Tag: Lupus

RA BLOG: A Blow to the Jaw

RAFibroOAEtc., Uncategorized

hook_punch_boxing_main

I remember a dream I had before Rheumatoid Disease returned to my life. It was a dream about losing my teeth as I was floating down a tunnel. I woke up horrified and started to pray. I thought it may be related to wisdom…I was wrong.

I’ve had a few cavities in my lifetime but, I have not had as nearly as many as I have had since RA. In fact I have had two teeth crumble and cavities in my wisdom teeth. They had to be removed yesterday and let’s just say it went down hill.

I have a great dentist with an amazing staff. Upon extraction both teeth split. The dentist had to cut around the gum also to loosen the teeth. I had to have gas to help keep me calm since I have developed anxiety (or finally got a diagnosis). It was still a nerve racking ordeal. And I had a very difficult time getting the socket to clot. I had to sleep in an upright position and that was impossible to be comfortable with RA, Bursitis in the hip and fibromyalgia. I had insomnia. Pillows were sliding and my mind was all over the place. Eventually, it clotted in the wee hours of the morning. I was up changing gauze and using tea bags. ROUGH.

I am 42 and I am ashamed to open my mouth as a speaker, a friend, a mother, a family member, and potential date. I would love to have implants, and I plan to, but at $4400 out of pocket this is not possible. So, what’s my next option? A partial. It’s obtainable. And if I wait a year insurance will pay some of it. I am not replacing the wisdom teeth of course, but the other two that crumble. Twice I have experienced TMJ.

This blog is an open and honest blog. So, here it is: I think I am pretty. I love my smile and now I don’t love to smile. I am insecure about my appearance and as a single girl I feel as if dating just got even more challenging. Even if I do get the partial, how will the person I meet feel about me not having all of my teeth? They may think it’s because I didn’t take care of my teeth. I did. I flossed. I brushed. I rinsed. What else can you do? I am not even that big of a sugar addict. Though I do have my moments.

Some say there is a link to RA and gum disease, dry mouth, or Sojourns disease and some say it is not. My dentist doesn’t think it’s RA but, it could be the medication that causes dry mouth and fosters the progression of cavities. I just found out that I do have dry eyes and my Rheumy prescribed over the counter dry eye drops. Sigh…I feel that I am falling apart at 42. And yet, I still have hope that all will work out for my good.

~Nikki

 

 

RA BLOG Week: RA/Rheumatoid Disease and Mental Health

RAFibroOAEtc., Uncategorized
a-lot-on-your-mind
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

rabadge2017

RA BLOG: Just Not Tonight

RAFibroOAEtc., Uncategorized

0efa02e645085875e0ca02f1f291d357

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

RA Blog: What’s For Dinner?

FOOD, RAFibroOAEtc., Uncategorized

IMG_20170714_192119

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.

IMG_20170715_133445

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

RAFibroOAEtc., Uncategorized

ya_vas_chochy_02

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: All Eyes on Me (Thee)

FROM MY SPIRIT, RAFibroOAEtc., Uncategorized

f1d71a2e7af99d1fae646b924d78a3dd

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.

~Nikki

Life is In (A Life and RA Blog)

FROM MY SPIRIT, RAFibroOAEtc., Uncategorized

87e5d67fba2d12dde68f5457ad85ae5e

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

RA BLOG: Limiting Pity Parties

RAFibroOAEtc., Uncategorized

Pity has a pit that is hard to get out of once you fall into it. If you’re going to dance around it, do so from a distance and make it less than often.-Nicole Jackson

d94906679f96a2fb7fe16a3556d6c65d

I can tell you to stop feeling sorry for yourself, never feel sorry for yourself, or that it’s okay to feel sorry for yourself. Either you do or you don’t or you use to. Perhaps you have a different personality and you never felt sorry for yourself. If this is you, then I might suggest you have some compassion, some empathy, or try to understand those that do.

Feeling sorry for yourself can lead you into a pit. There is a difference when it comes to having a pity party…parties must come to an end and the sooner the pity party ends the better. You see, if a person falls into a pit of pity then that is a very dark place. Some never make it out and it turns into a debilitating way of living and approaching life. It’s all about what you use to could do and all about what you can’t do now. It focuses on what RA or an illness or disease has taken away from you and not what you still have left. Or what you can obtain now! It’s all about your problems, never about solutions. It’s about “I can’t before you try” or a “I tried once and I’ll never try again.”

I’ll be honest with you. I’ve had some pity parties way before Rheumatoid Arthritis exploded into my bones. I am sure it was the talking of wise people, encouraging people, that said a combination of “You’ve got to get over this, get over it, feel what you feel, don’t feel, etc.”that lead me to a method that has lessened my pity parties and the time spent in them. The method for me is, depending on what has happened and the depth of it, is: PUT A TIME LIMIT ON IT and start shutting the party down. I can’t tell you not to throw one in the first place, I don’t control how you feel no more than you can control how I feel. But, if you are going to go there, know that you can’t stay at this party too long and no one else wants to stay too long either!  Your party can turn into a PIT! I limit myself to 5 minutes to a few days and then I have to, I must start working my way out, regardless of how I feel. REGARDLESS OF HOW I FEEL.

You work your way out by moving, physically. You work your way out with prayer. You work your way out with telling yourself the TRUTH about yourself (who God says you are) and not who others say you are. You build yourself up and instead of tearing yourself down. This is how you get out of the pit or shut the pit party down. You see a therapist, you see a pastor, you use the skills, you get a self help book, or you surround yourself with a support group. Whatever you have to do, you do it!  (But, it’s hard Nikki…well, don’t let that stop you)

~Nikki

 

 

 

RA BLOG:YOGA, Shoulders and RA

RAFibroOAEtc., Uncategorized

Practice these poses on a regular basis and you will have very little problems zipping up your dress, washing your back, reaching your hind parts (lol) etc when you get older. Or if you are having those problems now the more you attempt to do these, or even simply grasping your hands behind your back, it will get better.

Someone is going to say “I can’t do that!” Well, yoga is not whether or not you can do a pose exactly like it’s done…it requires that you do the best you can and work your way to the pose or as close to it as you can. Over time, you can inch your way up to the middle of the back. It’s a slow process.I still can’t do either one of these if you are judging by the photos on the right. Yoga’s a no judgement, no competition zone. You may not even be able to close your hands all the way. And the other pose, where arms come around in opposite directions to the middle of the back, you can use a towel to gently pull up.

gomukhasana-arms

~Nikki