(*Warning: This post contains nothing positive. It is born out of frustration, anger, and lack of sleep. If you are looking for something uplifting, you've come to the wrong place.*)
I awoke this morning in a horrible mood. It didn't help that I didn't sleep well last night. Riley's sugars wouldn't let me.
I wasn't just in a horrible mood, I was angry. Very angry. And tired. Very, very tired. Not just physically tired, but mentally and emotionally tired.
As I fumbled with the shower knobs and held my hand under the water to get just the right temperature, I couldn't wait to get under the hot stream of water. I'm not a morning person. But, usually after I get in the shower and let the water wash over my face, the cobwebs start to loosen and I start to feel better.
Not this morning. This morning, I barely felt the water.
All I felt was anger. Anger at this stupid disease. Anger that so much of my life is wrapped up in it. Anger that I would spend most of the morning debating whether I should change Riley's set a day early or not, just in case the highs last night were caused by a bad set.
As I was soaping up my hair I thought, "What is wrong with me?"
Riley's sugars have been pretty good lately. They have their moments like always. But his average is around 160. I'm quite happy with that. So, it's not the numbers.
I used to think it was. When I'd get frustrated I'd blame it on the crappy numbers, the soaring highs or the sinking lows. But, now, I can't blame it on the numbers.
It's not the numbers, it's the life. It's the life that we are forced to lead because of this stupid disease. My family cannot leave the house without first checking to make sure Riley has enough strips in his case, a few snacks, fruit snacks for lows, extra sets, etc, etc.
We can't just take off for a day at the park without first considering what Riley's sugar is and then debate on whether or not to decrease his pump.
And, if we go to the park for any length of time, Riley's happy play will be interrupted by a finger stick. And, if his sugar is low, well, he gets to consume sugar and sit and watch all the other kids continue to play while he waits for his sugar to come up.
I can't just go out to eat with my husband without worrying about what's going on with Riley. Michael and I have not been to a movie by ourselves since Riley was diagnosed. Why? Because I couldn't enjoy myself because I would have to turn off my cell and I'd worry that something would happen to Riley and my mom wouldn't be able to reach me.
I never, ever, ever feel like I can relax. I can never just be. As much as I don't want it to be, diabetes is always there.
It's in the car with me while I'm driving from one patient's house to the next. It's in the restaurant with me while Michael and I are trying to enjoy some time to ourselves. It's even in the bed with me at night.
As I was putting the conditioner in my hair, I was thinking that if I had diabetes I would be so screwed right now. You know why? Because, I wouldn't test like I should. I wouldn't count carbs. I wouldn't log the sugars I did take. I would try to forget about it for a while, try to take a break.
But, no one can really take a break from it. Even if you don't test, don't count carbs, don't bolus, diabetes is still there. It's still sneering at you. "Go on, ignore me. You'll regret it later."
Then I thought "Snap out of it." You guys with diabetes, you'll be doing this for the rest of your life. You can see no end in sight.
Me? One day Riley will take over all this stuff, the testing, the counting, the bolusing.
But, that's not a comfort to me. I hate the thought of Riley having to deal with this all himself.
Then, I thought of the many times that Scott has told me that it's really not going to be as big a deal for Riley as it is for me. And, I know he's right. Riley will probably be just fine. He'll incorporate diabetes into his life. He'll curse it sometimes, I'm sure, but he'll be OK.
You guys, you feel the highs and the lows. You agonize over having one more piece of cake. You curse the meter when it gives you a reading you don't want to see.
Us, we parents, we want to feel those highs and lows. We want to take them away from our child. We agonize when we watch our child choose that other piece of cake knowing it's probably not going mean good things for his or her sugar.
We worry.
And, maybe that's what my problem really is. Riley will one day take over the tedious day to day management of this disease. But, my worry, it's not going anywhere.
Not just that, but that heartbreak that I have for him will always be there. It kills me to watch him live with this.
When he walks across the floor and his tube is sticking out of the waistband of his pants, my heart breaks a little. When I see him struggle to put his pants on and try not to let his pump fall in the floor, my heart breaks some more. When I have to tell him to stop pretending to be a Jedi and to sit down for a little while because his sugar is low, it breaks some more.
I admire all of you who live with this disease. I know you have your days when diabetes might get you down, but you trudge ahead. I'm not sure I could handle it all like you guys do.
But, just like there is no end in site to the testing and bolusing you guys with diabetes have to endure, there is no end in site to my heartbreak for my child.
Thursday, April 26, 2007
Monday, April 23, 2007
A day in the life...
Riley’s sugars:
10:35 PM: 185 (smile; good bedtime sugar)
12:33 AM: 114 (decrease basal 50% for two hours)
2:45 AM: 71 (give fruit snacks and decrease basal again)
3:04 AM: 56 (curse at the machine, give more fruit snacks)
3:24 AM: 68 (feed him peanut butter crackers while muttering under breath to his pancreas; it isn’t listening)
3:45 AM: 107 (whew, now we’re talking)
3:46 AM: lie in bed wondering what would have happened had I not woken up to find the 71 and woken again for the 56; pray; eventually fall asleep
6:19 AM: 276 (give insulin and go to sleep for 30 more minutes)
1:24 PM: sit at desk typing this; wonder if there will ever be a cure; prop eyelids open; get on with life
10:35 PM: 185 (smile; good bedtime sugar)
12:33 AM: 114 (decrease basal 50% for two hours)
2:45 AM: 71 (give fruit snacks and decrease basal again)
3:04 AM: 56 (curse at the machine, give more fruit snacks)
3:24 AM: 68 (feed him peanut butter crackers while muttering under breath to his pancreas; it isn’t listening)
3:45 AM: 107 (whew, now we’re talking)
3:46 AM: lie in bed wondering what would have happened had I not woken up to find the 71 and woken again for the 56; pray; eventually fall asleep
6:19 AM: 276 (give insulin and go to sleep for 30 more minutes)
1:24 PM: sit at desk typing this; wonder if there will ever be a cure; prop eyelids open; get on with life
Friday, April 20, 2007
Update
Riley is doing better now.
He only had to take Ibuprofen twice yesterday for his temperature. Once at 7 AM and then again at 8:30 last night. So, I think whatever it is, is about to taper out.
His sugar was still running high last night. He was 369. He got a correction. Two hours later he was 427. I haven’t seen a number like that in a very long time.
I started worrying that his site was bad, so I gave him an injection by syringe.
You would have thought I was trying to kill him. He kicked and screamed and cried. Michael had to hold him down so I could give him the injection.
And to think, he used to do that 4-5 times a day and it never seemed to faze him.
But, he's always worse with a site change if he's high. Or, I’m wondering if he’s developing a needle phobia like I’ve heard someone else say.
He came down nicely after that and I kept a wary eye on him throughout the night. He had his lowest sugar of the last few days at 5 o’ clock this morning. It was 131 and I started to finally feel like maybe we’re at the end of this thing.
To answer some of your questions, no I haven’t gotten a whole lot of sleep lately. But, I’m thinking tonight will be better.
I’ll still be getting up a couple of times to test sugars, but I don’t have to check a temp and wake him up to take medicine, and lie there and worry that ketones are invading his little body.
Tonight I just have to worry about him having a bad low.
So, it won't be any different than any other night.
He only had to take Ibuprofen twice yesterday for his temperature. Once at 7 AM and then again at 8:30 last night. So, I think whatever it is, is about to taper out.
His sugar was still running high last night. He was 369. He got a correction. Two hours later he was 427. I haven’t seen a number like that in a very long time.
I started worrying that his site was bad, so I gave him an injection by syringe.
You would have thought I was trying to kill him. He kicked and screamed and cried. Michael had to hold him down so I could give him the injection.
And to think, he used to do that 4-5 times a day and it never seemed to faze him.
But, he's always worse with a site change if he's high. Or, I’m wondering if he’s developing a needle phobia like I’ve heard someone else say.
He came down nicely after that and I kept a wary eye on him throughout the night. He had his lowest sugar of the last few days at 5 o’ clock this morning. It was 131 and I started to finally feel like maybe we’re at the end of this thing.
To answer some of your questions, no I haven’t gotten a whole lot of sleep lately. But, I’m thinking tonight will be better.
I’ll still be getting up a couple of times to test sugars, but I don’t have to check a temp and wake him up to take medicine, and lie there and worry that ketones are invading his little body.
Tonight I just have to worry about him having a bad low.
So, it won't be any different than any other night.
Thursday, April 19, 2007
Sick and Tired
Riley was unusually cranky all day Tuesday. But, he’s four. He’s allowed to have a bad day.
His sugars had run pretty good all day, about like usual. At supper he was a nice 99. We went out to eat at a local Italian restaurant. While I’ve pretty much got a combo bolus figured out for my homemade spaghetti, restaurant spaghetti is somehow a whole different animal. So, I expected he might be a little high later.
At 9 PM, he was 268, higher than I want to see, but like I said I kind of expected it.
At around 11 PM he started complaining of being cold and started to shiver. A check of his temperature revealed a fever of 101.3
Even though I’m sleep deprived already, I got even less sleep Tuesday night. He got Tylenol and Motrin throughout the night, only to wake with a temp of 102.7.
Lovely.
When I tested his ketones, they were large.
Even better.
He had run around 220 all night except at around 5 AM, he dipped down to 171 only to be up to 256 when he woke up.
He had no complaints except a headache.
I went ahead and took him to the doctor. I don’t usually rush my kids to the Dr. for a fever, but Riley is different. The last time he ran a temp and had no symptoms, he had an ear infection that required antibiotics.
I wasn’t taking any chances.
The Dr. couldn’t find anything wrong. They even tested his urine to make sure that he didn’t have a UTI. All they found in his urine was sugar.
He didn’t have ketones anymore. They had cleared out by around 11 AM.
Diagnosis? “It’s a virus.” Hmm, the doctor probably has no idea what the word virus means to me. A virus is what started the whole sugar fiasco in the first place.
The virus can bite me.
His sugars hovered in the 220-230 range yesterday, even though I kept correcting them. He spiked up to 372 once, but came back down to 220 fairly quickly.
He slept a lot and ate very little. Scary. He’s never still, even when he’s sick. So, to see him just lie around is a little unsettling.
This morning he’s about the same. I kept Tylenol and Motrin in him again all night. His sugars stayed in the low to mid 200s and his temp this morning was 101.4.
I’m just praying this all goes away soon. He just feels so bad.
Oh, and diabetes, it can bite me too.
His sugars had run pretty good all day, about like usual. At supper he was a nice 99. We went out to eat at a local Italian restaurant. While I’ve pretty much got a combo bolus figured out for my homemade spaghetti, restaurant spaghetti is somehow a whole different animal. So, I expected he might be a little high later.
At 9 PM, he was 268, higher than I want to see, but like I said I kind of expected it.
At around 11 PM he started complaining of being cold and started to shiver. A check of his temperature revealed a fever of 101.3
Even though I’m sleep deprived already, I got even less sleep Tuesday night. He got Tylenol and Motrin throughout the night, only to wake with a temp of 102.7.
Lovely.
When I tested his ketones, they were large.
Even better.
He had run around 220 all night except at around 5 AM, he dipped down to 171 only to be up to 256 when he woke up.
He had no complaints except a headache.
I went ahead and took him to the doctor. I don’t usually rush my kids to the Dr. for a fever, but Riley is different. The last time he ran a temp and had no symptoms, he had an ear infection that required antibiotics.
I wasn’t taking any chances.
The Dr. couldn’t find anything wrong. They even tested his urine to make sure that he didn’t have a UTI. All they found in his urine was sugar.
He didn’t have ketones anymore. They had cleared out by around 11 AM.
Diagnosis? “It’s a virus.” Hmm, the doctor probably has no idea what the word virus means to me. A virus is what started the whole sugar fiasco in the first place.
The virus can bite me.
His sugars hovered in the 220-230 range yesterday, even though I kept correcting them. He spiked up to 372 once, but came back down to 220 fairly quickly.
He slept a lot and ate very little. Scary. He’s never still, even when he’s sick. So, to see him just lie around is a little unsettling.
This morning he’s about the same. I kept Tylenol and Motrin in him again all night. His sugars stayed in the low to mid 200s and his temp this morning was 101.4.
I’m just praying this all goes away soon. He just feels so bad.
Oh, and diabetes, it can bite me too.
Tuesday, April 17, 2007
How do I know if my child has diabetes?
My usual blog-readers (if I have any) will probably not find this post of very much interest.
This post is for those of you who may have found this blog through a search engine.
The most popular search that I have seen by which people find my blog is: “How do I know if my son/child has diabetes?” or “What if my son/child has diabetes?”
So, I thought that today I’d try to answer those questions.
First, the signs and symptoms of Type I diabetes:
1) Increased thirst: When someone has Type 1 diabetes excess sugar builds up in their blood stream. The high level of sugar in the blood pulls water from the body’s tissue, which makes them thirsty.
2) Increased urination: Because of the increase in thirst, they are drinking more fluids, which in turn, results in more trips to the restroom. This also may lead to bed wetting in children that do not normally wet the bed.
3) Extreme hunger: In Type 1 diabetes, people no longer produce insulin. Insulin is the hormone that causes sugar or glucose to enter cells. Glucose is what gives your cells the energy that it needs to perform the functions for your body. Because someone with Type 1 is not producing enough insulin to “feed” their cells, the food never reaches your tissues.
4) Weight loss: Even though people with Type 1 may be eating more, they will often lose weight. This is because the body’s cells are not receiving glucose. Because of this, cells die and muscle tissue and fat stores shrink, and body weight declines.
5) Blurred vision: A high level of sugar in the blood pulls fluid from all of the body’s tissues, including the lenses of the eyes. This affects a person’s ability to focus.
6) Fatigue: Because a person’s cells are deprived of sugar or glucose, they become tired and irritable.
A couple of other things that I have heard are: Diaper rashes that won’t heal with normal treatment. And, vaginal yeast infections in girls that have not yet reached puberty.
What finally got me to take my son to the doctor was his increased thirst. He would drain full glasses of water and juice only to beg for more. It wasn’t just a casual thirst either. He would beg for juice like his life depended on it.
Along with that, he began to wet the bed. This, I didn’t find too unusual. He was only 3 and even though he was potty trained, he had just recently begun to sleep through the night without a pull-up. I just thought he hadn’t quite gotten the hang of it yet.
When I did take him to the Dr, I found that he had lost 3 pounds. And, I never even noticed. Three pounds is quite a drop for a 3 year old.
And, irritable, yes he was. But, he was 3…
And, he did seem to be more tired than usual.
Thinking about it now puts a knot in my stomach.
If you have any suspicion at all that your child might have Type 1 diabetes, you should call their regular physician. He or she will be better able to advise you of what you need to do.
If Type 1 diabetes goes untreated long enough it can lead to Diabetic Ketoacidosis or DKA. DKA is caused when chemicals called ketones build up in the person’s blood stream. Ketones can cause stomach pain, nausea, vomiting, fruity-smelling breath, breathing problems, or loss of consciousness.
