Accepting my MS

So it's been a while since I've posted anything.  I went through a little stage where I found it too hard to write about what was accuring and thought that if I didnt write about it, I didnt have to accept it.

The motto that is seen in many "encouragement" pieces for people who have MS is

"I have MS but MS doesnt have me"

usually followed with a powerful statement of how to "fight" one's MS.

For 18 plus months I have been fighting MS.  I've made it my life goal to understand why I have such an extreme case of MS and what I can do to stop it.  I've traveled to some of the best doctors here on the East Coast and have spent days trying new therapies and theories.

But no matter what I try or what doctor I go to, the end summary is the same: I have a severe, agressive, and disabling case of Multiple Sclerosis.

I have MS and unfortunately, it has me too.  It dictates my days, my physical well-being and even has caused further diagnosis such as Secondary Parkinson's Disease (so lovely!).

It took a few weeks of debating and inner struggle but I finally decided to accept my MS and stop fighting it.  To stop looking for those answers that arent there.  To accept that I'm sick, there is no cure currently, that the chances of me getting worse are high. 

And while some may look and see my acceptance as giving in, it rather has brought a free feeling.  There is nothing I can do about my MS except accept it and move on, with it in tow.  I will continue my medications, my therapies, my diets and alternative options.  But I'm not going to fight it anymore.  Its not going away.  The best I can do is accept it and strive for a better quality of life.

I have Multiple Sclerosis.  I am not a fighter...I am a survivor.  Each day I get up and live with MS, I am surviving my diagnosis.  And I will keep surviving.  And sparkling. 

So that's my little story on The Sparkled Life's motto life change.  Now that I have sorted out what direction I'd like to continue with, I look forward to sharing my road of acceptance back on the blog.

Starting with updates on Team Sparkle's Bike MS City to Shore ride and my day in the Big Apple!

Oh and I havent forgotten...the wedding DIY's are coming as well. 

Hope that today is beautiful!!

Love,

A turning of the page....

Life is full of chapters, new and old, good and bad, short and long.  Living is turning the pages in them, writing the destiny of the following chapters.

13 months ago to the day my life book was forced to change not only chapters but subjects, dreams, desires, routes.  13 months ago I was diagnosed with Multiple Sclerosis.

When people see me with my cane or in my wheel-chair, they ask "What happened?", with sympathetic faces and/or concern, expecting a "simple" answer of a car accident, a fall, a mistake on the stairs.  

As I reply "I was diagnosed with MS", their faces go from concerned to confused.  Because usually you dont see many people diagnosed with MS in the state that I am.  They suffer yes but many get to continue on their same path.  I do not.

There have been two occurances in the past few days that have caused me to question "what the heck am I doing in life?"

 (My "uhhhh" face.  Yes I take pictures to document my emotions.  It's all part of the sparkled life.)

1. My first MS symtpom, the one that led me to the hospital 13 months ago was the loss of feeling/sensation in my feet/legs.  To this day I do not have sensation in my feet.  They are continiously swollen and ugly looking.  

Due to this, I had to give up my guilty but lovely pleasure of wearing wonderful heels.  And, since I had quite a closet of heels, I ended up selling all my beautiful shoes.  We've come to the end of that chapter...I've sold my last pair of heels.

 (My last pair of heels and my not so beautiful feet)

Its ironic because the last pair of heels Ive sold were actually the last pair I purchased before being diagnosed.  I never even got the opportunity to wear them.  They were very extravagent, felt with fur edges.  How could you not love them?

Now they are gone.  Some other woman, size 10, will break them in for me.  And I hope she wears them with pride.  I hope they bring her good luck and many good travels.

Turning page #1...goodbye beautiful high shoes.

2. After much guidance, thought and prayer, the decision has been made for me to go onto Government Disability.  

Of course I procrastinated as long as I could on first, sharing this information (my pride) and two, applying because I didnt want to accept it. 

But over the weekend I completed my application.  My application to the Government that I, the girl who had dreams higher than the heavens, need's their help.  

It would only make the story oh so more interesting if I came across both my Bachelor of Arts and Masters in Business Administration Degrees the same weekend.  

