Tag: JRA

Unsteady: Depression and Anxiety

FROM MY SPIRIT, RAFibroOAEtc., Uncategorized

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From depression to PSTD (which is not just for soldiers), I think about how unsteady the mind and emotions can be. I think about how physical illnesses can create a certain unsteadiness in our lives. We are often trying to hold onto ourselves and others. We are often seeking someone to hold on to us during those times the winds start blowing in our lives and the oceans of our emotions start to rock and the wind of thoughts began to blow. It’s a scary state to be in.  A very fragile state.

You are trying to stay afloat. You are grasping for your tools to help you pull through. You hope you make it. Sometimes you do and sometimes you don’t. Sometimes you wish someone would simply hold onto you and give you the balance you need and at the same time you don’t want anyone around. (Side Note: If you are the person trying to hold onto the unsteady person, sometimes your presence, YOUR LISTENING EAR and your silence and your prayers ARE THE ANCHOR).

Last night I found myself overwhelmed with helplessness as I could not help a parent who is suffering from an illness only to come home and open up a letter of disappointment that sent me thinking about a decision I felt pressured to make. I opened another letter of a bill that was greater than I imagined and could afford. I then hopped on social media to find out about a horrific death of a doctor that saved my life in 2001. It was too much. The stress, the anxiety, the fear, the concern, the helplessness, the anger, was coming in relentlessly like pounding waves. I was between crying and throwing something. I needed to talk, but to who? I don’t trust people. People don’t understand. To God? Eh….not right now. I just don’t have words. I am grasping for something to pull me out or keep me afloat. And then the stress brought on physical pain. I read. I cried. I prayed. I cried. I listened to music. I cried. I went to bed. I woke up.

I think I just stayed afloat. I think it was the Creator and my angels…they love me enough to not let go. And I love myself enough to not let go of me.

~Nikki

 

REBLOG:RA – Rheumatoid Arthritis-The Lost Understanding-Why We Truly Deserve — RA AND THE FAMILY FIT

RAFibroOAEtc., Uncategorized

Complicated though it may be, there is no reason known why Rheumatoid Arthritis shouldn’t be UNDERSTOOD. Will people ever understand what it really is. Will they ever truly get that it is simply not the arthritis they have come to believe that it is. Though arthritis is a word in our diagnosis, it is far […]

via RA – Rheumatoid Arthritis-The Lost Understanding-Why We Truly Deserve — RA AND THE FAMILY FIT

RA, Friendships, and Relationships

RAFibroOAEtc., Uncategorized

When I first developed Rheumatoid Arthritis one of the main things I was worried about was relationships with the opposite sex. I was worried about everything! During a counseling session, the counselor said, “If he doesn’t like you for who you are, if he can’t love you for you, he is simply not the one, end of discussion. You are probably more worried about being seen as weak or needy given you have a superwoman complex.” In my head response:”Well! I never!!!!”

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So as I cleared my throat, and swallowed that chunk of truth, I responded with “Superwoman complex? Do tell…”

Anyway, as life has gone on, it’s been easier to say “Hey, dude, I have RA and blah blah blah.” Most guys are like “Oh, okay. No problem. What do you need? Do you need anything? How are you feeling today? What movie do you want to see? What’s for dinner? Etc etc….” They don’t care much. You get an occasional jerk, but I figure he was born that way.

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To my surprise, relationships and family have not been the hardest thing for me. The hardest thing for me has been developing and on going friendships. First of all, I don’t take the word friend lightly. It’s in a category with love. I do use it when shared energy is among myself and another person. I hope you can understand that.

Friendships and associations were and are difficult for me. I was use to being everywhere at one time. On the go. Move move move. Let’s do this. And somewhere as a person with RA or Fibromyalgia you began to lose a connection with some people because:

1. They don’t get why you hurt so much and why you can’t do the simplest things. They don’t understand how you can be so tired. They don’t understand how you were just fine two minutes ago and now you are not. They do not understand why peace, quiet, and no drama is important to your health.

2. You want to go but, you just don’t feel like being around certain people. People can work your last nerve. Especially, when the positively negative crew is on deck. I thought this was a party not Wrestle-mania . YOU LIED TO ME!!!! (dramatic scene)

3. They don’t believe you are ill. They will never tell you that outright (cowards!) but oh do they consistently imply. You know you don’t look sick.

