Tag Archives: living with diabetes

Diabetes changes your vocabulary

It’s funny how your vocabulary changes when diabetes enters your world.  I saw nothing wrong with sternly telling my 5-year-old son who was having a tantrum in public.. “You had better be high mister!” In hindsight, you do have to wonder how many adults were wondering why I was okay with my child being stoned.

Before diabetes, if someone said that they were low, I would have assumed that they were having a bad day.  I would have offered them a shoulder to lean on…today I am running for glucose!

Twenty years ago, if you had told me to grab a site, I would have thought you meant a campsite and would be questioning why I, of all people, would seriously want a camping site? I prefer camping in a 4 star hotel to sleeping on the ground with bugs and other creatures.

Today when I ask my son to tell me his BS, I don’t want to hear the lies that he has to tell. Gone are the days when BS meant bulls*!@.  Now it reflects important blood glucose information.

A juice box is no longer just something to have on hand when the grandchildren pop over for a visit.  Those little guys are vital, life-saving bottles of sugar to be used when my son comes in from work and says “I’m low”.  He doesn’t want a hug, he just wants that juice!

A Pump is not just for breast milk
A Pump is not just for breast milk

I recently reached out to the diabetes community  and asked what words had new meaning for them when diabetes came into their lives.  The answers were pretty funny! Check these out…

  • A D-bag is no longer a douche bag but rather that super important kit that contains all things diabetes related.
  • Checking your numbers no longer refers to wondering if you have won the lottery.  When diabetes moves in, it is hoping that you win that diabetes lottery and your readings are perfect.
  • As a parent, this was one of the hardest ones for me  to handle…”If you are not hungry then leave your salad and make sure that you finish your dessert!”
  • The question, “How is your 6 year old’s reading?” now sends one parent to automatically check their child’s CGM rather than reply as to what sort of books they are currently able to read.
  • “Make sure you wash all of the blood off of your hands.” has nothing to do with clean up after  a serious accident, applying trauma care or cleaning up a murder scene.
  • A pump isn’t just for breast milk any more!
  • “What’s your number” is not a pick up line.
  • A “Sugar Daddy” does not refer to a man who is supporting a woman in a lavish lifestyle but rather the father of a child with diabetes.

I never realized how much my vocabulary has changed since diabetes came into our lives.  Quite a few of these made me laugh as I realized how odd they must sound to the outside world!

What sort sayings or words have completely changed their meaning for you since diabetes barged into your life?

 

The Healthcare Experience…Day 4 of DBlog Week

Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with healthcare. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What’s your Healthcare Wish List or Biggest Frustration? Today is the day to share it all!

health-insurance
Today’s prompt is a tough one and a very interesting one.  I no longer have a lot of  dealings with the health care system regarding my son but over 16 years we have definitely had highs and lows.

Our initial foray into the world of diabetes, involved a horrific healthcare experience–my son was misdiagnosed, sent home and almost died.  Thankfully that was probably the worst of it (I know it couldn’t get much worse could it?).  The upside was when he was finally diagnosed, we were given a doctor who truly helped to set us on a course for success.

My son’s doctor believed in the most advanced treatments.  He encouraged me to learn and to try new things.  The rest of our diabetes care team was the same.  They taught us carb counting when others were still using exchanges.  Equally important, as I began to learn and explore the world of diabetes, they were eager to learn from me.  That was both empowering and endearing.  They cared–we were a team.

Not everyone we encountered “got it” however and it has been important for me to try to empower my son in his own care.  Soon after my son moved away, he had some sort of an attack (for lack of a better word).  The doctors worried that it was his appendix but they never did establish what had happened.  He was rushed to the hospital and the health care team attempted to manage his diabetes.  My son told them point blank “You deal with what brought me here. I will handle my diabetes.”  I was very proud.  My son is quiet.  It was very important for him to be able to do this for himself.

He is now a young adult.  He now sees a new team of doctors.  He faces new challenges…and as a mom on the sidelines it is driving me crazy.

He doesn’t feel that the new team has any idea about his diabetes care.  From my limited knowledge, I believe it is made up of people used to dealing with older adults with Type 2 not young people who have lived with Type 1 all of their lives.  Because of the area that he lives in, he is unable to “fire” them and find a new team.  I have reminded him to politely let them know that he does know what he is doing.  If he is showing them readings like I saw when he visited me, they prove that he does have this down pat.

