Sunday, September 30, 2012

Don't ever let them see you sweat!

The beauty of having an invisible illness is you can fool all the people all of the time instead of just some of the time.  Of course there are those little cues that may give you away, but most people aren't that observant.  I was able to fool people for 15 years and during that time I was able to put money away for retirement and get the Masters degree I always wanted.  I wasn't able to work full time and go to classes too so I found a great online university that gave me the flexibility I needed to take care of myself and continue to work.  Those were really hard years, but it was worth it.  Because of those years I know exactly what I'm made of.  I ultimately had to retire early, but life is still good for me.  I roll with the punches and I never let anyone see me sweat.  My strong will and determination have served me well and gotten me through many life miles and I'm not ready to be put out to pasture just yet.  Sure I have limitations, but I don't make that my focus and I just work with it throughout each day.

We can't wait until everyone understands us and our fibromyalgia.  We need to keep moving forward and living our lives.  I work every day to educate others about fibromyalgia, but this is a crusade of patience and persistence.  When I was first injured 19 years ago I was in severe pain.  I decided to learn more about chronic pain so I bought a book.  I don't recall the name of that book and I don't even recall much about that book.  My take away from reading that book was inspite of your pain, don't make faces.  That was an ah-ha moment for me.  No one wanted to see me focusing on my pain

Saturday, September 29, 2012

Hey, where's the joy??

I look for little snipets of joy all the time.  Joy is such an integral part of quality of life and if you don't have quality of life, what's the point?  You know, every day is a good day, but some days are harder than others.  The harder the day becomes the harder I look for the joy.  It's like being a sleuth gathering clues in search of an elusive prize.  The more elusive joy becomes the more determined I become to find it.  Not having joy in my day is not an option.  I have constructed a mental list of reliable joy sanctuaries so I am able to get my dose of joy any time I need it.  When all else fails and the trail becomes temporarily lost, I am comforted by the knowledge that joy can be found in obscure places; places that others may not recognize.  To find joy you must be highly observant and intuitive and be receptive to the clues all around you.  If you wait for joy to be delivered to you in a neat little package you will fail to recognize joy when you see it.  Joy presents itself differently wherever you

Friday, September 28, 2012

What day changed your life forever?

That's a question that brings to mind so many life events and generates a thoughtful life review.  Each and every significant life event has had an impact on me and gave me the opportunity to change who I am.  The decisions I have made when each significant opportunity presented itself were based on a choice for positive beneficial change or negative change that would lead to a dead end and stagnation.  I have always chosen to look at the positive side of any life event so I would be able to continue moving forward and to learn valuable life lessons.  When pondering this question, initially I automatically chose the day I was injured because that is the day when my mind and body were set up for fibromyalgia.  This illness certainly has had a monumental impact on my life and has changed my life forever, but I can't say that day would be the one I would choose. The day my daughter was born changed my life forever and I metamorphasized into a different person as a result of having mothered a child.  But I still wouldn't choose that day as the single most significant day in my life.  After all, children leave home and go their own way, as they should, so the ultimate impact she has on my life today is less than when I was actively raising her.  There have been many other life changes:  divorce, a move from Illinois to Indiana to Minnesota to California, relationships that have come and gone, relationships that have stood the test of time, the loss of my father, the aging of my 88 year old mother, job changes, retirement, getting my college degree and completing my Masters degree, so many other changes that have occured through the years too numerous to mention.  But there is one single event that changed my life forever and has been an inspiration and reminder of

Monday, September 24, 2012

Change is inevitable . . . fear and anxiety are optional

If there is anything I know for sure it's the reality that change is inevitable.  We live in a dynamic world that keeps changing at an ever faster pace.  Our own bodies are dynamic and change throughout the day; some of those changes are visible as decades go by.  We also feel the change in our bodies, especially when a chronic illness comes knocking.  As people age there is a tendency to feel more vulnerable, which is frequently expressed with fear, anxiety and depression.  People that suffer from a chronic illness are also prone to developing fear, anxiety and depression, and people with fibromyalgia are no exception.  Living with those feelings of vulnerability and the accompanying fears are difficult to cope with every day and can be debilitating.

