Autistic catatonia + adrenal insufficiency and/or myasthenia gravis.

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So as far as I know I’ve been/had:

  • Autistic since birth, probably since before birth, knowing the current science and the repetitive movements my mom felt inside her. But definitely atypical stuff from day one, which are all small things high when added up in retrospect amount to autism. Diagnosed age 14, again ages 18-19.
  • Autistic catatonia starting around age 12, diagnosed when the first major paper on it came out while I was 19. (Diagnosed by the same shrink who’d known me since I was 14.)
  • Neuromuscular junction disorder, probably myasthenia gravis or hereditary myasthenia, since I was 18 or 19. Diagnosed, provisionally, age 33 using a single fiber EMG.
  • Adrenal insufficiency, probably starting around the age of 27, Diagnosed at age 33 by which point it had become so severe they couldn’t find cortisol or ACTH in my blod. They assume it was there or I’d be dead, but they also assume I wouldn’t have survived much longer.,

So I had this big health crash when I was 27. One of the few measurable things we knew at the time was that my galvanic skin response, a measure of physical and emotional stress, went from very high to almost nonexistent. But we didn’t get around to figuring out it was adrenal insufficiency until much later, after way too many close calls in the hospital where I’d be seen for other conditions but be much sicker than I ought to be for these conditions.

I want to be clear I am talking about adrenal insufficiency. Not adrenal fatigue. Adrenal fatigue is a catch all term used by quacks for anyone experiencing fatigue, and requires no actual testing to confirm it, or bogus testing. It is dangerous because it prevents people from getting treatment for what they really have (which may even be genuine adrenal insufficiency) and can result in people getting strong steroids that are dangerous to the human body, who don’t need them p. vAdrenal insufficiency is where your body is not making enough cortisol and you can die from it. It’s usually easy to measure. I was diagnosed by a blood cortisol test, a blood ACTH test, another blood cortisol test for a baseline, and an ACTH stimulation test. That’s how real adrenal insufficiency is generally diagnosed.

Anyway my point is; some of my autistic catatonia traits have gotten better ever since the exact time of the health crash. In particular, I freeze for less often and for shorter durations. And I don’t anymore run around the house bouncing off the walls without any ability to control my movements. These things can happen they are just much rarer. I also have fewer full-body stims and rocking, and more hand-based stims. I still have trouble initiating movements, combining movements, crossing boundary lines, and doing things without being promoted verbally or physically. But I think I’m a little better at those things too.

This makes me wonder if there’s something about stress or cortisol (or ACTH) that plays a role in autistic catatonia. But I don’t really know who to ask. Lorna Wing is dead. I don’t trust Dirk Dhossche. I guess maybe Martha Leary and David Hill could shed some light on it, but I’ve lost their email addresses. There’s not a lot of researchers looking into autistic catatonia these days, even if there’s more than when I first showed signs.

Also, if you’re autistic and you have both autistic catatonia and adrenal insufficiency, I’d be interested to compare notes. But I don’t know anyone with both, so I’m not holding out a lot of hope there. I’m mentioning myasthenia gravis too just because the symptoms overlap with adrenal insufficiency to the point we were surprised to find I probably have both, not just one or the other. So it could be either one interacting with the autistic catatonia.

Also please don’t give me crap for using medical terminology here. It’s the only terminology I have and without it I couldn’t communicate.

 

Deliberately stressing me out is, at this point, assault.

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That’s how I see it anyway.  I don’t mean disagreeing with me.  Anyone who wants to disagree with me can disagree with me as much as they want to.  I’m talking about personal attacks, and you people know who you are by now.

I have severe adrenal insufficiency.  For those who don’t know what that means, it means that my body is not making cortisol.  I have to replace all of my cortisol with a steroid called dexamethasone, and I will be on dexamethasone for the rest of my life.

Cortisol is one of the hormones that is called a stress hormone, meaning it gets used when you are under physical or emotional stress.  This means that people with adrenal insufficiency have to be extremely careful when our bodies or emotions are under extra stress.

For instance, I recently had aspiration pneumonia requiring antibiotics.  This means I had to triple my dose of dexamethasone to avoid what’s called an adrenal crisis (click through to Wikipedia if you want the details).  Adrenal crisis is how people with adrenal insufficiency tend to die.

It’s not just physical stress that can cause an adrenal crisis, however.  It’s also emotional stress.  Wikipedia’s commentary on prevention of adrenal crisis is, I quote:

Adrenal crisis is triggered by stress and hence people with adrenal insufficiency need to avoid stressful situations.

That’s very important for managing adrenal insufficiency.

I recently found out that my father is dying of cancer.  We don’t know how long he has.  It has metastasized into several organs to the point where they haven’t been able to trace it back to wherever it originated.

My mother, his only caretaker, has a more severe form of a neuromuscular junction disorder (probably myasthenia gravis) that I also have.  She has to not only take care of him, but do all the jobs around the house that he used to do.  Before all this started, she had a myasthenia crisis and almost died in the ICU when she stopped breathing earlier this year.  Doctors have warned her that she’s not able to handle this and that she needs to move closer to a hospital.

My parents recently had to temporarily evacuate their home due to a forest fire that went right past it.

My grandmother has been slowing down and in poor health, but in a vague enough way they don’t really know what’s going on.  She says she’s willing to take antibiotics, but draws the line at invasive treatments like surgery, if they figure out what’s going on.  She says she’s led a good long life and she’s at peace with death.

I am under more stress right now than I have ever been in my life.  I have to consistently take a higher dose of dexamethasone than normal, just to be able to minimally function.  My endocrinologist says I’m doing the exact right thing.  But taking the extra dexamethasone doesn’t magically make the stress or its effects and dangers disappear, it just makes you safer.

I reserve the right to delete whatever posts I want for whatever reasons I want.

I reserve the right not to explain to you why I’m deleting your posts.

I reserve the right not to owe any of you an explanation for anything I do on this blog, or in my life in general.

And if you come here deliberately trying to antagonize me — and you know who you are, because you’ve been doing it for years — I will treat it the same as if you walked up and tried to start a fistfight.  Because right now, more than ever, any stress can have a catastrophic effect on my health.  Adrenal insufficiency is the worst disease to combine with stress, and myasthenia gravis doesn’t help either, especially now that I’m going on Cellcept (an immune-suppressing drug).  And don’t try to tell me these diseases aren’t real, my doctors who in both cases did the labwork personally, will laugh in your face. And to be abundantly clear it’s adrenal insufficiency (i.e. they could not find cortisol in my blood at all), not adrenal fatigue (i.e. a condition used by quacks to blame literally any symptom on, regardless of your actual hormone levels, which then puts you in danger because you’re not getting treatment for whatever the real disease is).

So if you disagree with me, disagree with me.

But if you’re here to antagonize, to bully, to start fights, with a chip on your shoulder, to threaten me, to accuse me of not really being disabled, to deliberately trigger my PTSD, and all the other things that stalkers and trolls like to do for fun?  Fuck off back where you came from and never bother me again.  And understand that if I actually enter an adrenal crisis because of stress you caused, then you are partially responsible for what happened.  I guarantee you the adrenal insufficiency is 100% the real deal, no matter what you think.  And people who know me will view you as responsible.  If you have enough of a conscience to care about things like that, then think about it before you pick fights with me for fun.  I have enough going on right now without that.  Have some basic human decency for once.

