Sickness rant

Reading Neurology Now Magazine tends to depress me. Not for the reasons you might think. It's not because it makes me worry about my future or brings to mind my physical limitations. Neurology Now has a lot of great advice and helpful information (and I even won their first art contest a few years ago). No, the reason it frustrates  me is because I don't know what information actually applies to me. I still don't have an official diagnosis for what's wrong with me. I have muscular dystrophy of some kind, so I've been told at the Muscular Dystrophy Association (MDA) clinic. I have had innumerable tests run, many coming back "inconclusive" which tells you nothing. I can tell you the many diseases I don't have. I can tell you what it's like to endure a pointless spinal tap. I can describe how it feels to undergo multiple EMGs, one of which the doctor was more concerned about looking at the results on the screen than the fact that he was making me bleed because he stabbed me too hard. I'm an old hand at getting MRIs--I even know the best kind of music to bring to drown out the noise. I know from experience to drink a lot of water and have something sugary to eat for blood draws.

I go to the MDA clinic once a year to get told I'm "doing fine." Maybe compared to the last patient who was drooling on herself and can't walk, sure, I'm doing great. But compared to myself, no, I'm not. Ten years ago, I could work out on a treadmill, lift weights and run a mile (albeit not a fast one). Today, I get achy and tired from walking up a few stairs. Lately, my legs have been hurting when I drive my car.

Every year, I go to the clinic, get a bunch of tests done, and feel like I'm sent off with a pat on the head. All the helpful stuff I've had to figure out on my own. No one could tell me, "Hmmm, Elisabeth, you're underweight with low muscle tone and poor circulation, you might want to invest in some sweater vests and leggings to help keep your core warm in the frigid Minnesota winters." Or, "Because your lower legs are weak, your back muscles have to work harder; be careful, you're more prone straining your back and shoulders." Nope, had to find that out the hard way. Or when the skin on the bottom of my feet broke down when I first got leg braces, I was told the skin shouldn't be reacting that way. Well, thanks, Nostradamus, but my feet ARE cracking and bleeding. Andrew's doctor was the one to suggest a cure that actually worked!

I'm convinced I have some form of Charcot-Marie-Tooth Disease (CMT), which I've been tested for twice, both times with a result of "inconclusive." That can mean anything: the blood was too old by the time it got to the lab, something didn't get handled right, the test wasn't analyzed properly, etc. Anyways, I have pretty much all the symptoms: extremely high arches, curled toes, foot drop, wasted lower leg muscles, numbness and tingling in my toes, weakened hand strength, neurologic pain (meaning, pain that doesn't result from an injury, it's the nerves misfiring). Whenever I go to my regular doctor, I always get asked if I've been tested for CMT. When I saw a podiatrist last year, she said I have the highest arches she's ever seen, and asked me multiple times if I'm under the care of a neurologist and if I've been tested for CMT. Unfortunately, I don't have an extra $16,000 laying around to pay for the genetic test. Pretty much, I just follow the advice given to CMT patients. But I'd really like to know conclusively what I have. I'm sick of the medical merry-go-round though--let's draw seven vials of blood, let's do an EMG, let's do a spinal tap, let's draw more blood, let's do another EMG, and more blood drawn. Nope, I'm done with that. I've been dealing with this since 2004, and I'm not going through anymore painful tests that reveal nothing conclusive.

Green raspberries for breakfast

There are things we love not for what they are, but what they represent to us: Brie cheese will always remind me of college, because of the art department's gallery openings I regularly attended. The smells of a bonfire and pine trees recall my summers at Storybook. Carry on Wayward Son by Kansas was me and my roommate's theme song my last year at Northwestern. And raspberries evoke a very specific memory, one of the oldest that I can remember:

