Here are some facts about Type 1 Diabetes, Please read!
Diabetes Fact #30: Diabetes sucks, but, we have the BEST support network EVER.
Diabetes Fact #29: It is important to know and understand the signs of a HIGH blood sugar for a person with T1 Diabetes.
Diabetes Fact #28: The siblings of people with T1 Diabetes are AMAZING.
Diabetes Fact #27: Knowing the signs of a LOW blood sugar and how to treat the low can save someone's life!
Diabetes Fact #26: Adults and children with T1 Diabetes are incredibly BRAVE and STRONG.
Diabetes Fact #25:A Diabetes diagnosis can put strain on the marriage of the person with T1 (for adults) or for the parents of the child diagnosed.
Diabetes Fact #24:Complications from out of range blood sugars with T1 Diabetics are very real and very worrisome to those living with the disease (and their parents/loved ones).
Diabetes Fact #23:The only thing constant with Diabetes, is that nothing stays the same.
Diabetes Fact #22:Diabetes is a family disease and affects every person in the family, near and far.
Diabetes Fact #21:Having Type 1 Diabetes means finger pokes 8-10 times per day (or more) and YES that means using BLOOD to do this.
Diabetes Fact #20:Despite always injecting the proper amount of insulin, people with type 1 Diabetes face many other factors that can adversely affect efforts to tightly control blood sugar levels. These factors include stress, hormonal changes, periods of growth, physical activity, medications, illness/infection, fatigue, and EVERYTHING they do or don't do every.single.day.
Diabetes Fact #19: T1 Diabetes is a 24/7/365 disease. It NEVER sleeps and neither do the parents of the children who have it (or the T1 people themselves).
Diabetes Fact #18: T1 Diabetes can happen to ANYONE, it is not necessarily hereditary. This means that yes, it CAN happen to YOU or to someone YOU know.
Diabetes Fact #17: People with T1 or T2 Diabetes (and their caregivers) are more likely to experience depression than their peers without Diabetes.
Diabetes Fact #16: The out of pocket cost of managing T1 Diabetes is EXPENSIVE.
Diabetes Fact #15: Having Type 1 and getting an illness (especially a tummy bug) CAN be dangerous.
Diabetes Fact #14: Without insulin, a person with T1 Diabetes would DIE within ONE week.
Diabetes Fact #13: Type 1 Diabetes usually strikes children, adolescents, and young adults, but it CAN be diagnosed in adults as well.
Diabetes Fact #12: It is important for families of Diabetic children or the people with Diabetes themselves to genuinely try to understand what we go through, to learn about Diabetes along with us, and to support us through encouraging comments.
Diabetes Fact #11: Diabetes is ALL consuming. It is NOT our life, but it is a HUGE part of it.
Diabetes Fact #10: Parents of children with Diabetes HATE when people say "I could NEVER do it!" when referring to the management of their kid's disease. In reality, YOU could, and WOULD do it if you HAD to. We probably had the same thoughts as you and now look at us, doing it 24/7.
Diabetes Fact #9: The term "Juvenile Diabetes" is outdated. We now call it "T1 Diabetes" or "Insulin Dependent Diabetes". People with this type of Diabetes will NEVER outgrow it. EVER. They will have this relentless disease until a CURE is found.
Diabetes Fact #8: A cure would be great, but a long life without complications is a close second for people with T1 Diabetes.
Diabetes Fact #7: Diabetes kills more people each year than cancer and AIDS combined. It is serious. We NEED a cure!
Diabetes Fact #6: While people with T1 Diabetes strive for blood glucose (BG) numbers from 80-120, it is NOT uncommon to see numbers MUCH lower or MUCH higher. There are SO many factors that go into each number and it is very challenging to see readings that are “in range” for EVERY reading.
Diabetes Fact #5: Type 1 Diabetes strikes 15,000 children every year in the US. That's 40 children per day. On July 10, 2008 The Superhero was one of the 40. Today, it could be YOUR child, or someone you know. This is why it is SO important to take the time to learn about the disease.
Diabetes Fact #4: Type 1 Diabetics may take insulin through syringes, insulin pens, or insulin pumps. What they use is a reflection of their choice and/or finances, NOT disease severity.
Diabetes Fact #3: People with Diabetes CAN eat anything they want as long as they match the carbohydrates with insulin.
Diabetes Fact #2: T1 Diabetes is NOT caused by eating too much sugar or being over weight. It IS an autoimmune disease and cannot be prevented.
