Thursday, December 20, 2012

Your spirit, essence and intention lingers in all those things you touch

This Christmas is so different from my Christmas in 2011.  Last year the house was decorated and the atmosphere was festive.  Multicolored lights twinkled on the tree and greenery boughs gracefully drooped around each side of the overhead kitchen cabinet.  The table was set with red Dansk Nordic Knits dishes and minature lanterns lit each place setting.  It took me several weeks to complete the decorating, but I was relaxed and enjoyed every moment of the holiday season.  This year is different, because there are no decorations and in their stead are stacked boxes of the belongings that will be moved to Arizona.  The excitement of the move has been replaced with the arduous task of packing dishes, glassware and other breakables with extra care that a long distance move requires.  As I pack each piece I think about the journey and wonder if I have packed it with enough care to ensure its survival.  I had special concerns with Sid's mother's antique ink well collection.  A good friend of ours, Bob, has his own moving company -- Bald Eagle Movers.  Bob will be moving us into our new home and will be the first of our friends to be stepping across the threshold of our front door.

The gift of carefully folded paper
A couple of days ago Bob dropped by with previously used empty boxes and a large box of neatly folded packing paper.  Bob had obtained the packing paper and some used boxes from someone that he had just moved.  It was so remarkable that each sheet of packing paper had been folded with great care -- all the edges were lined up and the crinkles in the paper had been smoothed out as if each sheet was an expensive linen being prepared for placement in a linen closet.   The tall stack of folded paper fit neatly inside a large box as if this box had been specially selected for a custom fit.  The packing paper I had purchased and had been using for packing was a rather monotonous task.  Today I

Tuesday, December 18, 2012

Willis-Ekbom Disease (restless legs syndrome) research may lead to better zzzzzzz's

Willis-Ekbom Disease (restless legs syndrome) is a serious movement disorder related to Parkinson's Disease.  This disease causes significant impairment in many people's lives and affects children and adults.  It is well-known that WED/RLS has a major effect on the ability to get a restful night's sleep, which is the most prominently identified WED/RLS symptom.  The Willis-Ekbom Disease Foundation (formerly known as Restless Legs Syndrome Foundation) is an excellent information resource for people suffering with this disease, and for medical professionals too.  The Web site may be located at; I encourage you to check out the Web site and consider joining this organization to give WED/RLS a strong voice.  Their publication, Nightwalkers, is always a resource of helpful, up-to-date information that includes some of the latest research.  Nightwalkers is published quarterly and I recently received a hard copy of the Fall 2012 publication.  There is an article, Exploring the Role of Glutamate in WED/RLS, in the Fall 2012 publication on page 13 that discusses recent research containing valuable information for people with WED/RLS . . . and possibly fibromyalgia.  Many people with fibromyalgia have WED/RLS.  This research may provide clues that connect these two illnesses and explain the sleep disorder that is prevalent in both.

The new research featured in the WED Foundation 2012 Fall publication is a study conducted by a Johns Hopkins team of scientists.  Dr. Richard P. Allen, the principle investigator, stated that glutamate-hyperarousal (glutamate is an excitatory neurotransmitter) would be a third major area of documented brain abnormalities in WED/RLS.  The three brain abnormalities are dopamine, iron, and now glutamate, if this research confirms the glutamate connection.  The most commonly used

Friday, December 14, 2012

Life is so fragile and each day is a gift

So many things in this world are difficult to understand, but none is more uncomprehensible than the senseless taking of a human life.  We all struggle to make sense of the seemingly random acts of violence that have occurred in our schools, shopping centers, restaurants, theaters and other public places and in our homes too.  We experience an array of emotions in response to these acts, including anger, sadness, grief and loss, and frustration.  We feel the tremendous grief and pain these families are in and wish there was a way to ease their pain.  In response to these emotions we search for remedies so this never happens again.  Psychologists attempt to identify the "warning signs" that indicate the breaking point of a human mind, but there are no easy identifiable signs.  The isolation and powerlessness that people may feel can push the limits of the mind, but each person deals with life's challenges differently.  When attempting to identify the cause of such violent acts, people tend to focus on the obvious "problem":  availability of firearms or possibly the prevalence of violent movies and video games in the U.S..  Conneticut has one of the stricktest gun laws of all the 50 states and it happened there today.  Twenty-seven precious lives were lost.  So what is the real problem that results in so much tragedy?  To identify the real

Sunday, December 9, 2012

When "stuff" invades your space

Arizona mountain sunset
Most of us in the U.S. have way too much stuff.  I was thinking about that and it is such a curious thing to me that we hoard stuff that is actually quite insignificant in the whole scheme of our lives.  Some people get tired of their stuff and change it out for all new stuff.  I'm wondering why all that stuff plays such an important part in our lives.  Are we so weary of our lives, ourselves and our environment that we encumber our lives and waste our money on things we don't really need?  When I see a homeless soul walking on the side of the road I am in awe of their small pack that holds all their earthly possessions.  These resourceful people have perfected the art of limiting their stuff to a few priorities.  I have a good girlfriend that packed up her Ford Pinto with her stuff and drove across the country in the 1970's to live in another state.  That really impressed me.  She was able to put everything important

Sunday, December 2, 2012

Kaleidoscopic possibilities and perspectives

How are you doing today?  I so rarely receive a comment and I am really wondering how things are going for you.  I'm a little rough around the edges, but with the support of my husband and some good friends I'm actually doing well.  We are leaving for Prescott, AZ in a few days to look for a new home.  Big life changes can certainly create a measure of stress.  Throughout this life journey I am constantly amazed at the kaleidoscope of possibilities and perspectives that change the fabric of reality from moment to moment.  When I let go of the power and control I try to have over unfolding life events, I discover the superficial and monocular view I had held so dear begins to dissolve.  In its place appears a brightly colored stained glass pattern of reflected light representing all the opportunities before me.  Seemingly dead ends become a multitude of doors leading to new adventures and sometimes unexpected outcomes.  As these adventures unfold there are more possibilities as the kaliedoscope continues to turn.  I just have to let go and be willing to move forward into the vastness and uncertainty of the unknown.  It's a leap of faith that keeps me moving forward.  The alternative is to remain stuck in a place that becomes dark and dreary, predictable and

Monday, November 26, 2012

How slow can you go??

