Lupus may not be smelly, but it still takes some getting used to.

The girls and I have been on a nail polishing frenzy this summer. On several occasions, we've huddle into the bathroom for almost half an hour, picking polish and giggling over our pretty, glistening nails. It's been great fun, and I've loved sharing my mini girl retreats with my lovely little ladies.

Growing up with only a sister, we had spa-retreats galore in my house. We endlessly fussed over our nails, our hair, and our makeup - and never thought twice about the time spent or the smells generated. Granted, I can't smell, but hairspray, nail polish remover, and the like were just necessary primping tools, and I never gave it a second thought.

Of course, my husband is one of five - 1 girl and 4 boys - so you can imagine that spa-retreats weren't as plentiful in the Gorman household. In fact, while we were visiting my in-laws years ago, I came downstairs after painting my nails, and his brothers acted as if the smell of death had just wafted into the room. I know the smell is strong, but I guarantee a houseful of girls wouldn't have reacted like that. I bet an impromptu mani/pedi extravaganza might have even been set in motion!

It just goes to show that if you're not used to something, it can seem completely out of place and downright weird. It can even feel wrong, or, in the case above, smell bad. But, in fact, it's just different.

And that's the way living with lupus has evolved for me. At first, it was really weird to have to actually carve out time in my day for a nap, when I'd never (ever) had to do so in the past. It felt strange to monitor my exertion levels, limit my sun exposure, and track the hours I worked, when I used to be able to just let those things "happen" as necessary. And the first few (hundred) times I had to say, "No", it definitely felt like an out-of-body experience.

But then I started getting used to living with lupus. And I started seeing the benefit of making those lifestyle choices. And then those choices didn't seem out of place at all. In fact, they felt necessary, purposeful, even normal.  Life just started "happening", accommodations and all. I was no longer making choices - just living. And living well, in fact.

It's a great feeling to be this far along in my lupus evolution. But as you know from reading this blog, the challenges continue to surface, and I still get stumped now and again. But the basics, I feel like I have down pat. A good thing, too, because with Bernie and Deirdre already requesting to "do their nails", I think there may be obstacles ahead!


Tim Black said…
Oct 12th - The Blackout II Concert / Fundraiser. Tickets are available now @
Proceeds will be donated to Lupus Detroit
Debs said…
Hi Sara,
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!
Sara Gorman said…
Debs - In fact, I CANNOT smell. Here's a post about my inability -

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 you illustrated by your comments. That said, the idea of smelling a chocolate chip cooking baking would be kind of nice! Thanks for commenting!
Wendy said…
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.

Sara Gorman said…
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.

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