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~

Acceptance~

I might as well be myself. Everyone else is taken. ~ Oliver Stone

Ever hear that saying, “You can’t be all things to all people.” ? Well, as I grow older, I am learning that it’s very true. You can’t even really be all things to some people. As the years go by, I ‘m beginning to think you can’t even be all things to ONE person. That kind of limits your world and theirs. And it’s a way bigger job than one person could fill. If you are depending on another person to make you happy to that degree, I’m afraid you will be disappointed. Deeply. It’s just too much pressure. No one can live up to all our expectations without failing. We are after all , just fragile human beings.
A big part of expecting someone else to make you happy is that it involves changing them on some fundamental level. It’s a sad truth. Sometimes we become involved with someone, for certain reasons, and then as time goes by, we force them to change the part of themselves that attracted us to them in the first place. We abrade the edges of the square peg to better force it into our round hole. And then find we don’t like the individual who comes out the other side. So, is that our fault or theirs? Maybe a little of both. We should not be so rigid in our ideas of what we want, and they should not be so flexible as to lose themselves that completely in another person.
So when you find yourself in one of those situations, ask yourself, “Is this carrying me closer to the person that I want myself to be, or further away?” . Sometimes we just have to make a stand, and say , I can’t be all things to all people. I can only be ME.

About Me~

The Root of the Problem~

Money. They say it makes the world go ’round. They say you can never have too much of it. And people generally DO use the expression money is the root of all evil. But did you know that saying is actually a misquote? The original , accurate saying is from the Bible, and it doesn’t say that money is evil.
Money is only an inanimate object. It can’t be inherently evil or good. The actual verse from the Bible states this “For the LOVE of money is the root of all evil.” (emphasis mine.) So think about it from that perspective and you get a whole other idea of what makes the world the way it is. It really is true. What makes people greedy? The love of money. Why do they cheat, rob, steal, and lie to one another? The love of the green. Why do they leave their current job for another one? Cold, hard , cash. Why do people want to be famous? Singers, movie stars, reality stars? The millions of dollars that come with such a spot.
In today’s society it seems as if everyone wants to be famous. You see these talent and voice competitions, and the lengths people will go to , just for their chance at “the big one.” Willing to change their lives, personalities, and even uproot their families, and for what? Money.
As the band Nickelback so eloquently puts it in their song “RockStar” , “I’m going to trade this life for fortune and fame, I’ll even cut my hair and change my name. ”
I guess I never really cared much for money. I mean , don’t get me wrong, it’d be great to have a ton of cash just to spend on my kids, or to take an awesome vacation. But, you can only spend so much of the stuff in one lifetime. Think about it, even 1 million dollars is really a gob of money! Unless you bought a million dollar jet, or farm , it would be difficult to go through a million dollars in your whole life. Money should only be a means to an end, not the end itself. It should be used to provide necessities, spoil our children and grandchildren, and help those with less than we are blessed with. Money itself is not an evil idea. But some blessed with an abundance of it, sure have used it for evil purposes.

Bottom line is , you can’t take it with you. Even if you could, there wouldn’t be anything to buy with it when you got there, lol. 🙂