Summit Diabetes

Earlier this summer, I received an email from a young lady who was embarking on an adventure that looked really interesting. I meant to take a much closer look sooner but the email came in while I was away and then managed to get lost in my inbox.  Today I decided to seek it out again and see what she was up to.


The young lady’s name is Haley Maurice.  She is now 15 and was diagnosed with Type 1 diabetes at the age of 7.  Her plan for this summer was adventurous for any teen but even more exceptional when you remember that she is living with type 1 diabetes.


“On July 16th, my brother Ethan and I will be backpacking 221 miles from Yosemite National Park to the top of the highest peak in the continental United States, Mt. Whitney, to raise funds for JDRF.


We’ll be trekking in this high alpine terrain for an estimated three weeks, conquering over 46,000 ft of elevation gain and venturing deep into the back country of the Sierra Nevada Mountains. It’ll be just us out there, with only two resupply points along the way to pick up more diabetic supplies and food to fuel us for the entire duration of the hike. We’ve been vigorously training and setting up our fundraiser for the past three months and are aspiring to reach our fundraising goal of $1000 per mile ($221,000) for JDRF.”


A few days ago, I hiked a 1.7km trail that has a 500 ft decent.  That was enough of a challenge for me.  I can’t begin to imagine 221 miles and 46,000 feet with blood glucose testing, site changes, insulin adjustments, treating lows, and carrying food and shelter.  I further was not sure how I would feel if it was my child with diabetes doing this.


Silly, of course I know how I would feel. I would be nervous and proud.  I would be terrified of all that could go wrong but would trust in the other sibling to help out in emergencies. I would be proud that my child would take on such an amazing adventure for a good cause.  I am guessing that Haley and Ethan’s parents probably felt much the same way.


In looking at the Summit Diabetes website and exploring some of their social media posts, I see that the two siblings were for the most part successful in their journey. Yesterday they noted…


“We made it!!! 221 miles of hiking from Yosemite to Mount Whitney!


Unfortunately, we didn’t make the top of Whitney as a freak snowstorm nearly froze us to death this morning just a quarter mile from the top.”


What an amazing feat! I am so impressed by these young people. I am impressed by their courage, dedication and stamina.  When Haley contacted me, she was asking for only one thing, for me to share her story and that is what I hope to do here.  Please look at their video, check out their website and the amazing pictures of their adventure.  If you can, also contribute to their goal of raising $1000 for every one mile that they hiked this summer.


Congratulations Haley and Ethan!

Age Shouldn't Matter

Last week, during blog week, I told you about things that get my dander up and make me want to scream from the roof tops until they are fixed. One of those things was access to insulin pumps and supplies. Since the day that I realized that there were more options available to my son than the insulin regimen we were currently on, I was adamant that all people with diabetes should have choice in their treatment options.

People living with diabetes should be able to decide if they want to use Lantus over NPH. They should be able to choose Apirdra over regular insulin.  They should be able to see if a Continuous Glucose Monitor or an insulin pump is for them without having to sell their home. That sounds extreme doesn’t it? Sadly it isn’t.  Despite living in Canada with its socialized medicine, Canadians are still not always able to access the best treatment options for them.  They may not have private health insurance or their insurance may not cover the devices that they desire to use.  The result is that they go without or go to extreme measures to get the medical tools that they desire to keep them healthy. For me, that is not acceptable.

My son began using an insulin pump 11 years ago.  I had wanted a pump for him since the first time I heard of the flexibility that it allowed but financially it was not an option.  His father had medical insurance but insulin pumps were not covered. What changed 11 years ago? My family stepped in and said that they would come together to pay for the pump.  They wanted the very best for my son.  It is a moment that I will never forget.

Over time things have changed thankfully. Provinces have begun to cover insulin pumps–for children.  Those over 18 have had to find good insurance, high paying jobs, go back to injections out of necessity rather than choice or move to Ontario (the first province to cover all people with Type 1 diabetes who wished to use insulin pump therapy).  In my own province of Newfoundland and Labrador, changes have been made as well, the age limit for assistance was moved to 25.

Today my son is 16.  He is heading into his final year of high school and looking at career options. The most important part of his career choice is to find one that is either very high paying or offers great benefits. What he enjoys seems to be second on our list. That is discouraging and gets my dander up.

