The Seated View

I'm happy to announce that my blog tour kicked off today! What's a blog tour, you ask? It's a book tour where you don't have to put on makeup or even leave your home! My lovely friend Cathy at The Life and Adventures of Cateepoo agreed to host the first stop on the tour and to hold my hand through the jitters. She asked some fantastic questions about RA meds, alternative treatments and sex. We also included a giveaway of two copies of the book. Hop on over to Cathy's blog to read the review and Q&A and enter in the giveaway,      

Hope. It's a very big part of Your Life with Rheumatoid Arthritis. It's something I mentioned specifically in many of the chapters in the first book, Tools for Managing Treatment, Side Effects and Pain . More than that, though, finding a way to connect to hope is the driving force behind the series. The dictionary defines hope as "the feeling that what is wanted can be had or that events will turn out for the best." Over my decades of living with RA, through good times and bad times — and really bad times — a belief has quietly and steadily grown within me. It is the belief that hope is central to living with this disease. When you spend every day with this cantankerous companion called RA, it can be difficult not to get pulled down into the darkness. Sometimes, it's pain that drags you down, other times it is being overwhelmed by medication and medical issues. During the good times, the spectre of a flare can hang over your head like the other sho...

This week on HealthCentral, I riff on how Ra can prompt your to seek renewal and reinventing yourself: "RA can be a gift. When I say that, people usually look at me as if I've grown another head. How can this chronic autoimmune disease that frequently and randomly takes over your life be a positive thing? Sure, it isn't always all rainbows and unicorns — sometimes it's like being perpetually rained on and speared by that unicorn's horn. But RA doesn't just take, it also gives. And one of its gifts is the opportunity to reinvent yourself. The moment you receive a diagnosis of RA, you are no longer the person you were. Now you go through life with a chronic illness that requires medication, coddling and juggling a host of challenges. Sometimes, these challenges sideline you for a while and sometimes, they mean changing your life completely. Living with RA forces you to reevaluate your life, both physically and emotionally and that can be a g...

In between this past weekend's madness of getting The Book ready to launch , we had a wonderful respite in the form of a Tink visit. There's nothing like two 7-year-olds to blow stress and lists out of your mind and just focus on the present. We went for lunch at a local pub.While waiting for the food, the kids mauled Janne Morgan and I shared some confidential information Photo by Janne/Tink/Mama Liam showed off a Blob Fish  While Janne and Morgan looked on Eventually, the kids' got tired of waiting for the food and started gnawing on each other After lunch, we went back to my mother's place and the kids mauled The Boy. Here Morgan's trying to hear if the wind from the small fan moves through David's head from one ear to the other Practising for the trapeze   And Liam investigates the fan in more detail   

Three years ago, I finally went public with a dream . In so doing, I trusted the meds enough, trusted fate, the universe and/or various divinities enough that I could start making a long-term plan. The dream was to have a book with my name on it. And today, I do . After a gestation period longer than an elephant’s, my baby is finally ready to see the day. To meet you. To meet the world and see what the world says. That part is a bit nerve-racking.  Well, to be honest, all of it is more than a bit nerve-racking. There’s a really big difference between sitting quietly at my desk dictating words into a document and then putting it all together and offering it up for sale on Amazon .  Nonetheless, that’s what I’ve done. It also has a beautiful new website .  Three years ago, the idea started out as a book about how to live well with rheumatoid arthritis. Because having RA is about so much more than a physical disease. As is the case wi...

  

A while back, Laurie suggested that I watch Pink Ribbons, Inc. and it's been on my list of movies to buy. It turns out that sometimes, when you lollygag long enough, really good things happen. Last week, she posted this news : The National Film Board of Canada is currently offering the movie as a free download . All you have to do is answer a short survey before the download and after watching the movie. So naturally, I signed up. And it is an amazing movie. One that will open your mind, make you think and quite likely change how you act. After watching it, I called to tell my mother about it, hoping to encourage her to watch it herself. I was so revved up that I went on at some length and subsequently, she may not have to watch it after all. A-hem. She asked me if I felt sick inside, because that's so often the reaction to documentaries, isn't it? I told her that I didn't, because Pink Ribbons, Inc. manages to do that rare thing of making you angry and at the ...

