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~, Uncategorized, Writing

Scrambled~

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Ferris wheels. I used to really , really love Ferris wheels. And roller coasters. I loved the up and down craziness of riding The Scrambler. The Flying Swings. Amusement parks were a ball, and I couldn’t wait to go every year with my Daddy to the company picnic to the big park and ride with him . I went with my friend James and tried to get him to go on the double looped Arkansas Twister with me, but he just stood on the ground firmly  in his wore out cowboy boots and swore that ‘s where he’d stay with his eyes closed , and pray until I was back on the ground  where I belonged .  I used to love to go to Hot Springs , Arkansas and ride the elevator up  Mountain Tower and stand 216 feet above the Ouachitas and look out over the heights and feel thrilled.

But then one day, I got very  sick. I had been pregnant, and I lost the baby . We found out it was because I had lupus .  My body turned into this alien thing that I didn’t recognize. It BECAME a Ferris wheel I couldn’t get off of. Around and around I went. I was on The Scrambler, screaming for the operator to let me off. I’m on the Arkansas Twister , but I’m stuck in between the loops, where there’s no solid ground for me to get back to. I know James is praying for me  somewhere, but I can’t get down again. The elevator refuses to take me off the Tower anymore. It’s been a long time since this horror park first started . I had a few years where I was lucky , and had a period of remission. Those were glorious times.

But the roller coaster has started back up again . I’ve had to go back on the steroids , the anti malarials, the high level Vitamin D, the major pain killers , and spent most of this week in either a state of insane insomnia, crazy fatigue, with my mouth covered in burn-like ulcers, my stomach in  toe-nail churning nausea, or  my body bent over in mind-blowing joint pain .

I no longer go to the “real” amusement park. I don’t find anything amusing in that anymore. My body is “Scrambled” enough. I am starting up the Mountain again, with a new rheumatologist. The one plus is , I really like this one, she seems to be really educated, and very compassionate. I can only pray that the view from the top of the Tower is worth this particular  ride in the elevator .

About Me~, Poetry, Uncategorized, Writing

Discarded Treasures ~

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I approached quietly , and left

a small piece of my heart,

on the  park  bench.

As if somehow leaving it there,

meant I was waiting for the day , no , not even the day,

my life!

to start,

for some permission.

Would he see it?

Would he care?

Or would it simply be one more

discarded, tumbled, forgotten grubby lost unknown treasure. I watch with all the hopes , despairs, confusions, joys, consternation…………. Abruptly  , the man who lives in the apartment above me  grabs my arm , and with  sudden fervor

pulls me down from my window perch , where I watch so anxiously . Racing , with a strength I would not , no , could not have thought his own bird-like body could possess,  hurriedly we go, skipping first one step , and then two steps at a time ………..and then we are there.

The bench.

The boy.

And me, the  girl. I am standing , out of breath, trying to think of the words to explain .

The painted rock.

The old man.

I am only a child  here.

My words are jumbled.

There is  nothing  for me to  say, it is  just a grubby , lost unknown treasure, I mumble.

It is okay, the boy  says. The old man is his uncle. The boy  is NOT new here, the old man says,  he has  seen that you like books, and walks. And benches. And wanting  to learn about quiet things, like that which is  discarded, and hopes, and unknown treasures. And  in time, together , you   will  think of the right words to explain.

About Me~, Uncategorized, Writing

One for Our Column~

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Yesterday was such a lovely day . I woke early and the world woke  with me , with  all the hints  that everything good might happen. My body even tempted me with promises of less joint pain, and energy enough to take a small walk down our lane into the sun-tinged air. The wee red fox who calls our farm home greeted me shyly on my way back as if to say, “Happy to see you out today! ” The birds went about their daylight  business looking for their breakfasts and for one golden moment I had a dawn  that reminded me of what my life had been like so many years ago. I did laundry, straightened my kitchen, and walked barefoot through my tomato patch as I had  done so many times as a tomboyish 10 year old , and my Grandpa was one row over again urging me , “Make sure you get them tommytoes off the bottom vines  there, PeeWee!” . I wish I could have captured that moment in  a mason jar, as we used to do the fireflies , to open today , for sometime in the middle of the night ; the tordol, dexemethesone combo wore off, and the lupus pain came rushing back in , with all the fury of a caged beast  , seemingly  all the more angry for having been denied its one day. I want to say I’d never had that one moment , that one day, but if I did  I’d be lying. If we are all honest with ourselves, we would trade a hundred days , a thousand days , and we HAVE traded them, to get that ONE . That ONE magical day that brings back those gilt-lit days of joy, laughter, memories, barefoot -garden days, sun-warmed beach days, child-filled swing -in-the-park -days, those days where we shake our fists at lupus, at chemo, at whatever has stolen our glitter from our lives, and say , “YOU DIDN’T GET THIS ONE!! THIS ONE BELONGED TO ME!!”  , just so we can  put a chalk-mark in OUR column , no matter how small, and continue on.