If a person wishes to use an insulin pump to best control their diabetes care, then they should have that option.  Age, financial status, or occupation should not dictate what type of therapy they can receive.  With this in mind, advocates in provinces like British Columbia have created petitions to ask their government to expand coverage and remove age restrictions. Pensioners are having to go back to injections because their private health care coverage ends at retirement.  Young adults who are beginning careers and new families are having to rethink how they will move forward because of cost constraints brought on by managing their diabetes care
.
This is not right.  Age should not dictate whether you get an insulin pump or not.  Insulin pumps provide just as many benefits to adults as it does to children.  Adults with type 1 diabetes who are using insulin pumps often find shift work much more manageable.  They tend to see less diabetes related down time because they can micro manage their disease with greater ease.  The addition of Continuous Glucose Monitoring systems to their care can help them to anticipate dangerous highs or lows that could have otherwise sent them home for the day.  Increased productivity and work time for people with diabetes has a larger impact on society as well. People living with diabetes who are able to work are able to contribute to the provincial tax coffers through their employable earnings.  They are less likely to have complications or dangerous blood glucose swings that could send them to the hospital.  Our young people with diabetes are able to look at jobs in the province rather than having to move to areas with better pay and better benefits.

The rewards definitely outweigh the costs to the provincial governments and our health care systems. With this in mind, I have created a petition that will ultimately be presented to the government of Newfoundland and Labrador asking that they expand their insulin pump program.

Please consider signing and sharing this petition.  The more voices we have, the stronger we are.  This is a very serious and real issue.  The stories and needs behind the petition are heart breaking.  I have spoken to a government employee who have had to rent out her homes so that she can have extra money to be able to afford her diabetes supplies.  I have listened to medical personnel who have had to rely on financial help from a life partner in order to continue pumping.  I have sat down with members of the police services who pay the equivalent of an extra car payment each month just to keep themselves pumping and healthy.  There are also people who are in minimum wage jobs who have no choice but return to injections after they turn 25 because they just can’t afford to pay for their rent and their insulin pump.

This needs to change. With your help it will. Please support this initiative for all of those who choose to use an insulin pump.

The Bad Kind

The other day, I sat down to begin reading Ginger Vieira’s new book “Dealing with Diabetes Burn-out“.  I had only read the introduction when I wanted to cry.  Why is there so much judgement surrounding diabetes? Why do people living with diabetes feel that they are either good or bad? Well, as Ginger points out, its because there is so much good and bad mentioned when talking about the disease.

Your readings are good or bad.  They are not the result of a carb counting error or a pending illness that you cannot foresee. They are a good reading or a bad one.  The food you eat is either good food or its bad and a diabetic shouldn’t eat it.  Your A1c when you see the doctor is either good or bad.

The constant judgement does not end there. I was listening to a conversation a few weeks ago and quietly cringed as I heard someone mention that a person had diabetes “really bad”.  Another person had mentioned that someone had died because they had the “bad kind of diabetes”.  I wanted to say that there is no good kind!  You can only hope and pray that a person with diabetes has all of the knowledge, supports and tools that they need to care for themselves in the best possible way.  It wasn’t my place to educate at that time.

The good kind I assume, is the kind that is managed by diet and exercise  but is it really that good? You still have to live with guilt for each piece of food that enters your mouth.  You must be constantly wondering when that bullet will hit its target and you will get the dreaded sentence–”You have the bad kind of diabetes”.

What is the “bad kind of diabetes”? Is it when you have to have needles? Is it when you are on pills? Is it when you are overweight? Is it when you are two and don’t know why you have to be stabbed and poked at all of the time? Is it when you have to be hooked up to a machine 24/7? When does it become “bad”?

Personally, it is always bad.  In all of those cases, our bodies have rebelled against us and are not working as they should.  We have to fight and struggle to compensate. Using insulin actually can make it easier not worse. Modern insulins allow people with diabetes to be able to match insulin to food amounts in a way that their body, without insulin, can’t.  That’s not such a bad thing. It allows them to have that piece of chocolate cake without concern of a crazy high a few hours later.

