Things about me, part two

Im so over writing about MS things that I decided to go the therapeutic route and write “Things About Me, part 2”.

I feel somewhat better now. ♥

http://www.thesparkledlife.org/2013/05/things-about-me-part-2.html

 

Love, Eliz

 

What I’m learning about friendship. Part 1.

It’s hard to go through friendship with a chronic disease.

How i’m learning…and surviving…

http://www.thesparkledlife.org/2013/05/what-im-learning-about-friendship-part-1.html

Much love sparklers, Eliz

The Severity of my MS is Helping the Economy <3

Today’s silver lining as The Sparkled Life continues on in the MS Journey.

“Hope. I believe in such a little word SO hard and only can remain optimistic that it believes in me as well. I need it to.”

http://www.thesparkledlife.org/2013/04/the-severity-of-my-ms-is-helping-economy.html

Love, Eliz

A turning of the page….

Ended/turned the page of two chapters of my life today.

(The fact that goes with the feeling of “uhhh my life?!?!”)

Read more on The Sparkled Life website, http://www.thesparkledlife.org/2013/04/a-turning-of-page.html.

Love, Eliz

Pride vs Truth

My mom has said to my twice now (if not more), since the beginning of “The Sparkled Life”, that sometimes I only show the good on this site…and forget to show the bad. 

Not that every post must be pessimistic.  It’s just that it is often protratyed that I’m better off than I actually am.


I answered with Pride: if I told the truth, who would then want to be my friend? Who would want to hang out with this girl? Who would want to date this girl? Who would want to take this girl seriously? Who would want this girl on their team? 

I’m too much to love, too much of a liability.

My pride wants to “sparkle” my misfortunes out of fear in that showing my weaknesses, I’ll be left alone for the fight.  Im afraid that people will eventually stop messaging me, stop asking me to hang out, stop wanting me in their lives. 

Its already happened with some.  So maybe that is why my pride built these walls.

But this time, truth must trump. 

Because, if my end goal of this trip, The Sparkled Life, is to create Multiple Sclerosis, then Im not only doing myself a disservice but all those fighting the fight as well by not sharing. 

The truth is, I’m really, really sick. 

So sick that at the moment typing this draft is causing me pain.

Starting last Friday and trickling down through the week, my body relapsed to a bad point.

The real truth is that MS is destroying my body.  And overnight, it took all my hard work of fighting MS away, without even asking. #howrude

Yesterday was suppose to be my 4th infusion of a drug that is/was suppose to help me manage this disease.  However, once the hospital saw my condition, they immediately sent me to the neurologists to figure out what the hell was happening.

I can confirm that yesterday made it on the list of 5 worst days of my MS journey.  I wont go into details but rest assured, it is up there.

The humor of it all was that during the chaos, my mom held my phone to answer phone calls, texts and emails.  This is currently what my phone looks like:

(this is my “Today is ugly and I hate MS face”)

At least we could find the humor, bunny ears and all.

To spare details, today went a little bit more smooth.  A hospital visit, another MRI.

(making hospital gowns look good since March 2012)

Honest truth: I wear the sunglasses to hide my worn, tired, cried on face.

We have no answers yet, no confirmations. 

My team of doctors want what is best for me, they really do care and will start Monday on additional tests, treatments, therapies. etc.  I have faith that the next steps will help bring me back.

So, again, the truth is Im very sick and I need, no, I beg, for your prayers, for your good vibes, for anything you have.  

I’m tired of being that girl who one day is walking around town with her third leg to the next not being able to hold a fork, walk, type and trembles with pain all throughout her body.  I’m so over it. 

Sparkle I will forever.  But those sparkles are now arriving in tears of discouragement.  I need your love.

Thank you.

Love always, Eliz 

A word to the wise…

I interrupt this sparkly journey for a moment of, conflict, perhaps, words. 

Ive been known to be a little aggressive on subjects that matter to me.  More so in my past than now.  But sometimes that little spark flies again and I feel that I have no choice but to speak up…or rather type it out.

#mstrumpcard

I have MS.  Currently, there is no cure for Multiple Sclerosis.

