When DJ was diagnosed with diabetes I spent a LONG time beating myself up, wondering what I did to make this happen and how I could have prevented it. The truth is, nothing can stop type 1 diabetes from happening. Type 1 diabetes is an autoimmune disease in which the body's immune system attacks and destroys the insulin-producing cells of the pancreas. While its causes are not yet entirely understood, scientists believe that both genetic factors and environmental triggers are involved (from JDRF website).
I know people are generally well meaning, but I gotta be honest. I have spent six years taking care of a child that has type 1 diabetes. I'm pretty well versed in the do's and the don'ts of it. If people don't understand the "rules" around diabetes and want to be educated, I'm the first person to step up and share whatever information I have. I absolutely cannot stand for people to make assumptions that what I'm doing for her is "wrong" or "unhealthy". The fact of the matter is, we all should limit our sugar and unhealthy carb and fat intake but we all (most of us) indulge, sometimes more than we should. As long as DJ's doctors are okay with what she consumes... so am I.
As for a cure for diabetes, type 2 can often be controlled or even stopped with proper diet and exercise (but not always). There is absolutely no cure for type 1 diabetes... YET. I'm not going to read any books on natural cures or put DJ on a special diet. I just won't do it. Imagine being 12 years old and being different than most of the kids you know, the suddenly you're forced into this crazy strict diet and exercise routine (more crazy than what it already is with having diabetes)... and the kicker is it wouldn't get rid of diabetes anyway. It might make diabetes easier to manage, but that's our burden to carry, as the parent. Finding a balance between a normal life and managing diabetes is my reality, all day every day.
I think I'm done with my rant. I do appreciate people's care and concern. Also, I do recognize, as I said before, that most people are trying to be helpful. As the parent of a child with a medical condition it does often feel like people are being insensitive to what we must be going through, as though we wouldn't have already thought to look for a "cure" or ways to make this contition easier to live with.
When I started this post I was really kind of mad. Now I just feel the need to throw my hands up, shake my head and say, please try to think about what life must be like for us. This has been a really bad diabetes week for us and our friends with diabetes-crazy coincidence-and we are all just trying to get through it together.
Thank you to those friends and acquaintances that have made the effort, have asked questions and have educated themselves.
If you're not with us, then get to steppin'. 'Cause we don't need you bringing us down.
Wednesday, July 13, 2011
Monday, July 4, 2011
Baby's First
There's nothing quite like seeing your baby take her first steps, read her first words, dress herself for the first time or take off on a bike for the first time... Unless your child has some sort of medical condition that requires them to learn other new things, take other kinds of "first steps".
I was talking to a friend today and was reminded of all of the firsts DJ and I have had since her diagnosis.
A lot of DJ's firsts were not with me. I got hear her first words and see her take her first steps, not to mention all of her school and sports firsts. I did not get to see her ride a bike or help her learn how to read; I get to thank her step-mom for that. Seriously, my sincerest thanks!
A lot of DJ's diabetes firsts were at diabetes camp or at her dads. When DJ was diagnosed she took it like a champ. She didn't even cry when she had to take her first shot, when she found out she would have to take them everyday she was mad, but she didn't even cry... right away. After the first few days she started testing her own blood sugar, I got to see that one. At diabetes camp, less than a year after diagnosis and at the tender age of 7, DJ learned how to take a shot in her stomach (before it had been strictly the arm or the leg) and she learned how to give herself a shot in the leg and stomach. The following year, at age 8, she learned how to give herself shots in her arm-a lot more difficult than the leg, thank you very much.
When DJ was in third grade she lived with her dad and it was there that she began to prepare to get her insulin pump. The first step was getting an insulin pen, she loved that thing. In 4th grade, she was living me again, she went to visit Dad for summer vacation and got the insuiln pump she had been so impatiently waiting for. She learned how to attach her infusion set and to run the pump through the steps to get it set up and working all by herself. When DJ came home from that summer vacation she was teaching me how to take care of her.
A few other firsts DJ had were sleep overs (with non-family member, it took a few years), counting carbs, reading food lables and most recently going to a non-diabetes related camp.
I can't speak for anyone but myself, and I don't want to take away from the excitement of DJ's "normal" firsts... but I just cannot explain to you how special each and every one of those diabetes firsts have been. Each time DJ makes some kind of progress I feel so proud and so excited, but a little part of me is sad because I know that it's one less thing she needs me for and she is one step closer to independence.
I was talking to a friend today and was reminded of all of the firsts DJ and I have had since her diagnosis.
A lot of DJ's firsts were not with me. I got hear her first words and see her take her first steps, not to mention all of her school and sports firsts. I did not get to see her ride a bike or help her learn how to read; I get to thank her step-mom for that. Seriously, my sincerest thanks!
A lot of DJ's diabetes firsts were at diabetes camp or at her dads. When DJ was diagnosed she took it like a champ. She didn't even cry when she had to take her first shot, when she found out she would have to take them everyday she was mad, but she didn't even cry... right away. After the first few days she started testing her own blood sugar, I got to see that one. At diabetes camp, less than a year after diagnosis and at the tender age of 7, DJ learned how to take a shot in her stomach (before it had been strictly the arm or the leg) and she learned how to give herself a shot in the leg and stomach. The following year, at age 8, she learned how to give herself shots in her arm-a lot more difficult than the leg, thank you very much.
When DJ was in third grade she lived with her dad and it was there that she began to prepare to get her insulin pump. The first step was getting an insulin pen, she loved that thing. In 4th grade, she was living me again, she went to visit Dad for summer vacation and got the insuiln pump she had been so impatiently waiting for. She learned how to attach her infusion set and to run the pump through the steps to get it set up and working all by herself. When DJ came home from that summer vacation she was teaching me how to take care of her.
