Monthly Archives: April 2014

Fibromyalgia Awareness Day – May 12, 2014

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Fibromyalgia – Make It Visible Photo Credit: National Fibromyalgia Association (NFA)

I am excited! In less than one day, it will be the beginning of a new month and also the time Fibromyalgia patients all over the world will celebrate Fibromyalgia Awareness Day May 12, 2014.

In honor of this auspicious day, we will not only celebrate on the 12th but the celebration will last all month. Please join us and come together to “make it visible” “make fibro visible”.

Share information, pictures, and inspirational stories. Wear purple. Attend empowering events, and make your voice heard on any and all social media platforms. Let your friends know on Twitter, Facebook, BlogHer, and any platform you are visible.

The National Fibromyalgia & Chronic Pain Association (NFMCPA) and National Fibromyalgia Association (NFA) have tons of information available on their website and Facebook page for Fibromyalgia patients as well as family, friends, and all who may be interested in learning more or becoming an active participant. They also have some cool Fibromyalgia apparel you can take advantage of. There are many events scheduled throughout the month of May, too many to list here. Please visit the NFMCPA and NFA website and for more information.

Additionally, I found a cool hashtag the NFA shared on its Facebook page and I would like to share with you in the hopes you share with others when you spread the word to increase awareness. #makefibrovisible

A-Day-Aware-for-homepage-2014Fibromyalgia Awareness Day is May 12, 2014.

Here’s to more pain-free days filled with laughter, joy, and praise!

In the meantime, thanks for stopping by. -JD

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What Matters?

What MattersWe were looking for some papers  today and stumbled upon some poems I wrote in my 2nd year of college at the ripe old age of 34, of which my English professor’s critique was pretty good.

What astounded me most was how the poems were a reflection of the emotions I was feeling at that point and time in my life in regards to people who either were suffering at no fault of their own or were struggling just to make it in this life.

Even more surprising is it appears much of what I felt then seems to have come full circle to the place where I am now in my life. It also tells me how passionate I was then and still am now about people and the world we exist in. Wow… I’ve come a long ways, twenty years to be exact, and I still care.  I still have a heart and passion for children, the sick, and people from all walks of life. Amazing!

Over the next few posts, in between my normal posts, I will step out of my comfort zone and share them with you. This will be the first of my “mini-series.” I hope you enjoy.

What Matters?

It doesn’t make a difference what color you are,
Because love should conquer all near or far
Nor does it make a difference why we are here
Because in the end we all have that fear
That death is evident and we all will die,
But what should matter are the blue skies and sun
And what we all can do to live together peacefully as one.

 

What matters is the air we breathe,
The starving people in this world we need to feed.
The precious meaning of life itself,
In whatever situation we find ourselves
The endless efforts to find a cure for AIDS,
Through benefits and charities with funds that are raised.

 

What matters is the opportunity we all share,
When we are healthy and alive,
Because with the way the world is today
It’s a never ending struggle to survive.
Life is what matters, so live it, love it, or leave it be
Because we are not here for eternity. 

-JD

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Declare and Decree, I’m Blessed. I Got the Victory!

wpid-img_20140429_070408.jpgGood morning!

Blessed are the poor in spirit. Blessed are the meek. God is good. You will be blessed going in and coming out. Shout victory!

No weapon formed against you shall prosper. No harm will come to you. You’re too blessed to be stressed about anything. God has been, will be, and is good to you.

Declare and decree, I’m blessed. I got the victory!

Matthew 5:3-12 “Blessed are the poor in spirit, for theirs is the kingdom of heaven. 4 Blessed are those who mourn, for they will be comforted. 5 Blessed are the meek, for they will inherit the earth. 6 Blessed are those who hunger and thirst for righteousness, for they will be filled. 7 Blessed are the merciful, for they will be shown mercy. 8 Blessed are the pure in heart, for they will see God. 9 Blessed are the peacemakers, for they will be called children of God. 10 Blessed are those who are persecuted because of righteousness, for theirs is the kingdom of heaven. 11 “Blessed are you when people insult you, persecute you and falsely say all kinds of evil against you because of me. 12 Rejoice and be glad, because great is your reward in heaven, for in the same way they persecuted the prophets who were before you. (NIV)

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If There Was Less Pain, I Would…If I Could – Promote Yourself

This is my poem, If There Was Less Pain, I Would…If I Could, featured on poetreecreations.org’s blog today. Wow.. I’m ecstatic, excited, and thrilled! Thank you poetreecreations for making my day! Please take a moment to visit their blog and see the beautiful forms of poetry expression from others. It will be well worth it. Be blessed! -JD

poetreecreations.wordpress.com

 

I am Joy and I want the world to know,

      what I would do if this were so.

