OHKAYYY! I’m back to-day to explain to everyone my FABULOUS weight loss program! Here you go. Step One: Contract Systemic Lupus Erethmetous :Deadly Auto Immune Disease. Have it ravage your heart. Be able to use only 30% of it. Get a blood clot . THEN HAVE SAID auto immune disease attack your ENTIRE nervous system , where it does whacka doodle things like , cause your heart do 155 while you’re asleep, or cause you to have absolutely no appetite, or your stomach to revolt at the very sight of food. Or it might even make your brain say “Hey let’s just shut the lights out while this chick is standing up!” So you can’t drive , you can’ eat, you can’t exercise, you can’t do anything. You catch EVERY single thing that comes by until suddenly one day you wake up realizing that something has gone horribly, awfully wrong. I go to the doctor , and I have a whole body infection, SEE that’s what’s YA gotta DO is get a WHOLE BODY infection . IT eats up all your extra body fat. and there ya go ! When all you can stomach is banana baby food, and jello, and sip water through a straw . 50 pounds in two months , so gone, so fast, you hardly even know. But you know that your body is changed. You know you’ve been weak and down in ways that you had never imagined and never planned. Funniest thing is , when I was taking 100 milligrams of prednisone and bloated up like a whale everyone talked about how ill I looked. But now that I am wasting with infection , and losing weight so fast , everyone thinks I look so great . It’s funny. Apperances with lupus are so so, deceiving. So lupus is so not a way to lose weight. SO NO , NOT A WAY I RECOMMEND people to use as a diet. So please This is NOT a diet I recommend ! LOL.
My life has been a funny thing ,
it started out as just bout me,
I guess I thought that’s the way it should be.
Then something crept in on subtle wings,
on clawed feet ,
into my being.
It had a name ,
We could not speak,
this horrid beast.
My life had not meant to be,
just about me,
the pain so deep,
the tears that steeped.
For all around the world there sleeped,
hundreds, thousands, more.
This monster tore.
Its jagged teeth .
My words , you see,
I use to cleave and daily free,
MY thoughts from
lupus’ monstrous’ hands.
“NOT ALONE!!”,said I.
“FOREVER TOGETHER!!”, said we.
YEP. That’s what I said. I have AMAZONIC GORGONIA PURPLEITIS. It’s this horrible disease. Bizarre condition , really. Your own body does horrid things to itself. Like snacks on it’s own heart, or even your brain. You can lose your faculties. First mine decided to make my heart the main course , so I have 30% function of that. Then it decided my ENTIRE nervous system looked like a great after dinner snack. So it went amok through there. So my heart rate my go 155 with me lying completely still. Or it might tell my brain to just shut off while I’m standing up. “So you’ve been to the AMAZON ya say?” No actually it’s this buggery disease called Systemic Lupus Erethemetous , and hundreds of thousands of people suffer from it all over the world and there is NO CURE. But it seemed like everytime I told some one I had lupus there brain immediately went either somewhere else, their eyes glazed over, or they looked at me and went , “WHAHHHHAAT??” So I just decided for once I was going to call it something SUPER WEIRD and see what kind of reaction I got. Or if I started off with the symptoms instead of the name and said it in a super horrifying tone, would people be more interested, “AS in did you know LUPUS is actually the ZOMBIE of the disease world??” THAT might get their attention , as in we are literally the WALKING DEAD of the famous telly show? What we have affects more people in the world than you could ever imagine and practically NO ONE has heard of it. So I don’t know if we need to change our name, our image or what, but for today, I shall have AMAZONIC GORGONIA PURPLEITIS ……for the thrills, after all life is so short ,I take my fun where I find it 🙂
Why is it that parents don’t EVER REALLY tell you the “FUN” stuff that happens after you become a parent? They mention it in vague terms , such as “Just you wait.” or, if you happen to live in the South, “You are surely going to pay for your raisin’.” But never do they mention the specifics. Never do they mention that you shall be up for 20 hours nursing sick children while you yourself are so ill that your eyesight becomes so blurred there are two of everything,expecting lollypop toting munchkins to come singing from under the sink at any moment. Covered in several unmentionable substances, your hair in a scrunchy long lost it’s SCRUNCH. This was never mentioned anywhere in Dr.Spock or Dr. Sears, trust me, I’ve read them all. No where does it say anything about you wanting to sleep in the bathtub because it looks comfortable at 2 a.m. while one child is barfing into the sink, and the other is barfing into the toilet. ANNNNND, just when you think you’ve caught a break your husband comes home quivering like lime jello , (same consistency and color) , running a temp of 101.4 , saying a volcano is exploding out of my head, and oh by the way if I don’t make the bathroom now, there’ll be more of me on the floor for you to clean? NO ONE tells you these things at the altar, when you stand there all star spangled , breezing past the “in sickness and in health” line lah-de-dah …..My body now oozes down into the cracks of the sofa under the comforter waiting for the next wave of whatever the crap this is to hit , and as I pull the covers up over my head, I recite this mantra to myself , clicking my furry slippers together three times , “There’s no place like home, there’s no place like home…………….
