10:21pm September 11, 2014

Children in pain.

I reach out for my body.  It’s an instinct, all young ones must have it.  But instead of feeling hands and feet, I feel a blast of burning pain, like stepping into an oven.  I retreat back to the murky ocean I float in all the time.  The pain is off somewhere distant, but so is my body.  “Thoughtful” is a word I hear used a lot, when I stare off into space disconnected from my body.

Later, psychiatrists will call it severe dissociation.  They will diagnose me with dissociative disorder, not otherwise specified (DD-NOS).  They will talk about a ‘biological predisposition to dissociate’.  Even when the extent of pain I am in comes to light, they have trouble seeing the dissociation as a symptom of severe pain, rather than a thing in its own right.

Dissociation got me through 20 years of severe pain.  20 years in which by all rights I should’ve been curled up in a ball doing nothing, yet I was active, I was doing things, I was going to school, I was climbing  trees.  I didn’t know this was severe pain, I thought it was just another feature of the world.  Trees have bark and my skin burns, the sun shines and my skin burns, the sky is blue and my skin burns.

Now they say my mother has small fiber sensory neuropathy, that maybe I was born this way, inherited from her, however our nerves got like this.  It responds to Neurontin, and Lyrica, and Trileptal.  It acts neuropathic, it acts like central pain, nobody knows which is which for me.

This is a shout-out to all the kids — all the kids living with so much severe pain you wouldn’t believe it yourselves, because it is your normal.  And you go on trying to do normal stuff.  And sometimes you can’t.  Sometimes the pain just grips hold and you have no means to deal with it.  But you don’t know you’re in pain, so you push against it, and you think you’re weak, everyone else can do this, why not you?

Why not you?  Because you’re in severe pain and you don’t even know it.  You may not even recognize it as pain, because pain is such a broad and nebulous category.

My heart goes out to every single one of you.  All of us who are going through this now, as children.  All of us who survived and made it to adulthood and now know how much pain we were in, and wonder how we got through it.  All of us whose pain is being treated as DD-NOS or another psychiatric disorder, because all people can see is our emotional responses to pain, not the pain itself.  All of us who are told ridiculous things like “You have pain that gets less on Neurontin? The pain must be part of a seizure.”  All of us who are told that if we were really in pain we wouldn’t be able to do what we do now… they throw our expert coping mechanisms back in our faces, and want us to see pain psychologists who will teach us everything we already know about how to manage pain.  Some of them even still believe children don’t feel pain like adults do. We know better.

Everyone in this situation — I am thinking of you tonight.  Together we form a whole constellation of pain, burning bright.  And however well or badly we are dealing with the pain right now, we are people who are surviving.

2:00am September 3, 2014


You know when they told me had damage from reflux in my esophagus I was confused, because what reflux? I don’t have reflux.

I am contemplating on this painless mouthful of stomach acid and remembering the second degree burn on my arm that confused me because I didn’t feel it and am wondering if in reality I just can’t feel the pain anymore.

Pain is a weird thing.

Often I think I’m not feeling it, but it’s actually that I’m feeling it, my brain just categorizes it in a weird way.

See… for me… pain is a word.  And it’s a word that most people understand.  It’s a word, it’s a concept.  This concept is something that most people seem to understand as one thing.   One unified experience that everyone calls pain.

I grew up, among other things, with severe language impairments when it came to understanding words and the ideas that went behind them.  Pain is a concept that I only ever grasped in part.

I had severe neuropathic pain my entire childhood.  It was a constant companion.  I remember it from the first experiences I have where I can feel my body at all.  (I remember a lot from before I could feel my body, too.)  I remember sometimes trying to reach my body and being rebuffed by this blast of pain so intense that I fled away again and floated in the distance instead.  Floated somewhere where I could and couldn’t feel the pain, at the same time.

Anyway, as I grew up, I did not classify pain all as one thing.

