A few months ago I received an email from a person claiming to be a publisher. He wanted me to read a book by someone I had never heard of. I did a bit of enquiring to see if this was for real or they would be later calling asking me to send my bank account information to Pakistan.
It turned out that it was all on the up and up. They just really wanted to send me two of my favorite things--something free and something to read! I gave them an address to send the book and promised I would mention it one day here.
After Christmas and a few personal issues, I finally made it through the book. Please don't think that the book was a struggle. Actually I was pleasantly surprised to find that I really enjoyed it. Making time to read was my personal challenge.
Like any other non-fiction book that I read, I read this one with a check-out receipt nearby. I use the receipt to rip and mark pages that strike me for some reason. This book got eight of my fancy bookmarks. Not bad!
Chuck Eichten provides a very basic explanation of what diabetes is. We have all used the car model whereby we tell people that glucose is the fuel that makes the body run just like gas is the fuel that makes a car run. The book of Better. Life with diabetes can't be perfect Make it better, suggests that diabetes is "as if we sprayed gas all over the car but never opened the gas cap." I thought that was a great visual for people who have no clue.
Mr. Eichten uses humour to get his point across in a wonderful way. He is matter fact about the reality that we are simply people trying to a job we were not taught to do...be a pancreas. We can only do our best and aim for "better".
The book also makes a lot of use of color. Personally that is a problem as well as a positive feature. I love the boldness in such pages as 110, when he notes that "In 1921, the life expectancy of a person diagnosed with diabetes was less than 12 months. In 1922, life expectancy was more than 12 years. In 1921, if you had diabetes you died. In 1922, you lived." The choice of black, white and yellow poses a real problem when you are trying to read at night. Between aging eyes and colored print, I often missed key points due to the frustration of not being able to properly see what I was reading.
I also appreciate Mr. Eichten's pro-pumping take. I personally agree that pumping is the best method of insulin delivery. I love, love his illustration of the number of injections (portrayed by small yellow dots) you would take in ten years versus the small yellow box of infusion set insertions. I like that he notes financial restraints may be a huge hurdle for many. He turns to governments and pump companies to change this.
The book of Better. Life with diabetes can't be perfect Make it better takes a stab at the issue of children with diabetes. I agree with him to a degree. Our children are a lot more flexible than we think. As parents, we are a lot less flexible than we could be. I think that some children still have huge issues with this lifestyle change but again, agree that ultimately children learn from parents. I have always said that my job as a parent of a child with diabetes is to learn all I can and then teach all I can to my son. His job is to use these tools wisely.
All in all the book is great. If you want a touch of humour to give you a kick in the right direction, The book of Better. Life with diabetes can't be perfect Make it better may be just what you are looking for. If you are a little older, I would advise reading the book during the day when natural light is plentiful to get the most out of what it has to offer.
Thank you Jonathan Lazzara for contacting me and thanks to Chuck Eichten for tackling the serious issue of life with diabetes with the right touch of humour!
Last night I was reading a murder mystery novel. The bad guy was lurking outside of a house waiting to break in. It was the middle of the night and he noted that people slept the most sound between 3 and 5 in the morning.
I started to laugh. I wondered if he had made sure that Diabetes did not live in the house first? I am constantly up and prowling around between those times. I have, on more than one occasion thought about the what if... You know, the what if someone was in your house and you ran into them as you were going to test.
The more I thought about it, the funnier it became. If I ran into someone in the house I would most likely have a heart attack. I would be freaked right out of my usual middle of the night stupor that sees me stumble into my son's room praying that I don't have to fully wake and think on a nightly basis. Seeing someone else up in the house would mess with that big time!
I then thought of the intruder who was in my house. The trauma that they would sustain after finding someone wandering around in a house they assumed to be asleep would definitely be significant. Worse than that however, would be the fright that they would receive after seeing me stumbling around with my hair standing on end, no make up, and in my fuzzy red housecoat.
The upside is that the police would most likely easily catch the burglar. I would have shocked him so much I expect he would faint or go screaming off into the night!
Ah the things we can think of in our sleep deprived states.
