Comfort, Peace, Coping

This is the theme for today's Migraine and Headache 
Awareness Photo of the day.

In addition, I am including the Team Migraine "M" in 
each of my photos. Make the Team Migraine "M" 
with your hands in the photo and use that to help 
generate conversation too! 

Today's prompt is Comfort, Peace, Coping

My beautiful mare Sammy gives me comfort and 
peace, and my hubs helps me cope from day to 
day.  He too is a great comfort to me.I want 
people who see them to wonder what's with the 
"M".  Maybe ask a few questions, generate a few 
conversations.  

If you're participating in the Photo of the Day, I 
encourage you to do the same.

MIGRAINE & HEADACHE

AWARENESS MONTH 2013

PHOTO CHALLENGE

Take and share a photo each day of 2013 
Migraine & Headache Awareness Month 
(MHAM) this Juneusing these prompts for
 inspiration. Use your creativity in interpreting the

prompts. There is no right or wrong way to see 
them.

Share your photos on Instagram, Facebook, 
Twitter, Tumblr, Google+, yourblog, etc. Use 
the hashtags #MHAM #MHAM2013 and/or 
#MHAMPC so others can find & identify your photos.

Hello American Headache and Migraine Association!

Those of you who follow me on Migraine.com are aware that a good portion of my time these last several months has been spent working on a groundbreaking new Migraine and headache patient organization we have named the American Headache and Migraine Association (AHMA).

AHMA is an arm of ACHE - the American Headache Society's committee on headache education.  As such it falls under their 501c(3) status, and all donations to AHMA are tax deductible.

Coming soon is an awareness store chock full of amazing things that will help bring awareness to these disorders, but also help make you a part of this Team Migraine movement.100% of the proceeds from the store go to the organization.

A member forum is a great place to connect with other members and share your experiences while you learn from others.  

Many other opportunities are in the works as well.  A mentoring program, and a lot of really neat ideas.

The best part of this new organization is that we are currently working on our very first patient conference to be held on November 24, 2013 in Scottsdale, Arizona.  

We have some amazing speakers already lined up and ready to talk to you, your families and care partners.  Wouldn't you love to join us?!

This is an amazing opportunity I hope many of you will be able to avail yourself.  Many of us advocates will also be there, and I hope to get the chance to meet you!

For more details on joining the AHMA please see the AHMA blog.

Live your best life,
Ellen Schnakenberg
~patient educator and advocate.

Goodbye 2012!

2012 brought with it a lot of heartache and stress.  I'm not sorry to see it go.  However, I'm not sure that I'm ready for 2013 either, with it's uncharted territories and scary new things.

In a week I'll be trying a new specialist and new treatments.  This is always a scary thing for me, as my history with doctors has been dubious at best.  Many of my readers have had similar experiences and will understand my trepidation.

Goodbye 2012.  I have made peace with your passing... not that I had any choice.

Thank you for your lessons.  Thank you for the new friends you brought my way.  Thank you for helping me become stronger.  Braver.  Wiser.  Without you I would be much the poorer.

Hello 2013.

Please don't let me down.  With your birth I feel hope, but I am also afraid.

Please grant me friendships that strengthen and new friends that enrich me.  Please keep my losses this year to a minimum, as my soul loses pieces each time I lose someone or something dear to me.  Please make me braver tomorrow than today, and smarter so I can continue to help other patients.  Speaking of patience, lol... give me more please, so the stress seems less overwhelming.

Happy Birthday 2013!  

Migraine and 30 Days of Thanksgiving

Chronic Migraine makes it difficult to concentrate on the good things in life, yet at the same time makes it even easier to appreciate them.  I really have been very blessed in my life - I've had dreams I made come true, and I have a loving family and good friends to share those dreams with. 

When we're hurting, it seems the pain is about all we can think of, doesn't it?  Nothing else seems to get through unless we make a concerted effort to go beyond our pain.

I'm reminded daily of the things that my chronic Migraine and other illnesses have taken from me.  Stolen from me.  It's easy to become bitter.  Resentful.  Thinking positively is SO important when I'm hurting.

Then on those rare days when there is a break in the pain, something little happens and it feels like I've won a million bucks! You just can't squoosh me on those days.  Sometimes I know I can be horribly annoying because I just can't seem to stop smiling.  I am and have always been a glass half full kind of girl!

This fall has been especially difficult for some reason.  My pain levels have been higher.  My autoimmune flares have increased in frequency and severity.  Migraines have gotten worse, and I have added different headache problems on top of my normal Migraine stuff.  I knew I needed to pay special attention to those things that keep me going, because I don't want to wallow in negativity that can be so infectious.  So, I decided to participate in a challenge - 30 Days of Thanksgiving.

The idea is to write somewhere each day - Facebook, Twitter, this blog or any of the others in which I participate - and mention something I'm especially thankful for that day.

I'll admit it... the last two weeks have been difficult for me, so this task isn't always as easy as it should be.  When I'm feeling good, all I can do is think about the wonderful things in my life.  When I'm feeling lousy, well, I'm more likely to feel like grumbling or venting than counting my blessings.

