Its a new year. A lot of people make resolutions to do things like lose weight, check their blood sugars more often, or to get a bit more active. Another option is to choose a word to live by for the year. This is a word that inspires you and encourages you. A word that resonates with you and helps you move towards your goals. My word for this year is growth.
If you have been following Diabetes Advocacy for any length of time, you have seen a lot of changes.
We started out as a place for people to share information about the Disability Tax Credit. We grew to help families who were struggling with their children with diabetes in schools. Diabetes Advocacy became a hub for insulin pumpprogram advocacy and so much more. Over the years, we added a blog to document our lives, review books and products, and share information.
Diabetes Advocacy has also undergone some cosmetic changes. The website is now completely mobile friendly. We can be found on Instagram, Twitter, and Facebook. We have a monthly newsletter once again that shares tips and information.
Do you see how perfectly the word fits? Diabetes Advocacy is growing! This year I will continue to update the site and provide great content and more products. There will be more downloads and tools to make your life easier! There will be more of the great content you have come to love over the past 16 years.
What would you like to see added to the Diabetes Advocacy site? What topic would you like to see us tackle?
All of our downloads can now be found in our new digital store! We will continue to add more products on a monthly basis so be sure to take advantage of our growth!!
Did you make a resolution this year? Do you have a word that will inspire you? Let us know!
The summer is over and it’s now time to get back to work.
This summer I saw a number of variations of this status posted all over Facebook…
“I would like to highlight the Liberal government removing the subsidy for blood test strips. Diabetics need very frequent blood testing, up to 5+ times a day. The cost of strips is $70.00 – outcome – reduced blood glucose testing and more hospital admissions from hyper or hypo glycemic episodes.
Diabetes . . . I am asking if everyone could put this as their status for 1 hour. I’m pretty sure I know the ones that will. Think of someone you know or love who has or has had diabetes. My hope is that in 2016 a cure will be found. Will you post it for 1 hour? To honor those who have fought or are fighting diabetes.? “
Many people were sharing this status. Many more were asking…where is this from? Whose government is doing this? The answers were surprising.
I was certain that it was Newfoundland. This spring the new Liberal government announced changes to the provincial prescription drug plan. They were limiting the number of test strips to 2500 annually for those using MDI, 700 for those using just a long-acting insulin, 100 for those not using insulin and 50 for those who have only recently been diagnosed with Type 2 diabetes.*
As this post continued to make its rounds, however, I was shocked to see that a number of other locations were also claiming that this was a reality in their home area. People from as far away as Australia were saying that this had happened to them. They said it was their government that the post was directed at. All I could think was, “this is crazy!”
For years, study after study has shown how important tight control and home blood glucose monitoring is. They have shown that good control equates to improved health outcomes AND immediate financial benefit in terms of reduced loss of work. Why would governments think that they were saving money by cutting access to blood glucose testing strips?
This entire scenario hits too close to home as my son turns 19. He may soon be in a position of losing his health care coverage. His days of being covered by his father’s private health care plan are numbered. My stomach aches each time I think of this safety net being taken away. He does have some coverage from the province. We will find a way but what about other children?
I don’t mean small children, I mean adults who are struggling to find their way. What about them? What about their families? How do they cope? How do you work a minimum wage job, pay your rent, buy your groceries AND cover your diabetes care costs?
Again, we know how important blood glucose testing is. As parents, we have spent years asking our children “Did you test?” and “What was your blood glucose reading?” How do they answer those questions when they can’t afford the test strips? How accurate will their guess have to be?
Without proper testing, they cannot accurately dose their insulin. They cannot make exact judgement calls on corrections. They will run a high risk of complications. They most likely will have more sick days. This will cost governments more money in lost tax revenue and create an increased drain on hospital services.
If a person with diabetes is unable to test and stop potentially dangerous high blood glucose levels on their own, they will be forced to seek hospital treatments. A 2008 report in the Toronto Star suggests that one typical hospital stay then cost approximately $7000**. $7000…you can get 100 strips for $80-$100. If you test 8-10 times per day that one hospital stay would still cost more than 2 years worth of test strips. Two years.
