Thursday, May 30, 2013

Solidarity



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 colours and inexpensive, but well made clothing. "I just have to check…" I said and zoomed in to see if there was anything interesting. I thought The Boy was right behind me, but he elected to stay outside because he thought I said "just a sec."

Now, I'm not a browser by nature. I will move through a store at a fairly brisk pace, scanning racks for anything that looks interesting. I've been known to (correctly) assess the lack of anything interesting in less than a minute. However, on this particular day, I did find something that qualified as interesting, grabbed it and lined up by the cash. 

After a couple of minutes, The Boy appears next to me.

"I thought you were just going to be a minute," he says. Before I can gather enough breath to reply, the man in front of me turns around, exclaiming, "dude, is this your first day?" He then continues to expound upon the stereotype about women and shopping.

"Normally she's not like that," The Boy says. Wise of him, that was. With this token nod to actual reality delivered, the two of them engage in a brief but spirited exchange of opinions about women and shopping. The guy behind us joins in. His female partner and I appear to be invisible.

And that's when I realized I was in middle of a Bro Moment. I've seen them before, both in real life and in movies, but not actually ever been the source of one.

It was pretty entertaining.
   

Monday, May 27, 2013

HealthCentral Facebook Chat

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.

Friday, May 24, 2013

It's Heeeere...

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, achieving subtle differences that makes it look attractive, yet easy to read


In February, my lifelong dream of having a book with my name on it came into being when the book was published as an e-book. It was overwhelming and joyful. Holding a physical copy of my book was a completely different experience. For a book nerd like myself, it was indescribable.

The Book Book is available on CreateSpace, Amazon US and Amazon UK
    



Thursday, May 23, 2013

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 entertainment media. Everyone were talking and writing about it. Of all the roles she's inhabited, this is arguably the most badass!"

You can read the rest of that post here.
  

Tuesday, May 21, 2013

The Annual Tulip Walk - for Beth

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 different color. I'm not thrilled to bits with this one — it's like it can't quite decide which colour it wants to be — but I love seeing it up against the old wall of the cathedral

 

Had to go see the beautiful white and purple tulips once more before I moved on. I wasn't the only one

 

A bit further east, there's an area by a beautiful fountain where someone else has been quite unrestrained in decorating with tulip bulbs. I had shots of these last year, too — they look like faerie ballerinas. I wanted to see what my new camera could do with them

 

It certainly captures red well, something my previous camera had some trouble with

 

Found this heavy triple-layered bloom resting its head, no doubt tired of all the dancing going on around it

 

am I the only one hearing Tchaikovsky?

 

There was another row of dancers, dressed like creamsicles to stand out a bit

 

At the very end, I found this beauty.


Thank you, Beth.
  

Friday, May 17, 2013

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's ever been before.
    

Thursday, May 16, 2013

4 Years

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.
  


Monday, May 13, 2013

A Smack Upside the Head


"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 series of tasks that had to be done, instead of projects that gave me joy.

It's funny how when the stress reaches a certain level, you don't notice it's there. Well, you notice that your life has become pretty miserable, but you don't associate it with burning through your energy at the speed of light. All I knew was that I woke up tired every day and by the time the day was over, I was so exhausted I wouldn’t as much fall as plummet into sleep. The biweekly B12 shots that used to turn me into an energizer bunny only enabled me to maintain, pain levels were increasing to the point that my right shoulder was starting to show signs of the kind of flare that would bench me for weeks. I have plans to take some time off in August and was making jokes about "if I make it that far," only it wasn't really a joke. Everything felt urgent, every day I was convinced that if I didn't get my work done, the world would end. And worst of all, although I was doing a lot of writing, I wasn't having fun. In fact, I was downright crabby. And still, somehow, I didn't clue in.

Thankfully, others noticed.

A week ago, I was having a chat with RA Guy about something else entirely. Before I knew it, it had turned into a very loving, gentle and effective smack upside the head. My head, to be specific. He reminded me that there is no rush with producing the next book. That in fact I haven't taken time to really enjoy having a book. 

Let me rephrase that: Having! A! Book! Here I am, my lifelong dream has been realized and I'm too busy to appreciate it. Too busy to let it bloom. Too busy focusing on what happens next to pay attention to what's happening in the present. And in the process, I was being pummeled by my self-induced pace.

