May is not over yet. Happy Fibromyalgia Awareness Month to all my Fibro Warriors!

Please forgive me for being late with my post to celebrate May is Fibromyalgia Awareness Month. I am thankful the month is not over and I haven’t missed it. As a person who suffers daily with symptoms associated with this “invisible disease” and consider myself a “silent” advocate and warrior, I would be remiss not to celebrate and inspire my fellow Fibromyalgia warriors. Happy Fibromyalgia Awareness Month!

This year I decided to do things a little different and rather than just celebrating the month of May in honor of Fibromyalgia, I want to share information on what is Fibromyalgia and its symptoms to educate others and those who wonder why we celebrate Fibromyalgia Awareness Month. In a small yet meaningful way, it is an opportunity to enlighten others on what we as fibro warriors go through every day when dealing with its symptoms. I promise I will be brief. *smile*

Fibromyalgia Awareness Month to me, is so important because it is considered one of the most seriously misunderstood diseases. Why? Glad you asked. Because it can be very difficult to explain why many sufferers, including men and women, do not “look sick” but are, and how it affects us when dealing with constant chronic pain, fatigue, and the fibro fog.

So, what is fibromyalgia? Glad you asked, again. The list can be exhaustive so I didn’t list everything but you’re welcome to visit the links for more information. Here’s a portion of a broad summary of the symptoms by The Mayo Clinic taken from http://www.fibromyalgiatreating.com/you-have-fibromyalgia/ and Lyrica.com taken from https://www.lyrica.com/fibromyalgia/managing-fibromyalgia-pain which include:

Widespread pain – this is typically characterized by a dull ache that lasts for at least three months. Fatigue – If a patient with fibromyalgia can sleep at night (insomnia is very common), they frequently wake during sleeping hours due to pain. No sleep or poor sleep causes fatigue during waking hours and can make it difficult to function and focus. “Fibro fog” – Cognitive impairments such as difficulty concentrating on mental tasks, feeling “hazy,” or the inability to think clearly. Other problems – Anxiety, depression, migraine headaches, and conditions that fall into the “other” category that include abdominal cramping, burning sensations either on the skin or from within, IBS (irritable bowel syndrome), intense itching, muscle and joint pain, as well as hypersensitivity to pain, medications, cold weather, foods, physical touch, and more.

Fibromyalgia affects more than 5 million women and men in the United States (lyrica.com). And although it is a so-called “Invisible disease,” the pain is real and is not all in our heads. Sharing a kind word, spreading love, or checking on a friend or loved one who suffers with this debilitating disease will go a long way. Be intentional. Make a difference.

Now for the fun part, if you have a moment please share your thoughts, in love, in the comments below in honor of someone you may know who suffers with fibromyalgia or say “hello” to your fellow fibro warrior(s) and let them know you are here for them.

Happy Fibromyalgia Awareness Day!

Be blessed! – JD

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

Photo credit: http://www.joaynn510.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 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

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

I’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

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

Fibromyalgia Awareness Day – May 12, 2014

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

Fibromyalgia 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

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

To 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?

To My Fellow Fibromyalgia Friends, Associates, and Loved Ones

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

Fibromyalgia and Pain Warriors…This One is for You!

No matter how much pain I’m in, I will fight to the end! I am a FIBROMYALGIA WARRIOR. I’m gonna win this fight no matter how much pain I’m in. I may have Fibromyalgia but it don’t have me. How about you? Are you with me? We got the victory!

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

Last month I came across a post on Twitter from America Tonight asking the public to submit a #DearPOTUS 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

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

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

Dear NaNoWriMo and NaBloPoMo, Can There Be Such a Thing as NaNoWriDisMo and NaBloPoDisMo?

I just learned from a BlogHer email that NaBloPoMo begins January 1, 2014 and the race is on for numerous people to participate in the upcoming NaBloPoMo event.

