I'll post about Christmas later. (It was great, by the way.)
I want to end this year blogging like I have the last two years. I will post a sentence from one definitive post from each month.
January: Nice to Be Amongst the Living
"I started this blog to help other parents of kids with Type 1."
February: It Makes Me Put My Hand Over My Heart
"While standing for The National Anthem at one of Holden's basketball games last week I noticed that nearly every one was standing with their hand over their heart."
March: It's the (Seemingly) Little Things
"A lot of times with life it's not the big events or the times in your life that get the most attention that have the most significance."
April: Diabetes Burnout: What Do You Do?
"Everybody gets burned out sometimes."
May: Just Imagine
"It was Riley's bedtime."
June: And I'm Off...
"I'm officially off work for the summer."
July: How Much Life Has Changed Since Diagnosis
"Every couple of months or so we get a newsletter in the mail from the medical center where we got pump training."
August: Amen
"Riley's overheard prayer:"Dear God, Grandaddy is a good grandaddy."
September: Running At 120%
"Sunday night Riley had a stuffy nose."
October: Three Years Chained
"Three years ago today was the worst day of my entire life."
November: Hope, Belief, Pain, and Faith
"Today marks 3 years that I have been blogging."
December: Head or Heart (or Kidneys or Eyes Or...)
"Every parent wants what’s best for their child."
Tuesday, December 30, 2008
Monday, December 22, 2008
It Wasn't a One Time Thing
Back in September Riley ended up in the ER because he was having trouble breathing. He did a round of antibiotics and a round of Prednisone and used an inhaler as needed. After a few days he was better. The doctors didn't really have an explanation for what had happened. All they would say is "maybe it's a one time thing". It had all started with a stuffy nose.
Friday, Riley started with a stuffy nose again. By Sunday afternoon he was wheezing.
I gave him his inhaler and it helped to clear him up. But, after a few hours he was wheezing again. He needed his inhaler about every four hours, including twice in the middle of the night.
I took him to the doctor today. He's on Prednisone again (oh, joy). The doctor said I can give the inhaler every 2 hours if needed (and I've had to do that a few times). And, that if I have to continue to give it every 2 hours that I need to call back and they'll put Riley in the hospital.
As I write this Riley is jumping up and down on his mattress in the living room. (We are doing our annual tradition of sleeping in the living room under the Christmas tree lights.) He is wheezing and coughing (he had his inhaler less than an hour ago). When I tell him to calm down so he can breathe better he tells me he's trying to bring his sugar down.
45 minutes ago it was 375. I've increased his basal 120% like last time he was on Prednisone. I'm hoping it will work.
I'm also hoping that this Prednisone does it's job and I can stop using the inhaler so often and then stop using it at all.
This time instead of "maybe it's just a one time thing" I heard, "maybe he'll grow out of it".
I hope he "grows out of it" before Christmas.
Friday, Riley started with a stuffy nose again. By Sunday afternoon he was wheezing.
I gave him his inhaler and it helped to clear him up. But, after a few hours he was wheezing again. He needed his inhaler about every four hours, including twice in the middle of the night.
I took him to the doctor today. He's on Prednisone again (oh, joy). The doctor said I can give the inhaler every 2 hours if needed (and I've had to do that a few times). And, that if I have to continue to give it every 2 hours that I need to call back and they'll put Riley in the hospital.
As I write this Riley is jumping up and down on his mattress in the living room. (We are doing our annual tradition of sleeping in the living room under the Christmas tree lights.) He is wheezing and coughing (he had his inhaler less than an hour ago). When I tell him to calm down so he can breathe better he tells me he's trying to bring his sugar down.
45 minutes ago it was 375. I've increased his basal 120% like last time he was on Prednisone. I'm hoping it will work.
I'm also hoping that this Prednisone does it's job and I can stop using the inhaler so often and then stop using it at all.
This time instead of "maybe it's just a one time thing" I heard, "maybe he'll grow out of it".
I hope he "grows out of it" before Christmas.
Monday, December 15, 2008
1.9%
As is the usual with this blog I have poured out my pain and dispair in the last couple of posts. I started this blog to be a help to other parents going through the same thing. As I've said before, it became more of a help to me.
When I'm having a bad day D-wise I come here and vent. I talk about the highs and the lows. I speak of the pain this disease has caused me as well as my fears. Every once in a while you'll get an uplifting post from me, but not very often.
It's kind of like when you get good service at a restaurant, you appreciate it, but you don't say much about it. But, if you go to a restaurant and get horrible service you tell everyone you know.
When I'm getting horrible service with diabetes I write about it here.
98% of the time diabetes is way far in the back ground. It gets the time and attention it needs and deserves and then I move on. Occasionally, I get in a rut and the other 2% comes out in my posts.
Right now I'm very happy. For one, this is the last week of school before Christmas break. Since I am a school nurse now my whole family is pretty much on the same schedule. My kids, Michael, and I all get out 1/2 a day on Friday. Then, we don't have to go back to school until January 5th. I can't even convey in this post the excitement that brings to me.
Earlier today the teacher next door and I actually counted up the seconds we have left before Christmas break. It doesn't sound as long when you put it in seconds.
I can't wait to be at home for a couple of weeks with my family.
I'm somewhat happy diabetes-wise too. We've had a rough couple of months. Riley's sugars have been high and it seemed that no matter what I did they would stay that way. Now, he's starting to even out some. It has taken several weeks of increasing his basal to finally get to where we are now. I guess I should have been a little more aggressive with the increases, but I was trying to avoid lows too.
Riley is so excited about Christmas. I love to see the smile on his face and the glimmer in his eye every time we move the candy cane on Santa's beard to count down the days until Christmas.
Every day is exciting to him. I am trying to catch a little bit of the excitement myself, trying to see the world through his eyes.
I'm trying to let the little things go. I'm trying to focus on the good and pray my way through the bad. I'm learning to let the laundry pile up (didn't take too much persuasion for that) and instead spend time with my kids.
As far as Riley is concerned diabetes is in the background 99.9% of the time. I'm trying to learn from him how to get my other 1.9%
When I'm having a bad day D-wise I come here and vent. I talk about the highs and the lows. I speak of the pain this disease has caused me as well as my fears. Every once in a while you'll get an uplifting post from me, but not very often.
It's kind of like when you get good service at a restaurant, you appreciate it, but you don't say much about it. But, if you go to a restaurant and get horrible service you tell everyone you know.
When I'm getting horrible service with diabetes I write about it here.
98% of the time diabetes is way far in the back ground. It gets the time and attention it needs and deserves and then I move on. Occasionally, I get in a rut and the other 2% comes out in my posts.
Right now I'm very happy. For one, this is the last week of school before Christmas break. Since I am a school nurse now my whole family is pretty much on the same schedule. My kids, Michael, and I all get out 1/2 a day on Friday. Then, we don't have to go back to school until January 5th. I can't even convey in this post the excitement that brings to me.
Earlier today the teacher next door and I actually counted up the seconds we have left before Christmas break. It doesn't sound as long when you put it in seconds.
I can't wait to be at home for a couple of weeks with my family.
I'm somewhat happy diabetes-wise too. We've had a rough couple of months. Riley's sugars have been high and it seemed that no matter what I did they would stay that way. Now, he's starting to even out some. It has taken several weeks of increasing his basal to finally get to where we are now. I guess I should have been a little more aggressive with the increases, but I was trying to avoid lows too.
Riley is so excited about Christmas. I love to see the smile on his face and the glimmer in his eye every time we move the candy cane on Santa's beard to count down the days until Christmas.
Every day is exciting to him. I am trying to catch a little bit of the excitement myself, trying to see the world through his eyes.
I'm trying to let the little things go. I'm trying to focus on the good and pray my way through the bad. I'm learning to let the laundry pile up (didn't take too much persuasion for that) and instead spend time with my kids.
As far as Riley is concerned diabetes is in the background 99.9% of the time. I'm trying to learn from him how to get my other 1.9%
Thursday, December 11, 2008
Fear
This post was inspired by a post written by George. He spoke about how he worries about having his leg amputated and how he worries he might have a heart attack in his sleep.
Hearing his fears brought mine bubbling up to the surface.
My biggest fear is having one of my children die before me. I pray almost every single day that God does not let either one of my children die before I do. I can't really think of anything worse that could happen to a parent.
Holden is seventeen. My fear for him stems from him being out on the road. I pray for his safety several times a day. Every time I hear his car pull into the driveway, music blaring, I say a silent prayer of thanks.
A parent worries about all of their children. We worry that they'll be safe and we worry that we're not screwing them up too badly.
But, when a chronic disease is brought into the mix, worry and fear take on a whole new dimension.
Early on in Riley's diagnosis I was fearful of a lot of things. I worried about him whenever he was not with me. I worried that he'd go low and no one would know what to do. I worried that I wasn't taking adequate care of him, that I wasn't capable of doing what was needed for him.
I didn't go to the movies for over 2 years after his diagnosis because I was afraid that my cell phone wouldn't pick up in the movie theater and that my mom might need me to ask me something about Riley's sugars and she wouldn't be able to reach me.
Those fears are still there to an extent, but not to the extent that they used to be.
I cried the whole summer before Riley started kindergarten. But, once he got there I realized that he was doing just fine. His teacher did an excellent job taking care of him. I learned to relax a little. I learned that I was not the only one who could take care of Riley and his diabetes.
I relaxed enough to go to the movies. Michael and I even went away for a weekend 2 1/2 years after Riley's diagnosis. I wouldn't do it earlier. I worried about being too far away from him. I worried that he would need me and I wouldn't be readily available.
Those fears have subsided a bit. But, there are still fears that have been there since day one and that are still there. I can't make them go away.
I realize that all of this may seem silly to many of you. You may call them irrational fears. Even if they are irrational, they are still my fears. They don't haunt my every waking moment. But, irrational or not, they are there.
My husband and I check Riley's sugar at least 2 times during the night while he's sleeping. Still, the first thing I do every morning when I get up is walk to Riley's bedroom door and listen for the sound of him breathing. If I can't hear him breathing I go into his room and place my hand on his chest. Once I find him still alive I take a deep breath and say a silent prayer of thanks.
Riley doesn't know I do this. I don't think Michael even knows I do this. But, I've done it every single morning for the last 3+ years. I learned of Dead in Bed Syndrome early on in Riley's diagnosis. And, try as I might, I can't get the thought of the horror of waking up in the morning to find your child dead out of my mind.
I guess maybe some parents of non-D kids might be able to relate to that a little. I think a lot of parents worry about SIDS when their children are babies. But, once they reach their first birthday that fear usually subsides.
I believe I'll have this fear forever.
I also worry about complications. Like I said, it's not an ever-present kind of thing. But, it's a fear that enters in and out of my thoughts, particularly when Riley's sugars have been high for a few days.
When I was doing research for Walk of Hope I came across this statistic: "By 20 years after diagnosis most people with Type 1 diabetes will have some form of complication".
It has haunted me ever since. Riley was diagnosed when he was 3. I can't bear the thought of my son having some complication from this disease by the time he's 23.
Here is another disturbing figure: 24% of type 1 diabetics will develop retinopathy (damage to the nerves in the eye caused by high blood sugars) after 5 years, almost 60% after 10 years and 100% after 20 years.
Again, when Riley's 23....
23, just getting out of college, just really starting life....
Fear can be crippling. But, it can also be motivating.
Sometimes the fear cripples me, sometimes it wins. Sometimes I cry myself to sleep or lock myself in the bathroom and sob because I"m overwhelmed with it all.
But, most of the time my fear motivates me. It motivates me to hold onto my sons a little tighter. It motivates me to log Riley's sugars. It motivates me to teach him a little at a time so that he can one day do all of this on his own.
But, most of all, it motivates me to help find a cure. The only way to get rid of these fears is to get rid of this disease.
That's exactly what I'm trying to do.
(**edit: Go read this post to hear just how real complications can be. While there take time to give Kate and Lance a hug or two.)
Hearing his fears brought mine bubbling up to the surface.
My biggest fear is having one of my children die before me. I pray almost every single day that God does not let either one of my children die before I do. I can't really think of anything worse that could happen to a parent.
Holden is seventeen. My fear for him stems from him being out on the road. I pray for his safety several times a day. Every time I hear his car pull into the driveway, music blaring, I say a silent prayer of thanks.
A parent worries about all of their children. We worry that they'll be safe and we worry that we're not screwing them up too badly.
But, when a chronic disease is brought into the mix, worry and fear take on a whole new dimension.
Early on in Riley's diagnosis I was fearful of a lot of things. I worried about him whenever he was not with me. I worried that he'd go low and no one would know what to do. I worried that I wasn't taking adequate care of him, that I wasn't capable of doing what was needed for him.
I didn't go to the movies for over 2 years after his diagnosis because I was afraid that my cell phone wouldn't pick up in the movie theater and that my mom might need me to ask me something about Riley's sugars and she wouldn't be able to reach me.
Those fears are still there to an extent, but not to the extent that they used to be.
I cried the whole summer before Riley started kindergarten. But, once he got there I realized that he was doing just fine. His teacher did an excellent job taking care of him. I learned to relax a little. I learned that I was not the only one who could take care of Riley and his diabetes.
I relaxed enough to go to the movies. Michael and I even went away for a weekend 2 1/2 years after Riley's diagnosis. I wouldn't do it earlier. I worried about being too far away from him. I worried that he would need me and I wouldn't be readily available.
Those fears have subsided a bit. But, there are still fears that have been there since day one and that are still there. I can't make them go away.
I realize that all of this may seem silly to many of you. You may call them irrational fears. Even if they are irrational, they are still my fears. They don't haunt my every waking moment. But, irrational or not, they are there.
My husband and I check Riley's sugar at least 2 times during the night while he's sleeping. Still, the first thing I do every morning when I get up is walk to Riley's bedroom door and listen for the sound of him breathing. If I can't hear him breathing I go into his room and place my hand on his chest. Once I find him still alive I take a deep breath and say a silent prayer of thanks.
Riley doesn't know I do this. I don't think Michael even knows I do this. But, I've done it every single morning for the last 3+ years. I learned of Dead in Bed Syndrome early on in Riley's diagnosis. And, try as I might, I can't get the thought of the horror of waking up in the morning to find your child dead out of my mind.
