Posted in medical, Uncategorized

Hippie food

So I’ve been struggling to keep my potassium at normal levels even with supplements.  I’m losing fluid continuously out a hole that has to wait a long time to close naturally.  Combined with the fact I had cellulitis and ended up on antibiotics (yeah this surgery has sucked donkey balls with the complications, it was a simple surgery that went awry in a million ways) which did… things… to my digestion, I’d been losing so many fluids I went alkaline and all my electrolytes ended up askew because of that.  Even after the antibiotics stopped, still losing lots of fluids, still going alkaline.  (I have other risk factors for that but never actually go alkaline except when losing a lot of fluid.)

So my potassium was going low and staying low.  Not as low as it’s been in the past.  No stopping breathing, no seizures, no lab results marked “LL” for super-low instead of low, nobody telling me it’s critically low like at my last hospitalization.  But low potassium is too low potassium, and even with supplements it wasn’t staying up.

The nutritionst learned I like to go to the cafeteria and grab things like V8 to get some nutrients that aren’t in my tubefeeds.  She thought this is great.  (She seemed thrilled to have a patient whose main food craving is vegetables.  She must not get that a lot.)  Anyway she told me that they wanted to see if adding food sources of potassium would help me in addition to the supplements  So she gave me a list of high-potassium foods, which happened to mostly be foods I was already getting.  She also said I should try kombucha as a probiotic because it’s easier on my guts and on my tube than yogurt.  I’d never heard of kombucha but it is easier to digest and it smells good.

And she also gave me this nifty pass that allows me to buy anything in the cafeteria for free as long as I am a patient here!

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My free food cafeteria pass!

So I go in there and the highest-potassium food in the cafeteria is coconut water.  Which comes in the most ridiculous hippie-oriented packaging.  So I’ve been stocking up on coconut water, kombucha, V8, and whatever other random liquids they have that are on her list.  But mostly coconut water because it has the highest potassium.

And it works, my potassium is up.

But I feel ridculous someimes with my cafeteria tray filled to bursing with hippie food:

Photo on 7-26-18 at 2.36 PM #2
Kombucha, coconut water, and V8. The kombucha and the coconut water feel like I’m eating hippie food.

But my potassium is up and indeed this morning my electrolytes were totally within normal range for the first time since I got here.  So the hippie food works!

So I guess I will be eating  lot of hippie food for a while.  If the hydration and potassium help keep me out of alkalosis, I’ll eat damn near anything.

But the hippie food… wow.  My friend wanted to go to the gift shop and get me some kind of stereotypical hippie items to go with my new food preferenes, but she couldn’t find any tie-dyed scarves or anything so she gave up.  She has been attempting to tell me that my plan to eventually create a prebiotic and diabetes-friendly vegetarian diet using regular food (i’m high risk for diabetes because steroids and my tubefeed diet is not good for that, and the prebiotics help prevent c diff which I’ve gotten already this year and am high risk for, meamwhile vegetarian because easier to hang in feed bags without worrying about rapid spoilage) proves that I have been a closet hippie all along who believes in natural organic everything and thinks my food choices make me one with the earth and karma and all sorts of ridiculousness.  (She gets very elaborate with her teasing but it’s all friendly.)

But in this case the hippie food is working, so I’ll put up with any jokes.  I find it kind of funny myself.

SERIOUSLY look at the packaging on that coconut water…

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Posted in Death & Mortality Series, Developmental disability service system

When powerful people don’t care if you live or die…

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Dolores Umbridge might be the ultimate representation of Nice Lady Therapists at their utter worst…

This post is part of my Death & Mortality Series.  Please read my introduction to my Death & Mortality series if you can, to understand the context I write this in.  Thank you.

Not all of my thoughts on death and mortality are purely personal.  Although this is certainly born out by personal experience, this is much more in the ethical/political realm than my personal relationships with Death itself.  And is just as important to the whole picture of how I approach death and mortality, and one reason I’ve been so reluctant to post my actual experiences of Death being a benevolent and friendly force.

