#HAWMC day 22: more cowbell

There are so many things I wish were actual factual prescriptions for psoriasis or psoriatic arthritis. Take shopping, for instance. I wish at my appointment next week, my NP would turn to me and say, “Nessie, you know what will cure what ails you? A trip to the mall or that awesome thrift store or the flea market. Girl, you need to get your shop on.”

Spending the whole day in bed reading would be another kick-butt Rx. “Nessie, no more of this working hard nonsense. For the next week, you need to spend the day in bed, reading all those books you’ve started but haven’t had time to finish.”

Ooh, I wish eating red velvet cake (or, better yet, red velvet cupcakes!) was a scrip. “We need two red velvet cupcakes over here—STAT!”

Getting dressed up and going out somewhere fun—like dancing or to a show—why can’t that be a prescription?

Clearly, we all need to ditch Dr. No Fun and start listening to Dr. Awesome—the kind of doc that prescribes stuff like I mentioned above. But we all know pretty much all of those things would not really make us feel better. (Well, not for very long, anyway. I’m looking at you, red velvet cupcakes.)

What do you wish could be a prescription? (More cowbell, definitely.)

#HAWMC day 21: run lindsay run

Though there are many people I admire online and off, I want to stop and give props to someone I met through blogging: Lindsay of RunLindsayRun fame. (She also has a mostly gluten-, dairy- and sugar-free food blog.)  Lindsay is pretty kick ass; she owns her own business, she’s a mommy to an adorable toddler, she’s a wife—the list goes on and on—and she does it all with rheumatoid arthritis and fibromyalgia. She’s also kind, sometimes snarky and outrageously funny. When I first discovered her blog, I remember quickly devouring her archives; by the end, I felt as though I knew her.

Lindsay is hardcore; she puts herself out there on her blog: her triumphs, her failures, stories that don’t show her in the best light. She doesn’t make light of her conditions, but she shows how she’s living well in spite of them. All in all, her health activism is one of the best kinds: a life well-lived, surrounded by people she loves and who love her. She shows that it is possible to have an awesome life, even while you’re struggling with the pain, fatigue and, yes, heartache of chronic illness.

So, here’s to Lindsay: Keep on keepin’ on!

#HAWMC day 20: a room with a view

My blogging is normally done while I’m stretched out on my brown coach, Otis (the pup) curled up beside me. Sometimes, Remy (the kitten) hunkers down on my chest, leaving me unable to see the monitor or the keyboard. (Hi, typos!)

In a perfect world, I would have my own office—a space for me to decorate to my own tastes. There would be a wall filled with frames of pictures, prints and other things I love. There would be shelves filled with books, lots of colour and fresh flowers. I’d have a little iPod stereo, so I could play my music. Years of working in newsrooms makes it hard for me to write when it’s completely quiet. I like having things going on around me.

Back in the real world, I’m sitting in my living room, this week’s edition of my newspaper on the coffee table. Normally the Professor is either watching some James Bond or playing Modern Warfare while I write, which is at least some background noise. Our drying rack is set up with some laundry underneath our breakfast bar. I can see most of the apartment from here—including how much I really ought to be tidying up instead of writing. It’s distracting.

I think if I can’t have my own space, a coffee shop would be the next best place for me to work; there’s plenty of noise, plenty of coffee and it’s where I used to study when I was in university. I think having a dedicate space for my work—including blogging but also crafting and copy I bring home from the paper—would be really helpful. It would be a place I could go to be creative and a place that was mine.

Still, I do like that I’ve got Remy and Otis nearby, even if Remy has decided to lay across my hands, making it extra fun to type. I think she’s trying to give me a hint.

#HAWMC day 19: ‘it’s a living hell’

I was really prepared to write something grumpy; though today has been pretty good (we finished production at 5:20! That’s almost a normal quitting time!), I’m all out of sorts, at least partially because I haven’t taken Enbrel or MTX in two weeks because I’ve been sick.

But before I decided to unleash an angst-ridden post reminiscent of the Live Journal of a 15-year-old girl, I decided to check my email. And found this:

Life’s Greatest Risk

Excerpt from John 12:20-36

“Very truly, I tell you, unless a grain of wheat falls into the earth and dies, it remains just a single grain; but if it dies, it bears much fruit.”

