Multiple sclerosis, Uncategorized

Sea legs

Gimme a beat!
If there was one true thing in this world, it was that I could always beat Nick at leg wrestling. I came about this accomplishment quite naturally – through my genes, mostly. I’m from pretty hearty stock, in case you haven’t noticed. That, and the 20 years of dance probably didn’t hurt either.

I got the nickname quadzilla for obvious reasons. Twinkletoes was another moniker. My muscles were defined fairly early; at 5, I was pretty ripped in the leg area. They were, as Natalie’s legs were described to Hugh Grant the prime minister in Love, Actually, like tree trunks.

I used to be pretty self-conscious about them – they felt out of proportion with the rest of my body. But then it dawned on me just how much I could do with them, how far they could carry me. I could do toe touches and high kicks and run and run and run. They never gave out.

Ain’t it grand, just how fucking amazing our bodies are? How this clump of cells and water and tissue work in unison to let us do things like walk and dance and bike? Of course, we take that for granted. I certainly did. I stayed in serious denial until I had to be dragged to the ER because I couldn’t use my right leg anymore. It took a few months before walking felt close to normal again, where I didn’t have to actually think about my muscles going through each stage of the walking process.

When Nick began biking and I began MSing, the paradigm shifted in our wrestling matches. My lower body strength became no match for his. These days, my legs still have much of that definition from my dancing days, but they operate quite differently. It’s like I have a  case of sea legs I can’t shake.

Walking is slower, a little unsteady. Running, ha! Dancing, we’ll see.


It’s hard to wrap my head around, but this fall will be four years since my MS diagnosis. Aside from the occasional stumble (literally) and needle fatigue (yes, I’m still doing that), my disease path has taken a turn for the better. No true exacerbations for two years, which makes me want to do a happy jig.

Of course, let’s not have delusions of grandeur here – it’s still a struggle. I’m still hitting that wall of fatigue more often than I’d like. The hand numbness never quite goes away. My left leg … well, it has a mind of its own most of the time.

It’s interesting that my focus turned to my legs, but my physical health has been on my mind lately as I consider returning to my first love, dance.

It was quite unintentional, I promise, but it is a good  segue for Walk MS: Central Arkansas.

We’ll be getting together April 12 in Little Rock for the event, which is the rallying point for MS awareness in Arkansas each year. Please join us, or donate to our team, the Word Herders.

I will try to write more – this feels very rusty. It’s been a long absence, and I told myself it was because I was feeling better so I had nothing to bitch about anymore. But there’s always something I can say, or share. I hope you stick around.

Multiple sclerosis, Uncategorized

‘Mine is not a unique situation’

So said David Rakoff in the months before he died.

“Everyone loses ability. If you’re lucky, this happens over the course of a few decades. If you’re not, (meh). But the story is essentially the same.”

And he dances. A few sweeping, sentimental gestures. A rueful smile.

His grace is beyond words, although he does those quite well, too.

For those who have 15 minutes to observe a life well-lived, despite circumstances:

Multiple sclerosis, Uncategorized

Why hello, stranger

Yes, I went dormant for a couple of months.

No, I’m not falling apart.

Yes, the triple-digit heat is a tad miserable.

No, “they” won’t install misting tents every 50 feet for my convenience.

Yes, I heard about Jack Osbourne.

No, I didn’t watch his mom cry about it on The Talk. OK, maybe once.

Yes, I’ll keep blogging.

No, I can’t wait for the last Batman, either.

Yes, I got the new Fiona Apple.

No, I haven’t decided about the new Smashing Pumpkins yet.

Multiple sclerosis, Uncategorized

Strength in numbers

I have been very fortunate to have a close group of friends to see me through the rough spots with kinds words, encouragement, food and, when needed, margaritas.

I have been equally fortunate to have other friends and co-workers and erstwhile acquaintances step up to help in whatever way they can.

We may not see each other or talk every day, but I know they have my back.

Just as I know many of you will this year with the MS Walk, which incidentally falls the day before my birthday.

So, my friends, do what you can. You know I love you for it!

Multiple sclerosis, Uncategorized

Off the merry-go-round

At what age do you start thinking about being older?

At 6 when I blew out my birthday candles, I wished to be 10.

At 10, I couldn’t wait to be 12 and get pointe shoes.

At 12, all I wanted to be was 18.

At 18, I longed to be 21, of course.

But by 30, when you feel like you know yourself and are a bit more grounded, you aren’t thinking about getting older. If you’re like me, you were wrapped up in moment after fleeting moment, on a dizzying merry-go-round as all of the events blur by, some muted, but the big stuff bursting in Technicolor. You live for the present. Or at least I did, being the proverbial grasshopper.

At 30, I felt that I had hit my stride and that all the pieces were falling into place. I was enjoying the spinning world, and didn’t give a passing thought to growing old.