For the moment, he is biding his time until he can move to a new team.  I am hoping to see him move back with me this fall to attend trade school. I have a friend who is now a CDE for adults. I am hoping to be able to get him in with her. I think it will be a huge help to him on all levels–she is a nurse, she lives with diabetes, and she has had diabetes since she was his age. A win-win-win.

In the meantime, the issue does continue to frustrate me.  Youth with diabetes have enough challenges.  They face many issues with transitions and lifestyle changes. It would be nice if more of their diabetes teams could be supportive and work with them.  There has to be a mutual respect of knowledge.

I continue to remind my son that the health care providers have something to offer and he must share with them that he is knowledgeable as well.  He finds it a challenge.  He feels his knowledge is far greater than their’s and sadly, it may well be true.  I then remind him that he has been very lucky. Over the years he has sat and spoke with some of the greatest diabetes minds in North America.  This is not a privilege that everyone has had.

Is there an answer? Balance.  I truly wish that there was more balance.  Patients are learning more now through their own research and through the experiences of others.  Doctors and educators are also learning but there must be a partnership.  Neither should be in a power position.  Both should be working toward the common goal of best physical and mental health for the individual.

Its too hard to count every calorie…or is it?

We are coming to that time of year when many of us will be making New Year resolutions.  I don’t do resolutions but I have decided on a few goals for 2016.  One of them is to get rid of that spare 15 pounds that plagued me all last year.

I have realized that there a variety of factors that have gone into my weight gain–change in activity levels as well as…cough…cough…age.  I therefore decided to look outside the box for some new weight loss tips.

After almost 16 years of having diabetes in the house, I have a pretty good idea of nutrition.  While I no longer have a massive driveway to clear of snow each winter, I make sure that I use the treadmill we have on a regular basis with a decent intensity.  As I said, that has not been enough so I have purchased a few books to look for other theories and alternatives.

For some reason I chose Dr. Phil’s 20/20 diet book to read.  I won’t say if its good or bad because after almost 100 pages, I still have no real idea as to what his diet and exercise plan will entail.  What did strike me was repeated reference to what it won’t entail….

“juggle Tupperware containers all day with “mini-meals”  that you weighed and calculated, you might as well quit your day job,  because your diet becomes practically a full-time job!” (from The 20/20 Diet by Dr. Phil McGraw)

He talks about how unrealistic and unsustainable it is for a person to count calories every day at every single meal.  As I was reading along, I also saw that he mentions that he has insulin resistance and diabetes.  I then began to laugh a little.

While I agree fully that counting every single calorie and weighing every single morsel of food is a challenge, it’s not an option for a person living with Type 1 diabetes. Well it is but the alternative of not doing it is lethal.

I was reminded of this again after a recent visit with my son.  He sat on the couch with a bag of chocolate covered jube-jubes.  He was eating candy after candy, enjoying the super sweet taste and giving us a review of each morsel.  I was reminded how easy it is for the average person to simply mindlessly eat.  In my son’s case, he had to count every single candy that entered his mouth.  He then had to multiply it by the carbohydrates in each candy.  Finally he would input it in his pump to have the proper amount of insulin delivered to his body.

Dr. Phil was right in part, weighing, measuring and calculating can be a fulltime job.  However, if you live with Type 1 diabetes, carb countit’s a job that you do not have the option of quitting any time soon.

 

What if it were me?

For those who don’t live with diabetes and don’t know, November is Diabetes Awareness Month. It’s a month that people who have lived with diabetes, share and work to educate the public to the realities of diabetes.

As the mother of a person with diabetes, I know a lot about diabetes. I know how dangerous it is. I know how difficult it is to maintain healthy blood glucose levels. I know that it is a 24/7 job. I understand the technology. I understand the cost but I don’t live with it going on in my own body.  I can only empathize and guess.

The other night my mind began to wander as it normally does.   I started to imagine what it would be like to be the one living with Type 1 rather than just the support system.  It was terrifying and overwhelming.

I didn’t think about the lancing of my fingers. I jump at the sound of the lancet being shot out so the process would take a ridiculous amount of time for me.