I guess maybe some parents of non-D kids might be able to relate to that a little. I think a lot of parents worry about SIDS when their children are babies. But, once they reach their first birthday that fear usually subsides.
I believe I'll have this fear forever.
I also worry about complications. Like I said, it's not an ever-present kind of thing. But, it's a fear that enters in and out of my thoughts, particularly when Riley's sugars have been high for a few days.
When I was doing research for Walk of Hope I came across this statistic: "By 20 years after diagnosis most people with Type 1 diabetes will have some form of complication".
It has haunted me ever since. Riley was diagnosed when he was 3. I can't bear the thought of my son having some complication from this disease by the time he's 23.
Here is another disturbing figure: 24% of type 1 diabetics will develop retinopathy (damage to the nerves in the eye caused by high blood sugars) after 5 years, almost 60% after 10 years and 100% after 20 years.
Again, when Riley's 23....
23, just getting out of college, just really starting life....
Fear can be crippling. But, it can also be motivating.
Sometimes the fear cripples me, sometimes it wins. Sometimes I cry myself to sleep or lock myself in the bathroom and sob because I"m overwhelmed with it all.
But, most of the time my fear motivates me. It motivates me to hold onto my sons a little tighter. It motivates me to log Riley's sugars. It motivates me to teach him a little at a time so that he can one day do all of this on his own.
But, most of all, it motivates me to help find a cure. The only way to get rid of these fears is to get rid of this disease.
That's exactly what I'm trying to do.
(**edit: Go read this post to hear just how real complications can be. While there take time to give Kate and Lance a hug or two.)
Wednesday, December 10, 2008
'Tis the Season (for giving to Faustman's research)
People tend to be a little more generous around this time of year. They seem to have the holiday spirit.
Are you feeling generous?
Thursday, December 18 there will be a diabetes walk at my son's school. All of the proceeds will be donated directly to Dr. Faustman's research at Massachusetts General Hospital.
My son attends a school that has about 320 kids. Of those 320, 5 of them have Type 1 diabetes. They range in age from 6-17.
If you'd like to help and donate to a very worthy cause email me and let me know and I'll tell you where to send the check. Or, if you'd like you can click here and donate on-line. If you choose the on-line option please email me (pennylane5001@embarqmail.com) and let me know your donation amount so I can add it to the walk total. Any amount is greatly appreciated.
It all adds up to a cure.
**edit: I just read the Faustman news letter!!! I read it with a huge grin on my face. I have the most hope I've had in a while. Click here to read the newsletter and have a few grins of your own.
Are you feeling generous?
Thursday, December 18 there will be a diabetes walk at my son's school. All of the proceeds will be donated directly to Dr. Faustman's research at Massachusetts General Hospital.
My son attends a school that has about 320 kids. Of those 320, 5 of them have Type 1 diabetes. They range in age from 6-17.
If you'd like to help and donate to a very worthy cause email me and let me know and I'll tell you where to send the check. Or, if you'd like you can click here and donate on-line. If you choose the on-line option please email me (pennylane5001@embarqmail.com) and let me know your donation amount so I can add it to the walk total. Any amount is greatly appreciated.
It all adds up to a cure.
**edit: I just read the Faustman news letter!!! I read it with a huge grin on my face. I have the most hope I've had in a while. Click here to read the newsletter and have a few grins of your own.
Tuesday, December 09, 2008
An Opportune Low
Holden had another basketball game last night. As we stood in line to buy food Riley was eyeing some very delicious-looking cupcakes.
"Can I have one?"
"Let's see what your sugar is first."
I checked his sugar while standing in line: 63.
"Yes. I guess you can."
"Can I eat it first?"
"Yes, you need to go on and eat it to bring your sugar up"
Normally, he would get a juice box before he could eat but this particular cupcake was piled high with sugar laden icing. I knew he would eat the icing first. He always licks all the icing off first and eats the cake part last.
I rechecked him in 15 minutes: 93. He got a bolus for the cupcake and the cheeseburger he ate.
Two hours later he was 91. Since he still had insulin on board and we'd be at the game a while I told him he could have a snack. We got back in line and this time he eyed something covered in chocolate. I asked the person behind the counter what it was. It was peanut butter crackers covered in chocolate.
Riley ate two of them. I bolused accordingly and two hours later he was 88.
Even thought is sugar went low it was not dangerously low. He got to eat a few treats and his sugars responded rather favorably.
We needed a night like that.
"Can I have one?"
"Let's see what your sugar is first."
I checked his sugar while standing in line: 63.
"Yes. I guess you can."
"Can I eat it first?"
"Yes, you need to go on and eat it to bring your sugar up"
Normally, he would get a juice box before he could eat but this particular cupcake was piled high with sugar laden icing. I knew he would eat the icing first. He always licks all the icing off first and eats the cake part last.
I rechecked him in 15 minutes: 93. He got a bolus for the cupcake and the cheeseburger he ate.
Two hours later he was 91. Since he still had insulin on board and we'd be at the game a while I told him he could have a snack. We got back in line and this time he eyed something covered in chocolate. I asked the person behind the counter what it was. It was peanut butter crackers covered in chocolate.
Riley ate two of them. I bolused accordingly and two hours later he was 88.
Even thought is sugar went low it was not dangerously low. He got to eat a few treats and his sugars responded rather favorably.
We needed a night like that.
Monday, December 08, 2008
Four
That's the number of birthday parties Riley attended this week. One was a party at school. The other three were all this weekend.
Things eaten at said parties:
cupcake, Doritos, cake, hot dog, potato chips, cookie, cake, peanut butter ball, sausage balls, Cheetos, crackers, cake, ice cream.
His sugars are still on the high side most days. I'm finding that blood sugar control has become much harder over the last several months. Riley's endo thinks that the "honeymoon" (what a stupid word for it) has finally ended for good. This means his pancreas doesn't help out at all anymore.
It just makes me want to cry. But, I won't. Past experience tells me it won't do any good.
Things eaten at said parties:
cupcake, Doritos, cake, hot dog, potato chips, cookie, cake, peanut butter ball, sausage balls, Cheetos, crackers, cake, ice cream.
His sugars are still on the high side most days. I'm finding that blood sugar control has become much harder over the last several months. Riley's endo thinks that the "honeymoon" (what a stupid word for it) has finally ended for good. This means his pancreas doesn't help out at all anymore.
It just makes me want to cry. But, I won't. Past experience tells me it won't do any good.
Friday, December 05, 2008
Head or Heart (or kidneys, or eyes, or...)
Every parent wants what’s best for their child. You want them to grow up strong and healthy. You want them to have a strong and healthy body. You also want them to be mentally strong, not just smart, but mentally healthy too. You want them to have high self-esteem. You don’t want them to feel isolated or different.
The physical part isn’t too hard with most kids. You make sure they eat healthy. You make sure they brush their teeth at least twice a day. You take them to the doctor for regular check-ups.
The mental part is a little harder. But, most kids just want to be treated like everyone else. They want to belong, fit in. They don’t want to be singled out amongst their peers.
Throw diabetes into the mix and it complicates things a bit.
What do you do when keeping your child physically healthy is a detriment to them mentally?
Or, keeping them mentally healthy is a detriment to their physical health?
Parents of kids with diabetes are faced with this dilemma on a daily basis, usually several times a day.
It’s been wearing on me as of late.
Usually if Riley’s sugar is high he will take insulin and skip snack. But, what about when there’s a birthday party at school and his sugar is 350 and the main menu items are cupcakes and ice cream with a side of potato chips?
Should I make him skip the party to keep his body healthy? Or should I let him go on and eat knowing the food is going to send his sugar soaring even higher just so he won’t feel singled out?
I’ve done both. And, I’ve felt guilty about both.
It breaks my heart to think of him sitting at his desk watching everyone else eat their treats. But, it also bothers me to think that his sugar is already that high and, before going down, will probably go higher.
9 times out of 10 if peers are involved I let him go on and eat and just deal with the high later. There are enough things he has to do that make him stand out. I don’t want to add to that.
He’s the only one in his class who pulls out a blood sugar machine before he eats. He’s the only one who sometimes has to sit out at recess because his sugar is low. He’s the only one that the teacher counts his fries before he eats.
Yes, there’s enough already to make him feel different.
Lately, he’s had a lot of highs. I’m guessing he’s going through a growth spurt. I have been increasing basals on a weekly basis for the past several weeks. Still, he sees the 300s at least once a day.
I guess that’s why this has been weighing on me so much lately. When his sugars have been pretty much in range it’s easier to let him have cake and ice cream occasionally even if his sugar is high at the time.
But, now, he’s having all these highs….
It is a horrible feeling when you know whatever decision you make is going to impact your child in a negative way somehow. I’m constantly second-guessing myself. I feel guilty if I let him eat and I feel bad if I don’t.
I don’t know how to solve the problem. A cure, maybe. That would be nice. But, until then what do I do?
The physical part isn’t too hard with most kids. You make sure they eat healthy. You make sure they brush their teeth at least twice a day. You take them to the doctor for regular check-ups.
The mental part is a little harder. But, most kids just want to be treated like everyone else. They want to belong, fit in. They don’t want to be singled out amongst their peers.
Throw diabetes into the mix and it complicates things a bit.
What do you do when keeping your child physically healthy is a detriment to them mentally?
Or, keeping them mentally healthy is a detriment to their physical health?
Parents of kids with diabetes are faced with this dilemma on a daily basis, usually several times a day.
It’s been wearing on me as of late.
Usually if Riley’s sugar is high he will take insulin and skip snack. But, what about when there’s a birthday party at school and his sugar is 350 and the main menu items are cupcakes and ice cream with a side of potato chips?
Should I make him skip the party to keep his body healthy? Or should I let him go on and eat knowing the food is going to send his sugar soaring even higher just so he won’t feel singled out?
I’ve done both. And, I’ve felt guilty about both.
It breaks my heart to think of him sitting at his desk watching everyone else eat their treats. But, it also bothers me to think that his sugar is already that high and, before going down, will probably go higher.
9 times out of 10 if peers are involved I let him go on and eat and just deal with the high later. There are enough things he has to do that make him stand out. I don’t want to add to that.
He’s the only one in his class who pulls out a blood sugar machine before he eats. He’s the only one who sometimes has to sit out at recess because his sugar is low. He’s the only one that the teacher counts his fries before he eats.
Yes, there’s enough already to make him feel different.
Lately, he’s had a lot of highs. I’m guessing he’s going through a growth spurt. I have been increasing basals on a weekly basis for the past several weeks. Still, he sees the 300s at least once a day.
I guess that’s why this has been weighing on me so much lately. When his sugars have been pretty much in range it’s easier to let him have cake and ice cream occasionally even if his sugar is high at the time.
But, now, he’s having all these highs….
It is a horrible feeling when you know whatever decision you make is going to impact your child in a negative way somehow. I’m constantly second-guessing myself. I feel guilty if I let him eat and I feel bad if I don’t.
I don’t know how to solve the problem. A cure, maybe. That would be nice. But, until then what do I do?
Tuesday, December 02, 2008
What do you think?
Our most difficult meal of the day, sugar-wise, has always been breakfast. For some reason, Riley’s carb coverage is the most at breakfast.
Riley eats the same breakfast every morning: ½ cup cereal, ¼ milk (total of 22g carbs). I know cereal is usually a no no for most PWD but Riley’s sugars usually do pretty well. Or, at least they do now.
For a while he ate a Go-tart every morning (25g of carbs). Yes, I know, lots of sugar, little to no protein, but he liked them, they were easy, and his sugars really did OK. Or, they did after a while.
Riley will eat the same cereal for a while until he gets tired of it and wants to change brands. His sugars do fine, after a while.
My point is this, I have found that when Riley switches cereal or he eats something different than he usually does for breakfast his sugar will be high 2 hours later. This will usually happen for 2-3 days. But, if we continue with the same breakfast, eventually, his sugars even out and are just fine 2 hours later.
Thoughts? Does his body get “used to” what he’s eating? Would it work with other meals?
Riley has been eating cereal every morning for a while. I was out of milk this morning, so he ate a Go Tart. He hasn’t had a Go Tart in a while. I totally expect his sugar to be high at his next check, when it is usually in range.
Does this happen with anyone else?
Riley eats the same breakfast every morning: ½ cup cereal, ¼ milk (total of 22g carbs). I know cereal is usually a no no for most PWD but Riley’s sugars usually do pretty well. Or, at least they do now.
For a while he ate a Go-tart every morning (25g of carbs). Yes, I know, lots of sugar, little to no protein, but he liked them, they were easy, and his sugars really did OK. Or, they did after a while.
Riley will eat the same cereal for a while until he gets tired of it and wants to change brands. His sugars do fine, after a while.
My point is this, I have found that when Riley switches cereal or he eats something different than he usually does for breakfast his sugar will be high 2 hours later. This will usually happen for 2-3 days. But, if we continue with the same breakfast, eventually, his sugars even out and are just fine 2 hours later.
Thoughts? Does his body get “used to” what he’s eating? Would it work with other meals?
Riley has been eating cereal every morning for a while. I was out of milk this morning, so he ate a Go Tart. He hasn’t had a Go Tart in a while. I totally expect his sugar to be high at his next check, when it is usually in range.
Does this happen with anyone else?
Friday, November 21, 2008
I Hate Snow
I live in the south. I have always lived in the south. When it snows in the south schools close, businesses close. It's almost like a holiday.
I have worked as a home health nurse for the last 10 years. During those 10 years I learned to despise the snow. While businesses and schools closed, home health did not. Sick people are still sick in the snow.
So, while my family slept peacefully or Riley sat with his nose pressed against the window pane or while my boys had snowball fights in the front yard, I was at work. I even ended up in the ditch one time while trying to see patients in the snow and ice.
When I got my job as a school nurse I told Michael that I can finally learn to love the snow again. Most schools around where I live cancel school not long after the first flake falls. (I know you northerners don't understand. I guess it's just a southern thing.) So, I figured I would no longer have to go to work in the snow and I'd be able to sit home and enjoy it.
I woke up this morning to the most beautiful snowfall. The ground and cars had a nice dusting of snow and it was still snowing pretty hard.
I kept waiting for my phone to ring saying that school was canceled or at least delayed. It never came.
So, I'm at school. It's still snowing. It's been snowing for several hours now.
I still hate snow.
I have worked as a home health nurse for the last 10 years. During those 10 years I learned to despise the snow. While businesses and schools closed, home health did not. Sick people are still sick in the snow.
So, while my family slept peacefully or Riley sat with his nose pressed against the window pane or while my boys had snowball fights in the front yard, I was at work. I even ended up in the ditch one time while trying to see patients in the snow and ice.
When I got my job as a school nurse I told Michael that I can finally learn to love the snow again. Most schools around where I live cancel school not long after the first flake falls. (I know you northerners don't understand. I guess it's just a southern thing.) So, I figured I would no longer have to go to work in the snow and I'd be able to sit home and enjoy it.
I woke up this morning to the most beautiful snowfall. The ground and cars had a nice dusting of snow and it was still snowing pretty hard.
I kept waiting for my phone to ring saying that school was canceled or at least delayed. It never came.
So, I'm at school. It's still snowing. It's been snowing for several hours now.
I still hate snow.
Wednesday, November 19, 2008
Hope, Belief, Pain, and Faith
Today marks 3 years that I have been blogging. My very first post was Riley's diagnosis story. I've shared a lot with you guys since then.
I've shared my pain as well as my joy. I've shared my frustrations and my triumphs. I've participated in memes and probably shared way too much information about myself. You've heard ad nauseum how wonderful Holden and Riley (and Michael) are.
I've vented. I've encouraged. And, sometimes, I've just been silent.
To mark my three years blogging I want to post about something I haven't in a very long time: a cure.
A few days ago the news reported a possible cure for type 1 diabetes. The researchers were able to create a "permanent remission" in mice with diabetes.
I first read about it at one blog and I must say I felt a little jaded. I didn't feel excited by it. I really didn't feel much of anything at all. I commented on the post without trying to sound like a naysayer. Over the years when I've blogged about being excited about a cure I have received comments that tried to squelch that excitement. I don't want to do that. "Never deprive someone of hope-it may be all that they have". But, I felt that three years into this disease I just didn't have the energy to get my hopes up once again.
I read a few more posts and then I read Kerri's post about it. Her post included Brian Williams' broadcast. I watched it with tears in my eyes. Brian Williams seemed so excited. Somehow I felt like maybe he knew something I didn't.
I went on to read the rest of the post and by the end tears were rolling down my face. I have been following Kerri's blog for three years. One of her posts is the reason I ever started blogging in the first place. I've read her posts about a cure before. Most of the time she's very cautiously optimistic. She's lived with type 1 diabetes for 20+ years. It's understandable if she doesn't think about a cure all that often. But, this post was different. This post resonated hope.
I haven't really thought about a cure in a while. I've said before that I could never give up hope. I'm a mother of a child with diabetes. All parents hope for the best for their children. I think the best for Riley would be not to be dependant upon insulin to live. So, I hope one day he won't be.
But, hope and belief are two different things.
I commented on Kerri's post that I wanted to believe. I do. I want to believe that one day Riley will no longer need insulin to live. That he will no longer be attached to a machine. That he will run and run and never go low. That I won't wake up in the middle of the night and go in his room just to make sure he's still breathing. That the black spots on the pads of his fingertips will one day disappear.
I want to believe with every fiber of my being that this research is going to pan out, that Dr. Faustman's research will pan out, that any other research for a cure for type 1 will pan out.
But, I can't.
I don't want to be disappointed again. I guess I'm going with not letting myself believe it will happen and hoping that one day I will be pleasantly surprised when it does.
Belief brings up pain. It is painful for me to think of a Riley without diabetes. Why? Because I may never see that happen. It's easier, less painful somehow, to just believe that he will always have diabetes. It's painful to picture Riley delving into a bowl of ice cream without worrying about the high that will probably come hours later. It's painful to think of him eating all the lasagna he wants. I don't know how to explain it. It's just painful.
I hope for a cure, but I can't see one in the future. I just can't see it.
Writing this post made me think of a familiar Bible verse: "Faith is the substance of things hoped for, the evidence of things not seen." Hebrews 11:1.
While I might not believe right now, I do have faith. I have faith that one day the thing that I've hoped for and the thing I just can't see, will happen.
I've shared my pain as well as my joy. I've shared my frustrations and my triumphs. I've participated in memes and probably shared way too much information about myself. You've heard ad nauseum how wonderful Holden and Riley (and Michael) are.
I've vented. I've encouraged. And, sometimes, I've just been silent.
To mark my three years blogging I want to post about something I haven't in a very long time: a cure.
A few days ago the news reported a possible cure for type 1 diabetes. The researchers were able to create a "permanent remission" in mice with diabetes.
I first read about it at one blog and I must say I felt a little jaded. I didn't feel excited by it. I really didn't feel much of anything at all. I commented on the post without trying to sound like a naysayer. Over the years when I've blogged about being excited about a cure I have received comments that tried to squelch that excitement. I don't want to do that. "Never deprive someone of hope-it may be all that they have". But, I felt that three years into this disease I just didn't have the energy to get my hopes up once again.
I read a few more posts and then I read Kerri's post about it. Her post included Brian Williams' broadcast. I watched it with tears in my eyes. Brian Williams seemed so excited. Somehow I felt like maybe he knew something I didn't.
I went on to read the rest of the post and by the end tears were rolling down my face. I have been following Kerri's blog for three years. One of her posts is the reason I ever started blogging in the first place. I've read her posts about a cure before. Most of the time she's very cautiously optimistic. She's lived with type 1 diabetes for 20+ years. It's understandable if she doesn't think about a cure all that often. But, this post was different. This post resonated hope.
I haven't really thought about a cure in a while. I've said before that I could never give up hope. I'm a mother of a child with diabetes. All parents hope for the best for their children. I think the best for Riley would be not to be dependant upon insulin to live. So, I hope one day he won't be.
But, hope and belief are two different things.
I commented on Kerri's post that I wanted to believe. I do. I want to believe that one day Riley will no longer need insulin to live. That he will no longer be attached to a machine. That he will run and run and never go low. That I won't wake up in the middle of the night and go in his room just to make sure he's still breathing. That the black spots on the pads of his fingertips will one day disappear.
I want to believe with every fiber of my being that this research is going to pan out, that Dr. Faustman's research will pan out, that any other research for a cure for type 1 will pan out.
But, I can't.
I don't want to be disappointed again. I guess I'm going with not letting myself believe it will happen and hoping that one day I will be pleasantly surprised when it does.
Belief brings up pain. It is painful for me to think of a Riley without diabetes. Why? Because I may never see that happen. It's easier, less painful somehow, to just believe that he will always have diabetes. It's painful to picture Riley delving into a bowl of ice cream without worrying about the high that will probably come hours later. It's painful to think of him eating all the lasagna he wants. I don't know how to explain it. It's just painful.
I hope for a cure, but I can't see one in the future. I just can't see it.
Writing this post made me think of a familiar Bible verse: "Faith is the substance of things hoped for, the evidence of things not seen." Hebrews 11:1.
While I might not believe right now, I do have faith. I have faith that one day the thing that I've hoped for and the thing I just can't see, will happen.
Tuesday, November 18, 2008
It Could Have Been Worse
As I said previously Holden's first basketball game was Friday. Everything was going fine. I've kept stats during the games for the last few years. This year I said I wasn't going to do it. Since it is Holden's last year I just wanted to be able to sit and enjoy the game. So, I was sitting and enjoying the game.
About a minute or two into the game Holden ran into a player from the opposing team. I saw him grab his left knee and fall down. I was up from my seat and headed out of the stands before he ever really hit the floor.
The AD helped him limp off the floor. By the time he got to his bench I was right beside him. I assessed the situation. His knee didn't look too bad. It was hurting him but it wasn't swelling up or anything. I got him up walking on it. I knew he didn't need to let it get stiff. He's had a lot of joint injuries over the years and I've learned that a very important thing is to use the joint even if it hurts.
He jogged up and down the halls a bit and jumped up and down and decided he was OK to play. Since it wasn't swelling I let him go back in. He sat out the whole first half but at half time he was back on the court. He wasn't limping and was able to keep up with the rest of the players.
After the game the pain started. When he woke up Saturday morning it was a little puffy. I let him call into work. He works as a bagger at a local grocery store and I thought it was probably best that he not stand in one place on a hard floor all day.
He kept ice on it over the weekend. The swelling went down. Sunday he was still in a little pain and said it felt stiff.
Yesterday I decided that since it was still bothering him I thought he should go have it checked out before going back out on the court for practice.
We went to the orthopaedist yesterday. He said that Holden had dislocated his knee cap during the game but fortunately it had popped itself back in. But, to dislocate your knee cap you have to tear some of the soft tissue around your knee.
Because of this he told Holden he could not practice or play basketball for 2 weeks. He will have to take physical therapy for two weeks and then when he is released to play again he will have to wear a knee brace.
Holden wasn't too happy. But, I told him it could be worse. He could be out the whole season.
But, I am familiar with how he feels. I broke my hand playing basketball during my senior year of high school. I was out for 4 weeks. It's no fun sitting on the sidelines and wanting to be out there helping your team but knowing there's nothing you can do.
I keep telling myself it could have been so much worse.
I'm familiar with telling myself that too.
About a minute or two into the game Holden ran into a player from the opposing team. I saw him grab his left knee and fall down. I was up from my seat and headed out of the stands before he ever really hit the floor.
The AD helped him limp off the floor. By the time he got to his bench I was right beside him. I assessed the situation. His knee didn't look too bad. It was hurting him but it wasn't swelling up or anything. I got him up walking on it. I knew he didn't need to let it get stiff. He's had a lot of joint injuries over the years and I've learned that a very important thing is to use the joint even if it hurts.
He jogged up and down the halls a bit and jumped up and down and decided he was OK to play. Since it wasn't swelling I let him go back in. He sat out the whole first half but at half time he was back on the court. He wasn't limping and was able to keep up with the rest of the players.
After the game the pain started. When he woke up Saturday morning it was a little puffy. I let him call into work. He works as a bagger at a local grocery store and I thought it was probably best that he not stand in one place on a hard floor all day.
He kept ice on it over the weekend. The swelling went down. Sunday he was still in a little pain and said it felt stiff.
Yesterday I decided that since it was still bothering him I thought he should go have it checked out before going back out on the court for practice.
We went to the orthopaedist yesterday. He said that Holden had dislocated his knee cap during the game but fortunately it had popped itself back in. But, to dislocate your knee cap you have to tear some of the soft tissue around your knee.
Because of this he told Holden he could not practice or play basketball for 2 weeks. He will have to take physical therapy for two weeks and then when he is released to play again he will have to wear a knee brace.
Holden wasn't too happy. But, I told him it could be worse. He could be out the whole season.
But, I am familiar with how he feels. I broke my hand playing basketball during my senior year of high school. I was out for 4 weeks. It's no fun sitting on the sidelines and wanting to be out there helping your team but knowing there's nothing you can do.
I keep telling myself it could have been so much worse.
I'm familiar with telling myself that too.
Friday, November 14, 2008
Ozzy Osbourne Makes Me Cry
Driving into work this morning I was listening to a local radio station that has a segment called the Friday Morning Weekend Blast-Off. They play songs from any genre of music that is requested by their listeners. Most of the songs are usually older songs.
As I turned down the road my school is on I heard the familiar beat of "Mambo No. 5". Songs have a way of evoking memories, for me at least. That particular song brought back memories of Holden playing baseball in his younger days. He was 7 years old when that song became popular. While I'm not a fan of the song, I have memories of it and a New York Yankee version being played in between innings of Holden's baseball games.
These are happy memories for me, but I began to blink back tears. I started thinking of how that was 9 years ago and yet it seems like yesterday. Just yesterday my boy was playing little league baseball and now, he's going to be going away to college in less than a year. Much like diabetes is always somewhere in my mind, so is the thought of Holden graduating and going off to college.
His senior year is flying by with a speed that has given me whip lash. It's already the middle of November. I feel like time is flying by and no matter how hard I try to reach out a grasp the reigns to put on the brakes a bit, they slip through my hands. I want to slow it all down and give myself time to enjoy every moment, to make every moment last longer.
Holden's first basketball game of the season is tonight. I have lived for basketball season since Holden was in the 7th grade. While this time of the year is hectic, I love every minute of it. I played basketball in junior high and high school. I loved playing it then and I love watching my son play it now.
I have been looking forward to this game all week. It's a little crazy how excited I was about it. Last night, Holden came in after practice and laid his basketball uniforms across the rocking chair. He sat his basketball shoes down in the floor and went in the kitchen to get a drink. I looked at the uniform and the shoes and suddenly my excitement turned to sadness.
I guess it hit me that this is the beginning of the end.
As I approached my school this morning another song came over the airways. The familiar opening guitar riff from Ozzy Osbourne's "Crazy Train" filled my car. I was flooded by memories of Holden's basketball team warming up to that song before games. And, I started to cry, honest to goodness tears.
As I was crying I was thinking of how stupid it made me feel. For goodness sakes, there are much worse things in the world than my son going away to college. But, at the moment, I couldn't really think of one.
I knew Holden's senior year was going to be hard, but I had no idea how hard. I now know I'm in for a rough ride.
When Ozzy Osbourne makes you cry you know you have problems.
As I turned down the road my school is on I heard the familiar beat of "Mambo No. 5". Songs have a way of evoking memories, for me at least. That particular song brought back memories of Holden playing baseball in his younger days. He was 7 years old when that song became popular. While I'm not a fan of the song, I have memories of it and a New York Yankee version being played in between innings of Holden's baseball games.
These are happy memories for me, but I began to blink back tears. I started thinking of how that was 9 years ago and yet it seems like yesterday. Just yesterday my boy was playing little league baseball and now, he's going to be going away to college in less than a year. Much like diabetes is always somewhere in my mind, so is the thought of Holden graduating and going off to college.
His senior year is flying by with a speed that has given me whip lash. It's already the middle of November. I feel like time is flying by and no matter how hard I try to reach out a grasp the reigns to put on the brakes a bit, they slip through my hands. I want to slow it all down and give myself time to enjoy every moment, to make every moment last longer.
