Sunday, May 19, 2013

Here I am

What is common with multiple sclerosis is that a person will experience a relapse due to a lesion on their nervous system.  

In the young ages of MS, these relapses usually heal up.  There are various ways of helping to recover from a relapse (steroids the usual, plasma for extreme/back-up).  

A MS sparkler then heals and goes into remission.  And though that is good progress, it can also be challenging, not knowing when the next relapse will strike.

Today I only did two things: attend church (in my wheelie...didnt even have to walk) and go to Starbucks to catch up with my lovely friend Natalie.  

 Such a good friend this girl is.

Two non-stressful, relaxing things.  

Yet I found myself at 5pm as if I hit a brick wall. And am still recovering.

MS can mess with you cognitively and emotionally, especially when you have brain lesions as strong as mine.  I must remember that.  It's ok to cry, even though I thought of it as a weakness before; now its more of a recognition of the life that is happening around me.  

Or so I tell myself.

I dont question why God designed for me to develop Multiple Sclerosis.  I see signs throughout my life that lead up to what is today.  And have experienced the most amazing things since being diagnosed, only confirming that I can do this.

But what I do question is why it has to be so severe.  Why is it that I'm two days short of having MS for 14 months yet have not gone into remission?  Why does my body reject everything?  Why am I "so healthy" that the drugs that can make me better make me worse?

Why cant I be a normal, boring MS sparkler?  Why cant I spend more hours promoting MS awareness instead of sitting in a chair having all my blood removed?  

Its very challenging to start this new MS life when I cant even get out of bed.  

During mass today the song "Here I am Lord" was played.  (I know I dont normally post about my faith but it is fitting as it is the rock that keeps me going despite all the let downs.  A rock I so need currently).

As I sat there, in the back of the Church, in my wheelchair, listening to the lyrics, I had to stop and hold back tears.  

Growing up, especially in my high school years, I would ask God to "lead me".  I felt it noble, encouraging.  My calling.  Yes, perhaps naive.  But apparently God still heard and answered.

Here I am....not exactly what I thought I was signing up for when I prayed those words.

But the fact that I asked God for guidance and for love gives me the hope to know that my case of Multiple Sclerosis is no accident.  I dont know why.  I may never know why.  But I trust.

I trust that my doctors will find me some relief.  I trust that I will know what steps to take next.  I trust that all the finances and bills and stress of having a chronic disease will work itself out.  I trust that life will go on and I will continue to sparkle.  I trust that Starbucks will eventually acknowledge and corporately become part of The Sparkled Life (ok...far fetch but a girl can dream). 

The Sparkled diagnosed, day released from rehab and today.  
I might have lost the tan, gained a few inches of hair, learned how to give real sarcastic faces in pictures...but I'm still me.  MS can alter my nervous system as such...but it cant take away who I am.

To MS sparklers, to MS supporters, to MS fighters...this journey is a promised one.  I have hope for you, for me, for us.

Here I am.


Here I am Lord...
I have heard You calling in the night.
I will go Lord, if You lead me.