Diabetes Advocacy Keeps Growing!

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 pump program 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.

Diabetes Advocacy now has over 700 pages of content designed to help people living with diabetes! 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!

Insulin Can Be Deadly. An Insulin Pump is a Tool.

Recently the CBC and partnering news agencies released an article on the dangers of certain medical devices.  In the article, it was suggested that insulin pumps are lethal and should be more closely scrutinized by Health Canada. I would have to correct the CBC in that it is not just insulin pumps that are deadly, but insulin itself.

insulin can be deadly

Too little or too much insulin can lead to death and the amount that constitutes too much or too little varies from person to person, from hour to hour.  There is a term used in the diabetes community, “your diabetes may vary”.  It is because there is no one size fits all dosing when it comes to insulin. A doctor cannot prescribe 6 units of long-acting insulin and 2 units of rapid-acting per meal for all 6 year-old children. She cannot tell all young males of 25 that they should set a basal rate of 1.2units per hour in his pump and bolus 10 units for his meals.

Diabetes varies

Diabetes varies between two seemingly similar people.  One six-year-old could be taller than the other.  One could be in hockey all day while the other was in a piano recital. The twenty fives year old males could both be on the same soccer team but one is a vegan and the other will be enjoying a post-game meal at Boston Pizza.  While both individuals need insulin to live the amount of insulin that they need will vary in every one of those situations.

It is just as impossible to prescribe one insulin treatment for one person.  As one person with diabetes discovered, there are over 42 things that can influence blood glucose readings. There is the fat content of a meal.  How many grams of carbohydrates are in the meal? What activity level occurred before the meal? How active will the person be after the meal? What was their blood glucose level before they ate? Are they coming down with a virus? Are they menstruating? Do they feel stressed at work? The list goes on making the “take 2 units a day and call me in the morning” adage impossible to follow.

insulin pumps
Insulin pumps are an insulin delivery method.

Instead of injecting a long-acting insulin, the pump administers small amounts of insulin on a regular basis throughout the day.  The amount of insulin it delivers is decided on based on a number of factors.  These factors are examined by both the person’s diabetes team and the person with diabetes themselves. They examine blood glucose and/or a continuous glucose monitor readings.  This is the same way that a person on injections will decide if they need to inject more long-acting insulin.

An insulin pump also allows delivery of insulin for meals and the correction of high blood glucose levels. Instead of injecting a syringe of insulin into their body, a person with diabetes is able to do the calculation with the help of their pump.  They then tell the pump how much insulin he/she needs based on previous glucose readings, trending arrows on a continuous monitor, amount of carbohydrates in a meal, planned activity levels, and much more.

Insulin Pumps do not think

As Dr. Peter Senior stated, the insulin pump does not think for you.  It will help you to make decisions but it is just a machine. Machines malfunction.  As pumpers, we understand this but as Dr. Senior also states “Type 1 diabetes carries life-long risks regardless of how people with the condition choose to receive their insulin.”

We understand that machines can fail.  We can only imagine the heart-break of the families who were interviewed for these articles.  The diabetes community is very familiar with how deadly diabetes is no matter what method of delivery you use.

blue candle
Diabetes Kills

If you spend any time in the Diabetes online community, you will quickly know whenever a member passes.  A sea of blue candles will appear on your feed. Our hearts break.  We know all to that it could be us. It may very well have been a friend.

We understand that diabetes is not about the jokes or the memes about Starbuck’s drinks. It is a careful balance of diet and insulin and never knowing when something will tip the scales.

To manage that balance, we need tools. Tools like insulin pumps that carefully mimic the insulin delivery of the pancreas.  We need tools like continuous glucose monitors that now tell us and our insulin pumps what blood glucose levels are in real time and are able to track if they are rising or falling. This ability to predict glucose readings can help to avoid further impairment.

