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 www.cdc.gov.  The CDC is a wealth of information.  During this Flu season take good care and be well!  Blessings to you!!

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.  (healthcentral.com  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
photophobia
sensitivity to loud noises and odors
episodes of tunnel vision
chills
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
tinnitus
hearing loss
exercise intolerance
malaise
dizziness
lightheadedness
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
depression/anxiety
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.

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 . . .

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!

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 . . .

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!

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!

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!

In the Darkness of Night . . .

In the darkness of night I walk alone --
  I hear the night winds as they howl and they moan.
And on and on the winds howl and they moan.

I have no control as I search for some sleep
   and the restlessness over my body does creep.
And I search for my sanity and for some sleep!

I look out into the void of the dark,
  but the images I see are really quite stark.
And all that I see is the void of the dark.


As the night slips away to yield darkness to dawn
   I pace and I prowl across the dew laden lawn.
And I pace and I prowl 'till the light's early dawn.

As night turns to day I know night will return
   and that is the time again I will yearn
For sleep that evades me . . . I continue to yearn.

As night falls again that feeling appears
   and the night drags along into years and more years.
And that feeling creeps into years and more years.


Although it appears that alone I do pace
  while "It" creeps and crawls all over the place!
I know that alone I never do pace.

There are others that fight this battle not won
  from first hint of dusk until the first light of sun.
This is a battle that cannot be won.

A flicker of light in the east does appear
   and heralds the day and dissolves all the fear
As sunlight dances away all the fear.

And "yes" I'm still here!


My earliest recollection of WED/RLS was in my childhood, but the symptoms didn't start in earnest until 20 years ago following an injury.  I have actively fought nightly with this disease for the last 20 years.  Blessings to you as you walk alone through the night!

Willis-Ekbom Disease (RLS) Nightwalkers beware of MSG!

The Willis-Ekbom Disease Foundation is an excellent resource for anyone experiencing the symptoms associated with this disease.  Formerly known as the Restless Leg Syndrome Foundation, the Foundation has officially changed their name to reflect the seriousness and more global symptoms people frequently experience with this disease.  The WED Foundation distributes their quarterly publication to their members, which always contains valuable, cutting edge information.  The WED Fountation also conducts Webinars that are open to their members.


In the WED Foundation Winter 2013 edition of "Nightwalkers -- In search of a good night's sleep" there is an article titled "Can MSG Affect WED/RLS?" authored by Norma G. Cuellar DSN, RN, FAAN, Professor, Capstone College of Nursing, University of Alabama.  In this article Professor Cuellar discusses the hazards of MSG, which most often can be found in Chinese food and in processed foods.  According to Professor Cuellar MSG contains the salt of glutamic acid, which is naturally found in many foods such as vegetables and seaweed.  It is possible to develop glutamic acid toxicity if too much MSG is consumed; the body also has the ability to produce glutamic acid.  In addition, MSG has been known to cause allergic reactions that include skin reactions, headaches, dizziness or more serious reactions such as irregular heart rhythms, seizures and depression.  Professor Cuellar goes on to say that "MSG has been associated with cognitive disorders, endocrine dysfunction, migraine headaches, attention deficit hyperactivity disorder, Alzheimer's disease, autism, obesity, addiction, and sleep disordered breathing."  Food manufacturers are required to list MSG in the ingredients list on packaging labels so be sure to read the labels.  MSG continues to be added to processed foods and Chinese food despite the evidence that this food additive can be detrimental to your health.

MSG intake has additional health implications for those of us that are 'Nightwalkers'.  Glutamic acid is a neurotransmitter that may impact dopamine metabolism; dopamine is linked to WED/RLS symptoms.  A number of studies have demonstrated losses of dopamine in the brain following the intake of MSG.  There are currently no studies that have included WED patients so there is no research supported evidence that MSG affects WED symptoms, but some patients have reported improvement in their symptoms after eliminating MSG from their diet.

MSG is a food additive that has long been known for adverse effects therefore it is beneficial for everyone to avoid processed foods containing MSG.  But for those people that are the 'Nightwalkers' the implications are even greater.  To be informed about the latest information about WED, join the Willis-Ekbom Foundation and get connected to a community of people that provide support to one another and provide leadership for cutting edge WED/RLS research.  Blessings to you as you search for a good night's sleep!


Cuellar, Norma G., DSN, RN, FAAN, Professor, Capstone College of Nursing, University of Alabama. Winter, 2013.  Nightwalkers -- In search of a good night's sleep, pg 9.