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Migraine Advocate's Toolkit - Knowledge

KnowledgeWordCloudOne 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,

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 April 23, 2012.


Who Are You Without Your Disease? - Blog Carnival

PatientsMoment200Usually, 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,

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 April 17, 2012.


Who Am I without Migraine Disease?

PatientsMoment200The 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,

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 April 14, 2012.


Migraine Advocate's Toolkit - Unity

StackedHands250There 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,

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 April 12, 2012.


April 2012 Migraine and Headache Blog Carnival

MigraineBlogCarnival150 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,

PurpleRibbon50
 

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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 April 9, 2012.


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 Poetry Contest Opens

Poetry2012-250Here's a perfect opportunity for us to express what we think and feel about Migraines and headaches!

The 2012 Putting Our Heads Together Poetry Contest is now open and accepting entries through midnight, Friday, May 4, 2012.

Whether you're an experienced poet, or have never written a word of poetry before, you're invited to enter the contest. It might help you to know that one of our previous first place winners had never tried writing poetry before.

There are many reasons to participate:

  • Writing is a great creative outlet.
  • All entries will be published on www.HelpForHeadaches.com for the public to read, thus helping raise awareness, dispel myths and misconceptions, and reduce stigma.
  • It's an interesting way to participate in the online Migraine community and support each other.

Since 2001, people with Migraine and other headache disorders have been standing up to their Migraines and headaches and expressing themselves through poetry in this contest. They've been sharing their hopes, fears, frustrations, courage, anger, and determination. To see some of the wonderful works people have submitted, take a look at some of the poetry from our 2011 contest.

Because the laws governing international contests get quite complicated if there are prizes involved, we don't award prizes for this contest, but that doesn't mean there are no rewards. All poetry submitted that meets the entry rules will be published on www.HelpForHeadaches.com. Plus, you'll have the satisfaction of sharing your work, raising awareness, and helping get rid of myths and reduce the stigma associated with Migraine and other headache disorders.

The Migraine Research Foundation joins me this year in judging the contest. Winners will be announced June 1, 2012, in time for National Migraine Awareness Month.

Won't you join us? You can find more information on our rules and guidelines page, and there's a link to the entry form there.

Live well,


 

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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 April 2, 2012.