Ugh. I feel really yucky today. I have some sort of virus that has made me feel nauseated. No vomiting, nothing so bad as to not go to work, but just REALLY fatigued and mildly nauseous. It started Sunday, and I haven't been able to recover. Maybe it was the chicken shit exposure??? Maybe not.
Honestly, I was beginning to become afraid that I was starting to get sick again. I feel like I did when I was really sick except that my brain fog isn't there. I told Phil last night that I don't think I could handle feeling like that again EVER in my life. I spoke with a friend today, though, that is feeling the same way, as is her husband, as is one of my nurses, so I guess it's just viral.
Anyhow, Emma's been a little under the weather, too. She has been running pretty high - high enough that I kept her home yesterday to keep an eye on her ketones and manage her a little more carefully. So, she's been feeling under the weather, as have I, and her sugars are crazy, so she is and I am a little emotional. At about 9:30 last night, she was having trouble sleeping, so she got out of bed to go to the bathroom, and her pump fell out of the pump pack and ripped out of her skin. I told her, "No problem, just go get your changing kit and change it." She went downstairs and got it, then came upstairs to change. Mind you, she had just changed twice in two days because her sugars have been so high.
(Let me take a minute here to fill those of you who don't know what I'm talking about in on what my daughter has been doing by herself since she was 7. She fills a vial with insulin, puts it in the pump, programs the pump to give it, and then injects the pump site into her skin, withdraws the needle, and leaves the cannula in her skin. The needle is 6mm long. She does it all herself. She's amazing. She also checks her sugar about 7-8 times a day. There's another thing that she does on her own that is worse. She puts her sensor in. The needle for the sensor is about 1.2 inches long and a bigger caliber than the pump needle. It hurts. BAD. The sensor checks her sugar every couple of seconds and gives us a real time reading. It's great, but it falls out a lot, beeps ALL the time, and is very painful to insert and wear. We don't use it all the time, just when her control goes crazy or when she's staying with other people. I have a 25 year old patient who won't use his sensor because "It hurts too much". Puss.)
So anyhow, Emma got her pump changing stuff and came back upstairs. When she went to change it, the needle was bent. So, I said, "OK, go back downstarirs and get another set." She did. She changed her pump, then she came back in my room and started to just BAWL. She said, "Mommy, I HATE being diabetic. It's just not fair!" She's right. It sucks. She handles it well 99.9 percent of the time, and has even said that she doesn't know what she'd do if there was a cure, because she defines herself as "Emma, the kid with diabetes." But sometimes, the frustration just gets the better of her.
Emma is a tween. She is starting to get stinky and some hair and some boobage. (oh, gawd, she'd be so mad if she knew I was writing this.) She doesn't like to wear her sensor at school because when it beeps, the other kids notice and tell her to check her sugar. She KNOWS she feels better when she wears it, but she doesn't like the fact that it calls more attention to her than she wants. She has taken to not checking her sugar as often as she should because she doesn't like the attention that it draws. I think she also has "diabetes burnout" - very common in kids that have had it for a long time. She doesn't check because she just wants it to go away. Emma is intelligent and she has a better handle on this than most kids her age. She just gets frustrated sometimes. So do I.
I held her for an hour last night and let her cry. I told her that it's OK to sometimes feel sorry for herself. I told her that I don't feel sorry for her, but that's not a bad thing. I told her that I feel sorry for people that aren't strong enough to handle the disease. I also feel sorry for people who have diseases that can't be treated, but I don't feel sorry for her. I said that I am sorry that she has diabetes, though, and that if I could take it away, I would. I told her that she's strong, brave, beautiful, funny, smart, and not defined by her disease. She cried for a long time and finally fell asleep. It took me much longer. I'm crying now as I write this becuase seeing my child hurt is near impossible for me.
On the flip side of all this is my son. He's a vibrant, VERY active 6 year old. He's aware of Emma's disease and is becoming more cognizant of what it could mean for her. He knows that she can have seizures and that she could end up in the hospital. He's also acutely aware of the attention that she gets.
I had friends as a child that were twins. The brother had leukemia as a child. He got LOTS of attention because of it. Justly so. She did not. She often felt left behind, left out, forgotten. She used to complain to me that she could just disappear and her parents wouldn't know. As an adult, she has become an alcoholic and has, in effect, gotten lost. She lives on the streets and her mother is constantly finding her, trying to help, and losing her again. If that's not a lesson, I don't know what is. It's probably extreme, but it's there, nonetheless.