If you are disabled.  If you are cognitively disabled.  If you are developmentally disabled.  There are people who literally do not care one way or the other if you live or die.  And there are people who actually kind of wish you’d die — some more fervently than others.  And there are people in positions of power who will either fail to act in ways they would normally act, or actively push things a little more in the direction of your death (sometimes obviously, sometimes more passively with plausible deniability).  And to be unaware of this is to be unaware of serious danger.

These people can work in the medical profession.  Many do.

These people can work in agencies that are supposed to give you support.  Many do.

These people can work in any major position of power over you.  Many do.

And I’m not talking about serial killers, although they take full advantage of some of these situations in all kinds of ways.  I’m talking about people who mostly think of themselves as kind of normal.

But they can still kill you with apathy, indifference, and even varying degrees of malice.

My developmental disability agency just announced to me last night things that confirmed the warnings I had been receiving from friends that this kind of thing was at work right now.  They want me suddenly doing things I have never been able to do even at my physically healthiest (and they have ample documentation of my inability to do these things), things they have been doing for me for thirteen years without incident until my DPA filed a medical neglect complaint against them.

This is part of an attempt to railroad me into a service model (which requires moving out of my own home and would not get me any better care) that they prefer for me.

This is part of retaliation for filing the complaint, before which there was no talk of railroading me into this service model.

But they know.  Perfectly well.  That I was struggling to stay alive and stay out of the hospital with the amount of services I was getting.  (I have had recent unexpected cascade-effect complications from a surgery and have been going alkalotic at the drop of a hat.  Long story.  But it’s taken everything I have and every skill I have to stay out of the hospital and alive as long as I have, and I’ve been back in the hospital since Friday.)  And they knew that the reduction in services caused by a staff vacation/staff shortage contributed to my ending back up in the hospital.  They knew all this.

Then they sent me a letter saying I am no longer entitled to have anything done for me, that I must physically participate in everything.

They know, in detail, that this is not possible for me.  They know, in detail, that this would be dangerous for me on multiple levels even without a severe, acute health crisis.  They have documentation of every single reason in more detail than they probably care to know, that even moving my body through the motions is physically dangerous to me.

They know these things.

So the only conclusion I can reach when they insist that these things happen anyway, is that whether I live or die doesn’t matter to them.

The fun part is if I do die, I’m sick enough they’ll probably get away with it even if they’re very culpable in the events leading to it.

But my friends have been telling me I might not live out the year the way this agency has been treating me, when I probably would otherwise.

When I say I accept death, it does not mean I accept THIS.  This isn’t death that just happens.  This is some toxic combination of apathy and malice, and the worst part is I don’t know precisely where it’s coming from.  But people have warned me about it just before this happened.  And when I spoke to medical professionals about it, they told me this kind of thing is very real and something to always keep in mind.

So this is happening.  Now.  I am in the hospital.  And I got a letter that started out with a basic “Sorry you’re in the hospital” thing and then a “But we’re gonna try to make you do shit that’d probably kill you or land you back in the hospital to try” thing.  Which makes the “Sorry you’re in the hospital” part feel completely phony.

I was starting to feel a little better and look forward to going home sometime soon, maybe not as soon as I’d like, but soon.  But I can’t go home to being expected to physically do crap I couldn’t safely do on my best day.

And I can’t stress how much someone at some level is perfectly aware what this means that they are asking this of me just now.

And that they don’t care the risks to me (even if they think it’ll just push me into accepting their bullshit program) tells me they really don’t care deep down if I live or die.  Because people who care if you live or die don’t dangle you over a cliff (or even pretend to do so) to get you to do what they want, even if they think they have a good hold on you.  Ever.

And the fun thing is even if you see this, and even if those around you see this, and you see the patterns enough to know what’s happening, you can’t necessarily tell who precisely they are.  They may be someone you never meet directly.  But people who explicitly range from apathetic to malicious abour your continued existence are out there.  And unfortunately in our culture of familial and caregiver benevolence, nobody who hasn’t seen it for themselves wants to believe it, even though it’s something well beyond commonplace.

