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 🙂
Have you ever had someone make you so angry , that you were struck with laughter? I mean literally ? You laughed? That the person could be so absolutely so gobsmackingly stupid as to say something so baldfacedly in-your-face that all you could do was to laugh? I have , and just today. And the problem was it was my teenage son that said it. I mean don’t get me wrong , I love my boys, and they are good boys. Just about 99.99 % of the time. But every now and again one or the other of them says something that you are just struck either completely dumb, struck with laughter, or with the absolute desire to run screaming for the hills. I know completely that my mother stood over a cauldron with herbs and a little stirring stick and said the words to curse me, for I have a child who is the spitting image of meself. In face, in body language, in compassion , (people tell me, not I, in heart also ) , oh but also , also , in that wee bit of rebellion that rises up and says ” Make ME. Just MAKE ME” And let me tell me you if it had not been for my dear old Dad , I swear I would not speak with a full set of teeth now, for I was twice the handful he is , I assure you. My mother earned every one of her beautiful grey hairs. I know I will make it through these times for they are 13 and 15 and we have not far to go, but whew. This morning I was tempted to run to my mother’s just up the hill and beg forgiveness for every gobsmacking thing I had ever said or done , and beg her to reverse the curse, but then I thought , “No , this is my due penance, and she is deserving of watching me pay it. ” Then I thought I shall go to the kitchen and get out a own cauldron this eve, and say some things of my own.
An old block building stands there among the pines. Just off the road. Just next to a little old country church. Painted white, with red gingham curtains , it sits quietly most days. You’d pass by it and think , well that doesn’t seem like much. You’d be wrong. It ‘s seen weddings, baby showers, dinners for passings of loved ones. Family reunions, Ladies club meetings, political get togethers and just general gee hawings. Today it saw the Spanhanks Family reunion . It’s been a long time since we’d all gotten together. For some of us it’d been years since we’d seen each other. Hugs were given , people reintroduced, babies kissed, food eaten , lies told , and laughter heard and rung out in the hall. The old piano that has sat so long in the corner , you could almost tell it was glad again to hear the voices of people in the room. Granny Jo , our matriarch was in her element today , making sure everybody had food. “Did ya get ya somethin’ ta drink” “There’s plenty more puddin’ over there!” Uncle Charles has finished up his dinner and has got his toothpick outta his hat and is chewin’ whilst tellin’ a tall tale of some sort. Uncle Ray has got his hands full of grandbaby while trying to eat at the same time, but if anyone can handle that , he can , he has has plenty of grandbabies to practice on. Things get quiet for a while, ’cause it’s hard to eat with your mouth full ya’ know. But it picks back up again when people head back for dessert. There’s coconut pie, and pumpkin, and 7-up cake which Granny makes every time. I tell ya’, if you left here hungry , it was your own fault. People start to round up, and head out to get a dip a’ snuff, or smoke them a little bit of a cig. The kids want to run off all the pie and caffeine they consumed. The ladies start to clean the kitchen up a little, and you can hear the old Sweet Home Community Building smile, because it knows, it matters after all.
Ohhhhh, I could get in serious deep water with this Plinky prompt. The prompt today is , Write about a time you acted first and thought later, giving into your impulses. Heh. WHICH time?!? I am like this all the time. Just ask anyone. If you've known me for more than five minutes, or read more than one or two of my blog posts, you've probably gotten the handle on the fact that , while I MEAN well, sometimes my mouth and my brain do NOT necessarily cooperate as a cohesive team. In other words, I 'm a lot of fun, but I suffer from foot -in – the- mouth- disease. A lot. My husband just looks at me sometimes and shakes his head. He has at times looked at me and said, " I can't believe you actually said / did that. I swear, I'm an adult. I'm 34 , and I've managed to never do anything illegal, immoral, or really, really stupid. (Honest!) I just don't have that filter between my brain and my mouth. I know my parents must have thought when I was growing up , Dear Lord , help us, what are we going to DO with her?!? ( My Dad's bald now, by the way, and my husband DIDN'T have gray hair, but now does…..) I dunno, I guess, maybe I'll mellow with age? Or maybe I'll be THAT lady. You know who I mean, that 80 year old lady that they say, "Watch her, you never know what she's going to say!"
Well, I’m behind. Again. Ugh. I can not seem to get myself together these last few days. I missed two days here, but did get the kitchen cleaned. I didn’t get the laundry done, but I did get a lot of rest this week. So , I got SOME stuff done, just not ALL the stuff done that I wanted to. But so it goes, I guess.
