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Showing posts from May, 2013

Solidarity

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I've been a bit absent this week — okay, a lot absent. As described on my Facebook page, I hurt my right hand this weekend. More specifically, the tendon in the knuckle of my right middle finger is having a massive conniption fit. It has been opined by "funny" people that perhaps I shouldn't Proffer the Penguin - thanks to Gaina, our new term for The Flipper - quite so much, but I don't think that's what did it. Regardless, this is what my hand currently looks like


and it effectively prevents me from doing almost everything. Here's a story to keep you entertained while I sit still and heal.
Last weekend (before the injury happened), The Boy and I went out to do a photo shoot with the paperback edition of Your Life with RA. Which has made me vaguely consider bringing a copy everywhere I go and doing a sort of ongoing Book Book travelogue. Yes? No?
Anyway! On the way home, we passed my favourite clothing store — favourite because they have lots of bright colo…

HealthCentral Facebook Chat

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I'm the designated expert for tomorrow's HealthCentral Facebook chat about RA and arthritis. If you have any questions, come on over and join us!


Note: I hurt my hand and we have therefore decided to we schedule this chat. Will keep you posted.

It's Heeeere...

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I'd like to introduce you to the paperback edition of Your Life with Rheumatoid Arthritis. To differentiate this from the ebook edition, we call it the Book Book.


In unguarded moments, I call it My Preciousss

It's got an incredibly beautiful cover by Dan Handler. The man does magic, transitioning an e-book cover into a wrap-around Book Book cover that has flow and cohesion. 

Publishing a book requires an endless number of decisions, one of which was about the font we should use. We needed to find one that happened in the background, making the text easy to read, yet fit the book and me equally. We finally narrowed it down to a couple of options, one of which was called Minion Pro. I wanted to use it just for the name alone, but it also happens to be the one that works the best. This tickles me to no end.

Once we found the font, The Boy set to formatting the interior. E-book formatting doesn't work in Book Book edition, so we had to rework it substantially. David did magic, a…

The Quest for an RA Spokesperson: Looking for Our Jolie

One of the biggest barriers to creating effective awareness about RA is the lack of an icon who can personify the disease (and it wouldn't hurt if they were sexy, too). This week on HealthCentral, I mused on the search for a spokesperson:

"RA needs a spokesperson. Someone in the public eye. Someone who is respected and admired. We need someone to whom people will pay attention, someone who can in one moment teach the world about RA.

Last week, Angelina Jolie did that for breast cancer. She shared her story about being one in a fraction of women who have a faulty gene which greatly increases their risk of developing breast cancer. Her courage in coming forward didn't just create awareness about this gene, but also made a lot of women decide to be more vigilant about mammograms. On top of that, Jolie also spoke about the financial barriers that may prevent women from getting potentially life-saving tests. The story went viral, crossing boundaries between news and ent…

The Annual Tulip Walk - for Beth

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This one's for Beth. She often challenged her friends and readers to get out to enjoy life. Since so many of us live all over the place, we are not able to be there for her memorial. Someone had the idea that on a particular day, we should all get out and do something in her name. Linda suggested we do it on May 19, which would have been Beth's 43rd birthday. I don't have a corset or anything with skulls(the suggested attire), but I do have a camera and flowers in my neighbourhood.

Every year, the gardeners who take care of the 18th-century garden in St. James Park plant a sea of tulips and every year, they're a different color. Part of the excitement of spring is waiting to see what colour they'll be this year. Some years are better than others and that certainly includes 2013. I mean, will you look at this!



They look like small globes of captured sunlight.

Just on the other side of the bed, I found this blazing away



At the front of the church, they've chosen a d…

Juvenile Arthritis, Blindness and Living with Joy: An Interview with Joy Ross

I love my job with HealthCentral for many reasons. One of them as I get to talk to a lot of really interesting people. A few weeks ago I met Joy Ross — a wonderful, inspiring and positive woman. She was a joy to interview and very graciously shared her story:

""I am happier without sight than when I could see."

Joy Ross is 36, lives just outside Portland, Oregon. She has been happily married for 12 years to her husband George and the mother of two beautiful daughters, Isabella (10) and Georgianna (7). Joy has had juvenile arthritis (JA) since she was three years old. As a child, her disease was primarily expressed through uveitis, an inflammation of the eyes. Joy had her first cataract surgery at age 5, but as she grew up at a time when there were no treatments for JA and RA, her sight got worse as the years went on. When she was in grade 7, the JA spread to her joints."

