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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Uncategorized, world affairs, Writing

Inauguration Day~

In any moment of decision, the best thing you can do is the right thing, the next best thing is the wrong thing, and the worst thing you can do is nothing.  ~ Teddy Roosevelt 

That’s all a man can hope for during his lifetime – to set an example – and when he is dead, to be an inspiration for history. ~ William McKinley 

You have to think anyway, so why not think big? ~ Donald J. Trump 

It’s always good to be underestimated. ~ Donald J. Trump

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I’m taking a break from my lupus series to say a little about today. Now I make it my habit to never discuss religion or politics , as I figure most people’s minds are generally made up one way or the other on those subjects. But , this year has been some year hasn’t it? It’s been a long year, and it’s been a historic year. When I was little , I was a huge history buff. I loved reading about the Presidents, about American history, and I actually liked watching things like, “The McLaughlin  Group”, “60 Minutes”, and watching inaugurations. When I was about 5 or 6 years old, President Bill Clinton, who was then campaigning to be Governor of my home state, Arkansas, came to my hometown, and I got to meet him. I told my Mom I wanted his autograph, and when she asked me why, “I told her that , ‘That man is going to be President one day. ‘ ” . I still have that autograph , which some might consider to be a dubious distinction these days I suppose. But suddenly , when Obama became President, the fun had gone out of it for me. The liberals seemed determined to make anyone who didn’t agree with them miserable. How dare you have a conservative viewpoint? It was almost as if they wanted us to be sorry for “being American.” And as if they were sorry for all the things that had made us great for so long.  We’re brash. What of it? We say what we mean, and I know lots of other countries considered that less than classy. We’re loud, we’re rowdy, we don’t mind sticking up for ourselves, and if we don’t throw the first punch, we’ll sure throw the last one. These things seem to bother uber-liberals . Then came the Obama administration. And we were made to feel like less than citizens, because we didn’t agree with his policies. It wasn’t okay to have a dissenting opinion. Because if you did, you were racist, bigoted, ignorant, yukking-it – up yokels. Then came the campaign race of the century. And we were made to feel even MORE like it wasn’t our country anymore. Hillary Clinton  thought we were “deplorable”, thought “what difference at this point does it make?” , speaking about the deaths of the  very people whose job it is to keep us safe. Lied so much that she seemed to think we all must have the I.Q. of a good sized cabbage.  Then came Trump. And he was ALL the things that I mentioned before, brash, said whatever he thought (for good or naught), he’s loud, he’s often rowdy, and doesn’t mind sticking up for himself. People said he’d never have a chance, they said he’d never get the nomination, they said no one would vote for him. Not in a million years. But the press, the naysayers, those “in the know” , didn’t count on how tired we were. Tired of being told that our opinions didn’t matter, because we were the “little people”. Tired of being lied to.  Tired of feeling like our America didn’t matter anymore. But he DID get the nomination, he DID get elected. And I’m watching the inauguration right now. And I feel hopeful. I feel like politics is interesting again. I feel proud to be American. I don’t know what kind of a job he’s going to do. No one does! And that’s the thing. THAT’S AMERICAN!!  Everyone should get the chance to dream big, and get the chance to show what kind of job they can do. Maybe he’ll be great, maybe he’ll suck.  But as of right now, I feel proud. And in the words of the newest President , “What really matters is not if the government controls the country, but that the people control the country.  And that the nation exists to serve its citizens. These are just and reasonable demands , of a righteous people. ” I pray it is so. God Bless President Trump, and God Bless the United States of America 

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About Me~, Uncategorized, Writing

Self-Soothing, Sweaters and Socks ~

Day Three ~ Comfort ~

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

A: Acknowledge and Accept, and

B: Breathe.

So in that same vein, today’s word is Comfort.

 

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Firstly, I feel like something HAS to be said, before we discuss today’s topic. We as chronic warriors seem to , as a whole, put ourselves last. We’re forever rushing around, trying to help every-one and every-thing.  In spite of our pain, or maybe BECAUSE of it we hate to see other people hurting, and will do everything in our power to make sure they’re okay. And of course it’s a wonderful idea to look after other people who are in our situation as well.  But the thing that HAS to be said is this, “When you have a chronic illness , sometimes you must put yourself first. ” I think we as lupie warriors are some of the kindest, most compassionate people there are, and sometimes we shoot ourselves in the foot that way. I’ve been diagnosed with lupus and its lovely cohorts for about 19 years now, and I still struggle with the fact that it’s okay to put my own name on top of the “Needs Help” list. That being said, here are a few things that I’ve found really make a difference in the Comfort department.

