Greetings to you, my readers and Migraine family! Today, I’d love to start with a drum roll, but it needs to be a quiet one for all of us with Migraine and Chronic Migraine who can’t stand loud noises. Why start with a drum roll? Because I have an exciting announcement to make, so keep reading!
For the last couple of months, I’ve been telling you about the Rewrite Your Day campaign, a campaign intended to raise awareness about Chronic Migraine and its heavy burden. The Rewrite Your Day campaign invites people with Chronic Migraine to share their stories about important days and events that have been stolen away from them by Chronic Migraine.
Celebrity event planner Mindy Weiss and a panel of five advocates (and yes, I get to be one of them!) are selecting 15 people who share their stories to recreate a special moment or day in their lives. The selection process has been so difficult – in a very good way! The entries are so engaging, so… well, it’s hard to find the words to describe them. As I read them, many of them take me back to the days when my own Migraines were chronic, bringing tears to my eyes at times. I can identify with those stories, and my heart goes out to the people sharing them.
Today, I get to tell you who our first Rewrite Your Day contest winner is and share her story with you. Congratulations to Patrice Johnson!
Patrice is from Prairieville, Louisiana (near Baton Rouge and New Orleans). She is 31-years-old and is an executive assistant and former member of the Louisiana National Guard. Here’s Patrice’s story that she shared and her description of her re-creation:
“I’ve lived with Chronic Migraine for more than 15 years with frequent headaches that can last 15 or more days a month and are often accompanied by nausea, sweating and loss of my peripheral vision. My Chronic Migraine has impacted so many days of my life, but none more important than my wedding day in January 2009.
I love to plan special events for my friends and family, as well as for the non-profit and community youth groups I support in my area. So, when it came to my wedding, I spent months perfecting every detail, including personally designing the centerpieces, selecting the colors and flavor of the cake, and spending hours writing my own vows to recite to my future husband. The one thing that was out of my hands was the migraine I woke up with on my wedding day, which only worsened throughout the morning and left me in terrible pain. At the ceremony, the lights from the cameras flashing made it almost impossible to get down the aisle, and I rushed through my vows since the migraine made it difficult to read. I did my best to greet my guests and enjoy the reception, but I could barely pose for photos or eat the delicious food prepared by our cousin. During our first dance, I could only put my head on my husband’s shoulder and sway from side to side; he knew I wasn’t able to move much more than that due to the debilitating headache and dizziness. I wish so much that we could have graced the dance floor the way we had envisioned, but Chronic Migraine doesn’t care that it’s your wedding day.
Now that I am seeing a headache specialist, my migraines are more manageable. I am sharing my story to let other people like me know that they are not alone, and encourage them to see a specialist who can help diagnose and manage their Chronic Migraine.”
Patrice’s re-creation:
“I am so excited to work with Mindy Weiss, who has planned so many celebrity weddings, to renew my vows and make new, positive memories of my wedding with my husband. I can’t wait to read those vows with the emotion I had intended to convey on our wedding day and have my loved ones there to watch. I know Mindy will make me feel like the princess that I had always wanted to be, and I will finally have a wedding memory that doesn’t include Chronic Migraine.”
Let me describe a few of the stories I’ve read in the last few days:
- One woman described having Migraines since the sixth grade and being to many doctors. She’s a wife and mother of three boys, living with a Migraine or headache every day. She relates how difficult it is when her children want to do things with her, but she constantly has to tell them, “No,” because even pushing one of them on a swing hurts.
- Another woman has survived cancer, but Chronic Migraine kept her from going to Cancer Survivor’s Day with her husband and children. She survived cancer, but Chronic Migraine steals days of her life from her.
- A husband wrote about his Chronic Migraine ruining his wedding day. He wrote not about what that took away from him, but what it took away from his bride.
Those are just a few examples. The stories talk about missed weddings, anniversaries, graduation celebrations, Christmases, Father’s Days, and so much more. They also talk about how Chronic Migraine robs them of more than just special days and events – how Chronic Migraine robs them of the everyday joys, of being present in the lives of their families. Imagine being a parent sitting on the sidelines while your children’s childhoods pass by.
I’m really excited about Rewrite Your Day. You can find stories similar to those being shared in Rewrite Your Day in the online Migraine community, but Rewrite Your Day is pointing a spotlight on the devastation of Chronic Migraine. It’s bringing these stores to the public. This kind of awareness has been needed for a very long time.
