Friday, July 30, 2010

Lupus symptoms add up quickly, don't they?

Last week, I had the pleasure of talking with a young woman recently diagnosed with Rheumatoid Arthritis. When we spoke, she'd been diagnosed just 1 week, had read my book, and was heading to the doctor within the next few days. She had questions, but she sure sounded like she had her stuff together to me! She had her lists of questions, a health resume, as she called it, and she'd done a bit of research on the current RA medications. She was armed and ready - but I was happy to talk with her to share my experience and compare notes.

At the beginning of our conversation, she mentioned one or two symptoms she was having, but felt that her RA diagnosis had come more from the blood work then any physical symptoms she was experiencing. The more we talked, however, her one or two minor symptoms seemed to increase in number - as she began to really take stock of all she's been dealing with, her physical symptoms really started to add up. As she spoke, I realized just how much she reminded me of myself.

It's all too easy to become accustomed to the "routine" - the myriad symptoms that one just has to deal with - that it's hard to gain perspective on how disruptive a chronic disease can be. We convince ourselves to cope with the little bit of fatigue once or twice a day, or a little joint pain here, or a little stiffness there - when we should be taking a comprehensive look at what's really going on with our bodies, and determine if something needs to be addressed.

Take my recent joint pain and swelling: I mentioned my finger and knee swelling in an earlier post - but did I also mention that an area on the side of my foot had been mysteriously swollen a few days before? Or that my elbows had been a little tender to the touch lately? Did I also throw in the fact that I'd had a sore throat for a few days? I mean seriously! I'd say those add up to a whole heap of lupus, wouldn't you?

I can assure you - I wasn't denying I had the symptoms - I was just considering the symptoms individually, and attributing each to a different cause: my foot was because of some new shoes, my elbows were from leaning against the pool wall, so on and so forth. But when you're dealing with something systemic, it's important to be as in tune with your body as possible, thus allowing you to make adjustments as early and often as necessary...like cutting yourself off from the toolbox, slowing down on your errands, or fitting in a little more rest time.

Of course - this is where my chronic control spreadsheet (which I currently don't keep because my symptoms are so few and far between) works so well for me. It helps me keep tabs on my body as a whole, rather than attempting to sort out all of the symptoms in my head or create a mental image that I can't go back and reference.

What's most important, of course, is that however you tally up your symptoms, you don't underestimate the beauty of being symptom-free. My friend with RA is in a great place right now - she's anxious to start medication in order to get her disease under control. Imagine her surprise when she no longer has to fight the fatigue that she's become so used to, or the pain in her knees, or the stiffness in her neck? These symptoms, as ever-present as they may be, have just become part of the "routine", but what a glorious day it will be when they're no longer part of the scenery.

I thank her for bringing me back in line - for allowing me to tally up my own list of symptoms in order to pull back a bit. I DID need to slow down, particularly where Deirdre's new room was concerned. I was running all over town, trying to pull the whole room together...and hitting the toolbox hard on top of it. And even if the symptoms were (knock on wood) short lived, those collective symptoms are a reminder that I DO have lupus, and that if I'm going to take good care of Deirdre, KitKat and the rest of the Gorman household, I need to ease up and take it slow.

So it's still hands off the tools. In fact, as anxious as I've been to put up the borrowed crib that Deirdre's going to be using in her new big girl room, I think I'll give it another few days. Because with the crib, comes the washing of the new bedding, and then putting it all on, and then finding drapes to match. That can wait another few days, don't you think?

1 comment:

Katie G Rice said...

It's interesting, because once I read this post and the previous toolbox one, I went back in time to my two pregnancies. I have one word: nesting. As funny as it may sound, there is so much truth to the biological impulse pregnant women have to get ready for the upcoming arrival of a little one.

Practically speaking, there are TONS of things you really want to get done before the wee one arrives, because the newborn will take up so much of your time. But, in my opinion, some of the frenzy mommies-to-be feel is visceral and extremely hard to fight. So for a doer like yourself, this added nesting urge must feel so hard to resist.

But good job recognizing your body's response to this added fervor. I know I got myself sick during my last pregnancy because I didn't want to slow down.