Tag Archives: diabetes advocacy

Diabetes is an exceptionally costly disease

Its Day 2 of Diabetes Blog week and today we look at the high costs of diabetes care.  Diabetes takes a toll on the person living with the disease, on their relationships and on their wallets. Diabetes is an exceptionally costly disease.

diabetes is costlyFrom the moment the diagnosis comes in, your world begins to shatter.  Quickly you learn that the days of grabbing a snack on the run or leaving the house with just your keys are over.

Diabetes means that your brain must constantly be on.  You must always be thinking about carb counts, blood glucose levels, insulin on board, and a thousand other factors that were previously irrelevant to you.  The mental exhaustion is real.  The toll on the person with diabetes, their caregivers and those around them is significant.

When living with diabetes, it is vital to have supports and to use them! When a friend or partner offers to help, accept it. It doesn’t matter if they do things a little differently.  If no one dies, then it’s a win.  Accept the help.  Take a break. You need it.

Unfortunately it is not just the emotional and physical aspects of diabetes care that can be taxing.  Diabetes is an exceptionally costly disease when it comes to your finances as well.  If you don’t have excellent  insurance coverage, the stresses of life with diabetes are magnified a thousand times over.

For those of us living in Canada, there are a few benefits. First, we don’t have the absolutely ridiculously high insulin costs that our friends to the south are being subjected to.  My son was pleasantly surprised when he was forced to buy his first vial of insulin and it cost him less than $40.

$40 for a person who is in school and working part-time is enough of a cost however.  Thankfully his expense is temporary.  He has two options for coverage. He is trying to get back on his father’s insurance because he is in school.  If that becomes more of a hassle than it is worth, he can still apply for the provincial drug plan to help offset the costs of diabetes supplies.

If you don’t have those options however, diabetes is exceptionally costly.  In February of 2015, I sat down and figured out exactly how costly it would be for me to have Type 1 diabetes and use an insulin pump.   I don’t have private health care coverage, I am too old for the current provincial insulin pump program and I wouldn’t qualify for much of a rebate through our provincial program because of income.

For me to use a sensor augmented insulin pump to maintain my diabetes care, in 2015, I established that it would cost me approximately $14,500 per year.  That is over $1200 per MONTH.  Obviously this total would be drastically reduced if I just wanted to use a syringe and injections.  Either way, I would still require insulin, syringes, test strips, ketone strips, alcohol swabs and glucose tablets to just name a few items to stay alive.

Can you imagine being a young adult and having to save, at minimum, the amount of a car payment just to cover your expenses? What if you wanted to have a family but you have diabetes? You need to be able to afford diapers, clothes, food and diabetes supplies for yourself.  Even those who no longer have children are not immune.  No matter what your age, you carry the need to pay for life-sustaining medical equipment for as long as you live.  That must be exhausting.

There is no cure. There is no end in sight.  All those of us who love people with diabetes can do is continue to offer emotional support.  We can continue to assist with care and those of us in the advocacy realm can continue to ask governments and insurance companies to provide greater help.  Diabetes is an exceptionally costly disease. We must do all we can to help our loved ones deal with it.

Which Liberal Government?

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.

liberalsI 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.

*http://www.thetelegram.com/News/Local/2016-04-17/article-4500650/Changes-coming-to-provincial-drug-program/1

**https://www.thestar.com/news/canada/2008/03/18/average_hospital_stay_costs_nearly_7000_study.html

 

Why do you Blog…Diabetes Blog Week Day 1

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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.

Lace up For Diabetes

#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…

#LaceUp4Diabetes
#LaceUp4Diabetes

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.

Dear John and Jane Public

Dear John and Jane Public,

I understand that you probably know very little about diabetes.  Before March 17, 2000 I was just as ignorant.  Not knowing is okay. There are many things that I don’t know about but I am always willing to learn.  I wish that more of you were as well.

If you open your mind and learn, I am hoping that you will also begin to have more empathy and feel less inclined to point blame at the victims.  For some reason, a lot of the general public thinks that it is okay to blame people with diabetes for their condition.  it doesn’t matter if they are 2 or 92, many people feel that if they have diabetes they must have done something to make it happen.

In making that assumption you are hurting people like me, my child and many others who did nothing more than be born with genes that led their bodies to attack themselves.

You would think that after 15 years I would have a tough skin–I do.  I am used to well meaning people passing judgments on food that my child can or cannot eat.  I am used to people telling me that they understand my worries because their grandmother developed diabetes last year at  age 75.  I am used to people saying that my child must have it really bad because he uses an insulin pump.

I have learned to calmly tell those kind health care providers who ask if he will outgrow it that, no, he can’t grow himself a new lung and he won’t grow a functioning pancreas any time soon but thanks for asking!  I have learned to smile when I watch a TV show that suggests that they can track a missing person through the GPS on their insulin pump.  These are silly things that just get filed under “Things you deal with when you live with diabetes”.

John. Jane.  I do have to ask you one thing though.  You see, my skin has thickened. I know that I did not cause my son’s diabetes. He never had chocolate bars or was force fed jube jubes as a tot.  He had breast milk and few processed foods but that was not enough to protect him from developing diabetes.  His body still failed him.  It attacked himself leaving him terribly sick and almost killing him.

My genes may have played a role in this attack.  I have no family history of Type 1 diabetes and very little of Type 2 but I will accept that somewhere in my genetic makeup, there may have been some code that when passed onto his tiny body, created the havoc that led to his diagnosis.

I will accept that my ignorance of illnesses like diabetes and my faith in the medical community delayed my son getting treatment much later than he should have.  I believed the ER doctor who examined him and told me that he just had the flu.  That misdiagnosis almost cost my son his life but I will take the blame for listening to him even for a short while.

