About Me~, Uncategorized, Writing

Scrambled~

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Ferris wheels. I used to really , really love Ferris wheels. And roller coasters. I loved the up and down craziness of riding The Scrambler. The Flying Swings. Amusement parks were a ball, and I couldn’t wait to go every year with my Daddy to the company picnic to the big park and ride with him . I went with my friend James and tried to get him to go on the double looped Arkansas Twister with me, but he just stood on the ground firmly  in his wore out cowboy boots and swore that ‘s where he’d stay with his eyes closed , and pray until I was back on the ground  where I belonged .  I used to love to go to Hot Springs , Arkansas and ride the elevator up  Mountain Tower and stand 216 feet above the Ouachitas and look out over the heights and feel thrilled.

But then one day, I got very  sick. I had been pregnant, and I lost the baby . We found out it was because I had lupus .  My body turned into this alien thing that I didn’t recognize. It BECAME a Ferris wheel I couldn’t get off of. Around and around I went. I was on The Scrambler, screaming for the operator to let me off. I’m on the Arkansas Twister , but I’m stuck in between the loops, where there’s no solid ground for me to get back to. I know James is praying for me  somewhere, but I can’t get down again. The elevator refuses to take me off the Tower anymore. It’s been a long time since this horror park first started . I had a few years where I was lucky , and had a period of remission. Those were glorious times.

But the roller coaster has started back up again . I’ve had to go back on the steroids , the anti malarials, the high level Vitamin D, the major pain killers , and spent most of this week in either a state of insane insomnia, crazy fatigue, with my mouth covered in burn-like ulcers, my stomach in  toe-nail churning nausea, or  my body bent over in mind-blowing joint pain .

I no longer go to the “real” amusement park. I don’t find anything amusing in that anymore. My body is “Scrambled” enough. I am starting up the Mountain again, with a new rheumatologist. The one plus is , I really like this one, she seems to be really educated, and very compassionate. I can only pray that the view from the top of the Tower is worth this particular  ride in the elevator .

About Me~, Poetry, Uncategorized, Writing

Discarded Treasures ~

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I approached quietly , and left

a small piece of my heart,

on the  park  bench.

As if somehow leaving it there,

meant I was waiting for the day , no , not even the day,

my life!

to start,

for some permission.

Would he see it?

Would he care?

Or would it simply be one more

discarded, tumbled, forgotten grubby lost unknown treasure. I watch with all the hopes , despairs, confusions, joys, consternation…………. Abruptly  , the man who lives in the apartment above me  grabs my arm , and with  sudden fervor

pulls me down from my window perch , where I watch so anxiously . Racing , with a strength I would not , no , could not have thought his own bird-like body could possess,  hurriedly we go, skipping first one step , and then two steps at a time ………..and then we are there.

The bench.

The boy.

And me, the  girl. I am standing , out of breath, trying to think of the words to explain .

The painted rock.

The old man.

I am only a child  here.

My words are jumbled.

There is  nothing  for me to  say, it is  just a grubby , lost unknown treasure, I mumble.

It is okay, the boy  says. The old man is his uncle. The boy  is NOT new here, the old man says,  he has  seen that you like books, and walks. And benches. And wanting  to learn about quiet things, like that which is  discarded, and hopes, and unknown treasures. And  in time, together , you   will  think of the right words to explain.

About Me~, Uncategorized, Writing

One for Our Column~

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Yesterday was such a lovely day . I woke early and the world woke  with me , with  all the hints  that everything good might happen. My body even tempted me with promises of less joint pain, and energy enough to take a small walk down our lane into the sun-tinged air. The wee red fox who calls our farm home greeted me shyly on my way back as if to say, “Happy to see you out today! ” The birds went about their daylight  business looking for their breakfasts and for one golden moment I had a dawn  that reminded me of what my life had been like so many years ago. I did laundry, straightened my kitchen, and walked barefoot through my tomato patch as I had  done so many times as a tomboyish 10 year old , and my Grandpa was one row over again urging me , “Make sure you get them tommytoes off the bottom vines  there, PeeWee!” . I wish I could have captured that moment in  a mason jar, as we used to do the fireflies , to open today , for sometime in the middle of the night ; the tordol, dexemethesone combo wore off, and the lupus pain came rushing back in , with all the fury of a caged beast  , seemingly  all the more angry for having been denied its one day. I want to say I’d never had that one moment , that one day, but if I did  I’d be lying. If we are all honest with ourselves, we would trade a hundred days , a thousand days , and we HAVE traded them, to get that ONE . That ONE magical day that brings back those gilt-lit days of joy, laughter, memories, barefoot -garden days, sun-warmed beach days, child-filled swing -in-the-park -days, those days where we shake our fists at lupus, at chemo, at whatever has stolen our glitter from our lives, and say , “YOU DIDN’T GET THIS ONE!! THIS ONE BELONGED TO ME!!”  , just so we can  put a chalk-mark in OUR column , no matter how small, and continue on.

