Category Archives: Personal history

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?

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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

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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.

Empty Mirrors and Redwoods

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This was originally written and posted elsewhere on February 25, 2012.

This is in response to a quote:

“When someone with the authority of a teacher, say, describes the world and you are not in it, there is a moment of psychic disequilibrium, as if you looked into a mirror and saw nothing.” —Adrienne Rich

This is the story of my life. Not just teachers. Everyone. Everywhere. Not a moment. A lifetime.

Which is probably why one of my biggest goals in learning to communicate with people, in both standard and unusual ways, has always been to shout to the world that I exist, who I am, and that I am not going away without a fight.

It’s also why it hits me so hard when anyone tells me I’m impossible. They usually do it in the most fleeting ways. As in they don’t even give me a full once-over. In a moment they have decided I don’t exist. Sometimes it’s a matter of fact statement. “Real people don’t work like that.” Other times it is accompanied by some of the worst bullying I have ever encountered. “Real people don’t work like that. And I will stomp you into the ground for having the audacity to be who you are.” Any way it happens it hurts. Not just for me. I’m trying to make the way easier for others like me. I don’t want anyone ever to have to go through this again.

There is nowhere I can go that this won’t happen. Even if I try to go away from people, they can still follow. The closest I’ve ever come was when I first moved out on my own. I lived alone with my cat in a redwood forest. I would turn off the Internet, go outside, and talk to the rocks and the trees and the slugs and the fungus.

I’d fill my pockets with rocks. Or sit on the ground and stack rocks all over my body. And the rocks would tell me about my own solidity. They’d tell me about being part of mountains. And avalanches and mudslides. And volcanoes. And all the other things rocks know about. A small piece of granite in my hand would tell me about the smell of sun on a granite mountainside.

They told me I was part of the world too. Of the larger world. Many people say the world when they really mean the social world of human beings. The world is so much bigger than that. They told me that even if no human being told me this in my lifetime, that I do have a place in the world. A very small, particular place just for me. They said that everyone has a place like that. And that when I am done with my place in the human world, I will turn into all the animals and fungi and plants and microbes that will likely eat my remains. And then I will have other places in the world entirely. I may yet be a redwood tree when I grow up, just like some rocks turn into sand in the ocean.

Until now, I’ve never been able to fully express what all those rocks and stuff did for me. It was a surreal period of time. When I was online or with people, the main message I got was I didn’t exist. And even when the people weren’t around, their general behavior patterns followed me telling me I was a worthless, unreal waste of space. Then I’d go out to the rocks, in my driveway and elsewhere, and suddenly I had a place in the world and everything made sense. They didn’t tell me all these things in words. They told me through the patterns of what they were and where they’d been and what connections they had to other things. It’s hard to translate it into words or ideas, and harder still to translate into the dead, disconnected world that the mainstream culture wanted me to believe in.

So the rocks, the slugs, the dirt, the trees, and the fungus seemed to have no problem with being in the same world as me, and letting me know in so many ways that I belonged there. It was human beings that shut me out. The only thing I could write of it at the time: “I walk inside and I disappear; I walk outside and I have a place in the world again.”

But it wasn’t as simple as momentarily looking in a mirror and seeing nothing. My friend said it was more like looking at a painting without them in it and then being told it was a mirror. For me, it was not seeing myself no matter where I looked. I mean, on a deep level, I knew that I existed and that one day I would find at least one person like me. Knew it bone-deep, though I never imagined how much like me they’d be. But on the surface of my mind, it felt quite different.

On the surface, it was terror. Absolute unreasoning terror. That I might not really exist at all. That I might just be a thing. Forget not seeing myself in the mirror, I didn’t see myself anywhere. I felt like I was floating in a dark place without being able to perceive myself or anything around me. Or falling, living in free fall. Once it really started hitting home, I became terrified for my survival.

Because my life was not full of examples of anyone like me. Education was one way. I started junior high, high school, and college but I never truly finished them and deep down I knew I’d never finish. (Don’t make me explain the twists and turns in my educational history that made that statement possible.) I spent the majority of my teen years in either no school, institution schools, or special ed. And I knew that to the rest of the world none of us were real. And just — I can’t explain it fully — this caused an intense, deep terror of what my adulthood would be like.

After I fell off of the conveyor belt of life that all the real people were on, I was presented two, and exactly two, choices for my future. The first choice was that I could remain as I was, and go to an institution forever. The second choice was that I could get better and live on my own with no disability-related support. People called the second one words like “hope” and “we believe in you”. I called it a mirage. And it was really that second option that drove me to suicide over and over. Because that was the option I knew I would never become. And having it thrust in my face and called “hope” only gave me the message “hope is impossible”.

I knew this because I could see things about myself that none of those hopeful people could see. I saw that every month that life went on I was being expected to climb harder and run faster. And I saw that the things preventing me from doing those things… even if my skills were staying the same I’d be dropping further and further behind. But my skills were getting worse. And I knew exactly what that meant in terms of how feasible choice #2 would ever be.

Somewhere around when I got diagnosed, I coincidentally found Nobody Nowhere in a library. I brought it home because of nothing more than the picture on the cover. By the first page, I was in shock. By the next page, I cried. This was my first ever glimpse of myself mirrored in the eyes of another human being. I got profoundly lucky. I collect autiebiographies now, I think I have over a hundred, and that’s still one of the closest to my experience. If basic types of autism truly exist, she and I are in the same one. We are different in many other ways but not so much in that one. The first time I ever, ever was told by a human being in any form that I existed: I think I was 15 years old.

