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

Are the Odds Even, or the Even Odds?

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Pain is a funny thing. No, not funny “haha”, but  funny “intriguing” .  Pain is our body’s unconscious reflex to avoid something injurious, or to an injury or illness.  In theory, (  scientifically-speaking) it can only be felt in organisms with higher brain function. (Although how they would just that I don’t really know, might not WANT to know. )

Most people bless them, and their good fortune, have only known physical pain  from the standpoint of accident, injury, normal illness etc. They remember these things, but it isn’t an everpresent thought, or ongoing mental conversation they have to have.

But what would you do if you just woke up one day, and the pain never went away? EVER.  Some one once asked me what having my condition was like. I told them, “It’s like your body’s pain function is an old FM radio, with knobs that can be turned up or down. Most people , their knobs function like they should, being able to be set a certain way , pretty much most of the time. But my radio, the knobs are not only non-functional, they’ve been knocked off completely. So I have no way of even adjusting any of it.  It is set permanently at full volume. ” Yeah, fun times.

So pain HAS made me the “odd one out”. When you are 19 and are such an odd medical “rarity” that the doctors bring their students around to “observe” you.  When you are 21 and spending more time in hospitals , than your peers do in clubs.  When you are 25, and the doctor asks, “Where did you go to medical school ? “, (in all seriousness) , because you have more medical knowledge than his interns.

But it’s made me the odd one out in other ways as well. When you are 19, and can empathize with any elderly person, because you have so many medications.  When you are 21 and are able to help another person get a diagnosis, and help them realize, “I’m NOT crazy . This wasn’t all in my head!” , and when you are 25 and are able to educate others about many , many aspects of life-long illness.

You adjust. But you do NOT “get used to it”.  Trust me. Mind-numbing, bone -deep, “Oh  God kill me now.”, pain is NOT something anyone EVER gets used to.

So don’t be fooled by the smile you see  someone wearing. You have no idea what it is costing them.

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

Hillbillies, Happenings, and How are y’all?

 

 

14424721_1216518198420851_2592819625145033806_oSo , How are y’all ? or as some would say , How y’all are?  There have been quite a few interesting happenings  in my lovely home state  of Arkansas in just the last few days. Some private citizens paid to have a monument to those good list of rules that are just a pretty good idea for all people to follow, or you would think pretty much everybody would think they are good rules for everybody to follow. You know things like, “Don’t go knockin’ your neighbor over the head. ” and “How ’bout we don’t make off with things that don’t belong to us?” and here’s a pretty swell idea for the general population , “How’s about we don’t lie to each other , so as we can trust what we all say?”  and maybe , ” Let’s not go gettin’ naked with somebody else’s spouse?” that wouldn’t be an alright thing, now would it?. So anywho, they put these and few more like them on a big ole rock, and put them on the lawn of a building. Now the government didn’t pay for them, some regular people did. And they were no more out there a day , then what some feller decided he’d run them down with his car while shouting , “FREEEEEEDOOOOMMM!!!!!” Yes. This really happened.  And what’s more , apparently this individual had done this once before.

So this happens two days ago. Now TODAY,  in some club in the capitol city of my home state some people decided that they were offended by something someone said, or did, or just looked at them sideways, and 25 people were shot, and 3 other people were wounded. No one died. Which brings me to the point of my blog today. Which is……… WHEN people find out I am from Arkansas. Which is pretty much right  after I open my mouth. ‘Cause I guess, I have an accent. Who knew.

That’s right . Y’all go on ahead and laugh. Everybody else does. Other people have two reactions. They either think it is the sweetest thing ever, or the most ignorant . But it’s always the same. “Oh my goodness, that is just the sweetest thing! Where are you from?!?” or “Well, don’t you just sound stupid. You MUST be from the South.  ” Because apparently, being from the South, especially from Arkansas , and having my particular accent , makes you immediately some sort of inbred with the I. Q. of a turnip.  And these types of news stories are NOT helpful. So I am going to set the record straight, we have had loads of educated, brilliant , magnificent people hail from here, and  as a tiny tasting here is a small list……………..

Alan Ladd ~ Actor

E. Fay Jones  ~ Architect

Maya Angelou~ Poet

John Grisham ~ Author

Sam Walton ~ Founder of Wal-Mart

General Douglas MacArthur

Brigadier General Archibald Yell

Glen Campbell ~ Singer

Johnny Cash ~ Singer

Ne-Yo ~ Rapper

Hattie Caraway ~ 1st Woman U.S. Senator

Dick Covey~ Astronaut

Hangin’ Judge Isaac Parker

President Bill Clinton

Luther Capps

Okay, so you probably don’t know the last name on that list. But to me he was the most important. He’s the man in the picture above. He was my Grandpa. Now he didn’t go to some fancy dan college. And he had an accent too. But he was in my estimation one of the smartest men ever. He could grow anything. Fix anything. Build anything. He was born in 1913, and lived through the Dust Bowl, and the Great Depression. He picked cotton, lived in California and worked the orchards, rode the rails as a hobo, and did anything he had to do to survive. He had muscles like whipcord even in his 70s and could out work men half his age. He taught me to drive , barefooted in an old 1963 Ford Falcon pickup on a backroad with the windows down and the air so hot you felt you couldn’t even feel your lungs move anymore. He followed those rules that the crazy FREEDOM shouting man so callously ran over.

 

So I refuse to apologize. That man running down the 10 Commandments and the crazy nightclub shooters are not what the “average person ” is like here. The “average” person here is like my Grandpa , God rest him.  So, NO, I am not going to “flatten” my accent to make other people feel better about themselves, or to hide where I am from. I will straight up tell you, “Yes, I am from Arkansas. No, we are not ignorant hillbillies. I do not care that you think my accent is stupid. Yes, we talk slow. Maybe it’s so all of the REST of you people can understand , ’cause y’all are the ones a little bit ‘off’, did you ever think of that?”

