It doesn’t end with November

November is drawing to a close and so is Diabetes Awareness Month. I have seen a lot of awareness activity over the month on Facebook and Twitter. People have been stating their wishes. They have given daily facts.  It has been amazing. As the month ends though, the best post I have seen came from a friend who noted that while Diabetes Awareness month is almost over, her son continues to have diabetes 24/7/365.

In December we will still be fighting for better coverage of diabetes devices and supplies.  In January we will still be fighting to improve education, awareness and assistance in schools for our children with diabetes. In February we will still be working to get our teens to remember that they have diabetes and must attend to their care.

That last statement is the most depressing to me.  I keep wondering, when will he ever learn??? Today I realized however that it had much more to do with him living with “teen brain” than it has to do with him having diabetes.

Last night, while logging his information off of the pump, I noticed that he needed a site change.  When he headed off to shower, I reminded him that that would be a great time to do the site change he was supposed to do a few hours before. He didn’t do it. As I headed to my room to read and fall asleep, I again reminded him to do his site change. He mumbled something back.  At four this morning he was high despite a change in basal rates. I knew that the site was not changed. This morning I got him up early with the words “Change your site before you do anything else.” 

As he was leaving for the bus, I asked “Did you change your site?”

“I will when I get home.”

AAAAHHHHHHHHHH!!!!! UUUURRRRGGGGHHHH!!! THUMP!

I was not pleased. I then looked into the garage where the box that I had asked him to take out to the garbage still sat.  He did not bother to remember the site change but he hadn’t remembered to do other chores either so what can you do? Scream. Bang your head against a wall. Make him do it when he gets home and threaten to do it for him in a site that he HATES…or eat your young before you ever reach this stage. The last idea is not longer an option because he is bigger than me.

No diabetes and teen brain do not end with November.

Forgot a diabetes supply? Never a problem in a house where D lives

This evening we have a guest who has Type 2 diabetes.  He is very conscious of his diet and testing his blood but because of uncontrollable circumstances, his meter did not arrive at our house with the rest of his things.

I heard Larry tell him that he was sure my son could help him out.  He knows that we have a number of spare diabetes supplies so finding an extra meter or lancet would most likely not prove difficult.

After overhearing the conversation going on the living room about supplies, I turned to my son and asked if he could help the gentleman out. He didn’t think that would be a problem. What type of meter did he want?  I suggested he grab one of the meters that we rarely use so we didn’t mess up logging the wrong person’s readings.

My son then asked “What type of lancing device?”

I was sure it really didn’t matter. 

“Well, there is one for the hand or the finger?”

The finger would be preferable.

“Hmm, well there is a bigger one or a smaller one?”

Oh my! I never knew there was such a variety! He calmly told me that there was. I told him that I would leave it in his capable hands.  I just wanted a lancing device with new lancet, a meter, and some strips please.

This is just the first few meters and lancets I found in his drawer!

Get a letter from Santa AND help Diabetes Research!

I love Christmas. It is my favorite time of the year.  My mom was and is huge about Christmas.  She passed this love affair onto me.

Its not about the shopping or the gifts. Its the lights, the decorations, the tree.  Its time with family and friends. Its little faces lighting up.  Its tasty treats and delicious egg nog. Its Christmas songs and a light dusting of snow. I have been wrapping presents and playing Christmas music for a week now. So imagine how excited I was when I saw the latest fundraising idea from the DRI?

Its letters from Santa! For a small donation, you can have Santa send your little elf a personalized Christmas letter and help fund diabetes cure research.  It sounds like a win win event to me! We would all love for Santa to deliver us a cure for diabetes, this is one of the best ways to help make that wish come true!

Go to Santa Claus’ donation page now.

Baking with Barb

I love to cook. I enjoy baking and creating new meals for my family. I love to follow food blogs and to scan through recipes.

Since diabetes moved into our house and I have gotten a bit older, I find myself altering recipes on a regular basis.  It is now important that foods be lower in carbohydrates if possible.  With a history of heart disease in my family and my own heart issues, it is also important for foods to contain more fiber and less fat.  This has meant that many family favorite recipes have been changed over the years. I am certain that my grandmother would roll over in her grave if she knew what I had done to some of her amazing recipes but we are able to enjoy the wonderful tastes while being a bit more healthy.

