Rx for Ways to Help

Want to become my best friend?  Want to learn how to love me and support me? 

 Take your pick, I made a list. 

It was like a doctor's order.  Or at least I'm pretty sure that's what the prescription said - you can never really tell with their handwriting. 

Technology

Snapchat

I love seeing your life and your videos and love seeing who can be sillier during a crazy game of snapchat playoffs.  No shame when snapping. Add me at: sparklewhattttt (thats 5 t's...dont ask, can't change it).

Trivia Crack

Do I even have to explain?  @elizmartin001  (I have about a 50% score so you're bound to win at least half the games we play.  It'll boost your ego for sure.).

Pinterest

See something cute?  A dress that is just babe?  A funny picture?  Share it with me @sparklebutonce.

Instagram

If we aren't following each other yet, add me @thesparkledlife and DM me to remind me to add you. (:

Articles

I love reading all the articles: fashion, self-help, business, news, one-sided political rants...all of it.  Send me some of your favorites.  Your thoughts.  Let's discuss who looked best at the award shows and who Chris really should've picked to go home during the Rose Ceremony.

Starbucks

Yes, it gets its own category.  And really, do I need to say more?

Communicating

I'm not only stuck at home, Im pretty much stuck in bed.  Meaning that we should probably start communicate more (otherwise I might go legit crazy).

Snail Mail

This is my favorite type of communicating.  I'm that old lady that's joy is waiting for the mail to arrive (not ashamed).  A little card is all it takes - and I love responding!  Let's bring snail mail back and start pen-palling.  (email me for my address: thesparkledlifegirl@gmail.com).  

Call/Text/Email

Communicating is key to my life right now.  My poor dog has been really great at listening to my issues but I feel his patience is wearing thin.  We can discuss anything - the other day a friend and I spent a good two hours just exchanging our favorite classic music songs via youtube.  It made my day. (email me for # : thesparkledlifegirl@gmail.com).

In the area?

Show me your skills!  Come paint my nails, do my hair, show me your magic tricks.  Come entertain me!  But for real.  I'm very limited in how I can entertain and will probably not be fully myself (as in we won't be having any random dance parties and I may still be in pjs and I may only have an hour or two of energy); but I have this great mom that will make you a nice cup of coffee (we of course carry Starbuck Via and Starbucks Keurig).  I also sometimes ha ve cookies for guests.  Enticing right??

Long-term

We're of course hoping that this episode will be short but are starting to plan for the long-term (I'll be sure to update on the happenings in the next few days - it's a page turner).  

Take me to a concert

Live music is just about my favorite thing to experience.  And go figure, very disability friendly.  Check out the concert listings in Pittsburgh and pick a concert.  And then let's go!  

Take me on a cruise!

So prior to this episode I had high dreams of taking myself on a cruise - a true vacation.  And then I had to go and get the wheelchair from the basement and kind of put a pin in my cruise plans.  But then....I was thinking maybe someone would want to go with me!  If you're interested, let's discuss.  

Come visit or Suggest a Visit

Seeing loved ones are always great - and Pittsburgh is a lovely city!!  Even though currently I don't think traveling is an option, it is something I hope to pursue shortly.  So let's chat. 

T-Shirts

Want to support the MS cause?  Visit The Sparkled Life Skreened store for some fun t-shirts.  And then wear with pride (and be sure to snapchat it, instagram it, email me it, and text me it.  Hell you might as well just wear it when you come visit me or when we go see Maroon 5). (:

http://skreened.com/thesparkledlife

Cute right?

Just Be There

Just being there helps in more ways than you could know.  Don't be afraid to reach out in whichever way you feel comfortable.  Friendships start in the most interesting ways.  Friendships are strengthened when we stick together during the tough times.  Let's build a community of love.

From Wheelchair to Walking in Under Two Years

How did I go from wheelchair to walking in under two years?

Well...

I just did it. 

Ok maybe it really wasnt that easy.  (:

It really took a few months in the hospital, 100's of falls (still falling), a lot of courage, discipline, hope, strength, and honestly, me losing feeling in my right arm to just be like, "ok Im just going to teach my body to learn to walk again".

And that's what I did.

I retaught my body how to walk. 

It wasnt a diet.  It wasnt a drug.  It wasnt a therapy.  

It was me, on a beach, taking a deep breath, and telling myself to put one foot in front of the other.  

And they've just kept on walking.

This was me two years ago, almost to the day.  

This is me today, walking around like no big deal.

and can we check out my shoes? um yes, they're like 3in.  love.