It would appear that the people in charge of making these policy changes need to better understand what they have done. Basic math shows the folly in such policies. We can only hope that public pressure and common sense will ultimately prevail. Our loved ones with diabetes need access to the proper medical supplies to ensure that they can continue to be healthy, productive members of our societies.
Can you believe it? Its Diabetes Blog Week again already! I knew it was coming and then I opened up my computer and BAM!!! Its here!! This year there will only be 5 posts so I had better get started…
Why am I here?That’s simple and complex. For me, blogging began as therapy. It has been a way for me to share my life, my experiences, my highs, and my lows (literally). It has been a way for me to share my opinions and my thoughts.
The funny thing is that as I began sharing, people became interested. Parents began to message me and tell me that they they were going through the same thing. They told me that my ramblings made them feel less alone.
Because of this, over the years my why has changed a little. I no longer write just for me. I now also write to show others that they aren’t alone in their trials. I hope that I can share the serious nature of the disease mixed with the quirky and funny side of this life. I hope to make some people think and others to simply say “YES! She gets it!”
What is the most important diabetes awareness message to you? For me there are two messages. For the parents and people living with diabetes the message is that you can do this!I want them to know that even after their darkest days, there will one day be light. You have options. You have knowledge. You can use it. You can ask for help. You can turn to others and you will get through. Together, we will make it. I promise.
For those who don’t live with diabetes, the awareness message that I want them to receive is that diabetes is serious and deadly. It is not a one size fits all. It is not as simple as take an aspirin and call me in the morning. Diabetes takes a lot of work. Diabetes takes no breaks. People who monitor their diabetes care are not obsessed, they must do these tasks to stay alive and healthy. Not monitoring your health can cause very serious problems down the road.
Why is that message important for you, and what are you trying to accomplish by sharing it on your blog?It is important to me for people with diabetes to know that they can do this because my son lives with this disease. He is now a young man finding his way. I want him (and other people’s children) to feel confident in speaking out about what their needs are. I want them open to learning and growing. I want them to understand that there is a community that is there for them to help along the way.
I want people without diabetes to understand how serious diabetes is because it almost killed my son. It has killed friends and friends’ children. It is a deadly foe not to be taken lightly. Too many people do not realize that and it costs unnecessary lives. That needs to change.
#LaceUp4Diabetes Have you heard of it? I admit that I hadn’t. What I had heard of was a friend on Facebook who was giving away these adorable shoe laces.
I commented on how cute they were. He offered to send me a pair. Unfortunately because we were living in two separate countries, the hassle of mailing them was a bit much. He did however pass along to his contact that I was interested in the laces. This was the result…
Thirty pairs of shoes laces with the World Diabetes Circle on them!
It was a wonderful surprise. I had only expected one pair.
These cute novelty items are the work of Novo Nordisk in an effort to offer support for those living with and at risk for, diabetes. They write “Because if we all take these steps together, we can change diabetes.” So very true! Whether we work together towards a cure, to offer support, or to change legislation, one voice united is so much stronger.
Yesterday the talented Kelly Kunik asked people to tweet using the following prompt…#IWishPeopleKnewThatDiabetes The response overwhelmed her and made many people feel less alone. It was a fabulous initiative. I sent out a few of my own tweets as well.
Diabetes is a complex and complicated disease. What did we want people to know? Many of us wanted people to understand that this is a very serious disease. Yes, my son looks normal and for the most part he is normal–a lot unique but quite normal. Very little stops him in life but everything he does comes with extra thought that others don’t have to consider.
He has to look at the nutritional value of food every single time he puts it in his mouth. This doesn’t mean just reading labels when he is on a specific diet, this means every single day since he was 2 years old. No matter what he eats, he must know exactly how much energy or carbohydrates are in the food so that he can match it to the amount of insulin he will require. Too much insulin can put him in a coma or kill him, too little insulin can ultimately do the same thing. He has to give his best guess on how that food will react in his body–how long will it last in his system? Is it a higher fat food or does it have a lot of protein or fiber? Will he be exercising right after he eats? Did he exercise a lot yesterday? Is he coming down with a cold or is he worried about an upcoming event? Everyone of those things and more will impact how his body metabolizes the piece of food he wants to eat and how much insulin he will require.
