One School Year Down….

Last September, June seemed so far away.  As my heart was breaking to watch my son go off on his own, he reminded me that it would only be for two school years.  That seemed so long but we have survived the first one.

Somehow I managed to get through an entire school year living in a different city, in a different part of the province from both of my children.  My youngest son managed to handle blood testing, site changes and doctors appointments without me there to organize it all.

With summer finally arriving, my son is more confident in his own care.  I don’t often ask what his readings are.  Even when I do, the answer I always get is “Fantastic!”  I have no idea what his last a1c was.  He handles most of his supplies, refills, and life with diabetes on his own now.

There will be no break for him over the summer. He plans to work in the area where he is living so his trips to see me will be short at best. Our lives have changed.

I now sleep a little easier at night. I still fear for him but I can’t do anything about it when we are so far away so I just have to have faith that all will be okay.

I allow myself to sleep in in the morning. I don’t count the carbs in my food as often as I once did. I still notice pumps. I still keep on top of the research going on in the diabetes world.

I still wonder what my new role is now that job as full-time mom and pancreas has taken on very different hours. Instead of being on the job 24/7, I now remain on call at all hours.  Oddly, that is less demanding and the stress is what you make it.

I have found a new focus…well refocusing on an old issue.  I offer my experiences to those who are interested.  I still find myself at a loss some days wondering who I am now.  It’s a very strange feeling that is hard to explain to others.

I will find my way. My son is finding his.  Our roles are a little different but my children are learning to fly on their own…and they seem to be doing well.  What more can you want?

http://www.dreamstime.com/-image18434403

 

The Weight of Guilt

As I started to read Ginger Vieira’s book Diabetes Burnout, I was hit by an incredible sense of guilt.  Did I push my son too hard? Did I expect too much? I was later vindicated but I was reminded  the overwhelming guilt that comes with being a parent of a child with diabetes…or maybe its just me.

Well meaning people share with us many “reasons” that children develop diabetes and somewhere in the back of our mind’s ( well my mind anyway) we ask was that it? Was that why my son developed this disease? Did I not breast feed my son long enough? Did I feed him cow’s milk too soon? Was vaccinating on schedule a bad thing? Was there a family history that we missed? I know that I didn’t feed him too much junk.  I know that it wasn’t two years of chocolate bars that did this to him but maybe that first time that he seemed off months before I should have realized that he was seriously ill and that it wasn’t just the flu?

Eventually I realized that I couldn’t spend all of my energy feeling guilty about the “what ifs”.  Diabetes took up enough of my energy on its own…but that led me to a new source of guilt.  Had I denied my other son because diabetes took so much of my energy? My older son never complained but it was a question that popped into my head now and again.  We went to diabetes related events and he met many new friends. He always seemed to have more fun than my child with diabetes.

I was there for my oldest son in his events and activities.  He knew that when there was an issue that required someone to stand beside him, I always did.  I was also there for the softball games, school events, report card days, sick days, and driving school.  I was pretty sure that I had successfully found a balance.

But what about a balance with diabetes and my youngest son? Did it take over everything? Did he hate me because I punished him for diabetes related offenses? Did he feel that I had robbed him of his childhood by focusing on testing and injecting when he wanted to play and forget it all?

My children seem to be well-adjusted. We have memories of family vacations and times spent with each other. We communicate regularly.  I guess I didn’t scar them too badly–I hope.I didn’t have to feel guilty about robbing my children of their childhoods.  Diabetes changed things but it didn’t destroy it.

One other area of guilt seems to always flutter on the sidelines.  I know I am not alone in with this one. I have heard other parents mention it. Its the guilt that comes when our children go away and take diabetes with them.  It’s that time when they go to the other parent’s house, spend the night with a friend or with grandparents.  It’s that time when they go to camp for a week or move away from home. It is then that a new guilt moves in.  I no longer have to think about diabetes 24/7.  Oh I still wake at night. I still look at a meal and automatically count the carbs and dose insulin in my head.  I wonder what my child’s blood glucose level is at any given time.  I worry and wonder if he is taking proper care of himself, but I have a break.  I  don’t really have to be awake at night. I can enjoy that extra glass of wine without fear of dealing with a low later that evening.  I don’t have to remember to test after that walk.  I have it easy.  It’s not fair.  The guilt becomes stifling.

