Being Chronically Ill in a Disaster Zone. As Usual, the Social Safety Net is All Holes and No Net. Also, Don’t Donate to the Red Cross.

This video was posted 2 days ago and documents the realities of living and surviving in the wake of a natural disaster, in this case, the ongoing volcanic eruptions on the Big Island of Hawaii.  Some of the evacuees and displaced homeowners are elderly, disabled and/or chronically ill and their lives have been turned upside down by clouds of toxic gasses and rivers of lava running through their homes and communities and their situations are being made worse by the lack of reliable social services available to anyone under these conditions.  But being chronically ill, disabled, and dependent on medication on top of the “normal” disaster-related stresses healthy people are also experiencing is proving to be unbearable and people are starting to crack under the strain.  One 81-year old diabetic man is living with his 83-year old wife in tent in the shelter parking lot, doesn’t have his medication, and the Red Cross is not helping them and is only making things worse with their bureaucratic red tape making displaced and chronically ill people jump through ridiculous hoops just to have their basic needs met with shelter, food, water and medical care.

I can really relate to these people because I was becoming intolerably ill in late 2012 just as Hurricane Sandy wrecked the east coast and I lost my apartment and was essentially homeless, and had no choice but to move back in with my now ex-partner’s mother where I slept on a couch for 6 months, and then on a toddler bed for another 6 months during which time I was becoming increasingly and devastatingly ill.  Since then, based on that experience and others I have had since I first fell ill with a serious chronic illness, I have realized that it is frequently not the illness itself that causes all or even most of the problems chronically ill people face, but it is the lack of resources and social and financial support available to sick people under the best circumstances that make our already grossly diminished lives unbearable.  When we are also faced with extenuating circumstances like natural disasters and living and surviving in a disaster zone, often with no power, climate control, food, water, medication or other necessities of life it becomes an intolerable burden, and these disaster-related consequences can go on for months and even years, long after the public and geographically-distant friends and relatives have moved on and forgotten.

Continue reading “Being Chronically Ill in a Disaster Zone. As Usual, the Social Safety Net is All Holes and No Net. Also, Don’t Donate to the Red Cross.”

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).”

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.”

Patreon Drive for June 1 Donations. Thank You for Your Support.

patreon
Please click the Patreon image in the sidebar or use the links below to visit my Patreon page. Thank you for your support. >>>>>>>>>

Thank you to my 10 existing Patrons!  I appreciate your support.

I would never ask to be rescued from a more or less natural death.  When I came here 3 years ago to treat my serious chronic illness with medical cannabis, I really felt like I was dying, that I had no choice and that even if I “lost everything” it would not matter.  My quality of life was nonexistent and I was so extremely ill that I thought either I would die from my disease (which I believe is essentially a terminal illness, or at least that it’s terminal without treatment) or that I would heal enough to go on with my life even if it looked much differently than it had before.  3 years later, I have “lost it all” having paid out-of-pocket for out-of-state lodging and treatment which has given me profound pain relief and significant healing from the ravages of my incurable and disabling autoimmune condition, Crohn’s disease.  While I consider this to be an unlikely and hard-won personal success and am so grateful that I was able to do that for myself, I am now facing something I did not expect: figuring out how to live into the foreseeable future with an only somewhat healed and temporarily managed illness and no money, no credit, no eligibility for benefits and little or no ability to earn.

This is Mama and Chili, my 2 adopted shelter cats.  Mama is the calico and Chili is her now-grown female kitten and appears to be a ragdoll mix.  They are so happy being together and the 3 of us have been blissed out for 3 years living in a modest calm and quiet living space in a beautiful rural area.  Mama and Chili are indoor/outdoor cats and get plenty of fresh air, sunshine, grass to chew on and bugs to chase.  Please help us stay together!

Continue reading “Patreon Drive for June 1 Donations. Thank You for Your Support.”

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.”

“Functional Medicine” for Autoimmune Disease. More Gaslighting About the Sustainability of Alternative Treatment.

This video proposing and explaining alternative treatment for autoimmune disease using so-called “functional medicine” was somewhat interesting and gave me a bit of perspective into my own illness including what situations I should avoid in the future if I have any hope of maintaining my new-found relative health.  From a so-called functional medicine perspective, which is explained in this introductory video, it seems as if my extremely toxic upbringing by a sadistic, misogynistic Western medical doctor and nurse, as if there is any other kind, probably contributed to my serious chronic illness where trauma and abuse probably rewires the mind and body in ways that are disease-producing and very difficult to overcome under the brutal conditions of capitalism and patriarchy.

