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Participate in a Research Survey on Chronic Migraine & Couples

Everyone with chronic migraine knows it takes a massive toll on romantic relationships and families, but there’s little research on the topic. Here’s your chance to help remedy that. Karen Bacher, a migraineur and family studies PhD student at the University of New Mexico, is recruiting couples to complete an online survey to study the impact of migraine on the families of women with chronic migraine. By sharing her findings, she hopes to raise awareness among health care providers, counselors, and patients’ families.

Participants need to be married or cohabitating heterosexual couples between the ages of 21 and 55. The female must have chronic migraine, while their male partner must not have migraine. Partners will complete an online survey separately, which takes about 45 minutes per person. At the end of the survey, participants will have the option of entering a drawing for a $100 Visa gift card.

Couples interested in participating may contact Karen at bacher@unm.edu for full eligibility criteria, benefits of participation, and the survey link.

Although I haven’t seen the survey, I’ve been emailing with Karen and am really excited about this research project, which is for her dissertation. I believe Karen “gets” the severity and impact of migraine and genuinely wants to do her part to improve the lives of chronic migraineurs. In case you’re not sure, it may help to know she’s had migraine for 29 years and gets no relief from medication, while her sister is disabled due to migraine.

I’m unable to participate because Hart has episodic migraine, but I urge you to do so if you fit the criteria. Understanding the weight of chronic migraine on families and romantic relationships is one crucial element in de-stigmatizing this illness. It could also improve our care from doctors and therapists. And, of course, anything that helps families better comprehend the plight of migraine is a boon to all migraineurs.

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Gratitude

Having just drafted a post on gratitude for Migraine.com, the topic was fresh in my mind when I couldn’t sleep the other night. Instead of obsessing over why I was tossing and turning, I mulled over things I am thankful for. Each day I list three things I am grateful for as part of my strategy to keep chronic migraine from overwhelming me; this is more of a global list. As I feel like I’ve been a complainer on here lately, I wanted to share it with you all so you see that I’m not miserable and depressed! And to share how rich a life can be even with chronic illness.

  • A husband who understands how debilitating a migraine attack is and often has a better grasp on how I feel than I do.
  • My family for being loving, caring and messy in the way only family can be.
  • Migraine friends who truly get what my days are like and non-migraine friends who try.
  • The people I get to connect with through this blog. I’m not able to be as connected as I’d like, but everyone who reaches out to me touches my heart and is in my thoughts.
  • Old friends who wait patiently while I burrow in my self-imposed migraine nest of rarely communicating with anyone.
  • My sister, who keeps calling, texting and playing Words With Friends with me even when I retreat into migraine solitude.
  • The amazing team of doctors that I kind of stumbled upon when I moved back here.
  • People who knew me before the chronic migraine became too severe to take Advil and ignore — the ones who are so understanding because they remember me as vivacious.
  • My nieces and nephew, with whom I was fortunate to see often when they were young. I’ve missed them so much the last five years, but am so proud of the teenagers they have become.
  • COBRA and pre-existing condition health care coverage, which allow my husband to pursue his dream of starting his own business.
  • Jack Kornfield’s guided meditations, which showed me how to heal, particularly Guided Meditations for Self-Healing.
  • Tara Brach, whose guided meditations and podcast talks have taught me how to experience emotions without being carried away by them. (She has also published a great book, but my favorite resources are those on her website, all of which are free!)
  • How to Be Sick, a book by Toni Bernhard that applies principles of Buddhism to life with chronic illness in a straightforward, non-preachy manner.
  • The Anatomy of Hopeby Jerome Groopman, which taught me that hope is not a blind wish, but the belief that one can live a good life against all odds.
  • Anne Lamott’s writing, especially in the writing guide Bird by Bird and her willingness to share imperfect, thought-provoking and hilarious missives on Facebook.
  • That I was able to attend some of the American Headache Society symposium and felt like my engaged, intelligent self while there. And for the dedicated, compassionate, caring physicians, psychologists and researchers I met there.
  • That Excedrin Migraine changed their ad in response to the outcry of The Daily Headache readers.
  • Getting into the groove of writing and that feeling when I get a sentence or phrase just right.
  • The friends who are so supportive of my writing.
  • Being able to read books again. Proof that chronic migraine can improve and we can get back the things we lost.
  • Doctors who pursue unlikely avenues of inquiry.
  • That I’m a natural optimist.
  • Pinterest for migraine distractions. Facebook for keeping me somewhat connected to the world even when I’m hibernating. And Words With Friends for giving me a chance to play with loved ones I rarely see.
  • Friends who don’t mind if I sit on their couch like a zombie because I’ve had a migraine for a week and need new scenery. Even when I smell like a zombie, too.
  • That I know what the basic structure of my book will be. No idea when I’ll have the energy and mental wherewithal to write it, but it will be a tool to help people with chronic illness live happy, rewarding lives.
  • Baking. Nothing I bake is safe for my severely restricted migraine diet, but the process of baking brings me so much joy.
  • Fall weather in Phoenix.
  • My adorable yellow house in Central Phoenix.
  • Oven roasted Brussels sprouts with garlic added. Really.
  • That sleep is usually easy.
  • The quirky, funny, unconditionally loving pets I’ve been so fortunate to live with. A pet is too much work for my life right now, but memories of Cricket, Kayla and Cleo keep me smiling.
  • That the 2012 presidential election is over.
  • My fantastic neighborhood yoga studio.
  • A year-round farmers’ market that’s indoors in summer.
  • The smell of rain in the desert.
  • My perfectly sized and shaped bathtub.

