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

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