4. I don’t feel comfortable. Sometimes, having all of these things interfere with your life on a daily basis gets to me. I long for myself and I have no idea who this “new” person is after 5 years going on 6 with RA and I am just not use to her. I am still trying to figure it out.

5. New people also think you are flaky. She said she was coming, she said maybe…she always says maybe. Hey look, give me a minute.

6. Patience. If we are going to deal with each other we need patience. Patience is something missing in most of us. I struggle with having patience with myself tremendously. I guess that is why I don’t bother when others don’t.

So, I navigate the waters of friendships and associations with a long rowing paddle. Plus, I am a Pisces who doesn’t let everyone in my castle. Sure we can play on the front lawn and the palace porch, but come in? I don’t know about that. Meet me in the courtyards. I have to trust you. I have to trust you won’t see me as I sometimes see myself. Weak and vulnerable to RA but, never weak and vulnerable. Yeah…double talk.

~Nikki

 

Sunday Morning Coffee Musing: Don’t Crowd Fund Your Self Esteem

FROM MY SPIRIT, Uncategorized
Cup of coffee and clementines
Cup of coffee and clementines. Photo by Natalia van Doninck on Getty Images

It’s not possible you would know everyone who walks along a crowded street or those standing with you at a concert. Crowd funding consists of strangers and a few people you know contributing to your cause or project. It’s not likely those people know you from the eyes of a good friend or the perspective of a wonderful family member. So, in this life why do we seem to crowd fund our self-esteem? I know I am guilty of this from time to time but, oh I remember the days where I relied heavily on the opinions of others and even sought-after validation. Thank God! Thank God because I did the hard work and made it through the mistakes to get to this point to talk to you, unashamed, about crowd funding your self-esteem.

What people don’t understand about those who struggle with self-esteem issues is it didn’t start yesterday. They also don’t understand the complex journey it takes to go back in your life and discover where the seeds were planted and the hard work it takes to cut the roots of low self-esteem. Crowd funding your self-esteem is when you rely on the contributions of others’ opinions to fund how you feel about yourself. You should cancel this fund raiser (thought) each time it pops in your mind. I could go through a bunch of steps on how to do this but there is this one saying that sums it up and you could tape it to your forehead or mirror. Whichever is more fashionable for you!

The quote is: Comparison is the thief of joy-Theodore Roosevelt

Why are you sad now? Why are you feeling defeated now? Why are you feeling bad about yourself now? You just compared your progress, success, where you are, to someone else’s progress, success, how farther they are in life than you are and now your joy has been stolen by comparison. Stop that. Learn to admire others and set your OWN goals. If June buys a million-dollar home don’t try to buy a million-dollar home simply to measure your success by June’s. Look at your bank account, do the math, and buy what you can afford. If Courtney just ran her first marathon and you just made it running a mile, how UNFAIR is that to compare yourself? Your diligence and her diligence are simply diligence. I tell you “a truth” as Jesus said in the Bible when he was about to introduce a new concept: If you learn to CELEBRATE YOUR VICTORIES AS WELL AS OTHERS you wouldn’t need to crowd fund your self-esteem.

Don’t compare yourself with others. Instead, celebrate yourself and others.

~Nikki

Pain and Potato Chips

RAFibroOAEtc., Uncategorized

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If you suffer from chronic pain such as fibromyalgia, rheumatoid arthritis, lupus or any of the likes you know what it’s like to be in some sort of constant discomfort whether it’s on a scale of 10 during flares or that annoying low grade pain that eventually wears you down. Many of us have weight issues before we ever have the diagnosis or you gain as soon as you are put on the medication. It makes losing weight a challenge to say the least and then to add insult to injury the connection between pain and eating.

I understand emotional eating but, tack on a physical pain and you are certain to go off the radar into the black hole of weight gain. I find myself mindlessly snacking or over indulging during low to mid grade pain that is working my nerves literally and figurative. The stabbing pain of fibromyalgia and the joint pain of rheumatoid is taken down a notch by medication or pain meds but, many times it doesn’t go away. I rarely mindlessly snack or overindulge during big flares. I can’t. But maybe some of you do.