Lock and Key

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If I could hand you just one thing
It would be a Mason jar
Filled with mud
Collected at twilight
On a rainy day
From the ground
Underneath a nurse log
In a redwood forest
In San Mateo County

If I possessed this Mason jar
It would be my most prized possession
I would sleep curled around it
Every night, all night long
I would keep it always
Closed up tight as it could close

And I would hand it to you
So that you could see all my secrets

Because only a trustworthy person
Would be able to find my deepest
And most beautiful secrets
In an old Mason jar full of mud

Anyone not fit to find them
Would never see them in the first place

Mud is the perfect lock and key to my soul

Almost Alike: A Medical Cautionary Tale

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Blue medical bracelet with a medical symbol in white and the words "Adrenal Insufficency" on a metal plate.

Medical bracelet that says “Adrenal Insufficiency”.

I’ve been thinking about medical stuff a lot lately, so apologies if my posts tend towards the medical for a little while.  It’s what happens when you suddenly realize how lucky you are to be alive, and how close you came to death.  My father’s cancer has me thinking about life and death and medical care a lot, too.

In my dealings with doctors, I have found that they like the solutions to their problems to be neat and tidy.  In particular, they want there to be one diagnosis that explains all the symptoms they’re observing.  They want their patient to have that one diagnosis, and if their patient shows signs of more than one thing, it fouls up everything the doctor wants.

Case in point:  I had this neurologist at the headache clinic.  I told him that they strongly suspected my mother of having myasthenia gravis, or hereditary myasthenia.  Both are neuromuscular junction diseases that cause specific muscles to wear out quickly as you use them.  So for instance my eyes start out tracking the same object fairly well, but as time goes on, they drift outwards leaving me seeing double.  I had told my neurologist all about this, and about other muscular problems I’d been having.

I don’t remember why myasthenia came up, but I told him I was going to start on Mestinon, a medication that treats myasthenia.  His response was swift and a little annoyed:  “It’s not going to do anything.  I don’t think you have myasthenia.” 

“Why not?”

“Because people with myasthenia have trouble with specific muscle weakness. You have generalized weakness.  It’s not the same thing.”

He explained it as if I didn’t know this.  But he also explained it as if I hadn’t told him time and time again about the specific weakness, that was separate from the generalized weakness.  As if I hadn’t told him things were more complicated than he was expecting.

He offered to run an EMG but told me the results would be negative because “You just don’t have myasthenia gravis.”  I declined the testing.  I don’t like to be tested under circumstances where the doctor has already determined what the results are going to be.  Plus, I’d just been through an invasive procedure that left me in horrible pain for weeks, and I didn’t feel like being poked and prodded again.

But I did try the Mestinon, and it did make a difference.  It was subtle at first.  I could walk around my apartment without falling.  My eyes tracked things better, and for longer, before the double vision kicked in.  It was things like that.  The more Mestinon we added, the better those things got.  So it seemed my headache doctor was wrong, and there was something real about the effects of the Mestinon.

But in other areas, I was getting weaker.  In fact, as far as I could tell, I was dying.  I was hesitant to tell anyone this fact, because it felt like a fairly dramatic thing to announce.  But I’d known terminally ill people who had more energy than I had at times.  And I have instincts that tell me when something is going badly wrong.  Something was going badly wrong, and it went along with that more generalized muscle weakness.

I’ve already told the story of how I got diagnosed with severe secondary adrenal insufficiency.  And that’s what happened.  They found no measurable evidence of cortisol or ACTH in my blood.  When they flooded me with ACTH, I made cortisol, but not as much as expected.  Meaning my pituitary gland is not making enough ACTH to tell my adrenal glands to make cortisol.  And this was the reason for, among many, many other symptoms, my severe muscle weakness that affected my entire body.

I went into treatment for adrenal insufficiency and everything seemed to be looking up.  No longer bedridden.  No longer required to use a wheelchair for anything.  Not that I minded these things so much when they were happening, but it’s nice to be able to get up and walk up and down a flight of stairs when you want to.  It feels good to be able to exercise, after six years of bedrest.  Dexamethasone makes me feel alive again, instead of waiting for the next infection to kill me.   I feel strong, and sturdy, and robust, in a way I haven’t in years, and my friends sense the same thing about me.

The only problem?  Not everything went away.  I still had weakness in specific muscles.  I’d been referred to a new neurologist at the same time they were testing my cortisol.  This neurologist never pretended he had any answers.  He was simple and methodical in the way he worked.  He would come up with a list of every possibility, no matter how remote, and then he would run tests for every possibility.  This made me trust him in a way that I didn’t trust my migraine neurologist.  So I let him do any test he wanted to do.

Many of the tests, he came in and did them himself, which is unusual for a doctor.  Usually they delegate that stuff.  He did a regular EMG that turned up nothing, and I thought “See, my mother didn’t have an abnormal EMG either, so whatever we have isn’t going to show up on tests.”  Neither of us showed up as having the antibodies, either.  I began to think this was going to be one of those things that we never solved.

Then he called me in for something he called a single fiber EMG.  He was going to stick a wire into my forehead and measure something about the muscles.  I remember that on that day I had a lot of trouble even holding my head up on one side, and that I was seeing double.  He stuck the wires in, made me raise my eyebrows and move my eyes around.  There were a lot of electrical noises.

At the end of the test, he told me he wanted to see me as soon as possible because the result was abnormal.  The muscles were firing asynchronously. 

I didn’t know what that meant, but a week later I was in his office being told that I probably did have a neuromuscular junction disease after all.  Probably myasthenia gravis, possibly a much rarer hereditary form of myasthenia.

And to think that literally a couple weeks before I got the single-fiber EMG, my regular doctor and I had been discussing whether I really needed to be on Mestinon anymore.  We thought maybe my only real problem had been the adrenal insufficiency all along, and that my response to Mestinon might have been some kind of placebo effect (even though I don’t seem very prone to that effect even when I want to be).  Even I was starting to fall prey to that idea that a diagnosis is just one thing.

Right now, we don’t really know what exactly my diagnosis is.  We know for certain that I have secondary adrenal insufficiency.  And we are pretty certain that I have a neuromuscular junction disorder, and the most common one of those is myasthenia gravis.  (I’m just going to refer to it as myasthenia gravis for the rest of this.  Because it’s shorter than saying “the thing we think is myasthenia gravis maybe”.)

But the important thing — the thing a lot of doctors miss — is that there is not one diagnosis here.  There are at least two diagnoses, possibly more.  This is not the first time, and it won’t be the last time, that I’ve had doctors miss something fairly obvious because they thought that the simplest explanation is always a single diagnosis. 

I still remember back when I was dealing with three different diagnoses that affected movement in different ways:  Adrenal insufficiency, myasthenia gravis, and autistic catatonia.  And any time we’d try to bring up a symptom of one of them with a doctor, they’d bring up a “contradictory” symptom from a different one of them, and that would mean that… it couldn’t be myasthenia gravis, because sometimes I froze stiff instead of limp, because I also had autistic catatonia.   And it went on like that for years, where every condition I had was ‘contradicted’ by some other condition, so many of the doctors refused to see the complexity of the situation.