Martha Stewart's Woodland Christmas
This time of year has been a source of dread for me in years past.  Visions of the "perfect" holiday appear on TV specials, in holiday magazine editions and everywhere in stores.  The perfect table must be set with food served that rivals the head chef's entrees at the Hilton.  Delectable goodies must be made and served on just the right plate.  The images of people giving and receiving expensive gifts with delighted, joyful faces complete the perfect holiday picture.  But those images are based in fantasy and aren't grounded in reality.  The most memorable holidays are those that had their share of disasters, like the year we went to put the turkey on the grill to slow cook for hours only to discover that the bird was still in the freezer.  Over the years I have found that each holiday season can be whatever I want it to be and as a result each year is different from the other and that's a wonderful thing.  By listening to the pulse of each season and accommodating whatever life has presented at that time, I have found that all my life experiences are fond memories, because these

Tuesday, November 20, 2012

In awe of the living things with which we share our planet

The President in Sequoia National Park courtesy of Nat Geo
Sequoia National Park by Nat Geo
Whenever I become too focused on my own concerns I like to remind myself there are other people that have concerns too.  I also like to refocus my attention to the amazing living things that share our planet with us.  Today I received the December 2012 issue of National Geographic.  On the front cover is a picture of The President: the giant sequoia that has lived in Sequoia National Park in California for the last 3,200 years.  When this tree was born there was no National Park and there was no official California.  Just the pristine land and the trees and all the living things that benefit from these magnificent giants existed at that time.  The President is not the largest tree on Earth; it is only the second largest.  It isn't as tall as the giant coastal redwoods in northern California or Eucalyptus regnans in Australia (highest reported tree was 375 feet tall and was felled in the late 19th century), but it is far more massive.  The President reaches for the sky at 247 feet tall, its four largest limbs are as big as large trees, and it has a thick crown that holds an estimated two billion leaves.  The only tree that has a trunk of greater bulk is that of The General Sherman; a tree that is also in Sequoia National Park.  (2012, December.  National Geographic, pg 28 - 41).  If you have never seen these magnificent trees I would urge you to make the trek to 7,000 feet where these trees thrive despite the rugged conditions in the Sierras.  Standing next to one of these giants is truly a spiritual experience and in doing so we realize that we are just passing through a world that belongs to them.  They are tough survivors that have seen so much in their long lives.  They are an ecosystem unto themselves and provide a home for so many of Earth's creatures both plant and animal . . . and insects too.  I have never felt so insignificant as the moment I stood next to The President and The General Sherman.  It was a lesson in humility for me and I have never forgotten that moment even though it was many years ago.  That moment of humility reinforced that those things that I believe to be important and urgent only belong to me and are ultimately of little consequence or importance to anyone else.

Monday, November 12, 2012

Your pain experience is unique and personal

Pain is a poorly understood phenomenon.  Pain has been treated and studied for so long, and Western medicine has made extraordinary advances in so many areas,  but we still have only a fundamental understanding of pain's mechanism.  Pain is a complex mechanism that involves physiology, spirituality, emotions, and perceptions.  As in all health issues, it involves the mind/body connection.  When people are in pain it is a completely subjective and personal experience.  Pain makes people feel emotionally out of control, which increases anxiety levels and increases the intensity of the pain experience.  That is why lavendar aromatherapy decreases the perception of pain; lavendar is a calming herb.  When I was working with an Interventional Radiology Department I observed that women experienced more pain than men when a chemotherapy port was placed in the upper chest.  When I presented that information to the port placement team it was decided to give women a prescription for pain medication before they were discharged back home.  In my follow up calls women reported they didn't fill the analgesic prescription, they still had pain, but they tolerated that pain better because they knew they were in control and could opt to fill the analgesic prescription if they wished. I have also observed from my own experience that the more pain medication I use the more I seem to have a rebound increase in pain.  Therefore I use pain medication as judiciously as possible.  That rebound pain experience

Thursday, November 8, 2012

Hanging on the precipice of change

How are all of you on this beautiful day?  We have stormy clouds and scattered rain today.  It's the kind of day that I usually enjoy, especially because the garden celebrates the rain.  But on this day the weather seems to be oddly symbolic for the state of my beloved country.  A storm brews with the outcome of our election and I fear that life as I have known it with the abundant freedoms I have enjoyed is now gone forever.  I am in mourning.  We are a divided nation that believes throwing darts at each other in the form of hateful rhetoric will solve our critical problems.  We are on the Obama Care implementation path that will lead to a disastrous destruction of our healthcare system.  The thought of our healthcare system moving toward care rationing is frightening to those of us with chronic illness.  No one in the current Administration talks about care rationing, but that will be the result of this healthcare model.  In addition, we are perched on the edge of a fiscal cliff so high that the bottom is not visible.  I fear that solutions will come too late or not at all.  The change that looms before me and all Americans will be one of the greatest challenges of our lives.

