Sunday Morning Coffee Musings: The Scenic Route to Becoming Fit

Photo by Nicole Jackson 2023

I have lost 14lbs since last March and I would like it to be 16lbs by March 2023. It has truly been a struggle as some of you know from my blogs. Gifted with the challenge of diabetes after I was diagnosed with Rheumatoid Arthritis Disease, a few years ago I lost 12lbs after taking a Nutrition class from a CERTIFIED nutrionist in diabetes and after the doctor added a new med. I was not really working out consistently.

I have chosen the scenic route to weight loss and being fit. I call it the scenic route as it’s a long, slow way to lose weight. It’s a journey I have chosen to see as exciting as I discover new meals and recipes. I see it as a new way of making better choices. I see it as a reward for when I work out and I don’t really want to. Having Rheumatoid Disease and Fibromyalgia makes it difficult but, that is no longer my excuse for NOT moving my body. Because of the disease of Rheumatoid and the mystery of fibromyalgia, I am not supposed to do high impact exercise. But that doesn’t mean I cannot exercise at all. I have chosen the old-fashioned way of a healthier diet and exercise. A lifestyle change.

I have no huge goal. Therefore, I am not hugely disappointed if I don’t meet it. I am not doing this for an event or anyone. I am doing this for me. I’m not trying to be the size I was before I had my daughter 22 years ago but, if it happens, great! If I fall off or make the wrong choices I am not too hard on myself. I get back on track and keep moving forward. I just want to be fit. Less belly. I want to do all I can in my power to age well.

~Nikki

Sunday Morning Coffee Musings: Housewarming

It finally happened. I had a housewarming for family and family-friends. And it was GREAT. We had a really good time fellowshipping with one another. Most of my immediate family is vaccinated and if not they have had their first shot.

It took me two weeks to prepare for one day because of physical limitations. Really, I started to prepare three weeks in advance. The last two days were brutal on my body and I had a few days along those weeks that were bad days and many sleep issues at night. However, I persevered. I also had help from my brothers, my daughter, and parents. I am grateful for that.

Today, I begin the process of recovery. It takes about a week and sometimes two weeks to recoup from an event like yesterday. Today, I feel like I have been hit by a ton of bricks. My body is exhausted. I am fatigued. I have a huge amount of pain and soreness. So, I have cancelled all plans for this week. I only have one goal, each day, for the next seven days that require my physical energy. I am also not taking any phone calls or dealing with any negative energy. It’s just not happening this week. No extra tasks for anyone else. This is the epitome of self care for those with autoimmune diseases. We must heed the lessons learned and the good advice given to us by others in order to preserve and improve our health.

Take Care!

~Nikki

Sunday Morning Coffee Musings: What Can You Do?

A few weeks ago I posted in a rheumatoid arthritis support group a tip on relaxation. One of the tips involved soaking in a tub to help relieve tension. And that is where the drama from the trauma began.

I define it as trauma because you must be experiencing some type of trauma that pushes you to release drama on unsuspecting strangers. Sadly, people that deal with you on a regular basis know you are about dramatization. They know that when they see you, you bring the drama. You see, in the comment section there were responses to my post like: I CANT SOAK IN THE TUB! HOW IS THAT RELAXING? I CAN GET IN BUT I CAN’T GET OUT. HUMPH, THAT IS SURE TO CREATE TENSION AND NOT RELAXATION. I AM TOO LARGE FOR A TUB. I HAVEN’T SAT IN A TUB FOR YEARS. NO WAY THIS CAN WORK. One lady even said to me I should have modified the post. I wanted to say, “Ma’am, I didn’t write the article. DUH. And you should have modified your thinking.” BUT…I respect my elders most of the time (because I don’t believe it’s okay to be 80 and say whatever you want to people). Also, the Spirit told me to be quiet. She’s traumatized by Rheumatoid and many other issues. This is her sadness, pain, hurt, gushing and lashing out.

Pause. When you see a post of something that you don’t like such as one that reads: “I love strawberries.” Do you hop on and respond: STRAWBERRIES ARE DISGUSTING. I HATE THEM. THEY ARE THE WORST FRUIT ON THE PLANET. CAN’T SEE HOW YOU EAT THOSE. Has it ever occurred to you, that post was not for you? I see people raving about things that are not for me. Unless I see a “what do you think?” I don’t bother UNLESS they are family or close friends. Many times, I don’t bother then. It’s one thing to say you don’t like berries or I am allergic but I wish I could eat them. It’s whole other thing to BASH and INSULT and have a total meltdown over nothing. A simple positive post or someone’s opinion over if they like pumpkin spice lattes (ugh).

