Tag Archives: NFMCPA

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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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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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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To My Fellow Fibromyalgia Friends, Associates, and Loved Ones

To My Fellow Fibromyalgia Friends, Associates,Today I was blessed to participate and be a part of what I believe was a crucial and very important webcast meeting hosted by the United States Federal Drug Administration (FDA) for Fibromyalgia patients. It was ground breaking. What an exhilarating experience!

The FDA Fibromyalgia Patient-Focused Drug Development discussion topics focused on disease symptoms and daily impact that matter to the patient and the patient’s perspective in current approaches to treating fibromyalgia. It was an awful lot of information to take in at one time and the response was overwhelming, but it was certainly needed.

For me, as a Fibromyalgia patient, it was a very emotional meeting where at times I cried as I listened to and heard some of the most powerful, riveting testimonies of patients who suffer with Fibromyalgia and chronic pain. One patient panelist said to the FDA, “Thank you for listening to us. People don’t listen.” I cried. I realized nothing could ever compare to what I am going through as each person exposed themselves to the world and gave a personal, sometimes graphic, in-depth account of their experiences and what they have gone through. As well as listed symptoms I could have never imagine existed.

The best part of this meeting was having the ability to be informed about Fibromyalgia in its entirety and gain a greater awareness of the state of my own denial as I heard countless stories of symptoms that were similar if not exactly like mine that I lived in denial of. Understanding, it was not all in my head. This is really what I suffer with and now I am clearer on what’s causing it; thankful.

While today’s meeting was 4 hours long and my body felt every bit of its effect with swollen feet, neck, and hands, a really bad headache, and my anxiety that was shot out the window, it was well worth it. I would not have missed it for the world!

The facilitators and panelists that included patients as well as Presidents and Executive members of some well-known pain organizations did an amazing job! I was thrilled to hear and see Jan Chambers, President of National Fibromyalgia & Chronic Pain Association and Gwenn Herman, Executive Director of Pain Connection as panelists of the second topic discussion. The meeting went well and according to schedule.

The one thing that was disappointing and troubled me most is that there was no news mention of this meeting or announcement by any major television stations or across social media with the exception of some pain organizations. Had I not heard about the meeting from National Fibromyalgia & Chronic Pain Association (NFMCPA) months ago, I probably would not have known about it nor would I have had the chance to be a participant. This saddens me because I believe events such as this is newsworthy and deserves the attention it clearly did not get today. Hopefully, in the future I pray something changes so that more people will have the chance for involvement and given the opportunity to be a part of change.

Overall, I believe it was a very productive meeting and I look forward to the results. There will be a transcript available in a few weeks of which I will keep an eye out for and will either share a link or the actual transcript for those who wish to view information from the entire meeting.

Today, I felt like I belonged even if I was not there physically. It meant the world to me. I am truly grateful. I thank God for blessing me with enough strength to make it through the entire meeting. It was my first meeting via webcast and definitely will not be my last, give or take some adjustments I will need to make in the future to accommodate for the pain and discomfort I endured as a result. I do hope my contribution and input today along with my comments my family helped submit two days prior will make a difference in the lives of many who suffer with this debilitating disease.

To the FDA and all of the patients, caregivers, medical professionals, organizations and anyone who attended either in person or via webcast, on behalf of Fibromyalgia patients across the world, I thank you!

Until we meet again …. I pray you have more pain-free days filled with laughter, joy, and praise!

Be blessed! –JD

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Fibromyalgia Awareness Day is Sunday May 12, 2013!

I couldn’t help but step outside of my comfort zone of what I normally post and share a “Save The Date” post to acknowledge a cause I am very passionate about to bring awareness.

We all know that Sunday May 12th is Mother’s Day but what some may not be aware of is it is also Fibromyalgia Awareness Day.

When I saw this photo taken from Fibromyalgia Awareness’s Facebook page, it struck me and its caption totally captured my full attention when I read these words, “Things are not as they seem. I may look great but right now even my hair & clothes hurt. Invisible, but Present.” I couldn’t help but share not only the photo but briefly share information regarding the day and the reason for the cause.

I took the liberty of posting an article we stumbled upon written by Karen Lee Richards, Co-founder of the National Fibromyalgia Assn. that I believe will be extremely helpful for those suffering with this condition. I also believe it will help to solidify my goal to promote awareness, attention, and involvement in light of this cause so that others may have the opportunity to participate in Awareness Day. Please see the excerpt I’ve included below from the following link: (http://www.healthcentral.com/chronic-pain/c/5949/160652/fibromyalgia-awareness ).

“Whether you’re one individual person who wants to make your voice heard, a large group sponsoring a city-wide walk to raise funds for FM research, or anything in between, the NFMCPA can provide you with a FREE Fibromyalgia Awareness Day event kit to help you accomplish your goal. For more information or to order an event kit, visit the NFMCPA’s Awareness Day 2013 Web page.”

Fibromyalgia Syndrome (FMS) is a condition that is greatly misunderstood and misdiagnosed. It is complex and has numerous symptoms associated with the condition. Commonly referred to as an “invisible disability” largely due to a wide range of symptoms that are not easily detected on the surface, there are up to 10 million Americans who suffer with this condition http://www.fmaware.org/PageServerc145.html. I am one of them.

Although it is recognized around the world, it is commonly ignored and in most cases many patients do not receive proper treatment or support from medical professionals, family and/or friends. As such, I believe it is imperative we come together as a nation to take this seriously by increasing efforts to raise awareness in the hopes of finding a solution.

Too often doctors choose to ignore or recognize this as a valid condition and will not support the fact that it even exist. However, FMS affects people of all ages, race, and sex. And sadly, many are in so much pain they feel like getting out of their own skin they don’t want to be in.

There is a tremendous amount of physical and psychological strain where many have lost jobs and have become disabled as a result of it. There are some who will experience depression and social isolation. The impact it has on one’s life can bring hopelessness, despair, and devastation. But there is still hope. We can make a difference.

If you or anyone you know have been diagnosed with Fibromyalgia, please understand you are not alone. Nor is it all in your head or you are “imagining things” even when your symptoms don’t make sense. It’s real. The symptoms do exist. I know. I am one of those people.

My hope is that one day the medical community comes to recognize and fully understand this terrible, debilitating condition in the hopes a cure may be found.

“Save the date” May 12, 2013. And please, feel free to share. Your support is greatly appreciated. Thanks! -JD

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