I have written about change in previous posts.  I am quite adaptable and flexible with changes, because I am always in a problem solving mode.  The changes in my life have always felt rather comfortable, because I have consistently

Friday, November 2, 2012

The personal search for a cure . . . or do we write our next life chapter?

Autumn colors in Lori's yard in Missouri
I keep informed about the latest news on fibromyalgia research and I'll bet you do too.  There are books available that claim they know the answer for a cure.  From my experience there are fibro flares or excacerbations and there can be varying levels of remissions.  When people experience a significant remission they rejoyce and celebrate their victory and welcome the return of wellness.  They believe they have reclaimed their "life" defined as a youthful exuberance.  But fibromyalgia and chronic fatigue lurk in the background waiting to strike again with a vengence.  Being in denial does have its benefits, but as this illness marches on the reality of our lives becomes clearer and more difficult to avoid.  Current research indicates that fibromyalgia and chronic fatigue are due to central nervous system sensitization, but what causes the central nervous system to be overly sensitive to stimuli?  So we still don't know the root cause of this illness, therefore treatment continues to be focused on symptom management.  The reality of symptom management is we must spend every hour of every day managing those symptoms.  Each of us is familiar with our own particular fibro rhythm that we experience every day with little variation.  How productive is it for us to wait for a cure so we can return to our previous wellness plateau?

Rose in Lori's garden in Missouri
It seems to me that life is lived as a series of chapters in a book that is continuously in the process of being written.  Some chapters are longer than others and there are times when chapters are frequently revisited and revised.  When chapters are revisited and revised that means that new chapters fail to unfold and that life book becomes stagnant.  Reminiscing about the past means existing in a static state and new life chapters fail to be written.  There are no dramas, no adventures, and no comedies added to our rich life experiences.  It's as if we have chosen to hang in a sort of suspended animation that is equivalent to being in a self-induced coma.  That seems to be a sad choice for any of

Monday, October 29, 2012

Today is the first day of the rest of your life --

 When chronic illness is in your face every day it is natural to focus on the day that lies before you with a certain amount of anxiety and dread.  One day at a time day after day.  That's a tedious process which breeds sadness and discouragement and robs us of our life.  Fibromyalgia is such a tremendous personal challenge that demands so much energy just to cope each day; precious energy that we don't have.  That's a static place to be.  To feel alive it is important to live in a dynamic place. Enjoyment of life includes residing in a dynamic environment that embraces change and challenge.  Every living thing must meet the challenges life poses every day.  Those challeneges remind us that we are alive and vital human beings.  Those life challeneges are not so ominous when we have a solid life partner and good friends.  Those people will help us through life's challenges as we help them too.  It is so beneficial to be able to ask for help when you need it.  The word "help" is a magical word that engages others with us and confirms that the helper also has another life purpose too.

So today is the first day of the rest of your life.  How will you spend that day?  What changes will you make to ensure you don't spend that day in a sad place?  A good friend of mine chose to have a beer the other day.  That single decision

Wednesday, October 24, 2012

Connecting to the earth and our energy flow. . .

The other day we had rain . . . I'm talking buckets of rain.  Spillways and streams have been silent in suspended animation all summer as they wait patiently for the rains.  We haven't had rain for 7 months so the first rain is quite a welcome site.  I water my garden during the dry summer, but many plants just struggle for survival as they yearn for mother nature's life giving rain.  So the other morning my plants gayly reached for the sky in delight as rain caressed each tiny leaf.  Those plants that struggled the day before for their mere existance flourish today in celebration of the rain.  It reminded me of being back in the midwest where I grew up.  We referred to the heavy rain as raining cats and dogs.  We even had a rare clap of thunder with lightening just like the midwest.  You may already know that lightening liberates nitrogen from the air, which provides the nutrients that plants need to thrive.  The day before the rain my newly planted impatients looked droopy and sad.  I thought I had done everything I could for them, but what they needed was the one thing I couldn't provide -- rain.  The rain is the harbinger of autumn, and winter to come here in Southern California.

I spent time in my garden today with all the happy plants  . . . and the weeds.  It's wonderfully cool outside and perfect for getting grounded in the garden.  Connecting to the earth helps us to ground our energy and regain a beneficial energy flow.  My good friend, Shirley, introduced me to Earthing, which is method of grounding with Mother Earth.  I always knew that digging in the dirt felt so therapeutic; no matter how much pain I have, I am always drawn

Monday, October 22, 2012

Don't lose your life, your story and the essence that is you!

I have just returned from Arizona where my husband and I are looking for a new place to spend the next chapter of our lives.  It is time for us to leave California for any number of reasons.  That is why my blog site has been neglected for a short time.  I have thought about all of you every day and the struggles that we go through together.  It is comforting to know that all of you around the world are there with me and I with you as we enjoy the moments every day has to offer.  A long distance move creates a measure of stress, but I luckily enjoy change so I will take each day as it comes one at a time.

While I was traveling to, from and around Arizona I was thinking about how all of us have been reduced to being patients in our healthcare systems.  I'm sure all of you have a feel for what that means and I believe that this feeling is universal regardless of which country you live in.  Becoming a patient automatically puts us in a nondescript role by our medical communities.  We lose our identity and become an illness that is dissected into body parts lacking a personal history, an identity, and the essence of who we are.  There is nothing more dehuminizing than being reduced to a diagnosis that fails to acknowledge our humanity and ignores our accomplishments and our life story.

