Hi! Im Eliz. I like to write and post things. I love life and sparkle. I drink Starbucks and sometimes pretend Im a princess. Oh and I have MS. NBD. (:
Im so over writing about MS things that I decided to go the therapeutic route and write “Things About Me, part 2”.
I feel somewhat better now. ♥
http://www.thesparkledlife.org/2013/05/things-about-me-part-2.html
Love, Eliz
Today had my second round of plasma exchange.
More info on the sparkled life blog: http://www.thesparkledlife.org/2013/05/plasmapheresis-fancy-blood-thing.html
Love, Eliz
It’s hard to go through friendship with a chronic disease.
How i’m learning…and surviving…
http://www.thesparkledlife.org/2013/05/what-im-learning-about-friendship-part-1.html
Much love sparklers, Eliz
My mom has said to my twice now (if not more), since the beginning of “The Sparkled Life”, that sometimes I only show the good on this site…and forget to show the bad.
Not that every post must be pessimistic. It’s just that it is often protratyed that I’m better off than I actually am.
I answered with Pride: if I told the truth, who would then want to be my friend? Who would want to hang out with this girl? Who would want to date this girl? Who would want to take this girl seriously? Who would want this girl on their team?
I’m too much to love, too much of a liability.
My pride wants to “sparkle” my misfortunes out of fear in that showing my weaknesses, I’ll be left alone for the fight. Im afraid that people will eventually stop messaging me, stop asking me to hang out, stop wanting me in their lives.
Its already happened with some. So maybe that is why my pride built these walls.
But this time, truth must trump.
Because, if my end goal of this trip, The Sparkled Life, is to create Multiple Sclerosis, then Im not only doing myself a disservice but all those fighting the fight as well by not sharing.
The truth is, I’m really, really sick.
So sick that at the moment typing this draft is causing me pain.
Starting last Friday and trickling down through the week, my body relapsed to a bad point.
The real truth is that MS is destroying my body. And overnight, it took all my hard work of fighting MS away, without even asking. #howrude
Yesterday was suppose to be my 4th infusion of a drug that is/was suppose to help me manage this disease. However, once the hospital saw my condition, they immediately sent me to the neurologists to figure out what the hell was happening.
I can confirm that yesterday made it on the list of 5 worst days of my MS journey. I wont go into details but rest assured, it is up there.
The humor of it all was that during the chaos, my mom held my phone to answer phone calls, texts and emails. This is currently what my phone looks like:
(this is my “Today is ugly and I hate MS face”)
At least we could find the humor, bunny ears and all.
To spare details, today went a little bit more smooth. A hospital visit, another MRI.
(making hospital gowns look good since March 2012)
Honest truth: I wear the sunglasses to hide my worn, tired, cried on face.
We have no answers yet, no confirmations.
My team of doctors want what is best for me, they really do care and will start Monday on additional tests, treatments, therapies. etc. I have faith that the next steps will help bring me back.
So, again, the truth is Im very sick and I need, no, I beg, for your prayers, for your good vibes, for anything you have.
I’m tired of being that girl who one day is walking around town with her third leg to the next not being able to hold a fork, walk, type and trembles with pain all throughout her body. I’m so over it.
Sparkle I will forever. But those sparkles are now arriving in tears of discouragement. I need your love.
Thank you.
Love always, Eliz
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.
Love, Eliz
let me paint you my thursday evening picture.
its 10:30pm. I’ve been lounging in my bed, in my little pink with zebra accent room, with sputnik curled at my feet.
In my hands is a cup of tea: acai berry and lemon ginger. To help with sleep and detox. A great mix.
The only light is coming from a candle that I “borrowed” from my mom. Its providing a great, candle-like glow.
For the past 20 minutes I’ve been staring at my computer screen. At a specific picture actually.
Not many thoughts are crossing through my head. I spend 20 minutes reading and re-reading those words. Trying to find hope in them. Trying to find the sparkle in them.
But, as you can see, it’s pretty black and white. The hope and the sparkle, after 20 minutes of “searching”, I realize has to come from me. And I’m not quite sure how.
Today was suppose to be an easy visit to the Neurologist office. And I’m sure compared to the many others that attended that office today, my experience was minimal.
I went with a list (I have a list for everything) of the 4 top items/questions that I had.
3 of the 4 were pretty straight forward. “Dont hold me to this number but this is the norm”, “Maybe” “Hopefully”, the usual answers. Nothing too shocking.
The 4th however was a little heart-breaking.
The symptom that led me to attend the ER March 21 2012, receive my first MRI and cause me to be diagnosed with MS, was numbness/tingling in my feet and legs. Its as if your foot fell asleep but never wakes up. You go to stand and you cant feel your feet. Walking becomes extremely difficult.
