About Me~, chronic illness, humor, inspirational, Uncategorized, world affairs, Writing

Against the Flow ~

 

fishfilmstrip

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 

1c0492cdb4998e42149b2f25058a0c1d

Advertisements
About Me~

Sweet Home~

BeFunky__sweethomecollage.jpg

An old block building stands there among the pines. Just off the road. Just next to a little old country church. Painted white, with red gingham curtains , it sits quietly most days. You’d pass by it and think , well that doesn’t seem like much. You’d be wrong. It ‘s seen weddings, baby showers, dinners for passings of loved ones. Family reunions, Ladies club meetings, political get togethers and just general gee hawings. Today it saw the Spanhanks Family reunion . It’s been a long time since we’d all gotten together. For some of us it’d been years since we’d seen each other. Hugs were given , people reintroduced, babies kissed, food eaten , lies told , and laughter heard and rung out in the hall. The old piano that has sat so long in the corner , you could almost tell it was glad again to hear the voices of people in the room. Granny Jo , our matriarch was in her element today , making sure everybody had food. “Did ya get ya somethin’ ta drink” “There’s plenty more puddin’ over there!” Uncle Charles has finished up his dinner and has got his toothpick outta his hat and is chewin’ whilst tellin’ a tall tale of some sort. Uncle Ray has got his hands full of grandbaby while trying to eat at the same time, but if anyone can handle that , he can , he has has plenty of grandbabies to practice on. Things get quiet for a while, ’cause it’s hard to eat with your mouth full ya’ know. But it picks back up again when people head back for dessert. There’s coconut pie, and pumpkin, and 7-up cake which Granny makes every time. I tell ya’, if you left here hungry , it was your own fault. People start to round up, and head out to get a dip a’ snuff, or smoke them a little bit of a cig. The kids want to run off all the pie and caffeine they consumed. The ladies start to clean the kitchen up a little, and you can hear the old Sweet Home Community Building smile, because it knows, it matters after all.

About Me~

Not Just a Number~

numerology-number-27

You know there are just some people whom you meet in life , that the minute you meet them, you know that you are going to be friends. You’ve heard people say it, the saying is “You click.” They get your jokes, and you just carry on conversations , not even realizing that you have things in common , because the visits just flow so smoothly, it’s like you’ve been friends for years. I’ve not been blessed to meet very many people like that, but was just lucky enough to meet one not very long ago. I like having friends, and wish that I had more close ones. But having a close friend can be a lot of effort. Or at least if you do it well and honestly. The true give and take of caring about another person and their family life is not something you take on lightly. I think in today’s FaceBook world, when people say, “Oh, I’ll “friend” you , it has kind of lessened the meaning of that word. But to really be someone’s friend means a lot more than just being a number on someone’s “wall” Or to me it does. When I am your friend, really your friend, you can count on me to really be there for you. Maybe I won’t be that “close” friend with everyone , but I’ll be more than just a number or a name on your wall.

About Me~, Uncategorized

A Butterfly to a Wolf Fight~

BIGBADWOLF

I’ve been having a lot of interesting conversations lately on some of my lupus pages. Our current thread of conversations started with rashes. (Having a chronic illness leads to some weird conversation threads….) See the name lupus is generally thought to have originally come from the 13th century and stemmed from the red rash it leaves on the sufferer’s face , which some physicians seemed to think looked like the bite of a wolf. Now in this day and age of political correctness we refer to it as the “butterfly” rash so as not to offend anyone.( Another term for the rash, the medical one, is malar rash.) Well, we talked about butterflies for a while, and some of us do get the butterfly rash, and some of us don’t. ( I do.) But one of my friends, new to the lupie world, asked a very good question. She wanted to know , how come so many of us post butterflies for our support and conversation pages, when our disease is named for the wolf? I guess it kind of took me aback. I know the reasons we post the butterflies. They represent change, as in constant change of the disease we are fighting every day. They represent strength, the strength it takes to struggle and emerge from their cocoons in order to fly. The fact that though their wings look quite delicate , but are actually a lot stronger than they seem. And of course , they’re pretty. They also represent new life and hope in many faiths and religions. But then I began to wonder if maybe we hadn’t given the wolf a bad rap. I myself have had such a severe case of lupus that thinking of the wolf as my friend has not been necessarily my first thought in this fight. But perhaps I’ve had one of my best players “on the bench” .Maybe I’d been bringing a butterfly to a wolf fight so to speak. Wolves are scary looking animals. I mean they’re huge for one thing! , weighing anywhere from 80 to 140 pounds. They are fierce hunters , known in packs to take down even the North American bison. So if you think about having a disease named for something so aggressive , that can be pretty intimidating! But then I decided to do a little more research on it. I said to myself if I can use the wings of the butterfly to my advantage in my psychological war, I’m going to get some of this lupus vulgaris fierceness for myself too! Wolves as symbols are part of many cultures from all over the globe , but I suppose the most notable of them are the North American Native peoples. Just reading through the stacks and stacks of information on their histories could take a lifetime to learn about their amazing stories, but some of the ones that stood out to me the most were the ones that talk of the wolf as standing for “teacher”, “guide” , “strength” , “unafraid in the face of death” ,but also possessed of deep faith and profound understanding. I was very surprised. I think maybe people see the images of the wolf devouring its prey and think only of their bodies being consumed by this hideous alien disease. After doing all my reading today, I’ve decided to fly into battle on my butterfly’s wings but with a pack of wolves for backup. I think I can use some more teachers, guides,and warriors with strength unafraid in the face of death. Not just fierce hunters but possessed of faith and understanding too. Cause after all, when you’re fighting for your life, why leave your biggest, scariest looking soldiers at home?

