suddenly, i’m not so young

Yes, that’s right. It’s my birthday. I share this awesome occasion with a bunch of famous people, including Emily Bronte, the Govenator and fellow Canadian Tom Green.

I feel like I should write some sort of “State of the Union” type post, but I’m about to hurry off to a tasty dinner with some friends.

Still, what I’m looking forward to most about my birthday is how my husband and I will be celebrating tomorrow: with frozen yogurt for lunch! Nom nom nom. And yes, those are delicious blackberries and M&M’s as toppings.

So, happy birthday to me!

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Novartis Exec: Golden Age Of Generic Biotech Drugs Is Coming « The Science Business – Forbes.com

This, biologics — which are terribly expensive, even with insurance — becoming available as generics, could be a huge deal.

Novartis Exec: Golden Age Of Generic Biotech Drugs Is Coming « The Science Business – Forbes.com.

I’ve been on three different insurance plans (one: Dad’s stellar insurance; two: my own decent insurance with one company; three: mediocre at best insurance) and the cost of the biologics has varied dramatically, from a doctor’s office co-pay to $60 for a month’s supply to $200 for a month’s supply. I guess we’ll just have to wait and see whether the FDA will allow for the creation of generics for Enbrel or Humira or any of the others.

breakdown, go ahead and give it to me

The newest edition of the Chronic Babe blog carnival is up! Here are some of my favourites:

Enjoy!

awareness is contagious

I think I’m starting to develop a bit of a complex when it comes to my psoriatic arthritis. Every time I type in “psoriatic,” for example, I get the little red squigglies that indicate that either the word is spelled incorrectly or the word doesn’t exist.

Well, guess what, Microsoft and Apple: It is a word, you jerks. It certainly exists.

Of course, this pushes its way into other aspects, too. I was looking for some PsA resources on Google the other day, hoping to find something new to add to my understanding of the disease. I noticed Google found about 716,000 results. Not shabby, right?

Wrong.

I decided to type in “rheumatoid arthritis” to see how many hits I’d get: 7.89 million.

Now, I know, by the numbers, that  more people have RA than PsA. It’s hard to track down real estimates, but as best as I can gather, people with PsA number in the hundreds of thousands, while those with RA number in the millions. And I’m really not trying to downplay the seriousness of RA, nor do I wish those with RA had fewer resources available to them to cope with what they’ve got. I just wish there was more out there for those of us with psoriatic, and not rheumatoid or osteo, arthritis — a MyPsACentral would be nice (P.S. — MyRACentral is super nice! I’m not hating, I swear!)

I guess what I’m saying is it would be nice if there was the amount of information out there for those of us with psoriatic arthritis; hell, even a combined “arthritis” website with information on the various kinds — and not just osteoarthritis — would be lovely.

So, I guess I need to step up and do my part in engaging in this. And, conveniently enough, the National Psoriasis Foundation has launched a campaign, to coincide with Psoriasis Awareness Month in August, to increase the profile of psoriasis and psoriatic arthritis (which I honestly did not even know about when I started this post earlier today). Plus, there’s our good ol’ fashioned celebrity spokesperson, LeAnn Rimes and her pledge to get more of us to stop hiding.

I’m trying to do my part. I’ve signed up for the challenge to help raise awareness. The more people know about autoimmune diseases — be it rheumatoid arthritis, psoriasis, spondylitis or any of them — it helps us all. Because, really, those with RA aren’t so different from those with PsA; it’s ignorance that’s the real enemy. Everyone benefits from greater understanding.

I’m still holding out for MyPsACentral, though.

nothing feels good being under the gun

“Well, crap.”

When everything goes to hell, that is usually the first thing my inner monologue can come up with. Helpful, right? (Not, not really.)

But when everything starts tanking, I usually retreat to one of two responses: Curse a lot, feel overwhelmed, whine, cry, complain, et cetera or step into a pencil skirt and a sassy top, put on my biggest statement necklace, curl my hair, pop on some red lipstick and a pair of fierce high heels, put on my best “Mean Girls” stare and, hand on hip, cut that beyotch down to size.

When I start feeling overwhelmed, it helps me to at least look put together. When my life seems to be spinning out of control, when work deadlines pile on top of housework and the dog decides to eat something that doesn’t agree with him and so has it shooting out both ends, when I’m flaring, it seems the only thing I can control is my appearance, the face I present to the world. And so that face seems so much more important than it does when I’m feeling well (or well-ish).

Subsequently, if I look like I’ve got it all together, I start feeling like I do, too. And then that mountain I feel like I’ve got to conquer starts looking more like a pile of beans.

But the thing I’ve found helps me best is to be really organized. This is not, unfortunately, my nature, but I’ve learned I function best when I write everything down (especially when the brain fog starts rolling in) and when everything has a place. It took me a long time to organize my office (cubicle) the way I  need it to be; now that it is, though, it helps when I feel like everything is crashing down around me.

