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?

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year in review

Ah, yes, the staple of blogs, newspapers and radio shows everywhere: the year in review post/article/show.

2011 was a pretty good year for me, overall, so it’s good to look back at where I was then before considering how I want to make 2012 even better.

january.

I had just restarted Enbrel and was starting to feel better after the horrible slow decline of 2010. I got a promotion at my job (wahoo!), and my new reporter started. I was feeling pretty optimistic that things would be awesome.

february.

I fought the winter blahs and got an IUD. I got mad at people’s assumptions. I fell back in love with journalism, despite its potentially negative impacts on my health.

march.

I went ice skating—and learned to accept my limitations.

april.

I started the Health Activist Writers Month Challenge. I participated in the Walk to Cure Psoriasis. I was named a top 40 arthritis blog!

may.

I was incredibly busy with work, as summer events started rolling in and school events kicked into high gear before the end of the year. The mister and I painted our living room a lovely, bright blue.

june.

I traveled up to Washington, D.C., to visit friends and—best of all—present in and soak up the National Psoriasis Foundation’s volunteer conference! The mister and I celebrated three years of marriage. I set up a Facebook page for the blog.

july.

I had a bit of a nasty flare. I sewed my first garment. I turned 27.

august.

I got sucked in to Dragon Age: Origins (for the first time, anyway). I felt pretty (when they turned out the lights).

september.

I remembered 9/11. I worked Invisible Illness Week.

october.

I looked back on seven years with psoriatic arthritis. I posted my measurements for World Arthritis Day. Halloween! Real Thanksgiving! The mister and I visited my folks at their new home for the first time.

november.

I wrote a letter to my 18-year-old self. I started and didn’t finish National Health Blog Posting Month. I cooked my first vegan Thanksgiving.

december.

I worked an insane amount of hours, dropped off the face of the earth blog-wise, celebrated Christmas, joined the Christmas choir at my church, drove up to visit my parents and so much more. It was an action-packed month.

Whew! What a year. Peace out, 2011. Here’s to hoping 2012 is even better.

#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 13: ‘if a fair world was what you were looking for, he said, you had to appreciate irony’

In the world of patient bloggers, there’s a lot of talk about what’s fair. And I get, really. It’s not fair that we should have to deal with these diseases. It’s not fair that we should be in pain and exhausted and fight to remember words. It’s not fair that our loved ones should have to watch us struggle to do ordinary tasks. It’s not. I know.

I have days when I strive—and sometimes fail—to accept that. I have days when I just want to stand in the middle of a room, stomp my feet and shout, “But it’s not fair!” Or maybe, “Why me?”  Still, usually before long, I see the humour in that image and shake it off.

And honestly, to answer my whiny unhelpful question with another question, “Why not me?” If not me, then who? I don’t know if it’s just who I am or if the PsA and psoriasis had a hand in making me this way, but I feel like I’m a pretty strong person. Most of the time, I’d say I cope with this just fine. If not me, then maybe the person who would have gotten this in my stead wouldn’t be able to deal with it, wouldn’t have an amazing husband, great doctors, awesome friends and a boss that understands—or at least tries to.

I guess the irony in my life is that I’ve got it pretty good, even with dealing with a chronic, life-altering disease. So, maybe, instead of asking, Why me? all the time, I should do better at appreciating what I’ve got. (But don’t get me wrong—I reserve the right to have a pity party every now and then! It’s part of the membership perks of being a Chronic Babe.)

 

(Title via Pete Dexter‘s “Spooner.”)

poetic license

I was reading Sharon’s blog this evening. She mentioned Laura Hershey in her most recent post and a poem Hershey had written. After getting lost in Hershey’s writings and mourning her loss (she was only 48 when she died in November) and the fact that I stumbled across her work too late, I went on and read the poem. It definitely hit home for me—I’m going to print it out and tack it to my wall at work—and I hope you all enjoy it as much as I did.


You Get Proud by Practicing
By Laura Hershey

If you are not proud
For who you are, for what you say, for how you look;
If every time you stop
To think of yourself, you do not see yourself glowing
With golden light; do not, therefore, give up on yourself.
You can get proud.

You do not need
A better body, a purer spirit, or a Ph.D.
To be proud.
You do not need
A lot of money, a handsome boyfriend, or a nice car.
You do not need
To be able to walk, or see, or hear,
Or use big, complicated words,
Or do any of those things that you just can’t do
To be proud. A caseworker
Cannot make you proud,
Or a doctor.
You only need more practice.
You get proud by practicing.

There are many many ways to get proud.
You can try riding a horse, or skiing on one leg,
Or playing guitar,
And do well or not so well,
And be glad you tried
Either way.
You can show
Something you’ve made
To someone you respect
And be happy with it no matter
What they say.
You can say
What you think, though you know
Other people do not think the same way, and you can
keep saying it, even if they tell you
You are crazy.

You can add your voice
All night to the voices
Of a hundred and fifty others
In a circle
Around a jailhouse
Where your brothers and sisters are being held
For blocking buses with no lifts,
Or you can be one of the ones
Inside the jailhouse,
Knowing of the circle outside.
You can speak your love
To a friend
Without fear.
You can find someone who will listen to you
Without judging you or doubting you or being
Afraid of you
And let you hear yourself perhaps
For the very first time.
These are all ways
Of getting proud.
None of them
Are easy, but all of them
Are possible. You can do all of these things,
Or just one of them again and again.
You get proud
By practicing.

Power makes you proud, and power
Comes in many fine forms
Supple and rich as butterfly wings.
It is music
when you practice opening your mouth
And liking what you hear
Because it is the sound of your own
True voice.

