Turtle crossing

“Slow and steady wins the race” says my kind and compassionate headache specialist.  He senses my frustration and impatience when it comes to living with and managing chronic M. He offers wise words that validate my feelings while also bringing hope to my situation.  For eight years I have been ingesting and injecting medicines, vitamins, and supplements galore.  I also wear non-invasive medical devices on my head that make me appear as some alien being on a Sci-fi show.   I do anything I can to help myself cope with all of it.  

In addition to the western medicines, I incorporate other alternative disciplines and therapies to aid in the whole treatment approach to healing.   I find it all to be very helpful.   I am deeply grateful for my wonderful and talented therapists who walk this journey with me. However, most days I just feel plain TIRED and SLOW.  Most of the medicines I take have nasty side effects which really zap any and all energy I may posses.  If it isn’t the pain cycles from the attacks then it is the meds that keep me kind of loopy and lethargic.    I NEVER get enough sleep or rest to feel I can keep up with the rest of the world.  

This is where I know my Dr is trying to show me that by slowly introducing new treatments over time that there is no one quick fix and that it is over the long haul I need to remain patient.   This being said, I mentioned in my June blog that I was a candidate to try the brand new Aimovig drug made especially for the treatment of migraines.  Hallelujah!  Well, I gave myself the first injection a little over two weeks ago, and I am seeing “some”results.  This is a preventive medicine that works over time and may take months for noticeable differences.   Again—-SLOW and steady wins the race.  

About a month ago, I was in my car traveling on a back road behind our middle school and I noticed a rather medium sized turtle trying to cross the road in front of me.  I stopped and waited until he safely reached his destination with his very slow and steady pace.   There were no cars behind me so I was not holding up traffic.  As he crossed, I thought about myself.   I feel OLD and SLOW most days.  I can’t exercise at the pace I used to.  My gait for walking is much slower.  If I go from sitting to standing I need to be careful or else I will get dizzy and faint like.  As I see my friends who are my age busy with keeping in shape, sometimes I feel frustrated and discouraged at my limitations.  However, if I look back on my journey, I can now see just how far I have come. 

 I decided to wait for that turtle because I respected his pace and purpose.  My tribe does the same for me too.  How grateful I am.  

I am being humbled by slowing down.  I actually see and hear and feel more of God’s magnificent beauty right in front of me simply because I am not sprinting by it.   I used to be more like the hare in the famous fable of the tortoise and the hare, but now I am certainly more like the turtle.  I guess this isn’t so bad after all.  

“Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the Lord has promised to those who love him. “.        James 1:12 (NIV). 

This is the ultimate race; I hope to finish this one well.   

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. 

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.  

 

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. 

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