If you have Chronic Migraine, please consider sharing your story. Entries will be accepted through December 30, 2011. Doing so not only enters you into the contest, it also enriches the collection of real-life experiences that will be available for the public to read. These stories will give the general public a look at the lives of people with Chronic Migraine as only the stories of real people can. These stories will also help other Migraineurs see that they’re not alone and encourage those who think they have Chronic Migraine to seek care from a doctor who specializes in the diagnosis and management of the condition. On top of that, they’ll help build awareness about Chronic Migraine and reduce the stigma associated with Migraine and Chronic Migraine. All the statistics and facts in the world can’t have as much impact as real stories told by real people.
If you’re concerned about entering the contest because your Chronic Migraine might keep you from being able to participate if you were to win, please go ahead and share your story about an important event or day that Chronic Migraine caused you to miss. Or, alternatively, share your story about something Chronic Migraine prevents you from doing. It could be cleaning your house and washing the windows, preparing a nice family holiday dinner, painting your bedroom and installing darkening shades and draperies, or any number of things. It could even extend to sharing how Chronic Migraine caused you to lose a job.
If you choose the alternative I’ve described, after you share your story, add that you’re concerned about your Chronic Migraine preventing your reliving a moment or event. Then tell us something we could arrange that you could handle. Examples: hiring a cleaning service to clean your house, hiring a chef to prepare that holiday dinner, bringing in someone to redo your bedroom for you.
If you suspect that you have Chronic Migraine, or if you know someone who does, please visit the Rewrite Your Day website at www.RewriteYourDay.com for:
- the contest information and entry form,
- information about Chronic Migraine, and
- help finding a doctor who specializes in the diagnosis and management of the condition.
It’s a sad truth that entirely too many people are losing chunks of their lives to Chronic Migraine – Experiencing Migraines with headaches 15 or more days per month with the headache lasting four hours or longer a day.1,2,3 People who live with Chronic Migraine have a Migraine or headache more often than not, an untenable situation that can be devastating.
We’ve waited a very long time for a way to show people what Migraine and Chronic Migraine can do to our lives. Let’s do all we can to make the Rewrite Your Day campaign as effective as possible. Share your story. Tell others about the contest and the site. Email a link to www.RewriteYourDay.com to everyone you know. Tweet about it; post a link on Facebook. If you blog, blog about it. Let’s make our voices heard!
Disclaimer: I am under contract to Allergan, Inc., for the Rewrite Your Day campaign as a consultant and one of the panel of advocates selecting the winners, but it should be noted that I am receiving no financial compensation for my participation.
____________
Resources:
1 Headache Classification Subcommittee of the International Headache Society. The International Classification of Headache Disorders: 2nd edition. Cephalalgia. 2004;24(suppl 1):9-160.
2 Olesen J, Bousser M-G, Diener H-C, et al; Headache Classification Committee. New appendix criteria open for a broader concept of chronic migraine. Cephalalgia. 2006;26(6):742-746.
3 Manack A, Turkel C, Silberstein S. The evolution of chronic migraine: classification and nomenclature. Headache. 2009;49(8):1206-1213.
Live well,
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© Teri Robert, 2011
Last updated December 19, 2011
Living with Migraines - Thoughts on a Sunday
I spent most of yesterday online and on the phone trying to help and encourage other Migraineurs who are especially frustrated right now. They're really hurting, and many of them are also frustrated that their doctors don't know what to do next. Some are frustrated that we don't have better treatments. Some are in that terrible place in their minds where many of us have been, that place where we feel like giving up on doctors and treatments and trying to "just live with it." My heart goes out to every one of these dear people. Heaven knows I've been there too.
It's a bit ironic that the two qualities my mother always said would be my downfall have probably been the very qualities that have kept me from giving up when it comes to my Migraines - stubbornness and temper. I'm just too stubborn to give up, and getting angry was the push I needed about 10 years ago when I first sought care from a Migraine specialist. I was angry with the Migraines, and I was angry with the doctors who offered me platitudes instead of help.
Being stubborn and getting angry keep me going until I met Dr. William Young at the Jefferson Headache Center. Within six months of my first appointment, we were making progress controlling my Migraines. They were still a big problem, but still, it was progress. Neither of us gave up, and we eventually got to the point where I usually had at least a month between Migraines, sometimes longer. Now, I'm not saying that anger is necessarily a good thing. What I am saying is that we shouldn't give up or give in.
