Tag Archives: chronic pain

In Honor of September Pain Awareness Month: “If There Was Less Pain, I Would….If I Could”

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 see me.
Because if I was in less pain I would be free.

Free to live with less struggles and despair,
but with a greater hope to overcome obstacles I can bear.

Free to speak without feeling ashamed
of the world I now exist in with the devastation of pain.

Free to choose a doctor that will openly listen to me
and not place me in the same category.

Free to live out the goals I so desire,
without constantly feeling sick, weak, or tired.

Free to be the person I was created to be,
to live out the purpose that was pre-destined for me.

With more strength than I now have that would carry me through,
a life filled with courage and hope anew.

If I lived in a world with less pain “I” would be,
the person behind the door you cannot see.
The person longing, waiting…to be free.

Free to be Joy. Free to be me!

by Joy Darden

To raise awareness about the need for effective pain care in response to the former American Pain Foundation’s (APF) If I Lived in a World with Less Pain, I Could…. campaign to SECURE A FIRST-EVER PRESIDENTIAL PROCLAMATION OFFICIALLY NAMING EVERY SEPTEMBER NATIONAL PAIN AWARENESS MONTH, my family helped create this video “If I Lived in a World with Less Pain, I Could…” to share my voice as well as spread the word to bring awareness to what I believe is such an important issue in the lives of those who live with pain.

The video represents my message to PRESIDENT OBAMA what MY WORLD WITH LESS PAIN would be like and what I Would Do If I Could…if I were not in pain. It gives me an opportunity to make a difference in the lives of others as I work to bring national awareness to the “hidden” epidemic of pain (APF) so that those who suffer with pain will have a right to effective care and treatment; because “pain” is not just an individual or local problem. It is a national healthcare crisis. It does not only affect pain sufferers but it affects families, friends, associates and anyone who is connected to its world. Even though it may not directly affect every individual, the physical, financial and emotional affects can be devastating to the pain sufferer and the families of those who will ultimately suffer. But with your help, we all can make a difference.

Please join me in support of this cause and spread the word DURING THE MONTH OF SEPTEMBER or UNTIL A PRESIDENTIAL PROCLAMATION IS SECURED by asking others to spread the word on Twitter, Facebook, Google+ Instagram, Periscope, Pinterest, or any other social media outlet. Your support would be greatly appreciated! Thank you.

Be blessed! – JD

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September Pain Awareness Month – Day 10 of 30. I’m Still Fighting For A Presidential Proclamation

September is Pain Awareness Month--The month of September is Pain Awareness month and as many of you may already know since we are in the 10th day of September, it is a time where many across the nation will help raise awareness of issues surrounding the need for effective treatment for millions of Americans around the world who suffer with pain.

As a semi-silent pain advocate and one who is truly passionate about the cause of pain awareness, I try my best to do what I can when I can to make a difference. Before I was diagnosed with Fibromyalgia and a host of other conditions that cause me to suffer daily with chronic pain, I could not imagine what it would be like to be in pain indefinitely. Or knew of anyone who experienced what I find myself experiencing every day for over the past 10 years. Even so, I cannot imagine one individual that does not know someone who suffers with pain.

What I have learned throughout this pain journey, it does not discriminate. It can affect anyone at any given time without any warning. You never know when it can happen to you. And sadly, I find it is not until someone experiences pain at a level beyond comprehension that will last past infinity, they may never understand the significance of the need for effective treatment and care. It is my hope one day, new treatment and new research develops that will help other American pain sufferers find some form of normalcy and have a better quality of life as a result of their findings.

There are a number of organizations that offer information and resources to consider during the month of September. Please take a moment to see how you can get involved. It can be something as simple as calling a friend or love one you know who suffers with pain and letting them know they can count on you for support just by checking on them from time to time. Love and compassion can go a long way.

