Monday, September 30, 2013

Arthritis and Employment: Show Us Your Hands!

September is Arthritis Awareness Month in Canada. As part of this, I'm doing a series of posts about initiatives by different organizations. The common theme of these will be dealing with the topic of working when you live with arthritis. 

Earlier this month in Making It Work, I wrote about the Arthritis Research Centre of Canada's study of a self-management program to help people with arthritis stay employed or become employed again. Last week, in Fit for Work, I wrote about The Arthritis Society’s work to help employers develop guidelines and recommendations to accommodate employees with arthritis. Both of these programs are works in development that will lead to better conditions for those of us who live with one of the 100 different kinds of arthritis. But what might those conditions look like?

As I've shared briefly a few times, Show Us Your Hands! has spent a significant portion of this year re-examining how the Directors’ inflammatory arthritis affects how we work and developing processes to support that. In effect, Show Us Your Hands! is a case study for an organization that supports and accommodates arthritis and thereby benefits from the contributions and talents of the people involved in the organization. Today's post peeks behind the scenes to show you what we did, how we did it and what came out of it.

We started the new year by adding several new Directors to the team, then kicked it into high gear with pursuing our goal of becoming an official nonprofit. We got a bit excited and worked really hard. Then we lost one Director due to health reasons and the replacement also had to bow out for the same reason. Shortly after that, our President Eduardo Flores (a.k.a. RAGuy) experienced an intense flare that required him to step back, while he tried to find a way to deal with this disease. It became very clear that inflammatory arthritis was going to be a member of the team and that it would throw its weight around on a regular basis. We started having informal conversations about how to cover absences. This led to an official recalibration exercise in which the Board of Directors went back to the beginning and spoke very honestly about the impact inflammatory arthritis had on our lives and our abilities. 

“Earlier this year, when I had to step away from almost all of my commitments due to my health crisis, it meant the world to me to know that I had the full support and understanding of other members of the board. It made me realize that I hadn't experienced such a thing very often, and it really drove home the impact of what we are doing not only as an organization within the community, but also as a group of individuals who live with inflammatory arthritis.” (Eduardo Flores) 

The first step of our recalibration was to identify why we got involved with Show Us Your Hands! — what was it about the organization that excited and inspired us and what do we enjoy at work. Then we took a look at how inflammatory arthritis affected how we worked to better understand how to manage a team where every member lives with a chronic illness. We talked about how we reacted when flaring, other aspects of our lives that were essential and how we could prevent burnout, both psychologically and physically. 

[It was really meaningful to take] time out to think about what I wanted to achieve, what my drivers were and to understand those of my colleagues. (Sallie Ferguson) 

Once we had a deeper understanding of how our inflammatory arthritis affected us in the way we worked, we set about establishing organizational processes and structures to accommodate working with a chronic illness. We developed administrative structures to help ease workload for everyone, such as rotating the role of Chair of Board meetings and minute taking. We also have a central calendar that lists projects, project leads and deadlines to help us stay on track. This calendar incorporates an online "Break Room" where we can share aspects of our daily lives, as well as an area where we can share how our inflammatory arthritis is currently affecting us. Using cloud discussion documents keeps discussion centralized instead of cluttering up e-mail. Establishing generous deadlines — and then doubling them — helps keep us from getting overwhelmed and ensures that projects are completed without destroying our health.

We didn't stop with administrative structures, but also developed processes that support our team and builds trust, so we all feel safe in asking for help. Everyone's favorite is the buddy system. On almost every task, regardless of size, we have a lead and a secondary/buddy. This means that the majority of tasks are easier because they are shared, and that if at any time we experience a flare or aspects of our lives need our attention, someone is there to take over. 

The buddy system means  knowing that there is always looking out for me. (Cathy Kramer) 

It has been an incredibly successful experience, one that means we can support each other in ways that ensure that the people involved with Show Us Your Hands! can continue to contribute their skills and talents. Not only has our recalibration made us a better team, it has also made us a better, healthier organization.

