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)”

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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?”

Running Through Fire With an Ostomy Bag. Homeless Without Humira. Can You Imagine?

Yet again I am contemplating and empathizing with the plight of the seriously chronically ill in the midst of an ongoing natural disaster, this time raging wildfires in Northern and Southern California.  This morning I read the story of a woman who had given birth via C-section in the city of Paradise which that very day ended up burnt to the ground.  She was still on an IV drip with a spanking-fresh surgical wound and an hours-old newborn, unable to even walk on her own, and was forced to catch a ride out of dodge with a nonmedical hospital worker to whom she decreed: if the fire overtakes this car, take my baby and run.  Gamely, the nonmedical hospital worker hung this woman’s IV bag from the rearview mirror and in just 9 short hours they had made the 20 minute drive to the next town to another hospital where, I presume, she is continuing her recovery from what is, of course, major (and probably elective) surgery and on top of that, likely major psychological trauma from both the surgery and the fire.

The home she had shared with her husband in Paradise has been reduced to its chimney as a large portion of the state continues to burn throwing hundreds of thousands of lives into prolonged chaos.  Some 10,000 homes have burned and many more people than that have been left homeless, camping out in tents in the parking lot of the local Walmart (if they are lucky enough to even have a tent) living in cars (unless theirs was lost or left behind) or renting a hotel room if they can locate, access and afford one — every room within 100 miles is currently occupied by displaced fire victims and other evacuees.

As a climate refugee myself, before I became a cannabis refugee, I was left homeless after losing my apartment in Hurricane Sandy and I can vividly imagine and feel these evacuees’ pain, stress and grief as they attempt to survive the “aftermath” of an ongoing regional disaster where all has been lost, damaged or destroyed, and that includes all infrastructure, including medical infrastructure.  While the experience of being a climate (or other) refugee in the best of circumstances is daunting, traumatizing and horrific, what are seriously ill people expected to do on top of everything else when they are also tied to the Western medical system either temporarily or for life because they have submitted to alterations/interventions like surgeries, ostomies, picc lines and the like, but where medical goods and services (including ostomy supplies and even intravenous nutrition) become unavailable due to an ongoing natural disaster?  What of those who are dependent on Big Pharma drugs to manage their symptoms or who are addicted to prescription painkillers and psych meds but who, due to circumstances beyond their control, are unable to refill their prescriptions and start to experience dangerous and even life-threatening disease relapses and clinical withdrawal?

Continue reading “Running Through Fire With an Ostomy Bag. Homeless Without Humira. Can You Imagine?”

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, 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.”

Yes Pot Works. Yes It’s Been Around a Long Time. Enough with the Red Herrings. Also, “Education” of the Oppressor is Never A Solution to Political Oppression.

I wouldn’t call these vids a waste of time exactly, if you need something educational to listen to while doing the dishes or commuting or whatever.  But for those of us who already are educated on this issue, and for those of us who understand that education is not, in fact, a reliable road to any kind of political revolution (because everything they do to us is deliberate, meaning they know what they are doing) this kind of material is very boring and rings very hollow.  Doesn’t it?  The assumption that education is the key to solving the problem of cannabis prohibition and restriction is prevalent in every pro-cannabis dialog I have ever heard, and this tells me loud and clear that most people do not in fact realize that what we are dealing with is political oppression and that they think it’s something else entirely.  And I have no idea how to remedy that.

Continue reading “Yes Pot Works. Yes It’s Been Around a Long Time. Enough with the Red Herrings. Also, “Education” of the Oppressor is Never A Solution to Political Oppression.”

Please Stay off the Astroturf! Do Corporate Crohn’s and Cannabis Blogs Bury Independent Media?

When I was first creating and launching this project, I researched what was already out there with regard to Crohn’s and cannabis blogs and I found that there are easily hundreds of thousands of each and that they are heavily corporate sponsored.  Big Pharma sponsors (or creates) Crohn’s and other disease and “health” related blogs in order to push their corporate propaganda, in this case, the propaganda that Big Pharma voodoo is effective and easily, completely and permanently treats Crohn’s disease.  But patients know better, and if you want to hear their voices you have to dig pretty deep, beyond the heavily promoted fake astroturf and down to the grassroots — grassroots meaning the voice of the truly independent media, regular people who are telling the truth about their experiences because they have no incentive to lie.

