resolute

English: "V" icon as as symbol for v...

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I’ve never really been one for New Year’s resolutions. I get the appeal, but it’s never been something that’s really worked for me. Still, this year, I decided to give it a go and wrote a 12 in 2012 list.

What’s on it? Why, I’m glad you asked.

  1. Be vegan. I’m committing to really making the switch this year, to being 100 percent vegan. Of course, it helps that I just found an awesome vegan macaroni and cheese recipe (that I’ll definitely be posting!).
  2. Be healthier. Eat better, sleep more, get exercise and be compliant on medication and treatment. I need to be better at this to control what I can about my health.
  3. Be more involved at church. I already teach Sunday school, but I’m going to join the choir as well and start going to the young adult meetings, too.
  4. Sew something every month. Put that Pinterest inspiration folder to use! This month, I’ll try to tackle the skirt that’s been fighting me.
  5. Read more. The mister got me a subscription to “The Economist,” so I want to read that every week plus at least one book per month.
  6. Date the mister. Got on one real date per month. This will get interesting, since we’re poor (see: I’m a journalist; he’s a student), but we’ll make it work.
  7. Battle blogger burnout. Find a blogging schedule that works well for me and stick to it.
  8. Write a 30 by 30 list and start checking things off.
  9. Speak more French.
  10. Keep my space clean and organized—at work and at home. This is a biggie, and it’s something I’ll usually let slide. But I feel better and am more production when my area is tidy, so I want to make this a priority.
  11. Get creative with my closet and my style instead of constantly buying more stuff or falling into a rut. To that end, I’ve started a little Tumblr and am going to take pictures of myself, style blogger styles. I think seeing how awesome my wardrobe is will help.
  12. Be present.

What resolutions did you make—if any?

always something there to remind me

It all started about seven years ago.

I had just gotten home from an amazing vacation in Bermuda visiting some friends. I was sitting in my first class at a new school when I got the first twinges of what I would eventually be told was psoriatic arthritis. The nearly yearlong wait from first symptom to first rheumatologist appointment was horrific; the only thing my regular doctor would give me while I waited was an old-school prescription NSAID—so I mainlined that and took far more than the recommended daily dose of Aleve.

It’s crazy to think that one thing changed my life so drastically. I’ve had flares and good periods, been on so many drugs and met a ton of awesome people, in real life (thanks National Psoriasis Foundation volunteer conference) and online (thanks, blogging). But I guess it hasn’t changed much at the same time. I’m doing well in the field of my choice—one that’s demanding and difficult for the healthy. I’m married. And I’m happy.

As I sit here, thinking about my life and enjoying my drink of the month (a Dogfish Head Punkin Ale, yum), I’d say I’m doing pretty well for myself, with or without chronic illness. That’s not to say life is perfect—I’ve still got more pain and inflammation than I’d like, and I’m still grappling with some potentially life-altering decisions. But overall, life is pretty good. And I’ll take that.

blog, interrupted

Hi. You guys remember me, right? I blog (apparently, sometimes).

Though I have been pretty busy—painting the kitchen, ramping up for our back-to-school edition, pleading with people to send us sports stuff since we are a tiny newspaper—the real reason I’ve been neglecting my poor blog (and reading the blogs of others) has not a lot to do with any of those.

It has to do with this:

I know, right? I, Nessie—a 27-year-old editor of a newspaper—got sucked into a video game with an intensity I have no experienced since playing Final Fantasy X on the PlayStation 2 back when I was a senior in high school (10 years ago). I felt super nostalgic (and craved white bread, yellow mustard and salami sandwiches washed down with Cokes—my high school video game meal of choice, which, of course, now with my dietary restrictions I could probably only eat the mustard.)

But, I’m back (I hope). And if you’ve commented, emailed or tweeted me, I’ll get back to you soon, I swear!

27

I just about an hour, I will officially be 27.

Somehow, 27 seems much, much older than did 26—it’s that much closer to 30 (which, thanks to Lindsay, I am totally looking forward to!)—but it’s not really.

It’s been a bit of a crazy year: I went from doing well to a crazy flare and back again; I went from hating my job and actively looking for something else to getting promoted and turning down other opportunities; the mister and I celebrated three years of marriage; and I’m coming up on about 13 or so years with psoriasis and 7 years with psoriatic arthritis.

Today, though, I’m not thinking about any of that. I’m just enjoying time with the mister and my in-laws, getting a mani-pedi and some Starbucks (my relaxation fix of choice) and being grateful that I’m alive and in relatively good health.

a victory—with pockets

I ordered myself a sewing machine (a Brother CS-6000i) as an early birthday present. It came in the mail a few weeks ago, and I love it. My first project—what else? A tablecloth for my (teensy) sewing table—was a bit of a disaster, with terrifically crooked seams. I did, however, learn some lessons that I applied to my next project: a skirt tutorial found on Pinterest.

It took me all last weekend. I ripped apart many a seam until they were all straight as arrows. Still, it’s not perfect, but I absolutely adore it. It even has pockets, people! (Pockets are crucial in my line of work.) And, better yet, it has an elastic waist but doesn’t look frumpy. Since my hands have been giving me trouble lately, a cute skirt with no buttons or zippers to fumble with is just what the doctor ordered.

Plus, I love that I have a hobby that I can do even when I’m not feeling great. With jewelry making, it my hands are sore and thick, it’s hard to manipulate tiny beads and thin wire. But, I can push a yard of fabric under the needle even with club hands. So, hooray!

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.

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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.

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 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.)