This exercise has also had an interesting impact on our personal lives. Taking a step back and very deliberately considering how we work, how inflammatory arthritis affects our work and the role of stress management in preventing flares, has rippled into our lives in general 

I am constantly stopping and looking at what is going right and wrong in my life and trying to recalibrate.  This gave me new ways to deal with stress and most of all a reminder to stop and take care of myself first (Cathy Kramer)

It has taught me the importance of better managing my time, of better estimating the time and energy that is required to complete a commitment, and of being able to keep others updated when and if I should start falling behind, with no shame at all. This has allowed me continue to prioritize my health and my well-being above everything else, which in turn has allowed me to be not only more happy but also more productive. (Eduardo Flores)

This recalibration exercise has had a huge impact on how I think about work and stress and my RA. It, as well as the support of a team of wonderful people who have all become my friends, have helped me through some really rough times over the past 6-8 months. Thanks to what I've learned in this process about myself and about living and working with RA, I’ve come through to a better understanding of what I need to be happy at work and where it's important that I put my energy. (Lene Andersen) 

We hope that by sharing our experience, we can help inspire other organizations to recalibrate and change how they work. This can do wonders for the organization, not just in terms of helping their employees who have chronic illnesses and disabilities continue to be valuable members of the team, but can also have a beneficial effect on healthy employees. We hear so much about balancing work and life, but very few employers actually support this balance. 

Our hope is that we can be part of a movement to change that.
   

Thursday, September 26, 2013

Brave



The term brave or courageous is often applied to those of us who live with a disability and equally often, you'll hear me take issue with these bouts of admiration. And that's usually because these labels are stuck on us not because we did something particularly brave, but because we got on with life. Instead of sitting in rocking in a corner, we went to school or got a job or went out with friends for dinner or drinks or did any other of a host of actions associated with a normal life. Except because there's a disability involved, all of a sudden this is brave.

I remain steadfast in my position that getting up in the morning isn't particularly courageous and that bravery is about doing something scary when you have a choice to not. Living, as opposed to not, is just what happens. Sure, when you have a disability there are often more obstacles in your way, but does that mean that the label slapped on someone with a disability should more accurately be skillful

Brave is going toward something that has the potential for not just being difficult, but potentially dangerous. I think the four police officers. I once saw in my neighborhood running towards a fraught situation, guns drawn, were brave. Then I thought some more and realized that I also think that my friend Ken is brave when he rockclimbs on mountains (also a little crazy, but that's a story for another day). People who ride bikes downtown are brave. Single moms are brave and so are young people who go to school away from home for the first time and live in a dorm.

And that's when it hit me. I think we’re all brave about something, but we can't see it ourselves because it's part of our everyday. We look on the lives of others and see clearly where they are brave — in places that to them are merely life, but to us are unimaginable because we've never done it. And whether that is hanging upside down from a rock hundreds of feet in the air, running towards potential harm, raising children alone or moving to a place where you know no one, we are astonished that someone will do it, because we can't imagine ourselves choosing to be in that situation.

We see bravery in the unfamiliar. And whether that is merely lack of exposure or a lack of imagination remains to be seen. Often, we will find ourselves in a similar situation and realize that although it initially feels scary, we got through it quite all right. Does that make us brave all of a sudden? Is brave even the right word for actions that don't have the possibility of bodily harm in them? Because, regardless of what you say, I am still steadfast in my belief that simply living with a disability is not brave.

Which brings me to something that happened about a week ago the last time The Boy spent the weekend. My attendant had helped me get into bed, plugged my chair in to charge and after she left The Boy went to brush his teeth. Coming out of the bathroom, he smelled something burny. This turned out to be the charger for my wheelchair, which in less than 10 minutes of being plugged into the outlet had gotten hot — not warm, hot — and emitted the smell of burnt insulation. We unplugged it, I limped through the weekend without moving much to save battery and The Boy went home. On Monday, I got a new charger. Plugged it in for 20 minutes while a friend was here and that went well. Plugged in for an hour and a half during my Mandatory Rest Period and that went well, too. No smell and no heat beyond the slight warmth of a piece of electronics working. At the end of the day, I went to bed. And plugged my chair in to charge, knowing that the next time someone would be in my apartment would be six hours later.

