Thursday, September 25, 2008

National Pain Care Policy Act of 2008 passes in the House of Representatives

GREAT NEWS from the American Pain Foundation:


full text

summary (also printed below)

Now on to the Senate!

Here's how you can help, and it's REALLY EASY:

Go to the APF Online Advocacy Center. Click Take Action and fill out the form. Click Next Step, and your senators names will be filled in. Your can email and/or print your message to the senators (you can use the message the APF has already written for you, if you want).

For Release: September 24, 2008
Contact: Tina Regester
(443) 690-4707

Statement attributable to: Will Rowe, Chief Executive Officer, American Pain Foundation


Today’s Vote Represents Critical Step to Improving Pain Management in America

Baltimore, MD—“The American Pain Foundation (APF) applauds the U.S. House of Representatives for taking a critical step in helping to improve pain care in America by passing the “National Pain Care Policy Act of 2008” (HR 2994). The potential impact of this legislation on everyday lives cannot be overstated, nor can the tireless efforts of all of the individuals and organizations that have steadfastly joined forces to move this bill forward.

“Despite the fact that pain affects more than 76 million Americans—more than diabetes, heart disease and cancer combined—it remains woefully undertreated and misunderstood. All too common are stories of patients in the grip of pain, who are left to consult multiple care providers before their pain is properly diagnosed and managed, if it ever is. Not only is unmanaged pain emotionally and physically debilitating for patients, it also places a heavy burden on families and caregivers. The undertreatment of pain is also estimated to contribute to excessive healthcare costs and lost work productivity of approximately $100 billion every year.

“The present legislation authorizes an Institute of Medicine (IOM) conference on pain care, creates an interagency coordinating committee charged with identifying critical gaps in pain research, expands collaborative pain research across federal agencies and the private sector, and provides for a grant program to improve health professionals' understanding and ability to assess and treat pain. It also requires the Secretary of Health and Human Services (HHS) to develop and implement a national outreach and awareness campaign to educate patients and caregivers on the significance of pain as a public health problem.

“The companion measure (S3387) was introduced by Senators Orin Hatch (R-UT) and Christopher Dodd (D-CT) this summer. We urge members of the U.S. Senate to consider the millions of Americans who needlessly suffer with debilitating pain—whether it’s post-operative pain, pain from an injury or the result of well-known chronic diseases, such as cancer, diabetes and arthritis—when they cast their votes on this important issue.

“Congressional action to provide strong and effective direction and resources to advance pain medicine has been long overdue. Too many lives have been shattered by untreated or improperly treated pain, which can negatively impact almost every aspect of a person’s life including sleep, work, and social and sexual relations. People in pain have a right to timely, appropriate pain care.

“Since its inception, APF has been at the forefront of advocating for people living with pain and their caregivers. APF, along with a dedicated and extensive grassroots network of advocates and national partnering organizations, has been steadfast in its efforts to move this legislation forward. A basic tenet of medicine is to do no harm and to alleviate suffering. This legislation helps uphold the standard of medical care that every Americans deserves, and that which we should not falter to provide.”

Founded in 1997, the American Pain Foundation (APF) is an independent nonprofit 501(c) 3 organization serving people with pain through information, advocacy and support. The mission of APF is to improve the quality of life of people by raising public awareness, providing practical information, promoting research and advocating to remove barriers and increase access to effective pain management. For more information, visit the American Pain Foundation.



Pain is the most common reason Americans access the health care system and is a leading contributor to health care costs. Pain is also a leading cause of disability. Most painful conditions can be relieved with proper treatment, and providing adequate pain management is a crucial component of improving and maintaining quality of life for patients, survivors, and their loved ones. Yet people in pain often face significant barriers that can prevent proper assessment, diagnosis, treatment and management of their pain. The National Pain Care Policy Act of 2008 is designed to address many of these barriers by improving pain care research, education, training, access, outreach and care.


Section 2 authorizes an Institute of Medicine Conference on Pain Care to:
• Increase awareness of pain as a significant public health problem;
• Evaluate the adequacy of pain assessment, treatment and management;
• Identify barriers to appropriate pain care;
• Establish an action agenda to address barriers and improve pain care research, education, training and clinical care;
• Highlight disparities in pain care specific to populations that are disproportionately under-treated for pain; and
• Report to Congress on findings and recommendations.
Section 3 encourages the Director of NIH to continue and expand, through the Pain Consortium, an aggressive program of basic and clinical research on the causes of and potential treatments for pain.
• Requires the Pain Consortium to submit annual recommendations to the Director of NIH for appropriate pain research initiative that could be undertaken with the Common Fund.
• Establishes a Interagency Pain Research Coordinating Committee to coordinate all efforts within the Department of HHS and other Federal agencies that relate to pain research. The Coordinating Committee is charged with identifying critical gaps in pain research, eliminating duplication of efforts at HHS and other federal agencies, and expanding collaborative pain research across federal agencies and the private sector. Membership in the committee will include critical representation from outside of government


Section 4 creates a grant program to improve health professionals’ understanding and ability to assess and appropriately treat pain:
• Physician specialty groups and academic institutions involved in pain care will have the primary responsibility of
collecting and disseminating protocols for evidence-based practices regarding pain; and
• Authorizes the Health Resources and Services Administration (HRSA) to provide grants for development and
implementation of programs to educate and train professionals in pain assessment and care.