As a parent, I want to carry the burden of this disease for my son but I can’t.  I want to give him a break but I can’t even if I  get one! It doesn’t seem right. I must be a terrible parent…but maybe I am not.

When my son is with me, I help him with care when he wants.  When he has an issue and he is away from me, he calls and asks for help.  We talk about readings…when he is ready.  We talk about other things as well.  I work hard to make diabetes the last thing I ask him about not the first.

Guilt doesn’t get me anywhere. It’s a backwards looking emotion. Life didn’t come with a guidebook.  My children were not born with a manual attached.  I do my best. We all do.  Guilt must be released not harbored…and I do.  I have made mistakes but my kids are okay.  They are strong.  They are relatively healthy.  They are smart.  They do me proud.  Why waste energy with guilt? Move forward and smile.  It’s the only way to go.

Gifts like this make me realize that all is very well indeed.

Gifts like this make me realize that all is very well indeed.

The Weight of Guilt

As I started to read Ginger Vieira’s book Diabetes Burnout, I was hit by an incredible sense of guilt.  Did I push my son too hard? Did I expect too much? I was later vindicated but I was reminded  the overwhelming guilt that comes with being a parent of a child with diabetes…or maybe its just me.

Well meaning people share with us many “reasons” that children develop diabetes and somewhere in the back of our mind’s ( well my mind anyway) we ask was that it? Was that why my son developed this disease? Did I not breast feed my son long enough? Did I feed him cow’s milk too soon? Was vaccinating on schedule a bad thing? Was there a family history that we missed? I know that I didn’t feed him too much junk.  I know that it wasn’t two years of chocolate bars that did this to him but maybe that first time that he seemed off months before I should have realized that he was seriously ill and that it wasn’t just the flu?

Eventually I realized that I couldn’t spend all of my energy feeling guilty about the “what ifs”.  Diabetes took up enough of my energy on its own…but that led me to a new source of guilt.  Had I denied my other son because diabetes took so much of my energy? My older son never complained but it was a question that popped into my head now and again.  We went to diabetes related events and he met many new friends. He always seemed to have more fun than my child with diabetes.

I was there for my oldest son in his events and activities.  He knew that when there was an issue that required someone to stand beside him, I always did.  I was also there for the softball games, school events, report card days, sick days, and driving school.  I was pretty sure that I had successfully found a balance.

But what about a balance with diabetes and my youngest son? Did it take over everything? Did he hate me because I punished him for diabetes related offenses? Did he feel that I had robbed him of his childhood by focusing on testing and injecting when he wanted to play and forget it all?

My children seem to be well-adjusted. We have memories of family vacations and times spent with each other. We communicate regularly.  I guess I didn’t scar them too badly–I hope.I didn’t have to feel guilty about robbing my children of their childhoods.  Diabetes changed things but it didn’t destroy it.

One other area of guilt seems to always flutter on the sidelines.  I know I am not alone in with this one. I have heard other parents mention it. Its the guilt that comes when our children go away and take diabetes with them.  It’s that time when they go to the other parent’s house, spend the night with a friend or with grandparents.  It’s that time when they go to camp for a week or move away from home. It is then that a new guilt moves in.  I no longer have to think about diabetes 24/7.  Oh I still wake at night. I still look at a meal and automatically count the carbs and dose insulin in my head.  I wonder what my child’s blood glucose level is at any given time.  I worry and wonder if he is taking proper care of himself, but I have a break.  I  don’t really have to be awake at night. I can enjoy that extra glass of wine without fear of dealing with a low later that evening.  I don’t have to remember to test after that walk.  I have it easy.  It’s not fair.  The guilt becomes stifling.