Last Monday, the stairwell next my apartment got painted. I have massive problems with paint fumes — it triggers my asthma in about two nanoseconds. I have an arrangement with my landlord that involves advance notice (so I can plan to be elsewhere), taping up the door to painted areas, etc., but through a farcical chain of events, the painting was a surprise to all. Compounding the issue is the fact that the fresh air exchange in the public hallways of my building is currently not working. Thanks to this, I learned something. Paint fumes make me stupid. Not like fibro or RA fuzzy brain. Paint-induced stupidity is far more profound, which was a surprise to me as I thought fibro/RA fog was about as uncooperative as my brain could get. I had no idea. I spent last week in some sort of strange fugue state, where I couldn't focus, my concentration was nonexistent, I was vaguely aphasic both in speech and writing, everything was blurry and it felt like my eyes were moving ind...

This month on HealthCentral, we're writing about relationships. My contribution is a post on the importance of touch and what you can do to meet your need for physical contact when you hurt (yes, that includes sex): "Touch. We know it's important to babies and children, but once we are grown, we pay less attention to it. Nonetheless, it's still important to our daily lives and mental health. The skin is our largest sense organ and touch has evolved as a medium of communication for humans. Your skin tells you if it's hot or cold, humid or dry. Your skin is involved in greeting strangers with a handshake, interacting with your family and connecting to your spouse or partner. And then RA comes along and touching falls by the wayside. You hurt and are afraid that that physical intimacy — hugs, touch, sex — will hurt and the people who love you are afraid that their touch will make things worse for you. Before you know it, this essential way to nourish you...

The news matters. This is the central tenet that runs throughout Dan Rather's Rather Outspoken: My Life in the News . Woven through stories of 60 years working in the news, Rather has written a passionate argument for keeping the news independent and unbiased. And then he tells you why this is an important topic, but does so in such an interesting and entertaining way that you don't notice you're learning something crucial. The book starts with his version of the events that led to him leaving CBS news. Namely, the reporting about Abu Ghraib and his report about George W. Bush's time serving — or, more to the point, not serving — in the Air National Guard. These are the stories that put corporate interests right up against reporting the truth and the truth lost. Rather offers up his side of the story and even if you subtract some of it to account for personal bias, it's a doozy. If you assume that just half of it is true — allowing for an exaggerated am...

This week on HealthCentral, I wrote about a new initiative for raising awarneess about RA: "May’s Arthritis Awareness Month covers more than 100 different types of arthritis . October 12 is World Arthritis Day . May 10 is World Lupus Day. May 12 is Fibromyalgia Awareness Day. The first Saturday after May 1 is World Ankylosing Spondylitis Day. There has been no day for rheumatoid arthritis. Until now.  You can read the rest of the post here .

Sometimes we need emotional support, sometimes something a bit more concrete...   

Yesterday, I read Trisha Torrey’s post about the ratingsystem . More specifically, how someone named Dr. Young has protested about his patients rating (judging) his services, calling some of them unfair. He also felt that people who didn't "get over it" are "bad patients." Trisha asks that since patients rate doctors, should doctors rate patients, too? I left a comment on her post, but feel the need to rant in more detail. First, doctors judge patients all the time. None of them – even the best ones — are unbiased paragons of service to humanity. Every time they reassure you that your symptoms are caused by stress, it's a judgment. Every time they refuse to give you a prescription for painkillers because they feel you don't need it, it's a judgment. Every time they dismiss your anxiety as catastrophizing," it's a judgment. The judgments are big or small, innocuous or have the potential to cause damage, but they're there. Because...

The upcoming fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-V) lists the new disorder called Somatic Symptom Disorder. To quote my HealthCentral post from yesterday , "you can be diagnosed with SSD if for at least six months, you have had a symptom or symptoms that is distressing and/or disrupt your daily life and you have one of the following reactions Disproportionate thoughts about the seriousness of your symptom(s); A high level of anxiety about your symptoms or health; or Devote excessive time and energy to your symptoms or health concerns." When I first read this definition, my jaw hit the floor for several minutes. Then I sputtered incoherently for several more. It could be argued that I am still sputtering. There is a significant amount of concerns about this new disorder within the community of people living with chronic illnesses, as well as medical professionals and therapists (see more detail here). Today i...

