Saturday, June 9, 2012

Migraine Awareness Month #9: "Daydream Believer"

AwarenessMonth2012BC2

 Today's prompt is:
Migraine Awareness Month Blogging Challenge #9: "Daydream Believer." Describe your dream day - without a Migraine to hold you back.
For today's blog prompt I was honored to be asked to post on the American Headache Society's ACHE blog.  You can find my post here!

Like many chronic Migraineurs, I've had plenty of time to ponder what I would do if there was nothing to hold me back and I could do anything in the world.  Of course my post would have something to do with horses ;)

What would you do on a perfect, Migraine free day?

Friday, June 8, 2012

Migraine Awareness Month #8: "Let there be light"

AwarenessMonth2012BC2 Today's prompt is:
Migraine Awareness Month #8 "Let there be light" Most Migraineurs have issues with light sensitivity.  What do you do to cope with it?
Today's blog prompt is featured on Migraine.com: Two dozen tips for light sensitive Migraineurs.  

I hope you enjoy it and can find something to try you haven't considered before!

Thursday, June 7, 2012

Migraine Awareness Month #7: List Topper



AwarenessMonth2012BC2
Today's prompt is:
Migraine Awareness Month #7:  List Topper. There are lots of myths and misconceptions about Migraine. Which one tops your list as the biggest and most common? What can we do to get the truth out there?

There are so many Migraine myths that plague our community of patients, it’s really tough to choose just one. This is one I seem to see addressed by patients almost every day:

MYTH- There is a magical pill that will take all your Migraines away and make you all better.

The fact is, although we do have some medicines available to us now that do work fairly well for many people, there is no one medicine that treats/prevents Migraine for everyone.  

Moreover, there is no cure.

Migraine is not like a broken arm.  If you break an arm, the bones are put back where they belong, the arm is cast and healing takes place.  When the cast is removed… voila!  You are healed!

This type of one-size-fits-all medicine is often called “cookbook medicine”.  Treating a disease or disorder is thought to be like following a recipe in a cookbook.  Reality for our disease is very different.

Migraine is a genetic neurological disease.  The majority of drugs we use to treat and prevent attacks are not very effective because they were never designed to actually treat Migraine in the first place. 
In the last 50 years, there has been only one single unique type of medicine designed for Migraine.  All the rest that have come out since that time are “me too” drugs, similar, yet slightly different.  We simply don’t know enough about how a Migraine attack actually happens to design better treatments for patients.  

Because the physiology of each patient’s system and brain is different, the treatments that will help them are different.  

There is no one–size–fits–all magical pill that will make you better. 
In fact, the definition of *better* is quite different for patients than it is for physicians.  

In the doctor’s world, the word better usually means a reduction in frequency/severity of 50%.  In the patient’s world, the term better means the Migraines are gone, or at least extremely infrequent. 

How do we change the “magical pill” myth?

I believe in education.  In my dream scenario, there would be an in-depth online class for the newly diagnosed to take that would teach them about Migraine.  To eliminate communication problems and any disconnect between physicians and patients and their abilities and expectations, this multi-leveled class would be designed by a team of physicians and patients to take the patients from 0 – 60… going from no knowledge, to a good working knowledge of their body system, the pathophysiology of their disease, it’s diagnosis, treatment and prevention.

This free class would be open to everyone – patients, family, friends, care partners.  Insurance companies would offer discounts for patients that successfully complete the classes, and physicians would insist patients enroll regardless of their insurance situation, because an educated patient is a better patient. 

Each time a new medicine comes out, pharmaceutical companies would design a class to be taken on the drug.  Those who are insured either by private or government plans would be required to pass the class for the medication they are prescribed, or a discount given for those patients who comply.

I really think some form of this idea is the future of medicine.  Physicians no longer have the time to spend teaching their patients the details of their disease, but patients are insisting on being educated, and rightly so.  Insurance companies know that informed patients spend less health care dollars.  Patients are used to going online to find health information, and generally speaking, want to know about their conditions.

Wednesday, June 6, 2012

Migraine Awareness Month #6: "Name That Tune"


AwarenessMonth2012BC2Today's prompt is:

Choose a theme song for Migraine disease or headache disorder and find a video for it.

I can’t honestly say this is the song I would choose as a theme song for Migraine, but I will say that it sure is the theme song for current Migraine treatment.  

I’m tired of no new treatments for Migraine. I’m tired of more “me too” drugs.  I want research into the pathophysiology of Migraine so we can get down to business finding new unique treatments that target Migraine more specifically.  I want tests that can diagnose Migraine, not a bajillion tests that just rule out other conditions.  

So, the song I pick for today’s blog prompt is:

Dr. Fred Sheftell’s "Triptans Du Jour"


To understand fully what I’m talking about, you’ve really got to watch the full video.  Even my hubs stuck his head around the corner to watch what was going on and laughed and laughed.  His opinion – this is the song I needed to use for this prompt, because even he could understand the frustration of the situation Migraineurs are in.

