Wednesday, July 31, 2013

Chronic Resilience: An Interview with Danea Horn

I've had the opportunity to interview a terrific woman for who's written a book on stress and chronic illness. Lots of great tips and it's taught me a lot. I'm brewing another post. as a result, but that's for next week.

"Chronic illness adds a unique kind of stress to your life that can be hard to adjust to. In her new book Chronic Resilience: 10 Sanity-Saving Tools for Women Coping with the Stress of Illness, Danea Horn provides a blueprint for coping with the challenges of chronic illness. Each chapter includes a discussion of the issue at hand, practical and very doable suggestions for getting back in control and interviews with women who live with a variety of chronic illnesses. In order to help you make the theory real for your own life, Danea also includes journal exercises to help you think about how you deal with chronic illness and reframe this so you can live in a more stress-free way. As I was reading the book, I nodded in recognition to many of the points Danea brings up. It prompted me to take a closer look at how I deal with stress and I'm already implementing some of her excellent tips. This book is a must-have for women living with a chronic illness. It would also make a great gift for anyone who's struggling with managing stress, whether they have a chronic illness or not.

Earlier this week, I had the opportunity to speak with Danea about her life and her new book."

You can read the rest of the post with the interview on HealthCentral here.

Monday, July 29, 2013

Judging a Book by Its Cover

This is the second post in a series about publishing my book independently. 

Once I decided to publish Your Life with Rheumatoid Arthritis independently, the next task was to figure out exactly how to do it. That meant breaking down the process into separate tasks and to figure out what those were, I did a lot of research. Throughout my reading of numerous books — David Gaughran’s Let's Get Digital is fantastic — and more blogs than you can shake a stick at, two things became evident. One, indie authors are incredibly generous with sharing their experience and advice. And two, although you can learn to do a number of things yourself, there are two aspects of publishing a book for which you should hire a professional: cover design and editing. Both of these are essential to the first impression of your book by presenting a professional, high-quality product. Because if you plan to make a living from writing, you intend to be a professional and as such, there are things you just don't skimp on.

I have been very lucky — or somewhat prescient — when making friends. Dan Handler and I became friends 25 years ago and I've always loved seeing the things he's designed, both as a graphic designer and an artist in many media. He has a unique style and truly amazing talent that really speaks to me. Until very recently, I've enjoyed his art in a more personal way, being the lucky recipient (or purchaser) of several wonderful pieces. Naturally, he was the first person that came to mind where there was time to get a cover for my book. Luckily, he agreed to work with me.

The first step in the process was telling him about my book and talking about what sort of themes I liked. I told him that the Your Life with Rheumatoid Arthritis series was about the journey from being stuck and scared, through empowerment to living well with RA. I said it was about finding peace and freedom and then I told him that I liked ocean-y and sandy themes.

It is a mark of a truly gifted designer when they can listen to such vague prattle and create something that doesn't look at all what you had in mind, yet perfectly conveys what you meant.

And so it was with Dan and me. He gave me a number of what I have since learned are called preliminary comps using different concepts to interpret what I babbled on about. There were covers with water, others with sand, covers with my photo on them and covers without. As I leafed through them, my heart sank, because although they were all beautiful and evocative, none of them grabbed me. And then I came to the very last one.

It was love at first sight. It was nothing like what I’d imagined, but it was the concept of the book made real in a graphic. It was so perfect in fact, that we only did minor tinkering after that first comp. We brightened and enlarged the title and my name a bit for easier reading on any ebook reader and moved the opening in the wall a little to the right. And that was it. Of course, these changes happened on and off over the course of a year — the initial cover was created in early 2012. As I was rewriting the book and learned more about publishing, certain things required adjustments in the cover.

Throughout the design process, Dan was nothing but patient with my questions and several "just one more" changes. I knew nothing about graphic design when we started and working with Dan was like taking a master class in the art of creating a graphic representation of an idea. After all these years of being his friend, I got to meet the pro side of him and it was a trip worth taking. He'll be the first person I call when I need a cover in the future. And Dan? I promise I'll be less of a nightmare the next time!

If you're looking for a graphic designer, you can do no better. You can contact Dan at Handler Studios. 

