Tag Archives: life with diabetes

I don’t have diabetes but diabetes can still bring me down.

Diabetes is exhausting.  The emotional toll of test, calculate, bolus is incredible. I am lucky.  I don’t have diabetes, but diabetes can still bring me down.  Because I don’t have diabetes, when it does tend to be too much I can step away,  put it on the back burner and regroup before I dive  in again. I wish everyone with diabetes had it that easy.

For years I was my son’s external pancreas.  It was exhausting.  I never slept more than four hours at a time.  If I woke up during the night, I tested his blood glucose levels.  We had no CGMs.  We just had me. It was my job to make sure that he was in range.  I was the one to calculate carbs, adjust insulin ratios and log blood glucose readings.

My son tested and learned alongside of me but I carried the bulk of the burden…until he turned 16.  At 16, he decided that he could handle it all.  He carried the entire burden for the next three years unless he was visiting me.  When he was with me, I took over as much as he wanted.

Taking over wasn’t the same as doing it 24/7.  That being said, being an external pancreas also wasn’t the same as being the one to experience the highs, lows and pokes with needles multiple times per day.  Not being able to “fix it” or take it away could (can) bring me down as much as the pressure of daily diabetes care.

I  still wish that I could take the pain away. I wish that my son would know a different life.  There isn’t a day that I don’t ache for the families and other people living with diabetes knowing that they can never stop testing or injecting.  Their very lives depended on it.

As I  brush away those feelings, a new sadness often creeps in and diabetes can bring me down again.  The new sadness often comes from   my advocacy efforts.

Ever since my son’s diagnosis, I have worked very hard in various advocacy arenas.  I have worked with grassroots groups, individuals and large organizations to see changes for children and adults living with type 1 diabetes.  This means that I also am exposed to the worst in the diabetes world.  People come to me when they are struggling and don’t know where else to turn.

Don’t get me wrong, I love being that shoulder. I love being able to give back to them in the same way that others were there for me.  The problem for me arises when we can’t see a perfect resolution.  I ache when someone comes to me with a situation that I know there is just no current solution for. I want to fix it desperately but when I can’t?  Diabetes can bring me down.

At some points that sadness because I can’t fix it has been overwhelming.  Those are the times that I have had to step back a bit. I have had to reduce the time I spent on issues and allow myself to step back from the advocacy arena.  During these times, I remind myself that there are many others out there who can handle it just as well and I regroup.

I will admit, sometimes diabetes has brought me down so far that I wondered if I would come back.  Had my advocacy usefulness past? Was I too cynical? I can’t really answer that but I can say that I recharge and am pulled back into the ring by families and individuals who continue to reach out looking to me for help.

I don’t have diabetes.  Diabetes can still bring me down but it never keeps me down.  Each day I wake ready to work a little harder.  Each day I will share what has worked for us and hope to inspire and assist others living with diabetes.  I will continue to work with individuals and groups to create better care for people with diabetes regardless of education or income level.  Diabetes can bring me down but it will not win. My battle won’t end until a cure is found.

What would happen if people with diabetes weren’t constantly subjected to blame and criticism?

If you have cancer, you are usually met with sympathy and compassion.  A person diagnosed with heart disease is met with care and concern.  When people find out someone has diabetes, the first reaction tends to be blame.  What did the person with diabetes do to cause this condition? What have they done to have an A1c that high? Have you ever wondered what would happen if people with diabetes weren’t constantly subjected to blame and criticism?

choose compassion not blame
Choose compassion not blame

Think about this….a woman goes into her doctor’s office and is told that she has breast cancer. What does her doctor do after breaking this news to her? Can you picture how her friends and family will react? Most likely the doctor offers support and treatment options.  Her family will offer to assist her in any way that they can.  Everyone offers sympathy and hope.

Next imagine what happens when a man walks into his doctor’s office and  told that he has congestive heart failure.  What does his doctor do? How how does his family react? Again, treatment options and hope are given we can be sure.

Now consider what happens when diabetes is the diagnosis…. A family walks into a doctor’s office.  Their son hasn’t been himself lately.  He is lethargic.  He is drinking everything in the house and consequently is suddenly having accidents and can’t seem to hold his water.  They know that something is definitely off.

The doctor tells them that their son has Type 1 diabetes. She asks if there is a family history of diabetes? She gives them a brief rundown of what diabetes is.  The doctor provides a prescription for things like insulin, syringes, and blood glucose test strips.  No treatment options are discussed. The doctor then tells the family that they will have to go immediately to a place called “diabetes education” for a bit more training.

