Sunday, December 29, 2013

Highly sensitive people are especially at risk when encountering a narcissist

People with fibromyalgia are frequently highly sensitive people or empaths.  Being an empath means that you have the ability to actually feel the emotions of others as if they are your own.  When others are celebrating and happy, the result for the empath is exuburance and euphoria; that feels so good.  But when others are grieving, sad, angry or experiencing a "hot" emotion, the result can be difficult for the empath if the empath has no way to protect themselves.  Being sensitive to the environment and energy fields of others requires a special skill set that other people don't have and don't really need.  One of the biggest difficulties in being an empath is that other people don't understand your sensitive and expanded perceptions of the world and the result is feeling isolated from others.

Tyler J. Hebert describes the empath in depth in his article "Empath (The Extra-Sensitive Being)" at  Hebert describes the empath as "a person that is hypersensitive to the emotions and energy of other people, as well as animals".  Hebert goes on to say that empaths have a sense of "knowing' and a very strong intuitive sense.  In other words, empaths have an extremely high EQ or emotional quotient.  I find it interesting that the way we have been easily identified is we have fibromyalgia.  Empaths are selfless people that often times put the needs of others before themselves.  Empaths are people that are loved in their social circles, because they relate to other people on a much deeper level than most.  The empath's energy is different and people automatically sense this energy and are drawn to the empath.  The empath's astuteness, which can leave the empath with feelings of isolation, can put the empath at higher risk of suicidal tendencies.  The empath absorbs the emotions of others and if the empath is unaware of this, the empath has the tendency to own those emotions.  That's why I frequently remind myself that what I receive from others is not about me.  Gaining an understanding of your empathic nature is critical in determining which emotions belong to yourself and which emotions belong to someone else.  Without that knowledge the empath may personalize everything around them and become defensive.  In addition, the empath may be labeled as co-dependant due to their sensitivity and identification with others' emotions, especially in relationship to their close partner.

The opposite of being an empath is narcissism.  A personal relationship with a narcissist takes a huge toll on the empath.  The hallmark features of a Narcissistic Personality Disorder is lack of empathy for others, verbal abusiveness, inability to relate to others on a deeper level, manipulative behaviors, controlling behaviors and explosive anger with exaggerated acting out behaviors that are not appropriate for the circumstances.  They frequently are pathological liars and they view other people in absolutes -- either all good or all bad.  Surprisingly, narcissists have a low self-esteem, which results in a need to be adored often.  They are also quite unaware of their own narcissism, which results in blaming their short-comings on others.

 Narcissists have no tolerance for disagreement and they never admit to being wrong.  There are different types of narcissists with numerous subtypes, making the identification of the narcissist difficult.  It can take a decade or more to identify the narcissist and if you are in a close relationship with a narcissist it can take absolute decades since their behavior can be confusing; you can't see the forest for the trees.  Narcissistic behaviors are also difficult to identify since they are masters of the facade.  Narcissists work diligently to mask their true selves, which results in their popularity in superficial circumstances.  When a narcissist is known on a deeper level their popularity fades and they have few if any long term relationships. 

I know the deep toll a narcissist has on an empath first-hand.  My mother, my identical twin sister, my daughter and my former husband are all narcissists.  In order to have relationships with these people I had to lose myself in the process.  I struggled for years to maintain these relationships, but in the end the effort it took and the toll on me was just too much, especially after I became chronically ill with fibromyalgia.  The continuous psychic bombardment required more energy than I could muster and in the end my health has suffered.  It is so critical for the fibromyalgia sufferer to gain an understanding of their gifts so there is an ability to set boundaries on the emotional energies of others that can suck the life out of you.  With every blessing resides a curse or downside.  If you are aware of which emotions belong to you and which ones belong to another you will be able to moderate your response to the heat of those emotions.  Anger has been a difficult emotion for me to moderate since I feel another's anger throughout my entire body.  Anger along with fear are two of the hottest emotions and your guard must be strong enough to avoid their devastating effects.  When interacting with someone I remain intellectually aware of how that person makes me feel so I am better able to moderate my reactions.  This has taken years of practice to develop the ability to keep my guard in place.  I purposely maintain some level of distance as a means of personal protection and when hot emotions begin to swirl around me I seek to give them back to their origin.

In the end, your ability to intellectually understand your gifts (along with their benefits and difficulties) will help you have more control over the environment that can seek to destroy you otherwise.  Blessings to you as you discover the essence that is you and the wonderful gifts that you have!

Saturday, December 28, 2013

We are only human and that's a good thing

Being human is quite a rollercoaster ride: we have lots of ups and lots of downs.  The difficulty with a chronic illness is it seems as though there are more downs than ups and that most likely is reality.  To face a difficult challenge every day requires a great deal of emotional and physical energy, which is probably in short supply.  When you think you are about as low as you can go, you discover that "pit" you're sinking into is bottomless.  Being highly sensitive sure doesn't help.  You are not only dealing with your own realities, but you are receiving signals from others which tend to zap your emotional energy.  So what is a "Fibromite" to do when that rollercoaster seems to be going in only one direction:  down?

Barbara Keddy, a Women and Fibromyalgia blogger (see my blog list), recently wrote about self-acceptance and avoiding self-criticism.  Barbara's introspective blog encourages people with chronic illness to avoid negative self-talk that only serves to put one's self down.  The messages that we receive from people around us, including medical professionals, can be negative messages that we may be tempted to personalize, which may then lead to negative self-talk.  The messages we receive from others actually tell us who those people are and their messages are not about us at all.  That can be a difficult concept since as humans (extra sensitive humans!) we most likely will have an emotional response to the messages we receive.  That's just about being human.  But we are also intellectual beings too and that gives us the opportunity to decide how we will use that message and our emotional response to that message.  It is the decision you make about the message and your response that will determine whether you have closure or if you sink further into that "pit".  For example, if a health professional doesn't give you a supportive message you may feel anger, frustration, sadness and a myriad of other emotions.  That's just about being human.  If we seek out a more supportive health professional, that's a positive action.  Ultimately that's how we get what we need for ourselves and find closure at the same time
We have a tendency to label our human experience as either good or bad, but in reality there is no such thing.  Our human experience is what it is and it is a wonderful thing to go along for that ride.  Our human experience should be a full experience that includes the entire continuum without being censored.  Our emotional reaction to our experience should be embraced and our intellectual understanding of that experience is just that -- understanding.  Isn't that what we all seek?  Understanding.  Understanding must first come from ourselves, which requires complete self-acceptance.  I become frustrated with others that don't understand, but my chronic illness is my experience and not theirs.  Other people don't have the frame of reference to really understand.  So I seek my own understanding and the understanding from others that share my experience.  I also extend understanding to others that can't quite understand my experience.  How could they understand?  This is a difficult concept for highly sensitive people since you more readily have true empathy and compassion for others, but not everyone has this ability.  The other day a person very close to me stated that "I need to just get over it".  That initially made me feel angry, frustrated and sad.  What I realized is this person doesn't have the capacity to really understand my experience and I must let it go.

My experience belongs to me and my response to that experience belongs to me.  There is no right or no wrong; it's about being human.  It is unfair for us to compare our response to the response others have, because our experience is unique to us.  When my day appears bleak it's a signal that I need to care for myself and that my needs must be my first priority.  Grief and loss are to be expected so honor those feelings and take care of you.  Be kind and gentle to yourself first and then you will be able to extend that to others.  Your experience comes first.  Feelings of anxiety, emotional pain and other uncomfortable emotions are not a sign of weakness.  We are emotional beings because we are human.  The more we embrace these emotions the better understanding we have of ourselves, and our ability to resolve uncomfortable feelings comes more easily.

