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

 

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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

Sunday Morning Coffee Musing: RA Blog: An Extraordinary Life

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I have a word of encouragement to all, but especially for those who have  rheumatoid arthritisfibromyalgia, lupus or any other illness or chronic pain. You can still live an extraordinary life and you can still leave an extraordinary legacy. Now, how you do that is totally up to you, but I urge you to ask your Source. Whether you are waiting on healing or whether you have accepted this assignment, I don’t know. But in the meantime you must reach beyond your pain and into your heart. And let me point this out to you; the extraordinary is not so much found in what we think we are, material things or grand adventures, who we were before this illness/dis-ease, we were extraordinary then and we are NOW. The extraordinary can be found in everyday things and people that surround us. And most of all within! Maybe you have recently found out you have one of these illnesses or dis-eases and you are devastated. You are trying to find your bearings. Don’t worry you will. I’m speaking from experience and when you do, when you come up with your new game plan, with your new approach to life, I will still urge you to live this life with extraordinary #action #thoughts #compassion #love#truth #wisdom #courage #boldness and #passion. Life itself is #extraordinary all on it’s own. And the truth is while these things physically attempts to wreak havoc on our bodies (succeeding or not) and life, here is something to remember…the real battle is either won or loss in the mind.
nikkisconfettilife.com

~Nikki

RA Blog: The “Eyes” Have It

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I woke up Saturday morning and noticed my right eye was a little red. When I returned home later on that evening both eyes were turning red, began to itch and I had pain behind both of them. Like RA in it’s grand fashion…it all happened suddenly. I have had itchy eyes before, swollen eyes, and this. I knew what it was.

It rarely happens to me, but for some it happens more often. I thought I would leave a link to an article that discusses all of problems that can occur with your eyes involving Rheumatoid Arthritis. Please take a moment a read it.

What did I do for my eyes? A cold towel, eye drops, and a naproxen for pain. They were better yesterday and today they are irritated this morning. I will have to give my doctor a call if they do not clear. I have never gone longer than 3 days.

http://www.everydayhealth.com/rheumatoid-arthritis/living-with/rheumatoid-arthritis-eye-complications/

~Nikki

 

RA BLOG: Winterizing Rheumatoid Arthritis

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It’s the most wonderful time of the year alright! But, tell that to Rheumatoid Arthritis! For many of us the cold weather causes our pain to increase and our activities to decrease. I don’t know about you, but my pain also increases over in the night when temperatures are dropping. It took me a few years to realize preparation makes things smoother even when your RA is unpredictable. We winterize our homes and I said to myself “Self, what about winterizing RA? Share what works for you and ask others to share what works for them!” So, here is my list of things that work for me. Please feel free to share yours.

  1. Clean your gutters-Clean your nightstand…and keep cleaning it! As soon as I clean my nightstand and it’s picture perfect, I blink and it’s cluttered again. In the middle of the night who has time to fumble around and knock over the water bottle. Which takes everything else along with it as you search for the lamp. (Do purchase a cheap lamp for your nightstand. Bright light in the middle of the night makes harder for you to get back to sleep).
  2. Get a container from the dollar store. Place your water bottle, pain medication, fuzzy socks, compression gloves, etc in it. Everything you think you will need at night. I have a fashionable pill box in for my purse. I find that if I take it out at night I forget to put it back in or if I put it back, now a pain pill is missing if I need it when I am out. So, I have a pill box (or get a ziploc bag) with about 5 pain pills in it and toss it in the bucket. Everything I need is in that container for the night. The good thing about he bucket/container you can take it with you to the family room!
  3. Reverse your ceiling fans! It helps circulate the heat in the room.
  4. How many times have I forgotten my gloves? I can’t keep count. So I keep an extra pair of gloves in the glove compartment.
  5. Get some winter boots with a good treading for snowy days. We really don’t need a fall! Our gait can be a bit “wobbly” at times.
  6. Blankets are our friends. A blanket in the room where you watch TV or an extra blanket or quilt across your bed comes in handy.
  7. Exercise. You may not can walk in the cold and well, there goes your exercising routine. However, marching in place during commercials or doing some for of exercises indoors will keep your joints from getting stiff. My fibromyalgia seems tightening my muscles more in cold weather. So I do much more stretching via yoga. I love yoga.
  8. Open the curtains and blinds. A dark home can be a bit depressing and when things are not going well for us, pain and etc., a lighten mood is welcomed. Especially, by our loved ones who live with us! No bah humbugs here.
  9. More pain equals less cooking. If you can, when you are feeling well or have help, cook in batches and have a plan. Soups, chilis, casseroles all make cooking less of a task in the long run. Also, a few frozen dinners never hurt anyone.
  10. Breathe. Meditate. Grab a good book. Tell winter how much you love it and you are glad you are here to see it. Don’t let RA make you “hate winter” or the holidays. Think on the things you still love about winter. I love the cozy feeling. I like the fireplace going or all of the different chilis you can save on Pinterests that you never make! LOL