Last night, Lee wasn't feeling well. He asked if he could sleep with us. We let him, and he fell asleep. When he woke up this morning, I was sleeping with Emma in her bed. He was hurt because I was supposed to sleep with him. It's not like he was being selfish. Unfortunately, this happens a lot to him. We tell the kids that they have to sleep in their own beds, but then Emma's sugar drops and she ends up in bed with us because we're worried she's going to have a seizure. (She has on multiple occasions) When Lee wakes up, she's in bed with us, and he's hurt. He understands, but he's only 6, and it hurts.
On other occasions, we are planning to do something with Lee, but it gets usurped because something comes up with Emma's sugars and we have to leave or reschedule. It's not fair to him, but I don't know how to fix it. We plan "Lee time", and he likes that, but the day to day stuff is a little hard for him to deal with, I think. Even dinner has to wait until Emma checks her sugars. He's a good, loving kid, and he's even cried because he wishes Emma didn't have diabetes, but he still wishes that we could focus on him as much as we do on her.
I didn't have a "normal" kid first, so I don't know how much of this is first child, second child stuff. I don't know what other parents with diabetic kids do. I just know that I wish I could just make it better for both of the kids. Neither of them deserve this and they both handle it so well. I don't want people who read this to be like, "Aw, poor family." It's not like that. On a daily basis, this is just part of life and we all do VERY well with it. Sometimes, it gets the best of us, though, and we melt down a little. That's what today is. I'm sick and I'm tired, and I just feel like blogging about some of it.
So, please, if you read this, don't feel "sorry". Also, don't feel like we sit around all the time and wallow in sorrow. As I tell Emma all the time, "Everyone has something." We all just go through life and deal with what we are dealt, rejoicing in the good, and sometimes getting caught up in the bad. If you do want to do something for Emma, though, please feel free to contact the JDRF. (JDRF.org) The ADA doesn't do any real research on type 1 DM. JDRF focuses on juvenile diabetes. Donate, volunteer, help us find a cure.
Thanks.
Dr. Mindy
Honestly, I was beginning to become afraid that I was starting to get sick again. I feel like I did when I was really sick except that my brain fog isn't there. I told Phil last night that I don't think I could handle feeling like that again EVER in my life. I spoke with a friend today, though, that is feeling the same way, as is her husband, as is one of my nurses, so I guess it's just viral.
Anyhow, Emma's been a little under the weather, too. She has been running pretty high - high enough that I kept her home yesterday to keep an eye on her ketones and manage her a little more carefully. So, she's been feeling under the weather, as have I, and her sugars are crazy, so she is and I am a little emotional. At about 9:30 last night, she was having trouble sleeping, so she got out of bed to go to the bathroom, and her pump fell out of the pump pack and ripped out of her skin. I told her, "No problem, just go get your changing kit and change it." She went downstairs and got it, then came upstairs to change. Mind you, she had just changed twice in two days because her sugars have been so high.
(Let me take a minute here to fill those of you who don't know what I'm talking about in on what my daughter has been doing by herself since she was 7. She fills a vial with insulin, puts it in the pump, programs the pump to give it, and then injects the pump site into her skin, withdraws the needle, and leaves the cannula in her skin. The needle is 6mm long. She does it all herself. She's amazing. She also checks her sugar about 7-8 times a day. There's another thing that she does on her own that is worse. She puts her sensor in. The needle for the sensor is about 1.2 inches long and a bigger caliber than the pump needle. It hurts. BAD. The sensor checks her sugar every couple of seconds and gives us a real time reading. It's great, but it falls out a lot, beeps ALL the time, and is very painful to insert and wear. We don't use it all the time, just when her control goes crazy or when she's staying with other people. I have a 25 year old patient who won't use his sensor because "It hurts too much". Puss.)
So anyhow, Emma got her pump changing stuff and came back upstairs. When she went to change it, the needle was bent. So, I said, "OK, go back downstarirs and get another set." She did. She changed her pump, then she came back in my room and started to just BAWL. She said, "Mommy, I HATE being diabetic. It's just not fair!" She's right. It sucks. She handles it well 99.9 percent of the time, and has even said that she doesn't know what she'd do if there was a cure, because she defines herself as "Emma, the kid with diabetes." But sometimes, the frustration just gets the better of her.
Emma is a tween. She is starting to get stinky and some hair and some boobage. (oh, gawd, she'd be so mad if she knew I was writing this.) She doesn't like to wear her sensor at school because when it beeps, the other kids notice and tell her to check her sugar. She KNOWS she feels better when she wears it, but she doesn't like the fact that it calls more attention to her than she wants. She has taken to not checking her sugar as often as she should because she doesn't like the attention that it draws. I think she also has "diabetes burnout" - very common in kids that have had it for a long time. She doesn't check because she just wants it to go away. Emma is intelligent and she has a better handle on this than most kids her age. She just gets frustrated sometimes. So do I.