 

If I lived in a world with less pain, this is what you would see.

      A world filled with less struggles and strain, aching to be free.

 

I would be a voice that does not go unheard.

      But instead be one of distinction to serve,

      a community of people with better places to go

      in their provision of care that exceeds “the pain world” we’ve come to know.

 

Pain as it is, with treatment that works.

      Not pushed or stereotyped merely because we “irk”,

      the professional that thinks we all are the same,

      prescribing a drug that has the same name,

      even if our conditions are in different range.

 

If I were this person this is how it would be,

      you could hear my voice but you can’t…

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Rise Up and Be Counted!

wpid-img_20140425_072821.jpgGood morning! Rise up and be counted. Make today count. No matter what you face, God has already worked it out. Glorify God. Praise the Lord!

Now is the time to take a stand. Don’t let anything stand in your way. Stand up for the Lord. Stand firm in faith. Be counted today.

Be blessed! -JD

1 Corinthians 16:13-14 “Be on your guard; stand firm in the faith; be courageous; be strong. 14 Do everything in love.” (NIV)

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Everything Belongs to God

wpid-img_20140423_155844.jpgThe world owes you nothing. Everything belongs to God. Do not conform. Be ye transformed. Take up your cross. Serve God with all your heart.

Be blessed! -JD

Romans 12:2 “Do not conform to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God’s will is–his good, pleasing and perfect will.” (NIV)

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I Know I’ve been Picked Out to be Picked On but Racial Profiling is Wrong!

I Know I’ve Been Picked OutIt was a Wednesday, midweek upon me, and for the most part the morning started out well. I had little time to get to the store to find one item in particular in preparation for our upcoming Women’s Prayer Breakfast scheduled that following Saturday morning.

I needed to find a dress. Not that I didn’t have any but wanted one in particular that was pastel in color. I woke that morning with joy in my heart, feeling I could conquer the world in spite of not getting sleep the night before or struggling with pain when I woke. I talked with my Mom earlier who after a long conversation thanked me for encouraging her that day. And in some way I felt I had encouraged myself too and decided nothing would take away my joy that day.

I had a few places in mind but decided on one well-known department store (that I will not mention to keep their reputation in tact) that I normally do not shop at but because it was on my way to my sister’s I would stop there first and then make my way to her house. When I arrived at the store I was a bit tired after being in the sun longer than expected but still pressed towards my goal. I found a dress that was simple, yet I felt was elegant enough to suit the cause. Not to mention I fell in love with it! It was a dress made of thin crochet and you can clearly see everything through it because there was no slip inside (that should have been attached) to hide my bodily imperfections. 🙂 Even though I love my body, I knew I needed to have the slip and said I would look for one in the store later. I went to try it on.

I notified the sales lady at the fitting room of the issue and she said she would let the manager know before I check out. She complimented me on the dress and said how she thought it was beautiful. After trying it on, I stopped first at their lingerie section to look for a slip I thought may go with the dress but didn’t find one. I went back to the rack hoping to find the same dress with a slip to see what type I needed and to my surprise I found the same item with a slip inside. Yay! I was excited. My initial thought, “Try on the slip with the dress before making my final decision to purchase it.” The problem; it was a size 4 and I needed a size 8 (well…I can fit into a size 6 at times lol). But I didn’t let that stop me. Although I did have a slip at home, it was not the same color as this one but because the slip seemed large enough to fit, all I needed to do first was see how it may look under the dress. I proceeded to do just that.

