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~, 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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About Me~, Poetry, Uncategorized

Night Things~

fabwhiteowl

~ Just wondering~
What happens in the tree!
I’ve had the strange sensation,
thoughts swirling in my head.
Like , “Where do fireflies go at dawn?”,
“Where do they go to bed?”

“What do owls dream about, ”
“while sleeping in their tree?”
“Do they dream about their night flights”,
“and where the mice might be?”

“What fancies do the small bats see,”
“what memories do they keep?”
“I’d like to listen to their thoughts,”
“when they are fast asleep.:

Where might we all travel?
Which place would we be?
If we could know the night owl’s thoughts,
while dreaming in the tree.

Ruby Jeanette Woods

About Me~, Poetry

Arrival and Inspiration~

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This is a poem I wrote today after seeing some birds outside my window. I got to thinking about how optimistic they are in the face of how the weather still is outside today. It is beautiful here today, but still chillingly cold. The sun was out, but the wind was biting. The birds , however just looked so very happy to be out in the gorgeous redbud tree. The buds of the tree themselves were totally unfazed. Just brightly purple ,contrasted nicely with the red of the birds, who seemed so contented to just see spring finally arriving after the winter of snow and ice, that it was hard to fault their joy. It was beautiful to watch them enjoy the sunshine, and eating the seeds that they were finding. I was almost envious of their joy. It was very inspiring. Just a little something I wanted to share with you . Something that caught my attention today. Hope this finds you feeling creative , or inspired by something, that maybe you haven’t really noticed before in your life, or that maybe you have, but noticed it in a new way. ~ Ruby Jeanette

Uncategorized

The Mouths of Babes~

I had a really interesting conversation with my boys a while ago. It was quite eye opening as I guess I never really thought about what great insight children can show us sometimes. Like all boys, they are fascinated with shoot em up games, and playing army or “war”, where of course , no one really “dies” , but always lives to fight another day and be the hero. But while we were watching the History Channel the subject came up about nuclear bombs. “What are those?” and “Why are they different from a “regular” bomb? ” This was a harder subject to explain ,than I thought. We don’t really let them watch violent television, or play graphically violent video games. They get along really well together, and very seldom ever fight. They’ve only ever come to blows maybe twice in their whole lives. So it’s really hard to explain the whole concept of war, and nuclear bombs and all that. Especially trying to convey the devastation that something like that causes. I mean , their whole attitude was , “How can something be so bad that you have to use nuclear bombs on someone else? Why didn’t they just try to talk to one another? Did their moms not make them work it out?!?”. Oh , if only the world saw it that way ! I explained the best I could, although I ‘m sure they still don’t really understand. And maybe that’s not a bad thing. Maybe , even sometimes as adults we could all take a step backwards when we have a conflict and say, “Is it really that bad? Or could we maybe work it out by talking to each other?”

Uncategorized

Food for Thought~

Did you ever wonder?

If practice makes perfect, and nobody’s perfect, does that mean that no one is practicing?

After eating do frogs have to wait one hour before getting OUT of the water?

Before they invented drawing boards , what did they go back to?

Can good looking Eskimo girls be called hot?

Could a person get addicted to counseling? If so , how would you treat them?

Did Adam and Eve have bellybuttons?

How can a slim chance, and a fat chance be the same, but a wise man and a wise guy be opposite?

How can something be NEW and IMPROVED? If it’s new, then what is it improving on?

How can you chop down a tree, and then chop it up?

How do “Keep Off the Grass” signs get where they are?

Just for laughs! 🙂

Poetry

The Night Thoughts~

Just Wondering~

What Happens in the Tree~

I ‘ve had the strange sensation,
thoughts swirling in my head,
Like “Where do fireflies go at dawn?”,
“Where do they go to bed?”

“What do owls dream about,”
,”while sleeping in their tree?”
“Do they dream about their night- flights,
“, and where the mice might be?”

“What fancies do the small bats see, ”
“what memories do they keep?”
“I’d like to listen to their thoughts,”
“when they are fast asleep. ”

Where might we all travel?
Which places would we be?
If we could know the night -one’s thoughts,
while dreaming in the tree.

Ruby Jeanette