Lesions – #AtoZChallenge

le·sion  /ˈlēZHən/ noun   
1. a region in an organ or tissue that has suffered damage through injury or disease
Stop me if you think that you’ve heard this one before. – Marr/Morrissey

Multiple Sclerosis gets its name from the lesions it causes on the tissue of the central nervous system. Sclerosis means “scarring,” and when the immune system destroys the myelin coating on the nerves, it leaves telltale scars. Multiple scars, if you will.

Now, the majority of people with MS have lesions in the brain. Some also have lesions on the spinal cord. Fewer have spinal cord lesions only. Guess which group I fall into! Yep, my brain is clear; I have lesions on my spinal cord.

Now, the spinal cord is divided into sections (from neck to tailbone, that’s 8 cervical, 12 thoracic, 5 lumbar, 5 sacral, and 1 coccygeal, for those of you keeping score at home), each of which is identified by its section and its number. My spinal cord is damaged at T10 and T11; for reference, T10 is right at the navel.

Why is this important? Well, the area where you have damage/scars/lesions dictates the location of your symptoms, so I could have problems from the waist down, but not from the waist up. I also have symptoms on one side of my body only (the left side! Another L!), which means the damage to the spinal cord is only on one side. Still, it affected both sensory nerves (those that carry information back to the brain) and motor nerves (that bring messages from the brain telling your body to move).

Thus, I have the following: nerves that send too much information about soft touch (making innocuous things like clothing or stepping on the floor feel really really uncomfortable) and not enough about sharp pain (so being pricked with a pin feels like it’s happening through a wetsuit); various areas that are numb; and muscles that don’t work properly and end up making my leg weak or my foot droopy or my bladder unresponsive.

Yet again, I’m afraid this sounds whiny, which isn’t my intention! It’s just meant to be informative, to let people know what MS is like. Believe me, I know how lucky I am.

Disney World – #AtoZChallenge

Way back in 2008, when Quinland was nine years old, my sister-in-law, Lynette, and I decided to take him to Disney World for his tenth birthday.

Around the time we started making our plans and buying our tickets for the trip, I was trying to figure out what the heck was going on with my body. Sure, I’d had a virus at the end of the summer like everyone else in my office, but why did my skin hurt? Why did I keep tripping? Why was I having so many random UTIs?

As time progressed, it was more severe. Why was my left leg numb? Why couldn’t I feel my foot? Why did my shoe fall off? And what the freaking heck was the horrible pain that wrapped around my body?

After multiple doctor visits and two MRIs, I was told, “Your test results are consistent with multiple sclerosis.” Lovely. They booked me for five days of IV solumedrol, with the last day being the day before we flew to Florida.

When the solumedrol days were over, I still had the pain, the numbness, the tingling, the difficulty walking — but now I was jacked up on massive amounts of prednisone and blown up like a balloon.

But back to Disney World! After issues with walking at the airport (and a subsequent wheelchair trip to the gate), we settled into the plane. By the time we got off, I was feeling much worse. When we got to the hotel, we were pretty much convinced that there was no way I could handle the trip since I couldn’t walk any distance at all. We got on the phone and started calling places that rented wheelchairs and scooters.

This ended up making the trip one that will go down in history.

When you can’t stand or walk, Disney lets you skip the line and go in through the exit. You wait there to board the ride at the next available time. Because of this, we were able to ride far more rides than we would have otherwise! A few ride operators would even ask us if we wanted to stay seated and ride again! (Hello, Big Thunder Mountain Railroad and the Aerosmith Rock’n’Roller Coaster!)

Only once did my rental scooter cause me any grief: I was making my way through the after-parade crowds while Lynette and Q ran ahead to scope out the next ride, when suddenly one wheel of the scooter got caught in a Main St. streetcar track. I was stuck; I couldn’t stand well enough to pull it up out of the track, and my people were nowhere near me. I had to ask a stranger to come to my aid. Luckily, he was generous and took pity on me, and my faith in humankind was upheld.

The trip ended up being fabulous. I learned to get in buses with wheelchair ramps; I got to go through rides quickly and often. (Quinland got the extra added bonus of being able to hitchhike on the scooter with me when his feet hurt or he got tired! It’s any kid’s amusement park dream!)