Just do it for Migraine!...

During the last three years, no matter where I have been or am in my crazy life, I strive to keep up with migraine news and pass along information and activities for us as migraineroes and our loved ones. I’ve found myself more active on facebook and Twitter recently simply because they’re quicker. But some important share items require more than 140 characters or a brief wall post.

Help lift the clouds over migraine - sign the Petition please, photo ©2012

First, if you and your family and friends have not yet signed the AHDA’s (Alliance for Headache Disorders Advocacy) petition for Congressional hearings on migraine and other headache disorders, please, please, please do so now. The deadline is March 27 and the goal is a modest 20,000 signatures — a small number considering an estimated 36 million people in the U.S. alone have migraine.

Teri Robert has created FAQs about the petition, but there should be no questions — it is brief, simple, and takes very little time to do. Congressional hearings could further all the efforts of migraine advocacy — understanding, additional research and improved treatments for migraine. So please, just do it. And then ask all your friends and family to do it, too.

Secondly, I wanted to re-list current and some new sites and migraine groups (more are on the resources page of this blog) in case you haven’t seen them, want to share with others, or are able at any time to donate dollars (every little bit helps):

Teri Robert is active as ever on Health Central’s Migraine Connection, various blogs listed here … and has started a new blog with a spiritual slant with another wonderful migraine and health advocate, Ellen Schnakenberg.

You can open the door to migraine information and support and be proactive, photo ©2012

The Migraine Research Foundation always offers reliable information while making great strides in migraine research. Donate if and when you can.

Migraine.com has a great group of writers and is amassing a ton of good information.

The Migraine Project — yes, a documentary film about migraine in the making!

WEGO Health for migraine and health activists, advocates and bloggers.

ubiqi health- this is not an endorsement because I haven’t tried their migraine tracker, but if you’re a digital buff, you might want to check it out.

I still rely on the information provided by Diana Lee at SomebodyHealMe and James at  Headache & Migraine News Blog. There are also some great facebook pages and new migraine blogs, so please contact me with any I can add to my blog list here (I know I’m missing many), check my resources page, and connect with migraine participants on facebook and Twitter if you’re active there. Many helpful resources are out there for you.

Now go sign the petition — please and thank you!

I still remember…...

"Sleep" by Nick Beery ©2007, published in Migraine Expressions

I still remember what I later recognized as my first migraine attack. I was 16 years old, spending a couple of weeks with my family at my aunt’s winter mobile home in Bradenton, Florida. Only it was summer and it was hot.

Blinding head pain – I had never felt anything like it before – and feeling sick to my stomach sent me to the little bedroom to lie down. And there I suffered in silence, which I continued to do during migraine attacks for too many years.

I’m sure my mother asked me what was wrong and tried to help, but I don’t recall many other details of the day. I do remember being frightened but thinking it was the flu or the smothering heat and humidity.

What I recall about my early migraine years are intense but infrequent attacks that I could usually sleep away. The more severe migraine vampires that have sucked life out of me for so many years started visiting in my early 20s.

But with all that has passed, I have not forgotten the day and the event that began my monumental migraine journey…

**This post is part of The Health Activist Writer’s Month Challenge at WegoHealth
There is a prompt for every day of November, and on this, the 26th day, I finally posted!

New name for migraine people...

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Migraineroes!!!!

***

Migraine + Heroes = Migraineroes (mi-grun-e-roz)

I am one, are you?

Stigma of migraine and taking charge...

Amid the current discussion about the stigma of migraine disease and finding ways to overcome it, I consider the obnoxious metaphors and media references to migraine I’ve heard or read. Here’s one: “If you thought traveling over Interstate 90 last fall was a pain, get ready for a month long migraine.”  Most likely you have your favorites, too, references that trivialize and would not be made to other serious diseases.

No more MOH!

But my focus for this post is on a term used in the medical field and migraine community that I find just as irritating – “Medication Overuse Headache (MOH).” I’m sure whoever coined this label for previously termed “rebound” migraines/headaches didn’t mean to offend anyone. It’s a simple phrase describing migraines/headaches that return or rebound once a medication dose wears off and your body tells you it needs more. (Not a medical definition, just the way I think of it.) Teri Robert has an excellent article here.

This becomes a vicious cycle of chronic migraines or headaches until you manage to break the cycle of pain – medication – pain again – medication again – pain again, and so on. I went through this process of withdrawal a year and a half ago. (more…)

Grateful in spite of migraine disease...

The theme of November 2010 Headache and Migraine Disease Blog Carnival at Somebody Heal Me is: “What are you thankful for despite living with migraine disease?”

Near Cross Creek, FL (c)2010

Absolutely and of course I am grateful for my family, my husband and children, my birth-extended family, and my husband’s family. Without all the family love and support I am so fortunate to have, I cannot begin to imagine how different my life would be. Then there are friends, those who have touched my life briefly and those who have stayed a lifetime, for which I am thankful.

