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https://www.facebook.com/thesparkledlife1

 

And yes, I will take any opportunity to apply glitter.  

Love and hope today is fabulous,

 

Team Sparkle Bike MS: City to Shore 2013

Yes its that time of year again...Team Sparkle Bike MS: City to Shore 2.0!!

While the participants of Team Sparkle start prepping their butts for the long bike ride, we are again looking to grow our team to VIP status with the help of YOU, the lovely donor sparkle supporters. 

Last year Team Sparkle raised over $12,000 through a lot of wonderful donors.  This provided Team Sparkle with the encouragement and hope needed to bike the 185 miles from Philadephia to Ocean City, NJ and back.  

The whole overall experience was, in a way, breathtaking.  For me personally, each $1 donated meant someone believed in my fight, in my hope.  It also was amazing to witness not only my loved ones but 1000s of strangers sacrificing a weekend to bike for my cause.  

For pictures from last year's ride, visit: https://www.facebook.com/media/set/?set=a.645920224980.2074072.144900133&type=1&l=68be5f339c

The money donated did more than give me hope; it went straight towards improving my quality of life.  A portion of the money raised through Bike MS rides throughout the country goes towards research and development, specifically to find medicines that help manage MS. 

Over the past year I have tried 2 MS management drugs, not responding to either category.  This was extremely discouraging for the next option was the Chemotherapy levels (obviously something to be avoided for as long as possible).  

But, with the help of the money from the MS Society - Bike MS, a new drug was approved called Tecfidera on March 21st (my 1 year MS anniversary...convenient).  This drug is oral (meaning no needle injections three times a week or monthly infusions!!) as well as very promising.  Im in my first month currently and hopefully in the next few months will know the affect it is having on managing my MS.

For those that donated last year, thank you!!  It may have only been $30 but that generous amount helped provide me with medical stability and hope, as well as kept me out of the chemo world.  

This year's ride is starting out even more special as Bike MS: City to Shore has asked me to be involved on a few different levels with regards to promotions.  

I was humbled to be a part of their postcard campaign (see below) as well as they asked me to provide a few words at their opening meeting, all around the theme of "Why we ride".  I've had the opportunity to get to know some of the members of their team and am honored to be volunteering along side them.  They are just fabulous!!

This year Team Sparkle's Goal is $5000 and our team members are Brian (my daddy), Connor (brother), Kevin and John (twin brothers), Tonya (my mom aka Captain Team Sparkle) and myself (yay!!!).  

There are three ways in which you can be a part of Team Sparkle:

1. Donate to Team Sparkle (visit here for more information: http://main.nationalmssociety.org/site/TR/Bike/PAEBikeEvents?team_id=349549&pg=team&fr_id=20331)

2. Promote Team Sparkle (create awareness by sharing Team Sparkle's information and donate page)

3. Join Team Sparkle in riding the race yourself!!  There are a few different routes to choose from and we would love to have additions to our team!! (visit the donate page for more information: http://main.nationalmssociety.org/site/TR/Bike/PAEBikeEvents?team_id=349549&pg=team&fr_id=20331)

Anyway you choose to be a part of Team Sparkle is greatly appreciated!!  I look forward to seeing the rewards from this campaign and sharing the updates with you!

Love and thankful,

 

I Believe in Miracles

I like things in life that can be accounted for, explained.  I like when there is a pattern to how things work and why things dont.

Which is why you can imagine having MS in the first place drives me bonkers just on the basis of not having any answers as to how, why, when, etc.

And that is what the past 4 months have consisted of.  Dead ends and no answers.

I know I expressed that I was "sick" but looking back in hinesight as well as hearing from what others have told me, I might not have realized or have shared how sick I actually was.  

There were days that I thought I was dying.  There were days that I looked like death, eyes glazed over, gray skin (lets not even talk about my gray hairs).  My sparkle had been lost, my energy gone, my zeal for overcoming obstacles with stubbornness went right out the window.  I wasnt giving up; my body was literally shutting down.

At first it was thought that this all could be tied to my anti-body response to the Tysabri infusions.  But after a dose of steroid injections and a round of plasma exchanges, while relief was found for a few days, I just kept tumbling downward.  