Over the course of the past few weeks, these symptoms had come back after an 8 month hiatus. I wake up in the morning and hop (ok slug) out of bed and it’s like “wooh, feet, time to wake up loves!!”
I had gone a few weeks just figuring it was the weather (I mean, it is freezing outside!!). But today decided to mention it, figuring it would be confirmed as “just a short come back, no need for worry”.
Instead, it is believe it might actually be another (ANOTHER) active lesion, a flare up. Which means another ride in the “white donut” aka MRI. If it comes back active then steps will be made to help bring the activity down. I made it very clear that steroids and I are not friends so we will go a different route.
Yet again, another visit that all answers lead to the all over-bearing MRI results.
Yet again, another possibility of an active lesion.
Yet again, another possibility of nothing being able to help provide any relief.
Yet again, me trying to find that hope and sparkle to get me through.
I have to remind myself of how far I’ve come. My stubbornness pays off so well.
Hear my speech compared to 6 months ago and you’ll be amazed. I’m down to one crutch for short distances (though I still fall once in a while. I find it funny). My fine motor skills are continuing to grow; 7 months ago I couldnt raise a fork to my mouth. Tonight I waxed my own eyebrows. A risk perhaps but I am glad to report that I still have two (nicely shaped) eyebrows.
But today’s adventure shows the true course of Multiple Sclerosis. You dont know. Your body is like a ticking clock and you are just not sure what might go next. And there’s no stopping that clock.
I want to yell FUDGE you MS. I am so frustrated. I can do all that I can but really, my life and this disease are not in my control.
So I stare at a black and white picture with words that I hold on to as my hope, as my sparkle. I have to trust that there will be a cure or some new research with answers. I have to trust that God wouldnt bring me to a mountain I couldnt climb. I have to trust that I am surrounded by people that love me, no matter what. I have to trust in myself, that I am strong enough to make the black and white sparkle.
I have to remember that while MS might have control over my nervous system, I have control over how I react to the situations. And though I may have a bad day or seem lost, I must keep my head up.
After all, my princess crown will fall. (:
Love and sweet dreams, Eliz
It recently was suggested to me by a person that maybe Im taking this MS factor a little too hard. That yes, its challenging. But really, its just like a new coat, you put it on and you go. To stop making it such a big deal basically.
I see the point the person was trying to make And granted, I dont think this person really meant any harm in what was said.
But after some thought I felt, well, defensive and slightly hurt.
I have always been one to wear my heart on my sleeve; I say what I mean and I mean what I say (unless I apologize for what I said and then I didnt really mean it :D).
Im also very passionate.
So when you mix those two together, its not hard for me to justify this blog, which is centered around my life with MS, or my pictures, or my MS humor, or my MS posts or my hospital check ins.
Why do I make my health life so public?
I’ve shared this before, two reason summary:
1. Selfish reason: because I need all the support I can get in order to get through this. In the words of the lovely Catherine Zeta Jones: “There is no need to suffer silently and there is no shame in seeking support.”
2. Unselfish reason: to create Multiple Sclerosis awareness. As stated prior, there is so much NOT known about MS. No doctor can explain to me why I have MS. No doctor can explain to me why my lesions arent healing. No doctor can cure me. No doctor can take away my symptoms. This is the case for all MS sparklers. So if my story can bring some awareness, then I’d be denying the greater good by not sharing.
Yes, sharing the interpersonal beings of your health life is a bit, well, personal. And awkward. And maybe sometimes over the top.
I use to look at others who blogged about their lives and as much as I loved reading it, I would wonder what motivated them to write? What motivated them to share their life story?
And now I see; it was because they had a passion. Whether for art, music, fashion, DIY, motherhood, photography or just life, they were passionate enough to write it out for their audience, even that be of 1, to read.
Im going to take a selfish moment and say: I am damn proud of where I am today. I do have a severe case of MS. And I do have disabilities. And I have days where I have difficulty getting out of bed.
If I treated my MS as if it was NBD (no big deal), just a coat you throw on, then I’d probably still be in a wheel-chair, with terrible speech, using my weighted utensils.
Instead, I treat my MS as a big deal. A big deal that affects every part of my life and of those around me. And because I think this way, I wake up every day ready to battle the incurable b-word of a disease.
If I didnt fight, I’d be denying myself a well lived life. I’d be denying my family and friends and puppies the ability to stand with me. I’d be lessening the dignity of other MS sparklers in the same fight.
With that said, there is a factor in which I cannot let MS hold me back. Or my fighting MS become a curse that haunts my days. I must remain positive and hopeful. This is a work in progress but also something I have come to pride myself in; to remain positive and hopeful. Really, what other choice do I have?
In life you are handed certain cards and sometimes they are a great hand and sometimes they are terrible. But you still have to play them, you still have to work at it.
If not, you’ll have a growing to do list of dreams and things that wont ever be crossed off.