At the dressing room was another sales lady along with the one I encountered the first time and she explained the situation to her. I told her I found the same dress with a slip but it did not have the designer name on the label and upon inspection we agreed it was not the same size. The other sales lady who I will call “Miss I Need To Do Things My Way” interjected with her opinion regarding the store policy on items received and made it clear the dress I had could not be paired with the slip because it did not go with that item nor would they allow me to purchase it that way. “You cannot take an item and put it with another item to purchase.” Me:”Ma’am I know that” (by that time I was irritated). She further proceeded to explain that sometimes items come in to the store missing other items but they sell the item as is. Me: “Ok” ,“Mindless chatter.”

I go into the dressing room, try on the dress with the slip and loved it! I come out and notice now there are three sales ladies, not realizing until later that the third one was an area supervisor who I will call Ms. Very Nice Area Supervisor. I didn’t think anything of it because like I said, I had one goal in mind; joy in my heart to get what I came for and not let anything or anyone ruin my day. I needed a dress and that was my only goal. The third lady looked at the dress and expressed how beautiful and unique it was. She could see my enthusiasm as I expressed the same thing and told her I would be purchasing the dress and will place the slip back with the original dress, and deal with having to find a slip at a different store. I said, “Thank you” and left.

I returned to the rack and placed the item back. Went to look at the racks once more to see if maybe another dress was there and I may have missed it and I look up and notice the Loss Prevention security guy who I’ll call “Mr. I Want To Be An Accomplice” to “Miss I Need To Do Things My Way” slowly walking opposite of me on another aisle watching me on the aisle. Mind you I was the only one there and the only one of my kind in the store. I thought, “Is he following me?” So I went to another aisle, and lo and behold, there he was again. But I didn’t make the connection and shook it off … until I decided to go to check out.

And who do I find at the register that I suspected was not supposed to be there because there were only two people in line and I did not hear over the intercom that they needed another cashier to assist; Miss I Need To Do Things My Way. I was like, “Wow… is it that serious?” I noticed her talking with Mr. I Want To Be An Accomplice and they both were looking over at me while they were conversing as I was standing in line so I could only assume the conversation was about me. I was like, “Okay, something’s up. Be on my best behavior but approach with caution.”

There was another person in front of me who Miss I Need To Do Things My Way easily could have waited on but this is what I observed. She began to fumble around the register, went back and forth, waiting for the cashier across from her to finish with her customer in order to make sure she herself waits specifically on me. The other cashier finishes and signals the customer in front of me to the register. Miss I Need To Do Things My Way then said to me, “I can help you over here.” Me: “That’s okay. I will wait for the other cashier.”

But then something happened that made me furious. She yells across the room to the other cashier while the other customer is standing there, “Make sure the slip is not in her dress” pointing at me. Whoa…. Did you really have to do that? Did you really have to put me on blast, embarrass me in front of the customers and the whole store, letting everyone think I’m trying to steal something out of your store, and make your point known?”

By that time I was livid, got out of the line, and went to try and explain my dissatisfaction to Mr. I Want To Be An Accomplice who looked at me like I was crazy after taking sides with Miss I Need To Do Things My Way. After losing my breath and my composure (a little), he decided to ask if I needed to talk with a supervisor. Me: “Yes” with my head minimally tilted to the side.

Ms. Nice Area Supervisor comes up, I remember her now, talk with her and explain my issue and dissatisfaction with the fact that I felt I had been picked out to be picked on and racially profiling me was wrong! She apologized, agreed, and noted the issue should not have been taken that far because it was settled at the dressing room where she witnessed it and where I made my intentions clear. She also apologized for my having to experience being discriminated against, made a disclaimer, and wanted me to know the store does not make this a common practice towards their customers. I thanked her for her compassion and honesty as tears welled up in my eyes not because I was angry but because I was hurt and truly embarrassed especially having customers look at me is if I did something wrong.

I gave the items I desired to purchase to Ms. Nice Area Supervisor and asked that she hold them until I come in another day because I really wanted them but I was too upset and just wanted to leave the store. And I did. She took the items and said she would hold them for as long as I needed, gave me the name of the store manager, took my information, and promised she would have her call me.

Three days later I spoke with who I will call “Ms. I’m Not So Sure About This Store Manager” who managed to giggle through most of my explanation of the incident and made excuses for Miss I Need To Do Things My Way and Mr. I Want To Be An Accomplice saying he was relatively new, her too (2 weeks at that store) and he was not up to date on store policy but will be talked to.

