Tag Archives: diabetes awareness

What’s in a Word? Day 3 of Diabetes Blog Week

words-robin-sharma-quote

“The pen is mightier than the sword.”

“The tongue can pierce a heart. ”

“Words can inspire and words can destroy. Choose yours well.”

We have all heard the sayings.  We have also all felt the sting of words.  Words are very powerful.  They have a huge impact on our lives.

Today’s prompt for Day three of Diabetes Blog week, asks us to discuss the power of words.  How do we feel about the word “diabetic” for example?

I always refer to my son has  a person with diabetes.  “Diabetic” is not a word I have ever used around him or anyone that I know living with the disease.  Despite that fact, he will occasionally call himself a diabetic.  Does this mean that he seems himself as the disease? No but this condition has been with him for as long as he can remember.  It is as much a  part of him as his pump, meter and lancing device are.  They keep him alive.  He has a bum pancreas.  He understands that his daily routine is different from others. He doesn’t see it as a major obstacle.  Diabetes, diabetic, person with diabetes….they all just seem to be terms to him–terms that really don’t change much.

Some people are offended by the use of the word “diabetes”.  It is a word that is thrown around by the media and accompanied with a great deal of blame.  Diabetes happens to fat people who don’t care about their health. Diabetes is what happens when you feed your child a diet of chocolate bars from birth to age 12 non-stop.

Can you see the insanity? To me, the solution is not a name change.  The name has been changed–we once had juvenile and late-onset diabetes, and now we have Type 1 and Type 2 diabetes.  Another name change personally will change nothing.  The attitude and awareness must change.

No one should be blamed for their illness.  Education must continue.  We should unite in that effort not add to the shaming.  Cartoons that suggest that if Jimmy had twelve cupcakes and ate ten that he would have diabetes are just wrong.  I don’t care that it doesn’t say he will have Type 2 diabetes…it shouldn’t say diabetes period. It is not funny. It is simply cruel and that is wrong.

There are words used in diabetes care that  matter deeply to me.  The words “test your blood sugar” for example.  Those are words  that I have worked to be exceptionally careful with.

“Test” is a word with strong connotations in our society.  It suggests a black and white outcome–pass or fail, success or failure.  Blood glucose readings are often high or low and sometimes even “in range”.  To call the task to get those readings a “test” suggests that the number will show your worth–how good of a pancreas you were.

Yesterday we discussed the mental drain of diabetes.  For me, equating a reading with passing or failing adds to that burden.  It was very important to me, especially remembering that my son has been hearing readings since he was two years old, that numbers be just that…numbers.

I tried to stress that readings were tools.  They were a reference point to move forward from.  A reading that was too high was not a fail, it meant that he needed more insulin and next time we may need to factor in something else when dosing.  A reading that was too low as again something to learn from.  Of course a reading that was perfect was reason to dance, celebrate and pat ourselves on the back for being just plain awesome.

Words are powerful.  They can make you feel strong and invincible.  They can cut you to the core and make you feel worthless.  In life, I try to choose my words carefully. I make mistakes. We all do. I am not hypersensitive to the words that others use. I take my cues from my child and continue to make sure that he is not defined by the word “diabetes” but accepting of a life with this unwanted passenger.

Know the signs…Lives are at stake

The other morning as I scrolled through my social media newsfeed I read…

“My 14 year old brother died of kidney failure after living his life with diabetes.We are looking for help to pay for his headstone.”

“Teenaged boy dies from undiagnosed diabetes”

I saw blue candles.  I didn’t read any more.  My heart cracked a little more.

Sadly, these stories are not new.  I have been hearing and reading them for almost 16 years.

Did I hear them before March of 2000? No.

Why? Well, one reason is most likely the lack of social media in my life at that time.  I was not able to turn on my computer and read about it.  I didn’t have the technology.

The other reason is I didn’t pay attention. I didn’t know.

Before March 17, 2000 I knew next to nothing about diabetes.  I knew a lady who had it.  She took a needle or two.  She drank diet pop and people said that she didn’t take very good care of herself.

There was a young boy with diabetes that my mom knew when I was growing up.  He didn’t do anything different but some days he just sat on the couch rather than playing with the rest of us kids.

That was the extent of my diabetes knowledge.

I didn’t know that without insulin injections that woman would die.  I didn’t know that she had to balance her insulin, food and diet or she could pass out…or die. I didn’t know that the little boy was probably low and his body was recovering from a lack of sugar and too much insulin. I didn’t know that this was a very serious disease with very deadly repercussions if ignored.

