The Sparkle Life Takes a Vacay

It goes without saying the past few months have been a little chaotic / intense.  

So to compensate for the lack of relaxation and entertainment, I packed my bags and headed East for a vacation.  

I also took a little break from writing; sometimes you just need a rest.  That and it's a little difficult to type.  Perhaps Physical Therapy for my phalanges in the future (I love that word).

My trip started with a few days in Philadelphia visiting my best friend Regina.  We did what we do best; that is, sitting on the couch in our matching pj's, watching tv and looking up random facts online.  

Yes, we really are that cool.  

One of the days while Reg was off being an adult and went to work, I headed to the coast to visit Ocean City.  It was extremely hot (with humidity levels a feel like temp of 115) but it was fun.  

I pulled extreme shoobieness (a shoobie is one who does not follow proper beach etiquette) and walked the boardwalk with a huge golf umbrella to protect myself from the sun.  People already stare due to the third metal leg that I decided it couldnt do much more damage.  

After a few days in Philly/NJ, I headed south back to the area of DC/NOVA.  I spent the first night going to a baseball game with my old company 3Pillar Global.  (Have I mentioned how great they are to me?  Check out their website). 

That was probably the hottest I've been all year; put 1000s of people together in a stadium with no breeze in 100 degree weather and watch what happens.  Sweat, smelly, sticky people everywhere.  It was very nice though; Im fortunate to have worked with some amazing people who I can call my friends. 

Saturday I spent with an old friend from my campaign days.  We lunched at a fabulous place in Old Town Alexandria, one of my favorite places in the area.  After 3 and a half hours of chatting and catching up on life I realized that there are just some people that God designed to have in your life.  She is definitely one of them.

Sunday I pulled a fabulous prank on my friend Kimberly.  Neither one of us had told the other that we were going to be in DC that weekend however I saw on her facebook that she was indeed in town.  So I had this great idea to call three times and leave a brief message of "Please call me" while sounding distraught.  She called back very concerned, to which I carried out the distraughtness, asking her where she was.  When she replied DC it was a great opportunity to change attitude to happiness and "guess what....me too!!!!".  

I realized after that I probably shouldnt pull these type of pranks on people.  She was concerned that I was given a few more months to live or that I was back in the hospital.  Whoops.  (:

Monday I lunched with some co-workers and past co-workers.  I then spent the afternoon in the office, sitting in on a business meeting.  It was fun to see some of the old clients I had worked with as well as some of the processes I helped put in place still around.  It was also enjoyable to see how far the company has come in the past year and few months.  

Being in the NOVA area was a little challenging at times.  That's where I was when all hell broke loose on my life.  That's where I was building a professional future.  That's where I had independence.  

In reality however, who I have become today wouldnt handle NOVA very well.  The overcrowded population, the lack of available parking, the unfriendliness of people on the street...these are all things that arent very sought out for in my life.  

There are moments in days where I really and truly dislike Multiple Sclerosis, the fact that I have it, the fact that I have an aggressive case, the fact that I have Parkinsonism, the fact that Im disabled (there's a lot to dislike currently). 

Overall though I am thankful.  I am thankful that I have the opportunity to have a slower paced life, to live in a city where you can get from one side to the other in less than 30 minutes.  To have established friendships that dont need hyped up outings to be considered fun; a Starbucks coffee date will do.  To have a new perspective on life and how to live it, to not take a moment for granted for you never know what tomorrow will bring or take.  

Its challenging to have this thought process I wont deny.  And though I had a nice vacation, the stress that it took on my body is significant.  It would be easier to not take vacations or leave the house or keep my head it. 

But then I'd have no adventures to write about. 

Love,

PS:  Please take the time and enjoy watching my audition video for The Voice.  I think I have great potential.

Found here : The Voice Audition Take 1

I dated The Batman

So, I dated the Batman.  

He has been mentioned a time or two (or many) throughout The Sparkled Life story.

Why am I sharing this story now?  The story of the fact that I dated the Batman (thus being understated that we are no longer dating)?  Because when book time comes, I want to remember that this was a large chapter in The Sparkled Life.  And it's a good story.  Even if its ending isnt perfect.

