The weather outside is frightful! The temperatures are dropping and we are in the midst of deep winter cold. Managing to stay warm can be a challenge on days like these. How do you manage your diabetes as well? Here are a few things to remember…
Insulin is liquid. It can freeze. Make sure not to leave insulin in your car. When you are outside, keep it close to your body. This also means that if you are pumping, make sure to tuck your pump close to your body to keep things running properly.
If you think your insulin has been froze, throw it out! Don’t take any chances. It will not work as efficiently once the proteins have been frozen.
That means keeping your diabetes devices warm as well! I just told you to keep the insulin in your pump warm, but did you also know that your pump (like your phone) also needs to stay warm? Keep your pump and CGM under your winter clothing and as close to your body as you can.
If you are using a tSlim pump, watch for the low temperature warning on the pump. This will tell you that your pump is not functioning as it should because of the cold.
Check your blood glucose level.
I know, you normally check but when it is cold out make sure that you still check…a lot. Some people see their bg levels rise in the cold weather while others see it go up. Don’t guess or go by how you feel–check then adjust with food or insulin.
Before you check, make sure that your meter is warm as well. Glucometers function poorly below 40F (4C). If you feel that your glucometer could be too cold, warm it in your armpit for a few minutes. It will quickly return to a functioning state.
Keep your hands warm.
It can be hard to check your blood glucose levels when fingers are cold and blood isn’t circulating properly. Keep your hands warm and toasty to help making finger sticks a bit easier. Wear warm gloves. You may want to consider using mitts that have removable fingers to make it easier to check .
Carry glucose that won’t freeze.
Juice packs are a handy way to treat lows but when you are playing in the snow, glucose tablets and granola bars are probably a better choice. Also make sure to keep your glucagon warm and safe. Frozen glucagon will be as useful as frozen insulin.
Winter activities can be fun but make sure you are prepared. Follow some of these few hot tips and enjoy your time in Mother Nature’s deep freeze!
Its summer!! I mean it really is finally summer! Some areas have been enjoying great weather for a bit but where I live–well, I kind of wondered if summer was ever going to show up. Now that it is really here, let’s talk about a few tips for managing diabetes in the summer months.
Keep your insulin and test strips cool.
Summer heat can literally ruin blood glucose test strips and insulin. If you are on injections, make sure to keep your insulin stored in a cool place. If you are pumping, again, make sure that your pump doesn’t get overheated. You may even want to consider changing out your cartridges more often to ensure that your insulin is fresh and hasn’t been compromised by the heat.
Test strips also react to extreme temperatures. Again also make sure that they are stored in a cool place. If you are traveling to the beach or theme parks, you may want to invest in a FRIO Insulin Cooling Pump Wallet. They are convenient little cooling packs that will help to keep things chilled.
If you don’t have access to Frio packs, another great suggestion is to use frozen juice packs. You can keep your supplies cool and are prepared for lows!
Mastistol and Antiperspirant are pumpers’ new best friends.
Summer often means swimming and swimming can mean chlorine. Chlorine can bring extra headaches for people with diabetes using an insulin pump in the summer. Personally, the only way for us to keep sites on in chlorine was by making sure that a product like Mastisol Liquid Adhesive was used on the skin prior to set insertion.
For people using an insulin pump and/or a CGM, you may also want to look at using an antiperspirant on the site. Apply a light coat of antiperspirant (not deodorant) to the insertion site area. This will help to keep sites in place when your body begins to sweat!
Have snacks everywhere.
Summer heat can bring its own challenges for managing diabetes. It tends to mean more exertion and rapidly dropping blood glucose levels. Make sure to carry extra snack foods with you wherever you go. One parent suggests that you stock up on Freezies. They are perfect treats for lows and also help ward off dehydration. Other families have suggested fruit and frozen grapes as must have snacks for on the go.
Drink lots of water.
Dehydration is a real problem in the heat. It is especially important for people living with diabetes to stay hydrated because dehydration will cause blood glucose levels to spike.
Heat, exhaustion and the fun of the sun can really mess with blood glucose levels so make sure that you test often to avoid any serious diabetes related emergencies.
As I have said, infusion sets can fall out. Blood sugar levels can go crazy. It is vital that you carry extras of everything–extra snacks, extra water, extra test strips, extra insulin and extra infusion sets just in case.