There is no respite. He must make those decisions every time food touches his lips After 15 years of diabetes education, he makes the process look easy. A person looking at him rarely notices the insulin pump that he carries in his pocket. Few people see him lance his finger. It is rare for people around him to know how much it takes for him to keep himself alive and looking as healthy as he is.
When he visits me, he gets a small break. I test him while he sleeps and make the corrections. I will help with site changes and we will bounce ideas off of each other on how much insulin he requires. He still carries the bulk of the load now however.
To stay healthy and complication free also requires a lot of money or great health care coverage. My son has been lucky. His father had coverage for his insulin and test strips. When we decided to put him on an insulin pump, we received help on the cost of his first pump and later received generous support for pump supplies. In recent years, our province has begun to cover both insulin pumps and his supplies. This is a huge financial relief. As I showed back in February, diabetes is very expensive if you have no insurance coverage.
For people with diabetes, these things are well-known but for those who don’t have diabetes, it can be shocking and hard to comprehend. Diabetes is part of my son’s life. He didn’t ask for it. He didn’t do anything to cause it. I breastfed him. I didn’t feed him sweets as a baby. His body, for currently unknown reasons, attacked itself and destroyed the insulin producing cells of his pancreas.
My son looks healthy. He takes part in almost all of the activities that others do with just a few more precautions. He eats like a normal teenage boy but he carries a jug of insulin with him to do so. He finds humour in the best places. He is a wonderful young many who happens to manage a life threatening disease on a daily basis.
#IWishPeopleKnewThatDiabetes has never stopped him but has taken a lot of work on both our parts.
#IWishPeopleKnewThatDiabetes has given us stress but also brought us the very best of friends.
#IWishPeopleKnewThatDiabetes is something that no one should have to deal with and I only wish that I could take it away from all of our children.
Thank you again Kelly Kunik for raising awareness in such a wonderful way!
These phrases are very important in the world of diabetes and specifically in the world of Type 1 diabetes.
I have always been vehement about people’s right to choose. I believe that individuals have to do what is right for them. What is right for you may be not right for me but does that mean that I should stop you from doing it, right?
I have been equally as dedicated to the right to choose since entering the world of diabetes. I believe that people should be able to go on an insulin pump at diagnosis and not wait for a specific period of time…if they so choose.
I believe that everyone should have access to a Continuous Glucose Monitor. Access should not be restricted by income level or insurance plan…if they wish to use one.
Most importantly I believe in the right to education. Education allows people to make informed choices. Just because an insulin pump has been the best treatment option for my son, doesn’t make the best option for you. Every person is different. Every body reacts differently. Each person should have the right and be educated to make the choices that fit their lifestyle regardless of budget. That is my point.
I know of adults who have pumped and hated it. They did not want to be tethered to something. They felt that they had better control with injections. That was their choice and they made it armed with information about themselves and the alternatives. Everyone is different.
I have met parents who have seen great success using NPH on their children. I was able to learn how to use NPH and a rapid acting insulin in such a way that my son rarely did without at birthday parties or other food related events. We were educated. We could make choices that worked for our families. What worked for us does not always work for someone else.
If someone chooses to use an insulin pump, they have to choose the pump that works for them. Some people don’t like tubing. Some people want a pump that is water-proof. Some people require larger reservoirs or a sensor augmented pump. It is vital that they be allowed to learn about their options and then make the choice that fits their lifestyle.
We all have seen how amazing Continuous Glucose Monitors are…but some people still don’t want them. My son is one of those not sold on the benefits of wearing yet another device. They have a right to make that choice but that choice should not be driven by money. It should be made based on their own desires and knowledge of their diabetes care.
No one should have to choose insulin or bread, pump supplies or car payment, insulin pump or house down payment, a cab ride home after a night out or a sensor for their CGM.
No one should be forced to use an insulin regimen because they are ignorant of the options.
No one should be stuck in one treatment form or the other because it might take a bit more time to educate them.
Options should be given to everyone regardless of age or income.
People with diabetes should be shown all of the insulin options–do you want to go with limited injections? Do you want to use a basal/bolus regimen? Do you want to use an insulin pump? What features are important to you? Do you want to have a pump with tubing or without? A pump with CGM compatibility or without? Do you want to try a CGM? What works best for you and your lifestyle? What will give you the best quality of life? Yes it can be overwhelming but knowledge is power.
