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Six things not to say to parents of children with diabetes

things you dont say to a parent of a child with diabetesPeople generally mean well but sadly many just don’t think before they open their mouths.  I therefore thought that it might be a good idea to create a little list for them of thing that you really should NOT ever NEVER say to parents of children with diabetes. Consider it a personal service announcement if you will…

My cat had diabetes

Really? Seriously? Because we know that you injecting your cat’s fur with insulin is really identical to chasing a toddler around the room with a syringe,  pinning them down and explaining that you are stabbing them for the fourth time today because you love them.  Yes, I am sure they are exactly the same.

Yes, there was an eye roll here.

My great-aunt Thelma died of diabetes

Thank you.  I needed to hear that.  I have guilt on top of guilt about not protecting my child from this disease and you tell me that your 90 year old aunt died because of diabetes?

Odds are that she had Type 2 diabetes and at 90…well her odds weren’t the greatest for lasting long anyway but yeah, I can see where I needed to know this.

This is why parents of children with diabetes have bruises on their heads. They spend a lot of time banging it against a wall in frustration. .

Don’t worry. I am sure that your child will grow out of it.

The odds of my child outgrowing their diabetes are lot  less likely than as you overcoming your ignorance of what type 1 diabetes really is.

Nope, growing out of diabetes is not an option.  My child’s pancreas is just no longer doing its job.  We have tried everything we could to revive it but its dead. Gone. No functioning beta cells to produce insulin.  No hope.

On the upside, I would really encourage you to do a bit of Googling or even ask some questions of me and then listen.  Truly listen to what I will tell you and you might be surprised at what you can learn. Your ignorance can be cured!

Perhaps if you hadn’t given your child so much sugar, then he/she wouldn’t have gotten diabetes.

Perhaps if you had not thought that they said “trains” when they were handing out “brains” and decided that you didn’t want to go for a ride, you would have a bit more of a clue.

Having a child with diabetes brings enough guilt.  I fret over what I could have done. I berate my faulty gene pool for allowing this to happen to my baby. Despite these things, I did not cause my child to develop diabetes. What my child ate had nothing to do with his diagnosis.  Really.

Would she prefer a diabetic chocolate?

Eeeekkkk!! Run! Fast! Actually if you eat many of those chocolates you will have to run fast–to the washroom.  Many diabetic candies are filled with sugar alcohols that can cause diarrhea.

Thankfully, my child is able to balance insulin injections with food intake so regular candy is just fine.  We do appreciate you trying though.

Perhaps you may want to relook at how many of those candies you have as well.  I kid you not.  They are nasty!

Is their diabetes under control?

Control? What is that???  A parent of a child with type 1 diabetes is trying to keep a blood sugar fluctuation of .54grams per liter on a constant basis despite over 25 influencing factors trying to mess with things.   Imagine that…trying to maintain a balance of less than one gram of sugar with the influence of stress, food, exercise and 20+ other things!  Can you see why  as parents we simply celebrate when they get even two readings in range?

It’s a big deal.  Diabetes is a really complicated disease.  Most parents of children with diabetes are doing their very best to balance allowing their child to be a normal kid and trying desperately to manage blood sugar levels so that their children feel healthy.  It is a huge challenge.

Parents of children with diabetes appreciate when you care.  Really we do, but please, please, please, think before you speak!

There are certain things that you really truly should not say to parents of children with diabetes.  Offer them a smile, a sympathetic ear, a kind word even.  Honestly, they are much more appreciated.

How to Fight for the Disability Tax Credit with Type 1 Diabetes

How to fight for the DTC with T1DDiabetes Canada recently released a statement claiming that the Canadian Revenue Agency (CRA) is now declining 80% of applications for the Disability Tax Credit (DTC) submitted by people living with type 1 diabetes.  I cannot confirm or deny these figures. I can state that I am seeing a significant increase in the number of people contacting. They are reaching out because they  or  their clients have been declined for the DTC.

