Making sure lupus is NOT a conversation stopper

When I'm in the midst of symptom activity, I try and make note of how often my symptoms come up during the day - both in the quiet conversations in my head, and those that I have with other people. I do this primarily for two reasons:

1) I realize that how often I talk (or think) about my symptoms typically indicates how disruptive they are to my daily routine. And their level of disruption is a good indication of how unruly my disease has become - which is fodder for both my chronic control spreadsheet and my next doctor's appointment. If, at the end of the day, I've only thought about or mentioned my joint pain once or twice, that's not too bad. Maybe it was when I was trying to open the new bottle of cranberry juice, or as I was trying to finagle the lock on our back door - both of which can be sticky wickets.  But if my joint pain was top of mind all day long, and each hour I encountered movements that made me wince, I need to make note. Joint pain throughout the day is not acceptable, in my book (my proverbial book, that is). I used to think it was, but I've learned not to lower my standards so quickly. Sometimes, there are steps to be taken to eliminate the pain...and I'd like to at least consider those options with my doctor.

2) I'm cognizant of the fact that I have two little pairs of ears that listen quite closely to what I say...about anything, including lupus. I try and dole out just the right amount of lupus tidbits so that the disease itself doesn't seem so scary, but I have to balance that with a little lupus reality, which can be a bit, well, scary. And I find myself wondering what Deirdre and Bernadette really think about lupus. Does it make them worry? Do they think it's inconvenient to have a mom with lupus? Do I talk about it too much? In too much detail? Should they even know when my joints hurt? Should I be shielding them from my discomfort?

But just when I think I need to overhaul my efforts, one of the girls comes up with the most mature, level-headed comment regarding lupus that demonstrates that the balance is, in fact, just fine. I know I've written about their level of lupus understanding before, but here are a couple of insights that have emerged from the small flare I've been experiencing the last few months. At three and five years of age, I couldn't ask for a better grasp on the disease...probably a little clearer and more objective than my own perspective!

A) Lupus is NOT a bad word:

A few weeks ago, I was about to head upstairs to take a nap. Johnny was settling in with the girls, and a neighbor girl came by to play. She's over often, so as I was heading up the stairs I said hello, and mentioned that I was heading up to take a nap. She said very thoughtfully, "You know, I've never thought about it before, but my mom never takes a nap. I wonder why not?"  I looked at Deirdre and she looked at me, and before I could say anything, she launched into an explanation. She explained how I have a thing called lupus, and it makes me really tired and it can sometimes make me a little sick. But if I take a nap everyday, I feel much better and I won't get sick.

Well. I guess we'd met our daily quota for spreading lupus awareness. I congratulated Deirdre on her thorough and accurate explanation, and couldn't help but smile all the way to my room. Whether or not those three little girls truly understand the affects of the disease, they at least know that lupus is not a bad word. It's not something to whisper about. And it's not something to keep hidden.  At least that's the way we're playing it in our family.

B) Lupus isn't something to be afraid of:

I've mentioned before that my girls and I like to primp. We like to spa, do hair, and paint nails. That said, sometimes my joints don't allow me to comfortably use the flat iron, hold a bottle of nail polish, or give foot massages. Thankfully, I've found that when I'm hurting, and even when my joints are visibly pained or swollen - the girls don't shy away from touching, holding, or hugging. Just the other morning, Deirdre came into our room first thing in the morning, and as we were talking, I mentioned that my hands weren't feeling very good.  She looked me in the eye and said, "Oh Mommy, do you want me to hold your hands for a little while?" I've told her before that putting her hands against mine makes my fingers feel so much better - just feeling those perfectly soft and supple fingers and joints gives me hope and helps to ease the pain. But the fact that she so lovingly embraces my hands in an effort to ease the pain of lupus shows me that she's simply not afraid. Bee did a similar move recently - I was running my fingers under hot water to try and ease the discomfort, and Bernadette caught sight of what I was doing. She stopped what she was playing with, came over, and said, "Mommy, let me give those hannies a little kiss. That will help for sure." Indeed, it will, my sweet Bernie.

And they don't stop at joint pain. When my fingers turn colors in the cold from Raynaud's, they are the first to offer up their gloves or rub my hands. And when my fatigue is getting the best of me, Dee will often tell me to come over and lay my head on her lap. Now I'm not saying they're perfect...but they aren't afraid. And I like that.

C) Lupus doesn't affect absolutely everything:

This is a tricky one - because lupus does affect a lot of things. But what I've discovered is that lupus, more than anything, requires accommodation. And if everyone's game for the work arounds, then life can go on as usual. Johnny is instrumental in helping to achieve this level of acceptance. He often just picks up where I've left off - in regard to doing laundry, washing dishes, making dinner, or taking care of the kids. If I'm a little wiped out at the end of the day, Johnny asks the girls what he should make for dinner. If I'm running on empty in the morning, he scoops up the girls and does their morning routine. In fact, Johnny left early for work one morning a few weeks ago, and Bernie and Deirdre came into our room after he'd left. I asked them if they were ready to go down for breakfast, and Bernadette said, "But who's going to make it for us?" Wow. Guess he's been taking over a lot of the breakfast duty. But it works - and the girls have learned that pitching in here and there makes for a happy and healthy mama.

In fact, taking on tasks that they might normally expect me to do has fostered a new sense of independence in them both. And I've enjoyed watching them mature before my eyes. At lunch time the other day, Deirdre said to me, "Mom, why don't I make my sandwich, so you don't have to hurt your hands?"  Bernadette followed suit, and now I estimate three to four times a week, the girls make their own sandwiches. I oversee the process and pitch in when needed, but they're quite proud of their creations. And Deirdre's helped me make dinner numerous times. I know she's at the age where she's eager to learn and experiment, but every once in awhile, she'll gingerly take the whisk from my hands, saying that she should probably do that for me. Hey - if I'm in pain, I say have at it!

But equally as important, lupus suffering isn't all we talk about. We talk about the good stuff, too - the businesses I've hatched because of it, the people I've met, the great meetings and conferences I attend. The girls know my doctors, my lupus friends, and can explain the benefits of the Pillbags to just about anyone. Lupus is simply part of our daily routine. It's not a conversation stopper. It just IS.

Of course, there are those glorious weeks where lupus doesn't come up in conversation at all. But because those weeks are often few and far between, I figure if the girls know a little bit more about systemic lupus than their peers do, so be it.  Most importantly, they know that lupus doesn't interfere with the love I have for them, nor theirs for me. And if it's made them kinder, more sensitive, more compassionate young ladies, that's certainly a consequence I can live with.


Debs said…
Very well put, Sara! As I've explained to people as I've reflected back on our children's lives growing up with this disease called lupus, it had its good consequences. Your last sentence sums my thoughts up perfectly. They are compassionate, sensitive, & caring. As your daughters grow older, you will add capable, responsible beyond their years, observant, leader & confident (just a few I can think of now). As my kids tease, it's now 3rd grade they were doing their own wash :) At least they knew how to do the wash, way before college! One question I had recently, which I don't have an answer to yet. One of their "special friends" asked, "he takes care of everyone, at work, out of work, friends. Who takes care of him?" Two children who give of themselves to help others. Now, can they accept help or ask for help from others? The future will tell. Thank you for your wise words & giving encouragement to more than you know!

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