Have you lost yourself and your remarkable life story in your process of becoming ill with fibromyalgia?  We are unable to do all the activities that we did prior to getting sick, but does that mean the begining of our life story no longer exists.  Every day of our lives defines who we are and is

Thursday, October 11, 2012

Smashed Melon

Pain. Why must you remain?
The sun's too bright . . . I like the rain.
             Everyone thinks Im insane, but its pain.

Tired -- but also so wired!
If I could get a job I would be fired.

It's hard to cope when you're losing hope.
Do you want to go?  I have to say No!

When will it end? I don't have a friend . . .
            my head needs to mend.

It's hard to fight when you can't stand the light.
There's others like me, all stuck up a tree --
            no, maybe a cave, to this illness I am a slave.

I'm losing my fight, 'cause I can't sleep at night.
I'm up and I'm down . . . my face growing a frown.

People so rude!  I've gotten a bad attitude.
People think you're lazy and crazy,
             my eyes are all glazy.

I'll pop the pill, to get the will, to climb the hill.

PAIN . . .

My eyes always red, a metal bar through my head!
Yeah -- I know what was said, these feelings I've read.

I wish it would all leave, and that they would believe --
it makes me want to heave.

When will it be gone?  It has been too long.
I will keep up a smile, but how long is this while?
              I fall in a pile.

Tomorrow will be better, so I can be a go getter.
Yes, I'll boo hoo from pain and my messed up brain,
              I'm glad for the rain.  

I can.  I can still love, I can still smile.
And at times the pain goes for awhile.

Life is not lost, but I've paid a high cost.

The Laughter is still here, although not as clear,
               but I'm losing my fear.

                           Kind of ironic in a great way....NO HEADACHE TODAY!!!

My wonderful, loyal friend, Lori, shared this poem that she wrote.  Lori is a creative jewelry artist that loves life, gardening, and people.  She has a clever sense of humor and is compassionate with others; Lori has been a wonderful support for me even though her own days are so challenging.  She is a beautiful and sensitive woman and has been ill with fibromyalgia and other complications since she was in her teens . . . for about 31 years.

Wednesday, October 10, 2012

It's a marathon, not a sprint

Remember the 2012 London Summer Olympics?  As I sit here at 3:53 a.m. I am reminded of those olympians and their extraordinary athletic feats.  Those determined athletes that trained so hard and overcame incredible obstacles so they could compete with athletes all over the world.  Did you watch those 2012 London games?  The passing of the olympic torch and the lighting of the olympic flame in the arena.  What a spectacle to behold.  I am also reminded of the beauty of the runners both long and short distance.  The sprinters, running with explosive intensity, displayed an exciting few moments when every fiber of their bodies are pushed to their limit.  It's an impressive few moments when the pain and extreme effort is evident in the bulging of muscles and the intense facial expressions.  The sprinters were quite a contrast from the long distance runners.  The marathon runners quickly settled into a paced rhythm, a focused concentration written on their faces.  Those marathoners appeared to be somewhat relaxed in comparison to the sprinters, after all, they were in it for the long haul.  Taking in fluids as they ran, they just kept moving forward.  The long distance runners didn't even seem to notice the other runners or the spectators cheering them on.  Their focus was so complete, their journey a personal challenge without dramatic fanfare, they just kept moving forward never changing cadence or their resolve.  That reminds me of another marathon . . .

You know, this race we run isn't a sprint.  Our race isn't even a race.  There's no celebration as we cross the finish line, because our race has no finish line . . . atleast not yet.  We run this marathon in search of the finish line with an unparalleled determination, fortitude, and grace.  We run with the relaxed, paced rhythm of a marathoner that is in the marathon of his/her life.  When we lose our pace, we stumble and fall, but we always get up again and get back in the "race".  With the determination and resolve

Tuesday, October 9, 2012

Why don't people see my invisible illness?

Did you know that according to the 2002 US Census Bureau approximately 96% of people who live with a chronic illness have an illness that is invisible?  These people do not use a cane or any assistive device and may look perfectly healthy.  It is believed that 1 out of every 2 Americans live with a chronic illness and that doesn't include all the people that have chronic pain.  Even though this statistic is outdated and doesn't include everyone, it is a startling statistic.  So why don't we see these people and why don't they see us?

For people that are chronically ill, every day means managing a chronic illness that has had an impact on their quality of life.  These people live all over the world and are all ages, religions, cultures, and nationalities.  As we age the opportunity to develop a chronic illness increases.  Some illnesses are life threatening and others are more of an annoyance.

When I worked at one of the Southern California hospitals I was involved with the Adult Congenital Heart Disease program.  Babies born with a congenital heart defect 40 years ago started to survive due to advances in surgical techniques.  Prior to that those babies didn't survive.  Now we have a whole new adult patient population with congenital heart defects that were corrected as babies and they now need revisions done.  These adults have become the pioneers for adult congenital heart disease surgical and medical management.  They are fearful of dying every day and they are anxious and lonely.  There aren't that many adults with congenital heart disease yet, but their numbers are growing as surgical intervention

Monday, October 8, 2012

It's Just a Day . . .

Do you see the pain I feel
                  in my face or in my eyes?
Do you believe that this is real
                  or feel I'm living behind a lie?
When I cry do you hear?
                   . . . do you listen when I talk?
Do you understand my fear?
                   . . . or am I just someone to mock?
Does anyone out there even know
                 what each day I face could be?
I can't stay but I don't go
                  sometimes it's hell just being me.
So I walk away head held high
                  back held straight and strong.
It's the way that I get by
                  lasting only as the day is long.
So here we go
                         another day
                                              I don't know
                                                                    what's left to say . . .

