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


Migraine Awareness Month #5: "Do That To Me One More Time."

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

Migraine Awareness Month #5  What comfort measure do you find helps you enough during a Migraine that you go back to it again and again, and how do you use it?

My go-to comfort item that gets me through Migraine attack after Migraine attack, is my heating pad.

I have often joked that my heating pad needs a name, because I cuddle with it more than my husband.  (Sadly, hubs agrees with me, lol) It goes nearly everywhere with me.

When I asked my doctors why heat is so helpful to me, nobody seems to have an answer.  Since I tend to suffer from inflammation one would think heat might aggravate the situation.  However, when I’m in pain I do tend to find it difficult to argue with success.

Placement of my heating buddy has everything to do with its success. 

In my case, I get a pain trifecta: Migraine (usually my left side) with extreme pain behind my eye, and trigeminal neuralgia that shoots across my face, eyeball and inside my ear like lightning while at the same time throbbing like the worst tooth/face ache you can imagine, radiating down the front of the left side of my neck.

I usually put my heating pad directly onto my face, even putting it over my pillow so I can lay on it, pain side down.  If tension is a problem in my neck, I have the larger sized pad that easily wraps around the back of my head for comfort there as well.

Thankfully it turns off automatically and I have never suffered any burns from it, however I do know of someone in the Migraine community at large that had an old model without the automatic shut off.  She took her meds, fell asleep on it and woke up with 3rd degree burns. 

There are times when even my heating pad isn’t sufficient.  I usually retreat into my hot pounding shower then.  I’m never quite sure if it is the heat itself that is so soothing, or the distraction of the hot pounding water over my bruised body that seems to help.  (Hurts so good?) Again, it’s tough to argue with success.  At the very least, the cooling down process after the shower allows my body to relax and sometimes fall asleep (often with my heating buddy wrapped comfortably around my face and head) when intense pain of an especially brutal attack usually makes rest impossible.

Do you find heat or cold to be more comfortable during an attack?  Do you find that changes from one Migraine attack to another?

What is your favorite comfort item?

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


PicBadges Migraine Ribbon Confusion

Awareness166As you may know, it was announced recently that Migraine and other headache disorders finally have an "official" awareness color - purple. (See Migraine and Headache Awareness Go Purple.) That means that purple can stand for any headache disorder...

  • Migraine with aura,
  • Migraine without aura,
  • basilar-type Migraine,
  • hemiplegic Migraine,
  • any other form of Migraine,
  • cluster headaches,
  • tension-type headaches,
  • chronic daily headache,
  • new daily persistent headache,
  • etc.

After the announcement of our color, one of the things I did on Facebook was set up a purple ribbon that people could add to their profile pictures via PicBadges. Check out our purple ribbon on PicBadges. It's a basic, plain, royal purple ribbon that can be used to raise awareness of any form of Migraine or any other headache disorder.

There is also a purple ribbon with a red stripe on PicBadges, set up by Cat Charrett-Dykes, that represents chronic Migraine. Cat has worked very hard on raising awareness of chronic Migraine, and it is important to her that people know the difference between the two ribbons.

So, for those of you who have been emailing me and asking, that's the difference between the two. The plain purple represents ALL Migraine and headache. The purple with the red stripe represents CHRONIC Migraine. To answer another question, yes, you can put more than one PicBadge on your Facebook profile picture. When you're on PicBadges and click to add the badge, just arrange them so they don't cover each other.

To answer one more question from my email - No, pediatric Migraine is not a specific form of Migraine. Children can have the same forms of Migraine that adults can have. I understand that there is now a PicBadge for "Pediatric Migraine," but that's referring to an age group, not a form of Migraine.

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 April 5, 2012.


Migraine and Headache Awareness Go Purple!

Migraine-AwarenessDuring the time I've been working as a patient educator and advocate in the area of Migraine and other headache disorders, one thing we've all been asking for is an awareness color. Breast cancer has pink; HIV/AIDS has red; and so on. But we've never had an "official color."

UNTIL NOW!

One of the problems is that there are several nonprofit organizations for Migraine and headache, some of them on pretty equal footing, so nobody could really make the decision. So, since I work with all of those organizations, I talked with representatives from them, and the good news is that we now have an "official" color. Looking at this post makes it pretty obvious that the color is purple. There were two primary reasons for going with purple:

  • In 2004, a group of Migraineurs did an awareness project selling purple silicone wristbands and donated the profits to MAGNUM.
  • Catherine Charrett-Dykes has been working on an awareness campaign on Facebook for CHRONIC Migraine, using a purple ribbon with a red stripe. 