I know, everyone is supposed to wear sunscreen so really is this a diabetes issue? Well no…and yes! It turns out that sunburns have been known to really mess with blood glucose levels. The moral of the story? Stay hydrated and wear sunscreen to help keep blood glucose levels in check.
Finally, in Canada especially, we just don’t seem to see summer for long enough so plan ahead and enjoy all that this summer has to offer you and your family!
If you have cancer, you are usually met with sympathy and compassion. A person diagnosed with heart disease is met with care and concern. When people find out someone has diabetes, the first reaction tends to be blame. What did the person with diabetes do to cause this condition? What have they done to have an A1c that high? Have you ever wondered what would happen if people with diabetes weren’t constantly subjected to blame and criticism?
Think about this….a woman goes into her doctor’s office and is told that she has breast cancer. What does her doctor do after breaking this news to her? Can you picture how her friends and family will react? Most likely the doctor offers support and treatment options. Her family will offer to assist her in any way that they can. Everyone offers sympathy and hope.
Next imagine what happens when a man walks into his doctor’s office and told that he has congestive heart failure. What does his doctor do? How how does his family react? Again, treatment options and hope are given we can be sure.
Now consider what happens when diabetes is the diagnosis…. A family walks into a doctor’s office. Their son hasn’t been himself lately. He is lethargic. He is drinking everything in the house and consequently is suddenly having accidents and can’t seem to hold his water. They know that something is definitely off.
The doctor tells them that their son has Type 1 diabetes. She asks if there is a family history of diabetes? She gives them a brief rundown of what diabetes is. The doctor provides a prescription for things like insulin, syringes, and blood glucose test strips. No treatment options are discussed. The doctor then tells the family that they will have to go immediately to a place called “diabetes education” for a bit more training.
The stunned family is pushed out of the door and heads to the next office. They are reeling. They don’t understand what they have been told. The poor family knew nothing about diabetes before this day. It was something that came from eating too much sugar but they didn’t feed their son sugar…did they?
The family has been told that they will have to inject their child with a syringe multiple times per day. The doctor has told them that if their son gets too much insulin, it is an emergency and he could pass out and die. They have been told that he currently has too much sugar in his body and he needs more insulin or he may got into a coma and die.
The doctor did asked them if there was a family history of diabetes. Now they wonder again if they caused this. Did they do something wrong? Did they pass on faulty genes to their baby?
This newly diagnosed family goes to diabetes education and learns all they need to know about diabetes in a few hours. They are told about carbohydrates, insulin, exercise and many more terms that are floating around meaninglessly in their heads. The family is overwhelmed and exhausted.
As the news of the young boy’s diagnosis reaches family and friends, well-meaning friends reach out and contact the family Their aunt tells them that their great-uncle had diabetes…the bad kind….he died. A neighbourhood child asks your son if diabetes is contagious because he is worried that he might “catch it” and then have to have needles too!
Can you see the difference in these three scenarios? In each incidence, the diagnosis is earth shattering. The people involved in all three stories are forever changed but in the first two cases, they are met with compassion and care rather than being the butt of jokes. When diagnosed with something other than diabetes, the individual does not seem to have to educate or correct misconceptions from family and friends.
Now imagine this…the same family meets with their doctor. She tells them that their son has diabetes. It is a serious life-threatening disease but working together, they will ensure that he will live a long and healthy life. She tells them about amazing treatment options and offers them numerous online resources.
A diabetes team comes in bring with them another family who also has a child with diabetes. This family will act as mentors for them. The parents will be able to share their fears and experiences and the children will be able to also share with each other. They will guide them to other supports. The family knows that they are not alone. They know that they will make it through.
Further imagine this family going home after insulin guidelines are established but they don’t come home to judgement and fear. Instead this family walks in the door to find that their neighbours have prepared meals with carb counts so that Mom and Dad can focus on their family. They see that Grandma has arrived to help out and learn diabetes care so that their son can still spend his summers with her.
The is way diabetes should be handled–with compassion and care. It does happen. There are some incredible diabetes teams out there. There are amazing people who understand and don’t judge.
Wouldn’t it be wonderful if this was the rule not the exception? Can you imagine if there were no more diabetes jokes? No more comments about Great Aunt Sarah dying from the bad kind of diabetes? What if parents no longer threatened their children with “if you eat one more of those candies you are going to get diabetes!”