Friday, July 26, 2013

Book Review: Joyland

It's been forever since I posted a book review and I'm not quite sure why. It's not that I haven't read good books — I have and plenty of them — but every time I finished a book worthy of a review, several days would pass in a flurry of work stuff and the moment passed. It turns out that a review should be written pretty close to finishing whatever you're reviewing.

A variety of circumstances have conspired to give me some extra free time right after reading a good book and not surprisingly, the book that prompted this review is by Stephen King. I seem to recall that I often review his latest book.

Joyland is King's experiment with a fairly straightforward and old-fashioned thriller (cue the cover) 

Of course, being Stephen King, there is a teensy bit of the supernatural element. The story is a trip down memory lane, "written" by a man in his 50s about a summer job in 1973 that turned into so much more. Devon Jones — one of the things I admire about Stephen King is his talent for coming up with perfect names for his characters — is 21 years old and recovering from a broken heart. He's doing this in a small town in South Carolina, working for a rickety amusement park by the name of Joyland. He makes friends, nurses his broken heart, learns a lot about being a carny and dips his feet into the mystery of who killed a girl in the haunted house. A girl, it is said, whose ghost still lingers in that dark ride.

And that's it, the story in a nutshell. Except it's a story of so much more. It's about what happens in the months when a boy becomes a man, it's about parental love and the different ways a parent protects a child — sometimes lightly enough to let them fly, sometimes so tight it breaks the bond. It's a book about other forms of love, too, between men and women, boys and girls, between friends and all the different ways that love can be expressed. It's about doing the right thing, even when it's hard or scary. It's about endings and beginnings, and it's about wanting to hold on — to the past, to love and to a little boy named Mike.

Joyland is short by King's standards. Less than 300 pages worth of a perfectly crafted story. It is vintage King in that it takes its time, builds the story and the tension at just the right pace and in such an effective way that you don't realize you've become completely creeped out until it's too late. It sneaks up on you. The story sucked me in completely and it wasn't until a day or two after finishing the book that I realized I wanted to read it again to study how he did it. I also realized that I'd probably get sucked right back into the story and forget to pay attention to the craft.

This review would not be complete without raving about the narrator, Michael Kelly. He is nothing short of brilliant, without being flashy about it. He perfectly captures the hint of gangly awkwardness that still hangs about a 21-year-old male. Kelly pulls a variety of accents out of his hat, from the creak of Brooklyn to the drawl of South Carolina and then gives each character, male and female, so unique a voice that you recognize them without being told who's speaking. He manages to embody the story, while stepping out of the way to let that story take center stage.

Needless to say, I highly recommend Joyland and although I suspect it's a grand read in a regular book form, give the audio version a go. You won't regret it.

Thursday, July 25, 2013

Writing to Heal: CreakyJoints Memoir Course

Combining two places that I'm proud to write for, I did a post about the new CreakyJoints memoir course for HealthCentral:

"Have you ever wanted to tell the story of your life with RA or other types of arthritis? Now you can! CreakyJoints, the arthritis community started by the nonprofit Global Healthy Living Foundation (GHLF) have created a free memoir writing course for people living with different types of arthritis."

The rest of the post is here

Monday, July 22, 2013

Why Go Indie?

When I started writing Your Life with RA, I fully intended to publish the traditional way. Because of the vagaries of my own RA, I didn't think I could deliver a large manuscript on a deadline, so the idea was to write a book first, then shop it around to an agent or publisher. Decent plan, right?

About halfway through the writing process, a revolution happened. E-book readers and tablets took off, Amazon started their Kindle Direct Publishing program and writers started doing it themselves. I was aware of it, but still really locked into my original plan. Then on an evening in early 2012, The Boy and I had a conversation. As he is always way more ahead on technological issues than I am, he’d been nudging me for a while about publishing The Book as an e-book myself and I had been resisting. I had been doing some reading, though, and apparently, there’d been a significant degree of percolating going on in the back of my head. It all came together in that January discussion and from then on, there was no looking back.

I was going to publish my book independently.