I held her for an hour last night and let her cry. I told her that it's OK to sometimes feel sorry for herself. I told her that I don't feel sorry for her, but that's not a bad thing. I told her that I feel sorry for people that aren't strong enough to handle the disease. I also feel sorry for people who have diseases that can't be treated, but I don't feel sorry for her. I said that I am sorry that she has diabetes, though, and that if I could take it away, I would. I told her that she's strong, brave, beautiful, funny, smart, and not defined by her disease. She cried for a long time and finally fell asleep. It took me much longer. I'm crying now as I write this becuase seeing my child hurt is near impossible for me.
On the flip side of all this is my son. He's a vibrant, VERY active 6 year old. He's aware of Emma's disease and is becoming more cognizant of what it could mean for her. He knows that she can have seizures and that she could end up in the hospital. He's also acutely aware of the attention that she gets.
I had friends as a child that were twins. The brother had leukemia as a child. He got LOTS of attention because of it. Justly so. She did not. She often felt left behind, left out, forgotten. She used to complain to me that she could just disappear and her parents wouldn't know. As an adult, she has become an alcoholic and has, in effect, gotten lost. She lives on the streets and her mother is constantly finding her, trying to help, and losing her again. If that's not a lesson, I don't know what is. It's probably extreme, but it's there, nonetheless.
Last night, Lee wasn't feeling well. He asked if he could sleep with us. We let him, and he fell asleep. When he woke up this morning, I was sleeping with Emma in her bed. He was hurt because I was supposed to sleep with him. It's not like he was being selfish. Unfortunately, this happens a lot to him. We tell the kids that they have to sleep in their own beds, but then Emma's sugar drops and she ends up in bed with us because we're worried she's going to have a seizure. (She has on multiple occasions) When Lee wakes up, she's in bed with us, and he's hurt. He understands, but he's only 6, and it hurts.
On other occasions, we are planning to do something with Lee, but it gets usurped because something comes up with Emma's sugars and we have to leave or reschedule. It's not fair to him, but I don't know how to fix it. We plan "Lee time", and he likes that, but the day to day stuff is a little hard for him to deal with, I think. Even dinner has to wait until Emma checks her sugars. He's a good, loving kid, and he's even cried because he wishes Emma didn't have diabetes, but he still wishes that we could focus on him as much as we do on her.
I didn't have a "normal" kid first, so I don't know how much of this is first child, second child stuff. I don't know what other parents with diabetic kids do. I just know that I wish I could just make it better for both of the kids. Neither of them deserve this and they both handle it so well. I don't want people who read this to be like, "Aw, poor family." It's not like that. On a daily basis, this is just part of life and we all do VERY well with it. Sometimes, it gets the best of us, though, and we melt down a little. That's what today is. I'm sick and I'm tired, and I just feel like blogging about some of it.
So, please, if you read this, don't feel "sorry". Also, don't feel like we sit around all the time and wallow in sorrow. As I tell Emma all the time, "Everyone has something." We all just go through life and deal with what we are dealt, rejoicing in the good, and sometimes getting caught up in the bad. If you do want to do something for Emma, though, please feel free to contact the JDRF. (JDRF.org) The ADA doesn't do any real research on type 1 DM. JDRF focuses on juvenile diabetes. Donate, volunteer, help us find a cure.
Thanks.
Dr. Mindy
Another wonderful post. Love those kids! Take the best parts of each of them and you'd have a person ANY of us would be lucky to be "when we grow up".
ReplyDeleteNice one Mindy.enjoyed reading this and other ones you wrote
ReplyDeleteReally enjoy your thoughts and opinions Dr. Mindy! Some how you make my life seem normal!
ReplyDeletewhen i was pregnant with O, everyone would ask me if i was afraid he'd have diabetes or do i think it would be 'easier' if he had it, too. one-i'm not afraid of diabetes (anymore) so if it turns out that oliver 'gets' diabetes sometime in life, so be it. we'll keep movin' forward. and two-i don't have an answer for whether i think life would be easier if O had type 1. am i a bad mom to say i don't care? that it wouldn't phase us? no one WISHES a disease on their child...so of course i don't want ANY child to be sick, especially one of my own. but it's nothing we can't handle. i think regardless, i will still measure, weigh, count carbs, and do treat both kids equally in our home.
ReplyDeletegreat post, dr. mindy :)
thanks for sharing.
we are walking in charleston in may. i think we'll walk in pittsburgh, too-but that isn't until september. if you (or anyone reading this) wants any info on the JDRF WALK FOR A CURE, let me know...