Invisible Lupus

10Sep2014 Filed under: blah-blah-blog
My face

You look at me, and I don’t look sick.

You’ll notice I’m quite overweight, and if I’m limping, you’ll probably assume it’s because of that.

I sure don’t look old enough or injured enough to need a handicapped parking permit, or a scooter, and truth be told, pure pride is what’s kept me from ever acquiring either. My rheumatologist gave me the form to get a handicapped parking permit years ago and I let it expire. Stupid? Probably. I just couldn’t do it. And I’ve never asked for another one.

I already draw attention from being big, from having adopted transracially, from having more than 2 kids. I don’t need parking lot confrontations over whether I “look like I need” a handicapped parking spot, or having my kids embarrassed because people think I’m too fat and lazy to walk into and around Kroger like a normal person.

I don’t care how much I hurt, unless I’m in a body cast, you’re not going to see me doing either of these things. At least, not yet.

I don’t write much about lupus. I guess because there’s still a part of me, after it took ten years to get a diagnosis, that wants to think maybe I don’t have it. And who knows? Maybe I don’t. Maybe it’s some other autoimmune funky thing going on that doesn’t have a name yet. But after waffling back and forth (Yes, you have lupus. No, you don’t have it. Yes, you do.) we’re just going to call my dreaded “IT” that for now.

I probably also don’t write about it because who wants to listen to someone grumble about their aches and pains? If I do so around anyone older than me, I hear “Oh, just wait til you’re older–then you’ll really hurt every moment of the day!” And if I grumble to anyone my age or younger, they think I’m a crotchety old fart.

Trouble is, many days, many weeks, I feel like I’m about 80. I told my husband the other night, as I tried to get comfortable in bed, that it felt like every single one of my joints had been sprained simultaneously. Every knuckle throbbed, every toe. Even my ribcage felt like it had been beaten, front, back and sides.

The aching. You just can’t imagine it if you haven’t felt it.

I just shifted in my chair and pain ebbed through my legs like I’d ran ten miles yesterday, when all I did was shop, cook and clean — and not even that much. Sometimes at night, I have to gather courage to roll over because I know it’s going to hurt.

The past two weeks, I’ve battled exhaustion. Again, the exhaustion — it can be hard to describe.

Think of the last time you were coming down with the flu, when you were hit by a tiredness so deep, you had no choice but to lie down. Or, early pregnancy — it’s that same kind of all-encompassing exhaustion that drives you to bed whether you want to go or not.

Sometimes it feels like someone suddenly pulled the plug, and all your energy just poured out and evaporated. And then it doesn’t return, sometimes for days. Sometimes, not for weeks.

Last night, I was so tired after cooking dinner that I was too nauseated to eat it. I sat down on my bed until the nausea passed and I had enough energy to fix my plate.

There’s a running joke in the family that I am physically incapable of watching a movie, because it’s rare that I can stay awake that long. I avoid my recliner all day, calling it “The Chair of Doom” because if I let myself get that comfortable during the day, I will be OUT like a light. Part of that is because I don’t sleep well. Insomnia is also a common issue with lupus. So you add up the lack of sleep, the pain, the exhaustion from the disease and it’s no wonder I can’t sit still without dozing off.

Other symptoms I routinely experience are multiple mouth and nasal ulcers, scleritis (which feels irritating like pink eye, but the white part of my eye puffs up with fluid), rash and fever after sun exposure, muscle weakness and headaches.

So if I don’t write about lupus, and I don’t like to whine, why am I writing this?

Well, it’s been a difficult couple of weeks. And tonight I feel lousy. I guess I just want someone to know that I’m not a freak; that there really is something I’m battling here. Some people do know, but a lot of people don’t know that….

-If I cancel plans last minute, it’s usually because I just can’t muster the energy to go.

-If I don’t want to join you hiking in the sun, or go on an all-day shopping marathon, or help you move furniture, it’s not because I don’t want to be with you. It’s because I know I have to pace myself. One day of overdoing it can mean a week or more of misery. I’m too busy to lose any more days and weeks to this stupid disease.

-If I come across as a bit of a germophobe, well, I kinda am. Because my immune system is busy attacking my own body, it doesn’t always fight off invading germs very well. Normal illnesses can make me sicker than others and cause complications that other people won’t suffer. I’ve mentioned before how a respiratory infection several years ago led to an autoimmune muscle inflammation that took many months and physical therapy to recover from. I have four kids and I gamble a LOT when it comes to germs (i.e. teaching preschoolers at church, going to parks and other potentially germy places for kids, going to Uganda was a big ol’ totally-worth-it gamble!) but that is because I want to minimize how much this illness interferes with what’s important to my family.

-I appreciate — truly, I do — the concern and interest that’s behind all the tips and offers of various natural, herbal and otherwise “alternative cures” but…know that I’m a research junkie. I look up stuff all the time. If you propose something, I’m going to ask my doctor about it and look for reviews and talk to other people with lupus and find out what their experiences have been. I’m not being stubborn or stupid if I don’t try your supplement, shake, powder, oil, or diet. Some of those things can be dangerous for people with autoimmune disease and there’s a good reason that I’m distrustful of a lot of promised “cures.” (I tried an herbal energy supplement a couple of months ago that put me into a flare.)

