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.

Symbols of who we once were

Over the years I have sorted through my belongings and made decisions about what I should keep and what I should move along.  I have always believed that if I no longer needed something that it's a good thing to let go of it and allow it to go to a new home.  There seems to be no good reason to keep something I no longer use.  But as I have gotten older and this chronic illness has taken its toll on my body it has become more and more difficult to let go of certain belongings.  This recent move to a home with less storage than my previous home has presented the dilemma of purging more belongings than I was prepared for.  I have come to realise there are things that I cling to despite the fact I haven't used them in 6 years.  Even the 5 year test seems to be a little long.  If I haven't used something in 5 years it's unlikely I will ever use it again.  So why on earth am I so reluctant to part with these things that have no obvious use?  I haven't used my cross country skis in 6 years and I'm living in a place where suitable snow is not generally available.  Due to my health status it is unlikely I will ever ski again.  That's a stark reality for me.  So do I just accept that reality, sell my skis and move on?

I have always been so rooted in reality and I learn life's lessons from my life experiences and then keep moving forward.  It just seems that spending too much time reminiscing leaves people stuck in the past, which prevents them from enjoying the present and creating new life memories.  But when the future may not hold new adventures and physical decline is the expectation, what provides that quality of life that keeps moving us forward?  If I let go of my skis is that a statement of defeat?  Those skis are symbols for me.  They symbolize a time when I was able to overcome this illness in an act of personal rebellion and rise beyond its limitations and feel normal again for at least a short time.  Of course I always paid the price for the level of activity and effort required while cross country skiing, but it kept me sane and grounded . . . and hopeful.  But this day is a new day for me and going cross country skiing is no longer an option for me.  To let go of a symbol of a more vigorous time creates a sense of grief.  But isn't that something we all experience if we are lucky enough

The changing landscape of our lives

I recently changed the landscape around me by moving from north San Diego County to a delightfully wild area of the Arizona mountains near Prescott.  I am fortunately in the valley at 5,000 feet where the weather is warmer and the snow is an infrequent, delightful and transient visitor.  Decisions to physically move is an obvious change in our life landscape, but what about those insightful, aha moments that make our life appear so different than it did only moments before?  Many of these moments are so subtle that they may escape our attention and others are like a stick of dynamite that explodes right before our eyes and demands our attention.  Just when I think my life is on a steady course, an aha moment changes that course in a new direction toward uncharted territory and an adventure in discovery.  In the middle of the chaos that characterizes packing a house and moving 350 miles I had one of those aha moments, which was generated by my continuous quest for answers.  My diagnosis of Fibromyalgia has always raised questions for me as it may have for many of you too.  That unconscious part of my brain that works in the background, nags at me when pieces of a puzzle don't quite fit, and it prods me to keep asking

Beyond the winter solstice

Now that winter has officially arrived in the northern hemisphere I'm wondering how everyone is doing.  The changing seasons and weather extremes are known to increase Fibromyalgia symptoms and pain.  Couple the colder weather with more activity than usual through the holidays and the result can spell disaster in the weeks following.  Even if you paced yourself the disruption of your usual daily schedule may lead to increased pain and fatigue.  I'm thinking that most of you are probably wiped out.  In addition, the shorter days have an effect on our bodies as our brain receives less daylight, which triggers a hibernation response.  When shadows grow long a sort of melancholy sets in.  The lessened daylight signals to the brain has an effect on neurotransmitters, those chemical messengers responsible for our feeling of well-being.  I am reading more and more research studies involving the neurotransmitters.  Neurotransmitters are the focus for so many chronic illnesses, which may be the critical key that will unlock the mysteries associated with chronic illnesses that currently have no cure.  Meanwhile, we must manage our daily symptoms during these bleak winter months that follow the winter solstice.

Male Northern Cardinal

I have always celebrated the winter solstice with great enthusiasm.  Despite the fact that winter is in its full glory there will soon be signs that spring is emerging, promising new life.  In the northland where winter is long it is especially important to watch for those subtle signs of spring.  In late January the male cardinal begins to sing his song in the tallest treetop perch, already staking out his territory.  He is easy to spot in his lofty perch since all the trees remain dormant and are leafless . . . and after all he is a brilliant scarlet bird that dares to taunt the predator hawks and kestrels while in such a vulnerable position.  He sings urgently

The New Year 2013 begins with cars flexing their motor muscles!

Mike Hayden

Mike and his Pit Crew

A New Year's Day tradition that started as a small event hosted by Mike Hayden and The Shafters Car Club kicked off today at 10:00 am.  Over the past several years this event has quadrupled in attendance and the enthusiasm just keeps growing.  Mike builds race motors and he just happens to have a 600 ft drag strip at his house.  This is what you call a hard core car guy!  This event has grown to include a pit crew, an announcer and DJ, and lots of great food cooked outdoors on site.  In addition, the passion that many in the community have for our military men and women has been included in this event as a fund raiser for the Wounded Warriors.  Today $1,700+ was raised to support these courageous men and women.  Last but not least, people bring their cars to flex motor muscles on the drag strip.  This results in lots of smoke, lots of noise and lots of cheers too.  Several guys brought their drag cars, but no nitrous was used this year so we didn't have any wheels coming up off the strip.  A number of people smoked the tires of their family car and that always results in a good laugh too.

