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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Our Mothers Want Us Dead. Another Antinatalist Post.

I have spoken at length with other women who, throughout their lives, have been abused, neglected, torn/worn down, palmed off and otherwise unsupported by their mothers to the point that the only logical outcome of this treatment would be our untimely deaths, either from the abuse/neglect itself, from the completely predictable male violence and neglect we are subjected to when we choose heterosexual relations/relationships for survival, or via suicide.  The obvious fact that motherhood is the end result of misogyny, specifically female reproductive abuse including unwanted or “survival” sex and rape, makes this non-attachment to children foreseeable and ordinary and insures that it will never be discussed as if it were either.

I have written here before about what “family” means to me, and from where I’ve always stood, family appears to be the source of overwhelming grief, torture, humiliation, powerlessness and pain including medicalized torture, humiliation and pain if you were “privileged” enough to be born to Western medical professionals like I was.  (Of course, the tools of any trade and any patriarchal conditioning can and will be used by parents to torture children, especially girls.)  Family, if we are honest, is the source and location of almost all of girls’ and women’s suffering including being subjected to abusive male “sex” practices that only lead to one place for female-bodied people: pregnancy and motherhood.  Motherhood is a biological function exactly as romantic as shitting if we are honest about it and children are treated like shit for exactly that reason including grown “children” who were never part of the families they were born into in any human sense.  More like a shit-on-the-bottom-of-your-shoe sense.  Oops.  For more forward-thinking (or adaptable) folk perhaps in a compost-sense: a useful object that better prove to be useful or else.

A goodly portion of us were not wanted by our mothers and common sense bears that out; most of us know how difficult it is to have consequence-free recreational intercourse (or rape) and we activate against pregnancy for decades and not just because of the “timing” although for some that may be part of it.  For anyone who is still unsure, the ways our mothers often treat us make it clear that we were unwanted by her, or at least that we are unwanted now.  Although I shouldn’t be I am taken aback every time I see chronically ill people commenting in groups and on message boards how they are treated almost universally poorly by their own families — including by their own mothers — now that they are sick.  The last time I spoke with my own mother she blamed and dismissed me for being sick and told me I should move to a bigger city “because they have nicer homeless shelters there.”

Why I should be homeless when my mother and my entire family all own their own homes (well, the bank owns them) was not addressed, nor was the fact that my mother only “owns” her home in the first place because she was treated generously (albeit begrudgingly) when she divorced a man who could well afford it.  The fact that she is currently sheltered has nothing to do with her own responsibility, good choices or inherent worth even though she pretends, or may even believe, that it does.  But I digress.

Continue reading “Our Mothers Want Us Dead. Another Antinatalist Post.”

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, 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.”

1 Million Under Evacuation Orders Ahead of Hurricane Flo. How Many of Those are Chronically Ill?

Once again, I am really feeling for the people in harm’s way due to a natural disaster that’s sure to render thousands homeless.  Hurricane Florence could be a category 3 or 4 when it comes ashore on the central to southeast US coast in the next couple of days and a million people are under evacuation orders to avoid risking their lives in the storm which is expected to produce devastating winds, up to 13 feet or more of storm surge, and 25 inches of rain.  After losing my apartment in Hurricane Sandy and having to swim out of my apartment building in chest deep water at midnight, and having to live through the aftermath on a devastated and destroyed island, I can attest to the extreme damage and long-term effects produced by hurricanes, tropical storms and widespread coastal flooding.  And Hurricane Flo is shaping up to be, potentially, a hell of a storm with winds and rain far worse than what Sandy offered as a category 1 and then a “mere” tropical storm by the time it made landfall in the northeastern United States.  The devastation that can reasonably be expected from Flo is, in a word, extreme.

Much like chronic illness it seems, unless and until someone has experienced this for themselves people are simply unable to imagine or comprehend the full effects of this kind of storm damage, like gasoline rationing and shortages (and outages), being rendered homeless or otherwise without power, clean water, heat or access to shopping, bathing, cooking and laundry facilities for weeks if not months at a time, and extreme widespread pollution and environmental contamination from the displaced contents of storm-damaged sewers, septic tanks and water treatment plants; gas stations and petroleum storage facilities; commercial and industrial parks; commercial agriculture and factory farms; hospitals and research facilities; cemeteries and bio-hazardous waste facilities; landfills and garbage dumps; hazardous including nuclear waste storage and disposal sites; and power plants including nuclear power plants and more.  Literally everything you can imagine, and many things you can’t, will become airborne, will seep into the soil and groundwater, or will end up floating in/on the floodwaters, leaving a toxic slick covering the landscape for miles once the filthy water recedes.

Continue reading “1 Million Under Evacuation Orders Ahead of Hurricane Flo. How Many of Those are Chronically Ill?”

The Colostrum Culmination. Because I’m Actually Not Worth It.

In the last 3+ years in my search for relief and healing of my Crohn’s disease with medical cannabis, I have also tried more supplements than I can probably remember or count.  In addition to possibly every cannabis product and delivery method available, I have tried various multivitamins, minerals, digestive enzymes and other products including chaga, shilajit, Himalayan pink salt, blackstrap molasses, powdered fruit and vegetable juice capsules, colloidal silver, melatonin, bee pollen, Manuka honey, lecithin, probiotics, and fermented organic foods including miso, raw Kombucha, raw apple cider vinegar and raw saeurkraut and fermented vegetables, all at significant out-of-pocket cost which have left me destitute.  I didn’t care if I spent every last dime I had on finding an alternative treatment that worked because as an un- and undertreated Crohn’s patient, my pain and symptoms were not responding to conventional care and the relentless agony of my raging autoimmune and digestive disease had become unbearable.  I was willing to try anything and everything if I thought it held any promise to heal me, or so I thought.

For 3 years of trial and error on medical cannabis and supplements, and 2 years of conventional treatment before that, I had been willing to try anything, absolutely anything if I thought there was any chance that I would finally “get better” and be able to return to my previous life, or to any life at all and this appears to be common amongst Crohn’s patients specifically.  I once read about a Crohn’s sufferer who was willing to try a “fecal transplant” but he misunderstood the directions (and the concept) and ended up drinking the infusion instead of inserting it rectally and I knew exactly how he felt — Crohn’s patients will literally drink someone else’s shit if they think they might find relief from their suffering.  That’s how unimaginably hellish Crohn’s disease is. In my own case, my last attempt at conventional treatment was to agree to take immunity-decimating infusions that would’ve left me susceptible to opportunistic infections, cancer and death (my attempt was thwarted when the doctors prescribing the treatment fired me once I was accepted for Medicaid which was probably a good thing and left me no choice but to move across the country to seek healing with medical cannabis).

The last and final supplement I tried was colostrum and I ordered it from Amazon without even fully knowing what it was, just that it was a “natural” supplement that some people on the internet said had helped them with their ailments and that the relief was immediate and substantial.  But once I started using the colostrum and the more I researched it and figured out what it really was, something inside of me said “enough.”

Continue reading “The Colostrum Culmination. Because I’m Actually Not Worth It.”

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.”