful to be as involved as possible with the cycle of life you’re in. That’s a big part of what supplements are used to make up for.

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  31. All I’m saying is, radiation enteritis is real. It’s a known complication of radiation cancer treatment, mostly. It especially happens when radiation is focused on the gut for abdominal cancers. It can be acute concurrent with the radiation treatment or it can become chronic. How and why does it become chronic? I don’t think I am coopting the experience of people who have died when nuclear bombs were dropped on (or near) their heads when I say that radiation enteritis from more routine exposures is a real documented thing. Obviously scans you got after you were already symptomatic did not cause your symptoms, that’s impossible (and beneath the intellectual standards of this blog TBH). I am suggesting that being bathed in rads since the 40s (with a huge uptick since 2011) may be relevant to chronic enteric inflammation. It’s probably also relevant to immunity/autoimmune disease, seeing as how it causes cancer. So do immunity-decimating drugs also cause cancer.

    We don’t understand the exact mechanism of chronic radiation enteritis I don’t think. Why doesn’t it go away once the direct radiation source is removed? We also don’t understand what causes Crohn’s. My biopsy came back negative for AI even tho the countless aphthous ulcers in my small bowel and terminal ileum were diagnostic for it (textbook, even). They wanted to do another colonoscopy and get a “deep biopsy” (shudder) to try again, but I was so fucking sick by then I didn’t even care what the tests said, I just wanted relief. I asked if the results of the deep biopsy would change the treatment, and they said it wouldn’t. If it came back positive or negative the treatment would remain the same and on the same course — treatment for Crohn’s. So I declined. The treatment didn’t work though. Why not? Does it ever? Is it because I don’t even have Crohn’s? Is it because they have no fucking clue what Crohn’s even is and that’s why it’s impossible to treat? What even is it? No one even knows. How can I say I’m in some exclusive club of Crohn’s disease sufferers when the only criteria forming the group is chronic enteritis with no known (well, no admitted) cause and no cure? Don’t think for one second that mainstream sources tell the truth about radiation damage either. Nuclear is a multi billion dollar global conglomerate that owns the media. CBS and NBC were owned by nuke interests for decades (GE and Westinghouse). Nuclear owns medicine too (nuclear medicine is synonomous with modern medicine as far as I can tell). If doctors themselves are being honest about the treatability of Crohn’s Big Pharma sure as hell isn’t. The Social Security Administration isn’t. All I see here is mysteries and lies, and sadism. And misogyny, seeing as how women suffer the most from AI disease for which there is no effective treatment, no cure, and probably relatedly no admitted cause.

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  32. I am also hoping someone will comment on the “medically futile care as ritual” aspect of this post. In particular, what the effects are exactly of the social engineering. What are the messages we are getting from flogging corpses, zombification and whatnot specifically? How does it control our thoughts and therefore our behavior? I’m only able to think of it in a general way for some reason and I was hoping someone else would be able to flesh out the mind controlling effects of medically futile care as ritual. It was the entire point of this post.

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  33. Hi kaguyamouse. As I’ve said, I figured out what I need to feel relatively well, I just can’t afford it anymore. I gave up supplements last year along with any hope of ever “getting better.” Now it’s all I can do to keep myself in organic food and MMJ. It’s the middle of winter here but I actually do manage to get some sun as my porch is in direct sun and is fenced off from view. I sit in my rocking chair in the sun a few times a week even when it’s cold. Of course, it’s too hot to sit in the sun in the summer. I have extreme heat intolerance now.

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  34. So do I and I’ve forced myself 2 do it – that’s how I got wee bit better recently + zinc. I’m not a Crohnie though so could be barking up wrong tree
    VIT D is the only one u can get 4 free
    Getting overzealous with advice here:-)

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  35. On topic of large increases of Crohn’s rates, i came across this today while doing research on the history of advertising phrama products for Crohn’s:

    “The number of teenagers with Crohn’s disease has jumped more than 300 per cent in the last 10 years because of junk food and the overuse of antibiotics.

