Monday, May 19, 2008

If you can dodge traffic, you can dodge a ball!

I've been swamped. I went to a CLE where someone said, I swear to God, "It's been a great learning lesson." Awesome. Bureaucracy rocks!

I also met some militant disability rights people who are very accusatory about my views of disability laws and their "ableist" perspectives and biases. Aren't I the one with the disability? Aren't I the one giving myself shitty shots three times a week that make me look like a pink polka dotted skin rashed pincushion freak? What is "ableist"? What does that even mean?? These people want me to (apparently) admit that because I have a medical issue versus a psychological or learning issue: (1) I'm lucky that I am able to be diagnosed within the "established mainstream medical community", and (2) I'm OBVIOUSLY not stigmatized, degraded, or discriminated against because of my diagnosis. Oh obviously!

I have to tell you, having any disease/condition/problem/disability, be it mental or physical, is basically The Suck. Who wants to trade their "psychosocial" diagnosis for my freaking incurable degenerative neurological disorder?? Bah!

Anyway, the bottom line is that people are weird. I already knew that, but it's good to have it confirmed once in awhile.

I'm getting married three weeks from Friday. Weird!

Also, I'm learning to drywall. A girl can never have too many skills to fall back on.

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.

Sunday, May 04, 2008

Stuff and things.

Today we registered for wedding gifts. It sounds fun, but really it's exhausting. By the time we were done I pretty much didn't want to get married anymore - even with the free gifts. We also had a hard time because we kept feeling guilty about how much everything costs...I mean, I don't want to ask people to buy me a $129 Calphalon sauce pan...but, somehow I overcame my fear and registered for a bunch of stuff that I will love and use all the time, but that is NOT cheap. It's weird to think about having grown up cooking implements. This is my third marriage and his second, and it's the first time either of us has registered for gifts. It was fun to point the scanner gun at things though. Click - it's mine! Click - it's mine! Very easy to get carried away.

We also bought wedding rings today. Tungsten steel for him (no, seriously), and two tiny diamond bands for me, one for each side of my engagement ring. Mine might not be ready by the wedding, but that's OK...we'll still have the piece of paper, the unending love and devotion, and a 10-piece set of Calphalon to show for it. Right?

That brings us to the wedding. June 13th. Friday, June 13th. Friday the 13th. Oh well. My mom was born on Friday the 13th and she's pretty cool, so I'm going to work with it. We're going to Vegas...a small elopement there and then a HUGE reception/party here in July. I think it works better that way. Then we can really enjoy the party without the wedding stress...we're doing a huge backyard barbeque. With a cupcake tower. I heart cupcakes!

Let's see...what else. I'm typing this on my beautiful sunny back patio, which is pretty cool. Other than that, we are just trying to keep up with wedding plans, honeymoon plans, working, taking care of the house (The Boy is drywalling the basement right now), and doing all those regular life things. Add in the MS, perpetually numb hands, and medication side effects, and it's pretty much a neverending party. WOO!

Oh yeah, I also bought an at-home chemical peel and gave it to myself today. Swear to God, the label says that if it's burning, it's working. No pain, no gain - I guess.