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!

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