The stunned family is pushed out of the door and heads to the next office.  They are reeling.  They don’t understand what they have been told.  The poor family knew nothing about diabetes before this day.  It was something that came from eating too much sugar but they didn’t feed their son sugar…did they?

The family has been told that they will have to inject their child with a syringe multiple times per day.  The doctor has told them that if their son gets too much insulin, it is an emergency and he could pass out and die.  They have been told that he currently has too much sugar in his body and he needs more insulin or he may got into a coma and  die.

The doctor did asked them  if there was a family history of diabetes. Now they wonder again if they caused this.  Did they do something wrong? Did they pass on faulty genes to their baby?

This newly diagnosed family goes to diabetes education and learns all they need to know about diabetes in a few hours.  They are told about carbohydrates, insulin, exercise and many more terms that are floating around meaninglessly in their heads.  The family is overwhelmed and exhausted.

As the news of the young boy’s diagnosis reaches family and friends, well-meaning friends reach out and contact the family  Their aunt tells them that their great-uncle had diabetes…the bad kind….he died.  A neighbourhood child asks your son if diabetes is contagious because he is worried that he might “catch it” and then have to have needles too!

Can you see the difference in these three scenarios? In each incidence, the diagnosis is earth shattering.  The people involved in all three stories are forever changed but in the first two cases, they are met with compassion and care rather than being the butt of jokes.  When diagnosed with something other than diabetes, the individual does not seem to have to educate or correct misconceptions from family and friends.

Now imagine this…the same family meets with their doctor.  She tells them that their son has diabetes.  It is a serious life-threatening disease but working together, they will ensure that  he will live a long and healthy life.  She tells them about amazing treatment options and offers them numerous online resources.

A diabetes team comes in bring with them  another family who also has a child with diabetes.  This family will act as mentors for them.  The parents will be able to share their fears and experiences and the children will be able to also share with each other.  They will guide them to other supports.  The family knows that they are not alone. They know that they will make it through.

Further imagine this family going home after insulin guidelines are established but they don’t come home to judgement and fear. Instead this family walks in the door to find that their neighbours have prepared meals with carb counts so that Mom and Dad can focus on their family.  They see that Grandma has arrived to help out and learn diabetes care so that their son can still spend his summers with her.

The is way diabetes should be handled–with compassion and care.  It does happen.  There are some incredible diabetes teams out there.  There are amazing people who understand and don’t judge.

Wouldn’t it be wonderful if this was the rule not the exception? Can you imagine if there were no more diabetes jokes? No more comments about Great Aunt Sarah dying from the bad kind of diabetes?  What if parents no longer threatened their children with “if you eat one more of those candies you are going to get diabetes!”

That would be compassion in its purest form.  It would allow families and individuals to deal with this new way of life with much more support and love.

It can happen but it takes work.  We must continue to educate the general public.  Educators and doctors must continue to offer compassion and support.  It is important that those of us who live with diabetes  constantly remain available and understanding towards those who are just learning about life with diabetes. Together we will create more compassionate resources for those with diabetes until there is a cure.

What Parents of Children with Diabetes Wish You knew…

d parentsHave you read the blog post “What Everyone with Diabetes wishes you knew“? Go and read it if you haven’t. Bring tissues.  After I wiped away the tears, I began to think about “what parents of children with diabetes wish you knew.”  Some of us don’t have diabetes ourselves but we still have very strong feelings about the issue.  As parents of people with diabetes, we have things that we wish  our children knew.  There are also things that we wish that the general public knew.

Parents of children with diabetes wish that the our children with diabetes knew that….

We would take this disease from them in a heartbeat…a heartbeat.

With every tear that they shed,  we have privately cried  a hundred more… We didn’t want you to see how much it hurts us to hurt you.  We told you that we do this to keep you healthy and alive (and we do) but it kills us too.

No matter how old you are, we still want to “make it better”. Seriously.  Still.

We know that you can handle it.  We just wish that you didn’t have to…As parents of children with diabetes, when we were completely responsible for your care, we got tired and wanted a break. We understand that you, as the person with diabetes must feel the same way at times. We wish we could carry the burden for you.

