Living with Migraine: Sometimes, We Need to STEP

Living-with-migraineWith the growth of the Internet, social media outlets such as Facebook have become a primary source of support for many people with Migraine disease, especially those of us with Chronic Migraine. There are countless Migraine support groups on Facebook. Thus has been great for so many of us because attending support group meetings in real life often doesn't work well. We're either too ill with a Migraine to attend, or - if we're feeling well - decide we have other things that need to be done while we feel up to doing them.

There are days, however, when I simply shouldn't post on social media, or at the very least, should do so very carefully. Those are days when I'm tired or don't feel well, and I'm... well, to put it politely, cranky. On those days, I'm overly emotional, and I tend to take things too personally. That means I could end up saying the wrong thing to someone, or say the right thing, but say it poorly. Can you relate?

From what I've been observing in some of the Migraine groups on Facebook, I'm not the only person with Migraine who has this problem. Unfortunately, when one person comments on a post in a not very friendly way, things tend to escalate. Then, moderators have to get involved, comments get deleted, and matters can get heated. It's uncomfortable for all involved when this occurs. 

I've adopted a habit for social media on days when I'm cranky, and I've put a big note on the bulletin board next to my desk to remind myself. I call it my STEP method. When I'm having a cranky day, and I'm posting to social media, before I hit the button to publish my comment, I:

Stop

Think

Edit the comment, if necessary, then

Publish the comment.

Nobody has a good day every day. We all have our "cranky" days, even though we all want to be kind and supportive of others dealing with Migraine disease. If you find yourself in a similar situation on social media, maybe you'll try STEPping with me?

For an interesting look at the issue of taking things personally, please see Migraine Agreement #2: Don’t Take Migraine Messages Personally.

Live well,

 because a migraine is NOT "just a headache"
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National Migraine and Headache Awareness Month Begins Tomorrow

2018-MHAM-Collab-200June is National Migraine and Headache Awareness Month, and there are a number of easy ways in which everyone can participate. Below are just two of the ways you can participate this year. 

Break the Silence

Help the National Headache Foundation break the silence for the millions who suffer from Migraine and Headache by sharing your story! June is Migraine and Headache Awareness Month, and this year, the NHF is collecting stories from around the world at the newly launched headachestory.com.

Anyone can submit a story through headachestory.com, either through words or video. The goal is to empower Migraine and Headache sufferers by showing them that they are not alone. Not only that, increasing awareness of the disease will lead to further research and treatments.

Join the Social Media Challenge

2018-MHAM-SMC-200MigraineDisease.com is kicking off National Migraine and Headache Awareness Month with the 2018 #MHAM Social Media Challenge. This year’s theme is “You Are #NotAlone – Partnering for Better Migraine and Headache Care.” 

As in previous years, there are plenty of opportunities to spread awareness through blogging, tweeting, or posting on just about any social media platform. Each morning, we’ll post a new challenge on MigraineDisease.com. We’ve streamlined the process to make it easier for everyone.

There are three ways to participate:

  1. Quick and Easy
    Click on the icon for your favorite social media platform to share each day’s post.  A window will pop up, giving you the opportunity to add your own unique comments before posting to your choice of platforms.
  2. A Little Effort
    Write a brief response to the day’s challenge in the comments section at the end of our daily posts. Take minute to tell us what excites you the most about the 2018 #MHAM Social Media Challenge. Just enter your comments below.
  3. A True Challenge
    The more ambitious in our community may choose to write a blog post in response to the Challenge. When it’s published, don’t forget to share the link as a comment to that day’s challenges so we can promote you, too.

It’s all up to you. Participate as much as you want, on as many days as you are able. There’s no penalty for skipping days. Self-care comes FIRST, especially during the 2018 #MHAM Social Media Challenge. If you'd like to receive an email with each day's challenge, you can register for that HERE.

These are just two of the activities for National Migraine and Headache Awareness Month. I hope you'll participate as much as you're able to. We can all stand to be reminded that You Are Not Alone!

Live well,

 because a migraine is NOT "just a headache"
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Living with Migraine: We Must Stop Stigmatizing Each Other

Living-with-migraineResearch has shown that the stigma associated with Migraine disease adds to the burden of living with Migraine. I'm sure that comes as no surprise to anyone with Migraine. What may come as a surprise to some of you is how often people with Migraine stigmatize each other. 