My good friend, Tracy, wrote this poem.  She is a strong, accomplished and beautiful woman with a delightful sense of humor.   Tracy loves gardening, and her wonderful dane puppy, Jagger, and she is enthusiastic about life.  I treasure her friendship more than she will ever know!  Tracy has had fibromyalgia for 18 years.

Sunday, October 7, 2012

All the seasons of your life

My favorite time of year is autumn . . . spring is good too, but there is something about autumn that energizes me.  We are just getting into our autumn weather.  Last week was so hot, but the last several days have been cooler (in the 70's) and I feel like getting back outside in the garden again.  Time for the autumn cleanup and weeding out all the plants that got burned up by the hot weather.  Gardening is so different here because I cut the plants back in autumn and they immediately start growing again.  Perpetual gardening!  Time to replant my herb garden so I can cook with fresh herbs this winter and I'm going to put some greens in for a cool weather crop so we can have fresh salads.

Yesterday I went to Myrtle Creek, one of the local nurseries, which has a quaint and relaxing atmosphere with a pond and a fountain, and lots of garden nooks to wander through.  There is an old house there with a small veranda that has been converted into a shop with several rooms where seasonal treasures can be discovered.  This autumn Fallbrook is having a scarecrow festival so there are lots of scarecrows everywhere and Myrtle Creek is no exception.  I went there yesterday, because I was feeling a need to get out of the house and have some alone time to wander around the nursery.  It was very therapeutic!

I'm looking forward to winter coming too.  Believe it or not it gets cold in Fallbrook and night time temperatures can dip into the 30's and occasionally we even get frost.  I look forward to that because I put avocado wood in the fireplace and sometimes I have wood burning all day and into the night.  I love that smell; it brings back good memories of times past and I look forward to new memories yet to come.

It's a good time of year to go up Palomar Mountain, which is about 45 miles from Fallbrook to the top of the mountain.  I usually see turkeys on the ride up the mountain and at one of the lookouts there is an ocean view.  There are lots of pine trees and the Hale telescope can be seen near the summit.  On the way back down it's fun to take the long way back home and stop in Julian, a mountain town, for a piece of their famous berry pies and some cinnamon ice cream.  It's my mother's 88th birthday on October 13 so I'm taking her up Palomar Mountain for some fresh air and a change of view.  She's a fiercely independent woman that has overcome many obstacles in her life, including the Great Depression.  She lives in her own home and drives a car . . . she has so many activities planned each week that she has a difficult time getting all of her gardening done!  She is certainly a real survivor.

All of those seasonal activities make the daily challenges of fibromyalgia less of a focus in my day.  And meanwhile I have good memories to mark the seasons spent with the people I love.  Maintaining a positive outlook and not giving up all the things you love is so important for quality of life.  As Sid would say, "I may not be as good as I once was, but I'm good once as I ever was!"  Life is good so enjoy all the seasons of your life to the fullest of your ability so your regrets are few and your happy, joyful times are many.  Blessings to you during this beautiful autumn season . . . or during your spring time with all the blooming spring flowers, whichever season you're in today!

Patience moves mountains . . .

When I was in my twentys I was quite impetuous and didn't take the time to really think things through. Many decisions were knee jerk reactions that some times came back to bite me! After all, my frame of reference was limited and I wasn't all that street smart. My thirties weren't all that much better although I had begun to amass more wisdom. I was blessed with the ability to weigh options quickly, select the best option and implement the plan. That could be unsettling for some of the people around me, because they may have still been weighing the options when I was busy implementing. That wasn't a skill that worked well with team decisions and I didn't have the patience required to gain consensus. So it was in my forties that I began to learn the virtues of patience. I had spent so much time avoiding patience that the lesson was a hard one. The day I got injured was the beginning of that lesson as I learned the meaning of severe, acute pain that went on and on, and then became severe chronic pain. I must admit I was an extremely slow learner. I was anxious to resolve this injury and get on with my life plan, but unknown to me there was a different life plan laid out for me. I admit too that I traveled down this life detour absolutely kicking and screaming.  I had never known a substantial life detour like this one. And that was the start of my real education, because up to this point I was working a haphazard life plan that didn't permit me to understand the deeper meaning of life events. It was time to slow down, reflect on the finer points of my life events and draw more meaningful conclusions. Those little nuances that had escaped me before were now glaring right back at me and they were impossible to ignore. How could I have missed these messages in previous years that had so much importance?

The wisdom of Let go, let God is invaluable when faced with a stressful situation that requires patience while things work themselves out, and you don't need to be a religious person to understand the wisdom of these four words. It's good to know the difference between times when immediate action is required or watchful waiting is the preferred method. When a true emergency occurs it is obvious that immediate action is required, but if you aren't faced with a true emergency there is no reason to act right away on anything. Take time to think it through. If you feel as though you are trying to control a situation it is probably wise to stop, take a deep breath, and settle in for the wait. That's the hardest thing to do, especially when you want to control something or someone. Just let go of it and watch miracles happen. The outcome is usually very different from the direction you may have wanted it to go, but when all is said and done, things work themselves out for the best. I have gotten quite good at the watchful waiting game, because I have had lots of practice. 19 years of CFS/FMS have made me a pro, and learning this skill has benefitted me in many other areas of my life.

