Friday, November 21, 2008
Arabella is taking on some of the sites and blogs many Migraine bloggers don't or won't. Why not? I can't speak for others, but I generally don't because I don't have time to deal with retaliation. I've seen what some of these people do when someone writes something about them, and it's something they don't like.
Great job, Arabella! I hope to see you around and blogging for a very, very long time.
Tuesday, November 11, 2008
When I emailed her, she explained that she had left About for health reasons -- that she needed less stress and responsibility. Not too long after that, she started writing and providing support on the HealthCentral Network's MyMigraineConnection.com. There, a site producer covered some of the duties that had been Teri's responsibility at About, allowing her more time to write and provide support while other things were covered by the producer.
This evening, I discovered that someone has finally filled the job of guide on the About.com site. A good thing for all of us who can use all the information we can get. Right? Well . . . at this point, I'm not too sure. The first thing I noticed is that Dr. Foley, the new guide, seems to lump headaches and Migraines into the word "headaches." In his bio, he says, "I spend my days treating primarily people in pain. Headaches are very common and many of my patients come seeking relief."
A good thing? Time will tell.
Monday, August 04, 2008
OK, I'm seldom at a loss for words, but I just saw a book that leaves me feeling inadequate to express my thoughts about it in words.
All of those words come to mind, yet none seem adequate for this book. Migraine Expressions, edited by Betsy Blondin, is the first book of its kind. Through the words and images submitted by Migraineurs, this book takes you into the world of Migraine sufferers. I am in awe of people who can express themselves in this fashion.
Please, please, please, go to www.MigraineExpressions.com and get a copy of this book! If you have Migraine disease, you will find yourself in its pages. If you don't, this book will help you understand the disease and its sufferers better.
For more details, please see the press release below.
NEW MIGRAINE ART
Groundbreaking book depicts migraine in insightful visual and written art from migraineurs worldwide
No other book expresses migraine in both words and art of people who suffer the symptoms and survive the disease; most books about migraine are from experts who define, explain, and offer advice on how to manage it. This book will complement existing information, be instrumental for people with migraine to share experiences and communicate feelings, and serve as a tool for furthering understanding among non-migraineurs.
Migraine is a neurobiological disease impacting more than 30 million people in the
Suzanne E. Simons, Executive Director of the National Headache Foundation, commented, “Congratulations! The images and the words are compelling. Migraineurs will relate to the visual images and poems. Those who don’t suffer may be better able to empathize after reading the book.”
The book includes a foreword by leading migraine educator, advocate and author, Teri Robert, Ph.D., who says, “Projects such as Migraine Expressions are rare, priceless, and sorely needed. They offer an intimate view of the impact of migraine disease. The works of art in this book are deeply personal and revealing. They are heart-wrenching and inspiring, filled with both terror and hope.”
And Richard B. Lipton, MD, Professor of Neurology and Director,
Book details: Hardcover, 192 pages, full color, 8.5 by 11 inches, available from publisher at www.wordmetropress.com
# # #
Betsy Baxter Blondin is a longtime writer and editor, a nearly 40-year migraine survivor,
and this is the first book published by Word Metro Press.
Contact Betsy at
Tuesday, July 22, 2008
My mood went up at first -- Yes! More good information to share. Then my mood plummeted as I continued. What? This MAJOR organization, whose members and staff should know better, used the term "headache" through their entire release. Then, they added a paragraph about Migraine at the end. No way could I promote the information from their survey. There was no way to tell how many of the survey participants were responding based on their headaches and how many were responding based on Migraines.
I responded to the PR firm email, expressing my concerns and saying I could not promote the survey and its results. The next day, I received an email from the director of the nonprofit. In part, it read...
...The (name of nonprofit removed) uses the terms interchangeably as often those who have migraine often don't use that specific term for their headache. Sick headache and stress headache are frequently used to describe migraine. Many migraineurs think that if they don't have nausea/vomiting and/or sensitivity to light/sound, they don't have migraine, when they actually do. These people may still take time to read the information the (name of nonprofit removed) provides when the more generic term of headache is used...What? I can't believe this was said. This organization should be educating people, not feeding the lack of knowledge and understanding. Maybe they don't think it's worth the effort to teach people?
