More of the pictures of me at different pain levels. This would be a mid four to mid five I think. Somewhere in there. Mild to moderate pain. I’m not sure exactly how much pain I’m in, but I know it’s much less by far than in those old pictures when the plastic fins on my feeding tube were still jammed into my guts.

I am very sleepy in this picture though, so if you see anything odd it might be that. I’ve been having trouble keeping my eyes open.

Oh and the clock behind me isn’t accurate. It’s been stuck at one time for ages and nobody fixes it.

Yayyyyyyyy finally got lyrica into me.

It had been over twenty four hours.

Of course I now realize I’m going to have escalating pain even long beyond now, until my blood levels of lyrica and trileptal stabilize back to normal.

Tonight is going to suck ass.

Both that, and the fact that I’ve had no acid reducers since yesterday and can’t hope to get any until late in the morning tomorrow when a staff person can swing by the hospital pharmacy.

Which leaves me at higher risk of a nasty aspiration tonight.

Which means I’m going to be chugging Mylanta as a substitute to at least take the pain down.

Because heartburn plus neuropathy, both enhanced by lack of meds? Hell on earth. Heartburn is heartburn, then neuropathy creates a giant halo of pain around it on both my stomach and my back.

I was so busy controlling nausea at the hospital, that I couldn’t even afford the luxury of thinking about pain, nor tolerate the only pain meds that work in an IV, but the moment I got home I felt it all over my body everywhere from head to toe, and will likely continue it until my body goes back to normal.

Then of course there’s the issue of whether I managed to miss enough seizure meds to cause seizures as well as out of control pain.

This is why I hate the ER.

But if I’d had to stay till Monday my pain would have gone even further out of control. There’s no IV equivalent to Lyrica, and the only meds they can give IV are terrible at neuropathic pain. It pisses me off that of all the seizure meds that control pain, they haven’t made a single one except Dilantin into IV form, and Dilantin is not the nicest pain med to other body parts.

Meanwhile there’s not even a liquid form of Lyrica, so it’s likely the medication that ended up progressively clogging my tube a little more each day they gave it to me. Which is what probably happened. They’re going to have me flush my tube with coke several times a day to keep the Lyrica from building up inside the tube. I had heard of Coke for getting rid of clogs after they form, but apparently if you do it all the time it clears out the tube before they have a chance to really grit onto the outside.

They said it looked like the clog had formed by thin layers building up over time until it completely clogged over. My guess is it was mostly Lyrica and leaving the feeding formula in until it had a chance to harden this morning was the last straw. So it wasn’t a kink but it was so thick it acted like one.

But I’ve got a new tube. And I had such a good anesthesiologist I didn’t even know they’d started the procedure until it was over. Apparently my threat of staying the weekend — which they didn’t want, in a big way — unless they could find me an anesthesiologist, paid off. They found me one, he used propofol, and I remember nothing of the procedure. Just starting to fog out a bit, then fogging back to normal, panicking and trying to tell them not to start the procedure, only to be told the procedure was already through.

I was glad when they finally told me that because my hands were restrained during the procedure and I was completely wigging out until they realized I thought they hadn’t started. I had thought they were holding my hands down and were going to do the procedure with my hands held down like last time. But it was really just some fairly gentle wrist restraints they probably used to keep me from grabbing the doctor if I woke up suddenly while they were still working.

But fuck. Pain. This is going to be a long night. But totally worth it, as far as being able to be home. And totally worth having a good anesthesiologist. He also told me he wouldn’t do what the previous ones did — lie to me and say I wouldn’t remember, or that I wouldn’t feel anything, because nobody can promise that ever with any kind of anesthesia. I thought this meant he’d be giving me the same kind of crap anesthesia. But it really meant that he was far more trustworthy than the nurse anesthetist they used before who was making all sorts of ridiculous claims to that effect, while I was screaming in pain. (“just a little more,” “you won’t remember this later”, “you’ll be asleep any second!”)

Oh and apparently the screaming, according to the anesthesiologist, means they also lied about giving me the meds until they started suppressing my breathing. Because if they’d been doing that, I wouldn’t have been screaming my head off.

This is the interventional radiology room that now terrifies me. Like I went in there and immediately started panicking. I didn’t expect to have that reaction. But it’s where they put in my feeding tube with a major anesthetic malfunction. So I felt the entire surgery and it was horribly painful. And so I apparently now am scared of the room it happened in, even though I didn’t expect to have that reaction at all. I couldn’t control myself I just started freaking out. Hopefully that will stop happening if I have to keep going in there. But this time I was there, what they did to adjust the tube was painful enough to make me cry. Because it had pulled out and part of it got embedded between my guts and my skin and that was what brought my pain up to a nine the other night. And when they pushed it back in, it hurt like hell. So I hope this room isn’t going to become permanently traumatic or something.

I’m home.

They found something wrong with the tube. They fixed it. I feel terrible but I think probably better than I’d feel if they hadn’t fixed it. I’m exhausted and nauseated and in pain. The tube had slipped slightly and something was like.. In there between the skin and the stomach or… Something. I was too out of it when they explained, to fully understand, and they wouldn’t explain it more than twice. I’ll post more when I feel better. I feel terrible. Not sure how much of the terrible is nausea how much is pain how much is exhaustion how much is stress — there was a clusterfuck with a staff person too. Ugh. Anyway. Writing this so people know. Oh and also I had a PTSD-like reaction to the very sight of the interventional radiology room, the same room where they put in the tube without adequate anesthesia. The moment I got in I started panicking.