I thought, how fitting the timing since I was in the process of blogging about a small change I would like to see with NaNoWriMo and NaBloPoMo for those disabled but would like to be a part of this glorious event in the near future. As well as those who may have some difficulty participating given the requirements and writing challenges.

I am a person who has a compassion for all no matter what one suffers with. Granted it was not until after I became diagnosed with chronic pain syndrome after suffering with hand and elbow conditions, Fibromyalgia, and other conditions that I developed a greater compassion for those in pain and those who have become disabled as a result of their diagnosis. I empathize with ones who are limited in their capacity to function as they were accustomed to and know what it is like to face challenges or obstacles when desiring to be a part of the norm.

When I first began my blog, I didn’t realize the amount of time, effort, physical strength, and writing that would be required to maintain the blog. While I welcomed comments, sometimes it would take days, weeks, or longer periods for my response because of limitations with my hands but I no doubt would respond as time permitted. My writing also averaged minimally compared to other bloggers because of days that prevented me from posting due to excessively flared symptoms that kept me bed-ridden. But all I knew when my children introduced me to blogging and agreed to help me to encourage me and take me out of my comfort zone, I wanted nothing more than to connect with others and do something different even though my body was saying no.

As such, when I first heard of National Novel Writing Month (NaNoWriMo) I did not have any idea what was the world of NaNoWriting. As November approached, mid-way through my joining social media over a year ago, a friend of mine named Sezoni Whitfield, whom I met on social media who support writers in their projects and conduct writer interviews via WritersKaboodle on Twitter introduced me to the idea and asked if I were interested in participating.

I told her I had never heard of it, and given my limitations with my hands and elbows along with the pain and challenges I faced daily with what I considered severe symptoms of Fibromyalgia coupled with chronic pain, there was no way on earth I could ever begin to write every day to complete 50,000 words in one month. Even though I have managed to write a memoir that took me years to compile and is in its final stage awaiting final editing review, it in no way can compare to having to post every day and meet the 50,000 word challenge.

But then I had an afterthought and in response to that challenge, I decided to take a look at my blog posts and do a word count from November last month as well as posts from November 2012 and this is what my family and I came up with. In 11/2013 approximately 29,150 words were written and in 11/2012 approximately 38,843 words were written not towards a novel but just my thoughts on my blog.

Now, if I were to go and count I’m sure the words I wrote in my memoir would exceed 50,000 yet it was not done in a month as would be required if I chose to participate with NaNoWriMo in November. Therefore, prompting my idea for change.

I joined BlogHer a short time later in November and saw National Blog Posting Month (NaBlogPoMo). I decided to further research and after gaining insight I had a strong desire to participate but knew I couldn’t meet the challenge. A year went by with not much changing with my physical limitations but I was still interested in the possibility of participating. It was not until last month when I received an email from BlogHer noting the end of NaBloPoMo that again I wished I could have been a part of it. Sadly I couldn’t because the challenge was too great.

So I started thinking, what if NaNo (Writing Month) was to include a writing challenge in November for people with disabilities and gave them similar requirements that included 30 days with a lower word count of approximately 39,000 – 40,000 words. With the hope of writing something that doesn’t necessarily need to be a novel but can be smaller like an inspirational journal for publishing (NaNoWriMo). Additionally, the same requirement would apply for NaBlo (Posting Month) with the exception of creating inspirational blog posts for thirty days instead of writings towards a novel. And each entity called it National Novel Writing Disability Month (NaNoWriDisMo) or National Blog Post Disability Month (NaBloPoDisMo).

Granted, I know there will be a lot of variables to consider when making such a change and given the fact some people do not wish to be placed in a certain category, for me I feel those with disabilities would welcome the idea who face challenges but desire to be included. And it possibly may motivate and inspire them to meet the challenge along with others who participate in this worldwide event.

