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. 

Sunday, May 27, 2018

A commencement ceremony, a landscape of pretty cacti, and a little bit of crazy

It gets me every time.  The band starts to play “Pomp and Circumstance”, and I fall apart.  As I watch my son and the other graduates of the proud class of 2018 file into the arena, I can barely see straight to take photos.  I yell, clap, and fiddle with my phone, but mostly I become one, hot mess.  I take some deep cleansing breaths just to calm down.   It is as if I am not part of this reality. Instead, my mind shifts focus to all the years leading up to this very special event. Flashbacks run through my mind as I think about his growing up so quickly that it seems it all happened in a heartbeat.  Why just recently he made his decision to attend UTAustin!  Now he is finished! How can this be?! I desperately want time to stand still just for awhile.  If these few moments could be freeze-framed, I would be happy.   As the graduates march to their seats and file in accordingly, I do my best to regroup and return to the present moment.  

I realize this is not a new scenario for many parents.  The mixed emotions of the days that lead up to a child’s graduation are deep and heartfelt in ways that words cannot accurately express.  I think that since this is my last son’s college graduation, it feels extra bittersweet.   This is a mama’s sappy heart which holds the greatest gratitude for every single ounce of grace that brings our family together on this special and proud occasion.  Gathering together and witnessing all four of our sons’ milestones over the years are nothing short of miracles.   

The other miracle lies in the fact that our family (with all of its challenges and limitations) even made it to Austin in one piece! Believe me, anyone who knows us can attest to this. We aren’t the kind of family that jumps out of bed and easily makes our way to some important destination. We jump through hoops and traverse obstacles as if we are in military training even for the simplest of get-a-ways.  I have been preparing for this trip for the past four years right after my son stepped foot onto the campus.  I made up my mind I WOULD gain the strength and courage to be there for his commencement. This is what mamas do!!  

I asked anybody and everybody to please pray for us, and I wasn’t kidding.  

God came through BIG!  Doesn’t He always??    He guided and protected our family through the entire two weeks of our trip which certainly consisted of some pain and difficulties.  However, each day unfolded beautifully, simply, and peacefully.  We couldn’t have asked for more.  

Exploring the Austin area was a fun little adventure.   Our oldest son now lives there out in the hill country.  We enjoyed seeing his place of residence for the first time. We are thankful for his transition to the area. He is an expert tour guide and knows his way around the city as well as the hill country ——and of course, knows all the yummy barbecue dives!!   He certainly introduced us to the local Texas cuisine. I don’t think we could have navigated the tricky city driving without his expertise and enthusiasm.  

In addition to the local cuisine, observing the variety of desert cacti was fun.  I really liked the diverse foliage with the unique blooming cacti all over the place. Having the opportunity to visit the LBJ Wildflower gardens was a real treat.  The heat was bearable and not oppressive, thankfully, so we were able to stroll around the pathways and take in nature’s beauty.   

We helped pack up our son’s four years of “stuff” as well as memories. He said his goodbyes to friends and professors and is now looking forward to his next big adventures.  We are so very proud of the young man he is becoming. 

Overall, our crazy family schlepped our way around the city in our own crazy manner.  It wasn’t always easy, but we did it, and we are proud of ourselves!!  We took care of one another and gave one another courage to keep moving forward. 

Upon return I am now exhausted.  My stamina and strength have disappeared.   I will need several days to recover and allow my body to rest.  This is okay because the important thing is that I made the trip with my cantankerous head for which I am deeply grateful.  New boundaries were stretched and new journeys and adventures lie ahead.   Thanks be to God.  


Monday, April 30, 2018

As the fog lifts

Spring fog is both haunting and beautiful simultaneously.  As I sip coffee in the morning, my eyes behold the haziness of the landscape.   I can barely see the birds on the feeder pecking for food or the silly grey squirrels chasing one another around my yard.  The color of the tree buds are not quite clear yet. My sleepy eyes try to adjust to the grey fog in hopes that it will soon burn off and give way to some sun later on. 

Living near the water increases the chances of morning fog compared to that of living inland.  I have learned this over the years.  When I arise from my sleep to start the day, my mood is immediately affected when I see a heavy, grey fog blanketing the neighborhood.  It  appears drab and dreary.  Many times I become impatient with it because I desire to experience a bright, sunny morning with some sort of familiar clarity. 

I need to remind myself that Mother Nature takes her time.   She doesn’t rush in lifting her veil.  Slowly but surely the vanishing fog gives way to some vibrant Spring colors.  It is best for me to sit with the process and practice patience and not complain.   

