Today is May the 1st, and kicks off #LupusAwarenessMonth Now for those of you who don’t know lupus is a serious autoimmune disease which causes the bodies immune system to become confused and attack its own vital organs as if they were they were foreign objects. As in your immune system sees your liver and says “AAiaiAIaeeeeee! Intruder! Intruder! Kill it!!!” So into a flare you go. A flare is basically your entire body under attack from within. The lupus cells basically telling all the others, “Suck it up, cause we’re in charge now!!” These flares can wreak havoc with ANY part of your body , at ANY time. Lupus stole my firstborn child from me , at 3 and 1\2 months pregnant, it’s stolen my heart health, as I now have only 35 % function of my heart muscle. It’s stolen years from my life, added up , in doctor’s visits, and lengthy hospital stays. It’s stolen my nervous system health , because the inflammation has irreversibly damaged my function controls . It tried to kill my oldest son in utero , damaging his cardiac nerve beyond repair ,causing him to need a pacemaker at just 9 months. It’s stolen my uterus, my appendix , my gallbladder. If that weren’t enough , the medications I’ve had to take to maintain any semblance of normality of health have side effects you wouldn’t wish on your worst enemy. They’ve leached the calcium out of my bones ,disintegrating my jaw, loosening my teeth and leaving me with the skeleton of an 80 year old lady. I have cataracts, and I’m slowly losing my hearing. The chemo causes my hair to fall out, and my stomach to wish it had never , ever so much as even heard the word food. It has stolen relationships with family members who don’t understand. Who think I am somehow “putting on”, that I WISH to be this way, that I fawn for this attention. When all I could ever really wish for is to disappear down a deep dark hole where I would never have to hear the word lupus again. Yes, lupus IS the great thief. In bits and pieces , it steals until you have no more coin with which to bargain, and so are left the champion. At the cost of all you are, but the champion, none the less. And so , we live to fight another day.
I would like to start this post by saying, that ANYONE who knows me, knows I don’t get offended easily. Pretty much anything , anybody says, just rolls right off my back.
However, I just recently read an article , with MEMES to go along with it, that just totally rubbed my fur the wrong way.
And once you read it, I am fairly sure you will feel the same way.
To start this off, I always thought the idea behind childbirth was to have a HAPPY, HEALTHY child. One for the parents to love, and one to love the parents.
WELL, this fella ‘ here has just set childbirth, and childrearin’ back 100 years and caused a great deal of unhappiness between women. When you read it , you will understand, and be just as outraged as I was. Seriously, this man is half a bubble off of plumb, a donut short of a full box, and as my Daddy would say, “His bread’s in the oven , but the gas ain’t on. ” The word chauvinist doesn’t even BEGIN to cover it.
Because apparently , those of us who had C sections are INFERIOR.
Because , apparently, we didn’t REALLY LOVE our babies, we are just selfish for making different choice.
Because apparently , we’re just drug-addled women , who are lazy and chemically dependent.
So we have no business having doctors interfere in the “natural” process of birth, even though our children came early and would have died without medical intervention. We’re just lazy like that. Needless to say, I refuse to feel sorry for my childbirth experience , as my sons are 16 and 14 and are completely healthy , despite the fact that (SHOCK AND HORROR!!!!) they were both born by Ceasarian section.
So perhaps there is hope after all!
I don’t understand why.
Why you hurt me all the time,
and try to make me cry?
I know that I’m not perfect,
but I never claimed to be.
I only know one way to live,
And that’s just to be me.
I get that we’re polar opposites,
you’re the sun and sandy beach.
I’m winter cold and drifting,
the moon you cannot reach.
I’m sorry I can’t be the person,
that you need me to be,
I don’t know how to change it,
so I’m setting myself free.
I’m one thing and you’re another,
and I ‘m tired of playing games,
I ‘ll always be just who I am,
I’ll always be the same.
It hurts that you don’t want me,
but I have to let it go,
my heart can only take so much,
of this bruising in my soul.
