In Search of Slogans

So when I took part in the breast cancer walk a few weekends ago in honor of my awesome sister-in-law, I noticed quite a few catchy slogans concerning breast cancer. I'm sure you've seen some of them:
"Save the Ta Tas."
"Hell, yes, they're fake. The real ones tried to kill me."
"Squeeze a boob. Save a life."
"I'm here for the boobs."
"Walkers for Knockers."
"Saving Second Base."
 And the list goes on and on.

So, I thought, why not make up some of my own catchy slogans for MS. I can develop them now and present them at the next MS walk. It can't be that difficult, right? So, here we go:

"Save the Myelin!" What? Not the same punch as Ta Tas?

O.K., well how about, "Hell, yes, I'm on immunosuppressants. The lesions are affecting my body's ability to transmit nerve signals." Won't fit on a shirt? All righty, then. Hope 'bout this?

"Get an MRI. Maybe diagnose MS." Hmm, not real catchy.

"I'm here for the brains." And I wonder why we can't get as much attention.

"Walkers for nerve endings" No? "Walkers for brains?" That's kind of creepy, isn't it?

OK, OK, OK, I got it. How about "Saving home plate." See, cause home plate is kinda like the brain of the baseball field. It's where all the action takes place and everything. Get it? Oh, nevermind.

Wait, I have an idea!!!! Orange is the color of MS awareness, right? Well, how about "Orange you glad you don't have MS?" Perfect, right?

Fine.  If you don't like any of my ideas, I dare you to come up with your own. Those breast cancer people have a lot of money and probably someone whose job it is to sit and make up their catchy slogans. I don't.

Watch Your Words

The other morning I stopped at the local gas station to get myself a fountain Pepsi. The workers there and I are familiar, but nothing deeper than a gas station/customer kind of relationship. As I was filling up my cup, one of the workers looked at me and asked if I was having another?

Another what? I thought. Another drink? Is my caffeine addiction that well known?

And then I saw her look at my stomach and it clicked. This is the same gas station at which I sometimes stopped during my last pregnancy.--Yes for Pepsi. Don't judge. But back to the story at hand.--Oh, O.K. She thinks I'm pregnant again. Awkward.

No, I answered as politely as I could, expecting a profuse apology in reply. Nope. Crickets. All righty then. I grabbed my drink and beelined for the register.

I guess I shouldn't be surprised. It's not the first time I've had someone say something inappropriate to me. And I'm quite certain it won't be the last. It happens all the time concerning my MS. Usually I can roll with it. But there are sometimes I wish people would stop and take a moment to think before they speak.

Here are just some of the things I've had said to me:

* "At least it's not cancer." No. No, it's not. And for that I'm grateful. But it still sucks.

* "Must be nice to be able to take a nap during the day." I wish I didn't have to. But, having said that, maybe you should try it. Doctors recommend it.

* "You don't look sick." Why thank you. I feel like shit.

* "There is a reason for this." Really? If you find out what that is, could you please share it with me? Because so far I've gotten no message from God.

There are many more, but I won't bore you. So instead, I leave you with this: Please don't start any rumors. I'm not pregnant, apparently just fat. Thanks for noticing, Mrs. Gas Station Store worker. It certainly made my day. Not.

So Much for Swimsuit Modeling

The other day I ran my hand over my arm and noticed something I hadn't paid attention to before. On the backside of both of my arms, where I used to do my injections before they became too painful, were tiny little dents. They didn't hurt, but I certainly could feel them.

Then I checked my stomach, thighs, and hips. Yep, yep and yep. I remember the nurse who came to teach he how to administer my shots mentioning something about lipoatrophy. Because it's such a weird word, I didn't bother listening or looking it up at the time. I was kinda more concerned/interested in the whole injecting myself with a needle thing. Silly me.

Well, since then I've learned exactly what lipoatrophy means. It means the destruction of fat cells in localized areas where the medicine has been injected. Destruction of fat cells? Woohoo! Oh, wait. What? When the fat cells are destroyed they leave a crater behind in the skin and underlying tissues. And it's permanent? Crap.

So, O.K., let me see if I understand this correctly. I have lesions on my brain. I have seizures. I never know when or where this disease is going to pop up. I take this medicine to try to counter all those things and now it's going to leave craters all over my body? What the hell?

And no matter what I do they will never go away? So I will never have a swimsuit modeling career? Or wear sleeveless tops? Or rock belly-baring midriffs? Oh. Wonderful. Good to know.

But that's O.K. Maybe swimsuits are out, but certainly there's gotta be a niche market for turtleneck and high rise jeans models, right? If so, me and my lipoatrophy are all over it.

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.