The Post In Which I Mom-Shame. Sorry Not Sorry.

This was and is the absolute last straw.  I have been writing health and medical-related content on this blog for almost 2 years now and I have deliberately avoided this topic because I knew how it would be received.  Mothers have been criticized and punished for their choices (and their femaleness) forever and now that we are all enlightened and feminist and shit, mothers and motherhood are beyond reproach.  I know because the internet said so!  Mom-shaming is right out, no one is allowed to criticize women who conceive, gestate, birth and/or raise children for anything because liberal feminism and besides, under patriarchy, women’s and mothers’ choices are artificially limited and (therefore) coerced so the fucked up things women “choose” for themselves and their children are not women’s fault.  Radical feminism supposes that the things women choose are not even choices at all.

First as a liberal feminist and later as a radical, I accepted one or the other of these rationalizations for a long time and refused to criticize women and mothers on feminist grounds, where women as oppressed people previously and/or currently lack the social and political power to be fully actualized, engaged human beings and the central agents in their own lives.  Between feminist arguments centering agency and non-agency (liberal and radical viewpoints respectively) women and mothers have secured a free pass to do and choose anything, absolutely anything, regardless of the consequences to themselves or to other people, or to animals, or to the living planet.  Rather than examining cause and effect — meaning the intended and unintended consequences of our action and inaction — somehow “shame” has become the focus and women are not to be shamed, and by shamed we apparently mean held accountable for their own actions.

For one reason and then another, cause and effect have been deemed irrelevant to women and women’s choices and women’s interactions with our world — well, with mensworld as it were.  Before feminism, women were simply expected to do what they were told and they usually did.  But cause and effect are always relevant so long as we are alive on this planet because cause and effect is consistent with natural law.  Get it?  There are laws that have existed longer than humans, longer than civilization, longer than patriarchy, and which sure as hell predate feminism, and for a long, long time we have acted as if these natural laws were unimportant, or less important than other things.  Less important than men’s laws.  More recently, less important than not-shaming women.  This has been our mindset for thousands of years by now — at least 10,000 years by my estimation, which was approximately the beginning of agriculture where humans sought to overcome or tame nature to our own ends.

We did this, we chose this, and we have been doing it and choosing it for a long time.  Where we are now could be said to be the result of 10,000 years of that unnatural/patriarchal policy and practice of eschewing natural law.  And where are we?  I don’t think it would be exaggerating to say that we are in hell, utter hell, and if the above-linked article isn’t the perfect illustration of that type and degree of hell then I don’t know what is.

This woman gave birth to a child who was born with no anus, a missing kidney, a neurologically dysfunctional colon and bladder and a tethered spine.  He was therefore temporarily stomatized for fecal collection as an infant and would later require laxatives and enemas daily for life to eliminate waste through a surgically-constructed “anus” and would likewise need to be catheterized every 3-4 hours for life in order to pee.  The child was in pain every moment of every day and night even though his doctors were certain his conditions weren’t painful, and their negligence including misdiagnoses and complications from his spinal surgeries caused his bowel and bladder conditions to become even more debilitating and more painful than they would’ve been without their help.  And that’s saying something isn’t it.

Continue reading “The Post In Which I Mom-Shame. Sorry Not Sorry.”

Defeat, Entrapment & Suicide. A Recent Model of Suicidality

Since writing about my own Crohn’s disease and social unsupport-related suicide (well, euthanasia) attempts I have researched suicide a bit and found something interesting.  Much more interesting than the usual twaddle about anxiety, depression and so-called “mental health” issues that sorry, every woman in this hell-dimension probably experiences somewhat regularly as oppressed people who are almost always trying to keep things alive in a necrophilic culture whether it be plants, pets, children, partners, elderly parents and/or ourselves.

In my estimation, the unusually high stakes of that particular game and myriad of obstacles intentionally placed in our way — meaning quite literally that if we let our guards down for a fucking second, and even if we don’t, literal death will come knocking for ourselves and/or our dependents for which we will suffer both the loss and the blame — would tend to be anxiety-producing in many, most if not all women.  Understanding intellectually, intuitively and/or by experience that our role as lifekeepers in a more or less global necrophilic (patriarchal) context is likely to be impossibly difficult (and ultimately futile, because mortality) is depressing.  And when I say depressing, obviously I mean that any of us would be forgiven if we just couldn’t get up the mental or physical energy to do it anymore.

