November 14th is World Diabetes Day. Those who live with diabetes often remark that every day is diabetes day! That is true but November 14th is special.
The 14th is the day that Sir Frederick Banting was born. For those who don’t know, Banting was a Canadian born medical scientist. He received the Nobel prize for his work isolating insulin for therapeutic use with his colleague Dr. Charles Best. He is the reason that my son is alive and thriving today.
Before 1922, a person with Type 1 diabetes was not expected to live long. The only way for them to survive was on very strict diets and those diets often left them malnourished. Injected insulin came along and changed that.
The incredible before and after image of Leonard Thompson shows us just how dramatic of an impact insulin had on the lives of those living with diabetes.
While my own son wasn’t as emaciated as poor young Leonard. He was gaunt and skeletal before he was diagnosed. My youngest child had always been a thin child. He had been sick but seeing him teetering in the bathroom after he began to receive insulin sent me into shock,however. His skin was hanging off of his tiny body and it had happened so quickly.
Thankfully on November 14, 1891 a man was born who would find this miracle elixir. He would discover a way for my child, and millions like him, to receive the insulin that they were lacking in their own bodies. Dr. Banting gave them their lives back. He gave parents back their children.
Those of us who use insulin, no that it is not a magic pill. We understand that it must be respected. People living with diabetes quickly learn how the smallest doses of insulin can have life-threatening consequences. Despite the risk, the reward is incredible. We have our children, our partners, and our friends. They thrive, contribute and enrich our lives.
On this day we say “Happy Birthday Dr. Banting!! Thank you so very, very much for giving us this incredible gift of life.”
The past few weeks have been incredibly busy and I have never been more proud! I have been battling the Federal government over the Disability Tax Credit since the early 2000s. There have been victories and most recently there have been setbacks but we have come a long way!!
Let me give you a bit of history.
Back in 2002 or so, a lady named Shelley Tyler took the Canada Revenue Agency to court and won. She believed that her son was eligible for the Disability Tax Credit because they took an inordinate amount of time to feed him and keep him alive. Her son had type 1 diabetes.
Mrs. Tyler was kind and shared her experience with others. I used some of her work in preparing my own application. Others did as well.
More and more families were applying for the Disability Tax Credit. They were still being turned down, but even more where refusing to take no for an answer. They were taking their cases to Tax Court–and winning!
Families like the Chafes were winning the argument that insulin therapy was administered 24 hours a day when using an insulin pump. This led to a year of qualification for all pumpers.
(The irony of recent comments that the increased use of insulin pump therapy is why applications have been denied is not lost on me. )
Changes were happening. The diabetes community was roaring. We were a grassroots group. The Canadian Diabetes Association was only in the infancy of creating a dedicated Advocacy Office and JDRF was focused on funding research. That was okay because the diabetes community was powerful in its own right.
Together we rallied. We worked on court cases. Friends and family members contacted their MPs and demanded fairness. The diabetes community was represented at the Federal review of DTC fairness.
The result was legislative change. Children with diabetes were now given the tax credit based on a certified diagnosis of type 1 diabetes. Adults were also allowed the credit but their means test was a bit more strict.
Recently there seems to have been a change in how disability tax credit applications are handled for people with diabetes. We have discussed it before. One thing hasn’t changed however and that is the power of the diabetes community.
Thanks in part to the power of social media, the community voice is louder than ever and I couldn’t be more proud!
Diabetes Canada is sending well-spoken, knowledgeable individuals to meet with CRA and voice our concerns. JDRF has been delving into the issue for months as well. Together they are creating a powerful voice. Behind the scenes, there are many more grassroots groups working together. Everyone is pushing the same message. “Diabetes is a 24/7 job. People living with insulin dependent diabetes take more than 14 hours per week to perform life-sustaining therapy.”
The message is getting out there. This issue was all over the media. My Twitter feed has been blown up with articles and Tweets. I am proud! The diabetes community is coming together.
Some members have voiced their frustration. This should have been finished years ago. People living with diabetes have enough to deal with. Fighting their government for a credit that they obviously qualify should not be another stressor. They are right of course. I totally understand their get their pain.
I have been in this battle since the beginning. It’s been a long one but please don’t lose hope! This is not a war that is lost. It is a battle that will see victory.
The diabetes community is a powerful voice. Canadians with diabetes are coming together in record numbers. We are using that voice to let CRA and the Minister of Finance know that we are not prepared to back down.