Sometimes that resulted in situations that were almost funny, but other times it could turn deadly.  There was a time I was hospitalized for aspiration pneumonia connected to gastroparesis, and my doctor refused to treat me for anything other than the pneumonia.  So I had collapsed in my bed after vomiting so much that all the muscles involved had gone limp and I was starting to have trouble breathing.  In retrospect we think it was the start of an adrenal or myasthenia crisis, and that I belonged in the ICU.  But at the time, the hospitalist simply refused to treat anything that wasn’t pneumonia.  So I had to lie there totally immobilized, delirious, and hallucinating, wondering whether I was going to survive, for days on end.  All because a doctor was only willing to think about one condition at a time.

Over the years, I’ve picked up an impressive collection of diagnoses.  Many of them are based on symptoms and my response to treatments.  But some of them are based on hard-core medical tests like high-resolution CT scans — things you can’t confuse for anything other than what they are.  I’m going to list the ones that  were diagnosed by those hard-core medical tests, and understand I’m listing them here for a reason:

  • Bronchiectasis (high-resolution CT scan)
  • Frequent bowel obstructions (x-ray)
  • Central sleep apnea (sleep study)
  • Obstructive sleep apnea (sleep study)
  • Early-onset gallbladder disease (ultrasound)
  • Exotropia (eye exam)
  • Gastroparesis (gastric emptying scan)
  • GERD – reflux (barium swallow)
  • Esophageal motility problems (barium swallow)
  • Dysphagia (barium swallow)
  • High cholesterol (blood test)
  • Hypermobility syndrome (Brighton criteria)
  • Myasthenia gravis or related condition (single fiber EMG)
  • Secondary adrenal insufficiency (cortisol test, ACTH test, ACTH stimulation test)
  • Urinary retention with spastic urethra (urodynamic testing)

So this is fifteen different conditions right here, that there is no possible way that I don’t have them.  They’ve been tested for, the tests are valid, there’s nothing unusual about the tests I was given, they exist.  I’m diagnosed with a lot of other conditions, but even if we pretended that those conditions turned out to be misdiagnosed because some of the diagnosis was subjective… I’m still left with fifteen conditions here that are very much real.  Some of them are more serious than others.  But many of them are difficult and complex both on their own and in combination with each other.  (Also, many of them went years misdiagnosed because doctors refused to even test me for them, believing that a person with a developmental disability or a psych history couldn’t possibly be telling the truth about their own symptoms.)

Now imagine you’re a doctor, and I’ve walked in your door, off the street, with no medical history.  And I’ve got the symptoms of all of these fifteen conditions.  Some of the symptoms are severe enough to be life-threatening.  And your very first instinct is to try to find one condition that accounts for all of these symptoms.  You’re going to be looking for a very long time, and you’re going to be lucky if I don’t die before you figure it out.

Of course, it’s still possible that there really is one condition that explains all this.  Or at least, a small handful of conditions.  There are many genetic conditions that can cause problems all over your body, and they can be notoriously difficult to pin down.  But for the moment, we’ve had to diagnose all of these things separately in order to get a handle on how to treat them. 

It may be there’s some genetic condition that causes neuropathy (my mother and I both have symptoms of autonomic and sensory neuropathy), which could in turn cause the gastroparesis and esophageal motility problems (and dysphagia, and other things that aren’t listed above), just as one example.  But right now we don’t have that information.  Right now we just know I have gastroparesis, and that it doesn’t play well with reflux and bronchiectasis, and that if I hadn’t gotten a feeding tube in time it probably would’ve killed me.  There could also be something behind the adrenal insufficiency, but that damn near did kill me a number of times before we even knew enough about it to put me on dexamethasone. 

And that’s why it’s important that medical professionals not restrict themselves to a single diagnosis when they’re looking at what’s going wrong with someone.  If you see symptoms that look contradictory, then you ought to be wondering if you’re looking at more than one condition at once.

If there’s one thing I have noticed, having been in and out of hospitals for a long, long time… it’s that my roommates are usually people like me.  They’re people with multiple medical conditions all at once.  They’re not textbook illustrations of a single condition in all its pristine glory.  They’re a mess, just like me.  Like my roommate who had both Lesch-Nyhan and myasthenia gravis (and was a woman, which is rare for someone with Lesch-Nyhan in the first place).  They really treated her like crap, too — they wouldn’t believe a word she said about herself, unless they could verify it from some outside source, which they always did, but still never trusted her.  Sometimes I heard her crying after they left.  At any rate, I can’t remember a single hospital roommate who had only one condition, unless they were in there for a routine surgery.

Which tells me that those of us who end up in hospitals on a regular basis, at least, are people with complicated medical histories.  Not people who just have one simple thing that can be figured out.  Which means that no hospitalist should ever do what one of mine did and say “I’m only treating the pneumonia, nothing else matters, no matter how bad things get.”  I’m really passionate about this issue because I’ve seen how close to death I’ve come, how many times, just because everyone wanted my body to be simpler than it was.

Maybe the problem is that we train doctors too much on textbooks, and on the people who most resemble textbooks.  We don’t want to confuse them with too much, all at once.  So they grow to look for the one explanation that will explain it all, instead of the fifteen or more explanations that will explain it all.  And in the meantime, their patient could die while they’re waiting to get properly diagnosed.

And that’s the part that worries me.  I’m very lucky to be alive.  My doctors know I’m very lucky to be alive.  And I have a pretty amazing team of doctors.  I have a great GP, a great pulmonologist, a great neurologist, and a great endocrinologist.  These are doctors who are willing to listen to me when I know more than they do, but also willing to argue with me when they know more than I do, it’s the perfect combination. 

My GP has been here since I moved to Vermont, and he is known in the area as one of the best doctors around.  We have our disagreements, but he always explains his decisions to me, and I always explain my decisions to him.  We respect each other and that makes everything work.  He has done his best to stand up for me in situations where my social skills have caused problems with other doctors.

My pulmonologist is amazing.  She always anticipates situations where I’m going to face discrimination, and she’s always ready.  When she knew I was heading for a really bad pneumonia, she had my lungs CAT scanned to prove the pneumonia was there, because she knew nothing less than that would get me admitted to the hospital.  And even then it took all she and my GP could do to get me into the hospital and keep me there long enough to get me a feeding tube.

I’m new to my endocrinologist, but he’s clearly really good too.  He’s been helping me through the first stages of being diagnosed with adrenal insufficiency, including things as difficult as when to stress-dose and how much.  He’s given me the confidence to figure out on my own the amount of steroids I need to give myself in physically or emotionally stressful situations.  That’s a key skill you have to have to avoid adrenal crisis, and I think I’ve finally got the hang of it.

My neurologist is also new, but he’s clearly highly competent.  There’s nothing flashy about him or anything.  It’s not like he has some kind of flashy swagger like you see on TV shows.  He’s very quiet.  What he has is the ability to be mind-bogglingly thorough.  He listens to everything you have to say, he asks very careful questions, and he takes very careful notes.  Then he thinks up every possible condition that could result in the symptoms you have, no matter how rare or improbable it seems.  Then he figures out which ones are the most important to test for first.  And then he pretty much tests you for everything.  If there were two words for him, it would be methodical and thorough.  And it’s paid off — we now know I have something similar to myasthenia gravis, even though all the signs were pointing away from it for awhile.  Like my GP, he’s one of those doctors that other doctors hold in very high regard.  I can tell by the way they talk about him.