Since 2000, I have changed…a lot.  The world has changed…a lot. Sadly, children and young adults are still dying because no one recognized the symptoms of diabetes.

The symptoms are still tricky.  I thought my toddler was teething or had the flu when in fact he was dying before my eye.  It doesn’t matter that the symptoms could be a mirade of other ailments.  We have to put the possibility of a diabetes diagnosis on the radar of doctors and the general public.

They have to run through the gamut of cold? Flu? Diabetes? A simple urine or blood test will rule out diabetes.  That is not being paranoid or over-protective.  That is the only way that we can begin to save more lives.

Know the signs
Know the signs

You always get the neatest things!

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I recently received my “Peace Love Insulin”  window clings.  I was so excited to receive them that I actually opened them in the car on my way home.  As I sat there, I wondered if I could put them on my car window right then.  The instructions said that I need a clean window, so I figured that I should wait until I was home and had a chance to make sure the surface was perfect.

When I got home, I immediately took a picture of my clings and shared them on Facebook and Instagram.  I wanted my friends who had created and mailed them to me to know that I had received them…Okay they were actually just too cute not to share!

After posting the image, another friend quickly commented, “you always get the neatest things!”  I realized that it is so true! I am blessed to have met so many incredible people on this journey with diabetes.  I have made connections all over the world. These fabulous people have shared things with us over the years and brightened my day with the smallest of gestures. That remains the most special part of this crazy life.

I have shared away of the diabetes shoelaces but if you would like to get “Peace Love Insulin” window clings, I can still set you up!!

Contact my incredibly talented friends over at the Diabetes Scholars Foundation. They have an Etsy page set up to take your order and send you out your very own clings.  You can stick them on your car, on your computer, wherever your heart desires!  Your money will go towards the incredible work done by the Diabetes Scholars and you will be the coolest person in town!

#PeaceLoveInsulin
#PeaceLoveInsulin

 

Lace up For Diabetes

#LaceUp4Diabetes  Have you heard of it?  I admit that I hadn’t.  What I had heard of was a friend on Facebook who was giving away these adorable shoe laces.

I commented on how cute they were.  He offered to send me a pair. Unfortunately because we were living in two separate countries, the hassle of mailing them was a bit much.  He did however pass along to his contact that I was interested in the laces.  This was the result…

#LaceUp4Diabetes
#LaceUp4Diabetes

Thirty pairs of shoes laces with the World Diabetes Circle on them!

It was a wonderful surprise.  I had only expected one pair.

These cute novelty items are the work of Novo Nordisk in an effort to offer support for those living with and at risk for, diabetes.  They write “Because if we all take these steps together, we can change diabetes.”  So very true!  Whether we work together towards a cure, to offer support, or to change legislation, one voice united is so much stronger.

Not so funny after all

The other day I shared a cute video parody on Facebook done by a young lady who has Type 1 diabetes.  She was singing about being low…and then overtreating and being high.  It was all done in fun. It was cute.  I shared it.

parody jealous

The thing was that while I watched it, I didn’t really think it was funny.  I actually wanted to cry.  My heart broke for her. I didn’t want her to have to feel low. I didn’t want her to have to feel frustrated that she over bolused for that last snack.  I didn’t want her to have to feel happy because she could show people that she could have a chocolate bar if she wanted.  I just wanted her to once again experience life without diabetes.

Perhaps it struck me more because they are all things that I don’t have to worry about.  I can nibble on the chocolate cake that is leftover from the weekend’s birthday celebrations without matching it with insulin. I can sneak a piece of chocolate from the cupboard just because I am having a craving. The only one who will give me a look will be my inner self  telling me that those spare 10 pounds will never go away at that rate!

My son manages his own diabetes care now.  He even makes his own changes.  In a recent conversation, I asked him how his readings were.  He said that he had been having an issue in the mornings but he tweaked his rates and all was fine now. He tweaked his rates on his own. No help from me. No help from an educator. He was steering this disease his way.  It was wonderful and sad.

Like this young woman in the video, he does it all.  There is no respite.  There is no end.  I get to sleep at night now because he isn’t under my roof to check.  Diabetes is always with my son, this young girl and the millions of others who have been diagnosed.   No matter how much I have worked to make life better for them, they still carry the burden. For whatever reason, that hit me hard the other day.  It still does.

I am ready for a cure.

