as small as a world and as large as alone

2:33am October 2, 2014

My day today.  They biopsied my arm and my leg, apparently multiple times each.  They had me under pretty good, so I don’t remember most of the procedure, just waking up a few times and saying “owwwwwwww” to let them know it hurt.  

At one point towards the end I woke up to this really weird feeling.  The anesthesiologist had one of his hands gripping the back of my neck from behind, with one finger each on the bones behind my ears, the ones that stick out a little.  It hurt like hell when he did that.  And he kept saying “She’s desatting.”  And I kept passing out.  So I don’t know what that was about.  

I know desatting means my oxygen went low, which is normal for me under anesthesia, especially when certain staff forget to tell certain case managers to bring my bipap with me to any and all things where I might be put under, even when specifically asked to bring the bipap.  

I know they gave me extra dexamethasone before they even started the procedure.

I just don’t get what the neck grip was about.  I’ve never felt a doctor do that before.  I don’t know if he was feeling for something, or trying to hurt me so I’d stay awake, or what.

/

And even after the recovery room they said I was sleeping more than I should’ve been.

I discovered that (as in the last picture) a resident initialed next to my biopsy sites.  I have one site on my leg, one on my arm, on the right side, both.  Actually I’m not sure if that’s initials, or the initials of the muscle in question “right deltoid”?  But no, deltoids are on arms, not legs,  I wonder what the initials on my arm muscle say.

I really hope this shows them something useful because it hurts like fuck.  Like it’s not the worst pain I’ve had in my life, by far not the worst.  But it can get up to a 7, and a 7 is bad enough.  They told me it would hurt as if someone punched me in the arm.  I think the person who told me this has never had a muscle biopsy, or tried to climb stairs with one in their leg. It’s  elevators for me for awhile now.

They also did a weird thing where they prescribed something and then canceled the prescription because I already had something else and it was confusing and it made me have to go all the way back to the hospital for nothing on a bad leg on a grumpy stick day.

Because boy have I been a grumpy stick.  Mostly because of nausea.  Nausea, nausea, nausea, nausea, nausea.  And a couple near aspirations, partly because we didn’t get a chance to do real burping, like serious burping, until tonight.  And I’m not sure how seriously they took my “suction my g-tube during the procedure because when I’m out, I aspirate bile” thing.  They kept saying “You haven’t eaten so you shouldn’t aspirate anything” and I was like “If that solved my problems I’d have a j-tube, not a GJ tube” and had to explain, while already halfway too sedated to think clearly, “My stomach is paralyzed, that means bile builds up and doesn’t go into my intestine, it goes into my esophagus, and from there it goes into my lungs.  Given that I have bronchiectasis, this means instant aspiration pneumonia and possible death.  PLEASE suction my effing g-tube already, and trust me that I know what I’m talkingabout.”

The doctors and nurses were actually mostly very nice and fairly competent, there were just a couple who didn’t seem to understand gastroparesis.  And since gastroparesis is an orphan disease, I can’t expect everyone to understand.

Then there was the resident anesthesiologist.

“What are you giving me?”

“Sedation.”

“No but like what are you giving me for the sedation?”

“SEEE… DAAAAAA… TIONNNNNN.”

“No okay look, I know I’m getting sedation.  There’s different kinds of sedation.  What kinds of drugs am I getting?  Propofol?”

“That’s one drug we could use, yes.”

“Well can we talk about my history with these meds?”

And the guy just didn’t seem to want to give me anything but one-word answers, spoken louder and slower if I didn’t respond the way he liked.

But his boss was great, and had a long talk with me about my history and the possible options, and made sure I was agreeable to any of the options they might have to use.  I don’t know what they used in the end but I know they used lidocaine for local.  If it worked, I didn’t notice, but they said they could only give me a certain amount before it became poisonous, and I agreed that was a good reason to stop it… amazing how reasonable I become when people explain things to me.  They were nervous about propofol because it’s counterinidicated in mitochondrial disase in children, but they didn’t know about adults.  They may have used some combination of Propofol, Versed, and Fentanyl.  They told me they were much more capalbe of fine-tuning my doses of Versed and Fentanyl in the operating room with a full anesthesia team, than they were in the way it was usually done in Interventional Radiology.  I might have sensed a little interdepartmental competitiveness going on… ;-)

I’m also highly curious what it will ook like when the bandages come off.  They apparently sutured it with tape that wil fall off on its own time schedule.  I wish I could have watched the procedure, although that probably would not have done wonders for my stress responses and adrenal insufficiency.  

So now my results are going off to a lab somewhere to be interpreted.  I don’t know how many tests they ordered, but it sounds like they took at least three samples from each biopsy site.  Someone told me not to “wimp out,” to go for as many samples as they could possibly get, because I’d be glad later when I had all the information I possibly get from the samples.

I know they said something about “mitochondrial DNA testing” but that isn’t all they were going to test, and I don’t remember the rest of it.  I hate my memory sometimes.  It’s tied to the movement disorder:  I can’t initiate memory very well on my own, but trigger the memory and it’s more accurate and detailed than the average person’s memory.  Give me the Weschler memory test and I score in the sixties (100 is average, deviations are the sam as on an IQ test… much as I scored 47 on a test of adaptive behavior (the test went from 40 to 135 with 100 being average, and that was .  But I have an excellent memory in areas that they don’t test.  Just as I obviously wasn’t tested on my areas of strength in communication on the ABAS, because I scored lower than the floor threshold.  And I’m a blogger who is famous among certain communities for my writing.  But they only graded me on whether I say things like  "Hello,“ "goodbye,” “thank you,” and other things that, in general conversation, I don’t say.  So, a grade of 1 in communication, which is as low as it goes.  The rest of the test was pretty accurate though.  It was just the communication section that was clearly intending to test “basic communication skills only”, rather than advanced ones.  I have the “advanced” ones without having the “basic” ones, so I tested as low as humanly possible.  

