Walking forward with HOPE

What do "fashionable" dark shades, the color purple, baseball cap, and loads of medicines and devices have in common, you ask?  The answer is easy----they all fit the description of a chronic migraineur.   These special tools for our toolkit help us manage on a day to day basis to keep afloat in the perilous waters of chronic migraine.

Since June is Migraine Awareness month, my hope is to shed more light on this disease not just for June but all year around.  For me, it is important to be a committed advocate in helping other migraine warriors so they don't feel alone walking their journeys.  I know first hand that belonging to several migraine communities provides me a sense of support and comfort.  We all share a common disease but our treatments vary from one person to the next, so it is helpful to share our stories with one another and voice our frustrations, disappointments, and successes.

Fortunately, in the past few years, researchers have been able to produce and market new drugs especially targeted for migraine which are now in use by
patients.  This is especially exciting news because many of the standard medications already approved for years are not exactly targeted for migraine.  They are really needed for other conditions.  We, migraineurs, get the left-over-hope-it-works medications.   This is so frustrating.

A few examples of the class of new medication is called the CGRP inhibitors which are used to prevent and treat migraine pain.  This medication blocks a protein which may cause inflammation and pain in the nervous system of chronic migraineurs.  Currently, there are four medications which are now in use, and they are: Ajovy, Ubrelvy, Aimovig, and Emgality.

   I personally take Aimovig and have been on it nearly two years.   It is a self injection once a month. I can happily report that it dials down my pain and other symptoms while reducing the overall number of serious attacks a month.  Bottom line---I function better.
The injection is easy.  I do experience significant side effects along with my conglomeration of other side effects from my other medications, but I am getting used to managing those symptoms as best I can.  There is always a sacrifice and a trade off somewhere.

In addition to traditional medications, there are also a few noninvasive  neuromodulation devices that are now approved for use that are safe with no side effects really.
These devices are advanced medical tools that can enhance the activity of the nervous system which, as research has discovered, may be effective in reducing migraine attacks as well as cluster headaches.  There are four currently in use which patients can decide with their doctor which ones to try.
The devices are:gammaCore/electrocore, sTMSMini/eNeura,Cefaly, and Nerivio Migra/Theranica.

 I personally tried the Cefaly several years ago and did not find it effective for me.  That device I wore on my forehead nightly as to prevent attacks.  I felt like a space alien.  The things we do for relief!   I currently am giving the Nerivio device a try but am not too impressed thus far.  The jury is still out for me.

My special toolkit involves: daily preventive medications taken all throughout the day to reduce the frequency and severity of attacks; rescue meds that I take at the onset of an attack to try and abort it from taking me to the point of no return;
vitamins and supplements like Vitamin B2, magnesium, calcium, and Vitamin D.  I have tried other natural supplements over the years and those alone were not helpful one bit. 

I go nowhere without lots of water, snacks, sunglasses, Vicks for blocking annoying smells and rubbing it on my temples to ease pain.  Peppermint oil is soothing, and I put it on my wrists to squash smells. It is so refreshing.  Peppermint is my new perfume.  LOL.  Earplugs come in handy in the most unexpected places.  Baseball caps with good brims are a must all year around. My big sunglasses are a must, and I freak out if I can't find them or forget them accidentally.   Last but not least, I wear lots of purple since it is the color of migraine awareness.  It wouldn't be June if I did not streak my hair purple.  It is a great conversation starter for awareness.   Glad it happens to be my favorite color!

I share these details with you, friends, to be transparent about the complicated nature of this disease.   It is so much more than a headache.  It affects so many parts of the nervous system.  Vertigo, slurred speech, foggy brain, auras, extreme exhaustion, mood changes, photophobia, nausea, vomiting, and so much more.
Unfortunately, children are prone to migraine and headache disorders as well as adults and often do not  get a proper diagnosis for years.

According to the American Migraine Foundation, "Out of the 37 million Americans living with migraine, no two patients are exactly alike."  This is why standard treatment does not work.  Each individual needs a tailored treatment plan just for them.  This is not an easy task.  This is why it is so important to advocate for ourselves as well as others who may be unable to do so because they are too disabled and lost in a sea of confusion and crashing waves.  I know because I was there years ago.  I barely thought I was going to survive the many harsh days of dreadful pain and depression.  It was dark season for me.   This is why I desire to help anyone I can by providing information and direction.  There is HOPE.  Always.

