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

“Anybody Know the Number for “911”?

“Why would you even say that?”

“I don’t find that funny. “

“You shouldn’t laugh about chronic illness.”

“If you do that , people won’t take our issues seriously.”

“You really offended me by making that comment. “

These are all things I have have said to me, by people WITH chronic illness and even people WITHOUT.  Apparently, if you suffer from a disease, you get your “humor card” taken from you , and it is now NOT okay for you to be a happy person, or find any kind of joy in life.

So , I’ll start this next paragraph by saying, lest you think I have no right to speak on this matter, that my diagnoses in order are, Systemic lupus , heart failure,  Sjogren’s, Raynaud’s, POTs, dysautonomia, and EDS. So trust me, I have been around the medical merry-go-round. I many times have  pain that would put most people on the floor, have had so many surgeries, that they don’t give me enough lines on the medical forms, and so many allergies that they no longer even put them on the ER bracelets. I just get a big red one, that says, “See List”.  I have been sick since I was about 7 ( I was so sickly that my Grandpa called me P. , short for PeeWee) , and VERY ILL since I was 14. I didn’t get diagnosed until I was 19, so I had five years of basically every doctor saying to my parents, “She’s just lazy. ” and “She’s just wanting attention. ” So you develop a thick skin, and I developed  a sense of humor from the craziness of it all.  Sort of like OR doctors, ER doctors, etc. That gallows  humor.  I CAN and DO find the funny in just about any situation.

I’ve learned over the years that there are two types of people, when they find this out about me. They either “totally” get it, and love that I make a joke of it, or they are so offended they can’t take it.

But my question to them has always been. “Well what SHOULD I do? Should I be this joyless, soulless person, who is angry about things I can’t change or control?  Should I rail against the Doctors, the nurses, the techs and even God?” If your answer is “Yes!”, then my reply would be, “And what would that help?”

Rather , isn’t it better to find joy where you can? To laugh over the quite frankly ridiculous things that become necessary when you’re stuck with a lifetime illness?  Isn’t it better to be positive?

I am sorry if you think it’s wrong somehow , that even though I have more issues than you can shake a stick at, that I am happy anyway.  I am sorry if you find it strange that I am able to laugh , not BECAUSE of how things are, but IN SPITE of them.  And to be quite frank, and  I am sorry that even though things are hard, that you have no way to smile.

But I am NOT sorry that I AM able to find joy. I will not  apologize for coping with the circus that is my life , with humor.  ( P.S. Below, find an attached article about the effects of gallows humor and how it helps us cope in stressful situations. ) https://meded.duke.edu/practice/wp-content/uploads/2014/07/Gallows-humor-in-medicine.pdf

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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.

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.

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. “

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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