I didn’t think about injecting myself with a needle or infusion set. I cringe at needles and look away when I am getting blood work done but do what I need to do when I must.

I didn’t worry about counting carbs for every single morsel that entered my mouth. Its something that I tend to do without thinking about it after years of totalling my son’s meals.

I did think about living life on a roller coaster however.

As a parent, I know how rare it is to have more than a few hours of blood glucose levels in range at any given time.  Yes, you can be in range for 4, 6 or even 12 hours at a time but depending on the regimen and your activity level that is a lot of work to maintain.  The rest of the time you are fighting highs or lows.

Dealing with numbers is one thing.  Dealing with the physical feeling of your body being high, being low, being “normal” must be incredibly difficult.

I thought about being low. I know how horrible I feel when I am overly hungry.  I know how I feel when I have somehow missed a meal and my stomach begins to growl, my head pounds and I feel more agitated than normal.  I also know that during those times my blood glucose level is usually only hovering between 4.2 and 3.9 (75-70). In other words, just barely low if low at all.  My son can be much lower and I don’t hear him complain.  What must he and others be going through?

I thought about being high. I don’t have a lot of reference there. I have had that occasional meal that you know is a major carb overload and I feel lazy and sluggish.  I am guessing a person with diabetes feels that way and worse.  When it gets really bad, my son is constantly in the washroom, guzzling water and fighting the need to throw up.

I appreciate that the extreme end of vomiting when high is not a norm, but I am sure that some of that stuff like the drowsiness or the thirst is relatively common as his numbers climb.  That has to be annoying.

Just in case it isn’t enough to have to monitor your food intake without respite, and just in case it isn’t torture enough to be jabbed and stabbed multiple times per day, factor in the physical response.  Factor in the response  of your body to your errors in providing the exact right amount of insulin for all situations.  Consider how you would feel if your blood glucose level suddenly plummeted as you were in the middle of something important.  Consider the feeling of a sudden spike because you are facing an anxious situation. This the rollercoaster that you ride every minute of every day when you live with diabetes.

No wonder people burn out.  No wonder our children want us to take it away.  No matter what we do as parents; no matter how empathetic we are, most of us don’t live with diabetes on a daily basis.  We can’t begin to truly fathom how it physically feels.  No wonder many would just as soon forget.  After two minutes of thinking about what life must really be like for my son, I couldn’t handle it.  No one should have to handle it.

I am grateful for the discovery of insulin that allows people with diabetes to live, but insulin is not a cure.  They need a cure. safe_image.php

First Human in Type 1 diabetes Clinical Trial

If you have lived in the world of diabetes for any length of time, you have heard a million stories about diabetes being cured in mice.  We have read about encapsulate cells and stories of islet cell transplants. Most recently we have been listening to the stories of bionic and artificial pancreases. 

This summer I was asked if I would be interested in hearing from a woman who was involved in a human clinical trial aimed at preserving beta cell function.  A person who was involved in working towards a real organic cure? I was very interested.  This is Mary’s story….