An extremely difficult issue I see Migraineurs facing is their families and friends not understanding Migraine. They feel isolated. They feel guilty. Just yesterday, someone wrote to me:
Wow. I've been there, haven't you? Here's where I am with that - I've learned what friendship really is, and if people are our friends, they'll make the effort to learn a bit about Migraines, understand, and support us. If they won't do that, you know what? They're really NOT our friends. Oh, it's not easy to get to the point of looking at things that way, but let me tell you something. In the end, the person I absolutely have to live with, the person who absolutely needs to be my friend is me. That means I'd darned well better like and love myself, and doing that means recognizing if other people are true friends or not. I'd rather have one good friend that lots of so-called friends who are only there when I'm feeling well and can do things with them and be a lot of fun. Real friends stick with you no matter what.
Another issue I came across yesterday was someone who commented about "Big Pharma" not developing new treatments for Migraine. I can understand that way of thinking and have had some issues with pharma myself. Still, I have to say that I can't blame pharma for the lack of new Migraine treatments. Pharmaceutical companies are for-profit companies that have shareholders and boards of directors to answer to. They're not nonprofit charitable organizations. To develop new Migraine treatments that go beyond what we have now, researchers need a clearer understanding of the pathophysiology of the disease, how it works and what goes on in our bodies during a Migraine. That kind of seminal research isn't the kind of research that pharma companies can undertake. It's the kind of research that's funded by the government, mostly through the National Institutes of Health (NIH). We're not going to see new and effective Migraine treatments until more of that basic research is conducted. That's why the Alliance for Headache Disorders Advocacy (AHDA) has been lobbying for increased research funding for Migraine and other headache disorders and is currently lobbying for Congressional hearings about the impact of Migraine.
Explaining the issues with new treatments and research funding started me thinking about Migraineurs and what we can do to help ourselves. Of course, we need to learn about Migraine and work with our doctors as informed treatment partners to develop the best possible treatment regimen. But until there's more research funding, it's going to continue to be more difficult than it needs to be. For example, did you know that there are no medications on the market that were originally developed for Migraine and headache prevention? Nope. Not a single one.
So, here's where I run into an issue that has me thinking for hours at a time without coming up with any answers...
On November 22, the AHDA set up a petition to Congress urging them to hold the first ever Congressional hearing devoted to MIgraine and headache disorders. That was 19 days ago, yet fewer than 2,000 people have signed this online petition. We've emailed over 25,000 people with information about the petition. It's also been Tweeted about and posted all over Facebook. It takes literally less than two minutes to sign it online. All a person has to do is go to the petition and enter their name, email address, and zip code.
I truly just don't understand this. Posted all over the Internet and over 25,000 people emailed about it, and fewer than 2,000 online signatures. I understand that people with Migraine aren't well, but if they're well enough to read email and visit Facebook, they're well enough to sign the petition. If we won't take two minutes to sign that petition, how can we expect other people to care enough to try to help us? That petition will be sent to members of Congress, and we'll be taking copies with us when we visit members of Congress during the AHDA's Headache on the Hill event in March. But I have to tell you -- unless people start signing it, Congress isn't going to pay any attention to the petition or our request. Why should they? We can stand there and tell them that more than 37 million Americans have Migraine, but how can we stand there and tell them that those Americans need and deserve better treatment when we can't get them to sign a petition? They'll laugh us right off Capitol Hill.
Can you help me understand this? If you've seen information about the petition but haven't signed it, why not? Leave me a comment telling me why you haven't signed it to help me understand, please?
If you haven't signed the petition, please sign it now? Just follow this link to sign the petition. After you sign it, a page will come up that helps you share the link via Facebook, Twitter, and email. Please share it with as many people as possible. If you're talking to others and want to share the petition link, here's one that's pretty easy to remember, www.MigraineAdvocacy.org/petition.
There are still other thoughts spinning through my head, but I think I've written enough for one post. Thank you for reading all of this.
Live well,
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© Teri Robert, 2011
Last updated December 11, 2011
Posted on December 11, 2011 at 10:02 AM in Awareness and Advocacy, Commentary, Migraine Disease, Migraine Management, Migraine Research, Migraine Specialists | Permalink | Comments (6) | TrackBack (0)
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