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

#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.

#HAWMC day 25: red ink

Today’s challenge is to find an old post and edit it, revise it to how I would write it today. I like to think that I’m a fairly good writer; after all, I do it for a living. But even so, there’s always a way to make something better. Here’s the post I chose, and here is the new version:

This week’s Patients for a Moment question is easy to answer and profound at the same time: Who would you be without your illness?

That question is kind of simple but stunning in its implications. Unlike a lot of the bloggers who responded, I remember a time when I wasn’t sick; I remember being able to wear heels all week or stay up all night reading or go a few days (or weeks) getting little sleep, without any consequences. I remember when my life wasn’t filled with doctors visits, lingering pain and sleepless nights. I remember a time when I didn’t have to think about questions like this.

I noticed a lot of the others posted blogs about how they were glad for their illnesses, glad for the compassionate, strong, caring people it made them. Maybe I’m just not at the point they are at with accepting their illnesses and what it’s taken away, but I wouldn’t say I’m glad. I wouldn’t say the good its brought out in me has necessarily been an even trade with what I’ve lost. There are a lot of things I miss: not worrying about what I eat, not worrying about how much I work or how much medications cost and what I’ll do when my patient co-pay benefits run out on the only thing that seems to make a difference. I miss somethings some things I’ve never had and am not even sure I want, including the ability to talk about having kids without discussing how pregnancy will affect me and whetherafter going through nine months off my medicationsI’ll be in any shape to take care of a newborn. (Answer: Probably not.)

But, I am thankful, too, for what I have been able to accomplish, despite my illness. Even though some days I’m so drained I can barely make it through, even though I’m still recovering from a Thanksgiving to Christmas where I worked every day—with literally no days offI’m proud that I work in the field I do, with people out in the world who don’t know what I’m going through and who think what I produce is great, regardless. I’m good at what I do despite my illness. That’s a victory, no matter how small it may seem on days where I can’t even type because my fingers are so swollen, when sitting hurts as much as standing, when my brain is so foggy I can barely string three words together, much less write an article worth reading.

Who would I be without my illness? I’m not really sure that question is even productive, much less truly answerable. I am who I am because of my illness, at least in part. I couldn’t really say who I would be without it.

#HAWMC day 24: the best day ever

I think it’s a really awesome idea to think about the last week and be grateful for something that happened in it. There was a lot of work to be done, crammed into a four-day work week. But I think the best part came Thursday night. The Professor dug out my old GameCube. When we were in university, we would pay the Cube all. the. time. And doing that again this week brought a lot of that back—the nervous, flirtatious part before we officially started dating; the giddy early parts of our relationship; the falling in love parts; all of it came rushing back as we beat the crap out of the other team in Mario Kart: Double Dash and Super Smash Bros.

Spending that time with him—and all the time I spend with him—that was easily the best part of my week.

#HAWMC day 23: rhyme-tastic

Alright, guys. Today’s prompt for the Health Activist Writer’s Month Challenge is to rhyme Dr. Seuss-style. I’m not going to lie; I’m kind of over all the rhyming that’s been going on this month.

Instead, I leave you with the poem “Health is Wealth” by Raja Basu:

Health is our most precious wealth, I hope you agree
No doubt, health is the sweetest fruit of our life’s tree.
Money is certainly important, and so is social prestige

But it is a good health that is the source of a constant bliss.
You may have the money to tour the world, but can’t if your health does not permit
You can buy all the food of the world, but your bad health will not let you eat.
You might have huge honor in the city, with everybody bowing before you

But you will fail to enjoy it, if you regularly develop health problems new.
In this way the bad health will always play a serious bar
In the way of your enjoying what you have, wealth, house or car.

On the other hand the good health is a source of constant happines
That will automatically turn your life into one of charm, pleasure and grace.
Take good care of your health, and develop a body that is sound and strong

And ensure a life that is happy and charming, besides being long