Ended/turned the page of two chapters of my life today.
(The fact that goes with the feeling of “uhhh my life?!?!”)
Read more on The Sparkled Life website, http://www.thesparkledlife.org/2013/04/a-turning-of-page.html.
Ended/turned the page of two chapters of my life today.
(The fact that goes with the feeling of “uhhh my life?!?!”)
Read more on The Sparkled Life website, http://www.thesparkledlife.org/2013/04/a-turning-of-page.html.
There are certain things that happen in daily activities that bring me back to previous memories.
Before ms memories so to speak.
Today I had a very specific one.
I was driving to starbucks (surprise). It was a gorgeous day, sunny, warm enough to have your window slightly opened. And a breeze.
The breeze was what got me.
It took me back to about a year ago. I had gone to the DC office and was headed home.
DC traffic is awful, truly awful. But if you leave at a certain time, sometimes you can miss it, or at least skip the stop and go traffic and maintain a speed higher than 10 MPH.
This was not one of those days. It was a stop and go, 1.5 hours to get home kind of a day.
But it was beautiful. Last winter was very kind to NOVA.
Sun-room open, fun songs playing, thoughts twirling through my mind. Thinking about the meetings I had that day and how we could make that potential lead a client.
Phone call…”Eliz, we need a proposal, looks and sounds like this, get it by Wednesday?” Sure thing. Mind turns to proposal writing and creating an outline.
As I remembered and relived these memories, I couldnt help but let a tear fall.
I was on my to becoming Miss Corporate America.
I even had the picture ready.
I had worked so hard to be where I was at. I had sacrificed so much. And I was happy, content, pleased with my job. I liked going to work, and it wasnt just because we lunched and I worked with my friends. It was because I felt I was making a difference, I was working for a company with a strong corporate purpose. It was cutting edge, modern, new-age, and I was right there with it.
All my life, I wanted to become either the first woman President or the CEO or President of some company. Those were my dreams. Those were my hopes.
And a year ago, I could say that I was on my way.
Now, I feel like I peaked at 25.
It hurts so much to think of the potential that was left behind. The potential in me that cant arrive because of a disease that’s eating away.
Yes, this causes me to question why I worked so hard, question God even. Why?
Why couldnt I just live the life I had worked so hard for? Why do I have to live this one instead? The one that has me tied down, the one that dictates how my days go.
I want to hate this life. I want to kick its butt. I want to run away, run back to a year ago and press pause. I want to go back to the moment that my immune system went cray cray and take some extra vitamin C. I want it to stop.
And then I come back to the realization…there’s no use. This is just the way life is.
Its not fair though.
I dont know why I get to live this life and watch while others get to live the one I so wished for.
But I do.
Its good to recognize my frustration, my disgruntles with my current life status.
Its also good to realize that I cant go back and change it. I can only learn to adapt and make sure I have control over what I can, such as my approach towards this new life.
Which today isnt a good approach. But its a real approach. And sometimes, at the end of the day, thats all I can give. A real, honest, I hate MS approach.
And if I cant be Miss Corporate America, I guess I can settle with Miss MS Sparkling Princess.
To sparkling tomorrow.
a few days ago I mentioned how most of my posts are based around Starbucks.
Well, here we go again. (:
I have a habit of attending the same starbucks regularly, to the point where I become what one would call a “regular”. I would like to think of it as having lots of starbuck friends.
When I had my first episode of multiple sclerosis a few months back, my mom/dad/brother would drop me off for a few hours at the starbucks down the road. At the time I used a walker (sexy I know…it had pink tennis balls too) so it didnt take long for people to notice me. I made starbuck friends.
When I had my second episode, it was much more convenient to attend the starbucks with a better drive-through. The other day though I did stop by my old walker starbucks. They off course commented on my upgraded “legs”/arm crutches, only to then tilt their heads in shock a tad when I open my mouth.
But they treated me the same and wished me luck as I headed out the door.
My starbucks in DC was right across the street and, conveniently, on the way to work. (I must mention I lived less than a mile from work…yet some mornings, it could take me up to 10 minutes depending on traffic. #dcproblems). This was an unconventional starbucks; it was a starbucks location inside the Safeway.
There were three main people that worked there. Two in the morning and one in the evening. It didnt take long for us to start our starbucks friendship.
My mom especially appreciates these starbucks partners because during her visit, they asked if she was my sister. (:
I got a starbucks the morning of March 21st, the day I ended up in the hospital and was diagnosed with MS.
“Venti iced coffee, unsweetened, room for cream” was smiled as the doors opened in a Jedi fashion as I walked into the store. You cant help but feel like hollywood when this happens.
And then, I never returned.
I titled this post “the silent goodbye”. There are so many things in life that follow this route.
Ive had to say goodbye to a lot of things in the past 5 months. Most of them I cant fight because there is no use; it is what it is.
