About Me~, art, inspirational, Uncategorized, world affairs, Writing

How Bizarre~

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The beautiful is always bizarre.  ~ Baudelaire 19657041_1349803748431210_6828812241786549423_n

I’ve never BEEN normal.   It was a certainty in my bones , a knowing even. An intrinsic feeling , yet not a difference that I felt was a problem. I didn’t SEE it as being a difficulty. I knew I was not like other people. I don’t say that as a form of braggadocio or as a way to say I was better or somehow on another plane. I came into this world , a wild animal. For most of my early years I refused to wear clothes, driving my mother to insanity. I thought going about skyclad was the best thing in the world.  When she DID manage to keep me clothed, it had to be boy’s clothes of the most ragged variety imaginable. Jeans, cutup, cutoff, dirty, t-shirts the greasier the better. My Dad’s castoff welding hats and goggles. A pair of corduroy Levi knickerbockers. Cowboy boots with the soles worn completely through. A set of leather chaps that a friend of mine had outworn. I spent my days out of doors ;climbing every tree within 10 miles of my house. Skinnydipping in the Little Missouri river until I was sunburnt to the color of red ripe watermelons we gommed from Granny Jo’s garden in the evenings.  I don’t know how my mother kept from killing me in those years; I never shut up, when I WAS home, which was seldom, I despised school work; what was I going to need all THAT useless information for anyhow, I wanted to be any and everywhere besides chained to that drudgery . I brought home any and every creature I could find , that slithered , crawled or flew, and was sure that both my mother and sister would find homes for them, and be just as fascinated as I was. (  I was wrong on both counts many times. ) Come to think of it, I don’t know why my SISTER didn’t kill me in all those years. I’m sure she had just cause. She was all the things I wasn’t . She was clean. She was a whiz at school, quite dedicated to it actually. And she actually kept her clothes ON. She swore on many an occasion, that “For the love of GOD, Nette, you are adopted. I swear. You actually belong to some nudists somewhere!!”  Heh.

I guess , to me, life just all seemed so bright, amazing, full of things to see. It still seems that way. Everywhere I go now, I still wonder why people want to be “normal” . And the funny thing is they struggle so hard to do this thing they call “fitting in”. What IS that, anyway? I had an interesting conversation with my niece, just the other day.  I was asking her , about a certain person , “Why is he dressing that way?” ( Meaning goth, emo, shopping at HotTopic, you know the whole ‘look’) She said , “Well, he’s making a statement I guess. Trying to stand out. ” So I asked her, “But if EVERYONE is doing that now, dying their hair, getting tattoos, going “goth” , and shopping at HotTopic, are you really making a statement? It’s not. It’s the new ‘normal’, isn’t it. ”  She didn’t really know what to say to that.  See, I don’t have a single tattoo. I don’t dye my hair technicolor. I’m not some trendy gender. Been married to the same guy for almost 21 years. I don’t have a nose ring, or some other odd piercing.  I think people ought to be respectful to others , and pretty  much live and let live. Wow.  In this day and age, guess what? I’ve become the new bizarre. And to quote Baudelaire, “It’s beautiful. “

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About Me~, chronic illness, inspirational, Uncategorized, Writing

Welcome the Waiting ~

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I had both a saddening and inspiring conversation yesterday on a FaceBook page I follow.   It posts funny and interesting quotes , with the kind of things that people usually can smile at , or find something to perk their day up.  Well, while I was scrolling I saw a quote that said “Everything that’s difficult , you should be able to laugh about. ”  Underneath , a young woman had written, “Well, what about terminal cancer? Chronic depression?  Unending pain?”  And I suddenly felt very sad.  I felt compelled to reply to her , so I wrote, “Well, I can’t speak for terminal cancer, as I haven’t had that particular wellie, but I have had depression , suffer from more chronic health issues than would fit in this paragraph, and pain that would drop a bull-moose, and YES, I have laughed AT and THROUGH all those things, as crazy as it sounds. Once you get to a certain point, it all becomes so ridiculously bizarrely fantastically insane that this should all happen to one person that all you CAN do is laugh.”   She replied that she no longer even had the energy TO laugh. She said, “I have lost my joy, and I don’t know what to do to get it back again. How do you find your joy with all you have going on in your life?”

