The Sparkled Life

a grandma at 25

“An old soul” is what I have been told I have been gifted with. “Grandma” was my nickname from many of my friends.

According to a very reliable source (cough urban dictionary), an old soul is:

A spiritual person whom is wise beyond their years; people of strong emotional stability. Basically, someone whom has more understanding of the world around them.

Well lately, I have been feeling more physically like an old soul.

Today I made a visit to the urgent care after the advice of my neurologist due to a pain I was feeling in my abdomen and a rash I was developing.

“It might be shingles.“ Though shingles is usually reserved for the age group of 60 and over, those with autoimmune disorders also have a high chance of contracting the situation.

So I took the advice and went. But made sure to match fashionably of course. (:

Oh the little things in life.

Anyway.

While shingles cant be diagnosed specifically through a blood test or urine sample, my symptoms and situation led the doctor to take the route of diagnosing it as shingles.

What is shingles?

Well, from my unmedically (yes I made that word up) uneducated opinion, shingles is a re-awakening of chicken pox. After one has chicken pox, the virus lays dormant in the nervous system. When the immune system is compromised (combine MS with a cold two weeks ago), it can create this dormant to re-awake, creating shingles. While chicken pox is mostly just itchy, shingles is painful. Yay!

And for those wondering, it is not contagious.

Fortunately, we caught it early. With the help of some anti-viral meds, we can hopefully kick it and lessen the pain.

(Side note to all those with auto-immune diseases, make sure to take care of yourself! Try not to get sick and if you do, take the day off and rest and get it out of your system. PS: Youre an awesome sparkler too!!)

It is hard though. This is the longest Ive gone without some type of episode. And though this is “minor”, as in I just have to rest a lot, drink fluids, take my meds, etc, it only adds to the stress level of having all these issues.

Ill be honest. I lost it for a moment today. Why cant I just catch a break? Why does it have to be another thing? Why do I have to fit in the 60 and over age group? Do I now get senior discounts?

So I cried, let that weakness out, did an anti-stress facial, took a shower, watched the opening football game, and realized something.

No matter what road you take, or choices you make, shit is going to happen. (Sorry for the language). Yes, some people have it easier than others. I cant answer as to why that may be.

But what I can answer to is that while shit may happen, its up to you to determine if youre going to sit in it or if youre going to flush.

It may seem impossible, it still may be hard. It might not go away. “it” being whatever is pain for you in your life.

With that said, never underestimate the power of HOPE. Believing in hope will not fix your problems, it will give you the strength to endure them.

Hope in yourself. Hope in your faith. Hope in your friends, your family, your loved ones. Hope in the power of positive thinking.

Yes, I may be 25. And I may be physically becoming an old soul before Id like to.

But hell, I look damn good for an old soul if I dont say so myself.

And when you all turn 60, I’ll be the really old soul who can share all that I’ve learned. (:

Never underestimate the power of hope.

Love, Eliz

stepping stones of disappointments

Lately I have felt as if Multiple Sclerosis has taken me on a course of stepping stones of disappointments.

By now I can admit that some of these symptoms of MS are here to stay. The balance and coordination, the fatigue, the “nerve dancing” and unfortunately, the speech disruption. I will learn to live with them and hopefully maybe even improve them further.

Whats harder to admit is that MS doesnt really want me to return to life as I knew it.

I still am the sparkling me.

I just do not get to do the things that sparkling me loves to do.

Because of a disease that I did nothing to bring on, no cause to be known, with no cure to be given. Damn you MS.

My summer:

June = hospital stay and rehab due to a second attack

July = quick hospital stay due to pseudo-exacerbation and then I really dont remember the rest of July

August = fatigue. fatigue. some quick lunches. fatigue.

To be 25 and to have spent my summer this way is, in my opinion, unfair.

To be 25 and to have received an invite to “The Women’s Professional Organization”, only to explain that I am currently going through the process of long term disability, is unfair.

To be 25 and to have your days filled with medicine alarms and timing of vitamins and needle injections and appointments, is unfair.

To be 25 and to get a cold means being bed-ridden for most of a week, is unfair.

