Finding happiness no matter the circumstance!!
8 things that make life easier on The Sparkled Life blog!!
I am so a spoonie.
A letter to my fellow MS Sparklers on The Sparkled Life blog: http://www.thesparkledlife.org/2013/07/to-my-fellow-ms-sparklers.html
The perfect excuse for any life decision: napping.
Read all about it on The Sparkled Life: http://www.thesparkledlife.org/2013/07/when-all-else-fails-we-nap.html
The questions of why and the power of trust blog post up on The Sparkled Life: http://www.thesparkledlife.org/2013/05/here-i-am.html
MS is hard.
Day diagnosed, day released from rehab, and today…not much as changed.
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. ♥
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
It’s hard to go through friendship with a chronic disease.
How i’m learning…and surviving…
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.
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.
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!
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.
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.