Day 5: RA/RD Blog: Buddy

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Buddy – Who’s your RD buddy?

I don’t have a pet or object, blanket, etc. that helps me, perse. What I do have is a Rheumatoid Disease group that I am a part of. This group is very interactive and supportive. There are people in it from all over the globe. For it to be so large, it seems tightly knit. It has it shares of woes, but those fires are usually extinguished by the administrators of the group. GREAT ADMINS is what keeps a group GOOD.

I found this group upon the return of RD, when it came out of remission. The Arthritis Foundation and Creaky Joints kept me informed. But, it was the community of Patients Like Me and RD Online group that is more like a buddy. I also go there not only when I am at my lows, but also at my highs and to uplift, support, others. It’s a give and take, an ebb and flow of the group that keeps me going.

~Nikki

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DAY 4: RA/RD: Community

 

Community – Our community is often hard on each other, even going as far as accusing others of not having RA when they can physically do more than others. How can we educate our own community on RA and how it affects each one of us differently?

I find the ones who seem to do the most accusing are the ones that are:

  1. Uneducated about Rheumatoid Disease and only know the basics, if that
  2. Have not learn to accept the spectrum of which they fall on as it relates to RD

We can educate our own community by blogging and joining RD groups and posting informative information as it relates to RD and from credible sites. We have to stick together and celebrate those who don’t have it as bad as one of us may have it. Also, there is someone that has it worst than you do and one must be grateful. We must learn to find the silver lining in our diagnoses. Sometimes, that means just being glad that we are still alive and here with our loved ones.

~Nikki

 

 

Day 1: RA/RD BLOG WEEK: DEALING

Dealing – How do other diagnoses impact your RD and its treatment?

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I was on my second and current Rheumatologist when I found out my previous Rheumy had diagnosed me with fibromyalgia. Imagine my surprise! I developed diabetes AFTER my diagnosis of the RETURN of Rheumatoid Arthritis DISEASE. I was first diagnosed at 8 years old and it went into remission after middle school and returned when I was 35. In the process of a surgery for Halladux Rigidus (Nodule develops on the big toe joint and causes PAIN, erosion, etc.) they doc said “Oh I removed the build up and I could see the arthritis and OSTEOARTHRITIS.” I also found out this year I have osteoarthritis in the joints of my fingers.

How do these things impact my RD? The fibromyalgia and RD was hard to differentiate in the beginning. I would have muscle pain and joint pain and I didn’t know if I had muscle pain because of the joint pain or if I had joint pain because of the muscle pain. It turns out that fibromyalgia, or any other thing I have can cause my RD to flare or cause me pain. My body is so confused about what is pain, when the pain requires an attack or not, how to receive pain and process pain, it doesn’t know what to do and when to do it.

It has made treatment very challenging to make sure some meds do not interfere with others. Some meds are used for the same thing. Also, when one thing is out of whack, like diabetes, it causes neuropathy and then fibromyalgia can kick in. Also, if I am dealing with anxiety or depression it can cause flares with fibromyalgia and RD. I have had both to flare at the same time and it is like being in a blizzard or a natural disaster of the body.

What makes the difference for me, or how I deal, is to differentiate between fibro and RD and I did that by learning (reading and researching from CREDIBLE sources) about each one. I treat fibro with pain cream, ice packs or hemp oil massage. I use pain medication or steroids for RD pain. I address diabetes by managing it. I address anxiety and depression by seeing a therapist and applying the skills taught to me by him that helps me to cope. I am spiritual and that helps SO MUCH. I meditate. I pray. I take pain meds for joint pains. I take my meds regularly ( I was not doing this at first because I hate pills but now I even take an injection I give myself). I put my CPAP on at night to help me to rest and if I need sleep meds I take them. REST is important in helping to prevent flares, pain and it’s important to rest to recover from flares.

It’s “alot” I know, but it is my life and I believe to approach it from a realistic and faith-based perspective gives me the balance I need to stay afloat.

~Nikki

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In rheumatoid arthritis, the body’s immune system attacks its own tissue, including joints. In severe cases, it attacks internal organs.
Rheumatoid arthritis affects joint linings, causing painful swelling. Over long periods of time, the inflammation associated with rheumatoid arthritis can cause bone erosion and joint deformity.
While there’s no cure for rheumatoid arthritis, physiotherapy and medication can help slow the disease’s progression. Most cases can be managed with a class of medications called anti-rheumatic drugs (DMARDS)

Organization. The Little Things.

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I admit it. One of the things that I can never seem to keep organized is nail polish and all of the things that I need to do my own manicure and pedicure. It’s more of a challenge for me than ever to do my own pedi and mani because of the problems I have with my hands. I will go to a nail shop when I have the money and when I do not, I have to grin and bear doing it myself.

Which leads me to organization. I know it doesn’t look like having my nail polish in a crate, piled on top each other is “neat”, but I don’t mind it not being organized by color. I am just happy to have it all in one space! So,  I had a tub laying around and decided to put all things pedi and mani in it and add my crate to it. After I gather things from everywhere (linen closet, different buckets, and my room. I now store this underneath the bathroom sink. I actually had NOTHING under there. DUH ME.

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~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

Disability and Reality Head on Collisions

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If you have been following my blog, then you know I am real, honest, and sometimes raw about what I think and how I feel. I am not here for the shock value, I am here because I love people that are honest about their thoughts, feelings, etc. Honest, not rude or mean or nasty. Just the plain old truth. So let’s dive in.