Impairment like the 1445 incidence of hyperglycemia mentioned in the articles.  Hyperglycemia is a very real threat when you use an insulin pump.  There is no background insulin.  If you infusion set kinks inside your body (this is the piece that delivers insulin under the skin), you will not be getting the proper amount of insulin and blood glucose values will begin to climb.

t:slimX2 insulin pump
Insulin Pumps and Sensors are helpful tools

A sensor in the body tracking glucose levels on a continuous basis tells the wearer that more insulin is required. They are able to stop, examine their infusion set, the insulin pump, their activity level and diet to decide the best course of action.  It might be changing their infusion set. It could mean injecting insulin through a syringe.  There could be a problem with the insulin pump. This complete system allows a person with diabetes to more quickly access the issue before they begin to suffer the cognitive impairment that can accompany high blood glucose levels.

Try our 4-day course to help you choose the right insulin pump for your lifestyle.

Checks and balances

Checks and balances for medical technology are very important.  Devices such as insulin pumps must be thoroughly tested and reviewed before being approved for use.  Companies must be held accountable for their customer service and providing proper education to their clients.

The recent media stories, however, creates fear in the wrong place.  The CBC and its partners need to understand that diabetes is unlike most other diseases.  Most people with diabetes walk around and look like everyone else.  They fix your plumbing, teach your children, climb mountains and run countries.  You might see their pump or their glucose monitor sensor.  What you don’t see however is the hundreds of life and death decisions that they make each and every day.  You don’t see the challenges that they face.  They often don’t see them either because it becomes part of who they are.

wearing an insulin pump

Please understand that diabetes is terrifying.  Insulin pumps are simply helpful tools that allow our loved ones to live full and healthy lives.  We need more access and understanding not more fear of something that is already well regulated.

If you are considering an insulin pump, download our ebook to ensure you get the right pump for you. 

Why we need choice

When I first decided to put my son on an insulin pump I was overwhelmed by the choices.  I wasn’t sure exactly what we needed in an insulin pump but I knew I could get one from Roche or a different one from Animas.  There was one from Medtronic and there was a new pump in town, called Cozmo. We had four choices to consider.

How was I going to decide?

With the help of friends! I was part of an incredible online email list that told me which pump they preferred.  I also talked to sales reps who quickly became friends! They were all wonderful.  They guided me and told me which questions to ask...both of pump companies and of myself.

How much insulin did we need?

Well back then my son was only 5 and I was throwing out insulin on a regular basis so reservoir size wasn’t much of a concern. I would only fill as much as we would need between site changes.

Did we need reminders?

Heck yes! I had two young children and was very active in their lives.  There was no such thing as a continuous glucose monitor so I was up at all hours testing, correcting, and treating.  I had trouble remembering my name. I desperately needed a reminder of things like site changes and missed boluses.

Did we need more than one basal pattern?

Granted my son wasn’t working shifts at that point in his life but he was beginning his school career.  That meant gym days and sleep in days and hours upon hours of outside play days.  A pump that could switch gears and change patterns based on the day of the week was a definite benefit.

My son was 5 when I began researching his first insulin pump.  He needed a pump that would administer tiny amounts of insulin…much smaller than he would ever use now. That was 15 years ago however, now his needs have changed a lot.

Fifteen years later…

My son still needs reminders. He hates carrying anything extra so the more compact the pump the better  He works shifts and is up at odd hours.  A pump that makes basal switches like his very first pump did would be ideal.  He uses a lot more insulin at 20 than he did when he was 5.  A 300 unit reservoir is a must.

This is 2018 however and not 2003.  He can no longer choose a Roche pump or even the AccuChek brand.  He can’t get a new Cozmo because they left the market one insulin pump life ago.  He likes his Animas pump but that is now out of warranty. He is left with two choices…sort of.

He could try an OmniPod but he really doesn’t like them. Yes, he has seen them.  He knows that they are much smaller but they aren’t for him.

That leaves him with a Medtronic pump.  He doesn’t want that either.  It also doesn’t work with the Dexcom that he plans to use for work.

Neither pump fits his lifestyle.  Neither of these insulin pumps have all of the features that he wants and needs.

What does this mean for my son?