When you look to others for inspiration and hope, avoid putting yourself down in the process.  Those people have down days and tough days too; you are not alone.  It's just part of being human and that's a good thing.  Blessings to you as you courageously meet the challenges of every day!

Wednesday, December 4, 2013

The nuance of attitude

Ozzie Osbourne with his son Jack
When I first got sick with fibromyalgia and I was dealing with the pain of an injury and two back-to-back surgeries I knew that my attitude was going to play a big role in my ability to overcome the misery I was in.  I have always tried to have a positive attitude, but some days that's easier said than done.  Experience has taught me that a positive attitude makes my day go better.  But despite this knowledge there are times when my attitude is in the pits and I don't like it there.  It's at those times that I seek out the wisdom of others suffering with a chronic illness.  This morning I was watching the news and I learned that Ozzie Osbourne's son, Jack, was diagnosed with multiple sclerosis a while back.  Jack appeared on today's morning news to briefly talk about how he deals with his diagnosis and he made a profound statement.  Jack said, "I don't live with MS; MS lives with me."  The nuance of his outlook really struck me; he doesn't want his chronic, progressive illness to rob him of his life.  He views his illness as only a single component that makes up the whole of his identity and his being.

It is easy to allow a chronic illness rob you of your life especially when suffering with a life altering illness like fibromyalgia.  Fibromyalgia seeks to demand our constant attention since we must manage metamorphasizing symptoms that change character, severity, and location every hour of each day.  Fibromyalgia's chronic symptoms seek to erode our attitude and our quality of life, but that's only if we allow that to happen.  We are in control of our destiny despite the unexpected roadblocks that appear during this journey.  When we feel discouraged and our attitude is down in the dumps it is beneficial to discover how others are dealing with their roadblocks.  We may not be able to do what others our own age do, but we cannot give up our life for this roadblock called fibromyalgia.  This challenge seeks to find out what we are really made of and how tough we really are:  we are warriors.

The strategies in my toolbox are to avoid negative thoughts and situations that breed negative thoughts, focus my time on the things I really love to do, surround myself with positive people, and seek out the wisdom of others that suffer with a chronic illness.  I am interested in knowing what strategies you keep in your toolbox . . . .    Blessings to all you warriors as you go through each day!

Saturday, November 16, 2013

Anxiety . . . controlling a silent beast

Anxiety is a beast that is ever present in people's lives.  Anxiety is the energy that helps people perform on stage or give a speech.  It is the nagging anxiety that makes us pay our bills or complete other tasks such as taking a test.  There is a fine line between performing well and having "run away" anxiety that impairs performance or prevents us from completing tasks.  Excessively heightened anxiety can be a crippling force that leads to inability to make decisions and results in mental paralysis.  Anxiety in low doses is beneficial, but when this beast threatens to run our lives it is time to regain control.
As people age anxiety can become more problematic.  This is also true with chronic illness and fibromyalgia.  In addition to fibromyalgia, many of us have other chronic illnesses and are aging too.  Life challenges just keeping piling on top of one another.  Luckily we have tools in our tool chest that can help to keep anxiety corraled where it belongs so that it serves a useful function rather than becoming a destructive force.

Within us we have three components of ourselves that seek to govern our behavior: the child, the parent and the adult.  Each has an important role in our daily lives and each must be balanced with one another.  The fear and anxiety that becomes unmanageable lies within the realm of the child.  That child needs a comforting parent and an adult that is in charge to provide stability to a fearful and anxious child.  Whenever I feel anxious about a coming event or activity that will require physical energy that I may not have or emotional events that will require emotional energy, I look to my parent and adult to take charge.  As anxiety begins to well up my adult tells me it will be alright and my parent tells me that I am safe.  That simple act of self-talk gets that anxiety back under control.  I allow the adult to take over to do the planning and I look to the parent to set boundaries and limits for me so I am better able to balance activity and rest.  This is a simplistic view of this complex interaction that operates within our minds, but it works.  The adult part knows how to ask for help and keep anxiety within tolerable levels when I need it; that leaves the playful child carefree to have a good time.

Positive self-talk is a powerful tool that we carry with us every day.  When anxiety begins to well up inside, call upon your parent and adult to provide solice, safety and action that your child is unable to handle.  Tell yourself that you are going to be okay.  For some people this self-talk takes the form of a prayer, and that higher power or God provides the solice and safety that is sought.  Give yourself permission to rest when you need it and to delegate tasks to others that will give you help.  Balance in your life is important in every aspect.  I use self-talk every day to help me keep my life balanced and to cope with the challenges I face each day.  That simple act allows me to feel more carefree, safe and able to find humor in each day so I can enjoy my inner child to its fullest.  Blessings to you as you keep that fun loving inner child safe within you!

Monday, November 11, 2013

Stealthy stress is ready to pounce!

Well, here we go again.  Here come the holidays and I am already somewhat dreading the season, because I'm not sure how I'm going to be able to keep up with the demands.  I don't know about you, but I have read all the articles about how to manage holiday stressors.  The suggestions are simple, obvious and probably won't work very well.  Let's face it, the holiday season is chock full of stressors and people with fibromyalgia can expect a major flare this time of year.  I love getting together with people, but it just zaps my energy and when my energy gets zapped all the other fibromyalgia symptoms begin to flare.  I know from experience that pacing activities and socialization, and balancing that with rest is critical to avoid that inevitable flare.  Two weeks before Thanksgiving I begin to fret about the thought of what I must accomplish between now and December 25th and I don't know how I'm going to make it.  But I do have my strategies and these strategies have not appeared on any of the holiday stress reduction lists I have read over the years.

The first problem to be solved is the expectation that the holidays are going to be magical and perfect.  Once I got that thought out of my head I instantly felt better!  I am hosting Thanksgiving this year and I'm not going to have a big crowd; there will be six of us.  But in the scheme of things that's probably 5 too many.  So the way I'm getting around pushing myself over the edge is to ask for help from everyone that is coming to dinner.  My good girlfriend of 41 years and her husband are coming from out of town.  They will be staying with us for 4 days and I couldn't be happier.  They are very low maintenance people and they are always willing to pitch in.  I also have a couple of other girlfriends coming and they are ready to bring sides and do some cooking and serving.  A little wine in the mix should help too!  So it will be busy, but I can pace myself better with all the help.  So that's my first strategy . . . ask for help ahead of time.  As usual I want to serve a whole bunch of food and then I think, "How much food can six people eat anyway???!"  So as fast as the list of sides and appetizers grows, I start cutting out some of the more complicated dishes I planned to serve.  My second strategy is to keep it simple.  No one is going to starve.  The house doesn't need to be perfect, because no one notices that anyway.  So my third strategy is to only invite low maintenance people.  My fourth strategy is to do as much preparation as possible before Thanksgiving Day, which is one of those "no-brainer" strategies.  My fifth strategy is to remember to breathe.  And my sixth and final strategy is to put my feet up and direct activities from a prone position if necessary.

For Christmas my strategies are simple:  downsize and keep it simple.  I am downsizing the number of cards I send, the people that are getting gifts, and the number of decorations I put up.  I have found the older I get the more important it is to save my energy to just get together with friends and family that are dear to me and are low maintenance too.  The holidays are frequently stressful due to dysfunctional relationships among the people that get together.  I know what pushes my buttons and which relationships are not good ones.  Life is too short and there aren't that many holidays left in my life to purposely sabbotage my good time by letting those people into my daily life or even for the holidays.  So regarding relationships and preparation for the holidays it's important to know exactly what the priorities are and then stay the course.  The result is a happy, satisfying holiday and little to no fibromyalgia flare.

