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

 

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

 

RA:What Happened in Vegas Came Home

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It was a warm and sunny Vegas evening, the evening of our last Vegas night. My family was going to walk to TGIFriday’s on the strip and I decided to go but, my feet were incredibly sore and swollen. I pressed on then opted to go back to the hotel room to rest for one last all nighter. I took a hot shower and propped my feet up in the bed. Maybe an hour after watching TV, I threw the covers off and to my shock my the swelling had moved up to my knees!

Emergency Room. Wheel chairs in the airport. I did get bumped up to first class! Landed in Memphis and straight to the hospital per Vegas ER doctor.

A year and a half of hell, hell was diagnosed as Rheumatoid Arthritis. When I got the diagnosis, it all came back to me…the swelling of my right foot, months before Vegas I woke up in excruciating pain. All of my bones were hurting and it seemed like my body was on fire. I went to a clinic and the doctor gave me a steroid shot. I was fine until Vegas. I was misdiagnosed and I had a young doctor who thought she knew everything. Very arrogant. I had no insurance at the time and was at a church health center. I insisted on another blood test and another specialists…after we had a few words. I’d had enough of her God complex. When the blood test went to the RA specialist and the RA doc finished the test, she was able to tell me I had RA and later fibromyalgia. She said my blood work was so close to lupus but given my past history of Juvenile Arthritis (in the 4th grade until the 8th grade then it “went away” but I found it went into remission and viola! you have RA), she determined it to be RA.

This was my start…

~Nikki

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#rablogweek

 

 

Sunday Morning Coffee Musing:God & Anxiety

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I didn’t see in the Bible where worry, anxiety, having cares is listed as a sin. I don’t know if in your religion, if it differs from mines, if it is listed as a sin or not. I do know in most Christian cultures, or so I have heard it preached it is a sin to worry. You know “You are doubting God if you worry because you don’t believe he can do xyz or you don’t trust god enough this is why it’s a sin to worry.” So on top of your worry/anxiety/depression you are now doubting God and you have trust issues. Great. That helps. However, I don’t see it or it doesn’t read to me as a sin but, it does register to me as not a good thing.

This morning I didn’t go to church as last night I began to feel anxious about going to church. I have not quite figured out where the root of those thoughts or even began to process those thoughts. This morning I simply asked God a loaded question/statement, an offering of thoughts so to speak: “Is being anxious a sin? If so, I certainly don’t see scripture list it as a sin and what about those who suffer from anxiety? I do see plenty of scripture on how to deal with anxiety. I see some don’t worry and don’t be anxious is that a command or is that comfort? Even when I see “be anxious for nothing” or “do not worry” it still doesn’t say it’s a sin. Because in the mind of an anxious person they have to feel more guilt about now sinning. Has the church ever thought about that? I guess not because many don’t acknowledge anxiety or depression as a real illness. Everything not understood or involving science can possibly be evil.” Whew.

Did I get an answer? Yes. It is not a sin to worry. It is not a sin to be anxious. It is not a sin to be depressed. BUT, it is not good because it can lead to what one may call sin but not only that, it can lead to bigger issues: mentally, emotionally, physically, even death i.e heart attacks and strokes, cancers and illnesses/dis-eases.  It can affect friendships and relationships. It can affect your job and hinder your progress. Impede your destiny. Even parenting! Etc. (yes, I believe the mind is connected to emotions, connected to the body).

Gee whiz God! I am just glad it’s not a sin so I don’t have to feel guilty. That is enough right there to set some free and allow them to get help. I was recently told by my doctor it seems as if I am experiencing some anxiety, possibly anxiety and panic attacks. I had no idea what was going on. So I am new to it all and as always I am a seeker of knowledge to gain an understanding.

There wouldn’t be so many scriptures combating worry/anxiety or depression if God didn’t know we were all different and some of us would experience these things in life. I also said to God this morning “How can I cast my cares if I don’t know what my cares are?” You see, anxiety or depression may not always have a source at the moment. It may not always have a reason you can put your finger on right away. God’s answer to me was “You don’t need to know because I already know.” And that, eased my mind.

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This is my blog. These are my thoughts. You have a blog. You express your thoughts. Thank You. Love you.

~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

Kanye-ing Anxiety

 

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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

Rise Up Again

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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