Medical Abortion under Pressure in Ohio

Ohio's Democratic, pro-choice Attorney General, Richard Cordray, is sticking up for a state law that restricts the use of medical abortion (RU-486, aka mifepristone or the "abortion pill") to a narrower window of time than good medical practice currently requires.

According to the Columbus Dispatch, a 2004 Ohio law limits the use of RU-486 to the first seven weeks of pregnancy, while doctors commonly use it up through the ninth week. The original FDA approval covered only the first seven weeks, but subsequent experience with vastly larger numbers of women has shown it to be safe and effective for two weeks beyond that window. Doctors have been prescribing it off-label through the ninth week, in line with current medical knowledge. The Ohio law has never been implemented because Planned Parenthood sued to block it. This week, the Ohio Supreme Court heard arguments on whether the law should be allowed to take effect; the case has not yet been decided.

So what stake does the Ohio AG have in this? The Dispatch reports:

Anne Berry Straight, an attorney in Cordray's office, said she's not asking the court to set medical policy, only to recognize that lawmakers had the right to regulate the drug. ...

Straight pointed out that Ohio lawmakers already have banned the use of anabolic steroids for muscle-building and amphetamines for weight loss.

[Ohio Supreme Court] Justice Terrence O'Donnell said the court shouldn't be put in the position of playing surgeon general for Ohio.

"The court is going to micromanage the practice of medicine if we start getting into managing off-label uses like we're being asked to do (with RU-486)," O'Donnell said.

I'm not sure why either the courts or the legislature are mucking around with the fine points of medical policy! Whatever happened to the notion that doctors and public health experts should be regulating drugs? Neither the legislators nor the justices have the slightest qualifications. Heck, as a historian of medicine, I'm way more qualified than they are! Seriously!

For instance, you only need a dollop of medical knowledge to understand the difference between a medication that the FDA found to be safe and effective (RU-486) and drugs that are notorious for being abused (anabolic steroids and amphetamines). One of these things is not like the other; one of these things doesn't belong! Geez, my legislators need to watch more Sesame Street. (And no, I'm not saying that the FDA's process is perfect. It's often deeply screwed up. In this case, though, the FDA approved RU-486 in spite of intense political pressure to ignore the science.)

None of the statements from the AG's office explain why Cordray believed he had to stick up for the legislature's right to make medical policy. I understand that it's a constitutional issue as well as a matter of women's health, but I cannot fathom why the AG would have a stake in it. I do know that Cordray has publicly supported abortion rights, and I seriously fail to understand why protecting the scope of legislative power would trump his commitment to women's health.

The Science of Being Worried Sick

One of my bugaboos, ever since I learned there was a name for it, is iatrogenic risks: the damage that medicine itself can cause, however inadvertently. A big ole iatrogenic risk made the news recently, as Ivanhoe's medical news wire service reports:

The agonizing wait for breast cancer biopsy results can be harmful to a woman's health. The results of a new study suggests not knowing a diagnosis can lead to stress that may have adverse effects on the immune system.

More than 1.2 million breast biopsies are performed each year in the U.S. -- 80 percent result in non-cancerous findings. In this new study, researchers sought to establish a biochemical marker to assess the physical effects associated with the stress of extended waiting for a final diagnosis. They collected stress hormone [cortisol] samples from 126 women who had just undergone a large core biopsy. Four days later, the scientists learned the stress hormone levels of women with uncertain results were significantly different than women with benign results, but highly similar to women with malignant results.

(The original study is published in Radiology, March 2009, full reference below.)

Any of you who've awaited the results of high-stakes medical tests are probably thinking: Well, duh! The day I got my initial, troubling MRI results, I was in tears for much of the day before I even saw my doctor. I'm pretty sure my cortisol levels stayed sky-high for a several weeks, until I heard that I didn't have MS and that the radiologist who read the scans was probably mostly covering his ass.

So why is there any value in a study like this one? Because even though its findings are glaringly obvious, it points out that most of the women in the study had to wait at least five days for results. The study's authors, Elvira Lang et al., recommend in another well, duh! moment:

It is important to deliver histopathologic results in a timely fashion.

(Source: Elvira V. Lang et al., "Large-Core Breast Biopsy: Abnormal Salivary Cortisol Profiles Associated with Uncertainty of Diagnosis," Radiology 2009;250:631-637.)

Or to put it bluntly, doctors and hospitals need to organize anxiety-producing procedures with the patient's needs in mind, not the organization's. This would be worthwhile even if stress weren't a risk factor for (additional) illness.

By the way, it's not just women who would benefit from faster, healthier, and more humane delivery of test results. Lang et al. cite a larger, better-powered study in which men who underwent prostate biopsy had the most abnormal cortisol levels two weeks after the biopsy, right before they got their results. Like breast biopsies, prostate biopsies are more painful than doctors will generally admit, or so I hear from people who've experienced one or the other procedure. A cancer diagnosis in either case often strikes at a person's identity and sexuality as well as raising fears of mortality. Lang et al. write (again in the full text version):

These authors reported that some of their patients described the waiting period as a nightmare.

That earlier study was published in 1995, and yet people often still wait a week for test results. I'm hoping the new study might make a bigger splash, as breast cancer news tends to attract more media attention.

How long is the waiting period, exactly, before an obvious iatrogenic risk can be diagnosed and treated?

The Perils and Privileges of Invisible Disability

This isn't exactly a LOLtopic, but invisibility of any sort calls for a kitteh - from I Can Has Cheezburger?

Spurred partly by my recent scary health experiences, and partly by posts from Julie at Alas and Daisy at Daisy's Dead Air, I've been thinking about the peculiarities of invisible disability.