AmethystCrystalCluster150Another reason I like purple for Migraine and headache is that in crystal healing, amethyst is the healing stone for Migraine and headache. 

Since the color has just been "made official," we don't yet have pins, bracelets, and the like available, but I'm sure they will be soon. Such items will make great fundraising projects to raise research $$ for Migraine, cluster headaches, and other headache disorders.

In the meantime, here are some places you can get information and start joining in to raise awareness:

  • Awareness web site: www.FightingHeadacheDisorders.com. This site is one to bookmark since it will be kept updated with links to purple items, awareness projects, and more information as it becomes available.
  • Add a purple ribbon to your profile picture on Facebook. This will work whether you've changed to the new timeline feature or not. To do this, go to PicBadges.
  • Also on Facebook, visit and like the Fighting Headache Disorders Facebook page.

Many thanks to the organizations who have endorsed purple as our awareness color. They are (in alphabetical order):

Also, many thanks to Ellen Schnakenberger, who helped get FightingHeadacheDisorders.com up and running and is helping with the Facebook page as well.

Now that we have our color, I hope you'll join me in wearing it often and using it wherever and whenever possible to show awareness and support. If you use it on your blog or web site, or have suggestions, please let me know!

Live well,


 

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 March 22, 2012.


Medications Approved by the FDA for Migraine

PreventivesFDAApp166

Many of the questions about Migraines and Migraine disease revolve around the medications used to treat Migraine. Given the number of medications that are being used to treat Migraine today, the number of medication questions seems to keep growing.

One question I received Friday was from a gentleman who was looking for a listing of all the medications use for Migraine that are actually FDA approved for Migraine. It was what Oprah would call an "Aha! moment." With all the writing I've done about Migraines, I've listed those medications within other articles, but haven't written an article specifically on the topic.

I've remedied that omission. Here's that article: Medications Approved by the FDA for Treating Migraine.

Live well,


 

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 March 12, 2012.


Living with Migraines - Thoughts on a Sunday

ThoughtsSunday

It seems to be a recent trend for a Migraine to be kicking my backside on Sundays. Maybe it's just that it's been a trend for the weather to be changing on Sundays lately, and my doctor and I are still waiting to see if the change we've made to my treatment regimen is going to be the right one to reduce my Migraine frequency. In any case, I hope your head is being kinder to you today than mine is to me.

Last week was a busy week with several opportunities to talk with other Migraineurs who are working hard to get their Migraines better managed and some who are entering into the advocacy arena, some in new and creative ways.

Kelly, who writes the blog Fly With Hope, has started a magnificent new project - Project Migraine Hope. Here's a snipped from her description of Project Migraine Hope:

"Project Migraine Hope is a community of videos where individuals who have Migraines (chronic or episodic) and loved ones/caregivers/friends of those who have Migraines of all ages and backgrounds share their stories with Migraine disease and share a message of hope for others going through what they are going through."

When you have a big of time, it would be well spent checking out the Project Migraine Hope web site.

Several other people with Migraines or cluster headaches were busy working to get more signatures on the Alliance for Headache Disorders Advocacy (AHDA) petition urging Congress to hold hearings on the impact of Migraine and other headache disorders. Many of these peole have Migraines or headaches that are frequent and severe enough that they're seldom able to leave their homes, but they want to be part of an advocacy effort to make things better for all of us. In the left column of this blog, you'll see a widget with a clock counting down to the deadline for signing the petition. if you haven't already signed it, you can click on that widget to sign it or CLICK HERE.

Someone with chronic Migraine also asked me about attending Headache on the Hill (HOH). HOH is an event organized by the AHDA. During this event, advocates meet in Washington, DC, to visit the offices of their Senators and members of the House to bring their attention to issues of vital importance to people with Migraine and other headache disorders. This year, HOH advocates will be taking the petition with them.

From Kelly to people attending HOH to people working to get more signatures on the AHDA petition, there's a common thread. All of these people know that one person CAN make a difference. That reminds me of one of my favorite YouTube videos, so I'll share it with you...

Live well,


 

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 January 28, 2012.