I acknowledged her statements but when I advised her so that she is aware that I will be making a formal complaint to their corporate office, she quietly listened. I also told her I’ve had this issue happen before years ago with another huge, well-known retail store and took it to the NAACP and it was resolved amicably, gift card included, but I didn’t feel this needed to go that far. However after transferring detailed thoughts of the incident from my head to here, I’m considering it.

She apologized for the entire incident and the actions of her store personnel, made a disclaimer about the store’s policy regarding customers, and promised she would reprimand both Miss I Need To Do Things My Way and Mr. I Want To Be An Accomplice. I advised her I will follow up with her next week regarding the items.

In my opinion, this did not have to happen because Miss I Need To Do Things My Way needed to make assumptions about me based on the color of my skin instead of looking beyond her personal prejudices to avoid stereotyping and falsely accusing. And to make matters worse, she blatantly let me know of her intentions when she singled me out and her assumptions of who I was when making the decision to unfairly stigmatize by racially profiling when she purposely involved Mr. I Want To Be An Accomplice.

I know I’ve been picked out to be picked on but racial profiling is wrong! I had to address this matter and wanted to speak out about it today because no one should have to experience what I did, based on the color of their skin. We are all equal and should be treated that way no matter where we are or what people may assume about us on any given day. Stop racial profiling. Racial profiling is wrong. Can’t we all just get along? Please be careful who you pick on.

Thank you for listening! –JD

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He is Risen! Celebrate Jesus Christ our Savior!

He is Risen! Celebrate the SaviorOn Sunday many will celebrate the Easter holiday with family and friends, sharing Easter eggs, Easter dinner, and chocolate bunny rabbits. Some will be dressed in pastel colored clothes and watch children enjoy candy-filled Easter baskets.

For believers, the real reason why we celebrate the day; our Lord Jesus Christ was resurrected. It is the miraculous event. He is risen! Celebrate his resurrection! For God so loved the world that he gave his only begotten Son, that whosoever believeth in him should not perish, but have everlasting life (John 3:16).

Jesus was forced to bear his own cross. With nail-scarred hands, they nailed him to and hung him between two thieves on the cross. He was persecuted and beat. He was wounded; nails were driven through his feet. They placed a crown of thorns on his head. They pierced his side later to make sure he was dead. He shed his blood. He was crucified, nailed to the cross. He sacrificed his life, buried and nailed all our sins to the cross.

They buried him in a tomb. A large stone was placed in front to seal it. Soldiers stood on guard to watch over it. An angel rolled back the stone. On the third day Jesus rose. An angel announced on the third day Jesus was no longer in the tomb. They told them to go and see for themselves. When they went to see, Jesus met and greeted them. And they came up and took hold of His feet and worshiped Him. (Matthew 28:9)

This is what the day, Easter Sunday, is truly about; our Lord and Savior Jesus Christ. He was crucified, died, and rose again for atonement of our sins. He knew he would suffer… “and He said to them, “Thus it is written, that the Christ would suffer and rise again from the dead the third day, and that repentance for forgiveness of sins would be proclaimed in His name to all the nations, beginning from Jerusalem’” (Luke 24:46-47).

He knew his Father’s will and laid down his life for us. He paid the price on the cross for us. “For even the Son of Man did not come to be served, but to serve others, and to give His life as a ransom for many (Mark 10:45).” As you celebrate Easter, celebrate what Christ did for us. He took our punishment. He died for us. Rejoice! Christ loves us.

His resurrection is so important. Celebrate not just today.  Celebrate Jesus’ resurrection every day. He is risen! Celebrate Jesus Christ our Savior!

