Three Things that Raise My Dander

Diabetes Blog Week
Its Diabetes Blog week once again and I am so excited to be able to participate once again!  Today’s topic comes for Kim of Texting my Pancreas and asks us to discuss diabetes issues that get us really fired up!

Since I began my website many years ago, the issues that I have been passionate about have grown but have always retained one common thread–improving the lives of people living with diabetes.  There have been some successes and there is still a long way to go but watching the diabetes community come together and create change has been the best part of the journey.

The first issue that got my dander up was the inequity I saw years ago in the way people with diabetes were treated when it came to the Disability Tax Credit.  As I worked on this issue, I saw that those who were approved for the credit were people who were able to stand up to the government and were willing to fight for this issue. If you were uncertain or did not know how to take on this battle, you would be denied the credit while your neighbor was approved.  There seemed to be no other logic behind how this credit was applied to people living with diabetes.
With a lot of help from other people living with diabetes and a fabulous mentor, I was able to see this issue change dramatically. Fairness was obtained and change happened to the legislation surrounding this issue. I was very proud of all the works that was done here but there were still more issues to tackle.

As I learned about diabetes and became more involved in the world of advocacy, I came to realize how difficult it was to get an insulin pump if you didn’t have the very best insurance coverage.  Once again I was outraged.  Why should it matter what sort of job you have or where you work to get the best possible care for your diabetes?

Since I first began dealing with this issue, things have changed.  Most provinces in Canada now offer provincial health care coverage for insulin pumps and supplies for all children under the age of 18.  That was great but what about older children who are just starting out in the workforce? Some provinces decided to give these young adults until age 25 to get better insurance…some provinces didn’t.  Today, I continue to work with others to see that all people living with diabetes have access to the best devices available to manage their diabetes care regardless of age. This means that I would like all governments to cover insulin pumps, supplies and Continuous Glucose Monitors for people with diabetes regardless of age.  This will happen in time. I am confident.

No matter what your age or where you live, you deserve access to the very best in medical care.  It is important for governments (and insurance companies) to understand the broad sweeping benefits that come from best care practices. If a person with diabetes is able to maintain their bg control to a close to normal range and they are able to anticipate highs and lows with the aid of CGM technology they are better able to perform at work (which means less down time and more money paid to the government in terms of personal tax), they are less likely to be in the hospital (costing the government money), and more likely to have a better overall life satisfaction which in turn further leads to increased productivity and once again an increase in taxes paid to governments. The cost outlay is far outweighed by the benefits to the system as a whole.

At the moment, I live in a province that covers insulin pumps for people with Type 1 diabetes until they reach the age of 25. It does not cover CGM technology.  I have less than 9 years to advocate for increased funding to cover all people with diabetes regardless of age.  In 9 years my own son will be in the position of having to make very serious and real choices about his diabetes care. We will see this change–for him and for all of the other adults struggling to maintain their health despite the heavy financial costs.

Because my son is still in school and has had diabetes since before he went to school, the third issue that I am passionate about is that of children with diabetes in schools. This issue has seen major changes since I first began talking about it over 10 years ago.  In BC, we have seen the power of grassroots parent organizations who have pressured the government into changing its policy on children with diabetes in schools.  I have seen many more individual boards and provinces begin to seriously look at the issue of protecting the rights of children with diabetes in schools.

Once again, this is an issue that many parents and children are not able to stand up and voice their concerns about themselves. I felt that it was therefore my job to help them.  I would (and do) speak to parents on how best to tackle their schools and their issues. I work with boards to help them understand what needs to be done to create change that is fair and just to all parties involved. This is a very complex issue here in Canada. Our children are not protected by a disabilities act. They are protected by the voices of their parents and other concerned adults…but these voices are powerful and making a difference.

Advocacy has always been something that I am very passionate about. I have felt a strong need to stand up for those who may not be able to stand up for themselves.  I have worked for the past 14 years to ensure that people living with diabetes are all treated fairly with equal access to education, medical devices and supplies.  This is a long road.  It has seen many battles won and I am proud to be able to continue fighting the war along side many incredible people.


CGMM–Continuous Glucose Monitoring MOTHER!

Later this year it will be time again for me to start looking at new insulin pumps.  It is not something that I am looking forward too because I hate to part with our beloved Cozmo, the Lean Green Pumping Machine and there is just no interesting pumps out there at the moment.  Since the pumps won’t be what attracts me, I began to think about the continuous glucose monitoring part.  Is this something that I should be looking at?

The idea of real time readings has an appeal.  The concept of still having some general data when my son fails to test has greater appeal.  The fact of yet another gadget attached to my son 24/7 has no appeal to either of us but safety is my greatest concern.

I thought about being able to sleep at night in relative comfort.  The Continuous sensor would give me an idea of whether or not sleep was an option for that night.  This really appealed to me until I thought about it a little more. Currently we are using a CGMM at night–a continuous glucose monitoring Mother.  It works quite well (knock on wood).  My son has never had a seizure.  His guardian angels have always managed to wake me up at just the right time when he was low at night. 

I don’t sleep anyway so perhaps the CGMM is the way to go until he is older and thinking about leaving home. The plus to this system is of course the cost.  I don’t think our provincial plan will cover sensors or a system.  I know my son’s father would not be happy to have to pay for another diabetes expense.  This does not help monitor him during the times that he is away from me, but I have gotten pretty good at setting higher basal rates for when he is gone. 

The more I thought about a CGMS vs CGMM, the more other things began to float through my head.  For over eleven years I have been using the CGMM and thinking I was doing well.  What if a CGMS showed that I was missing a tonne of lows? What if it showed that I was doing a horrible job as a pancreas and putting my son’s life at risk on a regular basis? Instead of alleviating stress, it would increase my stress level (something I really do not need). 

At the moment the Mother system is causing the fine lines around my eyes to deepen.  It sees me fall into bed each night exhausted but knowing that in three hours I will be up again.  It has increased the number of grey hairs that are finding themselves throughout my hair.  The upside? Well I am keeping the cosmetic companies going trying to find just the right creams to hide or erase those fine lines.  I keep the hair product people in business buying hair colors.  My nerves are okay not knowing about the lows that are rebounding thanks to his own glycogen stores. Perhaps a continuous glucose monitoring system is not in our immediate future and the continuous glucose monitoring Mother will continue along just fine.