As a parent, I want to carry the burden of this disease for my son but I can’t.  I want to give him a break but I can’t even if I  get one! It doesn’t seem right. I must be a terrible parent…but maybe I am not.

When my son is with me, I help him with care when he wants.  When he has an issue and he is away from me, he calls and asks for help.  We talk about readings…when he is ready.  We talk about other things as well.  I work hard to make diabetes the last thing I ask him about not the first.

Guilt doesn’t get me anywhere. It’s a backwards looking emotion. Life didn’t come with a guidebook.  My children were not born with a manual attached.  I do my best. We all do.  Guilt must be released not harbored…and I do.  I have made mistakes but my kids are okay.  They are strong.  They are relatively healthy.  They are smart.  They do me proud.  Why waste energy with guilt? Move forward and smile.  It’s the only way to go.

Gifts like this make me realize that all is very well indeed.
Gifts like this make me realize that all is very well indeed.

Dealing with Diabetes Burnout..A Book Review

Ginger Vieira recently released her third book called Dealing with Diabetes Burnout,  How to Recharge and Get Back on Track When You Feel Frustrated and Overwhelmed by Diabetes. I was once again lucky enough to be given a copy of the book to read. As I prepared to write my overview of the book, I  took a glance at how many pages of interest I had marked off. A lot! That means that this was a wonderful book with many excellent points for me to share!

I really wasn’t sure what to expect when I began reading this book.  What would I learn? Would much of it apply to me? Who would this book fit? Well, I learned quite a bit. I gained a new perspective and I can think of quite a few people who this book would help.  Most importantly however, it is a great hands on resource for people who live with diabetes–Type 1 or Type 2.

This book doesn’t just give you a bunch of information and feel good stories.  It is filled with exercises and activities that Ginger challenges you to do to help you deal with your own diabetes burnout.  She doesn’t chastise you for the fact that “I haven’t checked my blood sugar in three weeks (ehh…months)” –a fabulous title of one of the chapters of the book.  Instead she reminds you that you are being asked to manage something that your body is supposed to do on its own based on a variety of other physiological and hormonal processes. (page 21).  She tells  you to look at all of the great things that you are doing and praise yourself for the one thing you are getting right. “developing the ability to step back and see what wasn’t working–rather than blaming yourself–is the trick to creating a new plan that will lead you to your goal.” (Page 33)

This theme is further emphasized by all of the great chapter titles like “I want to be perfect by tomorrow (or I’m giving up!) where Ginger notes that some times are not ideal for change. She suggests that you create your own personalized “pick up plan” to help you refocus in times of stress.

Ginger offers tips on how to handle support from well-meaning people who really don’t get it as well as how to best make use of people who do get it and do want to help.  She shows you how to use technology to make your life a bit easier as well as great real life tips for those of us who would just like to live a healthier lifestyle but find ourselves giving up too soon.

Being a parent of a child with diabetes, as I began to read this book I felt horrible.  I was a failure.  I was the parent who struggled to understand how you could “forget” to do something that you have done all of your life.  Did I push too hard?  Should I have been calmer when his doctor praised him for testing more than once per day and I was looking to see 8-12 readings per day? I was sure that I had totally ruined my son’s childhood.

Thankfully I got some reprieve from my incredible guilt when I moved into the chapter called “Crazy Little Thing Called Love”.  Here Ginger talks about raising a child with diabetes and how truly difficult it is to do. She highlights many of the fears that we have.  The torture we go through when our child is low and disoriented or the failure we feel when they are high and we are positive that we alone are responsible for the kidney damage they may one day have. She offers more wisdom and options to dealing with our children and how to get through to our teens. I was left knowing that I hadn’t scared my child completely…well at least not in that realm.

