Wow

The other day Mark and I were talking--I don't even remember about what in particular--but at some point I said something out loud that I never had before. It hit me like a ton of bricks. It's wasn't anything that I didn't already know in my mind. It wasn't anything that isn't totally clear to me. But I had never said it out loud.

I said to him, "I will never get better."

It seems insignificant, but once I said it, it was like a total epiphany. The realization that short of a cure, this is the rest of my life. No going back to who I once was. No turning back the clock. No regaining what has been lost.

Bit by bit, I have tried to digest each frustrating piece of this journey--loss of hearing in one ear, fatigue, seizures, cognitive difficulties, depression, the start of hearing loss in both ears. (Geesh, it's a lot more depressing when you list it out like that.) Anywho, with each knock, I have willed myself to get back up and drive forward. What choice do I have? It's never going to change. And I'm never going to get better.

So there it is. I've named it, spoken it, owned it. I guess the only thing I can do now is keep pushing, keep praying, try new adventures, and have fun. After all, who knows what tomorrow will bring?

Dear Lance,

For the past couple of weeks, I've been taking a hydrorider class at my gym. For anyone who doesn't know what that is, it's basically a spinning class in the water. As in more difficult than on land--and much easier on the butt. Or as I like to think of it, a wet Tour de France. There are imaginary hills, brutal conditions, like when the water is cold, and constant distractions. It's not easy. And often when I'm pedaling away, I think of Lance Armstrong and his fall from grace. I think of what I would say to him if I ever got a chance--cyclist to cyclist.

Lance, I want you to know that I get it. I get the draw to gain that extra edge. Cycling--on land and in water--is competitive. I want to beat the three other women in my hydrorider class everytime we drop those bikes into the water. But I would be doing myself and the sport of hydroriding (I guess that's what you call it) a disservice if I gave into that urge. Sure, I could easily hit the 'roids and hover longer or pedal all the while I'm working those foam dumbells in the water for a kickass upper body workout, but I'd only be cheating myself. I've had some of the ladies in the locker room push me to do some blood doping, but when you're gifted with natural talent and drive like you and I are, Lance, it doesn't make sense to risk it all.

It makes me sad that you couldn't see that. So I ride on with a heavy heart and the knowledge that as of right now you and I have the same number of Tour de France wins. See you on the bike.

I'm Checking Out

This weekend, I will be going camping with my son and his Boy Scout troop. OK, technically, he's not a Boy Scout yet. He's what they call a Senior Webelo, though I still don't understand why they chose that name. It makes no sense when all the rest of the Cub Scouts are animals. But I digress.

For most people, camping with a bunch of fifth graders probably sounds like being sent to hell overnight just for a preview. But something about coming unplugged and checking out from the everyday world--even for one night--sounds like exactly what I need right now.

So I'm channeling my inner-Thoreau and heading to the woods. Granted, we will be bunking in an indoor cabin with a fireplace. And the boys will be preparing all the meals, which is both a blessing and a curse. It's a blessing in that I don't have to do it, a curse in that the risk of food poisoning greatly increases.

Despite those perks, it's still camping nonetheless. I mean I will, after all, be sleeping in a sleeping bag on a platform and doing outdoorsy type stuff. But that's OK. Right now, it all sounds like a little bit of heaven. Even if I have to walk through parts of hell to get there.

My Foam Roller and Me

You know how you always hear those stories on shows like Intervention about how the person just tried...whatever...to see what it was like. Then they did it again...and again...and again. Soon they're hiding their activities behind closed doors as they spiral down into addiction. Well, I kind of know how they feel, because, you see, I've become addicted to my foam roller.

Oh, it started off innocently enough. My friend Krista told me to try it when we were at the gym. Succumbing to her peer pressure, I gave in. It was nice, rolled out the kinks and tight muscles, but nothing great. I thought it would end there. But the next time I was at the gym I tried it again. Wow, it really did relieve all the aches and pains. Pretty soon I was ending each workout by using the foam roller. It was becoming my reason for going to the gym in the first place. I'll run--if I get to use the foam roller when I'm done, I would tell myself. One more mile and you can have another five minutes of alone time with the foam roller, I'd rationalize.


At home, I gushed about the magic foam roller. So much so that Mark and the kids bought me one. I hoarded it. I kept it from the kids. Before long, I was using it at the gym and at home...more than once a day. But as hard as I tried to keep my obsession under wraps, the harder it became. From the amount of time I was spending at the gym, my family thought I was training for the Ironman--and I would have if I knew I got to use my foam roller at the end.

