My MOH Wedding Toast to my Sister

My MOH and wedding toast to my beautiful sister and the love of her life.

When my parents got married 30 years ago, my mom had a certain dream for her future and her future children.  4 girls, Little Women type tea parties, dress ups in the attic.

So when she started off with me, a girl, she thought she was right on track.  Then came Courtney, which furthered her enthusiasm.  And then there was....Timmy, Connor, Kevin and John.

Even though she didnt get the 4 girls she had hoped for, she tried her best with the two girls she did have.  We had all things girly...even matching school girl outfits for our American Girl doll collections.

But unforunately, Courtney and I werent too into it.  We let our dolls get dusty.  For who needs dolls when you have baby brothers every few years you can dress up?

Courtney and I also didnt spend much time concerning ourselves with future wedding dreams.  We knew we wanted to marry handsome, wholesome men but that was as far as we went.  Instead of playing dress up bride, we dressed up as old grannies, rocking out to Blues Travelers, pretending we were Elvis Presley's grandmas.

As the older sister, there were certain things I felt obligated to teach Courtney.  Things such as when you want permission to do something, you go to Dad first and ask when he's working on the car.

There were some things I left out, such as when she pulled all her hair tightly back and wore baggy t-shirts, she kinda looked like a boy.

But then there's some things she didnt share either.  Like only telling Timmy Santa Claus doesnt exist and allowing me to believe till I was in the 5th grade.

Even thought Courtney was the younger sister, she made sure to teach me a few positive things.  She made sure I always washed my hands and that it was more polite to say "pardon me" than "huh?".

Most recently she's showed me the power of love in hard time, as she held my hand as the doctor told me my Multiple Sclerosis diagnosos.  She is one of my biggest and most loving supporters in my sparkling fight.  I am able to shine because of her love.

But more importantly, Courtney has showed me how to be in love through her relationship with Allen.  Sure, he started out as the Jesus long-haired look alike kid who was "just a friend". 



 But we all knew, deep down, he was something more.

I've watched over the the past 5 years as your relationship has grown, blossomed.  There's no magic, it's not a fairy tale.  But your love is better than any Disney movie or dare I say even the Notebook.

For this, this is real.








 Today is a special day for it's a celebration of love with our closest friends and family.  But Allen and Courtney show what's even more special than their wedding day - their marriage.  They'll laugh, they'll cry, they'll fight, they'll throw pies at each other (oh wait....that was my parents).  They'll have kids, hike mountains, grow old.

And they'll do it all together, choosing to love each other no matter what.  And that is the most beautiful thing that could ever be shared.

Allen, today you didnt just marry Courtney Martin.  You married my little sister.  I should say that I am now entrusting you to love her, protect her, speak loud enough for her to hear, calm her down when she's stressed, make sure to climb the rocks first so she knows what is the best path.  But I know you already will.

Which is why I agreed to let you marry her.

Let's raise our glasses in toast, to the best real life romantic love story of 2013, the marriage of Courtney and Allen.

Love you Courtney more than anything; thanks for being my favorite sister.  And love always to my new favorite Brother-in-Law.

BSers

I was introduced to Blake Shelton my freshman year of college by my roommate Mary (today also happens to be her and her twin sister's birthday...happy birthday Mary and Ann!!).

We listed to Blake's song "Austin" on repeat for many hours.  It was one of our top 5 song staples.

Mom started to fall in love with Blake after watching a few seasons of The Voice.  She had made a comment that if he ever came to Pittsburgh, he would be a fun person to see in concert.  

I took that as a strong lead and got her tickets for Mother's Day....Im not sure how serious she was but she sure as heck enjoyed the concert!!

Got my boots ready.

Even though Mom grew up "on the range" and in small town USA, we didnt really have country clothes.  We still looked cute though.

We ordered to go Chipotle however they forgot to give us utensils / we didnt check.  So we managed with chips and lettuce like wrap bites.  And for drink we were classy and brought little bottles of champagne we were testing for my sister's wedding.

We had great seats!  A benefit of being disabled.

And I convinced Mom to do a silly picture.

I love this venue.

I had seen Blake when he had opened for Brad Paisley a few years ago and again, he did not disappoint.  

