RA BLOG/Anxiety: Walk With Me

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It’s Saturday evening and suddenly things begin to spin out of control. I am flustered. I can’t breathe. I am becoming irritable. I have things to do and many of those things won’t get done. I have only been gone for 4 hours and it feels like I have done a full day of labor. I hate Rheumatoid Disease and Fibromyalgia. I am frowning and I remember I took a prednisone pack and this has the propensity to change my mood dramatically but, no, no that’s not it. Thoughts swirl in my head. I am dropping things, the door jams, I curse, I get into the house and I see things are getting junky, I am angry that I seem to always run out of energy before I run out of time.

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When I worked for an adult mental health agency there was this phrase said to a patient after a “meltdown” subsided in order to move the patient from one area to a calmer environment. That phrase was, “Walk with me.” After I made my sandwich I sat down and I took a deep breath. Why are you so angry? I asked myself. It’s because I am so tired and I was thinking in the car not only about being fatigued, and all that I needed to do but, also about my current situation and what will I do if…you know…things don’t work out. Where will I stay? How will I survive? I started to imagine myself broke down like those who sacrificed their bodies to provide for their families. I felt sorry for them and then I thought they were mothers and fathers with illnesses, too. I thought about how sad and depressed I would be. Then I started to get angry with God for letting that happen even though it has not happened.

Walk with me…

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I ate my sandwich. I saw this photo I saved and I thought there is where I want to be at the end of days like this. Walking on the beach at sunset. Sending all of my thoughts and cares of the day on the waves. And then what would you do?

I would no doubt feel peace. I would return to my beach home and prepare for the night and the next day (Sunday). What would you cook? I asked myself. It surely wouldn’t be a lean cuisine warmed in the microwave. I would make a salad, pan sear some salmon, steam some veggies and pour some strawberry lemonade. Sounds good.

Walk with me. If you can steady your thoughts by steadying your breath and just take a mental walk somewhere else. Find a photo of where you would escape to and just imagine what you would be doing. So, as I came back to present, I decided on what needed to be done and what must wait. I feel so much better I didn’t go into a full anxiety attack or need the inhaler or remained frazzled and angry the rest of the evening.

#Expansion2018

~Nikki

 

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A Peaceful Saturday: Do Not Disturb

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It’s a chilly Saturday morning here in Memphis. Most of the snow has melted and patches of ice are still hanging on for dear life. It’s partly cloudy and my daughter is at her dad’s for the weekend. It’s a quiet morning for the most part and I don’t want to be troubled about anyone’s troubles today. I have had a very long and painful week that started last Sunday. I had oral surgery Monday. Tuesday the neighbors pipes busted…and wait…I don’t want to go on about this week. However, I did just get off the the phone with a person, whom name is being withheld to protect the guilty, on how they have these mountains of a problems today (two), which has greatly (not even barely) inconvenienced them. I just held the phone. Solved one of their “problems” by asking a simple question and listen to them solve the other. You know, before coffee I just don’t want an earful of woes.

At some point of a roller coaster week you have to get off. You have to carve out not just a moment, a minute, but an entire day. 24 hours of leave me alone. 24 hours of this is how the day will go. 24 hours of I can’t help you. 24 hours of I am closed. 24 hours of, sorry, that’s going to rush me, put me in a bind, throw my entire day off. 24 hours of I see your text, message, but I am not answering. I don’t want to think. I want to be quiet. I want to clean. I want to create. I want to eat good food. I want to binge watch. I want to listen to good music. A Do Not Disturb: It’s My Saturday.

RA BLOG: Bad Blood

It started as a good day yesterday. Even though, it was raining cats and dogs. I managed to take care of a few errands. I started to feel my energy wann around 3:30 P.M. I was going to go home and take a nap before a birthday dinner of a friend. Well, when I got up I felt my shoulder ache. No time for this. I took a shower and asked my daughter to put some cream on it (it’s like a icy hot) because I did not want to take pain medication. It wasn’t 5 minutes after she put it on I began to itch like crazy…all over my back and face. I knew I was having an allergic reaction and it was possibly setting off an itching flare (unexplained undiagnosed flare the doctors can’t determine why or cause). So, I took my last Benadryl and a Fantominide cocktail which calms itching fast (learned that from a nurse in the E.R. when it happened the first time). I had to cancel my plans to go out…so much for margaritas!!! But then around 11:00 P.M. I started itching again…and I had to throw on clothes, make a mad dash to the grocery in rain to get more Benadryl because I was out! My parents are aging, my brother was at work, and other siblings are older than I am blah blah blah…I was on my own. I never want to bother anyone i.e. friends because they live too far and even if they live close…they don’t seem as if they want to be bothered if that makes sense. I’d much rather you bother me, than I bother you.