Reflection by Ron Buford

A friend complained about his mom, a wealthy woman who wanted for nothing…but was miserable. “It’s a living hell,” was her constant refrain while shaking her downcast head, when even life’s smallest things went wrong.  This so bothered my friend that their time together was difficult.

Dressed up and driving to a party with the same friend one evening, we caught every green light along the way, sailing as if on a magic carpet. Finally, a red light stopped our flying.

I turned, looked at my well-dressed friend and passenger and with mocking tone and gesture  said, “It’s a living hell.”

Laughing, we pulled over and rolled out of the car.  From that day forward, when minor things went wrong, in unison we’d say, “It’s a living hell,”…and laugh. The phrase helped us see the relative ridiculousness of our angst, swimming on lakes of privilege. It also helped my friend suspend judgment with his mom. Anticipating her phrase, laughing, he began to say it for her, “I know mom, it’s a living hell.”

And then one day, instead of saying it, his mom actually laughed at herself. My friend let his old adolescent relationship with his mom die. A new adult peer-to-peer relationship was born. Both son and mom were set free. “Unless a grain of wheat falls into the earth and dies, it remains just a single grain; but if it dies, it bears much fruit.”


Gracious God, there are things in my life that need to die in order for my life to bring forth a bumper crop of joy. Help me see what blocks joy in my life so that my life may glorify you today. It’s time Lord, it’s time. Amen.

(Source: UCC Daily Devotionals).

Well, that just turned my bad mood inside out. So, I’m deciding to be in a better mood for the rest of tonight (as short as that may be) and tomorrow, too. Because when the tiniest things go wrong, they can add up to what feels like a catastrophe—even though it’s not.

It’s a living hell, eh?

#HAWMC day 18: right on schedule

As a journalist and editor, I don’t really have a typical day; I might copy edit or write one day, paginate and proof the next, and go out in the field and do interviews the next. But, I guess I could write down what my schedule looks like for this week.

7:04 a.m.: Alarm goes off. I hit the snooze button in nine-minute intervals until about 7:30.
7:31 a.m.: Shower time. It’s slow going, and I have a lot to do: hot oil treatment, shampoo, exfoliate my face, cleanse my face, condition, exfoliate the rest of me, shave.
8:03 a.m.: Breakfast time. Today I had a bowl of corn Chex, a banana and a mug of Lady Grey tea with honey. I surf the Web until about 8:30.
8:29 a.m.: Time to get pretty. I blow-dry and flat-iron my hair, brush my teeth, moisturize my face and body, put my make-up on.
9:05 a.m.: Time to get dressed. I had the worst time deciding what to wear this morning. Since I had a meeting tonight, I had to look extra professional. I eventually decided to go with wide-legged trousers, nude shell and a belted cardigan. (In case you cared.)
10:15 a.m.: First meeting of the day. I’m on my feet for way longer than expected—until about 10:45. It was a relief to get into my car and drive to my next appointment.
11:05 a.m.: Second meeting of the day. More sitting. Much better.
11:37 a.m.: Back at the office. I start going through the 300-plus emails I got over the weekend. Sigh.
12:04 p.m.: Lunchtime. I have some baked ziti with spinach the Professor made last week. I type up what came out of my first two meetings while I eat.
1 p.m.: Coffee break! My reporter and I walk down to the coffee shop, where we get entrenched in a 20-minute conversation about pie. (Seriously. It was awesome.)
1:22 p.m.: We head down to the local cafe to get a delicious cookie.
1:38 p.m.: Back at the office. I start fixing 20 photos from my Sunday event in CMYK and greyscale for the paper, since I don’t know how much colour will have at this point.
2:45 p.m.: Finally done with pictures. I start on stuff for our market-coverage freebie that gets sent to all the homes in our area.
3 p.m.: Get done with everything I can do until the reporter gets back from her meeting and gets me a story. I start putting the community calendar together, culling past events and adding new ones.
3:45 p.m.: Reporter gets me the story. I tell her it needs a graphic element, so she gets me the info I need for it. I futz around until I get a graphic I think I like. I put the four-page extra together.
4:45 p.m.: After printing out the proofs, I realise I hate the graphic. It’s too big. I make it smaller.
5:30 p.m.: Extra proofed, PDF’d and sent. I make my dinner—a peanut butter sandwich. Yum.
5:34 p.m.: I decide to work on the photo page for the weekly paper using those 20 photos I Photoshopped earlier. I use six of them.
6:42 p.m.: I head over to my school board meeting. There’s no parking, so I park in a nearby church and walk.
7:01 p.m.: The meeting starts. Throughout, I take notes on my laptop and write 1.5 stories for the weekly.
9:03 p.m.: Meeting’s out. Now, I drive 30 minutes home.
9:32 p.m.: Home. The Professor and I watch two episodes of “That 70s Show.”
10:24 p.m.: The Professor and I take the dog for a walk.
11 p.m.: We’re home. He settles down to play a video game, and I finish up some work.
12 a.m.: Bed time.

