Category Archives: diabetes education

Diabetes still isn’t sexy!

Happy Canada to all!! Here is one of my favorite posts inspired by a great parent of a child with diabetes….

October is Breast Cancer Awareness month. Everyone knows about breast cancer. If you are a woman like me, you fear it.  Everyone knows pink.  Everyone knows about losing a breast, chemotherapy and all of the other nasty things that come along with that horrible word–cancer.

November is Diabetes Awareness month. Very few know about diabetes.  Most people think it happens to someone else.  They don’t think its serious.  They are not sure if the awareness color is blue or grey…and aren’t really that concerned.  They know about blindness and amputation but that is not a given so its really not that big of a deal.

Its the ignorance of the disease that is frustrating.  The “its no big deal.” and “You worry too much.” comments that kill you.  I recently had a teacher ask me if we could arrange my child’s highs and lows around an exam schedule.  She was well meaning and very sincere.  She thought that perhaps with warning of when a test was coming, that we could make sure that my son did not go high or low during that time. She was told by myself and one of her colleagues that it didn’t work that way. 

It is hard to make people “see” what those of us who live with diabetes in our lives 24/7 “see” each day.  They don’t understand why we test during the night and deprive ourselves of much needed rest.  They haven’t had a friend not wake up from diabetes.  They don’t understand how quickly a low comes on even after you have recently tested.  They haven’t seen a child pass out in the middle of a playground because they went low and didn’t know how to tell you.  They don’t understand why we are so fearful of ketones.  They haven’t seen the how quickly they attack our loved ones leaving them weak, frail, and clinging to life and how long it takes to get rid of them. 

To most people, diabetes is that disease where you can’t have sugar (I mean its called “the sugar” isn’t it?).  Its that disease that Grandma had but she liked to sneak cookies so its no wonder she went blind. Its not like cancer or a serious disease. No one dies from diabetes.  Parents who test, hover, and want you learn about that thing called Glucagon are just those overprotective people who need to learn how to let their kids just be kids.

I don’t know how to get the majority to understand.  As someone recently said, diabetes is not sexy.  It is not a disease about pretty pink ribbons and cleavage.  Its a disease that is grey and about blood.  There is nothing attractive about diabetes.  You can’t see a pancreas.  Don’t get me wrong. I am very attached to my breasts and would love a day when we don’t have to worry about breast cancer but after years of being my son’s pancreas? Well, it may not be a sexy organ and it may not have any appeal to the general public but I guarantee it has my utmost respect and I would not want to lose it either.

So what is the answer? How do get more people to understand? We keep going as we are and then some.  We advocate. We educate. We communicate.  We teach those who want to learn.  We tolerate some ignorance and try to help them to understand what this disease is really about. Its a long road. Its frustrating at times but with each person who learns the reality? Well its another person who wants a cure almost as much as those of us who live with it.
October is Breast Cancer Awareness month. Everyone knows about breast cancer. If you are a woman like me, you fear it.  Everyone knows pink.  Everyone knows about losing a breast, chemotherapy and all of the other nasty things that come along with that horrible word–cancer.

November is Diabetes Awareness month. Very few know about diabetes.  Most people think it happens to someone else.  They don’t think its serious.  They are not sure if the awareness color is blue or grey…and aren’t really that concerned.  They know about blindness and amputation but that is not a given so its really not that big of a deal.

Its the ignorance of the disease that is frustrating.  The “its no big deal.” and “You worry too much.” comments that kill you.  I recently had a teacher ask me if we could arrange my child’s highs and lows around an exam schedule.  She was well meaning and very sincere.  She thought that perhaps with warning of when a test was coming, that we could make sure that my son did not go high or low during that time. She was told by myself and one of her colleagues that it didn’t work that way. 

It is hard to make people “see” what those of us who live with diabetes in our lives 24/7 “see” each day.  They don’t understand why we test during the night and deprive ourselves of much needed rest.  They haven’t had a friend not wake up from diabetes.  They don’t understand how quickly a low comes on even after you have recently tested.  They haven’t seen a child pass out in the middle of a playground because they went low and didn’t know how to tell you.  They don’t understand why we are so fearful of ketones.  They haven’t seen the how quickly they attack our loved ones leaving them weak, frail, and clinging to life and how long it takes to get rid of them. 