I have experienced these emotions throughout the decades of my life during times of significant change.  Those times gave me an opportunity to examine my own perceptions about the events that had immersed me in a dark and scary place.  But I have learned that if I don't like a situation I have three choices:  I can either accept the situation as it is, I can alter or change my participation in the situation or I can change my perception of the situation.  That is the only control I have in the whole world; control over myself.

When I think of all the changes in my life it is apparent to me that many of those changes orignally presented themselves as a larger than life negative challenge.  Most of the life challenges and changes

Thursday, September 20, 2012

The new paradigm is not set in stone!


by: Charles R. Swindoll

The longer I live, the more I realize the impact of attitude on life.

Attitude, to me, is more important than facts. It is more important than the past, than education, than money, than circumstances, than failures, than successes, than what other people think or say or do. It is more important than appearance, giftedness or skill. It will make or break a company... a church... a home.

The remarkable thing is we have a choice every day regarding the attitude we will embrace for that day. We cannot change our past... we cannot change the fact that people will act in a certain way. We cannot change the inevitable. The only thing we can do is play on the one string we have, and that is our attitude... I am convinced that life is 10% what happens to me and 90% how I react to it.And so it is with you... we are in charge of our attitudes.

 What is your new paradigm?  How has that new paradigm interfered with your original life plan and are you willing to let go of that plan if it is no longer attainable or relevant?   Life certainly is a mystery and a contest at times too.  Just about the time I think I have some insight about my life's direction and what the future may hold something happens to change "the plan".  Is that built into life so we remain resiliant and flexible in our response?  When I stop to think about the people I know and whether they are just barely

Sunday, September 16, 2012

Dance to the music . . . and sing

 My good friend, Lori, reminded me of the therapeutic benefits that music has in reducing stress levels, reducing pain, enhancing our immune system, and improving our well being overall.  Research has shown that listening to Mozart three times a week can reduce the risk of heart disease and Mozart has also been linked with enhancing learning.  Making your own music is especially beneficial, because creating rhythm can extend pain fighting benefits by increasing relaxation, reducing loneliness, providing an emotional release and enhancing a spiritual connection.  (  Much of what is known regarding music's healing effects remains anecdotal, but when you are in pain, and your energy and spirits are low, your choice of soothing music will help you feel better.  I'm sure you won't particularly care if science has proven the benefits or not.  I don't think beating out a rhythm on a drum would be a good choice if you are already pounding out a rhythm with a headache.  You may want to choose a kinder and gentler tune for that moment in time.  But the beating of a

Saturday, September 15, 2012

The making of a better day

When I awakened this morning I was greeted with a familiar and yet unwelcomed cephalic pressure and a rhythmic pain in my head that felt as though it was mimicking a persistent lunar tide.  As each wave of pain rolled over my head and crashed into my face I wondered what the origin of this now daily battering could be.  I dutifully reviewed the many possibilities with great tedium.  Had I slept wrong?  What a silly question to entertain.  The tension in my shoulders nagged at me, but was this the cause or the complication?  So was this just related to the stress of the day before?  I had spent nine hours in the hospital while Sid had a heart ablation procedure.  I recall my feeling of calm and patience as I waited all day as first his procedure was delayed by two and a half hours and then the arduous task of waiting through the procedure and recovery period.  By the time Sid was settled into the intensive care room for the night I was feeling the tension of the day as exhaustion overcame me.  Why did I think for a minute that I was really so calm and patient?  It

Monday, September 10, 2012

The power of intention

Have you ever noticed that your day goes as well as you intend?  Your intention is your determination to act in a certain way.  Your brain is a barmoneter that can be set for any time period (an hour, a day, a week, a month) to be data specific sensitive.  The time period your brain may choose to focus on a particular data set is infinite in either direction.  That time period can be a fleeting moment when you barely notice something in your day or it can become ruminative and last a lifetime.   Data specific sensitivity can be established for any data set you wish to collect throughout your day or your life.  The data you wish to collect and measure may be related to pain.  How many times have I been in pain today, how bad was each episode for each body part and how does that compare to every day this week or month or year?  Or you may wish to focus on data about the weather.  How cloudy was it today, was the storm worse than yesterday's, was the temperature too

