Thursday, April 29, 2010

People with migraines often hibernate and withdraw from the world


It was a typical entry in Kerrie Smyres’ blog,, not one she would probably consider extraordinary among the dozens of other entries she has made there since 2005. But it stuck with me when I read it, as an example of the revolutionary phenomenon of online openness and sharing about chronic pain.

I’m referring to Kerrie’s Jan. 24, 2008 entry where she wrote about how her head pain that day made her cancel yet another plan she had been looking forward to — this time a cooking class with her husband at Whole Foods. It was hardly a tragedy, she admitted. But it did add to the cumulative frustration of years of missed plans. After all, such minor cancellations remind you of the bigger things you are missing. “Headaches steal so much of your life,” she had written in another entry. “The list is long, but includes jobs, relationships, having children, self-respect, ambition and identity.”

But the Jan. 24 entry was not limited to a personal venting session (although, Lord knows, basic venting has its place). While frustrated, Kerrie, 31, who lives in Seattle, pledged that she will continue to sign up for such classes and resist the urge to withdraw from the world: “Hibernating is way too easy — I know because I’ve been doing it the last few months. I miss being in the world. I probably won’t make all the classes I sign up for, but at least I’ll try. How else can I be sure to enjoy the good parts of life?”

In response, she got many supportive reader comments relieved to know they were not alone in their frustrations. In an interview, Kerrie acknowledged that she gets back more from the blog than she invests in it, in the form of self-knowledge and support from others.

“What I didn’t expect was how therapeutic blogging is,” she said. “When the pain is overwhelming, I no longer lie on the couch stewing in anger.” Instead, she writes about it and figures out how to best cope and move on.

This constructive approach counters the long-standing speech- and activism-chilling stereotype of women who speak out about illness: that they are “wallowing” in it or creating a “pain identity.” The basic message of the growing number of young women blogging about chronic illness — who have just become a significant force only in the past three years or so — is not one of victimhood: It’s to concentrate on what you can do, not what you can not.

This was the opinion of Iraqi-American Loolwa Khazzoom, 38, a dual Israeli and U.S. citizen now living in San Francisco, who has started the new blog, Bloggers like her, she said, are not dictating a one-size-fits all “cure” for everyone, but sharing “our toolboxes” with each other — what works for each person. For her, it’s “dance therapy, where the dance is both literal and metaphoric.”

Loolwa says that her blog gives her the freedom for writing honestly about the complexities of her chronic pain “from a very raw place,” which she wasn’t able to do as a long-time contributor to major women’s magazines. She said her editors there demanded a tidier narrative. Specifically, she felt constrained by a lack of willingness from women’s magazines to critique doctors, which in her case, only made her widespread pain worse, after the head-on car collision she suffered years ago.

Many social forces had to evolve at once to allow “sick lit” blogs such as these to arise en masse. Of course, there is the Internet. And there is the medical technology; many young women also have recently been emboldened by new research legitimizing their health problems, such as advanced medical scans rendering the “invisible” no longer so.

And feminism has a lot to do with it. After 30 years of working to prove that women were strong enough to participate in the world on an equal footing with men, we’re finally at a moment where the women’s health movement — a separate branch of the women’s movement — is able to admit “weakness,” that women are more biologically prone to pain and fatigue and need better treatments for them (something used for centuries to keep them out of public life).

The overall growing openness in our culture, much of it fostered by the women’s movement, is also a catalyst for talking about chronic pain. Younger women grew up being able to come out as gay, and expose sexual abuse and harassment – so why not mention a headache?

The blogs themselves also serve as catalysts for others. Perhaps the most influential is, started in 2005 by Jenni Prokopy, 35, of Chicago. This award-winning blog is probably the “mothership” of them all, setting an upbeat, creative, supportive and even hip tone for the others. She has commented about the generational change in women less willing to blame themselves for their pain.

Jenni had the idea for the site in 1997, when she went online for support as a young woman for her recently diagnosed fibromyalgia. She found some personal Web sites, but they were limited to the “angels and kittens” theme, which basically said “ ‘everything is O.K. because I have a kitten. I love my kitten. And here are like 8,000 pictures of kittens with a blinking logo about kittens.’ People would get a background pattern that would repeat, so there would be a cat head on a doily 50 million times with a prayer. If that works for people, that’s great. But I was really looking for something a little more sassy.”

