Sunday, September 25, 2011

Here We Go

I do not advocate alcohol as a coping mechanism, but it was almost empty!
DISCLAIMER:  I am going to start by apologizing.  For many of my friends and family, this is going to be the way that you learn what I am currently going through.  It is not ideal.  Unfortunately, in the convenience of our technological age, face to face conversations can be avoided.  That being said, I appreciate now more than ever, that conversations can be exhausting and I need to exercise self preservation whenever possible.  This is my long winded way of acknowledging that for those of you who are reading this realizing that we did not have a conversation, you are not alone, this blog is the way I have chosen to relay my current situation.

It is harder than I expected to find the words to begin this blog.  I guess I should start by saying this blog is not intended to be used as a diagnostic tool but rather is my own experience, as it occurs and is my way of making sense of my situation.  Any medical concerns should always be taken up with a medical professional.   I have chosen to blog about my experience because it is a way to normalize my thoughts and feelings and possibly alleviate fears or anxiety in others.

I guess it is time to start.  It is a hard thing to say, so I will just say it.  The doctors in my family practice believe that I have Multiple Sclerosis.  I wrote just seconds ago about technology and so some of you may be thinking "don't they know?"  or "why is she writing about this before knowing for sure?"  I have good answers for both questions.
First, the doctor I saw, is fairly certain that I do have MS but because we have diagnostic tools like MRIs, he would like me to have an MS protocol done to make absolutely sure.  Second, I have decided to write about this now because the moment the doctor said that he believed that I have MS, my whole world shifted.  It may have been easier to wait until I recieved a diagnosis (which could take months) but then how could I authentically express what I was feeling right now?? Retrospective descriptions lose something in translation.  With the support of my family, I have decided to start this blog now.  I hope to describe the process and feelings that come with the diagnostic process and if the testing that follows in the next couple of months determines that I do not have MS, than this will serve as an example of a life in limbo through the medical model of tests, interventions and appointments.

It is difficult to bring everyone up to speed since MS can have a long medical history that leads a doctor to this diagnosis.  Ultimately, ten days ago I experienced eye spasms and severe vertigo which I thought was attributed to a stroke and I rushed (or at least I asked Landy to rush me slowly) to the doctor where I was assured that I was not having a stroke.  The doctor told me I was experiencing Optic Neuritis and that given my case history (I promise to get into this in more length in another post) he would diagnose me with Multiple Sclerosis.
I would like to write here that I was shocked or even surprised but for the past year the possibility of having MS has been gnawing at the back of my head (no pun intended).  When I told Landy what the doctor said he felt like it had come out of left field and he was not sure how to take my obvious relief.  I could only tell him that I had felt like I was going crazy for several months with my moments of "forgetfulness" or the tingling sensations that came and went in my hands or feet.
So now here we are.  Ten days of thinking about what a diagnosis of MS could mean.  Ten days of agonizing over whether I am feeling normal or abnormal.  We have had ten days of worrying whether I will have another bout of optic neuritis and trying to prepare for it as best we can.
Tomorrow I go back to the doctor to discuss what comes next.  We have compiled a long list of questions tonight and admittedly it has taken the time I should have used to finish my homework.  I have reluctantly done some research on the disease to help me form my questions and we are hoping tomorrow there will be more answers.
This is the beginning of my journey into an unknown future.

1 comment:

  1. I think it's incredibly brave that you're sharing your story with us. I also like that you're clearly doing this for you - whether it's an MS diagnosis or medical limbo - you'll benefit from this written therapy and that's what matters the most. :)

    Thanks for letting me be a part of your journey,
    xo

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