Some tests that may be performed to diagnose your child with Type 1 diabetes are:
---a urine sample may be taken to test for sugar or ketones in the urine
---a blood sample may be taken either by a finger prick or drawn from their arm to check to see how much sugar they have in their blood (usually a sugar higher than 127 when they haven't had anything to eat or drink for at least 4 hours or a random sugar higher than 200 is cause for concern)
---an insulin test can be done to detect the level of insulin in their body
---a C-peptide test can be done; C-peptide is a by-product of insulin production
For Riley, I tested his sugar at home first. I am a home health nurse and I have a machine I use to check my patient’s sugars. When I used this, it registered too high to read. That meant his sugar was over 500. I also used my dad’s machine, which registered too high to read also.
When we arrived at the doctor’s office the first thing they did was have Riley urinate in a cup. They tested his urine for sugar and found a large amount. Then, they did a finger prick to test the amount of sugar in his blood. It was 574. (Normal is usually considered 80-120)
From those two tests, it was determined that he did in fact have Type 1 diabetes. He was immediately admitted to the hospital. There they did test his C-peptide levels. And it was there that our journey with this disease began.
If your child does end up having diabetes, know that you and they are not alone. Every year 13,000 children are diagnosed with Type 1 diabetes. There are over 1 millions American adults and children that are living happy, normal lives with this disease.
The task will seem daunting, but you’ll be OK. I promise. And your kid, they’ll probably do a lot better than you will.
I recommend these resources to get started with understanding this disease and how to best treat it.
Children With Diabetes
Juvenile Diabetes Research Foundation
And, if you just feel the need to talk, email me. My address is in my profile.
This post is for those of you who may have found this blog through a search engine.
The most popular search that I have seen by which people find my blog is: “How do I know if my son/child has diabetes?” or “What if my son/child has diabetes?”
So, I thought that today I’d try to answer those questions.
First, the signs and symptoms of Type I diabetes:
1) Increased thirst: When someone has Type 1 diabetes excess sugar builds up in their blood stream. The high level of sugar in the blood pulls water from the body’s tissue, which makes them thirsty.
2) Increased urination: Because of the increase in thirst, they are drinking more fluids, which in turn, results in more trips to the restroom. This also may lead to bed wetting in children that do not normally wet the bed.
3) Extreme hunger: In Type 1 diabetes, people no longer produce insulin. Insulin is the hormone that causes sugar or glucose to enter cells. Glucose is what gives your cells the energy that it needs to perform the functions for your body. Because someone with Type 1 is not producing enough insulin to “feed” their cells, the food never reaches your tissues.
4) Weight loss: Even though people with Type 1 may be eating more, they will often lose weight. This is because the body’s cells are not receiving glucose. Because of this, cells die and muscle tissue and fat stores shrink, and body weight declines.
5) Blurred vision: A high level of sugar in the blood pulls fluid from all of the body’s tissues, including the lenses of the eyes. This affects a person’s ability to focus.
6) Fatigue: Because a person’s cells are deprived of sugar or glucose, they become tired and irritable.
A couple of other things that I have heard are: Diaper rashes that won’t heal with normal treatment. And, vaginal yeast infections in girls that have not yet reached puberty.
What finally got me to take my son to the doctor was his increased thirst. He would drain full glasses of water and juice only to beg for more. It wasn’t just a casual thirst either. He would beg for juice like his life depended on it.
Along with that, he began to wet the bed. This, I didn’t find too unusual. He was only 3 and even though he was potty trained, he had just recently begun to sleep through the night without a pull-up. I just thought he hadn’t quite gotten the hang of it yet.
When I did take him to the Dr, I found that he had lost 3 pounds. And, I never even noticed. Three pounds is quite a drop for a 3 year old.
And, irritable, yes he was. But, he was 3…
And, he did seem to be more tired than usual.
Thinking about it now puts a knot in my stomach.
If you have any suspicion at all that your child might have Type 1 diabetes, you should call their regular physician. He or she will be better able to advise you of what you need to do.
If Type 1 diabetes goes untreated long enough it can lead to Diabetic Ketoacidosis or DKA. DKA is caused when chemicals called ketones build up in the person’s blood stream. Ketones can cause stomach pain, nausea, vomiting, fruity-smelling breath, breathing problems, or loss of consciousness.
Some tests that may be performed to diagnose your child with Type 1 diabetes are:
---a urine sample may be taken to test for sugar or ketones in the urine
---a blood sample may be taken either by a finger prick or drawn from their arm to check to see how much sugar they have in their blood (usually a sugar higher than 127 when they haven't had anything to eat or drink for at least 4 hours or a random sugar higher than 200 is cause for concern)
---an insulin test can be done to detect the level of insulin in their body
---a C-peptide test can be done; C-peptide is a by-product of insulin production
For Riley, I tested his sugar at home first. I am a home health nurse and I have a machine I use to check my patient’s sugars. When I used this, it registered too high to read. That meant his sugar was over 500. I also used my dad’s machine, which registered too high to read also.
When we arrived at the doctor’s office the first thing they did was have Riley urinate in a cup. They tested his urine for sugar and found a large amount. Then, they did a finger prick to test the amount of sugar in his blood. It was 574. (Normal is usually considered 80-120)
From those two tests, it was determined that he did in fact have Type 1 diabetes. He was immediately admitted to the hospital. There they did test his C-peptide levels. And it was there that our journey with this disease began.
If your child does end up having diabetes, know that you and they are not alone. Every year 13,000 children are diagnosed with Type 1 diabetes. There are over 1 millions American adults and children that are living happy, normal lives with this disease.
The task will seem daunting, but you’ll be OK. I promise. And your kid, they’ll probably do a lot better than you will.
I recommend these resources to get started with understanding this disease and how to best treat it.
Children With Diabetes
Juvenile Diabetes Research Foundation
And, if you just feel the need to talk, email me. My address is in my profile.
Thursday, April 12, 2007
Because I have a four year old
When Katie Couric told me about a “possible new treatment for Type 1 diabetes”, I sat on the edge of my couch wide-eyed with my hand over my mouth. I was in shock. Could this be it? Could this be the cure?
But, now, a few days later, I’m just cautiously optimistic.
I’ve read blog posts covering this. I’ve read some that seemed hopeful and some that seemed very doubtful. At times, I feel like I need to subdue my hope for a cure. Because, I hear many naysayers out there. The ones who say, I’ve had this for too long to hope. Or the ones that say I don’t want to set myself up for disappointment. And, I understand where they are coming from. But, I can’t help but believe that one day there will be a cure.
I’ve read as many articles as I could about this “new treatment” the last few days. It’s risky, very risky. I read one article where the guy said it wasn’t as bad as someone being treated for cancer.
But, I’m a nurse. Some times when you wipe out a person’s immune system, they die. If they get a cold, they die. It takes away all of their defenses.
Even though I’m a little mad with Riley’s immune system, I don’t want to see it wiped out.
On the flip side, I think it’s great what these researchers in Brazil have done. They have taken a huge step in finding the key to unlock the cure for this disease.
My hope now is that because of this research, someone else will find an easier, better way to alter the immune response.
After typing that, I feel a little more apprehension. Because, it’s got to be risky messing with someone’s immune system, right? And, if that’s what it takes to get rid of this disease….
Ugh, I hate myself for getting excited. I hate that I cling to every little bit of research that’s out there, hoping it’s going to be the cure. But, I can’t help it.
Why?
Because, I have a four year old that I love more than life itself.
I have a four year old that I watch lie on the floor with a blank expression when he gets too low. I have a four year old that gets very cranky because he feels like crap when his sugar is high. I have a four year old that endures needle pricks an average of 10-12 times a day and every three days I watch tears well up in his eyes when it’s time for a site change. I have a four year old, that because of this disease, statistics say that his life span will be 20 years shorter than the average person. I have a four year old that statistics also say will have some form of complication from this disease by the time he’s 23.
I have a four year old that when he talks about playing for the NBA, follows it up with, “But I hope I’ll be cured by then.”
And, a lump forms in my throat, and tears sting my eyes. And, I think, there’s got to be a cure one day. There just has to be.
Because, I can’t stand the thought of my child having this disease forever. I just can’t.
And, that is why when smiling Katie told me of these researchers in Brazil, I did a little happy dance.
Because I have a four year old with diabetes.
It’s as simple as that.
But, now, a few days later, I’m just cautiously optimistic.
I’ve read blog posts covering this. I’ve read some that seemed hopeful and some that seemed very doubtful. At times, I feel like I need to subdue my hope for a cure. Because, I hear many naysayers out there. The ones who say, I’ve had this for too long to hope. Or the ones that say I don’t want to set myself up for disappointment. And, I understand where they are coming from. But, I can’t help but believe that one day there will be a cure.
I’ve read as many articles as I could about this “new treatment” the last few days. It’s risky, very risky. I read one article where the guy said it wasn’t as bad as someone being treated for cancer.
But, I’m a nurse. Some times when you wipe out a person’s immune system, they die. If they get a cold, they die. It takes away all of their defenses.
Even though I’m a little mad with Riley’s immune system, I don’t want to see it wiped out.
On the flip side, I think it’s great what these researchers in Brazil have done. They have taken a huge step in finding the key to unlock the cure for this disease.
My hope now is that because of this research, someone else will find an easier, better way to alter the immune response.
After typing that, I feel a little more apprehension. Because, it’s got to be risky messing with someone’s immune system, right? And, if that’s what it takes to get rid of this disease….
Ugh, I hate myself for getting excited. I hate that I cling to every little bit of research that’s out there, hoping it’s going to be the cure. But, I can’t help it.
Why?
Because, I have a four year old that I love more than life itself.
I have a four year old that I watch lie on the floor with a blank expression when he gets too low. I have a four year old that gets very cranky because he feels like crap when his sugar is high. I have a four year old that endures needle pricks an average of 10-12 times a day and every three days I watch tears well up in his eyes when it’s time for a site change. I have a four year old, that because of this disease, statistics say that his life span will be 20 years shorter than the average person. I have a four year old that statistics also say will have some form of complication from this disease by the time he’s 23.
I have a four year old that when he talks about playing for the NBA, follows it up with, “But I hope I’ll be cured by then.”
And, a lump forms in my throat, and tears sting my eyes. And, I think, there’s got to be a cure one day. There just has to be.
Because, I can’t stand the thought of my child having this disease forever. I just can’t.
And, that is why when smiling Katie told me of these researchers in Brazil, I did a little happy dance.
Because I have a four year old with diabetes.
It’s as simple as that.
Tuesday, April 10, 2007
A cure???
"Stem cells taken from the blood of a few diabetes patients have "re-set" their immune systems, helping 14 out of 15 live for months and even years without insulin, researchers reported on Tuesday. "
Do I have your attention? Go here to read the whole article.
Oh my God, I'm so excited I don't know what to do. I'm trying to calm myself. I'm trying to not get ahead of myself.
But, do you know what this means? People with Type 1 diabetes have lived over a year without needing any insulin. People, not mice. Do you hear me?
They are not calling it a cure.
But, I can't help dancing around the living room and grinning like a fool.
Do I have your attention? Go here to read the whole article.
Oh my God, I'm so excited I don't know what to do. I'm trying to calm myself. I'm trying to not get ahead of myself.
But, do you know what this means? People with Type 1 diabetes have lived over a year without needing any insulin. People, not mice. Do you hear me?
They are not calling it a cure.
But, I can't help dancing around the living room and grinning like a fool.
Saturday, April 07, 2007
Bullets and an interview
First, I want to share a few things with you and then I will get to my interview from George.
---Riley's sugars have continued to be good. And, by good, I mean he's had some highs and only a couple of lows, and, neither lasted too long. I got a neat chart from Kevin (yes, his name is Kevin, not Scott) It's an Excel program where I log Riley's sugars and it has this neat little chart and everything, but I can't figure out how to post it. Every time I try blogger tells me it needs to be JPEG or something. If anyone can tell me how to do it, I'd appreciate it.
---The Cubs beat the Brewers 9 to 1 last night. Go cubbies!!! Maybe this year is the year. (But, I say that every year.)
---Sunday Holden was playing basketball and a few minutes into it, I hear "Oh, no, he's turned his ankle." I turned around to see Holden lying on the court holding his leg and groaning in pain. I had to run around a fence to get to him. By the time I got to him there was a little lump forming on the outside of his left ankle. Some people helped me get him to the car which was only a few feet away. And, by the time we got to the car, the lump was now the size of a golf ball.
I took him home to put some ice on it and get a good look at it. By the time we got home (1o minutes away) I had to cut his sock off and the lump was now the size of a grapefruit and growing by the minute. I put some ice up there and wrapped it with an ace wrap and we headed to the ER.
They did x-rays and the ER Dr. came in and said it was just a bad sprain and should be well in a week or two. He gave him a brace and some crutches and sent him on his way.
The next morning I was at a patient’s house and a girl at the office paged me and told me I needed to call the ER. When I did I was told that the radiologist had read Holden's x-ray and thought he had an avulsion fracture of his lateral malleolus. (Or the tip of his fibula, one of the bones that make up the ankle.)(What is an avulsion fracture? An avulsion fracture is an injury to the bone in a place where a tendon or ligament attaches to the bone. When an avulsion fracture occurs, the tendon or ligament pulls off a piece of the bone. )
So, we then went to the orthopedic Dr. He said that even if it was fractured, that the treatment was the same as a bad sprain. So, it's in an air cast and he's still on crutches. His foot and ankle are still about 3 times larger than they should be. And, his ankle and heel have turned a lovely shade of purple. He has to wear the cast for 4 weeks and the Dr. said it will probably continue to swell for about 6-8 weeks.
---Tomorrow is Easter, which is my most favoritists Holiday. It is the foundation for the Christian faith. I serve a risen Savior.
---Tomorrow is also Michael's birthday. Happy birthday!! I love you!!!
Now, on with the interview. If anyone would like for me to interview them, leave me a comment with your email address and I'll get back to you. I will try to come up with questions that are as good as George's.
1. If you had to live in a State entirely by yourself, which one would you choose?
Hmmm, I haven't done much traveling and I've always lived in North Carolina. So, I guess I'd have to choose NC. It has the ocean and the mountains. It really is a beautiful state. But, my goodness, how lonely I'd be.
2. Have you ever given a name to something you own? If so, tell us about it. (Like a car or blowdryer not a stuffed animal)
A blow dryer? Yes, my blow dryer is named Vicki after an old boss of mine who only blew hot air. (Just kidding) No, I can't recall ever naming a piece of equipment.
3. Think back to when you were 10 years old. At that time, what did you want to be when you "grew up?"
This one is easy. I have it written down. I wanted to go to UNC Chapel Hill and after graduation I wanted to get married and have 2 children, a boy and a girl. I wanted to be a stay-at-home mom. I don't know what kind of degree I wanted from UNC. I find it funny that I wanted to go to college, but then wanted to stay home with my kids. I guess it just shows how the importance of education was ingrained in me.
