Back to school with diabetes

Back to school with diabetes

Heading back to school can be stressful.  There are new books to buy.  Every child seems to need classroom shoes, gym shoes, walking to school shoes and then there are the gym clothes, jeans and more! The list is endless but when you are a parent of a child with diabetes, there list is longer.  Thankfully there are a few basics to remember when sending your child with diabetes back to school.

Meet with staff

No matter where you live, you should always make sure that you have a meeting with school staff before your child heads back to school.  If you live in an area that has 501 plans or any sort of diabetes care plans in place, this meeting can be where details are finalized.  If you don’t have any sort of official plans in your district, a meeting with staff is still important.

You want to meet with staff to discuss what they can expect when they have a child with diabetes in their school.  While your child may not be their first child with diabetes, each child’s care needs are different. It is important that they understand your child’s individual treatment plan.

At this meeting you will work together to establish roles.  Carefully outline what do you expect from the teacher and the support staff. Make sure that they understand what they can expect from you.  Finally,  ensure that everyone knows what tasks your child can do on their own.

You should also discuss things like, how will exams be handled?  It is important that school staff understand that  diabetes can cause cognitive impairment when the child is out of range.

You also want to establish a method of communication. The school  should understand that they can contact you and that you would like to be able to stay in touch with them.  Working together will make the year go smoother for everyone.

Click here for a few more ideas of what to take to this meeting.

Gather diabetes supplies.

 

 

Depending on the age of the child, the list of supplies that you require can be different.  A small child will require a change of clothes just in case he/she is high and has an accident in school.  An older child may require access to a phone or cell phone to ask you questions about their care.

Here are a few basic items that can be left in a backpack or put in a safe place at school.

  • juice boxes or glucose tablets
  • granola bars or other carb rich  and carb free snacks
  • spare test strips
  • meter batteries
  • pump batteries
  • a spare glucometer
  • extra needles or pen tips
  • spare insulin vial (to be kept in a fridge)
  • ketone meter and strips
  • spare infusion set
  • spare insulin reservoir
  • alcohol swabs
  • hand wash
  • water bottle
  • sharps disposal container
Other things to remember

If your schedule allows, volunteer to be a part of activities at school.  This will give you a chance to get to know school staff and they will learn a bit more about you.  It will also allow you to discreetly keep an eye on your child’s care without them feeling different.

For younger children, check to see if supports or nurses are available through your district.  The school may be entitled to extra funding that would allow them to have one on one care for your child for all or part of the day.

Make the year fun! Your child is a child first.  Plan ahead with staff regarding things like parties, extra curricular activities, outings and exams so that your child gets the most out of their school year.

For a guide to care policies in many Canadian schools please check out this link.

 

The Disability Tax Credit for Adults…What you need to know

Disability Tax Credit tipsThe Disability Tax Credit is a non-refundable tax credit available to Canadians who meet a very strict criteria set out by the Canadian Revenue Agency.  One of the criteria is that you must take over 14 hours per week to perform life-sustaining therapy.  This is the section that many people living with diabetes qualify under.  Before you apply there are a few things that you need to know.

Having diabetes doesn’t mean that you qualify.

Not everyone with diabetes will qualify for the Disability Tax Credit (DTC).  The criteria states that children with Type 1 diabetes qualify . Adults (anyone over 18 years of age) however, must show that they spend over 14 hours per week on their care.

Why do children get the DTC so easily?

The reason that children qualify  for the Disability Tax Credit is because CRA feels that the time that they spend on their care AND the time that their parents spend on their care, together is equal to more than 14 hours per week.  Adults do not require the help of others for the most part. Therefore must prove that they, themselves spend over 14 hours per week on therapy to keeping themselves alive.

Do I really spend 14 hours per week keeping myself alive?

That is a question that only you can answer.  I will say that if you are intensively managing your diabetes, then more than likely, you do take an inordinate amount of time out of your day to manage your diabetes care.

