Saturday, June 30, 2012

Migraine Awareness Month Blogging Challenge #30: "Blogger's Pick"

AwarenessMonth2012BC2Today's prompt is:
Migraine Awareness Month Blogging Challenge #30: "Carpe Diem, You Betcha!" Tell us about a time when you truly seized the day.
My seize-the-day post is to take the place of one that I simply could not do - choose the best blog post for the month.  There are way too many, so I'll index them all in the next few weeks instead.  They all deserve credit for their amazing awesomeness!

So, seize the day... As I wax nostalgic, one special night comes immediately to mind...

I was working as an emergency dispatcher.  I usually awoke at about 12:15 to arrive at work at 1am.  Since I never slept well at night, I had happily taken the most awful shift in the entire Sheriff's office.

 The view outside my bedroom window

That night I awoke early to an eerie pale green glow coming from under the black trash bags that lined my window to keep out the sun during the day as I slept.  I pulled back the corner and was amazed at the site before me...

My window overlooks a pasture we often use for hay.  That year the hay had not yet been cut.

Something must have happened just right.  Maybe the planets aligned, or God just waved his hand over my little slice of heaven that night, because what I saw literally took my breath away...

The green glow that lit up my entire field and back yard were billions upon billions of fireflies.

I have never to this date nor afterward seen anything so amazing in all my life.

I quickly dressed, then went outdoors, convinced I was seeing things, but I wasn't.

Impulsively, I went back inside and got hubs and the kids so we could stand in awe together, sharing a sight I was convinced no one else on earth had ever had the opportunity to experience.  I thought about getting a camera, but with such limited time, I wanted to take in the sight and sadly, didn't get the camera to record the night sights...

We stood there about 10 minutes, the kids wiping sleep from their eyes and yawning "wow".  Then hubs wanted to go back inside and I reluctantly said goodbye to my family and headed off to town and my job.

For two nights the fireflies danced for me when I went to work, but never with such brilliance as that first night.

I've seen some amazing things in my life before, but never anything like that before, or since.  I am lucky I could share that one moment in time with my family, and lucky I followed my instinct and woke them up to see it with me..

Sure, it's a little thing, but in that moment standing on the porch looking at billions and billions of twinkling bugs lighting up the night sky so thick that seeing one individual light was impossible... I knew God was smiling at us.

It was a rough time in my life as I had been chronic and intractable for a little over a year, and I needed to know He was still there, watching out for me.  Now not only did I know He was there, but I had the opportunity to show Him to my children in the most amazing way...



Friday, June 29, 2012

Migraine Awareness Month Blogging Challenge #29: "More Often Than Not"

AwarenessMonth2012BC2Today's prompt is:
Migraine Awareness Month Blogging Challenge #29: "More Often Than Not" Today is Chronic Migraine Awareness Day.  People with chronic Migraine have Migraine more often than not.  Think of and share a random act of kindness that you could do for someone with chronic Migraine.
Today's blog post will be featured at Migraine.com. Come join me and tell me about your random acts of kindness ideas!

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!


Thursday, June 28, 2012

Migraine Awareness Month Blogging Challenge #28: "Lights, Camera, Action!"

AwarenessMonth2012BC2 Today's prompt is:
Migraine Awareness Month Blogging Challenge #28: "Lights, Camera, Action!" Pick a movie character you can identify with.  Talk a bit about them and why you can identify with them.
This was a terribly hard one for me, but when I decided to take on this challenge, I meant to take on the WHOLE challenge, no matter how hard the prompt.

There is a movie that I enjoy watching called "Changeling" It is based on the true story of Christine Collins -  a woman in LA in the late 1920's whose son was kidnapped while she was away at work.  About 95% of the dialogue in the movie is directly from court transcripts, and the movie itself shows many of the news headlines of the story.



In the movie, Angelina Jolie's character is faced with one of the worst things that can happen to a mother.  Her child is missing.  The police discover a boy in Illinois that claims to be her son, but when he arrives on the train, she realizes this is not her son.  She tells the police he is not her son, but she is not believed despite the fact he has miraculously shrunk 3 inches and doesn't remember things her son should know.  She begs the police to find her son.  Police don't want to look bad, so they get a physician to spin her claims then throw her into a psychiatric hospital without due cause or warrant, because they can.  While in the hospital she learns that no matter what she does, she will be reported as mentally ill. Despite the fact she knows she will suffer terribly, she stands up for herself and won't cave in.  

All she wants is her son back.

Every time she's knocked down, she gets back up again.

I don't want to ruin the movie in case you want to go out to your local DVD rental place and find it, suffice it to say that it is incredibly intriguing how much this woman goes through to save her son, yet she keeps getting back up and she won't give in.  Just when you think there can't be any more to the story, there is.  And it's real.  She told her little boy "Never start a fight, always finish it."  And she does.

