The Dream #SickLivesMatter

After sharing the original Sick Lives Matter, I’ve been surprised and grateful for the response of the piece! However in response, some said, it’s too late for change. Some responded that we are too far down this path of patient neglect in healthcare, and there is no returning from it now. But I believe it is just the right time for us to rise up. I’m not alone either, with online patient forums like Patients Not Addicts gathering to influence legislation in Washington DC, advocacy groups like Give Pain a Voice, pain organizations working to change the stigma of pain patients, and so many private individuals sharing their stories wherever the universe allows, we ARE in the middle of a revolution. Are you part of it?

How can we rise up when so many of us can’t even work? How are we supposed to change policy when doctors and family don’t seem to listen? How can we make an impact on the future when many of us are struggling to care for ourselves? These are the reasons we HAVE to do something about it.

Consider cancer patients. In the last 10-15 years, the treatment of cancer has turned around because cancer patients joined together and created a movement. Everyone knows Susan G. Komen represents Breast Cancer Awareness because hard working cancer patients were able to get big organizations to stand behind their cause. Years ago, minorities with cancer were being ignored, rare cancers were going undetected, and people were terrified of finding out they could have any form of cancer because there were so few options- and you were likely too late anyway. Now, we have cancer treatment centers popping up all over the country, treatments that are actually successful at sending cancer into remission, and celebrities who bravely share their cancer experiences with the public.

Consider HIV/AIDS. As recently as 15 years ago, HIV was still a death sentence. Celebrities may have been wearing red ribbons, but people were still dying so quickly, suffering in silence, and had little recourse. Not only did society brush off the disease as a punishment- so did healthcare professionals (#STIGMA). Now, not only is there awareness, there is a culture of S.T.D. prevention and regular testing. When the worst happens, and someone is diagnosed, life is not over, people are living long lives because they have treatment and accessible management. Educated HIV doctors aren’t rare, and medication is becoming more affordable (although there is still a ways to go in regard to RX coverage).

HIV patients knew something about being brushed under the rug of society and healthcare, and paying for it with their lives. They changed the game by telling their personal stories so that those who tried could not look away! They joined together for a united cause, and chronic illness survivors can look to their bravery for inspiration.

I dream of emergency rooms where doctors and nurses treat chronic pain patient’s emergencies as high priority as everyone else’s. I see a future of chronic disease treatment centers around the country. I envision home visit physicians covered by insurance. I imagine the homebound and bedbound having access to quality patient care and mental health care from home, covered by insurance. I pray for research facilities searching for a vaccine to end degenerative neurological pain diseases. I see a world in which sudden deaths from unmanaged pain, and suicides from under-managed pain are a heartbreaking thing of the past. Is under-treated chronic illness a sign of the end times we are meant to accept with apathy, or is there something we can do from our sick beds and wheelchairs to make a change? We can be the ones who flipped the script for future chronic patients, young and old. This can be the moment you decided to take a stand. What is your dream?

Your life matters. Your story matters. Your voice matters.

#SickLivesMatter

To share your story or to learn how you can get involved in advocacy online, email abodyofhope@inbox.com

 

How to Write a Letter to the CDC

PAIN PATIENTS, WE HAVE ONLY 10 MORE DAYS!

Through January 13th, the CDC will be accepting comments from pain patients, caregivers, and family members regarding opioid pain management of adults before issuing the proposed prescribing restrictions.

If you are a chronic pain patient:

!!!YOU ARE THE BEST PERSON FOR THIS JOB!!!

I understand how intimidating this letter feels, and you might think there are better writers than you out there. But please remember, no one has YOUR STORY! Or your voice! Or your experience! We need as many people as possible to help the people at the CDC understand the necessity of pain medication (and good pain management physicians) for our quality of life and functioning.

Personally, I have learned that invasive procedures have proved to make my condition worse, and pain medication management along with what people consider “alternative medicine” or low impact treatment, have been my best options for living. What is your story? How do pain medications play a role in your life? How do they keep you functioning…or living?

I am including a packet below that should help you compose and send your letter, with the info you need to know.

***After you send your letter to the CDC, we would love to share it at Living with RSD on Facebook also. Please send it in a private message and we will repost it, with your name or anonymously.***

Thank you so much for being an advocate for all of us and working together with the pain community! This a historic. We have a chance to make a huge impact! Thank you so much!

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Letter to the CDC

    Due January 13^th

-IMPORTANT: you MUST list the Docket Number at the top of your document:

               – Docket ID: CDC-2015-0112

-Compose your letter in Word so you can see how many characters you are using

-click “Review” at the top of the screen in Word, and select “Word Count.” It will track your Characters. Stay within 5,000 Characters per CDC guidelines for comments.

-Using Word allows you to use Spellcheck before sending.

-Save your document regularly to avoid losing all of your great work.

-List your job, former job, current organizations you are involved with, and volunteer work you do (in person or online)

-If you list your conditions, remember that the CDC does not recognize all conditions and diseases (such as CRPS/RSD) so include the McGill Pain Index and/or NIH definition for your condition.

-When you are pleased with your letter, copy your document and paste in the comment section here: http://www.regulations.gov/#!submitComment;D=CDC-2015-0112-0001

-Or Print and mail your letter to:

National Center for Injury Prevention and Control, Centers for Disease Control and Prevention

DOCKET #CDC-2015-0112

4770 Buford Highway N.E., Mailstop F-63,

Atlanta, GA, 30341

-Here, you can read other patient letters to the CDC before submitting:  http://www.regulations.gov/#!docketDetail;D=CDC-2015-0112

-To get ideas about what you might want to say in your letter:  http://nationalpainreport.com/response-on-cdc-opioid-prescribing-guidelines-pain-patients-need-to-be-heard-8828943.html

-Excellent Facebook event forum for pain patients, answering questions in real time and giving advice regarding the CDC letters: https://www.facebook.com/events/1099948746690760/

 

You are the perfect person for this job! You CAN do this! Let’s all do it together!