Insomnia vs. Fatigue

I used to be the perfect sleeper. 

I used to have a perfect sleep schedule, I slept through nights perfectly like a rock, and woke up in the mornings prepared for the day.

I used to.

With multiple sclerosis, there is no such thing as perfect sleep.  There is however fatigue and insomnia.

Which baffles my mind that these two go hand in hand; because if your body is so overly tired, wouldnt it be so excited to hit the pillow at night time?

Some nights most definitely.  Some others, not so much.

Insomnia isnt just not being able to fall asleep.  It's literally like your head and body become super heros and want to save the world; they just keep running and running and running.  And then you get stressed because you know you need sleep which only hinders the sleep route. 

It's a bitch I tell ya.

So as you can see by this 5am time stamp, I have yet to have fallen asleep.  Im sure this will be just lovely tomorrow as I struggle to my next plasma exchange. 

There are ways to battle insomnia: melatonin, yoga, meditation, breathing exercises, thinking about boring things.  But sometimes, the battle just cant be won. 

My insomnia nights are usually the nights where I come up with my great big ideas.  Of how I'm going to create MS awareness till we #findacurealready, on fashion designs, on book and blog posts.  I jot it down in an effort to make it my next day's achievements.  

And then I wake up fatigued as all get out and dont accomplish a thing.

In a round about way, this is the cycle of life.  It has also been a theme of many recent conversations I have had.

That being, we set out with these great ideas and accomplishments, pumped and ready for the day to start. 

And then when it does, we get knocked down, hindered, and those dreams become so far out of reach.

But the great thing about dreams is that they (usually) dont have a time table.  So you were plagued with insomnia and then fatigue ruined life.  For a day or two.  That's the key.

Stick with it.  Keep those dreams on paper.  Because one day you will get a normal night's sleep and wake up ready to achieve the thought that was once deemed impossible.

So did any of that make sense? *sigh* It does for now. (:

Much love to you sparklers,

That One Time I Started Walking Again

Something magical happened recently in The Sparkled Life. 

I started walking again.  Like legit walking.  Without trusty arm crutch Edward.  (cue celebrations!!!)

This is a huge deal being that my first symptom that led to my diagnosis with multiple sclerosis in 2012 was my inability to walk correctly.  Add to it that last year I was in my wheelchair...literally, this is huge. 

Technically I dont walk "correctly".  I walk a new walk that includes thinking really hard and gaging things properly since I cant feel my feet at all or my legs half the time.  Yet still, it's walking.

Easter Sunday I even walked the church parking lot in two inch platform shoes.  And I thought I'd never.

Learning to walk again wasnt just a decision I made lightly.  Walking with the arm crutch had become exactly that: a crutch.  People looked at me and they could see something was wrong with me.  I parked in handicapped parking and it was ok because I had the crutch.  I would stumble but catch myself before I fell because of, yes, the crutch. 

Now, if you look really close, I sometimes look like a drunk person walking.  I park in handicapped because I still cant walk very far, and I see the judgement stares.  And the worst part, if I miss a step and fall, there is nothing to catch me anymore. 

Yes, this is a huge achievement for me.  It's also a dangerous and hard one.  

I dont let that stop me though.  I even take it steps forward and GO for walks (legit two mile ones).  I push myself.  

Why? 

Yes, part of it is to show the people who said I would never walk again that they had no idea who they were talking to. 

Part of it is because I want to feel normal again.

Mostly though, it's because I want to show the world that I'm sick, I'm in pain, I'm held together by a weird drug, I wake up hurting and go to be hurting, I'm unsure of the quality of my future, etc. etc.  I have the best excuse in the book of excuses to stay in bed and watch netflix while eating goldfish all day.

And you know what kid?  I woke up today and freaking (excuse my language) walked.  

Now go get your sneakers and start walking with me.  

(:

Not everything you put your mind to you can achieve (this is real life).  But if you work hard, pray hard, and dont give up, you might just land yourself darn close to that dream.

To walking!!

Love,

A Year with MS

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

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

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

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

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

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

1. To communicate to the masses my health updates.

2. Therapeutic.

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

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

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

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

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

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

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

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

 

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

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

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

 

Hope

This word has been the banner of my MS story, the word behind the sparkle life. 

But what exactly are we, I, hoping in at this point?  

I receive emails daily filled with news of promising drugs on the horizon.  Stem cell research is becoming something more tangible daily.  

But the realist in me see's the whole picture: I see Obamacare and the hiccups it will cause in research and development in the medical field.  I see the longated process that these drugs must endure due to money focused insurance and drug agencies.  I see theories and ideas yet no promises or cures.  

Most importantly, I see my body rejecting medications and procedures that are currently the promises of hope that are on the market today.  

