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Migraine Awareness Month 29: "More Often than Not."

AwarenessMonth2012BC2Good morning, and welcome to day 29 of National Migraine Awareness Month!

Today's prompt for the Awareness Month blog challenge is:

Migraine Awareness Month #29: "More Often Than Not."
Today is Chronic Migraine Awareness Day. Think of and share a random act of kindness that you could do for someone with chronic Migraine.

First for anyone who may not understand what chronic Migraine is, let me explain:

As defined in the International Headache Society's International Classification of Headache Disorders, Second Edition (ICHD-II), which is the gold standard for diagnosing and classifying Migraine and other headache disorders, chronic Migraine is Migraine or tension-type headache 15 or more days per month with at least eight of those being Migraine. In other words, people with chronic Migraine are in pain more often than not. Some people actually have a Migraine or headache every day. You can read more about chronic Migraine in Chronic Migraine - What Is It?

Now, on to the challenge. There are several "random" acts I can think of that could be quite helpful to someone with chronic Migraine. For the chronic Migraineur in your life, I'd suggest choosing one that best fits their life:

  • If they live alone, they may get lonely, especially because they may seldom feel like getting out. Give them a call and see if they feel like having a visitor. If they do, offer to bring lunch with you and spend some time with them. As if there are any errands you can run for them before or after your visit. Be sure to ask about what to bring for lunch, not just so you bring something they like, but also to avoid any food that might be Migraine triggers for them.
  • If they have a family, fixing dinner may be an issue for them. Offer to bring a home-cooked meal for them and their family. Again, check to see what foods are good. Pack everything into a basket or box, including disposable plastic plates and utensils so there are no dishes to be washed.
  • Do you have friends with chronic Migraines who have kids? Offer to pick them up from school? During the summer, offer to take the kids for an afternoon or a day.
  • Call a friend with chronic Migraine and just ask how they're doing and what they're doing that day. See if they need anything, want any errands run, or if there's anything at all you can do for them.
  • Call a friend with chronic Migraine and tell them you'd like to learn more about their Migraines and what you, as their friend, can do to help them. It will mean so much to them that you'll be totally amazed!

ChronicMigraineButtonToday is Chronic Migraine Awareness Day! Please take a bit of time today to do something for someone with chronic Migraine. If you've never lived with having that kind of pain more days than not, it's hard to imagine living that way. It's not just the pain and other symptoms. It really wears a person down, saps a person's strength and hope. A small gesture from a friend can go a long way toward restoring that hope.

Live well,

PurpleRibbonTiny
 

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Get the latest Migraine and headache news, informational articles, tips for living well, and more in my free weekly newsletter. To subscribe, CLICK HERE.

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© Teri Robert, 2012
Last updated June 29, 2012.


Migraine Awareness Month 26: "From The Outside Looking In"

AwarenessMonth2012BC2Good morning, and welcome to day 26 of National Migraine Awareness Month!

Today's prompt for the Awareness Month blog challenge is:

Migraine Awareness Month #26: "From The Outside Looking In."
Write about what you think your family, friends and others think a day in life, a day with Migraine disease is like.

From the outside looking in...

Most of my family and friends are only vaguely aware of my job as a patient educator and advocate.  It might surprise you to know that the majority of them don’t even know where I work other than ‘online’. 

I have never asked them what they think my days are like, but they occasionally give me a little insight with the things they say.

Sadly, some of my friends think that I spend all day long visiting Dr Google, obsessing over my health conditions.  In reality this couldn’t be further from the truth.  Most of my time is spent either writing, or helping other patients online.  Most of these people think that spending time online must make me feel worse, when in reality the opposite is true.  Helping others gives me purpose and keeps me concentrating on everything but my pain, so I can often be found even working while in bed in the dark, iPad on my lap.  I stop for the day only when a Migraine is completely out of control. 

A few relatives think I waste my time each day in front of a television eating bonbons.  I wouldn’t know a bonbon if it stood up and introduced itself to me.  Although a radio or the television is often on for background noise to drown out my tinnitus (ringing ears) I rarely watch TV unless I happen to be passing through the room at an especially interesting time.  I average approximately 12 hrs a day working as an educator/advocate.  It’s true that part of this time is my job.  However, the vast majority of it is volunteer.  Patients are my priority.  Even with those numbers, I still feel that I let some patients down because there just aren’t enough hours in the day.  I do my best and hope they see that.