In two weeks, I'm biking 50-75 miles in Bike MS City to Shore 

(more info: http://main.nationalmssociety.org/site/TR?team_id=395569&fr_id=22817&pg=team).  

That's even more of a big deal.  Especially because on top of relearning how to walk, I also had cervical spine surgery this year.  (It's been a great 10 months).

I saw the other day a picture that said:

"MS is not a death sentence, it's a life sentence."

Actually, for me, MS kind of is a death sentence.  I will die with MS...it will lead to my death (unless there is a cure first...another plug to donate.  The money donated to Bike MS goes to a cure. :D).

I will not let MS be my life sentence though.  I will live my life, wickedly awesome, with ms in tow.  I will not be ashamed of my MS. I will not let it control my life.  I will adapt, leaving sparkle footprints wherever life may lead us - that is, ms and me. 

If you in any way feel as if you cannot accomplish something because of a disability or because someone said you cannot, or for any other reason, stop. 

First, you dont need that negativity in your life.  

Second, your disability/life will limit you, yes.  It will slow you down.  It will make you cry, hurt you, throw you back, make you question.  

But instead of the word cannot, adapt.  No matter what happens in life, you can adapt to meet those goals, or adapt those goals to meet your life.  

We are limited and yet when we become adaptable, life really becomes limitless.  

So there you have it.  There is no secret.  I just adapted my life with MS and relearned how to walk.  I am no different of a person now than I was when I was in that wheelchair.  And I am most likely guaranteed another round of days in that wheelchair in the future.  

And when those days come, I will, as before, learn to adapt. (:

And das it.

Love, Eliz 

PS: THANK YOU to all who have donated to Team Sparkle for Bike MS City to Shore, happening September 27-28.  Again, to learn more about our team or to donate, see the link below.  Every dollar goes towards finding a cure and helping me continue my life of adaptions.  I may look good but the MS is winning me over on the inside.  Help continue the sparkle cause and I promise to continue the sparkle love. <3

http://main.nationalmssociety.org/site/TR?team_id=395569&fr_id=22817&pg=team

Everyday

Pick me up, oh, from the bottom
Up to the top, love, everyday
Pay no mind to taunts or advances
I take my chances on everyday

Its no big secret that Dave Matthews is one of my favorites.  And the above lyrics I hope illustrate a reason as to why. 

I've secretly (ok maybe not secretly) been adapting this song as my life anthem as of late.

Meaning, Ive just been living, everyday. 

Taking my chances, everyday.

It's hard.  Im no way closer to being healed.  In fact, Im probably taking some extra years off.  

But Im happy.  And Im living.  And I get to be again.  

I know its also difficult for those around me; they want to fight for that cure.  They want to fight for that answer.  They want to fight for me. 

Is it too hippie like to just say instead of fighting lets dance?  Lets talk?  Lets love?

There is a quote that I love from Voltaire,

 "The art of medicine consists in amusing the patient while nature cures the disease". 

Shoot.  How much more simpler could I summarize all that I have learned thus far?  

Life lately has been an exciting adventure and I am so looking forward to the next chapters.

This past week I had the opportunity to go to Philly to see the bestie Regina.  We had some delicious foods and sported my awesome walking skills throughout the city.  #nbd

Next I traveled through the various East Coast cities to find myself in Washington DC.  DC trips are always a little rough.  This is where I was diagnosed.  This is where The Sparkled Life began, and it wasnt a pretty beginning.  

It helps though when I get to see some of my favorite people like my good friend and mentor Bobby, his wife Patti, and friend Mike.

(Oh and yes, I chopped off my hair.  Over 12 inches.  With my "dead" arm, the long hair was just too much to handle.  So short hair it is.  Thanks MS for always making me so fashionable. #jk)

Saturday I had the opportunity to go and see/experience/dance with Phillip Phillips and OAR and it was, amazing.  I cant even.  

Like the best ever.

A lot of fun, a lot of adventure, a lot of good words.  Mike and I are obviously #winning at life in this picture. 

Living is fun again.  Im so thankful.  In the dark of the night I do get nervous about the future and by the future I mean like tomorrow.  Everything is progressing so fast.  But then I just take a breath, remember God's love, and brace for the impact.  Everyday, I'm living.

If you are sick, if you have a disease that limits your ability to "live", do not be discouraged.  Do not be afraid.  You are not alone and life is not over.  Far from it.

Yes, you might not be able to live the same life as before; but this means you get a make-over.  Which is kind of awesome.

