Monday, March 26, 2012

That which has been Diagnosed... and Dismissed

Diagnosed...  
After ten months of searching, I find myself grateful for healing and reflective about the journey.  I find myself contemplating my condition... a condition which I have given the term:

Pegerdesibssalobues

This is most definitely not an official diagnosis... rather it's my own personalized noun for all the acronyms of the (known and probable) factors of my health.  To be sure, I've taken the liberty of adding a few of my own letters to the mix.  I admit that unpacking all of the acronyms I've added together would necessitate a lengthy one-on-one conversation.

If we're considering the purely medically relevant factors, the three most essential components of it are:
  • PE (pulmonary emboli), 
  • GERD (Gastroesophageal Reflux Disease) and 
  • ES (Esophageal Spasms).  
Although the most recent results are not definitive, it is relieving to be able to proactively treat the pain and pressure.  [Insert happy dance here].

I have had a bit of time following this new development which has led me to a new step.  This step involves me coming to a point in recognizing the strengths and weaknesses of the things that have been dismissed in the process of coming to (and following) this diagnosis.  Talking about the dismissed aspects is hard for me as, in most ways, they represent loss, frustration and regret; however, I hope that sharing my experience may help others in their own journeys.

***

Dismissing the significance of a condition...
One of the most important things I have learned from the pulmonary emboli is this: if you think that there is something wrong, seek medical attention.  Don't dismiss it: pursue solutions, self-advocate and, above all, never give up.    


Dismissing a condition as insignificant...
It happens more often than we think.  I found the following quote from an author who suffers from Chronic Fatigue Syndrome interesting.    

Most people, when they hear the disease name, it's all they know about it. It sounds so mild. When I first was sick, for the first 10 years or so, I was dismissed. 
~ Laura Hillenbrand

When I was first told about the GERD, I have to admit that I dismissed it pretty much altogether.  In comparison to the rest of the journey with the PE condition and in relation to symptoms that I felt were likely connected to my heart, acid reflux seemed benign.  

However learning about GERD and about Esophageal Spasms from a new perspective changed my understanding of the conditions.  I have thought a lot about the last consult which led me to the discernment about taking what seemed to be an insignificant factor (esophagus inflammation and spasms) into a much more serious consideration.  

About GERD:
... about this painful and uncomfortable health condition.  Some people will mistake GERD with heart burn.  This is because GERD symptoms can be very similar.  In a way, GERD is just an extreme and severe version of heartburn.  First, we need to talk about the causes of this illness.  There are many causes, such as obesity, that can cause the problem.  Generally this will lead to the sphincter that connects the esophagus to the stomach becoming faulty.  In a healthy body, this opening will only open when food needs to pass into the stomach.  It will then close for the remainder of the time.  This helps prevent the stomach acids from reaching the esophagus.  While the stomach can handle these acids, the esophagus can’t, which will cause damage.  GERD patients will have stomach acid going into their esophagus on a regular basis, causing discomfort, pain and damage.  GERD symptoms can be quite severe.  Think of how it feels to have heartburn.  This is uncomfortable and painful.  Well, GERD is similar but feels much worse.











Esophageal spasms are painful muscle contractions that affect your esophagus. Your esophagus is a long hollow tube that runs from your throat to your stomach.  Esophageal spasms can feel like sudden, severe chest pain that lets up after a few minutes. Esophageal spasms usually occur infrequently.
But for some people, esophageal spasms are frequent and severe. The muscle contractions may prevent food and liquids from traveling properly through your esophagus. Esophageal spasms can lead to chronic swallowing problems and pain.
I am beyond thankful for the improvement since the treatments have started. The pain is being progressively reduced in both intensity and frequency; the nausea and exhaustion no longer eclipses all activity; and small increments in increased energy have led me to a new kind of hope that healing is a reality.  

Learning first hand about the benefits of not being dismissed:
When a specialist admitted that he did not understand why completely unrelated and significant conditions manifested in my otherwise healthy body, I finally found myself in a place of acceptance.  