So much has been written about stress resulting in a diluted connotation due to its overuse.  People casually state that they are so stressed out and many times it's about insignificant life events.  Stress is actually a deadly mechanism that can shorten one's life and it diminishes quality of life.  Stress causes increases in blood pressure, inflammation flare ups that can result in plaque build up in the coronary arteries, elevated cholesterol, adrenal gland fatigue, rosacea flare ups, chronic disease exacerbations, destruction of interpersonal relationships, increases in anxiety and depression and many other untoward effects.  Setting yourself up for lots of stress is self-sabbotage, which interferes with happiness.

I intend to keep the chaos out and the relaxation in.  I am making lasagne ahead of time and putting it in the freezer so my out-of-town guests will be well-fed with little stress for me.  I may go to Papa Murphy's and grab a fresh pizza to stick in the oven . . . they even have prepared salads and desert too!  Sounds like a good plan to me.  During this holiday season I am going to be number one so I can emerge from the holidays happy and unscathed with good pictures to remember time with my good friends and family.  I hope your holidays are good for you too.  It's all about the plan and the intention behind the plan.  Blessings to you this holiday season!

Wednesday, October 16, 2013

The anatomy of hope . . .

What gets you out of bed every morning and gives you enough energy to make it through the day ever since the day you were born?  What feeds your spirit so you make plans for the future, go grocery shopping, plan your next meal, and face the adversity that every day holds for you?  In spite of the difficulties that you face each day, what is it that makes you fall in love again, adopt a pet or plan a vacation?  To feel a whole array of emotions each day, including pain and anguish and yet get on your feet again and move forward takes energy that hardly exists for people with fibromyalgia, but you do that day after day.  That miraculous spirit that resides within us all is hope.  When hope ceases to exist we no longer have the energy to move forward in life and that leads to stagnation and a downward spiral.  Hope is a critical energy force that we cannot survive without and hope must be guarded carefully or our life force and spirit will begin to fade.

Many people don't spend much time thinking about hope until they are faced with life changing events that put their coping skills to the test.  Anyone that has lived to 90 years old understands this concept only too well, because sooner or later everyone loses physical abilities and energy, and most likely they don't feel well either.  Since hope is critical to survival it is one of those innate components of our spirit, but as we face more and more difficult life challenges hope can begin to dwindle and fade.

Taking good care of our spirit and the hope that feeds it is an essential activity every day.  Cultivating an optimistic outlook requires a commitment to problem solving and the belief that defeat is not an option.  We may have some temporary set backs, but we must have the fortitude to never stop moving forward.  When you have a temporary set back rely on help from your family or friends to get you back on your feet again.  I have found inspiration from perfect strangers that are willing to share their stories about overcoming obstacles in their life.  These stories are meant to give us emotional support rather than serve as a personal challenge to meet expectations of others.  The most powerful force in eroding hope is the feeling that we are alone and no one understands.  We are a gregarious people and we need each other.  Some people find solice and hope through their religion and their church.  Others find the renewal they need from nature.  We are all different in how we fullfill our common human needs.  Focusing on positive things in your day while minimizing the negative things provides a beneficial boost to hope.  The belief that we can overcome anything because we are fibro warriors gives us the energy to meet life challenges and preserves hope.  We cannot afford to allow negative thoughts to creep into our head -- that is counterproductive.  Avoid a victim mentality:  spending time blaming others for anything in our life leads to stagnation and a downward spiral.  Cultivate self-responsibility and accountability and you will feel empowered in your life.  Feeling as though you have no power or control over anything in your life leads to depression.  Find things in your day that bring you joy and enthusiasm for life.  When you smile, do it for yourself and not for other people.  When you smile you feel better.  Develop friendships with people that are happy, positive and have enthusiasm for life.  Their energy and spirit are contagious and will help you keep your spirits up too.  The mind is a powerful tool -- if you believe you can or if you believe you can't you're probably right.  Spending too much time complaining about the state of things can sabbotage your efforts to maintain a positive attitude and safe-guard hope.  It isn't beneficial to maintain relationships with people that bring you down.  You know who those people are because you can feel them sucking the energy out of you.  In addition, listen to your body and care for yourself.  When you have a flare, pamper yourself and don't fight it.  That doesn't mean giving in to it.  Make a conscious decision to do nothing but care for yourself.  You are number one, you know.  So know how to say "no" and look out for yourself.  You are the most important person to you.  And it's okay to cry sometimes.  Experiencing all of our emotions is important to emotional health.  It's what you do with those emotions that really counts.  If you find that you are crying more than smiling you may need to see your doctor and a counselor to treat depression and anxiety.  We are all able to be mentally strong, which doesn't mean that we don't need help from time to time.  Be sure that when you need help you ask for it.

Twenty years ago I lost hope.  I had a life altering injury with severe chronic pain.  I was in a chronic pain program and I was participating in a guided imagery meditation.  The meditation led me through a forest glen along a bubbling brook and then to a clearing that had opened up to a beach with a sea that ebbed and flowed up onto the beach and then retreated back again.  There was a treasure chest on the beach and when the chest was opened there was a beautiful glowing ball of light inside.  I reached into the chest and picked up the ball of light and rolled it over in my hands amazed at its beauty.  I suddently realized this beautiful ball of light was the hope that I had lost and it was now found.  That was twenty years ago and I still cry when I think of that moment.  That was the lowest point in my life; I never want to be in that place again.  So I spend every day mindfully guarding my hope and I do whatever it takes to keep that spirit alive and well.  My daily plan is to laugh a little more, to see humor all around me, to love more and to have empathy for others.  I am more aware when someone doesn't mean me well and I immediately cast those people out of my life.  It is also important to be kind with ourselves and others every day, because we are all dealing with life challenges.  Oh yes, I'm more forgiving too, because after all we are only human and that's a good thing to be.  Blessings and peace to you as you find hope every day and never ever give up!

Sunday, October 6, 2013

Coping with a chronic, invisible illness

I frequently read other fibromyalgia blogs and a recurring theme is the frustration that others don't understand this illness.  After all we don't look sick.  When I look in the mirror I see what others can't and I'm sure you do too.  And that's really okay, because do I really want to look sick?  I was talking to a friend of mine several days ago.  We had traveled up to Flagstaff together and the full day really exhausted me.  My friend stated that she was really tired after the day in Flagstaff and I attempted to explain how exhausted I was after the day, but that didn't turn out well.  She said to me, "Oh yeah.  Your tired is worse than my tired!"  I answered, "Yes it is."  She appeared to be completely annoyed with me.  I explained that people with fibromyalgia don't look sick and it's difficult for people that don't have this illness to understand the complete exhaustion we feel.  The reality is people that don't have fibromyalgia have no imagination for how ill we feel and how sick we are.  So once again I find myself resolving to never attempt to explain this to anyone that has not experienced this illness.  We are alone with this illness except for the support we give to each other and to ourselves.  We absolutely cannot count on our family and friends to understand this illness.  In fact, it turns them off.  After all, who wants to spend time with a sick person that incessantly complains they are sick?  Not very many people.

My strategy is to have a great deal of understanding for myself and my friends that suffer with a chronic, invisible illness.  The reality is if I want friends that are relatively healthy then I can't make a face and try to gain their sympathy.  I can't even try to gain their empathy; they aren't interested in giving me empathy.  My friends want to get together with me and have a good time and they don't want me to be a downer for them.  My husband doesn't want me to be a downer for him either and he's the closest person to me.  So, my resolve is to keep my misery to myself, but to care for myself every minute of every day.  That means when I'm unable to participate in an activity I just say "No".  I don't give a reason and I don't make excuses.  I just say "No thanks, but thanks for the invitation."  And when someone complains about how bad they feel or how tired they are I just snicker to myself and knowingly console them with the knowledge that they have no idea how tired and exhausted they could really be.