This may be one of my most defensive posts Ive written. And its discouraging to have it written right before the magic of the holidays.
But like I said, Im a passionate person.
And if I’m passionate enough, maybe I can contribute to a cure being found. And then yes, Multiple Sclerosis and other auto-immune diseases will indeed be NBD. But we’re not their yet. And until we are, I’ll, we’ll, be fighting.
Now, I must end with some type of positive note. Because it is Christmas. And I am thankful. To have made it this far with MS, to have my family, puppies and friends close by and to be a sparkling babe, good days and bad.
When we were children we were grateful to those who filled our stockings at Christmas time. Why are we not grateful to God for filling our stockings with legs? ~G.K. Chesterton
Much love, Eliz
As a child, I believed in Santa for, well, a little longer than I should’ve.
In my defense, when I was young (1st grade I believe), Santa called me and said that if I wasnt good (and I had been very bad that evening), he wasnt going to make a visit. I definitely shaped up that year and sure enough, he came.
Writing my Christmas lists were a very detailed process. I took great care into asking what I wanted for and Christmas morning came and my list would be there under the tree. Even things I didnt write on my list but had said I had wanted were there. Which convinced me he had elves everywhere.
Further evidence: we’d leave carrots out for the reindeer and sure enough, the next morning, they would’ve been reindeered chewed on.
As I grew, I started to realize that the tooth fairy, the Easter Bunny…they were indeed fictitious and my parents.
But Santa had to be true.
My little analytical mind went through all the reasons. And while I wouldnt be able to name all those reasons today, they were enough to keep me believing. A part of me was also scared that if I didnt believe, I might not get what I wanted (thats what everyone said at least!!!).
Well, one fatal day, I was taken aside by my mother, who expressed with deep sorrow that unfortunately, this year the family wouldnt be able to afford a keyboard. I believe we were in the process of moving (or considering moving) and she was going through all the reasons why I wouldnt get this #1 thing on my Christmas list.
I held it together but my head was spinning.
First, how did mom know my #1 thing on my Christmas list? That was sealed and sent to the North Pole! And what do you mean you cant afford it? Santa can afford anything!
Light-bulb.
Tears.
Then vowing to never tell anyone that I believed for that long (obviously it eventually came out).
I guess one of the main reasons why I liked the idea of Santa was because you could write a list of your desires and then one magically day, Jesus’ birthday in fact, they would be under your beautiful Christmas tree.
So with that thought, I’d like to ask you a favor. I’d like you to be my Santa. And to help with my Christmas list.
Its very simple, only one wish.
My Christmas List:
1. Hope for those with Multiple Sclerosis.
Within this one wish, there are a few bullet points:
How can you help with this Christmas wish?
Some easy steps:
1. If you know someone with MS, send them an extra note saying you are hoping for them, hoping for MS. You have no idea of the effect this can have on someone who has MS.
2. Donate to the Multiple Sclerosis Society: http://www.nationalmssociety.org/
3. Share and help create MS Awareness. Share my story, share others stories; all of it is greater awareness, which leads to great chances of everything.
4. People always say they wish they could “do more”. I will give specific instructions: when you are thinking of a person who is sick, send them a text. Send a prayer. Send good vibes. Again, it helps more than you know.
The hardest thing with having MS (and I know this is a common theme with many other MS sparklers) is the incurable factor.
To have a disease that has no hope of going away is a challenge to live with everyday.
For me, its extremely challenging, to be 26 and know that at any moment, I could have another relapse. That I will be on medications in order to live until further notice. That I will be dependent on those around me.
It can be extremely daunting.
Which is why we need Hope. (:
Without hope, it can be very easy to fall into the daunting spiral, circling down. Depression is a common and serious side effect of MS. But it can be helped with love and hope, from you, from me.
So that is my special request: for you to be my little Santa’s in helping with my Christmas wish.
And when I write my book on my journey with MS, with its final chapter filled with news of a cure, I’ll be sure to attribute it to my Santa’s.
THANK YOU!!!!
Much love, Eliz
PS: And there still may be a chance that Santa is real. He totally called and left me a message today. Saying that he would bring me a car and to leave him french fries.
Santa sounds an awfully like my best friend.
Light-bulb.
For most of this blog, I’ve kept God language to a minimum.
It is not because God is at a minimum in my life.
But rather because I see this writing portal as a way to create awareness of Multiple Sclerosis and with that, I wanted to be able to connect with every person, regardless of religion.
I hope this can remain the case why I take a time out and write “the God post”.
For I have a huge heart and believe God has the same. Thus, while I am Catholic, I also believe that there are many ways to getting into heaven.
I grew up in the Catholic church, with a traditional “go to mass every Sunday” family.
Once I started to grow into my own, I began to see that religion was really a way to grow in spirituality. So while I participated in religious organized sacraments and the like (and believed in the value of them), I became more spiritual through them. And through this, I had the pleasure of learning to call God my bff.