These “real” Crohn’s patient stories are only found on people’s independent personal channels, blogs and vlogs and are not sponsored and are not part of a larger “project” on Crohn’s disease, IBD, healthcare or alternative healthcare, or the like.  The Crohn’s project channels are tricky because they seem to be hosting the stories of “real patients” (TM) but one cannot help but notice that they speak exclusively positively about their disease, their conventional treatments and their lives as sick people and reliably downplay the negatives, such as framing iatrogenic illnesses and injuries caused by the treatments themselves as “hiccups” and the various surgeries, procedures and complications they have anyway despite their allegedly effective conventional treatment as just #crohnslife and you will find those kinds of stories on YouTube channels with names like: Living with Crohn’s Disease.  Crohn’s and Colitis UK.  Real Life Stories.  Life with IBD.  Avoid those and anything similar to those like the corporate-sponsored astroturf they are.

Continue reading “Please Stay off the Astroturf! Do Corporate Crohn’s and Cannabis Blogs Bury Independent Media?”

How Sick is Sick? Why “Just Wear a Diaper” is Not Good Advice.

Just wear a diaper.  This was the response of my now ex-boyfriend when I told him how sick I was due to my Crohn’s disease, that I was unable to travel, and that if I was ever going to leave this cannabis legal state for another more affordable one I would need help with literally everything that entailed, up to and including supporting me with physical caretaking for the duration of the trip and likely continuing once I got there.  Before I started to feel significantly better, about a year and a half after beginning treatment with medical cannabis, I was extremely, extremely ill, more ill than I had ever been in my life, sicker than I ever thought possible, and so sick I actually thought I would die.  I hadn’t slept well if at all in literally years by then, I had been unable to eat or digest food without extreme physical distress for the same amount of time, and had lost significant weight.  But more importantly than weight, sleep or nutrition, every last drop of my former vitality was gone and no matter what I did or didn’t do, including 2 full years of compliance, dutifully taking Western medical treatments that were actually making me worse, nothing helped to quash the hellish, unrelenting pain and symptoms of my serious chronic illness.  I was absolutely circling the drain.

Before this happened to me I had no idea it was even possible to be that sick.  How sick was I?  Well, I was so sick that eating food put me in severe distress, so much that not eating at all was preferable, even if I didn’t eat for days, and even if the reason I didn’t eat for days was because I had the flu.  Having the flu and not being able to eat for days actually made me feel better than I usually felt because all food made me extremely, extremely ill including severe unrelenting bloating, nausea, fevers, full body and joint pain, crippling abdominal pain, gut spasms, urgency and diarrhea.  I felt better with a full-blown flu than I did on a normal Crohn’s day.

Remember last time you had the flu?  Try.  Try to remember how badly it sucked and how long it lasted, how your whole body hurt inside and out, how you were cognitively slowed if not downright impaired, how you had a massive fever and a crippling headache, how difficult if not impossible it was to do everyday tasks like driving, conducting telephone or in-person business like making and getting to an appointment or getting prescriptions filled, how hard it was to work a full day (or how hard it was to even move) how you lost your appetite completely, how you shit and/or puked your guts out if you even tried to eat or drink.  As an un- and undertreated Crohn’s patient, having the flu and all it entails was actually bliss for me and better than I could ever hope for on a normal day because I couldn’t eat, and where food made me extremely, extremely ill.  In fact, if I hadn’t come down with the second-worst flu of my life 2 days before I was scheduled to travel across the country to legally treat my Crohn’s disease with medical cannabis, I may not have been able to make the trip at all.  That is how unbelievably sick I have been as a Crohn’s patient, but I have found that it was and is impossible to get anyone to understand it if they have not experienced it themselves, and that generally-well people just do not get what being seriously or chronically ill is really like and apparently it’s impossible to explain it to them.

So why is “just wear a diaper” not good advice to someone who is chronically, incurably and progressively ill, basically incontinent and unable to predict when, where, how frequently etc. they will have to “use the toilet” whether or not there is actually a toilet around?  Because diapers aren’t meant for sick people, that’s why, and diapers do not make someone who is extremely ill well again.  They just don’t and they just can’t.  Believe it or don’t, there are limits to what diapers are able to do, you see, and it has everything to do with what diapers were (and were not) designed to do in the first place.

Babies shitting into diapers aren’t sick, elderly people doing the same thing aren’t sick.  Get it?  They do not have crippling pain that accompanies their often unpredictable need to shit, they do not have to puke at the same time they are shitting, they do not have to figure out how to lay down and shit at the same time — or do all of this while puking — because they are too ill to sit up and shit or to sit up to shit-while-puking.  If you do not have Crohn’s disease yourself, it is likely that you have never considered that it was even possible to be this sick just like I didn’t know until it happened to me.  But hearing this kind of fuckwittery — like “just wear a diaper!” — from people who are supposed to care about you is not helpful.  Please read on if you do not wish to seriously hurt someone you are supposed to care about but who has, unfortunately, fallen seriously chronically ill.

Continue reading “How Sick is Sick? Why “Just Wear a Diaper” is Not Good Advice.”