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.

 

already pretty: body gratitude in the face of illness

I know I owe you guys two more HAWMC posts, and I promise I’ll write them. But I’ve been sitting on this awesome post for awhile, and, since I’m feeling like doggie doo from my crazy work week last week (and today’s delightful 13-hour work day), I thought I’d let this one roll.

Sally over at Already Pretty tries to tackle a reader question on keeping a positive body image when you have a chronic illness. Though she says she doesn’t have an intrusive chronic illness (invisible illness, anyone?), she hits the nail on the head with many of her suggestions. Why yes, Sally, I do in fact pamper myself with lovely clothes, fun makeup and shiny hair (what’s left of it from stress and MTX, anyway!).

But one of the commenters made a good point that sometimes, I need to give myself permission to not love my body. On a day like yesterday—when I slept until 3 p.m. and still felt exhausted, when a quick trip to the store left me sore and achy—I didn’t like my body very much. I didn’t want to think about all the things I could still do but instead wanted to remember the things I’d lost.

Today, I’m over that, but I think it’s important to allow myself those days—as long as I don’t wallow.

But head on over there; read through the comments, too. I’ll warn you, there are a couple of insidious ones, but they’ve mostly been dealt with already.

#HAWMC day 26: totem

Hoaxed photo of the Loch Ness monster

Image via Wikipedia

I had a hard time coming up with a spirit or totem animal to describe my condition. I mulled it over all day, bringing up and discarding animal after animal. I was about to give up and just phone in something for my blog, when it hit me; it had been staring me in the face all along.

My spirit animal is definitely the Loch Ness Monster. (I know, right?)

Just like the good ol’ Nessie, psoriasis and psoriatic arthritis are kind of a mystery; people really aren’t sure what causes it, and there’s certainly no cure. The information floating around in people’s minds about it is hazy and fuzzy, like photographic evidence of the Monster. Some people don’t believe it’s real, just like some I’ve encountered with their kooky opinions on autoimmune arthritis.

My experience with psoriasis and psoriatic arthritis have been monstrous at times, too; the flares, the embarrassment, the pain, the oddity of having arthritis at 20. And the worst part: Never knowing when I’m going to flare, when I’m going to feel bad and when I’m going to feel good—or at least better.

I kind of like the idea of equating my diseases to an animal, especially a potentially fictional one. (Just kidding—Nessie is totally real.) It’s certainly got the potential of making me smile when I’m feeling especially crappy—and that’s definitely something I can use in my arsenal.

#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 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 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.