There is only so much we can do to educate those around us.  The reality is that if we persist in trying to get our friends, family and acquaintances to understand our illness the result is to just turn off everyone around us.  People in our culture like vibrant, young, articulate people.  I can't compete with that so instead I'm a good listener and people tend to appreciate that even more.  So I tell people that I have some deficits because I have fibromyalgia and then I let it go at that.  If they are really interested in me they will take the time and put forth the effort to find out what fibromyalgia is all about.  There is volumes of information available to people.  The truth is that the majority of people aren't really all that interested.  Since we cannot control those people around us we must just let it go and take care of ourselves.  I ask myself "How important are all those opinions anyway?"  Those opinions don't amount to a hill of beans.  There is only one opinion in the world that counts to me and that's my own opinion.  I frankly don't have the time or energy available to invest in someone else's ignorance.  So I happily go through my day and give myself the understanding I need about my ups and downs and I couldn't give a hoot about all those ignorant souls out there that just don't get it.  And it isn't a bad thing to put on a happy face, because we are just about as happy as we make up our minds to be regardless of our trials and tribulations.  Blessings to you as you go through each day with care and understanding for yourself!  Peace to you . . .

Wednesday, October 2, 2013

Fibromyalgia mystery may finally be solved

A good friend of mine shared this link with me that states the fibromyalgia mystery is finally solved.  How many times have our hopes resulted in sad disappointments?  It is my hope that the numerous A-V shunts that have been discovered in fibromyalgia patients will lead to treatments and possibly a cure.  The article only addresses pain and fatigue, which is just the tip of the iceberg so I am unsure of how other autonomic, sensory and motor nervous system symptoms come into play, but this is certainly worth reading and watching for follow up research articles.  Blessings to all of you as we search for the source of our illness!

Tuesday, October 1, 2013

Conquering the Pain

A zuni bear bracelet and matching earrings
Pain is quite a formidable foe.  It demands our constant attention, saps us of our energy, destroys our quality of life, turns us into grumpy people that no one wants to be around, and robs us of our life.  People with fibromyalgia have a daunting task to cope with pain that expresses itself as pins and needles, burning pain, sharp, shooting and stabbing pain, throbbing pain, body aches, dull aching pain, cramping pain, muscle pain, focal or global headache pain, pressure pain . . . have I described this accurately?  If you have fibromyalgia I'm sure you have additions to this list.  To sum it up it's total misery and fibromyalgia pain can prevent us from participating in activities that we enjoyed prior to the onset of this illness.  But never underestimate the power of the human mind.

Bead embroidery: a work in progress
The human mind has the capacity to overcome many obstacles regardless of how impossible those obstacles may seem.  The joy of learning is a key component for overcoming moderately severe or even severe pain.  This may sound too simple to be true, but it is.  People with fibromyalgia tend to be Type A personalities and that can actually work in our favor.  Challenges and learning something new exercises the brain and improves cognition to lessen the confusion, brain fog, and disorientation.  Learning when cognitive impairment is present requires a great deal of patience and determination, but as the brain engages in learning, cognition does improve.  Another component to overcoming fibromyalgia pain is fortitude.

My friend, Lori's, bead embroidery
A good friend of mine that has fibromyalgia and other chronic illness reminded me of how to overcome the pain and misery of fibromyalgia by introducing me to the world of beading.  I have found that beading gives me a creative outlet, provides me with social time each week with beading friends, and lessens my pain by engaging my brain with a new found passion.  I just love to look at all the beautiful beads and dream about what I can make with my beads.  The biggest problem with having a passion is having the sense to know when I need some rest.  Balancing activity with rest is the most important and beneficial tool that we can have in our fibromyalgia toolbox and it's a fine line between the two.  If we get too much rest we go downhill physically; if we get too much activity we go downhill physically.  It's quite a dilema and requires an astute balancing act, but with practice it becomes easier to know where that line is drawn. Balancing activity and rest is different for everyone and changes from day to day so no wonder this is a difficult task.

A set that I just finished this morning
If you want to lessen your pain and increase your activity, find your passion and balance your passion with other responsibilities and intentional rest periods.  You will feel better both physically and emotionally, you will increase your energy, and there will be more joy in your life.  Please send me comments about your passion and how that has helped you overcome the pain and other symptomatology related to fibromyalgia.  You may sleep better too!  Take good care and blessings to you as you face each day with fortitude, determination, and lots of patience
while you are discovering your passion!

Sunday, September 22, 2013

People with a chronic illness are at higher risk for Influenza

The Influenza vaccine has always been under fire.  For some reason the Influenza vaccine has been blamed for numerous maladies and most recently there is information on the Internet that reveals a government plot to "shorten our life span" and to "inject us all with a GPS tracking device".  I can tell you it is all bunk and it seems there is significant paranoia about the Flu vaccine.  That paranoia is a mystery to me.  I have worked many years in health care dedicating time to increase the number of people receiving Flu vaccine.  That effort involved work with the Centers for Disease Control in Atlanta, GA.  I supported hospital efforts to ensure that as many people as possible received Flu vaccine in my community.  Let me tell you what I know about Influenza and the vaccine that can save lives . . .

Influenza is a deadly viral disease that kills thousands of people around the world every year.  According to the Centers for Disease Control Influenza related deaths have been as high as 49,000 people in the U.S. in a single flu season.  Influenza is a respiratory illness that is accompanied by cough, high fever and severe body aches.  Many people call a simple upper respiratory illness the flu and also believe that GI disturbance with vomiting and diarrhea is the flu.  These illnesses are not the Flu.  Influenza is an airborn organism that cannot survive on inanimate objects for long.  If someone has coughed and you immediately get a droplet on your hand and then you touch your eyes, nose or mouth you can contract the Flu.  The fact that Influenaz is an airborn organism makes it easily transmitted to large numbers of people in a short amount of time.  Influenza mutates easily from year to year so it is able to cause illness in people even though Flu vaccine had been received the previous Flu season.  That's why it is important to get a Flu shot at the beginning of every Flu season.  There can be a number of different Influenza viruses circulating each Flu season.  The 1918 Influenza pandemic killed an estimated 30 to 50 million people worldwide.  The 1918 pandemic was caused by an Influenza virus that was different than others that simply mutate each year.  It is believed the next Influenza pandemic may be coming in the near future.  Influenza is a deadly respiratory illness.  So now that you know what Flu is and what it isn't, let me talk about some of the myths surrounding the Flu.

1918 Influenza Pandemic
Some people believe they have gotten sick after receiving a Flu shot.  Influenza vaccine absolutely cannot make you sick.  The injectable vaccine is a killed virus so it is inactive, and the nasal vaccine is attenuated or weakened so the viral load is too small and too weak to develop into an illness.  That cold you got the day after a Flu shot is simple coincidence.  It takes the common cold about 10 days incubation period to make you sick so you already had that illness when you got the Flu shot.  The other day I heard someone say they don't get a Flu shot because it doesn't protect you from all the Flu bugs that may be circulating in a flu season.  I would have found this logic amusing if it wasn't so self defeating and possibly deadly logic.  It takes 2 weeks to develop immunity after receiving a Flu shot.  The level of immunity to the selected Influenza strains can vary from year to year and may not be as effective in people that are older.  Three strains of Influenza are selected each year for the vaccine based on the likely strains to hit the U.S.  There may be other Flu strains circulating, but the good news is that if you received the Flu vaccine, you have at least some level of protection from contracting those strains and possibly dying in the process.  The whole point of getting a Flu shot is not to prevent you from getting the Flu, but to reduce the effect of the illness so it is milder and so you survive the illness.  Survival is the reason to get Influenza vaccine.  So if you are complaining that you got the Flu even though you had a Flu shot, it's good news.  About the paranoia that the government is trying to shorten our lives with the Flu vaccine . . . if the government wanted to shorten our lives, the government would withhold Flu vaccine and that would certainly do it.  In addition, for some reason or other people become hypervigilant about every ache and pain after receiving a Flu shot and they are always certain the Flu shot is to blame.  The only problem I have gotten from a Flu shot is a little sore upper arm for a day or so and that's it.