Of course, sometimes I still need a good cry or a good yell or a good cuddle or to just sit in my pajamas the whole day eating frozen yogurt and crossing absolutely nothing off my to-do list. The thing is, most of the time, I just don’t have the energy to start freaking out over whatever this week’s big crisis is. Most of the time, I put my head down and muddle through. But every now and then, with all those plates up in the air, one of them will fall. If you’re lucky, someone else will be there to catch it before it hits the ground. If not, you’ve just got to dust yourself off and try again. (And maybe invest is some Corelle dishware, next time.)

(PS- I took that photo when I was at university, after a hurricane blew through. I had never had school canceled because of rain before. Snow, yes. Rain, no. I can’t say that anymore.)

touch a hundred flowers and not pick one

On Wednesday, the day after my perennial worst day of the week, I came home from work grumpy and out of sorts. But, my lovely husband had bought me a beautiful bouquet of flowers, with sunflowers, a green and purple plant that looked similar to nettles, yellow daisies and this amazing purple-y indigo flower. It brightened my day and brought this poem to mind:

“Afternoon on a Hill”
Edna St. Vincent Millay

I will be the gladdest thing
Under the sun!
I will touch a hundred flowers
And not pick one.

I will look at cliffs and clouds
With quiet eyes,
Watch the wind bow down the grass,
And the grass rise.

And when lights begin to show
Up from the town,
I will mark which must be mine,
And then start down!

I think I need a day like that, a day to be happy and vibrant and out in nature. Maybe when the weather cools off from the triple-digit temperatures we’ve been having, we’ll take our seasonal stroll through a local garden. That would be perfect.

putting the ‘style’ in versatile … or something

The lovely Dana of I Already Gave My Right Arm To Be Ambidextrous has honoured me with the Versatile Blogger Award. Thank you so much, Dana! A bit about her:

I have avascular necrosis in my shoulders, hips, and knees, psoriatic arthritis, sjogren’s, fibromyalgia, and hypermobility. I had my left hip replaced in 2003, and now I had my right shoulder replaced in March of 2010. I literally am giving my right arm to be ambidextrous!

As far as I can tell from an albeit limited Google search, I have to say seven things people may not know about me and nominate seven others for the award. Hmm… Well, here goes:

  1. I went to school in two languages until I was about 12 years old. I grew up in Canada, near Toronto. My mum is French Canadian. When she and my dad met, neither one of them spoke the language of the other. Still, they got married and eventually had me. When I was really young, my mum would speak to me in French and my dad in English. Consequently, I know both languages. Mum told me I would use my abilities to speak both to get things out of my parents. She said when I was about three years old, I asked her for a cookie. She said no. Then, I went to my dad and asked him for one. He said yes because he hadn’t known Mum had already turned me down. I was sneaky even as a toddler.
  2. I really, really, really enjoy the Backstreet Boys and don’t care who knows it. That’s right. The Backstreet Boys. My devotion went so far that I used to write fan fiction about it. Oh yes. I was that girl.
  3. I am a journalist who hates going up to people at events and asking them about it. Really, really hate it. If there was anyway I could do my job without doing that, I would. In fact, I hate it so much, I have been thinking really seriously about getting out and going into teaching. I’m so serious about it, I have narrowed down the schools I would like to attend to get my master’s.
  4. When I attended a large university in Toronto, my friends there called me V-Bot. The explanation is pretty simple: My nickname was already Vee and everyone seemed to think I was a robot because I didn’t sleep much, didn’t eat much and was generally electronic in nature. (As an aside, not too long after I left U of T, I started flaring for the first time.)
  5. I sang in the chorus at my middle and high schools, including a select chorus when I was in grade eight. I only tried out because a friend wanted to audition, and the choral director had everyone do so in pairs. I got in; she didn’t.
  6. I really enjoy playing video games. I had a Sega Genesis as a kid before moving on to Sony consoles and the Nintendo GameCube. My favourite games to play alone are the Final Fantasy series, but I have so many amazing memories of playing Mario Party or Mario Kart: Double Dash in my friend’s basement in high school. I spent many a-night in that basement being a big dork. It was  awesome.
  7. I had a perhaps unhealthy obsession with Jane Austen, Charlotte Bronte and other similar novels when I was about 10 or 11 years old. I’m sure that fueled some of my less modern notions about relationships.

That’s it! Now, onto my nominations. I’m going to say none of them are chronic bloggers, mostly because I have other interests than in learning about PsA and am more than just a sick girl.

  1. My good friend bEsther, aka sequesthered, over at esther has a blog. I met her while in university, and she is super smart. She’s also super talented! I am a little jealous of her musicality, truth be told. Right now, she is in Korea.
  2. I am kind of obsessed with Kendi over at Kendi Eveyday. She is a fashion blogger with a sense of humour. I rarely get dressed in the morning without popping over there to see what she’s wearing. We have different styles, but I think being fashionable and taking care of myself in that way is important. Most importantly, she’s hilarious. Really.
  3. Marisa at New Dress A Day was in a bit of a style rut when she decided to start blogging. She gets dresses that have seen better days, alters them and shows of her shiny new outfits for the world to see. She is doing it for an entire year and spending only $365. No shopping for clothes other than the ones she’s going to alter. She makes me wish I could sew!
  4. This one isn’t a blog, so much as Stuff Journalists Like. Even on days I hate my job, SJL always makes me laugh. And it’s pretty much all true. Maybe non-journos won’t find it finny, but it is pure comedic gold to me.
  5. Gabe at Pit of Despair is a friend of mine, and his journal comic is really good. It’s about his various adventures as a husband, dad, drummer and artist. He hand inks everything, which is really impressive! Like Marisa, he makes me wish I could draw.
  6. Everything the klutzy chef makes looks delish. It makes me wish I could cook. … I’m noticing a theme, here.
  7. Pammy Girl of Hey There, Pammy Girl! is someone I wish I knew in real life. She sounds like a blast, and her blog is awesome. For real.