About a week into my bizarro neurological adventures, I started to go public with my colleagues and a few students. I realized I wasn't going to be healthy again overnight. It became obvious that I might need some extra support - which I got in abundance.

The first group of colleagues I told were shocked. "But you looked like nothing had changed!" "Nobody could tell that there was anything wrong!" "Really, your lecture was just fine!"

What shocked me, upon reflection, is how gratified I felt to hear this. I had a mild tremor in my lower left lip, and I was convinced I must look like Inspector Dreyfus from the Pink Panther movies. My facial muscles were freakishly tight and I was sure my face resembled a death mask. Brain fog interrupted my ability to string together sentences, and I perceived my own lectures as rank gibberish.

I suppose it's understandable that I was glad to hear that none of this was evident to an outside observer. And yet, I think my reaction also betrays an investment in "normalcy" that I really ought to have shed by now. I've been teaching about disability in women's studies classes for years. My partner has a somewhat visible physical disability. While in grad school, I experienced another invisible, ultimately temporary, but fairly long-lasting disability when I was diagnosed with chronic fatigue syndrome.

What does it take for a gal to get over the ideal of normalcy? Why was passing so important to me?

There's a serious privilege built into invisible disability. While I'm still pretty far from normal (my hand tremor is acting up as I type this), I can choose whether to disclose it to people. I don't have to respond to questions from strangers about what happened to me - something that happened to my partner all the time when he was wearing an arm brace. It's as though any piece of orthopedic equipment makes your body and its history public property. I'm very relieved not to have to defend my personal space and privacy.

Faced with wearing a wrist brace that might help her heal but would call attention to her disability, Daisy explains why she can't quite make herself do it.

It makes me appear vulnerable and calls attention to my age, in a job market in which older workers are getting left behind. I try to look energetic and "happy" on my job, since we are "selling a lifestyle" and all that shit: I feel pressure in the health supplement industry to always appear healthy. Since it's a job in which people are always talking about their health, I am duly questioned about mine, when there are many times (like now) that I'd rather not answer. The overall sentiment seems to be: well, if you know so much about supplements, why are you falling apart? Aging is inevitable and people are in denial about that, as well as in denial about disability-as-part-of-life in general...

I'm not in the health industry, but in my work I'm surrounded by apparently-healthy young people. As their instructor, I often hear about what lies beneath. One person has ADHD, another is coping with rheumatoid arthritis, yet another has Crohn's disease, someone else comes down with mono, and a legion of them struggle with various mental health issues. Yet the norm on campus is what's visible. And all you can see - except for the occasional leg cast - is "healthy," vigorous youth. It's possible this is more pronounced at my university than most, because the campus is hilly and the accommodations for anyone who's mobility-impaired are a joke.

This silence and invisibility contribute to the denial Daisy mentions. So does our shared but repressed fear of mortality and decline.

There are also serious perils in looking "too healthy." Julie at Alas recounts how she can't wrap her own mind around the idea that her back pain is real, and this sabotages her ability to get the care she needs. Daisy points out that Julie's experience collides our expectation that if a person is young, attractive, middle-class, and educated, she ought to be healthy, too, just by definition.

Maybe most people with invisible disabilities aren't as hard on themselves as Julie appears to be, but they also can't always count on the recognition and help they need. When I had my chronic fatigue experience, my grad school advisers were wonderfully supportive, but some of the other people in my orbit really didn't get it. My then-boyfriend once accused me of using my illness manipulatively because I could find energy for some activities but not others. It was hard for him to understand that my energy level varied, and that I had to set priorities. (This was the beginning of the end for me and him.) A few fellow students expressed skepticism behind my back, which came back to me through the grad-school gossip tree: How could I really be sick? I didn't look sick! Was I just trying to get a break on my coursework? To my face, though, some of my comrades radiated pity; this group overlapped with the skeptics, weirdly enough.

This time around, I've encountered only warmth and support from family, friends, and colleagues. My husband took on some of my usual household tasks. My mom sent money and offered to come help if we needed her. Friends took care of the kids, often at short notice, and one of them babysat overnight so we could go to Cleveland. One colleague gave a lecture while I was away, and another was on call to cover my seminar. Yet another found money to pay a grader so I didn't have to deal with 90 midterms.

I'm sure it helps that I'm out of the grad-school hothouse with its petty resentments. More importantly, most of the adults in my life are now old enough to have some close-up experience with disability. Without their support, I don't know how I'd have made it through the past weeks.

But the precondition for all this help was that I had to make the invisible visible. I had to take the risk of making it public. I couldn't hide under the mask of normalcy. I had to give up the privilege of passing, however uncomfortable that made me. I'm so grateful that the people in my life all chose to make that radical phenomenological leap of faith - to believe in the reality of my reality, no matter how impossible it was for them to see it.

What would it take to transform our society so that invisible disability is always taken seriously - and that leap of faith is no longer even necessary?

Wednesday Anti-recipe: Aluminum Soup

So here's what I made for dinner tonight:


That's, um, aluminum soup on the burner. I'd had a burst of energy and decided to make quiches for dinner - one with artichoke hearts, the other with asparagus. I put the pot on the burner, cranked it up to high, chopped the asparagus, and went to dump it into the pot.

That's when I saw the pot was empty. I'd neglected to add water. (What was that about my beautiful brain?)

I picked up the pot to rescue it from the heat, and the aluminum soup spilled out in a big glop. The aluminum layer sandwiched between two layers of stainless steel had liquified, expanded, and popped the bottom off the pan.

