IVIG and MS - Plasma for one

I recently had an IVIG infusion and got a lot of questions about what IVIG is and how it is used in relation to Multiple Sclerosis.

Great questions. 

I'm not entirely savvy on IVIG usage medically, but I can give a non-technical little overview.  With the help of google and some medical documents of course.

So first, why we choose to use IVIG.  In my DMD history I've used Rebif, Tysabri, Tecfidera, and Rituxan.  I have also used Plasmapheresis as a treatment.  Rituxan was my latest DMD and I really did give it a good try.  My body has a hard time with all drugs but rituxan, damn, it was brutal.  Quality of life was not worth it.  And, we couldnt confirm if it was or was not working.  It was an easy decision for me to be like "no thank you, no more".

I went with no DMD medicine or treatments for 10 months and though I wouldve loved to go further, my doctors advised me to consider a treatment.  I agreed.

I received IVIG at my MS clinic's infusion center at a hospital in downtown Pittsburgh.  The nurses were fabulous and got a IV line in one try. I love nurses!

My Advice for Those Living With Multiple Sclerosis

Back in June I worked with Healthline to film a few videos.  One of the videos we did was my advice to those living with multiple sclerosis, especially those recently diagnosed.

This is the finished product.

Click here for final video.

How I Stay Positive

I get asked often how I remain so positive.

To which I used to answer, with all sincerity: I just do!

It wasn’t till lately when someone challenged me with the question: 

what are the actual steps you take to remain positive? 

that I saw there were actual, distinctive things I do to remain positive.

First and foremost: I honestly believe the best medicine you can give your body is a good mood. And science thinks so too. Thinking positive thoughts in your head releases certain hormones that relax your bod and equip it for stress.

A firsthand example of this was when I had my bicycle accident. As soon as I landed I knew I’d broken my elbow and could see my humerous bent oddly and pointing out. I panicked. Someone called the ambulance. Someone else took care of my bicycle. There was a Mom with her kid. For some reason seeing that kid brought things in focus for me.  I cant say bad words in front of this kid (this was after I let a lot of f words slip).  I cant let this kid, staring at me terrified, see me cry.  I reminded myself I needed to stay calm, to focus on something good. I started repeating to myself, "I’m going to be ok. I’m going to be ok".  Outloud. And I believed it. So much so that by the time the ambulance got there, my blood pressure was in normal ranges. The EMT was quite impressed.

So, positive thoughts = good.

But how do you run to them easily when the going gets tough?

Training. Just like with anything, it takes time, persistence, and dedication.

Step 1. You’ve decided to adapt a positive lifestyle and mind and remain positive when the going gets tough. You have to want it.  You have to be willing to work for it.

Step 2. Remind yourself of this. Write phrases that remind you on postits and put it where you'll see it many times a day. Change the background of your phone to a positive phrased wallpaper. In those moments you become overwhelmed, you’ll see these reminders and then you’ll go back to step 1: decide to remain positive.

Step 3. Have a go to positive uplifter. For me, it’s puppies. Whenever I’ve had a rough moment where I just don’t want to be positive, I go to the puppies. Either in real life or on instagram / Pinterest. This is an immediate mood lifter. I then see one of my reminders, and then I’m back at step 1.

Step 4: gratitude list. Make a list of all the things you’re thankful for. Keep it within arm’s access. Go to it to add to and remind yourself often. Yes, mine has the basics: faith, family, friends, puppies. But it also has Starbucks. And pizza. And cycling. And the color rose gold. And Paris. And pool days. And so on and so on. It’s a beautiful list of all the things I’m surrounded with that are positive.

Step 5. Reward yourself. Every year on my anniversary with MS, I get myself a present. Something small (an engraved ring) to something big (my hope tattoo), it’s a reward. A reward for making it through the past year with a positive mind. It’s not always easy to do; some days, it’s REALLY hard. But rewarding yourself reminds your brain and your soul, you’re doing great, keep it up.

Step 6. Condition. It helps to have a friend in this stage, or a coach. For me, it was someone I was close to when I was newly diagnosed. Whenever I’d start weeping or complaining, he’d point out a positive lining. It was REALLY annoying. It caused many fights. Why couldn’t he just let me be sad? Then slowly I started to listen. I started to recognize the good. I then went from recognizing to LOOKING for it. And, in every situation, to this day, I’ve been able to find it, to find something good, positive. Even if it’s just me being able to breath: that's positive; I’m alive. 

You have to work the brain muscle and condition it to this type of programming. With time, it will eventually become so instinctive, you won’t even have to think. You just go there. You just are positive.

All this sounds good and attainable.  But what about on those really bad days?  The days where the light is dim and the positive light is dimmer.  What then?

• No “triggers”. First you have to determine what the triggers are. For me, it’s Facebook (all my friends are living life without me!), dramatic shows/books/movies, depressing music. These melt me in to a state. This also relates to what I surround myself with socially: on media and in real life.  Some people may be a trigger for you in some way (I really dislike the word trigger but here it is applicable).  And for whatever reason it is, maybe just take a break for a bit.  It can also be that someone is continually negative- when you're trying your best to be the opposite, their energy can be depleting.  As has become a very strong saying between my bestie and I, "bless and release".  

