Category Archives: Life with diabetes

Recipe Nostalgia…How things have changed!

When Diabetes moves in...
When Diabetes moves in…

I smiled a bit when I turned to this recipe yesterday.  My mom always told me that you could tell if a recipe was good by the amount of food spilt on its pages.  Obviously, this recipe had been used once or twice but that wasn’t what made me smile.

As I looked past the blotches of vanilla that splattered the paper, I noted the influence of diabetes on the page.  The first set of notations showed the days of living with exchanges.

When my son was first diagnosed with type 1 diabetes, his toddler meal plan was as follows:

Breakfast=1 Fruit, 1 Milk, 1 Starch, 1 Protein and 1 Fat

Snack=1 Starch, 1 Fruit

Lunch=1 Fruit, 1 Milk, 2 Starch, 1 Protein

Snack=1 Starch

Supper=1 Fruit, 1 Milk, 2 Starch, 2 Protein, and 1 Fat

Snack=1 Starch, 1 Protein, 1 Milk

It would appear that if he wanted to have a carefully measured bowl of rice pudding, it would have been 1 Milk and 1 Starch…almost good enough for a night-time snack!

I can see how the recipe stayed the same but method of calculating what he could eat changed with time.  The second set of notations simply states “28g=125mL”  This meant that if he ate 1/2c of rice pudding, I would factor in 28g CHO.

I don’t see the carb factor for this recipe.  That is strange but perhaps my son no longer ate rice pudding once we figured out that method of carb counting.  More likely, it was just as easy to grab a 1/2 c measuring cup to scoop out his dessert than it was to grab a scale!

Either way, its interesting to look back and see how far we have come.  Thankfully the days of eating a very regimented meal plan didn’t last very long.  With the help of an amazing group of friends, a fabulous dietitian, and a forward thinking doctor, we were able to learn how to make food work for us rather than fighting to make a 3-year-old eat food that he didn’t want. Today, my son eats anything and everything that he deems proper for his body.  That can mean green tea and tuna or a Grandpa Burger from A&W, an insulin adjustment and he is on his way!

Diabetes Scholars Cookbook…Like Pinterest that you can hold in your hands!

The other day when I went to my mail box I almost screamed with glee.  Inside was a parcel from a lady I know, Mary Podjasek.  Mary happens to run a charity that I love–The Diabetes Scholars Foundation.  A parcel from her meant that my new cookbook had arrived!???????????????????????????????

I know you are thinking, “I don’t need a cookbook. I use Pinterest and get great recipes instantly without a tonne of books laying around my house.” I have to admit that when my friend Jane said that she wanted to do this and she was going to have a real, hold in your hands book, I was kind of thinking the same way.  I love Pinterest.  It makes my life so much easier. I have a zillion recipes pinned to try one day. I also have a cupboard full of recipes and recipe books that I always go back to.  Perhaps Jane was on to something and she was!

I bought my cookbook because it was a great price (only $20 and that included shipping to Canada!) and because it supported a cause that I love–Children with Diabetes’ scholarship funds. ???????????????????????????????

In 2015, there are many supports out there for families of children living with diabetes.  Every house has internet access.  Every child now receives a Bag of Hope either in the hospital or soon after going home.  In 2000, that was not the case.  When my son was diagnosed, I was given the phone number of a lady who would later become a good friend.  We were both fumbling, trying to deal with toddlers with diabetes.  There were few other supports.

Within a year after diagnosis, my mom convinced me to get this thing called the internet for my home computer.  My computer would dial a local number and I would be connected with the world–my phone line would be tied up during that time, but I could connect with my family all over the world.

What I didn’t realize was that the sound of clicks, rings, and whirls would also connect me to a new family–a family of people who were also living with diabetes.  I would be connected with people who had children the same age as mine with diabetes, older children with diabetes, and people who had diabetes themselves.  I would be accepted and welcomed into a family that would always be there for me through diabetes issues and even much more private ones.  They would be there with cyber hugs and real hugs when we would meet.  They would be available at all hours to talk and share.

???????????????????????????????Today, times are a little different.  The internet has evolved.  We now connect on Facebook, through emails or even the occasional text. The bond and the appreciation has not changed at all however.  I look forward to conferences when I get to see many of them.  I continue to plan to one day get back to Florida in July of some year to be able to sit around the hotel and chat with many more of this family that I don’t see often enough.