Where my health issues are concerned, I keep getting knocked down, and some days I wonder how on earth I can get up one more time, but somehow I do.  I've endured criticism and stigma and been in so many no-win situations I can't begin to count them.  It's the hardest thing I've ever done sometimes, but I'm not going to let it win.  

Christine Collins' driving force was her love for her child.  She stopped at nothing in her attempt to find him.  

My driving force in learning all I can about Migraine and autoimmunity is also my kids, who inherited the genes for these problems from me, symptoms and all.

Never start a fight.  Always finish it.

~Ellen

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!


Wednesday, June 27, 2012

Migraine Awareness Month Blogging Challenge #27: "In My Head and Heart"

AwarenessMonth2012BC2 Today's prompt is:
Migraine Awareness Month Blogging Challenge #27: "In My Head and Heart" Who inspires you to keep trying and not give up, despite your Migraines?
My answer to this post is uncharacteristically short...

My children.



When they see me suffer and fight Migraine, they are taught that we can live with Migraine and not have our lives ruled by it.

When they see me lose a fight to Migraine, they learn that life isn't defined by those moments that knock us off our feet, but by how many times we get up afterward.

When they see me win a fight with Migraine, they see that it's possible to win and how important it is to not give up the fight.

When they see me smile, I hope that they realize that being happy is possible despite chronic health issues that sideline us.

I hope someday when I'm finally home in heaven, my kids will talk about my strength and the things my fight has taught them... how to live their lives well despite the toughest things life can throw in our direction.

I hope living my life this way shows them that there is always hope.

But most of all, I don't want anyone to have to settle for less than they need, and am determined to be one more voice... one more place to go for information... one more site that spreads the word that we can still live good lives even when we have chronic Migraine... that the stigma that reigns supreme today can someday be obliterated.

That's what I try to accomplish anyway...

~Ellen

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!

Tuesday, June 26, 2012

Migraine Awareness Month Blogging Challenge #26: "From the outside looking in"


AwarenessMonth2012BC2 Today's prompt is:
Migraine Awareness Month Blogging Challenge #26: "From the outside looking in"  Describe your perfect doctor to treat your Migraines.
Today's blog challenge prompt is featured at Putting Our Heads Together - "From The Outside Looking In" 

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!




Monday, June 25, 2012

Migraine Awareness Month Blogging Challenge #25: "Through My Children's Eyes"

AwarenessMonth2012BC2 Today's prompt is:
Migraine Awareness Month Blogging Challenge #25: "Through My Children's Eyes" Write a letter to yourself from your children.
Today's blog post is featured at Migraine.com 

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 24, 2012

Migraine Awareness Month Blogging Challenge #24: "Dear Genie"

AwarenessMonth2012BC2Today's prompt is:
Migraine Awareness Month Blogging Challenge #24: "Dear Genie" Put together a wish list for your life.
Dear Genie,

I know this is supposed to be a wish list for my life, but a list usually means there is more than one thing on it.  

All I want is my life back.  

I want to be able to care for and ride my horses.  I want to be the person who is always there for my family, not the one who is always letting them down.  I want to be able to go outside whenever I want without fear of an autoimmune flare or triggering a Migraine.  I want to swim in my swimming pool.  I want to be able to go fishing with my dad next year. I want to be strong and able-bodied again.  I want to work full time.  I want to be able to go to church every Sunday morning.  I want to play with friends.  I want to work in my glass studio again.  I want to finish the painting of my stallion.  I want to be able to work on the house instead of waiting for a contractor to have time to do it.  I want a garden, and to be able to put up fresh fruits and veggies like I used to.  I want to be able to mow the grass and trim the hedges.  I want to fix fence and muck stalls.  I want to sit with my face to the sun and not worry.  I want to exercise freely.  I want to eat food out of a box or bag.  I want to go to restaurants without asking of something special.  I want to enjoy a wine cooler again, or Bailey's over ice cream.  I want to be able to put ice in my soda.  I want to be able to leave my house without having to know where the nearest bathroom is.  I want to be spontaneous like we used to.  I want to live my days without constant pain.

 
I want all these things, but I want the experience of what I have overcome and lived through.  I want  to keep the friendships I have made and continue to help people.  I want to play a part in something fabulous that will change the way society views Migraine.  I want to talk to legislators and make them understand the message that Migraine is worth their time and worth funding. I want to say something that will end all the suicides due to Migraine and chronic pain issues. 

So Genie o' the lamp... can you help me?  Can you give me the instructions and the strength to do it myself? 

Until you make up your mind, I'm still gonna keep trying to live my best life.  The one I've been living all these years once it changed.  

I will still see the sights from my window and marvel at them.  I will still be amazed at the first nickers of a newborn foal to its dam.  I will still go outside in the dark and look at the stars and dream of fireflies.  And in my dreams, I will ride a white mare to the top of a hill, where I raise my hand in triumph.  Because Migraine fights with me, and it wins battles, but I am winning the war.

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!