About Me~, Uncategorized, Writing

Wings~

 

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Happiest of Tuesdays to you EveryBUDDY! I hope today finds you doing the best you can with what you have. Sometimes that’s all we can do. The best that we can. Sometimes not even that. Sometimes we can’t even give it our all. There are days we can only give it our “some”. And the perfectionist in me is learning to be okay with that. I am very blessed in that I married a man who is perfectly okay if the house is not spotless every day. I do NOT have to look like a supermodel when I roll out of the bed in the mornings. ( Thank the Good Lord above. ) He met me when I was already very ill , and married me anyway. Needless to say it pretty much all went downhill from there. If angels walk among us, I’m pretty sure he hides his under his grease stained overalls. I read  very frequently a question that gets asked on my lupus page, from many of my followers, who are just beginning their journeys with this insidious disease, the question I most dread hearing. “Does it get better?” They can usually mean a few things by this. Sometimes they mean the treatment they receive from friends and family members. As in , “Does the treatment from them get better? Will they understand? Will they be more compassionate and helpful?” I wish I could say yes. But mostly , sadly, the answer is “No.” People , in large part, don’t “Get it” unless they GET IT , and that is something we don’t really wish on anyone. Sometimes they mean , “Will my illness get better?” And the answer to that is a resounding “No. ” as well. Oh how I wish I could say, “Oh yes! The doctors are so helpful. The treatments are wonderful. And the support is great. You’ll be back to yourself in no time. ” But it’s just not true. The best I can wish for them is a period of “remission” a short respite of ease . Now for those of you reading this thinking, “Well aren’t you being a Debbie Downer today??” I don’t mean it to be! I really mean it to be positive, so that when you see someone WITH a disease like we have , you will TRULY understand how HARD we fight to STAY positive. We must make up our own minds EVERY SINGLE DAY that we are going to live to see above the trees.  EVERY minute to smile through horrible pain. Our bodies literally hate us. And no amount of King’s Men can put our Humpty Dumpty’s back together again. So we must make the best go of it that we can, and oil our flying machines.  If we seem triumphant over some small thing, please remember that maybe even walking down the hall to our bedroom was like a 10K . Standing long enough to cook spaghetti was like a marathon. Taking one of our meds off our list , is relative to soaring over  Everest. These are the measures we count our lives by. So please. Don’t take offense if we don’t seem like “our old selves”. It’s been a long , long time since some of us even remember what that was like. Smile with us in the now. You don’t have to “HAVE IT ” to “GET IT”   🙂  Our bodies might seem to  be falling apart, but our spirits are still the same on the inside.  The wings might be bent, but not broken, at least, not for long. Come fly with us.

About Me~, Writing

Fortune Favors the Prepared~

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In searching for inspiration for writing this series on lupus awareness month, I’ve thought back to many of the things that I have experienced, and many of the things I have learned that have helped me cope.  I suppose that is really one of the things that I have to be most grateful for, lupus has taught me more in my 36 short years , than some people would ever learn in a lifetime!  

  Today’s tip has to do with hospital trips.  As lupies, we unfortunately have more than our share of doctor and hospital visits. Since I was young I’ve been hospitalized every year , at least once. Most years , many more times. A lot of the time it would be a rush job, and we would leave the house  snatching this, socks, toothbrushes, extra underwear,  items flying through the air in hopes that they would reach the suitcase as we ran for the van , and out the door.  Finally , after lots of visits where we ended up with no pajamas, or shampoo, we decided we’d start packing me a “just-in-case-bag” . You know , (Just in case I have to hurry to the hospital!) .   😀  

  Now everyone’s just-in-case bag will be different, depending on what YOU need when you go, but here is a typical list of the things I pack:

Things to Pack Just in Case 

1. One extra set of clothes for each day you plan to be gone , five is good ( if you’re like me , you DON’T want to live in the heinie -showing hospital gowns)

2. In gallon zip-loc bags ,roll  your underclothes and socks for each day( I like fuzzy character socks!)

3. A toiletries bag with your favorite shampoo and bar soap ( cause let’s face it, hospital brand soaps SUUUUUCK!)

4.  One word  – DEODORANT – ‘ NUFF SAID.

5.  A really, really, really, REALLY comfortable nightgown.  This is in addition to the clothes outlined in line 1. 

THIS is for sleeping.  The I’ve had-thirty-different-kinds-of-blood-tests-sleeping.  

6.  Breath mints, gum, jolly ranchers, blow-pops, ANYTHING to keep your mouth from feeling like the Sahara. 

7. HAIR STUFF–  Yes, I said, “stuff”.  A hair brush, gel, a comb, bobby pins, an elastic band, hairspray, whatever you need to tame your hair into some semblance of normal and NOT the Creature from the Black Lagoon, trust me, you will be GLAD you did this.

8. Chap-Stick-  or Blistex or Carmex or whatever you use to slather on your lips, heed me when I say……..”BRIIIIIIIIIIIIINNNNNNG IIIIIIIT”   your lips will be eternally grateful, I promise. 

