Monday, June 28, 2010

Breaking the rules...of lupus

The other day, Deirdre was upset because I wouldn't let her do something that she really wanted to do. (Goodness knows what it could have been - something heart wrenching, I'm sure, like asking her to drink her cup of milk in the kitchen, or requesting that she not draw on the walls with her chalk. What kind of mother am I, huh?) Anyway, she was NOT happy with my refusal to comply with whatever she wanted, and so she flung herself on the floor and pouted for oh, about 20 seconds. And during her little tantrum, I found myself walking away, saying to her, "Well, don't look at me, I don' t make the rules." But of course, once those words came out of my mouth, I realized, that, in fact, I do make the rules. Ooops. My first fib to Deirdre. I hope she'll forgive me.


But I got to thinking about this concept of "breaking the rules" - which is exactly what she wanted to do with her cup, or the chalk, or whatever - but I wouldn't let her. And I was thinking that as we get older, there really are very few people who force rules upon us...we're kind of in charge of sticking to the straight and narrow ourselves. But there's one entity, I'll call it, that does enforce rules upon me - and that's that nasty chronic illness of mine called lupus. While I'm pretty fat and happy living well, despite lupus these days, I do find that there are a few rules I'd like to break with lupus. I don't hate EVERYTHING about lupus - without it, I wouldn't have this blog, or have published a book, or have connected with thousands of people across the world, or have gotten my priorities straight early on in life. But there are a few select rules of the lupus game that I wish I could break:


The nap - I know, I know. I'm actually quite thankful for my nap, and the fact that a mere 2 hours out of each day gets me a whole life of normalcy is pretty great...but I would be fibbing if I didn't say that not having to fit in a nap each day might be, well, kind of cool. I know it's great that I have a built-in excuse to nap, but I'm just saying...the doer in me would have a field day with those two hours.

The neo-natal lupus aspect - A DL reader and I were recently emailing about that fact that when you're considered a high-risk pregnancy, you're like the VIP of the maternity ward - you get the best treatment, usually go to the front of the line, and typically get cut a little more slack with the lactation consultants and the nurses in general. All in all, it's not a bad deal, particularly since I get to see this little munchkin in my tummy about a dozen times during the pregnancy, rather than just the typical two sonograms with a normal pregnancy.


So do I mind being pregnant with lupus? Not really (especially without those daily lovenox shots this time around!) But would it be kind of nice not to have to even consider the aspects of having a lupus pregnancy - the congenital heart block, the medications and the effects on the baby now and during breastfeeding, the concerns during delivery, the post-partum flares, the possibility that KitKat could be born with signs (temporary, though they may be) of lupus? Absolutely. And while I can't say I'm happy about the fact that I could be passing on this chronic illness to Deirdre or to KitKat, I have to say that today, I wouldn't trade my life for anything. And if they, too, have lupus down the road, I'll just have to show them how well you can live, despite it.


Swelling with infection or illness - This one isn't all that bad, but I'd be kidding you if I said that when I get a cold, or allergies, or the flu, I wish I didn't have to contend with the effects of lupus, too. But, again - my doctors do a pretty good job of pushing me to the front of the line when I'm sick...so I can't complain too much. I get great care, can always get an appointment, and I feel that they take extra special care of me when I'm ill. Or maybe they're just worried that if they don't, they'll read about it here. Hmmm. What a strategy!


The sun - And while this one is DEFINITELY a "I wish I could break this rule" contender, I have to say that staying out of the sun has saved my skin (and a few freckles) in the long run. My mom is a perfect example of staying out of the sun. As a kid, it used to drive me crazy that she wouldn't participate in sunning activities with us...but now, as she ages, I see how much she's saved her skin. Her sweet little wrinkles are there, but not nearly what they could be or would have been had she been an outdoorsy kind of a gal. Of course, I'd like her to walk up to the corner of her street and back at dusk a few more times than she does, but that's a different story, and, I suppose, a different blog altogether.

So there's my short list. Have any lupus rules you'd like to break?

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