I hate being disabled, but I am grateful that I won my case. I hated my last job, but I was grateful that I had one and it could provide some income. I wasn’t making much and that job was killing me on every level. Yesterday early in the evening I thought I was having some sort of breakdown. I was going down slowly and then boom! I was falling down a dark hole that seem to never end. I reached out for help to a friend that wasn’t available. I reached out to a professional associate, she answered and provided a rope to pull me back to ground. I realized AGAIN yesterday, just how being disabled can restrict, constrict, and confine you financially. It can halt your endeavors. It makes me angry. It makes me sad. It makes me fell worthless. It makes me irrational. It brings up things from the past and shoves them in your face. Sometimes, down your throat. I felt like I could not breathe yesterday. It was anxiety mounting up to a panic attack. And depression was hovering around like a drone.

Before this episode, I had an encounter with a relative. Then I discovered just how limited I was  because of my disability with an endeavor I was trying to start up with a friend. And there came these waves of tears in my eyes that I fought back. By the time I talked to my professional associate, I told her 1st of all, I am crying. Secondly, I am ashamed that I am crying. Crying in my childhood was often made fun of or pointed out by my mother. “She’s so sensitive. She will cry if you look at her.” I thought something was wrong with crying. I also didn’t think it was funny. So crying to me can sometimes bring up a need to apologize for crying. In essence, apologize for being sensitive and weak (according to society, some friends, and in relationships). I do know a good cry is cleansing.

Rules and regulations for disability are necessary. They keep most people from getting over on the system. However, for those of us that wish to do things to help ourselves, it’s often a challenge to figure out exactly what we can do. It’s also a shock sometimes to find out you can’t do certain things and therefore you can’t reap the benefits or joys of those things.

This morning my ground is shaky. But, I am still here. I am still fighting and coping with my thoughts and emotions. This is REAL life. This is a MOMENT that I have to work through. I am fragile in this state and I know I have to protect my mind.

“Weeping may endure for a night, but joy does come in the morning,” -Bible

I am really ready for morning.

~Nikki

Friday Jr and The WKND Weekend

 

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Well, I had such a busy weekend I am just now getting a chance to sit down and blog about it. It was Thursday, also known to many as Friday Jr. (smile), that I got up the nerve to show up at a Memphis Bloggers Exchange Happy Hour. It was sponsored by the Nashville Bloggers Exchange. The place we met up at is new to Memphis. It’s NOT a club, but a place where you come to hang out, have great drinks, great conversations, good food, relax and unwind with friends or you can fly solo. Service was top notch from our entrance to our exit.

First, let me tell you when I walked I was nervous. Why? Well, if you have followed my blog for a while you know I have been through a rough few years. I was worried about meeting new people. Something that use to not bother me as much before Rheumatoid Arthritis came out of remission and brought fibromyalgia, osteoarthritis, and diabetes with it. Long story short, it changed the game as far as friendships, my social life, and the how I deal with people all together. Well, after walking into therapy with anxiety on level 8, giving myself all the reasons I should not go, I left with anxiety on 2 and all of the reasons I should go. I am so glad I did! I made so many great connections and diversified connections at that. These are just a few of the bloggers, writers, vloggers and photographers that were at the event. These wonderful group of ladies and more are right here in my city and now we are connected via social media.

We were invited to not only meet up, but to take photos, blog about our experience at this new hot spot in our city. We were able to try their entire menu! And everything was delicious! The cocktails were worth the money and I say that because if you are going to pay $10-$15 or more for a cocktail, you want your money’s worth. Tiger’s Blood Cocktail is what you see pictured above. I liked it so much I had two!

We were able to explore the venue and take pictures. You can reserve the booths we are in and they have several packages to chose from. They are also now serving brunch on Sundays! I love a good brunch! The patio was my favorite. It was very chilly that night, but the fire kept us warm as many of took advantage of photo ops. We were snapping it up and especially with a photographer on hand we got some great shots of our selves!

This was definitely a busy evening. I left there and drove across town to meet another group of ladies and we had karaoke, food, and wine. You know that had to be filled with laughter and great meet and greet. It was all positive vibes.

As the weekend rolled around, Friday I was invited to a movie. Saturday I purchased a small bookshelf from Facebook Market. I drove downtown to get it. I stopped by the Mississippi River to finish up my coffee from Starbucks and then off to ACE Hardware for paint. This was going to be an easy, less than 30 minute project.

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I painted the faux cherry wood bookshelf a dark espresso color that matches my new furniture in my room. It was the perfect size.

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And for the finale, Saturday night was epic and crazy fun. I went to a tribute for Bob Marley performed by some amazing reggae, funk, soul bands from my city, Memphis. It was a friend’s birthday week and I invited her to get out and enjoy herself. We met up with two others and it was so much fun. Too much fun lol! We ended up at iHop and I haven’t been there in about 15 years. I made it home safely and Sunday I slept in. I was home all day recovering from a very long week as I was at the hospital every morning with my dad and then coming home to do my own personal business and parent. Add the weekend to that and you have a run down chic! I was feeling the pre-pain before the big earthquake that landed Monday evening. Serious pain and mental drain. I have a heel spur I think from walking the long walk daily last week to and from my dad’s hospital room and serious back and hip pain radiating to the thigh. I know for sure my back and shoulder is a fibromyalgia flare. Nevertheless, I wouldn’t trade that wild and crazy weekend for anything and it brings me great joy to be there in the mornings for my dad to help or keep him company until he can home.

~Nikki