Yesterday I dreamed that a doctor told me I was all out of treatment possibilities and that suicide was my only option. I kept telling him that I wanted to live and he wanted to know why since I had such terrible and frequent migraines. I said, “Don’t you see, I have a great life? Of course the migraines are awful, but they aren’t the sum of my life. I have so much to live for.” I was so grateful to wake up and know that doctor was totally wrong. There is never an end to treatment options. It has been almost a year since I first felt the joy of finding a treatment that helps and I’m thankful for every day of improvement since then (even if I grumble about it sometimes).

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All in My Head?

“Your headaches are all in your head,” two uncles have told me recently. I think they were trying to be cute, playing on the notion that the pain is actually located in my head, so my illness must be in my head. I don’t think either one was trying to be insensitive. And yet, there’s not much someone could say to insult me more.

This illness has overtaken my life. It renders me unable to work and keeps me from spending time with friends and family. My house is a mess and I can barely keep up with feeding myself healthful food. To have a family member insinuate — even unintentionally — that I might making it up or am somehow mentally weak invalidates the immensity of my struggles.

The first uncle said it on Facebook and I ignored the comment. When another uncle, from the other side of the family, said it on the phone last night I said, “No, it’s in my neurology.” He said “Oh, is it?” and moved on to a different topic. I’ve been mulling over it all day, trying to decide what I could have said to this man in his 70s who knows little about migraine (after all, he refers to my illness as “headaches”). I could have pointed out that it is a neurological disorder, just like ALS and Alzheimer’s, both of which have had a significant impact on that side of the family. Migraine doesn’t have the same outcomes as those illnesses, though, and I didn’t want to scare him.

I’m still at a loss for the best way to deal with the comment. I should probably figure it out before any of my other uncles decide to tell me my migraines are all in my head. Any suggestions?

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Please Read “An Open Letter to People Without Migraine”

Migraine, chronic or not, has a profound impact on those who experience it, yet even well-meaning family, friends, coworkers and health care professionals often think of it as “just a headache.” An Open Letter to People Without Migraine was intended for my personal Facebook page — until I realized the message was too crucial to limit to a private sphere and decided it belonged on Migraine.com. It begins:

I have a migraine attack 28 days a month. I tell you this not for pity or shock value, but to beg for a smidgen of your comprehension. I want you to understand that migraine is not a bad headache, but a neurological disorder that affects every system of the body. You see, the unbearable head pain that migraine is known for is only one symptom of the illness.

For the rest of the post, which may be the most important piece I’ve ever written, please see An Open Letter to People Without Migraine and share accordingly.

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Inspiration in My Struggle With Migraine

Migraine Awareness Month Blogging Challenge #27: “In my Head and Heart” — Who inspires you to keep trying and not give up, despite your migraines?

Not giving up can be interpreted in multiple ways, from trying new treatments to continuing to engage with the world to not committing suicide. The stories I read online of people who find effective treatments after years of unsuccessful attempts keep me trying new treatments. You, dear reader, inspire me to continue writing and sharing my stories about living with chronic migraine. My wonderful husband Hart and my niece Michelle are the two people who keep me from giving up in the broader sense.

Hart encourages me in the day-to-day struggle of chronic migraine, making sure that I eat and laugh. He holds me when I wail that I want out and talks me through the frequent emotional and physical agony. He gives me strength every single day and I’m not sure I’d be here without him. He also makes excellent popcorn.

Although I have two nieces and two nephews who inspire me, my 15-year-old niece Michelle has a special place in my migraine world because she, too, has migraine and has had chronic daily headache since she was 11. Since she was very young, our similarities in appearance and personality have been obvious. I am honored to have those traits in common, but was devastated to learn we also share headache disorders. I cannot give up my fight to live well despite chronic migraine and chronic daily headache because I refuse to show Michelle that giving up is an option.

I don’t know what my niece’s path with migraine and headache will look like, but I will be here to guide her. I will not only tell her, but will also show her that the daily struggle is beautiful and worthwhile. I will also continue to advocate to advance the scientific knowledge and treatment of migraine and headache disorders. She is worth it. I am worth it, too.

Who inspires you?

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger’s Challenge is initiated by Fighting Headache Disorders.