I just finished David Sedaris’ latest book and something he mentioned in one of the essays stuck in my head. Someone had been to a seminar on becoming successful, during which the participants were asked to imagine a stove with four burners, representing family, friends, health and work. They were then told that in order to be successful at any one of these aspects in life, you have to turn off one of the others. In order to be very successful, you have to turn off two. That’s fairly thought-provoking. 

In the last year or two, as my work load has increased, I’ve turned off the friend burner. Not entirely — perhaps it's more accurate to say that I turned it down — but there's only so much of me to go around. Blessedly, many of my friends have been in the same situation, so the shrinking of the friend space wasn't always only on my end. Sometimes it was, though. More recently, I seem to have turned off the health burner. And that's very definitely a no-no when you have RA. In retrospect, I wonder if my months-long simmering flare might be connected to this.

As Eduardo was talking, I started crying. Not out of frustration or hurt feelings, but from relief. With every word he said, it was like he removed another set of blinders from my eyes and I could see the insanity that my life had become. I could see how far from grounded I was and how far I'd come from honouring the gift of my second go at life. Sure, busy is good. But the kind of busy that stops you from feeling joy? That's not the point of living, is it?

There is no rush. This is my journey, not someone else's. It is up to me to make it something uniquely mine, something that respects and reflects all of who I am, not just the part that thinks I'm invincible.

So I've stepped away from writing Book Two. It needs to percolate some more and I need to rediscover writing for the joy of it. I need to create some mental space to think, to reconnect with my friends, with who I am and what I believe. To remember that yes, the work is important, but I can't lose the other things that make my life joyful in the process.

A week ago, a good friend gave me the gift of perspective. And I'm grateful.

I am exactly where I'm supposed to be.
  

Thursday, May 09, 2013

Spring!

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 green


and while I was there, I had to capture the two-toned water and the happy sails


a few days later, I went the other way, up to St. James Cathedral and found these beauties in the park


I have no idea what this is, but it looks like the flowers have mohawks


There's nothing like a spring sky


or a spring flower bed, for that matter




 

These look like cups of sunshine

 

I hung out by the fountain watching the birds and the water play


 

And then this guy summed up how we all feel. Spring is finally here!



   

Wednesday, May 08, 2013

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 range of motion exercises, then?" they chirp optimistically.

 
And that's when I tell them that my life is a range of motion exercise."

You can read the rest of that post here.
  

Thursday, May 02, 2013

She Flew




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 the experience and for the better. We will accept less crap from the system that is mandated to help us, we will push ourselves to our limits and beyond to achieve because she told us we can and we will fly, because of her. 

I haven’t been as much a part of her life as I’d like lately – my fault entirely. Still, Beth has been part of my every day in the way I think and try harder. Reminders are around me in the Ghibli card she sent me from Japan where we said we’d meet for tea after we died. They are in the bandaged zombie cat sitting on my hallway dresser.

Richard Bach said "don't be dismayed by good-byes. A farewell is necessary before you can meet again. And meeting again, after moments or lifetimes, is certain for those who are friends."

Beth and I will meet again, whether it is in the garden on the Ghibli card, in the afterlife of picnics surrounded by cats and cherry blossoms, talking for eternity without worrying about hurting or turning funny colours. Of there's such a thing as reincarnation, we’ll meet in our next life and then we won't be at different ends of the country.

Beth flew. Her light remains.
  



Wednesday, May 01, 2013

40 & Fun

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 room, kindred spirits found each other and disappeared into playing games


Morgan found a new biggest fan


We didn't set out to bring a magician to the party, it just sort of happened.


Liam, a bit of an amateur magician himself, was fascinated 


Morgan helped Janne open her present — we'd all chipped in to get her a really good camera


and then Liam helped Janne blow out her candles before the room caught on fire (yes, we did use 40 candles on the cake)


 During cleanup, Scott acquired a new dog  when Liam temporarily transformed


and Ken acquired a growth that made it difficult to walk


At the very end, everyone wanted a photo of three generations of the Andersen family and we briefly knew what it's like to be in front of a herd of paparazzi.

Photo by Ken
 
It was a very good day.