Lastly, you can visit websites of various pain organizations like U.S. Pain Foundation, National Fibromyalgia & Chronic Pain Association (NFMCPA), or Power of Pain to get involved with planned events and activities. And by all means don’t just get involved during the month of September but show your support throughout the year. You don’t know how much your support, no matter how big or small, can change a life.

As for me, I have been fighting for a first-ever Presidential proclamation naming September National Pain Awareness month for the past four years. I am still hopeful one day God will send a divine connection in answer to my prayer and the proclamation will be signed. I won’t give up. I will continue to fight until a proclamation is received.

As such, I created a video with the help of my family in 2011 titled, If There Was Less Pain, I Could…. in response to a campaign held by the former American Pain Foundation (APF) organization. The video, which can be found on YouTube, represents my message to President Obama detailing, in a poem, what my world would be like and what I would do, if I could, if there was less pain.

The door in the video symbolizes people like myself who hide behind the mask of pain. It speaks volumes of what we have come to know as the “hidden epidemic of pain” or the “invisible disability” no one knows about or wants to get to know about. Although you can see the door, you can’t see the person behind the door, longing waiting to be free; free to be ME. Please feel free to check out my video when you get a chance.

In the meantime and in between time, if you haven’t done so already, I urge you to become a part of and show your support for the cause and help millions like myself raise awareness. Join me and help spread awareness and support my efforts to secure a first-ever Presidential proclamation by sharing my YouTube link as well as my blog link on Twitter, Facebook, YouTube, Instagram, and any other social media outlet. Thanks for your support.

Let’s make this one of the best Pain Awareness months ever. Show your support. Wear PURPLE!

Be blessed! – JD

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Today is Fibromyalgia Awareness Day. Take Back Your Voice. Make the Invisible Disability Visible. Wear Purple!

Fibromyalgia Friends Pain WarriorsI’m wearing purple in honor of Fibromyalgia Awareness Day. I am a pain warrior. I’m taking back my voice to raise awareness.

I have a condition but my condition doesn’t have me. I may have been diagnosed with a disease but this disease does not define me.

I may suffer with symptoms of fatigue, chronic pain, insomnia, muscle spasms, loss of concentration, and memory loss to name a few. But you wouldn’t know it when you see me. When you say, “But you don’t look sick” you’re right I don’t. But I am sick. I don’t need to look like it for you to know.

I dress well. I play the part. I don’t look like what I’ve been through. No one can see on the outside the pain I go through. I may be discouraged at times because of a lack of acceptance, support, and belief from doctors, family, and friends. But I don’t let it stop me. I am destined for greatness. This condition will not make or break me.

For every person who suffers with fibromyalgia and chronic pain, I salute you today. Know that you are not alone. We are in this fight together. Be strong. Don’t let the negativity or disbelief of others define you or make you feel ashamed because you know you are sick. As long as you know how you feel, you don’t need to look like it.

Some may never understand your struggle. They don’t need to. Persevere. You are beautiful. No matter how much pain you’re in, do your best to live your best life. You are more than a conqueror.

Today is Fibromyalgia Awareness Day. Join me. You have a voice. Let’s make the invisible disability visible. Take back your voice. Raise awareness to help others better understand this condition. We’re hoping for a cure. When we all join forces, together, we can make a difference.

To My Fellow Fibromyalgia Friends, Chronic Pain Warriors, and Love Ones: Here’s to more pain-free days filled with laughter, joy, and praise! Proudly Wear Purple!

Find an event or call a pain warrior you may know and share your love and support. Or just wear purple.

Be blessed! –JD

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September Pain Awareness Month 2014 – Let’s Go All Out to Make It One of the Best Ever!

wpid-textgram_1409547189.pngTomorrow many across the nation will participate in September Pain Awareness Month. As a chronic pain sufferer and Fibromyalgia patient, not only the month of September but every day is an opportunity for me to spread awareness and increase efforts to make the “hidden”epidemic of pain visible. I work daily to be one voice.

