Almost Alike: A Medical Cautionary Tale

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.

Gastroparesis Awareness Month: A Day In The Life

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

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.

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 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.

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.

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.

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

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.

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.

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.

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.

Don’t ask, I can’t tell, I can’t even explain.

[Originally written on October 17, 2012, after a hospitalization for pneumonia and gastroparesis, in which I experienced severe delirium for five weeks. This was my first attempt to explain what I was going through. It was the basis for part of the story in my comic.]

She skated towards me wearing a red winter scarf. My feet were frozen to the ground. She waved her scarf in the air from a distance. It was the only thing with color in sight. Then it flew through the air and landed in my hands.

I clutched the scarf tight. I didn’t see but felt her fall. I didn’t see but felt life struggle to maintain itself, and fail. I didn’t understand. I never understood. I couldn’t make sense of anything anymore.

I never let go of the scarf. I unzipped myself and wrapped it around my heart. To keep everything warm when nothing was certain. And then I cried until I thought I would never stop.

And I’ve tried to hide what is gone. But I’m not sure if it fools anyone. There are places we used to go, things I used to do, and they seem as dead as she is. Only sometimes I feel something squeeze my heart. And things pop into focus once again, in color.

I can’t tell you all of my wishes, because they are all in code. I can’t tell you what I can’t do anymore. It’s just one more room in the building, left blank and unexplored. I wish I was known for who I was and not for what I did. I can’t tell you what I’ve lost or what I’ve gained.

I can still see more than people want for me to see. I can still feel things deeper than people expect. What I can’t understand, I still can’t understand, only more. I still want things that can’t be named. I still can’t tell you any other way than this here, right now. What stays, what shifts, what’s changed.

If you wanted something different, I can’t help it. This is what you get. If you don’t understand, maybe it’s not here for understanding. I’m just exhausted, and didn’t have the energy to tell you the normal way. So I took what I had and I went where I could. And this is what you get.

Don’t tell me what I should have said. Chances are, I couldn’t. This is brain damage we’re talking about. It isn’t convenient. It doesn’t instantly vanish. If I could only tell you a tenth of it.

It’s hard to look around and see that nearly everything I used to pay attention to, is impossible to understand. It’s hard to know I can’t say anything unless it follows a particular pattern, like this does. I couldn’t say this part without all the rest before it. All the rest. Not something else. Something acceptable.

I’m scared and I couldn’t tell you why. It’s winter and the wind is blowing hair in my face. I’m glad I have the scarf around my heart. Otherwise I’d get lost in all the snow. Everything used to be familiar. Now there’s so much snow I can’t identify anything. Or not much of anything.

Please, something be familiar. Something be unfrozen. Something be other than white. I feel tiny, and I’m shaking, and I don’t remember anything. Not what I just said, not that you’re alive. In here, I don’t know you. I don’t know me. I don’t know anything.

But it always fades back. And there’s always more. And I always find myself writing this. To you. To who? To me. To they. I don’t know. All I know is I couldn’t have written this any other way. And maybe someone can even figure out what I meant. Because it’s in there. If you look in the right places, and with the right eye for the reality of one experience or another.

I am through, so I hope, sitting up all night with neon pink insects eating my eyelashes. Lying in a sunlit room with parts of me flying into the sky and back again. Night after night trying to avoid being flattened into a grid pattern and dissolved. In lots of pain. With lots of nausea. And I hope never to visit that realm again. A lioness carried me out.

Not that anyone noticed. They come in and change your IV bag and the hours between are left for you to lie still and drift into bizarre hallucinatory worlds that always have an undercurrent of hell on earth to them. They don’t check you for it. That’d take time. So of course they’re blindsided by my paranoia and then, after that was gone, sliding into the blank white snow everywhere. They only noticed what affected them.

I’m out. But it’s not over. And I wish I could tell you the things I can’t say or understand. But they’re just lost. And I get scared if they’re ever coming back. And this was the only way to tell you. So don’t ask it to be less roundabout or full of things that didn’t literally happen. Because right now that’s one thing I can’t do, can’t do at all. Don’t call this creative writing it’s the only damn writing I have at all this moment. And what I’ve done hurts like blinding colors in my eyes instead of a scarf warming my heart. If she’s dead or asleep, I can’t tell you, don’t know, but it hurts.

The Scarf — A Comic About Delirium

This is not a BADD post.  It’s just a post I’m making for people who might have wondered.  And people who didn’t wonder, but might want to know.  And people who might have experienced something like this, and might be feeling really, really isolated.

In the fall of 2012, I was hospitalized for roughly five weeks with aspiration pneumonia related to gastroparesis and bronchiectasis, and I now know that undiagnosed adrenal insufficiency played a huge part in why I got much sicker than anyone thought I should be.  (My doctor now thinks I probably should’ve been in the ICU during the first part of that stay.  At the time, the first of several hospitalists took the position that he was only going to treat my pneumonia and was going to ignore all of my other conditions.  It was hell on earth and there were times I only existed by the skin of my teeth.)

