The Seated View

Back in the day, people were so squicked out by disability that governments felt compelled to make ordinances preventing citizens who had disabilities from being in public places. They were called "ugly laws," not referring to the laws themselves, but to the state of appearance which they were intended to curtail: " No person who is diseased, maimed, mutilated or in any way deformed so as to be an unsightly or disgusting object or improper person to be allowed in or on the public ways or other public places in this city, or shall therein or thereon expose himself to public view, under a penalty of not less than one dollar nor more than fifty dollars for each offense." - Chicago Municipal Code , sec. 36034, repealed 1974   I've written about the freak label before and at that time, it was in connection to a story about how a BBC children's show host with a disability prompted a number of formal complaints from the public. Today's post is ...

Photo by David Govoni Sometimes, RA doesn’t just take. Sometimes, RA gives. When I still lived with my parents, I was in charge of pies. I'd found the perfect recipe for the crust and loved experimenting with different fillings. Our kitchen wasn't very wheelchair accessible, so my mother would place the ingredients and tools on the dining room table and I'd get to work. I love the feel of flour between my fingers — the cool softness of it, the way it packs into smooth shapes that fall apart with the slightest touch. After adding slices of butter, I'd mix it into the flour with a pastry cutter until it was a pile of pea-sized pellets and then get my hands in the bowl to smush them together into a ball of dough. You know the rest: rolling the dough into a large circle, carefully adding it to the pie pan, fluting the edges and adding the filling. Shortly thereafter, the delicious smell of baking pie would waft through the house. I grew up in a baking househ...

Last Friday, I went to a Toronto concert hall to hear David Sedaris read from his new book Let's Explore Diabetes with Owls — a book that apparently has nothing to do with diabetes, although owls do make a rather hilarious appearance . I had no idea what to expect. In fact, on some level I confused David Sedaris with Dan Savage – they are funny gay men who write and have the same initials. Natural mistake. A-hem. I have a couple of books written by the former, but haven't read them yet. That's going to change very soon. David Sedaris is my new favorite writer. When he read the essay linked to above, I discovered that in one respect, I'm very much like this very funny man. Because I spent a significant part of the past week trying to find out how to contact him so I can ask how much the pygmy cost. It's wrong, I know it is, but I still need to know. How is David Sedaris not on Twitter? Anyway! This post is not about that. This post is about something else en...

This week on HealthCentral, I wrote about some very interesting studies of what happens in the brain when you're in pain: "Have you ever felt that your doctor underestimated your pain? Have you ever felt that others didn't believe you have pain? Have you ever wished you could prove that you're in pain? An exciting new development has wide-ranging implications for the assessment and treatment of pain. Studies of Pain Using fMRI Researchers are using functional magnetic resonance imaging (fMRI) to study what happens in the brain when people experience pain. Functional MRIs provide a sort of 3-D movie of the brain as it response to pain." You can read the rest here        

When Marianna and I talked about me stopping by her blog A Rheumful of Tips , she suggested doing something a bit different. We batted some ideas back and forth and settled on a video. Of me.  There's a reason I'm a photographer, not a model. Well, aside from not having the ability to subsist on lettuce leaves and water. I'm not comfortable in front of the camera, but thanks to Marianna, I got to challenge myself and learn lots in the process. Hop on over to A Rheumful of Tips to watch the results . Also: enter to win a copy of Your Life with Rheumatoid Arthritis in the giveaway!   

I am beyond thrilled to tell you that I've joined CreakyJoints as a regular blogger. They're a terrific organization and do important work for the inflammatory arthritis community - I've been a faithful reader of their posts for years and am pretty chuffed to be part of the group now. My first post for them is about the origin of my perspective on living well with chronic illness. More specifically, two moments from my past that have shaped who I am and how I think about living with RA. The sources of inspiration: my parents and a psychic: "I had a great time writing a guest post for CreakyJoints a couple of weeks ago and was thrilled when they asked if I wanted to become part of the team. After years of reading the great posts published on the site, of course I wanted to be part of the team! My little corner will be called Lene ’s Seated View. Like the title suggests, my thoughts on living well with a chronic illness will occasionally be of a slightly philosophic...