And we all know the effects of gaslighting by now since it was very helpfully illustrated in a play and then 2 derivative Hollywood movies that perhaps not very many modern people have seen but which concept has come to be understood and referenced in popular culture as well as in clinical and research literature studying abuse — the intent and effect of gaslighting is to deliberately drive the victim insane.  So we have deliberately and predictably anxiety-producing living conditions for most if not all women, which conditions are or become depressing due to futility and exhaustion and then everyone we know and indeed our entire culture/s gaslight us about all of this — telling us in a million ways every day that these conditions that are demonstrably real, aren’t — until we crack, if we don’t die first.  There’s your “mental health” crisis innit.

Continue reading “Defeat, Entrapment & Suicide. A Recent Model of Suicidality”

A “Rational Suicide” Note. Ft. Anne Örtegren.

This is a “suicide” note left by a ME/CFS sufferer who sought and found relief from her suffering via legal, medically assisted suicide.  She says this manifesto took her months to write, which I do not doubt a bit: it is long, detailed and polished and was written when she was feeling terrible.  She wrote it with the intent to describe her almost indescribable pain and experience, and to convince others to take action on behalf of ME/CFS sufferers, both of which are lofty communication goals when anyone is seriously ill.

Describing and convincing have been my most impossible endeavors since I’ve been seriously ill myself and I think I have mostly failed, judging by others’ reactions to everything I’ve managed to gather the physical and emotional grit to attempt to communicate: that I am seriously, hopelessly ill with an incurable, progressive disease, that there is no bottom to how bad this can get, and it matters not what anyone thinks about it.  Some things are just true regardless of whether anyone believes it.

In this note, ME/CFS patient Anne Örtegren describes symptoms and dilemmas I have experienced myself and she foresees logical outcomes to her predicament, something sick people and especially sick women are never allowed to do because catastrophization.  For example, she knows that her heightened sensitivity to light and sound will make treatment or recovery in a hospital setting impossible where the standard of care in that environment requires constant activity and interruptions, and provides no privacy and no escape from the harsh industrial lighting, interrogations by (allegedly) well meaning staff and the general hustle and bustle of capitalistic money making on the backs and bodies of sick and dying people.

That is but one example of a sick person making informed prognostications regarding likely outcomes of the things other people want to do to us, and as someone who shares these sensitivities to light and sound (and therefore an aversion to hospital settings) as but one example of our shared experience of being seriously ill, I appreciated her spelling it out.  I also feel extremely sad that she had to, and furious that no one who allegedly cared about her wellbeing including medical professionals who should be fucking sensitive to the actual needs of real patients could make the leap themselves.  There are many such examples in this letter.

See for yourselves, and understand that as illuminating and raw as this letter is, it’s also been edited by the publisher and a so-called suicide prevention expert because the bottom line everywhere appears to be that there is no such thing as rational suicide or euthanasia because well people and people who make money off of the long-term sick and dying say so.  And because living in this capitalistic, patriarchal nightmare is so hideous for so many people that “suicide contagion” exists, where just knowing that someone, somewhere had whatever it took to end themselves is likely to cause untold numbers of happy, healthy consumers with bright futures to do the same damn thing.  Yeah that’s it, let’s keep telling ourselves that.

The letter as published is reprinted below.  The unedited letter supposedly exists online somewhere if anyone cares to look and has the energy to figure out how and where the edited version differs from the original.  Comments are open below.

Continue reading “A “Rational Suicide” Note. Ft. Anne Örtegren.”

WWNRD? Or, What Would Nurse Ratched Do? Ft. Nurse Ratched

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Nurse Ratched was a sadistic, evil bitch at the time and would be that and a dangerously out of touch political dinosaur now.  Please do not do what she would do.  If anything, ask yourself WWNRD and then do the opposite.

