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”

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.

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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.”

Holy Shit Y’all. Morgellon’s Disease (Aka “Delusional Parasitosis”) is Actually Real. #gaslighting #fuckdoctors #killallmen

Whilst performing my daily catch-up with my favorite conspiratard sites, today I found this: recent peer-reviewed medical research indicating that so-called Morgellon’s disease is actually a real, physical ailment and not all in patients’ — usually female patients’ — heads.  I have had a slightly more than casual interest in Morgellon’s disease for at least a decade if not two, and I am seeing the year 2002 thrown around as the approximate date that reports of this confounding, untreatable and disabling medical condition first appeared in the United States.  People — usually female people — started presenting to their doctors for diagnosis and treatment of a condition comprised of skin lesions, often with strange “fibers” protruding from them or embedded in the unbroken skin or in the scabs, as well as maddening feelings of itching, crawling, burning etc. under or on their skin as if “bugs” were crawling there.  There were almost certainly additional complaints considering what Morgellon’s actually turned out to be — a tickbourne infection that is often comorbid with Lyme disease — but let’s leave it there for now.

Morgellon’s patients routinely brought in a collection of scabs and fibers to show their doctors, intending to be good patients and their own “advocates” to help the doctors do their job, which is the current advice given to particularly women in order to insure that they get the best medical treatment possible (and so that the women themselves as actors or co-actors on their own “care team” can take part or all of the blame when they are not effectively treated).  Whereupon the doctors proceeded to mock the women and their attempts to document and provide physical evidence of what was happening to them by referring to such evidence as “matchbox sign” because women allegedly brought the fibers and scabs with them in empty matchboxes.  Of course, matchbox sign was a euphemism for evidence of fraud and mental, not physical, disease.

Here is an example of “matchbox sign” where the woman brought her evidence in a folded piece of paper, and not an empty matchbox, but whatever right?  The point of inventing and naming matchbox sign was so that doctors could warn other doctors that the person sitting in front of them covered in lesions and in terrible, ongoing and relentless pain, cradling a sad bundle of phony evidence was crazy.  The point was obviously not to tell the truth or describe anything accurately or even neutrally, or in a way that was likely to get these women meaningful treatment or relief.

Continue reading “Holy Shit Y’all. Morgellon’s Disease (Aka “Delusional Parasitosis”) is Actually Real. #gaslighting #fuckdoctors #killallmen”

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.”

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”