4. If you could have 30 minutes to interview anyone in the world, who would you choose? (They must be living)
OK, easy. It wouldn't be a world leader or a movie star, it would be my favorite NBA player, Adam Morrison.
I would love to interview him and ask how he manages all the day to day tasks of D while spending so many hours in the gym. I have so many questions it would be hard to fit into 30 minutes. Plus, it would probably take me 15 minutes just to find my voice. I can't imagine actually meeting him.
5. Name 5 bloggers that have touched your life and how. (in no particular order and not the top 5, just any 5. We do not want any hurt feelings in the OC) :)
OK, this one took a while to answer. And, they are in no particular order. Also, if you're not listed, it does not mean you haven't impacted my life. It just means that George narrowed it down to 5. All of you have touched my life in some way.
A) Kerri at Six Until Me is who got me started blogging in the first place. I was on the Children With Diabetes chat room and someone up there linked to a post. It was She Still Smiles. From that, I was inspired to start my own blog. So, I would say she's definitely touched my life, by being the reason I started this journey in the first place. Plus, I've been a faithful reader of her blog ever since. To see how well she's done and how successful she is, gives me hope for Riley's future.
B) Vivian at Danieldoo. She is who introduced me to The Diabetes OC. Once again, in the CWD chat room, I mentioned that I had a blog and Vivian was up there and linked me to her blog and also made me aware of the OC. I sent an email that night to have my blog added and the rest is history. I really don't know how I would have handled things if I didn't have this wonderful community to learn from and also to vent my feelings to.
And, Vivian is an inspiration to me. She has a child with D and a husband with MS. And, other children to take care of also. She has her down days like anyone else, but she always bounces back and handles those times with such grace. Also, she's started a website for families living with chronic illnesses , which I think is awesome.
C) Sandra at A Shot in the Dark. She was one of the first people to comment on my blog and so I started reading hers fairly early on in my blogging journey. I identified with her because I think we are both very compulsive, if you will, about caring for our children's D. Sometimes when I read her posts I find myself nodding my head and swallowing the lump in my throat, because I can identify with every emotion she is describing. Her love for both her children is so eloquently displayed in her posts
.D) Scott at Scott's Diabetes Journal. He's just so honest. He doesn't sugar coat anything. He tells it like it is, even if it isn't pretty. I love hearing his honest feelings on being an adult struggling with this disease. It gives me insight into how Riley might feel, but is not able to really articulate it to me.
E) Oh, I'm down to the last one, but I have so many more I want to talk about. OK, maybe in another post.
This is for someone who always makes me laugh, Carey at Up high...Down low. The man is just funny. He has a five year old with D and writes about things that I experience on a daily basis, but he somehow always seems to find the humor in things. I always like to see when a post has been updated, because I know I'm in for a treat.
---Riley's sugars have continued to be good. And, by good, I mean he's had some highs and only a couple of lows, and, neither lasted too long. I got a neat chart from Kevin (yes, his name is Kevin, not Scott) It's an Excel program where I log Riley's sugars and it has this neat little chart and everything, but I can't figure out how to post it. Every time I try blogger tells me it needs to be JPEG or something. If anyone can tell me how to do it, I'd appreciate it.
---The Cubs beat the Brewers 9 to 1 last night. Go cubbies!!! Maybe this year is the year. (But, I say that every year.)
---Sunday Holden was playing basketball and a few minutes into it, I hear "Oh, no, he's turned his ankle." I turned around to see Holden lying on the court holding his leg and groaning in pain. I had to run around a fence to get to him. By the time I got to him there was a little lump forming on the outside of his left ankle. Some people helped me get him to the car which was only a few feet away. And, by the time we got to the car, the lump was now the size of a golf ball.
I took him home to put some ice on it and get a good look at it. By the time we got home (1o minutes away) I had to cut his sock off and the lump was now the size of a grapefruit and growing by the minute. I put some ice up there and wrapped it with an ace wrap and we headed to the ER.
They did x-rays and the ER Dr. came in and said it was just a bad sprain and should be well in a week or two. He gave him a brace and some crutches and sent him on his way.
The next morning I was at a patient’s house and a girl at the office paged me and told me I needed to call the ER. When I did I was told that the radiologist had read Holden's x-ray and thought he had an avulsion fracture of his lateral malleolus. (Or the tip of his fibula, one of the bones that make up the ankle.)(What is an avulsion fracture? An avulsion fracture is an injury to the bone in a place where a tendon or ligament attaches to the bone. When an avulsion fracture occurs, the tendon or ligament pulls off a piece of the bone. )
So, we then went to the orthopedic Dr. He said that even if it was fractured, that the treatment was the same as a bad sprain. So, it's in an air cast and he's still on crutches. His foot and ankle are still about 3 times larger than they should be. And, his ankle and heel have turned a lovely shade of purple. He has to wear the cast for 4 weeks and the Dr. said it will probably continue to swell for about 6-8 weeks.
---Tomorrow is Easter, which is my most favoritists Holiday. It is the foundation for the Christian faith. I serve a risen Savior.
---Tomorrow is also Michael's birthday. Happy birthday!! I love you!!!
Now, on with the interview. If anyone would like for me to interview them, leave me a comment with your email address and I'll get back to you. I will try to come up with questions that are as good as George's.
1. If you had to live in a State entirely by yourself, which one would you choose?
Hmmm, I haven't done much traveling and I've always lived in North Carolina. So, I guess I'd have to choose NC. It has the ocean and the mountains. It really is a beautiful state. But, my goodness, how lonely I'd be.
2. Have you ever given a name to something you own? If so, tell us about it. (Like a car or blowdryer not a stuffed animal)
A blow dryer? Yes, my blow dryer is named Vicki after an old boss of mine who only blew hot air. (Just kidding) No, I can't recall ever naming a piece of equipment.
3. Think back to when you were 10 years old. At that time, what did you want to be when you "grew up?"
This one is easy. I have it written down. I wanted to go to UNC Chapel Hill and after graduation I wanted to get married and have 2 children, a boy and a girl. I wanted to be a stay-at-home mom. I don't know what kind of degree I wanted from UNC. I find it funny that I wanted to go to college, but then wanted to stay home with my kids. I guess it just shows how the importance of education was ingrained in me.
4. If you could have 30 minutes to interview anyone in the world, who would you choose? (They must be living)
OK, easy. It wouldn't be a world leader or a movie star, it would be my favorite NBA player, Adam Morrison.
I would love to interview him and ask how he manages all the day to day tasks of D while spending so many hours in the gym. I have so many questions it would be hard to fit into 30 minutes. Plus, it would probably take me 15 minutes just to find my voice. I can't imagine actually meeting him.
5. Name 5 bloggers that have touched your life and how. (in no particular order and not the top 5, just any 5. We do not want any hurt feelings in the OC) :)
OK, this one took a while to answer. And, they are in no particular order. Also, if you're not listed, it does not mean you haven't impacted my life. It just means that George narrowed it down to 5. All of you have touched my life in some way.
A) Kerri at Six Until Me is who got me started blogging in the first place. I was on the Children With Diabetes chat room and someone up there linked to a post. It was She Still Smiles. From that, I was inspired to start my own blog. So, I would say she's definitely touched my life, by being the reason I started this journey in the first place. Plus, I've been a faithful reader of her blog ever since. To see how well she's done and how successful she is, gives me hope for Riley's future.
B) Vivian at Danieldoo. She is who introduced me to The Diabetes OC. Once again, in the CWD chat room, I mentioned that I had a blog and Vivian was up there and linked me to her blog and also made me aware of the OC. I sent an email that night to have my blog added and the rest is history. I really don't know how I would have handled things if I didn't have this wonderful community to learn from and also to vent my feelings to.
And, Vivian is an inspiration to me. She has a child with D and a husband with MS. And, other children to take care of also. She has her down days like anyone else, but she always bounces back and handles those times with such grace. Also, she's started a website for families living with chronic illnesses , which I think is awesome.
C) Sandra at A Shot in the Dark. She was one of the first people to comment on my blog and so I started reading hers fairly early on in my blogging journey. I identified with her because I think we are both very compulsive, if you will, about caring for our children's D. Sometimes when I read her posts I find myself nodding my head and swallowing the lump in my throat, because I can identify with every emotion she is describing. Her love for both her children is so eloquently displayed in her posts
.D) Scott at Scott's Diabetes Journal. He's just so honest. He doesn't sugar coat anything. He tells it like it is, even if it isn't pretty. I love hearing his honest feelings on being an adult struggling with this disease. It gives me insight into how Riley might feel, but is not able to really articulate it to me.
E) Oh, I'm down to the last one, but I have so many more I want to talk about. OK, maybe in another post.
This is for someone who always makes me laugh, Carey at Up high...Down low. The man is just funny. He has a five year old with D and writes about things that I experience on a daily basis, but he somehow always seems to find the humor in things. I always like to see when a post has been updated, because I know I'm in for a treat.
Tuesday, April 03, 2007
Another endo appointment
We piled in the car Friday and set out for our 3-hour drive to Riley’s endo. On the way there, Michael and I made wagers again to see what we thought Riley’s A1C might be. His guess: 7.4, mine: 7.1. We were both wrong.
We got there and did the whole height and weight thing. Riley’s grown in inches, but not pounds. Then, she did the A1C test.
While we were waiting for the test, we went over the normal things, any recent illnesses, etc. We touched on school for a bit. She asked some things about the school. She assured me that since Holden had been there for 12 years and I used to go there and there are other kids there with D, we shouldn’t have a problem. I hope she’s right.
I wasn’t as antsy this time as last. I hadn’t really made as much effort to lower his A1C as I had at last visit. I was perfectly happy with 7.2. That’s about what I expected this time too.
Boy, was I in for a surprise.
She doesn’t like to look at my log of Riley’s sugars until she sees what his A1C is. She went into the other room where the machine was and came back in with a smile on her face.
“So, what do you think it is?”
“I really don’t want to guess, just in case I’m wrong”, I said.
“How does 6.6 sound?”
I nearly fell off my chair. I looked at Michael and said, “Did you hear that?” He was just sitting there with his mouth open. He couldn’t believe it either.
“Now, don’t get too excited”, she said. “I haven’t made up my mind if it’s good or not yet.”
Then, she poured over Riley’s sugar records. She always looks and makes adjustments if needed. But, this time, she took a good while just looking at them.
“I can’t find anything wrong”, she said. “I was really looking to see where you might be letting him run too low, but I just don’t see it.”
I told her he had an occasional low, and about 2 weeks before he had 3 or 4 days of lows, but I pulled back on his basals and things evened out. I then noted that his last low had been a 56 exactly one week prior.
“But, 6.6 isn’t too low is it?” Now, I started to wonder if I was damaging my child by letting his sugars be too low.
“Well, 6.6 is very low for a child his age. But, I really think he’s doing fine.”
“I’ve looked at his sugars and I think what’s helping is that when he’s high, you go on and give him insulin and get it to come on down. He doesn’t run high for very long. And, the fact that you test about a billion times a day, helps too.” She said the last part with a grin on her face.
So, we went out and celebrated Friday night. I broke my diet and ate a very delicious steak. Michael and Holden went to see 300 and Riley and I went to see Meet the Robinsons. If you haven’t seen it, you should. It’s a great movie.
I had a couple of days after the appointment where I kept second-guessing myself. Was I letting him run too low? But, then, I snapped out of it.
Like Dr. M said, we test often. Plus, Riley is very good at reporting low sugars. Even if he does go low, he doesn’t stay that way very long. And, well, darn it, I’m just glad that the sugars are like that now, because when he gets older and hits the teen years, who know what it will be?
But, right now it’s 6.6 and I couldn’t be happier.
We got there and did the whole height and weight thing. Riley’s grown in inches, but not pounds. Then, she did the A1C test.
While we were waiting for the test, we went over the normal things, any recent illnesses, etc. We touched on school for a bit. She asked some things about the school. She assured me that since Holden had been there for 12 years and I used to go there and there are other kids there with D, we shouldn’t have a problem. I hope she’s right.
I wasn’t as antsy this time as last. I hadn’t really made as much effort to lower his A1C as I had at last visit. I was perfectly happy with 7.2. That’s about what I expected this time too.
Boy, was I in for a surprise.
She doesn’t like to look at my log of Riley’s sugars until she sees what his A1C is. She went into the other room where the machine was and came back in with a smile on her face.
“So, what do you think it is?”
“I really don’t want to guess, just in case I’m wrong”, I said.
“How does 6.6 sound?”
I nearly fell off my chair. I looked at Michael and said, “Did you hear that?” He was just sitting there with his mouth open. He couldn’t believe it either.
“Now, don’t get too excited”, she said. “I haven’t made up my mind if it’s good or not yet.”
Then, she poured over Riley’s sugar records. She always looks and makes adjustments if needed. But, this time, she took a good while just looking at them.
“I can’t find anything wrong”, she said. “I was really looking to see where you might be letting him run too low, but I just don’t see it.”
I told her he had an occasional low, and about 2 weeks before he had 3 or 4 days of lows, but I pulled back on his basals and things evened out. I then noted that his last low had been a 56 exactly one week prior.
“But, 6.6 isn’t too low is it?” Now, I started to wonder if I was damaging my child by letting his sugars be too low.
“Well, 6.6 is very low for a child his age. But, I really think he’s doing fine.”
“I’ve looked at his sugars and I think what’s helping is that when he’s high, you go on and give him insulin and get it to come on down. He doesn’t run high for very long. And, the fact that you test about a billion times a day, helps too.” She said the last part with a grin on her face.
So, we went out and celebrated Friday night. I broke my diet and ate a very delicious steak. Michael and Holden went to see 300 and Riley and I went to see Meet the Robinsons. If you haven’t seen it, you should. It’s a great movie.
I had a couple of days after the appointment where I kept second-guessing myself. Was I letting him run too low? But, then, I snapped out of it.
Like Dr. M said, we test often. Plus, Riley is very good at reporting low sugars. Even if he does go low, he doesn’t stay that way very long. And, well, darn it, I’m just glad that the sugars are like that now, because when he gets older and hits the teen years, who know what it will be?
But, right now it’s 6.6 and I couldn’t be happier.
Tuesday, March 27, 2007
Some More Adam
Guess who received the Eugene T. Davidson Award for Public Service (presented by the American Association of Clinical Endocrinologists)?
That's right, my favorite NBA player, Adam Morrison.
You can go here to read the article. (I heard about it at Amy's blog.)
Sorry, but you know I couldn't let this go by without saying, "Yeah Adam!!!"
That's right, my favorite NBA player, Adam Morrison.
You can go here to read the article. (I heard about it at Amy's blog.)
Sorry, but you know I couldn't let this go by without saying, "Yeah Adam!!!"
Friday, March 23, 2007
Lessons from a four year old
As I was getting ready this morning, Riley was propped up on the couch.
“Mom, it’s almost Easter right?"
“Yes.”