Oh , I had forgotten how much fun it was to have sick kiddos when you are sick yourself. Remember when you were single, and you got sick, and you could just take your meds , and return to the glorious fluffy warmth of the bed that calls you from the bathroom after you’ve barfed your brains out? Remember how , when you DIDN’T have kids, and you just took THERA FLU , unplugged the phone, and shut off all the lights , that wonderful feeling of the darkness swallowing you up , and then waking up , about 14 hours later , thinking how fabulous it was to be nearly flu free? YEAH, ME either. I have kids . They have the flu. One of them is barfing all over the kitchen floor, while the other one is hollering at me, “Moooooom!!! Brother threw up on my favorite shoes!!” Did I mention I feel like crap too, cause I’m sick, after being up all night with said child, but I drag myself to clean up the vomit before the shihtzu gets to it, like a mid -morning snack. My head pounding like an AMTRAK ran over it in the night. My only wish , to be able to crash back down to the sofa, but now the other child is shrieking from the second bathroom, “MooooooM!!! I need clean underwear!!” ( Don’t EVEN ASK) Someone should be filming this I think to myself. They should film what I look like,(covered in barf!) what my house looks like,(Dogs run amok, and children hollering!) and DEFINITELY what this WHOLE experience is like,( my body aching, and head about to explode!) and show it to junior high students. It would be the world’s BEST form of birth control, let me tell you. Trust me, it would work.
Come into our house, relax, enjoy, converse. Don’t worry, our house doesn’t always look like this . Sometimes it’s even worse!
I’ve never been what you call the best housekeeper in the world. Now don’t get me wrong , my house is not “NASTY”. There is a difference between “NASTY” and “CLUTTERED”. We are cluttered. My friend Laura from my lupus page calls it CHAOS syndrome. Can’t Have Any OneOver Syndrome! She couldn’t be more right!! But somehow with my disease keeping the house Southern Living beautiful just fell WAAAAAAY down low on the totem pole of things that I was worried about. I tried to be concerned about it when I first got sick. I ran myself crazy , and ended up hollering at my children AND my husband, and turning myself into a person I didn’t like very much. Sure the house got clean, the floors were spotless, and all the laundry was done. But , I was this fried up shell of a thing. I wasn’t a Mom. I wasn’t a wife. I was ROBOcop of the cleaning force. “Did you drop this piece of cereal?!?” or “WHOSE CLOTHES ARE THESE IN THE FLOOR OF THE LIVING ROOM?!?!?” And the bad thing is , all that stress is SUPER BAD for my lupus. ANY small trigger of stress can cause a flare, and I was stressing over who left a Cocoa Puff on the counter?!? REALLY?? So something had to change. I couldn’t keep that pace up for sure. My husband and children couldn’t keep it up with me either, lol. So I had to decide DID I REALLY CARE that there were a few dirty clothes on the furniture? Was it really so AWFUL that the neighbors SAW a few unwashed dishes on the dining table when they dropped by? I finally decided that , “You know what ? NO. It’s really NOT that big of a deal.” And if they DID have something to say, were they REALLY my friends to begin with? Wouldn’t REAL friends have things to say like, “We realize you’ve been horribly ill, can we help with you housework somehow? ” So. I’ve decided that there are WAAAAY more important things in life. And that all this stuff will still be here when I feel better, and if I don’t feel better , than it’s probably not that important anyway. So think about it , if you’ve made non essential things, ESSENTIAL, maybe it’s time to rethink, re-do, just generally RE- ORGANIZE the way you have your cleaning schedule. After all , if it’s ONLY clutter and not NASTY, its really NOT that big of a deal compared to your health. So take your mental, physical and emotional health into account , and just LET IT GO. THREE of the most freeing words in the English language.
