Celebrate the Real

I actually really dislike blogging (and instagramming and tumblring and etc).  

It's not easy for me.   I can be a very prideful person.  I like to keep the "bad things" to myself; showing my real cards makes me feel and look weak.  My worst fear is being known as "that girl with MS".  After all I have achieved in life, all the goals I still have, it's a huge shame that that's what I become summarized as.

And yet, here the hell I am. 

What gets me here is a process.  I first have to think of something to write about.  And then, while writing, I usually go over it 2 to 10 times because the first draft is just so gloomy I cant even and I'm all about positivity.  This process usually leaves me somewhere in tears and wishing I'd never even started writing in the first place. 

And then there's the step even before that that gets me started. 

It usually comes in the form of a message, whether it be a text, an email, a post on a picture.  But it can be summarized the same:

"I came across your blog and THANK YOU!  I'm newly diagnosed and your TRUTH and ability to SHARE gives me hope."

Sharing in the truth of the real of my sometimes bad but always silver lining good life gives people hope.  They thank me.  

Damn it. 

And it's not fun because I'd much rather be a fashionista blogger, or a book/tv/movie synopsis blogger, or an annoying mommy blogger (hah jk).

Yet here is the sparkled life.  Here is an incredibly unfortunate story about a girl who got MS. 

Who ended up in a wheelchair.

Who's undergoing chemotherapy treatments. 

Who sometimes become so burdened with life that sitting there and crying seems like the best option.   

But you know what's beautiful about this real story?  It's my life!  It is unfortunately beautiful in the chaos of the worst. 

I'm going to encourage you to not be afraid of your real and rather to celebrate it.  It is what makes up the chapters of your life.  And if you only celebrate the good real, and never the bad real, you're missing on an opportunity to fully and completely live.  

Recently I posted this picture of myself on facebook, making it official that I was in a wheelchair and letting all know it.  (And yes a piece of my pride died along with it).

Why?  Because it is a real piece of my life.  People posts about engagements, marriages, babies, new jobs, moving.  These are all to be celebrated and justifiably so.  

But you know what's also to be celebrated?  The fact that I'm in a wheelchair and it totally sucks and I hate it but I still have a true smile on my face.  

That is celebrating the real.  

Embrace yours.

MS Doesn't Care

MS doesn't care that I had a great time in Boston spending NYE with one of my best friends.

MS doesn't care that I spent a wonderful normal day with my whole family.

We're so normal it kills me

MS doesn't care that I was in DC for a week, engaging in the 2015 sales season as a consultant. 

The last time I had used this mug was during rehab summers...and I used it during my week of DC fun.  Yes, I feel the irony.

MS doesn't care that I was kicking it's butt for a good couple months. 

Because a few Mondays ago I was squatting down to get something out of my closet and the next thing I know I've fallen because I have no strength in my legs. 

"Oh sh*t".  

Obviously I'm no surprise to the whole "I was walking one moment and then couldnt the next" (see my MS diagnosis story for reference).  But let me tell ya, it sure as hell does not get any easier.

After the suggested 24-72 hours before contacting the neurologist/specialist (ok for real I gave it 9 days...I was hoping it was just a fluke.  A girl can wish right?), I headed to the office in hopes of finding answers. 

Can we just take a second?  I mean really, the above pictures were taken a week or two prior...and now I'm stuck in a wheelchair.  Whatttt...I just "can't even".

So what's going on is my legs have no strength  - it's a mix of ataxia, tremors, spasticity, and paralysis.  That last word is key, because I've had all those others before - it's this weakness, this lack of any strength in my legs that is so rude right now.  And then we have my arms/hands - some of the same.  The odd thing about this whole experience is my voice is not affected (in the past when I had these symptoms, dysarthria always accompanied it).  While it's a good thing (I can speak!!!), it also showed a level of concern that this is possibly a different lesion. 

There were three possibilities of what was going on : a pseudo-relapse (when symptoms flare due to stress or some environmental factor), a re-activation of an old lesion, or a new lesion.  Those are stated in the order of severity, less to more, meaning we were hoping for the first. 

I got to spend some lovely time in the MRI (I mean, we're basically bffs by now). 

And because technology is so cool (!!!), I heard from my specialist that evening: it was a new lesion.  

"Oh sh*t" again.

Now I'm no stranger to new lesions...I mean this summer I had three new ones - nbd.  

What's different about this is where it is - I have a nasty lesion in the back of my brain that has caused all sorts of ruckus (basically what kept me in the hospital for more weeks than I'd like to admit).  And this one is guess where?  Right next door. 

YES!  

Though we have a plan of action, it has yet to really take place.  The collective "we" (myself, the fam, the doctors, the specialists) believe the best place for me is home.  Which is great for me because I can be in my comfort and with my puppies and can have the help of/boss around my bros and parents. (Have I mentioned how awesome my family is?)

But it sucks a tad too because I feel some people only take things serious if you're in a hospital.  Like, well, I must not be that sick because Im at home. 

No love, I'm actually so sick that the hospital is the worst place for me.  

I know, it doesn't make sense to me most days either.

So my lovely family has been making our house as wheelchair friendly as possible.  Where as before I could get around the house with the help of my arm crutches, I'm not so lucky this time.  And the conversations we have, oh its humorous (like which 28 year old talks about chair stair lifts with their parents, for their own use?!?  And yes, when we get it installed you can test it out). 

While I wait I've been trying to keep busy and have had some lovely visitors. 

My lovely gf and neighbor, the newlywed Holly.  

An old-time friend and classic, Caroline, who helped me with the whole hair situation (holding a curling iron is kind of a hazard at this time).

The twin bro's had their SnowBall dance this weekend...dont they just look so handsome?  

I'm thankful that even though life literally got swiped out from under me again, I have the strength to get through this too.  

My legs don't work but my spirits are high.  

I'm asked often how I "deal".  

Good music, a puppy, and Starbucks.  Oh and the Lord.  (:

For real, I'll be the first to admit that there are moments where I just let it go.  It can be something so small (one day I got stuck in a doorway) and you'll be flushed by the words that come out of my mouth.  Somedays I wake up and the first words I say are "this suckssssssss".  

Then I laugh.  Because what else can I do?  

That's how I deal.  I could sulk, I could shut everyone out.  I could just lie in bed and pity myself to the point of despair.  

But guys, it's just a wheelchair.  It's just a lack of arm strength.  It's just an upside down reality. 

But really, it's just that.  

I still have love, I still have laughter, I still have my puppies and family and friends.  I still have sparkle.  I still have hope. 

Hope in what I'm not exactly sure - I'm really out of options at this point.  A cure seems way too far out and the drugs that come out have such high risks associated that it's hard to justify.  

I believe my hope remains in being able to face this tragedy with a smile.  And a kiss.  And maybe the princess, Miss America Wave.  

Or the middle finger depending on the day. 

I stay the course because I believe it will lead me to something wonderful.  

Meanwhile, I'll just keep sipping this starbucks. 

Waving from the wheelie, Eliz