Fibromyalgia Awareness Day

Tomorrow, May 12th, is 2013 Fibromyalgia Awareness Day so I thought I’d simply share my previous post about this.

Understanding of fibromyalgia as a real chronic illness is recognized on this day each year with events held across the U.S. and around the world to raise awareness about fibromyalgia and its impact on individuals, families and communities.

The National Fibromyalgia & Chronic Pain Association (NFMCPA) stands ready to help you and/or your support group create a memorable event to make a difference in your community.

The theme this year is “CARE & Make Fibromyalgia Visible.”  The acronym CARE stands for:

C – Contribute
A – Advocate
R – Research
E – Educate

The goal of this year’s campaign is to engage people outside of the fibromyalgia community to support and spread awareness for FM recognition to the general public.

To help you spread the word, the NFMCPA is providing FREE Fibromyalgia Awareness Day Event Kits for events of all sizes.  Whether you’re one individual person who wants to get a proclamation signed by your legislators or a large group sponsoring a city-wide walk, they have the materials you will need, including posters, signs, instructions, step-by-step checklists and even raffle tickets and receipts.

Awareness Day and Fundraiser Event Kits available include:

• Community Picnic Events
• Table-Top Exhibits for Shopping Malls, Health Fairs, Farmers’ Markets, etc.
• Walk to Cure FM Events
• State Legislature Visits – Proclamation and Resolution Program

For more information or to order an event kit, visit the NFMCPA’s Awareness Day 2013 Web page.

[Shared from http://www.prohealth.com]

…

To read more about how fibromyalgia affects lives, please check out the Fibromyalgia Awareness Day tab on my Chronic Illness page.

…

Related articles

• Fibromyalgia Awareness Day is Sunday May 12, 2013! (joaynn510.wordpress.com)

Carry Me

I am so thankful for the way God has carried me through some tough days over the past couple of weeks. Thank you to the many people who prayed for me. I definitely felt uplifted!

Today I am doubly thankful because my friend Patricia Knight has graciously allowed me to share another of her great devotionals with you. And I don’t think the subject of this devotional is a mere coincidence—more like what Pat and I call a “God-incidence.” Pat, I thank you, my dear, dear friend!

…

By Patricia Knight

 Is there any place a child would rather be than hoisted up onto his father’s broad shoulders, with legs wrapped securely around his dad’s chest, held in his firm grasp?  What a view from the child’s loving perch at the top of his world!  The boy’s little hands run playfully through his dad’s hair until his father suddenly lunges forward, pretending to stumble.  Suddenly the child reaches out in desperation as his once relaxed body contracts in fear.  When his jerking hands instinctively reach to grasp something safe, he lands a choke hold on his father’s neck.  Then his dad laughs uproariously, vowing to play no more tricks.  The child relaxes once more in the shelter of his father’s love and protection.  The playful ride continues until the father is happily exhausted.

Being lifted up and revered is not just child’s play.  We all crave protection and the ability to view the world buoyed by the safety of our heavenly Father’s shoulders.  “Let the beloved of the Lord rest secure in Him, for He shields him all day long, and the one the Lord loves rests between His shoulders” (Deut. 33:12).

Our heavenly Father never stumbles nor will He ever carry us into dangerous territory.  When times in our life are tough, God often carries us on His shoulders, the safest place in the world to be.  Who among us doesn’t long for absolute security and safety?  Moses reminded God’s people, “The Lord your God carried you as a father carries His son” (Deut 1:31).

Our ride of assurance by God is not a one-time, fun-time. “I’ve been carrying you on my back from the day you were born, and I’ll keep on carrying you when you’re old.  I’ll be there bearing you when you’re old and gray.  I’ve done it and will keep on doing it, carrying you on my back, saving you” (Is 46:4, The Message).

Remember, when we attempt to navigate the seemingly insurmountable trappings of life, we are not alone.  God, who created us, will sustain us.  Relax your tight muscles of fear.  Enjoy the promise of your Lord’s vast resources of peace and safety, love and kindness, faithfulness and forgiveness.