Here are a few things that I find help the process of living "everyday", some activities that I love:

1. Instagram (hello hashtags)

2. Starting a blog (why not share your story?  I bet its good!)

3. Online shopping (Download the app Keep.  You can thank me later)

4. Read.  Get those books that you never had the time to read and start reading.  If you dont like the first chapter, close it and move on.  My reading secret is I read the last few pages after the first chapter and then try to figure out the way to the ending while reading the rest of the book.  Often Im surprised.  

5. Binge watch a tv show.  Tv gets a bad rep; there are some really good, gets you thinking TV shows out there.  I highly suggest binging on those rather than reality tv.  Thought no judgement if Real Housewives is your jam.

6. Snail Mail.  I recently rode a bus with an old man who gave me great wisdom; write a card to each and every contact that you have.  Even if there are 1000s.  The ones that respond, they are the ones you invest your time in.

7. Travel.  I have the freedom to pick up my bags and go visit all my loved ones quite often and Im super thankful for the opportunity.  Traveling with MS/sick is not easy.  But it is possible; Im living proof.  Stay tuned for some tips.

8. Ponder.  Life is so crazy that often times we forget how important it is for internal growth.  And the best internal growth I've found does not come from books.  It comes from just thinking, pondering.  Having no direction with your thoughts and just letting go.  You'll be surprised where it takes you.

Keep living sparkly loves!

Love, Eliz

Diplopia - A Funny Word for Pirate Life

I dont even know how to tell the story of my life the past week because it seriously seems made up, it's that crazy.

Crazy, dramatic, unnecessary, and all other words that would fit in those catagories.  

The hospitals, clinics, drs, research facilities, MS society...they all express the necessary life function of keeping your stress levels at an all time low.

At first, this was one of the hardest things to achieve as I had a stressful life.

But now I can say with no hesitation that my life, even with this crazy disease, is (mostly) stress-free.

The stress that I do find comes from: hospitals, clinics, drs. research facilities.  Do we see the irony there?

I'll summarize:

After numerous attempts to contact my MS specialists office (a MS nurse, a PA, someone!!), I received a phone call from the answering service saying that the office would like me to go the ER. 

I had been told the evening prior that I should go to the ER from a resident.  But was hoping my speicalist would provide better news because I am not a lover of hospitals. 

But now it looked like that was the option.  So we went. 

The morning of as I was getting ready I was mentally preparing myself for the ER craze.  ER's have been a chapter of the most awfulness in my past and I was concerned about that day's adventure.  I was hoping for a quick, concise, ER trip. 

And then I stop, saying to myself "hell, Eliz, the chances of that happening are slim to none.  Let's be real."

Then I "hear" the voice of God say "if you dont believe in miracles, they arent going to happen."  To which I replied "JK totally believe!! Please let it come true!!"

And you know?  It did!  The had me in a room and hooked up even before my mom parked the car.  They were nice and compassionate and even entertaining (who knew!).  They even got a vein in one stick (this NEVER happens). 

I went for a brain and optic nerve MRI (if you've never had a ON MRI, it's pretty intense.  The pounding of the MRI is right there on top of your eyes and you have to keep them shut the whole time). 

Results came back and the ER dr and the radiologist confirmed some bad news: three new lesions, one of each optic nerve (left and right) and one in the cerebellum.  They were sending down neurology and I should prepare myself for being admitted for a few days.

Neurology came down, confirmed the MRI, did the exam.  We talked about options, how steroids were out since I dont respond (this is now very purposely written on my file at UPMC.  Thank goodness.  Dr's have an easier time reading files than believing patients.  Go figure).  We discussed potentially doing plasmapheresis again even though I just went through 5 rounds a few weeks prior.  It was very calming and we even discussed some of my other questions that I have (like the whole parkinsons disease issue) and how this could be addressed during my time. 

Neurology left and though I was disappointed about staying in the hospital, I felt like I was being listened to, that I was being heard, that I was being a part of the deciding situation. 

(Of course I stuck to my hospital uniform: t-shirt, leggins and toms.  Hospital gowns are not for the experienced).

And then it all changed. 

ER resident came in and said my Specialist wanted me sent home, with no treatment, and he would see me tomorrow morning.  

Im sorry?  We were all on the same page that this was serious, that action needed to occur.  But now the great MS Specialist (who doesnt even practice in the hospital) says to order me home and no one has authority to tell him no?  

"Uh yeah."

Can I get a second opinion?  blah blah blah

"Um no.  Not in this hospital."

#awesome

I'll spare my thoughts on the negligence of this situation. 

I went home and while I was happy to be in my own bed and not the hospitals, I was also concerned.  This was serious.  And I felt like I was being pushed into a closet.