Even when we don’t ask you how your readings are, we are still wondering if they are okay…We know that you are more than a number.  As parents of children with diabetes, we understand that blood glucose levels are only part of the story but we want you to be okay.  We want to know that the readings are okay as well.

We have watched you sleep and cried at all of the holes that we have put into your body just to keep you alive.

Every night that we sat awake waiting for your blood glucose to rise or fall, we did from love and a need to keep you safe.

When we nag at your for not testing, injecting or rotating sites it’s because we want you to have a long and healthy life.  It’s not that we love the sound of our own voices. It’s not that we think you don’t have a clue. As parents, we know  that life happens and people forget. We just want to help.

If you need us to, we will still help you with any care or night testing.  Ask.  We might be out of practice but we are quick studies. We will help you any way and any time that we can. It’s just what parents do.

Even if you aren’t my child and you live with diabetes, I wish I could take it from you.  Honestly,  I wish I could help you carry that burden for a week and let you breathe.  I have told you this before and I mean it. I don’t care how old you are.  You are someone’s child with diabetes.  You carry the same burden as my own child.  It still kills me.

I wish you didn’t have to carry so much “gear” with you when you go out.  I wish you knew the luxury of just grabbing your wallet and keys and heading out the door without concern for insulin, pump, glucometer and glucose tablets.

We wish for a cure too. Until it arrives, we will work with you to have the best care, the best knowledge and the best tools that we can afford.

As parents of people with diabetes, we wish that the general public really understood that…

Type 1  is not the same as type 2 diabetes.  Each disease has its own challenges and issues.

We did not cause our children to develop diabetes.  Seriously, we carry enough guilt about not protecting our children from an invisible disease.  Your added blame is not required.

It is okay for our children to have treats now and again, the same as your children do. No child–or adult should live on junk food but a cupcake now and again will just brighten someone’s day…or raise a falling blood glucose level.

Insulin is not a cure. It just keeps my son alive…and can kill him. It is a carefully managed tool that he use must use at all times.

An insulin pump is not a cure either.  A pump is an expensive tool that not everyone can afford.  Even for those lucky enough to be able to use one, there is still much work to be done to be safe and healthy.

Diabetes is expensive. Let me repeat this….diabetes is EXPENSIVE. There are many great advances in diabetes care but they are only available to those with excellent insurance or deep pockets.  The cost of diabetes supplies can range from the equivalent of a car payment or  mortgage payment each month. Again, that is just for a person with diabetes to stay alive.

I look tired because I don’t sleep at night.  After years of worrying about my son’s blood glucose levels and testing him numerous times per night–well I still wake up. I still worry about what his readings are. I still don’t sleep properly

Worrying isn’t about being an overprotective helicopter parent or because I have nothing better to do with my time.  I worry because diabetes is deadly.  Errors in insulin, errors in tools or simply changes in activity levels can have lethal consequences for people with diabetes.  This isn’t just talk. This is real.  I have lost friends to this disease.  Parents of children with diabetes  have seen their children die because of diabetes. Diabetes kills. It is a scary disease.

As a parent of a child with diabetes, I hope both my child and the general public know that I will continue to work hard every day to improve the lives of people with diabetes. I will offer a helping hand, a strong shoulder or the voice of experience where necessary. I will continue to dream of a day when we can say that we are parents of children cured of 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?

 

Diabetes Diagnosis day…It slipped my mind

Celebrating 17 years of health and wellness
Celebrating 17 years of health and wellness

It slipped my mind…sort of…well, more so than ever before. Today is the day that Diabetes turns 17 years old in our house.  Strangely, it hasn’t consumed all of my thoughts this month.  I haven’t planned this post for weeks in advance…in fact I actually had another post planned for this week when I realized the date!

That is unheard of for me.

Every March I think of two things…what will I get my oldest son for his birthday and how long diabetes has been a part of my youngest son’s life.

This March has been a bit different.  I was busy this March with other things.  For the first few days of the month, I got to spend time with my nephews after not seeing them for a  few years.  I was able to meet my youngest nephew for the very first time.  We enjoyed cuddles and goofing around.  It wasn’t until I was home that I thought about his little life and the life of his older cousin–my youngest son.

When my son was his age, he was being stabbed with a needle somewhere in his body 5+ times per day.  At the age of 3, his little fingers had tiny marks from testing his blood glucose levels 8 or more times per day.  My sweet little nephew had bruises on his knees from playing outside with his trucks.  When my son was that age, he had similar bruises but there were also bruises that would sometimes find his arms, legs or stomach after an injection.

