He Said WHAT About Your Migraines?

MimeQuestioningToday's Health Activist Writer's Month Challenge prompt is to write about the most ridiculous thing we've everheard about health or our condition, so for me, that means Migraine.

The problem with this challenge is that there have been too many of them. It was beyond diffiuclt to choose, but I did it. I chose this statement not only because it's so ridiculous, but because it has the potential to cause so much harm. This is a statement made to a Migraine patient who had been going tohim for just six months. Here it is...

"Sorry, but there's nothing more
that can be done for you."

What?! Are you freakin' kidding me? Anyone who knows me also knows what my response was to that. It was, "Fire his sorry butt!"

For those not familiar with Migraine disease and its treatment, let me elaborate about why that statement is so riduclous and why I say it's potentially harmful...

  • This statement was made after only six months of trying to help the Migraineur find effective preventive treatment. Six months! It takes up to three months to give a medication a fair trial and know if it's going to work.
  • There are now so many medications being used for Migraine prevention that it would take over 25 years to give each of them a three-month trial.
  • How pompous was this doctor? Just because he didn't know anything else to try doesn't mean "there's nothing more than can be done." A good doctor would have said he didn't know what else to do and would have helped the Migraineur find another doctor to work with.
  • Patients often believe idiotic statments such as that one, and when they do, they sometimes give up.
  • The WHO has stated that a severe Migraine attack is as debilitating as quadriplegia. How could a doctor just give up and set their patient up to give up too?

Obviously, that statement made me angry. I generally do try to be a bit more tacful when I speak about other people, but let's face it, this docto is an idiot. More than that, he's an uncaring, unfeeling idiot. If he doesn't care more than that for his patients, he has no business being a doctor. He gives other doctors a bad name. Shoot, he gives other human beings a bad name!

image from www.msteri.comIf a doctor has ever made that statement to your or implied as much, don't just walk away from him or her - RUN! Resist the temptation to smack the doctor silly. You don't want to get arrested, and you're a bigger person than that anyway. It's prefectly fine to tell him he's an idiot. In fact, I'd be hard pressed not to if a doctor ever said that to me.

But... know this... there are some fabulous doctors out there who won't give up on us unless we give up on them. They're intelligent, caring, passionate, and compasstionate professionals who truly care about us as patients and want to help us reduce the burden of Migraine disease and improve our quality of life. Don't let one idiot stop you from seeking good care from anotehr doctor. That would let the idiot win.

Finding effective Migraine treatment can take time and patience, but it can be done, and it's so very worth it. Look past the white coat to the person underneath. Find a doctor who cares and will work with you as a treatment partner.

Nothing more that can be done?! Grrrrrrrrrrrrrrrrrrr.

HAWMCBannerThis post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

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© Teri Robert, 2011
Last updated November 28, 2011


I Still Remember Abi and Her Last Migraine

RememberingAbiI sitll remember a young woman named Abi and the last Migraine she had. Abi was 21-years-old, just shy of her 22nd birthday, and she was having horrible Migraines. She came to a live online chat I was hosting one night and told us that she was on the third day of a horrendous Migraine. It was a Wednesday evening in October, 2001. I and the others in the chat room pleaded with her to get her parents to take her to the emergency room. She told us that she couldn't because they'd accused her of faking her Migraines for attention. Her sister was having problems with depression, problems that needed serious attention from their parents, and they thought Abi was "acting out" because her sister was getting more attention.

On Friday, I received an email from her fiancé, Jeff. The Migraine Abi had on Wednesday had continued and caused her to have a stroke. She was in the hospital, and he wanted me to pray for her recovery. I did pray for her, and Jeff kept me updated until Abi was able to go home and get back in touch with me. We thought the worst was over, and we hoped that her parents understood her and her Migraines better.

That's not what happened. A few weeks later, another Migraine struck and, with it, another stroke. This time, Abi didn't survive the stroke. I still have emails from Abi and Jeff as well as the transcript from that Wednesday chat and transcripts from some instant messenger conversations with Jeff. After Abi passed away, Jeff said,

"I've been spending the last few days in Abi's room. Cleaning up her things, going through stuff. Anyway, Abi kept a journal, wrote in it every day. She knew her time was coming, and wrote a letter asking me to tell you some things she wanted to say..."

Jeff then emailed me what Abi has wanted to say to me. She said,

Teri,
I wanted to take some time to thank you for all you've done for me, and for everyone.  You have a tremendous heart, a ton of love and understanding. Your soul is one of a kind.  I'm sorry to have worried you, I'm sorry I didn't listen to you and get help right away.  God led me to you before I died so I could know and appreciate your spirit.  Thank you! Please know that I am not hurting anymore, I am with my Heavenly Father and joyfully wait to see you here in heaven some day.  Can you do me a favor?  Could you please help others understand about migraine, and that getting immediate treatment is important?  I will be with you always.  I love you Teri.  Please be kind and gentle with yourself.  Thank you for everything! 
Love,
Abi

I will ALWAYS remember Abi, her last Migraine, and what I learned from her. I will always honor her last request of me and continue to work to help others understand Migraine better. If I can prevent what happened to Abi happening to even one other person, it will be work well done, time very well spent.