The next morning I met with my MS specialist.  I left the office with no answers, no apologies (lots of excuses/explanations), and no plan of immediate action.  

My best option is to retrain my brain / eyes how to see.  I've retaught my legs, arms, speech, etc.  I can do this.  It just means the pirate patch might be around for a bit.  

And there is still the overall concern with how/why this is happening and so quickly.  But I cant think about it because there are no actions to take at this time.

However, if I may hint, I do have a big appointment in August with a dr who looks promising.  I have my doubts only because of the past two years history.  

But like what happened explained above, if you dont believe in those miracles, they wont happen.  

So I'm believing.  Im hoping.  Im praying. 

Oh and Im also relearning how to see.  Have I mentioned my body is kind of bad ass?

Keep up the love and sparklers!

Love, Eliz

 

A Pirate's Life (is not) For Me

So I'm sitting there at a baby shower, watching my lovely friend open her presents.  And then all of a sudden, there are two Megans. 

/What?!

I got the optic neuritis.

Optic Neuritis is a (according to wikipedia) a ulti-etiological condition consiting of the inflammation of the optic nerve.  In MS terms, it means you have a lesion on the nerves that connect your eyes with your brain.

Technically I had my first touch of optic neuritis weeks ago when my vision went blurry.  It got better with time and a round of plasmapheresis.

What I am experience now is different.  It is more commonly known as Diplopia, aka double vision.  It makes life look like this:

Optic neuritis is extremely common in Multiple Sclerosis.  It is often the main leading factor in many people's diagnosis. 

For me, it was the last piece to complete the long list of all the MS symptoms (I have experienced them all now; yay!).

Every doctor, every visit, every hospital would ask "how are your eyes" and Id be thankful, no problems.  Yet.

That's why when this hit, it really wasnt a panic button situation.  Instead I just called my parents and they came and picked me up.  We knew this day would eventually come and had thus prepared for it.

What I didnt prepare for was the dressing up as a pirate part.  In order for the double vision to be limited, one wears an eye patch. 

First, the eye patch itself is super uncomfortable.  Second, it doesnt fit underneath glasses; not being a huge contact wearing person, this is extremely difficult.  

You would think it more common for someone to want to wear glasses with an eye patch and thus have an eye patch that fits underneath glasses but this is not the case.  Believe me, I have looked.

It was never a life dream of mine to be a pirate.  I never played dress up pirate.  Even with the Pirate of Carribean phase, I only enjoyed it for Orlando Bloom and that was before he became a pirate.  

The patch just isnt doing it for me. 

The hardest part is that I cant DO anything about it; or rather, anything productive that would work.  I know what it is.  I dont need a MRI to tell me.  I dont want to be admitted to a hospital to be injected with meds we already know wont work.  There is no therapy that can be done.  

I feel helpless.  I cant see and there is nothing I can do about it. 

The patch frustration doesnt help.  When I say I've looked everywhere for a patch that will work for me, I mean everywhere.  There has not been a stone unturned.  I even contacted the nursing homes (that poor woman on the phone). 

And yet when I call my specialists office for help (which is their purpose right?  To help their patients when they have a flare?!), the response was "look online".  Really?  I am not here to waste anyone's time.  My past career was built around providing the most efficient procedures and answers.  You think I didnt look online prior to contacting you?  You are so kind to help me and really, your resources are top notch.  (Sorry, #dramaqueen moment).

Yes, it's just a patch.  Yes, it's just a symptom.  But just like that, everyone is looking at me again.  Everyone stares.  My doctor office is treating me like I'm some stupid silly girl who doesnt get "the program".  

Sometimes I wonder if people think that myself or others with disabilities do it for attention.  That we wear these enhancement devices for that second glance or hell, even a glance.  Do you really think that it's all in our heads?  That I'm making up this story for fun? 

Im frustrated and possibly it is because for the past three months I've had the opportunity to look normal again.  And I forgot how it felt.

And now I dont look normal.  I look like a pirate. 

A bloody pirate.

We hope that it will pass.  We hope that it will get better.  Yes, there are chances it could be permanent but we hope that it is not.  

But, as I've shared before, hope is one of the most difficult things.  Because it can disappoint.  There is no guarantee of a positive outcome if you hope.  

Yet, what other choice do I have?  I will hope till I either hear those words "You're cured!" or I take my last breath.  Life is too beautiful not to.  

Even if I now see two of everything in life.  The more the merrier.

The good news about all this is that my wonderful mom (Im assuming it was her) got another puppy for me!  It looks just like Sputnik and always stays right next to him.  They even move in unison.  It's really cute.  I've always wanted another puppy!  