Holden's first basketball game of the season is tonight. I have lived for basketball season since Holden was in the 7th grade. While this time of the year is hectic, I love every minute of it. I played basketball in junior high and high school. I loved playing it then and I love watching my son play it now.
I have been looking forward to this game all week. It's a little crazy how excited I was about it. Last night, Holden came in after practice and laid his basketball uniforms across the rocking chair. He sat his basketball shoes down in the floor and went in the kitchen to get a drink. I looked at the uniform and the shoes and suddenly my excitement turned to sadness.
I guess it hit me that this is the beginning of the end.
As I approached my school this morning another song came over the airways. The familiar opening guitar riff from Ozzy Osbourne's "Crazy Train" filled my car. I was flooded by memories of Holden's basketball team warming up to that song before games. And, I started to cry, honest to goodness tears.
As I was crying I was thinking of how stupid it made me feel. For goodness sakes, there are much worse things in the world than my son going away to college. But, at the moment, I couldn't really think of one.
I knew Holden's senior year was going to be hard, but I had no idea how hard. I now know I'm in for a rough ride.
When Ozzy Osbourne makes you cry you know you have problems.
World Diabetes Day (Why It's So Important)
Today is World Diabetes Day. I have other things on my mind this morning and I may blog about that later, but I couldn't let this very important day go by without putting in a little effort myself. Because no matter what else might be going on in my life, diabetes is always there. It always has a place in my heart and in my mind.
Below is an excerpt from an email I received about WDD. It is powerful and says things better than I can, so I copied it for you to read. After the email I've added a few thoughts of my own.
Whatever you are doing on World Diabetes Day, take just a moment to consider the facts behind the campaign:
** Every 10 seconds a person dies from diabetes-related causes.
** Every 10 seconds two people develop diabetes.
** Over 250 million people live with diabetes worldwide. In 2025, this figure will reach 380 million.
** Over 500,000 children under age 15 worldwide live with type 1 diabetes.
** More than 200 children a day develop type 1 diabetes.
** In developing countries, close to 75,000 children live with diabetes in desperate circumstances.
** Type 1 diabetes is increasing fastest in pre-school children, at a rate of 5% each year.
** Type 2 diabetes has been reported in children as young as eight.
** Type 2 diabetes affects children in both developed and developing countries.
A few reasons why we're here today: World diabetes Day is an action-oriented campaign in support of people affected by diabetes around the world. The campaign is inspired by issues of paramount importance to people with diabetes and their families. Here are some of the stories that motivate us. (All names in the stories below have been changed to protect the identities of the individuals involved.
Sachin's story : Sachin is a 13-year-old boy with type 1 diabetes and pulmonary tuberculosis. His diabetes is not under control. Most of the time his blood sugars range from 300 – 500 mg/dl (16.5 – 27.5 mmol/L). He usually gets up multiple times during the night to visit the bathroom. Some nights he wakes up with low blood sugar, which terrifies him. Sachin has no means to check his blood sugar. He sees a local physician who has never before treated a child with diabetes. The government of Sachin's country have no plans to subsidize the cost of insulin for children with type 1 diabetes. This means that the greatest obstacle that young Sachin and his family must face is how to meet the combined cost of his tuberculosis medicine and the insulin he needs to survive.
Mollie's story: Mollie is mother to two girls with type 1 diabetes (13-year-old Rebecca and 5-year-old Rose). For Mollie, diabetes brings new challenges every day as she takes care of her girls. School is the hardest thing for Mollie, Rebecca and Rose. Neither of the girls' schools has a nurse and neither school can provide the supervision to allow Rebecca and Rose to take shots and test their blood sugar levels. As a consequence, Mollie has had to quit her job to stay home and take care of the two girls. She visits the school where Rose is in kindergarten at least 3-4 times a day to check her daughter's sugar levels and give her insulin. Mollie's own mother is a teacher where Rebecca goes to school, a blessing which keeps Mollie from running between two schools all day.
Pablo's story: In March this year, Pablo started to experience the classic signs of diabetes. He needed to urinate frequently and was thirsty all the time, he was extremely tired, losing weight and found it difficult to concentrate. His vision became blurred. On top of these symptoms, he got an eye infection that would not go away. Pablo did not think about diabetes. He was not familiar with the warning signs and thought that diabetes was something not very serious that happened to old people. Soon he became very unwell, unable even to stand by himself. Living alone and at a distance from his family, he had no support. He couldn't pull the strength together to contact his loved ones. The young man watched on helpless as his condition got worse day by day. In April, a fortuitous visit from Pablo's mother resulted in an immediate trip to a nearby hospital, where blood tests showed that Pablo's sugar levels were dangerously high. At this point, the young man was so weak that he could no longer speak. After four days in hospital, Paco was started on insulin and told that he would need multiple injections every day of his life or face certain death. The financial consequences of this news were devastating. The hospital visit that had saved his life now threatened to leave the young man destitute and presented him with an uncertain future. He would need to quit his studies immediately.
Robert's story: One day Robert, a young man with type 1 diabetes, became dizzy on the way to his university class. He rushed into the dining hall to grab some juice but it was too late. He blacked-out, collapsing into the juice machine, smashing it to pieces and badly cutting himself in the process. Robert came round as the police arrived on the scene. Assuming Robert was drunk, the police refused his cries for juice as he lay on the ground bleeding and confused. They held him down and asked him over and over for his social security number and home address. Robert's hypo was so severe that he could hardly remember his own name let alone deal with the situation unfolding around him. He was overcome with the sense that he was going to die if he did not get something sweet and began screaming in the middle of the packed dining hall "I NEED JUICE! GIVE ME JUICE!" Robert could hear people in the background murmuring "He's crazy, why does he want juice?"
Don't ignore diabetes! The light shines 900 strong. Diabetes has spent too long in the shadows. Despite the enormity and severity of the pandemic, the disease is often overlooked by politicians, misunderstood by the mass media and shunned by the major donors. As a result, it has flown in under the radar. Yet the global diabetes community refuses to let the world ignore diabetes. Today, diabetes stakeholders everywhere (the diabetes representative organizations - including all of IDF's more than 200 member associations - the people affected by diabetes and their families, all the diabetes bloggers and committed individuals working diligently for change, the official World Diabetes Day Partners and many others) have united to bring diabetes to light. Today sees the culmination of all our effort. We have come together again to secure an incredible 900 monument lightings to mark our day. Enjoy it. The day belongs to all of us.
Yes, the day belongs to all of us. It doesn't matter what color you are, how old you are, or what country you live in. If you are affected by diabetes in any way,this day if for you.
This day is for all those children/young adults that will receive a diagnosis of Type 1 diabetes today. Their lives will change forever. They will forever be dependant upon synthetic insulin to live.
This day is for those that will be diagnosed with Type 2 diabetes today. They will each have struggles of their own. And, this day is also for those who have already received that diagnosis.
This day is for those kids who have lived with the needle sticks, the lows, and the highs for way too long. For those kids (and adults) who don't ever remember a day where they were not stuck with a needle.
This day is also for the family members of these people. It is for the parents, siblings, spouses, significant others, aunts, uncles, grandparents who see what this disease does to their loved ones and feel powerless to stop it.
No matter what is going on in your life today, take a moment to stop and think about the millions upon millions of people who are affected by diabetes every day. Take a moment to realize how devastating it is. Take a moment to tell at least one person why today is so important for everyone, why it's so important to you.
It is so important to me because my son was diagnosed with Type 1 diabetes when he was 3 years old. He is one of those that will never remember a day without a needle stick. He will never know the freedom of opening a kitchen cabinet and pulling out whatever he wants to eat without first weighing in his head what it might do to his sugars. He will never play sports without thinking about the delicate balancing act of exercise and insulin.
To those of you who organized this day, thank you. There are not words enough to express my gratitude. I believe that there is power in numbers. We have the numbers and this day gives us a way to exert our power.
Happy WDD to you all.
Below is an excerpt from an email I received about WDD. It is powerful and says things better than I can, so I copied it for you to read. After the email I've added a few thoughts of my own.
Whatever you are doing on World Diabetes Day, take just a moment to consider the facts behind the campaign:
** Every 10 seconds a person dies from diabetes-related causes.
** Every 10 seconds two people develop diabetes.
** Over 250 million people live with diabetes worldwide. In 2025, this figure will reach 380 million.
** Over 500,000 children under age 15 worldwide live with type 1 diabetes.
** More than 200 children a day develop type 1 diabetes.
** In developing countries, close to 75,000 children live with diabetes in desperate circumstances.
** Type 1 diabetes is increasing fastest in pre-school children, at a rate of 5% each year.
** Type 2 diabetes has been reported in children as young as eight.
** Type 2 diabetes affects children in both developed and developing countries.
A few reasons why we're here today: World diabetes Day is an action-oriented campaign in support of people affected by diabetes around the world. The campaign is inspired by issues of paramount importance to people with diabetes and their families. Here are some of the stories that motivate us. (All names in the stories below have been changed to protect the identities of the individuals involved.
Sachin's story : Sachin is a 13-year-old boy with type 1 diabetes and pulmonary tuberculosis. His diabetes is not under control. Most of the time his blood sugars range from 300 – 500 mg/dl (16.5 – 27.5 mmol/L). He usually gets up multiple times during the night to visit the bathroom. Some nights he wakes up with low blood sugar, which terrifies him. Sachin has no means to check his blood sugar. He sees a local physician who has never before treated a child with diabetes. The government of Sachin's country have no plans to subsidize the cost of insulin for children with type 1 diabetes. This means that the greatest obstacle that young Sachin and his family must face is how to meet the combined cost of his tuberculosis medicine and the insulin he needs to survive.
Mollie's story: Mollie is mother to two girls with type 1 diabetes (13-year-old Rebecca and 5-year-old Rose). For Mollie, diabetes brings new challenges every day as she takes care of her girls. School is the hardest thing for Mollie, Rebecca and Rose. Neither of the girls' schools has a nurse and neither school can provide the supervision to allow Rebecca and Rose to take shots and test their blood sugar levels. As a consequence, Mollie has had to quit her job to stay home and take care of the two girls. She visits the school where Rose is in kindergarten at least 3-4 times a day to check her daughter's sugar levels and give her insulin. Mollie's own mother is a teacher where Rebecca goes to school, a blessing which keeps Mollie from running between two schools all day.
Pablo's story: In March this year, Pablo started to experience the classic signs of diabetes. He needed to urinate frequently and was thirsty all the time, he was extremely tired, losing weight and found it difficult to concentrate. His vision became blurred. On top of these symptoms, he got an eye infection that would not go away. Pablo did not think about diabetes. He was not familiar with the warning signs and thought that diabetes was something not very serious that happened to old people. Soon he became very unwell, unable even to stand by himself. Living alone and at a distance from his family, he had no support. He couldn't pull the strength together to contact his loved ones. The young man watched on helpless as his condition got worse day by day. In April, a fortuitous visit from Pablo's mother resulted in an immediate trip to a nearby hospital, where blood tests showed that Pablo's sugar levels were dangerously high. At this point, the young man was so weak that he could no longer speak. After four days in hospital, Paco was started on insulin and told that he would need multiple injections every day of his life or face certain death. The financial consequences of this news were devastating. The hospital visit that had saved his life now threatened to leave the young man destitute and presented him with an uncertain future. He would need to quit his studies immediately.
Robert's story: One day Robert, a young man with type 1 diabetes, became dizzy on the way to his university class. He rushed into the dining hall to grab some juice but it was too late. He blacked-out, collapsing into the juice machine, smashing it to pieces and badly cutting himself in the process. Robert came round as the police arrived on the scene. Assuming Robert was drunk, the police refused his cries for juice as he lay on the ground bleeding and confused. They held him down and asked him over and over for his social security number and home address. Robert's hypo was so severe that he could hardly remember his own name let alone deal with the situation unfolding around him. He was overcome with the sense that he was going to die if he did not get something sweet and began screaming in the middle of the packed dining hall "I NEED JUICE! GIVE ME JUICE!" Robert could hear people in the background murmuring "He's crazy, why does he want juice?"
Don't ignore diabetes! The light shines 900 strong. Diabetes has spent too long in the shadows. Despite the enormity and severity of the pandemic, the disease is often overlooked by politicians, misunderstood by the mass media and shunned by the major donors. As a result, it has flown in under the radar. Yet the global diabetes community refuses to let the world ignore diabetes. Today, diabetes stakeholders everywhere (the diabetes representative organizations - including all of IDF's more than 200 member associations - the people affected by diabetes and their families, all the diabetes bloggers and committed individuals working diligently for change, the official World Diabetes Day Partners and many others) have united to bring diabetes to light. Today sees the culmination of all our effort. We have come together again to secure an incredible 900 monument lightings to mark our day. Enjoy it. The day belongs to all of us.
Yes, the day belongs to all of us. It doesn't matter what color you are, how old you are, or what country you live in. If you are affected by diabetes in any way,this day if for you.
This day is for all those children/young adults that will receive a diagnosis of Type 1 diabetes today. Their lives will change forever. They will forever be dependant upon synthetic insulin to live.
This day is for those that will be diagnosed with Type 2 diabetes today. They will each have struggles of their own. And, this day is also for those who have already received that diagnosis.
This day is for those kids who have lived with the needle sticks, the lows, and the highs for way too long. For those kids (and adults) who don't ever remember a day where they were not stuck with a needle.
This day is also for the family members of these people. It is for the parents, siblings, spouses, significant others, aunts, uncles, grandparents who see what this disease does to their loved ones and feel powerless to stop it.
No matter what is going on in your life today, take a moment to stop and think about the millions upon millions of people who are affected by diabetes every day. Take a moment to realize how devastating it is. Take a moment to tell at least one person why today is so important for everyone, why it's so important to you.
It is so important to me because my son was diagnosed with Type 1 diabetes when he was 3 years old. He is one of those that will never remember a day without a needle stick. He will never know the freedom of opening a kitchen cabinet and pulling out whatever he wants to eat without first weighing in his head what it might do to his sugars. He will never play sports without thinking about the delicate balancing act of exercise and insulin.
To those of you who organized this day, thank you. There are not words enough to express my gratitude. I believe that there is power in numbers. We have the numbers and this day gives us a way to exert our power.
Happy WDD to you all.