As you can see, I don’t need you to add to my guilt with nonsense. There are enough real contributors to keep me feeling horrible but they don’t.  Keeping my son alive and healthy for the past 15 years have been a greater priority.  It has been more important to learn about his disease, get him the best medical treatment, and teach him how to take care of himself than wallow in guilt and blame.

So John and Jane, what I am asking from you is for a bit more understanding.  You don’t have to know what my life has been like. You don’t have to know what my son deals with every minute of every day.  If you would like to learn more, please ask me and I will give you as much information as you want.  What you do can for me however, is to think before you speak.  You can think before you laugh at jokes about people getting diabetes.  You can think before you spread false information.

Please do not use scare tactics and tell your children that if they have one more candy out of the dish that they will get diabetes.  This is no more likely than your eight year old dropping dead of a heart attack because they had one more french fry.  You are right to teach your child the importance of healthy eating.  You are right to tell them how important eating balanced meals and staying active are but don’t make them think that the child in their classroom is responsible for her diabetes because she ate too much candy.  It isn’t fair to your child who may not want to be friends with someone who has such poor willpower,and it is not fair to that student who has enough going on in her body to deal with and could really use the support of friends.

Please Mr. and Mrs. Public, do not tell your friends about people getting diabetes because they are fat, lazy or because their parents didn’t care enough to stop them from eating junk. You may be sitting in a room with a parent whose child has diabetes.  That parent has struggled to make sure that their son or daughter has led a “normal” life while dealing with 3am low blood glucose levels that could kill their child.  That parent may have spent the past week worried about how their son would handle the pressures of graduation ceremonies and after parties while managing their diabetes care on their own.

John and Jane Public, I know that you cannot begin to understand what my life has been like for the past 15 years.  I know that you have no idea as to what my son deals with each day.  I don’t know what its like to deal with  a child with asthma or crohn’s disease but I would never blame the child or the parents for the disease.  I would listen and learn.  I would empathize and offer the little support that I could.

I don’t expect you to learn about diabetes.  I am not asking you to.  I will ignore most of your ignorant comments but if you let me, I will try to educate you a bit as well.  I know too much about diabetes.  I have spent the last 15 years immersed  in its world.  Don’t feel bad for me. I have met some amazing people and I have learned a lot.  My son doesn’t need your pity either. He is quite happy just leading his life but when you see his pump or watch him lance his finger remember…

Yes it hurts but it keeps him alive.

Yes, you could do it if you had to and hopefully you will never have to.

Yes, you should stay away from that junk food and exercise more.  It may or may not stop you from developing diabetes but either way, you will feel better.

Yes, he does have the bad kind of diabetes because there is no good kind.

Yes, its okay to be thankful that you don’t have to experience any of this….I really wish my family didn’t have to either but we do so please, think before you speak, and maybe, just maybe, take the time to learn about this disease that is impacting more and more families every day.

Sincerely;

A  tired mother of a young man with Type 1 diabetes.

Loving created by my dear friend Cheryl D

Loving created by my dear friend Cheryl D

 

I Wish People Knew that Diabetes…Day!

iwishpeopleknewthatdiabetes

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!

 

Choice. YDMV

Choice.

Your Diabetes May Vary.

Everyone is different.

What works for me, may not work for you.

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.

Thank you DiabetesInsight.ie
Thank you DiabetesInsight.ie

If its not sexy, how to we make them care?

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. miss-idaho-insulin-pump-instagram-doodle__oPt

The Why

Diabetes Advocacy.  Its a simple name for a website that I created so long ago that I honestly can’t remember the exact date. The name happened when my mother told me to name it what it was…a site dedicated to advocating for people with diabetes.

An online dictionary defines advocacy as “the act of pleading for, supporting, or recommending”.  For years I have pleaded for changes in various aspects of life with diabetes. I have challenged the federal government in regards to their treatment of people with diabetes who were receiving life sustaining therapy.  I have supported efforts to raise awareness and fight for the rights of children with diabetes in schools.  I have recommended the coverage of insulin and CGM therapy by all provincial health programs in Canada.

Why do I do it? A lot of people ask me that question. Some people think that I do it for the money.  That’s pretty funny since no one pays me. I would love to be paid but I have yet to find a way to have that happen.  Is there fame in the world of diabetes? Yes, a few people seem to recognize my name but I am not a wildly famous superstar.  I am just a woman, a mom, and a partner who occasionally opens her mouth on issues that bother her. A few people assume that I do it for my son.

In part they would be right but I don’t just do it for my son.  Every time I hear from a person with diabetes, no matter what the age, I think of them as someone’s child.  I see my son in them and my heart aches.  There but for the grace of God is my child.

I want to get up in the middle of the night for them to give them a break.  I want to be there for them when they are alone and fearing a low that will leave them vulnerable and in danger. I want them to have a “normal” life with “normal” concerns like what will I have for supper not how will I pay for my test strips this month.  I want them all to live their lives to the fullest not live their lives to the fullest with diabetes. I want to wave a wand and make that last part of the sentence disappear for each and every one of them….including my son.

I am lucky.  People share their stories with me.  I hear about your triumphs and your pain.  I cry with each of you and celebrate your victories as well.  My son is very relaxed about his life with diabetes.  He knows that his momma’s got his back but in covering his back, I hope to also cover many others as well.

Why do I do this? Why do I take on challenges for strangers with diabetes? Why do I take my time and resources to share information, create webcasts, and take part in conferences? Because not everyone can but everyone deserves a voice. I do it because I want to fix it for all of you and it kills me that I can’t.  I want my children to know that I tried for them…and for all of the other children out there who couldn’t do it alone. It really is that simple.

The momma bear in me makes me do it.
The momma bear in me makes me do it.

And then they grow up

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.

first day of school 2003