Speaking with my mother recently made me sympathize with young smartasses and activists who are just waiting for the elder generation — the out of touch Baby Boomers and the Baby Boomers’ parents and kids by this point — to give up the ghost and die.  A “dinosaur” or political dinosaur is someone whose philosophy and worldview are obsolete and rooted in problematic values and circumstances of the distant past.  For example, as a young activist in my teens and 20s I remember thinking and saying that the world would be a better place once those who grew up with unregulated environmental pollution and legal institutionalized racism, sexism etc. died off because their environmental unconcern, racism and sexism were so entrenched that they either didn’t realize, agree or care that what they were doing and being was wrong.

Welp.  After being sick my entire fucking life with an undiagnosed autoimmune disease, and going on 8 years with a diagnosed one, I am having these same thoughts now about the older generation of Western medical practitioners and others who were born, grew up and/or progenated in a low-population, relatively unpolluted pre-nuclear world where lifelong serious, untreatable, incurable and progressive disease existed only in very small numbers and therefore where older people seem to believe and act as if chronic illness did not and does not exist at all.

To be clear, chronic illness obviously did exist in our recent and distant past, for example, natural uranium deposits are known to cause acute and chronic radiation sickness to those who spend time around it.  And humans have likely always been struck down with genetic and congenital maladies that might not have outright killed them.  But old/er people seem to have lived their entire lives without chronic illness, including autoimmune and immune-mediated disease, front and center in their consciousness or as a part of their lived experience and this does make sense: before, say, the 1940s and 50s the worst industrial (man-made ionizing nuclear) pollutants had yet to be widely dispersed and contemporary Western medicine did not, because it could not, routinely pluck seriously ill and/or nonviable neonates, infants and others from the brink of merciful, natural deaths.  Today, seriously ill children and others are rather forced to live for years, decades and lifetimes with serious illnesses that do not outright kill them, because Western medicine will not allow it, but which Western medicine has yet to figure out how to treat, relieve, or cure.

Having researched chronic illness, primarily autoimmune and immune-mediated disease for going on 8 years now, it seems to me that, in stark contrast to the life experience and worldview of older people, young people today generally are very aware that incurable and progressive chronic illness exists.  Over and over I see that young people today, at least young Western people, well understand and accept the reality of chronic illness much more freely than older people, and the implications of that are extremely dark.  From what I can discern, this difference in worldview likely exists because young people are increasingly becoming seriously chronically ill themselves.  Young people understand and accept the material reality of chronic illness because experiencing it personally as individuals and in their peer group they have no choice but to accept it.

And over and over I see that older people are generally ignorant about issues of chronic illness and that they have not experienced it either individually or in their peer group.  Frighteningly, instead of recognizing their blessed ignorance and trying to remedy it, older people think that their personal opinion based on outdated and second- and third-hand pseudo-knowledge about chronic illness matters or affects the outcome.  It doesn’t, but unfortunately many medical professionals, healthcare policymakers, paid and unpaid caretakers and the like embrace an outdated worldview that no longer applies in our post-nuclear, Western world, and thus do not or cannot fully believe the self-reports of, or even contemporary peer-reviewed medical research addressing, the experiences and needs of seriously chronically ill.

Continue reading “WWNRD? Or, What Would Nurse Ratched Do? Ft. Nurse Ratched”

The “I Told You I Was Sick” Tombstone Gag. That Shit Just Never Gets Old. A Halloween Hypochondria Post.

tombstone

Will someone please explain to me how a person’s literal death is evidence that they weren’t actually sick at the time they died or ever?  The “I Told You I Was Sick” tombstone may (or may not idk) have been around as long as tombstones themselves have been around and it is even cataloged in a collection of “curious epitaphs” as the epitaph of an ancient hypochondriac.

The epitaph.  Of a hypochondriac.  Hmm.  While I process that very concept a moment, I Google “hypochondria” and find that the word doesn’t mean exactly what I thought it meant.  Or rather, the origin of the word itself was nothing like I had assumed.  Apparently, the very concept of unverified/unverifiable illness causing patients extreme physical and mental distress originated from complaints involving the abdomen.  Why doesn’t that surprise me at all.  From Wiki:

Among the regions of the abdomen, the hypochondrium is the uppermost part.  The word derives from the Greek term ὑποχόνδριος hypokhondrios, meaning “of the soft parts between the ribs and navel” from ὑπό hypo (“under”) and χόνδρος khondros, or cartilage (of the sternum).

