my christmas list

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:

  • additional research on the causes
  • relief for patients
  • hope for the spirits of all MS Sparklers
  • specifically for myself that I can respond to a medicine and get this awful disease on a tame track
  • most importantly: to find a cure.

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.

So like, how are you?

Im dying.

Well, not really.  But the drama queen in my thinks so. (:

Mixing Multiple Sclerosis with Shingles with Princess Modeling Syndrome = A very bad time.

My symptoms are pretty much the same.  I walk with an arm crutch.  Sometimes I just fall over.   My speech is jumbled.  Sometimes my brain goes “ahhhh”.

Whats worse is the fatigue.

I wake up tired.  I have a never ending to do list that Im lucky if I get to one or two things.  Im so behind on my thank you letters and what I want to do with my life.

Today it hit me like a little pinch: is this really my life?  Am I really so sick that I cant even walk more than 30 steps without feeling tired?  When did all this happen?

A cure will be found for MS.  Or hopefully the cooler weather will help.  Or hopefully I’ll just damn it get better.

For right now though, I rest, I drink lots of water, I hope that my shingles go away and I hope that I can get some sparkle back and start living life.

Any Multiple Sclerosis out there that have hints or secrets on how they manage fatigue, would greatly appreciate the tips!  Shoot me an email at sparklebutonce@gmail.com.

Much Love, Eliz

goals

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. 

lets get real

warning: this isnt my best, most positive post.  this is me being real in my situation.

It has been made clear in the past few days that I have not been doing the above.  I have not been true to myself; I havent been seeing my situation with my own eyes and feeling my true heart. 

Ive been “seeing” and “feeling” words of encouragement and hope, mostly out of fear of wanting to accept or admit the reality of this situation.

The reality of this situation is: Im very sick.

I have a very severe case of Multiple Sclerosis.

I have multiple lesions.  One specifically on one of the “most unluckiest places” of the brain.

Its affecting my speech,  to the point where I have to sign papers allowing others to speak on my behalf for I am not able.   

Its affecting my hands and fine motor skills, to the point where I cannot hold a baby.

Its affecting me cognitive and memory, to the point where I have a hard time remembering anything if I dont immediately type it on my list.

Its affecting my sensory items.  Too much noise, too much light, too many people, too much anything, can affect me so much that my body shuts down. 

Its affecting my walking, to the point where I will never be able to wear my beautiful (and many) stilettos or healed shoes ever again, let alone be able to walk without some type of device. 

I didnt respond to steroids, the 4 doses I had.  I hardly responded to plasma exchange.  My options for medical relief are limiting by the day. (And for those wondering, I am/have started alternative options). 

This happened, literally, overnight.  And for 5 months, I have had no relief.  Its hard to go from a girl who was at her mid-20’s prime, to this: a girl who can hardly get out of bed. 

Each day its said “It will get better” and each day, I either get worse or remain the same.  If I do have a good day, its followed by two bad.  

The truth: Im really sick.  Im really disappointed.  Im really frustrated. 

Im not mad though, for I know everything happens for a reason.  I also havent lost hope.  I just wish that this chapter of “reason” would come to a close. 

Ive been semi-hiding this from my blog because of three reasons:

  • Its easier to not admit it myself. 
  • Im stubborn and prideful and dont want to admit it to others that I’m actually having a hard as hell time.
  • I do believe in the power of positive thinking and hope and cheerfulness in healing.  But there comes a time for reality as well (hence this post). 

Im admitting it now because of two reasons:

  • to encourage further support.  Its selfish to ask but Im running out of rope to hold on to.  I have hope.  And I’ll always have sparkle.  I was born with it. (:  But I would love some relief, some good news.  Some news that shows that Im getting better or at least am not getting worse.  Just a moment.  Your support can help get me there. 
  • to help you to learn how to love me currently.  Right now, the best way to love me is to send me a text, a message, an email, a card.  This brings SUCH joy to my day.  For those that live close by and want to come say hi, I will admit, visits stress me out (see over stimulation comment above).  But if we can agree on a 1 hour visit with a starbucks involved, I think we can come to a strong agreement. (:

The hardest part of all this is watching others lives move on, while mine stays in a standstill.  And I feel some friendships slipping away because of it.

But, as I said to someone the other day, thats why I was given a wheelie chair, so I can learn how to keep up.  It’ll just take some time.  Patience.  Not my best virtue.  But I will practice and eventually I’ll get there.

I’m not the only one suffering.  We all have sufferings we go through.  Which is what makes us all human.  Which makes us all in this together. 

So lets get real.  You support me, I support you.  Promise. 

In closing, we hope.  We hope that damn it tomorrow is a better day.  That someone smart comes up with a cure for MS or a new drug that provides relief or just even answers.  HOPE. 

And with you’re help, I will get better.  I will have better days.  I will be able to go spend more than an hour with friends and I will be able to go shopping and I will be able to do all the things that I love.  I’ll get their eventually, I just know it. 

To illustrate that I’m not completely heartbroken or depressed, I thought I would finish this quite depressing post with a bit of auto-immune humor. (see below)

Thank you in advance for your support and love.  As always, love, Eliz