Wednesday, July 8, 2009
Moved.
This blog has been moved to the original address of http://www.type1demystified.org. Please check us out there.
Monday, July 6, 2009
Never any easier.
No matter how long you've had Type 1 diabetes it does not get any easier.
Living with Type 1 diabetes is like running the marathon that will never end. You can get drinks along the way, maybe a snack, bathroom break, and take it down to a slow jog, but in the end you just keep running and running and running and, unlike other marathons, in this one there is no finish line.
People living with Type 1 diabetes do get more accustomed to the daily rituals. They know they have to check their sugar before every meal, in between large lengths of time between meals, and usually once in the middle of the night. They also know they must give insulin with every meal and snack and every out-of-range high number. They know how to pack their ridiculously excessive but necessary travel bag for trips as short as to the mall. They pack their glucagon, fast acting sugar, extra insulin, extra pump supplies (if pumping), extra syringes, small protein snack, blood glucose meter, extra strips, and their emergency contact list. If you're exhausted just reading this list of daily, sometimes hourly, rituals, imagine how a person living with Type 1 feels. If there is anyone in this world who should scream, "Enough already!" is the person living with Type 1 diabetes.
When our babies get diagnosed with Type 1 diabetes the rituals that come with living with it do become part of their life. My son sticks his finger out whenever he hears the beep of his glucose meter, even if I am just rereading his number. At every single meal, my son asks, "Can I start eating?" or "Did you test me yet?" before he even picks up his fork. My son orders a diet coke at the pool club with a rehearsed spiel of, "Can I have a diet coke? You need to make sure it is diet coke because I have type 1 diabetes." He is only 5.
Imagine 15 years from now. He may grow tired of these rituals. There may be a time when he just doesn't want to check his sugar, or he doesn't feel like packing that supply bag when he takes his girlfriend to the movies. It is not going to get easier, it is going to get more and more overwhelming. You know yourself, if you've had a hard day at work, you may skip something that you normally do because you are so tired. Maybe you skip a shower that night, thinking to yourself, "Ah, I'll shower in the morning." My son won't have options like that when it comes to his diabetes care. He won't be able to say, "Ah, I'll check my sugar in the morning, or I'll take insulin when I wake up." If you don't shower, you will wake up dirty. If my son doesn't follow his rituals, he may not wake up. Period.
An adult very close to me has Type 1 diabetes, and this is what she said about getting used to living with it. She said, "I've dealt with it for 7 years and for real I think it gets harder because in the beginning you do what you have to do and then there are times, years later that you realize there is a ball and chain that you can never escape and you realize how much of your life revolves around it. It sucks."
If anyone deserves to yell at the top of their lungs ENOUGH ALREADY it is the people living with this disease every day. Next time you are inclined to tell a person recently diagnosed with Type 1 diabetes that it will get easier. Think of that never ending marathon, and just give a hug of support instead.
Living with Type 1 diabetes is like running the marathon that will never end. You can get drinks along the way, maybe a snack, bathroom break, and take it down to a slow jog, but in the end you just keep running and running and running and, unlike other marathons, in this one there is no finish line.
People living with Type 1 diabetes do get more accustomed to the daily rituals. They know they have to check their sugar before every meal, in between large lengths of time between meals, and usually once in the middle of the night. They also know they must give insulin with every meal and snack and every out-of-range high number. They know how to pack their ridiculously excessive but necessary travel bag for trips as short as to the mall. They pack their glucagon, fast acting sugar, extra insulin, extra pump supplies (if pumping), extra syringes, small protein snack, blood glucose meter, extra strips, and their emergency contact list. If you're exhausted just reading this list of daily, sometimes hourly, rituals, imagine how a person living with Type 1 feels. If there is anyone in this world who should scream, "Enough already!" is the person living with Type 1 diabetes.
When our babies get diagnosed with Type 1 diabetes the rituals that come with living with it do become part of their life. My son sticks his finger out whenever he hears the beep of his glucose meter, even if I am just rereading his number. At every single meal, my son asks, "Can I start eating?" or "Did you test me yet?" before he even picks up his fork. My son orders a diet coke at the pool club with a rehearsed spiel of, "Can I have a diet coke? You need to make sure it is diet coke because I have type 1 diabetes." He is only 5.
Imagine 15 years from now. He may grow tired of these rituals. There may be a time when he just doesn't want to check his sugar, or he doesn't feel like packing that supply bag when he takes his girlfriend to the movies. It is not going to get easier, it is going to get more and more overwhelming. You know yourself, if you've had a hard day at work, you may skip something that you normally do because you are so tired. Maybe you skip a shower that night, thinking to yourself, "Ah, I'll shower in the morning." My son won't have options like that when it comes to his diabetes care. He won't be able to say, "Ah, I'll check my sugar in the morning, or I'll take insulin when I wake up." If you don't shower, you will wake up dirty. If my son doesn't follow his rituals, he may not wake up. Period.