It was a grueling and traumatic experience.  Especially things related to the severe delirium I dealt with both in the hospital and after I returned home.  And the aftermath of that delirium, which took over a year to fully dig my way out of.

The worse your cognitive impairment after a period of delirium, the more likely you’ll die later on.  So delirium isn’t just this weird thing that causes disorientation, cognitive impairment, and sometimes hallucinations.  It’s also something that can kill you.  It’s a form of brain damage, as far as they know, and each delirium makes you more vulnerable to further delirium.  But exercising your brain can help.

So I started taking classes online, to try to keep my brain occupied.  One of the classes was a class on comic books.  The big assignment for the class was to make a mini-comic.  I’m not good at that kind of drawing, and I’ve never been able to finish anything like this before.  But to my surprise, this comic pretty much poured out of me.

I want to make one thing clear though, before anyone reads it:  This is not the literal narrative of what happened to me.  It combines elements of things I experienced in a literal way, elements of things I experienced in the delirium, elements of a story I wrote later on in order to try to deal with the feelings the delirium and hospitalization caused in me, elements that are pure metaphor, and elements that are put there to make the story flow easily.  This comic is about emotional truth, not literal truth.  For instance, I didn’t just “wake up from the delirium and squeeze someone’s hand” (although there was a period of time when holding someone’s hand was quite important) — that’s just a shorthand for a much more complicated process than I could do in seven pages of comics.  The tube feeding came months after the first hospitalization, not immediately.  And obviously the person I drew looks nothing like me.  Some of the story follows a stereotypical story pattern for certain things, specifically so that I could explore others without having to flesh out every detail that varied from a stereotype.

The PDF of the comic is available at the following link:

https://dl.dropboxusercontent.com/u/92647909/TheScarf.pdf

Here’s a picture of the front page:

There’s two things that I hope about this comic:

1.  That it can express something of what I went through.  Because it was one of the most profoundly isolating and lonely experiences of my entire life.  It seriously felt like going into the underworld or something, and after I came back I felt like that world was all over me and I couldn’t break through to the world that everyone else was in.  And nobody could talk to me about it, and nobody could offer any advice, and I felt like I still had a foot in that other-world for over a year.  And like nobody could really see me, because I was in that other-world, and I couldn’t see anyone else, because I wasn’t in their world, and it was very frightening and isolating and I most of the time had no words to articulate any of it.  Except occasional bursts of almost-poetry.  But it felt like whenever I said anything, people just stayed silent, they didn’t know what to say or how to respond, and that made me feel even more distant and frozen and dead.  Also whenever I was hospitalized or sick I’d fall back into delirium even more easily and that didn’t help either.  Writing this comic was the first way I felt I could express any of that feeling in a big way.

2.  Even more so, I hope that if anyone else has gone through anything like this, that it speaks to them in some way.  That’s the other reason I’m posting it here.  My friend urged me to make it public for the sake of people who might be feeling the same isolation.

Also, that holiday season, my mother bought me a red scarf and pinned a note to it saying “to wrap around your heart”.  It means everything to me.  I still have it, and I especially wear it when I’m feeling like I’m being dragged too close to the delirium-underworld again.  Which happens, but less and less often, especially since treating the adrenal insufficiency.

I hope this is meaningful to someone besides me.

I’m starting to heal here.

The hospitalization started awful but got better after the Internet convinced the hospital that lots of people care what happens to me. Since not everyone has that resource, my goal once I get better is to work hard on a non discrimination policy that will prevent any other patient from going through what I went through.

I don't have the energy to go through the whole story again. But basically my gastroparesis was getting so severe that I could no longer keep up a minimal Iiquid diet and was also aspirating frequently as the gastroparesis got more severe (due to gas bubbles from food sitting forever in my stomach), leading to getting pneumonia so often that it was clear my life was in danger. And I was dropping weight in ways that nobody should ever drop weight, fat or thin. So I needed a feeding tube, the ER docs suggested a feeding tube before I even said I needed one, everyone actually on my case knew I needed a feeding tube… and I spent a weekend being pressured, by strangers who were not specialists in any of my conditions, subtly and not so subtly to accept death instead of a feeding tube.

The above picture shows I got the feeding tube, and am using it just fine for food and medication. Not without a whole lot of unnecessary pain and difficulty. Fortunately I have outside witnesses to nearly every single thing that occurred in this place. I can't go into it all because it's too fresh in my memory but someday I'll write more. I just wanted to let people know I'm still here, no thanks to some assholes I met along the way. But there have also been a lot of really great people, especially nurses, working here. And the longer I've been here the less crap I've gotten from people. Especially as they see the feeding tube working wonders in all sorts of ways.