???????????????????????????????In the meantime however, I can now peruse through this cookbook and see many familiar names. I can sample recipes that I have drooled over in online photos.  With each page, I see love and compassion.  The layout of the cookbook takes me back to many of my favorite old cookbooks and I know without a doubt that this will become one of my new favorites!

If you haven’t ordered your cookbook, I would encourage you to head over to the Diabetes Scholars website and get one before they are sold out. There was only a limited number printed.  The goal is to be able to send three families to the Friends for Life conference in Florida and it only costs you $20!

That is one of my recipes in the bottom left 🙂

Thank you so much to Jane, Kara, Stacey, Mary and all of the others who contributed and put this book together. Thank you for bring a little piece of my diabetes family into my kitchen!

 

Luck of the Irish

I am not Irish.  I have never really thought much about St. Patrick’s Day.  As a grade school child, it was a day to make shamrocks and wear green to school.  Over the course of the years, it was just another day.  That was until the year 2000.

That was the year that we all spent wondering if the banks would shut down.  Would the Y2K issue crash everything that we had come to rely on? How would our lives change? Well, Y2K never really seemed to impact much but the year 2000 did forever change my life. It was the year that my two year old son was diagnosed with Type 1 diabetes and was given just 24 hours to live.

For 15 years, March 17 has been a day of sadness and celebration. I grieve for the life my son never got to have–a life without carb counting, injections or blood glucose tests.  Its been a day when I relive every minute of naivety, fear, panic, and gratitude.

Fifteen years later, I live in a city that celebrates St. Patrick’s day with a holiday.  I have had the opportunity to go to Ireland and fall in love with the country’s rich history.  I enjoy listening to many lively Irish tunes.  Its listening to those songs and thinking of this day that led my mind ot wonder if perhaps it was that Irish luck that protected us all of those years ago.

Perhaps it was the whisper of a leprechaun that put my son to the front of the cue in the doctor’s office on that St. Paddy’s day so many years ago.

The doctor who would go on to look after my son from ICU to an independent teen could have been an oversized leprechaun…with a different color beard of course.  He was definitely a stroke of luck.  He was one of the few doctors in that area who were forward thinking with their prescription of insulin regiments. He also believed in allowing us to learn and grow with my son’s diabetes care.

It was definitely the luck of the Irish that led me to make one of my first ever online searches for “parents of children with diabetes”.  It brought me to an online email support group that would become my lifeline.  With the stroke of a few keys, I “met” people from all over the world who would become my family.  I met people who knew exactly what I was dealing with and could help me to find my way.

I found mentors and friends who would be with me through the highs and the lows.  We would stay connected, meet on occasion and always been there for one another.

Through them, I would find the strength to go forward and help other people.  I would find a way to make a mark and hopefully improve the lives of other families living with diabetes.

March 17, 2000 changed our world.  It showed us the insidious nature of type 1 diabetes.  The luck of the Irish has been with us in  many ways however.  We have received  numerous gifts along this bumpy path.

Fifteen years later, my son is on the verge of graduating high school. Type 1 diabetes is just something that he has lived with for as long as he can remember. I would still give anything for him not to have to deal with this but its a part of him that he has come to accept.  March 17 is a day to celebrate the luck of the Irish, the blessing of those tricky little leprechauns, and the day that my son received his first injection of life saving insulin.

from blackberry (10)

 

 

Seeing Blue…still

In July of 2011, I sat down and posted my thoughts on the blue candles.  Those of us in the Diabetes Online Community know them all too well. They are candles lit when a person with diabetes loses their fight with this disease.  

Once again the candles are lit.  A Canadian girl.  A 17 year old young lady who would soon graduate.  A child the same age as my son.  I don’t know the details. I don’t need to know. I can’t begin to imagine the family’s pain. I can’t even think about it. I would be swallowed up by the grief and the sadness. 

Blue Candles–they are the candles that we light in cyberspace to remember someone with diabetes who has lost the fight. Each month, each week, we seem to see these images pop up across the online community.  As profile pictures are changed on Facebook stories emerge, fears grow and the desire for a cure is that much stronger.

Most recently the candles were lit for a bright, young fourteen year old girl. She was diagnosed when she was four years old.  She laid down for a nap and her father found her dead on her bed a few hours later.  The story sends chills down my spine.  She did not die at night. She passed away sometime during the afternoon.  We do not know many of the details.  We only know that she was far too young to die.