Some people think I'm a bit obsessive when it comes to educating people about Migraine disease, increasing awareness, and reducing the stigma. Maybe this post offers a bit of insight to what's behind my vehemence. Here's a short poem I wrote about Abi:

Too Short

almost 22-years-old
almost, not quite
she visited a few times
then was gone
she needed
but gave more than she asked
then she was gone
she loved and laughed and cried
but then she was gone
was it with a whisper
or with a shout that she left?

Abi, I'm keeping my promise. I miss you.

HAWMCBannerThis post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

Live well,


 

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© Teri Robert, 2011
Last updated November 26, 2011


Migraine - Never Have But Want To; Never Have, Never Will

NhbpmLogo150Thinking about Migraine and my work, today's Health Activist Writer's Month Challenge prompt is easy! The challenge:

Never Have I Ever. You stick to your guns – now tell us about what. What is something you’ve never done but want to. What’s something you’ve never done and won’t budge on?

I've never been able to attend the International Headache Society's International Headache Congress (IHC) when it was held outside the United States. The IHC is held every two years and offers a superlative opportunity for learning and networking with Migraine and headache specialists from around the world. I attended the last IHC held in the U.S. in Philadelphia in 2009. It was amazing, so amazing that I want to attend all of them.

One thing I've never done and never will do is to give up and let Migraine disease win. There have been times when I was curled up in bed five or six days a week, all day, with a Migraine from hell, but I didn't give up on finding help and effective treatment. I sought help from a Migraine specialist, and for several years, had one Migraine a month or fewer. Because of some other health issues and having to reduce the medications that were helping prevent my Migraines, they've gotten more frequent again, but I'm not giving up. I'm seeing a specialist next week.

To anyone with Migraines, I would say, "Don't give up!" There IS help out there. If your doctor isn't able to help you, get to a Migraine specailist. It's important to know that neurologists aren't necessarily Migraine specialists, and Migraine specialists aren't necessarily neurologists. If you need help finding a specialist check my listing of patient recommended Migraine and headache specialists.

HAWMCBannerThis post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

Live well,


 

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© Teri Robert, 2011
Last updated November 25, 2011


A Mascot for Migraine?

GryphonToday's Health Activist Writer's Month Challenge prompt is to give our condition or community a mascot. A mascot for Migraine? I have to admit that this one stumped me a bit. To me, mascots are generally positive, and it seems strange to choose one for such a dastardly disease.

As I thought about it, I realized that a mascot for the Migraine community is appropriate. A mascot to represent the people who fight this disease every day, without giving up.

Then, the choice was a problem. I sat here and thought of, then rejected, many possible mascots. Finally, I chose a mytholoigcal creature, the gryphon or griffin. The gryphon is a combination of a lion and an eagle. Here are a few of my reasons for choosing the gryphon:

  • Both lions and eagles are perceived to be strong, and Migraineurs are strong.
  • "Eagle vision" can be helpful in identifying triggers, noticing the early symptoms of the Migraine prodrome, and more.
  • The gryphon, like Migraine, is complex.

HAWMCBannerThis post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

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© Teri Robert, 2011
Last updated November 24, 2011


Children... Adults... Migraine... So Many Thoughts!

On this Monday morning, as I start the new week thinking about all the people I know who are starting the week with a Migraine, I'm also starting it with today's  - to write an ekphrasis post. Ekphrasis is writing about an other art form, and this challenge is to choose an image that inspires us positively or negatively and free write about it. The challenge is also to give ourselves exactly 15 minutes to write without stopping or editing.

So, be warned. I'm going to insert the image, then write and post, without editing...

ChildBandagedBear400
Migraine is a vicious, insidious, pernicious, hateful, insidious, malevolent disease. About the only good thing that can be said about it is that it isn't sexist or racist... it doesn't discriminate against the young or the old. It will brutalize anyone.

Migraine first struck our granddaughter Alex when she was just 2-1/2, still a baby... too young to tell us what was wrong, but not too young to suffer. She hid her face against Becky (her mother) to avoid light. She cringed at every sound. And she held her tiny head and cried in pain.

When it comes to not caring about the burden of a disease when allocating research funding, the NIH doesn't discriminate either. There's no correlation between disease burden and research funding, and FDA officials I've had contact with don't discriminate based on age, gender, or race any more than Migraine does. The funding seems to go to the squeakiest wheel, regardless of whose needs get ignored.

The stigma associated with Migraine acts the same way. Stigma doesn't give a damn about age, gender, or race. It smacks everyone and anyone down. What's truly upsetting about stigma is that it's PEOPLE who create and perpetuate stigma. It's PEOPLE who make other people feel like crap about themselves just because they have Migraine, a genetic neurological disease. PEOPLE who do this to strangers, family, friends, life partners, children, anyone - without discrimination. PEOPLE acting out of ignorance, being judgemental, being "doody-heads," as our grandson Johnny would say.

