Friday, February 10, 2012

Taking Back My Life; Part 2

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Denise Coleman

Denise Coleman

Tue, February 02, 2010

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On Tuesday, January 26, 2010, I was in Albany, NY, to testify at a Legislative Briefing on low back pain injuries and the need for effective chronic pain treatment.  The primary cause for holding this briefing was a set of proposed guidelines on low back injuries, however we also took this opportunity to bring to the attention of those in attendance the many existing barriers to accessing treatments, whether they be lack of medical education about pain, insurance limitations or the negative perception about chronic pain that permeates much of society and the stigma associated with the more serious, and effective, pain medications.

 

I was there in my capacity as a volunteer spokesperson for the American Pain Foundation’s Action Network, which I have written about many times before.  Also speaking at the event were Will Rowe, president of the American Pain Foundation (APF), who spoke about the advocacy work the APF is doing and why it is so important.  William is a frequent contributor to this site and is tireless in his work advocating for access to effective treatments for all people in pain.  The third participant was Pat, a Physician Assistant and a pain management practitioner, who is also a Gold Star Mother, having lost her stepson in the war in Iraq. She spoke about the need for better resources and treatments for returning military and veterans who are experiencing injuries that will require a lifetime of treatment and pain management.  The final speaker in our group was Dr. A., a neurologist at Albany Medical Center, who has been involved in the pain management field for many years and wrote many of the existing materials used in the practice of treating pain.

 

The attendees ranged from legislative staff to advocates from other organizations and/or corporations, and a few members of veteran programs.  The level of interest the audience demonstrated, and the questions we received afterward, were a good indication that our presentation was well received.  In fact, I was asked for additional information about the American Pain Foundation and how a person could become involved,as well as whether I would be willing to speak to other groups. 

 

One of the primary goals of the APF Action Network is to reach out to various groups, including legislators, media, community groups, medical professionals, people in pain, and the general public to enhance awareness about the impact pain can have on a person’s physical and emotional well being.  My contribution at events such as this is to give the personal perspective by telling the audience how pain has impacted my life and the myriad changes I have experienced due to pain. I also emphasize the difference effective pain treatment can make in living a productive and fulfilling life.

 

On a more personal level, I want to share with you how good it felt to be doing something so productive.  During my 20+year career in higher education administration and non-profit management the areas of government affairs and community relations were part of my portfolio of responsibilities and I enjoyed the work very much.  I would often travel to Albany to represent the university’s interest while I worked in a state university, and while executive director of a national health organization and vice president of a private university I would often be in Albany and Washington advocating for better budgets, research funding or working on a special project that might involve a legislator.  All of my responsibilities involved interacting with people, whether they were faculty and students, alumni, community members, government officials, or media representatives, and it is probably the one aspect of my career that I miss the most.

2/ 2/10 12:56pm

I just want to say God bless you for the work you are doing for all of us.  I am an advocate with the National Patient Advocate Foundation.  I have not been able to do any physical advocacy because of my limited physical capabilities and being a caregiver for my partner with Parkinsonism.  I do contact government officials by email on important issues.  I have helped patients get assistance with medical needs.

 

We need so many more volunteers that do the wonderful work you do.  I think Leader is a wonderful tag.  You and others are leading the way for our future.

 

Huggles,

Ann

2/ 3/10 3:22pm

Thank you for your comments and kind words.  Your work as an advocate is vital to assuring that policies and regulations that affect those of us with physical illnesses and challenges reflect the real needs and issues that we face every day.  Elected officials may not read all the letters and emails they receive, but they do know how many they receive on each side of an issue and I believe factor that into their decision making.  Your work is critical and I hope you can continue it.  

 

I am fortunate that my physical challenges are still limited enough so I can visit with officials in their office, attend conference and speak in front of groups, and I hope to continue doing this work for as long as my body allows.  MS is a progressive disease so the future is questionable, but isn't that true for everyone?  I can't stop doing things today because I may not be able to do it tomorrow.  Of course some days are more difficult than others and we all have to pace ourselves.

 

Your role as care partner is something few people can understand unless they have lived it themselves.  My Mom had advanced Parkinson's and I know the toll it can take on both body and mind, so I applaud you caring for your partner while battling your own physical problems.

 

I wish you all the best with your health and with all you are trying to do to assist all of us with physical challenges.

 

Best,

Denise

2/ 4/10 8:17pm

your story was very well taken by me. I have been dealing with this strange pain that just one day came from I do not know where. Story  short finding pain medication that does not have these side effects seem to be very hard, and where I live is so far from the pain clinic that driving is one of the problems because I take these drug

2/ 5/10 12:04am

Thank you for your comments. Pain can be so pervasive it seems to take over your whole sense of self and when there is no obvious relief it can bring such despair.  I know because I lived with that for years.  I hope you don't give up and will soon receive the effective treatment for your pain that you deserve.  May I suggest that you go to the American Pain Foundation web site and check out the painaid section, as well as the publications that are available, specifically the ones that give guidance on how to find the best resources.  There are links to other organizations on this site also, and perhaps between them all you will be able to find a way to identify where your pain is coming from and how to treat it.

 

I wish you all the best, and hope that you find some relief soon.

Best,

Denise

2/ 5/10 10:01pm

Thank You, your words and information I welcome. I will check out the web page and I will not give  up. shadow

2/ 5/10 10:58pm

Hello, can any one help with this one? I have been throwing up today. My Dr. told me to make sure that I have three bowl movements a week. Well yesterday and today I had gas and pain in my stomack and today after doing everything my Dr. said to do, everything came up, and now nothing is staying down.Also I did have a little bowl movement.

6/ 4/10 3:24pm

Ms Coleman Im glad you spoke up to lawmakers regarding problems with access to pain care. As you know NYS was rated amongst the six worst states in the Nation in pain care and pain care policy by the Pain and Policy studies group. In addition, NYC hospitals in 2008 were rated the worst in pain care in the country.

Guidelines are not enough for back problems as doctors indicate you cant cookbook medicine and typically ignore guidelines. Moreover in NYS in the board of medical conduct - doctors polic doctors- and NYPIRG study showed this to be a flawed approach.

For pain care to improve as per " A Call to Revolutionize Pain Care in America- which your president Dr Fishman participated in- all health care providers need to be required to have education in pain care. Without requiring education in pain care, health care providers will continue to treat pain as unimportant and the negligent laissez faire attitude in the health care industry toward people with pain will continue. The costs for pain in this country are $300 billion annually- and rising rapidly. The public can no longer afford to wait for godot- we needed energetic changes in pain care forty years ago and now with pain due to painful procedures, diabetes, breast cancer, arthritis on the rise- it is unlikely in the foreseeable future we will be diminishing the incidence of pain or making substantial progress in pain care practices. In every single pain condition from plantar fascitis to tbi pain there is both inadequate research and practice. Practices remain dated and uninformed with lack of educated health care providers the most mentioned barrier to pain care. Whilst the health care industry hangs its hat on being "self-regulating"-meaning they wish to be as ignorant or as knowledgeable about pain care as they so chose their is compelling state need to require education of professionals in pain care based on humanitarian and economic reasons.

Until the public speaks up more the health care industry will continue to do all too little to improve pain care as they seem more or less satisfied with the status quo of poor pain care. As the Texas Pain Initiatives 2007 report indicated there is no cost to health care providers for providing poor pain care- the cost is to those suffering from poor pain care and those who care about them.

The massive failure to assess and treat pain can only be stopped by the public.

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