There were a lot of arguments supporting this decision. Traditional publishing has changed — it’s increasingly difficult to get published as a new writer and when you are a new writer (as opposed to Anne Rice or Stephen King), you don't have a lot of influence in the process. I have friends who are authors and have seen them struggle being heard when their vision of their book differs from the publisher’s. I've seen them do most of the promotion work themselves and I've seen them not get paid very much in royalties. Which, to be fair, is somewhat understandable — when a publisher takes a chance on a new writer, they're the ones who are financially out on a limb. Cover design, editing, printing, etc. all cost money and those services are supplied by the publisher. Still, at the end of the process, the author him/herself don't make a lot of money, whereas if the book does well, so do the agent and the publisher.

Publishing independently, on the other hand, means you take all the risks, you bear the initial financial cost — hiring a cover designer and editor are key to being professional and more about both in the coming weeks — and you do all the promotional work. You also reap the rewards, though. If you are even the slightest bit of a control freak, you'll revel in the fact that, as the publisher of your book, you are in full control of all aspects. You hire the cover designer you want and decide what the cover should look like. You find an editor you can work with. You do the formatting of the e-book yourself — or find someone who can do it for you (blessedly, my partner is a geek) — and have final approval of what it looks like. And at the end of it all, when you publish your e-book through Amazon’s KDP and Smashwords, you get 70% royalties. That’s a big difference from the estimated 10-15% you receive as a new author with a traditional publisher. And it means you actually have a chance to make a living from writing books.

I am fond of saying that the best thing about being an indie author is that you control everything. This is usually quickly followed by me saying that the worst thing about being an indie author is that you control everything. In addition to the aspects I mentioned above, you also have to figure out tax things, where and how to get ISBNs, learn marketing and promotion, and the list goes on. Thankfully, there is a large community of indie authors who are willing to share their hard-won experience and by reading a large number of blogs and independently published e-books, you figure it out. There were times, though, that I wished I could just focus on the writing.

Which leads me to the heart of the story where my plan to publish independently evolved. I was lucky that I had The Boy by my side throughout the daunting maze of information. He was my sounding board, my research partner, the guy who doublechecked the IRS forms that were written in such a way they made my ears bleed, dealt with the formatting of both e-book and paperback editions and together, we midwifed my baby into being.

Five months after Your Life with Rheumatoid Arthritis first saw the light of day, I have absolutely no regrets. The last year and a half has been frustrating, exhausting and there's been some degree of anxiety and stress. It's also been filled with excitement, learning new skills, gaining in confidence and having the best time I've ever had with work. When I started writing my book, I had no idea it would end up with me having my own business. Life is funny, but what a ride!

Thanks for being with me on that ride.

Crossposted on Your Life with Rheumatoid Arthritis

Wednesday, July 17, 2013

Learning from Chronic Illness

Living with a chronic illness — any chronic illness — is an excellent teacher. It may not be a learning environment most of us would choose, but once there, living through the experience can teach you some important new skills.

Balancing everything that goes into living with a chronic illness is a full-time job. You're keeping track of the right amount of medication to manage your symptoms, while making sure the side effects are down to a dull roar. Added to that is paying attention to how much rest you're getting compared to your activity level. Another ingredient is balancing your diet, not just to stay healthy, but also to help with certain side effects. If you have pain, you have to pay attention to rest, medication (dose and interval), treatments to help with pain and finding the right pillow to support parts of your body when you do finally get into bed. And don't get me started on the balancing act of being a frequent flyer in the healthcare system — there are labs, appointments with multiple specialists, physical therapists and other supporting players and the list goes on. It's no wonder that people who are new to inflammatory arthritis have the urge to curl up in a fetal position in a corner.

The good news is that over time, it all becomes second nature. Once you're through the first year, you sort of hit a groove. Life may not be a dance on roses, but you're starting to figure it out. A couple of years in and you got the mad skills of a master project planner. Plotting to take over the world pales in comparison to balancing life with a chronic illness. You're balancing everything, instinctively keep track of meds, rest, your body's messages and scheduling the miscellany of appointments and it all more or less works.

Until someone or something throws a spanner in the works.

I have a slight problem saying no to interesting things and as a result, I'm somewhat overcommitted with wonderfully fascinating projects. It requires a lot of energy, something that's a bit of a challenge between the chronic fatigue that accompanies RA and fibromyalgia. One of the essential tools in my bag of tricks is biweekly vitamin B12 shots. Without them, I wouldn't have the energy to do what I do.

