Hello…I’m a Glucometer

Diabetes Blog Week

Write a short story personifying a diabetes tool you use on a daily basis. A meter, syringe, pump, pill, etc. Give it a personality and a name and let it speak through you. What would it be happy about, upset about, mad about?  (Thank you Heather of Unexpected Blues for this topic.)

Hello, my name is Fred and I am a glucometer.  You would think with a job as important as mine that I would get a lot of respect but I don’t.  I am shoved in dark pockets, thrown around and basically taken for granted. Its a very rough life.

I am expected to be ready for service at all times of the day. It doesn’t matter if I worked hard all day, they still expect me to be bright-eyed and shining at three in the morning. And when I say shining, I mean that they really want me to light up all nice and bright showing them glowing pretty numbers. When they are done with me, they just toss me off to the side again.

My job is tireless.  They smear blood all over me.  They curse at me when they don’t like what the reading is.  Like that is my fault? How is it that I control what their blood glucose is going to be? I deserve a lot more respect.

The only time I get respect is when the parents or the doctor take a look at me.  They know how important I am.  They look at my display as if they are reading a holy gospel.  They value me and my knowledge.  My owner? Well, he looks at me like I am a rock, a burden that he is forced to carry around. I am the unwanted younger brother that he has to take everywhere.

Why does he have to think of me that way? It hurts my feelings. I am just trying to do my job. I am trying to work with him to keep him healthy.  I know that it can be tedious. It’s not picnic for me either. I mean, I have to be on all of the time! There is no time when I can be just a little less accurate. I have to bring my A-game every time we meet.  Its exhausting but I don’t get any praise or appreciation.

He just doesn’t get it and some times I get mad as well and when I do, I get even in my own way.  When he just grumpily and shoves a strip in me and expects me to instantly produce results, I come back and tell him “Error 4”.  Oh does that get his goat! He has to retest and take his time to treat me a little nicer–getting all of his blood just so on the test strip so that I will read it for him.  After he has done that, I reward him by saying “HI” but he doesn’t often see the humor in that one. I don’t understand why.  Isn’t it important to be friendly now and then? Perhaps if he could be a little nicer, we could work together a bit better and I wouldn’t have to resort to cheap jibes.

Maybe one day he will get it. One day he might understand how important I am! Oh well, at least he takes me most places. I usually only hear about the spots that we go to from the inside of a pocket but at least I get to tag along.  It’s not easy being me.  I guess it’s not easy being him either, but I still say, “work with me dude! It will make things so much easier!”  Darn! I shouldn’t have said that so loud, here comes another check. Back to work!

hi meter

The Blame Game

When a person is diagnosed with lung cancer do we blame them? Do we question their lifestyle and then make them feel ashamed? Do we minimize what has happened to them because they possibly brought in on themselves by not listening to the anti-smoking ads?

If a person is young and suffering from dementia do you blame them for drinking too much? Do we shun them because they should have dealt with their alcohol problem before it brought on a much larger issue?

We may shake our heads…and they might also.  We may wish that they had chosen a different lifestyle but we often also look at others who lived that exact same lifestyle and are fine.  We wonder why them?  We feel sad, but we do not blame the victim.

Why then does society feel that it is okay to blame people living with diabetes for their disease? As a parent of a child with diabetes, we are asked if we fed our children a lot of sugar.  It is suggested as mothers that we did not breastfeed our children long enough to ensure that they developed the proper antibodies to protect themselves from developing diabetes.  The list of non-sense reasons go on to the point that parents become frustrated and angry.  They try to distance themselves from people living with Type 2 diabetes which lives with its own stereotypes in hopes of making the blame go away.

People with Type 2 diabetes obviously caused their disease and are therefore to blame for everything. We know that it is a lifestyle disease that strikes people who are overweight, eat only fast food, and are terribly lazy.  It is all their own fault.  Because of their bad behaviors they are the causing  increased hospital costs, increased taxes to pay for those costs, and probably the reason that gas prices are so high!

