Welcome to the Diabetes (R)Evolution

| Mar 20, 2009

This marks the beginning of a new era of living with diabetes!  The time has come to end the limited way in which we view, address, and manage diabetes.  The perspective that diabetes is solely a medical condition is archaic and is limiting our progress toward improving the lives of all those who live with diabetes.  One's experience with diabetes is not determined exclusively by one's medical care. As those who live with diabetes know all too well, diabetes affects nearly every area of their lives.  To date, there have been virtually no concerted efforts made to assist people with the array of "non-medical" components that come along with living with diabetes: that is, until now.

The Diabetes Wellness Center (DWC) is a nonprofit community center dedicated to empowering individuals living with diabetes to identify, address, and overcome the physical, psychological, social, financial, and environmental obstacles and barriers to living well with diabetes.  The DWC offers a revolutionary grassroots response to address this ever expanding diabetes epidemic and potential threat to the security of this great nation.  It is important to note that the DWC is not a medical center. Rather, it is a concerted effort to move beyond the exclusive medical model to an expansive paradigm that addresses the vast range of aspects to living well with diabetes.  

With all due respect to the medical community, I would like to preface my comments with the notion that no matter how amazing the science, technologies, and pharmaceuticals become, there will always be more to living with diabetes than merely the health aspects.  The medical community has done a stellar job of understanding the pathophysiology of diabetes and how to theoretically prevent the complications of uncontrolled diabetes. Still, "poorly controlled diabetes is the leading cause of adult blindness, end-stage renal disease, and non-traumatic lower-limb amputations. It also doubles the risk of stroke and heart disease."  This is not the fault of the medical community, but rather is, in part, due to the fact that there are factors outside of medicine that are not currently being addressed, which will improve the lives of those who live with diabetes. 

A Brief History of the Diabetes Wellness Center

The dream of a place where people living with diabetes can come together and create a community, united by a compassionate motivation to improve the lives of everyone living with diabetes, came to me several years ago.  After living with type 1 for over 20 years, I was hired to work as a pharmaceutical representative for a company that sells medications for type 2 diabetes, when the idea struck me.  I realized that my personal experience of feeling disenfranchised, overwhelmed by diabetes, and uninterested in changing the way I lived my life was true for most people living with diabetes I met.  And here I had thought I was the ONLY ONE.  Hardly: I was actually in the majority!  

The reality is that over 95 percent of diabetes care is done by the person who has it.  If that person is disenfranchised, lacking in resources, overwhelmed, in denial, or dealing with any other confounding issues, then the majority of diabetes care is likely ignored.  It seems that no matter how wonderful is the care people receive, that far too many are still struggling to manage the daily aspects of living with a chronic condition. How can this be true?  How can the best doctors with amazing education programs not be able to change the lives of their patients?  I soon came to believe that this might be because it is insufficient to deal with such a complex issue with a single means of approach.   

During the 30-plus years that I have lived with diabetes, I have noticed that diabetes affects and is affected not just by my physical being, but also by the social, emotional, financial, and environmental facets of my life.  When all these areas of my life are going smoothly, my diabetes care is seemingly less exhausting.  However, if any of these "non-medical" components are challenged, I find that it makes it more difficult to deal with my daily medical "chores."  This may not be the case for everyone, but I believe it is true for many of us.  I knew that if people could come together, then we would stand a chance of overcoming these "non-medical" obstacles to self-care and would therefore dramatically improve the lives of those who live with diabetes.

"Living with diabetes" for all intents and purposes means someone who has diabetes, pre-diabetes, or metabolic syndrome (a precursor to pre-diabetes), is close to someone with diabetes, or just happens to know someone with diabetes, be it their boss or bus driver.  It seems that everyone is living with diabetes, whether they know it or not.  This is why everyone is welcome to be a member of the Diabetes Wellness Center. Turning the tide of this national diabetes epidemic is going to take everyone.  

The good news is that we can improve the lives of those who live with diabetes, and the DWC has a plan!  The foundation is the development of an organized and motivated diabetes community.  Community development is essential to the success of this Diabetes (R)Evolution, just as community development was integral to human evolution. Humankind may very well not have survived if not for this evolutionary tool and yet, in the U.S. today, communities are becoming relics.  Hence, it is no wonder that so many people are struggling through their existence; humans need each other!