God’s shoulders are massive, supporting us when we are burdened with a load of care.  He delights in His children, desiring to lavish all of us with His love and grace.  Let us rejoice in the abundant encouragement God offers.  Only then can we enjoy the ride through life, held securely on His shoulders.

…

…

Everything I Need
by Kutless

When every step is so hard to take
And all of my hope is fading away
When life is a mountain that I can not climb
You carry me, Jesus carry me.

You Are strength in my weakness
You are the refuge I seek
You are everything in my time of need
You are everything, You are everything I need

When every moment is more than I can take
And all of my strength is slipping away
When every breath gets harder me
You carry me, Jesus carry me.

You Are strength in my weakness
You are the refuge I seek
You are everything in my time of need
You are everything, You are everything I need

I need You
You are everything I need
I love everything about You

You Are strength in my weakness
You are the refuge I seek
You are everything in my time of need
You are everything, You are everything I need

…

I hope you feel as encouraged as I did when reading this. Like so many of us, Pat is very familiar with chronic daily pain but she doesn’t let it get her down. She knows she can count on Him to carry her on His shoulders when she needs Him the most.

How about you, Beloved? You can call on God ANYTIME to carry you through a tough time!

2013 Fibromyalgia Awareness Day

May 12—Fibromyalgia Awareness Day—is just around the corner and events will be held across the U.S. and around the world to raise awareness about fibromyalgia and its impact on individuals, families and communities.

The National Fibromyalgia & Chronic Pain Association (NFMCPA) stands ready to help you and/or your support group create a memorable event to make a difference in your community.

The theme this year is “CARE & Make Fibromyalgia Visible.”  The acronym CARE stands for:

C – Contribute
A – Advocate
R – Research
E – Educate

The goal of this year’s campaign is to engage people outside of the fibromyalgia community to support and spread awareness for FM recognition to the general public.

To help you spread the word, the NFMCPA is providing FREE Fibromyalgia Awareness Day Event Kits for events of all sizes.  Whether you’re one individual person who wants to get a proclamation signed by your legislators or a large group sponsoring a city-wide walk, they have the materials you will need, including posters, signs, instructions, step-by-step checklists and even raffle tickets and receipts.

Awareness Day and Fundraiser Event Kits available include:

• Community Picnic Events
• Table-Top Exhibits for Shopping Malls, Health Fairs, Farmers’ Markets, etc.
• Walk to Cure FM Events
• State Legislature Visits – Proclamation and Resolution Program

For more information or to order an event kit, visit the NFMCPA’s Awareness Day 2013 Web page.

[Shared from http://www.prohealth.com]

…

To read more about how fibromyalgia affects lives, please check out the Fibromyalgia Awareness Day tab on my Chronic Illness page.

Oh, the pain…

This Mishmash Monday is brought to you by the pain I live with every day. There are several things I’m going through this week that will make it difficult for me to work on my blog regularly for the next couple of weeks, so I’m scheduling several inspirational image posts to remind you how much you are loved by Jesus Christ, the One who loves us so much He died for our sins.

Even though I endure pain on a daily basis, I always look to my Savior and Lord, Jesus Christ, for “the peace that passes all understanding” (Philippians 4:7). And I absolutely “consider it all joy…when [I] encounter various trials” (James 1:2).

How is this even possible? Because I know where my true joy lies: in the knowledge that one day I will no longer be in any kind of pain as I enjoy life in my new heavenly home.

So, here’s my mishmash of images that describe (in a way) how I feel on any given day.