Saturday, June 23, 2012

Migraine Awareness Month Blogging Challenge #23: "I drank the Kool-Aid"


AwarenessMonth2012BC2Today's prompt is:
Migraine Awareness Month Blogging Challenge #23: "I Drank the Kool-Aid" We all try things out of desperation, even when our common sense is telling us they're not going to do anything. Share your experience with this.
I guess I've been lucky.  I haven't ever really tried anything bogus.... yet.  I have been tempted, but I make it a point to always inform myself of things before trying them.

I did once try something I shouldn't have because I didn't do the smart thing and look up every tiny side effect.  What was it?  Topamax.

This was several years ago, when Topamax was still fairly new.  Kidney stones were considered a rare side effect.

My neurologist prescribed it for me.  I asked about side effects, but kidney problems were never mentioned.  I looked at the paper that came with my first dose, but it was listed as rare and when I talked to my doctor about it, he didn't feel that there was any risk for me since I hadn't had a stone get stuck in some time.  He really felt this would solve my problems.

A few months later, I was at a meeting, standing and talking to a friend, when I felt the familiar stabbing sensation in my side.  I actually was able to hide it.  Not a person there suspected a thing.  I went to the bathroom.  It didn't change, so I drove home - about 1 hr.

When I got home I was sweating and doubled over.  I knew it was a stone, but also knew from experience what they would do for me in the hospital.  First they try to flush it with fluids.  That I could do at home.

I felt the stone on Tuesday, and tried until Friday to pass it on my own.  By then I was exhausted and dehydrated because I had vomited much of what I was drinking back up.

I was given a choice, I could have surgery the next day and have it removed, or wait until the following week to have lithotripsy.  The pain of a kidney stone is 10, and by that time I also had an untreated Migraine to deal with as well.  They moved me to a private room because my roommate (and all her visitors) was disturbed to hear me moaning and puking all day long.

The problem was a staghorn kidney stone.  And yes, it is as bad as it sounds.  Parts had been breaking off and I had been passing them, until one broke off that was too large.

I had surgery, but there was some damage they didn't suspect, so I needed a stent and was catheterized with a foley catheter for quite a while as my kidney and ureters healed.  All this happened as my parents were making a trip from Oregon out to visit us.  It also happened when I had a golden retriever that was ready to whelp (have puppies).  We had a working farm at the time, and our daughter who was barely a teenager ended up running everything while I was hospitalized. 

Daughter held down the fort, but her grades slipped badly.  She was an emotional wreck and teachers did not understand.  I barely saw my folks.  They were upset that I wasn't still in the hospital.  And the dog?  She had 16 pups while daughter was at school.  She came home to find puppies everywhere.  Unfortunately, some of them didn't make it despite her best efforts.

The fun didn't stop there.  My catheter kept clogging, in the hospital and once I got out, meaning several emergency visits to have it replaced.  This was agony - the worst pain I've ever felt bar none, and I'm a tough girl who's been through a lot.  One night it was so bad, Hubs called the urologist at home at about 11pm.  Poor brave Hubs got step by step instructions over the phone how to remove the cath, which he did bedside in our bedroom.   Then I had to make the long trip back to the ER for another one.  I felt every tiny stone on the road.  

(Can I just say, right here, that being able to pee all by yourself is highly underrated!)

I should have followed my gut instinct when I saw the *rare* mention of stones.  I am a stone former.  A gravel pit of the things.  I've had kidney trouble due to my autoimmune diseases too.  I trusted my doctor.  But doctors are human too.  They make mistakes.  I guess I had forgotten that part.

After surgery when I was still hospitalized, Hubs was getting me a drink in the hallway when he saw my neurologist getting on the elevator.  He told him what happened.  The neuro came in and asked how I was doing.  He said he was sorry I had this happen to me. 

I never saw that neuro again.  Suddenly phone calls weren't going through and I couldn't get an appointment.  Coincidence?  I really don't know.  I gave up and tried to find another doctor.

Unfortunately, my kidney has never been right after that.  I recuperated over about 4 months.  It was probably 6 before I was functioning very well again.  There is still constant pain.  I still form stones, but am much more careful now when someone tries to give me meds that might cause a problem.

Topiramate can be a godsend to some Migraineurs.  I don't want folks to read this and think this will be their experience should they decide to try it.   Although we now know that stones are NOT rare, good management (the kind I didn't know I needed) can help prevent the kind of experience I had.    

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!

Friday, June 22, 2012

Migraine Awareness Month Blogging Challenge #22: "The Game Changer"

AwarenessMonth2012BC2Today's prompt is:
Migraine Awareness Month Blogging Challenge #22: "The Game Changer" Tell us about a time your plans changed due either to an unexpected Migraine or an unexpected Migraine free experience.
Today I'm going to blog with two posts.  One about a ruined day which you can find at Migraine.com, and this post about a remarkable, wonderful week...

Two Weddings in a Week

Both my kids were engaged and to be married a week apart.  Crazy - right?  It was actually planned that way so out of state friends and family could plan vacation time and make it for both weddings.  

