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.

Live Four Hours at a Time

Its Diabetes Blog week once again!!  A fun time when diabetes bloggers across the internet share their takes on various topics.   Today we look at the challenges of diabetes and how to be prepared.  For me, there is only way way to survive the unrelenting challenges of life with diabetes–that is to live life with diabetes four hours at a time.

live lie with diabetes four hours at a timeDiabetes is overwhelming. Imagine if you will waking up one day and being told “You have diabetes.  You must inject yourself (or your loved one) with some insulin.  That amount may vary but we will start you at this dose.  If you give too much insulin make sure you get some food into you quickly or you will die.  If you don’t inject yourself with enough insulin you will feel horrible, pass out and potentially die.  There is a tool to help you though.  Here is a glucometer.  Lance your finger, place the blood on that strip and then take extra or reduced insulin based on the number that you see. Have a nice day! Come back and see me in three months.”

Does that sound a little overwhelming? It is. It is terrifying! You are now holding something in your hand that has the power to sustain or take away life.

Just in case that wasn’t terrifying enough, they didn’t really go into all of the things that will change how much insulin you need.  If you are sick, you may need more insulin–except for sometimes when you need less.  Did you go jogging last night? Well, that might mean you need a bit less insulin.  Oh, you went for pizza–Heaven help you because  your readings are going to be everywhere.  You may need a bit less insulin right now but in five hours you will need a lot more.  Is the moon full? You insulin needs may change.  Are you menstruating? You may have to change your insulin.  Did your doctor just put you on a steroid? That is going to impact how much insulin you need as well.

Are you starting to get the picture? If you are injecting for a child, add in growth hormones, childhood illnesses, anxiety, stress and a myriad of other things that you don’t think about until you are handed that bottle of insulin and told to go home.

When my son was first diagnosed, I didn’t want to leave the hospital.  I was terrified that I wouldn’t get it right. And guess what? I didn’t. There were a lot of mistakes along the way. Sadly,  I am not a perfect pancreas.  Playing one in real life is a huge challenge but I learned one thing…Live life with diabetes four hours at a time.

Seriously, if you break your day down into four hour sections, your anxiety and stress load can decrease slightly.  Four hours is approximately how long most rapid acting insulins last for.  When you dose for breakfast at 8am, by noon, that insulin is usually gone and you are onto other issues.

I know, but the fat from breakfast can spill over and create havoc at lunch.  The flu bug that is brewing is still there four hours later but that’s okay.  Stop. Breathe. Just look at those four hours.  The four hours that passed are to be examined and maybe changes will be made for tomorrow.  The four hours coming are the next battle ground. Living life with diabetes four hours at a time allows you to breathe just a little.

Take a look at where you are.  What is that reading? What are you going to do? Have you figured out what you are planning on eating? Okay, now dose.  Now live.  Now breathe.  At the end of that four hours look back for just a minute.

How did you do during the past four hours? Were the readings in range? High five!! Do a victory dance.  You were an awesome pancreas!! Was the reading out of range? No problem.  Add insulin.  Add food.  Take a moment to think about what else could have been influencing the reading.  Take a breath and start the next four hours.

Doesn’t that feel better? Diabetes is a challenge.  People living with diabetes are asked to mimic an organ.  That task is monumental.  You cannot eat an elephant in one bite and you can’t take on diabetes all at once. The easiest solution that I have found is to live life with diabetes four hours at a time.

Remember to celebrate your victories.  Don’t beat yourself up for mistakes….learn from them.  One foot in front of the other. One bite at a time.

Diabetes is not a joke. Diabetes kills.

candleDiabetes is not a joke. Diabetes is not about weight or junk food.  This disease requires those living with it to walk a fine line…too much or too little insulin can have catastrophic ramifications. The fear is real and justified.  Diabetes kills. 

The article below was originally published on May 11, 2016.  It was exceptionally hard to write.  As a parent of a child with diabetes, we know that diabetes is deadly but we hope it will never kill one of our own.  When it does….well your world is shaken to the core and is never the same again. 

I think of this family daily.  I can only begin to imagine their pain and the pain of others who have also lost their loved ones to this disease.  We will never forget. We will continue to work towards a cure. 

In the diabetes online community, the appearance of a blue candle suggests that someone has lost their life to diabetes.  Its a time of sorrow and a time during which we hug our loved ones a little closer. It is also a  time to test a little more often before we allow the memory to fade and we move on.

Last week I received a message that made my heart stop.

I headed over to a friend’s Facebook page to verify what I had read.

blue-candleThere was  the blue candle.

My breathing stopped.

I read her post.

The tears began to flow.

Through the tears I sent a message to my friend.  She confirmed my worst fears with her words “I just want him back.”

“Oh, I wish I could bring him back for you!”

That’s what I replied through the tears.  I was numb.  The blue candle was no longer for a stranger who could have been my child.  This candle was for a child that I had watched grow through our online communications. This was happening to a friend who had been there for me through highs and lows of  16 years with diabetes.  I wished I could bring her son back to her.  The pain was too much for me and  I couldn’t begin to imagine how she was feeling. It hurt too much to try.