So you can’t always just point to an Umbridge.  Even if there’s an Umbridge, or a small army of Umbridges.  (Umbridge got into this post because someone referred to this, after reading the letters, as “Dolores Umbridge-level fuckery”.)

And for the record, accepting death as a whole does not mean I accept this kind of death for an instant.  If I die because I’m expected to do crap I’ve never been able to do and is now physically dangerous for me to even be walked through the motions of, that’s not just dying because I’d die anyway.  And there’s a huge difference.  And I hope I don’t have to explain that difference to anyone.  I’ve long said that dying because I’d die anyway is fine with me, but dying out of someone’s apathy or stupidity or malice will leave me the world’s most pissed-off ghost.  If I had any intention of being a ghost, which I don’t (not sure it’s possible but very sure that trying would be destructive).  But you get the idea.

Posted in Death & Mortality Series

Life has the fragility of a leaf full of holes shaking

This post is part of my Death & Mortality Series.  Please read my introduction to my Death & Mortality series if you can, to understand the context I write this in.  Thank you.

Shortly after I came home from the hospital, I stood outside next to a tree. I leaned on the tree because the short walk had wiped me out.

I felt my entire body at once. I was shaking. I felt like the thinnest and most fragile leaf, with holes in it. I started to feel transparent.

Light shone through the transparency that affected everything. With it, love, connection, change, truth, things that can never be named or described. Still aware of my entire body at once, the immense struggle it took to physically continue on any level. How close I was to death. Light through the leaves on the tree above me. Light through me invisibly, through everything.

I understand important things through the workings of the redwoods. Things without names, things without words. Redwood Terrace is holy ground embedded in my soul. Under my feet is earth, and roots, and many things unseen. And a connection to Redwood Terrace, outside time. And I am there, as well.

The fungal mycelium people never think about, under their feet all the time. Life, and death, and life, connected, changing, moving, things becoming parts of one another. An old, familiar, comforting promise: If you die this time, if you must step over that edge, we promise, we promise this is in store for you on every level, and if you want, we will eat you, we will change you, you will become life for so many, and on it goes, and this is love, this is our offering to the world.

If I knew I was dying and there were no consequences to these acts, I would put my last ounces of energy and effort into going to Redwood Terrace. I would find a hollow tree or the closest thing, curl up, and wait. The end might be painful, terrible, messy, but nothing is tidy about dying and none of us is guaranteed it will be easy. I would die in the place I have the most connection to. My last act to offer myself over to that place, body and soul. Everything from microbes to plants to animals to fungi would have a feast and I would turn into life, and things would be happening on levels that have no words and can’t be spoken of.

I will never do this. The person who found me. The pointless waste of resources looking for a crime that never happened. These are enough reasons, and there are more. But it’s what I’d want. I’ll settle for being composted and the results returned to the ground as close to the Mother Tree as possible. Nobody is guaranteed the life we want or the death we want. But that is the death I want.

But as I stand there I am aware of that promise, aware of the ancient threads under my feet tying death and life as essential parts of each other. Aware that should death happen there is beauty and love, not fear. How everything left of me can be absorbed into new life and timeless love. Aware how close I stand to the line, aware of the silent, patient presence of Death.

Death by now is an old friend. I’ve had too many close calls not to become acquainted. I once spent five weeks pretty much abandoned to live or die in a series of hospital rooms where for the most part I was unwanted. Doctors have said they’re surprised I pulled through without the ICU that time. I was alone for vast stretches of time, I was delirious and terrified. Death was there, though.

And I came to know Her as kind, caring, a friend. She was in no hurry. She can wait forever, She’ll find all of us one day. But when you sit close to her, sometimes you have choices nobody talks about. Where you could go with Her right away, or try and stay. And nobody would know. Trying to stay alive doesn’t guarantee life of course. I chose Death’s companionship, which doesn’t mean choosing to die. But every time, I chose to stay alive.