There was a really bad night the end of May.  I had gone to a Dave Matthews Band concert with my friend and had a great time; I was feeling good, smiley, happy.  Then I came home and like hitting a brick wall, I lost it.  It was probably the worst night of my life.  I was afraid to sleep yet could do nothing except lay there, fighting my body to keep my eyes open.  Mom and Dad took turns checking on me every hour and I think this was the night I dramatically proclaimed I was dying.  

Yes, I am known to be Miss Drama Queen at times but in all seriousness, I really did feel it.

Cleveland Clinic came and went with no further answers or assistance.  Each day was a struggle to find something, anything, that could offer relief.  

In between the week at Cleveland and before going to rehab I remember lying on my floor, begging God and everyone in Heaven for help.  It wasnt my first cry (I pray daily for help; I wouldnt be able to live The Sparkled Life without some Divine help) but it was desperate.  

I was calling on everyone, every single person I could think of by name in Heaven: family members, friends, celebrities (Heath Ledger included), historians, past Presidents and artists, Saints, all of them.  Asking them that unless they were preparing a welcome party for me that they send some heavenly help.  Please 

And this is where I get to insert a thank you to all those that prayed with me on this earth, because I know I wasnt the only one desperately praying.   

Thank you so much, for your support and hope in your prayers.

At the end of the day, God decided to answer in the way asked and sent a little miracle.  Ok, a BIG miracle. #lesbihonest (sorry had to...it just fit.  #ifyou'veseenPitchPerfectyouundeerstand)

So I was in rehab and was hit with one of my disabling migraines.  They come on so quick and so fast and are so annoying and so inconsiderate.  I was lying in my hospital bed, ice on my head, my body trembling with what we thought was spasticity.  

The doctors had put me on the most powerful drug for spasticity, with no change.  Thinking outside the box, the attending doctor thought that perhaps this wasnt MS, that maybe this was something on top of the MS; and proceeded to call a brain doctor to evaluate.  

Brain doctor came, examined, ordered a MRI (just the cure for a headache!) and then provided his thoughts: that this indeed was not spasticity but rather tremors, tremors resembling those of Parkinson's.  

What?

Excuse me, Im only 26.  Can you run that by me again? 

MRI was run and showed no MS progress (a good sign for the MS in me) which furthered the theory that this wasnt MS related.  Let's give Parkinson a try.

I was prescribed a Parkinson medicine and guess what?  Within two weeks my tremors are controlled; I'm functioning again.  Im walking again.  Im talking again.  Im eating again.  Im myself again.

Im sparkling again.

Sputnik was so excited to have his mom back for fun!

This is the miracle.  

Yes, you could argue that it was just a series of fortunate events, of the doctor thinking outside the box, the bringing in of the a brain doctor, deciding to pursue a drug usually reserved for those older than 60...that worked.  

But with my luck and with my history, I cannot deny the fact that there was some divine intervention at some point within those fortunate events.  It all was a stream of miracles.

So does this mean I have Parkinson's Disease? No.  I have Parkinsonism, which contains the symptoms of Parkinson's.  It can be caused by a number of things but the two that are considered for me are: 1, a build up of toxins in my system or 2, a lesion in the brain close to where Parkinson's develops.  

Just in case it's number 1, I'm taking specific steps to detox my body of all these ridiculous medicines I have been on.  Even if this doesn't take away the tremors, it will at least be good to know all these toxins are gone!

How do I feel about having Parkinsonism and Multiple Sclerosis?  Not entirely happy about it.  However, I am EXTREMELY happy to not be where I was before.  It was always in the back of our minds, the past few months, that maybe this wasnt MS.  That maybe it was something else aggravating it, causing additional symptoms.  And that theory was right.  So in the end, if I only have to take a pill to help maintain my current status, then I can definitely live with it. 

At the end of the day, I have to believe in miracles.  Yes, I like answers to every question and I like to know how and why things work or dont.  But sometimes you dont get the luxury of answers.  Sometimes you have to take it on faith.  Believe that, well, "everything's gonna be alright".  

And, trust in the miracles.

Love and THANK YOU to my miracle Provider and those who helped along the way,

PS: It wouldnt be a week back on my feet without a visit to our favorite burger shop, Burgatory, with my bestie who came back for the week.