Continue reading ““Functional Medicine” for Autoimmune Disease. More Gaslighting About the Sustainability of Alternative Treatment.”

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.”

Crohn’s Disease and Euthanasia. Medically Assisted Suicide for Intractable Pain and Symptoms in “Nonterminal” Illness

This man, Jason (Jay) Franklin, has Hirschprung disease, a congenital birth defect in which the colon and possibly also the small intestine are not properly enervated causing bowel obstruction and inability to pass stool.  He had his first abdominal surgery at 14 days old which left him with a life-long colostomy bag and has had, in his estimation, 15-20 or more additional abdominal surgeries in his life to treat obstructions and iatrogenic illnesses from the treatments and surgeries themselves as abdominal surgery and manhandling the intestine actually cause bowel adhesions that require more surgery and so on.  At the time this footage was taken, he was on opiate pain relievers and Valium to dull the severe pain and physical and emotional distress of his disease which medications leave him cognitively impaired and he still has severe symptoms that leave him disabled from working and which prevent restful sleep.  He is also still unable to digest most food and is unable to care for himself and lives with his mother.  In this documentary, he is observed in his ordeal to apply for and be accepted to a Swiss euthanasia program called Dignitas where he intends to take his own life due to the intractable pain and incurable symptoms and progression of his disease.

While this man does not have Crohn’s disease, his condition is similar in many ways including severe intractable pain, gut issues leading to malnutrition, malabsorption and dehydration, and the incurable nature of his illness which Western medicine nevertheless does not consider terminal because there are “treatments” available when his bowel becomes obstructed, when fistulas open between his bowel and bladder causing him to urinate feces, and when he develops life threatening infections and sepsis.  Swiss euthanasia clinics appear to be the only such services available to nonterminal patients who suffer from intractable pain, and this video documents his attempts to navigate the financial and bureaucratic minefields standing between him and his chosen escape from his suffering: assisted dying, otherwise known as euthanasia or medically assisted suicide.

Continue reading “Crohn’s Disease and Euthanasia. Medically Assisted Suicide for Intractable Pain and Symptoms in “Nonterminal” Illness”

My Correspondence with Christian Scientists.

Awhile ago as I was wracking my brain trying to figure a way out of this mess, I realized that I needed a strong ally that would respect my desire to avoid capitalistic patriarchal medicine.  The utter contempt and terror I feel towards all medicine and all doctors by now, having failed me and my loved ones so completely, means that I want and need to avoid Western medicine at any and all costs, but where except the hospital or jail can I reasonably expect to end up once I am unable to control my affect or behavior due to the intractable pain and disabling symptoms of my disease?  For lack of a better term, as a chronically ill person with an incurable and progressive disease, but one that Western medicine has a vested interest in pretending they are able to treat, I need an “underground railroad”* to rescue me from doctors, nurses, and Western medicine, and I will need help to keep running from them for the rest of my life up to, including and after I become too sick to run.  I need an organized, well-funded and politically-minded group of people who will not let this happen to me.  And that made me think of the Christian Scientists.

*I understand that my use of the term and concept “underground railroad” is culturally appropriating and that the term refers to a specific historical context, time and place.  However, one of the things oppressed people and particularly oppressed (meaning all) women have always needed was help escaping patriarchal medicine including medicalized abuse, medical experimentation and torture which is exactly what I am talking about in the context of “treating” an incurable progressive disease that does not respond to conventional treatment and mine didn’t.  If someone knows of a better term or concept for what I am expressing here, I hope they will share it.

Continue reading “My Correspondence with Christian Scientists.”

Tee-Hee, Tee-Hee. Mommy Vloggers Publicly Shitting Themselves is So Funny.

The story starts around 16:38.  Mommy vlogger Ellie Mecham publicly shits herself at a 4th of July outing.

This entire video is about mommy vlogger Bonnie Hoellein publicly shitting herself while on vacation.  Bonnie and Ellie are sisters, members of the LDS religious cult, and each have around a million subscribers on YouTube.  And having listened to them tell their tummy troubles stories over the past 2 years, and knowing that Crohn’s disease runs in families and mostly affects women, I suspect that both of them have Crohn’s or another inflammatory bowel disease that they themselves, their families and extended families, and their YouTube communities and subscribers are not taking seriously.

Continue reading “Tee-Hee, Tee-Hee. Mommy Vloggers Publicly Shitting Themselves is So Funny.”