Like I Haven’t Heard THAT ONE Before~ “You Don’t LOOK Sick!”

This is me. I like like poetry, writing it, reading it, hearing Robert Burns read in Gaelic style. I’m not going to tell you my age , if you know me well enough to have read my blog, or just know me well enough, then you know how old I am. I have black hair, and green eyes. 10603462_729906193748723_4065940491525995201_n 10411255_729906263748716_5728919877270098224_n 10625102_729906277082048_4005102635514899624_n

So here in this picture you might make all kinds of assumptions. She looks young , vibrant and healthy. She looks like she enjoys spending lots of time outdoors, and is fairly active. She looks good. But here are some more pictures of me.

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This is what I look like too. I have systemic lupus erethemetous. I also have complete heart failure, nervous system damage, seizures. Raynaud’s phenomenon ( a circulatory problem that causes your extremities to turn blue, purple or even black with cold) , Sjogren’s ( an auto immune condition that causes extreme dryness in your joints, and other areas such as your mouth , eyes and soft tissues.)  , and also POTs. Postural Orthostatic Tachycardia Syndrome a rare heart condition caused by my lupus damaging my nerves in my heart. I get adrenaline overload almost constantly from these, and so my heart rate runs a constant 125 sitting still , if I attempt to move or do any activity it will shoot up closer to the 200 bpm mark. I only have 30% function of my heart, and have such extreme allergies that just the very smell of certain things can cause me to have an extreme reaction . So WHY did I show you these? Because I want you to know what a person with lupus REALLY looks like. To know that we deal with excruciating pain on a daily basis, but still manage to look that first set of pictures. We don’t want your sympathy. We want your compassion and understanding. We want you to know that people DON’T take us seriously BECAUSE we DON’T look sick. We’re warriors every day . Our bodies are the enemy, and the weapons the doctors have given us are very limited. What we have is fatal. Yes, I said fatal. There is NO cure for lupus. It is the zombie of the disease world, eating us from the inside out. And yet, we still manage to get up, smile, walk on, love our families, and still hold joy for life, however short it is.  So maybe that’s why we choose to make sure that people see us this way, and why we hear SO often that dreaded phrase, “But you don’t LOOK sick!!”

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What Lies Beneath~

Original Poem ~ Ruby Jeanette Woods

Whatliesbeneath

Who am I really?

Lover , sinner , saint?

The outward faces that we show,

are only coats of paint.

Everyone goes about  the expected way,

and plays their little games,

never realizing , that they all spread the pain.

The ones we thought that loved us best,

tell the most vicious lies.

And all the time they hide behind

a mask of perfect smiles.

A world full of glossies , and whitened bright veneers

passing by those they deem less worthy,

and causing them to fear.

Left with wondering what we did,

to make them feel such disdain?

People we once trusted,

now just  turn the other way.

False friends , and broken vessels,

is all there is to say.

Whited sepulchers on the outside,

inside death and decay.

HERE BE DRAGONS~

DragonHeart

Some of my art. Colored pencil, pen and ink, marker, and digital.  Image Copyright. Ruby Jeanette Woods. 

 

HERE BE DRAGONS~

———————————–

Here be dragons,

long and lean,

bold of heart,

not craven , mean.

Here be dragons,

warm of soul,

strong of mind,

wise and keen.

They guard their treasure,

not gold nor gems,

but scrolls of wisdom,

words of men.

Here lies wealth of a different sort,

books and tomes,

from every port.

Come learn what every page does keep,

while under the wyvern’s wing you sleep.

 

Ruby Jeanette Woods

 

