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

FIFTY YEARS with diabetes!

Over the weekend I was sent a link to a blog post.  That is nothing unusual. I regularly get links to articles on how to cure diabetes, the evils of sugar, and how to deal with my erectile dysfunction.  This article was different however. It was from a man I had met online years ago.

I truly don’t remember how exactly our paths crossed. I have used his online store at times for various diabetes related supplies. I have promoted the things that he does and follow the newsletter that he sends me on occasion. I know that he was helpful in promoting and working on changes to both the Disability Tax Credit and the insulin pump program in Ontario.

Despite all of this, we hadn’t personally connected in quite some time.  I was therefore very pleased when I received a note from him over the weekend.  It turns out this incredible man who lives with diabetes, is now a Certified Diabetes Educator, successful businessman, and a pharmacist, is also celebrating FIFTY years living with diabetes!

Fifty years! Imagine that! What does fifty years with diabetes look like? How much have things changed? He seems to be healthy and thriving.  How has he done it? Was it “easy” for him? Does he have a wonderful support network? What advice does he have?

Tino Montopoli answers those questions and many more in his open letter to people living with diabetes. I encourage you to read it in his entirety.  It will move you. It will surprise you.  And personally his best advice for anyone, living with diabetes or not is “Never lose sight of your family and friends. Don’t be afraid to ask them for help. Follow your heart and passion to do what you want to do. Never let diabetes stop you from following your dreams.” There is so much more that he shares and so much more to inspire you about life as well as life with diabetes.

Thank you so much for sharing Tino! Please go to Diabetes Depot to read his complete post and if you are looking for a great source for diabetes supplies, check them out as well!

Tino is presented Joslin’s 50 year medal by Dr. Bruce Perkins