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.

Owee Kazowee . . . It's a pain!

Arizona sunset in my front yard

I read a number of blogs and a frequent theme is related to pain and pain management.  Why wouldn't it be?  Pain, whether it is acute or chronic, is always in your face every day no matter how much you try to ignore it.  Many of us use a combination of pain medications throughout the day and night in an attempt to manage our pain, but new findings have demonstrated that using these medications are actually counterproductive.  Long-term narcotic use actually magnifies any pain you may have anywhere in your body.  (Jaret, Peter.  2013, April, AARP Bulletin, Fighting Pain, pg. 10 - 12).  I suspected there was a rebound effect from pain medication use, because I experienced this first hand after using Vicodin for only a short period of time.  Prescription opioid pain medications are now the leading cause of drug overdose deaths in America.  Despite decades of research on how to manage acute and chronic pain there still are no easy answers.  Most pain management clinics are now weaning chronic pain patients off their opioid medications and replacing those medications with a variety of strategies to manage their daily pain.  I use my pain medications judiciously, but I am personally terrified of the thought that I would have no access to pain medication.  I've been there, done that and it didn't really work all that well.  Managing pain every day throughout the day and night is already a full time job.  I can't possibly spend the entire day meditating in an effort to control my pain.  That was the suggestion I received from a pain program I attended 20 years ago.  The reality is that opioid pain medication won't eliminate pain completely and so a number of strategies must be used to get through each day.  For me, balancing pain management strategies with sensible pain medication use currently seems to be the best approach.

A javelina at my bird feeder!

It's a mistake to take larger and larger doses of opioid pain medications so I stick with a regimen that provides enough relief to take the edge off my pain and I resist the temptation to increase my dose in an effort to get additional pain relief.  It just doesn't work and that's the bad news.  The good news is there are other strategies that give me relief throughout the day and using these strategies have become second nature so it doesn't feel as though I'm spending my whole day managing pain.  There are some days that are so bad -- I feel so sick, am plagued with exhaustion, and have so much pain that functioning is difficult.  Those are the days when I lay low and do nothing more than pamper myself and rest.  It's important to listen to our bodies, because they give us clues (some clues are louder than others!) about what they need, and to ignore that gets us into trouble.  I save Vicodin for bedtime, because it's critical to get enough sleep.  Depending on my activity during the day, Vicodin may not be effective, but I have other "tools" in my pain management toolbox.  I have found that distraction is the very best medicine and is far more effective than any pain medication I have used for my chronic and unpredictable pain.  Not moving is the kiss of death.  The hazards of immobility is something nurses learn in their very first class in nursing school, because to keep people moving is critical to everything that ails them.  When people cease to move, their body starts to deteriorate immediately on many levels.  It seems so opposite that we must get up and move when we feel sick, exhausted and in pain, but that's exactly what we must do.  I tend to reject the workout program thing.  Instead I incorporate exercise throughout my day.  The key is to do what you enjoy and brings you joy.  I enjoy going for short walks with my two cats and my dog.  They are all getting older and my dog has two congenital heart defects and taking Enalapril so they all move at my speed!  I also enjoy gardening so I have trimmed down the amount I have to do so it isn't overwhelming, but keeps me moving.  Caring for my cats and dog, and feeding the wild birds also keeps me moving and I have my daily routine to provide them with what they all need to thrive and that brings me joy.  When I stop moving I have a tendency to have more pain and I have to be careful not to overdo.  While I was checking out the bird feeder the other day I was surprised to find a 40 pound javelina grazing on bird seed.  Now that was a distractor from pain!  Ha!  Listening to music while I cook or during other activity distracts me from my pain.  I spend time with my kitties and dog . . . I'm sure that rubbing my hands in a fur ball lowers my blood pressure, diminishes my pain and is very therapeutic in a meditative sort of way!  And they love it too.  I socialize as much as I am able and I love to read; both great pain distractors.  It's all about focusing my senses on environmental stimuli that are able to override the pain I feel.  Night time is the biggest challenge and that's why I save Vicodin for bedtime.  At night everything is dark and when the lights go out there is very little sensory stimulation to override pain, so my complete attention is on painful stimuli.  When I am having difficulty sleeping I go out to the living room and turn on the TV.  I may also do some reading while I'm watching TV, which engages a number of my senses and helps to override the pain.  When I feel sleepy I lay down on the sofa and watch TV and then I am able to fall asleep.  So for those nights I need additional environmental stimuli to override my pain and other discomfort.  Sound machines in the bedroom serve the same type of distraction.

A javelina mug shot . . . Harvey the Javelina!

Another important piece of the pain relief puzzle for me is to maintain my sense of humor and not to give in to this monster that threatens to rob me of my life.  One element in my life that helps me to keep going is trying to keep up with Sid.  When I can't keep up with him I make concessions and alter my level of participation in an activity.  I maintain a mental attitude of wellness rather than sickness.  There's that old saying that when you pick an attitude make sure you pick a good one.  And your attitude determines your altitude. I make a point of getting out of the house every day and interact with the people around me.  I also joined the local garden club to give me some activity that gives some of my time structure.  I may not be able to do the heavier work, but I have skills that will benefit the club in a number of ways.

