Resources

18 February 2012

Are You an Empowered Patient?

There are some great doctors out there. But doctors are not infallible – and the system is far from perfect. And sometimes, says Elizabeth Cohen, you have to make a fuss.

Elizabeth Cohen is senior medical correspondent for CNN’s Health, Medical and Wellness unit. She is constantly trying to help people to get good care in spite of the reality of medical errors, problems with the system, and pressure to rush through decisions.

She has authored a book in which she shares her experience in order to help you, particularly if you are in the USA. Here’s a CBS interview where she talked about her book The Empowered Patient: How to Get the Right Diagnosis, Buy the Cheapest Drugs, Beat Your Insurance Company, and Get the Best Medical Care Every Time:

31 January 2012

Project Migraine Hope gives Migraineurs a Face and a Voice

James News, Resources 3

There’s no doubt that migraine is a misunderstood disease. That means migraineurs, migraine sufferers, are themselves misunderstood – in their relationships, workplaces, and social activities. But a new website aims to give migraineurs a chance to speak.

Blogger Kelly from Fly with Hope has just launched Project Migraine Hope. Project Migraine Hope gives people who are dealing with migraine a chance to speak out and let the world know how serious migraine really is.

It’s also an opportunity for family and friends of migraineurs to share.

Kelly writes:

So many of us have been in a place with our Migraines where we have felt depressed, devastated and lost: when nothing is helping and you are lying alone in a dark room with excruciating symptoms; after another medication trial failed; when insurance did not cover a treatment; when the doctor said "I don’t know what else to do" and/or "It is all in your head"…

We need to share with each other how we hold onto hope and to talk about what keeps us going amidst the struggle during dark times.

There IS hope for the area of more funding for Migraine research. And there IS hope for each individual Migraineur.

Though the focus of the site is to give migraineurs a face and a voice through video, written submissions will also be accepted.

Let’s hear Kelly explain Project Migraine Hope in her own words:

To get you started with ideas, here’s the first part of Kelly’s own story:

Find out how to participate in Project Migraine Hope here.

16 November 2011

Hobbies: Helping or Hindering?

James Resources, Tips 2

We’ve talked before about the importance of having a hobby. Of course this is not just important for migraine or cluster patients, but for anyone with chronic illness – well, for anyone at all.

But the fact is, it can be harder for someone with headache or migraine to do. Maybe because of the symptoms. Maybe because of the fear of when symptoms will strike. But perhaps one of the biggest reasons is because someone with a condition like migraine thinks they’re already not "contributing" enough. They’re not able to do "enough" when it comes to "normal" family and community activities.

Of course, the best kinds of hobbies are a contribution to the community. But that aside, it also seems that we’re more able to contribute in our jobs or in our family when we have a hobby.

Some of these thoughts were echoed in a recent article published at AHDA HeadNotes. Take some time to read A Third Space for Migraine Patients.

Are you having trouble seeing how this could really fit in your life? Not sure why it’s important (and it can be more than just important – it can be revolutionary)?

I suggest you take a look at a book called The Element: How Finding Your Passion Changes Everything by Ken Robinson Ph.D. Although I don’t agree with the author’s approach on everything, he does demonstrate with real, practical examples how and why we’ve been doing a poor job helping people – and ourselves – really find our passions in life.

Here’s the book description:

The Element is the point at which natural talent meets personal passion. When people arrive at the Element, they feel most themselves and most inspired and achieve at their highest levels. With a wry sense of humor, Ken Robinson looks at the conditions that enable us to find ourselves in the Element and those that stifle that possibility. Drawing on the stories of a wide range of people, including Paul McCartney, Matt Groening, Richard Branson, Arianna Huffington, and Bart Conner, he shows that age and occupation are no barrier and that this is the essential strategy for transforming education, business, and communities in the twenty-first century.

Take the time to develop a hobby, and to delve into what you can be passionate about. It has far more value that you may realize at first.

10 October 2011

Win a Free Migraine Barometer!

James Resources, Website news 65

Alas, the Migraine Barometer is sold out. Or… is it??

Well, yes it is. But I have a confession to make. I hid one up my sleeve … just one … so that I could give it away for free.

I know there are many of you who are waiting for it to be available again. Well, who knows? You could be the one to win this one!

To clarify – this is the new edition of the Migraine Barometer, featured here. It will be shipped to you (if you win, of course), after the closing of the contest.

We’re doing a special contest this time, where you’ll have multiple chances to win – by doing things like "Liking" the Headache and Migraine News Facebook page, by tweeting, and by leaving a comment. Just follow the instructions below!

This time, due to the nature of the contest, it’s only open to US residents. Don’t worry – we’ll have another contest for everyone! 🙂

The contest closes 2 weeks from today, on the 24th of October.

6 October 2011

Lily’s Mom

James News, Resources 0

Dr. Edmund Messina is back – once again wanting to spread the word about headache, migraine, and the situations that people have to deal with in the midst of chronic illness.

You might remember the previous work of Dr. Messina and his team – Life and Migraine. The goal of this first film was to give us a glimpse into the life of someone with migraine, and to help us see what they had to go through to get help.

I just received an email from Dr. Messina about his new movie (he wrote, produced, and directed), "Lily’s Mom", starring Kimberly Harsch. I’m hoping to review it in a few weeks time.

Meanwhile, here’s a brief synopsis:

Mary is a mother who comes from a dysfunctional background. She struggles to be a good role model for her 8 year-old daughter, Lily, in the midst of crippling headaches, loss of job, deteriorating marriage and abuse.

The story is told through her conversations with her therapist as she learns to become her own advocate and overcome what seem to be insurmountable obstacles, including deaths, poor health-care and being thwarted by bizarre people in her life.

Mary’s struggles and eventual triumph are driven by her need to give little Lily the ‘normal’ life she herself never had. The that the personality disorders and psychiatric characteristics of the characters are medically accurate, making this very touching drama ring true to the viewer.

If you want to see the trailer, click the image below to go to YouTube:

For more, visit the official Lily’s Mom website. Now that Dr. Messina is done with this project, he’s looking forward to other similar works to highlight the struggles people have dealing with headache and migraine.