I don’t tell my son about these stories any more. He is almost the same age and has had diabetes for a few years more than she did. I don’t light candles on my Facebook profile.  I don’t write about half of the stories that I hear.  I can’t. I read about these children–whether they are fourteen or forty, they are still someone’s children.  My heart breaks for the parents and the families. I hug my boys a little closer. I pray a little harder. I hope for the very best.

I was reading a story one day of another child lost and of course had teared up a little. Someone told me that many children sadly die each day.  It could be a complication from cancer or an asthma attack but other diseases kill as well. It was suggested that I can’t focus on these deaths and be obsessed or paranoid. I reassured this person that I wasn’t. I read. I mourn. My heart aches for the families and I grieve for the life cut short before its time.

It is true that our children die crossing the street, riding in cars and playing in swimming pools.  As parents, we do our very best to protect them.  We teach them to look both ways before crossing the street. We put them in car seats and demand that they were seat belts.  We teach them water safety and we warn them about the dangers of drugs and alcohol.  All in all we do our very best to guide them and pray that they will be okay.

As parents of children with diabetes, we do all of that “normal” stuff and then we do a little more.  We work to help them to recognize highs and lows.  We test them as often as we can.  We keep tight control to prevent complications and fear going too far and having to wake to a child gone because of a low.  These fears are real. They do not keep me up all night but they do wake me up at 2am to test.  They do not stop me from letting my son be a child but it does make me check his pockets for glucose and his cell phone when he goes out.

As a parent, I cannot protect either of my children 24/7 for the rest of their lives. I wish I could. As much as I love watching them grow, think and spread their wings, part of me craves for the days past when I held them tight and could keep them safe in my arms.  They are growing. My oldest son is driving and almost out of school.  My youngest is well into his teen aged years and venturing off on his own more and more.  Diabetes or not, I can only pray I have done my best, continue to do as much as I can and leave the rest up to a higher power.

Last night was my son’s first night home after a few weeks away. I went to bed and woke a few hours later than I had planned to but he was low. The story behind one of the recently light blue candles played itself out in the back of my head. After 45 minutes and a lot of juice, his blood glucose levels were back in range and I could return to bed. I said a prayer of thanks that I woke up to test him. I prayed for families who were not so lucky.  I touched my son’s hair and wanted to hold him tight and kiss him gently on the forehead like I used to when he was small. He is now a teen. If I did anything beyond quietly touch his hair he would wake up creeped out and would claim nightmares for the rest of the night! Instead, I watched him sleep and I thanked God that he was alive, healthy and happy.

I will test my son at all hours. I will remind him to bolus.  I will deal with late night lows.  I will demand to know where he is going when he leaves the house. I will preach the evils of smoking, drug use and the dangers of too much alcohol.  That is my job and I need to know that when I close my eyes I have done that job to the best of my ability. This will never guarantee the 100% safety of either of my boys but its my very best and that is all a parent can ever do.

What can $400,000 buy?

According to MoneySense.ca, the average cost of raising a child to age 18 is a whopping $243,660.  

According to my calculations, the medical costs of a child with type 1 diabetes diagnosed at 2 until he is 18 years of age is $151,323.  That means that raising this child until he is 18 probably cost close to $400,000 in total!

old houseFor $400,000 I could have paid off a really nice house.  Actually knowing the cost of my first and second homes, I could have paid off more than one!

For $400,000 I could have travelled the world. I could have taken safaris in Africa or wandered the streets of Paris.  I could have enjoyed the tropical beaches of Bali.

For $400,000 I could have owned some amazing cars. I could have had my dream green Jaguar or a lovely Stingray Corvette.

$400,000.  Its not enough money to live on forever but I could have done a lot of things with it but that didn’t happen.  $400,000 kept a child in clothes.  It kept a roof over his head. It tried to keep pace with his ever growing appetite.  It paid for life saving medical equipment.

For $400,000 I got a lot more than cars, trips or a new home. For $400,000 I have been able to touch the tiny hand of a new little person.  I was able to watch him bravely take his first steps.  I was able to watch him master hide-and-go-seek as he stealthy hid under a pile of laundry for hours, never revealing his position.

SCN_0002I was able to hold him tight as he lay scared in the hospital as his body worked to repair itself after being deprived of insulin for too long.  I was able to watch him play with his friends who would protect him and tell any adult who was curious that their friend’s pancreas had broken so he had to receive needles.