“And that’s Daddy’s birthday too, right?”
“Uh, huh.”
“And, then after Daddy’s birthday, it’s my birthday?”
“Sure is.”
“And, I’ll be five and then I’ll start school.”
“Yeah. Are you excited about going to school?”
“I guess.”
I kept getting ready. I was checking his strips to see if I needed to pack any extra in his bag when he asked, “Mama, who is going to take care of my sugars and my pump when I’m in school?”
I stopped what I was doing and swallowed, hard. I was trying to get rid of the big lump that had suddenly formed in my throat.
“Well, sweetie, you can check you sugar yourself and your teacher is going to learn how to do your pump and count your carbs.”
“And, Holden will be there too, right? And, he can count my carbs and give my insulin.”
“Yes.”
“And, A and S will be there too.” (other kids with D)
“Yes, and also W. She has diabetes too and wears a pump just like yours. And I’ve already talked to her mom and she says W will be able to help out too if you need her. So, you see, you’re going to be OK. You’ll have lots of people looking out for you.”
“OK”, he said. And, with that, he jumped off the couch, grabbed his Star Wars movie and headed out the door.
And, I thought, Why can’t I be like that, just say OK and go on with my life?
I have a lot of time to think when I’m driving from one patient’s house to the next. So, I’ve been thinking about this conversation a lot today.
And, I keep coming back to a little plaque that is on my desk at work. A patient gave it to me. It says: GOD IS GREATER THAN ANY PROBLEM I HAVE.
And, I think that the reason Riley went on and didn’t worry anymore is because he knew his mommy would handle it. Why worry? If mom says it’s going to be OK, then it will.
It’s a beautiful day here today. As I was driving down the road with my sunroof open and “Pour Some Sugar on Me” blasting on the radio (cut me some slack, I grew up in the 80s, OK?), I had tears in my eyes. And, this time, they were happy tears.
It took my four year old to remind me that no matter what, I’m never alone. No matter what, there’s always someone who has my back. And, He promised me He’d never give me anything that He and I couldn’t handle together.
So, for today, I’m not worried. My faith waivers from time to time. Sometimes I forget that I’m never alone and neither is Riley. But, for today, I know everything is going to be OK. Because, we’ll get through it together.
“Mom, it’s almost Easter right?"
“Yes.”
“And that’s Daddy’s birthday too, right?”
“Uh, huh.”
“And, then after Daddy’s birthday, it’s my birthday?”
“Sure is.”
“And, I’ll be five and then I’ll start school.”
“Yeah. Are you excited about going to school?”
“I guess.”
I kept getting ready. I was checking his strips to see if I needed to pack any extra in his bag when he asked, “Mama, who is going to take care of my sugars and my pump when I’m in school?”
I stopped what I was doing and swallowed, hard. I was trying to get rid of the big lump that had suddenly formed in my throat.
“Well, sweetie, you can check you sugar yourself and your teacher is going to learn how to do your pump and count your carbs.”
“And, Holden will be there too, right? And, he can count my carbs and give my insulin.”
“Yes.”
“And, A and S will be there too.” (other kids with D)
“Yes, and also W. She has diabetes too and wears a pump just like yours. And I’ve already talked to her mom and she says W will be able to help out too if you need her. So, you see, you’re going to be OK. You’ll have lots of people looking out for you.”
“OK”, he said. And, with that, he jumped off the couch, grabbed his Star Wars movie and headed out the door.
And, I thought, Why can’t I be like that, just say OK and go on with my life?
I have a lot of time to think when I’m driving from one patient’s house to the next. So, I’ve been thinking about this conversation a lot today.
And, I keep coming back to a little plaque that is on my desk at work. A patient gave it to me. It says: GOD IS GREATER THAN ANY PROBLEM I HAVE.
And, I think that the reason Riley went on and didn’t worry anymore is because he knew his mommy would handle it. Why worry? If mom says it’s going to be OK, then it will.
It’s a beautiful day here today. As I was driving down the road with my sunroof open and “Pour Some Sugar on Me” blasting on the radio (cut me some slack, I grew up in the 80s, OK?), I had tears in my eyes. And, this time, they were happy tears.
It took my four year old to remind me that no matter what, I’m never alone. No matter what, there’s always someone who has my back. And, He promised me He’d never give me anything that He and I couldn’t handle together.
So, for today, I’m not worried. My faith waivers from time to time. Sometimes I forget that I’m never alone and neither is Riley. But, for today, I know everything is going to be OK. Because, we’ll get through it together.
Wednesday, March 21, 2007
A little help
One day last week I was sitting in a local restaurant waiting for my food. I was going to take it back to the office to eat it.
As I was sitting there, my phone rang. It was my mom.
“Hey, where are you?”
I told her.
“Well, Riley’s needle is out. His sugar was 254 when I checked it, so I don’t know how long it might have been out.”
“OK, I’ll be right there.”
I got my food and went to my mom’s (about 10 minutes away) and changed Riley’s needle.
After I was done I told my mom I thought she might need to start changing his needle some during the week. Then, I held my breath. I didn’t know what she was going to say.
All she said was, “OK”.
I explained that I wanted to know that if something happened to me, that Riley would be OK; that someone would be able to do the things he needed done. I didn’t tell her how overloaded I had felt lately, because, well, she’s my mom and I don’t want to dump that on her.
His next site change was Sunday before church. I did that one.
So, today was another site-change day. I wasn’t sure if my mom would remember. I walked in the house and lay the supplies on the table.
I said, “His needle is supposed to be changed today.”
Again, I get, “OK”.
She picked up the supplies and got to work. She got me to check behind her for bubbles in the cartridge. There wasn’t any.
Then, she told me not to prompt her, to let her do what she could on her own. I had to help her a little, but for the most part she did it on her own.
When it came time to fill the cannula, I asked her if she remembered how much to use. “0.3”, she said.
“Wow, I can’t believe you remembered.”
“I didn’t. I looked over my notes this morning before you got here.”
A long time ago, not long after Riley started the pump, I wrote down step-by-step instructions on how to change his needle. My mom had kept them and read over them. She hadn’t forgotten that today was the day she would have to try changing his needle.
And now, my burden feels a little less, the load a little lighter. All because I know that my mom can fill in for me and that she will whenever I need her to.
I love Holden and Riley so much that my heart almost bursts at the thought of them. I would do anything in the world for them. I would lay down my life for them. I wouldn’t even think twice about it.
I forget sometimes that as much as I love Holden and Riley and as much as my heart breaks for them sometimes, my mom feels the same way about me. And, that is an awesome, awesome thing to realize.
And, as much as she loves me, she loves Riley too. And, she would be just as ferocious of a protector for him as me if it came down to it.
And today, when Riley started to cry because his insulin "burned", and she scooped him up and covered him with kisses and told him she was sorry, I was reminded of that.
As I was sitting there, my phone rang. It was my mom.
“Hey, where are you?”
I told her.
“Well, Riley’s needle is out. His sugar was 254 when I checked it, so I don’t know how long it might have been out.”
“OK, I’ll be right there.”
I got my food and went to my mom’s (about 10 minutes away) and changed Riley’s needle.
After I was done I told my mom I thought she might need to start changing his needle some during the week. Then, I held my breath. I didn’t know what she was going to say.
All she said was, “OK”.
I explained that I wanted to know that if something happened to me, that Riley would be OK; that someone would be able to do the things he needed done. I didn’t tell her how overloaded I had felt lately, because, well, she’s my mom and I don’t want to dump that on her.
His next site change was Sunday before church. I did that one.
So, today was another site-change day. I wasn’t sure if my mom would remember. I walked in the house and lay the supplies on the table.
I said, “His needle is supposed to be changed today.”
Again, I get, “OK”.
She picked up the supplies and got to work. She got me to check behind her for bubbles in the cartridge. There wasn’t any.
Then, she told me not to prompt her, to let her do what she could on her own. I had to help her a little, but for the most part she did it on her own.
When it came time to fill the cannula, I asked her if she remembered how much to use. “0.3”, she said.
“Wow, I can’t believe you remembered.”
“I didn’t. I looked over my notes this morning before you got here.”
A long time ago, not long after Riley started the pump, I wrote down step-by-step instructions on how to change his needle. My mom had kept them and read over them. She hadn’t forgotten that today was the day she would have to try changing his needle.
And now, my burden feels a little less, the load a little lighter. All because I know that my mom can fill in for me and that she will whenever I need her to.
I love Holden and Riley so much that my heart almost bursts at the thought of them. I would do anything in the world for them. I would lay down my life for them. I wouldn’t even think twice about it.
I forget sometimes that as much as I love Holden and Riley and as much as my heart breaks for them sometimes, my mom feels the same way about me. And, that is an awesome, awesome thing to realize.
And, as much as she loves me, she loves Riley too. And, she would be just as ferocious of a protector for him as me if it came down to it.
And today, when Riley started to cry because his insulin "burned", and she scooped him up and covered him with kisses and told him she was sorry, I was reminded of that.
Saturday, March 17, 2007
Yes, someone with diabetes does live here
So, I was doing a little cleaning today. I pulled out the couch cushions to vacuum and this is what I found.
Beautiful, isn't it?
Under the couch cushions I found: An assortment of test strips, both One Touch Ultra and Freestyle. Also, some gum, sugar free, of course. And, the pen in the background, it probably fell down there one night when I was logging sugars.
Also, the directions for the One Touch Ultra strips and the plunger for his insulin cartridge.
And, the needle off one of the insulin cartridges and an empty pack of fruit gushers, our treatment of choice for lows.
I saw it and I just had to laugh. And, I just had to share it with you.
Thursday, March 15, 2007
One More Try
I'm going to give one more push to donate to my charity badge located on the side of my blog. The badge will not be any good after March 31st. I know many of you give to your own charity. But, this is for those of you who don't or maybe who do, but would like to help this one too.
The Iacocca Foundation gives all of its money to research to find a cure. Their money does not go to any other avenue. That's one of the main reasons I choose to support The Iacocca Foundation. I want a cure. While better medicines and new technology is great, I look forward to a day when Riley doesn't need any of it. And, I want to do everything in my power to make that day come to fruition.
Now, some statistics: ( I know I may be "preaching to the choir" here, but maybe someone is reading that doesn't know that much about D. All these statistics were collected from various resources throughout the web.)
Type 1 diabetes is the most common chronic disease of childhood. It is more common than cancer, cystic fibrosis, MS, rheumatoid arthritis, and muscular dystrophy.
1 in every 600 children will develop Type 1 diabetes.
As many as 3 million Americans may have Type 1 diabetes. 171 million people have diabetes world-wide.
In the US 13,000 children are diagnosed with Type 1 diabetes each year. That's 35 children every single day.
Diabetes reduces life expectancy on average by up to 15 years.
(That last one is the one that really hits me in the gut.)
Also, that cute little boy you see on the badge. That's my baby. I love him more than I do life itself. But, this isn't just about him. It's not just about your child. It's not just about you. It's about everybody WORLD-WIDE that deals with this disease on a daily basis.
I am going to leave you with a video. I've seen it on some other blogs. If you haven't seen it, take some time and watch it.
Here are some more faces of diabetes:
The Iacocca Foundation gives all of its money to research to find a cure. Their money does not go to any other avenue. That's one of the main reasons I choose to support The Iacocca Foundation. I want a cure. While better medicines and new technology is great, I look forward to a day when Riley doesn't need any of it. And, I want to do everything in my power to make that day come to fruition.
Now, some statistics: ( I know I may be "preaching to the choir" here, but maybe someone is reading that doesn't know that much about D. All these statistics were collected from various resources throughout the web.)
Type 1 diabetes is the most common chronic disease of childhood. It is more common than cancer, cystic fibrosis, MS, rheumatoid arthritis, and muscular dystrophy.
1 in every 600 children will develop Type 1 diabetes.
As many as 3 million Americans may have Type 1 diabetes. 171 million people have diabetes world-wide.
In the US 13,000 children are diagnosed with Type 1 diabetes each year. That's 35 children every single day.
Diabetes reduces life expectancy on average by up to 15 years.
(That last one is the one that really hits me in the gut.)
Also, that cute little boy you see on the badge. That's my baby. I love him more than I do life itself. But, this isn't just about him. It's not just about your child. It's not just about you. It's about everybody WORLD-WIDE that deals with this disease on a daily basis.
I am going to leave you with a video. I've seen it on some other blogs. If you haven't seen it, take some time and watch it.
Here are some more faces of diabetes:
Tuesday, March 13, 2007
A Fear of Purple Elephants
At Riley’s endo appointment in September the subject of school came up.
As Dr. M was talking she could see me squirming in my seat. “I don’t want to think about him starting school right now.”
She smiled. “Does Riley ever stay with someone who is not a relative?”
“Um, no. The only people who know how to care for his diabetes are my husband and I and my mom. I’m not leaving him with anyone else.”
She smiled some more. “Well, maybe you should think about leaving him with someone just to go to the grocery store or something. Just a quick little trip.”
This was during the time that Riley was playing soccer. “Or, you can leave him at soccer practice and run to the grocery store.”
Was she crazy? Leave him alone at soccer practice? What if he went low? What if he needed me? What if…
Then she went on to say that I needed to let go a little at the time. It would make it easier on me when it was time to send him off to school, which makes perfect sense.
“This woman knows what she’s talking about.”, I thought. “I really need to listen to her and do what she says.”
Michael and I talked about it on the way home. I admitted I needed to give up some of the control. We talked about situations I would be comfortable with.
Then, I proceeded to do exactly what I’ve been doing all along. And, that was six months ago.
Why is it so hard for me to let someone else have the reigns for a while?
Riley has been staying with my mom when I’m working. He’s been doing this for 17 months. I have just gotten to the point in the last couple of months where I stopped calling my mom several times a day to check on Riley’s sugars. I have even gotten to the point where I don’t automatically look at his sugars as soon as I walk in the door.
This is a big step for me. The next big step is coming up in 5 months. And, I don’t know what I’m going to do about it.
I know I need to ease into it like Dr. M said. But, I just have so many fears. I’m terrified of the what-ifs.
What if…he goes low and has a seizure? No, he’s never had a seizure before, but what if he does and I’m not there?
What if…he goes low and no one notices until he passes out?
What if… he goes high and starts to spill ketones?
What if…his set comes out and I’m not right there to change it?
What if…they don’t count his carbs right?
What if… a purple elephant lands on the moon and sprinkles sugar in the air?
Yes, I do know how silly I sound.
I have never been a person to live by the what-ifs in life. Ever. So, what has changed? What has this stupid disease done to me?
A lot of it has to do with control. I am not a control freak. Really, I’m not. You only need to look at my house and see the chaos to know that being in control of everything is not an issue for me.
With diabetes no one is ever really in control. You can do everything just right (eat, count carbs, bolus) and still come out with crappy numbers. I think me handling every aspect of Riley’s D helps me to somehow feel more in control of things.
Silly, really, trying to feel in control of something you know you can’t control anyway.