I liken Mother Nature’s fog experience to that of my own personal one.  Chronic M is one continual cycle of up and down, in and out, light and dark.  As the relentless pain phase finally gives way to relief, my body immediately enters a fog phase, better known as the postdromal phase of M. Believe me, it can be just as debilitating as the pain only in a different way.  It feels much like a severe  hangover without the “fun” the night before.  

My brain fog takes over my entire body, not just my head.  I don’t see the world clearly.  My senses are off balance and I can only operate on one speed. SLOW.  I can’t always comprehend what others are saying.  My reading and writing skills diminish greatly.  I have memory gaps which can be really frustrating.  Plainly put, I feel like a total wack-a-doodle!!  

My entire body is SO exhausted from the attack.  It is a type of fatigue that is not really relieved by resting or napping.  It actually just has to wear off on its own.  This feels like it takes forever. When I wander around in my own “M fog”, it makes me feel as if I could jump out of my skin.  No matter how hard I try to push through or speed up the process, it just doesn’t work.  (And no, ten cups of coffee a day don’t help either!).    The more I push, the worse I feel.  Between the M hangover and all the meds I have to take during the attack, I feel as though there is a huge veil over me.  Crazy. 

However, I keep reminding myself that this too shall pass and once again I will return to the land of the living, but sometimes I totally lose patience. 

As I sit here on this foggy Spring morning writing this post, I am emerging from my own M  brain fog and starting to feel lighter and brighter. I sit with joy and gratitude.  I count my many blessings as well as the strength with which God continually provides me to walk this journey.  

In the truthful words of my mama, “Fog means sunshine is coming!”  I need reminding of this every now and then. 

Monday, April 9, 2018

My bunny birthday

My fifty something birthday is soon coming up, and instead of wearing flip flops, I will  more than likely be wearing warm socks and boots.   This year the arrival of Spring is taking its good ole’ time.    Up in New England, we have experienced snow in March and it is still not letting go in April.  It is reminding us that Mother Nature is in charge.  

The pure joy of seeing buds bloom while stepping outside to temps that don’t feel raw, damp and cold will be extra special. Guarded anticipation of actively seeing new life shoot up from the dark, brown earth is exciting.  It is like going on a treasure hunt and discovering the beauty of the continual life cycle of seasons.  No matter how long or harsh Winter was for all of us,  it is time to let go now.

Each year around Easter time, I unpack my large bunny collection and display my beautiful and plentiful bunnies all over the house—-both inside and out.  I love them, and I recall precious memories from where they came and from whom.  Each bunny has its own unique story, and if it were alive, I would sit and listen while it spoke to me. I never tire of meticulously unwrapping each bunny and finding a special place for it.  It takes way more time to set out this bunny collection than it does my Christmas decorations! 

  For fifty some years, family and friends have cared  enough to take the time to find “just the right one” for me.  How special and kind is that?  I am known as the bunny lady!  All in fun for sure.  I never pack away the entire collection, and there are always plenty that stay hopping around my house year round.  

I am one who is not really into collectibles per say, but this bunny collection started when I was born, and it just kept growing without my participation.   Every once in awhile I do add to it because I see one that I just “must have”!! Other than that, it is always such a fun surprise to open up a package and see the clever bunny chosen just for me.  As I receive with joy, I see the giver smile with joy as well.  

Life can bring us down every now and then, and it sure helps to have something significant at our disposal to lift our spirits.   When setting up my bunny collection this year, it came to mind just how cute and cheerful these bunnies are to me.   However, a few years ago I was so sick and weak and depressed that I didn’t even have the energy to display them.   Frankly, I didn’t care.   That was a huge red flag to anyone who knew me.   The house was not hopping with joy.  It was dragging with defeat.  

But, this year, the bunnies are out and making mischief as usual.  Lol! They brighten my days, and I enjoy showing them to anyone who stops by for a visit.  The majority will stay out  through Spring.  Maybe some year I will have the presence of mind to count them all.   

Do you have a special collection that is unique to you?  Maybe you have a wonderful collection of musical instruments because of your love for playing music.  Are you an artist?   I imagine you would have brushes, pencils and paint that keep you busy.  Books, books, and more books would be stacked upon the shelves for those who are avid readers.    As a knitter, I also have a lovely supply of yarn and needles.   The list could be endless.   

It is important to take the time to breathe and step away from the crazy pace of society’s demands.   Let’s be more intentional about connecting with what grounds us.  I think we will feel more refreshed and renewed by the end of the day.  