It seemed so counter intuitive to me that a medical professional's acknowledgement of not knowing the source (and not having answers for symptomatic concerns) was incredibly helpful.  However, after being dismissed numerous times along the way, receiving the response "I don't know" combined with the fact that the concerns were legitimate changed everything.  

Dismissing other factors of health...
In the last few weeks I have taken a new inventory on the impact of stress in my life.  I have recognized that dismissing stress and other emotional aspects impacting my life means dismissing important components of health.  I will be contemplating this stress inventory in the days to come as it is an important part of my journey.   In the meantime, the definition by the World Health Organization of health reminds me that health is not merely not being sick:

"Health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity."

Choosing to dismiss other factors of health...
These are the things that I choose to dismiss.  I choose to dismiss the other peripheral concerns which have come to light through this process about my physical condition... this includes even the source of the pulmonary emboli.  The term 'unprovoked' with relation to the clots is limited at best as the clots were provoked by some factor; I have concluded that, at least this time, the source will remain unknown to me.  Choosing to dismiss this question - primarily the question "why?" - is a conscious decision.  In it's stead, I choose health and gratefulness for the days that I have.

All the same, the hematology specialist emphasized the importance of recognizing the fact that the unprovoked nature of the clots requires diligence on my part.  Lifelong preventative measures - in the straightforward method of anticoagulants - are his recommendation.  Undeniably my life has changed and this is one area that I cannot dismiss though I choose to no longer search for an answer.

Not dismissing the other definitions of healing... 
I am currently parked on one facet of the definition of healing - that of healing in the sense of 'to be made whole'.

The following is from a definition about healing which I have reframed to fit my own faith-based perspective though the foundational objectives are extremely important.

What Is Healing?

“Healing is a spontaneous event that comes about through a kind of grace. It can happen anytime, and in any place. It may or may not happen in the context of a healing session. It may come about simply with a smile from a stranger, the breeze blowing through the trees, the song of a bird — some reminder of our connectedness and wholeness — the beauty of Life just as it is at this moment for us.  Healing can happen on many different levels. Sometimes our healing is not what we expect. We need to be open to the gifts which life is always ready to give us. It may be that a physical problem heals, but it may also stay awhile to teach us something. Sometimes a health challenge is a doorway to a deeper healing, a cry from deep within for attention to some part of us that has been unloved and feels separated from the Whole.  Regardless of whether our focus in healing is on the physical, mental, emotional or spiritual level, all levels are invariably touched by the process, and none can be separated out from the rest.” — Mary Maddux
The Merriam-Webster dictionary gives the following definitions of healing:
1. to make sound or whole
2. to restore to health
3. to cause (an undesirable condition) to be overcome
4. to restore to original purity or integrity
5. to return to a sound state
“to make sound or whole”…
Although it is clear from these definitions that the word “healing” can be used in very broad ways, it most often refers to healing of the physical body, as in the healing of a disease of injury. It is also frequently used to indicate healing of mental, psychological, and emotional conditions. For those who are spiritually inclined, “to make sound or whole” would have to include the spiritual dimension of life, as well.

Immeasurably More than diagnosed and dismissed... 
Taking account of the 'Pegerdesibsalobues' is a reflection of the fact that this journey has been immeasurably more than I could've imagined at this stage of my life.

I will not deny that this has been intensely hard... and I find myself using the expression "on so many levels" to describe it.  There have been a handful of times that I've taken account of what this 30-something body has gone through in the last two years.  From being in awe of the experience of a twin pregnancy to the frustration felt in the depths of intense pain, I often can't believe that this has been my journey.

Contrasting the overwhelming number of physical elements to the blessings (and now to the healing) I have experienced has been the kind of perspective that changes everything.  It has led to hope, peace, and joy: three elements that cannot be overlooked in complete healing.

Ultimately, well beyond that which has been diagnosed and that which has been dismissed, I am thankful.  

***
19The LORD's people may suffer a lot,
   but he will always
   bring them safely through.

Psalm 34:19 (CEV)

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