I wanted to make a point of talking about these doctors, because the point of this post is not to bash the medical profession.  These are people who have saved my life.  These are people I have built a relationship with over the years, or am in the course of building a relationship with now.  I’ve had plenty of truly awful doctors, but I’ve had a surprising number of truly great ones as well.  Most are somewhere in the middle.  But the great ones are the ones I owe my life to, many times over.  They have done things for me that, I am sure, they have never even told me about, and probably never will.

But all doctors, no matter how great, need a reminder that medical conditions don’t come in neat, orderly packages the way the textbooks make them sound.  Most disabled people and people with chronic illnesses have multiple conditions, not just one.  Often, these conditions have symptoms that can seem to contradict each other.  And even when there’s one overarching condition that causes all of them, there’s a good chance you’re going to need to find all the smaller conditions before you can put the puzzle together.  Many times, finding all the smaller conditions is a matter of life and death.  People simply can’t wait around to find the perfect most elegant answer when we’re going into adrenal crisis or myasthenia crisis on a regular basis.  Maybe there’s a reason I have adrenal insufficiency, and maybe one day they’ll find it, but for now I need to be on dexamethasone so I don’t die in the meantime.

Unfolding

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Me with Fey sitting on my shoulder, and a brown and yellow afghan in front of me.

Me with Fey sitting on my shoulder.

Sometimes I want to unfold
The beauty of the world
As if it was the most intricate
Origami flower
That had ever seen the light of day

Then I want to wait
And wait
Until the flower blooms for real
Until its velvet black blossoms
Tinged with purple edges
Grow fuzz that you can run your hand over

And I want to hand it to you
And watch you rub the fuzz
Against your cheek
Against your lips
Against your nose —
The yellow-black stamens tickle

And then fold the flower
Back into paper
And put it in my pocket
For safekeeping

I would make more of them
And write secret notes
That only some people could read

They would say things like:

“The most beautiful things
Are concealed all around you.”

“You are a flower and
This is how you become real.”

“You are unfolding
Just like this.
Don’t hurry,
Don’t wait.”

I would hide them in plain sight
And I would hide them in places
That only the curious and observant
Would bother looking

I would hide them in places
That can only be found
When doing shit work
For 22 cents an hour

I would hide them so that each person
Stood a chance of finding at least one
Just one
That told them what they needed to hear
Right now
Just then

Unfold them, they become real flowers
Fold them, they become folded paper
You can do this as many times as you need
Because they are magic flowers

And if you get good at looking and listening
With more than just your eyes and ears
You will find these creations everywhere
Left by someone
With far more magic
Than I will ever possess

You know when you find one because
Suddenly something ordinary
Becomes extraordinary
Suddenly you’ve been let in on a secret
About something you’d seen before
But never seen before

It can be anything from
A spray of mud on your pants
To a pair of decorated crutches
To a butterfly

It doesn’t have to be pretty on first sight
Many times it isn’t
Many times it seems horrible
Until that flash of inspiration
When it unfolds into a flower in full bloom

And then every texture is like suede
And every color is like the deepest blue before dawn
And every taste is like boiled collards with butter
And every smell is the fur behind a cat’s ears

I wish I had the magic necessary
To make these things myself
To fold reality into paper
And leave it everywhere for people to find

As it is, all I can say is
Someone has already done it

You can find these magic folded papers
On the inside of a zero
In the yawn of a kitten
In a feeding tube
In a wadded up rag
In a tangled old root
In a leaf that skips down the sidewalk

And all of them are flowers
And all of them are there to tell you
There is more in this world than you can ever see
There is more love
There is more light
There is more beauty

And you are part of it
Always
Even
(Especially!)
When everything seems to be
Crashing down around you

Can you accept
This magic spell
This gift
From the world
To me
To you?

Gastroparesis Awareness Month: A Day In The Life

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This is my second post for Gastroparesis Awareness Month.  Read my first post, Tube Love, here.  My first post was a love poem to my feeding tube.  :-)  My second one is a little more serious and a lot longer.  I apologize for the length.  I have trouble reading lengthy posts myself.  But sometimes I’m incapable of summarizing myself, so I have to write posts that are too long for even me to read.  I hope you’ll at least be able to skim through the important parts.  I’ve tried to break up the text with lots of photos, to see if that helps any.

A DAY IN THE LIFE

My day starts when my morning caregiver arrives.  I don’t just have gastroparesis.  I have a variety of physical, cognitive, and developmental disabilities that make it so that I need help to do a lot of things to get through my day.  So there are several times throughout the day when there is a caregiver here, the rest of the time there is one on call at short notice, and my day officially starts when the morning caregiver comes in the door.

My GJ feeding tube

My GJ feeding tube

The very first thing we do is start cleaning out my feeding tube.  Nobody taught us to do this.  This is something I learned how to do, in order to avoid having to keep getting it replaced due to clogs.  I push water directly into the j-tube, then I pull it out again, over and over.  Slowly, with the water come what we call “tube worms” — long wormy-looking pieces of food that have gotten stuck inside of the tube and would have caused a clog had we not got them out.  We know the tube is running smoothly when we can push water through it without a certain amount of resistance pushing back at us.  When we near that point, we stop and start concentrating on meds.

The first medication, and one of the most important ones that I take, is called Phenergan.  I call it my butt pill — the medical term is suppository, but I always forget that word, so butt pill it is.  They hand me the pill and a glove, and I turn around and stick it up my butt and wait for it to dissolve.

butt pill

Me holding a “butt pill” — a Phenergan suppository — in a gloved hand.

Phenergan is one of six nausea medications I take to get through the day.  Different people’s gastroparesis symptoms are different.  Some people’s main symptom is pain and bloating.  Mine is nausea, really bad nausea.  So I am on no less than six nausea meds.   The most important ones are Phenergan, Reglan, and Marinol.  I also take Zofran, Benadryl, and Lorazepam for nausea.

Reglan works by making my digestive system move faster.  The core trait of gastroparesis is that your stomach is partially paralyzed and moves too slow, failing to empty food into your intestines fast enough.  Reglan is one of the few treatments that targets that slowness directly.  Unfortunately I have intolerable side-effects at a full dose of Reglan, so I have to take a half-dose.  I am hoping one day to be able to switch to domperidone, which I would have to order from outside the country.  Domperidone is like Reglan, but it does not cross the blood-brain barrier so it has fewer side-effects.  Not being FDA-approved, however, is a major obstacle to people with gastroparesis in the USA.  It is approved in most other countries, though, so it’s possible to order it, according to my doctors anyway.

Marinol is derived from marijuana.  I was highly skeptical of it at first because of that.  But at the time they suggested it, I was on all five of my other nausea meds and still not able to come home from the hospital.  Marinol often works where all other nausea meds have failed.  It does not generally get you high, although it can have other unpleasant side-effects like anxiety and paranoia.  I luckily have had few side-effects, no high, just a huge reduction in nausea.

