Showing posts from January, 2013

Rheumatoid Awareness Day: An Interview with Kelly Young

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 .

Concrete Support

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

Ratings System

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

In Which Normal Becomes a Mental Illness

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

People with Chronic Illnesses Could Be Labeled as Mentally Ill

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

Night Shots

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

Writing with a Chronic Illness: Chronic Pain and Writing Practice

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

Perfect Birthday Wishes

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

Real RA: Talking with Your Hands.

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


Sometimes, change happens so gradually that you’re not aware of it until after it’s well underway. And sometimes, you can pinpoint the exact moment your life changed, naeeowing the point down so precisely that the watershed between Before and After is a matter of minutes. On January 7, 2005 at 3:35 PM, I got my first shot of Enbrel. I went home to have a nap and when I woke up at 6 PM, I was a different person. I could feel the drug working . It took weeks, months and years to get stronger – the amazing thing is that today, 8 years later, I am still getting stronger – but that’s the moment. January 7, 2005 at 3:35 PM is my watershed. I often refer to it as The Miracle, capital letters and all, because that's what it was to me. I write about it often, because I think of it often. I believe that when you are the recipient of something so profound as the gift of life, it should be honoured. And I talk about it, too, because I am proof of the reason to hope that even the mos

Snow Snow Snow

There was supposed to be a post with words today. Y'know... thinking. But I've been crashing for 10 days, winter's giving me some "interesting" pain levels and I don't have the energy. So instead, more photos. Canadian winter has come back and is making up for lost time. In the past week, we've had three significant snowfalls (i.e., enough that I'm housebound). It's wearing a bit thing, but I'm enjoying the opportunity to get out there and play with my new camera. It all started Boxing Day when we got 10cm, making for a very pretty evening The next morning, everything was covered It took a few days before I could go further than the sidewalk in front of my building   Yesterday, snowfall #3 arrived, with big fluffy flakes making my little street look more and more like Narnia Beautiful, cold and a bit of a pain in the arse. Ahh, winter... It's what makes us appreciate summer so much.   

Blushing Furiously

There are some truly astonishing people out there. Some of these astonishing people have nominated me not for one, but three categories in the WEGO Health Activist Awards :  I am completely overwhelmed and massively grateful. You can see all the nominees on the WEGO Pinterest page - I'm not listed yet, but they're working on catching up.  Thank you so much to the people who nominated me. This means a lot.