He’s Got This

calling momIts 7am. My phone rings.

“Mom, what is the pump log?”

“It is probably a sheet for you to put all of your pump information as well as everything you ate and bolused for the past 5 days.”

“But I put that on the other sheet.”

“They send out two sheets. One is for those on injections to fill out and one is for pumpers.  It doesn’t matter which sheet you used as long as you provide them with all of the information that they need.”

“Okay.”

I hung up and began my day.  My son was heading off to what could be his last appointment at his diabetes clinic.  He will be 18 at his next appointment and will most likely be transitioning to adult care. Oddly, this was not the first appointment that he has gone to without me but he seemed to want to get this one right. I was impressed.

At 10am I got my second call…”Mom, can you go into the pump manual and figure out where I find my Insulin Sensitivity?”

I dug around in the closet, pulled out the pump box, found the manual and began searching through pages.  I gave him the instructions and took a guess at the answer.  I was wrong.  I guess I am a bit more out of the loop than I thought.

I wished him luck and he continued on with his appointments.

Later that day I asked him how things went.  He told me that he is done with the clinic. They will refer him to something a bit closer to home for all subsequent appointments. I asked if he had been referred to a new doctor. He said no, his doctor was keeping him on for another year.

He was looking forward to a new doctor so I asked him how this appointment went. He said it was great! It was short (could that be because he actually was prepared, looked like he knew what he was doing and they didn’t have to pry answers out of him??).  They were both happy.  There were no A1c results because he only went to get his blood work done the day before his appointment but he would live for another six months so all was good.

The day was an interesting experience for me as the mother of a child with Type 1 diabetes.  My son was/is independent in his daily care and now in his medical care as well.  Despite that, he knows that he always has a someone who will help him whenever he calls.  I no longer hover with advice or suggestions (well not a lot) but he knows that if he presses my number, I will help no matter what.  That is a very good feeling.

 

I Wish People Knew that Diabetes…Day!

iwishpeopleknewthatdiabetes

Yesterday the talented Kelly Kunik asked people to tweet using the following prompt…#IWishPeopleKnewThatDiabetes  The response overwhelmed her and made many people feel less alone.  It was a fabulous initiative. I sent out a few of my own tweets as well.

Diabetes is a complex and complicated disease.  What did we want people to know? Many of us wanted people to understand that this is a very serious disease.  Yes, my son looks normal and for the most part he is normal–a lot unique but quite normal.  Very little stops him in life but everything he does comes with extra thought that others don’t have to consider.

He has to look at the nutritional value of food every single time he puts it in his mouth.  This doesn’t mean just reading labels when he is on a specific diet, this means every single day since he was 2 years old.  No matter what he eats, he must know exactly how much energy or carbohydrates are in the food so that he can match it to the amount of insulin he will require.  Too much insulin can put him in a coma or kill him, too little insulin can ultimately do the same thing.  He has to give his best guess on how that food will react in his body–how long will it last in his system? Is it a higher fat food or does it have a lot of protein or fiber? Will he be exercising right after he eats? Did he exercise a lot yesterday? Is he coming down with a cold or is he worried about an upcoming event? Everyone of those things and more will impact how his body metabolizes the piece of food he wants to eat and how much insulin he will require.

There is no respite.  He must make those decisions every time food touches his lips  After 15 years of diabetes education, he makes the process look easy.  A person looking at him rarely notices the insulin pump that he carries in his pocket.  Few people see him lance his finger.  It is rare for people around him to know how much it takes for him to keep himself alive and looking as healthy as he is.

When he visits me, he gets a small break.  I test him while he sleeps and make the corrections.  I will help with site changes and we will bounce ideas off of each other on how much insulin he requires.  He still carries the bulk of the load now however.

To stay healthy and complication free also requires a lot of money or great health care coverage.  My son has been lucky.  His father had coverage for his insulin and test strips.  When we decided to put him on an insulin pump, we received help on the cost of his first pump and later received generous support for pump supplies.  In recent years, our province has begun to cover both insulin pumps and his supplies.  This is a huge financial relief. As I showed back in February, diabetes is very expensive if you have no insurance coverage.

For people with diabetes, these things are well-known but for those who don’t have diabetes, it can be shocking and hard to comprehend.  Diabetes is part of my son’s life.  He didn’t ask for it. He didn’t do anything to cause it.  I breastfed him. I didn’t feed him sweets as a baby. His body, for currently unknown reasons, attacked itself and destroyed the insulin producing cells of his pancreas.

My son looks healthy. He takes part in almost all of the activities that others do with just a few more precautions.  He eats like a normal teenage boy but he carries a jug of insulin with him to do so. He finds humour in the best places.  He is a wonderful young many who happens to manage a life threatening disease on a daily basis.

#IWishPeopleKnewThatDiabetes has never stopped him but has taken a lot of work on both our parts.

#IWishPeopleKnewThatDiabetes has given us stress but also brought us the very best of friends.

#IWishPeopleKnewThatDiabetes is something that no one should have to deal with and I only wish that I could take it away from all of our children.

Thank you again Kelly Kunik for raising awareness in such a wonderful way!