About Me~

Bosom Friends~

You were the Diana to my Anne. Even though the hair colors were the other way around. You with the red, and I the raven . I was the one with the great ideas, leaky rowboat, anyone ? I was the one who could never turn down a dare. Walk a ridgepole on a roof? Ride standing up bareback while galloping? No problem. I was the tomboy with the frogs in coffee cans. You were always the voice of reason. As in , ” I don’t know about this!” “Are you sure this is a good idea?!?” But you never squealed on me, even though maybe sometimes you should have. You were the one who always knew the right and proper things to say. I was the one who blurted out a totally inappropriate (albeit truthful!) comment. I would definitely have been the one to talk you into jumping into Great-Aunt Jo’s bed in the middle of the night. We’ve had some of those not-so-bosom friend times, though. My fault, your fault, didn’t really matter. I always looked dreamily across the pond , writing melancholy poetry wishing I had taken a lock of your hair to weep over. But for all that, we are and always will be sisters. The Red and the Raven, with all the inside jokes that only we will ever know. And I can’t say that I can imagine anything better.

About Me~

Real Life, Virtual Reality, and That Whole FaceBook Thing~


I have never been a technologically savvy person. I don’t know how to troubleshoot electronics beyond the basic stuff. My skills are limited in this area. But today I got to thinking about what I ‘ve learned about life , from being on FaceBook. I think maybe there are a few lessons we can all take away from this particular virtual experience. And maybe , just maybe, a few things are better left in your own private world, and NOT in the virtual domain. On FaceBook, and in life, I’ve found the following things to be true.

1. Some people will “like ” you no matter what. ~ Doesn’t matter what you say, or do , they are the people you can count on . To be there either virtually or physically to support you. They always have a kind word, or encouraging thought to pass along.

2. Some people will never “like” you no matter what.~ Doesn’t matter what you say , or do. These people will never be satisfied with your life, or your decisions. They troll your statuses just to make your life more difficult, or so it seems.

3. Some things you “post” are going to make people unhappy. In life, or on FB, your thoughts and actions are never really your own. They are hashed and rehashed by everyone, who seems to think you could have done it differently, better, easier, quicker, etc. , etc. My rule of thumb for this is , either don’t post it, or don’t care what people say , if you do post!

4. Your friends list is not a marker for how well liked you are, or even an indicator of how many “real” friends you have. I have 300 and some-odd friends on FB. I know them all, but, I’m not intimate friends with all 300 and some of them though. I don’t care what people say. You CANNOT be REAL friends with 300 people. It’s just not possible! You can not have enough emotional or physical health to see that many individuals through on the scale of true friendship.

5. And finally , on FaceBook and in real life, some things are just better left unsaid. I mean seriously…..do I NEED to know that you got drunk and passed out last night? Do I want to know that you hate your ex girlfriend so much that you posted an incredibly awful post about her? Do I have to see the pictures of you with your head lolled over the porcelain throne over the weekend? NO. I don’t . I don’t want to see the pictures, I don’t want to hear about it. I don’t want to know. I think some things should remain firmly tucked away in people’s private lives. And what gets me is that it’s men posting the “drunk” photos or the “I hate my ex’s guts” rants. Not women. MEN! It seriously makes me want to revenge post pictures of women in childbirth. Graphic pictures of women giving birth. Bet that would make them think twice. Then when they say “Want to see a graphic picture of me intoxicated?” , I could say ” Want to see some graphic pics of women giving birth?” , “You DON’T?!?” , “Yeah, well, I don’t want to see yours either!”

All in all, the virtual world is a pretty cool place. I like hanging out here. But , some things should just stay virtual. As in ……virtually invisible…..:)