keeping up

via Glamour

So, apparently Kim Kardashian has psoriasis. I’m not so sure I like the tone of this L.A. Times blog post, but at least the writer mentions it is an autoimmune disease (though the off-hand mention of methotrexate as a treatment for it leads me to believe someone didn’t quite do his homework, despite the mention of the National Psoriasis Foundation’s website). But, I digress.

I was lurking on some of my psoriasis boards, and I came across something interesting—and it was the same on pretty much every forum I visited: People universally wanted Kardashian to step up and use her notoriety to gain some recognition and awareness for the disease (as if showing the entire world [that watches “Keeping Up With the Kardashians,” at least] the moment of her diagnosis wasn’t enough). I was pretty surprised at my reaction.

I completely disagreed with them.

I know, right? Isn’t that exactly what I’m trying to do with my little blog? Sure, it is. And it would be awesome if she decided to become a spokeswoman for the NPF. I would be right behind her. But I’ve had psoriasis for more than a decade, and it took most of that time for me to accept it, to be willing to talk about it with others. How can I expect someone else—regardless of where she falls on the obscurity-fame continuum—to be I bigger person than me? To be braver than me? Hell, I still blog under a pseudonym, and she let perfect strangers into her doctor’s office with her, let them watch her reaction to finding out she has a lifelong autoimmune disease.

Honestly, I think even if she didn’t lift a finger to raise any more awareness about psoriasis, I’d say she’s done quite a bit. After all, we’re all talking about it, right? And so are quite a few people. Searching Google for “Kim Kardashian psoriasis” brings up about 554,000 results. Yowza. So, right on, Kim.

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spoonie envy, or why my disease is worse than yours

I overheard something that makes me me angry, frustrated and really sad all at once. A woman was talking about her rheumatoid arthritis, something a (younger) family member has as well. But then she said, offhandedly, “Oh, her RA is nowhere near as bad as mine.”

I have several problems with that statement.

First, how can any of us really know the pain someone else endures? Most of the time, I look—and act—100 percent pain-free; many would not guess that I have psoriatic arthritis, that I’m multiple drugs just to keep me functional though hardly without pain. Since none of us can actually slip into another person’s skin, not a one of us can say with any certainty, “My pain is worse than yours.” Period.

Then, of course, is the fact that it’s not as though it’s a competition, as if there’s only a finite amount of pain in the world that must be gobbled up in order to garner the sympathy of others. The fact that someone else is hurting doesn’t actually have any impact on the amount of pain I’m in—which is why I’ve never understood when people say, “Oh, you shouldn’t complain. [X person] has it sooo much worse than you.” I always want to bop people who say that on the head; my aches and inflammation aren’t conditional upon those of someone else. My pain doesn’t diminish because someone hurts more.

But perhaps more import than both of those points is this: We could all do so much good if we weren’t so concerned with who gets to wear the pain tiara or with maintaining the division of diagnoses that run between us. Separately, those of us with various kinds of autoimmune arthritis—or even just autoimmune diseases—don’t have the numbers to have as much clout as, say, Susan G. Komen for the Cure. But together, we number in the millions; the many can do more than the few. Why not pool our resources so we can really get some stuff done? Imagine if as many people who donate for breast cancer research or to the American Heart Foundation knew—and, more importantly, cared—about autoimmune disease. That would be huge. But we’re certainly never going to get there—or it will be a long time coming—if we can’t all work together.

n.y. times take on psoriasis

Yvetta Fedorova / N.Y. Times

The N.Y. Times had an interesting article about psoriasis today.

The author, Jane Brody, hits the high (or low, depending on your perspective) points about having the disease: the shame and embarrassment that so often is an unwelcome side effect; the underlying immunological factors; that genetic and other factors contribute to psoriasis; the various comorbitities that can wreak even more havoc on a person’s life.

And she should know; her husband has psoriasis (well, she writes he had psoriasis—but we all know that even if it’s in remission, it’s never really gone).

Brody shares some good tips for psoriasis sufferers: don’t scratch the legions—no matter how intense the itch; be patient; moisturize, moisturize, moisturize; and, of course, seek treatment.