• Quiet. On bad days, I’m very quiet. This usually is because on bad days my speech isn’t working.  (: But also it’s to save energy. I put that saved energy in to healing my body from the hard day.

• Have a cry. Or reschedule. If necessary, I’ll have a little cry. Just a little one. And then I’m done. If I feel like I need to cry more, I’ll “schedule” it for another time (no joke). I’ll save it for, say, 9pm that night. By pushing it out, I give myself time to find something positive that will outshine that sad moment. If I need to cry though, it’s scheduled, just in case.

• Make a list. You don’t have to be productive to trick your brain in to thinking it is. If my mind is overwhelmed with thoughts, I’ll make a list of them. Done. They’re on paper/in my iPhone notes. No longer in my brain. Sounds silly but this works; my phone has so many lists on it it's probably quite obsurd.  The cool thing about this, when looking back retrospectively at "bad day lists" of what I'm anxious/worried about, these things I thought were so challenging, I've overcome.  

• Change the clothes. Even if it’s just switching from pjs to a different pair of pjs, I change. This is important in keeping respect for your body. Showering is just too damn hard some days but changing clothes is attainable. It gives me a little reminder I’m not giving up on my body, I believe in myself enough to change in to clean pjs.

• Talk to your go to. And don’t talk about your disease outside of “I’m having a bad day” and maybe a bit on what that means for you in that moment. Get lost in the conversation. Even if it’s just for 5 minutes, you contributed to society. You let your mind focus on someone else. You got distracted.

These steps help me to calm my body down. 

And then, I return to the basics:

Deep breath. Quick prayer. Can I be positive and look at puppies? Nope, still a bad day. Ok.

2 hours later: deep breath. Quick prayer. Positive time? Maybe. Ok.

3 hours later: deep breath. Quick prayer. Brain goes back to conditioned mind. I see a post it. Is that a puppy video? Omg puppies are so cute. Ok. Not every day is good but there’s good in every day. Tomorrow will be better. Good night.

Then there are the quick moments: your doctor just gave you bad news. You have to drive home but can’t stop crying. You just want to crawl in a hole. What do I do?

Breath.

Do a body scan.

Head. Shoulders. Back. Hips. Legs. Arms. Am I contracting those muscles? Release. Contract. Release.

Breath.

Look at you- you just took your mind off the bad for a few minutes. You’re going to be ok. Repeat that over with a deep breath in between each movement. You’ve got this.

All this might sound ridiculous. And even while writing it out, I thought “really Eliz?! This is what you want to share? How you schedule your cries?!”

Damn right it is.

Because this is my recipe.

I’ve had some terrible things thrown at me. And yet I still wake up every day happy. Because why not? I’m alive. I’m beautiful. I’m breathing. I have puppies. I have God. I have my family and friends. I have Paris. And I have Starbucks.

Life is good.

Something I want to note is depression and MS have a very strong connection. If you’re feeling like you can’t think of a positive thought no matter how hard you try, seek counseling. Talk to your doctor. It does not mean you’re weak. Ms causes brain damage through demylization and sometimes that can cause depression. Reach out.

"OMGGGGGG" - a new post

OMGGGGG

The sparkled life blog is back!

But wait...didnt I swear off writing and blog posts February 2016?  Isnt the previous post titled "the last post"? Are we trying to make blog writing happen again?

Yes, to all the above.  

I had sworn of writing on the sparkled life.  Why?  It got too difficult.  I needed a break.  My finger muscles contract making typing difficult.  I didnt want to be known as the "the girl with MS".  I felt I had nothing more to say.  And on and on and on. 

Recently I was at my neurologist where there was a new patient, a woman my age.  She didnt look scared but she did look overwhelmed.  It took me back to when I was first diagnosed and how I had wished I had someone to tell me it was all going to be ok.  

That's why I started this blog in the first place - because I had searched for someone, anyone, with a "story like mine" and couldnt find one.  All I could find on MS were stories from people with less hard symptoms like a numb thumb (any symptom is challenging but where were the people who could no longer walk/talk/use their arms?!?!?) or kids with info on how they "healed" their ms with witchery.  

So, I thought, "hell, I'll write the story".  

That was a while ago.  And I had forgotten that flame, that ambition, until I saw this girl the other day.  I so wanted to go up to her and tell her its going to be ok, that she was going to get through this, that it was going to hurt, it was going to be a bitch, but she was strong and was going to make it. 

Butttttt you cant really do that in doctors offices.  

Instead, that fire ignited in me again.  I thought about all the lessons and mistakes I've gained in the past 5 years since diagnosis and how they just might be able to help others.  And maybe, that girl will get a random facebook message from her aunt with a link to this blog.  And she'll be comforted that shes not alone.  

And that's why Im back.  (:

The Last Post

I could hardly hold my head up.  I had been in the office for hours now, sitting in my wheelchair, being evaluated by neurologists, demanding the same information for the 1000th time.  I was too sick to be anywhere but bed.

I asked the question, as I had done over a 100 times prior, "What should we do?"