Every September, I make a special effort to share my video and my voice in support of this cause as well as continue my fight to secure a first-ever Presidential Proclamation naming every September National Pain Awareness Month. I may not have ability to contribute as much as I’d like given my health, but I never miss an opportunity, when I am able, to make a difference.

While September is considered a critical month  to promote education and awareness, I never cease and will continue in my efforts to raise pain awareness. As such, I thought it would be fitting to share an awesome newsletter I received the other day from Paul Gileno, Founder and President of U.S. Pain Foundation filled with great information and posed a very interesting question, of which I couldn’t help but share the newsletter and pose the same question to you: “September is Pain Awareness Month: What Does that Mean?” Please take a moment to read over the information below and let me know your thoughts.

In the words of Mr. Gileno, I ask that you join me in the fight to increase awareness and “Let’s make the 2014 September Pain Awareness Month the strongest one to date.” Join me, starting tomorrow to make it one of the strongest pain advocacy awareness months ever that will change lives. Thank you!

Be blessed! -JD

Pain Awareness Month Edition                                September 2014

To my fellow Pain Warriors and Friends: September is nearly here meaning another National Pain Awareness Month will soon be underway. This is such an important month for anyone living with pain. For thirty days, public attention will be drawn to the hardships, struggles and trials of those suffering. Our Ambassadors and other organizations strive to work more closely together to promote pain education and awareness. We work together to unite the pain community while additionally raising awareness about how pain affects us all. Pain Awareness Month essentially creates hope and compassion for those with pain, reminding them they are heard, validated and never alone.

Yet what happens on the first of October? While those invested in the epidemic of pain continue their missions to advocate, educate and empower, others sometimes lose interest in the cause. A new issue takes center media spotlight, which ends the action piece that many of us were looking to follow the progress of September from happening.

This is where YOU – the pain warrior, care champion, supportive ally – play a role. It is up to you to continue voicing your stories, sharing your worries and breaking down barriers. September gives us the boost we need to bring our concerns to the forefront. But we have to take that next step. We have to push for the funding, the research, the education and the legislative changes we wish to see. It might seem like a tedious task, but every September I feel US Pain Foundationmore optimistic that our collective voice is making an impact. That we are somehow getting closer to that moment when the topic of pain care is at the forefront of health care, and pain is not looked upon with a stigma but as a real disease.

I am thankful to the coalition of organizations who created Pain Awareness Month fourteen years ago. They had a vision to eradicate the under-treatment of pain and shed light on 100 million Americans living with chronic pain. Together, we are making headway but there is still such room for growth. That is why we need to keep pushing the envelope.

We must come together as a community and work for the common good of people with pain.

To all those out there who feel isolated and alone, remember there are many who understand your plights and are working to create your better tomorrow. It is our goal for everyone to have access to proper pain care, to have the ability to see the doctors they need, to receive appropriate treatments, and most importantly to walk this journey with you.

This month, and every other month, U.S. Pain is dedicated to lessening the suffering of pain and to help guide you to a hopeful and fulfilling life. We are in the process of revamping our current website. The updated site will hold more information, tools and resources to educate, empower and advocate for the pain community. Our goal is for it to go ‘live’ this fall. We are also working on a U.S. Pain app as well as a whole host of events, seminars and educational days for the upcoming fall and winter of 2015. It is important to us to expand our programs, and to do this, we continue to work with many community partners to have these programs for you.

Let’s make the 2014 September Pain Awareness Month the strongest one to date. Together, let’s shift perceptions, start that positive dialogue we want to see and finally obtain the answers we need for better medical advancements the field of pain care.

You are all pain warriors, and each of you inspires me. Thank you for being a part of this journey. Day by day, we are making small steps toward victory.

