The Sparkled Life

let me paint you my thursday evening picture.

its 10:30pm.  I’ve been lounging in my bed, in my little pink with zebra accent room, with sputnik curled at my feet.

In my hands is a cup of tea: acai berry and lemon ginger.  To help with sleep and detox.  A great mix.

The only light is coming from a candle that I “borrowed” from my mom.  Its providing a great, candle-like glow.

For the past 20 minutes I’ve been staring at my computer screen.  At a specific picture actually.

Not many thoughts are crossing through my head.  I spend 20 minutes reading and re-reading those words.  Trying to find hope in them.  Trying to find the sparkle in them.

But, as you can see, it’s pretty black and white.  The hope and the sparkle, after 20 minutes of “searching”, I realize has to come from me.  And I’m not quite sure how.

Today was suppose to be an easy visit to the Neurologist office.  And I’m sure compared to the many others that attended that office today, my experience was minimal.

I went with a list (I have a list for everything) of the 4 top items/questions that I had.

3 of the 4 were pretty straight forward.  “Dont hold me to this number but this is the norm”, “Maybe” “Hopefully”, the usual answers.  Nothing too shocking.

The 4th however was a little heart-breaking. 

The symptom that led me to attend the ER March 21 2012, receive my first MRI and cause me to be diagnosed with MS, was numbness/tingling in my feet and legs.  Its as if your foot fell asleep but never wakes up.  You go to stand and you cant feel your feet.  Walking becomes extremely difficult.

Over the course of the past few weeks, these symptoms had come back after an 8 month hiatus.  I wake up in the morning and hop (ok slug) out of bed and it’s like “wooh, feet, time to wake up loves!!”

I had gone a few weeks just figuring it was the weather (I mean, it is freezing outside!!).  But today decided to mention it, figuring it would be confirmed as “just a short come back, no need for worry”.

Instead, it is believe it might actually be another (ANOTHER) active lesion, a flare up.  Which means another ride in the “white donut” aka MRI.  If it comes back active then steps will be made to help bring the activity down.  I made it very clear that steroids and I are not friends so we will go a different route.  

Yet again, another visit that all answers lead to the all over-bearing MRI results.  

Yet again, another possibility of an active lesion.  

Yet again, another possibility of nothing being able to help provide any relief.

Yet again, me trying to find that hope and sparkle to get me through.

I have to remind myself of how far I’ve come.  My stubbornness pays off so well. 

Hear my speech compared to 6 months ago and you’ll be amazed.  I’m down to one crutch for short distances (though I still fall once in a while. I find it funny).  My fine motor skills are continuing to grow; 7 months ago I couldnt raise a fork to my mouth.  Tonight I waxed my own eyebrows.  A risk perhaps but I am glad to report that I still have two (nicely shaped) eyebrows.

But today’s adventure shows the true course of Multiple Sclerosis.  You dont know.  Your body is like a ticking clock and you are just not sure what might go next.  And there’s no stopping that clock.

I want to yell FUDGE you MS.  I am so frustrated.  I can do all that I can but really, my life and this disease are not in my control.

So I stare at a black and white picture with words that I hold on to as my hope, as my sparkle.  I have to trust that there will be a cure or some new research with answers.  I have to trust that God wouldnt bring me to a mountain I couldnt climb.  I have to trust that I am surrounded by people that love me, no matter what.  I have to trust in myself, that I am strong enough to make the black and white sparkle.

I have to remember that while MS might have control over my nervous system, I have control over how I react to the situations.  And though I may have a bad day or seem lost, I must keep my head up.

After all, my princess crown will fall. (:

Love and sweet dreams, Eliz