This distinction between “good and bad” actually has a negative impact on treatment as well. While insulin injections or insulin pumps are not an option for a person living with Type 1 diabetes, it is often seen as a last resort for a person with Type 2 diabetes.  Sadly this is not the case.  Studies have shown that giving a person with Type 2 diabetes insulin earlier can actually preserve some of their beta cell functioning and make their lives a little easier.  Unfortunately, that “good and bad”  issue stops that from happening. People fear that they will be “bad” if they are on insulin.  This further translates to the thought that  those who live with Type 1 diabetes and need an external source of insulin to keep them alive must have it “really bad”.

I thought about other diseases and wondered if any others have it “bad”.  Cancer has stages.  Diseases like MS are referred to has having “full blown MS” versus the early stages.  I could not think of any other disease that allows people to have the “good kind” or the “bad kind”.  Is it the lifestyle component but if it is why do we not hold that same standard for other “life style” related diseases? Is it because in the other diseases they understand that lifestyle is only a small component? People will say that Type 1 diabetes is NOT a lifestyle related disease but that does not stop the public from blaming the lifestyle of the mother of a person with diabetes.  We are blamed for things like not breastfeeding long enough and other equally ridiculous notions.

What is the answer? How do we fix this? I don’t think that there is a quick fix.  I think that we continue as we have been. We educate people who ask us if we have the “bad kind of diabetes”.  We work with the media when they try to get it right. We are kind but firm with those people who are ignorant of the facts because we may have once been ignorant as well. Finally, we find a cure so that no one ever again has to be judged because their body has failed them.

Four Hours, Just Four Hours

Yesterday we opened up about how diabetes can bring us down. Today let’s share what gets us through a hard day.  Or more specifically, a hard diabetes day.  Is there something positive you tell yourself?  Are there mantras that you fall back on to get you through?  Is there something specific you do when your mood needs a boost?  Maybe we’ve done that and we can help others do it too? (Thanks to Meri of Our Diabetic Life for suggesting this topic.)

Is there a mantra that I fall back on to get me through a hard diabetes day? Absolutely! It is one that I share with newly diagnosed adults and parents who are struggling to get through. I remind them to look at life in four-hour blocks. If you take everything in four-hour strides and you can ride through anything.

When diabetes seems to be kicking your butt every morning, look at how things are going between lunch and supper. Are things okay? Give yourself a mental high-five and celebrate that victory rather than dwelling on the post-breakfast spike that this threatening to drive you over the edge.

Do overnights seem overwhelming? Again, break it down.  How are things from snack until 12 or 1am? What is life like in the deepest part of the night? Are things settled before breakfast or has chaos been awakened in those four hours? If you break it down into six four-hour periods, life becomes a bit more manageable and instead of seeing all of the bad, you can savor some of the good.

Why do I have a four-hour mantra? Because early on I learned that my son’s Humalog was supposed to last about 4 hours.  He was injected at 8am for breakfast, then at noon for lunch, around 5pm for supper and then again at 9pm for his nighttime snack.  I was going crazy trying to see a perfect 24 hour day. I realized that looking at a complete day was never going to make me happy. The only way to see success was to look at small chunks of time.  Coincidentally, that was also how we would make changes to his regimen.  Was his breakfast ratio of carbs to insulin off? How about at bedtime? Life was naturally being broken down into 4 hour chunks for me so why not work with that?

Now I know some of you will say, but we are using a pump so that won’t work for me.  Yes it will!  Chances are high that you are still doing things like having breakfast, lunch and supper.  You are probably still going to bed at one point as well. All of these events can be broken down and again my four-hour mantra applied.  Was I a successful pancreas this afternoon? Yes? AWESOME!! Let’s break out the happy dance!!! Did I have an issue after supper? Okay, let’s look at what can be done.

Life is less overwhelming in four-hour shots. It can be applied it outside of diabetes as well.  Are you wanting to change your eating habits? Did you have a great breakfast? Pat yourself on the back. Over did it at lunch? Do better tomorrow. Can you see how easily this works?

Life can be overwhelming.  As we discussed yesterday, life with diabetes can make it worse.  Taking life four hours at a time has allowed me to focus on what I need to change and to praise myself when I get it right…and we all need a lot more praise in our lives.

Ode to a Needle

 
Day two of this year’s blog week asks that we create poetry. I have not done poetry since high school and sadly that was not yesterday.  I therefore cheated and enlisted the help of my children.
This is what we came up with…
Needles are wonderful
Needles are fine
They poke and jab and and puncture me,
But keep me alive.