 (I'm not sure how I lost my middle name in the between period of the degrees....)

My Bachelor of Arts years werent as dedicated however I did complete my program in three years while simultaneously working my political career (as mentioned earlier here).  

My Masters however I was more dedicated.  I finished the program also earlier than a full time student would (I like being quick and efficient in school items :D).  I worked full time as an Admissions Counselor during the day then spent my nights in the building next door learning the powers of Business.  I fell in love.  

I had the pleasure of being voted "Top Leader in the class" and "Best to work for", two items I take highly considering those who voted.  

The funny thing about all this is I never walked across a stage for either of these degrees, both due to graduating early.  And now, I cant even walk across a stage without assistance.  

I will frame these degrees, to remind myself that though I may be on disability and I may be limited by Multiple Sclerosis, I've accomplished so much.  To remind myself that at my core, I'm that same girl, disability or not.  

Turning page #2...defined by disability status.

These are two significant turning pages, two significant chapter turns.  It's hard to let go of things in life, it's even harder to deal with the things you've lost when you had no control over losing it.  

And as I approach new chapters of my life and my Multiple Sclerosis sparkle story, especially the upcoming ones, I hope the strength I felt while wearing my oh so extravagant heels and while establishing a strong educational business profile continues.  

I pray I can find strength in what I have lost in the hope of investing it in the things I can still achieve in my future. 

I've said it before but I'll preach it again...take nothing for granted.  From your shoes to your education, everything in life is a gift.  And should be treated as such.  Yes, there will be days in which "everything" doesnt feel like a gift but rather a very heavy burden.  But then, the ability to even carry that burden is a gift.  

Always a silver lining.  Never stop looking for it.

Love, Eliz

(PS: Today I wore a blazer.  This might not seem like a big deal but I had sworn of blazers one by one after being diagnosed, reminding me too much of my past Business Professional Career.  But today I wore one.  Proudly.)

("Mom, why do you have to show everyone my bad hair day?" Sputnik. Love him)

PS: Mom is healing and doing better each day!  Thankful for everyone's positivism towards her healing.

Medicine fail

Hello dear sparklers!

I left the blog post the other day in a ... statement as I had just found out some news from the doctor that wasnt so lovely.

The doctor had called to let me know my blood result came in positive for a JC virus antibody.  What this means (in so not medical terms) is that the medicine I was being infused with, Tysabri, is now being attacked by my body.  My body is creating little cell-men that arent alowing Tysabri to do it's thing.  It is rising against it.

There is a silver lining: at least we know something.  

The hardship is again there is a medicine that doesnt work.  Again I have to go through the process of determining what to do next.  Again I have to start over. 

The great thing about Tysabri is that it really helps with lesions in the brain, where my most active and serious ones are.  That is another frustrating point for I dont believe there is another medicine that not only helps slow down the progression but also helps heal lesions.  Which is why we were so hopeful and took the risk with Tysabri.

All to find out that my body is rejecting it.

It's funny in a way.  I had all the tests that could be done the past week.  And everything came back normal range.  I'm a healthy 26 year old woman.  

Im so healthy in fact that I have an EXTREME immune system.  

So extreme that it attacks my own body (hence creating MS). 

So extreme that it attacks foreign objects (medicine to help with MS).  

It's funny and then it's not.  It doesn't make sense.  

All this is another awkening as to why we need more research, more medicine and a cure.  

No person should be perfectly "healthy" by all standards but spend days in bed, napping and not moving.  

MS needs to be more of a cause.  It needs to be more of a movement.  And that is why I am so open about my experience, just for these reasons.  Also to let other MS sparklers know that "you're not alone!".

Where we go from here...for the next week or so I am to journey my day to day symptoms and such.  Then end of April we will meet and discuss and turn to new plan.

It's been a year.  I'm running out of options.  Which is why the help to promote the orange of MS awareness is SO important.  

Keep fighting on Sparklers!!

PS: On a side note, Mom is doing well and healing. She is finding the use of my old walker quite useful and is getting up and around a few times a day.  Progress!

Love, Eliz