Jenni was also influenced by the young, feminist D.I.Y. magazine, Bust, first published in the 1990s. Her content, which also includes many guest writers, is also written in a frank, conversational, no-holds barred, brunch-with-friends tone. In fact, the site is unapologetically “girly,” talking about reclaiming the parts in life of “being a woman” that often get lost as a patient, such as a being a girlfriend, wife, and otherwise sexual being. In other words, it’s less “The Glass Menagerie,” and more “Sex in the City.”

Like the other bloggers, she sees this personal conversation as necessary consciousness raising for social change — in the exam room, the workplace, and beyond.

“There are people who want to submerge these ideas, who don’t want people talking about it, who feel uncomfortable with people who are frank and open about their situation,” Jenni said. “It’s really too bad for them and if they don’t want to hear that, they don’t have be around me or other people who choose to accept it. But I really believe that when communities of women, or when communities of people, get together and talk about what they’re going through and share resources and information and ideas, they can bring about change and they can help each other live better.”

Indeed, I don’t take such online exchanges for granted. I know they were not possible just 10 or 15 years ago, when I really needed them, living in the depths of isolation and secrecy with my own ridiculous daily headache. Ironically, back then when I was “in the closet.” I was actually more consumed with and impaired by the pain than I am today. I lacked community support, living examples of people who live with pain, and medical education about the problem.

Now, with some acceptance of the pain, I can better manage my life. And, while significant struggles remain, things are looking up. I just published my fourth book. I’m newly married and, at the age of 40, expecting my first child in July, an opportunity I was convinced in darker times that The Headache would have robbed from me.

Most basically, thanks to many conversations with others, I have learned that acceptance does not mean “giving in” to the headache, but learning to live with how it is in the moment. In the meantime, I still hope and strive for significant relief, such as by visiting the neurologist twice a year to check out the new Big Pharma product roll outs.

Surely, the road will not be easy, but thanks to people like Kerrie, Loolwa and Jennie, I know I’m far from alone in not “hibernating” and withdrawing from the world, but instead facing it.

What's so bad about Bath and Body Works?

  • They have 5 million fragrances, yet somehow, only 4 of them smell decent. The others cause instantaneous migraines and/or vomiting. The mixing and mingling of all of these strong, vile scents in one tiny location is too much to handle. The joint smells worse than a gas station restroom off the Las Vegas strip.
  • Where do they find their cashiers? It takes these women far too long to ring up one purchase. I could literally fly to Japan, hand-pick herbs, find a sumo wrestler, have him crush them for me, and then return home with my own lip balm – before the idiot behind the register has even found the UPC bar code to scan.
Bottom line: annoying salespeople, horrid icky smells, clueless cashiers… that’s a BAN in my book.

Wednesday, April 28, 2010

What Al Gore forgot to tell you about Compact Fluorescent Light Bulbs

Guidelines for Cleaning Up Broken Compact Fluorescent Light Bulbs

■remove children, pregnant women and pets immediately

(they should not participate in or be present during the clean up process)

■ventilate the area well

■open a window and leave the room for at least 15 minutes

■wear gloves, a mask and safety glasses

■do not use a sweeper or a broom to clean it up

■do not turn on your heating or air conditioning system

■pick up big pieces with your fingers

■use sticky tape to get small pieces

■wipe the area with a wet rag

■place all broken materials collected as well as all materials used in the clean up process in a second sealed plastic bag (air tight) or a screw-top glass jar and remove them from the house.

■throw everything away that was used in the clean up process, including the rag and gloves.

■if the break occurs on a carpet, cut that piece of that carpet out and throw it away.

■wash your hands immediately

■call your local recycling center to see if they collect CFL bulbs, otherwise put it in the trash.

■as a preventative measure, it is suggested that compact fluorescent light bulbs should never be used in areas where there is carpeting or in sockets where a breakage is more likely to occur.

That’s an awful lot to go through just to reduce a tad of energy. It makes absolutely no sense. It doesn’t take a rocket scientist to see that we haven’t solved anything with Compact Fluorescent Light bulbs, we’ve only created an even bigger and more toxic monster.  It makes my head hurt just thinking about it.

What should you do?

