After fourteen years with too numerous to count misdiagnoses, this is my daily journey living with an unknown disease that has made me fully physically dependent, living by the help from my family, friends, and beloved service dog. It is how I have chosen to define myself to remain whole in spite of it.

In Need: A Dose of Christmas Cheer

In Need: A Dose of Christmas Cheer

Since the first couple of years of being sick, I always wanted to turn my wheelchair into a “sleigh.” I thought it would be fun. (As an added bonus, I would order everyone about, being the representative of Santa, naturally.) Think cardboard derby car outward aesthetic around a wheel chair. Nothing super elaborate; simply fabulous.

While my family, friends, and caregivers all thought this was a great idea, no one was willing to implement  it. Now, thanks to social media, my sister sends me videos of people who have done that for their own kids in wheelchairs. “Look—that’s what you always wanted," she comments. Somehow, video sharing, isn’t the same thing. C’est-la-vie.

This Christmas season, I have been seriously lacking my Christmas cheer. With Christmas practically here and no presents wrapped, several still need to be found, (or thought of), my lack of enthusiasm has become quite problematic. Frankly, I am aghast at where all the time has gone.

I am a hands-on, take action, fix the problem, type person. And, I think, attitude is both choice (requiring initiative) and effect, (being a result of something). Thus, I have been pondering an actionable solution to get me in a jollier mood in time for Christmas. Not that I think there is anything wrong with being the Grinch at Christmas. It’s just that my family would, in short, would not tolerate it. Or worse, they might even look sympathetic with understanding. Which I do not tolerate.

I have had a lot of time in the last ten days to consider the problem, as a recent spout of episodes left me bed bound. Generally, their powers include swelling in my right arm, bringing me a fever, horrific head and joint pain, diarrhea, and severe dry mouth and appetite changes—all within a matter of minutes. Oh, and it leaves my speech at best slurred, and at worst indiscernible. (If you’re wondering, of course doctors have no idea what is actually happening. The most life threatening stuff has been ruled out. Theories abound, but again, without a diagnosis, there is nothing we can do during one.)


It is, in short, annoying. When I am at the mercy of an episode and trying hard to regain my equilibrium-sometimes from several hours to days, it traps me most in my head.

Which, is well, like being trapped in a tunnel with both the tortoise and the hare, swimming through a lake of peanut butter, forging against gale force winds laced with honey, and trecking through a forest full of sticky marshmallows…See? I have been having a lot of time on my hands.

Which brings me back to my lack of Christmas cheer problem.

My solution: a Christmas cheer card, my style.

This year, however, I have a tank chair. And Camelot, my super-hero white poodle service dog, who can guide me through any storm, (see the Rudolph-red nose reference?), and a fabulous red scarf. Voila! A dose of exuberance and Christmas cheer is being received!


Who needs a sleigh?

Merry Christmas!

One Way to Start the Year -- Out of Order

One Way to Start the Year -- Out of Order

Hope

Hope