Some folks thinks needles are scary;
With that I must agree
But the needles that I must use
Allow me to continue to laugh, and play and be this awesome person–me!


By Liam and Barb…and don’t worry folks, we will not be taking up poetry as a full-time thing

Three Things that Raise My Dander

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.

5 Things that I have learned about me over the past 14 years...

Diabetes has a very steep learning curve.  Some of us have no medical knowledge and yet are forced to learn about giving needles and drawing blood. We must learn about nutrition and exercise instantly.  We learn how to work with our children and help them to understand what is going on in their bodies.

 

In a moment, our world changes. As I have said before, it completely explodes your world and leaves you to work with a new landscape.  It does not end your world, it just ends that naive world in which you may have existed before. It certainly did for me. As we navigate this new landscape, we learn a lot about our relationships and about our children. I thought that today I would look at things that I have learned about me over the years…

 

1. I became more empathetic thanks to diabetes.  I like to think that I have always had empathy.  I try to never judge a book by its cover and I tried to teach my children to do the same.  We never know what is going on behind closed doors or what is going on inside another person’s body. Just because they look well does not mean that they are not struggling with something that we can’t see.

 

Kerri Sparling brilliantly illustrates this point in her book Balancing Diabetes.  If you haven’t read the book, you should do so.  You will read about her response to a dinner conversation in which one person slams a family member with diabetes who “eats whatever they want, and they never test their blood sugars, and they never go to the doctor.” (page 161) Kerri stands up for this unknown person and asks how they know that this person really doesn’t do all of these things? She had tested and bolused at the table without anyone knowing so perhaps this person did too.

 

Diabetes has brought me that same sort of need to defend others.  When you see my son, you think that he is perfectly healthy.  You don’t see his broken pancreas unless you look at his insulin pump and then many would still assume it is his phone.  I don’t want people to think that my son is broken. He isn’t but he does have to deal with things that other young men his age don’t.  He looks after his diabetes privately. He does not show people how much work goes into looking and being as healthy as he is.

 

2. I have an even bigger mouth than people thought. I have always believed that if you don’t like something speak up.  Things will not change if you mutter to yourself.  If you want to see things happen differently then talk to people who can help you to make that change. Listen to their perspective and together work to create something that you can both live with.

 

After my son was diagnosed with Type 1 diabetes, I had a greater need to fix things. I think every parent who goes through this diagnosis of a child has this same feeling on some level. We often feel that we let our child down by allowing them to develop diabetes (boy do we have egos! Like we could have stopped this?) Our only way to “fix” things is to work to make the world better for them.  We learn as much as we can, educate our schools to protect our children, and we work with our diabetes team to get the best care that works for our child.

 

Some people will write letters, lobby government officials, and become very active in educating the rest of the world about life with diabetes.  That was me.  I wrote letters. I started a website. I contacted government officials. I wanted life to be fair and just for all people living with diabetes. I wanted to protect my son and all of the other children out there living with this disease. I wanted to make things easier for them…and I still do. I stood up to administrators and Ministers of government. I learned that they were all just people who had families.  They were not scary people with a lot of power but loving people who were often willing to listen to you.

 

I always knew that I had a mouth. As I said, I always believed in standing up for what I believed in. I didn’t know that if I stood up for something others would stand with me and that together, I could lead people to create serious changes in policies.

 

3. I didn’t know that I could touch people’s lives as much as they touched mine. When my son was first diagnosed, I was lost and felt terribly alone. After a number of months, I reached out to a group of parents online.  They touched my life and helped me in more ways than I could imagine. The inspired me to do more.  I was therefore honored when I was asked to be a part of their Canadian Children with Diabetes Friends for Life conferences.

 

I am a huge fan of these conferences and all that they give to families living with diabetes. Each time that I am at these events, I am humbled and amazed by what I see. Families become empowered and stronger before my eyes. They meet new people, hear new philosophies and get the chance to just talk to people who “get it”.   When I get to speak about issues that I have dealt with and offer ways that have worked, it is wonderful to have people come up to me later and say, “Thank you! I can do this now.” It is something that I never imagined that I would be a part of 14 years ago.