Can you see the logic? You are right, there is none.  Diabetes seems to have a genetic component of some sort that is triggered by something. If we could figure out the hows and the whys, then we would have a cure and everyone would be quite happy.  Sadly, there is no cure. There is no definitive why.

As a parent of a child with diabetes, I know that I did not force feed my children large amounts of sugar.  My children were not given sweets when they were younger. They did not have a large amount of processed foods. They were breastfed for differing amounts of times and were both vaccinated on schedule.  Did I do something to cause my youngest son’s diabetes? I pray not but I have enough to deal with without delving into a myriad of “what ifs” on the subject.

My son lives with diabetes. He has for the past 14+ years. We have worked and continue to work to keep him as healthy as possible That takes a lot of time, effort and money to purchase the supplies and devices that are best for his care.  The financial cost of keeping him well is nothing compared to the return that the government will get by having a healthy, productive member of society contributing to their tax coffers for many years to come.

As person with Type 2 diabetes also faces many stereotypes.  They are overweight and therefore caused their disease.  They are out of shape and live off of fast food. Really? I know many overweight people who do not have diabetes. I have met athletes in great shape who have Type 2 diabetes.  Does body shape make either one of them any less important? Does their age mean that its their fault?

Do we blame a child for developing Type 1? No, they are innocent but we can blame their parents. They should have done more! Do we blame adults who find out that they are insulin dependent as well but it doesn’t happen until they are in their 20s?30s? or later? I mean they obviously screwed up somewhere as well right?

Are you starting to see the insanity? Why do we waste energy on blame? We do not blame the person with liver failure or dementia for their past lifestyle.  We do not suggest that the parents of a child with leukemia should have breastfed their little one for longer. Why then do we feel the need to blame people living with diabetes?

The answer is not changing a name. As Shakespeare says…”What is in a name? A rose by any other name smells just as sweet.”  Well diabetes–type 1 or type 2, is just as rotten a disease no matter what you call it. No matter what the name of the disease involving the improper use of or production of insulin is, it is still a disease that happened TO someone. It is not a reason to shun or demean someone.

I can think of no other disease that is so misunderstood to the point of creating real danger. A lack of understanding about the serious nature of this disease can result in people with diabetes not having access to the best medications or devices. It can mean that when diagnosed, people with diabetes do not always understand the serious nature of the disease.  It can result in frustration and anger in people living with diabetes when they try to educate the general public, educators and even medical staff about the realities of the disease–its costs and the toll it takes on everyone involved.

It is time to end the blame game.  Diabetes sucks.  That is a fact that we must focus on. It is a very serious disease that does not care what color you are, how old you are or how big your wallet or insurance coverage is.  It will enter your life and change it completely.  It will threaten to end your life. It will always hover on the sidelines waiting to wreak havoc on your day. It must be stopped but sadly we must first end the blame and so that we can all focus on the cure.

blame

Fourteen Years Since the World Exploded

14 years ago today my world turned upside down. It was not a fork in the road. It was not a minor blip on the radar of life. A bomb exploded and it forever changed the landscape of my life.

14 years ago this morning, I was looking at a sick little boy in my arms and was waiting to be able to take him in to see our doctor.  I was ignorant of what was to come.

14 years later, my son is a young man making his own decisions and stretching his wings…who just happens to live with Type 1 diabetes.  I am stumbling to come to terms with my new role of no longer being a hands on mom and often find myself looking back to see what I have done in hopes of figuring out where I will go next.

14 years have brought many changes.  Insulin pumps are more readily available and continuous glucose monitors are no longer things found in hospitals that are blinded for 7 days.  They are real tools that families and individuals are using in real-time to help fine tune their care.

14 years ago, diabetes threatened to take the life of my son.  Today he is strong, vibrant and learning how to handle his disease.  Diabetes does not control him. Its just his “thing” to live with.

We have not always seen smooth sailing. We have had our moments.  He has driven me crazy at times–failing to test or change infusion sets. He still can drive me nuts. I have yelled at him because of my own failings and frustrations.  We are not perfect but we are living. As the commercial says, we are living with diabetes. It stops him from little.

