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~, 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~, Uncategorized, world affairs, Writing

Carry it with you when you go………

 

 

10392064_1026918694047470_4501905245649217180_n (1)Did you just ever have one of those months where it all seemed to pile up on you ? The news , the negativity , the gossip, the baleful oil of the sheer sliminess piling up in wave upon wave until it  just seems determined to pull you under the weight of it? That’s what it seemed like this last month. So much so that I turned off my FB , my Twitter, my blog, and all my communications. That’s not all that new of a step for me. I have been known to go off-grid for as long as two years without even a television. When my husband and I got married we owned no computer, no television, no telephone, no washer or dryer, and lived 10 miles from the largest chain store. Lest you think I was some sort of a hermit, I worked at a library, had lots of friends, enjoyed chatting  with certain people, and not just with “conspiracy nuts”. But anywho, I digress. It’s 2016 now, and apparently in this century it’s  considered en vogue to have  a certain number of such  kooky friends. There however seems to be a pallor hanging over the universe these days. If you so  much as even dare to breathe a smile in someone’s direction it is deemed a hostile action. I ventured forth into town to do my weekly shopping and it was as if I had forayed into a war zone. “How dare I smile in the general area of the shoppers in the aisle I was on?!?” It was as if I had thrown poison darts in the path of their cart! “What right had I to be happy?!? What reason had I to be so cheerful in the store for crying out loud?” HMMPPH! It was unseemingly.  I don’t know why it bothers me so badly . Why do I want so much for the world to be a positive place?  Sometimes I swear it is a losing battle, and I wonder if people have made it their own personal mission to dampen as many people’s moods as possible while out and about on their daily jaunt. Well, I hereby declare that I REFUSE TO LOSE! THAT’S RIGHT, YOU HEARD IT HERE  FIRST! I am making it my own personal mission to get a smile from each person I pass. You will not dampen my mood. You will not rain on my parade, and you will not squash my happiness. So, if you take offense at my smile, I feel genuinely sorry for you. I hate that you are having a bad day, and I hate that things are not working out well for you. But I am going to smile just the same. That is my philosophy for today, my philosophy for tomorrow and for all the tomorrows from now on! So hopefully I am leaving you with a little bit of my smile for today, and maybe you can carry it with you for the rest of today !

About Me~, Uncategorized

Blah, Blah, Blah, Blah, Blah………

 

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Ha! You know those Charlie Brown voices that the adults make? For some very random reason I suddenly just thought of that. Pardon me , while my brain has some sort of extreme rollercoaster moment apparently. Heh. I do that. And I normally just spit out what I’m thinking  too. Which is sometimes funny, and occasionally horrifying, depending on where and when you are. Say if you’re in your neurologist’s office, you can cause people to move several seats down from you. Bwahaha. Oh STAHHHP. I ‘m not in the neuro’s NOW!! I’m at home. I’ve had a really kind of weird week . Well, I don’t know if it’s actually all that out of the norm for me, or if I’ve just noticed it more that the children are gone for camp. I got out of the house ( that sounded like someone holds me prisoner…….help!)    🙂     meaning, I had enough oomph to take some small walks up the lane by the house for exercise , which felt fantastic! Early enough in the morning where the heat didn’t drop me dead. Which was also great. Boys weren’t home so no loads of dirty dishes or clothes . Also big wins in the plus columns! Didn’t have to cook so hubs took me out . Even went to a new restaurant at the lake with an awesome  view where we’d never been! So of course, me feeling cheeky , what did I do, I overdid. I did, I went and overdid, and for my efforts ended up with a fantastically lovely aural migraine last night. Oh yeah. The flashing lights, the nausea, blind in one eye, near seizure level.  But do you want to know what I meant when I said I had kind of weird week? I could feel it working up to it. That’s the bizarre part. You know the poem I wrote for my blog yesterday? Anytime I am about to have a seizure, or any type of big neurological event, I can write poetry, I can write on my blog, I can paint, I can draw, be creative for a certain period of time. And then afterwards I’ll be exhausted. You can feel it coming,  and there’s nothing you can do to stop it, and of course it’s worse since the stroke so  I’m taking all the meds the doctors say to take.  I suppose there’s nothing left to do for it. Anywho. Feeling very tired today after all that . Slept for about four hours total yesterday. Completely wiped now. Just wanted to check in with all my peeps. This was really too long to write on my lupus page so wanted to post it here for everyone. Oh, and if no one has said it today, I LOVE YOU!! with all my ❤ and 🙂 and as always ((HUGS)) ~ RUBY J.