He stared back at me and paused; this medical giant, who was widely respected as being a MS genius across the nation, again, didn't have an answer for me.  In his own little "doctor humility" way, accepted the defeat, and said that he wouldnt be offended if I decided to go someplace else for re-evaluation.  

I smirked but didnt say a word.  

I was traveling to Minnesota Mayo Clinic in 5 weeks to do that exact thing. 

I had been really sick for a long time.  The funny thing is, whenever I would be "really sick" throughout the past almost four years, we always comforted ourselves by saying "it cant get worse".  And then it did.  Literally I watched as my health went from bad to worse to extreme to what the hell is even going on am I dying or is everyone just lying???

So I called the Mayo Clinic, put in an application for an appointment, and my request was granted.  Just like everything else I held back any hope in receiving answers or help, told myself I would give Mayo Clinic a try and if that didnt work, John Hopkins.  Then I'd be done. 

January 3rd 2016, fresh in the new year, I took off on a plane to Rochester MN.  I had actually been to Rochester many times for an old job and felt very comfortable traveling myself.  Looking back, it was an extremely crazy feat to seek to achieve but what can I say,  I'm stubborn.  (Props to my parents, friends, and family I left behind worrying about me every moment of the day). 

I Hope You Dance

Life is very similar to driving a car on a highway.  You have those days where you're breezing along, windows down, radio up, just loving life.  

And then for some of us, a pot-hole comes along.  And try as you may, you hit it.  Sometimes the damage isn't too bad, you can keep going.  Sometimes, it rips the tire and you just need a spare.  And sometimes it knocks off the whole alignment of the car and you end up stuck on the side of the road, waiting.  

My story is the stuck version - one day I was doing all the things a normal 26 year old does and the next I was uprooting my life and moving back in with my parents.  With a walker.  My career stopped, my relationship stopped, some friendships stopped, my dreams stopped, my growing closet stopped.  My life was put at the side of the road.  Thanks to a pot-hole.

And now I find myself a step further behind - in a wheelchair.  Some days not leaving bed.  Some days in the hospital.  For two months I didn't leave the house except for medical visits.  It's like now I'm not only stopped on the side of the road but it's snowing and cold and scary and dark and AAA isn't answering.  

Meanwhile, everyone else's life is moving on.  People are getting married, moving the career ladder, having parties, traveling the world, making babies.  And I'm here like "wow I showered today!". 

The hardest reality of this is coming to terms that in order for others to keep living, it sometimes means without me.   

You see me on the side of the road, broken down.  But yet you have life ahead and a time crunch pressing your engine.  Sometimes you just can't stop.  

I want to be mad at you; I want to be furious that you saw me at the side of the road and kept on driving.  I want to be mad that your car works, that you somehow missed that pot-hole.  I want to be in your warm car, dancing to the radio, going to wherever your next stop is.  

And yet, I'm stuck on the side of the road of life.  

I selfishly fear that I'll become forgotten.  I'll cross through your mind occasionally and you'll think of our good times, just as you pass me by on the road.  You'll go on with life.  Just without me.  

I feel like this is the part of the post where I insert the song "I hope you dance".  Because I truly do - I hope you dance, you live, you smile, you experience, you have fun.  I'm glad you missed that pot-hole, I'm glad your car is still working.  I hope it continues for many more stops.  And if you do hit a bump, I hope it only requires a spare tire and you can keep on going.  

I want you to keep living.

I just wish I could keep up and be there to do it with you.  

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.

A Sparkle Christmas Message

To all who sparkle:

Merry Christmas and Happy Holidays!  

We meet again at the time of year of celebrations, champagne, and the birth of the Lord!  

The past few weeks have been spent in preparation of this day (or if you're a procrastinator, a few days shipping thanks Amazon.com).  We've put up lights, sparkle, wrapped presents, baked yummy goodies, all for this day.

If you are with your family this holiday season, be thankful.  They might get on your nerves and drive you nuts and want to make you drink all the eggnog (the pure definition of family), but have peace in the fact that you're together.  The love that you are surrounded by is one of earth's most beautiful miracles.

If you are alone this holiday season, know you are not alone in life.  For whatever the circumstances are that you are alone, they too will pass.  If you are alone still for Christmas next year at this time, contact me.  You will have a home here.  

If you are married this holiday season, be sure to tell your partner that you love them before going to bed.  It can be easy to get caught up in the craziness of life/holidays/kids/work/trivia crack; pause for a minute to say thank you.

If you are single this holiday season, it's really quite ok.  You are not defined by your relationship status but rather by your love and your works.  Let those shine.  And maybe linger by that mistletoe?

If you are healthy this holiday season, CELEBRATE! (but for real)  Health is a beautiful thing, do not waste a moment of it.

If you are ill this holiday season, know that Christmas brings hope.  It is the celebration of the birthday of Jesus which is a reminder of what life is really about - goodness, peace, love, and the hope of Heaven.  Encourage that hope within yourself.  It might disappoint in this life but I promise that it comes with a pain-free guarantee in the next.  

If you are reading this this holiday season, know that I am thankful for you.  The holiday's are beautiful due to your help in the sparkle.  

Wishing you only the best wishes.

Love, Eliz

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. (: