A Bittersweet Anniversary

Exactly twelve years ago I was in Lyon, France. I was researching a novel I was writing and was in the throes of the flare that would land me a MS diagnosis a few weeks later. My legs felt like lead, I could only walk a hundred feet or so before I needed to rest, my left leg was numb and the right side of my face - including half my tongue - was numb.


It was a struggle. I had no idea what was wrong with me, it was cold and rainy and I was staying at a hostel in vieux Lyon, halfway up the hill to Fourvieres Basilica. Because I could barely walk I missed out on a lot - no Resistance Museum or historical traboules, no day trips to nearby wineries - but it was a spectacular trip, partly because Lyon is awesome, but mostly because it was the last of my many travels made before my MS diagnosis. I've traveled since then, and have plans to travel more, but that was the last trip when I was unaware that my myelin was disintegrating.


If I had known then what I know now I would have toughed it out and dragged my lead leg up the traboules shelled out the extra cash to take a cab to museums instead of putting that stuff off for another trip "when I feel better," but hindsight's a bitch and it would have been a waste of the past twelve years beating myself up for not anticipating my MS diagnosis or its effects on, well everything, but mostly on travel.


As I(very belatedly) come to grips with the fact that I am really, truly disabled, I need to silence the voice in the back of my head that says "put this on the list of things to do when I'm cured," and do what I've gotta do. Because, and I don't care how unrealistic this sounds, I don't want to have to adjust my expectations. And, as I finally get around to finishing that novel I started all those years ago, I can daydream about going back to Lyon. It may require extra planning and I may need Hubs' help, but I refuse to give up on my dream of going back, or of going to the million other places I hope to visit in my lifetime.


So take that, MS!

One Step Foward

My leg is healing at slower than a snail's pace. My most recent X-ray, taken a week ago, still shows an angry break clear across my tibia, flanked by dainty little spirals extending toward my knee and my ankle. 

My doc sighed and shrugged his shoulders before declaring it "acceptable." So now, after some annoying obstacles from cast to splint to brace, my right leg now resembles that of a Storm Trooper. 

It's an improvement on the cast for sure. It's daintiness, however, revealing some shocking skin that had previously been hidden by the cast. My thigh is peeling like I suffered the world's worst sunburn and my foot... Oh my foot. My foot, still swollen and sausagey(like my leg) is shedding what appears to be shards of Parmesan. No matter how much I scrub it moisturize I just keep sloughing off continent sized chunks of my foot.

Man I miss pedicures, and proper showers, and all things involved in, well, grooming. 

MS Is Hazardous To Your Health

I broke my leg. Or, more to the point, MS broke my leg. I was transferring(blerg. That's something old people and cripples do) from the toilet to my scooter aaannnnd... pop. 

An ambulance was called, my dignity was lost and my favorite pair of jeans was ruined(they had to cut them off). 

The nurse in the ER actually said they get a fair amount of MSers in with broken bones. Serves me right for ignoring my physical therapist when he expressed concern about me falling.

"I'm good at falling," I said. "What's there to worry about?"

Anyhoo, despite being mostly bed-bound during a super busy time - both of my boys starting school, all the back-to-school stuff and hubbub - we have managed pretty well. Hubs, who has always been an angel, has really outdone himself with the cooking, cleaning, boy chauffeuring, helping me out ON TOP of his demanding job. 

How did I get so lucky? Because, really, I am super lucky.

Super lucky, but my leg does hurt.

I Am Not So Smart

A few months ago I resolved to exercise my sad, immobile body a bit - some stretching, maybe a few wobbly steps behind the rollator and, most importantly, some time on the stationary bike. 

For months now my sweet hubs has helped me onto the bike in the hopes that we might get some blood pumping through my legs. And for months I've been wanting to cry at how difficult it is to pedal the stupid pedals. 

"My legs are totally screwed," I've been thinking. But still, get up on that bike and move as much as I can, only lasting a minute or so. 

Sad, right? Well last night, as I was panting after biking only a tenth of a mile, Hubs noticed that the bike was on the toughest setting. Seriously

It's a small victory, but I'll take it

Coming Out

Hi, I'm Aitch and I have some stuff to get off my chest.


First, I've lived. I've lived a lot. I've visited close to thirty countries, lived in five countries, got a BA and a MA from two kick ass universities, danced on bars, slept on beaches, made out with loooott of guys, married the greatest guy and gave birth to the two greatest kids. I have never been one to not live life to the fullest.


Until recently, that is. See, I'm disabled. Completely, absolutely, no way to hide it - disabled. I can't walk, I often require my husband's help into or out of the shower, sometimes my legs won't bend and my muscle relaxers don't work so I have to wake him up to roll me over in bed at night, I'm starting to get a hump on my back because my once perfect posture has been felled by a lack of core strength, I can barely write anymore because I'm right handed and my right side is my bad side, and I am always, always, always  worried about pissing my pants. I own a cane, a walker, a wheelchair and a scooter.


I'm forty years old. Not eighty, not ninety, not 102. Forty. Forty years old and my mom, who also has MS, can run circles around me. I am, if not the worst case scenario, definitely a warning or bogeyman for others with MS.


It sucks, but there it is. I've put it out there, now on with the rest of my life.

Disability Is Expensive

Not that that needed to be said, but it is really, painfully pricey being disabled. And I'm not just talking about doctor's and hospital bills; ordinary, everyday things come with an additional expense - a cripple tax, if you will. Dispiriting and tear-inducing for me, downright prohibitive for most. It sucks.


What brought this post on was the need to adapt my ALREADY adapted minivan. I call my minivan Tom, but that's beside the point. Tom's got a handy dandy ramp, but now that my stupid right leg is essentially useless I decided to get hand controls put in as well.


I was trained to use hand controls before Christmas by a lovely guy, took my van in last week for the modifications and... and... it's just been a cascade of humiliation and cash hemorrhaging ever since. As if being (relatively) young and needing a hand control to drive your ramp van wasn't bad enough, there's been much discussion amongst the gimpy gear hawkers about the best model of hand control for me. The one we agreed on, that I was measured for, won't fit in Tom. There are other options, but there won't be any room for me to shimmy from my scooter to the seat. Again, I was measured for all of this so it should have been sorted out.


So after much back and forth and much of being called "dear" by the receptionist at the cripple emporium, it's been decided that, along with all the other modifications made to Tom, I need a "transfer seat." And it will cost an extra $3000 for it.


I hate this.

An Homage To My Scooter