But, the big issue, and this in the one I struggle with the most, is fear. Fear that something bad will happen to Riley. Fear that if I had been there, whatever it was would not have happened.
Holden got his driver’s license (and a car) a little over a month ago. A few weeks before, I started panicking. I didn’t know how I was going to handle it. I just knew I would worry that something bad was going to happen every time he was out on the road.
But, you know what? That’s not the case at all. The day he got his license, I stood there with my video camera and watched him drive away for the first time. I waited for the panic to rise in my chest, but it never came. I said a little prayer and went on with my day.
Do I worry that he might get in a wreck? Yes. But, I don’t dwell on it. I just tell myself that if it happens I will deal with it then. There is no reason to waste my time worrying about things that hopefully will never happen. And, even if it does happen, all the worrying in the world won’t change it.
Why oh why can’t I get to that point about Riley’s diabetes?
I’m hoping that when he starts school and I don’t have a choice but to let him go, I’ll do OK. But, right now, I have a choice, and that choice is to keep him as close to me as possible.
As Dr. M was talking she could see me squirming in my seat. “I don’t want to think about him starting school right now.”
She smiled. “Does Riley ever stay with someone who is not a relative?”
“Um, no. The only people who know how to care for his diabetes are my husband and I and my mom. I’m not leaving him with anyone else.”
She smiled some more. “Well, maybe you should think about leaving him with someone just to go to the grocery store or something. Just a quick little trip.”
This was during the time that Riley was playing soccer. “Or, you can leave him at soccer practice and run to the grocery store.”
Was she crazy? Leave him alone at soccer practice? What if he went low? What if he needed me? What if…
Then she went on to say that I needed to let go a little at the time. It would make it easier on me when it was time to send him off to school, which makes perfect sense.
“This woman knows what she’s talking about.”, I thought. “I really need to listen to her and do what she says.”
Michael and I talked about it on the way home. I admitted I needed to give up some of the control. We talked about situations I would be comfortable with.
Then, I proceeded to do exactly what I’ve been doing all along. And, that was six months ago.
Why is it so hard for me to let someone else have the reigns for a while?
Riley has been staying with my mom when I’m working. He’s been doing this for 17 months. I have just gotten to the point in the last couple of months where I stopped calling my mom several times a day to check on Riley’s sugars. I have even gotten to the point where I don’t automatically look at his sugars as soon as I walk in the door.
This is a big step for me. The next big step is coming up in 5 months. And, I don’t know what I’m going to do about it.
I know I need to ease into it like Dr. M said. But, I just have so many fears. I’m terrified of the what-ifs.
What if…he goes low and has a seizure? No, he’s never had a seizure before, but what if he does and I’m not there?
What if…he goes low and no one notices until he passes out?
What if… he goes high and starts to spill ketones?
What if…his set comes out and I’m not right there to change it?
What if…they don’t count his carbs right?
What if… a purple elephant lands on the moon and sprinkles sugar in the air?
Yes, I do know how silly I sound.
I have never been a person to live by the what-ifs in life. Ever. So, what has changed? What has this stupid disease done to me?
A lot of it has to do with control. I am not a control freak. Really, I’m not. You only need to look at my house and see the chaos to know that being in control of everything is not an issue for me.
With diabetes no one is ever really in control. You can do everything just right (eat, count carbs, bolus) and still come out with crappy numbers. I think me handling every aspect of Riley’s D helps me to somehow feel more in control of things.
Silly, really, trying to feel in control of something you know you can’t control anyway.
But, the big issue, and this in the one I struggle with the most, is fear. Fear that something bad will happen to Riley. Fear that if I had been there, whatever it was would not have happened.
Holden got his driver’s license (and a car) a little over a month ago. A few weeks before, I started panicking. I didn’t know how I was going to handle it. I just knew I would worry that something bad was going to happen every time he was out on the road.
But, you know what? That’s not the case at all. The day he got his license, I stood there with my video camera and watched him drive away for the first time. I waited for the panic to rise in my chest, but it never came. I said a little prayer and went on with my day.
Do I worry that he might get in a wreck? Yes. But, I don’t dwell on it. I just tell myself that if it happens I will deal with it then. There is no reason to waste my time worrying about things that hopefully will never happen. And, even if it does happen, all the worrying in the world won’t change it.
Why oh why can’t I get to that point about Riley’s diabetes?
I’m hoping that when he starts school and I don’t have a choice but to let him go, I’ll do OK. But, right now, I have a choice, and that choice is to keep him as close to me as possible.
Monday, March 12, 2007
Damn Diabetes
My anniversary was yesterday. ( I love you, Michael.) To celebrate, we went out to eat on Friday night and then rented a couple of movies to watch at home (since there was nothing playing at the theater worth spending our money on).
Riley and Holden stayed at my mom’s. Riley has spent the night there a few times since he was diagnosed. His sugars have been running pretty good throughout the night, so I felt good about him staying. My mom gets up and checks his sugar throughout the night like I do. But, I just feel better when his sugars cooperate and she doesn’t have to do anything with them.
I changed his set on Friday morning. Everything seemed to be going OK. I got off of work a little early to go home and change. On the way home, I got a call from my mom. Riley was getting ready to eat a snack and she had checked his sugar and it was 362. She was hoping to catch me before I went to eat (an hour away). I could hear the panic in her voice. She was trying to play it cool, but I knew she was worried that it was a set problem and I was not going to be close by to change it.
I went home and changed and called as we were leaving (45 minutes later). His sugar was now 243. OK, it was coming down some. I called again at suppertime and he was 200. Not great, but not in the 300s either.
I finally felt better and put diabetes out of my mind for the night. I knew my mom could handle it. She keeps him every day of the week.
We got home and popped one of the movies, Saw III, into the DVD player. Yes, I know, we’re just hopeless romantics aren’t we? I love horror movies. But, let me tell you, this one was pretty intense. There were several scenes where I couldn’t bare to watch and I had to turn my head away from the TV or bury my face in Michael’s chest.
The movie ended around midnight. We decided not to watch the other movie (The Departed: We watched it later. It was not nearly as good as I thought it would be and it had way, way, way too much cursing in it for me. If Leo and Nicholson hadn’t been in it, I don’t know if I would have even finished watching it.)
We were in the processes of getting ready to go to bed when the phone rang. As soon as it started ringing I knew that something was wrong.
It was Holden. He was calling to tell me that Riley’s sugar was 322. My mom wanted to know if she should give the full dose of insulin the pump recommended or cut it back a little since it was midnight.
I told Holden how much insulin to give and to recheck in an hour and a half and call me back. I hung up.
I sat on the couch with my head hung down. And, then, I started to cry.
Michael walked over and asked me why I was crying. “You wouldn’t be crying if his sugar was like that and he was here.”
“But, he’s not here. He’s there. He’s there and I’m not.”
My crying turned into sobs.
It was a mixture of a lot of things, I guess. First, guilt, because I wasn’t there with him (even though he was asleep). He’s my responsibility.
Secondly, some of it was a little selfish. I mean, I can’t even get away from it all even when he’s not with me. This was supposed to be our anniversary celebration and I was sitting on the couch blubbering like and idiot, all because of diabetes, once again.
Also, I just signed him up for school next year. This is not settling well with me. He will be attending a private school. They do not have a school nurse. His teacher will be the one caring for him. Also, the school is Pre-k through 12th grade, so Holden will be there to look after him too.
But, it’s still hard for me to think about him being there all day without either my mom or me. He has not stayed with anyone other than Michael, my mom, or me since he was diagnosed. Well, he did stay home with Holden for about an hour and a half the other night. Michael and I were at a meeting about 2 minutes away and I had my cell phone the whole time.
I kept crying and crying and crying. (I’m wondering if any of it was due to carry over from the movie also, not Saw, but Steel Magnolias)
Michael, bless him, didn’t know what to do. He held me, but there wasn’t really anything he could say to make it better.
He would say, “Maybe his basals need adjusting. Or, maybe it’s his needle.”
To which I would reply: “It doesn’t really matter, does it? I can fix his needle, I can adjust his basals, but I can’t fix him. No matter how hard I try, no matter what I do, he still has diabetes. I can’t fix that. And it kills me. It just kills me.”
So, I cried for about 30 minutes and then we went and lay in the bed. But, I couldn’t sleep. I knew my mom was supposed to call in another hour to report his sugar. Until then, I couldn’t sleep.
Michael and I lay there and talked about Riley and his future and my fears of him going to school, no more crying, just talking this time.
Then, at 1:20 the phone rang. His sugar was down to 264. Well, at least it was coming down.
I finally let myself drift off to sleep.
Riley ran high all night and awoke with a sugar of 256. Mom didn’t call until around 10:30 when he wanted snack and he was 299. (Why didn’t I call earlier? Because I was still in bed asleep. 17 months of getting up every 2-3 hours has taken its toll.)
Michael and I got up and I went and changed Riley’s needle. I didn’t know what else to do.
I didn’t correct the 299 because of the drop he usually gets with a set change. Sure enough, an hour and a half later, he was 70. I gave him a few fruit snacks and checked again in 20 minutes. He was now 49. Yep, it must have been the set causing the highs.
If he had been with me, I would have changed the needle earlier. He wouldn’t have ran high as long.
Guilt, pain, grief, anger all rolled into one. That’s part of being a parent of a child with diabetes.
My head knows Riley’s going to be OK. I know Riley can be and do anything he wants. But, my heart just want get on board with my brain.
And, I don’t know how to make it.
Riley and Holden stayed at my mom’s. Riley has spent the night there a few times since he was diagnosed. His sugars have been running pretty good throughout the night, so I felt good about him staying. My mom gets up and checks his sugar throughout the night like I do. But, I just feel better when his sugars cooperate and she doesn’t have to do anything with them.
I changed his set on Friday morning. Everything seemed to be going OK. I got off of work a little early to go home and change. On the way home, I got a call from my mom. Riley was getting ready to eat a snack and she had checked his sugar and it was 362. She was hoping to catch me before I went to eat (an hour away). I could hear the panic in her voice. She was trying to play it cool, but I knew she was worried that it was a set problem and I was not going to be close by to change it.
I went home and changed and called as we were leaving (45 minutes later). His sugar was now 243. OK, it was coming down some. I called again at suppertime and he was 200. Not great, but not in the 300s either.
I finally felt better and put diabetes out of my mind for the night. I knew my mom could handle it. She keeps him every day of the week.
We got home and popped one of the movies, Saw III, into the DVD player. Yes, I know, we’re just hopeless romantics aren’t we? I love horror movies. But, let me tell you, this one was pretty intense. There were several scenes where I couldn’t bare to watch and I had to turn my head away from the TV or bury my face in Michael’s chest.
The movie ended around midnight. We decided not to watch the other movie (The Departed: We watched it later. It was not nearly as good as I thought it would be and it had way, way, way too much cursing in it for me. If Leo and Nicholson hadn’t been in it, I don’t know if I would have even finished watching it.)
We were in the processes of getting ready to go to bed when the phone rang. As soon as it started ringing I knew that something was wrong.
It was Holden. He was calling to tell me that Riley’s sugar was 322. My mom wanted to know if she should give the full dose of insulin the pump recommended or cut it back a little since it was midnight.
I told Holden how much insulin to give and to recheck in an hour and a half and call me back. I hung up.
I sat on the couch with my head hung down. And, then, I started to cry.
Michael walked over and asked me why I was crying. “You wouldn’t be crying if his sugar was like that and he was here.”
“But, he’s not here. He’s there. He’s there and I’m not.”
My crying turned into sobs.
It was a mixture of a lot of things, I guess. First, guilt, because I wasn’t there with him (even though he was asleep). He’s my responsibility.
Secondly, some of it was a little selfish. I mean, I can’t even get away from it all even when he’s not with me. This was supposed to be our anniversary celebration and I was sitting on the couch blubbering like and idiot, all because of diabetes, once again.
Also, I just signed him up for school next year. This is not settling well with me. He will be attending a private school. They do not have a school nurse. His teacher will be the one caring for him. Also, the school is Pre-k through 12th grade, so Holden will be there to look after him too.
But, it’s still hard for me to think about him being there all day without either my mom or me. He has not stayed with anyone other than Michael, my mom, or me since he was diagnosed. Well, he did stay home with Holden for about an hour and a half the other night. Michael and I were at a meeting about 2 minutes away and I had my cell phone the whole time.
I kept crying and crying and crying. (I’m wondering if any of it was due to carry over from the movie also, not Saw, but Steel Magnolias)
Michael, bless him, didn’t know what to do. He held me, but there wasn’t really anything he could say to make it better.
He would say, “Maybe his basals need adjusting. Or, maybe it’s his needle.”
To which I would reply: “It doesn’t really matter, does it? I can fix his needle, I can adjust his basals, but I can’t fix him. No matter how hard I try, no matter what I do, he still has diabetes. I can’t fix that. And it kills me. It just kills me.”
So, I cried for about 30 minutes and then we went and lay in the bed. But, I couldn’t sleep. I knew my mom was supposed to call in another hour to report his sugar. Until then, I couldn’t sleep.
Michael and I lay there and talked about Riley and his future and my fears of him going to school, no more crying, just talking this time.
Then, at 1:20 the phone rang. His sugar was down to 264. Well, at least it was coming down.
I finally let myself drift off to sleep.
Riley ran high all night and awoke with a sugar of 256. Mom didn’t call until around 10:30 when he wanted snack and he was 299. (Why didn’t I call earlier? Because I was still in bed asleep. 17 months of getting up every 2-3 hours has taken its toll.)
Michael and I got up and I went and changed Riley’s needle. I didn’t know what else to do.
I didn’t correct the 299 because of the drop he usually gets with a set change. Sure enough, an hour and a half later, he was 70. I gave him a few fruit snacks and checked again in 20 minutes. He was now 49. Yep, it must have been the set causing the highs.
If he had been with me, I would have changed the needle earlier. He wouldn’t have ran high as long.
Guilt, pain, grief, anger all rolled into one. That’s part of being a parent of a child with diabetes.
My head knows Riley’s going to be OK. I know Riley can be and do anything he wants. But, my heart just want get on board with my brain.
And, I don’t know how to make it.
Friday, March 09, 2007
Because sometimes you just need a good cry
A couple of nights ago I was sitting on the couch flipping through the TV channels. As usual, nothing was on worth watching.
But, then, I saw it, a movie I used to love, that was until Riley got diabetes. I own the movie, but have not been able to bring myself to watch it over the past 17 months. It just hits too close to home.
But, then, I saw it, a movie I used to love, that was until Riley got diabetes. I own the movie, but have not been able to bring myself to watch it over the past 17 months. It just hits too close to home.
But, I turned it there anyway. I didn’t really plan on watching it. I was almost compelled to turn it there.
I missed the beginning. When I turned it on, Shelby was sitting in the kitchen and telling her mom that she was pregnant. Her mom was none too pleased with this information.
At this point, I started telling myself, “OK, turn it NOW. You've seen it a hundred times. You know what happens. You really don’t need to watch it. Turn it.”
