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A Type 1 Diabetes Guide to the Universe…Book Review

A Type 1 Diabetes Guide to the Universe
A Type 1 Diabetes Guide to the Universe

A few months a book came out by one of my favorite speakers.  Joe Solowiejczyk was first introduced to me through a mutual friend a number of years ago.  I didn’t know what to do about my son who has diabetes.  We seemed to be constantly battling and getting nowhere.  A phone call was arrange and Joe helped to put me on the right track.  A few years later, I would get the privilege of listening to him speak at a CWD Friends for Life Conference.

Having had such a positive response in my interactions with Joe, I was very excited to hear that he had a book coming out. I was even more excited when I was asked to read and review the book!

I have never read a book like this before. You purchase it online and read it through iBooks.  (I sadly can’t find it available in any other format) The unique part of this book is that it is not all text, there is a lot of amazing videos that you can watch as you read, before you read, or after you read.  I watched as I read which resulted in my taking a lot longer to read this book than I normally would.

The videos were amazing! Not only was it wonderful to see so many faces that I knew, it was touching to watch.  From the very beginning it is hard to stem the tears as parents share the powerful emotions they first had upon hearing that their child had Type 1 diabetes.  Joe reminds readers who may just be beginning this journey that while they will experience a sea of intense emotions, they will get through.

Along with the text and videos, there are also exercises to help you as well.  In the chapter on “The First Days” Joe provides an exercise about your feelings surrounding your child’s diagnosis.  He reminds parents to work together so that you can carve out a bit of time to recharge along the way.

This unique book gives you fundamental basics on the physiology of diabetes, as well as helping to mend your spirit.  He examines everything from diet and exercise to sick day management and insulin sensitivity factors. In chapter 7, he sums up the theme of the book perfectly “What we’re talking about here, and throughout the entire book, is to provide you, the parent with enough practical management information and management principles that allow you to feel like you’re in the “driver’s seat” enough to be able to feel like you can continue to parent effectively WHILE managing the diabetes competently at the same time!”

As I mentioned, this book isn’t all about Joe Solowiejczyk and his thoughts and experiences, it’s also about real people and real families.  He allows them to talk about their experiences and give YOU advice as well.  For me, it was in those videos that some of the best advice was found.

Kyle Cochrane, American Ninja Warrior competitor and all around great young man, said what many of us already know, that “diabetes is only given to the strongest people”.  Another young man gave a word of warning to those who are newly diagnosed by suggesting that they not look for a career in a chocolate factory!  A family simply stated that “if Joshua could do it without diabetes, then he can do it with diabetes…we will make sure that that happens.”–Truly fabulous!

One of the best things about these interview with real people was that all of the family was interviewed.  You got to see tiny siblings and siblings that have been living with diabetes for years.  Each one of them had moments when they felt second to the child with diabetes and it was heartbreaking to watch.

As a parent, it was great to listen to teens who admitted to messing up now and then.  They also admitted to relishing the moment when they got to leave from under their parents’ wings.  They gave brilliant advice on how parents may need to back off and teens may need to realize that what Mom/Dad are doing is completely out of love. They discussed trying to let diabetes come second…only to realize that life was much better when it was dealt with first.

Listening to the daughter of a long time friend say that she would forget to bolus when she moved away to go to school oddly made my heart sing.  As I said, I have known this family for a long time.  They are amazing and their daughter showed me that my son (who also forgets to bolus sometimes) is human and not just forgetting to stress me out. She said that despite a lifetime of injections she still hates needles!  My son FREAKS out, completely stresses, at having to have blood work done despite also having had a lifetime of needles. These few little anecdotes made me feel connected to both the book and the families involved.  After all of these years and all of the connections that I have made, that was truly special to have this connection also come from a book!

I am not normally a person to watch videos.  I hate to look it up on YouTube if I can read about it instead.  This book was different however.  Seeing people share their stories added a different dimension to this book–one that added so much more to the experience.

That is what reading A Type1 Diabetes Guide to the Universe is…an experience to be had by the newly diagnosed, those sending their children to school for the first time, those sending their teens to parties, those sending young adults off to university. In other words, this is a book for every stage of your life as a family with Type 1 diabetes.

Too Sweet…Book Review

The ask to read the book “Too Sweet” came from someone that I had never heard of before. It was self-published with a title that made me nervous. Too Sweet? Was this going to be a book to toss in the “maybe one day if I am so bored that its read book or the encyclopedia” pile? I really wasn’t sure until I opened the first few pages.

I was instantly greeted with light and humorous prose. After a wonderful welcome to a disorder that “is part of your life forever”, I was reminded that a laughter and a positive attitude are key to making life with diabetes more manageable. I was instantly sucked in and eagerly looked forward to seeing what the rest of the book had in store for me.