It’s odd that a vivid picture has formed in my mind of what Death would look like to me if she were human. She looks very much related to me, like an ancestor I’ve never met who strongly resembles many people on my father’s side of the family. Very old with long white hair. I guess she has some qualities in common with George McDonald’s multiple-greats-grandmother character in The Princess and the Goblin series. She’s very powerful, has the potential to be very kind and loving, and does not actually bear any ill will towards the living.

But She isn’t human and I imagine She looks different to everyone. I’ve never seen Her with my eyes, only had this vivid image of how She would look if human. But really my encounters with Death are more wordless and imageless and impossible to put down in writing, including that endless five weeks of Her. But I can feel when She’s hanging around me, and so can some of my friends. It always means something has slipped too close to completely guarantee survival.

Most people think of the survival instinct as something rooted somewhere in the brain. And there certainly is one there. But it goes deeper than that. All life from the first single-celled organism tries hard to live. Being alive is extremely difficult and takes work and energy. Without some drive for survival, nothing would bother. Every living thing has some version of this drive for survival.

And I am not just a brain, and my brain is not separate from my body, and my body is not just a carrying case for a brain. I’m made of all these cells, some working together, and all kinds of things. Each wanting individually and collectively to live. When I say I chose life, I don’t just mean my thoughts chose life. I didn’t always have enough thoughts to string that kind of choice together. My whole body chose life and fought hard for it and that’s why I’m still here. It seems arrogant to reduce myself to the little part of me that sits and reflects on things, then claim full credit. There’s nothing like delirium to show you the brain is just another body part. And when my mind wasn’t functioning right the rest of me still fought like hell to be here.

I’m well aware the things I’m saying could terrify people. But they are real for me. Death is welcome in my life. This is easily misunderstood, though. I don’t have a death wish. I used to. A grinding, unrelenting one that tormented me every second of the day and caused a big conflict with my survival drive, which I alternately thanked and cursed. That was a long time ago. Certainly long before I befriended Death.

Coming to know Death intimately has been one of the most life-affirming things I’ve ever experienced.

Posted in Being human, death, joy, Nature, redwoods

Dirt and plants and rocks MATTER.

Bear in mind, I remain firmly convinced that the ninth circle of hell is located somewhere in Fletcher Allen Hospital.  Or maybe hospitals in general.  And I don’t even believe in hell.  There’s a lot of great people working there, and I encountered many of them this time — including lots of nurses wearing bright red pins saying “WE’RE WINNING” — but a hospital is a hospital.

And I was stuck in a room I’d previously been massively delirious in towards the end of a five-week stay from hell.  This room:

A bare hospital room, facing the window.
A very bare isolated hospital room. Not bad or uncomfortable as rooms go, but alarmingly delirium-inducing in many of its qualities. Also unique on the whole ward so you can’t mistake it for any other room.

I was forgetting things.  Things like the redwoods.  I knew they existed but I couldn’t remember them.  I was forgetting who I was.  Large chunks of my normal thinking were falling out.  And I couldn’t fucking remember the redwoods.  I knew I should know them, but I didn’t, and it frightened me.

It reminded me too much of the blank delirium.  The kind where white blankness fills up more and more of the world until the world goes away, and you’re lost in the snow.  I didn’t want to be lost in the snow.

So I was looking out the window one day and I saw this:

Trees and plants and pathways viewed from a sixth-story hospital window.
Trees and plants and pathways viewed from a sixth-story hospital window.

There was a child running and playing down there.  I wondered how the hell you get down there.

A wonderful LNA — i’d name her, but I don’t want to invade her privacy — made it her personal mission to figure out how to get down there.  I heard her asking around all day.  She finally came in with a post-it with written instructions on how to get down there.  It involved a lot of weird back routes.  They don’t make it simple.  The hospital is actually several unrelated buildings kludged together by a maze of corridors, with that unexpected garden in the middle of it all.  I’ve explored a lot of the corridors, but I’ve never found the entrance to the garden.

