art, Poetry, Uncategorized, world affairs, Writing

#cyberpunked

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“Do androids dream of electric sheep?”

What would we know of the secrets they keep?

An altered carbon,  a perfected sleeve. 

Would there be random fragments of code, 

those ghosts in the machine?

If you weren’t real, how would you know?

Your programming would not tell you so.

In simulation it would all seem to  turn,

streams of   data, digital burn. 

Iamus?

ICARUS? 

Beauty and flaws. 

Asimov, Morgan, 

Turing, Three Laws. 

 

 

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About Me~, art, chronic illness, humor, inspirational, Poetry, Uncategorized, Writing

The Things We Carry ~

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We’ve all seen them.

There are all these quotes on FaceBook,

Pinterest,

Instagram,

and Twitter.

They seem so bold, inspiring, liberating……freeing.

Things like , “Leave the woman you were , in the past, because the future is bright. ”

And Lord knows, I’ve been guilty of sharing some of them.  They seem good.

But I was suddenly struck by a bolt from the blue , yesterday.

You see it was my 39th birthday .

15 years past the date when they said, I should not live.

And it dawned on me , as though the universe itself had spoken to me ,

in a moment so clear I could almost have sworn everyone around me had heard it.

Saying, “You do not have to leave the woman you were, in the past.

You do not have to leave the person you were as a child, as a teenager, or as a young adult.

We do not leave those people behind somewhere in the ether of the universe.

We carry them with us. Not as a weight, or a burden.  Not with hurt, or pain; but we carry them with us ,as knowledge.

Knowledge that lets us reach others. And wisdom to see that although there was hurt,

we grew tall and strong in spirit anyway.

We carry them as teachers, reminders that who we were then , is still valuable in the journeys we take today. We wear them as deeply as if they were  sewn on badges , celebrations  that we survived.

So I will not leave behind the child I was, the gangly teenager I grew into, or even the much -scarred woman I have become.

I will be all of those people , all at once; the child, the youngster, the woman.

And walk through this world with the quiet  knowledge

That in spite of it all,

I made it. 

About Me~, art, inspirational, Uncategorized, world affairs, Writing

How Bizarre~

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The beautiful is always bizarre.  ~ Baudelaire 19657041_1349803748431210_6828812241786549423_n

I’ve never BEEN normal.   It was a certainty in my bones , a knowing even. An intrinsic feeling , yet not a difference that I felt was a problem. I didn’t SEE it as being a difficulty. I knew I was not like other people. I don’t say that as a form of braggadocio or as a way to say I was better or somehow on another plane. I came into this world , a wild animal. For most of my early years I refused to wear clothes, driving my mother to insanity. I thought going about skyclad was the best thing in the world.  When she DID manage to keep me clothed, it had to be boy’s clothes of the most ragged variety imaginable. Jeans, cutup, cutoff, dirty, t-shirts the greasier the better. My Dad’s castoff welding hats and goggles. A pair of corduroy Levi knickerbockers. Cowboy boots with the soles worn completely through. A set of leather chaps that a friend of mine had outworn. I spent my days out of doors ;climbing every tree within 10 miles of my house. Skinnydipping in the Little Missouri river until I was sunburnt to the color of red ripe watermelons we gommed from Granny Jo’s garden in the evenings.  I don’t know how my mother kept from killing me in those years; I never shut up, when I WAS home, which was seldom, I despised school work; what was I going to need all THAT useless information for anyhow, I wanted to be any and everywhere besides chained to that drudgery . I brought home any and every creature I could find , that slithered , crawled or flew, and was sure that both my mother and sister would find homes for them, and be just as fascinated as I was. (  I was wrong on both counts many times. ) Come to think of it, I don’t know why my SISTER didn’t kill me in all those years. I’m sure she had just cause. She was all the things I wasn’t . She was clean. She was a whiz at school, quite dedicated to it actually. And she actually kept her clothes ON. She swore on many an occasion, that “For the love of GOD, Nette, you are adopted. I swear. You actually belong to some nudists somewhere!!”  Heh.

I guess , to me, life just all seemed so bright, amazing, full of things to see. It still seems that way. Everywhere I go now, I still wonder why people want to be “normal” . And the funny thing is they struggle so hard to do this thing they call “fitting in”. What IS that, anyway? I had an interesting conversation with my niece, just the other day.  I was asking her , about a certain person , “Why is he dressing that way?” ( Meaning goth, emo, shopping at HotTopic, you know the whole ‘look’) She said , “Well, he’s making a statement I guess. Trying to stand out. ” So I asked her, “But if EVERYONE is doing that now, dying their hair, getting tattoos, going “goth” , and shopping at HotTopic, are you really making a statement? It’s not. It’s the new ‘normal’, isn’t it. ”  She didn’t really know what to say to that.  See, I don’t have a single tattoo. I don’t dye my hair technicolor. I’m not some trendy gender. Been married to the same guy for almost 21 years. I don’t have a nose ring, or some other odd piercing.  I think people ought to be respectful to others , and pretty  much live and let live. Wow.  In this day and age, guess what? I’ve become the new bizarre. And to quote Baudelaire, “It’s beautiful. “

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

Crossings ~

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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.