Compact fluorescent light bulbs are filling home and office environments with dangerous electromagnetic pollution, causing devastating health issues. Neurologists are increasingly taking notice of the headaches and migraines being reported by people exposed to compact fluorescent light bulbs.

It's not only the fact that they cause headaches, it's also the fact that they contain mercury vapor, which is highly toxic to the nervous system if inhaled.

Compact FluorescentLight Bulbs are all the rage these days, with hotels, offices and retail stores all turning to them as light sources, unwittingly unleashing a new wave of electromagnetic pollution onto consumers.

So what should you do in your home? Don't buy compact fluorescent light bulbs!

The flicker

Although, as stated earlier, humans cannot see fluorescent lights flicker, the sensory system in some individuals can detect the flicker. Ever since fluorescent lighting was introduced in workplaces, there have been complaints about

  • headaches,

  • migraines,

  • eye strain,

  • and general eye discomfort

Years ago my optometrist declared that fluorescent lights should be outlawed because they were very bad for our eyes. When working in offices I would be very prone to migraine attacks, in fact I could count on at least 3-4 days out of a week with non-stop headaches. They would disappear over the weekends to return after spending the day at work on MON. 
I no longer work were there are fluorescent lights, and I no longer have the migraines. 
I for one dread the this ruling. I absolutely despise fluorescent lights, they make my eyes tired,  and it physically makes me ill.

- Mar, Surrey, UK, 02/1/2008 08:54

Was waiting for people to realize this. These bulbs flicker at a frequency that the brain picks up and the eye can't. Of course the government and people who are making money out of these bulbs will deny it, but its true. Same with pc monitors flickering at 60 Hz. Causes headaches.

- George, Bath UK, 02/1/2008 08:32

Please sign the petition

Please sign this petition asking Congress to amend the Energy Independence & Security Act of 2007 to meet the objective of promoting energy efficiency while also protecting the health of Americans who will be negatively affected by Compact Fluorescent Light Bulbs.

Saving energy and putting less waste into landfills is a worthwhile and noble goal. However, the decision of the U.S. Congress to mandate phasing out of incandescent light bulbs is of grave concern to citizens whose health is adversely affected by compact fluorescent light bulbs (CFLs).

The Energy Independence & Security Act of 2007, which was signed into law in December 2007, mandates phasing out incandescent light bulbs in favor of energy efficient bulbs starting in 2012. While CFL use is not required by this legislation, CFLs will undoubtedly become more common. They are more affordable than other options, such as light emitting diode (LED) lighting. Additionally, many people are simply unaware of the potential harm they hold for people with certain health conditions and do not know to avoid their use.

For some people with migraine disease, CFLs trigger debilitating migraine attacks. Migraines impact more than 32 million Americans and have a devastatingly negative influence on the economy and the lives of those who are plagued by them. According to the Irlen Institute, research at the University of Birmingham in England showed that many migraine sufferers are sensitive to the flickering from fluorescent lighting, TV screens, and computer monitors. Proponents of switching to CFLs often claim newer CFLs do not have the visible flicker of older CFLs and regular fluorescent light bulbs. However, just because the flicker is imperceptible to the eye does not render it imperceptible to the brain. The brains of migraineurs are extremely sensitive and tend to overreact to stimuli that would not bother the ordinary person. In fact, most migraineurs experience photophobia, extreme sensitivity to light, during an attack.

CFLs negatively affect some people with other health conditions, too, such as lupus, epilepsy, and autism. People whose health is affected by CFLs will become increasingly shut out of public life as businesses and institutions switch to CFLs. They will be rendered unable to do even the most basic tasks, such as banking, grocery shopping and other daily errands.  (More than fifteen minutes in WalMart and I begin to feel a migraine coming on.)

 CFLs have been identified as a trigger that brings on an attack for some people with the genetic tendency to experience migraines.

The concern about CFLs triggering migraines is in no way based on
a hostility toward protecting the environment. In fact, we acknowledge
that there are alternatives to CFLs that meet the same ecological
objectives without putting the health of millions of citizens at risk,
such as LED light sources. Rather, this is a public accommodation issue. Spaces open to the public should be strongly encouraged to use LED lighting so that everyone can safely participate in life outside the confines of their homes.

Thank you for supporting this effort.

To sign the petition:  


About Me

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I am a salesperson for Frank Emory Publishing.