My term for de-conditioning is “payback”

…

…

…

This is how I should look because of how I normally feel

…

Migraine head

…

…

…

If you have trouble viewing the Casting Crowns video above, here are the lyrics to the song, “Praise You in This Storm”:

…
I was sure by now
God You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say “Amen”, and it’s still raining

As the thunder rolls
I barely hear Your whisper through the rain
“I’m with you”
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away

[Chorus:]
And I’ll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
And every tear I’ve cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm

I remember when
I stumbled in the wind
You heard my cry to you
And you raised me up again
My strength is almost gone
How can I carry on
If I can’t find You

But as the thunder rolls
I barely hear You whisper through the rain
“I’m with you”
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away

[Chorus]

I lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord
The Maker of Heaven and Earth

…

Enough

I know many people pray for a word from the Lord for each new year. I have never thought to do that but this year God apparently has other plans for me. During the last couple of months of 2012, He kept placing the word enough in front of me in various ways. Sometimes it was in my Bible reading, other times in a devotional I was reading. And other times it was something in the news or online.

I’m not sure how I’m supposed to use that word this year or how God wants me to write about it. But I do know that it is to have significance for me this year, and I am to share what I learn with you. I don’t know if I’ll be writing about this subject every week or every month, but please know that I will be in prayer about how and how often to share what God gives me.

For now, let me start with a story that maybe you’ve already read. It has been taken out of context a lot but here it is with the proper acknowledgement to the original author. I’ll let the story do the telling.

“I wish you enough!”©

By Bob Perks

I never really thought that I’d spend as much time in airports as I do. I don’t know why. I always wanted to be famous and that would mean lots of travel. But I’m not famous, yet I do see more than my share of airports.

I love them and I hate them. I love them because of the people I get to watch. But they are also the same reason why I hate airports. It all comes down to “hello” and “goodbye.”I must have mentioned this a few times while writing my stories for you.

I have great difficulties with saying goodbye. Even as I write this I am experiencing that pounding sensation in my heart. If I am watching such a scene in a movie I am affected so much that I need to sit up and take a few deep breaths. So when faced with a challenge in my life I have been known to go to our local airport and watch people say goodbye. I figure nothing that is happening to me at the time could be as bad as having to say goodbye.

Watching people cling to each other, crying, and holding each other in that last embrace makes me appreciate what I have even more. Seeing them finally pull apart, extending their arms until the tips of their fingers are the last to let go, is an image that stays forefront in my mind throughout the day.

On one of my recent business trips, when I arrived at the counter to check in, the woman said, “How are you today?” I replied, “I am missing my wife already and I haven’t even said goodbye.”

She then looked at my ticket and began to ask, “How long will you…Oh, my God. You will only be gone three days!” We all laughed. My problem was I still had to say goodbye.

But I learn from goodbye moments, too.

Recently I overheard a father and daughter in their last moments together. They had announced her departure and standing near the security gate, they hugged and he said, “I love you. I wish you enough.” She in turn said, “Daddy, our life together has been more than enough. Your love is all I ever needed. I wish you enough, too, Daddy.”

They kissed and she left. He walked over toward the window where I was seated. Standing there I could see he wanted and needed to cry. I tried not to intrude on his privacy, but he welcomed me in by asking, “Did you ever say goodbye to someone knowing it would be forever?”

“Yes, I have,” I replied. Saying that brought back memories I had of expressing my love and appreciation for all my Dad had done for me. Recognizing that his days were limited, I took the time to tell him face to face how much he meant to me.

So I knew what this man experiencing.

“Forgive me for asking, but why is this a forever goodbye?” I asked.

“I am old and she lives much too far away. I have challenges ahead and the reality is, the next trip back would be for my funeral,” he said.

“When you were saying goodbye I heard you say, “I wish you enough.” May I ask what that means?”

He began to smile. “That’s a wish that has been handed down from other generations. My parents used to say it to everyone.” He paused for a moment and looking up as if trying to remember it in detail, he smiled even more.”When we said ‘I wish you enough,’ we were wanting the other person to have a life filled with just enough good things to sustain them,” he continued and then turning toward me he shared the following as if he were reciting it from memory.

