rather burn out than fade away

So, I’ve been rather a bad blogger.

I wish I could say it was because I was out being too awesome—though that’s part of it.

Or that I was ill and just couldn’t blog—though I was for a bit (including a nasty bit of laryngitis, yuck.)

Honestly, though, it was mostly just burnout. I was really just over being positive, over being forthcoming and, most of all, over being sick. I’m not really sure why it hit me so hard or why it did right then, but I guess it was bound to happen eventually.

Being accepting, being positive all the time in the face of something that’s not going to get better and not going to go away, that’s really difficult. I had a pretty good run of it: working on 15 years with psoriasis and creeping toward a decade with psoriatic arthritis. For most of that time, I would say I had a damn good attitude. I took my pills on time. I did what I was supposed to do.

But, I’m still sick. And I think it just hit me hard all of a sudden that even though I’m doing all the right things, even though I’m doing everything I should, that’s no guarantee that I’ll feel good or even just OK on any given day. And that sucks, quite frankly. I wish it worked the way everyone says things should, that we would get out what we put into it. I wish it was fair. But it’s not. And I know that.

I just needed some time, I think, to wrap my head around that once more. I needed some time to be negative and to regroup.

What I’m trying to say is I’m done with that.

I’m back.

I could teach you

I was thinking about what I know well enough to teach a class in, and that led me to the classes I’ve actually taught over the last few months.

I’ve did a session on column-writing at my company’s editorial conference (which blog writing has definitely helped me with). I taught a class at my local state university on community journalism. I’ve taught a high school journalism class a quick and dirty design and style class. I’ve done tips for getting your story into your local paper.

So, I guess most of my talents lie with journalism and writing and newspapers. I could definitely learn you all a thing or two on that.

What would you teach?

This is a part of National Health Blog Writing month–30 posts in 30 days.

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

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

write drunk. edit sober.

Hemingway posing for a dust jacket photo by Ll...

Image via Wikipedia

My man Ernest Hemingway may have been on to something with his (in)famous exhortation the difference between writing and editing.

I am a writer and editor in my offline life, and everything that comes across my desk—written by yours truly or not—gets scrutinized at least four times before getting published. My reputation and that of my company depends on me getting it right every time. (But no pressure.)

That’s a lot to ask of someone, so when it comes to blogging, my methods are far more relaxed. Unlike my paid writing, I don’t read it aloud. I don’t read it forward for style and again for grammar. I don’t read it backward word by word to make sure there are no typos. I don’t have anyone else read it before it goes live.

When writing my blog, I do what editors everywhere tell you not to: I edit as I go along. I may read it over once before hitting publish. I’ll let WordPress do a spellcheck. That’s about it. It’s oddly liberating, to tell you the truth.

Then, I have apps that tw

eet the blog and send it to my Facebook page. And that’s about all there is to it, for me, anyway.

 

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