Category Archives: insulin pump therapy.

Mom! It looks like I’ve Been Shot…Again

In honor of Throwback Thursday, here is a humorous post from May 4th, 2010. Enjoy!

Last night I wrestled my son to the ground and later heard about the consequences. You see said child, admitted that no he hadn’t been spending his time mulling over the perfect gifts to purchase for his devoted mother for either Mother’s Day or her birthday.  In some countries I am sure his actions would have constituted a hanging offense but in our house in meant that I tackled him, interrupted his Wii game, pinned him down and tickled him.  Thankfully I still have a few pounds and an inch or two on him so I can still win. 


The downside to this fun when you have a child on an insulin pump who wears sites in his leg is obvious to those of us who live there.  After the screams of “I’ve gotta pee!!!!”, came the grumblings of “You pulled out my site!”.  With the cost of pump supplies being covered for us, it felt good to say “Well, just go and change it.”  Once upon a time, I would have cried at the $20+ that I had just wasted even if it was in the name of fun. 


Being a teen, my son was in no rush to change the site and Mom had visions of highs for the rest of the evening.  The longer he waited, the less insulin he would get, the higher his bg levels would climb I was sure.  Again, being a teen and being my son, he stated that the site was salvageable and he had simply taped it in place.  I was worried.  Was the site really still in? Yes he assured me as he headed off to the shower.  His grumbling about being bested by his mother had been replaced by the comment that if Mom could wrestle him then wrestling with his brother should once again be allowed (It was discontinued after brother’s elbow met son’s eye and left a nasty shiner).  I attempted to burst his bubble but he still was quite proud of his logic as he headed off for his marathon shower. 


Once he undressed he proclaimed “Mom, I look like I have been shot!”  What did that mean? He told me that there was blood all over his leg.  I said that was it, the site was gone! He had to change it.  He proceeded to shower and I never got to really check out the damage.  He kindly left the dead and bloodied site in the shower for me though.  Ironically he was disgusted when he found it on top of an envelope later.  I had taken a picture and left it for him. He told me that the site should be in the garbage! Um, who left it in the shower to start with? Oy!

Age Shouldn’t Matter

Last week, during blog week, I told you about things that get my dander up and make me want to scream from the roof tops until they are fixed. One of those things was access to insulin pumps and supplies. Since the day that I realized that there were more options available to my son than the insulin regimen we were currently on, I was adamant that all people with diabetes should have choice in their treatment options.

People living with diabetes should be able to decide if they want to use Lantus over NPH. They should be able to choose Apirdra over regular insulin.  They should be able to see if a Continuous Glucose Monitor or an insulin pump is for them without having to sell their home. That sounds extreme doesn’t it? Sadly it isn’t.  Despite living in Canada with its socialized medicine, Canadians are still not always able to access the best treatment options for them.  They may not have private health insurance or their insurance may not cover the devices that they desire to use.  The result is that they go without or go to extreme measures to get the medical tools that they desire to keep them healthy. For me, that is not acceptable.

My son began using an insulin pump 11 years ago.  I had wanted a pump for him since the first time I heard of the flexibility that it allowed but financially it was not an option.  His father had medical insurance but insulin pumps were not covered. What changed 11 years ago? My family stepped in and said that they would come together to pay for the pump.  They wanted the very best for my son.  It is a moment that I will never forget.

Over time things have changed thankfully. Provinces have begun to cover insulin pumps–for children.  Those over 18 have had to find good insurance, high paying jobs, go back to injections out of necessity rather than choice or move to Ontario (the first province to cover all people with Type 1 diabetes who wished to use insulin pump therapy).  In my own province of Newfoundland and Labrador, changes have been made as well, the age limit for assistance was moved to 25.

Today my son is 16.  He is heading into his final year of high school and looking at career options. The most important part of his career choice is to find one that is either very high paying or offers great benefits. What he enjoys seems to be second on our list. That is discouraging and gets my dander up.

If a person wishes to use an insulin pump to best control their diabetes care, then they should have that option.  Age, financial status, or occupation should not dictate what type of therapy they can receive.  With this in mind, advocates in provinces like British Columbia have created petitions to ask their government to expand coverage and remove age restrictions. Pensioners are having to go back to injections because their private health care coverage ends at retirement.  Young adults who are beginning careers and new families are having to rethink how they will move forward because of cost constraints brought on by managing their diabetes care
.
This is not right.  Age should not dictate whether you get an insulin pump or not.  Insulin pumps provide just as many benefits to adults as it does to children.  Adults with type 1 diabetes who are using insulin pumps often find shift work much more manageable.  They tend to see less diabetes related down time because they can micro manage their disease with greater ease.  The addition of Continuous Glucose Monitoring systems to their care can help them to anticipate dangerous highs or lows that could have otherwise sent them home for the day.  Increased productivity and work time for people with diabetes has a larger impact on society as well. People living with diabetes who are able to work are able to contribute to the provincial tax coffers through their employable earnings.  They are less likely to have complications or dangerous blood glucose swings that could send them to the hospital.  Our young people with diabetes are able to look at jobs in the province rather than having to move to areas with better pay and better benefits.