Zofran is a nausea medication often given to people on chemotherapy.  I don’t understand what the big deal is supposed to be, though.  Unless I combine it with Benadryl or Lorazepam, it really doesn’t do a lot for me on its own.  And I’ve heard the same from a lot of other people with gastroparesis.  Zofran is a pill that dissolves under my tongue, so I don’t have to swallow it or put it through the tube.  That’s the one benefit is it’s fast-acting and easy to ingest.

Benadryl and Lorazepam are more well known as an allergy medication and an anxiety medication.  However, Benadryl is closely related to Dramamine, a well-known nausea med, and has anti-nausea effects itself.  Lorazepam, likewise, has anti-nausea effects.  These are medications I take for multiple reasons, both the nausea side and the allergy and anxiety side.  I take a fixed dose, but I also can take them PRN, meaning whenever I have extra nausea and need more medication than I would normally take.  Which happens most days.

My caregiver removes the drainage bag from my g-tube.  Overnight, I always wear a drainage bag that drains the contents of my stomach into a bag.  Before I did this, I my bile used to build up in my stomach because it wasn’t getting passed along down to my intestines.  Then it would creep up my esophagus, into my throat, and I’d wake up choking on it.  I’d cough it out for over an hour sometimes, sometimes having to call an ambulance if I had enough trouble breathing.  I have bronchiectasis, a form of COPD that basically ensures any time I aspirate enough stomach fluid, I’m going to get aspiration pneumonia or at least some other lung infection.  So this was a big deal, and it was happening several nights a week.  With the drainage bags, and other drainage practices, I only get aspiration pneumonia a few times a year.  Which is still too much, but it’s a drastic cutback and gives my odds of surviving into old age a much-needed edge.

After we’ve removed my tube feeding pump and cleaned out my tube, we mix up my medications.  Most of my medications are in liquid form, the best form for a j-tube because j-tubes are easily clogged.  We use a syringe to put the medications in.  The j-tube has two syringe ports, one for a small syringe and one for a larger one. You hold closed whichever one you’re not using, or you can get sprayed in the face.

Inserting medication into my j-tube

Inserting medication into the small port on my j-tube.

After meds, put Diet Coke into both of the tubes and let it soak for ten minutes or so.  This helps dissolve any clogs.  Hot water is supposed to be as good as coke, so we flush it with hot water afterwards.

Then we do something that polite people call ‘venting’, but the nurse that taught me calls it ‘burping’ and the idea fits.  You open up the g-tube over a cup.  We have a designated green Burp Cup.  I recommend yellow or green cups to camouflage the color of the bile a bit.  What nurses teach you to do, is put the cup under the tube, unclamp the tube, and unscrew the cap.  What’s supposed to happen then is all your stomach fluids flow out of the tube and into the cup.  But it’s not that simple.

burp cup

My burp cup with some liquid in it, and a syringe in front of it.

Here are some of the things I have to do in order to properly burp enough air and fluid for it to actually empty properly and prevent aspiration.  Some of these things could damage the wrong kind of tube.  So don’t just do something because I wrote about it here.  But here are the kind of things I do during a burp:

  • I move the tube in and out.  Pulling it out as far as possible, holding it to see if more fluid or air comes out, then pushing it back in.  Sometimes I move it almost in a pumping motion, sometimes much slower.  I have to be careful, as I do this, not to pull so hard or so far as to actually dislodge the tube.  Every tube is different, and some dislodge more than others.  You have to know your tube well to do this.
  • I press on my stomach in different areas, which helps move the bile and air around.
  • I swallow a lot of air, which forces the bile out of the tube through air pressure.
  • I use my stomach muscles to push.  Almost like you push when you’re on the toilet, except it’s your stomach, not your bowels.
  • If there is any solid matter that seems to be getting in the way, such as blood clots (I have an intermittent bleed in my stomach), I stick a bent paperclip inside the g-tube.  I keep one end bent so that it will never get stuck inside the tube.  And I use it to either hold solid matter out of the way so the liquid can get out, or to crush up or move the solid matter around to help it come out.
  • I use a syringe to either push water into the tube, or pull bile out of the tube.  This can help when things are stuck.  It can also help to dilute things when the stuff in your stomach is too thick.
  • Speaking of diluting things, sometimes I drink a bit of water or ginger ale and then jump up and down to mix it up with my stomach fluids.
  • I chew gum.  This seems to stimulate both bile production and gas production, and sometimes this helps move things through or get things thinned out.

Understand that some of these are things that no doctor would ever recommend you do to your tube.  And since each tube is different, what I’m doing above might destroy another type of tube.  So my advice if you have a tube, is get to know your tube really well before you do anything unusual to it, and get to know your body, too.  Some of the things I do could also make a person really sick in the wrong circumstances.  In fact it sometimes makes me sick, if for instance I swallow a lot of air but I can’t get it to come out the tube.

Then we dump the contents of the Burp Cup in the toilet (which is every bit as gross-looking as it sounds), rinse it out a few times and keep dumping that in the toilet, and then fill it up with soapy water and set it on the back of the toilet to soak.  Without the soapy water, it starts to really reek after awhile.

Soon enough it’s time for more medications.  Those work the same way the original ones worked:  They go in through the j-tube.  And this is also where my tube feeding starts.

I’m fed a formula called Osmolite.  It’s basically a pre-mixed formula, it’s the same every day.  It’s beige and it smells and tastes gross, but luckily I don’t have to smell and taste it.  It looks exactly like what we used to feed the baby birds at the wildlife rehab center I used to work at.  Anyway, a j-tube is different from a g-tube in some important ways when it comes to feeding.

Osmolite

A bottle of Osmolite hanging inside of its backpack.

A g-tube goes to your stomach.  Your stomach is designed to take in large quantities of food at once.  That means that your stomach is capable of stretching to accommodate your food.  People who are fed by g-tube can often be fed simply by pushing lots of food in by syringe, all at once.

But a j-tube goes to your intestines.  Your intestines are not able to stretch to accommodate the food you need to eat.  So you need to be fed extremely slowly.  For me, this means I’m on a feeding pump.  It gives me 45 milliliters of food per hour.  Ideally, I would get 90 mL per hour, but that made me really sick, so I use 45.  This means that it takes 24 hours to feed me the whole container of food.  So I have a backpack the feeding pump and the Osmolite live in, so if I have to go anywhere, I can just wear it on my back.

The feeding pump itself is just a little box that attaches to a tube going out from the Osmolite bottle.  The pump slowly moves the food into my intestines, keeping it at a constant rate day in and day out.  I sometimes give myself a few hours of break in the morning, but other than that I am constantly eating, and feel neither full nor empty.

feeding pump

An Enteralite Infinity feeding pump, inside its backpack.

The only time I’ve felt hunger has been since going on steroids for severe adrenal insufficiency.  Steroids can cause such intense food cravings that I end up eating small things and having to drain them out of my g-tube to avoid aspirating them.  I’ve talked to my doctors and they say I’m not to blame for this, because it’s a known side-effect of dexamethasone.  I just have to be careful.

