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Text Post Sat, Aug. 17, 2013 2 notes

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.

Text Post Mon, Mar. 04, 2013 8 notes

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.

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.

Text Post Sat, Dec. 01, 2012 2 notes

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.

Photo Post Wed, May. 30, 2012 26 notes


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.

Text Post Mon, Mar. 26, 2012 1 note

Numbing meds have long since worn off.

And sure enough pain level has hit 8 and worn down pain defenses all over my body. So I basically feel like there’s burning hot everywhere except where it’s burning cold. And almost too intense to write (or read) coherent sentences. I ~love~ nerve block day.

Text Post Wed, Feb. 22, 2012 1 note

Another “is this normal?” post.

Normal for an autistic person, I mean. I’m guessing autism and in particular overload level is what unites the two, but I could be way wrong.

So I’ve always got varying degrees of a kind of pain that could be neuropathy and could be central pain. And right this instant it’s taking the unusual form of burning, evil pinpricks everywhere in my body. (Worse in some areas than other ones.) Not like anything is falling asleep, just lots and lots of pinpricks really close to each other. Which is a somewhat unusual but not unheard of pattern for it to take.

Meanwhile, instead of my usual tinnitus tone, it’s… as if the pinpricks were made into sound. Like a high pitched silvery sizzling static, only with each tiny piece of it — like the pinpricks — audible yet rapid.

So I basically both feel and hear pinpricks everywhere, except of course they’re in the form of that horrific burning that most people with nerve or central pain are probably well aware of by now. It’s really unpleasant and distracting to put it mildly.

Has anyone had a remotely similar experience in terms of a type of pain matching a type of tinnitus? I guess it could be synesthesia but something tells me that’s very much the wrong answer, given that this is not normal. Okay, the fact that the sound is silver is synesthesia but I mean besides that, I doubt it.

Text Post Tue, Dec. 13, 2011 4 notes

Never sure how to take this

People at the pain clinic constantly praise me (either directly to me or in commentary to each other) for getting through facial/cervical nerve blocks without doing more than, at the very most, the occasional squeak. (“Men are the biggest babies about it,” one of them told me in September. As if having a body not designed for the pain of childbirth is a personal failing.)

This is a very mixed message when:

* I’ve almost died a bunch of times because I don’t always show pain. (I told the men/babies nurse this and she said “If that happens why don’t you just tell people something hurts?” If someone is that clueless no response suffices.)

* In addition to the other reasons, one reason I don’t react to this level of pain is because I had untreated, severe chronic pain for over 20 years. Hell, often the pain the nerve block is treating hurts worse than the nerve block itself. (Although after the block my overall pain levels climb for a couple weeks before dropping.)

* And another of the many reasons is that I know what ten is. See The Comparative Pain Scale for details if you’re not familiar with it.

(That pain scale is excellent. I only ever read the scale that’s in the colored HTML table, though. Because some of their other info pisses me off — like that it’s good for friends to discourage us from acting like we are in pain. WTF. But the pain scale itself is the only one that ever made sense to me, it beats the crap out of those smiley face ones.)

Text Post Sat, Dec. 03, 2011 18 notes

This is what it’s like when nerves scream.

And there’s thoughts and I can’t write them. Organized even have words but not able to type them.

And nerves. Screaming. Only writing by momentum. Everything in me wants to grind to a halt but still hurtling downhill.