The blobular aluminum was shiny and pretty, in a perverse way:


Now, the good news is that this stove is 25 years old. It bakes unevenly and I've been jonesing for a new one ever since we bought this house nearly seven years ago. I know we could just replace the burner, but maybe this is the nudge I need to do a little research and buy a new range. Any suggestions? Past negotiations on this have always hit a stalemate because I long for a gas stove, while my husband wants something like a ceramic top that's easy to clean. As you can see, he's not being unreasonable - not at all.

The other reason I can't be upset about this is that I'm ecstatic about the surge of energy behind this kitchen fiasco. Yesterday I rode my bike to work and was pretty useless for the rest of the evening. Today I felt strong enough to bike to work again, and I still had enough oomph to embark on cooking a real dinner for just the second time since I fell sick on January 20.

As for the quiches? They were delicious.

My Beautiful Optic Nerve

I learned two things at OSU's MS clinic this morning:

1) My optic nerves are beautiful.

2) I almost certainly do not have multiple sclerosis.

I feel like my life was just handed back to me, in its entirety, fresh and new.

(Gratuitous daylily from last July's garden, just because I am so happy.)

As in Cleveland, I had a wonderful experience with the doctor at OSU. He was smart and kind. He had a great sense of humor. His wife studies the social history of medicine (which is my research field, too); I'd love to have dinner with both of them.

He spent an hour talking with me and performing a neurological exam that involved vibrating tuning forks and the Ministry of Silly Walks. All normal except that my reflexes are a bit exaggerated.

He looked at my brain MRI and told me that I also have a beautiful brain - and that my scan is normal. Normal. Those extra spots? A mystery of nature. He showed me pictures of brains afflicted with MS, and the difference was evident even to me.

I don't have to go back again unless I have a repeat performance of my symptoms, which the doctor thinks is extremely unlikely. I don't have to get a spinal tap. I'll get a repeat MRI sometime six or twelve months from now, just to be safe. That is all.

I feel incredibly lucky. Incredibly blessed.

So what went kaflooey with me? Maybe a virus; maybe the Bactrim after all; maybe something wonky with my thyroid (and I'll still talk to an endocrinologist about that). As long as I keep getting slowly better, I can live with the mystery.

I may still blog about some of the thoughts I've had lately about disability, "passing" as normal, and the relation between body and mind. But I hereby declare an end to blogging about my day-to-day health (unless I get an answer someday, after all).

You can assume, along with me, that I'll keep getting better, and that I'm wallowing in the amazing good fortune of having a beautiful brain.

Fear, Loathing, and the MS Clinic

I haven't posted much about my health this week. This is partly a denial and avoidance tactic. I've got an appointment very early tomorrow morning at OSU's multiple sclerosis clinic. While I don't expect to get any definitive verdict, simply making the trip puts me face to face with my fears again.

Best case: The doctor will order a slew of tests and tell me my brain MRI is not especially damning. Worst case: He'll order a slew of tests and tell me I'm at high risk of developing MS. Either way, I'll march through the tests, and then I'll wait. Diagnosing MS is always a waiting game. The very definition of the disease requires either deterioration over time on an MRI or two attacks on separate parts of one's nervous system that are at least a month apart.

I'll post on tomorrow's visit as soon as I get a chance.

The other reason I've been quiet about my health is that my brain fog has lifted most of the way. I've finally felt able to write about other topics, at least when I'm not too tired. It's not just a pleasure to have a working brain; it's a privilege. Remind me of that if I ever forget it again.

Legislating Evidence-Based Medicine

Tucked away in the stimulus bill that Obama just signed is a provision that will fund research to compare medical treatments head-to-head. As the New York Times reported last weekend, funding will underwrite research to answer questions such as:

Is it better to treat severe neck pain with surgery or a combination of physical therapy, exercise and medications? What is the best combination of “talk therapy” and prescription drugs to treat mild depression?

This is basically a good idea. Having studied the history of childbirth, I'm vividly aware of how many interventions, from routine episiotomy to fetal monitoring, have been adopted without solid evidence to back up their effectiveness. By now, research has shown both of these interventions to cause a great deal more mischief than good: routine episiotomy increases the number of severe perineal tears, and near-universal fetal monitoring has helped drive the c-section rate into the stratosphere.

And yet, while I welcome policy that would both encourage and enable evidence-based medicine, I worry about how this comparative research will be used. The Times article mentions the problem of factoring cost into calculations of "effectiveness." Knowing how insurers work, I would expect them to refuse to cover more expensive procedures and drugs unless their benefits were overwhelming.

The Times article also highlights the problems of generalizing such research to everyone without regard to racial or sex differences:

“Some drugs appear to be more effective in women than in men, while other medicines are more likely to cause serious complications in women,” said Phyllis E. Greenberger, the president of the Society for Women’s Health Research. “It’s important to look for these sex-based differences.”

But beyond this, health policy needs to recognize that individuals can respond to different drugs in very individual ways. For instance, I've been reading up on the drugs used in multiple sclerosis. This isn't a purely theoretical concern for me, because odds are good that I'll be put on one of them if the neurologist I see next Monday judges me to be at high risk of developing MS. Some people don't respond at all to the basic MS drugs (interferons that try to down-regulate the immune system). Others suffer from side effects that force them to try out medications in a different class. It's really kind of a no-brainer that people with MS need to be able to choose among all the drugs currently on the market, including a couple that can have very grave side effects. Yet it's easy to imagine an insurance company using comparative research to deny coverage of all but the cheapeast drug. This problem will only grow more acute as the experimental MS drugs currently in the pipeline (hopefully) reach the market over the next few years.

I'm not arguing that comparative research shouldn't go forward. We need medicine to be anchored more firmly in scientific evidence. I'm just insisting that we equally need guarantees in law that insurance companies can't use the results of such research to keep tightening the scews on sick people who need treatment.