There is not much known about MS, except for some variables that include Vitamin D, living above a certain line across the hemisphere, being female, etc.  But even those variables dont have the answers as to why behind them.

So with all this unknown, my first warning when diagnosed was to never believe anyone who can say they can “cure” MS.  It is incurable.  I am sorry to burst the bubble. 

Research is done daily and I know we are close.  But there is no cure at this time.

Some items are known to help relieve the symptoms and the pain.  Such as acupuncture.  But even my acupuncturists, on first meeting her, probably one of the most natural people I have ever met, said that she can help me feel better but she could not cure me. 

This is all said to lead up to the purpose of this writing portion: if one sends me a message or says that they have heard of a cure or know of a way to cure MS, etc, etc,… I find it degrading to the disease that I have to fight daily, I find it degrading to my being.

I will not deny that there are natural ways in which a person with MS can help relieve their symptoms (as mentioned above). 

But anyone who claims they were healed of MS by a certain product is either pitching a good sales pitch or didnt have MS in the first place.

MS causes scars, lesions, on the nervous system.  These scars cause disabilities.  They cannot go away. 

And when someone who has a serious case of MS, to present flashy statements in her face is a sure way to light a fire of disdain.

As I said, it degrades my fight. 

How i WISH there was an easy answer.  How I could eat some fancy shakes and use essential oils and be “healed”.  But this is not the case.  Yes, Im on medication that isnt exactly lovely.  I dont like being a pill popper or infusion user.  At all.

But its a quality of life issue.  Without these medications, I wouldnt be able to function.  I would get worse daily.  And excuse me, not to be morbid, I’d be led to an even earlier death. So please, dont mind if I take a few pills so that I get a more full-filled life out of it.

It degrades not only my fight I fight daily, my fight to get out of bed, but also the fight of 1000’s of others who are fighting the same.  The fight their families are fighting.  The fight their doctors are fighting.  The fight all the Multiple Sclerosis associations are fighting.

It degrades my work to create awareness, all those walks, all those bike paths, all of it.

Yes, live healthy.  Live strong.  But please respect my disease and my fight enough to not underestimate my daily battle. 

And educate yourself.  Know what you are preaching prior to sharing. 

I know why people share this information; because no one wants to see the pain.  An easy answer is a great solution.

But we arent there yet. 

So instead, help me by believing in the powers that will lead to a cure: prayer, positive energy, MS Awareness, hope. 

We will find a cure.  It will most likely be a combination of all the efforts out there, natural, alternative and medical.  And when that day comes, we will celebrate.  We can exchange messages on what great a day it is.

In the meantime, please feel free to share articles of positive research, positive movements.  I encourage it and appreciate it!! But no more “cure MS” please.  Im so over it.

Respect my fight.  Respect our fight.  Help our fight.  Please dont discourage it.

Love, E

One year. Done and sparkled.

Today marks the 1 year anniversary of being diagnosed with Multiple Sclerosis.


It’s been, thus far, the longest, hardest, most painful yet most exciting year of my life.  This is an affirmative.

I spent my 1 year day with my family, Starbucks, one of my best friends at one of our favorite restaurants for lunch, came home to a box of goldfish and Starbucks giftcards (thank you!), had a good cry and treated myself to a hot shower.

I havent had a “hot” shower in such a long time…the heat is bad for MS, this we know.  My showers usually include a light warm water stream with a blast of cold at the end.  The hot shower was quite a luxury today.

A year.

March 20th 2012 was a bad day.  I had already lost feeling in my legs and I was very concerned.  I decided that if I woke up the next morning and it was worse, I’d call the doctor.

March 21st was a Wednesday.  Wednesdays were BD Meetings at our company.  Since I was the BD Manager that meant arriving a little early, prepping the conference room and such. 

That morning my alarm went off and I sat up to get out of bed.  It was then that I realized it was worse.  The loss of sensation was up to my abdomen.  When I took a step to walk, I had to tell myself “move your leg”. 

I had a morning full of meetings.  I kept telling myself “get through them, efficiently, then call the doctor.  You can do this.”

When my agenda finally caught to a breather, I called the doctor I had seen a few days earlier.  I told her what was up and she said to go the ER. 

