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Broadening your vocabulary: Has lupus helped?

Posted Jun 18 2010 5:00am

This little lady doesn't look like she has a care in the world, does she? Well, most of the time, she doesn't. But if you were to ask her, she might look around for a few seconds, spot the boo-boo on her toe, and immediately launch into a baby-blabber dissertation on her recent "toe stubbing" - why and how she came to stub her toe, whether or not it's hurting at the moment, and she most certainly would brief you on how the stubbing incident has affected her since.
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I'm telling you - this toe has gotten way more attention than it deserves. It's like every time she finds herself for a loss of words (which isn't often), she'll grab her foot, show you her toe, and say, "toe", or any of the other dozen words related to the infamous stubbing.
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The good news is that her vocabulary has increased significantly since the incident. She's perfected words like, "foot", "boo-boo", and "medicine", which were already part of her repertoire, but are now permanent fixtures in her daily vocabulary. And words like "toe", "nail", "hurt", "bleed", "tight", (for the shoe that brushes up against her ailing toe), "ouch", "band-aid", "sandal", and "fast" (because running fast is how we stubbed the toe in the first place) have now been added to her list. Like I said, when she talks about her toe - she's still in blabber mode, but she throws in enough big girl, grown up words that you know exactly what she's talking about...which is, of course, the stubbed toe.
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So this little exercise has caused me to wonder if I, as a lupus patient, have expanded my vocabulary over the past 10 years. And the answer is undoubtedly, "yes." Words like "pleural effusion", "anticoagulant", "cutaneous", and "nephritis" never even crossed my mind before - and I certainly didn't think I'd ever need to understand what they meant.
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Even larger, more looming concepts like immobility, debilitation, and convalescence really didn't mean anything to me before lupus; I may have known the meanings of those words, but I certainly didn't realize the impact they could have on someone like me.
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I never even thought of issues like insurance coverage, 24-hour pharmacies, or our house's proximity to a hospital as "things to consider." Now, I do.
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And that doesn't include all of the medications, side-effects, symptoms, treatments, and therapies with which I'm now intimately familiar. "Corticosteroid" just rolls of the tongue, as does "alopecia", "serology", and a whole host of other terms that I use on a pretty regular basis.
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And I've witnessed this phenomenon in other people, too. My sister-in-law throws around words and concepts about gestation and premature birth conditions that I know she never knew before; a beloved babysitter of Deirdre's now knows more about dysautonomia and the autonomic nervous system than she ever thought she would, now that she's been diagnosed with POTS .
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Do they wish they didn't know what they do? Of course. Do I wish I wouldn't have such a personal and thorough understanding of what it means to live with lupus? Absolutely. But if this is the path that's been chosen for us, for reasons that, today, we may not understand, we might as well benefit from the experience.
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Three perfect examples of individuals becoming enlightened, informed, and educated about certain medical matters in ways they never thought possible. I tell you - I never thought I could have such an intelligent, articulate conversation with a doctor as I do today. Talking with pharmacists, technicians, and others in the medical profession comes so easily -primarily because I have the vocabulary to keep up.
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And believe it or not - matters like these DO make for good party conversation. More people than you think struggle to care for a chronically-ill parent, an ailing child, or deal with a rare, unknown medical condition that runs in the family. In my experience, those people are just so happy to find even one person who can begin to understand what it's like to deal with issues like these. To be faced with all of that lingo and medical jargon is overwhelming. And to be forced to make sense of it all can feel next to impossible.
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And that, of course, is all part of what it means to be living well, despite lupus. Not just physically, but emotionally and mentally, too.
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Am I a more educated and informed individual because of lupus? Absolutely.
Am I a more compassionate, considerate person because I have a chronic illness? I'd like to think so.
Am I a more emotionally mature and self-aware thirty-something because of my disease? Oh yeah.
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But is Deirdre a more patient, obedient, responsible 20-month old because she stubbed her toe? Uh...not so much.
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