If you have stuck with me reading my rather long blog, I thank you.  I am fully aware there are pressing issues in the spotlight today with COVID 19 and raising awareness for social justice. I respect these issues immensely.  However, they do not diminish our struggles for figuring out a better way to lead a healthier life with chronic migraine.

If you or someone you know suffers with a headache or migraine disorder, please reach out to them and offer help.  Maybe even a ride to the doctor office or dropping off a meal or just lending a listening ear could do wonders.  The biggest thing NOT to do is offer some crazy "cure all" that Aunt Susie Q tried and she is now cured.  UGH.  There is no cure.  Only management for now.  Much more funding for research is needed.  According to the American Migraine Foundation, "Fewer than 5% of those living with chronic migraine have been seen by a healthcare provider, received an accurate diagnosis and obtained appropriate care.  Migraine is under-recognized, under-diagnosed, and under-treated."

On June 21, the Summer solstice, the migraine community is asking everyone to wear their dark shades in solidarity with the migraine world.  This is to promote awareness of this disease that affects over 1 billion people worldwide.  Please show the world that you care and support our campaign  by posting a photo to social media with the #ShadesForMigraine.  This means a lot.  Thank you!
May you experience a safe and joyful Summer.

It's been awhile

We are still in the midst of this crazy long and scary pandemic which is forcing us to still stay within relatively safe boundaries for the sake of everyone's health.
This is not easy and because we feel out of control as to pinpoint when this will be over, the waiting game continues.

I wrote about this pandemic right from the start when most of life was beginning to feel like everything was being turned upside down and inside out.  The weeks that have followed I have chosen to be quiet on my blog.  I have been processing all of this in my own way, and most of my writing I am keeping private for now.  Maybe at a later date after my heart and mind have come to terms with some issues, I will share.

The quiet days are not a burden for me as I have other projects which are beckoning my attention.  It has been cathartic to dig into some of them because they has given me an additional focus.  And yes, I am hooked into some Netflix series just like the rest of you!! Do not judge.  LOL.

 I am so grateful for steady health at the moment as well as that of my family.  Praise God.  Like most families, we are learning to adapt to new ways of communicating and connecting.  The ordinary becomes extraordinary even through FaceTime and zoom! Another thing for which to be thankful.

Slowly but surely some stricter limitations and boundaries are being lifted, and life is starting to get back on track in the tiniest of ways.  All good signs of hope and strength.  Someday we will soon touch and hug our loved ones without fear and experience profound joy once again.

Recently on my beach walks I discovered some precious message rocks filled with a simple direction, wisdom, and hope.   I always feel so uplifted when these treasures appear out of nowhere.  So many gifts and little miracles appear around us if we only take time to see them.

 Friends, may our God of Hope bless you on your healing journey through this time of trial. Also, may we all hold each other tighter in our minds and hearts and prayers while we reach out to those who may be extra vulnerable and lonely due to their own personal circumstances at this time.

A New Normal for Now

A few years ago when I was diagnosed with chronic M, I was introduced to these important and life giving words----A New Normal for Now.  My kind and compassionate cranial sacral therapist, Cheryl, whispered them gently to my weary and anxious face.  She continued to explain to me that life with a chronic illness would be more easily managed and lived well IF I accepted my existence with a different perspective.  At first I did not fully comprehend the positive meaning of those words.  I was so hurt and angry and frustrated that anything positive was not really on my radar screen.  "Accept a new normal?"  Well, that did take awhile to say the least. Believe me, it did not happen overnight.

Over months and years, I have done so.  The energy I put into wishing and hoping that my old existence and fun life would return to the way it was, had to be refocused into something else.  A transformed life of hope, purpose, and happiness slowly started to take root.  My anxiety and anger which wore me down day in and day out were carefully placed into their proper places.  I did not put those feelings aside totally because that would have been to deny myself they weren't really there in the first place. Denial is not healthy for healing.  Eventually, blossoms with beautiful fruit gradually stomped out the prickly thorns of  despair and darkness, which for me, was embracing a new normal.