So I went.  As I’ve shared before, I sat in the parking lot of that hospital for about 30 minutes, just sitting.  First, I was alone.  I cant deny I wasnt scared.  Second, I kept going over “what if this isnt just a virus?  What if this is bad?”.  Third, I didnt want to walk that far.  (:

But I did.  They got me right in, admitted and sent to a MRI.  Worst MRI of my life.  My legs were starting to contract and I couldnt hold still enough for them to get good pictures.  It took forever and I remember there were some tears.

After the MRI, I returned to my room.  I was asked a LOT of questions by various doctors for the next few hours.  My head was spinning.

I thought they might let me go home.  Shows how little hospital experience I had…admitted meant an overnight.  My first hospital overnight. 

It was 10:30pm and I was going to brush my teeth and wash my face prior to bed.  When I came out, the nurse was there with a phone. 

On the other end was the neurologist.  He had looked over my MRI scans.  He confirmed that I had multiple lesions (8-10) on my brain, neck and spine.  We would run further tests but he was confident of the diagnosis.

I had Multiple Sclerosis.

As I hung up the phone, I was a little stunned.  And very naive.  So naive.  We all were. 

MS.  We knew people with MS.  They live just fine.  They go on to have full careers, have families, live dreams. 

These MS sparklers still suffer, I dont deny it.

But a year later, here I am.  Stunned still that this is my life, so far from the MS life I had googled and confirmed I would have that night a year ago. 

I’ve spent the past year “keeping my head up”, staying positive, living each day because “its gotta get better”. 

And I’m stuck, because no matter what I do, what we do, what the doctors do, I’m still very sick.  I hide it so well somedays.  Today is not one of them.  I’m tired of being sick.  I’m tired of MS.  I’m tired of doctors, of MRI’s, of needles, of medicine, of appointments, of not knowing how I’ll feel tomorrow.  Im so tired.  And we’re only through year 1.

With that said, I have much to be grateful for.  As tired as I am, I can see the benefits that have come out of this year.  And if I keep my eyes and heart focused on those benefits and blessings, than I can only imagine what the extra years will bring. 

Hope.  I dont really have any other choice.  So I just keep repeating it and believing it.  As hard as it gets.  Hope.

Yes, I could spend every day crying over this experience.  And I do cry at times.  I believe it’s healthy to let tears fall; its an emotion. 

But in the words of Adiana Lima with regards to crying (and limiting it), “my mascara is too expensive.”

So with that, year 1, you sucked.  But you were good too. 

Cheers to that.  Cheers to moving forward.  Cheers to friends, family and puppies.  Goldfish, Starbucks and Champagne. 

Cheers to you.  THANK YOU.  For helping me get through year one.

Much love, Eliz

PS: this song has been going through my head all day.  And while it doesnt exactly apply, it does have some underlining connection.  Rolling Stones-Wild Horses.

Bike MS: City to Shore 2013 Planning Meeting

Today I attended my first meeting in quite some time. 

It was via Google + meetings and the meeting topic was “Bike MS: City to Shore 2013 Planning Meeting”.

For those that may remember, we participated in Bike MS: City to Shore last year with Team Sparkle, raising over $12,000.


The planning team asked me a bit ago if they could use my required “Why I ride” quote from the registration for their 2013 promotion.  Of course I answered yes.


And I’ve been so humbled because they’ve taken that quote to their facebook, to their email campaign, to their mailing campaign, etc.  Quote and more.  It’s been such an honor. 

A few days ago the planning team asked if I could be so kind and say a few words at their opening Planning Meeting for this year’s Bike MS: City to Shore. 


Which occurred this evening.

And it was quite an honor. 

The “speech” I gave:


Thank you Nicole and thank you Bike MS: City to Shore team for having me speak here today and for allowing me to help create awareness for the disease that has so taken over my life….literally

A year ago I was gladly defined as a corporate girl, climbing the corporate ladder and fortunately, despite the economy, corporate world was good to me. 

I had completed my MBA and was working as a Business Development Manager for a technology company.  Every sacrifice I had made to get to that point made it so worthwhile; for I was witnessing my dreams coming true.

Then, a year ago, to the day, I realized there was a slight problem: I couldnt feel my legs.  I woke up March 21st and I couldnt feel up to my abdomen.  It was suggested by my doctor that I go to the hospital, led to believe it was most likely a virus.

So I went.  Up to that point I was perfectly healthy and this was actually my first hospital admittance.  After a long (gotta love it) MRI, it was concluded at 10:30pm that evening that I had Multiple Sclerosis.  They had found 8-10 lesions on my brain, neck and spine.

As naive as we were about MS (at the time, I didnt even know how to spell sclerosis), we were optimistic.  Fortunately this has stayed our constant theme.

After a steroid treatment, it was suggested I go back to Pittsburgh (where my family lives) to spend a few weeks.  I was living in an apartment three stories high, alone and the suggestion to move back to my parents was a good idea and place for recovery.

But a couple weeks turned into a couple months. From March through May I went through 4 additional steroid treatments, many more MRI’s and stumped many doctors.  I wasnt getting better, only worse.

But then one Friday I did feel better.  I drove myself to Target, got a Starbucks, even went to a movie. 

And then, I woke up the next day without the ability to talk, to walk or to be able to do fine motor skills.  Just like that, overnight.

I spent 2 weeks in the hospital, then moving on for 4 weeks in rehab.  Steroids were already counted out as they could provide no relief.  I had 5 plasma exchanges and this provided me enough positive change that the doctors allowed me to go home.

It was during this time that we, my family, my friends, my community, realized MS was here to stay.  In the words of my MS specialist “I just have an unlucky case of MS, lesions in unlucky spots”. 

I’ve never been lucky so I didnt find this too discouraging.  Rather, we kept up the optimism and kept on moving forward. 

Though the doctors had done “all that they could” and I was on a disease management drug, and various other drugs, I was left with permanent disabilities.   It was and is still today, challenging.  I also had to leave my corporate world for the world of disability, a humbling experience.

Two positive things came out of this realization that MS was now my life: The Sparkled Life (my blog) and Bike MS.

The Sparkled Life began as an easy way to update many people on my status.  One blog update vs. 30 emails…I’ll take it.  But its grown.  It’s been my ability to express my words when I couldnt speak as well as an opportunity to share MS Awareness.  So many gifts have come from the sparkled life and I look forward to continuing its path.

As for Bike MS…it was also fortunate find.  I am the eldest of 6 kids.  My dad is an avid cyclist and thus, so are we.  Prior to being diagnosed, I was biking 20 miles,5 times a week on my recumbent.  It’s what we did,  together or apart.

As we researched a little more about Bike MS, we discovered City to Shore.  Upon finding it we decided right then and there we had no choice but to ride it. 

My dad grew up on the Jersey shore, it’s where I was born, and lived for most of my childhood.  We actually lived in Ocean City two blocks over from where the race ended.

So as I worked with outpatient PT and OT to help with my disabilities, Team Sparkle, our team, started to prep their legs and butts for the long two day ride.  Team Sparkle was a team of the men in my life, joined because they knew they couldnt fix me.  They couldnt heal me.  They couldnt take my pain away.  But they could bike for me.  And so they did, without a complaint. 

I had a moment one day in August, realizing despite all I had lost, I still had my ability to bike.  We had two recumbent bicycles in our house I used often and it was what we used for PT exercises. 

So hell, I decided to join Team Sparkle as well.  We found a tricycle recumbent (since I have issues with balance) and we were ready.

Crossing the finish line at Bike MS: City to Shore I was overcome with emotions. 

First, hardship: all these people were here because of me, because of a disease I had, a disease that leaves me most days in bed or in a wheelchair. 

Second, humbleness: again, all these people were here because they believed in me.  They believed that the daily fight I fight is worthy of a cause.  And a long bike ride.

Third: hope: MS is a challenging disease.  Many people do not understand the disease or what it is like to be diagnosed with it.  Add on top of it that you’re 26 and already far down the road of a disabling MS case, it can be a hard burden to carry.  But to witness all the people who biked, who volunteered, who planned the event, YOU provided me with enough HOPE to last all year.

As already expressed, MS has taken away a lot from me, leaving me with disabilities in their places.   It causes fatigue to the extent that I’m happy if I’m out of bed for more than 6 hours.  It took my corporate dreams and ladder and drowned it with many other of my dreams.  Its even cost me relationships, for some people do not know how to cope with MS or disabilities. 

But it hasnt taken my sparkle, it hasnt taken away who I am.  And it wont. 

Because, as my tag-line says, its a very simple answer as to why I Bike MS: to show, at the end of the day, who is, still, the boss.

I want to thank you, for allowing me to speak to you today but more importantly for your work with Bike MS: City to Shore.  I’m just one of the 1000’s who you help provide hope for, a hope that keeps them, me, fighting and sparkling.  Thank you!

I will always be thankful and honored for this opportunity.  And how fitting that it occurred on the eve of my 1 year Anniversary of MS. 

I come from a faith filled community.  When first diagnosed, I was greeted with many “I’ll pray for your healing” sayings.  When it was becoming apparent that I was not going to be healed from MS, I could sense the discouragement in people’s response.  “Well, I’ve been praying….”. 

Eventually I just asked people for prayers of support, hope and the ability to take this diagnosis and use it as a way to create MS awareness.

Well, God heard that prayer.  Why He choose that prayer over the healing prayer I’ll never know. 

As I mentioned, tomorrow is my one year anniversary with MS.  Look where a year has brought me to with regards to creating MS Awareness. 

With The Sparkled Life tumblr alone:

  • Visits: 11,743
  • Unique Visitors: 3,776
  • Page-views: 31,682

And then with this honor of partaking in the Bike MS promo, which speaks for itself.

I cant deny that there’s some reason behind it.  As ugly as I get at the disease and what it has done to my life, I have to trust that it will be used for good, for MS Awareness. 

So that one day, a girl with MS can wear heels and walk normal because there is medicine, there is a cure. 

If I cannot, then wear yours proudly.  For the future ones.

Much love, Eliz

(ps orange love necklace…perfect MS awareness piece! From ReduceReuseRenique aka friend Nicole)

my political (past life, short lived) career

I feel like a cat sometimes.  A cat with 9 lives.  But instead of lives, it’s careers, chapters.

Before business, before technology, before higher education, there was politics.

I started my political career in 2003, when George W. Bush was running for re-election.  I worked with various organizations on bringing the voting power to the swing state of Ohio.  I had two high achievements that year: 1, putting together a public event for “Get out the Vote” tour with Sean Hannity and 2, receiving an official letter from the White House thanking me for my work.


Heading off to college, I didnt know exactly where I wanted to land in the political world, but I knew thats where I wanted to be.  I began and completed my BA in Legal Studies, a pre-law program.  During my three years of schooling, I participated in many political events on campus.  Off campus I worked in 2006 for a Senator in CT and in 2007 I spent the summer in Iowa working with a Presidential candidate with regards to the Iowa Caucus.

image

(Presidential Candidate and I)

I was good at politics, if I may be allowed to brag.  Though I didnt recognize it at the time, I treated politics as a business, campaigns as a project.  Strategies were built around the principles and promises of the candidate, the products so to speak. 

It was also during this time I learned how to gain that oh so lovely sales quality of trust.  I could walk, door to door, passing information on our candidate, with a smile and a “You can trust me” handshake, winning votes. 

Then one day I was sitting outside, watching the stars.  Random that I remember this moment.  And one day I will write further words around it.  Now isnt the time to point fingers and name names.  However it was during that moment that I realized I was doing it wrong. 

I joined the political world because I wanted to make a difference.  And I thought I was.  But only for some. 

For example, the candidate I worked for had a strong stance on the pro-life issue, of guarding the unborn.  I believed in that.  But while standing for the rights and for the love of the unborn, the candidate, and those on the campaign, myself included, were disrespecting the lives of the living.  We would bash other campaigns.  We would protest other events.  We would play dirty politics. 

To win.  That was the end game.

And at that moment I realize that it wasnt my game anymore.  I wanted to love everyone, regardless of born or alive.  Regardless of democrat or republican.

Yes, we may disagree on issues.  That is called democracy.  That is called freedom.  And why I have my own opinions on what government is doing right and/or wrong, Id rather discuss them than fight over them.   

At the end of the day, I decided to just be an American.  Red, white and blue.

I left the campaign three days later.  Came back to school, pushed as hard as I could (including taking 22 credits in one semester) and graduated a year early. 

And that is where I found business and higher education admission consulting. 

But I still kept one foot in the political world.  More on the consulting/volunteering side however.  For three years I worked for CPAC, meeting just about every Republican and Tea Party person there was (including Ron Paul, my favorite). 

image

(some of my favorite CPAC ladies)

I ran into (literally) a Sarah Palin and John McCain rally one time during a business trip.  I was dressed in a suit and it was raining (my meetings for the day were done so I wasnt concerned).  I walked in with the right crowd however for security thought I was “part of the Palin party” and escorted myself and two older women to the front.  Granted, I could pass as Palin’s cousin.  Back then.  Her new additions to her face have changed that resemblance somewhat.

The same trip I took the back way out to beat the crowds (campaign crowds are always…interesting) and while doing so ran into John McCain.  He is a lot shorter than he seemed on tv.  It could’ve been the heels I was wearing that day as well.

I also spent 10 seconds of fame on Drudge Report back in the year 2008.  I was working for CPAC and in our “contract” we were asked to exclude ourselves from any interviews.  I was approached by a young, dishevled man who didnt ask for my name, just wanted to ask a question, with a little hand held camera.  I told him sorry, but I cannot as I showed my badge.  He said it was for a school project.  Which I believed.  His question “which candidate will you vote for?”.  Since it was just for a school project, I decided to pull one of my ditzy reporter voice and moods and responded with an answer that went something like this: “Well….most likely Romney because his sons are like soooo adorable and cute.  Their hair.  Omg.  Yes Romney.”

At the end of the day CPAC always holds parties.  As I entered one of the ballrooms, some kid pointed at me and said “look, its the girl in the pink shirt from that video on drudge!”.  I had worn a hot pink shirt that day.  Points for me.

image

(Before the coffee am of the “oh so lovely drudge ditzy” video)

Eventually I retired too from CPAC world.  This past election I didnt even raise a finger, mostly because I was pretty sick. 

But it is CPAC week now again in DC.  And I cant deny that I miss it a tad.  It is glamorous.  Great outfits, lovely shoes, meeting famous people, chick-fi-la for almost every meal, ending the nights with wine, making friends, discussing politics. 

image

However, I dont miss leaving the political world.  There are some people cut out for it.  I was for a few years then retired early.  Enough time to write a book about it while still getting out without any wounds. 

Why this long story?

Because, while I feel I have lived “many lives”, or rather, have various chapters, I will say that I came back after the summer of 2007…different.  Something had changed.  My heart, yes.  My dreams, yes.  But also (and I am speculating), my health.  If I had to pinpoint a time in which I felt a bodily change, it would be then.

Its all speculation.  Doctors will never say when my MS “started”.  It could’ve been years prior to that.  But that summer had something to do with it.  Maybe it was the “get out of politics” card I needed to prepare myself for the storm ahead.  Who knows. 

In the end, I feel that that summer did end one chapter and began anew.  The one that led me to where I am today.  Where I am today isnt exactly where I wanted/want to be. 

But if I may be so bold….I feel as if I am a good person.  I am surrounded by fabulous friends and family.  I know what it takes to listen, to smile to strangers, to not judge.  To suffer, to cry, to know that life is full of disappointments.  And then to recognize at the end of the day, life is still precious.

We’re a week away from my 1 year MS anniversary.  During this week I will be approaching two goals: 1, recapping the moments leading up to March 21st (more for my sake, for documentation for future reference) and 2, thanking those who have been along with me for the ride.

It’s been a hell of a week.  It’s been a hell of a year.  It’s been a hell of a life.  And I’m only 26! 

If I can only but learn and share one lesson it is that life goes on.  It takes months, tears, bottles, shopping, starbucks…whatever your recipe is.  But tomorrow’s will come.  New chapters will begin. 

And as I ask God tonight why in the hell I’m where I’m at today instead of where we, or at least I thought we, had planned upon, I hold on to that lesson.  I hold on to the next chapter.  Or rather, the continued chapter of…

the sparkled life.

Love, Eliz