MS Hurts

When I started this blog, one of the things I wanted to do was try to help people understand what having MS means. Well, this is one of those moments. As an aside, please don't think I write any of this to get attention or sympathy. I don't. I write this blog because if I have to be stuck with this disease, I want to help people understand it.

Today we're going to talk about neuropathic pain. Don't know what that is? Well in my case, think of your worst earache ever. Now, think of your worst toothache ever. But don't stop there. Think about the worst headache you had ever. Now put them all together and you can start to understand neuropathic pain. Mine is on the right side of my head. For some people it occurs in other places. Remember, there is no one-size-fits all case of MS.

In the reading I've done about this--God, I've done a lot of reading about all things MS--it is sometimes likened to the phantom pain that people who lose limbs experience. According to the National MS Society, 55% of people with MS had “clinically significant pain” at some time. Almost half (48%) were troubled by chronic pain.

The pain comes from the dymelination of the nerves. Signals get all confused, freak out and send out pain signals. So why am I telling you this? Well, I just want people to be aware of what's sometimes going on beneath the surface--the pain and symptoms no one can see. And so that you don't look at me weird when you see me pulling my hair--yes, it actually helps, pushing my head against a hard surface--yes, that also helps, or digging my fingernails into my scalp to the point where I have scratches--yep, you guessed it, it helps my head feel better. Weird, I know, but it works.

To quote the great Paul Harvey: Now you know the rest of the story.....

Yogi Say What?

I've always wanted to get into yoga. It always looks so relaxing, and, well, slow...and mostly on the ground. My kind of non-overly exertive exercise. Plus, as an added bonus, my neurologist and all the MS literature says it's very good for people like me.

So I took off one recent Sunday for an hour-long yoga class at the gym. I thought about bringing my yoga mat that Mark had gotten as a film promo when he worked at the theater, but decided against it because it had a big picture of Mike Myers on it from his movie The Love Guru. Probably not the first impression I want to make with my fellow yoga-ites? Yogians? Whatever.

Now you may all remember the debacle the last time I tried to attend this yoga class. You remember, the teacher was sick, someone else came to teach and tortured us for an hour with very non-yoga moves. Yeah, I'm still working through that experience.

Anywho, I arrived at class, grabbed a mat and sat down. One by one the rest of the class began trickling in. They glared at me before laying out their own personal yoga mats. They began bending in unnatural stretching poses. Still they glared. Maybe it was because I left my socks on, I thought. So I took them off. More glaring. Then I noticed they all had some sort of foamy brick thing that I forgot to grab on my way into class. Maybe that was it. Suddenly I had flashbacks to the only other time I had attempted to integrate an obviously established class. I was almost drowned by old women.

But I was here for yoga. To relax, to stretch out my sore muscles. So I took my place. The instructor came over to my mat.

"You're new here, aren't you?"

"Yes," I said quietly, hearing in my head the old westerns where the townsfolk greet a stranger with "You're new around these parts, aren't ya?"

"OK, just try to follow along and let me know if you have any questions."

Thanks for the info, teacher, but I got this, I thought. And then we started.

Namaste, she said. Oh, I know that. I've heard that before. It's something like "Hi" or "Welcome, I'm glad you're here" or something along those lines.

And then it all fell apart. Suddenly my fellow Yoginis started moving each time the teacher called out the pose. The only problem was, she was speaking Yoganese or something. Words like Bhujangasana, Chaturanga, and Anjaneyasana started coming from the instructors mouth. I had no clue what she was saying, but the other class members apparently all spoke Yoganese like her and followed right along.

I tried to keep up and cheat off my neighbor, all the while trying to maintain my balance. It was not a pretty sight. I lost count of how many times the instructor approached my mat to tell me how I was doing it wrong. I resisted the urge to say, "Speak English and maybe I could do it!"

Finally, after an hour, my humiliation was over. I collected my shoes, water bottle and purse and headed for the door. On my way to escape, the teacher approached me, thanked me for coming and bid me adieu with a namaste. Back at ya, I said, and headed out the door.

In Search of Peace

Have you ever seen the movie Groundhog Day with Bill Murray? I love that movie. Lately, I feel like I'm living that movie.

In the film, every day Bill Murray wakes up to find that it's the same day--literally. Whatever he did the day before has been erased. The slate has been wiped clean. I kinda know that feeling.

Last night I ran 1.5 miles. Today it was hard for me to walk up the stairs at work because my legs felt like lead. Last night I went to bed at 9. This morning I woke up more tired than when I went to bed. Five steps forward, 10 steps back.

When this happens, I wonder: Is this what the rest of my life is going to be like? Pushing forward only to immediately feel like I've been pulled back to where I started?

Someone asked me once what I desired the most when it came to this road I'm on. Of course the obvious answer would be to find a cure, but outside of that, I said, I just want peace. Peace in the belief that there is a reason God chose me. Peace with the realization that I am strong enough to take this journey. Peace with leaving behind the me I used to know and peace with the me I am becoming. I'm not there. I'm not sure when I'll get there, or how. But I'm trying.