Now is the time to keep the momentum going. Write your letters to your MPs. Answer the call when one of the diabetes organizations calls looking for your story. Our voice is strong. We have come a long way and together we will finally win the war.
People generally mean well but sadly many just don’t think before they open their mouths. I therefore thought that it might be a good idea to create a little list for them of thing that you really should NOT ever NEVER say to parents of children with diabetes. Consider it a personal service announcement if you will…
My cat had diabetes
Really? Seriously? Because we know that you injecting your cat’s fur with insulin is really identical to chasing a toddler around the room with a syringe, pinning them down and explaining that you are stabbing them for the fourth time today because you love them. Yes, I am sure they are exactly the same.
Yes, there was an eye roll here.
My great-aunt Thelma died of diabetes
Thank you. I needed to hear that. I have guilt on top of guilt about not protecting my child from this disease and you tell me that your 90 year old aunt died because of diabetes?
Odds are that she had Type 2 diabetes and at 90…well her odds weren’t the greatest for lasting long anyway but yeah, I can see where I needed to know this.
This is why parents of children with diabetes have bruises on their heads. They spend a lot of time banging it against a wall in frustration. .
Don’t worry. I am sure that your child will grow out of it.
The odds of my child outgrowing their diabetes are lot less likely than as you overcoming your ignorance of what type 1 diabetes really is.
Nope, growing out of diabetes is not an option. My child’s pancreas is just no longer doing its job. We have tried everything we could to revive it but its dead. Gone. No functioning beta cells to produce insulin. No hope.
On the upside, I would really encourage you to do a bit of Googling or even ask some questions of me and then listen. Truly listen to what I will tell you and you might be surprised at what you can learn. Your ignorance can be cured!
Perhaps if you hadn’t given your child so much sugar, then he/she wouldn’t have gotten diabetes.
Perhaps if you had not thought that they said “trains” when they were handing out “brains” and decided that you didn’t want to go for a ride, you would have a bit more of a clue.
Having a child with diabetes brings enough guilt. I fret over what I could have done. I berate my faulty gene pool for allowing this to happen to my baby. Despite these things, I did not cause my child to develop diabetes. What my child ate had nothing to do with his diagnosis. Really.
Would she prefer a diabetic chocolate?
Eeeekkkk!! Run! Fast! Actually if you eat many of those chocolates you will have to run fast–to the washroom. Many diabetic candies are filled with sugar alcohols that can cause diarrhea.
Thankfully, my child is able to balance insulin injections with food intake so regular candy is just fine. We do appreciate you trying though.
Perhaps you may want to relook at how many of those candies you have as well. I kid you not. They are nasty!
Is their diabetes under control?
Control? What is that??? A parent of a child with type 1 diabetes is trying to keep a blood sugar fluctuation of .54grams per liter on a constant basis despite over 25 influencing factors trying to mess with things. Imagine that…trying to maintain a balance of less than one gram of sugar with the influence of stress, food, exercise and 20+ other things! Can you see why as parents we simply celebrate when they get even two readings in range?
It’s a big deal. Diabetes is a really complicated disease. Most parents of children with diabetes are doing their very best to balance allowing their child to be a normal kid and trying desperately to manage blood sugar levels so that their children feel healthy. It is a huge challenge.
Parents of children with diabetes appreciate when you care. Really we do, but please, please, please, think before you speak!
There are certain things that you really truly should not say to parents of children with diabetes. Offer them a smile, a sympathetic ear, a kind word even. Honestly, they are much more appreciated.
Johnson and Johnson announced on September 5th of 2017 that they were closing the doors on their insulin pump division in Canada and the US. Animas Insulin Pumps would be no more. Animas insulin pumpers in North America were heartbroken.
While some saw it coming in the corporate rumour mill, others were blindsided.
Animas had done something that many companies in many industries are striving to do…they had created a feeling that you were family. Whether you were an Animas insulin pumper or you used another brand, you had probably attended an Animas event and were treated royally.
The employees with Animas all seemed to genuinely care about you. They checked in on you and took the time to know your family. I had the pleasure to work closely with many members of the Animas family over the years. They will be huge assets for the next company that employs them. I am sure that many of them are just as saddened as we are.
This is not the first time that an insulin pump company has closed its doors. We have been here before…twice.
Cozmo (personally a pump like no other) closed its doors in 2009. We still have two in my son’s closet. I have friends who still wear this as their pump of choice. It is doable even 8 years later.
