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~, 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, inspirational, Uncategorized, Writing

Laugh Long…………and Prosper

 

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Happy day that’s the day before Friday, everyone! 😀  No, seriously. I quit really counting what day it is, unless I have a doctor’s appointment to go to , or someplace I just have to be. I remember when my Grandpa was still alive, he was a self-employed farmer, and he would always ask me, “Well, PeeWee, what day is it?” And I used to think it was odd, but now I know , he didn’t NEED to know. He could do what he wanted. He was in his 80s and could have cared less really. He’s on my mind today. It’s raining again, and I think if he were still here, he’d be itching to have his garden plowed up. Funny , the things that strike you sometimes. He always knew just how to make me feel better. One of the best things he could do was tell stories. And sometimes without even meaning to , make you laugh. So in his memory today,  our letter being “L” and all, I think we’ll have a post about laughter.

 

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So if you’re keeping up the list so far is…..

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

So we’re up to “L” or down to it, whichever way you want to look at it. There are actually a lot of good things I could say about “L” for us lupies. Things to do that start with “L” . Like lather in a luxurious bath.  Ladle liquid chocolate on literally anything. 🙂  Lay lazily on the lawn . But , hey , I had to narrow it down to one, okay? And I love to laugh. My Daddy is a huge practical joker, and also tells amazing hysterically funny stories. Like the time , he and his brother tried to catch a wild turkey using nothing but their hands.  ( They did, by the way. ) I got my Daddy’s sense of humor and my Mother’s good looks, so I think I did pretty well. Of course, mine and Daddy’s idea of funny is sometimes NOT other people’s idea of funny. I remember once when we were in the pre op area , not the actual rooms where they set you up with drugs, heh.  But the actual lobby thing. I was waiting to , of all things, have a hysterectomy. I was 24 years old. My Daddy and my husband came for backup. Well , Dad gets to telling jokes. Not rude jokes, ( he’s not like that.) But I mean, funny, split your sides, I can’t breathe jokes. He was trying to ease my stress , and make me feel better. If you could have SEEN the looks on some of the people in there, it was crazy. They acted like butter wouldn’t melt in their mouths.  As if, “How dare we be having a good time?!?”  , “This is a hospital, have some dignity!!”  Well, I hated to tell them, but if you’re in pre op, you’re about to lose your dignity pretty quick , anyways, when they put you in one of those “I Cee U” gowns.  🙂  But in all seriousness, I know things are tough in hospitals. Bad things DO happen there. But bad things happen everywhere. And if I had to be gloomy every time I WAS in the hospital, I’d have a pretty sucky outlook. If I was melancholy every time I felt bad, I would literally never HAVE a happy day. That’s what “normies” don’t understand. This IS EVERY DAY. From now til whenever. And I refuse to let it make me continuously sad. I want to laugh. I want my children to remember my sense of humor. I want other people to know it’s okay to laugh about this crazy thing we have going on . This crazy thing called life.  My Daddy has always said, ever since I can remember, “It’s ALWAYS better to laugh than to cry. ” So celebrate what you find funny! Watch the best funny movies, laugh with your favorite comedians, get your giggles in where you can. I promise , you won’t be sorry. Now, I can’t promise you won’t get some strange looks, lol, but that’s really their problem, isn’t it?

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

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

The Best Things in Life are Free~

Hey howdy hey, everybuddy ! I hope today finds you doing the best you can , with what you have ,where you are. I’m perched on my ever present sofa, under so many covers that I look like “Burritos Gone Wild” .  🙂 My chest has decided to pull its lovely asthmatic routine, which of course the damp weather doesn’t help. But anywho, what’s a gal to do, but suck down albuterol, pop a prednisone, and chug some cough syrup. Story of our lives, eh? But shall we get to today’s thought?  🙂

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

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

So that brings us to “H” . 

 

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Now bear with me, I have to kind of give you a little bit of background on this so it makes sense. I am a very affectionate person. I like people. ALL  kinds of people . The singularly different ones, the “something’s just a little odd ones” , the eccentrics, the painters, the artists the poets. The down trodden, the homeless, the not quite so clean ones.  I like being around them, talking to them, hearing their stories , and just being in contact with them. I also freely admit, “I am a “hugger”. I like  hugs. Hugs are good for you; and in turn , they are good for the person you are hugging. And they’re FREE!!  I mean, there’s research to back it up, and everything!! Here is a great article I found that explains it really well.

http://health.usnews.com/health-news/health-wellness/articles/2016-02-03/the-health-benefits-of-hugging

Here was one of my favorite sections of the article , that shows just how far a good hug can go.

