Tag Archives: diabetes care

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.

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.

Which Liberal Government?

The summer is over and it’s now time to get back to work.

This summer I saw a number of variations of this status posted all over Facebook…

“I would like to highlight the Liberal government removing the subsidy for blood test strips. Diabetics need very frequent blood testing, up to 5+ times a day. The cost of strips is $70.00 – outcome – reduced blood glucose testing and more hospital admissions from hyper or hypo glycemic episodes.
Diabetes . . . I am asking if everyone could put this as their status for 1 hour. I’m pretty sure I know the ones that will. Think of someone you know or love who has or has had diabetes. My hope is that in 2016 a cure will be found. Will you post it for 1 hour? To honor those who have fought or are fighting diabetes.? “

Many people were sharing this status.  Many more were asking…where is this from? Whose government is doing this? The answers were surprising.

liberalsI was certain that it was Newfoundland.  This spring the new Liberal government  announced changes to the provincial prescription drug plan.  They were limiting the number of test strips to 2500 annually for those using MDI, 700 for those using just a long acting insulin, 100 for those not using insulin and 50 for those who have only recently been diagnosed with Type 2 diabetes.*

As this post continued to make its rounds however, I was shocked to see that a number of other locations were also claiming that this was a reality in their home area. People from as far away as Australia were saying that this had happened to them.  They said it was their government that the post was directed at.  All I could think was, “this is crazy!”

For years, study after study has shown how important tight control and home blood glucose monitoring is.  They have shown that good control equates to improved health outcomes AND immediate financial benefit in terms of reduced loss of work. Why would governments think that they were saving money by cutting access to blood glucose testing strips?

This entire scenario hits too close to home as my son turns 19. He may soon be in a position of losing his health care coverage.  His days of being covered by his father’s private health care plan are numbered.   My stomach aches each time I think of this safety net being taken away.  He does have some coverage from the province.  We will find a way but what about other children?

I don’t mean small children, I mean adults who are struggling to find their way.  What about them? What about their families? How do they cope? How do you work a minimum wage job, pay your rent, buy your groceries AND cover your diabetes care costs?

Again, we know how important blood glucose testing is. As parents, we have spent years asking  our children “Did you test?” and “What was your blood glucose reading?”  How do they answer those questions when they can’t afford the test strips? How accurate will their guess have to be?

Without proper testing, they cannot accurately dose their insulin. They cannot make exact judgement calls on corrections.  They will run a high risk of complications.  They most likely will have more sick days.  This will cost governments more money in lost tax revenue and create an increased drain on hospital services.

If a person with diabetes is unable to test and stop potentially dangerous high blood glucose levels on their own, they will be forced to seek hospital treatments.  A 2008 report in the Toronto Star suggests that one typical hospital stay then cost approximately $7000**.  $7000…you can get 100 strips for $80-$100.  If you test 8-10 times per day that one hospital stay would still  cost more than 2 years worth of test strips. Two years. 

It would appear that the people in charge of making these policy changes need to better understand what they have done.  Basic math shows the folly in such policies. We can only hope that public pressure and common sense will ultimately prevail.  Our loved ones with diabetes need access to the proper medical supplies to ensure that they can continue to be healthy, productive members of our societies.

*http://www.thetelegram.com/News/Local/2016-04-17/article-4500650/Changes-coming-to-provincial-drug-program/1

**https://www.thestar.com/news/canada/2008/03/18/average_hospital_stay_costs_nearly_7000_study.html

 

He’s Got This

Over Easter, my youngest son came to visit.  Each time he visits me I am shocked by how much he has grown. My little boy is long gone and a young man is emerging. A child with diabetes is being replaced by a young person with diabetes and I stand in awe.

This time I stood back a bit more. I tried not to fall into old habits of taking over care or nagging about testing. I gently reminded. I compared carb counts now and again when asked.  I tested him at night at his request but mostly I sat and watched.

I wondered how his care was going. He hasn’t told me an A1c in years. I worried about his rates. I worried about his health.  The more I tested, the more I watched, the more my pride grew.

He wasn’t perfect.  He still doesn’t test as much as I would like but when he did test, his results were awesome. When he ate junk, which he doesn’t do as much any more, he nailed the bolus.  When he spiked because of a low cartridge and air being delivered instead of insulin, the spike was no longer in the 20s (360+) it hovered in the low teens.

I sat back and realized that he’s got this.  All of those years of preaching, teaching and sharing have paid off.  He is taking care of himself.  He is trying to protect his body from itself and doing a good job.

