Of All The Things I’ve Lost, I Miss My Mind The Most. Ft. Joker

I recently wrote on my Patreon about Dave, my new disability advocate who seemed like he was going to be helpful for once.  Where my previous advocate was good at bleating on endlessly about my alleged “rights” as a disabled person, wasting my time and energy listening to her while not actually helping me gain access to resources, my new advocate put on a seriously impressive show.  Because I don’t have a car and am generally too sick to walk or ride my bike more than a couple of blocks, and likely too sick to drive even if I had a car, he arranged to pick me up for our appointments and afterwards took me back home.

Because I no longer possess executive function and cannot consistently or reliably complete tasks that require it (read: the stuff corporate executives pay other people to do for them, particularly female people, namely secretaries, wives and others) this man filled out applications for me, doing some of them online, addressed and mailed the ones going out of town and hand-delivered the rest.  This was almost unbelievably (!) helpful and I felt cautiously optimistic that things might finally be on the right track: a track towards getting me the disability and need-based benefits I’m entitled to as a seriously ill person with a disabling incurable, progressive disease.

To wit, Social Security benefits, into which I have paid since I started working when I was 15 and which they will just give to me freely if I live long enough but for which I have to beg in order to receive now, and housing, food and cash assistance that will help me stay in my little apartment, run my small business and somewhat control my environment and my access to climate control/lights/running water/refrigeration/toilet etc. and privacy and relative peace in which to care for my 2 adopted shelter cats and manage the daily pain and indignities of my disabling autoimmune disease.

The online application for SSD was returned to me in hardcopy to review, sign and return.  lol.  Along with a notice that if I want to also apply for SSI, the “other” form of disability-based benefits that’s basically exactly the same as SSD and as far as I know requires mostly the same information sent to the same place, I had to do a separate application for that.  lol.  The application for food and cash assistance was “never received” by social services, according to social services, even though Dave hand-delivered it and watched them time/date stamp it himself.  lol.

Continue reading “Of All The Things I’ve Lost, I Miss My Mind The Most. Ft. Joker”

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

nurse3
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”

More Evidence of Autoimmunity? Surgery “Complications” and Delayed Healing from Medicalized Trauma

This is mommy vlogger Bonnie Hoellein.  I have written about this woman before after both she and her sister were constantly vlogging about crapping themselves in public and I wondered aloud if one or both of them suffer from autoimmune conditions, specifically inflammatory bowel disease including ulcerative colitis or the hideous, disabling disease I suffer from, Crohn’s disease.

In the last year or so, Bonnie has had at least 2 rounds of cosmetic surgeries to correct various things she didn’t like about her body.  Both times, she suffered horrific complications from the surgery including delayed healing, infections, and what her husband has described as being at “death’s door.”  Based on my research this woman’s surgical complications and delayed healing from medicalized trauma is more evidence that she probably has an undiagnosed (or even a diagnosed yet publicly undisclosed) autoimmune condition.

Whether or not she knows she is ill, this woman — like a lot of women surely — keeps putting her health and life in danger by undergoing elective surgeries.  The medical research indicates that autoimmune patients do indeed suffer from delayed and complicated wound healing:

Continue reading “More Evidence of Autoimmunity? Surgery “Complications” and Delayed Healing from Medicalized Trauma”

Welcome Mumsnutters!

The Mumsnet community has found this blog and are intelligently discussing the extensive content largely insulting and degrading me, personally, over my previous antinatalist posts — 2 entire posts out of nearly 100 comprising this project which is about surviving (and not surviving) as a chronically ill female in end-stage capitalism and patriarchy.  I suppose the Mums’ days aren’t full up enough what with the extreme demands of catering to their fuck trophies and future soldiers, rapists and victims, otherwise known as children under the same global system, and asking each other whether they are “being unreasonable” for wanting to be regarded as human beings by their male owners.

The Mums at Mumset also believe that talking to the men at Mumset — the Duds, I guess? — about feminism is a good use of their time.  The Mum who started this discussion also apparently thinks it’s just duckie to ask impregnators (and the impregnated) what they think about antinatalism, as if the strong bias towards natalism on Mumsnet and in a global capitalist patriarchy in general isn’t obvious.  Yes the Mums and Duds on Mumsnet seem to think that natalists and pro-natalists are the endangered cognitive minority in need of protection from the handful of antinatalists that exist on the internet and who do not appear to exist anywhere in real life because they and the antinatalist perspective are routinely and systematically silenced.

