Tew's Day

Administration
Happy birthday to daenarys!

Hello to new reader paradoxicalme!

Medical
Standby.
Still haven't heard from my neuro's office; will call after my walk.

Boston
I can now confirm unfiltered that I will be in Boston for a week in the near-ish future. Exact dates should be decided today or tomorrow, but will veer sometime between Elayna's departure for summer camp (May 28) and our departure for Father's Day weekend (June 16); I anticipate that I'll be there sooner rather than later, since the hotels we're looking at for me are booked later.

Since I'll be there for longer than a weekend, I'm probably not going to have my usual One Big Party. Since I will be able to have individual/small-group lunches and whatnot without microscheduling myself into oblivion. If there's demand for a One Big Party, I'm not opposed - but indivdual/small-group stuff wears me out less.

Which is also part of why I'm excited to be staying longer, travel wears me out, and with only a weekend, by the time I fully recover, I'm packing to go home.

As soon as I have confirmed travel dates, I... oh, hell, I will pretty much have a signup street. *laugh*

Mochi!
One of the hotels under consideration is in Harvard Square. I've been to Harvard Square. What I remember about marvelous historic Harvard Square with all of its marvelous historic stuff is this:

I can get mochi there. Specifically? Mochi ice cream.

This resulted in me spending a not-inconsiderable chunk of time yesterday singing and dancing about the mochi.

"I am going to have mochi...
Mochi every day!
And I will have mochi for you...
And mochi for Elayna...
And mochi for Max and Jack...
Mochi mochi every day!
And I will have mochi for Spooky, and mochi for Kires,
(but not mochi for the Craftsman, because he will be in Boston and can eat his own mochi,)
And and and mochi for my parents, and mochi..."

Adam: "How many mochis is that?"

Me: "Many many mochi."

Mochi.

...I go now.

Because Monkey's doing it...

Today is Ask Me Anything day. Go for it.

Actually, I'll screen comments in case you want to ask me something non-public-like. I will be unscreening comments as I answer, so tell me if you want your comment left screened!

Also, I may voicepost the Mochi Song later. It's actually more of a Mochi Chant. But. Yes. I was pretty much flat on my ass all day yesterday, so I'm a bit restless today.

By the way...

...since there are so freakin' many of you, and I don't want to mess my wrist up today: Please accept this post as a thank-you to all of you who are offering/have offered crashspace, hotel info, and cell phone advice! You are tremendously helpful people. :)

Set phasers on random!

* Taleggio cheese truffles are crumbly! Unexpected, that. Good, though.

* Teasing cute boys on AIM is fun.

* The new Charles de Lint book is out today! Widdershins. The long-awaited Jilly + Geordie book. I am desperate for it, and I want to run out right now and get it - but I have an Amazon gift certificate, so I should not waste money. I should use the certificate. Being a grownup sucks.

* <--- is Jilly Coppercorn

* Anyone who talks to me today is having to hear me say "mochi" a lot. It is just a delightful word, on top of being a delightful substance. Mochi!

Oh no you didn't.

(Yes, I know I'm Posty McPostalot today. I'll be better tomorrow. I just am not going to sit on this one.)

Link via fiannaharpar:

New federal guidelines ask all females capable of conceiving a baby to treat themselves -- and to be treated by the health care system -- as pre-pregnant, regardless of whether they plan to get pregnant anytime soon.

Pre-pregnant.

Now, the article goes on to make the following recommendations: "...all women between first menstrual period and menopause should take folic acid supplements, refrain from smoking, maintain a healthy weight and keep chronic conditions such as asthma and diabetes under control." And, y'know, I'm for that. In that I just generally think that diabetics ought to keep an eye on the diabetes so they don't end up having to get limbs amputated. I think that's a common sense thing.

But the words "federal guidelines" and "pre-pregnant" are not just sending up red flags, they're sending out a fireworks show and a marching band.

I have been unable to obtain adequate medical care for my epilepsy because I am what they'd call pre-pregnant. As my neurologist puts it, I am a woman of child-bearing age. As such, they flat-out refuse to try me on any medicines other than the ones proven least likely to affect a fetus (read: the ones that are paying off my neurologist). Despite the fact that I have declared my belly a no-fetus zone.

My neurologist does not trust me to not get pregnant. My neurologist puts a potential fetus's potential health over my health.

And now the government wants to officially sanction that.

Oh HELL no.

I should not have to get my fucking tubes tied in order to not have seizures and/or get medication that at least doesn't have me dropping weight. (90.5 on the Craftsman's bathroom scale; even taking into account that it's a different scale from my doctor's, it's a significant enough difference that I have to look at it. I'm 89 on my scale right now. Which slips, but - still.) To get off a medication that's caused what's essentially a whole-body crash.

Pre-pregnant? Hell no. I am post-pregnant by 11 years. Pregnancy and me do not belong in the same sentence.

Screw that noise.

EDIT: When I first posted this, I was writing just for myself and my friendslist, so I didn't put in a whole lot of background. Now this post has been linked all over LJ and in DailyKos. So. Background for people who have not been reading me since the dawn of time, quick-and-dirty version: I was diagnosed with epilepsy in October 2003. My first neurologist put me on Lamictal, which caused some pretty untenable side effects, including the first 2/3 of what became a catastrophic weight loss - 50 pounds in total, to a low of 85 pounds.

She tried me on Keppra, which was worse - then gave up for the sake of the potential fetus. I switched neurologists and medications, trying Topomax and Trileptal, the latter of which (plus Zonegran) I'm still on. The weight loss continued. Uncontrollably.

There are medications that have, as their side effects, weight gain. I have begged for these medications, but been refused. Direct quote from my neurologist: "You're a newlywed. You'll want a baby." I'm a newlywed with an 11-year-old daughter and a body that's falling apart. Trust me. I do not want a baby. But my stated desires are irrelevant - I cannot get prescribed a medication that will keep me from losing weight and may control my seizures better than the one I'm on now, due entirely to increased risk of birth defects.

If you want any further information, feel free to ask; I'm not shy.

Monty Python and the Interesting Parenting Techniques

Elayna: "You can have the rest of the pretzels if you want."
Me: "No, dude, I totally gorged myself just now. Can't eat another bite."
Elayna: "What's gorging?"
Me: "When you eat and eat until you are soooo full. Full up to here." *gesturing at esophagus*
Elayna: "So you can't eat even., like, a raspberry?"
Me: "Even a wafer-thin mint."
Elayna: "A what?"

I discovered that we do not own Meaning of Life. Zut alors! Fortunately, much as YouTube annoys the crap out of me, it's a great resource for stuff like this. So now Elayna has seen...

* The Mr. Creosote sketch
* The Dead Parrot sketch
* The Lumberjack Song, and
* The Argument Clinic sketch.

And now she has to do some homework. "That was never five minutes!", she says...