The Seated View

   Followed a bumblebee around the other day. It was lost in gathering and I was lost in watching it           

    (Sorry if that title gave you an earworm of this song ) I've been thinking some more. This time on vacation has had me connecting the dots from my own moments of high anxiety to the notion of catastrophizing and today, the subject is feelings. More specifically the dismissal of feelings that lies at the base of the concept of catastrophizing. Let's check this scenario: Patient: "this is the worst pain ever." Doctor: "you're catastrophizing. This is a sign of bad coping skills." Fabulous. There you are, in the midst of extreme pain and your doctor says you're exaggerating and not coping well. That'll shut you up in hurry, won't it? Let's try another scenario: Patient: "this is the worst pain ever." Doctor: "I'm so sorry to hear that. That must be really hard." See the difference? In scenario #2, the doctor listens, hears the message and uses empathy/sympathy. By doing so, t...

    Kelly over at RA Warrior came up with a meme about what defines us . Have you done it yet? Here are my answers: What is one thing that defines who you are, regardless of RA? My faith that change is possible. What’s one food you know they must have in heaven? Ris a la mande. Danish Christmas dessert. Name a song that takes you to a happy place? Ode to Joy . What’s your favorite city and why? Toronto. Multicultural, considerate, has everything you want, including nature in the middle of the city. Name 1 thing that you have learned by living with Rheumatoid disease? Resilience. What medication has helped you the most with RA symptoms? The least? Most: Biologics - my personal miracle. Least - everything else. What do you most wish health care professionals understood about RA? That it affects all of your life, not just your body. What is something about you that would probably surprise most people? That I'm a sap. What i...

    This weekend, we went to see the Ultimate Dinosaurs: Giants from Gondwana exhibition at the Royal Ontario Museum. Basic story: big dinosaurs from the southern hemisphere. Really big. We did a herd excursion - somewhat fitting, what with the herds of extinct creatures - piling friends and kids into one group and got set loose at the ROM. And much fun was had. The biggest dinosaur is in the lobby because there isn't room for 110 feet of bones in the special exhibit hall. It was big To get a better sense of just how big, let's use a six-year-old girl for scale Liam was very excited Cleverly, there was a movie of what Gondwana might have looked like as we waited to get in And it was pretty great once you got there. The skeletons were arranged in a wonderfully lifelike way - this little guy was being chased, about to be dinner. Amazing sense of motion This one was on its way somewhere. Thankfully, it paused until I could ge...

    I've been thinking. And what with being on vacation, there's actually been mental room to move some ideas around, played connect the dots and whatnot. Settle in, this is a long one… More specifically, I’ve been thinking about catastrophizing. This is a concept discussed in the field of rheumatology. The concept states that people who have RA pain tend to exaggerate reports and worries about pain and its impact, leading to poor coping styles and depression. One article says “disease severity (as measured by 'objective' indices such as those that employ radiography or serology) is only marginally related to patients' reports of pain severity.” Many others investigate catastrophizing in various contexts, emphasizing its relationship to depression, hopelessness, anxiety, passivity in coping with pain and on and on. In her discussion of catastrophizing, Kelly includes a couple of examples of what this may be. For instance, "this is the worst pain i...

    I live in old town Toronto, the part of the city that holds the first city hall, just down the street from the first parliament site. And there's been a vbunch of celebrations and events related to the bicentennial of the War of 1812. That's the one where we kicked the Americans' butt and burned down the White House. Sorry 'bout that! Yesterday, there was an honour procession of First Nation Chiefs, Elders, veteran and youth to - as it says on the poster - "commemmorate the contribution of more than 10,000 First Nations who fought as British Allies in the War of 1812." Or as our City Councillor Pam McConnell said, "protect us against American invasion." Aka, they saved our collective bacon a bunch of times. And this is one of the reasons I love living downtown, because the procession started right here in my neck of the woods. So naturally, I went to check it out.   Because nothing says respect for historical contribution ...

    This is why I'm five days into a very necessary two weeks off. Actually, it was worse than that. It was the eyes going *boing* the minute I turned off the light, but no actual ideas coming, because my brain was moving so fast with everything I had done that day and needed to do the next that there wasn't room for ideas to hop on the ride. On Monday, I reached the point where the thought of working made me tear up. After battling it for several hours, I finally faced facts and e-mailed my lovely Producer at HealthCentral telling her that I’d be gone until the 23rd. Tuesday, I was still in the crying mood, overwhelmed by a feeling of depression deeper than I’ve had in ages. Could not yank myself out of it and didn’t quite understand why it was there. Sure, I was tired and sure, I’ve worked too hard for too long without a break, but this despondent? Whyever for? The Boy came by that evening and helped me do a bit of an audit of how I spend my time and t...