(For anyone curious this is a GJ (gastrojejunostomy) tube, with entries into my jejunum and stomach. It allows me to completely bypass my stomach for nutrition and medications, and to drain gas and fluid from my stomach to help prevent aspiration. I'm already gaining back the weight I lost, I'm far less nauseated than I've been in years, and eating is incredibly easy. There may be complications along the way, but I haven't experienced one yet. And since the complication of the way I was living was eventually going to be death, I'm quite willing to take the risks involved.)

The gastroparesis diagnosis was more than confirmed a month or two ago when they made me eat radioactive eggs and traced their movement through my stomach. And the repeated aspiration pneumonias were resulting in some gnarly cat scans. It got so I was on antibiotics more often than not and getting sicker and sicker and something had to stop. I don't know if I'll stop aspirating entirely at night, though I sure hope so. But it was happening more than once a week for the past few months and it hasn't happened at all since the feeding tube was placed. But it was a fight the whole way to get the right treatment that even all the doctors who really knew my case insisted I needed, to get the tube inserted in a way that wasn't horrendous, to get adequate pain care after the massive fail with the local anesthesia, and to be allowed a few days to learn bed mobility and eventually transfer skills after the surgery (they seemed to believe that if I didn't learn instantly I'd become lazy and never learn, and refused to acknowledge any of the slow and steady progress I was making just because it didn't happen all at once).

That's more than I intended to write. I'm tired. I should be home in a few days, at which point the trick will be getting all the support staff trained in tube care. But they're already starting the trainings. So hopefully going home won't be too awful. I desperately want to see Fey again. I've been seeing way too much of the inside of this hospital and not enough of anything else ever since August when my first big aspiration pneumonia + gastroparesis clusterfuck hit. It turns out the gastroparesis is the answer to the “chronic nausea” I'd had, as well as the fact that I felt better if I could fast for extended periods periodically, so this has been going on a long times they just didn't pick up on it until I stopped eating solid food (and then only after they saw me not eating, because they didn't believe me as a fat person that I wasn't eating, even when I dropped 40 pounds too fast for it to be anything else).

Anyway I'm rambling. I want to get out of here but I have to stay the weekend. I don't want anyone else to ever be pressured towards death in the way I was (sometimes quite openly) yet I'm sure it happens all the time and I have to find a way to stop it. I never envisioned myself in quite this situation for some reason, even though I've been in similar ones. Feeding tubes seemed like things that happen to other people. Not that I mind it. I completely love the tube. I just never realized my “little nausea problem” would rapidly turn into a severe condition that demanded this kind of measures.

I want to go back to advocacy especially after the things I've seen happen to me and others in this hospital, I just have been too sick to handle it, and the lingering cognitive problems from delirium last fall haven’t helped. But if I can do anything about anything I will help the disability communities locally handle this situation because its horrendous.

 

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I’m out. (I aten’t dead)

It's hard to write the sort of way I write on this blog so it has been hard to write about it here. Because my brain is very unrecovered from everything.

 

Went in. Got cured of pneumonia. That process was easy and quick for the doctors and long and harsh for me. Especially with the meds upsetting a stomach that had not seen food in weeks.

 

Which came of interest after they cured the pneumonia. Turns out I have gastroparesis. Partially paralyzed stomach. Hence more nausea and lower appetite over the years. Lost ungodly amounts of weight this time and they noticed finally that I'm burning muscle and his is very bad. Apparently it's likely I got this genetically tied to my mom's autonomic crap. Anyway it makes you empty slowly so you always feel full and a normal amount of food makes you throw up.

So lots of nausea meds later (I was literally one failed med away from a feeding tube being considered) I can now eat… sort of. A certain number of Ensure Pluses a day.

My brain has developed the ability to dream amazing food in amazing detail. So I no longer miss food as acutely. And I'm very happy Ensure exists.

But seriously of all the diseases to give a sort of former emetophobe, this… Gah. Well I already knew it as “chronic nausea”, its just the second hospitalization involving it was what it took for them to notice how bad it was. That and “I haven't eaten anything but broth and half servings of grits in weeks”.

 

My main problem is since I was there five weeks, my brain functioning isn't great. Started off with full bore delirium, then settled into what I have now. Low grade delirium. Caused by long term hospitalization. (the places cause it, they're perfect environments, think sensory deprivation) So my brain is… Sporadically operational. Continue not to expect much and be pleasantly surprised when much happen. Just still the gastroparesis is fairly severe even if managed, and the brain stuff is bad. I get lost in my own bed. The pneumonia is gone. Yay? That was so long ago now.

 

I'm very sorry to everyone who contacted me to ask if I was dead. I never intend to create that impression.

 

Ii have many things to say about what's wrong with hospitals and what hospitals should be more like. But I can't. Except one of them is causing delirium and then not detecting or trying to resolve it except in rare violent cases. Most delirious patients, like me, just lie quietly and you'd never know neon bugs were eating my eyelashes.

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My pneumonia got much worse and I’m in the process of being admitted to the hospital.

I’m exhausted past the point I knew exhaustion even existed. I’m glad my friends pushed me into this. Both of them were extremely freaked out after finally seeing me.