To be 25 and to wonder if you will ever hear the sound of your own voice again, is unfair.

To be 25 and to have to sell all of your beloved heeled shoes that you spent many hard earned dollars on, is unfair.

To be 25 and to be become disabled overnight, is unfair.

Unfair.

But life is not fair.

If life were fair that would mean everyone would have a room painted pink with zebra accents and lots of plants and flowers (aka my bedroom). But luckily its not, which makes it special.

By life being unfair, it makes us all special. Because it makes us all have our own struggles to have to live. And our own opportunity to sparkle, in our own way, to get through them.

MS has made my life very unfair.

But it also has given me an even greater opportunity to sparkle. And to share that sparkle.

So while I shed a tear writing this post in sorrow of all that has been taken away, I end with a sense of gratitude.

(I dont know where I find the strength for that gratitude, to be honest. hah.

I have an idea it comes from the support of you and the others).

But gratitude for this goodness awful disease to allow me to stop and appreciate…

the sparkle.

love from the deepest of my heart, eliz

but you look so good!

I was warned when first diagnosed with MS that this saying “but you look so good!” would eventually become the most annoying.

Though said with good intentions, what it becomes interpreted as is “you dont look sick.”

No, I dont. I look the same as I did before. And I can even still look “really damn good”, it just takes me about 3 hours and instead of blow drying my hair I sit in front of my big box fan while I do my make-up. True story.

But inside, my immune system is eating away at my nervous system. Looks are deceiving: I am sick.

I have been at a lost for words with regards to what to write lately.

Its a constant battle between:

What I want to say: “I feel sick 24/7. I am very sad that I cant be the same Eliz I was 6 months ago. I get extremely frustrated that Ive lost my voice and my ability to walk without support. I hate not knowing what the future will bring. I would never have guessed I would be living a life disabled. I wish I could go outside without an ice pack. I hate MS.”

What I know I need to say: “I have the support of 1000s helping me get through this journey. This is my life now and my focus should be on how to live with it. It could be worse. Happiness and time treats all hurts. Positive thinking is the only way to move forward. God wouldnt give me a mountain if I couldnt climb it.”

So there you have it. The truth of how I feel and the facts around how I should handle it.

Over the past few years I got to thinking how awesome it would be to have a job as a life coach.

Little did I realize my first client would be myself.

But hey, at least I look good. (:

Love, Eliz

a good day

today is a good day because it is the birthday of my little sister Courtney.

She spent it climbing 3 14ers before 9am. nbd.

(PS:look at her shirt. Shes a supporter. Thanks girl!!!)

I also was able to get together for lunch with two old and good friends, one who recently moved across country and one who has recently had a baby. I couldnt help but think how life’s roads are so crazy in life and you just never know where yours will end up. We had a great time catching up.

(he slept through the whole lunch except for basically this picture and the bottle :D)

I also, after all my years of loving Starbucks, have finally made it to Gold level. Officially.

A special thank you goes out to all my dear friends and grandma that have sent the starbucks giftcards that got me to this special level. (:

On the subject of Starbucks (its popular here I realized), I passed today the starbucks that I stopped at daily during my hour commute ride while living in Pittsburgh two years ago as well as visited many times while in college.

For whatever reason, this made me tear up a little bit, seeing this Starbucks.

Remembering all the times I had stopped there (It had to have been over 300 stops over the course of 5 years).

And remembering the memories around those times.

And realizing that my life will never be the same.

I told myself the other day that I wouldnt waste anytime letting my feelings towards MS and how it has affected my life change the way I live.

Because life is too great to live otherwise.

And though they say it’s possible
To me, I don’t see how it’s probable
I see the course I’m on spinning farther from what I know
But I’ll hold on

HOPE

Love, Eliz

fatigue….

Fatigue, being a very common symptom of MS, has landed.

This past year I noticed a major decrease in my energy levels. Then once March hit it made sense that it was due to my immune system eating away at my nervous system.

But the fatigue level hadnt really set this low until this past week.

