Is Anyone Out There?

I got an e-mail today from one of the many MS websites and blogs to which I subscribe. I guess I sign up for them in the hopes that I'll garner some gem of wisdom from them, or some insight on ways to come to peace with this whole being sick thing.

Unfortunately, I don't. All I keep seeing are stories of people who see the blessings in their disease, who have managed to find a way to take their diagnosis and turn it into a positive experience. I can't. For 10+ years I haven't been able to. I'm pissed. I'm tired--both physically and emotionally. I don't like this. I don't want to do it for the rest of my life.

Sure, I'm able to recognize the blessings in my life. I can say the things for which I'm thankful. But I just don't count my MS as one of those things.

So I wonder: What's wrong with me? Aren't there any other people out there like me? Am I the only person with MS who feels this way? If so, that sucks for me. If not, I sure wish I could hear from those people once in a while.

Susan 2.0

Guess what? I ate asparagus for the first time this weekend. To most people that may not be a big deal, but for me it was. See, I'm a very picky eater, always have been. As in, my mom used to make me something different for dinner to the protests of my sisters, picky.

So last year when I was told that I had to start daily injections for my MS, I made myself a promise. I promised that if I was going to be forced to face this challenge, I was going to create challenges of my own making. I was going to try things that I hadn't before, expand my horizons. I was going to be in charge of what I could be. That's when I signed up for the Princess Half Marathon. (You know, a half marathon is 13.1 miles, right?)

Then late last year, I had the opportunity to take on another challenge when the role of managing editor at St. Anthony Messenger came available. At first I balked at the idea. And then--after much deliberation--I accepted the challenge. Shortly after taking the job, a friend and colleague of mine commented on how I seemed to have changed. He started calling me Susan 2.0.

I liked it. I decided that moving forward I would push myself beyond my comfort zone. I would try new foods, new adventures, new challenges. So far I've completed a half marathon, a 5K and wrote a book. I let my niece cut and color my hair any way she wanted. I started trying at least one new food a month. I've had authentic Chinese food, discovered that I love sugar snap peas and cucumbers and hate Wasabi peas, Swiss cheese and asparagus. It's been fun--and challenging.

Moving forward, I'm open to suggestions for challenges, and encourage you to join me and give yourself an upgrade. It's a lot of fun.

Damn

I like to consider myself a pretty strong and flexible person. I try to roll with the punches, adapt and take things a day at a time. With this disease you have to, whether you like it or not. But sometimes it's just too much...like yesterday.

As I mentioned in a previous post, recently I've been having some funky episodes. I went to the neurologist for an EEG--from which I'm still trying to get the glue out of my hair--to try and get some answers for said episodes. Well, as I found out at my appointment, apparently there's a more technical term for those episodes. They're called seizures. This type of thing shows up in about 3 percent of people with MS. Hot damn, I'm an overachiever even with my disease.

So I start another round of drugs, which I have to titrate over the course of the next 8 weeks. Go ahead, look it up. You'll feel smarter, like I did yesterday. I'll wait.......

Oh, OK, I'll tell you. It means I have to build it up in my system. By the end of the eight weeks, I'll be taking four pills in the morning and four in the afternoon. Fun, right? Mark said he's going to get me a nice little pill box and bedazzle it for me. God love him. He always knows just how to make me smile when it's the last thing on earth I want to do.

I'm sure in time I'll adjust to this new challenge. I've done it before. But for now I'm pissed...and frustrated...and sad...and so many other things. So please be patient with me. Apparently I'm a work in progress.

Australia, Here I Come

One of my all time favorite books is Alexander and the Terrible, Horrible, No Good, Very Bad Day.If you've never read it, run out to the library and get it. It's awesome. Anyway, for the past two weeks, I feel like I've been living it.

Why? you ask. Well, mostly because the past few weeks have been, well, terrible...horrible...no good and, quite frankly, very bad. Horrible fatigue, weird episodes that I can't really explain, more than usual forgetfulness, and just a general feeling of blech.

It could be I'm simply exhausted and need to catch up on my sleep. Really, it could. You've seen how some of those actors and actresses behave when they're suffering from exhaustion. But I digress. Or it could be something wacky with my MS. Who knows? Well, probably my neurologist.

So on Monday I'll head back to the neurologist to make him earn his money.

But wait, I thought this morning, surely I can make this more challenging. And so, when I took Tigger out, I promptly launched myself down our back garden steps. As I laid there in the grass, I couldn't help but laugh. Yeah, go ahead and get that visual--crazy lady in her PJ's sprawled on the grass at 7:30 in the morning. Really?

Now I'm generally not a superstitious person, but I can assure you that I won't be asking what else could go wrong. When Alexander's week tanked he threatened to move to Australia. Not sure I can do that and make it back in time for my appointment on Monday, but it sure would be nice. Instead, I guess I'll just take my bruised and batttered self to the doctor. Stay tuned.

Why I Dislike Runners

This weekend I took part in the Redlegs Run down at Great American Ballbark. I say take part rather than run because I didn't run. I walked it with two fabulous women, and we had a blast. And then at the end, some runner guy tried to ruin it.

The whole pack of us 5K runners were heading for the finish line. "5K go left, the organizers yelled" We obliged. Then along came Mr. Runner Guy, who rudely yelled at us to get out of his way. Now I know it is customary for slower runners and walkers to go right during races. Trust me. Before the Princess Race I read all about marathons and half marathons and their protocols, lest I screw one up. BUT THEY TOLD US TO GO LEFT!

This guy's reaction was just one more of the reasons why I will never become a hardcore runner. I've heard the way a lot of "real" runners talk about us non-runners. We're in their way. If only we pushed ourselves harder. Walking isn't as strenuous as running. I've really heard all these comments.

My response to that is: so what? So I walked. I got out of bed early this weekend the same as the runners. I could have stayed in bed like I wanted to. In fact, we both got the same T-shirt. But here's something else I got, that you didn't. I got to walk with the elderly man pushing his walker. I got to walk with a mom who was not only carrying her daughter, and pushing a stroller, but she was still trying her best to jog. Those kind of people far outweigh your way faster than mine chip time.

Yeah, from my vantage point, I saw a lot more character than what I saw from the runner who chastised us for being exactly where we should have been.