Posted in Being human

What fiery really means.

My hand with a large fiery-looking amber ring on it, as well as a turquoise ring with two hearts.
My hand with a large fiery-looking amber ring on it, as well as a turquoise ring with two hearts.

Someone replied to one of my posts praising my fiery and caustic spirit.

I wasn’t aware I was caustic.   I’m pissed enough about the developmental disability system at this point I’m sure I could be coming off that way, I just wasn’t aware of it.

But fiery, yes.  But fiery is so much more than angry, and I want to talk about what fire means in my life.  Because even I misunderstood it until it nearly wasn’t there, several times.

You can’t live without fire. Fire is vitality, fire is the entire force of your life. And I wrote something a long time ago about fire. And I’m gonna write it again right now:

And I reached inside of myself. And I found that fire. And now that fire is burning its way out from the center and into the rest of me, as bright as the sun.

I associated fire with the kind of anger problem I used to have, and thought it was good riddance when the anger problem disappeared, but the fire went into hiding at the same time.

But fire isn’t about anger.

Fire is about vitality and passion.

And coincidentally, right as I was reaching inside myself for that fire, I was also going onto steroids for adrenal insufficiency. And the adrenal insufficiency had, for roughly 6 years, muted my ability to feel the fire that’s always been there.

And when I went onto the steroids, fire came back, only this time it was beautiful, not destructive. It was beautiful and it was life coursing through me, and it was a sensual appreciation of everything around me, and it was everything I’d lost.

And that fire gave me a backbone I hadn’t had, and a strength, and a focus.

I was wrong, before.

Because I need that fire.

Everything is different. Everything.

And the fire means this life goes through everything I do and see, just this intense, fierce, life.

In a redwood forest, fire is what makes the trees burst out of the ground, rocket towards the sky, and make even more of themselves on their own branches to rocket towards the sky with them. Fire is what comes from the sky and gives life to all the plants, which give life to everything that lives from the plants. Beneath the ocean, fire is what comes from beneath the earth through volcanic vents to allow life to flourish in the depths.

We can’t have life without fire.

So that’s basically a combination of things I wrote about fire years ago when I finally got treatment for my adrenal insufficiency. I had been slowly drained of fire for years until I almost died. So I know that without fire, you can’t even breathe, you can’t even move.

I got a scary reminder recently what it’s like to live without fire, not enough fire. Because when I had C. diff, my already messed up guts would not give me a consistent dose of hydrocortisone. They would absorb it so inconsistently that I would have too much sometimes, not enough others, and no way of predicting how much would absorb, and how much would just not happen.

I wrote a series of messages on my Facebook when I was dealing with a extreme lack of fire. A lack of fire that comes from lack of cortisol, that is not being properly replaced with the right amount of steroids.

Here are some quotes from that:

I am not a robot. I am not a robot. I am not a robot.

I’m trying to remember things connected with being alive and keep threads to how I feel when not washed out and 2-D.

I don’t want to fade until Anne only senses me as a wispy thing and I forget fire and passion and motivation ever existed.

I’m scared of forgetting again what it means have even marginally sufficient cortisol. I’m scared of settling.

Feeling half dead should not be acceptable. There should be fire.

I am tired of having the “I am alive” feeling sucked out of my body randomly all day and people thinking it’s good enough.

Trying to remember what 3-D full-color emotions feel like and that their absence means something is wrong. DON’T GET USED TO THIS.

The ebb and flow of THIS med dose is intolerable swinging between Spockish and Spock.

I still have emotions but they’re intellectual and in the distance. I can’t feel them in my body.

Losing visceral motivation makes it hard to move or ask for help. Can’t they see the danger? Hold tight with mind and await meds.

Alarm bells flash and flash and flash and flash and flash and flash. Can’t anyone else around this place hear the silent bells?

It’s weird being propelled more by a deep instinct warning of wrongness getting wronger than by any felt emotion.

 

See, I was losing fire again. But it was happening with enough inconsistency that I could feel it and I could feel how wrong it was. Because sometimes I would have enough fire and sometimes it felt the fire almost went out.

Before I went into the hospital, I actually had a night where a friend had to help me get my steroids. Because I knew something was wrong. I could not think I could not put thoughts together. I could not feel anything anymore in terms of emotions. And all of that motivation to get you to get up and go when you need to get up and go was not there. And I was barely able to even alert my friend that something must be wrong.

And I had those completely silent but overpowering alarm bells going off. They come from something deeper inside you. But those alarm bells were barely enough to get me able to communicate what was happening. My friend had to put together the rest, and then she had to persuade me forcefully to get up. Because even though I knew my life was in danger at that point, that was not enough to get me out of bed and heading toward the fridge to get my steroids.

This was not because I didn’t want to be alive. I was not depressed. When you don’t have enough cortisol, your everything goes flat. Your emotions, your motivation at all, turn two-dimensional. You can’t even, at least at that point, I could not even string a thought together. Thoughts were these weird scattered pieces of things off in the distance somewhere.

So I have very intimate knowledge of what fire is and why it is necessary. And fire means a whole lot more than getting angry about things. You need fire to get angry. You need fire for everything.