An adult very close to me has Type 1 diabetes, and this is what she said about getting used to living with it. She said, "I've dealt with it for 7 years and for real I think it gets harder because in the beginning you do what you have to do and then there are times, years later that you realize there is a ball and chain that you can never escape and you realize how much of your life revolves around it. It sucks."
If anyone deserves to yell at the top of their lungs ENOUGH ALREADY it is the people living with this disease every day. Next time you are inclined to tell a person recently diagnosed with Type 1 diabetes that it will get easier. Think of that never ending marathon, and just give a hug of support instead.
Thursday, July 2, 2009
Control?
Although people with Type 1 diabetes work diligently at maintaining good blood glucose levels, actual control of blood glucose levels for people with Type 1 (esp. children) is a misnomer.
When your child gets diagnosed with Type 1 diabetes, there are many things that you can and must control. You can control hardware, such as what meter you are going to use to check their glucose levels. You can control what form of insulin administration is best for your child: syringe, pen or insulin pump. You can control how many times you test your child a day. You can control the healthy meals and snacks you create for your child. However, you learn very quickly, in this tightly controlled world that there are many more things that you cannot control.
You cannot control the weather. You cannot control stress or excitment your child may be feeling. You cannot control growth hormones, or illness. So now you may be asking yourself, well really who can control these things? Yes, that is true, no one can control the weather or what have you. But unfortunately ALL of these uncontrolled factors affect blood glucose levels. So in such an uncontrolled world with so many outside factors taking part, it is virtually impossible to control blood glucose levels. That is not to say good blood glucose levels can not be maintained. I'm not saying that at all. It's the control part that is the misnomer.
Take my son for example, he has been living with diabetes for over 19 months. We are constantly working 24 hours a day, seven days a week to ensure that his numbers are as close to target as possible. While we do achieve good numbers most days, there are days when there are highs and lows that hit us out of the blue.
Our way of handling these numbers is by logging. Everytime I check my son's glucose level, I write it down. I write down up to 12 checks a day on most days. What this does for me is it gives me the abiltiy to track patterns of highs and lows and provides me with ammunition foresee those highs and lows the next time to keep his sugar in range.
For instance, we enjoy (or rather he enjoys) going to a place called BounceU. It is an indoor play area with blow up attractions. It is a very physical place...a very physical place. I noticed the first time we went there, my son went low five hours after coming home. I wrote that in the log. The next time we went to BounceU, I remembered that he went low five hours after playing, so I gave him 10 uncovered (no insulin) carbs to help ward off the low. Didn't work, he still went low. I also wrote that in the log. The last time we went, I remembered he still went low with 10 uncovered carbs, so this time he had 20 uncovered carbs. You know what, he did not go low. Score one for mom, but this was not control.
I don't call this control. I laugh at people when they ask if his numbers are controlled. This is not control. Control would be never having a high or a low, and that is just not possible.
So please, before you ask a person with Type 1 diabetes if their numbers are controlled take a moment to reevaluate. The question in and of itself is invasive and should not be asked in the first place, and really it it provides you no where else to go in the conversation. A simple, "How are you?" would suffice everytime.
When your child gets diagnosed with Type 1 diabetes, there are many things that you can and must control. You can control hardware, such as what meter you are going to use to check their glucose levels. You can control what form of insulin administration is best for your child: syringe, pen or insulin pump. You can control how many times you test your child a day. You can control the healthy meals and snacks you create for your child. However, you learn very quickly, in this tightly controlled world that there are many more things that you cannot control.
You cannot control the weather. You cannot control stress or excitment your child may be feeling. You cannot control growth hormones, or illness. So now you may be asking yourself, well really who can control these things? Yes, that is true, no one can control the weather or what have you. But unfortunately ALL of these uncontrolled factors affect blood glucose levels. So in such an uncontrolled world with so many outside factors taking part, it is virtually impossible to control blood glucose levels. That is not to say good blood glucose levels can not be maintained. I'm not saying that at all. It's the control part that is the misnomer.
Take my son for example, he has been living with diabetes for over 19 months. We are constantly working 24 hours a day, seven days a week to ensure that his numbers are as close to target as possible. While we do achieve good numbers most days, there are days when there are highs and lows that hit us out of the blue.
Our way of handling these numbers is by logging. Everytime I check my son's glucose level, I write it down. I write down up to 12 checks a day on most days. What this does for me is it gives me the abiltiy to track patterns of highs and lows and provides me with ammunition foresee those highs and lows the next time to keep his sugar in range.
For instance, we enjoy (or rather he enjoys) going to a place called BounceU. It is an indoor play area with blow up attractions. It is a very physical place...a very physical place. I noticed the first time we went there, my son went low five hours after coming home. I wrote that in the log. The next time we went to BounceU, I remembered that he went low five hours after playing, so I gave him 10 uncovered (no insulin) carbs to help ward off the low. Didn't work, he still went low. I also wrote that in the log. The last time we went, I remembered he still went low with 10 uncovered carbs, so this time he had 20 uncovered carbs. You know what, he did not go low. Score one for mom, but this was not control.