Influenza vaccine has caused deaths due to allergic reactions to a component in the vaccine; if you are allergic to any component of the Flu vaccine do not get a Flu shot.  An allergic reaction can be life threatening.  My advice to you is to take extra precautions not to be exposed to Flu during Flu season.  Avoid crowds, especially in the grocery store.  There are lots of sick people shopping for food in grocery stores.  Another thing you can do is encourage the people around you to get Flu vaccine each year.  People that have been vaccinated against Flu will not infect people around them.  And the more people that are vaccinated the more people are protected due to a phenomenon called "herd immunity".  If a certain portion of a population is vaccinated the rest of the population is protected.

In years past people at risk of contracting deadly Influenza were the very old, the very young and people with a chronic illness.  Due to the emergence of H1N1 everyone is now at risk.  I have seen Influenza kill a perfectly healthy 10 year old boy and modern medicine could do nothing to save him, but he would be alive today if he had received a Flu shot.  Influenza is a deadly respiratory disease.  People with Fibromyalgia are at higher risk of not surviving a bout of Influenza, plus if you get sick for the holidays you won't be having much fun!  So, get your Flu shot now.  I have had an annual Flu shot for the past 36 years and have not had a bout of Influenza since I started getting the vaccine.

So that's just a brief introduction to Influenza.  If you want more information, the best resource is the Centers for Disease Control at  The CDC is a wealth of information.  During this Flu season take good care and be well!  Blessings to you!!

Saturday, August 31, 2013

Fibromyalgia . . . the great mimic exposed

Florence Nightengale
It is surprising to me that Fibromyalgia has been documented in history for centuries and yet physicians today don't seem to be aware of this chronic illness that devastates lives.  There are biblical accounts of Job being stricken with a mysterious illness, and Florence Nightengale became bedridden from an illness she contracted during her Crimean War service (1854 -1856) and suffered with this illness until her death in 1910.  (  History of Fibromyalgia by Karen Lee Richards)  Both of them were thought to have had Fibromyalgia although a name for this illness wasn't coined until 1976.  Documentation of this illness was described in 1500 BC, so why isn't this illness better understood today?

The understanding of Fibromyalgia is rapidly growing today as researchers search for its origin and ultimately its treatment . . . and possibly a cure.  It wasn't long ago that fibromyalgia was recognized simply as a pain syndrome treated by rheumatologists.  Pressure points were identified to make the diagnosis, but the problem was that the pressure points changed from day to day.  Identifying pressure points is no longer the standard for diagnosis and it is now known that Fibromyalgia is a progressive neurological disease that mimics Multiple Sclerosis and Myasthenia Gravis.  Most Fibromyalgia information available in print and on the Internet still describe symptoms of chronic widespread pain, pressure points, fatigue and sleep disorders.  This description is less than adequate and ignores a multitude of symptoms that mimic other neurological disorders.  Today there are neurologists interested in research and treatment of Fibromyalgia and knowledge about this illness is leading to a better understanding.  Fibromyalgia is now being championed by neurology as Fibromyalgia symptoms are recognized as autonomic, muscular and sensory nervous system dysfunction.  This knowledge demonstrates Fibromyalgia's complexity, which is the reason Fibromyalgia has remained elusive until now.  Despite this understanding there are few neurologists that are up-to-date regarding this research.  When a patient presents with a myriad of seemingly unrelated symptoms it is still much easier to diagnose the patient with a mental disorder than an actual progressive neurological disorder that affects anywhere from 2% - 4% of the American population.

I have compiled a more complete list of symptoms and categorized these symptoms in three categories:  autonomic dysfunction, motor dysfunction and sensory dysfunction.  For those of you being treated by doctors with limited understanding of Fibromyalgia's neurological symptoms, you may want to copy this and use it as a tool for your next discussion.  If your doctor is threatened by this information it's a sign that you need a more knowledgeable doctor.

Autonomic Dysfunction
migraine or near migraine headaches
facial pain/facial pressure
burning, dry eyes
blurred vision that changes throughout the day
sensitivity to loud noises and odors
episodes of tunnel vision
night and day sweats not associated with menopause
body temperature dysregulation
irritable bowel/gastric paresis (early saiety, abdominal bloating, severe abdominal pain,
generalized claminess
hypotensive episodes throughout the day
severe nausea throughout the day
abdominal pain
chronic constipation/diarrhea
extreme fatigue/exhaustion
urinary incontinence
cardiac arrhythmias
hair loss
hearing loss
exercise intolerance
poor balance
widespread pain from head to toe, including joint pain
insomnia with unrestorative sleep
cognitive impairment (confusion, disorientation, dull feeling in head, short term memory loss, difficulty with word recall, impaired concentration)
neurotransmitter depletion
hormone dysfunction (low thyroid, estrogen, testosterone for age)
shortness of breath/air hunger with or without mild exertion
chemical sensitivities
sensitiviy to medications - need lower doses or inability to tolerate medications

Motor Dysfunction
generalized weakness
episodes of tremulousness
episodes of muscle fasciculations all over the body
muscle stiffness
hand muscle atrophy
hand and wrist weakness
dropping things frequently
muscle fatigue with mild exertion
stumbling and tripping when walking especially when fatigued
leg weakness - legs feel heavy and difficulty lifting legs
difficulty using hands to eat following meal preparation due to increased fatigue and pain
impaired fine motor control
difficulty swallowing
cramping pain in legs, feet, hands
restless leg syndrome (Willis-Ekbom Disease)

Sensory Dysfunction
paresthesias in all four extremities and trunk of body
numbness in fingers
numbness in feet
episodes of numbness in forearms and hands especially at night after sleeping
pins and needles in palms and bottom of feet
burning sensation in palms and bottom of feet
increased pain associated with pressure
inability to tolerate uncomfortable clothing (seams in clothing, scratchy fabrics,  bra, etc.)

Symptoms are worsened with any activity, socializing, infections (i.e., upper respiratory infection), any physical or emotion stress, lack of adequate emotional support and others.  This is by no means a complete list; this is a starter list.  I'm sure you can supplement this list or you may not be aware that you have some of these symptoms, because the tendency is to ignore symptoms in an attempt to cope with the misery you are in day after day.  When the motor symptoms begin you may explain them away by stating you are just "clumsy".  It isn't clumsiness; it's neurological dysfunction.

I have been largely absent from my blog as I have grappled with the reality that Fibromyalgia is a progressive neurological disease.  There are so many people struggling day after day with this illness without adequate professional support, and generally without emotional support from family and friends.  I have recently seen several neurologists to rule out other neurological diseases like Myasthenia Gravis and I currently have one more test that will be done: a hand EMG.  I am convinced at this point that I definitively have Fibromyalgia and so my difficult task is to find a neurologist that will treat me appropriately.  The Fibromyalgia journey would not be so difficult if there were
more informed and progressive thinking neurologists with an interest in Fibromyalgia.  The research is promising and the increased neurologist interest leaves me hopeful for us all.  The knowledge that Fibromyalgia is a neurological disease is very powerful tool for you to use as you advocate for yourself.  Knowledge is always power.  I don't know where you are in this journey, but it is my hope that I am able to give you at least a little emotional support.  There is nothing worse than being alone with a monster that seeks to rob you of your life.  Blessings to you as you travel along your path . . . as we travel along this path together.

Monday, July 29, 2013

Life is an adventure . . . don't miss a single moment!