MOPAR Danny

There is nothing as rejuvenating as pretending that you're a kid again.  Many of the drag car drivers today are in their 60's, but they have no intention of slowing down yet.  That spark and spirit is what truly keeps people feeling and acting younger than their biological years.  And acting like a kid again helps to ease chronic pain and boost the spirits of those people with chronic illness.  The looming fiscal cliff and all the past year's worries and concerns of a sluggish economy have taken it's toll on people.  People all over the world are feeling a financial crunch, because we are globally connected to one another.  There is only one

Your spirit, essence and intention lingers in all those things you touch

This Christmas is so different from my Christmas in 2011.  Last year the house was decorated and the atmosphere was festive.  Multicolored lights twinkled on the tree and greenery boughs gracefully drooped around each side of the overhead kitchen cabinet.  The table was set with red Dansk Nordic Knits dishes and minature lanterns lit each place setting.  It took me several weeks to complete the decorating, but I was relaxed and enjoyed every moment of the holiday season.  This year is different, because there are no decorations and in their stead are stacked boxes of the belongings that will be moved to Arizona.  The excitement of the move has been replaced with the arduous task of packing dishes, glassware and other breakables with extra care that a long distance move requires.  As I pack each piece I think about the journey and wonder if I have packed it with enough care to ensure its survival.  I had special concerns with Sid's mother's antique ink well collection.  A good friend of ours, Bob, has his own moving company -- Bald Eagle Movers.  Bob will be moving us into our new home and will be the first of our friends to be stepping across the threshold of our front door.



The gift of carefully folded paper

A couple of days ago Bob dropped by with previously used empty boxes and a large box of neatly folded packing paper.  Bob had obtained the packing paper and some used boxes from someone that he had just moved.  It was so remarkable that each sheet of packing paper had been folded with great care -- all the edges were lined up and the crinkles in the paper had been smoothed out as if each sheet was an expensive linen being prepared for placement in a linen closet.   The tall stack of folded paper fit neatly inside a large box as if this box had been specially selected for a custom fit.  The packing paper I had purchased and had been using for packing was a rather monotonous task.  Today I

Willis-Ekbom Disease (restless legs syndrome) research may lead to better zzzzzzz's

Willis-Ekbom Disease (restless legs syndrome) is a serious movement disorder related to Parkinson's Disease.  This disease causes significant impairment in many people's lives and affects children and adults.  It is well-known that WED/RLS has a major effect on the ability to get a restful night's sleep, which is the most prominently identified WED/RLS symptom.  The Willis-Ekbom Disease Foundation (formerly known as Restless Legs Syndrome Foundation) is an excellent information resource for people suffering with this disease, and for medical professionals too.  The Web site may be located at www.rls.org; I encourage you to check out the Web site and consider joining this organization to give WED/RLS a strong voice.  Their publication, Nightwalkers, is always a resource of helpful, up-to-date information that includes some of the latest research.  Nightwalkers is published quarterly and I recently received a hard copy of the Fall 2012 publication.  There is an article, Exploring the Role of Glutamate in WED/RLS, in the Fall 2012 publication on page 13 that discusses recent research containing valuable information for people with WED/RLS . . . and possibly fibromyalgia.  Many people with fibromyalgia have WED/RLS.  This research may provide clues that connect these two illnesses and explain the sleep disorder that is prevalent in both.

The new research featured in the WED Foundation 2012 Fall publication is a study conducted by a Johns Hopkins team of scientists.  Dr. Richard P. Allen, the principle investigator, stated that glutamate-hyperarousal (glutamate is an excitatory neurotransmitter) would be a third major area of documented brain abnormalities in WED/RLS.  The three brain abnormalities are dopamine, iron, and now glutamate, if this research confirms the glutamate connection.  The most commonly used

Life is so fragile and each day is a gift

So many things in this world are difficult to understand, but none is more uncomprehensible than the senseless taking of a human life.  We all struggle to make sense of the seemingly random acts of violence that have occurred in our schools, shopping centers, restaurants, theaters and other public places and in our homes too.  We experience an array of emotions in response to these acts, including anger, sadness, grief and loss, and frustration.  We feel the tremendous grief and pain these families are in and wish there was a way to ease their pain.  In response to these emotions we search for remedies so this never happens again.  Psychologists attempt to identify the "warning signs" that indicate the breaking point of a human mind, but there are no easy identifiable signs.  The isolation and powerlessness that people may feel can push the limits of the mind, but each person deals with life's challenges differently.  When attempting to identify the cause of such violent acts, people tend to focus on the obvious "problem":  availability of firearms or possibly the prevalence of violent movies and video games in the U.S..  Conneticut has one of the stricktest gun laws of all the 50 states and it happened there today.  Twenty-seven precious lives were lost.  So what is the real problem that results in so much tragedy?  To identify the real

When "stuff" invades your space

Arizona mountain sunset

Most of us in the U.S. have way too much stuff.  I was thinking about that and it is such a curious thing to me that we hoard stuff that is actually quite insignificant in the whole scheme of our lives.  Some people get tired of their stuff and change it out for all new stuff.  I'm wondering why all that stuff plays such an important part in our lives.  Are we so weary of our lives, ourselves and our environment that we encumber our lives and waste our money on things we don't really need?  When I see a homeless soul walking on the side of the road I am in awe of their small pack that holds all their earthly possessions.  These resourceful people have perfected the art of limiting their stuff to a few priorities.  I have a good girlfriend that packed up her Ford Pinto with her stuff and drove across the country in the 1970's to live in another state.  That really impressed me.  She was able to put everything important