Oh. Yes. We. Did.

I made up my mind at the end of Spring that I was going to continue to set new goals for myself which would challenge me to try new things that were sometimes out of my comfort zone.  Since Michael's retirement coincided with that particular timing, we were excited to start filling out our bucket lists, take each other's hands, and get going. 

While we both have completely separate lists, there are some adventures as well as projects we have in common which we plan on pursuing together.  I suppose "retirement life" will be one of dancing solo as well as the waltz without totally clobbering one another's toes in the process.  New dance routines are to be learned for sure.

This past Saturday was absolutely the most gorgeous summer day thus far.  Truly.  The temp was in the low eighties and sunny with a slight breeze.  Perfect morning for kayaking.  For at least six years, I have desired to get my body into a kayak and enjoy our beautiful surroundings.  This was another instance where my spirit deeply wanted to, but my body was unable which was an all too familiar scenario. 

However----the time finally arrived where I felt "good" enough to "plop" myself in the front of the kayak while hubby took his seat in the back where he was responsible for directing and steering our boat.  Actually getting IN and OUT of the kayak were the hardest parts! LOL!   I thought we were going to tip right over the edge right then and there. Both laughter and feeling a little ridiculous were all part of the fun that made our experience richer.  Let's just say we weren't exactly graceful. 

Once we got ourselves situated, off we went paddling into the peaceful, summer morning.  Nature provided us with sights and sounds of the calm waters which filled our souls.  Seagulls and herons graced us with their presence.  We waved to other people who were also lucky to be out in their boats on that luscious morning.  I can't even describe the deep sense of gratitude I felt being fully in the present moment.  I honored the sacredness of my surroundings. 

 Michael and I paddled with ease on the calm waters, and I was surprised at my strength considering I am just now regaining some stamina ever so slowly.
Over these past years of struggling with chronic M, I feel I have largely paddled against the current which has been exhausting and overwhelming.  There were not many days of gliding on smooth water.  Saturday I reached a huge goal by stepping out of my comfort zone and physically paddled upstream, but this time it was much easier and a lot of fun.   My hero hubby was behind me all the way offering encouragement as always.   I thank God for him.

We look forward to more kayaking adventures this Fall.  My time spent doing the hard work of perseverance and holding onto hope while in the midst of some very dark moments is now paying off.  This is life.  With all of the many diverse challenges we face, the sweetness of the reward is so worth putting in the tough work to get there.  This, my friends, is the holy hard. 

Are we living the best life we have been given now by allowing our story to unfold to its fullest potential?  Everyone has a story to tell. It is what makes us who we are and how we interact with the world around us. 

My pathway to peace

For the past nine and a half years, I have been doing my best treading the tumultuous seas.  Although I am a beach gal in every sense of the word, I never thought I would find myself flailing about and gasping for air trying to figure out how I was to survive, let alone thrive with chronic M.  The journey has been long, but I am forever grateful of the life-giving lessons that I continue to learn.

I have gone from skipping along the shore while carefree dipping my toes in the water for some cool refreshment to being forcibly sucked under the waves that I never saw coming. Actually, I was never a good swimmer in the ocean; I really only liked to swim in chlorinated pools where I could see the bottom.
The waves were scary, and I tried my best to learn to tread with my head above water so that I could see and breathe.  Some days I was successful and others I was not.  There were times more often than not over the years that I just didn't know if I was ever going to arrive at a place of ease, calm and peace.

I remained hopeful, full of faith, and clinging to God's promises that He would always sustain me with enough grace for each day.  If I kept looking too far ahead with the "what ifs" then the seas became stormier and scarier.  Our Heavenly Father wanted to bring me to a place of peace in my soul living WITH this chronic illness. Peace was not dependent upon IF he healed me completely or not.

This peace that God gives is not the same as this world's peace.  It is far deeper, wider, richer, constant, and more beautiful than could ever be described.  It is like sweet music to the soul.  This past Sunday, a visiting missionary priest spoke about possessing God's peace first in our hearts so that we could then offer it to others.  "We can't give away what we don't have," he said.  This kind of peace is not felt only in good circumstances.  It dwells within our hearts ALL.THE.TIME.

My personal pathway to peace has been and still is a crazy, twisted, maddening, stormy journey of some pretty rough seas.  I admit I am still not a strong swimmer in the ocean, but I am sure as heck stronger than I was nine years ago.  For the first time in many years, I am surrendering my anxieties and fears about how I will continue to manage and navigate my chronic illness lifestyle.