A few other firsts DJ had were sleep overs (with non-family member, it took a few years), counting carbs, reading food lables and most recently going to a non-diabetes related camp.
I can't speak for anyone but myself, and I don't want to take away from the excitement of DJ's "normal" firsts... but I just cannot explain to you how special each and every one of those diabetes firsts have been. Each time DJ makes some kind of progress I feel so proud and so excited, but a little part of me is sad because I know that it's one less thing she needs me for and she is one step closer to independence.
Sunday, July 3, 2011
Pump Education
All people with type 1 diabetes need insulin to survive (some people with type 2 diabetes need insulin as well). This is a fact. The only way to get insulin into the body is to inject it. This is done with a small syringe, an insulin pen (still a needle) or a pump. DJ has a pump. There are several different kinds of pumps; DJ has an Animas Ping, hers is blue.
For us, the three selling points of the Ping were 1) With DJ's active lifestyle it seemed like a really good fit. She can take it off and put it on very easily which is really helpful when she's playing sports. 2) It's completely water proof so although DJ doesn't need to wear it when she's swimming, she could. 3) The meter, the thing you test your blood with on the left, acts as a remote to the pump which is on the right. So if DJ is sleeping or sick I can test her blood and give her insulin when she needs it without waking her up. It also allows for more privacy when giving insulin in public, a very big deal to DJ.
The insulin pump is nice for several reasons. 1) DJ only has to change the sight (essentially give herself an injection) every three days instead of shots every time she eats. 2) DJ gets a constant stream of insulin 24/7 which should lead to better control of her numbers. This constant stream of insulin is called a basal. 3) When she eats she tests her blood sugar and the pump looks at her current number and DJ tells it how many grams of carbs she's going to eat. The pump does a little math and tells her how much extra insulin she should take to keep her numbers in a healthy range. This extra dose of insulin is called a bolus.
Once a week we are supposed to (I really need to work on this) download the information from DJ's meter and pump. The softwear that goes along with the pump produces reports that show us how much insulin through basal and bolus DJ is getting every day. The basal and the bolus should be very close to equal. For example if DJ is getting 40 units of insulin through her basal (steady stream) she should be getting about 40 units through the bolus' (extra doses with meals). If DJ is getting a lot more insulin through bolus her numbers will be high on average, if she gets a lot of extra insulin through basal her numbers will be low on average.
There is also a report that shows all of DJ's test results (numbers) over the last week (or longer if we need to look). When we look at this report we need to look at patterns of highs, lows or healthy numbers and along with the other report we make adjustments to the basal rate in the hopes that DJ's numbers will improve.
Then life goes on and we do it all again next week.
It's all relatively simple once you learn it. Honestly, most of it you learn just because your child has diabetes, before you are even introduced to the pump. The pump makes it easier because it does a lot of the hard work for you. It would be perfect if life were the same day after day after day.
Because life is not the same day after day it's not always so easy. (Don't worry. I'm almost done. If you've hung on this long I shall reward you by ending the lesson soon). Doses of insulin (basal and bolus) have to be adjusted with variables such as illness, stress, activity and time of day. I won't even go into the details on all of this. I just want to make it clear that although the pump is pretty amazing, it's not a working pancreas. I'm confident DJ will have one of those someday too, though.
***Disclaimer: I hear it kinda sucks to have to walk around with a little piece of medical equipment attached to you 24/7, especially if you accidentally drop it while it's attached! Ouch!
The insulin pump is nice for several reasons. 1) DJ only has to change the sight (essentially give herself an injection) every three days instead of shots every time she eats. 2) DJ gets a constant stream of insulin 24/7 which should lead to better control of her numbers. This constant stream of insulin is called a basal. 3) When she eats she tests her blood sugar and the pump looks at her current number and DJ tells it how many grams of carbs she's going to eat. The pump does a little math and tells her how much extra insulin she should take to keep her numbers in a healthy range. This extra dose of insulin is called a bolus.
Once a week we are supposed to (I really need to work on this) download the information from DJ's meter and pump. The softwear that goes along with the pump produces reports that show us how much insulin through basal and bolus DJ is getting every day. The basal and the bolus should be very close to equal. For example if DJ is getting 40 units of insulin through her basal (steady stream) she should be getting about 40 units through the bolus' (extra doses with meals). If DJ is getting a lot more insulin through bolus her numbers will be high on average, if she gets a lot of extra insulin through basal her numbers will be low on average.
There is also a report that shows all of DJ's test results (numbers) over the last week (or longer if we need to look). When we look at this report we need to look at patterns of highs, lows or healthy numbers and along with the other report we make adjustments to the basal rate in the hopes that DJ's numbers will improve.
Then life goes on and we do it all again next week.
It's all relatively simple once you learn it. Honestly, most of it you learn just because your child has diabetes, before you are even introduced to the pump. The pump makes it easier because it does a lot of the hard work for you. It would be perfect if life were the same day after day after day.
Because life is not the same day after day it's not always so easy. (Don't worry. I'm almost done. If you've hung on this long I shall reward you by ending the lesson soon). Doses of insulin (basal and bolus) have to be adjusted with variables such as illness, stress, activity and time of day. I won't even go into the details on all of this. I just want to make it clear that although the pump is pretty amazing, it's not a working pancreas. I'm confident DJ will have one of those someday too, though.
***Disclaimer: I hear it kinda sucks to have to walk around with a little piece of medical equipment attached to you 24/7, especially if you accidentally drop it while it's attached! Ouch!
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