Hypochondria in Late Latin meant “the abdomen”. 

The term hypochondriasis for a state of disease without real cause reflected the ancient belief that the viscera of the hypochondria were the seat of melancholy and sources of the vapor that caused morbid feelings.  Until the early 18th century, the term referred to a “physical disease caused by imbalances in the region that was below your rib cage”.  Robert Burton’s The Anatomy of Melancholy (1621) blamed it “for everything from ‘too much spittle’ to ‘rumbling in the guts’.

Bolds mine.  Apparently, people have been presenting to doctors for a long, long time complaining of upper abdominal pain, too much spittle chronic nausea and/or drooling, and rumbling in the guts the dreaded intestinal gurgling that often foretells an impending Crohn’s flare and they had morbid feelings about that.  You don’t say.

I should mention here that capsule endoscopy, which is currently the only way to get diagnostic imaging of the lining of the small bowel, is a very new technology that’s extremely expensive and often not covered by insurance.  Before modern imaging technology, including capsule endoscopy technology, diseases of the upper part of the abdomen in particular were virtually undiagnosable.  Due to its inaccessible location, in practice, even today, for many if not most people getting a reliable diagnostic image of the hypochondrium (!) or the upper part of the abdomen and gastrointestinal tract is impossible.

Continue reading “The “I Told You I Was Sick” Tombstone Gag. That Shit Just Never Gets Old. A Halloween Hypochondria Post.”

Just Because You “Refuse to Believe” Something Doesn’t Mean It’s Not True. Ft. Greta Thunberg.

I guess this is the speech that gave Donald Trump an excuse to mock 16 year old climate activist Greta Thunberg, calling her “a very happy young girl looking forward to a bright and wonderful future.”  In it, she says she refuses to believe the “adults” who rape and pillage the environment living planet are evil.  She doesn’t say why she refuses to believe it.  She offers no evidence that it’s actually not true and that the worst of the worst industrial polluters rapists and pillagers of the living planet including water, soil, air and biomass (read: food, pets and ourselves) are actually good, or even neutral actors.  No, she just refuses to believe that the literal monsters responsible for global industrial pollution and its effects are something other than evil because (unstated) reasons, or because no reasons at all.

But I have news for Greta and for anyone and everyone self-inflicting and/or spewing thought-terminating cliches and “refusing to believe” thus and so: just because you refuse to believe something doesn’t mean it’s not true, and your or anyone’s refusal to believe doesn’t make anything that’s actually true, untrue.

Mkay?  People think and say that Greta Thunberg is brutally honest but “refusing to believe” is not honest.  Greta herself thinks the reason she is able to be brutally honest with herself and others is because autism, but Greta’s self image isn’t entirely realistic is it?  She is just a child afterall.  In fact, I’m not even entirely sure than any autistic person would naturally “refuse to believe” anything, and instead would either tend to believe or disbelieve depending on the evidence.  If they didn’t have enough evidence to make an evidence-based judgement they would look into it further until they knew for sure, especially if the subject matter was an autistic “special interest” like climate change seems to be Greta’s autistic special interest.  But Greta isn’t interested in looking further into it in this case to find out for sure whether industrial polluters, corporate overlords and lapdog politicians are evil or neutral or good.  Why not?

Continue reading “Just Because You “Refuse to Believe” Something Doesn’t Mean It’s Not True. Ft. Greta Thunberg.”

American Feminism Was (Is) a Psy-Op. Western Medicine Shored up Male Power. Discuss.

This post is about American feminism specifically since that’s the brand I know the most about and the one that affects me every day of my life.  I am not talking about other “feminisms” in other places but here in my own country where, after 100 years of feminist activating, including actual and/or perceived successes American women still face the following oppressive realities of living under American men’s particular brand of patriarchy:

1.  We are removed from natural food and water sources and rely on necrophilic men to supply us and our dependents with the material necessities of life including food, water and plant-based medicine;

2.  Our land including our soil, air, water and biomass (i.e. food, pets and ourselves) have been consistently poisoned since the 1940s (that we know about) with male-made nuclear radiation where this kind of ionizing radiation is known to be dangerous and not compatible with life or health;

3.  Physical and mental “health” have been medicalized where “health problems” are synonymous with “medical problems” meaning that in America, health and Western (capitalistic patriarchal) medicine are the same thing;

4.  All institutional power remains in men’s hands with only token female representation in positions of military, economic, academic, scientific, police, media, regulatory and all relevant political and social power in every area.  This includes 100% male control over Western medicine and therefore over sick and dying bodies.