Section 5 requires the Secretary of Health and Human Services to develop and implement a national outreach and awareness campaign to educate consumers, patients, families and other caregivers on the:

• Significance of pain as a national public health problem;
• Risks to patients if pain is not properly assessed and treated;
• Availability, benefits, and risks of treatment and management options;
• Importance of having pain assessed and treated;
• Role of pain management specialists;
• Resources available to patients and other consumers to help in dealing with pain;
• Prevalence and causes of disparities in pain management among underserved populations; and requires an evaluation and report on the campaign’s effectiveness.
In designing the program, the bill emphasizes the need to reach underserved populations and to provide resources that will reduce disparities in access to appropriate pain treatment.

August 4, 2008

Working From Bed

Original publication date 7/8/08

9/25/08 Update: Ergoquest Recliner Workstations; Homemade Supine Workstation; Supine Zero Gravity Chair; Computing in Comfort

I do my computer work on a laptop from a very nice recliner because the time I can sit up at a regular workstation is very finite. It depends what my pain level is on the particular day. In trying it out so I can know what to tell the SSA, I've found that the time I can sit at a regular workstation decreases with each day in a row that I do it. In other words, the more I do it, the worse it gets.

I just use a tray with legs in the recliner, but it would be nice to have one of these Laptop Mount Boom Arm Workstation thingees.

Although I don't know if my mom would appreciate the aesthetics (or lack thereof) in the middle of her living room... she could probably live with it if it meant I could be gainfully employed again! So anybody out there got a job you'll pay me to do from home? I have looked into it, of course, and haven't found anything yet that I thought I could do, for one reason or another. And that leads into a whole different blog post.

Back to the Boom Arm Workstation. It can also be used from bed, if you can't even make it to the recliner:

EasyChair Workstation Starbase Series for LCD Flatscreen and Laptop

As long as I'm dreaming, how about this custom job with keyboard and mouse platform, copy holder and book basket?

And a table for miscellaneous accoutrements:

The EasyChairWorkstation website is excellent, although I would definitely recommend the use of voice recognition software, as opposed to trying to type from a completely horizontal position like some of the pictures show. (I'm going to try to get that VR software series done this month, by the way.)

I highly recommend that you bookmark this site, at the very least.

Yummy food pic of the day courtesy of Bee Green in Albany, GA: Seasonal fruit salad with cinnamon/flax crackers

Wednesday, September 24, 2008

Pieces of Bolivar

This song and slide show totally captures it. Written and preformed by Martin Melancon.

Tuesday, September 16, 2008

Hurricane Ike hits me where I used to live: Crystal Beach, Texas

Crystal Beach is on the Bolivar Peninsula. It's kind of above Galveston. It's point A, like this:

View Larger Map

I don't know about you, but I haven't seen or read much in the mainstream media about the devastation of Bolivar Peninsula caused by Ike. The guestimates so far are that 80% of civilization on the peninsula is gone. Just gone. Poof. There were a lot of high dollar houses in Crystal Beach, most of them being vacation homes.

I guess I've been getting my information from "social media technologies." I read about it on a post on a blog of social media for a PR Class, "Houston media relies on social media in the wake of Ike." Sure 'nuff, that's what I've been doing. I wasn't seeing much of anything on the news or weather channels and I was worried about my friends who live on the peninsula full time. So I went online looking for info. First I found ABC13's live video. There I heard a reporter reaming the governor of Texas for the media blackout surrounding what was happening on the peninsula. Then I started looking for pictures and blog posts about what was happening there. This is some of what I found.

The big picture before and after.

Sandpiper subdivision where I rented a house for a year and a half, before and after.

I think this site has the best comparison pictures so far. People are sending him their photos and he's posting them as fast as he gets them. He posted both of the photos above. After I saw this stuff and heard what they were saying on the news, I called my friend Suzy who lives in Crystal Beach full time. She owns and manages a great restaurant, DeCoux's, with her husband Larry, and she is also a real estate agent. She and all of her family are fine, thank God. But she says the restaurant and the real estate office, which were in a small strip center, are just a slab now. They are at a house further inland, and they have electric by generator, water and plumbing (for now). She seemed upbeat, considering. She seemed grateful for what they have, which is so much more than many others right now. That's grace in action. And I am full of gratitude that my friends are all right.