As I lay in bed, my mind obsessed over the temperature of my charger and the yawning chasm of time ahead of me before the next attendant came and I would be able to get out of my bed. It took a while, but at the end, I decided to go to sleep. I remember making an active decision to trust Dave the Wonder Repair Guy when he said the problem was my old charger. I remember making an active decision to trust The Boy when he told me that the plug of the old charger going into the outlet wasn't hot when he removed it. And I remember thinking it would be interesting to see if I woke up burned to a crisp the next morning. And then I went to sleep.

For the first time in my life, I'll cop to it: that was brave.
  

Wednesday, September 25, 2013

7 Facets on CreakyJoints and Battle for Grace

It's been a busy week. I've got two posts elsewhere, both related to Pain Awareness Month:

First, the great people at CreakyJoints graciously allowed me to share more about 7 Facets: A Meditation on Pain

"'So many live with pain, many more than you can imagine. A billion and a half of us all over the world are intimately entwined with pain and what comes with it … Looking in the dictionary, I see a definition of pain as a distressing sensation, as physical suffering. But is this so? Is this sensation just one thing, just distress, just suffering? Is it singular or, as with so many other aspects of our world, mutable and multiple, ever-changing? If we turn the prism, looking upon pain through each facet of the glittering crystal, what might we see?'

That is a quote from the beginning of my new book 7 Facets: A Meditation on Pain. It's a short e-book that dives into the depths of pain and looks at it from different perspectives.

I've lived with chronic pain since I developed juvenile arthritis in early childhood. Forty-five years of partnership (if you will) with anything or anyone will teach you about said partner’s nooks and crannies, will drive you crazy and sometimes make you smile. After forty-five years, you know this thing or this person better than anything else in your life.

And so it is with pain and me. We know each other well, have been companions for almost half a century. We've tested each other, questioned each other, negotiated, fought, coexisted and worked together. And despite all of this, it can still surprise me."

Hop on over to CreakyJoints to read the rest of the post.

Also pain related... I interviewed Cynthia Toussaint, a very interesting and inspiring woman for HealthCentral. We talked about her new book, her life and the nonprofit she started for women in pain:

"In Battle for Grace: A Memoir of Pain, Redemption and Impossible Love, Cynthia Toussaint writes about her life with Complex Regional Pain Syndrome (CRPS), fight for a diagnosis and proper care and her journey to becoming an advocate for herself and other women living with pain. CRPS is a disorder that can be caused by injury and causes intense nerve pain. In her early 20s, Cynthia was a ballerina, but a hamstring injury developed into CRPS and she spent the next 13 years trying to get treatment. This book is a searing indictment of the HMO system, and Kaiser Permanente in particular, for the limited access it offers to doctors, Kaiser’s denial of care and the health care for profit model. Most of all, Battle for Grace is the story of Cynthia, her partner John Garrett and their journey through the hell of relentless pain, depression and dysfunction to a place of peace, optimism and love. The author’s chapters alternate with John writing about the experience from his point of view and the two together present a 360° perspective on the challenges one partner’s chronic pain present to a relationship. Cynthia's description of her journey of being lost in illness to many different forms of advocacy is an inspiration."

You can read the rest of the interview here.
  


 

Tuesday, September 24, 2013

Take 2: Winner of Chronic Resilience

Remember the giveaway of Danea Horn's new book Chronic Resilience: 10 Sanity-Saving Strategies for Women Coping with the Stress of Illness? We hit a wee snag– the winner whowas announced last month never contacted me to get her book. So this is presented me with a unique opportunity to give away the same book twice!

I used the same source for picking the winner and asked The Boy's boy to pick another number between 1 and 18 (but not 9, the previous winner) and he picked number 6.