So now you’re free to be the person,
that you want so much to be,
I’m just here in the shadows,
you don’t have to worry about me.
I’m going on with what I have,
and leaving you behind,
I hope you have much happiness,and peace to soothe your mind.
I’ll always have a prayer for you,
I know you’ll have the same,
I ‘ll keep the good times in my heart,
and won’t forget your name.
I was a mess of clumsy limbs,
with my head going faster than my feet most days.
Tangled curls of black hair, forever in my eyes.
He was tall,
his eyes as green as the leafy oaks in summer.
In that moment,
the world somehow seemed,
as if gravity were suddenly released .
And I knew,
knew that if I didn’t make him mine,
I would fly off into space un-moored,
forever losing something
So I took hold
of his lumber-scarred hands,
and I’ve never let him go.
Ruby Jeanette Woods
Happiest of birthdays to the love of my life,
Thank you for all you are, and for making the world a kinder , gentler place.
I’m a better person because I know you.
Remember that everyone you meet is afraid of something, loves something, and has lost something.
— H. Jackson Brown Jr.
The world’s a crazy place these days. Everywhere you look , every web page that flashes onto our screens seems to just scream negativity doesn’t it? You can’t even leave a status on FaceBook without people spewing their personal outrage about what you’ve said. For some reason anger, jealousy, and profanity seem to be the knee-jerk reactions to everything . I’ve been accused of being a Pollyanna , naive, or even just stupid for being a positive person. I’ve had people glare at me, or even swear at me for smiling at them and speaking kindly.
I first started waitressing when I was 13 years old, in a little cafe in the town about 10 miles from where I live. My older sister worked there full time , so the manager let me tag along , so to speak , to learn the ropes. I had a lot of great teachers there, from the fry cooks in the back in the kitchen , to the night managers, to the owner. But one of the lessons that ran solidly through with all of them was that the more upbeat your attitude, the better your workday would go, and the greater the likelihood that you would achieve success. Always try to put yourself in the customer’s shoes. Maybe they had a hard day at work. Maybe there were troubles at home for them. Maybe even they were on drugs. Learn everything that you could about each customer. The more you knew about them as people, the better you could serve them. It made a huge difference.
It’s why I’ve always loved the above quote. Everyone , EVERYWHERE is experiencing some type of struggle. Maybe it’s not obvious. You may never know what it is. It could be physical, mental or emotional. It might be something so horrible that they feel they can never speak of it again. It only comes out in rage , or even silence. The real truth is , we can only be responsible for US. OUR reactions. OUR words. So every day , with each person you meet, ask yourself, “Will they leave this encounter with me, bitter, or BETTER?”
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.
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.
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!!”
Have you ever had someone make you so angry , that you were struck with laughter? I mean literally ? You laughed? That the person could be so absolutely so gobsmackingly stupid as to say something so baldfacedly in-your-face that all you could do was to laugh? I have , and just today. And the problem was it was my teenage son that said it. I mean don’t get me wrong , I love my boys, and they are good boys. Just about 99.99 % of the time. But every now and again one or the other of them says something that you are just struck either completely dumb, struck with laughter, or with the absolute desire to run screaming for the hills. I know completely that my mother stood over a cauldron with herbs and a little stirring stick and said the words to curse me, for I have a child who is the spitting image of meself. In face, in body language, in compassion , (people tell me, not I, in heart also ) , oh but also , also , in that wee bit of rebellion that rises up and says ” Make ME. Just MAKE ME” And let me tell me you if it had not been for my dear old Dad , I swear I would not speak with a full set of teeth now, for I was twice the handful he is , I assure you. My mother earned every one of her beautiful grey hairs. I know I will make it through these times for they are 13 and 15 and we have not far to go, but whew. This morning I was tempted to run to my mother’s just up the hill and beg forgiveness for every gobsmacking thing I had ever said or done , and beg her to reverse the curse, but then I thought , “No , this is my due penance, and she is deserving of watching me pay it. ” Then I thought I shall go to the kitchen and get out a own cauldron this eve, and say some things of my own.