Diabetes Fact #1: T1 Diabetes CANNOT be treated with medication. The only way to manage T1 Diabetes is with insulin. Without insulin, T1 Diabetics would die. Period.
I got this from another wonderful D mom, check our her blog!
http://www.onesuperheroandoneprincess.com/2010/11/best-support-network-ever.html
Tuesday, November 30, 2010
Friday, November 5, 2010
Monitoring continiously
Soooo Alyssa got onto a CGM (continious glucose monitor) for a 6 day period where we were able to store up to 288 blood sugars a day (isn't that amazing?!) and see what Alyssa's numbers were doing. Well, go figure the second we get her on a CGM her blood sugars are amazing every time we check! But that's a good thing. :) I think the stress with our move... Alyssa losing her kitty cat... starting a new school, new friends may have made those sugars go up and now she's kind of relaxing and things are going well. The only adjustments made after the results of the CGM were viewed was adding a little bit more insulin to her basal rates between the 4 pm-9 pm hour. She seems to spike immediately after dinner and we always need to adjust her high sugar with some insulin before I go to bed so around 11 pm or so.
One day a continious glucose monitor will hopefully talk to her insulin pump and we won't have to worry about those finger checks 8-10 times a day! Wouldn't that be wonderful?
Halloween was awesome this year... the kids had a blast and the kids picked 5 pieces of candy to keep, ate 1 or 2 Halloween night and that was IT. I'm really proud of my husband, myself and my kids - we've really cut out the bad eating this passed year. That's the one positive thing Diabetes has brought to our life - a realization that eating that fast food and sugary stuff really does nothing GOOD for your body - it screws it up and makes you feel right down yucky!
As a result my kids are healthier and happier. My husband has lost weight and looks awesome, and I've lost weight and am able to keep up with all my Zumba teaching. We feel great!
Now we have the holidays to look foward to. And this year... things are looking more hopeful. I remember Diabetic mommies telling me it would get "more normal" and "easier" and the truth of having a Type 1 Diabetic child isn't that it gets easier... or just normal... but that you learn to live. And you learn to really live, and you know that nothing - not even diabetes - will stop you and most definitely - it will NOT stop your child from their dreams. We can't let it.
"So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." Isaiah 41:10
One day a continious glucose monitor will hopefully talk to her insulin pump and we won't have to worry about those finger checks 8-10 times a day! Wouldn't that be wonderful?
Halloween was awesome this year... the kids had a blast and the kids picked 5 pieces of candy to keep, ate 1 or 2 Halloween night and that was IT. I'm really proud of my husband, myself and my kids - we've really cut out the bad eating this passed year. That's the one positive thing Diabetes has brought to our life - a realization that eating that fast food and sugary stuff really does nothing GOOD for your body - it screws it up and makes you feel right down yucky!
As a result my kids are healthier and happier. My husband has lost weight and looks awesome, and I've lost weight and am able to keep up with all my Zumba teaching. We feel great!
Now we have the holidays to look foward to. And this year... things are looking more hopeful. I remember Diabetic mommies telling me it would get "more normal" and "easier" and the truth of having a Type 1 Diabetic child isn't that it gets easier... or just normal... but that you learn to live. And you learn to really live, and you know that nothing - not even diabetes - will stop you and most definitely - it will NOT stop your child from their dreams. We can't let it.
"So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." Isaiah 41:10
Tuesday, October 12, 2010
A1C Going Up...
SOOO FRUSTRATING!!! Yesterday Alyssa had her 3 month checkup with our endocrinologist. Her A1C went up, AGAIN. From 8.3 to 8.9.
It's maddening. As a mother of a Diabetic child, you check and you bolus and you check and you bolus trying and trying to achieve that goal of a 120 blood glucose. But sometimes you can do everything absolutely right and Diabetes still throws you a curve ball.
We're trying to make adjustments to basal rates (the insulin her pump automatically gives her once an hour) to see if that could help control her blood sugars... and also a higher insulin to carb ratio. Now when she eats breakfast she gets 1 unit of insulin per every 25 carbs she eats. For lunch she gets 1 unit for every 40 carbs. And the rest of the day, 1 unit for every 50 carbs. Amazing how different it is from morning to night!
When kids are growing, they give off a growth hormone which fights with the insulin creating a lot of kids (mine included) to be insulin resistant in the morning.
So what we're going to do so we can see what Alyssa's blood sugars are doing ALL the time (instead of only the "snapshot" we get when we test her blood glucose) she's going to be hooked up to a Continuous Glucose Monitor (CGM) for 5 days and then we will take it off and the doctors will plug it into the computer and see what comes up! This way we can take a look at her blood sugars and what they are consistently.
