Friday, May 09, 2008

The thing about MS

Here's the thing about having MS. You look SO good! It's funny, because if you read books or websites about MS (and why would you not?), PwMS (that's People with MS for all you non-initiated) talk about this phenomenon ALL the time. I look exactly the same as I did before I was diagnosed. Exactly the same as before I had my first exacerbation (ahhh...the totally numb feet during law school, turns out it wasn't stress Dr. Smartypants!). Well, I'm fatter. But other than that, I look exactly the same.

However, inside my head, it's a different story. Multiple sclerosis literally means "multiple scars". Inside my brain are scars that result from inflammation caused by my immune system attacking my central nervous system and lead to a disruption of the nerve signals traveling to and fro. And, lucky for me, I also have scars in my spinal cord nerves...a good indicator of potential mobility problems later in life.

As a result of my scars, or as I like to call them, "Tinglemakers", I have numerous ongoing, yet invisible, symptoms. These include: numb hands, tingling in all extremities, trigemic nerve pain (pain in facial nerves and teeth - it's excruciating), headaches, blurry vision in my right eye, and fatigue. Fatigue is a result of nerves finding new, but less efficient, ways to do things. Think of saving a penny off of every dollar you spend - it adds up! If your nerves reroute themselves in a slightly less efficient manner - by the end of the day - it adds up! As a side note, most medical books call the scars "lesions", but I hate that...it sounds so...so...brain herpes.

So, I don't know where I'm going with this. I drop my keys a lot. I need more naps. I fall down quite a bit more than your average Jane. It's not the end of the world. The side effects of the meds are honestly worse than most of the actual disease stuff. But, it's coming up on my one year anniversary of diagnosis (Happy Memorial Day everyone!), and I'm not sure I can say I've come to terms with all that this means. I look in the mirror and I just see me. And I kind of think that's OK. I mean, I don't want to be one of those sad-sack, I'm all about my disease type of people. But, when I feel really shitty, I kind of wish I could have a rash (ok, maybe not a rash so much) or turn blue or something...just to prove I'm not faking it. Maybe I just need physical validation of my occasional internal ickiness. (PS: Dear God, I promise I do NOT need physical validation in the sense of a cane, wheelchair, breathing tube, or any other horrible MS related medical nightmare. I'm sorry I even brought it up. Love, E. Spat).

OK. I've rambled enough. The Boy is making me dinner and has poured me a HUGE glass of wine, so off I must go. These meds are supposedly hard on my liver, but I kind of feel like a life without wine and cheese is a life I'd rather not live. They test my blood every three months - someone would let me know if I was sliding down hill in the liver department - right? Let's drink to healthy livers!!!

PS: Go visit Postcards From Yo Momma. Hilarious.
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