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. “

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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~, 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

It Ain’t Happenin’ ~

UGH. Double UGH. I’m miserably behind. Or maybe I’m just miserable, I dunno. I have struggled for the last two days to even stay AWAKE , much less find ANY type of motivation to write. I hate that . I hate it with the flaming passion of a thousand suns. I enjoy writing. It is one of the only things that I will actually do when all else fails. So when I cannot find the motivation to do it, I feel broken . I feel as if lupus has stolen that last little bit of something that makes me tick. If you know what I mean. So , double UGH. AGAIN.  Excuse the self-pity , there. Anywho, I’m back.  We are 14 days into our “26 Days” series and if you are keeping up, or just joining us the list currently hits at

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

So that brings us currently to ……“P”.   Which is actually another difficult letter . It’s something that so many of us struggle with and it adds to our illnesses because so many of us happen to be type “A” people . I don’t know if that happens to be a coincidence, a side effect, or just an anomaly. It’s PERFECTION.  And let me tell you first -hand , you are never going to find it. Especially with chronic illness.

 

 

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I was raised to keep very clean house. Things are supposed to be spotless, right? All the laundry put away, all the dishes done, all the bedrooms done, clean sheets put on, bathrooms completely done up, the works right? And there’s nothing necessarily wrong with that. If you’re in a shape to do it, and maintain. But let yourself get struck by never ending fatigue, pain that feels like you’ve been struck by a semi, your joints as if they’ve been somehow super-glued together, and suddenly even MOVING off the sofa, much less moving that laundry basket , it’s just not going to happen. Then your OCD sets in, the anxiety sets in, so the fatigue becomes even worse, the stress level ramps up, your lupus suddenly decides to flare to new heights and you’ve now escalated yourself into hospital -level chaos. Good show , old girl! Great times, what? So. Perfection. Is it actually worth all that?!? I had to decide. Are those boxes in the corner really causing anyone all that much distress? Or am I the only one who really cares. Does anyone really notice that there is a bit of dust on the knick knacks on that shelf? Or am I over reacting ? In the famous words of that Disney song……….”LET IT GO.”

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I promise, you really WILL feel much better. And if anyone says anything about it, let THEM go too. HA! 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, inspirational, Uncategorized, Writing

Kill ’em with Kindness (Well,you know metaphorically, and what not. )

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Top o’ the mornin’ to you all my spoonie warriors! It is once again dreary and grey , with that drizzle that seems determined to make everything a soggy mess. The world seems completed muted of color when it does that, which I think is why it makes me sad. I’m a great lover of color. Great , large , looming , vivacious splashes of it. But anywho, I digress. We’re supposed to be getting on with our “26 Days, 26 Ways” series . ( I apologize for the randomness of all of this, my husband will tell you I suffer from ADOS . Attention Deficit OOH! SHINY!!) So back on track I go. 🙂

So far we’ve got………..

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

Today’s fabulous letter is “K” , of course and it’s one of my favorite letters. Not really sure why, K’s just look elegant when written. Even in print. But “K” today will be for kindness .

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Firstly, you have to be kind to yourself. This is a very difficult thing to do , for most of us chronic warriors, as we are generally very “Type A” people , who almost always make sure that everyone, everything, the dog , the cat and the goldfish , get taken care of, before we take care of ourselves.  It’s a very hard habit to break. And of course , all those things DO need taken care of, that’s not the point. The point is, when was the last time you were genuinely kind to yourself?  Allowed yourself a break? Did something strictly for you, other things be hanged? Bet it’s been a while , right? But it’s so , SO important! We use all our energy, will-power, brain -power, and strength , holding other people together , that we forget that our bodies need rest, recharging, and yes, just flat out being kind to yourself. Buy yourself a little something for no reason. Spend 10 minutes longer in the shower. Say “NO” to something that really doesn’t interest you. It will be okay, I promise.  And when you’ve taken care of yourself , secondly comes being able to share that with others!

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When you HAVE that extra “oomph” from conserving your spoons, you’re able to give to other people. To truly listen. To have that time to write a friend. To visit someone on a good day. To use that cliche’ , “To pay it forward.”

Even the Bible tells us, Thou shalt love the Lord thy God with all thy heart, and with all thy soul, and with all thy mind. This is the first and great commandment. And the second is like unto it, Thou shalt love thy neighbour as thyself. On these two commandments hang all the law and the prophets.

Have you ever noticed that unhappy people , don’t really like themselves? They don’t know how to be kind to themselves, so they can’t give it away.  When we are truly kind to ourselves, we will have loads of kindness to share with the people we meet.  And to me, making someone else feel loved, or to see that smile when they feel that kindness, sometimes it’s just the medicine the doctor ordered.

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~, chronic illness, Uncategorized, Writing

Inch by Inch~

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I had a better day yesterday! Hooray! Right? Well, yes obviously. Any small improvement over the day before has to be something right? And I agree. I got up, got what I call “decent” clothes on (meaning clothes suitable for town) and went to the pharmacy. That was my goal . See, “G” for goal, lol. And that was it. Spoons depleted, body crashing, spending the rest of the day on the sofa, wishing for my body to decide to , “Dear God, just let me feel some sort of normal.

But we HAVE to have goals. I figured that out a long time ago in this journey. If you don’t have a goal set for yourself , by the end of the day it makes you feel very very depressed. Trust me. I have been WAY WAY WAY loooooooooooow down on the totem pole of , ” What did I even get DONE today?!?” And it’s not a good feeling. See , the key to that is , set a small goal. And NO goal is too small!!  Brush you hair! ( Hey , there are days when my arms are the equivalent of overcooked linguine, and just laugh at me when I say that. )  Finish coloring a picture in one of your books!  Make microwave food! For the adventurous , walk to the mailbox! Any little thing counts. I gave myself two gold stars for loading the washing machine, yesterday, so that was a big deal for me. Don’t let anyone else tell you that this kind of stuff doesn’t matter. They don’t know. There was a time I was wheelchair bound, and let me tell ya’ simply making it to the bathroom was a HUGE GOAL for me.

Feel proud of yourself no matter what your goal  is.  Celebrate you. And never , ever, ever let someone make you feel less. You rock warriors!! and in case I haven’t said it today, I  ❤ you !! With all my ❤ and 🙂 and as always ((HUGS)) ~ Ruby J.