Home / Rehab 2013

So Rehab 2013 was short lived (that is, if you can call 10 days in the hospital short lived).

The view from the hospital.  This was one of my reading spots.

Im very glad to be home and recovery is on the rise (hospital recovery that is; "they" say for every day in the hospital it takes 2 to recover.  My recovery period is usually half or less than that so here's hoping).

The original time frame for my stay was 2-3 weeks, possibly more.  However, as the days went by, things werent matching up.

My spasticity was actually not that; rather, diagnosis was uncontrolled tremors due to some neurological malfunction.  What this meant was that physical therapy, occupational therapy, speech therapy, etc, could do all they could but until the doctors found a medicine to stop my tremors, their / my hard work would go unnoticed.  

 My half of the hospital room.  Tiny, tiny, tiny.

So in the end what started out as a hopeful journey of therapy to learn how to re-do life, as done last summer, was shattered as it became more and more relevant that I was there for medicine monitoring.  

It was my decision to then ask the team of doctors and therapists "How about we do this outpatient and I go home?" and all agreed.  There was nothing besides repetition that could be done and an autoimmune patient isnt best to be found in the hospital.  

So, here we are, another wall.

Im not ready to share the details of the thoughts of the diagnosis because, well, 1, it's not confirmed, and comes with many questions, and 2, sounds ridiculous and I am hoping for a different answer.  Hopefully I will have a better idea in a week.

In the meantime, I am home and thankful.  I have some sparkle searching I need to do as I seem to have lost some in the past few months.  Hope finding as well. 

Im tired.

 The best feeling.

We'll get there eventually.

Much love,  

PS: If you're in the mood for some beautiful music, check out this wonderful rendition of Just Breathe by Willie Nelson and son Lucas (and yes, he sounds just like his dad).  This was my favorite part of Farm Aid last year, so beautiful.

http://www.youtube.com/watch?v=mjbLDt1tvz4

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!

By the Numbers...

Im a number girl.  

It comes with the territory of being in business development.  Or just being nerdy.

The goal of my job was to make it to yearly, quartley, weekly numbers.  Each morning started with "looking at the numbers". 

In personal life I was always running numbers of personal budgets, etc.  Making efficient and cost effective decisions always comes down to numbers, not always what was the cheapest.

And then there is the fact that I just love the way numbers add up.  How some dont.  The odds and the evens.  (PS: This doesnt mean that I love math.  At this point I am only stating I love numbers). 

It's no secret that my fight with MS has been a little hellish lately.  I spent most of last week going back and forth with my doctor's office deciding what to do next.  Hospital or no hospital.  MRI or no MRI.  Even tried to admit me directly to rehab for treatment but my floor was full.  Oh and then there are insurance delays, gotta love those. 

So, nerdy me, decided to run some numbers to calm down a little and make me happy. 

• 323 = # of likes on The Sparkled Life Facebook (found here)
• 503 = # followers on The Sparked Life Instagram (found here)
• 5656 = # of pageviews on The Sparkled Life blog

The Sparkled Life, as what it is today, the journey of my life with Multiple Sclerosis, isnt even a year old (we're close though).  

And look at those numbers.  If I were receiving compensation based upon those, I'd be having a happy shopping trip right now.

Instead, these numbers have brought a smile to my face.  Because each number illustrates a MS Sparkler supporter, someone who believes in me, someone who believes in the fight for MS, someone who believes that we will find a cure.  

So thank you numbers.  You mean more to me than you will know. 

Enjoy your life this weekend!

Love,

Weekend / Life updates.......

Well let's see.  It is now almost the end of April.  And I have successfully spent most of it in bed.

April showers bring May flowers?

Let's gosh darn hope so!!

This weekend was full of adventures. 

First, the Darlington family as we shall call them.  This is a family that I sometimes house/dog/kid sit for.  They are just a lovely family.  This weekend I dog sat their two puppies, T and S and we took many naps together (yes in the same bed).  They are fabulous puppies.

We even spent some time sitting outside for a bit, them watching the deer, myself reading and drinking Starbucks.  The weather was nice enough to wear sandals for a bit!  That was a sparkle moment!

Second, Grandma visited from Colorado!  We met Saturday for coffee at my favorite.