-I never know when a flare is going to hit. I have identified some triggers, such as extreme mental/emotional stress, prolonged sun exposure, and strenuous exercise. But even these aren’t always 100% guaranteed tickets to Lupusville. It’s such a weird disease.

-Finally, I don’t always feel like this, thank the Good Lord above! I can go weeks, sometimes months, without any real symptoms. I don’t always know what’s going to trigger a flare, how long it will last, or how bad it will be, but when I’m feeling good, I try to make up for all the times I’m under the weather.

So, just keep this in mind: when I say I need a nap, when I say I’m in pain, when I quietly retreat, it’s probably lupus driving me to do so, and not anything you did or didn’t do.

(Unless you made me hike up a mountain, carrying your groceries, without any sunscreen and then maybe, just maybe, you’re at fault!)

Thanks for reading, for understanding, and for praying for me and everyone else who suffers from lupus.

 

 

Sundays

31Aug2014 Filed under: blah-blah-blog
Sunday

My home base is: east of Atlanta

Day to day I work as: a homeschooling mom, freelance writer, chief cook and bottle washer at The Apted Zoo

If I didn’t do this I would: have a little studio/office where I’d paint, craft and write for fun

Next year I will travel to: Uganda again, Lord willing

To me Sunday means: going to church, having a family dinner at the table, taking the kids to youth group and having a couple hours of alone time while they’re there

And I like to eat: at a Chinese buffet after church, but that only rarely happens

And I will get out of bed: at 8

And get dressed around: 10

And I will smile about: teaching Jonah’s children’s church class and getting hugs from his cute little buddies

And I just may daydream about: taking a long afternoon nap

And when Monday comes: I’m going to enjoy Labor Day off with my family!

IKEA Love

28Aug2014 Filed under: blah-blah-blog

 

Several weeks ago, I had the pleasure of attending the 2015 catalog release party at IKEA Atlanta.

IKEA Mama

My sidekick, Eli, came along, and all evening I was entertained by how much my 12-year-old loved everything he saw! (Note to IKEA: If you’re making a 12-year-old boy want to shop, you must be doing something right!)

Eli Collage

[He was trying to put on a frown for the camera, but couldn't hold it. LOL]

I was also amused by how much Eli loved the chicken satay skewers from the buffet, but I digress. (Two plates full, people. Two!)

It had been a while since I’d been to IKEA. Last time I went, it was a rainy afternoon and my sister and I whiled away a few hours, stopping for a yummy dinner of Swedish meatballs and mashed potatoes in the budget-priced restaurant. At the time, we were shopping mainly for rugs and kitchen gadgets, so we kind of breezed through many of the departments.

Well, at the catalog release party, we got to go on a guided tour of IKEA, and it was just awesome.

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[Why, yes, our hearts are pounding with excitement over this glimpse inside IKEA's dreamy closet systems!]

I spent a decent amount of time in each department and came home with several bits of knowledge that are going to take me back sooner than later:

  • They sell over 15 kinds of mattresses and most come with a 25-year warranty. So don’t believe those commercials that say you have to replace your mattress every eight years. If you buy an IKEA mattress and it fails to perform eight years in, just return it for a new one. (Check their site for details, and keep your receipts, obviously! The salesperson suggested scanning a copy to protect against register tape fading.)
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[Eli made it his mission to test every mattress until he found his bliss.]

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[Although I think he'd have happily slept on a pile of these ultra-soft bathmats.]

  • Everything is NOT all Scandinavian-modern-fabulous, like it used to be. And I really like that. Because these days, I’m more of a traditional girl when it comes to home design. Not everything at IKEA is austere and clean-lined. There are a ton of really pretty things to be found here.
IKEA Collage

[Click the pic to see the lovely floral detail on the must-have window screen, the classic chair design and the vintage cabinets.]

  • However, with a small 1970s bathroom ranking near the top of our remodel wish list, this modern sink cabinet is just what I’m looking for. It doesn’t project far from the wall, and those deep drawers are just what I need to store 4 kids’ worth of stuff!
  • Sign up for IKEA Family and get a free coffee or tea every time you shop, as well as deals emailed to your inbox. Oh, and we received a BOGO fro-yo coupon on our registration receipt, which we, of course, took advantage of.
Ikea11a
  • Finally, their Sparkling Pear Drink (Dryck Bubbel Paron) is the bomb-diggety. Even Eli, who isn’t a fruit-juice-lover, found a way to casually sneak himself a second glass.
FOT8DD8a

So if you’ve never been to IKEA, or haven’t been in a while, do yourself a favor and go! And to make it easier to shop for the things you love, enter this contest to win a $100 IKEA gift card!

a Rafflecopter giveaway

 

 

 

 

 

Grace in the Blame Game

19Aug2014 Filed under: blah-blah-blog

 

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Moms need to show one another a lot more grace than we do.

