Monthly Archives: April 2009

Shake, shake, shake… shake, shake, shake… shake yo boootay!

Posted in Just Life. by

Oh hi! Miss me?

I took a haitus from In It For The Parking because I was depressing the hell out of myself by constantly looking up info on MS and seizure disorder and obsessing about it. I had become that girl that I talked about in my first entries… the shut in who was only thinking about her disease. WEAK! Totally weak! laaaaaaamely weak.

Life has turned around for me in a great big way, and that rocks my world.

For those of you who have been keeping up with the Adventures of Rae, here’s what’s going on.

The Dance De La Medicine
The Lamictal that I was on to control my seizure disorder was not controlling the seizure disorder. It only took us, oh, 9 months to figure that out.

So, boys and girls, it’s one again time for that lovely dance, the MEDICINE MAMBO! *shakes her bootay*

I’m dropping dosage of Lamictal and am increasing dosage of Topamax over the next 6 weeks until I’m totally swapped over. So far, it’s *excellent*. I’ve had 1 or 2 seizures TOTAL in the 2 weeks since I started the combined treatment. That is STELLAR compared to the 4-5 seizures I was having nightly.

This also had a HUGE amount to do with what was going on with me emotionally before.

See, Lamictal is also used as a mood stabilizer for people with bipolar disorder. I, however, do not have bipolar disorder. I actually tend to swing more toward the depressive side of things.(After law school, who would have thought?!) Anyway – the Lamictal was entirely muting the “manic” side of my emotional scale. In layman’s terms, Lamictal was making me more depressed than I already would have been with MS, a seizure disorder, and Copaxone.

The switch to Topamax has been *amazing* because I suddenly and almost tangibly remember who I am… and I am WAY cooler than I have been over the past few months.

Other cool side effects: weight loss and more energy. Love it. Love it times a million.

Also, because break-through seizures can be caused by menstruation (kinda icky, but true), I’ve switched from Ortho TriCyclen to Seasonale, so that I only have to deal with that fun and frolic 4 times per year.

The Dance De La Future!
Yes, that’s right. I SAID LA FUTURE! I’m finally doing better enough that I don’t have tunnel vision. I’m not giving up.

Towards that end, I’m doing a lot of awesome stuff.

Awesome thing #1: Songwriting. I had forgotten how awesome songwriting is. I love it. I used to do it multiple times per day when I was at Berklee. Whenever I do it, I light up. I’m now working with another musician (one that’s actually professional!), and there’s a good chance I can actually make some money doing music. After letting it be nearly all-consuming (save for being online with friends) for 14 years of my life, how cool would it be to actually make some money?

Awesome thing #2: Studying for the Bar. Yeah, I said that I was relieved to have missed the bar exam and that I’d rather drill a tiny hole into my head and allow all the fluid to slowly leak out before I’d prep for that test again — but to be fair, I was also having full-scale convulsions and was on medicine that wasn’t working when I said that. Now that I’m feeling more capable, I’m giving it a shot. I earned the license by going through 3 years of law school and prepping like cah-ray-zee last year, so why not go ahead and get it? It’s not like I have anything better to do.

Awesome thing #3: Potentially Working! I sent out a ton of resumes prior to signing back up for the bar, figuring that I’d need a job if I weren’t taking the test… but I’ll need a job anyway – so why not a cool one? I have an interview tomorrow with a company that works in social networking marketing, and I have a feeling it will be good. I really liked the vibe I got from the guy on the phone.

Basically, life is looking up in all areas. Hope things are going just as well for you. 🙂

Yes, I’m still alive.

Posted in Just Life. by

I know I haven’t been posting. I also know that I start almost every one of these entries out this way. Well, this time, I’m not going to promise to write more frequently – so there.

Right now, I’m up with insomnia. I’m aching in the WEIRDEST places (my forearms and shins), but other than that, I couldn’t be better.

Over the last several days, I’ve been getting back to myself – almost entirely. No seizures, no numbness, no nothin. It’s really pretty great.

But that doesn’t explain why I haven’t been posting.

I know that journaling my experience may be beneficial for me and for others – but it’s one thing to talk about it in your diary and another for you to think of it as your responsibility to be a strong voice in the cause.

When it comes down to it, regardless of whether or not I thought it would help other people, I created this site for me. I needed to prove that I was giving back to the community/world or whatever while I was unable to get out of bed or off the couch.

Now that I’m getting better (and by better, I mean totally used to my seizure meds), I’m able to resume doing things that I enjoy and things I don’t enjoy but must do. (Can we say studying for the bar exam?) I’m not saying that it leads to less time to post here, but rather that I’m less focused on my body, and hence less focused on the subjects that pertain to that body.

Not posting on In It For The Parking as though it were my job is helping me to stop letting MS become the defining characteristic of my personality on and off screen.

I doubt that I’m alone in this – having to make the choice between focusing on my self and focusing on my body or the disease.

It’s way too easy to get caught up in how you’re feeling – before long, you sound like one of those horrible cartoon caricatures of old people who can’t find anything to talk about besides their bodies, medicines, doctors, etc. I don’t know about you, but that *certainly* isn’t the person that I want to be.

At first, I cried when I thought about it — how I’d never be able to be as physically well as I was prior to having this disease, how bizarre it would be to try and make positive changes when OBVIOUSLY everything seemed too hard, how hopeless the rest of life seemed.

But suddenly, a light peeked through my stormcloud of doom, and I remembered something very important.

Who I am is stronger than any disease.

So, I’m getting back to me.