In a recent conversation I reminded him that he is the expert in his care.  It is his job to ensure that he is able to demonstrate that to medical professionals that he sees.  He should listen to them and be willing to accept their help but he may also have to remind them that he has been doing this all of his life.  He has been privileged to be trained by some of the very best people in diabetes care in the world.  He has a very good handle on things and a huge support network to reach out to when he is in doubt.

He explained that he finds that very frustrating.  He doesn’t want to get into a contest of who knows more when he sees someone but he feels that after all of these years he does know his body.  He is very healthy.  He has got this…and he has!

hes-got-this-poster2

I am dead tired…and feeling guilty

I am worn out, dragged out, dead tired…after just two nights.

I am out of practice.

I want a CGM.

I want a cure.

I feel guilty. I can’t wait to get my sleep back again.

My son came to visit for a few days.  It was the best Easter gift…having both of my boys here with my for Easter dinner! I was over the moon.

Diabetes had to tag along for the ride.  It could have stayed behind.  It played better than it has on some visits however.

I was pleasantly surprised when I got up to test my youngest son on the first night.  He was a perfect 5 (90).  I didn’t sleep. He was perfect. Exactly in range.  What was next? Would he rise? Would he go low? I didn’t sleep. I rested now and then. I checked.  He dropped a bit. Not enough to worry about. I tried to sleep. I worried.

The next night we had the opposite problem.  His cartridge had run low.  His blood glucose went up.  It didn’t go up as high as it had on previous visits.  He is even more fixated on his health and improving his control on his own.  He corrected. He had command of this.

Once again I awoke during the night. I went to his room and tested.  He was high still. He corrected.  I went back to bed.  I wondered if he would drop. I wondered if he would go higher.  I worried. I tried to sleep but I worried.

Tonight he will be in charge of his own care again.He will be the one to wake.  I will wake up just like I have for too many years.  I will wonder what his readings are but I will be able to  roll over and go back to sleep. I won’t be kept awake with a low. I won’t wonder which direction a high will take even with a correction. I will simply roll over and try to sleep…but I will feel guilty because I can just roll over.

I put in my time. I had 16 plus years of sleepless nights between babies and diabetes.  My son has had 16 years of diabetes too.He doesn’t get an end.  As I said, he has become very conscious of his health and his body.  He told me that he already has one faulty organ, so he has to make sure that he doesn’t have any more.

He is growing up.  He is a young adult now. He takes most  things in stride.  I still wish that he could have an end to testing, injecting, carb counting, lows, highs and all of the rest.  Wishing doesn’t make it so. Feeling guilty doesn’t change allow us to change places.  This is just the way it is.   I will keep wishing for that day when I can say “that was the way it was.”

tired

Save today and save more tomorrow

In Canada the economy is in a mess. All levels of government seem to have an incredible debt load. They are constantly in the media looking for ways to save money. They are asking people where they feel that they can make cuts.

I have also been reading posts about adults with diabetes who are having to pay for their own syringes and strips. There are stories of young adults asking why they are paying for needles that keep them alive when drug addicts are getting needles to keep them high for free. There are conversations about seniors who have no coverage at all or are given one box of test strips to cover them for an entire year. My heart breaks for these people. I am terrified for their health. I seriously wonder what governments have been thinking for all of these years.

I have been at this diabetes advocacy thing for many, many years now. Back when I was first gathering information on the cost of insulin pump therapy versus the savings, I learned about the high cost of complications. I quickly understood however, that the government of now is not interested in the worries of the government of tomorrow. They were not interested in paying for pumps and quality care today to save on dialysis tomorrow. They wanted to not pay for dialysis today. This shortsightedness has led us to where we are today.

I am not sure what the cost of a hospital stay is currently but the Toronto Star put it at $7000 per visit in 2008.

According to Diabetes Depot, for $7000 you can purchase…

  • 61 5x3mL cartridges of Lantus
  • 50 5x3ml cartridges of Levemir
  • 206 10ml vials of Novorapid
  • 215 10ml vials of Humalog
  • boxes of 100 Lifescan glucometer strips
  • 184 boxes of 100 per box BD Ultrafine II Insulin Syringes 1/2cc 30 gauge
  • 116 boxes of Animas insulin cartridges
  • 37 boxes of Paradigm Quick-set infusion sets
  • 22boxes of 5 per box Enlite Glucose sensors
  • One insulin pump (which is guaranteed for 4-5 year)

So for every time a person with diabetes goes to the hospital–and my old research said that on average a person with diabetes may go into the hospital for an emergency three times per year if they were not well-managed, the government could have bought them syringes, or insulin, or strips, or all of the above and saved money.