About Me~, Uncategorized, world affairs, Writing

I Ain’t Never Read Where It Says THAT….

You know I’ve got to thinkin’ about somethin’ over the last couple o’ days. ( People shakin’ their heads already, I hear yore marbles rollin’. Lord help us yore a’ thinkin!) Well, you know , I DO GET to thinkin’ occasionally. AND I got to thinkin’ about that sayin’ , “Well, I’m happy if you’re happy. ” And it occurred to me, I think that might be just about the single biggest load of rot I’ve ever heard in one sentence. Well, seriously. Think about it. Think about a time YOU , yourself have ever used that phrase . Was it ever in a situation when you were ever GENUINELY happy for said person? It wasn’t was it? It was more of a, “Lord have mercy, how did they get into that mess, I am just going to shake my head and say, ‘Well, I’m happy , if you’re happy.” But WHY?!? Who came up with such a stupid expression!?? When kids are two years old and want to get a blue mohawk and a nose ring you do NOT say yes, and say “Well, I’m happy if you’re happy.” Why? Because they’re TWO dadgum years old for cryin’ out loud! When they are ten and want to drive a car down the open highway while drinkin’ an alcoholic beverage, You don’t say Sure. I’m happy if you’re happy. Why not? Well for one thing it’s “agin”  the law, and for another they’re TEN YEARS OLD!!  So let me ask a genuine question. When did it become a normal thing to say, “I’m happy if you’re happy .” to someone you care about doing something equally as stupid? They wanna’ get drunk every weekend and drive themselves around, but sure we’re happy as long as they are. They wanna’ get married 9 times in a row , and wreck the lives of everyone around them, but hey why not? They’re happy , right? And I understand that people are “grown” .They can make their OWN decisions and don’t need my “input”.  I get that. They’re adults. Well, then you know what ? They oughta’ ACT like it. And I don’t reckon ANYWHERE in the Bible did I read it promises we DESERVE to be happy all the time. I ain’t never  read  where it says that.

About Me~, Uncategorized, Writing

A Bible, a Bogg, and a Blessing ~

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It’s been a crazy couple of weeks here the last couple of weeks, at our house. We’ve been getting ready for “Bogg Week”. For those of you scratching your heads just now, that’s Arkansas Southern Baptist speak for Bogg Springs Baptist camp week. A whole week of craziness that requires packing enough clothes for two teenagers that seemingly turns into enough clothes for an army. Yet somehow they return home with clothes for not even ONE child. They go clean , excited, and revved. They decamp; dirty, tired, but spiritually revived, and having made new friends. I know a lot of people think how great it is to have their kids gone from their house . Well, let me tell you. I am NOT one of them. I enjoy their noise, I enjoy the energy that their big growing teenage bodies fill our house with. I do NOT enjoy knowing that they are not here down the hall in their room; THAT  is a very empty feeling indeed. So my bedside Bible has been a particular comfort these last couple of days. As they are 15 and 17 , I know soon enough they will make career choices that will take them far away from me. I WILL be happy, I SWEAR!! 🙂 I will be proud! It will mean I have done what I set out to do , those very short years ago, to send them out clean, excited , and revved. And to let them know , it’s always okay, to come home and decamp; dirty, tired, so that you can spiritually revive. Home should always be like that . It is your greatest blessing. I know mine still is. Today , finding myself in need of a little bit of that refreshment myself, I hied myself up the hill to the shade of the old oak  and rocked with my Daddy awhile. So whether it’s the Bible, the Bogg, the old oak, or wherever you find yourself today, don’t forget you CAN still  find your refreshment in God today.