I didn’t even have to think. I knew exactly what to tell her. I’ve learned so much in my more sick than healthy years.  I said this, “I understand. My way of dealing has been to cut out everything absolutely unnecessary in my life. Toxic people. Toxic situations . Read more of the things that bring me joy. Spend more time outside when I can. Be with the people I truly love. Unplug from all the garbage on television and internet. Eat the food I like, even if it’s not necessarily healthy, lol. Laugh at ridiculous things. Just take stupid good care of my self , even if it seems selfish. Like insanely long baths, if that’s what I feel I need. Stop when I’m tired. Which is often. Tell the doctors what I think. Even if it’s NOT what THEY want to hear. Make it about the things I TRULY NEED. Journal, and write, and go back to the things I loved when I was 10 and 15 and even 20. I blog, I run my lupus support page. I speak my mind about the things that I think are important. Like being kind. I color . I Zentangle. I listen to good meditative music. I listen to trashy 80s metal, lol I sing, and take photographs and write bad poetry  ”  This has been my way of finding myself.  You have to. There will not always BE happiness, or even laughter. But I do believe there IS always JOY.  Sometimes we must find the joy in the waiting, the joy is in the fact that we are making it one more minute in this craziness we are dealing with. 

Don’t get me wrong, I have days where sometimes I wonder where the joy will come from, but it pops up in the funniest , most surprising places , when I least expect it. I refuse to give up on it.  I hope to always, always be able to ……………..

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

Unsaid~

 

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I was  in the doctor’s office again this morning . ( Big shocker there, right? Heh. ) No, with lupus and it’s many lovely cab-riding co-morbid leech-y partners sometimes weekly visits are a given . Sometimes even MORE than one visit per week is something you just say , “Meh.”, to, at this stage.  I’ve been feeling puny as my Daddy says since last week. Without going into gory details, ( Oh, who am I kidding……..tossing the lunch monkey, making “the noise, that noise that shall not be named” as my teenage sons say in dramatic tones,  general all  -over pain,  congestion of the size that back-hoes are needed to haul away, and just basically wishing I could curl under my floofy grey ginormo cover and dis- a-frickin- pear) . I finally gave in today and went, where my nurse Cynthia gave me the “look” , meaning ,”And you didn’t call me last week ‘WHY , YOUNG LADY?!?”  Sigh. I know. ‘Cause I’m a moron. General knowledge at this point.  Anywho, that tidbit of miscellany aside, she got me all vital-ed and everything , and I saw the doctor , who’s a peach.   If you can say that about a jolly 260 pound linebacker sized gent who looks like he crushes coconuts in his spare time, but is really the kind of dude who takes his little girl to get her nails done Disney Princess style. I might say it, but maybe not , like to his face. 🙂

 

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So turns out , I don’t ( By the grace of God , have the actual flu or strep , which IS going around, GAG me with a thousand troll toenails. ) I DO however have a severe sinus infection and probably like bronchial junk which goes with. ANYWHOOOO. So this next part requires kind of a backstory so that you can understand the following without me seeming like a total and complete loon.

See , I’ve been sick, for a very , very long time. Since childhood. And in the early 80s there was not a whole lot of knowledge about auto immune disorders, especially in children.  I mean , there is still not a slew of things known about it now, even in adults and back then in children , you might as well  have been an alien. So I was in the hospital.  A LOT.  Pretty scary experiences for a small child, you have to admit. But I was actually pretty lucky. I got to go to the hospital I was born in . And see the doctor who delivered me, and the nurses who worked there? I went to school with their kids, who were all my age. And our hospital was always a little bit old fashioned, and I remember it had the cast iron beds. The neat what people consider  the “vintage” kind now.  Our town was so small that the mayor was the X-Ray tech.  The hospital cleaning lady , was my church’s secretary and roll taker. One of the nurses was the police chief’s wife. I’m named after the delivery nurse who helped my Mom in labor.  I said all that to say this, one of the nurses there was always particularly close to me. She just seemed to always know when I needed something. I always tried to be brave, because I know being sick freaked my parents out. They didn’t know what was wrong with me , in those early days, and didn’t really have a way to pinpoint it. They just knew I was frail and in a lot of pain.  But Cynthia, she just knew how to set it right. With me, AND with them.  And she had this great laugh, when you heard her in the hall, you just somehow knew, no matter what things would be okay.

The funny thing is, that’s her that  works in my local doctor’s office now. THAT Cynthia.  While I was sitting in exam today , waiting to get my injections for my infection, I heard that laugh, and started to tear up. I couldn’t help it. She comes in with the shots all ready to go, and looks at me. I told her, ” I need a hug.  When I heard you in the hall laughing, it brought back so many memories of cast iron beds, and scary days, being afraid, and not knowing what was going to happen , or even if I was going to make it. But I’d hear your laugh in the hall, and suddenly I’d just know , ‘Cynthia’s coming. It will be okay now. ‘ ”  And then I couldn’t speak. I was just hugging her and bawling my eyes out. You just don’t know how much stuff like that means to someone.