Nearing the end of the book, I came across one of the very best quotes I have ever read on the issue of diabetes care and one that should be framed and read by everyone dealing with this disease (especially us guilt laden parents)….
“Doing the best any of us can do in life with diabetes does not have to mean perfect blood sugars all the time. Sometimes our best is awesome and sometimes it’s not quite so awesome but it’s still our best in that moment.  And that’s okay.  It has to be, because “perfection” is a crazy expectation.”  

Dealing with Diabetes Burnout is a fabulous resource. If I had one criticism of the book it would be having too many personal stories illustrating various points in the book. Reading through page after page of examples of other people’s burnout was taxing on my incredibly shrinking attention span. That said however, I have no clue as to how I would have cut back on some of the submissions that were used.  They were often very powerful stories that needed to be shared.

Who should read this book? Anyone living with diabetes because as Ginger Vieira notes, at one point you will go through some form of burnout.  To a lesser degree, parents of children of diabetes (no matter what age your “child” may be).  This book will give you insight into the emotions that your child may be dealing with and will also give you a few tips to help you in your own life as well.
diabetes burnout book

Dealing With Diabetes Burnout….A book review

Ginger Vieira recently released her third book called Dealing with Diabetes Burnout,  How to Recharge and Get Back on Track When You Feel Frustrated and Overwhelmed by Diabetes. I was once again lucky enough to be given a copy of the book to read. As I prepared to write my overview of the book, I  took a glance at how many pages of interest I had marked off. A lot! That means that this was a wonderful book with many excellent points for me to share!

I really wasn’t sure what to expect when I began reading this book.  What would I learn? Would much of it apply to me? Who would this book fit? Well, I learned quite a bit. I gained a new perspective and I can think of quite a few people who this book would help.  Most importantly however, it is a great hands on resource for people who live with diabetes–Type 1 or Type 2.

This book doesn’t just give you a bunch of information and feel good stories.  It is filled with exercises and activities that Ginger challenges you to do to help you deal with your own diabetes burnout.  She doesn’t chastise you for the fact that “I haven’t checked my blood sugar in three weeks (ehh…months)” –a fabulous title of one of the chapters of the book.  Instead she reminds you that you are being asked to manage something that your body is supposed to do on its own based on a variety of other physiological and hormonal processes. (page 21).  She tells  you to look at all of the great things that you are doing and praise yourself for the one thing you are getting right. “developing the ability to step back and see what wasn’t working–rather than blaming yourself–is the trick to creating a new plan that will lead you to your goal.” (Page 33)

This theme is further emphasized by all of the great chapter titles like “I want to be perfect by tomorrow (or I’m giving up!) where Ginger notes that some times are not ideal for change. She suggests that you create your own personalized “pick up plan” to help you refocus in times of stress.

Ginger offers tips on how to handle support from well-meaning people who really don’t get it as well as how to best make use of people who do get it and do want to help.  She shows you how to use technology to make your life a bit easier as well as great real life tips for those of us who would just like to live a healthier lifestyle but find ourselves giving up too soon.

Being a parent of a child with diabetes, as I began to read this book I felt horrible.  I was a failure.  I was the parent who struggled to understand how you could “forget” to do something that you have done all of your life.  Did I push too hard?  Should I have been calmer when his doctor praised him for testing more than once per day and I was looking to see 8-12 readings per day? I was sure that I had totally ruined my son’s childhood.

Thankfully I got some reprieve from my incredible guilt when I moved into the chapter called “Crazy Little Thing Called Love”.  Here Ginger talks about raising a child with diabetes and how truly difficult it is to do. She highlights many of the fears that we have.  The torture we go through when our child is low and disoriented or the failure we feel when they are high and we are positive that we alone are responsible for the kidney damage they may one day have. She offers more wisdom and options to dealing with our children and how to get through to our teens. I was left knowing that I hadn’t scared my child completely…well at least not in that realm.

Nearing the end of the book, I came across one of the very best quotes I have ever read on the issue of diabetes care and one that should be framed and read by everyone dealing with this disease (especially us guilt laden parents)….