We're all different

One of the best examples of people with Migraine stigmatizing each other occurs pretty much every time I see an online discussion about Excedrin Migraine or the commercials for Excedrin Migraine. Invariably, someone will say something along the lines of, "If Excedrin works for you, you don't really have Migraines."

Seriously? That's just not true for everyone. The truth is that we're all different, and our Migraines are different. Although Excedrin Migraine isn't any more helpful that breath mints for my Migraines and maybe yours as well, for some people, it's all they need. Some people have only a few Migraines a year, and they're very mild, but they still have Migraine disease and deserve our respect and support.

Another example is people saying that someone can't possibly be at their computers or using their phones to be online when they have a Migraine. Again, that's not true for everyone. Some people do experience photophobia (sensitivity to light) during a Migraine that's so severe that they need to retreat to a dark room. Others don't have that problem and may use the internet as a distraction to keep them occupied while they're waiting for their Migraine medications to work.

Finally, yesterday, I posted an article, Going to the ER for Migraine Is Not the Best Choice, to a Facebook group. In a nutshell, the article says that there are times when we'll all need to go to the ER, BUT it's not the best place for Migraine treatment. It also says that we should have a full treatment plan that includes preventive and abortive treatments as well as rescue treatments to use, when our first-line treatments fail, to try to keep us out of the ER. It also suggests talking with our doctors about when we should go to the ER. The response from some people was absolutely brutal. They said I didn't know what it was really like to live with Chronic Migraine, and said all kinds of other nasty things that I'm not going to repeat. You know what? I had lost my job and was confined to bed by Chronic Migraine before some of those people were born. They misinterpreted what I said, went on the attack, and stigmatized me. With people's emotions running high, I asked the other moderators of the group to handle the issue because I felt people didn't want to hear from me, but the damage was already done. 

Sometimes, as was most likely the case with the article I posted, people are in pain, and they lash out. I get it. Still, would we like others to treat us in that fashion? I don't think so. We sometimes forget that posting to social media carries a responsibility, a responsibility to act in a courteous and civil manner. People are forgetting that. I have my own theory about one reason for that, but that's not our topic today. Here's a thought - If we're in pain or feeling especially vulnerable or emotional, maybe those are times when we shouldn't post to social media. 

The bottom line

The bottom line is that we all want to see the social stigma associated with Migraine disease diminish and disappear. Right? There are advocates who dedicate their careers and lives to that purpose. BUT... It's not going to happen until we stop stigmatizing each other.

Live well,

 because a migraine is NOT "just a headache"
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Join Me for the 2018 Migraine World Summit Beginning April 18

MWSexperts300The World Migraine Summit begins online tomorrow. It's the biggest opportunity to learn about Migraine disease all year. The Migraine World Summit will bring together over 30 top experts, doctors and specialists to share new treatments, research and strategies for Migraine and chronic Headache.

WHY ATTEND?

  1. World-Leading Experts: At the Migraine World Summit, you’ll learn first-hand from over 30 of the world’s top migraine and headache experts, doctors, specialists, from leading institutions including the Mayo Clinic, Harvard Medical School, Cleveland Clinic, Stanford, John Hopkins Hospital, and the International Headache Society.
  2. Full Access: Many of these world-leading experts have long waiting lists and fees that are beyond the affordability of the average insurance policy. Skip the waiting period and get straight into the room with these experts.
  3. Free: The event is entirely free whilst live from April 18-26. Visiting dozens of specialists in one field would take years and costs thousands of dollars. This is an incredible opportunity to hear from dozens of leading experts in migraine for free during the week. After April 26 transcripts and interview copies are available to order.

I'm thrilled to have been asked to be part of this year's Summit. You can see my presentation, They Don’t Get It: Educating Family & Friends on Migraine, on Saturday, April 21.

It's important to get your free ticket NOW by following this link. Once you've requested and received your free ticket, you'll receive an email each day with that day's schedule. 

Information about the event including topics, schedule and speakers can be found at https://www.migraineworldsummit.com/schedule/

Summit presentations commence Wednesday, April 18 at 9.00am Eastern Standard Time (New York). To convert this time into your own time zone visit: https://www.timeanddate.com/worldclock/converter.html

From April 18-26, you will be sent a link each day to watch the speakers.