    According to figures from the Health and Social Care Information Centre, some 4,937 16 to 29-year-olds were admitted for treatment in England between 2003 and 2004, but last year the figure rose to 19,405.” – UK Telegraph By Sarah Knapton, Science Correspodent 1:01PM BST 18 Jun 2014

    So that makes what I said up there about not finding any major upticks Crohn’s activity less accurate. I was only looking at diagnosis rates – not actual rates of treatment. The rate of treatment rose several fold compared to the steady rate of diagnosis.

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  36. yes mouse I do get fatigue but I have to crap so many times a day there’s no lying around through it for me.

    Also, CFesq, I hear you for wanting to get back on topic of medical-mind-control. I’m going to quote myself from when I was almost seven-years post diagnosis. This is the second half of the article and goes into more detail about the psycho-pharmaceutical aspects of the mind control practice, the first half simply explained basic gaslighting by doctors.
    In perspective, this was all very true to me then, but I doubt I would have ever felt this way at all if I had been diagnosed in the post-crohn’s TV ad era. Getting diagnosed in 2002 meant having a condition NO ONE knew about, even most doctors. we were the lab rats for a lot of failed approaches and I was vehemently against giving up my body for science before I even stopped breathing.

    I’ve read enough of your blog to understand why while you were only diagnosed relatively recently, you have such a deep background with old-style invasive medicine that gives you a similar voice to the one more patients had before they made having bowel disease so “easy.”
    Everything you went through with family speaks volumes of the courage that it must’ve taken to go through with those doctor’s appointments that led up to your diagnosis, and I feel like I understand a big part of why that it took so long for you to come around to seeking an explanation for your condition.

    Now back to mind control…

    The starting dosage for prednisone saturates the body with something into hundreds of
    times the natural level of cortisol the body produces, so much so that a proportion of the
    people who go through with it are left dependent on the drug throughout the rest of their
    lives, because when faced with such high artificial levels of the hormone, their bodies
    cease to produce it naturally.
    This drug is known as an immunosuppressant because the immune system is the first to
    shut itself down in the face of a "death-cheating" chemical. The natural healing system of
    the human being takes a (permanent?) backseat to the influence of the synthetic hormone
    and any recollection of helplessness becomes unthinkable.
    The mindset of the prednisone user is one of needing no help from anyone, having no
    feeling and consequently no empathy for the feelings of others, constant insatiable hunger
    for everything that a person could possibly feed off of both spiritually and physically,
    constantly needing to stay busy, being invulnerable to pain both spiritually and
    physically, on and on.
    Following treatment with prednisone the depression of the immune system is maintained
    with a variety of "mild" immunosuppressants, and when the body adjusts to those and
    symptoms recur the patient (basically no longer a person) is "allowed" to return to
    prednisone as the cycle repeats itself, often punctuated by extended hospital stays and
    bowel amputation.
    Newer drug treatments seem to keep people away from prednisone longer, but it is very
    much the same old song and dance. It all boils down to: intestinal scarring will heal, but
    amputated sections of the bowel will never grow back. There is no combination of drugs
    that will make it so that a person never has to live with the symptoms of Crohn's again,
    there is no surgery that will do that.
    The advantages of staying totally drugged out for the rest of your life are that you can
    leave the entire process up to doctors and pharmaceutical firms, never having to use so
    much as a day of your life doing research about how to manage the disease any other
    way.
    Society bears the burden of modern medicine, a majority of patients won't spend so much
    as a day earning the funding that it costs to go this way, and in the long run they get what
    they pay for.