I do miss writing here when I skip it, though. I don’t know how people write for a living . I am reading Sylvia Plath’s Letters Home, where she explains to her mother that she intends to write 1,500 words every day , regardless. I suppose writing might just be like anything else, and the more we practice it, the better we will get. I understand what people mean when they say writer’s block, because my inspiration has been sorely lacking these last couple of weeks. Maybe it’s lack of quality rest, or just feeling bad in general. Who knows? Anywho, that’s all that’s new in this neck of the woods. I ‘m off to rest my “brain” in hopes that inspiration will strike! Have a great day everyone! 🙂
I never really thought too much about what makes me stand out. I like trying to figure out what makes others stand out, or makes them the people that they are. It seems kind of arrogant or self-centered to think about self in such a way, but, I guess it takes a certain amount of arrogance to be a blogger , if you think about it. I mean really, you write and post under the assumption that people are going to read it, or that they care somehow. I really did not start my blog with this assumption, my thoughts were more, “This is for me, so years down the road , I can look at it, and say, ‘Here’s how far I’ve come.’ or maybe even ‘Here’s how far down I’ve gone’., lol ! ” But I guess for some people maybe they hope to be famous, or start a blogging empire, complete with a “brand” of their name on a product or something. I would totally not even dare to assume such a thing about myself! 🙂 But , I guess if maybe I look at myself through the eyes of others, I might could guess what makes me stand out…….I’ll give it a go, anyways…
Things That Make Me Stand Out~
1. I CAN”T dance. I have no moves. Not even like Jagger. You know what I mean, that whole geeky, moves, but no moves type style. Don’t ask. It ain’t happenin’.
2. I am a complete and total dork. I LOVE to read, draw, watch old movies and British telly. I like beat up Converse sneakers, hoodies, vintage tees, am blind without my specs, and anything else you could even vaguely describe as belonging in the land of the nerdy.
3. I really, truly, deeply care about other people’s problems. I suppose that might be construed as slightly egotistical, but it is nonetheless true. I honestly am interested in what’s happening in your life. I don’t mind if it’s good, bad, ugly or indifferent, if it is important to you, I care about it.
4. I like to laugh. I don’t mean a little snicker, heehee, behind a hand so as not to draw too much attention. I mean , I like to guffaw , hoot, snort, complete-body-rollicking -in – the – aisle laugh. A lot.
And finally, I am slightly suspicious that the quality that makes me stand out the most is………….
5. I’m totally normal. Vanilla. Possibly to the point of boredom. So, really the thing that makes me stand out, is , “I don’t .”
Lupus is a severe auto immune disease characterized by inflammation of various parts of the body. I was diagnosed at age 18, after being very ill since age 14. I’ve learned a lot about this disease in the 15 plus years I’ve been battling. Here are a few things I wish I could share with everyone , everywhere!
1. The tired I feel with Lupus is NOT the tired that a good night ‘s sleep will remedy. This is the tired of the flu, or a virus complicated with a cold complicated by running a marathon complicated by being run over by a truck, if that makes sense. THAT kind of tired.
2. There is no such thing as a good night ‘s sleep with lupus. Yes, they will give you sleep meds. Yes, you do eventually pass out from exhaustion. But it is not the same thing as a regular sleep when you are healthy.
3. The pain of lupus is not like pain from a regular injury or sickness. Did you ever get a really bad sunburn? Hurts like the devil, doesn’t it? Ok. Now imagine that on your whole body, right down to your very bones? Not pretty, huh?
4. Medicine sucks! Yes, it is helping to keep me alive. But, it’s chemo. Or organ destroying medication. Or enough steroids to kill a moose. My hair is falling out, I’ve gained 100 pounds in 5 years, and I’ve got enough mood swings for a whole bus load of women with PMS.
5. You can ask me questions! You don’t have to tippy toe around it. I’ll shout it for the whole world to hear! Lupus is the pits! Ask me anything you want to know! I don’t bite. (Much) 🙂
6. And finally , the last thing I wish I could tell everyone, everywhere. I don’t need your pity. I accept my life for exactly how it is. I’m not feeling sorry for myself. Life is worth living no matter the cost. I am still blessed. I have family who love me. I have my sense of humor! The sun still rises. These things still ring true. And if I were not to wake up tomorrow, I would hope that those who knew me best , would know that they would eventually smile again. Lupus is the pits. But I choose to smile , anyway!