Be blessed! -JD

Matthew 28:5-7; 9 “5 The angel said to the women, “Do not be afraid; for I know that you are looking for Jesus who has been crucified. 6 “He is not here, for He has risen, just as He said. Come, see the place where He was lying. 7 “Go quickly and tell His disciples that He has risen from the dead; and behold, He is going ahead of you into Galilee, there you will see Him; behold, I have told you.”… 9 Suddenly Jesus met them. “Greetings,” he said. (NASB, NIV)

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Passion Week – Fasting and Prayer: My Time with God

wpid-textgram_1397469720.pngOur church fast officially begins now as we enter Passion Week. and includes no social media 6am to 6pm or not at all. Saturday, i began preparation of my heart and mind in advance to fast and pray. I will be taking a break from social media. My sacrifice: no social media until 4/20. Please keep me in your prayers. I will pray for you too.

#GodBless -JD

Daniel 9:3 Then I turned to the Lord God and prayed and asked him for help. To show my sadness, I fasted, put on rough cloth, and sat in ashes.(NCV)

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You’ve Been Picked Out to be Picked On….Rejoice! God is Pruning You to Bear Good Fruit!

wpid-img_20140409_205929.jpgEvery experience is part of God’s pruning process. You’ve been picked out to be picked on. He cuts off fruitless branches and prunes fruitful ones.

Jesus tells us no branch can bear fruit by itself (John 15:4). When a branch is cut off from the truck of a tree, it’s dead.

Branches rely on their connection to the truck to receive nutrients to bear fruit. So are we to rely on God to bear good fruit. Just as the branches rely on its connection to the truck for physical nourishment, we must learn to depend solely on our connection to God for spiritual sustenance.

Fruit of the Holy Spirit—love, joy, peace, patience, goodness, kindness, gentleness, faithfulness and self-control (Galatians 5:22-23) is the fruit we produce. We grow spiritually. We work to become more like Christ. We rely on our connection to Him for our spiritual life. He is our source of life.

When trials and trouble beseech you, don’t fret. God is pruning you, preparing you for greater. You’ve been picked out to be picked on… Rejoice! God is pruning you to bear good fruit!

Be blessed! -JD

John 15:1-2 “I am the true vine, and My Father is the vinedresser. 2″Every branch in Me that does not bear fruit, He takes away; and every branch that bears fruit, He prunes it so that it may bear more fruit. 3″You are already clean because of the word which I have spoken to you. 4″Abide in Me, and I in you. As the branch cannot bear fruit of itself unless it abides in the vine, so neither can you unless you abide in Me. (NASB)

 

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National Day of Prayer – Thursday, May 1, 2014

On Thursday, May 1, 2014 across America the nation will gather to participate in National Day of Prayer (NDP). The theme is “One Voice, United in Prayer” and the chosen scripture will be Romans 15:6 “’So that with one mind and one voice you may glorify the God and Father of our Lord Jesus Christ” (National Day of Prayer).

On National Day of Prayer, we will have the opportunity to come together collectively as a nation interceding on behalf of others in prayer, corporately agreeing in obedience to God for someone’s deliverance regardless of what we don’t know about their situation. Believing, through prayer, God will change the course of events in spite of the situation.

With all that is evolving around us in the world today, we are in desperate need of prayer for our nation, world affairs on a national scale, conflict we continue to see met in the US and around the world with state and local governments, churches, leaders, ministers, and families only God can resolve through prayer.

On May 1, 2014 make a special commitment to intercede in special prayer for others. Honor the day the nation will exercise one of the most prized freedoms, rightfully, in worship, praise, and in prayer to God.

It is with sincere humility that I ask whatever you may be doing this day, please take a moment to be a part of and share in this important NDP event. Please mark your calendars, save the date, and prepare to participate in prayer.

In spite of religious backgrounds or personal preferences, let each of us come together in agreement and stand in unity to intercede for the nation with the ultimate goal to see God’s healing power manifest through the power of prayer that peace, unity, and deliverance may be found in the lives of many. Prayer changes things. It is communion and relationship with God. It is the key that unlocks our faith. With prayer, we can transform the world.

Be blessed! -JD

1 Timothy 2:1-2 “I urge, then, first of all, that petitions, prayers, intercession and thanksgiving be made for all people– 2 for all kings and all those in authority, that we may live peaceful and quiet lives in all godliness and holiness.” (NIV)

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Salvation is a gift God freely gives. Accept it freely!

wpid-textgram_1397078799.pngSalvation is not earned. It’s a gift from God yet can be lost when we stray away from the narrow path. Accept freely what God has given; Salvation.