The rewards definitely outweigh the costs to the provincial governments and our health care systems. With this in mind, I have created a petition that will ultimately be presented to the government of Newfoundland and Labrador asking that they expand their insulin pump program.

Please consider signing and sharing this petition.  The more voices we have, the stronger we are.  This is a very serious and real issue.  The stories and needs behind the petition are heart breaking.  I have spoken to a government employee who have had to rent out her homes so that she can have extra money to be able to afford her diabetes supplies.  I have listened to medical personnel who have had to rely on financial help from a life partner in order to continue pumping.  I have sat down with members of the police services who pay the equivalent of an extra car payment each month just to keep themselves pumping and healthy.  There are also people who are in minimum wage jobs who have no choice but return to injections after they turn 25 because they just can’t afford to pay for their rent and their insulin pump.

This needs to change. With your help it will. Please support this initiative for all of those who choose to use an insulin pump.
NL pump petition

Three Things that Raise My Dander

Diabetes Blog Week
Its Diabetes Blog week once again and I am so excited to be able to participate once again!  Today’s topic comes for Kim of Texting my Pancreas and asks us to discuss diabetes issues that get us really fired up!

Since I began my website many years ago, the issues that I have been passionate about have grown but have always retained one common thread–improving the lives of people living with diabetes.  There have been some successes and there is still a long way to go but watching the diabetes community come together and create change has been the best part of the journey.

The first issue that got my dander up was the inequity I saw years ago in the way people with diabetes were treated when it came to the Disability Tax Credit.  As I worked on this issue, I saw that those who were approved for the credit were people who were able to stand up to the government and were willing to fight for this issue. If you were uncertain or did not know how to take on this battle, you would be denied the credit while your neighbor was approved.  There seemed to be no other logic behind how this credit was applied to people living with diabetes.
With a lot of help from other people living with diabetes and a fabulous mentor, I was able to see this issue change dramatically. Fairness was obtained and change happened to the legislation surrounding this issue. I was very proud of all the works that was done here but there were still more issues to tackle.

As I learned about diabetes and became more involved in the world of advocacy, I came to realize how difficult it was to get an insulin pump if you didn’t have the very best insurance coverage.  Once again I was outraged.  Why should it matter what sort of job you have or where you work to get the best possible care for your diabetes?

Since I first began dealing with this issue, things have changed.  Most provinces in Canada now offer provincial health care coverage for insulin pumps and supplies for all children under the age of 18.  That was great but what about older children who are just starting out in the workforce? Some provinces decided to give these young adults until age 25 to get better insurance…some provinces didn’t.  Today, I continue to work with others to see that all people living with diabetes have access to the best devices available to manage their diabetes care regardless of age. This means that I would like all governments to cover insulin pumps, supplies and Continuous Glucose Monitors for people with diabetes regardless of age.  This will happen in time. I am confident.

No matter what your age or where you live, you deserve access to the very best in medical care.  It is important for governments (and insurance companies) to understand the broad sweeping benefits that come from best care practices. If a person with diabetes is able to maintain their bg control to a close to normal range and they are able to anticipate highs and lows with the aid of CGM technology they are better able to perform at work (which means less down time and more money paid to the government in terms of personal tax), they are less likely to be in the hospital (costing the government money), and more likely to have a better overall life satisfaction which in turn further leads to increased productivity and once again an increase in taxes paid to governments. The cost outlay is far outweighed by the benefits to the system as a whole.

At the moment, I live in a province that covers insulin pumps for people with Type 1 diabetes until they reach the age of 25. It does not cover CGM technology.  I have less than 9 years to advocate for increased funding to cover all people with diabetes regardless of age.  In 9 years my own son will be in the position of having to make very serious and real choices about his diabetes care. We will see this change–for him and for all of the other adults struggling to maintain their health despite the heavy financial costs.

Because my son is still in school and has had diabetes since before he went to school, the third issue that I am passionate about is that of children with diabetes in schools. This issue has seen major changes since I first began talking about it over 10 years ago.  In BC, we have seen the power of grassroots parent organizations who have pressured the government into changing its policy on children with diabetes in schools.  I have seen many more individual boards and provinces begin to seriously look at the issue of protecting the rights of children with diabetes in schools.