30 Days of Thanksgiving has been good for me though.  It pushes me to remember how blessed I really am.  It challenges me to look beyond what I am experiencing in the moment and remember what it is like to feel good.  The big picture is more important than the small stuff.  I wake up in the morning wondering what is going to happen that day that I can write about the next day.  I find myself looking forward to the day and its possibilities, even when the pain is overwhelming me.

In a season where it's so easy to be reminded of all the things we can't do, how do you keep yourself on track and remember to be thankful for the blessings you have?   

This post is my response to the November 2012 Headache and Migraine Disease Blog Carnival.   

A blog carnival is a collection of links to a variety of blogs on a central topic. The Headache & Migraine Disease Blog Carnival has been created to provide both headache patients and people who blog about headaches with unique opportunities to share ideas on topics of particular interest and importance to us.  This month's challenge was:  Giving Thanks: What are you thankful for in your life despite living with a headache disorder or migraine disease? How do you stay focused on it when life gets hard? 

Live your best life,
Ellen Schnakenberg
~patient educator and advocate

 

Migraine Myths: Opiates, Narcotics and Glutamate

Migraine factoid: 

One more reason opiates/narcotics can be dangerous for Migraineurs: they leave residual glutamate in the neuronal synapses, which may render other therapies ineffective.  

Glutamate is the working end of MSG and is an excitatory neurotransmitter which can be a potent Migraine trigger.  It has been placed at the top of a cascade that too often results in Migraine attacks.  Examples of these drugs include Tylenol 3, morphine, hydrocodone, oxycodone, Oxycontin, Dilaudid etc.

Here is a Migraine.com post I wrote some time ago re: glutamate and how it works in our brains, as well as a list of other names this nasty little neurotransmitter can hide under in our food, cosmetics and other products.  We need a balanced amount of glutamate to live, but keeping that balance is tricky indeed.

Anything that potentially renders our other therapies ineffective should be avoided if at all possible.  

It's sad, but many Migraineurs, especially those that are chronic, tend to think that their doctors refuse to prescribe opiates and narcotics for their Migraine pain because they don't believe how bad the pain is.  Please understand - this is untrue and those who perpetuate this lie are not helping patients get better!!  

   Silver Creek Falls, Oregon Photo copyright 2011 Ellen Schnakenberg

The truth is, having Migraine is bad enough, but can you imagine if it got worse?  That is what opiates/narcotics can do for us.  Yes, it helps the pain temporarily, but the damage it can cause can be long-lasting.  If it help an episodic Migraineur transform into a chronic situation, so much the worse. 

As an advocate, I do believe there are times when treatment with opiates and narcotics are appropriate.  This should be a last option however, not a first or second line drug to help with attacks.

If you suffer episodic Migraine or chronic Migraine, please talk to your doctor if you are still using opiates or narcotics.  These medicines are designed to help us feel better, but they do nothing to get to the root of the problem which is the Migraine process itself.  It's true, we want relief from the pain, but that's only the tip of the iceberg.  We don't need pain relief, we need something to abort the process or prevent it in the first place.  

Live your best life,
Ellen Schnakenberg
~patient educator and advocate

Migraine and The Importance of Friendship

Chronic Migraine can suck the life and breath right out of a person.  Living with it is exhausting... that's the only way I can describe it.

What makes living with chronic Migraine, lupus, Sjogren's syndrome, dystonia and all these other comorbidities easier?  People who love you.

Today I am so thankful for the friends I have, those who have stuck by me through the best times when I tend to be overly enthusiastic and polly-anna cheerful... and the worst times, when I tend to close myself off in favor of disappearing into a pit of selfishness and despair.  The ones who listen when I blabber on and on, and are there to lift me up when I need it.  These are the same people who kick me in the tushy when I need it too.  

Good friends are like that - we can count on them, and they can count on us.  

         Photo copyright 2011 Ellen Schnakenberg - Tyki the Havanese

I can only hope I have been a good friend to those I feel close to.  To you.  I do try very hard. My heart goes with you wherever you are. 

So today, I am telling my friends "I LOVE YOU!"  If I could shout it from a rooftop I would.  This is my rooftop today.  

Do me a favor... place your right hand on your left shoulder and hold it there.  Place your left hand on your right shoulder.  Now close your eyes, take a slow cleansing breath, and squeeze gently.  This is a hug, from me to you.

I may not talk to you every day, or even every week or every month.  That's okay because I know that true friendships can endure the test of time and distance.  WE endure the test of time and distance... and chronic illness.

 

Live your best life,
Ellen Schnakenberg
~patient educator and advocate

Desiderata - Peace for the Mind, Body and Soul

I ran across this video that includes the words of Desiderata by Max Ehrmann, spoken by Les Crane.  It made me smile today.

God created the universe, and His plans for our life are often hidden from us.  Those of us struggling with chronic illness tend to forget that our sight is limited.  However, I know that I am where I am supposed to be this day...

"...You are a child of the universe.  No less than the trees and the stars.  You have a right to be here.  And whether or not it is clear to you, no doubt the universe is unfolding as it should..."

Live your best life,
Ellen Schnakenberg
~patient educator and advocate