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.

from end to end

Now that enough time has passed, I feel like I can really delve into the impact my escapade to the Washington, D.C., area for the National Psoriasis Foundation‘s National Volunteer Leadership Conference and Capitol Hill Day a couple of weeks ago.

As I said before, I asked for a preemptive steroid taper  to help me get through the drive to D.C. and all the walking I knew I’d be doing once I got there. I finished that today, actually, though my NP was awesome enough to add a refill to it in case I need a quick taper again. And despite the fact that I managed to stave off prednisone weight gain by working out on our borrowed NordicTrack just about every day and the crazy thirst that made me have to pee 4,506,597 times per day and the oddly vivid dreams and nightmares, I know I would not have survived that trip very well without it.

The Professor and I went up to the D.C. area a few days before the conference for two reasons: to see the sights (like the Newseum!) and to give me time to recouperate from being in the car for several hours. We timed it pretty well and ended up not hitting any traffic around Richmond, Va., or D.C. Our first full day there, we took it pretty easy, just running a few errands and grabbing the first of many cinnamon dulce iced soy lattes from Starbucks. (Yum.) On Saturday, the day before the conference, I seriously overdid it. We went to the Newseum (!)—which was amazing; we didn’t have time to see everything, so we saw the Katrina, 9/11 and Berlin wall exhibits and the Pulitzer gallery—before hitting the Washington Monument and the World War II memorial. That was a ton of walking, and my hips were sore for days after. But, thanks to the prednisone, I was able to push through.

The conference itself was amazing; if I ever get the chance to go again, I would definitely built in more rest time so I felt able to do more socializing! But it was great to meet people who so totally got it—as well as people from the National Psoriasis Foundation that I’d talked to on the phone or by email before. It was nice to get a face to go with the voice or the name—especially since not a one looked the way I pictured.

Overall, now that I’m back home and back into my regular crazy routine, all of that didn’t knock me out the way I had expected it to; my psoriatic arthritis is still not perfectly controlled but not any worse than it was and my skin still hasn’t decided whether it wants to flare or not, but it hasn’t been pushed over the edge (yet). So, all in all, I guess the trip was a success in more ways than one.

brace for impact

Today was supposed to be a good day.

The weather’s nice. It’s Friday. I bought myself some sunflowers at the farmer’s market, and they’re making my little office cheerful and bright.

But then some jerk guy decided to back up into my car.

(OK. I have tried twice now to get WordPress to post the full version of this blog. Hopefully third time’s the charm.)

Luckily, no one was injured and the damage to my car is minor. Things could most certainly have been worse. But it’s brought something into my life that I just don’t need right now: more stress.

I can feel myself on the edge of a flare; I feel as though if I stray to far to the left or right, I’ll plunge on down into one. To prevent that, I’d been trying to take it easy and to really take care of myself: eight hours of sleep per night (that one can be tricky), full compliance on meds, gentle workouts, good food. But all the self-care in the world won’t prevent someone else from blundering in and making a mess. And that’s what this guy did when he hit me; of course, he’s making it worse by trying to come up with different scenarios of how this was my fault that he backed his car into mine, but that’s another story.

As always, I can’t control how other people act, but my actions are up to me. And so I’ll be taking it easy this weekend and hoping against hope that I can pull myself back from the edge of a flare. Fingers crossed.

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.