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

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

Welcome! and updates....

Welcome to the *new* and continued to be improved The Sparkled Life blog, with it's own domain (www.thesparkledlife.org).

I'll continue to use my tumblr are part of the media package of The Sparkled Life (fb, pinterest, instagram, etc) so do not worry if you cant find this site. (:

First, thank you for giving me the courage to create and continue creating this site.  It's been a journey (to say the least) to get to this point and I'm excited to continue documenting it.  And it's all thank's to your continued love and support.

Second, ewh.  That's how I'll explain the past week or so.  Ugly.  For some reason (we are fairly certain its a pseudo-relapse) I've relapsed to an ugly but rememberable place.  

Remember last June, when I couldnt talk, walk or use my hands very well?  That place.  

Ive spent most of the past week in bed, on meds.  What is worst this time (as I expressed earlier) is the pain.  I have terrible tremors and the HURT all over my body.  My body is never settling.  

To compensate, I was prescribed medicine to help.  Which I can tell they have had a slight effect.  

But they also have this side effect of, well, in lyric terms: "They making me crazy, dont give up on me baby".

My poor family.

On Monday, after no improvement over the weekend, I had my third lumbar puncture.  It went well, only hurt a minor bit.  So far no spinal tap headache yay!

(I will eventually give the accounts of the three lumbar punctures.  Its quite a tale.)

I've been given the ok to go back on my MS disease drug medication (my infusion) and I will start again Monday.  And then hopefully we will have a "case closed" by the end of the week.  

I wont lie...it hasnt been easy.  When it rains it poors and this week was full of thunderstorms.  

But we hold on to hope and keep our heads up and find new books to keep me occupied.  Plus, I have a princess status to uphold.

I'll get back to where I was.  Stubborn I was born.  Tired I have just become.

Hope y'all are doing well!  Dont forget about your taxes! #damn

Much love, Eliz

PS: Dad and the twins came back from their jeeping and checking out camp day (they're going on a back-packing trip).  

(If that doesnt put you in a good mood, then I'm not sure what will. LOVE!)