Putting Our Heads Together

Everyone Can Help Create Migraine Awareness

We all want to make life easier and better for everyone with Migraines - for ourselves, our children, and our grandchildren.

One of the best ways to work toward that goal is to raise awareness because increased awareness can lead to results that would accomplish exactly what we want - making life easier and better for everyone with Migraine.

How would increased awareness accomplish that? Increased awareness could result in:

• more research funding, which could result in better treatments; 
• our family, friends, and coworkers understanding why we miss work, need them not not wear that perfume around us, want to go out with them but can't, and more;
• more understanding and better accommodations at work;
• reduced stigma;
• much more.

The thing about raising awareness is that it's kind of like saving change in a jar - a bit here and there can really add up, and one person can accomplish more than they might think.

Here are some ways each of us as individuals can help create awareness, no matter how much or how little time we have to devote to it:

• Get in the habit of saying "Migraine attack" rather than "Migraine headache." This helps make the point that Migraines are not "just bad headaches." When you have the opportunity, explain that Migraine is a genetic neurological disease, and that the headache is only one symptoms of a Migraine attack and that a Migraine can, in fact, occur with no headache at all.
• Adopt Purple. They're just starting to become available, but as they become more available, find a purple pin, bracelet, or other awareness items to demonstrate Migraine and headache disorder awareness. When people ask you about them, you can explain as much as you like, or you can send them to www.FightingHeadacheDisorders.com.
• Add a Purple Ribbon to Your Facebook Pic. Use PicBadges to do this. It's simple and free!
  
• Share on Facebook. When you see good information about Migraines or headaches or awareness efforts, share it on your Facebook page. It's amazing how many people those links get around to!
• Tweet, Tweet, and ReTweet! See something interesting? Tweet it! See an interesting Tweet? ReTweet it!
• Visit the site if the Alliance for Headache Disorders Advocacy and register for their email list. The AHDA will notify you by email when they have action alerts, usually times then an email to our Senators or members of the House are needed for advocacy efforts. These can generally be done in five minutes or less. Sharing them with people you know is another great way to raise awareness.
• Choose a few good, accurate Migraine web sites. Type a list of the site, print copies, and keep it with you. When the subject of Migraines comes up, you'll be prepared to share accurate information with others.

These are just some of the many things we can do to help build awareness. Do you have other suggestions? If so, please leave a comment and share them with us!

Live well,

 

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 May 13, 2012.

Migraine Pearls or Onions? 5/7/12

Do you get much of your Migraine information online? You'll definitely find it in abundance! The question is whether it will be accurate and unbiased.

Online information can be bright, polished, and valuable - like a pearl - or it can be well... rough and stinky - like an onion.

This feature, "Migraine Pearls or Onions?" highlights both the gleaming pearls I come across and the malodorous "Migraine Onions."

Today's Pearl goes to Kerrie Smyres for her blog, The Daily Headache. Despite having chronic Migraine, Kerrie has been writing The Daily Headache since 2005 and has covered a wide range of topics from fluorescent light bulbs to surgery for Migraines... from good books to bad days. Every Migraineur can identify with Kerrie, and she writes in a style that makes her blog easy to read and follow. What really clinched the Pearl for her is that Kerrie's posts are always well researched and accurate. Thank you, Kerrie!

On the opposite end of the spectrum from Kerrie's well researched and accurate posts, we find Migraine articles on NewsOlio.com, specifically, Migraine food remedies - Better quality of life for migraine sufferers through foods, and Are migraines common in kids, and how to treat them? Neither of these articles is terribly accurate. The second one is full of outdated terminology AND theories. NewsOlio is an odd site. Neither sources nor authors are listed for any of the content, but there is a medical disclaimer. So, they're not going to tell us who wrote it, or where they got their information, but they're going to be darned sure to cover their hind ends with a disclaimer anyway. The fact that you can't tell who write the articles or what sources they use is enough to tell you that it's not dependable content in the first place. So, the rough, stinky onion goes to NewsOlio, and particularly those two articles.

Yes, there's a great deal of Migraine information online, but be picky about the sites you choose. Articles that are informational in nature as opposed to opinion or commentary should list sources for their information. You should be able to find who wrote the content and when. If not, move on.

Live well,

 

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 May 7, 2012.

Submit YOUR Migraine and Headache Poetry Through May 13

Since 2001, the Putting Our Heads Together Poetry Contest has been a way for people impacted by Migraine and other headache disorders to express themselves through poetry to:

• creatively educate the public,
• raise awareness,
• combat stigma,
• share their feelings with other like-minded people,
• and more.

