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Scheherazade in Blue Jeans
freelance alchemist
Oh no you didn't. 
16th-May-2006 01:50 pm
I Hate It Here - Transmet
(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.
Comments 
16th-May-2006 06:10 pm (UTC)
Pre-pregnant? Hell no. I am post-pregnant by 11 years.

But it seems that the moment you gave birth, you became pre-pregnant again, yes? Anyone not pregnant but capable of being so, by their guidelines, must be pre-pregnant, yes?

By that standard, I'm already pre-voting for somebody else.

(Oh, I knew you were teeny, but 90 lbs? How do you walk around on a windy day?!)
16th-May-2006 06:27 pm (UTC)
I got down to 85.

I don't carry umbrellas on windy days. :)

And yes, I am trying Really Hard to put on and maintain weight!
16th-May-2006 06:11 pm (UTC)
OMG!

How much of this may I publically quote on my blog (with credit, of course)?
16th-May-2006 06:25 pm (UTC)
Oh, all of it; it's a public post.
(Deleted comment)
16th-May-2006 06:12 pm (UTC)
If folic acid, gym memberships, personal trainers, stop smoking aids, the various medical appointments/prescriptions/etc were free and easily available/accessible for us pre-pregnant women, I may be able to tolerate this.
18th-May-2006 06:20 am (UTC)
Hear hear! If they're not going to provide the money, they can let me run my body the best way I can.
16th-May-2006 06:13 pm (UTC)
Do what now?

This is how it happens, man. Under the guise of being For Your Own Good. Insidious.
16th-May-2006 06:25 pm (UTC)
That's it. I'm just going to tell all of my healthcare providers that my tubes were tied!

"Pre-pregnant" - what a stupid phrase. By that yardstick, we're all pre-dead.
16th-May-2006 07:42 pm (UTC)
Yes! I love your logic. I'm going to remember this. Thank you!
16th-May-2006 06:43 pm (UTC)
I saw that earlier.. sigh.



Made me sick to read then too.
16th-May-2006 06:43 pm (UTC)
Typical.

In law school all the sexual discrimation suits based on "dangerous" workplace enviroments that restricted women from having those jobs based on baby making, turned out the the men were most likely to become infertile or have damaged sperm from exposures to lead, chemicals and solvents, while the women had less apparent problems.

We don't call it a Nanny State for nothing.
16th-May-2006 06:49 pm (UTC)
We Must Protect The Children!

*gag*

Thank the gods I found a doctor who would give me a tubal when I asked.
16th-May-2006 06:58 pm (UTC)
I'm pretty sure I can get a tubal if I ask (and is it not offensive that they can say no?) - not just with my health issues, but that I have a child, so I won't get the "You'll want to be a mother someday!" argument.

I don't want a tubal, though*, and I shouldn't have to get one in order to get adequate medical care.

(* Adam and I are going to evaluate things when we settle down in Boston and see how my body's doing.)
16th-May-2006 06:57 pm (UTC)
Oh. Dear. Goddess. NO!

Welcome to Giliad, where a womans only and sole purpose is to get pregnant, and everything else is second to that...

gah!

When in hell are you americans gonna wake up, rise up in revolt and throw the bums out!?!
16th-May-2006 08:58 pm (UTC)
[disgustedly] When everybody here gets it through their thick heads that "On, I like *my* representative just fine; it's everybody *else's* representative that's the problem..." keeps us from ever turning out any of the bastards.

(or Congresscritter, or President, or Governor...)

It's time to vote against our current government, in its entirity.
(Deleted comment)
16th-May-2006 06:59 pm (UTC)
Everyday, it seems that we get closer and closer to The Handmaid's Tale.

http://en.wikipedia.org/wiki/The_Handmaid's_Tale
17th-May-2006 02:44 am (UTC)
YES. That was my exact thought when I read this post this afternoon. Especially because I'd just re-read the book...
16th-May-2006 07:08 pm (UTC)
for one, there are actually no "guidelines" basically, this is congress's way to formally accomplish nothing. They are making a formal recomendation to the public, this does not change any existing laws or legaly sanction what your neurologist is doing. What your neurologist is doing is called covering his ass. Basically, should someone want to get pregnant (or god forbid actually get pregnant) on a medication that does detrimentally affect a fetus, he can be held liable, even if he warned them. To give you an idea how crazy medical law suits can be, my grandfather was once sued by a patient that he had never even treated (the person had been treated by someone else at the same hospital as him) and his malpractice insurance chose to settle as upposed to getting it thrown out of court. Not only does that make his malpractice insurance go up, but it goes on his record. Also, its possible that any pregnancy complications they cause could be permanent conditions within the mother. In other words a person that takes the medication may never be able to have children (or atleast not unaffected ones) ever again. As for drug companies paying him off, most don't bother. He'd have to be one of the most popular neurologists in the city for it to be worth their while anyway, it would be cheaper for them to just make a better drug.
16th-May-2006 07:24 pm (UTC)
Drug company payoff comes in more forms than pure bribe money... for instance: free samples, snacks for the staff, golf outings, small gifts, and so on.

There was an article on it in - IIRC - The New Yorker a few months back, and I've actually witnessed all of the aforementioned more than once, from more than one rep.
16th-May-2006 07:18 pm (UTC)
I hope that you don't mind me speaking as a physician here; it's more because physicians are getting malpractice suits because they didn't advise women to be prepared properly for pregnancy. Secondarily, the government is taking this stance to decrease neonatal intensive care use, often due to poor habits on the mother's part prior to conception. Finally, there may be a local bias towards young women getting pregnant often; sort of a Biblical thing. But I suspect lawsuits being the primary reason.

Have you considered getting a tubal ligation? That would shut up your neurologist, once and for all.

16th-May-2006 07:28 pm (UTC)
I never mind you speaking as a physician, hon; I appreciate it. My sensors on "AAAAAGH all doctors are fucking stupid!" probably require recalibration. Just - this and a bunch of other stuff, with me and others.

I've been advised numerous times that Depakote, for example, can cause birth defects. Okay. I feel informed. I use condoms with spermicide, and I have Plan B in my purse. Why can I not have the medication?

I've considered a tubal, but

a) We're not convinced about the No More Kids Ever thing. No More Kids Right Now, certainly - but we're holding out hope that my body will settle sufficiently after some time in Boston and some med experimentation, and there are new drugs being approved all the time - I don't want to have my tubes tied now and have The Solution come around a year from now.

b) I don't want to give up that future just to get adequate medical care. I resent the hell out of that. I shouldn't have to do it.
16th-May-2006 07:27 pm (UTC)
write about this. I bet slate would be a good market. seriously -- draft a pitch? I know the managing editor there and can pass on her email. Slate likes riffing on headlines, and the angle of 'here is a practical impact this has on my life' is a great one.
16th-May-2006 07:29 pm (UTC)
*blink* Sure! Info to shadesong AT gmail.com, please?
16th-May-2006 07:34 pm (UTC)
Linked and seconded.
16th-May-2006 07:34 pm (UTC)
(here from juliansinger) I'm surprised no one has said "find a new neurologist". Admittedly, I have never dealt with neurologists, but in my experience it is possible to find a doctor who isn't an asshole if you shop around.
16th-May-2006 07:37 pm (UTC)
It is, but good specialists often have long waiting lists for new patients, or even appointments for their existing patients.
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