hey, i felt pretty when they turned out the light

Being a woman can be pretty awesome; we can wear dresses and skirts (or not), have children (or not) and do just about anything we want. But being a woman can also mean internalising a lot of potential harmful stereotypes about what’s beautiful—and what isn’t. I’m sure we’ve all been made to feel less than beautiful (hello, high school), even if it’s just by the ubiquity of one unrealistic type of body being paraded through the media as the ideal.

But there’s a whole different set of self-esteem and body issues that come up when you’re chronically ill. Some of my favourites (that was sarcasm, in case you couldn’t tell): steroid weight gain and associated fat moon face and breakouts; nail pitting and bed separation from psoriasis; psoriasis in general, because who doesn’t love flakey, itchy and sometimes bloody skin; the fried, damaged hair that is the hallmark of repeated use of a coal tar shampoo (it also smells just lovely); swollen hands and feet (and just about anything else) from arthritis; and brain fog, which isn’t necessarily physical, but it’s certainly let to some bat-shit insane wacky off-beat choices in make-up, hair and clothes. (What did I miss?)

Why should we feel ashamed of any of that? Why should I wear nail polish to hide my freaky nails, wear light clothes and long sleeves to hide my psoriasis or elastic waist-band pants (ugh) on days my hands are flaring? I guess that’s really a question only each of us can answer for ourselves. I think there’s a fine line between accepting ourselves as we are and giving up, and between looking good to feel better and just plain covering up the truth.

As for me, I’m sure I’ll continue to care about my appearance, to wear flattering clothes and paint my nails fun colours and eschew elastic-waist pants. But I do it to express who I am, instead of hiding it. Yes, I have psoriasis and, yes, I have psoriatic arthritis, but I’m also young and interested in style, and looking good helps my self-esteem. So, take that media and take that, chronic illness; I am beautiful despite all of that.

 

(Also, since the last time I used a song lyric as a title, I got tons of people finding my site by Googling that lyric—and, in fact, still do—the song from my title is “Bullet” by Steel Train. You’re welcome.)

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i remember you

When I first was put on Plaquenil (or, rather, the generic hydroxychloroquine), it absolutely destroyed my appetite. I remember not really eating for the first couple of weeks I was on it, before my desire for sustenance returned, albeit much smaller than it previously was.

After I stopped taking it last summer, my appetite returned (as did all the weight I’d lost while on it, boo). So, when I was put back on the drug at the end of last year, I was expecting much the same thing: a severe reduction in my appetite. It didn’t happen; in fact, it seemed as though I was hungrier than ever (which is a side effect I associate more with the dreaded ‘roids than with this anti-malarial).

At least, this was the case until a couple of weeks ago. I just stopped being hungry. At all. There were a couple of days where all I had was a cup of coffee (thanks, Dunkin Donuts K-Cups) with a big of coconut milk creamer, a few bites of an apple and maybe a latte or a cup of tea. Now, tough, I’m up to a cup of coffee, some kind of small lunch and a light dinner. After doing some research, apparently what I’ve experienced isn’t that uncommon.

But the side effects of some of these drugs can be crazy, from increasing or suppressing appetite, changing our emotions or even altering the texture of your hair (thanks, Arava, for giving me the wavy hair I always wanted)—and that’s without considering some of the more dangerous potential complications. But I guess that’s the price we pay for feeling (mostly) normal.

loving what you do

What a difference a year makes.

It amazes me to think that this time last year I was actively looking to leave journalism. I was desperately unhappy with my work situation and having to work insanely long production days  simply because of a lack of planning on my boss’ part. I’m convinced this was, in large part, responsible for the insane flare that eventually saw me back on Enbrel, methotrexate and Plaquenil, a therapy I’m still on to this day.

Now, I’m the boss. I am working more hours than I was at this time last year, but I love every one of them. I have discovered a knack for writing columns—thanks, I’m sure, to this blog, which has helped me develop a more conversational tone than is appropriate in the average news story. Even on the verge of crazy weeks, such as this—a back-to-school section, two weekly papers, a monthly paper, the start of football season and weekend events galore—I’m excited to be up to my elbows in what I do.

And though my psoriatic arthritis is not completely controlled and is not where I’d like it to be—and that pesky tendonitis in my left wrist still bugs me from time to time—I’m living well in spite of it. That’s not my goal; I’d love to be back in the remission I enjoyed after my first, long flare. But even if that’s not in the cards for me right now, I’m surviving, even thriving, where I am. And that’s enough.

blog, interrupted

Hi. You guys remember me, right? I blog (apparently, sometimes).

Though I have been pretty busy—painting the kitchen, ramping up for our back-to-school edition, pleading with people to send us sports stuff since we are a tiny newspaper—the real reason I’ve been neglecting my poor blog (and reading the blogs of others) has not a lot to do with any of those.

It has to do with this:

I know, right? I, Nessie—a 27-year-old editor of a newspaper—got sucked into a video game with an intensity I have no experienced since playing Final Fantasy X on the PlayStation 2 back when I was a senior in high school (10 years ago). I felt super nostalgic (and craved white bread, yellow mustard and salami sandwiches washed down with Cokes—my high school video game meal of choice, which, of course, now with my dietary restrictions I could probably only eat the mustard.)

But, I’m back (I hope). And if you’ve commented, emailed or tweeted me, I’ll get back to you soon, I swear!

psoriasis isn’t contagious but awareness is

I got this today in my mailbox, and I think I’ll be giving it a go:

Psoriasis isn’t contagious, but awareness is! Each August, the National Psoriasis Foundation sponsors “Psoriasis Awareness Month,” dedicated to raising awareness about psoriasis and psoriatic arthritis, dispelling myths around these diseases and educating the public. This year, we are putting the lens on life with psoriasis and psoriatic arthritis, with its ups and downs, frustrations and realizations. Do you have a story to tell? We invite you – and the followers of your blog – to participate in the first-ever psoriasis and psoriatic arthritis online film festival.

Submit a short video for the Spotlight on Psoriasis and Psoriatic Arthritis Online Film Festival in one of six categories:

Youth – Calling all kids! Get out your video camera and show us what it’s like to be young with psoriasis/psoriatic arthritis.

Action – Have you taken action recently to help find a cure? Show how you are taking a stand through grassroots advocacy and volunteer activities.

Comedy – Are psoriasis and psoriatic arthritis funny? No! But you can help bring a lighthearted spin on living with chronic disease when you submit a comedic video.

Horror – Sometimes dealing with a chronic disease can be downright scary.

Music video – Got a song about psoriasis or psoriatic arthritis? This category encourages you to let the music flow.

Animation – Superheroes, aliens and talking animals can play a starring role when you tell the tale of life with psoriasis and psoriatic arthritis. Not an animator? Try this software: www.xtranormal.com.

Competition is open to anyone with psoriasis and/or psoriatic arthritis and the people who love them. The grand prize – as determined by the most online votes – is a $500 Visa Gift card. Deadline to submit a video is Aug. 28, 2011.

Read the Festival FAQ and the competition rules and regulations at http://www.psoriasis.org/pam.