staring out into the future

One of the things I love about my favourite health bloggers—like Kerri—is how much they always have going on. One day, I would love to be able to make health activism my job, but I’m not there yet (and I’m not so sure I want to leave journalism. But that’s another story.) I’m a huge fan, too, of how much she does for her community, and I think she’s a great model of what health activism can look like.

I think the future of health activism is just more: more patient advocates sharing their own experiences. I think we’d all do the most good if we banded together instead of just focusing on our own diseases. My psoriatic arthritis isn’t so different from Wren‘s or Jillbean‘s rheumatoid arthritis. We’re helped by many of the same drugs and have many of the same demands.We’re hit with many of the same problems. Plus, added all together, those with different autoimmune diseases number many millions strong; imagine if we spoke with one voice. We’d be unstoppable!

So, I hope the future of health activism is more inclusive, more welcoming to different groups—and to people with symptoms but no diagnoses; I hope we one day realise a rising tide lifts us all to higher ground.

 

(Edited to add: See this? This is exactly why Kerri’s so awesome.)

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

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brand new day

It’s funny how you become kind of a slipcover version of yourself when you blog: some traits get magnified, others eliminated, and everything is told through the prism of my experience. I’m not sure what I look like to all of you, but I do know a thing or two about branding.

What would I want the Nessie brand to be? A wiser, funny older sister type who has been through it all and tells it like it is—but isn’t afraid to get serious. Am I there? I guess you guys would be the judge of that.

I also feel like there is pressure for me to be positive all. the. time. And there’s definitely a place for that; I don’t want to be a Debbie Downer because that’s not who I am offline. But psoriasis and psoriatic arthritis sucks; it’s a raw deal, and I think it’s reasonable to expect some down moments. I am not one of those people who gets all, “I’m sooooo grateful for chronic illness. Yay life lessons!” That’s not me; I’m not all sunshine and rainbows. But I do believe in making the best of things and accepting your situation—even while acknowledging that it’s not fair and it’s a tough break.

My brand? I guess I’m a little bit Jersey and a little bit Canada. And I’m OK with that.

 

Psst! You guys are good! Check out the comments to find out what my lie was.

 

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

another true story i made up

So, the name of the game is this: three truths and one lie.

Can you tell which is which?

  • I type ridiculously fast, much to the annoyance of colleagues, family and friends.
  • I have a sixth sense.
  • I was a Canadian pop star whose hits include a song about going to the mall.
  • I am a font elitist.

Have at, my friends.

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

standing on a mountain looking down

The thing about working in a community newspaper is you always have to be on.

As the editor of a small weekly, I am a champion, punching bag, easy target, reporter, photographer, layout designer, copy editor, information source and more that I’m probably forgetting.

My picture’s in the paper twice—once in our staff box and once in my weekly column—so there’s nowhere to hide. There are no days off; I’ve been stopped in Walmart more times than I can count by readers or sources who want to sound off.

The biggest thing, though, is a mixed blessing: People see the paper as their paper. Each little thing that happens in the community, why, that should be in the paper! And, as the editor, my policy is to say, yes—though that yes may not take the form the person asking wants.

Regardless, it can all be a little overwhelming, especially with elections (tomorrow, eek!) and small-town sports and all the great things that happen in my town.

It may sound like I don’t like it, but actually it’s really invigorating. I think know that people don’t realize exactly how much goes into putting the paper together every week—and how it’s just me, essentially, and one other reporter doing everything except the ads.

But even though I’m still at work now sitting in a school board meeting, ready to finish out what I’m sure will be a 12-hour day, and even though tomorrow promises to be just as long if not longer, I am ready. I’ve got eight bylines this week, and my reporter has as many, on everything from a high school attendance program to a cross-country state championship. I’ve got election coverage to get in Wednesday’s paper for four races and a county referendum.

And we’ll get it all—and it’ll be interesting, pretty to look at and compelling.

So, get ready, Tuesday; we’re coming for you.

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

one turn and now i’ve learned what it really means to see

Today’s prompt reminds me of one of the questions that we ask student athletes in a feature we, creatively, call “Athletes of the Week.” This question routinely stymies our young respondees, mostly, I think, because it’s so broad. The question? “What is your dream job?”

When I read today’s prompt (if you could do anything as a health activist—money being no object—what would it be?), I imagine I had the same look on my face that I get each week from the high schoolers I interview: bug-eyed, slack-jawed amazement. My mind was a complete blank.