I don't call this control. I laugh at people when they ask if his numbers are controlled. This is not control. Control would be never having a high or a low, and that is just not possible.
So please, before you ask a person with Type 1 diabetes if their numbers are controlled take a moment to reevaluate. The question in and of itself is invasive and should not be asked in the first place, and really it it provides you no where else to go in the conversation. A simple, "How are you?" would suffice everytime.
Wednesday, July 1, 2009
No good or bad Type 1 diabetes.
There is no such thing as a good or a bad type of Type 1 diabetes. You either get diagnosed or not. There is no Pre-Type 1, we are not that lucky...not so for Type 2 diabetes.
The day my son with diagnosed with Type 1 diabetes will remain burned in my brain along with the day he was placed in my arms for the first time. I distinctly remember in the hospital on his diagnosis day when the Pediatric nurse told me my son had Type 1 diabetes that my first question was, "Does he have it bad?" She looked at me and smiled and said, "There is no better or worse, he has diabetes."
At the time, I had no idea what she meant. Now after being the main caregiver for a child living with Type 1 diabetes, I fully understand what she meant. You cannot have a little Type 1 diabetes, just like you cannot be a little pregnant, you either are or you aren't. You either have Type 1 diabetes or you don't.
Upon diagnosis you immediately require insulin from an outside source because the child's body cannot and will not make any more of it's own insulin. Without insulin the child will die. There is no good or bad, it is Type 1 diabetes, a life long disease that begins at diagnosis and ends...well, you know, in the end.
Now one of the main differences between Type 2 diabetes and Type 1 is that you can be diagnosed with Pre-diabetes which means that you are on your way to getting Type 2 diabetes. With great effort on the person with Pre-Diabetes there is a chance that they will not get the official diagnosis of Type 2 diabetes. Exercise, changing to a low carb or healthier diet, losing weight, can all possibly help a person with Pre-diabetes from actually getting Type 2.
There is no such option for people diagnosed with Type 1. When your child is diagnosed with Type 1 it is usually in the hospital. The child usually goes from being healthy to very sick seemingly overnight. Once the autoimmune process of the body begins to attack the cells in the pancreas, and it becomes apparent to the parent that something is not right, you usually have a very sick little boy or girl on your hands. No exercise, diet, low carb, water, or whatever else that can possibly prevent Type 2 diabetes can do anything for the child being diagnosed with Type 1 diabetes. Once the child has it, he has it. Not good or bad. Not a little or a lot. Not worse or better. A child diagnosed with Type 1 diabetes will have that disease forever.
The day my son with diagnosed with Type 1 diabetes will remain burned in my brain along with the day he was placed in my arms for the first time. I distinctly remember in the hospital on his diagnosis day when the Pediatric nurse told me my son had Type 1 diabetes that my first question was, "Does he have it bad?" She looked at me and smiled and said, "There is no better or worse, he has diabetes."
At the time, I had no idea what she meant. Now after being the main caregiver for a child living with Type 1 diabetes, I fully understand what she meant. You cannot have a little Type 1 diabetes, just like you cannot be a little pregnant, you either are or you aren't. You either have Type 1 diabetes or you don't.
Upon diagnosis you immediately require insulin from an outside source because the child's body cannot and will not make any more of it's own insulin. Without insulin the child will die. There is no good or bad, it is Type 1 diabetes, a life long disease that begins at diagnosis and ends...well, you know, in the end.
Now one of the main differences between Type 2 diabetes and Type 1 is that you can be diagnosed with Pre-diabetes which means that you are on your way to getting Type 2 diabetes. With great effort on the person with Pre-Diabetes there is a chance that they will not get the official diagnosis of Type 2 diabetes. Exercise, changing to a low carb or healthier diet, losing weight, can all possibly help a person with Pre-diabetes from actually getting Type 2.
There is no such option for people diagnosed with Type 1. When your child is diagnosed with Type 1 it is usually in the hospital. The child usually goes from being healthy to very sick seemingly overnight. Once the autoimmune process of the body begins to attack the cells in the pancreas, and it becomes apparent to the parent that something is not right, you usually have a very sick little boy or girl on your hands. No exercise, diet, low carb, water, or whatever else that can possibly prevent Type 2 diabetes can do anything for the child being diagnosed with Type 1 diabetes. Once the child has it, he has it. Not good or bad. Not a little or a lot. Not worse or better. A child diagnosed with Type 1 diabetes will have that disease forever.
Tuesday, June 30, 2009
No 'getting off' insulin for us.
A person with Type 1 diabetes can never 'get off' or stop using insulin regardless of exercise and diet.
A few months after my son was diagnosed we were at a family party. I was really not used to him having Type 1, so I was really unprepared to have an educated conversation about it. The farthest any conversation had gotten up until this point since our diagnosis consisted of, "How are you?" and "How is your son?" No one had ever asked any questions that I might not have known the answer, until this party two months after diagnosis.