I am not one to view things in a light that would place labels on others nor do I wish it to be viewed this way but my hope is for others to see it as inclusiveness that would give equal accessibility to those we don’t know who may feel inadequate or incapable of participating and choose not to because of a disability, but desire to do so. I believe it would be exhilarating, freeing, empowering, and amazing!

Whew….now that I’ve gotten that off my chest, I feel better. And remember, these are just my thoughts. Thanks for listening. Be blessed! -JD

Signed,

Me
Future
NaNoWriDisMo and
NaBloPoDisMo member

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“But You Don’t Look Sick”

When 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

Simple Words of Wisdom

After suffering a significant number of headaches in addition to acute flare ups of Fibromyalgia symptoms the past few weeks, today is the first day in a long time I’ve managed to collect my thoughts with a few random sayings and feel well enough to transfer a few words of wisdom from my head to the place you are now reading in order to create a post. Each saying is not in any particular order and came off the top of my head. Thought I’d share before I lay down my head. Enjoy!

New you. New attitude. Make it that when people see you they’re confused. Throw them off when you react differently; they will see the new you and no longer see the “old me.”

Stop relying on people to embrace or validate you. They may say or do things to hurt you. You’re beautiful in God’s eyes. His word is truth. Love those who hate you. Bless those who curse you. Be good to those who despise you. For those who don’t like you say, “God bless you.” No matter how people may treat you, God will take care of you. They’re not in control of your destiny. With God on your side, you win.

As seasons change, is the same reason God allows seasons to change. God uses circumstances to speak to you. The devil is a liar! God got you! Lot’s wife looked back when told not to and turned to a pillar of salt. Don’t look back on the past only to kill your future. Press forward.

Be careful who you surround yourself with. The devil comes in sheep’s clothing. Everybody that’s praying with you ain’t praying for you. Satan will find his way into any situation to gain victory. You don’t have to wait until the battle is over to shout. With God fighting your battles, you’ve got the victory!

Simple words of wisdom…

Be blessed! –JD

Ephesians 4:22-24 “You were taught, with regard to your former way of life, to put off your old self, which is being corrupted by its deceitful desires; ²³ to be made new in the attitude of your minds; ²⁴ and to put on the new self, created to be like God in true righteousness and holiness.” (NIV)

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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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From the desk of Karen Richards: Recap of Dr Oz Show on Fibromyalgia

This past Tuesday (July 23, 2013) the Dr. Oz Show featured a segment on fibromyalgia. If you missed it, you can watch the four-part video series watch the four-part video series on Dr. Oz’s Website. The title of the episode was “The Disease Doctors Miss Most: Fibromyalgia.” On television, the FM segment lasted for 30 minutes, including commercials, which is actually a pretty long segment for that show.

Personally, I had mixed feelings about the program. It accomplished three things very well.

First, they used the word “disease” for fibromyalgia which immediately gives it more credibility. Then Dr. Oz and his guests, Dr. Jennifer Caudle and Dr. Sean Mackey, made it clear that FM is a very real physical illness with serious, life-altering symptoms.

Dr. Oz did a good visual demonstration that explained how something in our brains causes the pain signals to be turned on high, which results in excruciating pain throughout our bodies. Hopefully this helps people who have loved ones with FM to have a better understanding of what they are experiencing.

They urged people who have the symptoms of FM not to allow their doctors to brush them off but to keep looking until they find a doctor who takes them seriously and tries to help them.

Three things in the program surprised me.

Although Dr. Oz mentioned very quickly in passing that there are three FDA-approved drugs for treating FM, he did not discuss or even name any of them; nor did any of the doctors mention using any kind of medication as a treatment option.

The only treatment option that was focused on at all was osteopathic manipulation, which is something we rarely hear about in relation to FM. They had a doctor there demonstrating this technique on an FM patient.

Dr. Oz asked Dr. Caudle whether fibromyalgia is life-threatening. She responded “yes” but then went on to clarify that FM is not deadly but it does severely affect our quality of life. (I wasn’t surprised that FM threatens our quality of life – just that she answered “yes” to the life-threatening question.)