What would I do to benefit the arthritis community, the chronically ill, those with invisible illnesses if money or anything else was no object? Where do I even start? There are the obvious ones—universal healthcare, universal access, ending discrimination, affordable drugs—but is that enough? An affordable cure would render everything else moot, so that seems like a no-brainer.

But how much control to I really have over that? Not much. Which brings me to, perhaps, a more realistic question: What would I do based on the very real limitations that I have? I think raising awareness is huge; when most people think arthritis, what they’re really thinking of is osteoarthritis. Having people know that there are multiple kinds of arthritis—kinds that are nothing like what you’re got in your little finger or what Grandma’s got in her knees—well, that would be a start.

Still, it’s not enough. I think what I’d really like to achieve is the call to action: getting people to care enough to donate money, participate in walks, to write letters to the editor and to their members of Congress. Basically, I want for autoimmune arthritis and psoriasis—hell, all these diseases we all struggle with—is what Susan G. Komen for the Cure has done for breast cancer. I want people to associate the colour blue immediately with arthritis the way they do pink with breast cancer.

Can I do it on my own? No, ma’am. But maybe with all of us working together—joining forces as those with autoimmune diseases instead of each of us focusing solely on our disease—it could happen.

 

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

all i ever wanted

'N Sync~N Sync

Image by bamalibrarylady via Flickr

(Sorry for the *N SYNC title. I just got back from a show, and one of the groups sang a cover of an *N SYNC song. It’s been stuck in my head ever since.)

So, five things that changed my life as a patient? All right. I’m game.

  1. Getting sick in the first place. So, that might seem like cheating but my first psoriatic arthritis flare was rough. I went to an emergency walk-in clinic after suffering through for a few weeks and the good doctor, in his wisdom, gave me a mild anti-inflammatory. It took something like eight months for me to get an appointment with a rheumatologist, and those eight months were horrible. I remember going through Aleve like it was candy. I was a student at the time, and I worked at a retail chain on my feet. It was torture. But, I eventually saw Dr. Awesome, and she introduced me to No. 2.
  2. Biologics. God bless whoever invented biologics. Without first Humira and now Enbrel, I would not be able to function—or at least not very well. Humira stopped that first flare in its tracks, which was huge for a twentysomething scared she would be trapped in her grandmother’s body for the rest of her life.
  3. iPhone. My iPhone is seriously a godsend. I can use it to stay connected to people, sure, but perhaps just as important, I can take pictures of myself in easy outfits for days when my brain can’t handle getting dressed in work-appropriate clothing. Seriously people, taking pictures of myself—a la style blogger—is a huge help when I’m stuck in a brain fog or my tendonitis decides to act up again. I can just pull up my album of tendonitis appropriate clothes—buttons are an especial no-no—pick an outfit and voila! Work appropriate.
  4. Flats. Ah, the days when I would wear heels all day, every day are long gone. Sure, I have a few heels that have passed the delightful test that is my double-digit hour workdays, but they are usually a) expensive and, therefore, b) few and far between. In between heel days, I subsist on flats—but they have to be cute, that’s a given. (And come spring, No. 4 will be supplanted completely by TOMS ballet flats. So. Excited.)
  5. The mister. Last but certainly not least. My hat’s off to all of you single ladies who do it on your own; I don’t think I’d be able to survive without the mister to help me out. Most Some days, I have nothing left after work: no energy for cooking, cleaning or doing anything except putting on my jams and watching Scrubs. But regardless of all that, the mister is always there for me, always able to buoy my spirits when I’m having a Bad Disease Day.

What would make your top five?

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

dear 18-year-old me

Dear Me, circa 2002:

You just graduated high school. Nicely done (not that there was any doubt). You’re moving away from home, and you’ll be surprised just how much that helps in the long run.

Enjoy your time at U of T. Go to class more. Try to sleep more. Eat better. Stay vegetarian—you’ll just be jumping back on that train in a couple of years anyway. Cherish the friends you make there because they are some serious kick butt people. Enjoy Toronto more—you’ll be wishing you still lived in a city 10 years from now. Go out drinking and dancing more because you won’t be able to do that for as long as you think. Go sing karaoke: Seriously. Just do it.

