Tag Archives: diabetes care

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!

 

 

 

My Favourite Blog Post?

 

Today’s Diabetes Blog Week prompt asks for my favourite of those that I have written.  Seriously? That is a challenge!! First, I don’t write thinking,” Wow, I am awesome!”  I used to write thinking that no one would ever read what I had to say.

As I realized that they did, I just wanted to post things so that other parents would know that they were not alone. I tried to find humour in some of those events.

I have written posts that have come from my own struggles and guilt as a parent of a child with diabetes.  The post written after my son told me that he wanted to move back with his father for his final two years of high school was definitely one of the hardest to write. Trying to find a balance of honestly, emotion and not sounding as lost as I felt was a huge challenge. The positive comments made me feel better for sharing.

I have tackled topics that many of us want to ignore like Dead in Bed but lately I have tried to educate through posts like my most recent Dear John and Jane Public and looking at the cost of diabetes care if it were me and not my son with the disease.

What is my absolute favourite? What makes me smile? Any post that shows my son’s great attitude and quirky sense of humour.  There have been many comments over the years that have come out of nowhere. Some of them I have caught and  published like when he told me…”“You know Mom, if I had to explain to someone what it felt like to be high or low all I would have to do is tell them to watch Suzie and Sweedums eat breakfast.  Suzie is what its like to be low and Sweedums is what its like to be high.” Suzie will  demolish a bowl of food before I have put food in Sweedums’ bowl.  Sweedums will eat one piece of food at a time, analyzing it and taking over to a mat to eat every single morsel.

The one post that will make me smile every time is when I described my son’s logic when it came to site changes. He was a day late doing his site change.  I was leaving him to it when he stopped me asking me why I was leaving?  When I told him that he was more than capable of doing a site change he replied…

“Yes, but Mom, you realize that you only have four more years to do site changes for me. I will turn 18 and move on and you will never have this opportunity again.  You should be savouring these times just like you say how important it is to share each birthday with me before I leave home. Actually, think of these site changes as being just like my birthday but every three days.  Treasure them. In fact, we can make it like my birthday if you want. You can even buy me presents for each site change done!”

Ironically, he is right about me missing it that is. I still get to do site changes when he visits. I don’t miss diabetes or harping on him to do a site change but since it is a part of him and I miss him, well I do kind of treasure those times when I did do his changes.

 

The post just once again showed his unique perspective that some days makes me want to bang my head against a wall but most days makes me smile and proudly say “Yes, that is my son!”Celebrate

 

 

Swept away and retired to a desk

Today’s prompt for Diabetes Blog Week asks what is that one thing that we are still clinging on to that we need to let go? What in our diabetes closet needs to be cleaned out?

Honestly, I was going to use a wildcard for this one. I thought it didn’t apply to me any longer.  Diabetes does not live with my full time any more so what could I possibly need to junk out? We cleaned out most of my son’s diabetes supplies when he moved.  Anything left here he needs when he visits. Obviously this was a topic that I was going to have to give a miss. Or maybe not….

sweeping up
Sweeping out the old

There is something that I have been working on for…cough, cough, almost….two…cough…years.  It is something that I need to let go of, clean out, sweep away. My challenge is to sweep away that need to know all and me hands on 100% of the time.  It is now physically impossible and thinking otherwise is emotionally draining.

I have to adjust to the role of no longer being that person in charge. Learning my new role as the person standing in the office listening to what is going on in the trenches but removed from the actual events is a huge challenge.

I no longer have to wake up at various times during the night to test my son. That has its own guilt.  I still wake up through the night out of habit but as time has gone on, I no longer wake in a panic wondering if he is okay and if he is testing.

I have gotten better at having him text me readings.  Originally I wanted to know every reading.  I would stay up to all hours just so that we could talk and he could tell me what his readings had been like.  That didn’t work. He did his best to be busy when I wanted to call and talk.  I had to get rid of that need to know. I had to learn that it was now truly his disease.

We still talk daily.  I don’t know his readings from day to day.  He calls me when he has a problem. We troubleshoot issues together.  I still work on being okay with the fact that I don’t know his A1c.  I still struggle with not being able to hook him up to the technology that I want him to use.  Sweeping out the DMomma who is hands on and replacing her with the DMomma who is just there to help out when things get a little messy or he needs a break has truly been my biggest challenge.

As I have have been swept out of the trenches, I found myself struggling to understand my place on the sidelines.  I worried that I had not prepared him enough. I worried that I would not matter any more. I worried that I would no longer have a role in that community of diabetes parents that had been my home for so many years.

Just like cleaning our house can give you a new perspective, cleaning out my role as a DMomma did as well.  I have seen my son thrive on his own. I have seen him put to use what he has been taught and develop his own confidence.  Standing back has allowed me a new role in the diabetes community and in my son’s life…and its not that bad!