$400,000 bought me a young man with a quick wit whose strong arms can take away some of the greatest pain. It gave me my son–alive and healthy.  The value of my children is far beyond any dollar value that you could imagine.

Children are expensive. That is a fact.  Their needs are great.  Children with diabetes have an added expense that they will have for their entire lives.  The value of both and children with diabetes is immeasurable however. From the minute we know of their existence, our children grab hold of our hearts and never let go.  We do our best to protect them.  We are there to hold them and dust them off when things don’t go according to plan.  Through the ups and downs, they remain a very special part of us. They are worth far more than just $400,000.

How much would it cost me to manage my diabetes?

The other day, it seemed like I was constantly having to use the washroom.  I thought, what if I was one of those people diagnosed later in life with Type 1? How would I handle things? I don’t even want to go there!!!

I knew if was not a real concern.  I knew that I would do what must be done but I would not dwell on the daily routine.  I did however begin to think about the financial aspect.  What if I did have Type 1? I am over 25.  I have no private medical coverage. I would have to cover everything out of pocket.  How expensive would that really be?

First there would be the insulin pump.  I would definitely want the best technology to help me along.  Since I already know what is out there I would most likely look to purchase a sensor augmented insulin pump.  According to a recent letter from my son’s insulin pump company, the initial cost of such a pump would be $8240.  This would give me an insulin pump, a CGM transmitter and four sensors.  I am guessing that I would still need to buy the receiver for another $700.  A box of cartridges would last me ideally for one month as would the infusion sets.  Those items are $64 and $195 respectively. For a total of $9299 I would have a pump with no batteries or insulin but I would have a pump.

Obviously if I have type 1 diabetes, I would need to purchase insulin for myself.  That works out to approximately $70 per month if I am using an insulin pump and able to squeeze every drop of insulin from each vial.

I would also have to test by blood glucose levels 8-10 times per day. Perhaps I would test a little less because of my CGM but even at 4-8 tests per day I would require $90-$180 in strips per month.  This does not include having to purchase ketone strips which are over $3 per strip for use when high or ill.

Finally there would be the batteries for the pump, the alcohol swabs, SkinTac wipes, spare syringes, lancets and tape that would also be required to keep me healthy.

Our province does have a public medical program that I would qualify. It looks at our family income and then dictates that we must cover an amount equal to 7.5% of our family income first.  My partner runs his own business so our income can fluctuate.  I would anticipate that based on their formula, I would have to spend at least $4500 on my diabetes care before they would begin to cover any of my expenses.

Sadly, based on my calculations, the items that the government would cover under their program (insulin, some test strips and syringes) would most likely not reach the magic number of over $4500.  I would instead be left to cover, out of my own pocket well over $14,000 in annual expenses.

I honestly had no idea what the total of this would be.  People with diabetes tell me all of the time that the cost to keep themselves alive and healthy is the same as a car payment or a downpayment on their first house.  They are not exaggerating.  The costs of maintaining your diabetes care in the best way possible is over $14,500 by my calculations.

The chart below is based on never getting sick. It assumes that no sites will fail or fall out while hot, sweaty, or get hooked on a cupboard door and become removed. It assumes that insulin will never spoil and everything will work out as anticipated.  That never happens in life or when dealing with diabetes.

Without private insurance or a rich great uncle, there is no way the average person can afford to maintain optimal health care if they also have type 1 diabetes.  Yes, you can live and function on injections.  Yes, you can live and work without a Continuous Glucose Monitor (CGM) but if you want to use the best tools available to give you the very best quality of life….well find a job with great insurance because if you have to rely on just your wallet and the help of the provincial government and you are over 25, its not going to happen.

sensor augmented pump costs feb 2015

15 Years later and its still happening

On my Facebook news feed, there has been a lot of mention of a child who was recently diagnosed with Type 1 diabetes.  Too many children are diagnosed each day but this story is getting greater attention because she was not diagnosed until she was in a coma and now appears to have brain damage.

I can’t give you the details of this particular story.  I haven’t followed it.  I see the photos.  My heart breaks for the family and the young girl but I can’t sit down and read about them.  I can’t follow their story.  It cuts me to the core because I know that there but for the grace of God go I.

It was almost 15 years ago when my then two-year-old son was behaving strangely. He was clingy and tired. He was constantly soaking his diapers but he also was constantly drinking when he was awake.  We couldn’t keep him away from fluids. If we restricted what he drank to try to save his diapers, he marched his little body to the fridge and would guzzle apple juice from the carton.