(please insert drumroll)

Congratulations, Annette! You are the winner of Danea's book! Please e-mail me at landers5ATgmailDOTcom with your address and I'll make sure the book gets to you.l

This tickles me to no end, as Annette and I live in the same city and have even had lunch!


Monday, September 23, 2013

Arthritis and Employment: Fit for Work



September is Arthritis Awareness Month in Canada. As part of this, I'm doing a series of posts about initiatives by different organizations. The common theme of these will be dealing with the topic of working when you live with arthritis. 

Living with arthritis — whether osteo or inflammatory — can be an all-consuming situation. Everything you do is marked by your disease and sometimes, it can give you a bit of blinders. You spend so much time focusing on making your life work that it can be hard to think in broad strokes. Here are some of those larger facts:

Over 4.6 million Canadians live with arthritis.
The annual economic cost of arthritis in Canada is $33 billion.
In a recent study, fully one third of respondents indicated they stop working because of arthritis.

Makes it very real, doesn't it? The study I mentioned above was commissioned by The Arthritis Society and further analyzed by the Arthritis Community Research and Evaluation Unit (ACREU), which found the following:
  • Two thirds of participants reported going to work even when they felt unwell because of their arthritis
  • 41% reported difficultly managing their symptoms.
  • 41% said arthritis made it difficult to carry out their work responsibilities
  • Over one third of participants reported that arthritis made it difficult to travel to and from work
  • Over one third noted that their condition had affected their career development.[1]
Make you feel less alone, doesn't it? And it also makes you realize the magnitude of the impact arthritis have on the lives of those who live with it.

Solving these pervasive and costly — both financially, societally and individually — problems requires several different tactics. One is to teach people more about self-management in the context of employment, such as the program currently being studied by The Arthritis Research Centre of Canada, which I wrote about a couple of weeks ago. Helping people to be more empowered and better managers of their disease is a crucial element in decreasing the impact of arthritis, unemployment.

However, you can teach people as much as you want about managing their disease, and being proactive and empowered at work, but if employers aren't aware of the loss of potential and good employees, what can be done to prevent it or don't have the willingness to do what's required, you're not going to get anywhere.

Enter an exciting initiative by The Arthritis Society. After commissioning the study mentioned earlier in this post that demonstrated the impact of arthritis on work from an individual point of view, they took the next logical and necessary step: they did something about it.

The first part of doing something was a booklet called ROI One Life: Arthritis. This article discusses the economic impact of arthritis in the workplace, making the cost of this disease is very real to employers. It goes even further by discussing the how critically important it is for Canadian organizations to take action and address the disease. This will appear in the latest issue of Benefits Canada and Avantages, covering both official languages.

And then The Arthritis Society did something else that's really interesting. On October 8, they are hosting an employer roundtable discussion about arthritis in the workplace "with the objective of moving from awareness of the disease to the development of a framework of guidelines and recommendations for arthritis friendly organisations."[2] 

This is an incredibly welcome development. Starting the dialogue with employers is essential and the fact that they're going to actually look at developing guidelines and recommendations? So cool it makes me shiver. This has the potential for creating real and lasting change and I can't wait to see what happens! 

You can read the ACREU study analysis and The ROI of One Life: Arthritis article by following the links in The Arthritis Society press release.  

There's one week left to help me raise $500 for Show Us Your Hands! Please consider buying a copy of the e-book or paperback edition of Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain by September 30, 2013. During this period, 50% of the royalties will be donated to Show Us YourHands!




[1] The Arthritis Society, "high impact of arthritis in the workplace draws focus during arthritis awareness month." Toronto, September 3, 2013 
[2] Ibid

Tuesday, September 17, 2013

7 Facets: A Meditation on Pain



Pain is a funny thing. Not just to live with (in which case it's not always very funny), but in terms of the myths and the silence surrounding it. Talking about pain is uncomfortable, especially for those who don't have it. Pain is hard to understand. You can't measure it, it's difficult to describe and it's near impossible to make others comprehend what it feels like to be in pain if they've never experienced it themselves. There’s a gap — you may even say, a chasm — between those of us who have chronic pain and those who don't. We need to start talking about pain with each other, to bridge that gap and create a better understanding.