The Batman, you dated? you question.  For real, yes.  

Batman examining a bat in the net

Bats are becoming sick, which is bad, because as scary as they are, they protect us humans from bugs and such.  Long story short, some guys from England (I could have that wrong) went caving in a bat cave spreading a disease called "white nose syndrome".  This white nose disease kills bats and spreads quite quickly.  Thus the decline of bats.

Because of this, environmental protection has gone to the bats.  Before a company can build in a certain area or an energy company can put in lines, if its a protected area, a bat survey needs to be done by an environmental contract company.  

Every night during Bat Season, huge nets go up to catch said bats and to examine them for the disease.   There is a list of about 30 or so people in the US who are qualified to identify the type of bats caught.  Batman happens to be on this list.  So not only was this his job, protecting bats and doing bat surveys, he also was the qualified leading bat identifier. #nbd

After identifying the bat, a little tracker would be put on the bat that the team would then follow and hopefully find the bat's family.  This all would lead to whether or not the area was infected with white nose, thus determining the ability to build or not. 

I know all this not only because I dated the man but took part myself in a bat survey night.  Yes, me.  I think I ended up spending most of the night sleeping in the truck but I did help put up the nets and help set up tracking reflector tacks on trees so that we could find our way in the woods in the pitch black night.  #workinghard

So thus the nickname, The Batman.  

We met in early December a few years back.  He was the older brother of my roommate's boyfriend, who also was a friend of mine.  From day one we were "together".  There was quite a bit of an age gap (for both our sakes I will not mention how many years...but it was over a decade).  And we werent exactly what one would call, from the outside, a compatible couple.

Corporate America meets real life Batman.  Thats why I have to write this down.  It's almost epic.

The weekend I moved to DC was the weekend he took a job in Philadelphia, making our relationship long distant.  (Im not a fan at all of long distant relationships). 

But we made it work.  We would work from home on Friday/Mondays to extend the weekends.  Both our jobs/bosses were flexible (and I think intrigued with the relationship as well) that they allowed us the freedom to either work from home or office as much as possible.  

This led to every other weekend being spent very differently during off bat-season.  Weekends to Batmans would usually include going up to his cabin in the mountains in PA.  Weekends to me meant metropolis DC.  The extreme of two worlds.  

Yet both worlds had what we loved to do the most: eat, drink good beer, bike and listed to good live music.  Oh and people watch.  We loved to people watch.

Bat season would begin in May and he would begin his 70-80 hour work weeks anywhere their job took them.  We'd work around each others schedules as much as possible, sacrificing what we could (usually sleep) to see each other at least every other week.  

Our relationship wasnt perfect.  But we had our system.  He didnt understand my obsession with Starbucks but didnt raise a ruckus because I had the income to supply myself with my daily need.  I didnt understand his need to buy silly cars but he too had the income to supply himself with a garage full of cars so thus kept my mouth (mostly) shut.  

Then MS hit.  And as Im sure it would do to any relationship, it tested ours.  From March, when I was diagnosed, till August, we were pretty strong.  He was with me when diagnosed, held my hand, supported me.  

I attribute part of my ability to remain with such a positive attitude to his teaching and guidance, his ability to show me that there is always a happy thought to think about, even if its just my puppy for the day.  He brought me flowers every time, put a garden in my room (literally), gave me a mini-fridge for ice packs and always brought presents.

We thought I was going to get better.  I was going to improve.  We would go back to our system.  We would go back to the way things were. 

But it was becoming more prominant as the days went by that this wasnt the case.  

Break-up details are not needed.  In summary what can be said was that I/we became overly aware that we would never be able to go back to our system.  So we had two choices: 1, rebuild the box we built to accomidate the new situation, create a new system so to speak or 2, determine the box was built and could not be changed aka ending our epic tale.  

Eventually, no matter how you tell the story, choice 2 was chosen.  After last year's Bike MS : City to Shore, Batman left without me.

