It Might Be “Ok Not to be Ok” For a Few Days But It’s Definitely Not “Ok Not to be Ok” Forever. Aka Chronically Ill. But Wait! There’s More.

Stop gaslighting everyone Jessie J!  This song and this sentiment (that it’s “ok not to be ok”) seem to be very popular amongst the very young and “neuroatypical” Tumblr crowd suffering from, among other things, anxiety and depression.  Reading the comments under the YouTube video reveals a lot, well, it reveals a lot of the same thing: young people feeling “not ok” and suffering through dark times only to reemerge triumphant in the end, and probably on addictive and expensive psych meds that will likely cause serious and even permanent side effects like involuntary muscle movements (and death).  That counts as “ok” apparently, and the “not ok” is “ok” if and only if it doesn’t go on too long and as long as you “get help.”

Of course, the side effects iatrogenic illness and injury from the psych meds themselves, including permanent neurological disability and death — and the “not ok” those cause — are worth it as long as the person is made ok now, for the time being.  Whatever “ok” means in this context because I sure as hell can’t figure it out other than that “ok” seems to mean “compliance” and specifically, willingness to engage with and submit to capitalistic patriarchal medicine.  Compliance and submission = ok.  Does this sound like it’s actually ok to not be ok?  Or does it sound like a bunch of shit?

And what happens when people are “not ok” for a long time, or forever?  Just ask someone who is chronically ill how friends and family perceive their illness once it’s gone on for months, years, or a lifetime.  In my own case, when I lost my apartment in a hurricane, had to move in with my ex-partner’s mother and was getting sicker by the day, my friends and family harassed me constantly for “updates” about the hurricane damage, my housing situation and the status of my health but I soon realized they weren’t looking for truthful reports so much as they were demanding constant assurances that I was Ok and that everything was fine.  When the truth was I had never been so not-ok in my life and considering the nature of my incurable, progressive disease I was unlikely to be “fine” ever again.  No one wants to hear that!  Hearing that makes them feel not ok!  And healthy people have to feel ok all the time no matter what, even at the expense of sick people and sick people’s ok.  So is it really ok to not be ok?  No.  Sick people have to learn to fake it if they want (or have no choice but) to maintain these relationships.  But there’s more.

Continue reading “It Might Be “Ok Not to be Ok” For a Few Days But It’s Definitely Not “Ok Not to be Ok” Forever. Aka Chronically Ill. But Wait! There’s More.”

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Baby Poop Smoothies in the Age of Nuclear, Autism and Autoimmune Disease. Caveat Emptor Y’All.

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ca·ve·at emp·tor
/ˌkavēˌät ˈem(p)ˌtôr/

  1. the principle that the buyer alone is responsible for checking the quality and suitability of goods before a purchase is made.

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Baby poop smoothies.  Have people heard of this?  It’s along the same lines as fecal transplants, where both are alternative treatments used to treat and even “cure” various bowel ailments from which people are desperate, absolutely desperate for relief.  People suffering from gastrointestinal dysfunction and disease are literally willing to eat, drink and/or rectally insert other people’s shit in order to make themselves feel better, and as a Crohn’s patient myself whose serious debilitating illness was not responding to conventional care, I understand what would move anyone to attempt drastic measures to relieve the pain and disability of a crippling gastrointestinal condition which can quickly make anyone’s life unbearable.

In my own case, I submitted to suffered through 2 years’ worth of ineffective and damaging Western medical treatment for my Crohn’s; the relentless agony of un- and undertreated Crohn’s disease was hellish and terrifying, and despite accepting treatment I was only getting worse.  When I saw what was happening to me, and that the path I was on would not lead to a good place, I took my health and life into my own hands and moved across the country alone to legally treat with medical cannabis, otherwise known as marijuana.  If I hadn’t done that, and was left to suffer through more Western medical treatments (or no treatment at all) I would have likely sought relief with various alternative treatments with little or no regard for their weirdness, offensiveness, or likelihood of success.  Although I had researched fecal transplants and found that they are not indicated for small bowel Crohn’s, which I have, I am sure that eventually I would’ve come across the concept of, and been tempted to try, the Baby Poop Smoothie.