More Lattes for Me

Lately Kittywampus has been mostly quizzes, LOLcats, and me me me. Today follows in that vein, though minus the felinity, with a quiz I took (via Blue Gal):

What Breed of Liberal Are You?

My Liberal Identity:

You are a Reality-Based Intellectualist, also known as the liberal elite. You are a proud member of what’s known as the reality-based community, where science, reason, and non-Jesus-based thought reign supreme.

Take the quiz at www.FightConservatives.com

I obviously need to up my latte intake.

Actually, I have resumed drinking coffee again without any apparent ill effect. (I'd dropped down to homeopathic amounts of Diet Pepsi, hoping that reducing caffeine would help tame my tremor.) My hands aren't any shakier for it, and my brain is definitely less jello-like.

I still lack the energy for writing much of substance, although I'm stewing in thoughts about octuplets and reproductive rights and kinky sex and feminism and the authority of experience. (I wasn't planning to roll all of that into a single post ... but hmmm, it might be entertaining. Kinky octuplets, anyone?)

I rode my bike to work today, which I'm afraid overtaxed my limits. I taught my class, wobbled home, and spent the rest of the day on the couch, gobsmacked with fatigue. Last time I felt anything like this, I had altitude sickness after a long hike in Yosemite.

At moments like these, I sort of get why people migrate out of the reality-based community. Where's Ernest Angley when I need him? (Click on that link at your own peril.)

As always, I'm curious to see how you came out on the quiz.

In Love and Romance, Sickness and Health

All right, I'll admit it: I like getting flowers every once in a while. I don't believe they should be mandatory for a particular day, and I think the commercialization of Valentine's Day is about as sexy as the commercialization of Christmas. It's just capitalism revving its internal motor.

But still. I got flowers today and I adore them. Their backstory is pretty cool. My husband bought a raffle ticket from one of the administrative assistants in his department. He just figured he was donating $5 to one of the poorly-funded schools that borders our own relatively fortunate district. Instead, he won a dozen roses in a vase.


These are the lucky roses. (The keen eye will note the Ants in the Pants game in the background, which tells a whole 'nother story about my life.)

I love the idea of winning anything. It makes me feel lucky in general. I am totally reading this as a good omen for my whole life.

And yet, these roses pale next to to the real gift I got this Valentine's Day. My husband was supposed to spend most of the week at a conference in Germany. He didn't go. He stayed home with me instead. When he could have been reconnecting with old friends and basking in scholarly acclaim, he drove me up to Cleveland and held my hand and promised we'd get me healthy again. He didn't think twice about his decision.

That line about "in sickness and in health"? This is part of what bell hooks is getting at, I think, when she writes that romance is a fickle and a shaky foundation for a life, while love is solid but demands that we consciously choose it over and again. (I realize I keep harping on this idea of hers, maybe because its ramifications are more complicated than they first appear.)

I've been on both sides now, the sickness and the health. Both exact a higher cost than most of us imagine when we utter a vow in the flush of youth. If we're wise - or at least lucky - we keep choosing love anyway.

I see no reason to swear off romance: the butterflies, the flirtation, the vase full of red roses. Love ought to be fun, too, after all. But when the petals shrivel and fall, it's love that remains - with its constant demand to choose - challenging and sustaining us.

Rockin' Cleveland

No, I didn't get to go to the Rock and Roll Hall of Fame, but I still rocked Cleveland. Or it rocked me. And all in a good way.

The doctor I saw at the Cleveland Clinic, Rula Hajj-Ali, was brilliant in every way. She listened attentively and asked loads of questions. You could see her mind work as she pieced the puzzle together. I think she's among the smartest people I've ever met. She was also incredibly generous with her time, spending close to an hour with me. Not least, she had a calm, warm demeanor.

Her judgment: I don't have vasculitis of any flavor. Lots of factors went into her assessment, but the bottom line is that I'm feeling better without treatment. That shouldn't happen with vasculitis. She ordered tests for a few even more exotic ailments, just to make sure we don't miss something. She also says I need to see a neurologist and get a spinal tap (yes, I'll be sure to insist on the one that goes to eleven) but she'd be surprised if that yielded any abnormalities.

While she obviously can't guarantee anything, she thinks I'll most likely continue to improve and be okay.

As for my slightly mutant MRI? A few days ago my mom and sister started wondering about an episode when, as a young toddler, I had a severe reaction to a smallpox vaccine. Fever convulsions sent me into a continuous seizure for an hour and a half straight. Everyone was afraid I had brain damage. (You may be the judge of that!) When I came out of it, I immediately said "cookie," to my parents' and doctor's great relief. I did have to re-learn how to walk again, so evidently some sort of damage occurred.

Anyway, both my local doctor and the specialist I saw today think that the multitude of bright spots in my brain could well be the result of that unusual seizure.

Or we could just say that I'm brighter than we thought. No? Okay, I'll settle for being happily home, reunited with my kids (who managed not to scare off their sitter's hopes of having her own children someday), and less worried than I've been in quite a while.

Oh, and if anyone ever considers going to the Cleveland Clinic for treatment: Do it. I encountered so much kindness and competence. They even had a huge brown bear Newfoundland named Teddy Bear hanging out in the lobby as a "greeter." His actual job was as a therapy dog, visiting sick kids. It's the small things that count - or sometimes, the mammoth furry ones.

This is not the actual Newfoundland I met today, but it gives you a general notion; this gal's name is Jill and the photo is by Flickr user 2-Dog-Farm (used under a Creative Commons license). Now picture this mountain of a dog in a hospital lobby ...