“I wish you enough sun to keep your attitude bright.
I wish you enough rain to appreciate the sun more.
I wish you enough happiness to keep your spirit alive.
I wish you enough pain so that the smallest joys in life appear much bigger.
I wish you enough gain to satisfy your wanting.
I wish you enough loss to appreciate all that you possess.
I wish enough “Hello’s” to get you through the final “Goodbye.”

He then began to sob and walked away.

My friends, I wish you enough! by Bob Perks

http://www.bobperks.com/wish.htm

Perfect Peace

I hope you enjoyed a wonderful and blessed Christmas. Ours was quiet and peaceful, something I sorely needed this year because of so many reasons. I didn’t want to leave you all just hanging but I need to take some time to myself this week.

I am in the beginning of trying a new medication that is making me feel horrible right now but apparently that is typical for this—to feel worse before you feel better. I am holding on to the hope that this one will work for me but the painful reality is trying to tell me otherwise as I wait.

Here’s a little something for you as we finish out 2012. I know it is more of a spring theme but Isaiah 26:3 is one of my life verses and the sight of all these gorgeous tulips make me feel peaceful.

…

Beloved, I pray for all of us to have this “perfect peace,” the kind that can be found in Jesus Christ alone.

To Those Hurting This Christmas

So many of us are hurting, mostly in ways not easily understood by our friends and family because we put on a good front. We don’t want to bother our loved ones with the details of how much pain we endure each day. Or we’re so busy caring for others in dire physical circumstances that we don’t have the time or inclination to think about how much we go through as we care for these dear ones. Perhaps we don’t know how we’ll pay the bills this month. When or how will we get our next paycheck—or meal?

Oh, we may have a deep and abiding faith in God because we know He loves us and cares about every single little detail of our lives…but these days we are clinging to that faith by our fingernails.

We are understandably so focused on our own pain and suffering or that of our loved ones that we’re afraid to confront our frustrations about a situation that never seems to end. How do we get through this Christmas season of joy when everything around us is in shambles?

Beloved, I’ll be writing more about this in the next days before Christmas, but today I want to share something with you that arrived in my inbox this morning. I pray you will be blessed by this as much as I am, and I will be praying for each and every hurting heart who reads this.

by John Knight | December 9, 2012

I know some of you are praying you’ll make it through Christmas—just make it through—not anticipating anything good will come from gathering with extended family and friends. It has become a cliche—right next to the article on what second-graders are excited about for Christmas is the article on the rise in depression during this last month of the year.

You know the sadness is real. While you change the diaper of a teenager, or administer complicated medications, or prevent your non-verbal ten-year-old from hurting himself again, or explain yet again the complicated life of your five-year-old without a diagnosis for her disability, your nieces and nephews and young friends are playing and running and eating, happily talking about the toys they want or travel they’re excited about or things they are doing in school. They easily do things your child will never do, no matter how many therapies or medications or prayers are offered.

Or maybe the disability in your family member means you can’t gather with other loved ones, and the heartache is almost more than you can stand.

Jesus knows.

For we do not have a high priest who is unable to sympathize with our weaknesses, but one who in every respect has been tempted as we are, yet without sin. (Hebrews 4:15, italics added)

More than that, he endured and is victorious!

Therefore, since we are surrounded by so great a cloud of witnesses, let us also lay aside every weight, and sin which clings so closely, and let us run with endurance the race that is set before us, looking to Jesus, the founder and perfecter of our faith, who for the joy that was set before him endured the cross, despising the shame, and is seated at the right hand of the throne of God. (Hebrews 12:1–2, italics added)

And there are some of you who can’t see it. There is still hope!

From Pastor John’s book, When I Don’t Desire God: How to Fight for Joy,

It is utterly crucial that in our darkness we affirm the wise, strong hand of God to hold us, even when we have no strength to hold him. This is the way Paul thought of his own strivings. He said, “Not that I have already obtained this or am already perfect, but I press on to make it my own, because Christ Jesus has made me his own” (Philippians 3:12). The key thing to see in this verse is that all Paul’s efforts to grasp the fullness of joy in Christ are secured by Christ’s grasp of him. Never forget that your security rests on Christ’s faithfulness first.

