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LadyBlogger #4: The Daily Headache

Here's the fourth edition of LadyBloggers, where we profile a ChronicBabe who's doing superior writing. There are so many great web sites out there created by, and for, ChronicBabes. But sometimes it can be hard to find them! LadyBloggers is a way to connect you with some of our favorite resources, and offer a peek at why and how these women are sharing their voice in the community. And maybe we'll spark some creativity in you, too! If you want us to profile your web site, let us know and we'll consider your project.

And now, without futher ado, we bring you:

The Daily Headache, created by Kerrie Smyres

What's your chronic?
Chronic daily headache and migraine.

How old were you when you were diagnosed? How old are you now?
I'm 29 now and my definitive diagnosis was in 2002, when I was 25. I'd been searching for a diagnosis and treatment since my early teens. It was a long, frustrating fight.

What's your everyday life like?
I haven't worked in a paying job since August 2003 and was part-time for eight months before that. I've always been an overachiever, so it's been hard to adjust. I've been blogging since June 2005. It fulfills me in a way no other job has done. For the first time, I truly feel like I'm making a difference, which has been my desire since college.

My other interests include reading, travel, baseball (watching, not playing), baking, nesting and getting to know Seattle, where I've lived for less than three years. I love coffee and reading and writing in coffeehouses. My favorite is also a roaster, so I smell divine for the rest of the day.

What do you think is the biggest issue facing young women with your chronic?
Getting adequate medical treatment. Headache is a disorder that too many doctors dismiss easily. Chronic daily headache is spilt between tension-type and migraine. Not much is known about either type, but migraine has gotten more attention, so it has more treatment. Tension-type headache was originally called tension headache because it was thought to be caused by tense muscles in the neck and shoulders. It's been discovered that that's not the case, so patients and doctors are in the dark.

About half of people with migraine are undiagnosed. They usually don't fit the criteria that everyone associates with migraine, like aura, nausea or light and sound sensitivity. The symptoms are much more complex than this and someone doesn't have to have all of them to have migraine. In fact, only about 15% of people with migraine have auras. Instead, migraine affects almost every system in the body, which leads to unexpected symptoms. Few patients know this, so it's terrifying when they hallucinate odors, become disoriented, are unable to find words and follow conversations, hyperventilate, or their heart rhythms change.

Also, many of the medications used are ineffective for chronics. There's a class of migraine abortives that are effective for many people, but they can't be taken more than about 10 times a month. Even if the drugs work for them, people with chronic daily headache face two-thirds of each month without them. Preventives are a shot in the dark, but all migraine and tension-type headache patients try them thinking maybe this will be their cure.

Furthermore, some of us have to turn to painkillers much stronger than Advil to get any relief. As recent news shows, getting a prescription for narcotics is grueling and often unsuccessful.

How about the biggest issue facing ChronicBabes in general?
Having others believe our illnesses are real. The idea that women are "hallucinating" or exaggerating their symptoms prevails. When told about a woman's illness many people, consciously or not, immediately revert to the hysterical woman stereotype. This is particularly a problem with invisible diseases and disorders, but it is by no means limited to them.

What inspired you to start a blog? When did you start it?
I called to make an appointment with a headache specialist in Seattle. The first new patient appointment she had was six months out. To even see her, sufferers must have a track record of failed treatments. The thought that so many people suffered enough to get referred to her upset me.

That combined with the knowledge that most headache information online is factual instead of personal pushed me to start the blog.

What is your main goal with the blog? Have you achieved it, or are you close to achieving it?
To let headache sufferers know that they aren't alone and that there is much more valuable information available than is typically uncovered through search engines. I also want patients to realize that they are not passive in their health care, but need to advocate for themselves when their treatment is insufficient or their doctors are dismissive.

Every day I find more new bits of information to share and have new visitors to the blog. In a sense I've achieved my goals, but they keep stretching to include more information and reach more people.

Who are some of your favorite health bloggers, and why do you like them?
Cancer NewsWatch was born out of a caregiver's love. The posts are about the latest news that isn't hyped up, but put into perspective. Cary's personal experiences as a partner, lover and caregiver shares the complicated reality of being all three combined. Lori, Cary's wife, also blogs on Too Sexy for My Hair with poignant, painful insight.

A recent discovery is Intueri, which is written by a psychiatry resident in Seattle. Part of my affinity for Maria and her blog comes from our shared city, but I'm really drawn by her compassion, incredible insight and beautiful writing.

And I couldn't do without Kevin, MD's regular news and physician-focused links. I'm a medical junkie and he gives me a daily fix.

How does the blog impact your health? i.e. - Do you feel a connection with others, or do you learn new things? Does it energize you?
I do feel a connection with readers, which is awesome. Our experiences are so similar, yet are all unique. They teach me so much and their opinions are invaluable in covering other sides of the story.

The impact on my health that I didn't expect is that I'm so much more knowledgeable and in control of my own treatment. As I learn more about new therapies or different perspectives and studies, I am able to get more from doctors. Because they don't need the back story on many topics, I get more information in the time that we have.

My doctors and I also discuss our mutual goals for patient education. Their passion for education and compassion for patients are apparent. Because I see their support for all their patients, our relationship is strengthened and I am encouraged to reach a little farther with my goals.

Finally, I am open to revisiting alternative therapies that I've tried unsuccessfully in the past. As long as it isn't potentially harmful, it's fair game. I live in a city with an internationally acclaimed school of natural medicine, so finding a provider that I click with is much easier than when I lived in Phoenix.

What are your future plans for your blog - expansion, partnerships, merchandise, anything at all.
I want it to be a stepping stone to more avenues of education. Maybe it will lead to patient support groups, public speaking opportunities, articles in local and national publications. I'm somewhat limited in that my health is the driving factor in every opportunity I explore. I'm working on balancing all the components in my life, which is something I've never been able to do.

Do you accept submissions, or do you partner with blogs and web sites to enhance your content?
I'd love to receive submissions for the blog and have a couple in the works. I don't specifically partner with any other sites, but I rely heavily on a variety of headache and health sites that provide in-depth information. If you're reading this and would like to contribute, let me know.

Posted: 2/20/2006 in Cool Tools | Also posted in: Inspiration

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