I knew it could be a real disaster.  You see, not only am I a Migraineur, but so are both my kids and their fiancee's.

We knew we needed to stack the deck in our favor.  In our house there is a saying:  "Plan for the worst.  Hope for the best."  So, we did.
  • I bought new glasses a month before the ceremonies, minimizing light issues.
  • We bought dozens of umbrellas to escape the sun  
  • Had cold drinks planned for everyone to escape the heat and stay hydrated
  • The first wedding was planned for the evening in a wooded park - completely under the canopy of huge trees.  Reception was at night and lit almost entirely by about 1000 unscented candles
  • The second wedding was planned for an evening indoors in air conditioning, where the only light was either (unscented) candlelight or twinkling white Christmas lights.  
  • I had food planned for the entire week - all trigger free and easy to prep ahead of time.  
  • We had lots of help scheduled, in case I was out of commission.
  • The almanac said we were having the ceremony in about the only rain free time of the summer.
The night before my daughter's wedding there was a terrible thunderstorm. She was Migraining all night long, and I had one kick up about 2am.  She had forgotten her meds, so in the middle of the night I drove 2 1/2 hrs to pick her up at her house, give her the Frova, then get her back home in her own bed away from the wedding chaos, despite my own Migrainey brain. 

The storm stopped just a few hours before her wedding time, as did my Migraine, so we went ahead and had it outdoors with a one hour rain delay.  (Hey, if a baseball game can do it, why can't we?!)  Yes, there was a lot of mud...


But there was little sun and it was cool (in the 70's), which meant two of my biggest triggers were suddenly GONE!  This meant - no hiding behind sunglasses or umbrellas!!!!!



We had plenty of wedding day drama, including a parade of unexpected hot air balloons above us, missing decorations and having to ask guests for help when our scheduled help didn't show, but in the end, it was beautiful and things worked out okay.  I felt so blessed to have that one wonderful day to celebrate the most important day of her life with her, without a Migraine.  









So, what about wedding #2?

The following week was chaos, but we managed wonderfully.  I think most of us had Migraines leading up to the rehearsal dinner and decorating party, and of course the requisite drama one has at these things.  However, when it came to the wedding day, everything went off beautifully.  We got to help our new daughter in law have the wedding of her dreams, and nobody was waylaid by a Migraine attack - not even one person!  







I thank God every day for giving me those two precious days without a Migraine to ruin it.  Don't get me wrong... I still got a prescription of steroids just in case, and was on my indomethacin and about everything else I could think of to keep things under control.  But that's okay.  I still consider it two of my favorite days ever.  

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!

Thursday, June 21, 2012

Migraine Awareness Month Blogging Challenge #21: "Shaking in my Boots."

AwarenessMonth2012BC2 Today's prompt is:
Migraine Awareness Month Blogging Challenge #21: "Shaking in my Boots." What's your biggest Migraine related fear?  How do you cope with it?
Another ER Visit - Another Medical Mistake

Several years ago, I went into the hospital for Status Migrainosus.  I had tried everything I could at home and was both exhausted and dehydrated.  My doctor told me they were using a *new* treatment for Migraines.  He called it "The Mayo Protocol".   

The protocol utilized several medicines.  One was oral, the rest were IV.  

I had a serious reaction to one of the IV medicines.  I fell over and was unable to breathe.  My brain swelled and I am told that I postured.  (Posturing means your body draws itself up into a fetal-like position).

Unfortunately, the drugs used on me that day are very commonly used Migraine medications, especially in a hospital setting.  

Unfortunately, the nurse who gave them to me didn't pay very good attention to what she was giving me when.  She swore she gave me Benadryl, but the reaction was actually more like a tardive reaction to one of the other meds I was supposed to receive - thorazine.  

The fact is, we will never know for sure what happened - the drugs all looked the same in the syringes.  Suffice it to say, I am a very lucky girl who now has to tell everyone that I am allergic to Benadryl.  We now know that I have tardive reactions as well, so there is also a long list of those medicines I also react to. 

As a patient who also suffers from autoimmune diseases and a related circulatory condition called Raynaud's, there are a whole list of meds I can't take, or I risk amputation.  Triptans and ergotamines are big on that list.  This means doctors want me to take the medicines I was given at the hospital that caused the reaction. 

This is a huge red flag for emergency physicians.  

As a result, I have had multiple physicians try to give me these medicines regardless of this reaction.  When I tell them of my reaction, I am flagged as a drug seeker.  Despite my history, on more than one occasion I have had doctors try to trick me into agreeing to take these meds by telling me their generic name when asked.  As a result, I have been refused all Migraine treatment on more than one occasion.    

How do I deal with this fear?

I got educated.  This incident was one of the things that triggered me into becoming a proactive and educated patient.  An educated patient knows when they are being played for a fool, because an educated patient knows the name brand and generic names of Migraine related medicines.  They also ask a lot of questions.