My ability to date Batman taught me a lot of things, and not just about bats.  It taught me that you have to work at love.  It's not easy.  Its not always romantic.  You wont always cuddle on the couch and say "I love you sooooooo much".  There will be times you will be annoyed by the other person.  There will be times you will have to support the other person, help them with their confidence and even suck it up and help them with their stitches when they fall or cut off half their finger. #gross

  

It taught me my approach to love: you fall into love, you choose to stay in love.  Its a choice to stay in love because it is so difficult; but if its the right person you do it anyway because of the love, because of the person.

We fell into love fast and quick.  We choose to stay in love through lots of ups and downs.  But eventually, that choice to stay in love came to a halting stop as it became relevant that there was now a third person party aka MS that wasnt exactly loved, messed with our system and was no longer wanted.

And while I'm sure the break-up wasnt easy for Batman, he wasnt the one left behind with MS lingering like a black cloud.  I was.  

I get asked from time to time if I still love Batman and I reply "I always will."  I fell in love with him.  We went through the most challenging time of my life together in love.  But then one day we choose not to share in that love in a relationship.  That however does not change that first love falling. 

There is no easy way to leave behind loved ones, so I dont; I just move on without them physically but with them forever in my heart instead.  

To end this post, I'd like to end with a picture (of course we have a break-up picture...it wasnt on purpose...only coincidental) and my thoughts towards it.  I believe it sums it up perfectly.  

The break up picture. Some nice man took an innocent picture of two souls, one still on a bike and one in their wheelie, after the completion of Bike MS. What he did not know was this moment was actually the start of our official break up. The talk that made it apparent that MS didn't fit in the relationship. However, only one got to walk away without MS. I'll be forever grateful for this picture; it's beautiful, just like our relationship was. What's invisible is MS, the poison that broke that beauty. That's life. I'm grateful for him, our love and like this picture, I'll always have a piece of it with me. And one day, I'll find a new love and Im confident it won't end in shadows.

Love,

PS: Batman, if you decided to actually come across and read the blog again, thank you for all the memories, for being there for me when you could and for loving me when you did.

0 to 100 to crash - A Step-by-Step How to Sparkle Style

The first lesson taught to new MS sparklers is that if you push yourself too hard, it wont do you any good.  You will crash and pay for it.  

Pace yourself.  The steady one wins the race.

That is a great lesson.  And one that should be heard, learned and practiced.

However, after spending two months in bed, this lesson might not be the first one that comes to mind.

Hence, 0 to 100 to crash - A step-by-step how to Sparkle Style

Step 1: Go to Plasma Exchange.  Never stop finding the ironic theme of blood and Team Edward.

Step 2: Head home and give yourself a Vitamin B injection.  Receive a really funny card, flowers and gifts.  Laugh.  All while actually doing your hair (first time in months).

Step 3: Celebrate your bff's graduation with his MBA at the ol' Burgatory, surrounded by his family and friends.  Enjoy every moment of it.

Step 4. Reconnect with an old friend for a Starbucks.  Share thoughts, tears and be given roses.

Step 5. Celebrate your wonderful mother on Mother's day.  (She's pretty awesome).  Attend mass, go see Iron Man 3 (so good), give her a funny card.  

Know you are lucky to be a mom to the best puppy Sputnik, who gets you and his "gma" Blake Shelton tickets.  Also, send good wishes to your wonderful Grandma in Colorado.  

Step 6. Crash.  Be thankful that you were even able to have a weekend as such and then spend the next 48 hours or so in bed.  

Step 7. Go to hospital for 4th Plasma Exchange. Tell your nurse that your veins are rough and to be nice and have her not listen.  Have the nice nurse come to the rescue and find a better vein, all while having your so thought clotted vein explode and blood go everywhere.  

Step 8. Go back to bed.  Be thankful for what you have.  Know that you are getting better, even if slowly.  Drink a Starbucks.  Text a friend.  Hope.

Hope you all enjoyed your weekends and Happy Mother's Day to all you wonderful mothers!!

Love,

Plasmapheresis - a fancy blood thing

Today I had my first second round of

Plasmapheresis

 also known as Plasma Exchange.  