I'm Off to Cleveland

I've got an appointment at the Cleveland Clinic tomorrow morning, so we're driving up tonight. I'm trying to think of this as a romantic getaway and not quite succeeding.

I'll see the specialist who was first author on the article on CNS vasculitis that I linked to last week. (Here it is again - you can see what she looks like.) She should be able to either rule out that possibility, or else order the right tests and make the right diagnosis. I think I'll be in good hands with her.

I feel very scared about my overall situation. While I've seen real improvement over the past week, I'm still very, very far from normal. Seeing a specialist somehow makes everything seem more concrete and threatening, even though I'm very grateful to be seeing a real expert.

I've had loads of test results come back negative, which is great. I know I don't have several different cancers; lupus or Sjogren's; any of the STIs that can affect the central nervous system; and a bunch of other stuff.

As far as I can see, the remaining possibilities are a fairly short list:

• CNS vasculitis (rare)
• MS (my symptoms and MRI don't quite fit, but I'm terrified of it)
• Transverse myelitis
• Some weird post-infection reaction (possibly to the surface infection in my nose that I had when this all began?)

The one test that came back showing a problem: Vitamin D! And that after all the time I spent biking in the summer and fall. You'd think I'd have a decent store of it. Anyway, that's being treated.

Low vitamin D can contribute to the risk of various cancers, MS (eek), other autoimmune diseases, and most obviously weak bones. So here's my health PSA for the day: everyone should take a supplement - and get some sunshine!

Update 2/11/09, 11 p.m.: I'm now in the hotel, and since I'm superstitious in certain ways, here are the good portents of today:

1. I got a $67 a night rate downtown with free breakfast and parking at the Comfort Inn, which turned out to be located right next to Cleveland State. The hotel is not a pit. The neighborhood is has the character of an urban college campus, so I feel right at home.

2. The hotel room turned out to be a two-room suite.

3. The hotel wireless actually works.

4. On the trip up, we drove through tornado watches and severe thunderstorm warnings (up to 70 mph wind plus hail) and yet we barely even encountered any rain along the way.

5. My kids went to bed happily with their babysitter (a friend of mine who's spending the night).

Pretty auspicious, I think. :-)

Caturday Health Update: Having the Dumb

Empty-bubble-brained kitteh from I Can Has Cheezburger?

I'm happy to report I'm doing better than this kitteh. My head keeps getting a little clearer, day by day. Oddly, I can pinpoint just when the fog started to seriously lift: 5:30 Wednesday, following a few Advil and a nice phone chat with a friend while reclining comfortably in my bed. Obviously I should do that more often.

I'm starting to be really hopeful. Maybe that means I have the dumb, fur real. Maybe I'm grasping at straws, churning in denial. But my gut feeling is no, I'm really beginning to feel better.

Good thing, too. I don't do the dumb anywhere near as cutely as a LOLcat.

Life, the Feminist Universe, and Everything

Lauredhel at Hoyden About Town links to a fascinating interactive graphic showing linkages in the feminist blogosphere. Kittywampus is on the map, much to my surprise! It's cool to be part of the feminist universe, even if I'm a white dwarf or a nebula. Heck, I'm just pleased not to be a black hole.

The map was part of a presentation at the Feminism 2.0 conference. If you're curious, you can check it out here. (You'll need to log in with username= fem2pt0 and password= linkfluence.) I haven't figured out the methodology behind it, but it seems to be based on ingoing and outgoing links, and I suspect this includes one's blogroll. They've also got a ranking of the top 30 feminist blogs, again based on links, as far as I can see. It's hard to tell how inclusive the map actually is, since the map structure doesn't allow for a comprehensive list of all the blogs it depicts. I saw lots of familiar names but missed a couple, too.

So my blog is apparently healthier than I am. However! I felt distinctly better today. My hands are steadier, and so is my brain. For the first time since my illness started on January 20 (yes, Inauguration Day) I gave a lecture without feeling like it was an out-of-body experience. I don't know if this improvement will continue, but I'm feeling greatly cheered.

I also saw my doctor again, and we're running lots more tests - twelve vials of blood yesterday, and two more tomorrow - so I feel like the medical wheels are turning. Up to now, the blood tests have been relentlessly normal. My doc is going to try to get neurologists who are experts in MS and vasculitis to take a look at my MRI. (There's really only one type of vasculitis that I could plausibly have, a fairly rare condition called benign angiitis of the central nervous system. If you follow the link, note that the scarier variants don't fit my symptoms, nor is anyone about to do a brain biopsy on me! BACNS is highly curable with strong steroids, and it doesn't normally recur.)

In short, I'm feeling stronger, physically, and hopeful, emotionally. After the dark places I've visited recently, it's the most brilliant feeling in the galaxy.

Things Could Be Worse; I Could Be This Cat

For those of you who are kindly checking in to check on me: I'm hanging in there, feeling mentally a little clearer than yesterday and emotionally a whole lot stronger. For part of the day I was feeling downright ornery. I'm frustrated to be in a holding pattern but I'll see my regular doctor tomorrow to discuss what's next.

In the meantime, here's something Badtux posted over the weekend that's been excellent medicine with no untoward side effects - except for my kids making me play it over and over and over. (And I laughed every time. I'm a little simpleminded these days.)

Update on Me: Another Good Reason to Watch Dr. House on TV

If you've ever watched House on TV, you know that in every other episode "vasculitis" enters into the differential diagnosis. If you've never watched it, you should know that Hugh Laurie plays the drollest misanthrope ever to grace the small screen; that it's a medical detective show featuring Dr. House solving impossibly complex cases; and that vasculitis should practically get star billing.

