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

Tír na nÓg

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I thought it was the rain ,

that called to me,

and so I walked .

A grove  beckoned,

 seemingly manifested ,

from everywhere, and nowhere  all at once.

Dark? Was it?

The path had grown so very dark.

So much so ,

it seemed that

the trees themselves seemed to forge a cage;

bars pushed close ,

to what used to be a path.

Time? Had I noticed, what was the time?

Stretched so very late now .

So much so that

the moon itself has fled away, with its

Covers pulled,

over what was once a glowing night.

Tired? I thought , I must be,

I have grown now very tired,

So much so that even

 my eyelids fall under the veil ;

 of  a  sealing away , in unspoken concert .

I drift and  swear,

I  hear the mossy music

of  the Seelie,

wings in canopy above.

Light? Is it morning ?

The knoll where I am now , drips,

with light;

so much so that ,

it is glittered. Gilded.

Gossamer strands of green;

grey, misty and ethereal.

Reverie? Illusion?

Perhaps, it all  had  been.

The path, the glade,

the gold, the music,

all conjured ,

From a bogle’s twinkling eye.

 

 

 

 

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art, Poetry, Uncategorized, world affairs, Writing

#cyberpunked

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“Do androids dream of electric sheep?”

What would we know of the secrets they keep?

An altered carbon,  a perfected sleeve. 

Would there be random fragments of code, 

those ghosts in the machine?

If you weren’t real, how would you know?

Your programming would not tell you so.

In simulation it would all seem to  turn,

streams of   data, digital burn. 

Iamus?

ICARUS? 

Beauty and flaws. 

Asimov, Morgan, 

Turing, Three Laws. 

 

 

About Me~, Uncategorized, Writing

The Substance of Things Hoped For~

 

 

 

082259cecc6245411ec469c2cff7c222I was very , very ill yesterday. And literally slept from 7p.m. the night before, until 5 :30 p.m. last night. I don’t know whether it was a lupus flare, if I’m come down with any number of the bugs that have come through our area in the last couple of weeks, or if it’s just my body trying to recuperate over other things . What is that saying , “The best laid plans of mice and men often go astray. I had such huge plans yesterday, to conquer the laundry, the loads of school books that need to be organized, and the kitchen which definitely needs to be organized. But had no spoons to deal with. So I crashed. And I realized that todays word needs to be “Faith” . Now I know a lot people will see that and think , “Oh that’s religious, and you’re going to go off on some religious spiel. I make no bones about the fact that I am great believer in God, and in his teachings. But I know many other people of many other religions who follow other tenants. The point is, when you have chronic illness, you have to faith of a certain kind. Faith that we will make it one more day. Faith to conquer our fears, that we will be alright one more day. Faith in the science of medicine. And yes even faith in God. I honestly believe my faith has carried me this far. and I could not have gone alone. We need to have faith that one day things will be better. If we don’t the world turns out to be very lonely place that leaves us wondering , why are we bothering to try anymore. I refuse to allow that to happen to me. I honestly believe there are bigger and better things out there, and if we follow the voice of faith and love. We will find those better things. We WILL MAKE IT!! and the end results will be worth it. Never give up, never lose hope, and keep your faith with you at all times. It will carry you through. Oh and by the way, I love you ! With all my ❤ and 🙂 and as always ((HUGS)) ~ Ruby J.

About Me~, Uncategorized, Writing

Do What you Can, With What you Have

AAAAAAARRRRRGH! I missed a day!! UGH. I was on a roll , too. HEH. Well, what can you do. Sometimes your body just demands that you “lay low”, as my Daddy says. Anywho. I guess that makes today the letter, “E” right? I feel like we need a Muppet saying, “This was brought to you by…………”  🙂

 

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So today’s thought is , “Exercise”. Now before you get in a bunch, and say, “I’m disabled! I can’t exercise!” Well obviously I don’t mean that you will do the same things that “normal” people will do. My body is totally not in the shape it used to be. Before I got ill, I was in great shape. I worked two jobs, and was physically in the best shape of my life. Now I am lucky if I can walk down the hall , without being winded. But I DO walk down the hall. When I had the stroke, I was wheelchair dependent. That was very difficult for me. And I swore that if I ever regained use of my legs, I would do all I could to keep it that way. So of course I’m not out running marathons! But I DO stretches, yoga , and when the weather is good, I walk. Maybe I can only walk a hundred feet. Or to the end of the driveway. Some days my body is so exhausted that all I can do is lifts and stretches while I’m laying down. But I make my body do something. And be proud of what you CAN do! Don’t compare yourself to someone else. Don’t feel bad, that you are “only” stretching , or “only” walking a hundred feet. Any effort is better than nothing. We are strong, capable people, who are absolutely doing the best we can , with what we have. And that’s all ANYONE can expect. I am so proud when I see my fellow lupies posting pictures of their everyday triumphs. You guys rock, and my world is a better place for knowing you! We make every little thing count, and I think other people could definitely learn from us. Oh and if I haven’t said it today  , thinking of you with ❤ and 🙂 and always ((HUGS))

One step at a time! ~ 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.

Poetry, Uncategorized, world affairs, Writing

“O Death! or Good Riddance to 2016”

 

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Twenty-sixteen

Come and gone,

and leaving in its wake ,

so many sorrows.

The Starman became Stardust….

and the Caterpillar went through The Looking Glass.

The Mockingbird flew away,

and old Blue Eyes flew too.

Purple Rain,

a Butterfly and a Bee,

“O,Death. O,Death,

won’t you spare me over ’til another year?

The Candy Man

took the sunshine with him,

and we were left singing a “broken Hallelujah.”

This year;this long and stumbling year,

refused to let go.

One last stab,

one more slice.

A Princess beloved ,

she had become a General ,

and stolen our hearts

all over again.

Twenty -sixteen, you have gone,

and left a bitter taste in our mouths.

Twenty- seventeen ………………..

Please? Be kind.

 

About Me~

Off-key~

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Use what talent you possess: The woods would be very silent if no birds sang except those that sang the best. ~ Henry Van Dyke

I like to sing. I don’t know that I’m any good at it, but I enjoy it. I especially like turning the radio up loud when I’m in the car by myself, and just letting it all go. I know the people at stop lights probably wonder if I’m cleared to drive, but hey, life is too short to worry about what the person in the next car thinks, right? Music is good for the soul, they say, and I have found that to be true. When I don’t feel well, I love turning the music channel on the t.v. and listening to depressing songs. Sounds weird probably, but it helps me feel better. Hearing other people sing about how their life sucks just kind of makes you realize that maybe yours isn’t so bad. I had never seen the above quote before today. I think it’s great, though. I wish more people felt like that. When I was little my dad used to take me out in the woods a lot. I loved sitting with him and listening to all the sounds of the outdoors. I hadn’t really thought about what the forest would sound like if only the best birds sang. You don’t really imagine one bird saying to another, “Geez, Bill, you are SO off-key! What is with you?!? Thinking you can sing and crap? Get real!” No, I guess they are probably all just happy with what the Good Lord gave them, and just happy with the fact that they didn’t get eaten overnight or anything. If we were more grateful for the small things in life, we might have more to sing about……..Hmmmmm…..well, I didn’t get eaten overnight……believe I’ll sing! 🙂