Continue reading “Baby Poop Smoothies in the Age of Nuclear, Autism and Autoimmune Disease. Caveat Emptor Y’All.”

Autoimmune Women Are Supposed to Pay Doctors to Give Them AIDS. Are You Fucking Kidding Me.

Remember when “they” were saying that getting AIDS was like the worst thing ever?  I do — I am a child of the 80s afterall, and I was in 4th or 5th grade when the AIDS crisis hit and everyone was terrified of getting AIDS, children (children!) were being told to never have “unprotected” sex because of the AIDS, early on we were being told not to use public drinking fountains and to ostracize children with AIDS so as not to get AIDS ourselves.  Remember Ryan White?  I do!  I didn’t even have to Google to find his name, 40 years later I still remember his name and his story by heart, he was from my state and a few years older than I was.  He scared the shit out of everyone because he wasn’t doing anything “wrong” when he contracted AIDS like having the unprotected (or gay) sex.  That poor soul got it from a medical procedure, in his case, a blood transfusion for hemophilia.  Tragic.

Soon it became passé for anyone to trouble themselves with “how” anyone contracted AIDS — AIDS patients deserved our compassion, our respect, our acceptance of their physical and mental decline and resulting disability, regardless of how they got it.  Remember Ali Gertz?  I do.  She was a straight, affluent, white female and she got HIV and developed AIDS from a single sexual encounter with a man.  Of course, the man was bisexual and almost certainly got it from another man but by then it ostensibly didn’t matter…unless a woman gave her baby AIDS, then of course the woman was the Devil.  AIDS didn’t discriminate, AIDS was a horrible, painful, untreatable disease, a death sentence that no one deserved…except mothers who gave their babies AIDS, they deserved everything they got and more.  But deserved or not, no one was disputing that AIDS was serious, painfully serious, brutally final.

At some point “they” started saying no it’s not the AIDS specifically that’s the problem, it’s the HIV you don’t want, and that’s a virus so just use Universal Precautions and you should be fine!  Fairly recently they started saying it’s possible to “live with” HIV and never develop full-blown AIDS at all.  The message there appears to be that AIDS is actually what you don’t want afterall.  AIDS — Acquired Immuno Deficiency Syndrome — where your immune system becomes weakened, decimated and destroyed and you develop life-threatening opportunistic infections from bacteria, viruses, parasites, fungi, you get cancer (or more than one) and then need to be treated for the cancer(s), your quality of life plummets to zero and you can no longer work or play effectively, your friends and family have to care for you, even though there’s nothing long-term they can do for you, and you die painfully, skeletally, covered in sores and rashes, beyond spent, half out of your mind.  That’s the effects of the AIDS mind you — the HIV in and of itself appears to be relatively harmless except that it causes AIDS, and AIDS is still bad, very very bad, something unequivocally to be avoided.  Are we clear on that?  Good.

Enter “biologics,” the class of “treatment” — read Big Pharma poison — approved for managing autoimmune diseases like Multiple Sclerosis (MS), Rheumatoid Arthritis (RA) Crohn’s disease and more.  The so-called “side effect” of biologics — read iatrogenic illness and injury, meaning additional illness and injury caused by medical attention and treatment itself — is that biologics “change how your immune system works.”  That obfuscating bit of Big Pharma propaganda brought to you by the literal pricks at Johns Hopkins Arthritis Center.  Of course, “change” here means “destroy” and going from having a functioning immune system to not having an immune system at all is certainly a change so they aren’t technically lying but WOW, just wow.

Continue reading “Autoimmune Women Are Supposed to Pay Doctors to Give Them AIDS. Are You Fucking Kidding Me.”