A monsoon rain storm backlit by the sun
I was thinking about all the ups and downs in life and my tendency to categorize every life event as either a good experience or a bad experience.  The good experiences all share uplifting emotions and the bad experiences' commonality is uncomfortable emotional reactions.  In the process of categorizing my experiences I realized that I am actually missing half of my life's adventures.  When I discount any of those experiences that are attached to uncomfortable emotions, I have missed some of the most important moments of my life.  The mechanism that reinforces this tendency is cultural and familial too.  The culture in the U.S. has reinforced that we should be happy all of the time and families frequently lack the skills to effectively manage relationship conflicts.  This robs us of our experience.  Add dysfunctional family interactions and you have a recipe for disaster.  Have you noticed how many publications feature stories on how to be happy?  Happiness actually is a personal choice.  We are all in charge of our happiness, but what about all that interferrence that seeks to rain on our parade??  Wow, now that's a force to be reckoned with.  Add in chronic illness that is poorly understood and life experiences can be less than optimal.

A wildfire smoke plume over my house
I have found that when I embrace all of my experiences throughout the day and savor those experiences, I don't lose half my life experience to categories that fail to be beneficial.  Have you felt the heat of an angry emotion?  I don't stuff that away in hope of never finding it again.  I feel that heat and I don't make excuses for it.  I savor the power of that emotion, but I also make sure I direct the tremendous power of the emotion in the right place.  Sadness and grief are other emotions that are carefully stuffed away when that is part of our human experience.  We have the power to move our emotions around as though they are chess pieces in a game of life rather than experiencing every emotion as a part of our life adventure.  When all our life experiences become an integrated experience that is full of every emotional reaction available in our repetoire, our lives automatically become fuller and happier.

My desert willow in bloom
Do you have relationships that are less than optimal for your emotional health??  I'm thinking that we all do.  So the question is "What do you want to do with those relationships?"  Some people in our lives prefer to conjure up those "hot" emotions to push our emotional balance off kilter.  Those people can be so toxic to our life experience and we are in charge of giving them that power.  When people in our lives attempt to rob us of our full emotional experience that provides a balance in our lives, it is probably time to rethink those relationships.  It really is not part of the plan for us to be experiencing one set of emotions over another set.  Relationships that focus us on anger, low self worth, jealousy, envy and other emotions in that "hot" zone are probably not the best relationships to help us maintain our emotional balance.  My tactic is to either limit exposure to those people or to eliminate those people from my life experience.  They don't get to take part in my life adventure.  And when I do eliminate those people from my life, I am always vigilant and on the lookout for those people to sneak back in.  The most frequent way those people try to sneak back in is when I think about those people and their previous behaviors.  I do it to myself!!  Amazing, huh?  It's important to really close the door so those people can't get back in.  Don't give those people power no matter who they are.  These people are lurking everywhere . . . in a doctor's office, in a store, or in our own homes.  They are family, friends and acquaintances.  Not everyone means us well and it's good to know who those people are.

Don't forget to listen . . .
When I begin to wrestle with an emotion I think about the mechanism that sustains those feelings and I make decisions about what I want to do with the information I have.  When I resolve a nagging emotion I feel so much better and I feel liberated, but I don't discount the experience or push it away.  After all it's part of my total experience and I don't want to miss a single moment!  Blessings to you as you savor every life experience and the power of the emotions that are connected to that experience, and enjoy your total life adventure . . .

Tuesday, June 25, 2013

The Quest for Competent Medical Care

Having worked in the medical field I have seen quite a contrast in care over the years.  My experience growing up and then the early years working in heathcare gave me a foundation that was formulated on a gold standard.  I didn't know that at the time, but the last twenty years searching for competent medical care for my illness has been a stark contrast in the gold standard that was so familiar to me.  My experience in healthcare process improvement and the investigations that I did in uncovering the root cause of an error or "near miss" has also created frustration for me as I search for competent healthcare providers.  Too often I have seen healthcare providers that are so arrogant they are literally drowning in their own image.  Their approach to providing care is to apply another bandaid that only serves to hide the true nature of an illness and prevent its identification.   Yesterday I saw the doctor that I chose for my primary care doctor here in Prescott and it was an exercise in frustration and futility.  Medical assistants at the clinic are documenting in patients' legal medical record without a clue of the seriousness their documentation has for the welfare of the patients that seek care.  The doctor was quite offended when I suggested that he should be pulling all the information about me together to determine an accurate diagnosis.  The doctor was also quite offended when I expected that after three weeks the referral to Barrow Neurological Institute should be completed and that I should be contacted about the status of that referral since it has been 3 weeks since my last office visit.  It seems that the most common complaint patients have today is the lack of follow through by doctors.  The neurologist that evaluated me promised to document my symptoms carefully to make sure I would be able to see the specialists at Barrow.  That has not happened.  When there is no follow through, there is no care.  And so I find myself at a seemingly dead end.  But as Sid would say, this is no hill for a climber.  I'm sure you can relate to what I am saying and that you too have had many hills to climb and the steeper those hills become the harder you climb.  It is alarming to me when I witness the cavalier approach that many doctors have when establishing a diagnosis.  And patients are all too happy to accept that diagnosis, because if you have a disease that is hard to diagnose you will accept any diagnosis just to have one that will validate the years of illness, misery, despair and grief that you have suffered.  That's true . . . this will afford some measure of satisfaction just to have a diagnosis.  Any diagnosis will do!  But that is a false sense of security, because the wrong diagnosis may seem a frivolous detail, but it may mean your short term demise in the end.  It is important to be aware of the nuances in your declining health, because that may mean the difference between competent care and sheer incompetence.

So as I put this warning out to you all, I find myself once more looking forward to meeting my newest healthcare provider tomorrow as I close in on the true nature of this illness that plagues me every day.  I am once again hopeful that this will be the ultimate key to open the door that is labeled "Please come in!  Competent and compassionate medical care inside."  I am hopeful once again that I will learn the true nature of this illness and yet I am fearful that I may learn it is a genetic disease that may possibly plague my entire family on one level or another.  I believe this is a strong possibility.

I have been absent from my blog as I struggle to make sense of things and try to secure the care I need to once again thrive in spite of an illness that threatens my quality of life and my sheer survival.  I know that many others are walking in my shoes or I in theirs.  We are trekking together in uncharted wilderness that isn't uncharted at all, because so many have come before us.  It is almost like a rite of passage that we only attain as long as we continue to strive for truth and don't readily accept the label that is placed on us by a doctor that has limited knowledge.  If the diagnosis you are given doesn't quite fit for you, don't hesitate to ask questions and seek answers from other healthcare professionals.  Don't be afraid to question the illogical conclusions that are presented to you.

I am hoping you arrive at your desired destination wherever that may be.  Some people need to reside in a place of comfort regardless of whether that place is just a mirage.  That's okay if you prefer that destination.  But if that place does not feel comfortable to you, challenge the status quo regardless of whether that makes others uncomfortable.  You owe that to yourself.  Blessings to you as you search for that place of comfort and the final destination that you desire!

Wednesday, May 29, 2013

A Warrior Spirit Challenged

Claw marks on the Aspen tree
I am always interested in wildlife that resides around my house.  After moving in our new home I have heard stories about the resident mountain lions seen in the neighborhood.  I have kept a diligent and watchful eye for signs that these big cats have visited the area surrounding my home.  About one month ago I noticed that the Aspen tree growing next to the corner of my house in the front had been vigorously marked by a cougar.  I knew it had to be a large cat, because the claw marks on the tree spanned a foot to one and a half feet in length and were placed about two to three feet up on the tree.  The claw marks are too high and too deep to have been a bobcat.  It was at this point that I decided to carry a firearm outside at night when taking my dog, Gabbie, out for her final potty break.  My firearm of choice was a 38 Special revolver with six chambers to hold six opportunities to hit the target.  My flashlight of choice was a small Surefire with a powerful 500 lumens that has the capability to turn night instantly into day.  I felt very well prepared for a mountain lion encounter.