I have found that some recipes allow me to completely substitute Splenda for sugar while others require the “real thing” but in a lower amount. I have recently tried the Splenda brown sugar blend which seemed to work well in some cookies. I have added flax and whole wheat flour to pizza dough. I have learned to substitute some or all of the margarine or oil in a recipe with apple sauce. Sometimes the recipes work and sometimes…well Grandma did know what she was talking about.
The other day, I took my creativity to a new level and came up with a new cookie that will be a Christmas staple.  We were eating chocolate chip cookies with colored chips and I had a stroke of genius…Candy Cane cookies! If you have done this already or have a similar recipe, please don’t tell me. Allow me the illusion of thinking that I came up with this first…again, at least in my mind.

I took out a cookie recipe that my boys and their friends have loved for years and began my tweaking. I put the creation in the oven and loved the taste that came out. The resulting cookies were approximately 10g of carbohydrates per cookie and really yummy if you like a peppermint holiday treat. (Sorry I haven’t figured out the carb factor yet because I ate too many of the cookies before I remembered to weigh them).  If you are interested, here is what happens when you go “baking with Barb”!

Barb’s Candy Cane Christmas Cookies

Cream together 3/4c margarine, 1/2c Spenda blended brown sugar, and 1/2c Splenda
Beat in 1 egg and 1 egg white/egg beater, and 2 tsp of vanilla
Combine 2 cups of flour, 1 tsp of baking soda, and 1 tsp of salt
Gradually blend.
Mix in 1/2c of crushed candy canes (approximately 20 miniature candy canes)
Drop by a teaspoon onto lightly greased cookie sheet.
Bake in oven preheated to 350F for 15-17 minutes.

Yield approximately 28 cookies
Recipe is approximately 284.75 g of carbohydrates.

Two or Three?

Last night was one of those nights…you know the ones that you wake up but debate if it really is time to test or not? I have written about the debate many times. Last night was not a lot different.

I woke up at two.  Should I test? My bed was really warm. Maybe I could wait until three. My son had gone to bed a bit early and had tested earlier than normal.  He was perfectly in range which could spell disaster later. I decided that I had to get up.

Instincts were sadly right. He was low–not a lot low but low enough to need some glucose.  I dug through his drawers looking for some tablets. I know I have said how much he hates waking up to a glucose tablet hangover but tablets it was going to be. After grabbing three or four empty tubes of tablets, I finally scrounged up enough glucose to treat the low. I fed him as he slept and then stumbled to find my book and a place on the couch.

This process continued until 3am.  Despite the low being caught at 3.7(around 65), it took a lot of glucose to bring it over 4.1 (75ish). As I sat on the couch reading, I looked outside and noticed the snow that had fallen. The weather people had forecast a storm of snow, after an hour to treat my son’s low, a snow day would be a welcomed treat. I headed back to bed hoping that the weather would worsen and realizing that while I wondered if I should test at two or at three, Diabetes had decided that I would test from two UNTIL three. UGH!

Teen Diabetes Logic

“Before you go upstairs bring me in your meter.”
“Well you see Mom, I’ve got some good news and some bad news for you.”
“What do you mean?”
“Well you see there is good news and bad news.  The good news is that I have to do all my tests for the rest of the week! See, isn’t that great news?”
“Huh? What is the bad news?”
“Well you see I am going to have to do all of my tests for the rest of the week because I missed a few tests today at school.”

Back up the banana boat here! We have negotiated testing down to basically three tests per school day.  This is nowhere near my ideal but it works for him and is more than a reasonable request from me.  He must test as soon as he gets to school or at their first break.  This is about two hours or a little less after he eats his breakfast.  He is then to test before he eats his lunch–he is always to test before food hits his lips so how is this test ever missed? I don’t know.  The final test is two hours after lunch or just before he gets on the bus.  Because of scheduling the two final time slots are basically the same.  We have a three strikes rule–miss three tests and you lose a privilege. If he has already missed two tests and he only had to test three times during the day….

“Did you test at all today???? Let me see that meter. What the heck is going on?” My mind was still reeling from trying to unravel his logic and what I was coming up with did not look good.