And I dont always need a church to recognize He is with me. We “converse” daily, from discussing in the car about the very slow driver in front of me to discussing my future and what it holds.
Sundays have been the most difficult for me since getting sick. When I can make it to mass, its the outing that brings out the most direct realization of my disabilities.
In college, my roommate and I use to have “Catholic Aerobics” (as a joke) based on the ups and downs, the standing and the kneeing, that is involved in the mass.
I cant do the ups and downs, the kneeling, the etc in mass.
While my speech improves, synchronized talking is something that I havent conquered yet.
Passing the money basket, well, usually I hope it just kinda skips over me so no reaching is involved.
And the stares. Everyone stares at church. You’re not suppose to but people do.
So you mix that all together and you have someone who has a challenging time going to mass. But I still go.
Why?
Good question. In short answer, because of what I mentioned above. I believe that religious outings lead to a deeper spirituality which leads to having the ability to become a better person which leads to becoming closer to God.
During this journey, Ive had a lot of people say to me “I’ll pray for you” or something along those lines.
Ive never doubted the sincerity of those words. And I’ll take all the prayers that people will send to me.
But when it comes to those in suffering and those who are sick, sometimes actions speak louder than words.
Ive had people who have said “I’ll pray for you” and then turn out to be the least supportive person or actually hurt me by their actions.
Then Ive had others who have never said “I’ll pray for you” but have shown me their love and support through works. And I’ve felt their prayer. And I respected them more for it.
I understand this blog post has been a little space cadet. Granted, its 7:30am…I havent been up this early in a while. Nor have I had my Starbucks yet.
I’ll leave with some bullet points, some final words:
1. I encourage everyone, no matter if religious, spiritual or not, to spend 10 minutes meditating on their life. I forgot how powerful this is until I spent a few minutes yesterday just meditating in silence, reflecting on all that is happening and has happened. It wasnt depressing. It was uplifting. Because I reflected on how far I’ve come. And thats worth celebrating. (Champagne anyone?)
2. “Faith by itself, if it is not accompanied by action, is dead.“ Make sure your words follow your actions, your life. Granted Im not the perfect person to preach this. But we all can learn from it.
3. Know that no matter where you are at, God doesnt care, He’s seen worse.
4. Question “why?”. By questioning this, you may come across some paths, some encouragement as to why bad things happen in life. “Your hardship, tears and sorrows you are facing now are the training of your spirit. The strength you learn from there brings you more love and smiles in your future.”
5. Live like there is no tomorrow.
6. Discover your own spirituality. Discover how you best meet God. Discover how you can become the best person of yourself. Discover how you can be a fabulous, sparkly person in this world.
7. Never judge. You never know the path that someone might be asked to walk. Instead, ask how you can help. Love that person.
8. Above all, be thankful for what you do have, instead of what you are lacking. This is the hardest sometimes, especially when you are asked to lack in more ways than one. Its ok to be upset by the hardships. More than ok, sometimes necessary in order to heal. Shoot, be mad, yell even. But before I go to bed, I always find it beneficial to think of 1-3 things Im thankful for. It keeps me from going to bed crying over what I’ve lost.
It would only be appropriate, for me, to end “the God post” but expressing, publicly, my thanks to God.
Throughout the past 8 months, the hardest 8 months of my life thus far, Ive never found myself mad at God.
I feel even closer to Him. Not because I say more rosaries or attend adoration or daily mass or the like.
Rather because Ive had the opportunity to look at myself and discover how I can become a better person. This isnt saying that Im a saint by any means. But Im growing in myself. And with each step in growing, I feel a little pat on the back from God, a little closer.
He truly has given me the ability and the peace to survive my daily struggles, the ability to sparkle even in times when sparkly seems so dull to do.
And I feel Him helping me, “carry my cross”, as we Catholics say.
For that, I am thankful. For that, I have continued hope.
Thanks dude.
Love, Eliz
Monday November 15th 10pm.
Opening night showing of Twilight.
Yes, I was there. “Team Edward” t-shirt and all.
I stumbled upon the Twilight series mostly by accident. I was traveling (a lot) for my past job and was sitting next to a same aged professional girl also on a business trip on a plane from pitt to Chicago. She was reading Twilight. She insisted I must get the book, its a great plane read.
Plus, I was spending my summers speaking to 1000s of youth; what better way to convince them that I was cool than to be up on the popular twilight vampire series.
I was hooked.
For some reason or another, I was always traveling or away on opening nights of the movies. So, I’d go alone. Me, myself, and 200 plus screaming girls at any site of Jacob taking of his shirt (fortunately this last one only had one scene).
