About Me~, art, inspirational, Poetry, Uncategorized, Writing

Crossings ~

4ba1c1a092d0e9b4f66b5e57745a5771

I’ve always been fascinated with eyes. From the time I was small , and realized I could draw , I was determined to get the shapes and forms of eyes realistically captured on paper. Human eyes, animal eyes.  I can’t remember a time in my life when I didn’t love looking at people’s eyes when they spoke. It seemed to me they spoke volumes about what it was they were really saying.  I never really realized until I was grown that although a person could be telling you one thing with their words,  that their eyes could be telegraphing something  quite different.

I guess there’s quite a whole psychology behind that kind of thing now, and educated folks who know about that kind of stuff would say I probably have some kind of a complex or something. That whole Nietzsche quote , “And if you gaze long enough into an abyss, the abyss will gaze back into you. ” , and all that jazz.  I’m not so sure that’s what old Friedrich meant.   I’m more inclined to believe in the Biblical standpoint of Matthew 6 :22  “The light of the body is the eye: if therefore thine eye be single, thy whole body shall be full of light.”

So I guess, really it’s my unconscious way of gauging whether I like you or not. My mother has always joked that I have an instant people -radar . Either I like you or I don’t. First impressions, ALWAYS. And I think it’s the eyes. I can just kind of tell , ” Yep. Me and these peeps , we’re gonna’ be friends.  Or these people are shady, I don’t like ya’ now, and I ain’t gonna’ like ya’ later.  Maybe that’s wrong of me. I’ve always tried to trust my intuition in those kinds of things, and in most cases it’s served me well.

Besides , eyes are quite beautiful , don’t you think? The colors, the shine, the slight twinkle that says they know something that you don’t. And that maybe, just maybe if you look long enough, they might let you in on the joke.

Very young eyes,  eyes full of life, and of course my very favorite , the eyes of the very old. The things they’ve seen and the secrets they hold. If I could have a camera to capture it all.  But of course , the films are theirs. Memories only they choose, to keep wound on the reels of the 8mm cameras of their minds. And rightfully so.

  Because there is a word for this soul gazing  ~ Opia ~ The intensity of looking someone in the eye which can feel simultaneously invasive yet vulnerable .

 Perhaps Nietzsche WAS right in a sense,  but it’s not an abyss at all; it’s a crossing,  a sharing  of sorrows , of joys , of things unsaid,  and songs unsung, and a time passed between two like souls.

 

Advertisements
About Me~, chronic illness, humor, inspirational, Uncategorized, world affairs, Writing

Against the Flow ~

 

fishfilmstrip

Fair warning.   I like to give fair warning. If  a post might seem long, or  scatter-brained, or even if some of the topics or wording might seem offensive to some.  I had no idea until just a few years ago that even the very discussion of illness is considered offensive to some.  There are things called content warnings,  and trigger warnings.  I don’t really do that here.  It would be great if the world were all cotton-candy and lollipops but it’s not. Unfortunately, in the real world there is potential for your feelings to get hurt.  So I said all that to basically say this post might be long, and you can feel free to leave, I won’t be offended. So onward, and upward!  🙂

Anywho, This month , May, is Lupus Awareness Month.   For those of you who follow my blog, you know that I have lupus, and have had for about 20 years now.  I run a lupus support site on FaceBook  called Lupus Sucks ! Lupus Support and Humor . I’ve run it about 5 years now, and have about 9,100 followers.

https://www.facebook.com/lupussuredoessuck/?ref=aymt_homepage_panel

That’s not to toot my own horn , by any means . It’s really rather to toot the horns of the amazing people on my page.   My BUDDIES I call them.   They’re amazing. They rally around each other.   They grant  words of encouragement.  They lift us up when we’re in the  hospital  , offering ways to get by  when we’re  having wretched stays in those most horrid of “Hiltons”  🙂  We’re able to help each other find doctors, share tips on what works best for exercises on already hurting bodies,  and most of all , my favorite part , is find humor, yes, I said find humor in this crazy life that got chosen for us.  By God , or the Universe,  or Fate, or however you decide the great wheel of life chooses these things.  002c9f165a729c2482566b023003f4e3

I’ve often told people if I hadn’t been able to laugh I’d have died a long time ago.  I hope that I have been able to grant some small bit of that humor to someone else. It really is okay to laugh. I decided a long time ago , I was not going to let this crazy disease and all it comorbid compatriots to steal my joy.

Which got me to thinking about May being Lupus Awareness Month, and all the things that come with it. I’ve been trying to do research about Lupus Awareness Month. When it started, WHO started it? Why is it in the month of May?  Why is our symbol the butterfly? WHO made these decisions? Was there a committee formed? Who was on the committee? Did the people on the committee have lupus? Who decided that purple was a good idea for our color ? Seeing as how this is the list of disease that use purple or some variant of it for THEIR awareness

Lavender Awareness Ribbons
Lavender awareness ribbon
Periwinkle ribbon
Periwinkle awareness ribbon
Orchid
Orchid awareness ribbon
  • Testicular Cancer. There is debate about the color for testicular cancer awareness and ribbons, however orchid, a purple/violet color, has long been recognized as the official color for testicular cancer.
Violet ribbon
Violet awareness ribbon

Are we really using the MOST effective color in our push to get people to be aware of the disease we are affected with? I have been to many sites over the last couple of days , looking for ways to get flyers with info, or ideas for spreading awareness in even my very small town. They offered no ideas , or assistance. No free printable information.