The feeding tube has to be set up properly.  The tube is connected to the Osmolite bottle, wound through the backpack and into the pump, then wound out through another hole in the side of the backpack.  Then it’s plugged into my j-tube.  The settings have to be cleared so the pump knows it’s a new bottle, and not the same old one.  If it thinks it’s the old bottle, it will stop feeding me early.  Then we have to make sure it’s still set to the right feeding speed.  Then we “prime” it by pressing a button to move the food through the tube quickly.  And then we plug the tube into my j-tube and turn it on.

Putting the Osmolite tube into the large port of my feeding tube.

Putting the tube from the Osmolite bottle into the large port on my j-tube.

the osmolite tube connected to my feeding tube

The Osmolite tube connected to my feeding tube.

If anything goes wrong with the feeding, there are a bunch of different, loud alarms that will go off.  There’s two separate alarms for problems with food flow, one for trouble with food flowing into the pump, one for trouble with food flowing out of it.  There’s another alarm for if it runs out of food, and another alarm for when the feeding is supposed to stop.  And an alarm for if you plugged it in but forgot to turn the pump on.  The main thing they have in common is that they are very loud, annoying, and impossible to ignore.

After my feeding is set up, the next big part of my routine is another butt pill.  I have an alarm clock set for that.  The alarm clock is out of my reach, so in order to get to it I have to move out of my bed.  This is enough of a prompt that usually I can go get the butt pill and insert it into my rectum with no problem.  My problem is with initiating actions, and the alarm clock placed out of my reach helps me initiate.

butt pill

Standing in the kitchen holding up a butt pill (Phenergan suppository) in its wrapper.

At some point, a different time each day, a licensed nursing assistant (LNA) comes in to help me bathe.  The first thing she does is clean the mucus, and sometimes blood, off of my stoma site (the area where my feeding tube enters my body).  And then we decide how much else of me to wash.  Washing is very painful for me, so I often opt to only wash the most essential parts and put medicated lotions on, and deodorant.  I need help washing because of a movement disorder, although even as a child I was never good at bathing and I went through a lot of pointless and humiliating training about bathing in mental institutions as a teenager.

I don’t have daily mealtimes, because I am eating literally all day and all night.  The closest I have is a series of medication routines, and there are people here who help me perform those.  They involve mixing up medications and putting them into my j-tube in a certain order.  That kind of thing is too complicated for me to do on my own.  I can do maybe one medication, if I’m lucky, but I can’t do the huge number of meds that are required for my daily routine.

The people who come to help me out basically do nearly everything for me.  They either help me do the thing entirely, or they help me get started.  For instance, there are many things that I can’t do on my own, but that I could do if you handed me the materials to do it with.  Like I would not be able to go into the bathroom and pick up deodorant and put it on, but if you hand me the deodorant I can put it on.  This is because of problems initiating associated with my movement disorder.  So I get anything from assistance with starting things, to total assistance, and it all depends on what I need that day.

I wear a drainage bag on my g-tube during afternoons and evenings.  It collects everything from inside my stomach.  It has an accordion that you press down, and as the accordion pulls itself out again, it pulls the liquid and gas out of my stomach.  As long as I keep pressing the accordion as it comes out, it will keep sucking in bile.  Then when someone gets here, they can dump all the bile in the toilet and wash out the drainage bag with vinegar and water.  I have devised a number of ways to keep the drainage bag in good shape so that I can use it over and over again for months at best, even though they are single use only.  They cost $80 and aren’t covered by insurance, so we have to be creative.

Drainage bag connected to my g-tube, contents pretty full.

Drainage bag connected to my g-tube, contents pretty full.

The evening routine is much like the morning routine, including burping the g-tube manually, and a lot of medications at different times.  There’s also a bunch of things, like physical therapy, that don’t have much to do with the gastroparesis or feeding tube at all.  I’ve needed services to survive for longer than I’ve had gastroparesis, and I’d still need them even if I didn’t have gastroparesis.  It’s just that right now, a good deal of my daily routine does revolve around gastroparesis.

Night is the scariest time for me with gastroparesis.  This is the time when I am most likely to aspirate.  What happens is usually that something goes wrong with the drainage bag, and it isn’t draining as much as it should.  This usually means a blood clot or something is stuck in the tube, preventing bile from exiting my stomach.  So the bile goes up into my esophagus.  I have central and obstructive sleep apnea and sleep with a bipap machine that blows air into my lungs.  When the bile goes into my esophagus, the bipap blows it down into my lungs.  I wake up choking and coughing.

Me wearing my bipap mask at night.

Me wearing my bipap mask at night.

Then, I usually spend at least an hour coughing up bile.  If it’s bad enough that I can’t breathe, I have to call 911.  But often I just sit on the bathroom floor with a wad of tissues and cough up bile and throw them away as fast as humanly possible, trying to get it all out of my lungs.  I have a condition called bronchiectasis that makes it easy for me to get lung infections and hard for me to clear lung infections.  So every time I have a bad enough aspiration, I have to go on antibiotics immediately.  The goal is to prevent aspiration pneumonia, although usually I get aspiration pneumonia anyway and the antibiotics just help me fight it off in the end.  Right now, as I’m writing this, I have aspiration pneumonia for the second time in the past year.  But I’m doing better than ever because I’m able to treat it properly now.

But the good news is that with the feeding tube, I’ve gone from aspirating several nights a week, to aspirating several nights a year.  Any aspiration is too much aspiration, but with the feeding tube I have the chance to live a lot longer than I was going to live without it.

The very last thing that happens in my day is a very early-morning phone call and alarm clock.  It’s the Phenergan suppository again.  That Phenergan suppository is the bedrock of my anti-nausea regime, and it’s vital that I get every single dose.  The Phenergan, Reglan, and Marinol are the most important nausea meds and I never skip a dose, ever.  It gets to the point that I look forward to sticking that Phenergan pill up my butt because I know how much better I’ll feel afterwards.  And as someone who doesn’t like anything put up any orifice where it doesn’t belong, that says a lot.

ABOUT GASTROPARESIS

Gastroparesis is a really weird disease in some ways.  One of the weirdest parts of it, is that the severity of your symptoms has no correlation to the severity of your delayed stomach emptying.  So someone can have a severe stomach emptying delay but barely any symptoms.  Someone else can have a mild stomach emptying delay but very severe symptoms.  I’m someone who has (as far as we could determine) a mild to moderate stomach emptying delay, but severe enough symptoms that I require a feeding tube both for the nutrition and to avoid aspiration.

Also, different people have different symptoms.  Here is a description of gastroparesis taken from one of the common gastroparesis awareness ribbons:

Paralysis of the stomach that is estimated to affect 5 million Americans with no cure and few treatments.  Foods eaten take hours or even days to leave the stomach leading to nausea, pain, vomiting, malnutrition, bloating, weight issues, and more.  It does not mean that you are not hungry… it means that you are starving but cannot eat the food right in front of you.

Another awareness ribbon reads:

Gastroparesis is a rare, debilitating disease that literally means paralysis of the stomach.  When someone with Gastroparesis eats, the food stays in their stomach for hours or even days.  Symptoms of Gastroparesis include = Severe abdominal pain, gastro reflux, vomiting, nausea, feeling full after eating very little, bloating, heartburn, unintentional weight gain, unintentional weight loss, malnutrition and much more.  There is currently very few treatments and no known cure for Gastroparesis.

