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I am Marie Bernadette.
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Posts tagged "awareness"

Last week I met with my dermatologist, who is in my top 5 favorite people ever (if I had such a list) because of two things: 1) He’s a realist, not an idealist. 2) He listens to me and actually takes what I say under advisement. What a novel idea! Here’s the thing… I’ve been on methotrexate for nine(ish) months now. Minimal improvement, and my last blood tests showed a noticeable spike in my liver enyzmes, which translates into “bad things were happening in my liver”. So… farewell, metho. It’s been fun, but the cons outweighed the pros, and you are done. [update: bloodwork yesterday revealed my levels are back down, meaning “my liver is functioning like it should be.” woo!]

So then it came down to: where do we go from here? I’ve tried all but one topical (note: you’d think I have a side-business selling skin medications if you saw my bathroom cabinets…) and Enbrel/Humira/etc. seem a little bit like overkill at the moment. So the current plan - try the one topical left I’ve yet to find a failure (Tazorac. It sounds like it plans to taser my skin right off, or something), back to steroids on the weekends, and 3x/week light therapy. Sounds like something I’ve tried before. Back to the derm in May (which means I’ll be back in Ohio in May) to reassess. Basically playing the waiting game of “how bad can it get?” while I play the mental game of “how much do I care?” Gotta love it. (and, because I respect my derm so much, I even read the Enbrel info he gave me. Still sounds like overkill.)

THAT said - today, I give a mega shoutout to Tim Hortons Cafe and Bake Shop. While patronizing their establishment in Steubenville today (cheddar cheese bagel, toasted, with a medium coffee, 2 splendas) I noticed the employee checking me out had relatively severe psoriasis. At this point, it’s something I automatically notice - like the color of someone’s eyes. I fought back the urge to say anything, because I know what it’s like when someone calls attention to something you’d rather not acknowledge, but what I really wanted to say was “I understand”.

Instead, what I’ll say is *props* to Tim Hortons for hiring workers with a visible skin disorder that so many misunderstand, judge, and shy away from. Psoriasis isn’t contagious (newsflash!) but awareness is. The more you know, the less you make a fool out of yourself by being afraid of something you can’t catch. May this one person’s witness - silent as it is - serve to grow the knowledge of the general public.

Just ‘cause we look a mess doesn’t mean you have to fear us. True story. And if you ever see me walking out and about, feel free to ask me. The acceptance stage was years ago - my goal is just to make you, the unsuspecting person on the street, more comfortable. And to get you to stop blatantly staring. That would be a nice bonus.

What has happened to humanity?

In England,some young people (and perhaps there are a few old ones mixed in) think they’re entitled to…well, whatever they can get their hands on by hook or by crook. Since when did that become acceptable behavior? People are being killed - and for what? Plasma televisions?

And here in America… oh, America. You’re the nation I’ve grown to love more and more as I’ve learned more and more. And love you, I do. I pray we’re able to continue our streak of greatness, because the truth is that we are an exceptional nation. There’s a reason so many of my ancestors came here - they were pursuing something greater than what was available to them in their native countries. And you know what? I’m not an Irish-American. I’m not a Welsh-American. I’m not a Swiss-American, nor a German-American, nor a British-American. I am all of those things, yes. I have some lovely Irish traits (hello, freckles) and some Welsh (hello, “dark Irish” coloring) and some Swiss (I love chocolate…?). But who am I? I am an American. Unhyphenated. I didn’t grow up in any of those countries. I may preserve a tiny bit of their culture through my family members, but I am straight-up American. And I love that, and my country.

But dear goodness, moving on, sometimes people make me scratch my head and glance appealingly skyward, as if to beg the Creator how this could happen. And yet, happen it does. Part of that whole free will thing - those of us with the ability to speak, do so, often relentlessly. Occasionally - perhaps more so, depending on the speaker - we are profound and even prophetic. And occasionally, we speak so harshly as to wound and permanently remain in the memory of our audience.

We all know I’m not the nicest person in the world, though I do subscribe to the theory of trying. I fully admit that I’ve grown nicer - or perhaps simply more censored - as I’ve aged/matured. Part of this has been in response to what I’ve heard, and what’s been directed at me. That whole “sticks and stones may break my bones, but words can never hurt me” stuff rhymes nicely but somewhat fails in practice.

10th grade of high school, in homeroom, a fellow classmate decided to announce to the class that “it looks like she has scabies, oh my Gawd!” Take a wild guess who the ‘she’ is in this statement. I’ve never forgotten those words, so apparently they have some power. And that’s just it: words have incredible power.

What is awareness? Awareness is using words in whatever medium you choose to educate, to inform, to edify, to enlighten those who otherwise would be in the dark. It’s standing up for what you feel strongly about - whatever the topic - and making a proclamation of sorts. Well, this is it.

Making fun of someone because of an illness, a disfigurement, a disability, or a physical anomaly is weak and petty. There, I said it. Deal. If you really think posting photos of Kim Kardashian with psoriasis on her legs so hundreds of similarly weak people can leave hateful comments is funny, you’re wrong.

Grow up. Superficiality is for those unable to face their own insecurities and failings.