#cureMS

Today the MS world is tagging all items with #cureMS in order to create more MS awareness.  

Obviously it is known that MS awareness is something that I'm 100% for; I feel my entire life has become so MS focused and a storybook of MS awareness.  I even have these tad bits of fear that those around me are getting extremely tired of the "Eliz has MS" party.  

It goes without saying that I would much rather be having sparkle parties celebrating job promotions and the such.  That is not the case though.  

 

That fear gets pushed aside when I hear of other MS stories of suffering and pain.  It gets pushed aside when I think back on my own journey.  For each story is only encouragement that this truly is a fight for a better life.  And I'm not one to turn down a fight.

Today I was reminded of a humorous event during my early days of being diagnosed.  As I have shared before, my MS diagnosis was overnight.  One day I couldnt feel my legs; went to the hospital; had a MRI; received a phone call at 10:30pm stating I had 6-8 lesions and had MS.  Crazy.

The next day I was sent for a lumbar puncture (my first of three in 1 year) to confirm the diagnosis.  I was pushed in the hospital bed to an operating type room with a huge fancy machine.  The doctor came in and explained to me the risks and what was going to happen.  

Though lumbar punctures in the past were done manually, this hospital had a machine they used to be more precise and accurate.  The machine was a fail.

It hurt.  The doctor said there would be a little bit of pressure but there was an intense level of pressure and pain on top of the awkward numbness.   Having a needle go into your spine is no small deal.  It took quite a while to actually get a flow for him to extract some spinal fluid and the pressure remained.  I was advised to lay flat on my back for 24 hours to refrain from getting a leakage in my spine.

Fast forward 5 days.  Im home in Pittsburgh, lying on the couch in pain from my back and experiencing a spinal headache.  This is caused from the hole in your spinal chord not closing up and your spinal fluid leaking out.  Its described as one of the worst pains a person can experience. 

On the way to my first out of the hospital Neurologist appointment, we hit a detour.  For those that dont know Pittsburgh, detours mean "good luck finding your way out of this crazy maze!".  There's no direct routes and no direct lines and its usually the safest to just go home.  

As mom patiently drove around in circles (this one of the most thankful time I was for my mom; she does not handle navigating well yet she rose to the occasion like a rock-star), I sat in the passenger side wishing I had gone to confession recently for I was surely going to die.  

The Neurologist took one look at me and knew I was in no shape to be doing anything in life and scheduled a blood patch.  A blood patch is a procedure where they take some blood and use it to patch the hole in your spine.  Outpatient, quick and easy with a 95% success rate.  Sign me up.

The nurses gave me something for the pain and to sedate me some prior to the procedure.  Mom went to the waiting room where there was a tv showing when a patient went into the operating room and when they came out.  15 minutes top I believe was the time they gave her.

45 later and my name was still on the operating room list.  

There I was, lying on my side with my arms stretched out in front of me.  I was very out of it but knew what was happening around me.  They walked me through each step: there would be a doctor with a needle on my spine and another getting the blood.  They would work together throughout the procedure.  

Needle goes in spine...blood line doesnt produce blood.  No blood to be seen anywhere.  I had warned them my veins were shot and now they believed.  A few moments of panicking as the doctors are conversing what to do; they cant leave a needle in my spine for long, it will only increase the hole.  

Before I knew it, the whole room rotated and the doctor with the spine needle was now in front of me.  He popped open an artery in my wrist; blood starting to spurt everywhere as I laid there thinking "huh, this is interesting".  

They got the blood, they put it in my spine and tada, the spinal pain was gone!  

All this happening while my poor mom was having a panic melt-down in the waiting room.

I remember thinking on the way home how crazy of an adventure that was and how I'd probably not have many more experiences like it.  Or rather, I was hopeful that I wouldnt.  

If anything, this situation is more humorous due to the fact that I've had many more extreme cases than this.  This seems minor now considering.  

And this is why a cure for MS needs to be found.  So that people do not have to "just get use" to terrible procedures and happenings.  Yes, the MS movement has come so far; there are new drugs being researched and more answers being sought.  And this work is due the many who live their lives with the hashtag of #cureMS; they are the true fighters.  But we're only partly there.

Help out the movement by creating awareness or by donating to Team Sparkle, who's proceeds go to the National MS Society and all that they do. 

Thank you to all those that have been on the journey so far.  Its been a crazy ride and its far from over.  We'll just keep sparkling on through!

Much love,

PS: If you ever find yourself in a situation where you need a lumbar puncture, find a doctor who will do it manually.  My other two LP's had extremely less amounts of pressure and pain and thankfully, no spinal fluid leakage.  And if you do find yourself with a spinal headache, get the blood patch.  Its instant relief!