“I told you Mom, I have to test for the rest of the week but see I tested at 3 and I did test at 1.  I was pretty high then but we really don’t know why because I kinda missed the morning test and the before lunch test but you see I do have to do all of my tests for the rest of the week.  That’s a good thing.”

THUD! Yes, that was the sound of my head hitting my desk in frustration. If only he could check his blood sugar levels as well as he rattled on with excuses and teen logic.

Sleepless with Diabetes

Diabetes has lived in my house for more than 11 years and 8 months.  During that time (and for a number of years before), I have never slept through the night. I wake up at least once but more often multiple times through the night each and everyone of those nights. whether my son is at home or not.
Each time that I wake up I run through a gamut of emotions… Holy crap! What’s wrong? Do I need to test? Is there something going on that I am missing? Should I get up? What time is it? I must need to test!
As well as… do you have any idea what time it is? You went to sleep less than an hour ago! Are you insane? Get some sleep! He just tested before he went to bed and that was only 20 minutes ago.  Roll over.  Sleep for another hour or two maximum and then test him.  At that point it will be okay.  He is alright. Close your eyes and shut down your mind. Enjoy the break!
Are you serious? What if he is low and I missed it? What if????
Go to sleep.
At that point, I will usually sleep for another hour or so and then am woke up by much of the same dialogue and mounting anxiety.  This time it is more of a “get your butt out of bed.  You wanted to be woken up, you were, now deal with it!”. 
I crawl out of my warm bed because I know that I will stress myself if I stay there any longer. I stumble into my son’s room, wonder where the light is and then pause as I watch his bed.  Just as I did when my boys were sleeping in their cribs, I watch.  I hold my breath until I see his chest rise or hear him snore. If he rolls over as I walk in the door, my heart is set at ease…until I test him.
No matter what the result is though, I do have some peace.  My son is alive.  He is okay.  Diabetes did not win.  I am doing my job. We will make it through another night…I think.

For some reason, the past few nights when I have woke for the fifth time in four hours, I have ached for the too many other parents who were doing the same thing.  I have been grateful for the parents who do not have this experience.  I have longed for the day when I don’t have to wake and worry…whether my son is with me or not.  I longed for the day when it is safe for him to sleep…as well as me.

More noises from Charlie Brown’s Teacher

When my son came home from school, I reminded him that I wanted to look at his pump and meter later that evening.  I asked him if he knew of any trouble spots that I should be concerned with. He said that he had been high after breakfast but felt that that was probably because of a bolus error. Everything sounded good…until I checked the meter and the pump.

I looked at the meter first. There was a 5pm test and a 1pm test.  Okay, what happened to the 2:30-3pm test? There was the high from breakfast, and the tests from the previous day but wait, we were missing a few more tests.  There were almost as many missing readings as there were readings. This was not good.

As I thought about the after breakfast high, I began to wonder…”Let me see your pump.”

“Are you going to make some changes?”

“Just let me see your pump.  Yeah, I thought so.”

“What?”

“Well, you came home after school went straight to the fridge.  I asked you if you had tested and you said that of course you had but your meter says that you didn’t. I see that you didn’t bolus your lunch until 1:30pm. Since you are in class at that point and a missed meal bolus alarm went off, I am guessing that you forgot to bolus your lunch.  When I checked for a breakfast bolus, which I remember asking you not once but twice this morning if you had done it, guess what I saw? No bolus again!!! You seem to be forgetting an awful lot lately.  Are we going to have to go back to you testing and bolusing in front of me as well as texting me all of your readings from school? Will I have to demand your meter the second you walk in the door from school?”

“I can’t believe this.  I must have remembered to bolus. I can’t believe I forgot to test.  Let me see. There has to be some mistake!”

I handed him the pump and told him the only mistake was his in forgetting most of his care. He had only bolused for one meal that day and that was the meal that I bolused. Things would change I reminded him as I walked out of his room.

Outside, I wanted to bang my head against a wall. Oy!! We really do make one leap forward and six shuffles back.  Teens really do have minds of sieves.  Its back to observing and not just reminding. Its hoping that one day some of what I say will sink in and mean something. One day I hope my voice will be more than the squawking sound of Charlie Brown’s teacher.

