Showing posts from January, 2012

Notes from Editing Hell

    And it continues… The editing, I mean. Although I finished writing The Book about six months ago, I am still editing and rewriting and then editing some more. And it is kicking my butt. I take great comfort in reading about other people's road to publication. It took Toni Bernard six years to write How to Be Sick  (if you haven't already, join RA Guy’s book club reading Toni’s book – it’s a great way to read a terrific book). Laura Hillenbrand, author of Seabiscuit , has Chronic Fatigue Syndrome and it took her 10 years to write her award-winning book. David Gaughran, author of A Storm Hits Valparaiso , took five or six years to finish his novel and has detailed his struggles with the never-ending edits and rewrites on his excellent blog . These stories reassure me that I am not a hopeless slacker or so incompetent that I really need to stop any thoughts of publishing a book. In related news, going through your book over and over and over again with a fine-too

A Whispered Thank You

    I'm a lucky woman. Thanks to you, my post Sensitive to the D-Word won second place in the Best Blog Post category of the 2011 Canadian Blog Awards. Because of you, more people now know about disability discrimination. Thank you. And why the whispering? This is how determined your body can be to make you sit still: Woke up Monday with a screaming back that didn't want me to move. Despite claiming I'd listen, I didn't – big surprise - and worked anyway. By Wednesday, my body was so disgusted with me that it upped the ante and gave me laryngitis. Since I can't write much without using Dragon Naturally Speaking to write, this meant working wasn't possible. I sort of did anyway (tip: don't type if you normally have to use Dragon. Or so my shoulders told me yesterday). Saw my doctor for my Humira shot and discussed the voice thing. She told me to stop talking until it no longer hurts to do so. Exactly how I'm supposed to know that it no lo



Show Us Your Hands! Establishes Founding Committee to Help Raise Awareness of Inflammatory Arthritis

    Show Us Your Hands! Establishes Founding Committee to Help Raise Awareness of Inflammatory Arthritis  (January 24, 2012) - Show Us Your Hands! is pleased to announce the new collaborative effort of three leading advocates from the autoimmune blogging community. Lene Andersen ( The Seated View ) and Cathy Kramer ( The Life and Adventures of Cateepoo ) have joined forces with RA Guy ( Rheumatoid Arthritis Guy ) to organize creative community projects and effective awareness campaigns aimed at increasing the public’s understanding of inflammatory arthritis. Show Us Your Hands! started as a community collage project in December 2011. The interactive digital collage and commemorative poster include hundreds of photos of the hands of individuals who live with inflammatory arthritis, and represent people of all ages from around the world. This inaugural project serves not only as a symbol of the wonderfully supportive inflammatory arthritis community that continues to gr

Once We Were Caged

    This post is my commemoration of the International Day of Mourning and Memory of the Lives of People with Disabilities . This is a day of remembrance of those who were institutionalized, abused and killed for being different. It is a day to remember those who came before us and who fought hard to make the world a better place for people with disabilities of all kinds.   I had been in the hospital for several years, waiting for hip replacements. It was the culmination of a long period of hospitalizations. Since I was diagnosed with juvenile rheumatoid arthritis, finally, at age 9 after living with pain and swelling since I was four years old, I had spent more time in institutions than out of them. And now, having had a double hip replacements, I could sit up again, got a power wheelchair and halfway through my 16th year, it was time to leave. This was also the time that one of the senior doctors took my mother aside and earnestly spoke to her about discharging me int

International Day of Mourning and Memory

    Dave over at Rolling Around in my Head is spearheading an initiative to create a day of awareness and remembrance called the International Day of Mourning and Memory of the lives of People with Disabilities . In his words, the day would: "be one of remembrance of those whose lives were not celebrated or remembered, the lives of those who were slaughtered by care providers or brutalized to death by bullies. It would also be a day to remember the entire disability community - the elders who came before and who made the world different and better. It would be a day where a moment was taken to pause and reflect and remember." If you want to participate, write a blog post about what this means to you for Monday, January 23 and let Dave know. There's also a Facebook page for the event.  

The Unexceptional

    I have become a wuss. There have been signs that I have deteriorated into a state of perpetual whining, what with the repeated mentions about having no energy. It was starting to bug me, so the other day I asked The Boy for more objective assessment of my health status. And he said something interesting. Well, he often says something interesting, but this particular thing was about me, making it even more interesting. Because it's all about me, y’know. The Boy said that I was miles ahead of where I was two years ago and I knew that. It's something I'm grateful for every day, this part where somehow, I keep getting stronger. However, instead of basking in this statement, I asked for details about the past year because to me, it feels as if I never quite got over that flu I had last June. He opined that my energy fluctuations seem different - instead of having two weeks of mad energy and then collapsing for another two weeks, I seem to be more up and down eve