Go out and be young while you can: Things are going to get serious faster than you expect. You’re going to get hit out of nowhere with a chronic illness. You’re going to get married young. You’re going to be a journalist, which means you’re not going to have money. You’ll be lucky enough to find work in the midst of a terrible economic downturn. Your husband will go on to get two master’s degrees. You’ll become a Sunday school teacher (weird, right?). You’ll move to the South. You’ll run a newspaper. And all of this? It’ll happen before you hit 30, which seems really far at 18.

Most importantly: Relax. Things will work out for you, even if it’s not exactly the way you expected. Despite everything, life is pretty awesome.

Cheers,

Me, circa 2011

 

P.S.- Stay away from “The Matrix.” The second two movies aren’t worth the $30 you spent to see them.

 

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

#HAWMC day 28: not anymore

(I won’t lie—I really wanted to name this post “At Least I’m Not As Sad (As I Used To Be)” but I already did that. Damnit.)

(Also, incidentally, last poem of the Heath Activist Writer’s Month Challenge!)

Not anymore

I used to be carefree. But I’m
not anymore. I
used to be weak. But I’m not
anymore. I used to be aloof.
But I’m not anymore. I used
to be afraid of losing. But
I’m not anymore. I used to be
an island.
But
I’m not anymore.
I used to be the picture of health.
But I’m not anymore.

Still.

I used to be alone.

But

I’m

not

anymore.

(Now, I’ll leave you with fun.’s “At Least I’m Not As Sad (As I Used To Be)”. Because that song is awesome.)

#HAWMC day 27: quotable

I love a good quote. The right one can turn one’s day completely around. It can make you feel strong in the face of a bad day or completely turn your attitude around.

One of my most well-read posts was one where I wrote about the “Litany Against Fear.” It’s one of my favourite posts, so here it is again, for your reading pleasure:

Fear is a funny thing.

Since I am, truth be told, a big nerd, the first thing that comes to mind when I hear or see or write the word fear is a passage from Frank Herbert‘s “Dune.” If you’ve read the book, I’m sure you know the one I’m referring to:

I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past I will turn the inner eye to see its path. Where the fear has gone there will be nothing. Only I will remain.

I won’t lie: Fear is a big part of my life with chronic illness. A lot of what I’m dealing with is unknown: How will I react to [insert medication here]? Will it help me, do nothing, hurt me, or some combination of the three? Is how I’m feeling right now my new normal? Will I ever go into remission? For how long? Will I get worse? Will there be better treatments or, dare I say it, a cure in my lifetime?

The answer to all of those things: I don’t know. And, to be honest, that really bothered me for a long time; in some ways, it probably always will. But nothing is guaranteed for anyone. No one can say for certainty what the next year, next month or even next minute will look like.

But for all of that, I don’t think fear is necessarily a bad thing; without fear, there would be no opportunities for courage. Chronic illness, like fear, need not take away our hopes, loves, dreams.We can be brave and still chase down what we want. Sure, it might look a bit different than we’d hoped, but we can get there. And that realisation—that I can still expect great things from myself—that was huge. Giant, even. And so very precious.

I learned that courage was not the absence of fear, but the triumph over it. The brave man is not he who does not feel afraid, but he who conquers that fear.
—Nelson Mandela

#HAWMC day 26: totem

Hoaxed photo of the Loch Ness monster

Image via Wikipedia

I had a hard time coming up with a spirit or totem animal to describe my condition. I mulled it over all day, bringing up and discarding animal after animal. I was about to give up and just phone in something for my blog, when it hit me; it had been staring me in the face all along.

My spirit animal is definitely the Loch Ness Monster. (I know, right?)

Just like the good ol’ Nessie, psoriasis and psoriatic arthritis are kind of a mystery; people really aren’t sure what causes it, and there’s certainly no cure. The information floating around in people’s minds about it is hazy and fuzzy, like photographic evidence of the Monster. Some people don’t believe it’s real, just like some I’ve encountered with their kooky opinions on autoimmune arthritis.

My experience with psoriasis and psoriatic arthritis have been monstrous at times, too; the flares, the embarrassment, the pain, the oddity of having arthritis at 20. And the worst part: Never knowing when I’m going to flare, when I’m going to feel bad and when I’m going to feel good—or at least better.

I kind of like the idea of equating my diseases to an animal, especially a potentially fictional one. (Just kidding—Nessie is totally real.) It’s certainly got the potential of making me smile when I’m feeling especially crappy—and that’s definitely something I can use in my arsenal.