What is going on with the DTC?

No one seems to know.  CRA claims that there has been no change in policy.  Public concern seems to suggest otherwise.

For years, people with diabetes have often received a follow-up letter when they have made their application asking for more details from their doctor.  In the past, that letter was filled out in a similar manner to the initial application and the claim was approved.  This seems to be happening with less frequency now.

People living with diabetes are often receiving a letter stating that “an adult who independently manages insulin therapy on a regular basis generally does not meet the 14 hours per week requirement unless there are exceptional circumstances.”.  In some cases this is followed by a request for more information but in other cases it is part of the denial for their claim.

Does this mean that I should not apply?

No.  People living with diabetes usually spend over 14 hours per week to intensively manage their diabetes.  Granted this does not include all people living with diabetes but does include a large majority.

You should continue to send in your detailed applications. Make sure that you are adding tasks that are approved and that your total is over 14 hours.

What happens after I apply for the DTC?

Once you and your doctor have completed your forms and returned your application, there will be some time before you hear back from CRA.

Odds are high that your doctor will be contacted and asked for more information.  Again, make sure that the follow up letter is detailed. Take care to  clearly show that you spend over 14 hours per week on your diabetes care.

What if I am rejected?

If you are turned down for the Disability Tax Credit, you have a few options.

First you can ask that your file be reassessed by another officer.  Sometimes fresh eyes will give a fresh perspective and the ruling can be changed.

Second, you can formally appeal their decision within the first 90 days of your rejection letter.  This is a detailed process but does not necessarily require a lawyer.  If you choose to go this route (and I would encourage everyone to do so), be sure to keep careful and detailed records. You must also contact CRA for a copy of your file under the Access to Information Act to better understand what you are fighting against.

Write your Member of Parliament

Finally, at any stage of the process, I would encourage you to ask for the assistance of your MP.  Whether you are thinking of applying, have applied or have been rejected, it is important for Members of Parliament to be aware of this situation.  Diabetes Canada has written a great template for people to send to their MP.  Download the letter. Be sure to personalize it to your situation and forward it on.  Remember that letters sent to a Member of Parliament in Ottawa do not require postage.

The more MPs that contact the Finance Department and ask them what is going on, the stronger the case for change and fairness.

Together we were able to get access to this credit for some people living with diabetes over 10 years ago.  Working together again, we will create change for even more individuals!

Animas, We are Heartbroken

Animas insulin pumpers heartbrokenJohnson and Johnson announced on September 5th of 2017  that they were closing the doors on their insulin pump division in Canada and the US.  Animas Insulin Pumps would be no more. Animas insulin pumpers in North America were heartbroken.

While some saw it coming in the corporate rumour mill, others were blindsided.

Animas had done something that many companies in many industries are striving to do…they had  created a feeling that you were family.  Whether you were an Animas insulin pumper or you used another brand, you had probably attended an Animas event and were treated royally.

The employees with Animas all seemed to genuinely care about you.  They checked in on you and took the time to know your family.  I had the pleasure to work closely with many members of the Animas family over the years.  They will be huge assets for the next company that employs them. I am sure that many of them are just as saddened as we are.

This is not the first time that an insulin pump company has closed its doors.  We have been here before…twice.

Cozmo (personally a pump like no other) closed its doors in 2009.  We still have two in my son’s closet.  I have friends who still wear this as their pump of choice.  It is doable even 8 years later.

Most recently, Asante, a pump revered by many who tried it,  was also forced to step away from the insulin pump market.  Their users were devastated.  They were heartbroken and felt lost–just like Animas insulin pumpers are feeling today.

How did they go forward?

One step at a time.  The great thing about insulin pumps is that, while some have quirks, many are pretty sturdy and last.  If you have more than one pump in your house–usually because one was out of warranty and you  purchased a new one right away “just in case”, relax.  If for some reason, you current pump stops functioning, go back on your old one while you decide which pump to try next! Just make sure to write down those settings and keep them in a safe place.

