Category Archives: type 2 diabetes

What’s in a Name?

If there is one positive thing to come out of the tragic passing of Robin Williams, its the fact that so many people are talking about depression.  There is a huge effort to help people to understand the dark insidious nature of this disease–and the fact that it is a real disease not just a feeling of melancholy that we all experience now and then.

Clinical depression is a prolong sadness that has a chemical component that most often requires specific medications to begin to improve. It requires the use of a medical doctor and can be physically debilitating.

The most interesting thing that I have read in the past 36 hours or so since I heard about Robin Williams’ passing is a debate that I hear in the world of diabetes all of the time–people would pay more attention to this disease if it had a different name.  People think of depression as fitting things like “rain on your wedding day and a free ride when you already paid” to quote Alanis Morrisette.  These are not exactly issues that lead a person to take their own life…unless they are already experiencing a much deeper pain.  There is a feeling of a need to disassociate the mental illness from the emotion.

In the world of diabetes, we see this same desire often.  People feel that the label Type 1 diabetes does not go far enough. It doesn’t show the true nature of this disease.  It does not remove itself far enough away from another condition that is often associated with poor diet and the ability to be “cured” with diet and exercise.

Personally I am always led back to Shakespeare when this debate is brought up.  “What’s in a name? that which we call a rose By any other name would smell as sweet.”  Okay, diabetes is not as pretty as a rose and when you can smell “sweet” when dealing with diabetes we know that you are in serious trouble but you get the point. A name means nothing. It is all about the awareness.

Type 2 diabetes is not limited to people who are overweight. It is not magically cured by diet and exercise, but it is able to be managed that way unlike Type 1 diabetes.  Type 1 diabetes will not be cured with insulin.  Wearing an insulin pump does not mean that you don’t have to think about diabetes ever again.  Misconceptions.  Fallacies. Misinformation.  It happens with every disease.

The general public is ignorant about many things. I knew nothing about diabetes until it tried to steal my son in March of 2000.  I now know more than some medical professionals but I know little about Multiple Sclerosis or other diseases. We educate ourselves to what is important to us. It is our job as people who have become experts is to educate the outside world to the important parts of our conditions.

They do not need to know how to carb count but we must work to teach the general public that there is no known cure for diabetes…unless you are a mouse.  An insulin pump does not mean that you have diabetes “really bad” and it does not cure your diabetes. It is a management tool that requires work and fine-tuning but is preferable by many to help maintain better blood glucose levels.  Myths must be debunked to create better understanding and support.

Much of the same can be said for depression. It is important that the stigma be removed–just as the stigma of diabetes needs to be gone.  No one “caused” either condition.  Both require medical attention and serious work to be able to manage.  Ironically depression is twice as common in people living with diabetes as it is in the general population and if you have depression but don’t currently have diabetes, don’t worry because people living with clinical depression are more likely to develop type 2 diabetes!

Robin Williams is getting people talking about depression. Mary Tyler Moore, Brett Michaels, and Nick Jonahs have all done the same thing in the world of Type 1 diabetes.  Our goal as people who live with these conditions each day is to make sure that the conversations do not end and to take this opportunity to educate people on the realities and dispel the fantasies.
rosePlease remember that if you are experiencing a prolonged sense of sadness that is impacting your daily routine or having thoughts of suicide, please contact a medical professional. If you are having trouble dealing with life with diabetes, a counselor or life coach may help you to find new coping mechanisms.

The Bad Kind

The other day, I sat down to begin reading Ginger Vieira’s new book “Dealing with Diabetes Burn-out“.  I had only read the introduction when I wanted to cry.  Why is there so much judgement surrounding diabetes? Why do people living with diabetes feel that they are either good or bad? Well, as Ginger points out, its because there is so much good and bad mentioned when talking about the disease.

Your readings are good or bad.  They are not the result of a carb counting error or a pending illness that you cannot foresee. They are a good reading or a bad one.  The food you eat is either good food or its bad and a diabetic shouldn’t eat it.  Your A1c when you see the doctor is either good or bad.

