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.

Diarrhea, constipation (or both) go without saying while in this condition.  Did you know you can have diarrhea and constipation at the same time?  Because you can.  I learned about that when my brother was terminally ill after all his organs began to fail and his guts stopped working.  To illustrate, the constipation is like stalled city traffic and the diarrhea is like a seasoned (experienced, career) bike messenger.  It just goes around.  No offense intended to current, past or future career bike messengers, I’m just trying to create an image here and I’m too weary to try to come up with something less offensive and also less perfect because that’s pretty much exactly what it’s like.  If anyone can think of a better analogy (simile?) I hope they will tell me.

Anyway, as I was sitting in laying across my favorite chair and looking at my distended belly I thought to myself, wow, I am like completely disabled right now!  If someone came into my home uninvited I would probably just have to let them.  If I had to leave here in a hurry I couldn’t.  I’m grounded here, completely and totally helpless, in utter mind-scrambling agony, physically disabled, unable to move.  And I had forgotten that that’s what a full-blown Crohn’s flare is like for me — it’s not just about feeling sick (which I do all the time anyway) it’s not even about being stuck on or near a toilet (or having to shit laying down in the shower) it’s about being in severe physiological distress, unable to function on any level, unable to even move.  At that moment, time slowed down for me as I no longer had any hopes, thoughts, plans or ambitions even 5 minutes into the future.  The only thing that existed was me and my disabled body and I thought thank God I have access to medical marijuana.  That was the sum and substance of my intellectual existence just then, I had no personality, no future, no past, no fear, nothing but disabling immobility and pain that I had no choice but to medicate and medicate I did.

I remembered why I was here in the first place — here, 1000 miles away from my previous life and away from anyone who might reasonably care about or for me (or not) hunkered down in a cannabis-legal state, treating multiple times a day and doing what I had to do to survive and be any kind of a functioning human.  And I quickly remembered that for the 3 years I’ve been here, I’ve been on borrowed time.  Before I left my previous home, having suffered that way — in a more or less constant full-blown flare — for 2 years by then, the only relief provided by Big Pharma being inadequate, fleeting (or nil) I had begun to plot and plan my suicide.  Living with my basically-ex-by-then “boyfriend” and his mother, in a home much too small for the 3 of us, where one or both of them was always home and I was afforded no respect and no privacy, I planned to pick a fight with the boyfriend as a pretext to procuring and staying in a hotel room alone for several days.  There, I would (hopefully) have the privacy and time I needed to end my life.

Having taken stock of my resources I realized I would probably have to accomplish this through hanging or several self-inflicted stab wounds combined with possible drowning.  I didn’t and still don’t have access to pills which I regret immensely — soldiers and others are allotted cyanide pills for less but I had nothing like that and still don’t which is both unjust and terrifying (and I have a disease of malabsorption anyway so would pills even work?).  I would have to be somewhat clever and accommodating depending on what the hotel room was like (bathtub or no?) and I would have to be lucky, and brave, and left undisturbed.  And I knew very well I could fail.

I thought, but I won’t get to pet and love on the mother-in-law’s cats anymore, I will never get to use handmade artisan soap again, I won’t put my feet into UGG slippers again — these were the things that kept me comforted and sane those last days.  And frankly I wasn’t quite ready to die just then and I was scared shitless I would fuck up my “attempt” (meaning, wholehearted sincere and justified effort) and fail.  So instead of continuing to plot my suicide I started planning my escape.  I ended up here knowing full well that I was on borrowed time: but moments away from suicide, I had literally no life, no future and no hope if I couldn’t treat the hellish, unrelenting pain and symptoms of un- or undertreated Crohn’s disease.  And as I have been reminded through this latest flare, I still don’t.  Instead of a life and hope for the future, I have a ticking time bomb inside of me that I can only somewhat control and only sometimes, I absolutely must control it the best I can for as long as I can (because Western medicine can’t) and there is absolutely nothing I can do about that.  Nothing.  And when there is nothing we can do, as some of us know too well, in that way we become free.