A person who is not reliant on an external source of insulin to live does not have to be concerned about blood glucose readings, anticipated activity levels, impending illness,  or fat contents of meals when planning their day to day activities.  The average person does not have to draw up a syringe, put in an infusion set or calibrate a continuous glucose monitoring sensor.  A person without diabetes does not have to keep track of their insulin requirements, blood glucose levels or activity levels in a journal.

These tasks, while commonplace for a person with diabetes, are all tasks that are recognized by CRA and count towards the 14 hour total required to be certified for the Disability Tax Credit as requiring life sustaining therapy.

I hear that adults no longer qualify so why should I try?

Some adults are experiencing a harder time getting the tax credit.  There can be many reasons for your application being denied.  You may be including tasks that are not recognized by CRA as being an allowable part of therapy.  Things like grocery shopping, doctors appointments and trips to the pharmacy are not allowed to be included in your total.

Another reason that adults are being turned down is because they are not providing details on their own specific care.  Often people are turning to internet groups that have sample forms filled out. They then simply copy and paste the details that they have found. You should be  using that information as a guide and filling out the application in your own words with your own specific care details.  CRA is noticing a pattern of applications and is now beginning to question their authenticity.

What does that mean?

It means that you need to make your application your own.  Spend one week detailing what you do each day.  It will take you a lot of time to stop and write everything down.  Time each task.  Note how often you perform it.

Take this week’s worth of information and then compare it to your online resources.  Eliminate the tasks that CRA won’t approve.  Add in the tasks that you did but forgot to add in your personal list.  Now total your time spent.  Most likely, you will find that you spend more than 14 hours per week on your care.  This data can also be shared with your doctor at your appointment. It will help he/she understand who much time you do put into your care.  This will further be of use if he/she if they receive a follow up letter from CRA asking for more details on your care.

Adults with insulin dependent diabetes who test regularly (6+ times per week), who inject insulin multiple times per day through injections or an insulin pump, and make their own adjustments to their insulin regimen should apply for the Disability Tax Credit.  If you are turned down, you have the right to ask for your application to be approved by another CRA staff member. Sometimes the second review still does not turn out in your favour but don’t despair. At that point,  you have the right to see all correspondence used in your file and begin a formal appeal process.

If you are unsure of how to fill in your application or you just want someone to review your totals, I can assist you. Email me or check out the Disability Tax Credit page for more details on receiving assistance.

 

Diabetes is hard! Some days you’re the windshield…some days you’re the bug

This post was originally written in 2009.  My son now manages his own diabetes care .  He wakes for his lows.  He treats his highs but one thing remains the same–diabetes is hard no matter who is responsible for care for the daily tasks. 

Diabetes is hard

“Some days you’re the windshield, some days you’re the bug.” Today I am definitely feeling like the bug!

It was after midnight and of course I was dying to get to sleep. I had set my alarm for early the next morning.  It would be my son’s last day of school.

I found a meter and a strip. I grabbed a lancet, waded through all of the junk that the boys had left on the stairs rather than putting away and was off to test my son’s blood sugar level. I hope it would be the last check for a few hours. One check and I could sleep!

We had been out for pizza earlier that day to celebrate good grades so I was certain that my youngest son would still be high. He had been  16 mmol (288) earlier in the evening  so you know I was certain that I was  going to be able to rest.

Wrong! Diabetes doesn’t work that way.

I took the meter. I lanced his finger  and created a pool of  blood. The strip refused to suck. What the???? Okay, I cleaned the finger. I got more blood. I tried again. The glucometer just barely accepted the blood. I waited for the reading…E5. It was an error reading!! There hadn’t been enough blood to get a blood sugar reading. Oh the lovely four letter words that were on the tip of my tongue as I headed back downstairs to get new equipment.

I found a new meter. I was certain that this one had to be better than the last. A new test strip was in my hand. The same lancing device was being used. Back up the stairs I went.  This time I grumbled and picked up items as I went.

Once again, I lanced my son’s finger. Again, I got a large amount of blood. The strip sucked the blood  this time! I walked towards the stairs not even considering having to correct a high blood glucose reading. That was a good thing because he didn’t need insulin.  He was 3.2 (57). He was low!

