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.
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.
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
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.
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).
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.
It seems as if everyone else is whizzing right past you as you “mosey” along or perhaps you are not moving at all. Maybe, you are stuck. Well, I have goals because I set goals. I have dreams and new dreams, new visions, things I want to see happen in the face of Rheumatoid Arthritis, Fibromyalgia and all of that other noise that seems to slow me down and sometimes get the best of me.
In the effort to lose weight, to achieve my other goals as well, it seems as if the well abled bodied people are just flying right past me. Soaring to their goals, and I, I am left behind in their dust. Me? I’m struggling to stay motivated. I can’t walk that fast, like I use to. I can’t use my hands very well today, I can’t stand as long as I use to, the fatigue…it’s what some call excuses, but it’s a reality for many of us. We are not who we use to be and oh if we would have known this was coming, we may have did the 5K or went back to school sooner.
Q: Dear God, Universe, Creator, Self, Spirit, how do I deal with all the feels of being left behind?
A: Take your eyes off others and put your eyes on me. Keep your eyes on “your” prize. Stop the comparison. It’s unfair and foolish to compare yourself with well abled bodied people and it’s unfair to compare yourself to the old self. You can’t be in the past and present at the same time. This is why you are not progressing as fast or at all.
So, with that revelation, I invite you to meditation and prayer. Center yourself during the times when you are “feeling” so much despair and disappointment. If I keep watching others I will fall. If I keep comparing myself to others, I will fail. If I keep living in the past, I can’t work in the present to prepare for my future. All eyes on the Creator. All eyes on the scriptures, affirmations, practices, that center your heart and mind.
This is fresh off the press this Saturday evening as I am trying my best to wind down from disturbing news I received in my mailbox. Let’s start with this week has been pretty exhausting. A rollercoaster with more lows than highs and all that has been running through mind is “Please, God, let me off of this thing.” No such luck.
My daughter’s 16th birthday is coming up and I have been stressing over how to make it special for the past few weeks. I am going through the disability process in Tennessee and I have been for the last two years and two months. Before I was diagnosed with RA (diagnosed with JRA as a child), I was a working single parent. I promised my daughter to take her to California when she turned 16 as it’s somewhere she had always wanted to go. Well, we know that is not possible during this time. So, we planned to go somewhere closer and with the help of my brother to drive. I can’t tell you the amount of stress, struggle and strain it has been to gather finances from all over the place. To beg and borrow it seems to make this happen. I received terrible news from the school that my daughter had been placed in Algebra II instead of Algebra I and they are just now discovering this! She’s in a honors program. No wonder my poor child had been struggling! And I had been so hard on her. I was livid! Today, I opened up the mailbox to find she would not be allowed to continue in the program because of her GPA. I was outdone. She will have to take summer school class for Algebra I because she must have it. But, how unfair for them as Algebra II is the main cause of her GPA drop. I sent an email to the principal and hope they can see their error and what it has cost my daughter.
Today, I feel my depression in the shadows. I have done the best to keep it at bay. I cannot tell her this right now as she is so happy about taking a trip in a week or so for spring break to celebrate her 16th birthday. She will be crushed and I do not want her spirits crushed. My daughter is very smart and bright. And today…with RA, financial stress, and worried about my daughter’s future, checking the mailbox daily waiting on a word for a day in court about my case, it all just seems to be weighing on me. It’s a bit too much and I just hope someday I can look back and forget the last two years of this hell.