So for now I feel free — not free of consequences but free of decisionmaking power/responsibility, free of fear, regret or uncertainty, free of the burden and expenditure of trying to plan my escape or salvation from this isolated, insane hell in which I have made my home.  I don’t know how long this feeling will last but for now I no longer fear for my future because I know I don’t have one, not like healthy people envision that.  Literally all I can do now is to treat my pain and symptoms from one day to the next, knowing that at any time I can be struck down, immobile and disabled, where time will stop.  In a way I am back to where I started when I first got here and figured out how to finally, finally mitigate the raging pain and symptoms of this awful disease — grateful.  Just grateful.  For now, there is nothing else but that.

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

  1. So sorry to hear you’ve been suffering even more than usual, (or at all of course).
    Idk why I think that my experience is all that different from yours, when there’s so much similarity… even rolling around in bed, stupid stomach gurgling with excruciating gas that doesn’t want to come out normally. god, sometimes the smallest gas bubble can make me feel so sick,sweaty, and nauseated and the pressure causes so much pain it really is comparable to a broken rib or kidney stones, at least in my experience. I take prob 4 gasX pills a day, and it helps me a little. I also soak my feet above the ankles in a dishpan of epsom salts (magnesium) and warm water and it eases the arthritis and muscle cramping i get, also warms up my icy feet of death. Not sure how magnesium absorption would affect you tho, just mentioning what works for me.
    I am mostly grateful but I’m also pretty worried, I’m way overdue for a visit to the ER to be blown off for more than half a day with no real help, only more suffering. I keep telling myself I will somehow end my life quickly rather than go thru ER hell yet again but how if i’m in debilitating pain and busy in the bathroom. The only place for me to have a primary care dr it at a ghetto clinic that has no time or interest in a quiet girl with gastroparesis- they just send me back to the ER who tells me to follow up with primary care…. so yeah i haven’t been in two years? Fingers fucking crossed bc i haven’t been drinking much water or eating that great, and family and “friends” don’t really notice until things go drastically wrong. which is prob for the best, my absence really should be a relief to them after the initial shock. the biggest risk and worry is not getting it right and being even more crippled and dependent on uncaring family or institutionalized… so that’s fun. I’d really like to be feel free of fear and quit suffering and struggling, i guess i need to think more about persisting with no hope in a dying planet of mostly idiots or coming to grips with living in the moment…
    Thank you for writing this.

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  2. Hi Lady Love thanks for your comment! I’m sorry you’re feeling sick and scared. I am too normally, just when I got totally disabled there for a minute I was just glad I had something to treat it. When I first started having abdominal pains I thought it was kidney stones too. I hoped it wasn’t bc I had no insurance at the time to deal with them, but wow that would’ve been a walk in the park diagnosis compared to the one I actually got. I totally know what you mean about being afraid of just fucking yourself up and make everything worse. It’s my worst nightmare actually. I would love to “hire” someone to involve me in a hunting accident if it comes down to it but as you say, how to even get to the woods when you can’t leave the bathroom? Plus anyone who would agree to “hunting accident” me would probably have no qualms about keeping me as a rape slave in his basement instead. The nightmarish things we have to think about when all we want and need is relief. It’s just unbelievably horrific. I hope you can get some relief soon.

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  3. I should also mention something my GI told me before I was diagnosed with Crohn’s. If your intestines are not inflamed you will not even feel the gas inside them because it will just come out. Inflammation is why you can even feel it at all let alone writhing around in agony for hours like many Crohn’s patients do. And as we all know by now, chronic inflammation is an autoimmune (or immune mediated) issue. GasX does help but obviously it’s not going to cure an autoimmune disease. Now, I’m not sure how gas works with someone with gastroparesis and if inflammation is implicated there or not, or if the lack of paristalsis is the only problem there? I’m just relaying what he told me and he did not suspect me of having gastroparesis even tho my first complaint besides heartburn was bloating and trapped gas. I saw him for that 6 or 7 years before I saw him for what ended up being Crohn’s. At the time, I was able to somewhat control my symptoms with diet changes, the big one was going gluten free. That worked well for 6 years until it didn’t anymore and I could no longer control my symptoms at all no matter what I did.