A friend of my cousin who was a nurse started to ask me what I was feeding my son for breakfast. I told her pancakes, and stuff like that. I could tell by the look on her face that she disapproved. In an attempt to understand Type 1 diabetes better, I engaged in what I thought was going to be an enlightening conversation. Well, it was enlightening alright, but for all the wrong reasons.
She started to yell at me, yes yell at me, that I would never be able to get my son off insulin if I continued to feed him carbs such as pancakes. I must have looked confused, I never really thought that I had to get him off insulin, so she continued. She said I needed to change his diet, cut out all carbs, so that I could get him off insulin once and for all.
I was so stunned and angry that I couldn't even formulate a sentence. I was not angry at her (yet) I was angry at the hospital nursing staff because they had led me to believe that he needed insulin and carbs to live and grow. I felt like I had been misled.
Well, I came home, after crying the whole hour ride home and immediately posted what had happened on www.type1parents.org. I cried and cried as I typed asking the parents that had become my support system exactly what I was doing wrong, should I be trying to get my son off insulin as this person had suggested (yelled) to me.
Do you know what they wrote back to me? A very simple statement, that still sticks in my thoughts today. They wrote, "Insulin is like air to your son, without it he will die." Seriously, he will die without it. Could you imagine the consequences if I had believed this woman, and started to feed my 4 year old a carb free diet so that I could try to get him off insulin. First he would stop growing from lack of carbs, which give the body energy, then he would eventually die from lack of insulin.
Everyone needs insulin to live. People without Type 1 diabetes don't have to think one second if their body is producing insulin. People without Type 1 have a steady stream of insulin flowing through their body keeping their blood sugar level automtatically. When the pancreas works, by providing insulin, it's a very handy organ. The brain is even smart enough to tell a person's pancreas without diabetes that a piece of very rich creamy chocolate cake is coming down the pipe soon, so insulin production is increased even before the first bite is swallowed to ensure the blood glucose levels remain consistent. Very nice system, when it works.
People with Type 1 diabetes don't have the luxury of a working pancreas that puts out insulin. There is no insulin being produced...ever. Not for meals, and not for just simple living. Because of this people with Type 1 need to rely on two methods of insulin delivery every day. One type that gets taken every 24 hours is called a BASAL insulin. It takes the place of the BASE insulin that everyone else has coursing through their blood without any effort on their part. It keeps their blood glucose steady during times when they are not eating.
Now, the second method of insulin delivery that must be administered with every carb ingested is called the fast acting insulin, or BOLUS. This bolus (fast acting insulin) can be taken as many times a day as the person eats carbs. Some people take as few as 3 shots a day of fast acting, and some people can take as many as 10 shots a day. Let me explain. A four year old boy, as my son was at diagnosis, asks for milk. He has to get a shot to cover that milk. Then he asks for lunch, maybe a PB & J sandwich and some carrots. He has to get a shot to cover the carbs in the jelly and the bread, and even the carrots. Do you see where this is going? Think about another 4 or 5 year old that you may know. Eating and growing go hand in hand. Everytime my son eats, he has to get insulin. A bolus of insulin is also given if the blood glucose goes higher than the appropriate range for that particular person.
So, 'getting off' insulin is by no means any option for people with Type 1 diabetes. They have the basal insulin to keep them steady and the bolus of fast acting to cover their carbs when they eat and to treat high blood glucose. While a healthy diet and exercise are wonderful ways of life, they will not cure Type 1 diabetes, and they will never replace the insulin that their bodies no longer make.
I look forward to the next family party when I may see this person again. Now I am ready to have that educated conversation. Except this time, it would be me doing the educating.
A few months after my son was diagnosed we were at a family party. I was really not used to him having Type 1, so I was really unprepared to have an educated conversation about it. The farthest any conversation had gotten up until this point since our diagnosis consisted of, "How are you?" and "How is your son?" No one had ever asked any questions that I might not have known the answer, until this party two months after diagnosis.
A friend of my cousin who was a nurse started to ask me what I was feeding my son for breakfast. I told her pancakes, and stuff like that. I could tell by the look on her face that she disapproved. In an attempt to understand Type 1 diabetes better, I engaged in what I thought was going to be an enlightening conversation. Well, it was enlightening alright, but for all the wrong reasons.
She started to yell at me, yes yell at me, that I would never be able to get my son off insulin if I continued to feed him carbs such as pancakes. I must have looked confused, I never really thought that I had to get him off insulin, so she continued. She said I needed to change his diet, cut out all carbs, so that I could get him off insulin once and for all.
I was so stunned and angry that I couldn't even formulate a sentence. I was not angry at her (yet) I was angry at the hospital nursing staff because they had led me to believe that he needed insulin and carbs to live and grow. I felt like I had been misled.