Things went a little nutty last week and the blog suffered. Again. Sorry, blog. Better late than never? Last weekend, the Tinks came to visit and we all went out for lunch to celebrate the long weekend and two birthday goddesses: my mother and my sister. First, as is traditional, The Boy was covered in Tinks in 1.2 nanoseconds. We thought this more appropriate for Palm Sunday, actually Muffin was shocked Morgan's getting a lot of joy out of her camera while Liam had an intense discussion with my sister about life, the universe and everything Then off we went to a local pub for lunch. You can tell Spring is here by the patio preparations. Which naturally meant a petting zoo for children (here impersonating chickens) At lunch, Liam and Scott got into a staring contest.  Photo by Janne/TinkMama   While I was fascinated by the biggest French fry I've ever seen Liam and Morgan "borrowed" Scott's phone to play Angry...

You may have noticed I've been a bit scattershot in my approach to posting lately, but I have a good reason. Several good reasons. There's been a rather a lot of work, a lot of book promotion and just recently we dove into making the paperback. This means reading the damn book again. Not that I don't like my book — I am quite proud of my baby and when caught unawares will admit to thinking it's pretty good. The reason I am saying bad words in connection to the book is that I have read the damn thing (oops, there it was again) at least nine times since November and thought I wouldn't have to do it again until putting together the second edition a couple of years from now. Nope. I wanted a paperback. Which is a good idea, because a lot of people have told me they want a "book book," something they can hold in their hands, lend to their friends and family and so on. And to be honest, I want a book book, as well. I'm thrilled to see Your Life with Rheu...

I have what can best be described as a crapload of allergies. Some of them have been around since I was a kid — if I ate too many grapes or apples, I’d get hives — but others are new additions. First came kiwi, then 15 years ago certain kinds of nuts arrived, taking with them all other kinds of nuts due to the risk of cross-contamination (I miss nuts…). Then came Enbrel, which made me allergic to what seemed like the entire world. Since I started Humira, I’ve gradually added back foods, but still have a number of interesting limitations, what between cross allergies — did you know that if you're allergic to kiwi, you probably have a cross allergy to melon? I found out the hard way — aggravated histamine levels thanks to Humira and my body’s just plain persnicketyness. Living with a crapload of allergies is a pain in the arse, particularly nut allergies. Because of the cross contamination issue, having a nut allergy means being pretty paranoid about other kinds of foods. Yo...

The latest stop on the Your Life with Rheumatoid Arthritis Blog Tour is Getting Closer to Myself, Leslie Rott's blog about living with the double whammy of RA and lupus. Leslie is a graduate student in sociology and asked some great questions. I thoroughly enjoyed the opportunity to delve deeper into the topic. You can read our Q&A on Leslie's blog here .   

I blame Laurie for this. A week ago, she wrote about incorporating more fruits and vegetables in her diet by making smoothies . Kale smoothies, in particular. My naturopath has been trying to get me into smoothies for while (a long while), but no luck so far. Then I read Laurie's post and got all excited about her mentioning the NutriBullet . Because the Bullet has intrigued me for some time (and I know some of you out there are now snickering for reasons completely unrelated to the topic of this post). I'm talking about the MagicBullet . The smoothie making blender thing. Anyway! I've been tempted to buy it for a while, but wasn't sure how well it would work and never quite got around to it. That happens a lot around here. Enter the NutriBullet. It looked sturdier than the MagicBullet and is specifically designed to have a stronger motor that can get at the fibers in things like kale. Which is good for you. It has calcium, something that I'm more conscious o...

Today, my little sister turns 40 years old. It seems impossible. I mean, she looked like this just the other day My mother has a theory. For as long as I can remember, she's told us that women come into their own at 40.That this is the age where you stop being so worried about what other people think and rely on your own judgement. You get strong, you get opinionated - okay, in the case of the women in my family, more opinionated - and you figure out who you are and what you want in life. And then you go get it. My mother is always right. Every woman I know has made a shift around the age of 40 and my darling sister is no different. Janne has always been the bestest to me. Although there's 10 years between us, we've always managed to bridge the gap and remain not just sisters, but friends, as well. Every day, I count myself lucky that she's my sister. And every day, she is more beautiful, more self-assured, smarter, stronger, and a woman to be reckoned with. ...