Wishing you all a low-pain and high-spirits day,

Paul Gileno

Founder & President, U.S. Pain Foundation

US Pain Foundation2

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Please Help Spread the Word – Fibromyalgia & Chronic Pain Conference Dallas, Texas 6/7/14

Photo credit: Treasures of Comfort http://treasuresofcomfort.com/index.html

Last week I had the pleasure to receive a pleasant comment on my blog with a small request from a young lady to help spread word of the North Texas Fibromyalgia and Chronic Pain Conference that will be held June 7, 2014.

I was touched by her request, asked that she give me a couple of days to get things in order, and promised I would do so being that I am a passionate supporter of this cause and felt someone may benefit from it. But I wasn’t sure what I could say because I didn’t know much about the conference except details we managed to view at the website that included registration, transportation, and trip planning information for those in the Dallas or surrounding areas. Additionally, I needed to have a little more background information. So we did a search and I learned some interesting, yet valuable particulars.

The conference will be held from 8:30 am to 4:00 pm, Saturday June 7, 2014 at DoubleTree by Hilton, Dallas, Texas. The conference is designed specifically for fibromyalgia and chronic pain members who will get a chance to talk with and meet others who share the same journey and learn more about alternative treatments for people in pain. It is being presented by Avazzia, designer and manufacturer of the premier handheld microcurrent device used to manage chronic and acute pain using U.S. patented technology. The device may prove to be helpful and useful for fibromyalgia and chronic pain patients that may be reading this. Please feel free to visit their website for more information.

For conference and registration information or additional assistance, please visit the Treasures of Comfort website at Fibromyalgia and Chronic Pain Conference Registration, Treasures of Comfort Facebook page, North Texas Fibromyalgia & Chronic Pain Conference or view the Fibromyalgia & Chronic Pain YouTube video.

It is always a privilege to share fibromyalgia information so that others may be aware of news, changes, or updates to make an informed decision. Therefore I kindly ask that you show your support and please help spread the word. Your support is greatly appreciated.

And as always, here’s to more pain-free days filled with laughter, joy, and praise!

Thank you! -JD

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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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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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I Won’t Give Up…Still Fighting for A Presidential Proclamation naming Every September National Pain Awareness Month!

wpid-storageemulated0DCIMCamera2014-01-25-16.56.44.jpg.jpgLast month I came across a post on Twitter from America Tonight asking the public to submit a request with the number one thing we wanted President Obama to do, noting responses may possibly air on their show the day before the State of the Union Address was scheduled to air.

I reluctantly had my daughter send an email to America Tonight’s Al Jazeera with my answer that stated, “#DearPOTUS, The number one thing I want you to do for all chronic pain sufferers across America is sign the first-ever Presidential proclamation naming every September National Pain Awareness Month, please and thank you Mr President Barack Obama.”

To my surprise I received an email from DearPotus@aljazeera.net saying, “This is great! Could you write that on a poster & take a photo of yourself holding it, so we could use it in our broadcast?” I was elated! I immediately responded asking when was the deadline and advised them I would need time since I had to have my daughter get a poster, write it up, and take a photo of me. They said I had until that following Monday before the SOTU address. So I did just that and submitted the photo. America Tonight immediately posted my picture on Twitter along with several hundred or thousand of entries and then noted “the best would appear in tomorrow’s broadcast.” I was still hopeful.

On Monday, January 27, 2014 I watched the America Tonight show to see if my photo made it to their broadcast but sadly it didn’t. I was still grateful and thankful I got the chance to add my voice even if it was not in the way I had hoped. I truly believe God has a plan and no matter how it may work out according to man, it will work out just as God plan.

I am still hopeful though because it will not stop me from continuing in my fight to secure a Presidential proclamation for a cause I am passionate about. And this is not the first time I’ve been denied. In the past four years I have made several contacts by phone, letters, and other avenues to the President’s office as well as the senator’s office advocating, to no avail. I haven’t received any answers. But I am declaring victory! God is in control. Pain sufferers unite. We will have the victory!