Thanks again, Dana! Everyone, I hope you enjoy the blogs.

just you and me and the road ahead

At first, when I was thinking about the nicest thing anyone had ever done for me since I’ve had psoriatic arthritis, I just kept drawing a blank. Most people where I live now don’t know about my PsA. In Jersey, pretty much all my friends do because I couldn’t hide it. I was in so much pain before getting my diagnosis and subsequent introduction to the lovely world of immunosuppressants that I couldn’t hide it. I was like the Hunchback of Notre Dame. So, for a few moments, I was in a bit of a bind.

But, really, how could I have written anything but all the amazing, wonderful, loverly things my husband does for me every day? I mean, the man married me, potentially crippling, chronic illness aside. And he makes my life easier, more joyful, more vibrant every day by just being in it.

Still, the best thing he does for me is not let me be too hard on myself because of all the things I can no longer do the way I once did. He tells me I’m strong (even when I don’t feel like it); he doesn’t let me beat myself up if I go passed my limits and just need to crash for a day (or 20); he lets me feel my emotions (when my parents were big on cramming it down and pretending everything was fine).

But most importantly, he loves me, PsA and all. I think that’s a pretty huge deal.

So, thanks baby! I’m glad you’re along for the ride.

(And yes, that is us and our wedding party the day we got married. The title is from our song.)

UPDATED (12:26 p.m. 28 July 2010): Here’s a link to a round-up of everyone else who participated in this round of Patients for a Moment. Enjoy!

calamity! hilarity!

OK, so I was finishing my marathon sprint through Mariah’s blog (which I had tons of time for today, since my boss is super slow and super disorganized on our production day [I work at a newspaper] ), when I came across this lovely gem about her, her fiance, a bad magazine and a big jerkface.

I laughed out loud when I read this one. Then, I e-mailed it to myself so I could show it to my husband when I got home.

Seriously, if you don’t think this is funny, then I don’t think even more cowbell could improve your sickness.

friendship is rare

Guys. I was so down about how all-around gross the Percocet was making me feel, I forgot to revel in what was in all honesty a pretty awesome weekend.

Friday morning I met up with a friend who is leaving the area. We grabbed coffee and a croissant (her) and tea and a chocolate croissant (me) from our local grocery co-op. Then we sat outside for awhile and just talked about all kinds of things. It was great to see her, especially since she’s going to be time zones away. Since she’ll be driving nearly across the country with two small-ish children, I hope she has a safe and not too stressful trip.

Friday afternoon, after lunch with my boss and a former employee, I left work early to take a nap. This, friends, was a concession to the psoriatic arthritis. I knew that if I didn’t, I wouldn’t have had enough energy to go home after a full day of work and sit on the couch. So, I napped. And it wasn’t one of those terrible naps; you know the ones. You fitfully doze in and out of sleep and wake up hours later feeling more exhausted than when you started. This was an awesome nap.

Anyway, a few hours later I woke up and my husband made me a lovely mug of tea with some honey. Somehow, he knows better than I do how much honey I take. Whenever I make it, it’s always too sweet or not sweet enough. But, that aside, I make some of my delicious Caesar salad with the homemade dressing and headed out to a friend’s apartment.

Now, apparently since I left my part-time retail endeavour a few weeks ago, a ton of people have quit or will be quitting. (I won’t lie; this fills me with just a smidge of malicious glee.) So, one of the few that are left decided to host a potluck and invite a bunch of people from the job.

It.

Was.

Awesome.

Ironically enough, when I was working that job (plus my 40-70 hour per week full-time gig), I wouldn’t have had time to hang out with all of my great co-workers. But I was there, laughing and joking and chatting it up with a bunch of lovely people. I was one of the first to arrive (around 7 p.m.) and one of the last to leave (around 2:30 a.m.). I don’t think I can overemphasize how impossible it would have been for me to a) be up that late, b) been engaged with that many people and c) felt as normal as I did had I still been working two jobs. Even so, I felt pretty luck that my PsA decided to take a hike for the night.

Sure, I paid for it the next day and the next, and I’m still paying for it. Sure, I paid for it the next day when I couldn’t even handle 1.5 hours at the mall with another friend from out-of-town who was visiting. (Seeing her was wonderful as well.) But it was totally worth it. I would do it again in a heartbeat. Seeing people other than my co-workers and , as much as I love him and love spending time with him, my husband was pretty restorative and made me feel more like myself than I have in a long time.

So, here’s to a great weekend with lovely friends and all of the things we do that may hurt in the short-term but are so worth it in the long run.

(Image via We Heart It.)