My take on the Artificial Pancreas Project

The other night we sat in on a lecture about the Artificial Pancreas Project.  In all honesty, I have paid very little attention to this project. I heard the hub-bub when the JDRF announced that they were funding research that was not cure based.  I have seen the online petitions asking for the FDA to move the project along a lot faster. Other than that I have been fundamentally ignorant.

I have however slowly worked to educate myself whenever possible.  I had many concerns about the project and looked forward to learning and seeing if my fears were founded. Sadly I think that they are.

Dr’s. Anhalt and Krishna (his first name but his last name is far too long and complex for me) explained that the project had many levels.  They were working on simply suspending insulin during a low and ultimately reaching the point where they could truly close the loop.  Their main focus at the moment was to see a viable product on the market sooner rather than later (within 4-7 years).  The bringing together of glucometers, CGM, insulin pump technology and human intelligence was a huge obstacle.  These things work fabulously apart but bringing them together brought many new issues. To make matters more complex, regulatory bodies have never before been asked to rule on the safety of medical devices that make decisions like this one will.

For me, one of the obstacles to an Artificial Pancreas as I envisioned it was the number of sites and devices that one had to carry and use.  I asked how this was to be handled.  They stated that it was a real challenge. You cannot get down to only one site (which my son would want) because you cannot deliver insulin and measure glucose levels in the same area. They would work towards one device but felt that the loop may never truly be closed.  It was also stated that artificial intelligence would not be put into the system in the foreseeable future. 

Another issue is in the fact that sensors lag behind in what they say the blood glucose level is.  Insulin lags behind in its action time.  There is no way, at the moment to get immediate results to immediate problems. We need more accurate and timely sensors as well as faster insulins. To date there is only predictions and educated guesses.  This is very concerning to me. 

Larry voiced his concerns as well. At the moment we are talking about devices “talking” to one another.  We have so many devices that we use on a regular basis, how could we be guarenteed that they would not interfere with one another? He wondered how my son could sit in his room with his cell phone, his laptop, his XBox head set, his pump, and his CGM and not have any of it interfere with each other.  We were told that this was a real concern.  At the moment they were working to secure specific radio frequencies to ensure that there would be no interference but we still had worries.

My final concern, and the concern of many others in the room was cost.  This is a huge project.  The actual dollar figures were not available but we all knew that it was way more than what we had in our pockets. Some of the cost of the project will most likely have to be recouped in sales at a later date. Would the Artificial Pancreas then be out of reach to those who need it most? 

We were assured that the JDRF in the US was working with insurance companies so that when the product did come to market, they would cover the device.  This does not help those of us in Canada.  Our system works differently and while it is important that private insurance companies are onside with this device, it is even more important that provinces recognize its value.  Who will be working on that angle? Currently we are asking our governments to cover the pieces–pumps, glucometers, CGMs and supplies.  Will they cover the Artificial Pancreas when it comes to market? We can hope.

While there are many issues to be overcome, the project does have some positive points as well.  Moving forward with sensor technology will hopefully provide us with more and better data on blood glucose trends. This data can be used to keep A1c’s down and reduce the chance of complications.  These same sensors can ideally act as our watchdogs at night.  They can wake our children or ourselves when a blood glucose level is rising or dropping to a dangerous level. That is one thing that would help this mother sleep a lot easier at night. Now to just convince my son that this would be a far better system than him building me a room in his house!

Dear Government

Those of us in the Diabetes Community are quite well aware that November is Diabetes Awareness Month. For years, I have found something new and unique to do each year.  I have sent out general information letters to everyone I could think of, I created a book of the faces of diabetes with real people and their real stories, I have gotten a tattoo, and much more.  This year I decided that November was the perfect time to get back to a focus that is very dear to my heart–advocating for increased access to devices and supplies for people with diabetes.