Press play. I wonder did those people stop and think, I can do ALL of those other things except soak in the tub. Great article. No. They saw the ONE thing they couldn’t do and “went to town” about it. They didn’t think: “Gosh, I can follow all of these tips in the shower, in my shower chair, or however it is I get clean.” Nope. They honed in on what they could not do. The trauma of what I cannot do. The trauma of WHAT I USE TO be able to do.

This trauma is VERY real. I know about it. I live it and if you keep on living, as the elders say, you will know it, too, in some shape, form, or fashion. Sometimes, I think about my life B.R. (Before Rheumatoid Arthritis Disease) and B.F. (Before Fibromyalgia) and MY GOD! I miss ALL of the things I could do. Even the simplest things. Sometimes I stay in those memories a little too long and I become sadden, blue, depressed, compressed…oppressed. And then I have to free myself from those thoughts with therapy, journaling, talking to a friend, or…THINKING ABOUT ALL OF THE THINGS I CAN STILL DO and even if I have to modify them or have help they still can be done! “Glory to God!” in somebody’s southern church goer voice (:-D). You can heal yourself, or get some help, from the trauma of what has happened to you, whatever it is. The trauma produces the drama and quite frankly, people get tired of it. We know you are hurt but, there is a more EXCELLENT way to deal with it and release it. It’s called prayer, meditation, yoga, sound baths, therapy, Yeshua, Yaweh, spirituality, your choice of religion, forgiveness, etc. It’s called reading a books about it. Going to your temple, church, mosque, and REALLY walking in your religion. Developing a relationship with your Creator. SOMETHING! Something other than bringing the drama, spreading the hate and hurt. Lashing out has cause your relationships to be severed or strained.

What can you do? Huh? THINK ON THOSE THINGS. Think on the things you can do! Those things are TRUE, too. Those things are lovely. Those things “are” admirable. Those things “are” excellent and praiseworthy. Think about such things!

~Nikki

Brain Fog Leads to Cloudy with No Chance of Meatballs

I don’t know what happened last night (Sunday night) but, I was ready for a good night’s sleep. Instead I woke up through the night tossing and turning. In the early hours of the morning I had a strange dream and then I felt pain in my right shoulder down the shoulder blade and in the bicep area. The usual suspect. It was too early in the morning for pain medication because I had things on my To-Do-List and I did not want to oversleep.

When I did wake up, it took me about an hour and a half to get out of the bed. I felt heavy and groggy. I put one foot on the floor, then the other pain shot through my back. And just like that it was gone. I got coffee on, some breakfast on the stove and in the oven. I sat down at the computer to read some emails and I realized that I had no idea what I was reading. I decided to do some other business and it was becoming increasingly difficult to comprehend each sentence. I knew then it was brain fog. This is something I was determined to do today, needed to do and it took me forever to understand what I was doing. Also, reading instructions over and over. This is brain fog. It is mentally exhausting. Draining before you can get on with a productive day. Especially, it involves reading of any kind, comprehension of any information, even if you are just reading for pleasure it’s like, “What did I just read?” It’s not longer pleasure, but a pain in the butt.

My head felt like it was stuffed with cotton and my thoughts were trying to get through. I thought I could feel my brain trying to connect the dots and that translates to even conversations seeming difficult. I can hear my self pausing so many damn times I feel and sound stupid. Of course, I know I am not.

“How can I savage this day? How can make the most out of it?” I asked myself. I thought about something Iyanla Vanzant has being saying lately during this pandemic and quarantine, “Instead of fear, why not possibilities?” So, I said to myself, instead of agitation about what I can not do, instead of frustrating the hell of myself with all f the reading, typing, thinking, talking, etc of the day I had planned, why not see what else I can do that does not involve deep concentration. I slather pain cream on my arm to dull the pain. I decide to tidy up my work space,

I finish tidying up my room. I worked on a crochet project. I was able to take care of some other financial business as the evening came around and my mind seem to work better. I got plenty of water down to help. I also did yoga and meditation to help. This is many of our lives with Rheumatoid Arthritis disease (not Arthritis) and Fibromyalgia. We call it RA fog or Fibro fog. Yesterday, I think BOTH were at work. I finally gave in to pain meds tonight. I need a better tomorrow.

~Nikki

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