People with RA lie all the time . How are you?   Fine. You? How’s the pain today? Not bad. Are you worried? Not at all. I’m sure everything will be OK.   It’s a necessity of life with this damn disease. If you're honest, not only will your friends and family start avoiding you, but you'll start to bore yourself, too. There's only so much unrelenting crap anyone can deal with before it gets old and miserable and you want to run screaming for the hills. But when you live inside the crap, there's no way to run. And so you lie. You lie to the people you love most because seeing the worry in their eyes makes you want to protect them. You lie to acquaintances because it takes a certain level of intimacy to talk about the true impact of your RA on your life. You lie to the clerk at the grocery store because she doesn't really want to know how you are while cashing out your orange juice, crackers and toilet paper. You lie to your doctor, tel...

Jenni is 16 years old, lives in the UK and has the best Twitter handle I've seen in a while: @pinger_genguin . Brilliant, right? She raises awareness about chronic and invisible illnesses on her blog MyLungsMyLife. Earlier this week, I wrote a guest post for her about juvenile arthritis .  Thanks so much for hosting me, Jenni!  

Something pretty exciting has happened.... "RAHealthCentral is thrilled to announce a new positive way of raising awareness about juvenile arthritis! We recently had the opportunity to collaborate with The Dr. Oz Show to bring information about juvenile arthritis to his viewers, which number in the millions. An article written by yours truly has been posted on The Dr. Oz Show website ! It covers information about juvenile arthritis and what it means for the children and families affected by this disease." You can read the rest here . We're also hoping to get the community involved in raising awareness about JA. If you're the parent of a child with juvenile arthritis or have juvenile arthritis yourself, we ask that you hop on over to the Dr. Oz website and tell your story in the comment section on my article . Personally, I hope that by many people posting compelling stories in a positive way, we can demonstrate to the show that there's a good reason to...

A couple of weeks ago, the lovely people at CreakyJoints asked me to write an invited blog for them. They wanted to hear more about the process of writing the book. I was very happy to oblige. The post is about three factors that are important both to writing a book and living with RA. And my secret friendship with Laura Hillenbrand . You can read the post here .

I took the weekend off and it was just lovely. Not just because I wasn't working, but because the weather decided to play Spring. I meandered off with my camera, intending to take photos of construction sites and I did that, too. But somehow I ended up down by the water again.  I know. Big surprise. This time, I wandered pretty far afield, further than I've gone in a while. Before I knew it, I found myself at the foot of Yonge Street, the longest street in the world (although something about the Wikipedia entry makes me think that another country has snagged the honours). There were ducks. Interesting ducks, quite different from the regular quackers . Not that I don't love them, too, but as I may have mentioned before, I'm sort of getting into this birdwatching thing. Everybody were just hanging out, including the guy in a kayak The cast of characters were several longtailed ducks and another one that I think was a female Merganser, although I'm no...

I was thrilled to stop at Andrew Lumpe's Living with Rheumatoid Arthritis to have a chat about the book, writing with RA and a disability and a mutual geek out about the state of research and the digital world. Andrew also did a lovely review of Your Life with Rheumatoid Arthritis. You can read his post here .

I'm always on the lookout for cool toys for Lucy. Partly because she spoiled and partly because she's pudgy. Toys will make her move. At least theoretically – it's been a while since there's been one she's excited about and to be honest, she'd become a bit of a lump. And then I discovered Neko Flies . The beginner kit is a very sturdy stick and a "bug" on a – again very sturdy — string. It attaches with a lobster clasp to a ring on the stick and you can get different bugs separately for variety. I bought the Kattipede . The Boy was with me and asked if I were sure that this was a toy worth $17. I said it was worth a shot. And boy, has it proven to be worth $17! Lucy has excellent hunting instincts and has been known to hunt, kill and eat an errant fly within a few minutes. This toy activates her hunting instinct, her desire to run and her curiosity. She loves it. To the point that she'll sit expectantly next to my hallway dresser where the ma...