So I guess, I’m confused. Confused and a bit angry.

To be perfectly honest, I’ve never been angry that I have lupus. I’ve always looked at it like I got dealt a lousy genetic stack of cards. I was never angry at God. I didn’t rail at Him , saying , “Why me? ”  But I find myself feeling angry at the lack of support from these for lack of a better word “mega-corporations”. These are the people who are supposed  to be backing us up. With ideas, with materials to make flyers, with community research . They are the people that are supposed to make things HAPPEN. 

 

On that note, did anyone ask YOU , did YOU want the butterfly for the lupus symbol?

If you could choose an animal , what would you choose , and why?

Did anyone ask YOU , if May was the best month for Lupus Awareness Month for you?

If you could choose a month, which one would you choose , and why?

Did anyone ask YOU  how you felt about purple as a representative color?

Would you have chosen a different color , and if so , which one?

Why are there NO (Non-Profit) materials geared towards the average “LUPIE” ?

What kinds of materials do you think would grab the attention of the  public?

(Meaning ~ Female , between the ages of 15 and 44~ in other words , we’re young and cool not some doddering bunch of people in nursing homes )

We’d appreciate cooler , more age appropriate , materials geared toward that audience.

How do you best think we could attract the attention of the general public that we are trying to educate?

 

All that being said, I know we all have our struggles. With mobility, with being out in the sunlight, with fatigue, with emotional and stress issues. I know some of us have physical limitations which prevent us from getting out and dealing with the public. I know there are those of us who can’t speak on the phone, as it causes anxiety. I am not expecting anything to be done THIS May , but wondered if we might pool our ideas, and resources; creatively ( ideas, publishing , marketing) charitable, ( those with access to businesses who might help us with flyers, stickers , pins or buttons,etc. ) or simply working up a way to have it mentioned on a local news station. Please feel free to let me know any ideas that you have. And remember, our lupies are women between the ages of 15 to 44, but of course , the more people who are aware is even better.

I want so much to make a difference in the next year.  And I BELIEVE that we CAN DO IT!!  So maybe, just maybe it’s time WE 

1c0492cdb4998e42149b2f25058a0c1d

About Me~, Uncategorized, Writing

Self-Soothing, Sweaters and Socks ~

Day Three ~ Comfort ~

Hello! So far in our series 26 Days, 26 Ways (to feel better with lupus) , we’ve learned to

A: Acknowledge and Accept, and

B: Breathe.

So in that same vein, today’s word is Comfort.

 

f6b358916bbe05ba60c992f18c619351.jpg

Firstly, I feel like something HAS to be said, before we discuss today’s topic. We as chronic warriors seem to , as a whole, put ourselves last. We’re forever rushing around, trying to help every-one and every-thing.  In spite of our pain, or maybe BECAUSE of it we hate to see other people hurting, and will do everything in our power to make sure they’re okay. And of course it’s a wonderful idea to look after other people who are in our situation as well.  But the thing that HAS to be said is this, “When you have a chronic illness , sometimes you must put yourself first. ” I think we as lupie warriors are some of the kindest, most compassionate people there are, and sometimes we shoot ourselves in the foot that way. I’ve been diagnosed with lupus and its lovely cohorts for about 19 years now, and I still struggle with the fact that it’s okay to put my own name on top of the “Needs Help” list. That being said, here are a few things that I’ve found really make a difference in the Comfort department.

