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

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

 

 

 

If You Must. RA Blog

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The last two years for me have been very difficult times. I have been fighting for disability. I have not worked because I cannot hold down a fulltime job and all savings have been depleted. I had a new diagnosis in 2015 of osteoarthritis in my right toe (I had surgery for halludux rigidus) and this year I saw a report from one of my doctor which stated osteoarthritis in both knees (and decrepitus). Every time I go to the doctor or have tests I have anxiety attacks. I was tested so much this year for breathing problems ffinallyit was diagnosed as sleep apnea and dyspnea. I went to the doctor last week and I was told I need medication for diabetes. Also, a few months ago, after being tested numerous times, I now have peripheral neuropathy in my lower limbs and carpal tunnel syndrome in both hands and upper limbs. Bouts of depression are often.

I have had plenty of reason to look back woefully, angrily, and puzzled. Recently, in gathering medical records, my pediatric doctor office was able to find my diagnosis of Juvenile Rheumatoid   Arthritis. I thought I had it since I was 12, but the symptoms began at 8 and diagnosis was at 9. I read the letters and I noticed how kind, compassionate, and thorough the specialist who informed  my doctor of the findings as they communicated back and forth. In reading those forms I cried because I began to remember vividly those painful and uncertain days. It also gave me a clue as to my left eye having blurring problems I had forgotten it started when I was a child. It is so intermittent and this year an ophthalmologist saw the problem. The one sentence the pediatric rheumatologist stated was for girls, at such a young age, rheumatoid arthritis has a “smoldering effect.” Yes. How right he was.

How can I look back, if I must, forgivingly? I’m not sure exactly what top forgive. In looking back then and now, longing for when I was okay. The window where I felt no pain. The time when I knew exactly where I wanted to go and all I wanted to do. The place where I was so optimistic About going in my life and that “here,” whereII am now, is a place I never saw because I never envisioned it. And I am not talking just for the diagnosis of RA and the other laundry list, but life overall. As my therapist said last week, break it down, piece by piece, to not get overwhelmed. I guess I forgive it piece by piece and understanding I had no control at that young age over a disease and I don’t have much control over it now. I do have control over how  deal with it and which direction to go forward. Looking forward prayerfully…no problem. I have no choice as far as I am concerned to constantly pray about my future. I try my best to be in the NOW and remain grateful. Though it is very, very hard at times.

~Nikki

Unsteady: Depression and Anxiety

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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

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

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!!!!”

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

 

Biologics: Feeling Some Type of Way

How perfect is this prompt of Biologics and how I feel about them since I started my first injection this Monday? When I read about biologics and TNF I was like whoa! Much like the gif you see above!

I was on methotrexate and when I got a new Rheumatologist, he immediately took me off of methotrexate and the daily dose of Naproxen. He said I’d been on it way too long! I wasn’t getting any benefit from it but, I thought heck, I “guess” it’s working in comparison when I first was diagnosed. So we moved on to Arava. It worked very well. I didn’t have morning stiffness but, it still took me forever to get it together in the mornings and in my Prince voice, rest his soul, “Forever is a mighty long time.”-Go Crazy.

This year, I began to have numbness and tingling in my hands, arms, legs so severe it would wake me up in pain. After, many tests, I have a bad case of carpel tunnel and I have some nerve damage in my legs. My RA doc took me off Arava saying it might be the cause. The Neurologists bumped up my Gabbapentin. The RA doc said we have tried everything let’s move to an injection. My heart dropped.

I don’t want to stick myself was my first thought. Secondly, I don’t know about fake things hooking up with my real things in my body. I understand that the pills I swallow are man made, but eh…biologics is an even greater gamble of infections and I am already at risk for infections. There is no proof it works any better but, I have seen raving reviews of Embrel and I have seen blank stares as if, it didn’t do much.

I gave myself my first injection Monday. I haven’t had any immediate side effects. I have not had any immediate relief as I am in a flare of two days now. So, I don’t know how I feel about Biologics. Sometimes, with RA and Fibro…I just get tired of feeling, thinking, and worrying so much.

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~Nikki

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

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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. Which ever 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 is 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

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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