Anyway, when my evening caregiver arrived to visit, the LNA and I were ready with a wheelchair to get me down there.  She went over the instructions with him, and he pushed me down.  We found it pretty easily, she gave good directions.  I’d actually been very close to the entrance before, and never known it.

It turns out it’s this place called Peter’s Garden.  It didn’t take much thinking it out to know that Peter must be someone who died.

A sign in a garden, reading: WELCOME TO PETER'S GARDEN. "What lies behind us and what lies before us are tiny matters compared to what lies within us." -Ralph Waldo Emerson. Donated by the friends ofPeter's FUNd Racer.
Peter’s sign.

You can read more about Peter and the garden here, it includes a link to a Powerpoint of the construction of the garden.  From what I understand, he died in his forties of cancer and his family and friends raised the money to put the garden in.  I heard later that the chemo ward overlooks the garden directly.

Anyway, I got up and walked around a little.

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When my feet touched living soil, I could remember the redwoods.  I could feel my body.  I could remember who I was.  I could feel the way things connect together again.

I still have big holes.

I still have gaps in my head that didn’t used to be there.

But something happened in my soul.

In the middle of that hell place, there’s life.  There’s dirt.  There’s plants.  There’s beauty.  There’s dead plants.  There’s amazing flowers.  There’s REAL.

Someone put it there, someone made it this way on purpose.

I’m really grateful to whoever decided to do that.  And to the LNA who made sure I could get down there when I was losing touch with everything that mattered to me.  It gave me back a lot of strength in a really scary situation.  It got me through a night where every time I closed my eyes I thought a bunch of black blobs were coming to eat me.  It got me through a tense, scary morning with an uncertain future.

The gaps are still there, the tenuousness of my health is still there especially now that I’m out of the hospital, the uncertainty is still there, and I’m not working with all the thinking I should need to survive what’s in store.  But I can feel who I am, where I come from, and that can mean the world.

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Posted in medical, Problems and solutions

I definitely stand with the local nurses union.

Mel wearing a button put out by the nurse's union at UVM Medical Center. It reads, "Put Patients First!" and in small print, "Vermont Federation of Nurses & Other Health Professionals AFT-VT".
Mel wearing a button put out by the nurse’s union at UVM Medical Center. It reads, “Put Patients First!” and in small print, Vermont Federation of Nurses & Other Health Professionals AFT-VT.

I was in the hospital for a month recently.  I was able to see the conditions that nurses were working under.  It was bad.  I am 100% behind their efforts to fight for their rights, which were gearing up even while I was hospitalized:  Nurses were carrying signs through the halls, going places with them, wearing buttons, talking about things.  This has been prolonged and their signs are now all over town.

Earlier this month, Seven Days VT published an article called Nurses, UVM Medical Center Remain At Odds Over Contract which said:

Amidst a tense contract bargaining negotiation, nurses at the University of Vermont Medical Center announced at a press conference Friday morning that they had filed a complaint against the hospital with the National Labor Relations Board. The nurses allege twenty labor violations, including unlawful unilateral changes to staffing grids and unlawful ordering of employees to remove union buttons.

[…]

Julie MacMillan, a registered nurse and the union’s lead negotiator, said the nurses feel the community should be aware of the problems at the hospital. She said in past negotiation cycles, when the hospital was not in as good financial standing, nurses took cost of living adjustments so that they could keep serving the community. But now, as the hospital reaps enormous contract margins, she said the nurses have had enough. MacMillan said the union has been inspired by the successes of other labor movements across the country.

I hope they meet all of their goals.  The conditions they’re expected to work under are ridiculous.  They are right:  This is a safety issue, both for nurses and for patients.  I constantly saw nurses having to fight just to do their jobs under the amount of work they were expected to do.  All the ones I saw were trying very hard to help all their patients, and couldn’t.  One said she spends half her time on the job not doing nursing care, but ironing out problems caused by the hospital bureaucracy.  Watching her, I believe it.