Overall, I thought it was a good piece, though I would have been interested in hearing from her husband, to hear more of how it has been for him in his own words. Maybe it’s just me, but I like hearing the stories of others with the disease; I like swapping war stories and treatment solutions, like finding out the crazy things doctors say to us that weren’t funny then but have to be funny now.

Most of all, I like it when people with the disease are allowed to speak for themselves, to be their own voices, instead of having healthy people speak for us. I wouldn’t go so far as to accuse the Grey Lady of ablism—I’m not so sure that’s what’s at work here—but it would be nice if one of the 7 million people with psoriasis would have been tapped to write something. (N.Y. Times, in case you’re wondering, I am always available to write a piece. Just saying.)

Regardless, it’s nice to have some pub—especially good pub like this—in a newspaper as widely read as the N.Y. Times. It can only help when good information is put out there; maybe next time readers will see someone with psoriasis and not edge away. I’d call that a victory.

we, the patients

I think just about everyone who deals with chronic illness has had at least one terrible doctor. I know I have: I’ve had a dermatologist who told me psoriasis is only a skin condition and was the result of a reaction to using a new shampoo (both wrong, by the by), and I had a rheumatologist who only wanted to treat me with pain pills (which is horrible for so many reasons).

Everyone has the right to adequate medical care, and part of that is seeing a doctor who is willing to work with you; of course, the patient must be willing to shoulder some of the burden for his or her own health, too. So, the National Psoriasis Foundation Medical Board and Board of Trustees worked with Dr. Jerry Bagel, director of the Psoriatic Treatment Center of Central New Jersey and a clinical associate professor at Columbia University, to create a patient’s bill of rights to make sure both doctors and patients know their responsibilities in making sure psoriasis and psoriatic arthritis are properly treated.

Some of the highlights are:

  • People with psoriasis and/or psoriatic arthritis have the right to receive medical care from a healthcare provider who understands that psoriasis and psoriatic arthritis are serious autoimmune diseases that require lifelong treatment.
  • People with psoriasis and/or psoriatic arthritis have the responsibility to be actively involved in managing their disease by participating in healthcare decisions, closely following treatment plans recommended by their healthcare providers, and making healthy lifestyle choices to ease their symptoms.
  • People with psoriasis and/or psoriatic arthritis have the responsibility to be honest with their healthcare provider about their health and lifestyle decisions that may affect the success of his or her treatment plan.

The rest of the document is filled with other good expectations for doctors and patients. I hope this helps doctors and patients communicate with one another and realise that we’re all on the same side—or, at least, we should be.

i’m loving … syd rocks

I was reading through my blogroll the day and stumbled across an awesome site: Syd Rocks. Sydney makes necklaces out of beach rocks on the shores of Lake Michigan. Why? Here’s a bit about her, taken from her website:

Sydney started her rock necklace business when she was only 8 years old. She found beautiful rocks on the beach of Lake Michigan and turned them into necklaces with a simple string. The necklaces were a hit among family and friends. She saved up the money she earned and planned to use the money for something important. Now she knows what that is…
In Sept. 2007 at 10 years old, after a lesion was discovered in her cheekbone, Sydney was diagnosed with LCH, Langerhan’s Cell Histiocytosis, a rare blood disorder. The cause of the disease is unknown and it is estimated that Histiocytosis affects one in 200,000 children each year in the U.S.
LCH is considered an “orphan” disease, meaning there is no government funding allocated  to research the best treatments and ultimately a cure. After a biopsy  confirmed Sydney’s LCH diagnosis,  Sydney underwent surgery to have a  port implanted in her chest to receive six months of chemotherapy along with high doses of steroids. Although
Histiocytosis is not classified as Cancer, it requires some of the same treatments.
Sydney has been doing well since she stopped treatment and plans to continue making and selling her rock
necklaces until a cure is found for LCH.
100% of the money earned from her Syd Rocks for LCH necklaces will be donated for medical research to find a cure for LCH and $10 from each t shirt sale will be donated to the Giving Rocks Foundation established to help other charities and projects Sydney has come to know and love.

Spoonies have to stick together, and I love that she’s been able to raise awareness about LCH in a tangible way. I know what I’ll be adding to my birthday list.

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.

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?

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.