Two weeks ago, I went to my pharmacist to get another vial of cyanocobalamin (the fancy name for B12) and was told they were out. Not only was my pharmacist out of stock, so was every other pharmacy in the neighborhood. It turns out that there is a B12 shortage.

And that's when the panic hit. Because without B12, I have maybe half the energy I do now. Although, calling it energy is a misnomer. As many of you reading this know from first-hand experience, living with RA and fibromyalgia means carrying around an overwhelming fatigue. Not only do you feel as if you're physically dragging yourself through molasses, but your mental sharpness suffers, too. And there's no way I can meet all my deadlines with both my mind and body lagging. An exhaustive funds of pharmacist in my immediate neighborhood came up empty. Then I talked to my doctor and thankfully, she has a bit of a stash. So does my naturopath. There are also other options, such as sprays and tablets. I should be okay.

Regardless of what the spanner is — a drug shortage, a flare, extra stress at work — keeping your carefully organized system on an even keel is essential. Your ability to keep going depends on all its individual components staying balanced. But every now and again, life throws you a curveball and you go into crisis management mode. First you panic, then you activate your mental list of every connection and workaround you know when you start solving your problem. Because that's another important skill chronic illness teaches you: thinking outside the box. You are the master project manager with the kind of resources a White House crisis team would envy.

Now, if only the University of Chronic Illness would issue diplomas, we'd be shoe-ins for all sorts of important jobs…

Addendum, July 17: I've just been told by my pharmacist the the B12 shortage is no more. Phew!

Monday, July 15, 2013

A Matter of Millimeters

I am extremely thenthitive. Perhaps not so much emotionally, but physically? Fuggedaboutit. Decades of RA, especially the wreckage after my 2004 flare, combined with fibromyalgia has made me as sensitive as the girl in Hans Christian Andersen's The Princess and the Pea. My body works all right within my current parameters, but if you mess with my environment, even just a little, things get unhappy. This is why. I can be sent into a panic by a broken microwave, why I hold on to a pillow even though it is falling apart and my floor is littered with down every morning. And it is why I have not yet instigated getting a new power wheelchair, even though Regan is showing signs of needing replacement sometime soon. Because the last time I switched from an old chair to a new one, it took six months (and a lot of pain) of slowly transitioning between the two.

Despite my attempts to control my environment so there are no physical changes, life has a tendency to happen, and so does change. More specifically, things happen with equipment. Some of that equipment is my wheelchair. More specifically, for today's purposes, to my left foot rest.

My left foot rest takes a pounding. It supports the weight of my left foot, braced against that foot rest due to my fused left knee. It also often supports my right leg, as I sit most comfortably with my legs crossed, or both feet braced against the left foot rest. This is also the foot rest that takes my weight when I left my derrière to pull up my pants. Not too long ago, I realized that I actually do a fair bit of weight bearing for someone who sits all the time. Said weight-bearing happens primarily on that foot rest.

And then there is the contributing factor of the 14 pound lap cat.

For the past couple of years, it's gone wobbly every six months or so. There's a brace at the top of the foot rest holding it against the frame of the chair and what with the aforementioned weight-bearing, it wears down over time. A previous firm grip gets looser, just by a millimeter or so near the top. However, once you get to the bottom where my foot presses against the foot plate, that's translated into maybe a centimeter. Which makes me feel like I'm sliding out of the chair. It also moves my left leg down a bit, which pulls my lower back a bit out of whack.

And then the pain starts. Being pulled out of alignment initially affects only my lower back. Then the muscle pain start moving up and down, spreading into the rest of my back and my shoulders, as well as my legs and feet. That week between the wobbly taking effect and me being able to get it fixed, readjusted me quite significantly.

Aforementioned 14 pound lap cat wasn't pleased, either. The slightly lower footrest meant she couldn't sit on my lap without starting to slide.

A week and a half ago, I went to see David the Wonder Repair Guy at Motion Specialties and after adding a diagnosis of needing a new left motor, he replaced the brace. It's a quick job, the part cost $25 and after paying the bill, I was ready to go home.