This year, while I was surrounded by many supportive loves that would have gladly sacrificed two hours for the movie, I decided to keep the tradition and go alone. My dr’s note paid off, wheelie and I got in first and I must say, it was my favorite of the series.
It takes about 20 minutes to get home from this particular theater and while driving home, I was contemplating the post I could write about “the end of the saga”.
About how I started the Twilight saga in the beginning of my professional career, traveling all over the country. Intertwined in the series were a few moves, a MBA, an up the ladder job, a love, etc. I essentially grew with the series.
And as the saga ended, I felt like it was also the end of a chapter for me. Granted, I had no idea of what my future would bring (wouldnt we all love an Alice Cullen as a sister for future telling?). But I was feeling stable. Just like the movie ended.
So that was what November 15th’s post was going to be about.
But then I got home. I was getting ready for bed and started to feel sick. My breathing was heavy, my chest hurt and my throat started to close.
Perhaps a panic attack. Maybe Edward was just too much for me.
So I laid down, relaxed. No change.
After about an hour, I called a nurse, explained my symptoms and was advised to go to the ER. (May I mention, there are probably 10 Urgent Cares within 5 mile radius…none of them 24 hours).
So I wouldnt have to explain any of my past, I decided to drive to the UPMC that has all my history. Which meant I drove to the city, at 2am, yes, in my condition, solo.
I really thought it was strep throat. That I’d be home by 4:30 or so, before my parents would wake up, and it wouldnt be a big deal.
Well, 4:30am rolled around and it wasnt strep. And I wasnt leaving.
Text message: “Mom, Dad….dont panic……but…..”
The ER neurologist was very realistic (unfortunately, not a Dr. Cullen though). He saw my past, he saw my “love” (sarcasm) for hospitals, he saw that I was pretty much “healthy” which meant this was most likely due to MS and so he got real with me.
Two options: be admitted, get the tests done that day perhaps (it was a Friday…), wait through the weekend, then go forward Monday. Or (I liked the OR), go home for the weekend and get the MRI done Monday, coming back if I were to get worse.
Home I went. It was an ugly weekend. Not fun.
But my sister came home and that was exciting!
Monday had a dr visit early in the am and then the long MRI in the evening. A lovely day (sarcasm).
Wednesday was my birthday (yay!!) and my family and friends did a fabulous job of making it a great celebration of my life.
Thursday was Thanksgiving and very lovely! All the family was home and we had a very nice little break. I hope you and yours had a lovely Thanksgiving as well!
So now we are at following Monday. I get a call from the dr’s office. Whenever they call, you know its not the most fabulous news.
As always, good and bad news.
Good news: no new lesions!! Yay!!!
Bad news: one of my old lesions has flared up. This has happened about 3 times since first being diagnosed. Hence these “flare-ups” and pseudo-relapses I have.
What does this news mean?
Basically that the disease management drug I was injecting myself with 3 days a week wasnt doing its job. (Why cant a medicine work like its suppose to, just once?!)
So new plan: change medicine. I will be moving to a one month infusion (positive) of the top of the line MS drug. It has a higher percentage of helping MS cases (especially those with lesions on the brain) but also has severe side effects (I will be monitored closely).
The heartbreaking thing about this change is, well first, the unfortunate realization that the 8 months of painful 3 times a week injections didnt work.
The second, this is the knot at the end of the rope. If it doesnt work, there really isnt anything else on the market that “is better”.
So we do what we always do: we hope that it works, we hope that continued research is done and we hope for a cure.
Twilight Saga ended. But unfortunately my MS saga only gets to continue.
So thats the update.
I had a moment of “why am I telling the whole world of my MS health story? Its kinda awkward” the other day. The awkward part is true. The answer to the question though really lies in three areas:
1. Therapeutic for me
2. An easy way to update a plethora of people in one easy place
3. To hopefully generate awareness of MS, how it affects lives and why there is such a need for research and a cure
I thank you, for reading. For caring. For hoping.
Unfortunately we all cannot be vampires or wolves and live forever.
You get a birth date, a dash, and a death date.
The dash, thats life. Thats you. Thats your legacy. Thats what you did for yourself, for your neighbor, for the world. Something so small - yet so profound.
So while I’m living my -, I hope you join me in really living yours. Hell, if I can still find some freaking sparkle after this journey (granted some others have it so much worse) than so can you.
Make sure you are living your - to the best of your ability. Especially with the Christmas, holidays and New Year coming…make it a good chapter of your -.
Soooooo. Enough cheese-ball for one night? I believe so. (:
Here’s to HOPE as always. Here’s to retiring the Team Edward shirt. Here’s to continuing the chronicles of the MS sparkler.
Love always, Eliz
So what have I been up to?
Well, I had the MRI. Which came out….clean!! Yay, no new lesions.