Diabetes has brought me the most incredible friendships.  I have friends throughout the world who have reached out at various times in my life to help me up or shove me forward. I hope I have done the same for them.

14 years seems like such a long time and yet I can see us back in that ICU just like it was yesterday.  Some things you never forget…my son has but I haven’t. Instead, on days like today,  I look back and say thank you! Thank you to the doctors and specialists that kept him alive and have taught us through the years.  Thank you to the Higher Power that has been with us through it all. Thank you to the friends and family who have joined us on this journey. Thank you for 14 years of good health and improved technology!

Diabetes sucks but life after diabetes…well its still life and that is pretty amazing!

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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

 

Blue Candles…once again

In July of 2011, I sat down and posted my thoughts on the blue candles.  Those of us in the Diabetes Online Community know them all too well. They are candles lit when a person with diabetes loses their fight with this disease.  

Last week I saw them appear twice.  A young boy around 11 years old and then another child just beginning their life as a young adult dead at age 18.  Heart breaking, painful and leaving us desperate for a cure, I also thought is was a good time to revisit that post.  The circumstances of my life have a changed a bit. My children and I are both older but the feelings remain the same…

Blue Candles–they are the candles that we light in cyberspace to remember someone with diabetes who has lost the fight. Each month, each week, we seem to see these images pop up across the online community.  As profile pictures are changed on Facebook stories emerge, fears grow and the desire for a cure is that much stronger.

Most recently the candles were lit for a bright, young fourteen year old girl. She was diagnosed when she was four years old.  She laid down for a nap and her father found her dead on her bed a few hours later.  The story sends chills down my spine.  She did not die at night. She passed away sometime during the afternoon.  We do not know many of the details.  We only know that she was far too young to die.

I don’t tell my son about these stories any more. He is almost the same age and has had diabetes for a few years more than she did. I don’t light candles on my Facebook profile.  I don’t write about half of the stories that I hear.  I can’t. I read about these children–whether they are fourteen or forty, they are still someone’s children.  My heart breaks for the parents and the families. I hug my boys a little closer. I pray a little harder. I hope for the very best.

I was reading a story one day of another child lost and of course had teared up a little. Someone told me that many children sadly die each day.  It could be a complication from cancer or an asthma attack but other diseases kill as well. It was suggested that I can’t focus on these deaths and be obsessed or paranoid. I reassured this person that I wasn’t. I read. I mourn. My heart aches for the families and I grieve for the life cut short before its time.

It is true that our children die crossing the street, riding in cars and playing in swimming pools.  As parents, we do our very best to protect them.  We teach them to look both ways before crossing the street. We put them in car seats and demand that they were seat belts.  We teach them water safety and we warn them about the dangers of drugs and alcohol.  All in all we do our very best to guide them and pray that they will be okay.

As parents of children with diabetes, we do all of that “normal” stuff and then we do a little more.  We work to help them to recognize highs and lows.  We test them as often as we can.  We keep tight control to prevent complications and fear going too far and having to wake to a child gone because of a low.  These fears are real. They do not keep me up all night but they do wake me up at 2am to test.  They do not stop me from letting my son be a child but it does make me check his pockets for glucose and his cell phone when he goes out.

As a parent, I cannot protect either of my children 24/7 for the rest of their lives. I wish I could. As much as I love watching them grow, think and spread their wings, part of me craves for the days past when I held them tight and could keep them safe in my arms.  They are growing. My oldest son is driving and almost out of school.  My youngest is well into his teen aged years and venturing off on his own more and more.  Diabetes or not, I can only pray I have done my best, continue to do as much as I can and leave the rest up to a higher power.

Last night was my son’s first night home after a few weeks away. I went to bed and woke a few hours later than I had planned to but he was low. The story behind one of the recently light blue candles played itself out in the back of my head. After 45 minutes and a lot of juice, his blood glucose levels were back in range and I could return to bed. I said a prayer of thanks that I woke up to test him. I prayed for families who were not so lucky.  I touched my son’s hair and wanted to hold him tight and kiss him gently on the forehead like I used to when he was small. He is now a teen. If I did anything beyond quietly touch his hair he would wake up creeped out and would claim nightmares for the rest of the night! Instead, I watched him sleep and I thanked God that he was alive, healthy and happy.

