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,

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,

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

Medicine fail

Hello dear sparklers!

I left the blog post the other day in a ... statement as I had just found out some news from the doctor that wasnt so lovely.

The doctor had called to let me know my blood result came in positive for a JC virus antibody.  What this means (in so not medical terms) is that the medicine I was being infused with, Tysabri, is now being attacked by my body.  My body is creating little cell-men that arent alowing Tysabri to do it's thing.  It is rising against it.

There is a silver lining: at least we know something.  

The hardship is again there is a medicine that doesnt work.  Again I have to go through the process of determining what to do next.  Again I have to start over. 

The great thing about Tysabri is that it really helps with lesions in the brain, where my most active and serious ones are.  That is another frustrating point for I dont believe there is another medicine that not only helps slow down the progression but also helps heal lesions.  Which is why we were so hopeful and took the risk with Tysabri.

All to find out that my body is rejecting it.

It's funny in a way.  I had all the tests that could be done the past week.  And everything came back normal range.  I'm a healthy 26 year old woman.  

Im so healthy in fact that I have an EXTREME immune system.  

So extreme that it attacks my own body (hence creating MS). 

So extreme that it attacks foreign objects (medicine to help with MS).  

It's funny and then it's not.  It doesn't make sense.  

All this is another awkening as to why we need more research, more medicine and a cure.  

No person should be perfectly "healthy" by all standards but spend days in bed, napping and not moving.  

MS needs to be more of a cause.  It needs to be more of a movement.  And that is why I am so open about my experience, just for these reasons.  Also to let other MS sparklers know that "you're not alone!".

Where we go from here...for the next week or so I am to journey my day to day symptoms and such.  Then end of April we will meet and discuss and turn to new plan.

It's been a year.  I'm running out of options.  Which is why the help to promote the orange of MS awareness is SO important.  

Keep fighting on Sparklers!!

PS: On a side note, Mom is doing well and healing. She is finding the use of my old walker quite useful and is getting up and around a few times a day.  Progress!

Love, Eliz