All of the following things were totally different experiences that had nothing to do with each other as far as I understood it:

  • Sore throat
  • Multiple different kinds of headache (each one separate from the others)
  • Skinned knee
  • Sunburn
  • Neuropathic pain and/or central pain, whatever it was
  • Broken bone
  • Sprain
  • Impacted, distended bowels
  • Other constipation pain
  • Gastritis/duodenitis
  • Heartburn
  • That thing where every breath hurts every part of your lungs
  • Joint pain from hypermobility
  • Joint pain from other causes

And I could go on, and on, and on, because every single kind of pain was different from the last.  And even within one kind of pain, it could be different.  Like, there’s neuropathic pain the way it feels in my arms.  And then there’s neuropathic pain the way it feels when it spreads into a halo around my heartburn, all across my back, and feels like it’s icy cold and burning at the same time.  And those don’t feel the same either.

Anyway, it’s taken an ongoing, concerted effort to do the following:

  • Understand that what I am feeling is pain
  • Localize the pain to a part of my body
  • Understand what kind of pain it is
  • Understand where it’s coming from
  • Understand what to do about it

These are all sometimes impossible.  I often feel like I have pain and I can’t even attach it to my body.  It’s like… someone once asked me “what part of you hurts?” and I said “my keyboard” and it seemed as good an answer as any, I mean can’t my keyboard hurt?  But apparently not.  Apparently my keyboard is not a part of my body and therefore can’t possibly be what’s hurting.  But it does hurt.

I have a friend who was in the hospital with an intestinal blockage.  It wasn’t the actual reason she was there, it was the latest in a string of botched medical procedures that were doing their best to kill her.  And she kept feeling suicidal.  And she had no idea why.  She had never been depressed that way in her life, she had never had psychiatric problems, and she didn’t even feel depressed at that moment, she just had this overwhelming urge to kill herself.  And for the life of her, she couldn’t figure out why.  She figured she’d better not tell anyone, though, in case they make her stay even worse by admitting her to psych.

Anyway, a nurse came in, told her she had an intestinal blockage, and administered a very heavy-duty painkiller.  The suicidal urge went away instantly.  And so did a sensation that my friend hadn’t even noticed.  And that sensation was pain.  She had been suicidal because her pain had been a 9 on the pain scale.  When the meds wore off and the pain came back, she was able to feel the pain, to localize the pain, and to understand it was pain.  But because she had not had the chance to experience it, and therefore categorize it as pain, she hadn’t ‘felt it’ even though she did feel it and was reacting to the fact that she felt it all the time.

So one thing to watch out for, if you’re looking for whether you’re really in severe pain that you can’t feel, is seemingly psychiatric symptoms that come out of the blue.  For me, it’s often this intense boredom — at least, boredom is the only word I have for it.  I don’t get bored, ever, normally.  Not even a little.  And then suddenly I get intensely bored.  And that only ever means that I’m either very sick or in a lot of pain.  The ‘boredom’ seems to come from the fact that the illness or pain makes it so that I can’t do things I would normally do, or that I can’t get the joy out of them that I would normally feel, so my brain goes “I’m bored, I want something different.”  But instead of following my brain’s lead and finding something to do, I often at that point have to scale back what I’m doing and just rest, and if I can manage to rest hard enough, the boredom can go away in an instant, in the best-case scenario.

But the thing is… all those kinds of pain I listed above, they’re different sensations from each other.  The only reason they’re all referred to as pain, is that is a human category we impose on all these unrelated-seeming sensations.  It’s probably a useful category to impose, but it’s still an imposed category.  And if your brain is at all like mine, it doesn’t deal well with imposed categories like that.  It simply doesn’t compute.  How are the sensations of a sore throat, a toothache, and an impacted bowel the same thing?  They don’t even close to feel similar.

And I’m someone who relies more on sensation to understand the world than I rely on category.  The feeling of a sore throat is a sensation.  Pain is a category.  So for me, it’s sensation first, category second.

But to understand that you are in something called pain, you do need that category thing to be involved to some degree.  And it’s possible that you are in pain, even a lot of pain, but you’re not categorizing it as pain and therefore not experiencing it as pain.

There’s also one more explanation.  And I can tell you — nobody talks about this.  Nobody.  Except pain patients, sometimes.  But it’s vitally important information for any pain patient to know.

Chronic, severe pain feels different from acute, severe pain.

Chronic, severe pain feels so different from acute, severe pain that they might as well not even be the same thing.