It means that he waits.  He still has a working Animas pump and cartridges.  He has two old Cozmo insulin pumps and a few boxes of old cartridges for them.  He won’t rush to get a new insulin pump.  He will make do for the moment and wait for there to be more choices on the market.

Everyone who lives with diabetes deserves choice.

No two people with diabetes are the same.  Even the same person with diabetes will have different needs in an insulin pump over time,  This is why they need choice. Diabetes is not a one size fits all disease. Every person needs to tailor their care to fit their life at that point in time.

As a wise person with diabetes once said…”Having diabetes is not my choice.  How to manage it should be.”

As of 2019, there is another insulin pump available to the Canadian market. The Tandem t:slimX2 is available for purchase and an insulin pump by Yspo Med has also been approved but is currently not being sold.

Check out our easy to use ebook. It helps you to decide which pump is best for you and what questions to ask your local reps. 

Disability Tax Credit…What now?

Disability Tax Credit next steps for people with diabetes

Last week, CRA decided to reverse its policy on adults living with Type 1 diabetes and the Disability Tax Credit. This probably has many people wondering..what now?? Here are a few next steps for adults living with type 1.

If you were rejected after May of 201 you haven’t applied yet but want to

For those who haven’t yet filled out an application, you can now do so with some confidence in approval. If you live with type 1 diabetes and are intensively managing your diabetes, then you could qualify. 

Take the Disability Tax Credit Quiz here.

As per before May 2017, you will have to show the time you spent.  That time will have to be more than 14 hours per week.  It cannot include time spent on exercise, carb counting or recovering from a low.

See how much time you do spend on allowable tasks using our workbook.

Follow the Disability Advisory’s Committee’s actions and calls for action.

The Disability Advisory Committee is made up of professionals and advocates.  They will be working to see the DTC fairly applied to all qualifying individuals.

If you are interested in seeing the credit properly reflect the needs of Canadians and more specifically, Canadians with type 1 diabetes, I would suggest that you follow the activities of this committee. They will be looking for submissions and information from Canadians.  Send in your letters and continue to help them inform Ottawa of why people with diabetes who intensively manage their diabetes qualify for this credit.

Read the Senate Committee’s Recommedations here.

Keep the pressure on your MPs.

Make sure that your MP understands that the Liberal government’s recent actions surrounding the Disability Tax Credit are not acceptable.  Let them know that we do not appreciate being lied to.  Ensure that they understand what is involved in diabetes care on a daily basis.  Work to educate them on how people with type 1 diabetes spend over 14 hours on life sustaining therapy.

If you have any more questions or would like someone to review your application before submitting it to CRA for approval, I am always just an email away!

If you are unsure how to fill out your Disability Tax Credit application, our eBook will guide you through the process.

Why November 14th is Special

Banting birthday

November 14th is  World Diabetes Day.  Those who live with diabetes often remark that every day is diabetes day! That is true but November 14th is special.

The 14th is the day that Sir Frederick Banting was born. For those who don’t know, Banting was a Canadian born medical scientist.  He received the Nobel prize for his work isolating insulin for therapeutic use with his colleague Dr. Charles Best.  He is the reason that my son is alive and thriving today.

Before 1922, a person with Type 1 diabetes was not expected to live long. The only way for them to survive was on very strict diets and those diets often left them malnourished.  Injected insulin came along and changed that.

The incredible before and after image of Leonard Thompson shows us just how dramatic of an impact insulin had on the lives of those living with diabetes.

From https://www.trumanlibrary.org/histday/insulin/impact.html

While my own son wasn’t as emaciated as poor young Leonard. He was gaunt and skeletal before he was diagnosed. My youngest child had always been a thin child. He had been sick but seeing him teetering in the bathroom after he began to receive insulin sent me into shock,however. His skin was hanging off of his tiny body and it had happened so quickly.

Thankfully on November 14, 1891 a man was born who would find this miracle elixir.  He would discover a way for my child, and millions like him, to receive the insulin that they were lacking in their own bodies. Dr. Banting gave them their lives back.  He gave parents back their children.