 

4.  I am not in this alone.  Fourteen years ago, I knew no one with children with diabetes.  I was given a phone number of a family diagnosed just before my son and we talked on the phone one day.  It would take us years to meet up.  In the meantime, I would find an online support group that helped me find my way.  It empowered me and educated me.  The members of that group became my family. They had been there, were living there, and had experienced that. They understood milestones like your child lancing their finger for the first time. They got the sick humor of watching blood gush across the lunch table.

 

Over the years, that support team grew.  I found people in my community to meet up with. I became involved in national groups and met new parents who were also struggling. Eventually social media grew and I became involved there finding many more parents and people living with diabetes.  Being able to share milestones and fears gives me the strength to move forward. I are far from alone today.

 

And the fifth thing that I learned? Diabetes makes us stronger than we ever knew! Life presents challenges.  Life as a parent presents challenges. Life as a parent of a child with diabetes adds another level of challenge to the equation. Many people have it worse. Many people have it better. I have cried in the shower. I have sat alone in the dark and shed a number of tears. I have been grateful. I have been frustrated but most importantly, I am still here to tell the story…and so are my children.

BC Takes Another Step Forward

Last night I returned from an evening out to see all sorts of posts about an announcement from the BC government.  They have decided to expand their insulin pump program to include young adults up to age 25.  This is fabulous news! No longer will young adults entering the workforce have to turn off their pumps at age 18.

 

This is not however the final battle in this war however.  There are still people over 25 who desperately need the help of their provincial medical plan to cover their insulin pump expenses. This is a fight that we will all continue until everyone living with diabetes in Canada  who require an insulin pump but cannot afford to pay for one, will have access to one.

 

In BC, the driving force behind the recent change is not happy to sit and savor this latest victory.  She is asking that people in British Columbia “please write the Hon. Minister Terry Lake and tell him that funding insulin pumps up to age 25 is NOT GOOD ENOUGH. I am begging all of my friends from BC to even just write a short email saying that we need pump funding for all ages of people living with TYPE ONE DIABETES with no age restrictions for people without extended health benefits to pay for them. It could be your family member that is in need of this life saving device. He needs to know that this is unacceptable. Please send it to terry.lake.mla@leg.bc.ca and carbon copy to  hlth.health@gov.bc.ca, judy.darcy.mla@leg.bc.ca (NDP health critic), your MLA and the premier premier@gov.bc.ca .”

 

Congratulations to BC advocates for getting to this point!  Good luck to advocates across Canada who seek to have their provinces follow the example of the Ontario government and fund ALL insulin pumps for people living with diabetes.  This is a moment to savor…and then move forward in a war that we will win for everyone with diabetes in Canada who wishes to use an insulin pump.

 

 

 

 

 

Details of insulin pump coverage by province can be found at http://diabetesadvocacy.com/pump_coverage.htm

My Sexy...Pancreas?

In honor of Throwback Thursday, I thought I would repost my look at the sex appeal of diabetes. I hope you enjoy--again....

October is Breast Cancer Awareness month. Everyone knows about breast cancer. If you are a woman like me, you fear it.  Everyone knows pink.  Everyone knows about losing a breast, chemotherapy and all of the other nasty things that come along with that horrible word--cancer.

November is Diabetes Awareness month. Very few know about diabetes.  Most people think it happens to someone else.  They don't think its serious.  They are not sure if the awareness color is blue or grey...and aren't really that concerned.  They know about blindness and amputation but that is not a given so its really not that big of a deal.

Its the ignorance of the disease that is frustrating.  The "its no big deal." and "You worry too much." comments that kill you.  I recently had a teacher ask me if we could arrange my child's highs and lows around an exam schedule.  She was well meaning and very sincere.  She thought that perhaps with warning of when a test was coming, that we could make sure that my son did not go high or low during that time. She was told by myself and one of her colleagues that it didn't work that way. 

It is hard to make people "see" what those of us who live with diabetes in our lives 24/7 "see" each day.  They don't understand why we test during the night and deprive ourselves of much needed rest.  They haven't had a friend not wake up from diabetes.  They don't understand how quickly a low comes on even after you have recently tested.  They haven't seen a child pass out in the middle of a playground because they went low and didn't know how to tell you.  They don't understand why we are so fearful of ketones.  They haven't seen the how quickly they attack our loved ones leaving them weak, frail, and clinging to life and how long it takes to get rid of them. 

