Patreon Drive for August 1 Donations. Thank You for Your Support. Update Below the Fold.

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 12 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 immediate eligibility for benefits and little or no ability to earn.

Continue reading “Patreon Drive for August 1 Donations. Thank You for Your Support. Update Below the Fold.”

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Patreon Drive for July 1 Donations. Thank You for Your Support. Update Below the Fold.

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 13 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 immediate 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 July 1 Donations. Thank You for Your Support. Update Below the Fold.”

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.”

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.”

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.”

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.”

“The Cannabis” is the Only Reason I Can Tolerate This. Another Family Member’s Response.

You are totally wrong about Crohn’s survivors.  The real survivors have real families and real jobs and real lives.  You need to up your game.

This was my mother’s response — remember her?  She’s a nurse.  She was responding to me telling her — a nurse — that Crohn’s disease is incurable and progressive, and that if she thought that my treatment with medical cannabis was a failure because I wasn’t cured, she wasn’t thinking things through.  A nurse, a fucking nurse, not only has no idea that an incurable and progressive disease is both incurable and progressive, she disbelieves me when I tell her, and she has obviously never even bothered looking it up.  Here is the first result when you ask Google “Is Crohn’s disease progressive?”

Stages of Crohn’s Disease

Crohn’s disease is marked by inflammation of the gastrointestinal (GI) tract. The inflammation can appear anywhere in the GI tract from the mouth to the anus. People with the disease often experience ups and downs in symptoms. They may even experience periods of remission. However, Crohn’s is a progressive disease that starts with mild symptoms and gradually gets worse. The stages of Crohn’s range from mild to moderate to severe. The earlier you treat and manage Crohn’s, the more likely you’ll reduce your risk for developing severe symptoms.

That was from Healthline but it’s also on other sites as well, like this offering from a peer-reviewed medical journal:

Crohn’s disease (CD) is a progressive disease that is subdivided into three phenotypes: inflammatory, stricturing and penetrating. At diagnosis, most CD patients have inflammatory disease. However, the natural history of CD is one of progression over time to structural complications of the gastrointestinal tract (strictures and fistulae) requiring hospitalizations and surgeries.

And this from the Crohn’s and Colitis Foundation, a well-known Crohn’s and colitis charity (whatever the hell “charity” means in that context.  They fund medical research) when asked whether Crohn’s is incurable:

Known collectively as inflammatory bowel diseases (IBD), Crohn’s disease and ulcerative colitis affect more than 1.6 million Americans. That’s one in every 200 Americans living with one of these debilitating, medically incurable diseases that attack the digestive system.

Continue reading ““The Cannabis” is the Only Reason I Can Tolerate This. Another Family Member’s Response.”