Monday, November 10, 2008
Late, as usual (My D-blog Post)
Yesterday was D-blog day. And, I missed it. I don't turn my computer on over the weekends, so please forgive me. Even though I'm late to the party I still wanted to put in my two cents worth.
This is my 3rd D-blog day post. Next week will mark my three year anniversary of blogging. I was in so much pain when I began this journey. Prior to starting my blog I had only read one blog post in my entire life. I didn't even know what blogging was. All I knew was that I needed an outlet for my pain. This blog became my outlet.
Because this blog was my outlet you guys who have been reading from the beginning got a glimpse into my soul. In the beginning I let the anger and pain pour out. I shared my tears and my frustrations on a regular basis. I was overwhelmed, tired, frustrated, and grieving.
Instead of getting comments about how I should just get over it or comments about how I was so negative, I got comments of encouragement. I got internet (((hugs))) and offers of virtual shoulders to cry on. I got empathy and understanding. I met a great group of parents of kids with D. And, then I met the PWDs themselves who gave me a glimpse into what Riley might be feeling.
I met people who knew first-hand what the D-life was all about. And, while they may have not been in the same stage of grief as me, they understood my need to be there.
To all of you guys I have to say thank you for sharing your stories and thank you for reading mine. Thank you for all the hugs, well-wishes, and shared tears.
Anyone else reading this might find this corny and sappy. But, I know you guys (affected by D) won't. I know you guys understand where I'm coming from and why I feel such a strong sense of camaraderie with you all.
Just like you understand the frustration of a sugar of 350 when you've done everything "right". Just like you understand why I go in the bathroom and cry after a bad site change. Just like you understand that sometimes you've just got to vent to move on.
Thanks again guys. I mean that from the bottom of my heart.
This is my 3rd D-blog day post. Next week will mark my three year anniversary of blogging. I was in so much pain when I began this journey. Prior to starting my blog I had only read one blog post in my entire life. I didn't even know what blogging was. All I knew was that I needed an outlet for my pain. This blog became my outlet.
Because this blog was my outlet you guys who have been reading from the beginning got a glimpse into my soul. In the beginning I let the anger and pain pour out. I shared my tears and my frustrations on a regular basis. I was overwhelmed, tired, frustrated, and grieving.
Instead of getting comments about how I should just get over it or comments about how I was so negative, I got comments of encouragement. I got internet (((hugs))) and offers of virtual shoulders to cry on. I got empathy and understanding. I met a great group of parents of kids with D. And, then I met the PWDs themselves who gave me a glimpse into what Riley might be feeling.
I met people who knew first-hand what the D-life was all about. And, while they may have not been in the same stage of grief as me, they understood my need to be there.
To all of you guys I have to say thank you for sharing your stories and thank you for reading mine. Thank you for all the hugs, well-wishes, and shared tears.
Anyone else reading this might find this corny and sappy. But, I know you guys (affected by D) won't. I know you guys understand where I'm coming from and why I feel such a strong sense of camaraderie with you all.
Just like you understand the frustration of a sugar of 350 when you've done everything "right". Just like you understand why I go in the bathroom and cry after a bad site change. Just like you understand that sometimes you've just got to vent to move on.
Thanks again guys. I mean that from the bottom of my heart.
Friday, November 07, 2008
There are a lot of things swirling around in my brain today. None of them really have to do with diabetes.
I've been under an undue amount of stress at work. On top of that my Dad just got out of the hospital yesterday. He was in there for a week with pneumonia. Because of his cancer and chemo and radiation and the fact that he used to smoke (16 years ago) this pneumonia was really kicking his butt. The hospital he was in was a little over an hour away. My mom never left his side. I went back and forth every day (except one) to see him and help my mom.
Handling the every day stresses of being a mom to two kids and working full time is overwhelming sometimes, but when you throw other family stresses into the mix it sometimes seems almost unbearable.
On the upside, my work stresses have eased up (read: irate parent is no longer irate). And, my dad is home and doing much better. He has finished chemo and has his last radiation treatment today.
I'm hoping that life will now return to normal or at least my kind of normal. That means blood sugars and site changes, basketball games, soccer games, senior stuff, church and what not.
Because I really don't feel like thinking anymore I am going to do a meme. I think you're supposed to answer with just one word, but I'm going to be a little more detailed.
Have a great weekend everyone!
1. Where is your cell phone? In my pocket. I'm not supposed to have it at work, but that is how Riley's teacher reaches me if she needs me.
2. Your significant other? My hubby, Michael. I miss him. I haven't been able to spend much time with him lately.
3. Your Hair? Dark Brown
4. Your Skin? not my favorite feature
5. Your mother? Thelma and an awesome person
6. Your favorite thing? My kids
7. Your dream last night? Very, very weird. I dreamt that I had diabetes and I was sick and in a hospital bed. My site needed changing and I was too sick to do it. I got mad at Michael because he wouldn't do it for me. The nurse came in and did it for me. The nurse was Vince Vaughn and he was mean and creepy. I don't usually remember my dreams.
8. Your favorite drink? Mountain Dew
9. Your dream/goal? To own a house
10. The room you’re in? office
11. Your ex? sore subject
12. Your fear? death of one of my children
13.Where do you want to be in 6 years? somewhere else
14.Where were you last night? home (for a change)
15.What you’re not? dishonest
16.Muffins? blueberry please
17.One of your wish list items? money
18.Where you grew up? North Carolina
19.The last thing you did? gave a student her inhaler
20.What are you wearing? nursing uniform
21.Your TV? have no idea what brand it is
22.Your pets? cat: Sallie Mae, dog: Grace, and fish: Nemo
23. Your computer? HP (work), Dell (at home)
24. Your life? blessed
25. Your mood? Tired
26. Missing someone? not at the moment
27. Your car? Pontiac Vibe
28. Something you’re not wearing? watch
29. Favorite Store? I don't have one. I hate to shop anywhere.
30. Your summer? nice and relaxing (I have summers off now.)
31. Like someone? Dr. House
32. Your favorite color? yellow
33. When is the last time you laughed? Really, really laughed? I don't know. But, Holden makes me chuckle on a daily basis.
34. Last time you cried? Tuesday when my mom called to update me on how my dad was doing
35. Who will respond to this? probably no one
36. Who’s answers are you anxious to see? whoever decides to participate
I've been under an undue amount of stress at work. On top of that my Dad just got out of the hospital yesterday. He was in there for a week with pneumonia. Because of his cancer and chemo and radiation and the fact that he used to smoke (16 years ago) this pneumonia was really kicking his butt. The hospital he was in was a little over an hour away. My mom never left his side. I went back and forth every day (except one) to see him and help my mom.
Handling the every day stresses of being a mom to two kids and working full time is overwhelming sometimes, but when you throw other family stresses into the mix it sometimes seems almost unbearable.
On the upside, my work stresses have eased up (read: irate parent is no longer irate). And, my dad is home and doing much better. He has finished chemo and has his last radiation treatment today.
I'm hoping that life will now return to normal or at least my kind of normal. That means blood sugars and site changes, basketball games, soccer games, senior stuff, church and what not.
Because I really don't feel like thinking anymore I am going to do a meme. I think you're supposed to answer with just one word, but I'm going to be a little more detailed.
Have a great weekend everyone!
1. Where is your cell phone? In my pocket. I'm not supposed to have it at work, but that is how Riley's teacher reaches me if she needs me.
2. Your significant other? My hubby, Michael. I miss him. I haven't been able to spend much time with him lately.
3. Your Hair? Dark Brown
4. Your Skin? not my favorite feature
5. Your mother? Thelma and an awesome person
6. Your favorite thing? My kids
7. Your dream last night? Very, very weird. I dreamt that I had diabetes and I was sick and in a hospital bed. My site needed changing and I was too sick to do it. I got mad at Michael because he wouldn't do it for me. The nurse came in and did it for me. The nurse was Vince Vaughn and he was mean and creepy. I don't usually remember my dreams.
8. Your favorite drink? Mountain Dew
9. Your dream/goal? To own a house
10. The room you’re in? office
11. Your ex? sore subject
12. Your fear? death of one of my children
13.Where do you want to be in 6 years? somewhere else
14.Where were you last night? home (for a change)
15.What you’re not? dishonest
16.Muffins? blueberry please
17.One of your wish list items? money
18.Where you grew up? North Carolina
19.The last thing you did? gave a student her inhaler
20.What are you wearing? nursing uniform
21.Your TV? have no idea what brand it is
22.Your pets? cat: Sallie Mae, dog: Grace, and fish: Nemo
23. Your computer? HP (work), Dell (at home)
24. Your life? blessed
25. Your mood? Tired
26. Missing someone? not at the moment
27. Your car? Pontiac Vibe
28. Something you’re not wearing? watch
29. Favorite Store? I don't have one. I hate to shop anywhere.
30. Your summer? nice and relaxing (I have summers off now.)
31. Like someone? Dr. House
32. Your favorite color? yellow
33. When is the last time you laughed? Really, really laughed? I don't know. But, Holden makes me chuckle on a daily basis.
34. Last time you cried? Tuesday when my mom called to update me on how my dad was doing
35. Who will respond to this? probably no one
36. Who’s answers are you anxious to see? whoever decides to participate
Tuesday, October 28, 2008
Angry
I'm angry at diabetes right now. I'm so angry at this stupid disease that makes my child say,"Mom, I hate diabetes. I just want to be normal like everyone else."
I'm angry at the A1C machine that flashed a 7.8 up on the screen at Riley's appointment yesterday.
I'm angry at my cell phone when it rings and the word "Teacher" appears on the screen. That is never a good thing.
I'm angry that when she called it was to tell me that Riley's sugar was 404.
I'm angry that I never get a night of uninterrupted sleep.
I'm angry that Riley's assistant teacher didn't call me last week when they had a birthday party. Instead of letting him have a cupcake(his sugar was 108). She packed it in his book bag for later. He sat and watched everyone else in class eat their cupcake.
I'm angry that my child has to be singled out for anything.
I'm angry that I don't have diabetes instead of Riley.
I'm angry at trying so hard to get it right only to see numbers of 200 and 300.
Mostly, I'm angry with myself for letting any of this make me angry.
Most days I'm fine. Most days I go with the flow. But, today, I'm angry. I don't want to be angry. But, diabetes has a way of making me feel things I don't want to feel.
I'm angry at the A1C machine that flashed a 7.8 up on the screen at Riley's appointment yesterday.
I'm angry at my cell phone when it rings and the word "Teacher" appears on the screen. That is never a good thing.
I'm angry that when she called it was to tell me that Riley's sugar was 404.
I'm angry that I never get a night of uninterrupted sleep.
I'm angry that Riley's assistant teacher didn't call me last week when they had a birthday party. Instead of letting him have a cupcake(his sugar was 108). She packed it in his book bag for later. He sat and watched everyone else in class eat their cupcake.
I'm angry that my child has to be singled out for anything.
I'm angry that I don't have diabetes instead of Riley.
I'm angry at trying so hard to get it right only to see numbers of 200 and 300.
Mostly, I'm angry with myself for letting any of this make me angry.
Most days I'm fine. Most days I go with the flow. But, today, I'm angry. I don't want to be angry. But, diabetes has a way of making me feel things I don't want to feel.
Friday, October 17, 2008
What Do You Think?
I need a little help please. Riley has a doctor’s appointment in another week and I’m going to run this by his endo too. In the meantime I want to hear what you guys think.
Since Riley was diagnosed his eating pattern has pretty much been breakfast, snack, lunch, snack, supper, snack. Since school started the morning snack has been eliminated. He eats breakfast around 7:00 then lunch at 11:00. He has snack at around 2:15.
I rearranged basals to accommodate for the new schedule. At first he was low at lunch and high at snack. I did a little more rearranging and had better results for the lunch. Now, he is almost always in range at lunch. But, for snack he is usually in the upper 200s or lower to mid 300s.
I have increased his insulin as much as I’m comfortable doing. I’ve increased his lunch carb coverage a bit. Still, he has these stubborn highs. He’s had a few days where things are pretty good at snack, but most days he’s high.
He has recess in between lunch and snack. You’d think, if anything, he’d go low instead of high after activity. I don’t think he’s going low and rebounding because when he does that the resulting high usually lasts a while and takes several doses of insulin before it comes down. These highs come down just fine with insulin. By supper he’s normally back in range.
His teacher called me on Tuesday to let me know how great his sugars had been: 120 at lunch and 87 at snack. She was thrilled and so was I. Riley was out of school Monday. Holden had him eat on his usual schedule and his sugars were just fine. In addition, he got out ½ a day on Friday. His lunchtime sugar was great as was his snack time sugar.
It seems that when he is not in school his snack time sugar is just fine. So, what is it about school that’s causing the rise in his sugar? It is not what he eats at school. Riley is allowed to eat from the cafeteria 2 days a week. The other days he takes his lunch. The highs occur whether he eats a lunch from home or not. Also, when he eats at school but gets out early (early release is at 11:40) his sugar is fine at 2:15.
Any ideas as to what is going on? His teacher called me on Wednesday. His snack time sugar was 345. He had PE prior to snack and she said they had run around the football field several times so she was afraid that he would go low. Instead he was high. She also said that the day before when he his sugar was good at snack that they had not been outside to play at all.
I’m at a loss as to what to do next. Do I keep increasing his basal from 11-2? Right now it is at 0.400 units per hour. That’s the highest basal he’s ever had. On the weekends when he’s not in school his basal at the same time is 0.275 units per hour.
I’ve told his teacher to start having him check his sugar before and after recess to see if that tells me anything. Do you guys have any other advice?
Since Riley was diagnosed his eating pattern has pretty much been breakfast, snack, lunch, snack, supper, snack. Since school started the morning snack has been eliminated. He eats breakfast around 7:00 then lunch at 11:00. He has snack at around 2:15.
I rearranged basals to accommodate for the new schedule. At first he was low at lunch and high at snack. I did a little more rearranging and had better results for the lunch. Now, he is almost always in range at lunch. But, for snack he is usually in the upper 200s or lower to mid 300s.
I have increased his insulin as much as I’m comfortable doing. I’ve increased his lunch carb coverage a bit. Still, he has these stubborn highs. He’s had a few days where things are pretty good at snack, but most days he’s high.
