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