My daughters took a happiness course in college, and one of the ways to feel happier is to keep a gratefulness journal, each day recording five things you are grateful for. This I did for a brief time on paper, and I still try to make mental note of at least one thing I’m grateful for every day. (more…)

Five Tips for Those Newly Diagnosed with...

Posted for WEGO Health’s September Blog Carnival — Back to school: ABCs for the newly diagnosed: Migraine Disease

Just five tips? Okay, but I could probably list a tip for most letters of the alphabet. Once you’ve seen a competent physician and been diagnosed with Migraine:

A – Always be an enthusiastic student: research migraine, read everything you get your eyes on, weed out the crap, find the facts, and try to understand the disease and your own brain-body system.

B – Be patient with yourself and others; you won’t accomplish the (A) assignments overnight, and it will take even longer for your friends and loved ones to begin to understand. Be kind to yourself when you’re not well and don’t push it or feel guilty about limitations.

C – Care for yourself and be an effective partner with your health care professionals to determine the best course of action for you. Everyone is different, there is no cure for migraine disease, and finding your best management approach takes time and more patience. But there is hope and help, and we have more research and additional methods of treatment all the time!

D – Do try to let others know when you’re having a migraine attack, how you feel, and if and or how they can help you.

E – Eat nutritiously (avoid food triggers once you determine yours), try to sleep regularly and Exercise whenever or however you are able to.

I know, this is actually more than five tips. After my 40 years of migraine disease, these are only a few of the things that have been helpful to me – lessons that have taken me years to learn. Those newly diagnosed with migraine have an advantage over me and other migraine veterans, and that is the abundance of information, resources, and treatment options now available. I hope you tap into them and take care of yourself.

This post is my September entry in the Health Activist Blog Carnival. If you’re interested in participating, you can read all about it here: http://blog.wegohealth.com/2010/09/new-health-activist-blog-carnival-back.html

Migraine and pain activism in September!...

Fall in Boston

A shout out to all migraine and pain bloggers, readers and activists: here are a few easy and meaningful activities this month!

Today, 9/8, is International Literacy Day; check it out, be aware of literacy status worldwide… and read to someone or help someone learn to read!

It’s Migraine Awareness Week in the UK, and Teri Robert reminds us why it matters! You can always help raise awareness.

September 10 is World Suicide Prevention Day; Nancy Harris Bonk discusses and Diana Lee displays the National Suicide Depression Hotline. What can you do?

Invisible Illness Week this year is 9/13 – 9/19 and everyone can get on board with this one! Each One can Reach One. And you can. Lots of great ideas here, and my favorite is to leave little notes wherever you can letting people know that if they are in pain, they are not alone. How cool is that?

The whole month of September is American Pain Foundation’s Virtual March on Washington for Better Pain Management. Ellen S describes the event and provides the link for you to join the effort and add your voice!

The Migraine and Research Foundation can always put donations of any size to good use, and even if you can’t donate right now, you can access great resources on the MRF site!

These are quick and easy things to do during a busy September, so pick something you can do — and DO IT!

Express Migraine to Congress!...

Our ‘Express Migraine to Congress!’ campaign is launched at the wonderful suggestion of Vicki Gewe!

Vicki sent a book to Tom Harkin (D-IA), Chairman of the Senate HELP Committee, and I sent a copy to each of my senators, Barbara Boxer and Dianne Feinstein. Seven books are on their way to Congress now!

AND for every book sold in this effort, we will donate $1 to the Alliance for Headache Disorders Advocacy. You can make a dual impact with your purchase.

Anyone can purchase a book for Congress to promote awareness and migraine research here: http://www.wordmetropress.com/congress.html. Simply make a note in the PayPal purchase form which Senator or Representative you would like to receive your book. (more…)

Invisible Chronic Illness Awareness Week...

Shared by Teri Robert (thank you) – and completed by me:

30 Things About My Invisible Illness, Migraine

Anyone who has Migraine disease or another headache disorder knows what it’s like to live with an invisible illness. People can’t see our illness. There are no outward signs. Invisible illnesses are easy for “healthy” people to ignore. This adds to the burden of disease and makes lives even more difficult.

Each year, National Invisible Chronic Illness Awareness Week is observed to educate the public and raise awareness about invisible illnesses. One of the blogging activities this year is a “meme,” 30 Things About My Invisible Illness You May Not Know. So, here’s my meme… (more…)

yes, we still need ‘painful’...

Imah Widai

I’m Mad as Hell and What I’m Doing About It…

Yes, we still need painful and frightening migraine art

…and everything else possible to help the migraine awareness effort!

Well, National Headache Awareness Week (June 7-13) is reaching its end, but our efforts to promote awareness and understanding while advocating for more research and better treatments must go on!

Dedicated migraine professionals, advocates and overcomers are leading the charge online with excellent, informative migraine and headache sites, providing support and sharing knowledge and experiences. Some can be found on this blog under Resources and more will be added here soon. (more…)