To most people, diabetes is that disease where you can't have sugar (I mean its called "the sugar" isn't it?).  Its that disease that Grandma had but she liked to sneak cookies so its no wonder she went blind. Its not like cancer or a serious disease. No one dies from diabetes.  Parents who test, hover, and want you learn about that thing called Glucagon are just those overprotective people who need to learn how to let their kids just be kids.

I don't know how to get the majority to understand.  As someone recently said, diabetes is not sexy.  It is not a disease about pretty pink ribbons and cleavage.  Its a disease that is grey and about blood.  There is nothing attractive about diabetes.  You can't see a pancreas.  Don't get me wrong. I am very attached to my breasts and would love a day when we don't have to worry about breast cancer but after years of being my son's pancreas? Well, it may not be a sexy organ and it may not have any appeal to the general public but I guarantee it has my utmost respect and I would not want to lose it either.

So what is the answer? How do get more people to understand? We keep going as we are and then some.  We advocate. We educate. We communicate.  We teach those who want to learn.  We tolerate some ignorance and try to help them to understand what this disease is really about. Its a long road. Its frustrating at times but with each person who learns the reality? Well its another person who wants a cure almost as much as those of us who live with it.

A DTC Motivational Memory

Being Monday, I thought I would name the day “Memorable Monday” and I would take you back to a great memory that kept me motivated when fighting for changes to the Disability Tax Credit so many years ago…

 

The full story of how the changes to the  Disability Tax Credit came to be can be found on my website.  Suffice it to say, it was a huge struggle that was motivated and moved forward by many incredible and supportive individuals.  Together we managed to create a change that continues to benefit Canadians with diabetes today. 

 

There was one woman however whose story pushed me forward whenever I was frustrated.  It was a few words from her and what the credit meant to her family that made me more determined than ever to see this credit become equitable to everyone.

 

In the early 2000s, insulin pump therapy in Canada was beginning to hit its stride.  Insulin pumps were becoming smaller, smarter and available to more people.  They were not yet covered by provincial health plans and only a select few private plans were paying for them. This made this family’s story that much more moving.

 

I was contacted by a woman who wanted to help change the way the Disability Tax Credit was applied to people living with diabetes.  That in itself was not unusual.  As word of the initiative grew, I was contacted by more and more people who wanted to get involved.  This lady had two children living with the disease.  Life had to be a struggle but she did not complain.  She was writing to help  me not to ask me for assistance.  She was a hardworking parent.  Her children were doing well.  She was able to afford an insulin pump…but only for one child.  Her finances did not at that time allow her to pay for a pump and supplies for two children. One would be able to pump but one would have to continue on injections.  If we were able to make changes to this tax credit, then the money saved on her tax return at the end of each year would make two insulin pumps financially possible.

 

My heart broke.  That was not her intention but it did. I could not begin to imagine the struggle of having more than one child with diabetes but worse, having to choose who gets a pump and who doesn’t? That was so terribly sad.  I had to see change happen.  I knew that sadly this woman’s plight was most likely not unique.  The increased tax savings would help many other families and individuals living with diabetes.

 

As we wrote letters, contacted Members of Parliament, and spoke with the occasional member of the media, this family stayed in my head. I remained in contact with her.  She did her part to send letters and garner outside support for our cause. We finally won the changes that we desired.  She told me that she could now purchase two pumps with the money that she was now owed! I knew that the tears and frustrations getting to that point had been worth it.

 

I have sadly lost touch with the family. I honestly would not be able to even tell you where they lived but their story is still with me. It motivated me when fighting for the tax credit, I shared it when advocating for pump coverage. Some would say that I helped them but I know that this wonderful woman’s spirit  helped me to help many others.

Diabetes Mine Patient Survey's telling results

Not surprisingly, I belong to the international group “Diabetes Advocates”.  Yesterday Amy Tenderich from Diabetes Mine posted a link to a graphic and asked that the advocates share or comment as they saw fit.

 

For me the timing of this graphic was perfect. I had just been having an online conversation with another D-Momma about something very similar. She had stated that her son refused to wear a CGM despite her wishes that he would.  I told her that my son was exactly the same.

 

The Diabetes Mine graphic aptly showed both my son’s concerns as well as my own issues with technology.  I thought it was brilliant!