Well, I came home, after crying the whole hour ride home and immediately posted what had happened on www.type1parents.org. I cried and cried as I typed asking the parents that had become my support system exactly what I was doing wrong, should I be trying to get my son off insulin as this person had suggested (yelled) to me.
Do you know what they wrote back to me? A very simple statement, that still sticks in my thoughts today. They wrote, "Insulin is like air to your son, without it he will die." Seriously, he will die without it. Could you imagine the consequences if I had believed this woman, and started to feed my 4 year old a carb free diet so that I could try to get him off insulin. First he would stop growing from lack of carbs, which give the body energy, then he would eventually die from lack of insulin.
Everyone needs insulin to live. People without Type 1 diabetes don't have to think one second if their body is producing insulin. People without Type 1 have a steady stream of insulin flowing through their body keeping their blood sugar level automtatically. When the pancreas works, by providing insulin, it's a very handy organ. The brain is even smart enough to tell a person's pancreas without diabetes that a piece of very rich creamy chocolate cake is coming down the pipe soon, so insulin production is increased even before the first bite is swallowed to ensure the blood glucose levels remain consistent. Very nice system, when it works.
People with Type 1 diabetes don't have the luxury of a working pancreas that puts out insulin. There is no insulin being produced...ever. Not for meals, and not for just simple living. Because of this people with Type 1 need to rely on two methods of insulin delivery every day. One type that gets taken every 24 hours is called a BASAL insulin. It takes the place of the BASE insulin that everyone else has coursing through their blood without any effort on their part. It keeps their blood glucose steady during times when they are not eating.
Now, the second method of insulin delivery that must be administered with every carb ingested is called the fast acting insulin, or BOLUS. This bolus (fast acting insulin) can be taken as many times a day as the person eats carbs. Some people take as few as 3 shots a day of fast acting, and some people can take as many as 10 shots a day. Let me explain. A four year old boy, as my son was at diagnosis, asks for milk. He has to get a shot to cover that milk. Then he asks for lunch, maybe a PB & J sandwich and some carrots. He has to get a shot to cover the carbs in the jelly and the bread, and even the carrots. Do you see where this is going? Think about another 4 or 5 year old that you may know. Eating and growing go hand in hand. Everytime my son eats, he has to get insulin. A bolus of insulin is also given if the blood glucose goes higher than the appropriate range for that particular person.
So, 'getting off' insulin is by no means any option for people with Type 1 diabetes. They have the basal insulin to keep them steady and the bolus of fast acting to cover their carbs when they eat and to treat high blood glucose. While a healthy diet and exercise are wonderful ways of life, they will not cure Type 1 diabetes, and they will never replace the insulin that their bodies no longer make.
I look forward to the next family party when I may see this person again. Now I am ready to have that educated conversation. Except this time, it would be me doing the educating.
Monday, June 29, 2009
We didn't cause this.
Demystifying Type 1 Diabetes one thought at a time…you can't get type1 diabetes from eating sugar, cake, or juice it is an AUTOIMMUNE disease...not so for Type 2.
This is a really big misconception, and one that takes me off guard everytime I am confronted with it. I am shocked at first when people ask me, “Did your son drink a lot of juice as a baby?” As to imply that the reason he has Type 1 Diabetes in the first place is because I drowned him in juice when he was an infant.
Then I am saddened that yet again this question is being asked of me. It makes me sad because moms should know that giving your child juice as part of a healthy meal plan would never, ever give your little one Type 1 Diabetes. It should just be something that comes with becoming a mom.
Then I get angry. I get angry because I realize the what the question really is, “Did you give your child Type 1 because you gave him juice?” As if I would chose to give my child a disease that would require him to have to take shots of insulin with every meal, prick his finger a minimum of 10 times a day, remain unsure of his future health, fall into a coma, have repeated seizures all because I wanted to give him juice in a sippy cup.
And so here we are, www.type1demystified.com, a place where I can hash all this out, so that Type 1 Diabetes can be understood by more than the people whose lives it so deeply and profoundly affects.
While research has shown that there is a correlation between unhealthy eating habits and Type 2 Diabetes, this is just not so when it comes to Type1 Diabetes.
As explained on the American Diabetes Association website, what happens to the body of a person just diagnosed with Type 1 Diabetes is as follows:
Inside the pancreas, beta cells make the hormone insulin. With each meal, beta cells release insulin to help the body use or store the blood glucose it gets from food. In people with type 1 diabetes, the pancreas no longer makes insulin. The beta cells have been destroyed and they need insulin shots to use glucose from meals.
When my son was diagnosed with Type 1 Diabetes, it meant that his pancreas no longer makes insulin. His body had begun to attack the cells inside the pancreas that make insulin so that they no longer make the insulin. This does not happen because he ate sugar, or junk food, or soda. It is an autoimmune process that occurs from within the body. There is no outside source (food or lack of exercise) that can cause Type 1 Diabetes.
This is not the case for people with Type 2 diabetes. The following paragraphs from both the ADA website and WebMd website respectively, continue on to explain the difference between the two types of diabetes and the difference in their origination.
