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,

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.

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,

Things About Me Part 2

Today I am so over MS.  I'm so over needles and blood and drugs and things not working.  So over applying for disability and all the hurdles they make you run through.  I'm over it all, for today anyway.

Plasma exchange part two began with a very rough start, digging and digging in my vein until finally another nurse came and said "let's start anew".  I'm still bleeding, my arm hurts and I have a nasty battle wound growing.  Ugly.  

 I was gifted with roses  and beer today.  That was definitely a positive.

So, due to me being so over MS, I decided it'd be a great opportunity to focus on me. (;  Or rather, things about me.

I did part 1 about 9 months ago (can be found here: http://sparklebutonce.tumblr.com/post/28932747963/thingsaboutme).  

It was a great exercise then, reminding me that though I have rough days and might have a disease that is mean to me, I still have some fun and interesting qualities and history.  So here we go again (and again, I encourage you to do the same exercise.  It's fun!)

• I would love to own a Range Rover, even though it doesnt fit in the "Jeep or BMW only" category.
• Shopping is an activity that I best enjoy alone.  If I need an opinion, I'll text a picture. 
• I despise Mayo.  Even just looking at it makes me gag.
• I think brick streets are beautiful.  No matter how ghetto the houses/area are surrounding it.
• I have lived in the ghetto.  I lived a block away from a shoot out.  Upon hearing fireworks, I would always drop to the floor.  You never knew.  (I should probably clarify that this "ghetto" was during my college years).
• I can listen to a song on repeat for hours.
• I love mail, sending and receiving.  The fact the post office might not be delivering mail on Saturdays makes me sad. 
• My longest relationship was 1 year, 10 months.  
• Once my mom left for the weekend with the words "when I come back, I dont want it to look like a tornado came through!".  An hour before she arrived home, a tornado came through our town, destroying shopping malls, houses, my high-school.  It wasnt our fault.
• My highschool was as large as my college, student population wise.
• In highschool I worked at the local ice cream hut/hang-out.  It was fabulous.  To this day, I can still do a pretty good twist soft serve.
• Ron Paul is my very favorite politician.  
• I was notorious for locking the keys in a certain car.  We definitely got our AAA money out of that one.
• Ive watched the movie Titanic close to 100 times, if not over.
• I once convinced a group of kids that I was a real life princess.  They (and mom) believed me.  It was fabulous. 
• When little, I would sign my name and say "Be sure to keep this, I'll be famous someday".  Such a princess.
• I love men in suits.  Its a weakness.
• My love language is gift-giving.  I love to give gifts (even if its small) as well as receiving.  
• My family and I have spent the night with a pack of coyotes.  They were so close you could feel and hear them sniffing our scents.  I dont think my sister, brother and I have ever snuggled that much in one night.
• One of my pet peeves is when people complain about having too much to do (Im not going to say I never commit this crime).  Just do it.  
• I believe the welfare system needs to be re-evaluated. 
• Fashion is powerful.
• With regards to friends, quality over quantity always trumps.  
• I've gone over a waterfall in a kayak with my sister.  (I wont admit how large the waterfall was).
• Once while babysitting my siblings, I got this great idea to make a fire for smores.  So we used one of mom's pots, got some sticks from the backyard, used some lighter fluid and started a fire.  Ruined the pot.  Burned the patio table. Almost set the deck on fire.  Still thought of as a cool babysitter by my siblings.
• I love champagne.  Bubbles.
• A rule was more clearly defined in the college handbook due to my, um, abilities to work around rules.
• I dont believe in soul mates.  I believe in love.  I believe in falling in love.  But the thought of one person out there just for you doesnt work for me.  Im not that romantic.
• However, Im romantic enough to love the idea of a prince charming arriving without any effort.  But then Im a realist too. (:
• The best days end with good night and love you's, either said or through text.
• I believe your work reflects your determination.  If you want that great job with a fabulous office, then I better see your butt working for it.  It rubs me when people are handed things in life.   
• I believe there should be a book written about Abe Licoln and his "real life".  His real, cocaine buying (I have read proof of this), depressed life.  The title: "The Other Side of the Penny".
• I make up words, often, without realizing that they arent words.
• I have a very quick rebound rate.  Give me 10 minutes to cool off and I'll come back, apologizing for anything I've done wrong and then go on living in life.
• Unless I run away from home.  Then I may be gone for a while.  (;
• My overall goal in life is to get through to my last day with a smile, no enemies, have learned from my regrets, and ready for the next stage of heaven, where I hope they serve Starbucks. (Wouldnt it be awesome to drink Starbucks with God? Yes.)
• I look forward to eventually turning this all in to a book.
• When I cry, my whole face turns ugly.  I try not to cry when people can see me.
• I dont have any special talents, like touching my nose with my tongue.  I cant even throw a yo-yo.  And I'm ok with that.
• My favorite place to be is on the shore.  My second favorite is on top of a mountain.  
• My family tree is quite interesting.  And I learn something new all the time about it.  I love it.o
• I feel better about life after writing down things about me. The end.

Have a great day sparklers!!

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

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

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.

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

On facebook?

Me too!!

Like The Sparkled Life page to connect with other MS sparklers or to pronounce your MS Sparkler supporter status!!!

<3

https://www.facebook.com/thesparkledlife1

https://www.facebook.com/thesparkledlife1