Disabled. Doesn’t Work. Still One Phenomenal Woman.

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She said, “You chose a person that is disabled and doesn’t work over me.” As if being disabled and UNABLE to work made me the lesser choice. It didn’t help that he didn’t come to my defense with tenacity, anger, and “pissoffity” (extreme pissed off-ness). But you know what did help? Knowing who I am regardless of my disabilities and the inability to work.

“Life ain’t been no crystal stair”  is something Langston Hughes mother would say to him. I truly understand this poem at the age of 44. I look back over my life and it’s been filled with tacks, splinters, torn up boards, and no carpet. I’ve been reaching landins’, turning corners, and going in places where there is no light. In other words it’s been filled with one challenge after another, heartaches and heartbreaks. It’s been one bad break after the other. It’s been filled with PAIN and TEARS. I’ve been sad and lonely. I have been alone in a room full of people and lonely in a relationship. I’ve had bad things happen to me, #metoo and saw a dream die after a hysterectomy. I’ve been made a fool of and made horrible mistakes. I am sure anxiety and depression was here before I had a diagnoses and to mention some childhood drama and trauma. Teased, talked about, and bruised. Diagnosed at 8 with JRA and it made it’s return in 2010 as Rheumatoid Disease and brought Diabetes, Fibromyalgia, Osteoarthritis, and unexplained shortness of breath. Nope. Life ain’t been no crystal stair. And nope, that ain’t all folks.

However, I have raised a beautiful, bright, and intelligent daughter that is now in college. I have written three books. I returned to painting abstract art as a “black woman” and that may seem strange to some of the people in my circle. I have learned how to crochet. I have accepted my role as a spiritual teacher. I have found my authentic self. I keep rising from the ashes. Sometimes I am still standing and sometimes I get the wind knocked out of me, but I am still alive. I still believe in true, real, authentic love even if I never get to have it on this earth because I believe I have had it in another lifetime. I have learn to live fearless even when I am feeling fearful. I have went without so that my daughter could have. I love to give to other people. I love to fight for the underdog. I have traveled with friends and family and there are sunrises and sunsets engraved in my mind forever. It doesn’t really matter what someone says, even if it hurts. Even if it rubs salt in the wounds of dealing with being a different woman than what I use to be. I still know who made me. I still know I am fearfully and wonderfully made. I am not less. I am MORE. In fact I am a better woman because of all that I have survived and I look forward to spending the rest of my life thriving (with or without a man but hopefully with the one that matches my level of love and maturity).

Pretty women wonder where my secret lies.
I’m not cute or built to suit a fashion model’s size
But when I start to tell them,
They think I’m telling lies.
I say,
It’s in the reach of my arms
The span of my hips,
The stride of my step,
The curl of my lips.
I’m a woman
Phenomenally.
Phenomenal woman,
That’s me.

I walk into a room
Just as cool as you please,
And to a man,
The fellows stand or
Fall down on their knees.
Then they swarm around me,
A hive of honey bees.
I say,
It’s the fire in my eyes,
And the flash of my teeth,
The swing in my waist,
And the joy in my feet.
I’m a woman
Phenomenally.
Phenomenal woman,
That’s me.

Men themselves have wondered
What they see in me.
They try so much
But they can’t touch
My inner mystery.
When I try to show them
They say they still can’t see.
I say,
It’s in the arch of my back,
The sun of my smile,
The ride of my breasts,
The grace of my style.
I’m a woman

Phenomenally.
Phenomenal woman,
That’s me.

Now you understand
Just why my head’s not bowed.
I don’t shout or jump about
Or have to talk real loud.
When you see me passing
It ought to make you proud.
I say,
It’s in the click of my heels,
The bend of my hair,
the palm of my hand,
The need of my care,
‘Cause I’m a woman
Phenomenally.
Phenomenal woman,
That’s me.

~Maya Angelou

~Nikki

Today’s Affirmations

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Today’s affirmation:
Wealth and riches shall be in my house.
Everything I lay my hand to succeeds and prospers
I prosper, my health prospers, my relationship prospers
The more I give the more is given to me
The more I love the more I am loved
My loyalty is returned 100 fold

 

Can We Be Friends If You Can’t Understand Rheumatoid Disease is a DIS-EASE?

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When Rheumatoid Arthritis was in remission, yes, it is a disease that can go into remission, I was living it up! Going going gone! A whirlwind of endless fun and good times. My energy was unbelievable. People would say “You are always on the go” or “You walk by so fast it’s like a blur!” Working 10 hour days 5 days a week and then getting all the overtime I wanted. At one job, working 12 hour days and filling in days and nights. It was nothing. I would rest later. I was a mom that was full of energy and I thank God I had that time when my daughter was very small and RA didn’t come until here tween years. Yet, I often feel guilty that we aren’t out and about as much as I would like and often I get tired or hurt before a day of fun is over.