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  4. Are you feeling at least a little better? Seeing as English is stupidly devoid of sweet terms of endearment that don’t sound sexual, I’ll contend with adding ‘ZAYKA’. It means ‘little hare’ in Russian :=) Stupidly sentimental but I don’t know how else to express my sympathy…Honestly my CFS feels like a breezy park stroll in comparison.

    Which brings me to the empathy component of your female HFA post. The so-called ‘diagnostic test on empathy’ within the ASD criteria actually doesn’t measure empathy at all. It measures the superficial EXPRESSION of empathy – like handholding & shoulder rubbing. Because there is no way that male beings (with or without HFA) can actually score anywhere near the human normal of female empathy even with ASD. Because if actually had as little sympathy as my low score on that damn test indicated – I’d read your post and…

    …actually I don’t even know how I’d feel without empathy because I’ve never been devoid of it except in brief numb (from trauma) moments! Would I just stroll on by with my day and think “Miserable little thing. Oh well. Lucky it’s not me!” I definitely wouldn’t be crying and feeling powerless that I can’t save every single woman like you, right? I’ve actually had to actively train myself out feeling any sympathy for anyone with a prostate. Because THEY clearly don’t feel it in return- as this world indicates.

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  5. Hi, yes the inflammation and GI symptoms have lessened a bit thankfully. The other symptoms, including extreme fatigue, remain. Thanks for asking. I’ve never been without empathy either of course. I’ve never taken an ASD test but I can explain a little about the apparent fact that I and others seem to “like” or need rules and structure or are “rigid” thinkers — this is a complete misunderstanding and as you say a superficial reading of what is actually happening, at least in my own case. I actually loathe rules and structure but I see other people “thriving” and getting away with shit that I would never imagine attempting and I simply want to know what I have to do to keep people off my ass and somehow to survive this shitshow. So, like, just tell me what I have to do! Right? Not so easy for women though is it? Since almost all the rules we have to follow (in addition to the written rules men have to follow) are actually unwritten and unsaid (but still aggressively enforced). Perhaps needing to know the rules is partly what drew me to practice law, and in fact my legal education ended up supporting my blogging/writing because I knew what I was legally able to get away with saying and what I would advise myself against saying publicly (whether or not I ended up deciding to say it anyway). As a female I am constantly being policed and the extreme fear of being formally punished could have easily silenced me if I didn’t know where the lines had been drawn in the sand but now I know. Now I can speak in public without fear that I will be arrested or some shit but guess what? It doesn’t keep your average male (or female) patriarchal enforcer from trying to shut me down/up anyway and threatening my life for speaking at all, or in a way the patriarchy doesn’t like. The remedy for that appears to be to stay anonymous, and combined with a bit of skill in avoiding formal state attention I feel at least somewhat free to speak. So yeah, superficially perhaps I “like rules” but only a stupid idiot who needs to believe I’m retarded would stop there and believe that’s what is really going on. And male ASDs are unlikely to be able to explain any of this so that other people can understand it (assuming male ASDs share some of the ASD experience with ASD females, and they may not). Males in general seem to enjoy rules and thrive on them — the military experience for example. And how nice for them that they will be damned before they obey unwritten rules like women do, fuck that they all say, judging by their actions and their relative freedom to conform socially or not. Of course, men get to blow off the steam that’s built up having to constantly obey rules by raping and pillaging along the way but lets forget about/compartmentalize that part.

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  6. Honestly – I DON’T believe that ASD females share any experiences with ASD males in the social arena. I avoid any HFA forums because it’s a microcosm of what happens in the NT world: even more male-“dominated” (aka bullied). Males Aspies actually have the nerve to whine about how the good-looking, well-functioning female Aspies don’t wanna PIV them (the hussies!;-) I reckon that only the general neurological stuff like sensory & temperature sensitivity overlaps.

    My diagnosing male moron of a clinician couldn’t for the life of me figure out why I was never friendless or acquintance-less at any stage of my life. Or why I was never befuddled by social norms in any of the 3 countries I’ve lived in. Or had any trouble learning languages. Or how feminism could be the only reason I wasn’t paired up. Bloody dude also made do all the damn work in diagnosing myself, fitting it to male norms and then….convince him that the female variations are valid…while getting paid a pretty penny for it!!