A few friends and relatives think I waste my time on useless or frivolous sights such as Facebook and they see no purpose in it.  The reality is that I visit many online social media platforms, participating in too many of them to really count.  Sometimes I ask questions myself because I am always learning, but usually my time is spent helping others who are asking questions or looking for support.  I also keep in touch with other patients through these social media platforms, and we are often found sharing prayer requests and comfort for each other.  Hardly a waste of time in my book. 

I take my meds when I’m supposed to.  I distract myself from my pain every day.  I take out a little time each day to concentrate on things that cause me to pause with wonder and smile.  I enjoy the time I spend with my dogs and cat, and although my heart aches for the interaction, I enjoy watching the daily activities of the horses that surround my home.  I plan to go somewhere at least once a week because this makes me feel like my life is a little more regular.  I struggle to be as normal as I possibly can, with a very *not normal* situation. 

It’s my fault that my family and friends aren’t more aware of how I spend my days as a Migraineur because I could just talk about what I do and how I spend my time, but nobody is asking questions and I don’t feel the need to sit them down and bore them with the details.  I think they don’t ask questions because the reality is that they don’t want to know the answers.  They know I live in pain and that makes them feel uncomfortable.  They don’t know how to talk to me anymore.  Mostly, they are uninterested and busy with their own lives.  That happens with all of us from time to time.

My hubs and kids know how I spend my time because they live (or used to) with me each day.  My kids are Migraineurs too, so they understand from that perspective.  My world became very small when I got sick and that’s okay.  It’s okay that they are the only ones who “get me”  because they are the ones who matter most.  And the most important part of this equation is I am blessed that they DO understand and know me, and I am not alone.

 

~Ellen


Migraine Awareness Month 23: "Carpe Diem, You Betcha!"

AwarenessMonth2012BC2Good morning, and welcome to day 23 of National Migraine Awareness Month!

Today's prompt for the Awareness Month blog challenge is:

Migraine Awareness Month #23: "Carpe Diem, You Betcha!"
Tell us about a time when you truly seized the day.

This isn't the "regular" prompt for the day. I chose to use one of the three substitute prompts today.

It's hard to "seize the day" when you have a Migraine, but theres an emergency room experience I want to share that anyone with Migraines will be able to appreciate...

 It was one of those times when the vomiting was worse than the headache, and it went on and on and on. When I called my doctor, he told me to go to the emergency room, so off I went. Now, I want to preface my remarks by saying that our hospital emergency room has, with the exception of this visit, always given me exceptionally good care. I don't know what was going on this day, but wow!

The nurse led me back to an exam room and turned off most of the lights. When the doctor came in, he turned the lights back on, and came in talking very loudly. Next he moved the little basin that was sitting on the table in front of me and put my chart on the table.  A couple of minutes later, I told him I was going to vomit and needed the basin. His response was, "No you're not. It's mind over matter."

I repeated that I was going to vomit. The doctor ignored me. My husband rolled his eyes and took several big steps back from me. I didn't have time to tell him a third time, but I did have time to aim. It did run through my mind that he could get clean scrubs, but probably didn't have extra shoes, so... I took aim... and vomited on the doctor's shoes. He quickly handed me the basin and left. He never did come back. A nurse came in with some medications and turned off most of the lights again. She said that she understood that Dr. X and I "had a little accident," then laughed and patted my hand. She told me that a "few accidents like that wouldn't do  the man a bit of harm."

I did see him walking down the hall with just socks on his feet. Now, far be it from me to put anyone up to any mischief, but if you happen to need to vomit, and the person taking care of you isn't listening, it might be worth taking into consideration that there are usually extra clothes in hospitals, but extra shoes? Not so likely.

Live well,

PurpleRibbonTiny
 

Puz-only-btn

Get the latest Migraine and headache news, informational articles, tips for living well, and more in my free weekly newsletter. To subscribe, CLICK HERE.

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© Teri Robert, 2012
Last updated June 23, 2012.


Migraine Awareness Month 17: Father Knows Best

MomAndDad166Good evening, and welcome to day 17 of National Migraine Awareness Month!

The prompt for the Migraine Awareness Month blog challenge for today is:

Migraine Awareness Month #17: "Father Knows Best."
Some understand Migraines; some don't. Write a letter to your father or the man closes to you, and talk about your Migraines.

I was going to skip this one because my father died in 1987, but I decided to go ahead and write it anyway because my father had so much to do with who I am today...