I will test my son at all hours. I will remind him to bolus.  I will deal with late night lows.  I will demand to know where he is going when he leaves the house. I will preach the evils of smoking, drug use and the dangers of too much alcohol.  That is my job and I need to know that when I close my eyes I have done that job to the best of my ability. This will never guarantee the 100% safety of either of my boys but its my very best and that is all a parent can ever do.

A Monumental Day

Today is World Diabetes Day.  This day commemorates the birthday of one of the men responsible for my youngest son being alive today–Sir Frederick Banting.  This amazing Canadian was involved in providing us with an inject-able source of insulin–the first step on the journey to cure Type 1 diabetes.

Today is also the first time that my son is going to a diabetes clinic without his mother. Because of where he currently lives, it is not possible for me to travel to attend with him. He is going with his dad.  I received a text while he was in the office looking for some information. I had already been in contact with his new CDE and provided his basal rates and carb to insulin ratios.  The rest of the appointment is/was up to him.

While my son attending his first ever clinic appointment is a big deal for me, an even bigger deal is who my son will see today–on Sir Banting’s birthday.  He will sit and chat with the man who kept him alive on that March day many years ago when he was first diagnosed with Type 1 diabetes.

My son is returning to his first pediatrician.  This is the man who told me that the next 24 hours were critical and would tell if my son lived or died.  This is also the man who held my hand and kicked my butt to learn and gain confidence in dealing with this beast we call Type 1 diabetes.

I have said time and time again how hard it is having my children living far away from me. I have moaned and groaned about the challenges of having a teen living away and the many worries that come with that.  The best thing about his move however is this return to his doctor.

His doctor knows my son’s potential. He knows me. He has watched my son grow.  He has always encouraged my son’s independence.  He has also never been shy of telling either of us what he thought.

Today is World Diabetes Day.  Today marks the birth of the man who discovered insulin. Today also marks a full circle in my son’s diabetes care.  He began seeing this doctor as a toddler protected by his mother.  Today he sees him again as a growing young man stretching to find his way in an adult world.

world diabetes day

The Diabetes Game Show

Its been over two months since I have had to wake up and test a bg level.  It has been three weeks since I last asked “Did you test before you started eating?”  My brain seems not to care.

It doesn’t seem to realize that I no longer have to think about diabetes 24/7.  It does not realized that diabetes has moved a bit further back in my life.  It no longer shows itself in every move I make.  It moved away with my son and while I still worry and am involved in many aspects of his diabetes care, I do not have to be constantly on alert.  My brain seems to forget that.

A few weeks ago, I was on holidays.  This meant being able to sleep in and stay out late. I enjoyed some great entertainment and new sights. Despite the new experiences, there was also an old habit that reared its head…dreams of diabetes! I was in Las Vegas, so I guess my mind felt it only fitting to have me dream of gaming.

In my dream, I was part of a game show. I was not exactly a contestant but I was being asked my answers before they would say if the contestant was right or wrong. The questions were all related to guessing what someone’s blood glucose levels were based on how they felt.  I had to say if they were high or low but not just “high” or “low” but provide an exact reading of where I felt they were.  As if that was not enough of a challenge, my mind knew that I was in the US and demanded that I convert all bg levels into mg/dl!  I could not give a 2mmol reading but had to say that I thought the person was 36.

I have no idea what anyone won. I don’t know how long the game went on or what the ultimate goal was but I continued to provide readings based on experience with my son. I thought, calculated and gave my impressions…until I woke up!