Chronic, severe pain can have a very strange, paradoxical element to it, where you do not feel the pain for long stretches of time.  You behave as if you are in pain.  If your pain is in your head, you might clutch your head the way you would if you felt the pain and had a headache.  If your pain is in your teeth, you might hit your mouth repetitively with your hand.  (I don’t know why so many people have that urge with toothaches, but we do.)  You may make faces as if you are in pain.  You may find yourself lying down and unable to function as if you are in pain.

But even as you do those things, you don’t feel the pain consciously at all.

And you start to wonder, “Why is my body acting like it’s in pain?  I’m not in pain.  This makes no sense.”

The first time I told this to a friend who had severe chronic pain, she said “What you just said?  Means that I know you’re in pain for real.  Because nobody who hasn’t experienced severe chronic pain would ever ask that question about their own pain.”

Apparently something about our bodies makes severe chronic pain come in cycles, where we feel it some of the time, but not others, even though it’s there the whole time.  Even though we’re actually feeling it the whole time.  It’s just that some of the time we can feel it consciously, and other parts of the time we only feel and react to it unconsciously.  I have no explanation for that second part.  But I have talked to a lot of people with severe chronic pain, and most of them have experienced this.  It’s not so much a pain tolerance, as it is a feature of this kind of pain itself.

And it’s why there have been times when I have been unable to get up off the couch, unable to communicate, only able to give my friend this creepy thousand-yard stare, moaning out loud, clutching my face, and yet have no idea why I am doing those things, being faintly embarrassed by them, and wonder WTF is going on.  Until my friend reminded me that my pain was climbing up to 9 on the pain scale, which is an area where pain gets just plain weird.  

Also, I don’t know how you dealt with childhood severe pain, but I dealt with it by severe, severe dissociation.  So severe that once my shrinks started looking at it, they diagnosed it as dissociative disorder NOS, kept telling me that I had severe dissociation, and attributed it to a “biological predisposition to dissociate” because they could find no other reason I was dissociating so badly.  By dissociating I mean disconnecting from myself, disconnecting from my body, I don’t mean multiple personalities (although some wonderful bullies managed to convince me I had that, too :-/).  I just mean an extremely severe disconnection from myself and everything around me, which is how I handled having pain that never got below six on the pain scale until I got onto Neurontin.  (Quite by accident — I was given it for seizures, and the pain went away.  I told them about the pain for the first time in my life, and they said “If Neurontin treats it, it must be a seizure.”  This was before they knew about Neurontin’s effect on neuropathic pain.  Later in life I told a doctor that story, omitting the name of the drug, and she said “I know which drug you mean” and wrote a script for Neurontin on the spot.  Later I switched to Lyrica.)

I don’t know how good you are at dissociating.  I’m amazing at dissociating.  I’m so good at dissociating that it has taken me a long time to learn to ground myself in my body and in the real world.  Because dissociation was my first line of defense against a pain that I had no name for and no treatment for, for about 20 years (excluding those few months on Neurontin age 15, and also Lithium oddly enough treated it a little when I was 17).

Anyway, that pain… it was like just a part of the world, you know?  It was there’s the trees, there’s the sky, there’s the sunshine, there’s the grass, there’s the pain.  I didn’t know the pain wasn’t supposed to be there.  I didn’t know the pain originated in my body or was connected to my body.  I felt it, and I felt it worse some days than others, but nobody ever cut me any slack even when I was definitely behaving in ways that in a nonautistic child would be seen instantly as pain-related behavior.  Not that they knew I was autistic, just that being autistic sometimes changes how your body looks when you’re in pain, and therefore how people react to you.  I found that for short-term acute pain people could often tell I was in pain, but for chronic severe pain nobody noticed a damn thing, least of all me.

Also, everything I’ve read about central pain (which feels similar enough to neuropathic pain that most people can’t tell the difference without some way of measuring what’s what) tells me that even neurotypical people experiencing central pain don’t describe it to their doctors as pain.  They instead describe it to their doctors in terms of what they can’t do anymore, that they used to be able to do.  They talk of debilitation, sometimes torture, often emotional problems, but never pain.  Because the experience of neuropathic and central pain is so utterly different from what most people are used to as pain, that even otherwise-neurotypical people (I say “otherwise” because you can’t have this kind of pain and be neurotypical) can’t see it as pain.