    The entire time that a person is using drugs to manage IBD there won't be a single day of
    it that they really get to feel like themselves, and chances are that there won't really be a
    day of it without Crohn's, either.
    Other than the fact that most people who die this way do it on a full scholarship through
    health insurance, the biggest selling point is that modern medicine will take complete
    responsibility for how bad you feel as long as you keep doing exactly what they tell you.
    So when the GI doc is routinely having a patient's fistulas drained and huge sections of
    their bowel removed over the course of extended hospital stays "it's all good because we
    did everything we could, I just hope what they learned from my death helps them find a
    cure for all the new people coming down with it."
    With alternative therapy (natural, holistic treatment) a person will still think and feel like
    normal, but throughout the learning curve with alternative therapy the disease will get
    harder to live with before it gets easier. Much of this time will be used towards studying
    the process of how to facilitate one's innate healing potential, and even more time will be
    used towards getting enough money together in order to fund it.
    For many, the least inviting aspect of alternative therapy may be that it forces a patient to
    live through everything that comes with it totally sober. Drugs make the people who use
    them crazy, and being crazy makes Crohn's easy to accept as its implications become
    real; anti-psychotic medication is frequently prescribed by gastroenterologists.
    Cognition is what the pursuit of effective alternative therapy has to offer.
    Being diagnosed at 18, starting drugs immediately, and following through with them over
    the course of a decade leaves a person at 30 without their twenties to learn from. Not that
    there was nothing to learn that entire time, but that what was learned about was a drugged
    up life that will never be able to relate to what life is actually supposed to be like.
    The option is whether a person chooses to live their life with IBD while pursuing
    alternative therapy in order to enrich that experience, or if they are going to have a drug
    experience with IBD instead.
    Life is more interesting than any trip on drugs, even when it means living with IBD.

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  37. Do you have a blog or a link to your previous Crohn’s related writing? I do not enjoy irony but I recognize it when I see it. There are surely people here who are realizing for the first time how bad Crohn’s really is and what it’s really like, including the treatments. Is it because there is a second Crohnie here besides me who is talking about it? Or is it because it’s a man saying it? If my family ever makes their way over here (probably after I’m dead) this is probably the point where they start second guessing their shitty treatment of me, because a man says Crohn’s is life changing (ending) and the treatments don’t help and make everything worse in horrifying ways. I will respond more later but those are my initial thoughts. Thank you for your comments.

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  38. And I say all that knowing that some of your comments to me are intentionally insulting (or something) and no, the irony is not lost on me there either. That a man would show up here and make passive aggressive insults (or something) and still to have his voice and his experience elevated over my own within my own “community” and my own fucking family would not surprise me in the least.

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  39. I understand. A male-appearing person showing up on a radfem blog can itself be considered gaslighting. I’d counter that the identity of the disabled overwrites the identity of male, but there is no formal guide for having the disabled identity like we have for marxism feminism or nazism.

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  40. Or, it could be the actual gaslighting where you insult me on my own blog (and pretend you didn’t) and accuse “newcomers” who write about Crohn’s from somewhere other than an infusion center of writing about it for publicity and not because they actually have Crohn’s. Even if that FB had nothing to do with me I found it consistent with your entire presence here, as a proud member of an exclusive club complete with benefits that actually have nothing to do with Crohn’s and everything to do with you being male (not a male-identified or male-appearing person, I mean a male with a dick) where people fawn over you and give you sympathy, including jobs and money, because you have Crohn’s. That has not been my experience with being a seriously chronically ill person and I doubt any women have ever experienced that. I am not here for any reason other than to tell the truth about Crohn’s, how bad it is, and how all women are treated once they become seriously ill, and to document that while I still can and before I die or get so sick I can’t. So I have absolutely nothing to lose by suggesting (for example) that Crohn’s is probably related to radiation exposure, whereas you clearly enjoy being a medical mystery and compartmentalizing the whole experience as if it has nothing to do with anything except your own specialness. I have so far rejected (and been denied) the infusions you think prove people are really sick but you accept them and then continue to believe that your illness is just a mysterious run of bad/special luck (even as you seem to grok that the treatments actually make you worse). So “beware of newcomers” indeed who have nothing to lose in blowing a hole in your special identity as a disabled/nonthreatening male and bona fide Crohnie, Patient Zero Super Hero. And if this were really a radical feminist blog, you would have women lining up to give you cookies and a “spare” room (instead of giving it to a woman or keeping it for themselves) for being so woke even as you insult them. Thankfully this is not a radical feminist blog.