If a person was hospitalized TWICE per year, based on my calculation last year, the government could have paid for a sensor augmented pump AND all of its supplies for the year for the same amount.

Sadly provinces are not covering sensor augmented pumps.  Many provinces are not covering pumps for adults.  There are provinces not covering insulin, syringes or test strips for people living with diabetes.  That worries me greatly.

It worries me that people are not able to properly take care of themselves.  It worries me that governments are looking for ways to cut costs without looking at the bigger picture.  I have sat at pre-budget consultation tables.  I have asked and have heard others ask for governments to invest in keeping people healthy today so that we don’t have to pay much larger bills tomorrow.

I don’t know when they will truly begin to listen.  I will continue to suggest as I know many others of you will as well, that they look at preventative measures over short term cuts.  In the meantime, I will be saddened and worried for those who struggle to afford proper medical care and treatment.  I will also be motivated by them as well.

Together we will one day see real change for all of our sakes.

diabetes supplies

 

The Transition Year Troubles

Last week it was  rough being a mother of a young man with diabetes.  My son wasn’t in DKA or anything as horrible as that.  He was tripping up in the world of paperwork, bureaucracy and diabetes care.

Two years ago he decided that he was old enough to handle his diabetes care, appointments and schooling on his own. He chose to move to live with his father and take over the responsibility on all of those fronts.  I was forced to stand on the sidelines and offer advice now and again when asked.

I was also left to order supplies for his pump on a semi-regular basis and this is where the trouble began…

I had placed an order for his infusion sets and cartridges.  On Tuesday I received a message on my phone.  It stated that coverage for my son’s supplies had been refused.  I was to either pay the almost $800 bill immediately or return all supplies.

What the heck? My son was under 25 with no insurance.  The provincial pump program was supposed to cover him. Had he fallen through the cracks? Did someone forget to do his paperwork?

I immediately began making calls and sending out emails.  I was sent a copy of the forms that should have been completed for him.  I called the woman at the pump company back.   Slowly the truth began to emerge and it wasn’t pretty…

The pump company hadn’t received new paperwork for my son regarding provincial pump coverage since 2014.

His diabetes center had only seen him once per year but the provincial policy requires him to see someone three times per year.  He had missed most of his appointments.  They had warned him that doing so would result in lost coverage.  He never paid attention.

His diabetes center was for pediatric care and they believed that he had been transferred to an adult center.  They suggested that I contact his former doctor (whom my son felt was still handling his care).

I called his doctor.  I was desperate for some sort of help both in getting my son to realize how important his attendance at appointments were and finding coverage for his pump supplies.

His doctor would not take my call but did say that he was continuing to care for my son.  Because my son is 18, his doctor felt that it was up to him to fix the mess that he created.  Fair point.  I passed the message along.  My son made the call.

It is a new week.  A glass or two of wine helped me to decompress.  My son is hopefully beginning to understand that while Mom is always there to help, being “of age” means that he has to handle things.

He has a call into his doctor to set up an appointment and chat about what he can do next.  His doctor is willing to help him get things straightened out (him not Mom) . He has booked an appointment with a diabetes clinic closer to his home to ensure that he can make the appointment.

These sound like small things.  In our world they are massive but we will find out way through…and at least there is still wine.

wine

 

 

Saddle Sores

 

My sons came to visit for a weekend over the Christmas holidays.  The visit was short but very much appreciated. It took a minute or two to get back into the hang of having diabetes in our house.  Sadly however, we quickly fell into the routine of…

“Did you test before eating that?”

“How much did you bolus?”

“How many carbs do you think are in those candies?”

My children are now young adults and while I always said that I would test my youngest son any time he was in my house, I also try to respect his privacy.  This means that when he is here, I ask him ahead of time if he wants me to test him at night.  The answer is always the same…YES!

This time around I thought of my mom as I struggled to test at night.  My mom had taken my children at certain times when they were growing up.  As long as I gave her carb counts and a testing schedule, she was good to go!  After the fact she would regale me with tales of sweat trying to get blood out of my son’s fingers at 3am.

Now it was my turn.  The meter had changed.  We were finally getting around to trying out his new Dario.  The pump was one that I had never used except during vacations.  I was a newbie…and it showed!