That would be compassion in its purest form. It would allow families and individuals to deal with this new way of life with much more support and love.
It can happen but it takes work. We must continue to educate the general public. Educators and doctors must continue to offer compassion and support. It is important that those of us who live with diabetes constantly remain available and understanding towards those who are just learning about life with diabetes. Together we will create more compassionate resources for those with diabetes until there is a cure.
A month or so ago, I came across this really interesting looking meter. I sent my son the link and asked “what do you think?” His response was, “I need one. You should get me one.”
I laughed. I don’t exactly have the power to get him every new meter that comes out as easily as I once did. Back in our earlier years of diabetes management, glucometers were pretty basic. Asking a rep for a new meter was not a big deal because they wanted your test strip business. Today many meters are now small computers. They analyze trends and do all sorts of tricks. This means that they cost a lot more money than they once did.
Cost or not, a new meter in our little world of diabetes has always been a big deal. Needless to say, I was really excited when I received the press release from Auto Control Medical stating that they were launching the meter that we had looked at! Auto Control was the distributor for many great diabetes tools like the Cozmo insulin pump and the Cleo infusion set. It was therefore not surprising to see them involved with another cool innovation.
After a few emails, I was able to set up a time to chat with a representative from Auto Control and get the details on this new toy glucometer.
According to the press release, “the Dario Diabetes Management Solution is a compact all-in-one system that helps people with diabetes monitor blood sugar levels and proactively manage their disease using their smartphone or tablet…Approved by Health Canada, Dario connects via headphone jack to turn a mobile device into a glucose monitor, and comes equipped with a lancing device and test strips to take blood samples on the spot. It provides the diabetes patient’s real-time and historical blood glucose data to spot patterns, recommend treatments and support behavior changes. Its web interface also makes it easy to get upgrades and share health information with healthcare providers and loved ones.
As an all-in-one system, Dario combines a lancing device to obtain a blood sample, a proprietary disposable test strip cartridge with 25 strips, and a glucose meter that’s driven via the user’s mobile device. Unlike conventional glucose monitors, there is no carrying case or batteries to replace, and the system works on both Apple and Android devices.” You can see why I was excited about this new technology!
After speaking with the Auto Control representative, my enthusiasm didn’t wane. Not only was this meter compact, like my son’s beloved iBgStar, but it would not become obsolete or require me to search high and low for new adapters when he upgraded his cellphone. Dario’s patented technology allows the user to plug the meter into the phone jack and you are good to go!
The Dario offers data sharing (great for nosy parents like me!) and is extremely feature rich according to Auto Control. I was told that app updates will make this meter much more customizable than the competition. By updating software through apps, the meter should also have more longevity and not become obsolete before you have finished the first 100 test strips. I haven’t had a chance yet to download the myDario apps yet but I was told that users are free to download and play even before purchasing the meter.
Yes, you do have to purchase the meter but again, the meter is less than some comparable products. The current retail price is $39.95 but some short-term offerings are being made to help reduce the cost. Please check with your pharmacy or www.mydario.ca for the exact details.
The Dario diabetes management tool has a meter, lancing device and 25 strip container in one small location. It uploads to most smartphones and offers detailed carb counting applications similar to those found on some smart insulin pumps. It has a standard warranty program and offers replacements on a case by case basis. The meter and test strips are covered by most private insurance companies and will be added to provincial formularies in the coming months.
The next step for us will be to test it out in the real world. My son got his wish and will be having a Dario delivered to him in the coming weeks. I have told him that I want a full review from him on what he thinks about this new meter. I will also be downloading the app from the MyDario site and seeing what I think of things from that end. I love new diabetes toys!
This was a project that was privately funded and motivated by a father’s love. There was no political agenda to hold things up. There was only his passion and desire to see his son safe when he could no longer be there to watch him at night. His drive pulled at my heart and for the first time gave me hope.
This summer, clinical trials are continuing. More adults are getting to experience life with the bionic pancreas. More children are getting to experience it as well. According to the latest video, they are now reaching the stage to change the design making things more streamline. This is moving quickly to become a reality!
Being me, and spending so many years advocating for access to better treatments regardless of income or insurance coverage, I can’t help but wonder what direction this project will take. To me, and I am sure to Dr. Damiano, this device is the diabetes equivalent of a pacemaker and should come under the larger umbrella of our health care system making it available to everyone who is insulin dependent.