9.  Art paper,  pencils   or   a   book to read,   and yeeeees, I know, people have tablets now  (don’t get ahead of me!) for that kind of thing,  but there is just something soothing about the feel of REAL paper!

and last but not least……

10.  Your tablet.   For messaging, checking your e mail,  instant messaging,  and yes even keeping thousands of books on your Kindle app, it’s hard to beat Amazon.  

So I hopefully this will give you some ideas to pack up your bag , BEFORE your next rush-job hospital visit! Love you guys!

  So there ya’ go, my go – to list   of    must-have   things  for hospital visits .   I hope you guys find it helpful.  But hopefully , NOT  in the near future, ya’ know…………………lol       😀         

About Me~, Uncategorized

48~

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He moves a little slower now. But hard work will do that to a man. His joints creak now when he gets out of our double bed. But he has sinew on his arms, like rope stretched round an old post many times over. Losing none of its strength simply looking a little more worn. Hands that I’ve seen lift a 100 pound sack of feed as if it were a plaything, and yet wet a cloth to wash my face while I’m ill with the delicate ease of a doctor. You see the cowboy stars on television who perform seeming impossible shots with their western rifles. I’ve seen him fire a bullet hole in a bullet hole from a place so far away I couldn’t even see the cross mark. A man we know carries the target in his wallet , that my husband once shot as proof that he knows a man who can shoot ” a hole into a hole.” I’ve dreamed a dream up in my mind and said , ” If I wanted a shelf that looked like this and went here in this space, would you build it for me?” . And out of spare wood from the yard, and his pure imagination , he can build it, and stain it and make it a work of art. His boys think he is the strongest, tallest , smartest, best Daddy in the world. And why not? He’s taught them how to catch a fish with just a string, a hook, and a worm. How to walk tall in a world full of people who tell them differently. They know how to shake hands with a man when saying hello, and how to open a door for a lady. He’s taught them how to skip rocks, crack a Bible, kneel in prayer, and if need be, how to throw a punch. He’s told them you always love your Lord, your Momma, and your neighbor, and IN that order. I first laid eyes on him when I was 16, and told my friend, I’m gonna’ marry that man, and I did. He has been my light on some very, very dark nights, given me two amazing children, been my laughter when I am down, my lover, my strength on some days when I thought I didn’t want to go on anymore, and always, always, my BEST FRIEND. Today he is 48 , and I love him more now than I did that September day when I first saw him across the churchyard. Happy birthday babe, you are my everything.

About Me~, Uncategorized

A Butterfly to a Wolf Fight~

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I’ve been having a lot of interesting conversations lately on some of my lupus pages. Our current thread of conversations started with rashes. (Having a chronic illness leads to some weird conversation threads….) See the name lupus is generally thought to have originally come from the 13th century and stemmed from the red rash it leaves on the sufferer’s face , which some physicians seemed to think looked like the bite of a wolf. Now in this day and age of political correctness we refer to it as the “butterfly” rash so as not to offend anyone.( Another term for the rash, the medical one, is malar rash.) Well, we talked about butterflies for a while, and some of us do get the butterfly rash, and some of us don’t. ( I do.) But one of my friends, new to the lupie world, asked a very good question. She wanted to know , how come so many of us post butterflies for our support and conversation pages, when our disease is named for the wolf? I guess it kind of took me aback. I know the reasons we post the butterflies. They represent change, as in constant change of the disease we are fighting every day. They represent strength, the strength it takes to struggle and emerge from their cocoons in order to fly. The fact that though their wings look quite delicate , but are actually a lot stronger than they seem. And of course , they’re pretty. They also represent new life and hope in many faiths and religions. But then I began to wonder if maybe we hadn’t given the wolf a bad rap. I myself have had such a severe case of lupus that thinking of the wolf as my friend has not been necessarily my first thought in this fight. But perhaps I’ve had one of my best players “on the bench” .Maybe I’d been bringing a butterfly to a wolf fight so to speak. Wolves are scary looking animals. I mean they’re huge for one thing! , weighing anywhere from 80 to 140 pounds. They are fierce hunters , known in packs to take down even the North American bison. So if you think about having a disease named for something so aggressive , that can be pretty intimidating! But then I decided to do a little more research on it. I said to myself if I can use the wings of the butterfly to my advantage in my psychological war, I’m going to get some of this lupus vulgaris fierceness for myself too! Wolves as symbols are part of many cultures from all over the globe , but I suppose the most notable of them are the North American Native peoples. Just reading through the stacks and stacks of information on their histories could take a lifetime to learn about their amazing stories, but some of the ones that stood out to me the most were the ones that talk of the wolf as standing for “teacher”, “guide” , “strength” , “unafraid in the face of death” ,but also possessed of deep faith and profound understanding. I was very surprised. I think maybe people see the images of the wolf devouring its prey and think only of their bodies being consumed by this hideous alien disease. After doing all my reading today, I’ve decided to fly into battle on my butterfly’s wings but with a pack of wolves for backup. I think I can use some more teachers, guides,and warriors with strength unafraid in the face of death. Not just fierce hunters but possessed of faith and understanding too. Cause after all, when you’re fighting for your life, why leave your biggest, scariest looking soldiers at home?