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
Yep, that’s right. I dated the Batman.
Our epic tale found on The Sparkled Life blog.
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.
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