If you’re interested in learning more about central pain (which I would not be surprised if it goes along with mito):

I have all of those symptoms, to the letter, but we don’t know if it’s central pain or neuropathy, or some combination of both, because it can be really hard to tease out which is which.  And I have had all these symptoms since I was born, as far as I know, which is what’s unusual.  Usually these symptoms happen after something damages the nerves.  But my mother has small fiber sensory neuropathy, so it’s possible I inherited it from her.  Who knows.

So I don’t know how much of this is useful to you, but I thought I’d let you know, because there are things that even most pain specialists don’t seem to know about pain.

TL;DR:  Pain is a category we impose on a wide variety of sensations that don’t actually have much to do with each other, in terms of how they feel.  This can make it really hard for people who rely more on sensation than category, or people who have trouble with words and categories, to understand our own pain.  And there’s lots of other reasons we can “feel pain without feeling it”, too.  Which I go into in so much depth that this post is waaaaaaay too long.

12:20am June 23, 2014



Things are in pieces, they really are.  My fingers are my lifeline out of the chaos.  I can’t tell you, I can’t tell you how far away everything is.  I can’t tell you how it’s just like one thread connecting me to you, using words.  I’m very tired, and I’m in a good deal of pain.  There’s random images and words and sounds passing through my head.  And pain, that doesn’t go away.  And it just keeps happening.  (I started writing this after my last post, whenever that was.)

I think right now I can pull myself out of it, a little, but I don’t know if that makes it better, or worse, in the long run.  I just don’t know, I feel horrible.

Bonus:  I went to sleep, and I had dreams that were overloading, and full of pain, and woke up overloaded, full of pain.  But better than before, so it wasn’t nothing.

11:01pm June 22, 2014


Things are in pieces, they really are.  My fingers are my lifeline out of the chaos.  I can’t tell you, I can’t tell you how far away everything is.  I can’t tell you how it’s just like one thread connecting me to you, using words.  I’m very tired, and I’m in a good deal of pain.  There’s random images and words and sounds passing through my head.  And pain, that doesn’t go away.  And it just keeps happening.  (I started writing this after my last post, whenever that was.)

I think right now I can pull myself out of it, a little, but I don’t know if that makes it better, or worse, in the long run.  I just don’t know, I feel horrible.

7:26pm May 29, 2014

So I’m taking THREE classes at once right now.

Which is more than I’ve ever even tried before.

And I’m keeping up with all of them.  And I don’t mean I’m doing them at the last minute every week with the deadline hanging over my head.  I mean I’m actually just keeping up with them at random points during the week when I have the energy.

And so far I’m averaging a B+ in one and an A- in the other two.

This is bizarre.

I’m sure the dexamethasone has something to do with this, because the last class I took I was taking one class and it was taking all of my energy just to keep up. 

And some of the classes I’m taking right now have quite difficult material, too.  My eyes started crossing during one of the neurology lectures about the difference between a map and a meter, although I think I finally got it.

I think this is also showing that the more I use my brain, the more it works.  Which is what they told me would happen with recovering from delirium, but I think my brain is actually going well beyond its baseline even before the delirium.  Which might protect me from further delirium, I hope.

But doing these three classes is easier than doing the last one class I did, or the two before that.

Sort of like doing 40 jumping jacks is easier than doing ordinary stuff around the house used to be.

It’s hard to gauge what is enough and what is too much.  And I know that I can slide over those lines too easily.  And I also know that having my brain working in all these new ways, leaves it vulnerable in certain ways that I have to be very careful about.  Because however well I’m doing, there are downsides to it.

And I think the amount of pain I’ve been in is part of the downsides.  I’ve been in a lot of pain lately.  A lot.  I’d gotten it pretty well-controlled, but it’s not that well-controlled anymore.  It’s both joint pain and neuropathic pain.

I’m hoping physical therapy will help with some of the pain though.

But seriously excited that I can do this many classes at once and not even feel like I’m missing out on any of them.

3:18am May 10, 2014


I have the background to know the basics of how Ativan/lorazepam works neurochemically.