To that end, meet my new baby


7 Facets: A Meditation on Pain is just that — a meditative exploration of the concept of pain, what it is like to live with it, its qualities, roles, and impact. It's been in the works for a while, something I've noodled with whenever I needed a break from writing nonfiction. Written as a poem in prose, it dives into the depths of pain and takes a look at it from the inside, the outside and at several points in between.

I hope this short e-book will spark conversations about pain, not just in the chronic pain community, but also among people who wish to better understand what pain is.

It wouldn't have been impossible to finish this one in time for September's Pain Awareness Month or for it to look as good as it does without my team (I love that I have a team). Laurie Kingston was the best writing buddy and beta reader anyone could ask for. Dan Handler yet again designed a cover that I fell in love with at first sight. Holly Sawchuk edited and made it feel joyful. And The Boy discussed, formatted, held my hand and showed me what true love and partnership is all about.

7 Facets: A Meditation on Pain is $0.99. It is available as an e-book short on Amazon US, Amazon CA, Amazon UK and Kobo. If you don’t have a Kindle, you can download the Kindle app for computer, tablet and smartphone for free on Amazon. The book will also be available for iBooks and Nooks soon.
   

Monday, September 16, 2013

Will you help me raise $500?



I often look at my copy of Our Hands Can! and every time, it makes me smile and feel stronger. Every time I see the Show Us Your Hands! community poster in my rheumatologist's office, it makes me smile and feel part of a community.

I want more people to have a chance to feel that way.

About a month ago, I told you that our big project at Show Us Your Hands! this year is to find a way to mass produce our wonderful photo book Our Hands Can! and posters so they can be more affordable than print on demand allows. And that means raising funds, so we can make a big order of both the book and the posters. Each of the Directors of Show Us Your Hands! is doing fundraisers with what they've got and what I’ve got is a book.


Until September 30, 2013, 50% of royalties from every single copy of Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain will go to Show Us Your Hands!. That means selling about 250 books if I want to raise $500. Shouldn't be a problem to do that in 14 days, should it now?

When you dream, dream big!

If you don't have a copy already, please buy one. If you have an e-book copy, please consider buying the paperback and vice versa. You can have your own backup copy or you can use it as a tool to raise awareness about the disease and give it someone else. Who? How about…

Most primary care physicians know next to nothing about RA. Buy a copy for your GP, your nurse practitioner or your nurse to help them know more.

Do what Sari did and buy one for your rheumatologist to help them understand what it's like to live with RA.

Give a copy to your spouse, your parents, your kids (if they're older — might be a bit intense for young ‘uns). If your family understands what you're going through, you have a better, stronger team.

Buy a copy for your friends, your extended family, your boss, your neighbour.

Get a book for that person in your life who always tells you that their knee aches when it rains or that you don't look sick or who looks askance at you when you take the elevator instead of the stairs.

Don't have RA or another kind of inflammatory arthritis? We still need you on our team! The more people who understand what RA is, the more awareness there is about the disease. So buy a copy, please?

Anything you can do to help will be much appreciated. All money raised will be used for Show Us Your Hands! Community Programs.

Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain e-book edition is available at all Amazon sites, Nook, Kobo and iBooks. If you don’t have a Kindle, you can download the free Kindle app from Amazon. The paperback is available on Amazonand CreateSpace.
  

Friday, September 13, 2013

September Sunset

After I got Regan a new left motor last week, The Boy and I took her out for a run to make sure there wasn't going to be any more shenanigans (like abruptly stopping in the middle of the street. Again). It was a beautiful late summer day with not a cloud in the sky and as it headed toward sunset, we went down to Sugar Beach.

We got there just in time to see the ducks starting to tuck themselves in for the night.



