Showing posts with label pictures. Show all posts
Showing posts with label pictures. Show all posts

Tuesday, August 20, 2013

Wedding Bells!!

Well, the wedding of 2013 has come and gone and goodness was it just beautiful!!

My sister Courtney and her husband Allen.


As promised I will be sharing the details of the DIY wedding but I'm going to hold off a little on that as I'm still in recovery mode. 

The wedding was just beautiful!  My sister looked absolutely stunning and her husband said it was the best day of his life.

I teared up at a few moments...the vows, my speech, the first dance.  Its very moving.

Friday night was the rehersal and dinner and it was a little comical.  The Priest is newly ordained and didnt really know the process.  Being that it was our families' first wedding as well as my sister's husbands families' first wedding, we were all very happily confused. 

The dinner was a great time of socializing, allowing us to meet and great with all the bridal party and our families.

All of the siblings at the rehearsal dinner.


Saturday was a true adventure of a day!  All the girls got ready at our house...hair, make-up, steamed dresses...it was so much fun.  My best friend Zachary flew from Boston to attend the wedding as well as to help with hair.

Zach and I being normal.
 

Everything went smooth and flowed well...although it did go by too fast!

The wedding ceremony was very blessed.  A true witness of love.

And then party time!  My mom truly did a great job with decorating the reception hall.  The night was truly a party; the dance floor was never empty.  

The favorite family moment was when they played our anthem, Bruce Springsteen's Born to Run.  We all had a blast jamming to that one.

Proud Jersey blood.


Sunday morning our family hosted a brunch which was a great way to really sit down and chat with all the out of town people who made the trip as well as our close friends here.  Courtney and Allen then spent some quiet time with us opening presents and reminiscing on the events of the past week.  

Sunday evening they flew back to Colorado and then left early Monday for a camping honeymoon.  I had gotten so use to having everyone home (including my brother Timmy) that Monday was very quiet.  

As if I cant say it enough, it really was a beautiful time.  It's not every day your younger and only sister gets married and I'm so happy for her that her wedding day was epic.  And now on to a fabulous marriage!

 

I'll be sure to follow up with more photo's, stories and how-to's.  

Have a fabulous day!

Love,

Friday, May 31, 2013

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.

Sunday, May 19, 2013

Here I am

What is common with multiple sclerosis is that a person will experience a relapse due to a lesion on their nervous system.  

In the young ages of MS, these relapses usually heal up.  There are various ways of helping to recover from a relapse (steroids the usual, plasma for extreme/back-up).  

A MS sparkler then heals and goes into remission.  And though that is good progress, it can also be challenging, not knowing when the next relapse will strike.

Today I only did two things: attend church (in my wheelie...didnt even have to walk) and go to Starbucks to catch up with my lovely friend Natalie.  

 Such a good friend this girl is.

Two non-stressful, relaxing things.  

Yet I found myself at 5pm as if I hit a brick wall. And am still recovering.

MS can mess with you cognitively and emotionally, especially when you have brain lesions as strong as mine.  I must remember that.  It's ok to cry, even though I thought of it as a weakness before; now its more of a recognition of the life that is happening around me.  

Or so I tell myself.

I dont question why God designed for me to develop Multiple Sclerosis.  I see signs throughout my life that lead up to what is today.  And have experienced the most amazing things since being diagnosed, only confirming that I can do this.

But what I do question is why it has to be so severe.  Why is it that I'm two days short of having MS for 14 months yet have not gone into remission?  Why does my body reject everything?  Why am I "so healthy" that the drugs that can make me better make me worse?

Why cant I be a normal, boring MS sparkler?  Why cant I spend more hours promoting MS awareness instead of sitting in a chair having all my blood removed?  

Its very challenging to start this new MS life when I cant even get out of bed.  

During mass today the song "Here I am Lord" was played.  (I know I dont normally post about my faith but it is fitting as it is the rock that keeps me going despite all the let downs.  A rock I so need currently).

As I sat there, in the back of the Church, in my wheelchair, listening to the lyrics, I had to stop and hold back tears.  

Growing up, especially in my high school years, I would ask God to "lead me".  I felt it noble, encouraging.  My calling.  Yes, perhaps naive.  But apparently God still heard and answered.

Here I am....not exactly what I thought I was signing up for when I prayed those words.

But the fact that I asked God for guidance and for love gives me the hope to know that my case of Multiple Sclerosis is no accident.  I dont know why.  I may never know why.  But I trust.

I trust that my doctors will find me some relief.  I trust that I will know what steps to take next.  I trust that all the finances and bills and stress of having a chronic disease will work itself out.  I trust that life will go on and I will continue to sparkle.  I trust that Starbucks will eventually acknowledge and corporately become part of The Sparkled Life (ok...far fetch but a girl can dream). 