Like TSL's Facebook Page!

Stay up to date with all things sparkle by liking The Sparkled Life's facebook page:

https://www.facebook.com/thesparkledlife1

 

And yes, I will take any opportunity to apply glitter.  

Love and hope today is fabulous,

 

8 Things to Make Life Easier

Ive always appreciated a life that is full of efficiency and effectiveness.  It is in my life mission statement (I'm such a nerd).  So why MS makes life more challenging with the amount of energy it takes to do things, it also challenges me to find new ways to make life easier.  Which I secretly love. 

Finding things that make life easier also leaves time to be doing more of the things you love.  We only have a certain amount of time; being efficient and effective doesnt mean to run through life faster.  It means to be able to have more time to enjoy the life your living and the people in it.  

Here are 8 things that I have found that make my life easier (and in some ways, even more cost efficient!!)

1. Lists

Yes, the ever loving making of lists.  We love lists: grocery lists, guest lists, who's our favorite celebratory lists.  Lists, though simple, hold so much power.

By writing something down, you are more likely to remember it.  It also helps to organize thoughts.  Head running in a 1000 different directions?  Write it down.  The focus ability will return.

Every evening I make a to-do list for the next day.  Some lists remain on the to-do list for a few weeks and that is ok.  When I wake up, my day is already "organized" and I am less likely to forget something or be stressing about something I waited to do last minute.  

This is also a relaxing method.  I write my to-do life list down in the early evenings so then I can relax for the rest of the day/night.  I dont stress about any items; if something pops up, I put it on the list and put it out of my head till tomorrow.  I leave the stress and anxiety of the day ahead on the paper.  

2. Eos Lip Balm

I know what you're thinking...how can a lip balm make my life easier?  Let me show you the ways...

First, they are adorable, unique and fun!  Using them is very posh.  

Second, they are extremely easy to find.  Chapsticks or lip glosses can so easily get lost in the bottom of a purse, fall out in the car, just disappear in its entirely for no reason.  However these balms are large enough in size (and what else do you put in your purse that is egg shaped?) that they can easily be sought out.  

Third, the balm gives an excellent glossy look without the "hair stuck on lips due to wind" dilemma.  

Fourth, they do an excellent job of moisturizing, meaning you have to use it less.  

3. Vaseline Spray and Go

Lotion has so many benefits in itself: it helps tans last longer, skin looking healthier, have to shave less.  So when Vaseline made a spray and go lotion, I was very excited to try it.  And it does not disappoint!  

 It goes on very easily, rubs in wonderfully and dries quickly so you can be on your way!  I have noticed that I do go through a bottle faster than I would a normal lotion bottle but for me the time saved is worth it.

4. Nail Time

I may go without make-up, I may go without doing my hair but I am never seen without my nails done.  Since before I could write, my Grandma Martin taught me to paint my nails.  And it has stuck these 20 plus years. 

Painting one's nails is very time consuming however.  I have gone all the routes in the salon: gel, acrillics, fancy manicure.  But they add up in $$ after a while.  

After much trail and error, I have found the perfect ingredient list for long lasting nail polish with no chips.  I can paint my nails personally and have the color last for a week or more (a true accomplishment!).

Here are my secrets:

-Nail bonder- the most needed first step.  This is what salons use (hence why salon manicures often last longer).  This is different from a base coat.  A base coat preps the nail by making a flat surface.  A bonder does exactly what it says: it helps to bind the color polish to the nail.  You can find a nail bonder either online or at a make-up store (Sallys, Ulta, etc).  It also dries very quick.

 (This is the best quality nail bonder I have ever used.  Highly suggest.)

-One to two coats of a nail polish.  It can be challenging for me to hold the nail brush at times.  I've found that the smaller, mini-sample bottles are perfect.  Plus, unless you use the same color weekly, a full bottle of nail polish will most likely expire before you use the whole bottle.  The little bottles are  cheaper and much more easier to use. 

-It is important to let the color nail polish completely dry before putting a top coat on; if not, this will lead to smudges.  I've used a personal UV light, fans, quick dry...but the most effective way I've found to help nails dry is after a few minutes to run them under cold water (or put them in a bowl of cold water).  This speeds up the drying process splendidly!

-Top Coat - instead of using an actual top coat, I use a nail strengthener.  It dries faster while still providing the shine and is good for the nail!  

-Every two-three days I do an extra coat of the nail strengthener.  This provides shine the whole manicure length.  Ive had many people ask if the color is gel/shellac; nope, its my nail strengthener.

5. Eyebrow razer

Whoever thought of these was genius!  Eyebrows are the death of me.  No matter how I get them done (wax, plucking, threading, etc), they start growing back immediately.  