You Can’t “Outsmart” Trauma. That’s Actually Not How Trauma Works. Or, What Doesn’t Kill You Makes You Traumatized and Increasingly Unable to Function.

I’ve been thinking a lot about trauma lately as I contemplate my increasingly vulnerable and terrifying station as a chronically ill woman who will have to rely on the long-term care and concern of others if I am to survive.  For some reason I found this topic exceptionally difficult to write about in a coherent and meaningful way and in my experience as a somewhat seasoned social critic, that usually indicates that there is some thought-termination around the issue and that I am working my way through something that is not meant to be dissected and understood and that is probably the case here.  For whatever reason, this post seems like it just does not want to be written, and as a writer and a creative person I can and do respect that, so I am giving up on the idea of writing a proper post about it.  I have scrapped a dozen versions of this post and I’m glad they are gone.

But there is something that I — not my muse — would like to say about trauma, about women’s experience with trauma, how it affects us, and what little can probably be done about it.  But little is not nothing, and where there is anything women can do to avoid trauma and to avoid becoming traumatized, women seriously need to do everything in their power to avoid it.  The effects of trauma on our long-term physical and mental well-being are just too serious to ignore and we cannot keep letting this happen to us; we are told that “what does not kill us makes us stronger” but this is a reversal, and a lie.  And besides, there are probably worse things than death and it seems to me like trauma may be one of those things.  In reality, the constant traumas women experience that stop short of killing us only make us weaker, sicker, and less able to function.  For women, the effect of constant trauma is that we are neither here nor there — we end up the walking dead.

Continue reading “You Can’t “Outsmart” Trauma. That’s Actually Not How Trauma Works. Or, What Doesn’t Kill You Makes You Traumatized and Increasingly Unable to Function.”

Swallowing “Professional Middle Class” Hook, Line & Sinker. Academic Tenure Can Be Revoked Due to Illness (and Other Reasons).

This is Ruby.  Ruby is a mommy vlogger with over a million subscribers, is the sister of Bonnie and Ellie, and like her sisters is also a generational member of the LDS religious cult (Latter Day Saints, aka Mormons).  Ruby has a family including 6 young children and a husband.  Ruby and her husband have spent their entire relationship getting Mr. Ruby educated with a Master’s and a Ph.D and Mr. Ruby has used his education to get a teaching job which he has held for the last several years.  Mr. Ruby just found out he got tenure which means he can never be fired* from his job.  According to Ruby’s understanding of the situation, this means that they will always have money and therefore that they will always have security.  That they will always have necessary and discretionary income.  That they will always have a home.  Ruby is so, so, so very happy about that.

Judging by her life and lifestyle as a married middle class woman with children, Ruby has clearly bought into one myth, the myth of the middle class mother and wife who thinks that having a successful husband is a guarantee of current and future security.  She assumes that he will never leave, or decide to spend his money recklessly or on other people or in ways of which Ruby herself does not approve.  It is possible that their shared religion and community as LDS may function as a social glue that holds this couple together and keeps Mr. Ruby’s money in the shared account (and his dick in his pants) so it’s possible that Ruby is a bit smarter than most women who do the same thing but who don’t have anything holding their marriage together besides “attraction” or “love” or shared interests or shared parenting or other such fleeting things.  And to be fair, Ruby might be right about Mr. Ruby and Mr. Ruby might be the greatest guy or even the greatest person in the entire world and their plan to be secure for the rest of their life based on his job might be reasonable under certain circumstances.

But how realistic is it really, when the future security they have both worked so hard for is completely dependent on Mr. Ruby’s physical and mental ability to work, especially now where we are experiencing the collapse of our ecosystem and where so many people are becoming seriously chronically ill?  What if Mr. Ruby already has a latent condition of which he is not yet aware including the increasing likelihood that any of us has a confounding autoimmune disease that will be resistant to treatment, both incurable and progressive, and where the conventional treatments are known to make autoimmune patients worse and even more disabled than they were before?

*Tenure can be revoked y’all.  And not just because of disability either.

Continue reading “Swallowing “Professional Middle Class” Hook, Line & Sinker. Academic Tenure Can Be Revoked Due to Illness (and Other Reasons).”

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.”

Another 4/20 Post. The Literal Insanity of the “Alternative Treatment” Dilemma. Or, Too Sane to Ride the Crazy Train, But Buying a Ticket Anyway.

This post was inspired by a comment left by Nat.

It took me a good year and a half before I figured out a cannabis and diet and nutritional protocol that worked for me to treat the debilitating symptoms and pain of my Crohn’s disease.  After an entire year spent trying various cannabis products and finding profound pain relief and significant healing of my gut, I next started a regimen of top-quality supplements and 100% organic and fermented organic foods.  After an additional 6 months on the new diet, combined with continued cannabis use, finally I started feeling noticeably better.  Against considerable odds, I had managed to heal my gut well enough to process and absorb nutrients from food, and I had added a quality multivitamin, digestive enzyme and whole nutritious organic and non-GMO foods to provide those nutrients and it worked.

After being out-of-state treating with medical cannabis and organic and fermented organic foods for a year and a half, and having nowhere else to go and no way to get there anyway as I was still too weak to travel, I felt I had the energy to try to “make it” in my new home state.  For a year and a half after that I was able to continue paying for out-of-state housing and medical treatments by working intermittently on my small business and by maxing out my credit and liquidating my modest assets but now everything is gone; by itself, my ability to work intermittently will not be good enough to sustain my health, my home or my life.  Not only am I broke and my credit destroyed, my financial documents are a shambles and will be so indefinitely due to my inability to reliably maintain the books of my small business putting need-based benefits out of reach.  The 3-year gap in my medical records beginning when I abandoned Western medicine and sought alternative treatment with medical cannabis means I am ineligible for disability-based benefits too.  While I may be able to fix some of this with a bankruptcy or other action and start over eventually it will be some time before I can even apply for a rental property let alone afford to pay for one in a cannabis legal state or anywhere — I have truly lost it all trying to finance my journey to heal myself with medical cannabis.

I need somewhere to rest, relax and recover for at least a year while I clean up this mess and I need to do it in a cannabis legal state so that I can continue my treatment.  That is what I need if I am going to remain relatively healthy, pain-free and to repair the damage all of this has caused to my finances and to my life and obviously doing so would be in my best interests.  And — notice that’s an and, not a but, that’s important —  there is likely no way I am going to be able to do that.  I am in a cannabis legal state now, and I have figured out a way to heal from and live with Crohn’s disease, but after 3 years I simply cannot afford to stay.

And at the same time I also cannot afford to leave a cannabis legal state with this serious incurable and conventionally untreatable medical condition and doing so would in fact be pure insanity.  Everyone I tell about this says “you can’t leave, you need your medicine!” and of course they are right.  Without access to medical cannabis, I will lose the hard-won gains I have made in my health and well-being — gains which have cost me everything to achieve and maintain even for this short while — only to plummet once again down the Crohn’s-hole of excruciating and intractable physical pain, debilitating systemic effects and digestive issues including dangerous erosions, ulcers, inflammation and other partial bowel obstructions, malabsorption, dehydration and malnutrition, the escalating and aggregating side-effects and iatrogenic illnesses and injuries that come with conventional Crohn’s treatments and unavoidable psychological trauma from both the illness and the treatments themselves.  Within days of stopping my treatment I could easily land in the hospital or worse as I will be unable to control my affect or behavior while suffering from intolerable intractable pain and even though I can see this entirely foreseeable result coming from a mile away, there is nothing I will be able to do to stop it.

Continue reading “Another 4/20 Post. The Literal Insanity of the “Alternative Treatment” Dilemma. Or, Too Sane to Ride the Crazy Train, But Buying a Ticket Anyway.”