About that time, Shelby followed her mom into the other room and said:
“Mama, plenty of diabetics have babies and they do just fine.”
“But not you Shelby, you’re special.”
And that, my friends, is when I lost it. I started to cry. And, I pretty much cried through the whole rest of the movie.
I would get OK and then something would happen and I’d start up again.
Occasionally, Michael would walk through the living room and say, “You shouldn’t be watching this.” I would just peer at him from beneath the Kleenex I was holding up to my eyes.
I cried softly most of the time. But, when Jackson found Shelby lying in the floor, I started to sob.
And, when she died, I sobbed some more.
And, when her mom lost it at the funeral, I sobbed even harder.
I sat on my couch and cried all I wanted. I sat there and grieved for my son like I haven’t done in a long, long time.
It was just something that I needed to do.
After the movie was over, I got up, dried my tears, checked Riley’s sugar, read him a bedtime story, and tucked him into bed.
All the while, my now favorite quote from the movie was running through my head. Something that Shelby says to her mom when she tells her she's pregnant:
“ I’d rather have thirty minutes of wonderful than a lifetime of nothing special.”
And, I felt blessed because I think it’s the other way around for me. I’ve had a lifetime of wonderful and maybe thirty minutes of nothing special.
That's what I wish for Riley too. And now, I'm at the point where I can see it happening. A year ago, I couldn't say that. But, now, I'm sure that's what's in store for my boy: a lifetime of wonderful.
Monday, March 05, 2007
Another music meme
I got this meme from Nicole who got it from Julia. It looked like a lot of fun, so I thought I'd give it a try. But, turns out, Nicole and I turned 18 in the same year (who knew?) So, I did mine a little differently.
The rules are to go to popculturemadness and click on the decade you turned 18. Then, click on the year you actually turned 18. Paste the songs into your blog. Then, edit them: the ones you liked put in bold type, the ones you didn't likemark through, the ones you were neutral about put in italics, and the ones you don't know leave unedited. (but, I'm putting a question mark beside them like Nicole did)
I clicked on the PopMusic button and clicked on the hits for the year I turned 18 and got a longer list of songs, so that's what I am using. They are listed as the greatest hits of that year.
And, I must preface this by saying: Don't laugh at the songs I liked. Cut me some slack. I was only 18. Also, I haven't looked at the list yet. I probably won't know that many songs and the ones I do know I probably won't like. I was a Led Zeppelin/Jimi Hendrix/Aerosmith/Grateful Dead kind of girl in high school.
Unforgettable - Nat and Natalie Cole
Summertime - DJ Jazzy Jeff and Fresh Prince
(Everything I Do) I Do It For You - Bryan Adams
Gonna Make You Sweat - C + C Music Factory
More Than Words - Extreme
O.P.P. - Naughty By Nature
True Companion - Marc Cohn (??)
Good Vibrations - Marky Mark & The Funky Bunch
Strike It Up - Black Box (??)
Power of Love/Love Power - Luthor Vandross
It's So Hard To Say Goodbye To Yesterday - Boys II Men
Enter Sandman - Metallica
Motownphilly - Boys II Men
Crazy - Seal
God Bless The USA - Lee Greenwood
Unbelievable - EMF
Gypsy Woman (She's Homeless) - Crystal Waters (??)
Lets Talk About Sex - Salt N Pepa
Black or White- Michael Jackson
It Ain't Over Till It's Over - Lenny Kravitz
When A Man Loves A Woman - Michael Bolton
Here We Go - C+C Music Factory (??)
P.A.S.S.I.O.N. - Rythm Syndicate (??)
Star Spangled Banner - Whitney Houston
Coming Out Of The Dark - Gloria Estefan
Wind Of Change - Scorpions (??)
Things That Make You Go Hmmmm... - C+C Music Factory
Emotions - Mariah Carey (??)
I've Been Thinking About You - Londonbeat
She Talks To Angels - Black Crowes
Baby Baby - Amy Grant (??)
Can't Stop This Thing We Started - Bryan Adams (??)
Someday - Mariah Carey (??)
I'll Be There - Escape Club (??)
Something To Talk About - Bonnie Raitt
Joyride - Roxette (??)
Deeper Shade of Soul - Urban Dance Squad (??)
Love Is A Wonderful Thing - Michael Bolton
Silent Lucidity - Queensryche (??)
Set The Night To Music - Roberta Flack and Maxi Preist
Gett Off - Prince & The New Power Generation (??)
Sadness, Part 1 - Enigma (??)
Right Here, Right Now - Jesus Jones
Around The Way Girl - LL Cool J (??)
I Touch Myself - Divinyls
Walking In Memphis - Marc Cohn
Love Will Never Do (Without You) - Janet Jackson (??)
Rico Suave - Gerardo
High Enough - Damn Yankees
Justify My Love - Madonna
I Don't Wanna Cry - Mariah Carey (??)
Blowing Kisses In The Wind - Paula Abdul (??)
Every Heartbeat - Amy Grant
Everybody Plays The Fool - Aaron Neville
I Wanna Sex You Up - Color Me Badd
The Motown Song - Rod Stewart (??)
Miracle - Whitney Houston (??)
Touch Me (All Night Long) - Cathy Dennis (??)
(If There Was) Any Other Way - Celine Dion (??)
Losing My Religion - R.E.M.
Now That We Found Love - Heavy D and The Boys
Where Does My Heart Beat Now - Celine Dion
Round and Round - Tevin Campbell (??)
How To Dance - Bingoboys with Princessa (??)
Kiss Them For Me - Siouxsie & The Banshees (??)
Learning To Fly - Tom Petty and the Heartbreakers
You Could Be Mine - Guns N' Roses (??)
Don't Treat Me So Bad - Firehouse
Let The Beat Hit 'Em - Lisa Lisa and Cult Jam (??)
Wicked Game - Chris Isaak
Love... Thy Will Be Done - Martika (??)
Do The Bartman - The Simpsons
Shiny Happy People - R.E.M.
Into The Great Wide Open - Tom Petty & The Heartbreakers
The rules are to go to popculturemadness and click on the decade you turned 18. Then, click on the year you actually turned 18. Paste the songs into your blog. Then, edit them: the ones you liked put in bold type, the ones you didn't like
I clicked on the PopMusic button and clicked on the hits for the year I turned 18 and got a longer list of songs, so that's what I am using. They are listed as the greatest hits of that year.
And, I must preface this by saying: Don't laugh at the songs I liked. Cut me some slack. I was only 18. Also, I haven't looked at the list yet. I probably won't know that many songs and the ones I do know I probably won't like. I was a Led Zeppelin/Jimi Hendrix/Aerosmith/Grateful Dead kind of girl in high school.
Summertime - DJ Jazzy Jeff and Fresh Prince
(Everything I Do) I Do It For You - Bryan Adams
Gonna Make You Sweat - C + C Music Factory
O.P.P. - Naughty By Nature
True Companion - Marc Cohn (??)
Strike It Up - Black Box (??)
It's So Hard To Say Goodbye To Yesterday - Boys II Men
Enter Sandman - Metallica
Motownphilly - Boys II Men
God Bless The USA - Lee Greenwood
Unbelievable - EMF
Gypsy Woman (She's Homeless) - Crystal Waters (??)
Lets Talk About Sex - Salt N Pepa
Here We Go - C+C Music Factory (??)
P.A.S.S.I.O.N. - Rythm Syndicate (??)
Star Spangled Banner - Whitney Houston
Wind Of Change - Scorpions (??)
Things That Make You Go Hmmmm... - C+C Music Factory
Emotions - Mariah Carey (??)
She Talks To Angels - Black Crowes
Baby Baby - Amy Grant (??)
Can't Stop This Thing We Started - Bryan Adams (??)
Someday - Mariah Carey (??)
I'll Be There - Escape Club (??)
Something To Talk About - Bonnie Raitt
Joyride - Roxette (??)
Deeper Shade of Soul - Urban Dance Squad (??)
Silent Lucidity - Queensryche (??)
Gett Off - Prince & The New Power Generation (??)
Sadness, Part 1 - Enigma (??)
Around The Way Girl - LL Cool J (??)
Love Will Never Do (Without You) - Janet Jackson (??)
High Enough - Damn Yankees
I Don't Wanna Cry - Mariah Carey (??)
Blowing Kisses In The Wind - Paula Abdul (??)
Every Heartbeat - Amy Grant
The Motown Song - Rod Stewart (??)
Miracle - Whitney Houston (??)
Touch Me (All Night Long) - Cathy Dennis (??)
(If There Was) Any Other Way - Celine Dion (??)
Losing My Religion - R.E.M.
Now That We Found Love - Heavy D and The Boys
Round and Round - Tevin Campbell (??)
How To Dance - Bingoboys with Princessa (??)
Kiss Them For Me - Siouxsie & The Banshees (??)
You Could Be Mine - Guns N' Roses (??)
Let The Beat Hit 'Em - Lisa Lisa and Cult Jam (??)
Love... Thy Will Be Done - Martika (??)
Shiny Happy People - R.E.M.
After reading that list, I know why I listened to classic rock when I was in high school. Do The Bartman and Rico Suave? Music was really bad when I was a senior in high school. Really, really bad.
Saturday, March 03, 2007
Has it really been a whole year?
One year ago today we began on our pumping journey. It really doesn't seem like it's been that long, and then, in a way, it seems like we've been doing this forever.
We did our training at Wake Med in Raleigh. I remember that day. I was so nervous. I just knew that anytime Riley moved he would pull out his set. He's one of the most active 4 year olds I've ever seen. People actually comment all the time on how "busy" he is. And, in the last year, I think his set may have pulled out twice.
I remember putting his set in. It took me forever to rewind the pump and prime and all that stuff. The pump kept timing out and going back to the main screen before I could get to the next step. Now, from start to finish, it takes maybe 10 minutes, if that long.
I changed his set just this morning and barely even thought about the steps. It's just second nature now.
I really can't say enough nice things about the pump. I absolutely love it. I can't imagine what our lives would be like without it. I know there is no way we would have an A1C of 7.2 on injections. I know plenty of people do, but there's no way we could do it with Riley.
He gets such tiny doses of insulin. When he was on injections, he would often just run high because he couldn't get a small enough dose by syringe to bring him down. Early on, it was not unusual for him to get .15 unit for a correction, impossible with a syringe. So, when he needed just a little correction, he just ran high instead.
As much as I love the pump it's more work. Especially if you really want to fine tune everything. I mean you can change your insulin dosage from one hour to the next.
I've had my moments when I just wanted to throw the darn thing out the window. Especially early on. (To read about the first month of pumping go to my March 2006 archives. But, beware, it's not pretty.)
When I look at the picture at the top, I can't help but feel a twinge of sadness. While I'm so glad the technology is there and that Riley is able to benefit from it, it's also a little painful to see him attached to a machine.
But, it doesn't seem to bother him at all.
I'll leave you with a couple of pictures I took before I got the one you see at the top. Riley wouldn't be serious.
Pump or not, my kid is still a goofball.
Thursday, March 01, 2007
I Can't Get Enough of This Guy
Yes, I know everyone else isn't as in to him as I am, but take a look. I think he has some great things to say about living with diabetes.
Wednesday, February 28, 2007
Things that make you go hmmmm......
My mom called yesterday to let me know Riley's sugar was high.
She knew I would tell her to recheck it, so she already had. I always recheck when the result is in the 300s and there's no real explanation. For example, he had pasta or he's been running high all day.
But, the last few days his sugars have been great and the 343 that registered just didn't make sense. So, she checked it again and got 302. Yes, different, but still high.
He had a chicken sandwich and apple sauce for lunch (a very common meal for him) So, it was one of those "What the heck?" moments.
I told my mom to bolus for the 302 and to recheck in one hour. Whenever I bolus for a abnormally high sugar, I recheck in an hour to make sure it's coming down. That way I know it's probably not his set causing the high.
My mom called me an hour later. Riley's sugar was 50. Yes, 50 and he still had an awful lot of insulin on board.
He got fruit snacks and some (uncovered) cookies. Somehow he miraculously never rebounded.
So, my question is this: What in the heck happened? It's just so frustrating.
His sugar was checked twice, fingers wiped both times, using different fingers on a different hand. So, the high reading should have been correct. And, the low reading was correct.
He hadn't been any more active than usual. So how in the world did he drop 252 points in one freaking hour? Don't have an answer? Me either.
Just another example of why you can never just get comfortable with this disease.
She knew I would tell her to recheck it, so she already had. I always recheck when the result is in the 300s and there's no real explanation. For example, he had pasta or he's been running high all day.
But, the last few days his sugars have been great and the 343 that registered just didn't make sense. So, she checked it again and got 302. Yes, different, but still high.
He had a chicken sandwich and apple sauce for lunch (a very common meal for him) So, it was one of those "What the heck?" moments.
I told my mom to bolus for the 302 and to recheck in one hour. Whenever I bolus for a abnormally high sugar, I recheck in an hour to make sure it's coming down. That way I know it's probably not his set causing the high.
My mom called me an hour later. Riley's sugar was 50. Yes, 50 and he still had an awful lot of insulin on board.
He got fruit snacks and some (uncovered) cookies. Somehow he miraculously never rebounded.
So, my question is this: What in the heck happened? It's just so frustrating.
His sugar was checked twice, fingers wiped both times, using different fingers on a different hand. So, the high reading should have been correct. And, the low reading was correct.
He hadn't been any more active than usual. So how in the world did he drop 252 points in one freaking hour? Don't have an answer? Me either.
Just another example of why you can never just get comfortable with this disease.
Monday, February 26, 2007
Brought to you by the number 35
Friday night I packed. Clothes, check. Toiletries, check. Insulin, check. Infusion sets, check. Extra strips, check.Saturday morning we headed off to the great city of Charlotte.
Before checking into the hotel, we stopped to eat. While at the restaurant, Riley proclaimed that his sugar felt low and then he began to slide down in his seat almost to the floor.
His sugar was 61 . He got fruit snacks and then lay in the booth with his head in my lap and his feet in Michael’s until he felt better.
This was one of the doosies though. His sugar did eventually come up. But, it was one of those where he felt so bad he was whiny and begging for more fruit snacks.
But, other than that little episode (and the resulting spike of 310: rebound or miscounted carbs for the mini pizza he ate, who knows?), things on the diabetes front did just fine on our little trip.
Then, it was off to the hotel where I took a much-needed nap while Riley and Holden had pillow fights and Michael watched ESPN.
Then, it was time to leave. I was so excited my stomach felt like it had butterflies fluttering around in it.
We walked out of the front door of the hotel lobby, turned left, and then left again. And, there it was: Charlotte’s Bobcat Arena.
Now, I was really getting excited. Was he already inside? What was he doing? Would he play much? Would I be able to see him check his sugar?
We got there plenty early and sat down in our seats. We took the time to pose for some photos.
I took in the layout of the place.