When I first became injured and then sick with CFS/FMS I couldn't wait for the nightmare to be over. I kept thinking if only I had a common cold I could rely on the 10 days of sniffles and cough and then go on my way. But the nightmare didn't end and I couldn't find a doctor that could help me either. I was out there on a fragile limb by myself with bills to pay. I had to go to work or lose everything I had worked for all my life. So every morning I picked myself up out of bed and just went to work. Every day when I woke up I felt so sick and was in such severe pain, all I wanted to do was call in sick, but then I reasoned that I would feel just as sick the next day and the next so which day could I say I was sicker and needed to stay home? So I just got up and went to work. It was the toughest thing I have ever done other than raise a daughter. But I learned the true meaning of perseverance and fortitude . . . and patience. I soon learned I was in this for the long haul and I might as well sit back and relax for the ride. When someone at work would be stressed out about something I would say, "Did anybody die?" If no one had died then it could be fixed. I ended up running a Joint Commission hospital and clinics survey and prepared the entire organization for that event. I calmed everyone when they would feel stressed that these regulators were coming and they always felt better. I had learned patience and with that came a calming peace in my life that I was able to convey to others. That hospital and clinic system passed the survey with flying colors, when other organizations weren't fairing as well.

Now, let me tell you about my girlfriend, Shirley. She is a remarkable woman and a loyal friend. Shirley and I met about 47 years ago in Junior High School and we played basketball together in High School. When we graduated High School we went our own ways. Shirley spent the years after High School raising her family and working with her husband in business. Shirley now has the freedom to do what she has been called to do -- make other people's lives better. Shirley became a therapeutic massage therapist and many of her clients have Myofascial Pain Syndrome and/or Fibromyalgia. She patiently works with her clients as long as it takes to bring them pain relief. Shirley provides some of her services at no charge when she works on a client for up to 2 hours or longer. She works to release the tight bands of myofascia and reduce trigger points, which provides a long lasting pain relief. Her technique is gentle and she partners with her clients to ensure they feel able to continue a longer session. Shirley's generosity, love, and compassion drive her life purpose. Shirley is a beautiful woman and some of that beauty comes from her positive energy, enthusiasm for life, and the love she readily gives to others.  I couldn't possibly ask for a better friend!

Patience is a quality that will bring you peace and give you the endurance to be a pro at watchful waiting. Having patience is beneficial in your personal life and your professional life too. So, when you feel that a decision needs to urgently be made, or you feel impatient for a situation to unfold that you are trying to control, sit back, relax and evaluate the situation with a calm mind. And with plenty of patience. Blessings to you as you patiently make your way through life!

Friday, October 5, 2012

Enthusiasm goes viral!

People are automatically drawn to high energy people that are passionate about life. That energy and passion are so "hot" that they are out front and center. These are the people that love life so much that they wear it every day as if their own life depends on it. In a way, their life does depend on it, because where is the quality of life without enthusiasm?   When enthusiasm wanes so goes joy, passion, happiness, satisfaction and life purpose. When your life purpose is lost and enthusiasm becomes a distant memory, your brain will retreat into a sad and dark place.

Have you ever watched a child at play?   They love to explore everything in their world with a great passion. It is so fun to watch their life adventures as we personally yearn for the enthusiasm of those earlier years. Children are so enthusiastic that they run wherever they go and they are living life large at full steam ahead at all times. No wonder they sleep so well!   So what happens to that enthusiastic frenzy that characterizes the waking hours of a child?

Maintaining enthusiasm and passion for life requires energy and resilience. Each year serves up challenges that test our resolve. These challenges become more intense as energy wanes with age or from a chronic illness, like fibromyalgia. As the years go by we vigilantly compile a mental scrapbook of all our life experiences and challenges. Every day our brain revisits that mental scrapbook in our conscious and subconscious mind. That scrapbook review shapes your day and your response to all the day's events. Your life scrapbook that showcases all your life experiences is a truly powerful book indeed! Your life experiences scrapbook demonstrates who you are and those pages are shared selectively with others every day. As your scrapbook's pages fill up you may get weary of keeping it up to date and decide not to add more pages. That's an indication you have decided to lose your enthusiasm. So what have you put in your scrapbook, what is the title of your scrapbook and how have you displayed your important life events?   Have you decided to use bright, eye-catching colors for those difficult days or for the valuable lessons learned?   Does the title of your scrapbook portray a life of enthusiasm and passion, or a life of defeat? 

Sid is a remarkable man.   He is an excellent example of enthusiasm for life. The only way people know that Sid survived stage 4 malignant melanoma and several years of potent chemotherapy that would have been the average person's demise, is the radical neck dissection scars he wears every day.   Sid maintained a positive life outlook and enthusiasm for life despite the doctors that told him he was going to die. That didn't discourage Sid, and his determination and enthusiasm ultimately defeated

Thursday, October 4, 2012

My Garden Guest

There came a little garden guest
a rapping on my door
to ask of me about my quest
and about the pain I bore.

She delighted me as she flew
and looked me in the eye
as if to tell me that she knew
I worked to just get by.

There comes a day, she conveyed to me,
when hope will find a way
to let me know friends are the key
and love me come what may.

And as she spoke to me that day
the tears began to flow.
I had no single word to say
so how was she to know?

The loneliness of this disease
just claws within my soul
and makes my pain so much to bear --
a mean and nasty foe.

But the wisdom of those simple words
console me through tough times
and soar within my soul like birds
with love and joy divine!

