The Seated View

One of the benefits of RA increasingly being an invisible illness is that you have a choice about whether you want your employer and colleagues to know about it. Sometimes, it's necessary, though. In my new post for HealthCentral, I take a look at the issues around disclosure: "You’ve just gotten a diagnosis of a chronic illness. You know you want to tell close family members and friends about it. But should you disclose at work? Let's look more closely at the issue of being open about chronic illness in the workplace. The legal side Human rights and anti-discrimination laws exist in the United States and in other countries, due to a long history of discrimination against people in the workplace because they're "different." Those differences can revolve around race, disability, gender, sexual orientation — the list goes on. In the U.S., the Americans with Disabilities Act (ADA) protects people with chronic illness and disability. I...

Alcatraz, 1992   At some point in the ICU , I had a transcendent experience. Buzzing with excitement, I waited for The Boy to arrive for his daily visit and then told him all about it. That as soon as I was better, the first major adventure we were going to have was to go to Giraffe Manor . Do you know about Giraffe Manor? If not, you simply must click that link. It’s a hotel in Kenya that’s has a herd of domesticated giraffes wandering about the grounds. Giraffes that stick their heads through the windows and steal your breakfast!    I’ve wanted to be a game warden in Africa ever since I read Born Free: A Lioness of Two Worlds as a little girl, but for now it’s fairly obvious that this job option is going to have to wait until my next life. The photo safari, too, because the savanna isn’t too accessible. But there it is, Giraffe Manor, and it is at the very least partially accessible! So, anyway. The reason that we were going there was because I’d d...

That's a bit of a weird combo, huh? It's been a busy months, so I thought I'd lump together my last two posts for HealthCentral. The first is about the emotional impact of having side effects from RA meds: "When our doctors talk about starting another drug for our rheumatoid arthritis (RA), one of the first things many of us do is research the side effects. Looking at that list can be unnerving, but ultimately when we take the meds, we may have to live with manageable side effects. We may discuss ways of minimizing the side effects with our doctors, but otherwise we find ways of moving on. But no one ever talks about the emotional aspect of having these side effects. We asked our Facebook community to share their thoughts about the emotional impact of side effects. Some of these stories will appear throughout this post." Read the rest of the post on coping with the emotional impact of side effects. This month on HealthCentral's RA site...

Sugar Beach is a working beach. It's right next to the Redpath sugar factory, where they transform raw sugar into the refined stuff. And if you get there at just the right time, you can see the freighters coming in, loaded with Caribbean sugar and ready to unload.

I'm honoured that members of the community nominated me in the 5th Annual WEGOHealth Health Activist Awards . Being nominated for any award is always special, but when it's your peeps who do so, it means that much more. I'm nominated in two categories: Health Activist Hero and, believe it or not, Lifetime Achievement. That last one tickles me to no end. Thanks so much to Annette for the nomination, in which she said: " Lene has written a book called Your Life With RA and is almost done her 2nd book. She is active on Twitter, Facebook and her blog, and is also lead writer at HealthCentral. Not bad for a woman in a wheelchair since her teens."   I'd love if you'd endorse me .

I love my job for very many reasons. One of them is that I get to interview a lot of interesting people. The latest is Michael Kuleva, the man behind the fashion label Tumbler and Tipsy. His new Spring/Summer 2017 collection is entitled Creaky and Tipsy and raises awareness about arthritis. You see, Michael has lived with RA for several years and he has chosen, but kept it private. Now he's making a public in the best possible way. "Michael Kuluva wants to change the world, one sweatshirt at a time. When Michael retired from professional figure skating to become a fashion designer, the 33-year-old never imagined combining his rheumatoid arthritis (RA) with his label Tumbler and Tipsy to raise awareness about the disease. Creaky and Tipsy, his Spring/Summer runway collection for New York Fashion Week, is presented by CreakyJoints , the arthritis advocacy organization, on September 13, 2016. The new collection uses playful designs to illustrate the impact of RA a...

Well, hello brainfog! It's sort of ironic that a post about being tired was published just of the time when I was pretty tired and subsequently pretty forgetful. Because I forgot to post it here! Anyway! Say hello to my post about chronic fatigue for Mango Health in August. A bit late: "Ah, fatigue. My old friend. Well, that’s not exactly true — I’d prefer to kick it to the curb, but it sticks around like a leech, draining me of vitality. If you have a chronic illness, you know what I mean.  Even if you don’t, you’ve probably still experienced low energy levels at one point or another. Think back to the last time you were sick with the flu, for instance, and how exhausting it was to walk a few steps to the bathroom. That’s the kind of tired those of us with chronic fatigue experience every day. I have rheumatoid arthritis (RA) and fibromyalgia, both known for coming with a healthy dollop of fatigue. You might say that I have a double whammy of exhaustion....

“Relax,” he said. “Hi!” I replied. “Have you met me? I am not a relaxed person.” I have lived with anxiety since I was a child. My first memory of being really anxious was the first day of Grade 1. I remember the red dress I was wearing. I remember being one of only two students who could read the sign with their name on it on one of the small desks. And I remember being on the verge of throwing up all morning. Because anxiety always hits my stomach. Part of the problem is that I have a vivid imagination and it occasionally veers towards catastrophizing. Another reason is having lived with an unpredictably capricious disease for fifty years. Never knowing how you’re going to feel tomorrow, or if you’re going into the hospital, or if the damned RA is about to do a clog dance on your joints makes for a great deal of uncertainty in life. And it could be argued that we all have a great deal of uncertainty in our lives, but my rebuttal is this: when you are a genera...

If you have been reading this blog for a while, you know is that I often rant about the hysteria of the war on opioids and how it often leaves people in pain untreated.There is some good news on the research front. Two new studies show promise for the development of opioids that have no addictive properties, and significantly less side effects, which would make them a safer way to treat high levels of pain. I wrote about the studies in my new HealthCentral post : "The concerns about the safety of opioids and their potential for addiction mean that people who live with pain are facing increasing restrictions on their ability to access these medications. Earlier this year, the Centers for Disease Control and Prevention (CDC) released guidelines recommending that doctors avoid prescribing opioids for chronic pain. Drug abuse is a legitimate problem. But these kinds of restrictions end up meaning individuals with chronic pain are increasingly being left untreated. To solv...

After that medical adventure earlier this year, my lungs are quite miraculously unscathed. When I saw my doctor a couple of days after being discharged from the hospital, she listened to my chest and exclaimed in wonder that my lungs sounded completely clear. About a month later, I had a chest x-ray and in the report, the radiologist focused on the arthritis in my spine, because there was nothing else to talk about. I am a very, very lucky woman. I still use puffers every day and as a result, have had a summer that has been remarkably free of the usual allergy and asthma symptoms connected to growing vegetation. So it’s all good, right? Well, there is one nagging little thing that I’m working on. I still don’t have quite as much air or lung capacity as I used to. If I rattle off an extra-long sentence, I run out of air towards the end. Sure, it’s much better than it was five months ago, but it’s still annoying. So I’ve decided to do something about it. Enter si...