Then, it was time. The lights dimmed and the music started and…there he was!! It was Adam Morrison!!!
I was clapping and screaming (and so was Riley).
We had a great time. Morrison didn’t start, but he got in the game fairly early and played most of the game. He ended up scoring 13 points.
We had great seats (8 rows up from the court), but it was behind the visitors bench. I couldn’t really see him when he was on the bench, so I never saw him check his sugar. (but I’m sure he did.)
The Bobcats played the Toronto Raptors and were only losing by 1 at half time, but Okafor and Wallace were both hurt in the second half and the Raptors ended up winning by 16 points.
But, I don’t care. I got to see Adam Morrison. I got to see someone who got diabetes and said, “So what? I can still do what I want.” And then proceeded to do just that. He was diagnosed with diabetes in the 8th grade, but never gave up his dream of being in the NBA.
Most people just saw an NBA basketball star run out on the court. But, not me. I saw hope. Hope for Riley and his future. Hope that Riley really can one day do whatever he wants.
Friday, February 23, 2007
I screwed up
I screwed up.
I’m not surprised. It’s not the first time I’ve screwed up, and unfortunately, it won’t be the last.
But, I screwed up when it comes to Riley's diabetes and it is tearing at my heart this morning.
I know it’s not really that big of a deal. I’m trying not to dwell on it. The whole reason I’m writing this post is to get it out and hopefully move on. It really amazes me how writing about an experience helps me to move on and not dwell on it.
Last night at supper Riley’s sugar was 116. Excellent.
He had some meat, spaghetti Os, french fries, and some ketchup. I counted his carbs twice and bolused for 25 grams.
At 9:30 last night, he wanted a snack. I checked his sugar. It was 351.
I looked at Michael, “Hmm, I wonder how that happened.”
I checked his needle, checked his tube for bubbles, and found everything to be in working order. I just chalked it up as "one of those things".
I bolused. He went down. He had a snack. He went to bed. He went low (69) twice during the night.
This morning at my mom’s I was logging his sugars and what he ate last night.
I started writing down, “french fries, ketchup, spaghetti o’s” . Then I started thinking. “Wasn’t there something else?”
Then it hit me. He had a roll. He ate a roll and got no coverage for it, 15g of no coverage.
Well, that explains the 351.
His average sugar yesterday was 164. Not bad for a four year old. But, I averaged his sugar without the 351 and it was 145. I like that better.
So, now, I’m beating myself up for miscounting his carbs. I know things like this happen. I know it won’t be the last time I do it. And I know in the grand scheme of life it didn't make that much of a difference.
But, I’m supposed to protect him. And, I’m the one who ran his sugar up last night. It was me. Not his insulin or a kink in his cannula or some weird unexplained cosmic thing. Me, me, me.
It just scares me. Number one, that I could just forget to bolus for something. Number two, it scares me what not bolusing for one roll did to his sugar.
Seeing what the miscount in carbs did made it more real to me somehow. It’s strange. I can’t really explain it.
It just sort of reinforced to me how dangerous this disease really is. And, how important it is to stay on top of it 24/7.
Maybe I needed to be reminded of that.
I’m not surprised. It’s not the first time I’ve screwed up, and unfortunately, it won’t be the last.
But, I screwed up when it comes to Riley's diabetes and it is tearing at my heart this morning.
I know it’s not really that big of a deal. I’m trying not to dwell on it. The whole reason I’m writing this post is to get it out and hopefully move on. It really amazes me how writing about an experience helps me to move on and not dwell on it.
Last night at supper Riley’s sugar was 116. Excellent.
He had some meat, spaghetti Os, french fries, and some ketchup. I counted his carbs twice and bolused for 25 grams.
At 9:30 last night, he wanted a snack. I checked his sugar. It was 351.
I looked at Michael, “Hmm, I wonder how that happened.”
I checked his needle, checked his tube for bubbles, and found everything to be in working order. I just chalked it up as "one of those things".
I bolused. He went down. He had a snack. He went to bed. He went low (69) twice during the night.
This morning at my mom’s I was logging his sugars and what he ate last night.
I started writing down, “french fries, ketchup, spaghetti o’s” . Then I started thinking. “Wasn’t there something else?”
Then it hit me. He had a roll. He ate a roll and got no coverage for it, 15g of no coverage.
Well, that explains the 351.
His average sugar yesterday was 164. Not bad for a four year old. But, I averaged his sugar without the 351 and it was 145. I like that better.
So, now, I’m beating myself up for miscounting his carbs. I know things like this happen. I know it won’t be the last time I do it. And I know in the grand scheme of life it didn't make that much of a difference.
But, I’m supposed to protect him. And, I’m the one who ran his sugar up last night. It was me. Not his insulin or a kink in his cannula or some weird unexplained cosmic thing. Me, me, me.
It just scares me. Number one, that I could just forget to bolus for something. Number two, it scares me what not bolusing for one roll did to his sugar.
Seeing what the miscount in carbs did made it more real to me somehow. It’s strange. I can’t really explain it.
It just sort of reinforced to me how dangerous this disease really is. And, how important it is to stay on top of it 24/7.
Maybe I needed to be reminded of that.
Wednesday, February 21, 2007
Parenting a child with diabetes
I’ve been thinking a lot lately about the parents out there who have just learned that their child has diabetes.
What would I say if a mother approached me and said, “My child was just diagnosed with diabetes yesterday.”?
Is there really anything that can be said? There are really no words of comfort to give. There is nothing to say to make it better. But, I’d try.
If nothing else, I’d be there to hold their hands and answer their questions. Even though, unfortunately, a lot of the questions they might ask really have no answers.
I know I’d try to convey to them that things will get better, but they probably wouldn’t believe me.
I remember when Riley was first diagnosed, I kept hearing, “It will get easier.”
And, I kept thinking, “No it won’t. It might have gotten easier for you, but it won’t for me. My son has a chronic disease and that is not going to change.”
But, somehow, even though the chronic disease part isn’t going anywhere, things did get easier, at least a little.
I think maybe the worst part for most parents is worrying that they’re not doing everything right. (which is impossible by the way)
I mean, we spent one night in the hospital and then I’m supposed to come home and be a pancreas for my 3-year-old son. I was armed with the knowledge of drawing up and injecting insulin and a vague understanding of counting carbs, but that was pretty much it. And, there is so much more to it than that.
The hard part is realizing that you’ve got to learn as you go. Of course your endo is there to guide you a bit. But, they can only do so much.
If there’s one thing I’ve learned, it’s that taking care of diabetes is a lot of guesswork. Now, once you get the hang of it, it’s an educated guess, but it’s still a guess nonetheless.
You’ve got to get to where you’re OK with that. There is no x + y = good blood sugar.
That was really hard for me. I thought you give him the insulin to cover the carbs and his sugar will always be in range.
I quickly learned that his sugar is often not in range no matter how hard I try.
When Riley was first diagnosed, I would sit for hours and look at his log book trying to figure out what I did wrong, why his sugar went up to 350 and then down to 57.
I’ve learned that usually it’s not anything I did wrong or anything that Riley did, it just is what it is. That’s a hard pill to swallow.
As parents we are supposed to protect our kids. We are supposed to fix things and with disease there’s no “fixing it”. Try as hard as I might I can’t fix it. I can’t make all of his sugars be in range.
Now, does that mean I should just give up? Heck no. It just means I have to be resilient. No matter how I tired I am of trying and not getting the results I want, I have to keep trying. I don't have a choice.
So, for any parents out there who might be reading and your child is newly diagnosed I wanted to leave you a few tidbits that have helped me.
#1) Keep good records. Even if you’re tired at the end of the day, log those sugars. They are your key to recognizing patterns. And recognizing patterns lets you know where you might need to make adjustments in insulin. And, by pattern, I mean at least 3 days worth of similar sugars at similar times.
#2) Don’t obsess over a few high sugars. (Yeah, I know, it seems impossible.) I used to freak out ANYTIME Riley’s sugar got high. I’ve kept all of his records and one time I went back and looked at his sugars from his first few days home. There were a few high ones, but they were way better sugars than what I would see down the road. But, I remember panicking a lot back then if his sugar went over 250. Now, at the end of the day, I go through and average his sugars. It’s really helped a lot to put it all into perspective. All of the sugars are not going to be OK, but I know at the end of the day if his average blood sugar is OK, then we’re on the right track. This is also another good way to notice patterns. If he has a few high days in a row, I know some adjustments might be needed. ( This only takes a few minutes. I usually do it while I'm watching TV.)
#3) Don’t forget to let your kid be a kid. (That probably should have been #1 on the list) I try very hard to let Riley be like everyone else as much as I can. I let him have cake and ice cream at birthday parties. He has a cookie or two for dessert every night. He got a sucker after getting his hair cut yesterday. When he was first diagnosed I would freak out about birthday parties. I would go in the bathroom and cry when he ate his cake. But, I’ve since figured out how to dose for birthday cake and for ice cream. The only way to learn how to deal with things, like cake and ice cream, is to let them have it and learn what it does to their sugars and then figure out how to fix it. There is not really much that your child can't do. Really.
#4) Test their sugar and test it often (kind of quoting Wilfred Brimley there) Don’t ever let someone tell you you’re testing your child’s sugar too much. You are the parent; you’re paying for the strips, test as much as you need to. I tested more than Riley really needed to be tested in the beginning. It was more for me than for him. It helped calm my fears. But, since then the testing has decreased. But, I still test anywhere from 9-12 times a day (on average). If he has a string of lows I test more, of course. You will know how often you need to be testing. And, to go along with that, don't let anyone tell you you're getting up to test too much at night. Again, you do what you've got to do.
#5) Never stop being an advocate for your child. (That kind of goes with what I said in #4. Don’t let their endo brush you off when you feel like you need to talk to them. (If they keep doing this, find a new endo. Riley's endo lives 3 hours away. But, I trully believe she's the best there is and it's well worth the drive.)Don’t let others make comments about your child having "bad diabetes” without correcting them (nicely, of course). We are their voice. We’re all they have until they can do it on their own. Educate, educate, educate. That is the key to getting people to help find a cure.
OK, I didn’t mean to ramble. Nor did I mean to sound like the authority on parenting a child with D. I am far, far from it. Most days I feel like I'm flying by the seat of my pants myself.
I'm just sharing a little bit of the knowledge I've picked up. I'd love to hear some of yours.
What would I say if a mother approached me and said, “My child was just diagnosed with diabetes yesterday.”?
Is there really anything that can be said? There are really no words of comfort to give. There is nothing to say to make it better. But, I’d try.
If nothing else, I’d be there to hold their hands and answer their questions. Even though, unfortunately, a lot of the questions they might ask really have no answers.
I know I’d try to convey to them that things will get better, but they probably wouldn’t believe me.
I remember when Riley was first diagnosed, I kept hearing, “It will get easier.”
And, I kept thinking, “No it won’t. It might have gotten easier for you, but it won’t for me. My son has a chronic disease and that is not going to change.”
But, somehow, even though the chronic disease part isn’t going anywhere, things did get easier, at least a little.
I think maybe the worst part for most parents is worrying that they’re not doing everything right. (which is impossible by the way)
I mean, we spent one night in the hospital and then I’m supposed to come home and be a pancreas for my 3-year-old son. I was armed with the knowledge of drawing up and injecting insulin and a vague understanding of counting carbs, but that was pretty much it. And, there is so much more to it than that.
The hard part is realizing that you’ve got to learn as you go. Of course your endo is there to guide you a bit. But, they can only do so much.
If there’s one thing I’ve learned, it’s that taking care of diabetes is a lot of guesswork. Now, once you get the hang of it, it’s an educated guess, but it’s still a guess nonetheless.
You’ve got to get to where you’re OK with that. There is no x + y = good blood sugar.
That was really hard for me. I thought you give him the insulin to cover the carbs and his sugar will always be in range.
I quickly learned that his sugar is often not in range no matter how hard I try.
When Riley was first diagnosed, I would sit for hours and look at his log book trying to figure out what I did wrong, why his sugar went up to 350 and then down to 57.
I’ve learned that usually it’s not anything I did wrong or anything that Riley did, it just is what it is. That’s a hard pill to swallow.
As parents we are supposed to protect our kids. We are supposed to fix things and with disease there’s no “fixing it”. Try as hard as I might I can’t fix it. I can’t make all of his sugars be in range.
Now, does that mean I should just give up? Heck no. It just means I have to be resilient. No matter how I tired I am of trying and not getting the results I want, I have to keep trying. I don't have a choice.
So, for any parents out there who might be reading and your child is newly diagnosed I wanted to leave you a few tidbits that have helped me.
#1) Keep good records. Even if you’re tired at the end of the day, log those sugars. They are your key to recognizing patterns. And recognizing patterns lets you know where you might need to make adjustments in insulin. And, by pattern, I mean at least 3 days worth of similar sugars at similar times.
#2) Don’t obsess over a few high sugars. (Yeah, I know, it seems impossible.) I used to freak out ANYTIME Riley’s sugar got high. I’ve kept all of his records and one time I went back and looked at his sugars from his first few days home. There were a few high ones, but they were way better sugars than what I would see down the road. But, I remember panicking a lot back then if his sugar went over 250. Now, at the end of the day, I go through and average his sugars. It’s really helped a lot to put it all into perspective. All of the sugars are not going to be OK, but I know at the end of the day if his average blood sugar is OK, then we’re on the right track. This is also another good way to notice patterns. If he has a few high days in a row, I know some adjustments might be needed. ( This only takes a few minutes. I usually do it while I'm watching TV.)
#3) Don’t forget to let your kid be a kid. (That probably should have been #1 on the list) I try very hard to let Riley be like everyone else as much as I can. I let him have cake and ice cream at birthday parties. He has a cookie or two for dessert every night. He got a sucker after getting his hair cut yesterday. When he was first diagnosed I would freak out about birthday parties. I would go in the bathroom and cry when he ate his cake. But, I’ve since figured out how to dose for birthday cake and for ice cream. The only way to learn how to deal with things, like cake and ice cream, is to let them have it and learn what it does to their sugars and then figure out how to fix it. There is not really much that your child can't do. Really.
#4) Test their sugar and test it often (kind of quoting Wilfred Brimley there) Don’t ever let someone tell you you’re testing your child’s sugar too much. You are the parent; you’re paying for the strips, test as much as you need to. I tested more than Riley really needed to be tested in the beginning. It was more for me than for him. It helped calm my fears. But, since then the testing has decreased. But, I still test anywhere from 9-12 times a day (on average). If he has a string of lows I test more, of course. You will know how often you need to be testing. And, to go along with that, don't let anyone tell you you're getting up to test too much at night. Again, you do what you've got to do.
#5) Never stop being an advocate for your child. (That kind of goes with what I said in #4. Don’t let their endo brush you off when you feel like you need to talk to them. (If they keep doing this, find a new endo. Riley's endo lives 3 hours away. But, I trully believe she's the best there is and it's well worth the drive.)Don’t let others make comments about your child having "bad diabetes” without correcting them (nicely, of course). We are their voice. We’re all they have until they can do it on their own. Educate, educate, educate. That is the key to getting people to help find a cure.