I looked back at the material that was sent to me. It could easily have been rewritten to be enlightening rather than pandering to unawareness. All it would have taken would have been to replace the word "headache" with the phrase "headache and Migraine." It would be nothing to start adding a paragraph to their releases that explains that people are mistaking Migraines for headaches.
It just seems to me that this director is talking in circles in the email to me. It seems that this person is saying it's better to pander to ignorance rather than promoting education and awareness.
I'm not going to name the organization. It's just not worth it to start a battle with a director who is so sure that their organization is right.
Allow me to close with the last sentence of the reply I sent to this director:
If we can't count on the leaders in the field to push for progress, on whom can we count?Sadly,
Thursday, July 03, 2008
rating: 5 of 5 stars
The most helpful migraine and headache book to date. Ms. Robert tells it like it is and provides more information than any doctor has time to provide. Based on solid science as well as personal experience -- both her own and that of case studies.
Offers not only information, but hope and inspiration.
View all my reviews.
Wednesday, May 14, 2008
Diana Lee has posted May's Headaches and Migraine Disease Blog Carnival on Somebody Heal Me. This month -- Migraines & Exercise: How do you stay active?
Generally speaking, a blog carnival is a collection of links to a variety of a blogs on a central topic. The Headache & Migraine Disease Blog Carnival has been created to provide both headache and migraine disease patients and people who blog about headache disorders with unique opportunities to share ideas on topics of particular interest and importance to us. Visit the link to this month's carnival for a collection of informative entries on how other Migraineurs fit exercise into their lives.
Sunday, May 04, 2008
Each year, writer and patient advocate Teri Robert conducts the Putting Our Heads Together Poetry Contest to bring together people with AND without Migraine disease and headaches to share our thoughts and expressions. This contest is held in April, National Poetry Month.
I just read this year's winning poems and many of the other poems entered. Wow! The poems submitted to this contest get better and better every year. I'm glad I'm not one of the judges. There's just no way I could choose!
When you have a bit of time, go read the wonderful poetry! You won't be disappointed!
Thursday, April 24, 2008
Of course, the increase in Migraines is at least partly my own fault. Once warmer weather arrives, I tend to curl up on my porch swing and sit there late into the night. That means going to bed later, getting less sleep. So, add that to the mercurial weather, and I'm doomed.
I can't decide if I love or hate spring. The one thing I'm sure of? Migraines love it!
Tuesday, April 15, 2008
Now in its seventh year, the contest encourages sufferers to find creative ways to express their pain. “Putting Our Heads Together” is free and will be published on HealthCentral’s MyMigraineConnection.com and Roberts’ HelpForHeadaches.com.
Entries will be judged by MAGNUM, the National Migraine Association (www.migraines.org) and will be collected until April 21. Winners will be announced on April 30, in recognition of National Poetry Month. “This contest started in 2001, and the work submitted has been amazing. Writing can be very therapeutic, as can reading what others have written,” said Robert, who currently educates and supports patients as Lead Expert for the MyMigraineConnection.com community. “Migraine disease and headaches can impact our lives more than many people could ever imagine.” “People coping with migraine disease continue to reach out to one another, forming incredibly supportive communities online,” said Chris Schroeder, CEO and President of The HealthCentral Network. “It’s an honor to provide the forum where users can creatively tell their stories and inspire others.”
Migraine disease affects nearly 36 million people in the United States alone, and at least 80% of the world's population will be affected by tension-type headaches at some time in their lives. Headache disorders cause more than 1 percent of all disability and 9 percent of all lost labor in the U.S. every year.
More information and the online entry instructions can be found on MyMigraineConnection at www.healthcentral.com/migraine/poetry-contest.html.
Why not join in the fun and enter? The deadline for entries is Monday, April 21.
Monday, April 14, 2008
Generally speaking, a blog carnival is a collection of links to a variety of a blogs on a central topic. The Headache & Migraine Disease Blog Carnival has been created to provide both headache and migraine disease patients and people who blog about headache disorders with unique opportunities to share ideas on topics of particular interest and importance to us.
Visit this month's carnival for a collection of informative entries on basic strategies for coping with migraines and headaches.
Friday, April 04, 2008
Each of us CAN make a difference. Please read the letter below and follow the link to email your Senators NOW.