People living with diabetes have much to share with one another and learn from each other.  There are many things a person living with diabetes knows that are not known, and cannot be known, by a person who doesn't have it.  There is much to gain from exchanging pragmatic advice, such as how to not over-treat a low blood sugar and, more importantly, how to deal with the instinctual pressure to consume continuously until we feel better.  These experiences of feeling a "part of" can be beneficial in addressing feelings of isolation, which can be extremely detrimental to making and sustaining life-long changes. Other goals are to educate and empower all members so they will be more inclined to choose healthier options, and to join together to in order to achieve workable homogeneous solutions, thus creating a sense of belonging for all of those who live with diabetes. 

The DWC will offer opportunities to deal with the many aspects of living with diabetes that are not accounted for, let alone addressed by, the medical community.  The services include, but are not limited to, diabetes education, counseling, physical activity training, and advisors for the financial aspects of living with an expensive chronic condition.  

Diabetes education is integral to living well with diabetes. Comprehension of the material will be the deciding factor in how much education a person is recommended to receive.  All classes will be held in one on one, group, and family formats.  A common understanding is imperative for changing unhealthy family dynamics into healthier alternatives.

The counseling component is crucial for fostering and sustaining a healthy life with a chronic condition.  The question to ask is: how do people care for themselves if they don't care about themselves?  The simple answer is: they don't.  The emotional health of people living with diabetes has been severely under-addressed, and it is time for this to change.  

Virtually everyone knows that taking care of their diabetes requires physical activity, and yet this is one of the greatest challenges people face.  There are many reasons why this remains true, including that the person does not know what and how much to do, they are not shown how, and, most importantly, they do not have support to start, let alone sustain, an active lifestyle.  The DWC intends to assist its members in overcoming these challenges by staffing exercise physiologists to assess each individual's ability to do physical activity, recommending appropriate exercises, and offering activity classes on site in order to increase group support.  

The financial burden diabetes presents frequently determines an individual's ability to take care of their diabetes and life.  Far too many people have to make the decision to pay their rent or buy their test strips and medications.  It is no wonder that so many people continue to suffer the preventable complications of "uncontrolled diabetes" when we have made optimum diabetes care financially out of reach of the masses.  The DWC will staff advisors who can assist in identifying and applying for federal, state, local, and private programs and services that can lessen the economic burden of living with diabetes.  It is hoped that this will suffice until the diabetes community becomes an organized political force that can make the legislative changes necessary so that future generations don't have to face the demoralizing experience of being ridiculed by their doctors for not taking care of themselves, when the reality is that they could not afford to care for themselves.  

In addition to these services, members of the DWC will be encouraged to volunteer in their diabetes community.  Some possibilities include mentorship, outreach education, and advocacy.  Mentorship offers an invaluable service to our community. The mentee will have a person who lives with diabetes to assist in understanding how to maneuver the numerous challenges and barriers to living well with diabetes, and the mentor receives the benefit of living life as an example.  There are times when self-care can be difficult to muster the energy for, and in those moments it can be beneficial to have the knowledge that people look to you for an example of self-love and self-care.  A primary goal is to work collaboratively to overcome many of the obstacles that people face, such as offering rides to members who cannot make it to their appointments or supervising the children's activity area so parents can attend groups and classes without having to worry about childcare or advocating for a person's health and wellbeing.

Concluding Comments:

Attempts to change the national diabetes epidemic or international pandemic will fail without focusing the majority of efforts on helping individuals living with diabetes to help themselves.  Something must change; we, as individuals, communities, nations, and world, cannot afford to continue to stay the current course of diabetes.  The financial implications of the diabetes epidemic may very well be the final straw that bankrupts the United States.  Income tax is the financial basis for most federal and state programs.  Where will we be when people who have diabetes and did not get the care, resources, and empowerment needed to live well end up suffering preventable end-stage complications of uncontrolled diabetes, lose their jobs, and then, rather than contributing to the tax system, require tax-funded services like Medicare and Social Security?

It is imperative to consider the long-term implications of this national diabetes epidemic when thinking about where, when, and how to spend the limited resources available to improve the state of diabetes.  Funding for the DWC is seeding for change.  While still in its infancy, the DWC has received a 501C3-nonprofit status from the Internal Revenue Service and is actively seeking start-up funding.

The Diabetes Wellness Center is dedicated to changing the course of diabetes in our lifetime.  All of us who live with diabetes have more power than we realize, and with the power of the people living with diabetes, anything is possible. Together we can and will change the world!  On with the Diabetes (R)Evolution!

If you are interested in knowing more about the Diabetes Wellness Center, please contact: Heather Jacobs, Founder and CEO, at hjacobs@diabeteswellnesscenter.org.

