Summertime fun

My friends, I hope by mid July you are all seeking and finding some summertime fun into your lives.  It is so important for the body, mind, and spirit to lighten up a bit and partake of what the season of summer has to offer.  Yes, the days can be long and hot and tiring, but somewhere in the midst of all of that, there is fun to be had.   Maybe you are carving out special time for family vacations or just some lazy days off (when schedules permit) to just BE.  Hopefully, a combination of both would be fulfilling.  

For me, I have always enjoyed summer.  As a kid, I loved the long days of hanging out with girlfriends and heading to our local community pool.  There was always something to do or somewhere to go to keep us entertained in ways that were very simple and meaningful.  I also enjoyed a lot of quiet time just reading or listening to my music or playing the piano.  As I grew older, I worked but still found time to immerse myself in the richness of the summer season.  

As time marched on and we grew our own family, summertime took on different phases, so to speak.  Having little ones under toe all the time, the long, hot days were a challenge in some aspects.  It took forever to get everyone rounded up and ready for the day ahead as we set off on many adventures.  I went with girlfriends and their children to parks, children museums, beaches, and indoor play areas for needed reprieve.  We also spent fun times at each other's houses in the pools, sprinklers, and getting drenched from the water gun fights.   We ate loads of yummy Popsicles and simple picnic foods.  The mommies bonded and shared life with kids under foot while the daddies toiled at the workplace.  Sound "traditional"?  Yes, it was.   Life was great.  

Just recently as our family (now 4 grown young men) sat around our dinner table, we talked about the memories of past summers.  The boys each shared some of their favorite memories, and my heart was overjoyed.  They were saying how happy those times were and how thankful for the opportunities which we provided.   WOW.   Mommy had to take a deep breath and savor that moment.   Sometimes, it seems to be the smallest of things that can make a large impact on our soul. 

Currently, my days of summertime fun are hit and miss at best.  I can no longer tolerate sunny days at the beach or a lake.  I have to walk quickly in early morning and then hopefully have a longer stroll on our local Boardwalk in the evening.  I have to stay inside and cool which can make me feel a bit ansie. 

The summer weather patterns are huge M triggers for me which are totally out of my control.   Packing up and going anywhere is a bigger deal for my needs than packing up four young toddlers back in the days!  Lol!  Well, it is what it is, and I do the best I can.  I will continue to set my intentions to focus on the positive and let go of unnecessary expectations.

Just this past week, I found my happy place being surrounded by my four young adult sons who happened to be home here all at once.  Yay!!!  We had a really treasured week together.  It was kind of challenging for me as I was not up for all of the activities due to my continual and most annoying uninvited guest, but I finally threw him out the back door!   Overall, our family shared many laughs and crazy moments that were sacred silly.  Praise God.  

May you find silliness, stillness, and peace during the rest of this summer season. 

Encouragement---Could you use a little of this today?

"Blessed be the God and Christ, the father of compassion and God of all encouragement, who encourages us in every affliction, so that we may be able to encourage those who are in any affliction with the encouragement with which we ourselves are encouraged by God."    2 Corinthians 1:3-4

I know most days I sure can use some encouragement.  I read God's Word and find it there.  I then feel inspired to offer it back out into my little world.  Let's face it, we ALL could use a little no matter what season of life in which we find ourselves.  Some days and moments are harder than others depending on what we are currently walking through, so a little bit of kindness and encouragement really go a LONG way.  

This past week was a particularly difficult for me in a number of different ways.  Mostly, I was physically side-lined due to my chronic M symptoms, and I grew weary and exhausted from the daily-ness of it all. I had "plans" and life to attend to, darn it!  But, none of it was happening in "my way" at all.  Not.One.Bit.  

However, I sure received some absolutely refreshing gifts of encouragement from family, friends, and places that were God's continual show of His love and mercy and grace for me.  They were all a salve unto my tired and painful body and soul.  I received uplifting text messages and songs from dear hearts who accompany me on this journey as well as smiles, gentle hugs, meals made, errands run, and sons who retrieve my ginger-ale and ice packs!  Many of my prayer warriors were attentive in offering their blessings and prayers.  

I must give a particular shout out to my new headache specialist, Dr. Grosberg.  As I stated before in a past post, he is simply an amazing doctor but more importantly, his kind-heart speaks volumes of his character.  He told me that he "has my back" and not to worry as he will help my through this journey.  He even went as far to say, "thank you for letting me take care of you."  W.H.A.T.??  Did I hear him correctly?  Oh yes I did.  After I thanked him profusely for his care, he said those kind words to me at least three times at the visit.   Let me tell you, I was reduced to tears right then and there.  My hubby was quite full of emotion as well---shhhh, don't tell anyone. :)

There is always, always, always something to be thankful for even in the midst of our hardest times.  