Fred Sheftell is a man I never met, but every time I hear an advocate or doctor talk about him, there is a softness that comes to their voice and tears to their eyes.  I get a bit wispy because I almost feel like I know him now, and I miss him even though I’ve never met him.  

I’m told Fred Sheftell was one of the most caring, wonderful patient and education centered headache specialists on the planet.  He was so patient and education centered, that upon his death last year from cancer, the AHS created the Fred Sheftell MD Education Center which you can find here.  

For those patients who have not been lucky enough to find a physician that cares about them and treats them instead of their headache, I suggest this page to you


Tuesday, June 5, 2012

Migraine Awareness Month #5: Do That To Me One More Time

AwarenessMonth2012BC2Today's prompt is:

Migraine Awareness Month #5  What comfort measure do you find helps you enough during a Migraine that you go back to it again and again, and how do you use it?

My go-to comfort item that gets me through Migraine attack after Migraine attack, has been posted on Putting Our Heads Together 

Monday, June 4, 2012

Migraine Awareness Month #4: June is Bustin Out All Over

AwarenessMonth2012BC2Today's prompt is:
Migraine Awareness Month #4: "June Is Bustin' Out All Over"  What's the best tip you can offer others for having some summer fun despite Migraines?
I have offered up a lot of tips over the years.  Most of them practical. We've talked about making a Migraine bag that's packed and ready for your next attack, packing a bag for small children so it's easy to keep them busy during your next Migraine.  I've talked about traveling with your meds, minimizing triggers while traveling, and, well the list goes on and on.

My best tip to having some summer fun despite having chronic Migraines is this:

Plan to be impulsive!

Being an impulsive chronic Migraineur takes some durned careful planning (as you'll see at the end of this post).  Stop and think about it... if you were to get a good day to spend with your family, what would you do? Most really amazing things take planning, even if it's just a little bit.  The thing is, to have an amazing time we Migraineurs need to be able to drop everything and go, and unless you live alone with an unlimited bank account, that's pretty tough to wrangle unless you..... plan for it.

Here are some impulsive things our family has done:

  • Impromptu barbecue with swimming and games in the back yard.
  • Taken the family to the lake to swim.
  • Danced in the rain and played in the mud in the yard.
  • Camped overnight nearby.
  • Gone boating.
  • Gone to the racetrack.
  • Had water fights.
  • Visited a museum in Kansas City.
  • Had raucous family game nights.    
  • Team painted a room of the house.
  • Crawdad hunting in the mud.   
These things might sound like everyday activities to many families, but when I'm stuck in bed more days than not, these were really big deals for us.  What made them even better was that I had an idea at the beginning of the summer some of the things we might like to do if I got a good day.  We took the time to buy the supplies or put away a little cash that we needed to do these ahead of time, so when a good day hit me, all we had to do was grab and go. 


 
Try making a list with your family of fun activities you can do.  When a good day hits, grab it, pick something and GO!



I guarantee you that some of the best times we've ever had with friends and family came when we impulsively did something fun. We still talk about some of them like:


  
  • Hubs singing karaoke with friends - "Hot Blooded" will never be the same for any of us!
  • The crawdad hunt where we ended up COVERED in thick gray mud. The neighbors even took pictures, but were laughing so hard they didn't realize there was no film in the camera      
  • All the games of croquet with neighbors in the yard. We sometimes changed the rules and actually wore the set out
  • The many water fights we had while bathing horses where we soaked each other so badly our pants nearly fell off  
  • The day we went to the racetrack, decided to buy a racehorse, and did!  This was topped by the first race she won days later, and I actually got to BE there!   (I've got the piled on hair behind the pink shirt behind the banner. The rest of the family and our partner is with me)



Alright, I admit, adding a racehorse to the farm was maybe a bit beyond impulsive, lol. (See the story here) However, I must digress here and say that the trip was my anniversary *gift*, the purchase took 3 days to happen, she became my Hubs' horse and for the first time ever he took an interest in what was going on out at the barns.  Just because it was impulsive doesn't mean it wasn't veeeeeerrrrry carefully thought out and planned ;)

What are some of your best impulsive fun memories with your family?   

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com.

To help raise awareness about Migraine, please Tweet this post with the hash tags #NMAM and #NMAMBC and share it on your Facebook page. Thank you!






Sunday, June 3, 2012

The Race Horse Story

Once upon a time there was a little girl who loved horses more than almost anything else in the world.  She dreamed all her life of having one to call her own.



The little girl worked hard, and she paid her way to horse school.  With encouragement and help from her instructors she got a scholarship to horse college far away, and she learned how to teach and train and breed horses.  She was offered jobs riding spectacular horses all over the country, and turned them down for the love of a boy.

Along the way the girl grew up.  She trained horses for others, she gave lessons to children.  She rode hundreds of horses that weren't her own.  She leased horses to ride, but was forbidden to own one herself so long as she lived at home.  Her parents told her "You can have horses when you are all grown up."