I’m okay with who I am and how I have to operate to preserve my body and my peace of mind. I have found that others, strangers, friends and family are not. I have pretty much embraced that RA has returned and it brought along some of it’s friends; fibromyalgia, osteoarthritis, and diabetes to ensure my demise. Epic fail indeed! I am still alive, well, and kicking. Albeit, in a different and new way that I am getting use to.

If I go home because I can’t go hard is that a strike against me? Am I the party pooper? If I need a break, a nap, or choose to chill when we are on vacation, am I boring? How so? What you eat doesn’t make me poop! So what I do shouldn’t make you constipated. What people like me want is your understanding, not your criticism. We don’t really want your sympathy, but your empathy and really I don’t need that. I prefer you to understand and keep the party going without me. True, I am the life of the party (haaaaaaa!!!!!) when I am in party and wilding out mode but, in reality the party goes on. So you don’t have to talk about us behind our backs and you can keep the rolling of the eyes, too. If you can’t adapt to the new me and yet I am the one carrying the load and I have adjusted my new crown, then I don’t think we can be friends.

Do what I do. Enjoy those moments when I am riding high. Cutting up and laughing. Enjoy those times that I can pull an all niter, when I am on the floor dancing (something I love to do) and I am hosting a party on my feet making sure you enjoy your night. Note, I will have to pay dearly for the physical things I do later and for how long and how bad is anyone’s guess. It’s a sacrifice willingly made. Google Rheumatoid Arthritis Disease, Fibromyalgia, etc.  to understand what your friend or person you love is going through and HOW it IMPACTS their life. Heck, (really wanted to say hell), talk to them and LISTEN. It impacts everyone differently.

In all your gathering of information, cures, judgments, undocumented medical advice and unsolicited advice, get an understanding by caring enough to understand the needs of a person you call a friend or family member. Know that I am always grateful and appreciative of natural remedies, exercises to help me, or even friends that call to tell me about a medication. I know that they are thinking about me.

get-understanding

~Nikki

 

Before You Get to the Edge. RA BLOG

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What do you need to do as a person with a chronic illness or dis-ease before you get to the the edge? The breaking point? The split second before bad attitudes, mean words, a frown forms across your brow, and just plain funk kicks in making your home or work atmosphere an unpleasant place. Before you have to “back track” and make apologies, amendments, and atonements, here are two question that may help you. But first, let me explain how this came to me this morning.

After my second night of restless sleep, I laid there pushing myself to get up or my daughter would be late for school. I slept with the breathing machine on (CPAP machine) and it was annoying all night. Tossing and turning with the “so and so” cord tangling around my arm and head. The wisp mask, even with the soft, light rubber around it, was hurting my face because fibromyalgia was awake, too. When I finally snatched it off this morning, I was tired before I got up.

When we have restless or painful nights it can make us feel defeated before we even roll out of bed. Defeated, before we get our day started. It can make us pessimistic, angry, moody, and we can began to bark out in frustrations to family, friends, significant others, children, and coworkers. I sat up on the side of the bed and thought to myself “I feel horrible. I wish I could get more sleep. Oh well.” To the bathroom, get dressed and I sat on the side of the bed putting my shoes on and I realized I was frowning. I felt heavy as I moved around. And then I asked myself a question that I already knew the answer to:

WHAT’S WRONG? WHY ARE YOU IN A BAD MOOD ALREADY? (your answer may vary but give yourself the full blown answer. Not the short answer)

Answer: I did not sleep well. I am upset that I cannot go back to sleep. I do not feel like being upbeat and chipper. But, I have to send my daughter off to school in the best mood possible.

WHAT DO YOU NEED TODAY? WHAT DO YOU NEED TO MAKE IT THROUGH THE DAY AND IMPROVE YOUR MOOD? (Your answer may vary drastically depending on the situation and day. You could be working, a full time at home parent, work for yourself, etc)

I need sleep! But I can’t go back so I need peace and quiet. I need the least amount of conflict and chaos. I can limit phone calls to and from people that are prone to give me bad news or talk too long, news and social media. I can eat a good breakfast. I can sit outside this morning for 30 minutes. Sunshine improves my mood. I can tell my daughter the truth.

Yes. Tell the people in your life the truth.

Me to my daughter: “Morning. Not to chipper or talkative this morning. Sorry. Rough night.”

Her: “Oh. It’s okay Mom.”

So before you get to the edge…

WHAT’S WRONG? – TELL YOURSELF THE FULL VERSION

WHAT DO I NEED TO DO FOR MYSELF TODAY THAT WILL MAKE THIS BETTER//GET THROUGH THE DAY?- NAME IT. LIST IT. DO IT.

AND BONUS: TELL PEOPLE IN YOUR LIFE THE TRUTH ABOUT HOW YOU FEEL WHEN IT’S REALLY BAD OR IF YOU’RE  JUST NOT UP TO PAR THAT DAY. I know we are always feeling bad most of the time and we don’t have to let people know that. However, when it’s one of those days when you wake up and can feel the ANGST check it (address it) before you walk out the door of your room.

~Nikki