We had taken him to the emergency room.  He had the flu we were told.  We waited for him to get better but he didn’t.  We made an appointment with our family doctor and our world came crashing down in waves.  Our doctor thought he had diabetes. He had ketoacidosis.  He needed x-rays.  He had to go to another hospital.  This was very serious.

I understood x-rays, hospital and serious.  My son was laboring to breathe in my arms and his body was cold.  It was serious but it couldn’t be that serious could it? He had been healthy all of his short life.

A trip to another hospital led to another wave of terror.  Now we were told new things. We heard diabetes again. We heard brain damage, heart attack, stroke, kidney damage, and “if he makes it through the next 24 hours.”

That was almost 15 years ago.  Someone missed checking his urine or blood during the first visit to the emergency room.  It almost cost my son his life.

Today we have insulin pumps. rapid insulin, continuous glucose monitors, and sensor augmented pumps.  We have meters that read bg levels in under five seconds but still we have children literally dying because a diagnosis of diabetes was missed.  A routine test of urine for sugar or ketones is not done when they are checking for everything else.  Doctors assume that its flu season and the child must just have a bug.

Its not their fault.  We feel that it is when its our child but they have to know so much and what ails the human body can be such guess work.  They could help themselves and our children however if they remember to add that one little screen to routine blood or urine work-ups.  A stick in urine will still show the presence of ketones.  Asking any parent of a child with diabetes how long it takes.  Its a matter of seconds and the urine sticks are cheap. ketostix_intensity

In 15 years a lot has changed.  Our meters no longer take 30-60 seconds to produce a reading.  There are other background insulin options besides NPH.  Insulin pumps are now so smart that they can talk to continuous glucose monitors.  Continuous Glucose monitors are no longer items that are blinded and reserved for only select hospitals.

Type 1 diabetes is finding itself in the mainstream media.  Insulin pumps are being shown and discussed in various television shows.

Despite all of these strides ahead, children are still dying.  People do not know what to look for.  As a parent, I didn’t know what diabetes looked like or even that I should be looking until the signs were literally posted right in front of me.

Healthy children get sick but they don’t need to die.  We need to work harder to get the word out there.  Families should not suffer this pain. No one should die or suffer the damage of undiagnosed type 1 diabetes in 2015.

 

New Yawk Sawse

One thing that has been brought to my attention over the years of advocating for people with diabetes is food prices. I know that it may sound strange, but often while in various groups and committees, the issue of the high cost of healthy eating comes up. Even if you had not realized it before, it quickly becomes apparent that there is a huge problem.  You can purchase 2 liters of Pepsi for $2 but it will cost you double that to buy the same amount of milk.  I paid $13 for three apples the other day (yes they were bigger apples but nothing overly exciting).  I could have purchased four bags of potato chips for the same amount. How can we ask people to work, pay for medications, a roof over their head and healthy food? Unless they have a good income, it can be a real challenge.

This is an issue that has bothered Chef Dennis Sheehan for some time.  He is a New York Chef with type 2 diabetes who had made it his mission to educate people on healthier ways to eat.  He created something called Diatize –a non-profit company that offers culinary advice and meals geared toward Type 2 diabetics and those wanting to eat healthier. “The difference between us and other diabetic-friendly meal options, is that we are cost-effective, tastier and more realistic; meaning real portion sizes, real flavors and food that’s cooked with love and passion.” says Sheehan.

Sharing meals and showing others in his area is not enough for Sheehan however,  ” We want to have a whole food line that’s affordable and fresh that offers an alternative to fast foods. Right now McDonald’s is selling 10 piece Chicken McNuggets for $1.69. its poison and people are eating it up for the price.” Sheehan’s first step towards that goal is the creation of his “Sawse”.

This tomato treat is vegan, gluten free, and low sodium, for those with allergies or sensitivities, and are prodsawseuced without GMOs or unhealthy additives.  It is made with only fresh ingredients and reviews have suggested that it tastes just like the sauce that Grandma used to make but without the added sugar!  The pictures speak for itself.  On the left is a commercially produced sauce.  On the right is Sheehan’s Sawse.  You can easily see the difference in the color and the texture.

While the hope is to one day make Sawse and Diatize’s other products available worldwide through a network of sales people and grocery store chains, at the moment it is being made in an incubator kitchen in New York.

sawseIf you are interested in ordering Sawse, I would encourage you to check out the Support the New Yawk Sawse page.  It also has a great video showing how the process comes together.  Personally, I look forward to continuing to watch Diatize grow and hope that there will be many more healthy, affordable food options available to everyone in the coming years.