Those of us who use insulin, no that it is not a magic pill. We understand that it must be respected.  People living with diabetes quickly learn how the smallest doses of insulin can have life-threatening consequences. Despite the risk, the reward is incredible.  We have our children, our partners, and our friends.  They thrive, contribute and enrich our lives.

On this day we say “Happy Birthday Dr. Banting!! Thank you so very, very much for giving us this incredible gift of life.”

Six things not to say to parents of children with diabetes

things you dont say to a parent of a child with diabetesPeople generally mean well but sadly many just don’t think before they open their mouths.  I therefore thought that it might be a good idea to create a little list for them of thing that you really should NOT ever NEVER say to parents of children with diabetes. Consider it a personal service announcement if you will…

My cat had diabetes

Really? Seriously? Because we know that you injecting your cat’s fur with insulin is really identical to chasing a toddler around the room with a syringe,  pinning them down and explaining that you are stabbing them for the fourth time today because you love them.  Yes, I am sure they are exactly the same.

Yes, there was an eye roll here.

My great-aunt Thelma died of diabetes

Thank you.  I needed to hear that.  I have guilt on top of guilt about not protecting my child from this disease and you tell me that your 90 year old aunt died because of diabetes?

Odds are that she had Type 2 diabetes and at 90…well her odds weren’t the greatest for lasting long anyway but yeah, I can see where I needed to know this.

This is why parents of children with diabetes have bruises on their heads. They spend a lot of time banging it against a wall in frustration. .

Don’t worry. I am sure that your child will grow out of it.

The odds of my child outgrowing their diabetes are lot  less likely than as you overcoming your ignorance of what type 1 diabetes really is.

Nope, growing out of diabetes is not an option.  My child’s pancreas is just no longer doing its job.  We have tried everything we could to revive it but its dead. Gone. No functioning beta cells to produce insulin.  No hope.

On the upside, I would really encourage you to do a bit of Googling or even ask some questions of me and then listen.  Truly listen to what I will tell you and you might be surprised at what you can learn. Your ignorance can be cured!

Perhaps if you hadn’t given your child so much sugar, then he/she wouldn’t have gotten diabetes.

Perhaps if you had not thought that they said “trains” when they were handing out “brains” and decided that you didn’t want to go for a ride, you would have a bit more of a clue.

Having a child with diabetes brings enough guilt.  I fret over what I could have done. I berate my faulty gene pool for allowing this to happen to my baby. Despite these things, I did not cause my child to develop diabetes. What my child ate had nothing to do with his diagnosis.  Really.

Would she prefer a diabetic chocolate?

Eeeekkkk!! Run! Fast! Actually if you eat many of those chocolates you will have to run fast–to the washroom.  Many diabetic candies are filled with sugar alcohols that can cause diarrhea.

Thankfully, my child is able to balance insulin injections with food intake so regular candy is just fine.  We do appreciate you trying though.

Perhaps you may want to relook at how many of those candies you have as well.  I kid you not.  They are nasty!

Is their diabetes under control?

Control? What is that???  A parent of a child with type 1 diabetes is trying to keep a blood sugar fluctuation of .54grams per liter on a constant basis despite over 25 influencing factors trying to mess with things.   Imagine that…trying to maintain a balance of less than one gram of sugar with the influence of stress, food, exercise and 20+ other things!  Can you see why  as parents we simply celebrate when they get even two readings in range?

It’s a big deal.  Diabetes is a really complicated disease.  Most parents of children with diabetes are doing their very best to balance allowing their child to be a normal kid and trying desperately to manage blood sugar levels so that their children feel healthy.  It is a huge challenge.

Parents of children with diabetes appreciate when you care.  Really we do, but please, please, please, think before you speak!

There are certain things that you really truly should not say to parents of children with diabetes.  Offer them a smile, a sympathetic ear, a kind word even.  Honestly, they are much more appreciated.