The true gift of Christ is absolutely free. God gave His One and only Son to die for you and me. The only thing you need to do by faith is accept responsibility and receive the gift God has given you for free!

Salvation is a gift God freely gives. Accept it freely! The gift of God is eternal life through Christ Jesus.

Be blessed! -JD

John 3:16-17 “For God so loved the world, that he gave his only Son, that whoever believes in him should not perish but have eternal life. 17 For God did not send his Son into the world to condemn the world, but in order that the world might be saved through him.” (ESV)

 

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Stay focused. God has given you the power and authority to trample on snakes and scorpions!

wpid-img_20140405_101554.jpgWhen we have godly wisdom, wise counsel from loved ones will make a difference. And will lead us to make wise decisions even when we aren’t aware of the reason.

I had an epiphany the other day when talking to my mother and couldn’t help but share my thoughts, along with her words of wisdom that touched my heart.

My mom told me a story about a man who found a snake ill in front his home. He took him in and cared for him and nursed him back to health. Once the snake was well and back to his old self, he turned around and bit the man. The man asked him, “Why did you bite me after all I did for you?” The snake answered, “You knew who I was before you helped me.” End of story.

When people show you who they are, believe them. No matter how much you may help them, you can’t change them. Be careful of the people you let in your inner circle and ones you associate with. Everybody is not your friend. Be conscious of and know the difference between acquaintances and true friends. Use godly wisdom and discernment. God will show you who they are. There is a ram in the bush (Genesis 22:13). It is the Lord your God who goes before you. He is with you. He will not forsake you.

Snakes in the grass will slither and try to sneak up on you only to hurt you or frustrate your purpose to keep it from being fulfilled. Don’t try to handle it yourself. Do as Paul did when the snake bit him. He did not suffer any ill effects (Acts 28:3-5). He remained faithful in his service to God and allowed Him to intervene. God protected him. Believe. Fully trust in Him.

Be prepared when the snake comes to kill, steal, and destroy. Arm yourself with prayer. We have power over evil spirits. Put on the full armor of God. Don’t be afraid of snakes in the grass. Fight the enemy with the word. God is sovereign. Take him at his word. He’s faithful. Let him intervene. He can and will protect you from any and everything.

One of the greatest challenges when your faith is tested will be who you choose to trust. The enemy will persuade you. Resist. God got you!

Do your best to help others. Stay focused. God has given you the power and authority to trample on snakes and scorpions. God’s wonder works in and through you. Snakes can be stopped in their tracks too. Remember, God has all power. Trust in Him no matter what the enemy tries to do to you. You will defeat the enemy. God will see for you.

Be blessed! -JD

Luke 10:19 “I have given you authority to trample on snakes and scorpions and to overcome all the power of the enemy; nothing will harm you.” (NIV)

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When doubt tries to enter the recesses of your mind, have no fear. Send it packing! Tell it, “God lives here!”

wpid-textgram_1397056495.pngGood morning! We may not see evidence of God working in our life instantly. He’s performing miracles on our behalf, sight unseen. Have Faith the size of a mustard seed. Believe!

Don’t let doubt or fear cloud your judgment today. Think positively. Have faith. Praise God! You’re here. Some didn’t make it today. God’s merciful. His grace kept you. He made a way.

Believers, doubt has no place in your life. It doesn’t live here. When doubt tries to enter the recesses of your mind, have no fear. Send it packing! Tell it, “God lives here!”

Be blessed! -JD

1 Thessalonians 5:24 “He who calls you is faithful, who also will do it. (HCSB)

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A Small Token of Morning Inspiration!

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Good morning, afternoon, evening to you! Here’s a simple token of morning inspiration for you.

We may not know what’s in store for us today. God, we praise you in advance, come what may. Thank you for making a way out of no way!

Be blessed! -JD

Deuteronomy 28:1-3 “Now if you faithfully obey the Lord your God and are careful to follow all His commands I am giving you today,  the Lord your God will put you far above all the nations of the earth. 2 All these blessings will come and overtake  you, because you obey the Lord your God: 3 You will be blessed in the city and blessed in the country. (HCSB)

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Don’t Worry About the Devil. He’ll Lie to You… God’s Word is Truth!

wpid-textgram_1396154998.pngGreater is he that is in you than he that is in the world. The devil doesn’t want you to believe that at all. He wants you to fail. God won’t let you. God is faithful. He got you!