Dear Daddy,

Today, I'm working on several things, trying to wrap up work so I can go to Los Angeles this week to attend an American Headache Society conference. Who would have guessed all those years ago when I started having Migraines that I'd end up working to help other people learn about them and live with them? That's what I do now, and I'm going to the conference so I can learn more and network with doctors who are experts in the field and other patient educators and advocates.

It's Father's Day today, so it's really fitting to say "Thank you" for this work that I do, this "calling." Whenever someone thanks me for helping them, you deserve that thanks. You were the one who sat outside my closet and held my hand or stayed in the bathroom and held my hair back while I vomited. You were the one who gave me shots of I don't even know what when they were really bad.

Putting Migraines aside, Daddy, you were also the one who told me I could do anything I wanted to with my life and taught me to stand up for myself. I don't know where I'd be today if you hadn't taught me those lessons.

My Migraines have made my life a living hell at times, but they've made me stronger too. John takes care of me, like you did. He drove me eight hours, each direction for appointments with Dr. Young in Philadelphia several times a year for several years until Dr. Young helped me get the Migraines controlled. You'd have been so proud of him. Now I have a doctor in Morgantown, so we don't have to go so far, and you know I can't go to Morgantown without thinking of you.

I love you and miss you, Daddy. Thank you for helping me with my Migraines, and thank you for helping me to be a stronger person and knowing how to stand up for myself. Those lessons were key to surviving chronic Migraines. If I've managed to pass on a fraction as much wisdom to our boys, I'll have been a success as a parent.

Live well,

PurpleRibbonTiny
 

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Get the latest Migraine and headache news, informational articles, tips for living well, and more in my free weekly newsletter. To subscribe, CLICK HERE.

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© Teri Robert, 2012
Last updated June 17, 2012.


Migraine Awareness Month Blogging Challenge #16: "Lead, follow, or get out of the way."

AwarenessMonth2012BC2

Today's prompt is:

Migraine Awareness Month Blogging Challenge #16: "Lead, follow, or get out of the way."  Which role fits you and why?

Although I would prefer that none of these three categories exist and we all work equally within a community, I have found that in practice, it rarely works this way.  Those who know me often hear me say “The cream eventually rises to the top.”  Given enough time, every community member finds the spot he/she is most comfortable. 

 As a result, two of these categories fit me I’m afraid – Lead, and Follow.  Although I’m not much of a get out of the way anymore, I do like to be an Indian when I can, so from that perspective I even fit *get out of the way*.

As a kid, I was the painfully shy, quiet one that didn’t want to stick out.  I loved being a get out of the way'er because there was less stress and it was easier to blend in that role.  When in grade school, I began doing art work that was getting noticed.  It was hard to stay in that get out of the way role after that, no matter how hard I tried.

By the time I was giving riding lessons and training horses, I had left the get out of the way role behind.  Get out of the way's don’t make good teachers, and they make lousy animal trainers.  Although that was where I was most comfortable, it wasn’t really where I belonged anymore.  It took a long time to come to terms with that and learn how to be comfortable as a leader.

When I first began helping other patients, I wanted to be a get out of the way'er.  I wanted to blend in and I stayed anonymous for a very long time trying to do that.  However, because I had so many personal experiences to share, I ended up often finding myself in leadership roles in my online communities, despite my best efforts.  I just couldn’t stand by watching people suffer when I had some of the answers to their questions and problems, and those skills to be a leader. 

Despite the fact that every one of these roles is vitally important to a community, it’s hard being in leadership roles! 

In the animal kingdom, most groups function on a hierarchal principle.  Typically there are alphas (leaders) and the leader’s best friends or number two’s (followers).  Then there is everyone else (get out of the way'ers).  Among the *everyone else* group there will be constant jockeying for higher positions and better status, because in the animal kingdom, this means a better chance at survival. 

Every once in a while, someone wants the leadership position and starts a fight to get it.  This is understandable in animal societies, but I like to think that in human society, with our ability to communicate verbally and work together with purpose and forethought, this jockeying for position should be unnecessary.

I have never felt that, in an ideal world, online communities should be run this way – we are all patients and all have similar experiences to share.  We gain or lose as a group depending on whether our groups are successful in what they are trying to accomplish.  The bottom line is, we are all valuable, and every time someone leaves a community, we are all the poorer for it.  There are all times when we should be leaders, followers, and times when we need to be getting out of the way so we can get things done. 