About Me~, Uncategorized, Writing

Wings~

 

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Happiest of Tuesdays to you EveryBUDDY! I hope today finds you doing the best you can with what you have. Sometimes that’s all we can do. The best that we can. Sometimes not even that. Sometimes we can’t even give it our all. There are days we can only give it our “some”. And the perfectionist in me is learning to be okay with that. I am very blessed in that I married a man who is perfectly okay if the house is not spotless every day. I do NOT have to look like a supermodel when I roll out of the bed in the mornings. ( Thank the Good Lord above. ) He met me when I was already very ill , and married me anyway. Needless to say it pretty much all went downhill from there. If angels walk among us, I’m pretty sure he hides his under his grease stained overalls. I read  very frequently a question that gets asked on my lupus page, from many of my followers, who are just beginning their journeys with this insidious disease, the question I most dread hearing. “Does it get better?” They can usually mean a few things by this. Sometimes they mean the treatment they receive from friends and family members. As in , “Does the treatment from them get better? Will they understand? Will they be more compassionate and helpful?” I wish I could say yes. But mostly , sadly, the answer is “No.” People , in large part, don’t “Get it” unless they GET IT , and that is something we don’t really wish on anyone. Sometimes they mean , “Will my illness get better?” And the answer to that is a resounding “No. ” as well. Oh how I wish I could say, “Oh yes! The doctors are so helpful. The treatments are wonderful. And the support is great. You’ll be back to yourself in no time. ” But it’s just not true. The best I can wish for them is a period of “remission” a short respite of ease . Now for those of you reading this thinking, “Well aren’t you being a Debbie Downer today??” I don’t mean it to be! I really mean it to be positive, so that when you see someone WITH a disease like we have , you will TRULY understand how HARD we fight to STAY positive. We must make up our own minds EVERY SINGLE DAY that we are going to live to see above the trees.  EVERY minute to smile through horrible pain. Our bodies literally hate us. And no amount of King’s Men can put our Humpty Dumpty’s back together again. So we must make the best go of it that we can, and oil our flying machines.  If we seem triumphant over some small thing, please remember that maybe even walking down the hall to our bedroom was like a 10K . Standing long enough to cook spaghetti was like a marathon. Taking one of our meds off our list , is relative to soaring over  Everest. These are the measures we count our lives by. So please. Don’t take offense if we don’t seem like “our old selves”. It’s been a long , long time since some of us even remember what that was like. Smile with us in the now. You don’t have to “HAVE IT ” to “GET IT”   🙂  Our bodies might seem to  be falling apart, but our spirits are still the same on the inside.  The wings might be bent, but not broken, at least, not for long. Come fly with us.

About Me~, Uncategorized, world affairs, Writing

What’s It Really Worth?

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A million dollars. Say someone walks up to you and just gives you a million dollars . No strings attached. They don’t want anything from you, you don’t have to do anything for it, they don’t need anything from you, they just walk up to you , hand it to you , and walk away. What would you buy? Do you immediately know? Do you have a list? It’s funny isn’t it? Suddenly you have all this money , it’s yours just to blow ! I’ve had this very scenario in my head a dozen times. And you know what? I can’t think of a SINGLE thing I’d rush out and buy. Not one.It just suddenly doesn’t seem all that important anymore.  My home is paid for. It might not be what anyone else would call a mansion , but I’ve never cared about that. The land it sits on belonged to my Pappaw , who thought it the most beautiful spot of land in the world, so beautiful that he died here, which makes it worth more than money to me.  My van is paid for. It’s not new, but it goes up and down the road. That’s what cars are supposed to do , right? Take you up and down the highway? I’ve got clothes to keep me warm, clothes to keep me cool , blankets to cover up the beds, food in the icebox, a couple of old dogs to bark if company comes. My Momma and Daddy are still living, right next door.Some things money just can’t buy. There’s no price tag you can attach. To happiness. To the people you find it with. Or the memories you made with them.  I find it funny sometimes to see all those people in the magazines and on the television shows talking about how their houses cost more money than most of us will ever see in our lifetimes. More money than our entire state budgets even. Then you read that they get divorced, remarried,  and all the unhappiness that follows them. You wonder if maybe they wouldn’t be a little better to follow the advice of John Anderson in that old song “Black Sheep”.

My daddy was a brakeman on a highball traveling train
Mama she raised four little children and the family had a good name
And papa and mama wanted all for us they never had
Big brother little brother sister too none of them turned out half bad
‘Cept me I’m the black sheep of the family

Big brother went to college and became a doctor man
I guess he makes about a million dollars a year off the folks on insurance plans
He’s got a big long Mercedes Benz and a house overlooking the town
He sits in his Jacuzzi and he watches the sun go down
And he feels real sorry for me, I’m the black sheep of the family

Yeah I drive me a big ol’ semi truck I’m makin’ payments on a two room shack
My wife she waits on tables and at night she rubs my back
And I tell her what my papa said to my mama when he got off the highball train
Wake me up early be good to my dogs and teach my children to pray

Little sister married a banker yeah he owns a country club
He bought her a big ol’ racing horse and a funky lookin’ little dog
He buys her big rings and diamonds and a brand new Japanese yacht
Yeah, they like to get together and talk about all the things they’ve got
But they never mention me, naw,  I’m the black sheep of the family

Yeah, I drive me a big ol’ semi truck I’m makin’ payments on a two room shack

My wife she waits on tables and at night she rubs my back

And I tell her what my papa said to my mama when he got off the highball train,

Wake me up early be good to my dogs, and teach my children to pray.

I beg ya woman, wake me up early , be good to my dogs, and teach my children to pray.

 

Seems like maybe we could all do worse than to live our lives a little more like that.