He has recess in between lunch and snack. You’d think, if anything, he’d go low instead of high after activity. I don’t think he’s going low and rebounding because when he does that the resulting high usually lasts a while and takes several doses of insulin before it comes down. These highs come down just fine with insulin. By supper he’s normally back in range.
His teacher called me on Tuesday to let me know how great his sugars had been: 120 at lunch and 87 at snack. She was thrilled and so was I. Riley was out of school Monday. Holden had him eat on his usual schedule and his sugars were just fine. In addition, he got out ½ a day on Friday. His lunchtime sugar was great as was his snack time sugar.
It seems that when he is not in school his snack time sugar is just fine. So, what is it about school that’s causing the rise in his sugar? It is not what he eats at school. Riley is allowed to eat from the cafeteria 2 days a week. The other days he takes his lunch. The highs occur whether he eats a lunch from home or not. Also, when he eats at school but gets out early (early release is at 11:40) his sugar is fine at 2:15.
Any ideas as to what is going on? His teacher called me on Wednesday. His snack time sugar was 345. He had PE prior to snack and she said they had run around the football field several times so she was afraid that he would go low. Instead he was high. She also said that the day before when he his sugar was good at snack that they had not been outside to play at all.
I’m at a loss as to what to do next. Do I keep increasing his basal from 11-2? Right now it is at 0.400 units per hour. That’s the highest basal he’s ever had. On the weekends when he’s not in school his basal at the same time is 0.275 units per hour.
I’ve told his teacher to start having him check his sugar before and after recess to see if that tells me anything. Do you guys have any other advice?
Monday, October 06, 2008
Three Years Chained
Three years ago today was the worst day of my entire life.
In some ways it seems like it was so long ago. I don’t remember what it feels like to sleep an entire night through. I don’t remember what it is like to let Riley eat without counting carbs. I don’t remember what it’s like not to leave the house without a bag of supplies. I don’t remember watching him run around without worrying that his sugar will drop. It seems like he’s had diabetes for forever.
At least it seems that way most of the time. I just go on with the day to day of living most of the time. Diabetes has intermingled itself into the fabric of out lives. I’ve gotten so used to it being around that most of the time it seems like it’s barely there.
But, as Riley’s anniversary has approach it’s been on my mind more. The winces he makes when I prick his finger are more noticeable. The black marks on his fingertips stand out more. His supply bag seems a little heavier. The insulin in the refrigerator door seems out of place. The tubing sticking out of his waistband is a painful reminder of what he faces every day.
I can’t help but wonder what life would be like if he had never been diagnosed. There is no way to know if diabetes has shaped his personality. And, if it has, has it shaped it for the better or the worse?
Would my family be happier if Riley had never been diagnosed? Or are we happier because we are more thankful for the little things? Would we go more places and do more things? Or are we more determined to do things now than we would have been had he never been diagnosed? Would I be stronger if diabetes had never entered our lives? Would I be weaker?
I’ll never really know the answer to these questions.
What I do know is that I wouldn’t change one thing about my little man. Whether diabetes has shaped his personality or not, I wouldn’t change a thing about him. He’s wonderful and unique. He’s understanding (most of the time) and has a really good heart.
I also know that my family is a happy one. We’ve had our share of ups and downs. And, while my stress level is particularly high right now, I can say I am truly happy. I have two wonderful kids and a husband who loves me unconditionally. Everything else is just icing on the cake.
I feel like we pretty much go and do what we want (or whatever money constraints will allow). I’m not sure if diabetes has made us more active, but it certainly hasn’t slowed us down.
The last question is the kicker. Am I stronger because of diabetes? I know a lot of times I don’t feel strong at all. Sometimes diabetes tries to make me feel weak. Sometimes it succeeds.
Three years ago I cried on a daily basis, not just once, but several times a day. I would lock myself in the bathroom and sob. I would go in to check on Riley before going to bed and while looking at his sweet, sleeping, innocent face I would burst into tears all over again. I can’t even begin to tell you how many nights I cried myself to sleep with my head on Michael’s chest.
It brings tears to my eyes thinking about it. I know he was suffering then too. I was so wrapped up in my own grief that I didn’t really think about what he must be going through. Not only had his son been diagnosed with a chronic disease, his wife had pretty much gone off the deep end.
I know I felt weak then. I remember thinking back then that I had always thought that I was a pretty strong person. Diabetes had shown me how weak I really was. I remember thinking how disappointed I was in myself. I thought I should just be able to snap out of it and move on. I knew I had to be strong for Riley and the rest of my family, but I didn’t know how.
So, I don’t really know how to answer the last question. I don’t know if it even needs an answer. I am who I am. If diabetes had something to do with that, so be it.
Today, I’m just glad we’ve made it to where we are. I am so thankful that three years after the worst day of my life my son is still here. I’m thankful for both of my kids and the rest of my family.
I remember when Riley was first diagnosed I would read posts from other parents talking about how they had “celebrated” their child’s anniversary. I just couldn’t understand how they could commemorate something so terrible. I was convinced than when that day came I would spend my time underneath the bed covers.
The first anniversary was the toughest. But, when it rolled around I realized that I couldn’t sit around and mope. His first anniversary we took him out to a movie. It wasn’t really to celebrate, but more to recognize the day in some way. My heart wasn’t in it, but I was at least going through the motions.
On last year’s anniversary I held Walk of Hope to raise money for a cure. That night we took Riley to a local county fair where he had a blast. I felt that since October 6th was such a significant day that it should be commemorated in some way.
This year we’re going to go do whatever Riley wants to do. This is the first year that I understand why you recognize the anniversary at all.
Tonight I will celebrate. Not because he was diagnosed, but because, three years later he’s happy and healthy. I will celebrate that diabetes hasn’t defeated us. And, I will celebrate that if it has shaped us in any way, it didn’t do such a bad job.
In some ways it seems like it was so long ago. I don’t remember what it feels like to sleep an entire night through. I don’t remember what it is like to let Riley eat without counting carbs. I don’t remember what it’s like not to leave the house without a bag of supplies. I don’t remember watching him run around without worrying that his sugar will drop. It seems like he’s had diabetes for forever.
At least it seems that way most of the time. I just go on with the day to day of living most of the time. Diabetes has intermingled itself into the fabric of out lives. I’ve gotten so used to it being around that most of the time it seems like it’s barely there.
But, as Riley’s anniversary has approach it’s been on my mind more. The winces he makes when I prick his finger are more noticeable. The black marks on his fingertips stand out more. His supply bag seems a little heavier. The insulin in the refrigerator door seems out of place. The tubing sticking out of his waistband is a painful reminder of what he faces every day.
I can’t help but wonder what life would be like if he had never been diagnosed. There is no way to know if diabetes has shaped his personality. And, if it has, has it shaped it for the better or the worse?
Would my family be happier if Riley had never been diagnosed? Or are we happier because we are more thankful for the little things? Would we go more places and do more things? Or are we more determined to do things now than we would have been had he never been diagnosed? Would I be stronger if diabetes had never entered our lives? Would I be weaker?
I’ll never really know the answer to these questions.
What I do know is that I wouldn’t change one thing about my little man. Whether diabetes has shaped his personality or not, I wouldn’t change a thing about him. He’s wonderful and unique. He’s understanding (most of the time) and has a really good heart.
I also know that my family is a happy one. We’ve had our share of ups and downs. And, while my stress level is particularly high right now, I can say I am truly happy. I have two wonderful kids and a husband who loves me unconditionally. Everything else is just icing on the cake.
I feel like we pretty much go and do what we want (or whatever money constraints will allow). I’m not sure if diabetes has made us more active, but it certainly hasn’t slowed us down.
The last question is the kicker. Am I stronger because of diabetes? I know a lot of times I don’t feel strong at all. Sometimes diabetes tries to make me feel weak. Sometimes it succeeds.
Three years ago I cried on a daily basis, not just once, but several times a day. I would lock myself in the bathroom and sob. I would go in to check on Riley before going to bed and while looking at his sweet, sleeping, innocent face I would burst into tears all over again. I can’t even begin to tell you how many nights I cried myself to sleep with my head on Michael’s chest.
It brings tears to my eyes thinking about it. I know he was suffering then too. I was so wrapped up in my own grief that I didn’t really think about what he must be going through. Not only had his son been diagnosed with a chronic disease, his wife had pretty much gone off the deep end.
I know I felt weak then. I remember thinking back then that I had always thought that I was a pretty strong person. Diabetes had shown me how weak I really was. I remember thinking how disappointed I was in myself. I thought I should just be able to snap out of it and move on. I knew I had to be strong for Riley and the rest of my family, but I didn’t know how.
So, I don’t really know how to answer the last question. I don’t know if it even needs an answer. I am who I am. If diabetes had something to do with that, so be it.
Today, I’m just glad we’ve made it to where we are. I am so thankful that three years after the worst day of my life my son is still here. I’m thankful for both of my kids and the rest of my family.
I remember when Riley was first diagnosed I would read posts from other parents talking about how they had “celebrated” their child’s anniversary. I just couldn’t understand how they could commemorate something so terrible. I was convinced than when that day came I would spend my time underneath the bed covers.
The first anniversary was the toughest. But, when it rolled around I realized that I couldn’t sit around and mope. His first anniversary we took him out to a movie. It wasn’t really to celebrate, but more to recognize the day in some way. My heart wasn’t in it, but I was at least going through the motions.
On last year’s anniversary I held Walk of Hope to raise money for a cure. That night we took Riley to a local county fair where he had a blast. I felt that since October 6th was such a significant day that it should be commemorated in some way.
This year we’re going to go do whatever Riley wants to do. This is the first year that I understand why you recognize the anniversary at all.
Tonight I will celebrate. Not because he was diagnosed, but because, three years later he’s happy and healthy. I will celebrate that diabetes hasn’t defeated us. And, I will celebrate that if it has shaped us in any way, it didn’t do such a bad job.
Friday, October 03, 2008
Rico Suave
A couple of days ago I went to pick Riley up at school. No one was home to watch him and Holden had stayed after school for Spirit Club. So, Riley stayed after with Holden and when I got off of work I went and picked him up.
He walked up to me with his book bag in his hand grinning from ear to ear.
"I've got something to show you, Mama."
"Is it something good or is it something bad?"
"It's good, really, really good. No one else in my class has ever gotten this before."
That got me curious. What could it be? He brings home A+ work all the time so I knew it couldn't be that. What could his teacher have given him that no one else in his class had ever gotten?
We only live about 2 minutes from school so I told him I'd look at it when I got home.
We got in the car and he said, "Don't leave yet. I want to show you what I got."
"Can't it wait until we get home?"
"No, I want to show you now."
He unzipped the little pocket on the front of his book bag and pulled out a small slip of paper.
"Oh, this is so good", he said with an evil little grin.
He handed me a slip of paper. On it, in pencil, was a phone number.
"It's E's phone number, Mom. She gave me her phone number!" His eyes were shining.
My six year old got a little girl's digits. E is in Riley's class. She's a cute little girl with long, blond, curly hair. Yeah, he's definitely male.
He's always had a little crush on her and from speaking with E's mom I found out last year that the feeling was mutual, but I never told Riley about it.
But, now, instead of "like" he was using more mature words.
"I'm in love with E and she's in love with me."
I couldn't decide whether to laugh or cry.
"I'm going to call her tonight."
"I don't think so." Call me old fashion but I find it a little inappropriate for six years olds to be calling each other because they are "in love".
I thought that was the end of it.
Every night right before he goes to bed Riley calls my mom and tells her goodnight. He went into his room to call her like he does every night. A little while later I went in to check on him He was just hanging up the phone. I didn't think anything of it.
That is until the phone rang. Michael answered.
"No. I haven't called anyone. "
"Well, maybe my son was playing with the phone, but we didn't call your number. Sorry."
I took the phone from him and checked the caller ID. It was from E's number. My little boy had worked up the nerve to call a girl and when her mom answered he hung up.
Of course, he got in trouble because he had done something that I had specifically told him not to do. We had a conversation about it. And, I let him in on a little secret. I told him that most people have caller ID and that when you call them they know that it's you they called. He told me he didn't know that (obviously).
I put him to bed. When I walked in the living room I couldn't help but smile at Michael. I couldn't believe that Riley had actually worked up the nerve to call her. If he's starting this at six, what am I going to do when he's 13?
When he got home from school yesterday I asked him if he got anymore phone numbers that day.
"No. I gave E's number to B. "
"Why did you do that?"
"Because I don't need all that stress, Mom."
I went in the other room and laughed and laughed. Ah, he's learning at a very early age.
He walked up to me with his book bag in his hand grinning from ear to ear.
"I've got something to show you, Mama."
"Is it something good or is it something bad?"
"It's good, really, really good. No one else in my class has ever gotten this before."
That got me curious. What could it be? He brings home A+ work all the time so I knew it couldn't be that. What could his teacher have given him that no one else in his class had ever gotten?
We only live about 2 minutes from school so I told him I'd look at it when I got home.
We got in the car and he said, "Don't leave yet. I want to show you what I got."
"Can't it wait until we get home?"
"No, I want to show you now."
He unzipped the little pocket on the front of his book bag and pulled out a small slip of paper.
"Oh, this is so good", he said with an evil little grin.
He handed me a slip of paper. On it, in pencil, was a phone number.
"It's E's phone number, Mom. She gave me her phone number!" His eyes were shining.
My six year old got a little girl's digits. E is in Riley's class. She's a cute little girl with long, blond, curly hair. Yeah, he's definitely male.
He's always had a little crush on her and from speaking with E's mom I found out last year that the feeling was mutual, but I never told Riley about it.
But, now, instead of "like" he was using more mature words.
"I'm in love with E and she's in love with me."
I couldn't decide whether to laugh or cry.
"I'm going to call her tonight."
"I don't think so." Call me old fashion but I find it a little inappropriate for six years olds to be calling each other because they are "in love".
I thought that was the end of it.
Every night right before he goes to bed Riley calls my mom and tells her goodnight. He went into his room to call her like he does every night. A little while later I went in to check on him He was just hanging up the phone. I didn't think anything of it.
That is until the phone rang. Michael answered.
"No. I haven't called anyone. "
"Well, maybe my son was playing with the phone, but we didn't call your number. Sorry."
