A Day in the Red Zone

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A day in the red zone can range from feeling like you are drowning to feeling like you are falling down a deep dark black hole that has no bottom. Today, I felt like I was drowning which I consider, lucky. This is not so lucky for others. It’s really not lucky for me, but let me explain. When I feel like I am drowning, I feel like I am fighting to stay above water, to stay in the game of life. I am trying to listen to something positive, read, watch TV, talk to someone, write in my journal, do some yoga, guided meditation, affirmations, pray and to sit outside. When I feel as if I am falling down the dark hole I have nothing to hold on to or very little. I do not know when or if I will hit the bottom and if I will be alive or sane. I do not want to do any of the things I mentioned before. And I don’t. That to me is worse than the feeling of drowning in my thoughts, experiences, and emotions.

In the black hole, there is no hope. You may feel pain, you may feel numb, and I have felt the worse feeling which is darkness. I know it’s not a feeling…but it is. Today, I tried to do all I could early on to uplift myself out of this red zone. It was frustrating because nothing seem to be working or it worked for the moment then quickly passed. I also was in shoulder pain and hip pain that didn’t go away. I tried eating fresh fruit, opening up the door and windows to light. So, I decided that I would just wait until the storm passed. It comes with a thought that says, “I can’t wait until this day is over.”

So, in my searching for something to express how I felt about depression today, I found this explanation on Pinterest. I shared in on my social media to help others understand what people like me go through. At least, some huge part of it. Then I decided to write about it as I watch NCIS. I am glad the day is almost over. I pray and believe tomorrow will be better.

~Nikki

Sunday Morning Coffee Musings: The CIRCUS of Life

 

The circus usually comes to town once a year. Sometimes, two or three times a year because there is more than one circus company. And let us not forget, the circus has a schedule of dates as it travels city to city. The circus, chaos, confusion, drama, confusion, whatever you want to call it, comes to all of us occasionally. Some of us live under the big red tent. Some of us look for big red tents. Some of us are drawn into it by the sounds, the smells of popcorn and cotton candy, or the weird music. It’s not until they bring out the animals we smell the poop.

Here we are in a big global circus. Shrink it down to your country, your state, your city or town. How much control do you have over what others do? Some want to to control because of the false sense of power they feel, but I believe some want to control out of a false sense of peace they feel. You see there are some of us that want everyone and everybody to be calm, at peace, happy, so that we can be calm, at peace, happy. Therefore, we try to control situations, people, influence their choices, etc. We get angry when we can’t. We get upset, anxious, we worry compulsively at times. It is okay to feel these feelings but I don’t recommend making it a lifestyle.

Here is what I know about the “Circus” or Chaos outside of my home, outside of my personal being:

  1. I cannot control other people.
  2. I can control my response.
  3. When I see what I feel is chaos, madness, and I cannot do ANYTHING about it, I repeat these words: Not my circus, not my monkeys.

The Circus inside is also filled with worry, concern, fear, and you have to find the root of that. Perhaps someone you love died or became ill because of something someone else did. Maybe, you didn’t have control over what happened to you, a loved one, etc. as far as an illness, accident, tragedy. Perhaps you, a child, someone you care about has an autoimmune disease, weakened immune system, or they are elderly and you are concerned for their well-being. Maybe you are just that person that worries about everyone. That worry, that fear, anxiety can be a barrel of monkeys on the inside. You are the Ringmaster of that circus. These thoughts, those fears, are your monkeys.

Here are a few ways I help myself:

I did what I needed to do to keep myself as safe as possible. I am at peace with this.

I did what I needed to do to protect my family. I am at a peace with this.

I did what I could, said what I needed to say to my family outside of my home, my friends, and associates. I am at peace with this.

I don’t have to agree with the actions of others in this matter, the choices they make. They don’t have to agree with my actions and my choices. I am at peace with this.

What they do or don’t do can affect me, it can affect others. However, I will choose peace by choosing prayer, meditation, affirmations, disconnecting from social media, turning off the news, making healthier choices, exercising. I choose peace by connecting with those that feel the way I do or those that are encouraging during this time. I am at peace with this.

When approached peacefully about my stance, I choose to engage peacefully or not at all. When attacked or approached negatively, I choose to respond with silence or wisdom. Silence is an answer and it is also wisdom. Do not go to their Big Red Tent. Do not buy tickets their circus. Do not be pulled in. I am at peace with this.