Let that be a lesson in designing tests that are for people with developmental disabilities for crying out loud without autistic people in mind.  To her credit, the tester noticed something amiss.  Not to her credit, she decided my staff might be lying about the way I communicate, or that I must just be “choosing” not to use those words, since I could clearly use other words.  This is a test where they give it to a family member or staff person who knows you well, and have them fill out how often you are able to do each task written on the test.  I am terrible at most of the tasks tested on the test, which is a good thing in a way because it meant I got services quite easily.  But the test clearly did not take into account the fact that ranking skills from “basic” to “advanced” based on a neurotypical model is not going to work for people with developmental disabilities, who are neither neurotypical, nor just people who develop slower but along the same developmental path as neurotypicals.

That was a long tangent.  Meanwhile I have aspirated.   I think it was bad enough to cause an infection.  Luckily it’s my case manager who’s going to be here in a few hours, so I will be able to get the antibiotic ball rolling quickly.

This one was my fault entirely.  Or almost entirely.  I’d been warned by a good friend that my body has been acting like it wants to aspirate.  So I’d been avoiding food.  Then I had to fast for a procedure, and was given extra steroids for the procedure.  This caused me to become so ragingly hungry that I not only ate, but ate more than I allow myself to eat even when I’m being irresponsible and eating.  Then we weren’t able to drain it all out of my g-tube tonight, and I said “I know I’m going to aspirate tonight.”  Sure enough I just woke up with that burning feeling in my lungs, and have spent the last half hour coughing up bile tinged the same color as the food I shouldn’t have eaten.

I feel horrible and stupid and like I should’ve known better.  Especially since I feel like every time I get sick I take attention away from my dad, and I want my dad to be the center of attention while he’s dying.  He just almost passed out at his chemo appointment and they found out his red blood cell count was super low, so they’re keeping him in the hospital for a blood transfusion.  They said there’s a chance he could get blood-borne diseases but that they couldn’t possibly kill him before the cancer would.  That’s a sobering thought.  Anyway if any family are reading this, please don’t spread the word around the family that I’m sick, I want people to concentrate on Ron right now.  Especially since I feel like this was my fault.  

(My doctors will likely insist it was not my fault.  They tell me steroid-induced food cravings are almost irresistable.  But I’d developed a system for handling them, and today I broke that system of rules I’d set for myself, and I feel nothing but ashamed and stupid and unhappy.  The rules were only certain kinds of food and only first thing in the morning, and then burp it out the g-tube right away and don’t stop till it’s all out.  Normally that works.  Today I had kinds of food that don’t come out the g-tube easily, and that was my worst mistake.  So was the sheer quantity.  So even though we spent three hours burping, I knew my stomach wasn’t empty yet and I knew I couldn’t get it empty in time.)

The part that makes me feel the stupidest?  That friend is never ever wrong about my health.  If she says I am in danger of something, I am in danger of it.  If she says not to do something, there’s a damn good reason not to do it.  And I believed her, but for some reason, maybe even (I hope it’s just this) the anesthesia and pain making my cognitive skills scrambled today, I didn’t heed her warning.  Or I did heed her warning, but this one time, I lapsed, and this one time, that’s all it took.  Which means she was right that my body was just looking for an excuse to aspirate.  She can read all kinds of things about my body just by looking at me, and she’s never wrong.  Ever.  Not when she’s so definite about saying something.

Now I just have to hope against hope that I won’t get pneumonia.

But so far, 2 aspirations in 2014 (and 3 in a year if you count Dec. 25th) is still light-years better than I was doing back before the feeding tube. So clearly the feeding tube is doing its job, too.  But I need to do my job, and satisfy my food cravings with gum, not food.  I feel ashamed even talking about this on here.  But I have found out in my gastroparesis support groups that nearly everyone with gastroparesis, feeding tube or not, eats things we’re not supposed to eat on occasion and make ourselves really sick, because it’s not humanly possible to totally turn off the human appetite.  So even if I did something stupid, I’m far from alone among gastroparesis patients, including those of us with tubes, in eating something I shouldn’t have.  (Honestly the only thing I “should” eat is small quantities of yogurt first thing in the morning, if I eat anything at all.  Followed immediately by drainage, leaving just enough in my system to get the probiotic effects of the yogurt.  Which do actually leave my guts feeling better than before I ate it, which is more than I can say for any food on the planet.)

Anyway, I’m ashamed, please don’t make me feel any more ashamed of myself than I already do.  I already feel lousy enough from the combination of shame, guilt, and pain from the biopsy.  I don’t need more piled on top of it in the form of “You deserve this, you brought it on yourself” and stuff.  I’d like to see anyone with a normal appetite – let alone an abnormally large steroid-induced appetite – go for months on end without ever putting one morsel of food in their mouth that they shouldn’t.  Because as far as I can tell from polls on the gastroparesis support groups I’m on, it can’t be done.  And even my doctors tell me no amount of willpower can fully control this, and that only changing my steroid dose (which isn’t an option right now) would do the trick, maybe.

TL;DR:  I got a biopsy of my muscles looking for mitochondrial disease among other things.  Still waiting on the results.  Also aspirated, feel stupid for eating even though I had been fasting and was given lots and lots of extra steroids, which is a recipe for uncontrollable eating.

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