But even within those lists of symptoms, different people experience different things.  Some people lose a lot of weight.  I lost a total of 70 pounds overall.  Other people gain a lot of weight, or lose weight and then gain it back again as their body enters starvation mode and tries to hang onto what calories it can.  Some people’s main symptom is pain and bloating.  My main symptom is nausea and loss of appetite.  I had such severe nausea that even before I got the feeding tube, I couldn’t make myself drink enough Ensure to survive, until they put me on six different nausea medications.

MY VIEW FROM THE SUPPORT GROUPS

Something I see very often in the online support groups, is people getting substandard care for gastroparesis.  Their doctors don’t understand gastroparesis, so they don’t understand how to treat it.

One of the biggest mistakes doctors make is to assume that the person’s symptoms will only be as bad as the delay in stomach emptying.  As I mentioned earlier, severity of symptoms is, for reasons not entirely understood, not well-correlated with the delay in stomach emptying.  It may be that there are other things, like problems with the vagus nerve, that cause the more severe symptoms some people report even when their stomach is emptying relatively fast for a person with gastroparesis.

But at any rate, I see way too many people struggling to keep enough food down to maintain a healthy weight, but being told by doctors that everything is okay because their emptying delay is not very severe.

I also see a lot of people whose doctors give up on nausea medication before they even start.  Just to give you a clue, this is what my nausea medication looks like.

Every day, I take six different nausea medications.  I take Reglan (which is not just a nausea medication, but also speeds up your stomach), I take Zofran, I take Phenergan suppositories, I take Marinol, I take Benadryl, and I take Ativan.  You may not know that Benadryl and Ativan treat nausea, but they do.  And it is the combination of those medications that got me out of a five-week-long hospital stay a couple years ago.  Marinol was the final addition.  I had been afraid to take it because it’s derived from marijuana, but it doesn’t get me high and I have no real side-effects from it.  Marinol often helps people with nausea who can’t be helped by any other medication, and I fell into that category.  I was already on five medications, which were helping somewhat, but only the addition of Marinol allowed me to leave the hospital without a feeding tube, and stay home without a feeding tube for several months.

Six different nausea medications of various types

All of my nausea meds: Dronabinol (Marinol), Q-Dryl (Benadryl), Metoclopramide (Reglan), Lorazepam (Ativan), Phenadoz (Phenergan), and Ondansetron (Zofran).

What I see happening to other people, though?  Their doctor offers them a little Zofran or Reglan, maybe both if they’re lucky.  Then, if they don’t improve sufficiently, they’re told they are out of luck, and there’s nothing more the doctor can do.  I understand the risks of prescribing six different medications that are all sedating in their own ways.  But it’s also a huge risk to allow your patient to starve to death because they can’t keep food down.  Many times these are people who won’t need feeding tubes, people who won’t need any drastic interventions, all they need is something to keep the nausea under control.  And their doctors won’t experiment with combinations of drugs for that.  They just give up after the first one or two fail.

I also see a lot of people whose doctors simply don’t know much about gastroparesis and won’t do much to find out about it.  So they won’t get referred for the best treatments, or they’ll get referred to a specialist who also doesn’t know much about gastroparesis.  And they’ll get passed around in circles by doctors who don’t know what to do with them, getting sicker and sicker along the way.

People who have multiple health conditions tend to have the most trouble getting good healthcare, and gastroparesis is often the results of another health condition.  Diabetes is a common cause of gastroparesis.  Some eating disorders can result in gastroparesis.  In my case, we suspect it’s caused by an autonomic neuropathy that runs in my family.  But we don’t know.  When I was diagnosed with severe secondary adrenal insufficiency, we had a lot of hope that the gastroparesis symptoms would go away, because adrenal insufficiency can mimic gastroparesis.  But the symptoms didn’t go away.  I gained a little weight back on steroids, but that’s all.  Now we’ve found out through single-fiber EMG testing that my mother and I have a neuromuscular junction disease, probably something like myasthenia gravis.  We also have some form of hypermobility syndrome, which can sometimes be tied to a connective tissue disorder, which sometimes can be tied to gastroparesis.

And I’ve noticed among the support groups that most people with gastroparesis are like me:  They have a complicated medical history with a good deal of diagnoses that are connected in ways that aren’t fully understood.  There’s people with mitochondrial disease, there’s people with Ehlers Danlos and related syndromes, there’s people with eating disorders, there’s people with adrenal insufficiency, there’s people with diabetes, there’s people with neuromuscular junction diseases, there’s people with autonomic dysfunction, and there’s even people with several of these things at once.  And the more things we have, the less our doctors seem to understand what’s going on.  I’m lucky to have a dedicated team of specialists for all of my conditions, who are willing to work together to keep me alive.  Without them I wouldn’t be here right now.

There have always been some doctors who felt like my life wasn’t worth saving, or that things weren’t as bad as they actually were.  The doctors I’ve kept are the ones who have done the lung x-rays and CAT scans to prove I had pneumonia and bronchiectasis, the ones who did the gastric emptying studies to prove I had gastroparesis, the ones who did the blood tests to prove I had adrenal insufficiency, the ones who did the EMG to prove I had a myasthenia-like syndrome.  Basically, the ones who have gone out and gotten the proof to fight anyone who says either “This kind of patient isn’t worth keeping alive,” or “She’s exaggerating her symptoms, it can’t be that bad,” or “She’ll never be able to take care of a feeding tube anyway.”

WHY AWARENESS?

I’m not usually a big fan of awareness days, awareness months, and that kind of thing.  But there are things I make an exception for, and gastroparesis is one of them.

I went for years with gastroparesis symptoms before I was properly diagnosed and treated.  In fact, the first time I was hospitalized for gastroparesis, was something like five years before I was diagnosed.  They put me on medications for “chronic nausea” and didn’t do any further looking for the source of the nausea.

If I had been diagnosed and treated earlier, there’s a chance that it would never have gotten as bad as it is now.  There’s a chance that I wouldn’t need a feeding tube, that I wouldn’t have gotten aspiration pneumonia eight times in one year, that I wouldn’t have entered adrenal crisis from the illnesses that followed that.

Because for someone with a complex medical history, one thing is never just one thing.  Gastroparesis causes me to have bad reflux.  The treatments I use for sleep apnea cause me to aspirate that reflux at a higher rate than normal.  Bronchiectasis causes that aspiration to result in pneumonia pretty much every time.  Adrenal insufficiency means that getting sick with pneumonia puts me into adrenal crisis without treatment.  Everything builds on each other until it’s actually pretty surprising that I’m alive at this point.

Gastroparesis can be pretty bad even if you don’t have a complicated medical history.  But as I said above, most people I know with gastroparesis do have a complicated medical history.  Whether it’s eating disorders, diabetes, mitochondrial dysfunction, adrenal insufficiency, Ehlers Danlos, autonomic dysfunction, or some unholy union of many of these things, people with gastroparesis rarely seem to come with just one disease.  And that makes it even more important that people know what gastroparesis is, and what it looks like, so they can do something about it.