A mountain lion similar to the one I saw in the back of my house
Well, the night before last I had an opportunity to use my skills.  In preparation to retire for the evening I grabbed the trusty flashlight in my left hand, the 38 Special in my right and escorted Gabbie out to the back courtyard.  My routine is to immediately scan the boulders behind the courtyard with my flashlight.  It has become such a routine that I was surprised (only for an instant) when I observed a full grown mountain lion staring back at me just a short 35 feet away from where I stood.  Every night I go through this same routine and I know what I'm looking for, but I never expected to actually see a mountain lion staring back at me.  In that moment my preparation flew right out the window, I grabbed Gabbie by the scruff and ran back into the house.  I wasn't in the mood to fight it out with a big cat if I could avoid the encounter.

A floribunda rose in my garden
I don't know about you, but since I have been fighting a chronic illness I feel much more physically vulnerable.  I always felt strong and able to tackle anything that came my way.  When I was faced with this mountain lion my hands, wrists and arms were so painful and I didn't even think I could fire a shot from the 38 Special in my right hand.  I felt weak and somewhat fragile and very vulnerable in the face of this exceptionally equipped predator.  I have a warrior spirit to fight this chronic disease every day, but I don't even begin to resemble a physical warrior.  It's a humbling experience to become the prey of an efficient hunter.  I would like to think I'm tough enough to accept a physical challenge, but the reality is I'm only tough in spirit.  One out of two ain't bad, aye?  May your warrior spirit carry you through the majority of life's challenges!  Blessings to you . . .

Monday, May 27, 2013

A Chronic Disease Marches On

A Desert Willow in my back courtyard
Well, I have to say that the last few months have certainly been challenging and have left me a bit under the weather.  Establishing a new residence complete with new healthcare providers can seem to be a daunting task when living with a chronic and poorly understood illness.  I fortunately have an enthusiastic Internal Medicine doctor that has the energy and determination to find out if there is a neuromuscular disease hiding in the shadows.  The other day I had an EMG to rule out Myasthenia Gravis.  For those of you that have experienced an EMG you understand how demanding this test can be.  This was my third and the neurologist conducting this test suggested that Barrow Neurological Institute may want to do their own EMG.  My reply to that suggestion was, "I hope not!"  The EMG was negative again and the neurologist exclaimed that I don't have any neuromuscular disease.  I asked her, "What about the muscle wasting I have?  How do you explain that?"  The neurologist asked me, "What muscle wasting?"  I was amazed that despite the information I had given the neurologist, she had failed to integrate this information into her exam and she had failed to note the many muscles in all four of my extremities that are demonstrating atrophy.  I left the neurologist's office feeling once again as though I had been discounted.  Once a label is attached to a medical record it is very difficult to change a physician's minds.  Fibromyalgia can be a diagnosis of convenience for a doctor that has limited knowledge about the difficult-to-diagnose neuromuscular diseases.  Whenever I am uncomfortable with answers to a problem, I continue to dig for more information until I am satisfied with a final answer.  My symptoms continue to evolve and since this move I have noticed that the muscle wasting in my feet, ankles, lower legs, hands, wrists and forearms has accelerated at an alarming rate.  The first time muscle wasting was noticed was about 8 years ago by a hand therapist following a right hand injury.   This symptom has been conveniently ignored by doctors I have seen as they focus on diagnostic testing results rather than clinical judgement.
A Penstemmon in my back courtyard in front of a quartz boulder

I have continued to look for answers myself and I now believe I have a muscular dystrophy that is an autosomal dominant disease that was passed on by my mother.  My mother was diagnosed about 36 years ago with myositis, but she failed to follow up with a neurologist.  I am much more ill than my mother, which is typical for the autosomal dominant disease that I suspect I have; I don't believe my mother has myositis.  The autosomal dominance of the suspected disease gave me a 50% chance of genetically having this disease, which is also true for my twin sister.  If I have this disease then she too has this disease too, because it is inherited.  This disease expresses itself differently in every person, which is true of many neuromuscular diseases.  So tomorrow I will call the neurologist that did the EMG and request a referral to the muscular dystrophy clinic at Barrow Neurological Institute in Phoenix, Arizona.  They will be able to definitively diagnose this illness that has seriously plagued me for the last 20 years.

A blooming cactus in my kitchen
My message to all of you is that it is critical for you to monitor your own symptoms and to report any new symptoms to your doctor whether that be your primary doctor or your specialist -- rheumatology or  neurology.  Keep a journal of your symptoms that includes the date of onset, the character of the symptoms and any changes that you may observe.  It is difficult for you to recognize your own symptoms, because denial plays a big role in ignoring the symptoms that define your disease.  Be sure to reflect on your parents and any symptoms that they may have had that can be linked to your symptoms.  You may not have fibromyalgia . . . fibromyalgia may just be a diagnosis of convenience for the healthcare professionals that are responsible for your well being.  Blessings to you as you keep your sense of humor through this most difficult of life journeys!

Wednesday, May 1, 2013

Advocating for yourself with complex, chronic illness PART 3 - Sharing a common language

In healthcare the number one reason that an error is made is a breakdown in communication.  My personal experience with the English language has led me to the conclusion that the English language was not designed for effective communication.  In reality communication is a complex process and each person has their own unique style, but in healthcare, communication is critical because your life and health depends on accurate communication among an entire team.  Healthcare improvement efforts have focused on standardizing healthcare team member communication.  But patients and families have rarely been included in these improvement efforts.  Since we are the pilots of our healthcare team it is key that we have the communication skills to direct that team.  Effective, consistent communication begins with speaking the same language.  Healthcare has its own language that is confusing even among the healthcare professionals that speak the language.  There are multiple terms that have the same meaning and confusing abbreviations are used, which can easily be misconstrued.  In addition, doctors are constantly multitasking and team communications are frequently cut short to save time.  In essence healthcare team members are expected to be able to read a doctor's mind and that spills over to the rest of the team.  Have you ever seen a symphony orchestra play?  The conductor leads a large team of musicians that are reading music on the page -- a common language and the result is beautiful and inspiring.  Those musicians received years of training to be able to read that music accurately and even then a conductor still leads that team to keep all those members in sync.  Imagine if that orchestra was playing without the music or each musician was playing a different song.  That would result in a cacophony of sound.  The result would be a disaster.  The same is true in healthcare.  Our ability to accurately communicate depends on a common understanding of the definitions, which results in everyone "playing the same song".  For example, one doctor I had "hired" to copilot with me stated that it was important that we partner in my care.  I was in full agreement with that concept.  Being an Integrative Medicine doctor she prescribed accupuncture, an elimination diet, meditation, biofeedback and other alternative treatments.  I explained to the doctor that I have fibromyalgia and I needed help managing my symptoms.  She agreed that she would be working with me to provide treatment for all my symptoms.  I saw this doctor for 9 months and it became more and more clear with each office visit that there was a disconnect.  Despite my pain ratings of 8 out of 10 the doctor never addressed my pain.  The doctor didn't want to know how the elimination diet was working or if any of the other treatment modalities had improved my symptoms.  The disconnect appeared to be related to a lack of a common definition of partnering.  The doctor's definition was that partnering meant I would be on my own regarding the diet, accupuncture, biofeedback, etc. and the doctor would be managing hormone replacement.  My definition of partnering was that the doctor and I would be working together as a team to determine if I have fibromyalgia, to alleviate pain and other symptoms, and to discuss the effectiveness of the prescribed treatment modalities (accupuncture, biofeedback, elimination diet, etc.).  The result was disasterous.  I ultimately had to find another doctor and my care and treatment had been delayed.  In addition, I had not received any help with pain management and I had spent a great deal of money on treatments that weren't being directed and evaluated by a doctor.  If the doctor and I had initially discussed the definition of partnering it would have been evident that this doctor was not going to be providing the care that I needed.  When definitions are not agreed upon assumptions are made, which lead to misunderstandings, delays in care and errors in care.