I can’t meet everyone at their level of understanding. If you argue with a fool, there are now two fools arguing. Do not be curious about this noise coming from the tent. It is a monkey. It is not your monkey either. You’ve seen this show before. You’ve been to the zoo. I am at peace with this.

~Nikki

 

 

 

Sunday Morning Coffee Musings: Mastering Anxiety. How I Survived a MRI

 

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Photo from Paris Trip

If you have ever had a MRI then you know how narrow and claustrophobic the huge machine can be. I didn’t have anyone to drive me so I could not take a sedative. But I really needed this testing done and I knew I would have to go all the way into the machine for almost an hour.

I didn’t sleep with my cpap machine on that night in the hopes that I would be drowsy enough to dose off once in the machine. Well, that helped. Once I was in the machine I quickly closed my eyes. I could feel my arms against the cold machine and I knew my face was only inches from this confined capsule. My first thoughts: “What if I get stuck? What if they can’t get me out because the table that I am malfunctions?” This may seem funny now, or to you, but to a person that has anxiety it is a very serious matter at the time. No matter how irrational it is to you. This is also where things go wrong with those who “don’t understand it” and the religious sector. This is the “Oh that’s sounds ridiculous. Now you’re talking crazy. Just pray. Think Positive.”

Mind you I am still learning how to deal with my anxiety. It hasn’t been long in my opinion since the diagnosis and when I look back over my life, if I only would have known that this is what was happening to me, I think I would have been so much better off in dealing with life. Instead I was labeled, emotional, a cry baby, weak, dramatic, and while I am proudly emotional now, and definitely can be dramatic (Hey, it’s part of my zodiac and artist DNA!) , it did not help me to understand what was happening. I suppose the double barrel is, “Black people don’t need therapy and if you are a Christian, you just pray about it. Use your faith.”

Back to the story. It is at that junction, of what ifs that I take deep deep yoga breaths until my heart rate starts to slow down. I focus on the breath. Then I address the thoughts. If I get stuck in here the table moves manually. What if the table doesn’t move manually? How do you know that? Did you ask? You should have asked. If it doesn’t, I can scoot out and they will help me. Whew, problem solved. Thank God I have been semi working on my weight. I do actually chuckle here.

I was aching that morning from joint pain, fibromyalgia, and muscle pain. I didn’t take any pain medication. I decided to first pray in the MRI tunnel. I prayed about everything and then I prayed for people, the Covid 19 plague (is what I call it). I prayed and gave thanks about my destiny, calling, lack of a love life, etc. I cast my cares and concerns on God. Then I meditated. I was at the beach. I envisioned my life, the way I wanted to see it. Then the lady interrupted me saying, “Okay. First part is over. You are doing well. Now, the table is going to move you all the way into the machine.” Me: “Okay.” Heck, I thought I was all the way in!

Part two: I finished meditating, never opening my eyes. I thought now what? I guess I will think about what I will do when “outside opens back up” and that means, when quarantine is over. I did that and then I did some affirmations. I know I dosed off several times during the hour I was in there.

I was so happy to hear the lady say, “That’s it! You did great for someone who is claustrophobic and has anxiety.” I told her, “I am surprised. In the past, when faced with tests like this or similar, I don’t always fair so well. I will take this victory. I did a lot of work in that machine to stay still and not panic.”  I just started telling myself days before the appointment that I could do it. I had to do it. I need to know what is causing constant pain in my hips, legs, shoulder. I need to know.

TRUTH: I didn’t just do a lot of work in that machine. I have been doing the work all along. I have been practicing meditation. I have been practicing the techniques from therapy. I have always prayed, but I have learned and I am learning to improve my prayer life. I have been listening to more positive videos, reading more positive things. I mean over years on the prayer and positive things. I can tell you that I have dropped off, “failed” techniques, just didn’t use them at all. It works more often than it doesn’t. It is because we are human. It is because we are faced with some things we have never been faced with and scales we have never dealt with. Yet, we get back on path. Crawling or walking. We get back on with life.

So let us, me, rival in this huge victory. Because last night, I had a battle with anxiety and it wasn’t pretty at all. Yet, I rise to focus on this victory from Thursday. One battle at a time, but I felt like Thursday’s MRI was a battle for the history books. It was like the movie 300! and I was fighting on that thing in the middle. I won. 🙂

~Nikki

Sunday Morning Coffee Musings: Anxiety; Time & Space

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What’s the last thing you need when you’re coming down from a big disappointment? You guessed it.  Another disappointment. Granted it was minor in the bigger scheme of things, but I also look at the fact that I am a highly sensitive person that feels things on levels many do not. I also factor in that it takes me longer to “be okay” about certain things, to process it all. Even small things.