 I am simply doing it by better caring for myself which is a good thing.  It is not selfish.  I wake up each day, give thanks to God for being alive, stretch my ole' body, assess my energy and or pain level, and then I go on with my duties.  I feel lighter and happier and am finding my way so much easier than I have in a very long time.   I no longer wish to fight the "M beast" anymore.  I wish to live well with him.

After my small get-a-way these past few weeks, I just sat in awe of how I was participating in many normal activities with family and friends without totally crumbling afterwards.  I skipped some naps! I ate with reckless abandon trigger foods! I celebrated my husband's surprise retirement party!  I took a few walks in the sun!  I stayed up past my bedtime!  I made it through 2 road trips without a M!   For these blessings, I am deeply thankful.  Embracing acceptance and gratitude for where I am on my journey leads me to freedom.  I feel as though I am entering a new season of grace-filled peace.

Friends, may the rest of your summer be safe, fun, and peaceful.  Go live it to the fullest with joy.

Purple with a Purpose

Anyone who knows me well can attest to the fact that I love the color purple.  This is obvious because I wear a lot of it, and the majority of my accessories are purple as well.   Several years ago I even decided to tint my hair purple for the cause which was fun, so I still carry on with that tradition today.  It usually sparks a conversation with complete strangers, so I never let an opportunity pass without some form of an explanation.

Since June is headache and migraine awareness month and purple is the color for this awareness, I really do wear purple with a purpose in mind.  Thank goodness I truly LOVE the color.  Many health awareness causes have a particular color associated with them, and even some have the same.   If I am not mistaken, Alzheimer's disease is purple as well.   Lyme disease is green.  Breast cancer is pink.  These are a few I know.

Before becoming ill with migraine disease nine years ago, I paid absolutely no attention to its awareness.  I had little knowledge about it except for the personal experience of watching my own mother suffer for years with debilitating headaches and other symptoms that took her out of commission for at least three days or more at a time.   I felt so sorry for her and helpless as to know what to do to relieve her suffering.  She was very brave and carried on teaching as much as possible.  What a mighty warrior she was! Thankfully her migraine attacks are under good control today.

Purple is also the color of HOPE.  This is appropriate for anyone suffering who feels terribly frustrated and even despair.  Migraineurs hold onto hope that more research will be done for continued breakthroughs with medicines and treatments that will help ease the pain of symptoms overall.

Fortunately, this year and last, there have been several new treatment options both with medications as well as some non-invasive devices to add to the list of tackling this monster.  Thank God for giving us more medical hope and positive advances for treatments.  This is very exciting! Of course, research needs funding, so by raising awareness, hopefully progress will continue. 

 I feel blessed that my headache specialist is both a brilliant physician who takes excellent care of his patients while being heavily involved in migraine research.  Working with him as a patient advocate on his clinical forums helps me feel like I am participating in a personal way to bring awareness and hope to others who are suffering in many ways.  I am grateful for these opportunities.

I guess the most important fact for the public to understand who do not live with this disease is that migraine is much MORE than a headache.   An excruciating headache may certainly be one, awful debilitating symptom, but it is not the only one.  Migraine is a neurological disease that affects one's neurological system in a variety of ways---- nausea, vomiting, light and sound sensitivity, auras, sickness from odors, crushing fatigue, and so on. Since people's symptoms can range from random (episodic) to chronic, and there is not a one size fits all treatment plan.  People have to try many medication options for months to see if any of them will work, and then they have to weigh the benefits of how much the medication helps versus how the side effects are or are not tolerated.  This is not easy, believe me.  It is all very complicated.

Every June I asses my own journey and take a peek at how far I have come in dealing with this disease.  Each year I am finding improvement with how I manage and cope day to day.  For me it is a 24/7 "job" in many ways.  I have learned over the years to stop fighting it and accept what my body can or cannot do----my "new normal" as I call it which I have written about before.  There are many triggers which can bring on an attack.  Some triggers I can control, but some I cannot.  I am continually learning about these as well.

While I could write a thesis on this subject, I will spare you. If you have read this far, I commend you.   Please know that my spirit wants to "do" a lot of fun things---like taking walks, meeting for coffee or lunch, attending a special event, traveling, and even chatting on the phone.  Sometimes these things are too taxing on my body which requires quiet and rest at certain times.  In order for me to refill my energy again, I must take time for me. 