Most recently, Asante, a pump revered by many who tried it, was also forced to step away from the insulin pump market. Their users were devastated. They were heartbroken and felt lost–just like Animas insulin pumpers are feeling today.
What do I do next?
Take things one step at a time. The great thing about insulin pumps is that, while some have quirks, many are pretty sturdy and last. If you have more than one pump in your house–usually because one was out of warranty and you purchased a new one right away “just in case”, relax. If for some reason, your current pump stops functioning, go back on your old one while you decide which pump to try next! Just make sure to write down those settings and keep them in a safe place.
How long do I have before I can’t get supplies?
You don’t have to stockpile supplies You don’t have to run out and buy a new insulin pump tomorrow. The Animas press release stated that warranties will continue to be honoured until September 2019. Cartridges will be be available until that date as well.
Statements from both Animas and Medtronic note that supplies will still be able to be ordered in the same way as before. Nothing changes, except when your Animas pump stops working, you will not be able to purchase a new one.
So while we take a breath and rethink our next steps…our next pump…our next option, I want to take a moment and say thank you. Thank you to the men and women who worked so hard to make Animas a different company. I truly appreciated getting to know so many of you. You brought us a new experience in caring. I hope that we meet again soon, with a new company perhaps bringing new options in diabetes care.
Options are the most important thing. Make sure to always know your options and always choose the option that works best for you and your lifestyle.
Diabetes is not a joke. Diabetes is not about weight or junk food. This disease requires those living with it to walk a fine line…too much or too little insulin can have catastrophic ramifications. The fear is real and justified. Type 1 diabetes kills.
The article below was originally published on May 11, 2016. It was exceptionally hard to write. As a parent of a child with diabetes, we know that diabetes is deadly but we hope it will never kill one of our own. When it does….well your world is shaken to the core and is never the same again.
I think of this family daily. I can only begin to imagine their pain and the pain of others who have also lost their loved ones to this disease. We will never forget. We will continue to work towards a cure.
In the diabetes online community, the appearance of a blue candle suggests that someone has lost their life to diabetes. Its a time of sorrow and a time during which we hug our loved ones a little closer. It is also a time to test a little more often before we allow the memory to fade and we move on.
Last week I received a message that made my heart stop.
I headed over to a friend’s Facebook page to verify what I had read.
There was the blue candle.
My breathing stopped.
I read her post.
The tears began to flow.
Through the tears I sent a message to my friend. She confirmed my worst fears with her words “I just want him back.”
That’s what I replied through the tears. I was numb. The blue candle was no longer for a stranger who could have been my child. This candle was for a child that I had watched grow through our online communications. This was happening to a friend who had been there for me through highs and lows of 16 years with diabetes. I wished I could bring her son back to her. The pain was too much for me and I couldn’t begin to imagine how she was feeling. It hurt too much to try.
No mother should bury their child. We shouldn’t have to mourn for those who have yet to have fully enjoyed their lives. There is something fundamentally wrong with that. It makes our hearts ache.
When we hear of a child lost, we hurt but we push it away. It happens to other people. It is horrible but it happens to other people. But what about when it doesn’t? What about when it hits your family?
Last week it hit my family and the pain is still fresh. The reality is stark. Diabetes kills people regardless of age.
15 +years ago, I became connected to the internet. I reached out to find “parents of children with diabetes”. Instead I found an information email list, or so I thought but what I really found was a family.
I found people, some that I would meet, some that I would talk to on the phone, and some that I would never know beyond the keystrokes of a keyboard. All of them would become family. They would be by my side through the good times and the bad. They would understand diabetes –its peaks and valleys but they would also understand me. This incredible online community would be there for me at all hours from around the globe. They were Friends for Life–they were family.
Over the years, some of those connections have been neglected. Our children have grown and some of our children have become parents themselves. We have watched each other’s lives on Facebook and occasionally we wish each other well.
Other connections remain strong. We reach out regularly. We have remained in contact and fondly look back on where we have been.
No matter whether we are close or drifted, when tragedy strikes we are all one big family again. One family united by pain–sobbing with each other. A family holding each other in virtual hugs through real tears.
Tragedy isn’t supposed to hit us. Not a direct hit like this one. Diabetes isn’t to supposed to take a child that we “knew” and watched grow but it has. The pain is unbearable.
I know that the pain will fade for some of us. It will dull a little for my friend but that missing piece will never be replaced. I am lucky. In 16 years, my son has stayed quite healthy. In all of this time, I have only known of one person–whom I had met, spoken with, and been friends with, who had died because of diabetes but now there are two. Those are two too many.