  

Scene 1: I'll be going to a meeting where it's a good idea to look reasonably professional. I'm wearing my fancy new camisole under a sweater, looking as if I’ve actually planned what to wear (I work from home – looking put together is rare). I say goodbye to my attendant and start my breakfast routine. After about 5 minutes, I notice that the right shoulder strap is putting pressure on the edge of my shoulder blade. I fidget in my wheelchair, trying to find a slightly different position, but there's no real alternative to back resting against backrest. After 10 minutes my right shoulder is screaming in pain. Scene 2: I just said goodbye to my attendant after a trip to the washroom and go back to my computer. It takes a little while to realize that something is wrong, but when I do, I dread what's coming. The left leg opening of my underpants is positioned slightly wonkily so the bone in my arse is resting right on the edge of the material. Within 10 minutes ...

     

    Some time ago, I saw an image on Facebook about RA. Thanks to my fibro fog, I no longer remember who shared it in which group, but even if I did, I wouldn't disclose it. Because I am about to vehemently disagree and there's no need to get flame-y. This is the image And I have issues. So, because I have RA, apparently I have only two options about how I feel on any given day. I can feel either mildly weepy or lie prostrate on the divan drowning in my own tears. It seems that having RA eliminates the possibility of any form of happiness or even just feeling meh . Instead, the diagnosis dooms us to a life of suffering, depression and forever leaking salt water out of our eyes. Huh. No one ever told me this. Is it a new requirement? Getting diagnosed with a chronic illness is hard. There's no getting around the fact that there's going to be crying. It is a normal part of grieving the loss of health, the state of innocence in which most peo...

     

    This week on HealthCentral, I'm looking at good news about Biologics and the systemic impact of RA: "It’s called the mortality gap. And none of us like to think about it. The average life expectancy of people with RA is 10 years less than the general population. RA is a systemic disease that affects not just our joints, but also our internal organs. The mortality gap exists because the systemic inflammation of RA leads to a higher incidence of heart attack and stroke. But there's good news. A few weeks ago at the 2012 meeting of the European League Against Rheumatism (EULAR) in Berlin, researchers presented a paper showing a dramatic reduction in heart attacks in people taking anti-TNF medication , such as Enbrel, Humira and Remicade." The rest of the post is here .    

      (someone please tell me what kind of flowers these are - lupins?)

Sometimes, there’s nothing for it. Sometimes, you try and try and try and then you try some more, but you can’t get past where you are. Sometimes, the struggle takes on a life of its own, colouring everything else around you, making it impossible to have a moment that is free and pure of worry. Sometimes, it turns you into an modern-day Sisyphus, pushing the rock up the hill over and over, only to have it roll down again. Sometimes, you get so lost in the fight that you lose perspective, instead blindly moving through a morass of futility. Sometimes, you have to surrender to reality. Six months ago, I was one of the spokespeople for The Health Council of Canada’s report about people who live with chronic illness and their challenges within the healthcare system. My story focused on the cost of chronic illness – the money. Because having a chronic illness is expensive. Add a disability on top of that and it becomes major money. We don't talk about the money. It...

    Remember the Amazing Awareness Contest held on HealthCentral's RA site during the month of May? Today I announce the winners. But not just that - I also collect all the great suggestions 7ut were submitted for raising awareness in one place. Your go-to list for ideas on how to change the world: "You are all brilliant! We asked you to enter your ideas about raising awareness of RA for our Amazing Awareness Contest in May. And we were overwhelmed by your creativity and passion. Thanks to you, our community will now have a blueprint for change to consult when looking for suggestions of what they can do to change the way others see our disease. More on those suggestions in a moment. First, I need to announce the winners of the contest." You can see the winners and the ideas here .    

    

    I don’t like zombies. In terms of the traditional trifecta of transformative supernaturals, give me vampires or werewolves any day for an interesting story with plenty of potential for goosebumps. Zombies, on the other hand, aren't particularly scary. Primarily just gross. I mean, how truly frightening can it be to have somebody shambling after you, moaning quietly while leaving a trail of extraneous linbs? Creepy, yes. Hide-behind-your-pillows kind of scary? Not really. The only zombie movies I've ever watched and enjoyed are Shaun of the Dead  and 28 Days Later . I tried watching The Walking Dead , that critically and popularly acclaimed series, but after two episodes decided that I had too many other options for entertainment that I might actually enjoy. Which is to say that I don't exactly know how I ended up buying Feed , the first book in the Newsflesh Trilogy by Mira Grant , which is supposedly zombie novel, but nonetheless, there I was. Very sh...

     

    This week, I got super practical on HealthCentral: "For some, it's the jar that might as well have a padlock. For others, it's the childproof cap on a prescription bottle standing between them and relief of pain. Then there is the keyboard that makes your wrists hurt, scissors that cause the base joint in your thumb to be unusable and the list is endless. When you have rheumatoid arthritis, interacting with objects in your home, garden and office can be frustrating and painful. This post will feature products and places that can make your life easier." You can read the rest here .