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.

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back on the ‘roid train

Newseum, Pennsylvania Ave. entrance, in Washin...

Image via Wikipedia (I love the Newseum!)

My impending trip to D.C. has forced me to take a long, hard look at how I’ve been feeling lately. And, if I’m being completely honest, how I’ve been feeling lately would best be described with a shrug and a “meh.” So-so. Comme ci, comme ça. And so on.

As much as I’m looking forward to it—and I so am—I know it will take its toll; there’s the five-hour (or more, if we hit traffic) drive there and back home, the walking around seeing museums (and the Newseum!) and just taking in the sights, the meeting new people and learning new things. All in all, a mix of stressors good and bad.

So, I’ve taken (and will take) some proactive steps to ensure that I can enjoy the trip the fullest and still be functional when I get back home (and have to go back to work the next day). The conference doesn’t start until Sunday, but I took tomorrow and Friday off, too, so the Professor and I can make a leisurely drive up. We’re staying with friends the first few nights, which I find less stressful—and more homelike—than staying in a hotel. The Professor bought me a comfy seat cushion for the car since the 2006 Honda Civic is not the most comfortable vehicle for drives totally more than an hour.

And—the biggest step: I asked my awesome NP for a quick steroid taper, which I started today. I’m not thrilled to be taking it in addition to the triple therapy combo of methotrexate, Enbrel and Plaquenil (and an NSAID and a muscle relaxant and an opiate, if I wasn’t so sensitive to damn things), but I know trying to force my way through will only leave me feeling worse in the end. And—combined with the oppressive heat and humidity (seriously: how is 100 degrees with 90-plus percent humidity normal for the end of May and beginning of June?)—I know just how bad muddling through can make me feel. I’m not going there again if I can avoid it.

So, to anyone who encounters me over the next two weeks: I apologize in advance for any crabbiness, waspishness or general cantankerousness. It’s the ‘roids talking.

 

blue bird

I must be insane.

This is one of the busiest times of the year for me, professionally. My newspaper is small enough that we run the pictures of all the graduates in a keepsake edition, and that means hounding the school district PIO for the pictures, editing them (greyscale, curves, resize, save as!) in Photoshop, matching the student ID number (which is how the pictures are named) with the master list and renaming the files alphabetically, double checking the names, putting mug shot boxes on the pages, filling them with pictures, resizing the pictures again, putting the names under the pictures, double checking the names again….

Plus, you know, we still have all the regular, small-town stuff to cover, which is a lot since the weather is finally turning nice.

So, what do the Professor and I decide to do? Paint our apartment, of course!

Sigh.

It’s going to look awesome when it’s done, but it’s definitely exhausting me. Painting is hard work on the joints! And, since we’ve been doing it after I get home from work, it makes for some long days. But, I have tomorrow off for Memorial Day, so we’ll do some more then—after I sleep in some. I can feel it in my bones; if I don’t start taking better care of me, I’ll be paying for it.

(Also, for those wondering how the cake batter shake turned out, it. was. awesome.)

#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 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.”

Prayer

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 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 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 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.

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.