A bit further down by the water's edge, I looked across towards the gap between the shore and the islands and wondering if it were the flame of the sun that had stripped bare these trees. (more likely this)



Everyone were headed home after a beautiful day







When the wake of the boat hit the dock, it created a beautiful counterwave going back out again



This little one was late getting home to go to bed


 

and these little ones made me understand how brilliantly nature camouflages. At dusk, they are almost invisible in the sand



As the sun sank lower, a ship passed a big boat


 

It was time to go home. On the way, evening  gave way to a night of the bluest blue



   

Wednesday, September 11, 2013

The Benefits of Space



I took August off from my job as Community Leader for HealthCentral.com's RA site and a few other things. This cut my workload in half and I discovered something revolutionary.

I work too hard.

Now, before you experience ocular whiplash from rolling your eyes too hard — because this factoid has been in the obvious to everyone who knows me for some time — let me explain.

You start doing something, then you add a little something else, a few hours more over here and gradually, it becomes a very large hill of stuff. But you don't notice, because the increase has been incremental, every task sneaking in quietly and entirely doable. And because it has moved slowly, you don't notice how bad it was until you stop. It’s like the story that claims if you put a live frog in water and very gradually heat it up, the frog won't jump out because it won't notice that the water’s starting to boil.

I was that frog.

Taking a month off from being in hot water brought home how close to boiling my life had become. I found out that I like not being exhausted all the time. I talked to my friends and family in depth and realized how very much I'd missed them. And I discovered that the really high pain levels I’d been living with for months was the combination of an RA and fibro flare caused by stress. Thirty-three days of having the mental and physical space to do what I needed left me relaxed, happy, awake and no longer needing a higher than normal dose of Humira and painkillers to manage my RA.



We hear that inflammatory arthritis is affected by stress, but how many of us accommodate that part of the disease? Between work and community involvement, taking care of loved ones and staying on top of the chores of daily life, how much time do you have to take care of yourself in a day? And how much of that is spent on medical appointments and other aspects of managing your chronic illness?

No wonder we hurt so much.

Living well with a chronic illness requires you to listen closely to your body's messages so you know when to stop. Living well means paying attention to your physical and emotional needs, which help to prevent flares. But in our busy lives, how many of us make time for that? As we zoom through the tasks of the day, we move so quickly that we can't hear what is most important. We ignore the one thing that, if we pay attention to it and accommodate it, will help us do everything else.

As I reflected on my month off, I was reminded of a line from Mindfulness for Beginners by Jon Kabat-Zinn: "life is made up of moments. The faster you move, the more you miss." This is something that is essential for everyone – we can all benefit from slowing down and living more in the present. But it is especially relevant when you live with a chronic illness. Slowing down and paying attention in the moment, as you do in mindfulness practice, allows you to tune into the messages from your body, your mind and your soul. Slowing down gives you the space to check if the water’s getting too hot.

By the time you read this, I’ll be back to my regular schedule and my challenge will be to practice what I've learned in August. Feel free to hold me to it.

Ribbit.


   

Monday, September 09, 2013

Arthritis and Employment: Making It Work



September is Arthritis Awareness Month in Canada. As part of this, I'm doing a series of posts about initiatives by different organizations. The common theme of these will be dealing with the topic of working when you live with arthritis. 

The Arthritis Research Center of Canada is a very cool nonprofit organization. For one, they’re the creators of the banner, marking and Arthritis Awareness Month in Canada. They're asking that you use this banner on your Facebook page, blog or anywhere else to help raise awareness throughout September. 


Last week, I talked to Pam Rogers, Research Coordinator with the ARC, about an exciting new study called Making It Work.

But first, a bit of background… Created in the year 2000, the ARC’s mission is to perform research on all aspects of arthritis. The research is consumer-driven, focusing on quality of life issues, care outcomes and more. The ARC has a Consumer Advisory Board of individuals who all live with different forms of arthritis. All research projects are checked by the CAB to ensure relevance to the lives of people with arthritis.