I was seated in a conference room at the American Diabetes Association Scientific Meeting in San Francisco watching a presentation of type 1 diabetes (T1D) clinical study. Projected on the screen was a chart with dots and trend lines representing the functioning of each participant’s insulin-producing beta cells over the span of two years. As I squinted to see the detail, it suddenly struck me: one of those dots was me. I was one of those “participants.” In fact, I was Patient Number 1 in the study.
Rewind to March 2011. I had just been diagnosed with T1D at the age of 35. It was a shock for me, as it is for most people, to be diagnosed with a serious chronic illness especially after thankfully not having any medical issues up to that point. After absorbing the shock and starting to understand all the ways my life was about to change, I did what any 30-something living in San Francisco would do…I turned to Google.
Online I found a tremendous amount of information about the disease. “Knowledge is power” tends to be my mantra. But all the knowledge I gained through my searches seemed to lead to more questions, and I found myself looking for answers to what felt like the most pressing question – now that my immune system is attacking my pancreas, how do I make it stop? Nothing I was reading could answer this question. So, I shifted my focus to what researchers are currently trying to learn about T1D. I found a host of studies on sites like clincialtrials.gov and trialnet.org, and many of these studies were in fact seeking to answer the question that was most important to me – how do we stop the autoimmune attack on the insulin producing cells?
One of the studies that interested me the most was taking place right in my backyard. Researchers at the University of California at San Francisco (UCSF) were studying ways to use a patient’s own regulatory T cells (Tregs) to change the activity of the immune system. The study was so new that it had just wrapped up testing in mice. It was just now ready for a Phase I clinical trial in humans, and they were looking for participants! Without much hesitation, I dialed the study phone number. It turned out the study was even newer than I realized; in fact they hadn’t yet enrolled any participants – which explains why they seemed so happy to hear from me! And with this phone call my adventure as a research participant began.
It started with a basic phone screen with the study coordinator, and once it was determined that I met the basic criteria, I met the researchers to learn more about the study. The researchers drew diagrams on the board, talked about the theories behind the Treg study, and expressed a lot of enthusiasm for what they hoped to learn from this Phase I trial. There was also a lot of discussion around the practical elements of the study: the time commitment, the potential side effects, the upcoming process and the details of the procedures. I made the decision to enroll in the study. I was a bit nervous, but onboard.
Once I was enrolled, the real fun began; notably, the many, many blood draws. I found myself thinking, “Seriously – are you going to fill all of those tubes again?” The mixed meal tolerance tests (MMTs), which required me to drink a meal supplement while my blood was drawn every 30 minutes, were the most draining (pun intended) and lasted for up to four hours! And the worst part, the MMTs started first thing in the morning and required fasting, which meant no coffee! I must have complained about the lack of coffee a lot, because the nurses eventually started presenting my meal supplement in a Starbucks-like coffee cup in an effort to make me feel better – or to stop my complaining!
In between these draws, I was told to go home and ‘stay healthy’ (and take iron supplements!). That meant eating right, exercising, managing the stress of work and the stress that comes with adjusting to a new high maintenance chronic illness. Life went on and didn’t slow down for diabetes.
After a few weeks I was scheduled for what turned out to the biggest blood draw yet – enough to extract the Treg cells that would be expanded in the lab and infused 14 days later. It felt like a long 14 days, and the waiting was in some ways the hardest part. It was the anticipation of what was going to happen on the infusion day and wondering if this was really going to work and what might happen if it didn’t.
The day of the infusion arrived. The transportation of the Treg cells across town from the lab to the hospital was a highly choreographed affair, with the timing of the transfer scheduled down to the minute. Since this was the first time this was being done, there was a lot of anticipation on everyone’s part, and my cells arrived with an entourage! Soon there were eight people in my room, all members of the research team there to watch the infusion happen. While the nurses prepped me, we waited for the exact moment when the infusion was scheduled to happen. In my nervousness, I looked at everyone and said, “I still have the right to withdraw, right?” Let’s just say that my audience didn’t find that very funny. After the infusion, my vital signs were monitored every 30 minutes and overnight every hour, looking out for any potential side effects. But other than a metallic taste in my mouth thanks to the saline drip, nothing happened. “Is that it?” And I went home.
Guess what? MORE blood draws after the infusion. They started right away, multiple times a week for the first month, then (mercifully) every few months for the next two years. And in all this time, I didn’t really know how it was going, at least not officially. What I did know is that my “honeymoon” phase seemed to be continuing. My insulin needs were still quite low because my body seemed to be producing a fair amount of its own insulin. During this time I was also learning more and more about how to control my diabetes, and as part of the study I had ongoing access to diabetes educators who reviewed my paper and electronic logs (I started wearing an insulin pump and using a continuous glucose monitor) every two weeks. That might sound a bit much, but actually it was like having my own personal diabetes coach and it ended up really helping me manage my diabetes as well as possible.
Friends and family have often asked me what it was like to participate in a trial. I usually keep it short and say something like, “Oh, it was interesting.” Actually, it’s more than just interesting. It feels like a good thing to do. It feels empowering, and it also feels necessary. Science simply can’t advance without participants. Through this process I’ve become very appreciative all of the people behind the science – others with T1D who have stepped up and participated in research before me and the researchers themselves who have the vision, patience and tenacity to develop an idea and see it all the way through to fruition. So the next time you are reading the latest issue of Diatribe summarizing findings from the latest studies, take a minute to think of all of the people behind the data. They are average, everyday people – real people – helping to make day-to-day life with diabetes easier and bringing us one step closer to finding a cure.