It's a steamy summer morning on the Iron Range of Minnesota. Enter a huge yard, filled with flowers and towering trees grown into the rickety metal fence almost the same age as my grandparents' century old Victorian house. Just outside the back door is a small garden, where two little girls are stuffing their faces with as many raspberries as they can reach. The blonde is my younger sister, Leah, and the curly red head, that's me all of four-years-old. We don't know much about gardening at this point; all we know is that what grows out here is edible. If the red ones are good, then the green ones must be okay too. We completely plucked those bushes bare from the ground to as high as our little grubby hands could reach. We hear the back door open and scamper away. My Grandpa walks out with his bowl of cereal in hand to add some fruit to his breakfast. He gets over to the raspberry bushes and looks around, trying to find any ripe berries that might remain. Leah and I were quite thorough. He looks over at us, our red stained faces, hands and clothes completely giving us away. He chuckles and shakes his head. "Those bushes were full just yesterday! I can't believe you cleaned them all off. I wouldn't be surprised if you got a stomach ache from eating so many, especially the green ones." He went back inside and I could hear him exclaiming to my parents and Grandma how quickly we had made short work of his berry crop.

The house is still there two decades later, though the berry bushes aren't, and my Grandpa won't be around much longer either. My grandparents sold it in 1992, and today it's my uncle's home--he bought it after two different owners almost ruined it. The interior of the house is completely different these days--my aunt and uncle renovated and remodeled the entire thing. I don't really remember much of what the inside used to look like; mostly I recall running around the yard and playing at the park down the street.  The back door garden is gone, but there's even more flowers around the yard as my aunt has quite the green thumb. The fence is still standing with the old trees grown up through it. The back door shutting sounds the same though. And I still remember where the raspberry bushes stood. I can hear the echoes of two little girls' giggling on a blue sky morning as they ate green (and all the red) raspberries for breakfast.

Coming soon....

My next street art project is going to make use of these: 

shiny!

The idea came to me while I was eating breakfast this morning. It's either going to be really awesome... or really dumb. Hopefully the first option. 

The Mystic Knights of Tir Na Nog

Sadly, they do not come together and form a Dark Ages Voltron

Today at work I got a blast from the past. I shelve in the children's section and came across an old chapter book based on a Saturday morning kids show, The Mystic Knights of Tir Na Nog. I loved that series; as an 11-year-old I thought it was so cool. There was magic, and dragons, and magic armor, and a kindly old druid, and they had to go to a magic well where they got sucked into the land of fairies and got magic weapons...did I mention there was magic? And it was set in Ireland, which in my mind was the land of awesome (I really liked Irish mythology...still do actually).

Anyways, it lasted one season and I was so bummed when it got cancelled. I hadn't thought about that show in years...until today. And of course, I came home and Googled it (thank you, Wikipedia, for helping me to recall when it was even on the air)...and was subsequently semi-disappointed. It's Power Rangers, Lord of the Rings style. They even have a Gandalf and Smaug. The vague half-memory I had of this show was way cooler than the clips I just browsed through on Youtube. (My sister, Hannah, just peeked over my shoulder and was like, "Of course you'd like something like that. It's magical Ireland type stuff. That's totally you.") However, I will most likely watch at least one episode of this, since some similarly nerdy person was kind enough to post them on Youtube.

We are so cool. We know you're jealous.

Look, it's our orphaned hero raised by the aforementioned kindly druid, the plucky independent princess, the "bad boy" friend, and the token minority, all dressed like ye old times! (mind you, this is supposed to be set in ancient Ireland--not really a place known for its ethnic diversity, but ya gotta be PC for the kiddies.) I see better costumes than this at the Ren Fest. Seriously, my Ren Fest costumes look better than her outfit (what is that on her head anyway?) *end nerd rant*
And, of course, their personalities match the elements they're the knights of. Grumpy, blunt bad boy can cause earthquakes and throw giant boulders; moody female character can control the wind, etc, etc. However they did not dress in the respective colors of their armor, which it makes it hard to remember who is who when they're all powered up. How am I supposed to remember who the green guy is if he doesn't wear green all the time?!  I just love how awful and clunky their armor was (shoulder pads were big back then apparently), and their weapons were just ridiculously huge. I was going to post a clip here, but it's being stupid and won't let me, so just watch this to see what I'm talking about.

Man, the nineties were awesome.