Our faith rises and falls. It has degrees. But our security does not rise and fall. It has no degrees. We must persevere in faith. That’s true. But there are times when our faith is the size of a mustard seed and barely visible. In fact, the darkest experience for the child of God is when his faith sinks out of his own sight. Not out of God’s sight, but his. Yes, it is possible to be so overwhelmed with darkness that you do not know if you are a Christian — and yet still be one. (216, italics added)

Jesus understands. Jesus is victorious. Jesus is the answer. May you find him, and in finding him, find hope and peace in these hard days.

And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus. (Philippians 4:7)

John Knight is Director of Development at Desiring God. He is married to Dianne and together they parent their four children: Paul, Hannah, Daniel, and Johnny. Paul lives with multiple disabilities including blindness, autism, cognitive impairments and a seizure disorder. John blogs on issues of disability, the Bible, and the church at The Works of God.

http://www.desiringgod.org/blog/posts/to-those-hurting-this-christmas

No Time to Rest

Today I’d like to talk about physical rest.

I used to be quite the multi-tasker, but then I believe most women are very good at doing more than one thing at a time. It’s the way we’re wired. If we’re not working on at least two things at once, our minds are whirling with thoughts and ideas for what needs doing next. Some nights all those jumbled thoughts keep us from getting to sleep.

Can I get a high five here? Oh, sorry. You probably don’t have a free hand what with having to juggle all those tasks.

I can still remember when I was able to do about five things at the same time and actually wonder what else I could accomplish?

That was then. Fast forward to my “new normal.”

About twelve years ago, after many lab tests and doctors’ visits, I was told that my daily severe all-over pain and mind-numbing fatigue were the result of Fibromyalgia (FMS) and Chronic Fatigue Syndrome (CFS). While I was somewhat relieved to have some kind of a name for what I was going through, my mind refused to believe it. I was only working part-time then—3 days a week for 4 hours a day—but it got to the point where I was spending all  my days off recuperating from working those 4 hours the day before. And I was still a newlywed whose husband was probably wondering what he had gotten into!

Even when I finally quit my job, my mind still refused to wrap itself around the fact that I needed to change my habits. I remember that I quit working around mid-November and then spent the next month sewing Christmas gifts for my friends and family for hours and hours each day. By Christmas I was beyond exhausted and starting to realize I needed to rethink some things.

Easier thought than done.

What is is about resting that many of us have trouble with? Is it because we have never really learned how to rest? Could it be that we need to fill every minute with something because it keeps us from thinking too much? Or maybe we believe we’re worth more if we’re producing some kind of work all the time?

Chalk up that last one for me.

Except for a few years when my children were very young and a sabbatical in 1996, I had worked my whole adult life. When I was forced to stop working in 2000, I felt… worthless. I had always seen myself as proficient, reliable, hard-working—you know, a “can-do” kind of person. Someone everyone could always count on.

And that’s exactly when the Lord showed me that instead of relying on Him, I was relying on my own strength. And guess what? That strength was gone.

Beloved, maybe you see yourself in one or more of these scenarios. It’s okay. You can admit it.

Even though I was in denial for many years about this, I finally get it.  Where before I could easily clean my entire house in a couple of hours, these days my house is never completely clean because I can only do one thing at a time and then I need to rest. I’m talking about sweeping the floor one day and wet mopping it the next (or the next) day, depending on how I’m feeling. Some days the only thing I can accomplish is nuking something for dinner.

And that’s okay!

My hubby is fond of quoting a line from a M*A*S*H episode to help me slow down:

“I do one thing at a time and I do it well.”