And the conditions really are dangerous to patients — I was frequently in danger not because of malice or indifference, but because they were having to spread themselves too thin.  Which results in things like not noticing I take seizure medications.  Or one situation where I could no longer perform a small but vitally important medical task I normally do for myself, a nurse offered to do it for me, and I had to explain to her that I greatly appreciated the offer but that there was no way she had the time or resources necessary to do it.  Most of the dangers I faced from the hospital this time were tied in some way to short staffing, not to anything malicious on the part of the staff.  Who went out of their way to help as many patients as they could as thoroughly as they could, but nobody’s superhuman, and the long hours and lack of sufficient staffing take a serious toll.  Nonetheless, people were being their own small, quiet versions of Vasili Arkhopov every day — following their consciences even when it might be easier not to, and profoundly affecting, even saving, lives as a result.

Which is why there are signs everywhere that read NURSES FOR SAFE STAFFING and the like.

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Nurses carrying signs, one reads “Safe staffing saves lives!”

Safe, if you’re wondering, means patients don’t risk death or serious harm from the lack of adequate staffing.  The nurses I met this stay were almost all amazing, dedicated, and trying their hardest.  But without enough of them, without the resources to do their jobs, that’s just not enough.

I really, really hope their negotiations succeed.

Posted in medical, Problems and solutions, PSA

Keeping Your Symbiotes Happy: How to TRY Not To Get the Dreaded Butt Plague If You’re Tube Fed (C Diff Prevention PSA)

c-difficile
A clostridium difficile bacterium. You don’t want this little guy taking over your guts. Even when it’s not deadly, it’s highly contagious and dangerous.  And it can be both deadly and antibiotic-resistant.

I just got over a gnarly C Diff (clostridium difficile) infection that lasted from approximately November until May of this year.  Here’s a link to the Mayo Clinic’s page on C Diff if you want to know more about it. It wreaked havoc with my health, including my ability to absorb the steroids I depend on for survival, and I was away from home then hospitalized for a long time.  I had thought C Diff was something you got only from antibiotics or contact with an infected person.  I didn’t know I was at risk from other factors, especially being tube fed nothing but formula.  I was wrong.  I want to tell you about the risk factors that exist, especially in tube feeding and how to prevent that.

This is gonna be a little long, but there’s a bolded section at the end that basically tells you which nutrients you need to add to your diet to be more protective against C Diff if you’re on an elemental tubefeeding formula as your main source of nutrition.

The biggest risk factor for C Diff is frequent contact with the healthcare system.  Antibiotics are a risk factor.  So are some other medications such as acid reducers, which I have to use in large quantities because of my gastroparesis, reflux, and aspiration risk.  But the one risk factor that intrigued me the most, because it fit with the onset of my symptoms, is being tube fed nothing but a tube feeding formula without supplementing it in certain ways.

All of this is reputable science, by the way.  This isn’t some kind of fringe thing.  So we all have little symbiotes in our bodies.  That’s symbiotic bacteria that live in our guts and often help us out with all kinds of things you’d never expect.  Some of our symbiotes help protect us against C Diff.  I know this may gross some people out.  I think it’s amazing and cool that we have little symbiotes living inside us and helping us.  I want to keep my little symbiotes healthy and happy.  But I might be a very strange person, I admit.

Here’s an excellent overview from the World Journal of Gastroenterology:  Tube Feeding, the Microbiota, and Clostridium Difficile Infection.  So basically there’s a lot of risk factors involved with tube feeding elemental formulas, like the Osmolite that is my main food.  One of those us that the elemental diets seem to feed C Diff pretty well on its own.  But one of those risk factors is that the elemental formulas don’t contain some of the crucial nutrients that feed the symbiotes that protect us against C Diff in the first place.  And that is something you can possibly change even if your main diet still has to be an elemental formula.

blendtecfood
A Blendtec blender with assorted vegetables and water, close to all you need to make soup for your feeding tube.