First time around blog account found here in archive: http://sparklebutonce.tumblr.com/post/25201647753/plasmaexchange

According to the National MS Society:

The vast majority of people experiencing acute attacks respond well to the standard high-dose corticosteroid treatment. According to the guidelines, plasma exchange should be considered a treatment alternative only for the few who do not, and only for a short time.

I love how my MS always falls into that little percentage catagory.  #princess

I was fortunate enough to have this procedure done with the same doctor and nurse as the last time, which I loved, because they are very nice.  

What was weird about the adventure was that the procedure was done at Mercy, where I was in rehab for about a month.  Last night as my parents were going through their head the best route to get there, I realized I had never actually driven to Mercy.  I'd been taken by ambulence, went on a field trip in an ambulence and then left.  

So today while choosing the valet route, it was very surreal.  And weird.  And made my stomach hurt.  That was a good yet rough patch of The Sparkled Life journey and in a flashback I was there again.  Because I wasnt better.  

Yet we hope.

So what does this fancy blood thing do?  It takes out your blood from one arm, puts it in this loud, shacky machine, takes out my plasma, puts in a donors and then goes back into your body through another IV in your other arm.

 The hardest part is squeezing the ball for 2 hours straight.  

The first picture is the taking out blood arm, the second is the plasma and the third is the blood that runs across me. #stunning

It doesnt hurt.  It's more yucky because there is so much blood.  Everywhere.  Running through tubes across you. 

 Yes they keep the pressure cup on you the whole time.  It helps with the blood flow.

I prepared properly for the event by listening to the Twilight soundtrack.  I made sure to wear comfortable yet fashionable and meaningful clothing.

What I wore: Comfty breezy shirt (American Eagle), skirt and leggings (Victoria's Secret), BFF pink forever zip-up, trusty hospital Toms and the essential Starbucks.

The Doctor wanted to get an extra .2 portion of plasma in me however, like always, my veins decided they were done and collapsed.  I have a pretty ugly battle wound growing on my right arm that is sore and hurts.  

 My veins hurt.....

This will be done every other day for 5 treatments.  The last time we did this we did see some relief and we are hoping for the same.  

A year ago we were saying the exact same thing but....hell, I guess someone really wants The Sparkled Life to become a "thing".  (PS: the new blog has hit over 3400 page hits since its "opening" in March 13.  THANK YOU so much to all your MS Sparklers.  You have no idea how much the support means!!!! Keep clicking away!!!!)

Arriving home I put on my Team Edward shirt and called it a day.  Mom kept on her sparkly shirt in support.  And everyone has been so wonderful texting and messaging.  It means so much.  

I want to thank everyone who donates blood and plasma, as well as those that work in blood banks and the such.  I wouldnt be able to do this procedure without your help.  It really does save and change lives.  Thank you and keep it up!! 

Love, Eliz

What I'm Learning about Friendship. Part 1.

A while ago I wrote a post on "What I know about Love, Part 1" (found here in archive: http://sparklebutonce.tumblr.com/post/31418225534/whatiknowaboutlove).  

Now, it's friendship's turn.  

I always say Part 1 because I believe these subjects (amoung many others) have continiuos lessons to be learned from. 

So cue Part 1 Friendship.

Not many things can test friendship, or even love for that matter, more than a chronic disease or disability.  No matter what occurs, things will have to change.  This I am learning.  

I mentioned the other day a movie I watched that really moved me..."A Little Bit of Heaven".  I bring it up now because I believe it shows perfectly the types of friendships that occur in cases such as this.  

Friendship can essentially can be broken down into 4 groups:

1. The "Im right next door" friendship.

This is the friend that is the doer.  The one who knows you need some swedish fish and will bring some to you asap.  The one who is going to have you just sit down, drink some chardonnay, while they prepare a huge Italian dinner.  They know your needs.  They know you're sick.  They mix the both together and make your days.

In the movie, this is the guy friend who lives next door, cooks and walks the dog whenever needed.

2. The "I'm right around the corner" friendship.

This is the friend that even though you might not text or hear from daily, you know they are there no matter what.  They'll surprise you with a little note in the mail.  They'll answer your texts with sparkly emoticons and hugs and kisses.  They know your needs when you present them to them and answer to the call when needed.