The constant judgement does not end there. I was listening to a conversation a few weeks ago and quietly cringed as I heard someone mention that a person had diabetes “really bad”.  Another person had mentioned that someone had died because they had the “bad kind of diabetes”.  I wanted to say that there is no good kind!  You can only hope and pray that a person with diabetes has all of the knowledge, supports and tools that they need to care for themselves in the best possible way.  It wasn’t my place to educate at that time.

The good kind I assume, is the kind that is managed by diet and exercise  but is it really that good? You still have to live with guilt for each piece of food that enters your mouth.  You must be constantly wondering when that bullet will hit its target and you will get the dreaded sentence–”You have the bad kind of diabetes”.

What is the “bad kind of diabetes”? Is it when you have to have needles? Is it when you are on pills? Is it when you are overweight? Is it when you are two and don’t know why you have to be stabbed and poked at all of the time? Is it when you have to be hooked up to a machine 24/7? When does it become “bad”?

Personally, it is always bad.  In all of those cases, our bodies have rebelled against us and are not working as they should.  We have to fight and struggle to compensate. Using insulin actually can make it easier not worse. Modern insulins allow people with diabetes to be able to match insulin to food amounts in a way that their body, without insulin, can’t.  That’s not such a bad thing. It allows them to have that piece of chocolate cake without concern of a crazy high a few hours later.

This distinction between “good and bad” actually has a negative impact on treatment as well. While insulin injections or insulin pumps are not an option for a person living with Type 1 diabetes, it is often seen as a last resort for a person with Type 2 diabetes.  Sadly this is not the case.  Studies have shown that giving a person with Type 2 diabetes insulin earlier can actually preserve some of their beta cell functioning and make their lives a little easier.  Unfortunately, that “good and bad”  issue stops that from happening. People fear that they will be “bad” if they are on insulin.  This further translates to the thought that  those who live with Type 1 diabetes and need an external source of insulin to keep them alive must have it “really bad”.

I thought about other diseases and wondered if any others have it “bad”.  Cancer has stages.  Diseases like MS are referred to has having “full blown MS” versus the early stages.  I could not think of any other disease that allows people to have the “good kind” or the “bad kind”.  Is it the lifestyle component but if it is why do we not hold that same standard for other “life style” related diseases? Is it because in the other diseases they understand that lifestyle is only a small component? People will say that Type 1 diabetes is NOT a lifestyle related disease but that does not stop the public from blaming the lifestyle of the mother of a person with diabetes.  We are blamed for things like not breastfeeding long enough and other equally ridiculous notions.

What is the answer? How do we fix this? I don’t think that there is a quick fix.  I think that we continue as we have been. We educate people who ask us if we have the “bad kind of diabetes”.  We work with the media when they try to get it right. We are kind but firm with those people who are ignorant of the facts because we may have once been ignorant as well. Finally, we find a cure so that no one ever again has to be judged because their body has failed them.
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The Blame Game

When a person is diagnosed with lung cancer do we blame them? Do we question their lifestyle and then make them feel ashamed? Do we minimize what has happened to them because they possibly brought in on themselves by not listening to the anti-smoking ads?
 
If a person is young and suffering from dementia do you blame them for drinking too much? Do we shun them because they should have dealt with their alcohol problem before it brought on a much larger issue?
 
We may shake our heads…and they might also.  We may wish that they had chosen a different lifestyle but we often also look at others who lived that exact same lifestyle and are fine.  We wonder why them?  We feel sad, but we do not blame the victim.
 
Why then does society feel that it is okay to blame people living with diabetes for their disease? As a parent of a child with diabetes, we are asked if we fed our children a lot of sugar.  It is suggested as mothers that we did not breastfeed our children long enough to ensure that they developed the proper antibodies to protect themselves from developing diabetes.  The list of non-sense reasons go on to the point that parents become frustrated and angry.  They try to distance themselves from people living with Type 2 diabetes which lives with its own stereotypes in hopes of making the blame go away.
 