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Categories: Blood Sugar, Community, Diabetes, Diabetes, Losing weight, Support Groups, Type 2 Issues


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Comments

Posted by Anonymous on 22 March 2009

THATS GREAT WE REALLY NEED SOMETHING LIKE THIS

Posted by HeatherJacobs on 25 March 2009

Thanks for your comments! I believe our Diabetes Community CAN and WILL change the world.
We're on our way!
Please help get the word out!
Thanks for your support!
Heather

Posted by jacquie on 26 March 2009

This is great....we can always use the support.

Posted by Katharine on 26 March 2009

This project has the potential to benefit many diabetics. their families and employers.
I wish you well. We have more comprehensive medical care in the UK but don't really provide anything with the scope that you envisage. Internet based forums have certainly helped my family but this is not for everyone and the added personal touch should be even more effective. I would really like to see you post again to let us know how your project is developing.

Posted by Anonymous on 26 March 2009

Sounds like a great idea. Diabetes (type 1) is bigger than most realize and effects many facets of our lives.

Posted by Anonymous on 26 March 2009

Heather - this is amazing. You articulate, with intelligence, wisdom, and passion that comes from living a LONG time with diabetes, what is missing and needed for so many of us. THANK YOU! I can imagine some hearts and minds cracking open a bit with your clear images of the support that might, no - WILL - be possible - as your center grows, and as others around the world take your lead. The money will come...! Keep going, sister! :) - Heather Nielsen Clute, LIving w Type 1 since 1997; Hood River, Oregon

Posted by eonan on 26 March 2009

This sounds miraculous. Community support.
I would like for diabetics to look at this new research into the cause of diabetes.
http://www.diabeteshealth.com/read/2008/07/10/5825.html.

This new science indicates that there is a greater relationship between chlordane pesticide stored in the fat and diabetes than obesity. The article does not mention this but other studies have said that chlordane causes obesity as well. Also other chemicals are associated with obesity such as Monosodium Glutimate or MSG. Other recent studies link diabetes with Alzheimer's and oddly enough chlordane exposures may cause toxic encephalopath that mimics Alzheimer's. Alzheimer's can only be diagnosed absolutely with a post mortum exam and far fewer autopsies are being conducted today than in the past. Chlordane continues to contaminate from 30-60 million homes and is insideous as many homes are sold with chlordane contamination and the new homeowners may never know of the contamination or that chlordane was taken off the market because it could not be applied without the excessive risk of causing serious health injuries or cancer.
I would like to ask every person living with diabetes to demand that the federal government look into this linkage between chlordane and diabetes. It is time they stopped blaming the victim and forcing tax payers to pay of injuries that corporate criminals caused and never paid for and who continue to poison indescriminately. Call you elected officials please. I know what chlordane can do I have an inoperable brain tumor as well as diabetes, thyroid cancer, chemical intolrerance, autoimmune, lung and liver damage, and on and on. My daughter has similar injuries and heart damage. We should not subsidize toxic industry with our health and our taxes.

Posted by thomasgoffe on 27 March 2009

It sounds as if you are taking meaningful steps forward to address some of the issues that doctors, nurses and diabetes educators do not have the time or personal insights to address. In my 15 years with Type I, I've noticed that I cannot go more than 2 to 3 hours in a day without some type of reminder such as eating, blood testing or injections that this disease has a substantial impact on my life. Add to this the economic, emotional and social impacts and it leads me to believe that there is a complication that occurs on the day of diagnosis. This complication does not have a name, so I'll call it Diabetes Life Change (DLC). When I was diagnosed, my first CDE said "life as you know it now is over." She was right, and I think it is time that a multi-discipline group study the effects of DLC.

Thanks for bringing this problem up and working to resolve it.

