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"!!

1 comment:

  1. Lisa,
    I never cease to be amazed at the tenacity behind your testimony. I rejoice that God is giving you the strength to keep putting one foot in front of the other and I pray that will give others, who suffer similarly, hope. There several illnesses that carry a stigma by society that just says "get over it already". Stigmas are based on ignorance. As a sufferer of mental illness, I know that feeling of I may look okay on the outside but step inside my brain...I will certainly pray this month that awareness would be raised - you have certainly raised mine. May your course of treatment bring you relief!!
    Blessings and ((hugs)) sweet friend,
    Bev xo