People with Type 2 diabetes obviously caused their disease and are therefore to blame for everything. We know that it is a lifestyle disease that strikes people who are overweight, eat only fast food, and are terribly lazy.  It is all their own fault.  Because of their bad behaviors they are the causing  increased hospital costs, increased taxes to pay for those costs, and probably the reason that gas prices are so high!
 
Can you see the logic? You are right, there is none.  Diabetes seems to have a genetic component of some sort that is triggered by something. If we could figure out the hows and the whys, then we would have a cure and everyone would be quite happy.  Sadly, there is no cure. There is no definitive why.
 
As a parent of a child with diabetes, I know that I did not force feed my children large amounts of sugar.  My children were not given sweets when they were younger. They did not have a large amount of processed foods. They were breastfed for differing amounts of times and were both vaccinated on schedule.  Did I do something to cause my youngest son’s diabetes? I pray not but I have enough to deal with without delving into a myriad of “what ifs” on the subject.
 
My son lives with diabetes. He has for the past 14+ years. We have worked and continue to work to keep him as healthy as possible That takes a lot of time, effort and money to purchase the supplies and devices that are best for his care.  The financial cost of keeping him well is nothing compared to the return that the government will get by having a healthy, productive member of society contributing to their tax coffers for many years to come.
 
As person with Type 2 diabetes also faces many stereotypes.  They are overweight and therefore caused their disease.  They are out of shape and live off of fast food. Really? I know many overweight people who do not have diabetes. I have met athletes in great shape who have Type 2 diabetes.  Does body shape make either one of them any less important? Does their age mean that its their fault?
 
Do we blame a child for developing Type 1? No, they are innocent but we can blame their parents. They should have done more! Do we blame adults who find out that they are insulin dependent as well but it doesn’t happen until they are in their 20s?30s? or later? I mean they obviously screwed up somewhere as well right?
 
Are you starting to see the insanity? Why do we waste energy on blame? We do not blame the person with liver failure or dementia for their past lifestyle.  We do not suggest that the parents of a child with leukemia should have breastfed their little one for longer. Why then do we feel the need to blame people living with diabetes?
 
The answer is not changing a name. As Shakespeare says…”What is in a name? A rose by any other name smells just as sweet.”  Well diabetes–type 1 or type 2, is just as rotten a disease no matter what you call it. No matter what the name of the disease involving the improper use of production of insulin is, it is still a disease that happened TO someone. It is not a reason to shun or demean someone.
 
I can think of no other disease that is so misunderstood to the point of creating real danger. A lack of understanding about the serious nature of this disease can result in people with diabetes not having access to the best medications or devices. It can mean that when diagnosed, people with diabetes do not always understand the serious nature of the disease.  It can result in frustration and anger in people living with diabetes when they try to educate the general public, educators and even medical staff about the realities of the disease–its costs and the toll it takes on everyone involved.
 
It is time to end the blame game.  Diabetes sucks.  That is a fact that we must focus on. It is a very serious disease that does not care what color you are, how old you are or how big your wallet or insurance coverage is.  It will enter your life and change it completely.  It will threaten to end your life. It will always hover on the sidelines waiting to wreak havoc on your day. It must be stopped but sadly we must first end the blame and so that we can all focus on the cure.
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Since I can’t adopt you…

This summer I had the chance to sit in on a CWD Friends for Life Canada session led by Korey Hood on Diabetes Burnout. It was a great chat that once again brought out the D-Momma in me.  

I listened to adults talk about wanting a break and my heart broke. I finally spoke up and told them that I so wanted to be able to take them all home and give them that break. Sadly, I was serious! A few people were willing to take me up on my offer and asked what day they could come over. I wish my house was big enough to accommodate them although slipping into an adult’s room, that was not one of my children, to test them at night may border on the creepy. 

Nonetheless, I still have that feeling–the need to protect and make life easier for people living with diabetes no matter who they are or what age.  As a result, I have been emailing daily with a young lady who was recently diagnosed.  Her struggles also touch me and make me want to adopt her–obviously I forget the frustrations that come from my own teen with diabetes during these moments! I want to help her to find her life again. 

