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

Does Weather Affect RAD(Rheumatoid Arthritis Dis-ease) and Fibromyalgia?

 

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The hurricane is influencing the weather here in my city. I can feel it and it doesn’t feel good at all. I really need my hands today. You can’t tell me weather doesn’t affect joints or muscle. I don’t understand after all the research and patient information, discussions about humidity and barometric pressure, why doctors have yet to admit this and state it as fact. What more evidence do you need? It may not affect everyone, but it is a fact for many of us.

Yesterday, I took every unnecessary item out of my purse and I still could not put my purse on my shoulders very long. Switching it back and forth I felt like throwing it across the store. But, that may get the attention of security and brand me a “crazy lady.” I don’t want to be the talk at the table of employees of my local grocery store.

As I pray and donate to the victims in Houston, I put my pain in prospective. I think of all of the autoimmune warriors there who are experiencing a stress I pray I never have to feel. And today we pray for New Orleans. We do not want it to be Deja Vu. As for me and my unpredictable, growing pain in my hands, wrists, forearms, feet, and ankles today, I sit aside many things on my “to do” list and whatever I accomplish today will be enough.

~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

Sunday Morning Coffee Musing:RD/Fibro Blog: I Want to Play, Too

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You remember what it’s like to get sick as a child and friends are outside playing. You hear the laughter, you see them running around playing a game of hide and seek, or playing with their superheroes or dolls. You say to your mother, “Mom, I want to go outside and play, too.” She says, “I know honey. But, you can’t. You’re sick and you have to get well first.” So, there you go. Back to the window to watch your friends play. Until you feel well again.

This is exactly how I feel many times as I watch the events of family, friends, and other events that play before me live and in living color on social media. I sorely wish I were there, too. Creating memories. Laughing along. Right there in the moments captured forever. Especially, the very big moments and events. I and so many others who live with chronic pain also live with unpredictability of the symptoms. And there we are. Trapped in the house, until the symptoms subside enough for us to go out to play again with everyone else. You may be disappointed and you probably understand. But no one, and I mean no one, is more disappointed and upset or even as angry as we are. We are many times at the mercy of a body we cannot control. And, for the record, many of the other times you see us out living it up, selfies and all, we are smiling and playing through the pain. Tough guys and gals we are indeed!

It makes me happy to see others happy and enjoying life. I know I will be there in the moment soon again. When you realize it’s not about others or you and your pain all the time, but it is collectively about sharing in the joy and laughter of others lives that fills your heart whether you are there physically or through videos, listening to the stories behind each memorable moment and looking through photos. Energy is energy and sometimes you have to experience it at different frequencies. Accept and embrace. Sad that I can’t be there? Yes. But the happiness that you are there, friends and family are there, enjoying life is greater than my sad moment…that shall pass.

~Nikki

 

RA BLOG: Enthesopathy/Enthesitis

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It started in January and it has not left me yet. I thought it was “just” joint pain from rheumatoid arthritis in the left hip giving me a hard time and keeping me tossing and turning at night. Surely, it will go away. It didn’t and I tried prednisone because I thought I was having a flare. That didn’t do much. I tried naproxen and it didn’t do much either. It got really bad and then during the day, instead of going away it just dulled and would flare at time. I called my rheumy.

“Come in for a shot!” Oh no! I didn’t want that! But as I went the next day, he examined me first and said, “No. You don’t need a shot. You have an inflamed ligament. Let’s try physical therapy. Once in physical therapy, I learned the name of this condition: enthesopathy. The inflammation of it is enthesitis. I have that.

“In medicine, an enthesopathy refers to a disorder involving the attachment of a tendon or ligament to a bone. This site of attachment is known as the entheses. If the condition is known to be inflammatory, it can more precisely be called an enthesitis.”

Last night was awful. It had been nagging a few days. The new pain medicine did nothing. I got some relief with the heating pad. My concern is that this could be a permanent condition and there could be damage as I researched credible sites that said this could be possible for those with an autoimmune disease.

As I try not to worry about it much, and face these things head on, it is very difficult when RA seems to present an obstacle course on top of the obstacle of life.

~Nikki

Life is In (A Life and RA Blog)

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Whatever or whomever you believe to be your higher power is what sustains you in times of despair. I live a life that is often filled with physical pain, continuous doctor appointments with specialists, an ongoing fight mentally and emotionally to stay grounded, steady, and balanced. Add in your regular and unpredictable life plans. I am sure you have your own battles. So, you know where I am coming from to some degree we can agree that things get hectic.

One scripture that comes to me when life seems to put pressure on me, when the thing I am dealing with at hand attempts to snuff out my life (my joy and happiness, my optimism, my faith), suggest I’d be better off dead, or just weighs me down is this one: “In God I live and move and have my being.” It empowers me. It says, whatever it is that is making you “feel” this way, has no power over you and it is not what sustains you or keeps you alive. It says, “Move in me, with me, within you there I am, giving you this energy and power to LIVE (AND NOT DIE), MOVE (KEEP GOING/PRESSING FORWARD), AND BE (EXIST).

The ability to tap INto your source, God, and connect to something higher than yourself or your higher self (I’m not big on defining God for people as I believe in freedom of choice), in difficult times keeps your feet grounded to the Earth and your head or thoughts aligned with your divine mission. The fact that you have to reconnect or reaffirm, only suggest that you got so caught up in what was going on around you that you had a brief disconnect from Source. You “almost” forgot that God, Source, Divine sustains you. Or perhaps, your connection was weak and had gotten loose by the yanking and moving around of the cares of this world. Your thoughts. It happens sometimes.

I went for a walk today and walks are suppose to be peaceful. Yet, as soon as I stepped out of the car I felt pain in my left hip which I’ve been having trouble with at this young age of 42. My walk was not as fast and then my hands swelled half way. I was agitated and frustrated and please don’t tell me not to be because I think it’s necessary to feel so you can address it. As I thought “I am so sick of this! Sick of it! Sick of it! Sick of it!!!!” I really wanted to yell that out at the park. I kept walking and speaking to walkers and runners, the few that were on the trail. “I just want to give up.” I was walking my normal pace. And by giving up I meant trying to improve my health. “Flush all the pills. And just let RA run it’s course. Why would I get this at 8 years old. Like…for what?” Then, the scripture that caught my attention from the first time I heard it, and that comes to me often “In him, God, I live and move and have my being.” Next thought was “Right. RA has no power over me. It does not determine my destiny or “run” my life. It is not the boss of me. It does not get to take me out without a fight. It is not my life sustainer. I am. God is. I do my part. God does God’s part. I finished my walk.

~Nikki