You will have 24 hours to listen to each day’s program, regardless of your time zone. After 24 hours, those interviews will be replaced by the following day's speakers. This is so that as much content as possible can be included in the Summit without exhausting bandwidth restrictions, slowing speed or having to limit volumes during the week.

If you miss some of the sessions, or if you'd like transcripts and videos of the sessions, they'll be available. For your ticket to attend free, or to check out transcripts and videos, just follow the link below.

Please join me for the
2018 Migraine World Summit!

Live well,

 because a migraine is NOT "just a headache"
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New Migraine Education and Support Site Coming May 1

Post_image250Over the years, I've worked on several sites and blogs about Migraine disease, among them, MigraineDisease.com. Mostly due to lack of time, MigraineDisease.com has never been as good as it could be. Well! That's changing!

On May 1st, 2018, an all new MigraineDisease.com will be launched. I've teamed up with Migraine and headache patient educator and advocate Tammy Rome and her husband Brian to build the ultimate site for education, support, and advocacy/awareness. Here are some things to know about our new site:

  • All of the content on the site will be original content, not content copied from other sites and writers.
  • Every piece of content is reviewed by a UCNS certified Migraine and headache specialist for accuracy.
  • Our experienced patient educators have a total of 300+ continuing education hours in "headache medicine."
  • We have a medical advisory board consisting of practicing physicians and psychologists who specialize in treating patients with Migraine and other headache disorders.
  • We're Migraine and headache patients too. We know what it's like to live with these diseases/disorders.

For 18 years, I've written Migraine and headache content for About.com and the HealthCentral Network. Don't get me wrong — they've been good years, and I continue to write part-time for HealthCentral. But, it's also a dream come true to write for a site where my partners and I will set the editorial direction for the site and make our own decisions about editorial and other issues. 

I've had Migraines since I was six-years-old. Have gone back and forth between episodic and chronic Migraine, with times during which I had a Migraine every day. Tammy has both chronic Migraine and Cluster Headaches. We both feel incredibly fortunate to be able to attend the same continuing education conferences that Migraine and headache specialists attend, to have built a network of colleagues we can call upon for information and explanations, AND to be able to write content that allows other patients to better understand their Migraines and/or headaches and be better prepared to work as treatment partners with your doctors. We'll also be continuing to develop ways to offer you the support you need to retain hope and live better. Finally, MigraineDisease.com will always provide you with awareness and advocacy information so you can participate in those efforts — in simple, quick ways and in more in-depth ways, depending on your circumstances and wishes.

We're working hard to be ready to launch our new site on May 1st. For now, please visit MigraineDisease.com, and sign up for email updates and announcements.

Live well,

 because a migraine is NOT "just a headache"
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Sunday Thoughts on Living with Migraine: Remembering John Robert

3Johns1612-300
Three generations of John Robert: John Jeffrey, John Marshall, & John Emry

Good morning, and happy Sunday to my extended Migraine and Headache family.

As some of you know, John Robert, my husband, died unexpectedly on September 18 last year. What many people don't realize is that John was quietly, but steadfastly very supportive of the Migraine community. He started out being very supportive of me in my struggles with Migraine disease. Then, both of our sons married women who have Migraine, and five of our nine grandchildren have Migraine. 

John is a great example of why I dislike it when people say that nobody can understand Migraine unless they have Migraine themselves. John seldom had as much as a mild tension-type headache, but he certainly witnessed my Migraines — many, many times. When we were first married, my Migraines were episodic and not very frequent. The first time he was with me during a Migraine, he was on his knees beside me, softly asking what he could do to help me. He helped me get my meds, get into bed, got me an ice pack, darkened the bedroom, and got our sons to the other end of the house, explaining to them that I needed quiet. 

One evening, after my Migraines became chronic, he asked me to sit down for a discussion. He said that he knew I wanted to keep working, but that he could see how difficult it was to even try to go to work most days. He wanted me to know not only could we afford for me to not work at that point, but that he really wished I'd quit my current job and concentrate on doing whatever WE needed to do to get my Migraines back under control. He emphasized that my feeling well was more important than the extra income. He promised that, as my partner in life, he was also my partner in dealing with Migraine disease and any other health issues that might come along. 