Once again, this is an issue that many parents and children are not able to stand up and voice their concerns about themselves. I felt that it was therefore my job to help them.  I would (and do) speak to parents on how best to tackle their schools and their issues. I work with boards to help them understand what needs to be done to create change that is fair and just to all parties involved. This is a very complex issue here in Canada. Our children are not protected by a disabilities act. They are protected by the voices of their parents and other concerned adults…but these voices are powerful and making a difference.

Advocacy has always been something that I am very passionate about. I have felt a strong need to stand up for those who may not be able to stand up for themselves.  I have worked for the past 14 years to ensure that people living with diabetes are all treated fairly with equal access to education, medical devices and supplies.  This is a long road.  It has seen many battles won and I am proud to be able to continue fighting the war along side many incredible people.

change2

BC Takes Another Step Forward

Last night I returned from an evening out to see all sorts of posts about an announcement from the BC government.  They have decided to expand their insulin pump program to include young adults up to age 25.  This is fabulous news! No longer will young adults entering the workforce have to turn off their pumps at age 18.
 
This is not however the final battle in this war however.  There are still people over 25 who desperately need the help of their provincial medical plan to cover their insulin pump expenses. This is a fight that we will all continue until everyone living with diabetes in Canada  who require an insulin pump but cannot afford to pay for one, will have access to one.
 
In BC, the driving force behind the recent change is not happy to sit and savor this latest victory.  She is asking that people in British Columbia “please write the Hon. Minister Terry Lake and tell him that funding insulin pumps up to age 25 is NOT GOOD ENOUGH. I am begging all of my friends from BC to even just write a short email saying that we need pump funding for all ages of people living with TYPE ONE DIABETES with no age restrictions for people without extended health benefits to pay for them. It could be your family member that is in need of this life saving device. He needs to know that this is unacceptable. Please send it to terry.lake.mla@leg.bc.ca and carbon copy to  hlth.health@gov.bc.cajudy.darcy.mla@leg.bc.ca (NDP health critic), your MLA and the premier premier@gov.bc.ca .”
 
Congratulations to BC advocates for getting to this point!  Good luck to advocates across Canada who seek to have their provinces follow the example of the Ontario government and fund ALL insulin pumps for people living with diabetes.  This is a moment to savor…and then move forward in a war that we will win for everyone with diabetes in Canada who wishes to use an insulin pump.
bc expands coverage
 
 
 
 
 
Details of insulin pump coverage by province can be found at http://diabetesadvocacy.com/pump_coverage.htm

Go Ahead and Complain

The other week I noticed nothing but customer service complaints filling my Facebook news feed. I was shocked and wondered if there was something in the wind.  It didn’t matter if someone was in a restaurant or dealing with their cell phone, they were having issues with horrific customer service. Sadly, this made me feel better when I began to have my own issues.

My son’s glucometer was having issues. It was eating batteries with astonishing speed. It had reached a point where he was no longer using it much to my dismay.  This is the meter that “talks” to his pump and gives me a true idea of his bg levels each week when we review things.

I called the customer support number and so began my run around. It appears, in a review of my situation later, that every crack that I could fall through I did! It was terribly frustrating but it also reminded me of a few things.

First is how important our pharmaceutical reps can be when we have problems.  After asking around and finding out that the service I was receiving was extremely unusual, I contacted my rep to see if she could be of any assistance.  She was horrified!  She apologized and was instantly looking for any and all help that she could get for me.  She did not stop until things were resolved.  I loved this lady before she became my son’s pump rep and now I truly love how she goes above and beyond for her customers.

Secondly was how those annoying spiels about how they are recording your conversations actually have a benefit to the customer. If you know exactly when you called and you feel that you were not treated properly, management can pull up the call and see what has happened.  In my case, I was treated fine, my issue just got lost in many transitions.  I have however received horrible service from a person on the phone with a different glucometer years ago.  The woman told me that the problem with my meter’s accuracy was related to me having dirty towels that my son was drying his hands on.  To say I was insulted was an understatement.  Later follow-up resolved that issue and the woman was re-educated.

Customer service is huge for those of us who’s lives, or children’s lives, depend on medical equipment.  Personally, I have met many people in the industry from all over North America.  They all genuinely want to help.  “Stuff” does happen.  Mistakes can be made but I have also learned that these same companies want to learn from their mistakes.  Let your reps know if you have issues.  They want to fix things for you. They want you to be healthy and satisfied with their products. That’s good for everyone.
complaints