To most people, diabetes is that disease where you can’t have sugar (I mean its called “the sugar” isn’t it?).  Its that disease that Grandma had but she liked to sneak cookies so its no wonder she went blind. Its not like cancer or a serious disease. No one dies from diabetes.  Parents who test, hover, and want you learn about that thing called Glucagon are just those overprotective people who need to learn how to let their kids just be kids.

I don’t know how to get the majority to understand.  As someone recently said, diabetes is not sexy.  It is not a disease about pretty pink ribbons and cleavage.  Its a disease that is grey and about blood.  There is nothing attractive about diabetes.  You can’t see a pancreas.  Don’t get me wrong. I am very attached to my breasts and would love a day when we don’t have to worry about breast cancer but after years of being my son’s pancreas? Well, it may not be a sexy organ and it may not have any appeal to the general public but I guarantee it has my utmost respect and I would not want to lose it either.

So what is the answer? How do get more people to understand? We keep going as we are and then some.  We advocate. We educate. We communicate.  We teach those who want to learn.  We tolerate some ignorance and try to help them to understand what this disease is really about. Its a long road. Its frustrating at times but with each person who learns the reality? Well its another person who wants a cure almost as much as those of us who live with it.

That smoke was from my brain

Did you see the smoke? Yes, once again I have been thinking. As I put away the dishes in the dishwasher and listened to the radio, my mind began to wander.  I was listening to stories of the latest cancer relay. I had heard of celebrity involvement in a recent camp day benefit.  I had received a great note from a friend who had done a story on someone involved in the Edmonton protocol who wanted to share.  All of this together in my head as I dealt with my domestic duties sent me carening into one direction…Advocacy!
It may seem weird but that is how I ended up there. I began to think back to an idea that was presented to me years ago. It was from a diabetes organization in another province.  They wanted people to truly understand and “get” what was involved in living with diabetes–type 1 or 2.  They went through a lot of planning. They had prizes and celebrities involved.  They did not do a walk or have a car wash, they asked people in the public eye to live with diabetes for a day.  They had them test and inject.  They had to weigh carbs and deal with both highs and lows.  They made them stop what they were doing and think about diabetes numerous times during their day. 

I always thought that was powerful.  The high profile people involved were from the media and the government.  Getting to them was a great thing.  Getting them to understand was even more powerful.  This is something that I have wanted to do for years. I would LOVE to get tv people, radio people, and people in government (especially those in health and education) who had to experience what we do each day.  I think the memory would stay with them for years.  I know you could never get someone to voluntarily jab themselves with a needle 4+ times per day or even lance their finger but there are other ways to still make the point.

This brought me to another awareness effort that was done years ago. I believe it was through the JDRF but I could be wrong.  It was again, a large organization who sent out emails multiple times during a specifice day–“test your blood”, “Inject”, “you are low, treat yourself and retest in 15 minutes”, “You are high.  Drink a lot of water and inject”.  This was great but emails are easy to ignore or put off. The use of an elastic to snap on your wrist for tests or injections was great however.
Awareness.  Understanding. A knowledge of how serious diabetes truly is.  That is what I would hope to accomplish if I could do something similar to these two ideas. To bring people to a new level of understanding. It would be wonderful for others to understand why we live in fear.  It would be great for more governments to understand why we need help for our children and why our loved ones need access to these supplies and devices.  It would be great for the media to grasp what this disease really is and take a bit more care in their reporting.

Maybe this is something I will have to work on. My November Diabetes Awareness project perhaps? What do you think?

Dia-Beat-Us?

Many of my American friends will call me Wilfred Brimley because I am one of those weirdos who say “dia-bee-tus” and not “dia-beet-ez”.  Of course, to me, my way makes much more sense but I am aware that when you break the pronunciation down it sound defeatist.   I have actually been pretty positive lately.  My son is slowly starting to take better care of himself.  As Reyna recently pointed out, he has been successfully honing his Macgyver skills.  We are coming up on 11 years of living with Diabetes and while I would still think an eviction order should be given, I am still able to count my blessings.