One treatment option does not work for everyone. I have come across people who have created their own insulin cocktails to maintain great control on injections. I have known people who only used their pumps to cover meals and used an injection to deliver their background insulin. I am hearing of people looking to add in the use of inhaled insulin for very specific needs.
Everyone is different but everyone deserves the right to make their own informed choices. Those same people who make informed choices then deserve our respect because what works for them may not necessarily work for everyone else.
Its something that has really been plaguing me the last few days…how do we make people care? How do we help them to get it? Many people sympathize with all of the challenges that goes into dealing with diabetes. Some people will look wide-eyed and dazed as they realize all that it entails but very few truly understand the serious and overwhelming nature of this disease. In order to receive better funding for research or support with devices, its vital that common people understand but how do we do that? I hope you can help me with that.
My son was diagnosed with type 1 diabetes almost 15 years ago. Before his diagnosis, I didn’t get it. I knew one child growing up who had the disease and knew one person as an adult who had type 1 diabetes. She had to watch what she drank and could only use diet 7-up for her drinks. That was the depth of my knowledge. Today I am a walking encyclopaedia.
We don’t need the general public to have as much knowledge as those of us living with diabetes. We don’t need government officials who understand the ins and outs of the disease either but we need a greater empathy and understanding.
For years I have shared stories. I have given people the scariest moments to ponder. They have watched as my son ate meals at regimented times or devoured food with the voracity that only a teen can do followed by a large bolus of insulin. Despite that, I can hear in certain comments and see in various facial expressions that they still don’t really understand.
They think I worry too much…and maybe I do. They don’t understand the costs associated with the disease–emotional or financial. They cannot begin to understand having to spend thousands of dollars each month just to stay alive–we have insurance that covers that right? Obviously we have over dramatized things–they aren’t really that bad are they? Wrong.
Some people understand the freedom offered by a pump but fail to understand the importance of a sensor. The cost seems ridiculous when you can just lance your finger and have it done with. They don’t understand how important it is to “see” what is happening inside the body and to be able to anticipate and react to problems as they happen rather than later.
How do we make them understand? How do we make loved ones who don’t deal with this 24/7 truly comprehend what a person with diabetes goes through on a daily basis? How do we convey the stress and worry that they carry with then all of the time? How do we make an invisible disease visible and serious to those around us without the loss of limb or life? How do we remove the blame and create understanding?
These are real questions and I am looking for real answers. How do you handle these issue in your life? Please share them with me. I would like to be able to use new and more effective techniques as I continue to advocate for my son and others living with diabetes. I would like to see the world come to a better, more real understanding of what people go through so that they can be more kind and more thoughtful to those living with diabetes. That is my goal for 2015. Please help me to reach it.
Its September and that means back to school for many. For my youngest son it means heading back to a classroom for his last year of high school. How did that happen? We were only just preparing to send him to preschool yesterday and today we are discussing at what career he wants to explore.
This isn’t the first time this has happened to me. It was just as traumatic when my oldest son was graduating. He is now in the workforce and renovating his first home. I am way too young for any of this but somehow it keeps happening.
Despite my desire to keep them both babies, they have grown into young men but the challenges facing them are very different. There is a big reason for that and it is called diabetes. It seems to rear its head into every aspect and ways that I had not thought of. My 17-year-old son in less than one year will no longer be eligible for his father’s private health insurance unless he pursues post secondary education. If he doesn’t he will no longer be eligible to have his test strips and insulin covered. Yes, we do have a provincial drug plan that he can apply to to help reduce his costs but he has to know to apply.
Thankfully he is planning to attend a post-secondary institution so he will continue with some coverage for a bit longer but will his chosen career have a decent medical plan? I am not sure. I think so. His current career path will lead him into a union, the same one as his older brother, and I believe that he will have coverage at that point–I certainly hope so for his sake.
This is part of the reason for my desire to see changes to our current provincial insulin pump program. For the past few months I have been working with people and have seen time and time again how expensive diabetes care really is. It’s not like I didn’t already know this fact but hearing stories and sitting down to think about exactly how much money is spent each week, each month, each year can lead to jaw-dropping moments.