 

 

A Rollercoaster Weekend of Emotions

Last week, Children with Diabetes hosted Friends for Life 2015 in Orlando Florida.  This is the most amazing diabetes conference for families on earth.

It is an experience that can evoke a sea of emotions.  Those who get to experience a Friends for Life Conference will feel the love and support immediately.  They watch name tags and put real bodies to Facebook profile pictures and Twitter handles.  They will take part in sessions that allow them to share their feelings, learn new techniques and hear about amazing new developments.

Sarah Loebner summed the conference up perfectly when she sang her song “Do you want to be my FFL?” (Check it out here… https://youtu.be/yh1m997pWhw )

Those of us unable to attend the conference ourselves, enjoyed viewing pictures and reading posts about what was going on in Florida.  You could feel the love spilling over the internet.

On Saturday July 11th, the feelings of happiness were pushed away as a sadness enveloped the diabetes community.  Many people had been following the story of Kycie, a young girl who was misdiagnosed with the flu when in fact she had Type 1 diabetes.  She slipped into a coma and experienced very serious brain damage because of this oversight.  Her story and her progress had been shared by many people in the diabetes online community but on the 11t11738031_10153498655789451_1000286532184841248_nh, her parents posted that she had died in her father’s arms.

The news saddened everyone.  The need for doctors and parents to be aware of the fact that type 1 diabetes can present itself at any age was posted on every other Facebook page.  People were reminded that a small drop of urine can save lives.

As this outpouring of grief and information was filling the internet, a new story was being shared.  A young boy named David was fighting the same battle as little Kycie!! Once again a Type 1 diabetes diagnosis had been missed and a child was fighting for his life.  Tragically, he too would pass away on Sunday July 12.

The grief is tangible.  The pain is real.

Friends for Life shows us how amazing life can be despite a diagnosis of diabetes.  They provide real examples of people who are living life fully for years with Type 1 diabetes.  They showcase the latest in technology and advances.  Despite all of this, if a child or adult is not diagnosed with type 1 diabetes in a timely fashion, the results can be deadly.  This weekend has proven this once again.

My own son was misdiagnosed when he was just 2 years old.  When the proper tests were run, he was given just 24 hours to turn around.  That was 15 years ago.  It terrifies me that with all of the advances we have seen in diabetes technologies that other families are still experiencing the pain that we did…and a lot worse.

RIP David and Kycie. 11750729_10207446600706801_4876256436333725936_n

Dear John and Jane Public

Dear John and Jane Public,

I understand that you probably know very little about diabetes.  Before March 17, 2000 I was just as ignorant.  Not knowing is okay. There are many things that I don’t know about but I am always willing to learn.  I wish that more of you were as well.

If you open your mind and learn, I am hoping that you will also begin to have more empathy and feel less inclined to point blame at the victims.  For some reason, a lot of the general public thinks that it is okay to blame people with diabetes for their condition.  it doesn’t matter if they are 2 or 92, many people feel that if they have diabetes they must have done something to make it happen.

In making that assumption you are hurting people like me, my child and many others who did nothing more than be born with genes that led their bodies to attack themselves.

You would think that after 15 years I would have a tough skin–I do.  I am used to well meaning people passing judgments on food that my child can or cannot eat.  I am used to people telling me that they understand my worries because their grandmother developed diabetes last year at  age 75.  I am used to people saying that my child must have it really bad because he uses an insulin pump.

I have learned to calmly tell those kind health care providers who ask if he will outgrow it that, no, he can’t grow himself a new lung and he won’t grow a functioning pancreas any time soon but thanks for asking!  I have learned to smile when I watch a TV show that suggests that they can track a missing person through the GPS on their insulin pump.  These are silly things that just get filed under “Things you deal with when you live with diabetes”.

John. Jane.  I do have to ask you one thing though.  You see, my skin has thickened. I know that I did not cause my son’s diabetes. He never had chocolate bars or was force fed jube jubes as a tot.  He had breast milk and few processed foods but that was not enough to protect him from developing diabetes.  His body still failed him.  It attacked himself leaving him terribly sick and almost killing him.

My genes may have played a role in this attack.  I have no family history of Type 1 diabetes and very little of Type 2 but I will accept that somewhere in my genetic makeup, there may have been some code that when passed onto his tiny body, created the havoc that led to his diagnosis.