A javelina mug shot from the other side . . . bristled up and ready for a fight!

All of these strategies may seem so simple, but they do work to provide relief for at least a little while.  Pain relief efforts are just that:  effort.  It requires planning, work and lots of determination.  But that's a small task for a warrior!  All of us would love to be completely pain free, but that just isn't realistic.  The most important component of my pain relief program is being connected to all of you.  Being connected with others that are struggling every day to manage pain gives me a feeling of comraderie and I know I'm not alone.  It also gives me hope too.  Never, never give up hope.

Current research is working on a variety of ways to manage pain.  One approach is to block the pain signals from their source.  The experience of pain is a very personal experience and finding pain relief strategies is personal too.  We can give each other ideas with the strategies that we use, but each of us must define what works for us.  Some people have found pain relief from accupuncture, accupressure, tai chi, meditation and massage.  Whatever works for you, do it.  I'm sure there are some very creative ideas on how to manage pain!  Please share your thoughts with all of us . . .

Meanwhile, I think of you all every day and hope you are finding pain relief for even the briefest of moments and that you have hope and peace and joy in your life.  Blessings to you on this difficult journey!

Advocating for yourself with complex, chronic illness PART 2 - Establishing a foundation for your healthcare

The first step in advocating for yourself is to establish a solid relationship with a primary care physician.  Internal Medicine physicians are specialists in adult healthcare so it is more beneficial to build your healthcare team with an Internal Medicine doctor as your co-pilot.  It is the responsibility of your primary care physician to coordinate your care with the input from doctors that specialize in other areas such as rheumatology, ophthalmology, gastroenterology, neurology, etc.  Doctors that specialize in body parts see patients as body parts and that isn't beneficial when trying to diagnose a complex illness that includes all your body parts.  Your primary care doctor should treat you with respect, listen to your concerns uninterrupted, and develop a plan of care that is focused on making an accurate diagnosis, providing you with treatment options, and working with you to find solutions to ongoing and new problems.  Your primary care doctor should be vigilant in monitoring you for a possible missed diagnosis.  There are many connective tissue diseases, autoimmune disorders, and neurological diseases that are very difficult to diagnose.  It can take years to make a definitive diagnosis.  These illnesses have similar symptoms to CFS and fibromyalgia.

Another critical component of developing a solid foundation for your care is an office staff that works well together, is responsive to what you need, such as a prescription refill, and doesn't serve as a barrier between you and your doctor.  I had a wonderful rheumatologist that was a partner in my care and we worked so well together.  But I always had great difficulty getting my prescriptions renewed due to the office staff not following through.  I attempted to work with this and I even talked with the doctor about the difficulty I was having.  One day I realized that I was running low on Ropinirol for RLS so my pharmacy faxed the office to get the refill okayed.  Two days later I attempted to pick up the prescription, but there had been no reply from the doctor's office.  So the pharmacy sent another request by fax, but when I returned to the pharmacy there was still no reply.  The pharmacy gave me extra Ropinirol to hold me over until they heard back from the doctor's office.  I called the doctor's office and the staff member told me I needed to be seen by the doctor before the medication could be refilled.  I attempted to explain why I needed the medication, but the staff member refused to give the doctor the message.  I made an appointment for the following week, which was the earliest appointment I could get.  I considered driving the 30 miles to the office to talk with the doctor since the staff were acting as a barrier, but the doctor wasn't in on Friday.  The pharmacy refused to give me any more medication until I saw the doctor.  I had to go without taking Ropinirol for 4 days.  By the fourth day I was unable to remain still for longer than 1 minute at a time and therefore I was up and moving for 27 hours straight before I could get to the doctor's office just to get a prescription filled.  The doctor was dismayed to find out that her staff had been a barrier in my care.  I made a decision to change doctors even though this doctor was a wonderful co-pilot.  If the office staff are a barrier it doesn't matter how good the doctor is.

An important concept for all of us to embrace is that we are healthcare consumers.  We hire doctors to give us an opinion -- essentially, they are our employees.  If the doctor's performance is poor we can fire them just as quickly as we hired them.  The doctor we choose to see is accountable to us and our expectations.  Take the time to sit down and write a list of expectations that you have for the doctor you hire to participate in your care.  When you see your doctor, present that list of expectations so that your doctor knows exactly what you want from him/her.  If your doctor doesn't meet those expectations, communicate that immediately to your doctor.  When you are disappointed in your doctor's performance let him or her know that.  Our power as healthcare consumers is the feedback we give our doctors and we share with one another.  I make sure I take the time to write a review of my doctor's performance on the various Web sites that provide customer feedback tools, such as Health Grades.  I check these Web sites out before I go to a new doctor.  For example, the reviews that were posted about the neurologist I have been referred to were not favorable so I discussed this with my primary doctor.  I told my primary doctor that I was not interested in seeing a doctor that has a bad attitude and I asked my primary doctor what his experience had been with other patients that he had referred to this neurologist.  It is important to have these conversations with doctors so they are reminded of our expectations.  Some people only write feedback when they are angry or when they are very happy, so take that into account when reading these reviews.  It is important for us to communicate a doctor's performance whether it is good, bad or indifferent.  Our ability to share our opinions with each other about the doctors we see ultimately improves the care that we receive.  I always inform the doctors I see that I read reviews about their performance on the Internet.