These razors are so perfect for a quick re-boost of eyebrow power, allowing you to go longer in between eyebrow shaping days.  They also work great on peach fuzz. 

6. Neosporin

This is my secret weapon.  I have been fortunate enough to not have acne however no matter what my age, a pimple will pop up at the most inconvient time.  

I've tried almost every acne "on the spot" medicine and yet neosporin has the cure.  It makes sense, being that it helps with foreign objects in the skin (essentially what a pimple is).

 

I dab a little on top of the freshly clean skin and within a few hours, it's looking better.  I also use it as a preventive tool if I feel a pimple coming on or if there is an event approaching. 

This works great because I'm not a fan of the daily task of levels of make-up (primer, concealer, foundations, etc).  Im much more a powder, mascara and go type of girl.  This helps the process.

7. Hair Oil

When I first got sick, I used the time as an opportunity to re-vamp my hair's health; I used less heat, less products and more care.  And I'm very happy with where it has gotten me!

Happy, healthy hair means a lot of things: easier to manage, less time doing your hair, opportunity to let it air dry and go on with life.  Happy hair means happy life!

One of the most valuable things I have found on the road to happy hair is hair oil.  I've tried many different brands but this one is my favorite.  

It can go on wet or dry hair, great for the in-between shampoo days.  It also doesnt leave hair oily or heavy.  It is very light, refreshing and it smells wonderful!  

8. Organization

It can be challenging to go from chaos to organization.  However, I can guarantee that once you are there, it makes life so much easier.

Organization doesnt always mean spotless or spacious.  Organization means that things have a home and you can find that home when needed easily.  

 (it looks hectic but I know exactly where everything is. #prostatus)

Some tricks I've discovered to help with organization:

-Containers.  From shoe boxes to baskets, containers are a great way to organize items according to their "family" while also having them accessible and in many ways "cute".  I have all my medicine for example in one basket.  When I have to go someplace, I just pack the whole basket.  Easy!

-Closets.  It is so easy to just stuff things in the closet and forget about it.  Until you need that item.  Instead, organize your clothes by item (pants, shirts, dresses) - this helps in planning outfits too.  Do the same with shoes.  It may seem like more work to have to put things in their right order but eventually with time it will become second nature.

-Trash it.  Everything to me has value - money value, sentimental value, "Im going to need this someday" value.  My rule of thumb is if I havent used it in 1 year, then I probably wont be needing it in the next year.  This goes for everything: jewelry, make-up, products (granted, some expire shorter than a year), clothes, shoes, purses.  Some items can be donated or sold used; but others just need to be trashed.  

-Stick with it.  Once you have things organized, do your best to make sure it stays that way.  Granted, there will be days that nothing will be organized.  But it helps when you put yourself in the habit of hanging up your purse, putting the mail the mail bin, putting the book away, etc.  Practice makes perfect.

Organization truly is the mother of all tricks to making life easier.  It makes life more efficient, your time more effective and it has its cost advantages (its easier to not have to re-buy things when you can find them instantly).    

So there you have it...8 life tricks according to this MS sparkler.  Do you have an life tricks?  If so, share!  I'm all about the life is easy road!

Have a fabulous day!

Love, 

PS: My sister is getting married in just a few weeks!! Cant wait to share all the wonderful and beautiful things for the fabulous day, especially those created by my mom.

My job is to make sure the puppies are ready.  Sputnik is very excited about his new tux.  Can you blame him?  He looks so GQ.

 

Shoot - Im a Spoonie

Thank goodness for Urban Dictionary.  Otherwise I would have no idea what the cool kids were saying these days.

I came across the below picture the other day, which obviously I related to.

Except I had no idea what a Spoonie was.  Someone who liked to spoon?  

Wrong.  A spoonie is in fact a person living with a chronic illness.  

Spoonies are people that live with chronic illness; theoretically measuring personal daily abilities much as one would measure the proper amount of spoons needed for an event or occasion... sometimes having an abundance, other times coming up short.

Yep.  That's my life.  I am a full blown, 100%, no other definition needed, Spoonie.

Shoot.

I've had MS for 16 months now.  I'm by most standards doing much better than I was a year ago, 6 months ago, even 6 weeks ago.  I can drive, talk, walk with just 1 arm crutch and even wear a wedged heel.  

So why is that I find having a chronic illness harder to accept as each day passes by?

I was so sick for such a long time that I was distracted on being sick and how to get better.  Now that I am getting better, the emotions surrounding this realization of my life have to be met.  And explained.  And dealt with.  

It's daunting to me that I will be sick for the rest of my life.  Chronic.  Forever.  