I have decided to make sure I prepare by purchasing some healthy snack alternatives to have on hand so I can get some nutritional value during those times. I also will try to turn my attention to something other than the TV because that can lead to more snacking. Share your tips and ideas if you don’t mind or maybe some of your favorite healthy but tasty snacks or some of your hobbies to get your mind off your pain and food. Perhaps we can help each other out. Many times when you have pain you don’t want to do anything too strenuous but snacking all day and overindulging is not helping us at all.

~Nikki

Kanye-ing Anxiety

FROM MY SPIRIT, Uncategorized

 

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There are  times in life when we will face some really difficult situations which can cause us to “worry” or to become “concerned” about the outcome. Anxiety is a perpetual worry and concern. It can come like a flood seemingly out of nowhere or it can come immediately when something foreseen or not begins to manifest right before our eyes. And many times  it may never manifest or at least not to the full degree we allow ourselves to imagine. It is when our active imagination takes us out in the deep where we lose sight of the shore of hope and faith. We are no longer anchored to the shore. We are floating out on a sea of shaky thoughts. We become “see” sick by the things we imagine will happen.

I ran across this quote and I had this thought: “Oh, it’s like Kanye-ing thoughts which create anxiety.” Imagine anxiety with a mic and you run up on stage and say “Look, I’m not going to give the mic back. However, I would like to thank the Creator for all that I have. I am grateful for life. I am thankful for the breath I breathe. I am thankful for the clothes and shoes I have. I am happy I can see, walk, talk and taste the food I have. I am so very grateful for the lessons I am learning….”  You know blah blah blah good stuff until Anxiety walks off the stage and has a seat.

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In many cases it’s rude to interrupt but, it’s perfectly fine to interrupt negative thoughts and “what ifs” that create and build up negative emotions that send you into anxiety rap battles also know as anxiety attacks. I remember reading a book by Inyanla Vanzant that stated “If you are going to play the “what if” game, play the other side.” In other words, what about “what if” it doesn’t happen? Instead, use your imagination to create solutions and calm. Also, if you play the what if game, then ask yourself what can I do if that does happen. I know it’s not easy. I know from experience. However, it’s worth cutting off negative thoughts or anxiety and filling your mind with gratitude instead.

~Nikki

The Mental Whip of Fibromyalgia

RAFibroOAEtc., Uncategorized

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As I type this there is a shooting pain in my fingers. It was pain in my face and well as you may know, fibromyalgia pain can move around your body fast and sharp like lightening. I have swelling and I am tired. I don’t want to talk. However, it’s not easy to do when you have to be a parent and you must put on your parent face. Even if that face feels like it’s being electrocuted.

I am not surprised there is a link to chronic pain/illnesses and depression. The way the two chronic pain twins I have, Rheumatoid Arthritis and Fibromyalgia wrecks havoc on my body, I can tell you it can be more than a battle. It can be a war.

Today I have experienced little sharp pains on and off. I did not rest well last night because of carpal tunnel in both of my hands and forearms. So, I am very tired. Later, this evening the sharp pains began to move around and intensify. Again, on and off. Add stress from an event today and my mind is on a roller coaster of I can handle it on the way up and I can’t take this @#$%! on the way down. I’m angry. I ‘m sad. I am hurting. My skin feels like something is crawling on it and it’s itchy at times. This is so annoying and it drives you nuts.

The mental whip of chronic pain is one with sharp objects attached to it. It rips away at your soul as it pulls out and damages your psyche as it comes back in for more. The thoughts to stay strong, when you really want to crash and burn, and sometimes, many times you do, is war. Your body and your mind, and your spirit is taking a beating.

I will pray for us tonight.

~Nikki

 

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Rise Up Again

FROM MY SPIRIT, Uncategorized

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You have the courage and the strength to rise up again. Again means you have done it before and  if you have done it before you can do it again. I know. it’s never been this devastating. I know, it’s never been this dark. I know it’s never been this hard. Still, you have it in you to rise once more and again if you have to. And when you rise, pray.

