Monday, June 11, 2018

Getting my purple on

June is all about the color purple and raising awareness of the facts of living with headache and migraine disease.   Luckily for  me, I have always loved the color purple, so the more the better in my mind!  Just as many diseases have colors and mottos and months dedicated to their awareness, June is my chance to educate and advocate for those living with this often debilitating illness.   

I will share a few sobering facts from the American Migraine Foundation.

Migraine disease is one of the 20 most disabling medical illnesses in the world and the 12th most disabling disorder in the U.S. 
More than 90% of migraine sufferers can’t function normally during an attack.
The World Health Organization has stated that severe migraine attacks are as disabling as quadriplegia.

More than 4 million adults experience Chronic Migraine.  
For more than 90% of those affected, migraine interferes with their education, career, and social lives. 
Migraine is three times more common in women than in men. 
70% of children who experience migraine have an immediate family member who suffers or has suffered from migraine.  
There are over 100 different types of headache. 
Migraine costs the U.S. 113 million workdays every year.   

These are just a few of the facts that are significant in showing the general public that Migraine is not a simple, little headache that can go away with a few aspirin and then life returns to “normal.”   

Like many diseases, there is a long continuum that people fit into depending upon their symptoms. While some individuals encounter infrequent and milder forms of symptoms and attacks relieved by infrequent use of medication, there are those of us who suffer at the other end with frequent and debilitating attacks which are difficult to manage.    The American Migraine Foundation states that “ there are no two patients who are the same.”    

Since migraine disease is basically an invisible illness, people have a hard time understanding the severity of the suffering.  We may smile, put on our make up, and attempt to attend activities that are fun which then confuses the general public.  We may “look just fine” so immediately that means we are feeling great. WRONG! We so desperately WANT to participate in our wonderful lives that we grin and bear the awful symptoms in hopes of enjoying some normalcy.  This is not easy. 

The plethora of medications is another issue all together.    They have so many awful side effects which add to already feeling poorly. Ugh. No need for details but suffice to say that the side effects wreak havoc on our bodies both physically and emotionally.   And it takes sometimes months to see if one new drug will actually “work” and be tolerated.   If not, then the whole treatment regimen starts all over again. For me, my poor body doesn’t know if it is coming or going some days.  

A good take-a-way would be to please be patient with those whom you know are suffering.  They may cancel plans a lot.  Some days they may find it difficult to even get out of bed. They may be emotionally fragile.  They may feel completely at their wits end.  Living with a chronic illness of any sort has its challenges, and it is always good to remember that no one ever really knows what tough “stuff” others are enduring on a daily basis.    Sitting quietly while listening and offering your unique presence is so important to help those of us to cope.  

I will continue to educate and advocate all year round, not just in June, of course.  

However, let’s get our purple on and stand with one another in gaining awareness of this complex disease. 

So much more research needs to be done and money raised. Thankfully,  my wonderful and brilliant headache specialist continues to build his practice while he clinically cares for patients and continues conducting cutting edge research.   I am blessed beyond belief to be under his care.  

Hopefully my next post will be about my trying the new migraine drug that is all the rage with our headache and migraine community!  Woo hoo!  We are all doing the happy dance as it is supposed to be the deal breaker in reducing the number of attacks per month.  Yay!!  

I always keep up hope.  I know that God is always good, and He is with me every step of the way.   I desire to share my story so as to help others on their journey and lead them to a better place of healing. 

The next time you wear purple or buy a purple “something”, think of M awareness and offer a little, wee prayer for us.   Thank you, my friends.  God bless. 






































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