~Nikki

If you have any tips please share!

Before You Get to the Edge. RA BLOG

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What do you need to do as a person with a chronic illness or dis-ease before you get to the the edge? The breaking point? The split second before bad attitudes, mean words, a frown forms across your brow, and just plain funk kicks in making your home or work atmosphere an unpleasant place. Before you have to “back track” and make apologies, amendments, and atonements, here are two question that may help you. But first, let me explain how this came to me this morning.

After my second night of restless sleep, I laid there pushing myself to get up or my daughter would be late for school. I slept with the breathing machine on (CPAP machine) and it was annoying all night. Tossing and turning with the “so and so” cord tangling around my arm and head. The wisp mask, even with the soft, light rubber around it, was hurting my face because fibromyalgia was awake, too. When I finally snatched it off this morning, I was tired before I got up.

When we have restless or painful nights it can make us feel defeated before we even roll out of bed. Defeated, before we get our day started. It can make us pessimistic, angry, moody, and we can began to bark out in frustrations to family, friends, significant others, children, and coworkers. I sat up on the side of the bed and thought to myself “I feel horrible. I wish I could get more sleep. Oh well.” To the bathroom, get dressed and I sat on the side of the bed putting my shoes on and I realized I was frowning. I felt heavy as I moved around. And then I asked myself a question that I already knew the answer to:

WHAT’S WRONG? WHY ARE YOU IN A BAD MOOD ALREADY? (your answer may vary but give yourself the full blown answer. Not the short answer)

Answer: I did not sleep well. I am upset that I cannot go back to sleep. I do not feel like being upbeat and chipper. But, I have to send my daughter off to school in the best mood possible.

WHAT DO YOU NEED TODAY? WHAT DO YOU NEED TO MAKE IT THROUGH THE DAY AND IMPROVE YOUR MOOD? (Your answer may vary drastically depending on the situation and day. You could be working, a full time at home parent, work for yourself, etc)

I need sleep! But I can’t go back so I need peace and quiet. I need the least amount of conflict and chaos. I can limit phone calls to and from people that are prone to give me bad news or talk too long, news and social media. I can eat a good breakfast. I can sit outside this morning for 30 minutes. Sunshine improves my mood. I can tell my daughter the truth.

Yes. Tell the people in your life the truth.

Me to my daughter: “Morning. Not to chipper or talkative this morning. Sorry. Rough night.”

Her: “Oh. It’s okay Mom.”

So before you get to the edge…

WHAT’S WRONG? – TELL YOURSELF THE FULL VERSION

WHAT DO I NEED TO DO FOR MYSELF TODAY THAT WILL MAKE THIS BETTER//GET THROUGH THE DAY?- NAME IT. LIST IT. DO IT.

AND BONUS: TELL PEOPLE IN YOUR LIFE THE TRUTH ABOUT HOW YOU FEEL WHEN IT’S REALLY BAD OR IF YOU’RE  JUST NOT UP TO PAR THAT DAY. I know we are always feeling bad most of the time and we don’t have to let people know that. However, when it’s one of those days when you wake up and can feel the ANGST check it (address it) before you walk out the door of your room.

~Nikki