I have been this way for a long time. It has led me to do a lot of the work that I have done in the diabetes community–the Disability Tax Credit reform, working with schools, and working with governments. I want to make it easier for others but I have struggled trying to find a place where I could make a difference to someones daily life. This past summer I found it! 

I enrolled in a course to be a Certified Life Coach Practitioner.  I was anxious and excited. Could I do this? What was I going to do? Could I really apply this to the diabetes community? Could I pass this course? The answer was a resounding YES to all of the above.  Not only could I apply it but I had finally found my passion.  

Life Coaching is about holding people accountable while they find balance in their lives.  I could now help parents to find themselves again after being swept away in the diagnosis of their child. I could help adults who struggle to find their way through weight loss goals and new restrictions because of a diagnosis of Type 1 or Type 2 diabetes.  I could help people living with diabetes to get back to living.  I could help people to move forward to find the balance in their lives. I could be a safe place for them to vent, to cry, to scream and to move forward.  I had found my calling and the energy it has created in my life is amazing! 

Since I can’t adopt everyone who has diabetes living in their homes and I can’t move each and every one of you into my house, I can only offer you my ear, my insight, and a safe harbor to help you find your way through the storm. If you are interested in the idea of having a Life Coach to help you through the trees and find the sunshine again, please consider contacting me.  There are many coaches out there and I may not be your fit but I am a mother who has lived with diabetes in her home for over 12 years now.  I am passionate about diabetes care and have learned from the very best people in the world–others living with this beast! I love what I do. I love helping, listening and walking with you as you journey forward in a life with diabetes not one ruled by diabetes.   


Diabetes Boot Camp…Revisited



In March of 2009, I pondered the idea of a diabetes “boot camp”.  I had mentioned the idea in previous posts as an option for a non-compliant teen but began to think about it in a bit more of a serious tone at that point. I wondered if one could truly create a place for learning that was not a supportive atmosphere but a place for tough love?

So many people think of diabetes as not that big of a deal.  We often hear of teens who just can’t be bothered.  There are people with Type 2 who do not take the disease seriously and there are the adults with Type 1 who are just burnt out and can’t get up the energy to fuss any more. Could I create something to help these people had been my question. 

Over the years, this remains my most popular post.  Comments are still coming in and my mind is still wondering, thinking and inquiring.  As some of you know, I am a big supporter of the CWD Friends for Life Conferences.  I am on staff at the Canadian conferences and tell anyone and everyone that they should go to a conference. They are vital to many but there are a few who arrive desperate for their child to “get it”.  They hope that the interactions will be the magic pill that they need for their child to focus and take care of themselves.  I wondered if a more harsh approach would be best.

These teens often shrug their shoulders and skip vital sessions. They are not interested in making new friends and block out attempts to get through to them. Would a harsh approach work? What would a harsh approach look like? How could you get results like “Beyond Scared Straight” but for a disease?

What about type 2s? How do you get to them? I think that in some respects they would be easier than teens and in others they would be a lot harder to reach.  Someone suggested learning sessions with or without your partner.  I think that would be helpful. Adults know that they are going to die.  They can be shown that they are putting themselves on the fast track by pretending that they do not have a serious illness.

That leaves adults with Type 1.  They know the drill. They may even know what to do but they need a kick.  They are living with depression or burnout and they need help.  A butt kicking approach could be successful but with a lot of support thrown in once they decide to move forward.

Diabetes boot camps do exist. I have seen a few posted that are directed at primary care providers.  There were even one for people living with diabetes but I did not see anything along the lines of what is in my head.  What is that? Well its a very fragmented idea at the moment. I see three very different needs.  I see the need for specialized experts who are also very caring individuals.  I see the need for sponsors to be involved and the support of diabetes organizations. I see exercise as being important but so are many other areas. I see intensity and education balanced with compassion and understanding.

I invite you to re-read the old Boot Camp post.  I also would love to hear what you think on the subject.  What would you want to see? Do you know people that could use this approach?  Could it be virtual or should it be only a physical location(s)? What problems or benefits do you see? Leave a comment or email me.  I would love to hear from you as I seriously begin to revisit this concept in 2012.