When I needed to see a Migraine specialist, and there were none in our state, he took two days off work every time I had an appointment with my first specialist in Philadelphia, an eight-hour drive from our home. He learned about Migraine with me, voraciously reading everything I gave him about Migraine, treatments, and so on. Extra medical expenses when I wasn't working? He took that all in stride. We cut back on the extras — eating out, cable television, etc. Days when I was so sick I needed him to come home from work? No problem. If I didn't feel well in the morning when John left for work, he usually came home on his lunch break to see if he could do anything for me. Usually, there wasn't anything he could do, but it made me feel better to have him home for a bit.

When I started doing the work I do, John was my biggest supporter. I wasn't sure I could do it, but he was. For the last 18 years, he has been my source of strength and confidence. The deeper I got into my work and the Migraine community, the more John followed both my work and the community. The pay for my work isn't much, but he didn't care. All he ever said was that it would be helpful if I didn't spend more doing my work than I brought in. He didn't mind that I donated a huge portion of my earnings to Migraine and Headache nonprofit organizations. In fact, when my birthday and Christmas came along, he often made donations in my name as gifts to me.

It's taken a while for me to be able to share this with you. I miss John terribly every single day. Today, however, I want to share more of him with you. He was after all, a great supporter of yours too. 

Live well,

 because a migraine is NOT "just a headache"
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Sunday Thoughts on Living with Migraine: Time to Play

Sunday-Thoughts-VioletsGood morning to my extended Migraine and Headache family. I hope last week was as kind to you as possible.

Last week, I learned a valuable lesson from Binx, the cat who owns us. Binx is a young cat, just a year old, so there's still a lot of kitten in him and his behavior.

I believe very firmly that bringing a pet into our home carries the responsibility to do everything possible to see to it that he's healthy and happy. Binx seems to firmly believe that it's his responsibility to follow me everywhere I go when I'm home. It appears that I've become a piece of cat furniture and one of his favorite toys.

Binx500bA few days ago, I went upstairs from my office to get a glass of tea. Binx followed me and was running in circles around me. When I walked down the hall to our bedroom, he ran ahead of me and jumped up on our bed, where be began attacking imaginary things under the blankets. 

Obviously, Binx was in the mood to play. I sat down on the bed, put my hand under the blanket, and let him stalk and pounce on it for a while. Then, he bopped me on the nose with his paw and tore off running down the hall. I did what I was supposed to do at that point, and followed him. As I walked out of the hall and into the dining room, a black flash came out of hiding and wrapped all four paws around my ankle.

After playing with Binx for a good half hour, I went back to my desk. I'd been having trouble with an article I was writing, but suddenly, the rest of it came easily. 

What hit me is that I've been so busy lately that I've not only been neglecting Binx, I've been neglecting myself too. We all need "play time," time away from work and the concerns of daily life. So, that's the lesson Binx taught me, and it's amazing how much it's helped me. 

Do YOU take time to play and relax? Remember that when we're stressed or not taking care of ourselves, we're more susceptible to our Migraine triggers. Take a bit of time to play, and have a great day!

Live well,

 because a migraine is NOT "just a headache"
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Sunday Thoughts on Living with Migraine: Out of My Head

Sunday-Thoughts-VioletsGood morning, and happy Sunday to my extended Migraine and Headache family!

A few years ago, I met two remarkable women, Jacki Ochs and Susanna Styron. They're award-winning filmmakers, and they were at our annual Headache on the Hill Headache and Migraine advocacy event in Washington, D.C. 

The reason they were at Headache on the Hill was the new documentary film they were working on, Out of My Head. 

To explain the film, I borrow their words from The Migraine Project web site:

"Migraine is a devastating but fascinating neurological disease with a compelling story to tell. Alice in Wonderland, Vincent Van Gogh, Sigmund Freud and Saint Hildegard von Bingen all figure into its colorful history.

Our film looks at the entertaining details, and the big questions too — the source and management of illness, the economic cost of human disability, the nature of pain and suffering — while shining a spotlight on the frontiers of neuroscience and the exploration of the brain.

Most importantly, you will hear courageous and wondrous stories directly from migraineurs."

I recently saw the trailer for the film, and it's magnificent. But, don't take my word for it. Watch the trailer yourself:

Out of My Head will debut next month in Vancouver at the International Headache Congress, and I'm excited that I'll be there for its first screening. Plans are underway for more screenings. Keep an eye on The Migraine Project web site for scheduled screenings. You can also find them on Facebook.

Live well,

 because a migraine is NOT "just a headache"
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