Posted by Anonymous on 27 March 2009

I am a "new"diabetic myself, but not new to diabetes ---- my mother had it, and I gave her injections for years; my cats have had it, and I have injected them and watched what they ate when and so on. My daughter's diabetic cat suffered several seizures ( not her fault).
When I first learned of my condition (adult onset, diabetes I ) I was eager to treat it on my own as much as possible, and for two years tolerated the Atkins (no carb, minumum carb) diet. I took only Lantus, and lowered my numbers with walking --- sometimes 45 minutes brought down the score 100 points --- and sometimes, same walk, same time ONLY FIVE POINTS. I lost 20 lbs in 2 years --- from 130 to 110 --- not ideal, because I LOOKED awful. Never mind that I craved some good food --- potatoes, pasta, rice.
To get to the point --- I finally found a terrific medical team (TEAM!!!) -- people INTERESTED in their work, not just eager to get you in -and -out- in- 15- minutes-and have a hand in your ( and your insurer's) pocket. Here, I could reach the doctor DAY AND NIGHT if my sugar went too high or too low, or if I had a question (I used this only twice in the 2 months I have known him.) Furthermore, my sessions with the doctor ( 2 so far) have lasted an hour each, although I spent an hour each with the dietician and the educator.
What am I trying to tell you? That TEAMWORK is crucial. and it IS AVAILABLE, but you need to seek it out. I don't live in Utopia ( Cleveland, Ohio is hardly utopia)--- but since I availed myself of the help, my life has improved immensely.
I want to helo others --- and to that end I will try to organize a group on the campus where I teach. Sure there are other support groups --- but this will be more accessible to the staff and faculty ----and I would like to reach the students.
So far, I have mentioned my condition to only a few, hoping they would talk among themselves --- maybe to account for the days I taught while I was in a blurry, semi-functioning condition (that was before I began taking control of my sugar).
We have a Wellness Center --- that's where I plan to take my campaign. I am sure they will pick up the ball ---- and run with it.
My hope is that some of you will use your workplace --- to join a group, or start a group.
Good luck and God bless us all.

Posted by Rick on 27 March 2009

I think this is a wonderful idea and will benefit many, many people. I have had type 1 for 43 years. In 1966 there was nothing like this. They gave you a long needle and an orange and that was how you were suppose to learn how to inject yourself. It was very scary for an eighteen year old at that time. So much more is known now. I actually envy those who are diagnosed today. They're lucky! They have all the tools to live a long and healthy life. And I feel a cure is very near. When I use to get the blues, I think of Jim Valvano, the late coach of North Carolina State basketball. After leading his team to a national title he was diagnosed with a deadly form of cancer. Appearing at an awards show, he was helped to the stage to speak. His body was ravaged with tumors and he said something that I will never forget as long as I live. He said,"Don't give up. Don't ever give up." That's tremendous courage. He had nothing to fight this disease off with. We have many things. Use them and live long. God bless you.

Posted by rivag on 28 March 2009

How fantastic to see the work you are doing. As a fellow type 1 living with diabetes 37 years and doing similar work in diabetes, I applaud you. I agree not only is the diabetes epidemic growing beyond our capacity to manage it financially, but those who already live with diabetes are not improving their own management largely for all the reasons you state and the simplest one, how can you care for your diabetes when you don't care for yourself. I have been helping patients build emotional resilience. Not merely to cope with diabetes but to create an exceptional life with diabetes. To use our diabetes as a stimulus to create better health and a more appreciative life. To use our own positive emotions to build the resilience to manage diabetes on a daily and yearly basis and find deeper meaning and purpose in life. It's exciting to see a wellness center that understands diabetes living will only improve when we address the systems, context and environment within which patients live. riva

Posted by Anonymous on 29 March 2009

I want a cure for diabetes Type 1. That is the only place I put my energy and money. People who need emotional support can go to ADA, JDRFI, etc.

Posted by Jaime on 3 April 2009

I'm very happy to have read this article. I think the DWC can be a tremendous help to any who wish to take advantage of it.

I have lived as a type 1 since 1952, a few months before my thirteenth birthday. I definitely know the 'learn by poking a orange' routine, then before leaving the hospital injecting myself the last four days of a 7 day stay.

A diabetic has to learn to advise himself on how to care for his condition, as all the doctors know is what they read in a book in med school. Unless they themselves live with it, they truly have little knowledge.

Living with diabetes can be a totally frustrating experience..I'd had hypo-glycemia unawareness for years (with unfortunate results), but did learn how to avoid that condition within the past two years by reading a book published by a doctor who has lived as a diabetic since the age of twelve also...simply by limiting my carb intake and thereby reducing my insulin required by a substantial amount.

I do hope this DWC will succeed...we need to get the price of test strips under control.

Jaime

Posted by bernus on 5 April 2009

Without the medical community and their "amazing the science, technologies, and pharmaceuticals" there would be no living, period.

Thank you medical community.

Posted by aat3877 on 15 January 2011

I think this is wonderful. So many times I have gone to my doctor when all I really needed was someone who could answer a question for me. I have wanted to talk to someone who has been through what I am going through.


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