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Mon, Aug. 6th, 2012, 12:43 am
Slowtime Check-In Day 10 of 14 (Sunday): Gettin' Shakey With It

Finished off the list of errands with AgtOrange. We visited Container Store, where I was once again frustrated by a lack of suitable spice system options. My spice system will surely be the death of me. After taking most of a year to find jars I will tolerate, I still have the problem of the leftover spice. It mostly comes in flattened envelopes, so we independently came up with the idea of a sealing accordion file. The only case-like accordion file they had was clear on the outside and garish neon colors inside -- a total affront to my eyeballs. And even if most of the spices can be filed like paperwork, there's the problem of the medicinal herbs which come wrapped in plastic sandwich baggies. Theoretically one could argue against a system which puts the two together, but there is a great bit of overlap. I make a delicious thyme cough syrup.

Short of breaking down and getting an antique Chinese apothecary chest, which would be ultra-cool if not entirely practical, I thought up a bulky but interesting solution -- VHS cases. You can get them cheap (potentially free through freecycle), they protect the herbs & spices, seal fairly well to help lock in the smell, are easily labeled, and there are still a variety of DVD/VHS media storage options so I can change the arrangement later if I so choose. My biggest problem is one of space. If I get back into herbal medicine, I'm estimating that between kitchen spices and medicinal ones I will amass fifty to a hundred different herbs. That's pretty much an extra wall unit, and I've just barely figured out where to stuff the DVDs. Of course, it will be mad cool explaining to people that, no, they are not in fact movies, but herbal medicines. I'm considering getting totally meta about it, because you can buy modern versions of the apothecary cabinet that are actually designed to hold media, even VHS tapes.

So basically, I'll have an apothecary-style cabinet, and when you open it you see VHS cases... filled with apothecary herbs. Can I say 'righteous'?

We finally bought the new mattress and boxspring today. For once I didn't automatically pick the most expensive thing in the store. I did, however, initially pick the one that had been discontinued and was no longer in stock. My second option was actually the cheap mattress; I hate memory foam. Since I'm the one who will be putting the bed frame together (of the two of us, I am the handy one when it comes to furniture assembly) and since I can't do anything while I recover from surgery, we won't be getting the new stuff for another week. Despite having spent over a grand today, I don't feel like I've properly shopped. I mean, a bed doesn't count, especially as we've been planning to get a new one for months.

After lunch, my body kept telling me I was hungry even with a full belly. Thinking it was dehydration, I downed a bottle of water. When that didn't work, I figured it was my medication (which can make you feel hungry when you aren't) and ate a couple of pieces of dark chocolate. AgtOrange suggested I lay down and snuggle with him, and if I was still hungry in a bit he'd fix me something to eat. Big mistake.

I drifted off to sleep and he went into his office, only for me to wake up feeling like my body had been wrapped in cotton balls, soaked in ether, and electrocuted. My blood sugar had tanked. Calling out his name yielded no results and I didn't think I could move. My bladder felt like it was ready to burst. Even though we only needed the bed another week, ruining the mattress that way was not high on my to-do list. I started to crawl from the bed when the shakes hit me.

Non-epileptic seizures, what most doctors still call "pseudo-seizures". Most medical professionals still say they are 'imaginary' or faked somehow, but my therapist has had many patients with this disorder.

"There's a lot of things we still don't know. Eventually they are going to find that there is a neurological component to them." (paraphrasing my therapist)

I don't make them up. I never had them before I tried to kill myself with Wellbutrin as a teenager, which has been known to cause seizure-like activity in high doses. Like a real seizure, I am more prone to getting them upon falling asleep or waking up. Certain things trigger them, like sympathomimetic drugs, specifically albuterol and epinephrine. One time, a dentist accidentally injected me with lidocaine that had epinephrine, and moments later I had the shakes so bad they had to hold me down while the tech put cold cloths on my head. They almost called an ambulance. If I were making these things up, it would not have happened because I didn't know there was epinephrine in the injection; my chart specifically states I can't have it and this had never happened before.

The other thing that triggers them is low blood sugar. I have reactive hypoglycemia, which is a problem in your body's regulation of insulin. Basically, if I eat a ton of sugar, my body overreacts and pumps out too much insulin. The more sugar I eat, the lower my blood sugar drops. Sometimes this also happens after a night out drinking. Try waking up in the middle of the night with a hangover and a seizure and you have a fair idea of what hell is like.

My condition is diet controlled, but today I stupidly wasn't paying attention to my diet. I started this morning with my coffee and pastry as usual. A handful of Cheetos when I walked out the door. Before lunch I remembered I hadn't practiced my vegetarian day yesterday, so I got a veggie sandwich and a chai latte loaded with sugar instead of something meat-based like normal. When I practice my vegetarian day (Saturdays), I don't eat any sugar or drink anything but water. This keeps my blood sugar levels from spiking and tanking. I just wasn't thinking about it; I couldn't tell you why not. So what would have been a healthy meal nearly killed me with self-neglect. I was hungry because my blood sugar was falling rapidly, and a couple pieces of chocolate pretty much sealed the deal. I didn't so much fall asleep as pass into sugar-coma.

My hypoglycemia isn't bad enough to be considered potentially fatal. Usually after a sugar-induced 'nap' I just wake up feeling like fried shit. Today I rolled over, barely able to move, and had partially slithered from the bed when the shakes hit me hard. Thank goodness our bed is by the kitchen, because I was going for the soy milk.