I used to joke about how the diagnostic trail always led through lupus, lymphoma, Guillain Barre ... and vasculitis. (Oh, and the mandatory break-in into the patient's home to see where he or she was lying about their medically relevant recreational drug use/sexual history/other vices and secrets.)

I'm not laughing today, but I am grateful that I googled vasculitis months ago so I could follow the plot of House. Because vasculitis is the leading candidate for what's wrong with me.

Initially, the radiologists' report came back suggesting MS, with vasculitis mentioned as another possibility. However, because the report was frustratingly vague, I badgered my family doctor for clarification. That resulted in a second, more experienced radiologist reading my scans. His opinion was that the lesions in my brain would be unusually small and atypically located for MS.

Now, MS could still be the culprit, and I had some very bad hours in between my two conversations with my doctor. Right now, though, I think vasculitis is probably the correct call. To sort it out, I'll have to undergo various unpleasant tests, and it's possible I'll have to park in the hospital to get them done sooner rather than later. I'll obviously go to Columbus for all of this; Ohio State has an excellent neurology department.

If the OSU guys come up with a working diagnosis of vasculitis, I'd get high-dose corticosteroids (a prednisone relative). Not a picnic, but the prospects would be good for recovery, as far as I understand. (If you start googling "primary CNS vasculitis" or "cerebral angiitis" or variations thereupon, you will find some pretty alarming stuff. I don't recommend you do it. My situation, so far, seems to be serious but not nearly as dire as what you'll find on the intertubes.)

If vasculitis is ruled out, then we'd be back to a workup for MS.

Blogging may be thin through all of this. If I can get to feeling a little better, there's all sorts of stuff I'd love to say. Concentrating is hard, though, and most of my spare time and energy is going into researching my situation.

Yes, I know all that googling can be unhealthy. But I wouldn't have known how vague that first radiology report was, except for my research. I wouldn't have pressed for more answers. I wouldn't have known which answers to press for. And that would've left us with a possible red herring and perhaps a harmful delay in further testing. (Time is more urgent in CNS vasculitis than in MS.)

I've been terrified and I'm still scared. But I'm almost equally swamped by the outpouring of love and support from every direction:

My husband, who is dealing with much of the domestic burden and letting me know that he's there for me no matter what.

My family in California, who are willing to hop on a plane if it'll help.

My colleagues, who have already taken on extra burdens and will carry my classes when needed.

My neighborhood friends, who've held my hand at the doctor's office, brought flowers, and swooped up the kids so I didn't have to act brave the whole time. (I do brave rather poorly.)

And not least, my farawy friends who've poured those same impulses of love and kindness into emails, google detective work, and quiet worry.

For someone with blobs in my brain, I'm greatly blessed. So very blessed that I'm tearing up - again! - as I write this.

My Magnetic Personality

Discombobulated kitteh from I Can Has Cheezburger?

If I seem charmingly magnetic today, it's because I got all the atoms spun around in my brain.

I didn't come out of the MRI in as many pieces as this kitty. I did find it a tad discombobulating, compared to my experience with the breast MRI. Maybe that was because the machine made some remarkably high-pitched whirs. Maybe I could feel those atoms whirling. On balance, I still like the John Cage-like music of the machine. Some of the lower pulsing noises would've made a nice backdrop for a nap, if not for the $3000/hour price tag.

Since I kept my appointment for the MRI, you've deduced by now that it was probably more than just the Bactrim making me sick. I'm going on that assumption, since I still have lots of symptoms. I won't know much more about their possible causes until Monday, when I see my doctor again.

I'm getting checked out for most of the auto-immmune bugaboos. The one that fits my symptoms uncomfortably well is multiple sclerosis. That's not always an easy diagnosis to make, and it can be a very tough one to live with. If that's it, you can hope for a relatively benign form of it. Or you can hope that the promise of stem-cell treaments are borne out: Just today, researchers announced that they had halted and occasionally reversed disability in early-stage MS patients, using their own immune stem cells (not embryonic ones).

For now, I can just say my motor problems are marginally improved; they seem to be worst in the afternoon and when I'm cold. My brain fog is definitely better, though it's hard to keep up with conversations in a group. I have a tough time focusing on very dense prose. Your average blog post is just about at my mental level, conveniently enough. :-)

I'm trying to get enough sleep (even napped this afternoon), avoid my favorite grape-based neurotoxins, and downing fish oil and vitamins (a B-complex and D). I'm going to ask for a B12 shot. Assuming some sort of demyelination has occurred, I want to promote remyelination. Any ideas gratefully accepted!

My colleagues are being wonderfully supportive in word and deed. Everyone on the team for the big class on Religion, Gender, and Sexuality is helping in one way or another. Another colleague found money to pay one of my co-instructors to grade the midterms, which will spare me a lot of stress and gain me some sleep. In women's studies, my students are patient and accepting, while my fellow professors have offered to help in any way they can. I'm blessed, and I know it.

But I'm also scared. And so all of your good thoughts, vibes, prayers, and whisker rubs are gratefully, promiscuously appreciated.

What the Hooman Vets Told Me

Reluctant patient kitteh from I Can Has Cheezburger?

So Thursday night I got sprung from the hospital, once the ER doctor called my regular doctor and got him to promise to see me the next day. Feeling much like this LOLcat, I dragged myself to the hooman vet. He examined me pretty thoroughly. All my reflexes appear normal. Nothing seems to be bulging in my eyeballs. My grip strength is just fine.

Both doctors seem to agree that I've got some weird neurological thing going on, but it's subtle and almost definitely not due to a stroke. In fact, I seem to be perfectly healthy except for an unexplained tremor, a sense of heaviness, wobbliness, and clumsiness in my limbs, brain fog, overall fatigue, and - for lack of a better term - a trippiness in my view of the world. Regrettably, it's not a good trip.