Continue reading “Welcome Mumsnutters!”

8th Anniversary of Fukushima Nuclear Disaster. A 3/11 Post. PS. Radiation Causes Inflammation and Autoimmune Disease.

Today is the 8th anniversary of the nuclear disaster at Fukushima Daiichi nuclear power plant in Japan.  On this day 8 years ago — 3/11/11 — Japan experienced a 9.1 earthquake and resulting tsunami that destroyed a large portion of its eastern seaboard and caused at least 4 nuclear reactors to melt down, irradiating the facility and surrounding landscape with nuclear fuel.  There were multiple detonations at the site in the following days which spewed nuclear fuel rods into the air, water and soil.  The contamination of the Pacific ocean as well as the air at the coastline of Japan quickly spread around the world particularly the northern hemisphere.  Obviously, the Hawaiian islands and the west coast of North America including Canada, the United States and Mexico were hit soonest and hardest. This official model of the path of the contamination plume is taken from NOAA’s website here.  NOAA is the National Oceanic and Atmospheric Administration (the US government).  Of course, since the nuclear material has yet to be effectively contained on site and likely never will be, the plume coming out of Japan has never stopped.  It has been an ongoing circulating plume starting anew and aggregating every single day via ocean currents and the atmospheric jetstream for 8 years by now.

Most people and especially most sick people do not have the energy or even the cognition needed to thoroughly research this event and to come to rational conclusions about it including the potential and actual effects on our health and lives.  There is also an active and lavishly funded propaganda campaign that’s been running on us in full force since the event intended to cover up both its occurrence in the first place and its completely predictable effects on the environment and in turn on our planet’s biomass (read: food, pets and ourselves) in the second.  So there’s that.

Continue reading “8th Anniversary of Fukushima Nuclear Disaster. A 3/11 Post. PS. Radiation Causes Inflammation and Autoimmune Disease.”

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)”

Crohn’s Disease is a Terminal Illness. Coming to Terms.

After researching this disease for going on 6 years now, I believe I have come to a rational conclusion about Crohn’s disease which is that it is not a so-called incurable progressive disease but a fatal one: based on all the evidence including anecdotal evidence from patients themselves I now believe that Crohn’s disease is a terminal illness.  I have more or less concluded that before but for some reason I hadn’t yet come to terms with it.  It’s not easy to come to terms with something like that but not because I suffer from what is almost certainly going to cause my untimely death but because everyone, and I mean absolutely everyone is lying their asses off about Crohn’s disease including how “treatable” it is, what kind of quality of life Crohn’s patients can reasonably expect, how predictably disabling it is and why, and how it’s probably going to end.

But before we get to the end it’s important to start at the beginning and admit what Crohn’s disease is at base: Crohn’s patients, including myself, have to medicate in order to eat.  And that is serious, very serious indeed.  If there is anything that is any less compatible with life than a disease that prevents the sick person from eating I can’t think of it.  A disease that prevented the sick person from breathing wouldn’t be any less compatible with life than Crohn’s is, it would just be quicker.

Continue reading “Crohn’s Disease is a Terminal Illness. Coming to Terms.”

Medically Futile Care as Ritual. Part II. The Political Intent and Effect of Flogging Corpses, Framing Zombification as “Life Support” Etc. What’s Going On?

In my last post I wrote about an article published in a British medical journal that admitted that medically futile care — care that is not expected to increase a sick or dying patient’s health or prolong their life — has ritualistic intent and effect on the population at large.  I did not pay to access the full article and the abstract did not detail the ritualistic intent/effect so I was left to surmise for myself what the intent and effects are on society as a whole when Western medicine in particular flogs corpses with no reasonable chance of being revived; prolongs the dying process with aggressive and violent transplants and surgeries, resuscitation attempts and so-called “life support” including intravenous nutrition and hydration, mechanical breathing and filtration and the like; artificially delivers and maintains genetically or congenitally nonviable infants instead of letting them die naturally and so on.

