#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 whether—after going through nine months off my medications—I’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 off—I’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 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 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 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 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?

#HAWMC day 6: why i write

I have loved words for as long as I can remember.

As a kid, I was always writing or reading, burying myself in the impact words can have on the imagination. As I grew older, I relished losing myself in books, pretending to be so very far away whenever my life seemed less than ideal. Now, I still love reading, and I make my living with words: writing them, editing them, using them to inform.

It took me a long time, though—perhaps longer than it should have—to turn my love of writing into a health-centred blog. It was scary to put myself out there, to admit to the whole wide Web that I have a chronic illness, that I am not normal, whatever that is.

My first health-related post was during Invisible Illness Week in 2009. At that time, my blog was more about my life in general than patient advocacy, and I didn’t anticipate writing much more about my challenges with psoriasis and psoriatic arthritis. I remember the horrible pit in my stomach—the way my tummy feels during that first big descent on a roller coaster after the long, slow climb—as I hit the publish button.

Slowly, I started adding more content about PsA, until it completely took over my blog. Why did that happen? A couple of reasons: At that point, not a whole lot of people in my life knew about my health difficulties, and few of them really understood exactly what I was going through. Posting online was a way for me to connect with people like me. It also served as an outlet, as a way to release the sometimes ugly emotions that are one of the worst side effects of autoimmune disease—worse even than moon face (aka fat face).

Now, my motives still incorporate the desire for empathy and the need for a release, but there’s something more. I wanted to educate people as to what it’s like to be trapped in an 80-year-old’s body, what it’s like to have a chronic illness. I love being able to help people, to connect with people and to reach more people than I otherwise would be able to. I love being a patient blogger, a health advocate, a voice standing up and saying, “Yes, I have arthritis. No, I’m not 80 years old. And no, it doesn’t ruin or run my life.”

#HAWMC day one: acrostic

Though I am a few days late, I’m jumping on the WEGO Health Health Activist Writer’s Month Challenge. To rub? Write a post a day on a topic decided by the lovely people over at WEGO Health.

The first post? Write an acrostic poem using your disease. For once, I’m kind of jealous of Kerri for her diabetes. (Because it’s short, people! Geez.)

Without further ado, Psoriatic Arthritis: The Poem.

People often think psoriasis is contagious,

Something that can be caught from shaking hands.

Oh, how I wish they’d wake up and realize this:

Read my lips: The stupidity is more than I can stand!

I didn’t get the P because I don’t shower,

And PsA isn’t something that afflicts the old,

Tis true, they are both the result of the same power: an

Immune system that’s totally out of control.

Caring people can still make my burden lighter,

Although most days I need lots of pills, too;

Rarely predictable, this has turned me into a fighter,

To seem normal, a lot of acting I must do.

Help—though I may need it—is hard to ask for,

Running fast, just to stay in place.

It may seem strange to work so hard to go nowhere,

To use all my spoons to stay afloat,

It all seems worth it when I can be there

Stuck between the healthy and those in my same boat.

in the mood

Today has been a pretty average day: I fought with my alarm for 20-plus minutes before finally giving into the inevitable got ready for work, spent a lot of time in front of the computer and on the phone and am at this very moment sitting around, waiting for a public hearing to start. The life of an editor is glamourous—except when it isn’t (which is most of the time).

But the life of a journalist is, perhaps unsurprisingly, not one that mixes very well with having a chronic illness. I stand for long periods of time. Or, I sit for long periods of time, typing away at my computer or editing proofs or reporters’ stories—or, as I am now, in an uncomfortable chair for a multi-hour meeting. I work long days multiple times per week (like today, when I had an early interview and a late meeting). I come into contact with a lot of different people—including students, since I’m in schools quite a bit—which means I’m exposed to a lot of different bugs. Those same people often tell me the wrong time to arrive somewhere, which means I spend a lot of time standing around, waiting for things to begin  (which is incredibly frustrating). Late nights often mean taking injections at different times than my schedule. All of this means stress, which, of course, is bad for both psoriasis and psoriatic arthritis.

For now, the highs and lows of journalism are worth the potential harm to my health because, once again, I am working with people who are passionate about what they do, and that rekindled my flagging love of what I do. For now, that’s enough. And, in a weird way, I think that’s helpful for my overall health; it’s hard on the spirit to work, day in and day out, at something you hate. I am lucky enough that that isn’t true anymore.

And so, I guess that was just a complicated way to say I love my job again, and that’s a big part, I think, in why I’m feeling so much better. So, hooray.