The Welfare Gnome! It’s Like a Sock Gnome Except This One Can Actually Kill You. Ft. Joker (Again)

According to the internet, a “sock gnome” is a mythical creature that pilfers socks.  Presumably it lives in or around the dryer where you put an even number of socks in and get an odd number out.  Sometimes it gets tricksy and spits out an even number but the pairs don’t match (meaning it’s pilfered one from more than one pair) but the usual evidence that you’ve had a sock pilfered by a gnome is that there is one left over that doesn’t have a mate and the missing sock never reappears ever.  This is a real thing (if not a real gnome) and everyone knows what this means.

Well, there appears to be a similar creature that lives at Social Services and pilfers sick and poor people’s applications for welfare benefits.  Or something, idk.  I assume these creatures are related but maybe not since this gnome doesn’t play games: its goal seems to be to drive you insane before it literally kills you.  I wrote here before about an application for benefits that went missing, along with a half a dozen other boondoggles that have wasted my spoons and left me scrambling to repeat some administrative process I was barely able to complete survive the first time.

Because while a sick person’s literal inability to jump through bureaucratic hoops is actually the best evidence that someone is extremely ill, someone has decided that only those who are well enough to sing for their supper (or pursue benefits) deserve to eat, as it were.  The first application that went missing was for food stamps, while today I found out that my application to get on a 4 month waitlist to see a doctor went missing 2 months ago and has not been since heard from: although my disability advocate hand-delivered it, the application was never received.

Continue reading “The Welfare Gnome! It’s Like a Sock Gnome Except This One Can Actually Kill You. Ft. Joker (Again)”

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

nurse3
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”

Antiauthoritarianism: Illustration via Juxtaposition.

If the above vid is not the perfect illustration of concept I don’t know what is.  This is the most recent YouTube upload by Royalty Soaps, what used to be a one-woman soapmaking business that has grown over several years into something else.  The backstory here seems to be that at some point, the eldest yet still teenaged daughter in some freakishly large Quiverfull-type family consisting of a mother, a father and a dozen(ish) Irish twins* started making soap and with the help and support of that family has become very successful and has now delegated some of her substantial duties to others.

As described in this vid, this woman’s business recently experienced an unexpected and frightening setback and she relied heavily on her family to correct the situation and save the day, which they did in spades.  They also had the time, energy, material resources and desire to throw her an Insta-worthy backyard 25th birthday party in the midst of this family project.  The party was beautiful and the familial love and care given and received there, as documented in this vid…well watch it for yourself and see what you think.  For me, the experience of watching this was somewhat complicated.  I enjoyed it, was moved by it but it made me deeply uncomfortable and thinky…and hungry for salad, cake and sun tea.

What was so deeply disturbing to me about this footage was the backdrop against which it was shot and I’m not referring to her (albeit somewhat disturbing) home state of Texas, or a photo prop.  The backdrop here, as it is most everywhere, is the social context of capitalism and patriarchy and what that means is that, in order for this situation and this footage to exist, this woman has had to comply, comply, comply in order to reap what must be conditional rewards of love; affection; physical presence and caretaking; emotional care and concern; and finally, material things that, under the current system, really only money can buy.  Doesn’t it?  In her case, she has had to buy into the religious, political and social traditions of her family including the patriarchal authority of her parents, the heterosexual and mommy mandates and more in order to have what she has.  Of course, the traditions of her family mirror the traditions of her culture more or less exactly.

Luckily for her there does not seem to be any obvious conflict between her own values, conscience etc. and that of her family (or culture) but what if there was?  What would happen to her if she woke up one day with, say, environmental concerns implicating overpopulation and natalism, or economic concerns implicating capitalism and the money system and the ethics of making and selling soap (or doing anything) for profit?  What if, God forbid, this Quiverfull (or whatever) daughter woke up one day with feminist concerns which implicate all of that plus the destablization of the patriarchal authority of her father/parents, her husband, her church and the State?

Continue reading “Antiauthoritarianism: Illustration via Juxtaposition.”

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!”

The Diagnostics Racket. Ft. Scooby Doo.