I got a high-powered blender many years ago because I was having weirdly intense and specific cravings for vegetables.  I got a Blendtec, other people might get a Vitamix or similar.  These blenders are expensive, and mine was a gift from a family member, but they are the only way to blend down food well enough to safely pass through a J-tube.  In addition to a blender, I got a chinois (a kind of heavy-duty strainer), which lets me filter out any remaining tube-clogging residue while pushing through as much thick stuff as I can.  I have had no problem getting the resulting blends down my J-tube as long as I blend thoroughly and use the chinois vigorously.

blendersoup
Asparagus and sunchoke soup, ready to feed all my hungry little symbiotes!

Anyway, I started supplementing my Osmolite diet with blended vegetables.  I just went with whatever vegetables I seemed to be craving.  And they were oddly specific cravings sometimes.  I’d never eaten sunchokes in my life, and suddenly I was eating sunchokes constantly.  There turned out to be reasons for this most of the time.  My symbiotes must’ve been yelling “We’re hungry!  Feed us!” in whatever way they knew best.  When I added the blenderized vegetables to my diet, I felt a strong sense of well-being and my doctors told me there are nutrients in vegetables that we don’t fully understand yet.  So they were fully supportive in what I was doing.

My developmental disability services agency had people in it who were helping me cook these vegetable meals.  We’d basically cook the vegetables as if it was a regular meal, then stick it in the blender with some water, then strain it through the chinois.  I know a lot of people compare these sorts of things to baby food, but I honestly think a better comparison is soup.  So I just called it vegetable soup.  And then I would periodically put small amounts of it down my J-tube using a feeding syringe, although you could probably use a feeding bag and pump if you did it right and made sure it wouldn’t clog any tubing.

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Putting some asparagus and sunchoke soup into my MIC-KEY button J-tube using a 60 mL feeding syringe with a white Christmas tree attachment.

Anyway, at some point the guy who was doing most of the cooking quit to take a different job.  And my access to vegetables started getting more patchy.  I think the agency thought that because I was on Osmolite already, food prep for real vegetables was a luxury.  We were all about to find out how wrong that was.

I didn’t connect it to the vegetables, but for a month or two of less vegetables I was feeling lousy and telling my doctor something was going wrong in my body that was gonna bite us in the ass if we didn’t work out what it was.  I didn’t know I was gonna get the butt plague, mind you.  I just have a good instinct sometimes about things going wrong in my body.  Without further information, though, we couldn’t find anything wrong.

So the vegetables stopped around September.  By November I had nasty diarrhea every day.  Like shart-level diarrhea.  Leading to both yeast infections and bacterial infections of the vagina just for extra fun.  There’s no pretty way of describing it.  The butt plague is a nasty, nasty thing.

I’ve always had some absorption issues, but the C Diff kicked those into high gear.  My absorption of my meds, including steroids, became erratic.  Understand:  I make no cortisol in my body at all.  You can’t survive without cortisol.  Not being able to absorb my hydrocortisone properly or consistently played havoc with my entire body and health status in ways I couldn’t comprehend.  And that’s besides the ever-fluctuating levels of seizure meds and other things that shouldn’t fluctuate.

Dehydration was obviously an issue.  The dehydration kicked into high gear one week when I got about half the developmental disability staff hours I’m supposed to get, mostly through subs who didn’t know what they were doing, and didn’t get any extra water for several days.  I nearly passed out, had trouble breathing, had to raise my steroids just to be able to breathe.  Wildly inconsistent steroid levels even with the high doses resulted in swinging from too much to too little steroids on a dime.  It got dangerous.  My body temperature started going outright hypothermic (94.3 was the lowest), I had more diarrhea because low cortisol levels will do that, and when my steroids were high it suppressed my immune system and allowed the C Diff to flourish even more.  It was loads of fun.