This was great news I received Oct. 29th and it was a very crazy day. But I was extremely excited because I was taking a trip to DC to see my past company, 3Pillar Global, and then head down to Outer Banks (a trip graciously provided by my past boss/leader/friend. :D).
However, things did not go as planned. Even with some alternative routes and plan changes, I was left solo the night before the trip.
But decided to make the trip to DC area at least. And away I went. I made it, great timing, good driving weather and I made sure to check in every hour or so.
I had to special thanks Jeep and Starbucks (of course) for my successful trip.
Being in DC area was a little rough. I was staying less than a mile from where I use to live. I was passing all the areas that I use to shop at, eat at, get together at, etc. I was passing all the areas, the last areas, I went before this big MS journey.
The only way I could/can compare it to was a death. My “past” life had died, very unexpectedly.
I use to compare it to a break-up. But with break-ups, usually there is a decision making process or a compromise, an opportunity for convincing to stay together (if needed), peace (if it was right) or the chance to call a few months later for coffee.
But no, this is not the case. It happened overnight, there was no decision making process, no opportunity to compromise, and definitely no chance of catching up for coffee.
Its simple: My old life is dead.
Since my plans to Outer Banks were canceled, I had a few days opened and decided to stay in DC area till Friday. This gave me some extra (very special) time with 3Pillar Global. Even had the opportunity to enjoy a dinner with some of my favorites at Dog Fish Head, our old staple.
I got the lunch crew to do funny face picture with me. Big achievement. (:
I sat in on a business meeting. It was so fun to watch it all in action (and see a little of my legacy still hanging around :D). But, as with everything, it was hard too.
Insert next chapter: Philly. Good friend Reg suggested that I come up to Philly and spend the weekend with her and her family and then drive back to Pittsburgh together. #perfect
We had a great time, lots of sleeping, daily Starbucks, some really great meals, Halloween candy, Reality Housewives and quality time with her wonderful family.
Reg and I at Max Brenner (a chocolate restaurant…fabulous, highly suggest).
And then we drove home; and be we I mean Reg (which I was so thankful for!). We listened to track 10 on Taylor Swift’s new album many times and discussed life. And still wanted to be friends at the end of it!! Oh, and we even saw a reindeer. #santaisreal
Once home, I needed much R&R. Had a little bit of a rough few days but seriously, I had a hell of a week. And did a hell of a job. So a little R&R was perfectly ok.
This Saturday a friend came into town and we spent a girls night at the Omni, a sushi dinner and some time at a very chic champagne bar.
It was my first night “out” and well, I survived. “You look so good!!!” was the most common phrase and I was encouraged from the support.
At dinner
At the chic lovely champagne bar.
And now, Monday, I went to the doctors twice before noon (yay!!! #sarcasm) and spent a couple hours on the phone with drs and making appointments. Its ending well though with watching the Steeler’s play (and hopefully win!!!) and looking out for my mom who is at the game. #lucky
So in summary, I have no new lesions on my brain, I took my first solo road trip and I went out for the first time.
I did well.
But at the end of the day, I still come home with MS. I still have symptoms. I still have disabilities. I still have to take medications.
I recently heard these lyrics (they may or not be from TS) :
“Id like to be my old self again but I’m still trying to find it.”
What is hardest to deal with is I will never be able to “find” my old self again. As stated above, that old self, has passed.
I know and am confident that the new self will be great. I’ve stated it before: I will not let MS keep me from having a great life. My core of who I am is the same. Its what has to be built around it I ponder.
Basically, I have to start putting together my puzzle. The problem is, I dont even know where to start.
Perhaps I shall google it.
“Even storms run out of rain.” #amen
Much love, Eliz
PS: fun side story. There was a wedding at the Omni the evening we were staying there. Since the lobby is so beautiful, we spent a few moments lounging prior to bed. There was a friend who had, well, maybe a drink or two too many.
I had half of bottle of water with me, which he asked if he could have a sip. Being that I didnt know this friend, I said no. After a little persistence, I decided I’d make him a deal:
$5 for my half full bottle of water.
Thinking he’d walk away, he pulled out his wallet and very carefully paid me $5 for my water.
Maybe I have found my new calling….(:
(this has nothing to do with this post but I thought it adorable)
A side effect of MS, which I have already expressed here, is fatigue. I have unfortunately been gifted with this side effect.
I have daily enhancements to help with the fatigue.
But its still a fight.
Due to this, my days are specifically planned to take into consideration fatigue and my energy levels. I believe we’ve come to a pretty good balance in my life.
And by we I mean myself and fatigue. We still have a ways to go before we’re friends.
While in rehab, I had daily schedules that began at 7am, included 5-6 plus hours of therapy and then visits, etc. However, since leaving rehab, I havent really had such long days.
Yesterday however, as this blog title represents, was the longest day in my career as a MS Sparkler.