More attempts to capture and document what different levels of pain look like on me. This is either high seven or low or mid eight. And yet again documenting my appearance at least makes me feel better psychologically, because it gives at least some reason for the pain, like “I can use this to document what it looks like” rather than “This is totally pointless pain that has no purpose” even though the second is technically kind of true.

I’m still at the emergency room, the doctor said they are going to do a study to make sure the tube hasn’t slipped around, and as long as it hasn’t they will just maybe give me more Tylenol or something. I’m now waiting for her to consult with another doctor and then get the study started.

This is somewhere between a mid seven and low eight, not quite sure where. The pain is shifting around a bit as I lie here in one spot trying hard not to move anything near the incision. I can feel either my intestines or gas or something moving around in there. Gah I hope this stops soon and hope it’s not caused by anything bad.

This is an eight. Pretty much dead center not close to a nine not close to a seven.

It gives me a tiny bit of satisfaction that at least something good is resulting from all this pain — being able to take pictures to document what it looks like on me, that is. That makes something unbearable a tiny bit more bearable. Because otherwise this is awful and seems pointless and WTF.

I worry when I’m in this much pain that something must be wrong with the tube, but my doctor said there probably isn’t anything wrong. I hope he’s right. The other thing that makes the pain worth it, is that the tube exists in the first place. That makes this a little more tolerable too. Because I need the tube, and the tube is important, and that’s worth a lot of pain because its keeping me alive and that’s a good thing.

I just hope I start recovering from this soon because its utterly horrible. I suspect there’s some combination of the incision pain and the rubbing of the tube on the incision and gas pain and bloating and stuff all combining to be utterly and totally horrible.

For further reference. This is how I look with pain just barely barely below nine. It was nine a minute ago, I repositioned a bit and it dropped to just barely below. It was so much that I was scared of it. It was so much I almost didn’t make it from the bathroom back to bed. I had to drain my g tube, and then remember that standing didn’t actually make it worse. Before I drained the g tube it was outright impossible to stand. After it was barely possible.

This is a problem, the way I look in this picture, because anyone who knows me can see it plain as day, but people unfamiliar with me, unfamiliar with people like me, just see a blank face. I’m glad I’m documenting this stuff because it may become useful some day, despite the fact that experiencing the pain necessary to document this stuff is hell on earth.

It’s rare that I find pain that I can’t breathe and push myself through, but I found it a few minutes ago. I feel utterly terrible. Can’t even describe it. I think it’s some combination of gas, and my stomach and intestines moving around the hole and irritating the hell out of it. Right now this is an eight, its gone down since I started writing but just barely.

(There’s a lot of territory inside eight. When I started writing I was at close to the highest eight possible. Right now I’m “merely” at a high eight, mid to low end of high. I don’t know how I come up with these numbers, but I’ve spent ages and ages and ages training myself on the pain scale and this is what I can say. At the hospital they’d give me pain meds and they’d try to claim my pain hadn’t changed at all if I gave them the same number twice, so I had to start telling them low medium and high for each number just so they would believe me when I said things they were doing for pain were actually working.)

So when I took the picture I was pretty much on the border of eight and nine. I’d call nine enough pain to start experiencing severe disorientation or even unambiguous delirium. It’s possible to experience those things within eight too, it just depends on the “flavor” of eight.

My doctor told me there’s probably nothing actually wrong with me. As in nothing to cause medical worry. But it’s hard not to be concerned about something going badly wrong when your pain is so bad you can’t make yourself move.

I hate that most people can’t see actual pain when my face looks like this. To me it’s obvious. Just as obvious as it was on feliscorvus’s cat Coraline when she got surgery, not possible to point out exactly what part of her body and face showed it, but it was possible to see everywhere on her. Unfortunately a lot of people who have only seen pain in nondisabled people don’t know what it looks like in people with nonstandard brains.

I’m pretty sure this is how I looked when webmuskie was telling everyone how much pain I was in, and being treated with outright scorn for pointing it out when I didn’t look like a nonautistic person in pain.

The booklet I got from a conference presentation of pain management in people with developmental disabilities said it’s absolutely crucial for anyone with a communication impairment or nonstandard appearance and stuff, to have documentation of what they look and act like at different levels of pain. So when I’m taking pictures this is part of my documentation. It’s also crucial to have people around who know the person and can recognize when they’re in a lot of pain. It’s crucial not to ignore them as people were ignoring webmuskie right after my surgery.

I am not sure, if my pain goes much above this, I’d even be able to take pictures and document everything. But I’m trying to do everything I can, because webmuskie may not always be there, people who know me but can’t always recognize my pain levels may need pictures to guide them, I need all the help I can get.

There are also times when I show pain in exactly the ways anyone else does. Grimacing, shouting, etc. But often what happens is I start looking “more autistic”, my face goes more slack, my eyes go more glassy. I may make unusual sounds, without even knowing I’m making them. Sounds most people never make no matter how they are feeling. And I get more confused and disoriented, although a lot of people can’t tell when I’m confused or disoriented or measure how bad that is in the first place. I may look kind of scared or trapped, although I don’t know how other people can see that either.

I also have internal signs I can read for extreme pain. Things other people can’t see. Like I keep thinking I’m in other places than I’m at. I get flashes of places I’ve never even necessarily seen before. If someone’s giving me an ice pack I may fleetingly think I am lying injured in the snow somewhere. A minute ago I thought I was in a green grassy field, just for a split second. I don’t know where these images come from, they just start kicking in at high eight low nine. Sometimes they are just for a second, sometimes they’re more persistent. It is like my brain glitches out and tries to tell me I’m somewhere else.

Anyway this is about all I can write about this right now. I’m trying, anyway, to document things as they are happening so in the future it will get easier for other people to know the difference.