Sunday, July 6, 2014

A Pirate's Life (is not) For Me

So I'm sitting there at a baby shower, watching my lovely friend open her presents.  And then all of a sudden, there are two Megans. 


I got the optic neuritis.

Optic Neuritis is a (according to wikipedia) a ulti-etiological condition consiting of the inflammation of the optic nerve.  In MS terms, it means you have a lesion on the nerves that connect your eyes with your brain.

Technically I had my first touch of optic neuritis weeks ago when my vision went blurry.  It got better with time and a round of plasmapheresis.

What I am experience now is different.  It is more commonly known as Diplopia, aka double vision.  It makes life look like this:

Optic neuritis is extremely common in Multiple Sclerosis.  It is often the main leading factor in many people's diagnosis. 

For me, it was the last piece to complete the long list of all the MS symptoms (I have experienced them all now; yay!).

Every doctor, every visit, every hospital would ask "how are your eyes" and Id be thankful, no problems.  Yet.

That's why when this hit, it really wasnt a panic button situation.  Instead I just called my parents and they came and picked me up.  We knew this day would eventually come and had thus prepared for it.

What I didnt prepare for was the dressing up as a pirate part.  In order for the double vision to be limited, one wears an eye patch. 

First, the eye patch itself is super uncomfortable.  Second, it doesnt fit underneath glasses; not being a huge contact wearing person, this is extremely difficult.  

You would think it more common for someone to want to wear glasses with an eye patch and thus have an eye patch that fits underneath glasses but this is not the case.  Believe me, I have looked.

It was never a life dream of mine to be a pirate.  I never played dress up pirate.  Even with the Pirate of Carribean phase, I only enjoyed it for Orlando Bloom and that was before he became a pirate.  

The patch just isnt doing it for me. 

The hardest part is that I cant DO anything about it; or rather, anything productive that would work.  I know what it is.  I dont need a MRI to tell me.  I dont want to be admitted to a hospital to be injected with meds we already know wont work.  There is no therapy that can be done.  

I feel helpless.  I cant see and there is nothing I can do about it. 

The patch frustration doesnt help.  When I say I've looked everywhere for a patch that will work for me, I mean everywhere.  There has not been a stone unturned.  I even contacted the nursing homes (that poor woman on the phone)

And yet when I call my specialists office for help (which is their purpose right?  To help their patients when they have a flare?!), the response was "look online".  Really?  I am not here to waste anyone's time.  My past career was built around providing the most efficient procedures and answers.  You think I didnt look online prior to contacting you?  You are so kind to help me and really, your resources are top notch.  (Sorry, #dramaqueen moment).

Yes, it's just a patch.  Yes, it's just a symptom.  But just like that, everyone is looking at me again.  Everyone stares.  My doctor office is treating me like I'm some stupid silly girl who doesnt get "the program".  

Sometimes I wonder if people think that myself or others with disabilities do it for attention.  That we wear these enhancement devices for that second glance or hell, even a glance.  Do you really think that it's all in our heads?  That I'm making up this story for fun? 

Im frustrated and possibly it is because for the past three months I've had the opportunity to look normal again.  And I forgot how it felt.

And now I dont look normal.  I look like a pirate. 

A bloody pirate.

We hope that it will pass.  We hope that it will get better.  Yes, there are chances it could be permanent but we hope that it is not.  

But, as I've shared before, hope is one of the most difficult things.  Because it can disappoint.  There is no guarantee of a positive outcome if you hope.  

Yet, what other choice do I have?  I will hope till I either hear those words "You're cured!" or I take my last breath.  Life is too beautiful not to.  

Even if I now see two of everything in life.  The more the merrier.

The good news about all this is that my wonderful mom (Im assuming it was her) got another puppy for me!  It looks just like Sputnik and always stays right next to him.  They even move in unison.  It's really cute.  I've always wanted another puppy!  

Oh wait....


Love, Eliz