Perhaps its due to the fact that this is the longest since being diagnosed I havent been in a hospital (fingers crossed no more for a while!!!). And that the adrenalin level of hospitalness has just decreased.

Or it could be that my body is rebuilding and healing!! Positive thinking!

Whatever it is, I have had a very sleepy week. Hence, so has Sputnik (my puppy…isnt he adorable?).

Its been challenging, and I have expressed this prior, to go from a life of “I’ll sleep when Im dead…let’s go!” to “If I dont sleep I’ll be dead”. Dramatic maybe but challenging none the less.

Doesnt MS know its really hard to sparkle when youre in bed all day?

For just a little motivation:

Oscar Pistorious, the first double-amputee to compete in the Olympic games ever, might not have advanced to the finals, but hes won my heart. And given me another reason to hope.

No calves? No problem. Olympics, bring it.

MS? No problem (ok maybe some but we’ll get manage :D). Life, bring it.

Love, Eliz

alternative therapies

As I have shared before, I am taking the road of complementary therapy in achieving a life with MS: that of medical therapies and alternative therapies.

There is a lot of speculation about alternative therapy and Multiple Sclerosis.

Ive learned and been told that any person or any therapy that says “try this and you will be healed completely of MS” is not a truth. There is no cure for MS, as unfortunate as that is. “Please do not treat my disease as an info-commercial” is how I feel towards this approach. My favorite is the bee-stinging approach. Sorry, this does not fit into the sparkling life.

However, with that said, I believe, and there is some proof and research on other routes of alternative therapy. And when mixed with medical therapy, I hopefully can find some relief and slow the progression of this disease.

Diet. I’m not following any particular diet except focusing on healthy: fruits, veggies and the like. And, even after a few rounds of steroids (that on average are suppose to add 10lbs), I have successfully lost 20 lbs since being diagnosed. Yay!! (:

Exercise. Prior to being diagnosed, I was riding my recumbent bike or regular bicycle on average 1-2 hours a day. When first diagnosed, I really missed my bike (and my thunder thighs and butt…just being real :D). I am successfully back up to an hour a day on the recumbent bike (on the lowest setting). This has been very wonderful, if for nothing more than my mental state.

Massage. My favorite alternative therapy prior to being diagnosed. (If you have never gotten a massage, MS or not, I highly encourage it. Use Groupon or Living Social to find a great deal near you. It really is worth it!!). When I try to talk, walk, or do anything more than sleep, my body tenses up. Massage helps to relieve the tension spots and relax my over stimulated body. This past weeks massage was just heavenly as she focused on my neck and the area surrounding. I was very thankful.

Vitamins and supplements. Vitamin D has been shown to be a huge factor in MS; its in my medicine basket. Milk Thistle helps to keep the liver functioning well, another factor to take into condition with the beating my liver is taking. And of course, a multi-vitamin.

Sleep. I cant get enough of it. I’m.always.tired. Typical side effect of MS though. So I sleep in hopes that during sleep my myelin starts rebuilding. Good reason right? (:

Acupuncture. There is also evidence that this can help relieve some symptoms of MS. Today was my first experience with acupuncture and lets just say, I loved it. The therapist was very professional and listened and knew what I needed. It was a great experience. It was actually the best 20 minutes (during the needle procedure) I’ve had, symptom wise, since I’ve been diagnosed. Let that be a witness.

Essential Oils. Ive discovered a few essential oils that are hinted at providing some relief. My room, needless to say, smells lovely.

These are just a few alternative therapies that I have researched and tried. But really, they can be applied to any life, regardless if you have multiple sclerosis, another chronic disease, or are perfectly healthy. Although many are not covered my insurances (though I really wish they were!!!), and they many be pricey, its worth it.

So, at the end of the day, with contemplative therapy: how am I doing?

It depends on the hour. (: In the mornings I feel good; by three, Im done. If I get too hot, forget it. If its a day after I take an injection, I have the “rebif hangover”. I have little energy to do more than just the required get through the day.

I miss my friends. I miss my “go lets conquer the day” life. I miss driving and running errands. I miss my job. I miss shopping. I miss the ability to talk. I miss the ability to walk. I miss my old life.