She told me , that she had needed that today. So I was glad I said it.  Oh how blessed I have been to have had my care team from PCH and Mercy Medical. My hometown. And if you have people like that in your life, tell them! Tell  them now. Don’t wait. You don’t find them everywhere, trust me. I have trusted these people with my lives , countless times, and they have earned my gratitude, my heart, and yes, I tell them without shame, before it is gone, the time has passed, and they aren’t here anymore. I tell them, ” You mattered to me!! I love you!”

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About Me~, art, inspirational, Poetry, Uncategorized, Writing

Crossings ~

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I’ve always been fascinated with eyes. From the time I was small , and realized I could draw , I was determined to get the shapes and forms of eyes realistically captured on paper. Human eyes, animal eyes.  I can’t remember a time in my life when I didn’t love looking at people’s eyes when they spoke. It seemed to me they spoke volumes about what it was they were really saying.  I never really realized until I was grown that although a person could be telling you one thing with their words,  that their eyes could be telegraphing something  quite different.

I guess there’s quite a whole psychology behind that kind of thing now, and educated folks who know about that kind of stuff would say I probably have some kind of a complex or something. That whole Nietzsche quote , “And if you gaze long enough into an abyss, the abyss will gaze back into you. ” , and all that jazz.  I’m not so sure that’s what old Friedrich meant.   I’m more inclined to believe in the Biblical standpoint of Matthew 6 :22  “The light of the body is the eye: if therefore thine eye be single, thy whole body shall be full of light.”

So I guess, really it’s my unconscious way of gauging whether I like you or not. My mother has always joked that I have an instant people -radar . Either I like you or I don’t. First impressions, ALWAYS. And I think it’s the eyes. I can just kind of tell , ” Yep. Me and these peeps , we’re gonna’ be friends.  Or these people are shady, I don’t like ya’ now, and I ain’t gonna’ like ya’ later.  Maybe that’s wrong of me. I’ve always tried to trust my intuition in those kinds of things, and in most cases it’s served me well.

Besides , eyes are quite beautiful , don’t you think? The colors, the shine, the slight twinkle that says they know something that you don’t. And that maybe, just maybe if you look long enough, they might let you in on the joke.

Very young eyes,  eyes full of life, and of course my very favorite , the eyes of the very old. The things they’ve seen and the secrets they hold. If I could have a camera to capture it all.  But of course , the films are theirs. Memories only they choose, to keep wound on the reels of the 8mm cameras of their minds. And rightfully so.

  Because there is a word for this soul gazing  ~ Opia ~ The intensity of looking someone in the eye which can feel simultaneously invasive yet vulnerable .

 Perhaps Nietzsche WAS right in a sense,  but it’s not an abyss at all; it’s a crossing,  a sharing  of sorrows , of joys , of things unsaid,  and songs unsung, and a time passed between two like souls.

 

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~, chronic illness, inspirational, Uncategorized, Writing

Win, Lose, or Draw…..

Happiest of weekends to you EveryBUDDY! I hope today finds you having a blessed one. It is cloudy , grey and gloomy here today in my neck of the woods, so I reckon it’s going to be a jammies and “bum around” day , for me. Whatever your plans are, I hope you have plenty of spoons to get all you need accomplished.

Anywho, we’ve just got three letters left in our series, and then I’ll be on to write about something else.  🙂 I  am interested in hearing your points of view, and if you have something you’d like to know, or you’d like for me to cover here. I’ll take all comments into consideration.  Without further ado, here is the list so far, and then today’s thoughts.

A: Acknowledge and Accept

B: Breathe.

C. Find  Comfort

D. Get a Doctor or team of them you can trust

E. Exercise ~ even if it’s just a scoonch ( Hey ! Scoonch is a word!)

F. Have Faith

G. Set a Goal , even if it seems small

H. Hugs! Everybody needs them!

I.  Sometimes we need, Isolation 

J. Rid yourself of Junk

K. Keep Kindness as a philosophy

L. Laugh long, laugh often!

M. Medications

N. No

O. Okay

P. Perfection ~ Not going to happen 

Q. Question everything!

R. Research. Research. Research

S. Sorry …..You don’t have to apologize for being sick!

T. Talk….. talk to those around you about what’s going on.

U. Ultraviolet protection

V. Vascular involvement ~ It’s a thing.

We’re all the way down to the letter “W” .  To me in this disease, the letter “W” has always stood for “Winning”. Now that might seem like an odd thing for someone with several horrible chronic illnesses to use to for that letter. I know some people would say, “Winning? How in the world are you winning?”  .  And on the face of it, it seems counter-intuitive. But bear with me, and I’ll explain.  Because of my disease,  I have discovered that I am much stronger than I ever knew.  I have found out that people as a whole, really DO care about other people. (I mean, of course , you get the people who are jerks, but that’s really THEIR problem, not mine.) I have  learned to be much more compassionate , to people who are struggling. (It makes you see the entire world through the lens of , “What might these people be dealing with , on a daily basis?”) I have realized that we ALL need other people, that no one should have to go through their life, feeling alone. I discovered so many things about myself, and the people I travel through this world with, at a very early age.