I have no clue why I’m able to use it as a rescue med not just for anxiety, but also for executive function and certain movement stuff. I suspect it has something to do with the reasons it’s commonly prescribed for autistic catatonia, but I’m not sure? I don’t know why it’s effective in that context either. Either way, it’s so useful for me, and I’d love to know the science behind it.

It’s always been incredibly useful for me, too:

1.  For anxiety attacks, especially the kind I have whenever I’m hospitalized, they basically put me on Ativan every 4 hours for the duration of any hospitalization and the anxiety attacks miraculously vanish.  Without Ativan, I basically do fine the first day or two then get blindsided by such intense anxiety that it’s all I can do to keep breathing.  This would be bad enough as it is, but with adrenal insufficiency, avoiding unnecessary stress is life and death.

2.  It was the first thing discovered that actually worked on my seizures.  They of course didn’t fully know they were seizures.  My psych records are full of elaborate descriptions of what my friend says are absolutely what my complex-partial seizures look like.  Then they get worse on neuroleptics (which lower the seizure threshold) and better on lorazepam and nobody puts two and two together even as I’m being evaluated for temporal lobe epilepsy.  They still use it sometimes in my IV for seizures if I’m hospitalized and unable to use my feeding tube or (prior to feeding tube) unable to keep food down.

This makes me extra-pissy when I saw a video or a cartoon or something from the point of view of an ER nurse, where a patient says she has seizures that respond to lorazepam and the nurse says “but lorazepam isn’t a seizure med”.  It may not be a usual first-line treatment for seizures, but it does in fact treat seizures, much as many similar meds do.

3.  My parents always said it “grounded” me.  I assume this is because I was having a lot of seizures at the time, but it may also be about the autistic catatonia.

4.  It helps a little bit with my nerve pain, as I’ve been discovering this week.

5.  It works really well on me for nausea as well.  Which is a known thing that it does, even though most people aren’t aware of it.  

Right now I’m prescribed it for nausea and anxiety both (one dose at bedtime, then PRN the rest of the time).  But I also sometimes take it for really bad nerve pain, and it does help me stay in the rhythm of life physically and makes me feel “clear” with my body, i.e. treats the autistic catatonia, I suspect.  I don’t take it often, and when I do take it it’s often just at bedtime, but it works.

3:04am May 7, 2014

If I fall asleep now it will be amazing and wonderful and beautiful.


Because I need sleep because nerve pain is awful.  And because a lot of my night meds like Benadryl are combined together right now this time of night and that’s not a bad thing when sleep-deprived and in pain.

So I hope for some rest, maybe even all night long.

And I did fall asleep.

And I woke up.

And the nerve pain is so much less it’s amazing.

I’ve still got some, but it’s nowhere near as bad.

For some reason, sleep deprivation and stress both have a severe effect on nerve pain for me.  And especially, stress related to language use seems to do it to me, and nerve pain seems to spur me on to get stuck in language in an attempt to numb myself, so that can turn into a vicious cycle.

There’s only a couple parts of me that still hurt a lot, and those are because I slept a long time with stuff pressed up against them — one of my arms, and my face because of my bipap mask.   But that still doesn’t hurt anywhere near as much as my whole body did yesterday.

Let’s hope it stays this way.  I hate nerve pain.  (Or central pain, or whatever-TF it is.)

8:14pm May 6, 2014

If I fall asleep now it will be amazing and wonderful and beautiful.

Because I need sleep because nerve pain is awful.  And because a lot of my night meds like Benadryl are combined together right now this time of night and that’s not a bad thing when sleep-deprived and in pain.

So I hope for some rest, maybe even all night long.

1:24pm May 6, 2014

Neuropathic pain sucks donkey balls.

It’s really bad today and anything that touches me hurts.  And it’s not just that anything touching me hurts.  It’s that anything that touches me leaves this burning tactile afterimage for at least half an hour after it touches me.  And that includes any part of my body touching any other part of my body, clothing, bedsheets, glasses, anything.  

I have no idea why it’s bad today.

7:24pm May 1, 2014

I’m feeling better than last night.

I got some sleep finally this afternoon.  And I’ve raised my Trileptal dose back to where it was before I decreased it yesterday.  I’ll experiment with decreasing it another time, but it’s going to be a time when I’m much less vulnerable to stress, because stress + nerve pain = suckage.