You! Yes, you! Do you, even without realizing it, add to the stigma and misery associated with Migraine in how you react to people with Migraines? Do you tell them, "It's just a headache. Take some Tylenol?" Do you criticize your coworker who missed work because of Migraine? Do you continue to wear perfume or fragranced lotions to work even though a coworker has Migraines that are triggered by fragrance? Do you get angry if your friend has to cancel out on going somewhere with you because he or she has a Migraine? Have you quit calling a friend because they're so often unable to do things with you because of their Migraines?

Oh, yeah. Migraine will strike anyone. It doesn't discriminate. What's even more disturbing is that many people are the same way in the way they treat people with Migraine, and that perpetuates the myths and misconceptions AND the stigma associated with Migraine.

Stop and think about it. Do YOU feed into the myths, misconceptions, and stigma? If you have Migraines, you may be unwittingly feeding into it. When someone makes a comment or otherwise demonstrates that they haven't a clue when it comes to Migraine, how do you react? Those of us living with Migraine owe it to ourselves and other Migraineurs not to just "let it go." We need to be educating other people when we encounter these problems. It's old and cliché, but it's true. If we're not part of the solution, we're part of the problem. If you don't have Migraines, you're bound to know someone who does. There are more than 37 million of us in the US. How do you respond to the people you know who have Migraines? Do you respond with understanding, riducule, or indifference?

WAKE UP, PEOPLE! This disease is difficult enough to live with without us making it worse for people. Learn, share, educate, help dispel the myths and bust the stigma. Look at the photo above that I've been sitting here looking at. What if she were YOUR child?

Whew! I didn't really mean to go off on a rant or step up on my soap box, but it happened. I hope you'll think about what's I've said.

HAWMCBannerThis post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

Live well,


 

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© Teri Robert, 2011
Last updated November 21, 2011


Laughter is Good Migraine Medicine

CatAndDolphinWhether you're dealing with Migraines, another health issue, or no health issues at all, laughter truly is good medicine. It impacts us physically as well as emotionally, leading to better health and a longer life.

It's easier to cope with health issues and life in general when we can have a good laugh, relax a bit, and take life not quite so seriously.

A while back, on The Ellen DeGeneres Show, Ellen showed a video of a cat and a dolphin playing. It was one of those moments that has you saying, "Awwwwwwwww," and "How sweet is that?"

I bookmarked that video on YouTube, and today I want to share it with you. I hope it brings you a grin and a chuckle and one of those "all's right with the world" moment that it always gives me. We can use more of those.

Enjoy!

HAWMCBannerThis post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

Live well,


 

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© Teri Robert, 2011
Last updated November 20, 2011


Imagine My Blog as a TV Show

NhbpmLogo150Today's Health Activist Writer's Month Challenge:

"My TV Show. Your blog is being turned into a TV show! Congrats – you’ve earned it. In fact, you get to co-write it. Write about the TV show based on your life or blog."

The new weekly 60-minute television show Putting Our Heads Together  combines features of educational programming with reality show programming.

Host: Patient Educator and Advocate Teri Robert

Alternating Co-Hosts:

  • Dr. Rob Cowan
  • Dr. David Dodick
  • Dr. Peter Goadsby
  • Dr. Richard B. Lipton
  • Dr. Elizabeth Loder
  • Dr. Alan Rapoport
  • Dr. Stephen D. Silberstein
  • Dr. David Watson
  • Dr. William B. Young
  • Dr. John Claude Krusz
  • Dr. Sanjay Gupta
  • plus more Migraine researchers and specialists

Each week, a small group of Migraine patients will join Robert and her co-host to discuss topics related to living with Migraine, a potentially debilitating neurological disease. The first 30 minutes will be utilized in discussing and educating the audience about the symptoms, pathophysiology, and impact of Migraine. During the second 30-minutes, the guest physician will review the case of one of the Migraineurs, offering comments, insight, and suggestions to help the patient and their physician and educate the audience.

Some of the topics covered in the first segment of the show include:

  • Cortical Spreading Depression - What Is It?
  • The Phases of a Migraine Attack and Their Potential Symptoms
  • Migraine Prevention - Why Is It Important?
  • Doctors and Patients Working Together As Treatment Partners
  • Identifying and Managing Migraine Triggers
  • Dispelling the Myths Surrounding Migraine
  • Busting the Stigma Associated with Migraine Disease

Location:

Due to environmental Migraine triggers, Putting Our Heads Together will be on a specially designed set that will not be used for other shows and will be cared for by a dedicated crew. Lighting will be as soft as possible for television due to the increased sensitivity to light often experienced by Migraineurs. Cleaning products will be carefully selected to avoid their triggering Migraines in the hosts and guests. The set will be fragrance-free with no perfume or scented products to be used by cast, crew, or guests because of the potential for fragrance to trigger Migraines.

Show Dedication:

The show will be dedicated to the memory of Dr. Fred Sheftell, and the credits will reflect this dedication.

Theme Song:

The theme song for the show will be "Migraine Blues" by Dr. Fred Sheftell.

 

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

Live well,


 

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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, 2011
Last updated November 2, 2011