By the time I was diagnosed, I had been living on grits, crackers, and broth for weeks and had lost forty pounds.  They didn’t believe me about how little I was eating until they saw me fail to eat anything at all for weeks in the hospital.  In their eyes, a fat person must be eating, even if that fat person was losing catastrophic amounts of weight.  It’s even worse for people with gastroparesis who experience weight gain as part of the symptoms, because anyone who has eating problems and is gaining weight has less likelihood of being believed by doctors, even though medicine knows perfectly well why this happens.

There were a few things that should have been big red flags for me, but I simply didn’t know enough to understand their significance.

One of them was that when I threw up, I would often throw up food from a long time ago.  Like from up to three days ago.  I just kind of assumed that the food was coming from somewhere really far down my digestive tract, but it was actually sitting in my stomach all that time.

Another one was that I always felt better if I didn’t eat, or barely ate, for days at a time.  There were times when I’d live on small amounts of broth, oatmeal, and grits for weeks or months at a time, and I always felt much healthier afterwards.  Most people don’t feel healthier after barely eating anything for a long time.

The constant nausea should have been a red flag, too.  But I was so used to weird symptoms that I honestly didn’t even think to classify that as especially weird.

Also, I had motility problems in other areas of my gut.  Ever since childhood, I had bad constipation, sometimes to the point of bowel impaction and blockages requiring emergency room trips and hospitalizations.  As an adult, they found that my esophagus had reduced motility as well, that it didn’t move food as fast as it should.  So my bowels move slowly, my esophagus moves slowly, it shouldn’t be a surprise that my stomach moves slowly as well.  But for some reason they never looked at that until that five-week hospitalization.

And what happened during that five-week hospitalization?  I’d aspirated again and gotten pneumonia.  I was very weak from not eating, from myasthenia-related reactions to vomiting, and from an impending adrenal crisis.  And I demanded that they keep me in the hospital until they figure out why I couldn’t eat, and figured out a way for me to get adequate nutrition again.

They got serious about it then.  They diagnosed the gastroparesis, although they wouldn’t do the final testing for another couple months.  They started me on that intense nausea medication regime.  They tried a bunch of antibiotics that are supposed to speed up your gut, but they just made me more nauseated.  And they started seriously considering a feeding tube.  Marinol is the only reason I didn’t get a feeding tube right then and there, from what I’m told.

At any rate, if you want to know more about gastroparesis, I’d urge you to visit the G-PACT (Gastroparesis Patient Association for Cures and Treatments) website, which deals with gastroparesis and related motility disorders and digestive tract paralysis.  If this sounds like you or anyone you know, please get help, because the longer you go without treatment, the less they can do in the end.  There aren’t a lot of treatments for gastroparesis, and the more extreme the gastroparesis, the more extreme and invasive the treatment is.  So you want to know if you have it, as early as possible.  The treatment I have — a feeding tube — is actually middle-of-the-road for gastroparesis treatments.  It’s invasive, but it can be removed, and you can still eat if you have one.  The most invasive treatments involve things like a stomach pacemaker, or removing your stomach entirely.  So you don’t want it to get that bad before you get treatment.

And it’s one of those diseases nobody seems to have heard about.  Which is one reason that I think awareness is important.  I know that the disability rights movement has a million different critiques of awareness, including the idea that it pits different diseases against each other.  But if I had simply known a few years before, what I learned when I was diagnosed, I could have been spared a lot.  I’m lucky to be alive, given the combination of diseases I have, and I’m far from the only person with gastroparesis whose health is fragile like that.  So I think it’s more important to get the word out than to do what the disability rights movement tells me to do about awareness months.  For things like this, awareness months are really important, because we haven’t got any other way of spreading the word to people who need to hear it.  If any of what I’ve written here, or in my last post, helps even one person, that will be enough.

Tube Love

Standard
Drawing of a GJ feeding tube.

Drawing of a gastrojejunostomy feeding tube, GJ tube for short.

Tube Love

Its name in medical-ese is a gastrojejunostomy tube
Or a GJ tube for short
I just call it The Tube

Through nothing more than some tubes
And a syringe
And a feeding pump
I give myself water
I give myself food
I give myself meds
I give myself life
Bypassing my paralyzed stomach

I drain out the life-destroying bile
That would otherwise suffocate me
In pneumonia after pneumonia
Until I eventually got unlucky and died

There are no words for the feeling
Of giving myself a big syringe of cold water
On a hot day
And feeling every inch of it go
Cold
Into my intestines
No stomach to hold it back
No stomach to vomit it up

Maybe the word is love?
My tube is not an inhuman machine
It is a part of me

If love means that you take care of someone
If love means that you save someone’s life
Without thought for your own
If love means that day by day, you do the hard work
Without complaining or tiring
Even when you get clogged up and miserable
Then surely my tube loves me

And I love my tube
It has a personality
It’s grumpy on some days
And happy on others
I try to make it happy

I know more about making a feeding tube happy
Than any of those doctors and nurses
From Gastroenterology
From Interventional Radiology
From Pulmonology

They said I had the mind of a child
That I would pull my tube out trying to play with it
The way young babies do with their feeding tubes
They said I didn’t have the cognitive capacity
To take care of a feeding tube
They said I would fail
They said I would be better off dying
Than even trying the feeding tube
And above all, they said I wouldn’t know
How to take care of it
That it would be a huge burden
That maybe, I belonged in a nursing home
Where they knew how to take care of things like that
And people like me

I just got out of the hospital
The nurses were amazing people
But they nearly ruined my feeding tube
They didn’t know how to make it happy
I’ve been to Interventional Radiology enough
To know that they don’t know the slightest thing
About making a feeding tube happy
Not even the doctors who predicted my doom
Know how to make a feeding tube happy

But I know how to make a feeding tube happy
I have been learning for a year now
Every day, I learn more
Every day, I learn that
If you treat something as if it is alive
And you treat it with respect
Then it will be happier
And it will work better
And it will like you in return
Maybe even love you
And it will give you
Everything it has to give

I love my feeding tube
And my feeding tube loves me
My feeding tube takes care of me
It keeps me alive
It works hard all day long
To keep food and meds and water moving smoothly
And I work hard all day long
To make sure it has the resources to do it with

My feeding tube and me are friends
My feeding tube and me are a team
My feeding tube and me like each other
My feeding tube and me love each other

We have a relationship
My feeding tube and me
We are connected intimately
It is not just a piece of plastic
It is a life-saver
It brought me back from certain death
How can I fail to love it?
And how can I fail to interpret its efforts on my behalf
As its own kind of plastic cyborg love?

I love my feeding tube
I will always love my feeding tube
I don’t care how it sounds
I don’t care if anyone understands
You can’t go through some things with someone
Without finding love there
And with its fate intertwined with mine
Its plastic intertwined with my stomach and intestines
Love is what we’ve found,
Me and my feeding tube
And I will always find ways
To make it happy

Art and poem by Mel Baggs, art 2013, poem 2014.  This is my contribution to Gastroparesis Awareness Month.  To learn more about Gastroparesis and related forms of Digestive Tract Paralysis, go to the G-PACT Website.

I also wrote a longer and more serious post about my life with gastroparesis, which you can read here at Gastroparesis Awareness Month: A Day In The Life.