Oh wait....

(:

Love, Eliz

Kind of Rockstar Status

From the pictures, it kind of looks like I've been living like a rockstar lately. 

Country Concerts, Wine Tours, Traveling, Backstreet Boys, Weddings, Graduations, Parties.  

I mean, it looks like I'm perfectly normal. 

(PS: Connor graduated!)

In pictures.

(PS: this is my good friend Whitney who got married this past weekend...wasnt she just a gorgeous bride? Love you!!)

Behind the lens is a different story. 

Sure, I am doing "well" by the standards of the past few years.  

But more than "healing" I think it's me learning more and more each day how to live with MS.  How to walk with no feeling in my legs.  How to hold a fork when I have no concept of strength in my right hand.  How to be mostly one handed.  How to see. How to balance when my gait wants to honestly make me look like I'm having a constant dance party.  How to manage my parkinson symptoms, my fatigue, my brain.  The list goes on and on.  

The girl behind the lens is still sick.  And it's really hard for me to look so good because I feel like people are forgetting Im sick. 

I dont need/want sympathy.  I really just want a hug or people not to forget that I'm fighting a monster inside of me. 

A lot of times we dont want to deal with things, hard things.  I've lost friends and relationships over this simple fact, that often times dealing with the stumbles in life is just too hard and it's easier to forget the problem (or the person).  

And it's good to focus on the positive, to focus on all the fabulous things I am able to do.  Of how far I've come.  Of the opportunities I have in the future. 

But we cant forget about the MS.  Because it is not forgetting about me.  It's still eating away at my body.  It's not stopping.  I have not found a drug that can help manage.  Every day is a constant reminder of my limitations.  Each morning I wake up praying not to have lost yet another thing.

There is hope in a positive and cure free future.  But it wont happen if we forget what we're hoping for. 

Ok now you must excuse me, I have an awesome party I must attend.  And by party I mean it's nap time. (:

Love, Eliz

Heal Yourself - Tips and Tricks

I'd love to preach to the choir that I have the secret sauce, the miracle drug that will heal all of those suffering from multiple sclerosis. 

But unfortunately I do not.  Damn it. (:

And ps: anyone who says they do, just run away.  They're totally lying.  Full of love perhaps, but lies.

Yesterday there was a great article in the Wall Street Journey titled "How Patients Really Can Help Heal Themselves".  And while I couldnt read it wonderfully (blah eyes), I received a wonderful summary.  It got me thinking, with what a powerful message behind it. 

Here are some of my thoughts.

Im technically a newbie to this whole medical, MS world.  But I have learned some thing so very powerful in the process of healing myself, and that is learning to listen to my body. 

I had a wonderful/terrible way of learning this.  Two summers ago (and then again last summer), when I was really sick (one of these days I will put some more definition in to what that really means), I spent about a month in rehab.  Every day I had a team of doctors, a team of physical therapists, a team of occupational therapists, a team of speech therapists, a team of nurses, and a team of plasma exchange specialists asking me a simple question:

 "how do you feel?"

This simple question had deep underlining messages; how did I feel translated to did that treatment yesterday work?  Is this drug working? Do you feel better? Worse? That new machine, did you like it? What hurts today? Hows your energy today? Why is it low? Why is it high? Are you hot? Cold? How are your tremors? Have any sensation in your legs? Think you can walk further than 30 feet? Whats your favorite color?

My answers that I gave them couldnt just be "Im ok".  They had to be legit.  They had to be truthful.  They had to be detailed and answer the what/why/how follow up questions. 

My answers were my ticket home.  I was not getting out of there until the doctors thought I felt good enough, until I passed a certain test.  And the only way I was going to make it was by listening to my body on what worked and what didnt.

So that's how I learned to listen to the most powerful tool I had: my body. 

It frustrates me that my body is literally attacking itself (the definition of multiple sclerosis...again, something I can more fully define at a later point).  My immune system is eating my nervous system.  That's so not cool.

But I have respect for my body.  I love my body.  And listening to it I have found has brought me from a wheelchair to walking. Kind of a big deal.

Listening to your body doesnt always bring good news.  By listening to my body we've discovered that steroid infusions, a way to decrease lesion activity, doesnt work.  That Ms management drugs dont work.  That going gluten free, doesnt work.  And on and on.

And then there are drugs that possibly do work a little, but the side effects are too awful.  I was on a high dose of the wonderful/awful drug Klonopin.  I was also extremely fatigued.  So I lowered my dose and guess what, I gained more energy (more pain too but eh pain is normal at this point).

You are your best advocate.  

Granted, I am not a medical person.  I did not go to med school.  I get my information from wikipedia.  I google things like crazy and I can connect the dots.  But Im no expert.

But I know my body best.  I know when something just isnt working.  I know when something is. 

And this has caused some clashing with my doctors.  I was on tecfidera (a ms management drug) for quite a few months.  And I felt terrible on it.  Literally just awful.  My body tensed every time I swollowed the pill.  And I use to do needles every other day.  This was much worse.

I wanted off.  This is a risk.  But I knew my body would be better without it.  And guess what, it is.  My body does "feel" better.  But it comes with a price, being that my ms is not being managed (not that it was doing any managing anyway.  Stay tuned for my next post, playing with fire, where I will discuss how Im a ticking bomb with no ms drugs.  It'll be a fabulous read).

Some interesting statistics from the article.

I approach the medical practice as I approach business: I am hiring you.  There is a transaction for services (I am paying to hire my doctor).  Thus, I have the upper hand.  

You must enter your doctor's office with confidence.  And granted, they are intimidating.  They know a lot of information.  They may not be compassionate.  They may ask hard questions.  But remember, they work for you.  You are hiring them for their expertise.  You have the final say.  You have the disease.

Also remember, doctors arent perfect, they're human too.  Trust them yes but double check.  Sometimes they might not catch a drug interaction (there are great phone apps where you can put in all your medications and herbs and keep track of interactions, etc).  Sometimes they might miss a test result.  Sometimes they may inject you with a high risk drug, only to find out three hours later your blood results came back positive for antibodies (not that I know from experience or anything). 

And last, tell the full truth.  Tell your doctor every thing.  I once had a nurse tell me in one of my hospital stays "there is no modesty in hospitals, only humility".  I now take this quote to all my appointments.  There is nothing I wont say (probably some things they wish I didnt hah).  But I tell them every type of vitamin, herb, food, juice, etc, I take.  Nothing is too small.  Nothing.  Plus, you might bring something to the table that could help research down the road.  

At the end of the day, here is what we know: there is no cure for multiple sclerosis.  There is also no right way to manage it.  Some people find that diet helps.  Some people find that medications help.  Some people find that exercise help.  

The moral of the story is you have to find what works for you.  And it will take time.  And trial and error.  If something works for someone else, and not for you, that is ok.  Because your body is different from theirs.  Your disease is different from theirs.  

This is your life, this is your body.  Listen to it.  Learn from it.

And who knows, you might just have the power to "heal yourself".

Love, 

PS: Again I apologize for any misspellings or grammatical errors.  My eyes are still recovering.  Send them love. (:

The Power of Adapting

A year ago I was returning from Cleveland Clinic where I had the lovely opportunity of stumping their specialists.  Their answer to my predicament: go back to rehab.

Within a day or two I was admitted to one of the rehab centers here in Pittsburgh, the same one where I had spent weeks the summer before. 

No one knew what to do.  Nothing was working, I was getting worse, and I literally thought I was dying.  

Fast-forward a year: I'm walking, without a crutch, cycling- on the rails, talking - just like normal. 

(Part of my tsl bike adventure today)

And while I am typing this basically blind (hell yeah optic neuritis), I cant help but think how thankful I am for where I am now.  Of the hard work that has paid off in the past year.  

And I mean hard work.  I couldve given up so many times.  I couldve just accepted my position and let it define my life.

But instead I took the situation and I adapted to the best that I can.

There's that common saying "I have MS but it doesnt have me".  It's a power statement agreed but I kind of dont buy into it (dont judge).  Because the truth is, MS totally has me.  And until there is a cure (#findacurealready), it will continue having me. 

Which is why instead of fighting ms, I'm adapting.  Im realizing my limitations and adjusting as such.  Im becoming more efficient and effective (hello MBA lessons) in my daily life so to preserve energy.  Im determining what is important and what comes second (ie less make-up, more friend time).  I'm taking the time to stretch it out, to watch my diet, to not just pop the pills but listen to my body.  

And it's working.

Well, sort of.  

(Ps: even my surgery neck scar is looking good. Love it.)

Let's be honest, I'm not symptom free.  And we havent actually found a way to slow down my progression.  Lesions keep popping up.  

It is so frustrating to me to "look so good" and being doing so well with my walking because to others, that means I'm great, I must not be sick anymore.