I made it home. Texted family I was ok. I woke up this morning, but could not get out of bed. Talk to Mom, didn’t tell her I couldn’t get up (didn’t want to worry her=she’ll call everybody-everybody will call me-I don’t want to talk). I got up to shower and discovered my shoulder still hurts, including, hip and knee. I make it out the shower, to the kitchen, put breakfast on at 10:15 and soon realize, I can’t stand long so I push it and sit. And write to you…

I spent money for a very famous fashion show today because fashion is my first love. I did not have money for the all day events and I don’t think I would have lasted anyway. But, to now think I may not even be able to make it to this world renown fashion show is gut wrenching. It is this very moment, well, all night really, I wonder if I can do it. If I can still pursue fashion with this evil disease and at my age of 42. I think about giving up. I think of all the problems that would come with it. I think…if only I was not deterred at a young age to NOT pursue fashion, I would already be doing it and perhaps well established. I know I have the gift. I may not know #@$% else about myself, but I do know that. That is the one thing I have always been confident in and comfortable with.

Getting dressed, doing my natural hair, painting my nails, wearing heels, forcing myself to walk straight, walking a long distance…

For the first time I contemplate if I am in over my head trying to reach for a dream that will not die…

~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 Week: RA/Rheumatoid Disease and Mental Health

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A Lot on Your Mind by Evan Sheline

If you get a cold or the flu, it’s okay because in a few days or a week, you will return to your healthy self. In those days, it will be physically and mentally draining. After all, no one enjoys being sick even if it for a week. Imagine the nightmare of becoming ill with something you can not get rid of. Imagine the pain comes in all variables to be described as nagging aches to excruciating to kill me now. You can’t do all of the things you use to do and what you can do has to be modified. How will you continue to survive and thrive in this world? How will you continue to provide for your family? Will you be able to do all of the things you planned? Will people think you are lazy or have given up if you can no longer work? What about your dreams? What about your goals? What is this new diagnosis? And another one and another one as a result of Rheumatoid Arthritis Disease. What the hell is happening here? Friendships and relationships change. Marriages change. You’re too young for this. You were thinking about enjoying your retirement…without pain. What do we do now? Why me? I am sick of hurting. Can I have a day of no pain???

The matters of the universe swirl in your head and the weight of the world is your shoulders. The impact of RA on your mental health can be devastating. It was for someone like me who was already an emotional human being who has lived through some very tragic moments. Now what? Another thing to hide. Another thing to deal with privately. I don’t want people to know I am depressed. I don’t want people to know I am anxious. I don’t want people to know I stand on the ledge of suicide. They will label me weak. And you don’t want to be labeled weak in the African American community. Or crazy. We associate mental health issues such as depression and anxiety as “crazy.” Ah, the stigma.

What do I do? How do I deal with the mental impact of RA? I try to take it day by day. I put on my brave face and walked boldly into the psychiatrist’s office, the one that has a brown face like me, and I said “I am sinking. Drowning in this sea of emotions and pain. Help me.” And then we went to work. Because seeing a therapist is WORK. A good therapist, psychologist, or psychiatrist, knows the tools you need to cope with life’s tragedies. It does not, DOES NOT MEAN YOU ARE WEAK, it means you are smart to seek help. And those who say you are “weak” or “crazy’ are the ones who are in need of help and don’t even know it. I use the tools my therapist gives me. Daily.

I practice yoga to help mind to focus on what is right in front of me.  It helps me to control my breathing. It helps me to control my thoughts. It helps to keep me in the now.

Meditation. Get you some. It helps me to see into myself. I can assess myself. I can create my future. I can pinpoint in my body my issues.

Prayer. It is my lifeline to my Source. It is how I talk to someone, when I can’t talk to anyone.

A personal relationship with the Creator (yes Source, yes God and not the God of this or that religion, but GOD). A deep, committed relationship, a bond, a sealed union. This relationship gives me strength. It empowers me. It serves me. It is my refuge. It is my stronghold. It is a friendship, a parental relationship, that has stood the test of time with unconditional love…mostly on God’s end. God has never wavered in love for me. Even as I tossed and rolled like a raging sea.

All of these things keep me grounded and honestly, above the ground.

~Nikki

#rablogweek2017

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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