I uttered a few more choice words as I shuffled off to get some juice. I filled a glass, found a straw and trudged up the stairs for a third time in less than five minutes.

My son wasn’t keen on drinking. I continued to cajole him until he finally began to  sip. Thankfully he drank it all except the last few drops. Those were sucked up into the straw and somehow flew all over his pillow.  I was not happy.  There was now strawberry juice all over a cream pillow case.  I cleaned it off as best as I could and  waited.

Fifteen minutes can become a lifetime when you are dying for sleep. These are the moments when you just think to yourself…diabetes is hard.  Why us?

Eventually it was time to retest.  He was  5.5 (99) and I was finally off to bed for two hours before it would be time to test again.

Diabetes is hard.  Diabetes care is a challenge.  Some days things seem okay…and other days you feel like you are a bug squished against a windshield.

 

 

Tips for Managing Diabetes in the Summer

diabetes family summer partyIts summer!! I mean it really is finally summer! Some areas have been enjoying great weather for a bit but where I live–well, I kind of wondered if summer was ever going to show up.   Now that it is really here, let’s talk about a few tips for managing diabetes in the summer months.

Keep your insulin and test strips cool.

Summer heat can literally ruin blood glucose test strips and insulin.  If you are on injections, make sure to keep your insulin stored in a cool place. If you are pumping, again, make sure that your pump doesn’t get overheated.  You may even want to consider changing out your cartridges more often to ensure that your insulin is fresh and hasn’t been compromised by the heat.

Test strips also react to extreme temperatures.  Again also make sure that they are stored in a cool place.  If you are traveling to the beach or theme parks, you may want to invest in a FRIO Insulin Cooling Pump Wallet.  They are convenient little cooling packs that will help to keep things chilled.

If you don’t have access to Frio packs, another great suggestion is to use frozen juice packs.  You can keep your supplies cool and are prepared for lows!

Mastistol and Antiperspirant are pumpers’ new best friends.

Summer often means swimming and swimming can mean chlorine. Chlorine can bring extra headaches for people with diabetes using an insulin pump in the summer. Personally,  the only way for us  to keep sites on in chlorine was by making sure that a product  like Fernandale Mastisol Liquid Adhesive was used on the skin prior to set insertion.

For people using an insulin pump and/or a CGM, you may also want to look at using an antiperspirant on the site.  Apply a light coat of antiperspirant (not deodorant) to the insertion site area.  This will help to keep sites in place when your body begins to sweat!

Have snacks everywhere.

Summer heat can bring its own challenges for managing diabetes. It tends to mean more exertion and rapidly dropping blood glucose levels.  Make sure to carry extra snack foods with you wherever you go.  One parent suggests that you stock up on Freezies.  They are perfect treats for lows and also help ward off dehydration.  Other families have suggested fruit and frozen grapes as must have snacks for on the go.

Drink lots of water.

Dehydration is a real problem in the heat.  It is especially important for people living with diabetes to stay hydrated because dehydration will cause blood glucose levels to spike.

Test often.

Heat, exhaustion and the fun of the sun can really mess with blood glucose levels so make sure that you test often to avoid any serious diabetes related emergencies.

Bring extras!

As I have said, infusion sets can fall out.  Blood sugar levels can go crazy.  It is vital that you carry extras of everything–extra snacks, extra water, extra test strips, extra insulin and extra infusion sets just in case.

Wear sunscreen.

I know, everyone is supposed to wear sunscreen so really is this a diabetes issue? Well no…and yes! It turns out that sunburns have been known to really mess with blood glucose levels.  The moral of the story? Stay hydrated and wear sunscreen to help keep blood glucose levels in check.

Have fun!

Finally, in Canada especially, we just don’t seem to see summer for long enough so plan ahead and enjoy all that this summer has to offer you and your family!

*please note that affiliate links have been used in this post.  While these links do not direct to the only places to purchase the highlight products, purchasing from the links does support the work of Diabetes Advocacy

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.

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