It is sunlight
When you practice seeing
Strength and beauty in everyone,
Including yourself.
It is dance
when you practice knowing
That what you do
And the way you do it
Is the right way for you
And cannot be called wrong.
All these hold
More power than weapons or money
Or lies.
All these practices bring power, and power
Makes you proud.
You get proud
By practicing.

Remember, you weren’t the one
Who made you ashamed,
But you are the one
Who can make you proud.
Just practice,
Practice until you get proud, and once you are proud,
Keep practicing so you won’t forget.
You get proud
By practicing.

pampered

Is it Saturday, yet?

This weekend will be the first one in awhile that I haven’t had to work. Conveniently, my mum also doesn’t have to work Saturday, so she’s venturing out my way and we’re going to get some mani/pedis. Normally, I do my own nails every week (right now, they’re OPI’s Who The Shrek Are You? And, yes, they are Shrek-coloured), but it will be nice to let someone do them for me.

Doing something for myself is so important, even though I’m feeling more like my old self. I find it really easy to go not be so hard on myself when I’m feeling down or exhausted or in the midst of a flare. It’s so much harder to cut myself the same slack when I’m doing ok. But thanks to an awesome Christmas present from my dad (thank goodness for Spa Finder gift certificates), I can make sure I do just that.

good will to all men

 

via We Heart It

 

Merry Christmas, everyone! (Or happy holidays, if Christmas isn’t your thing.)

The Professor and I are up in Canada. I’m still doing fairly well. All and all, I don’t think I could have asked for much more for Christmas.

I hope everyone is doing as we as I am, and that time spent with family adds instead of takes away spoons.

drive away

I spent most of today—about 10 hours—in a van with my mum, husband, brother and his awesome girlfriend. I’m feeling a bit sore, but nothing too bad. It will be followed by another eight to ten hours in the van tomorrow, something that, despite how well I’ve been feeling lately, makes me really nervous. We’re driving to Ontario to see my dad’s side of the family, then after Christmas we’re going to head to Quebec to see my mum’s family before finally heading back home.

I am so thrilled to be able to go see my extended family; I haven’t seen most of them since either my wedding two years ago or Christmas two years ago—some of them even longer. And I am so thrilled that I am feeling better, that my family won’t see me the way I was three weeks ago: barely able to function. I’m so grateful for this chance to see them and to be able to fully experience and participate in everything that’s happening. I think that’s the best Christmas present I could have received.

chronic holidays

The holidays are a great time of year: gathering with family, eating good food, spending time with friends. Still, they can be rough on those of us with chronic illness. Gathering with family can be stressful, with fights, tension and potentially seeing people you wish you weren’t related to. Too much eating can lead to weight gain or eating food triggers or stuff you wouldn’t normally touch. All of it can mean pushing yourself passed your limits. It can be a disaster.

There are some things that I’ve learned through 13 years of having a chronic illness. A lot of the same things that apply during the rest of the years help during the holidays. Limit your stress as much as possible. I know that can be hard with traveling, seeing relatives with whom you may not get along and demands on your energy when you may not have all that much to give. But keeping everything in perspective is essential. Maybe you don’t go to every holiday party to which you’re invited. Maybe you let other people cook the big show-stopper dishes. Maybe you plan in naps during all-day family affairs.

Eating as well as possible is so critical, too. I know it’s tempting to have two or three helpings of all that deliciousness, plus a few slices of pumpkin pie for dessert. Bad idea. The way I (try to) prevent overeating is I only allow myself one plate. Whatever I can fit on that plate, I can take. No seconds. But I’m sure there are lots of other ways to keep from eating too much.

But, really, all the holiday tips in the world boil down to one thing: Take care of yourself. It’s not worth working yourself into a frenzy and hit every holiday high note only to be flattened for days or weeks afterward. My advice? Do as much as you can. No more. The holidays are no less special if you spend a few evenings basking in the glow of a Christmas tree, listening to carols on Last.fm and sipping on hot apple cider or (soy) egg nog.

no place like home for the holidays

One of the houses I grew up in.

After we got married, the Professor and I set up an arrangement: One year, we’ll spend Christmas with his family, and the next year we’ll spend it with mine. Sure, there are some inequities; since we live near his family, we see them every  (American) Thanksgiving, and we never go up to see my relatives for (real Canadian) Thanksgiving.

This year, of course, is our year to go up to Canada to see my family, and for awhile, it looked like we might not be able to go. We can’t afford plane tickets (and I’m not really a fan of the TSA’s new full-body scanners or the groping new pat-down techniques), and there’s just no way I was going to be able to sit for 14 hours in our fuel efficient, yet incredibly uncomfortable Honda Civic.

Then, Mum and Dad came through for us: They’re going to rent one of those giant, 15-person vans, so I can have an entire seat to myself and lay down, to make the trek. Instead of our usual one-day, no stopping marathon sprint, we’ll make the drive up to my grandparents’ house in a leisurely two.  And $200 or so later (thanks, extra fees for applying for a U.S. passport for the first time!), I will (hopefully) be good to go. And, you know, come back.

I’m still a bit nervous, though. It will still be a long time in a vehicle for someone who gets stiff and painful after 30 minutes. It’s still going to be my dad behind the wheel, and I have horrendous memories of trips to Myrtle Beach when I was a small child and being unable to stop for pee breaks until my brother or I started crying. (Mum says he’s mellowed. I guess I’ll find out.) And, if I can’t get in to see my doctor in time, who knows where I’ll be pain-wise.

Even so, I’m super, ridiculously excited. I haven’t seen my dad’s family since Christmas 2008 and my mum’s family since before that. So, merry Christmas to me! Even if I end up stuck in bed for a week, it will still be worth it.