There's a trait in him that I find very remarkable...his ability to overcome hardship.  As you may know, Blake had a brother who passed away when he was young in a car accident (Blake's wife Miranda recently recorded a song "Over You" which they wrote in his brother's memory.  And yes, I may talk about them as if they are close friends).  

Whether a celebrity or not, losing a sibling has got to be one of the worst things to endure.  I could see taking the easy way and going through life with a chip on your shoulder of sadness due to what was lost. 

But instead Blake has embraced life and his gifts.  He lives loud and large and with a smile on his face.  That hurt is still there but he embraces it and moves on.

It's encouraging to watch a man write a song with the lyrics "Chew tobacco, spit" to sharing his heart and emotions in front of 27,000 people while performing acoustically the song "Over You" for his brother. 

How easier we can find joy in life when we share our hurts and our sufferings.  It reminds us we are never alone!!

And if you get the chance, go see Blake!  Embrace your BS side.

Love,

Like TSL's Facebook Page!

Stay up to date with all things sparkle by liking The Sparkled Life's facebook page:

https://www.facebook.com/thesparkledlife1

 

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

Love and hope today is fabulous,

 

8 Things to Make Life Easier

Ive always appreciated a life that is full of efficiency and effectiveness.  It is in my life mission statement (I'm such a nerd).  So why MS makes life more challenging with the amount of energy it takes to do things, it also challenges me to find new ways to make life easier.  Which I secretly love. 

Finding things that make life easier also leaves time to be doing more of the things you love.  We only have a certain amount of time; being efficient and effective doesnt mean to run through life faster.  It means to be able to have more time to enjoy the life your living and the people in it.  

Here are 8 things that I have found that make my life easier (and in some ways, even more cost efficient!!)

1. Lists

Yes, the ever loving making of lists.  We love lists: grocery lists, guest lists, who's our favorite celebratory lists.  Lists, though simple, hold so much power.

By writing something down, you are more likely to remember it.  It also helps to organize thoughts.  Head running in a 1000 different directions?  Write it down.  The focus ability will return.

Every evening I make a to-do list for the next day.  Some lists remain on the to-do list for a few weeks and that is ok.  When I wake up, my day is already "organized" and I am less likely to forget something or be stressing about something I waited to do last minute.  

This is also a relaxing method.  I write my to-do life list down in the early evenings so then I can relax for the rest of the day/night.  I dont stress about any items; if something pops up, I put it on the list and put it out of my head till tomorrow.  I leave the stress and anxiety of the day ahead on the paper.  

2. Eos Lip Balm

I know what you're thinking...how can a lip balm make my life easier?  Let me show you the ways...

First, they are adorable, unique and fun!  Using them is very posh.  

Second, they are extremely easy to find.  Chapsticks or lip glosses can so easily get lost in the bottom of a purse, fall out in the car, just disappear in its entirely for no reason.  However these balms are large enough in size (and what else do you put in your purse that is egg shaped?) that they can easily be sought out.  

Third, the balm gives an excellent glossy look without the "hair stuck on lips due to wind" dilemma.  

Fourth, they do an excellent job of moisturizing, meaning you have to use it less.  

3. Vaseline Spray and Go

Lotion has so many benefits in itself: it helps tans last longer, skin looking healthier, have to shave less.  So when Vaseline made a spray and go lotion, I was very excited to try it.  And it does not disappoint!  

 It goes on very easily, rubs in wonderfully and dries quickly so you can be on your way!  I have noticed that I do go through a bottle faster than I would a normal lotion bottle but for me the time saved is worth it.

4. Nail Time

I may go without make-up, I may go without doing my hair but I am never seen without my nails done.  Since before I could write, my Grandma Martin taught me to paint my nails.  And it has stuck these 20 plus years. 

Painting one's nails is very time consuming however.  I have gone all the routes in the salon: gel, acrillics, fancy manicure.  But they add up in $$ after a while.  

After much trail and error, I have found the perfect ingredient list for long lasting nail polish with no chips.  I can paint my nails personally and have the color last for a week or more (a true accomplishment!).