People with type 2 diabetes make insulin, but their bodies don't respond well to it. Some people with type 2 diabetes need diabetes pills or insulin shots to help their bodies use glucose for energy.
Diabetes is a number of diseases that involve problems with the hormone insulin. While not everyone with type 2 diabetes is overweight, obesity and lack of physical activity are two of the most common causes of this form of diabetes. It is also responsible for nearly 95% of diabetes cases in the United States, according to the CDC.
People that get Type 1 Diabetes can in no way avoid getting this disease. Like my son, there was nothing I could do to prevent or even prepare myself from smacking into the brick wall of a diagnosis of Type 1 Diabetes. Believe me, if there were anyway I could have avoided this disease being bestowed upon my son, I certainly would have.
That is just not the case for people with Type 2 Diabetes. There are ways to avoid Type 2 Diabetes. Type 1 Diabetes is UNAVOIDABLE for the people that do eventually get diagnosed.
This is a really big misconception, and one that takes me off guard everytime I am confronted with it. I am shocked at first when people ask me, “Did your son drink a lot of juice as a baby?” As to imply that the reason he has Type 1 Diabetes in the first place is because I drowned him in juice when he was an infant.
Then I am saddened that yet again this question is being asked of me. It makes me sad because moms should know that giving your child juice as part of a healthy meal plan would never, ever give your little one Type 1 Diabetes. It should just be something that comes with becoming a mom.
Then I get angry. I get angry because I realize the what the question really is, “Did you give your child Type 1 because you gave him juice?” As if I would chose to give my child a disease that would require him to have to take shots of insulin with every meal, prick his finger a minimum of 10 times a day, remain unsure of his future health, fall into a coma, have repeated seizures all because I wanted to give him juice in a sippy cup.
And so here we are, www.type1demystified.com, a place where I can hash all this out, so that Type 1 Diabetes can be understood by more than the people whose lives it so deeply and profoundly affects.
While research has shown that there is a correlation between unhealthy eating habits and Type 2 Diabetes, this is just not so when it comes to Type1 Diabetes.
As explained on the American Diabetes Association website, what happens to the body of a person just diagnosed with Type 1 Diabetes is as follows:
Inside the pancreas, beta cells make the hormone insulin. With each meal, beta cells release insulin to help the body use or store the blood glucose it gets from food. In people with type 1 diabetes, the pancreas no longer makes insulin. The beta cells have been destroyed and they need insulin shots to use glucose from meals.
When my son was diagnosed with Type 1 Diabetes, it meant that his pancreas no longer makes insulin. His body had begun to attack the cells inside the pancreas that make insulin so that they no longer make the insulin. This does not happen because he ate sugar, or junk food, or soda. It is an autoimmune process that occurs from within the body. There is no outside source (food or lack of exercise) that can cause Type 1 Diabetes.
This is not the case for people with Type 2 diabetes. The following paragraphs from both the ADA website and WebMd website respectively, continue on to explain the difference between the two types of diabetes and the difference in their origination.
People with type 2 diabetes make insulin, but their bodies don't respond well to it. Some people with type 2 diabetes need diabetes pills or insulin shots to help their bodies use glucose for energy.
Diabetes is a number of diseases that involve problems with the hormone insulin. While not everyone with type 2 diabetes is overweight, obesity and lack of physical activity are two of the most common causes of this form of diabetes. It is also responsible for nearly 95% of diabetes cases in the United States, according to the CDC.
People that get Type 1 Diabetes can in no way avoid getting this disease. Like my son, there was nothing I could do to prevent or even prepare myself from smacking into the brick wall of a diagnosis of Type 1 Diabetes. Believe me, if there were anyway I could have avoided this disease being bestowed upon my son, I certainly would have.
That is just not the case for people with Type 2 Diabetes. There are ways to avoid Type 2 Diabetes. Type 1 Diabetes is UNAVOIDABLE for the people that do eventually get diagnosed.
Sunday, June 28, 2009
Stop using just the word diabetes...choose T1 or T2.
Mass media, medical professionals, and news reporters perpetuate misconceptions about Type 1 diabetes by using the word 'diabetes' when they are really only talking about Type 2 diabetes.
Lately, you can't turn on the television without hearing the word diabetes. Glucose meter companies are starting to advertise their meters, news stories are highlighting diabetes in their health segments, and drug companies are selling their latest diabetes product. There is a problem with all of this chatter, however, no one is differentiating between Type 1 and Type 2 diabetes. While in most cases, and I really mean all cases, they are talking about Type 2 diabetes, they just leave out the words Type 2 and say, diabetes. While this may not be an issue for people with Type 2 diabetes, or even people without diabetes at all, it does cause a problem for people living with the 'other' diabetes, Type 1 diabetes.