I will accept that my ignorance of illnesses like diabetes and my faith in the medical community delayed my son getting treatment much later than he should have.  I believed the ER doctor who examined him and told me that he just had the flu.  That misdiagnosis almost cost my son his life but I will take the blame for listening to him even for a short while.

As you can see, I don’t need you to add to my guilt with nonsense. There are enough real contributors to keep me feeling horrible but they don’t.  Keeping my son alive and healthy for the past 15 years have been a greater priority.  It has been more important to learn about his disease, get him the best medical treatment, and teach him how to take care of himself than wallow in guilt and blame.

So John and Jane, what I am asking from you is for a bit more understanding.  You don’t have to know what my life has been like. You don’t have to know what my son deals with every minute of every day.  If you would like to learn more, please ask me and I will give you as much information as you want.  What you do can for me however, is to think before you speak.  You can think before you laugh at jokes about people getting diabetes.  You can think before you spread false information.

Please do not use scare tactics and tell your children that if they have one more candy out of the dish that they will get diabetes.  This is no more likely than your eight year old dropping dead of a heart attack because they had one more french fry.  You are right to teach your child the importance of healthy eating.  You are right to tell them how important eating balanced meals and staying active are but don’t make them think that the child in their classroom is responsible for her diabetes because she ate too much candy.  It isn’t fair to your child who may not want to be friends with someone who has such poor willpower,and it is not fair to that student who has enough going on in her body to deal with and could really use the support of friends.

Please Mr. and Mrs. Public, do not tell your friends about people getting diabetes because they are fat, lazy or because their parents didn’t care enough to stop them from eating junk. You may be sitting in a room with a parent whose child has diabetes.  That parent has struggled to make sure that their son or daughter has led a “normal” life while dealing with 3am low blood glucose levels that could kill their child.  That parent may have spent the past week worried about how their son would handle the pressures of graduation ceremonies and after parties while managing their diabetes care on their own.

John and Jane Public, I know that you cannot begin to understand what my life has been like for the past 15 years.  I know that you have no idea as to what my son deals with each day.  I don’t know what its like to deal with  a child with asthma or crohn’s disease but I would never blame the child or the parents for the disease.  I would listen and learn.  I would empathize and offer the little support that I could.

I don’t expect you to learn about diabetes.  I am not asking you to.  I will ignore most of your ignorant comments but if you let me, I will try to educate you a bit as well.  I know too much about diabetes.  I have spent the last 15 years immersed  in its world.  Don’t feel bad for me. I have met some amazing people and I have learned a lot.  My son doesn’t need your pity either. He is quite happy just leading his life but when you see his pump or watch him lance his finger remember…

Yes it hurts but it keeps him alive.

Yes, you could do it if you had to and hopefully you will never have to.

Yes, you should stay away from that junk food and exercise more.  It may or may not stop you from developing diabetes but either way, you will feel better.

Yes, he does have the bad kind of diabetes because there is no good kind.

Yes, its okay to be thankful that you don’t have to experience any of this….I really wish my family didn’t have to either but we do so please, think before you speak, and maybe, just maybe, take the time to learn about this disease that is impacting more and more families every day.

Sincerely;

A  tired mother of a young man with Type 1 diabetes.

Loving created by my dear friend Cheryl D

Loving created by my dear friend Cheryl D

 

I Wish People Knew that Diabetes…Day!

iwishpeopleknewthatdiabetes

Yesterday the talented Kelly Kunik asked people to tweet using the following prompt…#IWishPeopleKnewThatDiabetes  The response overwhelmed her and made many people feel less alone.  It was a fabulous initiative. I sent out a few of my own tweets as well.

Diabetes is a complex and complicated disease.  What did we want people to know? Many of us wanted people to understand that this is a very serious disease.  Yes, my son looks normal and for the most part he is normal–a lot unique but quite normal.  Very little stops him in life but everything he does comes with extra thought that others don’t have to consider.

He has to look at the nutritional value of food every single time he puts it in his mouth.  This doesn’t mean just reading labels when he is on a specific diet, this means every single day since he was 2 years old.  No matter what he eats, he must know exactly how much energy or carbohydrates are in the food so that he can match it to the amount of insulin he will require.  Too much insulin can put him in a coma or kill him, too little insulin can ultimately do the same thing.  He has to give his best guess on how that food will react in his body–how long will it last in his system? Is it a higher fat food or does it have a lot of protein or fiber? Will he be exercising right after he eats? Did he exercise a lot yesterday? Is he coming down with a cold or is he worried about an upcoming event? Everyone of those things and more will impact how his body metabolizes the piece of food he wants to eat and how much insulin he will require.