Mary

Bionic Pancreas Moves Forward

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).

 

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

Four Hours, Just Four Hours

Diabetes Blog WeekYesterday we opened up about how diabetes can bring us down. Today let’s share what gets us through a hard day.  Or more specifically, a hard diabetes day.  Is there something positive you tell yourself?  Are there mantras that you fall back on to get you through?  Is there something specific you do when your mood needs a boost?  Maybe we’ve done that and we can help others do it too? (Thanks to Meri of Our Diabetic Life for suggesting this topic.)

Is there a mantra that I fall back on to get me through a hard diabetes day? Absolutely! It is one that I share with newly diagnosed adults and parents who are struggling to get through. I remind them to look at life in four-hour blocks. If you take everything in four-hour strides and you can ride through anything.

When diabetes seems to be kicking your butt every morning, look at how things are going between lunch and supper. Are things okay? Give yourself a mental high-five and celebrate that victory rather than dwelling on the post-breakfast spike that this threatening to drive you over the edge.

Do overnights seem overwhelming? Again, break it down.  How are things from snack until 12 or 1am? What is life like in the deepest part of the night? Are things settled before breakfast or has chaos been awakened in those four hours? If you break it down into six four-hour periods, life becomes a bit more manageable and instead of seeing all of the bad, you can savor some of the good.

Why do I have a four-hour mantra? Because early on I learned that my son’s Humalog was supposed to last about 4 hours.  He was injected at 8am for breakfast, then at noon for lunch, around 5pm for supper and then again at 9pm for his nighttime snack.  I was going crazy trying to see a perfect 24 hour day. I realized that looking at a complete day was never going to make me happy. The only way to see success was to look at small chunks of time.  Coincidentally, that was also how we would make changes to his regimen.  Was his breakfast ratio of carbs to insulin off? How about at bedtime? Life was naturally being broken down into 4 hour chunks for me so why not work with that?

Now I know some of you will say, but we are using a pump so that won’t work for me.  Yes it will!  Chances are high that you are still doing things like having breakfast, lunch and supper.  You are probably still going to bed at one point as well. All of these events can be broken down and again my four-hour mantra applied.  Was I a successful pancreas this afternoon? Yes? AWESOME!! Let’s break out the happy dance!!! Did I have an issue after supper? Okay, let’s look at what can be done.

Life is less overwhelming in four-hour shots. It can be applied it outside of diabetes as well.  Are you wanting to change your eating habits? Did you have a great breakfast? Pat yourself on the back. Over did it at lunch? Do better tomorrow. Can you see how easily this works?

Life can be overwhelming.  As we discussed yesterday, life with diabetes can make it worse.  Taking life four hours at a time has allowed me to focus on what I need to change and to praise myself when I get it right…and we all need a lot more praise in our lives.

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A Salute to the D-Warriors

d childBack to it. Back to that new normal life…where diabetes isn’t in it 24/7. It is still strange but this past week with my son was also a bit of an awakening. One in which perhaps more people should be exposed to.

My son was diagnosed with Type 1 diabetes over 14 years ago. He lived with me the bulk of that time. In September he chose to move to finish high school with his lifelong friends. It killed me inside but it was a choice that he had to make.

In the past six months, I have not had to get up in the middle of the night to test bg levels, but I still wake up. I haven’t had to worry about site changes but I still am in charge of ordering supplies. My role has changed. It is still taking some getting used to.

I was thrown back into the fray last week. Diabetes came back into my life in a huge way. It gave me a new respect for my son and for all people with diabetes. It brought a new pain to my heart. I wished that others could have seen what I saw and experienced what my son experienced. Perhaps if more people did, then more doctors would fully get it. Perhaps if more people did then more politicians and insurance companies would understand. Perhaps then more research projects would be funded and there would be a greater understanding and drive for a cure.

My son arrived on a Monday after a 10 hour day of driving. He was high. I asked him what was up. He explained. “I should have set an increased basal rate to cover all of that inactivity driving in the truck. I ate at a fast food restaurant but the meal I chose wasn’t too high in fat. I may also need a site change.”