If you no longer wish to receive e-mail from us, you can unsubscribe here.
No virus found in this incoming message.
Checked by AVG.
Version: 7.5.519 / Virus Database: 269.22.5/1359 - Release Date: 4/4/2008 8:23 AM
Thursday, March 13, 2008
How about another sad fact? Two days ago, the Alliance for Headache Disorders Advocacy posted an alert to their web site asking Migraineurs and other headache disorder patients, their friends, family, coworkers, etc., to email their members of the House about increased NIH funding for Migraine and headache research. The set up they have makes it quick and simple to send that email. It takes less than five minutes. I just emailed Teri, and was shocked by how few people have responded to that alert.
I read several Migraine forums, and am always saddened by the number of people who are desperately searching for effective preventive treatment. Lives are being disrupted and destroyed by this disease.
So, here's my question for those of you who are in that position or care about someone who is -- IF YOU HAVEN'T GONE TO THE AHDA SITE AND SENT THAT EMAIL, WHY NOT?
This is something we can DO that can make things better for us. It only takes a few minutes. You don't have to look up your representative. That's done for us. Even the introduction and closing of the email are done for us. We don't have to leave our homes or even pay for a postage stamp.
Here's my take on this situation. If you don't take a few minutes to go to the AHDA site and email your representative, they you no longer have the right to complain about the lack of available treatments. We can't just sit back and count on other people doing this for us.
It's one email. It's five minutes out of our day. It's time to get off our behinds and DO something!
From a blog entry on MyMigraine Connection:
PLEASE, go to www.AllianceForHeadacheAdvocacy.org NOW. Click the "What YOU Can Do" link in the left column. You will go to our Alert Center. There is a box with our Featured Alert. Simply click the red "Take Action" button in the Featured Alert box. That will take you to a letter that's ready for you to add what you want to say about this issue, fill in your name and address, and have your email sent directly to your Representative. It is urgent that you do this NOW because the House is setting 2009 funding appropriations in just a few days.Please go to MyMigraineConnection, read that blog entry, and take action!
To read the rest of that blog entry, please click here.
Tuesday, March 11, 2008
Diana Lee at Somebody Heal Me has done us all a great service by establishing a monthly headache and Migraine disease blog carnival. This month, it's being hosted by Teri Robert at MyMigraineConnection.
Generally speaking, a blog carnival is a collection of links to a variety of a blogs on a central topic. The Headache & Migraine Disease Blog Carnival has been created to provide both headache and Migraine disease patients and people who blog about headache disorders with unique opportunities to share ideas on topics of particular interest and importance to us.
Take a look at the March Blog Carnival - Maintaining Friendships for Those With Migraines and Headaches.
Thursday, March 06, 2008
The blogging world seems to have gone wild talking about this blog, linking to it, praising it. What the hell? Yes, it's wonderful to have more attention paid to Migraine. This blog MAY help raise awareness. Still, I have some issues with it and the response to it:
- The subtitle, "Perspectives on a Headache," is just plain wrong. Migraines aren't headaches, people! Yes, it's that simple. They're NOT headaches. As I've seen Teri Robert say, "Migraines are a flare-up of Migraine, a genetic neurological disease. The headache, if there is one, is but on SYMPTOM of a Migraine attack. You can have a Migraine attack without having a headache."
- In "About This Blog," they say, "More than 28 million Americans..." Well, hell! If you're going to start a new blog, why not start out with current statistics. That 28 million figure is at least seven or eight years old, maybe older. Based on WHO prevalence statistics and current US Census data, the correct figure is more than 35 million Americans.
- Why call it "Migraine" when one of the primary writers, Paula Kamen, doesn't have Migraine disease? She has chronic daily headache. CHD is horrible, but it's not Migraine disease.
- If this blog is supposed to really address Migraine, there are at least two people missing from the writers on this blog -- Michael John Coleman of MAGNUM and Teri Robert.
- In all the rush to pay attention to the supposedly all-important NY Times, people are missing out on a great deal of blog entries and articles that are just as good, if not better.
Come on, people! Let's put things in perspective. The new kid on the block shouldn't eclipse all the other players. The NY Times blog is no longer new. Let's get back to business!