Fast forward to 2020, and we, as a nation, are facing a deep and grave traumatic new way of living due to this COVID--19 virus.  These times are unprecedented, and we are all stumbling our way day to day and moment to moment.  The reality of the situation is this-----life the way we knew it is no longer.  It can't be.  Even if the virus is eradicated and wonderful miracles help heal us all, too much grief and trauma have settled into our souls and bodies.  I dare say we feel vulnerable beyond belief now. The fragility of life is always a given, but now it seems to be felt more desperately than ever before. How sad it is that we can't reach out and touch people whom we love.  No hugs or holding hands at a time we especially need one another's touch.  Thankfully, technology is keeping us connected via social media and internet support, but technology is no replacement for real life connection.  That is a no brainer. 

Since I have learned and put into practice living a "new normal, " I invite you to think about doing the same in some manner.   The world changed its practices and habits after 9/11, and this current pandemic will cause us to do the same.  It is amazing how resilient our minds, bodies, and souls can be especially in times of great stress.  Shifting our focus off of ourselves and onto others' needs gives us a purpose to get out of bed in the morning and try to lift someone else up during these difficult times.   The news frequently posts inspiring stories of how people are bringing joy to others in the midst of total chaos.  It is worthy to be aware of those stories and events while backing off of the grim news in order to give our souls a bit of a breather.

I am grateful over the past few years that chronic M has taught me a great deal on how "to be" in addition on how to be flexible and adaptable when choosing my "to do " activities.  Stay home and stay safe is not really too difficult for me.  I am not stressed as others are because I have had lots of practice. LOTS. (lol.) Carrying the same philosophy going forward, I know it is the best not only for me but for ALL of us, so this is good. Listening and following sound medical advice plus using our own common sense are practical and necessary right now.  Keeping our social distance is awkward and downright contrary to how humans like to live and communicate, but certain habits must be embraced for awhile.   In time, we will all be moving to another song and dance, and we will find our flow and rhythm once again.

In what areas might you rethink some of your old habits and possibly adapt to new ones?  Are you willing to become more flexible in one area of your thinking?  Would responding positively instead of reacting negatively in some areas and or situations help you slowly accept this new normal for now?


It is always best to live with great gratitude in our hearts because we are not ultimately in control of life's circumstances.  We are only in control of how we respond to those circumstances.  This is not a new philosophy, and it might seem a bit overused, but truth is truth.  I thank God everyday I can choose to live in gratitude.   I pray you can do the same.

Many heartfelt prayers to all of you, my friends, for safety and health during this pandemic, and may the grace of this Easter Season comfort your souls.

A bicycle built for two

Looking back at my blog entries I notice that my last post was several weeks ago at the beginning of Lent.  In some aspects, this Lenten season has gone by rather quickly, but now with this pandemic looming over us, the time dimension has changed drastically.  The days may feel long since most of our routines are taking on a new rhythm and flow which feel awkward at best.

If everyone would write their daily feelings and experiences during this time of crisis, each story would be full of details completely unique to them.  Since I best process my life through writing, I am finding my journaling even more valuable than ever before.  Getting my thoughts and feelings down on paper is helping me cope through this gigantic mess.  Although I could share many personal highs and lows, I will offer one perspective for now.

A few weeks ago our family set off for sunny Southern California to visit our eldest son who now resides there.  This was our first time touring the area in which we fully immersed ourselves even for the brief time there.  Our plan was to stay two weeks and really get a good sense of all there was to see.  Our son is an awesome tour guide, and he had our visit planned in details for months!  Boy, did life change quickly within a few days upon arrival.

Personally for me, this was a HUGE deal to even be well enough to make a trip across country hopping on two planes and experiencing some time differences.  Chronic M always tags along no matter what, but now I am in a better place of management.  Since I have traveled a bit more this past year, I am gaining courage more and more even though some situations and days can be rough.  My family knows how M can knock me down in a minute, so we adjusted our schedule to make it flexible enough to allow for rest in between sightseeing.  I love my family for their patience.