This is a partial list and a specific progression but it will do for now.

What is a psy-op?  A psy-op or psychological operation appears to be a propaganda campaign including slogans aimed at a political enemy in order to get them to activate toward and achieve state interests.  For our purposes “state” interests is interchangeable with patriarchal interests and refers to male interests and male power achieved at women’s expense while “propaganda” refers to American media including representations of so-called feminist speech.  Working backwards, we can see that once feminists (of all people!) started activating towards and achieving patriarchal goals, there was indeed a propaganda/slogan campaign that preceded it.  Also for our purposes, we can presume both causation and intent where the result of this propaganda campaign — women activating towards male interests — was completely foreseeable and besides, if men didn’t like the result of women activating towards male and against female interests men could’ve stopped or changed it at any time.  Of course they never did.

Continue reading “American Feminism Was (Is) a Psy-Op. Western Medicine Shored up Male Power. Discuss.”

Cannabis Refugee, Esq. One Year Later. (Meta Discussion)

As my readers may’ve seen or sensed from the recent comments and content on this blog, I have become disillusioned with the CRE writing project and may decide not to continue writing about my experience as a Crohn’s patient trying to survive outside the Western medical system that was not helping me and was only making me worse.  As far as I can tell, this project has not inspired any additional writing or critical thinking on this subject, my posts have not been widely shared or inspired much interesting feedback, and this work has not opened up any additional opportunities for me in the way of writing or activism.  Of course, those were not the reasons I started this blog in the first place but they are to be considered when looking into the future of this project and whether it is in my or anyone’s best interest that it continue.

My original intent in starting this project nearly one year ago was to document my experiences as a seriously ill woman for whom conventional medical treatments were not working including the social, financial and health-related fallout of this system that seems designed to control and punish sick people while we carry the blame and shame for Western medicine’s failures and even its lies.  At times my health and financial situation have been so precarious that I actually believed (and still do believe) that I am going to die here, alone and in the middle nowhere, and I wanted the truth about what happened to me to be known or at least knowable by those who would wonder what the hell could’ve possibly happened that led to that sad and lonely end.

Continue reading “Cannabis Refugee, Esq. One Year Later. (Meta Discussion)”

The Absurdity of the Euthanasia Discussion in the Absence of Effective Medicine and Social Support for the Seriously Chronically Ill.

I cannot tell you how absurd it is to be seeking euthanasia as the final end to this awful Crohn’s journey when I’m not suicidal and I don’t want to die.  What I do want, all of which is illustrated brilliantly in this clip, is 1. effective medical treatment for my disease, or failing that, consistent access to effective pain and symptom relief, in my case medical marijuana which has been used successfully for thousands of years to ease specifically gut ailments and which use is supported in contemporary peer-reviewed medical literature particularly for Crohn’s; 2. social support with fulfilling basic tasks and the activities of daily living like shopping, cleaning, cooking and the like; and 3. to be relieved of external constraints that make existing as a chronically ill person a living fucking hell and a consistent nightmare, which constraints have nothing to do with being ill and everything to do with being an oppressed person and failed consumer/producer under capitalism and patriarchy.  Constraints like poverty.  Fear of (and actual) male violence.  Disability-based (and all) discrimination.  Things like that.

But I can’t have any of those things — effective medical treatment, social support, and freedom from oppression — because under the current system those things don’t actually exist so the easiest thing for everyone would be for me to simply disappear or to have never been born in the first place.  Failing that we have euthanasia otherwise known as assisted dying or medically assisted suicide.  Of course, poor and other unsupported “euthanasia candidates” — who likely don’t have $12,000 and the good health and social support needed to have their efforts rubber stamped/make it official — just know and experience this process as good old-fashioned suicide.  Who knows what Chris Rock really thinks about euthanasia for seriously ill and dying people but he’s not wrong to see the absurdity in it, at least under the current system.