In preparation for an appointment with your doctor, make a list of concerns you want to discuss.  Doctors are busy and can only address 2 or 3 issues per visit.  Before your appointment review your list and select the most important issues you need to discuss.  You can always make your doctor aware of additional issues you have and then decide how to get those issue addressed, which may mean making another appointment.  If you go to your appointment prepared and organized you can accomplish a lot in a 15 minute appointment.  When the doctor walks into the exam room I communicate the number of concerns I have to the doctor and then I start with the most important concern.  I am aware of how much time I have and work through all my concerns within the time that is available.  It is difficult to address the many issues that patients have when a complex illness is involved.  If time runs out and there is another concern that you have, this can always be discussed with the doctor's nurse or nursing assistant and then they can get back to you with an answer.

When a doctor makes a rude statement to you, becomes annoyed when you want to talk about a new symptom or a persistent symptom, or oversimplifies your diagnosis, it is a sign that you have reached the end of that doctor's knowledge and it can be an exceedingly short trip!  A competent doctor that cares about patients has the ability to admit when he/she isn't sure about the diagnosis and avoids labeling or stereotyping a patient.  I have had a number of physicians write bogus comments in my medical record.  That's a lot of power!  Most recently I saw a neurologist for my peripheral neuropathy and he documented in my medical record that I'm "just depressed" and I have "skin sensations".  I am now in the process of challenging that doctor and having my medical record amended.  Remember that you own your medical record and you may request to review your medical record at any time.  If you do not agree with what is documented in your medical record you can challenge that documentation and request that the documentation be changed.  The content of your medical record has many implications for you both legally and medically.  This documentation is critical if you need to apply for disability and may have implications for a health or life insurance policy that you wish to purchase.  Your medical record is a legal document that follows you throughout your life and the tendency of anyone reading your medical record is to believe whatever a doctor writes.  Doctors have a great deal of power and that power is recklessly abused at times by doctors.  We must exercise the power we have as healthcare consumers and advocate for ourselves to ensure that our healthcare outcomes are favorable for us.

The next topic in this series that I will be discussing is how to speak the same language as your doctor and healthcare team.  Meanwhile, take good care and be well!  Many Easter blessings to you . . .

Advocating for yourself with complex, chronic illness PART 1

My 30-year career as an RN included a passion for patient advocacy.  People that are acutely or chronically ill are vulnerable and deserve to be treated with dignity and respect.  Vulnerable people need supportive and trustworthy people on their healthcare team, and the patient serves as the captain of that team.  My personal experience as a patient suffering from a complex and poorly understood illness hasn't always been a pleasant one with regards to my healthcare team.  I know that others have had similar experiences.

Any illness is a very personal experience that is unique to that person.  As a healthcare professional it is a privilege to be a part of that experience and to be a member of that person's healthcare team.  Unfortunately patients don't always feel as though they are the captain of their team.  In fact, many times patients feel more like outsiders and as though they are an annoyance when interacting with health professionals.  It is those times when we feel most isolated and alone, especially if we have been discounted and prescribed treatments that provide little symptomatic relief, but lots of side effects.  Feeling alone and unsupported emotionally at a time when we are so vulnerable is a difficult place to be.  That leads to a myriad of emotions including anger, depression, anxiety, fear, frustration and more.  We desperately need an advocate to help us navigate a complex and sometimes seemingly hostile healthcare system that will only continue to become more and more complex.  The complexity increases even more when the patient has a poorly understood illness that presents with a long list of confusing symptoms and reliable diagnostic tests don't exist.  On top of all that our family members and friends have difficulty understanding how desperately ill we are because "we don't look sick".  That only adds to our feelings of isolation.

There are advocacy groups in the Fibromyalgia and chronic illness communities, but those groups work in the background on our behalf and cannot be there for us when we need them most.  What we need is our own personal advocate to stand by our side when the going gets tough and to direct a healthcare team that may be apathetic at best.  So where is that advocate?  That advocate lies within each of us.  We must arm ourselves with knowledge of how the healthcare system works and how to find a medical provider that will serve as a co-captain in our diagnosis, treatment and care.  That's a tough charge when we feel so sick and are in so much pain, but as healthcare consumers we have a lot of power -- knowledge and camaraderie are power.