Simple Pleasures and Allodynia
If you have long hair, maybe sometimes you like to pull it back and put it in a ponytail tie or a scrunchie, especially when it’s hot outside. Or if your vision is less than 20/20, maybe you like to wear eyeglasses so that you can see well when you are driving or walking or just toodling around your home.
When I get near the end of my three-month botox treatment cycle for my chronic migraines, those things start to feel like impossible luxuries for me. The botox treatments – the only thing that seems to work to abate the frequency and severity of my migraines – begin to wear off at about 2.5 months, and then the migraines transform into more or less constant daily headache that is sometimes worse, sometimes better, but nearly always there. My scalp hurts. The back of my head hurts. My eyebrows and the bony part of my skull just above and near them hurts so intensely it feels like I have been punched in the face there. I have found that spring-loaded clips are less irritating for bundling up my hair but even these can be too much – sometimes I just can’t stand to have anything at all tugging on my hair. (This is one of the reasons I’m thinking of getting it all cut off short, short, short. Mr. Z will grieve, alas.) I use my eyeglasses for distance only so when I’m in the house I often just leave them off altogether, so that they can’t irritate me by resting on my ears and bridge of my nose. (I can’t wear contacts because of near year-round problems with allergies.)
These problems are an example of allodynia (that link will take you to a nice post on Juniorprof’s blog explaining allodynia and its mechanisms).
I once had a migraine so severe that I could not lay my head down on a pillow, because contact with the pillow hurt my face and scalp. All I could do was sit in a chair and cry. This went on for three days, until some friends discovered me and took me off to an emergency room for some pain relief, an option I had not known was available.
Treating Pain and Side Effects
I am deeply personally acquainted with pain, both chronic and acute, and the list of prescription and OTC meds I have taken over the years in an effort to prevent and control migraines, and treat their pain when they manifest their ugly selves in my life, is stunning even to me: Acetaminophen, acupressure, acupuncture, ambien, amitriptyline, aspirin, chiropracty, coffee with lemon juice, coenzyme Q10, darvocet, demerol, depakote, dilaudid, excedrin, fentanyl, fiorinal, inderal LA, lamictal, magnesium, massage, percocet, petadolex, reglan, seroquel, skelaxin, timolol, thorazine, tizanidine, topamax, toradal, tramadol, verapamil, vivactil, vicodin, vioxx, xanax, zonergran. I am pretty sure this is only a partial list as I did not go through my file with the information on all the meds I’ve ever taken since my stroke odyssey began in 2003 for this post. (I can’t take the various triptan drugs because of the stroke.)
Nearly all the preventives caused me intolerable side effects – one memorable combination landed me in the hospital with a heart rate and BP so dangerously low I nearly died, and another had the distinctly unacceptable effect of making me incontinent. And not in the “I need to pee more frequently” way. The meds that effectively treat the pain all have the same lousy side effect, too. The pain stops, but only by virtue of putting me to sleep for anywhere from 2 to 24 hours, and leaving me with a pain reliever hangover. Use them too often, and you are in danger of having rebound headaches, and/or developing tolerance. Before I started seeing my present neurologist, I could tolerate a narcotic dose that would tranquillize a horse. He got me off the narcotics, which weren’t working so well anymore, and moved me over to Botox only and non-narcotic rescue meds. These meds are extremely sedating, which I hate, but they are less likely to cause rebound, and also less likely to have tolerance and addiction issues. I’m grateful to my neurologist for giving me pain management options that don’t include the opportunity to become a drug addict.
When my migraines were at their very worst, the only pain reliever I had available to me that worked well was fentanyl. Unfortunately, one night I developed hallucinations from it. Some people may think hallucinations are a kinda trippy, fun sorta thing to experience but this was not. It was terrifying and disorienting and I lost 36 hours of my life – and had to be hospitalized, again.
This is why I am grateful beyond what words can express for botox, because it is the ONLY thing that has ever provided any real sort of relief for me. It does not cure the migraines, just sort of keeps them in check but that is still major progress.
