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.*

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.

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.

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

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.

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

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.

Now That’s Some Serious Chronic Fatigue. Spoon Theory 2.0? (Patreon Link Within)

Many chronically ill people eventually learn about the “Spoon Theory” of chronic fatigue, which is basically a way to explain to healthy people what it’s like when you no longer possess (or never had) virtually unlimited mental and physical energy to do what you want.  Because it’s always the responsibility of the weakest and sickest to explain ourselves to healthy people innit.  A person’s spoons are a visual representation of their physical and mental energy reserves for the day, where a physical or mental activity “costs” one or more spoons to perform and when the spoons are gone the sick person has no choice but to stop acting and rest.  With adequate rest and recovery time, hopefully their spoon reserves will replenish by the next day but that is not always the case.  Many days, seriously ill people may have no spoons at all.

Spoon Theory was described and named by a chronically ill woman and it is pretty accurate in my own experience.  For the first time in my life, after putting myself through law school, studying for and passing the bar exam, and then working more than full time in a stressful and demanding career in addition to a lifetime of “adulting” meaning maintaining a household and nurturing various parasitic males I no longer have anywhere near the energy I once had and can now barely get anything done, regardless of urgency or import.  It’s not a matter of how important anything is anymore, nor how badly I need to or want to do it.  I am not in control of that now and it is debilitating and terrifying.

Healthy people have no idea that’s even possible and they often refuse to believe it.  And that’s an example of ableism, or discrimination in policy and practice against disabled people and in favor of healthy people.  Young people seem acutely aware of the concept of spoons, chronic illness and ableism while older people seem to have not a clue; the implications of that are terrifying but I will leave that for another day.

I recently attempted to describe my own limitations to my mother, and even though as a nurse who claims to have rigorously studied the issues and thinks she knows everything there is to know about health, wellness and chronic illness (LOL) she had never even heard of “spoons” or spoon theory.  Considering that that information is literally everywhere if one only cares to look, her research skills get an F.  Her practical knowledge gets an F.  Empathy F.  Effort F.  Fucks given on behalf of the chronically ill F.  Fucks given about me and my new normal F.  Decent human being D+.  Maybe.  Maybe there’s hope, I think to myself, and at least a D+ is better than an F in that department, although the D+ is likely generous.  It’s a pretty important department and I like to think it matters but maybe it really doesn’t.  Maybe there is just no way that healthy people will ever understand or care what it’s like to be seriously chronically ill no matter how decent they are but I decide to try.

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.