    Not only can female Aspies not blow off their steam in the male-marauding ways, but we’re limited in the normal ways thanks to males hunting us. It’s nerve-wrecking for a woman or girl to be alone anywhere even in in broad daylight, but Aspies desperately need that isolated alone time to survive the daily exertion. Walking at night-time would be the perfect de-stressing tool if you didn’t have to be armed with a big dog & whatever fight equipment you can manage & be hyper-alert & have the MA pill ready.

    You’ve got me worried on my blog content now actually. Specifically 1 sentence that could be twisted to ‘incitement to violence’. Maybe I should scrap it now that WordPress has started policing radfem content. I used to get reported even on IMDb in the old days for my male-critical posts.

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  7. In a female-friendly world YOU would be paid a pretty penny & dividents for all your blogging because you set off the spinning process for every other non-reformist radfem online, it seems. Of course in THAT world you work would no longer be needed because we would’ve won. In this arena you would be only be needed as a historian documenting the ended patriarchal mechanics.

    It’s not known for certain that more male than females have ASD because the female ones are woefully under-diagnosed. I spent a whole decade in psych offices, being waved off with “depression & anxiety. take this pill, hop on a prostate and don’t bother us further, honey”. Even though I knew the whole damn time that the problem has got to be neuro – that’s why I got my head scanned early on (it showed nothing). I then looked at HFA symptoms and didn’t recognize the in myself cause they were male-as default. Only the push in the past 2 years for exposing the very different female symptoms online gave me the chance to figure it out.

    But wait…, that wasn’t all! Having diagnosed myself, I now had to chase down a psych & GP to rubber-stamp it over the entire country cause it’s that hard to find somebody who diagnoses female adults & can be arsed to do it. I also needed the cash to do it (it’s much cheaper here than US, but still sizable), and XXs belong to the impoverished class. After all that I was still faced with a doubting psych who barely modified the male criteria & therefore thought I was too functional before I arm-twisted him with my prep work.

    The roadblocks are f-ing unbelievable for female diagnoses. There’s also the lack of motivation for formal rubber-stamping for self-diagnosed women cause there’s zero support and stigma/employment risk.

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  8. Female HFAs are especially impoverished because they don’t get streamlined into cushy STEM careers with a lifelong red carpet of male perks (like my worthless on the spectrum sperm donor). They also gets screwed into having autistic kids because no one tells them that a)autism is highly hereditary; b)that 2 Aspies produce low-functioning autistic kids c)that their vulnerability acts like blood for sharks (extra nasty men).

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  9. Yeah I’m pretty unmotivated to seek any additional diagnoses at this point, for all the reasons you state. It would be nice to be on disability though, considering that my only alternative to being homeless and chronically ill at the same time will almost certainly be suicide. Assuming I can even pull it off, surely there will be a few minutes of finger pointing before I am completely forgotten about by every “community” I’ve been a part of, including this one lol.

    Speaking of being funneled into a lifelong career of being coddled and my contributions appreciated with material rewards, I used to get 100s on exams in both geometry and computer programming (and law) when no one else could figure out what the hell was even going on. Once I figured out algebra and symbolic logic I was acing those too with complete ease. Did literally anyone see “potential” in me to be anything other than a white trash penis receptacle? Nope. Not even the professors who were giving me fucking 100s when the next highest grades were in the 70s. Not one professor, not one time, not even the ones who gave me “attention” did they ever give me any material support or opportunities except the one old man in law school who let me be his teaching assistant for $5 an hour and gave me something to “put on my resume.” (BTW he told me that I had increased the average grade of every class I taught by 20 points or something and that I had actually helped his students learn. Is there any higher praise than that? Is there?) Well sorry, but who needs a fucking resume? What I needed was a damn job where I was appreciated by someone who knew what I was capable of, not a piece of paper that could get me an interview, only to be clocked as an aspie (or clocked as something) as soon as I walked in the door. Even after I put MYSELF through law school, graduated Magna Cum Laude, passed the hardest bar exam in the country on the first try, and was actually practicing law, my own clients thought I was the fucking secretary because I was female, and obviously not from generational wealth and generational education. It’s pretty easy to tell afterall.

