Day 3: RA/RD Blog: Disability

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Discuss your feelings about our position within the disabled community with variable disability.  How do you deal with limitations that are present some days and not others?

It’s a strange thing. One moment you’re seemingly okay and the next you’re in pain. You never know when you’re going to have a good day, a good few hours, or when pain and brain fog is going to kick in. You don’t know what part of your body is going to hurt and for how long. It’s enough to drive some mad, to depression, to anxiety, to God. 🙂

When I perceive I am going to have a good day or a good few hours, I start to do things I normally don’t do and sometimes I do them in a hurry just in case something swells or starts to hurt. A few weeks ago, I woke up feeling normal. I mean after I moved around, I still felt normal. I don’t know how to describe it, except feeling like I felt before RD. I didn’t know how long it would last so I started some intense cleaning of the kitchen, the downstairs bathroom and I made it to the living/den area before I began to lose stamina.

I deal with it as it comes. I no longer get angry. I do however, get upset sometimes. Especially, when it’s really something I want or need to do. I have to put it off or cancel. It’s hard to make plans, but I am a firm believer in making plans and following through. When I can’t follow through is when I am the most disappointed.

We also have to deal with people who may see us doing “regular things” or enjoying the life we have and question if we are really disabled. Disabled people have a right to enjoy their life, family, take vacations, shop, and do whatever they can on the level they can, when they can. You have no idea the things people go through in 24 hours.

~Nikki

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Day 2:RA/RD Blog Week ADJUSTING

Adjust – How do you adjust to the affects of RD on your career, dreams, goals?

Wow! What a loaded question. In the beginning it was devastating thinking about all of the things I may no longer be able to do. My exact thoughts as I had a melt down were “What about all of the traveling I wanted to do? What about sewing and fashion? What about writing my books and traveling as a motivational speaker?” How on earth would I be able to do all of that if I can’t even hold down a 9 to 5 or 9 to 1?

I first acknowledged my disappointment and sorrow as some things died and somethings were modified. I was in awe when hidden gifts and talents emerged, came to life,  such as my abstract art and crocheting. They both happened on a whim although painting was always in the background. I was in Hobby Lobby exploring the option of crocheting after I saw someone with a crocheted scarf. There was a woman in Hobby Lobby, a customer, that was in the same department and I asked her about it. She was so happy to share with me how to get started. I worried about my hands so I researched and reached out to a community of crocheters and knitters and they recommend so many crochet hooks to use and so much advice on what to do about hurting and swelling hands. It dawned on me that there are crafters who have RD and other illnesses that have blazed this trail. I am not alone.

The biggest challenges I face when writing and learning patterns is brain fog and I have a hard time connecting things in sequence or remember directions that I read or are being shown to me. I have to sometimes read it over and over. It can be VERY frustrating. Like throw the crochet hook against the wall or crying because my hands are swelling and I am trying to type a chapter for a new book. The best thing about working on my career as a writer is that I get to decided when I can write. I keep a notebook in my room and I use my phone’s note pad to jot down ideas that come to me. I am looking into voice typing software as well. At times I may be experiencing concentration problems, anxiety or depression. I can decide not to work on a project or to write or paint. However, painting is therapeutic. I like to wrap the spongy tape around my brushes or crochet hooks to make them comfortable for my hands. I pave myself.

Being disabled has limited my income, but it has not limited the God I serve. I work on my writing and try to re-invent myself as a speaker and author. I take it day by day and try not to worry about if I become successful will I be able to do it. What if I have a flare and can’t make an event, or show up on set, flying can drain me, etc. etc. I dial it down a notch and remember I am not at that bridge yet.

~Nikki

 

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

Sunday Morning Coffee Musing: The Good Daughter

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Growing up both of my parents were pretty healthy parents. I remember an occasional flu or a minor surgery. I can’t say I know what it is like to have to “deal” with an ill parent at a young age. I don’t know for sure how much it affects the child later on in life but, I am certain it makes a world of difference what the illness is and how the parent themselves handles the illness or disease. If the parent is any parent at all, they naturally carry a bit of guilt for being sick.

My daughter is 16 and it was seven years ago when Rheumatoid Arthritis Disease came out of remission and imploded into our lives. She was 9. I pushed on five years after that working, being a mom (because well you can’t stop doing that) and my daughter has always been the most caring and concerned child through this ordeal. And I have tried my best to make sure the unpredictability of RA doesn’t take a toll on her childhood as much as it takes a toll on my body and life.