As I receive kindness, love, and encouragement, it is my honor to offer the same to others in need.  My prayer is that God will always place before me who might need it in a special way each day.  It doesn't take long to receive a clear answer from the Holy Spirit.  That is what gives me purpose to my day.  

I invite you, my friends, to think of at least one offering of encouragement you can send out into this hurting world of ours.  Each day is a new opportunity to shine our light of hope.  

May you all have a most blessed day!!  

    Beautiful flowers from my neighbor's garden 

    Pretty encouragement!

A season of unsettled-ness

"To everything there is a season, a time for every purpose under heaven."  (Ecclesiastes 3:1)

I am pleased to share that I am crossing over into a new season, one of which for now, seems to be a season of light and soul refreshment.  I am ever so slowly coming up for air and moving on in my life of new normals.  I don't feel as stuck or angry or fearful as I emerge from my darkness.  I am finally "exhaling" and relaxing while leaning into God's amazing grace.  I still from time to time wrestle with Him when I become overwhelmed, but I know that the wrestling means I am embracing His mercy and love all the more.  

This new season of which I am finding myself is one I call, unsettled-ness.  Quite simply, my body and emotions are feeling somewhat strange and unsettled.  In addition to the usual, daily management of living with chronic M and all which that entails, my family life continues to experience transitions as well.  

Some are major ones, some minor.   Life doesn't stand still while chronic illness takes a front seat.  My entire family is affected in some form---for better and for worse.  

Our young, adult sons are at various stages of independence which means they are still requiring guidance and nurturing---and possibly a home base with a bed and a fridge full of food!  Lol!  Changing jobs and residences and chasing new hopes and dreams all bring about unsettled-ness.  Hubby and I are empty-nesters one year and not the next. His work place is undergoing some major reorganization of which the outcome is not yet certain.   Our extended family members are plodding through some tough, uphill challenges of their own due to health issues and stage of life transitions.  More unsettled-ness.  

In this particular season, my family and I will learn new ways of adapting and growing together.  We will figure out how to best help one another.  Some days will be easier than others, but that is to be expected.  Participating fully in all that this season has to offer will be my focus.   There will be unexpected sorrows and joys and blessings along the way.   

And there is always Holy in the Hard.

And miracles in the mess. 

 

Treasuring my blessings

I will conclude my June blog posts about migraine/headache disorder awareness with a positive focus.  Often times, I get overwhelmed by the daily grind of dealing with chronic M which can be quite draining and depressing.  I will frame this post in a positive light to lift my spirits as well as share that even in our most difficult trials, we can look for many blessings.

Holding space for both the pain/suffering along with joy.  

Cherishing quality moments more than quantity with family and friends.

Continually being humbled by the outpouring of love, support, and concern for me and my people by so many kind-hearted individuals. 

Embracing the need for more solitude and silence in my days in order to fill with the presence and guidance of the Holy Spirit.  

     
Enjoying my slower pace of "being" rather than the busy rushing of "doing".   (This is a big transformation as I always thought my doing was of more value than being.)

Practicing patience with myself and others especially when I feel miserable, hurt, and alone.

Seeking the simple pleasures of each day and feeling thankful to experience them, like watching beautiful sunsets from the boardwalk, listening to the birds singing sweetly, and playing with our neighborhood cat who comes to visit me.  

Giving voice to my story through my personal journaling and blogging.

Pursuing a peaceful and prayerful presence each and everyday. 

Letting go of my noisy ego that shouts too loudly and instead learning to laugh more.  

Swallowing my pride and accepting help when I need it.  

Realizing that self-care and compassion are vital to my healing process and letting go of the guilt which may accompany it.  

Casting fear aside for a bit and trying new medical treatments while remaining positive.

Learning not to sweat the small stuff!  

Living in the present moment and breathing in its most sacred space.  

Believing that my suffering does have a redemptive purpose even if I can't see it.  

Opening my heart to a deeper sense of compassion for others who are in need and suffering. 

Desiring to jump in and "do the hard and messy" with someone else who is struggling.

Acknowledging and accepting life is full of more tough questions than neat and tidy answers. 

Learning to get out of my own way so that God can fill me up with His beautiful plan for my life. 

Last but not least, praying with conviction, fervor, and purpose because our awesome God is continually showing me the power of prayer.  

Thank you to my readers for sharing this journey with me and know that I am truly blessed by your constant encouragement, support, and love.  

I bet you already have experienced many of these same blessings but may not have reflected upon them.  Maybe you will soon allow yourself the opportunity to do so.  

Happy summer!!