6 a.m.: Wake up. Wash face, brush teeth, make up, dress.
7 a.m.: Out the door. Drive 30 minutes to first appointment.
7:35 a.m.: Interview with student and her mom.
8 a.m.: In the office. Finish writing the story with the student/mom interview and write up the meeting from last night.
9 a.m.: Print out three stories that haven’t been proofed to copy edit. Reporter arrives.
9:15 a.m.: Proof reporter’s stories.
9:30 a.m. to 6 p.m.: Paginate newspaper.
6 to 7 p.m.: Proof pages.
7 to 7:30 p.m.: PDF pages, proof them one more time and send them to the press.
8 p.m.: Home.
8:04 p.m.: Walk the dog with the Professor.
9:12 p.m.: Home again. Watch a bit of TV or read a bit before getting ready for bed.
10 p.m.: Bed.

7:17 a.m.: Wake up. Shower. Blow dry and flat iron hair. Eat breakfast. Brush teeth. Make up. Get dressed.
8:30 a.m.: Off to work.
9 a.m.: At work. Check emails that I ignored Monday and Tuesday.
9:30 a.m.: Put up the eEdition of the paper.
9:47 a.m.: Put up the website and get later updates ready to go.
10:14 a.m.: Sigh of relief that busiest part of week is over.
10:15 a.m.: Talk with reporter about what we’ve got going on for the week. Assign stories as needed.
10:40 a.m.: Look at what other newspapers had. Curse if we’ve been scooped. Laugh maniacally if we scooped them.
11:40 a.m.: Go over the other newspapers in the company with reporter. Point out good and bad design. Eat lunch while doing it.
noon to 1 p.m.: Cover the office while office manager is out. Help customers. Take ads. Etc.
1 p.m.: Lay out monthly publication.
4 p.m.: Proof, PDF, send to press.
5 p.m.: Quitting time!
Then, I’m meeting a friend for (vegetarian) sushi! Yum.

This Thursday, I’m taking the morning off because of how much I worked Monday and Tuesday. In the afternoon, I’ll write and I’ve got an event to cover.

It’s Good Friday! I’ll go to church, and then we’re heading to my parents’ house.

There’s not a lot of time in there for self-care, but on days I feel bad, I try to make time for myself. On the weekends, I usually take it easy, though I do cover weekend events, too. It’s a busy life I chose, and it’s often not compatible with taking good care of myself. But I love it, and that keeps me going.

#HAWMC day 17: be here now

Today was a really awesome day. The Professor and I spent our afternoon on a local farm tour, enjoying the sights and sounds of our area away from the hustle and bustle of our daily lives.

My favourite farm—other than the winery, which was just fun—was our first. The sun shone brightly and warmed our bodies. The sky was perfectly blue, not a cloud in sight. I felt a cool breeze and vegetation brushing my legs and feet, crunching underfoot as I walked. The sound of turkeys gobbling whenever they heard a loud noise, hogs snarfling over food, chickens clucking and kids running around, delighted at the day and the sights and the sounds. I’d describe the smells, but I’m still pretty congested.

Today was awesome even though I couldn’t be mindful about it—I was taking pictures for work, so I spent my time framing shots, getting IDs and striking up conversations. But those around me didn’t have those same concerns, and I could see the impact the day had on them. And looking back over my pictures, I can remember vividly just how everything felt and sounded and looked. It was a great day and a lesson in enjoying myself regardless of what I’m doing. Today could have been miserable; it was Sunday, and I had to work. But the Professor came along, and it was a beautiful day. And when I think back on it now, a smile makes its way across my face and my whole body just relaxes.

It was a great day.

