#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.

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#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.”)

#HAWMC day 12: inspiration

 

via Maessive

This photo (which is not mine) stood out while I was somewhat mindlessly clicking through Flikr, looking for some inspiration. It feels and looks like something I’m not sure I even want (though I think I do) but that becomes so much more complicated when you have a chronic illness. (Can I hear a what, what, Lindsay, Laurie and Kerri?)

 

This photo shows such love between mother and child, such innocence as of yet unspoiled. It is beautiful and tender and vulnerable and personal. It speaks of something I’ve not yet experienced and maybe never will, but for a few moments, I can peek into the world of motherhood and get a glimpse at just why it is that having children is something that is assumed; people don’t often ask if you’re having children, they ask when. (Or at least they do to me!)

One day, it would be nice to experience such an easy, everyday event: bathing with baby. I know, of course, that it wouldn’t necessarily be so easy for me and that it’s not even as easy as it looks in the picture. A photograph is just a moment frozen in the present tense. That mother—whatever else may befall her—will always glow with pride when looking at her child. The baby will always be making that ridiculously adorable face.

Whatever other musings it may bring up in me—when/if to have a child, how many, our own or adopted—looking at that picture makes me smile. And, after long, 11-hour day at work while sick with the flu or a head cold or something else that lingers and makes it impossible to breathe, I could use something that reminds me that sometimes it’s important to stop and enjoy the little things that make us smile: a vase filled with purple and yellow irises, Remy curled up on my chest, the Professor (who also just went out and bought my tissues; that’s true love!).

#HAWMC day 11: wikipedia is totally a source

Wikipedia: The bane of academics and the friend to journalists who need a quick and dirty lesson on something completely out of their field, like stormwater retrofits and non-infringing use.

But, as much as I may enjoy it professionally as a jumping off point (fledgling reporters, take note: It is never OK to use Wikipedia as a source in copy), the psoriatic arthritis entry kind of leaves me cold. It’s as sterile as a an operating room and about as pleasant to encounter. Seriously, take a gander. Back? Good.

If I were to have the endless spare time necessary to rewrite the entry on psoriatic arthritis, I would definitely make a few changes. First, why is it seriously the shortest medical entry ever? And the most sparse? There are lots of details that could be filled in, lots of areas that could use expansion. Starting with everything. Writing one line per subhead does not an article make. It should not take me more time to flippin’ braid my hair than it does to read some copy on a serious medical condition.

Also, could they have found a worse picture to showcase what PsA is? Oh, look, your feet are horrifically puffy and your nails look kind of funky. Other than that, it’s all sunshine and lollipops.

For a jumping off point (and a community-edited source), I guess it could be worse. But I would home someone interested in the disease would click on one of the few links to find something, somewhere that was a little bit more in-depth. Like a children’s book or a comic strip.

#HAWMC day 10: no big secret

Since I’m still feeling under the weather, this will be a pretty short one.

What’s my big health secret? The one thing that people think I won’t say but totally would, if asked?

Well, that’s easy: I am sick of being a model patient and still feeling crappy. I’m sick of taking my pills on-time and as directed, sick of sticking needles into my stomach and legs, sick of gentle exercise and eating well—and for what? So I can come down with my fourth cold in as many months? So I can be exhausted all the time? So I can pay dearly for something as innocuous as going to the flea market with my family?

Hmph. And, yes, I am a grumpy gills. That’s another not-so-much-a-secret secret.

#HAWMC day nine: worth overdoing

Today, I really overdid it.

All week, I could feel  my body fighting something off. I was fatigued and achy. My throat become sore later in the week. And then, like an idiot, I took my methotrexate injection; I was so drained, I didn’t even think about what a bad idea that was.

And today, I woke up feeling terrible. But today was my local Walk to Cure Psoriasis, and I’d been looking forward to it for months; I wasn’t going to let a little thing like being sick get in the way. Plus, my mum and mother-in-law were coming in from out of town, and I didn’t want to disappoint them.

So, the Professor and I got up early, and somehow made our way over to where they were holding the walk. And it. Was. Cold. Friday was sunny, beautiful, with a high of 83. Sunday is supposed to be about the same. Today? I don’t think it got out of the low 50s, if even that. But we made it through the walk, and then headed out to get breakfast. That was helpful; I had fruit and a bagel and a big glass of freshly squeezed OJ. That perked me up a bit, so my mum, mother-in-law and I headed over to the local flea market. We all found some great stuff—including, for me, this great, 1940s citrine ring and a great, vintage needlepoint broach—before heading back to my mother-in-law’s place. The Professor and I had planned to stay for dinner, but the whole week of just relentlessly pushing myself and ignoring the signs my body was giving me came crashing down. We came home, and I went to sleep.

I don’t know why I keep doing this; I think I can just push through feeling terrible without any consequences. And that’s just not true. Even though I’ve had psoriatic arthritis for almost six years now, it’s a lesson this crazy disease keeps beating me over the head with: There are consequences for every action. Doing one things means I can’t do something else. And ignoring that gives me a day like today. Still, even if it wasn’t necessarily the best of ideas, I’m glad I went out to the walk; it was to see so many people supporting people like me. And that’s just what the doctor ordered.

#HAWMC day eight: why do you ask?

A plague of questions

Aren’t you feeling better yet?
Why don’t you try this wonder drug?
Or this natural cure?
Or this shiny, fabulous snake oil?

Don’t you feel better yet?
How can you be fine one day and bed-ridden the next?
How can each day be so completely different?
How can each day be so completely the same?

Are you still sick?
Are you sure you’re not faking?
Are you sure you’re not exaggerating?
How am I supposed to help you when you don’t ever stay better?