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.

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

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!!)

https://www.facebook.com/thesparkledlife1

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

OpenSky: https://www.opensky.com/atom-willis/product/black-washed?osky_referral

Web-site: http://www.atomwillis.com/

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

Love, Eliz

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

A turning of the page....

Life is full of chapters, new and old, good and bad, short and long.  Living is turning the pages in them, writing the destiny of the following chapters.

13 months ago to the day my life book was forced to change not only chapters but subjects, dreams, desires, routes.  13 months ago I was diagnosed with Multiple Sclerosis.

When people see me with my cane or in my wheel-chair, they ask "What happened?", with sympathetic faces and/or concern, expecting a "simple" answer of a car accident, a fall, a mistake on the stairs.  

As I reply "I was diagnosed with MS", their faces go from concerned to confused.  Because usually you dont see many people diagnosed with MS in the state that I am.  They suffer yes but many get to continue on their same path.  I do not.

There have been two occurances in the past few days that have caused me to question "what the heck am I doing in life?"

 (My "uhhhh" face.  Yes I take pictures to document my emotions.  It's all part of the sparkled life.)

1. My first MS symtpom, the one that led me to the hospital 13 months ago was the loss of feeling/sensation in my feet/legs.  To this day I do not have sensation in my feet.  They are continiously swollen and ugly looking.  

Due to this, I had to give up my guilty but lovely pleasure of wearing wonderful heels.  And, since I had quite a closet of heels, I ended up selling all my beautiful shoes.  We've come to the end of that chapter...I've sold my last pair of heels.

 (My last pair of heels and my not so beautiful feet)

Its ironic because the last pair of heels Ive sold were actually the last pair I purchased before being diagnosed.  I never even got the opportunity to wear them.  They were very extravagent, felt with fur edges.  How could you not love them?

Now they are gone.  Some other woman, size 10, will break them in for me.  And I hope she wears them with pride.  I hope they bring her good luck and many good travels.

Turning page #1...goodbye beautiful high shoes.

2. After much guidance, thought and prayer, the decision has been made for me to go onto Government Disability.  

Of course I procrastinated as long as I could on first, sharing this information (my pride) and two, applying because I didnt want to accept it. 

But over the weekend I completed my application.  My application to the Government that I, the girl who had dreams higher than the heavens, need's their help.  

It would only make the story oh so more interesting if I came across both my Bachelor of Arts and Masters in Business Administration Degrees the same weekend.  

 (I'm not sure how I lost my middle name in the between period of the degrees....)

My Bachelor of Arts years werent as dedicated however I did complete my program in three years while simultaneously working my political career (as mentioned earlier here).  

My Masters however I was more dedicated.  I finished the program also earlier than a full time student would (I like being quick and efficient in school items :D).  I worked full time as an Admissions Counselor during the day then spent my nights in the building next door learning the powers of Business.  I fell in love.  

I had the pleasure of being voted "Top Leader in the class" and "Best to work for", two items I take highly considering those who voted.  

The funny thing about all this is I never walked across a stage for either of these degrees, both due to graduating early.  And now, I cant even walk across a stage without assistance.  

I will frame these degrees, to remind myself that though I may be on disability and I may be limited by Multiple Sclerosis, I've accomplished so much.  To remind myself that at my core, I'm that same girl, disability or not.  

Turning page #2...defined by disability status.

These are two significant turning pages, two significant chapter turns.  It's hard to let go of things in life, it's even harder to deal with the things you've lost when you had no control over losing it.  

And as I approach new chapters of my life and my Multiple Sclerosis sparkle story, especially the upcoming ones, I hope the strength I felt while wearing my oh so extravagant heels and while establishing a strong educational business profile continues.  

I pray I can find strength in what I have lost in the hope of investing it in the things I can still achieve in my future. 

I've said it before but I'll preach it again...take nothing for granted.  From your shoes to your education, everything in life is a gift.  And should be treated as such.  Yes, there will be days in which "everything" doesnt feel like a gift but rather a very heavy burden.  But then, the ability to even carry that burden is a gift.  

Always a silver lining.  Never stop looking for it.

Love, Eliz

(PS: Today I wore a blazer.  This might not seem like a big deal but I had sworn of blazers one by one after being diagnosed, reminding me too much of my past Business Professional Career.  But today I wore one.  Proudly.)

("Mom, why do you have to show everyone my bad hair day?" Sputnik. Love him)

PS: Mom is healing and doing better each day!  Thankful for everyone's positivism towards her healing.