Today at the pool I was watching a grandmother hold her grandson.  It's brutal to realize the reality of the fact I cant hold a baby.  My hands are not secure enough, there is too much of a risk.  Even if I could, how do I hold a baby and walk with my arm crutch and carry the diaper bag and bottles and stroller?  

How do you accept that?  Can you even?  Or do you just keep on moving on because life is too beautiful to stop and dwell on the hardships?

It takes a person with MS 10 times more energy to do a task, sometimes more.  (Side note: stay tuned to my Top 10 Items That Make Life Easier post).  Which means that even while "better", I can still only complete a low percentage of items that the every day person can achieve.  And there is nothing that will help this; its just the way life has become. 

I suppose that is how you learn to deal: acceptance.  I have to accept the fact that my life will be forever challenged.  I have to accept that I wont be able to do things the "normal" way.  I have to accept that I cannot compare my life to others because its impossible for me to even compete at that level.  

Acceptance is hard.  Especially when you are stubborn.  Or you dont like the path that now you have to accept.  

On top of that, there is a fine line between acceptance and giving up.  When do you accept and when do you stop fighting?  And though they are similar, acceptance can be in it's very essence the opposite of giving up.  By accepting that I have a chronic disease and am limited, I can then move on and live life to the fullest.  I can show MS who is boss and kick some butt. 

So while other fabulous women get to accept their destinies of motherhood, career professionals, high-heeled wearing nights on the town, I will be here accepting my destiny of being a Spoonie.  

At least I'm cool enough to be defined on Urban Dictionary.

To all the Spoonies!!

Love,

Team Sparkle Bike MS: City to Shore 2013

Yes its that time of year again...Team Sparkle Bike MS: City to Shore 2.0!!

While the participants of Team Sparkle start prepping their butts for the long bike ride, we are again looking to grow our team to VIP status with the help of YOU, the lovely donor sparkle supporters. 

Last year Team Sparkle raised over $12,000 through a lot of wonderful donors.  This provided Team Sparkle with the encouragement and hope needed to bike the 185 miles from Philadephia to Ocean City, NJ and back.  

The whole overall experience was, in a way, breathtaking.  For me personally, each $1 donated meant someone believed in my fight, in my hope.  It also was amazing to witness not only my loved ones but 1000s of strangers sacrificing a weekend to bike for my cause.  

For pictures from last year's ride, visit: https://www.facebook.com/media/set/?set=a.645920224980.2074072.144900133&type=1&l=68be5f339c

The money donated did more than give me hope; it went straight towards improving my quality of life.  A portion of the money raised through Bike MS rides throughout the country goes towards research and development, specifically to find medicines that help manage MS. 

Over the past year I have tried 2 MS management drugs, not responding to either category.  This was extremely discouraging for the next option was the Chemotherapy levels (obviously something to be avoided for as long as possible).  

But, with the help of the money from the MS Society - Bike MS, a new drug was approved called Tecfidera on March 21st (my 1 year MS anniversary...convenient).  This drug is oral (meaning no needle injections three times a week or monthly infusions!!) as well as very promising.  Im in my first month currently and hopefully in the next few months will know the affect it is having on managing my MS.

For those that donated last year, thank you!!  It may have only been $30 but that generous amount helped provide me with medical stability and hope, as well as kept me out of the chemo world.  

This year's ride is starting out even more special as Bike MS: City to Shore has asked me to be involved on a few different levels with regards to promotions.  

I was humbled to be a part of their postcard campaign (see below) as well as they asked me to provide a few words at their opening meeting, all around the theme of "Why we ride".  I've had the opportunity to get to know some of the members of their team and am honored to be volunteering along side them.  They are just fabulous!!

This year Team Sparkle's Goal is $5000 and our team members are Brian (my daddy), Connor (brother), Kevin and John (twin brothers), Tonya (my mom aka Captain Team Sparkle) and myself (yay!!!).  

There are three ways in which you can be a part of Team Sparkle:

1. Donate to Team Sparkle (visit here for more information: http://main.nationalmssociety.org/site/TR/Bike/PAEBikeEvents?team_id=349549&pg=team&fr_id=20331)

2. Promote Team Sparkle (create awareness by sharing Team Sparkle's information and donate page)

3. Join Team Sparkle in riding the race yourself!!  There are a few different routes to choose from and we would love to have additions to our team!! (visit the donate page for more information: http://main.nationalmssociety.org/site/TR/Bike/PAEBikeEvents?team_id=349549&pg=team&fr_id=20331)

Anyway you choose to be a part of Team Sparkle is greatly appreciated!!  I look forward to seeing the rewards from this campaign and sharing the updates with you!

Love and thankful,

 

The Sparkle Life Takes a Vacay

It goes without saying the past few months have been a little chaotic / intense.  

So to compensate for the lack of relaxation and entertainment, I packed my bags and headed East for a vacation.  

