Wednesday, August 13, 2014

What's in a Name?

If there is one positive thing to come out of the tragic passing of Robin Williams, its the fact that so many people are talking about depression.  There is a huge effort to help people to understand the dark insidious nature of this disease--and the fact that it is a real disease not just a feeling of melancholy that we all experience now and then.

Clinical depression is a prolong sadness that has a chemical component that most often requires specific medications to begin to improve. It requires the use of a medical doctor and can be physically debilitating.

The most interesting thing that I have read in the past 36 hours or so since I heard about Robin Williams' passing is a debate that I hear in the world of diabetes all of the time--people would pay more attention to this disease if it had a different name.  People think of depression as fitting things like "rain on your wedding day and a free ride when you already paid" to quote Alanis Morrisette.  These are not exactly issues that lead a person to take their own life...unless they are already experiencing a much deeper pain.  There is a feeling of a need to disassociate the mental illness from the emotion.

In the world of diabetes, we see this same desire often.  People feel that the label Type 1 diabetes does not go far enough. It doesn't show the true nature of this disease.  It does not remove itself far enough away from another condition that is often associated with poor diet and the ability to be "cured" with diet and exercise.

Personally I am always led back to Shakespeare when this debate is brought up.  "What's in a name? that which we call a rose By any other name would smell as sweet."  Okay, diabetes is not as pretty as a rose and when you can smell "sweet" when dealing with diabetes we know that you are in serious trouble but you get the point. A name means nothing. It is all about the awareness.

Type 2 diabetes is not limited to people who are overweight. It is not magically cured by diet and exercise, but it is able to be managed that way unlike Type 1 diabetes.  Type 1 diabetes will not be cured with insulin.  Wearing an insulin pump does not mean that you don't have to think about diabetes ever again.  Misconceptions.  Fallacies. Misinformation.  It happens with every disease.

The general public is ignorant about many things. I knew nothing about diabetes until it tried to steal my son in March of 2000.  I now know more than some medical professionals but I know little about Multiple Sclerosis or other diseases. We educate ourselves to what is important to us. It is our job as people who have become experts is to educate the outside world to the important parts of our conditions.

They do not need to know how to carb count but we must work to teach the general public that there is no known cure for diabetes...unless you are a mouse.  An insulin pump does not mean that you have diabetes "really bad" and it does not cure your diabetes. It is a management tool that requires work and fine-tuning but is preferable by many to help maintain better blood glucose levels.  Myths must be debunked to create better understanding and support.

Much of the same can be said for depression. It is important that the stigma be removed--just as the stigma of diabetes needs to be gone.  No one "caused" either condition.  Both require medical attention and serious work to be able to manage.  Ironically depression is twice as common in people living with diabetes as it is in the general population and if you have depression but don't currently have diabetes, don't worry because people living with clinical depression are more likely to develop type 2 diabetes!

Robin Williams is getting people talking about depression. Mary Tyler Moore, Brett Michaels, and Nick Jonahs have all done the same thing in the world of Type 1 diabetes.  Our goal as people who live with these conditions each day is to make sure that the conversations do not end and to take this opportunity to educate people on the realities and dispel the fantasies.
rosePlease remember that if you are experiencing a prolonged sense of sadness that is impacting your daily routine or having thoughts of suicide, please contact a medical professional. If you are having trouble dealing with life with diabetes, a counselor or life coach may help you to find new coping mechanisms.

Tuesday, August 12, 2014

Diabetes and Depression

I don’t want to get out of bed. What difference does it make any way? I am tired. I don’t matter. I can’t take it any more. I can’t lift this dark cloud that hangs over me. I am poor company. My family is much better off without me. I don’t make a difference in the world. I am just taking up space. No one would miss me. What is the point?


Does any of that sound familiar? Many of us have had some or all of these thoughts to varying degrees. Yesterday’s passing of Robin Williams showed us that money, fame, and talent do not protect you from the devastating reach of depression. Sadly, if you live with diabetes, you are also twice as likely as the rest of the general population to be effected by depression.


The Diagnostic and Statistical Manual of Mental Disorders characterizes clinical depression “as having five of more of the following symptoms during a 2 week period and represents a change from previous functioning with at least one of the symptoms being a depressed mood or loss of interest or pleasure.  The other symptoms included a diminished interest or pleasure in almost all activities most of the day, may appear tearful,  significant weight loss or gain, insomnia or hypersomnia nearly every day, psycho-motor agitation or retardation never every day, fatigue or loss of energy nearly every day, feeling worthless or excessive or inappropriate guilt, diminished ability to think or concentrate, or indecisiveness, recurrent thoughts of death, recurrent suicidal ideation without a specific plan or suicide attempt.  These symptoms are not brought on by medication or other physical condition and impair ones social, occupational or other important areas of functioning. ”


Everyone has those days when the world seems dark and bleak.  People living with diabetes however are cautioned by experts to watch a bit closer for signs of clinical depression in their own lives.  Gary Scheiner mentions this issue in his book “Until There is a Cure“.  He and others note that the pressure that comes with diabetes care, the need to “get it right”, and be the perfect diabetic can lead to failure and a deep sadness that can spiral into clinical depression.


We are also reminded that the people with diabetes are not the only potential victims.  Parents of children with diabetes may also find themselves in a pit from which they cannot see the light. We often experience our own guilt for first somehow allowing our child to develop this disease. There is the guilt over nagging them to test or inject.  The feelings that we are robbing our children of a “normal” childhood by forcing them to take responsibility for their diabetes care too soon can be overwhelming. The list of reasons for sadness go on in both those living with diabetes and those who care for them. The challenge is to recognize the symptoms and get help.


The Mayo Clinic feels so strongly in this that their website specifically cautions people living with diabetes to be very alert to signs of depression.  If you feel that you are suffering from clinical depression, please see your doctor.  Just as you take insulin to deal with the imbalance in your body thanks to a non-functioning pancreas, it is important to take medication that can help to work with brain chemistry that has somehow found itself out of balance as well.


Counseling, therapy, and even life coaching can help to deal with the daily stressors of diabetes care.  They can help you to deal with triggers and create coping strategies but they will not fix the chemistry if you suffer from clinical depression. If you are struggling with a diabetes diagnosis, please look for support from others. If you feel that the depression and sadness has become prolonged or overwhelming, please see your doctor. Together you can  create a plan to help you find your way forward again.

robin williams
Thank you for the years of enjoyment and sharing your talent. May you find the peace in death that you were unable to find in life. RIP

Wednesday, August 6, 2014

Summit Diabetes

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


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


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


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


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


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


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


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


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


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


Congratulations Haley and Ethan!

summit

Friday, July 25, 2014

The Bionic Pancreas Moves Closer to Reality

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).



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.
eating

Wednesday, June 11, 2014

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.

Thursday, June 5, 2014

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