We aren't going to get a CGM for her to wear permanently:
A.) The doctor thinks it's a better idea for her to wear something like that when she knows how to care for her diabetes more independently.
B.) It's very expensive and it's not covered by our insurance. (Don't you love health care?)
C.) I don't want my daughter to be hooked up to anymore things right now. The CGM requires another catheter in her body. And another thing she has to wear constantly on her body like her insulin pump.
So we go tomorrow afternoon to get the CGM hooked up and in 2 weeks we'll have a follow up. Here we go!
It's maddening. As a mother of a Diabetic child, you check and you bolus and you check and you bolus trying and trying to achieve that goal of a 120 blood glucose. But sometimes you can do everything absolutely right and Diabetes still throws you a curve ball.
We're trying to make adjustments to basal rates (the insulin her pump automatically gives her once an hour) to see if that could help control her blood sugars... and also a higher insulin to carb ratio. Now when she eats breakfast she gets 1 unit of insulin per every 25 carbs she eats. For lunch she gets 1 unit for every 40 carbs. And the rest of the day, 1 unit for every 50 carbs. Amazing how different it is from morning to night!
When kids are growing, they give off a growth hormone which fights with the insulin creating a lot of kids (mine included) to be insulin resistant in the morning.
So what we're going to do so we can see what Alyssa's blood sugars are doing ALL the time (instead of only the "snapshot" we get when we test her blood glucose) she's going to be hooked up to a Continuous Glucose Monitor (CGM) for 5 days and then we will take it off and the doctors will plug it into the computer and see what comes up! This way we can take a look at her blood sugars and what they are consistently.
We aren't going to get a CGM for her to wear permanently:
A.) The doctor thinks it's a better idea for her to wear something like that when she knows how to care for her diabetes more independently.
B.) It's very expensive and it's not covered by our insurance. (Don't you love health care?)
C.) I don't want my daughter to be hooked up to anymore things right now. The CGM requires another catheter in her body. And another thing she has to wear constantly on her body like her insulin pump.
So we go tomorrow afternoon to get the CGM hooked up and in 2 weeks we'll have a follow up. Here we go!
Tuesday, September 21, 2010
1 year ago today...
This time last year, I thought I was taking my daughter was a simple checkup to find out why she'd been drinking so much water and using the bathroom so much. I had googled the symptoms several times (if you ask me, the symptoms are NOT known well enough by people who aren't affected by this disease) and thought, "There is no way that Alyssa has diabetes. It doesn't run in our family, and besides the excessive drinking of water, she's not sick!"
Alyssa's symptoms at diagnosis:
Excessive thirst
Excessive urination
Weight loss (almost 20% of her body weight)
Here we are, one year later. I didn't know how this one year mark would hit us all. We want to make it a fun day for everyone, so we plan on going to the Puyallup Fair later this afternoon! But it definitely hit me this morning after Alyssa got on the bus.
I was simply getting dressed for the day and feeling very stressed out (I had to get up and get Alyssa ready for picture day, feed the animals, have Alyssa make her bed, test blood glucose, do a site change, brush teeth and be out to the bus all in 50 minutes!) and I just burst into tears. I don't want to feel sad about it being a year, if anything I should feel stronger, we've made it through our first year of dealing with Diabetes! But in the same breath, I can't help but feel sick to my stomach... 1 year doesn't mean it's over, it means it's going to continue until there's a cure. And Lord, do I hope there's a cure in Alyssa's lifetime.
In the past year we have:
Tested Alyssa's blood glucose approximately 2,920 times.
Given Alyssa (and she's given herself) approximately 1,085 insulin injections.
Done approximately 70 infusion set changes for her insulin pump.
Pray for a cure for Alyssa.
Be strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you. - Deuteronomy 31:6
Alyssa's symptoms at diagnosis:
Excessive thirst
Excessive urination
Weight loss (almost 20% of her body weight)
Here we are, one year later. I didn't know how this one year mark would hit us all. We want to make it a fun day for everyone, so we plan on going to the Puyallup Fair later this afternoon! But it definitely hit me this morning after Alyssa got on the bus.
I was simply getting dressed for the day and feeling very stressed out (I had to get up and get Alyssa ready for picture day, feed the animals, have Alyssa make her bed, test blood glucose, do a site change, brush teeth and be out to the bus all in 50 minutes!) and I just burst into tears. I don't want to feel sad about it being a year, if anything I should feel stronger, we've made it through our first year of dealing with Diabetes! But in the same breath, I can't help but feel sick to my stomach... 1 year doesn't mean it's over, it means it's going to continue until there's a cure. And Lord, do I hope there's a cure in Alyssa's lifetime.