The movie doesnt really have this friend character but I felt it important to define. 

3. The "Life is the same" friendship.

These are a very beautiful friendship.  The one's who just treat you the same.  Yes, they understand the drama of the situation.  They know this is serious.  But it's not going to change anything.  In the friendship or how they perceive you.  You will always be that same, strong friend they fell in love with and will treat you the same.  Yes, there will be times in which things will need to be modified and this will be done; but in sort of a "unspoken" way.  Not ashamed way.  Just, this is the new normal way.  

In the movie this is the best friend/business partner.  She treats each day as if just like before.  Even in the last moment she is smiling and supporting her friend.   

4. The "I dont know how to do this" friendship

I've debated on what I wanted to say about friendship for a while now.  Because I've been so blessed to have friends who have gone above and beyond in the 1-3 categories.  I'm so blessed by those I'm surrounded with.  They keep me going daily.  They keep me smiling. 

But since this is my story, and thus, the backbone of my book (getting ahead of myself here), I felt it necessary to express my true feelings on all types of friendship, even those lost.  

It may come off as bitter.  Please read to the end.

This friendship is defined by the ones in my life that just couldnt handle the change.  It interferes too much with their life and they dont know how to respond.  

There is one friendship in particular.  This friendship was very dear to me, had been for over 7 years.  

The friendship was defined mostly by a 60/40 effort, me providing 60.  It's not that this friend was selifsh; it's just how it was.

So when I was diagnosed, that 60/40 went to 0/100 overnight.  And this friend "didnt know how to be the friend that I wanted".  Looking back in hinesight though, I dont think this person meant offense.

In the movie, the character's bestest and longest friend finds out that she is pregnant with baby number two the same time the main character receives her chronic diagnosis.  This friend doesnt know how to enjoy her life, handle her difficulties while also trying to support her friend.  So she disappears.  Because what else can she do?

This is almost the exact same story, minus a baby.  My friend was going through life changing experiences, both good and bad, at the same time I was diagnosed.  This friend has expressed that they didnt know how to do both; how to function their life and be in mine as well.  

I shouldnt pin-point one friend.  There have been quite a few, even a love.  

Sometimes people build their boxes and when change occurs dont know how to build around it.  Whereas others, they build as they go on in life.  

I cant deny how upset this has made me, how many tears this has brought me.  Because not only have I lost a friend(s), but it's a slap in the face that my life is so different that persons cant handle it.  I'm such a hindrance that I am cut out of lives.  It hurts. 

Everyone has their own mountains to climb.  And for some, their mountains are not this one, with me, in the sparkled life.  And I just have to accept that.  And move on.  

There is a beautiful scene in which to conclude this friendship type on.  

The main character goes to her friend's house.  The friend who didnt invite her to her baby shower ("it's complicated"), to the friend who doesnt bring dinners, doesnt sit in the park, who doesnt even open the door when it's knocking, who isnt there in the last few hours of life.  

This quote sums up what I want to say to my friends who have treated me like this:

"I'm sorry...it really hurt me when you started distancing yourself, but it's ok.  I get it.  A new baby coming and me leaving...it's not fair having to be so happy and so sad at the same time.  Our friendships is one of the best things in my life and I'm sorry I'm not going  to get to know that little boy, but I know he'll be beautiful, just like Cami (the older sister)...and please, when she get's older, tell her that I love her like she's my own."

Except I'd say the quote without babies.  (:

In summary, for this portion, I just want you to know that I'm sorry you had to choose between your life and mine.  That it got complicated.  And I'm hurt by what happened.  But I understand that again, not everyone has to climb this with me.  

In summary, for this post, I am SO thankful for all the friendship that I do have.  I am BEYOND blessed.  I look around my room, with framed pictures of memories and events, of faces and I love and love me, just the way I am.  Multiple Sclerosis and all.

And for what it is worth, prior to me realizing how important it is to be a good friend, please consider this an overall apologie for all those times I wasnt a good friend.  I am working on it. 

Love always, Eliz