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...

***

Migraineroes!!!!

***

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

I am one, are you?

Sum… Sum… Summertime Migrain...

My summertime survival skills for migraine –

I think they are very much the same as my survival skills for the rest of the year:

Shady lady (me) waiting for bus in BA, so s l o w I'm stopped.

-try to get regular sleep,
-eat healthy and regularly (easier in the summer with all the fresh veggies, berries and such),
-drink lots of water,
-exercise when and as much as possible,
-try not to stress or get too emotional over stuff,
-try not to get too much sun, always sunglasses,
-don’t overexert or overextend myself,
-try not to take too much medication,
-don’t enjoy any yummy summer cocktails or wine
-try to relax anyway
-deny migraine,
-accept migraine,
-get depressed,
-get encouraged,
-make up my mind to go with the flow,
-and cope in whatever way possible –

Hmmm… doesn’t this kind of sound like, ” Try not to live too much”?

Seriously, in the summer and particularly in extremely hot and humid weather I just slow down.

Literally. In every way.

Really.

I     Slow     down.

Walk…      S l o w e r.

Never       Run.

Breathe…       S l o w e r.

Talk…      S l o w e r.

Think…

S l o w e r…

E v e r y t h i n g    in      S  l  o  w      M  o  t  i  o  n.

Breathe…

More…

A n d        S l o w e r…

Everything…        quieter…

s l o w e r …         s h h h…        s   l   o   w   e   r .  .  .

This post is part of the July 2011 edition of the Headache and Migraine Disease Blog Carnival at Somebody Heal Me for which the theme is “Summertime Survival Skills for Migraineurs.” Thanks, Diana!

Was it the food?...

“What frustrates you most about living with migraine disease?”

I’m not at all sure I can choose one most frustrating aspect of migraine.

Around and around and around I go - Carousel at Buenos Aires Zoo ©2011

Is it all the time I have lost from life, family, and friends over the years? I guess I would say no — that is the saddest part.

Is it all the things I could/might have done without migraines? Well, that part is mostly infuriating.

Is it the fact that migraine has been so misunderstood, under-researched and under-treated? Or that migraineurs have been misunderstood and mistreated? Hmm… that would rank right up there — with most sad and infuriating!

Is it the pain and sickness? I don’t think so, although the bodily symptoms are surely the most excruciating, debilitating and physically draining.

No, what frustrates me most about living with migraine has to be not what I feel, know, or can measure and learn about it, but rather that which is unknown. All the stuff we don’t know. (more…)

La Migraña!...

On the topic of this month’s Headache and Migraine Disease Blog Carnival, “Life Hacks: Tweaking Work & Life to Deal with Migraines,” hosted by Emily at No Extended Warranty…

Once again I am laughing at myself and my life. You might say I’ve done some major tweaking lately.

I haven’t intentionally changed anything over the last year and a half to deal with my migraines, but my life has taken dramatic turns on some crazy roads. And it’s amazing the way the migraines have hung right in here, taunting me mile after mile.

Street Scene in La Boca, Buenos Aires ©2011

At this time, I am in Buenos Aires(!) in the middle of a living experience – an extended visit to work, explore, study Spanish, and generally see what living life is in Buenos Aires. Coming here has been on my husband’s adventure list for a long time, we can both work remotely via the Internet, so here we are.

My migraines are here, too. (more…)

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…)

Have hobbies helped me cope with migrain...

I am laughing at myself because I’m tempted to make this post one word:  “NO”

Still Standing (c)2010

During my migraine years, debilitating attacks have often not only prevented me from pursuing or enjoying hobbies but also from simply engaging in everyday, normal activities!

I most wanted to spend any time not  in migraine hell with my family, enjoying my children, or needed to spend that time and energy at work, on chores, and doing regular life stuff.

Many of the activities I enjoy — reading, writing, music, art, hiking, tennis, travel, photography — are severely and negatively impacted by migraine pain and illness. Once I crocheted snowflakes for Christmas gifts and remember bawling while trying to concentrate on the stitches through the pain. I recall taking college courses and struggling to memorize material for exams through blinding migraine pain. (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