I am so glad that none of my nephews have had to go through this.  I remain in awe of how well my son has managed to cope.  He won’t even notice this day.  Life with diabetes is all that he has ever known.  For him, it is simply be St. Patrick’s Day–an excuse to go out with his friends and have a beer.

I will pause as I always do.  Most likely I will message a dear friend whose son shares this “dia-versary”.  On this day, I will  be extra grateful for the many incredible and lasting friendships that diabetes has brought into my life.  I will also take a moment to cry for the friend who lost her child last year–we were brought together because of our sons’ common diagnosis of type 1 diabetes.

Today I am sure that I will slip back in time for a moment.  There will be a pause in my day when I vividly recall the lifeless child that I held in my arms 17 years ago.  I will remember the prayers that I said and the prayers that were offered as we rushed to the hospital.  At one point today I will see, in my mind’s eye, the doctor who sent my son to ICU and told me, “if he makes it through the next 24 hours, you will need to learn a lot about diabetes.” The phone calls, the terror, the uncertainty will all come flooding back just like it was yesterday.

Today I will quietly cry for the life that was lost but I then I will wipe away the tears.  As I tell others, today is about celebrating.  Today marks 17 years that my son has lived strongly with type 1 diabetes.  He has never let it stop him from doing anything–except for shovelling the driveway in the winter.  He seemed to often be conveniently low as a child during that particular chore.

My son now manages his diabetes his way. I don’t test him.  Rarely do I know what his blood sugar levels look like.  I can’t tell you his insulin to carbohydrate ratio or even his basal rates. Diabetes is his disease to handle now.

It hasn’t all been perfect. There have been stumbles along the way.  I still remain there to help when asked.  We discuss carb counts or extended boluses.  I still do site changes when required. Seventeen years later, we are both finding our way  but he is healthy and thriving.  I can ask for nothing more…except a cure of course.

 

Tips and Tricks…day 5 of Diabetes Blog Week

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Oh my goodness, today’s prompt is seriously probably the hardest of the week.  Share you best diabetes tips and tricks. Do I have any? We put one foot in front of the other hand hope for the best. Does that count?

Okay, tips and tricks…well, the first trick I learned was when my son was first diagnosed.  We didn’t have Rufus the bear with diabetes but I knew that my toddler needed to feel that he was not alone. The way I did that was to give Elmo diabetes as well.  He had a stuffed Elmo that somehow made its way to the hospital with us.  As I was learning to inject a doll, I have my two year old a needle and supervised him giving Elmo injections.

Writing that sounds crazy. I gave a 2 year old a needle? I did. It was a pen needle and the tip wasn’t in it but I gave him the pen filled with insulin and let him pretend to give his stuffed toy an injection.  He was making his friend feel better just like I was helping to make him feel better.  It worked for us!

As he aged, new issues came up and bribery was introduced.  Okay, we didn’t use the term “bribery”, we referred to it as rewards.  If he ate his breakfast without a fuss, he received a sticker.  After a certain number of stickers a reward was earned.  It worked for a bit.

What tips did we use for storing supplies? Well for us storing diabetes supplies was relatively simple…totes.  We have totes on wheels and when they were too full, we also had totes that went under the bed.  This allowed us to have a large supply of glucometers and pump supplies for times when insurance coverage was not available. My son still has both the cart and the tote.

Finally our rule for travel is simple…always pack twice what you think that you will need and then throw in a little more!  Whenever my son travels, he seems to experience a lot more highs than normal.  We do more site changes.  We bring more supplies.

I have also learned to store insulin in more than one place when you leave home.  We traveled across Canada once many years ago.  All of the insulin was in the cooler.  The cooler was somehow put on the heater setting.  All of the insulin was at risk of being spoiled. I never did that again. Insulin is now scattered among bags for safe keeping.

The final trick we have used is all my son.  When your sites are starting to peel up but the insulin is still flowing, you don’t want to make a change and your readings are still good–use duct tape! We have medical tape.  We have opt-sites.  My son uses duct tape to hold his sites in place.  Yes, they do make a mess of your skin after but they do hold your site in! –You may be a diabetes redneck when??

Mothers Day Reflections

In North America, Mothers Day is this weekend.

I have seen that JDRF Canada is doing promotion this week on #Type1derWoman  This looks really fun and I can’t wait to see more.