I also took a little break from writing; sometimes you just need a rest.  That and it's a little difficult to type.  Perhaps Physical Therapy for my phalanges in the future (I love that word).

My trip started with a few days in Philadelphia visiting my best friend Regina.  We did what we do best; that is, sitting on the couch in our matching pj's, watching tv and looking up random facts online.  

Yes, we really are that cool.  

One of the days while Reg was off being an adult and went to work, I headed to the coast to visit Ocean City.  It was extremely hot (with humidity levels a feel like temp of 115) but it was fun.  

I pulled extreme shoobieness (a shoobie is one who does not follow proper beach etiquette) and walked the boardwalk with a huge golf umbrella to protect myself from the sun.  People already stare due to the third metal leg that I decided it couldnt do much more damage.  

After a few days in Philly/NJ, I headed south back to the area of DC/NOVA.  I spent the first night going to a baseball game with my old company 3Pillar Global.  (Have I mentioned how great they are to me?  Check out their website). 

That was probably the hottest I've been all year; put 1000s of people together in a stadium with no breeze in 100 degree weather and watch what happens.  Sweat, smelly, sticky people everywhere.  It was very nice though; Im fortunate to have worked with some amazing people who I can call my friends. 

Saturday I spent with an old friend from my campaign days.  We lunched at a fabulous place in Old Town Alexandria, one of my favorite places in the area.  After 3 and a half hours of chatting and catching up on life I realized that there are just some people that God designed to have in your life.  She is definitely one of them.

Sunday I pulled a fabulous prank on my friend Kimberly.  Neither one of us had told the other that we were going to be in DC that weekend however I saw on her facebook that she was indeed in town.  So I had this great idea to call three times and leave a brief message of "Please call me" while sounding distraught.  She called back very concerned, to which I carried out the distraughtness, asking her where she was.  When she replied DC it was a great opportunity to change attitude to happiness and "guess what....me too!!!!".  

I realized after that I probably shouldnt pull these type of pranks on people.  She was concerned that I was given a few more months to live or that I was back in the hospital.  Whoops.  (:

Monday I lunched with some co-workers and past co-workers.  I then spent the afternoon in the office, sitting in on a business meeting.  It was fun to see some of the old clients I had worked with as well as some of the processes I helped put in place still around.  It was also enjoyable to see how far the company has come in the past year and few months.  

Being in the NOVA area was a little challenging at times.  That's where I was when all hell broke loose on my life.  That's where I was building a professional future.  That's where I had independence.  

In reality however, who I have become today wouldnt handle NOVA very well.  The overcrowded population, the lack of available parking, the unfriendliness of people on the street...these are all things that arent very sought out for in my life.  

There are moments in days where I really and truly dislike Multiple Sclerosis, the fact that I have it, the fact that I have an aggressive case, the fact that I have Parkinsonism, the fact that Im disabled (there's a lot to dislike currently). 

Overall though I am thankful.  I am thankful that I have the opportunity to have a slower paced life, to live in a city where you can get from one side to the other in less than 30 minutes.  To have established friendships that dont need hyped up outings to be considered fun; a Starbucks coffee date will do.  To have a new perspective on life and how to live it, to not take a moment for granted for you never know what tomorrow will bring or take.  

Its challenging to have this thought process I wont deny.  And though I had a nice vacation, the stress that it took on my body is significant.  It would be easier to not take vacations or leave the house or keep my head it. 

But then I'd have no adventures to write about. 

Love,

PS:  Please take the time and enjoy watching my audition video for The Voice.  I think I have great potential.

Found here : The Voice Audition Take 1

To my Fellow MS Sparklers

When first diagnosed with MS, I stayed away from google and the like.  I gathered information from my doctors and the National MS Society and left the rest at the door (the rest being blogs, forums, information Q&A's).

Part of this withdrawal from the MS community began with a bad experience at a MS event.  I was recently diagnosed, was recently home from the hospital and was recently invited to a "Newly Diagnosed MS Support Group".  I went with high expectations for the event (another expectation ruined the day moment) and left with distaste and misfortune. 

I was the youngest person there, the only one with a then so sexy walker.  Most of the other MS patients had been diagnosed for a year plus.  Some people there didnt even have MS, some people there to complain.  Most everyone there spoke about how MS had completely changed their life.  All of this combined scared me right out the door and into a "keep my MS to myself" hole.

I was naive.  I was of the hopeful thinking that MS was not going to change my life, that I would return to DC, return to my job, return to my life.  I wasnt going to need the lawyers advice on how to apply for disability (this lawyer later turned out to be a great asset when I realized I did), I wasnt going to go to support groups for MS and I didnt see the need to work to create MS awareness.  