There’s also some evidence that oxytocin can improve immune function and pain tolerance. A 2010 study from Ohio State University found that couples with more positive communication behaviors have higher levels of oxytocin and they heal faster from wounds. More recently, a 2015 study from King’s College in London found that oxytocin has analgesic effects, leading to a reduction in perceived pain intensity and lower pain ratings when participants were subjected to brief radiant heat pulses that were generated by an infrared laser.

So not only does hugging improve immune function, and pain tolerance, it JUST FEELS GOOD!  It’s a win \win , right?

So hug someone you love, hug your friends, your family, your children; I mean , I’ve been known to hug complete strangers who looked like they needed one. ( Of course, my hubs thinks I might be a little odd, but hey  😉

The world is a crazy, scary, uncertain place. People are dealing with all kinds of difficulties, struggles, and mental anguish. I would hate to think I could have helped someone , in a small way, but didn’t , because I missed out on a hug.

So rock on ! Huggers of the world! And if you see me, don’t be afraid to ask me for one .

Cause I love you! With all my ❤ and 🙂 and of course ((HUGS))!! 🙂 🙂   ~ Ruby J.

About Me~, Uncategorized, Writing

The Substance of Things Hoped For~

 

 

 

082259cecc6245411ec469c2cff7c222I was very , very ill yesterday. And literally slept from 7p.m. the night before, until 5 :30 p.m. last night. I don’t know whether it was a lupus flare, if I’m come down with any number of the bugs that have come through our area in the last couple of weeks, or if it’s just my body trying to recuperate over other things . What is that saying , “The best laid plans of mice and men often go astray. I had such huge plans yesterday, to conquer the laundry, the loads of school books that need to be organized, and the kitchen which definitely needs to be organized. But had no spoons to deal with. So I crashed. And I realized that todays word needs to be “Faith” . Now I know a lot people will see that and think , “Oh that’s religious, and you’re going to go off on some religious spiel. I make no bones about the fact that I am great believer in God, and in his teachings. But I know many other people of many other religions who follow other tenants. The point is, when you have chronic illness, you have to faith of a certain kind. Faith that we will make it one more day. Faith to conquer our fears, that we will be alright one more day. Faith in the science of medicine. And yes even faith in God. I honestly believe my faith has carried me this far. and I could not have gone alone. We need to have faith that one day things will be better. If we don’t the world turns out to be very lonely place that leaves us wondering , why are we bothering to try anymore. I refuse to allow that to happen to me. I honestly believe there are bigger and better things out there, and if we follow the voice of faith and love. We will find those better things. We WILL MAKE IT!! and the end results will be worth it. Never give up, never lose hope, and keep your faith with you at all times. It will carry you through. Oh and by the way, I love you ! With all my ❤ and 🙂 and as always ((HUGS)) ~ Ruby J.

About Me~, Uncategorized, Writing

Do What you Can, With What you Have

AAAAAAARRRRRGH! I missed a day!! UGH. I was on a roll , too. HEH. Well, what can you do. Sometimes your body just demands that you “lay low”, as my Daddy says. Anywho. I guess that makes today the letter, “E” right? I feel like we need a Muppet saying, “This was brought to you by…………”  🙂

 

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So today’s thought is , “Exercise”. Now before you get in a bunch, and say, “I’m disabled! I can’t exercise!” Well obviously I don’t mean that you will do the same things that “normal” people will do. My body is totally not in the shape it used to be. Before I got ill, I was in great shape. I worked two jobs, and was physically in the best shape of my life. Now I am lucky if I can walk down the hall , without being winded. But I DO walk down the hall. When I had the stroke, I was wheelchair dependent. That was very difficult for me. And I swore that if I ever regained use of my legs, I would do all I could to keep it that way. So of course I’m not out running marathons! But I DO stretches, yoga , and when the weather is good, I walk. Maybe I can only walk a hundred feet. Or to the end of the driveway. Some days my body is so exhausted that all I can do is lifts and stretches while I’m laying down. But I make my body do something. And be proud of what you CAN do! Don’t compare yourself to someone else. Don’t feel bad, that you are “only” stretching , or “only” walking a hundred feet. Any effort is better than nothing. We are strong, capable people, who are absolutely doing the best we can , with what we have. And that’s all ANYONE can expect. I am so proud when I see my fellow lupies posting pictures of their everyday triumphs. You guys rock, and my world is a better place for knowing you! We make every little thing count, and I think other people could definitely learn from us. Oh and if I haven’t said it today  , thinking of you with ❤ and 🙂 and always ((HUGS))

One step at a time! ~ Ruby J.

About Me~, Uncategorized, world affairs, Writing

Thirty Eight and Counting

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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?

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