In previous years, we've held the contest a bit earlier in the year, and announced the winners in April, in observance of National Poetry Month. This year, we'll be announcing the winners the first of June, in observance of National Migraine Awareness Month.

To accommodate some Migraineurs who have emailed, saying that their Migraines have prevented their meeting our original contest deadline, we've extended the deadline to midnight on Monday, May 13, 2012.

All poetry must be on the subject of Migraines or headaches.

• All poetry entered will be published on www.HelpForHeadaches.com.
• Some of the top poems will be published in the National Headache Foundation's magazine, HeadWise.
• The winning poem will be published in Pain Medicine News.
• The National Headache Foundation will give the winning poet a gift of $250 U.S. dollars.
• The contest is judged by The Migraine Research Foundation, Dr. Seymour Diamond, and Teri Robert.

Ready?

Proceed to the complete contest rules and link to the entry form.

Live well,

 

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 May 4, 2012.

Migraine Advocate's Toolkit - Knowledge

One of the primary responsibilities of an advocate working with Migraine patients it to help them have accurate information so they can work more efficiently and effectively with their doctors as treatment partners.

To accomplish this, it's essential that we have a good working knowledge of Migraine disease. We also need to know at least the basics of other headache disorders as well so we can share this knowledge and so we can recognize sources of reliable information to recommend to patients.

There are a couple of quotes about knowledge that I especially like:

"Knowledge is Power."
translated from the original Latin, "Ipsa Scientia Potestas Est."
~ Sir Francis Bacon in Meditationes Sacræ. De Hæresibus (1597).

"Knowledge is the best prescription."
~ Dr. C Everett Koop
Surgeon General of the United States, 1982 - 1989.

Obviously, any advocate needs knowledge about the condition that affects the patients with whom we work. We also need to avail ourselves of knowledge in other areas such as:

• health and prescription insurance coverage;
• laws such as HIPAA, the Americans with Disabilities Act, and others;
• information about medications and other treatments and complementary therapies; and
• much more.

It's impossible to become an expert in all areas, but we can do the next best thing. We can build a network of colleagues and contacts who can fill in the blanks when we don't have the information our patients may need. That way, when we can't answer questions, we know who can. That's where wisdom comes in. Where knowledge is concerned, part of wisdom is realizing that we can't know everything and when it's time to turn to someone else for assistance.

Live well,

 

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 23, 2012.

Who Are You Without Your Disease? - Blog Carnival

Usually, I write specifically about Migraine, other headache disorders, or other directly related issues. This month, I also wrote about the impact of Migraine disease on my life for the Patients for a Moment Blog Carnival: Who Are You Without Your Disease?

The goal of the Patients for a Moment (PFAM) Blog Carnival is to "build connections within the community of people who blog about illness, disease and disability." As the host this month Diana Lee asked fellow bloggers to write on this theme: "Who are you without (aside from) your disease? What makes you more than just your disease? How have you adapted these aspects of your life so they're not completely overcome by your illnesses?"

This months PFAM Blog Carnival is hosted by Diana on Somebody Heal Me. Check out all the entries in Patients for a Moment Blog Carnival: Who Are You Without Your Disease?

Live well,

 

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 17, 2012.

Who Am I without Migraine Disease?

The topic for this month's Patients for a Moment blog carnival is Who are you without your disease?

I've been thinking about this topic for a couple of weeks now, but find that I don't really know how to answer it since I've had Migraines since I was so young. The first Migraine I remember occurred when I was about six-years-old, so to me, I've always had Migraines.

Given that, I pondered how Migraine disease has influenced who I've become as an adult...

Attitudes and feelings:

• Determination - This disease will NOT beat me.
• I hate that so many people are in pain and suffering other Migraine symptoms. Having lived with this myself makes me very aware and sympathetic toward others with this disease  as well as other health issues.
• On the other hand, I've also learned that we Migraineurs must work to identify and manage our triggers and work with our doctors toward effective disease management. So this is something I try to share with others, especially since studies have shown that educated and proactive patients have better outcomes.
• I do respect doctors and other health care professionals, but I expect them to return that respect and make decisions WITH me, not FOR me.