So completely naive.  Or was it hopeful?  It could be argued both.

Then I had my second relapse.  And everything changed.  I felt so alone in my MS journey.  One night I searched "multiple sclerosis" through my tumblr account.  Reading the stories, the journeys of other MS patients, was at first scary for it wasnt pretty; but eventually it made me feel less alone, encouraged in my own journey and wanting to share my story to create a more friendly MS awareness world.  

And here we are.  The Sparkled Life was born and I've had the chance to learn of so many other MS Sparklers' stories, all leaving me with a warm feeling in my heart.  Though every case of MS is different, the fact that there is someone out there that is walking this journey as well is encouraging.  I wouldnt wish MS or chronic illness on any person.  But for those who have been gifted the hard blessing, I'm glad we have the means to be in it together.

A few nights ago I took to Instagram for some answers to a few MS specific questions I had and the response was uplifting and helpful.  I thought today, why not try the same here?

Below are a few questions that I've come across myself; if you have MS, know someone who does or just want to give some input, all is greatly appreciated!  Feel free to either leave a comment or email me at thesparkledlifegirl@gmail.com.  

If you are currently struggling with MS and just want someone to complain to, the offer is the same.  Its a rough path; no one should have to do it alone.  There is a strong MS family and community.  We're like a rose bush: we have thorns and pointy parts but in the long run, we are a beautiful community of flowers (hows that for corny?).  

But for real, you are not alone.  You are a fighter, you are strong, you've got this.  There is hope, there is love.

Love,

Questions for MS Sparklers Part 1:

1. Tecfidera - On it?  Tried it?  Like it?  Thoughts about it?  Experience symptoms/side effects?
2. Fatigue and Insomnia - Fatigued by the day, insomnia by the nights.  How to switch it?  Suggestions / words of wisdom?
3. Celiac Disease and Gluten Intolerance - have you seen a correlation?  
4. Migraines / Headaches - Do you get them?  Ways to prevent besides pain relievers?
5. Have you ever felt pain in a place where you have a lesion (such as along your neck/C-spine)?
6. How do you explain to friends/family about the inconsistency with MS (such as yesterday was good, but today I have to cancel for it's bad)?
7. Any blogs / sites that you would recommend that have been helpful and/or encouraging to you in your MS journey?
8. What is one area of research with regards to MS that you would like more effort being put into; such as new exacerbation treatment therapies (ie steroids, plasma exchange, IVIG), new MS management drugs (Rebif, Tecfidera, Tysabri), new symptom medications (klonopin, gabapentin), new symptom treatments (physical therapy, acupuncture, massage), new answers as to the "whys" (why have MS, why have relapses, etc)?

When All Else Fails, We Nap

I feel like my life the past 20 months has been a run-down of the song "Cotton-Eyed Joe"

Where did you come from, where did you go? ....over and over and over again.

Where did this new life come from?  Where did my old life go? Oh damn you Cotton-Eyed Joe.

Now that I'm back alive and in the world again I've come to remember a few things forgotten in months past:

1. People stare at the third leg or the wheelchair.  Most likely they think or assume it was an accident.  Little do they know the invisible marks of this awful disease.

2. MS does not like heat. 

3. Shopping is so much harder than it should be.

4. I really love cycling. 

5. The over-bearing question: What am I going to do with my life?

Ever since I was 15 I had a strong mind and will on what I was going to be when I grew up.  From first woman President to owning my own Higher Education Consulting company to being on the front end of technology, I had lived various careers lives but they all had the same thread in common: determination and fortunately, success.  

For 10 years I worked hard in life.  I met a lot of people, experienced the best things, made the best relationships, learned from the hardest mistakes, had a vibrant career with an expandable income, lived in various apartments and houses-making each a home.  

I no longer made answers to the question "What do I want to be when I grow up?" because I was, in some ways, grown up and loved the life I was living.  I knew the qualities I wanted for the future and could see the paths to them lining up perfectly.

Then like a perfect storm, it all vanished.  

The hard thing is, I still want those same qualities for my future: the successful career, the homestyle country house with wrap around porch, the 5 series BMW, a kid or two, the husband who plans trips and vacations and outdoor concert festivals. 

The thing is, those paths that were lining up so perfectly arent so perfect any more.  Im left with myself having to seriously answer the question "What are you going to be when you grow up?".  And the harder one, "How are you going to get there?"

What am I going to do with my life?  There are so many paths I could take, that are available and I am thankful I can still see that, even in a disgruntle state.  

The problem is (and this is where the princess in me comes out), they are hard paths.  Well goodness, life is hard, so much harder for me, now.  Everything comes at a higher price, at a higher token.  

This thought process, of answering the question, determining what path to take, realizing the price that will have to be paid is daunting.  Overwhelming.  

