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
A while ago I set a goal of attending a summer concert.
It’s taken me a while to choose which one. And I have finally chosen it (well was guided to it with some help from the bf)!!
Farm Aid concert at Hershey Park, PA. (for more info: http://www.farmaid.org/site/c.qlI5IhNVJsE/b.2723647/k.2B7B/The_Lineup.htm).
I like this concert for many reasons for to name a few:
1. The line-up (some of my ultimate favs)
2. Farm Aid is a great organization. Seeming that my roots come from farmers and those roots are what are making me strong enough to fight MS, I thought it only appropriate. As corny as that may sound.
Currently I am working on seeing what the park’s accommodations are for the disability and handicapped. If anyone has any connections or knows of someone who could assist in this, it would greatly be appreciated!!!
So there you have it. My goal. Till September anyway.
Lets do it.