       

   

More needles and more ouchies

Last week I ended my blog post just before heading out to receive my occipital and cervical nerve blocks. I am happy to report that the procedure went very well.  Yay!  I am always apprehensive and slightly sick to my stomach on treatment day.   I trust my new headache specialist, but I just secretly wish I didn't have to go through all of this "stuff" to feel better. However, I am blessed to finally have gained some significant progress in my long term management.  When I seemed to have reached my lowest, God stood me up and gave me His grace and strength to keep persevering along the unknown path. Mercy me, I am learning what true trust and surrender really feels like.  It is a daily, mindful practice for sure!

These occipital and cervical nerve blocks are generally given between the eight and ten week time span between the Botox treatments. They are supposed to hopefully bridge the gap until the twelve week Botox.   The medicine is a type of lidocaine to numb the areas where the headaches occur most frequently.  Sometimes the doctor will add a small amount of a steroid along  with the lidocaine.  This varies per doctor.  It isn't exactly "fun" to receive more needles, but at least it isn't as many as the thirty one or so for the Botox injections.  My forehead and neck get a bit red and lumpy but that doesn't last long.  Overall, what minor and temporary discomfort I experience is NOTHING compared to what I endure with days of awful migraine.   Hip hip hooray!   

So, with permission, my dear Dr. Grosberg posed for a pic with me for my blog.  He is excited when his patients help raise awareness for headache and migraine disorder.  He is AWESOME and God has blessed me abundantly for putting him in my path.  Truly!   He is a gentle and caring physician who seems brilliant and who is constantly doing research to find more effective treatment for this disease.  

Life is hard.

Life is messy.

Life is beautiful.     

Here is my beautiful for the week

Keep calm and wear purple

Since June is the month for Migraine and headache disorder awareness, I will be blogging mostly about my personal journey related to this topic.  It is my hope to impart some knowledge about what it is like to live with chronic migraine and try to separate facts from myths surrounding this disease.  The color purple has been designated as the color of awareness as it stands for HOPE for those of us suffering that someday more funding for research will be obtained and maybe even a cure for this debilitating disease.  As pink represents breast cancer, purple represents headache disorders.  So with that introduction, I will be   Staying calm and wearing purple!  

I am currently what is considered a chronic migraineur as I have more days with headache or migraine than not per month.   It is categorized as experiencing 15 or more days a month of headache or migraine.  Therefore,  the treatment for those living with chronic migraine is different from those who are episodic.  Episodic indicates that headache and or migraine technically occur less than 15 days a month.  Some people may only have one a year or some may experience 10 a month. The continuum      is wide indeed.  This is why a "one size fits all" treatment plan does not work.  

In my experience living with migraine since about the age of 40, I have transformed from an episodic migraineur to a chronic one.  This is due to several factors.  The BIG trigger being that I was diagnosed six years ago with viral meningitis and shingles.  This combination did a real number on my nervous system, and I have been dealing with the unfortunate consequences since.  I never knew or could have ever imagined the complexity of this disease and how it can totally take over one's normal day to day existence.   When I was episodic, it was much more easily managed and I mostly went on about my business.  Living with this chronic condition now, I am truly managing " a new normal" daily.  

As I have shared in my other blogs, my treatments are constantly changing and being tweaked as well as my doctor care.  I HIGHLY recommend anyone living with constant headaches and or migraines to see a headache specialist.  They are different from a general practioner or general neurologist.  They are specialized in all types of headache disorders of which there are many.  The treatments vary and it is important to obtain a proper diagnosis first and foremost.  If someone is chugging down OTC pain meds every day or every week, this needs special attention immediately.  

I am glad I have a month to share what I have learned along the way in my journey.  It has taken me six years of intense suffering to find my way through this complicated maze.  I feel I am now seeing the light at the end of a VERY dark tunnel and am really holding onto HOPE for lots more healing.  If I can hold onto that HOPE, I wish to offer it to others as well.  I pray for all of you.  

Yes, it is a disease, friends.  MIgraine is NOT just a headache!!!!!  It is a neurological disease which causes many neurological symptoms.  Pain is only one aspect of it.  Many people have lots of other symptoms other than pain and still suffer from migraine.  And yes---we can "look good" or even "look normal" but suffer greatly.  It is one of those invisible illnesses much like fibromyalgia, MS, Lyme disease, organ transplant recipients, and chronic pancreatitis just to name a few.  We keep pushing on and try to live our lives as fully as we can even though our day to day existence is quite challenged on all levels.   

I will end today on a positive note.  I am Embracing Grace so that I can embrace my new life now with new options and treatments and new ways of caring for myself well.  I am embracing the light that God always fills me with even though there are dark moments or even days.  

