time to end psoriasis

The United States Capitol in Washington, D.C.

Image via Wikipedia

Guys, the National Psoriasis Foundation’s National Volunteer Leadership Conference (if you follow me on Twitter and saw a lot of #psonvlc, that’s what it was referencing) was awesome—and a great excuse to take a few days off work and hang around Washington, D.C. I’ll write more about the trip itself—and its impact on me, health-wise—later.

The conference was really great; there was an exhibit hall with vendors and information, all kinds of breakout sessions on everything from raising awareness to raising money and—of course—the big event: Climb the Hill for a Cure day, when psoriasis advocates hit up their Congressional representatives for support of the Psoriasis аnd Psoriatic Arthritis Research, Cure, аnd Care Act of 2011. (I was unable to go to that, unfortunately, since Tuesdays are a big day in newspaper-land.)

The breakout sessions I attended were on raising awareness on social media and in the traditional media (I actually got to talk a bit about being a blogger and the editor of a newspaper, though the latter half on newspapers was more of a rant on what annoys me and leads me to not publish things in the paper), a round-table discussion with some of the other mentors in the One to One program and a presentation on the highlights of psoriasis research and drug development. If you guys want, I can post my part of the social media presentation here; I’m also trying to get a hold of the PowerPoints from some of the other presenters, since I’ve had requests from people who weren’t invited to the conference. If and when I get them, I’ll post ‘em here, too.

But one of the coolest parts of the conference was meeting so many amazing people, like Marie B and Kathryn and Chris, mum to Carly and Katelyn. It was so refreshing to be in a room with people who get it, who have gone through what I’ve dealt with because they have psoriasis or they have psoriatic arthritis—or they know and love and support someone who does. I left the conference feeling like anything was possible. Just a few days later, I’m struggling with putting that feeling into action, but if nothing else, I left feeling hopeful. And that’s a good start.

#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 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 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 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?

small doses

An ice skate

Image via Wikipedia

I did something I was afraid I would no longer be able to do today. The last time I went, it caused so much pain that it’s been two-and-a-half years since I tried it.

Ice skating.

As a child, my parents would have to pull me off the rink to get me to stop. I could skate forwards and backwards, execute skate-over-skate turns and loved being the end of the whip. I loved the schink-schink of freshly sharpened skates on smooth ice, having to skate fast enough to keep warm on outdoor rinks and getting hot cocoa afterward. I loved going to Play It Again Sports each year to pick out new skates. I loved everything about ice skating.

Last time I went (before today), I was hoping to recapture those same feelings, to feel like a kid again, if only for a few moments.

But it was not to be.

It was excruciatingly painful, and after just a few minutes, I was done with skating, though I fought through it as best I could for awhile, trying to allow those who were with me to enjoy themselves.

Today, skating still hurt, but instead of being frustrated that I couldn’t skate for hours on end as I could when I was six or eight, I tried accepting my limitations, resting when my feet hurt and skating when they didn’t. And while I’m nowhere near as graceful or steady on skates as I once was, I can still glide across the ice. I can still enjoy skating.

So, that’s one thing I got to take back from this psoriatic arthritis. And it felt pretty awesome.

cake or death?

If only all our choices were so easy.

So, I was asked and decided to agree to working a few shifts for the retail outlet I used to work for. I went back and forth about the decision; I’m still not thrilled with the way the store manager handled my request for accommodation during a flare, but without that job last year, I’m not sure how the mister and I would have made ends meet. I felt we parted ways on a bad note, but if there’s anything this economy has taught me, it’s this: Don’t burn bridges. You never know when you might need someone’s help in a way you’d never counted on.

I also remember how amazing my old manager at my old store was during my first flare, scheduling me for shorter shifts, allowing me longer breaks and being so flexible with scheduling. So I know the way my current manager reacted isn’t a company-wide thing. I still feel grateful enough to her and the way she handled the time being my first symptoms and getting put on Humira for the first time and beginning to feel better that it’s transferring itself just a little bit to my current score.

So, like I said, I went back for just a few shifts over the holiday season. In return, I get the awesome discount through the end of December. (Score!) Yesterday, I worked my first shift, a short one. Today, I was scheduled for a much longer one and oh my goodness, am I ever feeling it now. I’m sore all over, and I’d like nothing more than to lay in a tub filled with Icy Hot, drinking some delicious hot tea.

In the meantime, sitting here wrapped in fleece with my cat purring away and giving me a mini-massage is a close second.