At some point I gave my doctor the Bat Signal (“I’m gonna die, this is not a drill”) and he found the C Diff quickly.  The antibiotics worked and then suddenly didn’t work and I was hospitalized.  I’d already been living away from home about a month at that point due to a combination of being unsafe living alone and being too stubborn to go to the hospital.  (They tried to get me to go to the emergency room for about two straight months before I allowed someone to call 911.)  I got really weak from a combination of dehydration, adrenal insufficiency, and congenital myasthenic syndrome, and realized I was going to pass out or fall (I have severe osteoporosis and broken bones can trigger adrenal crisis) or shit on my friend’s floor or something, so I let her call an ambulance.  I was hospitalized immediately and stayed several weeks.

In the hospital there were two or three main issues to sort out.  One was the C Diff itself.  Another was my steroid situation.  So we discovered the inconsistent absorption and I was put on steroids through my chest port instead of my feeding tube.  This vastly improved things.  But I was still on a much higher dose than I should’ve been.  It turns out that some of my meds might affect the metabolism of steroids.

But more importantly, I probably have an additional medical condition that can come along with adrenal insufficiency (and also two other things I have), and that responds to steroids.  It makes my heart race and I get out of breath when I stand up sometimes.  So I’m still on an ungodly dose of steroids — transitioned back to getting them through my gut, at least, though — which puts me at continued risk for C Diff among many other nasty things.  My severe osteoporosis (I’m 37, I’m told my bones are more like 95-115 depending on the bone, I’ve broken ribs by sleeping on them wrong and have a stress fracture in my spine nobody knows where it came from) is partly from the steroids.  I’m at high diabetes risk.  Steroids are the most dangerous meds I take and the most necessary meds I take.  It’s an ugly balance to have to strike.  There are no good answers and for many people with severe adrenal insufficiency it’s the steroids that keep us alive that ultimately shorten our lifespans.

Anyway, the most important thing for you to know are which nutrients your symbiotes need that you’re not getting in an elemental formula like Osmolite or Nutrin.  There’s basically three important ones, although I’m sure there’s plenty of others:

  • Insoluble fibers
  • Resistant starches
  • Oligopolysaccharides

You can look up which vegetables contain the most of those nutrients, and figure out how best to get them for yourself.  Remember those sunchokes I was craving all the time for no apparent reason for the first time in your life?  Sunchokes turn out to have more oligopolysaccharides than any other vegetable on the planet.  Yeah, my symbiotes have me well-trained, I guess.

So definitely look up which vegetables you can get those things out of.  And then I’d say go with a combination of that knowledge and what vegetables feel right to be eating.  You might not have that this just feels right thing and that’s okay.  But if you do, run with it.  Every vegetable I was craving (and they were weirdly specific and intense cravings) turned out to be high in at least one of these three nutrient types. Your mileage may vary.  And always check out the actual scientific information on these vegetables, your instincts are no substitute for that.  But my gut instinct (no pun intended) turned out to be shockingly accurate, and you might find the same.

My doctors, for what it’s worth, are 100% supportive of my efforts to get vegetables back into my diet by any means necessary.  They agree with me that this was a major risk factor in my getting a C Diff infection.  And once infected, always at risk for the rest of my life.  So this is a very important thing to try and prevent, even if you seem to have no symptoms.  C Diff can be dangerous, is highly contagious (I was on isolation protocol my entire hospital stay even after I got over it) and can be resistant to antibiotics.  Even healthy people are turning up with C Diff these days.  Trust me, C Diff is something you absolutely do not want if you have any way of preventing it.

So if you remember nothing else from this post, remember those three nutrients:

  • Insoluble fibers
  • Resistant Starches
  • Oligopolysaccharides

Find ways to get these things into your body if at all possible.  Keep your little symbiotes happy, they need you and you need them, that’s how symbiosis works!  And if your symbiotes are happy, you’ll likely be happier (and healthier) too.  And stand a better chance of fighting off the Dreaded Butt Plague.

Photo on 5-14-18 at 5.38 AM
I am now happy, presumably C Diff free (although I have to watch out for it forever now), on a stable dose of steroids, and at home with my kitten for the first time in a couple months.  Try not to let any of this happen to you.  It was gnarly, it was dangerous, it could’ve killed me, it’s very contagious, you definitely don’t want this.