What do I do now?

You don’t have  to stockpile supplies   You don’t have to run out and buy a new insulin pump tomorrow.  The Animas press release stated that warranties will continue to be honoured until September 2019. Cartridges will be be available until that date as well.

Statements from both Animas and Medtronic note that supplies will still be able to be ordered in the same way as before. Nothing changes, except when your Animas pump stops working, you will not be able to purchase a new one.

Thank you…

So while we take a breath and rethink our next steps…our next pump…our next option, I want to take a moment and say thank you.  Thank you to the men and women who worked so hard to make Animas a different company.  I truly appreciated getting to know so many of you.  You brought us a new experience in caring.  I hope that we meet again soon, with a new company perhaps bringing new options in diabetes care.

Options are the most important thing.  Make sure to always know your options and always choose the option that works best for you and your lifestyle.

 

9/11 and Diabetes Created New Concerns

Remember 9/11This post was originally written in 2012.  The sentiments remain the same. 9/11 was horrible.  When you live with diabetes, 9/11 brought out fears and concerns that you would never previously have considered…

September 11, 2001.  Is there any adult in North America who does not remember where they were on that fateful morning?

I  had left my house early to drive to the airport 2.5 hours away to pick up my grandmother who was coming to visit from the other side of the country.  My oldest son was in school and my youngest was with me for the ride.

I stopped to do a bit of shopping and was looking at paper towels when my cell phone rang. I was told  “A plane has hit one of the towers in New York. There has been a terrorist attack.”   It made no sense to me and I didn’t believe it.  There had to be a mistake so I continued my shopping  before the next leg of my trip.

A few minutes later my phone rang a second time.  This time it was a woman from Air Canada who said,  “We have your grandmother here.  The plane can’t fly her  because all air traffic has been grounded.  We will be putting her on a boat and you can meet her tomorrow morning.”

What? The terrorist attack was real? Planes grounded?  I was shocked to the core as  I spoke to my grandmother who was in great spirits and excited to experience an Atlantic Ocean ferry boat crossing.  We  headed home and like many others, I alternated between being glued to the tv and checking my computer for updates from friends and family.

I had recently found an online support group  for parents of children with diabetes. The people there had not only become my lifeline, but also my family.  We were frantic to hear from people that we “knew” living and working near the towers in New York.

I had a cousin who was an NYC police officer. I had to find out if he was working that day or safe with his family on Long Island. Another cousin was due to go to traffic court that day in one of the Towers and I wondered if he went before the collapse? It was a day of chaos, fear and some relief.

By the end of the day, everyone was accounted for.  There were a lot of prayers for those lost as well as those who made it out alive.  As the dust settled–figuratively and literally, a new fear began to permeate.  I live on an island in the middle of the Atlantic Ocean and can easily be cut off from the rest of the world–the rest of my family.

More importantly, if we were cut off how would I get insulin or diabetes supplies? My youngest son relies on insulin to live.  What if we couldn’t get it as easily any more? How would I keep him alive?  What if the terrorist attacks continued? Would they target pharmaceutical factories? Could I feed him no or low carb foods? Would he be okay? I could feel the panic welling.

I wasn’t alone in my concerns.   Other friends with children with diabetes were thinking similar thoughts but some were  much more resourceful than me.  One friend investigated getting insulin from rabbits to use for her child.

Thankfully we never had to be concerned with any of those fears coming to pass.   My grandmother is now passed on.  Each year, we all continue to  remember exactly where we  were on that day and we say an extra prayer.

For those of us living with diabetes, we give an extra pause.  We remain grateful for access to the supplies that keep our loved ones alive.  It is oddly funny however that once diabetes enters your life, it permeates everything–even memories of disasters.