When I hit rock bottom, I was using the foam roller multiple times a day. I rationalized my use by pointing out how good it was for  me. And, anyway, it's not like I was using one like this one. That would just be weird.

And why shouldn't I use one? According to the one website touting the rollers, they "are inexpensive, yet highly effective tools that relieve soft tissue pain and muscle pain. Athletes often use them to break up scar tissue and painful adhesions that develop after years of workouts. Using foam rollers is similar to getting a massage from a bodywork professional, but you can use the rollers on your own at home or in a gym." I'm sold.

So if you're looking for me at the gym, go ahead and scan the machines. Chances are I won't be there. I'll be wherever the foam rollers are.

Eat my Dust, Dora

You know how Dora and her monkey-friend Boots always go on adventures? (Which makes me question her parent's abilities to raise their child, but I digress.)

Well, just like Dora and Boots, Mark and I have decided to go on an adventure. The only difference is that my head's not oval and he's not a monkey. But we are probably going to have to cross a bridge, scale something and follow a map--not a singing one, just a regular old map.

You see, we're going to take on Disney's Expedition Everest Challenge this May. It's a 5K race with challenges along the course, and a scavenger hunt at the end of the race. Sounds very Dora the Explorer-y doesn't it?

Granted, a 5K--even with challenges--seems a bit of a step down from our half marathon last year. So to make up for that, we have decided that our goal is to run the entire thing. Maybe that will happen, maybe it won't. But it's sure going to be fun trying.

As for costumes, now that I think about it, maybe Dora is the way to go. I totally could see me running in her cute orange shorts and pink t-shirt. The backpack could be a bit troublesome, but I'm sure I can work it out. Mark can wear a monkey hat. After wearing a tutu last year, I'm sure he'd consider it a step up.

A Christmas Letter to Myself

Hey you. Yeah, you...Susan. I saw you last night when you were trying to wrap those presents and you lost it because Riley ripped the paper. Yeah, I saw your expression and the way you snatched the present back. Not cool. I also saw the look in Riley's eyes. The one that said, "I didn't try to rip it. It was an accident." But you probably didn't see that because you were too busy huffing and cutting a new piece of wrapping paper.

Well, now that you're calmed down I want to tell you something. It doesn't matter. It doesn't matter how your presents are wrapped. In fact, I would venture to say it doesn't even matter if they are. It doesn't matter that you didn't make any cookies, or get your Christmas card out before Christmas. I know you think it does, but it really doesn't.

Christmas will still come. You will still be surrounded by the people you love, and who matter most to you. You will be able to hug them, and tell them how much they mean to you--regardless of whether or not you gave them cookies.

So, please, slow down, quit freaking out and take a breath. You'll be fine. Everything will be fine, and just as it should be--whether you believe that or not. But I hope you do. And I hope you have a very Merry Christmas.

The Truth, The Whole Truth, and Nothing but the Truth

When I started this blog, I wanted it to be an honest and open look at life with a chronic illness. And I have tried to stick with that. And while I try my best to stay positive, it's not all sunshine and puppy dogs. So that leads me to this post.


Recently, some of my friends started taking part in something they call Tell the Truth Tuesday. It is a day when you reveal some truth that you wouldn't normally share. Inspired by their idea, I decided to run with the idea concerning my MS. So, here are my truths:

I am terrified.

I worry people think I talk too much about my disease, so I keep a lot inside.

It frustrates me that I can't make people understand the difference between being tired and fatigue. They are completely different.

I hate the fact that I can't be spontaneous anymore, and have to plan every day meticulously so I have enough energy to make it to bedtime.

I'm tired of people lecturing me about drinking too much pop when the caffeine is sometimes the only way I can make it through the day.

I want to be able to enjoy a long, hot bath, or a soak in a hot tub, like I used to, without my face going numb and my symptoms flaring up.

I feel guilty because my husband never bargained for this. My kids didn't either.

I wish I could be the mom that I always dreamed I'd be--active, high energy, on the ball, able to juggle a lot of things at once.

I feel stupid when I forget things, or can't find the right words, and people look at me like I'm the biggest flake in the world.

There is not a minute of a day that I don't think/worry about this disease.

I work really, really, really hard at trying to not let this drag me down.Some days it's just too hard, though.

I'm tired of sticking a needle into myself--especially my stomach--and how it's starting to make me look.

It's hard for me to remember the last time I didn't feel like crap.

I want to be stronger than this disease. I want to be one of those people who sees their illness as some sort of blessing. But I don't know how to get there, and that frustrates me.

Each of these represents another hurdle I have to climb--at this point, jumping hurdles seems out of the question. But I'll do it. It's just gonna take a little time. Until then, I'll just keep sharing my truth.