The Changing of the Pump

We finally did it…and it hurt. After 10 years of using a Cozmo insulin pump, and almost a year of no warranty, my son got a new insulin pump.
I was warned years ago that when we changed from Cozmo, we were best to simply forget that we ever owned a Cozmo. I was told to go forward as if this new pump was the very first one you had ever used. That was the only way to avoid the grief and pain that came with change. Boy were they right!
The change itself was beyond painless. I knew the pump that my son was okay with (if he had to retire his Cozmo).  The only issue was the color.  I contacted my Animas rep and in literally a matter of days, she had the pump ordered and was in our kitchen to do all of the training. Karyn is beyond amazing!
As we went through the features of his Ping versus the features we had on our Cozmo, Karyn was just as sad as we were to be switching pumps. She told us that she wanted some of those features on her pump! Kindly, another Animas employee asked that I send her a list of some of the features we were missing in hopes of one day being able to secure them for use in an Animas pump.  Did I mention that this company really has great people working for them?
The Ping doesn’t automatically switch basals from weekday to weekend. It doesn’t remind my son when to change his sites. It also doesn’t allow you to preset personalized temporary basal rates or do all of your pump changes on your computer and beam it back to your pump. It does have a remote that speaks to the pump.  Granted we had a Cozmonitor that did that too but we haven’t used it in years and it was attached to the back of the pump.  The Ping remote is a handheld devise that allows me to test my son at night, and do a correction without searching under the covers for his pump.
The Ping also allows him to upload his pump to a website and then Mom can “see” all of his bg tests as well as pump issues and basal rates.  This was a great comfort for reasons I will discuss in another post.
We are now about three weeks into pumping with the Ping.  There have been real glitches. We have both accidentally stopped boluses.  He has somehow suspended a basal rate.  He has failed to put a cartridge in properly and had issues but we will get there. This is still a good pump. It has a warranty if we have problems. We have great support and did I mention that its now under warranty?ping

Phil, the SUPER COOL Animas Penguin

In honor of Wordless Wednesday, meet Phil the SUPER COOL Animas Penguin. He was way too cute not to bring home from this summer’s FFL Canada Conference

(And his belly is made to practice inserting infusion sets) 

It will be my wife’s job

“You need to do a site change.” 

My son replied, “I can’t do it by myself. Its in my arm. I can only do leg sites.”  

I asked him when this happened. He used to do almost all of site changes except the one arm that he couldn’t reach.  “What are you going to do when you leave home?”

“You are going to have to come over to where I am living and do it for me.  Not to worry though, I will stretch my site changes out to every four days to give you a bit of a break.”  He paused for a second thinking,”It will be a bit tougher though if I have to move away for work.  You will have to fly out to where ever I am.  I can’t afford to pay your travel though because I will need my entire pay cheque. I am sure you can work it out.”  

By now I am standing with my mouth hanging open truly amazed by his logic and my older son is rolling on the floor laughing at him.  My older son asked “How long do you expect her to travel?”

“Only until I get married. Once I have a wife it will be her job to do my site changes.”  

I pray he gets a wife that will see his logic! 


Oh versus Argh!

I had reminded my son numerous times that it was site change day.  Our movie ended and he headed off to his room. I followed a little while later to give that one last push regarding a site change. 


When I looked into his room, he was sitting on the bed with his site one hand and his other hand was poking his leg. 


“What are you doing??” I asked incredulously. 


“I am looking for a good spot. I need to find the place that when it goes in I go–Oh!Its in?  rather than YIKES! EEK! Man that hurt!”


It made sense I guess but I just look at the spot, find a place with no injection marks, clean it and jab.  Its a simple process.  He was still routing around his leg. 


“Why don’t you just stab it and get it over with?” I asked. 


He looked at me like I had lost my final marble.  What planet did I come from, I am sure he wondered.  Finally he replied that it had to be just the right place. He lined up a spot and then took the site away. He closed his eyes.  He opened his eyes. He made a few faces. 


“Just count to six and BAM! Its done. Why are you clicking it a hundred times? You will wear out the inserter before you ever start.” 


Once again “the look”.  He explained that by clicking and inserting in the air he was loosening it up so that it would be easier when it hit his leg.  It was now my turn to look at him like he has lost a few of his precious brain cells. 


I continued to watch, wonder and press as to when he was actually going to put the site in instead of mauling his leg. After much grumbling I heard the “bang” and….


“AAARRRGGHHH! You shouldn’t have pressured me. You had me hit the wrong spot!”  My son continued to moan and groan in pain as I checked to make sure the tape was in place. 


I felt rather bad (but I couldn’t tell him that). I left the room and shook my head.  Each day he (or I) stab his fingers and make them bleed numerous times.  He says it doesn’t hurt anymore but does it hurt any less? Every 3-7 days (his count not mine) he will stick a larger needle somewhere into his body so that he can live another day.  


I just read a blog post by Scott Johnson in which he notes that diabetes is a constant attack into every aspect of his waking and sleeping life and the only respite will be when he dies–or there is a cure.  It breaks my heart to read this. It breaks my heart to see others go through this and even more so to see my son living that same life. Diabetes is a cruel disease.