I don’t want there to be any more. There must be a cure. People with diabetes deserve better access to treatments. We need more awareness. We need more…
Those of us in the diabetes community will continue to work harder. Some people will bike more while others will walk more. We will all advocate louder. The general public must understand that our fears are not unfounded. Type 1 diabetes can be a deadly disease regardless of age.
Our hope will remain.
We came together because of diabetes but we have stayed together because of incredible friendships that know no borders. I pray that one day we will celebrate a life without diabetes. Until then, hug your loved one a little closer today. Send prayers and strength to the families who have lost someone during our fight. I am grateful to each of you who have become such an important part of my life.
Have you read the blog post “What Everyone with Diabetes wishes you knew“? Go and read it if you haven’t. Bring tissues. After I wiped away the tears, I began to think about “what parents of children with diabetes wish you knew.” Some of us don’t have diabetes ourselves but we still have very strong feelings about the issue. As parents of people with diabetes, we have things that we wish our children knew. There are also things that we wish that the general public knew.
Parents of children with diabetes wish that the our children with diabetes knew that….
We would take this disease from them in a heartbeat…a heartbeat.
With every tear that they shed, we have privately cried a hundred more… We didn’t want you to see how much it hurts us to hurt you. We told you that we do this to keep you healthy and alive (and we do) but it kills us too.
No matter how old you are, we still want to “make it better”. Seriously. Still.
We know that you can handle it. We just wish that you didn’t have to…As parents of children with diabetes, when we were completely responsible for your care, we got tired and wanted a break. We understand that you, as the person with diabetes must feel the same way at times. We wish we could carry the burden for you.
Even when we don’t ask you how your readings are, we are still wondering if they are okay…
We know that you are more than a number. As parents of children with diabetes, we understand that blood glucose levels are only part of the story but we want you to be okay. We want to know that the readings are okay as well.
We have watched you sleep and cried at all of the holes that we have put into your body just to keep you alive.
Every night that we sat awake waiting for your blood glucose to rise or fall, we did from love and a need to keep you safe.
When we nag at your for not testing, injecting or rotating sites it’s because we want you to have a long and healthy life.
It’s not that we love the sound of our own voices. It’s not that we think you don’t have a clue. As parents, we know that life happens and people forget. We just want to help.
If you need us to, we will still help you with any care or night testing.
Ask. We might be out of practice but we are quick studies. We will help you anyway and any time that we can. It’s just what parents do.
Even if you aren’t my child and you live with diabetes, I wish I could take it from you.
Honestly, I wish I could help you carry that burden for a week and let you breathe. I have told you this before and I mean it. I don’t care how old you are. You are someone’s child with diabetes. You carry the same burden as my own child. It still kills me.
I wish you didn’t have to carry so much “gear” with you when you go out.
I wish you knew the luxury of just grabbing your wallet and keys and heading out the door without concern for insulin, pump, glucometer and glucose tablets.
We wish for a cure too.
Until it arrives, we will work with you to have the best care, the best knowledge and the best tools that we can afford.
As parents of people with diabetes, we wish that the general public really understood that…
Type 1 is not the same as type 2 diabetes.
Each disease has its own challenges and issues.
We did not cause our children to develop diabetes.
Seriously, we carry enough guilt about not protecting our children from an invisible disease. Your added blame is not required.
It is okay for our children to have treats now and again, the same as your children do.
No child–or adult should live on junk food but a cupcake now and again will just brighten someone’s day…or raise a falling blood glucose level.
Insulin is not a cure.
It just keeps my son alive…and can kill him. It is a carefully managed tool that he must use at all times.
An insulin pump is not a cure either.
An insulin pump is an expensive tool that not everyone can afford. Even for those lucky enough to be able to use one, there is still much work to be done to be safe and healthy.
Diabetes is expensive.
Let me repeat this….diabetes is EXPENSIVE. There are many great advances in diabetes care but they are only available to those with excellent insurance or deep pockets. The cost of diabetes supplies can range from the equivalent of a car payment or mortgage payment each month. Again, that is just for a person with diabetes to stay alive.
I look tired because I don’t sleep at night.
After years of worrying about my son’s blood glucose levels and testing him numerous times per night–well I still wake up. I still worry about what his readings are. I still don’t sleep properly
Worrying isn’t about being an overprotective helicopter parent or because I have nothing better to do with my time.