Family:

• This is where I've been fortunate. We traced Migraine back in my mother's family three generations. My father had terrible headaches that he thought were sinus headaches. Now we know that most of what people think are sinus headaches are actually Migraines. In any case, given the family history, there was no problem with my being diagnosed, despite my young age; nor was there any problem with my family doubting me.
• My husband and sons haven't always known what to do for me, but have always been extremely patient and understanding. Our sons ended up marrying women with Migraines, so that understanding now comes in handy, especially given that both of them now have children with Migraine.

Work / Career:

This is where Migraine disease has had the most impact on who I am and what I do. In college, I studied to teach high school English. After I realized that I wouldn't function well in today's classrooms, I completed a two-year degree in office technology and worked in office management. When my Migraines were their worst and most frequent, my blood pressure was also running high, and I simply couldn't work.

• In searching online for Migraine information in 2000, I discovered that About.com was looking for someone to write and "guide" a new Migraine site. I applied for that job, got it, and worked for them until 2007.
• In 2007, In left About.com and went to work for the HealthCentral Network, which is now part of Remedy Health Media, writing about Migraine and working with their Migraine community at www.healthcentral.com/migraine. 
• Near the end of 2010, I also started writing part-time for a new site, Migraine.com.
• Since 2000, by working with Migraine specialists, we were able to get my Migraines from chronic back to episodic. Last year, because of some other health issues, I had to cut back one of my preventive medications, and they became chronic again. My Migraine specialist and I have been working on a new preventive regimen, and they're finally getting back to episodic again.
• Other health issues combined with Migraine disease make it difficult for me to be dependable enough for a "regular" job on somebody else's schedule, but this type of work allows me to work from a home office on my own schedule. When I need to travel for work, I build in an extra day at the beginning and end of trips since traveling so often triggers a nasty Migraine.
• Although I hate that my health limits what I can do, there's a good trade-off. At the end of the day, I always know that I've been able to help someone else with Migraines that are messing up their life.

All in all, Migraine disease has made me stronger, more empathetic, more sympathetic, and more determined. I will NOT let it beat me, but I will USE it to make me stronger.

Live well,

 

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 14, 2012.

Migraine Advocate's Toolkit - Unity

There are a number of tools that every Migraine advocate needs...

• knowledge of the disease,
• passion,
• stubbornness,
• persistence,
• faith that things can get better, and
• many more.

We may not always agree on everything, but we have the same goals. We want...

• accurate information,
• more research funding,
• more and better treatments,
• better understanding of the disease,
• reduction of the stigma associated with Migraine, and
• as soon as possible, a cure for Migraine disease.

To reach these goals, one of the most valuable tools we can have is unity - unity with other advocates. Whether we're advocates at the level of working as patient educators, managing large web sites and support groups, and lobbying at the national level or advocates at the level of supporting fellow Migraineurs and blogging when we can, we need to stay strong and put the patients first.

There's been some division in the online Migraine community recently, with some people who consider themselves advocates being publicly critical of the work done by other advocates. As I said above, we don't always agree on everything, and no two people are going to always do things the same or take the same approach. Still, for the good of the patients we want so passionately to help, it's essential that Migraine and headache advocates stay united and present a united public front. Otherwise, we run the risk of doing more harm than good. So, this is a plea for calm and unity, for handling ourselves rationally and maturely. There need not be any feelings of competition among advocates - there's plenty of work to be done; plenty to go around. Communicating is essential. If you're an advocate for people with Migraine or another headache disorder, and you don't understand something another advocate is doing, email them and discuss it with them, please. Discuss it with them, not everyone else. We must stand together against this disease if we're going to make progress.

Every day, I see dedicated advocates working online to make a difference. I salute you. You're the best! Please know that I don't mean this post to be critical of anyone, but truly as a plea, as a call to unity. We're all working toward the same goals. Please, let's all work together. Not only can we get more done, but it will be so much more fun!

Live well,

 

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 12, 2012.

April 2012 Migraine and Headache Blog Carnival

 Welcome to the
February, 2012
Headache and Migraine Disease Blog Carnival!

The Headache & Migraine Disease Blog Carnival has been created to provide both Migraine and headache patients and people who blog about Migraines and headaches with opportunities to share ideas on topics of particular interest and importance to us.

The theme of the January carnival is "How do you build and maintain hope when your life is dominated by Migraine disease or another headache disorder?," and it's hosted by Diana on Somebody Heal Me.

Check out this month's great collection of blogs in Building & Maintaining Hope: April Headache & Migraine Blog Carnival.

Live well,

 

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 

 

© Teri Robert, 2012
Last updated April 9, 2012.