The schedule went something like this:
9:00 am - Hair blowout and hand massage to prep for the below
10:15 am - Visit DMV. Get new driver license. Officially a PA resident. (I should mention this is a huge deal. Ive had an Ohio license since 2008. And havent lived there since 2010. Woops).
10:45 am - Thankful for a quick DMV visit (can you believe it?!?!) and head to a random post office to send in my disability / princess parking sign papers. Apparently they only accept them through the mail not in person. #fancy
11:15 am- Starbucks. Venti Iced Soy Two Pump Pumpkin Spiced Latte please.
11:45 am - Decide to drive into the city early. Reason: MRI. Start to become nervous. Good friend Reg makes a fabulous move and says she’d meet me at the hospital. Or else….
12:00 pm - Drive to city. Tunnel version.
12:20 pm - Arrive at hospital. Realize there is no way I can make it from parking garage to actual hospital entrance. Valet. $8. #perfect
12:25 pm - Although having been to this hospital many times (and spent many a day “living” there), I realize I have never “walked” in this hospital (besides PT work).
12:30 pm - Take a chill break in the lobby. A rush of emotions takes over me. Reality check of my life. But hell, I drove here. I walked in. #bettereveryday
12:45 pm - Go to check in at registration…they dont have me in the system. May I remind you, I lived there for over a week and have visited many times. #hospitals
12:50 pm - Go to admissions. She finds me and all my paperwork in the system. Prints off all my info at MRI registration so they’re aware that I am indeed “in the system”. #mykindofwoman
1:00 pm - Chill in MRI lobby. Look around. Im the only one under age 50 and pretty much the only one with a walking device. But I looked cute. #confidenceboost
1:20 pm - BFF Reg comes to the rescue, starbucks and all!! Of course as soon as she arrives its a whirlwind of moves and room changes and injections and needles. But was so thankful she was there.
2:00 pm - MRI time. Recognize the face of the MRI picture taker as the guy who inserted contrast in my vein, which failed and the contrast went into my muscle/places it shouldnt. I had tried to explain to him that “hey, this hurts” and his response was “only a few more picture and you’re done” and rolls me back in. But it legit hurt. My arm was double the size and had to get some pain meds/IV after that adventure. Fortunately, he did not put the contrast in me this time. #thankful
(the past contrast fail).
3:00 pm - Done!!! Decide it was treat time.
3:30 pm - Enter cheesecake factory. Spend quality time with reg. Laugh, tell stories, joke, talk girl things. #whatwedobest
5:00 pm - Head home. Traffic. Though Pittsburgh traffic does not compare to DC traffic, it wasnt exactly lovely.
6:15 pm - Home. Bed. Sleep. (:
Even though yesterday was very long and I did get tired by the end of it, it meant a lot to me that I 1, survived and 2, could do all that my schedule included.
I have good days and bad days. Which I remind to people who say “But you’re doing so well!!!”. Well yes I am, you only see me on my good days.
But the bad days arent as bad as they use to be. Which is encouraging.
And I survived a hospital visit which couldve been my haunted house adventure if I had let it get to me.
Which brings me to a point: how you react to situations is all up to you.
Things are going to come rushing at you, good and bad. Sometimes we do have an instinct nature to react a certain way (such as, stinkbug = yell for brother to come and kill and flush). Others though, we do have the ability to react wisely.
I found myself alone, in a hospital, in a big city, re-living the worst days I have ever had so far in my 25 years. I thought I was going to handle it just fine. Once there, I realized that this situation wasnt exactly “fun”.
So I sat and chilled. I calmed down. I realized I am better today and that is what I must focus on.
And then I moved on.
Thats how life is. You have to move on. If you dont, then you’ll be living a life of saddened regret.
Learn from your past. Dont let it hold you from your future.
With love, Eliz
PS: For those that didnt see my facebook post, I played the piano for the first time a few days ago. “Dont cry for me Argentina”. #bigmoment
PPS: Sputnik and I were trying on halloween costumes today. He didnt like the tu-tu. We’re still working on ideas.
“
Happy 7th month anniversary MS!!
You’ve really gotten on my nerves.
(hah good MS joke)
”We survived! We made it!! Bike MS City to Shore Accomplished!
And it was a fantastic trip.
First, I want to just say THANK YOU, to all who donated to Team Sparkle. We reached over our goal to $12,826, which is more than I could ever have expected. It means so much to have that support. You definitely made me smile. (: This whole trip couldnt have been done without your generosity, so, sincerely, thank you.
In my earlier post I mentioned that the trip began with the Farm Aid concert. This concert was a goal for me. A few months ago, when I was feeling rather low that life was running right through me, without me, I made a goal to attend this fabulous concert, proclaiming you cant say you arent living if you attend Farm Aid.
And it surely was a living experience.
