Monday, September 18, 2017

Multiple Sclerosis and Me: 5 Things I've learned about MS - Part VIII

5)
Meme Maker - Had a MRI and was diagnosed with Multiple Sclerosis Wasn't Cancer! This was me at first. 
4) The Americans with Disabilities Act is younger than I am. 
3) MS doesn't only effect movement.

BAAHAhahaa! If I pinned it before, I'm pinning it again!...'cause I can't remember if I pinned it before..lol

2) Even with seven TYSABRI infusions under my belt, Multiple Sclerosis can seem feel like you're fighting an epic battle.


1) People with disabilities endure the same oppression, harassment, discrimination, injustice, abuse, bigotry, prejudice, and inequality that's awaited every minority a century before us. Society seems to suffers from severe short term memory problems, and the term "protected party" exists less as a definition and more as an annoyed eye roll wondering why we can't remember the Civil Rights Movement, Hitler and his Jewish pals, or Women's Suffrage. 

I argue that like something shiny we get distracted by whatever language is used in the discrimination du jour, in this case disability and the atrocious language I endured from of all people my parents. But look past the words, however vile, and focus on obtaining justice for the actions. And as it turned out, you don't really wanna fuck with me. Only nigga that I trust is me. Fuck around and make me bust this heat  That's the devil, they always wanna dance.



Saturday, September 2, 2017

Multiple

The face of Multiple Sclerosis has changed so dramatically in the past 20 years it's virtually had unrecognisable facelift. 



2 years ago I experienced a MS flare up so intense regular morphine injections were needed to keep me from losing consciousness, I now consider myself a morphine sommelier, try the 2007 its delicious  When I emerged I could barely walk even with a walker and the idea of ever running again seemed as unlikely as flying.

I expected myself to rage at the unfairness of the disease, life, and every imagined missed opportunity that was now lost behind this confusing, limiting disease. Eventually I reached out the enormity of MS resources and forced myself to acknowledge the fact that 20 years ago, my medical options would have fit in a thimble. I had tremendous success with TYSABRI, the very first medication I tried and experienced exactly zero side effects. I've heard the stories of people diagnosed at 16 or those who needed 4 or 5 medications before anything made some sort of difference and realized I'd dodged crippling side effects, outrageous medication costs, comparatively and it made me feel like the luckiest person on earth. 

I have my 7th infusion this month before I return to DC. I have a handful of goals set out for myself but my true mission is that if I can make one difference, any difference, for MS advocacy, then whatever pity, regret or remorse I might've harbored would be worth the price of admission. I've seen a lot of men and women with MS who are truly strong as fuck, so much stronger than me and I'm so proud to be on their team.


How I assume (know) I walk now

Friday, September 1, 2017

Labor Yay!

My Labor Day Weekend Plans:

1. Organize closet

2. Clean apartment


3. Catch up on laundry

4. Read Cloud Atlas

5. Eat a full jar of Nutella