tag:blogger.com,1999:blog-8824828113983189391.post8853717368968943671..comments2024-03-22T07:23:12.169-04:00Comments on Despite Lupus: Lupus may not be smelly, but it still takes some getting used to. Sara Gormanhttp://www.blogger.com/profile/07608238591846611898noreply@blogger.comBlogger5125tag:blogger.com,1999:blog-8824828113983189391.post-33540249546029219372012-09-11T17:13:55.495-04:002012-09-11T17:13:55.495-04:00Wendy - your examples hit right at home! I've ...Wendy - your examples hit right at home! I've uttered those exact phrases so many times, and I'm sure other readers have, too. And the concept of "a place to lie down" still plays such a big part in my daily life. Everything I do after about 1pm HAS to include a napping spot. And I've come up with some pretty interesting spots over the years! Thanks so much for sharing.Sara Gormanhttps://www.blogger.com/profile/07608238591846611898noreply@blogger.comtag:blogger.com,1999:blog-8824828113983189391.post-39443199173942641322012-09-10T23:23:34.961-04:002012-09-10T23:23:34.961-04:00This post really struck a chord with me. It seems ...This post really struck a chord with me. It seems like it was at least five years before I got (mostly) used to living with the diagnosis of lupus. (It's been 7 years now.) For years, I'd often remark to my husband how totally bizarre it felt to have to make accommodations. Like "Today's a nice day, I think I'll go do [fill in the blank]"...then, "Oh yeah, I can't, because it's too sunny/I need to save my energy/there wont be anywhere to lie down/I don't have the strength/my joints hurt too much," etc., etc... I simply couldn't get over it for the longest time!!! That is until, like you, it finally became obvious that making those accommodations, as annoying as it is to have to do so, was the secret to living well. Thanks for voicing what it's like to live this weird experience. <br /><br />Wendynoreply@blogger.comtag:blogger.com,1999:blog-8824828113983189391.post-81225980800422517122012-09-09T17:40:36.102-04:002012-09-09T17:40:36.102-04:00Debs - In fact, I CANNOT smell. Here's a post ...Debs - In fact, I CANNOT smell. Here's a post about my inability -http://despitelupus.blogspot.com/2008/07/this-nose-doesnt-know.html<br /><br />and as far as I know, it's totally unrelated to lupus, doesn't run in the family, and we really don't know why I can't smell. I was curious to see if my kids could smell, and so far, it's clear that Deirdre has a heightened sense of smell. I still can't tell with Bernie - we shall see! 90% of the time, I consider it a blessing...as you illustrated by your comments. That said, the idea of smelling a chocolate chip cooking baking would be kind of nice! Thanks for commenting!Sara Gormanhttps://www.blogger.com/profile/07608238591846611898noreply@blogger.comtag:blogger.com,1999:blog-8824828113983189391.post-38104909700348332722012-09-07T01:38:43.134-04:002012-09-07T01:38:43.134-04:00Hi Sara,
Were you serious when you said you can...Hi Sara,<br />Were you serious when you said you can't smell? Just wondering if smells bother you. It seems as the years have gone by, that the slight smell of pain that no one else can smell, gives me a headache & has me on a sleepover. The exterminator comes yearly since we live in a wooded area. All safe for dogs & humans, but I smell it. This isn't as bad as the paint where I move out for a week or more. But as you can imagine, it was shocking to all of a sudden move out for a week when the smell never bothered me before. Could it be the medicines that have changed over the years? Your blog reminded me it's been on my "to do" list to get a manicure which I haven't had in years. Now I wonder about those smells. As you say, this may be another one of those things to get used to!Debshttps://www.blogger.com/profile/14705802139856939682noreply@blogger.comtag:blogger.com,1999:blog-8824828113983189391.post-41765567844329757372012-09-05T17:15:34.590-04:002012-09-05T17:15:34.590-04:00Oct 12th - The Blackout II Concert / Fundraiser. T...Oct 12th - The Blackout II Concert / Fundraiser. Tickets are available now @ http://www.timblackdetroit.com/events/<br />Proceeds will be donated to Lupus DetroitTim Blackhttp://www.timblackdetroit.comnoreply@blogger.com