It is also why I am grateful beyond what words can express for those who do pain research. I have relatives who also suffer from migraine, and one of them has participated in a clinical trial to help better understand how botox treatment might help potentiate the action of triptan drugs. I would dearly love to see botox treatments approved by the FDA for use in migraine treatment, because I really do think existing evidence shows it works – maybe not for everyone, but for enough people to make it worth having it as a choice when other options have failed.
pain research matters to me because chronic pain is poorly treated, poorly understood and the people that suffer from chronic pain deserve a chance at getting that part of their life that pain sucks out of you back. I hope you’ll join me with tweets #painresearchmatters
Researchers like Juniorprof are among my heroes. Read the post, if you twitter, join the twitter campaign. Comment here and on Juniorprof’s blog. If you are currently painfree – count your blessings and enjoy the day!
Hat tip to Drugmonkey for making me aware of Juniorprof’s post and campaign.
By now, perhaps, you are aware of the uproar about the ScienceBlogs corner of the bloggysphere. PepsiCo has
bought started a blog here, called Food Frontiers. Many are unhappy, bloggers and commenters alike. Read PalMD’s take, and commenters there, for one perspective.
One of the potential disadvantages [of a blog network] is advertising and sponsorship. Here at Sb, we’ve been very fortunate in that our content is completely independent. We control anything in the center column. The top and right however belong to Sb, and they use this space to keep the place running. There have been several times when the advertising has been less-than-appropriate, and SEED has responded by altering it, but in this economy, it pays to be flexible. Ad content can serve as blog fodder. There’s nothing preventing those of us who blog here from critiquing the ad content as vigorously as we wish to…PepsiCo’s PR flacks basically own a the center column content on one of our blogs. This is not only a fundamental conflict of interest, it’s also deceptive. If PepsiCo is providing the content, it should, in my opinion, be clearly labelled as advertising.
The only way to be free of any corporate influence over content is to be 100% ad-free, as Ms Magazine so candidly revealed to us at the beginning of the 1990’s in Gloria Steinem’s famous editorial, “Sex, Lies, & Advertising“, with this stunner of an opener:
Why should any woman get any degree in a STEM discipline? Especially if she has to wade through tons of bullshit courses to get there, and part of the learning, it appears, has to do with learning how to be someone you aren’t? Some other gender, some other race – or some other social class?
skeptifem challenges the female STEM universe thus:
Every once in awhile I do manage to get out to a social sort of event. Recently I was at one such thing. And overhead the following:
Female, mid-40s: When I was in high school, I wanted to be a veterinarian. And I had great SAT scores, high 1400’s [out of a then total 1600]. But my high school guidance counselor strongly discouraged me, and told me “those are really more men’s kind of jobs.” So I gave up thinking about vet school, even though I had the ability.
Male, same age: When I was in high school, I wanted to learn to type. Probably because I just wanted to take what I thought was an easy class, but I kept asking over and over to be allowed to take a typing class. My guidance counselor wouldn’t let me register for typing. He told me “you’re going to college, you don’t need typing. You’ll have a secretary to do your typing for you.” And then all through college I had to pay people to type my term papers for me, and spend hundreds of dollars on that. My first job out of college, I walk into the office and my boss sits me in front of a computer and says “you’ll have to type [complex documents in his industry] on this.” Just last week, my current boss saw me pecking away with two fingers and said “I can’t believe you can’t type.”
Sexist gender role expectations are not innocent, and not without effect, even if everybody grows up to have lives that they are more or less happy with. Both of these people have what you would call a nice life. But one of them had her whole life course dramatically changed because of a guidance counselor’s sexist beliefs about what jobs belonged to which gender, and another had to spend cash he didn’t really have to spare in college, and spends time he doesn’t have to spare now on the job, because of another guidance counselor’s sexist beliefs about who should learn to type and who would have the typing done for them.
The differential effects of sexism often mean that men are less predisposed to be aware of them – having someone tell you “you don’t need to worry about typing” is not quite as dramatic and life-altering as having them tell you “vet school is for the men, little lady”. Men do have a lot of privilege to lose in moving to a more equitable system of gender relations, but they also have some things to gain. One of my commenters – I think it was SKM – posted a link on another thread to Men’s Lives by Michael Kimmel. It’s an interesting looking collection of essays on the intersection of race, class, and gender, focusing on men’s lives, of course, as the title indicates. It would be something useful for all the d00dly Zuskateers (is that an oxymoron?) to read and ponder.