June 21, the summer solstice, is Shades for Migraine day.  It is a day when all migraineurs wear their shades indoor and outdoor to bring attention to this disease.  It is also a time when those who don't suffer but who know someone who does to wear their shades in solidarity!  Preferably purple shades but any purple attire will do as well as any shades would be great.

Shades for migraine supporters will appear on the Today show June 21 as well as the big lit up sign on Times Square will show pictures of people who live with migraine disease.  However, I will not be in NYC this year.   I dare say migraine awareness is receiving more attention this year than before.

I will continue to embrace my purple lifestyle with a proud purpose of informing others about migraine disease and what it is like to live with chronic migraine.  While there is NO cure as of yet, there is wonderful research on the horizon that offers hope and encouragement.

If you know someone who suffers who may be a friend or coworker, please don't suggest a million "cures" they should try-----like what to eat (or not ) or what to drink (or not) and especially don't push 2 Advil their way and tell them to sleep it off. These so-called cures are actually demeaning and hurtful because they don't validate the reality of their suffering. 

Knowing what I do now I wish I could have had that knowledge years ago. My suffering may not have been so scary and deep.  My journey has been a long and winding road but one that has taught me wisdom and fortitude and compassion.  I am more than happy to assist anyone to survive this challenge, so if you know someone who could use some help, please direct them my way.  I am on FB and IG .   email is momofsdnp@sbcglobal.net 

Happy summer solstice!

 




















                                                 

New horizons around the corner

We are jumping into May, and I am asking myself where April has gone?  As I get older, I seem to question time frames more and more. Where did all the years go when our family planned Easter egg hunts, dyeing eggs, and making Spring crafts? Certain traditions remained sacred all through the years as our kids grew.  I am also reminded of the times we wrestled our four sons into dressy Easter fashions that turned out to be a tug-of-war early on Easter morning before church.  That was fun! NOT!  We have old video tapes to prove the craziness.

The month of May brings birthdays, end of the year school concerts and sports, award ceremonies, field trips, and graduations of all sorts. This is the first May in many years that we are not celebrating in any of those familiar ways.  Our sons are grown and out into the world working and/or in grad school.  Once again, Michael and I look at each other and ask, "Where has the time gone?"  Last year was our big family trip to Texas for Patrick's college graduation from UT Austin which was quite an eventful adventure! It was joyful yet a tad bittersweet for good ole' mom and dad.

So for fun we thought we might just start making new memories for the two of us.  My sweet hubby will be retiring from his long career from Pfizer.  The end of May Michael will walk out of his research building for the last time in 28 years.   As the day grows closer, it all seems surreal.

After much prayer and discernment, we felt the Lord was guiding us to make this decision now.  Timing seemed to be just right.

For the past eight years I have barely lived life off the couch because of chronic migraine.  Now that my treatment plan helps me manage and function somewhat better overall, we are eager to set out upon some exciting adventures.  We have people to see, places to go, and new horizons to explore.

"Exciting" may look very different for us than other thrill seekers in their retirement, but we will do what is best for us.  We certainly have some plans up our sleeves and are looking forward to getting started. God has strengthened us by His grace over these past difficult years. We are once again feeling full of hope stepping out and marching forward with confidence instead of feeling pulled back by fear.

Friends and acquaintances immediately question Michael what he will "do" in retirement.  He is too young to retire apparently.  LOL.  Our society is focused on an individual's worth by what someone "does." People are defined by their professions (or the company ID badge they were around their neck).   I guess people think that if Michael doesn't have his job to walk into daily anymore than how on earth will he fill in the hours of his day?  Listen, we have enough house projects that need tending since many have been put aside for years---and he won't need an ID badge to do it!  His "honey to do" list is growing longer by the day.  On the rainy days inside, there will be no lack of doing; that is for sure.

We might not scale Mt Everest or jump out of planes or zip line in a remote jungle somewhere, but we are looking forward to much more walking and kayaking to keep ourselves moving and enjoying nature.  Having the opportunity to embrace spontaneity on days when I feel up to it will be a dream.   Michael needs time to exhale and give his body, mind, and spirit space to breathe.

We hope to be intentional about making time for intimate gatherings with family and friends around our table for conversation and connection.  This is important to us. Opening our hearts and home is how we feel blessed and, in turn, how we can bless others.  Please come visit us!  We would be honored!