And speaking of stress, I did stress-dose tonight on the dexamethasone just in case, because even though there was no single stressful event last night, last night was very stressful both physically and emotionally.  I didn’t double the dose, I just went from 2.5 mL to 4 mL.  But hopefully that will get me through this okay.

I’m quite exhausted, still.  And I can feel the edges of the nerve pain trying to come back a little.  But I feel so much better than this morning.  I just hope this doesn’t jinx it, because I felt lousy this morning.  Also took a bit of lorazepam tonight, because that won’t just help with the anxiety, it’ll help with the nerve pain a bit too, I’ve found.  I rarely take it and rarely take much, but when it’s needed it’s needed.

7:43am August 17, 2013

Nausea and pain. Nausea and pain. Nausea and pain.

This week is taking its toll.

Both the exertion from the doctors appointments, and all the water and feedings I’ve missed as a result.

There’s searing pain everywhere. The deep aches in my joints but worse the fiery zapping along the surface.

I have to be air conditioned. Have to. Because heat exhaustion set in yesterday.


The cold air makes my skin burn. I am trying to deflect it with bed sheets. I feel dry everywhere. But I’m too worn out to get up and put water in my tube.

And I’m losing a lot of water too because my stomach decided to produce so much fluid that I almost threw up last night just ten minutes after draining my g tube and taking Zofran, Phenergan, and Benadryl for nausea. It’s been like this for days and getting worse.

My overnight drainage bag is almost full. It’s this weird dark color I can’t tell if it’s green or brown. If I don’t wear the drainage bag pretty much all the time I feel like throwing up. Hell if I do wear it I am pretty nauseated, just not in throwing up territory.

And I’m an expert at avoiding barfage. A childhood as an emetophobe and six nausea meds plus the ability to drain my stomach on command mean I’ve got pretty good self control.

But this week seems to be kicking my butt. Although I’m impressed that I could do it at all. Not safely. But the Mestinon must be working because I’ve been stronger. So much stronger that most of the doctors I saw noticed it and commented!  So mostly the problems have been exhaustion, overload, and pain, but for once not much weakness. Unfortunately exhaustion overload and pain are plenty enough.

I hope I can rest this weekend and get back to normal. My mom is visiting for a little while and I want to have energy for that.

12:49am March 4, 2013

Death and disability and chronic illness.

I feel like it’s hard to talk about death around some people. They don’t want to let it into their consciousness. And they get so twitchy I regret bringing the subject up.

I have no desire to die, but I feel like I’ve “met” death and made my peace with the possibility. When you end up in the hospital and the ER with bowel blockages regularly, it’s difficult to avoid the subject.

And it’s not just a subject. It’s a thing. It sits there in the room with you. It’s pale white. And if you’re close enough, you feel a gravitational pull. You get pulled in closer and closer. And you’re too weak to even consider resisting. And it feels right. Almost peaceful. Like lying down when you’re exhausted. But if you do survive — slowly you gain the ability to think about fighting, then to fight the pull, and finally you’re far enough away it can’t get you. For now. Sometimes it lingers in your room if you’re doing really badly for a long time. It just sits there until you’re far enough away.

But you know this is temporary. You know one day you won’t be able to resist. You know you will fall into the whiteness and rest and it may be peaceful or painful but it is what it is. And then your body will feed the bodies of all these other organisms and it’s all actually rather beautiful as long as nobody is around to smell it. So death is part of helping other life live.

So that’s how I’ve come to relate to death on one level. But I don’t want to die before my time, and I don’t want to die because I or some doctor did something stupid. (My DPA tells stories of me in the hospital with severe pneumonia, unworried about dying itself but quite worried about dying due to doctor or nurse stupidity.) And I believe I’m obligated to live as long as possible for so many reasons I won’t go into them. But they aren’t fear of death. I have a sort of temporary surface fear that keeps me alive, but deep down I know death is not bad.

Anyway it’s hard to discuss death with a lot of people. They misjudge your motivations. They try and reassure you in order to reassure themselves.