I have had (and still have) those panic dreams of forgetting to do a night test. I have (and still have) nightmares about A1c results.  Dreaming of being part of a diabetes game show was definitely a first for me however!

diabetes game

Diabetes Month Photo Awareness

Where did the time go?? Somehow its November again and World Diabetes Day is looming. In honor of Diabetes Awareness Month, someone brilliantly thought of creating a “Photo a Day Prompt” (#dmpad) to create awareness and put faces to this horrible disease.  I am enjoying viewing the pictures that friends are posting and will begin posting my own as of today…

Past…

Liam Feb 2000

 

 

Two years old

 

 

 

 

 

Check

Liam testing in NYC

 

Testing while walking the streets of New York City.

 

 

 

 

 

Snacks

New Brunswick3 124

 

While we make sure that my son always has some for of glucose with him at all times, thanks to his insulin pump, he no longer worries about what or when he eats.  Snack times are a thing of the past and he now eats whenever hunger strikes.  Dairy Queen cakes remain a favorite snack!

 

 

 

Proud

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Of the quirky, humorous, down-to-earth, young man he has become.

 

Thanksgiving Thank YOU!

Its Thanksgiving here in Canada already! I can’t believe it.  It seems like it was just Easter…or at least summer and now we are quickly moving into mid-fall.

This year there is no need to count carbs for dressing or worry about the impact of whip cream and pumpkin pie on bg levels.  Actually, this year there is not even a turkey.  In a blended family of five children, we had no one who would be available to eat with us so it’s a small chicken and dinner for two.  That is okay, we will make up for it another time I am sure.

We have been busy dealing with life, winterizing our cabin, winterizing the house, and many other details so Thanksgiving literally crept up on us without notice. Despite all of that, I still have many things to be thankful for today….

Amazing friends and family who continue to support me through the highs and lows of life.

Insulin that has kept my son alive for the past 13+ years.

The technology that continues to advance making our lives a little more flexible.

All of you who continue to read my ramblings, offer words of encouragement, and share yourselves with me.

Happy Thanksgiving everyone!happy-thanksgiving to you

 

Psychic Connection?

The other night was night two of tossing and turning which in itself is not entirely unusual. This night was different though.  I was completely tired and ready to drop.

I had read a few pages of my book, done some relaxation exercises but sleep would not come.  After awhile anxiety began to creep in. I tossed and turned some more.  My mind began to take off on its own. There was no way to reel it back in.

I thought of my oldest son living up in Alberta.  Had he been injured at work? I would have heard if he had. I tried to shut my mind down again. I tossed and turned some more.  I thought of my youngest son. Was he testing at night? Was he in trouble? Had something happened? I again worked to calm myself down. Both boys, or someone around them, would have contacted me if there was a problem.  I was being foolish.  I was overtired. I had too much on the go. I had too much time on my hands.  There were a million reasons for me to be tossing and turning. Driving myself insane was in no way helping the situation. By 2am I finally fell asleep.

When I got up the next morning, I wondered if this had just been a reaction to so many years of interrupted sleep.  Was my body going through some sort of withdrawal? It has not slept through the night for any extended period in 20 years.  There was bound to be some issues at some point. I decided that I would try herbal tea with my book the next night.  All would be fine. My kids were still alive. No friends or family had been injured during the night. Obviously my anxiety was unwarranted. It was probably just my body being strange….and then I talked to my youngest son.

After a bit of chatter, I asked him how his readings were.  “Good except for last night. I was up all night because of a bad site.  I got it fixed though and was perfect during the day.” BINGO! There was the source of my anxiety!  He was in trouble the night before.  Well not trouble, but you know what I mean.

I have spent almost 14 years somehow waking to most diabetes related events. I would wake at unexplained times when he was low or high.  Something would bring me out of a deep sleep and make me test him.  We have no CGM.  I just somehow often “knew“.  Perhaps this knowing did not know distance?  I am not sure. Some people would say that I was crazy and this was just a coincidence.  It could be. I am not sure but I do know that I slept a little easier the next night.  Any tossing and turning  I experienced that night didn’t have a higher level of anxiety attached.  As long as my son is also waking and dealing with things…well I will probably always worry and be concerned but hopefully I will find a level of calm. If I don’t, I will text! psychic