#HAWMC day 16: i don’t think so

So, today’s Health Activist Writer’s Monthly Challenge prompt is to write a news report about the day a cure is found for psoriasis or psoriatic arthritis. Well, I tried, but since that’s what I do for a living—I’m an editor, and my paper is too small for me to not write, too—it went against every fibre of my being to manufacture quotes and lie in a news report. So I’m using my pass for today, because violating my journalistic ethics—even for something that’s not going into any newspaper and could not be construed as factual—was just too damn hard.

Instead, enjoy this awesome site I found of out-of-print book covers turned into T-shirts. (They’ll send a book to a community in need with every T-shirt purchased!)

#HAWMC day 15: never worn

Today’s Health Activists Writing Month Challenge reminds me of the story Ernest Hemingway called his finest (“For sale: baby shoes. Never worn.”).

Here’s my two sentence narrative:

Lily stared out the window, uncertain as to whether she really wanted to proceed; she sighed. “Let’s do this,” she said, and pushed the plunger in.

I’m no Hemingway, but that’ll have to do!

(Hooray! Half-way point!)

#HAWMC day 14: truth or dare

There are plenty of misconceptions about autoimmune arthritis. We’ve all encountered them. For instance:

  • Only old people get arthritis. Wrong! I was 20 when I first experienced symptoms, and 21 when I was diagnosed with psoriatic arthritis (for the first time…).
  • All arthritis is the same. Wrong again. Osteoarthritis (the kind everyone thinks of when they hear “arthritis”) is very different from autoimmune arthritis. Within the category of autoimmune arthritis, there are many different kinds, too.
  • Arthritis is curable. I wish. There’s currently no cure for any kind of arthritis. Kind of sad, right?
  • You’re life is totally over now; all you can do is sit at home when you have arthritis. Not really. Sure, there are days when I feel bad and have to limit my activities, but I still work, I still have hobbies, I still volunteer. I have a very full life despite my arthritis.
  • Every day is the same for people with arthritis. Dead wrong. I may literally feel great one day and terrible the next. I might have a string of awesome days followed by a few terrible ones. I may have weeks or months or years dominated by bad days. The truth is I often don’t know how I’m going to feel on any given day—hell, sometimes on any given part of a day—until I get there.

What did I miss? What are some of your favourite (for lack of a better word) arthritis misconceptions?

And don’t even get me started on psoriasis misconceptions!

  • Psoriasis is contagious. Wrong-o! It’s an autoimmune disease.
  • Psoriasis is caused by bad hygiene. Wrong again. Still an autoimmune disease. Showering doesn’t make it go away.
  • Psoriasis is just a skin disease. It’s no biggie. Super wrong. Again, autoimmune disease. It’s also painful, itchy and embarrassing (mostly because of all the misconceptions!). It also puts us at risk for other diseases, including metabolic syndrome.
  • There’s a cure for psoriasis. Nope. I wish there was, though.

#HAWMC day 13: ‘if a fair world was what you were looking for, he said, you had to appreciate irony’

In the world of patient bloggers, there’s a lot of talk about what’s fair. And I get, really. It’s not fair that we should have to deal with these diseases. It’s not fair that we should be in pain and exhausted and fight to remember words. It’s not fair that our loved ones should have to watch us struggle to do ordinary tasks. It’s not. I know.

I have days when I strive—and sometimes fail—to accept that. I have days when I just want to stand in the middle of a room, stomp my feet and shout, “But it’s not fair!” Or maybe, “Why me?”  Still, usually before long, I see the humour in that image and shake it off.

And honestly, to answer my whiny unhelpful question with another question, “Why not me?” If not me, then who? I don’t know if it’s just who I am or if the PsA and psoriasis had a hand in making me this way, but I feel like I’m a pretty strong person. Most of the time, I’d say I cope with this just fine. If not me, then maybe the person who would have gotten this in my stead wouldn’t be able to deal with it, wouldn’t have an amazing husband, great doctors, awesome friends and a boss that understands—or at least tries to.

I guess the irony in my life is that I’ve got it pretty good, even with dealing with a chronic, life-altering disease. So, maybe, instead of asking, Why me? all the time, I should do better at appreciating what I’ve got. (But don’t get me wrong—I reserve the right to have a pity party every now and then! It’s part of the membership perks of being a Chronic Babe.)


(Title via Pete Dexter‘s “Spooner.”)