I learned I should take another route so I did a little research and ran across a process I should try out. Contact officials in my state and follow the government chain of command starting with the mayor, governor, and senators. I am hoping this in turn will increase my chance of having someone review and honor my request and ultimately it will become a reality in my life and the life of chronic pain sufferers everywhere, should President Obama review my request and sign the proclamation.

My family has agreed to help with sending requests to the mayor, governor, and senators of my state by mid-March and then will submit a final third written request to President Obama. One day, this too shall pass.

Please keep me in your prayers, join me, and continue in your support to aid in the fight to bring awareness to the “hidden” epidemic of pain by spreading the word. Pain is not just an individual or local problem but a “national healthcare crisis” that deserves proper recognition to increase efforts and aid healthcare professionals to take the right approach towards promoting effective treatment for chronic pain sufferers across the nation.Thank you!

I won’t give up…Still fighting for a Presidential Proclamation naming every September National Pain Awareness Month!

Be blessed!-JD

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Fibromyalgia Patients and Pain Warriors, Save the Dates 3/9/14, 3/26/14, 5/12/14!

Save the Dates!To all Fibromyalgia patients, pain warriors, caregivers, advocates, and family and friends of chronic pain sufferers across the nation, please save the dates for two important events that will occur in March and one in May 2014:

  • The U.S. Pain Foundation is hosting Take Control of Your Pain Education Seminar for chronic pain sufferers in Phoenix, Arizona March 9, 2014.
  • The United States Federal Drug Administration (FDA) is holding the Fibromyalgia Patient-Focused Drug Development Public meeting and is inviting patients to attend the meeting in person or via webcast as well as the opportunity to submit comments via online. Registration to attend the meeting will close on and must be received by March 20, 2014. You can visit Eventbrite at https://marchfibromyalgia.eventbrite.com for registration and meeting details. To submit comments, please visit http://www.regulations.gov/#!documentDetail;D=FDA-2013-N-1041-0004 , go to the Open Docket Folder and click on the blue “Comment Now!” button. The deadline to submit comments is May 26, 2014.
  • Fibromyalgia Awareness Day is May 12, 2014.

I am also happy to announce, with the help of family members, I will be participating and will be in attendance for the FDA Public Meeting via webcast 3/26/14. I registered 10/31/13 with the National Fibromyalgia & Chronic Pain Association (NFMCPA) via Eventbrite for the public meeting that was initially scheduled to occur on December 10, 2013. The meeting was canceled the same day due to inclement weather conditions closing the federal government office in the Washington, D.C. area but has been rescheduled. I am excited!

I am in the process of having my family help complete the topic questions with my comments to submit to the docket. While I will not have direct access to be a part of the patient panel because it will be made up of patients attending the meeting in person, I will have the opportunity to contribute to the discussion and possibly submit comments in real time during the meeting. It is my greatest hope that the comments I submit are reviewed during the meeting and in some way will contribute to change for Fibromyalgia patients and chronic pain sufferers across America. Please keep me in your prayers.

I urge you to please be a part of the FDA event and I strongly recommend you tell a friend or family member of the meeting as well as share with them the opportunity to submit comments even if they are not able to attend. Every voice helps and needs to be heard.

I believe this is a great opportunity to express to the FDA how fibromyalgia impact the lives of those living with it and what we as patients believe should be considered through our participation and submission of our  comments to the very agency that regulate and approves of medications developed for Fibromyalgia. This in turn may increase continuity of care efforts and may help to determine the right approach to effective treatment.

It is also a chance in a lifetime for our voices to be heard on a federal level and will give us an opportunity to share our perspective in agreement with what the FDA notes that will allow us “to provide input on symptoms that matter most to patients and on current approaches to treating Fibromyalgia. The FDA is interested in obtaining a better understanding of fibromyalgia patients’ perspective on the severity of the disease and the available therapies used to treat fibromyalgia and its symptoms.”