I have observed previously that Western medicine attempting to treat untreatable, incurable and progressive disease is also ritualistic and does not benefit the patient except to function as a means of compliance and confession where sick people, especially sick women, are expected to confess their sins of and accept a flogging for being failed producers/consumers under capitalism and patriarchy.  Thus I would include such ineffective care under the heading of ritualistic medically futile care although the article I was responding to did not address or include that type of futility.  As a radical feminist I reject patriarchal rituals on their face and refuse to participate in them at all where and when I have a choice.  I have resisted using the capitalistic patriarchal (Western) medical doctor’s office as confessional, and refused to accept the flogging of brutal treatments that will not increase my overall quality of life or even reliably delay my death, instead choosing to treat my otherwise intractable pain and symptoms with medical cannabis.

So the existence of medically futile care as (capitalistic, patriarchal) ritual does not seem to be at issue, being freely admitted to by researchers who frame these rituals as having a positive effect on society — an effect which transcends the abuse and pain suffered by individual patients who are subjected to it but do not themselves directly benefit from it in terms of an increased quality or even quantity/length of life.  So what exactly is the specific ritualistic intent and effect on society at large of flogging corpses, creating and maintaining zombified “undead” and/or profoundly impaired patients on so-called life support, artificially reducing natural levels of infant mortality and so on?

Continue reading “Medically Futile Care as Ritual. Part II. The Political Intent and Effect of Flogging Corpses, Framing Zombification as “Life Support” Etc. What’s Going On?”

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.”

Autoimmune Women Are Supposed to Pay Doctors to Give Them AIDS. Are You Fucking Kidding Me.

Remember when “they” were saying that getting AIDS was like the worst thing ever?  I do — I am a child of the 80s afterall, and I was in 4th or 5th grade when the AIDS crisis hit and everyone was terrified of getting AIDS, children (children!) were being told to never have “unprotected” sex because of the AIDS, early on we were being told not to use public drinking fountains and to ostracize children with AIDS so as not to get AIDS ourselves.  Remember Ryan White?  I do!  I didn’t even have to Google to find his name, 40 years later I still remember his name and his story by heart, he was from my state and a few years older than I was.  He scared the shit out of everyone because he wasn’t doing anything “wrong” when he contracted AIDS like having the unprotected (or gay) sex.  That poor soul got it from a medical procedure, in his case, a blood transfusion for hemophilia.  Tragic.

Soon it became passé for anyone to trouble themselves with “how” anyone contracted AIDS — AIDS patients deserved our compassion, our respect, our acceptance of their physical and mental decline and resulting disability, regardless of how they got it.  Remember Ali Gertz?  I do.  She was a straight, affluent, white female and she got HIV and developed AIDS from a single sexual encounter with a man.  Of course, the man was bisexual and almost certainly got it from another man but by then it ostensibly didn’t matter…unless a woman gave her baby AIDS, then of course the woman was the Devil.  AIDS didn’t discriminate, AIDS was a horrible, painful, untreatable disease, a death sentence that no one deserved…except mothers who gave their babies AIDS, they deserved everything they got and more.  But deserved or not, no one was disputing that AIDS was serious, painfully serious, brutally final.

At some point “they” started saying no it’s not the AIDS specifically that’s the problem, it’s the HIV you don’t want, and that’s a virus so just use Universal Precautions and you should be fine!  Fairly recently they started saying it’s possible to “live with” HIV and never develop full-blown AIDS at all.  The message there appears to be that AIDS is actually what you don’t want afterall.  AIDS — Acquired Immuno Deficiency Syndrome — where your immune system becomes weakened, decimated and destroyed and you develop life-threatening opportunistic infections from bacteria, viruses, parasites, fungi, you get cancer (or more than one) and then need to be treated for the cancer(s), your quality of life plummets to zero and you can no longer work or play effectively, your friends and family have to care for you, even though there’s nothing long-term they can do for you, and you die painfully, skeletally, covered in sores and rashes, beyond spent, half out of your mind.  That’s the effects of the AIDS mind you — the HIV in and of itself appears to be relatively harmless except that it causes AIDS, and AIDS is still bad, very very bad, something unequivocally to be avoided.  Are we clear on that?  Good.

Enter “biologics,” the class of “treatment” — read Big Pharma poison — approved for managing autoimmune diseases like Multiple Sclerosis (MS), Rheumatoid Arthritis (RA) Crohn’s disease and more.  The so-called “side effect” of biologics — read iatrogenic illness and injury, meaning additional illness and injury caused by medical attention and treatment itself — is that biologics “change how your immune system works.”  That obfuscating bit of Big Pharma propaganda brought to you by the literal pricks at Johns Hopkins Arthritis Center.  Of course, “change” here means “destroy” and going from having a functioning immune system to not having an immune system at all is certainly a change so they aren’t technically lying but WOW, just wow.