This is where all the misconceptions begin. People eating their breakfast listening to the television in the background hear the word diabetes, then the rest of the commercial, then think they automatically know what my son is going through day in and day out. One commercial on how to eating right and exercise can help control your diabetes, and they think they have the lock on how to help my five year old 'control' his diabetes. Every one of these commercials would make my son's life a whole lot easier if they would just use the full title of this particular disease, Type 2 diabetes. Or at least add a disclaimer saying something like, "While our commercial/news story/PSA will help people with Type 2 diabetes, please leave people with Type 1 diabetes alone, this does not pertain to them." Obviously, I know this won't happen but it would be nice.
I saw this on a webpage of a nurse that my son will have to work with one day in a future school that he will attend.
"YOU KNOW March is National Nutrition Month and March 2nd - 6th is National School Breakfast Week? Eating a balanced breakfast helps to keep you alert and feeling good. Children who eat breakfast are significantly less likely to be obese or become diabetic. Children are more likely to have better concentration, problem -solving skills and hand-eye coordination."
When I read this I almost cried. Okay, I really did cry, but just a little. This lack of clarity that penetrates our subconscious on a daily basis is what makes it so hard for my little guy to explain why his diabetes, Type 1, is different than Type 2 diabetes. A school nurse is a respected authority on health information, and the fact that this statement would be placed out there for everyone to read implies that my son, my child, possibly didn't eat breakfast and that is why he became 'diabetic.' My son should not have to answer to another five year old about whether he ate breakfast or not, and whether that is why he has diabetes or not. Addition of the simple term 'Type 2' would educate people immediately that there is more than one type of diabetes. It wouldn't explain the whole story, but it might stop one person from saying something so insensitive and so inappropriate to my son so he doesn't even have to question whether his breakfast choices may or may not have caused his diabetes...which we all know they didn't.
Lately, you can't turn on the television without hearing the word diabetes. Glucose meter companies are starting to advertise their meters, news stories are highlighting diabetes in their health segments, and drug companies are selling their latest diabetes product. There is a problem with all of this chatter, however, no one is differentiating between Type 1 and Type 2 diabetes. While in most cases, and I really mean all cases, they are talking about Type 2 diabetes, they just leave out the words Type 2 and say, diabetes. While this may not be an issue for people with Type 2 diabetes, or even people without diabetes at all, it does cause a problem for people living with the 'other' diabetes, Type 1 diabetes.
This is where all the misconceptions begin. People eating their breakfast listening to the television in the background hear the word diabetes, then the rest of the commercial, then think they automatically know what my son is going through day in and day out. One commercial on how to eating right and exercise can help control your diabetes, and they think they have the lock on how to help my five year old 'control' his diabetes. Every one of these commercials would make my son's life a whole lot easier if they would just use the full title of this particular disease, Type 2 diabetes. Or at least add a disclaimer saying something like, "While our commercial/news story/PSA will help people with Type 2 diabetes, please leave people with Type 1 diabetes alone, this does not pertain to them." Obviously, I know this won't happen but it would be nice.
I saw this on a webpage of a nurse that my son will have to work with one day in a future school that he will attend.
"YOU KNOW March is National Nutrition Month and March 2nd - 6th is National School Breakfast Week? Eating a balanced breakfast helps to keep you alert and feeling good. Children who eat breakfast are significantly less likely to be obese or become diabetic. Children are more likely to have better concentration, problem -solving skills and hand-eye coordination."
When I read this I almost cried. Okay, I really did cry, but just a little. This lack of clarity that penetrates our subconscious on a daily basis is what makes it so hard for my little guy to explain why his diabetes, Type 1, is different than Type 2 diabetes. A school nurse is a respected authority on health information, and the fact that this statement would be placed out there for everyone to read implies that my son, my child, possibly didn't eat breakfast and that is why he became 'diabetic.' My son should not have to answer to another five year old about whether he ate breakfast or not, and whether that is why he has diabetes or not. Addition of the simple term 'Type 2' would educate people immediately that there is more than one type of diabetes. It wouldn't explain the whole story, but it might stop one person from saying something so insensitive and so inappropriate to my son so he doesn't even have to question whether his breakfast choices may or may not have caused his diabetes...which we all know they didn't.
First post.
People with T1 diabetes (esp. kids) must test their sugar (prick their finger) 10 times a day to catch unexplained highs & lows to avoid coma & seizures.
According to the American Diabetes Association (ADA) website:
How often your child checks could change from day to day. Talk to your doctor or diabetes educator about when and how often to check on a normal day. Because different people require different treatment options, the Association does not recommend a specific number of tests per day. Your doctor or educator can work with you and your child to determine the best treatment plan. (People who take insulin generally require a minimum of three or four tests per day, though this can vary widely and it may be necessary to test more often.)
While recommendation or lack thereof from the ADA may be helpful to someone who just wants some basic information regarding Type 1 diabetes, they really do not paint the whole picture for someone who really needs to live with or care for a child with Type 1 diabetes.
A child with Type 1 diabetes can easily test a minimum of 9 times a day, sometimes more. While this may seem excessive to some, especially to people without Type 1 diabetes, but let me break it down for you.
