Tuesday, October 24, 2017

"OMGGGGGG" - a new post


The sparkled life blog is back!

But wait...didnt I swear off writing and blog posts February 2016?  Isnt the previous post titled "the last post"? Are we trying to make blog writing happen again?

Yes, to all the above.  

I had sworn of writing on the sparkled life.  Why?  It got too difficult.  I needed a break.  My finger muscles contract making typing difficult.  I didnt want to be known as the "the girl with MS".  I felt I had nothing more to say.  And on and on and on. 

Recently I was at my neurologist where there was a new patient, a woman my age.  She didnt look scared but she did look overwhelmed.  It took me back to when I was first diagnosed and how I had wished I had someone to tell me it was all going to be ok.  

That's why I started this blog in the first place - because I had searched for someone, anyone, with a "story like mine" and couldnt find one.  All I could find on MS were stories from people with less hard symptoms like a numb thumb (any symptom is challenging but where were the people who could no longer walk/talk/use their arms?!?!?) or kids with info on how they "healed" their ms with witchery.  

So, I thought, "hell, I'll write the story".  

That was a while ago.  And I had forgotten that flame, that ambition, until I saw this girl the other day.  I so wanted to go up to her and tell her its going to be ok, that she was going to get through this, that it was going to hurt, it was going to be a bitch, but she was strong and was going to make it. 

Butttttt you cant really do that in doctors offices.  

Instead, that fire ignited in me again.  I thought about all the lessons and mistakes I've gained in the past 5 years since diagnosis and how they just might be able to help others.  And maybe, that girl will get a random facebook message from her aunt with a link to this blog.  And she'll be comforted that shes not alone.  

And that's why Im back.  (:

So, whats happened in life in the past 18 months?  

Well, here are some highlights:

1. I relearned to walk!!  With Edward 4.0, the arm crutch, but still!

2. I rode a bicycle!  And crashed terribly.  And destroyed my left arm.  And now its made of metal with a pretty bad ass scar.  And I was banned from regular bicycles.  And stubbornly became a recumbent bicycle rider.  And I'm obsessed with it. 

3. I traveled the world!  Bosnia, Croatia, Spain, Paris, California, Illinois, Florida, North Carolina, etc etc etc.  I've seen the sights and I've also had the chance to see so many dear friends get married. Its been amazing.

4. I went disease management drug free for a long time.  I stopped my Rituxan treatments around the same time of the last post.  And it felt SO GOOD to be free.  But........

5. I'm back on disease management drugs.  After a year-ish of being free, it became suggestive that perhaps Rituxan was actually working.  So I had my first re-infusion this past August and it was intense and awful.  But we're hopeful?

6. I quit the Mayo Clinic.  And got back together with my pittsburgh doctor.  I'm good with it. 

7. I love my life!  MS has made it increasingly difficult and each day seems to be more intense.  But life is so beautiful and I'm so thankful that I get to live it.  

I'm excited to be back in the saddle.  It feels good. 

Let's do this.

Love, Eliz