 

Welcome to Diabetes Advocacy’s Newest Feature!

coming-soon

Diabetes Advocacy will be launching a new feature this spring…its own online newsletter!

Besides being able to subscribe the Diabetes Advocacy blog so that you don’t miss any great posts, you can now subscribe to our quarterly newsletter!

Published in May, August, November and February, this newsletter will bring you information on advocacy efforts going on in throughout the country. If you have an event that you would like added, make sure to email us at least 2 weeks before the beginning of  the publishing month.

Subscribe today, share with friends, and let us know what you would like to see in the next issue!

I Miss You Dex!

When my son was with us over Christmas, we were able to try out a DexCom.  As mom, it was AMAZING!! I was completely in love.  Despite a bit of warm up time, it quickly gave us a great overview of how his bg levels were trending.

We instantly knew if we had bolused properly for that Chinese buffet.  We knew if that site change had actually worked. It was heavenly.  At night, I would wake up, peek at the graph and know right away if I needed to get up or if I could roll over and sleep for a bit longer.  I had peace of mind that I had not felt in years. It was a true gift.

My son was less impressed. To him it was another device to wear. It was another thing to carry around. It was another piece of equipment to have attached to his body.  He was not sold on it. It was simply okay but not something that he could see himself really wanting any time soon.

I was sad but my wallet was okay with the decision. Perhaps when he was in the workforce, he would see the benefit. At that point, technology would probably make it smaller and more accurate. At this point in his life, it is completely his choice.

My son was recently back visiting with us again.  We have no DexCom. His visit was too short to warrant trying out the new Vibe or even having him try a DexCom again.  On the first night that he arrived I asked him if he still wanted me to test him at night while he was here?  His answer was a very quick “I’m on holidays. Of course I want you to test me! My meter will be right here for you.”

I was glad to be able to give him a bit of a break and some peace of mind in knowing that he didn’t have to do it all himself.

The first night he was high.  A few bad decisions and a bad site combined to equal terrible readings. As I lay in bed I wondered, should I test him now? Should I retest him? We were at the cabin and he was sharing a room with his brother. I would most likely wake up my oldest son who had to be at work early in the morning if I went in often.  When was the best time to check things out? I struggled. I tossed. I slept in short bursts.

The second night was not much better.  He tested before we both went to bed. His reading was perfect.  He was worried that he was too low for sleep. We discussed his meal choices for the day and I reassured him that he would be fine.  To alleviate his fears, he had some chocolate milk before he went to sleep and only partially covered it with insulin. Chocolate milk has been our “go to” for awhile. It has just enough sugar to boost him and just enough fat to keep things even for a longer period of time.

I woke up a few times wondering if I should test him. Was I right? Were things going perfectly? A trending graph would have been so helpful.  Finally I got up at the time that I had set in my mind to check on him.  He was perfect.  6.1 (110)  Now I was nervous.  Perfect could go either way very quickly.  Was he safe? Would he drop? I wasn’t overly concerned about a spike but would he drop?

I went back to bed reminding myself of the DexCom graph the last night he was here. His nights were great.  He was virtually a flat line for most of the time once he left.  We had made a few small tweaks but nights should be okay. I should  have been able to sleep. I tossed and wondered. Three hours later, I had to check.  Which way had he gone?

He was now 7 (126).  All was perfect. He was fine. He had made it through the night. His basals looked perfect. I could rest and sleep…well except for the fact that the sun was shining and I had to be up for an appointment. image

So It Begins

Mother:  Did you put on a travel basal for the drive? I would guess starting at about 125%. What do you think?

Son: Ummmm, I guess that sounds about right.

Mother:  Translation=Travel basal? Change the basal? Crap! I forgot about that.  Good idea. 🙂

Later in the day….

Mother:  You stopped for a burger and fries?

Son:  Yes.

Mother:  Did you use an extended bolus for that? Remember how much fat we found out was in that meal?  Between the fat and the protein, it can do a real number on your readings.

Son:  You are right.  That would have been a good idea.  I forgot.

3am…

Mother:  Correct.  You are high and your pump says that the battery is low.

Son mumbles and makes the correction:  I don’t have any spare batteries with me. It will be fine. Sometimes it last ages before it dies.

Mother:  Always?

Son:  Well sometimes it dies quick but usually it last ages.

7am the next morning….

Son:  Mom! We need to do a site change!

Mother looking at the tubing on the bed:  It fell out?

Son:  Yep at some point during the night. I guess that’s why I was high. I am surprised though, I thought I would be a lot higher by now.

My son is home for a visit.  His care is now his own.  When he is with me, he has me help with site changes and night time testing.  It gives him a bit of a break.

In no time, it is on my mind constantly–did he test? What is his reading? There is so much to think about with every bite of food.  There is so much to consider before even the most mundane task like driving to visit your mother in a truck.

IMG_3286He has been doing this on his own for a bit now.  He has been living with diabetes for over 15 years.  My heart breaks a little but there is also pride.  His meter is with him at all times…usually carried by his girlfriend but they have it. He is prepared. He takes it all in stride. He is well on his way to being an adult with Type 1 diabetes.