My family practitioner seems to think my crackpot theory is probably the leading one: that I'm having a freaky drug reaction. No, I haven't been promiscuously digging into unmarked vials of pills again. The day before I started feeling bad, I was prescribed Bactrim for an infection. Among its side effects are some neurological ones, including peripheral neuritis, ataxia, dizziness, and more. These are pretty rare, but they've been reported. The timing in my case is highly suggestive.

So we're going to wait and see what happens and not spend thousands of dollars on testing just yet. The next test would be an MRI, and we decided to hold off on that unless I get worse. Yesterday, I actually felt better. Ditto this morning. Then I took a Bactrim and within an hour I felt worse. Just now, I began to feel a little better again. I'm thinking this weighs in favor of Bactrim being the culprit. Unfortunately I have to take it for a few more days because the infection is better but not gone.

Now, in the bad old days, I might've been diagnosed with hysteria! At least I'd have a name for it ... But I'm grateful that some seriously scary stuff has been pretty well ruled out (stroke, brain tumor, any kind of bleeding in my head). If I don't feel better once I'm off the Bactrim, then I'll have to get checked out for MS and possibly other conditions that whack the myelin of the peripheral nerves. I'm trying to stay calm about all those possibilities, because logically I really do think it's a drug reaction.

Anyway, thanks to all of you who've sent well wishes. I'll let you know how this turns out. In the meantime, between my clumsy brain and fingers, my blogging may range from sporadic to stupid. (Then again, that can happen anyday!)

A Slightly Scary Hospital Drama with a Happy Ending, So Far

Even though I adore the TV show House, it’s not only the medical facts that it often fudges. It’s mostly wrong about how people behave in hospitals, too, and what a good thing that is.

Just about every time I’ve set foot in a hospital, I’ve been amazed at the kindness I’ve witnessed. Nurses who bring an extra warm blanket. Daughters who teasingly cajole their aged fathers to “be nice to them nurses.” Spouses who manage to appear calm and comforting even when their partner may be in grave danger. Parents who reassure their frightened child. Many of them ought to be wailing and weeping and invoking the story of Job. Instead, they evince quiet courage – for themselves, for their loved ones.

I’m noticing these human details right now because I’m in the ER, on my own since my husband is home caring for our kids. Conversations overheard through the thin drapes separating the beds are a welcome distraction, now that I’ve worked my way through the novel I was reading and caught up on reading other people’s blogs. (Even my small community hospital has wireless!)

Distraction is good. For the past few days, I’ve had some very mild weakness in my left arm and leg, along with a slight tremor in my left hand. I can type but it’s as though my left fingers would rather be jitterbugging across the keyboard. I’m pretty sure I haven’t had a stroke but of course that’s what the ER doctors first have to check. So I just got back from a CT scan, which I think is a very cool thing if it weren’t for 1) the mounting evidence showing that the radiation from a CT scan is more dangerous than originally supposed, especially in kids, and 2) fear.

It’s funny. I wasn’t really scared, just uneasy, until I called my osteopath and my family physician this afternoon and was told I needed to get this checked out. It’s odd how walking into the hospital congeals those previously diffuse fears into something cold and solid in the pit of your belly.

-------------

But because I don’t want you to start sharing that frigid fear: The doctor just informed me my CT looks great. So did my blood work. There’s no sign of a stroke.

(Lucky for me the technology’s still not refined enough to detect half-baked ideas, ‘cause they’d find an awful lot of those floating around in my brain.)

I still don’t know what’s going on with me. I’ve got to come back tomorrow for more tests. But I’m grateful that the ugliest possibility has been largely ruled out. I’m grateful for the nurse who gave me just about the least-painful IV ever. I’m grateful that the doctor appeared smart and competent. (Yes, Dr. House would have found a diagnosis by now, but only after first insulting me and then recklessly endangering my life.)

And again I’m grateful for the supportive murmurs of the couple on the other side of the curtain. I don’t know them. They’re not my people. And yet, they are.

Bush's Christmas Gift to Women

As any beginning student of the German language learns, the word "gift" is a false cognate. In German, it means "poison." That double meaning seems just about right to describe George Bush's parting gift to women: the new HHS rule that allows health providers to refuse women basic health services.

Jill at Feministe has a great analysis of what's really at stake in this rule. Here's the short version (but you should really go read her whole post):

It’s being framed as about abortion, but here’s the thing: There are existing laws that protect health care workers from performing or assisting with abortion. Under current U.S. law, no one can be forced to partake in an abortion procedure if they have a moral objection.

This is about birth control.

Yep. I have just two things to add, both in connection with the Nativity story.

First, a film I often use in the classroom - Sacred Choices and Abortion: 10 New Things to Think About - starts from the premise that "Mary Had a Choice." And it's true that the Gospels don't say that God impregnated Mary against her will. They don't suggest that the Holy Spirit essentially raped her. God asked Mary if she was willing. She had a choice. She said yes. She could have also said no.

Imagine if Mary instead had to convince an intransigent pharmacist to prescribe Plan B for her after unprotected sex with Joseph? I'm not being flip about this. I sincerely think that the HHS rule doesn't protect the Christian faith; it conflicts with it.

Secondly: Over twenty years ago Margaret Atwood made a poetic plea for all women to have the same reproductive choices as Mary. I would like Bush and his minions to have to write out this poem over and over again until they knew it by heart - until they took it into their hearts. I realize that would take a miracle on par with the virgin birth.

(Warning: This is a poem, but it vividly depicts sexual violence, so it's not for you if you're easily triggered.)