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  41. here’s a direct link to the post where the resident bullies of a 10k member crohn’s group are taking turns calling me “snowflake” for pointing out that the runway-model-perfect picture of a belly and hands does not represent our scars and prednisone-handles: https://www.facebook.com/groups/10932005261/permalink/10161152186665262/

    You’ll see that the timestamps there line up with my time in the infusion chair. Ain’t that quite a thought? Having Crohn’sers taking bite after bite of me through fb while I’m sitting there getting pumped full of poison?
    I think it’s poetic.

    I’ve pretty much lost the capacity to take anything personally anymore. Part of that is how much grass I go through for myself, the other part is having had to eat my own words about curing myself enough times to stop being embarrassed about being sick.

    And yeah I’m super special. So are you.

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  42. “A male-appearing person showing up on a radfem blog can itself be considered gaslighting” no but your condescension and time-wasting can be considered condescension and time wasting. Go fuck yourself, seth.

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  43. Yeah I’m a member of that group altho I don’t think I’ve ever posted anything there. Why are you attacking the “crazy” druggie Crohnies (and condescending to us here) instead of writing your own material? I honestly think there is an enormous gap in online publishing about Crohn’s, specifically disaffected Crohn’s patients who aren’t satisfied with toeing the Big Pharma line and who refuse to swallow the propaganda that this disease is treatable or even manageable, let alone curable. It’s why I welcomed you initially, because I really do welcome that perspective no matter who it comes from. I’m not surprised that you are unable to just speak from that perspective but I am disappointed that I am, once again, the lone voice that people gravitate to but can’t manage to come up with original material that makes ME think for once instead of regurgitating my own material back at me or leaving me wondering if they even have a point. I’m fucking sick of doing all the heavy lifting. If you can’t help me with that then leave.

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  44. I see I’m not the only one who is aggravated. And still no conversation about the actual topic of this post. I might do a part 2 with more thought put into the specific effects of this patriarchal ritual. IF I can even think about it that specifically. For some reason I’m having trouble really getting down to brass tacks. I mean it is a bit of a scattergun approach to traumatize the entire population about something that’s going to happen to us all eventually: we will get too sick, old, injured or whatever to stop Big Medicine from having its gnarly way with us. This is just so viscerally horrifying I’m finding it difficult to think about except in a very general way.

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  45. Disability overrides XX oppression? Seriously mate!?? Scandinavia & Netherlands sponsor disabled dudes’ prostitution consumption with womens’ taxes!@#!

    U know what my main fear is being feeble from chronic illness? Being impregnated by male attackers cause I have no strength 2 fight or scream much. I have 2 old fashioned walking sticks 2 heavy 4 me; but I carry them as a weapon.

    Disabled women dont matter cos there’s no use 4 sick slaves.

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  46. Exactly right kaguyamouse. The thing I’m most afraid of is being impregnated and sick at the same time which is half of what my dread of being homeless is all about. Not sleeping peacefully in the woods with Crohn’s, but being raped and impregnated and subjected to the legal and medical system as a consequence, plus homeless and Crohn’s. It’s not about having a fucking roof over my head, who cares about that? I would be more than happy to freeze to death in the rain at this point but THEY won’t let that happen. This is fucking horrific.

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  47. I’m fine with my catheter-hole being the reason you’d like to tell me I’m not welcome here.

    This whole thread of comments doesn’t mesh at all with the rest of your blog. I’m not sure what it was like being a lawyer, but I do know a lot about being a crohn’s patient and I can see that for whatever reason, me being here is interfering with your coping process.

    Sorry about that.

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  48. Indeed it does not mesh. It’s because of YOU, isn’t that completely obvious? The rest of us have been here the entire time. YOU are the variable, not anything or anyone else. And yes, expecting most people to actually contribute anything worthwhile is exactly the same as asking them to leave. Bye.

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