I first decided that I was not upset, but that I was disappointed. The infraction appeared to be unintentional. There’s this quote that says “Accept the fact that some people didn’t intend to let you down. Their best is just less than you expected.” -Thema Davis. I think the person could have handled it better and I sense there is something else going on. When this happened I was really disturbed and plagued with all sorts of negative thoughts about myself, life, and this of course spurred anxious thoughts. I went to bed after meditating only to be awaken by noise in the attic (A squirrel. I guess.) Yesterday was tough, a beast to deal with. I cleaned, washed, cooked, but all day was a battle of the mind and mood swings. I was glad my daughter was invited to a party later in the evening and spent the night with friends. This is the holiday season, a joyous time, and I was growing weary from trying to “be okay.”

I can’t rush my feelings to get to the I am okay segment. But what I can do is do everything I can to assist it to an at peace state. Challenge or question the thoughts in my mind. Are the thoughts true? If they are then what is the solution, action, to change them? Maybe the action is to “not do that again.” Maybe the solution is to remove the person from life. Maybe, give the person the benefit of the doubt, extend grace and mercy. Maybe the best thing to do if affirmations aren’t working, scripture isn’t working, meditation isn’t working, etc. is to SHOW MYSELF COMPASSION AND PATIENCE. DING DING DING.

Compassion and patience is what I need to get to the other side of this. It sounds like this: “My god Nicole. It’s no wonder you’re taking this so hard. Look at what happened to you this year. That was tough to deal with and you’re not even quite done digesting that! It’s like chewing with a mouth full of food and squeezing one more piece in. You’re choking. Sip some water. Breathe. Let that little bit go down. I think it went down the wrong way, but it’s okay. You’re still alive. The hurt will lessen. You know you are extra sensitive with all of that creativity pumping through your veins. So, give yourself some time to be okay. You need space to heal and deal.”

It looks like: Getting up. Getting dressed. Eating. Deciding what things on the list of the day are the simplest to do. It looks like temporary distractions such as TV or Music. It looks like sleep. It looks like positive YouTube videos, meditation apps, affirmations, and maybe chatting with friends. It looks like crying because that is release. It looks like forcing myself to church or an event or not forcing myself.

Time and Space.

~Nikki

 

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

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

 

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

Sunday Morning Coffee Musing: Accepting an Ever Changing You

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All of us have changed physically as we are all aging. Some of us however, have changed physically and it’s not because of aging, but because of some situation, circumstance, accident, incident, illness, or disease. These are the UNEXPECTED changes that affects us physically and mentally. We all seem to have the initial shock of it all, but not many of us embrace it with the same attitudes. Some of us unwillingly accept it in our own time and in our own way. And still, some will never accept it and wither down into a path of despair. If you see them, try to encourage them along the way.

Who’s going to want me after they find out, or see, this or that? It’s a valid question. We live in a judgmental, stereotypical beauty, pretend perfect world. We ourselves have been judgmental perhaps. It’s a terrifying question even if you are married. Will they still want you and how will this change the marriage? Not all remain. Even friends dwindle and relationships fade. Insecurities rise and self esteem tumbles. Imagine not having much of that to begin with and we are looking at developing or increasing anxieties and depression.

Here is the question I ask you, “Do you accept you as you are now?” Maybe you are at the EMPHATICALLY yes stage and maybe you are a definite NO, or somewhere in between. If it’s no or in between then begin the work, yes work of ACCEPTING you as you are. The slow EMBRACE of change, and the ever changing you. Even with my unexpected changes in life, guess what? There will be more. There will be the regular changes of aging and sometimes that happens during the acceptance of the unexpected. A doozey, I know! But acceptance of yourself increases your confidence and helps you brave the fear of the unknown and face the reality. You may not be accepted by someone because of an illness or what you look like now. It may be “too much” for them. Or, you just may be accepted by those that understand and those that can see you for who you truly are or have become.

My journey of acceptance of who I am now was overwhelming. Much like others. However, I am here to tell you that my feet are on solid ground most days. And on the days they are not, I get back up.

~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