This is a great post about some different aspects of the tragedy: Hurricane Ike, West End, Bolivar Peninsula, and FEMA Response. If anyone is wondering why someone would disregard a hurricane evacuation order, there's a good explanation in this post. I did it once while I was living there. And I think he's pretty much hit the nail on the head. The author of this post reports that the historic lighthouse had its top shaved off, which was later found not to be the case. The lighthouse has survived once again (built in 1872, it made it through the great storm of 1900 that killed 6,000). That's a good thing. The lighthouse is very symbolic to the residents of the peninsula.

Some good photos here from Heather at MadNonnie.com. She took the lighthouse photo above.

So all of this has me thinking about what it must be like to be a person with chronic illness in the face of such tragedy. More on that later, maybe. And definitely more on good memories of Crystal Beach. Like this:

Sunday, September 7, 2008

Blog Talk Radio: How to listen to the Invisible Illness Week Conference with nothing more than a computer* and a telephone

*Note: Your computer has to have an internet connection and you must have Windows Media Player. You can download the latest version at the Windows Media Download Site. There is a version of Windows Media Player for Mac users as well. Mac users can also download Flip4Mac for the QuickTime player. Click here for links: How to listen to a show

BOOKMARK THIS PAGE - links to the shows

Conference Seminar Links - from National Invisible Chronic Illness Awareness Week main website

How Seminars Will Work - Register here and get some way cool goodies! Like this b-u-ti-ful bookmark:

More Info You Might Find Useful, from the BlogTalkRadio folks
About BlogTalkRadio

What is BlogTalkRadio?
BlogTalkRadio is the leading social broadcast network. We know you have something to say—so we’re providing you with the megaphone and the audience. Create your own live talk show or listen in on other shows from around the globe. Freedom of speech meets social networking.

How is BlogTalkRadio different from regular radio?
BlogTalkRadio fuses social networking with Internet radio. The web-based service allows you to host a live Internet radio show and take callers from the phone. Hosts can copy and paste a Flash player on their site or blog so listeners can click to listen. The shows are also made available as a podcast via RSS and iTunes. Your audience can listen online or on any mp3-friendly device. Listeners have tens of thousands of shows to choose from, far more than on terrestrial or satellite radio.

For Listeners

How do I listen to shows?
Search the network by keyword or choose from featured shows, show categories, or most popular. When you find a show, simply click on the button on the host channel page. Your computer must have the Windows Media Player . You can download the latest version at the Windows Media Download Site. There is a version of Windows Media Player for Mac users as well. Mac users can also download Flip4Mac for the QuickTime player.

What number do I call into?
You can set a reminder for any show, which will notify you before the show airs. The call-in number will be provided within the reminder email. Additionally, you can visit the host channel page for the call-in phone number.

Is this going to be a long distance call?
All phone numbers are local to New York, USA. Therefore, if you are outside the local area, you will be making a long distance call when phoning in to listen to a show. However, many phone carriers provide unlimited long distance for a basic monthly fee. VoIP providers also provide low-cost unlimited long distance service.

We now have the Click-To-Talk feature which allows listeners with a microphone headset to join a show without calling your dial in number, and hence for free.

I am a listener and do not see the "Click to Talk" button on the show page...?
First, check the scheduled air date and time. The "Click to Talk" button only shows up during the live show once the show has begun.

MORE Info You Might Find Interesting

The State of Internet Talk, from Talkers Magazine - The Bible of Talk Radio and the New Talk Media (Who know there was such a magazine? Not me!)

With Blog Talk Radio, The Commentary Universe Expands, from the Washington Post

Blog Talk Radio Talks About New Financing and New Plans
, from the New York Times

Saturday, September 6, 2008

The links on the Invisible Illness Week Schedule are working now

Invisible Illness Week schedule released - and it's really exciting!

Well, it's here: The schedule for the National Invisible Chronic Illness Awareness Week Teleconference, that is. It's a doosy, and I'm not just saying that. Many of the major players in the field of invisible chronic illness are included: Jenni Prokopy of chronic babe.com, Laurie Edwards of achronicdose.com, Jennifer Jaff of advocacyforpatients.org and others that I'm looking forward to hearing from and learning more about.

(The links on the schedule aren't working right now... hopefully they will get that fixed soon.)

Maureen Pratt, who I have quoted before on this blog (Chronic Monday: A patchwork of items on chronic illness and the holidays), and whose book "Peace in the Storm: Meditations on Chronic Pain and Illness" has been on my Amazon Wish List for way too long - time to buy it - will also be speaking and I'm really looking forward to that. Here's a sample of her work:

Keep My Mind Focused on Good Health

O Lord, I find it hard to remember what it was like
to be healthy.
Help me keep my mind focused on good health
and strength.
Let me be positive about the course of treatment
I am undergoing.
And let me always have faith, great faith,
in your presence in my life
and your glory in my health.

And last but not least, the Goodies to Buy are better than ever this year, too. My personal favorite is this black cap sleeve t-shirt that actually comes in sizes for Real Women!


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