“Doing the best any of us can do in life with diabetes does not have to mean perfect blood sugars all the time. Sometimes our best is awesome and sometimes it’s not quite so awesome but it’s still our best in that moment.  And that’s okay.  It has to be, because “perfection” is a crazy expectation.” 

Dealing with Diabetes Burnout is a fabulous resource. If I had one criticism of the book it would be having too many personal stories illustrating various points in the book. Reading through page after page of examples of other people’s burnout was taxing on my incredibly shrinking attention span. That said however, I have no clue as to how I would have cut back on some of the submissions that were used.  They were often very powerful stories that needed to be shared.

Who should read this book? Anyone living with diabetes because as Ginger Vieira notes, at one point you will go through some form of burnout.  To a lesser degree, parents of children of diabetes (no matter what age your “child” may be).  This book will give you insight into the emotions that your child may be dealing with and will also give you a few tips to help you in your own life as well.

diabetes burnout book

Why should you care about access to insulin pumps?

Three weeks ago, I was asked to start a petition in support of removing age restrictions on the current insulin pump program here in Newfoundland and Labrador. It seemed like a great idea. As an advocate, I know the value of public support for a cause. This was an ideal way to raise awareness of the issue.

That was three weeks ago. Today, I am amazed by the response. We now have well over 550 virtual signatures and most of those come from people living in Newfoundland and Labrador.

The online support is amazing. I can’t begin to describe the feeling when I see a steady stream of emails telling me that Karen, Kristen, Kevin, John, and Scott have all just signed the petition only to go back to my mail two hours later and see that Anne, Stewart, James, and Paula also signed. These aren’t just people who I have tormented and harassed until they signed. These are people who you have shared the petition with and they wanted to sign.

In case that wasn’t moving enough, I have also been following along with the “reasons why” people support the petition. There are many people who state that they are signing for their friend, their mother, their brother, their daughter. One father writes that he is living with diabetes and that his children deserve to have him around for a lot longer. I have read of people having to use older pumps and are praying that they will hold out because they can’t afford a replacement and no longer qualify for provincial assistance. The comment from Matthew truly said it all “Diabetes on insulin pump in a few months it is going to be gone because of this”. I have read every single comment and each one motivates me to continue. They motivate me to keep sharing the message.

I know that some people are thinking, “well I don’t have diabetes and this really is sad but why do I really care? They can still live so what’s the big deal? We can’t always get what we want.” The big deal is that many people living with Type 1 diabetes would be healthier and more productive if they had the option of using an insulin pump. If they were healthier and happier, they would probably have fewer sick days off from work. If they had fewer sick days, they would be earning more money and paying more personal income tax. If they are paying more taxes then that is more money in the provincial coffers to cover things like education, transportation, and health care.

Now those same people are probably thinking, “but there people were the ones draining the health care budget to start with. Where is the benefit there?” Well the benefit is in the fact that an insulin pump, especially when used with a Continuous Glucose Monitor, has been shown to improve diabetes control. Improved diabetes control equates to a significant reduction in diabetes related complications such as kidney failure, heart disease and lower limb amputations. People using intensive diabetes management through insulin pump therapy are less likely to be hospitalized during the year (one hospitalization for diabetic ketoacidosis for example will cost over $20,000 per admittance and the average person with diabetes may be hospitalized four times per year).

To further illustrate the benefits of an insulin pump and continuous glucose monitor, let’s consider the fact that studies have shown that people living with diabetes often begin to exhibit signs of complications after living with the disease for 15-20 years (my 16 year old son has seen living with diabetes for over 14 years already). Approximately 25% of those people will develop kidney disease and require hemo-dialysis which costs approximately $263.000 per year. Those people on hemo-dialysis will most likely only live for another 8 years but during that time they will have cost the health care system over $2 million. Ironically $2 million is the projected cost of removing the age restriction from the NL insulin pump program. This means that if you save eight people with diabetes from kidney failure each year, you will have funded the entire insulin pump program.