One of the researchers who works with the ARC is Diane Lacaille (she's also practicing rheumatologist). Her areas of interest include work disability, gaps in care, and aboriginal people and arthritis. She's done a lot of work in the area of arthritis and employment. In her 2005 article Arthritisand Employment Research: Where Are We? Where Do We Need to Go?, She quoted numbers that show just how pervasive and important this problem is. 

"Arthritis and musculoskeletal conditions are the leading cause of longterm work disability in Canada and the US, with an estimated yearly cost of $13.7 billion in Canada. In rheumatoid arthritis, reported rates of work disability are remarkably high, ranging from 32% to 50% 10 years after RA onset, and increasing to 50% to 90% after 30 years. Studies have shown that work disability starts early in the course of RA, emphasizing the need for early interventio.”[1] 

(Note: I asked Pam whether these statistics regarding work disability had changed since the introduction of Biologics. There doesn't seem to be a lot of research on that as of yet. However, based purely on my observation in the last several years, I would guess that the numbers are changing. (Correction: I goofed in the information in one of the articles I read that discuss the impact of Biologics on the ability to work, which is positive. However, given that Biologics do not help a significant number of people achieved remission, work disability remains a problem)

What's interesting — or alarming, depending on your point of view — is that there hasn't been a lot of research into interventions and programs that can prevent work loss or improving people's ability to work. If you follow Dr. Lacaille’s work since the article mentioned above, you can see that she's been working on changing that. In a 2007 qualitative study, focus groups discussed issues related to four categories: arthritis symptoms, working conditions, interpersonal difficulties at work, and emotional challenges. The study also identified "fatigue is the aspect of IA [inflammatory arthritis] most limiting employment,"[2] as well as a number of other barriers to using supports, accommodation, etc. 

Enter Making It Work. This is a study investigating an eLearning program designed to help people with inflammatory arthritis stay employed. It uses a controlled, randomized trial with half of the participants using the eLearning self-management program and half not. Recruitment will take place in several provinces during 2013 and in Ontario in early 2014 (I'll be sure to share information when that happens). This is a completely unique program, utilizing a combination of e-learning modules with group sessions and in-person consultations with employment-related professionals. Preliminary results will be available in 2014.

Sounds like something every person with IA could benefit from, doesn't it? Here comes the best part. Pam told me that when the study is done, Making It Work will be available on the ARC website to everyone. Not just in Canada, but to anyone who has access to a computer and a modem. And just as importantly, "it will always be free." (Correction: after further discussion, an amendment to this. As there is a cost associated with running the program, participating in it will likely have a fee. However, as the ARC is a nonprofit organization, fees will reflect this)

Stay tuned. I'll be sure to keep you posted.

If you live in British Columbia, Alberta or Ontario and want to get more information or be part of the study, email MakingItWorkATarthritisresearchDOTca.

I have exciting plans for later in the month of September, including a new release. To be the first to know what happens, sign up for the newsletter here (scroll to bottom of  the page)



[1] Lacaille, Diane et.al., "Arthritis and Employment Research: Where Are We? Where Do We Need to Go?" (J Rheumatol 2005;32 Suppl 72: 42-45)


[2] Lacaille, Diane, et.al. , "Problems Faced at Work Due to Inflammatory Arthritis: New Insights Gained from Understanding, Patient’s Perspectives." Arthritis & Rheumatism (Arthritis Care & Research) Vol. 57, No. 7, October 15, 2007, pp 1269–1279

Thursday, September 05, 2013

New Shop, New Products

Some time ago, I played around with Zazzle for some custom-made products and liked it a lot. The interface is wonderfully easy, making interesting products a snap. I spent part of my vacation time in August making some new stuff.

Looking for inspiration? In addition to the Still Standing poster still in the shop, I've made a couple of postcards for you or someone you care about


Hope Postcard
Hope Postcard by TheSeatedView
Find more Hope Postcards at Zazzle



I also put the Your Life with Rheumatoid Arthritis logo on a few things. First, a mug. Because there's nothing is comforting as a mug of something warm.