Friday, September 7, 2012

Reviving a battered spirit

I have talked with others that suffer with fibromyalgia and I frequently find that these gentle, sensitive souls have been emotionally battered and bruised over the course of their illness.  I have been thinking about the many challenges that we must overcome and the tremendous toll that these difficult challenges can have over time.  I imagine that you, a person struggling with the challenges of chronic fibromyalgia, have endured many losses and harsh criticisms over the years.  Those losses in combination with the harsh criticisms of others, including family members and healthcare professionals, during the most vulnerable time of your life have most likely eroded your spirit and self esteem.  The grief and loss of losing your previously robust brain and body can be overwhelming as you struggle to maintain your identity and dignity.  At a time when you need a solid, supportive partner the most, is when none may exist or your partner may have taken flight and filed for divorce.  Friends frequently have difficulty understanding your limitations brought on by fibromyalgia and may make unkind remarks that further erodes your already battered spirit.  Those friends frequently disappear over time.  A fading support system coupled with the stuggle of searching for treatment where no definitive treatment currently exists, creates another layer of stressors and feelings of

Tuesday, September 4, 2012

Preserving and celebrating your authentic self

This life journey that we travel is such an interesting path.  We all start with our own roadmap that is unique to each of us and we have the ability to make changes in that roadmap as we learn and discover who we are and where we want to go.  There are so many opportunities that present themselves to each of us every day and the choices we make and the way we think shape who we are.  I have always thought if everyone was just like me what a terribly boring place the earth would be.  It is the richness in diversity of thought that truly makes each of us different from one another.  Throughout my life journey there are certain aspects of myself that have not changed and that is the core of my being.  That core of my being represents who I really am and is the foundation for my authentic self.  As I have grown older and embraced all the experiences that life has placed before me, I have learned to appreciate the unexpected detours in my roadmap.  These detours have always caught me off guard and have been some of life's most challenging moments.  As I ponder those challenging life moments I realize it is these unexpected detours that have given me opportunities to discover my authentic self.  Without life's challenges how would we really know who we are and what we are made of?

From the time I was in my 20's, which was the 1970's, I have pondered the wisdom that stereotypes are a bad thing.  When I consider stereotypes I do believe that making statements that categorize people can be damaging in the context that this is who they are rather than a component of a whole.  Stereotypes is the brain's method of creating categories in order to organize an otherwise chaotic

Saturday, September 1, 2012

The spirit and face of a Warrior

When I see or hear the word warrior there are many images that come to mind.  I think about the great Mongolian warrior, Ghengis Kahn.  He was one of history's great leaders and he conquered most of Eurasia during the thirteenth century.  The Macedonian, Alexander the Great, is thought to be the greatest warrior the world has ever known.  He was a master of tactics, strategy, statecraft, and logistics .  Napoleon forged the finest army of a generation with his application of war principles, which resulted in a rennaissance in military doctrine, are still in practice today.  Frederick the Great, Julius Caesar, Gustavus Adolphus and George S. Patton are others that are well known to the world.

But there are modern day warriors that are not well-known and they wage a private war, many times in isolation.  Just like the ancient warriors these warriors apply tactics, strategy, statecraft and logistics.  These warriors are not readily identified, because they do not wear armour or carry swords and they have no army following close behind.  These warriors are armed with the Internet and look to each other for comraderie and to share strategy and tactics.  What characterizes these warriors that are so invisible to the world?

The warriors I speak of are an elite group of "wounded" warriors and their ranks span our mother earth.  The intrinsic enemy they fight is poorly understood and it seeks to destroy the body, the mind, the spirit and quality of life.  Its vicious attack is relentless.  Its persistence creates an urgency in the warrior it invades, but urgency only robs the warrior of precious energy resources.  The extrinsic enemy wears street clothes or lab coats; they are the warrior's family, friends, acquaintances and healthcare professionals.  This enemy is lethal, because it seeks to defeat the warrior's emotional resources and is frequently dehumanizing.  At a time when these warriors need emotional and physical support the most, they must mobilize a fierceness from within they have never witnessed before, and they must become their own advocate.  The remarkable characteristic these warriors possess is the ability to call up a determined and intense spirit that is simultaneously caring, kind, sensitive and supportive of others.  These "wounded" warriors have the ability to fight a fierce battle and yet demonstrate a compassion and understanding for others beyond themselves.  This unique capacity for compassionate caring for others while struggling with pain,