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

Keep the Beat Going……….

 

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Happiest of Tuesdays to you EveryBUDDY! I hope this finds you having a great one. We have had that ridiculous stomach virus here at our house, so the last couple of days have been not fun . It is apparently very contagious and is making its rounds through several different states. If it is where you are at, make sure you are careful. Us lupies do not need any help with being ill. So, that being said, on we go, with our “26 Days”……

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

Which brings us to “V”. February is National Heart Month. Heart disease is the leading cause of death among women, and in Systemic Lupus heart disease can be a significant heath risk. “Vascular” health among those of us with serious flare activity is a major problem.  Although I have congestive heart failure due to mine, with 35 to 40 %  ejection fraction, and peripheral neuropathy, and have had a stroke,  I am no expert on the subject, by any means.   That being the case, I thought it would be better to direct you to some articles …………

http://www.lupus.org/resources/15-questions-cardiovascular-issues-with-lupus

And here is a good one also ………

http://www.lupusny.org/about-lupus/fight-lupus-body-and-mind/caring-your-cardiovascular-system

Please , whatever you do, take the best care of your heart that you can, keep that beat going strong………. ❤ ❤  ❤

 

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

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

I Got Pills……..They’re Multiplying..

Okie  dokie artichokies! The world can now go back to its regular scheduled programming. 🙂 I. E. we are back to our “26 Days , 26 Ways” series.

So if you’re keeping up the list so far is…..

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!

And now on to the letter “M”, and it’s one of those things that we all have to discuss at some point in our illness journeys. M , for Medications. Sigh. I have had an up and down relationship with medications. Always have had. They are a double-edged sword of the worst\best variety. And there are so many opinions on them! Some people are all for it. Their attitude is, “If the doctor prescribes it, it HAS to be a good thing!”. Then there are people who are so ANTI-MEDICATION that it’s practically a religion with them.

 

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These are the people who will give you the whole, “Big pharma is a scam. They only do this stuff to make money , and if you take that you’re going to do nothing but make THEM rich, and yourself sicker!!” . But let me just say, I happen to be of the  middle of the road opinion on this matter.  I’ve had some really great experiences with medicine. At one point I took Imuran for about 2 years, and my lupus went into remission! That was amazing. But I’ve also had some very-not-good experiences with medications. Case in point, Ambien. I took ONE Ambien , and ended up in the hospital for three days hallucinating and talking to someone I called “the green men. ” Or so  my husband tells me. I don’t remember ANY of it. Morphine is another Nay-Nay drug for me. Doesn’t do a thing for my pain, and shuts my respiratory system down. So I believe you put that in the don’t column. 🙂 And then you have the heavy-hitter. Prednisone. Oh , joy of joys. Satan’s tic-tacs. At my worst I took 80 mgs of prednisone every day for 2 years.  Yeah. Heh. Fun times.

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Prednisone really CAN be a wonder drug. Without it, I know that my heart would have been lunch-meat for the zombie that is lupus. But it leached all the calcium from my bones, leaving me with the skeleton of an 80 year old lady. It caused me to have hearing loss, cataracts, and sent me into adrenal shock when they misjudged weaning me off of it.

So there you have it. The good,  the bad, and the very bad. So what’s the solution? Do you stay away from all medications? Do you take everything the doctors want to throw at you?

What to do ? First you have to research, research, research! Read up on it, ask millions of questions , and then ask more. Weigh the benefits against the risk. Sometimes as my Momma says, “The juice is just not worth the squeeze. ” Meaning, the side effects may be more horrible than the original problem.  Secondly, I just think we need better options! Lupus and auto immune diseases are somewhat of an orphan industry. The pharma companies don’t seem to think there are enough of us to really put in the research for it to make a profit for them. So in that case , the anti med people are right. We need genuine caring researchers and scientists to be interested in a cure for lupus! We need better, more effective medications that will be target specific.  Until then, we must make do , make the best decisions we can, and work in concert with our doctors to make sure that we are getting the best care that we can for ourselves and those who love us.

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

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

I Think it’s Time to Fly Away ~

 

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Hey howdy hey, everybuddy! I hope today finds your basket full of spoons, and that you are brimming with ideas of things you want to do. 🙂

So far in our journey we’ve covered letters A-H, and I hope maybe some of it has helped you.

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!

