what is MS, anyway?

world ms day logoIt’s World MS Day, a day that people around the globe share their experiences with MS to raise awareness of the disease and to drive research for treatments or a cure. There’s a great article here if you’d like to learn more about World MS Day, or you can go here to read all kinds of technical stuff about MS in general.

I have Multiple Sclerosis, MS for short.

What does that mean? Well, sclerosis means scars, so literally it means “multiple scars.” But where are those scars? In my brain and on my spinal cord.

MS means that the myelin sheath has been destroyed in some parts of my nervous system. Picture an electrical cord or a stereo wire: there are wires inside of a plastic sheath, right? In your body, that sheath is made of a fatty substance called myelin. Its presence helps the nerves to transmit their electrical impulses correctly. When myelin gets damaged, scars form on your brain or spinal cord and the messages traveling down those specific nerves get thrown out of whack.

Scientists believe that MS is an autoimmune disease, that tiny Pac-Man guys produced by my own body are nibbling at my spinal cord and brain. (Okay, that’s not how demyelination is technically described, but you get the picture.) The thing is, the scientists have no idea why this happens, so they can’t stop it or prevent it.

People don’t always understand that living with MS means something different for every single person. It all depends on which specific nerve is being attacked.

Let’s say someone told you that they had a computer virus. You might say, “Oh, yeah, bummer – I had a computer virus and I couldn’t print,” but they might respond, “Print? I can print! The computer virus I have makes my web browser crash whenever I download something.” Someone else might say, “Man, when I got a computer virus, I got the Blue Screen of Death.” Obviously, it all depends on which part of the computer system gets attacked by the virus.

That’s how MS is. If the nerves to your eyes are being attacked, you are going to have very different symptoms than someone whose myelin is being destroyed on the nerves to their arms or legs or bladder. The human body has two kinds of nerves, too – sensory nerves, which affect what you feel, and motor nerves, which allow muscle movement – and depending on which type of nerve is being attacked, symptoms can be very different. In fact, no two people with MS are going to have the same course of the disease.

So what does MS mean for me?  Continue reading “what is MS, anyway?”

99 things – #1 through #5

I stumbled upon an interesting blogging game the other day. (Edit: I am informed by Quinland that this is not a game, but a meme.)  You are given a list of 99 things, and you bold the ones you’ve done, elaborating on them if you so wish. You know I will so wish; in fact, to keep it manageable, I am going to answer five at a time.

Here we go! If you were involved in any of these, feel free to add facts or correct my memory. I’m in search of photographic evidence, so check back for that.

1. Started your own blog – Why, yes… yes, I have. In fact, starting blogs seems to be my modus operandi. I started my first blog (Breathe. Release. Repeat.) when I first got diagnosed with MS, to help me simplify my life. It transmogrified into my next blog (Lighten Up!) as I decided to let go of more and more things. I merged these into my third blog (Get Started…Go!), which was my attempt to kickstart myself into getting stuff done. (Let’s not even think about all the blogs I have started and then deleted without ever posting, just because I didn’t like the name, or the ones that only saw two or three posts before going down in flames.) See? I’m an excellent blog-starter. This one, however, is a keeper.

2. Slept under the stars – I’ve done this, but the only time I can really remember was back at our old house in Tualatin. It was insanely hot (as it gets in July/August here in Portland) and we didn’t have A/C. We took little Quinland and slept on unzipped sleeping bags in our backyard. Mind you, we lived on a corner lot with a little waist-high fence, so it wasn’t all that private, but it was definitely cooler than sleeping in the house… in both senses of the word.

3. Played in a band – Do you mean played in the band? As in the high school marching band? Or the high school symphonic band? Then yes, I most certainly did. Band-o. Band Geek. Flute player, and not a particularly dedicated one, at that. Other people took private lessons and spent time striving to be First Chair; I spent my time hanging out with friends and ogling the cute drummers.

4. Visited Hawaii – Guess what?! I visited Hawaii with the band! Funny how those things showed up right next to each other. It was my freshman year. We earned money by selling candy bars and doing a 50-mile bike-a-thon. We went to Honolulu, Kona, and Hilo. Our band director did the hula at a luau. The best thing? I was there with two of my closest friends, Amy and Karisa. The worst thing? Karisa and I had a falling out right at the end of the trip. It was almost certainly my fault (though I didn’t know it at the time), and it ruined one of the most wonderful friendships I’ve ever had. I still regret that, thirty-two years later.

5. Watched a meteor shower 
– This may be the most recent one on the list. We saw a meteor shower in August 2011, in my husband David’s sister Lynette’s boyfriend Joe’s mom and dad’s backyard.

Off to a great start – I’m 5 for 5. Stay tuned for more…

our little family

We have only had professional photos taken of the three of us twice.  The first time was way back in 2001, when Q Magoo was a cute little two-year-old. (I wanted us all to be dressed alike. David probably thought this was absurd, but he was a good sport.)

I had originally meant to have the portrait taken for our 2000 Christmas card, but I put it off so long that I had to throw that idea out the window. We ended up having the studio print the cards with “Happy Easter” on them, and I sent out Easter cards instead of belated Christmas cards. (I mean… I meant to do it, so that our card didn’t get lost in the holiday shuffle. Yeah, that’s right.)

It’s high time we did this again. I don’t think I could ever get us all to dress alike, unless we all wear plaid cargo shorts, band t-shirts, and hoodies.

Actually, that would be all kinds of awesome. I need to get that on the calendar.