Spotlight: Janet Geddis

Spotlight: Janet Geddis Blog: The Migraine Girl http://themigrainegirl.blogspot.com/ Blogging since: February 2006 Migraines: Since puberty; diagnosed at 21 Work: I work as a tutor and storyteller at homeless shelters. In the next year or so, I'll open an independent bookstore in Athens, Georgia with a friend of mine!

What made you start your blog?
I first started writing as a way to express myself, relieve stress and show that I’m feeling better than I really am. But now I’m more out of the closet, showing how migraine disease effects my life every day, every minute.

How do people react?
The outpouring of love and support has been staggering. Many people I’ve never met say they find solace in my blog and that it's been instrumental to find someone who gets it. That makes me feel wonderful and warm.

Who are you reading these days?
Kerrie Smyres, who blogs at The Daily Headache, is a kindred spirit. Her recent post, Where Have I Gone? Seeking My Identity and My Life could have come straight from me. If you've ever felt down about your life with chronic pain, read this.

Kerrie also posts relevant articles on research studies and clinical trials, and gives non-condescending advice about how to manage life with migraine and headache. And last year's Acceptance: My Best Treatment was pretty calming, too.

Chronic Babe's Jenni Prokopy taps right into my brain sometimes too. Lots of my stress comes from my wanting to impress people, from my fear of letting others down. This post was reassuring, as was the follow-up post that combined several readers' responses.

How are you treating your migraines?
For several years, I took a pretty heavy handful of pharmaceutical drugs and had to deal with some pretty crazy side effects -- hugely swollen lymph nodes all over my body, dramatic weight loss, memory loss, and a general sense not being as “with it" as I used to be. As I learned more about the disease, I gained the courage to drop the daily meds. It took a good long while to let go, but I feel better for it now.

These days, I take Petadolex. It’s wonderfully helpful and side-effect-free (for me, at least). I also take a gargantuan amount of Vitamin B2, 500 mg of magnesium, and omega-3 fish oil to help maintain my energy level. They do seem to help with migraine prevention, too. And I still take triptans whenever I have a bad attack, but try to hold off for fear of rebound headaches and a shallow bank account.

What treatment research interests you?
I want to be examined at an Irlen Diagnostics Center so I can get special lenses that will help me be less sensitive to fluorescent lights and night driving, two of my most persistent migraine triggers.

For years now, I've sat in the corner of classrooms dressed in oversized sunglasses and a hat to prevent too much flickering from affecting my oversensitive eyeballs and brain. Each time I enter a grocery store or clothing boutique, I put on my disguise. In graduate school I worked as an editorial assistant for an educational journal. My office was a teensy room off the department's main office. I would turn off the blaring overhead fluorescent light, turn the brightness on the computer screen way down, and only emerge wearing my protective gear. One of my professors took to calling my space "the Bat Cave."

I heard about Irlen lenses a while ago but have been hesitant. What if this “sure thing” doesn’t work for me? Or what if it is a partial cure and I've wasted all this time dilly-dallying?

I’ve been reading about people who say their headaches have decreased since wearing them the lenses. The Irlen folks use different colored lenses and overlays to counteract the flickering blue of fluorescent lights. As compact fluorescent lights (CFLs) take over more and more of the world, I need to protect myself. I'll be sure to report back on my blog.

Describe your advocacy work.
I belong to a migraine blogger’s group on Yahoo. Our latest venture, sparked in part by me but primarily orchestrated and written by Diana Lee, is a petition urging Congress to rethink its mandate to phase out the use of incandescent lighting in favor of compact fluorescents. Instead, we’re pushing for the widespread adoption of another lighting source - LED - in public places. This is something I'm very passionate about.

How has migraine disease affected you professionally?
The one year I tried working full-time, I was so wiped out after an eight-hour day that I’d have to crash for 14 hours to recover. As I finished graduate school, I accepted that a full-time job would wreak havoc on my health. My parents have been extremely supportive helping me make ends meet.

In the last few years, I've picked jobs with very understanding bosses. I do meaningful work, but it's not my dream work. Right now I’m in the process of starting a business with a friend—an independent bookstore. That is going to take a big financial and emotional toll, but the positives outweigh the negatives. Frankly, I'm terrified of what may happen on the migraine front, but I'm finally willing to take a risk to pursue what I love. My business partner knows my disease is a huge factor. I’m grateful for her understanding.

Learn more about Janet.

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