If your doctor isn't addressing your healthcare concerns it is a sign you are not speaking the same language.  You may need to backtrack, and review and discuss your treatment goals to clarify any miscommunication.  Many times patients fail to communicate in a direct way with their doctor or don't share their thoughts, which results in incomplete communication.  Be sure to share all your concerns with your doctor, including how you feel about the care you are receiving.  In an effort to improve healthcare team communications, the SBAR model of communications was adopted by healthcare teams across the U.S.  The acronym SBAR represents Situation - Background - Assessment - Recommendation.  Using the SBAR communication model has made healthcare team communication more effective and efficient, which has reduce miscommunication among team members and reduced the number of possible errors.  But the disconnect in this model has been the lack of patient involvement.  As the pilot of the team, optimal communication among the patient and the healthcare team would include educating patients on the best way to communicate with their healthcare providers.

When talking with any member of your healthcare team, begin by describing your chief complaint, including a brief description of the problem or Situation.  This will set the stage for effective and accurate communication by putting everyone involved "on the same page".  Next you need to describe more detail about the problem or Situation, which provides the Background information.  Share your Assessment of the Situation with your healthcare team so they know what you are thinking about your primary problem.  The last step is to share your own Recommendation for this problem.  Using this model will put your entire healthcare in sync with what you are thinking and your personal healthcare goals related to the problem or chief complaint.  For example, I recently saw a neurologist for the first time.  I started by briefly describing my Situation - I have been sick for 20 years and doctors have not been able to definitively identify an accurate diagnosis.  Next I described the Background, which is the data piece of this communication model - I had prepared a chronicled timeline of symptom onset which I shared, briefly described some of the diagnoses I had received from doctors, diagnostics that had been done with the results, and described the most current symptoms that I am experiencing.  I then moved to my Assessment of the problem, which included my thoughts on a possible neuromuscular disease and the fact that I'm not "just depressed".  At this point the doctor moved directly to the Recommendation phase of this communication model.  The neurologist stated that she needs to accurately document my illness, create a baseline of information by ordering diagnostic tests, and then refer me to a neuromuscular specialist to definitively diagnose my illness in the case that she was unable to come to a definitive diagnosis.  The communication model worked like a charm.  The doctor automatically recognized the structure of this model and moved from asking more questions to add to Background data, to her Assessment about a possible diagnosis, and then to her Recommendation.  If any of the communication between you and your doctor seems confusing, stop the communication and ask your doctor to clarify what you think you heard.  Whenever you have a doubt about the communication accuracy it is critical to stop the communication process.  This doubt is what keeps you safer and prevents medical errors from occurring.  Always ask for clarification.

Prior to your doctor's visit sit down and write out your thoughts about your healthcare problem using the SBAR communication model.  It takes some practice to become familiar using this model, but the result is sharing a common language using a common communication model and developing a common understanding.  Blessings to you as you effectively, accurately and safely navigate the complex world of healthcare!

Saturday, April 27, 2013

Life is fragile . . . enjoy the time you have.

My beautiful Hootie
Life is so full of unexpected events and life is so fragile.  Last Tuesday I lost my robust and full of life kitty, Hootie.  I am grief stricken and so sad.  He was a gentle soul and he followed me around the house and out in the yard just like a good dog would.  Wills is grieving too and he misses his buddy that was always more adventurous and led the way with Wills 10 steps behind.  But is was Hootie's adventurous spirit that may have hastened his demise.  Hootie was outside with Wills and Gabbie and when they came in the house Hootie was full of dust.  He like to take dust baths in the loose Arizona mountain soil during this dry season so I didn't think anything of it.  Sid said that Hootie didn't look right and the fur around his mouth was wet.  I took Hootie outside to brush him off and check him over, but he ran away from me not wanting to be bothered.  I didn't chase him since I always give my cats their own control and I assumed he would be back on the porch within a few minutes.  But Hootie never came home.  I am thinking that he may have been stung by a scorpion and possibly went into convulsions and then died, although I haven't seen any scorpions around the house inside or out.  I will never know for sure.  It seemed logical that Wills, who is older and appears more frail and thin, would have been gone before Hootie.  It seemed that Gabbie would have been next since she is losing her eyesight to cataracts and lost her hearing at least a year ago.  But life frequently doesn't follow my logic and the orderly fashion I have designed.  That's when I am completely surprised by life events and I think, "But that's not the way I had planned it."

My precious Wills
Whenever life is snatched from those we love we try to make sense of it and think that if only we would have done something different the outcome would have been different too.  It's only human to believe that we actually have that much power.  The fact is we are quite powerless in many aspects of life.  The only power we have is the small amount of power we have to make decisions about our own life and about the attitude we choose to have.  That's all.  That's pretty darned pathetic when I think about it.  I like to think I have so much power over myself, but as I write my body is continuing to decline, which is actually true of us all.  Some maybe decline faster than others, but after age 20 our bodies begin their decline no matter what we do.  So the purest sense of power lies in our attitude and the manner in which we choose to live life.  It is important to me to live my life with courage and enthusiasm.  I have grieved my loss for several days, but then it is time to pick myself up and begin moving forward again.  Moving backwards or remaining stagnant is not my style.  I appreciate the time I have or have had with family, friends and all the living things that come into my life.  No matter how much time I have or how fleeting it may be, I am grateful and I let go of any personal agenda to control that time I have.  In that way my time is pure and it is quality time that allows each life the liberty that life deserves -- no controls, no possession, just being and enjoying each breath.

Cute Gabbie
I miss my little Hootie and I know I will miss him for a long time.  But I also know how important it is to let go and allow life to follow its own path rather than try to force a path that I have chosen.  Grief and stress are difficult, especially when dealing with a chronic illness.  Grief and stress always cause our symptoms to flare so it is important to manage and minimize the effect these two necessary and yet destructive forces can have.  We are survivors and we are warriors.  We have resilience and determination.  We may fall, but we always get up again.  I want to share a favorite poem.  I have enjoyed the spirit of this poem since I was in my 20's.

Edmund Vance Cooke
How Did You Die?     by Edmund Vance Cooke  (Born June 5, 1866; died December 18, 1932)

Did you tackle that trouble that came your way
   With a resolute heart and cheerful?
Or hide your face from the light of day
   With a craven soul and fearful?
Oh, a trouble's a ton, or a trouble's an ounce,
   Or a trouble is what you make it.
And it isn't the fact that you're hurt that counts,
   But only how did you take it?

You are beaten to earth?  Well, well, what's that?
   Come up with a smiling face.
It's nothing against you to fall down flat,
   But to lie there -- that's disgrace.
The harder you're thrown, why the higher you bounce;
   Be proud of your blackened eye!
It isn't the fact that you're licked that counts:
   It's how did you fight and why?

And though you be done to death, what then?
   If you battled the best you could;
If you played your part in the world of men,
   Why, the Critic will call it good.
Death comes with a crawl, or comes with a pounce,
   And whether he's slow or spry,
It isn't the fact that you're dead that counts,
   But only, how did you die?

From 101 Famous Poems, Contemporary Books, Inc, copyright 1958, pg 44.

Blessings to my beautiful kitty, Hootie, and blessings to you as you face all the unexpected events that life has to offer.  Life is so fragile and every moment is a gift!