As a parent of a child with diabetes, I cannot read a book about diabetes and “know” what the person with diabetes really feels.  I can know the pain and broad range of emotions that a parent goes through but its not my disease and I am always interested in tips for parents or what other parents have experienced.  Too Sweet is written by Laura Kronen who tells us that she was not diagnosed with type 1 diabetes until she was in university.  She states her parents had a much more difficult time accepting the diagnosis than she did. They felt guilty and she felt it was okay to play on this guilt now and then. I literally laughed out loud when I read that Laura felt that her diabetes was her parents’ fault because they supplied her with faulty DNA! She felt that making them feel guilty now and then keeps things “balanced and gives her added attention when she feels particularly needy”.

This blunt, funny dialog  continues throughout the book. Whether she is discussing how finger pricks have destroyed her finger prints and makes her perfect criminal if her book sales fail or the aggravation that comes with the dreaded wasted test strip, you read and learn with a smile on your face.

Laura gives those of us who don’t live with diabetes a good idea of how lows feel by giving them great names like the surprise low, the cranky low, the full but still have to eat low and many more. She also offers some very real advise on everything from pumps (which are not for everyone and she will tell you why) to the glycemic index to alcohol consumption.  She also offers us a glib reminder of how insanely costly dealing with type 1 diabetes can be in a section called  “I need more supplies. Do I have enough money in my checking account to cover them today?”

Too Sweet also provides some great advice on how to handle the emotional side of diabetes. From getting rid of negative friends to learning from your mistakes, Laura makes you laugh as well as makes you think.

I opened this book not expecting much so it didn’t take a lot to exceed my expectations but it did and then some.  As I read each page, I was drawn in deeper and deeper. I appreciated the author’s attitude and ability to make me laugh.  If you want to learn a bit more about living with diabetes and you want a relatively light way to do it, then I would definitely suggest picking up Too Sweet and giving it a read today. too sweet

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.

eating

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

Balancing Diabetes…A Book Review

A number of months ago, I was honored when the folks at Spry Publishing contacted me and asked if I would be interested in reviewing an advanced copy of Kerri Sparling’s new book, Balancing Diabetes. I have enjoyed Kerri’s blog but I honestly wondered about a book that suggested that you could find some balance in a life with diabetes.  What pat formula would she suggest?

Any fears or concerns that I had were quickly pushed aside as I began to devour this book. As with any book that I read and am going to review, I bookmark passages and pages with little notes of why this sentence or paragraph moved me.  In looking back at Kerri’s book, I literally have over 50 different sections marked off for mention! This has to be a great book…and it is.

As  a mother of a child with diabetes, I was also worried that I would be reading this book from the outside. Kerri is a person with diabetes and this book would be all about her right? Wrong. By page 9 Kerri’s mother shares her feelings and I could hear myself in her words “…I didn’t know what we were getting into. I just thought, Okay let’s go deal with this, whatever this is.”  Kerri’s mom goes on to say that she handled what she was given but did not want any more.  She would learn in stages because the get everything at once would be overwhelming. I felt the same way when my son was diagnosed.  I was on overload and autopilot for months. Slowly I would add knowledge and information when I could handle it…this was how we, as parents, found balance with diabetes.

This book brought out many emotions.  Reading about the burden of being shown and repeatedly told about your own mortality at such a young age made me wonder how my son feels? Is he still an immortal teen or does he have Kerri’s “heightened awareness of how vulnerable” her health was? Either way, does he also know, that I share Kerri’s mother’s feelings when Kerri told her that she didn’t care if she was high and her mother responded “For now, I’ll care enough for both of us.”  Yes, I cried reading this.

But like the title, this book has balance.  While there are many very serious conversations, humor creates a fabulous balance and brings a different kind of tears…the ones you get from laughing! Kerri’s wonderful sense of humor shines through in this book.  The topic of sex is never an easy one but Kerri takes you past the embarrassment and makes you laugh with her candor.  She shares the story of her first serious low  with her husband. It took place after they had made love and her husband lays claim  to responsibility for it happening!

Besides the amazing humor and the walk through Kerri’s life, she brings in the experiences of many other people who live with diabetes to provide some fabulous tips for living a full life with diabetes.  They  takes us through diagnosis, the trials of teens, life as a young adult, dating, marriage and even pregnancy.  Kerri talks about the sense of helplessness that diabetes can create at times–for the person with diabetes, their partner, and even for the parents.  Sean Oser provides insight on dealing with blood sugar readings, “There are no good or bad blood sugars; every result is just a number, and it tells us what to do next.” This is a motto that I have tried to instill in my own son for years.