You need fire for creativity. You need fire for passion. You need fire for emotion. You need fire for feeling alive and vitality. You need fire for resilience. You need fire for physical survival. You need fire for all these things and more. Because fire is life. And I have had the fire almost drained entirely out of be at times, and there is nothing to show how much you need fire more than the contrast between not having it and having it. Because it is night and day.

So, yes, I need to stay fiery. But I mean that in the sense that I need to stay alive, I need to stay connected to my body, I need to stay physically viscerally present in the world, all my feelings all my thoughts all my life all my creativity playing out physically in who I am.

Fire is the life inside all of us.  We can’t exist without it.

Posted in medical

Big fat hairy deal: Why I wasn’t diagnosed with a deadly disease until it became truly life-threatening.

I recently read “Doctors Told Her She Was Just Fat.  She Actually Had Cancer” from Cosmopolitan.

I didn’t know the full story behind this until I talked to my doctor recently, but I do have a similar story to tell.

I have severe adrenal insufficiency.  By severe, I mean that by the time they actually checked my cortisol levels, they couldn’t find enough to measure.  Nor any ACTH to measure either.

There had to be some cortisol or I would’ve died.  But I was already waking up nightly too weak to hold my head up, move my hand, or breathe on my own (I had a bipap with central apnea settings that saved me by going into vent mode, but the alarm would go off endlessly because even awake I couldn’t get a breath).   So it was a close call by the time they found it, and I’d been aware I was headed towards dying for awhile by then.

It turns out I was tested four years earlier.

It turns out that my cortisol levels were low — not as low, but low enough they’d normally be of concern — during the test.

It turns out the woman who did the test did not bother to tell anyone this or do further testing to confirm something was wrong.  Even though my health was already going to shit in a major way at the time.

Why?  Because I’m fat and hairy.  Basically.

She didn’t test my cortisol just randomly.

She didn’t test my cortisol because she was concerned about adrenal insufficiency.

She tested my cortisol because she looked at my body type and assumed I might have Cushing’s syndrome.  Which is the opposite of adrenal insufficiency:  Too much cortisol.

I have had more hair on my body than the average female for a very long time.

I have fat in my abdomen and in other areas people see as Cushing’s-esque.

I have fragile skin and stretch marks because I’m hypermobile (I’ve had them since I was a skinny kid).  Nothing to do with Cushing’s.  Lots of people in my family are hypermobile.

Also practically everyone in my family is hairy and has this fat distribution pattern.

None of us have Cushing’s.

I can’t fault her for checking me for Cushing’s.  Generally every new gynecologist I see freaks out about my hormones until they figure out there’s not much abnormal about them.

But.

When the test came back low on cortisol.

She didn’t tell someone.

She didn’t retest.

She didn’t order further testing such as an ACTH stimulation test.

She didn’t forward this information to other doctors.

She just thought to herself, “Well it’s not high so it’s not Cushing’s so no problem.”

Four years before I was diagnosed.

Four years before I was absolutely sure I was gonna die before they figured out what was wrong.

FOUR YEARS because I was fat and hairy and looked like every other person in my family who doesn’t have Cushing’s.

Of course given the amount of steroids I’m on now, this poses a new question — how would we tell if I developed Cushing’s from my steroids?  But I assume it’s gonna be because of something other than the fact that I look like I’ve always looked.

(And apparently while I was in the hospital, an on-call doctor asked my doctors what on earth they’d done to me with the steroids.  My doctors had to say I’d always looked like this.)

Just take a look at these photos for a moment:

ronmelbody.jpg
My dad and me standing facing forward.  Same body type.
dadmelsideways.jpg
My dad and me standing facing sideways. Same body type.
dadmelface.png
My dad’s and my faces.  Same basic face, same basic areas of hairiness (unibrow, upper lip, chin), he’s just hairier.  (Also his face is thinner than usual there because he has cancer in that picture.)

My body type is basically exactly a shorter version of my father’s.  We’re just fat hairy people who carry a lot of weight around our bellies, among other places.  So are lots of people in my family.  Nobody in my family has Cushing’s.  As I said, it’s fine to check, prudent to check.  But when the test shows the opposite, shouldn’t someone be concerned before it becomes a life-threatening medical issue?

This isn’t the only time being fat has delayed a diagnosis, either.  It delayed my gastroparesis diagnosis, because they wouldn’t believe I hadn’t eaten until I was visibly not eating in the hospital and losing even more weight.  I lost a total of 75 pounds before they treated the combination of gastroparesis and adrenal insufficiency that was causing the weight loss — and I was still fat after I’d lost the 75 pounds.  I just weighed 170 pounds instead of 245.  Still fat.  Still a dangerous amount of weight to lose in a hurry.

But it looks like I’m gonna have to deal with “Are you sure this isn’t Cushing’s?” thing the rest of my life probably because I’m not gonna stop looking like this anytime soon, I’m not gonna stop taking steroids anytime soon, and because Cushing’s can be a real possibility when you’re on steroids for adrenal insufficiency.

But the amount that doctors can discriminate based on appearance — and it goes way beyond weight, especially if you add in sexism — is alarming as hell.  As well as the fact that with my old gynecologist, the bias was unconscious as far as I can tell, so it’s not like she was able to say “Hey wait a minute…”

Or in old doctorese medical chart slang, I’m FLK-JLD:  Funny-Looking Kid, Just Like Dad.

 

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.

tubefeedsoup.jpg
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.