The Bad and the Ugly

No longer having children live at home means that I don’t have to worry about school schedules. I don’t have to concern myself with getting teens out of bed that would rather sleep.  I don’t have to make lunches.  There is a great freedom there.

Having children who don’t live with you does not free you from worry.  My oldest son makes a 9 hour journey by car every 10 days to go to work. I stress as he drives home for his days off. I stress as he drives back to return for his next run of work. Some times my worries are even warranted.

The other night he had vehicle trouble. I sat by my phone all night until I knew that he was safe.  I felt bad for him.  He had to get up early for work.  I was able to try to catch an extra hour in the morning….or so I thought.

I have two sons and at 7am I heard from my younger son.  He was vomiting.  What should he do? When my boys are sick, Mom is still the first one that they call.  I asked him what his bg levels were? We needed to know if we were dealing with a tummy bug or a really high blood glucose level.

He told me that he couldn’t check. He was throwing up too much.  To prove the point, he sent me a picture.  You have to love boys!

Eventually his stomach relented and allowed him to test.  No bug, he was high, like super high, like “HI!” from a cheerful meter kind of high!  I hate that kind of high.  We went through the protocol….

Inject yourself with insulin.

Change your site.

Change your insulin cartridge.

Check for ketones.

The protocol took over an hour to complete.  He was throwing up and upset by the mess that was being made.  He was alone in the house and having to do everything himself.  My heart was aching.  This is the bad part of having your children move away.  You can’t take over and let them just be sick.  I continued to walk him through what had to be done.

Sleep was now impossible. I got up as I waited to hear what stage he was at.  Insulin was in. Thank goodness! Now at least his body had something to work with.

New site and cartridge were done.  One more step towards normalcy!

Now to stop the vomiting and get some recovery.  He had no gravol or any other anti-nausea medications.  He did find some fluids and worked to keep them down.

He found his ketone meter.  The results were in the “holy crap” category but just under the “you can’t do this alone. Get to the hospital now!” category. “Insulin and water” he repeated. “Don’t forget the test a lot until you have in range readings and no ketones.  Also, do NOT sleep.”  He told me that sleep was not an option.

We continued to stay in contact.  He continued to take charge of his care and get things sorted. I continued to hate diabetes for making him have to be so responsible at 17. We both survived. That’s the main thing….

vomiting2

Sad to see Dex Leave

Ready to use DexoCom!
Ready to use DexoCom!

As I mentioned, we were privileged to be able to try using a DexCom for seven days over the Christmas holidays. I was super excited. My son however was not exactly thrilled but willing to see what all of the fuss was about.

I am pretty sure I allowed him to put down his suitcase and open his Christmas gifts, but I don’t believe I gave him time for much else before we learned how to start the DexCom process.  I had been encouraged to watch the video a few times before actually inserting the device, so I had my son sit with me as we began.  The video paused and allowed you to do a step before continuing.  This was very user-friendly.

As we reached the insertion stage, my son suggested that we stop a bit and replay multiple times before injecting him with anything!  I agreed.  I was terrified that I would mess up.  Not only are these sites expensive, but we only had one to try and our rep was away enjoying the holidays.  I had to be perfect!

I was finally confident that I should be able to do this. My son was not exactly feeling the same level of confidence but eventually relented and allowed me to jab his body with the large contraption. It was a success! The sensor was in his body and he had not died. I asked him about the level of pain he experienced.  (It didn’t look like a big needle so I never even suggested asking him if he wanted to numb the area–bad mom)  He said it was close to having a site inserted–maybe a little less painful.  I was psyched!

Next came putting on the transmitter.  That was a challenge. I understand that it gets easier with time but I will say that figuring out how to get it to attach the first time took us a bit.  Once it was on, it was time to wait our two hours before the first calibration.  I was super excited to see what would happen.  My son was still not as thrilled but glad to no longer have his mother poking at his belly.

Two hours later we did our first calibration and my son resumed his normal activities. One of the first thing he did after putting in the sensor was to enjoy a nice jacuzzi tub.  The sensor is waterproof but I was still having a mild heart attack wondering if it really could take this.  I told my son that all was fine as long as the receiver stayed dry…but I was still nervous.