    One radical feminist (ONE!) once offered me a “job” working for her for free until maybe a real job became available. I declined to work for free. A job never became available. And now that I’m back writing and interacting, I have 10 (down from 13) patrons contributing to my work and my general wellbeing which I am so grateful for! But has a single one offered me a job or a place to live? Has a single woman started a project and asked me for my input or offered to collaborate? What projects? LOL? There’s like literally nothing going on right now. The gaps I once identified in online publishing, gaps I intended to and did fill for years with my own work, were never filled once I left. I suppose it’s the retarded ASD in me that finds all of this quite befuddling — or I would, if I didn’t know better. And I only know better because I was smart enough to read between the fucking lines, and to figure out the rules of patriarchy well enough to articulate them to myself other people (and naive enough to think it mattered). If that’s not diagnostic for female ASD then I don’t know what is.

    IDK man. As much as I “understand” all of this, including the REASONS no women are offering me much of anything I can actually use, REASONS are pretty lame. You know? There were a million billion REASONS I could’ve failed at literally everything I ever tried, but I actually succeeded more than what I reasonably should’ve and it still doesn’t fucking matter. I’m 44 years old and my life force has completely run out. I need help and I’m not going to get it. Is there a single male in my situation who isn’t being taken care of by someone? Is there really? I highly doubt it! If I was a man, 1000 women would be in love with me and 900 of those would ask me to move in. lmao! Not that any of them should do that for any man, or at all, just that they would. But I’m a woman so what do I get? Maybe 20 women who “think” they are in love with me, which manifests as a couple of crazy stalkers, a dozen who put me on a pedestal (only to knock me down), 10 patrons, and little to nothing I can actually use. If I sound ungrateful, I totally, totally am. HAHAHAHAHA! I’m really really sorry if I am offending people who actually care about me (I care about them too, truly I do) but this fucking sucks! I am so, so tired of looking at every rod in every closet in every place I’ve ever lived, and wondering if it will hold my weight if I ever need it to. I am so, so tired.

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  10. Offend away. I get it.

    I’ve had a very similar trajectory except that I’m even younger & had to deal with migration on top of that. The only leverage I have for my mother being my carer is that she’s dependent on me for language & tech skills in a country she has no other grown-up family. That didn’t stop her abusing me even while I was on chemo though or providing the min. care she could for keeping me alive.

    I qualify for disability payments, but not disabled practical support cause CFS is dismissed outright. It’s still considered the modern lady hysteria against all evidence.

    I was also touted as such a smart, cute cookie since I was little. I worked my butt off at getting all these degrees and learning all these language & adapting to this new shiny country. Until I ended up in the pink ghetto, worked myself into the ground > voila! Here I am now 😦

    You’re right that we’re pre-destined to be stuffed by the time we’re born (if we even make it that far). All this Western “liberated choice” is an illusion. It’s hamster-in-the-wheel. Dudes don’t just like killing us. They love to watch us chase our own tail until we can no longer.

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  11. Thanks for understanding. It’s weird that understanding (being understood) means so much and matters so little, but it seems to do both. It means a lot. That’s so interesting to me that you were able to navigate the social aspects across cultures, perhaps even moreso that you were so adept at languages considering what is common knowledge about ASD (they can’t communicate). I’ve always been very good at languages too (Spanish and German in school) and of course, there is something about me and English that’s fairly unusual from what I can tell. I can communicate, baby. lol. But I’m better on paper than I am IRL. What have you found about female ASD and language/communication, if anything? Does anyone offer any real insight at all that rings true for us? I have researched female ASD just enough to see that there’s a lot of dead ends there (default-male, as you say) and I’m especially interested in the language part but I don’t quite have the energy to waste chasing down info that’s probably not even there. I was once told by a female lawyer, writer and Harvard grad that my blog had “literary merit” and I was absolutely fascinated by that. I’m not educated enough to really know what that means, but I do know that lots of women from different backgrounds grok what I am saying, even when I say it weird. lol. Or maybe because of that. Seriously, I think there’s something there with female ASDs and language. What do you think?