As for the U.S. Pain Foundation seminar, unfortunately I will not be able to attend because I will be out of town visiting my mother. I’m saddened by this because it would have been my very first opportunity to be a part of an event with the organization as a pain advocate. As well as show off the pain warrior bracelet I received when I joined last year to advocate for pain sufferers.

While I may not be able to attend the local event, I do feel it is important for others to be in attendance so if you live in the Phoenix area, please visit the U.S. Pain website to register at http://events.r20.constantcontact.com/register/event?llr=c9z5umdab&oeidk=a07e8szc4tp3e25f308.

Although my advocacy efforts are minimal, I take great delight in being able to advocate and contribute no matter what capacity it is in, therefore, it is with sincere efforts that I encourage you to save the dates, March 9, 2014, March 26, 2014, and May 12, 2014 to afford you and others the opportunity to participate in each upcoming event.

Thank you for staying with me on this journey!

-JD

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“But You Don’t Look Sick”

wpid-textgram_1386924105.pngWhen you’re hurting on the inside but dressed nicely and look good on the outside. “But you don’t look sick.” What people don’t know, on the outside looks can be deceiving.

They don’t need to know you’re sick. Keep your head up. Smile. Dress well. All that matters; God is a healer. He knows you’re sick.

“But you don’t look sick.”

Be blessed! -JD

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In Support of September Pain Awareness Month

In support of a cause I am truly passionate about for those who suffer with ongoing chronic pain, as a pain advocate, I decided to dedicate this post today to lend my voice in honor of September Pain Awareness Month.

Having lived with chronic pain for the past eleven years and being diagnosed with various conditions, I became an  advocate with various chronic pain association organizations to help raise awareness. Although my efforts are limited due to limitations and challenges I face, I do what I can when I can to make a difference.

When I became diagnosed with Fibromyalgia in 2009, with the help of my family,  the first step in my journey  as a pain advocate began with submission of my story “Joy” to the APF Action Network. The story can also be read at http://action.painfoundation.org/site/PageNavigator/Voices_of_Pain.

To raise awareness about the need for effective pain care in response to the American Pain Foundation’s  (APF) “If I Lived in a World with Less Pain, I Could…” campaign to SECURE A FIRST-EVER PRESIDENTIAL PROCLAMATION OFFICIALLY NAMING EVERY SEPTEMBER NATIONAL PAIN AWARENESS MONTH, my family helped create this video “If I Lived in a World with Less Pain, I Could…” to share my voice as well as spread the word to bring awareness to what I believe is such an important issue in the lives of those who live with pain.

The video represents a poem of my message to PRESIDENT OBAMA of what MY WORLD WITH LESS PAIN would be like. It gives me an opportunity to make a difference in the lives of others as I work to bring national awareness to the “hidden” epidemic of pain (APF) so that those who suffer with pain will have a right to effective care and treatment; because “pain” is not just an individual or local problem. It is a national healthcare crisis. It does not only affect pain sufferers but it affects families, friends, associates and anyone who is connected to its world. Even though it may not directly affect every individual, the physical, financial and emotional affects can be devastating to the pain sufferer and the families of those who will ultimately suffer. But with your help, we all can make a difference.

APF ceased operation last year and is no longer active, but I am still campaigning and fighting for a presidential proclamation.

Please join me in support of this cause and spread the word DURING THE MONTH OF SEPTEMBER or UNTIL A PRESIDENTIAL PROCLAMATION IS SECURED by asking others to spread the word on Twitter, Facebook, Tumblr, or any other social media. Your support would be greatly appreciated! -JD

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Look For God In The Midst Of Your Pain

The Lord is My LightI find that as humans, we all are afflicted with something that will bring pain in some way where we will suffer be it physical, spiritual, or mental, acute, chronic, temporary, permanent, incurable, or curable.