A few years ago, the DRI did a segment on the Real Moms of Diabetes.  A few of my friends took part. It was equally as moving.

And of course there is the incredible poem written by my dear friend Linda Kaniasty that mothers in the UK put to video.  It still makes me cry.

All of these posts have me thinking about life as a D-momma.  My role has changed a lot over the past 16 years.

I started out as the mother of a toddler with diabetes.  I was lucky.  He didn’t mind the shots.  He was okay with finger pokes.  He hated to eat however.  That was a challenge.

If I had it to do all over again…and it was 2016 and not 2000, well I would be putting him on a pump right away.  There is no need to fuss with injections, a pump would give us the flexibility to let him eat the way  he wanted.  I would have a CGM so that when he fell asleep, I would know if he was just napping versus having a low and couldn’t tell me.

I would still use bribery.  Stickers and rewards were a fabulous way to get through everything from potty training to meal fights.  I would still allow him to inject and have control of the diabetes care for his toys.  This was a great way to give him power.  I would still worry and log like crazy but that is me.

Eventually my toddler grew and went to school.  The worry again was tangible.  I had friends who would be watching out for him in school but I was terrified.  There was so much that could go wrong.

If I had to do it again, I would have released the terror.  He was left in the care of teachers who truly cared about their students.  He had friends who cared about him.  They all would do their very best…or call me if in doubt.  I didn’t need to hover. I didn’t need to stress–as much.  It was okay.  Yes, there would be wrinkles along the way but they were small. He would survive.  We would all learn. It is important to relax a little during these years as greater challenges will come.

As my child became a preteen, the issues again changed. We struggled to find a balance between what he should be expected to do and what I should be expected to do.  I ached that he was expected to do so much.  I grew frustrated when one of us failed.  If I had to give myself advice for that time looking back it would be that it will be okay.  You will find your way.  If he didn’t die,  learn from it…both of you.  Work hard. He is listening in his own way.  It will be worth it.  He can stumble a bit.  Its okay to wipe his knees but he will get it.

When my son became a teen…well didn’t that change everything!  There were now hormones.  There was the teen brain.  There were struggles.  There were worries.  How do you balance allowing him to be a normal teen (with all of the worries that comes with that stage) and being a teen with diabetes? You ask for help.  You reach out to those who have been there…and you pray.

As a teen, my son decided that he knew it all.  He decided that he really didn’t need the care of Mom any more.  He moved away and decided to finish high school while living with his father. I foresaw many problems.  Some of them came to pass…some didn’t.  I felt like a failure. I was a parent whose child didn’t want to live with them.  People reminded me that it wasn’t about me, this was about him.  It still hurt.  My one clearly defined role now became more blurry than ever.

My son is now a young adult.  He is 18 and learning to live with the choices that he has made.  He has stumbled.  He has tripped a few times but he has done okay. He is getting stronger in more ways than one.  He understands his body he tells me.  He is tightening his control.  He has learned. He knows he can still come to me when he loses his way.

So what would I tell that Mom of a toddler now? You’ve got this.

What would I tell that mom who is watching her son head off to school? The school and his peers have your back.

What would I tell that mom of a teen? He really did listen and learn when you were sure he wasn’t.  Somehow you will both live to go through another stage of parenthood.  Some days will hurt but most days will be a blessing because when you look back at where you have been, where things could have gone? Life is amazing!

There are still challenges.  We still have a long road ahead of us.  No matter how old my children are, I am still their mother.  They are still my children. I worry. I care. I love them deeper than I could have ever imagined.  They make me shake my head at times but they also make me proud.

For all of you fellow D-mommas, take a moment and be proud.  Be proud of YOU and all that you have accomplished when faced with this huge burden.  YOU are amazing!

liam barb sept 1999b

 

 

Dear Diabetes, You are 16 now…

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Dear Diabetes;

You are 16 now.

You are old enough to drive.

You are old enough to date.

You are almost old enough to be finished high school and looking towards a new career.

You are old enough to be looking forward to life on your own.

Unfortunately you don’t have any of those plans.

You are a bum.  You refuse to move on to greener pastures.

You have learned nothing after 16 years.  We have found new treatments to fight you. We have continued to live life to the fullest even when you tried to drag us down.

We have made incredible friends even with you clinging on in the background.

We have continued to live a full life even when you decided to make life horrible by sending blood sugars dangerously high and made my son ill or dropped them low so he had to sit on the sidelines while his friends played.