And while these are positive things, I cant see.  My sight is at about 70%.  I have a dead right arm - shooting pains from the shoulders down and no sensation from my fingers to elbows.  I'm relearning how to use it.  My feet have a reflex response of 0.  At night I lay in bed, my legs shaking with ataxia.  If someone/something touches me while Im walking, I will fall.  Fatigue is my unwanted best friend.  And the list goes on and on.

So if I've learned anything about this MS journey (and granted it's only been a little over two years...TWO YEARS!!), it's that I'll get better.  And then new symptoms will come on.  Remissions is not exactly a word I strive for because I have no guarantee of it.  

What I do have a guarantee of is happiness and peace.  Because those are two things that by my adaptions I can bring in to my life.  And through happiness and peace (and for goodness sake, sparkle how could I forget), I will learn to adapt with these new symptoms.  And I will continue kicking butt.  And I will keep creating awareness for a cure to the disease that is trying to rob me of my life. 

Moral of the story, MS might "have" you.  And that's ok.  I even say cry over it.  But then grab a kleenex and learn what you can do with your MS.  You'll be surprised that while you may be limited, you can still do more normal things.

Love, 

PS: For some examples on how I've adapted:

Cycling: with my gait and balance off, as well as with my cervical spine surgery, my ability to ride a normal bike is so far gone.  But guess what?  They make these fabulous recumbent tricycles.  Welcome back trail riding!

Showering: showering is the worst...legit.  The hot water drowns your body, the cold water makes you shiver.  I basically need a nap after each shower.  Plus it takes my hair 5 hours to dry.  So, I make sure to use organic deoderant daily and do a washcloth bath every evening.  It limits the showers I have to take. 

Insomnia: insomnia is like the evil best friend of fatigue.  You are tired all day then FULL awake all night.  So I've stopped taking naps during the day.  Use my bed for only sleeping (I read and work on my computer elsewhere).  I take some melatonin.  I do some yoga and meditation before bed.  I make it so easy for my body to fall asleep it just is tricked.

 (My friend Mary, friends for 15 years, at the Luke Bryan concert)

Activities: This past weekend I went to a Luke Bryan concert (gosh darn is he a sexy man) as well as a wine and food festival.  Both a blast.  Both a total body killer if not done right.  I made sure to stay in bed as long as possible, preserving energy.  I wore loose fitting clothes so as not to overheat.  I drank my water and ate good for you food.  I sat down when I could.  I utilized my disability parking pass so I wouldnt have to walk further.  I did breathing exercises if I became over stimulated.  

 

You will find your groove.  You just have to work at it.  It's different for every person (be weary of people who have the all inclusive answer for we are not an all inclusive group or disease).  Listen to your body.  Learn what hurts and what doesnt.  

And then, adapt.  <3

Plasmaexchange 3.0

Plasma-exchange. 

Aka as that time you lose all your blood.

Or rather, all your plasma in your blood.

Back in December 2013 I started to experience severe pain and lack of use in my arm.  I went to my neurologist thinking it was MS.  It wasnt...it was a slipped disc.

After a cervical spine surgery in January and a few weeks of healing, I was doing pretty well.

Until one day the pain and lack of use came back.  I went to my orthopedic surgeon thinking it was another slipped disc.  It wasnt...it was MS.

This back and forth way of living makes me feel like a tennis ball.

On top of all this fun Im experiencing vision issues (blurred vision), which is very common with multiple sclerosis yet something I had not experienced as of yet.  Optic Neuritis is the name.  It was only a matter of time before this symptom jumped up.  

(PS: looking at a computer screen is extremely difficult so please excuse any misspellings and such.  Im writing blind ladies and gents.)

After a meeting with my MS specialist on Monday, we decided to take the route of Plasma-exchange, or in fancy words, plasmapheresis. 

What is common with multiple sclerosis is that when a patient is struggling with a relapse, they will do a round of high dose steroids.  

But we all know I'm not common. (:

Steroids have never helped (or very little) with my MS.  They do a great job at making me irritated and gain weight and have insomnia though.

Because of this, we have sought out Plasma-exchange in the past to help me when my symptoms are high.  This session is 3.0 because I've had it twice before, June 2012, May 2013, and now.  

(We might as well schedule it for next year this time too.  PS researchers...I think this is a sign that the cyclical year has something to do with MS).

What is plasma-exchange?

Well, in my uneducated, non-medical words, you have a needle in both arms, with your arms laid out at your sides.  One of the arm needles pulls out blood (in this arm you wear a pressure cup as well as squeeze a ball for the full time to get your blood pumping), puts it in this big, sometime noisy machine, cleans out your blood's plasma, puts in a mix of synthetic and donor's plasma, passes through a warmer, goes in all this tubing across your body, and in through your other arm.