However, this time our lovely visit was not cut short by the status of my health; no, it was derailed by a different monster----the COVID--19 virus.  After enjoying our sightseeing activities for about four days, the news was beginning to scare us as we watched the virus grow to alarming numbers in Italy and then into the U.S.  Our extended family members and friends were calling and texting us hoping we would start making plane arrangements to return home.  We were kind of in our own little "happy place" trying to ignore the impending reality.

One activity we chose in addition to visiting the beaches and walking up and down the beautiful coast lines was to hop on some bicycles and ride.  Now for most people that might not sound like a big deal, but for Michael and me, it was a big deal.  We hadn't ridden bikes in YEARS.  The boys thought it might be fun, but we thought "fun" might turn dangerous for us rather quickly.  My balance and coordination are certainly not what they used to be for several reasons, but we wanted to go along with the gang.  To make matters even more "fun", we decided to rent a tandem bicycle and go for it! We all never laughed so hard while trying to ride without crashing until we got the hang of it.  The path along the beach was used for bicycles, walkers, runners, skateboarders, and strollers of all shapes and sizes.    Mike and I thought for sure we would plow right into people or take down a little doggie oblivious to our craziness.  It was a true miracle we did not.  However, those two hours brought us joy and silly laughter which are sustaining us now during these bleak times. 

The very next day we decided to catch early flights home and face the grave reality of the situation.  This all seems too much to even comprehend some days.  While we pray for healing and mourn with others who are enduring unspeakable grief, it is well for our soul to hold onto wonderful memories that lift our spirits, even for brief moments. 

While we walk along this uncertain and scary path day in and day out with one another, let us hold onto hope that things will eventually turn around for the better.  The Light will shine after the darkness.  God never abandons us.  He is always with us. 

Remember, this is the time to be extra gentle with ourselves and others right now.  People's emotions are all over the place, and we aren't here to fix or solve them.  Emotions are what they are.  Right or wrong has nothing to do with it.  Being honest about what we feel will hopefully help others do the same. 

In the days ahead, go through your photos and letters and cards and find some memories that make you smile and laugh.  It will do you a world of good.  Feeling good is allowed even in the midst of this grave crisis.  It does not diminish someone else's suffering.  Instead, it gives us a chance to share some lightheartedness with those around us as we blindly stumble along this stony path.

 Praying for the end to this virus and SOON. 

Into the desert

Ash Wednesday begins the penitential season of Lent.  Every year it sneaks up so quickly that admittedly, it catches me off guard.  However, Lent is actually my absolute favorite liturgical season of all.  I know this may seem odd, but it is the truth.

Preparation, patience, and penance help me to seek a deeper relationship with God. 

I prepare my heart for the Resurrection by delving into God's Word more regularly and with a deeper focus on a daily basis.  It is not how long or how much I read.  It is the interior reflection of how God speaks to me.  In addition to prayer and reading God's Word, I will partake in penance, fasting and almsgiving.

I try my best to be more patient with others, but first I need to allow space to sit with my own negative thoughts and intolerances and give them to the Lord so as to become more patient with myself. 

I have forty days to offer up private acts of penance as well as go to the sacrament of Reconciliation and receive forgiveness and penance.  It does well for my soul to be clean and fresh for the Easter celebration. 

This season is my favorite because it is so rich in soul searching while taking on a posture of humility.  The forty days set aside can seem so very long to be disciplined in carrying a cross, but it connects us so deeply with Jesus and His long time in the desert. 

Lent should "feel" different than other seasons.  The yearning for the Alleluias to return in church as well the Glorias give us pause.  Waiting and listening quietly for God's loving voice to be spoken into our hearts helps us move with more intent and purpose. 

These are a few of my thoughts.  If you wish to share your feelings and or practices about Lent, please comment on my blog. 

I wish everyone a holy time in the desert. 

Walking in wellness

Now that we are several weeks into the new year, this is usually the time I take a closer look at how I am doing in relation to my intentions that I set for myself at the beginning of this year.  In my previous blog I mentioned practicing "soulutions" instead of resolutions that might provide a more purposeful perspective to managing daily life.