Would the jacuzzi mess things up? Despite telling him that he didn’t have to test as much with the DexCom, I made him test a few times just to prove to myself that it really was as good as everyone said.  The research didn’t lie.  The end users didn’t lie.  This little machine was awesome!

The accuracy was not perfect the first few days.  I had been told that the DexCom accuracy was not as great on the high-end as it was on the low-end.  We found that to be true.  When it said he was high, he was often higher still. That didn’t bother me though. It showed me a trend. He was high and going higher (we had a bad site).  It really didn’t matter if he was 15 or 25 (270-450). He was high and needed a correction. A finger stick gave us where to correct from but the DexCom told us if we were on the right track.  For me, the combination was amazing!

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Yes! It really did say he was dropping!

During the trial period, we had extreme highs (First lesson–do not calibrate when high. Since the accuracy already isn’t great, your sensor will be off a bit more than when its calibrated at reading closer to in range).  We also had lows.  The first low my son had while wearing the sensor came as we arrived at our cabin. We were unpacking our gear and of course he couldn’t help.  He was low.

“Really? Is it working? Did it tell you that you are low? Can you feel it? Are you actually low?”  My son scarcely avoided an eye-roll and passed me his receiver. It read low! There were downward arrows! He said that yes he felt low and we treated him.  The DexCom then told us that he wasn’t falling any more.  He could help us get the rest of the gear out of the truck and he would be fine! Oh happy days!

Yes, I loved the DexCom.  As we became more familiar with it, the accuracy also improved. I am not sure if  the sensor was working better with his body or if the increased data that it had to work with through a few days of calibration improved the accuracy but it was wonderful!

At night, I would get up and take his receiver into my room so that he could have a break from diabetes care.  It sat on my night side table and instead of getting up and poking him, I could roll over and watch a graph.  A non-D parent will never know how soothing looking at a graph can be but let me tell you, it was AMAZING!image

There were nights that my partner wanted to throw it out the window.  My son was high.  The DexCom told me so.  We corrected. The DexCom said it didn’t work.  We injected.  The DexCom said he was falling.  We wanted that.  The constant dialogue of beeps and vibrations were sending Larry over the edge while giving me peace of mind.

Not all nights were full of alarms.  The DexCom allowed me to also see my son have some of the best readings.  I watched one night in amazement has he maintained a steady 4.9mmol (88mg/dL) for hours.  Such a lovely number would normally have sent me into a night filled with stress. Would he drop? Would he rise? I would be testing a lot wondering or I would be pouring chocolate milk down his throat hoping to slow down a decline in blood glucose levels.  With the DexCom, I was able to simply relax and  watch a perfect night unfold in front of me.

The biggest gift that the DexCom brought me was pride in my son.  When he moved away to live with his father, we said he would share readings with me and we would talk about his care.  Well, reality was very different and with the exception of “yep, all is fine”, I have had no real information on how he was doing.  When he visits with me, there are often problems due to change in activity levels and eating as much of Mom’s food as he possibly can in a short window of time.

He still ate a decent amount.  He also was a little less active that he might have been at his father’s but his readings were generally quite good.  The DexCom showed us a few issues–some of which he knew about but hadn’t dealt with. Together we talked about changes.  He challenged me about some ideas and after a discussion, we made the adjustments that we both felt were required.  I was proud to see that he had listened to what he had been told over all of these years.  He was taking ownership of his disease and doing a good job of it.

I was sad to see day 7 arrive.  It was the end of life with a CGM.  It also meant that my son was heading on a plane back to school and his other home.  The last part was the hardest but it also hurt that he would be leaving without this amazing technology.

I asked him what he had thought about the whole thing.  Once again, he was not impressed with the extra site. I think he quite enjoyed being able to simply look at a graph to know what to do about his readings–he was rising, he was falling, he was nice and steady.  He is not quite ready to carry a second device however nor is he ready for a second site.  I see that changing in time.

Our rep kindly offered to let him use it again in the near future if he wants.  I am sure we will take her up on that offer.  I can see his attitude towards the DexCom changing with both use and the changes in his circumstances–moving from the classroom into the workforce.

I was always a firm believer in the benefits of this technology.  This one week trial just confirmed it.  Anyone living with diabetes should have access to this device.  It will change their lives and improve their diabetes care.  A running live-stream movie of blood glucose readings rather than snap shots throughout the day offers such incredible freedom and peace of mind. It should be a standard of care for everyone who has to live with diabetes.