Continue reading “The Absurdity of the Euthanasia Discussion in the Absence of Effective Medicine and Social Support for the Seriously Chronically Ill.”

Happy New Year! 2018 Year In Review (Chronically Ill Version). Ft. Cannabis Refugee, Esq. Meta Discussion.

2018 Year in Review (Chronically Ill version).  I was sick every single day, 365 days in a row, no shit.  I had a couple of relatively good days but I have no idea what I did to deserve them and was unable to replicate them.  I had a lot of bad days.  Overall, I am feeling worse over time.  For some reason I’m still here which terrorizes and terrifies me every minute of every day.  I surpassed my mental and physical limits a long time ago but no one cares what my limits are.  It’s a miracle that I’ve avoided either the hospital or jail due to intractable physical and mental pain.  The End.  LMAO @ “The End.”  Who am I kidding, this is going to go on forever.  I’m starting to think I died and came back because there is no way any human being could live through this for this long and I’m pretty sure I actually died like twice, if not 4 or 5 times that I can think of.  Am I am zombie?  Or a ghost?  A ghost would make perfect sense since I seem to be invisible now.  What the fuck.  I have no idea what’s happening to me.  The End.  LOL.  FML.

But seriously, I have found myself wishing people “Happy New Year!” as if there is anything likely to be “new” about it when my life as a chronically ill person has been completely the same day in and day out for going on 6 years now (I was diagnosed in 2013).  Meet the new boss!  Same as the old boss.  And chronic, progressive illness is the boss baes.  I no longer have much if any say over what happens to me.  For some reason in my well-wishes I have also included something like “I hope 2019 sucks less ass than previous years” but truthfully is late-stage capitalism and patriarchy — or chronic illness — likely to improve with time?  Is it?  I’m just asking.  And apologizing to anyone I may’ve said that to because in hindsight I realize it’s ridiculous.

I have enjoyed (not the right word) writing this blog and interacting with those who choose to do that.  I hope it has been helpful and a cohesive, coherent and relevant project.  I think it has been.  The first posts I wrote for this project were literally the first opportunity and ability I had in the nearly 4 years I have been here to gather and articulate my thoughts about what has happened to me since I’ve been ill and treating with both Western medicine and now medical cannabis, including what it all means politically in a big-picture way.  I think I did that accurately, and radically, and well.  Importantly, this project also helped me to recover my sanity and even my identity which were suffering under the heat and weight of my lived experience — living with a chronic, progressive disease, as an unkept female, under late-stage capitalism and patriarchy is hell, utter hell.  I know there are people here who understand what that means.  I didn’t understand it until it happened to me.

Continue reading “Happy New Year! 2018 Year In Review (Chronically Ill Version). Ft. Cannabis Refugee, Esq. Meta Discussion.”

Aaaaaannnndddddd…We’re Back to Grateful. I Literally Forgot What a Full-Blown Crohn’s Flare Was Like.

So for the past week or so I have been in a full-blown Crohn’s flare.  Being sick as hell all the time anyway, even when my GI symptoms are relatively minimal (meaning, minimal for me as a person with a chronic and debilitating autoimmune and GI disease) I guess I had forgotten how bad things can actually get!  Despite having recently worsening symptoms like crippling fatigue, arthritis in my fingers, toes, shoulders, hips and spine, dizziness and trouble walking, my GI symptoms have been at a blessed minimum lately, consisting merely of having to ruthlessly police my own diet and avoiding most foods available in the supermarket or anywhere; waking up nauseated every single day and having to lay (well, writhe around) in bed for an hour every morning trying to fart (apparently extreme bloating makes one nauseated?  Who knew!); being hit randomly throughout the day with stabbing abdominal pains, gas and bloating, “heartburn” which is really esophageal spasms that feel more like a cardiac event than a gastrointestinal one, pangs of nausea and other distressing sensations, and being glad I live alone so I can accomplish this daily ritual/grind in peace.

