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.

 

climb the hill for a cure conference

Tweeting bird, derived from the initial 't' of...

Image via Wikipedia

I’ve talked before about volunteering with the National Psoriasis Foundation, especially the One to One peer mentoring program. As a result of my work with the organization, I was invited to the Climb the Hill for a Cure conference in Washington, D.C. It starts Sunday, and I couldn’t be more excited. I get to be involved in workshops on getting my point across (blogging, social and traditional media), the One to One program and psoriasis research.

But even better than that, I get to use my knowledge as a small-town newspaper editor and a blogger with many tens of readers to talk about—you guessed it—getting your point across. And while I’ll definitely be blogging and Tweeting the conference, I want to pick your brains: what do you see as the purpose of your blog in particular and patient blogs in general? Are you an activist offline as well as online? How do you use your blog and social media to raise awareness about your disease and or chronic illness?

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.)

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 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 27: quotable

I love a good quote. The right one can turn one’s day completely around. It can make you feel strong in the face of a bad day or completely turn your attitude around.

One of my most well-read posts was one where I wrote about the “Litany Against Fear.” It’s one of my favourite posts, so here it is again, for your reading pleasure:

Fear is a funny thing.

Since I am, truth be told, a big nerd, the first thing that comes to mind when I hear or see or write the word fear is a passage from Frank Herbert‘s “Dune.” If you’ve read the book, I’m sure you know the one I’m referring to:

I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past I will turn the inner eye to see its path. Where the fear has gone there will be nothing. Only I will remain.

I won’t lie: Fear is a big part of my life with chronic illness. A lot of what I’m dealing with is unknown: How will I react to [insert medication here]? Will it help me, do nothing, hurt me, or some combination of the three? Is how I’m feeling right now my new normal? Will I ever go into remission? For how long? Will I get worse? Will there be better treatments or, dare I say it, a cure in my lifetime?

The answer to all of those things: I don’t know. And, to be honest, that really bothered me for a long time; in some ways, it probably always will. But nothing is guaranteed for anyone. No one can say for certainty what the next year, next month or even next minute will look like.

But for all of that, I don’t think fear is necessarily a bad thing; without fear, there would be no opportunities for courage. Chronic illness, like fear, need not take away our hopes, loves, dreams.We can be brave and still chase down what we want. Sure, it might look a bit different than we’d hoped, but we can get there. And that realisation—that I can still expect great things from myself—that was huge. Giant, even. And so very precious.

I learned that courage was not the absence of fear, but the triumph over it. The brave man is not he who does not feel afraid, but he who conquers that fear.
—Nelson Mandela

#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.

they really like me

I’m pretty late jumping on this, but I was named one of the top 40 arthritis blogs by NursingDegree.net! Most of the other blogs on there I already have on my Google Reader list, but there were a few new ones I can’t wait to devour.

Thanks, NursingDegree.net (and Corrine for letting me know!) Happy reading, guys!

#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.