Balancing Diabetes looks at pump starts, travel and advocacy.  Each topic is looked at both from Kerri’s perspective as well as that of  many other people in the diabetes community.

The most poignant section in the book for me, was when I saw a person state that they do NOT believe that you can find a balance when living with diabetes.  What? But the title of the book says that you will.  How could this happen? How could someone state that balance cannot be achieved? Well, that is the beauty of this book! It does not show one size fits all, pat answers. This book shows you real life. It shows real pain and real accomplishments. It emphasizes that diabetes really is a “your diabetes may vary” kind of disease.  How wonderful!

This book is a fabulous balance of perspectives and stories.  It does not tell you one way to “do it right and achieve balance”, it shows you a variety of approaches to a variety of topics and what works for different people.  The best thing is that it also tells you that you never fail. If you have been really bad about taking responsibility for your diabetes care, cut yourself some slack and make a change now.  It’s not too late. If you have been diagnosed with diabetes related complications, don’t beat yourself up. It’s not your fault.  Brush yourself off and move forward. You have got this handled. You are amazing!

Balancing Diabetes is a wonderfully written book filled with a balance of real life events that show that we are not alone–whether we live with diabetes, are parents of a child with diabetes, or just love a person with diabetes. Now hurry up and order your copy because I noticed that Amazon Canada was almost out already!

balancing2

 

Until There is a Cure–A Book Review

A few months ago I was asked to read and give my opinion on Gary Scheiner’s latest book.  I have listened to Gary speak at Children with Diabetes Conferences. I have spoken to him on  number of occasions.  I have heard the praises of his book “Think Like A Pancreas” and continue to swear that I will read it soon, so I was really excited to get the chance to read Until There is a Cure. I had no idea of what I should expect of the book. I wasn’t sure who the target audience was and wondered who would benefit the most from its wisdom? I began the book eager to see what I would learn. I love to read. I love to learn.  I love to find new ways to make my son’s life easier and more complete.  Its not surprising then that by the end of chapter one I had many passages highlighted and marked to come back to later.

cure bookIn the first chapter Gary aptly points out that it is unrealistic to expect your doctor or nurse to be the expert in your diabetes care. It is your job to do so.  It is your job to learn and become educated. Until There is a Cure allows you to do just that. Gary wisely warns that you must strike a balance in your diabetes care and tells the reader…”If you put more time and energy into taking care of your diabetes than you put into your family, work, or social life, something needs to change.”

 

By the second chapter, we get a lesson in Diabetes 101.  While most of it was review for those of us who have been playing this game for too many years already, there was still information to learn and understand. Information on dietary supplements, exercise, stress and depression help to make a demanding condition more understandable.

As the book moved on to discuss insulin and delivery, I was very intrigued.  It was great to see the “Trend” boxes with short tips and bits of information. The box which highlighted my own personal belief that “The type of pump should be chosen by the person who will be using it, not his or her physician.” made my day.  This was also a great section for those living with Type 1 as well as Type 2.  In reading it, I realized quickly what type of therapy I would want if myself or a loved one were diagnosed with Type 2 diabetes.

By chapter four we are over halfway through the book and get some great tips on the many glucometers available as well as some information on various Continuous Glucose Monitors.  I was a bit surprised when I read that “meters themselves cost about the same as they did 20 years ago, and test strip costs have actually increased.”  I see that meter pricing has not really changed although personally, we have been given a large number of monitors because of the large number of test strips that we use on a monthly basis.  Again personally, I have seen a slight decrease in test strips.  Perhaps this is a geographical difference and the drop is not overly significant but test strips which consistently cost at least $1 per strip, now cost me around 80 cents. Not a huge savings but I will take what I can!

The second to last chapter of this book deals with a subject that none of us want to look at.  It is a chapter that those of us who have been in this game for a double digit number of years fear.  This is the chapter on complications, but Gary doesn’t dwell on the negative.  This chapter is titled “Advances in Fighting Complications”  and addresses how we can be proactive in our care.  Instead of leaving you with a feeling of inevitable despair  there is hope offered here.

As I finished the book, I was exhausted to think of how complicated dealing with diabetes was.  The reader is taken on a journey through the glycemic index, graphs on glucometers, insulins, vitamins, exercise, Alzheimer disease, depression,  Diabulimia CGM technology, how to fight complications and finally where to find support .  Despite the daunting content, the book was surprisingly light and easy to read. It is a great resource for the newly diagnosed Type 1 or Type 2 person living with diabetes.  It also provides some great information for veterans and those who are diabetes information junkies.