Diabetes, I have had enough of you.  You no longer wake me up at night. You no longer consume all of my thoughts. You still wake my son however.  Your demands still inconvenience him.  You remain as inconsiderate as ever after all of these years.

I would love nothing more than to kick you out of his life.  I would buy you your own car and send you on your way.  Unfortunately that can’t happen.  You are still with my son after all of these years but guess what? Even when you tried to kill him 16 years ago, he survived! No matter what you have thrown at us, we have survived! It hasn’t been easy.  It has cost us a lot but we are still going.  He has grown to be a strong young man.  I have developed a voice that reaches people in places that I never imagined.

Its been sixteen years since that horrific day when you barged into our lives but we are still strong.  We are still fighting you.  He is still healthy and we are winning. You are still an unwelcome intrusion that we simply tolerate and move forward despite.

 

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.

 

 

Diabetes Made me Do it

Its the first day of another Diabetes Blog Week! I am so excited to be a part of this wonderful adventure once again.  As a blogger, it allows me to have topics chosen for me and write about topics that I may not have otherwise thought about.  As a reader, it gives me the chance to see many new blogs that I may not have come across before.  In other words, its a win-win week that I hope you enjoy as much as I do!

Today’s prompt asks me to share  what I have done because of diabetes that has made me the most proud or what good thing has diabetes brought into my life?

Obviously I am proud of the way my son is learning to handle his own diabetes care.  How much of that is up to me and how much is just his personality? We will never know but he takes each day in stride and never seems to complain about his lot in life. I can’t ask for much more than that!

For me personally, diabetes has brought an incredible network of friends.  Those friends have encouraged and inspired me to be involved and help to create changes to the world of diabetes in Canada.

It amazes me to look back at how long I have “known” some of these people.  There are the core group of parents that I met on the Children With Diabetes Parents Email list almost 15 years ago.  They have been with me through the good and bad.  They have been there with a hug or a shove in my personal life as well as in our life with diabetes.  The connections made there have been some of the dearest of any I have ever made.  They are truly the very, very best thing to come out of a life with diabetes.

With their encouragement and prodding, I began to look to see what I could do to better improve the lives of people with diabetes.  It led me into two areas–both dealing with fairness.  First there was the issue of fairness in our tax system.

Not long after my son’s diagnosis, I learned of a thing called the Disability Tax Credit.  In reading the description, I knew that my son qualified. In time,  I came to learn that the Canadian Revenue Agency did not always see things the same way that I did.  Some people with diabetes were qualifying, some weren’t.  Some people with diabetes were fighting for this right in court, some weren’t.  I sought to equalize the playing field and make the powers that be understand what was really involved in living with diabetes.

During this process, I met more amazing people.  There were families struggling to get by. There were adults who just wanted to be treated equitably and see some financial relief from the burden of diabetes care costs.  I interacted with many people, some I still hear from and others I see in posts on various social media platforms.  Each one was vital for their support and their belief in what we could do.

Together we did make a difference.  Today, all children under the age of 18 are given the DTC upon receipt of the T2201 from their doctor indicating a diagnosis of Type 1 diabetes.  Adults are also eligible for this credit but still must first prove that they are intensively managing their diabetes care and that it takes over 14 hours per week.

When I read posts online about people getting this credit or when  I read others advising their friends to check out my website for tips and information, my heart swells. I know that I have made a difference.

The other thing that I have done because of diabetes that makes me proud is my work with parents and educators in regards to sending children with diabetes to school.  This issue has been something that I have worked on since my son was 3 years old.  He will soon be 18.  The situation is not perfect, but I am happy to say that there have been profound and real changes in how diabetes care is viewed in many Canadian schools.

When I began this journey, the only province to have any sort of legislation or provincial policy in place was New Brunswick.  To date, provinces such as Quebec, Newfoundland, Nova Scotia and BC all at least mention the care and treatment of children with diabetes in schools in their provincial education policies.

We still have a long way to go but I no longer receive numerous telephone calls each fall from parents struggling to get help.  I hope that that is a sign that there is more and more support out there for families and students.

Diabetes is a crappy disease. It ruins holidays. It never goes away. Its unpredictable at times and never takes a rest.  It has however brought me a network of friends that have kept me sane throughout the years.  It has allowed me to help in areas that I never would have known about otherwise. For those things, I am truly happy to be able to say that “Diabetes made me do it!”d made me