Today brings us to a subject that I have struggled to bring up,  but I have promised to be honest in all my writing. I mean , if you can’t be honest , why bother putting it down to paper, ( or screen , as it were. )  So here goes.b4795f73acc52313ef76394d71f8e54a

Today’s letter is obviously “I” , and in my long journey with chronic diseases, I have found that believe it or not, sometimes, just sometimes, ISOLATION helps. That might seem harsh. And I guess probably to our families , and loved ones, who care so deeply about us, it probably is. But being this sick is overwhelming. In a way that , unless you’ve been there, you can’t POSSIBLY understand. Doctor visits, nurses visits, specialists visits, therapy visits, pharmacy visits, family visits, ( and although they mean well, sometimes this is hardest of all. )  “How are you feeling?” ,  “What do the doctors say?” , “Have you tried that new medicine?”, “Is it working?” . People crowding you in from every side, with every question they can think of. Until you feel you have no air left to breathe, no answers for any questions, no identity except this horrible unseen monster that has taken over every waking moment of your life, and you feel you absolutely MUST GET AWAY! FAR AWAYFARAWAYFARAWAY someplace where you can just let all thoughts of this stupid disease melt away, if only for an hour. This is the hardest thing to explain to the people we love. We want them to feel like they can ask how we are, of course! We want to share that. We want friends, and those in our lives, to care, and feel like they know if they are saying the right things.  But sometimes, there JUST IS NO RIGHT THING TO SAY.  So when it all starts to pile up into a huge steaming heap of medications, I.V. infusions, chemotherapy, endless rounds of blood draws, and doctors with no answers, we just have to withdraw. (Temporarily , mind you. I’m WAY too much of a ham to ever forgo my “audience” forever 🙂  But if we need to do that, we ask those who love us, “Please give us this space. This time. This isolation . ” I promise, we’ll come out feeling better for it. And I know that’s all our loved ones want. The best “us” available.

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

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

The Best Things in Life are Free~

Hey howdy hey, everybuddy ! I hope today finds you doing the best you can , with what you have ,where you are. I’m perched on my ever present sofa, under so many covers that I look like “Burritos Gone Wild” .  🙂 My chest has decided to pull its lovely asthmatic routine, which of course the damp weather doesn’t help. But anywho, what’s a gal to do, but suck down albuterol, pop a prednisone, and chug some cough syrup. Story of our lives, eh? But shall we get to today’s thought?  🙂

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

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

So that brings us to “H” . 

 

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Now bear with me, I have to kind of give you a little bit of background on this so it makes sense. I am a very affectionate person. I like people. ALL  kinds of people . The singularly different ones, the “something’s just a little odd ones” , the eccentrics, the painters, the artists the poets. The down trodden, the homeless, the not quite so clean ones.  I like being around them, talking to them, hearing their stories , and just being in contact with them. I also freely admit, “I am a “hugger”. I like  hugs. Hugs are good for you; and in turn , they are good for the person you are hugging. And they’re FREE!!  I mean, there’s research to back it up, and everything!! Here is a great article I found that explains it really well.

http://health.usnews.com/health-news/health-wellness/articles/2016-02-03/the-health-benefits-of-hugging

Here was one of my favorite sections of the article , that shows just how far a good hug can go.

There’s also some evidence that oxytocin can improve immune function and pain tolerance. A 2010 study from Ohio State University found that couples with more positive communication behaviors have higher levels of oxytocin and they heal faster from wounds. More recently, a 2015 study from King’s College in London found that oxytocin has analgesic effects, leading to a reduction in perceived pain intensity and lower pain ratings when participants were subjected to brief radiant heat pulses that were generated by an infrared laser.

So not only does hugging improve immune function, and pain tolerance, it JUST FEELS GOOD!  It’s a win \win , right?

So hug someone you love, hug your friends, your family, your children; I mean , I’ve been known to hug complete strangers who looked like they needed one. ( Of course, my hubs thinks I might be a little odd, but hey  😉

The world is a crazy, scary, uncertain place. People are dealing with all kinds of difficulties, struggles, and mental anguish. I would hate to think I could have helped someone , in a small way, but didn’t , because I missed out on a hug.

So rock on ! Huggers of the world! And if you see me, don’t be afraid to ask me for one .

Cause I love you! With all my ❤ and 🙂 and of course ((HUGS))!! 🙂 🙂   ~ Ruby J.

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.