WARRIOR~

 My big brave boy. He never complains. I mean NEVER. He has lain , sawn asunder in the CARDI unit of ICU in ACH. 1425703_574474442625233_565914935_n He’s had so many horrible things happen to him in his life since he came into this world as an emergency delivery , blue as a smurf, not breathing, the doctors taking him by my head for a few brief seconds . He came 2 terrifying months early , because my body was killing him, unknown to us at the time, I had systemic lupus erythematosos which decided that my son was a alien creature deserving to die, and so it was starving him of oxygen , and destroying his heart. They told us he would almost certainly die, definitely have brain damage, and NEVER be normal EVER again. He would never READ, or WRITE, or WALK or BE like the other children. IF we WERE LUCKY to KEEP him with us at all.  So began a journey of proportions that my 19 year old mind had never anticipated. I only knew he was mine, and I loved him beyond all reasoning, and was going to fight with all I had to prove the doctors wrong. He was BEAUTIFUL. And something in my childlike faith told me he was strong. They told us, he will need at least 2 months before he can eat on his own and leave the hospital. He ate on his own in a week and left in TWO.  He got his 1st pacemaker at 9 months old,  said his first words during that visit to the hospital and nearly gave the nurses a heart attack. He could climb out of his crib at 10 months, and so we had to dismantle it, so he could sleep on his toddler mattress on the floor to keep from hurting himself. And although he had round after round of pneumonia, bronchitis, viral infections, and endless sicknesses, he knew all his colors at age 18 months , had a huge vocabulary and could hold conversations with adults that astounded them. When time came for him to test for school, he tested well into above average level, so those doctors who said , He won’t make it, he’ll die, and IF , we say IF he lives, he’ll be brain damaged beyond repair, I defy them to look into the green eyes of my big brave boy .Three pacemaker surgeries later, he now he takes apart lawn mower motors with my Dad, can see things mechanically , and digitally on a computer that my brain can never comprehend, and I know, KNOW without a shadow of a doubt, that there is a God , who has a higher plan for him , who that day when those doctors said , He will die, said , You are Not the MASTERS here, and I have never been more glad.  

Sticks and Stones~

Blacknwhiterocks

I’ve never really understood,

the cruel things people say.

Like swords in a duel they dart,

slide in the blade and walk away.

You’re ugly, fat, 

you’re old , unwanted , used,

people left there in the wake,

bleeding, maimed and bruised.

And yet they smile to others,

as if they’d never sinned, 

perfect masks held in front,

though I see the places where they’ve thinned.

Sticks and stones , proclaimed so bold,

and words will never hurt me,

A greater lie was never told, 

for words leave a pain unearthly. 

So mind the poison told in verse,

from those you think your friends,

sticks and stones might never hurt,

but words will be the end.

Ruby Jeanette Woods

Systemic~

755236667_673588

Tiny and trembling
and crumbling
and weak

I grew tired and lonely
and wished only for sleep
with a rock for a pillow
on a bed full of thorns

No rest for the wicked , the worried, the worn.

Awake, yet not truly,
the pain now has blurred,
the moon, and the water, the sun , and the earth ,

Circles in Circles
Wheels within Wheels
Wings fettered with chains

THIS IS HOW LUPUS FEELS!
th

Misfits~

artist : Ruby Woods

artist : Ruby Woods

I’ve never been a wealthy person. Never will be I don’t imagine. Money just doesn’t really mean anything to me. I mean I guess really, what is money anyhow? Paper that someONE decided was worth something. I could honestly say if I won the lottery tomorrow I can’t think of a single thing I’d buy myself. I have everything I NEED. Now I might pay off my bills, THAT would be nice. But I’ve always considered my single greatest source of wealth the people I’ve had in my life. See, ever since I was little, I’ve been labelled as what you might say generously as eccentric, not so generously as the odd duck, even less generously as odd, and downright meanly as just plain weird. I drew, painted, wrote poetry, was generally in the middle of some discussion about something I was thinking that left most people just scratching their heads. I had the smell of dirt or paint or grease or something about my person at all times I’m sure. And now I seem to have a knack for attracting those who are shall we say , differently framed of mind. Artists, free thinkers, or as my husband so succintly summed it up , “You my love, are a kook magnet.” I was raised very unconventionally for the time, my sister and I were home schooled at the time when that was NOT an accepted thing to do. We had access to museums, art, the library , basically unrestricted, I rode horses and lived like a wild faerie in the outdoors coming home looking like a strangeling. My Dad being the intelligent person that he is , saw that I needed direction and so he took me to the woods and taught me to hunt, about nature and wildlife, took me to his workshop and taught me to build things and tear things apart. My parents once got permission from the forestry service to climb the highest forestry tower in the dead of night simply so we might watch Halley’s Comet pass by in all it’s glory. So I suppose it’s no surprise that when I’m out and about now it seems as if certain people gravitate to me. The slightly odd, the misfits, the people whom most people make want to look the other way. I find they have the best stories, they tell them whole heartedly, their hands moving , living in only the moment they are right then. So if this labels me as eccentric or odd, then I accept this label gladly. I am proud . And what is a few hundred folded sheets of paper in comparison to that? No, I say. I am indeed wealthy beyond words.

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