Help wanted

June is coming to a close, and I have been active and engaged with migraine advocacy and awareness.  The work is fulfilling and it is personally uplifting to know that I can reach out and help others right from my own home.   The availability of online communities which offer support to one another and validate real life experiences is not to be underestimated.  Many of us lead quieter lives which keep us more at home some days or for extensive periods of time depending upon our level of disability.  It is a fine tight rope to walk and balance the inside, quieter world with the louder, outside one.  

 

At the present moment, I am eagerly awaiting the new drug I mentioned in my last post.   It should soon arrive and I am actually looking forward to giving myself another shot!  Lol!  The things we desperate chronic migraineurs do for relief.  Well, this is just eagerly grasping for any and all reasonable options.  This is called HOPE.   

As my purple-streaked hair fades, my work does not.   There is much more to be done.  I will continue to bring awareness and offer my story of hope and courage that it may benefit others.  Hopefully, they may discover strength and insight to move forward in their own journey.   

I think it is important to find our own unique calling and pray for strength and wisdom to carry out that calling.   It is crucial not to compare with others.  We are better off when we connect and not compare.   That is how we best help one another.   I trust that the Lord will always equip me for the work He is calling me to do.    I know He will.  

Without this particular trial, I would not be who I am in Christ today.   My daily walk with chronic M teaches me to trust and surrender ALL to Him.   Some days are really ugly and messy. Some days are pretty good and colorful.    Some days are in the mixed up middle.  And , that’s okay! It really is.  

Friends, thank you for all you do to lift me up and carry me when I can’t walk another step.   It is your love and support and strength that give me the power to move forward.   God bless all of you. 

In light of all the hurt and wrongdoing and misunderstanding and out of control egos today, let’s take the time to notice others who may need our intentional presence of love and listening.   May we provide a safe place for their heart and soul to land without judgement.  There is no place for arrogance or bullying.  There is only a place for compassion.  

Summer is here!

Summer has officially arrived in all of its glory.   After our crazy “Spring”, I think we are all ready for a change.  I, for one, am excited about stepping fully into this season which is full of warmth and light.  Nature is so alive and colorful and bearing much fruit. 

Ever since I was little, I longed for summer days just hanging out with friends participating in carefree moments that took a break from academics and so called structured learning.  There was always something to do, but better yet, there was always nothing to do.  As long as the day ended with eating juicy slices of watermelon, pondering the ever evolving night skyscape,  and catching fireflies, then all seemed right with the world.  

My days sure look a lot different from my childhood memories of feeling carefree due to living with chronic migraine disease.    I used to LOVE being in the sun at poolside or the beach.  I could take long walks in the heat and sun and never think a thing of it.  Now, I need to be very mindful of my stricter boundaries on navigating my summer days.   

Most migraineurs experience photosensitivty from both the sunlight as well as many inside bright, fluorescent lights, and the new LEDs are terrible!  I go nowhere without my shades and don them wherever and whenever deemed necessary to withstand the unpleasant environment.  Big box stores are really a no-no for me more than 15 minutes.  Frequently I am also wearing my baseball cap with a nice visor to help cut glare as well.   

As far as the heat, I don’t tolerate that well anymore.  I stay mostly in the shade if possible and keep cool inside during the real heat of the day.   By evening time, I take walks with my hubby on the boardwalk or in our neighborhood while  enjoying the beautiful summer sunsets.   It is all good. I live and move with great gratitude for every second spent out of a dark room too sick to move.   

So here is to eating juicy watermelon and watching sunsets and catching fireflies!  Here is to gathering for picnics and sharing life with one another! Here is to choosing joy and offering kindness to the world around us.  

Here is to wearing shades today in solidarity for migraine awareness 😎😎

May everyone have an awesome summer!! 

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.