This poem is a tribute to Sid, my best friend and life partner, and to all of my friends  that stand by me every day during this journey with love, compassion and hope.  May each of you be blessed with enough love to make each day better and give you hope for tomorrow.  Blessings to you!

Wednesday, October 3, 2012

The Road Rash Rules of Life

Anyone that rides a motorcycle is aware that road rash may be lurking right around the next corner.  Not the desired outcome of an enjoyable carefree ride with a stiff breeze in your face.  One second you're upright just moving on down the road, your front tire hits a little antifreeze on the road surface -- BAM --road rash!  It's like that with fibromyalgia.  One second you're cruising through life having a great time and the next second you're down -- BAM -- fibromyalgia road rash!  And you never even saw it coming.  All that defensive living didn't amount to a hill of beans.  What the heck is up with that??!  You might as well go out and eat a donut and a big bowl of ice cream . . . and gain about 20 to 30 pounds in the process.

I keep thinking about how I could have avoided that fibro road rash, but I guess if I couldn't even see it coming and I thought I was being a defensive liver of life, what would I have been looking for anyway?  I can tell you it certainly took me by surprise and I'm sure it did you too.  So where are the rules of the fibro road?  I have been up many a sleepless night working to put that puzzle together and looking on the Internet for the rules of the fibro road manual, but I haven't

Tuesday, October 2, 2012

Nurturing your mind, body and spirit . . .

Today I received a message from a good friend of mine.  She was so distressed that she had missed another family party and the criticisms that she can only imagine that come from family and friends when her husband arrives alone.  I am astounded at how we are able to feel each other's pain from messages that come to us in cyberspace.  Some of that pain is a recognizable personal pain that comes from our own personal experiences.  We have all been in that same place.  Either that or we attend family and friend get togethers regardless of how we feel; in essence we put ourselves last.

In a previous blog post, Don't Ever Let Them See You Sweat, I talked about our invisible illness and how that actually helped me to keep working.  My writing was focused on that warrior side of us that won't give in to this illness.  But that is only part of our collective story.  It is critical that we listen to our bodies every day and that we place ourselves first so we can be as healthy as possible.  I want to reiterate that we absolutely cannot wait until others understand the gravity of our illness and the daily struggle for wellness.  For our own quality of life, our survival, and our ability to thrive, we must be

Monday, October 1, 2012

Getting through the tough times

How are you today?  I'm thinking about all of you all over the world that are so sick every day with this illness that persistently tries to chip away at our mind, body and spirit.  Every single day feels like a contest and I'm often left wondering who will really win at the end of this race.  I'm sure there are many days when the time is counted in hours and minutes.  I know it can be that way for me.

So how do we get through this with dignity and grace?  Others around us don't understand that we can't keep up with them and many of us may feel unjustly criricized for not pitching in and doing more.  That can leave us feeling isolated, frustrated, sad, and more stressed.  You know, we can't wait until we are understood.  I see so many women with fibromyalgia that have lost their partners, which is in part due to their illness.  Our partners are with us for better or for worse.  So what on earth happened to the "for worse".  It's easy to be with someone during the good times.  The question is "Who is by your side during the tough times?"    And times don't get any more difficult than when there is a chronic illness that impacts your day every day.  That chronic illness impacts those around us every day too so they are living a chronic illness with us.  Is that what they signed up for?  Is that what we signed up for?  I see young people getting married and they share vows to be there for better or for worse.  I always wonder if they know what that really means and are they serious about those vows?  Today it's easy to run in the other direction when times get really tough.  But that's the true test of character and conviction.  Does that partner next to you stay the course?  That's the true test of devotion too.  That doesn't mean our partners don't get

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,

Monday, August 27, 2012

Engaging with positive auras improves your well-being

My last blog was focused on Highly Sensitive People and the impact  the environment has on these people.  You may be able to identify with some of the characteristics of being highly sensitive and other characteristics probably didn't quite fit for you.  This is because the human brain and the development of personality are so complex and each of us express our genes in a way that is unique to each of us.  I am an identical twin and I have been fascinated with the differences between my sister and me.  While we are so much alike in some ways there are also vast differences between us too.  I have fibromyalgia and my sister does not.  Since my sister and I are genetically identical, what accounts for those differences?  The latest research shows that the differences are expressed in the "tune" each of us has decided to play with our own unique variation of the same song.  Our genes are therefore expressed differently and with the differences in our environment we have developed into very different people.  The Highly Sensitive Person may be histrionic and theatrical . . . that does not describe who I am at all.  I tend to be stoic and practical, and I enjoy sitting back and observing "the action" around me.  I am not overreactive and take the time to process and analyze sensory information to the nth degree.  Sometimes I process and analyze that information too much!  I find that I instinctively seek out places to go that have good karma.  The gentle yoga class I attend has such good karma and the people there are warm and inviting, and they understand the challenges that life has posed for me . . . they share the same daily challenges too.  Inspite of those challenges we all laugh and hug and share those positive energies that highlty sensitive people so readily share.