The Sparkled Life...day diagnosed, day released from rehab and today.  
I might have lost the tan, gained a few inches of hair, learned how to give real sarcastic faces in pictures...but I'm still me.  MS can alter my nervous system as such...but it cant take away who I am.

To MS sparklers, to MS supporters, to MS fighters...this journey is a promised one.  I have hope for you, for me, for us.

Here I am.

Love, 


 
Here I am Lord...
I have heard You calling in the night.
I will go Lord, if You lead me.

Tuesday, May 14, 2013

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,

Saturday, May 4, 2013

Livin' on a prayer

May the fourth be with you.   

Yes, I'm a closet have seen it too many times Star Wars fan.  

Happy Saturday! So I thought I would take a moment or two and express how I am feeling.

You know that feeling after the longest day you've ever had, that included work, hobbies, family, exercise, cooking, cleaning....plus you're sick, like cant function sick.  And you lay down and just cant get up?

That's a percentage of my last few days.

I am literally living on a prayer. 

I think I can conclude that the steroids are in fact not working.  I would even go so far as to say that I'm worse off.  Yay.



Third infusion day came and went.  I have a new favorite at home nurse as she brought me a Starbucks.  Pretty fabulous.  

Mom made my day sparkly buy finding the (almost sold out) lovely blue sparkly sperrys I've had my eye on for weeks.  

The puppies have enjoyed being able to snuggle with me while being sick.  

May 2nd I celebrated my 2nd year anniversary with 3 Pillar Global (more on that later).  



Right now I am going to go watch some tv, drink some bubble water and collapse again.  


Two last things:

1. Last weekend I put a goal to get 100 likes on facebook...which we achieved!!  Can we get 200 by the end of this weekend? (we're so close!!)

2. Check out and spread the news of Atom Willis, a men's fashion label that shares it's profits for MS awareness.  Love.

"Try not. Do… or do not. There is no try.”

Love, Eliz

Wednesday, May 1, 2013

Celebrity care or Reality check?

This morning a nice nurse came to our house to provide at home personal care in administrating a steroid infusion of solu-medrol.

At first thought, I was excited about this choice.  We wouldnt have to drive into the hospital for a day, I could be comfty in my own home...convenience.  Princess treatment I believe I called it.  Celebrity care as I was reminded.


But then, when it actually occured, I realized I didnt like it.  Home was my safe place.  It was where I would only let those closest to me in for it was where I would allow myself to actually be MS Eliz.  You know, the one without any make-up, who spends her days in bed, drinking Starbucks, in her lovely VS yoga pants and tanks.  

And today it was invaded by no less than steroids.  Reality check.  You know you are sick when....



But the nurse was pleasant.  And the infusion went smooth.  Like always, I have yet to find relief, only side effects.  

Today these side effects are leaning more towards how much I miss my friends.  I want everyone to come over now.  If steroids can come, so can the world.  

I miss my friends, near and far.  I miss my brother and my sister.  I miss my Grandma.  I miss driving my little sports car, given to me about 5 years ago (how time flies).  I miss going to the mall.  I miss.  I just miss it.  And there is nothing I can do because I've picked the worst time to miss these people.  Finals, new jobs, new families...life is moving on and spring is busy.  People who I know would drop over in an instance cant right now.  And I just have to deal with it (and the growing fact that these emotions are in a long play due to my drugs) and wait just a few more weeks.  Maybe then I will be human and alive again.

Regardless, I survived day two.  We left the IV in which is weird also, being that I'm sleeping in my own bed with a needle in my arm.  But given the fact my nerves are tricky, best solution.  

Final answer: I'm going with celebrity care.  Especially since I wore my new local celebrity LA shirt today.  "The best things in life are love".




Amen to that.

Love, Eliz

Tuesday, April 30, 2013

The Severity of my MS is Helping the Economy.

My mom homeschools the three youngest brothers who are at home (although they particpate in a lot of public school activities...they have the best of both worlds...said from the girl who went to public high school).

Each day one of the brothers picks a "word of the day" from a SAT Word Book and it is then written on a board on the wall.  Each time a person uses the new word in a sentence gets to put a nickle in the "Chick-fi-la" bucket, which will eventually be used for a dinner out on the town.  #wesofancy

Severity is one of the first words I saw when I got home from the hospital today.  Nickel for me!