The top on my list of blessings remains the wonderful friends that living with Diabetes has brought us.  These amazing friends have raised equally amazing children.  This week I was given the privilege of seeing how incredible these kids can be. I was invited to be a part of a group called “CWD Teens for Change”.  It is made up of teens who want to give back. They feel that  Children With Diabetes Conferences have given them so much that they want to share the experience.  They are donating their lunch money, Starbucks money, babysitting money and more so that they can the money required to bring a teen and their family to one of the Friends for Life Conferences.

The enthusiasm that this project has been met with has been overwhelming.  It truly makes you proud.  Maybe that is why when I first read an article a day or two later in the “Natural News” that I filed it as “not worth my breath”.  The author tried to make me feel “beaten” as he suggested that feeding my young son milk and my own diet during pregnancy may have caused my son’s illness. Its not enough that I have guilt about not recognizing the symptoms of diabetes and having my son come within hours of dying. Nope, I now need to question if I gave up on breast-feeding too early and re-examine what I did or did not eat while I was pregnant.  I don’t have that kind of energy to waste dude. 

So I continued my week deciding not to even mention the article to friends or post it on my website.  Who needs this crap? I was happy to see teens doing such amazing things–including my own teen.  I would not let Diabetes “beat us”.  Unfortunately a second moron gentleman, felt it necessary to add his two cents on why my son (and other children) had developed Type 1 diabetes.  According to this person, “Many researches are claiming that childhood diabetes type 1 and Type 2 could be related to excess sugar intake and poor quality diet.  Children are consuming sodas, juices, milkshakes and candy in excess, may be a big contributing fact to acquiring Type 1 and Type 2.”  and on he goes to say that these children are inactive and poor parenting is also causing this problem.

WT???? Yeah, right bud! My son was diagnosed when he was two years old.  At that time yes he drank milk and juice.  I don’t think he had ever had any pop (soda), he never had a milkshake (and I am not sure he even has at 13), and his candy intake was non-existent.  He was two and keeping up with his five year old brother.  Inactive was not in his vocabulary. I actually wonder if he was too active because he only stopped to sleep! 

This guy pushed me to the edge. I wanted to write. I wanted to scream a few choice words at him.  I looked at the 32 comments slamming him at the end of the article and felt a bit more vindicated so instead I posted it to a few friends on a Facebook page.  They were just as choked as I was.  Soon more emails and phone calls were hitting this poor fool and a retraction was quickly published. 

I know that there is no cure for stupid. I know that we can only keep working to educate and create awareness. We are succeeding in creating caring, generous, and amazing young people.  Hopefully we will also begin to succeed in creating more aware and responsible media outlets that allow such garbage to be published. 

What’s all the hub-bub, Bub?

Once again a celebrity has opened their mouth before thinking about what was being said.  Yesterday Rikki Lake mistakenly stated that Type 1 diabetes was preventable.  She never knew what a hornets’ nest she walked into with those few words.  Very quickly after her faux pas on Good Morning America, social networks were abuzz with outrage that people with Type 1 diabetes were once again being “blamed” for their disease.

I admit that I did stand up and state that I thought she was a bit of an idiot.  I also stated that sadly, like diabetes, there is no cure for stupid.  I do believe that people coming out in the media should have their facts straight before they open their mouth.

The entire diabetes community was not up in arms about this as the furor might have suggested. I had a few friends who, like many of us, are simply tired of stupid.  They have decided not to get their undies in a twist over every misstatement made in the media and simply take solace in the fact that their children understand how serious their disease is.

I do appreciate that feeling.  I have reached a point where I do pick my battles.  I understand that there was a piece on the popular show “The Doctors”, in which diabetes was discussed, Type 1 was mentioned but still the gist of the story could leave people thinking that lifestyle would “cure” Type 1 diabetes.  I can’t be that picky.  They mentioned the two types, people need to be healthy, okay I am done.

When picking my battles, I do take exception to statements like that made by Miss Lake.  I do not expect everyone to be an expert on diabetes, but unfortunately when people are given the opportunity to be in mainstream media AND they are promoting themselves as somewhat of a health expert things change.  There are many people who watch them and believe what they say.  They do not research the validity of what they say, they assume it to be so because they saw it on a credible show. 