When RA first resurfaced, we didn’t know what it was. I remember waking up one morning with the Holy Telit across the foot of my bed laid there by my daughter. I remember when I had to have surgery twice, she was ready to do her part. Through my crappy attitude at times and unbearable mood swings, she has learned to either let me know or just stay out the way. I have often, come back to apologize and try to make sure it doesn’t happen too often because I don’t believe you can use your pain as an excuse to be mean to others! But, it does happen unintentionally sometimes. You have to be the type of person that is reflective of self and responsible for your behavior. That takes deep commitment to being the best you, you can be and a whole lot of Jesus, God, Holy Spirit, Creator, etc in my case.

Yesterday, she took care of her mother. It was almost like she was prepared because she knew I had a class where I would have to use my hands and sit for some time. I didn’t ask her to do anything. She just stepped right in. I have to say, I have been blessed with a good daughter. I hope I am being the good mom. I hope I have been the good mom before RA came into our lives.

~Nikki

RA Blog Week Day 4: TGF Hobbies

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Birthing Autumn by Nicole Jackson 

Are hobbies important? You bet! Especially, when it comes to having an illness or disease that can zap the life and joy right out of you IF you allow it to. I don’t know if my hobbies are hobbies, so to speak. I mean since RA has taken a turn for the worse in my life I would like to think what may be considered as hobbies are really my lifelong passions that have been buried underneath the hustle of life and the bustle of a job. Most of my hobbies center around things I wish I would have done a long time ago or pursued.

Hobbies not only occupy your time, but should expand your mind and it should be something you enjoy. When I tend to my blog, one of my hobbies, I enjoy it. When I thrift and put outfits together, I enjoy it. When I find odds and ends, repaint them or repurpose them, I enjoy it. I get a great deal of satisfaction out of my hobbies. The things I don’t consider hobbies are writing (author), painting, crocheting and sewing. These things are more than hobbies to me. I view them as possible way to establish a new life since I have been left with me the remnants of my old life. Life, before RA. The core of who I am is still there. And to be honest, if RA had never came along and blew my old life out of the water, who knows when these gifts would have been reborn.

~Nikki

 

 

RA BLOG: Just Not Tonight

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Sciatica nerve, joint pain, fibromyalgia and pinky finger falling asleep along the side of hand up to the elbow, makes for a “hades” of a night. I had to get up and get an ice pack for my back. I did get up and I made it to church. There were some hard hitting pains there, too and in RA Warrior fashion I answered “I’m fine.” The pain for me has been on off today but now it seems like I am going to have a fibro and RA flare. They both move around the body. So, as I prepare to wrap up my night and prepare for a bumpy ride, I hope you know that in those nights, midnights, early mornings, you are not alone in your suffering. Some warrior, of some illness is suffering, too. Someone is praying for the subsiding of pain, too. I pray for them, too.-Nikki

RA Blog: What’s For Dinner?

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One of my favorite, simple, and easy things to make for dinner is pizza. We all know cooking with RD (RA) or any other autoimmune disorder can be tough and almost impossible. We want it to be quick, easy, and as healthy as possible. You want it now as well if you have had a prednisone dose (most of us are extremely hungry because of this steroid for pain)!

Well, this may or may not be healthy depending on what you put on it and what type of crust you use. In the one above it’s a veggie pizza. You can buy veggies already chopped or chop your own. You can look in the fridge and just throw whatever veggies you have on the pizza. Think outside the box and take a chance with veggies like carrots and cauliflower. You can buy any type of crust you like or even make your own with cauliflower. I used a flatbread crust for mines. You can choose your sauce and add cheese. The one below is a buffalo chicken pizza topped with bacon. Pizza nights for us are usually on the weekend or it can be whenever you are just not feeling up to cooking a big meal. Add a salad and enjoy.

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When making the buffalo chicken pizza, I bake a boneless chicken breast (season it with Tony’s seasoning), cut it into pieces (slices or chunks, most of the time my daughter does this because of my hands), and let it soak in a buffalo sauce. Any buffalo sauce will do. I let it soak for about 10 minutes and then I toss them onto the pizza. Baking times are usually on your crust package. Once it’s done, I top it with bacon (optional of course) immediately so it can stick to the cheese as much as possible ( I cook the bacon while I am baking the chicken).

~Nikki