 

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So to me, that IS winning. No, I didn’t win the genetic lottery, obviously.  But it doesn’t mean I can’t make a winning hand with the cards I was dealt in my genetic stack.  I will keep playing the cards I have, and keep on “refusing to lose”.

I hope you  too, can find at least one thing, that you feel like you have won at, despite everything.

And if I haven’t said it today,  I LOVE YOU!! with all my ❤ and 🙂 and as always ((HUGS)) ~ Ruby J.

About Me~, chronic illness, humor, Uncategorized, Writing

Soak up the Sun…..(or maybe not.)

It’s the weekend! WhootWhoot! I hope you are enjoying yours so far.  Mine shall be mostly under the radar , I think. A trip to the grocery store, maybe. That’s about as crazy as I get these days  🙂  We are coming to the end of our ” 26 Days ” Series . We have 5 letters left! It’s been a pleasure sharing all of my experiences with you, and I hope it has been some help for you. So far our list has been………

A: Acknowledge and Accept

B: Breathe.

C. Find  Comfort

D. Get a Doctor or team of them you can trust

E. Exercise ~ even if it’s just a scoonch ( Hey ! Scoonch is a word!)

F. Have Faith

G. Set a Goal , even if it seems small

H. Hugs! Everybody needs them!

I.  Sometimes we need, Isolation 

J. Rid yourself of Junk

K. Keep Kindness as a philosophy

L. Laugh long, laugh often!

M. Medications

N. No

O. Okay

P. Perfection ~ Not going to happen 

Q. Question everything!

R. Research. Research. Research

S. Sorry …..You don’t have to apologize for being sick!

T. Talk….. talk to those around you about what’s going on.

That brings us to “U”  .  “U” is a very unusual letter when you think about it. If someone asks you to come up with a word that starts with it, you probably have to think for a few minutes.  But in fighting  lupus , believe it or not , there is a word that starts with the letter U that they warn us of right off the bat. And that is Ultraviolet rays. Any rheumatologist worth their salt will tell you either at your first appointment, or very soon thereafter, “Try to avoid the sun. ” “If you DO go out, wear long sleeves.”  “Get a good UV blocker and apply it generously. ”

I generally explain it to people as , “I’m basically a vampire. ‘AAAARRRRGH!!! The hideous light of the DayStar!!!!’  ))makes shrieking noiseswhilemeltingintothefloor((( that type thing”  .  They usually get the gist of it , when I explain it that way. And it’s basically true.

The sun can cause your autoimmunity to kick off, making your body attack itself. So sunscreen is your friend.

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I really like this one , for everyday. It’s light, but still provides 21SPF.

https://www.covergirl.com/beauty-products/face-makeup/foundation-makeup/clean-matte-bb-cream?&utm_source=google&utm_medium=cpc&utm_term=%2Bcover%20%2Bgirl%20%2Bbb%20%2Bcream&utm_campaign=Covergirl_Search_Brand+Awareness.BMM&utm_content=sHAOlfH0s_dc%7C115881177878&gclid=CLbk7-nB9tECFQaewAodwTgLyg

You can also buy sunblocking clothing; long sleeve shirts, hats , light jackets , etc.

Solumbra offers tons of choices in these areas

http://www.sunprecautions.com/

However you go about it, just make sure you protect yourself. The sun can cause your rashes, incidence of skin lesions, and other not-so-fun things to increase. Not to mention the fatigue that it can bring.

There are, a few things along the way that I have noticed about this.

One benefit of it I have noticed is, my skin is in great shape. Loads of sunscreen wearing, no sun -worshiping , has kept me wrinkle -free.

But there is a serious downside. I am , and probably forever will be, deficient in Vitamin D. I have to take loads of it , to keep my numbers up. This is definitely something that your doctors should keep checked, as well.

So there you have some of the long and short of sun protection. Do your own looking into what works for your skin type. What you like as a style, and what keeps you healthy.

Oh, and if I haven’t said it today…..I love you!! with all my ❤ and 🙂 and as always ((HUGS)) ~ Ruby J.