SmokeyAngel has been writing about her AS on her LiveJournal account. I can relate (on the basis of my own diclofenac experiences alone).
Thursday, October 27, 2005
There's also an ankylosing spondylitis community on LiveJournal, though it's not very active: the last post was in February.
There's an ankylosing spondylitis group on MySpace.com (yes, there's a typo in the URL, but that's what you use). MySpace.com's members seem awfully young (compared to other sites, at least), and there's a lot of them, and AS at least begins as a young person's disease, so this may be a group to watch.
Friday, October 21, 2005
The Desert Sun reports the following unbelieveable story: Matt Weyuker, the Mayor of Desert Hot Springs, California (it's just north of Palm Springs), who himself is not seeking re-election due to health problems, wrote that a city councillor with ankylosing spondylitis should not be re-elected because of his condition. In his column for the local biweekly, he asserted that the disease "has taken more and more out of him. [...] In fact, the disease that grows worse with each passing day, nearly took his life twice this year!"
This was, naturally, pure bunk. The councillor in question, Gary Bosworth, who's had AS since he was a teenager, responded by having his physician appear at a council meeting; according to the Desert Sun, Paul Steier's presentation was nothing short of a tour de force:
"What they don't wind up with is any decrease in their life span or life expectancy (or) in their cognitive functions," Dr. Steier told the City Council. "It doesn't affect their ability to hold office and be of service. Where do we draw the line? The next thing we're going to be talking about is people's ability to hold office if they've got hypertension, or diabetes or male-pattern baldness." Steier implored the City Council to focus on issues instead of "perpetuating myths about people who have some physical limitation that other people don't and creating myths that simply aren't true."
The Desert Sun writer was, in all, quite disgusted with Mayor Weyuker:
Weyuker completely mischaracterized and misrepresented Bosworth's condition. If Bosworth is not physically capable of holding public office, that is a decision for his doctor and him to make - not the mayor. The city does not need someone to replace Bosworth. What it needs is a mayor who is tolerant and accepting of those who are different. Bosworth is different; that is his greatest strength.
Personally, I'm trying to decide whether Weyuker is merely odious or simply outright insane. Those of us with AS know what the disease can do to us, but the vast majority of us continue to function and to contribute to society. If nothing else, look at the sheer number of stories posted to this blog over the past year of AS sufferers who've refused to let their disease shut down their lives. Is it an obstacle? You bet. But I'll be the judge of what my disease allows me to do.
Weyuker said that he and Bosworth disagreed politically; to use someone's disease as a political weapon against him, to say that as a result you should support his opponents, and for no other reason, is beyond disgusting. It's filthy.
Friday, October 14, 2005
Has anyone experienced AS-related problems with jaw joints?
Mine is very painful.