There was one statement in the show that I disagree with. Dr. Oz stated that it takes an average of three doctor visits to get a proper diagnosis of fibromyalgia. In my experience, most of us would have been thrilled to get a diagnosis in just three doctor visits! Thankfully, most people are now getting diagnosed much faster than the seven years it took me, but I still often hear of it taking many months and even a couple of years to get an accurate diagnosis. Perhaps he meant visiting three different doctors, but that’s not what he said; he clearly said “it takes an average of three doctor visits to get a proper diagnosis.”

If you’ve had FM for awhile, you probably didn’t learn anything new from this program. And it certainly didn’t fulfill the promise in the promo that you would “Learn about the latest treatments and discoveries that could heal you.” From that aspect, it was disappointing.

All things considered, though, I think it was good show. The reason I say that is that the Dr. Oz Show is seen by millions of people and his words have great impact. (When he mentions a product, stores sell out overnight.) In that respect, I think we’ll see that the show went a long way to help increase the understanding and acceptance of fibromyalgia, which will ultimately benefit all of us.

Karen Richards via http://www.healthcentral.com/chronic-pain/c/5949/162047/recap-show-fibromyalgia?ic=2602

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Please share! Your support is greatly appreciated. -JD

From the desk of Karen Richards: Dr. Oz Show About Fibromyalgia – Tuesday, July 23

Fibromyalgia Awareness (Photo credit: Kindreds Page)

The Dr. Oz Show, scheduled to be broadcast this Tuesday, July 23, 2013, is going to feature information about fibromyalgia.

The title of the program is “The Disease Doctors Miss Most: Fibromyalgia” and the description of the episode says, “Are you always exhausted and in constant pain? Learn about the latest treatments and discoveries that could heal you.”

You can watch a brief promotion video of the show here: Dr. Oz promo http://www.doctoroz.com/episode/disease-doctors-miss-most-fibromyalgia

I have my DVR set up to record the show and I’m looking forward to hearing what he has to say about fibromyalgia and potential treatments.

Karen Richards via http://www.healthcentral.com/chronic-pain/c/5949/161946/dr-fibromyalgia-tuesday

Please share! -JD

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Niagara Falls Lit Up for Fibromyalgia Awareness by Karen Lee Richards

By Karen Lee Richards, Health Guide Saturday, May 25, 2013

This year on the evening of May 12 – Awareness Day for several neuro-immune illnesses – Niagara Falls was lit up for 15 minutes each in the awareness colors of three of those illnesses: fibromyalgia, ME/CFS (chronic fatigue syndrome) and multiple chemical sensitivities.

If you weren’t able to see that event live on the Niagara Falls Webcam, here are the still shots I was able to capture.

Purple for Fibromyalgia Awareness:

Blue for ME/CFS Awareness:

Green for Multiple Chemical Sensitivities Awareness:

It was exciting to see this national landmark, treasured by both the U.S. and Canada, boldly displaying our awareness colors.

Niagara Falls Lit Up for Fibromyalgia Awareness
(www.Healthcentral.com)

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National Fibromyalgia And Chronic Pain Association: Pledge to Care

May is National Fibromyalgia Awareness Month. Join in support of this cause to raise awareness and “Make It Visible.”

Show your support by taking the National Fibromyalgia & Chronic Pain Association’s (NfmCPA) Fibromyalgia Pledge to Care.

Click on the National Fibromyalgia & Chronic Pain Association link below and make your Pledge to Care today.

NFMCPA’S Pledge to Care

Your support will be greatly appreciated!

Thanks! -JD

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Fibromyalgia Awareness Day is Sunday May 12, 2013!

Photo credit: http://www.joaynn510.wordpress.com

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.

Photo credit:

https://www.facebook.com/fibroawarenesspage

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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