A Note to the Turmeric and Yoga Crowd. TL;DR. You Aren’t That Sick.

Let me preface this note by saying that I was able to somewhat control my Crohn’s symptoms for 30 fucking years before I got sick.  And when I say “sick” I mean sick-sick.  The kind that is undeniably disabling, mostly doesn’t respond to treatment and never goes away.

Because I have explored and/or experienced these things firsthand, I know all about prescription and over the counter medication including oral, topical and other traditional medications, as well as Chinese medicine; homeopathy; reflexology; chiropractic; Ayurveda; herbal remedies and tonics; restrictive diets and enteral feeds; probiotics and fermented foods; vitamins, minerals and other supplements; trendy exercise programs and basic ones too; every form of detox, cleanse, fast and purge imaginable (and then some); acupuncture/acupressure/cupping/spooning; aromatherapy; crystal and precious metals therapies; therapeutic massage; meditation and relaxation practices; binaural beats and sound therapy; infrared therapy; Reiki and other energy work; atheist-prayer; talk therapy and otherwise working out your issues; knock-you-down-to-build-you-back-up emotional bootcamps; cutting “toxic people” and things out of your life; letting go and letting God; and thinking about something else for awhile.  Did I miss anything?  Jesus.

I’ve done it all and I’ve been doing it all for a very long time.  This is not my first day, or year, or decade with alternative therapies: I was avoiding nightshades while some of you were still eating French fries with your Happy Meals.  Think about that shit a minute.  I’ve been doing every alternative therapy imaginable since before many of you were even born.  And certainly before any of this shit became cool, or easily accessible, or at all normalized and/or mainstream. 

Potatoes (and therefore French fries) are a nightshade BTW, for anyone who doesn’t know.  And nightshades are known to be inflammatory.  I recently had an old family friend clue me into the harm nightshades can cause.  I recall trying to clue people into that in 1992 when I first learned about it but whatever right?  He figured it out 30 years later, after being in pain for decades and after having both knees replaced.  Good job dude.  Seriously, well fucking done.  These are the people, and the kinds of people, who are giving me advice.  It is, in a word, maddening.

I’ve also been keeping up with the research.  I research Crohn’s and other medical conditions weekly if not daily because I am interested in it and interested in the social commentary around it.  Where there is none, or nothing interesting, I create social commentary about it on this blog.  I know about fecal transplants and have written about it here, I know about so-called “Functional Medicine” and have written about that here, I know about stem-cell therapy (shudder) and Ketamine therapy.  I know that there is a potential gene therapy in the pipeline which I will probably never get to try.  Because these things cost money and are gatekept and are otherwise inaccessible and/or unsustainable over time.  We have been over this.  Even if these things work, there are reasons besides not knowing about it that prevent people from accessing them long term or at all.  Have you heard of?  Have you tried?  Yes.  Probably.  Seriously, stop wasting my fucking time.*

Continue reading “A Note to the Turmeric and Yoga Crowd. TL;DR. You Aren’t That Sick.”

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

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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.”

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!”