To be honest, I feel like I am just now stepping into 2020 with my sneakers on ready to walk in wellness instead of crawling through the chaos of chronic illness. In addition to the normal struggle of my M head, any sickness on top of that really can wreak havoc to my system.  For three weeks around the holidays, our house was cursed with several variations of the nasty respiratory virus that was "going around."   One by one family members dropped quickly.  It was the gift that kept giving for sure.  However, we all managed together and that seemed to lessen the burden overall.  We still had plenty of fun playing games amidst the coughs and sniffles!

One of my intentions is to shift my perspective in how I manage the daily-ness of chronic M.  Instead of concentrating on my limitations and feeling the weight of the multitude of medication side effects, I hope to focus more on the progress I am making in reaching the tiniest of goals in my healthy choices.  This feels so much better and offers me hope and encouragement to keep going. 

A positive attitude and a perky perspective are not to be confused with making light of coping with M disease.  Many people who live with invisible illnesses and deep, hurtful wounds can sometimes feel like their experiences are not validated. This is not helpful.  Just because they seem fine in outward appearances doesn't mean all is well and good.  Being truthful about how hard the journey can be at times is the best way to educate others speaking from a place of authenticity.

Can you think of any times a shift in perspective might help you handle a situation better?  Maybe it is a relationship that needs improving or a nagging health issue or a work situation that seems overwhelming.  Sometimes all you need is a little boost to get going in the right direction.  That little boost can be refreshing in body, mind, and spirit.

I found this little exercise very helpful, and I offer it to you.  May your days be filled with gratitude and joy in this new year. 

Soulutions for the new year

The New Year is upon us as well as a new decade!  I have taken time to ponder and reflect not only the past year but also the past ten years.   I imagine you have done the same to some extent.  Reviewing the past carefully and intentionally certainly lends a colorful perspective to the present landscape.

For me, I stepped into 2010 with energy, goals to obtain, and a faith filled with hope.  My sons were at different stages finishing high school and preparing for college, so I was preparing for our home environment to change.  Middle age was staring me in the face, and I was trying to figure out how to respond to this new phase of life.  I knew I wanted to get my body stronger physically, emotionally, and spiritually.

My days were starting to get filled with activities that suited "my plans".  I felt in control and definitely driving in the driver's seat.  My days were fulfilling because I was in the "doing" mode.  Many volunteer opportunities awaited me, and I was excited to jump aboard and get involved.   Little did I know that those plans were soon to change.

The beginning of 2010 met me with a huge dropping of the ball but not of the beautiful, glitzy New York city kind.   By mid January, I actually did not know what ball hit me.   It turned out that ball did have a name----viral meningitis and shingles.  It flattened me in no time and I was in the hospital before I really knew what the heck was happening.  Suffice to say that "my plans" certainly changed.

For the next decade I climbed mountains, ran marathons, swam in stormy waters, and rode every sickening, fast roller coaster known to man.  I did these activities day after day after day as I traversed the journey of chronic migraine.  I lived through the high of the highs and the low of the lows never imagining the darkness could be so dark.  But.it.was.

Now stepping into this new decade, I am wiser, stronger, confident, and more compassionate for those who suffer.  My faith has grown deeper and God has saved me from myself.  My gratitude runs deep and wide for every blessing.  Lessons are still being learned, and I now know how to live a full life regardless if I am "doing" or "being".   Life is good even with my chronic illness.  It took me almost ten years to embrace this.

So here it is 2020 .   I am once again going to live out  Soulutions instead of resolutions.  This was created by Ann Voskamp, author and speaker.   Here is an example if you wish to do the same.   Think on the word and then fill in the blanks.  It is a meaningful exercise that is directed toward your soul.

Once again, thank you everyone who has and still is loving me and helping me on my journey!!  May this new year be full of happiness and blessings to you!

                                   I PURPOSE TO

Embrace---------
Engage-----------
Be----------------
Believe----------
Break------------
Daily------------
Do---------------
Let Go----------
Learn------------
Live-------------
Give-------------
Grow------------