Pain comes in many forms and can be experienced in the loss of a loved one. The effects of grief may cause failure in our ability to overcome. It can come from an injury, an illness, or a health condition where symptoms may never cease. Or from a heart that has been broken into pieces. There’s no getting around it. We are not exempt. However, some of us will give up while going through and hold contempt. Or some of us will persevere and relent, when experiencing a painful event. It’s all in who we know and whose we are. It will depend on our relationship with God.

Much like Jesus, who suffered both physically and spiritually, yet persevered. He still served.  His suffering was nothing in comparison to the price he paid when he carried our sins and died to pay the penalty for them. Yet he served. He didn’t let that stop him from fulfilling God’s plan.

One of my greatest passions is being a voice and advocating for people in pain. Yet one of the hardest challenges I face is being able to lend my efforts as I would like to. Oftentimes, giving up and losing the perseverance to stand. As such what I’ve found as a silent advocate is my message sometimes fall on deaf ears.

I know you’re saying, “It sounds like an oxymoron to be a ‘silent advocate.’” And when I look at it, it does. But what it means is, in my heart I advocate while at the same time my family helps with efforts to lend my voice that sometimes is bare minimum in comparison to what I see in most people who advocate for a cause. This is primarily because of my limitations but I still fight when I can as I can.

Did you know there are 116 million American adults that suffer from chronic pain (June 2011 IOM report), of which I am one of them.

Throughout this particular season in my life, I have encountered some of the strongest people whose plight is acutely worse than mine but I’ve witnessed their drive and tenacity to reach their God-given destiny. They’ve beaten the odds and lived to tell their story. As well as found success in spite of their situation. Sadly, I was not one of those people.

After a 9 ½ year long battle with unresolved pain issues taking its toll on me, I had come to the conclusion that my life was over. At the time, I was ready to begin a new journey after finishing grad school but found my life changed in a matter of a split second. I thought it was shattered because I had hopes and dreams and found myself giving up all because of one dramatic change. The devil is a LIAR! My God reigns!

It was in this instant I woke up to my reality as I said to God, “I know this life is not what you have in mind for me. I know this is not the life you promised would be.” I cried out to him, “Lord I know this season I’m in is only temporary. You know the burdens I carry. I know I am not here to live a substandard life. I know in my heart you have a better plan for my life. I ask that you show me what it is I can do, to make a difference and glorify you.”

I told him, “I know there are people in this world in much worse shape than I, who have stood the test of time. And if they can do it so can I. Use me Lord to do thy will. Not based on my circumstances but because of my circumstances let your will be done.”

As I turned over and mediated on my petition to God, I fell asleep and hours later, woke up with a strange urge to do something beyond my understanding not knowing how it would be accomplished. All I know is God revealed it to me and told me the pity party was over. He said, “The time has come as you asked to be used. Rejoice. This is Good News.”

“Paul tells us that in the future we will become, but until then we must overcome. This means we will experience difficulties that help us grow. We rejoice in suffering not because we like pain or deny its tragedy, but because we know God is using life’s difficulties and Satan’s attacks build our character.”

Romans 5:3-5 “Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; 4 perseverance, character; and character, hope. 5 And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.”

That same day I gathered all the strength I could and discussed with my sister the story I later shared with American Pain Foundation (APF) three years ago in submission of my story after completing an advocacy survey. I told my sister that after we submitted my “Share Your Story” God had given me a revelation. I wanted to help people in pain even though I wasn’t sure how it would be accomplished. My sister assured me it could happen with God and family as my source of support.

With the help of my family we took the first step as they helped put together my story “Joy” and submitted it to APF Action Network. A few weeks later I received news that my story had been accepted and would be featured on their Action Network site under Voices of People with Pain. This in turn set the foundation of my advocacy efforts. The story can also be read at http://action.painfoundation.org/site/PageNavigator/Voices_of_Pain

I was overjoyed and excited in spite of strife. God changed my life. He set the foundation for greater things to come even when I had given up and thought I was done. This is where it all started although the organization ceased last year, this is where I still am in my commitment to serve Him, as I advocate for the rights of people in pain. I am still fighting for the proclamation.