  1. Easy -on – the skin , clothing~ Such as leggings, and soft tunics.  Sweaters and socks. Now you might be saying to yourself that’s a splurge item, and you might be right. But to me, it’s definitely worth spending a bit more money to have clothes that don’t pinch, or squeeze you in the wrong places. They have tons of leggings to choose from at our local Wal-Mart, and you can’t beat them for the price. For tunics, or midi dresses to wear with your leggings, Amazon has so many to choose from you could have a different look every day!
  2. Sunglasses ~ prescription or over the counter ~ One of the jollies that lupus brings with it is, sensitivity to light. Light bulbs; incandescent and flouros both, along with of course , the sunlight , it can make you feel as though you even need shades indoors.  I like buying sunglasses at DollarGeneral, because very seldom do they ever cost more than $8.00 a pair. I have to wear prescription eyeglasses, so when I buy tinted lenses at DG, it’s good that they have pairs large enough to wear OVER my prescription glasses. I usually have anywhere between 3 and 4 pairs , at any given time. A pair in my purse, one for the car, and anywhere else I think I might need them. Doing this has sure cut down on the number of migraines, and eyestrain.
  3. Sunscreen~ Just as with our eyes, lupies have a “MEhhhh……..” relationship with the sun, concerning our skin.   The sun can cause our rashes to worsen, cause us to break out in hives, or even cause our disease to flare. Even “normies” need to find a brand that works for them, and apply it every day, no excuses! Skin cancer does NOT sound like fun , as one person dies of melanoma every hour.
  4. Medications ~ both prescription and over the counter~ There is nothing worse than having a flare , and NOT having your go-to medications on hand. When I am struggling with increased symptoms ;  nausea, vomiting, severe joint pain, body ache, and blood pressure difficulties seem to be the run-of-the-mill. I once had a rhuematologist tell me, “Never let your pain get so far past the level you can cope with. Because by the time it has gotten to that point, it will take extreme intervention to get it back to a manageable level. ” . And he was right. Everyday maintenance is SO much easier than damage control . Keep a tight record of your meds , so that a middle of the night pain cycle does not catch you unaware.

5. Mr. Sandman ~ And last but certainly not least ~  A quality mattress and pillows ~ Sleep is a HUGELY important piece of the wellness puzzle. The average HEALTHY person needs 8 to 10 hours of sleep per night, and we as chronic warriors will need more than that , as our bodies try to repair themselves. We will often sleep 11 to 12 hours a night, with a  couple -hour nap during the day.  Everyone’s wants and needs  in this area will be different. Maybe you need prefer firm, or super soft. They even have the SleepNumber mattresses now, so both parties can adjust the firmness to suit them.  This will of course be up to the individual person.  I myself,  always enjoy having lots of pillows for my side, as well. Fairly firm, I use two for my head, and I  can’t do without my body pillow to keep my old knobby knees from touching one another. (OUCH!)

These are just a few of the things that I practice , in order to make myself more comfortable , every day . If I listed everything I’d need a blog just for that! 🙂 And I’m sure there are things that you would add, that I don’t have mentioned here. The idea is, to make the list your own, with the things that YOU need to make your journey easier.

I hope today finds you doing the best you can, with what you have, where you are. With ❤ and 🙂 and as always ((HUGS)) ~ Ruby J.

About Me~, Uncategorized, world affairs, Writing

Thirty Eight and Counting

romanichalgypsystylblackandwhitee

 

Thirty-eight. That’s the age I’ve turned this year, and 13 years longer than the doctors gave me to make it without a heart transplant. They told me , “MS. Woods , if you don’t get one , by 30 you’ll surely be dead. And that’s WITH pumping your body full of ungodly amounts of medications that I can’t even pronounce, and that you might be glad that I don’t list the side effects of here. Needless to say, sometimes you might just wish to keel over from the heart related condition, rather than the medications.

Thirty -eight. Ever since I was little I’ve had a somewhat interesting relationship with numbers. Some might even say a compulsion. How many steps is it to the mailbox? 34. How many tiles are in a certain bathroom? 12 over and 10 across. It’s kind of a calming thing to me, I suppose. Numbers were just another thing that were brought into play with the births of my sons. They were born exactly 2 years, 2 days , 2 hours and 2 minutes  apart. And they ‘ve been inseparable ever since.

Thirty -eight though, even though I’m not really superstitious . I just thought it’d be fun to know some things about the number that is supposedly  affecting my life this  year.

  • 38 is an even number.
  • 38 is the sum of each row in a magic hexagon.
  • In Norse mythology, the number 38 was said to represent unnatural bravery.
  • There are 38 surviving plays written by William Shakespeare, how sad is that , really, this great genius of a man , and all we have left of his plays is thirty -eight.

Thirty -eight. That’s probably closer to the amount of medicine bottles I have, or even the amount of doctor’s visits I make. But you can’t look at it like that.

Thirty -eight. The amount of smiles I’ve  received from World War II vets who spent the hour in the waiting room telling me their stories. Or maybe I even got thirty -eight hugs from people I didn’t even know.

Okay, Okay, Sometimes I have to be honest. Some days, I get thirty -eight vials of blood drawn, and do good to make it to the parking lot again. Some days I have to line up one of those hospital visits that might end up lasting thirty eight days.

But truth be told, it really is like I said. It’s only numbers, and I don’t put my faith in them. As much fun as it is, to say, “What a neat coincidence that is! ” or “How fun it is to notice the comparisons between things!” , I KNOW the ONE who came before there was even such a thing AS time. And who will be here long AFTER time will be something no one will ever remember.

And really, what is 38 in comparison to that?

group-flowers-pink-tulips-white-background-panorama-spring-landscape-49104495

 

About Me~, Uncategorized, Writing

Scrambled~

dccd353e9646b0e6e6192b9f0329aba9

 

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 ~

women-bench-monochrome-sitting-window-panes-1762x1145-wallpaper_www-miscellaneoushi-com_76

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~

1970sraphoechick

 

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.