God and I have had some serious talks about this process. I mean ugly, "I hate you," "you're the worst father ever" red eyes, runny snot kind of talks. I'm pretty sure he's OK with it. At least I hope he is. We always seem to make up. I ask him if this peace thing will ever come. Unfortunately, he hasn't answered me yet. Other times I wonder if I'm already there and it just doesn't look or feel like I thought it would. Either way, my journey continues, my search continues; my search for peace.

My Blank Baby Book

The other day my mom brought over my baby book. Inside the front cover was the newspaper clipping announcing my birth. The rest of the book was blank. What with being the third kid and all, I understand how filling out "firsts" becomes harder and harder. I see it with my own kids.

When I first saw it, my mom and I laughed. We joked about the empty pages. My dad said he couldn't believe she even gave it to me.

But later after they had left, I opened the book again. I was struck not by a feeling of woe is me, but of the bigger significance of the empty book. The yellowed birth announcement tucked inside the cover said "Here I am." The empty pages that followed said the possibilities for what comes next are endless. Those blank pages said to me: "Your life is yours to define. You get to decide how to fill this book of your life." I will not be defined by when I talked or walked. The fact that I wasn't potty trained by a certain age is insignificant.

It actually was a pretty powerful moment for me. Not one I'm sure my mom expected.

The fact that she gave it to me shortly after my 40th birthday, when I've done a whole lot of talking about re-inventing myself, wasn't lost on me. So here we go, no looking back. Moving forward, my book is empty and ready to be filled.

We Interrupt This Programming...

To bring you the following rant:

I woke up this morning feeling, like, well crap. That's not unusual. Most mornings are like that. In fact, most days are like that. If you asked me the last time I felt good, I'm not sure I could answer that. I don't like it. I don't like anything about the way things are going these days with this damn disease. I'm confused, I'm frustrated. No, quite frankly, I'm pissed. From the get go I understood that MS was a tricky disease. Everyone is different. No two cases are alike. Sure, there are similarities, but for the most part your reality will not be the same as the person standing next to you with the same disease.

So what that means is there are no easy, one-size-fits-all answers...for anything. So getting a read on what I'm supposed to do to try and not feel like I've been hit by a truck everyday has proven challenging. To give you an idea what I'm up against, this is kinda how it goes on a pretty regular basis.

Doctor: Take this medicine to battle fatigue and wake your brain up.
Me: Sounds good.
Doctor: Now take this one to sloooow your brain down to prevent seizures.
Me: Um, OK?

Experts: Cut down on caffeine.
Me: Check.
Same experts: Drink caffeine to fight the fatigue.
Me: Huh?

Every piece of MS literature: Exercise.
Me: Check.
Same literature: Rest.
Me: Um, but you just said....

Experts: Get enough sleep.
Me: Yes!
Same #***ing experts: But not too much.
Me: GRRRRRR

So you kinda get the idea. So on any given day, if I seem out of sorts, please be patient with me. I'm just busy trying to figure out what I'm supposed to be doing to make it through the day.


We now return you to your regular programming.

Things I'm Loving Right Now

In the spirit of Pinterest, and all that is good in this world, I feel I must share some of the things that I'm absolutely loving right at this moment in my life.

Danielle LaPorte is kinda my new obsession. I love her insight into life and, well, pretty much everything. This is my all-time favorite. Whenever I'm having a bad day I read it.

I love the story behind this site.


This song. And this one. And this one.

Because I'm kind of obsessed with tips and lists.

An amazing blog--and accompanying book--about keeping things in perspective.

A book I liked better than any of his others.

Lately I've been interested in stepping out of my comfort zone, tilting my head to the side to see things in a different way, and expanding my mind. That's where this site comes into play.

What are your current obsessions? If you'd like, share them with me.

One Day

One day. That's all it can take to change your life forever. One phone call. One test. One appointment. One birth. One death. One "I love you." So many moments that can change the course of our lives occur that quickly.

We often tend to think of individual days as throw aways. I'll get to it tomorrow, we say. Next week. Next year. But what if tomorrow, next week or next year were going to look completely different than today?

I remember the day I got the call--at work--telling me I had MS. 10 years later, I could tell you every detail of the call, every emotion, everything. In that one phone call, my life changed. I was not the same person I was 5 minutes before the phone rang. It happened that quick and there was nothing I could do to stop it.

I'm thinking about that today because tomorrow is the start of another school year for my kids, and I'm at work. All the other moms, it seems, have taken the day to celebrate the end of summer with their kids. I chose to come to work. I had deadlines to meet, projects due, meetings to attend. But the problem is, when I look back I'll realize that none of that mattered.

I should have been home...with my kids...hosting a full-on closing ceremonies for summer break. How many times have I pushed off that one day? That day that could have created the best memory of our lives? No, I made a huge mistake today--and so many other days. When will I learn the importance of just one day?