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  12. My two cents- you are an exceptional writer, but it’s not your use of language that’s.. maybe unique in the world? But rather your awareness. By awareness I mean perception + honesty, which are both ASD traits. (We are “over sensitive” and then we are “honest to a fault,” once the negative male spin has been put on.) What blows me away is that most people have NONE of it. Like, being a functional adult human does not require knowing what’s going on, or being honest with yourself about it.

    I enjoyed the convo between you two, on another thread, about women and the fact that “the best of us” were probably bread out. It’s such a thoughtcrime among radfems, but I think ‘we’ might give women too much credit. We default to the idea that they are a lot like us (or start out that way, and are then ‘brainwashed,’ which absolutely happens, but…) but what evidence do we really have that women are (generally) anything but less testosterone-poisoned men? I don’t know if I fully mean that, but here’s where I’m coming from- I saw so many radfems being like, “Yay FCM is back :)” and what kind of demons could read this blog and think “yay” ???

    Undoubtedly, women from different backgrounds are moved by your work, because it gives us permission to believe what we already see with our own eyes, but how many of your ‘fangirls’ really do grok it? It’s hard to tell.

    Anyway that’s depressing and I’m really re treading the same ground. About being an ASD female in general- I’ve had this little meme in my head that i thought I’d share:

    Me: Why are you torturing me????
    They: Because we have empathy and you don’t >:-)

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  13. Hi Nat, thanks for your comment! Your meme made me laugh, it’s just so, so true. And you’re right that “use of language” isn’t everything because there is only so much “creativity” the language can take before it’s not understandable to anyone. I mean, a creative (or eccentric) person can certainly take language to the very edge but any further than that and you are in “the artist formerly known as” territory. It’s unrecognizable. Experimental/experiential at best. And who knows if the message is really getting through? You’re right that it’s hard to tell who gets what, and that looking at their behavior says a lot. Interestingly, Prince said that once he changed his name to an unpronounceable symbol, for the first time in his life, people just started calling him “Sir.” LOL. Certainly not what he had intended.

    Now that you mention it, that people were all “Yay!” about the existence (and content?) of this blog, I know you’re right that people often just don’t get what’s written on the page, or not all the way, or not on every level, or not exactly as intended. I know that many people who read my perspective on suicide either think “she will think of something!” and that I will somehow get myself out of this mess, or they think along the lines of “suicide threat.” Who am I threatening? Same with people who think that women who attempt suicide and fail are merely “calling for help.” Oh really, SJW retards? Did it ever occur to anyone that so many women fail their attempts because women are oppressed and are therefore constantly surveilled so their attempts are thwarted by “discovery” due to lack of privacy even though they were completely sincere? Who did the woman call? No one. When I’ve said IRL that I will NOT be homeless and chronically ill at the same time, I’m sure people imagine I’m saying I will be rescued, or that things will work out. I think they really don’t grok, actually, that what I mean is that I very likely will literally have to end my own life to avoid it. And that many women have probably had to do the same thing. I’m actually not suicidal if you can grok that. But I might have to do it anyway. If people don’t understand the horror of that, I’m not sure I can explain it to them.

    Along these same lines, I only recently realized that some of the darkest, most hopeless material published on the HUB was written by Cherryblossomlife. Her posts on the horrors of psychiatry and gynecology were extremely, extremely dark but for whatever reason I didn’t fully realize what she was actually saying until recently. Like seriously, I was fucking Pollyanna compared to her! And she “hinted” (?) many times that she (and many women) actually got married and had kids to avoid the horrors of patriarchal institutions and that being oppressed by one man (a husband) is a fucking walk in the park compared to that, no matter what the man does to her. She also wrote about Fukushima on her personal blog right after it happened, but for some reason I didn’t grok that it affected me or anyone really. Then, she wrote about food, and how us “privileged” women have been separated from food and water, and how absolutely oppressive that actually is. Do women really get most of this on a deep level? If they did, could they even go on? If so, how? So like, I really think that the women who do actually fully get this stuff are already dead, either because it killed them, or because they couldn’t go on and didn’t. That’s how serious this shit is. And I had no idea that women were all “YAY!” about this blog, but of course they are, aren’t they. Because they’re fucking bored, probably. And probably NOT because they actually really “get” what it is I’m saying and doing here. That sucks, but I’m glad you said it. Thanks for reading (and comprehending! That’s important).