No mother should bury their child. We shouldn’t have to mourn for those who have yet to have fully enjoyed their lives. There is something fundamentally wrong with that. It makes our hearts ache.

When we hear of a child lost, we hurt but we push it away. It happens to other people.  It is horrible but it happens to other people.  But what about when it doesn’t? What about when it hits your family?

Last week it hit my family and the pain is still fresh.

15 +years ago, I became connected to the internet.  I reached out to find “parents of children with diabetes”.  Instead I found an information email list, or so I thought but what I really found was a family.

I found people, some that I would meet, some that I would talk to on the phone, and some that I would never know beyond the keystrokes of a keyboard. All of them would become family.  They would be by my side through the good times and the bad.  They would understand diabetes –its peaks and valleys but they would also understand me.  This incredible online community would be there for me at all hours from around the globe.  They were Friends for Life–they were family.

Over the years, some of those connections have been neglected.  Our children have grown and some of  our children have become parents themselves.  We have watched each other’s lives on Facebook and occasionally we wish each other well.

Other connections remain strong. We reach out regularly.  We have remained in contact and fondly look back on where we have been.

No matter whether we are close or drifted, when tragedy strikes we are all one big family again. One family united by pain–sobbing with each other.  A family holding each other in virtual hugs through real tears.

Tragedy isn’t supposed to hit us. Not a direct hit  like this one.  Diabetes in to supposed to take a child that we “knew” and watched grow but it has.  The pain is unbearable.

I know that the pain will fade for some of us.  It will dull a little for my friend but that missing piece will never be replaced.  I am lucky.  In 16 years, my son has stayed quite healthy.  In all of this time, I have only known of one person–whom I had met, spoken with, and been friends with, who had died because of diabetes but now there are two. Those are two too many.

I don’t want there to be any more.  There must be a cure.  People with diabetes deserve better access to treatments.  We need more awareness. We need more…

Those of us in the diabetes community  will continue to work harder. Some people will bike more while others will walk more. We will all advocate louder.

Our hope will remain.

We came together because of diabetes but we have stayed together because of  incredible friendships that knows no borders.  I pray that one day we will celebrate a life without diabetes.  Until then, hug your loved one a little closer today.  Send prayers and strength to the families who have lost someone during our fight. I am grateful to each of you who have become such an important part of my life.

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.

 

 

RDSP–What was the catch?

Years ago, when the RDSP first came out I was skeptical.  Free money even from the government sounded too good to be true.  Friends encouraged me to open an account for my son. They emphasized, “the government is going to give YOU money for just putting in a few dollars!”   I still continued to wonder “What was the catch?”

For those who don’t know, an RDSP or  Registered Disability Savings Plan is long term savings plan created by the Canadian government. There can only be  one plan per person.  That person must have an approved Disability Tax Credit application on file with the Canadian Revenue Agency .  Unlike an RRSP, with the RDSP  the government will provide grant money to the investor that can then be invested and earn its own income.

When I first opened the plan for my son, my understanding was that the government portion (the grant money) had to stay in the account for a period of 10 years before it could be withdrawn.  In my mind, this meant that the money that I put in when he was 15 coupled with the grant money would cover a new insulin pump for my son when he turned 25.  I was wrong.

An RDSP is meant for long term savings for an individual who has serious health issues.  You can take the money that you put in out at any point.  When you make that withdrawal however, the government portion must also be returned.

In my case, I didn’t want to take the money out right away, I wanted to leave it for 10 years.  There is however another catch.  According to rdsp.com, “Disability Assistance Payments (DAP) can be made from an RDSP at any time, but grants and bonds may need to be repaid if they have not been in the plan for at least 10 years.” This meant that no one could contribute to my son’s RDSP for a period of 10 years prior to taking any funds out if we did not want to be penalized.  There could be no grant money for that 10 year period or the amount that I contributed had to be more than the government’s grant portion. That was not what I had been aiming for.

“Payments in the early years of a plan are limited by the assistance holdback rule. Since all grants and bonds received in the previous 10 years must be repaid once a disability assistance payment is received, the plan must hold back an amount equal to that amount in case a benefit repayment must be made. In some cases, that can prevent any disability payment at all.” states RDSP.com

What does this mean? 

RDSP are not the short term savings vehicle that some of us had hoped for.  They are a long term savings for those who cannot afford to save for their own long term medical expenses.

They still offer “free” money unlike any other plan but like other retirement plans, require the owner to be in his/her senior years before needing the funds.

It has been suggested that for parents contributing for their children, they should look at it as a safety net in case something happens to the parent.  If parents were to pass early, it would give the child a bit of extra help in their care.

For me, it is an individual choice that should be made with the help of both your accountant and financial advisor. I think that you have to have a clear idea of when and how the funds are to be used.  At that point, you can better decide which of the current savings options are best for your family and your situation.

rdsp blog

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?

 

All opinions expressed below are the result of years of sleep deprivation and worry caused by Type 1 diabetes