Yes, it's happened again; the third ms management drug I have tried in 18 months, Tecfidera, has been rejected.  I'm now moving to my fourth drug, Copaxone.  It is seen as the "weakest" ms management drug, the reason we have not tried it as of yet.  However, before taking more extreme measures, we are giving it a shot with a MRI scheduled in January to see if any progress. 

(Oh and the most fabulous news about this is that Im moving from an oral drug to a daily injection.  Now I didnt really like Tecfidera and I dont mind needles.  It's just a mind over matter situation I have to work through). 

The most frustrating thing is that I am encouraged to hope in the future of medicine for the help in controlling my disease or even more promising, a cure.  Yet I have no signs so far that even if these things were to arise that I would be able to respond.  

The drugs that do work, the drugs that allow me to "look so good" and have an actual quality of life are parkinson's drugs.  And my day to day life is held together by these drugs.  Yes, I may be getting stronger but goodness be if I forget a dose.  

And though these drugs bring me support throughout the day, they do not heal, they do not stop the pain.  It pains me to do anything human: to bath, the brush my teeth, to eat...even typing this is a challenge as my hands struggle to remember the keys that I have graced 1000's of times.  

This leads me to question: where does my hope lie?  What can I hope in that will allow me the grace, courage and strength to continue living with MS?

The easy answer: God.  People say that God does not give you more than you can handle but I dont believe this.  I believe God sometimes gives you more than you can handle so that you are reminded how much you need to dive into your spiritual side.  How much you need that spiritual support.  I hope in my faith, in the afterlife. 

I hope in love.  I hope in the love of my family, my friends.  That through my experience I can learn to cultivate deeper our relationships and learn from their support. 

I hope in myself.  I hope that I am strong enough to continue smiling and sparkling despite the let downs, the discouragements, the pain, the tears. 

I hope in the MS movement.  The drugs and procedures may not work for me yet they will work for 1000s of others.  And if I can be a voice on their behalf, well how beautiful is that?

I hope in the sparkle.  I cant really explain what the sparkle is.  It varies from the perfect cup of coffee on a bitter day to a postcard in the mail to a smile through the tears.  Sparkle isnt just glitter on a paper.  It's a way of life for me.  And I hope in it.  Because it makes me happy.  

And I have come to find that happiness is one of the best drugs there is.  

Hope isnt easy.  In fact, I would say to hope is one of the hardest callings a human is called to.  For it is a surroundering; the understanding that right now totally sucks and there isnt much that can be done except hope in things that we possibly cannot control that it will get better.  

Hope isnt a promise.  It doesnt guarantee.  It can disappoint.  

Hope is believing that life is too beautiful to believe that today's hardships outweight tomorrow's beauty.  

Hope is the reason.

And together lets never let go of that hope. 

Love,

 

"We must accept finite disappointment, but never lose infinite hope." - Martin Luther King, Jr. 

Home

 When I began this blog many months ago, I did not expect it to become what it has blossomed to be. 

I started writing on a tumblr out of efficiency, to help keep those connected to me up to date with my overall status.  An open letter of sharing my sparkle to the many people who loved, cared and supported me. 

I did not expect it to grow into what it has today: a tool connecting me to once strangers now friends.  A way to share my story in hope for an awareness to a disease that does not have much.  A site which gains 100's of views daily.  (So humbled and thankful to everyone who reads and supports my story!)

There has been a drag of posts lately and mostly this is due to my overall re-evaluation of my life with MS.  As stated before, I was spending my days fighting MS.  Searching in circles for answers that are not there.

When one day I decided to stop fighting and rather accept.  Accept that I now have a friend named MS and it is here to stay.  

During this time I thought long and hard about the future of TSL blog.  Do I continue writing?  Do I keep posting my interpersonal stories of my journey through life with MS?  Do I just leave a goodbye letter and leave the past posts available for research?  Or do I end it all together?

It was then that I started to receive letters, from friends and strangers, of support.  Of how my story was impacting their lives.  And through these letters, their stories started to impact my own, again.  

The Sparkled Life is my story yes.  But it is also the story of a person who's life was turned upside down.  This can be a story anyone relates to, it can be the face of millions of people.  Everyone has trails; everyone has suffering.  We all have a story that can relate to pain. 

I've accepted that I have MS but I'm not going to accept that my life is doomed because of the MS.  Im going to embrace it and thus embrace life.  

Yes, I am limited.  Yes, I am weak.  No, this does not mean life is any easier.  

What it does mean is that despite everything, life is still beautiful.  And I'm going to make sure that the beauty that I am able to experience, even with my MS, is a vision of hope.  Which is why at the end of the day I will continue sparkling as a blogger.  

I'm good at sparkling.  My mom says I should claim it as my full time job.  Nice life right? (;

So yay.  I'm back.  I'm home, physically (as in I just got back from a 3 week vacation...more on that later) and as TSL blogger.  

Pellegrino to celebrate anyone? 

Love,

HOPE

When all else fails, hold on to hope.

And buy really pretty flowers.

#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)?