Don’t worry about the devil. He’ll lie to you. Trust in God. God’s Word is truth.

Be blessed! -JD

Ephesians 2:10 For we are his workmanship, created in Christ Jesus for good works, which God prepared beforehand, that we should walk in them.(ESV)

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Dear Fibromyalgia Stakeholders: As Promised, a Message from the United States Food and Drug Administration

textgramTo my Fellow Fibromyalgia patients, friends, and loved ones:

I received an email today from the United States Food and Drug Administration (FDA) notifying participants of the full recording that is now available from the meeting held with fibromyalgia patients March 26, 2014. I have provided below the email in its entirety as well as  links the FDA provided for anyone who is interested in what was discussed and for those who missed the meeting, as well as for those who may be interested in submitting comments. Please note the period to submit comments will close May 26, 2014.

As a fibromyalgia patient and advocate for change, I encourage everyone to please take a moment to review the meeting details as well as submit your comments and let your voices may be heard so that you too can make a difference. Your comments and efforts will be greatly appreciated!

Thank you! -JD

A Message from United States Food and Drug Administration

Dear fibromyalgia meeting attendees,

Thank you for attending the public meeting on fibromyalgia patient-focused drug development! FDA collected valuable information on fibromyalgia, the impact it has on patients’ lives, and patients’ perspectives on treatment options. We truly appreciate the courage, effort and time invested from everyone who was able to attend the meeting in person or on the web.

We know that not everyone who wanted to come to this meeting was able to attend. For anyone who missed the meeting or is interested in what was discussed, we have posted a full recording of the meeting on our website: http://www.fda.gov/forindustry/userfees/prescriptiondruguserfee/ucm363203.htm.

In addition to the input we gathered at the March 26 meeting, we encourage fibromyalgia patients, caregivers, and other stakeholders to submit written comments to the online public docket. The comment period closes on May 26, 2014. Submit your comments through this website: http://www.regulations.gov/#!documentDetail;D=FDA-2013-N-1041-0004.

FDA is particularly interested in hearing patients’ perspectives on the questions outlined in the Federal Register Notice that announced this meeting. These questions are pasted below for your reference, and the Federal Register Notice can be found here: https://www.federalregister.gov/articles/2013/09/23/2013-23019/fibromyalgia-public-meeting-on-patient-focused-drug-development.

Again, thank you to everyone who attended the March 26 meeting. If you have any questions, please email PatientFocused@fda.hhs.gov.

Discussion Questions

Topic 1: Disease symptoms and daily impacts that matter most to patients

1) Of all the symptoms that you experience because of your condition, which 1-3 symptoms have the most significant impact on your life? (Examples may include chronic pain, fatigue, difficulty concentrating, sleep disorders, etc.)

2) Are there specific activities that are important to you but that you cannot do at all or as fully as you would like because of your condition? (Examples of activities may include sleeping through the night, daily hygiene, driving, household chores, etc.)

a) How do your symptoms and their negative impacts affect your daily life on the best days? On the worst days?

3) How have your condition and its symptoms changed over time?

a) Do your symptoms come and go? If so, do you know of anything that makes your symptoms better? Worse?

4) What worries you most about your condition?

Topic 2: Patients’ perspectives on current approaches to treating fibromyalgia

1) What are you currently doing to help treat your condition or its symptoms? (Examples may include prescription medicines, over-the-counter products, and other therapies including non-drug therapies such as exercise.)

a) What specific symptoms do your treatments address?

b) How has your treatment regimen changed over time, and why?

2) How well does your current treatment regimen treat the most significant symptoms of your disease?

a) How well do these treatments improve your ability to do specific activities that are important to you in your daily life?

b) How well have these treatments worked for you as your condition has changed over time?

3) What are the most significant downsides to your current treatments, and how do they affect your daily life? (Examples of downsides may include bothersome side effects, going to the hospital for treatment, restrictions on driving, etc.)

4) What specific things would you look for in an ideal treatment for your condition?

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