    I'm plotting a certain something related to The Book. Something that requires proper photographs as opposed to snapshots, so I sent out an email to the talented Raff, a friend of my sister's, who has her own production company . Did she know a photographer? Did she ever. She put me in touch with the equally talented and lovely Sophie Kinachtchouk - take a minute to do drool at her work. She also does amazing wedding photography . I cannot say enough good things about Sophie - she's easy to work with and if you're at all self-conscious in front of a camera, she makes you relax and have fun in no time. These are a few of the great shots she took.        We decided to wander out and about in the neighbourhood to find fun places to shoot - it was a lovely day. Halfway to the corner, I realized my funky new glasses are Transition lenses .So we pretended I was wearing contacts again. I have only very fuzzy mental images of Sophie pointing a camera

The Best We Can

    Back to work I went on Monday, humming that song from Snow White (except I always thought it was "it's off to work we go" and now it doesn't make any sense at all in this post). Okay, it's entirely possible that I wasn't humming - I spent my week’s vacation having a massive sinus infection and feeling pretty miserable for most of it. Naturally, I felt better just in time to go back to work. Given how often that happens to me, I may stop taking vacations. Anyway! By Monday evening, I was already exhausted. I'm a lot more tired than I think I used to be last spring. It's possible that I'm doing more now, maybe I'm not fully topped up on Humira after all or maybe it's something else altogether. All I know is that without the biweekly B12 shots, I'd be toast. And I keep wondering how other people do it. Not healthy people, because I don't expect to have the same energy level as someone who doesn't have RA and fibro…

RA Warrior: An Interview with Kelly Young

    Every now and again, I get to do something for my job that doesn't feel like work. Yesterday, I spoke to Kelly from RA Warrior - after years of reading each other, we finally met on the phone. It was more like a chat with a friend than an interview. I love my job. "'Imagine if the first thing you found when googling RA was the opinions of patients..." Kelly Young is a woman with a mission. She would "like to see other patients do better, learn more and be empowered." To that end, she is a strong advocate and works hard to provide people who have RA with accurate information." You can read the rest of the interview here .   

Faces, Earthquakes and Ebola: Making Pain Scales Work in Real Life

    RA Warrior is doing a blog carnival about pain scales . This is my contribution.   "Please rate your pain on a scale from 1 to 10." Said by many doctors and it sounds pretty simple, right? It isn't. When you live with chronic pain, rating that pain becomes a really complicated question. Pain scales are an attempt to assign an objective measurement to a subjective feeling. And it gets very subjective and imprecise. Let's start with the issue that we all have different pain tolerances - you might find the pain of a bee sting takes up a lot of room in your mind and body, whereas the person next to you shrugs it off. Then there are filters. When you live with chronic pain, you learn to filter out the messages your body sends you unless they're really annoying. A pain scale doesn't really start at 1, it starts at 0, i.e., no pain. When you have pain all the time, your lowest level of pain takes over the 0 spot, but it is not the same as someo

The AID Principle or How to Open a Door

    Sometimes, you meet someone who really gets it. I was swinging by my dentist with the latest payment on the crown that cost enough that I'm sure it's made of a giant ruby. Since nobody was about on the sidewalk, I knocked on the window and waved madly to catch the attention of someone who could open the door for me. A patient in the waiting room saw me and made gestures requesting whether I wanted help with the door. I indicated in the affirmative and she came out to join me. Helpful Person: is it best if I hold the door open from here or come outside? Me: Come outside, please. H.P.: that's what I thought. When my kids were in a stroller and people would hold the door for me, the other way would be more difficult. And then we laughed companionably, continued chatting and I entered my dentist's office without any further issues. I would like to nominate this woman for Best Assist of the Year for demonstrating a thorough understanding of the

Real RA: It's Not Just About the Jar

    The drug commercials like to show couples walking on the beach with a dog (it's always a beach with a dog), but real RA is not like that. The image of remission is a return to sparkling health with no lasting effects, but real RA is not like that. This is the first in new series of posts about the ways RA affects your life, the unvarnished version.   Last week, Kelly over at RA Warrior tweeted a link to a post about the silly things people with RA say . It’s a brilliant list of the overly optimistic things that come out of our mouths, such as committing to being somewhere early in the day (impossible because it takes a while to get going when you have RA) or the "me do it" ridiculousness that inevitably brings about a flare in symptoms. Opening jars - or rather, the inability to do so - is often mentioned as the ultimate example in frustration, smacking into your limits and plain humiliation. For Kelly, it's not a jar, it's a set of heavy blinds.


    It's commonplace to make promises to yourself around this time of year and normally, my primary promises to not get caught up in the resolution obsession. Too often, it leads to a severe case of self-loathing as you take stock of your life and find it wanting, making promises to yourself that you don't keep. When you look at a brand-new sparkling year, thoughts of change should be about something more than limiting your intake of chocolate chip cookies, shouldn't it? It should be something that, to borrow a phrase from myself, honours your life and the people you love. To that end, I've had some thoughts… Last week wasn't bad. I was counting down the minutes to having 10 glorious days off and trying to get every item on my to-do list done. For once, I had been reasonably realistic, meaning there were only about 20% more items than I could feasibly do and, more importantly, I was aware of this fact. Still, I was tired - the holiday season kicks butt. On