I struggled to get blood.  The Dario has no back light so it was a challenge to see if the blood was actually hitting the right part of the test strip.  I had the strip in backwards. I still didn’t have enough blood.  And so the fight continued.  My son woke up more than once during these “helpful” nighttime sessions.

I had to figure out how to correct with the “new” pump.  I can correct on a Cozmo in my sleep.  This pump is not a Cozmo.  After I was shown by a sleepy young man how to bolus a correction it made sense but as I was scrolling through the pump screens at 4am, there were some not nice words being said!

I don’t know if I was a lot of help to my son.  I don’t know if he got a break but for three days there was someone else to bounce numbers off of.  For three days there was someone else to be up during the night.  I know he appreciated it but being back in the diabetes saddle definitely gets a bit more challenging with time!

Not so funny after all

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

parody jealous

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

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

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

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

I am ready for a cure.

 

 

MyDario…A new toy!

Dario diabetes management tool
Dario diabetes management tool

A month or so ago, I came across this really interesting looking meter.  I sent my son the link and asked “what do you think?”  His response was, “I need one. You should get me one.”

I laughed. I don’t exactly have the power to get him every new meter that comes out as easily as I once did.  Back in our earlier years of diabetes management, glucometers were pretty basic.  Asking a rep for a new meter was not a big deal because they wanted your test strip business.  Today many meters are now small computers.  They analyze trends and do all sorts of tricks.  This means that they cost a lot more money than they once did.

Cost or not, a new meter in our little world of diabetes has always been a big deal. Needless to say, I was really excited when I received the press release from Auto Control Medical stating that they were launching the meter that we had looked at!  Auto Control was the distributor for many great diabetes tools like the Cozmo insulin pump and the Cleo infusion set. It was therefore not surprising to see them involved with another cool innovation.

After a few emails, I was able to set up a time to chat with a representative from Auto Control  and get the details on this new toy  glucometer.

According to the press release, “the Dario Diabetes Management Solution is a compact all-in-one system that helps people with diabetes monitor blood sugar levels and proactively manage their disease using their smartphone or tablet…Approved by Health Canada, Dario connects via headphone jack to turn a mobile device into a glucose monitor, and comes equipped with a lancing device and test strips to take blood samples on the spot. It provides the diabetes patient’s real-time and historical blood glucose data to spot patterns, recommend treatments and support behavior changes. Its web interface also makes it easy to get upgrades and share health information with healthcare providers and loved ones.

As an all-in-one system, Dario combines a lancing device to obtain a blood sample, a proprietary disposable test strip cartridge with 25 strips, and a glucose meter that’s driven via the user’s mobile device. Unlike conventional glucose monitors, there is no carrying case or batteries to replace, and the system works on both Apple and Android devices.” You can see why I was excited about this new technology!

Compact system with meter, lancing device and  strips all in one spot
Compact system with meter, lancing device and strips all in one spot

After speaking with the Auto Control representative, my enthusiasm didn’t wane.  Not only was this meter compact, like my son’s beloved iBgStar, but it would not become obsolete or require me to search high and low for new adapters when he upgraded his cellphone.  Dario’s patented technology allows the user to plug the meter into the phone jack and you are good to go!

The Dario offers data sharing (great for nosy parents like me!) and is extremely feature rich according to Auto Control.  I was told that app updates will make this meter much more customizable than the competition. By updating software through apps, the meter should also have more longevity and not become obsolete before you have finished the first 100 test strips.  I haven’t had a chance yet to download the myDario apps yet but I was told that users are free to download and play even before purchasing the meter.

Yes, you do have to purchase the meter but again, the meter is less than some comparable products.  The current retail price is $39.95 but some short-term offerings are being made to help reduce the cost.  Please check with your pharmacy or www.mydario.ca for the exact details.

The Dario diabetes management tool has a meter, lancing device and 25 strip container in one small location. It uploads to most smartphones and offers detailed carb counting applications similar to those found on some smart insulin pumps. It has a standard warranty program and offers replacements on a case by case basis.   The meter and test strips are covered by most private insurance companies and will be added to provincial formularies in the coming months.

The next step for us will be to test it out in the real world.  My son got his wish and will be having a Dario delivered to him in the coming weeks.  I have told him that I want a full review from him on what he thinks about this new meter.  I will also be downloading the app from the MyDario site and seeing what I think of things from that end.  I love new diabetes toys!