New horizons and adventures are just around our corner...

Maundy Thursday

"If I then, your Lord and Teacher, have washed your feet, you also ought to wash one another's feet.  For I have given you an example, that you should also do just as I have done to you."
                 John 13:14-15

I was humbled last evening at our Maundy Thursday service to have my foot washed.  The choir softly sang while twelve of us participated in the foot washing.  I found myself moved to tears.  It is a gentle reminder to go and serve others' needs as best I can.  As Jesus did, I wish to do also. 

 Today is Good Friday. 
 Today I follow Jesus in his Passion.
 Today I mourn at the tomb.
 Today I will enter into silence, prayer, and reflection with a heavy heart 
 knowing that Jesus brutally suffered and died for all my sins.
 Today I know that by His wounds, I am healed.
 Today I also know that by His unending mercy and grace, I am saved.

                                                 

Spring Awakening

April has arrived, and I come more alive with its presence.  The rhythm and flow of the seasons of the year mark the beautiful life cycle that happens over and over again.  God in his omnipotence creates all things into being and does so in very mysterious ways.  I am in awe of His handiwork and pray I never take any of it for granted, and I do my best to live in gratitude for all of His blessings.

After hibernating for the long Winter months, (I feel like a bear sometimes) I start looking for all the signs of Spring which nature emanates so delicately.  Depending upon where one lives, Spring awakening happens at different times and in different ways in order to be noticed.

Since I live in New England, I admit I get a "tad" bit impatient for warmer days with less harsh chills and winds.  One day I bundle up in my winter coat, hat, scarf, and gloves while other days I can don just a sweater perhaps.  It is the crazy, unsettled ups and downs that I try and prepare myself for each year.

The fun part is to closely examine nature right around my house and find sweet surprises of buds popping up from the dark earth where they have been growing silently for months.

            "For behold, the winter is past; the rain is over and gone.  The flowers
             appear on the earth, the time of singing has come, and the voice of the
             turtledove is heard in our land."   
                                                               Song of Solomon 2:11-12



No matter our messy and often confusing circumstances, Spring brings refreshing perspectives filled with hope and courage to take the next steps in moving forward.  If flowers and trees can blossom beautifully in the mud and thick debris of Winter, then we can do so as well.

Let us participate actively in our own Spring awakening and see how our rebirth unfolds.  Our personal stories matter.   Always.  Maybe it is time to share some of our stories to offer hope and compassion to others. 

Happy Spring! 

From botox to ashes

Preparing for a morning appointment at the headache clinic, I mentally and physically give myself a pep talk before my botox procedure.  I am used to all the needles by now( since this is 3 1/2 years and counting), but sometimes I wonder how long in the future I will have to keep receiving this treatment in addition to all my other medications and supplements.  I am a walking pharmacy, but I know I am in good company with many others, unfortunately. It is what it is for now, and I try to accept this journey with grace and gratitude. 

 My mind sometimes wonders if botox and/or my current meds will wear off all together and no longer be helpful.  I try and stay in my "positive zone," but sometimes I slip and allow a bit of fear and anxiety to have the stronger voice.  That worrisome voice can ride in the car with me, but I am in the driver's seat.  No bending this rule!

My appointment went well as did the procedure largely due to the fact that my headache specialist is so kind and gentle.  He puts me at ease and keeps me focused on my treatment regimen which is better than it has been in years.  I am honest with him about my feelings, and he LISTENS.  How grateful I am from the bottom of my heart for his care. 

While Michael and I were having a bite to eat before we headed home, we talked about having botox on Ash Wednesday.  I wanted to feel well enough to attend Mass later that evening to receive the Eucharist and ashes.  Sometimes I feel crummy and in pain following the procedure, so I wasn't sure if I would make it to church.  The thought came to me about receiving both botox and ashes and how they were signs of hope. Botox was my physical sign of hope given in the form of needles and medicine.  Ashes were a sign of hope offered to me to begin my spiritual discipline of Lent.  On one hand they seemed like an unlikely pair, but for my story, they were perfect. 

Michael and I shared some special time together like we always do on the days of my treatments and talked about our Lenten journeys both individually and as a couple.  Over hot coffee and a bite to eat, I remind him that he is my rock and strength. 

 My botox and ashes were a good way to begin this Holy Season of deeper prayer, gratitude, and penance.