I looked up the meal that he had eaten. It was a lot higher in fat than he had thought. We discussed extending boluses to cover those high fat meals. We talked formulas and I hoped that he might remember the concept the next time he ate out.

Because of those small oversights, he was high for the rest of the evening. He went through gallons of water and found it hard to socialize when he was spending so much time in the washroom.

His visit continued this way. There were highs. There were logical reasons for them. There were mistakes made. He is only human. Together we worked to fix them. There were injections and new sites. Sites fell out and got kinked. There were replacement sites and more injections to cover the missed insulin and bring him down. There was more water. He spent more time in the washroom.

I was exhausted. He took it all in stride. We discussed strategies. I suggested changing sites a little sooner when he was having highs. He told me that when he got too high he felt a burning in his legs and after a bit he would smell a strange smell. He said it was like his brain was frying because he was so high and he would smell it happening. My heart broke.

After days of “stuff happening”…a bad site, a poor carbohydrate calculation, a bolus delivered wrong, we finally saw him in range for longer than an hour. He was able to sleep through the night without a trip to the washroom every half an hour. He was able to put down the water bottle and enjoy a casual glass of diet Dr. Pepper. The battle was over and he had won. The war would continue another day however.

As he got on the plane for his trip home, my hands-on role ended. I was no longer in the trenches with him until he had another break and came to visit. That was not the case for him. His battle would continue on the plane where I learned after he landed, that the air pressure of the plane would impact the insulin delivery on his pump. Once again, after the fact we would know the reason behind a high or low but were at that point powerless to stop it. We hadn’t known.

How stressful must this be for a person living with diabetes? My son told me how his doctor lectured him when he goes to his appointments (although I am guessing that the bulk of his lectures are just). He stated that he the CDE he was sent to was more concerned with reading him documents than teaching him something useful. He is just beginning his journey of learning to be his own advocate.

As much as I complain about his lack of self care. Each time we talk, I am amazed at how much he does know about his own care. Some of the information he has heard from my lecturing and teaching, as well as the things he has learned at CWD conferences has sunk in. He is a teen and may not always do what he is supposed to but he does have the knowledge when he chooses to apply.

It will be up to him to apply the knowledge. It will be up to him to show his medical team that he is very educated in his care. It will be up to him to decide to take care of his body. It is a huge challenge. As people who do not have diabetes, it can be easy for us to judge and demand better. It only makes sense to take care of you. You will feel better. It’s not always that easy. Stuff happens.

This week was exhausting and I didn’t have the physical toll that he did. I was the coach on the sidelines, offering help when I could. I made suggestions, I took over care, I carried a small amount of the burden but he carried the bulk of the weight.

I could see him sitting in a meeting with his diabetes team and having them see this past week’s readings. There would be questions. Would he feel defensive? I would have. Would he feel judged? I would have. Did he do his best? Yes. Do the numbers look like it? No…and yes. Readings were high, but then we had a victory and things came down…before the next stumble and up they went. Should we have known better? Yes…and no. Yes, he knows to increase his basal when traveling but no he didn’t know the carb counts for some of the restaurant foods. Even with calorie counting software, errors were made. How could we have known that the site that went into his leg would bend—twice? There are so many factors going into managing diabetes. Even for those of us who have lived beside someone for 14 years, we can’t fully understand.

As a parent it is torture. I want to fix this. I want to take it from him. He doesn’t ask me to. He knows that I will do my best. When he stumbles or appears not to take care of himself the way that I would like to see, I get upset and even angry. I understand the toll that it can take on his body. I know the toll that a causal attitude will take on him long term. I know that he has the knowledge and I pray he will chose to use it sooner rather than later. I don’t always remember the struggle to balance being a teen boy and being a person with diabetes however. It has to be hard.

I won’t quit demanding the best from him. I won’t be able to stop being disappointed when I don’t see adequate testing. I will take this week and use it as I go forward however. It has been a great lesson to share when advocating for better care for people with diabetes. It has given me a new respect for all that my son deals with when Mom isn’t there to carry some of the burden. It has reminded me of how much diabetes sucks and how despite the fact that a lot has changed in 14 years, we still have a long way to go.