And it didn’t stop there. God showed me what great courage and perseverance will do even in times of despair. Approximately two years later I learned APF was holding a campaign called “If I Lived in a World with Less Pain, I Could…” during September Pain Awareness Month. In an effort to secure a first-ever presidential proclamation proclaiming September National Pain Awareness Month, applicants were given the choice to submit a short story or video of what their life would be like if they lived in a world with less pain.

I thought, “This would be the greatest opportunity to share with others my testimony. Not literally, but what I believe we as pain sufferers experience and are afraid to speak. So, I immediately went to God. I told him “I really want to do this. I really would like to be a voice, in way that would truly make a difference. Please God, I know you’re listening. I ask for discernment and wisdom be it your will that you may guide me to make the right decision that I may fulfill…your purpose.”

I called my sister again and told her what I desired to do but I was waiting on God for confirmation that would lead me in whatever he willed I do. God sent the answer by the time she arrived home and with the help of my family, September 2011 they created this video. I was elated. I only wanted to be a voice. God helped me overcome barriers. In his still voice, he said to me, “This will be your voice.”

The video represented my message to PRESIDENT OBAMA of what MY WORLD WITH LESS PAIN would be like. I felt it was an opportunity to bring national awareness to the “hidden” epidemic of pain (APF) so that those who suffer with pain will have a right to effective care and treatment; because “pain” is not just an individual or local problem.

It is a national healthcare crisis. It does not only affect pain sufferers but it affects families, friends, associates and anyone who is connected to its world. Even though it may not directly affect every individual; the physical, financial and emotional affects can be devastating to the pain sufferer and the families of those who will ultimately suffer. I believed with the help of a nation, we all could make a difference.

Within a matter of weeks, again to my surprise, APF chose my video the second week of the campaign and featured it on their Facebook page. I thought, “This is all God.” He is using me in spite of me to help others who suffer so their voices can be heard.

I thanked him over and over again. I know he sent this new journey in spite of my pain. I truly believe this will be the cornerstone of the new road I will travel in this “new” journey of my life. As I become a voice of reason and a voice of hope for many who suffer from pain of any type.

I say all these things to say this: Although it has been a long and hard journey towards the road to recovery, I wanted to shout to the world what God did for me. He set my soul free. I professed all my troubles to God. I spent time in prayer when things seemed hard. I surrendered my will to him. I prayed and asked Him. Much like the same as Jesus said to him, “Father, if you are willing, take this cup from me; yet not my will, but yours be done.”

I will follow your example Jesus. I will persevere. I will sustain. I will pray to the Father through my trials and pain. He did it for me. He can do it for you too. Here’s my suggestion for you. Tell me what would you do?

What you say? Do you believe Jesus will make a way? Do you believe He will take all your pain away? Do you believe he will set you free? Free from a life of pain, worry, and misery. What do you believe?

Do you believe God orchestrates things with your best interest at heart? I do. His Word I will never depart. For it is this I believe. I will receive all that God has promised me. I will not get weary in well-doing. I will run and not walk. God will give me the desires of my heart.

This is my platform. God gave it to me. I will use it to encourage others to stay strong in spite of me. In spite of the diagnosis, condition, or symptoms that come. We can be the one that God will use to inspire and help someone.

Look for God in the midst of your pain. God doesn’t change. He is the same. Yesterday, today, and forever more; he reigns. We all can make a difference in the lives of others if only we believe! We can change the world if only we continue in our efforts to make a difference. And we can live life to its fullest in support of others when fighting to bring awareness that they may persevere to the next level. Be blessed! –JD

1 Peter 2:21 “For to this you were called, because Christ also suffered for us, leaving us an example, that you should follow His steps:”

If I Could...I Would

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