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.”
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)”
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.”
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?”
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.”
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, 190 proof alcohol, and poison. The broken glass, alcohol 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.”
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.”