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”

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.

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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.”