There is no respite.  He must make those decisions every time food touches his lips  After 15 years of diabetes education, he makes the process look easy.  A person looking at him rarely notices the insulin pump that he carries in his pocket.  Few people see him lance his finger.  It is rare for people around him to know how much it takes for him to keep himself alive and looking as healthy as he is.

When he visits me, he gets a small break.  I test him while he sleeps and make the corrections.  I will help with site changes and we will bounce ideas off of each other on how much insulin he requires.  He still carries the bulk of the load now however.

To stay healthy and complication free also requires a lot of money or great health care coverage.  My son has been lucky.  His father had coverage for his insulin and test strips.  When we decided to put him on an insulin pump, we received help on the cost of his first pump and later received generous support for pump supplies.  In recent years, our province has begun to cover both insulin pumps and his supplies.  This is a huge financial relief. As I showed back in February, diabetes is very expensive if you have no insurance coverage.

For people with diabetes, these things are well-known but for those who don’t have diabetes, it can be shocking and hard to comprehend.  Diabetes is part of my son’s life.  He didn’t ask for it. He didn’t do anything to cause it.  I breastfed him. I didn’t feed him sweets as a baby. His body, for currently unknown reasons, attacked itself and destroyed the insulin producing cells of his pancreas.

My son looks healthy. He takes part in almost all of the activities that others do with just a few more precautions.  He eats like a normal teenage boy but he carries a jug of insulin with him to do so. He finds humour in the best places.  He is a wonderful young many who happens to manage a life threatening disease on a daily basis.

#IWishPeopleKnewThatDiabetes has never stopped him but has taken a lot of work on both our parts.

#IWishPeopleKnewThatDiabetes has given us stress but also brought us the very best of friends.

#IWishPeopleKnewThatDiabetes is something that no one should have to deal with and I only wish that I could take it away from all of our children.

Thank you again Kelly Kunik for raising awareness in such a wonderful way!

 

If its not sexy, how to we make them care?

Its something that has really been plaguing me the last few days…how do we make people care? How do we help them to get it? Many people sympathize with all of the challenges that goes into dealing with diabetes.  Some people will look wide-eyed and dazed as they realize all that it entails but very few truly understand the serious and overwhelming nature of this disease.  In order to receive better funding for research or support with devices, its vital that common people understand but how do we do that? I hope you can help me with that.

My son was diagnosed with type 1 diabetes almost 15 years ago.  Before his diagnosis, I didn’t get it. I knew one child growing up who had the disease and knew one person as an adult who had type 1 diabetes.  She had to watch what she drank and could only use diet 7-up for her drinks.  That was the depth of my knowledge.  Today  I am a walking encyclopaedia.

We don’t need the general public to have as much knowledge as those of us living with diabetes.  We don’t need government officials who understand the ins and outs of the disease either but we need a greater empathy and understanding.

For years I have shared stories. I have given people the scariest moments to ponder. They have watched as my son ate meals at regimented times or devoured food with the voracity that only a teen can do followed by a large bolus of insulin. Despite that, I can hear in certain comments and see in various facial expressions that they still don’t really understand.

They think I worry too much…and maybe I do.  They don’t understand the costs associated with the disease–emotional or financial. They cannot begin to understand having to spend thousands of dollars each month just to stay alive–we have insurance that covers that right?  Obviously we have over dramatized things–they aren’t really that bad are they? Wrong.

Some people understand the freedom offered by a pump but fail to understand the importance of a sensor. The cost seems ridiculous when you can just lance your finger and have it done with. They don’t understand how important it is to “see” what is happening inside the body and to be able to anticipate and react to problems as they happen rather than later.

How do we make them understand? How do we make loved ones who don’t deal with this 24/7 truly comprehend what a person with diabetes goes through on a daily basis? How do we convey the stress and worry that they carry with then all of the time? How do we make an invisible disease visible and serious to those around us without the loss of limb or life? How do we remove the blame and create understanding?

These are real questions and I am looking for real answers. How do you handle these issue in your life? Please share them with me.  I would like to be able to use new and more effective techniques as I continue to advocate for my son and others living with diabetes. I would like to see the world come to a better, more real understanding of what people go through so that they can be more kind and more thoughtful to those living with diabetes.  That is my goal for 2015. Please help me to reach it. miss-idaho-insulin-pump-instagram-doodle__oPt

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