Today, I am soon off to my headache clinic to receive my 8 week cervical nerve blocks.  Yahoo!  Well, hopefully it will be a yahoo when I am finished.  Lol.  I will let you know how that procedure goes in my next post.  

I am ready!!  I am "staying calm and wearing my purple"!!

May---the month of more

May is usually a busy month filled with lots of activities of all shapes and sizes.  The momentum picks up after a slow, long Winter and a rainy, dull start to Spring.  I like to call it the month of "more".  

For example, more

Graduations----middle, high school, college, and graduate degrees

Weddings

First Holy Communions and Confirmations

Picnics

Proms

Memorial Day picnics and parades

Family and school reunions of all kinds

These celebrations really spice things up a bit and give us a fresh new outlook after the Winter blahs.  The days are longer and brighter which gives us more time to enjoy the beautiful nature which is coming into bloom.  More colors, more blossoms, and more allergies.  Oh well.  

As for me, my more consists of more days up and off the couch with a bit more energy and stamina and less debilitating migraine cycles of horrendous sickness.  I am starting to feel like I can participate more in my own life.  I am loving this to no end.  I feel more encouraged these past few months than I have felt in six years.  More botox, more nerve blocks, more needles, more doctor appointments, more meds, more strict management, more self-awareness, and more moving my body = a more fulfilling life as I navigate my new normal.  

Now as for more celebrations, I am all in!!  Bring them on!  

Just recently, we celebrated our son's college graduation.  It was a wonderful weekend full of festivities, and I was able to participate in the events even with adaptations and limitations.  I went into the weekend with MORE confidence and less anxiety.   

At the special Mass and fancy dinner banquet the night before graduation, I went prepared.  I try and cover all possible scenerios in my mind so as to have a good plan in place which can be exhausting in and of itself. The church Mass was in a gymnasium instead of the chapel due to the size of the crowd.  Well, that went beautifully, and I did not have to don my ear plugs or sunglasses.  I sat near the door so as to have an easy exit which turned out to be the best place for pictures!  Yay!   I was still feeling decent enough to stay a bit for the dinner.   My evenings are never long or else I dearly pay the consequences.  The dinner was a fancy one under a huge tent with a lovely ice sculpture and a huge buffet complete with blue lights and  A LOT of noise and loud music.  Uh oh.... Not so good.  I felt trouble brewing immediately.

After being seated at the large round table, number 94, I tried to calm myself and be fully present in the moment.  I was engaging in conversation (which consisted of yelling) to the other guests across the table.  We were going to be served our dinner late due to the number 94.  Great.   I started drinking ginger-ale and munching on bread.  Then, all of a sudden, the strobe lights got turned on and the DJ got louder and so did the music.  AGHHHH!!!  What the ??   So, there ended the fun for me---or so I thought.   I had to leave the tent with all of its no-no's for me and walk around outside and come up with another plan.  My family kept checking on me and bringing me snacks and drink.  My heart sank.  I felt like this was going to turn into one big mess.    

Talking about grace upon grace, God took perfect care of me like He always does.  AMEN.  My family talked with the manager of the event and asked if anything could be done regarding the strobe lights.  He was very kind and gracious enough to have them turned off at least during dinner so that I could sit and eat with everyone and not have to leave.  What a relief!!  We all enjoyed our dinner hour and then left before the dancing and the strobe lights began again.   My son stayed and had fun with his friends, and we got home in time for a good night's rest.  Life was good.  

The next big day was the graduation ceremony in a large sports arena.  Gulp.  Up early and on the road early with all of my goodies for the long day.  First mess up came when I wasn't allowed to bring my own food and drink into the arena.  I argued with the security guard but lost quickly, so my dear hubby spent about $40 just in water and soft pretzels for everyone.  Lol.  And per usual, the ladies room was full of air freshener but I held my breath well.  That trigger always "stinks"!

The crowd was awful and noisy and smelly.  But we were a happy bunch!  I found a good seat near an exit and put on my sunglasses and ear plugs and got out my tissues and absolutely enjoyed every single minute of the ceremony.  I was thrilled to be there and was confident that I was going to continue to manage whatever came my way that day.  And I did. 

We walked around campus for pictures, shopped at the bookstore, talked and laughed and met many people and then went to an early dinner.  Boy was I exhausted, but I made it back home in one piece.  It was a whirlwind weekend with more celebrating than I had experienced in quite a long time.

Now I am trying to recover from all the fun and MORE!  

This graduation weekend was another blessing in my year of YES! 

I will pray that you, my friends, will enjoy some of what this month of May might offer.  I hope it will provide good opportunities for JOY and MORE!