Monday, May 27, 2013

Memorial Day #MSfail

First, I want to give my thanks to all those that have served our country, who make this Memorial Day possible with freedom.  And those who continue to serve, proudly.  Thank you.


One of the best days I felt in my MS career was the Friday of Memorial Day last year.  I woke up early (really early, like 6am early...for those that know my sleeping pattern now, be shocked) to have breakfast with Batman before he set out on another bat project.

I went shopping at Target (solo), riding one of those old person carts.

Went to the salon, had a few things touched up.

Went to dinner and movie with my mom and my oldest brother (Dad and the boy scout brothers always take a Memorial Day weekend trip).

I posted on fb that day "She walks!! Slowly, with a cute, plaid, burberry print cane...but still she walks!".  I was so proud.  No walker, just a cane.  Even the promise of no cane rang in the future.

My bedroom was half bedroom/half scrapbooking room at the time for I was to return to DC and my life at any moment.  I was getting better at this MS life thing. 

As I laid myself down to sleep that Friday, I could tell something was off.  "Perhaps the heat" I thought as I started to re-arrange furniture at 2am in the morning to have better access to the AC vent.  As things cooled off, I fell into a restless sleep.

The next morning I woke up to a nightmare.  I couldnt walk, I couldnt move my arms without great strength or power and worse of all, I couldnt talk.  Imagine waking up and losing that ability, the ability to communicate; just like that, no warning.  

Of course it was a freak-out for everyone.   It was the start of the chapter that led me to the hospital for a week and then a long couple weeks in rehab.  The chapter that made us all realize that my case of MS, in the words of the doctors, "was an extremely unlucky case". 

When I finally was dispatched and released home, my room was changed.  No more scrapbooking things, my suitcases unpacked in the dressers.  The harsh realization that I was here to stay.  

And stay I have been since.  

I've had a few good couple months since then...well, good weeks perhaps.  (:  And some fabulous days.  All to which I am so thankful for. 

But for the most part, the past three months have been extremely challenging.  Here we are again at Memorial Day and I'm in bed.  Not because I want to.  But because my body has no other way to deal with life currently.  

When speaking to the doctor's office on Friday, it was confirmed that Tysabri (the drug that I was infused with that eventually turned out that I was allergic to) was properly out of my system due to Plasma.  This is positive.  However, it also suggests that what Im still experiencing is due to this disorderly nervous system I've developed.  Damn you MS.

UPMC has been a great group of hospitals for me and they have (and will continue) to bring sparkle and light into my life.  I'll be forever thankful for their insight, positivism, teaching me to walk again, how to brush my teeth for goodness sakes and of course, I'll never forget the many bruises. (;  
And they will continue to be a part of my story.

However in a few weeks I'll be headed up to Cleveland Clinic (the top MS center in the nation) for an evaluation.  And then, I'll go from there. 

I'm so blessed with a beautiful life that I want to be able to enjoy it to the fullest I can, pictures along the way, spreading sparkle and love every chance I can, instead of having to spend it in bed.  

I'm a fighter.  I just need a bigger clinic.

So here we go, another year of how to heal, the sparkled life way.  Keep a smile on your face sparklers.  All things turn out the way they are suppose to in the end.

Much love sparklers and, to be patriotic, May God Bless America,

PS:  I did miss out on this weekend the wedding of my beautiful friend Kasey to the love of her life Brandon! Such a wonderful couple and a fabulous friend.  I wish you both the best.

PPS:  I also missed out on a very needed trip to see my bff.  Regina, we will be together soon!