I took the phone from him and checked the caller ID. It was from E's number. My little boy had worked up the nerve to call a girl and when her mom answered he hung up.
Of course, he got in trouble because he had done something that I had specifically told him not to do. We had a conversation about it. And, I let him in on a little secret. I told him that most people have caller ID and that when you call them they know that it's you they called. He told me he didn't know that (obviously).
I put him to bed. When I walked in the living room I couldn't help but smile at Michael. I couldn't believe that Riley had actually worked up the nerve to call her. If he's starting this at six, what am I going to do when he's 13?
When he got home from school yesterday I asked him if he got anymore phone numbers that day.
"No. I gave E's number to B. "
"Why did you do that?"
"Because I don't need all that stress, Mom."
I went in the other room and laughed and laughed. Ah, he's learning at a very early age.
Wednesday, October 01, 2008
I Need a Bigger Bag
When I last wrote Riley had been to the ER because he was having trouble breathing. He got better for a few days and then one Friday as I was pulling into the parking lot at work Holden called and said that Riley was wheezing. I ran in the office, told them I wouldn’t be at work the rest of the day, and drove home. I could hear him wheezing a little, but he wasn’t really having a lot of trouble breathing.
I gave him his rescue inhaler and called the doctor. They wanted to see him. Once there they didn’t hear any wheezing and once again chalked it up to “just one of those things”.
That was almost 2 weeks ago. He hasn’t had any problems breathing since then. Still, I send his inhaler to school every day. I pack it in with his diabetes supplies everywhere we go. I worry that we may one day have to use it again.
I'll just add it to the bag.
I’m starting to get into a groove at my new job. In an earlier post I wrote about a student at my school with diabetes whose mom attended school with her every day. Since then I’ve worked with the mom and the teachers so that the mom was comfortable enough going home. Now, the student comes to my office to receive her insulin. This mom has attended school with her daughter for the last 5 years. I can only imagine how freeing it is for her to be able to go home every day instead of being stuck in a classroom.
Still, I often feel like I’m pulled in too many different directions. I’m so new to being a school nurse that I’m afraid I’m missing something important. Sometimes I’ll have 3 or 4 kids in my office at one time and I’m overwhelmed with how to handle it all.
I'll just add it to the bag.
My dad has started chemo and radiation for his throat cancer. The radiation is giving him a sore throat. The chemo is making him sick. My parents are driving back and forth to radiation every day (2 ½ hours in the car). I can tell it’s starting to wear on them. I worry about them both.
I'll just add it to the bag.
Holden sent in his first college application last night. We’re looking into touring a few college campuses. He’s taking the SAT again on Saturday. I’m excited for him as he starts to test the waters. But, sometimes I’ll steal a glance at him while he’s sitting and watching TV and I want to burst into tears. I can’t believe that next year at this time my baby will be away at college. I can’t even fathom how much I will miss him.
I'll just add it to the bag.
I think I need a bigger bag.
I gave him his rescue inhaler and called the doctor. They wanted to see him. Once there they didn’t hear any wheezing and once again chalked it up to “just one of those things”.
That was almost 2 weeks ago. He hasn’t had any problems breathing since then. Still, I send his inhaler to school every day. I pack it in with his diabetes supplies everywhere we go. I worry that we may one day have to use it again.
I'll just add it to the bag.
I’m starting to get into a groove at my new job. In an earlier post I wrote about a student at my school with diabetes whose mom attended school with her every day. Since then I’ve worked with the mom and the teachers so that the mom was comfortable enough going home. Now, the student comes to my office to receive her insulin. This mom has attended school with her daughter for the last 5 years. I can only imagine how freeing it is for her to be able to go home every day instead of being stuck in a classroom.
Still, I often feel like I’m pulled in too many different directions. I’m so new to being a school nurse that I’m afraid I’m missing something important. Sometimes I’ll have 3 or 4 kids in my office at one time and I’m overwhelmed with how to handle it all.
I'll just add it to the bag.
My dad has started chemo and radiation for his throat cancer. The radiation is giving him a sore throat. The chemo is making him sick. My parents are driving back and forth to radiation every day (2 ½ hours in the car). I can tell it’s starting to wear on them. I worry about them both.
I'll just add it to the bag.
Holden sent in his first college application last night. We’re looking into touring a few college campuses. He’s taking the SAT again on Saturday. I’m excited for him as he starts to test the waters. But, sometimes I’ll steal a glance at him while he’s sitting and watching TV and I want to burst into tears. I can’t believe that next year at this time my baby will be away at college. I can’t even fathom how much I will miss him.
I'll just add it to the bag.
I think I need a bigger bag.
Thursday, September 11, 2008
Running at 120%
Sunday night Riley had a stuffy nose. I gave him some Benadryl at bedtime. He seemed to be OK on Monday.
I didn't have to give him any medicine at bedtime on Monday. He didn't seem stuffy anymore. (Plus, he was thrilled that the tooth ferry would be visiting him for the first time.)
He seemed fine Tuesday morning. When he got home from school my mom called and said he wasn't feeling well. She checked his temperature and it was 99.9 While that isn't too high I told her to go ahead and give him some Ibuprofen.
When I went to pick him up I could tell he didn't feel well. Later that night I was sitting on the couch beside him. I thought I heard some wheezing. I went to the drug store and bought some Mucinex hoping it would help clear him up.
He went to bed about 9:00. He still wasn't feeling well but he hadn't had anymore temperature. I had already packed his book bag to go to school the next day.
At around 9:45 I went in to check his sugar. Something didn't seem right. It took a second for me to realize he was breathing differently. He was breathing very fast. His sugar was on the lower end so I woke him up to give him a few fruit snacks.
His breathing was really concerning me. I kept asking him if he was having trouble breathing. His answers varied. Sometimes he'd say yes and then he'd stay no. He was still half asleep.
I asked Michael to come in and look at him. He agreed that he looked like he was breathing too fast. Then, I noticed he was breathing really hard, like he was having a hard time catching his breath. Michael described it like he was breathing like he had just run a race.
My alarm was growing. I started gathering things together because I was pretty sure we needed to go to the ER. Then, Riley started crying, "I can't breathe." That was it. We left for the ER.
I rode in the back seat with him. He was still breathing hard and fast, but he wasn't gasping for breath or anything. The hospital is about 10 minutes away. When we were a couple of minutes away I realized that when he was talking he would stop after every couple of words and take a deep breath. I was getting really, really concerned.
As we pulled into the hospital parking lot I held his hand and prayed that he would be OK and the hospital staff would be knowledgeable.
Oh, did I mentioned that I checked his sugar on the way and it was 65. He drank a juice box and I made a mental note to check his sugar again in 15 minutes or so.
He has never been very sick. He's had a few ear infections but nothing serious since he was diagnosed. Not only was I worried about his breathing but I was concerned about how they would receive his pump. Would they want to take it off? Would they let me give him insulin myself?
As soon as I told the front desk why we were there they sent us back to triage. As soon as the triage nurse listened to his chest we were whisked back and Riley was almost immediately started on a nebulizer treatment.
He thought it was neat because the mask they used looked like a dinosaur. I thought he looked so frail sitting in that big hospital bed.
When he was in triage I mentioned to the nurse that his sugar had been 65 on the way there. Before I could finish she said, "I'll give him a popsicle or something. But, after the breathing treatment." Um, I don't think so.
I explained to her that he had already drunk a juice and that I just needed to recheck his sugar to make sure it had come up. Once he got settled in his bed I checked his sugar and it was 123.
In addition to a breathing treatment he also received a dose of Prednisone. When the nurse left I looked at Michael and told him that it was going to wreak havoc on his blood sugar. Since I'm a nurse I know that steroids can raise blood sugars in people who don't even have diabetes.
Thirty minutes after the Prednisone he was 293. I pulled out his pump and covertly gave him some insulin. I didn't want to draw too much attention to what I was doing. I didn't want anyone to try and stop me. I told Michael I wasn't giving his diabetes control over to anyone else. They could take care of the breathing and I would take care of the sugars.
Turns out they didn't seem to care. They never checked his sugar once while he was there.
After the breathing treatment they listened to him again. He was moving air a little better but it still wasn't great.
The dinosaur mask went on again and he received another treatment. For the first time in a couple of hours he wasn't struggling to breathe. Of course, through it all he never complained. He kept smiling and talking. Everyone kept commenting on how cute his Spongebob pajamas were.
They did a chest xray, an EKG, and blood work. He never complained, even when he had his blood drawn. When they gave him the Prednisone the nurse tried to chase it with some grape juice. I stopped her and told her he couldn't have that because of his diabetes. She brought him water instead. The nurse commented on how most kids fought it because it tasted so bad. Riley just swallowed it down without one complaint.
She turned to another nurse and said, "He didn't complain at all. He just took it."
I said, "He's used to doing things he doesn't want to because he knows he has to."
Saying it made me proud and sad all at the same time.
His chest xray came back clear. He was breathing fine and not wheezing anymore. The doctor didn't really have an explanation to what had happened. He gave him a dose of antibiotics just in case he had a hidden infection.
We were sent home with an inhaler to use as needed and a prescription for more antibiotics.
I got up every hour and checked his sugar. The Prednisone had him running in the 300 and 400s. He was getting a bolus every hour. His breathing seemed OK.
On Wednesday I thought he was on the mend and I went to work. Before leaving I gave him a dose of Albuterol just in case.
My mom called me two hours later and said he was wheezing again and having trouble breathing. Although it was too early to give him more Albuterol I told her to give it to him anyway.
I was at a meeting an hour an a half away. I made Riley a doctor's appointment for later that afternoon. My parents came and picked me up from the meeting. (I had ridden there in a van with a bunch of other people.)
Once at the doctor's office Riley received another nebulizer treatment. He was still wheezing but not as badly. The doctor wrote a prescription for more Prednisone.
After leaving the doctor's office I called his endo, Dr. M. I told her about the Prednisone. She told me to increase his basal 150%. My mouth dropped open. That was a big increase. But, I trusted her. She said sometimes kids on Prednisone needed to be increased 200%.
I couldn't quite do the 150%. So, Riley's basal is now set at an increase of 120%. While it made me nervous at first it has worked out perfectly. His total daily dose has increased from 12 units a day to about about 20 units a day. That's just crazy. But, He hasn't had a single low and his highest sugar has been 161. His sugars have actually been better on the Prednisone than off.
Last night I ran him at 100% instead of 120. I'll do the same tonight. I plan to send him back to school tomorrow with his inhaler in tow.
The doctors seem to think that this is a one time thing. I really hope so. One chronic disease is enough for me. I don't want to throw asthma into the mix too.
I didn't have to give him any medicine at bedtime on Monday. He didn't seem stuffy anymore. (Plus, he was thrilled that the tooth ferry would be visiting him for the first time.)
He seemed fine Tuesday morning. When he got home from school my mom called and said he wasn't feeling well. She checked his temperature and it was 99.9 While that isn't too high I told her to go ahead and give him some Ibuprofen.
When I went to pick him up I could tell he didn't feel well. Later that night I was sitting on the couch beside him. I thought I heard some wheezing. I went to the drug store and bought some Mucinex hoping it would help clear him up.
He went to bed about 9:00. He still wasn't feeling well but he hadn't had anymore temperature. I had already packed his book bag to go to school the next day.
At around 9:45 I went in to check his sugar. Something didn't seem right. It took a second for me to realize he was breathing differently. He was breathing very fast. His sugar was on the lower end so I woke him up to give him a few fruit snacks.
His breathing was really concerning me. I kept asking him if he was having trouble breathing. His answers varied. Sometimes he'd say yes and then he'd stay no. He was still half asleep.
I asked Michael to come in and look at him. He agreed that he looked like he was breathing too fast. Then, I noticed he was breathing really hard, like he was having a hard time catching his breath. Michael described it like he was breathing like he had just run a race.
My alarm was growing. I started gathering things together because I was pretty sure we needed to go to the ER. Then, Riley started crying, "I can't breathe." That was it. We left for the ER.
I rode in the back seat with him. He was still breathing hard and fast, but he wasn't gasping for breath or anything. The hospital is about 10 minutes away. When we were a couple of minutes away I realized that when he was talking he would stop after every couple of words and take a deep breath. I was getting really, really concerned.
As we pulled into the hospital parking lot I held his hand and prayed that he would be OK and the hospital staff would be knowledgeable.
Oh, did I mentioned that I checked his sugar on the way and it was 65. He drank a juice box and I made a mental note to check his sugar again in 15 minutes or so.
He has never been very sick. He's had a few ear infections but nothing serious since he was diagnosed. Not only was I worried about his breathing but I was concerned about how they would receive his pump. Would they want to take it off? Would they let me give him insulin myself?
As soon as I told the front desk why we were there they sent us back to triage. As soon as the triage nurse listened to his chest we were whisked back and Riley was almost immediately started on a nebulizer treatment.
He thought it was neat because the mask they used looked like a dinosaur. I thought he looked so frail sitting in that big hospital bed.
When he was in triage I mentioned to the nurse that his sugar had been 65 on the way there. Before I could finish she said, "I'll give him a popsicle or something. But, after the breathing treatment." Um, I don't think so.
I explained to her that he had already drunk a juice and that I just needed to recheck his sugar to make sure it had come up. Once he got settled in his bed I checked his sugar and it was 123.
In addition to a breathing treatment he also received a dose of Prednisone. When the nurse left I looked at Michael and told him that it was going to wreak havoc on his blood sugar. Since I'm a nurse I know that steroids can raise blood sugars in people who don't even have diabetes.
Thirty minutes after the Prednisone he was 293. I pulled out his pump and covertly gave him some insulin. I didn't want to draw too much attention to what I was doing. I didn't want anyone to try and stop me. I told Michael I wasn't giving his diabetes control over to anyone else. They could take care of the breathing and I would take care of the sugars.
Turns out they didn't seem to care. They never checked his sugar once while he was there.
After the breathing treatment they listened to him again. He was moving air a little better but it still wasn't great.
The dinosaur mask went on again and he received another treatment. For the first time in a couple of hours he wasn't struggling to breathe. Of course, through it all he never complained. He kept smiling and talking. Everyone kept commenting on how cute his Spongebob pajamas were.