In March of 2009, I pondered the idea of a diabetes "boot camp". I had mentioned the idea in previous posts as an option for a non-compliant teen but began to think about it in a bit more of a serious tone at that point. I wondered if one could truly create a place for learning that was not a supportive atmosphere but a place for tough love?
So many people think of diabetes as not that big of a deal. We often hear of teens who just can't be bothered. There are people with Type 2 who do not take the disease seriously and there are the adults with Type 1 who are just burnt out and can't get up the energy to fuss any more. Could I create something to help these people had been my question.
Over the years, this remains my most popular post. Comments are still coming in and my mind is still wondering, thinking and inquiring. As some of you know, I am a big supporter of the CWD Friends for Life Conferences. I am on staff at the Canadian conferences and tell anyone and everyone that they should go to a conference. They are vital to many but there are a few who arrive desperate for their child to "get it". They hope that the interactions will be the magic pill that they need for their child to focus and take care of themselves. I wondered if a more harsh approach would be best.
These teens often shrug their shoulders and skip vital sessions. They are not interested in making new friends and block out attempts to get through to them. Would a harsh approach work? What would a harsh approach look like? How could you get results like "Beyond Scared Straight" but for a disease?
What about type 2s? How do you get to them? I think that in some respects they would be easier than teens and in others they would be a lot harder to reach. Someone suggested learning sessions with or without your partner. I think that would be helpful. Adults know that they are going to die. They can be shown that they are putting themselves on the fast track by pretending that they do not have a serious illness.
That leaves adults with Type 1. They know the drill. They may even know what to do but they need a kick. They are living with depression or burnout and they need help. A butt kicking approach could be successful but with a lot of support thrown in once they decide to move forward.
Diabetes boot camps do exist. I have seen a few posted that are directed at primary care providers. There were even one for people living with diabetes but I did not see anything along the lines of what is in my head. What is that? Well its a very fragmented idea at the moment. I see three very different needs. I see the need for specialized experts who are also very caring individuals. I see the need for sponsors to be involved and the support of diabetes organizations. I see exercise as being important but so are many other areas. I see intensity and education balanced with compassion and understanding.
I invite you to re-read the old Boot Camp post. I also would love to hear what you think on the subject. What would you want to see? Do you know people that could use this approach? Could it be virtual or should it be only a physical location(s)? What problems or benefits do you see? Leave a comment or email me. I would love to hear from you as I seriously begin to revisit this concept in 2012.
Despite pretty good A1c's, and a long standing obsession with logging, we have become very slack. As I have allowed my son to take over more and more of his disease, logging has become a thing of the past. He hates to log. Asking him to do it was worse than asking him to clean his room. I knew that he would never, ever, never log when he grew up and moved out on his own so why was I torturing myself?
They say that when you are raising children, you need to pick your battles. For years, I saw this as a very important battle. It had to do with the health of my son. Analyzing trends was important. As I have gotten older and more tired, my perspective has changed. I still look at trends but now I bounce more off of him.
"How are your lunch time readings?"
"Do you find that you are high before going to bed?"
and in return I get...
"Mom, that high before supper was because I just grabbed an apple a half hour ago."
"Mom, I forgot to bolus that bowl of cereal before bed."
"Mom, I think I over guesstimated that smoothie."
This means that I have a general idea of what is going on and then ask if we need to make changes. Now remembering full well that he had five days of "in range" readings over the holidays that included a 28, I only believe him so much. This has led me to rip off the "chicken Thursday" guy and create "Reading Review Thursday". It is the day when my son has to pass in all of his meters and we review. I have a piece of log paper. I do the logging (its a lot less painful that way). When I see bumps, I ask questions and look at his pump.
I have "Reading Review Thursdays" marked on my calendar so that I don't make it "Reading Review...someday". We have to get back into some habits. I have to continue to use these times as teaching moments so Thursday it is! Now let's hope I can stick to it!
This morning I read a post about an adult who was suffering with depression and struggling to keep his diabetes in check. He knew what to do but just could not always bring himself to do it. The post really struck a chord with me.