At this stage, they are far from knowing how things will proceed in terms of distribution. We will have to wait. While we wait, I will continue to work to see access to insulin pumps and CGMs for all people with diabetes regardless of age. I will continue to put money into my son’s RDSP just in case he does have to purchase the system out-of-pocket to begin with. If need be, we will advocate for access for everyone to this life changing technology but for now, I will watch and cheer from the sidelines. I will hope that this will be the technology that changes the life of my son and all of our children with diabetes (no matter what their age).
Ginger Vieira recently released her third book called Dealing with Diabetes Burnout, How to Recharge and Get Back on Track When You Feel Frustrated and Overwhelmed by Diabetes. I was once again lucky enough to be given a copy of the book to read. As I prepared to write my overview of the book, I took a glance at how many pages of interest I had marked off. A lot! That means that this was a wonderful book with many excellent points for me to share!
I really wasn’t sure what to expect when I began reading this book. What would I learn? Would much of it apply to me? Who would this book fit? Well, I learned quite a bit. I gained a new perspective and I can think of quite a few people who this book would help. Most importantly however, it is a great hands on resource for people who live with diabetes–Type 1 or Type 2.
This book doesn’t just give you a bunch of information and feel good stories. It is filled with exercises and activities that Ginger challenges you to do to help you deal with your own diabetes burnout. She doesn’t chastise you for the fact that “I haven’t checked my blood sugar in three weeks (ehh…months)” –a fabulous title of one of the chapters of the book. Instead she reminds you that you are being asked to manage something that your body is supposed to do on its own based on a variety of other physiological and hormonal processes. (page 21). She tells you to look at all of the great things that you are doing and praise yourself for the one thing you are getting right. “developing the ability to step back and see what wasn’t working–rather than blaming yourself–is the trick to creating a new plan that will lead you to your goal.” (Page 33)
This theme is further emphasized by all of the great chapter titles like “I want to be perfect by tomorrow (or I’m giving up!) where Ginger notes that some times are not ideal for change. She suggests that you create your own personalized “pick up plan” to help you refocus in times of stress.
Ginger offers tips on how to handle support from well-meaning people who really don’t get it as well as how to best make use of people who do get it and do want to help. She shows you how to use technology to make your life a bit easier as well as great real life tips for those of us who would just like to live a healthier lifestyle but find ourselves giving up too soon.
Being a parent of a child with diabetes, as I began to read this book I felt horrible. I was a failure. I was the parent who struggled to understand how you could “forget” to do something that you have done all of your life. Did I push too hard? Should I have been calmer when his doctor praised him for testing more than once per day and I was looking to see 8-12 readings per day? I was sure that I had totally ruined my son’s childhood.
Thankfully I got some reprieve from my incredible guilt when I moved into the chapter called “Crazy Little Thing Called Love”. Here Ginger talks about raising a child with diabetes and how truly difficult it is to do. She highlights many of the fears that we have. The torture we go through when our child is low and disoriented or the failure we feel when they are high and we are positive that we alone are responsible for the kidney damage they may one day have. She offers more wisdom and options to dealing with our children and how to get through to our teens. I was left knowing that I hadn’t scared my child completely…well at least not in that realm.
Nearing the end of the book, I came across one of the very best quotes I have ever read on the issue of diabetes care and one that should be framed and read by everyone dealing with this disease (especially us guilt laden parents)…. “Doing the best any of us can do in life with diabetes does not have to mean perfect blood sugars all the time. Sometimes our best is awesome and sometimes it’s not quite so awesome but it’s still our best in that moment. And that’s okay. It has to be, because “perfection” is a crazy expectation.”
Dealing with Diabetes Burnout is a fabulous resource. If I had one criticism of the book it would be having too many personal stories illustrating various points in the book. Reading through page after page of examples of other people’s burnout was taxing on my incredibly shrinking attention span. That said however, I have no clue as to how I would have cut back on some of the submissions that were used. They were often very powerful stories that needed to be shared.
Who should read this book? Anyone living with diabetes because as Ginger Vieira notes, at one point you will go through some form of burnout. To a lesser degree, parents of children of diabetes (no matter what age your “child” may be). This book will give you insight into the emotions that your child may be dealing with and will also give you a few tips to help you in your own life as well.