November is a great time to do this because of course its Diabetes Awareness Month, but it is also the month after our new government formed and a time when they are beginning to plan for the spring budget.  I wanted politicians in my province to be thinking diabetes before they sat down to spend my money.  The following is the letter that I will be sending out to all Members of the House of Assembly.  If you live Newfoundland and Labrador, I would ask that you copy this letter and send it to the Minister of Health, the Finance Minister and your MHA (if you have a newly elected MHA, their contact can be found on their party websites).  I would then ask that you copy it and send it to your friends and have them do the same.  Public pressure works and we need to change this program. If you don’t live in Newfoundland and Labrador, please feel free to copy this letter and tailor it to your own needs. While a cure is ideal, until it is found our loved ones deserve access to the best equipment out there to keep them alive!

November is Diabetes Awareness Month.  There are now almost 3 million Canadians living with diabetes.  Approximately 10% of those are living with Type 1 diabetes, an autoimmune disease that attacks the insulin producing cells of the body leaving the victim reliant on an external source of insulin to live.  A person without insulin is like a car without gas, their bodies cannot function and they will die.

In Newfoundland and Labrador, people living with Type 1 diabetes currently are able to receive their insulin through the best available delivery system—an insulin pump.  This small life sustaining unit allows the user to pre-program their insulin needs into a computer which will then delivers the insulin to its user at specific, minute amounts throughout the day and with meals or to combat high blood sugar levels.  When a person with Type 1 diabetes reaches 25 in this province, they must either have the financial resources to pay the extra $5500 per year for an insulin pump and supplies or go back to a less reliable method of insulin delivery through injections. We hope that soon the government of Newfoundland and Labrador will see fit to change this and join Ontario in extending its pump program coverage to all of their residents with Type 1 diabetes who do not have private health insurance regardless of age.

Despite the advances in technology and the availability of insulin pump therapy to manage Type 1 diabetes, on November 2, 2011 the American Juvenile Diabetes Research Foundation publicly noted that one in twenty people living with Type 1 diabetes will die because of a low blood glucose level (this occurs when there is too much insulin in their body and not enough sugar).  This number is unacceptable.  In a technologically advanced society such as ours it is also unnecessary.  Beyond the incredible emotional strain that this threat puts on families and people living with diabetes, such a high mortality rate also has a large financial impact in provinces such as Newfoundland and Labrador which have exceptionally high incidences of this disease. 

This number can be changed.  A cure is the most glaring way to “fix” this problem.  A cure would eliminate the need for government funding of insulin pumps and subsequent spending on diabetes related complications.  Many great organizations throughout the world, including the Diabetes Research Institute work solely on this mandate. 

Until a cure is found, another way to reduce the number of low blood glucose related deaths is to provide real access to the technology that is available which would protect all people living with diabetes.  Recent advances in pump technology offer suspended insulin delivery when a person is already low and non-responsive as well as Continuous Glucose Monitors (CGM) which “speak” to the insulin pump.  A CGM is a computerized device worn by a person with Type 1 diabetes that monitors the trends in blood glucose levels. It tells its user when they are in danger of having their blood glucose rise or fall.  These predictions help to maintain a stable blood glucose level which reduces long term complications. The alarms also help to ward off dangerous lows that will render the person with Type 1 Diabetes unresponsive or dead.

According to a 2009 Canadian Diabetes Association report on the economic costs of diabetes in Canada, the indirect cost of diabetes related illnesses and death was approximately $8 million in 2010 and another $3.1 million in direct cost. Those living with Type 1 diabetes are responsible for 40% of these costs. The funding of insulin pumps and continuous glucose monitoring can dramatically reduce this economic burden. Insulin pumps have been shown to significantly reduce hospital visits by people with diabetes. 

As November is Diabetes Awareness month, I would invite this government to learn the facts about Type 1 diabetes.   This is a silent killer that is claiming one in twenty people as its victims on a regular basis (after drafting this letter we learned of yet another young person who died because of hypoglycemia during the night of November 9th). This number can be changed. It has to be changed.

With proper tools, education and awareness, people of all ages with Type 1 diabetes can live to be productive healthy members of our society. I would ask that you review the provincial insulin pump program and look to expand coverage to cover all people who live with Type 1 diabetes who do not have private insurance for both insulin pumps and continuous glucose monitors regardless of their age.
Sincerely;
Barb Wagstaff
(mother to a 14 year old with Type 1 diabetes, diagnosed March 2000 age 2)