Your Life with RA Mug
Your Life with RA Mug by TheSeatedView
Find other Your life with rheumatoid arthritis Mugs at zazzle.com

The great thing about Zazzle is that they allow you to make products customizable by your customers. I clicked a certain button and that means you don't have to stick with the basic white mug, but can choose from a variety of styles of mugs, including a travel mug and a beer stein (?).

In my book, I talk a lot about using a symptom diary to help you identify patterns. This means you need a notebook and I really like the simplicity of this



They have some beautiful bags and when I looked at them, I thought of how RA hands often have trouble with carrying regular bags, heavy purses and the like. So I made some messenger bags , which would be easier on your body. This is a small one, and you can choose from a number of colors for the inside of the bag, as well as the binding


Your Life with RA Small Messenger Bag
Your Life with RA Small Messenger Bag by TheSeatedView
Look at more Rheumatoid arthritis Messenger Bags at zazzle

If you prefer a tote bag, either for your own groceries (or sending someone else out for your groceries), check this out. It's also customizable in seven different types of bags.


Your Life with RA Tote bag
Your Life with RA Tote bag by TheSeatedView
Shop for other tote bags online at zazzle.com

In addition to Your Life with RA products, I also put some recent favourite photos on 5x7 greeting cards, that you can make it into a note card if you prefer a smaller size.

The urban wildlife selection




Bird in Balance Greeting Card
Bird in Balance Greeting Card by TheSeatedView
Check out Birds Cards online at zazzle

And the urban flora selection





Visit The Seated View Zazzle shop to check the products out in more detail.
  

NB: Cris Peacock - you are the winner in the Chronic Resilience giveaway from early August. Please contact me at landers5ATgmailDOTcom by next Monday, September 9 with your address. If I don't hear from you, we'll have to pick another winner.


I have exciting plans for later in the month of September, including a new release. To be the first to know what happens, sign up for the newsletter here (scroll to bottom of  the page)

Tuesday, September 03, 2013

A Visit from Good Friends

August got off to an excellent start with a visit from my sister-friend AB and her family. AB and I have known each other since Grade 1, so they arrived just in time for she and I to celebrate our 44th anniversary. We have big plans for six years from now…

We spent a wonderful four days hanging out, noodling around the neighbourhood and eating good food. in other words, the perfect visit. As is my wont, I did all of that with my camera in hand. When it comes to photography, I follow the adage that you take a lot of shots to get a few good ones. During this visit, I was surrounded by extremely photogenic people, so I got a lot of good ones. Herewith a small sampling.

AB at Sugar Beach



Introducing...


Bjarke, AB's husband

 


Camilla, their oldest, now attending university in Scotland

 


Christoffer aka Chris, recently home for a year as an exchange student in Utah

 


Janne/TinkMama came in with the kids

 


Remember five years ago? Here's the "arms full of Tinks," 2013 version

 


The Tinks loved having Camilla and Chris to play with. Camilla took them racing up and down the stairs in my mother's building (don't have a shot of that, though) and Liam thoroughly enjoyed creating his own little Boys' Club


Both the kids to go over Chris and Camilla's iPods



I'd like to enter this in the Not Related At All category,




Liam was fond of Muffin's toys



This photo was right after he (unwittingly) told his first slightly off-colour joke. And then didn't understand what was so funny




AB and I hung out in St. James Park and I got her to model her spectacular hair


Bjarke's quite nice, too




And then they went home again. This photo makes me verklempt because four people whom I love very much were leaving. On the other hand, it also warms my heart - because they're all walking in step.



  
NB: Cris Peacock - you are the winner in the Chronic Resilience giveaway from early August. Please contact me at landers5ATgmailDOTcom by next Monday, September 9 with your address. If I don't hear from you, we'll have to pick another winner.

I have exciting plans for later in the month of September, including a new release. To be the first to know what happens, sign up for the newsletter here (scroll to bottom of page)