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

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~, Fae, Uncategorized, Writing

All The Best People Are ~

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I couldn’t take it anymore. I was going to go mad. I was sure I was. Absolutely bonkers. So.  I walked out. It was SO beautiful outside today. I just couldn’t stay cooped up in this house one single minute more. I literally felt as though I had no air. I told my sons I am going to walk to Maw and Paw’s. If it kills me. I mean it very well could have I suppose . It’s only next door, not even a mile. But me and being upright, we don’t really gee-haw. The world quite fantastically becomes topsy-turvy , and not in the fun, Through-The-Looking-Glass -Sense, but in the I need the emergency care sense. But I just couldn’t take it anymore. I love being outdoors more than anything. Being basically sofa and bed bound is soul-crushing.  The same views. The windows. The monotonous television, computer, and even as much as I love them, yes, books.  I mean my husband has done amazing things for me outside my windows, so that I have my bird feeders. He keeps my plants , vintage lamps, and green glass insulators situated in the lights so that they are sparkling. Those are all wonderful things. But oh, today. I just missed it so much . Did you ever just long for the smell of the woods, and the feel of the wind, and the sound of the gravel crunching under your feet? Walking to my parents should have been a five minute walk. It took my son and me  nearly half an hour. I went very slow and very steady. The joy though! The deep green of the moss on the creek bank . The birds flying over from the oak where Grandpa used to sit in his old cast iron farm chair. I kicked the sand up with my bare feet even in the cold and even in my exhaustion it was the most glorious I had felt in what seemed like forever. I know when I appeared at their door, my parents thought I had indeed, “Gone round the bend.” so I assured that “Oh yes! I was. But then again . All the best people are.”   My sweet Daddy did do me the courtesy of a ride , so I didn’t have to walk back. But maybe we all need  a little bit of insanity sometimes ………..just to really feel sane.

About Me~, world affairs, Writing

Do You Have Enough~

Enough.   That’s quite an interesting word isn’t it?  Makes a whole lot of the world go ’round . Or people think it does.  Enough of a house , enough of a car, enough things, enough clothes, enough popularity, enough money, enough friends, enough of the newest gadget.  They spin their wheels , and use up their bodies tryin’ to get ENOUGH of all the “stuff” I just listed , because they’re so sure that it will keep them up with the Jones’ or the Smiths’ or whoever is at the top of the leaderboard these days. Their children pick up on this greedy attitude , and so they become unhappy with the things they have and begin to holler for more of what they already have . It is never Enough.  But I have learned a secret , and many others have learned it too, not one bit of it will be “enough” when you do not have your health, or you have lost your loved one.  The largest house, the most expensive car, the best tailored clothes, the biggest group of friends, that newest iPhone. It is a harsh truth , it is not ENOUGH. Your hands can be full, and empty at the same time.  The storms that passed through our little community took a terrible toll .  Look around your life and realize that you probably have enough. And let’s all think before we ever complain again.  My prayers go with those who are hurting.  ~ Ruby Jeanette

Uncategorized

Like I Haven’t Heard THAT ONE Before~ “You Don’t LOOK Sick!”

This is me. I like like poetry, writing it, reading it, hearing Robert Burns read in Gaelic style. I’m not going to tell you my age , if you know me well enough to have read my blog, or just know me well enough, then you know how old I am. I have black hair, and green eyes. 10603462_729906193748723_4065940491525995201_n 10411255_729906263748716_5728919877270098224_n 10625102_729906277082048_4005102635514899624_n

So here in this picture you might make all kinds of assumptions. She looks young , vibrant and healthy. She looks like she enjoys spending lots of time outdoors, and is fairly active. She looks good. But here are some more pictures of me.

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This is what I look like too. I have systemic lupus erethemetous. I also have complete heart failure, nervous system damage, seizures. Raynaud’s phenomenon ( a circulatory problem that causes your extremities to turn blue, purple or even black with cold) , Sjogren’s ( an auto immune condition that causes extreme dryness in your joints, and other areas such as your mouth , eyes and soft tissues.)  , and also POTs. Postural Orthostatic Tachycardia Syndrome a rare heart condition caused by my lupus damaging my nerves in my heart. I get adrenaline overload almost constantly from these, and so my heart rate runs a constant 125 sitting still , if I attempt to move or do any activity it will shoot up closer to the 200 bpm mark. I only have 30% function of my heart, and have such extreme allergies that just the very smell of certain things can cause me to have an extreme reaction . So WHY did I show you these? Because I want you to know what a person with lupus REALLY looks like. To know that we deal with excruciating pain on a daily basis, but still manage to look that first set of pictures. We don’t want your sympathy. We want your compassion and understanding. We want you to know that people DON’T take us seriously BECAUSE we DON’T look sick. We’re warriors every day . Our bodies are the enemy, and the weapons the doctors have given us are very limited. What we have is fatal. Yes, I said fatal. There is NO cure for lupus. It is the zombie of the disease world, eating us from the inside out. And yet, we still manage to get up, smile, walk on, love our families, and still hold joy for life, however short it is.  So maybe that’s why we choose to make sure that people see us this way, and why we hear SO often that dreaded phrase, “But you don’t LOOK sick!!”

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