Continue reading “Autoimmune Women Are Supposed to Pay Doctors to Give Them AIDS. Are You Fucking Kidding Me.”

You Can’t “Outsmart” Trauma. That’s Actually Not How Trauma Works. Or, What Doesn’t Kill You Makes You Traumatized and Increasingly Unable to Function.

I’ve been thinking a lot about trauma lately as I contemplate my increasingly vulnerable and terrifying station as a chronically ill woman who will have to rely on the long-term care and concern of others if I am to survive.  For some reason I found this topic exceptionally difficult to write about in a coherent and meaningful way and in my experience as a somewhat seasoned social critic, that usually indicates that there is some thought-termination around the issue and that I am working my way through something that is not meant to be dissected and understood and that is probably the case here.  For whatever reason, this post seems like it just does not want to be written, and as a writer and a creative person I can and do respect that, so I am giving up on the idea of writing a proper post about it.  I have scrapped a dozen versions of this post and I’m glad they are gone.

But there is something that I — not my muse — would like to say about trauma, about women’s experience with trauma, how it affects us, and what little can probably be done about it.  But little is not nothing, and where there is anything women can do to avoid trauma and to avoid becoming traumatized, women seriously need to do everything in their power to avoid it.  The effects of trauma on our long-term physical and mental well-being are just too serious to ignore and we cannot keep letting this happen to us; we are told that “what does not kill us makes us stronger” but this is a reversal, and a lie.  And besides, there are probably worse things than death and it seems to me like trauma may be one of those things.  In reality, the constant traumas women experience that stop short of killing us only make us weaker, sicker, and less able to function.  For women, the effect of constant trauma is that we are neither here nor there — we end up the walking dead.

Continue reading “You Can’t “Outsmart” Trauma. That’s Actually Not How Trauma Works. Or, What Doesn’t Kill You Makes You Traumatized and Increasingly Unable to Function.”

Swallowing “Professional Middle Class” Hook, Line & Sinker. Academic Tenure Can Be Revoked Due to Illness (and Other Reasons).

This is Ruby.  Ruby is a mommy vlogger with over a million subscribers, is the sister of Bonnie and Ellie, and like her sisters is also a generational member of the LDS religious cult (Latter Day Saints, aka Mormons).  Ruby has a family including 6 young children and a husband.  Ruby and her husband have spent their entire relationship getting Mr. Ruby educated with a Master’s and a Ph.D and Mr. Ruby has used his education to get a teaching job which he has held for the last several years.  Mr. Ruby just found out he got tenure which means he can never be fired* from his job.  According to Ruby’s understanding of the situation, this means that they will always have money and therefore that they will always have security.  That they will always have necessary and discretionary income.  That they will always have a home.  Ruby is so, so, so very happy about that.

Judging by her life and lifestyle as a married middle class woman with children, Ruby has clearly bought into one myth, the myth of the middle class mother and wife who thinks that having a successful husband is a guarantee of current and future security.  She assumes that he will never leave, or decide to spend his money recklessly or on other people or in ways of which Ruby herself does not approve.  It is possible that their shared religion and community as LDS may function as a social glue that holds this couple together and keeps Mr. Ruby’s money in the shared account (and his dick in his pants) so it’s possible that Ruby is a bit smarter than most women who do the same thing but who don’t have anything holding their marriage together besides “attraction” or “love” or shared interests or shared parenting or other such fleeting things.  And to be fair, Ruby might be right about Mr. Ruby and Mr. Ruby might be the greatest guy or even the greatest person in the entire world and their plan to be secure for the rest of their life based on his job might be reasonable under certain circumstances.

But how realistic is it really, when the future security they have both worked so hard for is completely dependent on Mr. Ruby’s physical and mental ability to work, especially now where we are experiencing the collapse of our ecosystem and where so many people are becoming seriously chronically ill?  What if Mr. Ruby already has a latent condition of which he is not yet aware including the increasing likelihood that any of us has a confounding autoimmune disease that will be resistant to treatment, both incurable and progressive, and where the conventional treatments are known to make autoimmune patients worse and even more disabled than they were before?

*Tenure can be revoked y’all.  And not just because of disability either.

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