In the past year we have:
Tested Alyssa's blood glucose approximately 2,920 times.
Given Alyssa (and she's given herself) approximately 1,085 insulin injections.
Done approximately 70 infusion set changes for her insulin pump.
Pray for a cure for Alyssa.
Be strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you. - Deuteronomy 31:6
Friday, July 16, 2010
Strength for today
It's been awhile since I updated my blog so I thought this would be a good time!
Our walk for the JDRF in May went extremely well. Our team was huge, consisting of family, friends, and students - turned friends - from my Zumba classes. We raised about $2,000 for research in Alyssa's name! Not bad for our first year and not really knowing WHAT to except as far as raising money goes.
Alyssa went to the endocrinologist this past Monday and her A1C went up to 8.6. Disappointing, but I know why... her blood sugars have just been all over the place especially this past month. With higher basal rates going on now (basal: insulin Alyssa receives every hour to keep her blood sugar leveled, bolus: insulin Alyssa receives for high blood sugars and for food) I'm hoping we can get a tigher reign on her numbers. Although every hour, every finger prick brings another decision. Give the full amount of insulin she needs? But what she decides to go out and play? Am I giving her too many carbs to boost her sugar up for exercise - will she burn enough? Will she drop too low? It's a guessing game, and you have to make decisions based on mostly motherly instinct and how you feel your diabetic child trends... a lot of times I'm wrong. Just the other day she was going to go swimming and I knew she'd be off her insulin pump for at least an hour. I tested her blood glucose - 140. Great number, almost exactly her goal of 120... but was it high enough for her to jump into the pool and swim around for an hour? Or would her blood glucose drop drasticaly as it often does when she exercises? I gave her a juice consisting of 24 carbs and let her swim for over an hour. When she got of the pool, I checked her blood glucose and it was 278. WHAT? An hour of exercise and she's higher? Frustrating.
It's been a rough week for me emotionally. Sometimes I tell myself that I should be over the fact my daughter is now a lifelong diabetic (until God willing, there's a cure). But then I have to remind myself (and occasionally have others remind me as well) that I might forever feel this way. There's good times, and before this week there had been a lot of them - I felt like I was getting all this down. But for some reason after her appointment this week, the rest of the week has been one big emotional rollercoaster. Filled with a lot of tears, or a lot of "on the verge" of tears. The grief just comes in waves - and the grief wave hit me big time this week.
Having your child diagnosed with a chronic, life-threatening disease can be a very isolating feeling. I feel alone sometimes because I don't have any friends in real life (I have some wonderful online support through Facebook who have diabetic kids) that have a diabetic child. I can tell them how much work it is til my face turns blue, but at the end of the day, I feel as if no one understands me and how exhausting diabetes is. And it's just that- exhausting. It never ends. It never takes a break. When I'm done giving her insulin, I think of when the next finger prick needs to be - and if she is having a high blood sugar, do we need to test ketones? Do a site change? IT NEVER ENDS!
I sometimes feel guilty for feeling this way. After all, I'm not the one with Type 1 Diabetes, my daughter is. I can go to the store and not have to give myself insulin, but she never will be able to. She of all people will never get a break. How is that fair?
One thing is for certain. Life ISN'T fair. Ever. I have to remind myself though that when those isolating feelings surround me... I'm not alone. I have my God. And He gives me the strength and the grace to deal with today. Because all I have to do is today. Just today.
Our walk for the JDRF in May went extremely well. Our team was huge, consisting of family, friends, and students - turned friends - from my Zumba classes. We raised about $2,000 for research in Alyssa's name! Not bad for our first year and not really knowing WHAT to except as far as raising money goes.
Alyssa went to the endocrinologist this past Monday and her A1C went up to 8.6. Disappointing, but I know why... her blood sugars have just been all over the place especially this past month. With higher basal rates going on now (basal: insulin Alyssa receives every hour to keep her blood sugar leveled, bolus: insulin Alyssa receives for high blood sugars and for food) I'm hoping we can get a tigher reign on her numbers. Although every hour, every finger prick brings another decision. Give the full amount of insulin she needs? But what she decides to go out and play? Am I giving her too many carbs to boost her sugar up for exercise - will she burn enough? Will she drop too low? It's a guessing game, and you have to make decisions based on mostly motherly instinct and how you feel your diabetic child trends... a lot of times I'm wrong. Just the other day she was going to go swimming and I knew she'd be off her insulin pump for at least an hour. I tested her blood glucose - 140. Great number, almost exactly her goal of 120... but was it high enough for her to jump into the pool and swim around for an hour? Or would her blood glucose drop drasticaly as it often does when she exercises? I gave her a juice consisting of 24 carbs and let her swim for over an hour. When she got of the pool, I checked her blood glucose and it was 278. WHAT? An hour of exercise and she's higher? Frustrating.