You can read the rest of the interview here to find out why she's happier now than she…

4 Years

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Photo by Janne/TinkMama
Four years ago today, The Boy and I finally realized what had been blatantly obvious to everyone else for several months: that we belong together. It was the best decision I've ever made— every day since has been filled with love and laughter. David is everything I've ever dreamed of in a partner and then some. 


I am a very lucky woman.



A Smack Upside the Head

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"How do you know when you're stressed?" Marianna asked this in her most recent giveaway (g’ahead, click and enter, it's open until May 19).

It turns out that my answer is I don't.
It's been pretty obvious — even to me — that things have been very busy for a long time around here. My level of activity was already fairly up there and then the book came out. Which lead to a blog tour - exciting, fun and wonderful, but also a fair amount of work. There was getting the manuscript ready for the paperback version, the opportunity to write for CreakyJoints — also exciting and wonderful — planning for May’s Arthritis Awareness Month on RAHealthCentral, exciting and interesting planning going on at Show Us Your Hands!, several community projects that were also very interesting, I started writing Book Two in the Your Life with RA series and I could go on. Won't, though. It's stressing me out just to think about it again. Suffice it to say that it all became just a…

Spring!

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I'm always a little startled by the suddenness of Canadian spring. Last Wednesday, I was wearing socks and winter sweaters and two days after that, it was warm enough for bare feet, T-shirts and shorts. Not that I wear shorts, but a lot of other people were. 

Everything's a little extra sudden this year. I use the side street below my window as a measurement of how far along spring is. The hedge on the west side is the first thing in the neighbourhood to go green and means the official start of the season. The poplars on the side are the last to pop, marking the official full embrace of spring. This year, both are popping up the same time.

After such a long winter, it is nothing but joy to see green growing everywhere and flowers blooming. Naturally, I headed out with my new camera, looking forward to christening it with spring rather than winter pictures.

I started out on Sugar Beach when the willow trees were in that just-popped stage where they look like clouds of delicate gre…

Proud to Be Us/Exercise with RA

Things have been just a tad busy around here. As evidence herewith my CreakyJoints and HealthCentral posts for this week.

First, I write about being proud of who you are and celebrating our community for Arthritis Awareness Month:

"Happy Arthritis Awareness Month! This is the annual 31 days of making the over 100 different types of arthritis visible and a reminder to be proud of who we are.

Proud? Of having a chronic illness? Yes, exactly."

The rest of that post is on the CreakyJoints site.

On HealthCentral, our big project for Arthritis Awareness Month is a video showing different levels of physical activity for different levels of RA. It stars several members of the RAHealthCentral team (including me, my butt and Lucy). My companion post is about finding ways to be physically active when you have severe RA:

"Every now and again, I run into an enthusiastic health professional who opines that I should exercise. I try telling them that exercise makes me flare. "What about…

She Flew

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Beth has died.
This shouldn't be a surprise — she has lived with autonomic failure for years. When we first became friends, we did so knowing that she was going to die. At the time, she estimated another year, maybe two. That’s six years ago. Somehow, I had begun to think that Beth was perennial.
Beth was strong, fierce, and the smartest person I've ever met. She was our white knight, living to fight injustice, to bring love to as many people as possible and to challenge the system that deals with the sick and disabled. She lived more than anyone I've ever known, did more, fought harder. Linda, her wife of 20 years, says is much better than I could ever do.  My heart is with her and their good friend Cheryl.
She challenged so much and so many. On a personal level, Beth challenged me to think harder, feel more deeply. Beth had expectations and it was a joy to try to rise to them. She will have ripples. Those of us who were privileged to share part of her life were changed by t…

40 & Fun

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Last weekend, we celebrated my sister's 40th birthday. We deliberately postponed the grand party from month, thinking that April 20 would for sure have nice weather so we could send the kids out to the playground.

It was freezing. With snow.

We stayed inside and a grand time was had by all.

Naturally, the Birthday Goddess was issued a boa to accentuate her fabulousness


And serenaded as befits the guest of honour


She also had a special seat with her very own balloon (here Janne's caught in a brief moment of not speaking. Andersen women talk a lot, but maybe that's not a surprise to you?)


Aryka liked the balloons, too. She grabbed hold of one the minute she entered the room and didn't let go. I suspect that evening, she fell asleep holding it. For all I know, she might still have it trailing behind her.


Marilynn, Aryka's mom gets more beautiful every time I see her


As do her siblings, Nick and Kirsten. Claire's very much present in all of them


At the other end of the roo…