 

 

 

 

 

 

 

 

 

 

 

 

 

 67% of patients find the technology too expensive. My son and I are in agreement on that count.  He is horrified to think of how much he may have to spend on his diabetes care and threatens to go back on injections if his mother has not convinced the governments to cover his pump costs by the time he needs more help.

 

The biggest drawback to a CGM is the high cost.  I also agree with this.  My son however is more of the opinion that it is unappealing and uncomfortable (36%) and will further complicate his life (33%) by having him have to carry or wear something else on his body.

 

I would encourage you to check out this survey in detail. As always the folks at Diabetes Mine have hit on some great points that impact everyone dealing with diabetes. I hope that governments and insurance companies also begin to understand what these 700+ patients have said.  Perhaps then we can see some real change and viable access for everyone regardless of age, wallet size or geography.

Diabetes Awareness Photo 5

Today's prompt is "advocate".

My greatest honor as an advocate...being recognized at Friends For Life in Orlando with the Jeff Hitchcock Award. This was truly an amazing experience and it is wonderful to remain in the company of some of the world's most incredible advocates! 

The Pumpin Patch

In honor of wordless Wednesday....

Diabetes is a Piece of Cake

Diabetes presents many challenges.  There is the obvious one of trying desperately to match food to insulin while factoring in nutritional content, exercise (both past and anticipated), emotions, health, and more.  There is also a challenge in trying to get the outside world to understand that our fears and concerns are real.

Fourteen years ago, I knew nothing about diabetes. I had no idea how serious it was.  Today, my biggest challenge is getting people to understand that this invisible disease that appears to be a piece of cake to manage only looks that way because of the hard work that is put in behind the scenes.

The average person who walked by my son on the street would never know that he has lived with diabetes for almost 14 years.  He has no complications. He doesn’t have a cane or any limbs amputated. He looks like an average 16 year old male.

They might notice his insulin pump or his remote meter when he tested. If they did they would probably be amazed by the technology and think that it made life pretty easy. If they watched him eat in a restaurant, they would seriously wonder what all of the fuss was about. With the exception of the diet drink that he would order, the rest of his meal would be more than two average people would eat at one sitting and he would somehow find room for dessert! How can life be that much of a challenge?

What they don’t see is how hard it can be to make that technology  work to its very best. They don’t see the time that my son and I spend reviewing  data, discussing what happened when he went low–had he been exercising in the past 24 hours? What was his reading in the test before? Did he count the carbs properly? Did he factor in fat and extend the insulin delivery over time or simply give it all in one shot?

They don’t see us discussing highs–was there a site failure? Did he run out of insulin? Did he make a mistake in how many carbs were in his food? Did he over-treat the low that he had earlier? Did he miss a low and his body rebound with a high? Is he growing? and the list of questions goes on and on but only we hear them.

They don’t see the effort and thought that goes into every setting on his pump.  The details that I examine before inputting the amount of insulin he gets delivered into his body just so it can function.  They know nothing of the detailed calculations involved in deciding how much insulin he should get for each crumb of bread or bite of apple that passes his lips.

An average person does not realize that keeping my son alive and as healthy as he is has taken a lot of work and involved some serious stress at times.  Diabetes does not stop at night and neither do we.  My son is tested throughout the night and if he is high or low during that time, he must be treated.  Nights become more dangerous because unlike the day when he tends to notice fluctuation in his blood glucose levels, at night he will sleep through all but the most extreme highs.  Whether we are up for 15 minutes during the night or two hours, life goes on and the world does not notice what we had to do to keep my son alive and healthy.

The biggest irony of diabetes personally is that the harder you work, the more normal you look,  the more people think that you are exaggerating just how much work it takes.  Diabetes is an invisible disease.  With the exception of a blood test, a needle or a pump, no one “sees” the challenges that diabetes presents. They don’t see the hard work behind the scenes. They tend to think that you must be over-blowing the fears and concerns that you have.  They do not understand that the reason that you or your child looks so healthy is because of hard work not because diabetes is "no big deal". 

How do we change this? How do we balance getting people to understand the struggles while showing them that diabetes does not stand in the way of being who you want to be? That is yet another challenge but its a challenge that many with diabetes do daily with a strength and confidence that inspires us all.