Here are my secrets:

-Nail bonder- the most needed first step.  This is what salons use (hence why salon manicures often last longer).  This is different from a base coat.  A base coat preps the nail by making a flat surface.  A bonder does exactly what it says: it helps to bind the color polish to the nail.  You can find a nail bonder either online or at a make-up store (Sallys, Ulta, etc).  It also dries very quick.

 (This is the best quality nail bonder I have ever used.  Highly suggest.)

-One to two coats of a nail polish.  It can be challenging for me to hold the nail brush at times.  I've found that the smaller, mini-sample bottles are perfect.  Plus, unless you use the same color weekly, a full bottle of nail polish will most likely expire before you use the whole bottle.  The little bottles are  cheaper and much more easier to use. 

-It is important to let the color nail polish completely dry before putting a top coat on; if not, this will lead to smudges.  I've used a personal UV light, fans, quick dry...but the most effective way I've found to help nails dry is after a few minutes to run them under cold water (or put them in a bowl of cold water).  This speeds up the drying process splendidly!

-Top Coat - instead of using an actual top coat, I use a nail strengthener.  It dries faster while still providing the shine and is good for the nail!  

-Every two-three days I do an extra coat of the nail strengthener.  This provides shine the whole manicure length.  Ive had many people ask if the color is gel/shellac; nope, its my nail strengthener.

5. Eyebrow razer

Whoever thought of these was genius!  Eyebrows are the death of me.  No matter how I get them done (wax, plucking, threading, etc), they start growing back immediately.  

These razors are so perfect for a quick re-boost of eyebrow power, allowing you to go longer in between eyebrow shaping days.  They also work great on peach fuzz. 

6. Neosporin

This is my secret weapon.  I have been fortunate enough to not have acne however no matter what my age, a pimple will pop up at the most inconvient time.  

I've tried almost every acne "on the spot" medicine and yet neosporin has the cure.  It makes sense, being that it helps with foreign objects in the skin (essentially what a pimple is).

 

I dab a little on top of the freshly clean skin and within a few hours, it's looking better.  I also use it as a preventive tool if I feel a pimple coming on or if there is an event approaching. 

This works great because I'm not a fan of the daily task of levels of make-up (primer, concealer, foundations, etc).  Im much more a powder, mascara and go type of girl.  This helps the process.

7. Hair Oil

When I first got sick, I used the time as an opportunity to re-vamp my hair's health; I used less heat, less products and more care.  And I'm very happy with where it has gotten me!

Happy, healthy hair means a lot of things: easier to manage, less time doing your hair, opportunity to let it air dry and go on with life.  Happy hair means happy life!

One of the most valuable things I have found on the road to happy hair is hair oil.  I've tried many different brands but this one is my favorite.  

It can go on wet or dry hair, great for the in-between shampoo days.  It also doesnt leave hair oily or heavy.  It is very light, refreshing and it smells wonderful!  

8. Organization

It can be challenging to go from chaos to organization.  However, I can guarantee that once you are there, it makes life so much easier.

Organization doesnt always mean spotless or spacious.  Organization means that things have a home and you can find that home when needed easily.  

 (it looks hectic but I know exactly where everything is. #prostatus)

Some tricks I've discovered to help with organization:

-Containers.  From shoe boxes to baskets, containers are a great way to organize items according to their "family" while also having them accessible and in many ways "cute".  I have all my medicine for example in one basket.  When I have to go someplace, I just pack the whole basket.  Easy!

-Closets.  It is so easy to just stuff things in the closet and forget about it.  Until you need that item.  Instead, organize your clothes by item (pants, shirts, dresses) - this helps in planning outfits too.  Do the same with shoes.  It may seem like more work to have to put things in their right order but eventually with time it will become second nature.

-Trash it.  Everything to me has value - money value, sentimental value, "Im going to need this someday" value.  My rule of thumb is if I havent used it in 1 year, then I probably wont be needing it in the next year.  This goes for everything: jewelry, make-up, products (granted, some expire shorter than a year), clothes, shoes, purses.  Some items can be donated or sold used; but others just need to be trashed.  