They did a chest xray, an EKG, and blood work. He never complained, even when he had his blood drawn. When they gave him the Prednisone the nurse tried to chase it with some grape juice. I stopped her and told her he couldn't have that because of his diabetes. She brought him water instead. The nurse commented on how most kids fought it because it tasted so bad. Riley just swallowed it down without one complaint.
She turned to another nurse and said, "He didn't complain at all. He just took it."
I said, "He's used to doing things he doesn't want to because he knows he has to."
Saying it made me proud and sad all at the same time.
His chest xray came back clear. He was breathing fine and not wheezing anymore. The doctor didn't really have an explanation to what had happened. He gave him a dose of antibiotics just in case he had a hidden infection.
We were sent home with an inhaler to use as needed and a prescription for more antibiotics.
I got up every hour and checked his sugar. The Prednisone had him running in the 300 and 400s. He was getting a bolus every hour. His breathing seemed OK.
On Wednesday I thought he was on the mend and I went to work. Before leaving I gave him a dose of Albuterol just in case.
My mom called me two hours later and said he was wheezing again and having trouble breathing. Although it was too early to give him more Albuterol I told her to give it to him anyway.
I was at a meeting an hour an a half away. I made Riley a doctor's appointment for later that afternoon. My parents came and picked me up from the meeting. (I had ridden there in a van with a bunch of other people.)
Once at the doctor's office Riley received another nebulizer treatment. He was still wheezing but not as badly. The doctor wrote a prescription for more Prednisone.
After leaving the doctor's office I called his endo, Dr. M. I told her about the Prednisone. She told me to increase his basal 150%. My mouth dropped open. That was a big increase. But, I trusted her. She said sometimes kids on Prednisone needed to be increased 200%.
I couldn't quite do the 150%. So, Riley's basal is now set at an increase of 120%. While it made me nervous at first it has worked out perfectly. His total daily dose has increased from 12 units a day to about about 20 units a day. That's just crazy. But, He hasn't had a single low and his highest sugar has been 161. His sugars have actually been better on the Prednisone than off.
Last night I ran him at 100% instead of 120. I'll do the same tonight. I plan to send him back to school tomorrow with his inhaler in tow.
The doctors seem to think that this is a one time thing. I really hope so. One chronic disease is enough for me. I don't want to throw asthma into the mix too.
Thursday, August 28, 2008
MIA
I think this is the longest I've ever gone without posting. I've thought about posting a lot, but have not made time to do it.
I've been around. I've been reading blogs from time to time and I've commented a little here and there.
Here are some highlights.
* Holden is officially a Senior. I can't believe this is his last year of high school.
* My dad was diagnosed with throat cancer last week. He's going to a lot of doctor appointments. He will be starting radiation soon. I'm worried about him and my mom. The doctors are very optimistic that he will be fine. Still, I worry. I've only got one dad.
* Riley started first grade this week. I went the week before to educate his teacher. He is giving his own insulin this year and doing a great job with it. His teacher is also doing really well with helping him out. Still, I worry about him from time to time throughout the day.
* The school nurse job is going OK. It's more stressful than I thought it would be. I love the kids. It's the parents I don't like dealing with.
* Lately Riley has been saying: "Diabetes is stupid." and "I hate diabetes." Although I agree with him it's still hard to hear him say it.
* The kids starting back to school, my new job, and my dad's recent diagnosis have made the stress build up so much that sometimes it feels like I'm a rubber band being stretched so far that I'm in danger of snapping into.
* I received my school nurse test results today. I passed and am now officially a certified school nurse. The test was hard and I really wasn't sure if I passed or not. I had to pass it to get a raise. But, the raise isn't really a raise. It just puts my salary at what it was when I worked at home health. I had been worrying about what we would do financially if I didn't pass. When I got the results out of the mailbox I did a little dance in the driveway. A goofy, white dance. But, a dance none the less.
* There is a little girl in my school who is in 4th grade. She's had D since she was 2. Her mom goes to school with her every day and spends all day at school. She's afraid to leave her. I'm working with the mom on letting go a little at a time. It's helping the mom that I have a kid with D so I understand where she is coming from. I can't imagine how that mom does it. She really has no life of her own.
* I'm tired and I have a huge headache so I'm going to go now.
If you're still reading I'd love to know. I could use some good comment right about now.
I've been around. I've been reading blogs from time to time and I've commented a little here and there.
Here are some highlights.
* Holden is officially a Senior. I can't believe this is his last year of high school.
* My dad was diagnosed with throat cancer last week. He's going to a lot of doctor appointments. He will be starting radiation soon. I'm worried about him and my mom. The doctors are very optimistic that he will be fine. Still, I worry. I've only got one dad.
* Riley started first grade this week. I went the week before to educate his teacher. He is giving his own insulin this year and doing a great job with it. His teacher is also doing really well with helping him out. Still, I worry about him from time to time throughout the day.
* The school nurse job is going OK. It's more stressful than I thought it would be. I love the kids. It's the parents I don't like dealing with.
* Lately Riley has been saying: "Diabetes is stupid." and "I hate diabetes." Although I agree with him it's still hard to hear him say it.
* The kids starting back to school, my new job, and my dad's recent diagnosis have made the stress build up so much that sometimes it feels like I'm a rubber band being stretched so far that I'm in danger of snapping into.
* I received my school nurse test results today. I passed and am now officially a certified school nurse. The test was hard and I really wasn't sure if I passed or not. I had to pass it to get a raise. But, the raise isn't really a raise. It just puts my salary at what it was when I worked at home health. I had been worrying about what we would do financially if I didn't pass. When I got the results out of the mailbox I did a little dance in the driveway. A goofy, white dance. But, a dance none the less.
* There is a little girl in my school who is in 4th grade. She's had D since she was 2. Her mom goes to school with her every day and spends all day at school. She's afraid to leave her. I'm working with the mom on letting go a little at a time. It's helping the mom that I have a kid with D so I understand where she is coming from. I can't imagine how that mom does it. She really has no life of her own.
* I'm tired and I have a huge headache so I'm going to go now.
If you're still reading I'd love to know. I could use some good comment right about now.
Friday, August 08, 2008
Amen
Riley's overheard prayer:
"Dear God, Grandaddy is a good grandaddy. Thank you for making him my grandaddy. But, he has a sore throat and you are the only one who can heal it. And, please make it so all the children with diabetes will be cured one day."
"Dear God, Grandaddy is a good grandaddy. Thank you for making him my grandaddy. But, he has a sore throat and you are the only one who can heal it. And, please make it so all the children with diabetes will be cured one day."
Friday, August 01, 2008
Help Find a Cure for Type 1 Diabetes
This year's Walk of Hope donations will be given directly to Dr. Faustman's promising research at Mass General Hospital.
To help out my walk and donate click here and click on online donations. Once there, fill in your information and under "my gift is for" select other and type in diabetes type 1- Faustman.
Also, if you don't mind, drop me an email if you donate and let me know the amount. You don't have to tell me who you are. I would just like to know so that I can add it into the total raised from the walk. I would greatly appreciate a donation in any amount.
In the end it all adds up to a cure.
To help out my walk and donate click here and click on online donations. Once there, fill in your information and under "my gift is for" select other and type in diabetes type 1- Faustman.
Also, if you don't mind, drop me an email if you donate and let me know the amount. You don't have to tell me who you are. I would just like to know so that I can add it into the total raised from the walk. I would greatly appreciate a donation in any amount.
In the end it all adds up to a cure.
Saturday, July 26, 2008
I'm Home and a Change in Plans
I just got in the door from the mission trip. It was awesome. I'm way too tired to blog about it now so I'll just say that it was a blessing.
I just wanted to let everyone know that I have decided that the money donated to Walk of Hope this year will be given directly to Dr. Faustman's research rather than going through The Iacocca Foundation.
I didn't want to mislead anyone. I will post a link in the next couple of days so if anyone would like to donate they can.
I just wanted to let everyone know that I have decided that the money donated to Walk of Hope this year will be given directly to Dr. Faustman's research rather than going through The Iacocca Foundation.
I didn't want to mislead anyone. I will post a link in the next couple of days so if anyone would like to donate they can.
Friday, July 18, 2008
Maybe One Day
(This post was actually written a little after midnight. I am just posting it now.)
Riley had an endo appointment today. Everything went OK. But, his A1C has gone up from 7.2 to 7.4. It's not that much of a difference but every time it goes up my heart sinks a little. I feel like I've fallen down on my job.
Dr. M always asks Riley questions. This time she quizzed him on what a low feels like and what he does when his sugar is low. He passed with flying colors. Then she asked, "Is there anything that you would like to do that you feel like you can't do because of diabetes? " Riley shook his head "no".
"Smart kid", she said. I nodded my head in agreement.
Even with his A1C at 7.4 the only changes she made was to decrease his basal at bedtime because I've been running a temp basal a lot at night lately. She said that if that works and I want to try to tweak the A1C then I could slowly start to increase his basals over time to see if that helps.
At the end of the appointment she asked Michael and I if there was anything we weren't doing because of diabetes. We both answered no.
I've learned some things from my smart little man.
Tonight, he taught me another important lesson: never give up hope.
I've been debating about whether or not to have a walk this year. I didn't think I had the strength, the drive. It's stressful and overwhelming and I thought I might just skip it all this year. It brings up emotions in me that I really don't want to deal with.
Since school got out Riley has gone to sleep every night on the couch with his head in my lap. It will be a hard habit to break once school does resume.
We have a nightly bedtime routine. Every night he brushes his teeth and uses the rest room. He tells Michael and Holden goodnight. Then, he goes in his room and gets his pillow off of his bed and an old sleeping bag. He lays his pillow in my lap and lies down and waits for me to wrap him up with the sleeping bag.
He says his prayers: "Now I lay me down to sleep. I pray the Lord my soul to keep. And, if I die before I wake, I pray the Lord my soul to take." Haunting words, really, if you think about them.
Then, I kiss him on his forehead and tell him I love him.
"I love you too Mom"
Me: "Sweet dreams. I'll see you in the morning."
"Sweet dreams. I'll see you in the morning too."
Then, within minutes he's usually asleep.
Tonight after our usual routine he looked up at me and said, "If I had three wishes you know what I'd wish for?" (I'm not sure what has brought up all these wishes lately.)
"I'd wish that Daddy would always be alright. And, that Mama would always be alright."
"That leaves one more wish", I said, holding my breath.
"For my third wish I'd wish that I didn't have diabetes anymore."
It took me a moment to say anything. I had to catch my breath.
"A few days ago you said it wasn't that bad. What changed?"
"I don't know. I just wish it would go away."
"Why?"
"I....I... because....I don't know why. I just want it gone."
"Me too baby. Me too."
"But, first there will have to be a cure that makes my pancreas make insulin again."
"Yes. Maybe one day, OK?"
He nodded his head and closed his eyes. Within seconds he was fast asleep.
The third annual Walk of Hope will be held on October 6, 2008, Riley's 3 year anniversary.
If you'd like to help my baby's wish come true please click here or on the link in my sidebar. Under designation be sure to type in "Walk of Hope". All proceeds will go directly to Dr. Denise Faustman's research at Mass General Hospital (via The Iacocca Foundation).
Thank you for helping us get one step closer to "one day".
Riley had an endo appointment today. Everything went OK. But, his A1C has gone up from 7.2 to 7.4. It's not that much of a difference but every time it goes up my heart sinks a little. I feel like I've fallen down on my job.
Dr. M always asks Riley questions. This time she quizzed him on what a low feels like and what he does when his sugar is low. He passed with flying colors. Then she asked, "Is there anything that you would like to do that you feel like you can't do because of diabetes? " Riley shook his head "no".
"Smart kid", she said. I nodded my head in agreement.
Even with his A1C at 7.4 the only changes she made was to decrease his basal at bedtime because I've been running a temp basal a lot at night lately. She said that if that works and I want to try to tweak the A1C then I could slowly start to increase his basals over time to see if that helps.
At the end of the appointment she asked Michael and I if there was anything we weren't doing because of diabetes. We both answered no.
I've learned some things from my smart little man.
Tonight, he taught me another important lesson: never give up hope.
I've been debating about whether or not to have a walk this year. I didn't think I had the strength, the drive. It's stressful and overwhelming and I thought I might just skip it all this year. It brings up emotions in me that I really don't want to deal with.
Since school got out Riley has gone to sleep every night on the couch with his head in my lap. It will be a hard habit to break once school does resume.
We have a nightly bedtime routine. Every night he brushes his teeth and uses the rest room. He tells Michael and Holden goodnight. Then, he goes in his room and gets his pillow off of his bed and an old sleeping bag. He lays his pillow in my lap and lies down and waits for me to wrap him up with the sleeping bag.
He says his prayers: "Now I lay me down to sleep. I pray the Lord my soul to keep. And, if I die before I wake, I pray the Lord my soul to take." Haunting words, really, if you think about them.
Then, I kiss him on his forehead and tell him I love him.
"I love you too Mom"
Me: "Sweet dreams. I'll see you in the morning."
"Sweet dreams. I'll see you in the morning too."
Then, within minutes he's usually asleep.
Tonight after our usual routine he looked up at me and said, "If I had three wishes you know what I'd wish for?" (I'm not sure what has brought up all these wishes lately.)
"I'd wish that Daddy would always be alright. And, that Mama would always be alright."
"That leaves one more wish", I said, holding my breath.
"For my third wish I'd wish that I didn't have diabetes anymore."
It took me a moment to say anything. I had to catch my breath.
"A few days ago you said it wasn't that bad. What changed?"
"I don't know. I just wish it would go away."
"Why?"
"I....I... because....I don't know why. I just want it gone."
"Me too baby. Me too."
"But, first there will have to be a cure that makes my pancreas make insulin again."
"Yes. Maybe one day, OK?"
He nodded his head and closed his eyes. Within seconds he was fast asleep.
The third annual Walk of Hope will be held on October 6, 2008, Riley's 3 year anniversary.
If you'd like to help my baby's wish come true please click here or on the link in my sidebar. Under designation be sure to type in "Walk of Hope". All proceeds will go directly to Dr. Denise Faustman's research at Mass General Hospital (via The Iacocca Foundation).
Thank you for helping us get one step closer to "one day".
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