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
“An old soul” is what I have been told I have been gifted with. “Grandma” was my nickname from many of my friends.
According to a very reliable source (cough urban dictionary), an old soul is:
A spiritual person whom is wise beyond their years; people of strong emotional stability. Basically, someone whom has more understanding of the world around them.
Today I made a visit to the urgent care after the advice of my neurologist due to a pain I was feeling in my abdomen and a rash I was developing.
“It might be shingles.“ Though shingles is usually reserved for the age group of 60 and over, those with autoimmune disorders also have a high chance of contracting the situation.
So I took the advice and went. But made sure to match fashionably of course. (:
Oh the little things in life.
While shingles cant be diagnosed specifically through a blood test or urine sample, my symptoms and situation led the doctor to take the route of diagnosing it as shingles.
What is shingles?
Well, from my unmedically (yes I made that word up) uneducated opinion, shingles is a re-awakening of chicken pox. After one has chicken pox, the virus lays dormant in the nervous system. When the immune system is compromised (combine MS with a cold two weeks ago), it can create this dormant to re-awake, creating shingles. While chicken pox is mostly just itchy, shingles is painful. Yay!
And for those wondering, it is not contagious.
Fortunately, we caught it early. With the help of some anti-viral meds, we can hopefully kick it and lessen the pain.
(Side note to all those with auto-immune diseases, make sure to take care of yourself! Try not to get sick and if you do, take the day off and rest and get it out of your system. PS: Youre an awesome sparkler too!!)
It is hard though. This is the longest Ive gone without some type of episode. And though this is “minor”, as in I just have to rest a lot, drink fluids, take my meds, etc, it only adds to the stress level of having all these issues.
Ill be honest. I lost it for a moment today. Why cant I just catch a break? Why does it have to be another thing? Why do I have to fit in the 60 and over age group? Do I now get senior discounts?
So I cried, let that weakness out, did an anti-stress facial, took a shower, watched the opening football game, and realized something.
No matter what road you take, or choices you make, shit is going to happen. (Sorry for the language). Yes, some people have it easier than others. I cant answer as to why that may be.
But what I can answer to is that while shit may happen, its up to you to determine if youre going to sit in it or if youre going to flush.
It may seem impossible, it still may be hard. It might not go away. “it” being whatever is pain for you in your life.
With that said, never underestimate the power of HOPE. Believing in hope will not fix your problems, it will give you the strength to endure them.
Hope in yourself. Hope in your faith. Hope in your friends, your family, your loved ones. Hope in the power of positive thinking.
Yes, I may be 25. And I may be physically becoming an old soul before Id like to.
But hell, I look damn good for an old soul if I dont say so myself.
And when you all turn 60, I’ll be the really old soul who can share all that I’ve learned. (:
Never underestimate the power of hope.