-Stick with it.  Once you have things organized, do your best to make sure it stays that way.  Granted, there will be days that nothing will be organized.  But it helps when you put yourself in the habit of hanging up your purse, putting the mail the mail bin, putting the book away, etc.  Practice makes perfect.

Organization truly is the mother of all tricks to making life easier.  It makes life more efficient, your time more effective and it has its cost advantages (its easier to not have to re-buy things when you can find them instantly).    

So there you have it...8 life tricks according to this MS sparkler.  Do you have an life tricks?  If so, share!  I'm all about the life is easy road!

Have a fabulous day!

Love, 

PS: My sister is getting married in just a few weeks!! Cant wait to share all the wonderful and beautiful things for the fabulous day, especially those created by my mom.

My job is to make sure the puppies are ready.  Sputnik is very excited about his new tux.  Can you blame him?  He looks so GQ.

 

Shoot - Im a Spoonie

Thank goodness for Urban Dictionary.  Otherwise I would have no idea what the cool kids were saying these days.

I came across the below picture the other day, which obviously I related to.

Except I had no idea what a Spoonie was.  Someone who liked to spoon?  

Wrong.  A spoonie is in fact a person living with a chronic illness.  

Spoonies are people that live with chronic illness; theoretically measuring personal daily abilities much as one would measure the proper amount of spoons needed for an event or occasion... sometimes having an abundance, other times coming up short.

Yep.  That's my life.  I am a full blown, 100%, no other definition needed, Spoonie.

Shoot.

I've had MS for 16 months now.  I'm by most standards doing much better than I was a year ago, 6 months ago, even 6 weeks ago.  I can drive, talk, walk with just 1 arm crutch and even wear a wedged heel.  

So why is that I find having a chronic illness harder to accept as each day passes by?

I was so sick for such a long time that I was distracted on being sick and how to get better.  Now that I am getting better, the emotions surrounding this realization of my life have to be met.  And explained.  And dealt with.  

It's daunting to me that I will be sick for the rest of my life.  Chronic.  Forever.  

Today at the pool I was watching a grandmother hold her grandson.  It's brutal to realize the reality of the fact I cant hold a baby.  My hands are not secure enough, there is too much of a risk.  Even if I could, how do I hold a baby and walk with my arm crutch and carry the diaper bag and bottles and stroller?  

How do you accept that?  Can you even?  Or do you just keep on moving on because life is too beautiful to stop and dwell on the hardships?

It takes a person with MS 10 times more energy to do a task, sometimes more.  (Side note: stay tuned to my Top 10 Items That Make Life Easier post).  Which means that even while "better", I can still only complete a low percentage of items that the every day person can achieve.  And there is nothing that will help this; its just the way life has become. 

I suppose that is how you learn to deal: acceptance.  I have to accept the fact that my life will be forever challenged.  I have to accept that I wont be able to do things the "normal" way.  I have to accept that I cannot compare my life to others because its impossible for me to even compete at that level.  

Acceptance is hard.  Especially when you are stubborn.  Or you dont like the path that now you have to accept.  

On top of that, there is a fine line between acceptance and giving up.  When do you accept and when do you stop fighting?  And though they are similar, acceptance can be in it's very essence the opposite of giving up.  By accepting that I have a chronic disease and am limited, I can then move on and live life to the fullest.  I can show MS who is boss and kick some butt. 

So while other fabulous women get to accept their destinies of motherhood, career professionals, high-heeled wearing nights on the town, I will be here accepting my destiny of being a Spoonie.  

At least I'm cool enough to be defined on Urban Dictionary.

To all the Spoonies!!

Love,

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.

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,

Plasmapheresis - a fancy blood thing

Today I had my first second round of

Plasmapheresis

 also known as Plasma Exchange.  

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

According to the National MS Society:

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

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

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

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

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

Yet we hope.

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

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

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

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

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

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

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

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

 My veins hurt.....

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

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

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

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

Love, Eliz

What I'm Learning about Friendship. Part 1.

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

Now, it's friendship's turn.  

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

So cue Part 1 Friendship.

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

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

Friendship can essentially can be broken down into 4 groups:

1. The "Im right next door" friendship.

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

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

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

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

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

3. The "Life is the same" friendship.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Love always, Eliz