It's been a rough week for me emotionally. Sometimes I tell myself that I should be over the fact my daughter is now a lifelong diabetic (until God willing, there's a cure). But then I have to remind myself (and occasionally have others remind me as well) that I might forever feel this way. There's good times, and before this week there had been a lot of them - I felt like I was getting all this down. But for some reason after her appointment this week, the rest of the week has been one big emotional rollercoaster. Filled with a lot of tears, or a lot of "on the verge" of tears. The grief just comes in waves - and the grief wave hit me big time this week.
Having your child diagnosed with a chronic, life-threatening disease can be a very isolating feeling. I feel alone sometimes because I don't have any friends in real life (I have some wonderful online support through Facebook who have diabetic kids) that have a diabetic child. I can tell them how much work it is til my face turns blue, but at the end of the day, I feel as if no one understands me and how exhausting diabetes is. And it's just that- exhausting. It never ends. It never takes a break. When I'm done giving her insulin, I think of when the next finger prick needs to be - and if she is having a high blood sugar, do we need to test ketones? Do a site change? IT NEVER ENDS!
I sometimes feel guilty for feeling this way. After all, I'm not the one with Type 1 Diabetes, my daughter is. I can go to the store and not have to give myself insulin, but she never will be able to. She of all people will never get a break. How is that fair?
One thing is for certain. Life ISN'T fair. Ever. I have to remind myself though that when those isolating feelings surround me... I'm not alone. I have my God. And He gives me the strength and the grace to deal with today. Because all I have to do is today. Just today.
Tuesday, April 13, 2010
A1C going down...
Good news! We went to the Diabetes Clinic yesterday and Alyssa's A1C went from 8.3% to 7.8%! Just goes to show you the pump is working much better than insulin shots.
For those who don't know, here's a definition what A1C is:
a test that measures a person's average blood glucose level over the past 2 to 3 months. Hemoglobin (HEE-mo-glo-bin) is the part of a red blood cell that carries oxygen to the cells and sometimes joins with the glucose in the bloodstream. ...
Her goal for this past visit was to get below 8% (which we did!) and they want to keep her as close to 7% as possible so we keep her healthy long term.
When she was diagnosed she was 13.8%.
A child without diabetes runs around 4.6% on average.
Small victories.
For those who don't know, here's a definition what A1C is:
a test that measures a person's average blood glucose level over the past 2 to 3 months. Hemoglobin (HEE-mo-glo-bin) is the part of a red blood cell that carries oxygen to the cells and sometimes joins with the glucose in the bloodstream. ...
Her goal for this past visit was to get below 8% (which we did!) and they want to keep her as close to 7% as possible so we keep her healthy long term.
When she was diagnosed she was 13.8%.
A child without diabetes runs around 4.6% on average.
Small victories.
Wednesday, April 7, 2010
The kids on Easter
Here are pictures of the kids on Easter! I have more when they were dying eggs with me and daddy, so I'll post those later. :)
Easter was wonderful. We dyed eggs on Saturday (Christian thought we were "killing the eggs"), on Sunday morning the kids found their Easter baskets. Alyssa got a new Wii game called "World of Zoo" (she's so into video games, any sort of game really!), a chocolate Easter bunny and some sugarfree gum. Christian got a new Diego toy (he plays make believe with things a lot more than Alyssa does), a chocolate Easter bunny and sugarfree gum. The Easter bunny left them candy in their eggs, except for Alyssa, she got money. The darn Easter bunny though, hid 10 eggs for each of the kids and we could only find 19! That Easter bunny... forgets where he hides his own eggs... sheesh...
Afterwards we headed to church for a wonderful service with Papa Dave and Nana. Papa Roger was unfortunately out of town on business. Afterwards we headed to Nana's house and had a wonderful, big breakfast, watched "The 10 Commandments" and then later in the day we took the kids with Papa Dave to see "How to Train Your Dragon" in 3D. Very good movie!!!
It was a wonderful Easter, and a wonderful celebration of the selfless love of our Lord, sending His son to bridge the gap between Himself and us. Thank God for that.
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