However, I am not getting worse (as far as the symptoms are concerned). And this is a sparkling blessing wrapped with a beautiful bow. Im learning daily how to adapt to this new life and I learn daily of new approaches.

And I am not losing HOPE that one day a cure will be found. Or hope that tomorrow will be better. And Im thankful. Thankful for the days that I do have. Thankful for the body I still have. Thankful for my family and friends and the support they show me.

So whole-listic view: I’m still a sparkling. (:

I hope your day was lovely!

Love, Eliz

Bike MS - Team Sparkle

We’ve bumped up our Team Sparkle goals due to generous donations!! Thank you!!!

Please consider donating to this great cause, Bike MS: City to Shore that my brothers, dad and boyfriend are participating in. Even a $1 will be lovely!

To donate: http://main.nationalmssociety.org/site/TR/Bike/PAEBikeEvents?pg=team&fr_id=17956&team_id=306232

Please also help promote by sharing the above picture.

THANK YOU in advance. Each dollar donated is another reason to HOPE that a cure will be found!!!

Love, Eliz

You are not a failure at “being sick” if sometimes:

1. You feel angry about being sick.

2. You wish you weren’t sick.

3. You feel nostalgic about the things you used to be able to do.

4. You can’t fake it somedays.

5. You were physically unable to “not let ______ illness get you down!”

6. You had to quit school, work, previous activities, or were unable to attend a social gathering.

7. You did not succeed at curing your incurable/hard to treat/potentially deadly/not well understood/undiagnosed/controversial chronic disease with medication/hard work/determination/diets/supplements/alternative medicine/physical therapy.

There is no right way to be sick, and you are a human being. Prone to be happy, sad, and every other emotion in the book. Just like everyone else on the planet, it is natural to want to mourn, grieve, and gripe with other humans. And that is okay.

This was written by another sparkler suffering from a chronic illness. I found it very encouraging.

Which is odd, since it is a little more “depressing” than I usually allow my words to be.

But I find it encouraging regardless. I’m not alone in this and its ok to have a bad day or two.

Its a learning curve we’re all learning to hit.

I’d add another item on there:

8. You still hope each day that the sickness will go away. That a cure will be found.

(:

I am titanium

Life is hard with its twists and turns

as everyone of us sometimes learns.

And many a failure turns about,

when he might have won if he stuck it out.

Dont give up though the pace is slow

You might just succeed with another blow.

So stick to the fight when you’re hardest hit;

It’s when things seem worst you mustn’t quit.

Tomorrow is the anniversary of my MS journey of officially being diagnosed.

I took the picture below while I was in the ER waiting. My plan was to send it to my brothers to show that I was ok, nothing wrong.

Literally right after snapping the picture, I was admitted, rushed for an MRI, hooked up to equipments, blood taken. 10pm that night I was diagnosed based on the several lesions on my brain, spine and neck. I never got the chance to text them.

I could look back and see all that I have lost over the past 4 months. Ive made a list actually. Its quite long.

But there is a song I’ve been listening to on repeat, Titanium. The lyrics stick me:

“Shoot me down, but I wont fall. I am titanium.”

It helps to relate to this song in that my daddy is a metallurgist who specializes in titanium. According to wikipedia (and Im sure dad will confirm):

The two most useful properties of the metal form of titanium are corrosion resistance and the highest strength-to-weight ratio of any metal.

While MS, or rather, my immune system, may be eating away at my central nervous system (so weird to think about side note), could be looked at corrosion, my sparkle is corrosion resistance.

And while I may be just one person, I am strong as many due to the support and love of all of you.

Hence, I am titanium.

So MS, hit me with your best shot. I’m bulletproof.

That list of things I’ve lost. Its a list, on a piece of a paper. It has no life.

The list of things I still have, its in my day to day. Its my life.

I’m not quitting. Because I have so much yet to give and so much yet to receive.

And so do you. Never quit.

Love always, Eliz

goals

A while ago I set a goal of attending a summer concert.

It’s taken me a while to choose which one. And I have finally chosen it (well was guided to it with some help from the bf)!!