The girl moved away and married the boy, but they were poor.  The girl was given a choice by doctors, and she chose to have babies instead of ride horses.  She thought, "I have waited for my dream so long already, a couple more years will be alright.  I will have patience so I can have children." 



She planned and saved all her life.  The boy had made her a promise, and she had only 10 more years to wait.  She waited patiently and counted the years and the months and the days.  But, her babies were sick and needed her, so she kept on waiting and planning to make her dream come true.

One day, she suffered a serious back injury, and was told her life with horses was over.  But the girl was stubborn. She hid the pain as best she could, working hard to make herself better.  She decided she would make a way to have them in her life again.



One day her dream came true.  She bought a small hackney gelding to train for resale.  Soon she had a whole stable full of horses, including the gelding who loved her, whom she could never bring herself to part with.  She wasn't able to ride very much, but she was training and teaching and breeding horses again, and she was finally content.  She knew how very lucky she was.



The girl had made her dream come true, but the boy was not happy.  He did not like horses.  He was afraid of them.  He thought she must love the horses more than him, and this made him sad.

One day the girl and her veterinarian were talking.  He owned race horses.  He said, "Why don't you bring the boy to the racetrack tonight and be our guests?" and the boy reluctantly agreed.



While at the racetrack, the boy was introduced to owners and trainers and jockeys who talked to him about horses.  He had picked many winning horses that day and had fun.  This surprised him.  The veterinarian asked the boy and the girl if they might want to own a race horse and be partners with him and his wife.  The boy laughed, but the girl said, "We should talk about it."

When the phone rang early the next morning, the veterinarian said, "Well, what do you think?  Are you ready to buy a race horse?" and the boy said "Okay."

The next day, the girl went alone to the race track to meet the trainer and see a horse named Brandy.  Because the horse was nervous, she only got to look at the horse a few seconds before having to decide if this was "The One."  She and the trainer spoke quickly then went to the race office before time ran out.  She signed her name on a card, punched it in a time clock, and held her breath.


The bay mare she chose ran in her race a few moments later.  She did not place first, but she was not last.  When the race was over, it was announced on the loudspeaker that the mare had been purchased (called a claim) by the girl, the boy and the veterinarian and his wife.  The trainer took a halter to the horse and jockey.  The mare was theirs.  That night the girl gave the horse to the boy.

Two days later the phone rang.  It was the veterinarian.  He said "What do you think about running the mare on July 3rd?"  The girl said "But that's in only 3 days."  The veterinarian said, "That's okay.  The trainer thinks she can do it."

On July 3rd, the boy and girl and their two children asked their friends to come to the racetrack with them.  They did not tell the friends that they had bought the mare.  They had not told anyone they bought the mare.  They did not tell the friends that they personally knew the horse that was going to run in the race they came to see.

Everyone had fun that night.  The friends yelled for every horse whose jockey had pink silks because the shirts were "pretty".

At race time, together they went to the fence and watched the bay mare walk up and be saddled.  They watched the trainer and they watched the jockey in the bright pink silks as he was boosted onto the mare.

The girl and the boy and their friends walked to the fence next to the track with the veterinarian and his wife.

The horses were off!



The sun was shining and the track was good that day.  Everyone watched the horses leave the gate at the other end of the track, looking for the jockey with the pink silks.  The announcer called the race and excitement filled the air.  The boy and the girl held their race programs and yelled their hearts out, and their friends yelled too.  The veterinarian and his wife did not yell for the horse in the beginning.

As the horses came around the curve, the boy and the girl lost sight of the bobbing pink silks, but they could hear the thunder of pounding hooves as the horses drew nearer and nearer their spot on the rail.  People all around them began to scream and the girl and boy began to jump up and down as the bay mare with the jockey in the pink silks passed all the other horses and pulled ahead.

With great leaps the bay mare passed the leader and kept pounding the earth.  The boy and the girl could hear her great breaths as she passed them on the finish line. 

The announcer yelled "And it's Brandy O'Brannigan, wholloping 'em here tonight!"

When the race was over, she was 6 lengths ahead of the rest of the horses.  She had won.

The boy and the girl hugged each other and their friends and began walking behind the veterinarian and his wife to the winner's circle, dragging the friends behind them.  They had told their friends that the mare belonged to the veterinarian and were all invited to the winner's circle for a photo.

After the photo was taken next to the steaming, dripping mare, she was walked off by the trainer headed for the barn, and the boy and the girl looked for their friends.

They were nowhere to be found.

When they were found, the friends said that they were embarrassed at being included in the photo of a horse that belonged to someone they didn't know.  They had ducked out just in time.

The boy and the girl slapped their backs and laughed and finally told their friends why they dragged them in the winner's circle... The secret was out.

The bay mare that had won the big race, was theirs!  



                                                       
(in the back) The veterinarian, the girl, the son, the boy
                                                   the daughter (front)