Do you know the signs of diabetes?  We now have a great download to show you the symptoms of high and low blood sugar levels

9/11 and Diabetes Created New Concerns

Remember 9/11

This post was originally written in 2012.  The sentiments remain the same. 9/11 was horrible.  When you live with diabetes, 9/11 brought out fears and concerns that you would never previously have considered…

September 11, 2001.  Is there any adult in North America who does not remember where they were on that fateful morning?

I  had left my house early to drive to the airport 2.5 hours away to pick up my grandmother who was coming to visit from the other side of the country.  My oldest son was in school and my youngest was with me for the ride.

I stopped to do a bit of shopping and was looking at paper towels when my cell phone rang. I was told  “A plane has hit one of the towers in New York. There has been a terrorist attack.”   It made no sense to me and I didn’t believe it.  There had to be a mistake so I continued my shopping  before the next leg of my trip.

A few minutes later my phone rang a second time.  This time it was a woman from Air Canada who said,  “We have your grandmother here.  The plane can’t fly her  because all air traffic has been grounded.  We will be putting her on a boat and you can meet her tomorrow morning.”

What? The terrorist attack was real? Planes grounded?  I was shocked to the core as  I spoke to my grandmother who was in great spirits and excited to experience an Atlantic Ocean ferry boat crossing.  We  headed home and like many others, I alternated between being glued to the tv and checking my computer for updates from friends and family.

I had recently found an online support group  for parents of children with diabetes. The people there had not only become my lifeline, but also my family.  We were frantic to hear from people that we “knew” living and working near the towers in New York.

I had a cousin who was an NYC police officer. I had to find out if he was working that day or safe with his family on Long Island. Another cousin was due to go to traffic court that day in one of the Towers and I wondered if he went before the collapse? It was a day of chaos, fear and some relief.

By the end of the day, everyone was accounted for.  There were a lot of prayers for those lost as well as those who made it out alive.  As the dust settled–figuratively and literally, a new fear began to permeate.  I live on an island in the middle of the Atlantic Ocean and can easily be cut off from the rest of the world–the rest of my family.

More importantly, if we were cut off how would I get insulin or diabetes supplies? My youngest son relies on insulin to live.  What if we couldn’t get it as easily anymore? How would I keep him alive?  What if the terrorist attacks continued? Would they target pharmaceutical factories? Could I feed him no or low carb foods? Would he be okay? I could feel the panic welling.

I wasn’t alone in my concerns.   Other friends with children with diabetes were thinking similar thoughts but some were much more resourceful than me.  One friend investigated getting insulin from rabbits to use for her child.

Thankfully we never had to be concerned with any of those fears coming to pass.   My grandmother is now passed on.  Each year, we all continue to  remember exactly where we  were on that day and we say an extra prayer.

For those of us living with diabetes, we give an extra pause.  We remain grateful for access to the supplies that keep our loved ones alive.  It is oddly funny however that once diabetes enters your life, it permeates everything–even memories of disasters.

The 8 things that diabetes has taught me… A satirical look at diabetes myths

8 things diabetes has taught me Diabetes Advocacy

I was scrolling back through old blog posts and came across a  post from 2011 titled “What I have learned“.  The title made me curious so I reread it.  It was an interesting post, but it only listed five things so I thought I would share the original list and add in a few more things.  So now, here are the 8 things that diabetes has taught me….

Diabetes has taught me that it is all my fault.

baby bottle diabetes advocacy

I have two children. I breastfed both of them but one of them received his mother’s milk for longer than the other.  One of them went on soy formula earlier than his brother.  That one is, of course, the child who developed Type 1 diabetes.

It has to be my fault that my son has type 1 diabetes. “Everyone” says that only breastmilk could have prevented this.

Learn more about parent guilt here.

Diabetes has taught me that I fed my child too many sweets.

Yes, the child who prefers cantaloupe to oatmeal cookies and was once caught stealing strawberries because they were “so cute”, was fed too many chocolate bars as a baby.

Fruit is the same as chocolate right? A banana and a chocolate bar are exactly the same right?  They are sweet I guess so they must both cause diabetes.

Type 1 Diabetes is NOT caused by eating too much sugar. Learn the symptoms here.