Retirement? Pssh. I have plenty of time to plan for that. Having a family? We’ll get around to it. The most planning I did was where to go for a weekend getaway.

Oh, how foolish I was. Three years later, and the future is nearly all-consuming. Now that I’m “grown up,” the thought of aging terrifies me. Not for the typical reasons. Or maybe it’s those and more.

When do you start thinking about getting old?

In some ways, I feel like I’ve aged 16 years in these 16 quick months. Incidentally, Google thinks I am a 55- to 64- year-old woman.

We should be in our prime, Nick says.

Thirty-three, and my body is fighting but frail. Where is that elusive fountain to keep me young?

Having MS has made me confront age a lot faster than I had imagined I would.

Off the merry-go-round and onto the porch swing. Maybe it’s not such a bad trade.

Multiple sclerosis, Uncategorized

The good kind of pain

I empathize, little kids of the world – shots are no fun. They make me want to cry, too.

For the past 16 months, I’ve had a regimen of injections. I’ve been hooked up to IVs, shoved into scary tubes, endured post-shot reactions that are said to feel like a heart attack.

And yet … I’m most terrified by this latest treatment. The needle is HUGE. And there is no auto injector that takes care of the hardest part, the actual getting the needle in the body.

But I’ve already paid for the treatment, and this flare-up has dug in its heels – going on Week 4.

So scary shot it is. Two weeks of it. Waaaaaaaah!

On a much happier note, there are big things on the horizon – a conference (more on that later), a trip to DC, and the MS Walk, which I will be doing this year with a dear friend.

Also, I’ve started a blog at work on health and fitness, the idea being that a lot of people out there are in a similar boat as me, ie, not really in shape but motivated to lead a healthier lifestyle. Visit it at

There is another big thing in the works, something I’m very excited about. It’s in the nascent stage, just a germ of an idea that I hope gets fleshed out soon.

So if I had to choose a theme word for this month, it would be endure. Because life as we know it is challenging, beautiful, frustrating, and sublime, and I want to plow through the tough while still enjoying the good.

And there is so much good (except for shots).

Multiple sclerosis, Uncategorized

Feeling pretty

I got a haircut the other day for almost the sole purpose of having someone else wash and blow dry my hair.

It’s been awhile for that type of pampering. Yes, the simple act of fixing my hair has become so frustratingly tedious that I haven’t really bothered.

Same goes for makeup. The ragmuffin look is in, though, right? Because I am street urchin all the way. Well, half the way. I bathe and eat regularly.

Used to be when I was sick I would make the extra effort to at least look well. Otherwise, you get the pitying looks.

But lately, vanity has taken a back seat. Just normal maintenance is overwhelming enough, why try to pretty it up?

I could jab an eye out with the mascara wand. Or worse.

Multiple sclerosis, Uncategorized

Enough about me

I’m sure I’ve complained enough on here about this recent relapse. Long story short: Yep, still having it. Yep, still bad. Very bad. Yep, still using my right hand for everything (use your imagination there). Because the steroids were a bust this time, it looks like I will be trying another drug, whose name almost certainly came from a Tolkien story.

Unless you are some mean-spirited hater who derives immense, sicko satisfaction out of my current condition, I’m guessing it’s safe to say you are as tired about reading about my flare-up as I am tired of having it.

Which all seems like a rather self-serving introduction to get to the marrow of this post: Dan and Jennifer Digmann.

They were among the first to reach out to after my diagnosis. Nevermind that they are hundreds of miles north of me — we’re all a click away nowadays.

They are a married couple living with MS. Both. of. them.

Let that sink in for a bit. I had to.

Together they write a terrific blog, and recently, they published a book of essays called Despite MS, to Spite MS. I love to read, especially non-fiction. I’ve had gotten into MS autobiographies, which left me saddened in many ways. So when I got the Digmanns’ book, I was a little hesitant to start it, if only because I had MS fatigue (the abstract one,  not the real kind).

I shouldn’t have worried.

Dan and Jennifer elevate the everyday essay into something more. They have risen to challenge of life with MS with uncommon grace. Whether coming to the realization that she’s “more than kind of disabled” or figuring out the fine art of “shooting himself,” the Digmanns relate the story of their MS journey through clear eyes that never dwell in self-pity land.

For their advocacy, support and inspiration, I am grateful.

Here’s wishing them all the more strength for the road ahead as they lead the charge. And here’s hoping for our shared future of a world free of MS!



Multiple sclerosis, Uncategorized

The enemy

Today it takes many forms:

Buttons and zippers (are sweatpants considered business casual?)


Graphological apparati (watch the video below)

Stairs (had to find that out the not-so-easy way)

Plastic baggies

Anything that requires manual dexterity

Good thing I have:

Friends who are always willing to pitch in


A phone

No modesty

Rather substantial hindquarters (the fall down aforementioned stairs)

A sense of humor

3 dates with the nice lady who will give me steroid infusions

So see, even when I’m losing I win.