Next time we’ll talk about how physical rest goes hand-in-hand with emotional rest. For now, I’d like to remind you of this truth:

Praying for all of you…

…

…

http://www.whatchristianswanttoknow.com/bible-verses-about-rest-20-important-scriptures/

The Price of Identifying (repost from Joni Eareckson Tada)

Since the children have flesh and blood, he too shared in their humanity. —Hebrews 2:14

When we are hurting, if there is one thing that eases our pain or grief, it is this: We want someone to understand. We want somebody to really identify with us, to have some idea of what we’re enduring.

It is certainly like that for me. I hate feeling alone and alienated in those dark times when my paralysis seems overwhelming. On my really rough days, it helps to remember what the Bible tells us about Jesus identifying with us in our sufferings. It says that He was tested and tried in every way like us. That helps! When it comes to suffering, the Lord Jesus has gone ahead of us, and has intimate, experiential, first-hand knowledge of the pain, the weight, the frustration, and the struggle. He appreciates. He understands. He connects.

But it works both ways! Not only does Christ identify with us in our suffering, we identify with Him in His suffering. He identifies with us, and we identify with Him. He appreciates all that it means to be human, and we appreciate all that His divine grace supplies. Through suffering, He participates in our humanity; through suffering, we participate in His divinity.

So why do we struggle so to escape our suffering? Why do we look so desperately for release? I suppose this is why I’m not earnestly seeking to be healed and raised up out of this wheelchair. I see this trial of mine as a window into the heart of Jesus. Suffering is a connecting point between my Savior and me. And when I see His great love on the cross, it gives me courage to take up my cross and follow Him.

Photo credit

Do you want someone to understand what you are going through today? Turn to Jesus. When you do, you will better understand what He has gone through for you.

Lord Jesus, sometimes in my grief or suffering I just want to run away and hide. Help me, Savior, to run away to you, and to hide in you.

Joni and Friends: Taken from Pearls of Great Price.  Copyright © 2006 by Joni Eareckson Tada.  Used by permission.  Zondervan Publishing House, Grand Rapids, Michigan 49530

My Hair Hurts!

I couldn’t believe it when I found this image at A New Kind of Normal. Jamee lives with multiple chronic illnesses so she understands the sentiment in this image.

I can’t tell you how often I have said that my hair hurts, or have had to change clothes because seams and tags cause extreme itchiness and sometimes even pain. I have cut the tags out of most of my clothing and am thankful for the companies which are now imprinting clothing with the information in lieu of a tag.

These are just a couple of my symptoms of my Fibromyalgia Syndrome (FMS) and Chronic Fatigue Immune Dysfunction Syndrome (CFIDS). Oh, and let’s not forget the chronic migraines that are liberally sprinkled in with everything else.

Next week is National Invisible Chronic Illness Awareness Week. Please check out the Invisible Disabilities site to find out more about what’s going on next week, or just to learn more about chronic illnesses that seem invisible to others but are very real to those of us who struggle with one or multiple of these illnesses every single day.

Apparently this flareup I’ve been going through has affected me more than I realized because I thought I had already composed this post and scheduled it for today but I had only started it, typing in only a few lines before laying it aside several weeks ago. But that’s the way my body works in these “new normal” days. As I type this, I am struggling for each word so I guess it’s time to stop typing and publish this.

Before I go, though, I want to keep it real by saying that throughout my many struggles with these chronic illnesses, I have many days where despair threatens to take over. Sometimes it does. But most times I can think clearly enough to remember that I have a Hope that doesn’t quit and never fails me:

But those who hope in the Lord will renew their strength.
They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint. —Isaiah 40:31

Beloved, no matter what you’re going through, hold on tight to that Hope! One day all pain and suffering will be erased for those who believe in the mighty and saving power of the Hope of the world: our Lord Jesus Christ! Those who trust in His saving grace will be able to live pain-free for eternity. The physical pain we feel now is nothing compared to the extreme joy we will experience in our heavenly homes.

To find out more about the saving power of Jesus Christ, please read this or contact me. I would be so happy to answer your questions!

In His powerful and comforting grip,