Diabetes has taught me that my two year old must have spent his entire life as a couch potato.

exercising Diabetes Advocacy

Well, he was a great sleeper until his diabetes diagnosis.  He napped regularly, went to bed early and slept through the night much sooner than his older brother.  He did watch 20 minutes of TV per day when he was a bit older and wasn’t chasing after his brother or riding his toys around the house and yard.

Learn more about Diabetes and Exercise here.

I have learned that my son has the really bad kind of diabetes.

via GIPHY

Life with diabetes has taught me that there is a good kind and a bad kind but my son must have the really bad kind because he wears an insulin pump.

After 17+ years of life with diabetes, I have yet to meet someone with the good kind of diabetes but I am sure that whomever they are, they are pretty happy with that diagnosis.

Diabetes is scary, deadly and serious but never good.

I have learned that his insulin pump does all of the work in managing my son’s diabetes.

cgm and pump

Yes, we just push a button and let ‘er go! If only it was that easy. No blood tests, carb counts, highs or lows…ah wouldn’t it be amazing! Perhaps when the artificial pancreas is available this will be true.

I have learned that my son is lucky to have been diagnosed so young because he can grow out of it.

wearing an insulin pump

This is news to the many adults who are now living 20, 30 and 50+ years with diabetes.  I guess they haven’t really grown up yet.  My son is 19, outweighs me and is taller than me but in many ways he still isn’t completely grown up either. Perhaps there is still hope for him too!

I have learned that diabetes is no big deal.

Everyone’s grandmother or great uncle has had diabetes and died from it but diabetes is not a big deal.  The secret is to avoid that sugar! Its evil, except for sometimes when you have to have a chocolate bar because your sugar is high or something right?

I have also learned that there is no cure for stupid.

diabetes is hard Diabetes Advocacy

When you live with diabetes–directly or as a caregiver, you will run across people who are ignorant about the disease. Many will believe that every one of the things that I have listed above were in fact true. (No sorry this post was entirely satire).

I was clueless before my son was diagnosed with diabetes.  Some of those people that you run into will be kind and willing to learn.  They will be open to listen and want to truly understand what you are going through.

Then there are the other people.  Those are the people who will share with you how Okra can cure your diabetes.  They will tell your six year old to take care of themselves or they will lose a leg like Aunt Eugenie.  These people will cut you short when you try to explain how an insulin pump works.  

These are the people that you should feel sorry for.  Their minds are closed and they have a fatal disease called ignorance.  There is a cure for ignorance, its called education but they are further hindered by a lethal dose of stupid.  Sadly there is just no cure for stupid.

What is the most riddiculous thing someone has said you to about your diabetes? Share with us in the comments.

If you don’t know much about diabetes, learn the facts here.

What would happen if people with diabetes weren’t constantly subjected to blame and criticism?

supporting people with diabetes Diabetes Advocacy

If you are diagnosed with cancer, you are usually met with sympathy and compassion.  A person diagnosed with heart disease is met with care and concern.  When people find out someone has diabetes, the first reaction tends to be blame.  

What did the person with diabetes do to cause this condition? What have they done to have an A1c that high? Have you ever wondered what would happen if people with diabetes weren’t constantly subjected to blame and criticism?

What happens when you are diagnosed with cancer or heart disease?

choose compassion not blame
Choose compassion not blame

Think about this….a woman goes into her doctor’s office and is told that she has breast cancer. What does her doctor do after breaking this news to her? The doctor most likely offers support and treatment options.

Can you picture how her friends and family will react? Her family will offer to assist her in any way that they can.  Everyone offers sympathy and hope.

Next, imagine what happens when a man walks into his doctor’s office and told that he has congestive heart failure.  His doctor offers treatment suggestions and hope. His family offers support and understanding.

It isn’t the same when you are diagnosed with diabetes.

diabetes is hard Diabetes Advocacy

Now consider what happens when diabetes is the diagnosis…. A family walks into a doctor’s office.  Their son hasn’t been himself lately.  He is lethargic.  He is drinking everything in the house and consequently is suddenly having accidents and can’t seem to hold his water.  They know that something is definitely off.