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  14. Esq., I’m sorry that I was so tone-deaf about your return. I just didn’t know what else to say because I don’t have the power to change your situation as I’m also chronically ill and an unkept female with no status. Letting you know that someone found your work valuable and life-changing was the best I could do.

    I’m sure you already know all the ins & outs as an attorney and I read about Cheryl. Would qualifying for disability make you stop cannabis treatment? I don’t know how the American system works. I remember Cherryblossom, but I still haven’t gotten far enough in the HUB archive to read her dark posts.

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  15. It’s ok kaguyamouse. You’re right too, that it’s hard to know what to say when someone is talking about something so awful. Which kind of sucks all around because I enjoy the interaction and the comments so much, but I think most people aren’t responding at all because they don’t know what to say. I appreciate you reaching out, and I think I took your comments as you intended, especially knowing that you’re sick too. I get what Nat is saying though too and I think she’s right (I assumed she was talking about convos happening elsewhere tho?, since there really isn’t a ton of discussion happening on blog for obvious and understandable reasons). I think there are many levels of understanding of this material, and that we are all on the same page on some of them, but not so much on others. There are people reading here who get the chronic illness stuff but not the politics, and others who get the politics but who really don’t, because they can’t, grok the chronic illness stuff. And everyone is just bored to fucking tears with mainstream convos and publications that don’t talk about anything important or real. It’s ok, really. I get it, and I’m glad you’re here. FWIW, no one has to be super charming or socially adept or whatever to be my friend lol. If I can’t pull it off, I certainly can’t expect it from anyone else. Thanks for reading and commenting. ❤

    WRT cannabis and benefits, there are issues there, yes. My main issue is that I'm too sick and alone to go to a doctor even if I wanted to, and I would need medical documentation to get approved for disability benefits. I would need someone to take me to appointments and shit, but I don't have anyone. And I don't want to go anyway because their treatments were only making me worse. I'm really fucked is the bottom line, and no I'm not sure anyone really gets that except me.

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  16. All that said though, to be perfectly clear, I think Nat was right that some women are just “demons” and think nothing of life-sucking other women, using their stories and their writing/work as entertainment to stave off the boredom of their own oppression, with or without “understanding” it and without giving anything back. It’s pretty obvious that that happens in this “community,” 100% yes. It certainly does.

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  17. kaguyamouse- Don’t worry, I was talking about people on tumblr! So many people reblog old excerpts from Femonade, but when a post went around explaining CR, Esq.’s current situation, they just hit “like” and move right along. Then they reblog the old posts with an “I’m glad she’s writing again” or whatever. Like, it’s ridiculous when you think of the cash generated by other tumblr “”communities””

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  18. I sympathize very much with all everyone is talking about and I hope there will be more medical miracles to help everyone in the future. I did want to mention that for years I thought I had crohns or IBS and it turned out to be a nasty case of Campylobacter poisoning. A bacteria. I finally saw a specialist and they had me take Cipro for the hell of it and it worked. Although it took a full 6 months for my guts to heal afterwards. I am not totally well and still get very ill during pms but most times there is a big improvement. I just wonder if anyone else suffering has this instead. They said being infected with Shigella is also very much like Crohns or IBS, but campylobacter much more so. My joints will ache for the rest of my life and I will always be tired and have off and on issues. Hope this info might be able to help someone out there.

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  19. Also, please try mint tea ( a powerful stomach and digestive anesthetic I have found, that takes away most nausea) and a heating pad helps as well. Even if this could help one person reading this, I thought it worth mentioning.

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  20. Thank you for reading Anna and for wanting to help. However, people with Crohn’s disease are extremely, extremely ill and peppermint tea and a heating pad is not going to help. Medical marijuana barely helps and it’s the best medicine there is for GI distress including nausea. I wake up nauseated every single day. Autoimmune disease, unlike IBS, is systemic too which means that you are sick from head to toe all the time. Crohn’s is completely different than IBS which only has relatively minor GI issues and no systemic/AI ones. I’m glad you got a diagnosis and that it was treatable/curable. My GI doctor did give me antibiotics at first to make sure it wasn’t c.diff or another bacteria. It wasn’t.

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