Well today is <3's day . You know the day everybody supposedly is supposed to celebrate their true loves with diamonds and chocolates and flowers. My husband and I are a bit of an odd couple I guess. We don't really DO Valentine's . I've always told people , "He shows me he loves me everyday, he doesn't need a holiday for an excuse." I do admit, he spoils me terribly. But not in the way that you would think. I guess I'm a bit odd too, in the fact that I'm not a jewelry person. I never have gotten people's fascination with diamonds. I've seen the shiny cases full of every type of ring, bracelet, bead and bauble. They glitter, and drive some of my girlfriends into the craziest state , causing them to say things to or about their husband like , "He'd better bring home jewelry , if he knows what's good for him. " Or , "I expect a ring at least!" all said in a serious manner. But, I mean they're ROCKS , people! They come up out of the ground just like any other kind of rock. Sure , they're polished up to look all gorgeous, but it's STILL just a ROCK. So I'm not a blingy girl. So does he bring me flowers ? Dozens of bouquets of velvety cut roses? No. I'm not really into that either. If he WERE going to buy me a rose, I'd prefer a live one you could plant in the yard and see bloom every year. But no, that's not how he spoils me. So what do I get from hubs that I think is better than the most expensive tiny thing in that famous turquoise box? After all , all that glitters is NOT gold. Treasure for me is found someplace else entirely. Books. I got BOOKS. Two fat hardbacks and a paperback. When I found them and said , "I can't choose! Should I get the Clive Cussler or the new Star Wars novel?" He said , "Why choose? ?" So don't turn me loose in Tiffany's or Xales . Give me Books a Million or the book aisle in Wal Mart , cause I think a 400 page novel beats a diamond bracelet any day of the week.
I have kind of a weird habit. Well, I mean there are those who know me who would say I have more than one, 🙂 but anyway . TODAY’s particular weird habit that I’m talking about is , I like to color. I’ve always been an artist, the smell of paper my aphrodisiac. Paints, pencils, charcoals, pastels, give me anything to make a mark on a blank space and I’m in heaven. But there is just something about Crayola crayons . That certain yellow and green of the box. The hefty feel of box in my hands when I got a new set. The excitement of opening them. That overwhelming odor of the newness of them. I’ve just always enjoyed getting a new coloring book , ripe for filling with my idea of the way the characters in them should look. The blankness of the princesses or flowers bringing all my creativity to the forefront of my brain. And imagine my surprise when I found out there was a company called http://store.doverpublications.com where you could order coloring books with such detailed pictures in them they looked like art you could hang on the wall! I practically drooled! There is just something so relaxing about picking out the right colors and filling in the spaces. Making it look just exactly so. It takes your mind and even your body away from whatever troubles you . It’s helped me through many, many hours with my chronic illness. If you ever feel stressed, here’s a thought, just buy yourself a couple of coloring books, a large box of Crayola crayons and sit down in a quiet place. It’s the cheapest therapy you will ever buy! P.S. The one at the top is a nice one to print and start with I think. ❤
You know how I posted yesterday that it was cold and grey? Well I guess that was just a herald. We had a horrible ice storm. We had two whole days without power. We live in a small wood frame house , and luckily my husband is a follower of the old ways, something of a frontiersman if you will. He grew up where a lot of the time if you didn’t hunt , you didn’t eat. Everyone had wood heat, and kerosene lanterns. He’s taught my sons the same . When the ice hit the transformers, it caught them afire and shot down the power lines blowing them all the way down our line. Trees had gotten heavy with ice, and broken and fallen all down