The doctor tells them that their son has Type 1 diabetes. She asks if there is a family history of diabetes? She gives them a brief rundown of what diabetes is.  The doctor provides a prescription for things like insulin, syringes, and blood glucose test strips.  No treatment options are discussed. The doctor then tells the family that they will have to go immediately to a place called “diabetes education” for a bit more training.

The stunned family is pushed out of the door and heads to the next office.  They are reeling.  They don’t understand what they have been told.  The poor family knew nothing about diabetes before this day.  It was something that came from eating too much sugar but they didn’t feed their son sugar…did they?

The family learns that they will have to regularly hurt their child to keep him alive.

boy with type 1 diabetes Diabetes Advocacy

The family has been told that they will have to inject their child with a syringe multiple times per day.  The doctor has told them that if their son gets too much insulin, it is an emergency and he could pass out and die.  They have been told that he currently has too much sugar in his body and he needs more insulin or he may go into a coma and die.

The doctor did ask them if there was a family history of diabetes. Now they wonder again if they caused this.  Did they do something wrong? Did they pass on faulty genes to their baby?

In a few short hours they are given a crash course in diabetes.

diabetes supplies Diabetes Advocacy

This newly diagnosed family goes to diabetes education and learns all they need to know about diabetes in a few hours.  They are told about carbohydrates, insulin, exercise and many more terms that are floating around meaninglessly in their heads.  The family is overwhelmed and exhausted.

As the news of the young boy’s diagnosis reaches family and friends. Well-meaning friends reach out and contact the family  Their aunt tells them that their great-uncle had diabetes…the bad kind….he died.  A neighbourhood child asks the son if diabetes is contagious because he is worried that he might “catch it” and then have to have needles too!

The difference when the diagnosis is diabetes.

blood ketone meter Diabetes Advocacy

Can you see the difference in these three scenarios? In each incidence, the diagnosis is earth-shattering.  The people involved in all three stories are forever changed but in the first two cases, they are met with compassion and care rather than being the butt of jokes.  When diagnosed with something other than diabetes, the individual does not seem to have to educate or correct misconceptions from family and friends.

What if there was no difference.

supporting people with diabetes Diabetes Advocacy

Now imagine this…the same family meets with their doctor.  She tells them that their son has diabetes.  It is a serious life-threatening disease but working together, they will ensure that he will live a long and healthy life.  She tells them about amazing treatment options and offers them numerous online resources.

A diabetes team comes in, bringing with them another family who also has a child with diabetes.  This family will act as mentors for them.  The parents will be able to share their fears and experiences and the children will be able to also share with each other.  They will guide them to other supports.  The family knows that they are not alone. They know that they will make it through.

What if families were offered support instead of medical advice?

supporting people with diabetes Diabetes Advocacy

Further, imagine this family going home after insulin guidelines are established, but they don’t come home to judgment and fear. Instead, this family walks in the door to find that their neighbours have prepared meals with carb counts so that Mom and Dad can focus on their family.  They see that Grandma has arrived to help out and learn diabetes care so that their son can still spend his summers with her.

What if a diabetes diagnosis was met with kindness and understanding?

exercising Diabetes Advocacy

The is way diabetes should be handled–with compassion and care.  It does happen.  There are some incredible diabetes teams out there.  There are amazing people who understand and don’t judge.

Wouldn’t it be wonderful if this was the rule not the exception? Can you imagine if there were no more diabetes jokes? No more comments about Great Aunt Sarah dying from the bad kind of diabetes?  What if parents no longer threatened their children with “if you eat one more of those candies you are going to get diabetes!”

That would be compassion in its purest form.  It would allow families and individuals to deal with this new way of life with much more support and love.

Together we can make it happen.

holding hands Diabetes Advocacy

It can happen but it takes work.  We must continue to educate the general public.  Educators and doctors must continue to offer compassion and support.  It is important that those of us who live with diabetes constantly remain available and understanding towards those who are just learning about life with diabetes. Together we will create more compassionate resources for those with diabetes until there is a cure.

