For the past year or so we have been hearing clips about the Bionic Pancreas Project. I was lucky enough to have heard Dr. Ed Damiano present about his work at the CWD Friends for Life Conference in Toronto. It was the first time that I was truly excited by what was happening in diabetes research.
This was a project that was privately funded and motivated by a
father’s love. There was no political agenda to hold things up. There
was only his passion and desire to see his son safe when he could no
longer be there to watch him at night. His drive pulled at my heart and
for the first time gave me hope.
This summer, clinical trials are continuing. More adults are getting
to experience life with the bionic pancreas. More children are getting
to experience it as well. According to the latest video, they are now
reaching the stage to change the design making things more streamline.
This is moving quickly to become a reality!
Being me, and spending so many years advocating for access to
better treatments regardless of income or insurance coverage, I can’t
help but wonder what direction this project will take. To me, and I am
sure to Dr. Damiano, this device is the diabetes equivalent of a
pacemaker and should come under the larger umbrella of our health care
system making it available to everyone who is insulin dependent.
At this stage, they are far from knowing how things will proceed in
terms of distribution. We will have to wait. While we wait, I will
continue to work to see access to insulin pumps and CGMs for all people with diabetes regardless of age. I will continue to put money into my son’s RDSP
just in case he does have to purchase the system out-of-pocket to begin
with. If need be, we will advocate for access for everyone to this
life changing technology but for now, I will watch and cheer from the
sidelines. I will hope that this will be the technology that changes
the life of my son and all of our children with diabetes (no matter what
their age).
The ranting of a mother and advocate for Type one diabetes. The founder of www.diabetesadvocacy.com welcomes you to journey through life with a son with Type 1
Friday, July 25, 2014
Tuesday, July 15, 2014
Support in the Strangest of Places
I am an avid reader. I have loved to read since I was a child. If I
could find a way to read for a living, I would be a very happy and
ideally very rich person. I read everything. I read action books,
mysteries, spiritual books, diabetes books, and most recently a book
about a mother of a girl who has anorexia.
I am not exactly sure what made me decide to open this book and read it. Perhaps it is my own struggle with my body image. Perhaps it was the fact that is was a mother telling a story of her struggle with her child's potentially lethal disease. Whatever it was, this book quickly showed me that being a parent of a child with a disease--any disease, sadly puts you in a club with more similarities than differences.
Brave Girl Eating by Harriet Brown, first hit home when she wrote "you're not to blame, you're not alone, and you can make a difference in your child's life". What a powerful statement! It needs to be a poster in our diabetes clinics. It is a statement that each and every parent of a child with diabetes needs to fully understand and embrace. As I have said before, we carry our own guilt and are further burdened by the misconceptions of others. We need to know that we are doing our very best and that is all that any one can ask.
For some reason, Ms. Brown seemed to make more than one comparison of life with anorexia and life with diabetes. I am not sure if she knew someone living with diabetes or in her research she found some similarities but she does make reference to living with the disease on more than one occasion. She also makes many statements that could easily apply to living with a child with diabetes.
She talks about feeling overwhelmed by her daughter's illness and then feeling guilty about it. "I can take a walk, read a book, shut out the anorexia for a little while. But its insider her. She can't get away, not for a second." How many parents of children with diabetes have felt that exact same way? How often have we felt guilty because we could sleep through the night when our child went away to camp or when we went on vacation and left them with a responsible parent or loved one? It hurts us to know that we can leave it behind but our children can't.
She talks about things like her daughter lying to her about food and again the issue crosses over easily into life with diabetes. In our case, our children tend to reach an age where they lie about food intake, insulin dosing, or bg level readings. The violation of our trust is devastating either way and in both cases the lie is brought about by frustrations with a disease. It isn't any better no matter where it comes from. The pain and sadness as a parent is equally overwhelming.
Ms. Brown talks about wondering if her daughter's behavior is because of anorexia or simply because she is a teen? When my son was small and would fall asleep during the day, I would panic and test him. Was he sleeping because he was a toddler who was tired or was he low and had passed out? If he threw a tantrum, was he being a child full of spite and temper or was his rage fueled by high blood glucose and therefore he may not completely responsible for his actions? How did I decide? How did I find a balance with punishment? Like the author, I struggled.
In Brave Girl Eating, the author also talks about stigma. In this case the stigma of a mental illness. In diabetes, we know that there are many stigmas and fighting the public's misconceptions can often be almost as difficult as battling bg levels. To make things even worse, there are an increased number of people living with diabetes who also are dealing with eating disorders (is it any wonder when their lives revolve around food 24/7) as well as depression. They must understand this book in more ways than I can begin to imagine. How painful.