One person shared that they spend $8000 per year. That sounds like a lot of money. I could enjoy a lovely vacation for that or buy my son a decent used vehicle. In this case that $8000 is the cost after insurance so imagine what someone would be paying if they didn’t have insurance. You are right, they are probably are not paying that much more. Why? Because they have had to make ugly choices. They most likely had to choose to go on injections rather than an insulin pump. If they found the money for an insulin pump, they will have learned how to stretch out infusion sets long after they should be changed. They probably also know how to squeeze out every drop of insulin from a cartridge and perhaps they have even refilled a cartridge despite knowing the risks that such an action can bring.
For those who cannot afford the best medical tools, they are playing a game of Russian Roulette on a daily basis. My son and I have worked very hard for the past fourteen years to keep him healthy and he uses the best technology that we can afford. That is the sad part however, that people with diabetes must only use the tools that they can afford, not the best tools that will keep them the healthiest and happiest for the longest–only what they can afford.
That is terrifying both as a mother and as a human being. Imagine that your life depends on a clear liquid in a tiny bottle but you are not sure that you have enough to last you the month. What are your choices? Perhaps you can beg your pharmacist and see if they have a compassionate program but you are proud person who works hard every day. You don’t feel that you should have to rely on charity. You could avoid eating for a few days. That would limit the amount of “extra” insulin you need. Perhaps if you didn’t test as often you could save that money to use for insulin. That strange feeling you are experiencing might not be a low, perhaps its just stress over your supplies running low. Maybe you really don’t need to test. Maybe you will be okay….or maybe you won’t.
The reality is beyond scary. This is why I do what I do. This is why I advocate for improved access to insulin pumps, devices and supplies. Unless you live in this world, it can be very difficult to completely grasp and understand. I don’t want more people to live in this world so that they understand. I would rather that they live in ignorance but my son and too many others should not have to know these feelings. It is important that we take care of those in our society living with chronic conditions. It is equally important to aid them to purchase the tools that keep them alive and healthy and allow them to therefore fully contribute to society through work and play.
We all have seen how insanely popular the Ice Bucket Challenge has become. Stories of how much money ALS has raised since this went viral versus how much money it had raised in previous years are astounding. What is equally moving is the stories of families touched by ALS. I dare you to watch any of them without a box of Kleenex.
Last week on the Diabetes Advocacy Facebook page, I shared with you Moira McCarthy’s thoughts on this phenomenon and whether diabetes should be doing something similar. Reading about how ALS had touched her family brought tears to my eyes and I was so glad that my son “only has diabetes”.
I have not watched many of the ice bucket videos. I have seen a few that have auto-started on my Facebook feed but for the most part I simply have said “I hope that they are donating” and “Better them than me but it is for a good cause.” There are a few from friends who state that they have a personal connections to ALS that I do make sure that I play.
Maybe that is why I played this next video. It was from a Facebook Friend who had a child with diabetes who said that ALS had come to call. I was curious. Would it be her father? Grandmother? I was sure that it would be sad but I had been following the many blessings in their lives. They had recently moved across the country into a dream house. They had enjoyed an amazing summer spent traveling throughout this great country of ours. Life was very good for them, wasn’t it? After listening to her tell her family’s story, well let’s just say that I was again left very grateful that all my son had to deal with was diabetes.
I know that diabetes kills. I know that diabetes is serious. I know that things can change in the blink of an eye. In the past month we have seen depression kill Robin Williams. We have seen countless stories of how ALS has impacted and destroyed lives. I have seen a family devastated when a father tried to save his drowning daughter only to be killed instead. Life and death happen. We deal with the cards that we are dealt but some of us have greater challenges to face than others.
In a blink of an eye it could be worse–so much worse. Diabetes can be cruel but life with diabetes is getting better. Highs are still brutal in their destruction of the body. Lows are still deadly especially when they happen at night or when a person with diabetes is alone. There is hope however. Technology has created major changes.
We have the bionic and artificial pancreas projects. We have CGMs, rapid insulin, and smart pumps. We have apps to count carbs and apps to get us out of trouble. We have a wonderful community of people living with diabetes who get it and support us every day. Diabetes sucks but after seeing what others live with…well I will take diabetes with a bucket of gratitude.
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.