For the record, milk is a better option than sugar if someone's blood sugar is low, especially if they are hypoglycemic (reactive or otherwise); it doesn't create the nasty sugar spike. The reason they say I don't have true seizures is because I'm still conscious, and sometimes I can still function to a degree. When it is really bad, I'm conscious but can't make my body do what I want so I can't answer or move, but I still hear people talking to me. It also hurts like hell, like a painful electric jolt, sort of like getting hit with an electric fly swatter or being hooked up to a stim machine on high... but in every muscle of your body all at once.

I got to the milk; it wasn't bad yet. Theoretically, it would have been safer for me to stay in the bed, but there was a fifty-fifty shot I would have pissed myself in doing so. I think it was my head banging repetitively against the kitchen cabinet that brought AgtOrange from his office with a 'WHAT'S WRONG?! I just left you a minute ago and you were fine!' The milk was already starting to work its magic, which was great because my foot had cramped and I couldn't uncurl my toes to fix it. He fed me peanut butter from the jar before he'd let me go to the bathroom on my own.

So here we are, with not much done today and a pretty close call. I was hitting up against the fridge and cabinet pretty hard. I had a co-worker die like that, she had a seizure on the toilet and, while thrashing, smashed her head into the base of the bowl so hard it killed her. Good thing I have a tough noggin; the back of my head is still a little sore.

Comprehensive List of Tasks

  • grooming & wound care = no
  • eat healthy meal = I have no idea what to put down here. Technically, I did eat a healthy meal, but it damn near killed me so I can't exactly give myself points for that.
  • Spanish = no
  • coping = yes
  • paperwork/emails = yes
  • Movie review = no
  • fun reading = yes
  • meditation = no

Medication = yes
Sober (no drinking/drugs/cutting) = yes
No Compulsions = Despite having spent so much money today, I feel like I managed to control my compulsiveness, which is pretty hard in the Container Store.
No Strenuous Acts = I did perform a strenuous act but not by choice, so success.
Plenty of Fluids = yes

TOTAL SCORE = 8/15 = 53%

Today's Revelations

It's the little things that will trip you up. One can't be hyper-vigilant all the time. I still don't know what brain-fart possessed me to think, "oh, I'll have a healthy veggie sandwich with an apple and doesn't the chai latte sound good?" I know I shouldn't be mad at myself, but I am, and I'm also terribly pissed off at a slew of medical professionals who have told me to stop acting out. These things HURT. What would possess a person to shake so bad they beat their head into a cabinet? Hell, I can't even duplicate the shaking to show people what I'm talking about. It's like caffeine shakes -- try showing someone what they look like without drinking any caffeine. You can't, really.

And when I do have them, I feel ashamed. Not just embarrassed, because they are pretty embarrassing, but ashamed. Years of doctors and medical professionals telling me I was 'acting out' or 'faking' has led me to believe that somehow I make them happen. And what's worse is it isn't entirely untrue, because like a real seizure extreme stress can make them occur. I've known epileptics who can literally 'think themselves into a seizure', a real full-blown seizure recognized as legit by every doctor the world over. And when I do tell doctors that I can't have albuterol or epinephrine because it gives me non-epileptic seizures, they give me that sly 'nod and smile' like 'okay, we are going to humor the crazy girl so she doesn't act up'.

That pisses me off royally. No one should make you feel ashamed for something you can't control.

Even if somehow it was just 'me being crazy' so the fuck what? I still can't stop it; I still can't control it, so why do you have to go out of your way to make me feel bad about it? I'm not doing it for attention, and if there WAS someone willing to physically hurt themselves for attention I would think a medical professional should be compassionate enough to want to give it. But they aren't.

When I was still on Wellbutrin I sometimes got stuck in this repetitive motion, very similar to what I've later encountered with people who have partial seizures. I'd scrape the skin right off my body because I was repeatedly rubbing my hand on my arm back and forth and neither feel it nor be able to stop it. It was like being in a hole, where you are vaguely aware you are doing something odd, if you are thinking at all. It stopped soon after I stopped taking the drug. There are patches on my arm where no hair grows anymore because I took the skin right off as a teen -- literally peeled off my own skin without being on any kind of pain numbing drug. Who the fuck would do that for attention?

These days I do sometimes still scratch at myself, when I'm having a flashback, but that's because I can feel things crawling all over me (that is not a pleasant memory, by the way, and I'm not going to go into it now) or I'm in a not very pleasant rape flashback and I'm trying to get someone off of me; like I can feel the skin-to-skin contact even when no one is there. But even though the end result is similar, it's not the same in my head at all. In fact, I can't really recall what WAS in my head in those long ago moments; they were quite possibly real partial seizures induced by the stupid medication. In that hospital, they used to tape foam mitts over my hands (like boxing gloves) and let me have at it, and then I'd come to with my hands all taped down and them treating me like I was a joke. It's amazing how angry I still am about that.

MANTRA POEM
One day, I will learn forgiveness.
I will look upon the years like drifting sands,
drifting leaves,
I will gather my compassion in my arms
and release it to the past.

Those faces taunting, I will forgive them,
their ignorance.
I will shine the light of love upon them,
and with my forgiveness,
and with my compassion,
I will lift the veil of darkness from them.

They will see.
They will grown into the light.
They will grow to know me.

And they won't be laughing.
-- Jade Lauron


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