I will leave you with the words of Ms. Maya Angelou herself ……..

My mother said I must always be intolerant of ignorance but understanding of illiteracy. That some people, unable to go to school, were more educated and more intelligent than college professors.

art, inspirational, Uncategorized, world affairs, Writing

How Are You Today ? Just Four Words


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no estic bé
People are hungry. 
Níl mé ceart go leor
Children live on the street. 

Mir geht es nicht gut
The politicians play by their own rules. 
I au I Ka Moana
We've forgotten , "Do unto to others ."

אני לא בסדר
We turn a blind eye to those we could help

e kore au e ahau pai
The Golden Rule is not , "He who has the gold , makes the rules. "

Sina sawa
Love is not arrogant , or rude. 

P.S. The "four words" are , "I am not okay." in many different languages from around the world. 
 And he said unto them, Go ye into all the world, and preach the gospel to every creature. Mark 16 :15
Just something that was on my heart today.

		
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.

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 

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

Soak up the Sun…..(or maybe not.)

It’s the weekend! WhootWhoot! I hope you are enjoying yours so far.  Mine shall be mostly under the radar , I think. A trip to the grocery store, maybe. That’s about as crazy as I get these days  🙂  We are coming to the end of our ” 26 Days ” Series . We have 5 letters left! It’s been a pleasure sharing all of my experiences with you, and I hope it has been some help for you. So far our list has been………

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!

R. Research. Research. Research

S. Sorry …..You don’t have to apologize for being sick!

T. Talk….. talk to those around you about what’s going on.

That brings us to “U”  .  “U” is a very unusual letter when you think about it. If someone asks you to come up with a word that starts with it, you probably have to think for a few minutes.  But in fighting  lupus , believe it or not , there is a word that starts with the letter U that they warn us of right off the bat. And that is Ultraviolet rays. Any rheumatologist worth their salt will tell you either at your first appointment, or very soon thereafter, “Try to avoid the sun. ” “If you DO go out, wear long sleeves.”  “Get a good UV blocker and apply it generously. ”

I generally explain it to people as , “I’m basically a vampire. ‘AAAARRRRGH!!! The hideous light of the DayStar!!!!’  ))makes shrieking noiseswhilemeltingintothefloor((( that type thing”  .  They usually get the gist of it , when I explain it that way. And it’s basically true.

The sun can cause your autoimmunity to kick off, making your body attack itself. So sunscreen is your friend.

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I really like this one , for everyday. It’s light, but still provides 21SPF.

https://www.covergirl.com/beauty-products/face-makeup/foundation-makeup/clean-matte-bb-cream?&utm_source=google&utm_medium=cpc&utm_term=%2Bcover%20%2Bgirl%20%2Bbb%20%2Bcream&utm_campaign=Covergirl_Search_Brand+Awareness.BMM&utm_content=sHAOlfH0s_dc%7C115881177878&gclid=CLbk7-nB9tECFQaewAodwTgLyg

You can also buy sunblocking clothing; long sleeve shirts, hats , light jackets , etc.

Solumbra offers tons of choices in these areas

http://www.sunprecautions.com/

However you go about it, just make sure you protect yourself. The sun can cause your rashes, incidence of skin lesions, and other not-so-fun things to increase. Not to mention the fatigue that it can bring.

There are, a few things along the way that I have noticed about this.

One benefit of it I have noticed is, my skin is in great shape. Loads of sunscreen wearing, no sun -worshiping , has kept me wrinkle -free.

But there is a serious downside. I am , and probably forever will be, deficient in Vitamin D. I have to take loads of it , to keep my numbers up. This is definitely something that your doctors should keep checked, as well.

So there you have some of the long and short of sun protection. Do your own looking into what works for your skin type. What you like as a style, and what keeps you healthy.

Oh, and if I haven’t said it today…..I love you!! with all my ❤ and 🙂 and as always ((HUGS)) ~ Ruby J.

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

Love Means~

Good morning EveryBUDDY! I hope you are having a wonderful Monday so far . Mine is , as my Nan used to say, So-So. She would like President George Washington say, “Cannot tell a lie.” , so if asked would not say she was fine, but only “So-so. ” We are now only  7 letters away in our “26 Days Series” I hope you guys have enjoyed coming on this journey with me, and hope it has been some help to you. I have enjoyed writing it. If you’ve been keeping up, the list so far has been…..

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!

R. Research. Research. Research. 

So that brings us to………the letter “S”

girl-sorry

Such a tiny little word. Five little letters. And we say it all the time. With our illnesses or maybe even combinations thereof, we somehow feel that we must suddenly apologize . To our families, our friends, to our loved ones, to our bosses, to any and all things. It’s our fault. It’s our fault that we’re in pain. It’s our fault that we ‘re fatigued. It’s our fault that we’re nauseous. It’s our fault that we’re in the hospital. AGAIN. Okay. Let me just stop you right there. I will tell you what my husband tells me practically daily. JUST. STOP. “These things are not your fault. You have absolutely no control over the things you have NO CONTROL over. You need to stop apologizing. It’s a draining activity and we can’t waste our energies on things we have no spoons for. We did not ask to get sick. We did not ask to get dealt this crappy hand of genetic cards. But here we are. We cannot re-shuffle. We must play. So don’t apologize. Just BE. Be you. Be what you can, with what you have, where you are. That is definitely NOTHING to be sorry for.

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