Female Science Professor has posted a checklist – “Kind of like Sexism Bingo, but in list form.” – and asked for additions.
I was going to offer a few additions, but I thought “all that crap happened a thousand years ago, when I was an undergrad/grad student. I’ll just read this list of new stuff to see what teh wimminz are whining about these days.” Because things are getting better all the time.
Alyssa at 6/17/2010 10:03:00 AM said:
Someone asks why you bothered getting a PhD if you’re “just going to have children”
and DRo at 6/17/2010 10:36:00 AM said:
You are told that you won’t be interested in a TT position once you have children.
Time machine, take us to…..1984! Hello, classmate! Hello, undergrad thesis advisor!
Anonymous at 6/17/2010 12:16:00 PM said:
Someone tells you not to talk about women or minority in science issues because it makes people think you are not committed to science.
Time machine, take us to…1988! Hello, thesis committee member! (And major thanks to all of you for that 4.5 hour prelim, in complete violation of university policy, while I’m back here visiting!)
Anonymous at 6/17/2010 12:40:00 PM said:
** When you are in YOUR OWN office, visitors assume you are an administrative assistant **
and then, when you point out that you are not the admin, are told “Oh, you must be the student worker, then!”
Time machine, take us to…1999! Hello, various random d00dches!
Anonymous at 6/17/2010 03:12:00 PM said:
One of my personal favorites from my graduate school was a comment by a faculty member meant as a compliment, at a reception, “Surely, you’re not a physicist”. “Surely, I am” I said.
Time machine, take us to…the entire decade of the 1980’s! Hello, every pickup artist and sad sack conference fuckwit who thought “you’re too pretty to be an engineer!” was a great come-on line.
Rachael Shadoan at 6/18/2010 06:58:00 AM said:
I feel that the more we focus on this kind of thing, the more discouraging it is for young women trying to join the field.
and at 6/18/2010 10:02:00 AM
Instead of long lists of how we’re under-appreciated and gender-stereotyped and in general discriminated against, I would like to see lists of creative, professional, appropriate ways to handle some of these situations.
Then, it’s less depressing because it provides the tools to handle this sort of thing. Over time (presumably), if we all use the tools to address these issues, they will decrease in number and severity.
Time machine, take us to…1989! Hello, contentious discussion at AWIS meeting where I was invited to speak about gender and science!
On second thought, time machine, never mind.
Jun. 17, 2010 3:34 AM ET
SB COMMUNITY DEEMS FEMINISTS IRRELEVANT NOBODY MEAN GIRLS, OMNIPOTENT PRIVILEGED HELLIONS
Douchey McDoucherson, ScienceBlogs Writers
Just days after a remarkable dustup in the science blogosphere, ScienceBlogs community members gathered to render judgment on feminist science bloggers.
While I was at work on this whole work-life balance stuff, a raging conversation sprung up on the WMST-L listserv about domestic workers and whether feminist women should or should not hire someone to clean their houses and help take care of their kids. (The discussion is still going on.) Some of the more interesting points have to do with questioning why this work has to be called women’s work, and why it just can’t be called work proper, and given some respect, and along with that some decent wages and benefits.
Meryl Altman, a professor at DePauw, posted a link to a short video, “Women and Work: Feminists in Solidarity with Domestic Workers,” which is on the Barnard Center for Research on Women website. I strongly urge you to view this video and think about its messages, among them: the home as a worksite; domestic work as actual labor, not “women’s work” that we just somehow need the men to help out with a little more; the need to support domestic workers in the struggle to unite, organize, and unionize for living wages, decent working hours, and real benefits; and the visual reminder that feminist women with jobs/careers who employ workers in their homes are not all white.
Of course, the video is full of a bunch of women talking about feminist shit, so probably it is completely bogus.
Bunny Rock in Zuska’s Garden
Zuska is the kick-ass alter-ego of Suzanne E Franks. When not dispensing Zuska's wisdom, Suzanne can often be found gardening, reading, or having one of her thrice-weekly migraines.
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