So let me tell you about my favorite cafe that I am instinctively drawn to.  I have mentioned this cafe in a previous blog post . . . it's called The Z Cafe.  This is a place that has very good karma and I have analyzed and processed the interactions I have there that renew my energy and help me to feel better.  At first I thought it was just about the wonderful latte that is served to me each time I go or the Mikey's Special Oatmeal that I order with fruits, nuts and fluffy steamed milk topping an otherwise drab and tasteless dish.  This energy gift that I receive most times I am there is about the beautiful,

Saturday, August 25, 2012

Highly Sensitive People seem to develop fibromyalgia

I have always been interested in new theories and scientific research related to healthcare and human behavior.  It seems that behavioral science is coming closer to unraveling the fibromyalgia mystery.  I am active on a fibromyalgia forum and was interested to see a post that had been made by a psychologist involved in research.  This psychologist is evaluating the effect that childhood experiences have had on the development of fibromyalgia.  The theory being studied is that people with fibromyalgia have had an overprotective or unpredictable childhood that resulted in stress.  One of the interesting factors is this stress was not recognized as a stressor by the child.  In addition, it is thought that the absence of non-performance based acceptance and predictability is enough to cause serious psychological wounds.  Other characteristics that are implicated in fibromyalgia are perfectionism, needing to hold it all together, using your head to make decisions regardless of how you feel, poor self care, always being there for others to help fix their problems and having a Type A personality.  Certainly some interesting research.

The August 2011 issue of Psychology Today had an article titled Sense and Sensitivity.  This article discusses concepts regarding the 20 percent of the population that are highly sensitive people.  The highly sensitive person absorbs the moods and feelings of others around them and is able to sense moods in an entire room and cultural trends too.  The highly sensitive person is "attuned to subtleties of all kinds, they have a complex inner life and need time to process the constant flow of sensory data that is their inheritance."  The highly sensitive person has a nervous system that is set to register stimuli at a very low frequency and then these stimuli are amplified internally.  It is thought that the highly sensitive person is particularly prone to disorders such as chronic fatigue syndrome and fibromyalgia.  The highly sensitive person gets their feelings bruised easily and tend to personalize

Thursday, August 23, 2012

Are you sleeping at night? PART THREE

 I know the answer to "Are you sleeping at night?"  The answer for most of us with fibromyalgia is "no".  I had an appointment with the sleep specialist yesterday to learn the results of the sleep study that was done 1 1/2 weeks ago.  The good news was that I don't have sleep apnea.  I really wasn't interested in wearing a Cpap mask every night.  The other news I received was that my sleep study was "normal".  There was no evidence of Willis-Ekbom disease, probably because I'm taking Ropinirol to treat this.  There was no evidence of alpha EEG anomaly and no periodic limb movement disorder, which is frequently a component of Willis-Ekbom disease.  As I recall that sleep study night, I had slept poorly, experienced periods of "twilight sleep", had several episodes of awakening suddenly and woke up frequently to change positions and try to get comfortable.  The sleep specialist thought I need better pain management at night, but otherwise I am sleeping fine.  The disconnect that I see is the fact that even though the sleep study demonstrates that I'm sleeping normally, that isn't my experience and the sleep I get is nonrestorative.  The sleep specialist said that I would probably benefit from seeing a psychologist for cognitive behavioral therapy to improve the anxiety I have about going to bed at night.  I explained to the sleep specialist that I have absolutely no

Sunday, August 19, 2012

Feeling alive during the darkest days

Today is a really tough day for me, because I have more pain, no vital energy, a big headache, more "fibro fog", body aches, GI distress and generalized malaise.  How do we all explain this to people that don't know how we feel?  I can't pinpoint what has caused this flair although the weather is hot and humid with a hot wind blowing so this extreme in weather may be the culprit.  This is part of the rhythm of this illness and I don't really know how to stop the flairs that come and go when I haven't really increased my activity.  I have noticed that I have more flairs on Sundays, which I could explain when I worked full time.  All that activity during the week would make me start to crash by Thursday with a full blown crash on Sunday.  I was at a birthday party last night and I had such a flair of "fibro fog" that I couldn't hardly carry on a conversation with people.  I try to laugh that off most days, but last night was difficult, because I was talking with

Saturday, August 18, 2012

Joy and hope defeat the pain and fatigue

I am always amazed at the power of the human spirit.  There are countless stories about people surviving when all odds are against them.  When those situations are examined more closely the reason some people survive and thrive when others don't is all about determination, a positive attitude and the belief that they will survive the challenge they face.  I have a small book of quotes that I have had for at least 18 years.  The book is titled "Your Attitude Determines Your Altitude" and one of my favorites is "Whether you think you can or you think you can't, you're probably right."  Henry Ford said that.  Another one I like is "A person will be just about as happy as they make up their minds to be."  Abraham Lincoln said that and he suffered from major depression.  In those days there were few treatments for depression so he had to rely on the power of his own spirit to overcome depression.  That's not an easy task.

Those of us that have fibromyalgia have some major hurdles to overcome and depression, anxiety and feelings of hopelessness are common.  Fibromyalgia pain is a powerful force and the exhaustion that accompanies the pain only makes it more difficult to manage the pain.  I talk with so many fibromyalgia sufferers that are taking a number of strong analgesics with little to no pain relief.  In addition, it is imperative to monitor activity level because too much activity causes fibromyalgia symptoms to flair.  And it is difficult to determine just how much activity is okay and when the line is crossed, which leads to feelings of frustration and discouragement.  It is an understatement to say these two fibromyalgia symptoms impair quality of life.

So how do we overcome the fibromyalgia hurdles and improve quality of life?  The answer to this question is critical for all of us.  When I first started this blog I wrote about being the same person I have always been in spite of having an injury and becoming ill with CFS and then fibromyalgia.  I believe that we must incorporate all facets of ourselves to be a whole human being.  Our lives are a journey that lies on a continuum and as we age we wear many battle scars.  Fibromyalgia is just another chapter of our lives.  So we must know that every day we get out of bed is a good one and we know we