Again, the question was so what? Who are these people that believe everything they see on TV and how do they impact my life? They are your teachers, your neighbours, your politicians, and John Q Public who looks for a worthy cause to support each year. 

I know that most of these people should be smarter than that.  Should be perhaps but how much information does the average person glean from the media and do they tend to just take at face value? I read yesterday that a person refused to donate to the JDRF because they knew that kids were eating too much junk and their parents should be ashamed of themselves for giving this disease to their kids.  My two year old never had a piece of “junk” until he was much, much older and at that point it was in moderation and with an external source of insulin to keep him alive. 

The misinformation about diabetes (both Type 1 and Type 2) spreads much faster than true facts.  The diabetes community knows the difference.  We complain and occasionally, as was the case with Rikki Lake, sincere public and private apologies are made.  Does that change the big picture? Probably not.  We need to educate as strongly with “good” information.  Myth spreads like wildfire. Its just like gossip.  Truth and the real story is not pretty. 

Children drawing needle marks on their body was a powerful message that it did not run very long on public television stations.  The fact that people with Type 1 diabetes are still seven times more likely to die at a younger age than their counterparts gets shuffled to the back pages of journals, never sees the front page of a paper, and garners little if any media attention. 

So what does this mean? Do we sit quietly when stupid remarks are made? Do we not bother to educate because people aren’t getting it anyway? No.  I think we educate more.  We groan when someone is stricken with “stupid” and then we work harder to “cure” them. They will never become as well versed as we are because their lives or the lives of their loved one’s are not hanging in the balance but hopefully they will get one step closer to knowing that diabetes is serious.  Diabetes is deadly.  Diabetes is not a disease that anyone wants or enjoys.  It needs to be cured.

We’ve all got something

This week I finally got a chance to sit down with my son’s teachers, the principal and the lady in charge of special education to talk about diabetes as it pertains to my child. I appreciated the opportunity and once again was a little nervous going in.  I reminded myself that I talk to people about this very subject–how to speak with your school about your child’s diabetes.  Why was I so worried about my prep? Why was I concerned about how I would be received? Because I am human. Because I am a mom.  Because I have been educating people for over ten and a half years and still am lucky if I get through to a quarter of them. 

I worried, who would show up.  Would I hold their attention? Would they be willing to learn? There was a teacher who had a diabetes connection in her family, would she know everything? Would she know anything? Yep, basically I was terribly paranoid.

The school has been wonderful to date.  Its another small school and my son seems to have quickly become comfortable there. He is still a quiet child but he is involved in their lunchtime sports and comes home talking about various students in his class and things that they have done.  That is definitely a huge weight off of my shoulders. That also made me anxious about going in and making more demands.  

It was vital however that they understand how the brain functions (or doesn’t function) when high or low.  I had to make them understand that he was private and often would not tell people when he was out of whack.  I did not want to come across as a demanding parent but these were important concerns.  These were things that would impact his academic career.

Things went well.  Everyone was very open and willing to learn.  One teacher did know about this and that…and she truly did.  She even asked if he carried Glucagon.  The other teachers asked questions and the principal began to work out a plan on how best to deal with the issues at hand.  Teachers were fine with readings being written on exams or writing them when in range if need be.  YES! One victory.  The next issue was how to make the other children aware of his diabetes.  We all agreed that other students are our best protection.  They see more, they are with him more, they can help a lot more than most adults in many situations. The next question was how would we handle this? How do we get my son to talk about his disease? According to him, no one in his class knows he has diabetes. This had to change.

The conversation led to another person at the table stating that she wished her daughter would open up more about the learning issues that she faced.  As I sat at the table I realized that in that small class, many students were facing some sort of a challenge.  It may have been physical as in my son’s case or it may be something that challenged how they learn.  Everyone has something. Everyone carries some burden.  Everyone faces challenges.  That became the angle that one teacher decided to take. It was decided that diabetes would be a health topic but discussing your own issue and the battle you face would be a project that all students would do in another class as well.

This should be interesting. My son does not talk about his disease. He probably figures that Mom talks enough for the entire family and then some. At breakfast we discussed how important it was that he talk. He needs to have people around who know that he has diabetes and who can help him in an emergency.  In his old school, his friends had grown up with diabetes. In our new area education is just beginning. I hope he opens up a bit at least with a few students. Time will tell I guess.