Christmas Carols

Children do not always mean
hope. To some they mean despair.
This woman with her hair cut off
so she could not hang herself
threw herself from a rooftop, thirty
times raped & pregnant by the enemy
who did this to her. This one had her pelvis
broken by hammers so the child
could be extracted. Then she was thrown away,
useless, a ripped sack. This one
punctured herself with kitchen skewers
and bled to death on a greasy
oilcloth table, rather than bear
again and past the limit. There
is a limit, though who knows
when it may come? Nineteenth-century
ditches are littered with small wax corpses
dropped there in terror. A plane
swoops too low over the fox farm
and the mother eats her young. This too
is Nature. Think twice then
before you worship turned furrows, or pay
lip service to some full belly
or other, or single out one girl to play
the magic mother, in blue
& white, up on that pedestal,
perfect & intact, distinct
from those who aren’t. Which means
everyone else. It’s a matter
of food & available blood. If mother-
hood is sacred, put
your money where your mouth is. Only
then can you expect the coming
down to the wrecked & shimmering earch
of that miracle you sing
about, the day
when every child is a holy birth.

From Margaret Atwood, Selected Poems II: 1976 - 1986, p. 70.

Atwood holds the copyright on this, of course, and if anyone objects to my reprinting it in its entirety, I will take it right down. She was describing truths from history and nature, but as usual, she was also all too prescient about the future.

Photo by Flickr user andy castro, used under a Creative Commons license.

What I Never Knew about Sex and Anti-Depressants

From I Can Has Cheezburger?

By now, I think it's pretty common knowledge that Prozac, Paxil, Zoloft, and all the other anti-depressants in that class (SSRIs - selective serotonin reuptake inhibitors) can cause serious sexual side effects. They can cause delays in arousal and orgasm. Some people lose the ability to have orgasms altogether. Some men develop erectile dysfunction. Some people lose their libido altogether.

In this week's Boston Globe, journalist Carey Goldberg reports that the scope of SSRI-induced sexual problems is greater than had previously been recognized. Early studies put the number of Prozac users who developed sexual dysfunction at about four percent. Now, Goldberg says, that percentage is being revised dramatically upward:

But more recent studies, in which patients were more likely to be asked about specific sexual side effects and thus more likely to report them, suggest that the ballpark range of those affected by SSRIs is between 30 percent and 50 percent, said researchers including Dr. Richard Balon, a psychiatry professor at Wayne State University who studies the symptoms.

That would translate into millions of affected sex lives among the estimated 1 in 8 American adults who have tried these antidepressants in the past decade or so. Some studies have found the range still higher.

Wow. Fancy that. Doctors hadn't bothered to ask specifically about sexual problems. I guess they were trusting that patients would volunteer the information? And then they just assumed that no news was good news?

This goes way beyond naivete or cluelessness. This is not just another instance of doctors being pathetically repressed when it comes to sex - although it's true that far too many doctors are embarrassed to talk about sex ... and then they wonder why their patients don't raise the issue? This is also more than just the drug companies not wanting to know the complete downside of some of their most profitable products.

This is boneheadedness. Plain and simple. This is the ostrich approach to practicing medicine. Just prescribe a powerful drug, then stick your head in the sand of comfortable ignorance and assume all is well.

However, the wide prevalence of SSRI-induced sexual dysfunction is not even the worst news. The most disturbing part of Goldberg's article is this:

[A] handful of recent medical and psychological journal articles document a small number of cases in which sexual problems remain even after a patient goes off the drugs.

This is something I'd never heard. And I'm one of the folks who's been paying attention. I know plenty of people who've taken SSRIs for short periods or long-term, and I'm willing to bet very few of them realize that sexual side effects may be permanent.

Goldberg reports that the scope of this problem is unknown because - surprise, surprise! - it hasn't been studied.

Based on recent case reports of persistent effects, an article earlier this year in the Journal of Sexual Medicine said patients should "be told that in an unknown number of cases, the side effects may not resolve with cessation of the medication." ...

In the past two or three years, scattered published case reports from around the country have described patients whose sexual symptoms failed to resolve after going off antidepressants.

Dr. Robert P. Kauffman, chair of obstetrics and gynecology at Texas Tech University, has published accounts of three cases in his practice. "It's probably a small number of men and women," he said, "but I really think it deserves investigation."

Psychologist Audrey Bahrick at the University of Iowa said she became concerned when she observed that several clients whom she followed went off SSRIs and "very, very credibly to me, they did not recover" sexually.

Among their symptoms, she said, were "telltale signs" of SSRI-caused dysfunction, unrelated to the known effects of mental illness. They had "pleasureless orgasms," and "genital anesthesia," in which sex feels no more intense than a handshake. She became particularly concerned about adolescents put on antidepressants, whose sexuality might never have a chance to develop normally.

Bahrick began to explore. She found that post-SSRI sexual effects had never been systematically studied, but she came across a Yahoo group called SSRIsex, a support group for people with "persistent SSRI sexual side effects" that now has more than 1,800 members.

I'm not suggesting that this figure of 1800 sufferers tells us anything about the true scope of the problem. The thing is, no one knows how big the problem may be. And the ostrich approach isn't miraculously going to shed any light on it.

Now, I'm not trying to demonize anti-depressants. I've seen them drag people out of despair. At the risk of sounding overdramatic, I'll even say I've seen them save lives.

I'm just saying we need to have a grip on the full range of these medications' possible side effects and their probability, so that patients can decide, in consultation with their doctors, when the risks just might outweigh the benefits.

And if that's not happening - if patients are tinkering with their brain chemistry without fully informed consent - well, that's just depressing.