Have you stepped up into a leadership role within the Migraine community?  Do you consider yourself someone who is more comfortable following, or do you participate actively and the *get out of my way* position fits you best?  How do you think you would feel if you were thrust into another position?  Why?  We hope you'll let us know in your comments below...

~Ellen

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com.

To help raise awareness about Migraine, please Tweet this post with the hash tags #NMAM and #NMAMBC and share it on your Facebook page. Thank you!

 


Migraine Awareness Month 15: We're Like Pennies

AwarenessMonth2012BC2Good afternoon, and welcome to day 15 of National Migraine Awareness Month!

Today's prompt for the Migraine Awareness Month blog challenge is:

Migraine Awareness Month #15: Free Blog!
Blog on a Migraine related topic of your choice.

I like this one! My topic will seem a bit strange to you at first, so please bear with me...

I want to talk about how people are like pennies. Yes, pennies.

See, I told you it would seem a bit strange. Allow me to explain...

I spent about 10 years after my divorce living single, alone, and working a job that didn't pay all that well, and no health insurance. One of my biggest frustrations was that I love, love, love to give presents, especially at Christmas, but there wasn't a lot of money during that period of time. What I decided to do was keep a big jar in my closet, and when I came in every evening, take the change out of my purse and put it in the jar. No matter what happened, I never touched that change until time for Christmas shopping. I was always truly amazed at how much a few cents here and a few cents there added up to.

Are you starting to see where I'm going? People and advocacy efforts are much like pennies in a jar. It's all cumulative. Every person one of us can educate about Migraine disease is one less person out there who "doesn't get it," who thinks Migraines are "just bad headaches," who gives us a hard time at work or doesn't understand why the chronic Migraineur next door hasn't left their house for six months, who feeds the stigma associated with Migraine. One less. And one more who can help spread the word. One more. And just like that change in my jar, it's amazing how quickly all of those people can add up.

AwarenessMonthContest166So, here's the question - How do we do that? How does that chronic Migraineur I just referred to who hasn't been able to leave her or his house for the last six months do that?

If we use our imaginations and creativity, we CAN answer that question. One of my goals for Migraine Awareness Month is go put together a list of some ways individuals can help raise awareness even if they're not well, ways that cost little or nothing. To do that, I'm having a contest on the HealthCentral Migraine community site. One of our readers there has already give us a great suggestion that I'll share with you here as an example of what I'm looking for:

How about changing our phone answering messages to include something brief and upbeat about June being Migraine Awareness Month? Something like,

"Hi, this is MJ, I'm out spreading the news that June is Migraine Awareness Month, but I'll get back to you soon, so leave me a message!"

Or, "Hi, this is MJ. It's June 14 and I'm inviting you to wear a purple ribbon along with me in support Migraine Awareness Month. Leave me a message!"

AwarenessContestPrizesTo enter the contest for a chance to win the prize package on the right, go to Enter Our Migraine Awareness Month Contest!

Live well,

PurpleRibbonTiny
 

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Get the latest Migraine and headache news, informational articles, tips for living well, and more in my free weekly newsletter. To subscribe, CLICK HERE.

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Page copy protected against web site content infringement by Copyscape

© Teri Robert, 2012
Last updated June 15, 2012.


Migraine Awareness Month #12 "Let's Do The Monster Mash!"

AwarenessMonth2012BC2Today's prompt for the National Migraine Awareness Month is: 

Migraine Awareness Month #12 "Let's Do The Monster Mash!" Choose a movie monster that reminds you of your Migraines and tell us why.

While the song "The Monster Mash" is fun to listen and dance to, when I think of my Migraines I think of something more sinister. 

I call them The Beast

There are a lot of reasons why, but because I tend to think about them that way makes this post an easy one for me.  Two 1980's movie monsters together fit the bill here...

1.   Kurt Russell stars in an old creature feature called "The Thing".  In this horror flick, Mr. Russell's character is in an isolated Antarctic research facility when a friendly dog infected with an alien life form is chased into their compound.  The alien life form has taken over the dog, cell by cell replicating it and it actually only appears to be a dog.  When the dog is alone with the facility's other sled dogs, it begins killing and replicating the bodies of the dogs.  Soon, one by one, the life form perfectly takes over members of the crew.  No one trusts anyone, and for good reason.

When a Migraine is hitting me, I feel like that life form has taken me over.  I have to try very hard to remember who I am and act like me instead of acting out like my head and body makes me want to.  I don't want to attack those who are closest to me.  I don't want to hurt them.  But the nature of the beast in my brain makes controlling this really tough.