Other than that (!!) I felt relatively okay until about 10 days ago when the dreaded intestinal gurgling began.  As far as I can tell the gurgling starts as I become more and more inflamed and less and less able to control my symptoms — is it masticated food trying to bypass an obstruction?  Because that’s what it seems like to me.  In short order I was in a full-blown flare in which my abdomen feels, looks and is like a bloated whiskey barrel overstuffed with boggy loaves of bread, broken glass, molten lava, and poison.  The broken glass, molten lava and poison are self-explanatory (severe sharp/gnawing/grinding pain, burning, smothering malaise).  The boggy loaves of bread are my inflamed intestines and that’s exactly what it feels like — for instance, instead of moving and/or bending easily at the waist, bending over becomes grueling and distressing and literally feels like I am working against a waterlogged loaf of Wonder bread where my appendix and terminal ileum should be (abdominal right lower quadrant).  There’s another loaf where my ascending colon should be and so on.  If I drop something on the floor whilst in this sorry state it better be something I won’t be needing for awhile because I literally cannot bend over (or reach!) to pick it up again.

Continue reading “Aaaaaannnndddddd…We’re Back to Grateful. I Literally Forgot What a Full-Blown Crohn’s Flare Was Like.”

It Might Be “Ok Not to be Ok” For a Few Days But It’s Definitely Not “Ok Not to be Ok” Forever. Aka Chronically Ill. But Wait! There’s More.

Stop gaslighting everyone Jessie J!  This song and this sentiment (that it’s “ok not to be ok”) seem to be very popular amongst the very young and “neuroatypical” Tumblr crowd suffering from, among other things, anxiety and depression.  Reading the comments under the YouTube video reveals a lot, well, it reveals a lot of the same thing: young people feeling “not ok” and suffering through dark times only to reemerge triumphant in the end, and probably on addictive and expensive psych meds that will likely cause serious and even permanent side effects like involuntary muscle movements (and death).  That counts as “ok” apparently, and the “not ok” is “ok” if and only if it doesn’t go on too long and as long as you “get help.”

Of course, the side effects iatrogenic illness and injury from the psych meds themselves, including permanent neurological disability and death — and the “not ok” those cause — are worth it as long as the person is made ok now, for the time being.  Whatever “ok” means in this context because I sure as hell can’t figure it out other than that “ok” seems to mean “compliance” and specifically, willingness to engage with and submit to capitalistic patriarchal medicine.  Compliance and submission = ok.  Does this sound like it’s actually ok to not be ok?  Or does it sound like a bunch of shit?

And what happens when people are “not ok” for a long time, or forever?  Just ask someone who is chronically ill how friends and family perceive their illness once it’s gone on for months, years, or a lifetime.  In my own case, when I lost my apartment in a hurricane, had to move in with my ex-partner’s mother and was getting sicker by the day, my friends and family harassed me constantly for “updates” about the hurricane damage, my housing situation and the status of my health but I soon realized they weren’t looking for truthful reports so much as they were demanding constant assurances that I was Ok and that everything was fine.  When the truth was I had never been so not-ok in my life and considering the nature of my incurable, progressive disease I was unlikely to be “fine” ever again.  No one wants to hear that!  Hearing that makes them feel not ok!  And healthy people have to feel ok all the time no matter what, even at the expense of sick people and sick people’s ok.  So is it really ok to not be ok?  No.  Sick people have to learn to fake it if they want (or have no choice but) to maintain these relationships.  But there’s more.

Continue reading “It Might Be “Ok Not to be Ok” For a Few Days But It’s Definitely Not “Ok Not to be Ok” Forever. Aka Chronically Ill. But Wait! There’s More.”

Baby Poop Smoothies in the Age of Nuclear, Autism and Autoimmune Disease. Caveat Emptor Y’All.

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ca·ve·at emp·tor
/ˌkavēˌät ˈem(p)ˌtôr/

  1. the principle that the buyer alone is responsible for checking the quality and suitability of goods before a purchase is made.

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Baby poop smoothies.  Have people heard of this?  It’s along the same lines as fecal transplants, where both are alternative treatments used to treat and even “cure” various bowel ailments from which people are desperate, absolutely desperate for relief.  People suffering from gastrointestinal dysfunction and disease are literally willing to eat, drink and/or rectally insert other people’s shit in order to make themselves feel better, and as a Crohn’s patient myself whose serious debilitating illness was not responding to conventional care, I understand what would move anyone to attempt drastic measures to relieve the pain and disability of a crippling gastrointestinal condition which can quickly make anyone’s life unbearable.

