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!