2.   The movie monster I think overall represents my Migraine beast the most comes from a series of movies that began with the film "Alien" starring Sigourney Weaver. 

If you're one of the 10 people on earth that haven't seen one of these, in this film the crew of a space ship goes to an asteroid and finds a large ship filled with eggs.  When a crew member comes near, the egg opens and a "face hugger" leaps out and attaches itself to his helmet. When he is found, the face hugger has used acid and eaten its way through the mask and has tightly attached itself to the crewman's face and neck.  It is planting an alien larvae down the throat and in the crewmember's stomach.   While at dinner, the matured larvae grows and while the crew holds the crew member, down it bursts out of his torso, killing him in agony.

Put one of these things inside my head, and you've about got what a Migraine feels like - something alive and pissed off and completely beyond my control is inside my brain trying to violently split my head open to come bursting out near my eye.

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com.

To help raise awareness about Migraine, please Tweet this post with the hash tags #NMAM and #NMAMBC and share it on your Facebook page. Thank you!

Ellen


Migraine Poetry Contest Winners Announced

Poetry2012-300Just in time for National Migraine Awareness Month, I'm pleased to announce the winners of the 2012 Putting Our Heads Together Migraine and Headache Poetry Contest.

This year Dr. Seymour Diamond and The Migraine Research Foundation joined me in judging the contest. Reading the entries was pure pleasure. Choosing winners from them was anything but pleasure because they were all so good and all were deserving of winning, making choosing winners excrutiatingly difficult.

Before I disclose the winners I'd like to extend our sincere thanks and congratulations to everyone who entered.

Now, without further ado...

First Place:
A Picture of Pain by Bear Peterson

I tried to paint a picture,
Of how I really feel.
But I could not find the colors,
To make it all seem real.
Not one color was hot enough,
To show the burning pain.
Not one color bright enough,
To make me wince again.
Not one was dark enough,
To show the isolation.
In the end saw one thin line,
Worn, frayed and almost broke,
To my mind that one thin line,
Is a single thread of hope.

 

Second Place:
Heading to Me - Ow by Jamie

If
this isn't an aura,
then
my cat
went on a diet.

'cause

I can only see
half
of him
and
he's thin.


Third Place:
Power Play by Laura K. Patterson

He's nine, brimming happiness
the afternoon is ours,
destination Power Play.
Through doors, darkness illuminates
attractions glowing, strobing invitation.

Weaving among shrieking children,
he practically runs, I follow
confusion taking over my senses,
flashing arcade games,
jarring bumper cars,
pulsating laser tag,
teetering rope walk.
Ceiling spins, carpet dances,
step becomes less sure.

You arrive, finally
ending tease to stay away,
not confiscate our afternoon,
char memories of a son's delight.
Your camera after-flashes
skip along edges of my vision,
soon consume without boundary,
bind a sickness to my throat,
begging urge to hollow my stomach,
protect my head from your entire grip.

I sort through the flutter of your torment,
find a bench, close my eyes,
press my face into cold hands,
powerless.

"Go on ahead," I say to him.
"Maybe later."


Fourth Place:
In All the Years by STM

Fifth Place:
Alice in Migraine Land by Sheri L. Tardio

 

Honorable Mention:

Dinner and a Movie by Eric Segaard

Headache Haiku by Janet Mills

Invisible Illness (My Wife) by David M. Chappell

Making Just Enough Room and No More by Pamela Hall

Migraine Life by Sara A. Borders

Migraine Trap by Tina J. Bembry

A Natural Progression by Paula J. Algers

On the Verge by Lisa Robin Bension

 and

ALL entries from the contest

I hope you'll take some time to read this year's poetry and share it with others. It's truly magnificent.

To Dr. Diamond at the National Headache Foundation and Cathy Glaser at the Migraine Research Foundation, thank you for helping with judging the poetry. It's greatly appreciated!

We'll start accepting entries for our 2013 contest in April, 2013, so we can announce next year's contest winners during National Migraine Awareness Month 2013.

Live well,

PurpleRibbonTiny
 

Puz-only-btn

Get the latest Migraine and headache news, informational articles, tips for living well, and more in my free weekly newsletter. To subscribe, CLICK HERE.

Follow me on    or 

 

Page copy protected against web site content infringement by Copyscape

© Teri Robert, 2012
Last updated June 11, 2012.