(the Team Edward shirt was a must...we have to add the humor to life)

It lasts anywhere from an hour and 45 minutes to two hours and 45 minutes.  I do 5 sessions, every other day.

The most difficult part of the process is finding strong enough veins for the needles.  Yesterday's procedure was very successful, with both veins remaining tight the whole session.  Often times my veins collapse but we're remaining positive this round.

So what are the benefits?

According to wikipedia, plasmapheresis is an important use in the therapy of autoimmune disorders, due to the rapid removal of disease-causing autoantibodies from the body's circulation.

In my again, non-medical terms, it gives your body a fresh detox in order for it to heal.  With MS (and lots of other autoimmune disorders), our bodies find themselves under so much stress during a relapse, not providing it an opportunity to heal.  Plasma-exchange gets rid of any bad things in your blood so that your body can focus on what is important at that time: healing.

 It is not a very common procedure in the US (very common in Europe and Japan).  I'm fortunate because UPMC (my hospital network) has a plasma-exchange unit. And even more fortunate, I adore the ladies and the dr that work in this unit.  They are so nice and calming.  I'd do plasma-exchange just to come visit them! (ok maybe I'd rather just bring in coffee...but that shows my appreciation).

Really the hardest thing about this whole story is that the plasma-exchange unit is in the hospital where I've spent the past two Junes in rehab.  I get sick to my stomach just thinking about it.  Granted, my weeks in rehab were very productive and I am entirely grateful for the experience and the hard work accomplished.  And yes, as I walked (WALKED) into the hospital I felt a sense of "hell yeah" as I realized how far I have come.

But what is truly terrible about MS is no matter how far you come, something else will happen.  Yes, I'm walking but I cant see.  Yes, I'm talking but I cant use my right arm.  It makes me want to cry because I just want a period of time where everything is just flat, normal.  

So I find myself with two options: sitting around waiting for MS to give me a break, or work like hell to live life fully, with MS in tow.  

I think I'm choosing the second one.

Love,

Ps: have you tried plasma-exchange?  Send me an email or leave a comment with your story!

 This wikipedia page does a great job at providing more information on the process and the  benefits: http://en.wikipedia.org/wiki/Plasmapheresis. 

If you have a difficult time with-standing steroids or have not been able to find any relief, I highly suggest asking your doctor about plasma-exchange. 

A Year with MS

When I was first diagnosed the collective "they" said that the first year is the hardest but then it will relax and things will become easier. 

I dont know why I expected this to be the case for me, when really my life with MS has done anything but follow the common course. 

This second year has been awful.  2013 was just a really hard year.  It definitely had its highlights (hello my little sister got married...big highlight) but in summary I believe I spent more time being "sick" than I have all the other years of my life combined. 

Hospitals, drugs, doctors, blood, procedures, wheel chairs, bed.  Just a full on circle of a terrible nightmare.  Anything that could go wrong, did.  To the point where the littlest good thing brought the biggest joy.  There is that silver lining.

I know, I look great, I sound great, I must feel great right?  Error.  Something went wrong because I feel worse now than I have so far.  But thanks for the compliments.  (:

When I first started this blog, it was for two reasons:

1. To communicate to the masses my health updates.

2. Therapeutic.

As I look to renew my life and resolutions in 2014, I think strongly about these two reasons and if they still "fit".  

While the google statistics show the high support for TSL, I feel every post is the same: 

I'm getting worse, we dont know why, hope, hope hope. Love, Eliz.

I know what people want to hear:  I'm getting better or at least staying the same.  And I feel like such a debbie downer when I have to find the words to express that I'm not.  

It's no longer therapeutic for me to write.  For one, it's physically straining, as my right hand has gone "dead".  I also only get about 2-3 good hours a day.  My heart just isnt in to spending 30 minutes posting a "I'm still sick post" in those good hours. 

All this comes to the conclusion: Im giving up blogging in 2014.  

I will miss it, some.  I'll miss the support I received, the people I met.  Its been beautiful and I will be forever grateful.

In the spirit of MS awareness, I'll still be flying that flag but through pictures instead of words.  I've decided to take a picture a day for the year 2014, with the hashtag #ayearwithMS.  I'll be sharing these photos on instagram and you'll be able to find them here: http://instagram.com/thesparkledlife#.  

 

2013 beat me up.  My heart, body and soul ache with emotional, mental and physical pain.  

I can only hope that 2014 will bring better days and healing powers. 

With love and the happiest of joys in the new year,