The line-up was fantastic (see below) and the message was all but something to be supportive of. We had great tickets (benefit of being a disabled sometimes :D) and made it through the crowds of 22,000 people in my wheelie quite well.
Then came Ocean City, NJ for a week, home sweet home (kinda hah). The house we rented was one street over from where we use to live when I was little and before we moved off the island. It was a lot of fun to be able to just enjoy the ocean and the boardwalk and my family.
Sputnik and I woke up one morning to watch the sunrise. It was absolutely beautiful.
Its funny though as I looked down as we were watching the sunset (and took this picture)…as it illustrates my life. Footprints and cane prints in the sand. Life has changed. But Im still a Jersey shore girl.
Mom and Dad celebrated 29 years of marriage (wohoo!!!!) and took the night off to go out to dinner in Cape May where they went for their 10th anniversary. Driving by our old house (which was, at the time we lived there, a babe) was challenging as the new owners have not kept it up as to be expected. But overall I believe they had fun.
My Uncle Paul and Aunt Bette Ann (from my dad’s side of the family) made the trip down to visit for dinner. My Uncle Paul is quite a sparkle supporter and a fan of my blogging. He said he knew he had to bring three things: roses, starbucks giftcard and sparkle. And he did: they brought me a beautiful bouquet of roses, a starbucks giftcard I used shortly after and the sparkle I told him was their visit. (: It was a wonderful time.
The boys and dad spent the days preparing by taking long bike rides and prepping their butts for the 150 ride. Towards the end of the week I started to feel a little less than wonderful (weak more so) and an executive decision was made that I would only participate in the last 5-6 miles of the race instead of the practiced 25.
Friday night was a fun surprise when two of my best friends came to visit. It was truly so good to have them there and be SO supportive. And we laughed, a lot. Which I do with my family regularly; it is just nice to have friends that do the same. And they only helped in me feeling extremely loved and supported.
Saturday started the bike race. The men started out very early (I believe around 430am).
Captain Team Sparkle aka mom organized our whole team and really we could not have done this without her! And she made us cute sparkle sweatshirts. (:
I met the team right before the bridge to cross over into Ocean City. Now this bridge, for a girl with MS and a recumbent, was quite a challenge. But I made it. The fun part was that going downhill, I got up to the speeds of about 30 mph. It was quite scary (and I definitely concerned the rest of the team as I was speeding down) but in my head I kept thinking “the faster I go, the less I have the peddle!!!”. Typical.
(across the bridge…their concerned faces :D weeeeeee)
(brothers and I after the race)
Saturday evening my friends sparkled me with love (literally…they took sparkle dust and sparkled it on me) and provided me with a crown and a wand. Loved.
The men still had a day of 75 plus miles. Which they completed with smiles on their faces and only slightly sore bottoms. The best reward I believe at that time was the after race massages they all received. (:
Due to the generous amount of donations, we all received VIP status and VIP shirts. Something we will always treasure (or at least I will :D).
(typical)
Sunday evening we spent together as a family on the boardwalk (missing two family members sadly, C and T, and soon to be A). It was an absolute beautiful night, we all wore our sparkle sweatshirts and I wore my sparkle shoes. It was just a wonderful sparkle filled night.
I am SO thankful, again, for the generosity of all those that donated to team sparkle, all those that supported us through letters of encouragement, for my mom who organized the whole adventure, for my brothers and dad and mick who rode the 150 plus miles, for my friends who came to support me physically and for God who helped me have a really good week. And to the ocean. For the strength it provided.
(this is actually where I use to do all my dancing as a child. Another “life has changed picture”)
We all said we couldve spent another week or two at the shore. For me personally, I think ocean therapy is exactly what I need to get back on my feet. (: But coming home to Pittsburgh wasnt too challenging as it is beautiful, cooler weather.
Thank you again for all the support. Bike MS races across the country raise money for a very worthy cause: to provide hope and research for a cure for a disease that has none. So thank you.
For additional pictures of the trip, visit: https://www.facebook.com/media/set/?set=a.645920224980.2074072.144900133&type=1&l=7697416077.
Much LOVE!!! Eliz
First, THANK YOU to all who have donated to Team Sparkle for Bike MS: City to Shore. It means the world to me, fellow MS Sparklers and my family.
There is still time to get us to $11,000 (woot woot)! To donate: http://main.nationalmssociety.org/site/TR/Bike/PAEBikeEvents?pg=team&fr_id=17956&team_id=306232.
Again, thank you!
tomorrow i start my big post-MS journey.
First stop Farm Aid 2012 in Hershey, Pennsylvania. Then on to Ocean City NJ for the week to prep for Bike MS: City to Shore Ride.
A little nervous leaving the nest but its for a worthy cause: to show Multiple Sclerosis Im the boss damn it!
Throw up a prayer / send good vibes that I / we all survive. ♥
Here we go!!!!! Love, Eliz <3
