Monday, June 27, 2016

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. 


Saturday, June 18, 2016

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!!


Wednesday, June 8, 2016

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

Wednesday, June 1, 2016

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"!!