Preparing for Disasters with Type 1 Diabetes

diabetes emergency listThis year we have seen many mandatory evacuations because of both hurricanes and fires.  When you live with diabetes in your home, how do you prepare for disasters? Do you have a list of evacuation supplies checked off and ready to go?

People in the hurricane states, often have a emergency tote or bag that they can grab on the way out of the door but remembering everything that you could need can be a challenge.  Over the years, we have come up with a detailed list of evacuation supplies for people with diabetes on the Diabetes Advocacy website.  In lieu of recent events, I thought that it might be a good time to go over some of the items with you.

Keep a container near the door

As I mentioned, it is important to have all of your supplies in a quick, easy to grab container.  Evacuations can be planned, but sometimes you are only given minutes to have all of your valuables ready to leave.  Make sure your diabetes bag is always in the same place so that you won’t waste valuable time trying to find it.

Packing Basics

Make sure that you have some of the basics like a Frio pack if you live in a warm climate.  You will also want a flashlight and spare batteries in case your area loses power.  Candles and wooden matches can also provide light and heat if need be.

A first aid kit should also be in your emergency container. While you may have a lot of diabetes supplies, other medical emergencies can happen and basic first aid is a must.  Don’t forget to add anti-diarrhea and anti-nausea medication to your kit.  You should also have copies of all prescriptions in case you are away from your home pharmacy and need to access your medication refills.

Food and drink

We have all seen the images of people stocking up on cases of water and in an emergency it is vital.  If you have drinkable tap water, fill up milk jugs, juice jugs and other items with water to take with you.  Also pack juice packs, tinned food as well as cheese and cracker snacks. If you pack tinned items, don’t forget a hand can-opener as well.

Diabetes Supplies

It is recommended that you pack two weeks worth of diabetes supplies with you during an evacuation.  Consider bring a spare meter, spare batteries, alcohol wipes, pump supplies, insulin, syringes, ketone strips, and medical tape.

Other items to remember

Don’t forget to bring spare blankets, cash in case bank machines are down, and pet food for your furry family members.

I am sure that I have forgotten a few things but I would suggest that you view the Diabetes Advocacy Emergency page and print off a copy of the emergency supplies checklist.  This will help you feel a bit more prepared should a disaster hit your community.

Fiasp Insulin. The New Kid on the Block

Fiasp Insulin the new kid on the blockIt has been a long  time since the diabetes world has seen a new rapid acting insulin brought to market.  The last one that I can remember was  Apidra released back in 2004.  It is  not surprising  then that the release of Fiasp by NovoNordisk is creating a lot of buzz.  Not to be let out, my son recently began using this insulin. Since Fiasp insulin is the new kid on the block, I thought I would give everyone a brief rundown on the highs and lows associated with it.

What is it?

Fiasp insulin was released by NovoNordisk onto the Canadian market in March of 2017.  Many of us scrambled to get a prescription because it promised better blood glucose levels without pre-bolusing for meals! According to the press release, you can dose up to two minutes before a meal and up to 20 minutes after starting a meal without compromising overall glycemic control or safety!*

How is it different?

A Medscape article states that  Fiasp is  absorbed twice as fast as its counterparts.

It does this with the help of  two excipients–Vitamin B3 is responsible for the increase in the speed of absorption and Amino Acid (L-Arginine)  has been added for extra stability.**

What do users think?

All of this science is great but most people are wondering how well it works in real life settings.  From what I have seen, the bulk of users really like it.  I could only find one person out of about a dozen users who had returned to their old insulin aspart.

When I asked my son for his review I was told “I still have highs. I still have lows BUT if I have a heavy carb  loaded meal, Fiasp kicks butt and I don’t have the same crazy swings that I always did before.” For a 19 year old who can definitely binge on carbs, this is huge.

Other users seem to have  had similar results.

Some people with diabetes found that the insulin peaks were no longer as pronounced.  They had some difficulty battling highs with Fiasp however while others found it perfect for corrections. In fact some people are purchasing Fiasp just for corrections.