  1. Easy -on – the skin , clothing~ Such as leggings, and soft tunics.  Sweaters and socks. Now you might be saying to yourself that’s a splurge item, and you might be right. But to me, it’s definitely worth spending a bit more money to have clothes that don’t pinch, or squeeze you in the wrong places. They have tons of leggings to choose from at our local Wal-Mart, and you can’t beat them for the price. For tunics, or midi dresses to wear with your leggings, Amazon has so many to choose from you could have a different look every day!
  2. Sunglasses ~ prescription or over the counter ~ One of the jollies that lupus brings with it is, sensitivity to light. Light bulbs; incandescent and flouros both, along with of course , the sunlight , it can make you feel as though you even need shades indoors.  I like buying sunglasses at DollarGeneral, because very seldom do they ever cost more than $8.00 a pair. I have to wear prescription eyeglasses, so when I buy tinted lenses at DG, it’s good that they have pairs large enough to wear OVER my prescription glasses. I usually have anywhere between 3 and 4 pairs , at any given time. A pair in my purse, one for the car, and anywhere else I think I might need them. Doing this has sure cut down on the number of migraines, and eyestrain.
  3. Sunscreen~ Just as with our eyes, lupies have a “MEhhhh……..” relationship with the sun, concerning our skin.   The sun can cause our rashes to worsen, cause us to break out in hives, or even cause our disease to flare. Even “normies” need to find a brand that works for them, and apply it every day, no excuses! Skin cancer does NOT sound like fun , as one person dies of melanoma every hour.
  4. Medications ~ both prescription and over the counter~ There is nothing worse than having a flare , and NOT having your go-to medications on hand. When I am struggling with increased symptoms ;  nausea, vomiting, severe joint pain, body ache, and blood pressure difficulties seem to be the run-of-the-mill. I once had a rhuematologist tell me, “Never let your pain get so far past the level you can cope with. Because by the time it has gotten to that point, it will take extreme intervention to get it back to a manageable level. ” . And he was right. Everyday maintenance is SO much easier than damage control . Keep a tight record of your meds , so that a middle of the night pain cycle does not catch you unaware.

5. Mr. Sandman ~ And last but certainly not least ~  A quality mattress and pillows ~ Sleep is a HUGELY important piece of the wellness puzzle. The average HEALTHY person needs 8 to 10 hours of sleep per night, and we as chronic warriors will need more than that , as our bodies try to repair themselves. We will often sleep 11 to 12 hours a night, with a  couple -hour nap during the day.  Everyone’s wants and needs  in this area will be different. Maybe you need prefer firm, or super soft. They even have the SleepNumber mattresses now, so both parties can adjust the firmness to suit them.  This will of course be up to the individual person.  I myself,  always enjoy having lots of pillows for my side, as well. Fairly firm, I use two for my head, and I  can’t do without my body pillow to keep my old knobby knees from touching one another. (OUCH!)

These are just a few of the things that I practice , in order to make myself more comfortable , every day . If I listed everything I’d need a blog just for that! 🙂 And I’m sure there are things that you would add, that I don’t have mentioned here. The idea is, to make the list your own, with the things that YOU need to make your journey easier.

I hope today finds you doing the best you can, with what you have, where you are. With ❤ and 🙂 and as always ((HUGS)) ~ Ruby J.

About Me~, Uncategorized

Nothing On~

telly

I need to get out of the house. Being stuck in here unable to get out and do anything has driven me around the bend. It is official. You know how I know? I now pay 100 dollars a month for 400 channels of nothing. There is absolutely nothing on the television! And I like a wide variety of things, not just one type of programming. I like mysteries, crime shows, nature documentaries, kids programs, good movies, music shows, British telly, I will even watch hunting, fishing , auto auctions, home improvement, craft shows, Westerns, even financial reports! I like cooking shows, and even opera! But here is what was ACTUALLY listed on six channels in a row on my DirectTV screen guide. In order , they were:
I Like Killing Flies
Turkey Fried Easy!
Hairy Bikers
Best Vacuum Ever!
More American Eats
I Used To Be Fat

Really!?!?! I couldn’t help but laugh! I thought about, “What if aliens landed on Earth , and were going to try to learn about our culture , from just these six channels?!?” We like to kill flies ,while eating turkey, fried easy. All of our friends are hairy bikers, who used to be fat , from eating more American eats, but worked it off with the best vacuum ever! I’m sorry! I just couldn’t help it, and this was just too good to pass up . Here’s hoping you have a great day everyone, just don’t plan on finding anything worthwhile on television.