Throughout the 30 min. drive home, I could feel my lower back moving back into its proper place. A continuous subtle shift in my spine, cascading into a domino effect of a shift in the muscles of my back, shoulders, neck and legs. And then the pain started. Because shifting back into the proper place hurts as much as shifting out of it. It usually takes me a couple of days to adjust.

Or that's what it should have done. Except it didn't. Instead, something else started getting wobbly. Instead of the wobbly moving the foot rest down, it moved it from side to side. Every day, it got a little worse in every day, pulling me out of alignment, except now it was the right side of my body. I ended up going in for an emergency repair, but not before posting this tweet

Because, really? This particular astrological pile of shenanigans can just got hang, as far as I'm concerned. It's not for nothing I've got an actual label for my posts entitled Mercury Retrograde.

Turned out it was good thing I got to the shop — a bolt had worked itself loose and the foot rest would've gone flying. With me quickly to follow.

Crisis averted, all I have to do is get my body to calm down after all these changes. It's taking a while. Part of the reason may be that Lucy has regained access to my lap and has been a barnacle for days. I suspect it may delay getting ahead of the pain by several days.

Monday morning P.S.: I wrote this post this weekend. Last night, the verdammte thing went wobbly again. Not as in above is loose kind of wobbly, but the other kind. Going back tomorrow. When's Mercury Retrograde over again?


Wednesday, July 10, 2013

Faces of Canada Day

Last Monday, I went to the St. Lawrence Neighbourhood Association's Canada Day party. The cloudy weather actually made it more enjoyable because it wasn't too hot. A great time was had by all. , including me, and not have a lot to do with

The festivities started off with a rousing rendition of Oh, Canada (in both national languages) and This Land is Your Land

Everyone was wearing the flag in different ways

This little guy wasn't sure about it all

The requisite speeches by politicians (blessedly short). Here the president of the SLNA introduces Pam McConnell, our City Councillor

Some people brought their friends

Kids having fun with the flag

People talking to their neighbours

and laughing with them 

Faces that had done some living

new (and not impressed) faces

Time travelers from the War of 1812

Even Mother Nature showed up

And then there was cake

We came to this country. 31 years ago and have never regretted it. It's become our new home and we have put down roots just as deeply as our Danish ones. One of the things I love the most about Canada is how welcoming everyone is. We may all come from different places, but we are all neighbours.

Thursday, July 04, 2013

Writing to Cope: A Chronic Pain Study

I recently had the opportunity to interview a very interesting woman for HealthCentral. She did a study of using writing as a coping tool for dealing with chronic pain.

"Chronic pain affects not just how you feel physically, but your emotional health, as well. Effective pain management addresses the physical symptoms, but must also help those who live with chronic pain cope emotionally on a day-to-day basis. One technique that been demonstrated to be helpful is positive writing intervention.

You may remember a call for participants for a study about chronic pain that we posted last summer. The researcher, Kathryn Lynn Ziemer has now finished the study, which was used for her dissertation for a Ph.D. in counseling psychology. A few weeks ago, I interviewed Kahryn about the background for thestudy, the results and what happens next."

You can read the rest of the interview here.

Tuesday, July 02, 2013


It's a very festive week, what with Canada Day yesterday and Independence Day on Thursday. Clearly, something needed to be done to celebrate. And I know just the thing…

A free download!

Several years ago, I entered a memoir contest held by Homemakers magazine, a terrific little magazine that I faithfully read every month for several decades. Belying its domestic title, it was one of the most progressive and feminist magazines in Canada for a really long time. Also, it had great recipes. And in 2007, a memoir contest.

Much to my delight, I won second place and for years, you could read my memoir on their website. Alas, Homemakers recently disappeared from the Canadian magazine market, much missed in my family and among many other women my age. So now that Unbound no longer has a home on the web, it was time to do something else with it.

And here it is.

Unbound is the story of my childhood with juvenile arthritis. It is a story of loss of ability, the isolation that comes with illness in childhood, but above all, it is a story of how I found freedom and independence.

Unbound is free and is available as a PDF for download here.

Monday, July 01, 2013

Happy Canada Day!

And the best ever version of our national anthem. Perhaps not the most emotionally stirring, but so wonderfully Canadian