Pushy? Overprotective? or Educating?

Can you be too pushy? Too demanding? I know that you can be but where is that line?

I received an email from my son’s principal yesterday with a time and date for us to meet regarding his care in school. I was very pleased that time had been taken for a meeting to discuss with them my experiences and concerns.  After 24 hours, I began to consider who would be at this meeting. It was to be small, which was fine but then I realized that the people involved were his home room teacher, the principal and a special education teacher.  The home room teacher also teaches him two other classes so that was fine but why a special ed teacher? He has no learning disabilities. He has a physical condition that can impair his thinking but we do not need special learning techniques or anything like that.

I then realized that we were missing a few key teachers from core subjects.  I emailed the principal back today and asked about at least one other teacher that I felt should be there. I explained that I understood that they had had an in service with a nurse but there were cognitive issues around testing and homework that needed to be discussed.  She emailed me back and said that she would invite all of his teachers to attend.  I truly appreciated that she did this and I hope most, if not all, will attend but I began to wonder if I was being too pushy.

One teacher is hypoglycemic and another told my son that she also has a child with Type 1.  These two people should be a major help but I still worry.  How long have they been dealing with this? Do they truly understand all of the implications? Are they looking at me like an overprotective nutcase? Am I an overprotective nutcase?

I don’t think so. I think I am an educated person who sadly has had to learn that this is a disease about more than just taking insulin and testing.  I have seen the impact of highs and lows on my child’s body as well as his mind.  I have seen him high and unable to answer basic questions in class. I have seen him low and unable to write at all.

So many people still think of diabetes as “Grandma’s disease”.  Very few people understand the magnitude of how it affects the mind and the body.  Many people do not understand how quickly changes can occur.  Most people have never had to see the other side of diabetes.  They have not seen the unresponsive loved one who has gone so low that they are slipping unconscious.  They have not seen the child who cannot see or grasp how to turn on a light.  They have not seen a person so weak from ketones that its all they can do to get to the toilet to vomit.

I guess in this case, its my job to make sure that they understand. Its my job to warn them and prepare them. Its not just about protecting my child but its also about making them aware and ready to handle these things when it happens in their classroom. Hopefully if they think I am overprotective today, they will thank me later when they begin to understand and see for themselves what diabetes can look like up close.

My teacher tried to take away my pump!

“Mom! My teacher tried to take my pump away today.”
“What?????”
“Yeah, I was in class and my pump went off. I had a low battery so I took it out to turn off the alarm. She walked by and said I’ll take that!”
“What did you do?”
“I said, No problem but its kind of attached!”
“What did she do?” 
“She looked at the tubing and then turned around and said Oh.”
“Hasn’t she seen your pump before?”
“Nope, I usually have her right after lunch and don’t need to take out my pump.”

Well I guess we know who gets a “Bad Mom” award this week. School is almost over and I never did get around to having the in-service for my son’s school.  It was to be done at the beginning of the year because we were getting three new teachers on a staff of about seven.  The teacher that would be handling my son’s class however was not hired until almost Christmas.  We were going to do it just before Christmas.  We were going to do it just after Christmas.  I guess we will do it next year! 


It is all my fault.  I have only two children to worry about.  The principal has entire school to deal with.  He has other issues to deal with…okay so do I but diabetes is pretty high up there on my list.  In my defense, I was having a lot of difficulties with my son’s academic behavior at the beginning of school this year and his diabetes care was a battle between the two of us.  I really didn’t have the extra energy to keep fighting to educate everyone else. 


Yep, bad, bad Mom.  This same bad, bad mom has to do a presentation this week to a class of students wishing to be teachers’ aids.  I have my work cut out for me.  I supposedly did a great presentation last year.  I know we took up a lot of time, no one was bored and they seemed to learn a lot.  You would think that I would have kept a presentation like that since it went so well.  Well you can think it but I have taken apart my computer and found log books from six years ago but no presentation from last year on dealing with a child with diabetes in school.  Darn!


Tomorrow its back to the drawing board.  I have to remember what they should know, what they are required, what they may want to know, and what they should ask about. Wish me luck!