Now it is time for “Spring cleaning” both around our homes as well in our hearts. 

Happy Spring, dear friends! 

And no, I have never owned a real bunny.  Ever.    

Bunnies in the dining room

Yep, my bunny bathroom 

Tuesday, March 27, 2018

Is it Spring...yet?

The season of Spring, according to the calendar, is upon us.  It technically arrived over a week ago, but here in New England, we are too busy experiencing nor’easters!  Yep.  This month of March has been crazy this year.  February was calmer.  Well, Mother Nature keeps us always on our toes. We aren’t the only ones shoveling snow and braving the cold temps. The entire east coast is having its share of Spring teasing. 

I personally enjoy the change of seasons because it helps me feel the rhythm of life, but by this time in March, I am SO ready for my capris and sandals and the freedom of not bundling up so darn much.  

The sacred season of Lent is coming to a close, and we are now in Holy Week.  No matter the weather fluctuations, God’s everlasting love and mercy for us never EVER changes.  To reflect upon Christ’s Passion and death prepares our minds and hearts for His glorious resurrection.  

From darkness, there will be Light.     

From the darkness of Winter, there comes Spring light and life. 

I will be returning to the world of social media once again after my respite during Lent.  I feel more refreshed and ready to connect both online as well as in person.   I hope I will offer less phone holding and more hand holding where possible.  

May all of you who do celebrate this most Holy Season of Easter be blessed in full. And may we all start seeing and feeling the warmth and light of Spring!   

Monday, February 12, 2018

Into the quiet

The penitential season of Lent is upon us.  These upcoming forty days are important for me to prepare for the Glorious Resurrection.  Each year I approach this sacred season with intent and purpose of deepening my relationship with Christ.   That being noted, I am going to fast from unnecessary social media.   I am choosing not to be involved with Facebook or Instagram.  I do not have a twitter account so that is easy.  Lol!   

 If you wish to contact me, please do so via email or texting my cell.  And yes, if you so desire to write me a letter, by all means do!   Hand written cards and notes are still beautiful to receive.  

Living with chronic M continually teaches me the value of quiet and simple.  The world says be louder, bigger, faster, consume more, and run to get to the top. I get weary trying to keep up with the world’s standards.  I am thankful that I no longer wish to do so.  God has given me that gift.  

 I wish to tune out and tone down this Lent.   

I desire to dig deeper into God’s Word as well as dig deeper into my prayer life.  

I will resume blogging after Easter.   

Wishing all of you a most blessed and grace-filled Lent.  

Thursday, January 18, 2018

In need of Light

The “taking down of Christmas” (as people say) always depresses me. In our home, we leave the decorations up at least through Epihany, and I might even stretch that out a bit.  I feel the sacred season of Christmas is just getting started when the whole taking down part and wrapping up the manger scene, lights, and ornaments get packed into boxes and bins.  Now for the commercialization of the holiday, that seems like a different story.  The day after Halloween the stores display all the “holiday stuff” so that by December 26, I guess we all become weary of the tinsel and blow up plastic Santas and reindeer.  

I am not trying to be judgmental because everyone has their preference of displaying the season according to their belief system. However, for me, just mentally gearing up to “take down” special keepsakes gets a bit harder each year.  

One of my biggest losses that I feel is the loss of light. We string lights on our Christmas tree, display outside lights, and put candles in the windows.  This is wonderful here in New England where our Winter days are so short and one feels like going to bed at 7pm practically!  Lights help to set a smooth rhythm and flow to the dark Winter days and evenings.  It is also fun to notice as the days get a tad longer after the Winter Solstice and the sunsets grow even more beautiful.  

My body and soul crave light (even though I do wear dark sunglasses a lot for protection due to chronic M).  I love the twinking of the soft Christmas tree colored lights and the dimly lit (non smelly candles) on our mantle.   Sipping my morning coffee in the family room with just those lights on starts my day off on a positive and peaceful path. The glow is comforting as the natural light of daybreak peeks ever so sweetly in my windows.  

This year I am trying a slightly different approach.   I just couldn’t bare to strip everything down and pack it away, so with a twinkle in my eye, my hubby knew I was up to something. I suggested we bring in our white winter tree from outside and place it in the same spot as where our traditional Christmas tree was. I just added white lights and wrapped it in some colored garland.   It has more of a winter affect I guess.   Hopefully I will be ready by Easter to take it down only to put up Spring and Easter lights! Lol!  

The physical lights help keep my mood uplifted, but they also remind me daily of the Light of Christ who is our Savior of the world.  

I am in need of light.

I am in need of Light.