Ms. Brown also speaks to the idea that anorexia has taught her to live in the moment. Ironically diabetes has had a similar effect on my own life. Learning to live life four hours at a time was the only way for me to cope. Nothing else mattered. Tomorrow was too far away but his NovoRapid would kick in within four hours and it could fix that high, maintain his perfect reading or be just enough to send him low and create more havoc for me. Four hours--just get through four hours and then go forward.
As I mentioned, ironically she notes the similarity to diabetes more than once. In learning to live with the new normal of life with anorexia, she wrote, "I told her if she had diabetes, she'd have to test her blood sugar every day; at first it would be a pain, but she'd get used to it. It would become just one of those things she had to do, like brushing her teeth. It would become part of "normal" for her." We know that diabetes is a bit more than testing daily. We know that you never really get used to lancing your finger each day, but it is something that has to be done...like brushing your teeth. It is something that you somehow have to come to accept in order to move forward with your life.
Its funny where you find inspiration and camaraderie. I started this book because I was in part looking for insight into my own body image issues. I finished this book realizing that parents of children fighting illnesses may have many more similarities than we thought possible. When we open our minds and our hearts, we find support in the strangest of places.
I am not exactly sure what made me decide to open this book and read it. Perhaps it is my own struggle with my body image. Perhaps it was the fact that is was a mother telling a story of her struggle with her child's potentially lethal disease. Whatever it was, this book quickly showed me that being a parent of a child with a disease--any disease, sadly puts you in a club with more similarities than differences.
Brave Girl Eating by Harriet Brown, first hit home when she wrote "you're not to blame, you're not alone, and you can make a difference in your child's life". What a powerful statement! It needs to be a poster in our diabetes clinics. It is a statement that each and every parent of a child with diabetes needs to fully understand and embrace. As I have said before, we carry our own guilt and are further burdened by the misconceptions of others. We need to know that we are doing our very best and that is all that any one can ask.
For some reason, Ms. Brown seemed to make more than one comparison of life with anorexia and life with diabetes. I am not sure if she knew someone living with diabetes or in her research she found some similarities but she does make reference to living with the disease on more than one occasion. She also makes many statements that could easily apply to living with a child with diabetes.
She talks about feeling overwhelmed by her daughter's illness and then feeling guilty about it. "I can take a walk, read a book, shut out the anorexia for a little while. But its insider her. She can't get away, not for a second." How many parents of children with diabetes have felt that exact same way? How often have we felt guilty because we could sleep through the night when our child went away to camp or when we went on vacation and left them with a responsible parent or loved one? It hurts us to know that we can leave it behind but our children can't.
She talks about things like her daughter lying to her about food and again the issue crosses over easily into life with diabetes. In our case, our children tend to reach an age where they lie about food intake, insulin dosing, or bg level readings. The violation of our trust is devastating either way and in both cases the lie is brought about by frustrations with a disease. It isn't any better no matter where it comes from. The pain and sadness as a parent is equally overwhelming.
Ms. Brown talks about wondering if her daughter's behavior is because of anorexia or simply because she is a teen? When my son was small and would fall asleep during the day, I would panic and test him. Was he sleeping because he was a toddler who was tired or was he low and had passed out? If he threw a tantrum, was he being a child full of spite and temper or was his rage fueled by high blood glucose and therefore he may not completely responsible for his actions? How did I decide? How did I find a balance with punishment? Like the author, I struggled.
In Brave Girl Eating, the author also talks about stigma. In this case the stigma of a mental illness. In diabetes, we know that there are many stigmas and fighting the public's misconceptions can often be almost as difficult as battling bg levels. To make things even worse, there are an increased number of people living with diabetes who also are dealing with eating disorders (is it any wonder when their lives revolve around food 24/7) as well as depression. They must understand this book in more ways than I can begin to imagine. How painful.
Ms. Brown also speaks to the idea that anorexia has taught her to live in the moment. Ironically diabetes has had a similar effect on my own life. Learning to live life four hours at a time was the only way for me to cope. Nothing else mattered. Tomorrow was too far away but his NovoRapid would kick in within four hours and it could fix that high, maintain his perfect reading or be just enough to send him low and create more havoc for me. Four hours--just get through four hours and then go forward.
As I mentioned, ironically she notes the similarity to diabetes more than once. In learning to live with the new normal of life with anorexia, she wrote, "I told her if she had diabetes, she'd have to test her blood sugar every day; at first it would be a pain, but she'd get used to it. It would become just one of those things she had to do, like brushing her teeth. It would become part of "normal" for her." We know that diabetes is a bit more than testing daily. We know that you never really get used to lancing your finger each day, but it is something that has to be done...like brushing your teeth. It is something that you somehow have to come to accept in order to move forward with your life.
Its funny where you find inspiration and camaraderie. I started this book because I was in part looking for insight into my own body image issues. I finished this book realizing that parents of children fighting illnesses may have many more similarities than we thought possible. When we open our minds and our hearts, we find support in the strangest of places.
Subscribe to:
Posts (Atom)