So I silently say goodbye.
Hope for the best.
And find another starbucks.
Moral of the story: you never know when you might be faced with a silent goodbye. Make sure to present each encounter as if it were the last.
This does not mean to cry and hug goodbye as if you’ll never see each other again. That would be awkward
It means put away your phone (facebook, twitter, instagram, texts can wait…Ive realized this) and just BE with that person. Smile at that person. Say have a good day and mean it. Just be nice.
I know it sounds utopian. And there will be days in which you will gosh darn want to hit everyone in your path.
I’ve been there.
But then a stranger will smile at you. And you’ll feel like the Grinch on Christmas: your heart will start to grow. You’ll realize: dont regret the silent goodbye.
a few months back, either in january or february, my bf and i were spending an afternoon in State College.
He had just purchased a new bicycle and, since he has a friend who owns a bike shop, was planning on putting it together.
While I love the unpacking and the careful procedures of putting together a bicycle, my ADD kicked in within about 20 minutes. Luckily there was a Starbucks around the corner, where I decided I would go hang out for a bit.
So, I went to the starbucks. Only to realize I didnt have my purse, wallet, money, phone…whoops. Just me, starbucks and an ipad.
At first, I felt a little “naked”. I felt as if all eyes were on “the girl who came in here just to sit”. Then the next question came to my mind “what am I to do with myself until bicycling building is over?”
Prior to that moment, my life was an abundant overload of running. I was always on the go, always on to the next thing. From highschool, through college, up to the moment I moved to DC, I was running through life.
I had purpose in my running and accomplished many great things, met many great people, and learned many great lessons.
But, I was running.
My heart had been set on moving to DC for quite a few years. So when a job opened up, I “ran” to it (literally) and within three weeks, I had an apartment, new address and started a new job.
DC is a running city.
And I ran with it.
And when I wasnt running, I was driving back and forth to Philly area. The hardships of a long-distance relationship.
Every day was packed with over 8-10 hour work days. Every weekend had an agenda, including a few more hours of work. I had to be doing something every moment otherwise I felt as if I wasnt “living”.
It wasnt until that day in Starbucks that I got a short glimpse of a realization: it had been a long ass time since I had just sat. Didnt look at my emails. Didnt work. Didnt return that phone call. I believe I spent about two hours on pinterest that day. And the other hour spent watching and listening to the conversations of those around me.
Half-way through this just sitting adventure, my bf came to the rescue by purchasing me a coffee. He apologized for the wait and honestly I told him, no need. I was enjoying myself.
I stopped running and actually felt life.
Multiple Sclerosis has left me unable to run, literally. Physically and mentally.
At first, I was very upset to not be “running”. I had to stay off facebook and social media sites because I felt less, comparing myself to the stories and pictures of others running, while my life stood still.
It has been hinted, by more than one doctor, that the stress of my life over the past years had contributed to the large dramatic discover of MS.
That my running was what stopped me from running.
So why this long story?
In hopes that this story helps to create awareness of the need to slow down.
To take that day off from work to do absolutely nothing, or spend it with family. To skip class (just once) because you are having an awesome conversation with a new friend. To smile at that guy you think is cute. To make a list of the three things that are most important to you and then make sure that you have those as your focus daily. To just sit. To start a blog. To write a letter. To paint your nails while watching that movie you love. To write a song. To karma cleanse and apologize to an old friend. To help with the dishes. To eat together as a family. To actually craft or cook something from your pinterest page. To just sit and listen to your favorite song(s) on repeat, contemplating the lyrics and why you love it so much. To do something about your stress levels instead of complaining about it. To have a job you actually like. To face your problems instead of facebooking your problems (that is not my own…but its a good one).
Never be too busy making a living that you forget to make a life.
Ive had to go through a “running” detox. It has not been easy. And I dont think I’ll ever fully get use to it. There are moments where I literally dont move, just sit, because there is nothing more I can do. It’s quite a 180.
Let my disabilities be living proof that life can be good though still when you’re not running.
What makes life good is life itself. Dont run right through it.
(disclaimer: this does not mean to be a lazy butt. :D)
PS: dont you love how almost all my blog posts have a mention of starbucks? Funny. (:
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.
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.
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…
love from the deepest of my heart, eliz
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. (:
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
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.
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!
The men in my life are joining forces and conquering the Bike MS: City to Shore, which begins in Philly and ends in Ocean City, NJ, my old “hometown”.
Please consider donating to the team : http://main.nationalmssociety.org/site/TR/Bike/PAEBikeEvents?pg=team&fr_id=17956&team_id=306232. Any dollar amount is significant, whether it be $1, $10, $50 or $100.
All money raised goes towards Multiple Sclerosis awareness, research and HOPE for a cure.
Thank you in advance!!