Xanthia's MS Life

Last night I went to the St. Paul Art Crawl. If you've never done it...well it's too late this year but next year go, it's the best place to check out the local art scene, meet interesting people and get great deals on original art work. There are many buildings involved in this event and on the brochure it tells you which buildings are handicap accessible. To my utter dismay one of the buildings I went to did not have a working elevator although it claimed to be accessible - LIES LIES LIES!!! According to the "Out of Order" sign, the elevator had been out of commission since last September 2007! WTF?

I think because of that experience I also had my first MS related nightmare last night. I dreamt that my MS had gotten worse and that I was stuck in a wheelchair. The entire dream sequence took place at the Walker Museum, it was getting late and my brother had abandoned me there. I had no way to get home since I couldn't drive and to make matters worse I suddenly realized that there was no way to get out of the building by wheelchair (how I got into the building in the first place never came up, you know how dreams are). The Walker employees were horrible people who mocked me and treated me like a retard (yeah, I know the word "retard" is politically incorrect, so bite me :P)

I've never had a dream like it. In my dreams I don't have MS. In my dreams I'm healthy and dexterous and I know kung fu, and I can run or fly or melt into walls or see the future or talk to animals or visit pets long dead but never am I sick with MS. Man, that really sucked.

Sometimes people say to me, "Xanthia, you sure do have a positive attitude considering all the shit you have to live with. How do you stay so up beat and happy?" Of course I'm paraphrasing here but I am taken aback at how often I actually hear people comment on my positive attitude and marvel at it as if they expect me to become some insufferable bastard just because life handed me the short, snotty, blood encrusted end of the stick. I have a theory about that.

Gimps, the disabled, the chronically sick, the survivors of cancer, those lucky, rare members of the "Mystery Disease Club" (I'm trying to trademark that name by the way) must be (in a word) GRACIOUS. It's human instinct to separate the sick from the healthy, to travel with a healthy herd. However, if you are extremely sick and your prognosis leaves you with a fifty percent chance of joining the wheelchair brigade your only option for keeping the friends you have (you know, the ones that didn't ditch you when they found out you were sick) and for making new friends is by becoming gracious - exuding the kind of lust for life that contradicts or even mocks your state of being. If I was a little bit bitchy but I was healthy and "normal" I might be forgiven but if I was a little bit bitchy as a sick person - I would be entirely alone.

But all that is only a minor consideration when compared to the lovely, self congratulatory gift you can give to the people who can say, "...ya know, *I* have a friend who has MS and she has a really great attitude about life. She is so amazing, she could wind up paralyzed in a wheel chair at any time but she still knows how to have fun."

Don't hate me. It's the truth.

Here's something most people don't know about MS, when we overheat, we REALLY overheat. Here's why - mylein, that stuff that our MS brains are short on leaves raw vulnerable areas that are sensitive to temperature changes. Think of an old bare electric lamp wire plugged into a socket with too high of a voltage - it overheats right? Same with our brains, a normal person has insulation so the brain can function even when it's 90 degrees outside but we MSrs go all wonky (that's a technical term). Why do I bring this up?? Because I spent a couple hours doing yard work today - yikes! I thought I was going to pass out. I let myself get waaaay too warm. There is so much work to do though and the growing season is short, not a day to lose! I do believe I will have to hire some help though. I barely made a dent in the garden.

Naw, not most of the time. It finally occurred to me that I might be coming off as a more bitter and angry person than I really am. Ya see, when I'm happy or content or just relaxed (which I am most of the time), I'm experiencing those things in the moment and I share it with the people around me. The blog is where I come to talk about difficult subjects that wouldn't be appropriate to share on an everyday basis. The blog is my tool to vent just as my paintings are. How boring would it be if I waxed romantically about how much I enjoy hanging out on my porch sipping iced coffees on sunny summer mornings? Yeah, pretty dull. I dare not inflict my daily personal MS grind on my friends! That's what therapists and blogs are for oh yeah and art. So, in case there is any doubt here is some happy blogging crap about my life.

I LOVE my house and garden. It rocks! All of it. The house just turned 100 years old this year. Little by little the garden is starting to take on a distinct character, one that I've been working to cultivate for several years; a wild Gothic English garden.

I also LOVE my critters; the little dogs, the little birds and the non-domestic critters that visit my yard too, like the bunnies and hummingbirds in the summertime. My little pets are so fricken adorable and bring me great comfort and joy. See there? Happy stuff.

I am always happy to be amongst my friends of which I have many and I've also recently made some new ones. I love them all and feel grateful for their tolerance.

There is so much in my life that I'm passionate about and take great joy in. Simple things like sunshine, the first robin, the first tulips in bloom, learning a new skill, roller derby, taking pottery classes or joining the Horticulture Society. My life is rich and fulfilling despite being sick and heavily fatigued everyday.

Happy now?

Ok, I realize how long it's been since I've blogged. I won't make excuses, so there.

So, to start off this post I just discovered I've missed about a years worth of comments. I forgot that I changed the settings to moderate so I have to approve each post. Oops! My bad. So, I sheepishly offer any readers I have left (all two of you) my apologies. I wasn't ignoring you on purpose, well maybe some of you but that's only because you owe me money. You know who you are.

Now, on to the latest. Lets see...any new symptoms? Yup. I'm having trouble going down stairs. My legs can't seem to support me that well. I am fine with going up stair however. I am not fat, ok? And, I know what you might be thinking, "Maybe if you just exercised more. Or maybe if you lost weight. Or maybe if you did more weight/strength training." Well, no offense but maybe you're really wrong and need to shut the fuck up. I have been working out regularly and take good care of myself. It's called MS, get used to it. Do I sound bitter and angry? Good, cuz I am.

I wanna go to a concert this summer, a six hour concert called Rock the Garden, and all I can think about is not how much fun I'm going to have but how the hell am I going to stand for even an hour of the show let alone a few. I can't stay for the entire thing, I've got a wedding that night too. So then I start thinking, maybe I'll take a wheelchair but then today at work I saw this cute guy in a wheelchair but all I could see was that wheelchair even though he was all makin eyes at me and stuff. I couldn't have flirted anyway because I was at work, working, surrounded by co-workers and besides it's at a hospital, you just can't hit on cute wheelchair bound guys in a hospital, it's just so, so, oh what's the word, creepy.

The second new thing is that I broke down and got my prescription for anti-fatigue meds filled. It's a meth type drug, feels a lot like Ritalin. I miss Rebif. I feel too speedy on this new stuff and I'm having trouble getting to sleep. Yeah, that's helping me stay awake at work, NOT! I actually laughed out loud when I read the possible side effects - fatigue, depression, uncontrollable crying, muscle twitches and uncontrolled speech including Tourettes! Oh if only I could use that as an excuse, "Fuck, mouse turd, suck on this sphincter face! Sorry, can't be helped, it's my medication." I wonder if I could convince my boss that it only manifests itself when I'm writing e-mails. Hmmmm....

One of the more disturbing "possible" side effects of this drug is a total break with reality. What if that happened? Would I regain my sanity once I stopped taking it? How would I know if I was going nuts? I live with two dogs and a talking parrot, not the best companions for monitoring the Crazy-O-Meter. My co-workers already eye me with deep suspicion and mistrust. Would my friends be able to tell? I suppose if I started wearing bologna for hats and talking non-sense about a skinny black man becoming president they might check me in, but then again maybe not.