We look at a child behaving badly–whether two or sixteen–and immediately blame the mom for some deficiency that caused the behavior.

(It’s curious how we almost never point to Dad–it’s almost always Mom at the receiving end of those wagging fingers and tongues.)

One thing I’ve observed, that seems truer with every passing year, is this: kids, at a very early age, assert their independence, and they often choose to do it through misbehavior.

In addition, every single one of us are born with a free will to do as we please regardless of how we’ve been taught. Granted, some unruly kids haven’t been taught any better. But a lot of the ones who earn our disproving glances have been taught how to act. They just decide to do the opposite. Sometimes repeatedly.

I’ve also learned that some kids–thankfully, not many of them, but some–are like Teflon when it comes to punishment. The verse about the dog stubbornly returning to its vomit comes to mind. Every family I know that has three or more children has at least one Teflon kid and one pretty easy one. The others are usually somewhere in the middle of the extremes.

It’s all too effortless, when a mother has been blessed with an easy kid, to take credit for how well-behaved they are. To be all puffed-up with pride over how well that child is doing and kinda patting yourself on the back when no one is looking. (Or patting yourself on the back while everyone is looking, which is sometimes the case with social media.)

The truth I’m learning is this: your easy kid’s good behavior is probably not any more to your credit than your Teflon kid’s bad behavior is to your blame. He or she has a mind of their own, right? So, there ya go.

One of my greatest struggles throughout this life has been to stop playing The Blame Game. Honestly, I battle that judgmental tendency every single day.

And as a Christian, it’s hilarious, really, because if I “know” why someone is doing what they’re doing, then that is like positioning myself on the same plane of understanding as God.

I think He gets a giggle out of sending us life experiences to teach us that we, most definitely, are NOT Him.

I can almost hear Him laughing when I’m forced to realize that I don’t know squat about anything in my own life, much less someone else’s.

We sing in the Church about Amazing Grace, because truly, the whole concept of it is amazing. It produces amazing things: forgiveness, acceptance, patience.

Love.

I don’t know a single person in the world who sits outside of God’s grace, and if I’m gonna call myself His follower, then I have no right to cast another person outside the reach of my grace, either.

Especially not another mama, whose struggle is probably more like mine than either of us realize.

 

Fruit Salad, Yummy Yummy!

6Aug2014 Filed under: blah-blah-blog

One of the few things I love about summer is the abundance of fresh fruits and vegetables. We got a ton of strawberries and pluots (a yummy plum/apricot hybrid) at co-op yesterday, so I chopped some up, added a cubed apple, and couldn’t wait to dig into my fruit salad this morning. And I did not intend to share it.

fruit

Before you label me a terrible mother, listen: I know my kids. Violet doesn’t like pluots. Jonah probably wouldn’t, either, especially if unpeeled. They both like strawberries and apples, but Jonah prefers his apples peeled and I wanted the fiber.

I mean, honestly — sometimes Mama just wants to enjoy something the way SHE likes it, without having to share!

SO…I sit down with my bowl of yummy goodness and Jonah comes over and stares at it, longingly.

“I want that…”

Foiled, once again!

“OK, I can share. Go get a little bowl.”

He skips off to the kitchen and returns with a bowl and spoon.

“What’s that?” he asks as I scoop pieces into his dish, pointing to the ruby-red pluot.

“It’s like a plum. You should try it. It’s very sweet.”

I spoon the pluot in his dish, along with half a dozen pieces of apple and strawberry. He looks at his bowl, then mine, clearly sizing up the situation.

“OK. You can have THAT one,” and he points to his bowl!

“No!” I laugh. “The smaller one is yours! Eat it all and I’ll give you some more.”

So, he sits down beside me and, totally ignoring his spoon, picks up the chunk of pluot with his fingers and bites off a little chunk.

“MMM! Good!” (Yay, I think! Another fruit to add to his list of “likes”.)

Then he plunks the rest of it back into my dish. “I don’t want it.”

“What are these? Potatoes???” and he drops an apple chunk back into my bowl.

“No, silly! They’re apples. With the skin on. Just pick the skin off with your fingers if you don’t want the skin.”

“OK.”

A minute later, as seen below, he sprinkles a wad of apple peel into my bowl.

fruit2

“I don’t want these.”

(Do you see? Do you see WHY I didn’t just share to begin with?)

“Jo-NAH! OK, listen…you eat the pieces you want from your bowl, and just leave whatever you don’t want in it, m’kay?”

He tosses one more little fistful of apple chunks into my dish.

“I only want the strawberries.”

And this all happens five minutes after I showed him the container full of freshly washed and stemmed berries in the fridge. If all he wanted was strawberries, why didn’t he just grab one of those?

I guess because no Mama’s meal is complete without a large percentage of it coming in contact with little kid hands and/or mouths.

Sheesh.