Join our online community for more support and learning about life with diabetes.

Diabetes is not a joke. Diabetes kills.

candleDiabetes is not a joke. Diabetes is not about weight or junk food.  This disease requires those living with it to walk a fine line…too much or too little insulin can have catastrophic ramifications. The fear is real and justified.  Diabetes kills. 

The article below was originally published on May 11, 2016.  It was exceptionally hard to write.  As a parent of a child with diabetes, we know that diabetes is deadly but we hope it will never kill one of our own.  When it does….well your world is shaken to the core and is never the same again. 

I think of this family daily.  I can only begin to imagine their pain and the pain of others who have also lost their loved ones to this disease.  We will never forget. We will continue to work towards a cure. 

In the diabetes online community, the appearance of a blue candle suggests that someone has lost their life to diabetes.  Its a time of sorrow and a time during which we hug our loved ones a little closer. It is also a  time to test a little more often before we allow the memory to fade and we move on.

Last week I received a message that made my heart stop.

I headed over to a friend’s Facebook page to verify what I had read.

blue-candleThere was  the blue candle.

My breathing stopped.

I read her post.

The tears began to flow.

Through the tears I sent a message to my friend.  She confirmed my worst fears with her words “I just want him back.”

“Oh, I wish I could bring him back for you!”

That’s what I replied through the tears.  I was numb.  The blue candle was no longer for a stranger who could have been my child.  This candle was for a child that I had watched grow through our online communications. This was happening to a friend who had been there for me through highs and lows of  16 years with diabetes.  I wished I could bring her son back to her.  The pain was too much for me and  I couldn’t begin to imagine how she was feeling. It hurt too much to try.

No mother should bury their child. We shouldn’t have to mourn for those who have yet to have fully enjoyed their lives. There is something fundamentally wrong with that. It makes our hearts ache.

When we hear of a child lost, we hurt but we push it away. It happens to other people.  It is horrible but it happens to other people.  But what about when it doesn’t? What about when it hits your family?

Last week it hit my family and the pain is still fresh.

15 +years ago, I became connected to the internet.  I reached out to find “parents of children with diabetes”.  Instead I found an information email list, or so I thought but what I really found was a family.

I found people, some that I would meet, some that I would talk to on the phone, and some that I would never know beyond the keystrokes of a keyboard. All of them would become family.  They would be by my side through the good times and the bad.  They would understand diabetes –its peaks and valleys but they would also understand me.  This incredible online community would be there for me at all hours from around the globe.  They were Friends for Life–they were family.

Over the years, some of those connections have been neglected.  Our children have grown and some of  our children have become parents themselves.  We have watched each other’s lives on Facebook and occasionally we wish each other well.

Other connections remain strong. We reach out regularly.  We have remained in contact and fondly look back on where we have been.

No matter whether we are close or drifted, when tragedy strikes we are all one big family again. One family united by pain–sobbing with each other.  A family holding each other in virtual hugs through real tears.

Tragedy isn’t supposed to hit us. Not a direct hit  like this one.  Diabetes in to supposed to take a child that we “knew” and watched grow but it has.  The pain is unbearable.

I know that the pain will fade for some of us.  It will dull a little for my friend but that missing piece will never be replaced.  I am lucky.  In 16 years, my son has stayed quite healthy.  In all of this time, I have only known of one person–whom I had met, spoken with, and been friends with, who had died because of diabetes but now there are two. Those are two too many.

I don’t want there to be any more.  There must be a cure.  People with diabetes deserve better access to treatments.  We need more awareness. We need more…

Those of us in the diabetes community  will continue to work harder. Some people will bike more while others will walk more. We will all advocate louder.

Our hope will remain.

We came together because of diabetes but we have stayed together because of  incredible friendships that knows no borders.  I pray that one day we will celebrate a life without diabetes.  Until then, hug your loved one a little closer today.  Send prayers and strength to the families who have lost someone during our fight. I am grateful to each of you who have become such an important part of my life.