You may have seen articles about this issue around the Internet recently. The American Psychiatric Association is releasing a new edition of the DSM-V, used for diagnosing mental illness. A new disorder has been added called Somatic Symptom Disorder and it has some worrisome implications for people living with chronic illness. You can read more about this issue and what you can do to help in my post for HealthCentral: "Did it take a long time for you to get diagnosed with rheumatoid arthritis or another chronic illness? Did your symptoms disrupt your daily life? Did you worry about your symptoms? Is your condition under control or does it disrupt your daily life? If so, do you worry about it? According to the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-V) to be published in May, this could cause you to be diagnosed with a mental disorder. The DSM-V is published by the American Psychiatric Association (APA) and is used to catego...

As I may have mentioned once or twice (okay, 35 times), I got a new camera for Christmas. I love my old camera - it performs wonderfully in natural light and has a kick-ass zoom. I've always been frustrated by its performance in low light, though. Also? It's amazing what happened in the camera world in the past four years. I love The Board Boy for advanced a vast - Dragon was less than cooperative when I wrote this - number of reasons and one of them is that he enables and indulges my tech lust. Such as giving me a new camera. My new baby is a Sony Cyber-shot DSC-HX10V . Over the holidays we wandered out to test how it did in the dark. All of the shots in this post are SOOC (Straight Out Of Camera) with no editing. The Market's all lit up for the holidays. This makes the Flatiron Building look like the mothership has landed It was cold, a few days after we'd been repeatedly dumped on by the weather gods Not too far down the road there's a ...

After my big flare eight years ago, I decided it was time to do something about that lifelong dream of being a writer. To stop being practical and having a day job and throw it all into getting off the pot, so to speak. Never mind that I hadn't had a day job for quite a while at the time. The point was that I had gotten a second chance at life and when that happens, you stop procrastinating and get serious about honouring it. So. There I was, set on being a writer and wondering how to do it. Naturally, that meant research. I read books about writing and over time, I noticed that everyone talked about two things as being essential to the craft. The first was journaling or freewriting . In her excellent book Writing Down the Bones , Natalie Goldberg recommends that you start each day "writing your pages." This involves sitting down with a notebook and a pen and writing without stopping for a set amount of time, such as half an hour. This helps develop your w...

Today is this handsome man's birthday This quote by modern philosopher Slavoj Žižek in the movie Examined Life  resonates with both of us "Love is not idealization. A true Lover knows that if you really love a woman or a man, that you do not idealize him or her. Loves means that you accept a person, with all its failures, stupidities, ugly points and nonetheless the person is absolute for you, everything that makes life worth living, that you see perfection in imperfection itself. And that is how we should learn to love the world.” There is no such thing as the perfect man or woman. There is, however, a person who is perfect for you. And I'm very lucky to have found the man who's perfect for me (and who luckily thinks I'm perfect for him, too, or things might have gotten uncomfortably stalk-y). He normally prefers to be a bit stealth, but I believe you should be the recipient of much fuss on your Once A Year Day. What better way to ensure fuss than...

There is a legend in my father's family. A long, long time ago, a Spanish mercenary supposedly had his way with a female ancestor. Equally supposedly, this explains why families with two children always have one with dark hair and one with blonde hair. Writing it down like that makes it look completely nonsensical, but it's a good story and I've never been one to let the facts get in the way of a good story. In my immediate family, we also used this legend to explain why my dad talked with his hands much more than is the norm in Denmark. Naturally, since my sister and I grew up in a household where gestures supplemented speech — combined with whatever diluted drops of Spanish mercenary blood still runs in our veins — we also talk with our hands a lot. When RA has its way with you, damage in the joints can lead to deformity. I never liked the word deformity — it sounds so Quasimodo-like. Gnarled isn't much better, so let's skip right over attempts to find the...