But I’ve found I can discuss death with a lot of other disabled and chronically ill people without being misunderstood. We laugh about it. It’s a relief. We’ve all thought about it. We’ve all had to. And it turns from a threatening subject into something where we can discuss our feelings and wishes candidly without feeling like we are going to break someone who seems much more fragile for being healthy.

And that’s a big relief. I carry all these thoughts and experiences and questions inside me, afraid they will hurt people to think about. It’s nice to find people who’ve had a lot of the same thoughts and experiences.

It’s also good to know people who can feel the gravitational pull of death acting on me when I don’t. Last year I made it to the hospital, where they saved my life, because of that. One friend said go to the hospital the minute you see death around. Another friend spotted death just before I did. A third friend helped me get admitted for out of control pneumonia.

I think about that now when I’ve aspirated for the sixth time this year and had an infection to match. You never know when it will be barely noticeable and when it will become pneumonia. And when it goes to pneumonia you never know how dangerous it will get, if you will find death in the room with you making you feel like it would be a relief from intolerable exhaustion. So much exhaustion you have no energy to fear.

And something about gastroparesis has brought the subject up again. It’s not that it’s lethal right now. But I nearly starved last year and it has gotten worse these past years, you never know how much worse it will get and what then.

So you think of it. And other people want to imagine that it will never get you. That you’ll live forever. And you might live to ninety. You might also live to next week. It doesn’t announce ahead of time when you’ll fail at getting away. And this upsets people. But it’s the truth. And everyone who’s been close to that edge often enough knows it’s the truth. It’s hard to un-see something like this.

And you think about it in hospitals. When the woman in the next room is delirious, disoriented, dying, and lonely, and there’s nobody for her because the hospital doesn’t let patients organize to help each other. Just someone to hold her hand would do wonders but there’s nobody. I pick up emotions too hard sometimes. I can identify with being delirious and too confused to know if I was dying — the disconnection, flying into pieces, out the window, will I ever have another coherent thought again? Is this how it ends? Will it end when I’m too out of it to notice? Things like that go through your head when you’re delirious and death sits patiently by your bed, with no malice, not trying to pull you in, but potentially succeeding.

Death is universal. I’d love to talk about it candidly, more often, without fear of breaking fragile people whose fragility comes from never having seen death. People who think I’m morbid and shouldn’t talk about it.

Don’t worry though. Death is not hanging around right now. But a few little changes in my body. Tiny changes. And it could. And one day I will be absorbed into it and become part of the carbon cycle and turn into other things. Tomorrow, or fifty years from now, nobody can know.

That’s nobody. Anyone healthy could get hit by a bus. Anyone not healthy still may stick around longer than anyone imagines. And even people with a week to live won’t always know which day. People attempting suicide often pull back at the last moment or otherwise survive their attempt. People on death row may face delays. So people who expect to live to 100 may die at 30, people expecting to die may outlive the age they expect. People try to hide from this unpredictability, but you can’t hide from death even if you cover your eyes and stick your fingers in your ears.

I’d rather know about it, think about it, talk about it, plan for it, make ridiculously irreverent jokes at its expense, all with people I know and care about. It’s upsetting, but it’s part of reality, and not all of it is bad.

And I don’t appear to have the kind of body that gives me the luxury of hiding from this. Every new diagnosis tells me to take care of myself. It’s so easy to land in the hospital. So easy to need a feeding tube. So easy to get a terrible infection and be unable to clear it. So easy to be unable to eat.

It’s like the adaptations I’ve made lately are a house of cards that can fall down at the slightest provocation. And a lot of my medical problems compound each other in terrible ways.

Last year, I aspirated while weak from not eating (gastroparesis) and developed pneumonia. It got worse because bronchiectasis makes it hard to clear. Death was hanging around so I got admitted to the hospital. They filled my IV bags with antibiotics that made me vomit endlessly. The vomiting motion wore out my muscles (neuromuscular disorder) until I collapsed, still vomiting and very delirious. Nobody was around to watch if I aspirated more. And my breathing muscles were greatly weakened by all the heaving. So were the ones that let me vomit without aspirating.