This needn’t be a long post but I was just thinking about how disingenuous it is to break up bodies into “parts” and “systems” in order to diagnose what’s wrong with sick people as if it matters.  Sick is sick, and if anyone were being honest about any of this we would all admit that what sick people need, more or less universally, is marijuana and a clean, safe environment in which to convalesce and to maybe or maybe not “recover.”  Some things have no cure.  We know that.

Marijuana works for everything, for every “part” and every “system” (the body/mind as a whole IOW) and this has been known by humans for thousands of years.  Playing dumb and worse, subjecting sick humans to inherently necrophilic compartmentalization in any form in order to heal them is not going to work.  Stabbing sick people in the bone to see if they have leukemia — when we already know that marijuana is a the safe and effective treatment both for leukemia and things that mimic leukemia — is simply cruelty.  Get it?  Subjecting anyone’s allegedly loved one to a bone-stabbing for no good reason — and I just showed that there isn’t a good reason — is cruelty.  And friends and family (and doctors obvs) should be ashamed for doing this but when it comes to the diagnostic racket people seem pretty shameless.  It frankly disgusts me.

You all just want to play dumb, acting like marijuana and a clean, safe place to convalesce isn’t clearly, obviously and universally what’s needed in every case.  Your ignorance is cartoonish.  You sound exactly like Scooby Doo in my exhausted fed up and terminally inflamed brain.

Sick person: I need real medicine that works in the first place and to stop being made worse in the second.

Everyone:  RUUUUTTTTT?  Rye ron’t ret it!

Sick person: The things I need cost money and I am unable to earn money anymore because sick.

Everyone: RUUUUTTTTTT?  Rye ron’t rav renny runny!*

* Obviously I understand that not everyone has money.  But one, a lot of people have a lot more money than they are willing to admit, they just have other priorities.  Also, there is a whole conversation to be had around the fact that sick people aren’t getting what they need, and that conversation needn’t center the finances of one person or one family.  If you aren’t the one who’s sick the conversation should NEVER center on you, it’s not about you.  RUUUUTTTTT?  Yeah.

Comments Open.

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)”

The Absurdity of the Euthanasia Discussion in the Absence of Effective Medicine and Social Support for the Seriously Chronically Ill.

I cannot tell you how absurd it is to be seeking euthanasia as the final end to this awful Crohn’s journey when I’m not suicidal and I don’t want to die.  What I do want, all of which is illustrated brilliantly in this clip, is 1. effective medical treatment for my disease, or failing that, consistent access to effective pain and symptom relief, in my case medical marijuana which has been used successfully for thousands of years to ease specifically gut ailments and which use is supported in contemporary peer-reviewed medical literature particularly for Crohn’s; 2. social support with fulfilling basic tasks and the activities of daily living like shopping, cleaning, cooking and the like; and 3. to be relieved of external constraints that make existing as a chronically ill person a living fucking hell and a consistent nightmare, which constraints have nothing to do with being ill and everything to do with being an oppressed person and failed consumer/producer under capitalism and patriarchy.  Constraints like poverty.  Fear of (and actual) male violence.  Disability-based (and all) discrimination.  Things like that.

But I can’t have any of those things — effective medical treatment, social support, and freedom from oppression — because under the current system those things don’t actually exist so the easiest thing for everyone would be for me to simply disappear or to have never been born in the first place.  Failing that we have euthanasia otherwise known as assisted dying or medically assisted suicide.  Of course, poor and other unsupported “euthanasia candidates” — who likely don’t have $12,000 and the good health and social support needed to have their efforts rubber stamped/make it official — just know and experience this process as good old-fashioned suicide.  Who knows what Chris Rock really thinks about euthanasia for seriously ill and dying people but he’s not wrong to see the absurdity in it, at least under the current system.

Continue reading “The Absurdity of the Euthanasia Discussion in the Absence of Effective Medicine and Social Support for the Seriously Chronically Ill.”

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.”

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?

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?”

Happy New Year! 2018 Year In Review (Chronically Ill Version). Ft. Cannabis Refugee, Esq. Meta Discussion.

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.”

Aaaaaannnndddddd…We’re Back to Grateful. I Literally Forgot What a Full-Blown Crohn’s Flare Was Like.

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, molten lava, and poison.  The broken glass, molten lava 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.

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