 

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

Against the Flow ~

 

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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.

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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 

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About Me~, chronic illness, humor, inspirational, Uncategorized, Writing

GOOGLE MD. ~ and proud of it.

Hullo to all of you on this fine Sunday EveryBUDDY! I hope it finds you well! I am up and at’em and have been since about 1 a.m. with the prednisone jitters. Just another one of those lovely side effects. I hope your weekend has been going well for you! Mine has been decent. Not great, not awful, just decent. Sometimes that is all we can hope for. Anywho. Here we are , Haha. R. Down to the letter, “R”  Here is the list so far …..

A: Acknowledge and Accept

B: Breathe.

C. Find  Comfort

D. Get a Doctor or team of them you can trust

E. Exercise ~ even if it’s just a scoonch ( Hey ! Scoonch is a word!)

F. Have Faith

G. Set a Goal , even if it seems small

H. Hugs! Everybody needs them!

I.  Sometimes we need, Isolation 

J. Rid yourself of Junk

K. Keep Kindness as a philosophy

L. Laugh long, laugh often!

M. Medications

N. No

O. Okay

P. Perfection ~ Not going to happen 

Q. Question everything!

So , today’s letter is “R” is another really elegant letter , really . It’s the first letter in my name, and one of the first ones I learned how to write. Today it stands for “Research.” When you are first diagnosed with a chronic illness, you kind of are just in a daze. You are just fogged over with this haze. The thoughts just crash in on you with this horror…….”Oh crap. This is my life now. What is going to happen to me? ” So you just take the stack of prescriptions that the doctor hands you , go down the hall to get your blood work done and you leave with a kind of weird numbness. Only later does it hit you that you asked NO questions, you thought. You didn’t ask what would happen. You only did what you were told like a good little patient. You were “compliant. ” And some people continue in this pattern, over and over , for fear of upsetting the “Almighty” the physician.

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This is VERY dangerous behavior. And I allowed myself to nearly be killed by it . By my first rheumatologist. I don’t think it was intentional on her part. She just was very busy , and very arrogant. Lots of doctors suffer from an overload of patients, and the “god complex”. This is why research is so important.

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READ. READ. And then read some more. And YES, as much as doctors will tell you Google the heck out of stuff. I don’t care what they say. The internet is a very valuable tool . We cannot afford to not make use of it. In our fight against what we have going on we must use every tool we have at our disposal. Because you know what they call a doctor who graduated at the very bottom of his class in medical school?  ———–Doctor. Yeah. So there ya’ go. I make no apologies for my snark . Heh.

Oh, and if I haven’t said it today, I LOVE YOU! with all my ❤ and 🙂 and as always ((HUGS)) ~RUBY J.

About Me~, Uncategorized, Writing

Primum Non Nocere

 

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“An apple a day will keep ANYONE away, if thrown hard enough. ”

Doctors. Love them or loathe them, most people will have to see a few of them over the course of their lifetime. If you are “normal”, you will probably only ever see a General Practice doctor. If you’re female, perhaps an OB\GYN for checkups and pregnancy. Maybe an ENT (ear , nose and throat specialist) , and of course a DENTIST to maintain your dental\gum health.  If you are blessed with good health, these are probably all the medical profession you will ever be acquainted with.  (And that’s great!)

If you had told me , when I was very small, that I would see more doctors in a year, than most people see in their entire life, I would have laughed you off. I just couldn’t see HOW I would ever need that much attention from the medical community.  Boy, was I wrong.

With many symptoms, come many doctors! I have a cardiologist, a rheumatologist, a neurologist, an allergist, and of course, a general practice doctor. It has taken many years for me to get the doctors I have needed for my medical team. It’s so important to remember that, “Just because they went to medical school, does NOT make them a great doctor. ” . Or even a GOOD  one. So here are  my tips for getting the best medical team for you.

  1. Before you make the appointment; RESEARCH! Research, research!  Ask your friends and family if they know the doctor. Get their opinions.  Google will be a huge asset in this department as well. Look up their clinic, and their track record.  What are their wait -times like? If they are located far away, do they offer services and benefits that are worth the stress of a drive , for you?
  2.  In the weeks before your appointment; Make a symptoms diary. Keep track of your sleep and any medications you have taken, as well. This can help your doctor see the severity of your condition over a long period of time.
  3. During the week ahead of your scheduled date; Make a list of all the questions you would like to ask, that way you will not be sidetracked by the busyness of the appointment.
  4. At the appointment; Bring your list, and ask your questions. If the doctor seems reluctant to give you answers, or gives you the “run-around” , speak up.

Finally, if you don’t get the answers you need, if you feel the doctor’s “bedside” manner is not going to mesh well with yours, or if they otherwise make you uncomfortable , then find a new doctor! After all, THEY work for YOU, not the other way around, and you only get one life. You deserve the best, and so do the people who care about you.

There is absolutely no need to add to  the stress of your already stressed life. Doctors should  be your advocate , following their motto.

Primum non nocere

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With all my ❤ and 🙂 and as always ((HUGS)) ~ Ruby J.