A child with Type 1 gets tested:
(1) when he wakes up
(2) 2 hours after breakfast to make sure the correct ratio is being used for breakfast and that all is working properly
(3) before lunch
(4) 2 hours after lunch to make sure the correct ratio is being used for lunch
(5) before dinner
(6) 2 hours after dinner to make sure the correct ratio is being used for dinner
(7) before bedtime snack
(8) 2 hours after bedtime snack or before the caregiver goes to bed
(9) 3am to ensure numbers are not rising or dropping
These test times do not include days of extra activity (10), days where a low is being treated (11), days where a high is being treated (12), or sick days (13).
Again, understandably, this may seem excessive, but let my provide a real life example of what can happen if you do not test on a regular schedule everyday for the rest of the child’s life.
* If a caregiver tests before breakfast and the number is 99 the caregiver can go ahead and give breakfast. Before breakfast insulin is given to cover the carbs that the child is going to eat. Child finishes eating and goes to school.
* If the 2 hour check is skipped for whatever reason, the next check would not be until lunch time, possibly 4-5 hours after breakfast. Child feels fine all through the morning of school so no one even thinks that anything can be wrong.
* Child goes to lunch and says he feels sick, like he is going to vomit. Go to nurse, check sugar and the number is 525!! Child is tested for ketones and they come back high. Somehow, somewhere something went wrong since this morning. As there was no 2 hour check no one is sure where the problem occurred.
* Go back to the history in the pump and see that the breakfast insulin was given so that should have worked fine. Go to check the child’s pump that looks good. Check the child’s site where the pump connects to his body that looks good. Check the tubing of the pump, THERE IS A CRACK IN IT! Somehow between the first test of the morning and lunch time a crack occurred in the tubing and the child was not receiving any insulin…the very thing he needs to stay healthy and alive.
Now, while this does not happen every day, and in fact, it rarely happens, but you tell me, what caregiver of a child with Type 1 diabetes is going to take that chance with their child’s health and life.
The only way to ensure that your child is receiving the proper amount of insulin during the day is to TEST, TEST & TEST!
According to the American Diabetes Association (ADA) website:
How often your child checks could change from day to day. Talk to your doctor or diabetes educator about when and how often to check on a normal day. Because different people require different treatment options, the Association does not recommend a specific number of tests per day. Your doctor or educator can work with you and your child to determine the best treatment plan. (People who take insulin generally require a minimum of three or four tests per day, though this can vary widely and it may be necessary to test more often.)
While recommendation or lack thereof from the ADA may be helpful to someone who just wants some basic information regarding Type 1 diabetes, they really do not paint the whole picture for someone who really needs to live with or care for a child with Type 1 diabetes.
A child with Type 1 diabetes can easily test a minimum of 9 times a day, sometimes more. While this may seem excessive to some, especially to people without Type 1 diabetes, but let me break it down for you.
A child with Type 1 gets tested:
(1) when he wakes up
(2) 2 hours after breakfast to make sure the correct ratio is being used for breakfast and that all is working properly
(3) before lunch
(4) 2 hours after lunch to make sure the correct ratio is being used for lunch
(5) before dinner
(6) 2 hours after dinner to make sure the correct ratio is being used for dinner
(7) before bedtime snack
(8) 2 hours after bedtime snack or before the caregiver goes to bed
(9) 3am to ensure numbers are not rising or dropping
These test times do not include days of extra activity (10), days where a low is being treated (11), days where a high is being treated (12), or sick days (13).
Again, understandably, this may seem excessive, but let my provide a real life example of what can happen if you do not test on a regular schedule everyday for the rest of the child’s life.
* If a caregiver tests before breakfast and the number is 99 the caregiver can go ahead and give breakfast. Before breakfast insulin is given to cover the carbs that the child is going to eat. Child finishes eating and goes to school.
* If the 2 hour check is skipped for whatever reason, the next check would not be until lunch time, possibly 4-5 hours after breakfast. Child feels fine all through the morning of school so no one even thinks that anything can be wrong.
* Child goes to lunch and says he feels sick, like he is going to vomit. Go to nurse, check sugar and the number is 525!! Child is tested for ketones and they come back high. Somehow, somewhere something went wrong since this morning. As there was no 2 hour check no one is sure where the problem occurred.
* Go back to the history in the pump and see that the breakfast insulin was given so that should have worked fine. Go to check the child’s pump that looks good. Check the child’s site where the pump connects to his body that looks good. Check the tubing of the pump, THERE IS A CRACK IN IT! Somehow between the first test of the morning and lunch time a crack occurred in the tubing and the child was not receiving any insulin…the very thing he needs to stay healthy and alive.
Now, while this does not happen every day, and in fact, it rarely happens, but you tell me, what caregiver of a child with Type 1 diabetes is going to take that chance with their child’s health and life.
The only way to ensure that your child is receiving the proper amount of insulin during the day is to TEST, TEST & TEST!
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