Other users explained that the faster insulin action allowed them to more quickly respond to rising blood glucose levels.  This in turn meant resulted in much  tighter control.  The quick action has  also left one user to caution about the timing of any  prebolus.

Most seemed to agree that Fiasp insulin resulted in fewer food spikes and more stable blood glucose levels but as I said not everyone loves it.  For some users, their traditional rapid acting insulin seemed to work better.

Final thoughts…

All in all, most people with diabetes who are  trying the new kid on the block seem to be happy with it.  It offers another insulin choice  for those who struggled with post-meal spikes or don’t pre-bolus meals.

It must also be noted however that while Fiasp is not currently approved for use in insulin pumps in Canada, both those on insulin pumps and MDI are using this insulin aspart.

Finally, I was also happy to see that the price of Fiasp insulin was par with NovoRapid.  This meant that there was no need to worry about an increased cost for out of pocket insulin expenses.  My understanding is that Fiasp insulin is not yet on many (or any) provincial formularies.  This most likely will mean that if you decide to use the insulin and are currently using a publicly funded program, you may have to either pay for this insulin out of pocket or speak to your doctor about having special authorization added to your benefits to ensure full coverage.

Please remember to check with your diabetes team before starting any new insulin regimen. 

*http://www.novonordisk.ca/content/dam/Canada/AFFILIATE/www-novonordisk-ca/News/Fiasp_Launch_PR_English.pdf

**http://www.medscape.com/viewarticle/877892

 

The 8 things that diabetes has taught me

8 things diabetes has taught me
8 Things that Diabetes Has Taught me

I was scrolling back through old blog posts and came across a  post from 2011 titled “What I have learned“.  The title made me curious so I reread it.  It was a  pretty good post but it only listed five things so I thought I would show you the list and add in a few more things.  Here are the 8 things that diabetes has taught me….

Diabetes has taught me that it is all my fault.

I have two children. I breastfed both of them but one of them received his mother`s milk for longer than his brother.  One of them went on soy formula earlier than the other.  That one is of course the child who developed Type 1 diabetes.

Diabetes has taught me that I fed my child too many sweets.

Yes, the child who prefers cantaloupe to oatmeal cookies and was once caught stealing strawberries because they were “so cute”, was fed too many chocolate bars as a baby.

Fruit is the same as chocolate right? A banana and a chocolate bar are exactly the same right?  They are sweet I guess so they must both cause diabetes.

Diabetes has taught me that my two year old must have spent his entire life as a couch potato.

Well, he was a great sleeper until his diabetes diagnosis.  He napped regularly, went to bed early and slept through the night much sooner than his older brother.  He did watch 20 minutes of TV per day when he was a bit older when he wasn’t chasing after his brother or riding his toys around the house and yard.

I have learned that my son has the really bad kind of diabetes.

Life with diabetes has taught me that there is a good kind and a bad kind but my son must have the really bad kind because he wears an insulin pump.

After 17+ years of life with diabetes, I have yet to meet someone with the good kind of diabetes but I am sure that whomever they are, they are pretty happy with that diagnosis.

I have learned that his insulin pump does all of the work in managing my son’s diabetes.

Yes, we just push a button and let ‘er go! If only it was that easy. No blood tests, carb counts, highs or lows…ah wouldn’t it be amazing! Perhaps when the artificial pancreas is available this will be true.

I have learned that my son is lucky to have been diagnosed so young because he can grow out of it.

This is news to the many adults who are now living 20, 30 and 50+ years with diabetes.  I guess they haven’t really grown up yet.  My son is 19, outweighs me and is taller than me but in many ways he still isn’t completely grown up either. Perhaps there is still hope for him too!

I have learned that diabetes is no big deal.

Everyone’s grandmother or great uncle has had diabetes and died from it but diabetes is not a big deal.  The secret is to avoid that sugar! Its evil, except for sometimes when you have to have a chocolate bar because your sugar is high or something right?