Kidney failure is not the only medical issue that people with diabetes must fear. 2% of people with diabetes will be blind after 15 years. They are 83% more likely to experience cardiovascular disease than their cohorts and the list goes on as do the health care costs (or savings if everyone had access to improved technology).

The benefits of insulin pump therapy and the use of continuous glucose monitors have been well documented over the years. The improvement in quality of life as well as overall health for people living with diabetes cannot be disputed. In a country standing at the forefront of medical research and innovation, access to insulin pumps, continuous glucose monitors, and their supplies should not be limited to the very rich or the very well insured.

Please sign and share the petition and continue to raise awareness about this issue. http://chn.ge/RRGWDX
NL pump petition

Diabetes Greeting Cards?

Yes, you read that right…Diabetes Greeting Cards!

I often get requests from people who want to share a post on my blog. They want to write about how to cure your diabetes by eating their miracle food. They want to tell my readers all about their awesome socks that will instantly cure all that ails you and things that you didn’t even know were ailing you. Once in a blue moon, someone will send me something relevant and I will think about posting what they send me.

A few weeks ago I received a request from a woman who wanted to promote her greeting cards. My first thought was…wow! She called me Barb and not “Dear Advocacy”. I decided to read a bit further. They had a really interesting concepts, they were cards for people with diabetes but they weren’t stupid. They were actually kind of cute. Enough from me on the subject though….

I’m Nene Adams and I’m an insulin dependent Type II diabetic. I’ve also been a greeting card designer since 2007.

Following a stay of several weeks in the hospital for a diabetes related medical problem, I was inspired to do some research into diabetes. I learned a lot, including the fact that there seemed to be very few greeting cards designed specifically for diabetics.I thought there needed to be more and better choices for a group of people the mainstream card retailers were ignoring.

Me and my partner, Corrie Kuipers, have teamed up with a few other talented artists – Doreen Erhardt, Betsy Cush and Sharon Fernleaf – to create a line of greeting cards for children and teenagers/young adults with diabetes. The messages are positive and supportive, not just a generic “get well.” The images are colorful and often humorous in each artist’s distinctive style.

We hope these cards will help inspire and encourage diabetic kids and their loved ones.

http://www.greetingcarduniverse.com/get-well-feel-better-cards/diabetes

Diabetes Greeting Cards

Yes, you read that right…Diabetes Greeting Cards!

I often get requests from people who want to share a post on my blog. They want to write about how to cure your diabetes by eating their miracle food. They want to tell my readers all about their awesome socks that will instantly cure all that ails you and things that you didn’t even know were ailing you. Once in a blue moon, someone will send me something relevant and I will think about posting what they send me.

A few weeks ago I received a request from a woman who wanted to promote her greeting cards. My first thought was…wow! She called me Barb and not “Dear Advocacy”. I decided to read a bit further. They had a really interesting concepts, they were cards for people with diabetes but they weren’t stupid. They were actually kind of cute. Enough from me on the subject though….

I’m Nene Adams and I’m an insulin dependent Type II diabetic. I’ve also been a greeting card designer since 2007.

Following a stay of several weeks in the hospital for a diabetes related medical problem, I was inspired to do some research into diabetes. I learned a lot, including the fact that there seemed to be very few greeting cards designed specifically for diabetics.I thought there needed to be more and better choices for a group of people the mainstream card retailers were ignoring.

Me and my partner, Corrie Kuipers, have teamed up with a few other talented artists – Doreen Erhardt, Betsy Cush and Sharon Fernleaf – to create a line of greeting cards for children and teenagers/young adults with diabetes. The messages are positive and supportive, not just a generic “get well.” The images are colorful and often humorous in each artist’s distinctive style.

We hope these cards will help inspire and encourage diabetic kids and their loved ones. http://www.greetingcarduniverse.com/get-well-feel-better-cards/diabetes