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!