I often get requests from people who want to share a post on my blog. They want to write about how to cure your diabetes by eating their miracle food. They want to tell my readers all about their awesome socks that will instantly cure all that ails you and things that you didn’t even know were ailing you. Once in a blue moon, someone will send me something relevant and I will think about posting what they send me.
A few weeks ago I received a request from a woman who wanted to promote her greeting cards. My first thought was…wow! She called me Barb and not “Dear Advocacy”. I decided to read a bit further. They had a really interesting concepts, they were cards for people with diabetes but they weren’t stupid. They were actually kind of cute. Enough from me on the subject though….
I’m Nene Adams and I’m an insulin dependent Type II diabetic. I’ve also been a greeting card designer since 2007.
Following a stay of several weeks in the hospital for a diabetes related medical problem, I was inspired to do some research into diabetes. I learned a lot, including the fact that there seemed to be very few greeting cards designed specifically for diabetics.I thought there needed to be more and better choices for a group of people the mainstream card retailers were ignoring.
Me and my partner, Corrie Kuipers, have teamed up with a few other talented artists – Doreen Erhardt, Betsy Cush and Sharon Fernleaf – to create a line of greeting cards for children and teenagers/young adults with diabetes. The messages are positive and supportive, not just a generic “get well.” The images are colorful and often humorous in each artist’s distinctive style.
We hope these cards will help inspire and encourage diabetic kids and their loved ones. http://www.greetingcarduniverse.com/get-well-feel-better-cards/diabetes
The other day, I sat down to begin reading Ginger Vieira’s new book “Dealing with Diabetes Burn-out“. I had only read the introduction when I wanted to cry. Why is there so much judgement surrounding diabetes? Why do people living with diabetes feel that they are either good or bad? Well, as Ginger points out, its because there is so much good and bad mentioned when talking about the disease.
Your readings are good or bad. They are not the result of a carb counting error or a pending illness that you cannot foresee. They are a good reading or a bad one. The food you eat is either good food or its bad and a diabetic shouldn’t eat it. Your A1c when you see the doctor is either good or bad.
The constant judgement does not end there. I was listening to a conversation a few weeks ago and quietly cringed as I heard someone mention that a person had diabetes “really bad”. Another person had mentioned that someone had died because they had the “bad kind of diabetes”. I wanted to say that there is no good kind! You can only hope and pray that a person with diabetes has all of the knowledge, supports and tools that they need to care for themselves in the best possible way. It wasn’t my place to educate at that time.
The good kind I assume, is the kind that is managed by diet and exercise but is it really that good? You still have to live with guilt for each piece of food that enters your mouth. You must be constantly wondering when that bullet will hit its target and you will get the dreaded sentence–”You have the bad kind of diabetes”.
What is the “bad kind of diabetes”? Is it when you have to have needles? Is it when you are on pills? Is it when you are overweight? Is it when you are two and don’t know why you have to be stabbed and poked at all of the time? Is it when you have to be hooked up to a machine 24/7? When does it become “bad”?
Personally, it is always bad. In all of those cases, our bodies have rebelled against us and are not working as they should. We have to fight and struggle to compensate. Using insulin actually can make it easier not worse. Modern insulins allow people with diabetes to be able to match insulin to food amounts in a way that their body, without insulin, can’t. That’s not such a bad thing. It allows them to have that piece of chocolate cake without concern of a crazy high a few hours later.
This distinction between “good and bad” actually has a negative impact on treatment as well. While insulin injections or insulin pumps are not an option for a person living with Type 1 diabetes, it is often seen as a last resort for a person with Type 2 diabetes. Sadly this is not the case. Studies have shown that giving a person with Type 2 diabetes insulin earlier can actually preserve some of their beta cell functioning and make their lives a little easier. Unfortunately, that “good and bad” issue stops that from happening. People fear that they will be “bad” if they are on insulin. This further translates to the thought that those who live with Type 1 diabetes and need an external source of insulin to keep them alive must have it “really bad”.
I thought about other diseases and wondered if any others have it “bad”. Cancer has stages. Diseases like MS are referred to has having “full blown MS” versus the early stages. I could not think of any other disease that allows people to have the “good kind” or the “bad kind”. Is it the lifestyle component but if it is why do we not hold that same standard for other “life style” related diseases? Is it because in the other diseases they understand that lifestyle is only a small component? People will say that Type 1 diabetes is NOT a lifestyle related disease but that does not stop the public from blaming the lifestyle of the mother of a person with diabetes. We are blamed for things like not breastfeeding long enough and other equally ridiculous notions.
