Ankylose This! Living with Ankylosing Spondylitis

Monday, November 22, 2004

Contributing to Ankylose This!

We interrupt this blog for a recruitment ad.

Ankylose This! is a group blog about living with ankylosing spondylitis. I'm inviting bloggers with ankylosing spondylitis to join and contribute to this blog. Membership is limited to ankylosing spondylitis sufferers: this is about our disease, our pain, our experience. It's probably better if you have an existing blog, but it's not strictly necessary. To join, contact me using this form and I'll send you an invitation through the Blogger system.

Anything to do with ankylosing spondylitis is appropriate subject matter for a post: the latest news about the drugs we use; people with ankylosing spondylitis in the media; links; personal experiences. Venting about the pain is definitely okay, so long as it doesn't go overboard. This blog is public; be mindful of your audience, and the fact that your audience could include anyone.

New members may want to introduce themselves and tell us how they were diagnosed and where their disease and treatment are right now; see my and Richard's posts as examples. It's not required, though.

I've applied a Creative Commons licence to this blog: it allows copying and distribution of the text contained in this blog so long as the authors are given credit, the distribution is not for commercial purposes, and no alterations can be made. Let me know if you want to contribute but have concerns about the terms of this licence.

Comments are welcome from anyone -- including the healthy! -- though Blogger registration is required in order to post a comment. (I've decided that talking about our disease is too personal and sensitive to allow for anonymous drive-by commenting, though you may disagree.) Contributors should definitely post comments all over each other's entries.

Update 17-Jan-05: I want to clarify that in order to comment on a post here, you only need to have a Blogger account -- you don't need to e-mail me for that, just sign up at Blogger. To make a new post, though, you need to sign up with us.

X-rays

From the medical school of the Memorial University of Newfoundland, a little page about ankylosing spondylitis that has several useful x-ray photographs of our condition.

Saturday, November 20, 2004

A Sista with Spondylitis

Thanks to a search through Technorati, I stumbled across another blog about ankylosing spondylitis by a fellow sufferer: A Sista with Spondylitis by Kim Pearson. It has its viscerally personal moments, which by my lights is a good thing. I look forward to more posts from her.

An appointment with my new rheumatologist

Last week I had a long-scheduled appointment with a new rheumatologist -- the first I'd seen in some time, barring the fact that my previous general practicioner was also one and was able to do a bit on my behalf. Certainly the first I'd seen since moving out to Shawville a year and a bit ago. My doctor in Shawville, not a rheumatologist herself, wanted me to see him; she was worried about the long-term effects of all that naproxen.

Surprisingly, the fact that he was an hour and a half late to see me was considered a good thing: he's very thorough, takes his time with his patients. As a result, he falls further and further behind during the day. I had a good hour with him, which I think is excellent.

His verdict, after the usual barrage of flexion tests, is that my flexibility is absolutely normal for a sedentary person who's a bit overweight. Which is to say that being sedentary and overweight is a problem, but that, after more than seven years of ankylosing spondylitis, I'm as flexible as a non-spondylitic someone of similar lifestyle and physique.

Now clearly I've got to do something about that. But, as I told him, I'm surely not the only one of his patients who doesn't do his exercises. That I've got to work on. The sedentary lifestyle's going to be a challenge: I'm trained for intellectual (read: desk) work, but my body wants me to be a forest ranger. (I'm also gaining an appreciation of the challenge of getting out and about in a small town of 1,500 people: there isn't much cause to go for a walk around here.)

Still, it's encouraging news, despite the fact that pain levels have been above-average for the last month or so. About which he also had to say that AS patients seem to suffer most in spring and fall. People always asked me whether the weather had an impact. Apparently it does -- or at least the seasons do.

Playing in pain

The Goldsboro News-Argus (covering Wayne County, North Carolina) has the story of a high school student who, despite her ankylosing spondylitis, pushes herself to play softball.

Meredith Wilkerson plays softball with all the passion she can muster. Whether playing for Charles B. Aycock High School's successful program in the spring or for a traveling team in the off-season, Wilkerson loves the game and plays it with ease.

She also plays in pain -- all the time.

Wilkerson, entering her senior year at Charles B. Aycock, looks and acts like any other teenager. But she has a disease that most people associate with the elderly -- ankylosing spondylitis, a rare form of arthritis that has been attacking her for the last three years. It is especially rare in girls -- which makes Meredith's situation even more unusual and remarkable.

I have to confess that I'm a little bit ambivalent about stories like this. I've sometimes felt that the disabled and the chronically ill are only allowed to have a positive attitude, so that others can be inspired by us; while I'm amazed by stories like Meredith's (and that of her sister, Tabitha, who incredibly also has AS), it's an awfully intimidating standard to match, especially when in you're in flare and in too much pain to do much of anything. Nevertheless, I'm still awfully impressed. I wish I had their tenacity.

AS and sports

Came across a couple of articles about competitors with ankylosing spondylitis recently: British snooker player Chris Small and Australian cricketer Michael Clark. Each had their performance affected by AS -- a flareup and a diagnosis thereof, respectively. More grist for the celebrities-with-our-little-disease mill.

Thursday, November 04, 2004

concerns about cox-2 class of drugs

CBC Radio reported this tonight.

Questions raised about other arthritis drugs


 
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