Yes, the severity of my Multiple Sclerosis case is keeping the Multiple Sclerosis Department at UPMC, my Doctors, health insurance and many drug companies in business.  While I'd much rather be keeping businesses like Massage Envy, Clinique, Michael Kors, Ralph Lauren (to name a few) in business, I am helping the economy.  #silverlining

As most of you know if you've followed the past couple of posts from The Sparkled Life, the past few weeks have been not fun, at all.  I've been very sick.

What thought was a pseudo-relapse due to stress actually turned into a blood result that came back with anti-bodies showing that my body was rejecting Tysabri.  Tysabri was the infusion that we had so much hope in, especially since it helped with lesions in the brain, my curse.  But, my body decided no.

The problem with this story is the blood result came back just hours after I had my April infusion.  So I've suffered the past however long with a drug in my body I'm allergic to.  No wonder its been ugly.

Interruption:

Remember when I mentioned that one Thursday when I went to the hospital and it was a day that made it on to the Top 5 worst in my MS career?  Well, what made it qualify was an "administrative" problem that occurred between my health insurance and switching to COBRA.  

I was assured that there would be no lapse however, once arriving at the hospital, we quickly discovered this was not the case.  And it was due to an "administrative" problem.  Please excuse me while I have trust issues with insurance companies, brokers and the like.  

This rant comes full circle.  For this "administrative problem" caused a 24 hour delay in all blood-work and testing.  A precious 24 hours that cost me being infused with a drug that I'm allergic to but didnt know because of the hour lapse in the blood-work results.  

Thank you insurance company and brokers, kindly.  

So today.  I first must say, I really appreciate my MS specialist doctor.  He is very smart and he really cares about me.  Before, yes, I might have been just an "interesting" case but now, after all our meetings, I've become a patient he just wants to be "boring" as he puts it.  He wants me to get better.  

And today, as he started his notes, he said "Let's talk MS long-term..." and trailed off in thought.  Coming back, he said in an under the breath kind of a way, "usually we dont have this talk until much later".  Usually, Tysabri is the right answer.  Usually, its a good right answer.  But my body, strongly, said no.

So here's the summary:



My body didnt take to Rebif (thus the entire class of interferons); my body is allergic to Tysabri.  Not many options left.

However, a new and positive drug has JUST come out on the market and is an oral tablet and has promising results.  Further encouragement to share my story, to create MS awareness.  This tablet was only approved a few weeks ago.  And here I am, in need of a new medicine, a stepping stone before I turn to the high risks of such medicines as chemo.  

I dont like that I have MS.  But I can see that God is using the awareness, The Sparkled Life, for good.  Let this be the proof.

So, we will wait the weeks it takes to get a high cost drug approved my health insurances (blah) and then we will have hope that I will eventually go into remission.

In the meantime........


My "I hate steroids and life right now face".  And yes, I wear that sweater a lot.  Its the perfect go-to from Ralph Lauren.


I'm still suffering from pain, tremors, the usual.  Even though I swore of steriods forever, we are giving it "one more shot".  But a short one.  3 days of steroid infusions and then no taper.  After that, depending on how I'm doing, we will discuss Plasma Exchange.  

I have a feeling this route also has to do something to do with health insurances and drug companies.  I wont digress on that.  That and the fact there arent really any other options for relief.

So...beware world.  Steroids make me very.....emotional.  And you gain weight no matter what you try or not try.


My steroid photo-shoot...1, how I really feel face, 2, Mom forcing me to smile, 3, Laughing because we're having a photo shoot in an infusion center, 4, the ugly steroids.


They've already kicked in.  Coming home from the hospital Mom had the pleasure to hear my piece on Pittsburgh drivers.  When stopping at Trader Joe's (for my favorites and roses...gotta love Mom), I even let a person who was staring at me in the old person motor cart, arm bandage and overall "I'm sick" appearance know "its so cool to stare".  I'm pretty sure I saw a smile.  Or at least that's how I'm telling the story.


The many faces of steroids.  Am I being dramatic?  No, they really do make me cray.


The next two days of steriods will actually be done in house (#princesstreatment).  They'll set up an IV infusion center and I'll just chill with the traveling nurse for an hour or so.  And we checked ahead of time, insurance covers this.

Ending words:
  • There is always a silver lining.  You just have to look for it.
  • I havent had steroids since having the disability of dysarthria (my speech disability).  So this should be interesting...how the words come out.
  • Pray for my family...they will need it.
  • Help create MS Awareness and do not give up hope.  
  • 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.  

You all are wonderful.  Fellow MS Sparklers, MS Sparkler Supporters, random readers who stumble across....thank you.  Be thankful for your health.  Hope daily for continued sparkle. 

Love always, Eliz

PS: I woke up to bed head silly puppy this morning.  I love him.