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And when you rise up, TAKE courage. Sometimes you have to TAKE courage and do what needs to be done.

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Rise up.

~Nikki

 

 

Cooking w/Chronic Illnesses? Yeah. Right.

RAFibroOAEtc., Uncategorized

 

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Some of us loved to cook before Chronic Illnesses invaded our lives. Before fatigue, pain, damaged nerves, etc we didn’t mind getting in the kitchen and whipping up a feast or our favorite meals. In many forums I’ve seen some give up by force and some by choice. And that’s okay. Then there are those like me, stubborn and not willing to give up completely. I’ll go down in this ship and they will have to pry that spatula from my rheumatoid arthritic hand.

I’ve been known to be a bit hard headed. I’ve been known to spontaneously decide to do zumba when I’m not suppose to because it’s high impact and then pay the cost later. Usually, friends asking, was it worth the pain? Was it worth the flare? The correct answer is no. But I do feel some sort of satisfaction for doing something RA/RD took away from me. I’m sure I’ll stop that madness soon… Especially after that recent big flare and fatigue.

But cooking, especially when you have a family is not so easy to give up. Plus, I don’t have the money for a personal chef and my daughter is just now old enough to be trusted in the kitchen (thank God). However, when she wasn’t I had to cook. But I’m teaching her and it’s helping out more and more. I’ve scheduled her days and my days. I love cooking and having family/friends over and while I won’t give it up, I must make the necessary adjustments and take calculated risks at best. I really can’t do big feasts and extravagant meals like I did in the past but I can find new ways and new meals. I can adapt old recipes and plan meals out. I can. I will. Until I can’t.

Today, I’ll share a tool I love. The wok. Stir fry. Quick. Easy. And if you are worried about chopping vegetables don’t. Buy them at your local grocery in the frozen section. Also, I learned with Rheumatoid in my hands not to use so much force in stirring and to keep the wrist straight, using swift gentle motions. I’ve even used the wok with my compression gloves on. Also, investing in a chopper or processer is the best thing you can do.

Speaking of chopping and slicing vegetables, it’s difficult to slice and chop hard, thick, dense vegetables such as potatoes. Get someone else to do it if you can. Get a slicer. I didn’t mind slicing and dicing before. You know, it’s the touching and creating, the work of the art of cooking. I do sometimes still cut, slice, chop, easy vegetables like: Squash, zucchini, bell pepper, etc. I like fresh vegetables. On a good hand day I’ll cut and freeze them for later. Many times with help from my daughter.

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I hope to bring you more of my mishaps and lessons, simple recipes and meals.

~ Nikki

Champion Your Thoughts

FROM MY SPIRIT, Uncategorized

 

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Muhammad Ali was a champion in many ways but, what made him a champion in those ways was his ability to champion his thoughts.

As I reflect on my life I look at the ways I use self defeating thoughts verses champion thoughts. Many of us have been preprogrammed with thoughts or conditioned to think certain thoughts through experiences. Either good or negative, we think. If I’m to be honest, my thought process didn’t begin to change until I was 30 (however, I woke up so to speak at 26)  and here we have it 11 years later, finally taking root and blooming.

Champion thoughts requires hard, grueling, relentless and challenging work. Long hours at the spiritual gym within and a spiritual diet fit for a champion. You can’t eat (listen to, digest) anything that’s put on your plate. You will suffer some defeats, barely make rounds, but you will begin to win more than you lose when you learn to never change your champion mentality. But, you need only to adjust your approach, strategy, study your opposition and hit the spiritual gym more. Reflect.

A champion doesn’t become a champion by building the body only. Many men have lost relying on brute force alone. Many have lost the fight in this life with brute force alone. Champion thoughts help you get through the toughest times in your life. I look at Muhammad Ali and even though his body was attacked by Parkinson’s and  it silenced him physically, HE WAS STILL SEEN AS THE CHAMP. Champion thoughts  have no need be verbalized all the time. Champion thoughts don’t care about your pain, wins, losses or draw.  Champion have a need to be lived. May we live out our lives from here on out with champion thoughts. May we not see the world as we have in our twenties but, as the champions we are. Are you not still standing? Raise your arms up high, fist to the sky, Champion.

~Nikki