Tew's Day

Administration
Hello to new readers fastfwd and puchuupoet!

Medical
Brain drugs: Haven't taken them yet today, as I need my focus to drive to the neurologist. Yes, I finally have an appointment, and I will be pressing for a new medication!

Fibro: Bad pain days. I see my primary care doc tomorrow, and I'll ask her about upping the Cymbalta to a normal-person-sized dose or trying something else.

Daily Science
Grand Rounds, a medblog carnival.

Sea spiders!

Daily BPAL
( Roadhouse, Faustus, Gaueko, Cathose )

pixelmonster, you totally need to smell Cathode when you come over to stick 50 needles in my back. (Next week for that, maybe?)

(no subject)

Hey, check it out! My neurologist's waiting room has wifi! Which rocks, because they always keep me waiting for an hour-plus.

Yes, I brought my laptop. So I could work on editing the epilepsy book, that's why. Can you think of a better setting?

Just got called in and weighed - 95 pounds. Dammit. Dammit. Dammit. Losing again.

Nurse: "Are you in any pain today?"

Me: "Yes, but it's not neurological."

Nurse: *questioning look*

Me: "Fibromyalgia."

Nurse: "Oh! Me too."

She doesn't take anything for it; just takes lots of hot baths. After leaving me along in this room, she poked her head back in and said "We're gonna be all right," to which I replied, "Yes, we are."

We are.

But dammit, that weight loss. Going to try not to focus on it, as it's not what I need to be addressing today. My primary care doc and I will deal with it tomorrow.

(no subject)

Hi.

Someone please say "'song, you are not going to have brain surgery," please. I need that now. Or I'm going to cry or vomit.

Will post more in a minute.

*breathing and eating french fries*

Okay. So.

Won't do a full play-by-play. But.

She won't take me off the fucking Trileptal - but she will lower it to 300mgAM/300mgPM, and supplement it with Lyrica, building up 50mgAM/50mgPM per week till we get to 300mgAM/300mgPM.

That would be the good news.

(Me: "I just want to reiterate, for the record, that I do not plan to have more children, so I would like you to consider Depakote and some of the other older drugs as options."
Her: "Definitely don't want more kids?"
Me: "Absolutely."
Her: "What are you doing to about that?"
Me: "Using condoms with spermicide."
Her: *tells me about the failure rate*
Me: *nods*
Her: *tells me that even Depo + The Pill has a failure rate*
Me: *thinks "Okay, so *nothing* is good enough, huh?"*)

So here we go...

She wants me to come in for a five- or six-day video monitoring session. In the hospital.

My first stunned response: "I can't do that right now. Not until at least September." This is Adam's single busiest month - he can't spend a week going in way late and coming home way early to manage Elayna. He just can't.

It's okay. There's usually a monthlong wait. Okay.

What is this test, and why am I having it?

* I go into the hospital.
* They crash me off all my meds in order to provoke seizures.
* They video-monitor the seizures to see exactly what's happening in my brain.

Okay, step three sounds interesting, but step two freaks me out. Let's remember that seizures can be terrifying, okay? Okay.

And why are we doing this lovely thing?

So we can explore "other options", since my body isn't handling meds.

Other options.

You know what "other options" are?

Other options = hacksawing away at my skull and slicing into my brainmeats. NO. My brainmeats. You can't have any. Mama forbids.

Slicing. Up. My brain.

Now, dude. We - and I don't mean us on LJ, I mean everyone, including neurosurgeons - we do not know how the brain works. We know a lot. But we don't know everything. The video monitoring is to pinpoint my seizure focus so they can cut it out of my brain.

But what else is in and around my seizure focus? What else can they permanently damage or outright take away?

The left temporal lobe is memory, is language.

Somewhere in my left temporal lobe is Shayara. Places You Haunt.

Somewhere in my left temporal lobe lives story.

I am not having brain surgery. Death first. That's not hyperbole. I would rather die than lose Shayara.

So! I'm having a cosmically shitty day. You?

(no subject)

*slaps hands down on table* Okay. Here's what's gonna happen.

1. I have an appointment with my primary care doctor tomorrow. I'm going to go over this with her and get her advice.

2. Unless my primary care doc has good advice that points elsewhere, I am writing to the neurology department with a list of complaints and requesting a new doctor.

I will not, under any circumstances, have brain surgery.

I will not get my tubes tied. I'm not saying never-ever. What I'm saying is this:

I should not have to get STERILIZED in order to get adequate medical treatment.
Thus, I will not.

I have a lot of tangly feelings about my fertility and motherhood. The two most important ones are that above, and this: next year, or the year after, or the year after that, they may come out with a new anti-seizure medication that has side effects I can live with and has a very low chance of birth defects. If that happens, Adam and I might like to have another child.

I will not permanently sacrifice my ability to have another child in a burst of shortsightedness. The fact that I currently cannot carry a child to term or take care of a baby does not = permanently, as it is completely due to a drug that I am taking. A new drug could change all of that in the span of two, three months.

I hope that that makes this clear. I get the well-meaning advice of "you should get your tubes tied because of the drugs/so you can try other drugs" fairly often; I know it's well-meant, but - I will not permanently sacrifice part of myself for a potentially-fleeting reason.

*sigh* Naptime now, maybe.

EDIT: And I really appreciate y'all's comments, but I don't feel up to a conversation about any of today's crap right now, so my lack of response isn't you, it's me. Thank you, and I do value your input. I'm just short-circuited.

ALSO EDIT: And this? *gestures down at all of today's post* This is why I hate going to the neurologist.

Scattered post

Okay.
avivasedai, via phone: "How are you doing?"
Me: "I'm okay."
avivasedai: "In this context, okay means...?"
Me, after a moment of thought: "...tolerable pain levels, and not being actively homicidal?"

"And it's laaaaarge..."
Me to Adam, regarding the size of the new pill bottle (Lyrica): "I've taken cocks smaller than this."

Cookies
E-mail avivasedai AT gmail.com for my address, should you wish to send cookies. (Yes, several people asked, via comment, e-mail, and phone. Crazy peoples.) I dislike nuts. (Insert testicle joke here.) And am allergic to buttermilk. I am also allergic to horseradish, soy protein, shrimp, medical adhesive, and cardboard, but I find those are unlikely cookie ingredients. As demonstrated recently in a rafaela post, I will totally become an oppressive tool of the patriarchy for pumpkin chocolate chip cookies.

Tomorrow
I shall respond to stuff tomorrow, and try to get back on track with other stuff tomorrow as well. And tomorrow = the beginning of Gwyn's stay! Yay!

EDIT: Since I always get edgy over getting something-for-nothing, I will write haiku regarding each type of cookie I receive. And pictures may be posted.

(And yes, I'm working on the Blogathon incentive thingies.)