Wednesday, July 31, 2013


Today the MS world is tagging all items with #cureMS in order to create more MS awareness.  

Obviously it is known that MS awareness is something that I'm 100% for; I feel my entire life has become so MS focused and a storybook of MS awareness.  I even have these tad bits of fear that those around me are getting extremely tired of the "Eliz has MS" party.  

It goes without saying that I would much rather be having sparkle parties celebrating job promotions and the such.  That is not the case though.  
That fear gets pushed aside when I hear of other MS stories of suffering and pain.  It gets pushed aside when I think back on my own journey.  For each story is only encouragement that this truly is a fight for a better life.  And I'm not one to turn down a fight.

Today I was reminded of a humorous event during my early days of being diagnosed.  As I have shared before, my MS diagnosis was overnight.  One day I couldnt feel my legs; went to the hospital; had a MRI; received a phone call at 10:30pm stating I had 6-8 lesions and had MS.  Crazy.

The next day I was sent for a lumbar puncture (my first of three in 1 year) to confirm the diagnosis.  I was pushed in the hospital bed to an operating type room with a huge fancy machine.  The doctor came in and explained to me the risks and what was going to happen.  

Though lumbar punctures in the past were done manually, this hospital had a machine they used to be more precise and accurate.  The machine was a fail.

It hurt.  The doctor said there would be a little bit of pressure but there was an intense level of pressure and pain on top of the awkward numbness.   Having a needle go into your spine is no small deal.  It took quite a while to actually get a flow for him to extract some spinal fluid and the pressure remained.  I was advised to lay flat on my back for 24 hours to refrain from getting a leakage in my spine.

Fast forward 5 days.  Im home in Pittsburgh, lying on the couch in pain from my back and experiencing a spinal headache.  This is caused from the hole in your spinal chord not closing up and your spinal fluid leaking out.  Its described as one of the worst pains a person can experience. 

On the way to my first out of the hospital Neurologist appointment, we hit a detour.  For those that dont know Pittsburgh, detours mean "good luck finding your way out of this crazy maze!".  There's no direct routes and no direct lines and its usually the safest to just go home.  

As mom patiently drove around in circles (this one of the most thankful time I was for my mom; she does not handle navigating well yet she rose to the occasion like a rock-star), I sat in the passenger side wishing I had gone to confession recently for I was surely going to die.  

The Neurologist took one look at me and knew I was in no shape to be doing anything in life and scheduled a blood patch.  A blood patch is a procedure where they take some blood and use it to patch the hole in your spine.  Outpatient, quick and easy with a 95% success rate.  Sign me up.

The nurses gave me something for the pain and to sedate me some prior to the procedure.  Mom went to the waiting room where there was a tv showing when a patient went into the operating room and when they came out.  15 minutes top I believe was the time they gave her.

45 later and my name was still on the operating room list.  

There I was, lying on my side with my arms stretched out in front of me.  I was very out of it but knew what was happening around me.  They walked me through each step: there would be a doctor with a needle on my spine and another getting the blood.  They would work together throughout the procedure.  

Needle goes in spine...blood line doesnt produce blood.  No blood to be seen anywhere.  I had warned them my veins were shot and now they believed.  A few moments of panicking as the doctors are conversing what to do; they cant leave a needle in my spine for long, it will only increase the hole.  

Before I knew it, the whole room rotated and the doctor with the spine needle was now in front of me.  He popped open an artery in my wrist; blood starting to spurt everywhere as I laid there thinking "huh, this is interesting".  

They got the blood, they put it in my spine and tada, the spinal pain was gone!  

All this happening while my poor mom was having a panic melt-down in the waiting room.

I remember thinking on the way home how crazy of an adventure that was and how I'd probably not have many more experiences like it.  Or rather, I was hopeful that I wouldnt.  

If anything, this situation is more humorous due to the fact that I've had many more extreme cases than this.  This seems minor now considering.  

And this is why a cure for MS needs to be found.  So that people do not have to "just get use" to terrible procedures and happenings.  Yes, the MS movement has come so far; there are new drugs being researched and more answers being sought.  And this work is due the many who live their lives with the hashtag of #cureMS; they are the true fighters.  But we're only partly there.

Help out the movement by creating awareness or by donating to Team Sparkle, who's proceeds go to the National MS Society and all that they do. 

Thank you to all those that have been on the journey so far.  Its been a crazy ride and its far from over.  We'll just keep sparkling on through!

Much love,

PS: If you ever find yourself in a situation where you need a lumbar puncture, find a doctor who will do it manually.  My other two LP's had extremely less amounts of pressure and pain and thankfully, no spinal fluid leakage.  And if you do find yourself with a spinal headache, get the blood patch.  Its instant relief!