This cold winter morning I've been scrolling through page after page of comments and stories from people who have Migraine disease and other headache disorders. These people are my heroes. They live with pain and other symptoms, the losses in their lives that Migraines and headaches have wrought, and the stigma that still pervades our society.
Reading these comments and stories brought tears to my eyes, but they also called out to be shared so these people aren't just screaming into the wind.
If you're living with Migraine or another headache disorder, you may recognize yourself in the words of others, and those words validate that you're not alone. If you don't live with Migraines or headaches, what these dear people have said can serve as a windown into the lives of people who are.
Here are some of those comments and stories:
"If you only knew what an epidemic it really is! I have spent at least 10 out of the last 20 yrs. in bed. Know one is paying me disability, because I didn't hold down a job long enough in the first place. We desperately need your HELP!!"
"I have suffered for so many years with mgraines I often contemplated suicide because of the pain, it has left me finacially bankrupt and mentally devasting missing years of my childrens and grandchrildrens lives, thanks to hard work and the new techknowledgy and medicines my migraines are getting better but they still control my life I still miss out on so much living, there is still so much to do"
"In the first two years after my diagnosis in 2007 I had over 200 days of migraines. First, I lost my job, then my husband, my home, 85% of my hair, and friends that I don't have the energy to keep up with. I have tried almost every treatment protocal in the past 4 years with mediocre success. I am 45 and taking an Alzheimers medication as a preventative treatment. Treximet which was recently released by the FDA has been a lifesaver. We need more solutions like it. There has to be attention to understanding and curing this dehabilitating disease."
"I have chronic migraines, ones which impact me severely and daily. I have an Engineering degree but can only hold down a basic computer repair job because it's difficult to think when you're in so much pain. I've had to cancel every one of my hobbies and activities, either due to the pain itself or simply from skipping so many days due to this illness. It's easy to dismiss these as "just another headache" if you've never experienced them...I foolishly once did this as well...but please understand that when any light and sound causes you immense pain, you effectively cannot do a single thing. You lose friends, you miss out on activities and special events, and your life essentially just stops as you can do nothing else."
"Nobody knows what a living hell constant migraines can be; you just want to give up your will to live b/c life is not worth living w/this pain."
"This biological, neurological disease that I have suffered for over 50 years has taken precious time from me, and has cost me my job of 18 years...I have had open heart surgery with quintuple bypass, and a bifemeral artery bypass...I have no health insureance so my migraine drugs costs 40 dollars per pill....I could go on and on...."
"I live in bed due to neverending headaches and take multiple narcotics to keep the pain to a dull roar. I have no life, no fun. I leave the house to go to the doctor, rarely for other reasons. There needs to be more research into why people end up like this. This is no way to live."
If there's someone in your life who has Migraines or headaches, I hope this has given you some insight into their lives. They need your help and understanding. For those of you who live this yourselves, let's keep each other in our thoughts today and hope everyone is having a day that's as pain-free as possible.
The problems of living with Migraines and headaches seem monumental, and they are. But, decidated researchers are trying to improve the available treatments and quality of life for everyone affected. To be successful, these researchers need more funding, and to get more funding, we need the American people in general and Congress specifically to better understand Migraine and other headache disorders and what they do to the lives of American citizens. To that end, the Alliance for Headache Disorders Advocacy (AHDA) is currently asking people to sign a petition, one that AHDA advocates will personally deliver to members of Congress on March 27. It takes less than a minute to sign it. You simply follow the link and enter your first name, last name, email address, and ZIP code.
If you've signed this petition, thank you from the bottom of my heart! If you haven't signed it, please take just a moment to do so. Please use your real, full name or Congress will disregard your signature. Your name will NOT be revealed to anyone else. Please use a different email adddress for each signer. Also, if you would, please, share the link with your friends, post it to Facebook and Twitter? We all appreciate any help you can offer.
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.

© Teri Robert, 2012
Last updated January 19, 2012.





























Living with Migraines - Thoughts and Music on a Sunday
This week is no exception. Well, maybe it is in a way. It's been a hectic couple of weeks with wrapping up 2011 and starting into 2012, and several things have kept everyone who lives with Migraine and other headache disorders in both my thoughts and my actions.
This morning, I received an email that brought tears to my eyes and a spectrum of emotions along with the tears. WEGOHealth is running a Health Activist Awards campaign, and nominations for 2011 awards closed the end of December. The email I received this morning notified me that I've been nominated as a "Health Activist Hero" It included a copy of what the person wrote when they nominated me. Wow. They didn't give me the name of the person who nominated me. I could make a few guesses, but I really don't know who it was. Every day, I count myself fortunate to do the work I do because I'm able to help people with Migraines and headaches, people I can relate to because of how Migraines have made a mess of my life at times. This email left me both humbled and elated. It confirmed for me that we can make a difference, one person at a time. Wow. To whomever nominated me, thank you.
On Facebook, Nancy Bonk, Ellen Schankenberg, and I created a new group, Migraine Info & Support for the Proactive Migraineur. We made it a "closed" group so people have to ask to join. That lets us keep the spammers out or kick them out if they fool us into letting them in. It also lets us make it a safe place for Migraineurs to come for support in a place where they can talk with people who understand and will support them, then help them find proactive solutions to their problems. It's doing really well.
Here's why we're working on this petition - One of our biggest problems is lack of good treatments, and a big part of that problem is lack of adequate research funding. That, in turn, is largely a result of Congress and the public not understanding the impact of Migraine and other headache disorders. The shorter term results would be better Congressional and public understanding of all of the disorders and their impact. The longer results would be that understanding leading to more research funding, better treatments, more well-trained health care professionals, improved health for Migraine and headache patients, and a decrease in the stigma surrounding the disorders.
If you haven't signed the petition yet, please sign it? It honestly will take you less than one minute, and you'll be helping millions of people. Sign the Petition.
Now, just for fun, I want to share something with you. Someone sent me a YouTube link on Twitter this morning. I enjoyed it so much I thought I'd pass it along. Enjoy!
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 January 8, 2012.
Posted on January 08, 2012 at 11:39 AM in Awareness and Advocacy, Commentary, Living Well, Migraine Disease, Nonprofit Organizations | Permalink | Comments (0) | TrackBack (0)
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