OK, I didn’t mean to ramble. Nor did I mean to sound like the authority on parenting a child with D. I am far, far from it. Most days I feel like I'm flying by the seat of my pants myself.
I'm just sharing a little bit of the knowledge I've picked up. I'd love to hear some of yours.
Thursday, February 15, 2007
FULL REWIND REQUIRED
Riley had been running high for a while. He would come down a little with insulin, but not as much as I thought he should. He woke up with a sugar of 222 this morning. That’s pretty unheard of for him. But, he had lasagna for supper last night, so I chalked it up to that.
I arrived in the office at 12:30 and picked up the phone to call my mom. Her first words were, “He’s still high.” I told her I’d be there soon to change his site. I’d rather be safe than sorry.
I got to my mom’s, sat down on the couch, and called over Riley. I pulled out his old set. I couldn’t find anything wrong with it. It looked fine to me.
I filled the cartridge with insulin and tapped out all the bubbles. Then, I went to prime/rewind on his pump menu and hit “OK”.
I scrolled up to “rewind”. It flashed across the screen “FULL REWIND REQUIRED”. Every so often, his pump requires that it rewind the whole way. His pump will hold 200 units. Riley only uses 9.5-10 units a day, so there’s no need to fill it all the way. I usually only rewind to about 75. It doesn’t take as long that way.
As I sat there listening to the whir of his pump and watching the arrows flash on the screen, I thought, “Hmm, why didn't God give us a rewind button?"
What if I could rewind back to before Riley had D, back to when life was simple?
I really don’t remember what life was like before Riley got diabetes. I don’t remember not thinking about what he ate or when he ate, or even if he ate. I don’t remember not getting up two or three times a night to check on him. I don’t remember going to work and not calling my mom all day to check on him.
It’s a defense mechanism I guess. It helps to take some of the sting out of it.
The whirring stopped and I heard a beep and my attention was again returned to the pump. I primed it and swabbed the area with IV Prep.
I cocked the inset and held it up against Riley’s skin. He flinched as the spring released and delved the needle into his flesh. I held it there a few seconds and pressed down a little. Then I pulled back on the device. And, out came the needle and the canula with it. “Darn it!!!”, I shouted. It didn’t stick.
I got a tissue and held it to where the blood was trickling out. It seemed to take forever to stop bleeding.
Then, I went through the routine again with a new set. Placed it against the skin, deep breath, released the spring, and, this time it stuck.
I bolused for his lunch he had just eaten and cleaned up what was left from the site change. Then, I leaned over and gave Riley a kiss on the cheek and explained that I had to go back to work.
He looked at me and said, “Now I’m going to go low.”
“What did you say?”
“I’m going to go low.”
“Why do you say that?”
“Because sometimes when you change my needle, I go too low.”
He’s right. It’s just something that happens. A 60% decrease in his basal for 3 ½ hours and a decrease in his meal bolus usually does the trick. But, he still usually has at least one time during that day that he has to have fruit snacks to keep him from going too low.
As smart as he is and as proud as I am that he knows this, I turn away as the tears well up in my eyes.
“It’s just so unfair!”, I think to myself. “He shouldn’t know that! He shouldn’t have to worry about things like that!”
But, he does.
And, now, I know why God doesn't give us rewind buttons.
I don't know how Riley got this disease or why. If I were to go back in time, it wouldn't prevent him from getting it, it would just delay it.
To fully get rid of this disease a full rewind would be required.
And, I'd rather have the Riley with the carbs and the pump and the midnight needle sticks than to have no Riley at all.
I arrived in the office at 12:30 and picked up the phone to call my mom. Her first words were, “He’s still high.” I told her I’d be there soon to change his site. I’d rather be safe than sorry.
I got to my mom’s, sat down on the couch, and called over Riley. I pulled out his old set. I couldn’t find anything wrong with it. It looked fine to me.
I filled the cartridge with insulin and tapped out all the bubbles. Then, I went to prime/rewind on his pump menu and hit “OK”.
I scrolled up to “rewind”. It flashed across the screen “FULL REWIND REQUIRED”. Every so often, his pump requires that it rewind the whole way. His pump will hold 200 units. Riley only uses 9.5-10 units a day, so there’s no need to fill it all the way. I usually only rewind to about 75. It doesn’t take as long that way.
As I sat there listening to the whir of his pump and watching the arrows flash on the screen, I thought, “Hmm, why didn't God give us a rewind button?"
What if I could rewind back to before Riley had D, back to when life was simple?
I really don’t remember what life was like before Riley got diabetes. I don’t remember not thinking about what he ate or when he ate, or even if he ate. I don’t remember not getting up two or three times a night to check on him. I don’t remember going to work and not calling my mom all day to check on him.
It’s a defense mechanism I guess. It helps to take some of the sting out of it.
The whirring stopped and I heard a beep and my attention was again returned to the pump. I primed it and swabbed the area with IV Prep.
I cocked the inset and held it up against Riley’s skin. He flinched as the spring released and delved the needle into his flesh. I held it there a few seconds and pressed down a little. Then I pulled back on the device. And, out came the needle and the canula with it. “Darn it!!!”, I shouted. It didn’t stick.
I got a tissue and held it to where the blood was trickling out. It seemed to take forever to stop bleeding.
Then, I went through the routine again with a new set. Placed it against the skin, deep breath, released the spring, and, this time it stuck.
I bolused for his lunch he had just eaten and cleaned up what was left from the site change. Then, I leaned over and gave Riley a kiss on the cheek and explained that I had to go back to work.
He looked at me and said, “Now I’m going to go low.”
“What did you say?”
“I’m going to go low.”
“Why do you say that?”
“Because sometimes when you change my needle, I go too low.”
He’s right. It’s just something that happens. A 60% decrease in his basal for 3 ½ hours and a decrease in his meal bolus usually does the trick. But, he still usually has at least one time during that day that he has to have fruit snacks to keep him from going too low.
As smart as he is and as proud as I am that he knows this, I turn away as the tears well up in my eyes.
“It’s just so unfair!”, I think to myself. “He shouldn’t know that! He shouldn’t have to worry about things like that!”
But, he does.
And, now, I know why God doesn't give us rewind buttons.
I don't know how Riley got this disease or why. If I were to go back in time, it wouldn't prevent him from getting it, it would just delay it.
To fully get rid of this disease a full rewind would be required.
And, I'd rather have the Riley with the carbs and the pump and the midnight needle sticks than to have no Riley at all.
Wednesday, February 14, 2007
A part of me
I have been inspired by Kerri and Nicole, whose significant others are so sweet they’ll give you a cavity, to write a post about my sweetie.
I know I don’t tell him nearly enough how much he means to me. I take so many things for granted.
Like, the fact that if I happen to groan when I roll over in bed, he always asks me if I need anything. And, if I do need (or want) anything, he’ll get up and get it, whether it’s when we first go to bed or at 3 o’clock in the morning.
Or, the other night, I accidentally got his pillow by mistake. As I lay my head down on it, I commented on how nice and soft it is. He immediately responded with, “You can use it if you want to.” He said this knowing that my pillow is as flat as a pancake and he probably wouldn’t sleep a wink if he used it, because he loves fluffy pillows. But, he would have given it up to make me happy.
Or, the poems he’s written me over the years. Or, the flowers he brought home a couple of nights ago, just because. Or, the wonderful father he is to both the boys. Or, the way he looks at me sometimes like he did when we first met. Or, how whenever someone asks him to go out after work, he tells them he’d rather go spend time with his family. Or the way he makes me feel like I’m the most attractive person in the world even though I still have my pajamas on and my hair is sticking up all over the place.
He makes me feel safe. He makes me feel needed. He makes me feel wanted.
He helps make me, me.
I love you, Michael Alexander, like a whole lot.
I know I don’t tell him nearly enough how much he means to me. I take so many things for granted.
Like, the fact that if I happen to groan when I roll over in bed, he always asks me if I need anything. And, if I do need (or want) anything, he’ll get up and get it, whether it’s when we first go to bed or at 3 o’clock in the morning.
Or, the other night, I accidentally got his pillow by mistake. As I lay my head down on it, I commented on how nice and soft it is. He immediately responded with, “You can use it if you want to.” He said this knowing that my pillow is as flat as a pancake and he probably wouldn’t sleep a wink if he used it, because he loves fluffy pillows. But, he would have given it up to make me happy.
Or, the poems he’s written me over the years. Or, the flowers he brought home a couple of nights ago, just because. Or, the wonderful father he is to both the boys. Or, the way he looks at me sometimes like he did when we first met. Or, how whenever someone asks him to go out after work, he tells them he’d rather go spend time with his family. Or the way he makes me feel like I’m the most attractive person in the world even though I still have my pajamas on and my hair is sticking up all over the place.
He makes me feel safe. He makes me feel needed. He makes me feel wanted.
He helps make me, me.
I love you, Michael Alexander, like a whole lot.
Tuesday, February 13, 2007
Fun with music
A little while ago a lot of you posted this meme. I wasn't in a very fun mood at the time, so I skipped it.
I decided to do it today, just for fun.
The rules are: put your Ipod, MP3 player, or computer music program on shuffle and answer the questions with whatever song pops up.
What does next year have in store for me? Lips of an Angel--Hinder (huh?)
What's my love life like? 18 and Life--Skid Row ("Your crime is time and it's 18 and life to go" Well, I was hoping to be with Michael for the rest of my life.)
What do I say when life gets hard? Drain You--Nirvana (Yes, it is very draining sometimes.)
What do I think of on waking up? Kiss--Prince (Funny, Michael usually wakes me up with a kiss every morning.)
What song will I dance to at my wedding? Mama Kin--Aerosmith
What do I want as a career? Money Maker--Ludacris (Now we're talking!)
Favorite place? Zero--The Smashing Pumpkins
What do I think of my parents? At Last--Etta James (That would have worked out better if I could switch that with my wedding song answer.)
What's my porn star name? Straight To Hell--Drivin' N' Cryin' (Is that a sign or what?)
Where would I go on a first date? Wishing Well--Terence Trent D'Arby (And, I know just what I'd wish for.)
Drug of choice? Swim--Bush
Describe myself. Testosterone--Bush (Well, I didn't really think I was all that manly looking.)
What is the thing I like doing most? What I Got--Sublime (The perfect answer!!)
What is my state of mind like at the moment? Billie Jean--Michael Jackson
How will I die? Waiting on the World to Change--John Mayer ( I hope not.)
Well, that was fun. Feel free to play along if you'd like.
I decided to do it today, just for fun.
The rules are: put your Ipod, MP3 player, or computer music program on shuffle and answer the questions with whatever song pops up.
What does next year have in store for me? Lips of an Angel--Hinder (huh?)
What's my love life like? 18 and Life--Skid Row ("Your crime is time and it's 18 and life to go" Well, I was hoping to be with Michael for the rest of my life.)
What do I say when life gets hard? Drain You--Nirvana (Yes, it is very draining sometimes.)
What do I think of on waking up? Kiss--Prince (Funny, Michael usually wakes me up with a kiss every morning.)
What song will I dance to at my wedding? Mama Kin--Aerosmith
What do I want as a career? Money Maker--Ludacris (Now we're talking!)
Favorite place? Zero--The Smashing Pumpkins
What do I think of my parents? At Last--Etta James (That would have worked out better if I could switch that with my wedding song answer.)
What's my porn star name? Straight To Hell--Drivin' N' Cryin' (Is that a sign or what?)
Where would I go on a first date? Wishing Well--Terence Trent D'Arby (And, I know just what I'd wish for.)
Drug of choice? Swim--Bush
Describe myself. Testosterone--Bush (Well, I didn't really think I was all that manly looking.)
What is the thing I like doing most? What I Got--Sublime (The perfect answer!!)
What is my state of mind like at the moment? Billie Jean--Michael Jackson
How will I die? Waiting on the World to Change--John Mayer ( I hope not.)
Well, that was fun. Feel free to play along if you'd like.
Saturday, February 10, 2007
One more thing
One more thing about the badge in my sidebar. You can also put it on your blog or web page or wherever you'd like. Just go to the sidebar and click on "Get this badge".
Thanks!
Thanks!
Friday, February 09, 2007
Six degrees of seperation
I got an email about this, but I didn't really pay much attention to it until today.
The email was explaining a way to have people donate to the charity of your choice. (This was started by Kevin Bacon, thus the name.) So, I got to thinking, why not give it a shot? Even if I don't get any donations, I won't be any worse off than I am now.
The charity I chose is The Iacocca Foundation. If you would like to donate, please click the link on the blog.
The people that raise the most money will get $10,000 donated to their charity. $10,000 to go to research to find a cure for diabetes, wow that would be great.
If you would like to fund your own charity you can do so by going to Network for Good.
The email was explaining a way to have people donate to the charity of your choice. (This was started by Kevin Bacon, thus the name.) So, I got to thinking, why not give it a shot? Even if I don't get any donations, I won't be any worse off than I am now.
The charity I chose is The Iacocca Foundation. If you would like to donate, please click the link on the blog.
The people that raise the most money will get $10,000 donated to their charity. $10,000 to go to research to find a cure for diabetes, wow that would be great.
If you would like to fund your own charity you can do so by going to Network for Good.
Thursday, February 08, 2007
Test strip update
Since I last posted, I have gotten the strip problem straight, for now.
Not long after I wrote my last post, I found a medical equipment company to get the strips from. The man there was very knowledgeable and very helpful.
I went and picked up 250 Freestyle strips this afternoon. From now on they will be mailing me 350 strips every month.
And, I no longer have to pay up front. They called my insurance company and found out I'd met my deductible. (Yeah, like the very first day that the plan started.) And, they are just going to send me a bill for my 10%. That means I got 250 strips today for $20.00. Woo hoo!!!
But, you know what the best thing is that happened today? I found out what a great community the OC is. I had a couple of people to email me and offer to send some strips to get me through. I can't tell you how much that means to me.
I am honored to be a part of such a wonderful group of people.
I'm still really, really tired, but now it's a happy tired.
P.S. George, I'm really hoping you win the lottery.
Not long after I wrote my last post, I found a medical equipment company to get the strips from. The man there was very knowledgeable and very helpful.
I went and picked up 250 Freestyle strips this afternoon. From now on they will be mailing me 350 strips every month.
And, I no longer have to pay up front. They called my insurance company and found out I'd met my deductible. (Yeah, like the very first day that the plan started.) And, they are just going to send me a bill for my 10%. That means I got 250 strips today for $20.00. Woo hoo!!!
But, you know what the best thing is that happened today? I found out what a great community the OC is. I had a couple of people to email me and offer to send some strips to get me through. I can't tell you how much that means to me.
I am honored to be a part of such a wonderful group of people.
I'm still really, really tired, but now it's a happy tired.
P.S. George, I'm really hoping you win the lottery.
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