So much that, as the title suggests, I end up taking the route that is so not grown-up like: I nap.  (Naps fix everything).

Fortunately right now I dont have to answer that question with specifics.  I can coast on the line of still recovering (heck its only been two weeks since I was in rehab).  I can take the time to heal, to vacation, to recoup.  But eventually I will have to "grow-up".  And I hope that the higher price paid equals beautiful return.

With all this said, a friend brought to my attention a wonderful article that put life into a great perspective for me, thus the love to share.  

5 Unique Ways to Forgive and Let Go: http://www.marcandangel.com/2013/07/07/5-unique-ways-to-forgive-and-let-go/  (really its a 5 step how to live life more awesomely...worth the few minutes to read!!)

Step 1 hit it right on the head:

There is great value within you right here, right now.  Allow it to come out, willingly and without a struggle.  Instead of trying to get to some other point in your life, give your full attention to doing your very best with the life you are living now.  Instead of believing that you are not there yet, be grateful that you are right where you are meant to be at this moment.

Amen!!

Love and happy napping,  

 PS: Say a little prayer for the youngest of my brothers John who fell at Summer Camp and had to get some stitches.  Last summer boiling water spelt on his foot at the same Summer Camp.  He spent the past few weeks talking about how excited he was to make up for last summer's losses with his twin Kevin.  Fortunately, twins are great for times like these and they will finish out the week together.  Gotta love them (and miss them...its only been two days!).

I Believe in Miracles

I like things in life that can be accounted for, explained.  I like when there is a pattern to how things work and why things dont.

Which is why you can imagine having MS in the first place drives me bonkers just on the basis of not having any answers as to how, why, when, etc.

And that is what the past 4 months have consisted of.  Dead ends and no answers.

I know I expressed that I was "sick" but looking back in hinesight as well as hearing from what others have told me, I might not have realized or have shared how sick I actually was.  

There were days that I thought I was dying.  There were days that I looked like death, eyes glazed over, gray skin (lets not even talk about my gray hairs).  My sparkle had been lost, my energy gone, my zeal for overcoming obstacles with stubbornness went right out the window.  I wasnt giving up; my body was literally shutting down.

At first it was thought that this all could be tied to my anti-body response to the Tysabri infusions.  But after a dose of steroid injections and a round of plasma exchanges, while relief was found for a few days, I just kept tumbling downward.  

There was a really bad night the end of May.  I had gone to a Dave Matthews Band concert with my friend and had a great time; I was feeling good, smiley, happy.  Then I came home and like hitting a brick wall, I lost it.  It was probably the worst night of my life.  I was afraid to sleep yet could do nothing except lay there, fighting my body to keep my eyes open.  Mom and Dad took turns checking on me every hour and I think this was the night I dramatically proclaimed I was dying.  

Yes, I am known to be Miss Drama Queen at times but in all seriousness, I really did feel it.

Cleveland Clinic came and went with no further answers or assistance.  Each day was a struggle to find something, anything, that could offer relief.  

In between the week at Cleveland and before going to rehab I remember lying on my floor, begging God and everyone in Heaven for help.  It wasnt my first cry (I pray daily for help; I wouldnt be able to live The Sparkled Life without some Divine help) but it was desperate.  

I was calling on everyone, every single person I could think of by name in Heaven: family members, friends, celebrities (Heath Ledger included), historians, past Presidents and artists, Saints, all of them.  Asking them that unless they were preparing a welcome party for me that they send some heavenly help.  Please 

And this is where I get to insert a thank you to all those that prayed with me on this earth, because I know I wasnt the only one desperately praying.   

Thank you so much, for your support and hope in your prayers.

At the end of the day, God decided to answer in the way asked and sent a little miracle.  Ok, a BIG miracle. #lesbihonest (sorry had to...it just fit.  #ifyou'veseenPitchPerfectyouundeerstand)

So I was in rehab and was hit with one of my disabling migraines.  They come on so quick and so fast and are so annoying and so inconsiderate.  I was lying in my hospital bed, ice on my head, my body trembling with what we thought was spasticity.  

The doctors had put me on the most powerful drug for spasticity, with no change.  Thinking outside the box, the attending doctor thought that perhaps this wasnt MS, that maybe this was something on top of the MS; and proceeded to call a brain doctor to evaluate.  

Brain doctor came, examined, ordered a MRI (just the cure for a headache!) and then provided his thoughts: that this indeed was not spasticity but rather tremors, tremors resembling those of Parkinson's.  

What?

Excuse me, Im only 26.  Can you run that by me again? 

MRI was run and showed no MS progress (a good sign for the MS in me) which furthered the theory that this wasnt MS related.  Let's give Parkinson a try.