I got smart, which is not the same as educated.  I now always try to have someone go with me to a doctor's appointment or a hospital trip.  When you have someone with you, you are less likely to to be tricked or disrespected.  They are there to stand up for you when you cannot stand up for yourself.    

I have a printed list of medicines I cannot take.  That list goes with me and is in my checkbook and my glove box in the car in case someone else needs to know about it.    

I may not be able to stop my Migraine Disease, but I can sure stack the deck against anything else bad happening to me as I manage it.

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!





Wednesday, June 20, 2012

Migraine Awareness Month #20: "Run, Forrest, Run!"


AwarenessMonth2012BC2Today's prompt is:
Migraine Awareness Month Blogging Challenge #20: "Run, Forrest, Run!" Describe your perfect doctor to treat your Migraines.
10 Tips for Changing Doctors

Changing physicians is an enormous task when you are chronically ill, especially if your illness is chronic Migraine.  

I’ve found myself needing to move on to other doctors for my illnesses, and it is never a pleasant task.  The reasons I’ve found this necessary are varied, but usually have something to do with the way I was treated at an office visit or ineffective management plans.  

So, let’s see if I can come up with a few tips to share:

1.        Don’t get discouraged.  Not every doctor out there is a rotten apple.  There really are some fabulous physicians who truly want to help Migraineurs.  The trick is locating a good one and getting into the schedule.  Do NOT blame yourself.  Not every doctor is for every patient.  You just need to move on until you can find someone that will click with YOU.

2.       See a headache specialist.  Most patients I talk to that are unsatisfied with their physicians are unhappy because they are getting substandard treatment, or are not being understood by their current doctors.  When you see a headache specialist, you are seeing someone who deals with the toughest headache and Migraine cases there are… on a daily basis.  They really are your best, first choice.  There is a glitch though.  Anyone can call themselves a headache specialist.  Even those listed on some pharma websites as *headache specialists* really aren’t certified as such.  They just went through injection training and have signed up saying they have an interest in treating headache patients.  Here is a list of board certified headache specialists.
 
3.       Get a physician referral if possible.  When a physician calls a headache specialist and refers a patient, it is not uncommon that the patient will find themselves with an appointment much sooner than if they self refer.  If you are leaving a doctor, just ask them to refer you to the next one you want to try.  This is especially easy if you are not seeing a headache specialist, but want to switch to one.  Don’t be embarrassed to ask… this is part of their job and why you pay them so much money. 

 
4.       Get and keep paper copies of your records from your all your current doctors.  Do this well before your scheduled appointment.  Keep a copy for yourself and put it in a binder so that the most current labs etc are at the front.  As you continue treatment with any doctor, ask for those lab results etc and add them to the front.  Keep this handy for all your doctor’s appointments and you’ll be amazed at how much time and money is saved as a result. 

5.       Start a headache journal.  Even if you’ve done one before, your new doctor will want you to do one for them, so get started now and you’ll save yourself and the doctor a lot of time.  Migraine.com has one that your doctor can access easily from his office whenever he needs to see how you’re doing.  You can find it here: Migraine Meter

6.        Create a medical history sheet.  List all your current meds, current and past medical conditions and the dates you had them.  Also list any surgical procedures you’ve ever had.  Keep this handy and updated and it will expedite the bookkeeping and appointment.

7.       If you have tried preventives before, create a list of them.  If you know the date you used them that too, is helpful.  Put the dosage you used, and any side effects as well as the reason for stopping the medicine.

8.       Create a page that illustrates what you do when you get a Migraine attack.  Describe how a typical attack starts and feels like.  What do you take and when?  What happens during the worst case scenario?

9.       Create a page of questions for your new doctor.  Let him know at your first appointment that you have this list and let him/her see it right from the get-go.  Do NOT wait until the end of the visit to suddenly mention something new to your doctor.  They really hate that. 

10.   If you can, tactfully explain why you are leaving to the doctor before you go.  This is not for your benefit, it is to help the next patient down the road that has the same or similar experience.  Yes, the doctor may be unhappy, but they may also change how they treat their patients.  If you feel funny about doing this, take someone else with you and you’ll be much less likely to be treated unfairly or with disrespect.

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!

Monday, June 18, 2012

Migraine Awareness Month Blogging Challenge #18: "The Price Is Right"

AwarenessMonth2012BC2 Today's prompt is:
Migraine Awareness Month Blogging Challenge #18: "The Price Is Right" What one thing would you do for the Migraine community if money were no issue?
If money were no object, my choice is abundantly clear...

We need research to answer some basic questions about Migraine - Who, What, Where Why, When and How.

Why this kind of research?



This is the research necessary for us to develop new UNIQUE drugs, treatments and therapies to help us.  

If you've read my blog at all this past month, you'll already know that these are the questions big Pharma can't answer for us.  Their jobs are to take the information we already have about how Migraine happens in our bodies and design treatments based on that knowledge... which by the way, is very minimal at present. 

It takes public funding for this kind of research. 

I would also add that since money is no issue, Teri Robert's idea on Migraine.com to  create an endowment fund for the purpose of this research would assure that funding would continue to be available not only for us, but for our children, and their children, and their children - a virtual bottomless pit of research opportunities!

So, now it's time for me to go buy a couple of lottery tickets I guess LOL.

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!

Friday, June 15, 2012

Migraine Awareness Month Blog Prompt #15 - Migraine Frustration

AwarenessMonth2012BC2Today's prompt is:
Migraine Awareness Month Blogging Challenge #15: Free Blog
Blog on a Migraine related topic of your choice!
Today, let's talk frustration and getting constructive with it...

It's easy to get frustrated when you suffer Migraine.  It's especially easy to get frustrated when you have chronic Migraine or daily headache, because it seems there are no breaks from the experience and the pain.

Pain is physically exhausting, so we carry this frustration inside of us.  We try to hide it, usually not too well.  Part of us wants to yell and scream and curse at the world for not understanding, and the other part wants to be stoic and not say a word that might burden those around us.  

I'm not a yeller or a screamer.  I'm also not especially great at being stoic most of the time.  I'm just a person, like you are.  There are days I just feel like I need to say something.  Not to anyone in particular.  I just have something to say.  

I have two ways of making myself feel better.  One thing I do is write letters.  

Letters are a great way to get something off your chest.  You can write whatever you want, and say things however you feel the need.  Forgive a friend. Encourage a family member. Scream at the world.  By putting it down in a form that you can see, it takes a lot of the pressure away from the valve.  I have never sent any of my letters.  They're in my computer and every once in a while, when I get frustrated I pull one up to read it, just because it makes me feel better. 

The other thing I find helpful is writing a poem.  

Now don't get me wrong, in no way shape or form do I consider myself a poet.  However, the creative process of writing something you feel and giving it color and life by how you describe it, relaxes me.  Sometimes my poems are shared (not usually under my own name - to save me potential embarrassment because they're really not that good).  Sometimes I just write them for me.  

The American Pain Foundation used to have a poetry contest, and Teri Robert has a poetry contest every year on Putting Our Heads Together that encourages patients to open themselves up and write about how they're feeling.  This is a great way to share what you might have written throughout the year.  They can be entered anonymously or with a username, so if you're embarrassed like I am, it makes it easier to submit them.  

This year's contest winners were just announced, and with this post I'd like to encourage others to begin thinking about next year's contest.  The next time you feel something and want to get it off your chest, consider writing for the contest next year instead of taking frustrations out on friends, family or community members.  Create something constructive out of a destructive disease.  Make something ugly into something beautiful.  

With words, we have that power...

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!

Thursday, June 14, 2012

Migraine Awareness Month Post #14: "Live Long, And Prosper"

AwarenessMonth2012BC2
Today's prompt is:
Migraine Awareness Month Blogging Challenge #14: "Live Long, And Prosper."  Come up with a short, simple phrase or sentence that could be used when saying "Hello" or "Goodbye" that expresses your wishes for fellow Migraineurs.
This is the shortest blog post ever, but it comes straight from the heart...

May the triptans work their magic, 
And the preventives keep you sane,
And the rescues be unneeded 
And the Migraines cause no pain.

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!

Wednesday, June 13, 2012

Migraine Awareness Month Post #13: "You Are Beautiful"

AwarenessMonth2012BC2
Today's prompt is:
Migraine Awareness Month Blogging Challenge #13: "You Are Beautiful."  Write yourself a love letter.  Tell yourself how wonderful you are. Remind yourself of the things you have accomplished despite Migraines. There are times we need to be reminded of the good things about ourselves which others see that we may have missed.
Today's blog post is featured on Migraine.com.  This is a prompt that was used on WEGO Health that we thought would be such a good exercise for Migraineurs.  It's so easy to remember all the bad things about life with an illness, that it's often so difficult to remember what the rest of the world sees.  I would encourage all other bloggers to do this exercise... you'll be glad you did

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!

Tuesday, June 12, 2012

50 Tweets for Migraine Awareness Month

One of the easiest ways to create awareness for Migraine Awareness Month is to schedule tweets using hashtags on Twitter.

For those who have never done this, I have created this list of 50 tweets for Migraine awareness which are designed to be copy/pasted and used wherever you like - twitter, facebook and any other social media platform you like to use.  Pick any that you would like to use, or all of them!  If you're new to twitter, detailed instructions for scheduling are below. 

Included are special hash tags that will help others who are looking for information on these subjects.  I have also included mentions (@) for some of the tweets that will land them in the inboxes of folks who hold Migraine research in the palms of their hands, as well as organizations that are particularly interested in the subject.

What is 'scheduling tweets'?

Once you have your twitter account live, you can use any one of many special tools online that help you maintain multiple social media accounts.  This usually includes scheduling.  

Scheduling means that you go in ahead of time, create your tweet and assign it a time to go live.  When that day/time arrives, the tool (like Hootsuite or Seesmic) sends your tweet out automatically without you having to lift a finger.  Easy peasy!  

Because I use Hootsuite, I'll include some instructions below: 

  1. To use Hootsuite, first create an account.  
  2. Add your twitter account to your hootsuite dashboard and any of the streams you choose.  I have added and frequently use Home; Mentions; Direct Message; Pending Tweets and Sent Tweets.  Once you've done that, you're ready to go.  
  3. Copy/paste the first tweet you want to use into the tweet box in the upper L hand corner of your dashboard.   
  4. Click the calendar button (it looks like a small square calendar) just below the tweet box.  When you run your mouse over it, it will say Scheduling.
  5. Click the date you want your tweet to go live.
  6. Enter the time you want your tweet to go live.
  7. Hit the Schedule button on the lower R hand of the box.
  8. Check your Pending Tweets tab to be sure your tweet is there, ready to go.
That's it!  You're done  :)

It took me about 30 minutes to schedule all my tweets for the entire month.  Now I can concentrate on other Migraine awareness activities.  

I hope you'll join me!  

Don't forget to use the hash tags #NMAM (National Migraine Awareness Month) and #NMAMTC (National Migraine Awareness Month Tweet Challenge)

Migraine Awareness Month Post #12: "Let's Do The Monster Mash"

AwarenessMonth2012BC2
Today's prompt is:

Migraine Awareness Month Post #12: "Let's Do The Monster Mash."  Choose a movie monster that reminds you of Migraines and tell us why.
Today's creepy beasty blog post is featured on the Migraine blog Putting Our Heads Together which can be found here.

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!

Monday, June 11, 2012

Migraine Awareness Month #11: "Say What?"

AwarenessMonth2012BC2
Today's prompt is:
Migraine Awareness Month Blogging Challenge #11: "Say What?"  What's the most ridiculous thing said to you about Migraines?  Who said it and under what circumstances?
"Well, at least it's not cancer."  "Well, at least you won't die from it."

I'm not going to name the people who have said this to me, but I know right now there are Migraineurs (especially chronics) who are reading this and shaking their heads in knowing disbelief.  What I write after this will be an eye-opener to almost everyone however...

In 2011 I participated in Headache On The Hill (HOH) with a breast cancer survivor.  While she was not an advocate herself and was not super active online, she did have something very important to tell those legislators we spoke to that day.

"Cancer was a breeze compared to living with Migraine."  


Here's what her explanation was...

Everybody understands cancer.  There are tests for it.  You can see it on an x-ray.  Diagnosis is fairly straightforward as is its treatment.  There are commercials for it, free testing for it, and support groups for it.

Because everyone talks about cancer, everyone understands what your body goes through during cancer treatment.  They support you.  They rally around you.  They bring you casseroles to eat for dinner, clean your house, run errands for you, drive you to church and doctor appointments.  They help you fight.

When you have cancer, everyone rallies around your family.  They are supportive asking what they can do to help, and offering shoulders of understanding for tears when they are overflowing.

Medications are constantly being sought for cancer.  Research is ongoing and enthusiastically paid for by the public and by society.

Once you say the words "I have cancer" nobody doubts you or your experience.  The only stigma re: cancer is when patients don't appreciate the pity party others often want to throw them.

Cancer has an end.  When this cancer patient went through treatment, she knew about how long it was going to take.  She had a light at the end of the tunnel and something to look forward to and strive for.

There was an end.  There are *cures*.

Migraine is not like that.  



Nobody really understands the how, what or why of Migraine.  Diagnosis is one of exclusion - there are no tests FOR Migraine because so far we don't understand the how, what or why and there are precious few public funds going to learn these things.  Pharma doesn't look at the how, what or why of a disease - that isn't their expertise.  That is left to researchers who are publicly funded.  If they can't get the funding to learn more, there will not be any new treatments coming our way.

Unless you suffer Migraine, you cannot understand the experience of an attack, nor living for days, weeks, months or years without respite from the pain, nausea and other debilitating symptoms.  If you are chronic, reality is that it can mean there is no end.  It goes on, and on, and on, and on, and on, and on... without end.

Migraine is an invisible disease which comes complete with its own long set-in-stone stigmas that date back centuries.

We are seen as drug seekers who are weak in constitution and willpower.  We are stressed out people that just haven't learned how to relax. We are complainers who can't take a little pain.  We are lazy and just want to get out of school, work and other activities.  We are fakers, or we have psychologic or psychiatric problems and just won't listen.  We are just a little depressed and need to cheer up.  The list goes on ad infinitum.      

When you are a Migraineur, especially if you are chronic, there are rarely people who are busy calling you because they want to help.  There are no casseroles, no trips to the doctor or church, no clean house.  There is no team rallying around you cheering you on as you fight your battles.  No hugs or letters of encouragement. 

There is no Relay for Migraine.  There are no 10K runs.  No bake sales.  No products with purple ribbons on them being sold at Wal-Mart.

What we do have is people who come out of the woodwork suggesting this or that treatment they read about or heard about somewhere that might have worked for someone they knew.  People who give us books on reducing stress, or doctors or yoga instructors telling us that if we would pinch our toes or just relax and meditate, all our health problems would go away.  We have teachers or bosses who chastise us for missing school or work, and co-workers who cause problems for us by turning the heat up too high, or wearing perfume or telling us to toughen up and pull our weight.  We have a government that, in the interest of being green takes away the only safe lighting for us, essentially mandating harmful fluorescent lighting giving us little choice but to suffer in silence wherever we go, including our own homes.

When a patient admits they have Migraine, there is sometimes a reply of "I'm sorry", but unless the party speaking has heard of a miracle cure they want to volunteer, it usually ends there.  The conversation changes, or simply stops.

When our family needs to talk out their frustrations, they are met with little to no support.  No understanding.  No help.  They are expected to *manage* their family and their situation in a way that makes it easy for everyone else to tolerate them. 

Migraine can in fact kill you.  Patients can suffer Migrainous stroke - it is rare, but I've spoken to many who have suffered this fate and been lucky enough to survive.  Plenty of others have not been that lucky. Being a Migraineur also significantly raises the chances of cardiovascular disease, and yes, death. 

Chronic Migraine patients too often find themselves desperate for relief.  They may become so desperate that they find they can no longer live in such pain and disability and instead choose to find their own way out.  It isn't that these patients want to die, it is a fact that they simply can't live with the pain any longer and see no other option.  The risk for unemployment rises, and with that, homelessness and depression.  Suicide risk is significantly increased in patients and yet this is rarely recognized.

Migraineur Marie Little - wife of comedian Rich Little, tragically committed suicide

Those taking multiple medicines for their Migraines are at increased risk for adverse events and medical mistakes.

Migraine does in fact take the lives of patients too often.  Rarely will a death certificate read "Migraine".  Instead, it may read: Accidental Overdose.  Medication Reaction.  Organ Failure. Heart Attack. Etc.

So my question is, what do you say to people who have unhelpful things to tell you about your Migraine disease?

Sunday, June 10, 2012

Migraine Awareness Month Post #10: "Name The Spokesperson"


AwarenessMonth2012BC2
Today's prompt is:
Migraine Awareness Month Post #10: "Name The Spokesperson." Choose any celebrity to represent Migraine (whether they have it or not).  Who would it be and why?
I have thought long and hard on this subject for many years.  There are a lot of celebs that would be excellent spokespersons, and all for differing reasons.

Whooopi Goldberg has been one of my favs forever. I love that she speaks her mind and is not shy when it comes to revealing details about herself.  People listen to her and if she told her audience that Migraine really bites and why, her audience would believe her.  To have someone who unabashedly tells it like it is, or can be, would be priceless.

Kristin Chenowith is a doll.  She makes you feel all kinds of things when you see her.  She is honest and sweet and funny, and everyone loves her.  She could tell about Migraine from a personal standpoint and make people feel compassion, while telling the sometimes ugly details in ways that make you laugh and think at the same time.  This would be priceless.

Chloe' Kardashian is popular and willing to let the world see what real life is like, and people are interested in her life.  She has an audience that is huge, and young.  She could speak to those who are young enough to not understand what Migraine can do to your life when it's bad, yet show by example that Migraine doesn't have to be the end of your productive life.  That would be priceless.

A Congressman/woman would be awesome.  They are leaders and could eloquently dis-spell some of the stigma we endure every day.  They are powerful, and we need someone powerful to make society sit up and take notice.  They can make a difference politically because they are listened to and respected in this arena. When you consider how much we need a congressional hearing and better attention to the burden of Migraine on society, not to mention our forgotten veterans who suffer, this would be priceless.

What about a veteran?  Someone who has defended and protected our country and sacrificed so much for our freedoms.  A medal winner perhaps.  Would the public sit up and take notice if one were seen to be comparing the fight of serious or chronic Migraine attacks compared to the war they have endured before they were injured?  This would be priceless.

A super-buff football player would be perfect.  Migraineurs are often seen as weak and looking for attention instead of the fighters we are.  I can't help but wonder how wonderful it could be if a hulking, strong, fierce competitor like this stood up and told what Migraine is like, giving his audience educational facts so much stigma would vanish.  It's one thing to be powerful in body, but to be powerful in changing lives like this would be priceless.

Right now, we have no one famous to tell the public about Migraine.  We have only ourselves. 

We must be sweet and funny and compassionate, open to sharing our lives, willing to talk to our legislators for the change we need, ready to fight for research funding and better treatments.  This requires being tough on the outside and powerful and determined on the inside... without an ounce of reserve or shyness.  All these things a celebrity could give us on a large scale, we can give ourselves on a small scale.

Add enough little voices, and they can equal the voice of a famous celebrity.

And, we can start today.

Saturday, June 9, 2012

Migraine Awareness Month #9: "Daydream Believer"

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 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?