A mountain vista

A long overdue get-a-way was how my hubby and I of thirty years spent our anniversary.   We could hardly believe this was the first, real small vacation we took that focused on just US.  All of our other times away involved kids and family or work commitments.   We would always get lost in the shuffle somehow and then return home and feel as though we didn’t actually focus on “couple time”. Let’s not forget traveling to visit special doctors and hospitals which totally put the yummy icing on the cake.  Geez...

We were blessed this time to visit friends whom we haven’t seen in many many years.   What a delightful treat!   We even took a day to make a special drive to peek at where I first lived after college and had my first nursing job.  From there, we ate lunch with dear friends and even saw our priest who married us.  He gave us a special blessing which will hopefully carry through for another thirty years!   The afternoon was spent with fond reminiscing and laughter.  Our hearts were definitely lifted up and filled with joy.  

Praying that my head and body would hold up through the next part of the trip, we continued down to VA to visit more friends whom we haven’t seen in years.   What an absolute delight.  We stayed at their bed and breakfast and were royally spoiled.  I wish to give a shout out to Windridge Manor near Lynchburg,VA.   Kelly and John Heckman are the owners, and they truly have an amazing place!  They focus on it being a wedding venue, but we were able to stay a few days as guests.   Oh.my.gosh.   The home and property are stunning.   

During our visit, I actually saw my husband RELAX.  Yep, you read it correctly—- RELAX.  He breathed in and exhaled slowly and purposefully for those few days.  Woo hoo!  We enjoyed a combination of sitting and rocking on their balcony as well as some sightseeing around the area.  The weather was extremely hot and humid so that limited our time outdoors.  No problem.  We sat ourselves down in their manor and just chatted.  We intentionally leaned into one another, listened, and shared life together.   How wonderful is that? 

Life slowed down a bit for those few days not only because we didn’t have a rushed agenda to fulfill but also because we could barely move after breakfast.  I am not kidding.  Kelly prepared a breakfast fit for a king and queen!  It was enough food to last us all day!  Unbelievable you all!  

Too funny and totally a “Kelly thing”!  

A real gift was my ability to take each day, check in with my head, and move forward with some plans whether they be sightseeing or taking it easy at the manor.  I believe my new medicine is slowly helping decrease some tough M attacks.  I am more able to abort them with the necessary meds and not be completely flat out in bed.  Praise God.  Gently stepping back into my life is refreshing to say the least. 

Michael and I talked about our thirty plus years together and we couldn’t believe how fast those years have flown by.  Unbelievable really.  We talked about the good, the not so good, and all the in between.   Most days consist of the messy middle and the normal in between. These past eight years of my illness have been a real difficult challenge to our marriage in many ways.  But—-we are better and stronger for it.  I guess God really does know what crosses we can bear only WITH Him. He placed the right people in our path to help us along the journey.   And He still does.   

September is a time for new beginnings and a new season.  Change is all around us. Some of it good and some may be more challenging which could be tough to navigate. It is not all sunshine and rainbows. I get that.  I really do.  Physically my body has a rough time with more painful days slipping into another season.  I will prepare as I can and then go with the flow.  We all realize that the hardships don’t get easier just because we transition from summer to fall.  Things take time to work themselves out.  Hopefully, day by day, some of our longings and desires will come to fruition.  

Michael and I are extremely grateful for our mini getaway. We love our anniversary being Labor Day weekend because it is in between Summer and the beginning of Fall.  It is the letting go as well as the receiving of new gifts and opportunities.  

Friends, I wish you a smooth transition from Summer to Fall, and I hope you are looking forward to new adventures and opportunities.   May the hot apple cider, pumpkin loafs, and the changing of leaves bring peace and calm to you.  

Time for another transition

A few days ago I found myself on a loud and crowded airplane traveling from CT to the University of Illinois at Urbana Champagne to help get our son settled to begin his new adventures in graduate school.  Just a few short months ago I traveled by plane to Austin,Texas for his college graduation!  WHERE HAS THE SUMMER GONE?!  I know I have asked myself this question as long as I can remember, but it truly seems as though my favorite season of Summer whirls by quicker and quicker every year.  My bare feet have barely spent time in the sand.  

Sitting on the plane traveling to the Midwest, I smile and breathe more peacefully because I feel more confident and less anxious about traveling this time.  I have had two past experiences of practicing the “M drill” and what that entails to survive my excursions.  Actually I don’t just want to SURVIVE them, I want to THRIVE in them.  

The biggest comfort this time was being able to enjoy the in flight TV which suited me perfectly.  I got to put on the head phones and watch my favorite Hallmark station, and I actually saw a movie I hadn’t seen before! Win Win!  This took up practically the entire flight time.   I was well medicated for my M and I felt like I was a bit in la la land anyway.  

The real challenge came when I had to navigate Chicago Ohare airport.  Unbelievable.  To say it is huge and busy and noisy is an understatement.   We had a four hour or so layover so that was a real picnic.  NOT.  While the shops were fun to browse and the eateries kind of fun, that all wore off quickly.   I was only amused for about an hour, and after that, I wanted to lie down for my nap and get quiet.  I would walk around, then sit, then stretch and back up to walk again.  Rinse and repeat for several hours.  I had a few good cups of coffee as well to keep going!  

People watching at an airport is quite the sport.  I usually wonder where they are going, from where they came, and what is their particular story.  Nowadays everyone is practically on their cell phones constantly and they barely look up to see where they are walking.  It is kind of dangerous, actually, in a busy place like an airport.    I kept my earplugs in and tried to block out at least some of the overbearing volume of all the sensory overload.  I kept grounded and focused on keeping my body and mind calm.  This time I was able to do so much better and easier than my trip in May.  I realized that I have been preparing myself well for how I have to manage and navigate traveling with chronic M.  

This experience of moving our son to another place so he can start his new adventures marks another momma transition.  He is the youngest of four sons, and I truly can’t grasp the reality of how he arrived so fast to this present moment and opportunity.  He has always been one determined and independent young child who grew up into one determined and independent young adult. He has a long road ahead of him with his program.  God bless him. 

Our home this summer has been full of life, crazy chaos, joy and laughter, and difficult messes as well.  Every time I try and “prepare” for the next transition, I realize I am left floundering and unable.  The transition just happens, and the key to coping is just going with it and adapting as best as possible.  This is a valuable lesson I have learned living with chronic illness.  By accepting what is and not fighting against it all the time, I allow space for the adapting and adjusting.   As the tides grow bigger and scarier, I learn to adjust my sails and continue on.  

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.