In my own case, I submitted to suffered through 2 years’ worth of ineffective and damaging Western medical treatment for my Crohn’s; the relentless agony of un- and undertreated Crohn’s disease was hellish and terrifying, and despite accepting treatment I was only getting worse.  When I saw what was happening to me, and that the path I was on would not lead to a good place, I took my health and life into my own hands and moved across the country alone to legally treat with medical cannabis, otherwise known as marijuana.  If I hadn’t done that, and was left to suffer through more Western medical treatments (or no treatment at all) I would have likely sought relief with various alternative treatments with little or no regard for their weirdness, offensiveness, or likelihood of success.  Although I had researched fecal transplants and found that they are not indicated for small bowel Crohn’s, which I have, I am sure that eventually I would’ve come across the concept of, and been tempted to try, the Baby Poop Smoothie.

Continue reading “Baby Poop Smoothies in the Age of Nuclear, Autism and Autoimmune Disease. Caveat Emptor Y’All.”

Netflix Docu-series “Afflicted”. I Watched It So You Don’t Have To.

Thanks to one of my readers for the recommend!

The above is a vid made by one of the patient/participants in Netflix’s new docu-series “Afflicted,” a 7-part series which follows 7 chronically ill people around documenting their experiences with illness and treatment and which was pitched to the participants as a project that would give a credible voice to seriously chronically ill patients but which ended up doing the opposite.  This patient/participant basically disavows his involvement with the project and slams the director and others making creative decisions for lying to the patients about the nature of the show and the motive for making it, where the participants’ mental health (and by extension their physical ailments) were not taken for granted but rather were put up for debate.  There are also a couple of criticisms of the series online from the so-called “chronic illness community” framing the series as tasteless entertainment — an offensive medical mystery whodunnit crafted for the able-bodied to judge whether the symptoms and diseases these patients describe are “real” or all “in their heads”.  That’s a fair criticism of course and I will leave it for that community to rip it to shreds on the grounds of, essentially, ableism.  But let’s go further.

My main problem with this 7-hour series largely lies in the last half hour or so, where we see that nearly all the patients have shown vast improvements in their symptoms and qualities of life through engaging with various alternative treatments for their ailments.  For those who are wondering about the point and motivation behind this docuseries, I would suggest that it functions as effective pro-Alternative Treatment propaganda and that therefore, pro-Alternative Treatment propaganda is probably “the point” and the motive behind it.  If anyone cares to research this project to see who funded it, that would probably be a worthwhile endeavor as the only ones that come out looking good by the end are the alternative practitioners who have miraculously given most of these allegedly “crazy” patients their lives back, often despite themselves, although we never find out exactly how or why the treatments so consistently worked except via copious references to the “mind-body connection” and even the placebo effect.

Continue reading “Netflix Docu-series “Afflicted”. I Watched It So You Don’t Have To.”

Cheryl Went the Other Way. On The Path Not Taken.

Recently I met Cheryl, a member of my adopted community here in the Middle of Nowhere, Cannabis Central, USA.  Cheryl is a bit older than I am, used to be a writer of religious texts.  Even had one published before self-publishing was a thing.  A bona fide published writer.  Writers are a weird bunch (obviously) and Cheryl is certainly weird, and was probably a bit (way) off even before she got sick — like me, Cheryl is seriously chronically ill.  I haven’t asked about her diagnoses but like many chronically ill people and especially chronically ill women, she likely has more than one illness, and it is likely that at least one of her afflictions is an autoimmune disease.  As I am learning, these illnesses, for whatever reason, tend to travel in packs.  I personally only have one that I know of — Crohn’s disease — but since moving residences 2 weeks ago and finding myself unable to get out of bed much and wracked with head-to-toe pain and crippling fatigue ever since, I am once again wondering if I have another one although I have learned through reading other Crohn’s patients’ testimonies online that Crohn’s all by itself is enough to render anyone the barely-walking dead and that is indeed how I feel.  Cheryl, on the other hand, has been buried under her particular prison for years.

Continue reading “Cheryl Went the Other Way. On The Path Not Taken.”