What is the answer? How do we fix this? I don’t think that there is a quick fix. I think that we continue as we have been. We educate people who ask us if we have the “bad kind of diabetes”. We work with the media when they try to get it right. We are kind but firm with those people who are ignorant of the facts because we may have once been ignorant as well. Finally, we find a cure so that no one ever again has to be judged because their body has failed them.
Yesterday we opened up about how diabetes can bring us down. Today let’s share what gets us through a hard day. Or more specifically, a hard diabetes day. Is there something positive you tell yourself? Are there mantras that you fall back on to get you through? Is there something specific you do when your mood needs a boost? Maybe we’ve done that and we can help others do it too? (Thanks to Meri of Our Diabetic Life for suggesting this topic.)
Is there a mantra that I fall back on to get me through a hard diabetes day? Absolutely! It is one that I share with newly diagnosed adults and parents who are struggling to get through. I remind them to look at life in four-hour blocks. If you take everything in four-hour strides and you can ride through anything.
When diabetes seems to be kicking your butt every morning, look at how things are going between lunch and supper. Are things okay? Give yourself a mental high-five and celebrate that victory rather than dwelling on the post-breakfast spike that this threatening to drive you over the edge.
Do overnights seem overwhelming? Again, break it down. How are things from snack until 12 or 1am? What is life like in the deepest part of the night? Are things settled before breakfast or has chaos been awakened in those four hours? If you break it down into six four-hour periods, life becomes a bit more manageable and instead of seeing all of the bad, you can savor some of the good.
Why do I have a four-hour mantra? Because early on I learned that my son’s Humalog was supposed to last about 4 hours. He was injected at 8am for breakfast, then at noon for lunch, around 5pm for supper and then again at 9pm for his nighttime snack. I was going crazy trying to see a perfect 24 hour day. I realized that looking at a complete day was never going to make me happy. The only way to see success was to look at small chunks of time. Coincidentally, that was also how we would make changes to his regimen. Was his breakfast ratio of carbs to insulin off? How about at bedtime? Life was naturally being broken down into 4 hour chunks for me so why not work with that?
Now I know some of you will say, but we are using a pump so that won’t work for me. Yes it will! Chances are high that you are still doing things like having breakfast, lunch and supper. You are probably still going to bed at one point as well. All of these events can be broken down and again my four-hour mantra applied. Was I a successful pancreas this afternoon? Yes? AWESOME!! Let’s break out the happy dance!!! Did I have an issue after supper? Okay, let’s look at what can be done.
Life is less overwhelming in four-hour shots. It can be applied it outside of diabetes as well. Are you wanting to change your eating habits? Did you have a great breakfast? Pat yourself on the back. Over did it at lunch? Do better tomorrow. Can you see how easily this works?
Life can be overwhelming. As we discussed yesterday, life with diabetes can make it worse. Taking life four hours at a time has allowed me to focus on what I need to change and to praise myself when I get it right…and we all need a lot more praise in our lives.
Back to it. Back to that new normal life…where diabetes isn’t in it 24/7. It is still strange but this past week with my son was also a bit of an awakening. One in which perhaps more people should be exposed to. My son was diagnosed with Type 1 diabetes over 14 years ago. He lived with me the bulk of that time. In September he chose to move to finish high school with his lifelong friends. It killed me inside but it was a choice that he had to make.
In the past six months, I have not had to get up in the middle of the night to test bg levels, but I still wake up. I haven’t had to worry about site changes but I still am in charge of ordering supplies. My role has changed. It is still taking some getting used to.
I was thrown back into the fray last week. Diabetes came back into my life in a huge way. It gave me a new respect for my son and for all people with diabetes. It brought a new pain to my heart. I wished that others could have seen what I saw and experienced what my son experienced. Perhaps if more people did, then more doctors would fully get it. Perhaps if more people did then more politicians and insurance companies would understand. Perhaps then more research projects would be funded and there would be a greater understanding and drive for a cure.