Farm Aid concert at Hershey Park, PA. (for more info: http://www.farmaid.org/site/c.qlI5IhNVJsE/b.2723647/k.2B7B/The_Lineup.htm).

I like this concert for many reasons for to name a few:

1. The line-up (some of my ultimate favs)

2. Farm Aid is a great organization. Seeming that my roots come from farmers and those roots are what are making me strong enough to fight MS, I thought it only appropriate. As corny as that may sound.

Currently I am working on seeing what the park’s accommodations are for the disability and handicapped. If anyone has any connections or knows of someone who could assist in this, it would greatly be appreciated!!!

So there you have it. My goal. Till September anyway.

Lets do it.

fighting for some sparkled hope

“You have to fight through some bad days to earn the best days of your life.”

Well, Ive sure as hell been fighting.

The past few days have been extremely challenging. More emotionally than anything else.

I let it get to me how much MS has taken away from me, all that it has done and will continue to do.

For a second, I lost hope. I lost hope because gosh darn it its been 4 months and all Ive seen is a path of getting worse. We hope and we hope for that “big miracle” and there is nothing down that path.

I was mad too. I had worked hard to get to where I was in life, socially and in my career. I had given up a lot to push myself to that point. To have it robbed, for a disease with no cure, could leave even the most hopeful hopeless. And upset.

Tonight a friend took me to see a movie (side note: this was quite an achievement for me in my day to day life. Points for me!). We went and saw “Ted”, which, has its rating for good reason (a word to the wise).

However, it was funny. It made me laugh. And the moral of the story was what is important in life are the little things, including the “stupid teddy bear”.

The little things Im still surrounded by. The little things I still have not lost. The little things MS cannot take. The little things can bring me hope.

So here we go again. Another month, another anniversary, another chapter, some more sparkled hope.

Love, Eliz

(side note: for all those that have written, thank you dearly and kindly. I will be responding shortly.)

titanic-lessons learned

For those that dont know me personally, I have a favorite movie.

A very favorite move.

A movie Ive seen over 100 times and yes, saw in 3-d right out of the hospital (the first time :D).

This movie would be titanic.

Many people throughout my life have asked me why I like, well, love, this movie as much as I do.

And there are many reasons; but one in particular that keeps me watching and loving.

Its the scene where Jack (a third class nobody who “luckily” won a ticket onto the Titanic) is eating with first class personal, on the request of his love interest, Rose’s, fiance. He is being questioned, pressured really, on his value of life; how he can stand having nothing to his name, barely making by, living “third class”.

His response, “I figure life’s a gift and I don’t intend on wasting it. You don’t know what hand you’re gonna get dealt next. You learn to take life as it comes at you… to make each day count.”

And they, the first class, toast to the third class’ life lesson: “To making it count”.

I wont go out there and say that James Cameron wrote the script to include that scene just for me. However, I will say that I have been able to learn from that scene and apply it to a lot of “third class days” I’ve had since I first saw that movie many years ago.

My life lately/currently could be considered “third class” in some ways. I dont need to explain why this conclusion could be made.

And there comes a point where you just have to throw up your hands and say “yep this sucks. But life, what I still do have, is a gift. And gosh darn it, I’m not going to waste it. So let’s make it count shall we?”

In this spirit, I made a goal today. I made a goal that I would get myself to a summer concert. For 7 years I’ve made it to at least 2-6 summer concerts. And I will not break that record. I dont know which concert, or when, but that is my short term goal. That is today’s “write it down and make it count”.

(Side note: If you have any connections with First Niagara or a concert venue to help accommodate handicaps, send me a message. :D).

In response to my plea for support, it was found today in so many ways. Via messages, texts, starbucks, mail…the below picture illustrates it only slightly (You can also see my OT of the day…doing some hemp bracelet making).

THANK YOU!

This is not an easy journey, as I shared earlier. The response I have been given from people who are encouraging me and uplifting me has made it more bearable today.

So again, thank you.

Dont forgot yourself to toast to “making it count”.

Love always, Eliz

PS: There is a loud thunderstorm outside and sputnik and I are highly frightened. #random