That’s just the beginning of why I was there five weeks. But it felt for the first week especially, like nobody was noticing how my combination of conditions worked together to put me in more and more danger. Like most patients at that hospital, I had a huge collection of diagnoses, and like most patients there, I was only receiving treatment according to the things I was diagnosed with — pneumonia and later gastroparesis. Was also diagnosed but never treated for severe delirium.

Things like that make you think of death too. That time, I got away. Someday, like everyone, I won’t get away. I want to be prepared. And other gimps seem to often have had the experiences that give them the same basic experience and understanding I have on the subject.

10:50pm February 28, 2013

Okay WTF.

So now with all this new diagnosis stuff and my mom’s various diagnoses, I’m being told by someone who understands medicine better than I do, that its likely I have one of those weird conditions that mostly runs in one family only. No wonder they were so eager to do genetics studies when they found out my mom had a child with the same symptoms. (They haven’t yet but they’ve talked about it. I don’t mind if they do, because it would be something too rare to generally screen pregnancies for, and it might help actual treatments.)

This is… kind of a lot to take in though. I’ve known things in my body were going seriously wrong since I was 19 or so, but it wasn’t until my mom got sick and I started getting too severe for survival without proper diagnosis, that I started getting any information on what it might be. (Seems to be some weird cluster of congenital myasthenia and sensory and autonomic neuropathies. At least that’s what Mayo suspects of my mother, and apparently when these things run in families it’s only like one family known to have each particular variety. Or something. And my symptoms are similar to my mothers except she’s got more severe ones in some areas, and I have more severe ones in others. And the age when symptoms went really out of control is different for both of us, plus my grandmother had some similar stuff, and so on and so forth.)

I just feel… Really weird to be getting even the tiniest sliver of actual answers and it feels weird. Both good and bad and just very weird. I’ve been coasting all this time on really vague diagnoses like chronic nausea instead of gastroparesis. And suddenly there’s something really concrete in front of me and my mom and it feels weird and I can’t describe it other than weird and uncomfortable and relieving and scary and I don’t know what.

6:03am December 1, 2012

Okay I thought this might happen.

Today, the earliest part of today, was like… how can I describe it? Sometimes even when I’m in a great deal of pain, I feel, to start with, relatively rested and fresh. So even though there’s a lot of pain, it doesn’t get to me on an emotional level as much as you’d think it would. Even though I spent almost all of today lying still and doing nothing, because I couldn’t do more than that.

Then I did a few things, which reduced the amount of energy I had. And then the pain was the same but added exhaustion into the mix and it changes everything.

And by now. I’m thoroughly exhausted. I’m extremely nauseated. And I still have all that pain, and more. And I no longer have that initial energy that lets me deal with it better.

Except, in a way, I still do have some. You don’t want to see what happens after several days of unrelenting intense pain, because every time I feel like I’ve run out of energy to handle it, I run out of even more, and things start getting really, really ugly.

I hope this doesn’t come to that point. I mean I’ve been in pain a lot, but it’s changed enough to… not have that relentless marathon-running feel to it. Yet. I hope it doesn’t go that direction. I feel bad enough now. Even after taking my latest round of nausea meds (plus extra Benadryl, which actually, surprisingly, is a decent add-on nausea med). Now I’m going to try sleep, and if that doesn’t help, argh.

12:49pm May 30, 2012

Autistic Problem Number 37: Not wanting to wear clothing, but having to put things on because other people seeing you naked is more unbearable.

Or in my case, not wanting to wear clothing, but having to put things on anyway. Because while I have very few qualms about people seeing me naked, I’ve learned that having very few qualms about it sets me up to not recognize the first level of intrusion when abuse is going on. So I have to train myself to remember never to be naked in front of people, and to feel invaded if people see me naked. Even though much of the time, I’d way rather be naked.  Because clothes hurt very easily.


Autistic Problem Number 37: Not wanting to wear clothing, but having to put things on because other people seeing you naked is more unbearable.

Or in my case, not wanting to wear clothing, but having to put things on anyway. Because while I have very few qualms about people seeing me naked, I’ve learned that having very few qualms about it sets me up to not recognize the first level of intrusion when abuse is going on. So I have to train myself to remember never to be naked in front of people, and to feel invaded if people see me naked. Even though much of the time, I’d way rather be naked. Because clothes hurt very easily.