our road. We didn’t panic. We had our wood stove and a nice stack of seasoned wood , and brought out the lanterns . We all gathered in the living room and got out our books and spent time reading our favorite passages to one another, and discussing them. Laughing , and just talking about our best times as a family ,warm from the stove, and under the glow of the lamp. So quiet except for our own voices , the boys fell asleep against their Daddy’s shoulders, on the big sofa, when the daylight faded. No electronics to keep you awake past chicken roosting time. The power company had promised that we would have electricity by the morning, but we didn’t . All of the food in the refrigerator was beginning to spoil, so I told the boys not to eat any of it.They were hungry . They wanted to know if they could go out hunting and I said yes. Dressed up warm , they took out their guns, and youngest son brought back a wild bird, to cook on the wood stove. We live in the “boonies” so they had only to stand in the back of our yard within my sight to shoot it. Their Daddy has taught them well , they cleaned , skinned and gutted the bird all by themselves, quartered, floured, seasoned and fried it. I know this seems like something so non essential in this tech filled world. Why do kids need to know how to do something like that? Like build a fire outside? Start a fire in a wood stove? Kill an animal, skin, gut, cook and eat it? Why do they need to know how to find worms, and make a cane pole and fish? I would pray it never came to the world being in such a place where those skills were all they had. But I also would be remiss to think that the world could NEVER become a place where it would not be needed. I must admit I was so very proud of them to take the initiative to do that, on their own. And the pride in their eyes that they had provided lunch for me today was beyond measure. And let me tell you, wild bird by kerosene lantern prepared by young hands is a meal worthy of any gourmet, and I was, am , blessed.
It’s so rainy , grey and cold here today. The boys got up feeling under the weather , grey and cold too. They grabbed their big soft comforters and and rolled themselves up like hedgehogs on the sofa with me. Not long after the dogs decided that we looked warm and comfy also. I am left with a tiny corner perched with my laptop . It is so very quiet. Only the sound of the rain on the tin roof, and two little ( not really so little anymore) boys breathing,soft as fairies’ breath, interspersed with a tiny dogs snores. The boys are 15 and 13 now and I can’t help but think , I must grab this moment to myself . For how much longer will they lay with me on the sofa in the mornings? Bittersweet, and magical , two dark heads, once both tiny enough to lay on my breast at the same time , now hang off the sofa , at all angles. They still hug me , and give kisses. And aren’t so absorbed with girls that I am a side note already. I know it is coming.
I see the glances my 15 year old gives the sweet young things at church. They smile at him with that look that only a teenage girl can have. Knowing . Even if I weren’t his mother , I would know he were handsome. Raven-haired and crystal green eyes , with just the right amount of cleft in his chin. And oh, his smile. But he doesn’t know he attracts them. He sees only friends who “happen” to be girls. I smile to myself.
My 13 year old , curls of black, with eyes so blue you could touch the ocean in them, finds solace in quiet places . He is not a social butterfly, and wishes nothing more than for girls to be on another planet somewhere at this point in his life. But they secretly smile for him too. They see that he is shy, so they don’t invade his space , but they watch him from afar , and whisper behind their hands to one another. The rumors get back to me. I gently tease him , and he rolls those beautiful eyes at me.
But this morning I shall soak up every precious , beautiful moment , while they are here, and belong wholly to me. Even though as I lay here typing , my legs are totally asleep from the combined weight of boy and dog . I have never had a happier moment.