My son arrived on a Monday after a 10 hour day of driving. He was high. I asked him what was up. He explained. “I should have set an increased basal rate to cover all of that inactivity driving in the truck. I ate at a fast food restaurant but the meal I chose wasn’t too high in fat. I may also need a site change.”
I looked up the meal that he had eaten. It was a lot higher in fat than he had thought. We discussed extending boluses to cover those high fat meals. We talked formulas and I hoped that he might remember the concept the next time he ate out.
Because of those small oversights, he was high for the rest of the evening. He went through gallons of water and found it hard to socialize when he was spending so much time in the washroom.
His visit continued this way. There were highs. There were logical reasons for them. There were mistakes made. He is only human. Together we worked to fix them. There were injections and new sites. Sites fell out and got kinked. There were replacement sites and more injections to cover the missed insulin and bring him down. There was more water. He spent more time in the washroom.
I was exhausted. He took it all in stride. We discussed strategies. I suggested changing sites a little sooner when he was having highs. He told me that when he got too high he felt a burning in his legs and after a bit he would smell a strange smell. He said it was like his brain was frying because he was so high and he would smell it happening. My heart broke. After days of “stuff happening”…a bad site, a poor carbohydrate calculation, a bolus delivered wrong, we finally saw him in range for longer than an hour. He was able to sleep through the night without a trip to the washroom every half an hour. He was able to put down the water bottle and enjoy a casual glass of diet Dr. Pepper. The battle was over and he had won. The war would continue another day however.
As he got on the plane for his trip home, my hands-on role ended. I was no longer in the trenches with him until he had another break and came to visit. That was not the case for him. His battle would continue on the plane where I learned after he landed, that the air pressure of the plane would impact the insulin delivery on his pump. Once again, after the fact we would know the reason behind a high or low but were at that point powerless to stop it. We hadn’t known.
How stressful must this be for a person living with diabetes? My son told me how his doctor lectured him when he goes to his appointments (although I am guessing that the bulk of his lectures are just). He stated that he the CDE he was sent to was more concerned with reading him documents than teaching him something useful. He is just beginning his journey of learning to be his own advocate.
As much as I complain about his lack of self care. Each time we talk, I am amazed at how much he does know about his own care. Some of the information he has heard from my lecturing and teaching, as well as the things he has learned at CWD conferences has sunk in. He is a teen and may not always do what he is supposed to but he does have the knowledge when he chooses to apply.
It will be up to him to apply the knowledge. It will be up to him to show his medical team that he is very educated in his care. It will be up to him to decide to take care of his body. It is a huge challenge. As people who do not have diabetes, it can be easy for us to judge and demand better. It only makes sense to take care of you. You will feel better. It’s not always that easy. Stuff happens.
This week was exhausting and I didn’t have the physical toll that he did. I was the coach on the sidelines, offering help when I could. I made suggestions, I took over care, I carried a small amount of the burden but he carried the bulk of the weight.
I could see him sitting in a meeting with his diabetes team and having them see this past week’s readings. There would be questions. Would he feel defensive? I would have. Would he feel judged? I would have. Did he do his best? Yes. Do the numbers look like it? No…and yes. Readings were high, but then we had a victory and things came down…before the next stumble and up they went. Should we have known better? Yes…and no. Yes, he knows to increase his basal when traveling but no he didn’t know the carb counts for some of the restaurant foods. Even with calorie counting software, errors were made. How could we have known that the site that went into his leg would bend—twice? There are so many factors going into managing diabetes. Even for those of us who have lived beside someone for 14 years, we can’t fully understand.
As a parent it is torture. I want to fix this. I want to take it from him. He doesn’t ask me to. He knows that I will do my best. When he stumbles or appears not to take care of himself the way that I would like to see, I get upset and even angry. I understand the toll that it can take on his body. I know the toll that a causal attitude will take on him long term. I know that he has the knowledge and I pray he will chose to use it sooner rather than later. I don’t always remember the struggle to balance being a teen boy and being a person with diabetes however. It has to be hard.
I won’t quit demanding the best from him. I won’t be able to stop being disappointed when I don’t see adequate testing. I will take this week and use it as I go forward however. It has been a great lesson to share when advocating for better care for people with diabetes. It has given me a new respect for all that my son deals with when Mom isn’t there to carry some of the burden. It has reminded me of how much diabetes sucks and how despite the fact that a lot has changed in 14 years, we still have a long way to go.