Wednesday, March 27, 2013

I Need Your Help!

Did you know that we now have an official patient organization for people with Migraines and other headache disorders?  It was formed under the auspices of the American Headache Society, and it's mission can be found in the simple acronym EASE.  The purpose of this group is to Educate, to Increase awareness about Migraines and other headache disorders, Support those who suffer with headache disorders and their families, and Engage patients so that we can work together to make a difference!

This is not just for individuals who are disabled by headache disorders but for anyone who wants to see progress being made in the areas of Migraine and other headache disorder treatment, education, research, perception, awareness and funding.  In the U.S. alone, 37 million people suffer from Migraines (and that's not even including all the other headache disorders such as Cluster Headaches, aka, the suicide headache).  5 million people in the US have at least one Migraine a month.  That's 12 days a year when they are burdened with, if not incapacitated, by the pain and symptoms of a Migraine.  Most Americans can expect to live more than 75 years.  If a person were to suffer a migraine a month for even fifty years, it would mean the loss of 600 days of their lives - that's almost two years!!  Staggering, isn't it?  But I believe, along with others, that this can change through the very things for which AHMA stands - education, advocacy, support and engagement.

Some of you may ask, "why should I join an organization like this?"  My friend, Teri Robert, the current chair of AHMA, explains that in addition to raising awareness and increasing research that AHMA will also provide the newest information regarding Migraine and headache research and treatment, will hold webinars to educate both patients and doctors, will start support groups, will have an advocate mentoring program and an annual patient conference.  There is also a forum where all members (patients, caregivers and doctors) can confidentially and honestly share with one another.  

And the cherry on the top? The AHMA board is comprised of five patients and five of the top Migraine and headache specialists in the United States!!  That's right - real dialogue and interaction between our doctors and the patients!  Conceptually, the patient board members will direct the organization, and the physicians will provide assistance.  The patient conferences will have top notch Migraine and headache specialists presenting, in addition to all the other goodies already being planned for the first conference on November 24, 2013 in Scottsdale, Arizona.

So, why should you join??  Because for only $15 a year, you can be a part of making a real and tangible difference in your own life and in the lives of the millions of people who suffer with these disorders.  As an organized and formal vehicle, we can work together to improve research funding so that through new knowledge can lead to new and innovative treatments, and in doing so might ensure that you or your children or grandchildren might not suffer as much in the years to come!  As an organized and formal group, we can raise public awareness that Migraines and other headache disorders are not "just" a headache!  Let's help change the statistics!  Let's help ourselves and those we love who suffer from headache disorders find both support and hope for the future!  

I've had friends who have asked why they should join if they already interact with others who suffer with headache disorders, feel like they know everything they need to know, follow an expert blog on Migraines or if they don't really feel the need to interact with other sufferers.  The reason is because there is strength in numbers! When we work together, we CAN make a difference.  I am currently disabled by my Migraines and unable to work the job I adore because of them.  One of my great hopes is that through a group like AHMA, my nieces and nephews will never have to experience what I have over the past forty plus years.

Please take the time to go to the AHMA website and join today!

Friday, March 15, 2013

Identity Crisis

Although I have had Migraines since childhood, it was not until about four years ago that they became chronic and intractable causing me to have to leave the career that I loved behind.  As I began this journey, I purposefully set out to walk through this on my own terms.  The chief among these was not to live with a victim mentality.  While I had no choice about the severity of my Migraines, I realized that I did have a choice about my attitude and my behaviors.  

While I am open with people about the severity and chronicity of my Migraines, I want to somehow live "above" them.  I know inside that my attitude and behaviors will determine my psychological well-being as I walk this journey.  To that end, I strive to be as upbeat as possible, to refrain from complaining about and cataloging my pain, and to have an attitude which focuses on hope.  This frequently means that I present a face to the world which may not show the severity of my pain and disability.  

However, over the last few weeks, I have had a bit of an identity crisis where a number of people have mentioned to me or to others that my Migraines were not as severe as x person's.  Now, I'm not one to get into a "who has the most pain" match with anyone.  In fact, I deliberately try to act and speak as if I am not in pain - not because I don't want anyone to know but because it is what I have to do for my own psychological well-being.  The simple fact is that if I focus on my pain and give into my desire to moan, cry, curse and despair, I have but a very bleak life to behold.  I don't think I would be able to endure such a life.  However, when I "act as if" I am feeling better than I am, it helps me to get through the moment.  This has led to some people questioning the severity of my pain and to others questioning my authenticity.  

There is a part of me that wonders if I lived and acted how I really feel if others would take me more seriously and put more effort towards helping and understanding my illness.  I have to admit to wondering if I've shot myself in the foot because of this.  Would others (including doctors) help me more if I wore my "sick face" and retreated to bed in tears?  Has my choice of attitude presented an oxymoron to others that tells them something different than what I truly experience?

This is something which now lies heavily on my heart.  But it is also something which honestly makes me a big frustrated.  Yes, when I had episodic Migraines, it was natural to moan and groan and go to bed due to the pain.  But now that pain is a daily, 24/7 experience, maybe I've become accustomed to it - maybe I've developed some coping strategies which help me to give quality to my life.  These include hiding my Migraines when I can because I don't want a life that is defined by Migraines.  I don't want to be a walking billboard for all the effects of Migraines. It also includes me smiling even when I'm hurting; it means that I try to look for the good and for things for which I can be grateful.  It means that I try to participate in life to the degree possible and that I save my suffering for private moments as much as possible.   I have also found that in reaching out to others to encourage and support them that I take the focus off of me which, at least, psychologically lowers my perception of pain.  Does this mean that my pain is any less real or severe?  Not a chance!

I'm not suggesting that I am doing it the "correct" way - how could anyone know that?  I'm just saying that I'm doing what works for me a large amount of the time.  Are there days when I can't function at all?  Are there times when I weep because of the pain?  Are there times when I dread the future because I can't see a life without pain?  Yes, but I can't live focused on that.  If that makes doctors, friends, and family second guess the severity and frequency of my pain, I guess that's the cost I have to pay for I know that if I give in to this
on a regular basis that I will also be inviting despair, depression, suicidal ideation, and anxiety into my life.  And I choose not to do that.  It does not make me a "strong" person nor does it make me a malingerer or exaggerator - it simply makes me a person who is desperate to do whatever it takes to manage and to preserve some quality of life.  The bottom line is the question as to whether I will let Migraines dominate me or if I will find a way to live at peace with them.  Do I want a cure? Yes!  Do I wish things were different? Yes!  Am I going to let Migraines define my attitude toward life? Absolutely not!!

But I would ask that before you judge me that you take the time to ask about my experience.  I am willing to share that - I'm just not willing to live it out loud.