I was prescribed a Parkinson medicine and guess what?  Within two weeks my tremors are controlled; I'm functioning again.  Im walking again.  Im talking again.  Im eating again.  Im myself again.

Im sparkling again.

Sputnik was so excited to have his mom back for fun!

This is the miracle.  

Yes, you could argue that it was just a series of fortunate events, of the doctor thinking outside the box, the bringing in of the a brain doctor, deciding to pursue a drug usually reserved for those older than 60...that worked.  

But with my luck and with my history, I cannot deny the fact that there was some divine intervention at some point within those fortunate events.  It all was a stream of miracles.

So does this mean I have Parkinson's Disease? No.  I have Parkinsonism, which contains the symptoms of Parkinson's.  It can be caused by a number of things but the two that are considered for me are: 1, a build up of toxins in my system or 2, a lesion in the brain close to where Parkinson's develops.  

Just in case it's number 1, I'm taking specific steps to detox my body of all these ridiculous medicines I have been on.  Even if this doesn't take away the tremors, it will at least be good to know all these toxins are gone!

How do I feel about having Parkinsonism and Multiple Sclerosis?  Not entirely happy about it.  However, I am EXTREMELY happy to not be where I was before.  It was always in the back of our minds, the past few months, that maybe this wasnt MS.  That maybe it was something else aggravating it, causing additional symptoms.  And that theory was right.  So in the end, if I only have to take a pill to help maintain my current status, then I can definitely live with it. 

At the end of the day, I have to believe in miracles.  Yes, I like answers to every question and I like to know how and why things work or dont.  But sometimes you dont get the luxury of answers.  Sometimes you have to take it on faith.  Believe that, well, "everything's gonna be alright".  

And, trust in the miracles.

Love and THANK YOU to my miracle Provider and those who helped along the way,

PS: It wouldnt be a week back on my feet without a visit to our favorite burger shop, Burgatory, with my bestie who came back for the week.

Home / Rehab 2013

So Rehab 2013 was short lived (that is, if you can call 10 days in the hospital short lived).

The view from the hospital.  This was one of my reading spots.

Im very glad to be home and recovery is on the rise (hospital recovery that is; "they" say for every day in the hospital it takes 2 to recover.  My recovery period is usually half or less than that so here's hoping).

The original time frame for my stay was 2-3 weeks, possibly more.  However, as the days went by, things werent matching up.

My spasticity was actually not that; rather, diagnosis was uncontrolled tremors due to some neurological malfunction.  What this meant was that physical therapy, occupational therapy, speech therapy, etc, could do all they could but until the doctors found a medicine to stop my tremors, their / my hard work would go unnoticed.  

 My half of the hospital room.  Tiny, tiny, tiny.

So in the end what started out as a hopeful journey of therapy to learn how to re-do life, as done last summer, was shattered as it became more and more relevant that I was there for medicine monitoring.  

It was my decision to then ask the team of doctors and therapists "How about we do this outpatient and I go home?" and all agreed.  There was nothing besides repetition that could be done and an autoimmune patient isnt best to be found in the hospital.  

So, here we are, another wall.

Im not ready to share the details of the thoughts of the diagnosis because, well, 1, it's not confirmed, and comes with many questions, and 2, sounds ridiculous and I am hoping for a different answer.  Hopefully I will have a better idea in a week.

In the meantime, I am home and thankful.  I have some sparkle searching I need to do as I seem to have lost some in the past few months.  Hope finding as well. 

Im tired.

 The best feeling.

We'll get there eventually.

Much love,  

PS: If you're in the mood for some beautiful music, check out this wonderful rendition of Just Breathe by Willie Nelson and son Lucas (and yes, he sounds just like his dad).  This was my favorite part of Farm Aid last year, so beautiful.

http://www.youtube.com/watch?v=mjbLDt1tvz4

Familiar

It's like it was just a year ago I was here.  

Hospital bed, typing on my iPad, rehab schedule. 

(Love my gma blanket? Perfect accessory I know)

Oh wait, I was. (:

Yes, I'm back at Mercy Rehab for hopefully a short while. They were very excellent last time with helping me "get back on my feet" and were hopeful for the same this time around. Just a shorter visit. 

I'm not entirely enthused to be back.  But it feels very familiar as everyone seems to remember me (a good or bad thing verdict still out) and I annoy the food crew with my very specific meal arrangements. I'm sharing a room this time and am facing the front side so get to do a lot of people watching instead of water gazing. Should be fun. 

Mercy has this great program where you can send little love notes to patients and it greatly made my days last time. If you'd like to send a little note of encouragement, visit https://ecards.upmc.com/getwell.asp Room 7005-2. 

Much love! Eliz