Third, the twins received a scout honor at the Catherdral on Sunday.  Being in a wheelchair sometimes does have its benefits...we got front row seats!  So proud!

  

I love how you can see my bunny ear iPhone case shadow on here. (:

  

With Grandma.  Dress: Michael Kors. Love.

Boys and I. <3

  

Mom and Daddy with the Scouts of Honor.

And then...back to bed.  Last night was one of the worst nights.  Well, like I said, this past month has just been blah.  I havent gotten to do anything because my body just doesnt even want to.  

Multiple Sclerosis is a bitch.  I can say this because it applies.  

I go tomorrow to the MS Specialist Doctor to determine next steps and how we can find some relief.  I only hope there is something.

I watched a very interesting movie which I will elaborate on more on a different post; it was called "A Little Bit of Heaven".  It brought me to tears, which really isnt saying much since this medicine I'm on creates life to be portrayed as an emotional rolling coaster.

But to provide a glimpse, what really brought me so hard to tears is the correlation this movie had with my life.  Granted, it wasnt a direct correlation but it was close.  

Watching my life correlation, on screen, played by Kate Hudson, whom I love, was difficult.  It knocked me into the reality seat, a seat I dont like to be in much (hello, I sometimes convince kids that I'm a real life princess; or that I'm a robot and have a third leg).  

As stated, I will elaborate more.  I just wanted to share a preview of what is to come. 

To say that reality sucks sometimes.  

Multiple Sclerosis sucks all the time.

Not being able to get out of bed shouldnt even be a thought.  Unless you're trying to avoid finals week.

I'm doing the best I can do and I know that.  And I have amazing friends and family who are as well.

No one knows how to do this, how to go through life with a chronic, disabling disease.  But once that card has been handed to you, you just got to put on your best poker face and play it.  There are too many cute clothes to wear out not to.  (Should I mention I've done a lot of online shopping? :D)

Much love to all.  Prayers, good vibes, all appreciated for some hope tomorrow!!

Love, Eliz

A wheelie selfie shot.  A must of course. 

PS: THANK YOU to all who have liked The Sparkled Life Facebook Page!!  We've hit 141 likes!!  Here's to 200!!  To like the fb page, visit: https://www.facebook.com/thesparkledlife1

Man down!

Sunday was an eventful day, to say the least. 

To begin, I actually had an outing....I made it to church.  Wheelchair, myself, MK shoes and all...we did it.  It was a beautiful day.

 

A few hours later, we had a man down incendent.  My mom had a little fall and twisted both her legs/ankles/feet.  Poor lady...at least she had good shoes on!  Though we procrastinated our Saturday pedicure and are now really regretting it.

When a man goes down, especially when this "man" is the mom, it can be very difficult for the household.  We (the kids and dad) are learning quickly all that she does for us.  Mom is learning quickly how hard it can be to just chill.  

Mom needed a break.  I just wish is was more at a tropical location instead of in our "sick chair" in our living room with her legs up.  At least we have a nice tv.

But she is healing.  And we have a GREAT community who has stepped up and arranged for dinners for us for the next week or so.  (I wont lie...when this first happened, my brain starting running a list of all the dinners I could pull from a crock-pot, frozen trader joes and how many times we could order pizza without seeming ridiculous.  So when my mom said "Elizabeth, you dont have to worry about cooking....everyone has it taken care of", I sighed the biggest (silent hah) sigh of relief.  THANK YOU...really!)  

We all hope Mommy starts feeling better soon!

I had my infusion on Monday.  My friend drove me in and the infusion center was extremely quiet, which made for a relaxing few hours.  

 The intersection I know too well.  UPMC central. 

 Infusion center time...with my drugs, sperry shoes and sparklies.  (Blog update later on where the rings are from...received a lot of compliments with regards to those)

I started this blog with the hope of ending it with the message I received this morning:

That this incident was a pseudoexacerbation due to stress.  With a combination of drugs, stress relief techniques, stretching and PT/OT practices, I will be back on my feet in no time.

However, I just received a phone call from the doctors.  Let's just say....I cant catch a break.  

I am extremely tired and wont go in to much detail now.  For those close and personal, know its not too serious.  Just another extreme stepping stone.  

Prayers and love, Eliz