As a parent of a teen with diabetes, I don't have to remember to test before and after every meal or intensive activity. I don't have to remember to bolus for every meal. I don't have to watch my pump for reminders of site changes, low cartridges and low insulin. I do not have to carry around constant reminders of my diabetes.
My son leaves the house and takes diabetes with him. When he sleeps elsewhere, he is in charge of his own care. I technically get a break. I still think about it. I still count the carbs in a meal out of habit. I will still keep an eye on dates and ask about site changes. I will look at trends and deal with adjustments. I get tired and yet I am not the one living with diabetes 24/7. This scares me.
My son came home a few days ago after spending time with his father and other family members. He didn't change his site. I avoided looking at his meter until later that evening. He had come home alive. I did not want to ruin our reunion if things were not as they should be...and they weren't. When I finally scrolled through the meter that he used, I found times that he went over 12 hours without testing! The readings that were all "in range for the most part", included a 28 (504).
I was too tired to scream despite having just had five days away from diabetes. I was too tired to fight about it. I read through the readings aloud. I asked him if he had used another meter because there were a LOT of missing readings. He gave me his usual look of "of course I must have used another meter because I would never do something like totally neglect myself just because you were not there to remind me." I knew otherwise. He knew I knew. I walked out of his room.
If I can get this tired, this frustrated, this worn out after 11+ years and its not my disease, how do those living with it handle it? How can we not expect depression? How can we not expect burnout? We can't.
We can only offer help and be there to lean on. My son has been able to bolus on his own for many years but there are still times when he hands me his pump after a meal. He has been doing his own site changes since he was at least 11 or 12 but he still calls me in now and then to do them. I am okay with those breaks. He knows what to do but some days its just nice to let someone else deal with it. I hope I can continue to do this for him...not forever but whenever we are together. Hopefully it will help when he has to battle his own diabetes demons.
We all know the many reasons that people like myself test their children's blood glucose levels at night. There is the fear of dead in bed, the desire to "know" what is going on in their bodies, checking basal rates, making sure an infusion site is working, checking on the result of so much activity during the day and many, many more.
This Christmas I discovered yet another reason to test at night...the turkey!
Yes, the turkey. In this part of the country, a large holiday meal is usually served at noon rather than in the evening. This means that if you are having a turkey of any size, it needs to be put into the oven long before normal people get out of bed for the day.
We were having all of our children over to eat. This bird was going to have to see the oven long before daylight would be arriving. As I thought about having to crawl out of bed during the wee hours I was less than thrilled but then I remembered that it was okay. I had to be up anyway! I would kill two birds with one stone, in more ways than one!
With both of my boys home, I knew that they would have been up late so I did not have to be up too early to test. Four in the morning would be fine...and it was! I got up, tested my son and he was perfect. You know that perfect that makes you wonder if he will drop or be okay? Lucky for me, I had a bird to stuff and get in the oven. I did just that and then went back to retest him. He was fine. I could sleep for a few more hours before the Christmas mayhem began.
You have to take the benefits of diabetes where you can. This holiday season that one worked for me!
Our Christmas break is over. I enjoyed a wonderful holiday with family but all good things must come to an end. Today I picked up my son from the airport. He had spent the New Year with his father.
As with every trip, I packed extra insulin, test strips, and infusion sets. I added alcohol swabs and extra insulin cartridges. He had his cell phone and as was our routine, he would be able to check in with me by text or a phone call. He was set for his time away.
Once again, his cell phone quit working within a day of his arrival. I really need to get him a new, more reliable phone. I asked his brother to make sure that he called me after a few days. He did. He swore his readings were all pretty good. He had handled a low but all was fine. I reminded him that he was due for a site change. He was going to do it right away....or so he said.
This morning, as he sat at the table, I noticed his site was still in his arm. I looked a little closer. There was tubing attached. It was red. He had not changed his site! This was the same site that we had put in before he went away! I could not believe it.
My son swore that the site had been working fine. He was running high today but it was the first time. I did not even want to look at his meter. If he managed to forget his diabetes enough to ignore site changes, how often did he forget to test? I have to remember that he is still young. He still has a few years left before he has to do this without his mother looking over his shoulder. Thank heavens for small favors!