I have also learned that there is no  cure for stupid.

When you live with diabetes–directly or as a caregiver, you will run across people who are ignorant about the disease.  Heck, I was clueless before my son was diagnosed with diabetes.  Some of those people that you run into will be kind and willing to learn.  They will be open to listen and want to truly understand what you are going through.

Then there are the other people.  Those are the people who will share with you how Okra can cure your diabetes.  They will tell your six year old to take care of themselves or they will lose a leg like Aunt Eugenie.  These people will cut you short when you try to explain how an insulin pump works.  These are the people that you feel sorry for.  Their minds are closed and they have a fatal disease called ignorance.  There is a cure for ignorance, its called education but they are further hinder by a lethal dose of stupid.  Sadly there is just no cure  for stupid.

What has diabetes taught you?

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.

Diabetes is an exceptionally costly disease

Its Day 2 of Diabetes Blog week and today we look at the high costs of diabetes care.  Diabetes takes a toll on the person living with the disease, on their relationships and on their wallets. Diabetes is an exceptionally costly disease.

diabetes is costlyFrom the moment the diagnosis comes in, your world begins to shatter.  Quickly you learn that the days of grabbing a snack on the run or leaving the house with just your keys are over.

Diabetes means that your brain must constantly be on.  You must always be thinking about carb counts, blood glucose levels, insulin on board, and a thousand other factors that were previously irrelevant to you.  The mental exhaustion is real.  The toll on the person with diabetes, their caregivers and those around them is significant.

When living with diabetes, it is vital to have supports and to use them! When a friend or partner offers to help, accept it. It doesn’t matter if they do things a little differently.  If no one dies, then it’s a win.  Accept the help.  Take a break. You need it.

Unfortunately it is not just the emotional and physical aspects of diabetes care that can be taxing.  Diabetes is an exceptionally costly disease when it comes to your finances as well.  If you don’t have excellent  insurance coverage, the stresses of life with diabetes are magnified a thousand times over.

For those of us living in Canada, there are a few benefits. First, we don’t have the absolutely ridiculously high insulin costs that our friends to the south are being subjected to.  My son was pleasantly surprised when he was forced to buy his first vial of insulin and it cost him less than $40.

$40 for a person who is in school and working part-time is enough of a cost however.  Thankfully his expense is temporary.  He has two options for coverage. He is trying to get back on his father’s insurance because he is in school.  If that becomes more of a hassle than it is worth, he can still apply for the provincial drug plan to help offset the costs of diabetes supplies.

If you don’t have those options however, diabetes is exceptionally costly.  In February of 2015, I sat down and figured out exactly how costly it would be for me to have Type 1 diabetes and use an insulin pump.   I don’t have private health care coverage, I am too old for the current provincial insulin pump program and I wouldn’t qualify for much of a rebate through our provincial program because of income.

For me to use a sensor augmented insulin pump to maintain my diabetes care, in 2015, I established that it would cost me approximately $14,500 per year.  That is over $1200 per MONTH.  Obviously this total would be drastically reduced if I just wanted to use a syringe and injections.  Either way, I would still require insulin, syringes, test strips, ketone strips, alcohol swabs and glucose tablets to just name a few items to stay alive.

Can you imagine being a young adult and having to save, at minimum, the amount of a car payment just to cover your expenses? What if you wanted to have a family but you have diabetes? You need to be able to afford diapers, clothes, food and diabetes supplies for yourself.  Even those who no longer have children are not immune.  No matter what your age, you carry the need to pay for life-sustaining medical equipment for as long as you live.  That must be exhausting.

There is no cure. There is no end in sight.  All those of us who love people with diabetes can do is continue to offer emotional support.  We can continue to assist with care and those of us in the advocacy realm can continue to ask governments and insurance companies to provide greater help.  Diabetes is an exceptionally costly disease. We must do all we can to help our loved ones deal with it.