I worry because diabetes is deadly.Errors in insulin, errors in tools or simply changes in activity levels can have lethal consequences for people with diabetes. This isn’t just talk. This is real. I have lost friends to this disease. Parents of children with diabetes have seen their children die because of diabetes. Diabetes kills. It is a scary disease.
As a parent of a child with diabetes, I hope both my child and the general public know that I will continue to work hard every day to improve the lives of people with diabetes. I will offer a helping hand, a strong shoulder or the voice of experience where necessary. I will continue to dream of a day when we can say that we are parents of children cured of diabetes.
It slipped my mind…sort of…well, more so than ever before. Today is the day that Diabetes turns 17 years old in our house. Strangely, it hasn’t consumed all of my thoughts this month. I haven’t planned this post for weeks in advance…in fact I actually had another post planned for this week when I realized the date!
That is unheard of for me.
Every March I think of two things…what will I get my oldest son for his birthday and how long diabetes has been a part of my youngest son’s life.
This March has been a bit different. I was busy this March with other things. For the first few days of the month, I got to spend time with my nephews after not seeing them for a few years. I was able to meet my youngest nephew for the very first time. We enjoyed cuddles and goofing around. It wasn’t until I was home that I thought about his little life and the life of his older cousin–my youngest son.
When my son was his age, he was being stabbed with a needle somewhere in his body 5+ times per day. At the age of 3, his little fingers had tiny marks from testing his blood glucose levels 8 or more times per day. My sweet little nephew had bruises on his knees from playing outside with his trucks. When my son was that age, he had similar bruises but there were also bruises that would sometimes find his arms, legs or stomach after an injection.
I am so glad that none of my nephews have had to go through this. I remain in awe of how well my son has managed to cope. He won’t even notice this day. Life with diabetes is all that he has ever known. For him, it is simply St. Patrick’s Day–an excuse to go out with his friends and have a beer.
Today I will pause as I always do. Most likely I will message a dear friend whose son shares this “dia-versary”. On this day, I will be extra grateful for the many incredible and lasting friendships that diabetes has brought into my life. I will also take a moment to cry for the friend who lost her child last year–we were brought together because of our sons’ common diagnosis of type 1 diabetes.
Today I am sure that I will slip back in time for a moment. There will be a pause in my day when I vividly recall the lifeless child that I held in my arms 17 years ago. I will remember the prayers that I said and the prayers that were offered as we rushed to the hospital. At one point today I will see, in my mind’s eye, the doctor who sent my son to ICU and told me, “if he makes it through the next 24 hours, you will need to learn a lot about diabetes.” The phone calls, the terror, the uncertainty will all come flooding back just like it was yesterday.
Today I will quietly cry for the life that was lost but I then I will wipe away the tears. As I tell others, today is about celebrating. Today marks 17 years that my son has lived strongly with type 1 diabetes. He has never let it stop him from doing anything–except for shoveling the driveway in the winter. He seemed to often be conveniently low as a child during that particular chore.
My son now manages his diabetes his way. I don’t test him. Rarely do I know what his blood sugar levels look like. I can’t tell you his insulin to carbohydrate ratio or even his basal rates. Diabetes is his disease to handle now.
It hasn’t all been perfect. There have been stumbles along the way. I still remain there to help when asked. We discuss carb counts or extended boluses. I still do site changes when required. Seventeen years later, we are both finding our way but he is healthy and thriving. I can ask for nothing more…except a cure of course.
I understand that you probably know very little about the reality of living with 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 willing to learn the facts about diabetes as well.
I wish you had more empathy and less judgment
If you open your mind and learn, I hope 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 someone has diabetes that 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 all of these years that 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 because he has type 1 diabetes. 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 educate people on the reality of life with diabetes when I can
I have learned to calmly tell those kind health care providers who ask if my son will outgrow type 1 diabetes that, no, he won’t. 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”.
No, I didn’t cause my son to have type 1 diabetes
John. Jane. 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 very few processed foods but that was not enough to protect him from developing diabetes. His body still failed him. It attacked him 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.
My ignorance of the reality of illnesses like diabetes and my faith in the medical community delayed my son getting treatment much later than he should have. I will accept that. 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 the doctor, 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. The reality of living with diabetes means that keeping my son alive and healthy for the past 15 years has 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.
Please be more understanding when talking about diabetes
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 with diabetes is really 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 can do 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. Further, it is not fair to that student who has enough going on in her body dealing with the reality of living with diabetes 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.
These are just some of the realities of living with diabetes, 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.
A tired mother of a young man with Type 1 diabetes.
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 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.