The anatomy of hope . . .

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

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

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

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

Coping with a chronic, invisible illness

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

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

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

Fibromyalgia mystery may finally be solved

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

http://guardianlv.com/2013/06/fibromyalgia-mystery-finally-solved/

Conquering the Pain

A zuni bear bracelet and matching earrings

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

Bead embroidery: a work in progress

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

My friend, Lori's, bead embroidery

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

A set that I just finished this morning

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

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!