Somewhere in there I began making plans to escape. To run away to the woods and find some way to hide there and scratch out a living. But every time I tried going, I was caught long before I got there. People began making theories that something in my brain caused me to wander aimlessly with no real purpose in mind. They got me a bracelet that said so, that I couldn’t take off. Just one more mirror I didn’t exist within.

One reason I write about my experiences is to force the world to acknowledge who I really am and that I exist, that we exist as people like each other in these ways. But wrapped around that just as much is the desire to do for other people what Nobody Nowhere did for me. I know that a lot of people like me, given our language issues, don’t write a lot. And I want to be one of the ones that does, so that other people will benefit. And I don’t mean just about autism, although that will always be a large part of it. I mean everything in me that most of the world doesn’t acknowledge as a possibility let alone a large number of real life people. This happens to all marginalized people, and it also happens to people who just have things going on that are rare or contradict mainstream culture or the culture they live in. And I’m all of those things and I know how hard it is and I want to make it easier.

I also want to do something else. I’ve long had a video project in mind, but I don’t know if that will ever happen, so I do it in other ways too. I want people in the position I was in growing up, to know that choice #1 and choice #2 are not the only viable choices for a person to have. People kill themselves when they think they don’t have choices. And there are not enough choices in the world — but there are more than two.

Some truly nasty people once had a tittering little chat over my having said something like this once. It went something like “Why does she think her life is so great? She’s on welfare. She’s in public housing. She’s poor. She’s always going on about how wonderful this is, but that’s a shitty excuse for a life.”

I can’t even begin to explain the screwed-up worldviews that led to this little discussion. Including a complete misunderstanding of what does and doesn’t make disabled people happy with our lives (link to PDF). But really what it comes down to is this: Growing up, I learned that if I remained significantly disabled I would be in an institution. No other options. I knew long before anyone else did that cures were a pipe dream. I’d try hard to act like whatever they tried on me was making me better but that was bullshit and it fell apart fast. There was no such thing as a combination of freedom, and being unable to work or take care of myself. None. It wasn’t even imaginable. Nobody even made me aware of disability benefits or daily living services until I met other disabled adults.

To have no good options is a terrible thing. I want people to know there are options. They don’t work out for everyone. But to have the knowledge that there’s one option wakes your mind up and tells you there might be more. To actively look beyond the borders of your imagination. To be creative and keep trying. I know that the options I have now may disappear if the Republicans get their way, if the government collapses (even in a good way), if the economy gets ever more trashed. But my experiences since adulthood have stretched my imagination and taught me to keep trying for something until the day I die. Even if right now will seem downright luxurious compared to what is to come.

But what do I have now that is so special to me? I have a steady (if meager) income without having to destroy my body trying to work. I have subsidized housing, so I can (mostly) afford bills and food. I have housing at all. I have wheelchair accessible housing… mostly anyway. I have Medicaid and Medicare for health insurance. My GP is excellent and most of my other doctors are good. People actually pay attention to how to detect and treat pain, infection, and other medical stuff despite my communication problems.

I have a means of communicating in words that isn’t speech. I have learned how to communicate in words rather than just imitate what I thought was expected. I have a wonderful cat. I have friends who know me as myself, not a mirage, and who are not bullies in disguise. Including friends where we can understand each other without having to try too hard. Including some who can do so without words. I have learned some degree of self-respect and basic ethical awareness when dealing with people. I have a meaningful spiritual life. I have Internet access. And I’m alive.

So I have the basics — and more — and that is more than I ever expected. There’s things that would be better if they were different. But I can live this way fine. And I just wonder what kind of life a person has to have led to act like what I have is worthless.

The thing about never seeing yourself reflected by the people around you is that it’s simultaneously traumatic and invisible. So you feel terrible but you can’t put a finger on why. So unless you have someone telling you what’s going on, you’re eventually going to turn it around on yourself and become really miserable. And then your society generally sees your feelings as the problem, which just puts another layer of the same thing. It gets really convoluted. Because the answer — actually acknowledging you exist — is apparently too simple for some people.

This is why I freak out so badly sometimes when i realize I’m talking to someone who’s force-fitting me or what I’m saying into categories in their head that make no sense. It’s not the one instance. It’s the lifetime of little instances built up over the decades. It’s the fear — complete, unreasoning terror — of things ever going back to how they used to be.

I can’t imagine what it must feel like to grow up in a world where people see you. And talk to you. And about you. And not just about a series of illusions and mirages in their heads. I’m not talking about going out of their way to be inviting, even. Just noticing would be enough. Because when people notice, they act on what they’ve noticed, and it just unfolds naturally.

And if you ever wonder why I am so attached to redwood forests, it’s that. Both the one I was born in and the one I first lived on my own in. In both instances there was an intense sense of exactly where I belonged in the world. Everything around me told me that. And if I want to remember, all I have to do is think about that environment. Trees, soil, rocks, slugs, fungus, owls, moss, lichens, everything. I’m not able to live there but that doesn’t prevent me from being aware of these places. And whether it’s because I was born in such a place, or some other reason, that gives me the most intense feeling of belonging in the world that I’ve ever known.

The Scarf — A Comic About Delirium

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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:

The Scarf.  Stylized drawing of a woman holding a red scarf, inside a white circle, on a black background.

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.