Saturday, February 2, 2013

Road Block

It has been five months since my last post. As far as writing is concerned, I want so much for my writing to be perfect...don't be too whiny - self pity is not attractive, ease off on the emotion, show your faith, make people proud, be a strong example, ect...
So I would write on this blog, but then question my words. And that questioning held me back from communicating honestly.  As a result, I have five "drafts" ready to publish.
This is one of those drafts written on November 8, 2012.

I was fairly surprised by my willingness and eagerness to get to my first genetic counseling appointment.  Out of character, I arrived about 45 minutes early, ready for whatever the day was going to offer.  CADASIL is such a rare disease, very little information is published on the internet or in medical journals.  The counselor (a PhD) and the geneticist (a MD) were both very informative.  They began by explaining that there was an "approval" process to determine if I am "fit" to be tested.  They explained that not all patients are advised to get testing for a condition like mine, since there are no treatments or interventions that could prevent anything.  It was their job to ensure that patients wouldn't become suicidal or debilitated upon discovering their results were positive.  I had to answer many questions about how I would live my life if I were to be positive. 

After the meeting, both doctors believed strongly that I was prepared to begin the process for testing. The next step was to set up ongoing counseling, to be used before and after the results came back.  I was ready and eager to begin the process.  But then, it seems, that life just got in the way.  It has been three months since my genetic appointment, and I have yet to go to counseling.  What is holding me back?


1 comment:

  1. Jo--I wish I had some great advice to give, but all I have is a listening ear and you know you can call when ever you need. This is YOUR blog--what what you want/need to write!
    Praying for you and support you no matter what you decide!
    Love
    Amy

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