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.

Uncategorized

Everyday A RESOLUTION~

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  I’ve never been a big resolution-maker.  Well, I mean, at least, not at the first of the year , anyway.  I’ve never quite understood why people assign such significance to the idea of dates.  Those are ALL pretty much man-made observances, if you think about it.  New Year’s is not the same the world over.  I am a devout Christian, but Jesus was NOT really born on December the 25th,  and Christmas really started as a pagan winter celebration regardless.  Easter is pagan, Halloween, certainly is.  Birthdays, again, a man-made ritual.  Anniversaries , the same.  Valentine’s , a day to give cards, chocolates and ridiculously expensive jewelry to the one you love in honor of a saint who was martyred. Romantic , right ? A lot of people think it odd that my husband and I don’t really celebrate our anniversaries or birthdays.  I don’t wear a ton of jewelry, and have never cared much for gifts from the florists’ shop.  We don’t make New Year’s resolutions about how we are going to “do better”  or ” treat one another with more respect” etc.

Our boys have picked up on these traditions which has made some of their interactions with others a tad unusual. What people don’t realize however is this…………….we give gifts to each other all year long. We RESOLVE to treat one another with respect every single day. We have had a lot of illness in our family so we try to make each and every day special in our lives. Why wait 6 months til Christmas to buy that sweet gift if you might not BE here at Christmas ? My husband lost his mother when he was very very small. He met me when I was only 16 and I was already extremely ill. When we had our boys he was so afraid that history would repeat itself so we promised to make memories for the boys to keep with them all their lives. We couldn’t dilly -dally around until Easter , or birthdays . Minutes counted, and still do. Now the boys are nearly grown and aren’t really boys anymore. Resolutions aren’t something that they really know about. It’s hard to explain how you want your YEAR to end , when you don’t even know what the end of your DAY will be like! But really absolutely EVERYONE’s lives are this way. They truly are. We don’t know when our time will come. It might be tonight, it might be tomorrow, it might be 5 minutes from now. You don’t have to be ill, or even old. So this year in 2015, instead of RESOLVING to make your year better, let your dreams set sail!  Resolve to start right now,  resolve to do what brings you JOY , and make every SECOND starting now , better. It will make a bigger difference than you will ever know.

About Me~

WHAT KIND OF DIET ARE YOU DOING??~

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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.